An Update & Request for Prayer: March 16, 2010

Most of you didn't know that I snuck away to Ohio State to consult with my leukemia specialist this week. :-) I have been bogged down on my blogging!

It was a difficult day at Ohio State. Dr. B was surprised (and I believe disappointed) to see how my health had declined since my August visit with him. My spleen and lymph nodes were larger; my hemoglobin and platelets had worsened; and my infection rate has increased.

When I asked Dr. B what my prospects are for survival with this palliative course I have been on, he told me I probably have "months to a year" to live - perhaps 2 years at most IF I didn't contract a life-threatening infection and IF my counts stabilized. Months aren't enough time for me to do all and see all and share all that I want to with my loved ones.

I've been told many times that I have "years" to live but never "months". It has been a difficult couple of days as I attempt to process this information. On our drive home, the song EVERYTHING TO ME (previous post on blog) played and I knew it was God speaking to me at that very moment of deep hurt and heartache. I have held that song in my heart today and know that ultimately, He will always be my everything, no matter how challenging the situation. I pray I can die gracefully and in a way that honors Him (but would really prefer to soar out of here at the Rapture).

IF I decide I want to treat (yet again) with another drug, Dr. B's recommendation was for me to try Revlimid (as he recommended last year when he sent me to the NIH). Arriving home,I discover that another leukemia patient had posted his own Revlimid account on his blog and this made me less intrigued by this treatment option as he has experienced some serious side effects (tumor flare).

Dr. B's logic in recommending Revlimid is that since I have such damage to my immune system and he has always felt I also have Common Variable Immune Deficiency, that with Revlimid being an immunomodulating drug (versus a chemotherapeutic agent) that despite Revlimid's risks (tumor flare, tumor lysis, neutropenia, thrombocytopenia) that it might be my best bet.

To enroll in this trial would demand much travel on my behalf. That is another downside - if I only have months to live, I don't believe I want to spend it away from my family. To be able to take the drug off-trial in our hometown, would make it a bit more appealing to me but that is not an option. The medication alone will cost $60,000 per year and since it is not FDA approved yet, insurance will not pay for it, thus the need to utilize it in the context of a clinical trial where the drug is provided by the manufacturer.

Knowing Dr. B and his OSU team were caring for me as I took this risky drug would give me much more peace than receiving this drug locally. As of tonight, I sense no direction to resume any treatment.

Please pray for the Holy Spirit's comfort for my family and me. And I need a big, heaping dose of God's wisdom! I trust Him alone.

PS - I developed some kind of infection in my lungs over the weekend. I was running a fever and had a nasty cough at OSU, so they wanted me to begin another antibiotic for that. Thursday, I will receive my second electroacupuncture treatment and on Friday, I will receive my all day IVIG infusion.