Right now everything is about numbers. What time did I take my last temperature? What was that temperature? How many hours sleep have I had? How much did I actual eat? How many days til I go home and so on and so on. Feeling like numbers are running my life a little more so then usual but hey, I have a life for them to run so I think I will count that as a win.
We were released from the hospital on Friday to return to the comfort and safety of the condo. What a true gift from a truly remarkable man this condo has been! I went from a 20 x 20 room to a 2 bedroom beautiful luxurious spread overlooking the city of Chicago. I am sure you can image how amazing that felt and feels still to this moment. (how is this my life?)
As re-entry Betsy 2.0 begins I had big plans and designs (in my head). I’m going to go shopping and buy a pair of socks! I want to go to Eataly and order that plate of pasta I have been dreaming about. And finally the most important I must get to the Apple store cause I need……Nothing. I need nothing but its a new Apple store and I have not been so I want to go so bad. You know what I did this weekend? None of that.
My body told me what to do and I listened. From Friday at 1PM when I walked into this condo until this morning when I need to leave for my next blood test I have left exactly one time. For 10 minutes to the market in the building. At 8 AM on Sat when the store had a total of 3 people in it, one being me. I wore my long sleeves and tucked my hands inside the sleeves as I shopped. I wouldn’t touch the credit card machine. I was by far the most paranoid I have ever been about germs realizing I have a super healthy (punn intended) respect for what can happen as well.
Before you all start loosing your minds telling what I can and can not do out of the love you have for me. What I can and can not be around because of my immunity. Let me share with you what I was told but the medical team, what I asked a Scleroderma sister who has been through this procedure and then what I am going to do to honor and take care of myself.
My medical team (as I heard and remember it) said as of Friday mid-day I could fly home on a commercial airplane as of that day but they suggest I wear a mask. They said to avoid crowds if at all possible. Washing my hands often especially before I eat was going to be super important. Stay away from folks who are sick in any way shape of form because I can pick up an illness quickly. No plants in the house, don’t take out the trash or clean up animal poop. Wash all fruits and veggies thoroughly before consumption, however given my chosen profession as a germ-a-phobe in food safety for the restaurant industry I already had that one covered.
My Scleroderma sister who has had this procedure and is doing great, said the entire first year matters but she watched things in sections. She said the first 30 days was huge for her. Then to always remember I was a different person now and that for the first 100 days and the first year were all major millstones. Her advice was logical like pay attention to who is near you, who sneezes, and who may be ill. Don’t shake hands. Smile and say I am recovering from stem cell so please allow a smile to be my hand shake. In the first 30 days from transplant day think of yourself as a newborn baby. Would I take a new child to X to do Y. If the answer is no I should not go. She did say to remember also just like a newborn baby I am starting to build (in my case rebuild) my immune system. Respect it.
My game plan. I will listen to my body. Fatigue is a very real thing in my life. In fact I have never experienced fatigue like I have now. Wow. I will rest when it comes on. I will not push through and suck it up butter cup because in my new life that might lead to very dire consequences. I will mask up when there are too many for my comfort until that no longer feels necessary for me. I will have rubber gloves in my pocket as a barrier for when I feel its safer to use them. Washing my hands often will be even more normal for me. I will only eat from restaurants I trust and be smart about the foods I choose. As far as being around sick folks I have been on hyper alert for this for months leading to transplant. That will continue. And finally, I will do each and every one of the things my medical team and my Scleroderma Sister shared.
Bottom line I will be cautious, listen 100% to the medical team but take it even further. Taking precautions for this one precious life I get to live so that it is a long long life to live.