Posts

Showing posts from November, 2011

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

Image
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

Image
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

Image
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

Image
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.

Image
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

Image
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

Image
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.

Image
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

Image
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

Image
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 …

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…

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'…