Today, we're celebrating it quietly in his hospital room--no fanfare, just whispers of encouragement and love, and tender caresses to remind us that we'll always be there for each other.
Friday, July 03, 2009
ICU Day 15 (The Anniversary Issue)
Exactly 1 year ago, Andre and I celebrated our 8th year anniversary by getting married in Vancouver, Canada.
Today, we're celebrating it quietly in his hospital room--no fanfare, just whispers of encouragement and love, and tender caresses to remind us that we'll always be there for each other.
Today, we're celebrating it quietly in his hospital room--no fanfare, just whispers of encouragement and love, and tender caresses to remind us that we'll always be there for each other.
Thursday, July 02, 2009
ICU Day 13 and 14
Today is exactly two weeks after Andre's surgery. There's nothing much to report since it's been a pretty quiet day-and-a-half. They did another breathing trial yesterday which lasted for about three hours before they put him back on the ventilator--the reason, he "woke up" and started breathing faster and shallower. Right now, he's back breathing on his own again. It's been at least an hour-and-a-half. Let's see how long he can go this time.
Tomorrow is the tracheotomy day, at 9 AM. I signed the consent for the procedure yesterday, and the otolaryngology surgical resident who consented me told me I'm the first caregiver/patient to ever ask about the difference between a tracheotomy and a tracheostomy. I asked because he kept calling the procedure the former while the pulmonary & critical care doc kept calling it the latter. The resident's bottomline response is that the former is simpler procedure, and typically temporary. I'll take his word for it.
I've been slowing packing the house. Our realtor clarified to me that we don't have to move out today. That's a relief.
Tomorrow is the tracheotomy day, at 9 AM. I signed the consent for the procedure yesterday, and the otolaryngology surgical resident who consented me told me I'm the first caregiver/patient to ever ask about the difference between a tracheotomy and a tracheostomy. I asked because he kept calling the procedure the former while the pulmonary & critical care doc kept calling it the latter. The resident's bottomline response is that the former is simpler procedure, and typically temporary. I'll take his word for it.
I've been slowing packing the house. Our realtor clarified to me that we don't have to move out today. That's a relief.
Tuesday, June 30, 2009
ICU Day 12
It's been a quiet day and the night promises to be the same. It's a waiting game right now with the surgeons. As usual, everyone is a slave to their schedule. I'm hoping they can do it soon so that Andre can be alert on July 3rd--our special day.
The highlight of the day is that Andre, fully sedated and with the breathing tube down his throat, breathe on his own for more than 10 hours. There was really no reason to restart the ventilator but the respiratory technician wanted to give Andre some rest for the night. This proves to me that as far as lung mechanics and physiology is concerned, there is nothing wrong with Andre. I think what happened yesterday is still the inability of the docs to find the right level of sedation to balance consciousness and pain control. When they took out the breathing tube yesterday, Andre was not awake enough to cough out all the secretions in his lung that were blocking his breathing. He'll still need to be able to do this even with a tracheostomy tube but if he can't, it will be easier for the docs to put him back on the ventilator compared to re-intubating him through the mouth.
So even with an excellent breathing trial today, the plan remains the same: tracheostomy. I'll let you know when the surgeons get their act together.
The highlight of the day is that Andre, fully sedated and with the breathing tube down his throat, breathe on his own for more than 10 hours. There was really no reason to restart the ventilator but the respiratory technician wanted to give Andre some rest for the night. This proves to me that as far as lung mechanics and physiology is concerned, there is nothing wrong with Andre. I think what happened yesterday is still the inability of the docs to find the right level of sedation to balance consciousness and pain control. When they took out the breathing tube yesterday, Andre was not awake enough to cough out all the secretions in his lung that were blocking his breathing. He'll still need to be able to do this even with a tracheostomy tube but if he can't, it will be easier for the docs to put him back on the ventilator compared to re-intubating him through the mouth.
So even with an excellent breathing trial today, the plan remains the same: tracheostomy. I'll let you know when the surgeons get their act together.
Monday, June 29, 2009
ICU Day 11
When the pulmonary and critical care fellow came in Andre's room this morning he declared, "Let's give Andre a shot at extubation. Everybody deserves at least one chance." He wanted to see if Andre can be spared the tracheostomy which was all but certain from Sunday's meeting with his attending physician.
So, they lowered Andre's sedation and put him on a breathing trial. After an hour of him breathing on his own and having good blood gas levels, they pulled out his endotracheal tube. This was at around 12:15 PM. Three hours later, Andre was re-intubated because he was in distress as evidenced by his fast and shallow breathing, his blood numbers in the abnormal range (lower pH and high CO2 concentration), and his inability to cough out the secretions in his lungs that were likely contributing to his rapid respiratory rate.
He's still asleep from the anesthesia that the doctor gave to him for the intubation process. I'm just here at the hospital waiting for the doctors to come by so I can give my consent to Andre's tracheostomy. Thank goodness Andre and I did our legal paperwork right after his diagnosis almost three years ago. The power-of-attorney sure does come in handy for folks like us who are denied the automatic legal protections that comes with a civil marriage.
So, they lowered Andre's sedation and put him on a breathing trial. After an hour of him breathing on his own and having good blood gas levels, they pulled out his endotracheal tube. This was at around 12:15 PM. Three hours later, Andre was re-intubated because he was in distress as evidenced by his fast and shallow breathing, his blood numbers in the abnormal range (lower pH and high CO2 concentration), and his inability to cough out the secretions in his lungs that were likely contributing to his rapid respiratory rate.
He's still asleep from the anesthesia that the doctor gave to him for the intubation process. I'm just here at the hospital waiting for the doctors to come by so I can give my consent to Andre's tracheostomy. Thank goodness Andre and I did our legal paperwork right after his diagnosis almost three years ago. The power-of-attorney sure does come in handy for folks like us who are denied the automatic legal protections that comes with a civil marriage.
Sunday, June 28, 2009
ICU Days 9 and 10
Saturday and Sunday for Andre has been relatively quiet except for short bursts of V-tachs and SVTs everytime he was agitated. The docs have held off on the Haldol since it can exacerbate his arrhythmia.
He was able to breathe on his own for 35 min yesterday until he started getting agitated again which made his breathing labored. They'll do another one today but the docs had already concluded today that a tracheostomy is warranted for three reasons: 1) they expect Andre to require some ventilator assistance with his breathing until the dead space in his lung resolve itself; 2) longer term ventilation is best done with a tracheostomy tube than an endotracheal tube, and; 3) the tracheostomy tube will probably lessen his agitation everytime they take him off sedation.
The tracheostomy will likely happen early this week since the July 4th weekend is coming up. The risks are the same as in any surgery--bleeding and infection--but the procedure itself is relatively minor as it can even be performed in his hospital room.
Everything else about Andre's condition--his kidney and liver functions, the infections--are moving in the right direction albeit in baby steps. He recognizes me and he responds to questions during those few minutes when his sedation has worn off. He's still there which is the most reassuring thing in this whole debacle. I hope that on July 3rd, he'll be more cognitive so I can greet him a "Happy Anniversary".
He was able to breathe on his own for 35 min yesterday until he started getting agitated again which made his breathing labored. They'll do another one today but the docs had already concluded today that a tracheostomy is warranted for three reasons: 1) they expect Andre to require some ventilator assistance with his breathing until the dead space in his lung resolve itself; 2) longer term ventilation is best done with a tracheostomy tube than an endotracheal tube, and; 3) the tracheostomy tube will probably lessen his agitation everytime they take him off sedation.
The tracheostomy will likely happen early this week since the July 4th weekend is coming up. The risks are the same as in any surgery--bleeding and infection--but the procedure itself is relatively minor as it can even be performed in his hospital room.
Everything else about Andre's condition--his kidney and liver functions, the infections--are moving in the right direction albeit in baby steps. He recognizes me and he responds to questions during those few minutes when his sedation has worn off. He's still there which is the most reassuring thing in this whole debacle. I hope that on July 3rd, he'll be more cognitive so I can greet him a "Happy Anniversary".
Friday, June 26, 2009
ICU Day 8 - PM
Andre's Versed sedation for tonight is 2x his usual dose. They need him to be more rested for tomorrow's breathing trial. The respiratory tech again had to make adjustments to the ventilator settings because Andre's blood CO2 level was increasing. High CO2 level leads to lower pH of the blood or acidosis which can be causing the V-tachs. Apparently, Andre's heart had also exhibited SVTs.
A step forward for Andre this afternoon is the removal of the second (and last) chest tube. This should make Andre even more comfortable. I hope it's enough that he'll be less agitated when they do the spontaneous breathing trials this weekend. We would rather that the docs not resort to a tracheostomy. My darling had been through so much already. But as we always say to one another, "we have to do what we have to do".
A step forward for Andre this afternoon is the removal of the second (and last) chest tube. This should make Andre even more comfortable. I hope it's enough that he'll be less agitated when they do the spontaneous breathing trials this weekend. We would rather that the docs not resort to a tracheostomy. My darling had been through so much already. But as we always say to one another, "we have to do what we have to do".
ICU Day 8
One step forward, two steps back.
That seems to be our story. It's only 10:45 AM in the morning and a lot of things had happened.
First the good news:
The other kind of news:
That seems to be our story. It's only 10:45 AM in the morning and a lot of things had happened.
First the good news:
- The result of Andre's bronchoscopy (bronchoalveolar lavage) showed no infection. They didn't see any bacteria, fungus or virus, and because of this, he is no longer under respiratory isolation. We don't have to don facemask, gloves, and protective gown to enter Andre's room. I can now touch and kiss him.
- His kidney function continues to improve.
The other kind of news:
- Even though they didn't detect any infectious agent in his lungs, the docs think there's inflammation there that needs to be controlled. The inflammation is what they call BOOP ( bronchiolitis obliterans organizing pneumonia) which can contribute to the significant dead space in his lungs. To address this issue, they will increase Andre's steriod dose from 70 mg every other day to everyday (maybe more if they don't see any improvement either physiologically or radiographically).
- He was so distressed this morning that his bedding was soaked in his sweat. He also had another V-tach which happened while the docs where checking on him. The V-tach could have been caused by having too much fluid in his system, having high CO2 levels in his bloodstream, the Haldol, or any number of things. The good thing is that it resolved itself afterAndre's sedation was increased and they made changes to the ventilator settings. He's more comfortable now.
- They're not going to do any breathing trials today because of his condition this morning. They'll do them again over the weekend. If by Monday morning the pulmonary critical care docs decide that he's nowhere near getting extubated, they'll call in the EENT surgeons to do a tracheostomy. They do this for patients that are difficult to extubate. The patient would still be on a ventilator after the procedure. Tracheostomy tubes are preferred over regular breathing tubes because of several reasons: it makes the patient feel more comfortable because there's nothing in the mouth that can activate the gag reflex; no straps around the head are required to hold the tube in place; there's less chance for erosion to happen in the mouth area; and there is decreased chance of damaging the vocal cords which can happen with regular breathing tubes.
- His white blood count remains steady but low.
Thursday, June 25, 2009
ICU Day 7
It's a relatively good day for Andre. He did a spontaneous breathing trial--him breathing on his own--today that lasted for about 35 min. The CO2 level in his blood after the test was still higher than normal but it was close. Shortly after the test, the pulmonary critical care doc decided to put the ventilator on an as-needed mode (I think he called it pressure assist). Andre managed to breathe on his own for another 2 hours before he "woke up" agitated from sedation. Everyone was happy with the work he had done today. I'm happy too.
The preliminary results of Andre's bronchoscopy so far shows no bacterial infection in his right lung. As a precautionary measure, they added another antibiotic--Vancomycin--on his meds list. Andre's kidney function is also showing signs of improvement which is another reason for me to be happy.
For tomorrow, it will be more of the same for Andre--spontaneous breathing trials coupled with the sedation level balancing act. As for me, I need to start packing what's left of our Seattle home. It's mostly Andre's garage/workshop that I need to move. If our realtor doesn't drop the ball, the signing to close on our house sale is on the 2nd of July. It'll be a busy weekend.
The preliminary results of Andre's bronchoscopy so far shows no bacterial infection in his right lung. As a precautionary measure, they added another antibiotic--Vancomycin--on his meds list. Andre's kidney function is also showing signs of improvement which is another reason for me to be happy.
For tomorrow, it will be more of the same for Andre--spontaneous breathing trials coupled with the sedation level balancing act. As for me, I need to start packing what's left of our Seattle home. It's mostly Andre's garage/workshop that I need to move. If our realtor doesn't drop the ball, the signing to close on our house sale is on the 2nd of July. It'll be a busy weekend.
Wednesday, June 24, 2009
ICU Day 6
Sorry for the late posting. I went out for a hearty dinner with a former colleague who is also a very close friend of ours. It was good to take a break from the hospital, and I know Andre didn't mind.
Andre had a relatively busy day today. He had a bronchoscopy early this morning. The did this so they can find out if the spots they saw on his chest X-rays are from another infection. I got to watch how it's done. It involves running a fiber optic cable down the mouth all the way to the lungs. Once in the area of interest in the lungs, the doctor can either get a biopsy or squirt some saline solution which they recollect (minimum of 30 ml) for examination. It's the latter procedure--called bronchoalveolar lavage--that they performed on Andre. They'll do molecular diagnostics (e.g., PCR) and culture of the washes to identify the infectious agent. Once they know, the infectious disease docs can make a rational decision on the antibiotic cocktail that the patient should be on. I'll let you know when the results are in.
Another thing they did with Andre is to change the device that holds the breathing and feeding tubes. Andre was quite fiesty this morning when they were doing his oral care. He was biting hard on the tubes, and was making the ventilator alarm to go off. The new device has a built-in bite guard.
They lowered the dose of Versed and Fentanyl so that Andre can be easily awaken when they do the breathing trials. To combat his agitation, they've added Clonazopam to the mix. They did not do a breathing trial today because he was too sedated after the bronchoscopy. He managed to wake up and, according to the nurse on duty, was responding to questions. I missed this bit because I was at home showering and doing the laundry. They said they'll wake up Andre from sedation early tomorrow so they can do the breathing test. I promised him that I'll be there. I hope he'll do well.
Andre had a relatively busy day today. He had a bronchoscopy early this morning. The did this so they can find out if the spots they saw on his chest X-rays are from another infection. I got to watch how it's done. It involves running a fiber optic cable down the mouth all the way to the lungs. Once in the area of interest in the lungs, the doctor can either get a biopsy or squirt some saline solution which they recollect (minimum of 30 ml) for examination. It's the latter procedure--called bronchoalveolar lavage--that they performed on Andre. They'll do molecular diagnostics (e.g., PCR) and culture of the washes to identify the infectious agent. Once they know, the infectious disease docs can make a rational decision on the antibiotic cocktail that the patient should be on. I'll let you know when the results are in.
Another thing they did with Andre is to change the device that holds the breathing and feeding tubes. Andre was quite fiesty this morning when they were doing his oral care. He was biting hard on the tubes, and was making the ventilator alarm to go off. The new device has a built-in bite guard.
They lowered the dose of Versed and Fentanyl so that Andre can be easily awaken when they do the breathing trials. To combat his agitation, they've added Clonazopam to the mix. They did not do a breathing trial today because he was too sedated after the bronchoscopy. He managed to wake up and, according to the nurse on duty, was responding to questions. I missed this bit because I was at home showering and doing the laundry. They said they'll wake up Andre from sedation early tomorrow so they can do the breathing test. I promised him that I'll be there. I hope he'll do well.
Tuesday, June 23, 2009
ICU Day 5
Andre is still heavily sedated. He seems to be calmer today as well.
He did better on his spontaneous breathing trial (SBT) today than yesterday, but it is still not good enough to be off the ventilator. The respiratory technician added a humidifier to the ventilator setup. I'm taking this as a sign that Andre will probably have the breathing tubes for several more days. I hope I'm wrong.
They did a chest X-ray today to see if the chest tubes that drain the fluids and check for air leaks in the lungs can be taken off. Everyone of Andre's doctors agree that getting these tubes off will decrease Andre's discomfort. I hope the surgeon's will take them off soon.
A sonographer was also called to do "Doppler ultrasound" to check for clots in his legs (DVT). Her unofficial verdict--because it's the radiologist who does the read--is that there are no clots in his legs. Thank God that's one less possible cause for a pulmonary embolism. As I mentioned in yesterday's blog, the docs can not confirm if the dead space in Andre's lungs is due to an existing pulmonary embolism because they can't do a CT with radio-contrast due to his poor kidney function. I know they are closely monitoring his fluid intake to get his kidneys up to speed. I forgot to ask what their plan is to address the dead space in his lungs (NOTE TO SELF: ask this question to the pulmonary critical care doc when he comes in for his 2nd visit of the day). I hope there is a plan.
Andre's attending oncologist also spoke to me today. She's not one to cite statistics, but I think she was trying to impress on me the precariousness of Andre's condition--some people recover and some don't. She mentioned all the things that they're addressing. According to her, the medical team's main concern is still the infection that he has in his lungs. They're worried that the pathologist not only confirmed the fungal and viral (CMV) infection in his lungs, but also found Gram-negative bacteria (definitely Pseudomonas aeruginosa; I don't know if there are others). Andre continues to be on antibacterial (Levofloxacin, Imipenem and cilastatin), antifungal (Amphotericin B and Posaconazole), and antiviral (Foscarnet) medication. The better way to fight the infection is for Andre's bone marrow to start producing white blood cells again in sufficient numbers. He's been able to do this before but not currently probably because of the myelosuppressive side effects of some of the drugs that he was/is on. The docs have pared down Andre's medication to the essentials. I hope this, plus the G-CSF shots that they've been giving him since before the surgery, will work soon.
I continue to hope.
He did better on his spontaneous breathing trial (SBT) today than yesterday, but it is still not good enough to be off the ventilator. The respiratory technician added a humidifier to the ventilator setup. I'm taking this as a sign that Andre will probably have the breathing tubes for several more days. I hope I'm wrong.
They did a chest X-ray today to see if the chest tubes that drain the fluids and check for air leaks in the lungs can be taken off. Everyone of Andre's doctors agree that getting these tubes off will decrease Andre's discomfort. I hope the surgeon's will take them off soon.
A sonographer was also called to do "Doppler ultrasound" to check for clots in his legs (DVT). Her unofficial verdict--because it's the radiologist who does the read--is that there are no clots in his legs. Thank God that's one less possible cause for a pulmonary embolism. As I mentioned in yesterday's blog, the docs can not confirm if the dead space in Andre's lungs is due to an existing pulmonary embolism because they can't do a CT with radio-contrast due to his poor kidney function. I know they are closely monitoring his fluid intake to get his kidneys up to speed. I forgot to ask what their plan is to address the dead space in his lungs (NOTE TO SELF: ask this question to the pulmonary critical care doc when he comes in for his 2nd visit of the day). I hope there is a plan.
Andre's attending oncologist also spoke to me today. She's not one to cite statistics, but I think she was trying to impress on me the precariousness of Andre's condition--some people recover and some don't. She mentioned all the things that they're addressing. According to her, the medical team's main concern is still the infection that he has in his lungs. They're worried that the pathologist not only confirmed the fungal and viral (CMV) infection in his lungs, but also found Gram-negative bacteria (definitely Pseudomonas aeruginosa; I don't know if there are others). Andre continues to be on antibacterial (Levofloxacin, Imipenem and cilastatin), antifungal (Amphotericin B and Posaconazole), and antiviral (Foscarnet) medication. The better way to fight the infection is for Andre's bone marrow to start producing white blood cells again in sufficient numbers. He's been able to do this before but not currently probably because of the myelosuppressive side effects of some of the drugs that he was/is on. The docs have pared down Andre's medication to the essentials. I hope this, plus the G-CSF shots that they've been giving him since before the surgery, will work soon.
I continue to hope.
Monday, June 22, 2009
ICU Day 4
Today has been a difficult day for my husband. Andre had a V-tach episode at around 8:30 AM this morning. It took the docs about half-an-hour to get it under control with Versed being the one that worked. The Versed was supposed to be a pre-medication prior to using a defibrillator because they thought they had to shock him to get his heart to slow down; good thing they never did. The docs think that the V-tach is likely a stress response of the heart due to surgery and pain, and not due to other potential sources (e.g., an infection or an underlying heart problem). They've made changes to his sedation cocktail (taking out Propofol and Haldol, and sticking with just Versed and Fentanyl). They've also taken away some of the drugs that they suspect might be suppressing his bone marrow's white blood cell production. They need the marrow to start up so that he can better fight the lung infection that he has (fungal, bacterial, and CMV), and also to help heal the wounds from surgery. Another reason they've change some of his medication is that his kidney function is not as good as before the surgery.
Andre's lung does have a significant volume of dead space (basically air goes into his lung, but no gas exchange happens because the blood vessels are not "contacting" with the lung's alveoli). A potential cause is a blood clot in his lung which they can't confirm by imaging because a CT scan of the lung will require a contrast reagent that is bad for the kidneys. They'll do some imaging of his legs tomorrow to see if there are clots, and if there are, they can put a filter in him to make sure that these don't make his already precarious situation worse.
I asked the doctor directly if he thinks it's time to call in his family. He said "no", and then assured me that he'll be forthright about it when it's time.
Andre is still sedated and sleeping. I hope he's having some wonderful dreams--maybe of him riding his motorcycle, and maybe of me.
Andre's lung does have a significant volume of dead space (basically air goes into his lung, but no gas exchange happens because the blood vessels are not "contacting" with the lung's alveoli). A potential cause is a blood clot in his lung which they can't confirm by imaging because a CT scan of the lung will require a contrast reagent that is bad for the kidneys. They'll do some imaging of his legs tomorrow to see if there are clots, and if there are, they can put a filter in him to make sure that these don't make his already precarious situation worse.
I asked the doctor directly if he thinks it's time to call in his family. He said "no", and then assured me that he'll be forthright about it when it's time.
Andre is still sedated and sleeping. I hope he's having some wonderful dreams--maybe of him riding his motorcycle, and maybe of me.
Sunday, June 21, 2009
ICU Day 3
I have no idea when the pulmonary doctors will take Andre off the ventilator. His arterial blood gas from this morning still showed elevated CO2 even though he is relaxed and fully sedated. The docs are thinking it might be due to having too much carbohydrates in his TPN (his "food" that goes directly into his bloodstream), or more likely due to Andre having significant alveolar dead space. Unfortunately, the people who can measure the latter only works on weekdays. As for the TPN issue, they want to increase what they started yesterday which is delivery the nutrients via the feeding tube . They first need to review what the GI docs have found last week in terms of his GVHD in the gut.
In the wee hours of the morning, Andre had an episode that the docs refer to as "ICU delirium". They gave him an extra dose of Haldol to relax him. What worries me about his current level of sedation is his lack of responsiveness to the folks in the room. As an example, he "woke up" half-an hour ago (1 PM) for about 10 minutes but I was not able to communicate with him. He just looked dazed and not there--it scared me to think that his mind isn't there. I want my old, feisty, middle finger-giving Andre back.
In the wee hours of the morning, Andre had an episode that the docs refer to as "ICU delirium". They gave him an extra dose of Haldol to relax him. What worries me about his current level of sedation is his lack of responsiveness to the folks in the room. As an example, he "woke up" half-an hour ago (1 PM) for about 10 minutes but I was not able to communicate with him. He just looked dazed and not there--it scared me to think that his mind isn't there. I want my old, feisty, middle finger-giving Andre back.
Saturday, June 20, 2009
ICU Day 2
Andre is still intubated. The pulmonary critical care docs decided that Andre's breathing is still too labored to be off the ventilator. When they did the spontaneous breathing trial this morning, Andre was breathing great at the start (he was taking in as much air in his lung as any normal adult according to the docs). But several minutes into it, he started getting agitated which bumped up his blood pressure, increased his breathing, and put his arterial blood gas in the abnormal range (the CO2 concentration was the main discrepancy).
Because of the anxiety that Andre is exhibiting, they started him on Haldol. He's getting it every 4 hrs if I'm not mistaken. I hope the Haldol will do its magic and that the docs can take out the tubes tomorrow. They've also started giving him food via his feeding tube, on top of the TPN that he's getting by way of his central line.
It's 10:20 PM right now and Andre is sleeping. I'm staying the night in case he ask for me.
Because of the anxiety that Andre is exhibiting, they started him on Haldol. He's getting it every 4 hrs if I'm not mistaken. I hope the Haldol will do its magic and that the docs can take out the tubes tomorrow. They've also started giving him food via his feeding tube, on top of the TPN that he's getting by way of his central line.
It's 10:20 PM right now and Andre is sleeping. I'm staying the night in case he ask for me.
Andre's gifts
Andre gave two gifts this morning.
When I checked my cell phone at 8 AM, I noticed a missed call and a voice message time stamped 2:18 AM. The caller was Andre's night-shift nurse, Ken, and his message was that Andre was adamantly asking for me. Ken's phone call did not wake me up because I had inadvertently left my phone on vibrate. Imagine how my heart had felt when I heard that message. It broke my heart to hear that he wanted me and I wasn't there. So after listening to the message, I hurried to the hospital.
When I got here at UW hospital this morning, he was as awake as one can be with the painkiller and the sedative on tap. I communicated with him by asking him questions that required only a yes-or-no answer. But he gestured that he wanted to write down something. After 5 minutes of illegible writing, I told him to just relax which he did.
Half-an-hour later, Andre's oncology doc and PA came in the room for their morning rounds. As they were talking to him, he started gesturing that he wants to write something. So I took the dry-erase board off the wall and gave Andre a marker. I thought he was going to write down what he wanted to say to his doctor--whether he was in pain, nauseous, cold, hot, or something else. Instead he wrote down "I LOVE U" and started pointing at me. My heart just melted and my knees went weak. I had to hold back my tears since I didn't want the other people in the room to witness my crying. Below is Andre's first gift of the day (pardon my lack of picture-taking skill).
Andre's second gift was to the daytime nurse. He gave her the middle finger when she was being pushy (she was really just doing her job). That's my Andre!
When I checked my cell phone at 8 AM, I noticed a missed call and a voice message time stamped 2:18 AM. The caller was Andre's night-shift nurse, Ken, and his message was that Andre was adamantly asking for me. Ken's phone call did not wake me up because I had inadvertently left my phone on vibrate. Imagine how my heart had felt when I heard that message. It broke my heart to hear that he wanted me and I wasn't there. So after listening to the message, I hurried to the hospital.
When I got here at UW hospital this morning, he was as awake as one can be with the painkiller and the sedative on tap. I communicated with him by asking him questions that required only a yes-or-no answer. But he gestured that he wanted to write down something. After 5 minutes of illegible writing, I told him to just relax which he did.
Half-an-hour later, Andre's oncology doc and PA came in the room for their morning rounds. As they were talking to him, he started gesturing that he wants to write something. So I took the dry-erase board off the wall and gave Andre a marker. I thought he was going to write down what he wanted to say to his doctor--whether he was in pain, nauseous, cold, hot, or something else. Instead he wrote down "I LOVE U" and started pointing at me. My heart just melted and my knees went weak. I had to hold back my tears since I didn't want the other people in the room to witness my crying. Below is Andre's first gift of the day (pardon my lack of picture-taking skill).
Andre's second gift was to the daytime nurse. He gave her the middle finger when she was being pushy (she was really just doing her job). That's my Andre!
Friday, June 19, 2009
ICU Day 1 - PM
The pulmonary critical care (PCC) docs decided to keep Andre attached to the ventilator. Results of his several spontaneous breathing tests (they turn off the ventilator and have him on “sedation vacation” so Andre can be awake) show that he’s doing great in terms of his respiratory rate and his blood gases. But because of the pain and discomfort, Andre then gets highly agitated and his blood pressure shoots up. The docs would rather take out his breathing tube tomorrow morning when they’ll have the whole day to monitor him instead of doing it tonight. They think it’s also helpful for Andre’s chest muscles to relax for another night by having the machine assist with his breathing. They think this will help synchronize his left- and right-hand sides when he breathes.
Earlier today, the PCC docs called an anesthesiologist for a consult. They wanted to know if Andre can have an epidural. The anesthesiologist said that an epidural would be risky because of Andre’s low platelet and white blood cell counts, so the pain meds will just have to stay systemic as is the case now (via I.V. or through Andre’s central line). He also said that the pain management will have to be done by the PCC docs. He recommended to the PCC docs to use Dilaudid on a PCA (delivery of the pain med is controlled by the patient with a push of a button) but since Andre is not conscious enough, this might be tricky. We’ll see how they’ll do this tomorrow.
It’s a little past 8 PM and I’m still here in Andre’s room because I wanted to check with the surgeons when they go on their last round of the day (they’re supposed to do one in the morning and one at the end of the day). But guess what? One of the PCC docs just informed me that if the surgeons haven’t come by yet, they are likely gone for the day. His advice: go home and come in early to catch the surgeons’ when they do their morning rounds.
ICU Day 1 - AM
First off, I want to apologize for not responding to those who had left me messages. It's been a crazy 24-hr.
Andre still has his breathing tube and chest tubes. He is sleeping right now.
He was semi-awake when I came in this morning. He wanted to communicate more than the head nods and shakes he's able to do. He asked for pen and paper but his writing was illegible--not being able to see what he's writing probably didn't help. I wish it had crossed my mind that communicating can be problematic when you're intubated, and Andre and I could have devised a way of doing so prior to the surgery.
At about 10:30 AM, I finally saw the surgical team. They apologized for not seeing me yesterday and gave the expected excuse that they were busy with other surgeries. They told me that they were conservative with the surgery. They only took out two "wedges" in his left lung (not the full lower lobe or the full left lung as was originally considered), and that the surgery itself went without a hitch. They looked at the two chest tubes sticking out of Andre's left flank, and they said he's doing great from their standpoint. Their only responsibility right now are those chest tubes which will come out in about a week, if I'm not mistaken. They will be back again later today to check on Andre.
As the surgeons were about to leave, Andre started getting agitated. His pain meds must have been wearing off (he's currently on a Fentanyl drip for pain and getting Propofol via I.V. as a sedative) and he started trying to get the tubes out of his mouth. The ICU nurse had to strap down his right arm while I was holding down his left arm. It's good to note that Andre is strong enough that he's able to push back against me but it's bad for his breathing to be exerting that much. As the nurse was delivering a bolus of pain meds into Andre, the pulmonary critical care docs came in. They are the ones in-charge of when he'll get extubated. Their main concern is still the same: strike the right balance between pain control, sedation, and consciousness. If they take out the tubes but Andre is still in a lot of pain, then they expect his breathing to become labored which might necessitate him getting intubated again. On the other hand, if he is too sedated, they can not take out the tubes because he might not breathe strongly enough. They've called for the anesthesiologist to look at Andre and see if an epidural can be put in. The anesthesiologist during the surgery yesterday decided against it because Andre's platelet count was low. He was given platelets this morning so an epidural should be possible now.
I'll post more later this afternoon.
Andre still has his breathing tube and chest tubes. He is sleeping right now.
He was semi-awake when I came in this morning. He wanted to communicate more than the head nods and shakes he's able to do. He asked for pen and paper but his writing was illegible--not being able to see what he's writing probably didn't help. I wish it had crossed my mind that communicating can be problematic when you're intubated, and Andre and I could have devised a way of doing so prior to the surgery.
At about 10:30 AM, I finally saw the surgical team. They apologized for not seeing me yesterday and gave the expected excuse that they were busy with other surgeries. They told me that they were conservative with the surgery. They only took out two "wedges" in his left lung (not the full lower lobe or the full left lung as was originally considered), and that the surgery itself went without a hitch. They looked at the two chest tubes sticking out of Andre's left flank, and they said he's doing great from their standpoint. Their only responsibility right now are those chest tubes which will come out in about a week, if I'm not mistaken. They will be back again later today to check on Andre.
As the surgeons were about to leave, Andre started getting agitated. His pain meds must have been wearing off (he's currently on a Fentanyl drip for pain and getting Propofol via I.V. as a sedative) and he started trying to get the tubes out of his mouth. The ICU nurse had to strap down his right arm while I was holding down his left arm. It's good to note that Andre is strong enough that he's able to push back against me but it's bad for his breathing to be exerting that much. As the nurse was delivering a bolus of pain meds into Andre, the pulmonary critical care docs came in. They are the ones in-charge of when he'll get extubated. Their main concern is still the same: strike the right balance between pain control, sedation, and consciousness. If they take out the tubes but Andre is still in a lot of pain, then they expect his breathing to become labored which might necessitate him getting intubated again. On the other hand, if he is too sedated, they can not take out the tubes because he might not breathe strongly enough. They've called for the anesthesiologist to look at Andre and see if an epidural can be put in. The anesthesiologist during the surgery yesterday decided against it because Andre's platelet count was low. He was given platelets this morning so an epidural should be possible now.
I'll post more later this afternoon.
Thursday, June 18, 2009
Today's the day
For those of you who are not on Facebook, here's an update.
11:30 PM -- I'm back in our Seattle house. I'm home late because I opted to stay with Andre and wait for the surgeons to visit him. I was told by the ICU night nurse at about 9:20 PM that they'll check in on Andre. The nurse told them that I'm still around and would appreciate talking with them. I stayed for an hour-and-a-half longer but they never showed up. I decided against spending the night in the ICU with Andre since he's still heavily sedated. He would sometimes wake up from the drug-induced stupor, and would reflexively try to reach for the breathing tube to take it out. I can tell he's experiencing a lot discomfort and suffering whenever the sedative and pain meds go down a certain level. It's difficult to watch. The ICU night nurse who was still trying to find the proper amount of sedation told me that most patients don't remember the discomfort because one of the meds have an amnesic effect. I hope he will be one of those who do forget.
6:20 PM -- Andre is back in the oncology floor (8NE) but he is the ICU, as expected. I was in the surgery waiting room from 2:15 PM. At about 3:40 PM, Andre's daytime nurse called me to say that Andre is out of surgery and that I should wait for one of his surgeons to come talk to me about how it went. Two hours later, there was still no surgeon. I received a call from Andre's new nurse (the ICU nurse) at at 5:45 PM telling me that he is now back in the oncology floor of the hospital. I'm disturbed by the insensitivity of these surgeons, but I'll be patient and reserve the ass whoppin for tomorrow. Andre seems to be okay because when I first saw him, he was responding to the questions the nurse was asking him (If he was in pain? If he needed more pain meds? He answered yes to both). He has a breathing tube and is back to being fully sedated. The ICU nurse told me that her goal for the next couple of hours is to find the right balance between managing Andre's discomfort and keeping him responsive to questions. The last bit is important in judging how soon he be off the breathing tube.
11:30 AM -- I'm back in Andre's hospital room after the nurse and I transported Andre to the OR. This is it folks. Keep rooting for my man.
10:45 AM -- We're still in our hospital room waiting. The transfusion is over and Andre is waking up from the pre-transfusion medication-induced stupor.
8:50 AM -- Andre is sleeping will being transfused with whole blood. His nurse just informed us that he is the second person scheduled today with the cardio-thoracic surgery. The first one is not expected to finish until 10:30 AM.
11:30 PM -- I'm back in our Seattle house. I'm home late because I opted to stay with Andre and wait for the surgeons to visit him. I was told by the ICU night nurse at about 9:20 PM that they'll check in on Andre. The nurse told them that I'm still around and would appreciate talking with them. I stayed for an hour-and-a-half longer but they never showed up. I decided against spending the night in the ICU with Andre since he's still heavily sedated. He would sometimes wake up from the drug-induced stupor, and would reflexively try to reach for the breathing tube to take it out. I can tell he's experiencing a lot discomfort and suffering whenever the sedative and pain meds go down a certain level. It's difficult to watch. The ICU night nurse who was still trying to find the proper amount of sedation told me that most patients don't remember the discomfort because one of the meds have an amnesic effect. I hope he will be one of those who do forget.
6:20 PM -- Andre is back in the oncology floor (8NE) but he is the ICU, as expected. I was in the surgery waiting room from 2:15 PM. At about 3:40 PM, Andre's daytime nurse called me to say that Andre is out of surgery and that I should wait for one of his surgeons to come talk to me about how it went. Two hours later, there was still no surgeon. I received a call from Andre's new nurse (the ICU nurse) at at 5:45 PM telling me that he is now back in the oncology floor of the hospital. I'm disturbed by the insensitivity of these surgeons, but I'll be patient and reserve the ass whoppin for tomorrow. Andre seems to be okay because when I first saw him, he was responding to the questions the nurse was asking him (If he was in pain? If he needed more pain meds? He answered yes to both). He has a breathing tube and is back to being fully sedated. The ICU nurse told me that her goal for the next couple of hours is to find the right balance between managing Andre's discomfort and keeping him responsive to questions. The last bit is important in judging how soon he be off the breathing tube.
11:30 AM -- I'm back in Andre's hospital room after the nurse and I transported Andre to the OR. This is it folks. Keep rooting for my man.
10:45 AM -- We're still in our hospital room waiting. The transfusion is over and Andre is waking up from the pre-transfusion medication-induced stupor.
8:50 AM -- Andre is sleeping will being transfused with whole blood. His nurse just informed us that he is the second person scheduled today with the cardio-thoracic surgery. The first one is not expected to finish until 10:30 AM.
Wednesday, June 17, 2009
Surgery redux
Tomorrow, Thursday, at 10:30 AM. That's when Andre's surgery will happen if the cardio-thoracic surgeons will not pull a fast one on us. The other specialists had managed to convinced the surgeons that the WBC count they're asking for is not applicable to patients like Andre who are on immunosuppression. Plus, it's nonsensical for them to worry about the "possibility" of infection when the whole reason for the surgery is to get rid of one.
On a different note, Andre was allowed to have some 15-minutes of fresh air yesterday. Unfortunately, all the gardens around the hospital are closed off because of construction, so we ended up just sitting by the sidewalk near the hospital shuttle stop. And as it turned out, the reprieve was only good for 1 day. We'll have to re-negotiate him being allowed outside of his hospital room.
On a different note, Andre was allowed to have some 15-minutes of fresh air yesterday. Unfortunately, all the gardens around the hospital are closed off because of construction, so we ended up just sitting by the sidewalk near the hospital shuttle stop. And as it turned out, the reprieve was only good for 1 day. We'll have to re-negotiate him being allowed outside of his hospital room.
Tuesday, June 16, 2009
Andre update
It's a little past 11:30 AM. I've just finish chatting with the attending doc and the PA (a medical practitioner peculiar to the US) since Andre's completely knocked out by the anti-anxiety medication he took an hour ago.
Andre has indicated to the PA early this morning that he wants to leave the hospital. It is his right and I perfectly understand where he is coming from, but I know it's not the medically correct thing to do . The doctor and the PA promised to look into at least allowing Andre out of his room where he's been coop up since May 10 (outside of the 3 days that he was sent home, he's been in the UW hospital since April 28 and he was also not allowed to leave his room during that first hospital stay). Not being able to leave a cramp hospital room for that long will drive anyone nuts. Everyone directly involved in Andre's care appreciates his patience and understands that it's running short. We'll wait for them to talk to the oncology floor director to make an exception in his case.
I'm also doing my best to press the doctors to get the surgery done. I think part of Andre's reasoning for wanting to go home is that "nothing" is moving forward with the surgery carrot that they've dangled for the last two weeks. Most of you who've met Andre knows that he is not one to just sit and wait--he's a man of action. And now, the tedium is just too much for him to bear.
Hopefully, the next update will have better news.
Andre has indicated to the PA early this morning that he wants to leave the hospital. It is his right and I perfectly understand where he is coming from, but I know it's not the medically correct thing to do . The doctor and the PA promised to look into at least allowing Andre out of his room where he's been coop up since May 10 (outside of the 3 days that he was sent home, he's been in the UW hospital since April 28 and he was also not allowed to leave his room during that first hospital stay). Not being able to leave a cramp hospital room for that long will drive anyone nuts. Everyone directly involved in Andre's care appreciates his patience and understands that it's running short. We'll wait for them to talk to the oncology floor director to make an exception in his case.
I'm also doing my best to press the doctors to get the surgery done. I think part of Andre's reasoning for wanting to go home is that "nothing" is moving forward with the surgery carrot that they've dangled for the last two weeks. Most of you who've met Andre knows that he is not one to just sit and wait--he's a man of action. And now, the tedium is just too much for him to bear.
Hopefully, the next update will have better news.
Monday, June 15, 2009
"Non"-Surgery day updates
This is Ed. I'll be updating this specific post every time I hear some news regarding Andre's surgery. Thanks for all the positive vibes, thoughts, prayers, and support that you've been sending our way.
3:40 PM -- WE ARE PISSED OFF!!! Andre's oncologist just gave us news that the surgical team does NOT want to operate on him today because his white blood cell (WBC) count is below their threshold. Every specialist on Andre's health care team (hem/onc, infectious disease, pulmonary, etc.) is fine with the procedure because they deal with oncology patients all the time who typically have low blood counts, but they've all been trumped by the folks who will do the actual cutting. The team is changing some of Andre's meds to help bump up his WBC numbers but if the surgery doesn't happen tomorrow, Thursday will be the earliest it can happen this week (if it can even happen this week). It took Andre and I several days to wrap our heads around this surgery, and then they come in today and put us back close to where we've started mentally speaking. It took a lot of self-control for Andre to not shoot the messenger.
2:05 PM -- Still waiting. Andre's nap is occasionally disturbed by warning messages from the overly-sensitive pumps he's attached to ("air-in-line") or by the urge to pee (they've been running fluids in him like crazy). The Social Worker was just in here because we had questions about his durable power of attorney for health care, his advance directive, etc.
11:50 AM -- We're still waiting. His oncology team just dropped by to tell him that the results of the chest CT scan was encouraging. The 41-mm lesion on his lungs' lower left lobe is now down to about 35 mm. Some of the lucencies (bright spots) on the upper lobe of the left lung seems to be smaller too. Nonetheless, the lower left lobe of the lung still has to go. The CT scan of his head showed no signs of fungal infection (this is a very good thing). His oncology team had started switching his medications to the IV-version.
10:40 AM -- We are still in his old room. Andre is napping after taking some Ativan (for nausea) and sucking on a Fentanyl lollipop (for pain). He had a chest CT done yesterday afternoon to help the surgeons decide how much surgery needs to be done; we're still waiting for the results. We haven't seen neither oncology nor surgical teams so we don't have any details yet. It's a waiting game right now which is a bit tough since Andre has been NPO since midnight.
3:40 PM -- WE ARE PISSED OFF!!! Andre's oncologist just gave us news that the surgical team does NOT want to operate on him today because his white blood cell (WBC) count is below their threshold. Every specialist on Andre's health care team (hem/onc, infectious disease, pulmonary, etc.) is fine with the procedure because they deal with oncology patients all the time who typically have low blood counts, but they've all been trumped by the folks who will do the actual cutting. The team is changing some of Andre's meds to help bump up his WBC numbers but if the surgery doesn't happen tomorrow, Thursday will be the earliest it can happen this week (if it can even happen this week). It took Andre and I several days to wrap our heads around this surgery, and then they come in today and put us back close to where we've started mentally speaking. It took a lot of self-control for Andre to not shoot the messenger.
2:05 PM -- Still waiting. Andre's nap is occasionally disturbed by warning messages from the overly-sensitive pumps he's attached to ("air-in-line") or by the urge to pee (they've been running fluids in him like crazy). The Social Worker was just in here because we had questions about his durable power of attorney for health care, his advance directive, etc.
11:50 AM -- We're still waiting. His oncology team just dropped by to tell him that the results of the chest CT scan was encouraging. The 41-mm lesion on his lungs' lower left lobe is now down to about 35 mm. Some of the lucencies (bright spots) on the upper lobe of the left lung seems to be smaller too. Nonetheless, the lower left lobe of the lung still has to go. The CT scan of his head showed no signs of fungal infection (this is a very good thing). His oncology team had started switching his medications to the IV-version.
10:40 AM -- We are still in his old room. Andre is napping after taking some Ativan (for nausea) and sucking on a Fentanyl lollipop (for pain). He had a chest CT done yesterday afternoon to help the surgeons decide how much surgery needs to be done; we're still waiting for the results. We haven't seen neither oncology nor surgical teams so we don't have any details yet. It's a waiting game right now which is a bit tough since Andre has been NPO since midnight.
Friday, June 12, 2009
Tuesday, June 09, 2009
Batman speaks.
This is Andre. Simple facts in this post, mainly because I've been drugged and tired and 'fat reduced" for some time. I checked in to UW Hospital on May 7. Today is June 9. Do the math.
Body weight, 138# with daily TPN. Holding steady.
GI system not working. Salmon is the only thing I can eat, practically. It's available, but it's a hospital kitchen. "Overdone" is the only way it's served.
Blood system, still not working. Deja ju, all over again.
Isolation. I'm not allowed out of this room except for procedures. Unless I'm being X-rayed, I'm a prisoner.
Rashes, infections, and afflictions abound, the result of living in the real world with no immune system.
So I walked in here and they got most of it under control this month. But sometime during my stay I inhaled a tiny little aspergillis spore and it settled in my lungs. Since it's settled into its new home, it's managed to carve out a nice little 41mm cavern out of my left lung.
And then the doctors all went into panic mode. Duh!
It was announced to me. "We're going to take your lung." It was suggested they'd try to get surgery to schedule me Tuesday (Today).
Well, after a lot of headbanging, a lot of brainwork, asking a lot of questions, it looks like surgery might happen next week sometime late IF it happens.
So, I get to wait in the hospital for another week, drugged until I quite literally "freak out". Given blood, treatments, platelets. Maybe surgery a few days later, then recovery time. Dunno what that means, really. I'm looking at another 30 days, but we'll work for the best. Will advise.
Body weight, 138# with daily TPN. Holding steady.
GI system not working. Salmon is the only thing I can eat, practically. It's available, but it's a hospital kitchen. "Overdone" is the only way it's served.
Blood system, still not working. Deja ju, all over again.
Isolation. I'm not allowed out of this room except for procedures. Unless I'm being X-rayed, I'm a prisoner.
Rashes, infections, and afflictions abound, the result of living in the real world with no immune system.
So I walked in here and they got most of it under control this month. But sometime during my stay I inhaled a tiny little aspergillis spore and it settled in my lungs. Since it's settled into its new home, it's managed to carve out a nice little 41mm cavern out of my left lung.
And then the doctors all went into panic mode. Duh!
It was announced to me. "We're going to take your lung." It was suggested they'd try to get surgery to schedule me Tuesday (Today).
Well, after a lot of headbanging, a lot of brainwork, asking a lot of questions, it looks like surgery might happen next week sometime late IF it happens.
So, I get to wait in the hospital for another week, drugged until I quite literally "freak out". Given blood, treatments, platelets. Maybe surgery a few days later, then recovery time. Dunno what that means, really. I'm looking at another 30 days, but we'll work for the best. Will advise.
Sunday, May 31, 2009
Emperor Palpatine or the Virgin Mary?
Andre is still in the hospital. He is still in respiratory isolation which means he's not even allowed to roam the halls of the cancer ward. He's feeling better everyday, and he's even got his sense of humor back. Two nights ago, his head was feeling cold but since we didn't have a hat or a cap here in the hospital, he made do with the hospital blankie. I just can't help not taking this snapshot (forgive the double-negative).
Saturday, May 23, 2009
Crazy monkey
I absolutely love this thing. It's part of the birthday gift package for Andre from two of our lovely friends.
Ed
Ed
Friday, May 22, 2009
Happy Birthday!!!
Today, May 22nd, is Andre's birthday. He is still in the hospital but is getting better each day.
To ALL his readers: please write him a short note in the the comments section. I think it will cheer him up hearing from ALL of you.
Many thanks,
Ed
To ALL his readers: please write him a short note in the the comments section. I think it will cheer him up hearing from ALL of you.
Many thanks,
Ed
Tuesday, May 19, 2009
How are you?
In earth terms, it's been a long time since I gave any of you a real update on my physical condition, mental state, position in the universe.
I'm alive. I may (or may not) still have cancer, but cancer is always that way.
What recent tests have proved is that I definately have is Chronic Graft v Host Disease. The donor cells are trying to kill me and they're powerful little buggers. The Andre cells are trying to kill the cells that are saving me, and everything else in the world it trying to turn me into worm food.
Plot, counterplot, triple-cross means there's no rest for the weary, and I mean this in the most literal sense possible.
I'm exhausted and sliding backward. Ed is exhausted and frustrated watching me slide backward. This is SO HARD on him. He never deserved any of it. I think some of what Ed's been subjected to is probably the worst part of the entire cancer process.
All this past winter, I've motivated myself daily by thinking of trips, activities, bright sunshine, and Vancouver as our new home. Ed and I have had goals with positive outcomes and kettles full of smiles at both ends of our metaphorical rainbow. Now, as I'm about to turn 54, I'm too sick to deal with the rain that's needed for the spectacle.
In some ways, I think we're both technically depressed. We certainly have a problem with morale, but neither of us is giving up the fight.
So the diagnosis is: Chronic GVHD, exhaustion, possible depression. And all that comes with it.
I'm alive. I may (or may not) still have cancer, but cancer is always that way.
What recent tests have proved is that I definately have is Chronic Graft v Host Disease. The donor cells are trying to kill me and they're powerful little buggers. The Andre cells are trying to kill the cells that are saving me, and everything else in the world it trying to turn me into worm food.
Plot, counterplot, triple-cross means there's no rest for the weary, and I mean this in the most literal sense possible.
I'm exhausted and sliding backward. Ed is exhausted and frustrated watching me slide backward. This is SO HARD on him. He never deserved any of it. I think some of what Ed's been subjected to is probably the worst part of the entire cancer process.
All this past winter, I've motivated myself daily by thinking of trips, activities, bright sunshine, and Vancouver as our new home. Ed and I have had goals with positive outcomes and kettles full of smiles at both ends of our metaphorical rainbow. Now, as I'm about to turn 54, I'm too sick to deal with the rain that's needed for the spectacle.
In some ways, I think we're both technically depressed. We certainly have a problem with morale, but neither of us is giving up the fight.
So the diagnosis is: Chronic GVHD, exhaustion, possible depression. And all that comes with it.
Monday, May 11, 2009
Sunday in the hospital with Andre
We are back in the hospital. Repeat cycle. We're tired. If any of you want to visit, he's in 8NE of the UW Hospital. Call or email me first to make sure he's awake enough to have company. He sleeps all day.
Ed
Ed
Friday, May 08, 2009
It's alive!
Sorry to all of you who get RSS feeds. You're gonna get at least two of these.
I've lost my ever-lovin' mind. The drugs have been brutal. The changes have been horrible. The 4 people I've become have been unkind to Ed.
I slept in my own bed last night and spent about 6 hours back at the SCCA today being tested, probed and poked. They started photopheresis today and they've decided they wanna do it twice a week for the next 6 weeks. That works out to about 8 hours a week in addition to my regular duties there.
I'm currently at 61 doses per day (pills, cremes, proceses).
I weigh 141#. I haven't weighed 141# since before I entered HS.
Now I'm gonna take a nap.
I've lost my ever-lovin' mind. The drugs have been brutal. The changes have been horrible. The 4 people I've become have been unkind to Ed.
I slept in my own bed last night and spent about 6 hours back at the SCCA today being tested, probed and poked. They started photopheresis today and they've decided they wanna do it twice a week for the next 6 weeks. That works out to about 8 hours a week in addition to my regular duties there.
I'm currently at 61 doses per day (pills, cremes, proceses).
I weigh 141#. I haven't weighed 141# since before I entered HS.
Now I'm gonna take a nap.
Wednesday, May 06, 2009
Tenth night
Ed here, writing from Vancouver. I decided to stay in Canada because it's probably not safe for me to be on the road. I've been driving back-and-forth from Vancouver to Seattle. That's 140 mi each way. Since Andre's been hospitalized, I've put 1120 mi in my car. That's the equivalent driving distance from Seattle, WA to Los Angeles, CA (or from New York City to Kansas City).
It’s Andre’s 10th night in the hospital. He’s slowly getting better. This morning, the doctor said that he can leave the hospital on Friday at the earliest. They really want to see him start eating more which is more difficult than it sounds. The TPN he's hooked to have this effect of taking away one’s appetite. Additionally, his GI trouble is not fun and he thinks eating less will correspondingly decrease the pain he feels every time he goes to the loo.
Last night, Andre requested a soft taco from “the Bell”. It was the nurse who pointed out to us that it was an appropriate choice since it was Cinco de Mayo (I know…it’s not really Mexican food). Had I remembered, I would have snuck in some ‘ritas too.
It’s Andre’s 10th night in the hospital. He’s slowly getting better. This morning, the doctor said that he can leave the hospital on Friday at the earliest. They really want to see him start eating more which is more difficult than it sounds. The TPN he's hooked to have this effect of taking away one’s appetite. Additionally, his GI trouble is not fun and he thinks eating less will correspondingly decrease the pain he feels every time he goes to the loo.
Last night, Andre requested a soft taco from “the Bell”. It was the nurse who pointed out to us that it was an appropriate choice since it was Cinco de Mayo (I know…it’s not really Mexican food). Had I remembered, I would have snuck in some ‘ritas too.
Sunday, May 03, 2009
Still here.
It’s Ed again. Andre is asleep. He’s on his 7th night here in the UW hospital. Visitors are welcome to break the ennui of a confined life.
He was admitted to the hospital on Monday because of rashes/hives all over his body, conjunctivitis, and his lips that were cracked and bleeding so badly that he’s unable to eat or drink. The next day, the doctors did two more skin biopsies (for a total of 3 biopsies in 5 days). They also put him on 140 mg/day of prednisone which is twice the highest dose he’s ever been on. It did a lot of wonders for him as he was chipper by Tuesday afternoon, his lips had stopped bleeding and was able to start eating again, and the angry rashes were less irate. He even managed to be wonderful company to the two lovely ladies who visited him that night. When I left him on Wednesday night to go back to Vancouver to work and do my taxes, he was still fine but less chirpy. The steroid magic went away on Thursday. They did a 4th biopsy on Friday. This time, it was of his mouth. They also started feeding him nutrients through his central line (this process is called Total Parenteral Nutrition, or TPN for short) because he’s unable to eat enough to maintain his body weight. He sleeps most of the day. He’s unable to walk the halls of the hospital floor because of the inflamed skin around his groin area.
He’s been seen by oncologists, ophthalmologists, infectious disease specialists, a radiologist, and by a dermatologist. They’ve done biopsies, swabs, blood work, changed his medications (such as increasing the doses of the immunosuppressant prednisone and Tacrolimus, adding several eye meds, etc.), and a slew of other procedures. Today, they confirmed that he has chronic GVHD (graft-versus-host disease) based on the result of the mouth biopsy. He’s back down to 70 mg/day of prednisone. They’re considering adding back the other immunosuppressant--Myfortic--that he was weaned off two months ago. His rashes needs to calm down some more, and he should be able to eat on his own again before they can discharge him as an out-patient back to the care of the SCCA’s Long-Term Follow-Up Unit (LTFU). The LTFU will take the reins again because his regular SCCA oncologist does not want to deal with GVHD. This is a good thing because the LTFU is better equipped to handle them anyway.
I go back to Canada first thing tomorrow morning, but will drive back at the end of the work day. Thank God for public radio and for books-on-tape.
He was admitted to the hospital on Monday because of rashes/hives all over his body, conjunctivitis, and his lips that were cracked and bleeding so badly that he’s unable to eat or drink. The next day, the doctors did two more skin biopsies (for a total of 3 biopsies in 5 days). They also put him on 140 mg/day of prednisone which is twice the highest dose he’s ever been on. It did a lot of wonders for him as he was chipper by Tuesday afternoon, his lips had stopped bleeding and was able to start eating again, and the angry rashes were less irate. He even managed to be wonderful company to the two lovely ladies who visited him that night. When I left him on Wednesday night to go back to Vancouver to work and do my taxes, he was still fine but less chirpy. The steroid magic went away on Thursday. They did a 4th biopsy on Friday. This time, it was of his mouth. They also started feeding him nutrients through his central line (this process is called Total Parenteral Nutrition, or TPN for short) because he’s unable to eat enough to maintain his body weight. He sleeps most of the day. He’s unable to walk the halls of the hospital floor because of the inflamed skin around his groin area.
He’s been seen by oncologists, ophthalmologists, infectious disease specialists, a radiologist, and by a dermatologist. They’ve done biopsies, swabs, blood work, changed his medications (such as increasing the doses of the immunosuppressant prednisone and Tacrolimus, adding several eye meds, etc.), and a slew of other procedures. Today, they confirmed that he has chronic GVHD (graft-versus-host disease) based on the result of the mouth biopsy. He’s back down to 70 mg/day of prednisone. They’re considering adding back the other immunosuppressant--Myfortic--that he was weaned off two months ago. His rashes needs to calm down some more, and he should be able to eat on his own again before they can discharge him as an out-patient back to the care of the SCCA’s Long-Term Follow-Up Unit (LTFU). The LTFU will take the reins again because his regular SCCA oncologist does not want to deal with GVHD. This is a good thing because the LTFU is better equipped to handle them anyway.
I go back to Canada first thing tomorrow morning, but will drive back at the end of the work day. Thank God for public radio and for books-on-tape.
Tuesday, April 28, 2009
Andre's back at the UW Hospital
This is Ed. Andre was on hiatus from blogging because we were enjoying the lull in terms of his myeloma and transplant sequelae. But they reared their ugly heads again late last week.
Andre was told yesterday morning by his oncologist to check himself into the hospital. He's there now and I'm worried sick. I'm heading back down to Seattle tomorrow as soon as my morning meeting is finished.
All these came crashing down quickly. He was fine two weekends ago. He even went to his weekly appointment with his oncologist last Wednesday and was fine. Then suddenly, he woke up on Thursday morning with rashes/hives/bumps all over his body, especially on his fingers. His lips also started cracking and bleeding. It's so bad now that he can barely drink fluids, let alone eat. They put him back on high doses of immunosuppressants last Friday (the doc started tapering these a week-and-a-half ago) but these have not done anything. They suspect it's GVHD based on experience even though his skin biopsy from last Friday doesn't support this.
I just wanted to let you guys know in case you're wondering how he's been. I'll do my best to keep you posted.
Andre was told yesterday morning by his oncologist to check himself into the hospital. He's there now and I'm worried sick. I'm heading back down to Seattle tomorrow as soon as my morning meeting is finished.
All these came crashing down quickly. He was fine two weekends ago. He even went to his weekly appointment with his oncologist last Wednesday and was fine. Then suddenly, he woke up on Thursday morning with rashes/hives/bumps all over his body, especially on his fingers. His lips also started cracking and bleeding. It's so bad now that he can barely drink fluids, let alone eat. They put him back on high doses of immunosuppressants last Friday (the doc started tapering these a week-and-a-half ago) but these have not done anything. They suspect it's GVHD based on experience even though his skin biopsy from last Friday doesn't support this.
I just wanted to let you guys know in case you're wondering how he's been. I'll do my best to keep you posted.
Wednesday, April 15, 2009
La mia Divina Commedia
I got bad news from a friend a couple of weeks ago. Yesterday, the news got worse. For allegorical purposes, I'll call him Dante.
Dante has cancer.
His cancer is potentially excisable, meaning that a couple of hours on the table might solve his problem. On the other hand, nobody knows if his cancer has metastasised, so he might need chemo and radiation and all the levels of Hell I've written about over the last 2.75 years.
Naturally, I am Dante's Virgil. I will help guide him through Purgatory and Hell.
The strange thing is the degree to which it bothers me. A friend is going to endure some of the same tortures I've inadequately described. His family will suffer the same difficulties Ed and I are surviving. He will change, his marriage will change, his family dynamic will change. Ed and I will change.
I don't consider any of this a personal burden or a duty. Friends do this kind of thing for friends. It doesn't bother me to be Virgil. It simply bothers me because it seems so unfair. Dante doesn't deserve this. His family doesn't need the life lesson.
It sucks.
Dante has cancer.
His cancer is potentially excisable, meaning that a couple of hours on the table might solve his problem. On the other hand, nobody knows if his cancer has metastasised, so he might need chemo and radiation and all the levels of Hell I've written about over the last 2.75 years.
Naturally, I am Dante's Virgil. I will help guide him through Purgatory and Hell.
The strange thing is the degree to which it bothers me. A friend is going to endure some of the same tortures I've inadequately described. His family will suffer the same difficulties Ed and I are surviving. He will change, his marriage will change, his family dynamic will change. Ed and I will change.
I don't consider any of this a personal burden or a duty. Friends do this kind of thing for friends. It doesn't bother me to be Virgil. It simply bothers me because it seems so unfair. Dante doesn't deserve this. His family doesn't need the life lesson.
It sucks.
The cure.
It wasn't long ago that I talked about 'being cured of the cure' or somesuch wording. Let me tell you that today was a perfect example of the difficulty I'm having with that.
You know I've been anemic. You know I've been tapering my steroids. You know the hurdles.
Well, over the last 3 days, I've stumbled over every hurdle known to man.
Kidney function levels are ~3x what they should be. Red blood cell counts are horrible and I'm scheduled for a transfusion again tomorrow. Many of my meds are being adjusted to protect my kidneys. I'm back on a liter of hydration every day.
.....and my prednisone steroids are going back up to regular dosage levels......
In short, I'm still not making blood, my kidneys are suffering, and I feel like dog doo. Apparently I look good, which means I'll make a lovely corpse.
I should mention that I only weigh 153# with clothes and shoes on. I might set a new personal record.
...but I still don't have cancer, just GVHD. Where can I buy a T-shirt?
You know I've been anemic. You know I've been tapering my steroids. You know the hurdles.
Well, over the last 3 days, I've stumbled over every hurdle known to man.
Kidney function levels are ~3x what they should be. Red blood cell counts are horrible and I'm scheduled for a transfusion again tomorrow. Many of my meds are being adjusted to protect my kidneys. I'm back on a liter of hydration every day.
.....and my prednisone steroids are going back up to regular dosage levels......
In short, I'm still not making blood, my kidneys are suffering, and I feel like dog doo. Apparently I look good, which means I'll make a lovely corpse.
I should mention that I only weigh 153# with clothes and shoes on. I might set a new personal record.
...but I still don't have cancer, just GVHD. Where can I buy a T-shirt?
Tuesday, April 07, 2009
It's been forever.
It's been a long time since I updated this thing. I could blame it on the fact that life has been moving at a snail's pace here. Nothing drastic has happened. Nothing remarkable, nothing newsworthy.
But the truth is, I've been bored. Spring has taken too long to present itself. My health hasn't changed drastically, and nothing significant has happened.
Of course, this perspective only works if you look at life from one day to the next. The truth is that lots of little things add up to make today far different from last month.
Drugs: I'm no longer taking MMF/myfortec (an antirejection drug). I'm tapering my use of prednisone so I'm enduring a very long steroid taper (crash). I'm back on Mg and K in my hydration because I'm back on foscarnet for CMV.
All the changes and remaining drugs mean I have a rash, a sensitive GI, and relatively low energy, but the last 4 days have been sunny and warm, so I've been doing a few things outside, regardless of the way I feel.
My feeble little brain tells me to ride the motorcycle up to Canada on Thursday. The reasonable adult in me says the weather won't support it. We'll see.
I guess the safest thing to say here is that life is still OK and that we're moving forward. I have nothing negative to write and I have nothing super positive to write. Life moves on.
But the truth is, I've been bored. Spring has taken too long to present itself. My health hasn't changed drastically, and nothing significant has happened.
Of course, this perspective only works if you look at life from one day to the next. The truth is that lots of little things add up to make today far different from last month.
Drugs: I'm no longer taking MMF/myfortec (an antirejection drug). I'm tapering my use of prednisone so I'm enduring a very long steroid taper (crash). I'm back on Mg and K in my hydration because I'm back on foscarnet for CMV.
All the changes and remaining drugs mean I have a rash, a sensitive GI, and relatively low energy, but the last 4 days have been sunny and warm, so I've been doing a few things outside, regardless of the way I feel.
My feeble little brain tells me to ride the motorcycle up to Canada on Thursday. The reasonable adult in me says the weather won't support it. We'll see.
I guess the safest thing to say here is that life is still OK and that we're moving forward. I have nothing negative to write and I have nothing super positive to write. Life moves on.
Saturday, March 21, 2009
Time
It's time again. Time for another transfusion. It's planned for Monday afternoon at 4pm. Another two units of whole blood.
My steroid taper has begun. They're trying to wean me of the thing I love/hate the most. I relish the change. I fear the change.
On top of it all, I'm headed for Dallas next Tuesday. I'll be there for 6 nights and I have to maintain my chemical balance throughout. Hauling luggage will be so much fun. Drugs, hydration, Foscarnet, pumps, supplies, etc.
On the personal front, Ed and I spent some time in Vancouver. Today was beautiful and we took a little trip 'round town. Ed suggested we visit a motorcycle museum. I took lots of pics, Ed learned a few things and says he actually enjoyed it. The theme of the display? "End of Empire" - an exemplary display of British motorcycles with a bit of a comparison to some early Hondas.
Paradoxically, it was shown in the exhibits area of a Harley Davidson dealership.
My steroid taper has begun. They're trying to wean me of the thing I love/hate the most. I relish the change. I fear the change.
On top of it all, I'm headed for Dallas next Tuesday. I'll be there for 6 nights and I have to maintain my chemical balance throughout. Hauling luggage will be so much fun. Drugs, hydration, Foscarnet, pumps, supplies, etc.
On the personal front, Ed and I spent some time in Vancouver. Today was beautiful and we took a little trip 'round town. Ed suggested we visit a motorcycle museum. I took lots of pics, Ed learned a few things and says he actually enjoyed it. The theme of the display? "End of Empire" - an exemplary display of British motorcycles with a bit of a comparison to some early Hondas.
Paradoxically, it was shown in the exhibits area of a Harley Davidson dealership.
Friday, March 13, 2009
Good and bad
It's been a bit over 4 months since I rode the motorcycle anywhere. Between the weather, hospitalization, and a horrible lack of confidence, The Tigermobile has sat in the garage. Mind you, there's been a lot of attention payed to her, but she hasn't been out dancing in quite a while.
But today was 57F and sunny. I would have been ashamed if I'd stayed inside all day, so I suited up, donned my ears and tail, and overcame my apprehensions.
She's put on a few pounds since the last time we "tripped the light fantastic". She now carries The Tiger's complete office (laptop, cameras, first aid kit, locks, etc.) as well as having had an "augmentation" (additional headlights).
It still amazes me how light she is on her feet. It amazes me how natural I feel dancing with her. I lead, she follows instinctively. There is no negotiation, no arbitration. I say turn and she turns. I say stop and she stops. I say go and she asks how fast.
And that's the truly amazing part of it all. Metaphors aside, I haven't been on two wheels in a long time (for me). It's positively shocking how natural it is. It's like walking. Maybe even more natural than walking. It's like breathing. It's strange and I'm happy. This is good stuff
The title is "Good and bad.", so where's the bad?
The SCCA called me this afternoon. They requested another blood test and they asked me to get another "G" shot. I complied at about 4pm this afternoon.
What does that mean? "G" forces the marrow to produce blood across the spectrum (red, white, platelets, etc.). "G" has a fairly temporary effect on my blood counts. We get a bump up, I feel like somebody beat me with a garden hose, and then we get a drop in numbers. It's a temporary prop at best.
Now let's think about this: I was given 2 units of whole blood on Monday evening. The "G" prop-up is based on blood tests I had this morning, Friday. Yes kids, that's Monday night to Friday morning, or 3.5 days. Half a week.
Mind you, a "G" shot isn't a transfusion, and the "G" wasn't given to support my red blood cell count, but it's frustrating as hell to get these persistent reminders that my bone marrow isn't working.
Thank goodness Ed will be home in a few short hours.
But today was 57F and sunny. I would have been ashamed if I'd stayed inside all day, so I suited up, donned my ears and tail, and overcame my apprehensions.
She's put on a few pounds since the last time we "tripped the light fantastic". She now carries The Tiger's complete office (laptop, cameras, first aid kit, locks, etc.) as well as having had an "augmentation" (additional headlights).
It still amazes me how light she is on her feet. It amazes me how natural I feel dancing with her. I lead, she follows instinctively. There is no negotiation, no arbitration. I say turn and she turns. I say stop and she stops. I say go and she asks how fast.
And that's the truly amazing part of it all. Metaphors aside, I haven't been on two wheels in a long time (for me). It's positively shocking how natural it is. It's like walking. Maybe even more natural than walking. It's like breathing. It's strange and I'm happy. This is good stuff
The title is "Good and bad.", so where's the bad?
The SCCA called me this afternoon. They requested another blood test and they asked me to get another "G" shot. I complied at about 4pm this afternoon.
What does that mean? "G" forces the marrow to produce blood across the spectrum (red, white, platelets, etc.). "G" has a fairly temporary effect on my blood counts. We get a bump up, I feel like somebody beat me with a garden hose, and then we get a drop in numbers. It's a temporary prop at best.
Now let's think about this: I was given 2 units of whole blood on Monday evening. The "G" prop-up is based on blood tests I had this morning, Friday. Yes kids, that's Monday night to Friday morning, or 3.5 days. Half a week.
Mind you, a "G" shot isn't a transfusion, and the "G" wasn't given to support my red blood cell count, but it's frustrating as hell to get these persistent reminders that my bone marrow isn't working.
Thank goodness Ed will be home in a few short hours.
Sunday, March 08, 2009
Weekly weakness.
I got a phone call today from the SCCA. Another blood transfusion is scheduled for tomorrow, Monday. It's only been seven days. This is NOT good. Not good at all.
They put me on a foscarnet infusion last Friday for a recurrence of the CMV infection that's come and gone several times in the last 6 months.
I wasn't kidding when I said I needed to survive the cure. Sorry, this isn't cleverly written. I'm frustrated.
They put me on a foscarnet infusion last Friday for a recurrence of the CMV infection that's come and gone several times in the last 6 months.
I wasn't kidding when I said I needed to survive the cure. Sorry, this isn't cleverly written. I'm frustrated.
Monday, March 02, 2009
I am .......
Since the recent diagnosis, I've been struck by the need to re-identify myself.
Don't misunderstand, I know who I am. People who know me, know me. However, my public persona has suddenly lost a distinct identity.
Let me be clear. Since the inception of this blog, I've always had an "incurable cancer". That expression imparts a level, a degree, a scale of "cancerness". It lends a title and rank to the seriousness of the problem. It says, "I probably will not survive this." It says lots of things. One of which is always interpreted as "terminal".
And now I've lost my title. I've been forced to abdicate. I've been removed from office. I've been Blagojevich'ed, Edward VIII'ed, Bishop Richard Williamson'ed. (Well, not quite, but you get the idea.)
Oddly, I feel a bit like a father who's taken his children to Disneyland. I spent a lot money and didn't enjoy it at all. Now, instead of being Superdad who's taking the kids on vacation, I'm just the old man who screamed "If I have to stop this car, some body's gonna get hurt."
Perception is changed by reality and the reality is that I will be perceived differently. Certainly I perceive myself differently.
"Cancer Survivor" is the title all of us have been striving for, but now it sounds so trite, like "CEO" or "MBA" or "high school dropout". Descriptive titles are everywhere. None of them mean anything without a definition and a history.
So how should I identify myself now...... What's my title? (Do I need a title? Do I need to identify myself?)
You see, the truth is that we need to re-enter the real world. We need to return to the land of the living. We need the simple aspirations and objectives of a normal couple who ask one another where to go on vacation, what's on the agenda for the weekend, and what's for dinner. We need to stop existing from appointment to appointment.
Because the amazing thing is: We got our wish. I'm going to live, and I'm going to have a decent quality of life.
We found Aladdin's lamp on the beach. We rubbed it and now the genie stands before us. Now what the heck are we supposed to do?
"Genie, make me the Chief Executive Carnivore at 2WheelTiger.com."
-kapow-
And so it is.
Hey, at least I wasn't singing "I wish I was an Oscar Meyer wiener!" when the genie appeared.
Don't misunderstand, I know who I am. People who know me, know me. However, my public persona has suddenly lost a distinct identity.
Let me be clear. Since the inception of this blog, I've always had an "incurable cancer". That expression imparts a level, a degree, a scale of "cancerness". It lends a title and rank to the seriousness of the problem. It says, "I probably will not survive this." It says lots of things. One of which is always interpreted as "terminal".
And now I've lost my title. I've been forced to abdicate. I've been removed from office. I've been Blagojevich'ed, Edward VIII'ed, Bishop Richard Williamson'ed. (Well, not quite, but you get the idea.)
Oddly, I feel a bit like a father who's taken his children to Disneyland. I spent a lot money and didn't enjoy it at all. Now, instead of being Superdad who's taking the kids on vacation, I'm just the old man who screamed "If I have to stop this car, some body's gonna get hurt."
Perception is changed by reality and the reality is that I will be perceived differently. Certainly I perceive myself differently.
"Cancer Survivor" is the title all of us have been striving for, but now it sounds so trite, like "CEO" or "MBA" or "high school dropout". Descriptive titles are everywhere. None of them mean anything without a definition and a history.
So how should I identify myself now...... What's my title? (Do I need a title? Do I need to identify myself?)
You see, the truth is that we need to re-enter the real world. We need to return to the land of the living. We need the simple aspirations and objectives of a normal couple who ask one another where to go on vacation, what's on the agenda for the weekend, and what's for dinner. We need to stop existing from appointment to appointment.
Because the amazing thing is: We got our wish. I'm going to live, and I'm going to have a decent quality of life.
We found Aladdin's lamp on the beach. We rubbed it and now the genie stands before us. Now what the heck are we supposed to do?
"Genie, make me the Chief Executive Carnivore at 2WheelTiger.com."
-kapow-
And so it is.
Hey, at least I wasn't singing "I wish I was an Oscar Meyer wiener!" when the genie appeared.
Friday, February 27, 2009
Every two weeks....
Every two weeks, just like clockwork, the SCCA calls me to get a blood transfusion. They always call on Friday afternoon. They always schedule it like it was some kind of emergency over the weekend.
So they called at about 3pm today, and big DUH!. They wanted me to do a STAT transfusion of 2 units of whole blood. Their proposal - T&C on Friday afternoon with most of Saturday being transfused.
But Ed's coming home tonight and my brother and his hubby are flying in tomorrow for lunch. (Yeah, they're wacky that way.)
We've got stuff to do, so I told the SCCA to go away. We can do this Monday. Heck, if it's gonna be every 2 weeks like clockwork, we might as well screw up my Monday instead of my weekends with Ed. Let's allow the calendar to slide a bit.
They agreed to do a T&C on Sunday at my usual draw. The transfusion will be scheduled for Monday afternoon. Thankfully Ed will be here through Monday morning in case I slide down a slippery slope, but it shouldn't be a problem.
Personal opinion: They'll call me next week for platelets. I'm bruising like a 104 year old woman again.
You know what's odd? If I don't make any trips to Vancouver, I can actually drive my truck for a longer time than I can drive myself. 2 weeks on blood, 3 weeks on a full tank of fuel. The tank of fuel is only $40ish. The blood is like..... blood!
It seems I'm less efficient than an F150 with a V8 engine, but you can't start calling me Mr. Greenhouse Gas!
So they called at about 3pm today, and big DUH!. They wanted me to do a STAT transfusion of 2 units of whole blood. Their proposal - T&C on Friday afternoon with most of Saturday being transfused.
But Ed's coming home tonight and my brother and his hubby are flying in tomorrow for lunch. (Yeah, they're wacky that way.)
We've got stuff to do, so I told the SCCA to go away. We can do this Monday. Heck, if it's gonna be every 2 weeks like clockwork, we might as well screw up my Monday instead of my weekends with Ed. Let's allow the calendar to slide a bit.
They agreed to do a T&C on Sunday at my usual draw. The transfusion will be scheduled for Monday afternoon. Thankfully Ed will be here through Monday morning in case I slide down a slippery slope, but it shouldn't be a problem.
Personal opinion: They'll call me next week for platelets. I'm bruising like a 104 year old woman again.
You know what's odd? If I don't make any trips to Vancouver, I can actually drive my truck for a longer time than I can drive myself. 2 weeks on blood, 3 weeks on a full tank of fuel. The tank of fuel is only $40ish. The blood is like..... blood!
It seems I'm less efficient than an F150 with a V8 engine, but you can't start calling me Mr. Greenhouse Gas!
Tuesday, February 24, 2009
The line in the sand.
I had appointments at the SCCA today. It was a regular visit, but I was also to receive the results of my doctor's "line in the sand" testing. In the last week, he's challenged every possible myeloma test so we can move forward.
Tomorrow is Day 180. Yes, six months since the last transplant. Six months of treading water. Six months of curiosity. Six months of 'maybe'.
And now we have the answer in fairly definite terms. As previously reported, 100% of the bone marrow in me is somebody else's ---> mine now. As of this last test, Sangre d'Andre is dead and gone. Except for a special little bag in a liquid nitrogen bath, there is no more Andre blood on the planet. Even that will be gone soon.
But the bigger result is: There are no symptoms of MM. There are no residual indicators of MM. There are no markers that suggest it may be lingering. Every single test shows there is no cancer at all. Everything from ultra sensitive scientific testing to "lab researcher seat of the pants" tests show the MM is gone. Bye-bye! Good riddance. Don't let the door hit you in the ass on the way out. Gone.
So, I survived cancer. Now I just have to survive the cure. I have no immune system. I'm still not making new blood. Recent changes to my drug routine seem to be changing the picture though. Hopefully we'll turn the corner soon.
I feel better this month than I did last month, or the month before. Things are improving. They're working on it. Ed and I are working on it. We'll get through this even if it kills me.
Tomorrow is Day 180. Yes, six months since the last transplant. Six months of treading water. Six months of curiosity. Six months of 'maybe'.
And now we have the answer in fairly definite terms. As previously reported, 100% of the bone marrow in me is somebody else's ---> mine now. As of this last test, Sangre d'Andre is dead and gone. Except for a special little bag in a liquid nitrogen bath, there is no more Andre blood on the planet. Even that will be gone soon.
But the bigger result is: There are no symptoms of MM. There are no residual indicators of MM. There are no markers that suggest it may be lingering. Every single test shows there is no cancer at all. Everything from ultra sensitive scientific testing to "lab researcher seat of the pants" tests show the MM is gone. Bye-bye! Good riddance. Don't let the door hit you in the ass on the way out. Gone.
So, I survived cancer. Now I just have to survive the cure. I have no immune system. I'm still not making new blood. Recent changes to my drug routine seem to be changing the picture though. Hopefully we'll turn the corner soon.
I feel better this month than I did last month, or the month before. Things are improving. They're working on it. Ed and I are working on it. We'll get through this even if it kills me.
Thursday, February 19, 2009
Lyrics
I've been listening to this song on Sirius Hits for a while and finally decided to post the lyrics. Obviously the song moves me, but it surprises me that a the subject has made it to the Top 40 stations. It's not about sex, love, or getting high.
THRIVING IVORY
Angels On The Moon
Do you dream, that the world will know your name?
So tell me your name
And do you care, about all the little things or anything at all?
I wanna feel, all the chemicals inside I wanna feel
I wanna sunburn, just to know that I'm alive
To know I'm alive
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Do you believe, in the day that you were born?
Tell me, do you believe?
And do you know, that every day's
The first of the rest of your life?
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
This is to one last day in the shadows
And to know a brother's love
This is to New York City angels
And the rivers of our blood
This is to all of us, to all of us
So don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Yeah, you can tell me all your thoughts
About the stars that fill polluted skies
And show me where you run to
When no one's left to take your side
But don't tell me where the road ends
'Cause I just don't wanna know,
No I don't wanna know
Don't tell me if I'm dying
Don't tell me if I'm dying
Don't tell me if I'm dying
THRIVING IVORY
Angels On The Moon
Do you dream, that the world will know your name?
So tell me your name
And do you care, about all the little things or anything at all?
I wanna feel, all the chemicals inside I wanna feel
I wanna sunburn, just to know that I'm alive
To know I'm alive
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Do you believe, in the day that you were born?
Tell me, do you believe?
And do you know, that every day's
The first of the rest of your life?
Don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me 'cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
This is to one last day in the shadows
And to know a brother's love
This is to New York City angels
And the rivers of our blood
This is to all of us, to all of us
So don't tell me if I'm dying, 'cause I don't wanna know
If I can't see the sun, maybe I should go
Don't wake me cause I'm dreaming, of angels on the moon
Where everyone you know, never leaves too soon
Yeah, you can tell me all your thoughts
About the stars that fill polluted skies
And show me where you run to
When no one's left to take your side
But don't tell me where the road ends
'Cause I just don't wanna know,
No I don't wanna know
Don't tell me if I'm dying
Don't tell me if I'm dying
Don't tell me if I'm dying
Monday, February 16, 2009
Transplant oddity
I've discussed this before, but I'll reiterate: In a limited way, bone marrow transplant patients acquire traits of their donors. The patient's old allergies may go away. The patient may gain the donor's allergies. Blood types may change. Gender may change at the chromosome level (but not otherwise).
My donor graft was a very close match of alleles. This means he and I follow a very similar line of hereditary variation. You could consider us Doppelgangers or twins at some biological level.
But there are differences because we're not clones. (Arguably, even clones vary.)
Last night, Ed and I believe we confirmed my first "derivative distinction" from the transplant. It's nothing worrysome. It's nothing that will be difficult to live with. In fact, it's a particularly funny one, considering.
We believe that my donor does not produce Aldehyde Dehydrogenase (ALDH2). Here's a section from Wikipedia on the topic.
That's right folks, I can't drink alcohol any more. I've tried enough times since the transplant to be VERY certain this is a fact. A simple glass with dinner turns me into a beet with a mild itch.
So, what's the coincidence of the day? Ed has the same problem. He always has.
And that's OK.
My donor graft was a very close match of alleles. This means he and I follow a very similar line of hereditary variation. You could consider us Doppelgangers or twins at some biological level.
But there are differences because we're not clones. (Arguably, even clones vary.)
Last night, Ed and I believe we confirmed my first "derivative distinction" from the transplant. It's nothing worrysome. It's nothing that will be difficult to live with. In fact, it's a particularly funny one, considering.
We believe that my donor does not produce Aldehyde Dehydrogenase (ALDH2). Here's a section from Wikipedia on the topic.
ALDH2 plays a crucial role in maintaining low blood levels of acetaldehyde during alcohol oxidation. In this pathway, the intermediate structures can be toxic, and health problems arise when those intermediates cannot be cleared (Crabb 2004). When high levels of acetaldehyde occur in the blood, symptoms of facial flushing, light headedness, palpitations, nausea, and general “hangover” symptoms occur . These symptoms are indicative of a disease known as “Asian Flush” or “Oriental Flushing Syndrome” (Thomasson 1991).
That's right folks, I can't drink alcohol any more. I've tried enough times since the transplant to be VERY certain this is a fact. A simple glass with dinner turns me into a beet with a mild itch.
So, what's the coincidence of the day? Ed has the same problem. He always has.
And that's OK.
Friday, February 13, 2009
Post - 13th
They did it all today.
I got a full series of blood tests, one unit of platelets, two units of whole blood, a complete drug evaluation/inventory by the pharmacy, and a dietary recommendation (my phosphorus is low).
The pharmacy thing was rather odd. They asked me to bring in ALL of my drugs. Not the drug list...... the actual drugs. So I carried an Igloo cooler around all day. I passed.
I don't think they'd do all this unless somebody was marking a line in the sand. I think Dr. B. put his foot down. This might be a good thing.
I got a full series of blood tests, one unit of platelets, two units of whole blood, a complete drug evaluation/inventory by the pharmacy, and a dietary recommendation (my phosphorus is low).
The pharmacy thing was rather odd. They asked me to bring in ALL of my drugs. Not the drug list...... the actual drugs. So I carried an Igloo cooler around all day. I passed.
I don't think they'd do all this unless somebody was marking a line in the sand. I think Dr. B. put his foot down. This might be a good thing.
Thursday, February 12, 2009
Friday the 13th
Today is the 12th, so this is the plan for tomorrow, Friday, Feb 13, 2009. No, I'm not superstitious.
I'll do a blood test at 10:30, then I'll get platelets at 11:00. While I'm getting platelets, they'll test and T&C my blood to see if I need a whole blood transfusion.
Yeah. Let's think about that. Platelets to keep me from bleeding everywhere all the time. Whole blood so I don't turn into a Zombie. It hasn't been very long since the last transfusion(s). This really feels like putting fuel in my truck. Read the guage, pull in, swipe the card, insert the nozzle, wait for the pumps to stop, get the receipt, drive away until the gauge reads low again. Rinse, repeat.
The platelets are on the plan. The whole blood is a 'maybe'.
Regardless, recognize that if this is part of their plan, if they see repetitive negative responses in my blood counts, if they're entertaining contingency plans of this sort, THINGS AREN'T GOING WELL.
Did I mention that I got a 'hit and run' with my regular oncologist, Dr. B., in the hallway? (A 'hit and run' is when you stumble across your doc in a common area and he makes an effort to talk to you.) I said, "Hello" and he said, "Hey! Got a minute?"
He recited my symptoms from memory. He recited my responses from memory. Then he told me about his discussions with Dr. D(ifficult). He also spoke about his recent discussions with the new doc on rounds (Dr M.). He made himself clear to the new doc, and to me, that we've got to look at another side of this blood problem, and we've got to do it NOW.
So, on Tuesday, Feb 17, I get another bone marrow biopsy. Yup, more Black & Decker in my hips. New holes, new scars, new fun.
I'm not looking forward to the procedure, but I'll welcome the results. We need to find out what's going on. From what I gather, there's a chance that the graft didn't proliferate (for lack of a better term). In other words, 100% of what's there is donor cells, but there might not be very much there.
To simplify, 4 cells could equal 100% of what's available, but if I need 4000 cells to be there, then I still have a big problem. Yes, that's a tremendous oversimplification and the numbers I've used are complete speculations, but there are a lot of things Dr. B. wants to find out from this process.
I wanna know too. Spring is coming. I wanna make some blood.
I'll do a blood test at 10:30, then I'll get platelets at 11:00. While I'm getting platelets, they'll test and T&C my blood to see if I need a whole blood transfusion.
Yeah. Let's think about that. Platelets to keep me from bleeding everywhere all the time. Whole blood so I don't turn into a Zombie. It hasn't been very long since the last transfusion(s). This really feels like putting fuel in my truck. Read the guage, pull in, swipe the card, insert the nozzle, wait for the pumps to stop, get the receipt, drive away until the gauge reads low again. Rinse, repeat.
The platelets are on the plan. The whole blood is a 'maybe'.
Regardless, recognize that if this is part of their plan, if they see repetitive negative responses in my blood counts, if they're entertaining contingency plans of this sort, THINGS AREN'T GOING WELL.
Did I mention that I got a 'hit and run' with my regular oncologist, Dr. B., in the hallway? (A 'hit and run' is when you stumble across your doc in a common area and he makes an effort to talk to you.) I said, "Hello" and he said, "Hey! Got a minute?"
He recited my symptoms from memory. He recited my responses from memory. Then he told me about his discussions with Dr. D(ifficult). He also spoke about his recent discussions with the new doc on rounds (Dr M.). He made himself clear to the new doc, and to me, that we've got to look at another side of this blood problem, and we've got to do it NOW.
So, on Tuesday, Feb 17, I get another bone marrow biopsy. Yup, more Black & Decker in my hips. New holes, new scars, new fun.
I'm not looking forward to the procedure, but I'll welcome the results. We need to find out what's going on. From what I gather, there's a chance that the graft didn't proliferate (for lack of a better term). In other words, 100% of what's there is donor cells, but there might not be very much there.
To simplify, 4 cells could equal 100% of what's available, but if I need 4000 cells to be there, then I still have a big problem. Yes, that's a tremendous oversimplification and the numbers I've used are complete speculations, but there are a lot of things Dr. B. wants to find out from this process.
I wanna know too. Spring is coming. I wanna make some blood.
Monday, February 09, 2009
Diet
The last week has been an odd thing. The trend is toward feeling better, however, a spontaneous sampling on any given hour might show that I'm WAY in the dumps. It may also show that I'm amped and feeling like a marathoner. The data points don't make a very smooth curve. If I blogged hour to hour, you'd think I was bipolar.
What I have to do is recognize the source of the distress/recovery. Unfortunately it's my gut (where the majority of my GVHD is). It's my fault. I've got to stop pushing the performance envelope with tasty/spicy foods and large vegetable content. Unfortunately I'm not exercising enough willpower to control my both Ed's and my personal desires. We both like tasty food.
If I stick to oat meal, Cream of Wheat, instant mashies, rice, and plain meats with soy sauce or plain salt, I'm cool. In fact, I don't even know my lower GI exists.... but if I go for fried meats and simple black pepper, leafy green veggies, or (heaven forbid) coffee, I'll spend part of my future regretting my past. I've been to purgatory and it has porcelain fixtures.
Some of you know my palate, and this is NOT fun. I need to stick with a diet even the Norse would think was dull. Picture Odin offering me a bowl of boiled whitefish and a potato with a little bit of sea salt.
My response? "Please sir, may I have some more?"
(Yes, the little movies in your mind just went flicker-flicker-flicker. Huh?)
What I have to do is recognize the source of the distress/recovery. Unfortunately it's my gut (where the majority of my GVHD is). It's my fault. I've got to stop pushing the performance envelope with tasty/spicy foods and large vegetable content. Unfortunately I'm not exercising enough willpower to control my both Ed's and my personal desires. We both like tasty food.
If I stick to oat meal, Cream of Wheat, instant mashies, rice, and plain meats with soy sauce or plain salt, I'm cool. In fact, I don't even know my lower GI exists.... but if I go for fried meats and simple black pepper, leafy green veggies, or (heaven forbid) coffee, I'll spend part of my future regretting my past. I've been to purgatory and it has porcelain fixtures.
Some of you know my palate, and this is NOT fun. I need to stick with a diet even the Norse would think was dull. Picture Odin offering me a bowl of boiled whitefish and a potato with a little bit of sea salt.
My response? "Please sir, may I have some more?"
(Yes, the little movies in your mind just went flicker-flicker-flicker. Huh?)
Thursday, February 05, 2009
Back in Seattle.
I'm in Seattle this afternoon as I have an appointment at the SCCA tomorrow. My little journey was pleasant, but I really don't care for packing, unpacking, packing, and unpacking. Ed and I are figuring the details of this out. Two sets of clothes and two of everything else should resolve any issues with having two lives.
My CMV seems to be resolved. They took me off Foscarnet yesterday and we will probably change my hydration slightly tomorrow. I'm hoping we can go down to 500cc total from my current 750. Prednisone levels are still ~50mg/day. GI activity is normal. Early satiety continues.
On the bright side, I finally stumbled on the recipe for a "Bacon Explosion". Click the link if you don't eat vegan, vegetarian, Kosher, or Halal.
My buddy Art did one of these recently. He spoke of 'overdose' afterward. Must be good.
My CMV seems to be resolved. They took me off Foscarnet yesterday and we will probably change my hydration slightly tomorrow. I'm hoping we can go down to 500cc total from my current 750. Prednisone levels are still ~50mg/day. GI activity is normal. Early satiety continues.
On the bright side, I finally stumbled on the recipe for a "Bacon Explosion". Click the link if you don't eat vegan, vegetarian, Kosher, or Halal.
My buddy Art did one of these recently. He spoke of 'overdose' afterward. Must be good.
Monday, February 02, 2009
Energy bar.
I had lots of energy today. I met with a real estate agent about the house, got the truck tested and registered, snooped around the hardware store, visited with the neighbor, reworked the graphics on the truck, lots of stuff.......
GETTING blood is problematic. HAVING blood is really cool. It's amazing what the red sauce can do for a person.
Tomorrow is a long day that will hopefully culminate in a Vancouver arrival. I think Ed's eager to see me since he packed my bag last night.
The truck is loaded. I have a few more things to collect and I'll be ready to roll.
GETTING blood is problematic. HAVING blood is really cool. It's amazing what the red sauce can do for a person.
Tomorrow is a long day that will hopefully culminate in a Vancouver arrival. I think Ed's eager to see me since he packed my bag last night.
The truck is loaded. I have a few more things to collect and I'll be ready to roll.
Sunday, February 01, 2009
Venting
Ed got home about 9pm on Friday night. Life was good.
Saturday turned into a giant series of SCCA errors again. I really don't know what to do about it besides document it for posterity. Skip the rest of this post if you don't want to hear me belly-ache.
-----------
At about 9am on Saturday, Ed an I appeared at the SCCA for a blood draw and a T&C. Then we went to breakfast.
At 10:30, we got a call requesting my appearance at noon for 2 units of blood. We finished breakfast, picked up some things at home, and appeared at the OK Corral (where the wireless internet was down hard).
AN HOUR later,they called me to a room. Yeah, we sat in the isolation area with masks on for 60 minutes. The room they put us in is not an "isolation room". I've been on their official "respiratory isolation" list for more than 4 continuous months. The fact that I walk around the facility with a pink facemask on doesn't seem to register with them. It's their facemask, their rule, their policy. I comply with their rules as soon as I enter the facility.
I brought my condition to their attention AGAIN. After some consternation as to whether they had an isolation room available, they stuck us in another room. The room had not been fully serviced, so I have my doubts about its qualifications as an iso.
Let me explain: They want me in an iso room so I don't infect others. Then they stick me in a room with exposed infectious agents. Two strikes on Saturday. Who's infecting who?
At about 1:30 they announced that my blood hadn't been delivered yet. Then they took my blood pressure.
The drugs must work quite well. It was only 127/81.
The transfusion started at about 1:45. 2 units of blood take 4 hours to infuse. The SCCA closes at 5p on Saturdays. Do the math. Solution? Turn up the pump!
At 5:08pm, Ed and I were in the car. The parking garage was closed. Yeah, the gates were down. The attendant made some things happen for us. He was a very helpful and cooperative guy. He must be quite familiar with patient frustration.
Anyway, I have energy because I have blood again. I feel like doggie doo because of the process.
We went to Chang's Gourmet for dinner. I ate too many leafy green veggies. I loved them yesterday. I hate them today.
Scales of Justice, and all that.
Time to move on. Monday morning is another day.
Oddity du jour: I just checked the spelling on this message. Blogger's spell checker says the word "internet" is incorrectly spelled. A second check shows that "Blogger's" is also incorrect. Huh?
Saturday turned into a giant series of SCCA errors again. I really don't know what to do about it besides document it for posterity. Skip the rest of this post if you don't want to hear me belly-ache.
-----------
At about 9am on Saturday, Ed an I appeared at the SCCA for a blood draw and a T&C. Then we went to breakfast.
At 10:30, we got a call requesting my appearance at noon for 2 units of blood. We finished breakfast, picked up some things at home, and appeared at the OK Corral (where the wireless internet was down hard).
AN HOUR later,they called me to a room. Yeah, we sat in the isolation area with masks on for 60 minutes. The room they put us in is not an "isolation room". I've been on their official "respiratory isolation" list for more than 4 continuous months. The fact that I walk around the facility with a pink facemask on doesn't seem to register with them. It's their facemask, their rule, their policy. I comply with their rules as soon as I enter the facility.
I brought my condition to their attention AGAIN. After some consternation as to whether they had an isolation room available, they stuck us in another room. The room had not been fully serviced, so I have my doubts about its qualifications as an iso.
Let me explain: They want me in an iso room so I don't infect others. Then they stick me in a room with exposed infectious agents. Two strikes on Saturday. Who's infecting who?
At about 1:30 they announced that my blood hadn't been delivered yet. Then they took my blood pressure.
The drugs must work quite well. It was only 127/81.
The transfusion started at about 1:45. 2 units of blood take 4 hours to infuse. The SCCA closes at 5p on Saturdays. Do the math. Solution? Turn up the pump!
At 5:08pm, Ed and I were in the car. The parking garage was closed. Yeah, the gates were down. The attendant made some things happen for us. He was a very helpful and cooperative guy. He must be quite familiar with patient frustration.
Anyway, I have energy because I have blood again. I feel like doggie doo because of the process.
We went to Chang's Gourmet for dinner. I ate too many leafy green veggies. I loved them yesterday. I hate them today.
Scales of Justice, and all that.
Time to move on. Monday morning is another day.
Oddity du jour: I just checked the spelling on this message. Blogger's spell checker says the word "internet" is incorrectly spelled. A second check shows that "Blogger's" is also incorrect. Huh?
Friday, January 30, 2009
Can they make it more difficult?
I had a blood test at 9:30 this morning. At 4pm I got a call.
"We need to give you two units of whole blood tomorrow after a type and cross. How about if we see you at about 8:30 in the morning?" Yup, Saturday at 8:30.
No, it wasn't quite that simple, and it wasn't that trite, but the net result was the same.
I get two days a week with Ed and they're taking one. Blood test, T&C, wait for the delivery, transfuse over 4 hours. If I can jam it into one day tomorrow, maybe they won't eat into our Sunday.
Feel free to add a closing line of your own. I'm going to put my fingers away for a few hours.
"We need to give you two units of whole blood tomorrow after a type and cross. How about if we see you at about 8:30 in the morning?" Yup, Saturday at 8:30.
No, it wasn't quite that simple, and it wasn't that trite, but the net result was the same.
I get two days a week with Ed and they're taking one. Blood test, T&C, wait for the delivery, transfuse over 4 hours. If I can jam it into one day tomorrow, maybe they won't eat into our Sunday.
Feel free to add a closing line of your own. I'm going to put my fingers away for a few hours.
Wednesday, January 28, 2009
I agree.
tim's wife wrote:
Here's the thing about statistics. I know 2 men whose wives and families were told they had a 0% chance of survival. I don't know how a doctor can say that unless the patient is already gone or the doctor's first name is "almighty" and he's got a hippy looking guy standing next to him in a loin cloth with holes in his hands and feet. Anyway, they are both fine today.
The morals of this story.... statistics are a waste, doctors shouldn't play God, and don't get pancreatitis(what they both had.)
I ultimately agree with you on the statistical issues. I use them mostly as a means of measuring risk, not results. I think lots of people take mathematics as an absolute, not as the vague indicator it most often represents. Pure numbers show simple values. Percentages only suggest potential trends for a specific outcome. Mathematics is the study of history.
There is no future in numbers. Feel free to quote me.
However, speaking both mathematically and historically, LIFE has had a 100% death rate over a lifetime. The trick is for individuals to avoid hitting the jackpot in a foreseeable time period. Thus, our attention to risk and statistics.
When I actively raced motorcycles, my mortality risk was below 1% for that activity. Now my mortality risk is above 30% from uncontrolled outside infections.
Suddenly, an 8 year old is MANY times more dangerous to me than Pacific Raceways' turn one at 157 miles an hour. And yes, I've done that on two wheels, but I won't hug my nephews next weekend. The statistical risk is simply too high.
Life's strange that way. Statistics prove it.
Here's the thing about statistics. I know 2 men whose wives and families were told they had a 0% chance of survival. I don't know how a doctor can say that unless the patient is already gone or the doctor's first name is "almighty" and he's got a hippy looking guy standing next to him in a loin cloth with holes in his hands and feet. Anyway, they are both fine today.
The morals of this story.... statistics are a waste, doctors shouldn't play God, and don't get pancreatitis(what they both had.)
I ultimately agree with you on the statistical issues. I use them mostly as a means of measuring risk, not results. I think lots of people take mathematics as an absolute, not as the vague indicator it most often represents. Pure numbers show simple values. Percentages only suggest potential trends for a specific outcome. Mathematics is the study of history.
There is no future in numbers. Feel free to quote me.
However, speaking both mathematically and historically, LIFE has had a 100% death rate over a lifetime. The trick is for individuals to avoid hitting the jackpot in a foreseeable time period. Thus, our attention to risk and statistics.
When I actively raced motorcycles, my mortality risk was below 1% for that activity. Now my mortality risk is above 30% from uncontrolled outside infections.
Suddenly, an 8 year old is MANY times more dangerous to me than Pacific Raceways' turn one at 157 miles an hour. And yes, I've done that on two wheels, but I won't hug my nephews next weekend. The statistical risk is simply too high.
Life's strange that way. Statistics prove it.
Tuesday, January 27, 2009
Candor
Based on my earlier post, I feel I made some good progress with Dr. D. today.
Unfortunately I also got a realistic perspective of my reality.
My spontaneous bleeding is no big deal. It's drug induced.
My drug levels are being monitored, at least in part, by observation of muscular tremors.
Blood numbers aren't going up, but they stopped going down so rapidly.
I'm still tremendously immunocompromised.
The statistical mortality rate for people in my situation is still rather high.
Meanwhile, I'm looking in the mirror and trying to see Steve Austin.
There you have it.
Unfortunately I also got a realistic perspective of my reality.
My spontaneous bleeding is no big deal. It's drug induced.
My drug levels are being monitored, at least in part, by observation of muscular tremors.
Blood numbers aren't going up, but they stopped going down so rapidly.
I'm still tremendously immunocompromised.
The statistical mortality rate for people in my situation is still rather high.
Meanwhile, I'm looking in the mirror and trying to see Steve Austin.
There you have it.
The optimist.
Remember Doctor D, the doctor I had the horrible fight with? She and I had a very interesting conversation today.
Essentially, we've both accepted that we're different. We seem to have accepted the huge problem with our communications. We didn't address it directly, but I'm suspecting our true issue is a simple matter of methods.
She's BLUNT. She's factual. I'm BLUNT. I try to be factual. The disconnect seems to be that her world is black and white. Mine is 24 bit greyscale. We're both equally irritating but we don't see life the same way at all.
She doesn't joke. I joke all the time. She wouldn't reveal half of what's written in this blog. I would never write the the research paper she would put in its place.
Neither of us is wrong. (Well, maybe both of us are, who knows.)
I'll give you an example of a small part of the exchange today. It happened as we were walking out of the exam room.
She said, "You look good."
I responded laughingly and with obviously feigned vanity, "I always look good."
She responded, "Well, I mean you look better than you did last time I saw you."
Yeah, re-read that. I don't think she was trying to be insulting. I think she was just considering her words against her perceived professional standards.
She is not a light-hearted woman. It's OK. I understand that now. I'll deal with it. She knows I'm not as serious as she. She's dealing with it.
But the important part is that we communicated positively today. I got her vision of the future. I got facts and results and plans.
I saw into her crystal ball and it was good.
She envisions a maintenance program. She has objectives and potential solutions for every issue I'm going through right now. She's being MY DOCTOR.
So believe it or not, I don't feel like a hot potato any longer. I feel like a patient. It's was reassuring, reaffirming, refreshing.
I never would have expected the source.
Essentially, we've both accepted that we're different. We seem to have accepted the huge problem with our communications. We didn't address it directly, but I'm suspecting our true issue is a simple matter of methods.
She's BLUNT. She's factual. I'm BLUNT. I try to be factual. The disconnect seems to be that her world is black and white. Mine is 24 bit greyscale. We're both equally irritating but we don't see life the same way at all.
She doesn't joke. I joke all the time. She wouldn't reveal half of what's written in this blog. I would never write the the research paper she would put in its place.
Neither of us is wrong. (Well, maybe both of us are, who knows.)
I'll give you an example of a small part of the exchange today. It happened as we were walking out of the exam room.
She said, "You look good."
I responded laughingly and with obviously feigned vanity, "I always look good."
She responded, "Well, I mean you look better than you did last time I saw you."
Yeah, re-read that. I don't think she was trying to be insulting. I think she was just considering her words against her perceived professional standards.
She is not a light-hearted woman. It's OK. I understand that now. I'll deal with it. She knows I'm not as serious as she. She's dealing with it.
But the important part is that we communicated positively today. I got her vision of the future. I got facts and results and plans.
I saw into her crystal ball and it was good.
She envisions a maintenance program. She has objectives and potential solutions for every issue I'm going through right now. She's being MY DOCTOR.
So believe it or not, I don't feel like a hot potato any longer. I feel like a patient. It's was reassuring, reaffirming, refreshing.
I never would have expected the source.
Monday, January 26, 2009
Current events.
I seldom comment on current events, but this really moved me:
Texas Judge gives 7 year old right to decide custody.
Dallas, TX, December 31, 2008
A seven year old boy was at the center of a county courtroom drama yesterday when he challenged a court ruling over who should have custody of him. The boy had a history of being beaten by his parents and the judge initially awarded custody to his aunt, in keeping with child custody law and regulation requiring that family unity be maintained to the highest degree possible.
The boy surprised the court when he proclaimed that his aunt beat him more than his parents and he adamantly refused to live with her. When the judge then suggested that he live with his grandparents, the boy cried and said that they also beat him. After considering the remainder of the immediate family and learning that domestic violence was apparently a way of life among them, the judge took the unprecedented step of allowing the boy to propose who should have custody of him.
After two recesses to check legal references and confer with the child welfare officials, the judge granted temporary custody to the Dallas Cowboys, whom the boy firmly believes are not capable of beating anyone.
Texas Judge gives 7 year old right to decide custody.
Dallas, TX, December 31, 2008
A seven year old boy was at the center of a county courtroom drama yesterday when he challenged a court ruling over who should have custody of him. The boy had a history of being beaten by his parents and the judge initially awarded custody to his aunt, in keeping with child custody law and regulation requiring that family unity be maintained to the highest degree possible.
The boy surprised the court when he proclaimed that his aunt beat him more than his parents and he adamantly refused to live with her. When the judge then suggested that he live with his grandparents, the boy cried and said that they also beat him. After considering the remainder of the immediate family and learning that domestic violence was apparently a way of life among them, the judge took the unprecedented step of allowing the boy to propose who should have custody of him.
After two recesses to check legal references and confer with the child welfare officials, the judge granted temporary custody to the Dallas Cowboys, whom the boy firmly believes are not capable of beating anyone.
Gore
I've had blood tests every day since I got out of the hospital. They called me today to tell me I'd 'graduated' and that I only needed blood tests on Tu, Fr, and Su.
Big deal. That still ties me down in Seattle. I guess it's not a BIG deal, because Ed has to be in Ottawa in two weeks. I'll see him this weekend, but not the next.
Of course, if I can get them to break the shackles, I could go to Ottawa with him for the weekend....... but do I wanna? Ottawa is COLD in Feb. Ed will be in seminars all day. Gotta think this one out. Look at the expense v the reward.
But now to the gore. I'm still not making blood and what's there is seeping out of me like I was a 100 year old bota bag.
I can easily fill (and I mean fill) a paper towel with blood just by blowing my nose. It's easy to do on command.
I bruise in places I haven't even bumped. The phlebotomist asked me today what I'd done to my hand. I had no idea I'd done anything. Sure as heck, the bruise is the size of my entire thumb.
I've got petechiae all over my arms and legs. Think "nude house painter".
My feet and ankles are bruising because of hydraulic pressure and edema.
There's blood on the sheets and pillow cases. (They're good sheets, so don't tell Ed.)
I guess this means I'm making blood..... after all, I'm apparently overflowing. Gotta talk to the team tomorrow. I feel slightly better, but I look like death.
Confused...... what's the objective here again?
Big deal. That still ties me down in Seattle. I guess it's not a BIG deal, because Ed has to be in Ottawa in two weeks. I'll see him this weekend, but not the next.
Of course, if I can get them to break the shackles, I could go to Ottawa with him for the weekend....... but do I wanna? Ottawa is COLD in Feb. Ed will be in seminars all day. Gotta think this one out. Look at the expense v the reward.
But now to the gore. I'm still not making blood and what's there is seeping out of me like I was a 100 year old bota bag.
I can easily fill (and I mean fill) a paper towel with blood just by blowing my nose. It's easy to do on command.
I bruise in places I haven't even bumped. The phlebotomist asked me today what I'd done to my hand. I had no idea I'd done anything. Sure as heck, the bruise is the size of my entire thumb.
I've got petechiae all over my arms and legs. Think "nude house painter".
My feet and ankles are bruising because of hydraulic pressure and edema.
There's blood on the sheets and pillow cases. (They're good sheets, so don't tell Ed.)
I guess this means I'm making blood..... after all, I'm apparently overflowing. Gotta talk to the team tomorrow. I feel slightly better, but I look like death.
Confused...... what's the objective here again?
Wednesday, January 21, 2009
Bagless
I'm home again. In fact, I got home last night (Tuesday) about 8:30 or 9 pm. P and S drove me home and then we accidentally popped the cork on a bottle of Gewurtztraminer.
Actually, the popping was deliberate. The dessication was indeliberate but absolute. S was the designated driver and she's good about it. P enjoyed the kind of stress relief a Type A businesswoman sometimes needs. I participated in some physiological decompression. We had a good talk, shared some thoughts, and then called it a night.
I got up this morning for blood tests and doctor visits. My schedule was three appointments and a trip to the post office. I felt pretty good all day but my creatinine level was moderately high.
Duh, I wonder why.
I have more tests in the morning and I've been well behaved all day. We'll see what the levels show. No man is an island and hydrology is an imprecise science.
Yeah, that was kinda obfuscated.
Actually, the popping was deliberate. The dessication was indeliberate but absolute. S was the designated driver and she's good about it. P enjoyed the kind of stress relief a Type A businesswoman sometimes needs. I participated in some physiological decompression. We had a good talk, shared some thoughts, and then called it a night.
I got up this morning for blood tests and doctor visits. My schedule was three appointments and a trip to the post office. I felt pretty good all day but my creatinine level was moderately high.
Duh, I wonder why.
I have more tests in the morning and I've been well behaved all day. We'll see what the levels show. No man is an island and hydrology is an imprecise science.
Yeah, that was kinda obfuscated.
Monday, January 19, 2009
The canary in the cage.
A couple of readers have asked about the treatment I've been getting. The video shows what's going on, but it's not a logical course of treatment for MM.
First, I should apologize for my rude behavior at the end of the video. I was feeling a bit irreverent. Sometimes I'm a bad boy. I'm not always politically correct. Sometimes I'm 53 going on 13.
But now to the explanation.
You saw a mouthpiece covering my prodigious beak. The mouthpiece was attached to a plastic hose, and the hose was attached to a SPAG (Small Particle Aerosol Generator).
Inside the SPAG is an antiviral drug called Ribavirin. A very very very fine powdered crystalline aerosol is created for me to breathe over a 2 hour period, three times a day. I breathe it directly through the mouthpiece.
The surrounding tent is designed to capture, control, and filter the particulate matter that escapes when I exhale. That's the 'jet engine' you heard in the video. The video has pretty accurate sound, and it's identical to the engine noises of a 727 or MD80 in ground operation. Thus, the comment about 'bird strikes'.
The filter system draws air past my face and rearward through the big blue filter system you can see behind me.
Most of the room is covered with sheets so that the crystals don't go everywhere. They're seriously abrasive. They irritate eyes, membranes, and skin. The technicians leave the room as soon as they turn the SPAG on. You can see the headwear they use so that they don't have to breathe what I breathe.
So what's the Ribavirin do? It kills/disables/deactivates the viruses I have. It's working. My chest cold/bronchitis/whatever is finally going away.
First, I should apologize for my rude behavior at the end of the video. I was feeling a bit irreverent. Sometimes I'm a bad boy. I'm not always politically correct. Sometimes I'm 53 going on 13.
But now to the explanation.
You saw a mouthpiece covering my prodigious beak. The mouthpiece was attached to a plastic hose, and the hose was attached to a SPAG (Small Particle Aerosol Generator).
Inside the SPAG is an antiviral drug called Ribavirin. A very very very fine powdered crystalline aerosol is created for me to breathe over a 2 hour period, three times a day. I breathe it directly through the mouthpiece.
The surrounding tent is designed to capture, control, and filter the particulate matter that escapes when I exhale. That's the 'jet engine' you heard in the video. The video has pretty accurate sound, and it's identical to the engine noises of a 727 or MD80 in ground operation. Thus, the comment about 'bird strikes'.
The filter system draws air past my face and rearward through the big blue filter system you can see behind me.
Most of the room is covered with sheets so that the crystals don't go everywhere. They're seriously abrasive. They irritate eyes, membranes, and skin. The technicians leave the room as soon as they turn the SPAG on. You can see the headwear they use so that they don't have to breathe what I breathe.
So what's the Ribavirin do? It kills/disables/deactivates the viruses I have. It's working. My chest cold/bronchitis/whatever is finally going away.
Anonymous?
Things are going well here. I'm getting better and rumor has it that I'll be escaping on Wednesday morning after a late Tuesday treatment.
It's been boring, but a couple of amazing things have happened this week too.
I've been spending the last few days trying to figure out which of my anonymous readers dropped a thoughtful little gift off at the front desk.
You'll notice that the motorcycle has a "white tiger" motif. Not everyone knows me as 2WheelTiger. Not many people know I have a small collection of toy motorcycles at home. Not many people knew exactly where to find me this past week.
The gift came with a card from "Anonymous Blog Poster". The text on the card suited my sense of humor perfectly. "....laughter is the best medicine. Unless you have cancer. Then you need chemo."
Similarly, I know there are people out there who really care about me. S and P actually bought and transported Kentucky Fried Chicken to me for dinner one night. They're devout and practicing vegetarians, but they called Ed in Canada and asked if there was anything special I might like. Ed was candid.
I know it was a HUGE deal for them to do what they did. It became a huge deal for me too. People just don't do things like that unless you're pretty high on their list. Believe me, that'll be one of the most memorable things anyone has ever done for me.
So between the very thoughtful toy motorcycle, the controversial KFC meal, and the constant commentary on here, I realize I'm a very lucky man.
It's been boring, but a couple of amazing things have happened this week too.
I've been spending the last few days trying to figure out which of my anonymous readers dropped a thoughtful little gift off at the front desk.
You'll notice that the motorcycle has a "white tiger" motif. Not everyone knows me as 2WheelTiger. Not many people know I have a small collection of toy motorcycles at home. Not many people knew exactly where to find me this past week.
The gift came with a card from "Anonymous Blog Poster". The text on the card suited my sense of humor perfectly. "....laughter is the best medicine. Unless you have cancer. Then you need chemo."
Similarly, I know there are people out there who really care about me. S and P actually bought and transported Kentucky Fried Chicken to me for dinner one night. They're devout and practicing vegetarians, but they called Ed in Canada and asked if there was anything special I might like. Ed was candid.
I know it was a HUGE deal for them to do what they did. It became a huge deal for me too. People just don't do things like that unless you're pretty high on their list. Believe me, that'll be one of the most memorable things anyone has ever done for me.
So between the very thoughtful toy motorcycle, the controversial KFC meal, and the constant commentary on here, I realize I'm a very lucky man.
Saturday, January 17, 2009
Thursday, January 15, 2009
Day two at the hospital
Boring.
I'm just sitting here being infused, hydrated, drugged, bored. TV is no release. Food is no release.
I'm getting better.
I'm just sitting here being infused, hydrated, drugged, bored. TV is no release. Food is no release.
I'm getting better.
Wednesday, January 14, 2009
Guess where I am?
I'm in the hospital for the next ten days.
I have CMV, RSV, and corona virus. They yanked me in here stat to treat infections. I get 3 tentings a day for 2 hours each. They'll go on for 10 days.
I have CMV, RSV, and corona virus. They yanked me in here stat to treat infections. I get 3 tentings a day for 2 hours each. They'll go on for 10 days.
Friday, January 09, 2009
Self awareness.
I'm burned out. I'm tired of playing the game. I'm not a fan of the daily grind.
It's the same stuff every day. Get up, take pills, hydrate, take pills, go to the SCCA, take pills, try to suffer as little discomfort as possible, take pills, go to bed alone in an enormous empty house.
Rinse, repeat.
There is nothing upbeat. Nothing positive. Nothing invigorating.
However, there's nothing really negative, downbeat, debilitating.
It's just DULL. Stagnant. Stale.
My excitement for the week? The SCCA prescribed 90Mg of Prednisone per day and then filled my prescription with 50Mg pills. Getting them to arrive at the intersection of Mathematics Boulevard and Practicality Lane was purposeful.
As far as new info is concerned, I've been shuffled from the transplant team to my regular oncologist, then back to the transplant team to the Long Term Followup Unit (LTFU). Maybe the last 2 weeks haven't been as dull as I said they were.
I've gotta say one thing for the LTFU. They don't sit on their fannies. As of 4pm today, two of my drugs are being reduced by 1/3. They're actually going to TRY some things to make me better. I like that.
Prednisone is decreasing from 90Mg to 75Mg. MMF is decreasing from TID to BID.
Ed just called. He'll be home in a few minutes. I'll be better then.
It's the same stuff every day. Get up, take pills, hydrate, take pills, go to the SCCA, take pills, try to suffer as little discomfort as possible, take pills, go to bed alone in an enormous empty house.
Rinse, repeat.
There is nothing upbeat. Nothing positive. Nothing invigorating.
However, there's nothing really negative, downbeat, debilitating.
It's just DULL. Stagnant. Stale.
My excitement for the week? The SCCA prescribed 90Mg of Prednisone per day and then filled my prescription with 50Mg pills. Getting them to arrive at the intersection of Mathematics Boulevard and Practicality Lane was purposeful.
As far as new info is concerned, I've been shuffled from the transplant team to my regular oncologist, then back to the transplant team to the Long Term Followup Unit (LTFU). Maybe the last 2 weeks haven't been as dull as I said they were.
I've gotta say one thing for the LTFU. They don't sit on their fannies. As of 4pm today, two of my drugs are being reduced by 1/3. They're actually going to TRY some things to make me better. I like that.
Prednisone is decreasing from 90Mg to 75Mg. MMF is decreasing from TID to BID.
Ed just called. He'll be home in a few minutes. I'll be better then.
Saturday, January 03, 2009
Like a crack whore on found money.
Holy moley.
This afternoon they gave me DOUBLE my usual steroid dose by infusion. Yup, twice the juice directly to the blood stream.
I'm tweaking like there's no tomorrow. Anything you need done in the next 12 hours? Fix Afganistan? Resurrect the housing market? Make GM profitable?
Wow. Just WOW. Cocaine and amphetamines got NOTHIN'. Trust me.
This afternoon they gave me DOUBLE my usual steroid dose by infusion. Yup, twice the juice directly to the blood stream.
I'm tweaking like there's no tomorrow. Anything you need done in the next 12 hours? Fix Afganistan? Resurrect the housing market? Make GM profitable?
Wow. Just WOW. Cocaine and amphetamines got NOTHIN'. Trust me.
The hospital update.
Several boring days here, but there's been lots of data generated. My PA Kevin is a great communicator.
2 more units of whole blood on Thursday. That's a lot of secret sauce in a short period. Testosterone level check - above normal. Adrenal function test - no results yet. Test being repeated. Drug changes - lighten the load on the kidneys and attempt to impact the lower GI issues. Successful so far! No diarrhea for almost 20 hours.
Rash is increasing, so they advised me this morning they're going to put me on a MASSIVE dose of my least favorite task master. 1mg per Kg of Prednisone. I've never been on such a high dose. I won't enjoy it, but the intent is to eliminate the rash rapidly and see if the gut GVHD can be controlled by a high dose.
My body is gonna FREAK.
Meanwhile, Ed has to get back to Vancouver and we drove down together. Looks like time for the bus or the train.
2 more units of whole blood on Thursday. That's a lot of secret sauce in a short period. Testosterone level check - above normal. Adrenal function test - no results yet. Test being repeated. Drug changes - lighten the load on the kidneys and attempt to impact the lower GI issues. Successful so far! No diarrhea for almost 20 hours.
Rash is increasing, so they advised me this morning they're going to put me on a MASSIVE dose of my least favorite task master. 1mg per Kg of Prednisone. I've never been on such a high dose. I won't enjoy it, but the intent is to eliminate the rash rapidly and see if the gut GVHD can be controlled by a high dose.
My body is gonna FREAK.
Meanwhile, Ed has to get back to Vancouver and we drove down together. Looks like time for the bus or the train.
Wednesday, December 31, 2008
Epic failure #2
Oncology visit today. Checking in to the hospital at 4pm local time. GVHD of the skin and gut. Hydration issues. Inability to eat.
I'm SO tired of this.
I'm SO tired of this.
Friday, December 26, 2008
Forks.
My brother and I were driving down to Seattle from Vancouver this morning and he made an interesting comment. He said he didn't know if he could do what I've done over the last two+ years.
Fact is, I know he could and would, and he'd probably be more gracious about it than I've been, but his comment caused me to think.
Each of us faces forks in our road on a daily basis. Sometimes the forks present viable options, sometimes the forks only provide an inconvenient detour.
One can never know what might have happened by taking the other fork. One can only know what's on the fork chosen.
When Ed and I were presented with my MM diagnosis, we saw it as a major detour in our lives. We saw no logical choice but the path we selected. Yes, we could have elected to do nothing, but we chose an aggressive course against the disease and that's the course we're still on.
However, this course has presented us with other significant forks in our road. That's the odd thing about the whole process. Once you get on this highway, you still need to make decisions and deal with the results. Having cancer does not absolve responsibility or remove future plans.
As an example, Ed could have refused his current position because of my condition, but we chose not to let the opportunity pass. In some ways it made our life more difficult in the short-term, but it will probably make our future (and certainly Ed's) better because we've taken this fork in the road. One can only postulate.
The thing that is most odd and unappreciated about the entire process is the incremental nature of it all. We started with a couple of cracked ribs and a feeling of malaise. Now we're beyond surgery and a pair of bone marrow transplants, into GVHD and asking ourselves 'quality of life' questions. We make social decisions based upon criteria only we understand. We've transitioned from me being a person with cancer to me being a cancer patient. Yes, I know it's semantics, but the difference is significant.
It's as if the diagnosis was a 5 pound weight we'd been given to carry around. At some random interval, somebody gives us another pound or two to add to our burden, and before long, you realize you're carrying half a ton of stuff and there's no place to put it down! Sometimes someone comes along and takes 5 pounds off the load by saying "you've engrafted", or ten pounds by saying "we see no tumor cells", but then they give you seven pounds back by saying "the graft isn't working".
From our perspective in the beginning, it would have been difficult to guess the size of the current load. From our current perspective it's difficult to estimate the size of our future load. We HOPE the load will be less than it is now, but we don't know. If I could foretell futures, I'd play the lotto.
Fact is, I know he could and would, and he'd probably be more gracious about it than I've been, but his comment caused me to think.
Each of us faces forks in our road on a daily basis. Sometimes the forks present viable options, sometimes the forks only provide an inconvenient detour.
One can never know what might have happened by taking the other fork. One can only know what's on the fork chosen.
When Ed and I were presented with my MM diagnosis, we saw it as a major detour in our lives. We saw no logical choice but the path we selected. Yes, we could have elected to do nothing, but we chose an aggressive course against the disease and that's the course we're still on.
However, this course has presented us with other significant forks in our road. That's the odd thing about the whole process. Once you get on this highway, you still need to make decisions and deal with the results. Having cancer does not absolve responsibility or remove future plans.
As an example, Ed could have refused his current position because of my condition, but we chose not to let the opportunity pass. In some ways it made our life more difficult in the short-term, but it will probably make our future (and certainly Ed's) better because we've taken this fork in the road. One can only postulate.
The thing that is most odd and unappreciated about the entire process is the incremental nature of it all. We started with a couple of cracked ribs and a feeling of malaise. Now we're beyond surgery and a pair of bone marrow transplants, into GVHD and asking ourselves 'quality of life' questions. We make social decisions based upon criteria only we understand. We've transitioned from me being a person with cancer to me being a cancer patient. Yes, I know it's semantics, but the difference is significant.
It's as if the diagnosis was a 5 pound weight we'd been given to carry around. At some random interval, somebody gives us another pound or two to add to our burden, and before long, you realize you're carrying half a ton of stuff and there's no place to put it down! Sometimes someone comes along and takes 5 pounds off the load by saying "you've engrafted", or ten pounds by saying "we see no tumor cells", but then they give you seven pounds back by saying "the graft isn't working".
From our perspective in the beginning, it would have been difficult to guess the size of the current load. From our current perspective it's difficult to estimate the size of our future load. We HOPE the load will be less than it is now, but we don't know. If I could foretell futures, I'd play the lotto.
Thursday, December 25, 2008
Merry Christmas '08
Christmas eve was eventful. I'd been in Seattle overnight for an appointment on Christmas eve during the day. It snowed like no body's business again.
The intent was to get my appointment done and head back up to Vancouver ASAP because my brother and his husband were flying in for a holiday visit. Their flight was late leaving Dallas, and then it was diverted to, drum-roll please, Seattle to take on more fuel.
I was still in Seattle and they were held captive in the big aluminum tube until it was finally allowed to fly north to Vancouver. When you consider taxi, take-off, and gate times, I think their trip from Seattle to Vancouver took longer than my drive in the ice and snow. But they're here now, and I'm here with Ed, and it's all good.
Two unpleasant things happened at the SCCA yesterday. I was 'emergency' scheduled for another transfusion because my numbers are so low. I waited 4 hours for the 'type and cross' and the blood delivery. When the blood finally arrived, IT WAS THE WRONG TYPE. 4 hours wasted and no transfusion! I have to return to Seattle tomorrow. Not good.
The second issue, and I have yet to tell this to my brother (but Ed knows) is that my oncologist, Dr. B. made the following statement. "I'm worried. The graft isn't working."
For the record, I've engrafted, meaning that the graft has taken over my body and apparently killed the tumors. However, the graft doesn't appear to be producing blood cells. Thus, I get growth factor "G" at every visit, and I've been getting transfusions like I had a severed limb.
I like Dr. B. He's not rude, he's simply factual. He tells it like it is without pussy-footing around. There's no pie-in-the-sky pandering and false hope. For him to say, "I'm worried. The graft isn't working." makes me think the graft isn't working and he's worried. (Duh!)
I'm worried. Ed is worried.
Of course, Ed is being positive about it, hoping and maintaining his cheery disposition. He's already investigating my options for another transplant. But i have to be honest. I don't know what to say or do about an option like that, even if it's possible.
Even Jesus was only crucified once.
The intent was to get my appointment done and head back up to Vancouver ASAP because my brother and his husband were flying in for a holiday visit. Their flight was late leaving Dallas, and then it was diverted to, drum-roll please, Seattle to take on more fuel.
I was still in Seattle and they were held captive in the big aluminum tube until it was finally allowed to fly north to Vancouver. When you consider taxi, take-off, and gate times, I think their trip from Seattle to Vancouver took longer than my drive in the ice and snow. But they're here now, and I'm here with Ed, and it's all good.
Two unpleasant things happened at the SCCA yesterday. I was 'emergency' scheduled for another transfusion because my numbers are so low. I waited 4 hours for the 'type and cross' and the blood delivery. When the blood finally arrived, IT WAS THE WRONG TYPE. 4 hours wasted and no transfusion! I have to return to Seattle tomorrow. Not good.
The second issue, and I have yet to tell this to my brother (but Ed knows) is that my oncologist, Dr. B. made the following statement. "I'm worried. The graft isn't working."
For the record, I've engrafted, meaning that the graft has taken over my body and apparently killed the tumors. However, the graft doesn't appear to be producing blood cells. Thus, I get growth factor "G" at every visit, and I've been getting transfusions like I had a severed limb.
I like Dr. B. He's not rude, he's simply factual. He tells it like it is without pussy-footing around. There's no pie-in-the-sky pandering and false hope. For him to say, "I'm worried. The graft isn't working." makes me think the graft isn't working and he's worried. (Duh!)
I'm worried. Ed is worried.
Of course, Ed is being positive about it, hoping and maintaining his cheery disposition. He's already investigating my options for another transplant. But i have to be honest. I don't know what to say or do about an option like that, even if it's possible.
Even Jesus was only crucified once.
Thursday, December 18, 2008
A visit with Dr. B.
Wednesday was my first visit to Dr. B. after the transplant. I had forgotten how agreeable he is.
I asked to be taken off of hydration. We agreed on what I needed to do, and then he took me off. Simple as that. Now I just have to hold up my end of the bargain.
3 liters of fluids every day. That's a bit over 100 US fluid ounces. In terms of cans of soda, that's about 8.5. (No, I'm not going to drink 8 cans of sugared beverages.)
I got more "G" yesterday. My counts are sliding again and we don't exactly know why.
Anyway, after the appointment, I loaded the truck and drove to Vancouver in a HORRIBLE snowstorm. There was almost a foot of snow in some areas. Snowplows made the interstate passable, but it was tough. Much of the roadway was frozen and I got a few wiggles out of the truck. Snowfall in one section was so heavy it was like driving into a fog bank.
But I'm here in Vancouver and it's warm in the house.
I asked to be taken off of hydration. We agreed on what I needed to do, and then he took me off. Simple as that. Now I just have to hold up my end of the bargain.
3 liters of fluids every day. That's a bit over 100 US fluid ounces. In terms of cans of soda, that's about 8.5. (No, I'm not going to drink 8 cans of sugared beverages.)
I got more "G" yesterday. My counts are sliding again and we don't exactly know why.
Anyway, after the appointment, I loaded the truck and drove to Vancouver in a HORRIBLE snowstorm. There was almost a foot of snow in some areas. Snowplows made the interstate passable, but it was tough. Much of the roadway was frozen and I got a few wiggles out of the truck. Snowfall in one section was so heavy it was like driving into a fog bank.
But I'm here in Vancouver and it's warm in the house.
Sunday, December 14, 2008
Thursday thru Sunday
The SCCA gave me one unit of platelets on Thursday, as we expected. It was the first time I've ever gotten an A+ blood product, so it sorta marked a milestone for me.
Unfortunately I had a reaction (hives) about 3/4 of the way through the transfusion, so they dosed me up with Benadryl. If you've never had The Big B infused directly into your bloodstream, it will knock you on your butt in about 6 seconds. I slept in Room 23 until about 3pm. No hives afterward.
Since I was so groggy, I didn't get much done at home after I returned. I packed my computers and a few minor things, but none of my bigger jobs were accomplished.
So on Friday morning, I awoke to a ton of work. I had things that I needed to do before wandering north to Vancouver. I packed drugs, tools, clothes, some holiday things, my suitcase, and some sundry items into the truck and drove to the border.
Border crossings are getting weird. I have a Nexus card that allows for rapid transit across the border, but holy-moley! All I had to do this time was hold my Nexus card up while I continued to roll toward the guard shack. Green lights all the way. When I arrived at the guard, he asked where I was headed in Canada, then asked if I was carrying anything that I intended on leaving in Canada. I said "No". He said "Have a nice day". I'd love to see the technology they use for reading these cards, pulling up the data, and passing 'acceptables' through. I know they use vehicle weight records and they actively X-ray commercial vehicles. I wonder if I get a little dose every time I pass.
Anyway, I've been in Vancouver with Ed for two nights. Our landlord had a holiday party last night that we were invited to. Interesting group of people and lots of food. Unfortunately I wore out fairly early and we had to go home. The trip downstairs was arduous (not) since it had started to snow.
This morning we awoke with about 4 inches of the powdery white stuff on the ground. Ed's revelations about snow are pretty refreshing, just because he has no experience with it. He revels in the brightness and the quiet.
I'm going back to Seattle *early* tomorrow morning. I have a blood draw at 10:15 on Monday and an oncologist appointment on Wednesday.
My hope/plan is to return to Vancouver from the 18th through January 6. Now I just have to convince my oncologist of that.
Unfortunately I had a reaction (hives) about 3/4 of the way through the transfusion, so they dosed me up with Benadryl. If you've never had The Big B infused directly into your bloodstream, it will knock you on your butt in about 6 seconds. I slept in Room 23 until about 3pm. No hives afterward.
Since I was so groggy, I didn't get much done at home after I returned. I packed my computers and a few minor things, but none of my bigger jobs were accomplished.
So on Friday morning, I awoke to a ton of work. I had things that I needed to do before wandering north to Vancouver. I packed drugs, tools, clothes, some holiday things, my suitcase, and some sundry items into the truck and drove to the border.
Border crossings are getting weird. I have a Nexus card that allows for rapid transit across the border, but holy-moley! All I had to do this time was hold my Nexus card up while I continued to roll toward the guard shack. Green lights all the way. When I arrived at the guard, he asked where I was headed in Canada, then asked if I was carrying anything that I intended on leaving in Canada. I said "No". He said "Have a nice day". I'd love to see the technology they use for reading these cards, pulling up the data, and passing 'acceptables' through. I know they use vehicle weight records and they actively X-ray commercial vehicles. I wonder if I get a little dose every time I pass.
Anyway, I've been in Vancouver with Ed for two nights. Our landlord had a holiday party last night that we were invited to. Interesting group of people and lots of food. Unfortunately I wore out fairly early and we had to go home. The trip downstairs was arduous (not) since it had started to snow.
This morning we awoke with about 4 inches of the powdery white stuff on the ground. Ed's revelations about snow are pretty refreshing, just because he has no experience with it. He revels in the brightness and the quiet.
I'm going back to Seattle *early* tomorrow morning. I have a blood draw at 10:15 on Monday and an oncologist appointment on Wednesday.
My hope/plan is to return to Vancouver from the 18th through January 6. Now I just have to convince my oncologist of that.
Wednesday, December 10, 2008
Drug changes and another transfusion
They're changing my drugs again. Tomorrow I start on Dapsone and drop the Bactrim. They're also going to do a blood test tomorrow that might drop my FK506 (Tacrolimus) dosage. Afterward, I'm getting a platelet transfusion. I'm bruising WAY too much.
Depending on tomorrow's volume, that will mean I've taken 20 or 21 units of whole blood or platelets in less than 2 years. I don't know how many units of blood I was given during my intestinal surgery.
I'm starting to see why it's important for people to give blood.
Depending on tomorrow's volume, that will mean I've taken 20 or 21 units of whole blood or platelets in less than 2 years. I don't know how many units of blood I was given during my intestinal surgery.
I'm starting to see why it's important for people to give blood.
Answers
Anonymous asked:
Well, I'm curious.... I know from blood typing that O is universal, so I would suppose that you could accept O donations, and probably will not be giving up any that you have - whatever the mixture - but do you ever become fully one type over time?
My S-I-L is going to be finishing up his Auto during the next few weeks and looking to the Allo in about six months from a female relative... because she is a 10... thank goodness. But will he have hot flashes afterwards?
I know you're not a doctor, but thot you might be able to draw some conclusions based on your research...? Thanks
Yes, I can accept O+ or O- whole blood. I should get A+ or AB+ platelets when available.
Yes, I will probably be 100% A+ within 90 to 180 days. That's 6 to 9 months post transplant.
No, you don't actually change gender, ever. It's just that your blood chromosomes will show you to be the other sex when they start looking for the XX or XY chromosomes. It's sorta like putting Ford stickers on a Toyota. It'll still be a Toyota every day of the year, but it could be misidentified as a Ford if you only look at one aspect of the car.
Here is an article that covers the XX and XY sex identification chromosomes.
Well, I'm curious.... I know from blood typing that O is universal, so I would suppose that you could accept O donations, and probably will not be giving up any that you have - whatever the mixture - but do you ever become fully one type over time?
My S-I-L is going to be finishing up his Auto during the next few weeks and looking to the Allo in about six months from a female relative... because she is a 10... thank goodness. But will he have hot flashes afterwards?
I know you're not a doctor, but thot you might be able to draw some conclusions based on your research...? Thanks
Yes, I can accept O+ or O- whole blood. I should get A+ or AB+ platelets when available.
Yes, I will probably be 100% A+ within 90 to 180 days. That's 6 to 9 months post transplant.
No, you don't actually change gender, ever. It's just that your blood chromosomes will show you to be the other sex when they start looking for the XX or XY chromosomes. It's sorta like putting Ford stickers on a Toyota. It'll still be a Toyota every day of the year, but it could be misidentified as a Ford if you only look at one aspect of the car.
Here is an article that covers the XX and XY sex identification chromosomes.
Tuesday, December 09, 2008
Unusual thing.
I had my summary conference today. It recapped everything involved with the mini-allo transplant and the results. No real sense in recapping it here again, but the doctor did mention one thing I haven't thought about in months:
It seems I'm still male and will continue to be, because my donor was also male.
Sounds strange, but chromosome-indicated gender actually changes if there's a gender difference between the donor and the host.
It seems I'm still male and will continue to be, because my donor was also male.
Sounds strange, but chromosome-indicated gender actually changes if there's a gender difference between the donor and the host.
Monday, December 08, 2008
Some more numbers
I've gotten a few new numbers in the last couple of days.
I have osteopenia. The numbers are in the 1.50-1.65 range. Osteoporosis starts at about 2.5. The condition is an expected side effect of MM. It is treatable.
My cholesterol numbers are high, but just marginally. Many of the drugs I'm on are known to contribute to high cholesterol. Nobody is worried.
In direct contrast to the previously quoted 97% to 3% Donor to Andre peripheral blood content, it seems that my blood type is changing. I used to be O+ and I'm now 60% A+ and only 40% O+. It is expected that I'll be completely A+ within the year. Blood transfusions are gonna get weird. I was given a nice little card that says something to the effect of, "If you check this guys blood type, call us and we'll explain your results."
For the record, I've felt like garbage for the last two days. The GI tract is NOT HAPPY.
I have osteopenia. The numbers are in the 1.50-1.65 range. Osteoporosis starts at about 2.5. The condition is an expected side effect of MM. It is treatable.
My cholesterol numbers are high, but just marginally. Many of the drugs I'm on are known to contribute to high cholesterol. Nobody is worried.
In direct contrast to the previously quoted 97% to 3% Donor to Andre peripheral blood content, it seems that my blood type is changing. I used to be O+ and I'm now 60% A+ and only 40% O+. It is expected that I'll be completely A+ within the year. Blood transfusions are gonna get weird. I was given a nice little card that says something to the effect of, "If you check this guys blood type, call us and we'll explain your results."
For the record, I've felt like garbage for the last two days. The GI tract is NOT HAPPY.
The SCCA does it again.
It's Monday evening and I'm going to recap this last two days of foul ups at the SCCA. I have a "Summary Meeting" tomorrow and I'm going to make sure it's not a one sided conversation. They'll get my summary too.
On Friday at 11am, I was given my FOURTH schedule for the day. It covered the coming week (now this week).
On Sunday at 5:01 pm, I got a phone call from the facility checking to see why I'd missed my Sunday blood draw. There is no blood draw on my schedule. Further, what's the good of checking on a patient after the lab is closed? The caller indicated that I should wait until my scheduled 8:30 am Monday blood draw appointment and that my numbers were such that I would be getting a platelet transfusion sometime Monday after a "type and cross".
So I arrived for my blood test this morning and there was no "type and cross" ordered. Why had I been asked to block off enough time for a transfusion? I spent the next 2 hours there waiting for the most recent results so they could say, "Nope, no transfusion. Have a nice day."
So I went home and returned for my 3:30 "Summary conference". I arrived at 3 and was escorted to a conference room. I thought they were running ahead of schedule and was happy for the surprise. A man entered and gave me a synopsis of my blood results. We covered everything and I went home.
At 4:00, I got a call from scheduling asking "Where are you?". It seems the meeting I was granted WAS NOT the meeting I was there for, and further, that said meeting wasn't on my schedule at all.
They asked if I could return to the facility. I told them I could and that I could be there at about 4:20.
While I was on my way, they called back and told me to come in tomorrow. Three freaking trips to the SCCA in one day because they can't print a schedule.
I very nearly went POSTAL.
This, on top of "losing my poop" and asking for extra samples, doing emergency scheduling of blood tests on Sunday afternoons (within the last month), I really wonder what the heck has happened to the SCCA in the last 6 weeks or so.
I had a candid conversation with a person involved in advocacy. I was told that recently many patients have complained about disorganization, crowding, and scheduling issues, YET THERE IS NO INCREASE IN PATIENT INTAKE. In other words, the place is coming unglued, but it's not because they have more patients.
Sad. They do wonderful work when they work wonderfully.
On Friday at 11am, I was given my FOURTH schedule for the day. It covered the coming week (now this week).
On Sunday at 5:01 pm, I got a phone call from the facility checking to see why I'd missed my Sunday blood draw. There is no blood draw on my schedule. Further, what's the good of checking on a patient after the lab is closed? The caller indicated that I should wait until my scheduled 8:30 am Monday blood draw appointment and that my numbers were such that I would be getting a platelet transfusion sometime Monday after a "type and cross".
So I arrived for my blood test this morning and there was no "type and cross" ordered. Why had I been asked to block off enough time for a transfusion? I spent the next 2 hours there waiting for the most recent results so they could say, "Nope, no transfusion. Have a nice day."
So I went home and returned for my 3:30 "Summary conference". I arrived at 3 and was escorted to a conference room. I thought they were running ahead of schedule and was happy for the surprise. A man entered and gave me a synopsis of my blood results. We covered everything and I went home.
At 4:00, I got a call from scheduling asking "Where are you?". It seems the meeting I was granted WAS NOT the meeting I was there for, and further, that said meeting wasn't on my schedule at all.
They asked if I could return to the facility. I told them I could and that I could be there at about 4:20.
While I was on my way, they called back and told me to come in tomorrow. Three freaking trips to the SCCA in one day because they can't print a schedule.
I very nearly went POSTAL.
This, on top of "losing my poop" and asking for extra samples, doing emergency scheduling of blood tests on Sunday afternoons (within the last month), I really wonder what the heck has happened to the SCCA in the last 6 weeks or so.
I had a candid conversation with a person involved in advocacy. I was told that recently many patients have complained about disorganization, crowding, and scheduling issues, YET THERE IS NO INCREASE IN PATIENT INTAKE. In other words, the place is coming unglued, but it's not because they have more patients.
Sad. They do wonderful work when they work wonderfully.
Saturday, December 06, 2008
Elvis has NOT left the building!
Many of my readers expect my posts to dwindle now that I'm reportedly "healthy". I'll agree that I blog less when there's nothing novel happening, but I expect to switch from reactionary blogging to simple updates. Things still happen in life, and if I switch from panic mode to 'living life' mode, I can easily blog at least once a week.
Truth is, I'm always worried about the people whose blogs just STOP at some point. I think it would be a disservice to my readers if I didn't show some continuance, some perseverance, some reason to fight the battle, some purpose to it all. Maybe it's vain, but if I can help one person survive the mental war with cancer, it will have been worth all the hours of typing and introspection.
I know it's been therapeutic for me. I hope it continues to be so for others.
Truth is, I'm always worried about the people whose blogs just STOP at some point. I think it would be a disservice to my readers if I didn't show some continuance, some perseverance, some reason to fight the battle, some purpose to it all. Maybe it's vain, but if I can help one person survive the mental war with cancer, it will have been worth all the hours of typing and introspection.
I know it's been therapeutic for me. I hope it continues to be so for others.
Friday, December 05, 2008
Just the facts.
I got all the facts today. Here they are:
Bone marrow is 100% from the donor.
Peripheral blood is 97% from the donor. (Only 3% "Andre")
Peripheral blood percentage may be higher than 97% because of transfusions.
M-spike, serum proteins are at undetectable levels by electophoresis.
M-spike, serum proteins are at minuscule levels by immunofixation.
CMV is inactive.
GVHD is not flaring.
Tapering off some of the drugs will take 6+ months. (MMF and Tacrolimus).
So I'm really gonna be released into the free world on December 10th. Certainly there are issues, such as drug dependency, potential GVHD flaring, and infection due to severe immunosuppression.
Ultimately, this is as good a result as we could have hoped for. I'm tired, frustrated, and HAPPY.
Bone marrow is 100% from the donor.
Peripheral blood is 97% from the donor. (Only 3% "Andre")
Peripheral blood percentage may be higher than 97% because of transfusions.
M-spike, serum proteins are at undetectable levels by electophoresis.
M-spike, serum proteins are at minuscule levels by immunofixation.
CMV is inactive.
GVHD is not flaring.
Tapering off some of the drugs will take 6+ months. (MMF and Tacrolimus).
So I'm really gonna be released into the free world on December 10th. Certainly there are issues, such as drug dependency, potential GVHD flaring, and infection due to severe immunosuppression.
Ultimately, this is as good a result as we could have hoped for. I'm tired, frustrated, and HAPPY.
Thursday, December 04, 2008
Day 97 and 98
Today is Day 97 since my mini-allo transplant. Everything is counted one day at a time on Planet Transplant, and day 100 is a supposed milestone. (So are 120, 150 and 180.)
When you think about it in these simplistic terms, it's rather ominous. Why would you count each individual day as a goal / objective if the risk wasn't insanely high?
Anyway, tomorrow is Day 98 and I get some test results. Serum calcium and my M-spike numbers will be provided. They'll tell the tale. No cancer was found in my bone marrow biopsy, but these last two tests will tell us if it seems to be gone everywhere. Notice I used the term "seems". We'll still never know exactly. The Sword of Damocles is a reality for us.
Basically, I'll get one of three different answers tomorrow:
1) The cancer appears to be in remission.
2) The cancer is trending toward remission.
3) The cancer is still active and seems to be returning.
In any of these cases, I still have GVHD. That may eventually decline with drug changes and my body's willingness to overcome issues. It's a process.
Regardless, I'll post more tomorrow.
When you think about it in these simplistic terms, it's rather ominous. Why would you count each individual day as a goal / objective if the risk wasn't insanely high?
Anyway, tomorrow is Day 98 and I get some test results. Serum calcium and my M-spike numbers will be provided. They'll tell the tale. No cancer was found in my bone marrow biopsy, but these last two tests will tell us if it seems to be gone everywhere. Notice I used the term "seems". We'll still never know exactly. The Sword of Damocles is a reality for us.
Basically, I'll get one of three different answers tomorrow:
1) The cancer appears to be in remission.
2) The cancer is trending toward remission.
3) The cancer is still active and seems to be returning.
In any of these cases, I still have GVHD. That may eventually decline with drug changes and my body's willingness to overcome issues. It's a process.
Regardless, I'll post more tomorrow.
Tuesday, December 02, 2008
Communication skills.
So I told you the SCCA lost my poo. It turns out they didn't. My results were in the system and they wanted to know why I submitted a second sample on Monday.
I rolled my eyes and explained that I had nothing better to do than crap in a a pair of 4 ounce cups twice a week. I also admitted to shoplifting enteric kits to support my habit. After all, the little "hats" sell for big bucks to local gay theater groups who need wardrobe simulations of a nun's headgear.
As punishment for abusing the system, they made me do another nasal wash, even though the symptoms haven't changed. Then they gave me another shot of "G" in spite of yesterday's transfusion.
Then I asked them what the plan was, because nobody has shared it with me even though I've asked. Apparently they've decided to graduate me on December 10th and release me to my regular oncologist (who only sees patients on Wednesdays now).
I made the mistake of opening my mouth again and mentioned that I wanted to go to Vancouver on December 13 for a few days. Apparently they think midtown Vancouver is somewhere in Kenya.
"What are you going to do if you get sick?"
"Go to the hospital. The closest one is 4 blocks and the biggest one is 6 blocks."
"Well, as long as you have a plan."
Ok, so here's the plan, just for the record.
PLAN OBJECTIVE: Don't die.
CONTINGENCIES:
1) Try not to get sick.
2) If you get sick, go to the hospital with Ed and get help.
Golly, I'm glad I wrote that down. The complexities are gonna require me to follow a script.
It's painfully obvious I need a vacation from the program. I've been on the leash too long. 27 months of uncertainty is stressing me out. Several months of living alone aren't helping. I wanna go HOME and that's wherever Ed is.
(BTW - we're still not "certain". My M-spike results won't be back until this Friday, and some of my serum results aren't what I'd hoped for. We're back to hoping for the best but preparing for the worst.)
I rolled my eyes and explained that I had nothing better to do than crap in a a pair of 4 ounce cups twice a week. I also admitted to shoplifting enteric kits to support my habit. After all, the little "hats" sell for big bucks to local gay theater groups who need wardrobe simulations of a nun's headgear.
As punishment for abusing the system, they made me do another nasal wash, even though the symptoms haven't changed. Then they gave me another shot of "G" in spite of yesterday's transfusion.
Then I asked them what the plan was, because nobody has shared it with me even though I've asked. Apparently they've decided to graduate me on December 10th and release me to my regular oncologist (who only sees patients on Wednesdays now).
I made the mistake of opening my mouth again and mentioned that I wanted to go to Vancouver on December 13 for a few days. Apparently they think midtown Vancouver is somewhere in Kenya.
"What are you going to do if you get sick?"
"Go to the hospital. The closest one is 4 blocks and the biggest one is 6 blocks."
"Well, as long as you have a plan."
Ok, so here's the plan, just for the record.
PLAN OBJECTIVE: Don't die.
CONTINGENCIES:
1) Try not to get sick.
2) If you get sick, go to the hospital with Ed and get help.
Golly, I'm glad I wrote that down. The complexities are gonna require me to follow a script.
It's painfully obvious I need a vacation from the program. I've been on the leash too long. 27 months of uncertainty is stressing me out. Several months of living alone aren't helping. I wanna go HOME and that's wherever Ed is.
(BTW - we're still not "certain". My M-spike results won't be back until this Friday, and some of my serum results aren't what I'd hoped for. We're back to hoping for the best but preparing for the worst.)
Sunday, November 30, 2008
Inconvenience
I was at the SCCA at 10:45 this morning for a blood test. Yes, it's Sunday, but they scheduled it anyway.
They called me back at about 3:30pm to figure out when I could get there to do another "type and cross" for a blood transfusion. I showed up at about 4:15 and gave another vial.
Now they've just called back and scheduled a transfusion (whole blood) for Monday morning at 8am. It's a 4 hour process. When I'm done, I get to come home and do my regular 4 hour infusion.
NOW HERE'S THE FUN PART: During the "type and cross", I was asked to provide another enteric sample because they "lost" the one I delivered on Friday. An enteric sample consists of 2 four ounce jars of POO! How in hell did they lose a bag full of POO? And if they lost it, where is it now? Does somebody have my medical record number and name now? After all, they were printed on the outside of the containers!
I'm getting a better explanation tomorrow. The errors are starting to accumulate rapidly.
They called me back at about 3:30pm to figure out when I could get there to do another "type and cross" for a blood transfusion. I showed up at about 4:15 and gave another vial.
Now they've just called back and scheduled a transfusion (whole blood) for Monday morning at 8am. It's a 4 hour process. When I'm done, I get to come home and do my regular 4 hour infusion.
NOW HERE'S THE FUN PART: During the "type and cross", I was asked to provide another enteric sample because they "lost" the one I delivered on Friday. An enteric sample consists of 2 four ounce jars of POO! How in hell did they lose a bag full of POO? And if they lost it, where is it now? Does somebody have my medical record number and name now? After all, they were printed on the outside of the containers!
I'm getting a better explanation tomorrow. The errors are starting to accumulate rapidly.
Friday, November 28, 2008
Reality
Remember "George"? George with the golden egg? The George I never got to meet because he was successfully released from the program before I could shake his hand? George who beat the odds with his positive outlook, interesting character, and supportive family?
This George, quoting from my previous blog entries:
From Tuesday, October 14, 2008
"And then there's a guy I'll call George. George is a character, and I mean a character in the literal sense. See, George wears cowboy clothes. George wears a denim jacket, denim pants, suitable shirt, and a straw cowboy hat that's a virtual caricature of a farmer's straw hat. George also carries around a large (18" high) golden egg. Yup. You read that right. A large golden egg. The egg has a hole in the bottom so he can stick his thumb in it to carry it with one hand. George even wears a single gardening glove to carry the egg so the gold paint doesn't get on his skin.
But George also wears comfortable Seattle-esque shoes. Klog looking things, shoes for ex-hippies. He's always accompanied by his son, a tall, good looking young man of mixed race. Judging by their vocabulary and speech patterns, both of them are well educated. Obviously, George isn't a chicken farmer, egg farmer, or even a post modernist bok choi farmer. He's an educated, liberal minded man with an alter-ego.
George has assumed a character. I've never seen George when he wasn't in farmer drag. The funny thing is, he seems to know LOTS of patients in the center. I guess his get-up has the same effect as my tiger ears. It makes people smile. It makes them start conversations.
Bravo George."
and from Sunday, October 26, 2008
"On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again."
Well, it's been just about a month since George was released from the program.
George died. Pneumonia or some other sort of infection got him.
Perspective.
This George, quoting from my previous blog entries:
From Tuesday, October 14, 2008
"And then there's a guy I'll call George. George is a character, and I mean a character in the literal sense. See, George wears cowboy clothes. George wears a denim jacket, denim pants, suitable shirt, and a straw cowboy hat that's a virtual caricature of a farmer's straw hat. George also carries around a large (18" high) golden egg. Yup. You read that right. A large golden egg. The egg has a hole in the bottom so he can stick his thumb in it to carry it with one hand. George even wears a single gardening glove to carry the egg so the gold paint doesn't get on his skin.
But George also wears comfortable Seattle-esque shoes. Klog looking things, shoes for ex-hippies. He's always accompanied by his son, a tall, good looking young man of mixed race. Judging by their vocabulary and speech patterns, both of them are well educated. Obviously, George isn't a chicken farmer, egg farmer, or even a post modernist bok choi farmer. He's an educated, liberal minded man with an alter-ego.
George has assumed a character. I've never seen George when he wasn't in farmer drag. The funny thing is, he seems to know LOTS of patients in the center. I guess his get-up has the same effect as my tiger ears. It makes people smile. It makes them start conversations.
Bravo George."
and from Sunday, October 26, 2008
"On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again."
Well, it's been just about a month since George was released from the program.
George died. Pneumonia or some other sort of infection got him.
Perspective.
Thursday, November 27, 2008
Thanksgiving day, 2008
Today was Thanksgiving day in the US. For my off-shore readers, it's our secular celebration of the fall harvest and a feast of extreme opulence. Yes, even the food kitchens put on an extra spoonful of beans on Thanksgiving.
Canada celebrates its Thanksgiving on the second Monday of October each year. The US celebrates on the fourth Thursday in November. As such, Ed was unable to come down from Vancouver for the US holiday. (But he did spend a long weekend here in October for Canada's holiday.)
Regardless, I wasn't alone this Thanksgiving. We have friends who live about 45 minutes away and I was invited. They shared their new home with 25+ family members and friends. The feast was amazing, the friendship excellent, and we each had plenty to be thankful for.
At least I certainly did. I have good readers, good friends, good family, a terrific spouse, and a good prognosis. That makes for a good life. 2009 looks like an overall 'up' for us.
Thank you all.
Canada celebrates its Thanksgiving on the second Monday of October each year. The US celebrates on the fourth Thursday in November. As such, Ed was unable to come down from Vancouver for the US holiday. (But he did spend a long weekend here in October for Canada's holiday.)
Regardless, I wasn't alone this Thanksgiving. We have friends who live about 45 minutes away and I was invited. They shared their new home with 25+ family members and friends. The feast was amazing, the friendship excellent, and we each had plenty to be thankful for.
At least I certainly did. I have good readers, good friends, good family, a terrific spouse, and a good prognosis. That makes for a good life. 2009 looks like an overall 'up' for us.
Thank you all.
Tuesday, November 25, 2008
Long and positive day at the SCCA
I spent nearly 6 hours at the SCCA today. Part of the day was spent discussing the results of my bone marrow biopsy last Friday.
The test was NEGATIVE, meaning there is no detectable cancer in my bone marrow. ("Negative" being very positive in this case.)
There are still a few peripheral tests that have to be run before we can claim victory, but things look pretty good right now.
I still have to deal with the GVHD, 39 pills, infusions, and topicals that fill my day, but it looks like we've been given a bit of a reprieve from the scythe of Death. I might have to pet his dog "Misery" from time to time, but his bark is often worse than his bite.
Realistically, I know that a single cancer cell hiding underneath my smallest toenail can re-start this whole process. I know that the treatments I've received over the last two years can give me a plethora of different cancers. I know I'll never be the man I was two years ago.
On the other hand, I look forward to becoming the man I'll be two years from now.
The test was NEGATIVE, meaning there is no detectable cancer in my bone marrow. ("Negative" being very positive in this case.)
There are still a few peripheral tests that have to be run before we can claim victory, but things look pretty good right now.
I still have to deal with the GVHD, 39 pills, infusions, and topicals that fill my day, but it looks like we've been given a bit of a reprieve from the scythe of Death. I might have to pet his dog "Misery" from time to time, but his bark is often worse than his bite.
Realistically, I know that a single cancer cell hiding underneath my smallest toenail can re-start this whole process. I know that the treatments I've received over the last two years can give me a plethora of different cancers. I know I'll never be the man I was two years ago.
On the other hand, I look forward to becoming the man I'll be two years from now.
Monday, November 24, 2008
Knockout!
Ed snored like a diesel chain saw last night, so I didn't get much sleep for my leukapheresis at 8 this morning. No big deal, right?
So they did a blood draw for research before the procedure. The nurse estimated about 500cc of draw.
Then she hooked me to the pump, turned it on and......
I went down for the count!
All I remember saying is: "I don't feel good." and then trying to keep my lower GI under control.
BP was incredibly low. Pulse rate was stunningly high. I perspired like an Arizona hitch-hiker in August. I had the pallor of a Renaissance virgin.
Suddenly the room FILLED with nurses (literally 5). One lowered the head of the bed and shut off the machine, another put a cold towel on my head, another suggested I undo my belt. The other two were doing nurse things I couldn't quite wrap my brain around at the time. Now I realize they'd taken some steps toward "we might need to resuscitate".
And all their little remedies worked. I returned to the land of the fully conscious in a couple of minutes. My assigned nurse turned the machine back on and I went to sleep. When I awoke, she was sitting in a chair just watching me.
Yeah, sometimes I complain about minor inconveniences and inefficiencies at the SCCA, but most of the time, the service is stellar.
Back again tomorrow at 9:30. Last appointment is at 2p
So they did a blood draw for research before the procedure. The nurse estimated about 500cc of draw.
Then she hooked me to the pump, turned it on and......
I went down for the count!
All I remember saying is: "I don't feel good." and then trying to keep my lower GI under control.
BP was incredibly low. Pulse rate was stunningly high. I perspired like an Arizona hitch-hiker in August. I had the pallor of a Renaissance virgin.
Suddenly the room FILLED with nurses (literally 5). One lowered the head of the bed and shut off the machine, another put a cold towel on my head, another suggested I undo my belt. The other two were doing nurse things I couldn't quite wrap my brain around at the time. Now I realize they'd taken some steps toward "we might need to resuscitate".
And all their little remedies worked. I returned to the land of the fully conscious in a couple of minutes. My assigned nurse turned the machine back on and I went to sleep. When I awoke, she was sitting in a chair just watching me.
Yeah, sometimes I complain about minor inconveniences and inefficiencies at the SCCA, but most of the time, the service is stellar.
Back again tomorrow at 9:30. Last appointment is at 2p
Saturday, November 22, 2008
Rough week
It's Saturday night of what's been a rough week.
Between the procedures, the tests, the exit process, and the continued GVHD, I haven't felt like doing much.
Friday's bone marrow biopsy and skin biopsy were obviously no fun. "Medical Photography" turned out to be a short series of photos at my physical limits. The steroid taper hasn't been kind, and I've been given "G" (Neupogen, the marrow growth stimulant) 3 times this week.
So my bones hurt, my GI is becoming inflamed, I'm not absorbing pills because of the GI issues, and I'm losing weight again.. Three pounds (~1.5 kilos) in a week.
Tomorrow I have a blood test and start a "24 hour urine" collection.
Monday, I start my day at 8am with a leukapheresis IF Sunday's blood test goes well. If the test comes up with bad numbers, I start with a transfusion and then the leukapheresis. I have something scheduled at the SCCA every single day next week.
Highlight of the week? Ed is here in Seattle with me this weekend. He's so good for my blood pressure.
Between the procedures, the tests, the exit process, and the continued GVHD, I haven't felt like doing much.
Friday's bone marrow biopsy and skin biopsy were obviously no fun. "Medical Photography" turned out to be a short series of photos at my physical limits. The steroid taper hasn't been kind, and I've been given "G" (Neupogen, the marrow growth stimulant) 3 times this week.
So my bones hurt, my GI is becoming inflamed, I'm not absorbing pills because of the GI issues, and I'm losing weight again.. Three pounds (~1.5 kilos) in a week.
Tomorrow I have a blood test and start a "24 hour urine" collection.
Monday, I start my day at 8am with a leukapheresis IF Sunday's blood test goes well. If the test comes up with bad numbers, I start with a transfusion and then the leukapheresis. I have something scheduled at the SCCA every single day next week.
Highlight of the week? Ed is here in Seattle with me this weekend. He's so good for my blood pressure.
Tuesday, November 18, 2008
A conundrum.
Recently, an anonymous reader commented that I am both insightful and honest. It was a wonderful compliment. Thank you, whoever you are.
However, I sometimes wonder if I'm merely self important and tactless.
To some extent, I have to think that what I write is somehow significant. Otherwise I wouldn't expend the time and effort. Therein could lie self importance.
Similarly, my honesty could come from thinking my prose is SO significant that I can go against social norms and write whatever I want.
So the conundrum is: Is this post insightful and honest, or is it selfish and tactless? I think perspective comes into play. Optimists might say the former, pessimists might say the latter. Analysts might say it's all about my personal therapy and that I don't have an altruistic bone in my body.
Maybe they're all correct.
Caveat lector - Let the reader beware.
However, I sometimes wonder if I'm merely self important and tactless.
To some extent, I have to think that what I write is somehow significant. Otherwise I wouldn't expend the time and effort. Therein could lie self importance.
Similarly, my honesty could come from thinking my prose is SO significant that I can go against social norms and write whatever I want.
So the conundrum is: Is this post insightful and honest, or is it selfish and tactless? I think perspective comes into play. Optimists might say the former, pessimists might say the latter. Analysts might say it's all about my personal therapy and that I don't have an altruistic bone in my body.
Maybe they're all correct.
Caveat lector - Let the reader beware.
New schedule, new plan.
Even though they forgot to order hydration for the upcoming week, today was fairly productive at the SCCA.
1) I've been put on a prednisone taper. I can finally start prying the monkey off my back. (And off Ed's back too.)
2) I have a class to attend tomorrow at 1:30. It's called "Long Term Follow Up - Departure orientation". What's that mean? It means they're sending me to classes on making a graceful exit from the program. From a positive perspective, this could mean I'm cured and almost done with this fiasco. From a negative perspective, it could mean I'm out of luck and they're almost done with me. I'll have the former, thank you!
3) There's a dental exam and a pulmonary test on Thursday. These are standard exit moves.
4) Friday shows, in the following order:
A) A fasting blood draw.
B) Physical therapy for one hour.
C) A bone marrow biopsy.
D) "Medical photography".
E) A team visit.
So I'm looking at the positive side. I'm finishing up. Graduation day is coming. I'm taking finals. I'm currently scheduled thru December 28 on a minor scale. 2009 might actually be in Vancouver with Ed.
Yippee!
1) I've been put on a prednisone taper. I can finally start prying the monkey off my back. (And off Ed's back too.)
2) I have a class to attend tomorrow at 1:30. It's called "Long Term Follow Up - Departure orientation". What's that mean? It means they're sending me to classes on making a graceful exit from the program. From a positive perspective, this could mean I'm cured and almost done with this fiasco. From a negative perspective, it could mean I'm out of luck and they're almost done with me. I'll have the former, thank you!
3) There's a dental exam and a pulmonary test on Thursday. These are standard exit moves.
4) Friday shows, in the following order:
A) A fasting blood draw.
B) Physical therapy for one hour.
C) A bone marrow biopsy.
D) "Medical photography".
E) A team visit.
So I'm looking at the positive side. I'm finishing up. Graduation day is coming. I'm taking finals. I'm currently scheduled thru December 28 on a minor scale. 2009 might actually be in Vancouver with Ed.
Yippee!
Sunday, November 16, 2008
Mellow observations.
I've been a bit introspective today. I've made some realizations:
1) While I've been frustrated/angry over the SCCA's recent inefficiencies, I have to realize that these are anomalies. They will be corrected and they will resolve themselves if we all cooperate. In general, the SCCA has a terrific program.
2) My perceptions might have changed in the last 60 days. I might be over-reacting to situations. Seasonal changes and general malaise could be contributing factors. I need to control my temper and think before I open my mouth.
3) A perusal of various other MM blogs from a dozen or more authors is quite humbling. I find the average MM blogger to be intelligent, witty, articulate, and stunningly self-aware. I also find it interesting that NONE of them is giving up. Every one of the blogs is about moving forward in some way.
Now, as for today's health, I think my cold is getting worse. The shortness of breath is increasing slightly. Further, I've really felt out-of-sorts today. I did 2 loads of laundry and that's about it. The majority of the day was spent in front of the computer. This hasn't been my finest hour.
And now, you know the rest of the story.
1) While I've been frustrated/angry over the SCCA's recent inefficiencies, I have to realize that these are anomalies. They will be corrected and they will resolve themselves if we all cooperate. In general, the SCCA has a terrific program.
2) My perceptions might have changed in the last 60 days. I might be over-reacting to situations. Seasonal changes and general malaise could be contributing factors. I need to control my temper and think before I open my mouth.
3) A perusal of various other MM blogs from a dozen or more authors is quite humbling. I find the average MM blogger to be intelligent, witty, articulate, and stunningly self-aware. I also find it interesting that NONE of them is giving up. Every one of the blogs is about moving forward in some way.
Now, as for today's health, I think my cold is getting worse. The shortness of breath is increasing slightly. Further, I've really felt out-of-sorts today. I did 2 loads of laundry and that's about it. The majority of the day was spent in front of the computer. This hasn't been my finest hour.
And now, you know the rest of the story.
Saturday, November 15, 2008
2WheelTiger is open.
For those who are following my external life, my new website is open.
It's http://www.2WheelTiger.com. It's not fully fleshed-out yet, but I'm moving lots of stuff from my CycleTips and Wandering-Tourist blogs into it. Before I post new adventures, I'll be adding new articles about old adventures.
One of the nicer features allows you to go into the Media section and run a continuous slideshow of my travel pics in full screen mode. I have hundreds of them that need to be uploaded.
So check back from time to time. RSS feeds are available.
It's http://www.2WheelTiger.com. It's not fully fleshed-out yet, but I'm moving lots of stuff from my CycleTips and Wandering-Tourist blogs into it. Before I post new adventures, I'll be adding new articles about old adventures.
One of the nicer features allows you to go into the Media section and run a continuous slideshow of my travel pics in full screen mode. I have hundreds of them that need to be uploaded.
So check back from time to time. RSS feeds are available.
Solo weekend
I've had some kind of upper respiratory trouble for a little over a week. Well, it looks like Ed caught it from me while he was here. (Or at least it would appear that way.) There are people in his office who are claiming to be sick, so Ed might have some other illness, but looking at the symptoms, he has what I have.
Clear discharge. Coughing. Sore throat. NO fever. Basso Profundo voice. Hmmmm.......
Regardless, he feels pretty bad. He feels that way because he has an immune system and his body is reacting normally. Me? I don't feel bad. Yeah, I have some breathing problems, but I don't feel like I'm sick. Duh, I have no immune system!
(Is there any wonder why I want to get off prednisone? Besides having a virtually no immune system, the prednisone hides any inflammation or illness!)
Anyway, Ed's staying up in Vancouver this weekend. We're not terribly worried about being reinfected with the same strain, but since there's a chance that his illness is from someone in his lab...... It's better to stay apart for a few more days than it is for me to get a fresh infection I can't fight.
As I told Ed, "It's better to be lonely than dead."
Clear discharge. Coughing. Sore throat. NO fever. Basso Profundo voice. Hmmmm.......
Regardless, he feels pretty bad. He feels that way because he has an immune system and his body is reacting normally. Me? I don't feel bad. Yeah, I have some breathing problems, but I don't feel like I'm sick. Duh, I have no immune system!
(Is there any wonder why I want to get off prednisone? Besides having a virtually no immune system, the prednisone hides any inflammation or illness!)
Anyway, Ed's staying up in Vancouver this weekend. We're not terribly worried about being reinfected with the same strain, but since there's a chance that his illness is from someone in his lab...... It's better to stay apart for a few more days than it is for me to get a fresh infection I can't fight.
As I told Ed, "It's better to be lonely than dead."
Stem to stern
At about 10a on Friday, the SCCA realized they hadn't scheduled an appointment with me, so they called me as I exited the parking lot from my blood test and said "Can we see you at 2p?"
Whatever! I hope this series of stupid moves doesn't continue beyond this week. I know that a complete change of staff can do that to an organization, but this is out of control.
Regardless, the 2p meeting was interesting. Again, they decided to do nothing and change nothing based on the latest results and my new symptoms. Here are the primary issues:
1) I still have an upper respiratory infection of some sort. No fever, but there's a lot of clear discharge from my nose and throat. All of the assays show I have no infection.
2) I get stunningly short of breath. Walking a block makes me see stars and pant like a marathoner. Breath sounds are normal and X-rays are normal.
3) I bruise at the drop of a hat. It's so bad that I jokingly said, "If I push right here, I'll probably get a bruise." Sure as hell, I had a bruise right there in about 2 hours. Mind you, I'm not on blood thinners and my blood counts have been lower than this in the past. We have no idea what's going on.
So, if you couple these new developments with the results of Wednesday's spelunking expedition. You come up with.......
GVHD from stem to stern. No CMV, just plain old garden variety Graft V Host Disease. The donor cells are trying to kill me.
Now remember, that's not a completely bad thing. We have to have GVHD in order to get Graft V Tumor (GVT). So part of me is saying, "Yipee" and the other part is saying "Please get me off these damned steroids!"
Meanwhile, the SCCA is saying, "We need to get you off the steroids, but we're not going to do anything about it yet." They've been procrastinating for weeks.
Yesterday they said they'd make a decision on Tuesday at the regular clinic meeting. What they don't know is that I'll be making the decision for them. If they decide they're going to do nothing again - make no decisions and make no changes - I'm simply going to tell them I'll be putting myself on a prednisone taper.
That will give them three options. They will have to:
1) Allow their patient to do something that's not in his best interest. (If that's their belief.)
2) Offer a suitable taper schedule because they might as well control the inevitable.
3) Have a serious conversation amongst themselves about what to change.
I might not have the best poker hand at the table, but I'm not scared of a good bluff.
Whatever! I hope this series of stupid moves doesn't continue beyond this week. I know that a complete change of staff can do that to an organization, but this is out of control.
Regardless, the 2p meeting was interesting. Again, they decided to do nothing and change nothing based on the latest results and my new symptoms. Here are the primary issues:
1) I still have an upper respiratory infection of some sort. No fever, but there's a lot of clear discharge from my nose and throat. All of the assays show I have no infection.
2) I get stunningly short of breath. Walking a block makes me see stars and pant like a marathoner. Breath sounds are normal and X-rays are normal.
3) I bruise at the drop of a hat. It's so bad that I jokingly said, "If I push right here, I'll probably get a bruise." Sure as hell, I had a bruise right there in about 2 hours. Mind you, I'm not on blood thinners and my blood counts have been lower than this in the past. We have no idea what's going on.
So, if you couple these new developments with the results of Wednesday's spelunking expedition. You come up with.......
GVHD from stem to stern. No CMV, just plain old garden variety Graft V Host Disease. The donor cells are trying to kill me.
Now remember, that's not a completely bad thing. We have to have GVHD in order to get Graft V Tumor (GVT). So part of me is saying, "Yipee" and the other part is saying "Please get me off these damned steroids!"
Meanwhile, the SCCA is saying, "We need to get you off the steroids, but we're not going to do anything about it yet." They've been procrastinating for weeks.
Yesterday they said they'd make a decision on Tuesday at the regular clinic meeting. What they don't know is that I'll be making the decision for them. If they decide they're going to do nothing again - make no decisions and make no changes - I'm simply going to tell them I'll be putting myself on a prednisone taper.
That will give them three options. They will have to:
1) Allow their patient to do something that's not in his best interest. (If that's their belief.)
2) Offer a suitable taper schedule because they might as well control the inevitable.
3) Have a serious conversation amongst themselves about what to change.
I might not have the best poker hand at the table, but I'm not scared of a good bluff.
Wednesday, November 12, 2008
LIVID at the SCCA
On Monday, I was told they would do a spelunking adventure on Wednesday. I was also told that they would want a blood test early in the day so that they could determine if I needed platelets before the expedition.
A bunch of hoo-hoo transpired and I was finally given a 10am blood test appointment for today, Wednesday. I appeared on time, submitted my two vials, and then waited for my 12:30 Sedation Assessment. Yup, 2.5 hours sitting in "respiratory isolation". Remember my minor head cold? "Go sit in that little room and read the 'Welcome to the SCCA' brochure 1200 times."
I was supposed to have the expedition done at 1:30.
Well, it didn't happen at 12:30 or 1:30. It happened at almost 3:00, and you know what? THEY DIDN'T DO ANYTHING WITH THE BLOOD SAMPLE. THERE WERE NO TESTS. THERE WERE NO RESULTS. THERE WAS NOTHING. NOTHING!
How in HELL do you write an order for a blood draw that's not associated with a specific test? How the HELL do you do a draw without performing a test?
Now, do you know what they want me to do at 10:30 tomorrow (Thursday)? COME IN FOR A BLOOD TEST so I can come back on Friday for another blood test at 8:30.
Do you know WHY? It's because they're worried that I might need platelets. This means they'll do the draw, do some tests, and maybe call me at 2pm to come back and get a 4 hour infusion.
Gee, I hope they don't need to do another "type and cross" before the platelets. That would mean I'd have to come back AGAIN and spend my entire Friday there too!
And apparently my team thinks we have an appointment on Friday. It doesn't show up on my schedule.
FWIW - my PAs are 'job sharing' with one working early in the week and the other working late in the week. My scheduler is on vacation.
What we have here is a failure to communicate. Morons. I'm gonna go ballistic tomorrow.
A bunch of hoo-hoo transpired and I was finally given a 10am blood test appointment for today, Wednesday. I appeared on time, submitted my two vials, and then waited for my 12:30 Sedation Assessment. Yup, 2.5 hours sitting in "respiratory isolation". Remember my minor head cold? "Go sit in that little room and read the 'Welcome to the SCCA' brochure 1200 times."
I was supposed to have the expedition done at 1:30.
Well, it didn't happen at 12:30 or 1:30. It happened at almost 3:00, and you know what? THEY DIDN'T DO ANYTHING WITH THE BLOOD SAMPLE. THERE WERE NO TESTS. THERE WERE NO RESULTS. THERE WAS NOTHING. NOTHING!
How in HELL do you write an order for a blood draw that's not associated with a specific test? How the HELL do you do a draw without performing a test?
Now, do you know what they want me to do at 10:30 tomorrow (Thursday)? COME IN FOR A BLOOD TEST so I can come back on Friday for another blood test at 8:30.
Do you know WHY? It's because they're worried that I might need platelets. This means they'll do the draw, do some tests, and maybe call me at 2pm to come back and get a 4 hour infusion.
Gee, I hope they don't need to do another "type and cross" before the platelets. That would mean I'd have to come back AGAIN and spend my entire Friday there too!
And apparently my team thinks we have an appointment on Friday. It doesn't show up on my schedule.
FWIW - my PAs are 'job sharing' with one working early in the week and the other working late in the week. My scheduler is on vacation.
What we have here is a failure to communicate. Morons. I'm gonna go ballistic tomorrow.
Friday, November 07, 2008
Pre-lunking
Today I had a blood test, physical therapy, and a team appointment.
The blood test was horrible. Of the 13 items on the CBC, 10 of them were terribly low. I seem to be running on about 1/2 the blood density I should have. Gancyclovir is the primary culprit in this problem. In the words of the PA, "It's a poison."
Yippee.
So they've decided the spelunking expedition will be on Wednesday at about noon-thirty. They plan on having me out of there (conscious) at about 4p. I have a blood test beforehand at 11:45.
On Monday, I have to be there at 7:15a. Yeah, SEVEN FIFTEEN for a blood test before a team visit at 9:45a. I'll probably come home and sleep some more afterward.
My PT session was interesting. It was difficult to get my heart rate up. I wasn't sweating or working very hard, but my pulse only went from 71 to 83 in the entire session. You'd think that my low blood density would make the rate increase rapidly, but it didn't. Odd.
(If memory serves, human pulse and breathing rate are triggered off carbon dioxide levels in the blood, so there might not be a direct correlation between work levels and pulse in people with low blood densities. I need to investigate this.)
Anyway, I guess Monday is pre-spelunking data. Then Wednesday is the expedition. Eventually they'll find out if I have GVHD, CMV, or both.
What's the REAL goal? It's to get me off steroids. Just like back in early '07, the prednisone could be hiding the Wicked Witch of the West inside my body. I really don't want them to open me up again. Really. I mean REALLY.
The blood test was horrible. Of the 13 items on the CBC, 10 of them were terribly low. I seem to be running on about 1/2 the blood density I should have. Gancyclovir is the primary culprit in this problem. In the words of the PA, "It's a poison."
Yippee.
So they've decided the spelunking expedition will be on Wednesday at about noon-thirty. They plan on having me out of there (conscious) at about 4p. I have a blood test beforehand at 11:45.
On Monday, I have to be there at 7:15a. Yeah, SEVEN FIFTEEN for a blood test before a team visit at 9:45a. I'll probably come home and sleep some more afterward.
My PT session was interesting. It was difficult to get my heart rate up. I wasn't sweating or working very hard, but my pulse only went from 71 to 83 in the entire session. You'd think that my low blood density would make the rate increase rapidly, but it didn't. Odd.
(If memory serves, human pulse and breathing rate are triggered off carbon dioxide levels in the blood, so there might not be a direct correlation between work levels and pulse in people with low blood densities. I need to investigate this.)
Anyway, I guess Monday is pre-spelunking data. Then Wednesday is the expedition. Eventually they'll find out if I have GVHD, CMV, or both.
What's the REAL goal? It's to get me off steroids. Just like back in early '07, the prednisone could be hiding the Wicked Witch of the West inside my body. I really don't want them to open me up again. Really. I mean REALLY.
Wednesday, November 05, 2008
Tree rings.
For some time, scientists have been saying that we can tell the history of weather by inspecting tree rings. If I remember the relationships correctly, wet summers make the rings thicker and thin rings tell us there was a drought. If you look at really old trees, you can supposedly see cyclic patterns in weather.
Humans appear to be the same as trees. Our hair and nails are our rings.
I've got 4 distinct patterns of thickness on each nail. There's direct temporal correlation between every nail on my hands and toes. The growth patterns have changed, the coloring has changed, and there are ridges on all of them.
These aren't funny little stripes that go down the length of the nail. They're across the width of each nail. They represent a health timeline over the last 60 days and they're far from subtle. They can be seen from several feet away.
As far as hair, I haven't whipped out the microscope, but I know my hair color is changing. It used to be dark brown with a lot of grey. Now it's a medium brown with less grey. Having talked to a few former transplantees, this is not uncommon.
On the general health front, I'm still having lower GI troubles. The docs want to do a spelunking expedition on Friday but I want them to wait until Monday when Ed is in town. It seems they're being pressured for info by my regular oncologist. He wants to know if he should treat me further for GVHD or CMV. (The CMV counts are going down so we know the drugs are working.) Odd, but the GI docs also mentioned that my problem(s) could be the result of my MMF dose. Funny how I've never heard that from the oncology team before.
Oh, the team expects I'll need another transfusion before the spelunking expedition. My platelet count is going down.
Kidney function is good. Energy is good. I improve a little bit every day.
Humans appear to be the same as trees. Our hair and nails are our rings.
I've got 4 distinct patterns of thickness on each nail. There's direct temporal correlation between every nail on my hands and toes. The growth patterns have changed, the coloring has changed, and there are ridges on all of them.
These aren't funny little stripes that go down the length of the nail. They're across the width of each nail. They represent a health timeline over the last 60 days and they're far from subtle. They can be seen from several feet away.
As far as hair, I haven't whipped out the microscope, but I know my hair color is changing. It used to be dark brown with a lot of grey. Now it's a medium brown with less grey. Having talked to a few former transplantees, this is not uncommon.
On the general health front, I'm still having lower GI troubles. The docs want to do a spelunking expedition on Friday but I want them to wait until Monday when Ed is in town. It seems they're being pressured for info by my regular oncologist. He wants to know if he should treat me further for GVHD or CMV. (The CMV counts are going down so we know the drugs are working.) Odd, but the GI docs also mentioned that my problem(s) could be the result of my MMF dose. Funny how I've never heard that from the oncology team before.
Oh, the team expects I'll need another transfusion before the spelunking expedition. My platelet count is going down.
Kidney function is good. Energy is good. I improve a little bit every day.
Thursday, October 30, 2008
....and counting toward the future.
I just had an email exchange with an old friend. I thought a few things in the email might be relevant here. Here's the tally.
"To be honest, staying ahead of the cancer game is a task..... a duty if you will. I have my alarm set at 7am so I can start my first round of meds. Then I have another round at 9am. Sometime around there I need to start two infusions (1.25 liters of fluid piped directly into my bloodstream via a central venous catheter [Hickman]). Then I have more meds at 3, more at 6, another infusion of 250 ml, and my last round of drugs at 11pm.
Some of the drugs prevent me from eating dairy during a 3 hour period (3 times a day). Some should be taken on an empty stomach. Some should be taken with food. Some make me absolutely staggering drunk. Some raise my BP. Some lower my BP so the drugs that raise it don't kill me. Another is a topical steroid for my GI that I eat on a cookie 4 times a day.
I just counted. I take 38 individual pills, 4 cookies, 3 infusions, and two topical ointments a day. Every day. That number increases if I take anything for pain. Generally I don't, but sometimes a couple of Tylenol come in handy.
I really try not to complain. I feel pretty decent in general and my condition has improved since the most recent transplant. I'm getting things done and I'm taking care of a couple of those creative projects you know I enjoy. I'm also working on the 2WheelTiger.com site for the near future. If I haven't told you about 2WheelTiger, it's going to be a travel and adventure site based upon what's going on with yours truly. The objective is to get people to live before they die. It'll be a contribution/donation site. I have a developer working on it as we speak. So I guess what I'm saying is that I'm not giving up. I'm actually looking forward to the future and making plans.
Thanks for your concern. It means a lot to me."
Anyway, I thought I'd share.
"To be honest, staying ahead of the cancer game is a task..... a duty if you will. I have my alarm set at 7am so I can start my first round of meds. Then I have another round at 9am. Sometime around there I need to start two infusions (1.25 liters of fluid piped directly into my bloodstream via a central venous catheter [Hickman]). Then I have more meds at 3, more at 6, another infusion of 250 ml, and my last round of drugs at 11pm.
Some of the drugs prevent me from eating dairy during a 3 hour period (3 times a day). Some should be taken on an empty stomach. Some should be taken with food. Some make me absolutely staggering drunk. Some raise my BP. Some lower my BP so the drugs that raise it don't kill me. Another is a topical steroid for my GI that I eat on a cookie 4 times a day.
I just counted. I take 38 individual pills, 4 cookies, 3 infusions, and two topical ointments a day. Every day. That number increases if I take anything for pain. Generally I don't, but sometimes a couple of Tylenol come in handy.
I really try not to complain. I feel pretty decent in general and my condition has improved since the most recent transplant. I'm getting things done and I'm taking care of a couple of those creative projects you know I enjoy. I'm also working on the 2WheelTiger.com site for the near future. If I haven't told you about 2WheelTiger, it's going to be a travel and adventure site based upon what's going on with yours truly. The objective is to get people to live before they die. It'll be a contribution/donation site. I have a developer working on it as we speak. So I guess what I'm saying is that I'm not giving up. I'm actually looking forward to the future and making plans.
Thanks for your concern. It means a lot to me."
Anyway, I thought I'd share.
Wednesday, October 29, 2008
Tuesday's 10+ hour day.
Yesterday I had my usual Tuesday appointments at the SCCA. Little did I know how it would turn out.
I arrived at 9a for my blood draw. I think it was only 8 vials this time. Then I went upstairs to have a meeting with Nutrition. There's been no change in my GI since Friday. Hmmmmm... time for more tests, including the threat of renewed spelunking from each end. Fortunately the spelunkers declined. Then came time for the ID doctor to poke her head in. She said I was probably doing fine from her side, but that we needed to decide whether I have GVHD or CMV (or both). She wanted some tests too. You know the tests. They're the ones you do privately. Nobody wants to help you. You're on your own, fella!
And then it was time to meet with the team. Would we decrease the steroids? Would we increase them? Decision: Do nothing. Keep them where they are and we'll see you on Friday.
Then came the shocker. "Your hematocrit is only 25. When would you like your transfusion? Today or tomorrow?" I chose "today" (Tuesday). Let's finish this little fiasco in one move. Don't drag it out.
So I went downstairs to get another blood test, a type and cross, to see if my blood type was the same as it used to be. It was. O+
At 3p, they hooked me up. At 7:15p, they disconnected me and let me go home. Two units of whole blood.
I was grouchy for some reason. I've been slightly tired all day. Hopefully tomorrow will be a bit more productive now that I have some red blood cells again.
I arrived at 9a for my blood draw. I think it was only 8 vials this time. Then I went upstairs to have a meeting with Nutrition. There's been no change in my GI since Friday. Hmmmmm... time for more tests, including the threat of renewed spelunking from each end. Fortunately the spelunkers declined. Then came time for the ID doctor to poke her head in. She said I was probably doing fine from her side, but that we needed to decide whether I have GVHD or CMV (or both). She wanted some tests too. You know the tests. They're the ones you do privately. Nobody wants to help you. You're on your own, fella!
And then it was time to meet with the team. Would we decrease the steroids? Would we increase them? Decision: Do nothing. Keep them where they are and we'll see you on Friday.
Then came the shocker. "Your hematocrit is only 25. When would you like your transfusion? Today or tomorrow?" I chose "today" (Tuesday). Let's finish this little fiasco in one move. Don't drag it out.
So I went downstairs to get another blood test, a type and cross, to see if my blood type was the same as it used to be. It was. O+
At 3p, they hooked me up. At 7:15p, they disconnected me and let me go home. Two units of whole blood.
I was grouchy for some reason. I've been slightly tired all day. Hopefully tomorrow will be a bit more productive now that I have some red blood cells again.
Sunday, October 26, 2008
I guess it's been a week again.
My friend PS sent me an email indicating I'd been lax again with my postings. I hadn't realized until this very minute that it's been a week. Wow, time flies when you're having fun!
I'm back on a regular schedule at the SCCA. Tuesdays and Fridays are the norm. Drugs get changed every couple of days because they make some determination based on the blood counts. Some drugs go up, some go down. The total load is still pretty big, but the type of drugs changes. Basically they're trying to lessen the load on the kidneys.
The good news on Friday was that my kidney function numbers are in the normal range. We're staying ahead of potential kidney damage.
The bad news Friday was that if my GVHD symptoms continue, they're going to increase my steroid load to 80mg per day from 40mg/day. Not looking forward to that.
A dietitian's analysis suggests that some of my lower GI troubles are caused by the inability of my small intestine to absorb fats. This puts undigested fats into my large intestine, and the result is, shall I say, "often urgent". And so, I'm supposed to change my diet toward extremely lean proteins and completely away from spicy foods.
Fish, flank steak, extremely lean pork, beans. Yup, nothing quite like Fajitas with no seasoning, no onions, no peppers. Might as well be beef jerky in the Twilight Zone. I had Pho with meatball and rare beef today. I added no mint, bean sprouts, peppers, or cilantro. 30 minutes after my meal, I was DYING. There was an emergency going on under my belt. Code 3. We actually stopped at the local hospital so I could resolve the problem.
On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again.
Overall, my energy level has been pretty good. I've been doing a few small modification projects on the motorcycle. They exercise the brain, make my body move in untypical ways, and give me some sense of accomplishment. I take the projects slowly, don't lift any heavy weights, and enjoy myself 3-4 hours every day in the garage.
I call it progress. Getting back to my #1 hobby is good for me.
I'm back on a regular schedule at the SCCA. Tuesdays and Fridays are the norm. Drugs get changed every couple of days because they make some determination based on the blood counts. Some drugs go up, some go down. The total load is still pretty big, but the type of drugs changes. Basically they're trying to lessen the load on the kidneys.
The good news on Friday was that my kidney function numbers are in the normal range. We're staying ahead of potential kidney damage.
The bad news Friday was that if my GVHD symptoms continue, they're going to increase my steroid load to 80mg per day from 40mg/day. Not looking forward to that.
A dietitian's analysis suggests that some of my lower GI troubles are caused by the inability of my small intestine to absorb fats. This puts undigested fats into my large intestine, and the result is, shall I say, "often urgent". And so, I'm supposed to change my diet toward extremely lean proteins and completely away from spicy foods.
Fish, flank steak, extremely lean pork, beans. Yup, nothing quite like Fajitas with no seasoning, no onions, no peppers. Might as well be beef jerky in the Twilight Zone. I had Pho with meatball and rare beef today. I added no mint, bean sprouts, peppers, or cilantro. 30 minutes after my meal, I was DYING. There was an emergency going on under my belt. Code 3. We actually stopped at the local hospital so I could resolve the problem.
On a separate subject, it looks like I'll never get to meet "George" and his son. When I had my Friday appointment, I rounded the corner and there they were, being congratulated by the staff on their departure from the program. Seems "George" has had a successful run at the SCCA. Congratulations to him! (The son was holding the egg when I passed. I made comment about it and gave them both the thumbs-up.)
I learned a lesson about missed opportunities. I shouldn't let that happen again.
Overall, my energy level has been pretty good. I've been doing a few small modification projects on the motorcycle. They exercise the brain, make my body move in untypical ways, and give me some sense of accomplishment. I take the projects slowly, don't lift any heavy weights, and enjoy myself 3-4 hours every day in the garage.
I call it progress. Getting back to my #1 hobby is good for me.
Sunday, October 19, 2008
The complaints are becoming more frequent.
Apparently I don't blog often enough. I'm getting complaints. Well, maybe they're not really complaints, but they're questions. "How are you doing? You haven't blogged in a long time!"
And so, here's the latest.
As of this morning, the load on my kidneys has been significantly reduced. We can rule out the risk of serious kidney damage for the time being.
My energy levels are at a pretty low level. Muscular strength is poor.
Blood pressure is good. Pulse is good.
Upper and lower GI issues are significantly reduced. I'm eating quite a bit and have actually picked up one kilo this week. Unfortunately the weight gain has been limited to the single kilo.
Steroids have been typical. I have peripheral edema (fat ankles and knees). Appetite is good, but taste and smell are still abominable.
I don't sleep well unless the room is over 80F (26.6C). I get muscular cramps in my feet, legs, and hands.
BUT, I'm doing better than I was last week and this gives me hope. At least I'm not going backward. It's not easy, but I'm moving forward.
And so, here's the latest.
As of this morning, the load on my kidneys has been significantly reduced. We can rule out the risk of serious kidney damage for the time being.
My energy levels are at a pretty low level. Muscular strength is poor.
Blood pressure is good. Pulse is good.
Upper and lower GI issues are significantly reduced. I'm eating quite a bit and have actually picked up one kilo this week. Unfortunately the weight gain has been limited to the single kilo.
Steroids have been typical. I have peripheral edema (fat ankles and knees). Appetite is good, but taste and smell are still abominable.
I don't sleep well unless the room is over 80F (26.6C). I get muscular cramps in my feet, legs, and hands.
BUT, I'm doing better than I was last week and this gives me hope. At least I'm not going backward. It's not easy, but I'm moving forward.
Wednesday, October 15, 2008
Change your partner, do-si-do!
For my British fans, the title is a reference to a square dancing instruction.
The SCCA did a blood test on me this morning to track what they feared from Tuesday. The results are quite simple. My kidneys are overloaded. This can lead to kidney failure, dialysis, death. Not cool.
So they've increased my hydration to 1.5 liters/day. Yipee, 6 hours on the pump every day. They've changed me to Gancyclovir instead of Acyclovir (deliverable in another hour long infusion.) They've reduced some of my other drugs by 50% and they've eliminated others completely for the short-term.
Meanwhile, I've been awake for 36 hours because of the steroid changes from Tuesday. I know my body and brain will settle on this new norm, but it's always a little slice of hell when I'm thrown onto high dose 'roids.
Do I feel like crap? You can bet money on it. It's just highly excitable crap.
The SCCA did a blood test on me this morning to track what they feared from Tuesday. The results are quite simple. My kidneys are overloaded. This can lead to kidney failure, dialysis, death. Not cool.
So they've increased my hydration to 1.5 liters/day. Yipee, 6 hours on the pump every day. They've changed me to Gancyclovir instead of Acyclovir (deliverable in another hour long infusion.) They've reduced some of my other drugs by 50% and they've eliminated others completely for the short-term.
Meanwhile, I've been awake for 36 hours because of the steroid changes from Tuesday. I know my body and brain will settle on this new norm, but it's always a little slice of hell when I'm thrown onto high dose 'roids.
Do I feel like crap? You can bet money on it. It's just highly excitable crap.
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