Monday, May 10, 2010

I Used To Be 'Big Boned'

     Today I met with my wonderful local oncologist/hematologist, Dr. Wm Bonis.  Everything looks good, even though my red count is not high, but it's likely still the aftermath of my drugs.  But it's also not low and I do not need another transfusion!  He stated that the numbers mean that I'm ready to start the "maintenance" program of Revlimid.  He and Dr Wolf are a little at odds over the dose and duration thing, and we'll have to resolve those issues during our appointment with Dr Wolf on May 25th, but we're ready to move forward with the next step.   I'm doing very well and have even gained three pounds, FROM EATING! Whoa.
     The first thing you do is get into a "program" sponsored by the drug company.  Revlimid is a sister drug the phalidamide.  Remember all those deformed babies from the 60s due to phalidimide?  Well, that's one of the drugs that they tried to get me on early in my cancer, but I threw it right up.  A drugs no good if you can't keep it down, so we did other chemos.  But apparently it's good (or would it be more correct to say 'bad') for the cancer.  Fortunately, I only have to take it for 3 weeks in a row, then I get a week off to let me and my body adjust.  Good thing, THEN it's only $8,000 a month, the good Dr informed me.  His nurse, Nancy, started the paperwork for us to get into the 'program' where the drug company, because it's still experimental, will cover the cost as long as the Drs keep good records, I am monitored at least monthly with blood tests and such stuff, the Drs and I make the information available, and I contact the company via telephone to report how the drug is effecting me monthly.  Interesting to note that if I fail to call them, they cut me off and I have to re-qualify.  The prescription is for 21 days, only.
      The other fact of note is that Dr Bonis is not big on me taking the super calcium drug that Dr Wolf recommends for re-building my bones because it can cause kidney damage.  Dr Wolf is less concerned about that.  My twentieth or so miracle in my recovery after my initial near death by kidney failure experience was when Dr Lowell Lo, the neuphrologist (kidney Dr) said he'd be happy and I'd be lucky to have 25% of my kidney function after my initial 3 days of dialysis.  Do you remember this story from my very first week at UCSF?  He's the one that I told would have to admit that my recovery would be a miracle, and he laughed.  Then my kidney function went from 20%, to 25%, to 35%, to 50%, to 60%, to 75%, to (spoken with a fairly thick Chinese accent) "They're rike in plistine condition!" (like, pristine).  He finally admitted, "It is miraculous".  My bones were eaten so much, particularly my vertebrae, that I lost about 2 inches of height.  My left shoulder blade has holes in it.  My ribs broke so easily that I broke a few of them just rolling out of bed.  Big tumor on my right hip (since zapped by radiation) that left a big dent.  3 collapsed vertebrae, since repaired.  Every bone in my body was effected.  After my bone scan I asked the Dr for a report.  He just said, "You don't want to know".   I just realized, I'll have to remind Dale that due to the cancer, I'm literally not as 'thick headed' as I was before.  She'll probably just say something like, "Well, you make up for it with your lack of mental acuity due to your chemo brain, Einstein."  Maybe I won't say anything.


  1. Good luck guinea pig. I will pray for you. I know that "Miracles" is your middle name, so I will count on the Lord to get you through this one as well.
    I love you.

  2. Probably not a good idea to say anything to Dale. Just leave it. Love you. Everything is going to be fine.

  3. Well Dale will just say you have no backbone....anymore or any less. love you bro.

  4. You need to "bone up" on those jokes Kevin. Does the height change mean you can't "dunk" anymore? I might be able to beat you arm wrestling now! Jokes aside - it is so wonderful to see your improvement and the miracle it is for you and the family. We wish for the Lord's continued blessings and send our love. Butch Pogue and family