Myeloma, Party Of Two: It’s A Marathon, Not A Sprint
During my husband Daniel’s last specialist visit, I noticed a young couple sitting in the waiting room that I hadn’t seen before. They appeared to be in their late thirties and were nicely dressed, like they had just come from work. They looked ill at ease with their environment, as if this was all something new for them.
Since the woman’s plastic bracelet matched my husband’s, I could guess why. She sat there stoically, with her hands folded neatly in her lap. Her posture was a portrait of calm, statuesque equanimity. The only thing that gave her away was her eyes, which furtively glanced around every time a patient was called to the treatment area.
Her husband, on the other hand, had difficulty sitting down for very long. He would pop up for a magazine, sit down, and bounce his legs as he flipped through five or six pages before hopping up again for another one. It’s possible that he had already read that month’s issue of Field and Stream, but I doubted it.
On the third hop up for a People magazine, he tripped on the chair beside us and might have landed in my lap if I hadn’t braced his fall. Embarrassed, he returned to his seat nearby and apologized, saying that he was a bit preoccupied. His wife patted him on the back and smiled, saying “Just a bit?” We all laughed. Dan and I assured him that everyone in the waiting room could relate, and not to worry.
From there we began to chat. Indeed the wife was newly diagnosed with multiple myeloma, and the couple had returned that day to get more details about her disease from her labs, bone marrow aspiration, and CT scans.
Her story was a fairly common one. She had gone to her primary care physician with pain in her back. He performed x-rays and lab work, and sent her to a general oncologist who broke the news. “You have multiple myeloma,” he said. That day he scheduled her to begin treatment just a couple of days from then.
It was all moving too fast for her, she said, especially given that she didn’t even understand what she had. At a friend’s urging, she had made an appointment for a second opinion, and that is how she ended up in the waiting room at M. D. Anderson.
The first thing we did was congratulate her on making the decision to come to a myeloma specialist.
We knew the myeloma specialist she was scheduled to see, and we told the woman and her husband about his expertise in the field. We also said that we liked his bedside manner and good communication skills. They agreed that they had already had a better experience in one visit with him, than the rushed, “take no prisoners” approach of the other doctor, who had not done the level of diagnostic testing that she had received here. Her new specialist had also taken the time to explain what the treatment options were, and that good outcomes were possible with those options today.
The real benefit to working with myeloma specialists, I explained, is that treatment is customized to the patient’s needs. We discussed how important cytogenetic testing was for an individualized treatment plan, and how her bone marrow aspiration would reveal the keys to treating her myeloma in targeted, specific ways.
We also mentioned another benefit of coming to a major cancer research center, which is the opportunity to participate in clinical trials testing novel therapies that will continue to redefine how myeloma is treated.
We explained that Dan had participated in a clinical trial of PVX410 in 2013 that may have contributed a year of stability to his smoldering myeloma. Since 2014, his free light chain levels have been creeping up, but so far, we explained, he is still bone lesion free and not in treatment. While we can’t be certain that it was the clinical trial drug that caused the stability in his smoldering myeloma, we are thankful to be in good hands and feeling optimistic.
The point is, we told them, each case is different, and you do yourself a big favor by going to specialists who stay on top of the latest research, have access to clinical trials, and work with myeloma patients every day so that they can recognize the signs when treatment needs to change.
As we prepared to leave, Daniel left them with some advice that had helped him when he was first diagnosed with smoldering myeloma. Daniel said,
“When I was first diagnosed, it was tough. I didn’t know what I didn’t know, you know what I mean? All I knew of cancer was that you got a tumor, cut it out, did chemo and radiation, and hoped it didn’t come back. But, how do you cut out your plasma cells?
“The best advice we received came from my internist, who had done his internship here. He told me that if you’re going to have cancer, myeloma is one of the better ones to get. He talked about the advancements that had been made in the field since he had begun his career in medicine, and he joked that statistically, I was more likely to die in a car accident than I would from myeloma.
“He then told me something that I’ve remembered ever since. Having myeloma is a marathon, not a sprint, he said. You’re a young man, and you have your whole life ahead of you. Make smart choices. Take care of your health. Follow the advice of your doctors, and be strong. You’ve got a long way to run.”
As we said our goodbyes, we wished them well. They seemed to be more at ease and grateful for the talk, but I think we were the ones most blessed by the exchange. The couple reminded me of us three years ago. Others had made such a difference for us along the way. It felt good to pay it forward to a fellow marathoner.
Tabitha Tow Burns writes a monthly column for The Myeloma Beacon. Her husband Daniel was diagnosed with smoldering myeloma in 2012 after initially being told he had MGUS. You can view a list of her previously published columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Thanks Tabitha for the column. Your description of a waiting room is so apt!
Thanks so much for the comment, Nancy! I know that you've seen your share of them. I hope that all is well in your world! I look forward to reading your next column.
My husband was also treated at the same cancer center you are going to. I wished you hadn't given that couple so much hope, which was also given to us along with all the rosy scenarios that never materialized in the 4 years he was treated there, therefore when they refused to continue the protocols after being told that there was almost unlimited drug combinations and clinical trials, it never happened. I was even shouted down by the PA when I questioned the lowering of the Pomalyst dose, which at that time had him close to remission, after reading study results showing that it would not work at the dose she was going to recommend to the oncologist after my husband said that the neuropathy had moved up to his knees but preferred coping with it than reducing the treatment.
We asked, after that confrontation, for my husband to be treated by the head of the department, who accepted to do so. We realized that this had been a big mistake when he told us that he read my husband's whole file, because he hadn't treated him from the first day, 8 months later when the myeloma was starting to get out of control. All the wonderful almost miraculous treatments and clinical trials that we were told would be available to him no longer were. Instead we were asked by his PA, not him, if we had started researching hospice care.
We had been living at The Rotary House for the past 2 years because the first oncologist admitted to us that she had never been in contact with his oncologist in Austin after we found out that the myeloma had returned with a vengeance after achieving a stringent complete response from his stem cell transplant. We were told in their palliative care unit that he could not have hospice care at The Rotary House attached to it because the cancer center is not a hospital but a center that is all about "Cure" not "Comfort," therefore he had to leave, which we refused to do. We were constantly harassed for 2 weeks, by our nicknamed "ghoul squad", from 8:00 am to 5:00 pm to help us find hospice care, which my husband refused to do because of his bad experience with his father. Be forewarned - once the decision was made to stop all treatments, they wanted to get rid of him and close or transfer his file to anybody ASAP - they do not want patients to die in their care which would raise their death statistics.
2 doctors told my husband that he was so lucky because he was going to have a beautiful death when his kidneys were going to fail. Well, his death was horrific, he became blind, had bloody thrush all over his mouth, and could not breathe unless sitting up and they left him sitting for 2 days along with giving him very low doses of pain killers until he died most likely from choking on his blood. We were lied to and wished we'd gone to Arkansas instead! My husband was simply a number amongst other numbers - no humanity at all from their 2 supposedly best experts in MM. Never got a word of sympathy from them either, which proves my point about being a number!
Suzanne, I cannot imagine how terrible this experience must have been for you both. I am so sorry that this happened. I thank you for sharing your story, and I hope that it serves as a good reminder to us all to fight for the best care we can, just as you have done for your husband. I hope that you find peace in the days ahead, and I wish you well.
Tabitha
Hi Tabitha
Thank you for a great heartwarming article. I think many of us can identify with the first experience in the waiting room and then being the "mature" patient months after diagnosis.
To Suzanne - I am truly sorry about the passing of your husband. I am equally disturbed by your husband's treatment experience and sadly, I have heard it before with two of my own relatives and one of my dear friends. In our case, the treatment occurred elsewhere. Since my husband was first diagnosed with multiple myeloma we have noticed and become aware of the disparate treatment for cancer across the country. In a country as great as ours, it is sad that not everyone gets the treatment they want or need. Again, my heart breaks for you and what you have had to endure and I pray that you find peace in your life.
Thank you Tabitha and Patty for your kind words of sympathy. They comforted me a lot upon my return from this afternoon's "Time to Remember", a memorial service held at the cancer center in honor of patients who have died this past year. I saw it announced in their weekly newsletter and wanted to be there when they called out his name. Upon my arrival, I was surprised to learn that everyone there had gotten an invitation to attend and were all asked to bring a photo of their deceased loved ones, which a volunteer displayed on a long table at the front, facing the audience. They never sent me the invitation and I was heartbroken when his name did not appear in the booklet containing the list of names of the deceased as well as it being omitted on the memorial wall, so I wrote his name on the memorial wall. before I left. That hurt a lot, so reading your answers brought me some solace in knowing that some people do care therefore you helped to lift up my spirits on this dreadful and very disappointing day1
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