May is Brain Tumor Awareness Month and today was the first day of Mike’s second round of radiation treatment.
I think I knew that brain cancer was observed in May last year when Mike was diagnosed, but it was too soon to connect with it. We were still in disbelief. I didn’t want to have a connection. I still don’t; but, after a year of brain cancer invading and altering every aspect of our lives, this month comes with new meaning. One month ago I wrote as we were anxious to celebrate the one-year milestone. One year of doctor appointments, travel, treatments, pills, nausea, fatigue, weight gain, weight loss, infusions, injections, hospitalizations, MRI’s, tears and celebrations – it felt like we’d come such a long way. The progress Mike made was a result of hard work and dedication. We’ve learned a lot this year but especially that brain cancer is a cruel, unpredictable mf’er.
How can things change so quickly? We were finally beginning to get a handle on this “new normal” before it was so quickly ripped out from under us again. Over Easter weekend and the days that followed, Mike declined pretty rapidly. He began struggling with just about every normal function – his vision worsened, he lost hearing in his left ear, his speech and swallowing became affected, and his overall balance and coordination became so impaired that he’s needed full assistance getting around. I can’t even begin to understand the sadness and frustration that Mike is feeling. He’s lost so much independence in such a short amount of time. No matter how much I help him, I feel so completely helpless and watching him struggle is hard. After time spent in the hospital, an MRI revealed new tumor growth in a different location than last time. It was found in an extremely critical part of his brain - a location too dangerous to biopsy. We were expecting bad news given all of Mike’s quickly developing symptoms, but we were somehow still in shock. We always knew a recurrence was possible, even quite likely down the road, but we certainly did not anticipate it happening so soon. We’ve never ignored changes in Mike’s symptoms and we’re always quick to call the doctor at any hour. We visited the ER on multiple occasions to expedite imaging and other testing when something concerned us. I can’t understand how it got to this point. We still believe that Mike had a really impressive response to his treatment and first round of radiation (his other tumors still looked stable) but if even 1% of bad cells make their way out, then these new problems occur. It feels like the universe keeps knocking us down every time we see a glimpse of light.
While I no longer wonder why us? I do have so many other questions that will never be answered. Like, why right now? I struggle to believe that there is some grander plan the universe has for us at Mike’s expense. It feels mostly like horrible, horrible luck. I’ll never know why this is happening. I’ll never know why we have to go through such pain, but there are so many things that I hope can come out of this…
I hope that we’re the family sharing our story of defeating the odds and coming out stronger despite every card being stacked against us. I hope we’re the family able to provide hope to others going through a similar situation.
I hope that by facing such adversity so early in life, Dante and Dominic grow up to be empathetic, compassionate and resilient human beings. I hope they spread only kindness in the world. I hope they treat others with dignity and respect. I hope they understand the importance of their words and know that anyone they come in contact with could have a heart that’s hurting.
I hope that by witnessing how we’re taking care of daddy, our boys see not only the importance of helping others, but an example of unconditional love. I often think about how much they’re absorbing from the way I interact with Mike and respond to his needs. That very thought guides my every move. That thought grounds me in my moments of frustration. We stood at the alter at 25 years old reciting every word the priest said. In sickness and in health. We were young and could have never prepared for the weight those words would hold so soon after. I’d recite those very same vows 100 times over and I hope that our love for each other positively influences our children’s future relationships.
I hope our boys know that they are inherently strong but that they don’t always have to be. In those moments of weakness, I hope they know that it’s OK to show emotion and to get help when things feel unmanageable. That it‘s ok to talk about feelings. I hope they know that asking for help shows their very strength and by doing so, they can and will get through life’s hardships.
I hope our boys learn that family always shows up. Our families are one team with the very same goals: to make sure they feel secure and loved immeasurably while maintaining as much normalcy for them as possible, and to make sure Mike has the absolute best care and every opportunity to fight this. Pop helps almost every night with bath and bedtime. Mimi has been over by 6:30am every day to help me take care of everyone. Pop Pop has slept in our spare bedroom every night since we got home from the hospital. Their grandparents and I are the best team I’ve ever been a part of. Aunts and uncles and great aunts and uncles make a point to visit and lend a hand. Great Mom Mom at 94 years old makes homemade pasta for Mike every week since it’s one of the few things he can comfortably eat right now. Friends and even acquaintances have sent activities for the boys, meals, gift cards, and support.
I hope we all learn to be grateful for and present in moments that seem small or insignificant. To stop scrolling and put down the phone. When you’re battling cancer, or loving someone who is, you are forced to live day by day, even hour by hour, and those seemingly small moments are in fact big moments.
As for Mike, today he completed his first of fifteen radiation treatments to this new growth in his brain stem. We’re in for a really challenging few weeks as radiation typically makes everything much worse before there’s any improvement. Over the next week, I’ll be working with our doctors to devise a plan for after these treatments are done. Now that we’re dealing with this metastasis in the brain, we’re in a more difficult situation. Our doctor at Michigan is always willing to think outside the box and our doctor at Jefferson is always willing to support our plan. We went for another opinion last week and the doctor was pessimistic and unproductive. He told us it would be “nearly impossible” to find a clinical trial should we go that route. We’re writing him off as quickly as he did us. At the very least, he left us more confident in the medical team we already have in place. There is no sure shot treatment for this. Then again, there wasn’t the first time either – but, where there is life, and there are options, there is hope.
my constant little reminder:
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