I was waiting for my blood test results at Oncology and I picked up a book called “Crazy Sexy Cancer”.
I knew right away she was young, and the advice was definitely for younger cancer victims but I did get a chuckle out of it and admired this woman, God bless her because cancer sucks! And why the hell are so many young women getting this?
I just want to go around the country and slap people on the side of the head and say “Wake up people! There’s something wrong here! There are too many younger women getting Stage IV breast cancer!”
Do I really think we can find a cure for cancer? I am skeptical. I pray for our scientists every day because they have a tough job. Some of our greedy government people have made it even harder for them by damaging our food, water and the air we breathe.
I was cancer free, a survivor, who did the walks, wore the pink and yelled YEA I’M A WARRIOR and then got the news it spread to other parts of my body.
Am I now a survivor? When I was told I was cancer free in 2010 I felt like a survivor, what am I now?
I really did not know where I belonged.
Visiting my sister Kathy’s family in Minnesota, my Niece gave my Mom and I a pretty survivor ornament of a beautiful flower (no pink). My first thought was negative because I don’t feel like a survivor. Kristy said we ARE survivors for what we have lived through past and present. I needed those words.
Now I am fighting for my life. It sucks. I wish I could feel the way I did in 2010.
I no longer attend the Survivor night festivities at the local Cancer walk. I don’t want to wear pink. I used to belong to the cancer free club, not anymore.
After searching on the internet, I found others like me that had their cancer spread to other parts of their bodies. The new club I belong to is called Metavivor. There are 154,794 of us according to the most recent study by the National Cancer Institute.
Searching through Facebook, I found Closed Groups that understood me; Metastatic Breast Cancer CDK group; Thriving with Advanced Metastatic Breast Cancer, MBC Project, Metavivor Research and Support.
We are a mixed group of emotions that changes from day to day. What we have in common is we want to LIVE and we need more research to do this! Finally Susan G. Komen in August of 2016 donated $375,000 towards MBC. I am thankful for this donation but personally I do not think it is enough from this large organization.
How much does our Government spend on MBC?
This is a paragraph from the Metavivor page:
In the United States, someone dies from breast cancer every 14 minutes. This number has not decreased significantly in nearly 40 years despite a huge movement to raise awareness and funds for breast cancer research. Just wearing, buying, or even walking for “pink” does not reduce deaths from breast cancer. Scientists know that research specifically focused on metastasis is crucial to significantly reduce the breast cancer mortality rate. Metastasis research is challenging for various reasons. However, the biggest obstacle is lack of funding: only an estimated 2-5% of the funds raised for breast cancer research is spent on studies of metastasis.
Think about that percentage that is not enough. My cancer spread but I did everything right to fight the cancer, chemo, radiation, mastectomy, preventative medicines. Don’t you think we should find out WHY it comes back? Unfortunately, a percentage of those Pink Warriors will be in my shoes one day.
I am so thankful for the Metavivor groups I have found. They understand me. I read about hopes and dreams, and funny things that happen day to day. My fellow Metavivor’s discuss their side effects, the disappointments. We give encouragement when a medicine doesn’t work. We celebrate when the results are NED (no evidence of disease). We say our prayers for the ones who have left us too soon.
I have been on Xgeva for a year now. Xgeva helps to strengthen and fill up my holey bones. It also can give you dental problems which apparently I was getting.
At the end of April, 2017, It started with a toothache. I went to see my regular Dentist who informed me I need to see a specialist on my tooth. It was infected and it effin hurt!
I made an appointment to see the specialist, a big burly Italian with a heart of gold but huge hands! It was decided to pull the tooth. I cannot even explain the pain of those needles going into my infected gums! The Assistant let me squeeze her arm and believe me I hurt her. They pulled the tooth out. I am not ashamed to admit that I cried like a baby.
Not even a week passed when the next tooth was in excruciating pain and I felt something in my gum area. Again, I went to see my regular Dentist who again sent me to the Specialist. He informed me that I would need to pull the other tooth out and that my jaw bone was exposed. The needles went back into my gums (they gave me a squeeze ball this time!) and pulled the second tooth. Then he proceeded to grind down my jaw bone and stitch it up.
It’s been over a month and my mouth is healing slowly and it hurts. I am on Penicillin and a special mouthwash to prevent infection. I have been experimenting with my cannabis to ease the pain and thankfully it has helped.
Speaking about cannabis, I was overwhelmed by all the information on this subject. I was thankful to find this website of Breast Cancer survivor, Kaiulani Facciani, What I did & Do and Why. For me it was Cannabis 101 which is what I needed. If you are curious on this subject I encourage you to read her blog.
Cannabis is not a joke. I personally resent the obnoxious posts on Facebook that show off their Medical Marijuana as a recreational fun time. No wonder our society has a problem accepting it.
Eating has been a challenge. I need to rinse out the area where my teeth were removed for food particles that may have found their way into the open space. I have to rest my jaw (which is not easy for me to do).
I have not had an Xgeva shot for two months now. It worries me because of the great progress I was making. It seems that the medicines to help keep you strong will also damage you somewhere else.
I will probably have to go to quarterly shots of Xgeva when my mouth finally heals. Cancer sucks.
Even though on the outside I am looking well, and my attitude is good, I have my days when I am hanging by a thread and when you ask me “how are you?” and my answer is “hanging in there”
It’s one of those days.
I have been working on a new project. Music means so much to me. I have been compiling a list of all my favorite bands and picking out a favorite song from each of them. This is not easy, think of trying to pick out your favorite song of the Beatles! If I don’t limit it to one song per band it will be out of control. There will be songs that remind me of people in my life. It will be fun to go down memory lane and share songs on a CD as a keepsake of me.
Wish me luck!
Please consider donating to:
Metavivor.org or BCRFcure.org