When I first started this blog in August 2012, I told myself that I would be truthful and not hold back when posting. For the most part I have done just that. My life has altered greatly over the last year (even though I am 3 years post diagnosis) and I am going to go back in time a bit and try to put in words how life has changed post cancer treatment.
Around the beginning of the year I realized that the pain in my upper back and shoulders was getting worse. This pain is called intercostal neuralgia and is caused by nerve damage from the mastectomy and even more so from the surgery to remove excessive scar tissue. I have nerve damage on 5 levels bilaterally. I was continuing to work but slowly the days were getting harder to make it through to the end. I would go to my sisters house on my lunch hour so I could rest. After work I would come home and go straight to bed to rest before I could eat dinner. I was miserable and in pain all of the time. Holding my arms up in order to type all day caused by back and shoulders to ache and burn terribly. It is a burning pain that is hard to describe. In addition to the back and shoulder pain, the neuropathy in my hands and feet were causing some increased issues. For the most part, my feet and fingertips are numb, but I also get shooting, burning pain in my feet. And trying to walk with numb feet can pose some dangers. Steps are a problem and I have to watch carefully where I step.
In addition to the pain, I was having issues with memory and concentration. I knew that I had “chemo brain” during and right after chemo, but I did not realize that it could sometimes worsen later on. I was beginning to have problems at work with being able to concentrate and stay on task as well as suddenly having trouble remembering how to do certain things that I had been doing for two years. At first I was blaming the increased work load, changes or updates to the computer program, interruptions from the constant phone calls, and even my coworkers. I know that I alienated a few coworkers because I became short tempered and irritable. For those who know me personally, you know that it is not the normal Deb. Eventually I had to admit that the problem was actually me. I had to look through my files and find my old “cheat sheet” from when I first started my job. I had to look at it quite often and it was very frustrating. I knew that I was not keeping up at work and that was causing my coworkers to fall behind as well because they could not do their job until mine was completed.
As if the above issues aren’t enough, the chemo brain/fog has also caused some issues with using the correct word. It is very frustrating and embarrassing when you are in the midst of a conversation and your mind goes completely blank and you cannot think of the word that you are looking for. A word as simple as tooth brush or refrigerator. Or I can be talking and say the wrong word when I mean something completely different. Oh..and throw in stress and everything worsens! Stress is not my friend!!!
The post cancer Deb is a mess at times. I am 40 years old and sometimes I feel like I am 80. I am post-menopausal, have raging hot flashes, no sex drive, insomnia, trouble focusing, weight gain from the medications, bone loss, and probably other things that I can’t remember right now. (That was a joke…kind of)
Chronic pain can completely sap you of your energy. The life that I was living was not really living. Nick and I decided that it was time for me to quit work and concentrate on me. I do what I can according to the day and rest when I need to. The biggest change for me has been learning how to say “No”. When I am having difficulty with that, Nick steps in and says it for me. He is not being overbearing. He is just taking care of me and he knows me well and he can see that sometimes I am trying to do to much and he takes over and says NO. I am grateful to have him watching my back at all times and making sure that I am doing what is best for me.
I am forever grateful to be alive..to have kicked cancers ass to the curb. Believe me..I am thankful and grateful even if it seems like this post is full of problems and complaints. This post is 100% honest. I don’t want to sugarcoat everything and have another person out there who is secretly going through the same thing and feeling that she is alone and a wimp. I want people to understand that even when you are so very thankful to be alive, sometimes coming to terms with the “new you” takes time to adjust. This is also true for your family, friends, and coworkers.
There are days when I feel as if I am battling my new post cancer self. There are times when I am so proud of myself, of the things that I have done to try to empower and help other women going through the same journey. Days where I am proud and know that I am strong and that I am a survivor! Then comes the days when I am scared. Scared that the cancer could come back..scared that it has already come back and I just don’t know it yet. Some days I feel weak because I let the pain win. The pain in my back, shoulders, and hips. The implants that feel like cold, hard blobs on my chest. Blobs that do not move. I look at my new body and some days I am proud of my battle scars and other days I think that I look like a freak.
I always thought that once treatment (surgery and chemo) was over that all was good. My hair grew back (even if it is still kind of patchy) and I am currently NED (No evidence of disease). But for me that was when the hard part started. During treatment I was able to hold on and go for the ride that my team of doctors controlled. Now I am the one in control and sometimes I feel that my life is spinning out of control. It is hard to process everything that I have been through especially when my brain doesn’t want to cooperate.
I envy the survivors who are able to work through all of the changes in their life with style and grace when for me it is a messy struggle.