Andre's Obituary Notice

My brother-in-law works for the weekly paper where we had Andre's obituary notice published. It was also mentioned in a roadracing magazine. We are planning a secular memorial service (celebration of his life seems to be the better term) in Dallas, Texas, next Saturday, August 8, a day before my birthday.

To all who sent me condolences, words of support, and their fondest memories of Andre, I want to thank you from the bottom of my heart. Take care of one another.

Hugs,
Ed

4:21 PM

Andre died today in my arms. He was handsome until his very last breath. I've thanked him for the 9 wonderful years we've spent and for making me happy. I love him so much and I'm going to miss him dearly.

ICU Day 28

28 days. Andre has been on the ventilator and in the ICU for 28 days.

Today is probably the lowest I've felt since the initial diagnosis, and my heart is close to breaking. I know I'll catch my bearing again to take better care of Andre and my other responsibilities but the road ahead just feels so much lonelier.

He had an MRI and a lumbar puncture two days ago to check if there is anything wrong with his nervous system that can explain his lack of lucidity and constant agitation. The results all came back negative. The only thing left to do clinically is to continue dialing down the sedative, pain meds and other medications that can cloud his mind, and hope that he comes out of it. And when he does, I'll be the first one he'll see.

ICU Day 24

Roobeedoo, Spiritwoman, and Andre's weekend doc all suggested that playing music might help Andre relax. My initial notion was that silence is best in not agitating him. It seems I'm wrong. I started with classical music to relax Andre but he seems to get excited every time a piece reaches its crescendo. New age seems to be the same. I ended up sticking to ballads and "lite rock"--it looks to be just right.

For this weekend, I had to pushed the doctors to be more aggressive with getting Andre off sedation (i.e., lowering the Versed they're infusing into him). They and the nurses seem to be trigger happy with bolusing him with the sedative every time he "wakes up" fidgeting. I can understand their concern about alleviating the discomfort of their patients but in Andre's case, their usual methods have only resulted in him being more despondent. Additionally, I've noticed that the nurses are quick to give sedation because it makes their job easier. I had to convinced them to give Andre several minutes to calm himself down every time he "wakes up" by gently explaining to him where he is at, what's going on, and what he needs to do. I know this works because I've done this several times. Doing this over the weekend, we've managed to cut his Versed level by a quarter.

Andre made and answered several requests this weekend during those intermittent minutes of cognition. He's able to answer simple questions (e.g., are you in pain, are you hot, are you cold, etc.?) and to give me kisses. He appreciated my trimming of his facial hair and cleaning his ears (he was able to indicate that his ears were itchy). He was also able to signal to us if there is something that's making him uncomfortable (e.g., having to pee, having a bowel movement, the telemetry electrodes and wires digging on his back, etc.). I'm taking all of these as signs of progress. I hope it continues in the right direction.

ICU Day 22

I'm back in Seattle after being in Vancouver since Wednesday afternoon. I've kept up on Andre's progress by calling the nurses at least three times a day, but the day nurse today was quite thoughtful. She called me an hour before the end of her shift to tell me about Andre's progress. He's been breathing on his own (with pressure support from the ventilator) since 9 AM this morning. The respiratory therapist had just put him back on the ventilator at 8:30 PM to rest him for the night. The remaining issue is still the level of his sedation. He's still being kept quiet most of the day. I hope tomorrow they'll go back lowering the sedation while he's breathing on his own.

ICU Day 20 - AM

Andre was completely sedated when I came this morning. I had another "incident" with a physician today, this time with the new attending oncology doc. It seems I'm losing my patience so I need to just calm down just like what I tell Andre.

Completely asleep but with titered down sedation, they put him on pressure support ventilation at about 10:30 AM. He started stirring half-an-hour later and bingo!--he went into his usual agitated state. I don't know what else to do and it seems the pulmonary & critical care team are also running out of ideas. I heard them say, "maybe we can ask psychiatry if they can help". Argh!

And on a different note, I need to go back to Canada to deal with some personal and work-related issues. My work has been very understanding of our current situation but I do feel the need to get more work done since I'm technically not on a leave-of-absence.

ICU Day 18 and 19

Monday and Tuesday are very similar days to a degree.

They started weaning Andre off the sedatives and he responded with differing degrees of agitation. The biggest battle is always when he's waking up from sedation and sleep in the mornings. He would shake his entire body, breathe rapidly, increase his blood pressure and heart rate, have V-tachs and SVTs, and pull off everything that's attached to him--the electrical leads, the feeding tube, and the breathing tube attached to his tracheotomy tube. He managed to remove the breathing tube on Monday morning so the nurse had to put him on restraints which was very difficult to witness. I hope Andre doesn't hate me for allowing that since it was done with the best intentions.

Tuesday was worse than Monday in terms of his agitation. To make matters worse, Andre has a new pulmonary & critical care fellow in-charge of his care. During Andre's most agitated state which occured at about 12:30 PM, she ordered a couple of tests that I didn't agree with--an arterial blood gas and a chest X-ray. The nurse also questioned the orders but only to me. I had a problem with the arterial blood gas because it's a more painful process than a simple venipuncture (they have to go deeper with the needle to reach an artery) which can increase Andre's discomfort. They also haven't done arterial blood gas measurements on him for at least two weeks since they took out his art-line, and his venous gas level has been a good enough estimate of how well his gas exchange is doing. In fact, they've been doing only venous gas level measurements on him everyday for the last two weeks through his central line--a process that is painless and non-invasive. The fellow's defense of the going the arterial route is that she wants to look at his O2 level even though she admitted that she is more interested in the blood CO2 and pH, two numbers that can accurately be derived from the venous blood. I pointed out to her that Andre never had any problems with his O2 level and that the O2 sensor attached to him 24/7 had never indicated any issue with his O2 saturation. My problem with the chest X-ray is that they've just X-rayed Andre in the morning (in fact, he gets this every morning) and doesn't need the extra radiation exposure since the "respiratory event" that she's so worried about is clearly agitation induced and nothing out of the extraordinary. She would have found this out if she had talked to me, listened to the nurse, or have read his charts. They did do the second X-ray of the day and as I expected, it came back with clean results. She also would not listen to the nurse when told that Andre required some bolus of sedatives throughout the day to maintain his calmness.

It took calling the attending doctor to finally let the nurse give Andre more sedation to rest him for tomorrow. They've taken off several sedatives/pain meds for the rest of the day so they can "re-boot" on how they're balancing Andre's pain and agitation with his wakefulness.

The good thing about these last couple of days is that when Andre is calm and semi-awake, he manages to communicate with me and the staff. He kisses me when I ask for them (although at one point, he withheld his kiss when I apparently pissed him off for not understanding the words that he was mouthing and I kept shouting at him to calm down and control his breathing). He's able to tell us if he's in pain and if he wants to be turned. He also understood the news about Ben Spies, Sarah Palin, and Michael Jackson (I don't know though if he'll remember them). The funniest thing that Andre did was when he gave a sarcastic smile to his nurse who gave him high praises for being able to dangle his feet off his bed during physical therapy. It was classic Andre.

While you were sleeping...

I want to update Andre on "newsworthy" events he missed while he was recovering from his surgery on June 18.

Here is my list so far:

• our 9th year Anniversary (July 3rd)
• our friends' (Pam & Suzie) move to the Bay Area
  
• US Independence Day (July 4th)
• Canada Day (July 1st)
  
• celebrity deaths: Michael Jackson, Farrah Fawcett, Billy Mays, Steve McNair
• Nadal not defending his Wimbledon title due to injury; Federer winning his 6th Wimbledon championship
• Gov. Sanford admitting to his affair with an Argentine woman
• Sarah Palin abdicating as governor of Alaska
• Coup d'etat in Honduras

I'm sure there is some motorcycle racing news I'm missing. If someone can fill me on on that one, I'd appreciate it.

ICU Day 16 and 17

There isn't much to report on Andre from yesterday, July 4th. His medical team had started tapering off his sedation. They did a CT scan of his chest to look at the infection in his lungs. And they started him on what they call "pressure support" ventilation during daytime. At night, he back on full ventilator support.

Today, the CT scan result shows nothing significant. There is no spreading or enlarging of the remaining small nodules in his lungs. His white blood counts have also improved a lot so that should help with fighting the infections. He's awake right now, and able to nod and shake his head to respond to questions, he mouths words and tries to get up--all good signs.

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.

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.

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.

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.

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".

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".

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:

1. 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.
   
2. His kidney function continues to improve.

The other kind of news:

1. 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).
2. 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.
3. 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.
4. His white blood count remains steady but low.
   

I hope the afternoon will be less "exciting".

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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

"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.

Final answer

The surgeons and I made a final decision last night. Surgery on Monday.

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.

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).

Crazy monkey

I absolutely love this thing. It's part of the birthday gift package for Andre from two of our lovely friends.

Ed

Andre video

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

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.

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

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.

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.

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.

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.

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.

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?

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.

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.

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.

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.

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.

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!

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.

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

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.

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.

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.

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.

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?)

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.

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.

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.

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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?

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.

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.

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.

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.

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.

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?

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.

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.