Saturday, June 11, 2011

Run over by a convoy of trucks

A quick update: I was admitted to Johns Hopkins last Monday (6/6) and discharged today. Tons of antibiotics, etc but the care was the best I've ever had. I am exhausted and need to go to bed now, more soon.

Friday, June 3, 2011

scraping bottom

So things have been gradually getting worse. I required platelets yesterday, and my neutrophils - essentially my immune system - are down to about zero now. I have to be super careful to not pick up infections, and we're monitoring my temperature around the clock. Any temp above 100.5 is a guaranteed hospital admission. Today they started me on Vancomycin twice a day; next dose at midnight. A two hour infusion that I'm doing at home. This is for some pretty rough mouth sores and sore throat that have developed that keep me from eating most solid foods. Cold things like smoothies, iced juices, tapioca, Ensures are pretty much the order of the day I manage to stay hydrated. I have a mouthwash that provides some relief, but not quite as much as some pretty strong pain meds. The upside, I suppose, is that there has been some loss of tonnage.
My energy is way down and most of the day I feel like laying in bed. Judy is here taking excellent care of me and we are having some good laughs. The hideous weather of a couple days ago has broken and it is beautiful, classic spring weather now (60's at night, low 80's during the day, breezy and dry). So that's a blessing. The great care at Hopkins is a blessing too, they never cease to impress me. More soon when my head is a bit clearer. Thanks all ~

Tuesday, May 31, 2011

The ton of bricks has arrived

This morning the sun is already up and blazing, with a predicted high of 96. The air conditioners are already humming. One of the upsides to being in the clinic is not having to be outside. Today's appointment is at 1:30, later than usual. Last two days have involved 4 hour infusions of Tacrolimus (sounds like a kids movie villain). It's one of two immune system suppressants that I will be taking for the next six months or so to keep my body from rejecting the transplant (Republican marrow aside). In another day or two I will switch to pills and then my clinic visits will be @ 2 hours each, unless my counts are so low that I need platelet or red cell transfusions. Examples of my counts from yesterday with normal range in parentheses:
White cells - 1010 (4500-11000)
Hematocrit - 38.1 (41-53)
Platelets - 44 (150-350)
Neutrophils - 808 (1500-7800)
All of these are expected to get much lower, with some of them reaching zero, or undetectable. The neutrophils are the important measure in disease fighting, and now that I'm below range I have to wear a mask out of the house.

Side effects are now making themselves known in larger ways:
- mouth and throat sores, that are fairly well controlled with a salt and baking soda rinse. Becoming sensitive to citrus, spice, etc
- extreme fatigue that is amenable to naps. I can rally myself for some things like a brief trip to the market (mask on), watering the yard. Hard to get motivated.
- chemo brain! Hard to remember things fairly often, hard to remember where the lists are that I made.
- there's more, but I forget at this moment. Seriously.

Otherwise things are on track. Steve is here keeping me good company and being very helpful. Judy arrives on Wednesday night. I am behind in writing this and notes to folks, thanks for understanding. Please don't hesitate to call - early evening my time is best (6-9). Leave a message here, or email me at Mark21213@gmail.com. Thanks for all your support!

Saturday, May 28, 2011

Tired Puppy

Apologies for not writing recently, I have just completed two long days at the clinic getting my last chemo and a boatload of hydration. For some reason it wasn't leaving me as fast as it was coming in, so there was a late start to the chemo the first day which ended up being 13 hours long (sorry Mike!) Gained 12 pounds that day and after 80mg of Lasix, spent last night up and down, up and down getting rid of it. Lost it all too. Put on the squeezy stockings today (thank you Scott) which helped a lot and was out in just under 12 hours. Anyway, I'm exhausted so this will be short. I start the immuno-suppressive drugs tomorrow (Sunday) and the days will be much shorter so I'll have more time to write then. My butt has been officially kicked.
Thank you Nancita Bonita Cornchipchita for the divine chocolates and sauces ~ the nurses did confirm that chocolate is an essential part of the healing process.

Wednesday, May 25, 2011

It's Official!

I'm neutropenic! Actually it's nothing to celebrate, it means that my neutrophils - the cells that fight germs - have dropped below the normal range. This is expected, and really not to be taken lightly. For the next several weeks I have to be super-careful about what I touch, breathe and eat. Any temp over 100.4 has to be reported to the clinic, even after hours. It will most likely signify an infection and get me admitted to the hospital PDQ. Hence the precautions. My dear friend Fred, who has done a tremendous amount for me the last 11 days, has shown me all that I need to know, and I am confident that I can pass it on to future caregivers.
Yes, I do look good and sound great. This will erode with time, but the important thing is to keep my attitude positive and moisturize moisturize moisturize. Or something like that. When I start really feeling like crap I promise to let you know. Meanwhile, I get to deal with the arrival of summer: 92 charming degrees tomorrow, ugh! Note to caregiver: bring light clothes. And cool San Francisco air.
My brother Scott arrived home safely today, thank you again and again. Sorry to be such a pain in the back! And thanks to John and to Jed for the beautiful flowers, they lifted my spirits a tremendous amount.

Tuesday, May 24, 2011

Day 0

Done! The transplant went off without a hitch; I had no adverse reactions to the new marrow. My brother did well and will be on his way back to California tomorrow. Next comes two days of 'rest' though I will still report to the clinic each day for blood work. Friday and Saturday are loooong days, 12 hours each, with a little chemo and a lot of fluids. And that will be the last of it. Blood counts will recover over the next 3-4 weeks. Have I said all this before? Chemo brain, sorry. Anyway, I appreciate the comments about looking and sounding good, but please remember that my energy is paper thin and I'm highly susceptible to infection during the next few weeks.
Again, many thanks to my brother, Fred, Steve and those to come. More soon.

Monday, May 23, 2011

The Penultimate Day

I've always wanted to use the word ' penultimate' and now I have the chance. Eat, drink and be merry for tomorrow we transplant! I have survived, with my dear friend Fred's amazing support, the last week of chemo. It's been rocky but I feel pretty good tonight. Let me correct a few things I've heard in people's well-meant words. It is my brother that will be in surgery tomorrow, though he will be, well, punctured rather than cut into. He will be under general anesthetic for a short period, and has some lovely pain medication to help him through afterward. The marrow will be taken up to a lab and fiddled with for 2-3 hours I am told, and then I will get it back in the clinic via IV infusion. It will look for all the world like an infusion of blood, rather anti-climactic.
I am not spending tonight in the hospital, though I wish I were - Scott has to be there at 5:30 AM. Apparently beauty sleep can be dispensed with for transplantation. [There is a whole line of jokes about a 'Trans Plantation' here in the South that I will spare you from.] I go to the clinic when it opens at 7:30. We will probably be home by 2 or 3 in the afternoon. This whole procedure is designed to be done on an outpatient basis, though there is a fair chance that I may have to be admitted at some point down the line for what's called a 'neutropenic fever.' Any temp over 100.4 has to be called in immediately and is a likely an infection due to insufficient germ-fighting cells (neutrophils). The upside to that is that the admission is immediate: I bypass the ER completely.
The bigger test, it would appear, is two more days of chemo on Friday and Saturday. An agent charmingly named Cytoxan, and yes you heard it right, post-transplant chemo. It apparently has no negative effect on the transplant. After that it's all recovery, though not without risk. My (blood) counts should return about 3 weeks after that, but there will be immuno-suppressive drugs so that my body doesn't resist the transplant. Lots of stuff managed (mostly) by smarter people than myself. My job is stay away from sneezy people and not eat things like sushi. And wash my hands all the time.
All that said I want to reiterate how grateful I am to you all for your kind words, prayers and warm wishes. Thanks to my nephew, newly minted Second Lieutenant Steven Moody, for stopping by in his Army uniform. Thanks to my future caregivers. I know that Dennis, whom I miss so much, is watching over me and that I am rich beyond measure in family and friends. Thank you all, from the bottom of my heart. More tomorrow.