Nancy and I share many “favorite” foods.
Anchovies.
Popcorn.
Strawberry preserves on “normal” PB+J’s.
Peas?
Peas never ever grace my plate. Just give me a PB+J any time—even with grape jelly. But Nancy has strange cravings while her new immunity is “setting up shop.” She is slowly eating more things, and more of the things that she does eat. Nearly every day, she eats one full meal, along with strange snacks for which she has a craving. She has returned to her pre-illness weight, which is a good thing.
“Peas?”
I look to the back of a bottom kitchen shelf where a Green Giant smiles back at me and obediently respond, “Let me see what I can do.”
My schedule is varied, so weekends often find me at the office. But during this particular spring and summer, with Jayna living in Salt Lake City where she is finishing her last semester of college, Saturdays and Sundays usually mean a visit from our daughter. Consequently, for the first time in recent memory, weekends are distinct from other days of the week.
We try to have at least one complete meal at the dining room table.
We always watch a rented movie in our new home theater.
We even enjoy a cocktail or glass of wine if Nancy’s ever-changing taste buds are willing.
“To you, Mom. I love you,” Jayna toasts on this summer Saturday in July.
“Why always to me, Jayna? Is it just because I’m still standing?”
Laughter emanates from all four corners of our table—even Jaret laughs while sipping sparkling cider.
“Yes, Mom. You’ve been through so much this year.”
“You know, I’ve been thinking. It really wasn’t that bad. And there are days now that I feel healthy—almost normal.”
Both Jayna and I simply roll our eyes and shake our heads.
Summary: We really appreciate your many thoughts and prayers. Though you don’t (and won’t) hear from me as often now, unlike Nancy, I do remember—the frightening times, the bad times, and how your support helped each member of our family. What a long, long way we’ve come.
Sincerely,
Winnie
A Great Day for a Haircut
October 27, 4:44 p.m.
Dear Friends and Family,
The light streaming through the window is a little less intense in our corner of the world now; our lawn is hiding beneath a shallow blanket of brilliant gold aspen leaves sprinkled with an early season snowfall.
I realize that it’s been several months since my last update, but life has been terrifically unexciting. Summer and fall have been filled with bright sunshine, both inside and outside our Woodland retreat. Nancy continues to slowly recuperate, experiencing more good days than bad. In general, our family, and Nancy in particular, has savored each and every day without hospital food.
So why write now?
Today is October 27.
On our family’s revised post-illness calendar, October 27 is our biggest holiday. On this day last year, Nancy received her gift—the transplant.
Today is our day to reflect and be grateful. It is the day we are finally allowed by the National Marrow Donor Program to initiate the process that may lead to our finding out the identity of Nancy’s donor. Each member of the Winn family would like the opportunity to personally thank Nancy’s donor.
While Nancy went to Park City to obtain the ingredients for our celebratory dinner, I filled out the proper transplant registry paperwork and posted it in our mailbox with great satisfaction. I can think of nothing more gratifying than to shake our donor’s hand and have him meet Nancy’s many friends and supporters. If we are able to contact him and he consents, we plan to fly him to Park City for a big party in his honor. We’d like him to meet as many of you as possible.
When Nancy returned home in the early afternoon, I inquired, “Hi, Nancy. How was Park City?” My bride gave me a look we exchange frequently. “What do you think?” dangled from the corners of her lips. She won’t ask. It’s part of a game we both enjoy—which of us will break first?
“It was fun, Winnie. I ran into Jane at the Albertson’s and Susan at Linens N Things. Both asked about you. And I found a razor for Jaret.”
(Nancy finally has enough strength to make local shopping trips, and her taste buds have finally recovered. Much to my delight, she is also cooking again.)
“Can I have a sip, Nancy? I’m dying of thirst.”
Nancy picks up the sixteen-ounce Coke cup sitting between the driver and passenger seats. “Sure, Winnie,” she said as she handed me the half-empty drink. After taking a big gulp, I spit the contents almost across the driveway. “What is that?”
Between fits of laughter, Nancy replies, “Just one of my ‘combos’—I start with Mountain Dew, combine it with lemonade, and then add vanilla Coke. Oh, and raspberry tea at the very end. I forgot—you don’t like tea.”
I surrounded her with my arms. “You really got me. You haven’t made one of your ‘combinations’ in a very long time. It must be a special day.” Then, softly rubbing her head with the back of one hand, I could no longer ignore Nancy’s now beautiful hair. “I like your hair. Do you?”
Nancy shook her head from side to side, pleased with her pyric victory. I had commented first. “Yep, I do. I wondered if you’d notice or at least would say something.”
I twisted her new curls between my thumb and index finger. Over just an hour or so ago, those curls hung two or three inches longer. It was her first haircut in seventeen months. Bald, long, or (now) short, she always looks great.
Nancy was diagnosed with AML on May 29. After achieving the first remission, we were told she had, at best, a 5%–10% chance of survival. With the transplant, her chance of survival increased to 50%. And by a hundred days post-transplant, we heard incredibly good news from her doctor: “Nancy, you made it through an extremely rough procedure. By making it this far, you have an 80% chance of a cure.”
On this day last year, less than two ounces of bone marrow stem cells flowed into Nancy’s vein. And the news from Nancy’s doctor today when he called with results was the most wonderful news that a person can receive.
“Nancy’s one year (post-transplant) bone marrow shows no sign of leukemia. The donor stem cells are healthy. A recurrence of leukemia will get more and more unlikely as the months pass. By two years, Nancy’s risk will be less than 5%.”
Our next challenge?
We will need to get Nancy off the remaining bone marrow–suppressing medicines so she can be around larger groups and travel again. Right now, heading into the winter flu season, she still is at greater risk (than you or I) for normal and unusual infections. Since her new immune system is literally in its infancy, Nancy has to redo her “baby” shots such as polio and tetanus in the next six months once she tapers the medicine that has been suppressing it.
And after that, the next big milestone according to Dr. Pulsipher?
“Once Nancy is off her immune-suppressing medicines and makes it another three months, have a big party. At that point, it’ll be highly unlikely her graft will attack her organs. And she will be able to resume a more normal life without much worry about germs.”
You may not hear from me until close to the three month’s post-medicine day, but I can promise each of you that you will be invited to the big party.
Summary: On her “new” birthday, Nancy had her first haircut in almost a year and a half. We also heard the sweetest of results from her recent testing. There is no leukemia in Nancy’s body. Simply put, her doctors couldn’t have been more pleased with her progress. Nor could we.
My very best,
Winnie
Growing Up Is Hard
October 31, 10:35 p.m.
Dear Friends and Family,
When in rapid succession this morning Nancy answered the phone with the smile reserved for first Jayna and then Jaret, I decided it might be a good time to update you on the kids—especially since she relat
ed to me everything she heard on the other end.
“Hi, Mom. Guess what? I just gave blood.”
“That’s wonderful, Jaret. You might help save a life.”
“That’s what I’m hoping for.”
I know I mentioned in one of my very early letters that when Jaret was in kindergarten, he disliked everything about Halloween. “I don’t want a costume,” he’d protest on the day most kids couldn’t wait for school to show off their newest outfit. Not only did he hate costumes, he was afraid of masks, and Jaret even despised carved pumpkins. As he grew up, so did his “blacklist.” It expanded to all things medical. He would hide when we passed graveyards. He had an aversion to bones and blood, until his mother got sick.
Jaret stepped up big time when his mom became ill. He spent more time in the hospital last year than most kids do in their entire lives. He even relieved Jayna for a few of the all-night shifts with Nancy. And I can’t forget his efforts to clean up the bloody mess when Nancy inadvertently pulled her central IV line out in the Salt Lake City apartment kitchen. So it is only fitting that Jaret has matured enough to donate blood as he finishes his last semester of college—voluntarily.
As far as Jayna’s status, yesterday, I received a call at 7:45 a.m.
“Hi Daddy, did I wake you?”
“No, Jayna, I’m the first shift today. I’m on my way to work.”
“I am, too. This is hard, Dadder. It’s so early. I’m used to getting ten hours of sleep a night. Today that would have meant getting up around twelve. I guess I’ll have to call it a night a bit earlier than two in the morning. We went dancing last night.”
“I have a better idea, Jayna. Why don’t you just tell everyone that you speak Spanish and need a midday siesta? We really don’t want work interfering with your dancing.”
“You’re absolutely no help, Dadder. Well, I’m here. So have a great day. I love you.”
Jayna graduated college this summer and began her first job while she (like many of her peers) is figuring out what to do next. Five days each week, she sits at a desk working as an online travel agent for Overstock.com in Salt Lake City. It’s great having her nearby Nancy and me. And on some mornings, it’s worth a few good laughs as she adjusts to the “working” world that the rest of us live in every day.
Summary: The fog of the past year is slowly lifting for our children. It is so wonderful to see them returning to ordinary lives. Nancy and I feel the same way.
With much love,
Winnie
Christmas in April
April 4, 2:13 a.m.
Dear Friends and Family,
April in the mountains heralds the final gasp of winter. The ski resorts close. The once dominant all-white covering fades from the landscape. By the time errant snow patches hide only under trees or on tops of faraway peaks, I pretend the holidays aren’t that long ago. I remove the Christmas cards I received in December from a special drawer in my desk. Most years, the mountains are completely green by the time I start my yearly epistle. So by my timeline, the fact that you are receiving my “Holiday Greetings” in April is really early this year.
Why?
Milestones.
In my lifetime, I can’t remember another year when our family celebrated more momentous events. And none was bigger than this past week on April 2. Two days ago, Nancy swallowed her final Cyclosporine tablet. (Cyclosporine is the medicine designed to hold her donor graft immunity in check. It is the medicine that has kept her away from crowds and out of airplanes.)
As Nancy swallowed that last pill, I reminded her, “Three months from now, we can travel anywhere our hearts desire. Where do you want to go first?”
Barring any setbacks, Nancy will have no restrictions. By then, the twenty other pills per day should be down to just vitamins and a few medicines unrelated to leukemia. She should also be well on her way to redoing her “baby” immunizations.
What am I trying to convey?
On Christmas Day three and a half months ago, Nancy resided in the hospital. She was beautifully bald and in the middle of her treatment. She had been in and out of the hospital multiple times, both for treatments and for complications from those treatments. Many days I worried about what came next. On other days, Nancy was so sick I wondered if she would make it to the following day. Good times were measured in minutes and hours, and, on rare occasions, full days.
Now Nancy is home in her own bed. She has a full head of hair that even requires haircuts. Good times are now measured in weeks and, soon, months. Consequently, for our family this year, I’ve declared April 2 as Christmas Day. I am sending our “Holiday Greetings” out today not only to those on my update list but also to those on my Christmas list.
With Nancy taking the last pill (Cyclosporine) that has been holding her immune system in check, her transplant will gain full strength sometime during the next ninety days. She will finally obtain the “protection” she needs against germs that will allow her to return to a completely normal life. We have been excitedly waiting for this day. It is a great and wonderful reason to celebrate Christmas.
Though Nancy’s milestone obviously surpasses everything else, a few other high points are worth mentioning in the same way I have traditionally undertaken my annual review for the last twenty or so years.
All right, I’ll get mine over with first.
Every year, our partnership has donated a scholarship to a graduating senior of the Park City High School interested in a medical field. In 1990, the recipient was Charlie Morrison. He excelled in college and went on to medical school—which made it especially gratifying when he joined our partnership in 2004. Not only is Charlie a gifted and caring physician, he is an easily loved human bursting with a good sense of humor. We’ve become fast friends.
Last fall Charlie and I were talking about medicine, mountain biking, and family when he told me his father was about to retire. “How old is your dad?” I inquired. “Almost sixty,” he replied in a tone that made sixty sound like it was just short of the century mark. When I related my conversation later that night to Nancy, she hooted as loudly as me. She recognized the irony—I am due to turn the big “6-0” in February, just like his father.
The day after our conversation, Charlie and I climbed for more than an hour to reach the top of a lengthy and sometimes steep mountain trail. I reached the summit long before Charlie. I didn’t tell him I was a few days older than his dad. The mountain bike ride was a personal milestone, if not outright challenge, given Charlie’s words about age.
The kids’ landmarks easily dwarf mine.
“Hi, Jayna. Guess what came in the mail today? Are you even a little excited?”
“Oh, well. I guess a tiny bit. Is it pretty, Dadder?”
When Jayna rushed home after her junior year abroad in Peru to be with (and help) her mother, she transferred from Vassar College to the University of Utah. Nancy and I were heartsick that she would not spend her senior year with her friends and classmates, taking the best upper-level courses while participating in the many traditional things seniors do at a small college. But Jayna was adamant. “I want to be here with you, Mommy. I want to help you fight your battle along with Dad.”
Jayna’s final year was different from her other college senior friends. She took basic courses in international studies because Utah didn’t have the same upper-level courses available at Vassar in her Latin American Studies major. Nights were spent in the hospital alternating sleepovers with me, not in the dorms or clubs being young and carefree with friends. Her thoughts were dominated by her mother’s lab values and medicines rather than daydreams about dates or planning for graduate school. At year’s end, she chose not to “walk” for graduation, opting instead to wait for her diploma to come in the mail.
Still, as I pulled Jayna’s diploma from the University of Utah envelope that had just been delivered to our mailbox, I was nearly overcome with emotion. “It’s not pretty, Jayna. It’s beautiful—just like you.”
; “Oh, Dadder. You’re such a soft touch.” Even over the phone, Jayna could see my face from hearing my voice.
“But, Dadder. For the last time—I have no regrets. It was worth it.”
Jayna is now a college graduate. Despite having a GPA that would allow her to do pretty much anything (4.0 at the University of Utah and 3.9 at Vassar), her next step will be having fun after a difficult twenty-two months. She has decided to remain nearby for at least another year, so she has found a job in Salt Lake City and, for the very first time, her very own apartment. We see her often, and she continues to be exceptionally close with her mother.
And Jaret?
When Nancy came home from the hospital at the end of last March, she was light years better than the many months when she would fall asleep in the middle of a meal. Still it was not uncommon for her to have far fewer waking hours than those spent sleeping and napping. But her decreased strength could not dampen her singular purpose—to help Jaret through his final days of college. By his last semester, the task seemed formidable even to Nancy. His ending class was titled “Research Methods.” And what did that entail? Numerous presentations, a twenty-page paper, and the design of a project.
Many nights, Nancy would confide, “C minus is all he needs, Winnie. But I don’t know if it’s possible.” Speaking in front of groups and writing long papers are nearly impossible tasks for someone with autism, like Jaret. But he had made it almost to the end and even had a 3.4 GPA. So with Nancy’s usual unwavering support and constant help, Jaret made an A minus. He will receive his diploma in June. Quite honestly, we never would have predicted such an accomplishment. There are now two new college graduates in our family.
A final story about Nancy’s journey and how far we’ve come.
I am the luckiest guy in the world. The other day, I had two dates to the afternoon matinee, the kind of movie Nancy is allowed to attend since there are few other people in the audience. In fact, the three of us were the only ones in the entire old-fashioned movie house in the nearby hamlet of Kamas. We could talk normally, laugh as loud as we wanted, and throw popcorn (not that we did) with impunity. On the way home, I was designated chauffeur, since Nancy and our good friend Joan decided to sit in the back seat. It was totally appropriate, since they ignored me and did all the chatting, like two schoolgirls at a sleepover. Nancy was her old self. I heard frequent giggles in the midst of conversations ranging from haircuts to world politics.
Night Reflections Page 31