Saturday, April 23, 2016

Slow and steady

A lot has happened, despite the happenings being baby steps. Our first piece of good news is that my C3 is stable! Hooray! The MRI showed "healing" and no encroachment in the epidural space (read as:  the threat to my spinal cord is under control). The vertebrae is no longer fractured and my c-spine is stable when flexed (I did a flex test via x-rays to make sure). The neuro surgeon, who was very adamant about me wearing the neck brace AT ALL TIMES (even sleeping), looked me in the eye and said "I just don't see what we saw in your last MRI. Call me if you start having pain." And that was that. So with confidence, I can continue not wearing the neck brace and breathe a little easier.

And I am breathing a little easier. This week we also had another ENT scope appointment of my airway. It's always nice to hear happy surprise in your doctor's voice, especially when you have cancer. They didn't expect to see much change in my airway but they did. Shortly after my last post I was given a steroid dose pack to calm the inflammation in my airway, which is what the rad onc was suspecting was causing me to not have my voice. The steroid dose pack was a 6 day taper, starting with a highest dose and working down to the lowest dose. On day one, after the very first dose, my voice started to return. I was SO happy. It was really hard to not use my voice too much as it was coming back. Honestly, I didn't even try not to use it. I was just so happy to have it back I was talking as much as possible. Thus, this latest ENT appointment was post the steroid pack, and I am honestly breathing easier. I have had my trach capped (closed) for weeks now. All breathing is happening through my nose and mouth now. I *almost* feel normal ... *almost* forgetful of my trach. So it begs the question, when can it come out? Not for a couple months still. They want to see stability for a few months so they can be confident about taking it out. Evidently it's a bit harder to put a trach back in once you've had one. OK FINE. I'll wait, because I certainly don't want it put back in. I have an MRI for my cricoid on May 12th to check it out and see what further progress we get with a little bit more time.

And speaking of healing ... I'm waiting to start cycle 2 of Ibrance. During my 7 days off the drug I had a blood draw to test my white and red blood cell count, and a host of other things ... currently, at the end of my off week - which is designed into the regiment to allow your body to bounce back from the effects of the drug - my absolute neutrophil count is at .64. Under 1.0 and you're at serious risk for infection and the docs worry about your body's ability to fight off an infection. So ... all of this means that my body is responding to the drug ... yay! It also means that we need to wait another 7 days and test again before I can start cycle 2 of the drug. If my counts this Thursday are equal or greater than 1.0, I can start cycle 2. My doc is also going to lower my dose of the drug to 100 instead of 125. It's a window she she says ... a window of efficacy where the drug does its thing but not so much as to seriously hurt my body (my bones specifically since white blood cells, etc. are created in your bone marrow). Balance ... finding balance is what we need.

She also said the MRI of my C3 is a good report. The fact that it's showing healing is encouraging because she says that they don't see healing in one area and "bad" things happening in other areas ... which is good. It makes me hopeful that the other areas that didn't get radiation are healing as well from the systemic meds. In late May, I'll have another full-body PET CT of everything to see if this is the case. Fingers crossed for that one for sure.

I keep reading stories about women who are living - and living well! - 10, 15, 20+ years since being diagnosed with metastatic breast cancer. It's encouraging and inspiring, as well as a lifeline. With some of the breakthroughs that are in the news lately - the understanding about how cancer cells metastasize, how they interact with the immune system, the advances in immunotherapy, the Cancer Moonshot initiative - all of these breakthroughs continue to build up hope that new, more effective treatments are coming, and coming soon.

Saturday, April 2, 2016

And now we wait

So the thing about cancer that sucks is there's a lot of "wait and see" that happens. I had an ENT appointment yesterday to scope my throat and see if there was any change yet on the lesion on my cricoid. From what they could see - nothing yet. But what they did find was that there's some kind of granuloma by my vocal chords which is preventing them from coming together all the way, which explains why I can't speak above a squeaky whisper. I'm hopeful it's just swelling and inflamed tissue and nothing more than that. Granulomas by the vocal chords can be caused by coughing, overuse of voice, trauma to the area, etc. etc. etc ... Since I've had the trach in, I've done nothing but cough and hack and vomit and endured trauma to the surrounding area via radiation. So for the second time this year, I can't speak. It's infuriating. And frustrating. And maddening. The likely cause is a viral infection ... which makes sense because Camden is currently battling a bug ... and of course I'm going to catch it because a) he still drools like he has teeth coming in (which he doesn't), b) he commandeers practically everything I eat and drink, c) breathes right in my face, and d) I'm always kissing on him ... so it's pretty much a given. And the virus most likely had an easier time taking hold because I have a trach (a direct pathway into my respiratory system that bypasses all my body's naturally preventative measures), as well as having a lowered immunity from the radiation, not to mention the damage to the surrounding tissue from rads.

The complicated part right now about having a viral infection is that I've started Ibrance - the oral chemo type pill. I've just entered the second week of taking it and one of the listed side effects is an upper respiratory infection. Ibrance lowers your white and red blood cell counts ... which puts you at an increased risk for infection. Thus ... I don't know if I caught Cam's bug before or after I started the medication, since it's only been a week on the drug, but - because I am now on the drug - it may take longer for my body to kick this virus because my counts may be going down. Ibrance is taken for 21 days on, then 7 days off - and during those 7 days, your body gets a break to rebound so your counts can come back up.

What really got to me yesterday was that there was no visible change in the lesion and the trach has to stay in. I was realistic in that I figured the trach wasn't coming out yesterday. That doesn't mean there wasn't some small optimistic, hopeful part of me that thought it might have been possible. It's my nature. So despite the realistic side of me, I was still really disappointed. It reinforced that there's nothing I can do right now other than "wait and see" if the trach can come out ... "wait and see" if the lesion shrinks or dies and scars over ... "wait and see."

The radiation oncologist said it could take 8-12 weeks to see any change and even then benefits can still occur months after. It's been 2 weeks since I finished the boost of rads on the 18th of March. I know, I know ... It was really optimistic of me to think that I'd see anything in the scope after 2 weeks. So maybe it was more than just a "little bit" of me ...

I'm just so tired of the coughing and vomiting and not being able to speak and having to deal with the trach and the humidifier at night and leaning over to kiss my boys or leaning up to kiss Mike and the angle of my neck triggering a coughing fit because the trach touches the inside of my trachea ... I'm tired of the valve popping off when I cough too hard or the pain in my ribs not healing because I pulled an intercostal muscle from the repetitive, intense coughing fits. I know I need to be more patient. I'm usually really, insanely patient.

The way this dance of metastatic disease works is we treat ... we wait ... we see (via scans and symptoms) ... and then we assess how to continue the dance. We do this forever until there is an extremely effective treatment or a cure surfaces. Patience, resolve, determination, endurance, resilience ... prayer, hope, love, family, friends ... and more patience - that is what will carry me through this.

In the meantime, we wait for my scans to show us what's happening ... how effective the radiation was, how effective the meds are, when the trach can come out ... and while we wait, we live. We live with a fun and crazy 3 year old who is showing us how amazingly expansive his imagination is by diving into these 3-5 minute monologues that outline his thoughts ... we live with a fun and cuddly 3.5 month old who is learning to roll over from back to tummy (he's already got rolling from tummy to back!) and learning to sleep through the night. We live as wife and husband and mom and dad and daughter and son and friends. We live for today.