I thought the chest port and stem cell harvest would be hard. I knew chemo would be hard. I was not prepared for how hard the transplant was, but those experiences are in the rearview mirror now. I can look back in memory and think it was easier than it actually was. The thing that is hard now, that is front and center, is resting and healing and recovering.
I’m struggling big time
Mentally, this is the most difficult thing I’ve faced.
If you know me, you are well aware that patience is not my virtue. I was told from the beginning that HSCT is a year-long recovery. But what does that actually mean? Who spends a year recovering? I mean, I only have 12 weeks of FMLA and then I’m back to working full time. A whole year to recover — that can’t possibly apply to me. I am obviously going to feel amazing. I’m going to throw my walkers in the closet and skip down my driveway. I’m going to be magically cured and impossibly strong and resilient days after emerging from the hospital and receiving the transplant, obviously. Hopeful or delusional?
No one will be shocked to read that none of the above occurred.
My body is battered and broken and my old MS scars still have the ability to rear their ugly heads and cause a variety of neurological symptoms. I’ve never been this fatigued — bone weary, can’t sit up, tired. I’m relying heavily on my rollators and have one on each floor of my house. I thought I was getting stronger and out of nowhere this past weekend, I had searing leg pain and involuntary muscle spasms in my legs where I couldn’t walk at all, first from excruciating nerve pain then from weakness. I’ve spent several days in my bedroom on the second floor of my house because I still can’t take stairs.
Through all of this, just getting through the day, I remind myself that I went through a bone marrow transplant one month ago. I gently go over the fact that I had multiple high-doses of different chemotherapies. I took out a core system of my body that is currently rebuilding itself. But I can’t see any of that, I only feel. All of this is to say, I want to be stronger than I am. I want to be further along in the healing process. But I’m not.
N=1 science experiment
The mental gymnastics of one step forward, five steps back is demoralizing at best and soul-crushing at its worst. There is no road map. There are no answers. There are only best guesses and medication to manage symptoms. I’m a science experiment. I share with my doctors so they know what’s going on and can offer counsel. But that’s not the same thing as your medical team having the answers. MS is different in every person. Bone marrow transplant is different in every person. Combine the two and seriously, who knows what will happen. (hint: nobody)
I hate how heavily I rely on others right now — to bring me food, help me stand, do my laundry, water my plants (I can at least do this again next week). While the people in my life are kind and generous and willing to help, it’s emotional to be so in need. I’m grateful to them and still hate that I need their assistance.
The wins I celebrate may seem small but I have to celebrate each one. Before my recent leg issues, I walked over 3,000 steps with my rollator. I was able to get on my stationery bike and ride for 10 minutes. I was able to make my own dinner. I emptied the dishwasher. I have to celebrate small wins and I have to believe I will keep improving… even if it takes a whole damn year.
Despite these wins, I’m constantly at war with myself. Do I rest because I’m exhausted or do I push through exhaustion in the hopes it gets better? Will tomorrow be better or worse and why? Is there any causation to how I feel today based on what happened yesterday? I never have answers to any of these questions. I just live each day in my amazing, wonderful body and tell myself to take it one day at a time. I can’t think about six weeks from now, or next week or tomorrow.
I’m physically healing and mentally trying to process that healing. I’m struggling each day. Healing is really hard.