Wednesday, December 30, 2015

the unbearable lightness of being bald

I wrote this post on July 15, 2015:

Life is full of decisions. Every day we have to decide things. What to wear, what to eat, when to get up, when to go to bed, what to read, what to watch on television, what to read and comment on, browse etc on the internet. When I take a day off from life, I usually try to limit my decisions to no brainers, or things that are easy to choose and use minimal brain cell energy. Do you have days like that?

Most of the time my brain is whirring away with the next idea, the next thing I want to do, the next thing to learn or see or listen to.

Until May. I don't remember the specific day, but I remember what I was doing. I was having lunch with Wretch when I got the call that changed my life as I had known it. The call that made the suspicion a reality. From that point on, my thinking changed. I had trouble concentrating and finding words. I still do at times. That is probably because I have turned off part of my brain lately.

I want to be left alone. There are many times I don't want to talk to anyone, or listen to what they have to say. I have absolutely no ideas running around inside my head part of the time. Just this......void. A sort of nothing. There are times I go numb. I can't feel any emotion, I can't connect to any thoughts. I just...am.

This doesn't last all the time, thank goodness. Because if it did I would begin to resemble a vegetable. Broccoli most likely. Not for any particular reason, but because I like broccoli. It can lay down, or stand up, and even though it has a big head, it doesn't do much thinking. It describes how I feel a lot of the time lately. Standing, big head, and no thoughts going on inside that big head.

It has been a long 2 months since that fateful phone call. Sometimes it feels like a dream that I will wake up from.

I'm still waiting to wake up.

December 30, 2015:


Today my outlook and thoughts are a bit different. This year has definitely been a challenge on a personal level. I hit some low points I never thought I would have to face in my life. I'm not one to natter on about stuff, but I would like to share some things that happened to me, with the hope that if anyone else faces breast cancer, they will have some knowledge of things happening to them.

In May, I was diagnosed with breast cancer. Not all breast cancers are equal, and because of a yearly mammogram, I was lucky. My cancer was very early stage, and very small. And very treatable. I felt at that point that I had won the cancer lottery.

At the end of May I had surgery, and then I had to have surgery again in June. It seems pretty common that when a woman has a lumpectomy, there is often a positive margin that requires a second surgery, or resection. I had some pain, but the main thing was that I was limited in what I could do, and that was frustrating for me.

In July, I saw my oncologists. In my brain, there would be one oncologist, but that isn't the way things work. One doctor handled the medication I would be taking, and the other the radiation I would be receiving. This is standard treatment for very early stage breast cancer. The staff at the cancer center were wonderful, and I felt an atmosphere of support, and a camaraderie among the patients, because we were all in the same boat, rowing with identical oars.

At the end of August, two things happened that would make September and October the most difficult and challenging months of my life. I started taking Femara, a medication that blocks your body from producing any estrogen, a pretty vital hormone for women. My cancer was estrogen positive, which increased the risk of it returning. I was taking estrogen at the time, and was told I needed to stop taking it. So the day I swallowed the first Femara, I stopped the Estratest. Cold turkey, no tapering, just did it. I also started taking radiation treatments 5 days a week for 6 weeks on August 24th.

By the third week in September I was feeling hopeless. No energy, fatigue so extreme that many days I had to leave work early so that I would be able to walk up the steps and in the front door of my home. I've never felt anything so overwhelming in my life. I finally told the nurses at the center how I was feeling, and that if the next 5 years of taking this medication were going to make me feel like this, I didn't want to go on.

I'll never forget what they said to me. "Oh you are depressed! You need to go to see your primary care doctor, and ask for something for anxiety, depression, and something to help you sleep." I was dumbfounded. First, because I hadn't been able to figure out what was going on with me (I am a nurse after all and have cared for people with depression for many years). At the same time I was SO glad they had put a name to my misery. I was so depressed, I couldn't even cry, or laugh, or feel any emotion. Take my word for it, that is a pretty miserable place to be. I hated the thought of more medications, but at that point was willing to try anything.

The second thing that struck my mind when the nurses chirped out that information to me, was that I was not alone.  Even deep in this dark place, I felt less alone, less isolated. The next week I saw my family doctor, and we opted for Clonidine for sleep. Even though it is for blood pressure, taken at night it can help with sleep. He also prescribed a low dose of Celexa, an antidepressant that also helps with anxiety. Another recommendation was Black Cohosh, a natural supplement that helps with hot flashes, because at that point I was also going through menopause for the second time in my life.

Three days later, Stevie Wonder said "you're feeling better aren't you?"

And I was. I could already feel the effects of the medications. When the medication is right, it makes a big difference in the quality of your life. So depression was zapped, but I was having other side effects from the Femara. Bone and joint pain from hell. Some days it was so bad I could barely make it through the day. I lived on ibuprofen just so I could function. I even took it at night, because just turning over in my sleep could cause me to wake up from the pain. I have a high pain tolerance, and this medication found that spot and tap danced on it with spike heels.

At the same time, my right breast, which I thought was going to escape burns from radiation, decided to let me know that my luck had run out. My boob began to resemble a piece of fried bacon. And let me tell you, the smell of radiated flesh dying and sloughing off in sheets is not something you want to have going on with a part of your body that is located right under your nose. And of course, with burns there is pain too. I guess you could say that the bone pain distracted me from the burn pain a bit. Thank god for ibuprofen.

image from Wikia.com
Then my vanity took a hit. My hair had begun to fall out. Just a bit at first. By October it was coming out in handfuls. This hurt my pride, because I had spent almost a year letting my hair grow out, something I hadn't done since I was 10. There was my effort, going down the drain. I was a bit miffed because my family doctor and oncologist both said they thought it was temporary. The Onc thought it was male pattern baldness from loss of estrogen (GREAT), but I realized two things. One, there was NO male pattern baldness in my family (even my sick 84 yr old mother had a headful of hair), and two, male pattern baldness affects the top of your head, and my hair was coming out all over.

The good thing about the hair loss...it took my mind off the pain, and gave me a chance to try out some really expensive shampoos and hair treatments that I would never have had a chance to try. I decided I was going to keep this hair I had grown until I looked like Gollum in Lord of the Rings. I also had a follow up appointment in December with the oncologist, who decided to stop the Femara, and start another medication. As of today, the bone pain has stopped.

And...my eyelashes and eyebrows are starting to fall out. I have to laugh though. I made it through the darkest time of my life, and came out smiling.

...every day is a new adventure...  ~cat
i am @jonesbabie on twitter
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