Wednesday, March 31, 2010

Dang it, I'm back

Dear blog readers, I am sorry to say that I have to now reopen the blog, and rename it again. This is like an episode from the Twilight Zone - twice I have entered the ‘final’ blog post, and each time I have relapsed within a few months. In other words, I have relapsed again! Three strikes and you’re out! Third time is a charm! Third on a match gets pregnant! Three’s a crowd!

I was supposed to be getting my hip replaced around March 22, and in preparation we did a bone density scan. My bone density is fine, but some gray areas were seen in and around my pancreas. Ultrasound showed these to be 2 masses in my pancreas and a third in my kidney. The largest, in my pancreas, is the size of a small potato, about 3”x2.5”x1.5”, and not as tasty. CT scan showed it even better, and a taste test proved that a potato is a better baker.

A biopsy of the mass in the pancreas showed this to be made of leukemic cells, and the assumption is the other 2 masses are also leukemic cells. We followed up with a bone marrow biopsy last Wednesday, and I received the news Monday that there are leukemic cells in my bone marrow, but in very small quantities. My blood tests have not changed, with slight anemia and no other abnormalities.

So, the leukemia is back in spite of a successful BMT. It is back in an abnormal way, but it is back. Grrrrrrr, give me a break, this isn’t fair, where is God?, etc. etc. As much as I tried, all the ranting and raving and tears and wailing and gnashing of teeth won’t change anything.

The action plan is as follows: Stop the prednisone immediately, and cut the prograf to 1mg every other day. This should allow the immune system to fight harder and hopefully kill this cancer attack. The minor graft v. host I have had for over a year was not a good thing, after all, so we need to stir up this immune system into attack mode. Chances of this succeeding are not that good, but it could happen.

In ten days we do another CT scan to see if the masses are shrinking. If so, great. If not, we move on to chemotherapy. You know me, I love some red death and numb me up. Actually, I may get new stuff, as I may have reached my lifetime amounts of the old chemos. Seems odd that they'd worry about that, just give me what works best. Additionally we may want to harvest leukocytes (WBCs) from Lisa and transfuse them into me, for an extra boost of cancer fighters, henceforth called DLI (donor leukocyte infusion). The docs are also looking into clinical trials.

My body is responding either psychosomatically or for real, with backaches, joint pain, stomachaches and lightheadedness. I am chilled a lot, and my #$%@^ing hip is killing me, but that is not getting replaced any time soon, and I limp on. I walk around like I am drunk, careening into things.

So fellow wanderers, here we go again. Needless to say, I am shattered by this news, and worrying how much is left in my tank of will and positivity. I am trying not to dwell on this, and mostly succeeding. In the back of my mind I am developing a bucket list, but you didn’t hear that and I didn’t say it, that is too gloomy a thought. We all will die, I am ok with that, but I thought I went through some agony to gain ten more years, won that bet, and now feel shorted.

To add to this, the Social Security people sent me a notice that they had overpaid me, and to please send them a check for $85,000 in 30 days. I filed my appeal Monday morning. Since I am feeling so lucky these days, Dana and I are going to Las Vegas for the anniversary trip we didn’t take last November. We’re leaving today and coming back Sunday. I have a plan to drop $85K on black at the roulette wheel, and see what happens. Wish me luck!

9 comments:

  1. John I am sick over this news!!! How much can a person take???? Keep fighting John! Bill Mcniff

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  2. John and Dana! unbelievable!
    1-keep up the fight
    2-Keep up as much positive-ness as you can muster
    3-screw social security
    4-get handicap placard from DMV for hip limp- front row parking!
    my best ju ju thoughts now and always
    Debbie Gordon

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  3. there are no words where the winds don't blow,
    to infinity and beyond, buzz lightyear
    to the moon alice, ralph kramde
    I have been reading slowly Still Here by Ram Das. The companion video is very good.
    sorry I missed you on your last visit to the east coast and RI

    Hope to see you again

    Mo

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  4. John, I don't know what to say except that You have been fighting the fight so hard, that it defines you. You know how us Warwick guys like to tease you about knowing the rules, so make up the rules yourself now just the way you think they ought to be
    Randy

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  5. ~~~ooo wah~~~ooo wah~~~ooo wah, ooo-uu-waaaaahah

    shouldn't one of us anonymous married people admit april fools day is a GREAT time to celebrate your anniversary whenever it was?!

    live it up, watch out for flying Elvises and keep a writing...

    it sure would be hard for all of us to try to keep you going without you here to lead us

    love

    pat

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  6. Yeah, Rhode Island is under water but you are not. You're fighting up to the surface again and again, you grandkid of a submariner. Social Security should be ashamed of itself......., as if it had a heart or brain. You are the big guts man! All love and good luck on that big bet. And thanks to you too Dana! love, ya brudda Frank

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  7. OK, John, the lesson is....never stop blogging or the cancer comes back! But seriously, we are praying for you again. As far as the SS, well, what do you expect from the government...

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  8. My heart sank when I heard the news. I'll be here with the regulars, back at the blog bar, to offer whatever support I can.
    Really sorry that you have to write this sequel...... Another year, another war, the warrier is resurrected! Break out the implements of destruction and lets start killing those leukemic bastards once again.

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  9. Crap, crap, crap, and more crap.

    Leukemia cell bastards and social security both suck the big one. Don’t get me started on the gument.

    I’m so sorry my friend. A triple bogey just when you thought you had a par in the bag. I hope you can think of it as just making the turn when you felt like the game was almost over. Like golf, there are a lot of holes left to play.

    Hang in there John. Keep a goin.

    Just know, all of us out here will be by your side and cheering for you. And we look forward to yet another sign-off from you on this blog bar, once again kicking butt and breaking through to new barriers.

    Be strong, John Da Man.

    Mac

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