This poem fell into my life exactly when I needed it. It is by Donna Ashworth, from her book, “Growing Brave.”

This prayer fell into my life exactly when I needed it. The author is Saint Jeanne Jugan.

Dave & I left home at 4:30 am. I had neck down scans today followed by a visit with my oncologist and finally treatment #88. Scans show the cancer is still controlled neck down. I am experiencing medical burnout and asked to push the next neck down scans to 6 months instead of 3. To quote Dave, “She is tired of being probed.”

In 5 years:

Treatments – 88

Gamma Knife rounds – 3

Radiation to adrenal gland – 5 rounds

Radiation to left shoulder – 1 round

Breast MRI – 1

Spine MRI – 3

Heart MRI – 9

Echocardiogram – 7

Brain MRI – 18

Whole Body Bone Scans – 14

Chest/Ab/Pelvic CT – 19

Bone Biopsies – 2

Removal of cyst from my spine

Brain surgery to remove tumor #12

Radiation to brain – 5 rounds

I’m taking a break from capecitabine, one of the new chemo pills that makes me so terribly sick. When I start again, I will try to lower the dose yet again. I need it, but I also need to have a decent quality of life. It seems to be a fine line to balance when dealing with metastatic breast cancer.

I’ve got some busy weeks ahead and I need a little more energy to get through them.

Saturday, October 12 is the Chicagoland Be a Hero Fun Run to raise money for Metavivor.

https://raceroster.com/events/2024/91641/chicagoland-be-a-hero-fun-run

Sunday, October 13 is National Metastatic Breast Cancer Day. I’m advocating with LightUpMBC to raise money for Metavivor. I will share my story on the live, virtual broadcast at 7 pm. I hope you tune in to watch.

Here is my fundraising link:

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

Beginning October 14, I’m clearing my calendar for a break. Indie, Madi and I will be on my oasis doing a whole lot of nothing.

I had a brain MRI at Barnes early this morning. This was the first one since my brain surgery in April to remove brain tumor #12 followed by radiation in May. It was also my first brain scan since I switched to my second line of treatment. It was my 18th brain MRI. That is 18 brain MRIs since November 2021.

My last clear brain MRI was in February 2022 —- until today. 🩷💚🩵

It has been an especially difficult year for me physically. The side effects of the new line of treatment are rough. The goal of switching was to find one that crosses the blood brain barrier and it seems we have succeeded for now. I will get brain MRI #19 in 3 months.

October is Breast Cancer Awareness Month and we will be surrounded by pink wherever we turn. Did you know that less than 5% of the money donated to breast cancer causes goes to researching metastatic breast cancer? October 13 is National Metastatic Breast Cancer Day. Our ribbon is green, teal and pink to highlight the uniqueness of the disease and show its commonality with other stage 4 cancers. In the past we have sold Heidi’s Hope boxes to raise money and awareness. I have opted to pursue a different path this fall and I am hoping you will help me spread this information.

First, I am working with #LightUpMBC. All proceeds go to Metavivor for researching treatments for metastatic breast cancer. I have set a goal to raise $3000 dollars this year. Here is a link to my fundraising page:  https://donate.metavivor.org/fundraiser/5554408

Second, I will be participating in the Be a Hero Fun Run on October 12, 2024 in Plainfield, IL. This is part of the #LightUpMBC campaign so all proceeds go to Metavivor. I would love to have you join me. This is a fun event so there is no set distance and everyone generally walks. Here is a link for more information: https://raceroster.com/events/2024/91641/chicagoland-be-a-hero-fun-run

Third, I will be part of the #LIGHTUPMBC LIVE 2024 event on Sunday, October 13 at 7:00 PM CST. You can tune in on YouTube, Facebook Live or LiveOne for the one hour event of inspiring MBC stories at illuminated landmarks with special guests and musical performances to raise funds for metastatic breast cancer research to benefit Metavivor. State Farm Center on the University of Illinois campus has agreed to light up in green, teal and pink for that night. Dave will run the camera as I tell my story live on the broadcast. Friends are welcome to join us. https://www.metavivor.org/take-action/campaigns/lightupmbc/

Fourth, I am still an ambassador for My Density Matters. It seems like almost every week I receive a message from someone who has found out they have dense breast tissue but their physician is not ordering any scan beyond the regular mammogram. I direct them to our website and coach them on what to say to their physician.  I do not want my story to become anyone else’s story. Know your breast density and know what to do if you have dense breast tissue. https://mydensitymatters.org

Fifth, this fall you will see me on social media with my friends Greg Niewold, President of Power Planter, and Jenny Simpson, owner of Creekside Nursery in Charlotte, NC. There is a live auction on the LightUpMBC virtual event. Greg, Jenny and I will be presenting the opportunity to bid on a special package that you won’t want to miss. Dave and I are flying to NC in a couple weeks to film all the segments. Stay tuned for more information on this. 

Ways You Can Help

You can help me by sharing some piece of information with at least ten people you know. Print a resource page from the My Density Matters website and send to women you know through work, church, or social activities. Follow My Density Matters and LightUpMBC on social media and share their posts. Share my fundraising page through email or on your social media. Join me at the Be a Hero Fun Run on October 12. Tune into the LightUpMBC virtual evening on October 13. 

I am currently on a treatment that did not exist when I was diagnosed in July 2019. Research keeps me alive. 

Dave & I left Elliott around 4 am this morning. We hopped off I-57 long enough to stop at Casey’s in Neoga. We continued through the little town of Sigel before we hopped back on the interstate. We enjoy reminiscing about who we know from the small towns from our 4-H House and Nabor House days at the University of Illinois. (Jane and Brad for the win today.)

My labs are looking good and we had a good appointment with my team.

Today is treatment 87. Amazing. Before #88 in 3 weeks I will have a brain MRI and visit radiation oncology, get a bone scan, and get a chest/ab/pelvic CT. It’s time to see if brain surgery, brain radiation, and the new chemo pills have knocked everything back into control again. I am still slowly weaning onto Capecitabine (Xeloda). It had better be working because the side effects are not fun.

We’ll get out of here in time today to get lunch at Blue City Deli. The weather is gorgeous today so I may be able to get a glimpse of the Budweiser Clydesdales today, too, as we pass the brewery to get to the deli. It’s been so hot this summer that they haven’t been outside when we have been here.

There are several trips to St Louis coming up with all these medical appointments. We will enjoy our time together and hope that the cancer is back in check again.

UPDATE

The horses are out and lunch was delicious.

Saw my oncologist today and delivered a dozen Not Dead Yet cookies to her team for my 5th Cancerversary. Will start taking Xeloda again, slowly. Now preparing for Treatment 86. There are extreme heat warnings here in St Louis but it is nice and chilly in the chemo pod. We’ll grab lunch at Blues City Deli on our way out of town. We highly recommend it if you’re in St Louis.

By sharing my story, I hope to raise awareness about breast density and metastatic breast cancer. I am an ambassador for My Density Matters. Here is a link to their website. Click on my photo (photo credit to my daughter) to read my story:

https://mydensitymatters.org/programs/my-story-matters/

Please help me spread awareness. Share my story. I am also willing to speak to organizations and at events.

I acknowledge your presence, Anger. I cannot pretend you aren’t here. Perhaps you need to sit down and say your piece, then sit a spell, so that, then, you can depart and allow your cousins Mercy and Grace, to take your place. I will not banish you or confine you to the cellar. Instead, I will pull up a chair and allow you to visit. But only a visit.

Today marks another year around the sun for me and I thrilled to be here. I slowly weaned back on Tucatinib and my body is tolerating it. Dave and I will go to Siteman Cancer Center on Wednesday to visit my oncologist and get Herceptin #86. I will also begin slowly weaning back on Capecitabine. These 3 drugs (Herceptin, Tucatinib and Capecitabine) are part of a clinical study called HER2CLIMB, a study that did not exist when I was diagnosed 5 years and 3 days ago. Funding metastatic breast cancer research keeps me alive.

On Saturday, October 12 I will be participating in the Be a Hero Fun Run in Plainfield, IL. If you are in the Chicago area, join me for a fun day raising awareness and money for metastatic breast cancer research.

On Sunday, October 13 – National Metastatic Breast Cancer Day – I will sharing my story on a live virtual broadcast for #LightUpMBC. I will be standing in front of State Farm Center in Champaign, which will be lit up in the colors of the metastatic breast cancer ribbon – teal, green and pink.

My story and my fundraising link:

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

I hate July.

Every single day in July now holds specific traumatic memories. I know what I was wearing. I can see and smell and hear those days. I can see the faces of those around me trying to process my new truth of Metastatic Breast Cancer.

I cannot – absolutely cannot – enter the exam room at my local doctor office where I heard, “There is never an easy way to say this.” I clenched Dave’s hand to keep from falling into the abyss.

I hate July.

I’ve spent this month the same way I’ve spent the last 5 years – clenching tightly to Dave’s hand. My two besties since 7th grade, Malinda and Kathy, have been keeping close tabs on me, too, because they understand how hard it has been to hold myself together. Just a few days left…

Today Dave and I delivered Not Dead Yet cookies to some special people. I’m grateful to my friend, Michelle Brucker, at Sweet Kreation in Gibson City, IL, for providing the delicious and beautiful cookies! She used the colors of the Metastatic Breast Cancer ribbon – pink, teal, green. It was my way of shifting my focus today to people who help me.

Now it is evening and Dave has left for work and I’m finally alone with my thoughts.

I hate July.

I hope I have 5 more Julys to hate.