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Showing posts from 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…

U-G-L-Y, Chemo is my alibi.

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I am NOT pretty right now. Like wow. Woof. Sort of rocking this interesting underwatery gray-green complexion with added loveliness of brownish-black undereye circles.
Any color I do have, which is never a lot to begin with, chemo definitely steals from me.
Strangely, as busted as I look right now, I'm still feeling ok.
And I am officially beyond half way through this series of treatments. So, can my pasty ass get a "hell yeah" to that?
Ok, thanks. Now if you'll pardon me... it's about 7:30pm. Totally bedtime.
Xxo, Phoebe

Chemo 4.1

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Today I've had more problems with my chemo appointment than before. My white blood cell count was ALMOST too low to do the treatment. But I prevailed!
Then, the volunteers who make all of the chemo patients lunch, microwaved some sort of Lean Cuisine lasagna and the smell... oh my god, the SMELL! I was completely nauseated. Needed to cover my face with a blanket and still couldn't deal with it. One nurse gave me a napkin w lavender on it and another gave me an alcohol swab to sniff. Being the weirdo that I am, I preferred the alcohol swab.
When all of the stinky nonsense ended, I was told my blood pressure was too low for the Lasix (the drug that makes me pee a lot). And THEN I was having a weird sensitivity in my arm to the speed of the hydration drip, so they had to slow that down, which meant that I'd end up missing my radiation appointment if I had to wait til the end.
So THAT meant that I got to go down to radiation with my buddy the IV pole.
The awesome part is, h…

... day 27

Today my wife will be officially halfway with the external radiation and 2/3 (or 4/5, depending on how they decide) done with the chemo. I am relieved and amazed every day that goes by that she is feeling good and upbeat and ready to go.
She has weathered some of the worst of this storm much better than some of us; from the first day I've mostly been so panicked I could barely function. I had to drop several things I was doing and just forget about them. I did not have the capacity for my usual 200-projects-at-a-time. For the most part I didn't know what to do and I wished for the first time in my life that I had a real job. A boring, 9-5, do-it-and-forget-it sort of affair... you know, the kind of thing I hate. I wished someone would just give me a shovel and point at where a ditch needed to be. I tried to complete some projects and mostly failed... anything that required an attention span went right in the shitter.
Without her folks here I'm not sure how this would ha…

Floored

There is no other word for it.  I am completely floored.

Yesterday morning, I stumbled upon an article about "Pay a Blogger Day" this coming Tuesday.  The article talked about how, as a modern society, we become addicted to people's blogs and never really think about the fact that their writers are just giving them to us.  For free (mostly).  I myself have a friend whose blog I am ADDICTED to, and earlier this year, she created a shop where you could buy HER things from a cup of coffee, a ball of yarn, a roll of film... all the way up to a month's rent.  I thought it was adorable and immediately   sent her a small amount of money through this shop - no more than I could afford, but just a small thank you for how much her words and pictures contribute to my daily life.  A few days later, I was AMAZED to see that readers were giving her a hard time for doing this - some being downright NASTY about it.  I could not believe it.  This incredibly talented and GIVING woman …

And Then a Doctor Update

I know I'm posting twice in a row here, but I felt like the doctor visit update should be a separate post from the Thanksgiving one.

SO...

Today we went to the Cleveland Clinic Main Campus to meet Dr. Fleming who will be my internal radiation oncologist.  There I also met the RN, Beth, and a resident named Dr. Sheplan, who are my two new favorite people ever.

They REALLY explained to us the entire procedure, including not just what they will be doing once my current treatments are done, but the reasoning behind my currents treatments as well.  We got time-lines and definitions and side-effect lists and even visual aids.

The basic gist is this:  the external beam radiation and the chemotherapy are working together right now to both shrink the tumor and also help prevent any minute spreading that may not have shown up on the scans.  Once that is finished (December 14th), I get a week off and then I will have 5 sessions of the internal radiation (called Brachy Therapy) which comes w…

Giving Thanks

Thanksgiving morning, my friend Jen posted on facebook that she thinks people should be thankful for all they have every day and not just one day out of the year.  Little lady, I could not agree more.

This Thanksgiving was strange to say the least.  I mean, can you really be thankful when the biggest thing you got this year was cancer?  Well honestly - the answer to that is HELL YES!

And don't get me wrong.  I am never going to be one of those "cancer as a gift" people.  F*ck that.  This is NOT a gift.  I would NOT buy it for you for your birthday and wrap it up in pretty paper with hand curled ribbons.  It's shitty and it sucks.  But I AM someone who truly believes that the slap of reality this disease has given me HAS been an incredibly positive thing.

I am SO loved.  I am SO supported.  I am SO strong.  I am SO brave.  I am SO inspired.  I am SO grateful.  I am SO humbled.  I am SO amazed.  And I am all of these things every day of the year.  Not just on Thanksgi…

Yesterday

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Before I get to the gratitude... yesterday was a little rough, I'm not going to lie.

I spent most of the morning wishing I could un-hear the "worst case scenario" as described by the doctor on Tuesday.  But despite the fact that in my heart I KNOW that is not where we are headed, hearing it did change something in me.  And after thinking a lot about it, I sort of "got" that what it changed was that it made the cancer REAL for me.  Up to that point, I knew I had it.  I knew we were treating it and I knew it was going to go away.  Life wasn't REALLY going to change in a permanent way - just temporarily.  You know.  Til we're done curing me.  But hearing that there was even a teeny tiny outside chance of  "much more than a radical hysterectomy" made the reality of the situation just explode in my face.  I don't want this to make my life change in such a horrific way.  I wasn't ready to accept that and it definitely messed with my head mor…

A Meeting with The Doctor

Through all of this, I had actually only seen Dr. Kebria, my gynecologic oncologist, on day one of this whole thing when he performed the emergency biopsy and sent me to the hospital for tests.  He did call me in the hospital to discuss the treatment once I'd been diagnosed, but up until this afternoon, I had not seen him again.

Needless to say, then, that everyone was looking forward to our meeting with him today.  Lots of questions were asked and answered, more by Ryan and my mum than by me, as I continue to be in some sort of indescribable fog surrounding this entire experience.

First off, I'm glad to say that I still like him and feel very comfortable with him.  He is warm and nice and I trust him.  Which is good.

Questions answered (that I remember):

- The "normal" PAP results letter is generated automatically.  Not that they don't look at the results, but with all of my bleeding, there was really no way to get a CORRECT reading from a PAP, so mine most like…

Chemo 3

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I like when the sun shines in the windows here onto my hand with the needle in it because it usually feels so cold.

Every Day I Learn

Seriously.  Every single day, there is something this brings into my life that I did not know the day before.

Yesterday we did early Thanksgiving at Ryan's family's house in Mansfield.  It was actually planned before my diagnosis, because Ryan's brother, Evan, will be out of town this week for actual Thanksgiving.  Anyhow, I was feeling 100% fine when we got up.  I ran an errand.  I made stuffing.  I put on make-up and a dress and even brushed my hair.
My parents planned to join us, but drove separately in case I ended up feeling cruddy and wanted to leave early.  As we were preparing to leave, Ryan decided it would be fun to get his 1971 Challenger (which rarely sees the outside of the garage) out and drive that down to Mansfield (about an hour south of Cleveland).  I love the Challenger.  Ryan REALLY loves the Challenger.  It didn't seem like a bad idea.  We thought it'd put us in good moods.  Be fun.  Happy.

Wrong.

A little less than half way there, I started t…

More Interesting Mail

So, the letter we received from the cemetery is no longer the only piece of disturbing mail I have received since this began.  This past Friday, I cracked open the umpteenth envelope from Cleveland Clinic to fall through my mail slot the past couple weeks.  It was from the gynecologist's office.  The same gynecologist who saw this tumor with her own eyeballs during my exam and rushed me to the oncologist that ultimately diagnosed me with cancer.  Here's what the letter said:


Dear Ms. Nelson:


This letter is to inform you that your PAP done on 11/1/11 was normal.


Yeah.  You read that right.  My PAP results came back NORMAL.  And just in case you don't know exactly what a pap smear is, Webster's defines it as: a method for the early detection of cancer, especially of the cervix, that involves the staining of exfoliated cells using a special technique which differentiates diseased tissue. In other words, the doc scrapes some cells off your cervix and they test them.  For cer…

No News is Good News

I wanted to pop in really quick this morning and apologize for the lack of updates the past several days.

First off - nothing bad has happened.  I'm just getting into the swing of this whole treatment schedule and I either haven't had time to post or have just been too sleepy to come up with anything good to say.

Here's a quick recap, and I PROMISE to get back to more detailed posting asap.  (Just not today...)

After chemotherapy #2 on Monday, I was feeling fine.  Til Tuesday morning.  At which point the nausea I'd heard so much about finally arrived.  It hung out until Thursday, when my chemo coach called in a new anti-nausea prescription for me.  And this one WORKED.  Went back to feeling pretty OK.

The last couple of days have just been about "feeling normal".  The weekends are kind of a break from the reality of all this, and I would be lying if I didn't say that I LOVE the break.

I have so much more to tell you all about, but right now I have to ge…

My dad.

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Through all this stupid cancer biz, one thing is remarkably clear: just how loved I am.
My relationship with my dad (my birth father, Jim, for those of you keeping track) over the years has been an odd one. We spent a good decade-plus chunk in the middle of it barely knowing each other at all.
But despite everything that happened, it never occurred to me to feel salty about the years we kinda lost each other. And once we had reconnected, he was honestly the reason I left Seattle and moved back to Ohio nine and a half years ago.
Even during the time we were both here, we sometimes got too caught up in "life" to see each other or even talk regularly.
Now we talk every day. And if we didn't, it wouldn't matter. But it's pretty cool that we do - even if it's just for a moment.
I've given him a hard time about his way of coping with my diagnosis (namely by poopooing a certain country song - hehe) but I'm amazed by him, too. Every day.
Especially yeste…

Blehh.

Well, today I woke up feeling nauseous, which meant I got to sample my sweet anti-nausea pills for the first time. Happy to report they definitely help, but I did still just feel vaguely crummy all day today. Despite the down turn, I still managed to take a nice walk around our park with Ryan this morning AND made it through my now-standard 6 hour work day and radiation appointment. I even went grocery shopping and cooked dinner! So it can't be that bad, right?
If this is as bad as it gets, then this will be a breeze.
Now if you'll excuse me, i have to go drink some flat gingerale and go to sleep at 8:30pm.
Love love, Phoebe

I continue to be amazed.

You want to know what is truly humbling?  Love.  Friendship.  Support.  Watching and/or listening to your parents cry because they love you and are worried about you and are also amazed by you.  Holding hands with a bald stranger and feeling more respect and strength and seeing more beauty in that face than you ever knew existed.  Reading card after card after email after email wishing you well and urging your forward in your fight.  Lovely and unusual gifts, be they flowers, teddy bears, jewelry, slippers, clean windows, voodoo dolls, bourbon, sacred dirt, or even the promise of a handmade scarf.  Adding a new friend to my "cancer crew" (a.k.a. "awesome club") and reading his words which have summed up, better than anything I've read or been told, EXACTLY how i feel and what I'm going through.  Cheers to you all.  I can honestly say, I now understand the definition of that word.  I am humbled.

Xxo, Phoebe

Chemo 2.2

All day today there's been a lovely lady all dressed in green sitting across from me. A few minutes ago, she got my attention and told me she had had Stage III endometrial cancer, has been coming since february, lost her hair, but is ALL CLEAR! I overheard the nurse earlier telling her that her positive mindset definitely helped. So when she told me she was passing her healing energy on to me, i felt so lucky!
As we left i stopped to hold her hand briefly and thank her. She pulled one of her bracelets off and pushed it over our clasped hands onto my wrist. Said her girlfriends made them for her.
If you ever start to doubt the good in people and the world, get sick. The love out there is truly amazing!
Xxo, Phoebe

Chemo 2.1

An hour left to go and then i can say i am 1/3 done with chemo treatments. So that's pretty cool. Still no nausea. Still have all my hair. Still feeling pretty great. The only really negative thing i can say is that my already abnormally sensitive sense of smell is completely out of control. Everything feels like a miserable assault on my sad beak. Especially (sadly) coffee smells. Booooo.
Xxo, Phoebe

Lovely Weekend

Sorry for the lack of updates this weekend.  With no doctor visits, there has been little to report, at least medically speaking.

But that doesn't mean that there isn't stuff to say.  So here's the latest:

Friday afternoon, I arrived at my radiation appointment to find my step-dad, Gary, waiting in the waiting room for me!  He left Colorado Wednesday morning and arrived a day earlier than I had expected.  I feel like his emotions surrounding this whole thing are different than a lot of the family because he, himself, is a three-time cancer survivor.  I know his point of view is different and he is such an emotional fella to begin with - it was definitely hard for him in a very different way than it has been for so many others.  Anyhow, there were DEFINITELY plenty of tears as we hugged in the waiting room.  But they were good ones.

Saturday, I got to feel "normal" for a while.  I had my regular Saturday date with my lovely friend, Mallorie.  She drove me around o…

Lakewood Park

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This morning took Ryan and me to Lakewood Park. It was cold and snowy... and still beautiful. I really love Lake Erie. I understand my father's connection to it entirely.
The waves this morning were just big enough to be loud as they hit the breakwall, and the water was an eerie gray-green.
There is nowhere else on earth I'd rather be fighting this thing. Nowhere.
Xxo, Phoebe

HIPAA and you

So, this letter. The one from shithead memorial park (actually, as you may have guessed, their name is not shithead memorial park. It is Sunset Memorial Park of North Olmstead) ? They don't send this stuff to random 36-year-old women. Not ads for burial plots. You can't tell me they do. This was targeted on information supplied by someone at the hospital in CLEAR violation of federal HIPAA law.

Now, I've spoken with a couple lawyers... ONE letter is not particularly actionable (although we are going to try). TWO letters, sent to two different recent diagnosees within days of their diagnoses is actionable. Three or more would make it a slam dunk... and as we all know, criminals are stupid. There are more of these out there.
If anyone knows anyone else recently diagnosed, particularly at fairview... please gently point them this direction and maybe they'll go "A-HA! I got one of those!" If we get a couple we're all going to pay some bills with it... and ri…

More family

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Phoebe's grandpa Joe designed the Lakewood logo... this one is at Lakewood park

Yesterday

Can I just say that my husband is amazing? Well, he is. Completely.

Taking a walk somewhere every morning is something we've talked about doing for years. Stupid that cancer had to be the reason we finally got off our fat butts and started doing it, but I'm happy that we are.
Yesterday morning, he took me to Whiskey Island / Wendy Park. It was cold and sunny and beautiful and the sound of the water slooshing up on the shore is so comforting to me. We wandered over the the river, Ryan rambling the entire history of the park to me - there is nothing this man does not know. There were two red tugboats scooting down the Cuyahoga - man, those things are adorable! Something so quaint and old-timey about them, and yet they are SO STRONG. A little bit of inspiration to add to my pile.
I then went to work and worked what will be a "full day" for me until treatments are done: 9-2:45. It felt good to get back to doing something that just feels "normal"... or …

Radiation 1

Done. So fast. So easy.
All I felt was a little hot in the britches after. But, hell... I'm used to that. ;)
Was super tired when I got home today after work, treatment and errands, but still no nausea or anything BAD.
This still all feels so surreal, like it's not happening to me.  But I still feel strong and unafraid.
Xxo, Phoebe

Edgewater.

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Turns out its pretty deserted in the morning...

One down

First chemo was so easy. No nausea. Just a lotta pee, thanks to a little syringe full of a drug called Lassix (thus named, according to my nurse, because it LASsts SIX hours).
Because Ryan is just getting over some crappy illness of his own, so he stayed home to avoid sniffling in a room full of people fighting disease. Mum was there all day, helping my foggy brain ask questions.
Sat next to Admiral Jack Hunt, who had just transferred to Moll Pavilion from St. John's Westshore, and gave him my tv since his wasn't working.
Across from me was a woman whose name I never got. She was there getting IV iron (it was BLACK) for an auto-immune disease. When I told her the Monastery of Poor Clares were praying for me, she was all impressed. So, thanks to my step-mom Mary Pat for visiting them on my behalf. They also mailed me a Green Scapular and they gave me, via MP, a Saint Peregrine medal (the patron saint of cancer patients). I'm wearing it with a wish bone charm Daniela Droke…

Chemo 1.2

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So far, the worst side effect has been having to pee 64 times in 5 hours.
This shit is gonna be a breeze for a tough girl like me!  ;)
Xxo, Phoebe

Chemo 1.1

At some point over this past week, I considered live-blogging my first chemotherapy, but that would probably look about like this:











It's pretty uneventful so far. Everyone is nice and my nurse's last name is Nelson, too. That's all for now. :)
Thanks to everyone saying prayers and keeping me in their thoughts. I love you all.
Xxo, Phoebe

Relief

Hello, Good News!

I cannot even begin to express how relieved I am. Ryan's post pretty much sums it up. As the weekend wore on, I began worrying more and more. What if the has cancer spread? What if my bleeding meant endometrial cancer? What if it wasn't actually treatable? What if I had to have a hysterectomy? What if I couldn't work for months and lost my job and, with it, my insurance? What if Ryan or one of my parents had a complete mental breakdown? What if? What if? What if? By the time I fell asleep last night I was so tense and in such an oddball position that I now can barely turn my head all the way to the left. Ouch!
But it was all good. My radiation oncologist gave us the good news at my radiation simulation exam this morning where I also got three new tattoos (tiny dots one on each hip and one in the center) to line me up with the lasers for each radiation treatment.
Also got to meet with an awesome lady to learn about the chemotherapy. That starts tom…

This morning

You could have pulled a gun on me and I would have laughed at you. Nothing I've ever experienced even remotely compares to my anxiety over these test results. I have never been so afraid of anything in my entire life.
But the news is good! She has only the one mass that we knew about and nothing more. Her mother hugged the doctor, which was awkward... but I wanted to do the same thing.
She is so strong and amazing. This will be a bad memory before we know it.

Think About YOU, Too...

After we found out about this whole thing, a dear friend posted something on her Facebook page that truly hit home with me and I want to share with you all here...

I forget her exact wording, but the gist of it is this:

Please do not ignore the fact that this tumor was caught during a routine Pap Smear appointment. And for me, it's not just a yearly exam, but a 6 month exam... That's right! I was at the lady doctor just this spring, and my pap results were NORMAL. Fast forward to last Tuesday, and the doctor could actually SEE my tumor.

So what am I trying to say here? Ladies... DO NOT put off your annual exam. It's annoying. It's uncomfortable. It's a pain in the ass (or nearby areas...). But it's maybe 20 minutes out of your day. And I am now an avid believer in the fact that it can absolutely save your life.

And when you go for that test - make sure you tell that doctor not to be gentle. Scrape hard. Get a good sample. Go to a real gynecologist i…

5 Days

Something I've learned in the last 5 days:  I greatly prefer the word "cancer" to the word "malignant".  The latter makes me cringe.

Words and phrases I did not know existed before 5 days ago: gynocologic oncologist, radiation oncologist, PET scan, endometria, parametrium (and Joe and Ryan's new made-up term: forensic gynocologist).

Google image searches I wouldn't have thought twice about doing 5 days ago (and have been purposely avoiding doing for 5 days): cervical cancer, tumor.

Number of well wishes I've received in the last 5 days: too many to count.

Number of well wishes I've received in the past 5 day from people who really blew my mind: 2 (Thank you Alicia and Shannon...)

Something I have always known but has come into much sharper focus the past 5 days: I have the most amazing family and incredible friends in the world.  I am lucky, I am blessed, I am loved, I am supported and I would be all of those things with or without cancer.

Somet…

PET scan

So, I'm radioactive right now. I even have a card to surrender to homeland security in case I set off any radiation alarms at all those federal buildings and airports I visit on friday nights.
No results yet - probably not til Monday morning. But that's ok. Then if the news is bad it doesn't ruin my fun times tomorrow at the Screw Factory Open Studio event.  But it won't be bad.
PMA!
Xxo, Phoebe

Old things

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More of Phoebe's family has arrived to show support... this time in the form of a few things that belonged to her great grandfather and his family. He was a jeweler in Wooster Ohio.
She went to the zoo with her mother this morning... the last test is at 2 pm. I hope to have some good news later...

Staying Positive

So far, it looks like Ryan has covered the major details of the "up to now" part of all this cancer nonsense.

Personally, I'm in good spirits and aside from having a touch of the cancer, I'm feeling healthier than I have in a while.  (So weird.)

With everything going on, the one-on-one notifications have been slow and difficult, but all I can say is "wow."  I knew I had an amazing family and incredible friends, but I am already completely blown away by the outpouring of love and concern.  Thank you all for that.

My plan is to kick the shit out of this stupid tumor and to stay as positive as I can while doing that.  My phenomenal husband is making that an easier task than I'd have imagined.  And my parents are nothing short of amazing.

As this whole process continues, Ryan and I will both post as much as possible to keep everyone informed.  So follow this blog.  Add it to your blog reader.  Subscribe via email.  Whatever you want to do.

And feel free …