Sunday, March 20, 2016

Why I say "journey"

Simply, a journey is traveling or transitioning from one place to another. Typically those places are physical places - like a journey across Europe or ... a journey across town when traffic is insane and you're trying to find a faster route and instead it usually ends up taking the same amount of time it would have taken if you would have just stayed in traffic (if not longer) but you find a really cool coffee shop along the way and you make a mental note to come back and check it out later, so the journey wasn't a total loss. (I like to call these kind of detours "adventures" but Mike says "adventure" is just an optimistic characterization of "lost" ... toe-may-toe, toe-mah-toe.) Other times a journey isn't between physical places but instead internal places that may have vaguely defined beginnings and undefined ends, if there's an ending at all. Sometimes it's perpetual ... forever - like spiritual journeys or healing journeys ... or in my case - a cancer journey. A journey is neutral and alone doesn't imply good or bad - it just "is." It takes context to determine if a journey is good or bad.

For me - that context is both good and bad and, most often, both at the same time. There was a long period during my journey when I (when we all) honestly thought it was over - thought it was a short, but very challenging, journey. Looking back now, I see that it was just a portion of the journey when cancer wasn't the focus - where the paths took different directions - perhaps veered away from each other - and living life was the focus of my present. And what living we did - we traveled, we moved, we found new jobs, we had two beautiful baby boys ...

And then I turned a corner and cancer suddenly -- abruptly -- came crashing back into my life journey's path and demanded to become a focus again. Something that I have to acknowledge and deal with every moment. It will never go out of focus because it is now, more than before, a parallel line attached to my life's line ... like the lines that represent my children, my husband, my family - a collection of parallel lines that go with me into the future ... Cancer is just one journey within my greater journey ... hence my journey WITH breast cancer ... not OF breast cancer. Because breast cancer isn't my life ... it's only a part of it.

A part of that cancer journey completed on Friday - radiation to my cricoid, C3 and left iliac. I'm thankful for the treatment and I'm extremely hopeful it generates the results we expect. I have follow-up visits scheduled in April to scan and see how things look. I'm hesitant to "look forward" to them because there's always the "fear beast" that casts large shadows of doubt and the insatiable question of "what if?" What if it didn't work... what if I can't get this darn trach out and it stays forever ... what if my C3 is beyond self-repair and I need fusion surgery ... what if it made it worse ... what if I make myself crazy with trying to hold all the possibilities in my mind and my head just explodes instead.

I'm also scheduled to see my oncologist this week to discuss when I start the next drugs ... the next treatment - the new fancy drug on the market called Ibrance and an aromatase inhibitor. But right now - I'm just thankful to be through one hurdle on this journey and to have had minimal side effects from it. My throat is still sore, and I'm seriously craving something crunchy and I'll most likely eat like a horse as soon as I can and gain back the 10 lbs I lost from my smoothie, soup, mushy food diet - but all in all, I'm just thankful. My radiation nurse said it was a milestone and I should be happy I'm done. I am - I am happy I'm done ... but I'm not happy I had to do it in the first place - so there's some additional good/bad context for you.

My life is a journey and no one knows how the path in front of me will unfold - where it will lead or when or how it will end. And that journey is made one moment at a time. It's a long journey - a long road - and now, more often than I'd like to, I will have to walk the "cancer line" of this journey too frequently ... (And normally, before 1/22/16, right here I would end this post and say 'But it's OK because it means I'm alive - and that's what matters,' but that's not how I feel anymore. Instead, I'll end with: ...) Is it ok? No - it's not. But I don't have a choice. I wouldn't choose "this" ever and I wouldn't wish it on any one no matter terribly they've scorned me. But again - I have no choice. I walk the lines that are laid before me - some lines I chose and some lines that were chosen for me. We all play the hands we're dealt - whether we want to or not. Some do it kicking and screaming the entire time and others do it gracefully, with their heads held high and their hearts full of love for the lines they did choose. My heart is full and I hope, and pray, that I can walk my life's journey - and all that's tethered to it - with as much grace as possible (... and only intermittent kicking and screaming).

Thursday, March 10, 2016

Radiation continued ...

So I've had 10 radiation treatments thus far - 30 total if you count individual locations. 10 to my cricoid, 10 to my C3 and 10 to my left iliac (pelvis). I no longer have the pain or weak feeling in my pelvis, but I don't know if that's from the treatment or just from the reduction in hormones now that I'm almost 3 months postpartum. The pain in my neck is better as well. I don't have the numbness anymore nor nearly as many instances of tingling. Every now that then I still feel an ache but that's when my head is in an extreme angle, like chin to chest. And my airway ... the lesion on my cricoid is stable. We won't know how effective radiation has been until a few weeks after it's completed. When will it be completed? One more week. 5 days exactly. And just 5 more treatments to my cricoid specifically. They start next week. Thus far - the only side effects from treatment are fatigue and a really sore throat. Imagine trying to drink a glass of sand. That's what it feels like. My throat feels so dry that just swallowing in general hurts ... then you add food ... it hurts ... a lot. I've resorted to eating like Kobiashi and taking a drink of water or tea with every bite of food to help wash it down. That and chewing my food until it's paste in my mouth ... or just simply eating soups or purees or smoothies right now. It's no wonder my appetite isn't as big as it usually is. My mom is entertaining buying me baby food ...

I've also got the ovarian suppression on board and so far I'm not noticing any side effects from it. It makes you question whether or not it's working. I'm supposed to be having hot flashes and night sweats and other menopausal symptoms. But the suppression is treatment, as my oncologist's nurse keeps telling me. The rest of treatment will happen once radiation is over.

Treatment, treatment, treatment. We stay the course with one agent of treatment until we need to switch. "Until" isn't defined and could be a long time or short time. In the meantime, we're just trying to take time one day at a time. It's been days that are happy and days that are sad, and days where I'm tired and days that I cry. Most often, it's a combination of all of this in one day. I was telling Mike the other day that having cancer - being in treatment for cancer - is a full time job it seems like. We're at the hospital a lot and I know it will slow down once radiation is over, but it just feels like a lot lately. I'm meeting with so many different doctors right now I guess it makes sense - oncology, ENT, radiation oncology, neuro oncology, nutrition ... not to mention the other teams we haven't met with yet.

So what's outstanding right now - we need to see how I respond to the radiation treatment and the expectation is that the lesions on my cricoid and C3 shrink back and scar over and are no longer active for an indefinite amount of time. We should start finding out how successful rads was over the next month or so. Next, the stability of my C3 once it scars over. I'm extremely hopeful that it scars over well and holds strong and that I won't need any surgery on that vertebrae. I don't know when we'll be able to assess that - maybe in a few months, maybe longer. Finally, how I'm responding systemically ... again something that we won't be able to assess for a few months.

I'm so extremely hopeful for a great response. I'm sure everyone is. I pray for it every day.

My birthday is this sunday. I'll be 35.