“Home is a refuge, not only from the world but a refuge from my worries, my terrible concerns. I like beautiful things around me. I like to be beautiful, because it delights my eyes and my soul is lifted up.” – Maya Angelou
What a summer! Tons of fun with a touch of not so fun. Now, it’s back to the grind. Well, for everyone else in the house, I never get a break with my grind. Not meant to be pity comment, because I don’t mind my grind.
Hannah started Kindergarten. I was diagnosed with Stage IV breast cancer when she was 4 years old, given 2 years to live without treatment. Of course the thought that I wouldn’t see her first day of Kindergarten crossed my mind. Isabel goes to Kindergarten next year, of course that thought currently goes through my mind. That’s my normal.
I have had 3 rounds of chemo and 2 pretty good follow up visits with my oncologists since I was discharged from the hospital. My chest still hurts and the pain is still the same, which is okay in my book. I took Izzy to the hospital with me a few weeks ago when I had my follow up with my oncologists. She sat with me when I had my labs and rubbed my arm. My doctors loved her and she sat there the whole time while I was checked up and down and all my lymph nodes were examined, she kept asking them questions about me and what they were doing, it was really good for her and for me. Her mother has cancer and she knows that I go to chemo all the time and sometimes I go to the doctor and don’t come home. After her tour of the cancer floor, she feels much better about my whereabouts when I go.
I attended a conference at UNC Chapel Hill last week for the Metastatic Breast Cancer Network. What an amazing group of people and brilliant doctors. For the first time since my diagnosis, I was surrounded by people who were living with Stage IV breast cancer. All of them. Each one a different story. Each one a different chemo, treatment, therapy. Wow. Just wow. Very Inspiring and also very informative. Got to get a glimpse of what the next 5 years or so could look for me as far as targeted therapies for my type of breast cancer. It was very therapeutic for me and I am glad I got the chance to go.
I also started acupuncture which has helped with my sleep tremendously. I wake up and feel like I had the best sleep ever. I hated the insomnia from my mind racing when I would lie down at night, thinking about saving the world and finding a cure for cancer. I also tried Chinese wet cupping therapy last week because the knots in my neck and shoulders from the stress that I carry there were so painful and were limiting my range of motion. What an incredible experience that was! All the stagnant blood that had no nutrients and just building up in the tight muscles in my neck and shoulders was sucked out of my skin. I still have the bruises and when I was visiting with my oncologists today, they were not happy when they saw the aftermath. I had my labs drawn today before my chemo and all my blood counts were low. Sometimes I forget that I am not normal and I have a compromised immune system and I can’t go around letting people stick needles in my back and suck out blood with huge glass fish bowls, for risk of infection of course. I certainly don’t need any more hospital stays. BUT, I got so much relief from cupping! All the knots are gone and I have no more pain in that area (except for the bruising).
The past few months have been, for lack of a better term, eye opening. I have had encounters with people in all different situations that have been learning experiences for me. I see things so different, I see things through the eyes of my kids. I see rainbows and puffy white clouds. I want my children to see a healthy mother and someone they can snuggle with when they are sick and not have to worry about whether or not its going to get me sick.
I’m at a point right now where I know I have learned to live with cancer. Ugh, when I say that sentence out loud, I want to throw up. But, it’s true. My kids are no longer freaked out. They have completely accepted my condition and everything that comes with it and as hard as that is for me to admit sometimes, it’s my life. It may not sound glamorous to most, but it is to me. I’ve been given a chance to be the best mother/wife/friend/daughter I can be, and that’s what I need to do. Life is all about choices, whether you argue that or not. Of course, I didn’t choose to get breast cancer! But I choose how to move forward with it. Lately, I’ve been getting approached more often about how “wonderful” I look. My new “haircut”. Some people can’t believe that I am actually sick and I have breast cancer. “How can you have terminal cancer and look so great?” I hear this question alllllll the time.
Honestly, I am thriving with Stage IV cancer right now. It may be because I know that my time is now shorter than longer. It may be because I have made new long term goals, now that my “before cancer” dreams are no longer attainable. Although I say all the time, “I don’t have time for cancer”, it is a full time job for me. The average prognosis for people living with metastatic breast cancer is 2-4 years and this is with treatment. Now, there are people who have lived longer than that and are living longer than that and I even personally met some while I was at the conference but there is no cure. I will never beat this cancer. I can live with it as a chronic disease and hopefully keep it under control but I will never beat it. I don’t live with false hope, I live with real hope. I have lots of hope and faith and I know that I have a lot of fight left and I will continue to fight until there is no fight left. New therapies are being tested and approved all the time and there are some in the pipeline right now for the type of cancer I have. The one I am on right now is cutting edge and just made the news as being the best on the market giving an average life extension of 16 months to the average prognosis. It may not seem like much, 16 months! In fact, it is, it means research is being done to help extend the lives of people living (thriving) with Stage IV breast cancer. Wednesday is October 1st, the start of breast cancer awareness month and I now notice all the ribbons and awareness. There is a lot of controversy spewing around social media right now about PinkTober and that a very small percentage actually goes towards breast cancer research. I don’t really pay much attention to it, but if it gets people talking and there is some awareness, I will take it. I have the kind of breast cancer that kills and any attention that can get can only be positive.
Happy Fall Everyone!