Monday, November 28, 2011

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


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

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, however, that after that I am officially beyond the halfway point of radiation now!
Hoping that with so much gone awry DURING chemo this time, maybe all the bad energy will be used up and I won't feel like crap the next couple days!
In other news, my parents seem to be having an awful lot of conversations about moving back to Ohio. Which sounds like an excellent plan to me. :)
Xxo, Phoebe

... 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 have gone. They've just been here. In the best possible way. Big stuff and little stuff... like, they just show up and vacuum. That sounds stupid, but how many times in the last month would I have thought to get the vacuum out? Zero - there'd be dog hair up to your knees in here. They came across the country with bats at the ready, ran right at this thing and started swinging. Don't f*ck with her folks. You'll lose.

Anyway... the reason I think we've really made it through some of the worst part isn't because I'm not worried about the future... or I think the side-effects - which are supposed to get worse over the next couple weeks - will magically not get worse. Some of this is behind us because the brachytherapy team on friday took the time and made a real effort to point at clear water ahead; something no one else has done for us... not that they haven't tried (but, at least for me, failed). Yeah, I get it, there are other "possible" outcomes... but now I see the break in the clouds where I couldn't before.

I think Phoebe always did see the break. I had to pretend I did. As a good friend told me "you can't prepare for every eventuality... you just can't. You can't live for the worst-case scenario, because there is ALWAYS a worst-case scenario". Yeah, right? It bothered me that somehow that sentiment seems all glass-half-empty... but it's not. That sums up, more or less, the "human condition" or whatever. I suppose I could get hit by a meteor today. That would suck. I guess I'm not worried about it, but I suddenly understand crazy paranoid people a little better.

Enough rambling. I believe now what she always has - that this will be behind us soon... and I'm back to trying to figure out where the hell all the parts to all these damn projects got to...

Sunday, November 27, 2011

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 was being harassed simply for giving her followers the opportunity to CHOOSE to give something back (or NOT) if so they desired.  Unbelievable.

So imagine, then, my reservations when I came across that article yesterday.  Would people be mean to me if I put up a donation button on this blog?  Could I deal with that on top of everything else right now?

I'm no Blanche DuBois.  I have never really relied on the kindness of strangers (or anyone else, really).  I've spent my life trying to give.  To help.  To love and support.  To just "be there" whenever and however I could.  For anyone.  It was a pretty tough decision to put out there the whole "Hey.  Aside from all the work I'm missing through all of this, I also have to come up with a MASSIVE deductible both this year AND next to get through these treatments.  If you were looking for a way to help, here's a possibility..." thing.  But I did it.  Because in the end, I figured it couldn't hurt, right?

Immediately, I was stunned.  My dad shared the link on Facebook and Linked In, and 24 hours later I was sitting back at my computer in tears reading messages from people I know and people I've never met and watching my Paypal balance inching higher than I would have ever imagined with each message.  In a DAY!

You are all amazing.  I am truly grateful, humbled, and amazed.

Also yesterday, my dad and I drove out to Sheffield Lake, which is where I lived beside him on the lake when I first moved back to Ohio nearly a decade ago.  We went to visit our old neighbor Monica who, when she heard about my diagnosis and the fact that we have been walking by the lake as a means of therapy, offered her back yard to me at any time.  And yesterday seemed like the perfect day with the clear skies and 60+ degrees at the end of a Cleveland November.

Monica has two children battling various cancers and yet, here she was, caring about ME.  She said something that I will never forget.  I am paraphrasing, but it was something like this:  "There is something about cancer patients.  I don't want to say it's spiritual, but it's something like that.  Cancer patients... they just 'get it'.  And as the parent of a cancer patient, you start to 'get it', too."  She also said that you wonder if they will go back to being the same people they were BEFORE the cancer once they are cured, but they never do.  Whatever it is stays with them.

It really hit home.  I DO feel changed.  I feel like, in the midst of all this poo, I have become 100% of the person I always felt I was only part of.  That might sound a little goofy, but I don't know how else to put it.

We spent a good hour, after that, sitting my the water in Monica's back yard.  I put my hands in the cold water.  It was perfect.

I have so many people to be thankful for.  Every day.  Every day, I am amazed.

Love love, Phoebe

PS - There are 3 other new links on the sidebar, aside from the donation button, if you want to get help AND get something fun for yourself in the process...  they're links to my etsy shop, my blurb book shop, and my imagekind print store.  Every penny I make from anything I sell on any of these sites it going directly toward the $20,000 out of pocket expenses I'm going to have over the next few months.  Every little thing you buy for yourself or as a gift, will be a gift to Ryan and me as well.

Friday, November 25, 2011

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 with catheters and Demerol (wheee...).  The aforementioned "worst case scenario" was described in much less horrific detail and in much greater specifics as to how utterly rare it would be that such a thing would even happen.  Like less than a 1% chance.  Way less.  Yay!  And then after the 5 treatments, we wait 4-6 weeks, I see all my doctors again, get exam-ed and poked and prodded and scanned and if all goes as everyone hopes: NO MORE CANCER!

And if not, well... then we find out at that point what's next.  But my plan is to knock this shit outta here by then because I have a plane ticket to Rome that I'd rather not have to push back.

Xxo, Phoebe

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 Thanksgiving.  And not just because I have cancer.

The family and friends who have been here for me through this - be it through help, hugs, gifts, cards, thoughts, soups, emails, blog comments, facebook messages... they were all there before I had cancer and they will all still be there when it's gone.  The strength I have to get me through this I've had all along and if nothing else, I will probably be stronger when it's all over.  The love I feel for every person who touches my life has always been there and will continue to be there.  I will always be someone who smiles at strangers on the sidewalk and sandwich builders at Subway and checkout girls at Target.  And now more than ever, I will be aware of these things every day of my life.

Because I AM grateful every day for all that I have.  For my strong, supportive, incredible family.  For my beautiful, talented, wonderful friends.  For my gorgeous, brilliant, loving husband.  For my idiot dogs (who just ate my Sunset Memorial Park letter AND a box of Imodium...ugh!).  For my fantastic home.  For my understanding and interesting job.  For my ability to go to Target and buy a new bathrobe for no reason other than it was gray and on sale and really, really soft.  For my ability to make beautiful things.  For my ability to share what I am going through here and inspire those that I love and those I don't even know with the things that I share.

I'd go on and try to list ALL of the things, the people, the experiences I am grateful for, but really... what I've realized is that there is so much to be grateful for every single day.

My dad's former AA sponsor used to ask him every day what he was grateful for that day.  And over the past 10 years, he's asked me the same question many times.  And I never really thought about it before.  But I'm pretty sure that not a day of my life to come will go by without me thinking about it now.

So, what are YOU grateful for today?

Xxo, Phoebe

Thursday, November 24, 2011

Yesterday

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 more than I realized it would.

The fact that that came along with the onset of major fatigue probably didn't help, either.  I mean - I am POOPED.  Like, constantly.  I got up yesterday after 9+ hours of sleep, took a shower, and felt like I needed a nap!  What is that?!  I barely made it through 4 hours at work before having to throw in the towel.  Stuff like that bums me out, but I keep trying to accept that it is all a part of my body healing itself.

Another part of what I truly believe i healing me is the walks I am taking with Ryan every day that we can - especially when we can go to one of the lakeside parks.  I have always loved the water and Lake Erie in particular holds a dear place in my heart, as it is where my grandparents used to go every day to watch the sunset together after my Grandpa Joe got sick.  When I moved back to Ohio, I got to live right on the lake for a year or so, and hearing the waves from my own bed was amazing.

Now, I see and hear those waves as something else.  They are what I visualize when I am in treatment.  The cold, gray water crashing into that stupid tumor and breaking bits of it away and washing it back out with all the other crud and garbage littering the lake.  That may sound hokey, but it helps me to see the water that I love as the thing that is curing me.  Yesterday, on our walk at Edgewater, the lake was WILD!  It was windy and the waves were huge!  (There were even people windsurfing!!!)  Hearing and seeing my lake crashing against the breakwall and shooting cold spray way up into the air made me feel STRONG.  I held onto that feeling as long as I could.

When I got home, my mum and dad had cleaned my house and done my laundry.  (I cannot even begin to express how grateful I am for all they are doing for me.  That is an epic post in and of itself that I will need the better part of a day to compose!)

When Ryan got home, we had a really good talk.  He is scared.  Well, no.  That is about the biggest understatement ever.  He is friggin' terrified.  Ryan takes care of me.  He fixes things and makes sure that everything is ok.  And for the first time since the very day we met, I have a problem he can't fix.  And it's making him crazy.  I have to express my sincere love and gratitude to Ryan's dear, brilliant, longtime friend, Doug.  From what Ryan told me yesterday, his conversation with Doug helped him more than anything he's heard since this began and I could not be happier that Doug was so very there for him.  Thanks, Doug!

I was actually hungry last night for the first time in days, too.  Food just does not appeal to me at all right now.  I am generally not hungry or too nauseated to feel hungry.  Even when I do feel hungry, nothing sounds appetizing.  But last night I even went back for a second helping.  Hopefully some of the weight I'm losing will come back if I can get that to happen more often.

I guess that is enough of an update for now, yeah?  It is Thanksgiving, after all, and I have stuffing to make so Ryan can get that turkey in the oven.  I'm looking forward to today.  Tattooed Dad arrives back in town this afternoon.  We've got good food and low key hanging out planned with 3 of my parents, my aunt, and one of my very best friends in the world, Mallorie.

And talk about epic posts that will take a day to write... I cannot even begin to tell you how long the upcoming Thanksgiving post will be.

Love to all, Phoebe


Tuesday, November 22, 2011

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 likely did TEST normal and when the results are normal, the doctors don't really look at them.  The letter just goes out.

- The cancer is actually officially a Stage IIB, not the IC that we originally thought.  It's staged that way because of how the tumor is partially in the vagina, not because it had spread to the lymph nodes.

- There will be no exam to see the progress of the treatment until the treatment is actually DONE.  This bothers Ryan, but we are trusting that the course of chemo and radiation they have prescribed was chosen for a reason.

- Best case scenario, which everyone seems to think will be the case, is that after the current treatment and subsequent internal radiation treatments, the cancer will be GONE and we will know this for sure a few months AFTER treatment is completed when I return for another PET scan.

- Worst case scenario scares the shit out of us all... but no one seems to think that it will go there.  All I'm saying is it involved the phrase "much more than a radical hysterectomy" and the word "colostomy".  ::SHUDDER::

- They're going to add another drug to my next chemo to try to help with the nausea I've been having.  Yay!

I'm sure there was more, but like I said earlier... foggy head.

I missed work today because I was feeling so sick and so tired.  Kind of depressing, but hopefully I'll be good to go tomorrow.  And with that - I am going to bed.  This is probably the latest I've been awake in weeks.  I blame Storage Wars...

Lots of love to all, Phoebe

Monday, November 21, 2011

Chemo 3

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 to get really carsick.  And of course, it was the one time in my entire life that I had forgotten my water bottle and therefore could not take my anti-nausea medication.  Ryan felt terrible for choosing to take the cool car, but how could he have known?  How would either of us have known?  I felt fine.  I hadn't been nauseated in two days.
Well, add bumpy Ohio roads and a less than smooth-riding 70's muscle car that is more than a a little fume-y... recipe for UGH.
Ryan felt bad.  I was devastated.  I was sure I wouldn't make it though the family dinner.  Sure that I would throw up in his parents' driveway.  Sure that I'd be unable to ride in any car for any length of time for the rest of treatment.  No work!  No shopping!  No Christmas!!  Sobbing and swallowing in the crisp country air, I looked up at my beautiful husband.  He said "You're fine.  You're handing this really well.  You are SO STRONG.  This was just a mistake and now we know."  He hugged me and we went inside.  I took Zofran and Ativan and waited.
Eventually I was fine.  I even managed to (over)eat, as one should on Thanksgiving.  Turkey.  Stuffing.  Potatoes.  Beans.  Rolls.  Cookies.  Delicious.  And nice.  Good to be around the family and just hang out.  I'm still worried that getting down there for Christmas may not be a possibility for me (the ride home in my parent's newer, smoother, cooshier car still made me sick later that evening, just not AS sick...) but we will cross that bridge when we get to it.

Every day is going to be a new adventure.  I'm sitting in Chemo #3 as I write this and when I'm done today, I will only have 3 more chemo sessions to go.  A half-way mark for something, reached.  Yay!  My dad (step-dad, Gary, this time... [since I call them both "dad" I will try to differentiate somehow for those following along]) went through cancer treatment himself a few years back, and he and my mum tell me the same thing... every day you learn.  Every day you feel different.  There's no way to prepare.  No way to make plans.  Just keep waiting and seeing and above all, believing.

Even with my first real negative experience down now, I am remaining positive.  All I can say is "That's the only choice I have."  Now, I know that there IS another choice, but it's just never been the one for me.

XXO & PMA, Phoebe

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 cervical cancer.  And my test came back normal.  But I have cervical cancer.

Wait, WHAT?

Brings up some questions, doesn't it?  My first question is: Did I have cancer 7 months ago, then, at the time of my last "normal" pap smear?  And I guess my next question is... Do these things work at all??

My mum told me a story about how her gynecologist learned that she saved a woman's life by doing a particularly "indelicate" pap smear years ago that did find ovarian cancer early enough to cure.  She told my mum that ever since then, she is never "gentle" when doing a pap.  I have to wonder, were the doctors doing my paps being too delicate?  Did the tests just not work because of how much I was bleeding?  I don't know.  I will probably never know.

I plan to ask the doctor about this during my appointment tomorrow.  I'll let you know what I find out.

Xxo, Phoebe

Sunday, November 20, 2011

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 get going.  Lots to do.

Love love, Phoebe

Thursday, November 17, 2011

My dad.

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 yesterday, when I got a picture text of the tattoo he got. His first. For me.
I love you, daddy.
Always, Phoebe


Tuesday, November 15, 2011

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

Monday, November 14, 2011

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

Sunday, November 13, 2011

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 on some boring errands (take boots to the cobbler, buy dog food, etc.) but it was so beautiful and autumn-y out and I was just happy to have a day that did not revolve around cancer this or treatment that.

Today, both mum and dad (AND our friend Nora, who happened to be in town from Chicago) helped with a LOT of house-cleaning and furniture re-arranging.  Not only is the new media room coming together, but the living room got a total re-vamp and is ready and waiting for the Christmas explosion to come out of the closet!!!

It was another beautiful day, despite the wacky wind, and again, I am just so grateful for all of the wonderful people in our lives.  Thank you all for your kindness, your support, your love, your generosity and your patience.  We are some of the luckiest people alive.

Love love, Phoebe

Friday, November 11, 2011

Lakewood Park

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 right now we need all the help we can get in that department!

More family

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 something that WAS normal BC (before cancer). Funny, yet again, how it took this for me to realize that I really LIKE doing my job and that the people I work with are truly wonderful people, so full of love - not the kind of co-workers one might have just anywhere.

After my first regular radiation appointment, I went to home to find in my mail a letter from a cemetery, suggesting I start planning for my "future". It was dated 2 days after my diagnosis. Ryan was livid and has written a strongly worded letter to Shithead Memorial Park in North Olmsted.

Shortly after that, I had my first breakdown/freak-out/cry/scream thing. (I should probably come up with a shorter name for these, as I imagine it will not be the last one.) I was lucky to have my mum there to intervene and attempt to put it in perspective and make sense of it. The support I have through this shit is pretty incredible. I don't want to say that I am lucky to have cancer, but cancer has definitely opened my eyeballs to how lucky I am in the family/friends department. I meant - I WON that lottery. Powerball AND Mega Millions all on the same day, for sure.

And speaking of support... after dinner, Ryan, mum and I all headed over to The Gathering Place to go through an "orientation" and see what their whole gig is about. A lot of it sounds really awesome, especially their services for the caregivers, but personally... I felt absolutely nothing there. Maybe I'll end up wanting to go to Tai Chi or yoga or get a massage or something, but I cannot picture myself in a support group setting. I fear that my sensitivity to other people's emotions would make this entire thing a thousand times worse for me, rather than better. They do one-on-one counselling as well, but again... I have not really even figured out what my questions, my worries, my fears, my ISSUES are with this whole thing yet. So what would I talk about?

Here is what I know: not beating this cancer is not an option. It's never even been on the menu, as far as I am concerned. There was never a moment, when the doctor came in to discuss my treatment options, that I was not 100% "IN" on doing everything they recommended we do. I will beat it. I will make the transition from cancer patient to cancer survivor. And I know that I can do that because of Ryan. And my parents. And my friends. And my family.

Love Love, Phoebe

Wednesday, November 9, 2011

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.

Turns out its pretty deserted in the morning...

Tuesday, November 8, 2011

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 gave me years ago, stating that it reminded her of how I represent HOPE to her. And today, mum added to my chain a charm that says "love forever".
I am so loved. So blessed. So unafraid.
Last night, my friend Kristin asked if I'm really as strong as I appear to be. I can't recall my exact response, but the gist of it was positive and her reply I will carry with me forever:
"you are fucking amazing."
<3 Phoebe

Chemo 1.2



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

Monday, November 7, 2011

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 tomorrow. (SO FAST!) We got all of our questions answered (no hair loss - YAY!), 'scrips for anti-nausea and anti-anxiety, piles of info, and a quick tour of where I'll be spending 8 hour days once a week for the next 5 weeks. (Everyone in there was so old... sad.)

Then my first radiation appointment is Wednesday afternoon and I am planning to go to work at least for the morning Wednesday and then hopefully every day either before or after radiation, depending on when they schedule my regular visits!

I'm still feeling very positive (well, now that we know the test results) and one thing keeps playing through my mind over and over. "Grace under pressure." THAT is who I want to be through this.

Love to you all, Phoebe

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.

Sunday, November 6, 2011

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 if you can. Planned Parenthood is not my favorite option, but if you don't have insurance or are on a limited income, they are a better choice than doing nothing. Seriously. Please. DO NOT do nothing.

For years I blew off my annual exam because I didn't have the money. Well, whatever $100 is a lot cheaper than the scan I had on Friday that cost more than $10K!!! Money is not an excuse. And three years ago I finally got back on track with my exams, and look how lucky I am that they caught what they did now.

Please. My girls. Take care of yourselves. If you have not had an exam in the last year, make an appointment. Think of it as the best possible way you can support me right now.

Thanks! Love love, Phoebe

Saturday, November 5, 2011

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.

Something I did not realize AT ALL 5 days ago: I truly am the person I have always wanted to be.

xxo, Phoebe

Friday, November 4, 2011

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

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...

Thursday, November 3, 2011

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 to call us, text us, email us any time.  We will respond whenever we can.

Thank you all for your love, your support and for being a part of our lives.

Love, Phoebe

Up to now...

Here's where we are... On Tuesday Phoebe went to the "lady doctor" for a routine checkup. The doctor panicked and sent her across town to an oncologist... who panicked... and sent her to the hospital. After every test they could think of, a dozen blood draws and a night without any sleep we got the bad news on Wednesday. Cervical cancer. About 5cm in size.

She was upset. duh. I was upset. We made the difficult mom and dad phone calls. Her mom flew in from CO immediately and is staying here in town (which is awesome!). Her dad was in town by accident and so was already at the hospital. Her other dad is dealing with some health issues of his own, but is here in spirit. Her aunt came and stayed for hours with us in the hospital. My folks are nearby and are ready to do anything they can. Our families are fantastic.

We are lucky to be in a city with one of the best hospitals in the world. The Cleveland Clinic's outpatient cancer treatment center also happens to be right in our neighborhood (win!). The treatment plan is still under construction, but the basics are: five weeks radiation and chemotherapy. The radiation will include targeted external radiation and then, as the cancer shrinks, some amount of implanted radiation therapy... which I guess involves getting a little metal radioactive "pill" to sit right on the tumor for a period of time. We met with the radiation doctor already, he spent quite a bit of time explaining the process and the side effects. He was very good and made us both feel much better about that part of all this.

There is still one more test she has to do tomorrow which will determine conclusively if the cancer has spread. The MRI and CT scans she has already taken both indicate that it has NOT spread, but this last test (a PET scan) is designed to specifically target cancer and will show anything else that we might need to worry about. At some point after this test they will "stage" the cancer and determine for sure the course of treatment.

The PET scan is ridiculously expensive. The insurance company wanted to think about it for seven days. I called them and explained how that wasn't going to happen and eventually got a direct number for their radiology guy which I forwarded to the NP at the oncologists' office... who then got the test approved. I assume this will not be the last discussion I have with the insurance company.

If this all goes well she will begin treatment on Monday.

She is really doing pretty great. Having friends and family around has helped already and I'm sure will be a lot of what gets her through this. We are both very hopeful about the outcome. She is otherwise in great health and very good spirits.

I have already promised to buy her a Sammy Hagar wig if her hair falls out.

This blog...

So... if you've found this you know Phoebe was diagnosed with cervical cancer on Tuesday (11/1/11). We have created this blog for two reasons... first because, since this happened, both of us have been on the phone CONSTANTLY, explaining the same thing to dozens of people. Spending time talking to friends and family is great, but if we can get all the information in one place (here) and say it once it will save us a hell of a lot of time... and we can talk about other things... like anything else. The other reason this blog exists is just for us to write about what is happening in some sort of attempt to deal with it as it comes, and hopefully after some time see how far we've come.

Incidentally, if seeing our posts elsewhere and finding this blog is the first you've heard of all this... it's not because we haven't TRIED to call everydamnbody... we have. I know we missed a lot of people! Don't feel slighted because we gave up and are doing it this way. It'll save us so much time that we need for other things... but with that said, do feel free to call either of us. Nobody died. Nobody is dying. We're here, we're OK, she is going to whip the shit out of this thing and we're all going to help. Right?

Bookmark this page... we will keep it as current as we can!!