Saturday, May 29, 2010

Hi. It's me again.

Hi.  It's me again.  Last Tues Dale and I made another trip to San Fran for checkup.  I drove up, Dale drove back, which was a good thing, as I started getting ill with a cold that afternoon.  We missed Hillary, who was helping Betsy King with the triplets.  To Hillary we say, "You did the right thing".

The appointment went well.  We first had a short visit with Twee, Dr Wolf's nurse practitioner.  Then we had a long visit with Dr 'Adam'.  That's his first name.  He's Polish.  No one can say his last name, so they just call him Adam.  He was very thorough in answering all of our questions, and in gathering information for our ultimate visit with Dr Wolf.   He gave us some interesting information regarding the medical study of Revlamid, the chemo "maintenance" drug that I will soon be ingesting.  He basically told us that it's all very new and experimental, but that when they started the study a year and a half ago, after one year they realized that none of the patients taking Revlamid had a re-occurrence of the cancer, but that several of those taking the placebo had.  The drug company felt it immoral to make the placebo group suffer any more, so they pulled the plug on the study last December, and put everyone on the Revlamid.  Without it, my recurrence probability was in a year or two, with the whole stem cell transplant thing (not as much fun as it sounds or looks) again.  He stated that with the recent advancements in the treatment for my particular form of cancer, that he expected a "cure" within the next 5-7 years.  Now that's good news.

Then Dr Wolf and Adam came in and made the decisions.  My numbers are still getting better, though not all the way to "we don't have any worries".  I don't need a blood transfusion.  I do have to get a bone marrow biopsy again from Dr Bonis, our local oncologist, before I should start the Revlamid.  From the indicators from the blood test, the cancer is still being held at bay, but the biopsy will get it down to the basic starting point of the cancer.  Dr Bonis got me into the study group for Revlamid, so the company that makes it, Cellgene, sends it to me at no cost, saving $8,000 a month in the cost of the still experimental drug.  All I have to do is fill out a survey they may send me after 20 days of taking the chemo pills, or talk to one of their representatives via a phone survey.  If I fail to do either, I'm dropped from the program.  They only send 28 pills.  If I don't tolerate it well, I'm to take them for 21 days with 1 week off in between.  If I do tolerate it well, then 28 days in a row, with no break.  Hey, if it works...

One of the little tug of wars between Dr Wolf & Bonis is regarding my starting a calcium replacement program.  Dr Bonis doesn't want me too, as it could cause kidney damage over the long term.  Drs Wolf & Adam insist, but are willing to lower the originally planned dosage.  Plus, I'll be getting blood tests at least once a month, and probably twice a month, and they'll order a test that would indicate any problem that could be starting due to the medication and adjust the dosage or stop it altogether.  So Zomeda here I come.
I have had such a wonderful week.  First Floyd Butterfield, great friend and inventor (go to ), took the time to take me out to lunch and for indescribably good chocolate cake, and I got to visit with him and Karla.  I also visited with and took back the wheel chair that Kim Kunz loaned us and got wonderful hugs and words of love and encouragement from him and Melody.  Then Ron Hogeland picked me up in his new Cobra replica and took me to lunch and we talked cancer (Ron's a year and a half survivor himself) and then he and his dear wife Barbara and Dale and I went to a movie together!  Those sort of moments, moments that I have been waiting for for a many months, have really lifted my spirits as you can never believe.  As Ron said to me over lunch, "It's amazing what you appreciate when you've had cancer."  Family and friends are at the very top of that list for me.

So for now things are continuing to look positive (imagine that) thanks to all of your prayers and good thoughts on our behalf.


  1. So happy for you that things are looking up! It is a wonderful age to live in with so many blessings. Hope all continues to move forward for you and we keep you in our prayers. Sincerely, Butch Pogue

  2. Hurray! So glad that you can experience a taste of "normal" life again. My thoughts and prayers for you will now focus on a positive reaction to the experimental medication. I love you and think of you everyday. I am kind of sick of it.
    one of your favorite nieces

  3. I was just thinking about you, and checked in on the blog. I am so glad to hear all the good news!
    I enjoy hearing you speak of the good Paso folks!

    Peggy Cann