Dying to Live, Living to Die — Part 2
I guess I should begin with my “story”. Hopefully it will help you understand and serve as a “warning sign” for others to not assume that symptoms are just run-of-the-mill.
I was progressively not feeling well as last summer went on. My usually high energy level was non-existent. I lost my appetite and in the process, 20 pounds. Nothing was appetizing or had any worthwhile taste to it and eating became a chore. I started to get “dizzy spells”, especially when I bent down to put on my pup’s leash or pet her on our daily walks. Those wonderful walks became laborious, as I struggled to catch my breath and they became shorter and shorter. I increasingly needed to rest, taking breaks (or “naps”) mid-day…something I didn’t even enjoy doing when I was in kindergarten so many years ago.
I kept hoping that these symptoms would go away in time, with enough rest, but they didn’t and only got worse. Finally, my husband insisted that I go to see his GP (mine had recently retired) and I relented. Understand that I am someone who has always powered-through symptoms that got in the way of what I wanted to do, of course frequently to my own detriment. Going to see a doctor was always a last resort for me, because I always had better things to do, not out of fear of test results…
But those results this time were what I initially saw as a death sentence. When I got the call to come in with my husband, I expected it was just to urge me to take care of an anemia, to which I have always been prone. Yes, I had a severe anemia, but it was a sign of something more that required further tests. The doctor (kind soul) assured us that it was probably just an aberration, but my blood had coagulated before they could complete the tests…it might be “multiple myeloma”, but they weren’t sure and he explained that he had seen “many people live with it.” He gave me a prescription to begin taking an iron supplement and a requisition for more bloodwork with an “urgent” written at the top. That was late on a Friday afternoon…
My husband and I went out to dinner afterwards, not that I was hungry, but somehow, I didn’t want what we had learned to follow us home, to “infect” the life that we had created together. As we awaited our meals, we began to research multiple myeloma and discovered that it wasn’t something “lived with” for long. The average life expectancy post-diagnosis was 29 months, 5 years if a person was “lucky”. Still in shock, we told ourselves that nothing was “written in stone” yet, more tests needed to be done and there were an endless number of other possibilities. But somehow, I knew there was something to it. I had never been the person to win the lottery but I guess I had this time, not in a good way.
I showed up for the additional bloodwork first thing the next morning and was told it didn’t matter if the doc had said “urgent”, it would take 2 business days (it was a Saturday and that meant no more news until the next Tuesday, if we were lucky). We didn’t get the call from my doctor until Wednesday morning, when he told us it looked to be Waldenstrom macroglobulinemia, a type of lymphoma that originates in the white blood cells. What happens is that the bone marrow produces too many abnormal white blood cells that end up crowding out the healthy blood cells (hence, the anemia). The “good news” was that it was slow-growing, and life expectancy was 5 years with the possibility of 10 or more. As the hematologist on my triage team later told me, the fact that I was healthy until the symptoms showed up and I was young (relative to the majority who were 70+) was a good sign.
This disease was so rare that only 1500 people a year in the U.S. and 400 in the UK are diagnosed in an average year, and most of them were 70+ year-old men. I was way off the radar in terms of the stats and projections and my “team” couldn’t even “stage” me. Of course, being an academic and researcher, along with my husband we scoured the web. The median (50% live to the age, 50% die before) life expectancy was 6 to 8 years. That was for the data from 2000 to 2010 and we anxiously awaited any updates, but more on that later…
I began the first of 6 monthly sessions of chemotherapy at the beginning of November, with the reminder that it was not a cure, but would relieve symptoms and was repeatable when symptoms returned, until it didn’t work anymore. There were other additional options when that happened and more were being developed all the time…Those 6 months would be followed by chemo every 3 months for an additional 2 years.
Anyways, that is the nuts-and-bolts of what has happened medically. I was very honestly in a state of shock at the beginning of all of this, which turned into every emotion you could ever begin to imagine. I vacillated from hope to despair (more of the latter in the beginning) as I grappled with what all this means. There are no stages to this emotional experience, just stages of the disease, this cancer that has now defined my life, but I won’t let it. It is not a “journey” as someone had suggested to me. A journey is something a person chooses to take. I did not choose this and find it offensive and trivializing for it to be described that way.
This is my life, moving forward, for better or worse…and I am trying to make it for the better.