It was right after Christmas, 1988.
We were in 6th grade. Instead of listening to the latest mix tape we might have made from the radio, my friend got a cancer diagnosis. "I was diagnosed with Stage IVb Hodgkin's Lymphoma on January 15th " says Rachel Corbin, a Connecticut native. "It's crazy how all us survivors remember the exact date, I guess because life changes forever as of that day... it was three months before my 12th birthday."
September is Childhood Cancer Awareness month.
I have vague memories of visiting my friend in the hospital, attending a support group and just hanging out. Rachel and I grew up together, but lost touch sometime after high school. Our families spent time together, we had siblings who played together, we are from a small town on the shoreline where you think bad things can't happen. But, Rachel is still fighting, now, more than 20 years later. Social media helped us reconnect and I've been following her progress now for months, wondering why we ever lost touch, and feeling helpless that I can't take her pain away.
She recalls every detail like it was yesterday. "I had both chemotherapy and radiation... There's been some changes in how they administer these drugs, I got them all at the same time. I would vomit about every five minutes and we would wait until the vomiting reduced to about every half hour so we could try to make the car ride home. This took hours... I would sleep on the bathroom floor because it was cool and I was so weak, I struggled to get back in bed." Rachel tells me she was then put on a different kind of chemo that didn't make her vomit as much, but left her with nerve pain. "About five months in, my tumor began to grow... Doctor's told my mom this may be it. They called oncologists all over the country." Following another round of treatment, her tumor started shrinking. Then she had more radiation, which she says severely burned her skin, followed by more chemo. It had been almost a year since her diagnosis. "My body was so depleted.. the side effects so severe... the week of Christmas, my oncologist gave me a gift, no more chemo."
"In February of 1989, I was declared in remission," Rachel says. I remember that and I also remember thinking, Great, it's over, she beat this, what a relief! But, Rachel says "my doctor told me she would never considered me cured because my risk of recurrence was just too high."
The rest of high school included gammaglobulin infusions, because "for some reason my immune system was unable to recover," Rachel recalls. She also endured a relapse scare.
"I made it through college relatively unscathed... and permanently moved to Boston." But unfortunately her "carefree" college days where short-lived. "When I had my annual echocardiogram in 1999 to check my heart for problems from the radiation and chemo, my physician called and asked if anyone ever told me I had a hole in my heart. This had nothing to do with the cancer... but it's unclear why this wasn't discovered earlier," Rachel says. An attempt to try and close the hole failed and Rachel had open heart surgery in March, 2000, at the age of 24. The following couple of years included a thyroid cancer and skin cancer diagnosis, both of which were successfully treated.
Finally, in August of 2002, a happy occasion, her marriage to Darnley, who goes by "D". She got pregnant with her first son on their honeymoon. "Avery was the best surprise I've ever had! I did really well with my pregnancy, Rachel says. I was super busy, finishing grad school, doing an internship and working." Rachel and her husband decided to try and have another baby when Avery was about one. "We turned to a fertility doctor after six months. We were given less time to try and conceive naturally due to my high likelyhood of being unable to get pregnant. " But it worked. Another son! But, while she was pregnant, Rachel was diagnosed with congestive heart failure. She was given medication but Alden was "delivered at 28 weeks and weighed 3 lbs. He was incredibly sick. At 3 days, doctors told me he most likely wouldn't survive." He was treated and "NICU staff began calling him the miracle baby... He is now an amazing, normal, active 8 year old."
Rachel continued to recover after Alden was born and "was in the best shape I'd been since high school." But, then she started losing steam. "My only long term chance for survival is to get a heart transplant, but patients whose restrictive cardiomyopathy is caused by radiation treatments are often not considered for transplant as they're often not considered a good risk." Then, this past May, a biopsy of a breast lesion came back precancerous, so she made the decison to have a mastectomy.
Now, she's waiting on more test results to determine the next step. "Radiation late effects usually begin showing up 20-30 years after treatment. I'm 26 years out from my radiation therapy. This is one of the major issues facing childhood cancer survivors" Rachel says.
Despite her life long health struggles, constant ups and downs and being in and out of the hospital, Rachel is often smiling. Her strength inspires me beyond words. So, of course I had to ask, how do you do it? "I have minimal memory of life before I got sick. I have grown up in the medical world and am raising a family in it. Dealing with illness is just part of my life, Rachel says. I won't ever be able to change it or escape it so I'm left with two options: be miserable and make illness my life or enjoy what I have and have a life despite illness. You have to decide whether to be a sick person or someone who happens to be sick. "I'm not always happy.. but I try not to wallow in it.. I have a pretty great life, I have a wonderful husband, two amazing boys, I was able to go to grad school and for several years had a career I loved. I try hard to remind myself what I have versus what I've lost."
Rachel is an administrator for Childhood Cancer Survivors United on Facebook. She hopes her story educates other survivors about what to expect for their future as well as shows people what kinds of treatments can be harmful to children. She encourages people to educate themselves about childhood cancer, share what they learn, "work to make the color gold as widely known as pink, write to your elected officials and encourage them to vote for legislation supporting childhood cancer research."