Wednesday, March 16, 2005

After all that excitement

Phase II
As I emailed you all, the results of the bone marrow biopsy and lumbar puncture show no leukemic cells; I am in remission and starting phase II. This is all very good news. I think the docs don’t really need the bone marrow biopsy and LP except to confirm what they already know but can’t legally say, and that is why it is not foremost in their mind to GET ME THE DANG RESULTS! I let them know the patient’s perspective.

Speaking of perspective, last Thursday at Stanford when the new resident doctor came in to give me the preliminary inspection, he started out by asking all these questions. Now, I just had the bone marrow test and the lumbar puncture to see if I am in remission or am I going to go back to induction and need bone marrow transplants. He asks a couple questions, and then he starts asking about my siblings. How old are they, where do they live, do they have any cancers? Dana and I trade glances, thinking Oh Shit, I am not in remission and they are setting up for bone marrow transplant. It turns out he was filling in blanks on the patient information sheet. Scared the heck out of me.

We started phase II yesterday, Tuesday, and it was quite a cocktail party. I had an IV of cyclophosphamide, a subcutaneous shot of cytarabine in the stomach, some steroids and anti-nauseas to counter the side effects, and some 6-mercaptopurine (6MP) in a pill when I got home. They gave me these handouts showing all the side effects of each. A couple said I had to drink 2 to 3 quarts of fluid to flush the bladder, but another said one of the side effects was an inability to urinate. I asked the nurses if anyone had ever exploded from this combination, but they ignored me. Just about every drug in phase II causes hair loss, low blood counts and nausea. I took some spare anti-nausea pills home, but I had no ill reactions. Until today.

Doc, did you say Bulimia or Leukemia?
I guess it was bound to happen sooner or later; you just can’t pound the human body with that many chemicals for that long and not get a reaction. The drugs they are giving me all target fast growing cells, because cancer cells are cells that cannot stop dividing hence they grow fast. The other fast growing cells that get hammered in this process are hair, mucous membranes and nails. My hair is trying to grow back, my nails are like rocks, and my mucous membranes have been fine until today. I went in for a shot of cytarabine this morning, in the stomach again, and took my 6MP pill when I got home at 9:30, along with docuset, protonix and augmentin for the ear infection. Most of these chemo drugs cause a nadir (low point) in 7-10 days, so I am still having effects from the last round.

All morning I was having problems with diaphragm spasms, not really hiccups or belches, but some variant. Given the chemistry set that got dumped in me I wasn’t surprised. Around 1:00 I heated up a bowl of soup, made some toast, then went in the bathroom and puked about 5 times. I just couldn’t talk myself into the "nausea is really hunger" thing that had worked in the past. The puking ended the whole gas problem I was having, and I really felt better.


After resolving Mike’s crisis of dress rehearsal pants, and let me digress here by asking if it doesn’t seem reasonable to expect a kid to do something all by himself after you have prompted him 7,567 times? You tell a kid to brush his teeth every morning and night for 11 years; you would expect it to sink in. That’s over 8,000 times, and yet try skipping telling him for a night. Anyway, in spite of asking 2,378 times if you’re all ready for school the night before, Mike forgot his dress rehearsal pants. After I drove him his pants, I ate my soup and toast, and I felt fine.

I am having a pretty low-key week, Phase II is starting with a slam, because of the lack of daily steroids I think. I am still gaining weight, up to 176, thanks to all the food the Sinsheimer School (Dana’s school) staff keeps sending over, and no energy for walking. I have to get a grip on the income/outflow side of the energy equation; maybe bulimia is the answer. This phase goes on for 8 weeks. It seems like Phase I was a mental battle, like the first round of a fight, where you size up the opponent, find his weakness and strength and formulate a game plan. It starts to become apparent in Phase II that this is one of those 42 round bare knuckles fights they used to have. Stamina is going to count for a lot.

Gypsy Moths

In the early ‘80’s in RI and New England, we had the attack of the gypsy moths. These moths increase their population for 7 years to huge levels, then they decrease for 4 years. They are so thick in the woods that their feces falling to the leaf litter sounds like falling rain, and cars skid on the caterpillar corpse juice all over certain roads. They make for great eyebrows, though.

gypsy moth

5 comments:

  1. John
    the moths look much better on you than they did on the roads.
    how is that for a nice, positive greeting that shouldn't set anybody off, even in Alabama?
    love,
    pat

    ReplyDelete
  2. When you wrote about the possibility of exploding from the inability to urinate, it reminded me of the joke about the guys who get their very inexperienced friend a life size inflatable “Barbie” doll and put in his bed as a surprize. The next morning when they ask him how things went, he says, “Not well, I nipped her on the butt, she farted and flew out the window.”

    I just had to write something...I am a blog bar alcoholic.
    No Name Please, Im too em bare assed

    ReplyDelete
  3. John Da Man,
    So glad y'all are in the remission and streaking into Phase II.
    HAPPY ST. PATRICK'S DAY ! ! ! !
    It do sound like you need to be careful with the side effects. Diaphragm spasms, three quarts of liquid, inability to urinate, then all those drug cocktails. My hat's off to ya man. I think I'de rather have my weenie caught in the wood burnin stove.
    Hey, by the way, the gals in the office here are waitin for more butt pictures. They think yer hot, even without the steroids. Asked if you could lose the robe in at least one of those shots.
    Sorry to see that John Prine's not on the comment section any longer. I sent him the nude photos of that woman from up north you sent me. In return, he sent me extra tickets for the show in B'ham next month.
    Also got a note back from Paul Newman. You may have seen or read the news late last week that he's retiring from acting - only gonna do one more movie. Yes, you guessed it - that's because he has decided to direct his full time energy to Mac's Ho-Spice. Coming soon to a market near you.
    Hang in there dude. I have ta grab the 22 and head out to the back yard. I saw a couple of chipmonks (cat food) out there. Since I lost all my $$$ on golf, it's chipmonk chunks for the little kitties tonight.
    Luv Ya.
    Mac

    ReplyDelete
  4. what? no update in almost a week?!
    what are we to think?
    People that care about you and read this blog faithfully need to be kept in the loop ;)

    ReplyDelete
  5. My name is Michael Rodman and i would like to show you my personal experience with Protonix.

    I am 39 years old. Have been on Protonix for 2 years now. Miracle drug I have suffered with gerd for a long time and tried many treatments, some because coverage wasnt allowed, so my dr had been given me samples. When I am on this meds I am painfree thank god. I feel normal. I have run out of supplies and I have been in such pain that I sleep sitting up. I go back today to get more samples, today thank god.

    No side effects that i remember so they cant be that bad

    I hope this information will be useful to others,
    Michael Rodman

    ReplyDelete