This morning some of my family walked the old Chain of Rocks Bridge, originally a motor route, used by U.S. Route 66 (US 66) to cross over the Mississippi. The bridge now carries only walking and biking trails over the river; the New Chain of Rocks Bridge carries vehicular traffic to the north. The old route to the bridge is now called Chain of Rocks Road.
Today is my 66th chemo treatment which seems a bit surreal. I will have neck-down scans before the next treatment. Some extra prayers would be appreciated since my anxiety levels always rise as I anticipate the results. I’m not very prompt in returning calls and messages these days so please be patient. Please know that I read cards and messages multiple times and appreciate all of your prayers and support.
Before my metastatic breast cancer diagnosis I had learned to meditate on the advice of my then-therapist. It certainly wasn’t easy. I used a free app on my phone and still remember when I was proud to be able to last 5 minutes. I used meditation frequently after my diagnosis, especially during chemo treatments, radiation treatments and gamma knife treatments. Meditation is not an escape from the situation; Rather, it is a discipline that allows you to be present only in the moment without a jumble of mixed messages turning in your mind. Life for my family became pretty messy in the last year and I stopped meditating because I could never turn off the roar of my mind. My current therapist has asked me to work on learning to be.
Learning to be is a spiritual discipline of solitude, prayer and meditation. It is the practice of mindful self-compassion. I was born into a caregiver role. I feel a strong sense of duty to family and have worked to be always available, resourceful and dependable. Unfortunately I never learned to also make that care available to me. If I can give it to others, I know it exists in me. I need to learn how to access it, to stop believing I am alone in my problems and to find power in connection. Mindfulness is a way of turning toward a difficult experience instead of away from it. We tend to look for escape from all the thoughts and emotions that come with difficulties. Instead, we should turn toward those thoughts so that we can have some compassion for ourselves and learn to take care of ourselves as well as we take care of our loved ones. I am starting back with basics of meditation and also practicing sitting quietly with my thoughts instead of trying to escape them with busyness.
It has been more than 3.5 years since my metastatic breast cancer diagnosis. That means I have outlived the average. The average survival for an MBC patient with brain mets is 2 years. My first brain mets were discovered 2.5 years ago yesterday. People like to tell me that I’m going to live for many years, even though none of us know that timeline. People say those things because that is what they need to believe. Sometimes I say it simply because I need to believe it. But every week friends in my MBC groups face progression. It is rare for two weeks to pass without the loss of an MBC friend. I will have my 66th chemo treatment this week. The side effects are cumulative. Bone and joint pain challenge my daily activities. Sudden diarrhea is a regular occurrence to the point that I prefer to stay home and bring spare clothes when I leave home. My finger nails and toe nails crumble like chalk. Chemo brain causes aphasia to the point that I now subscribe to brain games that I play every night before bed to try to combat the loss of word recall. And although we like to say that money doesn’t matter, the financial toxicity of MBC is challenging.
I have embarked on a new journey to not hide from my emotions using false busyness. I am embracing my friends in the MBC community who understand my challenges so well. I have found two online support groups and look forward to those biweekly meetings. I am using word and art journals to name the things roaring in my head so they will be quiet and allow me to rest. I use my oasis (my secluded west porch on my farmhouse) as a spiritual beach. I turn to God as I would a doctor, teacher, therapist or friend. My problems might be very different from yours, but I wonder if these same practices would help you, too?
Day 2 after chemo #65 has been a mixed bag. I was able to work with my trainer and had an appointment with my primary care doctor to get a shot in my lower spine for pain. I had a long soak in the tub with epsom salts. Things were looking up. But then I realized I was stuck in the tub and had to ask my husband to help lift me out. That process erased all the pain relief from the epsom salts. Pride goes before a fall. My limitations are real and I cannot pretend they aren’t there. And yet…
All my kids were home for a visit at some point today. The shot is really helping my lower back and my other prescription meds are relieving the pain from my afternoon adventure in the tub. Right after Dave helped me to bed, an MBC sister shared a You Tube video of a song that really helped – solely by coincidence. It is a gorgeous day on The Oasis and my dogs and cats love me even when I am angry at and humiliated by cancer. So I’m sitting here counting my blessings and thinking of a song from my childhood.
“Happiness is morning and evening. Daytime and nighttime, too. For happiness is anyone and anything at all that’s loved by you. “
One week ago I was in Cancun. Today I am in St Louis at Siteman receiving my 65th treatment. For today that means Herceptin, Perjeta, and Zometa. I’m loving spring weather and more sunshine in my days.
The best part of treatment day is spending time with Dave. I’m still feeling rested from my vacation and that helps me handle cancer and treatment side effects much better. I also spent an hour last night on a zoom gathering with several MBC friends. I look forward to these meetings and these ladies fill me with love and hope.
Heidi’s Hope Boxes were introduced in the fall of 2022. They were sold by Power Planter, a company owned by Greg Niewold, a dear friend of mine. Each Heidi’s Hope Box contained a pink Power Planter auger, 10 pink tulips bulbs from Abbott-Ipco, “Probably Benign,” a book by Leslie Ferris Yerger about the story of her Metastatic Breast Cancer diagnosis, and important information from My Density Matters explaining how breast density affects the effectiveness of mammograms and explaining how and why you should know your breast density. Proceeds from each box went directly to My Density Matters.
We had planned to have dozens of tulips in this area among several new trees. We postponed the tree planting to 2023. We lost many of the tulips to squirrels who dug up the bulbs and left many tiny holes in the ground. We also lost many tulips due to the two large trees in this area.
These 2 black walnut trees are nearly 150 years old. Black walnut tree roots produce juglone, a toxic substance released when the roots of other juglone-sensitive species come in contact with walnut roots. This fall, I will choose a plot farther away from these trees for the Heidi’s Hope tulips!
HOPE is a word I choose to emphasize in life. When I was first diagnosed with Stage IV breast cancer in July 2019 it had already spread to my bones, liver and adrenal gland. Since then it has also spread to my brain. Dave and I used a Power Planter auger that fall to plant dozens of fall bulbs because I had HOPE that I would be around in the spring of 2020 to see them bloom. Now we plant more bulbs on our farm each fall to renew that HOPE.
I want to see your Heidi’s Hope tulips! Please post them on social media and tag me, Power Planter, and My Density Matters. Let’s spread some hope around in a world that needs it.
Today is my 64th chemo treatment. Dave and I left home at 5 am and made the 3.5 hour drive to St Louis. The patient was actually ready to leave on time today (highly unusual) so we arrived with time to spare.
Since we arrived with time to spare, we parked at the top and I was able to get in a walk before my medical day began. We also stop along the drive for me to make laps around a rest stop, as this generally makes me a lot less sore the day after our trip. They are building a new Siteman Cancer Center location down here right next to the parking garage. It is expected to open in 2024 and will certainly improve my patient experiences. I remember hearing about plans for this building not long after I was diagnosed and I am so thrilled to be around to see it coming to fruition.
The building on the left is the Children”s Hospital. I have friends whose children have received cancer treatment here. It is a first class place. It also houses the place where someone we love received a diagnosis of autism many years ago. I would prefer if all children were spared from diseases and conditions. Maybe someday…. The building on the right is the Center for Advanced Medicine, where I get my scans and treatment and where I see my oncologist.
St Louis is 3.5 hours southwest of home, so it is always warmer here and I enjoy seeing things bloom earlier than we do at home. Dr. Folusa Olabisi Ademuyiwa (Dr. Bisi), my amazing oncologist, mentioned that her Heidi’s Hope tulips are blooming. Abbott-Ipco, Inc. donated tulips for the Heidi’s Hope Boxes sold by Power Planter. We raised money for My Density Matters to help spread the word about breast density and why it matters. Power Planter sent Heidi’s Hope boxes to my oncologist, my radiation oncologist, and my neurologist on my behalf.
My first appointment today was to access my port and draw blood for several tests ordered by my oncologist, Dr. Bisi. My second appointment was to see Dr Bisi to monitor my progress. My labs looked great and I will have neck-down scans in 9 weeks and see her again to discuss results. I have to take precautions while my port is accessed since it runs directly to major blood vessels. The bright green sticker means that I have been accessed and cannot leave the 7th floor. If I have appointments on other floors, they cover the area with a specially-made bandage for protection that leaves my chest sticky for days.
Noise cancelling headphones are a requirement for me in the chemo pod because, frankly, some people are just rude. Your chemo pod assignment is luck of the draw unless you have special needs ( I don’t) and I haven’t been very lucky lately. Three weeks ago a patient in my pod tried to bite one of the nurses and a man directly across from me coughed up mucus and spit it into a bag the entire time I was there. Six weeks ago the pod was filled with LOUD TALKERS – I could hear them over Rihanna in my headphones.
Dave will work a full shift plus this evening after he drives me home from chemo. He caught a little sleep on the floor of the chemo pod next to my chair. This is love.
The Tumor Board pulled out all my previous gamma knife treatment MRIs and maps and determined that the growth they see is actually necrosis, or, death, of tumor tissue. Barring symptoms they will see me in 3 months.
The results of my brain MRI are not what we wanted. My case is going in front of the Washington University Tumor Board next week to determine the next action. I am confidant I can get through this. Dave and the girls have been taking care of me.
Today I have a brain MRI and my 63rd treatment. I picked Dave up from work and we are headed southwest to St Louis. We will get back to Champaign in time for me to drop him off at work and I will head home to the farm and my girls. Dave and I enjoy these days together and we are a perfect team.
I took advantage of scanxiety-induced insomnia to make cherry hand pies last night. I love making pastries and Dave enjoys devouring them.