We must accept finite disappointment, but never lose infinite hope.”Martin luther king jr.
Hoping for a Stem Cell Transplant
One of the major plans I’ve had for the Sick With Optimism Blog has been to record my real-time journey, and perhaps vlog, through a stem cell transplant.
Late in 2017 when I had my life-threatening Scleroderma flare, my husband did a great deal of research into this disease on my behalf. Scleroderma is a rare autoimmune disease, which is difficult to diagnose and predict. It presents itself in very different ways for different people, some only as skin issues, others with GI, Lung and in my case, kidney and cardiac complications. Unfortunately, there is no known cure for scleroderma, simply treatment of symptoms and drugs to try to suppress the out of control immune system.
My husband discovered that in Canada there are stem cell transplants trials going on for scleroderma patients. Stem cell transplants are more common in other places in the world for the treatment of scleroderma, but relatively new here in Canada. No donors are required as these are auto-transplants where the stem cells are cultivated and harvested from the individual who will be receiving them. The process is similar to treatment for blood cancers such as leukemia; after harvesting stem cells the immune system is destroyed through chemotherapy and then the stem cells are reintroduced. To us it sounded scary but hopeful, like a factory reset on my glitchy smartphone seems to restore all of its original functionality, I hoped a stem cell transplant might do this same for me!
To my knowledge, there are two hospitals in Canada offering this treatment at present serving patients in Western Canada in Calgary and Eastern Canada in Ottawa. Oddly enough, the Apheresis clinic at Toronto General Hospital that I attend twice weekly for plasma exchange does the harvesting of stem cells for the Cancer hospital across the street, Princess Margaret (one of the top 5 cancer hospitals in the world). Unfortunately for autoimmune disease sufferers, however, for the most part Princess Margaret only serves those with cancer – which of course makes sense, but logistically, a bit of a pain to have to travel across the province when the treatment is offered so close to home.
Shortly after being released from hospital in January 2018 I visited my rheumatologist at the Toronto Scleroderma Clinic associated with Mount Sinai hospital and the University of Toronto. I asked if they would put my case forward to the Ottawa hospital for consideration in their stem cell transplant program. At the time I was on dialysis and twice weekly plasma exchange but my heart was recovered since my stay in hospital. Upon my return visit to the clinic I received the news – quickly and soundly – rejected. Apparently I was too sick at the time, therefore, the risk of death was too great. I thought it a bit strange, a stem cell transplant seemed like a difficult experience, one which you would need to be pretty sick to undertake! That being said, there was hope that my condition with treatment could continue to improve, I remained optimistic that I could apply again should my situation get better.
My optimism did not fail me as my health did haltingly, in a two-steps forward, one-step back dance routine, begin to improve. My rheumatologist agreed to once again present my case for stem cell transplant. She cautioned me not to get my hopes up, but I threw that caution to the wind! After all, had my optimism over these many months of illness not borne fruit? I was filled with hope that this grim and unpredictable illness could be held at bay; I fantasized that perhaps my life would return to normal, no more twice-weekly trips to the hospital for treatment, fewer tests and appointments! I could return to work, travel, maybe get that badly needed new car with my improved finances!!
This time the hospital’s response took longer, I was in a hurry to get the transplant now, before things flared up again from the scleroderma, I wanted this taken care of. When I followed up with my rheumatologist she was good enough to reach out to the clinic for me. I received a call from my doctor that they would be having me go out to Ottawa for evaluation, but not to get my hopes up too high. I was thrilled! I knew if they saw me they would be sure I was strong enough to endure the procedure! My prayers were answered, or just about!!
I waited to hear about my appointment date, hours turned to days, turned to weeks… then I received the call from my rheumatologist, I had been rejected AGAIN! I protested, “But they haven’t even seen me yet!”. My doc was as confused as I was so she sent them a message to clarify. A couple more weeks went by and good news, they would meet with me, but again. I was not to get my hopes up because it was highly unlikely I would be accepted into the program.
What did I hear? There is a shred of hope!! I was optimistic that my stem cell transplant was around the corner! I consciously put off making plans and decisions in other areas until I found out more when my appointment would be and about the transplant itself.
I see my hematologists twice per week in the Apherisis clinic for plasma exchange, these are the doctors I see most of all. Discussing the mixed-messages we were receiving with respect to the stem cell transplant with one of them, he let me know he had connections in Ottawa and he would try contacting them to find out what exactly was going on. I was enthused! I hoped my hematologist would get to the bottom of things and looked forward to an appointment in Ottawa very soon. Friday at my plasma exchange treatment my doctor had an update. He had spoken to two contacts he had at the hospital and finally spoke to the doctor in charge of the study. A visit to the clinic in Ottawa would only be to explain to me why I was not a candidate for stem cell transplant. A courtesy more or less as I had been so determined. As it turns out, this experimental procedure has not been proven to be effective, it is deemed to be neither a cure nor is it a guarantee to restore lost function – though reports in the media indicated they have had success, it seems that in reality results vary. To be fair, I knew there were no guarantees.
As I mentioned above, Scleroderma presents very differently in different patients – some have only skin involvement, some don’t have any but instead have GI issues; the disease can damage a variety of organs and systems, including lungs, heart and kidneys. This study is focused on clients with skin and lung involvement. It turns out patients, like me, with thrombotic microangiopathy (TMA) have an unacceptable mortality rate from stem cell transplant; even if I wanted to take that risk (which they wouldn’t permit of course) there was a further risk that the transplant could actually cause an autoimmune response which could make my disease even worse.
There Go My Hopes and Dreams…
Speaking to my doctor I tried, as best I could, sitting in my treatment chair, to be stoic and ask the logical questions. The doctor, who had sat down close to me so he could speak to me eye to eye, encouraged me that there was always new research happening. He wouldn’t confirm my life expectancy without the stem cell transplant as that would be the rheumatologist’s area of expertise.
As soon as the doctor left all I could think was “Well, that’s it, it’s hopeless… I’m never getting better. I will be in this chair twice a week for as long as I live, however long or short that might be.” I feared that the improvements I had experienced over the last year would be lost with the next flare. I felt despair, as if I was being sucked into a deep hole, “This is what hopelessness feels like,” I thought to myself as tears stung both my eyes. I tried to blink them away but they just came out anyway, great big wet tears falling from my face to my chest, exposed as it was accessing my line for plasma exchange. I rummaged for a tissue in my purse and quickly wiped them away before anyone else in the busy room could see my hope deserting me; It is a busy room with six treatment chairs, each with at least one RN attending – lots of people with whom I was not willing to share my raw, hopeless despair, particularly knowing I would be returning again on Monday and for as far in the future as I could see.
Wait, What Am I Doing?
I was feeling more than just sorry for myself, I had not realized how much I was counting on that stem cell transplant. What do I do now, I wondered? I was not comfortable at all, and only a few times in my life had felt such utter hopelessness. Then I said to myself, “Wait! What am I doing? This is not how I have been approaching my illness.” Was I a fraud? Had optimism failed this hurdle?
It was then I had my epiphany, this is disappointment (albeit a major one)… it only becomes hopelessness if I let it. I began asking myself, if all hope was truly gone from me? The answer came slowly, but definitely, NO. I could still hope for remission, I could hope for different treatments and new drug therapies, I could hope for acceptance of this reality and the ability to move on from this disappointment. I could remain optimistic and grateful for the life I have now. Grateful to have access to the apheresis clinic, grateful that I’m feeling a little better, grateful that my doctors have taken the time to look into this treatment and rule it out for me, grateful for family and friends, and the sun shining outside the window. The next day I manifested my gratitude in an email to my doctor, thanking him for taking the time in his exceedingly busy schedule to make the calls to the other clinic for me, for taking the time to ensure I understood and for always taking such great care of me. These thoughts and actions rapidly lifted me from my hopelessness and despair.
In the quote above from Martin Luther King Jr., he states that disappointment is finite – it is limited and measurable; it is one thing, not everything. Hope, however, is infinite – it knows no boundaries. Hopelessness feels like a pit that you can’t get yourself out of, but I feel that if we could recognize that disappointment is not hopelessness, the pit shrinks to something more like a gap that, with hope, we can leap over (or at least crawl through). Hope is that light in the darkness, sometimes hard to find at first. If you are struggling to find hope, maybe begin with gratitude, I do find that easier sometimes. For me gratitude can be a lifeline out of the darkness or the pit, that brings me to the light of hope and optimism. If you catch sight of it, hold on! I did this by repeating my story as often as I could over the next couple of days… “I thought it was hopelessness, but I realized it was just disappointment!” I said it over and over, to my family, friends, nurses, even just myself. These positive affirmations helped, and I was a little amazed how quickly I began to recover from my bitter disappointment.
What If I Can’t Find Hope?
I recently visited the U.S. Department of Health & Human Services website. They provide a list of “Ways to maintain positive mental health” Some of these included: Getting professional help if you need it, connecting with others, staying positive, helping others, and a variety of other strategies and resources you can check out on their website (U.S. Department of Health & Human Services, https://www.mentalhealth.gov/basics/what-is-mental-health?, 04/05/2019). I recognized some of these as strategies which I had employed. Staying positive is, of course, easier said than done. From my experience it doesn’t just happen, it requires a conscientious effort. If you just cannot find hope or stay positive, if you cannot implement the other strategies they suggest to help then it makes a lot of sense to seek professional help. On the subway ride home from the hospital today I noticed an ad for http://www.BigWhiteWall.ca which is an anonymous, online mental health service, free to residents of Ontario, Canada which is funded by the Ontario Ministry of Health and Long-Term care. There is also a link for the UK version of the site on the home page. So help is out there, ask your doctor to refer you to a professional or help you find resources in your community.