Chapter 12: ICE ICE Baby
So why ICE back in Syracuse? A very simple answer: the nurses. You may have noticed that when I have mentioned nurses to this point it is in a positive light. Let me amplify this: nurses are one of the great heroes of my cancer story. When I was in the hospital trying to get my initial diagnosis I spent a lot of time talking with nurses. They were patient, filled with humor, and supportive. After my first chemo treatment, they began posting signs with my platelet counts on my room’s window. They cheered me on as I did laps around the oncology ward. They set aside a room for me to teach my class in. They were my advocates with the doctors. They showed me the difference between what they coined as the “nursing approach” versus the “medical approach.” The nursing approach was to support the whole patient. The medical approach was diagnose and treat. Clearly both are needed, but if these models could merge, it would go a long way to improving medical care in this country.
In any case, ICE was different than ABVD. It was an in-patient chemo. So for three rounds, I would check into the hospital on Tuesday, and go home Friday. For that entire time I would be tied to an IV pump hooked up to my port. One of the nurses I was talking to was recently transferred from pediatric cancer. He said the kids all named and decorated their pump poles. I shared this with my wife via text while she was at a Bunco party (think the modern version of a bridge club but with dice and a lot more alcohol). A few minutes later and the text announced the decision of the group. My IV stand was now Bambi the Pole Dancer, and beads would be forthcoming.
I have to say, the first round of ICE wasn’t all that bad…while I was in the hospital. After I got home, I understood what they meant by the sledgehammer. I realize most of the time when folks asked how I was feeling they weren’t looking for more than an “OK” or “bleck,” and some asked it because they were not sure what else to ask. However, I’ve always had a hard time answering my more analytical friends and colleagues who take precision as somewhat a point of pride. The major problem with describing the side effects of chemo is that in many cases, these are the first time you have ever felt like that. “Tired” is just different than “I feel fine, lie down, and an hour later I am terrified while fighting for consciousness.” And “queasy” doesn’t quite cover the whole pissed off bowling ball thing mentioned in the section on Neulasta.
So, it was with a great sense of relief that I realized two days after I came home from my first ICE treatment that I knew exactly the sensation I was feeling: hungover. Now I know to many of you, this is in and of itself a less than precise description, but you have to understand that I’ve only been hungover four times in my life. Also, I’m pretty sure one of them was just me trying to convince myself I was hungover because I was a teenager, and that would be a rite of passage. No, this was a very specific hungover. This was my freshman-year-of-college hungover.
On a Sunday night mid-first semester my floor mates had convinced me (through great deliberation) that the only way you like beer is if you have been drunk on beer. This led to the magical appearance of a keg and me somehow in the suite at the end of the floor choking down beer. By about 2 in the morning the experiment was completed, and by 5 in the morning I was wandering around the floor in a brown terry cloth robe begging for someone to help me throw up (thank God this was pre-YouTube). My brain was simultaneously remarking on how stupid this was, and seeking warmer climes somewhere near the spinning ceiling. Being a visual arts student all my classes started at 8 in the morning, of which I made exactly none of them.
So, now when someone asks how was I feeling after coming home from the hospital I have an exact answer: hungover – right down to the brown terry cloth robe.
That sensation lasted for about two days, and then I was able to recover pretty well. I taught my class and kept busy. I was once again receiving the Neulasta shots, so I was preparing for the deep bone pain. Except, instead of my legs hurting it was my jaw. It really hurt. I went to see Dr. G and she thought it could just be the Neulasta.
The next day I pushed on a molar, the pain spiked, and I was off to the dentist. He took one look at the X-Ray and said “It has to come out, I’m sending you to an oral surgeon.” Dear God, Job just called and asked if “you could just give the kids a break.” The oral surgeon gave me a shot of happy juice, popped out the tooth, and life was much better.
A week later my hair began to fall out again. I had grown my beard back since my first chemo 5 months earlier. When I lost my hair previously it was slow. This time, the hair wanted off me, and wanted off now. I was in the shower one Sunday morning after Anna Maria had gone to church. In the shower I began pulling at the hairs on my chest and arms. It was coming out in clumps. The more I pulled, the more that came off, the more depressed I got. Chemo again, cancer again. I dried off and drove to join my wife at Church. I just needed to be near her. I finally lost my beard over Christmas. Then it was time for the next round of ICE.
ICE part 2: This time it’s personal
The second round of ICE had a bit of a rough start in much the same way as if Lewis and Clark started their exploration of the Louisiana Territories by forgetting their boat. It seems in an attempt to keep folks out of the hospital on Christmas, every doctor admits their patients on the 26th. This makes things a bit of a logistical nightmare for admission.
In my case, the trials began by admitting me to a bed on a non-chemo ward. This would be fantastic and efficient if they could, in fact, actually administer chemo on said non-chemo ward. They can’t. Nurses, for example, have to be qualified in chemo care (which as we’ve seen involves some knowledge of mustard gas and Native American remedies for warts). This became evident when they went to hook up my IV, which requires accessing my port, which they can’t do. The “good news” is that one of the nurses had a friend who could do it. This was at 1:30 in the afternoon.
By about 3 the hospital had begun a great patient shifting to move folks out of the chemo wards who didn’t need chemo and find me a room. I had visions of musical chairs where the losers were put into proctology and burn units. I was also informed I needed to get blood tests, because there was a chance I was too sick to poison today. Which was a problem because the nurse’s “friend” had not stopped by.
By 5 a familiar and friendly nurse from oncology had shown up and accessed my port and drawn my blood. Also, my dinner had arrived so I could luxuriate in roasted potatoes, green beans and a small bowl of egg salad.
By 7 I was examined by a new doctor. This was either very reassuring or completely violating, as this is the first time I have seen this doctor and she definitely checked out all my lymph nodes thoroughly. I’ll skip the anatomy lesson, but let me leave it at: there are lymph nodes below the diaphragm…far below. I also learned I was going to get a room in the transplant center.
At 8 I snuck up to the Tim Horton’s on the 11th floor of the hospital and got a bagel. I also staged a daring raid on the oncology ward where I secured a box of frosted flakes and orange Jell-O. It was less about hunger than a sense of control and revenge. I have a very low competency in revenge.
At 9 p.m. (yup, you read that right) visiting hours ended. This is not relevant to the story as my wife had to go home hours ago in order to parent.
At 9:15 my new room was ready and I walked over to it…all 20 feet.
The nurses in the transplant ward were fantastic. While the wait to start was annoying, the start itself went well.
H, my nurse when I first got there, was funny and great and moved quickly. She was also great in talking about what to expect with the actual transplant and how to ease the experience (eat, walk, drink, wash, brush, and butt care). Apparently the best way to approach replacing your entire blood stream involves remembering what it was like to be a kindergartener.
They are definitely more precise in the transplant ward. The nurses put on gowns to set up the chemo and they wear masks when working on my IV lines. All instruments like stethoscopes and such are specific to the room so as not to spread germs. The room itself is HEPA filtered and positively pressurized for good measure. While doing ICE I was allowed to leave the ward to walk around, but once the transplant process started, I’d be confined to a small hallway 42 paces long.
ICE Part 3: You Get the Point
On January 15, two days after my 44th birthday, I was back in the hospital for my 3rd round of ICE. Everything was becoming pretty routine, with one twist. While I was in the hospital they wanted to get me ready for the stem cell harvest. It turns out the lovely port I had installed wasn’t quite big enough for apheresis (technical name for the harvest process), so I needed to be upgraded. I had two choices. The first was a “TriFusion Catheter.” This would be implanted in my chest (across from my port) and run much like a PICC line. The second option was a catheter in my groin (think top of the leg, not dangling bits) that would be inserted on the first day of the harvest and removed the last day…to which I said, “What was that first option again?”
Here is the prayer I said every day in my journey with cancer:
“Lord take this burden from me; but if it is mine to bear give me the courage and strength to see it through.”
While getting my new TriFusion catheter, I realized just how that prayer was answered. As the prep team got me ready all they (and I) did was crack jokes. The operating room was filled with laughter.
“So I ask everyone from SU who their main rival is, and I always get the same answer…in football this one, and in basketball that one. I went to school at Texas and we only had one, Texas A&M. I think SU should pick its natural rival.”
“Who is that?” I asked.
“FSU…it’s right there in their name for God sake.”
I walked right into that one.
On the isolation ward the nurses and I cracked jokes, and decorated Bambi – my IV pump pole. Anna Maria added beads and small disco balls to Bambi. During a late night walking session Nurse H and I got to talking about the best arrangement for Bambi’s decorations. H said, “It’s obvious right, beads up, balls down!” This became a rallying cry for H and me throughout the rest of the process.
“How’s it going David?”
“Beads up balls down H!”
All around me were examples of how courage and strength show up, and it wasn’t always with a punch line.
In the room next door to me was a woman who had just suffered a heart attack. Her daughter stopped by my door and we got to talking. The mother was being transferred to hospice and her friends were gathering, because it was a matter of days. The daughter didn’t say this with sadness. Her mother was 90 and had lived a good life. Her mother was vibrant to the end. She would spend her last days surrounded by friends. In her daughter’s voice I didn’t hear despair or anger, but gratitude. “She’s ready and she’s had a good life.”
People commented on how I managed to see humor in things even with cancer. I also hope I saw joy. I was using cancer. Using it to become closer to my wife and children. Using cancer to recharge, read, and think beyond the next trip and the next keynote I had to give. And I used cancer to laugh. Courage is not the absence of fear, but the ability to do something in spite of fear. And strength? That is not simply being stoic, or bearing pain. It is the ability to laugh, and joke, and to find the joy in the pain and people around you.
Humor would serve me very well after I had the catheter installed and gone home. It was going to be essential in handling the results of my next PET scan.