It’s been a long time since I wrote in my blog. I have been in my hospital room ocusor 18 days. Yesterday, I received great news, that my numbers were good enough for me to go home. It is both exciting and scary.
I have amazing nurses and doctors to thank for taking such good care of me. I feel loved at the hospital. But I also feel like a person that has been in jail and is now being released into society. As much as I hate being cooped up, it becomes very familiar. Suddenly, the real world seems overwhelming. But I’ve been very eager to just smell fresh air. Even people in jail get an hour of fresh air a day.
Here is a list of what I experienced over the past 18 days:
- Shared a room for 4 days. Doesn’t sound like a big deal, but when people are sick, trust me, you don’t want to share a room or bathroom. You don’t sleep.
- Got a rash all over my chest
- Had a fever (bigger deal when you have Cancer). Judging by the x-rays, they thought it was mild pneumonia. Took antibiotics for a week.
- 5 blood transfusions
- 2 platelet transfusions
- 1 allergic reaction to the platelet transfusion. Broke out in major hives all over body. Had to take two rounds of Benadryl through my IV.
- 2 Chest x rays
- Major mouth sores where I couldn’t open my mouth for 3 days. Couldn’t eat or drink.
- Extreme lower back spasms from having Neupogen shots in my belly each day.
Yes, this all sounds very dramatic, but it has been quite the run. There is probably more that I can’t remember. There are so many “scary” things constantly taking place. It can drive you nuts if you worry about everything. The entire time, I was just thinking about not thinking too much. I would constantly remind myself to only think about the things in my control. Anything out of my control, I had to have the discipline of mind to push it out of the way.
There simply is no reason to worry about anything that is out of our control. What will happen will happen. The more stuff that we go through in a small period of time, the harder it is to stay cool and calm. But we just have too.
By refocusing my energy on what I could control, I was able to maintain my sanity. I would focus on small things, like drinking a lot of water, taking walks in the hallway, listening to classical music (thanks to Norm’s advice), and trying to eat as much as possible.
I have successfully finished round 1A, 1B, and 1C, which I just completed. 1C is the big one. You typically have to stay in your hospital room for 18-21 days straight. Next up is h2A, 2B and 2C. Then 3B. Each round takes a little over a month. So there are about four and a half intense months left. After that it is maintenance, which is no picnic, but is all outpatient. This means that if all goes well, I won’t have to stay in the hospital during treatment. So I just cleared a huge hurdle, getting through these first three rounds.
I am now at my new house that April and I are renting in University City. I love it. April has done an amazing job getting it all set up. But I do feel an adjustment period. At the hospital, if something feels a little funny, I just push a button and a nurse is there within a minute. Here at the house, I feel unplugged. I don’t have filtered air. I have to be much more cautious/paranoid. I have to watch out for sick people, flying dust, dirt that has fungus, etc. At the moment it is difficult to relax. I’m sure in a few days I will settle in.
Ultimately I am so glad to be out of the hospital. It was so great to sleep on my Tempurpedic bed. It was nice to see birds, walk on carpet, go to the refrigerator, pee in a regular toilet, and sit on a couch. Over the next twelve days, I will get to recover. Hopefully gain some strength back. My son Brandon will be in town next Thursday, and I am super happy about that.
Before I left the hospital, the doctors asked what I was most looking forward to. I said that I was very excited to garden with Brandon at my new house. The doctors immediately shut that one down, and said that gardening is out for my entire three-year program. It is too dangerous because of the fungus. I’m not going to lie. I was bummed.
I decided to make a list of all the things that I can’t do for three years. Gardening is officially on that list now, along with being at Padre games, traveling outside of San Diego, eating at restaurants, swimming in the ocean, going to movies, hugging all my friends, eating Chipotle, lifting weights, and making babies. This list will continue to grow. Then, three years from now, I am going to do everything on that list. I may even take a year off of work, and spend my time accomplishing all of these things. So get ready for some hugs!