HSCT Recovery: Week 4

Did that Turtle really win the race? I know I am only 1 month in, but this HSCT recovery feels like the turtle’s pace, so I’m counting on the story book ending!! Keeping in mind that each little SLOW step is progress!

Starting with severe anemia, it has taken me 4 weeks to get back to near normal counts. Still low, but I am on my way up and can feel the difference this week! With my compromised immune system, we have taken great pains to keep me from getting sick. And so far, we have been 100% successful!!

I have been VERY well taken care of by friends and family here in New Braunfels, TX!! We are all vigilant about avoiding germs and staying away from public places! Hand washing and hand sanitizer are used obsessively! I have a dedicated bathroom that is used only by me. All of my sweet caretakers wipe down light switches, door knobs, remote controls, car door handles, seats and seat belts daily, if not more often!

My outings are usually either to the hematologist for blood work (Dr. Zweibach), my primary care doctor (Dr. Pak), and my chiropractor, (Dr. Stamps)! I also visit both of my sisters homes, who have sanitized for me!! I do wear a mask when I go out in public and I am very careful with what I touch. Hand sanitizer!!!

My meals are carefully planned to avoid food poisoning. Most meals are prepared at home. Mike washes and cuts my raw veggies, all other meals have been carefully prepared and fully cooked. I have had meals from restaurants that is fully cooked, avoiding all raw veggies (no lettuce, tomato, raw onion, etc). Since the weather is now cooler, soup has been a staple meal! I have tried to stay with my WFPB+fish diet (OMS Diet) but I have added red meat to help with my anemia.

Pets? I have spent a little time around dogs while visiting my sisters homes. Both sisters have dogs and I pet them but I am careful to keep my hands away from their faces. Then, hand sanitizer! When I get back home to New York, this will be much harder to do with my own pup, Hank!

So…how is my progress?? It is slow, and each event is small but still worthy of celebration!! My appointment this week with my GP, Dr. Pak and his nurse Mari was very encouraging! They are huge cheerleaders for me and I wish I could take them back to NY! Their joy for my progress is the best medicine!!

Report Card: I can now shower standing up, and I don’t need to rest after to recover. I don’t have to take a nap during the day, although I do rest a lot. I now sleep through the night with almost 8 hours! I don’t lose my breath while having a conversation. I have only used my trekking poles the past week and have left my wheelie walker at home! I am very sturdy when I stand, without the ‘balloon-head’! I can close my eyes and lean my head back while standing without losing my balance or wavering!! (Think of rinsing shampoo IF you have hair!) It has been 2 weeks since I have had a MS Hug! I can walk unaided down the hall, in a straight line. I am having to re-learn the mechanics of moving my right leg to take ‘normal’ steps. It is getting better, but needs practice! My handwriting has improved due to less numbness in my right hand. The sensitivity to bright light is much improved and has reduced the need for sunglasses. I have no nausea which is more likely related to the improved balance and no more ‘fish bowl head’.

None of things by themselves seem huge (as I would like)! I wish I had grand things to report but, listed together, I can see progress! The picture I chose to attach on this blog is not new to me, but now I’m LIVING it!

Confession, I can swing from excitement to disappointment several times each day. I was more than a little discouraged last week, I thought I would skip through all the tedious parts of recovery and be out passing at least a few of the mall walkers by now! Nope! Mike listened and reminded me that this is a marathon and not a sprint! And that I AM rocking this! I also have friends and family and doctors and nurses that remind me how far I have come and I’m only at the beginning!

This journey is not easy, and it is long! (2 Years?) I am thankful that I am surrounded by encouraging and positive people that keep me on the right track or nudge me back when I waver, especially in the midst of the disappointments or stagnant times in the recovery process! I want to really seek and acknowledge all new things, no matter how small and insignificant it seems, and give each one the celebration it deserves!

“For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland.” Isaiah 43:19 NLT (emphasis mine)

My plan, if all goes well, is to return home to Port Washington, NY on November 18. I will still be immune compromised for at least 6 months and need to take special care to stay well. I can’t wait to see everyone, but please contact me in advance so we can make appropriate plans.