Getting sick to get better

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I’m on an awesome cocktail of medications to shut down hormone production. At least that’s the nutshell version. I’m also on a brand new drug that stops cancer cells from multiplying. So far it’s shown a lot of promise in my scans. And it’s great when I can take it. Problem is it depletes my white blood count and makes me feel pretty awful. So there are times I have to come off the drug that may be the most effective part of my treatment.

This is the thing with cancer treatment that sucks. You feel fine (except my experience with stage IV is a little different because of the bone mets. Bone mets hurt) and then along comes treatment to make you sick to get better. I wish I could drop some wisdom as far as this is concerned but it’s more an observation than anything else.

What’s confusing is identifying what is cancer discomfort versus side effect pain. Like I said, bone mets can hurt. I had a lesion in my hip that made it impossible to walk until I had radiation. The course of radiation was long (10 days) and the field was large (most of my pelvis and part of my spine). Needless to say, my gut got affected so I had bowel symptoms along with the standard radiation side effects, like fatigue.

Why I’m bringing this up is because I am choosing to suffer through all of this with the hope that I get better. And to me, that means two things. One, I’d like to feel better. Have a day where I feel normal again. Go to the gym. Take a run without pain. And two, maybe if I can wait it out for a few years, a cure will show up and I can really get rid of this thing.

So here’s to getting sick to get better. Or just to plain getting better.

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I like boobs. I like my own boobs.

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It’s strange to lose your breasts, to lose a part of you that makes you a woman. For some people it’s a sensual area. For me it never was,. In fact, I never really liked my breasts that much. They identified me as female, they were objectively sexual but I never found them beautiful. They were small, oddly shaped – at least that’s how I saw them.

Now I actually like my breasts. I think I own them differently. I find them beautiful, sexual. There is not a lot of sensation in them but, regardless, I like the way they feel to the touch. For me, being a woman and feeling sexual – which was an important thing for me to find after a Breast Cancer diagnosis – came with body ownership, feeling integrated in my own skin. I owe much of this sense of ownership to the choices I made pre-surgery and to some of the sexual exploration I wound up doing after surgery (all of which I will write about in time).

I’m sure there were somatic issues, emotions I held in my original breasts, which were somehow walled off from the rest of my body. I’m also sure that some would say that was the root of my cancer. I will never know. But what I do know is that, while this is not a diagnosis I would wish on anyone, the silver lining for me is having a healed relationship with my breasts and a part of my womanhood I had unknowingly denied for so long.

Breast choices

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In 2011, when I was first diagnosed with breast cancer, I was confronted with choices about what to do in terms of surgery. My tumor was fairly large and even with neoadjuvant chemotherapy (which means chemotherapy to shrink the tumor prior to surgery), it was recommended that I have a mastectomy.

The time and energy I put into the following decisions were pivotal in my body ownership journey. Being my own medical advocate was critical. Making choices based on health and aesthetics got me out of feeling victimized and hopeless. When I look at my breasts, I feel proud. Through something that made me feel so powerless, it was nice to find a way to be present and proactive. It was easy to hear that inner voice that said “I DON’T WANT Cancer” and how fantastic it was to be able to hear “I WANT…” and then do something creative with that desire.

My choices aren’t right for everyone but I am putting them here in case they can be of help to anyone. Because an extra voice may have helped me as I was trying to figure out what to do.

  • Bilateral vs. Single Mastectomy: The cancer was only in one breast and I had to decide whether or not to have both breasts removed or just one. I opted for both with silicon reconstruction.
    • Symmetry: This was important to me. I was grateful to have life saving surgery and I wanted to go after what, for me, would be the most aesthetically pleasing choice.
    • Less Stress: With Cancer there is already a fair amount of poking and prodding that happens on a regular basis. There are frequent scans and the stress that is associated with waiting for the results. I did not want to have to go in for a yearly mammogram and add that to my list of worries. Never mind that the data shows that survival rates don’t necessarily improve when you remove a healthy breast. Tell that to my emotional center!
    • Question of Breastfeeding: Knowing I wouldn’t be able to breastfeed (if and when I did have a baby) wound up being less important than symmetry and less stress. But this was definitely on the list of things I was considering.
  • To Nipple or not to Nipple?: Through research, I learned about nipple sparing mastectomies. It was something I requested and, because of the placement of my tumor, I was able to keep both nipples. The one on the cancer side looks a little different but I am still happy with the result. (As a side note, my keeping my nipples did not have anything to do with my recurrence. Sadly I had lymph node involvement as well, so the cancer had already escaped my ducts.) The process post-surgery was trying because, while they were able to spare the actual nipple, there was no guarantee my body would resume blood flow to that area. So even after surgery, I was at risk of losing them. I’m happy to say that I got to keep them both.

Welcome to my new body part…

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Back in 2011, I said goodbye to my breasts. They were replaced with silicon versions of the same thing. But the swap still felt like a loss. I mourned that loss for a while. And only recently did I feel emotionally integrated. My breasts were mine again. Different, altered, man made, but mine. I now look in the mirror and see completion where once I saw lack.

It occurred to me that I have recently adopted another new body part. A titanium rod in my left leg. Because the cancer was thinning out the bone, the surgeon went in, scraped out cancer cells and stabilized my femur with a screw (to avoid a future fracture). And while I am thrilled to be bionic, the pain of recovery has caused me to experience similar feelings of despair.

So instead of focusing on the pain or thoughts of not being enough (and because forcing gratitude doesn’t always do the trick) I am welcoming my new body part. Accepting this new part of me. Allowing it to support me and operate in concert with the rest of my body. Because now we are one.

Afraid to be sick / afraid to not be sick

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I don’t like being sick. Not a fan of hospitals. While grateful for the love of support of people around me, I don’t like the kind of attention that comes with illness. I especially don’t like being physically compromised or limited. From not being able to go skydiving to having pain when I get out of bed or walk to the bathroom is not the way I consciously choose to navigate this existence…

What I do like though is the permission to not make commitments. To not have to spend time with people that don’t nourish or inspire me. I like that I have found the mindset to follow only the things in life that interest me. Of course, none of this is really connected to being terminal. Everyone has these rights. We all have the permission to follow our dreams, whatever they may be, and not waste the majority of our time waiting for the sand to run through the hourglass. I have always believed this but I act on it now. If I got better, would I continue to live my life for me?

Driving myself into gratitude

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One of the most important things during all of this (and probably life in general) is finding gratitude. It’s been the only way I can reframe and shift the focus from feeling lousy and helpless. That is, when I am willing to not feel lousy. Because, truthfully, there are times when I can wallow in lousy. When that is all I want.

But this week I was willing to feel better. And the moments I felt unwilling, I became willing to be willing. A long thread, but it makes sense if you think about it…So, that said, here is something to hang on the gratitude hook:

I drove. What a freedom to be able to drive again! It’s been a few weeks since my surgery and I can now man (or woman) my own car. And while I am eternally grateful to the people who have so far shuttled me to and from appointments, it was so nice to feel that sense of control on the road…and perhaps metaphoric regaining of control over the things in life I can control.

I don’t want to write about Cancer

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I don’t want to write about Cancer. I’m afraid to over identify with it.

This is why it’s been 6 months since my last entry. Within the last 6 months, a lot has happened health wise. Mostly I have cancer in my bones, a spot in my liver, but the bulk of it is in the bone…I just had orthopedic surgery to prophylactically stabilize my hip, which was in danger of fracturing. Insert gratitude here…

Overall I feel angry. That is really hard to admit. It’s not the best of me. It’s not the hopeful cancer fighting woman people root for. You read obituaries about people who have succumbed to this and they “never let cancer get them.” There is always a line in there about how bright and hopeful they were. I imagine they had moments like the ones I’m experiencing too…the moments where you think about giving up. The moments where you question God or the Universe and wonder if there really is a plan. The moments where you struggle to find meaning amidst the physical pain and profound sadness.

The reason I am writing today, despite my lack of desire to do so, is that I am hoping this helps me process the anger so that I can enjoy whatever time I have left. The truth is I could have many years, even decades. But my feeling is that without some levity and without gratitude, my time will be foreshortened. And while I find myself wanting to give up, that’s not really what I want. So I’ll write about Cancer today because maybe it will make room for some hope for tomorrow.