I got my stem cells today. I guess it's supposed to be my new birthday.
The whole process was severely underwhelming. Hydrate for 2 hours, then hook up, infuse for 36 minutes, disconnect. Get 2 more hours of hydration.
Anti-nausea pills make a guy sleepy. I tried to eat after Ed came home. I got about 3 bites down and fell asleep typing this blog. Gonna go back to bed.
Everything is OK.
Friday, November 30, 2007
Thursday, November 29, 2007
36 hours in
I haven't eaten much. I've limited myself to fluids, canned meal substitutes (Ensure type products), and water. The idea of real food turns me green.
I had a canned meal substitute, a small container of apple sauce, a bottled water, and one bite of a pig-in-a-blanket for dinner. It took me 3 hours to eat it.
At about 9 pm I went to the bathroom and felt a wave of nausea...... with violent results.
The odd thing was that I'd felt just fine until I relaxed a couple of muscles to pee, then all hell broke loose. Sudden nausea with instantaneous projectile vomiting. It looked like a horror movie. I was fine (and quite empty) about a minute later.
They tell me I shouldn't be this queazy yet. They say I shouldn't be this bad until about the 5th or 6th day. They also tell me they'll have to hospitalize me if I can't get any nutrition.
BTW - I'm taking anti-barf pills.
I had a canned meal substitute, a small container of apple sauce, a bottled water, and one bite of a pig-in-a-blanket for dinner. It took me 3 hours to eat it.
At about 9 pm I went to the bathroom and felt a wave of nausea...... with violent results.
The odd thing was that I'd felt just fine until I relaxed a couple of muscles to pee, then all hell broke loose. Sudden nausea with instantaneous projectile vomiting. It looked like a horror movie. I was fine (and quite empty) about a minute later.
They tell me I shouldn't be this queazy yet. They say I shouldn't be this bad until about the 5th or 6th day. They also tell me they'll have to hospitalize me if I can't get any nutrition.
BTW - I'm taking anti-barf pills.
24 hours in
I feel like warmed-over manure. I'm operating under my own power but doubt I'll be able to do so for very much longer. I don't think the giant hand has swung the hammer yet. I'm afraid he's just pinching too hard as he steadies me for the giant whack.
I have to be at the SCCA in an hour and a half.
I have to be at the SCCA in an hour and a half.
Wednesday, November 28, 2007
8 hours in
Tired, feeling like I'm coming down with something. (Not that I am, but I feel like it.)
Drinking water - just plain water. Imagine that!
The anti-barf pills seem to be working. Going back to bed.
Drinking water - just plain water. Imagine that!
The anti-barf pills seem to be working. Going back to bed.
4 hours in
I'm 4 hours in. I just had lunch and it's not settling perfectly. I have pills for nausea that are supposed to be taken at 12 and 24 hours post poison.
Still pretty stoned from the ativan. I was having a good nap until Verizon Wireless decided to text me to let me know my bill was available online.
I think today is a lost day for a lost boy. Maybe I'll try to read.
Still pretty stoned from the ativan. I was having a good nap until Verizon Wireless decided to text me to let me know my bill was available online.
I think today is a lost day for a lost boy. Maybe I'll try to read.
The point of no return.
I've past the point of no return. The poison is in me and there's no way to reverse it. The deed is done.
Bone marrow death started about an hour ago.
I'm so stoned on ativan I can hardly type. Gonna take a nap. Talk to you later.
Bone marrow death started about an hour ago.
I'm so stoned on ativan I can hardly type. Gonna take a nap. Talk to you later.
Tuesday, November 27, 2007
Petrified.
Batman is scared. Very scared.
At 8:00 am tomorrow, a giant hand will hold me against the mud of an unknown swamp. With one giant blow, he'll hammer me into the ooze below my feet. Then I'll be hammered and hammered again despite the fact that my head is already below the surface.
Hopefully the giant hand will grow tired of this in a few days and let me eke my way out of the ooze.
Ed and I have talked about this: I'm not afraid of death, but I'm scared as hell of suffering on my way there. Tomorrow starts the suffering with the intent of avoiding death.
The truth is that I really don't want to do this. Conversely, I really want to be cured (or at least asymptomatic for some time), and we hope this will have some beneficial effects. I'll endure the suffering in pursuit of a greater goal. I just wish there was another way.
For you medi-technophiles out there, I get a massive dose of Melphalan tomorrow. It will cause ALL of my bone marrow to die. I'll be neutropenic (no immune system) for much longer than I was during a previous dose. It will cause side effects that put 90+% of patients in the hospital for 14 to 21 days. I'll have severe inflamation of mucous membranes. (Figure out where those are, and imagine stunning inflammations. Yup, eyelids and everything from your lips to your anus.) Unimaginable inflammation.
I'll have such poor blood numbers that I'll probably get several transfusions. We already have a couple of them planned.
I'll be so weak they'll worry about my ability to dial 911 or call Ed. As a result, they want Ed by my side 24/7. At the same time, they want me to come see them once a day, every day for 30+ days. Maybe the hospital would be a blessing.
It gets worse, but I won't bother with that here.
I'm scared. I really am.
In the meantime, I'll blog until I can't blog any more. Heck, it's time for more Christmas card pics!
At 8:00 am tomorrow, a giant hand will hold me against the mud of an unknown swamp. With one giant blow, he'll hammer me into the ooze below my feet. Then I'll be hammered and hammered again despite the fact that my head is already below the surface.
Hopefully the giant hand will grow tired of this in a few days and let me eke my way out of the ooze.
Ed and I have talked about this: I'm not afraid of death, but I'm scared as hell of suffering on my way there. Tomorrow starts the suffering with the intent of avoiding death.
The truth is that I really don't want to do this. Conversely, I really want to be cured (or at least asymptomatic for some time), and we hope this will have some beneficial effects. I'll endure the suffering in pursuit of a greater goal. I just wish there was another way.
For you medi-technophiles out there, I get a massive dose of Melphalan tomorrow. It will cause ALL of my bone marrow to die. I'll be neutropenic (no immune system) for much longer than I was during a previous dose. It will cause side effects that put 90+% of patients in the hospital for 14 to 21 days. I'll have severe inflamation of mucous membranes. (Figure out where those are, and imagine stunning inflammations. Yup, eyelids and everything from your lips to your anus.) Unimaginable inflammation.
I'll have such poor blood numbers that I'll probably get several transfusions. We already have a couple of them planned.
I'll be so weak they'll worry about my ability to dial 911 or call Ed. As a result, they want Ed by my side 24/7. At the same time, they want me to come see them once a day, every day for 30+ days. Maybe the hospital would be a blessing.
It gets worse, but I won't bother with that here.
I'm scared. I really am.
In the meantime, I'll blog until I can't blog any more. Heck, it's time for more Christmas card pics!
Monday, November 26, 2007
Your daily fix.
Apparently some people get tweaked when I don't post something for a day or two. Either they're really concerned about me or they need a daily installment of their favorite soap opera, "The Days of our Cells". (Seriously, I appreciate that some of you worry if you don't hear anything from me.)
Odd segue begins here:
I was going to use the title "Make no bones about it" as the soap opera name in the sentence above. Then I got to thinking about what the expression really means.
Well, it apparently means to: 1) state all the facts and leave no doubt. 2) have no hesitation or scruples in speaking about or dealing with some matter, no matter how awkward or unpleasant.
Now, I was originally going to use the expression because of multiple myeloma's severe and debilitating effect on the skeleton. It was going to be my little play on words for the day. Turns out it's a bit more than that. Call it my big play on words for the day.
Are you starting to see a peculiar parallel between multiple myeloma and my method of coping with it in this blog?
Suddenly I feel empowered, as if I own "Make no bones about it". I mean, if MM is destroying my bones, and I'm not making any bones about it destroying my bones....... Well, you understand.
End of odd segue. Resumption of normal thought processes:
The job interview turned out to be a waste of time. I was completely candid with them regarding my health and situation, as well as my expectations for recovery and what I could do for them (and when). They opted to skip the opportunity to hire someone they considered a rare find. In any case, it was good to be reminded I have marketable skills, that I have some commercial value, and that my skillset is unique.
I've been feeling better than I've felt in 18 months. Life has probably been better than this, but I've forgotten when. Of course, this makes it the perfect time for them to hammer me into the bottom of the swamp (which will happen this Wednesday, November 28, 2007).
I spent the day taking care of some minor issues at the SCCA, yelling at some hospital accounting departments where the people are polite but clueless, ordering drugs and medical supplies, and alternating between slight mania and abject fear of the next two weeks.
In 15 minutes I'm going to sneak off to our local Thai restaurant with Ed. They make some incredible fried chicken wings. The Colonel and Popeye could learn a thing or two from the Thais. (The place is called "Thai One On". Yeah, hokey.)
Odd segue begins here:
I was going to use the title "Make no bones about it" as the soap opera name in the sentence above. Then I got to thinking about what the expression really means.
Well, it apparently means to: 1) state all the facts and leave no doubt. 2) have no hesitation or scruples in speaking about or dealing with some matter, no matter how awkward or unpleasant.
Now, I was originally going to use the expression because of multiple myeloma's severe and debilitating effect on the skeleton. It was going to be my little play on words for the day. Turns out it's a bit more than that. Call it my big play on words for the day.
Are you starting to see a peculiar parallel between multiple myeloma and my method of coping with it in this blog?
Suddenly I feel empowered, as if I own "Make no bones about it". I mean, if MM is destroying my bones, and I'm not making any bones about it destroying my bones....... Well, you understand.
End of odd segue. Resumption of normal thought processes:
The job interview turned out to be a waste of time. I was completely candid with them regarding my health and situation, as well as my expectations for recovery and what I could do for them (and when). They opted to skip the opportunity to hire someone they considered a rare find. In any case, it was good to be reminded I have marketable skills, that I have some commercial value, and that my skillset is unique.
I've been feeling better than I've felt in 18 months. Life has probably been better than this, but I've forgotten when. Of course, this makes it the perfect time for them to hammer me into the bottom of the swamp (which will happen this Wednesday, November 28, 2007).
I spent the day taking care of some minor issues at the SCCA, yelling at some hospital accounting departments where the people are polite but clueless, ordering drugs and medical supplies, and alternating between slight mania and abject fear of the next two weeks.
In 15 minutes I'm going to sneak off to our local Thai restaurant with Ed. They make some incredible fried chicken wings. The Colonel and Popeye could learn a thing or two from the Thais. (The place is called "Thai One On". Yeah, hokey.)
Saturday, November 24, 2007
Oh, by the way.....
I sorta forgot to talk about the bone marrow biopsy that happened this past Wednesday. Remember, that's the old "let's put a couple of holes in your hip bones and suck out the juice" pleasantry I'm so fond of.
Well, it went EXACTLY as I wanted it to go. I went in. I took drugs. I walked out with Ed and we went home.
This is how bone marrow biopsies should happen. I'll do it again.
Oh, speaking of drugs. The docs have me on Fentanyl for pain nowdays. What a wonderful drug. No high and no pain. The perfect combination. I actually feel like a person's supposed to feel. No buzz and no misery.
It's really amazing how much pain I endured every day. It's only recognizable now that it's gone. I had grown so used-to the background pain that it became my new norm. I'm SO glad it's gone.
I've actually been waking up in a good mood every morning since starting the Fentanyl. (So good, in fact, that it's been irritating to Ed. He likes to wake up slowly and I've been a bit like Little Mary Sunshine.)
Well, it went EXACTLY as I wanted it to go. I went in. I took drugs. I walked out with Ed and we went home.
This is how bone marrow biopsies should happen. I'll do it again.
Oh, speaking of drugs. The docs have me on Fentanyl for pain nowdays. What a wonderful drug. No high and no pain. The perfect combination. I actually feel like a person's supposed to feel. No buzz and no misery.
It's really amazing how much pain I endured every day. It's only recognizable now that it's gone. I had grown so used-to the background pain that it became my new norm. I'm SO glad it's gone.
I've actually been waking up in a good mood every morning since starting the Fentanyl. (So good, in fact, that it's been irritating to Ed. He likes to wake up slowly and I've been a bit like Little Mary Sunshine.)
24 hour wee-wee
I have to collect my urine for 24 hours again. Take my word for it, the concept thrills you as much as it thrills me.
I was supposed to start yesterday and finish this morning, but I forgot. (Maybe it was just a mental block.) I guess I need to reschedule the blood test that's supposed to go along with it at "adventure's end".
It's a wonderful little drill:
1) Remove lovely brown 1/2 gallon container from fridge.
2) Open said container.
3) Dangle my little friend into the cold container.
4) Pee.
5) Shake my little friend against the sides of the cold container.
6) Remove my little friend from (freshly warmed / stinky) container.
7) Shake my little friend again.
8) Put my little friend away where he belongs and make sure he's comfortable.
9) Put the top on the stinky-tainer.
10) Put the stinky-tainer back into the fridge.
11) Repeat 1-10 as necessary until 24 hours have passed, then
12) Disguise stinky-tainer as your bag lunch to protect innocent onlookers.
13) Carry stinky-tainer across town. (If public transportation is being used, sit next to an obviously homeless person. This will make most people think the smell is coming from him.)
14) Give to an eager looking lab technician.
15) Smile pleasantly, then turn and run like hell.
16) Go get a blood test.
17) Try not to look at the urine collection technician as you leave the building.
I was supposed to start yesterday and finish this morning, but I forgot. (Maybe it was just a mental block.) I guess I need to reschedule the blood test that's supposed to go along with it at "adventure's end".
It's a wonderful little drill:
1) Remove lovely brown 1/2 gallon container from fridge.
2) Open said container.
3) Dangle my little friend into the cold container.
4) Pee.
5) Shake my little friend against the sides of the cold container.
6) Remove my little friend from (freshly warmed / stinky) container.
7) Shake my little friend again.
8) Put my little friend away where he belongs and make sure he's comfortable.
9) Put the top on the stinky-tainer.
10) Put the stinky-tainer back into the fridge.
11) Repeat 1-10 as necessary until 24 hours have passed, then
12) Disguise stinky-tainer as your bag lunch to protect innocent onlookers.
13) Carry stinky-tainer across town. (If public transportation is being used, sit next to an obviously homeless person. This will make most people think the smell is coming from him.)
14) Give to an eager looking lab technician.
15) Smile pleasantly, then turn and run like hell.
16) Go get a blood test.
17) Try not to look at the urine collection technician as you leave the building.
Thursday, November 22, 2007
Thanksgiving day.
For those of you who are non-US readers, today is Thanksgiving Day. It's a holiday we celebrate in honor of the bounty provided us.
Usually, this holiday is celebrated with family and food. Most times it involves overindulgence, football on TV, and tall stories from distant uncles. This would be considered a "traditional" Thanksgiving.
In our house, since Ed's not a US citizen, and since I really don't care much about family, Thanksgiving is sometimes spent with friends and sometimes spent alone. This year, we were worse than usual.
I was in Vancouver, Canada being interviewed for a job. Ed played video games at home alone. After I came home, I microwaved some chicken and made some instant mashed potatoes. Some people will think this is horrible, but I think they're missing the point.
We're thankful we have the flexibility to do what we feel like doing. We're thankful we love and trust one another enough to change directions on short notice without disappointment. We're thankful that a microwaved dinner together is worth more than a gourmet meal apart. We're thankful that we're slaying our dragon together. We're thankful we found one another at the perfect place and time. We're thankful it works.
We hope each of you is as lucky as we.
Usually, this holiday is celebrated with family and food. Most times it involves overindulgence, football on TV, and tall stories from distant uncles. This would be considered a "traditional" Thanksgiving.
In our house, since Ed's not a US citizen, and since I really don't care much about family, Thanksgiving is sometimes spent with friends and sometimes spent alone. This year, we were worse than usual.
I was in Vancouver, Canada being interviewed for a job. Ed played video games at home alone. After I came home, I microwaved some chicken and made some instant mashed potatoes. Some people will think this is horrible, but I think they're missing the point.
We're thankful we have the flexibility to do what we feel like doing. We're thankful we love and trust one another enough to change directions on short notice without disappointment. We're thankful that a microwaved dinner together is worth more than a gourmet meal apart. We're thankful that we're slaying our dragon together. We're thankful we found one another at the perfect place and time. We're thankful it works.
We hope each of you is as lucky as we.
Tuesday, November 20, 2007
The daily news
Ed and I went to the scheduled conference today. Unfortunately the blood test area was SO backed up we waited an hour and two minutes from check-in time to completion, so we were a bit late for conference. We got our calendar/schedule and we got the doc to agree to allow my brother to be HLA typed. (Big step.)
Tomorrow is another bone marrow sample/biopsy. I'm gonna be knocked out completely for this one. I don't really care if it makes me seem like a wimp...... I don't wanna be here for this one......
The current schedule has me getting Melphalan (bone marrow poison) on the 28th and my transplant on the 30th. Engraftment (acceptance and regrowth of my stem cells) should occur within 14 days (24 at the most). Yeah, that would stretch right up 'til Christmas eve.
(For those "in the know", some Canadians are pestering me to come visit them. I'm actually scheduled to go up there on Thanksgiving Thursday.)
Tomorrow is another bone marrow sample/biopsy. I'm gonna be knocked out completely for this one. I don't really care if it makes me seem like a wimp...... I don't wanna be here for this one......
The current schedule has me getting Melphalan (bone marrow poison) on the 28th and my transplant on the 30th. Engraftment (acceptance and regrowth of my stem cells) should occur within 14 days (24 at the most). Yeah, that would stretch right up 'til Christmas eve.
(For those "in the know", some Canadians are pestering me to come visit them. I'm actually scheduled to go up there on Thanksgiving Thursday.)
Monday, November 19, 2007
Last night and today.
My gout flared up yesterday. I woke up with joint pain in my left hip, both kness, and both ankles. I was virtually crippled by 9 pm.
This morning I woke up at ~5 am because I had to pee. I found that I could walk gingerly to the bathroom, but the pain never let me get back to sleep. I got up and did my regimen and headed off to the SCCA at 6:45 for my 7:30 blood test.
I got a gammaglobulin infusion and a pamidronate infusion today. I left the SCCA at 2:45. No side effects, no serious reactions. One of the meds they gave me as prophylaxis against an adverse reaction to the gammaglobulin was successful in treating my gout. Yippee.
They gave me a pain script for Fentanyl in a patch. The patch lasts 3 days. We'll see how well it works.
This morning I woke up at ~5 am because I had to pee. I found that I could walk gingerly to the bathroom, but the pain never let me get back to sleep. I got up and did my regimen and headed off to the SCCA at 6:45 for my 7:30 blood test.
I got a gammaglobulin infusion and a pamidronate infusion today. I left the SCCA at 2:45. No side effects, no serious reactions. One of the meds they gave me as prophylaxis against an adverse reaction to the gammaglobulin was successful in treating my gout. Yippee.
They gave me a pain script for Fentanyl in a patch. The patch lasts 3 days. We'll see how well it works.
Sunday, November 18, 2007
The daily grind
I'm doing this simply for documentation. It might interest some of you to know what the basic overhead is for me every day.
1) Get out of bed.
2) Eat the "breakfast of champions" (a small handful of pills).
3) Start the shower
4) Remove my 'required' T-shirt. (keeps the Hickman catheter from being pulled out)
5) Remove the dressing over my Hickman catheter.
6) Cover my Hickman with a "Showerguard" plastic sheet (supposedly keeps the Hickman dry)
7) Shower, shave, and brush my teeth with 2 different types of toothpaste and 3 different tooth brushes. (really!)
8) Turn off the shower and dry off with a new towel every day (required).
9) Remove the "Showerguard" and dry the area under it. (not really waterproof)
10) Open a pre-packaged dressing kit.
11) Sterilize the area around the Hickman and under the Showerguard location starting from the Hickman entry point and working outward.
12) Place two gauze pads on the Hickman entry point (one under and one over the line).
13) Tape these gauze pads to my chest using alternating tape patterns so my skin doesn't disintigrate over time.
14) Remove my infusion (hydration) bag from the refrigerator.
15) Warm the bag under hot running water for 10-15 minutes.
16) Program the infusion pump.
17) Place the warmed infusion bag in the backpack.
18) Install a pre-packaged tubing kit on the hydration bag.
19) Prime the line(s) of the tubing kit (including clearing bubbles from the lines).
20) Put a new battery in the infusion pump.
21) Program the infusion pump.
22) Connect the primed tubing to my Hickman catheter after cleaning the tip with alcohol.
23) Connect the pump body of the tubing kit to the pump.
24) Finish programming the pump.
25) Check everything and start the pump.
26) Carry "Wheezy" around for 4 hours.
27) Undo the tubing (disconnect).
28) Clear both lines of the Hickman catheter with a saline flush followed by a heparin flush.
29) Resume my day.
I've been asked why I don't combine #7 and #15 by warming the bag in the shower. The simple answer is that the ports of the bag need to stay clean and dry. It's not practical in the shower.
1) Get out of bed.
2) Eat the "breakfast of champions" (a small handful of pills).
3) Start the shower
4) Remove my 'required' T-shirt. (keeps the Hickman catheter from being pulled out)
5) Remove the dressing over my Hickman catheter.
6) Cover my Hickman with a "Showerguard" plastic sheet (supposedly keeps the Hickman dry)
7) Shower, shave, and brush my teeth with 2 different types of toothpaste and 3 different tooth brushes. (really!)
8) Turn off the shower and dry off with a new towel every day (required).
9) Remove the "Showerguard" and dry the area under it. (not really waterproof)
10) Open a pre-packaged dressing kit.
11) Sterilize the area around the Hickman and under the Showerguard location starting from the Hickman entry point and working outward.
12) Place two gauze pads on the Hickman entry point (one under and one over the line).
13) Tape these gauze pads to my chest using alternating tape patterns so my skin doesn't disintigrate over time.
14) Remove my infusion (hydration) bag from the refrigerator.
15) Warm the bag under hot running water for 10-15 minutes.
16) Program the infusion pump.
17) Place the warmed infusion bag in the backpack.
18) Install a pre-packaged tubing kit on the hydration bag.
19) Prime the line(s) of the tubing kit (including clearing bubbles from the lines).
20) Put a new battery in the infusion pump.
21) Program the infusion pump.
22) Connect the primed tubing to my Hickman catheter after cleaning the tip with alcohol.
23) Connect the pump body of the tubing kit to the pump.
24) Finish programming the pump.
25) Check everything and start the pump.
26) Carry "Wheezy" around for 4 hours.
27) Undo the tubing (disconnect).
28) Clear both lines of the Hickman catheter with a saline flush followed by a heparin flush.
29) Resume my day.
I've been asked why I don't combine #7 and #15 by warming the bag in the shower. The simple answer is that the ports of the bag need to stay clean and dry. It's not practical in the shower.
Return of the prodigal.....
Ok, I'm back. I went to Dallas for a few days to get some things out of the way. I spent a bit of time with my brother and his hubby, some with my motorcycle posse at the TSBA, some with TSBA members who are closer than average, and had one dinner with my mom, sister, and niece. The whole trip was quite nice. Only about 3 hours of it sucked, so I consider it a 'good thing'. I slew some dragons and got some badly needed rest in the process.
Ed and I gave a pretty nice digital camera package to our niece. I hope she puts it to good use.
Anyway, I'm returning my seatback to its full upright position. My tray table is locked.
Ed and I gave a pretty nice digital camera package to our niece. I hope she puts it to good use.
Anyway, I'm returning my seatback to its full upright position. My tray table is locked.
Friday, November 09, 2007
I'm unable to take your call at this time.
Well, I'm done for this week. Nothing going on. The SCCA has me off next week completely. Until November 19, you won't be reading anything from me unless something odd happens.
"I'm sorry. I'm unable to take your phone call at this time. Please leave a message and I'll get back to you as soon as I can."
"I'm sorry. I'm unable to take your phone call at this time. Please leave a message and I'll get back to you as soon as I can."
Thursday, November 08, 2007
New birthday.
It's common for transplant patients to label their transplant day as their "second birthday". Apparently mine will be November 29th. This caused me to have a funny thought.
What if the astrological sign for my new birthday (Sagittarius) isn't compatible with my regular birthday (Gemini)?
Don't misunderstand. I'm not a follower of astrology. I was just curious in a "wouldn't it be funny" sort of way.
Well, it turns out that my Sagittarius and my Gemini sides will get along just fine as long as we don't become emotionally involved. (Yeah, there are a lot of different ways to consider that.)
Truth is, I'm not schizophrenic enough to worry about it.
What if the astrological sign for my new birthday (Sagittarius) isn't compatible with my regular birthday (Gemini)?
Don't misunderstand. I'm not a follower of astrology. I was just curious in a "wouldn't it be funny" sort of way.
Well, it turns out that my Sagittarius and my Gemini sides will get along just fine as long as we don't become emotionally involved. (Yeah, there are a lot of different ways to consider that.)
Truth is, I'm not schizophrenic enough to worry about it.
Vacation!
I went to the SCCA today to get my usual blood test. I also made plans with them to go on vacation. I've had this miserable "job" for about 14 months without a day off, so I'm gonna spend 4 days back in Dallas next week.
There are a couple of tests they wanted, but they'll wait until I get back.
There are a couple of tests they wanted, but they'll wait until I get back.
Wednesday, November 07, 2007
The plan?
I touched base with my team this morning after my blood draw. It seems that the schedule looks like I'll be getting melphalan on Nov 27 and will get the transplant on Nov 29.
I have a consultation on Friday, so I'll keep you all posted.
I have a consultation on Friday, so I'll keep you all posted.
Tuesday, November 06, 2007
A productive day.
I started my day at the SCCA at 9:00 am with a blood test. It was followed by a platelet transfusion and a "G" shot.
Then came the surprise. I was told at 11:30 that my noon apheresis (harvest) had been cancelled. I went NUTS! WTF? So I went to my "team" and asked a few questions. Turned out that somebody knocked me off the list by accident, and that I was back on schedule. I'm glad I raised a little hell. What do passive patients do?
Anyway, apheresis happened as it was supposed to. It was followed by 2 units of blood (again), making something like 9 units of blood since this thing started.
I got finished at 7:00 pm this evening. Ten hours of being a patient patient. (Well, not always patient, but always a patient.)
So do you wanna hear the good news? The SCCA apparently has two different sizes of apheresis collections. One is obviously smaller than the other. They did the little one on me today so they could do another little one tomorrow. See, my hematocrit was 29 and they require a 30, so they were gonna fudge a little and do it in two sittings. They knew my late-day blood transfusions would get the number over 30.
Anyway, they wanted to do the apheresis in two parts because they need to collect at least 10 million stem cells and it usually takes two 'smalls' to get 10 million.
One side note: My doc suggested that the melphalan treatment I got before the "G" shots might reduce the number of stem cells to 6 million (maybe). She just wanted me to be prepared for only collecting enough cells for one auto transplant.
Well, the end of the day turned out to be quite good. Tests showed I produced (and they collected) 10.6 million cells from a 'small' apheresis.
Yes, that's a stunning result. No more apheresis. No more "G" injections. I have a blood test tomorrow at 9 am. It's the only thing on my schedule.
I'm relieved.
Then came the surprise. I was told at 11:30 that my noon apheresis (harvest) had been cancelled. I went NUTS! WTF? So I went to my "team" and asked a few questions. Turned out that somebody knocked me off the list by accident, and that I was back on schedule. I'm glad I raised a little hell. What do passive patients do?
Anyway, apheresis happened as it was supposed to. It was followed by 2 units of blood (again), making something like 9 units of blood since this thing started.
I got finished at 7:00 pm this evening. Ten hours of being a patient patient. (Well, not always patient, but always a patient.)
So do you wanna hear the good news? The SCCA apparently has two different sizes of apheresis collections. One is obviously smaller than the other. They did the little one on me today so they could do another little one tomorrow. See, my hematocrit was 29 and they require a 30, so they were gonna fudge a little and do it in two sittings. They knew my late-day blood transfusions would get the number over 30.
Anyway, they wanted to do the apheresis in two parts because they need to collect at least 10 million stem cells and it usually takes two 'smalls' to get 10 million.
One side note: My doc suggested that the melphalan treatment I got before the "G" shots might reduce the number of stem cells to 6 million (maybe). She just wanted me to be prepared for only collecting enough cells for one auto transplant.
Well, the end of the day turned out to be quite good. Tests showed I produced (and they collected) 10.6 million cells from a 'small' apheresis.
Yes, that's a stunning result. No more apheresis. No more "G" injections. I have a blood test tomorrow at 9 am. It's the only thing on my schedule.
I'm relieved.
Monday, November 05, 2007
THE call.
I just got THE call. Turns out my CD34 count is 35 and they're only looking for 10, so I get harvested tomorrow at noon!
I'm pretty emotional right now.
I'm pretty emotional right now.
A call.
Well, I got a call, but it wasn't THE call. To be honest, this call sorta pissed me off.
It seems they won't do a harvest unless my platelets are above 50. Yesterday they were 28. Today they're 18. Why the hell didn't they schedule a platelet transfusion for today along with the RBCs?
So, tomorrow at 9:30, I get platelets and another pair of "G" shots.
Whoop-de-freaking-do.
Do I sound anxious?
It seems they won't do a harvest unless my platelets are above 50. Yesterday they were 28. Today they're 18. Why the hell didn't they schedule a platelet transfusion for today along with the RBCs?
So, tomorrow at 9:30, I get platelets and another pair of "G" shots.
Whoop-de-freaking-do.
Do I sound anxious?
Another Monday rolls around.
The SCCA started at 10:45 today - blood tests including a bunch of odd ones like a CD34 test and a test to see if myeloma cells are coursing through my bloodstream.
Then there was the usual "G" shots and vitals, with the usual questions. You know, "Have you died within the last 24 hours?", "Has there been any unusual bleeding since we thinned your blood so far that it looks like water?", and "Do you feel dizzy when you stand up?".
Now, these may seem like inane questions, but I dilligently answer every one. So in case you're curious, here are my responses.
"Not that I'm aware of. Is there something you need to tell me?"
"Just the bloody eye and the Petechia. Besides that there have been no gushers."
"Not any more than I am the rest of the time."
Nobody ever asks how dizzy I am the rest of the time.
Anyway, I'm back at home, hooked up to my little black girlfriend "Wheezy" for a nice liter of fluids. Waiting for the phone call that drops another shoe. Will it be the right shoe, or the wrong shoe?
I'll let you know.
Then there was the usual "G" shots and vitals, with the usual questions. You know, "Have you died within the last 24 hours?", "Has there been any unusual bleeding since we thinned your blood so far that it looks like water?", and "Do you feel dizzy when you stand up?".
Now, these may seem like inane questions, but I dilligently answer every one. So in case you're curious, here are my responses.
"Not that I'm aware of. Is there something you need to tell me?"
"Just the bloody eye and the Petechia. Besides that there have been no gushers."
"Not any more than I am the rest of the time."
Nobody ever asks how dizzy I am the rest of the time.
Anyway, I'm back at home, hooked up to my little black girlfriend "Wheezy" for a nice liter of fluids. Waiting for the phone call that drops another shoe. Will it be the right shoe, or the wrong shoe?
I'll let you know.
Sunday, November 04, 2007
Transfusion on Monday
I just went to the SCCA for a late-afternoon blood typing. Now I know I get 1 unit of blood tomorrow at noon. Gotta bring something to do. 4 hours in the chair.
Return engagement
Gotta go back to the SCCA today. They need to type my blood. Even though it's been done before, there's some sort of regulation that the typing has to be done within 3 days of a transfusion.
Home again, home again, jiggity-jig
Back from the SCCA again. Good news!
WBC count was 0.4 yesterday and it's 1.37 today! Basically this means I'm coming out of neutropenia rapidly. The nurse (who spoke with the oncologist) said they'd be looking at tomorrow's numbers and might be calling me in the afternoon for a Tuesday harvest!
I also bumped into the oncologist in the hall and she confirmed this, but also advised they'd be ensuring that there were no "bad cells" in the blood. I take this to mean that there should be no circulating myeloma cells in the blood, as there have been in the past.
So, I might get my callback tomorrow! Cool!
WBC count was 0.4 yesterday and it's 1.37 today! Basically this means I'm coming out of neutropenia rapidly. The nurse (who spoke with the oncologist) said they'd be looking at tomorrow's numbers and might be calling me in the afternoon for a Tuesday harvest!
I also bumped into the oncologist in the hall and she confirmed this, but also advised they'd be ensuring that there were no "bad cells" in the blood. I take this to mean that there should be no circulating myeloma cells in the blood, as there have been in the past.
So, I might get my callback tomorrow! Cool!
Petechia
Yeah, it's 1:00 am and I've been up watching TV. Bad boy.
But here's the news. I took off my pants and shirt with the lights on. I have petechia (pronounced pet eek ee ah) all over my body.
What are they? They're tiny little blood vessel hemorrhages everywhere on my skin (primarily on the legs due to the increased pressure of gravity). They're caused by my low blood counts. Basically, if there aren't enough red blood cells in your blood, you spontaneously bleed. Add the petechia to the bloody eye, and my counts are probably about as low as they'll let me go without a transfusion. We'll see tomorrow at my appointment at 8:30 am.
Will advise.
But here's the news. I took off my pants and shirt with the lights on. I have petechia (pronounced pet eek ee ah) all over my body.
What are they? They're tiny little blood vessel hemorrhages everywhere on my skin (primarily on the legs due to the increased pressure of gravity). They're caused by my low blood counts. Basically, if there aren't enough red blood cells in your blood, you spontaneously bleed. Add the petechia to the bloody eye, and my counts are probably about as low as they'll let me go without a transfusion. We'll see tomorrow at my appointment at 8:30 am.
Will advise.
Saturday, November 03, 2007
Saturday
The usual blood tests and "G" shots.
Most of the numbers haven't changed significantly, but the WBC count dropped about 25% meaning that my marrow hasn't started to grow back yet. Basically this means I'm not gonna get the call for harvest any time really soon.
Most of the numbers haven't changed significantly, but the WBC count dropped about 25% meaning that my marrow hasn't started to grow back yet. Basically this means I'm not gonna get the call for harvest any time really soon.
Friday, November 02, 2007
New schedule
Back again. Blood numbers remain neutropenic. Hematocrit is 29 and that's below their minimum level for harvest. Thus, we suspect that I'll be getting another transfusion immediately before harvest.
The schedule has me on "G" every day until next Thursday. However, I've been advised that when the numbers are right, they'll just pull the trigger and schedule me for harvest the next day.
So, I could stay on "G" until Thursday or I could get my "summons" tomorrow. Who knows!
(I've been warned that the transfusion and the harvest can take up to 10 hours. I'm supposed to bring 'something to do'.)
The schedule has me on "G" every day until next Thursday. However, I've been advised that when the numbers are right, they'll just pull the trigger and schedule me for harvest the next day.
So, I could stay on "G" until Thursday or I could get my "summons" tomorrow. Who knows!
(I've been warned that the transfusion and the harvest can take up to 10 hours. I'm supposed to bring 'something to do'.)
Thursday, November 01, 2007
November 1 report
Just got back from the SCCA again. Blood draw, blood counts, "G" injections. Pretty normal day. Same routine tomorrow. Counts are continuing downward. Immune system is even less than yesterday.
They're busting my hump about my fluid intake. I get to keep records now.
They're busting my hump about my fluid intake. I get to keep records now.
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