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.
XCIV
Category: Uncategorized
93 (Heidi’s Version)
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.
Bluest Christmas
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.
My Heart Shattered into a Million Pieces
Doris Irene Sheehan Punke
3/15/1935 – 12/11/2024
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.
Prayers Needed
Please, if you are so inclined, pray for my mom. I love her so much.
Sometimes it’s heavy
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.
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.
XCI
Today is treatment 91. Dave and I are at Siteman Cancer Center South County. It is quiet here today. My appointment is late so most people are gone for the day. We had a rainy drive down and expect a rainy drive home.
I finished “Chatter: The Voice in Our Head, Why it Matters and How to Harness It” by Ethan Kross. I highly recommend it. Kross discusses when the voice in our head is helpful and when it is not, and how to distinguish between the two. He delves into the impact of social media on the inner voice. Journaling is one of the tools Kross recommends to turn yourself to the narrative of your story, which helps step back from the negative into finding a constructive path forward.
I leave you with a smile. This is what toilet paper looks like when you live in a house with Madi, our 2 year-old lab. Her hobby is stealing it when we aren’t looking so she can chew on it. We rescue the remains.
Living on the Fringe
My Christmas Cactus must know that I need a little Christmas, right this very minute. She is blooming full force. She does her spring and summer on the oasis. I just try to keep her going until she can go back outside next spring. I guess I am just trying to keep me going until, well, I don’t know that answer. I feel that I am in the midst of a challenging period of growth. Those are always tough until I come out better on the other side.
I have always felt like I was on the fringe of society – not an outsider, but certainly not an insider. I had friends at school but that did not really translate to people to hang out with after school and weekends. Same at college. Same at every workplace. Oh, I can point to reasons beyond the obvious social awkwardness. I have always needed quiet to process and sort life. That is difficult for some to understand. I enjoy solitary hobbies like playing piano and organ. Yes – I can play in front of many, but most time is spent practicing alone, my favorite kind of playing. I was always surprised to hear when most co-workers went to an evening or weekend outing of which I was unaware. At my last job at the co-op, the other 5 people who worked in the main office with me would order lunch and never let me know. But, to be honest, I never felt deliberately excluded. I felt more like an after thought. I worked hard at work so I could get home to my family earlier in the evening. I also am really bad at reading people. I always assume the best in people until they show me otherwise, but then am shocked when they do. The election reminded me of my place in the fringe. While it stings, I needed the reminder that not everyone has good intentions toward me, my children, and people I love.
I have done a lot of advocacy work since I was diagnosed, both for metastatic breast cancer and for breast density. Advocacy requires many contacts and lot of social media. It is also work. Social media is not good for me. I am an empath so I take on more people and causes to care about and lack the ability to scroll past loud, angry social media behavior. I think of social media like the scene from the movie, “The Wizard of Oz,” when the curtain is pulled back to reveal that the Great and Powerful Oz is really just a tiny man working an effects machine. Social media gives us a false sense of security that we can say anything without consequences and we don’t have the opportunity to “read the room” to see if our true message is being received. We see examples of loud, threatening behavior on social media most days. Some of you handle it so well and I admire those who can debate their position in a calm, straightforward manner. That used to be me. That is not me anymore. Five years plus of a terminal illness, years of caregiving for my parents, the pandemic, the divisive nature of our society and some serious illnesses in my family besides my cancer has rendered me unable to handle social media. For that reason I am giving up my advocacy work and making my circle smaller. I am surrounding myself with the people I know for sure have my best interests at heart. Here, I hope to find some peace.
The HFS (Hand Foot Syndrome) is intolerable. I stopped capecitabine again but am still waiting for the pain to subside. Living with pain every moment, day after day, is exhausting. I am afraid that I am not going to be able to stay on this line of treatment.
Other channels of peace
My “inside oasis” is either at my piano or in my Llama Lounge (my former office for work). This is where I write, zoom people, draw, sew, and scrapbook. Two very special little girls provide me artwork, along with the painting my daughter made for me a few years ago.
Here are some photos of the Veterans Memorial in Elliott, Illinois. My dad was an Air Force Veteran and we used his memorial money to place a bench here and to fund some improvements to the memorial. Other than his time in the Air Force, my dad spent his life on the farm in Elliott. I love spending some quiet time here at the memorial when I want to think about him.
I can also count on my 2 black labs for providing stress relief. This is what Madi does when she wants her tummy scratched.
“Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid. “
John 14:27
I Hate Capecitabine So it Better Work
I am still battling Hand Foot Syndrome (HFS). My oncologist told me to take a week off Capecitabine and then restart at a lower dose. At the one week mark, my symptoms were still bad, so I was told to wait another week. That was Wednesday. My symptoms were still troubling but somewhat tolerable and I know I need this drug, so I started back. The HFS started becoming worse again Thursday evening. My toes really hurt today and I have another finger with a deep crack in it. I am determined to take it until next Wednesday (11/13) I have treatment 91 and the chemo infusion nurses will send my symptoms to my oncologist for review. But, of course, that will be the day I begin a glorious week OFF capecitabine. I am really struggling emotionally with the foot pain and not being able to walk for extended periods of time. Walking is so good for my physical and mental health and I miss it. I could not play the piano for church last week but should be able to get through it this Sunday. I’ve practiced most days this week and it is good to spend time thinking and praying through music.
December 2 will be a long day at Barnes. I have a brain MRI at 8 am and see my radiation oncologist for the preliminary results a couple hours later. It is wonderful that they do not make me wait long. Then I see my oncologist and have treatment 92. Dave and I will be at Barnes (main campus) from 7:30 am until around 4:00. So we will leave home around 3:30 am and get back home to the farm around 8:00 pm. We try to get things scheduled like this (in one long day) to save gas money and to avoid hotel expenses. It gets difficult, but driving up the lane as we get home is such an amazing feeling. For me, there is no place like home. In September I had my first clear brain scan since 2020. Here’s hoping for the second one in December.
No More Pretending
What the Affordable Care Act (which the President-Elect has promised to repeal immediately in January) does for me and my immediate family:
- It covers children until the age of 26. I have 2 of those.
- It eliminated lifetime maximum coverage amounts on all health insurance policies. It takes millions of dollars to keep me alive. When lifetime limits are allowed again, I will hit that in a matter of months, have to stop treatment and enter hospice care until my death.
- It eliminates pre-existing conditions. This is not a problem unless my spouse changes jobs. Then his new employer’s insurance company can deny cancer coverage for me.
Why LGBTQ rights matter to me:
Trump has called for rolling back societal emphasis on diversity and for legal protections for LGBTQ citizens. Trump has called for ending diversity, equity and inclusion programs in government institutions, using federal funding as leverage. I have very close family members, friends, and former students who are braced for impact. God created all of us. All humans matter.
Why it matters to me that our President-Elect is a convicted felon and misogynist who bragged about “grabbing them by the pussy:”
1990 summer internship with a grain elevator audit firm. My supervisor and I wrapped up paperwork at his house after returning from being on site. As I was leaving, he picked me up off my feet and tried to carry me to his bedroom. I was 21 and naive. I needed his recommendation for my resume. I actually talked my way out of that situation – but then had to show up at his house the next day to drive to another elevator. I finished the internship. I had to.
1996 working for a family-owned firm. In a performance review, I was told that I was doing “pretty good” but they wouldn’t know for sure about me until they saw how I handle my “reproductive window.” I asked for clarification and was told that it looked like I was in “prime child-bearing years” and if I was going to have babies and take time off, it would not be good for me getting promotions.
2014 interviewing for a position with the entire board of directors of a company, I was asked if I had explained to my husband that the job required a lot of evening and weekend hours and I would be going alone to visit farmers in their homes.
2015 I took over a territory for a male accountant. About ten percent of the existing farmer clients refused to work with a woman so they were assigned to someone else. One farmer yelled into the phone, “There is no way I will every work with a god-damn woman.” I had farmer customers at my next job, too, and received similar treatment. Funny, I do not remember that there was a pink CPA exam for women and a blue one for men. I guess I should be thankful that I passed the CPA exam without having a penis.
My opinion of many friends, acquaintances and family members has changed since the election. But then, I guess they already really did not care for me anyway. So now we are even and both in the know.
I am not in control. 