National Metastatic Breast Cancer Day

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.

https://www.votervoice.net/BroadcastLinks/ojEFPh3ze4qaC4HCQk1aZg

Reality Bites

I’ve been struggling this week. Treatment 122 on Tuesday didn’t help, although it has been kinder than usual. Fatigue and diarrhea are the big physical issues of the week. The company that holds my long term disability insurance policy is requiring me to re-qualify for the claim. This is the second time I have had to do this. Completing all those forms and forwarding some of the forms to my oncology team to complete really put me in a mental tail-spin. There is no logical fear that they will not re-certify me. I still very much have metastatic breast cancer and am in active treatment. They require complete access to my medical records, which I understand but it still bothers me. I still very much qualify for SSDI, a requirement for long term disability insurance claims. Requiring me to describe all this on forms brings a lot of feelings back up to the surface – feelings I work hard to suppress. They asked me what I do with my time. Ouch.

Taking care of my health and completing daily living activities is a full time job for me. This is not the life I imagined at 57. My peers are pouring themselves into their careers and earning money and saving for retirement. They have travel plans. I stretch my monthly disability check and take a tote bag wherever I go in case I vomit or crap my pants. I don’t have any personal beef with the people who greet me with, “You look so good!” But in my head I am screaming, “I vomited in the car on the way.” or “I have not had any food or drink in 6 hours so it would be safe for me to attend.” So why in the world do I feel the need to justify what I do with my time? I guess my heart is sometimes louder than my brain. My heart had other ideas for this life.

So what have I been doing with my time?

I packed up my infamous tote bag and went to the Illinois State Fair last week. I did use some emesis bags but also made a new friend in Willie the Llama.

I filled tens of pages in my sketch book.

I took Madi and Milli for some car rides to run errands.

I choose to continue to live while I’m alive. Where is the box for that on the form?

Have you noticed?

The Missouri Botanical Garden has a large presence at Siteman Cancer Center. They send volunteers to help patients in the chemo pods make flower arrangements or floral cards, as examples. Yesterday I saw this flyer in the waiting area from the Therapeutic Horticulture Team at the Missouri Botanical Garden:

It reads:

The Benefit of Noticing

A small amount of time spent noticing nature can change the course of your day.

Take a moment to observe the plants outside these windows.

As the seasons change, begin to see signs of what is to come.

Notice, are there buds forming on the plants and trees?

Are the leaves young and tender green?

Are there any nests or wildlife that you can see?

Is the wind causing movement or does everything seem still? How does it all make you feel?

Noticing is the process of actively selecting and interpreting relevant information from the broader environment. This practice helps us learn in all areas of life, but nature is a great place to start. Slow down. Use your senses intentionally. What do you see, hear, feel, taste and smell right where you are at in this moment? Be in this moment. That is mindfulness. When my thoughts are too messy to find a starting point in my journaling, I turn to this quick journal exercise. Write down 10 things you see, hear, feel, taste or smell right now. It is amazing how this simple exercise grounds me and clears my mind for deeper thought. Sometimes I do this as a mental exercise when I am away from my journal and spiraling with anxiety. It reminds me to be present in all I do. When I walk Madi I do not take any listening devices. I take my phone for emergencies (like when I faceplant in a road ditch) and to snap occasional photos. Otherwise I focus on noticing things on our walks – vegetation, sounds of birds and squirrels, the smell of cut grass or freshly tilled earth, and Madi’s cute little butt wiggle when she is shoulder-deep in a culvert. I love slow motorcycle rides when Dave and I can tell what is pollenating in a field from the scent as we drive by. In the fall we can smell a backyard wood fire pit from a mile away.

I am blessed with friends who help me notice nature, like Kris, who can make me think moss is utterly beautiful, and like Barb, who takes gorgeous photographs of things I walk by all the time without noticing. I have started snapping photos of things I notice so I can remember them later. I scroll through those photos on my bad days to remind myself of all the blessings around me. How lucky I am!

Mindfulness

Today is one day after treatment. I had a metastatic cancer support group zoom mid-morning and then spent some time in my Llama Lounge – reading, reflecting and writing. Several loved ones checked in to see how I am, via face time, video chat and text. It is so good to feel loved. Dave made me one of my favorites – black bean burgers. He is an amazing cook and makes food that is appetizing and healthy for me. The false spring continues so Madi and I took a walk today. On our walks I don’t wear any listening devices. I just want to be present in the moment with Madi and notice everything around us. She is a great teacher in this. She loves to go shoulder-deep in culverts. Sometimes she pauses her movement to just sniff the air. She frequently looks back to check in on me. Today is windy so I enjoyed watching her ears flap in the breeze. Being present in the moment is so refreshing and healing. It stops the racing mind of anxiety and a list of shoulds. It grounds me to all that IS instead of worrying about what WAS and what WILL BE.

When we reach our long gravel lane, I turn her loose to run home. Today she saw Dave on a tractor in the yard so there was extra speed in her strides.

When my slower steps reach home, she knows I will refresh the bucket of water at the hydrant. She prefers this to the filtered water inside the house!

Today is Ash Wednesday. I am re-reading “Wild Hope” by Gayle Boss that my pastor recommended. During Advent I enjoyed “All Creation Waits,” another book by the same author. I highly recommend both. I try to build inner strength through the practice of mindfulness. I think of mindfulness as radical acceptance – being aware of what IS and being open to that instead of letting my mind race to what SHOULD or COULD be. Madi has no idea she is my mindfulness guru.

You don’t really want to know.

How are you?

It’s a simple conversation starter people use when they really don’t want to know.

I’m not making resolutions. They don’t usually work anyway but I also try to take life one step at time these days, trying to do the next thing and the next thing. I’ve been in a real funk lately. There are many contributing factors: short daylight hours, winter cold, the anniversary of my mom’s death, Christmas without my mom, rotator cuff issues, the return of hand foot syndrome that made walking painful again, fatigue, nausea, explosive diarrhea, a nation in turmoil. I have absolutely earned the right to be in a funk. I made a point to attend a Siteman Metastatic Cancer Support Group via zoom this week. It meets weekly but I have not forced myself out of bed in the morning to participate in several weeks. I am so glad I did. They asked for an update and I said, “Not good…no I’m fine…wait… I am not fine.” What a relief to say that aloud. In this group, no one’s eyes glazed over as I continued. No one tried to convince me that I really should be happy instead. No one tried to tell me how to fix it. No one changed the subject. They know I have the tools to get myself into a better mindset and that I eventually will, just like all of them. But for now, they let me wallow in it. It felt so good to say it and to say it to people who truly understand. No one said, “Well. We all are going to die someday.” I really hate it when people without a terminal illness say that to me.

I am also not a fan of well-intentioned people who see me and tell me I look so good that they would never know I have cancer. Just what does cancer look like? On my bad days, you don’t get to see me. You don’t see me suddenly have explosive diarrhea when I’m just watching tv. You don’t see me suddenly throw up as I am driving down the road. You don’t see that I carry a bag with extra clothes and baby wipes and ziplock bags whenever I leave home. You don’t see the fatigue. You don’t see the pain. You aren’t there when I get my port accessed with the huge needle. You aren’t there as I swallow chemo pills morning and night, knowing that in the next hour nausea will hit. You aren’t there to see me inside the clanging MRI machine. You aren’t in the exam room waiting for the latest test results. You don’t see my heart break as I wonder if this is my last “whatever” (Christmas, birthday, etc). When you talk about your job you don’t see my heart twist because it was not my life goal to be on SSDI at age 56 because I am completely disabled. When you speak of retirement dreams, I die a little inside realizing the chance of me living to age 65 is slim and, if I do, I will have no savings because I cannot work and our medical bills are large. Dave sees all of me, the good and the bad. He is there for all of it. Our children are also there in the trenches with me. My lab, Madi, also gets the real me. She listens attentively, never says the wrong thing, and loves me even on my most unlovable days. We should all try to be more like her.

I get it. It is awkward as hell talking to someone like me. You don’t want to say the wrong thing so you avoid me. It is probably a little scary being around me. If this could happen to me, it could happen to you, too. The dark sense of humor I’ve developed can be a bit too much for people. But I love random check-ins. I love funny memes, especially involving black labs and Diet Coke. (Speaking of that, someone sent me an adorable Diet Coke hoodie from Etsy. Whoever you are, thank you. I love it!) I’m not one to talk on the phone but I love to text, and video messaging on the Marco Polo app is fun. I love snail mail. I love to talk about my dog, my mom, my family, my favorite podcasts and true crime documentaries. And don’t forget Taylor Swift. It is hard for me to schedule things in advance since I don’t know how I will be feeling that day. I also don’t plan very many things away from home because of the cancer side effects unless it is with someone I’m willing to use that damned just-in-case bag around.

The next time you ask me how I’m doing, I’ll probably just say, “fine.” But now you know the rest of the story.

Living on the Fringe

My Christmas Cactus must know that I need a little Christmas, right this very minute. She is blooming full force. She does her spring and summer on the oasis. I just try to keep her going until she can go back outside next spring. I guess I am just trying to keep me going until, well, I don’t know that answer. I feel that I am in the midst of a challenging period of growth. Those are always tough until I come out better on the other side.

I have always felt like I was on the fringe of society – not an outsider, but certainly not an insider. I had friends at school but that did not really translate to people to hang out with after school and weekends. Same at college. Same at every workplace. Oh, I can point to reasons beyond the obvious social awkwardness. I have always needed quiet to process and sort life. That is difficult for some to understand. I enjoy solitary hobbies like playing piano and organ. Yes – I can play in front of many, but most time is spent practicing alone, my favorite kind of playing. I was always surprised to hear when most co-workers went to an evening or weekend outing of which I was unaware. At my last job at the co-op, the other 5 people who worked in the main office with me would order lunch and never let me know. But, to be honest, I never felt deliberately excluded. I felt more like an after thought. I worked hard at work so I could get home to my family earlier in the evening. I also am really bad at reading people. I always assume the best in people until they show me otherwise, but then am shocked when they do. The election reminded me of my place in the fringe. While it stings, I needed the reminder that not everyone has good intentions toward me, my children, and people I love.

I have done a lot of advocacy work since I was diagnosed, both for metastatic breast cancer and for breast density. Advocacy requires many contacts and lot of social media. It is also work. Social media is not good for me. I am an empath so I take on more people and causes to care about and lack the ability to scroll past loud, angry social media behavior. I think of social media like the scene from the movie, “The Wizard of Oz,” when the curtain is pulled back to reveal that the Great and Powerful Oz is really just a tiny man working an effects machine. Social media gives us a false sense of security that we can say anything without consequences and we don’t have the opportunity to “read the room” to see if our true message is being received. We see examples of loud, threatening behavior on social media most days. Some of you handle it so well and I admire those who can debate their position in a calm, straightforward manner. That used to be me. That is not me anymore. Five years plus of a terminal illness, years of caregiving for my parents, the pandemic, the divisive nature of our society and some serious illnesses in my family besides my cancer has rendered me unable to handle social media. For that reason I am giving up my advocacy work and making my circle smaller. I am surrounding myself with the people I know for sure have my best interests at heart. Here, I hope to find some peace.

The HFS (Hand Foot Syndrome) is intolerable. I stopped capecitabine again but am still waiting for the pain to subside. Living with pain every moment, day after day, is exhausting. I am afraid that I am not going to be able to stay on this line of treatment.

Other channels of peace

My “inside oasis” is either at my piano or in my Llama Lounge (my former office for work). This is where I write, zoom people, draw, sew, and scrapbook. Two very special little girls provide me artwork, along with the painting my daughter made for me a few years ago.

Here are some photos of the Veterans Memorial in Elliott, Illinois. My dad was an Air Force Veteran and we used his memorial money to place a bench here and to fund some improvements to the memorial. Other than his time in the Air Force, my dad spent his life on the farm in Elliott. I love spending some quiet time here at the memorial when I want to think about him.

I can also count on my 2 black labs for providing stress relief. This is what Madi does when she wants her tummy scratched.

“Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid. “

John 14:27