A Catch-Up Before the New Excitement
**This post was transferred from the now defunct "The Long Ease" blog.**
I've been seriously failing as a blogger.
Thing is, blogging has, for well over a decade now, been a big part of my life. And to be completely honest, this past year, I really feel like I've been failing at many aspects of life. Blogging is just the tip of the iceberg.
All this crap started just under a year ago, I think. And by "all this crap" I mean "radiation cystitis" or "pelvic radiation disease" or, if I want to be more, you know, flowery... "the fucking hell that is late side effects from my cancer treatment".
Between the pain, the need to pee 24/7, the leaky faucet (so to speak), the multiple surgical procedures and multiple infections, and the overall lack of relief from these things, I have withdrawn from a lot more than just blog writing. I have barely been able to work out, having completely lost hold of the healthy post-cancer lifestyle I was so proud to be cultivating. I had to cut my hours back at work because I was too exhausted always for ten hour days. But the worst part - the HARDEST part - was, I really withdrew from my beloved social life and my amazing network of friends.
Maybe I'm imagining things, but I feel like after so many time of not being able to say "yes" to invites, or not initiating them myself, I kinda stopped getting them. Not completely, but, you know... NOTICEABLY less than I used to. I've felt super lonely. Ryan works a lot with the new business torturing him seven days a week, 18+ hours a day. And so I am alone a lot. I go to doctors. I go to support groups. I work. I run errands. And I sleep. But the social things I used to enjoy, I have not been able to do...
Art openings? FORGET IT. When you have no idea when you might desperately need a restroom again with no notice whatsoever, the idea of a) trying to even LOCATE one in whatever arty-farty establishment and then b) waiting in line behind throngs of hipsters polishing their huge glasses in there and/or doing blow off the toilet seat or whatever to then c) discover that there is NO toilet paper... too risky. Too anxiety-inducing. So that's out. Hiking? Yeah, once I discovered that any sort of strenuous activity basically creates a constant drip-drip-drip situation, the end result of which is the look and feel of having basically just pissed my pants all at once, meant things like hiking and biking were out. Kayak trip with a bunch of friends? Yeah... not exactly the best situation for me and my sad bladder and angry bowels. Even a day of errand running with a friend was more often than not just too exhausting, or included multiple instances of "is there a bathroom here?"
So, if I wasn't going to an appointment with a doctor or wellness pro or attending a support group or meditation class, I was home. Alone. I still keep busy with work and projects and whatnot, but to be honest - I've just felt shitty and lonely and hopeless.
Now, from the beginning of all this garbage, Ryan - King of Google - had basically managed to find all six articles on the entire internet about my stupid, rare issues. And one of the things he kept seeing was Hyperbaric Oxygen Therapy (HBOT). If you don't feel like reading the lengthy Wikipedia page linked there, the basic gist is you breathe 100% oxygen at higher than atmospheric pressure and it forces oxygen rich blood into all the angry little un-healing area that were destroyed by the radiation treatments. It has a very high success rate (and a very LOW recurrence rate) with my diagnosis. And without it, my diagnosis has a very HIGH recurrence rate - basically meaning a lifetime of these issues. Ugh.
Because insurance is all a nightmare, the procedure had to be prescribed by my Urology doctor and then pre-approved by my insurance company. I went to my follow-up appointment 6 weeks after my last bladder surgery with Dr. Avallone so nervous I could hardly function. I was afraid that if I WAS healing, he would not prescribe the HBOT and then I would be subject to lifelong recurrences, never knowing when it might happen again - always being too afraid to push myself physically for fear of aggravating it again. No way to live.
Well, he started off the appointment by telling me that I am to never let anyone biopsy the area again and that I am to never let anyone do the cauterization procedure he had done again because the area is just too damaged and I am at great risk for a fistula - or basically the bladder tearing through. Yikes. But why was he telling me this? Oh... because, next bombshell.... HE'S LEAVING TOO! My last appointment with him before the surgery he told me that my beloved Oncologist, Dr. Kebria, is leaving. And now he's leaving too. Devastated.
The good news was, though, that not only did it appear that my bladder WAS healing better than last time, it was still healing far too slow for his liking and he did believe that, and I quote, "if there was ever a patient that would benefit from the HBOT..." it was me! After the exam, I stood up, pantsless, and embraced him, sobbing like a fool. I just couldn't believe that he was leaving AND that I would be getting the treatment that may actually put an END to all this terrible terribleness.
As for setting up the HBOT, the parts that stick out most to me are a) they see SUCH great results with my diagnosis and this treatment, b) the HBOT seems to work the BEST, in their opinions, on radiation injuries and c) they could not BELIEVE that I have been able to go to work with this. I guess I'm just tough. I mean, yeah. It hurts. Pretty much on a sliding scale of low to medium-high on a daily basis. But what the hell else can I do?
Well, anyhow. I got the insurance approval. I passed the physical exam, and I started the treatment THIS MORNING!
But I wanted to make it a separate post, so I can sort of log the progress, day by day.
Day One, coming up shortly...
xxo, Phoebe Marie