Just say yes to research studies

I will participate in any research study thrown at me. I feel like it’s my duty to give back in any way I can. I think about all the people who’ve participated before me in these studies and in doing so have made my navigation through cancer easier. I will pay it forward.

The first research study I was involved with was about using visualization to help control nausea in people receiving chemo. It was very much like meditation. I was given an mp3 player with a recorded visualization excercise that I would listen to once a day for three weeks – if I wanted to. I also filled out a few forms describing the daily level of nausea I had and what I did to counter it or prevent it.

The visualization study was very loose. It was based on suggestibility. They suggested I listen to the recording at least once and that was it, but it was made abundantly clear that it was just that – a suggestion. I could listen to the recording one time or every day, or do my own version of meditation, I could try ginger tea, or take the prescribed meds. I like that this study was about the power of suggestion: it planted a seed in your mind and they monitored what happened even when the subjects forget about it.

I’m involved with another study now. This one is inspired by the effects of led lights on improved hair growth in male pattern baldness. The researchers are now studying women with breast cancer who’ve lost their hair to chemo to see if it will have the same results.

This time I get a helmet with hundreds of tiny red led lights that I wear on my head every other day for 25 minutes. It’s really quite a sight, Amelia is calling me Elroy Jetson.

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Deal with it

One Valentine’s Day I framed a quote that Amelia and I love: Maybe everything is already ok. It’s a good one, and true most of the time, but it’s work. It’s not putting your head in the sand or plugging your ears. It’s meeting things head on, acknowledging them, understanding them, and moving on.

Acknowledging the past is an important part of healing from any kind of trauma. I’m not one to put on a happy face on and skip through life with one breast exclaiming, “Everything is great!” No. Now that chemo is behind me I will dig deep into my feelings about losing a body part, an amputation.

When I look back at other traumatizing things that have happened in my life (and there have been a lot – I could write another dozen blogs), I am grateful. I wouldn’t be where I am in this world without these traumas because I chose to grow through them and in spite of them. I will grow through cancer and my mastectomy as well, but not without some work. Not dealing with the emotions of my mastectomy is like emotional suicide. If I ignore it, it doesn’t go away.

All these questions and feelings have started popping up about walking around with one breast:  Am I really going to march around in a tank top publicly when it gets warm? What do I wear when I swim? Who the hell cares? How do I support the left one? I need to design my own uni-boob bra! I’d say about 80% of me doesn’t give a hoot about how I look publicly; I’m just glad to be alive. But 20% of me is insecure and full of shame and way too concerned about what others see.

There are options, I’m just not interested in them. Like “foobs,” that is, fake boobs, the inserts you put into your bra. Or reconstruction, which I opted to not do. These are very personal choices and there are no right answers. Dealing with what I now have works best for me, learning to accept my body in its most natural state, even though there is less of it now. Maybe everything is already ok.

 

 

Life after chemo

My last bad chemo was Wednesday (taxotere and carboplatin), and I find myself reflecting and wondering, What does this all mean? Where am I going next? It would be easy to disappear back down the path into “normal” life, but I choose not to.

It’s common for cancer patients to get depressed and disillusioned when their chemotherapy regimen has ended, and it makes sense when you think about it. For the last 18 weeks I’ve had continuous contact with nurses and doctors who monitored my health. In some ways getting chemo is sickly comforting – it’s supposed to be destroying cells that want to destroy my body. And now I’m not getting it anymore. The security net of chemo has been taken away. Now I get to free fall and figure out recovery on my own.

You can see the chemo on my fingernails like growth rings on a tree, except it’s not growth, it’s destruction. If you look closely you can see six ridges on my thumb nails from the six chemo treatments. Interruptions in my cell growth. My anti-growth rings. One by one the ridges will disappear over time as my healthy cells take back my body.

With chemo out of the picture I am getting a glimpse of where I’m headed, but I’m also looking in the rear view mirror. Everything has happened so quickly and I really haven’t had time to grieve the loss of my breast and five months of my life. Chaotic doesn’t even begin to describe how the last five months have been. When I take a hard look, the chaos has been around a lot longer than that; it’s been more like two years. Cancer shoved that chaos over the edge adding in a big dose of terror and mortality.

It feels like I’m going backwards, something I don’t really ever do, but I have to if I’m going to process all of this in a healthy way. I have to back up to my mastectomy and take on those feelings. I have to figure out what this all means for me and where I am going next. Backwards is the new forward.

Cancer is not a battle – for me

Cancer isn’t a fight for me. I’m not battling anything. It’s not a competition, there is no trophy to take home, and really, do we call people who die from cancer ‘losers?’ No, we don’t.

I am not being courageous. I am just a woman dealing with a curve ball thrown at my life. This is temporary. Everything we think we own or have is temporary. I am one of over 13 million people who found out they have some form of cancer last year. 232,000 women were diagnosed with invasive breast cancer and 60,000 with non-invasive DCIS, and that’s just in the United States. Those are big numbers. These numbers tell me that I am not alone. I am now connected to every single person with cancer. I recognize their sadness, struggle, and confusion as if it was my own.

There is a very intense and deep sadness that I have experienced with my cancer. My sadness doesn’t go away. It doesn’t stop me from doing anything, or make me wallow, and you wouldn’t know it was there by talking to me. It’s difficult to put put into words. I don’t speak it or wear it, I feel it.

There is no right or wrong way for anyone to deal with cancer. It’s a very personal journey and anything goes. How I handle it is right for me, and I try not to judge anyone else’s choices. I say ‘try’ because I am far from perfect and yeah, I judge people for what I think are bad decisions. Like my friend who thought he could make melanoma go away by doing coffee enemas and getting his tonsils taken out. He died within months and I was pissed for a long time about it. I write this and realize that I’m still pissed. But it wasn’t my life, and he did what was right for him. Like I am doing what is right for me.

 

 

Radiation

I met with a radiation oncologist in Rochester on Wednesday and she recommended I get radiation five days a week for six and a half weeks.

Every doctor so far has said the same thing to me, “You’re too young for this.” This doctor was no different. Her reasoning for radiation was solid: I’m young, my cancer was multi focal (which means I had multiple tiny tumors throughout the breast tissue), I’m estrogen negative, there was lymphovascular invasion, and the cancer is high grade.

My struggle and hesitation to get radiation is mainly about one thing: the risk of lymphedema in my arm. I feel like I’ve dealt with cancer, mastectomy, and chemo pretty goddamn well. I have adapted as new things have come up. But limit the use of my arm, and it may push me over the edge. It could very well tip the scales a little too much towards darkness and depression. Could I adapt to limited use of an arm? Of course, this is what we all do, adapt to our environments. This is how we survive and evolve on the most primitive level as a species.

But this could be a difficult adjustment for me. I have already been experiencing mild swelling in my wrist and hand these last few weeks. Radiation will further compromise my already compromised lymph nodes. It will scar and damage the remaining healthy lymph nodes it comes in contact with which could limit the flow of lymphatic fluid and increases the risk of more swelling.

There are things that I am doing to manage the swelling: wearing a compression sleeve and gauntlet, holding my arm above my heart several times a day, lymphatic self-massage, and physical therapy which I will start after chemo is over.

It comes down to the word “limit.” I don’t like that word. I don’t like the implications. I don’t like the sense of not having any control. Not that I truly have control over anything. Maybe this is what my struggle is about – letting go of control and accepting my limits.

 

Knock, knock. Who’s there? Cancer.

No one is exempt from cancer:  toddler, grandparent, serial killer, neighbor, asshole, rock star, plumber, homeless person, new parent, cop, cashier. I am not exempt. You are not exempt. Cancer is like a monster creeping around the house, waiting to scare the bejesus out of you when you least expect it and then refusing to leave like an uninvited house guest.

The number of people I know who have or used have cancer seems to be increasing by the month. Off the top of my head I just counted 12 people. It’s becoming a common occurrence. We can chock it up to so many things and debate causes and treatments, but one thing is for certain; cancer isn’t going away anytime soon.

Me getting cancer is now what I call a direct hit. It’s one of those things that you truly do not understand until it happens to you. For me a direct hit is something that happens to myself or Amelia, someone who I live with and see every single day of my life. I love my close friends and family, but when something bad happens to them, it’s a little more of an indirect hit. At least it was prior to my diagnosis. Now it’s different. When even an acquaintance gets diagnosed with cancer, I feel like my heart is taking a direct hit. Now I understand. Now I get it.