Wow, it's been a while since I posted! But, to be fair, things were CRAZY hectic with having
to pack, prep moving, get all of the things arranged on both ends, all within a few weeks. It was a LOT. And again, Jess is a freaking superwoman and huge shout out to Becca and Josh (Jess's sister and her husband, my brother from another mother, who has the same exact birthday as me!). They helped a ton, from Rochester, NY, and then drove down to help us move from Virginia to NJ. Anyway, there was a lot going on in very little time and, of course, during all of that, there was still chemo and cancer to contend with.
Two nights before the move, we were in the ER for about five hours. My resting heart rate (resting, mind you - literally sitting in a chair on the deck) was jumping all over the place, from 113 to 127 to 133 to 108. It was like that for over an hour and the on-call oncology physician wanted me to go to the ER. They ran EKGs and did a CT of my lungs to rule out a blood clot and gave me IV fluids. I had a lengthy conversation with my intake nurse about Dungeons & Dragons and the Dragonlance chronicles, lol. He was so excited to chat with me about D&D and when I told him we were moving, he said "Virginia is losing a good man." Hahaha. But, no clots, no heart attack or anything. The concern was the chemo pills as they are known to cause heart problems. Just what I need, work on beating cancer in order
to put constant strain on my heart? Maybe even lead to an early heart attack? We were told explicitly from the beginning, by the CNP and by the pharmacy that one of the bigger potential side effects was heart stuff. How long was that going on? Who knows. We only noticed that day because I decided to check my heart rate with my Apple watch. And just to make sure my watch wasn't giving a false reading, we tried Jess's watch on my other arm. Same thing. So now I'm off those pills and the doctor is re-evaluating what to do as far as supplementing the IV treatments that happen every three weeks.
I did get my stomach tube switched out for a third time, before we left. They "installed" the low-profile peg, so now I don't have any tubes hanging out of my body. It's just a little thing like an inflatable pool tube would have, lol. It's so much better. I don't feel the gravity strain of having something pulling at me that I have to wrap up, etc. I feel much more mobile or free to move without fear of snagging something, or pain. I'm not using the tube; I'm eating normally, but it's there if I need it, just in case.
But right now, I feel good. Still not putting weight on, but I feel good. I feel better in the mornings and less sick and all around much better. My brother, Jimmy, who works at the VA hospital in Philadelphia said they had a patient on the same medication who they recently had to give chest compressions to. That's scary stuff! The IV chemo treatments continue though. I have my next treatment next week. I'll have to drive back down to Virginia for it, but after that, treatments should continue with the VA, in Philadelphia. I have an appointment on Monday, with the General Practitioner. Then I should get shifted into the VA oncology. After this next treatment, my oncologist wants to do another PET scan to see how things are progressing. Weirdly, despite the chemo, I'm not losing my hair. If anything, it
seems to be growing more. I've been working on a rather nice beard, if I do say so myself. Had to get a trim at the amazing Commonwealth Barber Shop before we left Virginia.
We're back in NJ now, in lovely Frenchtown. You wouldn't think you were in NJ. Jess and I missed this river, and this cute little town, and we're glad to be back. That didn't go without a hitch either. The day before the move we found out that Jess's dad got Covid. So, we lost most of our help and had to hire moving help for unloading. Becca and Josh are super awesome, but even with them, we needed more help. I stayed at an Air BnB until yesterday in order to make sure I was not exposed. But it's all good now. Jess's dad is fine and got the all-clear. Jess stayed safe and is fine. I got to pet a baby goat. We've got a nice set up here, at Jess's dad's house. He has a big house and it's just him and we have pretty much our own first floor "apartment." Our own living room, bedroom, office, and bathroom. The dogs are adjusting. They have a nice fenced in area in the back to run.
It's weird being "retired." SSDI was approved and I'll be getting that money to help supplement and ironically, as I leave/left the classroom, Jess was just hired at Centenary University where she'll be in the classroom. I'm excited for her. She's teaching Intro to Creative Writing and Writing Prose. She was also just interviewed by Insider Magazine after they read her blog for Cancer Awareness about cancer patients in rural areas! Insider Magazine! That runs next month, I believe.
In the meantime, I'm writing. I turned in a third Ready to Read and I have two more Junior Monster Scouts books to write. I'm in the middle of a graphic novel Jess and I are co-writing and then I have some other projects in mind.
I've been struggling a bit emotionally and mentally with the reality of my situation. We both have, for sure. The stark reality of mortality and how long I might have and the very real presence of Stage IV cancer. We're both sad (understatement) and hopeful, yes, but that does not take away the reality and gravity of the situation. How do you maintain a constant positive attitude when you have to face the fact that your partner is not going to have the longer life you both thought he would? That you're not necessarily going to grow old together? That tomorrow may not come for one of you much sooner than either of you could have imagined? Again, who the hell knows...I may beat this back a lot and have many, many more years. But at the end of the day, I have some pretty serious cancer and that's not changing any time soon.
I appreciate all of your love and hugs and humor and kindness and well-wishes, cards, gifts, and support. You truly help us both through the peaks and valleys of this nightmare.
Our Go Fund Me page for those willing to share or contribute: Click here. And a huge thank you to all of you who have, or have sent cards and donations. It all goes to help with the medical bills, medications, and to help offset the cost of living vs. reduced income.
This post is brought to you by the GOAT.
- j