Hodgkin's at 20. Needs Provigil (From Kelly)

I would like to begin this email by conveying my RELIEF at seeing this book on the shelf. Chemobrain ("PCCI") really needs to be brought into the forefront and stuck under the collective nose of the oncology community at large, including the NIH and the FDA.

I suppose I should tell you "my story" first so you can understand the impetus for writing this. I had always been "academically-inclined" and top of my class. I was the valedictorian of my high school. I had won countless honors, awards, and scholarships. I had scored a 790 on the SAT verbal, just 1 question shy of a perfect score. My brain DEFINED me. I went to Villanova and I LOVED it. Every moment of it. My mind was finally being opened and challenged in ways it had never experienced. The world was my oyster. I excelled in languages AND science. I was torn between pursuing the law, medicine, or scientific journalism. I had the opportunity to pursue any one of them.
But when I was 20 years old, a sophomore at 'nova, I contracted a horrible throat infection. 3 rounds of antibiotics later and I still felt like crap. I had fatigue like no other. Horribly itchy legs (without a rash) for almost a year ... and a huge lump poking out from just beneath my collar bone - "sub-clavicular."

My primary ran a batter of tests and assured me I was young and healthy. He did refer me to an otorhinolaryngologist, who ran some of his own tests and determined it was just an abnormally large lymph node that was a remnant of that horrible throat infection. He said the sinus of the node had stretched out and it would take time for it to go back into place. I was too young for cancer. My blood tests came back perfect, and surely if it was cancer, especially a lymphoma, my blood would be abnormal. That's what they told me. The ENT told me I was young, and healthy, and he didn't want to scar me for a little lymph node. He told me to come back in a few months and he'd take it out if it was still enlarged.

I waited about a month before I decided to take matters into my own hands. I called the ENT and told him to schedule the biopsy, I couldn't live with this lump and it just didn't feel right. He called me 2 days after the surgery. He was in shock and told me it was Hodgkin's Lymphoma. He kept apologizing over and over but I couldn't even hear him anymore. I received 6 rounds of chemo. I still wasn't in remission yet and had to have 5 weeks of radiation.

This was 7 years ago. I'm healthy, relatively ... I just found out my thyroid is underactive, due to the radiation. I have to have breast MRIs and skin checks, to screen for breast cancer and melanoma, after the radiation. I gave birth last summer, nothing short of miraculous. My son was premature and underweight but otherwise healthy. He is my joy and my purpose.

But I never REALLY recovered from the cancer. I developed PTSD which went untreated. I sought several therapists and they either dismissed me, or believed me, but threw anti-anxiety meds at me.

Worst of all - my brain. I can't focus long enough to read a magazine article, let alone a book. The best way I can describe it is that things just "fall out of my head" - words, thoughts, entire sentences. I have been known to stop mid-sentence and have no recollection of what the conversation was about. I've walked out of stores and can't remember where I parked my car. I've sat in my car in my driveway or a parking lot and have absolutely no idea how I got there - I can't recall driving there or the route I took, nothing. I can't parallel park anymore either!

Visually and mentally, it's also "foggy" in that I always feel like I'm viewing the world from under water. Like I'm several feet deep in a pond and everyone else is on the other side, "through the looking glass." The "water" distorts my vision, my hearing, my perception, my understanding. It slows the messages and visual cues, it mutes them.

My career has suffered. My personal life has suffered ... my confidence and self-esteem have taken such horrible blows.

My oncologist is an angel and recognizes chemobrain. She's done her own studies, based on me in fact. I was "highly-functioning" (her term). I was her youngest patient. She prescribed Provigil. It was good for the first few weeks, so I went on and off of it again for years, and finally off of it when I was pregnant. I started taking it again a few months ago and talked to my doctor about it not being as effective as I'd like. She increased the dose from 100 mg to 200 mg and WHAT A DIFFERENCE! I felt like a new person. For the first time in almost a decade, I felt like "myself" again - a woman I didn't even recognize anymore. I felt like I had my "edge" back!

But then I started a new job (a company that specializes in radiation oncology shielding, ironically enough) and this new insurance doesn't cover Provigil. I can't afford to pay for it out of pocket. We're appealing the decision, my doctor and I, but there's no guarantee. We're considering Ritalin, but she is weary of it because of the potential cardiac issues, and I had been on Adriamycin, which is known to cause heart problems in the long-term.

The person I was died with that first chemo infusion. Maybe even with the biopsy. My brain no longer defines me - cancer does. I want to fight for more awareness. I want to fight for more research. I want to fight for FDA approval for drugs like Provigil, so that insurance companies can't take the easy way out anymore. So many people have said they'd still choose chemo even if they knew about chemobrain. I'm not so sure. Yes, now, if I relapse, I would take the chemo for my son's sake. But if I had a crystal ball, I don't know if I would have chosen chemo. Especially now without the Provigil, and having been there to know how good it could be again.

All the best,
Kelly