Two Years & Counting

Today is the second anniversary of the stem cell transplant I received. People in the medical and patient communities refer to the date of the transplant as a “new birthday.” I never quite cottoned to that idea, partially because I like the birthday I have already! I tried to see it from their perspective but after much reflection today, recalling as much as I can of what happened in late September 2015, I’ve come to a different understanding that speaks more truly to me. September 28, 2015 was a day of rebirth as the intentions of the actions taken that day were to retrieve my body quite literally from the brink of death.

When I was admitted to the hospital on September 25, 2015, it was to undergo a voluntary procedure of being given high dose chemotherapy intended to destroy my bone marrow in preparation for the transplant. The chemotherapy used is a derivative of mustard gas, no less. I agreed to be poisoned in order to live longer, hopefully in remission. In preparation for the transplant (ASCT), I first received 5-6 months of induction therapy, i.e., chemotherapy given to reduce the tumor burden. Because of the toxicity of even those first drugs, it is preferred that less than six months of induction therapy be given as it will weaken the stem cells that will eventually be harvested for the transplant. I was exhausted by the twice-weekly infusions that never quite got me into even a temporary remission before the ASCT.

As explained in earlier posts, my own stem cells were harvested from my bone marrow, cleansed of the cancer cells (hopefully) in them as they could not be subjected to the high dose chemotherapy meant to kill everything in my bone marrow. My harvested stem cells were preserved and stored for the transplant and, since there were enough left over, maybe future treatments requiring stem cells but not a transplant (in my case, due to my early relapse, I am ineligible for a second transplant).

The day of the high dose procedure, my daughter, son, and sister accompanied me. Because of the toxic drugs being used, the medical team wore HAZMAT outfits: heavy yellow rubber gowns, Plexiglas masks, heavy-duty rubber gloves and shoes. My family watched and wondered why, if it was all so toxic, neither they nor I were protected, but I think it was the handling of the drug that was most hazardous if there was a spill. For my part, I was told to chew on ice chips and suck on Italian ice pops for the entire time before and during in order to minimize the side effects to my mouth and entire gastrointestinal tract. It was hard to ice down my mouth for as long as I did, at least 60-90 minutes and even then I did not avoid the more severe side effects.  The high dose chemotherapy essentially burns and destroys many, many cells, not just the bad guys.

When the infusion was completed, and my numbed mouth felt normal, we all had nothing else to do but wait. Over the next three days my bone marrow would be completely obliterated, my immune system wiped out, my body left vulnerable and unable to make new blood cells, white cells, or anything else having to do with the bone marrow “factory.” There were three more days in which it was hoped most of the heavy chemo would have been metabolized out of my body and not interfere with the next step of the actual transplant. But, before the terrible becomes irreversible, the “healthy” stem cells need to be returned to set up their respective functions in the matrix of bone marrow that has now been effectively burned out so that a new immune system can be rebuilt quickly enough to stave off any disastrous consequences. I don’t remember how many tubes and IV poles were attached to me, but I had been reassured that potent antibiotics were onboard to prevent any life-threatening infections, the most serious complications of all that could lead to death, along with not having enough red blood cells, etc., etc. Steroids and fluids and who know what else were pumped into all the ports implanted in my body for these purposes. Fevers were monitored, as was everything that went in and out of my body.

The worst part of this process comes on about 5-7 days afterward and one can feel all kinds of terrible. I have a photo of me then, probably on one of the 3-5 days before the worst effects began to be felt. In it I still have hair, although it was already dying, and my skin tone is grey. The transfused stem cells, i.e., the actual transplant, need time to engraft in their familiar environment and begin functioning. Somewhere in those days I had several blood transfusions to replace blood cells that were too low or non-existent, but needed. And then I had a type of reaction that created excruciating pain in my GI tract whenever I swallowed. I remember telling my doctor it felt like I was swallowing big rocks that got stuck on the way down followed by another pain that felt like a sword slicing me in two from right to left that made me afraid to eat, drink, and swallow. At that point I believe I was given some fairly strong pain medications (something I only learned after reading my hospital notes a year later) and there are a number of days I don’t remember at all. Unfortunately, for my children, it was a harrowing experience and they remember much that I cannot and they worried mightily when they saw or heard me in that void I entered with the pain meds.

I was in the hospital three weeks and the last half was more tolerable than the first.

But, I had not been warned that the impact of the steroids would be to make it impossible for me to see/focus to read or write. This continued for weeks after I got home. The other side effect was the enormous amount of fluid pumped into me eventually made me feel and look like Jabba the Hutt on my discharge date; I lost 20 pounds of fluid over the next 3-4 days! I was weak, bald (but not really bothered by the baldness except to keep my head warm at night). Once at home I stayed in bed a lot the first weeks, barely able to drag myself up and down the stairs. Food tasted “not good” and this included coffee, my habit for at least 50 years. I ate rice, chicken broth, yogurt, and applesauce. I took 40-50 pills every day, hating every minute of that maneuver but knowing I had to do it. And, I experienced several weeks of the most terrifying nightmares I could imagine, strange but frightening enough that I began to dread going to sleep. Because I couldn’t see to write, I tried recording some of the details and thoughts I had then.

Eventually, I was able to push past the first few weeks of extreme weakness and begin taking small walks outside, even if only for a block. And, I had a protein drink I made every day that I believe made the biggest difference in my nutrition by literally feeding all the parts of my body trying to heal. It is plant-based and contains many substances that I knew were important building blocks for my blood cells. I mixed it with milk alternatives (almond, hemp; can’t do soy), frozen fruit, and chia seeds. I am convinced that when the doctor marveled at how well and quickly my blood values recovered it was due to this nutritional “medicine” I gave myself (and still do take).

So, what is the purpose of this long post recalling so much detail about what occurred two years ago? Some of what I’ve said is probably repetitive but not much. Today I needed to spend time alone in thinking very carefully about what I could recall because so much of what I want to recall is still lost to me. And, there is more going forward that is relevant to today, too. Last week I got the results of my annual cancer re-staging to see what’s really going on after 22 months of rigorous treatment. Since I did not achieve a remission with the ASCT and relapsed within a few months, all negatives for me then, I was put on a newly approved drug and regimen of oral three drug therapy at the end of 2015 in what was called “salvage” therapy. I have responded well to this treatment and although it is still considered salvage therapy and not maintenance therapy, I have achieved the strongest possible remission to date. Remission is not cure but it does mean a longer time without active disease. It is now possible that maybe, just maybe, I will be able to discontinue this salvage therapy at the next re-staging in the fall of 2018 and just be followed closely.

A reprieve from taking drugs is my fervent wish because the very drugs that keep the cancer at bay also have suppressed my immune system to the point of being extremely compromised. My goal is to rebuild my immune system healthily and with support from other forms of health care that I also believe in, too. I could throw some caution to the winds and just stop now, but the risk makes me hesitate. Although there is not yet a cure for myeloma, getting a long-term remission with little to no evidence of disease is what we are looking for in the coming year. I am changed in many ways by what happened and one of the thoughts I have come to is that the only way I got through most of the past two years was by staying as calm as I could, reading and researching on my own, weighing my choices with my own inner wisdom to come to the choices I made. In order to do the things I did, regardless of whether I was scared, in pain, or just a mess on any given day of treatment that didn’t go well, I had to push away/down a lot. And now, two years later, I realize more and more that a lot what was pushed away is now up for acknowledgement, too.

I truly believe that the entire experience was traumatic, deeply traumatic to my physical being in particular. I believe that I did, indeed, venture to the underworld in those days I cannot remember and that the nightmares were my psyche’s memory of the fear of dying that lurked, always, even if I willed it away as “not likely.” Today is strange because I feel what is sometimes called an “anniversary reaction” and it was not expected. Maybe now is the signal for me to begin writing the poems or prose that I kept track of with those notes and recordings. It is not writing I will post here because I envision this as part of a manuscript. I have much to say and need to say, even if only to myself. Thank you for listening today because I am alone, away from the ones, my children, whom I wish could talk to me about what they saw and felt. It was scary for them and some of what they’ve shared with me tells me more needs to be shared between us.

Today marks a rebirth, not a birthday. In the oldest stories, heroes and heroines go down to the underworld, even die, and once they have completed whatever task sent them there, they are resurrected, reborn, restored to the world and themselves. At least if they are successful in their journey. I was and am strong enough to have literally given birth to myself again through my own body’s cells and strength. I am grateful. I am sometimes sad. I am changed forever and still adapting. Aren’t we all, whatever our task, our heroic moment, our ability to keep standing even if dragged unwillingly into a new life?

 

 

 

 

2 thoughts on “Two Years & Counting

  1. Dearest Linda ,
    It does mark a rebirth and I believe worth remembering the details and sharing them. It’s difficult to imagine how we will get through traumatic experiences ; we just somehow do. Remembering recalls what a heroine you are, what bravery you found in the depths of who you are… to honor yourself for that bravery. Fear doesn’t leave us. Bravery is when we are scared / fearful but we do things scared.
    You continue to be a role model of love and resilience and patience and kindness for me ,
    I love you, Deb

  2. To revisit your journey with this perspective is powerful stuff.i remain amazed by what you have been through and that you are still standing for this rebirth. What a spirit you are. Whoever that new person be I honor her.
    Love and admiration,
    Maria

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