Update 2024-0217

Holding Steady with Joy, Making Big Decisions

Find and Spread the Joy

As we’ve done before, Jackie and I overnighted in Seattle as a tender pause before a visit to the cancer center. We typically gift one another with fond memories rather than things, and this trek was just such an experience. We tried a new hotel—the Seattle Marriott Waterfront. The location and the accommodations were exactly what we hoped for. We love a water view, and the panorama from our room did not disappoint. Breakfast was the surprise best part of the trip.

Morning view from our room. A ferry brings workers from nearby islands to Seattle. So many scenes of this in Grey’s Anatomy.

We had just settled at our table — me sipping a warm cup of tea and enjoying a bowl of oatmeal, Jackie savoring her coffee and indulging in a buttery croissant. Amid our quiet morning routine, a trio of striking women entered the room, placing their belongings at the adjacent table before gracefully navigating toward the complimentary spread of morning cuisine. Their presence radiated confidence; they commanded the spacious room with their elegance. Clad in vibrant casual attire and slippers, I had the impression they were popping down for a quick bite before getting ready for a grand day ahead. (I later discovered my intuition had been spot on.)

As one of the women, Rachelle, passed by me, she exclaimed, “I love your hair!”

I returned, “I love your headwrap — and your dress.”

“Oh my moo-moo,” she said and then patted her head, saying, “I wear this to cover the hair that’s trying to grow back after cancer.”

I mirrored the gesture, saying, "Yup, my style is cancer-inspired, too."

At that moment, two strangers became kindred spirits on a shared journey. "It's funny," I continued, "I've always admired headwear like yours, but I'm hesitant to wear it myself."

Rachelle looked at me curiously. "Why can’t you?"

"I'm mindful of cultural respect. I don't want to misappropriate what isn't mine to embrace," I explained.

Rachelle's sister, Rashawn, overheard us as she approached with her cup and plate and quickly joined our conversation. Rashawn, a larger-than-life embodiment of irresistible charm, vivacity, and loving-kindness, injected an extra dose of energy into the moment. Amidst the banter, she declared with a playful spirit, "If you have to, you just tell people that a sista in Seattle told you to wear whatever you want on your healing head.” Her words resonated with encouragement and a sense of sisterhood.

Jackie and I learned the story behind the vivacious trio—sisters Rashawn and Rachelle, accompanied by their Aunt Charlotte. They were on their annual adventure trip to a new location somewhere on the globe. This is a tradition they began seven years before to honor the memory of the girls' late mother and Charlotte's sister, who died of cancer. With her exuberant spirit, Rashawn said, “This is our way of celebrating my mother’s life. She finished her race and received her heavenly crown, and we walk in her footsteps the way she liked to travel all around the world.”

A momentary hush fell over them when they discovered my name was Mary, immediately followed by expressions of shared understanding: "There ain't no accidents. My momma’s name was Mary. Uh-uh, this right here ain't just some coincidence."

Rashawn told me that she feels her mother’s spirit in how she lives her life—sharing smiles, spreading joy, and being a blessing to everyone she encounters. She touched my heart deeply and reminded me of the importance of finding and spreading joy.

Rashawn insisted, "Promise me you'll send me a picture of your new headwrap." We exchanged Facebook connections, sealing a newfound friendship in the digital realm.

During those brief moments when our paths came together, a profound connection blossomed, punctuated by shared laughter and infectious high spirits. When it was time for us to go, we gathered for a couple of “us-ies” and were joined by passing strangers who could not resist the fun. Carrying the blessing these women added to our morning, Jackie and I headed to the clinic with renewed lightness in our hearts and an extra spring in our steps.

In minutes, we were friends. Passing strangers could not resist the zaniness, and even the server joined the frivolity.

At the Clinic

The clinic check-ins followed a reassuringly familiar routine, with only two appointments scheduled for the day.

Concerns raised by the recent PET-CT scan reports regarding my thyroid turned out to be watchful matters. The endocrinologist is not fretting, so neither are we. The next follow-up is scheduled for December.

In the oncology department, we delved into the details of my post-transplant recovery, marking 145 days since the procedure. Persistent low red blood counts explain many symptoms, notably my enduring fatigue. The prescription is patience.

My bone density scan looked good, indicating only a minimal elevated risk of osteoporosis-related fractures. Myeloma can weaken and even poke holes in bones. I do have some holes in my bones, and they are not in areas that are likely to break. The good news in the bone density scan is that I can hold off on bone-strengthening medications for now, sparing me from potentially serious side effects associated with such drugs.

Immunoglobulin Watch

My immunoglobulin counts are getting better but are not up to snuff yet. This leaves me at a heightened risk of infection. Fortunately, two IVIG (intravenous immunoglobulin G) transfusions have had some positive effects. Another is scheduled in a couple of weeks.

My curiosity was piqued when I noticed that IVIG is called a “transfusion,” not an “infusion.” I researched and unearthed some fascinating information. As suspected from the term "transfusion," the IVIG substance is derived from human blood, specifically plasma. Intriguingly, this plasma is pooled from thousands of healthy donors. The result is a vat of super-concentrated and diverse antibodies, a robust defense against many potentially infectious organisms. In my simplified understanding, IVIG seems akin to a transplant of immunity. My deduction is born from my optimism, not science.

We will continue to monitor my immunoglobulin levels and do transfusions as needed. I hope my body will kick in and elevate my immunity to reasonable levels rather than being beholden to the magic elixir.

Covid & Flu Vaccines on Hold

My lifetime of vaccines, including recent ones for COVID, flu, pneumonia, and shingles, were wiped out during the stem cell transplant process. I will get inoculated with adult vaccines and “baby shots” (polio, mumps, measles, etc., etc., etc.) when my body is more recovered, about a year after the transplant. There is a crucial exception for COVID and flu vaccines. It is recommended that these be administered as soon as possible because it's tough for an immunocompromised system to fight off these diseases. It’s like the invaders enter the town square and find the villagers unarmed. Despite this urgency, a dilemma exists – the efficacy of the vaccines can be compromised by low immunoglobulins. I am strategically delaying reloading my COVID protection, hoping for a robust vaccine response later. Once the vaccine regime starts, I will get a monthly COVID vaccination for three months and a booster at eight months. After that, who knows?

While we wait for the optimal time for me to vaccinate, Jackie and I will maintain the vigilance and diligence we cultivated over four years. As "no-vids," having successfully avoided contracting COVID thus far, we maintain a cautious approach but still live our lives—clean hands, masks in public, avoid sick people, crowds, and poorly ventilated areas, and socially distance. Our commitment to prioritizing our health is unwavering. Jackie and I have been known to exit an elevator mid-trip when yahoos push in, saying, “There’s plenty of room.” No, really, there’s not.

Evaluating Maintenance Treatment

The recommended myeloma maintenance treatment clinical trial has opened as anticipated, and we received the consent form. It is 30 pages of scary language. Jackie and I are reviewing the document and compiling a list of questions for clarification to help us make a well-informed decision.

From the volume of myeloma-specific newsletters in my inbox every day, it seems there are many maintenance treatment options, yet my care team offers only one and a variation of that one as the “standard of care.”

Labor shortages exist everywhere, including in the healthcare industry. It is obvious that my care team is over-taxed, and I know there are limits imposed on how much time a provider can spend with a patient. Though my providers have often stretched those limits, the appointment then becomes a stressful rush that leaves me with unanswered questions, concerns, and understandable anxiety. I am sure my providers are dedicated to the best possible care, but I’m not convinced there is enough time or the bandwidth to consider each patient’s unique needs and solutions beyond the “standard of care.”

Is “good enough” treatment good enough?

My experience has been anything but “standard.” The course of my cancer treatment has been riddled with “rare” side effects and complications that have resulted in the withdrawal of medications I’ve needed for years and the addition of other medications to mitigate the risks of treatment. These medication changes impact my functional daily life and have potentially life-threatening consequences. My body feels out of balance and teetering. This situation is reminiscent of chasing the gauges in an airplane. Over- or under-correction can lead to disaster.

I am not yet comfortable with the maintenance treatment recommendations currently on the table. They seem like one-size-fits-all solutions that, for me, involve significant trade-offs. You’ve likely heard the list of risks recited at high speed in a monotonous tone at the end of ads for the latest miracle drug. Have you ever wondered, “Who would take that drug?” Cancer patients wrestle with those lists of risks for suggested treatments and must decide which risks they are willing to accept. All things considered, what is your best shot? “Studies have shown,” and it's just plain common sense, that a treatment is more effective when the patient is “all in.” I’m still waffling.

A tangle of complicated options appears in my inbox each day that my care team understandably does not have the time to discuss. Nuanced considerations of side effects accompany each option. Dr. Google and even his bright new assistant, Chat-GPT, are more overwhelming than helpful. It’s second opinion time. Jackie and I will work with an impartial cancer treatment navigator and possibly other myeloma experts to gather all the information we need. We aim to decipher the intricacies of available solutions as they relate specifically to what my body has told us already and become confident and committed to an optimal path for keeping my myeloma in remission for as long as possible while affording me a good quality of life.

One way or another, I expect maintenance treatment will begin in a month or so.

Jackie and I continue to be grateful that I have attained remission and for the overwhelming abundance of love, care, and concern that envelops us. This constant support is a palpable presence in our daily lives, and we feel truly blessed by each and every one of you.

May you stay safe, be well, love much and be loved, and have a life of ease.  💕

With all our love,
Mary & Jackie