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.
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.
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.
Tonight (12/21) is the first time I’ve been home to have dinner since Dec 7. Everyday since Dec 7 I have declared I have never felt more tired than right now, but somehow I’ve kept on marching. Tonight I am more tired than I have ever been in my life. I hope this cycle ends soon, or I might end.
I attended a Blue Christmas service tonight. A Blue Christmas service is a reflective worship service to honor those who are grieving or in pain, typically held on or around the Winter Solstice.
Yesterday I buried my mom.
When your mom’s funeral flowers are among the poinsettias decorating the front of the church at the Blue Christmas service, that seems like the deepest blue possible.
So I am home, finally, trying to find some shred of normalcy. I’m eating what my mom and her mom always made me when I needed extra love – buttered noodles with milk.
Monday I have treatment #93.
2025 has been an absolutely painful, difficult, horrible year.
Do not stand at my grave and weep I am not there. I do not sleep. I am a thousand winds that blow. I am the diamond glints on snow. I am the sunlight on ripened grain. I am the gentle autumn rain. When you awaken in the morning’s hush I am the swift uplifting rush Of quiet birds in circled flight. I am the soft stars that shine at night. Do not stand at my grave and cry; I am not there. I did not die.
New Siteman Cancer Center – Washington University Medical Campus
On Tuesday, December 3 I had a brain MRI, met with my radiation oncologist, met with my breast cancer oncologist, and had treatment 92. It was a very long, exhausting day. I can only receive my brain MRi and see radiation oncology on the main campus, so I switched my treatment to the brand new Siteman Cancer Center – Washington University Medical Campus.
It is absolutely beautiful and definitely patient-centered in every bit of detail and design. It has its own parking garage and each level has an entrance to the building. The pharmacy is right on the first floor near the entrance, along with a small coffee shop with a handful of food items – including ice cold Diet Coke. The blood draw from my post was in the infusion center where everyone has their own little room, instead of myriads of curtains attempting some privacy. It is very important to have a sterile environment when a port is being accessed so it actually makes it safer for me to be in my own room. There is a whole wing for breast cancer patients, which is a little sad to consider how prevalent breast cancer is compared to other types of cancer. The examining rooms are much bigger. The new infusion center is wonderful. We each have our own room for infusion. I cannot begin to tell you how much nicer it is to have peace and quiet and privacy. And the whole building is designed with huge windows showing glorious views of the city.
New gowns for breast cancer patients Exam RoomExam Room Private Infusion RoomPrivate Infusion Rooms – the nurses can monitor us by sight Exam RoomLots of space for Dave
Besides enjoying the new building, my brain MRI was clear. That is 2 in a row and hasn’t happened since the brain Mets were discovered in November 2020. We hope that means the new treatment is working. I am permanently not taking Xeloda anymore since my body cannot tolerate it. The HFS is slowly improving. I was prescribed a steroid cream that mostly takes the pain in my feet away. After 2 months and 2 days of my feet feeling on fire, it has taken a huge weight off my chest to see it start to dissipate. This leaves me on Herceptin, Tukysa, and Zometa. A good brain MRI and some relief from constant pain takes care of my Christmas wishes.
Unfortunately my mom had a heart attack over the weekend and is in a hospital in Champaign. With Parkinson’s, too, life isn’t easy for her or her caregivers. Dave, the only person who gives me care, is also helping me with Mom. I keep finding new levels of exhaustion, but I try to gut through it for my mom. If you are the praying type, my mom needs them.
I am not in control. 