Radiation Cystitis?

Once again, I have not had the opportunity to update since my last visit to Dr. Kebria's office.  My apologies.  (It sure was a lot easier to update regularly when I was in bed most of the day and no one expected anything of me.  Ha.)

So, with the CAT Scan coming back clear and the urine cultures showing nothing abnormal but blood, Ryan's assumption of Radiation Cystitis seems to be the likely culprit.  Basically it is an irritation of the bladder caused by radiation.  (People keep asking if there are cysts in my bladder, but no - "cyst" is just the medical prefix that means "bladder".)  I have a cystoscopy scheduled with a Urologist at my Oncology office on September 11, and that will tell us a lot more about how much damage there is to my bladder and how to move forward with treatment / symptom management measures.  (One of which could be Hyperbaric Oxygen Chamber Treatment - NEAT!!!!)

It's funny.  During radiation, I remember my nurse, Jennifer, saying that I wasn't supposed to get ALL the side effects.  But I really did seem to do just that.  And it only continues, almost 2 years later!  Less than 5% of people treated for cervical cancer get radiation cystitis.  Lucky me.  Again.

When I think about all the side effects of cancer treatment that I am still left with, the worst by a landslide is the fear of recurrence.  But I'm not gonna lie.  This Radiation Cystitis business is a close second.  And I think that's just because, at least at the moment, it is a CONSTANT thing.  Yes, my $165 (and that's for the generic!!) Detrol prescription helps with the whole feeling like I have to pee every 20 minutes thing.  But I still do have to pee more than ten times a day (on a good day).  And I still have some of the painful symptoms as well.  The prescription has offered NO relief from the feeling that I am being stabbed in the bladder every time I empty it.  And if I end up having to pee and can't get to a restroom (like when we were driving home from Mansfield this past weekend or if I wake up in the night realizing I have to "go" and need to navigate down the stairs in the dark to the toilet), the pain of "holding it" is downright nauseating.  There is also a constant minor pain that feels like it's located at wherever the exit point is from my body, if that makes sense.  So that's neat.  I'm not a big fan of pain-killers, so I'm barely taking Advil when it gets too terrible.  I know I probably should, but I just don't like that stuff.  And you can forget about narcotics.  No sir.

Ryan did a lot of research (shocking) on this subject and did find a lot of information about supplements that would be helpful.  So we have now stocked up on a high-end fish oil for Omega-3s, a fancy vag-area specific probiotic, supposedly magical supplement called Curcumin (made from Tumeric), and a very specific women's multi-vitamin (not a 1-a-day, as those are apparently bullshit).

In addition to all of these new additions, I am also a week into a NO GLUTEN test period.  When I asked nurse Erin about the bloaty feelings I've been having, she said it's probably gluten or dairy, so I'm going to try a month of gluten-free nonsense and if that doesn't help, I'll add no dairy to the no gluten for another month to see if THAT makes any difference.  This bums me out to no end, but health comes first.  Last night, Ryan and I made a gluten free pizza and it didn't suck.  But a DAIRY-FREE pizza would be pointless.  So, I'm hoping the no gluten thing does the trick.  We shall see.

Anyhow.  That's where we're at.

More news as soon as I have it...

Xxo, Phoebe

Comments

s k o t t said…
i promise, dairy free pizza can still be good! not sure about gluten free, though.
Carol Schuschuschulien said…
This will sound like I'm full of shit, but a cheese free pizza can be really delicious. If you ever need a recipe, I have one for an alfredo-y one. It's awesome.

phoebe marie said…
I don't eat soy because of the cancer thing, so I didn't know there were any cheese substitutes available that were soy-free. And pizza with NO cheese? Well, I barely put sauce on there, because I don't like tomato, so basically a cheese-free pizza for me would be crust. Bleh.

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