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.