The Complications of Complications

It's not a brag when I tell people that I've pushed myself past the point of exhaustion over the past 7 months. Rather, it is a confession. A confession that I'm not a supermom, I'm human. I've done my best to stay strong and keep my Family together, and keep myself together a well. All those days I slept maybe 2 hours at a time and then was (mostly) awake for another 30+ hours. It can really mess with your head. At first you feel invincible, but after a few weeks, reality sets in and you crumple up in tears, just wanting 8 hours of uninterrupted sleep.

Everybody else isn't only your focus, they become the focus of everyone else around you, and you disappear. Heaven forbid you should mention how you're feeling because it's not about you, it's about them. You start to feel guilty when you do things for yourself, and you know that you need whatever that thing is. Oh, and the sleep? That feeling of helplessness eventually disappears, and you become invincible again. It's similar to a manic episode, but it's not, and no amount of (prescribed) drugs will allow you to get the sleep that evades you, and the emotional rollercoaster becomes a waking nightmare. I've been there. I've been there a lot. So many tearful confessions in the middle of the night. Not even sure of what I needed, but knowing I wanted something.

I can look back now with a clear head, and besides the obvious, (sleep) what might have been helpful is having someone outside of my Household insist on making sure I was getting enough food and fluids. Dragging me away from the hospital, pushing me into having fun. No one is to blame on that, well, no one but me. I effectively pushed others away because my brain was mushy from a lack of proper rest and nutrition. It took Jonathan “ordering” me a month ago to actually go out without feeling guilty, and I came back from that feeling even worse. It took me until today to analyze it and tear it apart. At first, I thought it was my social anxiety rearing up its ugly head, but it was more than that. I had forgotten how to enjoy myself, and I had gotten so used to taking care of things that I pushed others away. I defeated myself.

This brings me to now. Today, May 4, 2016. I slept last night. I slept this morning too, and it was uninterrupted. I ate yesterday and consumed about a gallon of fluids. I've had nutritional food today as well. I might even gain back the25 pounds I lost. That's okay. Right now, at this moment, I have inner peace. Don't be lulled into thinking things are good, because they're not, but I've learned something: I have been suffering from the complications of complications, and now that I know what it is and what it's done to me, I can work on getting better. Can I fix the other complications? No, but that's what the doctors are supposed to do.
 

The Complications:

When someone has cancer, or AIDS, or any other life threatening illness, complications are mentioned, but they really aren't expected. This isn't to say that they rarely show up, but most people don't want to hear about it. They don't expect it, and the Specialists and Doctors and Treatment Team are constantly observing and looking to be sure that the most common ones (fever, rashes) don't occur. Steroids (Prednisone) and other medications are routinely prescribed as a precaution. Jonathan currently has 20 different medications prescribed, most as a precaution, and some to deal with his constant pain. Most days, he does well, and he's in a good mood, and if it wasn't for his bald head and the mask he wears you wouldn’t realize he was sick.

When Jonathan called me on Friday, April 22^nd, just as I was fixing dinner, he had a high fever and needed to be taken to the hospital immediately. No, not the local one. City of Hope. I left instructions with Stitch and Shilo and headed out the door. Once there, they took his vital signs (weight 64 kg, mentioned because it's important!) assigned him to a temporary room, and did a series of tests on him, including an EKG, chest x-rays, and blood cultures. He was admitted, and I brought him home Tuesday night. He was feeling weak, but better. I had planned on driving him to his regular check up on Friday (April 29^th) so his early morning call wasn't unexpected, but he sounded horrible. I had to assist him into my car, and get a wheelchair so he could get around. When it was time for him to see the doctor, he got up on the scale and I panicked! He was down to 59 kg! I'm not very good at math, but I knew it was a loss of at least 10 pounds in a week! His Doctor was naturally concerned, and after a long Q&A, Jonathan was sent to get a 4 hour IV therapy. He also decided that Jonathan might be having complications related to his transplant, so an endoscopy was ordered for next (this) week. What was supposed to be about an hour turned into an all day event.

In the meantime, while all the above was going on, my oldest child (age 32) did something stupid and was giving me all kinds of unhappiness at home, including having to deal with his father (actually father of all my offspring). My ex-husband was the source of nightmares for years, and even though I no longer have them (at least not ones with him in them) I have a lingering disgust when it comes to him, and I cannot be civilized, no matter how much I try. That was settled by Saturday (April 30^th) but the damage was done, and he brought his daughter over for the weekend without checking first. I Love my granddaughter, but I also appreciate advance notice.

So, fast-forward to Monday (May 2^nd) and Jonathan asked me to take him for his followup appointment the next day (yesterday) because he was having the endoscopy as well, and that requires a driver (me!) I didn't sleep at all (as mentioned in the beginning of this journal entry) but I got him there. This time, because I was less worried, I listened as the doctor explained his concern/theory. Apparently Jonathan has Graft vs. Host Disease (https://www.nlm.nih.gov/medlineplus/ency/article/001309.htm) that has settled in his stomach. The endoscopy (that started 3 hours late) confirmed it. I take Jonathan back on Friday to discuss possible treatments, but I understand this may be a long term thing. Oh, and I'm going to listen to him and get out more often, because it makes him happy to see me happy, and if I happen to distance myself, know that it's not you, it's me.