This post may be a little bit scattered. I try to stick to one subject but I’ve got a couple of things to talk about right now. The title of this post has multiple meanings, as you will come to find out.
First, I have been granted a three month break from chemo. After 20 weeks of once a week treatments, my doctor decided that the side effects warranted a break. I had asked for two weeks off for an upcoming trip, but after discussing the side effects in more detail she decided that it was time for a longer break. Most worrisome to her is the neuropathy. Neuropathy is pretty gnarly. While it isn’t what I consider painful, it is annoying and a constantly present symptom that causes several issues. First of all, in case you don’t know, neuropathy is the disfunction of peripheral nerves. It causes numbness in your hands and feet.
Let’s begin with the feet. The biggest issue is balance. When you can’t feel half of your foot, there is a delay in the message being relayed to your brain with each step. It takes slightly longer for me to realize my foot is on the ground and stable. This slows me down, and I feel like I am walking funny. I’m not sure if anyone else notices, but it’s very apparent to me. My hands are numb from the 2nd knuckle to the tips of my fingers. Sometimes I drop things when I feel like I’ve got a good grip on them. Fine motor activities are difficult. Opening cans, peeling tape, picking up small objects…..don’t always go so well.
Although the neuropathy is annoying, the biggest problem for me has been fatigue. I get up, shower, get dressed, and I’m out of breath. Short walks feel like marathons. I can hardly do 1/2 of what I used to be able to do. Sleep does not help. That’s the hardest thing to explain. It’s not the type of fatigue that a couple of extra hours of sleep will help. I feel like I’m twice my actual age.
The other side effects, gastro-intestinal stuff, dry skin, baldness, finger nails separating from the nail beds, etc. are just icing on the cake of suffering. At one point, I began to truly understand how cancer patients can be kept alive, but at the same time, they don’t have any quality of life because of the treatment. When my last scan came back clear, I was so happy and excited, yet completely unable to show those emotions physically. For a second I thought “YES! I get to live longer!” The next thought was “But do I want to?” The mental toll is real as well, but that is perhaps a subject for another post.
So, what else could “Give Me a Break!” possibly mean? It’s the whole PINK thing! Every October I get on my soap box and preach to the world…..”Enough with all the pink awareness crap!” I don’t find pink necessarily offensive, I just want people to realize a couple of things. One, we have to move past awareness. It’s 2019 and everyone on the planet is aware of breast cancer. I was aware of it back in 2001 when I got my first diagnosis. It didn’t stop me from getting it. I was also aware of it in 2012, when I was re-diagnosed stage IV. Awareness didn’t stop it from spreading. People live under the delusion that wearing pink clothes, painting themselves pink, buying pink cars and pink food, painting their nails pink etc. is actually DOING something. It’s not. The only thing that truly does anything is RESEARCH! And, like everything else in the world, research costs money. I would much rather see someone donate $5 to an organization that funds research, than buy a pink t-shirt. See the end of this post for two organizations that I have found give 100% of all donations to fund actual research.
Two, being stage IV is different than having early stage breast cancer. For patients diagnosed stages 0-III, there is a beginning and end to treatment. There is still hope that they’re cured. There is reason to celebrate. For stage IV, there is no cure. The “average” survival time is 3-5 years. There will never be an end to treatment. All we can hope for is prolonged life. We hope that they will find new drugs, new treatments to keep us alive a few more months, maybe years if we’re lucky. We can’t call ourselves “survivors.” I would never deny the early stage patients the pleasure of celebrating their recoveries, it’s just that we can’t be included in that group. No one wants to talk about the 40,000 plus men and women that die of breast cancer every year. That’s not nearly as much fun as celebrating the survivors who “beat” it. I just want people to realize that cancer is not pretty, it’s not easy, it’s not fun, it’s definitely not pink.
If you’ve read this far and you’re still with me, thank you! Here are those organizations I was talking about:
Your support is so appreciated!