Nurse Madi

Nurse Madi

The scans yesterday showed no new cancer and existing cancer is controlled. I have some lung damage (small collapse) from years of chemo, which is expected. In two weeks I have a brain MRI and meet with my radiation oncologist. A week later I receive chemo 107 and get an echocardiogram. I get those every 3 to 6 months because my chemo drugs are known to cause heart damage. Today I did not get out of bed until 4:30. Tomorrow will be a better day.

It’s that time again.

As I write this it is 5 am and we’ve been on the road over an hour. Today I have a whole body bone scan, chest/ab/pelvic CT, labs, oncology appointment, and treatment 106. We will likely not return home until nearly midnight. It has been 6 months since my last neck-down scans. That is the longest I’ve gone between scans since I was diagnosed with MBC in 2019. In two weeks I have another brain MRI. I get those every 2-3 months, something that is not likely to change given my cancer’s propensity to grow in my brain. I have been experiencing a great deal of back and hip pain lately. The scans today should be able for us to determine if my pain is due to cancer or degeneration.

105

Arch

Dave and I left at 5 am for St. Louis. It was a beautiful morning and the drive was uneventful.

Barnes Jewish Hospital – my home away from home
Center for Advanced Medicine – CAM

Heidi’s Fun Fact: I never liked revolving doors. I always wondered if it was related to my extreme motion sickness. Since my brain tumors, though, I cannot use them. They make me extremely dizzy and I bang into the sides. I appreciate the regular doors on either side.

Cancer Care Clinic
Cancer Care Clinic Waiting Room
Preparing for Treatment
Treatment 105

On days I do not see my oncologist they access my port here and draw blood for the lab. We wait for results to make sure I am healthy enough to receive treatment today. Leukopenia and anemia are ongoing problems for me, but not severe enough to prevent treatment today. Once my oncologist sees the lab results she electronically orders the drug to be prepared in the Oncology Pharmacy. It has to be prepared on site and to my weight today. Waiting for pharmacy is usually the longest part of treatment. The nurse hooks up the infusion bag and it takes 30 minutes. Then they flush my port and de-access it. Then we are out the door for the 3.5 hour drive home.

Homeward Bound

Walk with Me

The Chicagoland Be a Hero Fun Run is set for Saturday, September 27 at Settlers’ Park in Plainfield, IL. Check-in starts at 10:30 am and the race at 12:00 pm. This will be my third year participating and it is truly a joyful event. There are vendors, raffle items and food. No one runs and no one times you. We just walk around the park. It is JUST FOR FUN and raises money for Metavivor. MBC Thrivers are honored in a brief ceremony at the end. I have a brand new Wonder Woman costume for this year’s event. When you register, join my team (simply my name).

Here is a link to register and join my team:

http://raceroster.com/events/2025/101592/chicagoland-be-a-hero-fun-run/register?team=845772

Here is a link to donate to my team:

http://raceroster.com/events/2025/101592/chicagoland-be-a-hero-fun-run/pledge/team/845772

Life of a Cancer Patient

Surprise Lilies on the Farm
Birthday Lunch

Life has been a whirlwind of activity lately. I celebrated my birthday and took a day trip to New Harmony, Indiana with one of my kids. Despite the heat it was a lovely day and I intend to go back when I can spend at least two days there and also when it is at least 20 degrees cooler. There are numerous historical sites and a natural museum – all things near and dear to my heart. I especially enjoyed the Cathedral Labyrinth and the Roofless Church. We had car trouble coming home and ended up catching a ride home with a very friendly tow truck driver. Angels appear in many different forms.

Cathedral Labyrinth
Part of the Roofless Church
New Harmony, IN

Two of our kids are staying with us temporarily in between apartment leases and I am loving it. On the days it has not been excessively hot we’ve gone for long walks. On the beastly hot days we go to town for coffee and tea. The labs are definitely loving having ALL their kids home to love on them.

Madi & Indie

Our farm is now a Sesquicentennial Farm, signifying family ownership for over 150 years. We were recognized at the Illinois State Fair on August 8. We also got to spend time with some dear friends and watch their daughter show her heifer. It was an extremely hot day. A side effect of my cancer treatment is a lack of temperature regulation. The heat got the best of me. I’m grateful for the TLC from my family and friends.

Representing the Fred & Doris Punke Family at the Illinois State Fair

We have a new baby calf in the pasture. She is doing well and loves to frolic.

I found a barn swallow nest in one of our sheds. This was taken the day they hatched.

I took a class at a community college on barn quilt painting. It was a lot of fun and I hope to make a large one to hang on our big, red barn.

I had treatment 104 on August 12.

This was Darrin’s first time coming with me to treatment. It was so nice having him with me.

Madi missed me while I was at treatment so she decided I needed help resting.

So how is my life as a cancer patient? I try to put a lot of life into living and I try to spend as much time as I can with the people and dogs I love. I do all these things with a digestive system that gives me a lot of trouble most days. I carry a change of clothes with me almost everywhere I go. But I still live.

Almost There

I am relieved that July is almost over. (If the extreme heat and humidity would also disappear in 4 days, that would be another relief.)

July 24 was my 6th Cancerversary. It was a difficult day. Many thanks to those of you who reached out. I covered Oreos in candy melt the colors of the metastatic breast cancer ribbon – pink, teal and green. Dave helped me deliver them around the area. The final stop was my primary care physician’s office – the place where I received the devastating news on July 24, 2019. “There is never an easy way to say this…” On that day I learned I had breast cancer that had already spread to my bones and liver (innumerable masses on my liver). On that day I shared the diagnosis with my elderly mom and my three children. It was the next day that I learned it had also spread to my adrenal gland. It was another 16 months before I learned it had spread to my brain.

Today is my 56th birthday. Six years ago my birthday became a sad occasion. I didn’t allow it to be mentioned for a couple years. Now I can manage a subdued remembrance. This was my first birthday without my mom Six years ago no one thought I would be alive to see 56. So I’m thankful, sure, but I want more.

Lunch with 2 of my 3 children 🩷🩷
Indie

In January we learned my best friend, Indie, had osteosarcoma. They said she would be lucky to last a month and definitely no more than 3 months. She is still hanging on, 6 months later. She isn’t well and struggles with mobility but is still the best nurse. She and I (along with our other lab, Madi) spend almost 24/7 with each other. She is happy and always perks up when there is an opportunity to beg food.

Madi and Indie sit on the east porch with me.

I’m going to leave you with a quote I’ve shared before:

“You don’t have to like it or want it or approve of it; simply allow it to be there – because it already is.”

103

Today was my 103rd infusion treatment.

On the days I have treatment without seeing my oncologist, I go to the Cancer Care Clinic at Barnes. It is a 24-hour clinic for cancer patients they created to help keep us out of the emergency room (and ultimately from in-patient stay). It is less hectic than the Siteman Cancer Center, the lovely new building a half block away. I heard a familiar voice today and saw Charis who was my oncologist’s nurse coordinator when I was diagnosed 6 years ago. I had not seen her in 5 years!

This means it was Charis who handed me the big binder given to new cancer patients to try to explain the things we need to know. This means it was Charis who spent time with me while I cried about the realities of chemo treatments that would never end, the brutal side effects and how to manage them, and how the scheduling would work. I learned of many services offered for patients that I could not receive living so far away. Dave and I learned when to call the office, when to call the 24-hour cancer nurse, and when Dave needed to get me to a critical-care hospital within 30 minutes of those symptoms first appearing. I live in a rural area 30 miles from the nearest ER suitable for cancer emergencies. It shouldn’t surprise you that my husband has mapped out a way to get me there in 30 minutes (should the need arise) and I have no doubt he would succeed. All these things remain true today, but after living with all this for almost 6 years, dealing with those potential emergencies seems a little less daunting. I used to talk to Charis on the phone a few times each week.

It is a hard week for me. Seeing Charis was a bright spot. She was quite surprised to see me. We all know why. Not today, Cancer. Not today.

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.

Find Out My Breast Density Day – February 19, 2025

I was honored to participate in a live Instagram event with Leslie Ferris Yerger, founder of My Density Matters, and Dr. Robin Roth, MD, breast radiologist and founder of @theboobiedocs.

This QR code will take you to the recording of the live event. You can also find it on the IG feeds for the three of us.

Text “Know Now” to 211-411 to accept the Know Now Challenge and receive resources all women need.

KNOWING can be the difference.