For more information on dealing with HPV+ throat cancer, see my blog Caregiving for Throat Cancer.Ten weeks after John's last radiation treatment for HPV+ tonsil cancer it seemed as if his recovery had stalled for good. Still unable to eat even soft foods without pain, he was getting cranky when not utterly withdrawn and I was getting exhausted. Most of the time it seemed he wasn't really "there," and who could blame him? I'd be checked out of my body, too, if I was in that much pain for so long. But I was lonely. I missed him, and was beginning to wonder if he'd truly ever be himself again. His doctors all thought things were coming along just fine, but they'd never actually been through everything he had, had never been in unrelenting pain, week after week.
Worse yet, I'd gotten two phone calls that week from men in their 50's, newly diagnosed with the same cancer, looking for advice. Overhearing one of these conversations, John said in frustration, "You don't know what it's like to go through this. None of the doctors can tell you what it's really like. No one knows how this feels!" I had to agree with him. No matter how much empathy I was capable of, I truly didn't know what it was like to, among other things, be bolted down into a hard, form-fitting mask six times a week for up to 50 minutes at a time. In my meditation that night I again asked for help for John.
As a cancer caregiver I've been repeatly reminded that all you have to do is ask. Not only does help arrive, but the right kind of help arrives, sometimes delivering a better and more precise solution than what you'd asked for. This was one of those times. The next day I got a call from a Cancer Center volunteer (I'd never gotten a call from them before), wanting to know how we were doing. I described John's frustration with having no one to talk to who actually knew what he was experiencing. John entered treatment a strong, healthy guy who worked out 5 times a week, and instead of getting better once this was all over he was still weak and tired and in pain and discouraged.
The volunteer had me look up Imerman Angels on my laptop, explaining that they match cancer patients and caregivers with people who've survived the exact cancer you are dealing with. She strongly suggested that I could also get help from fellow caregivers who'd been down the same road, and so I filled out the online form on the spot. I also sent the link to John, doubting he would follow through and understanding I couldn't push him to do so....but he did.
Follow me below the orange gnocchi to learn about one of the most wonderful support organizations on the planet for both cancer patients and their caregivers: Imerman Angels.
The Imerman Angels organization found us a match more quickly than I could have dreamed.
Two days later when John was at physical therapy the phone rang, and Hector introduced himself in a rich warm hispanic accent as an Imerman Angel who had been matched with John. He asked me a few questions about where John was in his treatment timeline and then told me that it had been a year since his own treatments for HPV+ throat cancer had ended. Like John, he'd come into his diagnosis strong, fit and healthy, and like John he'd had surgery, chemo, and the strongest and lengthiest radiation treatments they give for any cancer. Like John he'd had a feeding tube, and like John he'd been beaten up more than the average person by the chemo.
"I was training for the Iron Man when I was diagnosed," he told me. "I lost 60 pounds of pure muscle. I couldn't eat or talk for a month. I ended up on dialysis for awhile from the chemo. I want you to know this....I am working out at the gym again. I rode my bike around Lake Michigan this morning. I am training for a marathon again. I have my health back. I know exactly how John feels right now, that this will never end, that he will never have his life back. But I will tell you this, John will start feeling like himself again, and very soon."
Hearing this from someone who had actually been through the same ordeal was the most reassuring thing imaginable. Hearing from somene who had been athletic before, and had come back from the weight loss and fatigue and treatment toxicity to resume an athletic lifestyle was the very thing John most needed to hear. It spoke directly to John's greatest fear.
Hector went on to tell me that his wife "was the hero of my story," and asked if I would like to talk with her some time. I had to go to work and scribbled down his Chicago phone number. I wasn't sure if, in his current state of withdrawal and apathy, John would call him back.
"Will you do me a favor, Hector? If John doesn't call you back, will you please call him again this weekend?"
And in the kindest, warmest gentlest voice imaginable, in that velvety rich accent, Hector said the words that marked the beginning of our next phase of healing:
I hung up the phone, sat down, and bawled like a baby.
I promise you. I will not let you go.
When I came home that night John had talked with Hector for over an hour and was buoyed by the conversation. The next day I called his wife Susie. We laughed at the conflicting feelings of loving someone with all your heart and working your hardest to save their life while simultaneously wanting to kill them. "When you're done with treatment you think, ok, now I'll start to get better," Susie said. "But the first ten weeks after the end of Hector's treatment were hell. They don't tell you how long it is before you really start feeling better on a day to day basis!" Both Hector and Susie reassured us that not only was John still going through the hardest part of the entire journey, but that he was very close to the end of that terrible phase.
Susie described Hector during that ten weeks after treatment as "not being in his body." Friends would visit and say that despite the drastic weight loss Hector looked great, and Susie would stare at them, wondering why they couldn't see "that wasn't Hector!" I explained to her how I felt that John couldn't even really see me, or consider what was happening to me throughout all this, and she bluntly said, "You're right. He can't right now. But he will." She continued, "I promise you, John will be back in his body again. You'll know it when you look back and talk about this in the past tense. You'll know it when you can talk about it with wonder and amazement as something you survived together." This was exactly what I most needed to hear, and she was right. A couple of days later it was as if John started coming 'back online' again, at first briefly, and then for hours at a time.
Two weeks later on July 14th, a date neither of us will ever forget, as we were sitting out on the deck, John started talking about everything that had happened...in the past tense. He turned and looked at me in wonderment, as if really seeing me for the first time. "How does someone get through something like this without someone like you by their side?" he asked. I looked at his clear, open face, into his concerned and caring eyes, and with tears running down my cheeks said, "Welcome back."
And now? John's recent follow-up PET scan was all clear (NED, baby!), he's started back to work part-time, he's rehabbing the nerve damage to his shoulder from the chemo and he's slowly working out at the gym again. He's mostly eating solid food now, though it's not yet a pleasant experience. His wicked keen sense of humor is back in full force, and he is enjoying life very, very much. Best of all, just as Hector promised, he's starting to feel better every single day. We know that this is just the beginning, and that it will be a full year before John is completely over some of the side effects, but we now both have hope that he will continue to recover.
From the Imerman Angels website:
Imerman Angels was created on the belief that no one should have to fight cancer alone and without the necessary support. At 26 years old, Jonny Imerman was diagnosed with testicular cancer and began his fight against the disease. Throughout his experience, Jonny was lucky enough to have loving support from his family and friends but had never met anyone his age who was a cancer survivor. He wanted to talk to someone just like him, someone who truly understood, and was intimately familiar with his experience. In short, he was looking for someone who had already beaten the same type of cancer. This was the beginning of Jonny’s vision and in 2003, it became a reality when he founded Imerman Angels.
Please help me spread the word about this amazing organization. Whether you're a confused caregiver, a patient wishing you could talk to someone on the other side of what you're going through, or someone who has survived and wants to mentor someone who is currently struggling with your same diagnosis, the Imerman Angels are truly wonderful.
Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 7-8 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.