I’m getting some R & R at Barnes Hospital in St Louis. I’ve had 12 days of digestive revolt. My local health care interpreted some tests to think I had C Diff. Further tests down here show I do not and that is a relief. They still believe it all to be related to treatment. I will be here until they can get it under control.
I’m at the local hospital receiving fluids through my port because my digestive system is attempting a hostile takeover and the dehydration is extreme. I’m grateful this can happen locally.
Today was the last of 5 radiation treatments to my brain. I do not plan on driving more than 5 miles from home (the distance to town) until I return to Barnes next week. The techs administering my radiation asked if I had a celebration planned since this was my last treatment. I laughed. (They meant well, didn’t know the extent of my cancer, and apologized). I’ve seen lots of people ring bells this week in the waiting room (to celebrate end of radiation) and I clap and cheer and truly wish them the best. For Stage 4, there is no end of treatment. Next week I will return to Barnes to see my oncologist and receive treatment in the chemo pod.
I took the 2 new chemo pills for a week and half and am taking a break to allow my body to rest from the brutal effect they had on me. I lost more than 6 pounds in 10 days. Not fun. In a week or 2 I will start back on just 1 of the pills to try to determine which one is the main culprit.
Today was my third round of radiation to my brain. I come back Monday and Tuesday next week. The side effucks from the new oral treatment meds continue – diarrhea, nausea, mouth sore and fatigue. I’m picking up a prescription mouth rinse today down here that should help with all the blisters inside my mouth.
My ride down in the truck with Dave was productive. I found an additional part time care giver for my mom. I am so relieved! My mom had a procedure at the local hospital and a cousin handled that instead of me. Bonus points for my cousin! We are repairing a waterway and dam and adding an additional waterway on the farm and that project should begin mid-July. I believe we are charged with being good stewards of nature.
My oasis got some boards and a fresh coat of paint. I’m hoping Dave can find someone to help get the furniture back on it tomorrow so I can get back to enjoying my peaceful place of healing. I guess I’m in my bold color phase of life. Green seems to fit an old farmhouse.
1. DELAY
My radiation treatments will begin on Wednesday instead of Monday. This means I will have treatments Wednesday through Friday and then Monday and Tuesday. My treatments are in the afternoon so Dave will be able to drive me down and back and have time to get to work. He just won’t get to sleep much on those days. It will be nice to have a break over the weekend.
2. DAD’s DAY
My dad was a farmer his whole life other than his time in the Air Force. He wore bib overalls and sported a flat top – a true, squared up one thanks to his hairdresser spouse. He had an amazing dry sense of humor. He only wanted the best for me. There are daily reminders of him on the farm.
3. DIARRHEA (AND NAUSEA)
I began my second line of treatment on Tuesday with 2 oral drugs. I was warned of the side effects (side effucks as they are called in the cancer world) and they were not joking. I have prescription medicine to try to manage them. I’m hoping my body will adjust somewhat to them.
4. DISCIPLE
I was able to attend church this morning and it was so wonderful to be back. I am a disciple – a follower of Jesus. I am a member of Uniplace Christian Church in Champaign, a member of the Disciples of Christ Denomination. We are an open and affirming church. Check out this link to our website. (I’m also one of several people in the cover photo.)
5. DAVE
Happy Father’s Day to my life partner, Dave. He truly lives the “in sickness and health” part of our wedding vows to the fullest. He was with me when I was diagnosed and has been with me to the majority of my scans, treatments, and appointments. I could not still be here today without his support and his love. He is always looking out for me.
Neck down scans are stable. Treatment 84 happening now followed by the 3.5 hour drive home. I think I can.
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”
I am not in control. 