Tom and I are trying to decide how to celebrate Aug. 28, his fifth birthday post-stem cell transplant. We feel very blessed and a bit stunned. We had hoped that we could get here. Now that it’s occurred, we aren’t sure how to react.
We have been pushing our faith in ourselves and stretching our resilience, pleading with the universe, meticulously grilling Tom’s docs, and reading everything we could about lymphoma, cancer recovery, nutrition, free radicals and immuno suppression for more than five years.
Now we leave that behind and adopt the daily irritants of healthy people’s lives: The bathroom needs to be cleaned, we both need to lose that 10 pounds of celebratory weight gained since February’s declaration that Tom had no evidence of disease. We need to focus more on our daughters and plan our retirement.
Plan our retirement? Are you kidding me? We haven’t planned anything like that for more than five years. Tomorrow was our only goal. Now we are trying to figure out how much money we need to support us until we are 95. Tom spent yesterday morning reading about longevity policies because we can’t qualify for long-term care policies. Longevity plans help you pay for costs when you are post-85. Huh? We are wondering how we’ll buy groceries 25 years from now? What a change.
Now that we feel less shadowed by the plague of the Big C, we are finding smaller health concerns rule our lives.
Last Sunday, Tom woke up deaf in his left ear. After the usual hi-jinks with the medical system and a hissy fit by me, he got in to see the specialty ENT doc Tuesday. He should have been seen Monday.Sudden hearing loss can be a sign of stroke and friends will remember Tom had a stroke in 2005. The deafness turned out to be this bizarre syndrome in which you lose your hearing with a 40 percent change of it returning. No one knows why it happens. It’s called Sudden Hearing Loss.
We were very depressed for a couple of days. I couldn’t talk about it. I felt so sorry for him that with all the disabling side effects from chemo, he now has to deal with muffled clanging on his left side. He said it sounds like a machine is whirring all the time.
“This really sucks,” Tom told daughter Kaitlin Wednesday.
By Thursday we were back. I reminded him that he had about a 10 percent chance of beating cancer. For us, a 40 percent chance of anything is good odds.
And good news: We have two ears!!
We are spending a lot of time answering Tom’s “What did you say?” queries and running to find him if we need to tell him something so we can talk into his right ear. He called the golf course Thursday morning to make a tee time and was very frustrated that they weren’t answering the phone. I took his cell phone from the deaf left ear and put it to the hearing right ear.
“Oh,” Tom said.
He could then hear the course scheduler saying, “Hello, Hello?”
In a Monty Python kind of way, we find this darkly entertaining.
So we adapt. Tom is on strong doses of steroids for 22 days in the hope that some of his hearing comes back. Docs assure us that the chemo didn’t prompt this, and it can happen to anyone.
We have heard that one before.
We are trying to figure out how to get this out of our heads and focus on the blessing that he is still here. Olbrich Gardens? Dinner out? A new golf club? Five new golf clubs? (They arrive weekly at our house. He’s now buying old ones for $18 on EBAY, fixing them and giving the away.)
Saturday night we went to the Ozaukee Washington Land Trust dinner to honor Dan Dinneen aka Dino, president of that group. The acres of restored land right on Lake Michigan was a paradise to hike and dinner under the tents amid the hills with the lake lapping nearby was a real treat. (See the photo of Tom on the beach!)
We learned there about the sudden passing of my old friend, Mark Torinus, 60, who worked with me in Menominee, Mich. We start stem cell celebration week by visiting with Mark’s family Sunday night. We have such profound empathy for his widow Maryclaire.
We’ll let you know how the all-important five-year birthday rolls out. I find myself on the verge of tears. I’m not sure if it’s Mark’s passing, Tom’s deaf ear or the relief that I am no longer living on pins and needles.
Mark’s story reminds us that any of us can pass over the rainbow anytime anywhere. I need to keep that in mind as we let the five-year mark wash over our many sacrifices that led us to cancer recovery. We know we did not earn a pass from disease and pain for the rest of a long life just because we survived brain cancer. However, we will take a deep breath Wednesday with the knowledge that it’s unlikely (40 percent, 80 percent?) we will spend the next year poisoning Tom in the hope that he can be with us one more day.
Read more at caringbridge.com/visit/tomfoley