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My Struggle with Leukemia

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By Jerry Croft, EdD – Patient

The Learning Period of my 50’s

The only time I remember hearing the word “Leukemia” was in a movie or in a book, with one exception.  That exception took place in my hometown of Anthony, KS, during the 1950’s and involved the 7- or 8-year-old-child of my town’s middle school principal, and of course, the little boy did not survive, so nearly every reference to “Leukemia” for me was that it killed you.

Imagine my surprise when one December day, I received a phone call from my doctor in Oklahoma to relay the results of my recent physical exam when near the end he said, “there is one more thing, Jerry. Your blood test indicates that you have leukemia.”  It was about dusk when I heard this, and I immediately sat on the floor of our Tulsa home trying to catch my breath, while attempting to be brave.  Looking back on this phone call, it was so wrong of this doctor to do this to me- never mind that there are several different types of leukemia, which I believe he must have known, but certainly he did not reassure me that my kind (CLL) rarely resulted in becoming a terminal illness. It should have been imperative that he schedule an appointment with me to break the news and to allow me to ask questions.  It would have been so much more humane had he instead said something like this, “Jerry, we did a routine blood test on you as part of your annual exam, and we discovered that you have this illness, and when I tell you what it is, it is going to scare you, but I want you to keep in mind that you have always told me you were a lucky guy, and believe me, you were very lucky this time because you have a blood disorder that is called “leukemia” but  is the kind of leukemia that rarely kills a person. You are only in your fifties, and you will likely be able to live out a normal life expectancy.  There are several different types of leukemia, and yours is called Chronic Lymphocytic Leukemia, or CLL. It is a very slow-moving blood cancer that many older men die from in their 70’s, sometimes never even knowing they had the illness.  So, it truly is not something that you should overly worry about at this stage, but I am ethically required to report my findings to you.”

The fact he said none of this to me leads me to believe that he did not see any reason to explain to me about the different types of leukemia before he called me at home one Saturday evening in December, just days before my birthday.  This was during a time when easy use of the Internet was rare, and we did not have laptops, so he could not easily keep up with best practices of notifying patients that they had been diagnosed with leukemia, nor could I simply learn more about the disease itself.

How did I learn about it?  I was getting ready to move to Iowa to join my wife who was on the faculty of the University of Iowa at a Center for Gifted Children.  One of the secretaries knew about the “Leukemia Support Group” at the University and kindly told me about its existence and why she thought it might help me.  I found out when and where the group met and and joined.  Because I am a lucky guy, this group was being led by one of the best people for something like this at the University, and this support group turned out to be the principal reason I was able to learn about the different kinds of leukemia and what my prognosis was.  The couple sitting close to me during my first session was my first encounter with one of the different types of leukemia, as she had CML, which can cause death. However, a doctor at the University of Oregon developed a “silver bullet” for CML, and this lady was part of the first trial group using the magic pill. It was just miraculous, the difference I saw in her between my first monthly meeting and my second meeting, as she looked like she might pass away soon at my first sight of her.  Yet by the second meeting, she looked to be in good health.. What a godsend that doctor created for that very nice couple in their mid-50’s; another chance at life.

Our group leader, Jan, was excellent at getting people in our support group to talk about their illnesses and also their fears.   I also remember a guy named Jim, who had recently undergone a bone marrow transplant.  He reported he was so weakened by the transplant that he was unable to do much of anything for over a year; then he began to recover. I wondered if I would have the courage to undergo a bone marrow transplant, not knowing that they seldom would give a patient one if he was older than 60, which was about my age at the time.

The Relatively Tranquil Period of my 60’s

The support group met at the University of Iowa Hospitals and Clinics (UIHC) on Thursdays at 4:00 pm for an hour. This was during my wife, Laurie’s, work day so she was seldom able to attend the meetings, and I was doing better emotionally.  We even joked about the leukemia saying things like- I was more likely to die from being run over by a truck than I was from the leukemia.  I was able to teach my classes in International Studies at the university without interruption until one weekend, I developed a fever and felt very sick.  I called Laurie and she immediately came home from her office and took me to the ER. It turned out that my hemoglobin level was 4.2 g/dL (normal being at least 13), so they put me into intensive care as a cardiology patient, as they were fearful that I might go into cardiac arrest with my hemoglobin so low.

I underwent a bone marrow biopsy (and later, two more of those rather painful incursions), and I stayed in the ICU for a couple of days.  Blood transfusions were only temporarily boosting my hemoglobin, so my hematologist, Dr. Donald Macfarlane, ordered me to have at least one blood transfusion a week so I could stay alive; meanwhile he would search for what was causing this anemia. This went on for months, and still I was not doing much better, but I continued to teach my two classes in International Studies (the “European Union” and “Developed Places Compared with Developing Ones”) as I felt they were good therapy for me.   Dr. Macfarlane was surprised when I told him that I was still teaching my classes, but I could tell he was pleased that I felt good enough to continue teaching.   I remember when he came over to the Infusion Center while I was having a transfusion and told me with a very worried face that he was afraid that perhaps I was one of the 3% of leukemia patients who had lost the ability to create new red blood cells; he arranged a meeting for me with the head of Bone Marrow Transplants.

When I arrived, I told the doctor that I had decided not to accept a bone marrow transplant as I had known a man who shared his experience with our support group, and because I was nearly 70 years old I did not want to give up a year of my life (thinking I was very brave).   Upon hearing my brave confession, the doctor simply said, “Well, you are too old for a bone marrow transplant, but we might have some help for you,” and then he pulled out a dozen charts he had developed about me that were most impressive, but unfortunately, I did not really understand them too well. Fortunately my wife was with me, and she did have some understanding of these charts and was very pleased.  This doctor and Dr. Macfarlane decided I should go on a drug named cyclosporine, because I was still producing red blood cells. My immune system was “killing the baby red blood cells,” as they explained it to us.  The results were amazing as the anti-rejection drug calmed my immune system and my hemoglobin jumped two points a week until they reached the normal range!  About midway through this experience, I remember asking my British doctor, “how could this be?” He just looked at me and said, “the lab probably made a mistake.”  I knew then that he was very much relieved and knew that I was on the road to recovery from my first serious bout with my CLL.

The Chaos Created by my Leukemia During my 70’s

Early in my 70s, my brother, Richie, and his wife, Wilda, came to see us for Thanksgiving.  We had so much fun showing them the Amanas, but by the time we were ready to eat Thanksgiving dinner, I didn’t feel well enough to even want my pumpkin pie.  They headed for Enid, OK, and we headed to the ER.  I was so relieved when the last doctor I saw asked about a small spot on my forehead and said she thought I might have shingles. That sounded like something that wasn’t a big problem.  Because of my lowered immunity, though, between both CLL and cyclosporine, I was hospitalized and taking morphine for the terrible pain for about a week.  I did miss a couple of my classes then, and Dr. Macfarlane said it was the worst case of shingles he had seen.

I was almost 75 years old when the biggest scare from my leukemia took place.   We had gone to Tulsa to celebrate Thanksgiving, but I had developed some very painful spots, like insect bites. By the day after Thanksgiving, they had spread so that I could not put on shoes or use my hands and fingers well.  My wife told a doctor at a Tulsa Urgent Care Center that she was worried about me losing the nail on my big toe, and because I had diabetes, the doctor was worried I might lose my toe.  She suggested hospitalization.  My wife asked if she could take me back home to go to our hospital, and when she admitted that the hospital was in Iowa City, almost nine hours away, it turned out the doctor from Tulsa had gone there for her undergraduate degree.  She agreed that we could drive straight to the ER in Iowa City, not even stopping at our house.

Doctors at UIHC were not sure what I had, and Infectious Disease specialists were doing various scans to investigate the possibilities.  As it turned out, I had a nasty case of Hand, Foot, and Mouth disease, (my lower legs were affected badly enough that dermatology asked me if they could publish some photos in one of their journals) just what the Tulsa doctor had tentatively diagnosed.  But when the results came back from one of the scans, they indicated I had several serious conditions, including bladder cancer.  After that pronouncement, things moved quickly along, and before I left the hospital, the leukemia doctor-on-call came to see me and told me that he was hoping that my CLL had masked what was actually wrong with me, as “CLL was well-known for playing tricks on your immune system,” as he put it.

I felt fine, and we proceeded with our Christmas plans to go to Tulsa to spend Christmas with my daughter, Anne Marie, in Laurie’s family home in Tulsa, when a few days before my birthday on the 19th of December, I got a call from a doctor at UIHC.  I can still easily recall her words: “We know two things: we know that this illness is NOT your CLL, and we know that you DO have bladder cancer, so as soon as you are back in Iowa, we will schedule more tests.”   This decreased some of my joy for my birthday and for this particular Christmas, but I remained hopeful as I had always been a lucky guy, and that knowledge was very important to me.  I returned to Iowa in January, and they did a bladder biopsy on me, planning to flood my bladder with chemotherapy after removing the tumor.

The results confounded their team as the surgeon told my wife after a very brief time in surgery, in almost an accusing manner, “He does not have bladder cancer!” Wowzers, we were happy, as the hematologist had been correct in that the CLL had masked what was wrong; the tumor was an artifact of the CLL.  However, the night of the biopsy nearly proved to be my last night, as I was having a lot of bleeding related to my catheter, and so again, we made a quick trip to the ER.  The doctors assumed we were seeing normal bleeding, but they were dismayed at the heavy bleeding I was experiencing, and a doctor spent the rest of the night saving my life by cleaning up the many blood clots and controlling the bleeding.  We were never sure why my CLL had given me a false positive on the bladder cancer test, but we were very happy it was not bladder cancer.

My next scare came when Trump was elected President of the USA, and I was left speechless the day he was inaugurated.   I remained unable to speak beyond a raspy whisper for several months.  I also developed a wheeze when I took a breath and when I exhaled.  When I went to see Dr. Macfarlane for a routine visit, he listened to that wheeze for less than a minute and immediately said he was going to get me in to Ear, Nose, & Throat (ENT) that day.  Within an hour, they did a scan on my throat and called the surgeon in to tell me they needed to do an emergency tracheotomy; she told me that “if I chose to go home, I might not be alive tomorrow, because there would be no possibility of later intubation.”  Of course, I said “yes”!!   Again Dr. Macfarlane had saved my life, just by being a brilliant doctor during a routine check-up with him. The tracheotomy turned things upside down for a while, requiring lots of treatments and equipment at home. My first night home, I awoke having a nightmare and had pulled the new trach completely out.  Another trip to the ER, but even the ER doctor wanted someone from ENT to replace it, since it was so new.  Eventually, though, I was able to have the tracheotomy reversed and now just have a small scar on my throat.

During my 70’s, Dr. Macfarlane began treating my CLL with ibrutinib, a wonder drug that had been developed for Mantle Cell Lymphoma but was found to be effective when blood tests showed CLL to be more active.  Unfortunately, although the ibrutinib was VERY effective for my CLL, I appeared to be one of the few unfortunate patients who developed pneumonia on that medication and couldn’t continue taking it.  I was in the hospital over and over in 2017, going in after my fever spiked, when I could not object to Laurie calling an ambulance.  At least once in ICU, when Laurie got there after following the ambulance in, the doctors in my room stepped out and told her she’d need to decide about things such as intubation and resuscitation.  They had asked me, they told her, and they thought I did not want either.  She told them she just wished she could ask Dr. Macfarlane for his advice, and they sent word to him.  He came down as they were moving me from the ER to the ICU.  He told Laurie he understood if I was tired of going through this, since I had developed a serious lung condition called bronchiectasis that required ongoing treatments, even at home.  She told him that it was just the OPPOSITE!  That I had plans to teach again, so even though I had signed a living will that indicated I did not want to be resuscitated, she felt as though I WOULD want that.  And he told her there was no reason I couldn’t do that.  In the ICU, they used a different kind of oxygen that gave me a higher percentage of pure oxygen, and I was able to go home yet again.

Perhaps because of a different medication I had started in July of 2017, I had a different scare.  Laurie was leaving for a conference in Australia, and while she finished getting ready, I fell while I was at Riverside with my daughters, Anne Marie and Jennifer.  With help, they got me into the car and took me to the ER, since I was in so much pain.  Anne Marie took Laurie to the airport after they assured Laurie they could take care of me; she called from Denver to learn that I had broken my hip.  She called from Los Angeles to learn that they would do surgery.  Her friend Toni was going to come by and check on me during the last couple of days of her trip, after both daughters had to leave, but since I was to have surgery in the hospital, that did not happen.  Laurie got home in time to bring me home from convalescing in a nursing home for a few days.  Although I used a wheelchair for a short time, I’ve been able to continue to get around with a cane, and then a walker.

One of the next really terrifying moments for my family occurred on Mother’s Day weekend in 2018. My older daughter, Jennifer, had flown in for Mother’s Day and came into my room for a visit the day before (Saturday) and reported to my wife that I was not making any sense.  Laurie came in to check on me and my fever had spiked to 104 degrees. I was largely unresponsive, so she called for an ambulance and off we went to the ER, yet again.

As it turns out, in addition to pneumonia, I had developed sepsis, which is a very bad infection, and when Jennifer saw one of the doctors treating me in the hospital, she asked if she should stay in Iowa or return to California where she lives, as she had planned on returning shortly after Mother’s Day.  She was greeted with “I do not expect him to live more than a few months.”   However, I did manage to survive, but the whole family was prepared for my imminent death- I was lucky once again.   I suspect part of my luck is due to the fact that I was an all-state athlete in both football and basketball as a boy in Kansas.  Any good athlete believes, “it is never over ’till the fat lady sings”, as Yogi Berra once famously stated.

The only other events that happened to me during my 70’s were that Dr. Macfarlane, and my new hematologist, Dr. Thomas Carter, both retired. I seemed to be doing well, so I was not too worried.

My Current Decade (my 80’s)

I will be 81 next December 19th (2020), so I only have a couple of things to report.  I am doing well, so someone else will have to report on anything that goes really wrong.   For my 80th birthday party, I elected to have my rather significant birthday in Stillwater, OK, where I had spent 25 years teaching geography and then becoming a professor emeritus of geography before I began my second career at the University of Iowa, where I taught classes in International Studies for an additional 18 years and encountered some fabulous students.  This birthday was special in several ways.  For me to have lived 80 years and survive the kind of medical situations that I have survived is nothing short of being amazing.  We had our dinner in the Hideaway Pizza place, which was my favorite place to have lunch during my teaching days at Oklahoma State University.  I did report that one of the sub-specialty areas of geography is the geography of medicine, and there is certainly a spatial variation of medical expertise, or I would not be alive today.

Another special event was that Jennifer, my older daughter, had just flown in from Stockholm, Sweden where the author she translates, Olga Tokarczuk, had just accepted the 2018 Nobel Prize for Literature (in 2018, Jennifer had won the Man Booker International Prize, awarded in London, for translating Olga’s book entitled, Flights).  Her husband, Boris, joined us in Tulsa.  My younger daughter, Anne Marie, who was a Make-A-Wish child when she was only 6 years of age due to a brain tumor and who remains the bravest person I have ever known, was there, much to my delight, as was my son, Jay. He has been a Junior High social science teacher for 25 years and I am also very proud of him.  In addition to Jay’s wife and my granddaughters, Emily and Katy, my nephew, Rick, was there.  I love him as one of my own children; he is a successful GM dealer and a farmer-rancher, and he was accompanied by his wife and two of his three daughters.  In addition, there were assorted friends and relatives all in attendance for my 80th “big birthday”.

The last thing to report is that my CLL did attack me this past summer but my new hematologist from Thailand, Dr. Sutamtewagul (Dr. “Sutam”) has placed me on some chemotherapy pills that I will take for a total of 2 years.  So far everything has gone exceptionally well.   I am very happy and grateful that I am still enjoying life and watching my wife, daughters, son, and nephew accomplish so much, which makes me even happier. I will be overjoyed if I can just see a President-Elect Biden take the oath of office this coming January.


Jerry Croft is Professor Emeritus of Cultural Geography at Oklahoma State University and has also taught for many years in International Studies at the University of Iowa and elsewhere. Born in Anthony, Kansas, he now resides in Tiffin, Iowa, with his wife.

 

Originally published in The CLL Society Tribune Q2 2021.