After a few months of Matt showing clear scans and no evidence of cancer in his body, I was feeling positive about his (our) future. I felt hopeful that God would grant us several years of health. I hoped for him to be alive as long as possible, as healthy as possible, and to continue to be my partner and that we could raise our children together. I especially felt that our loving Heavenly Father would not leave one of his children, specifically Klaus, without a father because Klaus needs his father so much on a daily basis. I told Matt's mother recently, "My hope is that Matt will be around as long as Klaus needs him."
But we were given a humble reminder this past week when we visited Matt's medical oncologist for a follow up appointment. There was nothing new on physical examination. And scans were scheduled in February. But when we asked him some questions about Matt's specific cancer, which is epithelioid sarcoma, he reiterated to us the rarity of the disease and its sporadic, unstable, unpredictable nature of recurrence. He calls it a "bad actor."
"We've had six patients with this specific disease in the last five years. Do you think that is a lot or a little?" he asked us.
I replied, "That seems like a very small amount of patients with ES."
"No," he answered, "It's actually a lot."
When I reviewed Matt's notes from his first visit to his surgical oncologist, Dr. Rosenthal, he had told us there are 12 cases of this disease per year in the entire country.
We get the feeling when we visit Dr. Myron that he wants us to go travel, that he encourages us to go and do those things that we want to enjoy in life. Is it because he knows there will only be a little time that Matt will be well enough to do these activities?
I asked him, "How are your other patients with ES doing?" He paused. He looked at me. He smiled. And he completely avoided my question.
He doesn't like Matt's experience with the residual pain in his behind. He calls it sinister and he is as uneasy about it as Matt is himself.
Dr. Myron is aggressive in his monitoring for recurrence.
"Are you this cautious with all of your sarcoma patients?" I asked.
He answered with another reply about how dangerous this specific sarcoma can be.
We left the appointment with heavy hearts and a sense of doom and hopelessness. I cried as soon as I left the building.
"I was feeling so hopeful. I was counting on many more years together. And now I feel like we're lucky to have had this long," I cried to Matt.
We had a heartfelt conversation on our way to Ikea. (Hey, if we were all the way in Overland Park, Kansas which is an hour and a half away, we might as well stop at Ikea for some lingonberry juice--which they didn't have!)
Matt expressed his underlying gut feeling that something is not right inside of his body and the realization that he won't get an answer for the pain he is experiencing. He is never able to forget about the cancer because the pain is always there to remind him.
He explained to me. "It's like me asking you to forget being pregnant, if you were pregnant. Would you be able to? Could you forget about the morning sickness, the fatigue, the aches and pains, the emotions, etc.?"
"Of course not," I replied. "When I'm pregnant, I'm constantly thinking about it."
It's hard to balance the feelings I'm feeling: the reality of the statistics, the hope that comes when I forget about the statistics, the sense of doom from the doctor, the knowledge of a loving Heavenly Father who cares for Matt and for me and our family, the possibility that Matt will die from this disease, and the enjoyment of this current period of health.
Since the appointment, I've had to talk to family and friends about it and pray about it. Tears will leak out of my eyes at inappropriate moments. But I know that doesn't matter. I'm just trying to process the information and learn how to balance the feelings: the knowledge and the hope.
I texted my friend with a realization which I later recognized was an attitude of submission. "I don't need to fight against it as a possibility, that he might die from this disease. I've had a warning. His gut feeling is that something is not right. He is aware of it constantly because of the pain. His doctor is sooooo cautious about it. I think we need to come to accept it. Somehow. And then just be glad for his health till it happens. It feels morbid and pessimistic (to plan on the cancer recurring) but then on the other hand, God gives us revelation which we should listen to and no matter the outcome there's no reason to lose hope."
My dad has mentioned several times to us, especially at the beginning of this ordeal, that all we have to do anymore is submit to His will. I think I'm starting to get it. I can try to convince God that my plan is better, that I love Matt and I need him to stay healthy, that Klaus will be devastated without his Daddy, that it's unfair to Matt's mother to take another son away early, but I recognize now that all of that is a feeble attempt by me to control what isn't mine to control. I must let God be in charge of what is His to give and simply show gratitude for each and every precious moment of life.
We will make the effort now to live our lives fully, to make family memories, to take family vacations. And I will pray that my heart can open to accept God's will and praise Him for His blessings. There is a sense of peace that settles on my mind and heart when I do in fact submit my will to His.
