I had gotten my PET and CT scans only the day before but as I know from past experience, initial results are available nearly instantaneously, it's just a matter of whether anyone decides to share them. He cautioned that he does not have the final report from the radiology team, but that he wanted me to know that on initial review it appears I've had a "very favorable response" to the GND chemo. This means the cancer, or at least the vast majority of it, is gone. We celebrated with buffalo chicken pizza. I will find out more details on Tuesday, but this is fantastic assurance that everything I have endured and everything I've been working so hard at over the past few months has been worth it.
Now my sister is scheduled for her own donor appointment with the nurse practitioner on Tuesday. The ball is rolling. This is assuring, exciting, scary and unfathomable all at once. Like a circus artist, it feels as if I'm balancing on top of a rolling ball trying desperately to shift my weight and keep my footing as it changes speed and direction along this unpredictable course. I was stopped against a wall for a bit there, but now I'm again on the move.
The day of my scans, we took the 6:23 a.m. New Haven train into NYC after an hour drive from our home. I was tremendously tired and both eager and anxious for the test I had been "studying" for over these past weeks. The train was filled with CT to NYC commuters. Lots of iPad clutching, dry cleaner pressed business suits on board, all zoned into their normal morning routine. Though the train was jam packed, hardly anyone spoke, all of us getting our early morning bearings, adjusting to the light of another day and whatever challenges and opportunities it held.
Our day had its challenges: getting to step into one of the hospital rooms I will be living in and taking in how close the four walls really are, navigating the bus transit system, walking block after block on no food or fluids per pre-test orders, drinking more than 1,000 ML of pink oral contrast. However, it also had some huge opportunities.
To make the most of our trek in, we had scheduled a meeting at a possible apartment. Craig and some of our NYC familiar friends had been doing Craigslist and Google sleuthing for weeks to try to find a place for Craig to live in/rent while I am an inpatient for more than a month. This way he would not have to sleep on the oh-so-cozy looking pull-out chair in my hospital room with gloves and a mask on every night. It would also provide a place for my family to crash on the days that they come down to visit. As one just might assume, NYC rental rates are outrageous and the unknowns of my case makes it difficult to commit to a lease or a set timeframe. Could be 20 days. Could be 120 days.
However, we are not the first people to be in this situation and we found an organization that caters to people exactly like us and could not be more astounded with how ideally they function. Most appropriately, it is called Miracle House. We met the patient coordinator, Majo – a fantastically animated, sporty and witty Slovakian – at the high-rise apartment complex where the five three-bedroom apartments operated by Miracle House are located, just 3 blocks from Times Square. Though it isn't free (it'll be like a second mortgage payment) the nightly rate is the most affordable we could find and what comes with that rate actually brought us both to tears.
Majo is one of the nicest most comforting people either of us had ever met. To every question we had, his response was "no problem, we'll make it work." We don't have a firm entry or exit date. We don't know who exactly will be sleeping there on any given night. We don't know if I'll need to be living there after I'm discharged. It didn't matter. They will make space for us and providing a solution to those scenarios is why the organization exists.
Miracle House was founded 20 years ago with the caregivers of HIV/AIDS patients in mind. Patients were flocking to NYC in droves as that was the place to find the life-saving treatment that they needed. However, there was nowhere for their caregivers to stay that was necessarily affordable and safe – the last stress anyone needs when a loved one is faced with a catastrophic illness. Since then, it has expanded its mission to people traveling to receive any type of critical medical treatment in the city – a vast majority whom are cancer patients ... many being treated at Sloan for its world-class reputation.
We had found housing that will put patients up (like the American Cancer Society's Hope Lodge where we'll be likely be living after I am discharged), but nowhere that would put caregivers up without the patient there. The droves of research to try to find some kind of place that we could afford on top of everything else was taking a toll on Craig. Finding this place is a huge piece of the puzzle now in place. My family will have a furnished bedroom with a private bathroom and a suite style shared kitchen and living room with two other sets of caregivers. It's bare bones for sure, but all of the essentials are there.
It puts me at great ease knowing that those that I love so much will also be being taken care of. Not only will the Miracle House apartment provide a safe, comfortable place for my husband and our parents/siblings/friends to sleep, but they will also have access to all the complex's amenities, including a gym, pool, laundry room, theater, rooftop deck, etc. The pantry is stocked with go-to items provided by the organization. Volunteers take whomever would like to go out to complimentary breakfast every morning, dinner three nights a week, and Saturday brunch at a nearby diner.
Those taking part in the meals are people from all over the country/world and are themselves or have a loved one going through a difficult medical treatment. The purpose of volunteer facilitated community meals is for people to have others to relate to, laugh with, cry with, and lean on. There is everything from Reiki services to counseling provided free-of-charge to those living at Miracle House. Again, it is a Godsend and I hope that it will be healing for my family who is grappling with such a traumatic undertaking. We'll all be away from home and that's not easy.
I've said this before, but I think the job of the caregivers is much more difficult in these situations. I know how I feel. I know I can do this. I know what's going through my mind and what's happening in my body, whereas they have to watch and wonder as I go through my ups and downs pushing themselves to stay strong for me and to do whatever they can to alleviate my hurt. I can only hope that the Miracle House will allow them to unwind and bitch and cry about me without having me in earshot. Let's face it, I'm not always an easy patient.
Once that hurdle was crossed it was the 50-minute bus ride across Manhattan over to Sloan's Imaging Center for my scans. The facility was beautiful. Opened just a year-and-a-half ago it was bright, clean and modern. The waiting room was full of patients lounging in the couches and chairs sipping out of their clear plastic bottles of pink liquid which filled their intestines with dye to be picked up via whichever machine they'd be tested in.
For me, it's old hat, this being my sixth PET Scan in just 14 months. However, the process has been a little different at each facility. And, I was also photographed via CT Scan in the same machine. After a nurse accessed my port and injected me with the normal radioactive substance, I was left alone in a little room and given 45 minutes to drink the 1,025 ML of "Gastroview" to make the radioactive material visible. It tasted like raspberry Crystal Light. I cuddled up with the fresh-from-the-warmer blanket they gave me and started reading The Girl With the Dragon Tattoo.
The nurse came back to get me and I was led into the scanning room. I climbed onto the familiar narrow cradle and took in the tunnel ahead of me with a deep breath. I laid on my back under a blanket, my madras skirt at my ankles so that its metal snaps wouldn't affect the picture. On the ceiling was a huge, round hand painted treetop scene that made it appear as if I was laying under the beautiful green of a tree and looking through its leaves at the sun.
More injections came through my port which filled my body with heat and made me feel like I wet myself ... a side effect they always warn about. Then, arms interlocked above my head and my legs dangled over a pyramid shaped bolster, into the tunnel I went. For 25 minutes the machine whirred around me. After just about three of those minutes I was sound asleep and woke up to the jolt of the technician's voice over the speaker:
"Just a couple more minutes. You doing okay, Karin?"
"Yup. I am okay," I replied.
Not only okay, but feeling ready for the next step.