The Incomplete Healing Process of Stage IV Cancer

I saw a screening of a beautiful documentary the other day about a young man who, during a remote hike, came across a bear carcass in a barrel. Curious by nature, he poked the bear with his pocket knife only to find the barrel was sitting on a live wire. The man was electrocuted and ultimately lost a hand, parts of his chest and his skull. During a long and arduous recovery, the doctors found evidence of testicular cancer, so he had to undergo chemo on top of having to learn to navigate his life with a new and very changed body.

After the screening,  I approached the young man because what resonated with me was how much gratitude and how much grief was in his story. He had piles of love and people who stayed by his side nursing him back to physical and emotional health. And obviously he had suffered incredible loss. I asked him about his grief process and how he deals with those types of feelings, if and when they come up.

He started to answer, most of his response focusing on the village of love that has gotten him to where he is now. But then he stopped and looked at me. “The thing is,” he said, “It could be worse. I mean, I don’t have cancer anymore.”

He had no idea that the person standing in front of him does have cancer. Not that it would have altered his response although it might have.

It got me thinking about the traumas of stage iv cancer. They are not single or even double life altering events that you get to heal. Healing is rarely complete, rarely whole. Healing is typically just enough until the next trauma comes along. And by trauma, I mean surgery, new treatment, bad test result. Anything that feels like a chipping away at the you you have come to know.

Of course, the real you, the essence that is uniquely yours, can never get taken away by anyone or anything. Not even cancer. But through the physical and emotional struggles with this thing, I am not always clear enough to express my unique essence. I don’t always feel lucid or well. And most of the time I am fighting to heal just enough so my body can handle the next medical obstacle course coming down the pike.

There are those moments of wholeness though, where, despite the daily pain or discomfort, I feel life force energy guiding me along. I can self express and am energized by self connection and connection to others. I try not to harp on the fact that those moments are so fleeting, because they are. I prefer to take them as tiny blessings I can soak up. Of course, I am not always good at doing that, especially with the knowledge of how this works.

Last week, a pre-operative nurse told me to stay positive when I admitted I was nervous about getting brain surgery. Naturally, I wanted to punch her in the nose. Plus I don’t agree that staying positive is the answer to any of my problems.

Stay here, stay aware in the moment, stay authentic, even if it means being a negative whirlwind. Stay open and listen. Because for me, forcing a version of nervous positivity closes me off to hearing things I might really need to hear. Blanket “I’m fines” don’t allow me to see people reaching out to support me. And without that, I am shutting out an opportunity for gratitude. It is in this space where profound healing and presence is available. Gratitude. Where essences brush up against each other.

I have seen this in my own journey as well as in Charged, the documentary I mentioned in the beginning of this post. Absolutely worth a watch. http://www.chargedfilm.com/story/

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It’s in my head

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It’s been a little over a month since my orthopedic surgery (you can read about that here). I am off crutch, have a little limp and some stiffness but overall am healing quite well. My chiropractor gave me some pelvic and sacral support today and before I left her office, she said it should help with the limping.

But walking around, I noticed I was still hobbling. So I stopped, took a moment and made an effort to walk without the hobble. And, what do you know, my body was able to stabilize pretty well without shifting my weight entirely to one side. It’s definitely not as easy or as comfortable, but doable and probably much better for my overall structure in the long run.

I’ve been walking without a limp for over 40 years and within a month of post-op healing, my body has acclimated to this way of walking even after it was useful. It struck me that it doesn’t take much for patterns to become habits to become part of how we navigate the world. That’s not to say that my limp is a bad thing and truthfully, I still have a ways to go before I am 100% limp free, but I definitely do not need to offload my entire left side anymore. It’s just going to take some effort to get there.

That moment made me wonder what else I might be holding onto because it’s familiar or easy. What else feels like a warm blanket to my brain but is not serving my best interest? Whatever it is, I’m optimistic that with some effort I can move through it.

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.