Days home: 142
Sunday Jan 3, 2016 is my 5 month immune systems post-transplant b-day. A special shout out to the transplant vets before me who said "patience is key - it will get better".....were they ever right.
I bought an upright bike to get better cardio than I got on my recumbent bike. I watch free spin class videos online and ride (to the best of my ability). Today I started crying 6 minutes into my ride. It was tears of pure gratitude. It dawned on me that 6 months ago I never would have been able to pedal intervals of standing up and sitting for 15 minutes straight. Don't get me wrong, the riders in the video are on level 406, and I'm on level 3...but still......I will get there. In my golden fitness days, I did spin, kickboxing, yoga and worked out 5-6 days a week. I plan to get back.
It just all hit me at once. I AM HEALING.
WHAT THE DOCS SAY
I met with my hematologist Wednesday. We both got emotional. I was her first bone marrow transplant patient for auto immune disease vs. cancer. She was skeptical, but hopeful. In her words: "I'm just overjoyed. Your blood work is perfect. You are fairing better than all my other transplant patients". She has been my educator, cheerleader and comforter. She knows this procedure and its symptoms so well, having monitored cancer patients for 10+ years. If she is happy,.... I'm ecstatic.
I also met with an amazing GI doc last week. After all the ER visits due to stomach spasms from hell (I have never had these before) he wants to find out the "why". Chicago officially diagnosed me with Celiac disease, and I have been lactose intolerant for a decade. He wants to take it a step further and test me for all dietary intolerance and get the official diagnosis(es) on paper. From there my entire diet will be modified (for good) and ensure that I never ingest things that make my tummy unhappy.
PT and OT are very happy with progress. In 2.5 months I surpassed their expectations. I did their "homework" every day. I pushed myself. I was competitive. I wanted to get better. It worked. They have all but discharged me. They want to see me 1-2 months after returning to work, to ensure I am doing ok.
*Bay area peeps: if you need or know someone who needs either a heamo or a GI doc, email me.
I head back to work Jan 8th. Yep, its a Friday. I figure I will be overwhelmed, physically and emotionally, and might need the weekend to recover. Plus the majority of the day will be spent on the phone with IT trying to recover email, voicemail, going through 6 months of emails ACK! LOL
For my colleagues: I am looking forward to more shenanigans, problem solving, innovation and laughs when I return. I love my job and my colleagues. Let's see what 2016 has in store for m professionally........
- Caught my first post transplant cold Dec 22. Still recovering. Luckily I never developed any fever, and got lots of rest. My coughing fits caused me to throw out my neck. It required visits to a chiropractor, PT and a masseuse just to be able to hold my head up. Very painful. I so hope my work colleagues stay home when they are sick. I'm really not interested in another cold.
- Overall not much change from the last post. Stamina, strength & mood are all better. I will continue to struggle with several issues mentioned before (hand palsy, hot flashes, numbness, weakness, fatigue). Two things I hope to recover are jumping and a quick sprint (like to dart and catch something). The nerve message to my calf muscles and lower legs have not healed enough to be able to do either. It's entertaining to watch me try. I think I am jumping, but I am just bouncing...feet still on the ground. Although I can do some interesting dance moves and hold my balance. LOL
- I can also stand with my feet together, close my eyes, and not step out for balance for 30 sec. This may sound ridiculous, but when I started PT, I couldn't stand with my feet together with my eyes open. My inner ear nerves that control balance are also improving.
- I no longer walk with a cane. I have an awesome foot brace (TurboMed Orthotics) for long walks and any incline....but I can now walk cane-free.
Only time will tell if there will be more improvement. It's up to me to modify as though there will never be improvement, with the hopes that there will.
Wishing you all a happy, healthy and prosperous year. Chase what brings you joy. Live to make great memories and spend time with people who make you smile. Be grateful for what you have, but fight for what you want. Not trying to be soap-boxy, just all my revelations of the 2015 calendar year.
Life is very very short. If you get to spend a second of that time healthy, then its up to you to be happy.