Friday, February 19, 2016

One breath ... one movement.

One breath, one movement. One step at a time. One day at a time. One moment at a time. That's all I can do right now. If I think too far into the future, I get overwhelmed with the fear of the unknown. There's too much to consider all at one time - too much to worry about - too much that I fear ... too much to hope for. It used to be so easy to dream about the future, to dream about vacations, about the new places we could live. I'm a dreamer by nature. And I feel like that part of me has been stunted ... dramatically. Now, any thought I have of vacations or moving or "the future" is anchored by "will my treatment allow it?" or "will I be able to do 'X' and not get sick?" ... or ...

Learning to live in the moment - the true present - is hard. Really hard. But it's all I can do to keep my sanity. I think about my mom leaving and it triggers a spike in anxiety. I'm never anxious and the thought of my mom not being here scares me to pieces. I worry about how we're supposed to manage everything on our own - when just a few weeks ago I was so incredibly excited to find our rhythm as a new family of four (five, when you count our puppy Haley). We were just starting to find our stride. Everything is easier when mom is here.

I've altered my diet. Sugar scares me and "white" carbs scare me as well. I'm trying desperately not to develop an unhealthy relationship with food because of this. There are so many articles about how one thing is great for me and another article about the same thing is bad for me - that it fuels my cancer. It makes me scared of everything. I love sugar. I love coffee. I love potatoes and pasta and bread ... oh bread. But I ate them in moderation. Sometimes I'd binge here and there on sweets but I tried to limit those occasions. I've decided that the best diet for me right now is to up my veggie intake as much as possible, rely on fruits for my sweets and that hormone free, cage free, no antibiotic eggs and chicken are OK. Fish and seafood are OK. Some grains are OK so long as they're whole grains and in limited amounts. I don't know if this is a good "cancer diet" or not ... but for now, it's what I got. It's what I can do.

I'm relatively sure I'm going to do the hormone suppression (a shot in the stomach once a month to shut down my ovaries and a pill to block estrogen from my adrenal gland and fat tissue) as well as a newly released drug (Ibrance) that is supposed to have really great results. It's been on the market for a little over a year, so long term effects are unknown. Oh and a bone strengthening agent ... another shot. 2 shots, 2 pills ... every month until ... who knows. The Ibrance drug is taken in a cycle of 3 weeks on, 1 week off. It's considered targeted therapy. It knocks your white blood cell count down, and potentially your red blood cell count too. It's just a matter of "how far down" that's the concern. Having to be on something that has this as one of its side effects will heighten my risk for colds and flus and any other icky bug. I have a toddler who touches everything and sneezes and coughs directly in my face. Oh yeah ... and I also have a trach - a direct opening to my lungs ... so that's an issue all its own as well. Please don't look at me weird if you see me in face masks and latex gloves all the time.

I say "relatively sure" that this is the route I'm going to go because I don't think I will ever be 100% sure any choice is the "right" choice.

"When" all this starts is up in the air at the moment. I'm currently working to transfer my care to an oncologist who specializes in treating young women. I'm assuming once that happens, she'll start me on the hormone therapy. The Ibrance will have to wait until after I finish radiation. Radiation starts on 2/25 and goes for 3-4 weeks, 5 days a week. Again, Ibrance is too new so they don't know how it will react to radiation, so they don't combine the two just yet.

I'm worried the hormone therapy will change who I am. Mike says he'll be on his best behavior as I adjust to the decline. I don't want him to have to be. I want him to be free to be him ... but I understand what he means. I'm scared I'm going to turn into someone different than who I am today. My former oncologist in Colorado said I've always been a ray of sunshine. What if I lose that feature of myself? What if I'm mean to Cam? What if I can't handle Nicholas' cries? What if I become someone my husband can't stand but tolerates because he knows the true me is in there somewhere, even if she doesn't come out as much as she used to? What if I'm not good at my job any more because I'm snippy with people or forgetful or something else? What if, what if, what if.

We've had a non-stop stream of family and friends visiting and staying with us since the news broke. It's been amazing. It's been a very much welcome distraction as well as so helpful and so good to see everyone. Tomorrow my sister heads back to VA and Mike's best friend, Nicholas' namesake, heads back to his life as well. For a while it will just be the six of us, since my mom is still here indefinitely (and selfishly I say, thankfully). It's so much easier to stay in the now when so much is going on. It's when it's quiet ... when things slow down that I catch myself ... thinking. Thankfully they're both planning trips back again this year ... I look forward to that.

It's been so nice this week not having appointment after appointment. Celebrating Cam's 3rd birthday on Monday was amazing. For a day I could almost forget this is even happening. I say almost because the trach and the neck brace are a constant reminder. I only had a radiation simulation appointment and couple more scans on Tuesday. During the simulation, they aligned me on the table, marked me with sharpie, and stretched a plastic form over my face to make a mold that prevents me from moving during radiation that literally hardened in place as it took shape. It was snapped down to the table. "For Nicholas, for Cam" was all I kept saying in my head as I waited for them to finish. I have to wear that form during each radiation session. A sharp contrast to Monday.

When I was practicing yoga a lot, the vinyasa strengthened me - one movement, one breath ... it got me through the flow when I was too tired, or my muscles were too sore or my motivation just wasn't there. Knowing that it was just one movement, one breath at a time was all that I needed to do to make it through ... to pace myself. I've just got to pace myself. What's truly important has been crystalized and very easy to define now. I've just got to pace myself with what's important ... and keep breathing.



My amazing family, Camden turns 3

1 comment:

  1. You are incredible and you will beat this....I don't doubt for one minute that You, Mike, and the kids will grow old together with the memory of this being a distant past 😊

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