Positively Phoebe

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.  Ha...

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, Jenn...

Can you believe it? My last treatment was SIX MONTH AGO TODAY!!!  I am finding this hard to wrap my head around.  In both directions, honestly.  On the one hand, I feel like I JUST walked out of the Radiation Oncology office at the Cleveland Clinic Main Campus, still a little dopey from the drugs, with knitting dad's beautiful scarf freshly wrapped around my neck.  And on the other hand, it feels like a lifetime ago.  Or even like it wasn't my life at all.  Six months. Ten days from now is my 6 month appointment.  I get to have an exam and pap test, but NO PET scan needed!  Woot!  I keep wondering when I get the official "remission" handed to me.  In my mind, for some reason, it is at 6 months... but I may just be making that up.  I can't remember.  Foggy brain. And speaking of that... it's been a minute since I've done a real lingering-side-effects report, so here is one: Menopause symptoms seem to be MOSTLY under cont...

Honestly, a lot of them have disappeared.  Which is awesome.  My butt seems to be doing loads better, which was one of my major pains since the treatments ended.  I still have radiation burns around my front and back, but they are at least starting to fade like a tan in the fall, finally.  Hot flashes are mostly under control with my hormone replacement pills.  My skin and hair seem to be headed back to normal.  A lot of the things that were bothering be have settled way down, which makes me so happy. The worst thing right now? Neuropathy!  Ughhh.  Lately, I wake up every morning and my hands just HURT!! It is a strange pain that is hard to describe, as it is unlike any other hand-pain I have had before.  Over the first hour I am awake, it goes from a sharp, stabby, almost prickly pain to a dull ache accompanied by horrible itchies.  Usually by the time I head off to work, though, it has subsided.  It is completely bizarre and I h...

Regarding most recently talked about issues, I am happy to report that: a) within DAYS of my butt doctor visit, and the subsequent cessation of baby-wipe usage and underpants sleeping, my backside seems to be back to it's normal self. b) on my last day of antibiotics, my UTI seems to be all gone - no more AZO and bright orange wee for me! So, where am I with lingering side effects you might wonder?  Or you might not, but I'm going to talk about it anyhow.  Because it is on my mind. 1. FATIGUE - I am pleasantly surprised to see that the fatigue I was warned about seems to be almost entirely gone.  Only on rare occasions now do I find myself confusedly tired for no reason before it dawns on me that this could be the reason.  Rare like less than once every week or two.  So that's awesome.  I have to imagine that my activity level helped tremendously with this.  From using the rebounder EVERY MORNING to working full days at my (very physical) job to...

I swear.  If I ever get back to just cruising along, nice and normal, without having to go to the doctor for something every week, I will be one happy woman.  Don't get me wrong - I am thrilled to be cancer free... but damned if I am not completely and totally frustrated by all of the lingering nonsense that stupid tumor and its treatments left behind. I AM happy to report, at least, that with very little need to dip into the butt ointment, my rear end is doing MUCH better.  All it took was no more baby wipes and no more soap.  And I am left with a much happier... everything back there.  So a big thanks to Dr. Williams.  Hooray! Yesterday, however, I noticed that the symptoms I was having last week that I thought felt like a urinary tract infection seemed to be back - and with a vengeance.  Pain.  Nausea.  Urgency - generally with no results.  I felt horrid most of the day and this morning I decided it was time to deal with it a...

So I drove all the way out to some new Cleveland Clinic campus out in Avon today to see Dr. Williams.  I am collecting doctors like an old person, I swear. I went through the standard questions with the nurse before he came in - I pretty much know them all by heart, now.  They usually get tripped up on the date of my last period being last November, but the girl today actually just asked, "Do you still even get a period?" which was a surprising change. When Dr. Williams came in, I was reminded of something a friend of mine who recently had to have a colonoscopy said about it being unfair that all ass-related doctors are hot.  Cue Dr. Williams.  I don't know what I was expecting, but a cute, young black man was not it.  I explained all my symptoms and he started to tell me to get undressed from the waist down and cover up with the sheet on the exam table, but I was like, "Dude.  I know this part after all I went through these last few months."  He l...

I have a doctor appointment with a new doctor.  For someone who used to have to be on the verge of death to go to the doctor, I sure have become little miss something's-wrong-i-need-a-doctor-NOW!  Dr. Williams (who I didn't realize when I made the appointment, is located in Avon at some schmancy new Colo-Rectal Specialty joint.  Yeah.  That's right.  I'm off to the butt doctor today. Seems that all of the damage the external radiation did to my lady basement is not really healing up on it's own. So my dear Dr. Kebria referred me to this dude to check out what's wrong with my rump. I am NOT excited.  Definitely hoping no one says the word "colonoscopy" to me today.  *shudder*  But honestly, I'll go for whatever needs to be done because what is currently going on down there is kind of a nightmare.  I'm still in a lot of pain whenever I have to poop, there seems to be unhealed tears, that pesky hemorrhoid hasn't gone back where it came ...

That being the case, I figured this morning I would bring you all back into my humiliating world of post-treatment side effects. Today's installment of self-inflicted humiliation will revolve around the dreaded vaginal dilator. I HATE THIS THING!!!!! Seriously, I know I will hate it less if I use it more, but GAWD!  It is just terrible.  It hurts.  It makes me cramp.  It makes me bleed.  And the really sad part is... it's pretty small.  Like, its diameter is considerably LESS than the average wiener, and definitely less than that of the one I'm spending the rest of my life with.  Ahem... Every doctor appointment, they tell me "If you're having regular sex (at least 3 times a week), you won't NEED to use the dilator."  Excuse me, but I have not had sex three times in the past YEAR, people!  I was bleeding like a stuck pig for 11 months and then going through horrific cancer treatments for 3 months and the remaining side effect...

Nearly every morning, weather permitting, between like 5am and 7am, someone walks past our house loudly singing in a strange operatic sort of way.  This has been going no for some time now.  Strangely, however, it was not until this evening that I actually, I dunno, PROCESSED this.  And how utterly bizarre it is.  And how utterly bizarre it is that I have just sort of accepted it up to now - never letting it pique my curiosity enough to even step out of bed and lean the foot and a half over to the window to peer out the blinds and see WHAT THE HELL is going on there!  I mean, that's weird, right? I brought this up to Ryan a moment ago.  I had to ask - does this actually happen, or have I been hallucinating/dreaming this for the past couple months?  But his reply: "Yeah.  That happens." leads me to believe that I have either just become so accepting of things making no sense in my life or my post-chemo brain is still so foggy that it just ne...

Yeah.  I had bloodwork done yesterday morning and a few hours later, Dr. Kebria called to let me know that my ovaries have officially closed up shop.  No more period.  Instead I get to trade that for all the fun of menopause: -Hot flashes? Already happening. -Night sweats?  Check. -Loss of libido?  Not yet - it's been so long with all of the treatments and the weirdness leading up to the diagnosis, I finally have little BUT sex on the brain now that I know I can have it again. -Mood swings / sudden tears?  Uh, I'm  girl.  This is my whole life. -Fatigue?  We're already well acquainted. -Decrease in body hair / increase in facial hair?  Well, some of my body hair got decreased already (thank you radiation).  And I already fought with errant chin hairs before this, so it's hard to say if anything has changed... although it does seem like my leg hair is growing sllllowwww.  So that's a plus. -Sleep disorders?  Already...

Over the past week or so, I'm finally starting to get OUT and see people again.  (Well... people other than Ryan and my parents - who have been my entire social world for a couple months now.)  And getting out and seeing people has made me more aware of how I feel.  It took seeing various friends to really get that I am looking and doing a lot better.  But it's also hard because, as this post title says, better is a long-ass way from normal. This is something that I had not realized would be so difficult to convey to... well... everyone.  I think it has to do with the fact that the people in your life who love and care about you - they WANT you to be "OK."  They feel better if they think you are better.  And that's not a bad thing, but it IS a difficult thing to try to live up to. I mean, sure.  I didn't lose my hair, so when people see me and I look relatively like me old normal self, they are happy.  I keep hearing "You look so good," ...

In more ways than one. Sorry about the lack of posts (from me - although Ryan's from a few days ago was just lovely!!)  It's been such a crazy week and now that so much time has gone by, I really have no idea where to begin. My last post was on December 20th, and that was pretty close to my lowest point through this entire process.  I was miserable Tuesday and Wednesday, and then Thursday was my second brachytherapy.  And it was a nightmare.  Ryan did a pretty decent job of describing how NOT ok I was in his last post.  It really was terrible.  I was already in so much pain from the external radiation that everything they were up to INSIDE was just unbelievably painful.  But as Ryan also mentioned, Dr. Flemming is awesome.  During all of this painful procedure, he was really fantastic about describing exactly what each pieces-part that they were sticking in there is going to feel like and how/where it would hurt/create pressure or cramping/etc...

...then hell is in me.  In my ass, to be precise.  At least, that would explain the fire going on back there. Yeah.  Remember when I was bitching up a storm about my "legpits"?  Well that was an effing cakewalk compared to this.  Somehow I guess I thought that once external radiation was done, things would start getting better down below.  Oh, Stupid Phoebe.  How you could not have been more wrong.  Since that much anticipated day a week ago, things in the side-effect area have gotten nothing but a bazillion times worse.  The raw red skin and weeping gray blisters that once tormented me up front have now taken up residence in the crack of my ass.  And, uncomfortable as it may have been in the front, I could at least make some effort to cool off/dry out the legpit blister-thon by laying like a starfish, limbs splayed as wide as possible in every direction with various and sundry pillows propping up this or that.  But you know what?...

Sorry for the lack of updates since radiation finished. The pain, discomfort and fatigue make doing ANYTHING a far more monumental task than it should be. Including just sitting up. I promise to back more normally once I have even a little more energy. Love love, Phoebe

When I first started this blog, I said something about feeling like this wasn't even happening to me.  I began this journey detached, not to mention completely unaware of what I was in for.  Well, at this point, there is no denying that this is 100% happening to me.  For the last two nights, I haven't even been able to separate from it all enough to just... sleep.  Every bit of "that area" feels like it is either on fire or just, like, disintegrating.  Literally.  My skin seems to just be falling off.  The blisters I've written about look almost gray in color.  At yesterday's appointment, the nurse examined me and decided that what it may be, rather than blisters, is a yeast infection.  Not in the traditional location, but just there in the folds of my skin.  Gross.  So, now I've added Monistat to the list of seemingly useless goops that I am smearing around my groin, none of which have helped in the slightest.  I als...

I'm really trying to... I have to keep telling myself that if these side effects are kicking my ass so brutally, then the treatment itself MUST be bashing the living hell out of the cancer.  God, I fucking hope it is.  It better be. Here's where I am today: swollen, cracking skin in places you really don't want to have swollen, cracking skin. Round two of blisters on top of blisters in that un-named 'legpit' area - these are so horrid that just the act of walking makes the blisters pop (very painful) and seep, and the resulting moisture seems to make MORE blisters happen. And more pain. And more, just, YUCK.  And then, on top of all that, I literally screamed and cried in pain just from going to the bathroom.  I'm not normally a screamer - it was almost frightening to hear the sounds coming out of my own mouth.  Again, I had to shower after because I could not cope with the pain of wiping my own butt.  Sobbed through the entire thing. I'm sure that th...

With 20 radiation treatments down and 5 to go, I am really trying to stay upbeat and positive.  I mean - I'm almost there.  A week from today will be my first day of being DONE with part one of this treatment.  That's pretty awesome.  But it's hard, at certain moments, to stay positive.  I can't help thinking how much easier this would be if I'd managed to get cancer in a less humiliating area... Somehow, when the doctor told me that the side effects of this radiation would be mostly localized, the fact that everything "down there" would be in misery didn't really penetrate.  Somehow, it never occurred to me that I would have to take a shower after pooping, because the simple act of wiping my poor, fried butt would just be too painful to bear.  Or that just walking down the stairs would bring a tear to my eye because my "legpits" would be filled with blisters.  Or that I would be in possession of so many ointments and salves and goos to smea...

I got some good news and some bad news yesterday during my 5th chemotherapy session. We'll start with the bad to just get it out of the way.  What I was hoping might be my LAST chemo yesterday, was actually number five of SIX.  They originally told me it was 5 to correspond with the five weeks of radiation, but because of scheduling, my radiation sessions were split up into 2 short weeks and 4 regular ones. So yeah.  One more chemo.  I mean, I guess that's not REALLY bad news.  I'm getting to be a pro at managing the nausea and am actually getting BETTER at making myself eat even when I don't want to (though I'm still dropping weight - but not TOO much, luckily).  The worst part is... [WARNING: this is where the humiliating nature of the location of this cancer and the surrounding areas and their functions have become SUCH a ridiculous part of my daily life, that I've lost all decorum when it comes to what may or may not be considered " TMI ".  So ...

And if not, what the hell do you call the leg-crease-liner equivalent of the armpit? Well... whatever it's called, mine are my new enemy.  Thus far, my side-effects have been mostly vague things like nausea and fatigue.  Well that's all changed now. I was told from the very beginning that (aside from fatigue) the radiation side effects would be "localized".  The bladder and bowels would be irritated and I'd end up losing hair (not the sort one needs a Sammy Hagar wig to cover... but rather would send one merkin shopping instead) and having a sunburn-like thing going on. Yeah.  That was putting it mildly.  Aside from the free brazilian and the four-alarm fire in my entire nether-area, I also now have horrid blisters forming in the aforementioned "legpit" area.  Painful ones.  Like, walked around Disneyworld for twelve hours in a new pair of Doc Martens ones.  Some of the blisters have blisters.  I'm not even exaggerating.  The mag...