Spring 2018

I'm starting to believe that I'm dying.

Sooner rather than later.

When the doctor first told me that the cancer was present in my neck ... and then at subsequent appointments we covered the other areas of disease spread - bones, lymph nodes in my chest, my lung, my liver ... my brain. My oncologist then told me that we should expect that in 3-5 years this disease will claim me. That was in January 2016 ... 2 years ago.

Disbelief and denial got me through for a while. It still gets me through most days. Year one, 2016 - I underwent a lot of treatments. Radiation to body and brain, systemic hormone therapy, outpatient surgery to put me into menopause. Those treatments stabilized my brain and my bones. I haven't (thankfully) had any new cancer activity in my bones or my brain since mid-2016.

However my liver and lung have been difficult. The scans in November 2016 showed something starting to brew in my liver and in early 2017 the scans confirmed new growth in both locations. In 2017, I went through 2 treatment combos and started a 3rd one in late December. It's the combo I'm on currently. 3 treatments out of a very finite list of options ... in one year. It's like betting half your chip stack on one hand, without the ability to win more, and losing.

And now this combo has potentially been evaded by the mutant cells.

I had scans on 3/8/18 and it showed that while the lesions we were targeting from previous scans are now stable, and slightly deceased in size and activity, there are now "at least three" new lesions in my liver averaging about 1-2 cm each in size. There's also a suspect spot in my lung that needs "close monitoring." This is what we call a mixed bag.

To complicate matters further - if you remember - there are 2 distinct colonies of breast cancer cells romping around. The hormone-positive colony and the Her2+ colony. Each of these pathologies separately have their own outlined treatment options. Hormone-positive is treated with anti-hormone therapy and chemo. Her2+ is treated with anti-Her2 therapy and chemo. So in this respect, I have both treatment arms available to me, where most people only have one or the other. This is good. In another respect, having two distinct colonies excludes me from a lot of clinical trials as most clinical trials are aimed at one pathology, not two different ones. This is bad. From a third perspective, this also means that in order for me to know what is even growing, I need a biopsy each time. And of course they only biopsy one of the new lesions, so we run the risk that the other 2 of the "at least 3" new spots are not the same. This is ... annoying.

But I feel it now. I feel my mortality more so than ever before. "At least 3 new" 1-2 cm lesions plus the 5 cm lesion that's currently stable (but could change at any time) all hanging out in my liver ... like it's spring in there too.

It's hard. It's a hard place to be. I don't think any one other than Mike really understands the severity of this on the same level that I do. He's perhaps the person who is impacted the most, after me of course. And then my boys, and then my mom and sister, my mother-in-law, and then my extended family and friends and colleagues.

I think the majority of people in my life understand on some level - that what I'm dealing with is serious. But being so far removed from the day-in, day-out grind of emotional turmoil, intense treatments, and obscene quantity of doctor appointments ... it's easy to put aside. For now.

For now, I look, act and feel mostly healthy. For now. But I'm one bad scan away from chemo for the rest of my existence. I'm always one bad scan away ...

And that is so

hard

to

accept.

Chemo

forever.

Don't get me wrong - I still have hope for a miracle. I do. I have so much hope for seeing my sweet boys graduate high school. But now - imminent death is that much more tangible than it ever was before. And that makes me incredibly sad.

I'm so sad for all the things that I will never get to do ... never get to see ... never get to experience. 90% of that revolves around my boys and Mike. All my dreams for what we would be as a family ... how we would raise them, what we would see them do, see them become ... how we would grow old and crotchety together ...

SO MUCH LIFE ... un-lived.

There's so much I want to do still. And I honestly don't know if I'll ever accomplish it all. A solid year maybe left ... maybe two. Three if I'm really lucky. And I mean REALLY lucky. The boys would be 8 and 5 ... I very well might miss seeing Nicholas start kindergarten.

I want to spend a few days with my nephews and niece in VA ... just me ... so I can focus on them wholly ... maybe we'll bake and dance and laugh and they'll have a solid experience of me to reflect on after I'm gone. I want to spend a few days with my cousin in Wisconsin ... know her kids ... take pictures together ... and maybe, just maybe ... her oldest of her 3 kids will have a faint memory of me when he sees the picture when he's older. I want to spend some time in Oceanside, visiting all my family and friends ... having a big family party like we used to when I was little. Take some more pictures and laugh and maybe eat too much. See my boys play with their cousins and burn the memory into my mind because unfortunately, they're still too young to really remember the visit when they're older. Tour around my hometown with Mike ... reminisce ... give the city, the beach my love for it ... and then let it go. It would all be like a goodbye tour. I want to have one more beachy vacation with Mike ... seven days of nothing but sun and food and ocean and each other. And then one family vacation with the four of us ... since we haven't done that yet with Nicholas.

I've started a journal for Mike and my boys. A collection of errant thoughts about me ... things I like, I love, favorite memories ... a measly momento of me ... but what else can you do. What else does someone leave behind. It's a vain attempt for me to tell my boys about me because they won't be able to grow to know me ... because I'll be gone and they'll be young.

It's like nesting when you're pregnant ... this urgency to get things ready. That's what I'm feeling. I have this urgency to do as much as I can to prepare for my death. To collect thoughts and memories and tokens of my life and assemble it all into an offering for my husband and children and family ... and none of it feels adequate. None of it feels like it's enough ... it doesn't convey enough. The words "I love you" written a thousand times does not convey the feeling of just how much I love them. And I won't ever be able to make them feel it because it would take a full lifetime of experiences ... a lifetime of picking them up when they fall down, of laughing with them, and crying with them, and celebrating birthdays and holidays ... and watching them play sports, teaching them to ride horses, and bake and dressing for prom and yearbook photos and driving for the first time and their first jobs and all the times they're sad and need a hug and all the times they're happy and want to give a hug ... Seeing them get married and meeting their children ... I'll never get to meet my grandchildren and see my own boys become fathers.

I'm starting to really believe that I'm not going to be around for any of that. We just registered Camden for kindergarten. It starts in August. While I'm hopeful I'll be here to see him finish his first school year, and maybe the start of this second school year ... I'm scared that I may not see him finish first grade.

And the thought of that - the very real threat of that - breaks my soul in ways I cannot even begin to express.