Positively Phoebe

After my cancer treatment ended, I felt AWAKE.  I felt newly alive and filled with gratitude and wonder and love and calm.  I felt like a better person.  I felt inspired and believed people when they said they felt inspired by me.   Now I feel like I have lost every bit of whatever I gained from that experience.   Now I feel defective and unfixable.  I am w racked with guilt, constantly unable to talk myself out of thoughts that I have ruined Ryan’s life and destroyed the confident, invincible man he was before my illness.  I feel hopeless that this cystitis will never be fixed or that the longer it takes, the more broken I will become in the process and the harder it will be to bounce back if I am EVER able to.     And I feel alone.  It’s easy to support someone going through cancer.  It’s something everyone is familiar with and understands.  But once you’re “cured,” that is all some people can see.  They expect you to be...

Overall, our night away at Mohican was nice.  The entire lodge was almost deserted.  Like, seriously, I think there may have been 2 other people staying there.  We arrived about an hour before sunset, so we didn't get to see TOO much before giving up and going to get dinner (in the EMPTY lodge restaurant... where they managed to charge my credit card THREE TIMES for the meal - I am still fighting with them).  After a mediocre overpriced (even at just ONE swipe of the card) dinner and dessert, we just went back to our room to be overwhelmed by the hundreds of channels available on their satellite tv. What happened after that, I will not go into detail about - although I am sure you can imagine... Suffice it to say that it was the first time in nearly a year that this thing happened.  Between the bleeding leading up to the diagnosis and the discomfort of the treatments that followed it, well, I hadn't been feeling too sexy.  Since this has, however, been a ...

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...

My wonderful wife went to the christmas party at her job (where everyone just about fell over when she walked in), went christmas shopping, then went to the Boys From the County Hell christmas show and hung out until one in the morning... then drove my drunk ass home. For the last two months I have had a fucking laundry list of concerns and worries... but mostly, and perhaps selfishly, I miss hanging out with my best friend. Tonight I got her back for a minute. I am beside myself. I could not be happier... one day after one of the hardest treatments and worst days of this entire ordeal she found the strength to visit with dozens of our friends and talk at length with most of them about how she is doing. She is amazing. ... and yesterday WAS rough. For real. All of the side effects seemed to be peaking. They gave her demerol. They set up a new and different apparatus to perform the second internal radiation, requiring a long wait for another cat scan and calculations... a LONG wai...

...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

Finally. My first last. Today was it.  Chemotherapy number 6 - the final one.  I cannot express how thrilled I am to have even one small part of this behind me.  It is a thrill, to say the least.  Especially after my Misery Guts Weekend. I learned a very important lesson this weekend, though.  Or rather, I applied a very important lesson that I learned when my fears that something really was wrong with me for the past year were true. LISTEN TO YOUR BODY. And what my body was telling me, as I cried out in pain this past week, was this: "Hey you friggin idiot.  You realize that you can't even put most lotions on your skin, right? That there is no facial moisturizer, no matter how delicate, that does not make you turn red with rash. That even "sensitive skin" soap wreaks havoc on the skin of your hands, your armpits, your body.  Even just a quick change in air temperature will give you hives on your extremities for ho...

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...