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.

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.

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.

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.

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.

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.

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.”

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.

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.

Two months have passed since my mom died. It’s just hard.

I’ve had 3 treatments. I had norovirus. I sorted through everything my mom owned (along with most things my Dad owned, as well.) I’ve had to make 3 thousand decisions, give or take. I’ve looked through about the same number of old photographs and mementos. My best friend was diagnosed with breast cancer. My black lab, Indie, was diagnosed with osteosarcoma and given a month to live (3 weeks ago). The highest elected official in my country is destroying it, including slashing most of the funding for cancer research. I am struggling with “loving my neighbors” who chose this option for me and our country.

I am busy handling the estate, making multiple calls each day to my elected officials, and loving my Indie. Due to a hacking issue I am no longer using FB or Messenger. I’m still using IG and What’s App. Emails and snail mail always work.

Spring will come.

Today was treatment #95 and my first day back in real shoes as the HFS seems to be behind me.

https://www.metavivor.org/blog/advocate-in-response-to-hhs-directive

I was diagnosed with MBC in July 2019. I was able to remain on my first line of treatment until May 2024 when I switched to my second line of treatment. Generally the amount of time a line of treatment works decreases for each new line. At this time there are only a couple other lines of treatment available for my subtype of breast cancer. I can only remain alive as long as there are new lines of treatment available.

I need breast cancer research to stay alive. No matter your political party, I am hoping you agree that cancer research is necessary.

Someone who also has MBC shared:

“I’m writing because one of the Executive Orders this week puts a freeze on communications from many Federal agencies including Health and Human Services (HHS) and the National Institute of Health (NIH).”

I’m sharing a link to a blog post by someone with MBC. We need your help badly. Cancer research centers all over the country receive grants from the NIH. We need you to email your federal representatives. It really does make a difference. Her blog has a sample letter using fund amounts from Colorado. There is a link for you to find your state so the email can be tailored to you. There is also a link to find the contact information for your representatives.

I’m asking for 15 minutes of your time. Please.

https://life-as-i-know-it.net/2025/01/25/please-help-end-restrictions-on-national-institute-of-health-%e2%9d%a4%ef%b8%8f%f0%9f%a9%b9/