November 9, 2017

A year later

My first annual "fuck cancer" celebration!

That date will forever be seared into my mind as the day that I was told that I have cancer. Not just any cancer, but a rare and highly aggressive one at that. A year later, all I can really say is that a lot has happened, much of which I don’t think I’ve fully processed yet. I’ve thought about how I want to address this anniversary on the blog several times but nothing I think of seems complete or enough. There is likely not enough room (or attention span on either of our sides) for me to try to begin to cover what this year has been and/or what it will likely mean to me in the future.

You’d think that going through something like treatment for Stage III cancer would be some sort of life affirming challenge or one that gives a clearer sense of purpose. Frankly speaking, I don’t feel that way. I feel equally as directionless as I did previously in that I don’t suddenly have a greater clarity on the purpose of life or the purpose of MY life.

The one thing I can say with absolute certainty though is that this has been a year that I’ve spent enveloped in love. I will sound like a broken record when I say that the outpouring of support I’ve received is far beyond anything I could have imagined. The calls, cards, texts, visits from around the world, presents…the list is endless. From the bottom of my heart, I thank each and every one of you who has taken the time to think of me and be with me on this journey. Thank you isn’t quite sufficient enough, but I don’t seem to have the words to express how I feel. It also truly humbles me to know that I’m fortunate to have each of you in my life.

Now, there’s probably the question on the table of what exactly is happening with me now and how I’m feeling. From a treatment perspective, I have completed the “active” part of treatment (chemo, surgery and radiation). I will be on daily endocrine (hormone) therapy for at least five years, potentially even ten years.

As for how I’m feeling, this is a tricky question to answer. Physically speaking, the best answer that I can provide is that each day is generally better than the last. But I am by no means recovered from treatment. My energy levels are still not where they used to be and it will take many months, maybe even a year (if ever) to get back to that.

After radiation wrapped up on 8/28, my mastectomy incision line opened up which required wound care and regular visits to the doctor, and which delayed physical therapy by nearly two months. In fact, I’ve lost a significant amount of the range of motion I had gained back after my mastectomy. The process of healing the wound has required patience and diligence. In fact, despite the level of attention and care I’ve dedicated to it, the wound just opened up again this week after seemingly being healed. Tamoxifen (the hormone therapy I’m on) also comes with a whole host of side effects, which for me have included a significant increase in hot flashes, near nightly leg cramps, insomnia, achy joints, fatigue, irritability, weight gain, and more.

Honestly, I fight each day for EVERY millimeter of normalcy that I can bring back to my life. For the most part, it feels like I’m slowly but surely gaining ground. But every once in a while, something will happen that will bring into sharp relief just how much ground I’ve lost and how much more I have to go. Hell, it can sometimes make me feel like I’m NOT making any headway. Thankfully (and rather ironically I think), this blog serves as a testament to just how much progress I’ve made. I can look back to how I was feeling in February versus now, and there is literally no comparison.

While there may be many down days to come, the general trend is up and that is all I can ask for. Perhaps the issue at hand is that I’m trying to fight to get back to how I was pre-cancer, and that can never happen. I am fundamentally a different person than I was a year ago, both for the better and for the worst. While I know that I will be living a new “normal”, I have no idea what that looks like so all I can do is try to fight to get back to the way I was, and likely strike a balance somewhere in between.

So then the obvious next question is, what comes next? Unfortunately, I don’t have the answer to that yet either. For now, I’m focused on my sister’s wedding which is coming up on 12/1/2018 (yes, you read that correctly, 12/1 of THIS year). Helping to plan the wedding and surrounding events has actually been what’s kept me so preoccupied these last months (well, aside from treatment obviously).

There are still so many questions on the table. Do I say that I have cancer or do I say that I had cancer? I’m technically NED (no evidence of disease), but there is a deliberate reason why doctors use that term. The cancer could very well be there in my body, either actively or dormant, and they just can’t find it. How much information about my diagnosis do I share in the future with work, new acquaintances and beyond? Will I ever get used to worrying about every single itch, twitch or red spot on my body? Will I be able to be patient with myself as I adjust? Will I ever regain the energy that I used to have? Will the lymphedema I seem to have developed eventually reverse or will it be permanent? Should I think about getting reconstruction or will I be comfortable with a foob for the rest of my life? Will these goddamn hot flashes ever cease?

And above all else, will the cancer return?

As with all things in life, there are no answers or guarantees. I will have to learn to live with the question of whether the cancer will return or not every day. And to some extent, I have to ask the question – does it matter if I know if it will return or not? Will that knowledge somehow dictate the way I live my life?

There is no “perfect” life. I do not, even now, feel the need to live some idealized version of life. I don’t even know what that would look like. I would rather approach it as if I’m going to live to be a wizened old woman. And I say that knowing that my chance of making it past five years is 40% or less. But I hope to NEVER have to use this blog again as a means of communicating my health updates.

While I’m not sure what I will do with the blog going forward, for now I will consider this as my “signing off” post, at least for anything related to my health. I do so with the hope that I get the opportunity to speak to each of you face to face, doing the thing I enjoy most in this world – spending time with each of you.

Wherever I may be in the world, and whomever I may be with, November 9th will forevermore be considered my “FUCK CANCER” day. Whether you’re with me or not, if you recall this date, I ask that you raise a toast to simply celebrate being alive!