::sigh:: the system

I’m trying to remain very positive about the care I’m receiving right now.  Luckily I have health insurance and I live close to very good medical facilities.  I am very grateful for that.  I just get a little frustrated getting shifted through the system.

The doc I saw on Tuesday night ran a bunch of new labs.  Apparently my white blood count was pretty high so she called me Wednesday afternoon and told me to go into the ER.  She said she’d call ahead to refer me for a scan.
So I went.
Still not feeling well and super not happy to be waiting in the ER for hours and hours.  The ER doc wasn’t really sure why she referred me in.  He basically said, “well, you have cancer”  Um, yeah.  Know that.
I guess they wanted to make sure I didn’t have some kind of infection starting up somewhere.  Which makes sense.  But 7 hours and $100 later? Kinda bites.

We met with a medical oncologist today.  She went over mostly what we already know.

And by the way, for those of you who are not familiar with cancer, I’m sure you’ve at least heard of cancer staging?  If not, Google it.  We already knew this was likely going to be the case, but my cancer no matter where the origin at this point is stage IV. I’m pretty sure there’s very few phrases you can say to a person that is as scary or devastating than “You have stage IV cancer” Luckily I’ve had some time to let this soak in so I didn’t fall off the table or anything when she told me.

She thinks it’s likely colon cancer and asked why we hadn’t had a colonoscopy yet.  I’m pretty sure I actually rolled my eyes so hard you could hear them.  It’s the one thing we’ve asked about a few times and no one has said we needed it yet.  Hmmph!  So she put in a referral for us today and they called me this afternoon to schedule.
“The earliest available appointment we have at any of the facilities is April 22nd”.
Are.  you.  shitting.  me?????
I seriously almost lost it on the poor guy.  I wanted to just scream “I HAVE STAGE 4 CANCER MOTHER FUCKER DO I LOOK LIKE I HAVE THAT KIND OF TIME”?
But I realize it’s not his fault. So I now I’ve been playing phone tag all day trying to get something done.

We switch health systems March 1st.  Luckily the oncologist I saw today was very understanding of that and even offered to call her oncologist friends there to help get the ball rolling.  Also very lucky that I happened to be in this system before.  I called today to see if I could set up an appointment for the first of March and it’s already done.  She even set up me so I could create an online profile with their online system to access all of my information.  I’ve already sent an e-mail to my primary to let her know what’s going on to see if there’s any way we can get this moving so we don’t delay treatment any longer.  So far, I’m way more impressed with this new system.  A blessing in disguise I think.

As for me, I’m doing OK.  Much better than the last few days.  I still get pretty tired.  Dr gave me Norco for pain and well, that’s awesome 😀  I only take it at night though to help me sleep.  I want to be as functioning as possible during the day.  It’s hard to plan things because I never know how I’m going to feel, but I’m going to make it a point to start getting to yoga and swimming.  If I can get at least those things in I’ll feel accomplished.

Thank you all again for the birthday wishes and all of the support and love you’re sending this way.  I really couldn’t be doing all of this without it.  ❤

What a birthday!

My birthday started out pretty great.  I enjoyed hearing from everyone and had a nice relaxing day.  Unfortunately about 3pm I started not feeling well.  And I went down fast.
Fever, chills, pain.  Just yucky.
This was the sickest I’ve felt since all of this started and we called the nurse to see what to do.  Luckily they had a doc appointment for me.  Not the way I really wanted to spend my birthday.  There were a few past birthdays where I could’ve ended up in the hospital (ie my 21) but this is the first one in 39 years.  Well, second one.  Guess that first birthday counts 🙂

MJ blew up a birthday balloon for me 😀

Today I was feeling a little better but still kinda bleh.  I had a nice visit with my friend Tracy and was enjoying the day until the doc called about concern over the labs I did last night.  She advised that I go to the ER.

So here I am.

Thrilled to pieces.

Luckily I found wi-fi so I have stuff to do now to pass the time.

Strike a pose!

OK warriors, get ready cause I officially have cancer.   -No, strike that.

I am temporarily challenged by cancer.

I was supposed to hear from the doctors today.  Waited and waited.  By 3:00 I couldn’t take it anymore and called.  I was put through to a front desk who said they would have one of the nurses call me.
I waited more.
After an hour I decided to call back again, was transferred back to that same department and no one picked up the phone.  I was starting to fume.
I called back again and wouldn’t accept a transfer.  I had the guy get them on the line for me.  The lady who I talked to earlier said she gave them the message and to wait.  That’s when I started to unleash.  I asked if there was another doctor I could talk to.  Basically I wasn’t going to let her off the hook.  She transferred me through to the nurse who I’ve talked to a few times before.  I was sobbing at this point.  I explained that they told us we would know by today and that’s it’s been a month already and I can’t take it anymore.
She told me the docs were in surgery all day Friday and today and that’s why they didn’t call yet, but that they would call me tomorrow.
I sobbed even harder.
“They’re going to call on my birthday?”
That got her.  She paged the doc and he called me 1/2 hour later.

He explained to me that I indeed do have cancer.  The mass they tested from my liver is malignant but not ovarian.  It’s most consistant with a gastrointestinal cancer. So far all the scans I’ve had haven’t shown any masses anywhere else.  The only thing they couldn’t see is the colon.  I’ve been referred to another oncologist now and my guess is the next step will be a colonoscopy.

I knew I would have feelings upon hearing the news and I did.  It’s hard when there’s definite reality.  But I’m having even bigger feeling about the fact that it may be colon cancer.  I fit all of the risks for it.
It’s difficult to think the things we did when we were young can totally come back and bite us in the ass. Literally for some of us.  The thing is though, if you buy enough lottery tickets, eventually you’re going to win.  It may be a little or you may win big.  And I certainly bought the tickets.  Every cigarette I smoked, every fast food meal I ate, every drink I had, every day I decided to lie around and not exercise.  Those tickets all added up.
I’m not beating myself up.  It happened and there’s nothing I can do to change it.  The frustrating thing is I was on my way to changing all of it.  Just didn’t matter.  I had already bought the winning ticket. And I got the big prize.
It’s something I would like all of you to think about.  Pick up a fast food meal? Not a big deal, right?  Have a few more beers than you planned?  Meh, it happens. Drink soda every day? Who doesn’t?  But keep in mind that you are buying a lottery ticket every time you do these things.  It may not get you cancer, but you could still be in the running for something.
Do your homework and get checked up!
—This rant was brought to you out of all the love I have in the world for all of my family and friends ❤

I was looking for the video of Pat Benatar’s “The Warrior” but all I could find were cheezy ones that people had made.  But while looking I came across another awesome song from one of my all time favorite 80’s movies and it seemed even more inspiring to me tonight.

Here’s to Good Friends

I had a little birthday shindig yesterday and it was such a great day!
I decided last minute to throw a game night and we had at least 20 people come and join us.  I had a blast and it seemed like everyone had a good time as well.

A little while ago I posted on Facebook that I wanted to do something fun or funny to keep  all of the medical appointments as light and entertaining as possible.  I got a bunch of really great suggestions.  Here’s a few that I will have to try and slip in:
1. From my good friend Sarah “Try to use a ridiculous vocab word in a sentence while keeping a straight face, like carperpetuation or kattywompus . . . something to make them laugh.”
2. From my sister Teri “Take a different kind of juice in with you each time and when they ask for a urine test, poor the juice in the cup and drink it or act really offended when they look at you weird.”
3. My buddies Adrienne suggested a sequined glove, Jeff said a smelly shoe and Erica a monacale. Especially if I need to look at labs.
The ones that I really liked that I thought would be the easiest to consistently pull off was from Melissa who suggested handing out stickers and Bethany who suggested well placed temporary tattoos.
I mentioned this to the party guests if they wanted to make a donation to the cause in lue of a regular gift and boy did they come through!

I’ve got all kinds of stickers and tattoos!  Plus some groovy glasses 🙂

Thanks to everyone that came and made it a really great night!
So great in fact, that I think I overdid it just a little and was in bed all afternoon.  Doh!  It was so worth it though.

Sooo, on another note – tomorrow should be the day.  Hopefully.  Finally.
I’m nervous.  Ready to get on with whatever, but I’d be lying if I said I wasn’t a bit scared. Thankfully I’m so worn out from yesterday I should still sleep like a baby tonight.
I will post as soon as I know something.  Stay tuned and get ready to pose…

Not today

No results yet.

I wasn’t expecting it, but I was kinda hoping.
I was pretty much out of it most of the day.  If I had to describe how I felt it would look something like this…

The nurses called to check on me and I told them I was pretty zonked out.  They said it was probably from the medication they gave me yesterday.  Hopefully this will wear off by tomorrow.  I have a birthday to celebrate!
Having friends over to play some games.  Like to join us?  Let me know 🙂

So I get to spend one more weekend in cancer limbo with the unidentified visitor.  Luckily I will have plenty of distractions.

Biopsy day

I was just giddy this morning.  Felt more like we were getting ready to go on vacation somewhere rather than going in to have a needle jammed in my side.  It was just exciting to be DOING something.  Moving forward.

I was in pre-op for a couple of hours waiting for the procedure.  I did get a little nervous when they finally wheeled me down.  Not because I though it would hurt, I just wasn’t sure what the whole sedation thing was going to be like.

Once I got all settled on the table I expected they would tell me when they would give me the goods.  I sat still and stared at the pretty tropical mural painted on the ceiling.  I started to feel nice and warm.  Very comfortable.  Didn’t seem like I was there very long and they were done.  I don’t remember a thing.  Just staring at that mural.  Didn’t feel anything.  It was nice.  Weird that I was awake the whole time though.

I took this picture while I was waiting for MJ to pick me up.  The picture itself was rather reflective of how I felt.  Felt good, but was still a little fuzzy.

They monitored me in post-op for about an hour and I was free to go home. I was a bit loopy for a few hours.  Probably should’ve did a blog post then.
I did start to have a bit of pain in the afternoon but nothing that a couple of Tylenol couldn’t help.

Doc said we should have results as early as tomorrow but maybe not until Monday.  I’m OK with that. MORE than OK. I expected to have to wait a whole week, so I’m pleasantly surprised at even Monday.

I must admit that it’s going to be a little weird to know.  Strange huh?  I’ve lived with this unknown for weeks now and while it’s driven me crazy, I’ve also come to a comfortable place with it.  While it doesn’t change what it is, giving it a name will start a new process for me.  I will need to start a new relationship with this “named” thing.
There’s also knowing things that I maybe don’t want to know.  Like, say, this ends up being pancreatic cancer.  The reality of the prognosis of that type of cancer is a little more difficult to deal with than possibly ovarian or colon.
It’s weird. It feels like I’m taking a big spin on the cancer roulette wheel hoping for a “good” cancer.  But lets face it, none of them are going to be any kinds of fun.

Small victories and goodbyes

Tick tock tick tock tick tock…  this seriously has to be the worst part.  Yes, ask me that again mid chemo, but this wait is totally doing a number on my psyche.
Liver biopsy Thursday.  YAY!

I went to see my general practitioner today to follow up, ask a few questions and really to say goodbye since I’ll be switching systems.  It was a little bit of an awkward visit.  She seems genuinely sad about what’s happening with me.  I’ve been seeing her for a couple of years with strange ailments that may or may not be related and I wonder if there is a little bit of guilt for not catching things sooner?  Although I wouldn’t even know how since the gyno who did my exam the beginning of December documented “NO MASSES”.
She’s around the same age as I am and maybe that is striking a chord with her.  She’s told me a few times, “you’re so young” but in a good tone, like that’s helpful but still looked at me with very sad eyes.
Or maybe it’s because I was a pretty big mess when I first started seeing her.  Morbidly obese, drinking more than I should’ve, eating complete shit.  She watched me turn all of that around to losing the weight, fixing my diet and completing marathons.  It is kinda a bummer to have to face all of this now after all of that.
I am sad to be leaving her care.  She’s a great doc and has always listened to every weird thing I’ve had come up along the way.  And she obviously cares.

As I was waiting for my appointment my phone started blowing up over Proposition 8 being ruled unconstitutional.  Yes!  Another small victory.  Of course, this doesn’t mean MJ and I can get married any time soon.  More appeals and more waiting.  This really got me thinking today though.
MJ and I have been very lucky in any medical situations we’ve had so far.  I assume much if that has to do with where we live.  She has come with me to visits and we’ve had no problems at all.  We did have one of the gyno nurses ask “if my friend” could wait outside until I had my vitals done. You know, cause doesn’t every woman bring her friend with her to the gynecologist?
I doubt we will have any issues in the new health system either, but this is one of the things about gay marriage people don’t understand.  We wouldn’t even need to worry if we were legally married.  Religion or beliefs or whatever it is that bothers people about it aside, can’t people understand that?  There are places that this is still a problem.  And even though MJ and I live in a rather liberal place, we still have fears of it being a problem.  This kind of thing is the last thing you want to worry about in our situation.
Not to get all “preachy”.  I know there will be at least one person who reads this that has voted against or will vote against gay marriage and I’d like for you to take all of this into consideration.
Whether the law says so or not, MJ and I consider ourselves married.  We were married in our church and we live and raise our kids just like any other family.  I don’t need for you to agree on that.  I just need to know that my family will be allowed to be by my side when I need them the most.
::::stepping off soapbox::::