As the days get shorter and I am farther away from day 0 (aka transplant day), I realize there are less major milestones to share. I want to keep writing and updating but don’t always feel that life constitutes a blog post. But maybe the writing and the sharing is in the banality of it all? I’m trying each day to get through the day. Short and sweet, that’s what it comes down to.
I’m learning to do things alone. I’m learning to ask for help and diversify my requests for assistance. When I fall, I’m learning how to get up (physically and metaphorically). I do things scared because otherwise, I wouldn’t do things at all. I’m constantly advocating for what I think I need from my family, friends and medical team. I’m reminded, over and over again, how new this treatment is and to work with my care team. They are my partners and I need to be ok with the fact that we don’t have the answers, so we better work together.
Healing is non-linear and I remind myself daily of my wins, big or small, and the fact that this is a looooooooong process. What my transplant nurse told me at the beginning still holds true today: measure progress week over week, not day by day. After a good day, two or three bad days still usually follow.
Neurological check in and check up
I met with my neurologist and his fellow last week through a virtual visit. It’s an ongoing theme between me and my medical team that I want to be better immediately and running and doing cartwheels and they want me to relax, be patient, and let my body heal. I don’t take offense to this feedback. If anything, it reminds me just how hard the last few months have been and that I have not even reached six months post transplant (the next major milestone).
My bloodwork looks great. My MRI was normal with no new or active disease activity. These are good things, but you guessed it, I want more. My neurology and oncology doctors think I’m doing great and continually remind me this is brutal in the short term, but should have long term gains. I’m counting on it.
Advocate for yourself (no one else is doing it)
I had my neurology team resubmit for in-home physical therapy pending insurance approvals. There was initial push back from insurance (not my medical team) because I work full time. As if working full time is an indicator of my ability to take steps with ease, walk without a rollator, or gain stamina and endurance. Insurance approvals are frustrating but a necessary evil. I asked for regular PT and pelvic floor PT (chemotherapy is brutal on the bladder) so will hopefully begin both in the coming weeks. I brought these issues up and I brought solutions to the table. Be prepared for those rare appointments with your care team so you know what you need and you ask for it!
If you’re considering HSCT or in the midst of treatment or recovery for any illness, advocate for yourself! Your doctors are not mind readers. Tell them what is going on in your body. Do research for yourself but also ask, “is there anyone or anything that can help me with this?” If you don’t ask, you don’t get… so you might as well ask.
We chatted about medications to address some of my symptoms but I opted for the non pharmacological assistance first. My body has been through the ringer with ALL the drugs and I am willing to try the non-drug route as a primary course of action.
Holidays & landmines
The holiday season is hard for many reasons but this year, for me, everything is new. I still have to be cautious about who I am around, who is vaccinated, who is sick and what my cost/benefit analysis is or risk/reward of gatherings will be. I find myself comfortable in small groups. My anxiety tends to stay at bay and I’m branching out and seeing more people.
Enter Thanksgiving: rich food, drinks, and lots of people. It was enjoyable and exhausting. I’m exhausted by the frenetic energy of being around people but I desperately want to be around them. My nervous system is fragile so I’m easily agitated by loud noises, flashing lights… you know, holiday things. The thing that I’m tired of is advocating or explaining my exhaustion. I long to give an update that has nothing to do with my health (or my divorce). I can’t wait to say I’ve traveled somewhere exotic, tried a new restaurant, or caught up with an out-of-state friend.
I need to continue to share my boundaries and the limits of my energy but I resent having to do so. I’m sick and tired of being sick and tired.
I received my flu vaccine and two doses of the COVID-19 bivalent vaccine 21 days apart. These were deemed the most important shots to get given the risk and the fact that it’s flu season. I suffered zero side effects from any of the three shots and am so grateful to have a functioning, albeit baby, immune system. I’m also incredibly grateful to live in a country with abundant access to these life-saving vaccines. I’ve written it before, and I’ll write it again; science is amazing.
Next up, I begin the six-month process of receiving my childhood vaccines. That begins in January and concludes in June of next year. It’s strange to think that chicken pox is once again a very scary and real fear in my life.
I recently wrote an article for Hello Divorce. Their Instagram and web content is immensely helpful to me during rough moments and I partnered with them to share what I learned going through a divorce and bone marrow transplant, simultaneously. I started this blog to share my front-row seat to healthcare in the U.S., my experience with HSCT and everything in between.
I hope this article helps others who may be struggling in a bad marriage or relationship in the midst of major life and health decisions. Read my full article.
New beginnings 2022
A dear friend of mine gave me a Christmas ornament for my tree that says “New Beginnings 2022.” I cried when I unwrapped it for all the brief sentiment encompasses. Rather than focus on the challenges and what I’ve lost, I’m filled with what this year has given me. Choice. Health. Possibility. Curly hair.
The beauty and the struggle live together in the daily experience. I begin again this year in so many ways and look forward to everything yet to come.