Be a Hero Moved Due to Storms

Milli & Madi

Due to severe storms and flooding in the Chicago area, the Be a Hero Fun Run for #LightUpMBC has been postponed until Saturday, October 17.

Treatment 123 has been relatively kind, but I am grateful for another day of R&R tomorrow. Thank you all for your love and prayers and support. You help me so much on my bad days.

1-2-3

Today is treatment 123. My appointment time was 3:30. They shifted my location because they are so busy today so I will likely get out of here around 6:30 and home around 10:30 pm. On Sunday I will be in Chicago at the Be A Hero Fun Run. My previous blog post had the link to register or donate. Even if you cannot do either, please check out the event’s website as it features my friends, April and Lisa, and me. April, Lisa and I need more research for metastatic breast cancer. Be a hero.

Be a Hero

I’ll be at the Be a Hero event in Plainfield on Sunday to raise money for metastatic breast cancer research. Off all the money spent researching breast cancer last year, only 4% went to researching metastatic breast cancer – the only kind of breast cancer that kills. I get treatment 123 tomorrow and I will still don my Wonder Woman costume and head north to walk. I’d love to have you join me or donate money to my team or my fundraising page. It all goes to METAvivor for researching stage 4 breast cancer. Your donations may save my life someday.

https://secure.qgiv.com/event/lightupmbc/account/2221601

But I Am Safe in Here

On repeat in my brain these days is, “What do you do with your time?” The disability claim specialist has really put me in a tail spin. I really didn’t need her assistance with the tail spin. I’m a pro.

There was a meeting of a new-to-me volunteer group and it was not what my mind envisioned and I didn’t handle it like a champ so now I worry about the group and what people think of me. Anxiety is my enemy.

I volunteered for the food pantry at my church, which is on the University of Illinois campus and met some incredible student volunteers and felt so good driving home.

I met with my personal trainer at the gym 4 times this week and walked the other day. Yay me.

I baked bread which calms me and centers me in ways I cannot explain.

We welcomed a second calf. Life goes on.

In my weekly zoom metastatic cancer support group, a friend shared that her oncologists told her this week her death is “imminent.” Having cancer is hard. Knowing so many people with cancer is hard. Life is hard. Sometime I’ll blog about survivor’s guilt. It is hard.

I celebrated exciting news with one of my kids. Prayers answered. The news also brought to mind some truly happy memories of a job I loved and the very best co-workers.

I feel like I did a ton of laundry this week, probably due to big dogs and wet grass. Oh, so also a lot of sweeping up grass and dog hair.

I spent a lot of time at my desk on devotions, writing, and art. Madi and Milli are always happy to be my assistants.

I read a lot of poetry this week. This is my favorite new find for the week. I feel seen.

I had dinner with a dear friend who I had not seen in an embarrassingly long time. It reminded me of a sculpture that is meaningful to me.

Glen Martin Taylor sculpture

This sculpture shows the paradox of isolation. We build an emotional defense mechanism to protect our vulnerability, but this defense also traps us in a self-imposed prison. Is isolation a refuge or a confinement? That is not easily answered.

Reality Bites

I’ve been struggling this week. Treatment 122 on Tuesday didn’t help, although it has been kinder than usual. Fatigue and diarrhea are the big physical issues of the week. The company that holds my long term disability insurance policy is requiring me to re-qualify for the claim. This is the second time I have had to do this. Completing all those forms and forwarding some of the forms to my oncology team to complete really put me in a mental tail-spin. There is no logical fear that they will not re-certify me. I still very much have metastatic breast cancer and am in active treatment. They require complete access to my medical records, which I understand but it still bothers me. I still very much qualify for SSDI, a requirement for long term disability insurance claims. Requiring me to describe all this on forms brings a lot of feelings back up to the surface – feelings I work hard to suppress. They asked me what I do with my time. Ouch.

Taking care of my health and completing daily living activities is a full time job for me. This is not the life I imagined at 57. My peers are pouring themselves into their careers and earning money and saving for retirement. They have travel plans. I stretch my monthly disability check and take a tote bag wherever I go in case I vomit or crap my pants. I don’t have any personal beef with the people who greet me with, “You look so good!” But in my head I am screaming, “I vomited in the car on the way.” or “I have not had any food or drink in 6 hours so it would be safe for me to attend.” So why in the world do I feel the need to justify what I do with my time? I guess my heart is sometimes louder than my brain. My heart had other ideas for this life.

So what have I been doing with my time?

I packed up my infamous tote bag and went to the Illinois State Fair last week. I did use some emesis bags but also made a new friend in Willie the Llama.

I filled tens of pages in my sketch book.

I took Madi and Milli for some car rides to run errands.

I choose to continue to live while I’m alive. Where is the box for that on the form?

I Don’t Know About You, But I’m Feeling 122

Mood Lighting in the Infusion Room
Night Shift Workers Can Sleep Anywhere

We left the farm a 5:00 am today. I had a whole body bone scan and a chest/ab/pelvic CT. I had labs drawn and saw my oncologist. Now I’m getting treatment 122. We will likely get home around 11:00 pm.

The Dynamic Duo

We escaped the medical campus for lunch at Applebees. Don’t tell anyone! I’m not supposed to leave the campus once my port is accessed.

Those who spend time with me might not agree, but today’s scans show that I am STABLE. There is still a nodule in my right lung that is very small and does not appear to be growing and some fluid in both lungs, but not enough to cause any symptoms.

We come back down in 3 weeks for #123.

CXXI – Chemo & Diet Coke

We left home at 4 am to travel to Siteman Cancer Center for treatment 121. It’s 9:40 now and we are heading home. BED will feel good! My marathon of medical appointments is over for now. I come back in 3 weeks for a very long day of neck-down scans, an appointment with my breast oncologist to go over results, and chemo 122. I am so looking forward to 3 weeks of not making this drive.

Waiting Room Smiles

The Masked MBCer

Our 2:30 am smiles

We left for Barnes at 2:30 am today. I had a brain MRI scheduled for right when they opened and then met with my radiation oncologist. She only has preliminary results when we meet, so she calls me on the way home with final results. We were relieved when she called to say there are no new brain tumors. I haven’t had any new brain tumors since May 2024. This is the longest I have gone without new ones since they first appeared in November 2020.

I will try hard to recall today’s joy as I deal with the side effects of the cancer drugs making this happen. The last 4 days were especially bad. I struggled all day Saturday and through the night with a digestive system that explosively ridded itself of all contents. It was just the dogs and me at home and I struggled. I work hard to maintain a mask of resilience. Behind the scenes, I sometimes clean gross things from the bathroom walls. Let that sit for a moment. It’s as hard for me to write it as for you to read it. I still played the piano for church on Sunday and stayed for a meeting after church. No one there other than Dave and our kids knew what I was managing. I took my “just in case” bag with me into church and scouted out the fastest route to the restrooms. Luckily I made it through. There are many unknowns behind the masks we wear.