Sudden Disappointment

This was supposed to be a positive and thankful posting...and it was going to be that until a phone call at 5:30 turned the tables on me.

This afternoon we met with Dr. Lebovic, my new oncologist, for the first time since I have started on the newest chemo drug Pomalyst, specially formulated for people for whom at least two other therapies have not worked (c'est moi).  Hope was high that we would see improvement and when the blood test came back the numbers seemed to support that.  In particular, my hemoglobin was 9.1 which was up although my platelets were down in the mid 30's which was not good.  All in all the sense was that we would continue for the rest of the three week period taking the new drug and then evaluate the progress.  We left happy that we were on the right track.

Then just a few minutes before we were due to leave for a special Gilda's Club meeting tonight I got an unexpected phone call from Dr. Lebovic. Seems he was going over his charts as he does at the end of the day and noticed that we had been looking at the wrong numbers, readings from last week's blood work and in fact that the real reading for today was much worse!  As a matter of fact my hemoglobin had fallen from 9.1 to 8.4 and, worst of all, my platelets were at 27 or dangerously low.  As a result, he ordered me to stop taking the Pomalyst immediately and get off Eliquis, my blood thinner, because at this rate the cancer was thinning out my blood pretty well on its own and I had not had a blood clot before anyway.

I will follow up next Monday with further blood tests and a consultation with Dr. Lebovic and we will talk about next steps.  He feels that he can tell the effectiveness of a treatment within the first and second rounds which is much faster than the drug company told me (3-6 months).  In any case if this keeps on hammering my hemoglobin down, I will be in line for a transfusion soon although Dr. L has not spoken about that.  Basically I am heading back to huffing and puffing and being super susceptible to infections which I have miraculously avoided in the meantime by the grace of God.

I have to confess that my mood changed in an instant from hopeful to scared and disappointed after that call.  I had hoped that this newest kind of chemo would mean finally turning a corner toward remission.  This is the fourth form of chemo that has (or seems to be) failing to turn the disease around. Revlimid and Velcade had initially put me into complete remission within two months in 2009 but proved unable to stop the cancer as it returned in a mutated form in 2012. Later that year Thalidomide was tried and failed to bring a halt to the deterioration in my hemoglobin and platelets in particular.  Carfilzomib was one of the newest drugs for people with resistant disease and it was tried until early this fall when it was declared useless.

Then Dr. Shurafa handed me off to his excellent young partner Dr. Lebovic who was involved in much of the research into Revlimid and Velcade and is up on all the latest treatments.  He immediately prescribed Pomalyst (Pomalidomide) and I began taking it with much hope nearly two weeks ago.  So you can see why I am so discouraged to have this newest procedure halted while the readings are going down so quickly.

Part of the heaviness I feel is that this is close to the cutting edge of treatments and it appears to have failed so quickly.  In all honesty, I am running out of options and hope in treatment, which brings me back to the beginning: My hope in God.  I have already passed from death to life through the grace and mercy of God through faith in the finished work of salvation in Jesus death and resurrection.  I was just reading the other day Paul's remarkable death sentence on death in 1 Cor. 15

 54When the perishable has been clothed with the imperishable, and the mortal with immortality, then the saying that is written will come true: “Death has been swallowed up in victory.”^h55“Where, O death, is your victory?Where, O death, is your sting?”ⁱ56The sting of death is sin, and the power of sin is the law. 57But thanks be to God! He gives us the victory through our Lord Jesus Christ.58Therefore, my dear brothers and sisters, stand firm. Let nothing move you. Always give yourselves fully to the work of the Lord, because you know that your labor in the Lord is not in vain.

So what are we to do in the meantime?  Stand firm; don't let this fear of death freeze you. Keeping moving and working for the kingdom of God because nothing you do there goes for naught.  It's the best I can do for right now and hopefully the busy work of preparing for Thanksgiving will keep me occupied. I look forward to a joyous gathering of our extended tribe at the Episcopal camp in Brighton on Thursday and Friday.  I pray that you and I will find many blessings to count in the midst of our challenges and sorrows and know that "...all things work together for good for those who love the Lord, and are called according to His purposes." Rom. 8:28

Foster