My train was delayed so I sat in the hotel lobby and read for several hours. Then my digestive system decided it needed to be utterly empty. All of it. Empty. It wasn’t pretty. I only packed for one night. I threw away several articles of clothing in the lobby bathroom. I only brought the shoes I was wearing. I don’t recall feeling this embarrassed and out of control and ugly.
I am on the train and hoping no one opts to sit with me because they will not appreciate being close to me. Dave will meet me at the train station with clothes and shoes.
The absolutely only saving grace of this afternoon was my radiation oncologist calling me to say my brain MRI shows I am stable and they are going to move my scans to every 4 months now since it has been 32 months since I had a new brain tumor.
I don’t feel good sharing some of these days with all of you, but someone needs to advocate for those of us living with metastatic breast cancer. I am alive, but definitely at a cost to my finances, my dignity, and my mental health.
I had a bit of my mom’s handwriting inked a few weeks ago along with the number of days I had my mom with me. I feel so alone today in my struggles, but I know she is with me always. I am so looking forward to seeing Dave, getting cleaned up, and getting home to Madi and Milli. Metastatic breast cancer is devastating, even when scans are stable.
The train station in Bloomington was very quiet Monday morning. Hope to renew my license to live for another 3 months. Scan done and enjoying some relaxation before it’s time to head to the train station.
Today was chemo #125 and the start of a 4-week medical marathon where I go to. Barnes once a week for 4 weeks. Next week I go back to St Louis to see my cardiac oncologist. The following week I have a brain MRI to see if my treatment is still working. The following week I have chemo #126.
The week after that is Thanksgiving and I will be thankful I don’t have to go to Barnes that week. We may just eat out for Thanksgiving this year.
Turned into a Full RainbowLook how bright one end is!
There’s been a lot going on in life other than metastatic breast cancer. My family could use some extra prayers.
It was a crisp, sunny fall day at Settler’s Park in Plainfield, IL, the site of the Chicagoland Be a Hero Fun Run. So many volunteers made this event successful and fun. Kids enjoyed free events like build a bear (with an MBC shirt), face painting, bubbles, bags games and more.
Heidi’s Hope had a team of 9 walkers today, plus 7 more who had planned to join me on the original date in September but couldn’t attend today. So many of you donated to my team, either on the Be a Hero page or my year-round fundraising page. It all goes to the same place: METAvivor. METAvivor is the ONLY organization dedicated solely to raising money for researching a cure for metastatic breast cancer.
I cannot begin to thank Heather, Suzi, Lila, Dave, Ross, Darrin, and Joy for joining me today. Special thanks also go to Doug, Sheila, Patti, Barb, Susan, Haley and Haley who planned to walk with me in September but horrible rain storms caused the event to be postponed.
After walking a mile around the park, there was a brief ceremony and raffle prizes. They honored those present who have MBC and we had a moment of silence for someone who passed this summer. She always had a team of family with her at the walk and they came in force today to help us keep working on raising money for a cure.
Dave, Ross & Darrin walked with me. My daughter was signed up for the original date of the event but could not attend today. We texted frequently, though. 🩷
Maureen, Mary and Lisa are the amazing team that organized this event. You ladies are simply amazing! And to April, who started this whole thing off 7 years ago, I’m praying hard for you. I sure missed seeing you today. 💙🩷💚
Under current law, if a person with MBC is found to be disabled for the purposes of Medicare and Social Security Disability Insurance (SSDI), they must wait 24 months to enroll in Medicare after waiting 5 months to receive SSDI. The life expectancy for someone with MBC is about 36 months after diagnosis. This means that most people with MBC never receive SSDI and Medicare benefits they are eligible for because they do not live out the waiting period.
The Metastatic Breast Cancer Access to Care Act (House Resolution 2048/Senate Bill 663) fast tracks these benefits.
My Story
I was diagnosed with MBC in July 2019. The company I worked for didn’t have enough employees to require them to offer FMLA (Family & Medical Leave Act). I had 3 weeks of vacation and 5 personal days of paid time off. I had already used some of it for the year. I was the controller of the company – a department of one. I handled accounting, cash flow, IT, OSHA reporting and Human Resources for the entire company. The day I was diagnosed with MBC, I told my mom and my children about the diagnosis and then went back to work – because there were things regarding wire transfers that had to be done that day and I had not expected to be gone from work that long. The day after I was diagnosed I worked a long day preparing a contingency plan for my position at the company – for a widely unknown future. They allowed me to get a laptop and a secure connection to the server. There were daily things I had to do at that point, and I did them. I processed payroll from a hotel room 3 hours after surgery to install my chemo port. I reclined in a chemo pod bed and worked on financial statements needed for the upcoming corporate annual meeting. I paid for a hot spot on my cell phone plan so I would always have access to the internet. When it was sketchy, Dave and I would find a fast food chain with good, free wifi if we were on the road to or from St Louis. I kept going because I had to. I was the main breadwinner for our family. We had one child in high school and two in college. Do the math.
In July 2021, 2 years in to my diagnosis, I filed for SSDI. The board of directors decided they wanted a controller who would be “sitting in the chair” at the office instead of sometimes working remotely. At that point I had dealt with 9 brain tumors, adrenal gland radiation, shoulder radiation, 2 rounds of gamma knife (on brain tumors), and almost 50 rounds of chemo infusions. I had long term insurance disability insurance through my company. Short term disability insurance was not available to me. I had a 5 month waiting period for the SSDI and a 6 month waiting period for the long term disability insurance – where I could earn absolutely no income. A cousin and a couple best friends gifted us money to help us get through that waiting period. We had also tried to save up what we could and cut expenses.
It was hard.
My disability income is about 60% of my income when I filed for disability. I am extremely grateful for that – but it is difficult to manage with high medical costs. I hit my annual out of pocket maximum on our health insurance policy the first time I get an infusion in January. The cash cost of one infusion is about $40,000. I’ve had 124. There’s that math again. Even with insurance, brain insurance and spine insurance are costly.
I am not asking for money. Dave and I know how to live on a budget. We are very comfortable and happy with our life together.
But consider that I am not supposed to be alive today. The life expectancy is 36 months with MBC but decreases to 1.5 years after they find brain mets. I blew past that in November of 2022. I don’t know why. I have lost so many friends in my online support groups. The survivor guilt is always present. So, even though the MBC Access to Care Act’s passage is too late to help me, I am still working to get it passed for others. That is loving my neighbors.
Please consider contacting your Congressional Representative and Senators to ask them to support HR 2048/SB 663.
This link helps you contact your elected officials.
