January 28, 2015
The last couple of weeks have been somewhat trying for me, for some of the things that have come up, I’ve bit my tongue, kept my thoughts to myself, but then there are a few that I didn’t. Ok, not really a few, but you understand.
Last week, I was having a particularly hard day with my joints, my hips and the bottom of my feet were hurting pretty badly; my guess is that even though I thought the neuropathy was gone, it isn’t, so I posted on Facebook as to what I believe are some misconceptions regarding people who have had, or currently have cancer. I got some negative feedback on that post; one person even said I was using cancer as a crutch and then proceeded to post elsewhere about women missing the attention when they were in active treatment, I took that as a jab at me, and yes I spoke up. I was very aggravated by this comment, and there were some who saw the comments and felt the same way that I did, attacked and aggravated.
I have been very vocal in regards to my diagnosis, surgeries, chemo, radiation and hormone suppressor treatment; partly because it has helped me to deal with what I have and am going through; then on the flip side of that coin is my desire to help others who are facing the sea of pink, whether they are a cancer patient, a care giver or a support person.
You see, breast cancer is about more than a pink ribbon, after all the surgeries are over, the hair has grown back and the radiation burns have healed – the average (or in this case, me) person is not done, they don’t get to go back to their old life pre-cancer, life becomes a new normal, so let’s talk about that briefly.
First, there is the emotional toll that a cancer diagnosis takes on you, both mentally and physically. I was a mess, and I do a complete mess from the day I learned my mammogram was bad until a few days after I received my diagnosis. I shut down. The only way I would talk to someone was via text, email or Facebook chat. I would go to work and that was it, I wouldn’t cook, do laundry, etc. I shut down in a serious fashion. I went through a lot emotionally in that month of not knowing and it took it’s toll on me.
Second, I had 6 different surgeries related to my breast cancer. SIX! That’s six times of being put under anesthesia, six times that I had to recover, six times I fought through the pain because I didn’t want to give into the pain pills (I’m stubborn like that); six times we seriously scrubbed surgical tape and glue off my body, with the last time leaving me with a horrible reaction and burn from the surgical tape, I was more miserable from that than the actual surgery.
Third, 16 rounds of chemo. The first 4 rounds went like this: Every 3 weeks I went in and was pumped full of steroids before my chemo was administered; I would come home and be awake for a little over 24 hours before being able to sleep, which led into my 5, yes, FIVE day chemo crash, or as I called it, chemocoma. I literally slept for 5 times straight with a rare times of being awake long enough to use the bathroom and eat something small. Repeat in 3 weeks. Long term effects of chemo…….compromised immune system and chemo brain (memory loss).
Fourth, 34 rounds of radiation, which I started exactly 6 days after finishing chemo. I ended up with some very nasty burns on the side of my breast, I did give in and take pain pills, just so I could sleep. The burns were deep, I had big blisters, the skin was just about black and finally peeled. Because of the radiation, I now have to massage my breast daily to keep scar tissue from building up and the implant drawing up and becoming smaller. I am told this is very painful if it happens and cuts down the chances of having the implant replaced. I recently learned that because of the radiation, I am now at a higher risk for skin cancer. I’m having a small spot on my chest looked at this Friday by a dermatologist for what Dr. Google and I have diagnosed as basal cell carcinoma.
Fifth, hormone suppressors. I am now on the last of the 3 available drugs I can take to keep my hormones from turning others into estrogen, once this last one stops working, or I can’t handle the side effects any longer, I have to start all over (Femara, Arimidex and Aromasin). Each one has it’s own side effects, so it became the lesser of two evils, what can my body handle best……right now, we are going with bone/joint pain and neuropathy.
Sixth, I will forever have a compromised immune system. I recently had a upper respiratory infection, the fatigue was horrible. When I asked my oncologist about it, she said that isn’t unusual. This concerns me, what will happen if I get really sick, say with the flu, or even pneumonia. I can’t imagine the fatigue that will come with one of those.
So, you see, the average person may look at me and think I’m all better now that I’m finished with everything, when in reality, I’m far from it. I’ll never be 100% better, and that sucks for not only me, but for my family too. I can’t begin to count, or try to grasp the number of times I have had a conversation with them, then turned around and asked the exact same question because I don’t remember the conversation that we JUST HAD. Can you imagine just how frustrating that is for me, and them too?
The memory loss is just as frustrating for me, personally, as the bone/joint pain is. Both things hold me back. For instance, if something isn’t a repetitive thing, I forget unless I write it down, or more seriously, put it in my phone with an alarm. I don’t know how to make others understand what this is like, it’s not something I choose to have in my life, or use as an excuse, it’s MY truth, my absolute truth.
I wish to God that cancer had never came into my life, but it did, and I am damn proud of how I handled myself. I fought hard to get where I am now. I have often times wondered what my purpose in life is, and I think being there to help others navigate this sea of pink is my calling. I’m going to dr’s visits with one friend who is a breast cancer survivor with mets to the bone, I’ve been asked to reach out to someone I’ve never met after they were diagnosed, I’ve been contacted when a mammogram comes back bad, I’ve been asked how someone can help someone they love through breast cancer; and I’ve been called when a routine test showed something abnormal.
Yep, I use cancer as a crutch.
It is my hope and pray, that my story, my being so honest and vocal will help another woman through, gives her someone to talk to that understands. It is my hope that I can help a care giver, loved one or support person understand what their loved one is actually going through, you see, it never truly ends and to insinuate we (I) use it as a crutch or dwell on it is really a slap in the face.
My advice to you, unless you are living inside the cancer patients body, experience their thoughts, feelings, pain; are in the surgery rooms, hear word for word what the oncologist says, takes those hormone suppressors and experiences the side effects – don’t pass judgement, don’t take jabs, try to understand; cancer is hard enough to navigate with out negativity being forced on us when we are doing our best to remain positive.
I am one hell of a fighter, I’m strong willed, I’m determined and I never back down from a good fight, I kicked cancers ass after all! But what I won’t tolerate is being judged when someone doesn’t truly know the situation.
I know my circle, and I know my truth – God and I know and that is all that truly matters. If you don’t believe me, I’ll let you ask him when you stand in judgement.
Letting go of my anger over this now.
Carry on and remember – it’s about more than a pink ribbon
PS – if you want to follow someone who really talks about breast cancer, look up Stupid Dumb Breast Cancer on Facebook and the web, watch her feed then tell her she uses it as a crutch, let me know how that works for you.