“I’ve been reading memoirs written by people who’ve experienced really horrible things in their lives,” I told my Sunday morning running group over coffee a month ago. “Shawn and I are going back to CHOP on June 20th for his first round of chemotherapy,” I told them. “The doctors tell me that this protocol is among the most intensive chemo there is. It’s going to really suck. I need a really gut-wrenching memoir to read while we’re there. The more heartbreaking, the better.”
Most of my running friends are smarter and more well read than I am. It’s part of the reason I like being with them as much as I do. The Sunday group is particularly astute, if not a bit sesquipedalian.
Two weeks later Jim, also a Russian history professor in addition to being one of my running partners, handed me a paper copy of Journey Into The Whirlwind by Eugenia Semyonovna Ginzburg. “This should meet your criteria,” he told me. It’s a firsthand account of a woman who spent eighteen years in prison and hard labor camps during Stalin-era Russia. “Bad things happen to her,” Jim told me, “and then it gets worse. Let me know if you have any questions about the history surrounding the events in this book.” My eyes probably actually widened. This sounds perfect!
I tucked Jim’s book into the side pocket of my CHOP bag and headed into chemo, whatever that would actually turn out to be. I spent the days leading up to this admission with increasing anxiety and outright fear about what we’d deal with when we got there and then headed into our Whirlwind.
We were admitted on a Monday. The first three days were active infusion of “the most intense chemotherapy there is, short of our bone marrow transplant kids.” Those kids are locked away in a solitary wing that is difficult to get to. I’ve never been there or seen them. Shawn threw up several times on Monday in a mechanical way. He wasn’t nauseous, he simply threw up when he needed to and felt ok in between episodes. I held the puke buckets under him and rotated them as I’ve done hundreds of times before. He had some urgent diarrhea, too, as predicted, and some urinary incontinence. I did a lot of laundry in the first two days. Then it was over. That was it. And Shawn never complained.
I didn’t take out the book until Wednesday. I was at about page 15 when the hospital chaplain stopped by. This is one of those positions at CHOP that make the rounds every so often to see if they might be needed or wanted. I wasn’t in a mood to chat with anyone, having finally opened my book while Shawn was happily watching a movie. But I was polite. She told me that someone had told her that we were new and might need some help from her. New? Hahahaha. This is our 16th admission. Our first for chemo and second on the oncology floor but we are far from new to CHOP. “Well, I don’t know who told you that we are new and might need your help, but we’re not new and we’re atheists, with a small ‘a’, it’s just not a thing for us. Thanks for stopping by, I appreciate your time.” I hoped she’d just leave. I get that chaplains, particularly hospital chaplains, have things to offer even to non-religious families, but it’s just not where I’m at right now. Thanks for stopping by, I appreciate your time.
She didn’t leave. Damn. Ok, time for some small talk. I can do that. I’m not in the mood, but I can do it.
“What are you reading?” She asked.
I held up the book and read the title out loud.
“What is it about?”
“A woman who spent time in a Russian prison in the Stalin era.”
“Are you a professor?”
“No, why do you ask?”
“I don’t see many people around here reading hard copy books, especially about topics like that.”
She eventually left. I really did appreciate her time.
I kept reading when I could. It took me the entire 15 day stay plus a few days at home to finish the 418 page book. That felt very long for a relatively easy admission but it was because it was so smooth that it took so long to read. Shawn was awake and happy for most of the time. He wanted to play. My time was spent mostly interacting with him and when I took some time for myself it was outside, running or walking, while Shawn watched TV or played games on his iPad, Face Timing me if he needed anything, which most of the time he did not. That’s a good thing, given how many admissions prior to the diagnosis I spent rotating the puke bowls and watching him finally collapse into sleep after screaming in pain for so long. I rarely left the room during those stays but I had plenty of time to read.
So what did I get out of Journey Into the Whirlwind?
I wanted to read this book for it’s horrific memoir topic. That’s been my thing lately, after all. This woman endured a lot. It’s both good to know about such things in the world and it’s good to understand that just because there are worse things happening to other people doesn’t make whatever troubles you are going through any easier. It’s also a good reminder that none of us have a corner market on suffering in this world.
As always happened at the beginning of such a ride one or two of us began to make literary comparisons: in this case Alaska and Jack London’s White Fang.
As I read, I noted quotes that felt relevant to our experiences here. This is not a book review, nor is it an academic discussion. These were my thoughts, broken out in quotes, as I read this book while living on the oncology floor of a pediatric hospital, having spent seven months living on other floors of the same hospital while desperately seeking answers.
Perhaps because waiting for an inevitable disaster is worse than the disaster itself, or because physical pain dulls mental anguish. Or perhaps simply because human beings can get used to anything, even to the most appalling evils, so that the successive wounds inflicted on me by the dreadful system of baiting, inquisition, and torture hurt me less than those I suffered when I first came up against it.
We can get used to anything, can’t we? When we first came to this hospital I didn’t leave my room for two days because I was too terrified to try to find my way around while worrying about what Shawn would be doing while I was gone. Most parents on this floor who are here for the first or even second time, are petrified. In addition to having most likely recently been told the horrific words “your child has cancer” they have also been uprooted from their homes, whether 10 miles away or 500 miles away. It’s the most awful feeling at the start. But what about us? Our primary doctor assured me that I am not the first parent to feel tangible relief from hearing a cancer diagnosis, because it’s a diagnosis, and a diagnosis carries with it a treatment plan, which is better than continuing to try to tread water in the abyss. But these others – they are petrified. Last week they were likely sitting in their pediatrician’s office saying “something’s wrong.” And now they’re here. They don’t even know how to get food, let alone want to eat it. The first weeks are tough. But we did that almost a year ago.
They were worse off than I was: I had the advantage of six months experience behind me.
May I never experience all that it is possible to get used to.
For better or worse, yup.
At the once, without allowing myself to dwell on the horrors of our situation, I set about establishing contacts.
That’s the key, isn’t it? Establish contacts. Make connections. Other people. Ginzburg describes the process of deciphering the prison alphabet system of tapping on walls in order to communicate with others. I struggled to make contacts in the first few days of this admission. I wanted to meet other parents. I wanted to talk to their kids, and so did Shawn. But how? Half the kids are restricted to their rooms, with requirements to leave the door closed and have all people entering to wear masks. How can I meet them? The answer became laundry. Yup, laundry. Unlike most floors at CHOP, 3 South has a washer and dryer on the floor (the PICU had one, too, but the system was haphazard at best). This is huge! No schlepping dirty clothes to the Connelly Family Resource Center on 8 Northwest! Our own laundry! During weekdays there’s even a person who coordinates it, does it for you (more on that later) and texts you when your stuff is done. On weekends, though, the parents communicate among ourselves. We write our name and number on a white board and when it’s your turn, the person before you texts you to let you know. Then you text the next person when you’re done. So now I had the names and numbers of Mike and Nia. Whoever they were. I spent that day looking at people, wondering who was Mike and who was Nia. But I knew their names and I had texted with them. I had established contact.
For a moment I felt as if all this were part of a film.
There were many times during the Undiagnosed Period and the Diagnosis that I felt as if I was watching myself experience things. I suppose that’s called disassociation and from what I’ve read, it’s not uncommon for people in such situations.
Although the authorities were careful to shift the warders about from one Corridor to another so that we should not get used to them or establish human relationships, the same ones came back to us from time to time and we learned to distinguish between them.
Ah yes. The nurses change, at most, every 12 hours, sometimes more often. Sometimes you talk to the nurse at 7PM and he/she tells you that they’ll be with you until 7AM but you wake up at midnight to find an unknown person in your room, drawing blood from your child. It’s different from prison in that the GOAL here is familiarity and continuity of care. But sometimes it doesn’t work out that way. It’s their jobs. It’s our lives.
With the curiosity of “ex-solitaires” we talked incessantly to the camp women, many of whom had been here for more than a month. One after another we learned their life stories-all of them fantastically improbable and yet true; all tragic, yet consisting of episodes which were comic in their incongruity.
You mustn’t grieve so much for your friend. People die here so often, you can’t afford to. Think of something else, your family for instance. Have you got anyone outside?
One had to bear constantly in mind that however bad things were today, tomorrow they were apt to be worse. Each night, as one went to sleep, one could thank Fortune that one was still alive. “No luck today my lady death.”
People die here. Actually, as we headed to Floor 3, Oncology, I consoled myself with the knowledge that, unlike the PICU, it’s unlikely that anyone will actively die near us. We most likely won’t have to be caught off guard hearing death in the next room over again. We won’t have to explain it to Shawn, again, on Floor 3. At least that part of our experience is likely to be over for the time being. And if I weren’t living all of this, I’d hardly believe it.
One day Derhovskaya ran out of cigarettes. Used to chain-smoking, she was in torment. Just then I got a parcel from my mother in which she had put the usual two packs. “Saved!” I said carefully, holding them out. Derhovskaya blushed and with a muttered “Thank you” turned away:
“Just a second. I won’t be long.”
She sat down by the wall and tapped a message. One of the prisoners in the next cell was Mukhina, the secretary of the Soviet Revolutionaries’ clandestine regional committee. Derkovsaya tapped away, not realizing that I could follow:
“There’s a woman Communist here who has offered me cigarettes. Should I accept?”
Mukhina inquired whether the Communist belonged to the opposition. Derkovskaya asked me, passed on my reply–and Mukhina tapped categorically: “No.”
The cigarettes lay on the table between us. During the night I heard Derkovskaya sighing deeply. Though thin as a rail, she would much sooner have done without bread. As I lay awake on my plank bed, the most unorthodox thoughts passed through my mind — about how thin the line is between high principles and blinkered intolerance, and also how relative are all human systems and ideologies and how absolute the tortures which human beings inflict on one another.
During the time when Shawn was undiagnosed, we went through hell. We’re still going through hell, but now we have a lot more support. Sometimes I call cancer the Golden Ticket Diagnosis, which sounds crazy to most people and especially to people who’ve kids have also received a cancer diagnosis. What I mean by this is that for months, we didn’t know which direction this was going. There were three possibilities for the root of the problem – Infectious, Immunological, or Malignant. Malignant was the furthest down the list for most of that time. Which one we would land on would determine a lot about what happened next.
When we moved into oncology, I was instantly struck by the inequality of resources compared with other departments we had spent time in. There was SO MUCH STUFF. There was lunch and dinner put out several times a week. There were continually replenished snacks for parents. There were not only laundry facilities on the floor, but there were people there who will do your laundry. Shawn likes animals. Pillowcases with animals on them appeared on his pillows. Stuffed animals, the big ones, were delivered to our room. One day I was sitting on my bed in our room and someone came in and handed me a $50 Amazon gift card with “Shawn – 14” written on the envelope. Our room number – 14. They were handing them out to each family on the floor. Our social worker told us that we would not have to worry about our rent or bills during the duration of his treatment.
I’m grateful for all of the support that our family, friends, coworkers, classmates, and community has given us. I’m also grateful for the support that CHOP and various foundations have given us. That goes without saying, although I’ll say it anyway. And from reading about other people’s experiences, we are more fortunate than most families facing the reality of having a child with a life threatening illness, including cancer, which is indeed an exclusive club to which no one wants membership.
Hemophagocytic Lymphohistiocytosis (HLH) is a rare and life threatening immunological disorder that carries a poor prognosis (that means that kids die) and is treated in part with steroids and chemotherapy. For a while during our undiagnosed period, it was toward the top of the list of things that the doctors were considering for Shawn. It’s a terrifying condition that also stuns families and sends them into a tailspin. And you’ve probably never heard of it until now. One of the horrors that I contemplate is that if we’d landed on HLH instead of cancer when the Wheel of Possible Diseases was still spinning, our lives would probably be very different right now. The same exclusive club, but without the special membership card. During our last admission, I met a mother who’s child was on the oncology floor for treatment for HLH. She wasn’t in any less need of support than the parents of kids with cancer. I once asked one of Shawn’s doctors, who has worked in other departments, “If we had landed on HLH rather than cancer, would all this STUFF be happening?” “Probably not” was the answer.
We need the help, that’s for sure. But so do a lot of people. How do I reconcile my needs with the unfairness of the situation? Friends have told me, “take advantage of everything that’s being offered to you.” They are, of course, correct. How can I not? What good would come of not doing so? “It’s all from our donors,” CHOP staff have told me, “most this is given by people with a connection to childhood cancer.” That makes sense, too. Of course people will want to give back and they will do so with conditions that they have a personal connection with or one that pulls at their heartstrings. When I’m in a position to give back, it will be to help families in all forms of previously inconceivable situations, not just those dealing with childhood cancer. I’ve seen them. I’ve watched their kids die. I’ve heard their financial struggles. I’ve watched them have to leave their kids there during the day and go to work because they have no choice. And no one is doing their laundry.
During our first round of chemo, I contemplated several things I could do to combat what I saw as an embarrassment of riches when I compared our experiences in oncology with our experiences elsewhere in the same hospital. I could take some of the leftover food from the many lunches, dinners, and snacks and give it to the homeless people I see daily on my runs from the hospital. I could take my gift card and hand it to a parent in another department that I meet on the elevator. I could borrow some of the multiple copies of popular movies that are available in oncology but that we’ve never been able to find elsewhere and “accidentally” leave them in the playrooms on other floors. My own personal Robin Hood campaign.
In the end, I did none of those things, at least not that time. I grumbled to myself and to anyone else who would listen. Grumbling doesn’t really do any good but perhaps someone listened. Someone told me that a doctor had recently become aware of all this inequity and was similarly shocked and was told “you should talk to Shawn’s mom.” That made me feel better. For a moment. People know. They’re listening to me.
The only thing that I did was refuse to take part. I did my own laundry, even if that meant waiting until the weekend or going to another building. I didn’t eat any of the meals or snacks. In the end, that probably saved me from gaining more weight since none of the meals were particularly healthy, although there was some amazing looking fresh-cut fruit one day. I didn’t eat it.
No one is going to decide to give lunch to kids with other illnesses because I refuse to eat what’s being offered to me. I can probably effect change in a more productive way by becoming involved at a higher level. Maybe when we’re done with whatever it is that we’re doing here, I will. I hope I do. When I donate, my money will be earmarked “for the greatest need.” That won’t be oncology. In the meantime, like Derhovskaya and the cigarettes, sometimes you just have to dig your heels in and stick with your beliefs, even at your own expense, for the sake of feeling like you have some level of control over what’s happening to you.
Your child might get cancer. It’s a terrible version of hell. But your child might also have a Thousand Other Horrifying Things happen to them. There’s no corner market on suffering in the world.
We started with fish. An aquarium for Bill’s birthday in November. The kids and I wanted to give it to him, fully stocked, as a gift but we soon realized that we didn’t know nearly enough about aquariums to make it a surprise. Bill did, though, so we told him the plan and we all went together to get the supplies and the fish. Picking out your own birthday gift isn’t such a bad thing when it means that you are encouraged to get exactly what you want, even if it isn’t necessarily the most practical decision. He chose two Angel Fish and a Plecostomus, to keep the tank balanced. The kids named them Zebrah (pronounced like Deborah), Goldie, and Cheetah. Everything was great for a couple of days. Then they began to slow down, float more than swim, and soon enough Zebrah and Goldie were dead, too. We went to an aquarium hobbyist store, figuring that our mistake might have been getting the fish from a mass market pet store. We talked to an expert there. Our aquarium was good, he said, we were doing all the right things. We brought home Grape and Warrior. They looked even better than the previous fish, graceful and strong. They, too, were dead within two weeks.
At my father’s local memorial service a montage of the music that had been in rotation on his car stereo when he died played quietly in the background, including the Peter, Paul, and Mary version of Bob Dylan’s Blowin’ In The Wind. Shawn picked up on the line “how many deaths will it take till he knows that too many people have died?” and told me that he is going to be one of the last people in the world to have cancer. Later he told me that he wonders what new diseases there will be when he’s twenty years old. Shawn thinks about some pretty big things for an eight year old kid.
She finally seemed happy here as the only animal. Our last cat got out and never came back on the day that we moved into this house. Shawn and I weren’t even here. We were inpatient at CHOP. We suspect that he became disoriented and couldn’t find his way back to our new house. The cat before him died from cancer when he was 6 years old. At the time, we were in the middle of getting our house in Philadelphia ready to sell. We didn’t even notice that he was sick until he curled up next to me one night and he was skin and bones. He was dead two weeks later.
fast friends, first meeting in a “sibology” group, and later having wheelchair races in the hallway. That kid came to our doorway several times on their last day to ask if Lilly was here yet. Finally I found out what time Lilly would be here. I went to their room to tell them. It was being cleaned. The bed was already crisply made for the next kid. All the kid artwork was off the walls. They were gone.
cookies, cupcakes, muffins, and Rice Krispies treats. I helped them take the finished products out of the oven, and Gabrielle’s mother did the same, but they did the rest. They set prices for each item. They made ingredient cards to be mindful of those with allergies. They made signs and decorated a cash box. The theme would be “Desert Island.” (Get it?) They chose Caribbean music to play. They cleaned our outdoor furniture for its first use of the year after accumulating winter grunge on the back patio and moved it to the front yard.
For the first time at CHOP, Shawn was engaged, responsive and happy. He looked forward to each day’s hour with her. She told us how wonderful it was to work with our school district, how responsive they were. When we went back to CHOP inpatient in January, I was disappointed to find out that Maria would be our new teacher, not Ryan, since Shawn liked Ryan so much and he responds best to people he already knows. But he instantly loved Maria, too. He loved all his teachers and I began looking forward to it as the time that Shawn would be happy. When Shawn refused to cooperate with the doctors, I told them that if they want to watch Shawn’s speech, movements, and behavior, come watch him when he’s with his teacher. They’ll see everything they are looking for.
Blue Wristband Parent 