Mary Pat looked across the table at me last night and asked, “What’s it feel like to have leukemia?”  I was stunned for a second.  I’m surprised the topic has never come up before.  She has asked me how I am feeling several times a day for months but she’s never asked how it feels to have the disease.  For those of you recently diagnosed with leukemia and for those of you who may be diagnosed in the future, here’s my answer:

  1. I don’t have physical pain.  I don’t have physical pain from the acute myeloid leukemia (AML) itself.  One of my medications, Levaquin, causes very painful inflammation of my tendons and cramping of my achilles tendon and calf muscles when I try to walk any distance at all.  The occasional bone marrow biopsies are also painful.  However, the cancer itself is not.  Unlike solid tumors that grow into and damage tissue and nerves, blood cancer doesn’t appear to cause physical pain.  In fact, I walked around for several months with full-blown leukemia and had no idea.  My original blood test was given during an annual physical exam in the first week of December of 2015.  The lab results showed a low WBC.  My doctor thought it might be a viral infection and urged that I get a second CBC.   I got re-tested in late January and discovered on February 4th when the results came back that I had even more blood abnormalities.  A bone marrow biopsy on February 8th confirmed I had leukemia.  In the two months I had leukemia before the diagnosis I had been walking around, exercising at the gym, having dinner with friends, and taking depositions in Florida.  I was generally living a normal life with no idea that anything was wrong except for a pesky mouth sore which I later learned was a symptom of leukemia.  If I had not had the annual physical and the follow-up blood exam, I would probably have died back in February.  Within a week of the time I was diagnosed, I already had 97% blasts in my bone marrow.  That means I had practically no ability to produce white blood cells to fight infection, red blood cells to carry oxygen, or platelets to stop bleeding.  Leukemia is a stealth cancer that can sneak up on you because there is no pain from the cancer itself.
  2. I am constantly worried and anxious.   I worry 24/7 about relapse. It’s like the Sword of Damocles that hangs over the head of every leukemia patient.  Even as I write this I am anxious to receive the results of my latest bone marrow biopsy.  One of the toughest things about leukemia is that statistically, no matter how strong the chemotherapy you receive or how successful your stem cell transplant appears to be, hundreds of leukemia cells are likely to survive and hang out in your bone marrow only to multiply when the right combination of mutations are in place.  The relapse rate is high in this disease and there is very little doctors can do for you if you do relapse.  NBA sports reporter Craig Sager has had two relapses from his AML.  Doctors at MD Anderson are preparing him for his third stem cell transplant.  I can tell you from experience that the ablation chemotherapy used to kill your existing bone marrow in preparation for a transplant has brutal side effects.  The fact that Sager is undergoing his third transplant procedure is a testament to his bravery and to his will to live.  As Sager said in his latest interview, “I will never give up.”  Nonetheless, he will suffer the same anxiety as me and every other leukemia patient as we wait for our bone marrow biopsy results to see if the disease has relapsed despite the latest stem cell transplant.
  3. I feel isolated.  Leukemia makes you feel isolated.  The disease, the chemotherapy, the drugs, and the stem cell transplant all combine to suppress your immune system.  That means you spend a large amount of your time isolated in your home.  You can’t risk going to restaurants where any restaurant worker who doesn’t wash his or her hands can give you an infection that kills you.  For long stretches of time you can’t go out with family members or friends because one of them may have been exposed to a disease that will not harm the average adult but can kill you because you have the immune system of an un-vaccinated three-month old.    I’m a prisoner 24/7.  That’s not to say that I don’t cheat now and then.  You can only stay indoors and eat home-cooked meals for so many weeks in a row before you go stir crazy.  However, the feeling of isolation never seems to go away.
  4. I miss the sun.  I can’t go out in the sun for fear that I will trigger a bout of GvHD.  For some reason, a stem cell transplant and the medications you take after the transplant make you very sensitive to the sun.  Sun exposure can cause your new immune system to attack your skin.  The results are not pretty or pleasant. I now know how a vampire feels so move over Brad Pitt and Tom Cruise.
  5. I worry about short-term memory.   One of the most frustrating things about having leukemia is memory problems.  Something has stolen my ability to acquire short-term memories. Not a day goes by that I don’t have trouble remembering whether I took my medications just an hour before.  Mary Pat commented a few days ago that I’d walked around all day with my T-shirt on backwards.  I asked her how she knew and she said I had the pocket in the back.  At least so far as I know I remembered to put my pants on before leaving the house that day. I am constantly losing things like umbrellas.  It’s very frustrating.  I don’t know if memory loss is a result of the medications I am taking, the brutal chemotherapy drugs, or the stem cell transplant itself.  I hope the problem will go away after I am weaned off some of these medications.  Only time will tell.  To all my relatives and friends to whom I owe phone calls or notes of thanks, I apologize if I have forgotten to get back with you.  Believe me, it’s not intentional.  I have “To Do” lists and “Reminder” lists started all over the house.  Someday I will remember where I put them.
  6. I can’t get warm.  I walk around the apartment in a jacket and cap even on the hottest of days.  My core body temperature seems to stay at about 97.1 degrees.  Sometimes in the morning it dips as low as 96.9.  Because of that I feel chilled much of the time.  I assume it’s the medications I’m on. Maybe it’s the anemia.   Although I am supposed to avoid the sun, I sometimes cheat and go outdoors for very short periods of time just to feel what it’s like to be warm again.
  7. I feel tired and have balance problems.  Fatigue seems to be a constant companion. It’s probably the low red blood cell count.   Even a short walk results in me slumping down on the couch for a nap.  I now also have balance problems when I walk.  It’s not so bad as to categorize me as a “Fall Risk” but it is frustrating to me.  I always had pretty good balance.  Now I find myself compensating by walking and standing with a wider gait to avoid tipping over.  It’s more of an annoyance than a real problem.  Believe me, there are problems that are much more serious than this one.
  8. I have a feeling of constant indigestion.  I have a constant feeling of indigestion.  I am sure it is the cornucopia of drugs I am taking.   They are keeping my stomach in turmoil.  Again, this is bothersome but I can handle it.
  9. I have frequent bouts of diarrhea.  One of the side effects of the anti-rejection drug Tacrolimus is that it flushes magnesium from your body.  Low magnesium levels can bring about seizures so stem cell transplant patients are given large amounts of oral magnesium oxide tablets.  The problem with oral magnesium is it causes diarrhea (think of drinking large doses of Milk of Magnesia every day).  The result is frequent runs (pardon the pun) to the bathroom after meals.  It’s an inconvenience but a manageable one.
  10. I have a greater appreciation for my wife, family, and friends.  One of the only benefits of having leukemia is that you learn very quickly who your real friends are.  My wife, Mary Pat, has interrupted her life and career for the past 6 1/2 months to spend 100% of her time caring for me.  There are no words I can use to describe how loving and devoted she has been.  My heart goes out to those folks who are going through leukemia treatments without a loving spouse or friend to keep them company and to watch after their needs.  I appreciate the willingness of both my brothers who volunteered to be stem cell donors.  Mr brother Mark was fortunately a complete match.  He gave up 10 days of his life and work to fly to Houston to receive Neupogen injections in his belly and to give “tiger blood” stem cells.  Kudos too to my sister-in-law Denise who was willing to loan Mark to us for that period of time.  I also appreciate my relatives and friends who offered words of encouragement, donated blood, offered to run errands, sat with me in the hospital, cooked meals, and took Mary Pat to dinner while I was in the hospital.  Many, many, many thanks to all of you.
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