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/

Today was my 94th treatment. We will listen to the Illini men’s basketball game on the way home. Uneventful day except for ralphing in the treatment room. That is a first for me. At least I had my own room for the experience.

The departure time for our trip to St Louis came early. Dave & I picked up a bonus traveler, Haley.

My day began with a nurse accessing my port and drawing blood for labs. My labs were not the best, but still okay to continue to treatment. My immune system is the weakest it has been in 5 years and I am extremely anemic. Much of this comes from 5+ years of treatment. The last 3 weeks of my life did not help.

Next we began the l o n g wait for treatment. These 2 started and completed 2 puzzles while we waited. Siteman Cancer Center is closed Christmas Eve and Christmas Day, giving its employees a well-deserved holiday break.

Cancer, however, doesn’t take time off for holidays.

Patients with Tuesday or Wednesday treatment days have to be squeezed into the 3 remaining days of the work week. You have to stay pretty close to your schedule for your health and so your health insurance company does not deny the claim because it isn’t within the correct time frame. Can you imagine the chaos?

I was not called back to the chemo pod until over 2 hours after my scheduled time. Not a typo. Do you remember the Snickers commercials where people need a Snickers to be nice again? That was me today, except with a Diet Coke. This isn’t typical of me, but I’m tired and kinda fed up with life.

My companions were very patient with the patient. I gave them music trivia questions most of the time. Together, they have locked down several decades.

I love when the therapy dogs come visit! This is Gibson and he is a very good boy. He didn’t want to leave Haley, the animal whisperer (just like her Gran).

Today I received Herceptin and Zometa for treatment #93. I only get Zometa every 4 treatment cycles. It makes me feel like I have the flu for 2 days. This will be Christmas Eve and Christmas Day for me. Ho Ho Ho. Again, cancer doesn’t observe holidays.

When we left the waiting room was empty and it was dark. There were many patients still in the middle of their treatments. Many nurses will have the start of their holiday delayed until everyone is finally done tonight. The day down here for me began at 12:00 and we left the building around 6:15. With a couple stops for a break from the drive for me, we will get home around 10:00.

It hit me today that I am now on this cancer journey without my mom here with me. I always said that Jesus is my rock, but I had my mom just in case. I’m scared, sad and lonely without her, but my family is stepping up in big ways to help carry my load. She taught us well how to love and help and protect and how to keep going when times are hard. Together, we will be okay. Because of her, we will be okay.