Where did I go?

In December of 2019, I ended the year by boosting stem cells from my brother. 2019 was my first post-transplant year, and it was filled with many different infections, which frequently landed me in the hospital. I could not make or maintain my different blood components correctly, so I had to get transfusions a few times per week.

The boost worked wonders. 2020 started out great. I was getting stronger by the minute. I had been told when I started treatment for my cancer, a cure was possible. I previously had breast cancer. I was fortunate and caught it at a very early stage. After a lumpectomy and some radiation, I was pretty much back to normal. As if nothing had happened. So, when I was told I might be cured of Lymphoma, this is what I pictured. I got tired easily, but this was improving. I moved back to my house in Valparaiso because I thought I was over my constant medical appointments. I needed to be with my twins, who are seniors in HS this year. We went on our first vacation in three years in July. I was able to go on mile-long walks. I thought the medical nightmare was over, and it would be all uphill from here on out.

Then a few very unexpected things hit. The first was the pandemic. In terms of impacting my lifestyle, this was no big deal because I lived like this for most of the two previous years. When my blood counts were low, I had to spend weeks and weeks all by myself. I had to sanitize everything that came in the house and wear a mask… However, in terms of vulnerability, this was no good. Because I have a very young, dis-regulated immune system, I knew I would probably die if I caught Covid-19. I also knew if hospitals got too many people at once, and resources were limited, and hard choices had to be made, I would not be a priority because I did not have great odds to survive. After everything I had been through the last few years, I was damned if a pandemic would take me down, so I had to become extremely vigilant about sanitizing and isolating.

Then around August, I started noticing small physical and cognitive changes in myself. I started feeling worn out and getting frequent charlie horses. I was having trouble focusing, became forgetful, had trouble sleeping. Had a gut feeling something was very wrong. My labs and regular tests did not turn up anything. My doctor thought maybe I was depressed. After all, many people were feeling like this as they faced Covid. I didn’t think that was it. Because I was finally healthy and back with my kids. As it turns out, there is a special kind of depression that hits cancer survivors. It’s called survivorship. Survivorship is like postpartum depression. One can get very depressed even though you have made it to remission, and it should be a happy time. It is also like PTSD because you have been through something so traumatic but not processed it. When I was going through my cancer and transplant, I never really got depressed. Sad sometimes, but mostly I was in constant warrior mode, trying to figure out what I needed to do to stay alive. So that made some sense, but I didn’t think it was it. It did not matter for long because I was extremely rapidly declining daily once I hit the fall. By the end of September, I had a two-page long list of symptoms that got worse daily. They all related to my central nervous system. I got every test in the books. My team of specialists grew. I was seeing my stem cell doc, pulmonologists, neurologists, cardiologists, psychiatrists, memory specialists…. A lot was ruled out, but there is still no clear explanation of why I was rapidly declining to this day. I got to the point where I had to go back into a wheelchair;

I had to move onto the couch because I could not climb stairs, everything became difficult. It was hard to talk. I had to focus very hard to say each word. I sounded stilted. I had bad muscle spasms and would randomly bite my tongue and cheek all the time. I lost fine and gross motor control. It was challenging to write. I did not know how to spell things. I was forgetting how to shape my letters. I was very disoriented and overwhelmed. It was hard to complete any task. I constantly forgot what I was doing. It got to the point where I could not even chew and breathe at the same time. I had to switch back and forth. Some days I did not know what year it was. I would be absolutely sure I did something. I could remember doing it. For instance, I was sure I put gas in the car, then it would turn out I did not. On the other hand, I would think I had to do something like put a load of was on, and it would turn out I already had. I did not have an ah-ha moment, where I said to myself, that’s right, I did that. I had zero memory of doing and not doing things. It appeared I had a rapidly declining neuro-degenerative condition. This was extremely upsetting. With my cancer, I had a slim chance, but at least I had treatment options. Now I was looking at things that did not have a cure, like MS, Alzheimer’s, ALS… My grandmother had Alzheimer’s. I was throwing away forks in the garbage like her. I started having trouble breathing, and my muscles became weak. On Christmas eve, I was tested for Dementia. This is not how I wanted to go. I could no longer live independently. I started seeing a shrink. I got put on lots of drugs.

This January, I inexplicably started to get better. I still am extremely weak; I need a cane and can not walk or stand long. I am always out of breath, although my oxygen levels are fine. I feel like I am suffocating, and any physical exertions end with me sitting and gasping like a fish out of water. I have posted this song before, but I do feel like the air has become solid and I can not breath it in.

I have less working memory and my processing speed is slower. But I can think again, and I am no longer throwing out forks. I am glad I am better, but I wish I understood what happened and if it might happen again.I am having difficulty adjusting to my new reality. I know I am not alone. The pandemic has created a new reality for everyone. Normally I am extremely optimistic, and one of my strengths is my ability to adapt quickly when things do not go as planned. So why was I struggling now? I asked my shrink this, and he replied, saying I was in mourning. Hmm.
That is what I was feeling, but mourning what and how do I process this and move on? The word “cure” was a culprit in dissecting what was going on. By cure, my medical team meant still alive, able to have life experiences. I assumed “back to normal.” Normal is gone for me. I have to date, aged mentally and physically about 15 years. Those years where one can get out and do things more easily and be completely independent will not be coming back. I will need to always live near a major medical center, no cottage in the middle of nowhere on the beach for me. I need help with daily living. Right now, my sons provide that, but they will be out in the world soon. I am all for mindfulness, living in the present, but I can not make any goals at all, short or long term, because of my current medical condition.

I think I am a microcosm of what the whole world is going through with the pandemic. We are fractals. It’s as though the whole world has cancer. Everyone can not wait for things to go back to “normal” to be cured. However, the world has changed forever. People’s lives have changed. We have experienced societal trauma. Life will be different. Not necessarily in all bad ways, but different.

Continuing down my introspection spiral, I felt there was more I was mourning. I realized I missed my blood. Pretty strange right? I wondered if other people who had transplants felt this way.

In getting my stem cell transplant, my complete immune system, blood, bone marrow was destroyed, using very toxic chemo, and replaced by stem cells from my brother. I am a medical chimera, with two DNA’s, my original DNA in most of my body and my brother’s in my blood and immune system. Because a good match could not be found for me, I had to go with a haploidentical transplant. A half match. This meant I could expect problems. It also makes me feel like Frankenstein.

As though I am patched together from different parts that do not line up well, so they do not function optimally. I love my brother, and I am eternally grateful his donation has bought me more time. It’s weird for both of us, though. We share a lot, but we are also, by nature, pretty private people. So the thought of my blood is gone, and his swirling through my body into every nook and corner is disquietingly intimate. For him, I now know a major factor of him very completely. I recently found out if I take a DNA test on one of those ancestry sites, my results would come back as my brothers. Another part of me is gone. Who am I now? What is my identity?

Interestingly this brings me back to the very beginning of this blog. Equanimity. Losing even more control. Opening myself to adapt to a new lifestyle. Focusing on what I can do, not on what I can not. The hard part, completely letting go of all expectations for now. Big lessons for a control freak/planner like me.

As I do this, I have been apprehensive but also experiencing some happiness and joy. Hope. I have got on the pandemic bandwagon. We are cooking from scratch more. I re-started the succulent collection I used to have in CA.

I have intensely nested, re-decorated, and personalized my home, not making art yet, but baby-stepping with craft projects.

I put art up. I got my camera and microscope out. We are adopting a kitten.

I am doing lots and lots of networking. For work, I have made a new role for myself, marketing and building social media platforms. This allows me to work as I am able. Socially, I have joined a progressive group of ladies and become active in my community, promoting positive change. So I have entered my community, which is new. I am inspired by Freida Kahlo. She spent many long months in the hospital, and she found a way to make an easel that fit in her hospital bed so she could continue to paint.

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So, friends, I know many of you are right there with me or will be soon. Taking it one day at a time. I remain optimistic. With the right mindset, different does not have to be bad.

I’ll end with another source of inspiration for me.

A song by Leonard Cohen:
“Ring the bells that still can ring.
Forget your perfect offering.
There is a crack in everything.
That is how the light gets in.”