T+14 Home Again

WOW, what a crazy time its been since my last post. Monday morning when Dr. Happy Pants decided to let me go, I didn't realize there would be so many things that needed to happen to spring me from the joint. I thought just pack and go, but no. They had to do a bunch of bloodwork, give me IV Platelets because my count was only 26 and they wanted it at least 50 to get my vascular catheter removed, and they needed to give me IV Magnesium and Potassium(which take about 4 hours apiece to infuse).

Ok, having the central line removed was the single most painful part of the entire chemotherapy treatment this summer. Basically, they just numbed my skin for the 3 inches that the catheter ran under it, and pulled it out. Literally, the doc just pulled the tube out. He would pull about a millimeter, then cut the scar tissue back, and repeat until it came completely out. It took about 45 minutes to get the whole thing out, and man was I not expecting how much it would hurt.

I loved having the port in during the treatment phase, because I didn't have to get any more sticks in my arms. Also, the port took huge volumes of fluid through it, so things like transfusions went quicker. But towards the end, the catheter was getting a bit uncomfortable from all the scar tissue, so I don't miss it anymore. I also don't miss the dongles hanging out of my chest, they were kinda creepy. I never really got used to them. I would look at them and think, those go straight to my jugular, and I would weird out.

Anyway, so by about 5:30 pm, they finally discharged me to go home. I was kinda sad to say goodbye to all the wonderful nurses and PCTs who helped me while I was in there, because they were so kind in caring for me and they all said they hoped they never saw me again, which I agreed with I'd rather not go back either.

Leaving the airlock to go out to the lobby and down to the truck was very emotional for me. It wasn't that I was jumping up and down with excitement, I've kind of never been that way, rather it was more a sense of accomplishment and relief. Accomplishment in that I had done something truly amazing, and difficult, and come through it solidly. I am proud of myself for that. Relief in that the hardest part was over and I wasn't going to be locked up in that little ward any more.

From Saturday when they first said I may go home Monday, until I left, the isolation ward suddenly got really, really small. I could feel the excitement of leaving building inside and it began showing me how uncomfortable I was and how confining the ward was.

I read a book last year called Deep Survival, by Laurence Gonzales, who had some suggestions I had been following. In his lifetime, he has been studying people who survive critial situations, like being lost at sea, or mountain climbing and getting caught in a blizzard. One of the conclusions he came to in dealing with long term survival situations was that the likelyhood of surviving increased with the victim's ability to come to terms with their situation, adapt to it, and begin living in the altered reality.

For example, when a solo sailor's boat sank in the middle of the Pacific and he lived over 300 days in his liferaft, he very quickly was able to create a new living standard for being in the liferaft. He didn't think about being rescued, or what life would be like when he was, instead he focused on learning how to fish and catch rainwater, watch weather patterns, navigate by the stars, to the point that when he finally drifted into some Mexican fishermen, and they rescued him, he told them to finish fishing that day before they took him in. He was so comfortable in the environment of being lost at sea, that he was able to deal with being out of touch long term.

I felt that going into isolation would be similar. I knew it would be extremely confining. And I also knew that if I focused on getting out, and what that would be like, I would be setting an expectation for myself that may take a very long time to come to fruition, and could lead to depression if my stay became extended. So, from the get go, I didn't think, in detail, about leaving.

Getting out was my goal, but my focus was on doing everything I was told so that I could recover as quickly as possible. It wasn't until they said I might leave on Monday that leaving came to my mind in detail. And suddenly, being in the ward was much more difficult. It was as if a switch were turned on in my head and it was all I could think about. Crazy as it sounds, thinking about leaving only made the discomforts of being there worse. Suddenly, I hated the uncomfortable bed, I hated peeing in the plastic jar all the time, I couldn't stand the food(which was terrible even according to my visitors). Once my mind realized I was going to survive and get out, it switched from assimilating and coping with being in there, to just wanting to get out ASAP.

Being home has been great, and it has been challenging. Great because I get to see and play with Hope, I have the freedom to move around and eat/drink when I want to(IE no longer on a strict regimine for everything), and I get to sleep without being woken up every 4 hours. Challenging because my body's so exhausted. I had no concept of how far they took my system down until I came home. I can barely go more than about 15 or 20 minutes out of bed without feeling exhausted. Its like all I want to do is sleep, which is a good thing actually.

My home health nurse came by yesterday and couldn't believe that I had just been released and was at only T+13. She said, "You look amazing. I can't believe you're up and moving around, much less answering the door and offering me coffee. In 40 years of nursing, I bet I've only seen 2 people who look as good as you do at this point. You're really blessed."

Then she took my blood pressure and was shocked. "You have the blood pressure of a teenager. I don't know many 40 year olds who are 110/72, but your heartrate is 101, which means your body is still working very hard, so you have to be careful not to overdo things. Don't get all excited and wipe yourself out."

She's right. My doctor said it will take 6-8 months for the BEAM chemotherapy to completely leach out of my bones and be removed from my body. So even though I'm excited and happy to be home, I still have a long way to go.

But there is definately something wonderful about having come through my Stem Cell Transplant. I'm a very blessed man indeed.