Lessons on the Road

It was just over a year ago that we drove to the NIH Clinical Center to look into treatments for Ken’s cancer. In April 2022, it was determined that he was not a candidate for their current trial. We found a new oncologist and Ken started treatment. In the months since then, he had chemo, I had chemo and radiation, and we are both learning how to navigate the world of health care with a serious diagnosis. And yes, a year later, we ended up back at NIH because they had a new protocol that was a good fit for Ken now. It’s been a wild ride…

We’ve both continued to try and work full-time. Some weeks are more “full” than others, to be honest. But we are fortunate to work for companies who have supported us and provided flexibility to take the intermittent FMLA leave we have needed. (It is NOT unlimited leave with pay, mind you, but at least we both have jobs. And health insurance.)

I was reflecting with someone on all that we’ve learned over the last months. These are lessons I didn’t sign up for, to be certain. They are lessons that ring true with others who have cancer or a chronic illness. In no particular order, here they are…

Sometimes you are a random statistic. There is no genetic rhyme nor reason to our cancers. It just happened. The germline studies did not show any genetic predisposition to our diagnoses. We just hit the cancer jackpot. Yay. I guess.

There are times we have to live with ambiguity. Tests tell us some things, like whether blood counts are better or worse. The reasons why they are normal/abnormal aren’t always clear. And they don’t tell us what is coming down the road next month or next year.

People who have never had a chronic disease or a life-limiting illness need to listen more and offer advice less. Seriously. If you only go to the doctor twice a year, if that, please save your platitudes. I haven’t punched anyone’s lights out, but I’ve thought about it.

We need help but don’t always know how to ask for it. The folks who signed up for meals, drove us to appointments, helped with a household task… they were rockstars. But there were times I had a big job that needed a stronger person, or at least one that could climb a ladder without being a fall risk. I didn’t know who to ask. And I didn’t have unlimited funds to pay someone. Friends from Tai Chi and church came and helped with the heavy lifting (literally) and it was such a relief. My siblings showed up on several occasions and took on all sorts of chores, from cleaning out the moldy produce in the fridge, to laundry, to mulching, to reorganizing the garage! Amazing!! A friend came by and saw we had a lot of invasive weeds, and she pulled all the wild mustard from the front yard. A coworker showed up on a HOT hot day and helped pull brambles and ivy. A neighbor brought us dinner for the night of every single chemotherapy session for Ken and me (that’s TWELVE dinners!) and she had her own family’s needs, including preschoolers, to handle. We had all kinds of needs… but didn’t know it. They saw and offered help, and we accepted. Gratefully.

The healing process from cancer treatments and surgery is not linear. Some days I am OK. Other days, the pain, digestive issues, neuropathy, etc drag me down. The energy drain on the body is real… and fatigue hits HARD at the end of the workday. I can feel the stress on my body if I stand or walk more than normal. Which sucks. But it is what it is. And I’m constantly learning what I can and can’t do based on my energy level for the day. (If you haven’t ever learned about spoon theory, here’s a great link!)

We have to weigh carefully the risks vs the benefits of social events. Tai Chi for Ken is a mental and emotional lift. Church for me provides spiritual uplift and affirmation of God’s love for me. But each time, we have to mask and stay masked, even when most people around us are not. You may be cavalier about COVID now, but we cannot be.

Despite everything we have done and every medication/treatment we have been given, remission is not a guarantee. Currently, I have NED status (No Evidence of Disease). Because of the high grade cancer I was diagnosed with, I have a high risk of recurrence. I am not demonstrating a lack of faith by saying this, but I’m speaking Truth, and thanking God for every day I am given. This is my new reality.

Prayers help more than you know. I had a “pod” of people faithfully swimming through this journey with me. They are still praying, even though my prayer requests are less frequent. Knowing there was (and IS) someone praying for me with intention and purpose was incredibly comforting.

Little gestures go a long, long ways! Prayer shawls, handmade by people we’ve never met. Gourmet ice cream delivered to our front door. Homemade Belgian waffles and fruit compote. Fresh flowers. Homemade soups. YARN! And a new pattern to try! Home cooked meals and DoorDash cards. Notes, emails and texts. The list goes on (and I’m forgetting someone and something… truly… thank you!)

I could go on… but I hope all this makes sense to you. These are lessons on the road that I didn’t know before I started on this cancer journey, first with Ken’s diagnosis, and then mine. But more than these lessons, I have learned…

The present is just that… a present. Each day unfolds and in it God unwraps another day of reminders that I am loved. And you are, too. Celebrate with me!

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