I have reached another milestone of 180 days since my bone marrow transplant. That is 6 months. It’s hard for me to believe. I still have issues but I’m doing relatively well. My most recent biospy showed no signs of leukemia and my platelet count is magically coming back up and hopefully will continue to trend upwards. Not Robin Roberts well but I might be getting there. My prednisone dose was lowered to 10 today so I can start getting off this extra 20 lbs that is weighing me down and making me so uncomfortable this summer. With the lowering of steroids there is also the hope that my hip joints will get better and maybe I’ll be able to walk normally and there won’t be permanent damage requiring surgery. I go for a MRI this week to see. I use my cane when I need and I use my handicap parking tag. It saves my energy and joint impact.
Now that I’m 6 months old I get to start all my childhood vaccinations. When they wiped out my immune system they took everything out including any shots or boosters I’ve ever received. This week I got 5 shots. Polio, Hep B, Dtap, Hib and pneumonia. I remember watching my babies get their shots at this age and no wonder they cry! The shots sting and then your arms hurts for days. Unfortunately, 11th floor James clinic did not have super hero bandages.
How do I feel after 6 months?
I’m okay. I still get tired easily. I still have to schedule rest breaks. My body doesn’t do what i want it to do yet but i try everyday. The medications have caused muscle atrophy that I am trying to build back up but it’s hard when I’m still on the medications. We took a little family weekend trip to Dayton because Alexander really wanted to spend two full days at the Airforce museum. Amira and I went in for a little small tour but we mostly spent time around town swimming and going to the park and watching movies in the hotel. It was fun and the family had a great time. I got home and was completely exhausted. I could not move for Sunday and most of Monday. I felt like I was back at those days when I could not get out of bed before 2:00 pm. Tuesday was better and I was able to get back to my normal activities.
I seem to get every single side effect from this drug. I am exercising mostly in the water and I take small walks. I had made a goal at the beginning of the summer that I would be able to walk our 5K for Be The Match. I’m not going to be able to walk a 5K I don’t think. I may have to do the 1K or push a wheelchair for the 5K in case my legs give out. It really depends on what the MRI says. As of today we have raised 50% of our goal money for the run. It costs approximately $100 to add a person to the bone marrow donation registry and our team would like to help off-set that cost because we know how important it is for everyone willing to donate bone marrow or stem cells to be able to register.
Emotionally I’m up and down but it’s mostly from the prednisone. I feel angry over the last year. Where did it go? A year of my life is gone and I only have foggy passive memories of it. I regret missing out on that time with my children and I’m both honored and saddened my what my husband has gone through. He takes care of everything and just keeps going. I am sad and affronted by the injustice, the infraction that cancer has put on our life. Yes, I get pissed and i think that’s okay. I am here now but is it enough? I am limited. I still have so many restrictions. I am getting better but its up and down. And we are always aware of how sick I can get suddenly.
I also feel incredible joy to do the things that I wasn’t able to do last year. Or even 3 months ago. I can drive, most of the time. I can do laundry, watch the kids, make simple meals and take a weekend trip with the family. I’m so excited to start work soon. I will be working as SLP two days a week at one school. We are finding our normal and it feels great.
The most recent album I purchased on iTunes is Emeli Sande. This video and song are empowering: