My pain had gotten to be extreme, waking me up writhing in the morning, preventing me from sleeping, or worse, the gravity of it waking me up in the middle of the night. It would throb and seethe mostly in my right hip – a pain that emanated from deep in my bones yet would spasm through my pelvis and upper leg. It brought me to tears and it forced me to take some of the pain medication from the bottle I had from my transplant procedure. I called my parents the night before this regular check-up at Sloan-Kettering. I knew that I wouldn’t be able to handle the train and I needed a ride in. My parents were happy to oblige – my father’s first time driving into Manhattan – and I was able to stretch across the back seat with a blanket and pillow alleviating the pressure on my painful sitting bones.
My mom and I went into the appointment and the doctor asked her customary, “How are you feeling?”
“Um, okay,” was all I came back with, knowing that my eyes said it all.
“Oh no,” Dr. Moskowitz said in her sweet voice. “What’s the matter?”
Tears started to well and I hardly had the strength to hold them back. I told her how exhausted I’d been, how I had had some kind of upper respiratory infection, which really knocked me down, how I’ve felt some lymph nodes, how I’ve been having the worst pain of my life.
I couldn’t even finish the list. My mom stepped in and told her that things have been very difficult lately, that I lost my mother-in-law, and that I was very tired, angry, and frustrated.
Dr. M listened quietly in her thoughtful way and though she kept professional, I could see that she was breaking inside too. She’s young, no more than a few years older than I am, and because of that, we have a special bond with each other: two young women facing this Hodgkin’s puzzle together.
She told me that my low RBC count would require two units of red blood cells. My numbers were so low that the transfusion couldn’t even be given in the regular day hospital. I would have to go to Sloan-Kettering’s Urgent Care Center … and would I want an ambulance ride there? She even laughed herself at that request knowing how I always walk, always, and how she teases me that I do more hiking and yoga than she does. I’ll ask her about my exercise regime and she’ll say, “Should I be doing that?”
After a continued exam she was concerned about how gaunt and tired I looked. She felt some little lymph nodes in my neck and underarm but said that they were nothing remarkable, and likely could be reactionary, like anyone’s. But I could tell she was concerned. And she was not going to let this pain go unchecked. She worked to get me an emergency PET Scan the following morning. The plan was to send me to Urgent Care, wait for the units of blood then admit me as an inpatient so that the doctors could explore what was causing such a loss in red blood cells. For my count to halve in just a week was not acceptable and was cause for great concern.
I was so comforted to have my parents with me because the added concern of anemia on top of the worries I had come into the appointment with led to sheer exhaustion. Had I been by myself I may have just crawled into a ball and curled myself in the corner. They helped me get from building to building and into that dreaded Urgent Care center where the sickest of the sick cancer patients hang out.
I didn’t understand it. I knew I wasn’t feeling well, but I hadn’t felt as dizzy or debilitatingly fatigued as my numbers were showing. Just the day before, I had hiked a mile uphill with Sam Dog to our lookout. The Urgent Care nurses drew a type and screen match for the blood and we knew it would be hours before the blood bags came back from the bank. Then, each bag would have to run over the course of two hours. We were in for the long haul: I on a metal stretcher with a mattress worthy of an ironing board pad and my parents jammed into uncomfortable chairs in our little curtained cubby with extreme patient scenarios all around us.
The Urgent Care doctor came in spouting concerns about what my low blood counts could mean and told me that they would have to admit me and hold me until they could figure out what was going on: an internal bleed of some sort? This was terrifying. He told me that they secured the first PET Scan of the morning to check into the pain that brought me there in the first place. Equally terrifying – but assuring to know that we were looking into what I already knew was going on. The Revlimid wasn’t working. To me it was so obvious that my body was having a Hodgkin Disease flare. It’s a very distinct feeling. There is a certain chills-like tingling that I feel throughout my body and my fatigue becomes a heavy blanket wrapped far too tightly. It slows everything from my cognitive function to my walking stride.
I would have to be admitted into the hospital. They were working on securing me a room. As much as I persisted otherwise and promised that I’d stay in the city, that I’d come back first thing in the morning to get my PET Scan, the doctor was not having it. Can’t I just get the units of blood and leave? Why do I have to stay overnight just to get a scan? Please, let me go. I didn’t have a chance. They couldn’t leave me unmonitored with such anemia. They needed to find the cause of the blood loss. The idea of a night in the hospital was mortifying.
I changed into the requisite hospital Johnny and curled up with the paper-thin pulpy blanket they provided. Those Johnny gowns couldn’t be thinner if they tried and they always hang at the perfect length for the chest pocket opening to be right at nipple level leaving my booby the chance to unknowingly peek out. The “sleeves” never button up right and the back ties either slip apart at the most inopportune times or knot up so tightly that it takes some patient Girl Scout ingenuity to get out of the thing.
I endured more needles and blood draws and begrudgingly rolled over for a rectal exam, the lubed and gloved fingers of a stranger entering me and searching my bowels for a sample of stool or evidence of an intestinal tear. I had no strength and the feeling of defeat that once again I was to be poked and prodded like an animal was disheartening. I locked eyes with my mother with a look of pain and longing to be anywhere but there.
More time passed and my mom persisted with the nurse that my Complete Blood Count (CBC) needed to be rerun. That had been Dr. Moskowtiz’s request as well and we all assumed that it had been done. But when questioned, for some reason this had never been ordered. After some push, the doctor and nurse in charge of my care agreed to ask the lab to recount my blood levels. We were still waiting for the bags of blood from the bank anyway. I also still couldn’t eat in case by chance they had to do a test that required fasting. It was the evening by this point.
A few minutes later, we heard the ER doc on the phone at the command station saying: “I can’t believe it. I’ve never seen this before.” He pushed back the curtain to the cubby where my parents and I camped and told us that my red blood cell count was 9–far from the 5 that had registered earlier that morning. I was still slightly anemic, but that was normal for me. In fact, I was nowhere in the danger zone. The ER doc, with his heavy Russian accent, told me that Dr. Moskowtiz was on the phone and wanted to speak with me. I shimmied to the central nursing station in my non-slip socks with my fleece zipped over my risqué hospital gown and leaned over the counter to grab the phone and chat with her.
She was shocked and so apologetic that it took them so long to identify this issue. She was under the impression that they had verified the numbers hours earlier. She explained how rare it is to have just one number be out of whack – how if a sample is faulty, usually all the blood counts are unmistakably incorrect. At this point, all I was concerned with was getting outta there. She confirmed that yes, I wouldn’t have to stay overnight in the hospital, but that I would need to return in the morning for a PET Scan. Even though my blood cell levels were decent, I was still having Hodgkin symptoms and a lot of pain.
My parents and I were able to secure at room at one of our old stomping grounds, the Miracle House, and we spent the overnight in the city, unplanned. The organization and the accommodations they provide truly live up to the “Miracle” name. My parents were troopers. We visited CVS for essentials and a diner for a late dinner of French toast and hydromorphone for me. I slept no more than two hours. I was up all night tossing and turning with pain and worry. Half a book and episodes of Conan and Seinfeld couldn’t make it go away.
We were up and in a cab crossing through Central Park from Hell’s Kitchen to the Upper East Side by 7:30am. Fingers were crossed that my PET Scan appointment was kept for me even though I wasn’t an inpatient as it was initially booked. There were no problems. It wasn’t until I was in that scanning tunnel, arms overhead and rolls of towels tucked alongside my head so that I wouldn’t move that then I fell asleep. I was overwhelmed, exhausted but comforted by the heated blanket they draped over me before starting the test. It’s a sad testament that the whir of a PET Scan taking 3D pictures of my body was this adventure’s magic sleep trigger.
I got a call from Dr. Moskowitz that evening. I listened and took notes on a scrap envelope at our kitchen island. Craig stood by reading over my shoulder. I wrote:
Lymphoma is growing.
Obvious Revlimid not working as we hoped it would.
Areas on right hip, sacrum, and vertebrate lighting up more significantly.
New hot spots in pelvis, left hip and abdomen.
This is cause of pain.
It is in my bones and on my bones.
Don’t start 2nd cycle of Revlimid pills.
Stronger chemo needed to melt disease.
It won’t cure me, but will get things under control - will make me more comfortable.
Start prednisone steroid immediately.
I knew. I could feel every bit of it increasing in anger, flaring against me. I knew that the war inside was getting heated.
[ “It’s been a long December and there’s reason to believe that maybe this year will be better than the last. … The smell of hospitals in winter and the feeling that it's all a lot of oysters, but no pearls. If you think that you might come to California, I think you should.” – Counting Crows ]
So we did.