Dear Friends and Family,
I’ve been working my daytime job during the hours that I’m not at the hospital these last few days, leaving me drained by the time Nancy’s eyes close for an extended stretch, which in her world is two to three hours. I’ve been too exhausted to write.
Sorry.
Today, however, starts four much anticipated days off from the clinic.
In reality, there is a second reason I’ve waited to correspond.
Nancy’s test results.
Yesterday, Nancy endured a procedure called a bone marrow biopsy. A large bore needle was inserted into the back of her pelvis to extract bone marrow tissue containing the parent cells that produce the various components of blood. Even though Dr. Morton used a local anesthetic, the technique is far from painless. The grinding sound of bone being crushed could be heard across the room. I cringed, even though I’ve done the procedure myself a few times during my medical training.
But you know my Nancy. Not a single sound or word was uttered when Dr. Morton thrust the needle deep into her bone. A barely felt squeeze of my hand and the slightest tensing of her eyebrows divulged that she was experiencing discomfort. In contrast, by the time I was wheeling her back to our room, I was drenched with sweat.
Once “home,” Nancy immediately fell into a deep sleep; I presumed she was exhausted. Again, in comparison, I was wide-awake and fidgety. I walked the halls, pondering the coming hours. I faced a worry-filled, sleepless night. After all, the teaspoon of tissue-filled fluid Dr. Morton extracted from Nancy’s back would soon tell us if the bone marrow killing medicine was doing its job. By tomorrow morning, Nancy’s test results would be complete. We will know if Nancy has any prayer of beating her disease.
My bad night was nothing compared to Nancy’s. Before the procedure, Nancy had taken several laps around the eighth-floor hallways, a proud smile hidden beneath her mask. She had laughed at my dumb jokes, eaten cookies topped with strawberry ice cream, and taken a long, hot shower. We enjoy simple things these days, and Nancy’s shower culminated nearly forty-eight hours of her feeling pretty decent.
The good times ended for us three hours after the procedure; Nancy awoke from her slumber and sat straight up in her bed. Her face was flushed and she said her temples pounded and the ulcers in her mouth tingled. She struggled to find a less uncomfortable position. As I rang for the nurse, I put the back of my hand to Nancy’s forehead. Our nurse confirmed my fear with her thermometer. Nancy was burning up with fever.
Nancy has had mild congestion since admission but is not allowed to blow her nose for fear of bleeding. As the night progressed, her congestion worsened, making breathing a chore. Between audible breaths, she pleaded, “Winnie, I ache.” Inquiring where, she answered, “From the top of my head to the bottom of my feet.” Nancy was miserable. Not only did my heart wrench with her pain, I was frantic.
Is this a bad omen for the test results?
I covered Nancy with blankets fresh from the warmer that sits at the end of our hallway. When the covers made her too hot, I took them off. I placed an ice bag on her neck and a second on her forehead. I wrapped her wrists in cold, wet washcloths and did the same to her elegant ankles. I rubbed her back softly, so as not to bruise. Nancy’s oxygen level dropped below the safety zone and supplemental oxygen was restarted. I longed to see Nancy asleep, dreaming of better times. At least there was little time to fret over the bone marrow results.
This is the roller coaster of chemotherapy, and we have tried to relish the peaks. We know her condition can change quickly. And just like last time, it did.
By sunrise, the headache was gone, Nancy was weaned off of oxygen and back to room air, and her temperature was no more elevated than mine. By the time Dr. Russ Morton, our hematologist/oncologist, entered the room for his morning rounds, Nancy was sitting up in bed without squirming in pain.
Ready.
My heart rate increased as I noted the serious look on Russ’s face and the way he wrinkled his brow. I took a very deep breath as he began to speak: “Nancy’s bone marrow test revealed an empty marrow. This means we no longer see any cancer cells. The chemotherapy is working. It’s as good as we could have hoped.”
I silently cheered as his words penetrated my being. The “bad guy” cells had been wiped out by the “assassin” medicine. I nearly stood up and raised my fist like an Olympic athlete about to receive a gold medal. But Dr. Morton paused as he looked back at Nancy, and then me.
Why does he still look so serious?
Shouldn’t we be planning a party?
Dr. Morton cleared his throat and continued: “However, we also received results from the tests we ran when Nancy was first admitted. The ones we ran to confirm our initial working diagnosis—the M3 type of leukemia. Unfortunately, they all came up the same. Nancy does not have the M3 type.”
I sunk into my chair, wanting to vanish from the room. My head was spinning and my palms were so moist I had to rub them on my pants. I had been studying about leukemia during my sleepless nights. I knew what his next words would be before he spoke out loud.
“What this means is that Nancy’s prognosis is not quite as good. We now think her classification is M5, but the exact type isn’t important. We lump all non-M3 leukemias together. If you can achieve an initial remission like Nancy has, they have a cure rate between 30 to 40%.”
His words felt like a kick to my groin. I wanted to throw up. Instead, I grabbed one of Nancy’s elegant ankles and gently rubbed it. Nancy seemed to be handling it much better than me. Her facial expression hadn’t changed. She was attentive and seemed to understand. She would later tell Jayna and me, “Don’t worry, you two, everything will be all right. We’ll adjust.”
My expression did change; Dr. Morton had no trouble reading my feelings.
“I know this is disappointing, Winnie. And for good reason. This is a curve ball. A very tough curve ball. But despite this news . . . believe me . . . the sky is not falling.”
Then why did it feel that way?
Dr. Morton went on to describe our next steps as I fought back my tears by biting my lip: Wait for Nancy’s immunity to recover. About four more weeks, he thought. Then home for a two-week vacation. Then back in the hospital for another round of chemotherapy. Repeat the cycle several times. Each chemotherapy course would have the side effects we’ve come to expect: fevers, anemia, bruises, ulcers in the mouth, nausea, diarrhea, and generally feeling awful.
Each cycle would have a big risk—infection. Any bacteria, fungus, or virus smart enough to take advantage of her compromised state could mean game over.
Throughout, Nancy’s face remained serene and beautiful. Flashing her amazingly warm smile, she thanked Dr. Morton as he departed through the door. She motioned me over for a kiss and followed it by stroking my hair.
How could she be comforting me?
I forced myself to rally and gave Nancy a long kiss too, not on her cheek as has become our recent habit, but on the lips.
Yes, our lives have once again been flipped upside down and sideways—but we are still spending the most intimate times a couple can spend together.
My new mantra will have to be “a 30–40% chance is better than 0%.”
Isn’t it?
Summary:
1. Nancy has achieved remission. For now, science can detect no trace of Nancy’s AML. This is incredibly exciting, as good as we could have hoped. Your thoughts and prayers are working.
2. Nancy’s road to a cure will be considerably longer and far tougher than we originally expected. Her diagnosis has changed from the more easily treated M3 subtype of AML to a non-M3 subtype of AML that often recurs with dire consequences. Still her current remission was achieved using only one induction (assassin) drug. Normally, two drugs are used in the beginning for a non-M3 AML. Though the change in diagnosis is truly depressing, we could have learned that besides not having the M3 subtype, Nancy also was not in remission. No remission would have meant disaster. Instead, she is in remission and will have multiple rounds of chemotherapy in an attempt to kill the leukemia cells that remain hidden and undetectable by current testing methods.
My very best,
Winnie