It’s Monday, six days post RCHOP #5 and I’m alone in Dr. Ashkenazi’s office at Shaare Tzedek Medical Center. I’m exhausted and haven’t slept in six days. The neupogen shot coupled with the prednisone on Friday caused tremendous pain over Shabbat. So much so, that for the first time since I started treatment, I needed to take medication for the pain. I couldn’t walk or stand for Havdala on Saturday night and the kids were having meltdown after meltdown as I physically got worse and worse in front of their eyes.
Tuesdays are my Shaare Tzedek days but Dr. Ashkenazi has a conference so he moved my appointment up a day. Gaby wakes up sick on Monday morning and it’s too late to find someone else to take me to my appointment. He drops me off then goes home to sleep, eventually pack he’ll pack up and move in with his parents for a couple of days.
I walk tentatively from the car inside the new building and through the metal detectors. The shoulder straps on my knapsack dig into my back and I wince in pain, keeping my head down as I focus on my feet. I hug the wall for balance, I feel lightheaded and spaced out and pray I don’t pass out. I’m thankful that I don’t have to wait long for the elevator and soon I arrive at the unit on the 6th floor. I press the button for my number and collapse into a chair, I close my eyes.
Mondays in the hematology-oncology day clinic is a different world. I’m disoriented by the drastic differences around me. I’m #152 today as I glance at my red bracelet after checking in, I find two empty seats in the crowded waiting room. I SMS Gaby to let him know I’m in the unit and to make sure he made it home okay, he is back in bed. I use my knapsack as a pillow and try to nap, alert for each number that’s called. Room #1 is the nurses station, room #2 to get your blood drawn. There’s a giant computer screen where we are all just numbers, little boxes stacked neatly in a row depending on the purpose of your visit. I noticed my number under room 1, room 2 and underneath Dr. Ashkenazi’s name. I’m too tired to alert the receptionists to the error. With a PICC line, I never need to go to room #2. My number is called and I take my bag with me through the doors where wilted streamers – survivors from Purim – hang weakly by a thread. I stop outside the nurses office and wait for the number before me to finish, an elderly Arab man who still needs to weigh himself before they order up his treatment IV.
My nurse for today waves me into the room and I hesitate for a minute. Usually I check in, get my temperature and blood pressure taken, talk for a few minutes about how I feel and get my bracelet put on me. Not today. The unit is too hectic for check in and my nurse needs to clean and sterilize my PICC line and take my blood ASAP. She is in a hurry and I start to take off my shirt but she stops me, no time for that today. She pulls up the sleeve so that my PICC line is exposed and then pulls the curtain around us for privacy. She asks me questions about how I’m doing and I try not to cry. I shrug because we need more help and I don’t know how to ask. I shrug because once again the children had a terrible Shabbat. I shrug because on Friday night my 9 year old daughter had a nightmare that I was a corpse.
“You’ve made it through 5 RCHOP’s!! That’s really, really amazing! When is your next one?”
She’s excited like I just completed majority of the course work for a degree. I’m confused by her cheerleading. Is this an accomplishment? What exactly is the accomplishment? That I’m still breathing?
“When’s your next round?” she asks.
The bed next to us is a mess of medical supplies, syringes and gauze pads. Each nurse has their own style when it comes to the PICC line. Today’s nurse is more like the absentminded professor. Realizing that she doesn’t have the vials of Heparin, she disappears and I sit and wait, my left arm resting at an awkward angle on the bed. After fifteen minutes, the nurse doing check in peeks behind the curtain and asks what I’m doing. With my PICC line exposed and the bed a war zone of supplies, I would think it were obvious but I know this nurse is young and stressed and so I tell her that my nurse went to get the Heparin. I’m getting cold and wish she’d hurry back so I can put my sweatshirt back on. Patients keep poking their head in to yell at the nurse; no one has patience today she responds back. They are all waiting for their treatment, which have been ordered from somewhere in the building but haven’t arrived yet in the unit. In my head, there are men and women in HAZMAT suits working in the basement, filling up orders of IV treatments like line cooks wiping down clear plastic bags of poison instead of plates of protein.
My nurse returns and sits opposite me on a chair. She needs to reorient herself and she swivels the cart with medical supplies. More alcohol gauze pads, new blue plugs for the PICC line, adhesive, syringe, saline get piled up on the bed. Finally, she puts on gloves and is ready to flush both lines and draw blood. I look away and she remembers her question.
“When is your next round?” she asks.
“Three days before Pesach,” I respond.
“I’m sorry, but you know you’re not going to have a good Pesach this year.”
I already know that Pesach is going to be hard, but it was refreshing to hear it from someone else. I alternate between zoning out and answering questions. It’s time to switch the bandage and, like every week, the threads of the stitches are stuck. She apologizes as she pulls, the stitches rip my skin and I gasp in pain. I resist telling her to use the tweezers in one of the kits to gingerly pull the threads from the bandage. It’s not her style, only one nurse even bothered to do it that way and I’ve had the PICC line since December. There’s no time to be careful, the ward is full and everyone needs something. Who cares that it hurts me? She tells me that I have the option to remove the PICC line whenever I want, that if it’s really bothering my life I don’t need it. I tell her that Dr. Ashkenazi wants it in there and so I’m just going to suffer through.
Finally, it’s over and I go back outside to the waiting room to wait for my appointment with Dr. Ashkenazi. It takes minimum one hour to get the blood test results so I settle in and try to sleep. The crowd has thinned and treatments inside have already begun. I sit and stare at the numbers on the screen and wait to be called.