I am thrilled because I have already written two articles for AAMDS and am now writing a third one at their request. I am so grateful to still be well enough to do this.
The first article, written in 2017, talked about my initial diagnosis in 2010 of MDS del5Q. MDS is separated into 5 categories and typically patients live the longest with this extremely rare type.
I had a very insensitive oncologist who told me, right after the diagnosis, that the average life span was 104 months. I was still grappling with the cancer news! I switched to another oncologist who saved my life repeatedly. She performed 18 bone marrow biopsies to keep on top of the cancer. I first was put on the oral drug Revlimid for 5 years. I didn’t realize how powerful this little daily pill was and it caused me to lose even more of my hearing. I already had a severe hearing loss, which dropped to profound. It also caused me to have diarrhea every single day.
When the blast counts began to increase, my oncologist caught it, concerned it would slip into leukemia. I was then placed on Vidaza shots for two years. These consisted of two shots in the stomach for five days, caused unbelievable fatigue, and I had to alter my life. I quit teaching part time and slept all the time. When my stomach started swelling, I was put back on Revlimid for two more years until I could no longer tolerate the side effects. My specialist then made a brilliant move. She prescribed weekly shots of Procrit then switched to a cheaper drug called Retacrit for my red blood cell count. I was given Zarxio shots for my white blood count. Meanwhile, I was losing an alarming number of teeth that cracked and had to be pulled. This meant I could no longer eat many foods. I was on medication for esophagitis and ulcerations in my stomach. I experienced muscle aches that prohibited long walks because the blood was slow in getting to my extremities.
But I was alive and thankful.
Life turned upside down for all of us when COVID-19 hit. I continued to go to the cancer center weekly for the shots. The hospital was deserted with everything closed from the coffee shops to the gift shops. I would not see anyone in the halls at all. The cancer center was deserted because many patients refused to come with the fear of catching COVID. During this time, I became extremely close to the nurses since there were so few of us patients. I watched their sadness --- they worried they would lose patients from not getting treatments for their cancer. I heard their stories about their spouses watching the children so the nurses could do such an essential job. I learned about their families and how much they cared about us. How I admired these heroes who sacrificed everything to continue to help us!
The biggest downside for me was the necessity for masks. I certainly understood how imperative they were, but this took away communication for me. I could not lip-read and was constantly frustrated. I tried to be a problem solver and friends offered to make masks with windows at the lips for me to take to the hospital. The hospital was not permitted to use these, but then they found a company to order them from that was acceptable. The funny thing was other nurses from other floors found out and kept swiping them so there would not be one for me! I dryly suggested they buy some more, and they eventually did. I also found a “Live Transcribe” on my phone which was a free app that did real time captioning of every conversation. I still use that one today.
I was on the Patient Advisory Committee to give input for the new Cancer Center to be built. The construction came to a screeching halt for awhile. However, the committee still met on Zoom to decide on paintings and artwork for when the building resumed for the center. How dedicated our hospital employees are since they worked on this nonstop throughout the lockdowns.
My hemoglobin dropped precipitously in 2019 so my doctor referred me to a hematology/oncology/MDS specialist at the Cleveland Clinic. He told me about a new treatment coming on the horizon called Luspatercept (Reblozyl). This drug was to be approved in 2020. It was to be used for transfusion dependent patients. The way this one worked is by increasing the number and quality of the red blood cells and is in the class of erythroid maturation agents. I lost 5 more teeth in 2019 and could not have implants because of the cancer. I did not know if I would be eligible for Luspatercept and if it would work.
However, I continued getting weekly shots and I had a weapon in my arsenal – hope. As a country, we started gradually coming out of the pandemic and were able to go places and travel. Then in January of 2022, my world turned upside down. I had blood work done and a bone marrow biopsy that was not good. My specialist moved away so my doctor referred me to another hematology/oncology/MDS specialist. This brilliant, compassionate and well-known doctor impressed me immediately. AND she is a huge promoter and writer for AAMDSIF! She gently informed me I had two serious variants. I had a good idea of what this meant because I had been hearing about the variants of COVID getting stronger and attacking us, which is why we have to have updated vaccines. The original cancer was under control, but even more powerful variants reared their ugly heads. The specialist told me these would kill me in the next couple of years unless I had a bone marrow transplant. My sister was with me, and we asked many questions. This would be the only cure for me. However, at age 72 I was concerned about having one at that age. The transplant had a 50% chance of working but she reassured me I could have a second one.
Cleveland Clinic started a dizzying set of appointments testing me for a donor, having me talk to the head of the bone marrow transplant unit, and setting me up with a support group. When they told me I would have to have someone with me 24/7 for three months and then there would be a year of recovery, I explained I lived by myself. I have friends who would help but this was a stretch. The side effects were brutal which was also scary.
Through all this I lost Sita, my beloved hearing ear dog that I had for 14 years, at the age of 17. We were inseparable and had traveled all over the state and country. I had written two books about her and she was my companion and friend – not just a dog. I was heartsick.
Then my doctor at home broke the news that she was moving to Florida. We were extremely close, and I was feeling overwhelmed with loss and grief and didn’t know what to do.
My doctor suggested a second opinion and I went to Case Western Reserve University Medical Center. The oncologist there was wonderful. She was also brutally honest. She cautioned me that I had more like a 35% chance of the transplant working and could die in the process because of the IGA immune deficiency I have had since birth. My current clinic had told me the Bone Marrow Transplant would cure the deficiency, but the process was riskier than I envisioned. This doctor had been in residency with my previous doctor and said the shots were a brilliant move on her part.
I went back to the specialist at the Cleveland Clinic and told her I did not want her to be mad, but I was not going to have the transplant. She respected my decision but again cautioned me I may not live long. I told her life was a crap shoot and I was rolling my dice.
We then decided to start the Luspatercept. This is not chemo and what a difference! There are few side effects and the diarrhea, muscle aches, and some of the fatigue are gone. (All blood cancer patients have fatigue because of our lower red and white blood cell counts.) My specialist also told me there was a clinical trial where they gave patients the Retacrit and Zarxio shots for several weeks before they administered the Luspatercept. I was not eligible because my previous doctor had already done it. WOW – she was so ahead of the game!
I was very nervous about starting a new treatment that had been approved so recently but jumped in. I have had two wonderful years since then. My talented dentist invented a set of bite plates with artificial teeth, so I do not keep wearing down the remaining ones and it is working beautifully.
Two months after losing Sita, the agency I got her from gave me an adorable Jack Russell/American Eskimo/Pomeranian and Beagle mix. She does not go out in public because of a leg that gave way, but she alerts me at home and we go all over to coffee shops and places that allow dogs and do programs. She is mischievous and full of joy.
The oncologist who replaced my former doctor at home sees me monthly. He keeps in touch with the specialist from the Cleveland Clinic and they work very well together. Becoming close to my specialist at the Clinic helps with the loss of my long-time doctor at home. We both love writing and talk about that when we see each other. I go in monthly for two shots in the stomach of the Luspatercept and still see my nurse friends. I love looking at all the paintings and decorations at the wonderful, beautiful, spacious new cancer center. I think of the people who worked with me and passed on and feel their spirits there. I still am in touch with my previous doctor since email is a wonderful thing. The nurses tell me that only one other patient has been coming to the center as long as I have and I tell them I feel blessed every single day.
I have two messages here. Always get a second opinion with a huge procedure like a bone marrow transplant. I realize that the Luspatercept does not work for everyone and I have friends who have had much success with the transplants. Each one of us is different and we need to make informed decisions. It is useless to go back but just move forward.
The second message is to never give up hope. My specialist tells me there is still another treatment on the horizon if Luspatercept stops working. We are so lucky to be living today with the fantastic researchers, doctors, and nurses who dedicate their lives to helping us.
Sometimes I wonder why any of us cancer survivors have to go through what we do. One of my favorite authors is Louise Penny, the mystery writer. In her book A Fatal Grace, she tells about an artist who makes sure a crack is in every painting she does. The poet Leonard Cohen has the following poem:
Ring the bells that still may ring
Forget your perfect offering
There’s a crack in everything
That’s how the light gets in
A crack is the way a light gets in. We all have the crack of cancer and maybe we are the light for others as we go about our journeys.