This is my truth:
I matter nothing to most people, and I matter everything to some. Matter more…
Yesterday I had my 14th bone marrow biopsy. My husband, Tim and I drove the two hour route down to Mayo, Rochester from our home in Eau Claire, WI. The same route we did four and a half years ago when I was diagnosed with Acute Myeloid Leukemia. I am still alive–a miracle–chemotherapy, a transplant, a blood clot, a new hip…issues. Trying to thrive in Life 2.0 with a second chance to dance and totally believe that I wouldn’t be here if it wasn’t for the pebbles of people who surrounded and supported my family and me through the last four years. I am a living example of the power of prayer, medicine, science and the magic of supported care rocking my world.
The blood that runs through my veins is 100% donor, my brother Pat’s DNA–which is considered an opposite sex transplant in the medical world. I am Shat! (Shannon/Pat) I have not taken up Pat’s habits of smoking Marlboros, drinking Mt. Dew, or hunting but I can’t help but think that his cells have infiltrated my body and mind with his optimism and grit. A new immune system with Pat’s smiling cells kicking the crap out of any mutant cells that try to stage a coup.
Thankful, of course. Grateful, yes. Restless, always. Worried, daily. Incessantly Hopeful.
I felt good enough this year to host Thanksgiving. Pat and family showed up with his camper, some firearms, homemade venison sausage and lots of beer––think cousin Eddie from Christmas Vacation. With a smile, a smoke, a few off color jokes, we celebrated. Easing back into routine. The dishwasher broke, 21 people, 4 beds, 5 meals. 2 stray kittens.1 neurotic dog. Not to mention the shot and wounded deer, blood trails, 4 wheelers, and a group of renegade neighbors in blaze orange with guns coming to HELP my people…..”Shitter’s full” and so was my heart. Abnormally normal. I sat in my chair for the next two days and did nothing. Got up took Nora to school. Sat in my chair and stared. With no dishwasher to unload, my day was less demanding! I have recovered and the dishwasher is repaired. Life charges on.
My two oldest children Emma and Connor attend college and my youngest child, Nora, made it through middle school. Eighth grade was the worst. Being a 55 year old mom who gets asked if I am Nora’s grandma was tough and then dealing with mean girls, “new math” and mood swings (hers and mine) may have caused as much anguish as a round of chemotherapy or radiation. ,
We persevered, but there are therapy bills and stories.
We have endured and continue to stand in awe of the entire process of this messy madness we call life. After eight months of cancer treatment in Rochester, MN–living in hotels, a $3000 a month apartment, and finally ending up in a friend’s house when we were totally broke financially, physically and emotionally. Finding a place so I could heal was the most difficult part of treatment.
Eventually we were allowed to go home and commute back and forth weekly, monthly, and now, finally we have reached a twice a year appointment schedule. Even -20 F.doesn’t deter our moods. Happy tears freeze to my face and I feel incredibly lucky to be wrapped in a blanket that Tim warmed in our dryer, heading down the highway in a rusty truck, feeling like I won the lottery. I am ALIVE. Breathing, complaining, loving….filled with raw emotions of wonder, angst and hope.
We made it through Covid quarantines, hybrid school schedules, my cancer relapse and now celebrating three years of remission. Back to normal or the new normal or just as abnormal as before, I don’t think anything will be the same. Things may be different in terms of how things get done but cancer doesn’t stop in a pandemic or post pandemic. Surrounded care—people supporting me got me through. We need each other.
I have a lot of ideas. I was a teacher for twenty eight years. I am ready for a new role. I am passionate about finding housing solutions for leukemia patients and stem cell transplant patients. Maura, my friend from college, helped us secure housing while in Rochester, together we formed a non-profit,Home4Healing, our dream is to give patients a place to heal while going through the cancer journey. Home4Healing, space and grace for blood cancer patients. Mission Possible.
Make it matter.
