Still struggling with cancer

Cancer – and the aftermath of cancer – doesn’t go away. I may look better and feel better than I did last year, but cancer is with me every single day and my body is still struggling. I’ve never operated at less than 120% physically, and now I’m at a permanent 70-80%. It’s depressing. I have to think about every movement my left arm makes: can’t have it below my heart too long, can’t have anything restrict it, can’t have it above my head, must be aware of restrictions even though I can’t feel most of it since it’s numb, can’t sleep on the left side, must remember to wear compression sleeve, can’t lift heavy objects (what is considered a heavy object?) The list goes on and on. Who doesn’t take their body, their limbs for granted? Why would we ever worry about not lifting, not walking?

People have compared my cancer to breaking a bone, appendicitis, getting the flu, or getting stitches. They’re somehow trying to relate to what’s happening for me. But you typically recover from those things and you usually never need to think about them again. Twenty percent of my body is disabled. Forever. I don’t wake up and ever feel 100%. This wasn’t a skin tag removal so please don’t compare cancer to everyday maladies.

The damage is physical and, I hate admitting this, but it is psychological as well. There is definitely some PTSD  going on here. Giant waves of paranoia, fear, and helplessness crash over me multiple times a day and drag me into a black hole. And I’m hard on myself about it. I tell myself to get over it, that I’m being pathetic, that it’s not so bad, that I’m just feeling sorry for myself, or this very ugly one: that somehow I deserved this. I am horribly mean to Leah.

Coming to terms with cancer is going to be a lifelong journey and it’s a crappy, crappy road. I keep searching for a silver lining that doesn’t exist. I suck at ‘living every day to its fullest.’ I am not a grass-is-greener-bright-side kind of girl; that will never be who I am. I am a Reality Girl driven by half facts and half dreams.

The amount of cancer related appointments I continue to go to is never ending. In the last two months I’ve had visits to my oncologist, radiology oncologist, gynecology oncologist (more on that in another post), physical therapist, general surgeon, and breast surgeon. There are reminders on the calendar screaming at me that cancer is in the room, every day, every week.

None of my doctors has declared me “cancer free.” They say, “We certainly hope you’re cancer free, but with HER2 receptors and lymph node involvement we can’t say for certain.” With each new ache or pain I stop and ask myself, am I ok? Is the cancer back? Has it metastasized? When should I worry about a new symptom? My radiation oncologist says I should worry if something increasingly worsens or is persistent. His words become my mantra when I have a pain, ache, or visual changes.

Writing feels like therapy for me. If I spew it out without holding back, with no filter, no end or beginning, no thought of where I’m going, maybe it will be easier to walk into the black hole of the future and away from the black hole of the past.

My relationship with cancer

Lucky doesn’t begin to describe how I feel about my relationship with Amelia. We’ve been together for 20 years. We met at a yoga center where I was working, and Amelia – who was a vegetarian, non-drinking straight woman – was “finding herself.” I’ve always said that one day she was touching her toes, and then she found me, meat, and bourbon. -Insert my laughter here-

We’ve survived something most couples don’t: Owning restaurant business together. Having a business together catapulted our relationship to a whole new level. It took a while to navigate, but we’re awesome at it. We are a machine. (Here’s a tip for any of you who wonder if you could do the same: You both need to excel at different things and you need to accept those strengths and not be a pissy-pant because you think the other person has it easy. Trust me, no one has it easy. And you can’t be a control freak.)

So now here Amelia and I are dealing with cancer. Cancer is the most self-centered thing that has ever happened to me. It’s all about me and my cancer most of the time. But in reality, it’s not just about me. It’s also about Amelia, my caregiver, my Love. Sharing your relationship with cancer sucks. It is a physical and emotional strain day in and day out. It doesn’t go away. We don’t forget about it. It’s not like just having a bad day. This is forever.

I won’t go too much into the details of HER2 positive breast cancer, but there is a chance the cancer will show up again in my lifetime either at the same site (local recurrence) or a metastasis (a distant recurrence). The longer it takes to come back, the better because maybe there will be a better treatment developed in the coming years.

Then again, the cancer may never come back. It could be completely gone and we may never have to go through this again. That what I believe 80% of the time, but when I’m in the 20% place I’m obsessive and gloomy. It’s not a good place. I think over time that 80% optimism will increase until, as one good friend of mine put it, one day I will go through a whole day without thinking about cancer, my mastectomy, or chemo.

I know this: if the cancer does recur, Amelia and I will deal with it, and it will be hard. But our love transcends time, difficulty, grief, and everything in between. Love is my motivation.

 

 

Oncologist

The next appointment we have is with an oncologist. Dammit, I now have an oncologist.

The pathology reports came in electronically. (We love technology. That we can view all of my records and test results online is amazing.) Trying to decipher a pathology report without a medical professional is pretty hard. There’s only one thing that we really came away with. During surgery, the pathologist in the operating room found a 2mm area of cancer cells in a lymph node. This was classified as a micro-invasion which is a very grey area as far as treatment goes. All of the tissue was sent to the pathology lab for more thorough testing. The new pathology report says two lymph nodes testing positive for cancer, the largest tumor being 6 mm, which is a macro-invasion. This means I have Stage 2a cancer. Well, shit, this is not a grey area anymore.

Hormone receptor tests came back, too. I am negative for estrogen and progesterone, but I am positive for HER2 (human epidermal growth factor receptor 2). This, to me, is good news because HER2+ has very successful treatment with Herceptin, a drug that targets the HER2 receptors.

I am doing a lot of what if-ing right now, trying to prepare for the next steps emotionally. My sense all along has been that I’ll need chemo but I keep hoping for some little light to point in a different direction. It’s a waiting game, still. And I’m full of questions, some of which I don’t want to even ask out loud.

There is more good news. Genetic tests came back all negative. I don’t have any of the scary cancer genes.

Last month I was stressing out about re-wiring lights and tiling a floor. This month I’m relieved that I don’t have scary cancer genes, and I’m beginning a long journey of healing after a mastectomy. Perspective.

Fight or flight

September 16, 2015

Fight or Flight?

I’m in the Fight camp. I am not a runner. If I run, I run toward the car that’s on fire (true story), toward the two large men about to punch each other (true multiple stories).

When we found out the surgery date I had an overwhelming urge to run away as fast and far as I could. Overwhelming urge doesn’t even really begin to describe the intenseness of flight that I had. Then comes the paralysis, because I have zero control. Then comes tears of loss and grief. Then Amelia and I hug for a long time. Then I go to work.

Cancer never comes at a good time, but goddamn, this is the worst time. Five days before my diagnosis we closed a business that we were done with physically and emotionally. It was a cathartic and extremely emotional time saying goodbye to Felicia. We closed at our peak and it felt great. It was a huge relief to let it go and prepare for our next big adventure. We are unemployed. And, if the irony wasn’t enough…

In August my Mother was diagnosed with breast cancer. It was caught extremely early by a radiologist who works like a detective. These are the health care people you want on your team. They operate like investigators, they want answers to the whats, whys and hows. My Mom’s cancer was tiny, BB-sized, and the radiologist found it. She got a lumpectomy relatively quickly. Every cancer is different and Mom’s is invasive, aggressive and HER2+ which means now she has to have chemotherapy for 3 months for a goddamn BB. Mother AND daughter? I hate you Cancer.