At Home - Recovery

Checking in here. Here is how it is going.  I am somewhere between awful and amazing.  It is 77 days post
stem cell transplant and I am grateful for the way my body has handled all of this. It is strong and overall is handling recovery well. I wish it was that easy for my mind. My mind thinks I should be feeling better by now. I should be back to "normal," whatever that is. From the day I came home, I jumped back into work trying to feel "normal," I walked a mile or more each day, wanting to get my body back into shape, and I struggled daily with eating, drinking, sleeping, and fatigue. See my mind and body do not agree and some days my body wins, while most days, I do what I want and not what is best for my recovery. This is my personality. This is also a coping mechanism. Here I am at Day 77, thinking I should feel great! I don't. I am struggling with fatigue, nausea, heartburn - all remnants of chemo. Allergies have kicked back in as well as my asthma. They have me on antibiotics (the nastiest liquid I have ever taken) to prevent pneumonia as well as an anti-viral medicine to prevent any viral infection. My nerve endings hurt, I work out and my body is unusually sore, and anything with any spice or taste seems to cause heartburn. But in the moments, that I feel ok - I try to take that in and remember that moment. On the days, I get to leave the house, and go to the grocery store, sit on a soccer field or chat with people in real life, I try to remember those moments - those are the best moments and the ones that keep me going. But I so want to get back to my living my life. 

This is not meant to be my pity party post. It is just documenting what recovery at home is like. As I have said over and over, I am so lucky, I could have so many more awful side effects and ailments. That said, there are still side effects that I will battle for many months ahead. I know, patience is something I must embrace. I am not looking for sympathy, shout outs or "you got this" - I am just being authentic and sharing the ups and downs of recovery. 

More reality, in 23 days, I will have a Petscan - the doctors say to get a "re-staging of the disease." When I heard that, I thought, re-staging? You mean the stage where the cancer is fucking gone? I want that stage. If you have ever had cancer, or know someone who has - when you are at the point that I am, when the cancer should be gone - but you just are not 100% sure - you constantly feel for lumps or think symptoms could mean it is back - that is really maddening and not an effective thing to do. It is just human nature.

What is next for me? Well, more healing, more recovery and possibly more maintenance therapy (NOOOO).  Those are the maintenance infusions I had every 8 weeks for the 17 months prior to cancer returning. My Cedar's Sinai doc says it is complicated as to whether we continue this because of COVID.  What I think he means is that by continuing infusions every 8 weeks, we keep my body in an immune compromised state. This is not what I want. If I get a vote, I will opt for letting my body do its thing for awhile and watch and wait. I mean, last time that didn't even work - why would it be different this time? Also, why did I just go through all of that only to continue in this state of pumping poison into my body? January 2021 will be 3 years of battling cancer (which I know - for some - that is a small amount of time) but I need a break from this. I want to live my life again and not focus on just surviving. 

BUT...for now, for today, I am going to focus on the holidays.  😆and I am going to be that person that decorates early, listens to holiday music early, and yes I may have or have not watched a sappy lifetime holiday movie already. 

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.” 

― Haruki Murakami, Kafka on the Shore