Travel, Hope, & Surprising News

OBX to Blue Ridge Mountains

I had privilege of spending two weeks in North Carolina this September. The first was at NC’s outer banks. We have enjoyed the beach with our children and theirs for 15 years, ever since the birth of our first grandchild. The grandchildren have grownup with this yearly respite with their cousins, enjoying beach, sun, and sand.

It was only a few months back that most of my children doubted the likelihood that I would be able to join them this year, but I was there, although not riding the waves or competing in the tennis matches. I was lucky to carry a beach chair, as all my loved ones were making sure I did not over extend my fragile bones.

From there, Yvonne and I traveled over 500 miles west to the mountains where my younger brother had arranged a sibling reunion. My oncologist allowed me to skip chemo for the week. Since I was told I could bike, but not fall, activity was limited. But I did survive a four-mile hike complete with waterfalls.

Medically, my most pressing issue was a form of blepharitis, a symptom of one of the chemo drugs. The eyelids become red and swollen, sporting an Emperor Palpatine appearance. A trip to an urgent care in OBX, and the ER in Asheville, interrupted activities, and I rested more than usual, but I was present.

Hope and Strength

A question asked at the sibling dinner table was: “What is your favorite time of day?” I was surprised when I answered: “It’s really nice to lay down at night.” My lifetime high-energy ADD personality has never had that as an answer. I have lived almost perpetually animated, upbeat, and optimistic. Hope has been the flag flown from my castle.

I reflected that since this cancer journey started, the experiences of life — mental, emotional, and physical — have been sedated or ‘tamped down’. I enjoy sunrises and cloud formations, hummingbirds and running streams, good food and the company of friends, but they don’t move the experience meter as they once did. Whether due to pain, drugs, or chemo, much energy is spent in pressing through each day. Hope is strained come nightfall.

I tuck this away for when I interact with others in their suffering.

I Didn’t See This Coming

Tuesday Yvonne and I met with my oncologist. The plan previously had been to finish a fourth month of chemo, and prep for a stem cell transplant in November. That is what we’ve been doing, including strategizing how to pay for the $40-50k out of pocket for the procedure.

A stem cell transplant is not pretty. They take out your T cells, hit you with massive chemo to clear out your bone marrow, and then put your T cells back in. It requires 17 days in the hospital and months of monitored recovery with many side effects.

So, imagine my shock when Dr. Ajebo said, “I don’t think you need a transplant.” I didn’t see this coming. Here’s the three numbers he follows (pics attached):

• IgA has come down to lower than normal. Very good.
• M Spike was down to 0.1 two weeks ago, and might be zero by now.
• Lamba Free Light Chain has responded nicely and may be in range by month’s end.

If levels good enough for an MRD negative status, there is no need for stem cell.

MRD = Measurable Residual Disease. They look at 4 million cells in the bone marrow and identify the signature myeloma cell. If they don’t find that signature on another cell, you are MRD negative, or functionally cured.

I didn’t see that coming.

You want a sustained MRD, so chemo would continue for eight months, but that is minor compared to hospitalization.

Thanks & Prayer

May I again say, “Thank You!” to all of you who have carried us this past six months with prayer, encouragement, service, gifts, finances, and more. We are still reeling from the experience.

And may I request prayer presently for two friends, Joe Eshbaugh and Joe Flaherty who are facing cancer diagnoses much more severe. Much love!