Round 1

So the first thing I forgot about Taxol, is that through some weird paradox, you actually feel better than when you started. Or one of the accompanying drugs helps out immensely. I’m pretty sure I remember that changing, but for right this moment, my pain scale is about 2. And the sad face for this moment is:

I still can’t sleep.

I’m thinking of making bagels but the bread machine is loud.

Zucchini bread in the crockpot maybe? Hmm.

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The plan. The new one.

I’ve been trying to write this post for days. The drugs they have me on for pain make me a terrible typist. I’ve written a lot of sentences that look like this: so the tumor fmooisd dmklsmkkkkkkk.

1. The tumor is pretty close to triple negative, which means theres no use trying to treat it hormonally.

2. In grand tradition, we are going to throw everything we have at it.

3. Get a port tomorrow and start zometa and taxol,

4. The next session will add the ever controversial avastin.

So I’m starting round 2 with the drugs I ended with.

Oh yeah. No more tamoxifen, Since it didn’t really do anything.

I am Moxie.

It’s too early for the plan post. That’ll show up Tuesday. Ish.

I’ve spent three nights in the hospital, mostly coming to terms with physical pain, and learning how to type with a blood oxygen monitor taped to my third finger. While I’ve been here,this silent group of ninjas have been working behind the scenes.

The first time around, I had no idea what to do, so being, me, I searched out my own support network. I had my treatment group on YSC, the Moxies, brave brave girls who all got cancer way too young and many of whom are gone too soon. I had my mothers with cancer, where losses have also been devastating. I had my knitting groups, wickedly smart women who to this day make me laugh on Facebook although I don’t make it to too many knit nights. My church. Family and friends who would just sit with me because I couldn’t do anything else. Moms and dads who would take my kids on a moments notice, family members who drove me to way too many doctors appointments. Planinas who gave me the gift of music when i thought the world was ending. And now all these people, and including, my Stott family, my Shelton Family, my Monterey Family, my neighborhood and I’m sure other families I’m forgetting have been stepping up, offering help while I’ve been in here as if no time has passed. As if I haven’t missed 1800 knit nights. Or it hasn’t been 20 years since high school. Or last week since rehearsal. 🙂

I am not ok. I have a ways to go. Still need the Plan.

But I am a Moxie.

And so are you. You are my Moxie Ninjas. (unless you are an original Moxie, in which case you can choose.)

You help me to know that no matter what the Plan ends up being, it’s going to be ok.

(Heartfeltblog post tip#2. Take the oxygen hose out of your nose if you’re going to cry. It’s drippy and messy.)

And yes. That’s the oxygen monitor that is going to go off now because I took off the hose. And the fact that it’s on my middle finger does not escape me. Take that bone mets.

I’m a Moxie.

Pain

So the biopsy is scheduled for Friday. This is important because the hormone receptors can greatly increase the arsenal of things we can throw at this. My tumors responded well to chemo last time and it would be good if they could do the same this time around. But truthfully, I know very little right now. Once we have the biopsy I’ll meet with the doc to determine the best plan. Now that some of the shock and awe has worn off, I’m ready to start treatment again. I’m it going to lie. I am in a crap ton of pain. I was managing it for a bit alternating Advil with Vicodin. But now I can’t take Advil until after the biopsy. It’s going to be one heck of a biopsy I guess. They want a big chunk of that tumor and I’ll be sedated to get it. So the meds are moving up to Percocet, so if you’ve been waiting for a time to sell me some swamp land in Florida, now’s your chance.

Worst Monday ever.

I spent most of today in a Vicodin hazed denial waiting for my oncologist to call. And she did. And it’s bone mets. In my sternum, my ribs and my spine. I am devastated. I am angry. I am frightened. And I guess I’m going to need more hats.

Calm before the storm

So I’m in this weird place between calm and freaking out. Tomorrow I have a PET scan that will change everything.

I suppose I should start at the beginning. Sometime back in May I noticed that my chest hurt when I bent over. It was brief and I tended it forget about it.

By June, my chest would be tight, so I thought it was iron bra syndrome which is very common with reconstruction. Ibuprofen gave it some relief but it kept getting worse.

The last week of June I went to my PCP (primary care provider) who diagnosed me with costochondritis. I started take round the clock NSAIDs, which helped for a time. It got worse through the month of July. I saw my oncologist who ordered a PET scan to rule out mets to the lungs which my insurance denied. I’ve written about my anxiety before. Well I think it got the best of me the Monday after the scan was denied and I ended up in the er where they gave me a ct scan to check for clots.

By the next Monday, the NSAIDs weren’t doing anything for my pain and the lack of sleep was taking its toll. This is the part where I get all gushy about my PCP. She basically took charge and said enough is enough. She immediately gave me some low dose meds for my anxiety which is pretty much the only reason I’m holding it together right now. Prednisone for costochondritis and pain killers so I can finally get a decent nights sleep.

She tracked down that ct that was done in the er and had it reread and sent to my oncologist. Unfortunately, it showed a suspicious hole behind my sternum and maybe some lymph node activity. Well, my oncologist got on the phone with my insurance and finally got the PET scan approved for tomorrow to look for bone mets.

So no matter what the PET shows tomorrow. There should be some sort of plan in place by Monday.

So that’s where I’m at.

Fear

So last night I got dizzy. Like I think I’m going to pass out, my heart is racing, I should probably pull over the car dizzy. Then it happened again this morning. Twice. I went to the doctor and after ruling out a DVT (tamoxifen makes a girl high risk for those), we still don’t have a good answer. The best guess is my naturally low blood pressure dropped even lower causing the dizziness. I guess that happens sometimes.

When I was in high school, I had dizzy spells like this. I carefully practiced not being afraid, breathing deeply and ignoring my hypochondriac tendencies, until I pretty much had it under control by my young adult years. I could get by with, “it’s probably nothing.”

Until it wasn’t nothing. And all that calm was gone. There are so many possible side effects from the treatment, even this far out, and the medicines, it can make your head spin. So now I freak out. Every time. Because I had cancer. And because I have a family. And so so much to lose.

It’s been 4 years.

So when does the fear go away?

Say a little prayer.

I know I should be boycotting the Internet today or something, but I keep scouring it for news of Susan, Toddler Planet. She’s been through so much this year and we all need for her to get better. For a million reasons. The most important being a couple kiddos she calls Widget and Bear. So if you have a moment and are of prayerful nature, could you send one her way?

Facebook BC Awareness Games and the 31 Day Project

It’s getting near October again and so the Facebook Breast Cancer Awareness games are afoot.  I’ve written before how I feel about awareness things.  Many companies make money off Breast Cancer Awareness by slapping a Pink Ribbon on their product while actually donating very little to the search for a cure.  Yes. A Cure.  There isn’t one, by the way.

But I digress.

So here’s Breast Cancer in a nutshell.

1.You’re diagnosed.  You’re scared.  You have disfiguring surgery.  This makes you somewhat sensitive about your own body.

2.You have chemo.  It makes you sick.  It creates lasting issues with your reproductive system.  For many women, getting pregnant post-cancer treatment is impossible or ill-advised.

So here’s where I’m going with this.  The last two Facebook Awareness games have been somewhat distressing for many of my cancer friends.  When we were asked to post our bra strap last year, we didn’t know what to put.  Many of us could no longer wear them.  Back to issue #1.  Now this year, the game makes it look like you are pregnant.  Enter issue #2.  Part of my grieving process post treatment was the realization that I shouldn’t have any more children.  So grateful for the ones I have, but I wanted to make that decision.  I really hate being told I can’t do something.

Also, an awareness game where you’re not allowed to tell anybody about it except by message isn’t really awareness, is it?  And finally, awareness only goes so far.  It doesn’t lead us to a cure.  Does it make women go get mammograms?  Maybe.  That would be good.

I think if you ask most women who have had cancer, it’s not a fun game for us.  It’s sort of like parading in front of us  the things that we no longer have in the name of awareness. And to add insult to injury, many of my friends who have spoken up have been accused as “not having a sense of humor” or “spoiling the fun”.

I’m sure who ever started it had the best of intentions.   But there’s no real information.  1 in 8 women will be diagnosed with breast cancer in the course of their lifetime.  Also, men can get breast cancer.  And although the mortality rate for women in general is declining, that doesn’t actually apply to younger women with breast cancer.  Our stats have basically stayed the same.  Breast Cancer in young women tends to be more aggressive.  And the number of young women diagnosed is increasing.  Prevention is awesome but it’s not a cure.  And for those of us that have been through it, or live with it, we’d like to see a viral Facebook game that truly makes a difference.  Donate time.  Donate money.  One of my friends is putting together something for the month of October that will do those things and I will be posting it on Facebook.

I am asking you to help make THAT go viral.

Or at the very least, when you receive a Facebook Awareness Game, add some of the statistics.  Encourage women to know their bodies so if there is a change, they know to go get it checked.   Here are some links to get you going:

U.S. Breast Cancer Statistics

Breast Cancer in Young Women  Lastly, please know that if you did forward a game to me, I do know it was because you care. And I appreciate it! I just think we can make it better!

Edited to add:

The 31 day project is up and running!  Check it out!

The last one (hopefully)

So I went in Wednesday for what is hopefully the last reconstruction surgery.  Last year, if you’ve been following, I had a second lat flap to replace the infected expander on the right side.  This surgery was a revision of that lat flap and putting the finishing touches on the foobs.  Plastic surgeon said the surgery went well (I can’t tell, it looks pretty horrific to me.  But then they always do in the beginning.)  Mostly I’m itchy and thanks to the heat and instructions not to shower, stinky.  Bleah.  I’m trying to decide if I can get my arm up high enough to wash my hair in the sink.   I’ve got a pretty big incision on the right side under my armpit that makes me nervous about stretching.

So anyway, me and my friend Vicodin are hanging out and catching up on Covert Affairs on Hulu.