It's been a tumultuous past few days to say the least. I'm still grappling with the fact that the cancer is still there and even more so that it's rearing its head in new places ... the little bastard. However, the shock and disappointment has turned into a sharper focus and an even stiffer determination to rid my body of it. The Bendamustine just isn't the drug to do it. We're running pretty low on options, but there is still an option. What I really need is the immunotherapy that the allogeneic stem cell transplant will provide. However, I can't get that until I'm in remission. This is currently a challenge.
T
his past Wednesday was a NYC family trip a la the Griswolds minus my little brother who is surely studying hard at school. Despite the chilling cold, my parents, sister and I spent the morning walking around the holiday market and watching the ice skaters at Bryant Park. It was beautiful but also mildly torturous as snaking around the artist booths were the incredible smells of kettle corn, hot cocoa, crepes and sausage dogs. Normally this would be wondrous, but I was on a six-hour fast before my PET Scan. A water-only diet equals sheer torture.
We then walked along 5th Ave. admiring the holiday windows down to Rockefellar where we got to see the lights on the big tree and it was there that I left my family to further explore while I hopped in a cab to Sloan-Kettering. There was no need for everyone to sit in the waiting room with me. And, it was a good thing they didn't as the nuclear medicine center was running nearly two hours late. It certainly gave me plenty of time to thaw from the raw cold we had been in.
I drank the red concoction yet again but it actually tasted much better. The nurse alerted me that they no longer use Crystal Light, but instead, a raspberry flavor mixture from Starbucks. Ah, luxury. They started an IV in my arm and injected the radioactive fluid that would illuminate my innards and there I sat reading my book for an hour until it was time to head into the tunnel.
It's wildly uncomfortable in there and for some reason I had more anxiety than I've ever had. I laid on the narrow table and they gave me a blanket to cover myself while I shimmied my pants down past my knees so that my metallic zipper and buttons wouldn't affect things. This is normal protocol, but on that day, I was also wearing a set of long underwear as it was a high of 29 degrees. Pulling all of these layers down to the tops of my fuzzy winter boots while on my back without exposing myself to the tech was an acrobatic feat.
Finally all was settled and I lay with my arms above my head. Thirty minutes without moving. The CT Scan came first where they pushed me in and out of the tube a couple of times to snap photos then injected dye into my IV, which sends an instant flush of heat through the body. It made me feel like I had just wet myself, which I very well could have after drinking all of that fluid. But I didn't. It's a normal reaction.
Normally I just fall asleep once the machine starts whirring for the PET Scan portion. But this time, I wanted out. For some reason, the tube seemed smaller than ever, the velcro straps tighter than ever around my legs, and I wanted to just scream. Suddenly I had to itch everything and had a frog in my throat that I couldn't clear. All I could do was think of
Ze Frank's chillout song reprise: "Hey, you're okay. You'll be fine. Just breathe." over and over and over until the narrow table pulled me out of the tube for the final time. Maybe deep inside I knew that in fact I wasn't okay.
I felt even worse afterward. All of the dye and contrast and such made me nauseous on an empty stomach and I just wanted to meet back up with my family. It was now 5:30 p.m. Dark. Freezing, freezing cold. And worst of all, shift change time for cabbies. No one wants to get someone in their car for too long of a trip before it's their time to go home. Finally, I was able to hail one and huddled into its warmth and the kindness of the driver as we remarked about the 99 cent pizza slice joint and how their business plan could possibly work.
I found my family back at Grand Central, which was a bustling mania of commuters. I couldn't even speak to them before I shoved a few bites of mango salsa chicken burrito down my throat. I parked it next to a homeless man and his big garbage bag as he rocked, talked and sang to himself. I did not care in the least I was so hungry and so tired. The train ride then car ride home was peaceful and full of laughter as I merged in and out of fits of sleep and kookiness.
Not so peaceful was my back. It had been in undulating pain in seething spurts for about a week, aggravated even more by the long periods of sitting and stillness. I had taken a sudden turn for the worse after my ultra positive feelings of just a week prior. In the evening especially I had developed a pain at the top of my left leg that would shoot and pulse all the way down the length of it and leave me helpless with no stretch that would touch it. The pain woke me up that night at my parents' house as it had for several nights before. To add insult to injury, I've been sporting a mirror pain on my right upper back for about three weeks now. Again, not constant, but when it comes, it lets you know it's there.
Thursday was spent nursing this and waiting in agony for the doctor to call with the scan results. It's not like that's a difficult thing at all ... . It's not like I took my cell phone into the bathroom with me every time. It's not like I wrapped it up in a towel and balanced it on the tub edge when I just couldn't put off taking a shower any longer. It's not like I walked around with it in my back pocket all day and checked the screen every 20 minutes. Oh wait, yes I did.
It wasn't until nearly 7 p.m. that I got the call. A call I probably could have done without. At that point I knew that it was going to be bad. In my vast experience when I don't hear results until very late in the day that means the doctor has been conferring with his/her colleagues, looking it over thoroughly, maybe grappling with how to break the news. I ran up to Craig's workshop above the garage where he was doing some woodwork and put the phone on speaker so that we could each hear what Dr. Moskowitz had to say. It was freezing up there but it didn't matter because as soon as she said that the scans looked "puzzling," my whole body went numb.
Craig diligently took notes on a pink lined Post-It note while I mumbled back "uh huhs" and "hmmms" back to her. After some beating around the bush, the report was that previously involved lymph nodes had shrunk some in size, but were still showing Hodgkin's activity. In addition, some new hot spots appeared on my vertebrate and left rib. This was stunning and nauseating to hear.
When I told her about the back pain – something I probably should have reported earlier but didn't want to deal with – she was highly concerned. She wanted to make sure that the cancer lighting up on my vertebrate was not compressing any nerves. If it was, I could be left with permanent weakness and irreversible damage to my body. It was decided that I would go back to Sloan the next morning as early as possible and enter through their Urgent Care/Emergency area where I would need to get an urgent MRI. If it showed that nerve damage was occurring, immediate hospital admission and radiation to those areas would be needed. Dr. Moskowitz apologized in advance that it wouldn't be a fast nor pleasant experience, but that it was the quickest way to get immediate scan admission. Again, more nausea and bewilderment.
After I hung up the phone and put away my "professional" brave voice I lost it. There was a lot of crying, a lot of F-bombs thrown. Some kicking and doubling over. Craig even reverted to showing me pictures of puppies but even that couldn't console me. He was also at a loss and visibly upset. I couldn't even function. I just curled up in the corner of the couch and turned on the TV. To my delight,
Charlie Brown Christmas was on and I lost myself in the story's innocence.
Seemingly unconsciously Craig and I packed a suitcase in anticipation for a possible long hospital stay and were on the road back to the city, this time via car, at 5:30 a.m. We arrived at Urgent Care by 8:30 a.m. so the craziness had not yet set in. My nurse was so incredibly kind and kept reporting back to me on what the status of things were. We were moved from a curtained room with a bed to a curtained room (or maybe more appropriately, closet) with a recliner. There was a TV and we had the laptop on which we watched movies and stupid online videos. After two hours I saw the ER doctor. After four hours I was transferred via wheelchair to the MRI area of the hospital.
Somehow previous to this, I had managed to avoid the need for an MRI scan (Magnetic Resonance Imaging). It uses a giant magnetic field to align the magnetization of atoms in the body and reveal pictures of detailed internal structures. I was vaguely prepared for how narrow and deep the machine's tunnel would be, but I was not prepared for how loud it was. I had to remove all metal and was scanned with a wand like at the airport. They gave me ear plugs to shove in and once again I had to lay on the narrow shelf. My head was between two foam blocks and they stuck even more foam between those and my temples to make it very firm. I was strapped down, given a pressure bulb to squeeze if I needed help and told to lie very, very still ... no deep breaths, no shallow breaths. When they pulled me out to put in the contrast midway through, I was told to remember not to move then either.
I felt like a Chilean miner being pulled out from underground in that narrow capsule. Afterward, I fact checked my feelings. The MRI machine tube has just a 24-inch diameter. The miner's escape capsule had an inside diameter of 21 inches. My comparison wasn't that far off. But if they could do it then I could do it, squeezed in there with eggshell colored plastic surrounding my entire body just 8 inches or so from my face. It took everything in me to not freak the F out. And I am a petite person with no claustrophobic tendencies. It felt like being buried alive.
The sweet accompaniment to it all was the pounding of jackhammers all around me in a jarring and inconsistent symphony of sound. The ear plugs were a joke. The magnets were so loud as they spun and moved and I could actually feel the magnetic force field enveloping my body. It was one of the longest 40 minute snippets of my life. And I had thought first period high school pre-calc was bad.
But I made it through ... snowflake print Johnny over skinny jeans and all. As is everything else, it was only temporary. My biggest concentration during it was remaining as still as I possibly could for fear of messing up the picture and having to repeat the scan. I was wheeled back down by a sweet, sweet man named Richard to the pod closet in which Craig was waiting.
Another two hours and the doctor came to tell me that the radiologists had read the results and that things looked clear. There was no immediate danger to any of my nerves. It's likely that the pain I've been experiencing is from shifting disks in my back pinching nerves intermittently. It seemed that the doctor and the nurse were just as excited as we were and were eager to expedite our discharge.
Once again, I hadn't been able to eat and Craig had only picked at the breakfast box we had been given. We both randomly wanted Pizzeria Uno so badly and for some reason thought that getting off a mall exit off of I-684 on the Friday night before Christmas was a good idea. We sat in gridlock adding another hour to our ride but the deep dish pie and Caesar salad was so worth it. We slept very hard Friday night when we finally made it back home.
While all of this has been happening, my oncologist has been writing an individual study specific to my case in the hopes of obtaining a yet-to-be FDA approved drug on a compassionate use basis. The drug is called SGN-35. It's a targeted missile drug, unlike normal chemotherapy and different in its makeup than anything I've ever had before. It actually seeks out and destroys the type of cells known to exist in Hodgkin's rather than just arbitrarily attacking all fast-growing cells in the body.
SGN-35 is a hot ticket drug that was all the rage at this year's American Society of Hematologists conference and in Scientific American magazine. Dr. Dailey, Dr. Cooper, and all the doctors at Sloan have mentioned it to me as the next step should the Bendamustine prove ineffective – which apparently it has.
The drug is a huge breakthrough that's very close to being a mainstream treatment for Hodgkin's patients. However, it's not there yet and there are no open clinical trials anywhere in the nation that I qualify for. The hope now is that the pharmaceutical company that possesses it will have compassion for my situation and release it into the hands of my doctors. Right now, Dr. Moskowitz is diligently making my case. And here I sit doing what I do best ... waiting.
On Thursday, the day before Christmas Eve, it's back down to NYC to find out the verdict and hash out a "plan" (a word I use only in the loosest sense possible).
