I was released by my transplant team to return to work September 8th. I am working full time, which consists of 3 twelve hour night shifts. I was given a medical accommodation to not work more than two consecutive 12 hour shifts back to back. That has been a wise decision. This is hard physically, but has been good emotionally. I suppose I won’t make any further physical progress until I keep pushing through to the next level.
I knew returning to work would be difficult, but it was time. I was growing bored at home. Honestly, one day was melting into the next. I couldn’t see much happening in life and the less I had to do, the less I actually did. Nothing really mattered. I could sleep, sit, stare at the wall, or whatever. Considering the summer heat and lack of income, there wasn’t much to do. I’m not sure the word bored is even the right word. More like I had a lack of reason to even be up and going on any given day, just no drive. I needed some reason to keep going.
You may think you want endless time off to do nothing, but I don’t. I learned with a degree of certainty that sitting at home is simply boring. I like the boundaries of having set days off, days that aren’t mine, and having to juggle the two. When I have less time free, I find I do more with my free time. Even though it isn’t fun to get up and go to work in one sense, it really feels good. I have more reason to get up on any given day and exist. Besides, the paycheck is going to be nice, real nice.
I like my job. Taking care of the babies and their families is amazing to me and rewarding. Even though 12 hour nights in a neonatal ICU can be taxing, the paybacks are strong. The atmosphere is quiet, controlled, and my colleagues are great. What is there to not like about holding a 5 pound bundle of growing joy, watching them make slow steady gains? The families are great as they build their confidence and skill set in preparation to take their uber cute cuddle bug home.
The physical aspect of returning to work has been good for me. I needed something to help me get some additional push with stamina and endurance. The long halls and walking to and from the garage has been good for me. I had started to do some light walking during the summer, but that lasted about two days when a hard boiled egg sized knot appeared on my left achilles heel. Tendonitis with the potential to rupture. NOT going there. Rest, lots of rest. I needed, instead of exercise, more like a normal daily activity level. Work has provided that and the knot on the left tendon is slowly resolving with slow steady activity.
The energy level is the biggest issue. This is not a surprise. Almost everyone who goes through Burkitt’s has strong fatigue for the rest of their life. I’m not talking about a type of tiredness anyone is expected to grasp unless they have walked the shoes of one who has gone through emergency chemo for months, chemo that requires in-patient hospitalizations to endure. This stuff is brutal and drains the body of so much life. I cashed in a part of my humanity to stay alive.
I realize that my stamina level will always be low and I’m ok with that. Having had a stem cell transplant November 2014, I realize I have an additional level of tiredness that sets deep in my bones. Honestly, I’m getting good at not thinking about it. I just get up, sigh deeply, and choose to start moving on any given day. Some days I move to the couch. Some days I get up and actually do something. Other days I go to work. I believe it is important for me to have a good solid goal of just being up and doing anything on any day and that is success for me.
If I think about it, I get caught in mental battles. Therefore, I just don’t think about it much anymore. Get up and go and drag my tired butt all the way. I usually feel better after several hours of moving about.
I knew I would have some medical hangovers, occasional problems that would arise. The only big issue I’ve had recurring since the transplant has been intestinal issues. It originally was about every 4 weeks, almost like a intestinal seizures. That has slowly been resolving and my last battle with that was in August I think. Thank you Lord for small miracles.
My first big infection has set in post transplant. I suppose it hasn’t been that big though. Pneumonia and sinusitis. Nasty stuff requiring some rest, antibiotics, steroids, breathing treatments, and all the fun that goes along. I had to miss a couple days work, but am slowly returning back to normal. I forgot how tired pneumonia makes me.
Met with my favorite doctor this morning. She discovered my Burkitt’s in 2008 when 2 hospitals and multiple doctors and ER visits failed to figure out what was wrong. She is recommending I restart on IgG infusions. This should help slow down or stop future pneumonia episodes. I will have to have these replacements for the rest of my life (most likely) every 30 days. I tell you what, after how tired I’ve been this last week from the pneumonia, I’m ready to do anything to stop from getting it again.
Janice and I are going to do something fun tonight. We rented costumes from a shop and are going to a costume party. It is sponsored by Yelp and will be held at a ball room in downtown cowtown, sometimes known as Fort Worth. There is supposed to be all manner of fine food and beverages, dancing, and probably lots of silly stuff. This could be fun. We’ve never done anything like this before; wish us luck.
My hair is rather curly now. I have only had one hair cut since May of 2014. It is getting longer and curlier. I suppose I’m going to have to cut it at some point, but I’m sort of having fun with it for the moment. I suppose a haircut only takes 10 minutes; all this growth took about 1/2 million dollars and 1.5 years.
Overall things are progressing forward. In some ways, all the old things are new again. Just as I dealt with challenges of infection, stamina, and various details of life after my initial battle in 2008, I’m facing them again.