I Never Feel "Caught Up" Anymore

Every time I have a few free moments to sit down and update the blog, I feel like 62 things have happened that I need to address here.  Half the time, this realization makes the task of updating so daunting that I just blow it off entirely.  Today, I feel like I at least need to try to suck it up and get some things out.

I should start with the fact that the phone call with biopsy results that I was promised 2-4 days after the surgery never came and so a full *WEEK* later, I called to find out what was going on.  A few hours later, Dr. Avellone's nurse, Hayley, called me back to tell me that the biopsy results were negative.  Which I already knew on some level, but was glad to hear "officially".  Now it's just a matter of waiting for the biopsies and cauterization to heal and see if I feel any better.  As of right now, going on three weeks later, I don't.  Still in pretty significant pain most days.  Still have to pee 10-20 times a day.  Hayley said that they have another GYN cancer survivor with Radiation Cystitis who swears by the Hyperbaric Oxygen Chamber Treatments, so maybe that will end up happening.  I have a follow-up in 6 days, so more waiting and seeing...

Second on my list of "Stuff Not To Forget To Mention In The Blog": The Survivor's Support Group at The Gathering Place.  The first one was a week ago last Tuesday.  It's a new group and a new idea, and when I showed up it was just me, the counselor, and one other woman.  We talked and shared and with it really just being the three of us, a lot of miscellaneous little stories came up.  I mentioned my parents being here with my through my treatments, I mentioned that they had just moved here from Colorado, and then I mentioned my dad knitting... The other woman said something to the effect of, "I know we're not supposed to talk about this (TGP has a policy against discussing doctors or medical facilities by name) but did you get chemo at Moll Pavillion?"  Yes.  We were there at the same time.  She's talked to my dad at length and I have a VERY foggy memory of talking to her and her husband one day as well.  Amazing.  The world is so small, and Cleveland is the smallest city on earth.  So amazing.

And while I'm talking about the amazing things that have been coming from my involvement in things offered by The Gathering Place, I should jump right into this past weekend's 2nd Annual Young Adult's Retreat.  Which. Was. AWESOME.  I am so glad that I went, not that there was any doubt in my mind that I would.  Pretty much as soon as they told me there was going to be a second one, I was checking the website daily to try to register for it the moment it was posted!  I spent the week leading up to it worried that it would be cancelled due to the absurd government shutdown bullshit and the retreat being held at a place in the Cuyahoga Valley National Park.  But lucky for us all, the place in question was the Environmental Education Center, which is owned by the Conservancy for CVNP - a nonprofit that leases space from the national park. So we were allowed to be there!  The weekend could not have been more beautiful. Perfect weather, the autumn leaves just beginning to change.  
There were more attendees this year, and I met several new people.  It's not my place to share their stories, but all I can say is I have a dozen new heroes.  But out of all the stories I heard this weekend about young adults going through the bullshit that is cancer, the one that actually got to me the most... was my own.
Every time I have been to any sort of support group, any time anyone new asks, any time I have told my cancer story, I basically say something like, "I'm Phoebe. I'm 38 years old. I was diagnosed with Stage 2B Cervical Cancer in November of 2011, I had chemo and both external and internal radiation and I finished treatment in January of 2012." And that's about all I ever say. Somehow, though, as I listened to everyone's stories this past weekend, I "GOT" that my story began a year earlier, when I began inexplicably bleeding 24/7. It continued through our New Year's Eve emergency room visit.  Through multiple pelvic exams. Through multiple doctors. Test after test... It continued beyond the Gynecologist who was told that my family doctor thought she "saw something" on my cervix told me it was nothing even after I tested POSITIVE for HPV, a common cause of Cervical Cancer...  As I went on in this support group about the details leading up to my diagnosis, I suddenly looked up and saw that I was far from the only person crying.  SEVERAL of these amazing young people, whom I felt certain had all had it much worse than I, we're also in tears listening to what I had been through...
And then as I continued my story beyond the whole magic of "cancer free" for so many months, and into the details of the Radiation Cystitis that is now ruling my entire life, I finally got that no one person who has been through this fuck of a disease has it any better or worse than anyone else.  Because you never know all the details.  You never know what the future will hold.  I spent my whole summer plagued by fears about recurrence, thinking that would be the solitary bad thing that would come of my post-cancer life... all the while, I had no idea Radiation Cystitis even existed.  And then suddenly, cancer changed my whole world again with this fucker of a late side effect that now rules my life. 

I am trying to stay strong and positive, but the truth is, I am so upset.  I'm angry that it happened to me.  I'm worried that it may be incurable.  I hate what it is doing to me, to my life, to Ryan.  I am trying to stay positive.  Trying not to let this make me a miserable asshole.  Because to be honest, I feel like it is bad enough that it could...

But here's the thing.  I have been told fairly often by the people I know or have met since my cancer or through this blog that I am inspiring.  That the way I dealt with my cancer was so positive or graceful or whatever.  And I always just sort of thought that it only seems that was because I happen to be halfway decent at writing from my heart, telling the truth, and sharing every possible feeling.  But am I inspiring?  I dunno.  I have always thought that I am just a person who is dealing with a shitty thing the way any person would if they were dealt my same bunk ass deck.  But the truth is, maybe I did deal with it with positivity and grace... because I am a positive person.  (I'd say I'm a graceful person, too, but too many of you have seen me spaztastically trip and fall on my ass, so you'd all know that is a lie...). I think that I dealt with cancer with positivity and grace because I am positive.  
So I'm trying to stay positive.  Even though this present chapter feels really difficult.  It's not always easy.  I need everyone who comes here to read my words to understand that even though my 2 year Cancerversary is just a couple weeks away, I am right back in the thick of some terrible shit.  It could be worse, I guess. It's not cancer again.  But cancer did this to me.  Cancer, once again, came along and stole my life from me.  Hurt me.  Kicked me in the junk.  And left me sitting here trying like hell to find that PMA and hold fast to it while it feels like the ship is sinking...

I guess I got away from the retreat a little there, and maybe I'll talk more about some of the awesome things that happened there in another post one day soon.  I guess the cystitis bit just sort of trumped everything because I'm having a particularly bad day today.  Because the pain is bad and like an idiot, I spent my day googling Radiation Cystitis and finding absolutely nothing promising.  Like, not a single thing.  I read all about how it's symptoms are similar to Interstitial Cystitis and Bacterial Cystitis, but that it does not respond to treatments as well, if at all, as the other more common versions do.  I did it to myself and this is why I don't normally do that internet thing when it comes to medical stuff.  I guess I thought I was looking for hope, and ended up feeling even more hopeless.

It's shitty.  And I hate that I am really struggling to stay Positively Phoebe through it all.
Hopefully something good will happen at my appointment next week.  Something hopeful.
I have to really try to not lose hope.

Xox, Phoebe 

Comments

Rob T. said…
Positively inspiring Phoebe - sending my positive energy for positive and hopeful outcomes next week. And in the meantime :)
Marie Coburn said…
You are very inspiring. The fact that you were able to stay positive at all through this illness and everything that has surrounded it, is inspiring in itself.
I was just about to call/text you about the Hyperbaric Oxygen Chamber Treatments. We had some reps come in the other day from Marymount Hospital, where they have the mobile unit. I talked to them about a little of what you were going through (I hope yo don't mind) and they definitely recommended the treatments. And the best part is that there are no side effects. I would give it a shot for sure.

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