Thursday, May 26, 2016

Whazzup???!!! (5-26-16)

Oh, so very much! Jonathan's Graft vs. Host disease has settled in his digestive system, primarily in his stomach and intestines. It's not fun, I can tell you that! Add to it that he somehow contracted norovirus, and it requires even more medication. The "upside" is the steroids (prednisone) he takes for the Graft vs. Host disease increased his appetite and he's gained back the weight he lost. He goes to COH twice a week, and I normally take him on Fridays, which is an all day trek. When I get home, all I want to do is eat and sleep. I've become notorious for yelling "Leave me alone!" once I get in bed on Fridays. Not even promises of treats will cause me to get out of bed.

Then there's Daniel. While he had no ill effects from donating, his seizures started up about 5 weeks ago after being seizure-free for nearly a year. We had been gradually decreasing his phenobarbital since September last year, and he had recently decreased to 1/2 of a 32.4 mg tablet at bedtime, so he went back up to a full tablet at bedtime. I picked him up on Tuesday night so he could see the Specialist yesterday, and then stay over with us until Monday night (5-30) Today, Shilo and I decided to drive from Long Beach to CiCi's Pizza in Corona because pizza is Daniel's favorite food. Never mind that Shilo is gluten intolerant! Shilo ate salad and the pizza toppings, and I ate the outside crust he left, plus salad. I'm a carboholic, but I think I can go until next month without bread. (Roll me home, boys!)

Child #5 told me on Mother's Day that he and his lovely wife are expecting their second child. I'm so very excited about this! 9 months ago, they were separated, and heading for a divorce, and now this! I'm really happy that they decided to get back together and make it work.

My oldest, who I invited to move in with us in September last year after a nasty breakup has only reinforced my feelings that I'm too soft-hearted when it comes to my offspring. If anyone deserves a paddling, it's him, simply because he refuses to follow basic rules, and getting him to move out is futile. Maybe if he'd make an attempt to catch up on the back rent he owes, I'd feel better about it.

Child #3 is is living happily on the East Coast with his girlfriend. I love hearing from him, and spent over an hour on the phone with him on Mother's Day.

Then there's Daddy Wayne (AKA: Daddy #2), who recently had his other leg amputated. I visited him about 2 weeks ago in the Rehab section of the hospital he's in, and I was shocked! He was mostly unresponsive, and when he finally responded just as I was leaving, he said all sorts of crazy things. I figured he had just been through too much, and waited two days and called him. He didn't answer. I waited an hour and called again. Both times I left a message, but I was getting worried. He always calls me back right away. Every few days I called, and on Monday I decided I had to do the thing I dreaded: I called his roommate (AKA: The Ex) and told her about my concerns. She was extremely kind, and explained that he had been over-medicated, and the dialysis wasn't filtering the medication from his blood, and as a result, he was poisoned! I have seen him in bad shape before, but this is the worst I've ever seen him. Fortunately, he was already recovering by the time I spoke to her, and he called me Wednesday while I was out, so I took Daniel with me, and we visited him. I even took a short video recording of him explaining what happened so I could share it with anyone who was interested at the Pasadena Munch.

Oh, you wanted to know about me? Well, I'm still standing, and I'm learning more about myself every day. I still have horrible insomnia, and I'm doing my best to stay positive about all this, and, honestly, I realize that that I should count my blessings, because I know how very fortunate I am to have what I do, and because I'm not gonna give up, I'm planning on heading back to the dungeon again soon.

Wednesday, May 4, 2016

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 22nd, 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 29th) 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 30th) 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 2nd) 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 ( 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.