The Philly Chronicles – Trek Four, Part B – The First Treatment
The terrain of hope is rocky. My excitement to start the treatment phase sustained me through an uneventful flight from Oregon to Philadelphia. I went from plane to train to the hospital campus to meet an incoming candidate for dinner. Her medical intake had started that day at 9 a.m., making our date for 5:30 seem reasonable. She emailed a series of apologetic notes of delay finally being released from her day of screening tests at 6:15. I recognized her easily by the bandage showing where she had last been punctured. A shared meal of falafel from one of the many food carts was delightful as we exchanged information, motivations and snippets of life stories – cancer serving as the frame.
We bid goodnight and I began my two-mile walk towards my housing with regrettably over packed luggage. Hip and knee pain had me whispering ‘ouch’ with every step. The walk is wonderful, though. The first quarter crosses the smaller of the two rivers that encases downtown Philly. While crossing over the Schuylkill and the expanse of expressways paralleling the river there is an amazing view of down town, a striking skyline. At dusk there is a line up of folks taking photos. The next stretch is dense city, mixed residential and commerce, the standard three stories allowing peaks of the skyline on the left.
The following 7 blocks are not too exciting but then the street life starts accelerating. It is not a boring walk. Public art is everywhere. You can walk the same city block many times finding new things to admire between people watching, architecture and art. Murals dominate. As a quilter I am quick to note that the majority of quilts and murals are, frankly, not too exciting. In Philly I have yet to see a mural that has not met the mark for art. They tend to be three stories high and broad and from what I gather the Philly mural project has engaged a long-term team of artists to guide the community process for each site. The commitment to art and storytelling fuses brightly in Philadelphia. 
In no time, I am at my own structure, juggling luggage, keys, and memory to get in the door, up the three flights and then, ‘Hello, roomie – I’m back!!!!”
June 5, 2013: The next morning I was to report in at 10 a.m. I was reluctant to end my long night of sleep – the bed felt too good. Twenty minutes before departure I got up forfeiting food shopping in favor of a quick shower. I should be done early enough to meet food needs. The walk was slow – my aching joints create a pacing that I am still not used to. Nonetheless, I arrived on time.
My handler was there by 10:05. The screening vial of blood was in motion by 10:15 but that would be the last thing on time for the day. Things started going awry. The person that normally did the physicals while patients were being prepped for the infusion was off. I needed to abandon my chemo post and relocate for the doctor. The doctor was busy. I was set in a typically dour examination room to wait and wait I did. After 15 minutes I opened the door to mitigate the stress of the confined space. After 30 minutes time started passing dramatically more slowly, then 45 minutes, then 60 minutes – tension settled in. I was now taking a roller-coaster plunge into the darker side of hope – despair. Why was I here? What life was this? I distracted myself by listing all the remaining things that could go wrong that day sidelining chemo, putting the scripted protocol off kilter and exiting me before even starting this foolish Phase One path.
The charm of the arriving doctor evened things out some. The exam was done in minutes, I was cleared for chemo and a new nurse sent me back to the chemo-waiting lounge. Like I knew where that was in this inner maze of the building. I stumbled back, unraveling. It was now past noon and it was clear that these accumulating delays meant that I needed to find food before I was strapped into my chair for god knows how many hours. I also needed to breathe a moment of fresh air of the delightful day outside if I was to regain calm.
I got a small bite to eat in the sunny warmth then reported back in only to be told, “sorry, there are computer problems preventing your clearance for chemo from showing up.” I convinced them to call me when the problem was resolved and ran outside. I found a patio that allowed me to stay close to my bank of elevators but enjoy a sense of normalcy. It would be ok, I kept assuring myself.
The call came clearing me and at 2:00 I was being seated in my chemo room. The next struggle presented itself. One of my infused drugs, a drug I hate and have had for over a year, would need to be infused over 90 minutes instead of 30 because they insisted on treating me as if I had never had it before. That was absurd. It was getting late. I challenged the edict requiring phone calls. Meanwhile the nurses were being sprightly in hearing me beg them to get my port accessed, start the pre-meds and leave me to the negotiations.
The nurses were wonderful and did their best to zip my infusions through but the mandated avistan drip speed from 30 to 90 minutes held firm because of the stupid research protocol. I hate rules based on weak footing. Someone showed a lack of imagination when crafting that section, and I lose another 60 minutes to hospital life. It adds up.
But protocols, once written, cannot be changed with ease. A research protocol risks termination with every change. I got to fume at what I experienced, which is genuinely frustrating, knowing when calmer that it is just the architecture of checks and balances within research. It is what you sign on to. Hope and frustration!
Infusion done, released, I delight at the smells of a tree in bloom. I breathe in life. Outside I am content, confined I agitate. Computer systems went down, the wrong people had a day off and the relentless rules that indicate you are the property of research combined to make my first infusion an all day affair. It was a beautiful day just as it was beautiful the day I flew. It’s summer, time to be outside but not for this research subject. I am relegated to the various benches for the permanently waiting.
Vaccine day – June 6, 2013: I trudged back to the research building. This day was cool and gray. Without the usual cushion of steroids infused with yesterday’s chemo, I felt gray as well. (Steroids are barred since they suppress the immune system and this trial is about building the patient up.) I had not experienced this level of exhaustion for quite a long time. Dressing that morning required breaks lying down.
The vaccines were a big moment, I had worked for 20 months to get to this point but having emotions was beyond me. I was too tired. I arrived to my waiting area the required 30 minutes early. The Paris Open on TV held my attention as I also tracked the room. Not many people, in fact just one other woman roughly my age quietly speaking with a friend. Hmmm. I peaked to see if she had the same envelope I did but nothing showed. The doctor came out saying, “Good, you are both here.” He graciously came over to me, the vaccine first-timer, to shake hands and assure me this would be easy. Then he took time with the other woman. As soon as he hurried out “to get things started,” we exchanged names and emails before we were whisked to our different rooms. She was the patient enrolled immediately prior to me, the second in our cohort. There was little time for other details as a parade was starting.
At the head was the ever-cheery Dr Tanyi, then support staff with coolers, clipboards, then rolling machines. We were told to get in line as we walked down a hall to a new section of rooms. The other woman urged me to go first knowing that first time jitters would only settle down once it was done. I was ushered into a tiny room now filled with parade participants plus some new folks. I didn’t know what to do until someone indicated that I should get in the bed. A bed, I hadn’t expected that. Given my exhaustion the sight was most welcome. I was shaking hands with old and new staff while trying to maintain some dignity as they all formed a tight, tight, tight semi-circle around me. (Think room as small as an elevator now including a bed, equipment and 8 people.) My lead nurse was holding a large syringe in the air. I make it my business never to look at needles but in this tiny room it loomed large. The other one must still be in the cooler.
I lay down, draped with a blanket as I scooted my skirt down. The doctor kept patting me saying, “This will be just fine, you’ll see” then quickly turning to a peer, narrating the process. She was being trained in, it turned out, to take over while Dr Tanyi was gone the next month. Damn, I don’t want her to be trained in on me! My undies were protected with napkins as goop was placed on my inner thighs. The ultrasound beeped to my right as we all waited for the radiologist to arrive. It was a long five minutes of trying to avoid looking at a needle held high – of trying to preside with grace as the centerpiece of the room. Radiologist in place, I fixated on the ultrasound screen wondering if we might find a baby but the search was for lymph nodes. “Ah”, I heard but I saw little amid the gray striated screen. When would the needle go in? Ouch, it was going in and that I could see on the screen. It was a slow process of everyone agreeing that it truly was in the lymph node and then that vaccination was done. Next side and it was now the doctor-in-trainings turn. I would have loved a sound bubble rather than hearing the list of do’s and don’ts as a much, much slower process started on my right. Was she in the node – were they really going to discuss this endlessly with the needle in me? Finally, the slightly more painful vaccination on the right was done.
The parade director put the sides up on my bed, and wheeled me from the vaccine room into another room for observation over the next hour. At 2:30, I was dismissed from the bed and faced five hours of walking around counting down until time to return for a blood draw. The weather had shifted with tropical storm Andrea arriving. I had a list of places to explore but my bag was heavy and I wanted to lie down. The University of Pennsylvania is a beautiful campus but there was no place comfortable for my post-chemo body for more than a few minutes. The temperature kept dropping. The clouds grew more ominous. I wanted a bed.
Eventually I got the 7:10 pm (protocol forgot to allow a window) blood draw and started my slog home in a drizzle wishing I hadn’t been so confident this morning that it wouldn’t rain. Home at 8, too tired to eat I went straight to bed sleeping until 9:30 the next morning. I awoke feeling better. In fact, my hip pain of April and May seemed gone. I was still tired with nausea but within acceptable limits. I relaxed with my roommate, packed then headed out for the final blood draw at 1:10 p.m. exactly. With all my luggage and tempestuous rains starting outdoors I grabbed the train to the airport. It was a direct flight home escaping just before the storm hit full force, arriving into the arms and care of my husband. Tired, nauseous but miraculously clear of hip pain – a benefit it seemed of the cytoxan chemo that, apparently, can be used for arthritis. My first treatment trek was done.
Vacation meant strolls and delightful meals out in Philly, the city beyond hospitals.
Last week was tough. Too many consults with doctors that crushed our few hopes. I am inoperable in the abdomen. I am inoperable in the chest. I am too high risk for radiation. Chemo is the only option. First choice chemo, doxil/caelyx, is available in every other country but ours as big pharma has created a supply line collapse because of unregulated greed. (I just heard that there are no drugs available to treat TB in this country – that should scare everyone into action. Government needs to step in.)
livingly dying 