Category: Uncategorized

In Conclusion

Today is the last day of Breast Cancer Awareness Month. Please don’t let MBC slip from your mind. This year an estimated 115 people in the United States will be killed by MBC every day.

From Metavivor:

“With the impending flip of the calendar, the “Breast Cancer Awareness” campaigns will retreat back to their pink shadows for the next 11 months – but we can’t ignore stage IV for even a minute. It is estimated that more than 42,000 people will die from MBC in 2024 in the U.S. alone, and these heartbreaking losses won’t stop until we collectively aim more than the current 5% of all breast cancer research funding at the only fatal form of the disease.”

I am so thankful for all the support I received from Dave and all of you for my Light Up MBC fundraising and awareness. I can still hardly believe my beloved Assembly Hall (I mean, State Farm Center) was lit in the MBC colors of green, teal and pink for National Metastatic Breast Cancer Awareness Day, October 13.

I participated in the Be a Hero Fun Run in Plainfield, IL for Light Up MBC on October 12. My cousin, Suzi, drove me up and walked with me. My dear friend Patti also drove up and joined us. It was a beautiful day and I got to see my MBC friends April and Lisa and meet some new friends.

My dear friend, Greg Niewold, of Power Planter introduced me to Jerry and Jenny Simpson of Creekside Nursery. We made a video that has 24K views on You Tube to spread awareness of MBC, to promote the Light Up MBC Campaign, to promote breast density awareness (My Density Matters), and to announce a Creekside Nursery Signature Event that raised thousands of dollars for Light Up MBC in their live auction. Greg has done so much to support me since my diagnosis and help me spread awareness. He is an amazing human.

Greg hosted a Live Watch Party for the Light Up MBC event so people could watch the show and see me tell my story (with Dave by my side) in front of State Farm Center lit in MBC colors. I don’t know the details of the party, as I was busy with the live filming. It was a crazy night, as the lighting technician was delayed. The green, teal and pink lights did not happen until minutes before I went live. I’ve heard from many of you who watched it and my phone was pinging with texts. You all made me feel so loved. Dave and I stayed a long time after the event was over, just soaking it all in.

I encourage you to follow Metavivor, Light Up MBC, and My Density Matters on social media and I thank you for following me on my mission to raise money for metastatic breast cancer research. The Light Up MBC campaign runs through December 31. My fundraising page will remain active until then. This research is needed to save lives, including my own.

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

Know your breast density and why it matters. Perform monthly self exams. Get annual mammograms. Then get additional screening if you have extremely dense breast tissue. Don’t let my story become your story.

Thank you so much for your love and support. It means the world to me and helps me get through some really difficult days.

Labs & Music

Madi’s turn to tour the town

We do not have an attached garage so I park close to the house when I bring groceries home, unload them, and then put the car in the garage. In my world, this means that when I go back out to put the car away, I take one of the dogs for a short drive around Elliott (pop. 300) with the windows partially rolled down. Doesn’t matter the weather or temps or time of day.

It’s a quiet day here on the farm except for the blustery winds outside. The chemo side effects continue to be especially bothersome. The Hand Foot Syndrome (HFS) was improving but now seems stalled. I was supposed to start back on Capecitabine today but my oncologist wants me to wait until the HFS symptoms are tolerable before I do. She assured me today (via My Chart message) that it will get better. I have to trust her; look where she has gotten me this far. I still cannot play the piano with my hands swollen and cracked and walking is a chore with my toes so red and swollen. I’ve been throwing everything I can at the HFS but it really comes down to time and patience.

In the past few months I have developed some other troubling side effects, a bit personal in nature. I found a medical professional about 30 minutes from home who promises she can take care of these things, too. It will take time and patience.

There are other troubles in my life that have nothing to do with cancer. They are out of my control, so I need to learn radical acceptance. That will take time and patience.

I sense a theme.

So today I am in my Llama Lounge (former office) listening to Christmas music. I do that on bad days. I think through music. I am calmed through music. I pray through music. I heal through music. And my 2 labs.

Labs and music, and time and patience. Bring it on.

Madi & Indie

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. 

A New Acronym

Today is treatment 90. I had an echocardiogram this morning. I receive them regularly because one of my infusion drugs, Herceptin, is know to cause heart damage.

There was a significant gap in scheduling between the scan and going to the cancer center so we opted to wait in the car with the windows rolled down. It’s truly a gorgeous day here in St Louis.

I am experiencing a “new acronym” now – HSF. Cleveland Clinic describes it this way: “Hand-foot syndrome (HFS), or palmar-plantar erythrodysesthesia, is a common side effect of some types of  chemotherapy. Chemotherapy is a common cancer  treatment. HFS is a skin reaction that you may experience as redness or swelling on the palms of your hands or the soles of your feet.”

Looking back, this has been coming on for a few weeks, but it made its presence known with a bang on Monday of this week. The palms of my hands and the soles of my feet (along with the toes) are bright red as if they have been burned, and they feel like they have been burned, too. My fingers are swollen, especially the pads. If anything merely brushes by my toes, I am in excruciating pain. Daily living activities have been extremely difficult the last few days. I am wearing thick socks and slathering my feet and toes with unscented moisturizer. Every step down is bad.

My oncologist told me to take a week off the capecitabine. When I start again, it will be at a lower dosage. She already lowered it due to the awful digestive issues so now we are stepping down another notch. It has to happen because I cannot function will the HFS this bad. Hopefully it will lessen enough for me to get used to this new normal.

I am tired of new normals.

I’m also scared of lowering the dosage so much that my breast cancer will form another brain tumor.

I am tired of brain tumors.

I am tired of metastatic breast cancer.

Light Up MBC Live 2024

This is a link to a recording of our show. I have so much to say about the events of this past weekend, but I am too tired to string many words together well.

It is a 2 hour video. My story comes around the 1:30 mark. I urge you to watch the whole show. I’ve heard some comment that it is too sad to watch. The point of our stories is to show what it is really like to live with MBC, yet to make people aware that we are just like the rest of you – trying to live full lives. You will learn so much about MBC and see all the amazing research.

There are so many new treatments on the horizon. It makes me wonder how much more there would be if more than 2% of all breast cancer research dollars was focused on metastatic breast cancer? Even if we could tip the scale slightly and get 10%, I cannot fathom all the marvelous things that could be extending our lives and making them better.

I’ll end with this: You’ve heard me say or write that around 115 people in our country die every single day from metastatic breast cancer. Did you know that number has held steady for well over a decade? That means the equivalent of a small jetliner full of people die every day from a disease and we are not making any progress on stopping it.

I have so many people to thank for their donations and support. I will get to that soon. For now, please know that your encouragement helps me on some of my darker days. I was so moved by seeing State Farm Center lit in pink, teal and green. I told Dave I wanted to spend the night down there so I could keep watching it. 🩷💚💙

https://www.youtube.com/live/RQQVtZIpFGs?si=FimkefGYPodD5CBu

But here’s the truth.

National Metastatic Breast Cancer 2024 is here. I’ve got a lot going on today. The first and most important thing I will do today is church where I am playing piano and also delivering the message. It’s based on Job 23 and I will share more on that another day.

I want to show you what metastatic breast is.

Last photo of us before diagnosis
Preparing for my 2nd round of gamma knife

Today, 117 people in this country will die from metastatic breast cancer.

The five year survival rate stands an 22%. It’s been five years, 2 months, 20 days for me.

Despite the dire facts surrounding the disease, for each $1 million spent on breast cancer research, only about $20,000 (2%) goes toward metastatic research.  A number of leading metastasis researchers believe the stage IV patient situation could be significantly improved if the research were more fairly funded, but at 2% this will not happen.

We need research dollars.

I had never heard of metastatic breast cancer until I was diagnosed. We need awareness.

How you can help

On Sunday night, I have 2 minutes to share my story on #LightUpMBC Live. It’s only 2 minutes. The best way to support me is to watch the event on your own or with a group of people. If you are local, my friends at Power Planter are hosting a watch party. I will share my 2 minutes story around or after 7:45 pm. You will also see and my friends from Creekside Nursery and Power Planter in a 1 minute video promoting our auction item.

We want everyone to understand what metastatic breast cancer is and that less than 5% of breast cancer research dollars are dedicated to metastatic breast cancer. I also hope you share my story or other information about breast density and why it matters so much.

You can direct people to My Density Matters. Their website is full of information on dense breast tissue. That organization works hard to get the information out and to influence the legislation we need. Recently they met with a large class of medical students so that all those future doctors will know what their patients with dense breast tissue need.

https://mydensitymatters.org/

Check out the LightUpMBC auction site that is already live. You will see the Creekside Nursery Signature Event listed.

https://e.givesmart.com/events/txu/

Please consider donating to LightUpMBC on my fundraising site. All proceeds go to Metavivor to fund research grants for MBC.

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

How to watch #LightUpMBC Live

TUNE IN TO #LIghtUpMBC Live On October 13th at 8 p.m. ET 

HERE’S HOW TO WATCH (as we stream live from HILTON SHORT HILLS)

To  learn more, please visit www.METAvivor.org/LightUpMBC and follow @lightupmbc social channels

IMPORTANT

Your support is overwhelming and I am so grateful for all of you. I am also still a person dealing with metastatic breast cancer and I’ve been pretty fatigued lately. I’m trying to preserve enough energy to make it through Sunday and then I have some days of rest planned. It still hurts to tell my story, even though I’ve done it so much over the last 5 years. And I will definitely keep doing it as long as I can so that MBC gets the research dollars and so all women with dense breast tissue get the scans they need to detect cancer at an early stage when it is still curable.

Thank you all so, so much for helping me do this. It means the world to me.

89

Today is my 89th treatment. Science is so cool.

I live over 3 hours from my cancer center, but if you have one close to you, please consider donating your time and talents.

There is a library with donated books and magazines. There are carts with art supplies people can use while they are stuck in the chemo pod. Groups knit hats and sew port pillows for the seat belt. Often an organization donates chapstick or moisturizer.

Light Up MBC has a live auction site that opened today. One of the items is special to me. It is a Signature Creekside Nursery Experience. It includes 2 tickets to Creekside Nursery’s very special annual event. Each ticket sells for $1000 and the auction package includes 2 tickets. Power Planter created an exclusive 32” pink auger, signed by Jenny Simpson of Creekside Nursery. White Rose Manor, an absolutely gorgeous bed and breakfast near the nursery, donated a two night stay for the package. So you can stay at the White Rose Manor while you are enjoying the Signature Creekside Experience.

Dave and I visited Creekside Nursery in September with our friend, Greg Niewold, from Power Planter. We recorded some videos. Creekside is utterly gorgeous. Check out their website site to see!

https://e.givesmart.com/events/txu/

Please check out the auction. All proceeds benefit Light Up MBC and Metavivor.