Wednesday, April 26, 2017

Genetics, Hot Flashes, Mutations, Chemo, Appointments and Vacations. I like Vacations Best!

Here we are, the end of April..... I was diagnosed the end of November.  I am about to start my 6th month of chemotherapy.  How am I doing? I really am tolerating my treatment well. Hot flashes from the instant menopause are grueling and keep me up at night, but I can live with that. I still have my long hair, I have a nice golden tan from my recent trip to the Bahamas. I am working full time and really try to be grateful for each day. Of course I am grateful.... I have so much to be grateful for. I have a wonderful support system and people everywhere offering me help.  Yet I find myself so lonely.  Cancer is lonely, stage 4 cancer is really lonely. I realize we are all dying, any one of us can be taken from earth at any time. All any of us have is THIS moment but that is made much more precious when living with terminal cancer. I haven't taught my kids everything they need to know yet, I still have a long bucket list, I want to learn to sew, I want to become a good cook, I want to travel the world. See a volcano, a glacier. I want to climb a mountain.  I need to get busy living with cancer, preparing for a future yet I feel like I need to prepare for the future without me in it also... I wake up each day and try to take it for what it is... I try to live in the moment, live in the present. Cherish each moment with those I love, yet I can't get cancer, stage 4 cancer off my mind. How long will I feel well? How long before my cancer will out smart my treatment? It's exhausting... Keep surrendering to the Lord, Chris.... I keep telling myself that.

I have learned after my 3rd round of genetic testing that I carry the Palb2 gene which is a newly discovered gene linked to breast cancer, and I also may carry the MSH2 gene known as Lynch Syndrome  which is linked to numerous cancers. I am still waiting for a final report to come from the University of Michigan to determine the MSH2 mutation.  So, now I find myself reading, and reading about what to eat,  what to take, what to do. To help reduce any greater risks for myself and my kids, each of them have a 50 percent chance of carrying these mutations.  At some point we will have them tested. My genetics counselor suggested Brooke have her first mammogram at age 20.  In 2008 when I was first tested the only known Breast Cancer mutations were the BRCA 1 and 2 genes.  In 2014 when tested again there were 16 known mutations and today there are over 30 known mutations linked to breast cancer.  That is a lot of advancement in 9 years, but it isn't enough.  My Palb2 mutation is so newly discovered that they don't know a lot about how to treat patients with it,  or what works best.  I am enrolled in a case study and U of M is following my case.   I want to know everything I can about this gene and what we can do in the future to prevent loved ones from becoming stage 4 as I did.

Life is good.  For spring break we spent 4 days in Charleston S.C. being tourist and learning about history of S.C. Then we took a 5 night cruise to the Bahamas, soaked up a ton of sunshine, relaxed on beaches, and ate amazing food. It was so nice to be waited on for 5 days.  Brooke is currently playing softball and running track. Bryce is spending a lot of time in the gym working on football and basketball.  I am working full time and also the assistant coach of our JV softball team.  I find keeping busy helps me keep my mind off of cancer.  I won't lie, many days my plate feels overloaded, but I am learning to balance and learning to let some other things go. Jeff is busy holding down the fort at home, he is usually in charge of dinner and making sure Brooke gets everywhere she needs to be. Lucky for him my softball season is much shorter than his football season. His duties at home will soon be changing as we shift gears in seasons.  I have figured out how to live with stage 4 cancer, I have learned what I can handle at this point, when I need a nap and when to say no, now if I could just settle the anxiety that comes along with my diagnosis that would be great. My next scan is in June, we hope to spend the summer celebrating stability, enjoying Michigan beaches, kayaking, and maybe checking another trip off my bucket list.

Peace and Hope,
Chris and family.

Here are a few pictures from our great trip!