I’ve spent my entire life trying to find comfort and acceptance in my body. Since being diagnosed nine years ago with MS, the struggle increased. How do you accept a body that is breaking down? How do you live each day with a different muscle not working one moment to the next? How do you measure the impact of blurred vision, fatigue or brain fog? How do you mentally accept limitations while you yearn for what you used to be able to do? How do you present “fine” to the rest of the world so they don’t see you as different knowing you are wasting precious energy in doing so?
I struggle daily with how to accept where I’m at. And I’ve been really really bad at it. No amount of meditation or Zen thinking, yoga, massage therapy or exercise got me there, but chemotherapy did.
There is no shame in the human body, only humility. What our bodies can withstand, persevere through and come out from, is nothing short of miraculous. I am not my body. But my body is a part of me and its been put through the ringer the last two weeks and I feel humbled, grateful and hopeful for the future.
In order to jumpstart the harvest process and kick the bone marrow into overdrive to produce those beautiful stem cells, I received a Cytoxan priming infusion. I was given saline as well as several infusions of a drug to protect my bladder throughout the day. Chemotherapy is very hard on the bladder. According to chemocare, the timing of effects are as follows:
- Onset: 7 days
- Nadir: 10-14 days (Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.)
- Recovery: 21 days
Speaking from experience, that timing is precisely my experience thus far. My friend Maggie wrote about her observations from chemotherapy. If you’re squeamish… skip this next part.
A body in peril
When the nurse comes to administer chemo they are gowned up in full Hazmat-esque personal protective equipment (PPE) and it’s going IN MY VIENS. This lethal drug is doing exactly what it is supposed to with devastating consequences to the daily functions of the body.
From the moment the Cytoxan hit my blood and I went to use the restroom at Taussig, I was wobbly, shaky and unsteady to a degree far surpassing anything MS related. The first night home, I woke to use the restroom, stepped out of bed making my way to my master bathroom, and had zero control over my bladder. I’m an adult woman telling you I absolutely peed all over my bathroom floor. Despite anti-nausea medicine, I was throwing up for two days. Which had the bonus side effect of making Inspector Gadget (my central line catheter) bleed. I sent pictures to my transplant nurse and it was deemed a “normal amount of blood” given the pressure and force of vomiting.
Each day my legs became less and less useful. I wasn’t paralyzed, but whole muscle groups refused to work. Using my rollator, I was leaning heavily to try and swing my legs around to walk because I absolutely could not pull them through or lift a foot with any amount of dorsiflexion.
I gave myself two shots of Neupogen daily, designed to support my body and stem cell production. Unfortunately this causes bone pain, insomnia and a whole slew of other fun side effects. Luckily a daily dose of Claritin helps with bone pain of which I had throbbing skull pain and couldn’t sleep. I think stating I felt awful is a pretty accurate description. I was religious in taking all anti-nausea medicine and luckily only had two days of vomiting. I ate a lot of bland food – toast, bananas, chicken, rice and smoothies.
I have little to no cognitive issues due to MS. I worked the first two days following chemotherapy despite nausea and vomiting. But as things progressed my body was revolting and my mind was breaking down. I took the next six days off work to focus solely on managing life. You can read about my paralysis, 911 call and subsequent hospital admission to recover.
I’m not even a little bit ashamed to share the facts above. I hope others who are following in my HSCT footsteps can go in with a greater understanding of what may happen. The thing that is so damn frustrating about MS is it’s different for everyone. How it manifests, relapses, side effects and everything in between is a case-by-case scenario. The same goes for each person’s ability and mobility going into HSCT and how their body will respond to these mega drugs.
But more than wanting to help others, I am in awe of the human body. I want to share that message as well for anyone who is wasting one second of one day wishing their body looked differently. We are told to improve – be thinner, stronger, blonder, taller, better and that is all garbage. I was able to eat, sleep, get dressed, brush my teeth, eventually use the bathroom again all while my body was at war. Who the hell cares what color your hair is? I’ve spent nine years with an MS diagnosis hating MS, resenting my body and wishing I were “healthy” again. I strove to accept my decline in mobility with grace but I was raging on the inside. It wasn’t fair. Why me?
I’m done. That ends now.
I have a beautiful body with some faulty wiring that is still getting it done despite toxic chemicals, high stress and unprecedented strain. I’m over wishing for other. My body is a damn miracle full of wonder, perseverance and accommodation.
I breathe. I laugh. I cry. I struggle. But, finally I accept.