How Long Do I Have?

When we are first diagnosed with cancer, one of the first questions we ask is 'how long do I have?' We assume/hope/pretend we will beat our cancer and live a long life. But for me, the little voice inside has always asked 'will I live a long time after the beating my body has taken, mostly due to cancer treatment?'

With two cancer diagnoses behind me, I have wondered how long I will live. My family mostly lives into their 80s, my parents are currently 86 and 88, my maternal grandmother lived to 96. I have always thought I will make it a while longer, being very indeterminate. I don't think I am dying anytime soon.

My body is not what we call 'in good shape'. I have aches and pains all the time, as well as arching pains across my back, twinging hips, throbbing knees. All of this wears on my body. It has gotten me concerned.

I am currently 35 years from a thyroid cancer diagnosis and 9 years from a breast cancer diagnosis. But today I read about a woman who is 50 years from her breast cancer diagnosis. She was diagnosed at age 29 in 1966. Now she is 79 and still here.

That is very encouraging. I really hope to make it 50 years after both cancer diagnoses. I have 15 and 41 years go to. I am not sure if that 41 years is doable for me but I wouldn't mind.

So I hope you are also encouraged by this as I am. With a breast cancer diagnosis, we deal with surgery, radiation, chemotherapy, and more. Our bodies are stressed and strained. But now we have a hero to look up to. If she can do it, so can we.

Lymphedema and the lymph system

So as an extra gift with breast cancer, I have lymphedema in my left arm. I am very coordinated and fell on our icy front walk and landed on my hand. My arm swelled up and voila, I have lymphedema. I have a 'lovely', 'skin tone' sleeve that I get to wear sometimes. It even provides some sun protection so I get a tan line on my wrist.

So what is the lymph system? I had no idea until I fell that day. I sometimes try to find more information on the lymph system.

First of all what is lymph? That clear fluid that seeps out of blisters and cuts sometimes. Its the other system in your body like your blood system but it has white blood cells and cleans out the dirty cells.

The smart people at Dana Farber provided this nice picture and a more detailed description on their blog here.

So if you look at the picture in detail, you will see how it flows around your body. And its pretty much divided in four quadrants of the body: top right, top left, bottom right, bottom left. Lymph nodes are lymphatic coolers. But if some get taken out, a 'traffic jam' occurs and all that lymph fluid gets backed up in whatever part of your body is beyond the incisions.

In my case, they took a big scoop under my left arm that grabbed a whole bunch of nodes. So the little lymphs get stuck in my arm which swells and is permanently larger than my right, dominant hand.

A former co-worker of mine had a bad leg from something traumatic and walked with a lymph. He ended up in the hospital for six months with lymphedema in his leg. I have a friend who had lymphedema in her arm and also on her side and in her abdomen. With treatment, she is now a smaller size in her torso.

So this is a nice little education class for the day. Class dismissed.

Breast Cancer Retrospective

Before my breast cancer diagnosis, I was aware of breast cancer around me. A co-worker's mother, another co-worker's wife, my parent's neighbor, and more. But it never really touched me because no one I knew personally was diagnosed with breast cancer. It was a disease of older women. I also felt because I had previously had cancer that sometimes people expected me to be more sympathetic to other's cancer diagnoses. I did feel some guilt because of this.

I never expected to be diagnosed with another cancer. I felt I already had my share of cancer with thyroid cancer. I didn't 'deserve' any more. Because I had a benign breast tumor at age 22, I really did have my share of medical crap. However I got to have a mammogram every year from then. How fun is that!

At age 45, my annual mammogram was scheduled for January - just as I was starting a new job. I pushed it back to early May so I wasn't a new employee who immediately needed time off. I mean it was just a mammogram that I had had for years upon years upon years. No big deal. BUT that was the bad one. They called me back for extra scans and then they sent me for an immediate ultrasound which was bad.

I was in denial. My mammogram was May 8. My recall mammogram was May 14. (I was laid off from my job on May 18.) Then I saw the surgeon May 23 and had a needle biopsy on May 29. I was called on May 31 to get the news that I had breast cancer. Until I got that phone call from my surgeon, I was in denial. I could not have another cancer. No way. No how. Not me!

I stayed in denial for a long time. I did join a support group before my second surgery to make sure I had the emotional support I needed. Once I was diagnosed with cancer a second time, I was not going to let cancer suck anymore time out of my life so I started working on the emotional side of me.

I started getting pissed off. I mean cancer had stolen so much out of my 20s and 30s and early 40s that I wasn't going to let it happen again.

I think I finally got into the grief stage early in chemo when my hair was falling out, I had neutropenia, was hospitalized, and I felt like shit. Seriously the days when my hair was falling out, I was stuck in a hospital bed. I was so sad about how bad I felt and how much my life had changed. I was not happy.

I really struggled during chemo when I had to keep going to chemo and again and again. It was really hard. I love food and love to cook but I spent most of my five months of chemo focusing on keeping food in my stomach, living on the BRAT diet, and running out of rooms due to the aromas rising from plates of food. (But did I lose weight? No!) I was depressed then. I was in a second support group for women with breast cancer. It was designed as an 'introduction to breast cancer' for the newly diagnosed. But I still struggled.

Finally chemo ended and I started radiation and found a therapist. We spent a lot of time discussing the changes cancer makes in your life. I did struggle emotionally but I hoped I had enough support. Then my health started to tank. If you thought I had it bad with breast cancer, my life since then has been a never ending list of medical disaster after medical disaster.

Breast cancer continued to loom over my life. Even though I had a non stop list of medical disasters I considered myself to be a breast cancer patient. Why? Because I identified it that way. I didn't put a pink label on myself but I still thought of myself that way. Somewhere along the way I decided I couldn't let breast cancer identify me. I mean I am not a 'pink warrior' or anything like that.

Was I depressed? Yes because every time I took one step forward, I felt like I slid two steps back. Am I still depressed? I think so. I have to cope every day with the fact that not only was I diagnosed with cancer twice, I no longer can work. I need to plan my life around my limitations. The list of things I can't do is huge. Can I meet friends for shopping or a museum? No. How about out to dinner and a movie? No.

But breast cancer doesn't dominate my life I may not still be in the depression stage from it. So post cancer depression? Maybe not. Maybe I am finally getting to the acceptance stage. Its been a long road. Every mammogram raises my scanxiety level. Again. I am not sure that is ever going away. Every doctor appointment which includes a breast exam gives me a twinge.... I accept that I have breast cancer and that it will loom over me for the rest of my life. 

Post Breast Cancer, Happiness Is A Clear Mammogram

I had my mammogram last week. I don't talk about these ahead of time because I don't feel the need to. If I feel the need to, you can bet my blog will be covered in mammogram information.

But even if I don't talk about it, doesn't mean I am not thinking about it. You can bet I was thinking about it. I was convinced that I had a recurrence and I timed my mammogram (for two days before my annual oncologist appointment). I was sure I had a something.

I had already started putting together a plan in my head on how I was going to handle it, tell people, deal with treatment, talk to my oncologist on Friday about it. I was positive.

I can convince myself I am going to die next week if I really try. Anyone who has gone through a cancer diagnosis can easily convince themselves its back. Face it, there is always that little tiny voice in the back of your head that says you know it has come back. It whispers in your ear while you are sleeping, or trying to sleep, in the middle of the night.

But I am so happy that it was clean, nothing exciting to talk about. I talked with my oncologist about it just to be sure. But in the meantime, I am happy.