Into the Batter's Box...Again

MD Anderson Cancer Center, October, 2008

     In the summer of 2008, I was on the road to recovery from my heart surgery.  Though the spectre of further medical tests due to my blood problems while undergoing heart surgery (Read "The Heart of the Matter: A Chronicle of Heart Bypass Surgery," May, 2014) still hung over my head, I had been able to ignore the problem by avoiding my primary physician and his oncologist wife.  Shirley was still working at San Jacinto Methodist and ran into my two good doctors on a somewhat regular basis, and who, in their concern, were constantly asking Shirley when her husband was going to come in for the tests.  I was not anxious to start the tests.  Beyond the regular blood tests, Doctor Medellin (the oncologist) was also wanting to do a bone marrow aspiration to get an indication of the condition of my bones.  I had been the recipient of one of these tests about five years earlier, and I could say without qualification it was the most painful procedure I had ever experienced…and I was not anxious to repeat the torture.  So I avoided Doctor Medellin.

    But sure enough, the day came.  I went to the hospital to visit Shirley and while speaking to her, up walked my favorite oncologist.  By this time it was late August, and she would not take “no” for an answer.  Realizing it was something I really needed to do, anyway, I agreed to a date for the tests.  When the day came, the blood tests were a snap, as usual, but then came the bone marrow aspiration.  Doctor Medellin did the procedure herself, and I was very tense, to put it mildly.  However, in a matter of minutes, she put me at ease, and the aspiration went by without a hitch…and even very little pain.  As I write this, I have had several of these BMAs, and each has been very ordinary.  I have decided that I must have been the first BMA patient for my first doctor of several years ago, and he apparently had been still a little unsure of the process.

    It was not a good sign when a few days later, the doctor’s office called and requested I undergo further tests, including a CATscan, a PETscan and various other x-rays.  With a certain amount of resistance and anxiety, I agreed to the tests and all were completed.  It didn’t help my anxiety that when I had the PETscan done, they used a radioactive dye that was sealed in a large lead container.  When it was administered to me via IV, the technician said, “Now when you go to the bathroom tonight your toilet water may glow, but that’s normal!”  I don’t know if he was serious or not.

    Eventually, all the test data and pathology reports arrived on Doctor Medellin’s desk, and Shirley and I were called in for consultation.  What she told us put us into a stunned silence and not a small bit of disbelief.  The words “cancer,” “lymphoma”, “M D Anderson Cancer Clinic,” and “chemotherapy” were thrown out with my name right in the middle of them all.  She suggested an appointment with M D Anderson to register and begin the process of further testing to determine the exact extent of the “suspected” disease.  She spoke professionally and detachedly as doctors do when delivering bad news and did not offer any encouraging prognosis at all.  I needed, she said, to get to M D Anderson Cancer Clinic.

    Shirley and I left the office and had little to say as we headed home.  We were still in a state of shock over this sudden development.  At that time, I had no symptoms and felt pretty well, but my strength had not returned as it should have from my heart surgery, and now, looking back, it was probably because my white cell count had dramatically dropped.

    In early September, I registered with MDA (M D Anderson) and they immediately repeated all the tests that San Jacinto Methodist had done, much to my despair.  Within three weeks, I had been rediagnosed with hairy cell leukemia instead of lymphoma, which the doctor said was actually better because lymphoma is rarely cured, but only put into remission, whereas hairy cell leukemia can be completely cured.  Neither disease particularly appealed to me.  On October 6, I visited Doctor Ravandi-Kashani, the resident leukemia expert, who told me, “I have treated thirty hairy cell patients in the last two years and cured every one….and I’m not going to let you ruin my record!”  Already I liked him.  Doctor Ravandi prescribed a chemotherapy which included three powerful drugs.  He also made sure I understood that the coming days would get worse before they got better, and that chemotherapy can have many side effects.  But in the end, he promised, we could lick this problem.

    On October 20, 2008, I began my chemotherapy treatments.  Shirley and I left home early and were at MDA by 8:00 a.m.  I was placed in a hospital bed behind curtains as is normal in hospital treatment rooms, and for four hours through an IV I received the powerful liquid Cladrabine.  It is probably just as well that at that particular moment I did not know that each little one liter plastic bag of the stuff cost $12,000.  Thank the Lord for good insurance. This first session of chemo was a bit of a shock to my body, and during the process, I experienced alternating severe chills and heat waves.  They were either throwing blankets on me or pulling them off.  Eventually I settled down, and after the IV was depleted, I was required to just sit still for an hour to make sure there were no late effects.  There were none, and we headed home.  This process was repeated every day for the first week, and by the third day, I was having no heat/cold reactions, but I was losing my strength and had very little energy.  On Sunday of the first week’s end, I was given a Neulasta injection…some kind of a booster shot to increase the effectiveness of the Cladrabine.

   By the next day, Monday, I was running a high fever, and when we got to MDA, the doctor took my temperature and admitted me to the hospital section of MDA.  For the next five days, they worked to get my fever down without much success, but it finally dissipated on the sixth day, and we were able to go home on Sunday…only to have to come back the next day for my treatment.  At least by then I was scheduled to have only one treatment per week in order to give the Cladrabine time to do its magic. By the end of the treatment on Monday, I was dragging a bit and on Tuesday and Wednesday I was barely active.  Thursday morning I awoke with a splitting headache, and as the day wore on it turned into a migraine, and by Sunday I could not stand to hear a car drive by our house.  On Monday, when we went to MDA, I described my problem to my doctor, and he sent me to the Emergency Room, where I was admitted.

    It was here that MDA let me down a bit.  When I described my migraine to them, I was put through a battery of cranial tests, and when it was determined I had no brain tumors or obvious head problems, they told me, “Well, it will go away,” and I was released…still with the migraine.  The migraine continued into the next week, and I could not move or open my eyes.  On Wednesday, Shirley went to her work at the hospital and was describing my problem to one of the nurses.  The nurse had a history of migraines and told Shirley, “I’ll tell you, when I get a bad migraine I usually take six or seven (somethings)….I can’t remember what the pain medication was, but usually a person took no more than a couple of tablets at a time.  When Shirley told me, and I realized we had some of the pain pills at home, I decided I had nothing to lose….and took six of the tablets.  In two hours my migraine was gone and never came back.

    My migraine was gone, but so was my strength.  My weekly blood tests showed that my white cell count had dropped to 0.2 K/uL with the normal range being 5.0 – 11.0.  As a result of my weakness, after my treatments on Mondays I was given two units of whole blood.  It was an amazing experience; as I received the blood I could feel strength coming back.  More often than not, when we left the hospital, I would be starving and feeling well enough to stop and eat on the way home.  But the strength lasted only a few days, and the process would repeat itself the next week.

    In mid-November I took my last Cladrabine treatment with the Neulasta booster and started a new chemotherapy called Retuximab.  There was a dramatic change in the way I felt.  My white cell count began to creep up, and I began to feel a hint of returning strength.  From that time until mid-January, 2009, it was a slow process of weekly treatments and returning strength.  Each week, the latest blood test would be scrutinized with the intensity of a report card as we measured the white cell and red cell counts, platelets, and other vital statistics.  Each week showed improvement.

On January 30, 2009, we received the report we had been waiting for: “No overt morphologic evidence of residual leukemia.”

    Having survived heart surgery and leukemia, I have found it is easier to think that one can face any obstacle…and there have been more challenges in these later years.  In April, 2009, I underwent surgery on my right arm for removal of a cancerous melanoma.  At the time, however, it seemed just a minor bump in the road compared to the earlier major ordeals.  More recently, in April of 2014, I received a new left hip which has improved my mobility and quality of life dramatically.  In October of 2014, I underwent a left carotid endarterectomy…basically a clearing of a blockage in the left carotid artery in my neck.  Again, compared to 2008-2009…just a minor bump in the road, but another bump loomed almost immediately.

    I received the news from two reliable sources in a matter of twenty-four hours.  Shortly after my neck surgery I went in for my annual checkup at M. D. Anderson Cancer Center. The usual blood tests were done, but when I met my hematologist, I received the news that I had a new diagnosis: Chronic Lymphocytic Leukemia.  This version of leukemia works differently from my former hairy cell type which featured rapidly dropping white cell counts; CLL features a rapidly rising white cell count. Doctor Ravandi comforted me by stating CLL was a very slow progressing disease, and I was not at the threshold which required treatment.  It was just something we would be closely monitoring in the future.  I was concerned, but comforted at the same time.  The next day after I had visited MDA, I received a call from my cardiologist, and with a voice of concern he stated that he had looked at the blood tests taken just before my carotid surgery and was concerned that I may be a candidate for CLL.  I thanked him for his concern and said I had already been made aware of the problem.  So my diagnosis was confirmed by two reliable sources.

    From the autumn of 2014 to spring of 2018, I visited MDA on a regular basis.  My white count remained high, but stable, far below the point that treatment was required.   In April, however, I began to have pain in my left foot that reached an agonizing level before I could get to a doctor.  Upon diagnosis, it was determined that the problem was probably gout.  I was prescribed a painkiller and scheduled for a lab test to check my uric acid level, which apparently is an indication of gout.  I received the lab report on line, and upon looking at it, I saw immediately that my uric acid level was normal....but my white count was through the roof, far above treatment levels.  I immediately contacted MDA and in two days I was in the office of my hematologist of nearly ten years.  He confirmed the need for treatment.  Chemotherapy was prescribed, but this time it would be in pill form rather than IV, and I would be taking the pills at home.  

     We walked down to the MDA pharmacy to fill the prescription, and I nearly fainted when I saw the price of the chemo prescription: twenty-eight pills for $11,100.00!  My reaction went from panic to relief rapidly when the pharmacist told me my co-pay was $50.00.  Thank God for insurance!  I have now been taking the pills for five weeks (another $11,100 refill) and the treatment seems to be working.  My white count level is going in the right direction.

    To those people who love baseball, I have heard the analogy that stepping into the batter’s box to face a pitcher is a microcosm of life.  The pitcher, like life itself, is determined to throw a pitch that you cannot hit and thus defeat you by striking you out.  The batter is determined, at the same time, to take the challenge thrown to him, hit a homerun, and enjoy the fruits of victory and the accolades of the crowd...in other words, to be successful against life’s challenges. One thing we can be certain of, life (the opposing pitcher) will be throwing us curveballs and unexpected pitches as long as we live.  How we face life’s adversities will determine the level of success we enjoy.  I have stepped into the batter’s box on numerous occasions and have had a measure of success.  With support and prayers of family, friends, and church I hope once again to hit the ball out of the park.