By Jake Teitelbaum. Tuesday, 3/23/17
Supporting a loved one during cancer: a patient’s perspective
Imagine getting a call from your brother and hearing a quivering voice on the other end struggling through tears to tell you his cancer is continuing to grow despite the chemotherapy. Imagine hearing him, once optimistic about his treatment, now confronting depressing life-expectancy statistics.
Fifteen months ago, I put my sister, Sarah, in this predicament when I called to tell her that I was in the unlucky 10 percent of Hodgkin’s patients who have a particularly resilient variation of the disease. Unfortunately, given the prevalence of cancer in our world, too many of us will face a similar situation at some point in our lives. The question that my sister and too many others face is, how do you help?
Grateful to have had an army of support over the roller-coaster ride of the last 19 months, I can testify to the types of support that have been most effective from a patient’s perspective. Perhaps it was my sister’s background as a psychologist or her experience in confronting her own adversity, but her efficacy in helping me through my journey is something I believe can serve as a blueprint for others seeking to support their loved ones.
Identify the facts of the diagnosis and understand the prognosis. Consider the personality of your loved one: How are they processing their illness and the road the lies ahead?
Up until this crushing PET scan, I was optimistic because my prognosis was great: 90 percent of patients are cured from Hodgkin’s lymphoma after eight rounds of the ABVD regimen. Recognizing my positive outlook, my sister was right alongside me, encouraging my determination to return to school and retain some normalcy of being a student. When things went south, however, the fact of the matter was that my chances of survival had decreased tremendously. The next year of my life was going to be hard, and there was no way around it. This brings me to my next tip.
Acknowledge the reality of the situation. Don’t try to make someone see something in a positive light unless they’re ready for it.
When I called Sarah in tears about my PET scan results, she listened and cried. I was broken and I needed a shoulder to cry on. Although I would eventually learn to cope with my illness and shape my experience in a constructive way, this took months. We all manage adversity differently, and allowing your loved one to process their feelings on their own timeline is critical. So how can you help?
Show them you care about them — and probably not through Facebook messenger.
I can’t tell you how good it felt to receive a handwritten card, a pair of socks from a nurse or a collection of absurd videos from family and friends. As patients, we don’t expect anyone to wave a magic wand and make everything better, but we want to know others are thinking about us.
Help them bring their own personality to treatment.
For me and many other patients, the worst part about treatment is surrendering our individualism. Stepping into my hospital gown and non-slip socks for my fifth in-patient hospital stay in three months, I felt my neck tense as a shiver passed down my spine into my cold feet. For me, those beige lifeless socks embodied the essence of my hospital experience: They represented the chemotherapy that would tear my body apart and perhaps worst of all, they represented foregoing everything that mattered to me in life to be cooped up in a sterile hospital environment. Give the patient in your life something to remind them of who they are and who they can be despite what stands in their way.
By Jake Teitelbaum. Sunday, 10/2/16
Tomorrow is a Big Day
Tomorrow I’ll have my first PET scan since December of 2015, when, for the first time since starting treatment, my scan revealed a substantial decrease in mass and activity of the lymphoma clusters. It was awesome news and my family wanted to celebrate. I didn’t.
At this stage, I was two months into an aggressive chemotherapy, known as ICE, because my disease had continued to grow despite the initial eight cycles of ABVD therapy. My doctors had warned me that the rate of recurrence among Refractory Hodgkin’s Lymphoma patients was around 30-50%. Not only were those odds less than appealing, but I was also preparing to be admitted as an inpatient for an autologous stem cell transplant in what would turn out to be a 25 day stay. In my mind celebration would have to wait. Until when, though?
Recurrence in Refractory Hodgkin’s patients most often takes place within the first year, and the likelihood of recurrence drops off day after day until it plateaus at year 5, by which point about 99% of patients will have either relapsed or will go on to live cancer free. Tomorrow will mark roughly nine and a half months since going into remission, and since then, I’ve had a stem cell transplant, proton radiation, and am currently on a low dose maintenance chemotherapy. Although it seems strange to treat someone in remission, my oncologist explained it to me as follows, “Your disease is smart and knows how to adapt to treatments so if it ever comes back, it will pose a great threat to your life. With that in mind, we’re going to use everything in our toolkit to kill it while we have it on the ropes.” Tomorrow I find out if my disease is dead or alive. It’s a big day.
Since finishing radiation in May, I’ve in large part avoided thinking too much about this scan because I was too busy basking in the vitality of life spent outside the hospital. Of course, on occasion, it would resurface both in my waking and non-waking hours (yes there was the occasional nightmare of returning to the bone marrow transplant floor for a second time). As passionate as I am about embracing the personal growth resulting from this perspective upending experience and encouraging others to do the same, I’ve also been obsessed with savoring the simple pleasure of living inside a healthy body. Since losing 23 lbs in 25 days and struggling to will myself out of bed after being discharged from my stem cell transplant in February, I’ve gradually increased my endurance to the point of finishing my first Olympic triathlon this two weekends ago. It was my version of a couch to 5k; Chemo to Triathlon, and it was amazingly fulfilling. The other day I went out for a run on a cloudy evening and minutes into my run, the sky opened up and began down pouring big fat rain drops, the kind that make a loud smack on your windshield. For the next hour and forty minutes, I ran. I ran around downtown, I ran to Wake Forest and I ran back downtown. I ran because I could. Meanwhile, front and center on my mind, was this scan and the unavoidable “what if” rabbit hole that inevitably played out each time my mind wandered to Monday morning. I feel great and I’ve had a lot of treatment since going into remission so by all logical accounts, I should be okay, but what if that cancer has resurfaced? Here I am, feeling as alive as ever, the sound of thunder cracking around me and the sensation of rain drops whopping me in the face, and yet, playing over and over again inside my head is the dreaded thought of what if. What if the scans show activity again? What if I have to move back down to Florida? What if my nightmare of returning to that bone marrow transplant unit becomes reality?
Well shit, at least I’ll have better socks this time..
When I was discharged in February, I told my Dad that I really hoped the cancer never returned for a number of reasons, but most of all, I wasn’t sure I could do another stem cell transplant. The transplant itself is harmless, it’s the chemo leading up to it. As my bone marrow transplant doctor described it, the objective is to get you as close to death as possible, and then reintroduce your stem cells so they can go about rebuilding your body. It was hard. The kind of hard that makes you question whether it’s worth it, whether your life is worth living.
Months after the transplant when I was receiving my radiation, I was privileged to meet Todd Blake, the founder of the Live for Today foundation. Todd is also a Refractory Hodgkin’s patient that had an autologous stem cell transplant, but is in the unlucky 30-50% of patients that has since had another recurrence. As a result, he’s undergone an allogenic stem cell transplant and multiple subsequent treatments to keep his disease at bay. People talk about fighting the battle that is cancer, Todd has fought a war. Frankly, though, it’s a war I don’t ever want to see.
Tomorrow is a big day.
Update: PET Scan was clear, I'm cancer free!