I was the key note speaker at the Jewish Hospital BMTU Reunion Dinner in 2011. This is pretty much my whole story.
I was the key note speaker at the Jewish Hospital BMTU Reunion Dinner in 2011. This is pretty much my whole story.
A week from today will be the five year anniversary of when I was diagnosed with Acute Promyleocytic Leukemia. I remember that Sunday very well. I had been battling what felt like a typical Cincinnati cold all week, but some of the symptoms were strange. For instance, I would wake up with a fever of 101 degrees, and it would go away by 10am. No big deal I thought, but it was very strange,. Since the fever was gone by 10am, I would get up and go to a full day of work. In 2007, I was a regular attendee of Climb Time of Blue Ash, an indoor rock climbing gym, on Thursday nights. Since I was feeling sick, I was very tempted not to go climbing that Thursday. I have a very distinct memory of thinking, “I’m probably going to take the next week off of climbing to get over this cold, so I had better make it to the gym tonight. I probably won’t get to go climbing again for a while. “ I arrived at Climb Time as usual, and by all accounts, I had a successful evening of bouldering. I even completed a rock climbing problem that I had been unable to finish for the prior three weeks. Perhaps my cold wasn’t a big deal after all.
After I was finished climbing and I was packing up to go home, I noticed something that was unusual. I had some strange bruising on both of my big toes. I had never seen anything like this before in the four years I had been climbing. For those that don’t know anything about rock climbing, climbers wear really tight shoes that are typically 2 to 3 sizes smaller than normal. This provides extra support to the feet and toes for standing on really small out crops of rock. Although the smaller shoe can be uncomfortable, it definitely aids in climbing more difficult surfaces, and typically, one doesn’t notice the discomfort when they are climbing. It was really out the ordinary to see bruising however. I thought nothing of it, and I went home and woke up for work after my fever had subsided at 10am the next day. I noticed that I was feeling a little more ragged and tired than usual. I figured it was a long week at work combined with great workout the previous night that was causing fatigue. Friday came and went.
Things started to get a little more concerning Saturday morning. I woke up with a fever that didn’t break at the normal 10am. I also had some more bruising that was on my legs, forearms, and face. I knew I was sick, but I really didn’t think I could be that sick. I thought to myself, “Perhaps I have pneumonia. I don’t have time for this. “ I contemplated how much work and rock climbing I might miss if it turned out to be pneumonia. My girlfriend started to become very concerned about my symptoms. A few years later, she told me the bruising on my body reminded her of the character played by Tom Hanks in the movie “Philadelphia.” She thought that I could possibly have AIDS. When my symptoms did not go away on Sunday, she called my mother and urged her to take me to see a doctor. Of course, my mom was very worried about my condition and agreed. I didn’t want to be bothered on the other hand. I figured I would just rest a little bit Sunday afternoon and that I be fine on Monday. I was starting to feel a little better anyways. After some coaxing, my mother convinced me that it would be best if I went to an urgent care just to get checked out. I agreed to go along with this idea.
We called the closest Urgent Care and described my symptoms. “It sounds like pneumonia, and we can’t diagnose that here because we don’t have an X-Ray machine. You should probably go to the emergency room, “the nurse on phone said. I really didn’t want to be bothered by a trip to the emergency room, and I was beginning to not like the idea of going to the doctor. I knew it would be a very expensive trip if I went to the emergency room, and the insurance at my new job hadn’t kicked in yet. Furthermore, I was convinced they would just send me home with a Z-Pack, some very strong flu medicine. Fearing the emergency room at Jewish Hospital would charge me an exorbitant amount for Tylenol; I even packed my own. With Tylenol in hand, I jumped in the car with mom and headed to Jewish Hospital.
For the first 2 hours at the emergency room, the first prognosis was that I had pneumonia, and I was going to be sent home with a Z-Pack and instructions to rest just like I had thought. I was in a very good mood and I didn’t think I was very sick at all. The hospital staff was amused that I insisted on taking my own Tylenol when they tried to prescribe it to me. Things seemed to be ok. Right as I was about to be discharged, my emergency room doctor asked me if I could be troubled to have one more test. She said, “Something doesn’t seem right, and I would like to do one more test. “ Being the cheap-ass that I am, my first response was, “is it expensive?” “No, but I think it is very important that we check.” From there, everything changed. When she ran the “inexpensive” test, it showed that my platelet count was only 5% of normal. More and more tests were ordered, and my heart began to sink into panic. After 2 hours after confirming the “inexpensive” test’s results, my ER doctor confronted me with some scary news. “Rick, you either have AIDS or Leukemia.” I thought for second, and then I asked “Which one is better?” “Well some forms of Leukemia are curable.” At I pumped my fists in the air, and exclaimed “GO LEUKEMIA.” It turns out that my ER doctor was a leukemia survivor herself, and she was concerned about the similarities of my symptoms and hers. My platelet count turned out to be so low that had she not recognized my symptoms, I probably would have died that night from spontaneous internal bleeding.
At 4PM on Saturday March 24th 2012, I found myself standing in Conference Room A at the Jewish hospital in front of about 25 soon to be BMTU (bone marrow transplant unit) nurses. I was there to give a patients’ perspective of a bone marrow transplant. I was invited to speak because I have had 2 bone marrow transplants from unrelated donors. I spoke for 30 minutes, and here is an excerpt of some of my presentation.
I relapsed for the first time in June 2008, and it was deemed medically necessary to perform a transplant from unrelated donor. This was due to the fact that I had a very aggressive Leukemia that was unresponsive to the standard protocol for treatment. Normally after first relapse, if a transplant is deemed necessary, the patient will be their own donor. Since it was very difficult to get me into remission the second time, and it was likely that an autologous transplant, a transplant with cells from the patient, would fail. My oncologist and I discussed his decision to give me a transplant with stem cells from an unrelated donor. In that discussion he said,
“If an autologous transplant fails, I will have to salvage you. Trust me; you do not want to be salvaged.”
I am not sure exactly what this means, but it didn’t sound good. Seriously, who wants to be salvaged?
In November 2008, I was lucky to receive a perfect match donation of stem cells from a thirty year old European man. Since I had been receiving chemotherapy for 4 months prior to the transplant, I was extremely worn out physically and emotionally. Fortuitously, the team of doctors at Jewish Hospital was able to get me into remission 4 weeks before the scheduled date for my transplant. I had 4 weeks to ready my body and mind for the transplant. I fully committed myself to training for this ordeal. I had to prepare mentally and physically for a potentially life ending procedure. I started by eating as much as I physically could in anticipation of major weight loss. I gained almost twenty pounds by eating 4000-6000 calories a day, primarily from UDF Homemade chocolate ice cream. I made sure to exercise as much as I could without wearing myself out too much. In order to train mentally, I tried to be as “normal” as possible. The weekend before my transplant I traveled to Columbus, Ohio to hang out with my best friend from college at a club called Vanity in Columbus, Ohio. That was my way of preparing mentally, and it worked.
I remember waking up the morning of transplant with butterflies in my stomach. I slept in a little, took a shower, ate breakfast, and said goodbye to my apartment in Hyde Park because surviving the transplant wasn’t 100% guaranteed. The Tuesday following my admittance was Election Day. I felt that it was very important that I vote, so I drove myself downtown to cast an early ballot for the presidential election. I waited in line outside in the cold an hour, voted, and then drove to the hospital. I was admitted to the hospital at noon on Friday, October 31, Halloween. I was so busy trying to get ready, that I decided that I didn’t have time to get a costume. I was proud to have voted possibly for the last time.
It was important to me to vote because health care policy is so important. Especially since my health insurance company, Anthem, denied my insurance claim to have my transplant at Jewish hospital. They decided that Jewish Hospital was “out of network.” If I wanted to have my transplant there, I had to be responsible for 50% of the cost. Ironically, Jewish Hospital was “in network,” for every other part of my treatment, but the transplant. Anthem wanted me to move to Columbus, Ohio, Lexington, Kentucky, or Indianapolis, Indiana in order to be “in network.” If I moved to any of these cities, I was required to stay there for 6 months. I would only be in the hospital for a month, so I would be responsible for my own accommodations for the other five months. Anthem was willing to offer me a paltry $14 a day stipend to cover all the costs associated with my living expenses including all meals. I told them to “take a hike.” Actually I used an alternate phrase that is more popular. I was too sick at the time to even check out the facilities that anthem suggested. I was forced to decide where I was going to have my transplant while in a hospital bed and extremely sick. I chose to accept financial responsibility for my transplant because I knew that if my support network was forcibly removed, I would surely die.
I walked in the front door of the hospital around12:20 pm on Halloween day. It was incredibly difficult emotionally to walk into the hospital on own accord. How would l leave the hospital when everything was over? Would it be on my own two feet or in a casket? I was ridiculous scary, but I wanted to live so I carried myself begrudgingly through the threshold. As soon as I walked in, I registered, signed financial obligation forms saying that I was responsible for 50% of the cost of the transplant, and then proceeded to eat the Wendy’s single combo that I snuck in with me. It was the best fast food meal, I have ever eaten.
I had no idea that the next 3 years would consist of 3 more relapses, another transplant, and 2 near fatal infections. Had I known that, I probably would have not have given up my potentially last Halloween. Over this time period, I endured one the hardest treatments that was ever administered by the Jewish Hospital BMTU. My treatment was so difficult several meetings were conducted to decide whether or not it was ethical to continue to treat me. Lucky for me, my oncologist had faith that I was strong enough to beat my disease, and he fought for me. One day, I distinctly heard him say outside my room. “Rick is strong enough to do this. I know he can get through this,” in very firm and defensive tone of voice.
I recalled the preceding Leukemia story as well as many others. I shared with my audience as much as I could remember. At the end of my presentation, I was joined in front of everybody by one of my nurse clinicians, Mary Alliston. She said to the future nurses, “During your time at the BMTU, you will hear many people say “it’s unethical to continue treating this person or that this treatment is too hard.” She then gestured at me and said,
“This is what happens when you don’t give up!“
I gave this talk in April 2013 at Tedx Cincinnati
This is my first post. I have a lot of work to do