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Showing posts from December, 2011

Good Riddance, 2011.

The events that I woke up to this morning could not have brought into sharper focus what a massive pile of shit this year has been and how ready I am for it to be OVER...

In a way, I'd kind of forgotten how long I have been "sick".  See, the symptoms that should have been major red flags that something was drastically wrong with my body began just about a year ago.  Most of you reading this probably don't know that last December, I started having some super-weird irregular bleeding.  It scared the hell out of me, cause it wasn't just like having a period.  It was redder.  Thicker.  Often with blood clots the size of grapes.  I'd forgotten the exact timeline of it all until I busted out my old phone last night and looked through the app in which I'd been recording all of the symptoms starting last December.

On December 21st of last year, the bleeding began.  On New Year's Eve last year, I was calmly getting ready for Ryan's Boys from County Hell s…

Things That Suck About Fatigue #2

I have not been able to put away laundry or deal with the pile of clothing mess in my closet since this began.  Now that I'm feeling more alive, I thought I might finally tackle my closet disaster today.  I literally managed to hang up three things and weed out 12 empty hangers before I was pouring sweat and had to give up.  Suck.

3 Down, 2 to GO

Yesterday was my third of five brachytherapy sessions.  And it went WAY better than the last one.  Maybe I've healed more.  Maybe it was just better without all of the waiting for CAT scans and whatnot, but whatever the reason - I am very grateful.  I was definitely 10 kinds of loopy when we left there.  I honestly don't really remember pieces of my time there.  But again, I'd rather be mush-brained than throwing up from the demerol, so again - I'll take it.  I saw the nurse we met the day of our first visit to Dr. Flemming's office yesterday, too, and she said that I'm hitting the point in the recovery from the external radiation and chemo where I should be turning the corner on the crappy side effects, and I definitely feel like that's true.  Aside from the general exhaustion, I do feel so much better.  All I can hope is that as my body is feeling better, that stupid cancer is getting smaller and smaller and going away!

Tonight, Ryan and I are going back …

Things That Suck About Fatigue #1

Putting new sheets on the bed and then going from the second floor down to the basement to throw the comforter in the washer, switch the old sheets to the dryer, and coming back up to the second floor... and I am utterly wiped out.  Like I feel like I just did an hour of yoga or rode my bike 5 miles.  This is some crap.

I'm Back!

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.  After he had installed the new…

and on Dec 23...

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 wait. Li…

If I'm not in hell...

...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?  And this is something I've never really…

Pardon the silence

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

I wish I had more energy...

...because this post deserves it.

I am DONE with the external radiation.  Done.  Brahytherapy starts next Monday, but for now, I am done.  4 days off to start healing.

I really wish I had more energy right now, but I will just have to postpone gushing about the awesome folks at Radiation Oncology until I'm feeling less shitty.

But I'm done. Done.

Done.

A Short One.

I feel like hell today. But tomorrow is my last external radiation! And today is my last after-chemo-sickie-Tuesday!
So I feel awful. Exhausted. Burnt.
But at this time tomorrow, i'll be done with this part!
Wow.

Chemo. Is. OVER!

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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 hours!  So what the F%&# made you think you could …

This is really happening, isn't it?

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 also finally relented, yesterday, to acce…

Keeping the faith.

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 this is…

Oh, my aching... areas.

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…

And I CONTINUE to be floored by your love.

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I just had to share this here.  My husband's band-mate and an incredibly dear friend, if not straight up BROTHER, to us both - Rocko - just posted on facebook that his online t-shirt shop is donating ALL of their holiday proceeds to my cancer fund.  I can't even believe that.  Well, no.  I CAN.  Because Rocko is the kind of friend that would give you his house if you really needed it.

Anyhow, I figured I would share the link to his shop here.  It's pretty funny.  Good stuff.  Rocko rules.

Scumbag Cobra Apparel

This is my favorite:


Love love LOVED, Phoebe

Chemo 5 (Yesterday)

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 if yo…

Is "Legpit" a Word?

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 magic Aquafor is no l…

For Better or Worse.

It's getting harder and harder to keep up to date over here.  But I promise not to give up.  Just might need a little extra time in between posts from here on out, and when they come, they will probably be LONGER.  Bear with me.  :)

Now, let's rewind to Thursday...

I started out the morning talking about how tired I have become.  And then I headed off to work.  Where I had a panic attack over the fact that there was a client up in the gallery sniffling and coughing.  See, I totally cannot get sick right now.  Not only would that end up delaying my treatments, but because my white blood cell count is so low, the flu at this point could literally kill me.  That's more than a little scary, no?  In the midst of worrying about that, I sort of realized that this whole putting on a brave face and working through this whole thing is just not in the cards for me, no matter how much I had hoped it would be.

That afternoon, after my radiation appointment, I completely broke down dur…

I Have Never Been So TIRED!

Good grief, Charlie Brown!  I am friggin' EXHAUSTED!  Through this whole process, I have definitely felt more fatigued, more worn down, whatever.  But yesterday - it REALLY hit me.  I woke up at 7am, after a good night's sleep, and I felt pretty decent.  Jumped in the shower.  Cleaned myself up a bit.  Came back upstairs.  Started checking in on the world via my computer... and then BLAM!  I was exhausted.  I'd been awake for approximately 45 minutes, and I could not function.  I had to take an almost 2 hour snooze before I could get it together to go in to work!!
Once I got there, I had the worst time focusing.  The minute anyone in the room was talking, my brain seemed to short-circuit.  I spent 4 hours, mostly sitting down, trying to get all of the paperwork from the past week-plus back in order.  I didn't even do any real framing, and I was ready to fall asleep.
Somehow, I made it across town to radiation, and then I dragged my sleepy butt home and took up residenc…