I am blessed with some truly great friends in my MBC Family. One of them has her own blog, “No Half Measures.” Her last two blogs explain my own feelings better than I have been able to do myself. Both links are here. Please read them if you wish to understand more about me.

Thank you, Abigail, for your advocacy, your tireless work to facilitate support for us, and mostly for your never-failing friendship. Your well-timed messages, cards, and memes help me keep going on the worst days.

https://nohalfmeasures.blog/2023/06/27/on-outliving-the-statistics/

https://nohalfmeasures.blog/2023/07/03/outliers-unicorns-exceptional-responders-outliving-statistics/?fbclid=IwAR3PE1tQCJcgo5JPNo0t1vlKAuN_K31MiJOTJyn2F4MSR2UMDLCpZXWO6qs_aem_AX2EMqAddBXa9NM4skdHrHBXO6UvjHaZ-4ygGx19RGopEMg1sJsENxqikG-yhLFcTow

I heard this word this evening and it set my mind whirling. Today was an especially awful day with burdens piling down on my family. Fighting medical insurance and struggling to pay medical bills along with the health problems that prompted it all made me lose any trace of hope today. I poured my heart out to my momma and told her that, even if we won the lottery tomorrow, that would only mean the bills would be paid, but the health problems would still be there. Not much of a victory. She promised to pray and I did the same before a support zoom with some especially dear MBC friends. A surprising phone call changed the trajectory of my day and restored a strand of hope. In that call was a discussion of cravings and I haven’t stopped thinking about my own cravings. I’m enrolled in a weight loss program so I automatically thought of chocolate and carbs, then my beloved Diet Coke with no nutritional value and way too much caffeine for someone battling brain tumors, followed by more time, and always always more money. After a highly anticipated event, I find myself going to bed that night feeling a bit melancholy. Empty.

Nothing on this earth can ever fully satisfy me. I expect my friends and family to fill all the empty spaces in my heart, but they cannot and I need to stop expecting it of them. I cannot fill all the empty spaces in the people I love most dearly. I can offer what I have to give but I cannot allow people to expect it of me. It isn’t fair to make my loved ones think that am the one who can make it all better. My faith is the only thing that can make me feel like I am enough and that I have enough. I go to bed tonight still with MBC, family struggles abounding, insurance battles to fight and astoundingly high bills to pay. But I go to bed with HOPE because God gave me a brief phone call that answered a prayer to be able to hear that voice today. I go to bed with HOPE because I know God is taking care of me. God has made me fruitful in the land of my affliction.

I’m a farm girl so for me, “stable” brings to mind our big red barn that has sheltered cattle, sheep, swine, horses, chickens, cats and dogs in the 150 plus years it has existed. Stable can also mean something that is firmly fixed or a sensible person. In the medical world it means something that is not deteriorating. I had neck-down scans on Friday, June 16 that show I am not deteriorating, at least due to cancer, from the neck down. I have 6 healing rib fractures. The newest ones are likely from my big fall. (Yikes! I knew that one really hurt.) I took the Amtrak train down the night before my scans and was able to catch the train home soon after the tests were done. I retrieved the CT scan results from My Chart on the way home. The bone scan results uploaded on Monday.

June 20 was my 67th cancer treatment. I drove myself down and back the same day for that one.

There really should be a rule that, once you have MBC, there are no other problems in your life. Alas, that is far from the case for me. Those stories involve others so I will just ask for all your prayers for my family. We are in great need of them.

I began Beth Moore’s “Align: 31 Days of Prayer Aligned with God’s Desires” on July 1. I had started to feel like God wasn’t listening to me. While not true in any way, I am trying to shift my prayer strategy to focusing on God’s interests instead of mine. Oh, I’m still pouring my heart out to God for help with my family, but I am also expanding my prayers to deliberately look more at the needs outside my small part of the world to include humankind. Today I read Luke Chapter 2 to look for ways to shape my prayers. I was not very optimistic going into the reading that I would find much in the story of the birth of Jesus. Yet, two verses stuck out as though they were in a bold font waiting for me to read them. Luke 2:19 “But Mary treasured up these things and pondered them in her heart.” Luke 2:51 “…But his mother treasured all these things in her heart.” God certainly understands mothers. I pray for blessings for all mothers (by birth or other) who treasure their children yet have hearts filled with fear and uncertainty. Help them to turn those children over to God since God is the most loving parent for them.

Today’s devotion said, “As you trust and obey God, he will either deliver you from your affliction or give you a testimony like Joseph’s: God has made me fruitful in the land of my affliction. “ May it be so.

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.