Santa Heinemann Heinemama Health Journey

First post: Jul 11, 2021 Latest post: Jul 11, 2021
Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. Here is my story...

In May of 2011 just 2 months after Westley was born, I felt a lump in my abdomen. I saw my doctor who scheduled a surgery to remove what appeared to be a large ovarian cyst. The cyst was cancer. I was 32, a newlywed, and a new mom. I was blindsided. That year consisted of several diagnositc procedures including abdominal surgery.  It also included an elimination diet which led to diet and lifestyle changes. 

For the next 9 years I went to several follow up appointments to monitor my body for cancer. No other cancer was found during that time.

Enter 2020. This was a tough year for many people. Learning how to live in a worldwide pandemic was very challenging. In April of 2020, right after Easter, I started experiencing difficulty in coordination and mobility on my left side. An MRI showed a golf ball sized tumor in my right frontal lobe. I had a successful craniotomy within the week and an easy recovery. A CT scan showed a few spots of cancer in some lymph nodes in my chest and neck area and my right lung. We scheduled chemotherapy to start right after brain radiation was complete. Chemotherapy was not going well due to the allergic reactions I was experiencing. We stopped the 8 cycle program after 6 cycles. The cancer continued to cause physical challenges for me and started to progress. After several clean brain MRI scans I started to get reports showing 20 plus tiny spots all over my brain. I had 3 more rounds of stereotactic radiation surgery to remove all those spots. 

I started Immunotherapy in January 20201. After 4 months my scans showed mixed results which was disappointing. I had a simple surgery to remove a tumor that had developed on my left side near my rib cage. After sending it to a lab for specific chemo sensitivity testing I started a new chemotherapy on June 15th. I continue to take immunotherapy because it seems to be helping keep the cancer under control in my brain. The new chemotherapy is very tolerable and I am not having any allergic reactions to it.  I feel like I am on the right path to recovery. I know this new chemotherapy is already working although this is a slow and long process. 

My daily struggles include getting to and from my many appointments throughout each week (I'm currently not comfortable driving), coordinating childcare each day, food and meal planning/prep/cooking, and just doing the household chores and management that I would normally do if I wasn't dealing with so many physical challenges. I do experience pain and physical limitations daily but I also feel like I am getting stronger everyday.

I am so grateful for all the love, support, and prayers that are being poured out over me and my family. Thank you for stopping by and plugging in to help our family out. Your contribution is greatly appreciated and necessary to this delicate, chaotic, and frequently overwhelming process.

In love & gratitude,
Santa Heinemann