Yesterday I had a stealth brain MRI with contrast to map out the radiation I will have next week. Then I went to a CT room that looked like this:

What I will describe as a warm bag of goo was placed in the black device toward the tube. I rested my head in it and two radiology technicians molded it around the back half of my head to form a tight mold. It dried and hardened as it cooled. Next they placed a hot plastic-like sheet on my face with only my eyes and nose exposed. They stretched it tight and kept stretching and pressing to form a mask. They also screwed it into the mold they had just formed. It also hardened as it cooled. once this was all done they sent me into the tube for a brain CT. They made marks all over the mask to use when they position me for radiation next week.

SRS (stereotactic radio surgery) delivers high doses of radiation to precise areas. I will have 5 SRS treatments next week, Monday through Friday. The goal is to eliminate the cancer currently in my brain. The treatments will take less than 30 minutes each, including time to get me into the mask and back out the door. I am hoping to drive back and forth every day to St Louis for treatment, a 7 hour round trip. My radiologist told me I can drive myself to and from treatments. Dave will be able to do a couple days to help me out.

Today is Tuesday and we are back on the road to St Louis. I will be at Barnes from 8 am until 6 pm. I will have a whole body bone scan and a chest/ab/pelvic CT. Then I will see my oncologist for results. Finally I will go to the chemo pod to receive treatment. Also today I begin the 2 oral chemo drugs. These both cross the blood-brain barrier so hopefully this will stop any more brain tumors from appearing. The trade off is some pretty nasty side effects.

I am feeling pretty low these days. My vacation was mentally great but left me physically exhausted. I manage the care for my elderly mother and those job duties keep increasing as time passes. There is no part of my life that resembles my life before cancer. My soul aches to return to that life where I was physically able – able to work, able to walk and hike and go wherever I want, able to exist without constant pain. I miss my old life that was not filled to the brim with medical appointments and treatments and procedures. There is no dignity in cancer scans and treatment. I miss the old me who had plans for the future. Our remodeling project should be completed this before summer ends. I am using retirement funds for this since it highly unlikely that I will live to reach retirement age. My goal is to spend time on the farm I love with Dave and my dogs. That is it and that is everything.

I will spend 7 of the next 15 days at Barnes in St Louis. Next Monday I will have a brain CT and MRI and be fitted for a mask for radiation. The next day I have a bone scan and a chest/ab/pelvic CT. These were scheduled for August but have been moved up due to troubling symptoms. I start my new line of treatment the same day. I am dreading the side effects but hold hope that we can make them bearable over time. Then I have radiation to my brain Monday through Friday of the following week.

We had a trip to Pittsburgh scheduled long before the new brain tumor appeared and it was good to explore a new city and take my mind off cancer for a bit. It is a beautiful, old River city with much to explore.

Please keep us in your prayers for safe travels, successful procedures, minimal side effects, effective treatment and the mental fortitude to keep going.

My oncology team met today before my appointment. Instead of gamma knife, I will have 5 days of radiation to my brain tumor. This will allow them to be more precise in treatment of the tumor and not healthy brain tissue. There is also less chance for necrosis down the road.

I am delaying this to take a vacation. I need to refuel a bit.

On June 10 I will have a brain CT and MRI and be fitted with a mask to hold me in place during treatments.

On June 11 I am having neck down scans and treatment. I also start my new oral chemo meds that day.

June 17 – 21 I will have daily radiation to my brain tumor.

Some additional refueling came today when my oncologist’s nurse coordinator procured a drug copay card that will lower the total copay on the 2 new chemo drugs to $93 every 21 days (instead of $300). What a relief!

Tuesday I meet with my radiation oncologist to plan for gamma knife on the margins of the brain tumor that was removed at the end of April. While I am certainly not looking forward to another procedure on my brain, the tumor needs to be eradicated.

In June I will be changing to a different treatment, my second. I lasted over 4 years in the first line of treatment. I had hoped for more years, but we need to stop more brain tumors from growing. Part of the new treatment will be infusion and part will be oral. My co pay for the oral drugs is $300 every 21 days. It will be worth every penny if it works. The side effects of the new treatment will be much worse than what I’m currently taking. I’m trying to wrap my head around all of it.

My tank is completely empty.

https://youtu.be/d9_PxplXOY8?si=e13eKBox3W7wi1wo

“I know I can’t be the only one, who’s holding on for dear life

But I know God knows, when it’s all said and done

I’m not OK, but it’s all gonna be alright

It’s not OK, but we’re all gonna be alright”

Today is treatment #83. I saw my oncologist this morning. I’m receiving infusions of Herceptin and Perjeta.

Mary Kay donated these gift bags for patients in the chemo pods. 🩷🩵💚

Life has been spinning out of control lately. I am blessed beyond belief with a support team led by Dave and some incredible friends. One of them, Joy, knows my love of poetry and my mantra of HOPE. She sent me this:

Hope

by Lisel Mueller

It hovers in dark corners
before the lights are turned on,
it shakes sleep from its eyes
and drops from mushroom gills,
it explodes in the starry heads
of dandelions turned sages,
it sticks to the wings of green angels
that sail from the tops of maples.

It sprouts in each occluded eye
of the many-eyed potato,
it lives in each earthworm segment
surviving cruelty,
it is the motion that runs
from the eyes to the tail of a dog,
it is the mouth that inflates the lungs
of the child that has just been born.

It is the singular gift
we cannot destroy in ourselves,
the argument that refutes death,
the genius that invents the future,
all we know of God.

It is the serum which makes us swear
not to betray one another;
it is in this poem, trying to speak.

https://donate.metavivor.org/fundraiser/5554408

Beginning this year I am dedicating my fundraising efforts to Light Up MBC. I will participate in the Light Up MBC walk in Illinois later this year. I hope some of you will join me.

My goal is to raise money for metastatic breast cancer research while also raising awareness of the importance of adequate screening for people with dense breast tissue, like me. Maybe this research will extend my life. Maybe this research will save someone else in the future.

On Tuesday I saw my neurologist for a surgical follow up visit. I was released from all restrictions. Pathology and post-surgical scans show that it was a tumor from 2021 that had been treated with gamma knife that started growing again. There was cancer and necrosis. The necrosis was removed. Most of the cancer was removed but I will have gamma knife as soon as possible on the margins to make sure we got it all. I’m waiting for Radiation Oncology to call and schedule it.

Yesterday I was in St Louis and today I am heading to Chicago to choose a granite slab for my kitchen. My ability to keep going doesn’t mean I am strong or positive or a good person. Cancer doesn’t make me any of those things. I’m an extremely flawed human who is grateful for today, hopeful for tomorrow, and trusting that God will still help me become the person I’m meant to be.

https://videopress.com/v/88yca1rY?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true

Today is a hard day with lots of physical pain mixed with some heartache that only family members can cause. (If you know, you know.). I had hoped to get back to church today but could not pull myself together enough to get there. Church should be more like a hospital where you are celebrated for coming no matter how late into the service you arrive and there should be a section for people like me who just want to roll there in our leggings and hoodies. I also need a section for people who cry when the feels hit a bit too hard. Also it is just nine days after brain surgery so just maybe I should go easy on myself. I am trying to be my own friend, but baby steps.

Dave, Madi and I went for a ride in the truck. We got coffee and meandered around so Madi could see horses. (Yes. She is a big baby.) I returned to bed when we got back home, and I am mostly okay with that. I imagine one of my friends saying this and imagine how I would absolutely support and encourage them to spend the day being curled up in bed. Tomorrow is a new day.

https://videopress.com/v/U8KDAhS2?resizeToParent=true&cover=true&preloadContent=metadata&useAverageColor=true