Night Reflections
Page 14
Can I make it until the morning feeling the way I do?
Remember, he saved her life, I told myself.
But how could this happen?
Nancy grabbed my arm as I passed by her bed: “Relax, Winnie. Sit beside me.” Her eyes had regained their sparkle. And they were dry. Nancy laughed, “Look at you. I’m the one with the leukemia. We’ll be fine.”
Nancy poked me in the ribs until I begrudgingly laughed. Then she continued, “All right, I’m the leukie, not you. And I’m feeling pretty good, now that I think about it. Dr. Peterson said that with a transplant, my chance is 50–55%. Those are better odds than the 40% from Dr. Morton. He also said it didn’t matter that Linda and Jim aren’t able to donate marrow if we use the special procedure he plans. What did he call it?”
Before I could answer, Jayna did: “A mini-transplant, Mom.” (Jayna watches Jeopardy every day with Nancy. I believe it’s part of their closeness—part of their ritual. So she has lots of practice answering questions rapidly.)
I confirmed, “He did say that, Nancy. And it was a term I didn’t recognize. I have lots of reading and research to do.”
“Remember, Winnie, you’re my husband—not the doctor.”
“I know,” I answered.
(I didn’t add what I was also thinking—more than you can imagine, my love.)
Summary: This morning I shared part one of “how our lives are once again jumbled and twisted in every direction.” I will compose part two early tomorrow.
Our best,
Winnie
The Numbers Don’t Add Up, Part 2
August 13, 3:31 a.m.
Dear Friends and Family,
When Dr. Morton arrived the morning after our conversation with Dr. Peterson, his customary playful demeanor was absent. The lines around his eyes were tighter and there wasn’t even a hint of a smile was on his lips.
“I understand Dr. Peterson from the transplant team came by yesterday. I’ve also heard he recommended a transplant right away.”
News travels fast on the cancer floor.
Dr. Morton’s statement is a testament to how deeply the oncology staff cares about all aspects of their patients’ health. (The oncology floor functions like a big family.) After Dr. Peterson’s visit, several on our team had noticed the dramatic, though transient, change in our family’s attitude and disposition. And not only had they offered support, they apparently had related our concerns to our doctors.
Nancy smiled, something I was unable to do.
“He did. We were surprised.”
“I’m sorry that happened, Nancy. I expected to talk to Dr. Peterson before he talked to you.”
I chimed in, “It was distressing, Dr. Morton. His numbers were entirely different from the ones you gave us. His plan was entirely different as well. Nothing he said came close to what we had heard from you.”
“Winnie, I’m sorry that I didn’t talk to him first, and then you. I would have prepared you and Nancy had I known what he was thinking. Sometimes medicine is messy.”
Messy?
That’s for sure.
Still I had to respond: “Can you explain how you’ve advised us 30% to 40% for a survival estimate, yet he said 10–15%” (I refrained from adding, “To me, those numbers aren’t even in the same galaxy.”)
“We interpret the numbers differently. I can stand by mine, though I understand his conclusions”
What does that mean?
Doublespeak?
Oncology code? (Medical knowledge is often gray, but . . .)
“Dr. Morton, at this point, numbers don’t mean much. They keep changing. We need advice. What should we do? Have you changed your mind on whether Nancy should get a transplant?”
“Well, Winnie, that’s a fair question. I had a long discussion with Dr. Peterson on the subject this morning. He told me the newest studies don’t support waiting, the way the old ones do. If Nancy has a relapse of her leukemia, it will be harder to get her back into remission while taking a heavy toll on her body. And she is fifty-seven years old. The chance of bone marrow success goes down as one approaches sixty. On the other hand, Nancy’s leukemia has been very responsive. Plus, getting a transplant is tricky at best. It makes our chemotherapy treatments feel like a walk in the park.”
How could a transplant be worse than our first hospitalization?
Remember, I told myself, he saved her life.
“Shouldn’t we have been looking sooner for a match if we were even thinking about a transplant? Maybe we’d be ready now and not have to go through another chemotherapy course while we’re waiting.”
“I suppose we might have saved a week or two, Winnie. But it may take months to find an unmatched donor. In the big picture . . .”
In my small picture, every week counts. Every day counts!
Our meeting ended congenially enough, with Dr. Morton adding he forgot to mention that Nancy’s pre-leukemic good health was a positive for the transplant side of the ledger and telling us that good health helped her with the chemotherapy, too.
He also had saved an encouraging note for the very last.
“I do have good news. You can go home tomorrow if Nancy’s blood counts continue to rise.”
Summary: Though the rebound of Nancy’s blood counts will allow us to return to Woodland, a “homework” problem that may not have a clear answer has become part of our “vacation.” Should we consider a transplant?
Love,
Winnie
It’s as Clear as Mud
August 16, 11:11 p.m.
Dear Friends and Family,
A significant portion of our first week home has been spent negotiating the “insurance quagmire” as we consider if Nancy should attempt a bone marrow transplant, or BMT (also sometimes called a stem cell transplant). There are multiple forms for the many doctors to fill out, permissions and releases that are needed by the hospital and insurance company, and a never-ending myriad of phone calls. (The list is long, but I am persistent to say the least, and I can’t help but wonder how someone with less understanding or determination can be expected to navigate such a detailed process.)
Even more important than the paperwork and financial aspects related to Nancy’s hospitalization has been the identification of a suitable donor. (I believe I mentioned in an earlier note that Nancy, her brother Jim, and her sister Linda had their bone marrow “typed.” Unfortunately, neither Linda nor Jim’s bone marrow match Nancy’s.)
Once I obtained the approval of the insurance company to proceed, the Human Lymphocyte Antigen (HLA) pattern (type) used to identify Nancy’s unique bone marrow was sent to the National Marrow Donor Program. The process is sort of like a computer “dating” match for blood cells. After sending in the final paperwork yesterday, we only had to endure one restless night worrying. Today, we learned there were twenty-one potential donors. (Keep your fingers and toes crossed.)
Now the potential bone marrow donors will be contacted, questioned again about their present health and continued willingness, and then retested for the next set of more specific blood compatibility markers. This next phase can take from three weeks to six months. The process is a lot like Nancy’s blood talking to the donor’s blood and having several “dates” to see if a serious relationship is possible.
In the interim, if we decide to proceed with a transplant, the next question is where to do the procedure. In “transplant-speak,” Nancy needs a MUD procedure. A MUD transplant is not dirty in any way; rather MUD is the abbreviation for matched unrelated donor. Only one local facility near Park City performs MUD transplants—the Huntsman Cancer Center, which is part of the University of Utah in Salt Lake City. Huntsman is a smaller transplant center than, for example, the Hutchinson Cancer Center in Seattle or the facility in Houston at MD Anderson Cancer Center.
So I have a new project.
What are the cure rates at these three locations?
What type (mini vs. full) of MUD transplants should we consider?
Meanwhile, Nancy will undergo another round of chemotherapy to ensure she stays in remission while we figure all this out. And we will return to the “penthouse” floor of LDS Hospital in another six days. (I’d be struck by lightning if I told you I am ready.) In between all these tasks, our time at home has been filled with togetherness, fun, and peacefulness (when we are not thinking about the future).
Nancy has been exercising, eating, and mentally preparing for what lies ahead, while I have been constantly on the computer and phone. In all honesty, I am a wreck trying to sort through our next challenges, but Nancy has a different take: “I’m ready for the next round. After all, what’s the alternative?” Somehow her sense of humor will drag me back to the rollaway on the eighth floor, smiling and willingly.
Lastly, I would be remiss by not mentioning that we are fortunate to have some physician cousins on my side of the family. (Thank you, Sam and Richard.) Invaluably, they are helping me contact out-of-state experts for their opinions on which procedure might be best and where to obtain treatment. I suspect the decision will not be clear cut and will require a certain amount of “best guessing” on what feels right.
Which is where all of you come in.
Your constant support and energy continues to give us the resolve to forge forward and the strength to choose a direction.
Summary: It has been great to be home with Nancy feeling so good. Especially since it has been time to decide if we should proceed with a transplant, what kind of transplant we should choose, and where we should have it.
Thanks and love,
Winnie
The Details Are a Little Muddy
August 18, 11:01 p.m.
Dear Friends and Family,
After my most recent letter, many of you have inquired about becoming a bone marrow (stem cell) donor. So this letter is specifically for you, though Nancy and I have no expectations of our friends. For everyone else, feel free to skip the details.
Here is what I have surmised from the growing pile of materials we’ve received.
Be The Match®, operated by the National Marrow Donor Program, is the largest and most diverse bone marrow registry in the world. It is a nonprofit organization dedicated to helping every patient get the life-saving transplant they need.
Joining the Be The Match Registry is easy. Just log on to their website at BeTheMatch.org, where you will find all the pertinent information about becoming a registered potential donor. You can even click “Join” to join the registry immediately by providing your birthdate and general medical information. When they ask for a promotion code, if you type in “Nancy” we will be notified that you have become a donor. A kit will be mailed to you that contains a couple of swabs to obtain cells from the inside of your cheeks to send back to the registry. From those cells, the donor’s specific immunogenic profile, called HLA typing, becomes part of a national database that can be accessed for patients needing a transplant. Donors between eighteen and forty-four are preferred and no financial contribution is required. Donors between forty-five and sixty can join, but a financial contribution of $100 is requested to offset the cost of the testing.
There are currently over twenty-five million people already registered in the program, and a Caucasian has a high likelihood of finding a match from the current bank of traditional HLA immunologic screening samples.
When a donor’s blood is tested and found to have the same HLA fingerprints, it is called a match.
When a transplant doctor requests typing for his patient, it usually takes only one day to check the central computer for potential matches, and when they are found, the names are then sent back to the requesting doctor and transplant center.
The doctor next asks the registry to contact the potential donors to see if they are still available and willing and to do further, more specific testing.
New antigens are discovered each year, and further testing refines an unmatched donor’s sample to see if it is even more closely similar to the recipient’s.
Additionally, a donor is screened for infectious diseases that could prevent a successful transplant—for example, HIV, cytomegalovirus, or one of the hepatitis viruses.
What is the chance you would be a match with Nancy?
It is rare that a non-sibling donor match has been discovered by having a friend’s cells tested. One of those times was in a tribal setting from a close ethnic group and therefore a higher probability.
So in reality, it is highly unlikely.
It is a testimony to your kindness and caring to realize that (any of) you have considered this process. And we are most appreciative.
If you follow this procedure, you might help someone like Nancy in the future. Also, more immediate help for Nancy and others with similar problems will occur with a blood or platelet donation that can be done in Nancy’s name. Patients like Nancy require multiple platelet and blood transfusion during the periods they are receiving strong chemotherapy.
But again, we have no expectations.
And we thank you from the bottom of our hearts just for asking.
Summary: Since so many of you have inquired about how to be a bone marrow donor, I’ve summarized how you might be able to help Nancy or someone like her.
With much love,
Winnie
The Large and Small of It All
August 19, 4:50 a.m.
Dear Friends and Family,
As promised, a few more words about the party we hosted last week.
When Nancy graduated from the University of Georgia with a teaching degree, she decided to take a year off to become a flight attendant and see “the world outside of Georgia.” She chose the international carrier Trans World Airlines (TWA) instead of interviewing with Atlanta-based Delta like many of her friends. Not surprisingly, TWA recognized a “quality” individual and immediately hired Nancy, thereby beginning a thirty-three-year career of travel and adventure while based in various cities such as New York, Boston, St. Louis, and Los Angeles. She definitely wasn’t in Georgia anymore (or Kansas for that matter).
During her first extended independent living experience, Nancy secured an apartment in the town of Long Beach on New York City’s Long Island, an easy drive to Kennedy Airport, where most of her flights originated. It wasn’t long before she and her roommate, Julie, made friends and decided to host a dinner party for two male coworkers. Decades later Julie told me an important detail about that night: “Winnie, it was probably the most embarrassing night of my life. Even though we cooked most of the day, we didn’t have enough food.” (Those few sentences still elicit hysterical and prolonged laughter from Julie and Nancy whenever they reminisce.)
On a tight budget, they apparently didn’t realize how much young men (or “boys” as they were deemed) can eat. Both Nancy and Julie kept retreating to the kitchen to find something, anything to add to their dates’ plates, which the boys all but licked clean. Nancy told me many years later that neither girl actually ate a bite so they could secretly switch their food to the boys’ plates.
I believe that one dinner party has easily doubled our family’s grocery bills over the years whenever we entertain. It is not uncommon to have a week’s worth of leftovers every time we have company, even after Nancy sends any remaining desert home with our guests.
You can only imagine, then, what our house looked like when Nancy invited people to visit us during her recent home “vacation.” Every small shelf or corner overflowed with chips, nuts, candy, cheese, crackers, and other snacks. Every coffee and end table accommodated brightly colored fresh flowers. Our dining room table and kitchen counters had countless entrees of fish, meat, potatoes, salads, and vegetables. Our bar was the main drink area, and not one person asked for a drink that I couldn’t provide in a moment’s notice. I know that we had leftovers for all our remaining days home and then some.
Still I had no regrets.
Each step of the planning, cleaning, shopping, setting up, and cooking was enjoyable. This was Nancy’s first face-to-face contact with most of her “local” friends. This was Nancy’s first contact with a “feeling” community.
The most ordinary tasks seemed almost special. Nancy’s declaration, while vacuuming the living room, echoed how Jayna, Jaret, and I felt as we whipped our house into “party” readiness. She declared, “I never thought I’d say this, but vacuuming can be fun.” (On her last visit home, Nancy had been too weak for such a task.)
The night before the party, after trying on most everything in her closet to select the “best” outfit, Nancy and Jayna took up most of our bed while they talked over final plans. “It’s like the night before the prom, Dadder. Mom is nervous.” Jayna kissed her mother’s head as we all twittered like children, alone together sharing intimate thoughts.
When 2 p.m. arrived the next day and her guests arrived at our doorstep, Nancy was glowing. Except for the brightly colored scarf that Jayna fashioned over Nancy’s now fuzzy head, it was difficult to tell that Nancy was just on a “time out” from her deathly illness. Everyone treated her normally, and for three hours she looked and felt that way. The only tears that were shed were by me, when I sneaked away to our bedroom, overcome by watching Nancy be so happy and so alive.
It was a momentous day—both large and small.
Nancy, in talking to my partner Joe Ferriter’s eight-months-pregnant wife, Jenny, inquired about what they were planning for childcare since Jenny was also a physician. Upon finding some uncertainty, she paired Jenny with our dear friend Mona, a retired preschool teacher who was looking for something to do part time.
Problem solved.
Typical Nancy.
Summary: The highlight of our time home has been the chance for Nancy to visit with friends while feeling good. It was a truly extraordinary gathering.
All my love,
Winnie