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?

The Beacon and the Wreckage

This resonates with me. It begins to describe how I feel, almost 7 years into MBC. I almost feel healthier, happier and more whole than I did before cancer, but that is not quite accurate. Those particular words are not exactly right.

Healthier: This cannot be within a body with incurable stage 4 cancer, a body that is physically and mentally limited, a body plagued with digestive problems, fatigue and pain. Perhaps I mean that I am comfortable with this body I have. I like it. I may even love it. I marvel at its abilities, even when those are much more limited than before cancer. People my age seem so concerned about aging and I see aging as a wonderful privilege.

Happier: How can I be happier when there is gut-wrenching fear of dying young, before my kids are ready and without my fulfilling my biggest wish in life – to grow old alongside my husband? Surely I am not happier. Perhaps I mean more at peace, more comfortable in my own skin, more confident to practice self- compassion, much better at time management, much more skilled at setting priorities with my own time.

More Whole: How can this very broken body be more whole? Perhaps I mean that I know myself so much better than I did before cancer. I have experienced much trauma related to my cancer journey – chemotherapy, radiation, surgeries and so many scans. I had to quit working, throwing us into financial insecurity and uncertainty. Outside of cancer there have been so many problems. Surviving all this has made me stronger, like bones knitted together after a fracture. Knitting together fractured relationships makes them, in my opinion, stronger than they were before they broke – definitely built on a more solid foundation.

I started this cancer journey with the scary realization that I am in control of nothing – hence the title of the whole blog, “I am NOT in Control.” I have developed a closer relationship with God. I talk to God so much in the normal course of a day. I swear at God. What the eff, God? Seriously, God? God, give me the words. God help me put on my big-girl panties today. God, I just cannot. There is too much pain, anxiety and fear to say, smugly, that I am happier and healthier than I was 7 years ago. I see my cancer in the faces of my husband and our three children. I saw it in my mom. But, to use the selection from this poem, I am now learning to be both lighthouse and sinking ship, the beacon and the wreckage.

Cancerversary #6

July 24, 2025

Six Stars Tattoo for Six Years Living with Metastatic Breast Cancer

On July 10, 2019 I found a lump in my right breast. Seventeen days later, July 24, 2019, I was told that I had breast cancer that had already spread to my bones, liver and adrenal gland. This came after 9 years of annual mammograms that were “not positive for cancer.” My most recent was 9 months before I found the lump. In 2020, the breast cancer spread to my brain.

I have received radiation for the tumor on my adrenal gland and one in my shoulder bone. I received five rounds of SRS (radiation) to my brain. I have infusion treatments every three weeks and will for the remainder of my life. I have had three rounds of gamma knife to brain tumors and recently had laser ablation of the newest brain tumor – my 12th one.

Since my diagnosis I have learned that I have extremely dense breast tissue that makes it much harder to see breast cancer on a mammogram AND is a significant risk factor for developing breast cancer. A person with dense breast tissue has a 60% higher risk for developing breast cancer than a person without dense breast tissue.. How I wish I had known this before my diagnosis. I had never heard of breast density and didn’t know I should have been receiving additional screenings each year in addition to my mammogram.

Did you know that there are scarce resources dedicated to researching Metastatic Breast Cancer?

I am raising money for METAvivor because 100% of their funds go to researching Metastatic Breast Cancer – the only breast cancer that kills. I need research to find new treatments to extend my life.

This is a link to my fundraising page.

https://donate.metavivor.org/fundraiser/5554408

Poking my Head out from the Cave Again

July 24, 2025 will be the sixth anniversary of my Metastatic Breast Cancer diagnosis. July 10, 2019 was the day I found the lump. The days in between that and the horrible diagnosis are etched in my memory. July is a difficult month for me. I have not felt like blogging for a long time. This is what my body has been through so far:

Treatments: 102

Gamma Knife Procedure: 3

Brain Radiation SRS: 5 rounds

Adrenal Gland Radiation: 5 rounds

Shoulder Radiation: 1 round

Spine Surgery: 1

LITT to remove a brain tumor: 1

Brain MRIs: 17

Whole Body Bone Scans: 14

Chest/Ab/Pelvic CT Scans: 19

Echocardiograms: 9

Heart MRIs: 9

Breast MRI: 1

Complete Spinal MRI: 1

Thoracentesis to drain fluid from my lung: 2

Hospitalizations: three

This was a photo from treatment 102. Next Tuesday, July 22, will be #103. It has been a whole year since I had a new brain tumor – a record for me. Along with my infusions every 3 weeks, I take 2 oral chemo pills morning and night. They are not kind to my digestive system, but they are manageable, especially since it seems to be working. I am an ambassador for #LightUpMBC again. We raise money for Metavivor for metastatic breast cancer research. This is even more important now that the controlling political party has slashed billions from cancer research through the NIH with the support of every voter who helped to elect them. My fundraising page can be found here:

https://donate.metavivor.org/fundraiser/555408

I am grateful for those of you who have reached out to me while my blog was on hiatus. It means a lot to me. The painted rocks seen in photo at the top of this blog were a special gift from 3 people who know just how to add smiles to my day. Some of you even keep up with my treatment days (still every 3 weeks and still on Tuesdays). A little text or email to let me know you are thinking of me really brightens up those days. I am really tired of dealing with Stage IV cancer every day. Grief over that and missing my mom seep into all aspects of my life. Most days I still have the urge to pick up the phone and call Mom, to share something exciting or something that scares me. I carry her with me in my heart always. I appreciate any shares of this site, as I am still taking a huge step back from social media. You can also sign up to receive new blog posts via email.

I leave you with my new mantra: You don’t have to like it or want it or approve of it. Simply allow it to be there – because it already is.

I Hate Capecitabine So it Better Work

I am still battling Hand Foot Syndrome (HFS). My oncologist told me to take a week off Capecitabine and then restart at a lower dose. At the one week mark, my symptoms were still bad, so I was told to wait another week. That was Wednesday. My symptoms were still troubling but somewhat tolerable and I know I need this drug, so I started back. The HFS started becoming worse again Thursday evening. My toes really hurt today and I have another finger with a deep crack in it. I am determined to take it until next Wednesday (11/13) I have treatment 91 and the chemo infusion nurses will send my symptoms to my oncologist for review. But, of course, that will be the day I begin a glorious week OFF capecitabine. I am really struggling emotionally with the foot pain and not being able to walk for extended periods of time. Walking is so good for my physical and mental health and I miss it. I could not play the piano for church last week but should be able to get through it this Sunday. I’ve practiced most days this week and it is good to spend time thinking and praying through music.

December 2 will be a long day at Barnes. I have a brain MRI at 8 am and see my radiation oncologist for the preliminary results a couple hours later. It is wonderful that they do not make me wait long. Then I see my oncologist and have treatment 92. Dave and I will be at Barnes (main campus) from 7:30 am until around 4:00. So we will leave home around 3:30 am and get back home to the farm around 8:00 pm. We try to get things scheduled like this (in one long day) to save gas money and to avoid hotel expenses. It gets difficult, but driving up the lane as we get home is such an amazing feeling. For me, there is no place like home. In September I had my first clear brain scan since 2020. Here’s hoping for the second one in December.

Advocacy Alert: Metastatic Breast Cancer Access to Care Act

Urge Your Representative to Cosponsor the Metastatic Breast Cancer Access to Care Act The Metastatic Breast Cancer Access to Care Act would amend the Social Security Act to eliminate waiting periods for social security disability insurance benefits (SSDI) and Medicare coverage for eligible individuals with metastatic breast cancer. Under current law, a person with metastatic breast cancer must wait five months after applying for Social Security Disability benefits to begin receiving those payments. Also, that person must wait an additional 24 months after disability benefits begin before receiving Medicare insurance coverage. This delay creates obvious hardships for people with metastatic breast cancer as they struggle to pay medical expenses. This delay also ensures that many people with MBC are unable to collect the benefits they paid into the system because of their reduced lifespan, currently averaging 33 months after diagnosis.

This delay affected me personally and caused financial hardship. I had to live without a paycheck for 5 months before my disability began. I struggled to continue working my job to delay those five months for as long as I could. I had help from some friends and family members to help us get by those five months, but we still used up all our savings. I want to help those facing the same diagnosis to not also have to fear financial ruin. Please help me in this fight.

Go to this website: https://www.stopbreastcancer.org/what-we-do/policy/find-tools-to-take-action/#

You will be asked to fill in your address and zip code. From that info it will identify who your elected officials are in a new page. After you see this information, hit the back button to return to the first page and select the purple “Take Action” button. This will take you to a page that has form letters already written to your elected officials. You can modify the text if you want using the “edit messages” button on the left.

Things You Need to Know that I Wish I Had

Five years ago today on 7/17/2019 I had a diagnostic mammogram and an ultrasound of my right breast. This was ordered after I found a lump on 7/10/2019 and my primary care doctor confirmed my findings on 7/12/2019.

Make the effort to view the actual reports from the tests you have.

Many health care facilities will send you a letter or you may receive a phone call from your doctor’s office telling you that your tests were “just fine.” This is what we all want to hear so we typically do not take the time to go online to our medical charts to view the actual reported results. Review the actual report with your doctor and ask questions if you do not understand what it says. You must be your own heath advocate.

You must know your breast density.

On 10/11/2018 I had an annual mammogram at my local hospital. The radiology report indicates that I had multiple prior studies dating back to 8/13/2009.

FINDINGS: A moderate to large amount of heterogeneously dense tissue is again detected bilaterally which limits the sensitivity of the exam. There were no speculated masses. No suspicious microcalcifications. No evidence of architectural distortion. A few coarse calcifications are noted bilaterally. There were no significant changes.

IMPRESSION: No mammography evidence of malignancy. Recommended routine follow up. BIRADS Category II – Benign Findings.

Mammography reports were required to indicate breast density beginning 1/1/2019 – –horribly bad timing for me. This report mentions the breast density casually but did not assign a level to the density or indicate what should be done depending on the level of density. There is no way to know for sure, but my oncologist believes my cancer began at least as far back as 2017 given how widely it had spread when it was discovered. I was getting annual mammograms, but my breast tissue was far too dense for cancer to be detected on a mammogram. You must be your own health advocate.

You must know what to do if you have dense breast tissue.

The radiology report from my diagnostic mammogram showed “a vague density at about the 1 o’clock position.” This report, though, finally assigned a level to my breast density: “d – The breasts are extremely dense, which lowers the sensitivity of mammography.” BIRADS Category IV – Suspicious Abnormality.

The ultrasound report from that day found “a lobulated mass at the 1 o’clock position” that measures 2.4 cm in greatest diameter.

Two weeks later a breast MRI, the best scan available for detecting breast cancer, showed the reality: A 3.5 cm tumor in my right breast that had tentacles like a spider that reached clear through my right breast. A diagnostic mammogram only showed “a vague density.”

If your mammogram report indicates that you have heterogeneously dense or extremely dense breast tissue, you need further screening. A study from Myriad Genetics shows that 44% of women do not understand breast density and 63% of women do not know there is a connection between breast density and cancer risk. Until August 2019 I did not understand breast density and did not know there was a connection between breast density and cancer risk. Now I have Metatstic Breast Cancer (Stage IV) that has spread to my bones, liver, adrenal gland and brain. Breast cancer in early stages is treatable. My cancer is terminal. You must be your own heath advocate.

I spent some time being horribly angry and feeling betrayed by the health care system. I did everything I knew to do at the time, which was annual mammograms. The only way I can see my way through the anger is to passionately advocate for increased awareness of breast density and the increased risk of cancer associated with it AND to passionately advocate for more research to find a cure for Metastatic Breast Cancer, the only kind of breast cancer that kills and the cancer that kills 114 people every single day.

I am an ambassador for 2 organizations: My Density Matters and LightUpMBC. Go to https://mydensitymatters.org to learn about breast density and the screening necessary. Please consider donating to my fundraising page for LightUpMBC: https://donate.metavivor.org/fundraiser/5554408. All proceeds go to funding MBC research grants through Metavivor.

If I Could Turn Back Time

July is the month of hard anniversaries. It is a month I wish I could just skip. But I cannot. Instead, I plan to find some purpose in my journey by educating you so you and the people you love do not find yourself walking in my Metastatic Breast Cancer shoes.

July 9, 2019 was the last day I experienced without the fear of cancer. Now we know that I already had breast cancer that had spread to my bones, liver and adrenal gland. But on that day, I was blissfully unaware. I ache for that lost happiness. I find relief in sharing my story so that other people will do the following: perform monthly breast self exams, get annual mammograms beginning no later than age 40 (earlier if you are high risk),know your breast density, know what screenings you need if you have dense breast tissue, know what Metastatic Breast Cancer is and why we need more research done to cure the only breast cancer that kills.

I am an Ambassador for #LightUpMBC. I am working to secure buildings to be lit in the MBC colors (teal, green, pink) on October 13, 2024 – National Metastatic Breast Cancer Day. I am in contact with State Farm Center on the campus of University of Illinois, my alma mater. If you have other ideas for buildings and landmarks with color changing LED lighting, please let me know. All proceeds from the #LightUpMBC campaign go to Metavivor to fund research grants. Your donation might be the one that funds research that finds a cure for me before time runs out.

https://donate.metavivor.org/fundraiser/5554408