Undeterred, I didn’t change our “moving-in” routine. I spent a full forty-five minutes decorating our room. I placed our plastic flowers in all the unusual corners and shelves, hung the hand-carved birds that my partner Bob Evers created from exotic woods, and found a special place for each of Nancy’s handpicked pictures.
As a result, the “white sterile box” was transformed into Nancy’s personal hideaway. However, just as I received Nancy’s final approval of my decorating efforts, our nurse, Gwen, entered the room and raised her eyebrows somewhat in shock: “Wow, you certainly didn’t waste any time in making this room homey. But I was just told that Room 507 is available. It’s directly across from the Bone Marrow Unit nursing station. It’s opened up and we need to move you. I’m sorry you went to all this trouble, but 507 is a really nice room. It’s one of my favorites.”
“Don’t be frightened, Nancy. I know this is a lucky room.”
How could my numbers game have gone so wrong?
“Honey, I’ll be right back. I need to make a bathroom run.”
I have never lied to Nancy before, and I considered this only a slight “fib.” I simply didn’t want her to see my disappointment. But I must admit, I couldn’t help but wonder if Room 507 might be bad luck?
I did make the trek to the bathroom, but my real purpose had nothing to do with my bladder. I actually needed to corner our nurse for this shift, Connie. Her last words when I met her were, “Please feel free to ask me any question.”
“Connie, you may not be able to answer my question, but did the patient who was in our room before Nancy die?”
My question wasn’t totally off the wall. Nancy had been quoted a 20–30% chance of not walking out of “that” room, and I simply needed to know the answer—for me and for Nancy. Before I could completely finish my question, though, Connie responded, “Heavens no. The previous patient went home earlier than we expected. The doctors sometimes fool us that way.” Connie touched my shoulder as she handed me a Kleenex, “Don’t worry, Winnie. You’re in a good room. I know it. Nancy is doing great.”
Events are already starting to blur for us—after only two days. We constantly watch staff scurry in and out through our always-closed door. They administer an endless supply of medicines, fluids, and treatments. Most of the time, Nancy’s eyelids appear heavily weighed. She does her best to swish and spit four times a day to keep her mouth healthy. She blows into a bottle to help keep her lungs expanded.
I have always been good at remembering names, but I am beginning to wonder with each passing day.
Is our recreational therapist named Joanne?
Or is Joanne the nutritionist?
Maybe Joanne is the social worker?
How about the physical therapist?
Is Joanne the cute environmental health worker? (No, I actually do recall that her name is Juana. She is from Peru. The other day she and Jayna spoke Spanish for twenty minutes and formed an instant bond. Our room stays really clean.)
“Guess what, Nancy? I just spoke with Connie. She had very good news. The last patient in this room . . .”
Summary: Our new room is “The Lucky Room,” FIVE-ZERO-SEVEN, University of Utah Hospital, 50 North Medical Drive, Salt Lake City, Utah 84132.
With luck,
Winnie
Pleasant Dreams, Sweetheart
October 24, 6:45 p.m.
Dear Friends and Family,
With only two more days left in her multiple drug pre-transplant chemotherapy regimen, Nancy is poised to begin a new drug, Cytoxan. Our nurse, Erlene, described Nancy’s final “poison” as she hung the bag. As I listened, I couldn’t help but wonder, “Why would a drug company include ‘toxin’ in a drug’s name even though it ended with an ‘a’ not an ‘i’?”
“Nancy, this medicine will make you pretty nauseated. It’s noxious to the bladder, so we’ll give you lots of fluid to minimize its effects. You will need to get up and go to the bathroom at least every hour. And Cytoxan sometimes burns on its way into your vein. Don’t be afraid to ask for your pain meds. It’s also not uncommon to have jaw pain and flushing and other side effects.”
Nancy’s expression to this warning was stoic and full of resolve. So when Jayna arrived to cover my absence, I left for work at the clinic with somewhat guarded confidence. Unfortunately, I found a much different Nancy when I returned to the hospital in the early evening. She was no longer the sleepy, mildly uncomfortable, slightly nauseated patient I left earlier. Instead, Nancy was tossing and turning in her bed. She struggled to say hello when she finally noticed me. As I looked at her face, I saw dry and peeling lips. Tense muscles furrowed her brow. After the hello and a noble attempt to smile, Nancy vomited.
Cytoxan.
Two doses.
One today, almost finished.
One tomorrow.
I cleaned up the floor next to Nancy’s bed and went to the ice machine in the hall in anticipation of Nancy needing cold fluid. When I returned, I stroked her forehead and massaged her feet. Erlene brought Nancy a parade of drugs for nausea and pain. “Would you like a movie as a distraction?” I asked. Nancy didn’t have the strength to speak, and I could sense that every bone in her body was aching, but she did nod her head. She even attempted to grin as she tried to make me feel better.
Upon finishing Nancy’s foot massage, I heard the repetitive sound of restful breathing. It was followed by what has become one of my favorite sounds, Nancy’s telltale snort. Finally, she was asleep. Dances with Wolves stayed in its package. There would not be any dancing for Nancy on this particular night.
Jayna, who left when I arrived, returned three hours later. She brought hugs, kisses, and her upbeat presence. Erlene came and removed the empty Cytoxan bag. Round one was in the history books.
Jayna’s kiss, placed gently on her mom’s fuzzy head, triggered open eyes, both wide and bright. “I’m cold,” she said, after grabbing Jayna’s hand.
I jumped immediately from my chair, a soft hospital blanket in hand.
“What will I ever do at home?”
“What’s going to happen when I mention something and nobody responds?”
“Do you think I’m spoiled?”
Nancy giggled softly at her discomfort and went on to say, “The hospital stuff isn’t so bad, Jayna.”
“I sleep all day.”
“I wake up and get nausea pills.”
“I eat.”
“I go back to sleep.”
“I even had a funny dream while receiving this latest medicine.”
“What’s its name?”
“Oh, it doesn’t matter . . .”
“What happened in the dream, Mommer?”
“Do you see that giant IV bag?”
“Which one, Mommer?”
“The one that looks like a cow’s udder filled with milk?”
Since Nancy now battles constant nausea and her gastrointestinal lining is irritated as a result of her medicines, her oral intake has dropped to near zero. The “milk” bag she pointed to was actually filled with TPN, an abbreviation for total parenteral nutrition. We have been told Nancy won’t be eating much the next couple weeks, so this liquid food will run day and night. Each bag of TPN was at least five times as big as the four others hanging from Nancy’s IV pole. (Quite comically, it looks like milk going directly into Nancy’s vein instead of being clear like water as in the other IVs.)
“I dreamed I was lying right here in bed, looking up at that ridiculous IV pole. I tried to read the names of the medicines on each of the three IV bags and the two IV bottles hanging from the pole. I asked the male nurse, who looked like Seth Meyers, ‘Why are you giving me milk from a bag that is so much larger than the others?’ But guess what? The reason the nurse looked like Seth Meyers is that I was actually part of a skit for Saturday Night Live. So the Seth Meyer look-alike flipped a switch on the IV pole and the bags and bottles begin to spin like a teacup ride at the circus and then smash, that big one with the white liquid food
fell onto my face and smothered me.”
“Pleasant dream, Mom. I like the South Sea Island one better.”
“But Jayna, don’t you realize the dream was good news? It meant I don’t have to receive tomorrow’s dose of that medicine. I remember its name now, too. Cytoxan.”
In actuality, none of the six different IVs hanging from Nancy’s pole fell onto her that night. She endured her last Cytoxan dose, still more than a bit stoic and resolved. She ached and she vomited and she made her hourly trips to the bathroom. And when the drugs were all finished—she went from feeling horrible to “not so bad.” As she began to feel better, her first thought was “Where is the remote for the blinds? I bet it will be a pretty sunset tonight.”
The sunset was certainly beautiful. As the Oquirrh Mountains on the horizon swallowed the bright-yellow orb, we watched red-and-orange cloud wisps fade slowly into gray as the darkness turned the city’s buildings into dark shadows only visible due to the lights in the streets and in the windows of homes far below us.
“Another day comes to an end,” I whispered to Jayna. With Nancy deciding to look outside for the first time of this hospitalization, the day held additional significance.
Nancy startled me when she raised her thumb to the air:
“And another treatment comes to an end.”
“I am done.”
“No more chemotherapy.”
“I get to rest tomorrow.”
“Then my transplant.”
“Come give me a hug.”
“Both of you.”
Summary: A momentous day. Nancy finished her last “poison” medicine today. Chemotherapy will soon be an unpleasant, distant memory. She didn’t experience any horrible, life-threatening side effects, though she did feel terribly sick with nausea and vomiting. After another day’s rest, she will receive her transplant. Finally.
So much love,
Winnie
From This Day Forward
October 27, 5:32 a.m.
Dear Friends and Family,
“What’s a bone marrow transplant procedure like?”
It’s a frequent question.
So here’s my attempt to describe it to you.
The two lab technicians were all grins when they knocked on our door and entered Nancy’s hospital room. Cedric and Erin introduced themselves. They were from the hematology lab, the one that handles bone marrow transplants. Cedric was carefully carrying a small IV bag in his arms like it was a newborn baby. Erin had a black, large briefcase-sized shoulder bag containing equipment. Cedric immediately stepped up to Nancy’s bedside so that she could see what he was cradling with his left hand while protecting it with his right arm.
The contents of the bag were bright, glow-in-the-dark red, like the AraC chemotherapy medicine. Since Cedric was holding the bag close to his body, its intense scarlet brilliance made quite a contrast with the long, white lab coat he was wearing. Jayna, Nancy’s sister, Linda, and I had anxiously been waiting since early in the day. Erin quickly read the inquisitive look on our faces and explained, “We didn’t receive the donor specimen until 6:30 p.m. tonight. I’m sorry it took us so long to get here.”
I looked at the clock. It was well past midnight. Jaret was already back in his dorm asleep because he had two classes in the morning. October 27, rather than the originally expected October 26, would now be the “date of record” for Nancy’s new beginning because of the lateness of the hour.
“Is that all I get?” Nancy inquired, sitting forward in her bed and leaning to her left for a closer look at the small bag in Cedric’s comforting embrace.
“Yep,” Cedric replied, shuffling his feet. “But let me explain what’s happened so far. When the specimen reached us, there was over a liter and a half of fresh bone marrow material. It was collected early this morning and flown here from somewhere in the United States, probably back east, but we’re not sure. We’ve been processing the bone marrow ever since it arrived at the lab. First, we drained off the fat and bone products. Then we put it in our spinner. Next, we siphoned off the stem cells that form at the top and ran tests for infections like hepatitis. Finally, we separated as many red blood cells from the stem cells as possible. We are left with mostly the stem cells that are right here.”
Cedric’s face beamed as he looked proudly at the bag he held close to his chest. He rubbed it gently, as if it was a baby’s head.
“Well, just how much is in that little bag? It’s pretty tiny compared to any of the IVs I’ve been given the last nine days.”
Before Cedric could answer, Erin chimed in, “Almost two ounces. Fifty-three ccs to be exact.”
Less than two ounces?
In my hand was a standard Pepsi can, twelve ounces. That’s six times more fluid than the IV bag that was in Cedric’s hands. I couldn’t help but think how could such a tiny amount of fluid be worth the ordeal of the last five months?
“Are there enough stem cells to help Nancy?” I blurted without thinking.
“Absolutely,” Erin announced, highlighting each syllable loudly. “Each cc in this bag contains about 340 million stem cells. Nancy will get more than enough to give her a fresh start.”
When Erin paused, Cedric added, “Approximately 8 cc of the 53 cc are red cells we weren’t able to separate away without damaging the stem cells. They cause the very bright-red color. And those red cells will probably cause a minor reaction because Nancy’s red blood cell type is different from the donor’s. But 8 cc is an acceptable amount, so Nancy’s discomfort shouldn’t be too great. All she should feel are a few aches and chills.”
Erin finished her paperwork and double-checked the numbers on Nancy’s ID bracelet. She handed the transplant bag to our nurse, Chris, using both hands so there was no chance the bag could be dropped inadvertently. Chris willingly accepted the offering with two hands, added the IV tubing she had prefilled with normal saline solution, and hooked the tubing into Nancy’s central line, the special IV that enters her right upper chest and drains directly into a large vein below her clavicle.
“Well, Nancy, are you ready?” Chris asked as she looked at the wall clock (now almost four hours ago) and recorded the time, 12:37 a.m., on the form that had been placed on Nancy’s night table. Chris had a smile from ear to ear—just like Cedric and Erin.
A bone marrow transplant, while not a major surgical operation like a kidney or heart transplant, is still dramatic. The science behind this potentially life-altering moment spans literally decades. And the logistics in our case of finding an unmatched donor and getting the “little red bag” to Room 507 at the University of Utah Hospital in Salt Lake City had been formidable.
Everyone in the room heard Nancy’s audible gulp.
What could she be thinking? I thought silently. I squeezed her slightly sweaty hand between both of mine. Her resolute blue eyes looked squarely into my eyes. She didn’t even have to ask.
Yes, I was ready even though my hands were now moist like Nancy’s. My mind raced almost out of control and I silently thought to myself:
What if our donor had been hit by a truck on the way to the hospital?
What if the plane carrying his sample had crashed unexpectedly?
What if, of all days, an earthquake struck the Wasatch Fault today?
A multitude of unpleasant and usually catastrophic possibilities dominated every moment I wasn’t engaged in direct conversation with Nancy or the others in the room. Each thought gave me pause. And through them all, I attempted to appear normal.
Once again, I thought silently—Is this what schizophrenic voices were like?
Erin finally broke the silence, “Did you know that to get your one and a half liters of bone marrow, your donor endured more than 150 sticks?” She pointed to her left hip. “Right here.”
Despite all my research, I hadn’t uncovered that particular detail. I would have been even more frantic had I known what the donor endured for my Nancy. Such worries, though, were now officially over. The red mirac
le fluid was being hung on its own IV pole as Erin spoke. The tiny life-giving cells were alive in our plastic bag. A crash to the floor couldn’t jeopardize Nancy’s chance for a cure.
Chris turned the dial to begin the flow of bone marrow after handing the tubing to Linda, Jayna, and me so it would pass through each of our hands before going into Nancy’s chest. The 53 cc of mostly stem cells slowly dripped from the IV bag. The red stem cell fluid mixed with the clear liquid in the tubing and trickled down toward Nancy, lying in bed with her head elevated on three comfortable down pillows. I said a silent thank you to our “angel” donor as I watched the stem cells pass through first Jayna’s, then Linda’s, and finally my hands. In seconds, the leading red edge of the fluid entered Nancy’s body. The entire tubing was now red, stem cells marching dutifully through her central line.
“Please find a suitable home,” I prayed silently.
“Do you feel anything, Mom?” Jayna asked softly.
Nancy looked at Erin and Cedric and then each of us. “Relief,” she answered, imparting the cheerfulness we all needed.
Jayna and Linda had moist eyes. Though my contacts did their job, Nancy wasn’t wearing her lens. A tear ran down her left cheek.
“Mommer, don’t cry. You’re getting a brand new immune system. I know you’ll make it.”
“What makes you think that?” Nancy inquired, getting her own tissue. None of the rest of us dared remove our hands from the tubing.
“Because you’re so strong. Look how you’ve made it through chemotherapy.” Linda definitely agreed. Her shoulders appeared ten pounds lighter.
“And so nice,” our nurse Chris added. “I’ve never had a patient thank me when I give her a shot.”
Nancy frowned slightly so that her eyebrows pointed downward and her forehead wrinkled: “But I’m soooo old. Even though today is my new birthday.” We all laughed. (According to bone marrow tradition, from this day forward, Nancy will consider today her “other” birthday, the day her new bone marrow was born.) No longer frowning, her face was glowing and without tears.
Night Reflections Page 20