After the very high dose of chemotherapy (Melphalan) on Valentine’s Day and the Stem Cell Transplant on Day 0 (the birth of Munira, Version 2.0), the rest of the time in the hospital has been waiting for the stem cells to engraft, and for me to manage the devastating effects of the chemo.
And what a process it’s been! Day +1 through Day +4 were relatively easy. I entertained visitors in the beautiful Rebecca’s Hope Lounge on the 14th floor, ate Indian snacks (thank you, Shamim!) and hot dogs, danced the hokey pokey, read a couple of books, and took the time to rest. During this time, as my hemoglobin and platelet levels dived, I repeatedly needed blood and platelet transfusions. But I was doing okay.
And then from Day +4 to Day +9, I felt like I was hit by a truck – literally. I was so sick that I just wanted to curl up and die. All the effects of the chemo from the week before hit me with full force. And even though Dr. Franke had prepared me for it, I could not imagine how sick I would get. Lifting my head from the pillow was a big deal. Taking a shower exhausted me for the rest of the day. Thinking about getting out of bed to take a walk was unfathomable to me. I could watch TV for a few minutes before my eyes would close. My meals trays went untouched — I couldn’t eat anything. I survived on Gatorade, Ginger Ale and Ensure. The reason for all this is that all my white blood cell counts were at zero from the chemo (as expected). During this time, the stem cells were seeding and multiplying. This is a process that takes time and not something you can rush. I needed to have several more blood and platelet transfusions, and neupogen injections to bring the counts up. Every day I wondered if I could do this.
On the night of the Oscars, I had a nose bleed — because of low platelets, and the nose bleed would not stop. It was impressive to watch Nagib and Shayne take turns applying pressure, hands bloodied, blood on the bed, focused on stopping the damage. After one hour of doing this, the bleeding resumed again, and we had to start all over again. Shayne was a real trooper and just took charge. The next morning, I noticed that the shape of my nose had changed from the constant application of pressure! Oh, and my face showed the effects of water retention (from all the I.V. fluids I was being given) and I looked like Marlon Brando from The Godfather – – not a pretty sight.
My daughter’s friend, Aliya Sunderji, a medical student, left me a note that offered me hope and perspective: “Regenerating a new body full of cells can’t be easy. Remember, you’re allowed to be tired, fed-up and selfish. These weeks will allow you space for that. Even mother nature feels gross and looks terrible during these gray, slushy days, in order to look radiant in the summer – as will you in the spring.”
And then Day +10 arrived, and things started to shift, exactly as Dr. Franke had predicted. He had drawn a smiley face on Day +12 of my calendar, and told me that it would be my “Happy Day” and, miraculously, on that day, I felt like I finally came out of the land of the living dead. Today is Day +14, and the Doctors are thrilled with my recovery! They are weaning me off all antibiotics today and plan to release me in the next couple of days. When I go home, I am expected to rest for 3 to 6 months and let my body heal.
Tough as the past two weeks have been, I must say that the quality of care in the Stem Cell unit, 14C, has been exceptional. I think it starts with the leadership of Dr. Norman Franke, who heads up the autologous stem cell transplant unit. He believes in empowering and developing his staff, and it is apparent in the way the nurses speak about him. He has created a culture where nurses are comfortable being who they are, and yet live by a shared vision of looking after their patients with single-minded dedication. The culture is one of competence and compassion. The nurses are like Mary Poppins. Regardless of the issue you have – diarrhea, sore throat, cough, fever, pneumonia, nose bleed, nausea, mouth sores, trouble sleeping, dizziness, – – they just reach into their bags and find the right remedy. Their goal is to get you through the dark side. At one point, I was lamenting that my hair was falling out. Voila! My nurse, Joanne C, set up a make-shift barber shop in the washroom and promptly shaved my head.
To Tasha – the motivator, to Linda, the vein-finder, to Denise for your warmth, to Joanne – for your competence and conversations, to the interesting Yifang and Dolma, to the refreshing Laryssa, to the caring and compassionate Alisha, to Glenna and to Fatima, to Karen – for your love, to Munno and Lauren, to Marlene, to the incredible Aylene, to the irreverent Evelyn, to Arlene, to Johanna for friendliness, to Angela for nursing excellence, to Leigh – for the feistiness factor. I cannot begin to thank you all for your care and your love. I did not think that I was going to make it through the dark days. But you refused to give up and made me believe that I could do it! What is remarkable is that you do this day and night for each of the 17 patients in the unit!
Despite being in the hospital for 2+ weeks, I have found “Silver Linings” in my “Playbook”. Some of my favourite times in the hospital have been spending dedicated time with Shayne. Some days, he comes to see me for a couple of hours at night and then goes right back to work. Yesterday, I threatened to hide under the covers so he could not find me. He still showed up and the nurse said he sat with me for a couple of hours, put me to sleep, held me close and then snuck out.
What price do you put to all this love, care and compassion?