Seeking God Knows What

I received in the mail yesterday the list of questions to think about for the survivorship panel. The questions really aren’t surprising considering the topic “Thriving as a young adult/childhood cancer survivor” but it is a good thing to receive them in advance so I can organize my thoughts about them (I’ll probably have to pare down the quantity of things I want to say!) and the topic in general.

What was your diagnosis?

Wilms’ tumor, favorable histology, stage III due to tumor spillage during radical left nephrectomy.
Treatment: 16 months chemo (weekly Vincristine and dactinomyacin every 9 weeks for 4 days -that’s my memory of it anyway!); 6 weeks weekly full abdominal radiation. I’d have to look up the rads of radiation and the amounts of chemo. Part of National Wilms’ Tumor Study Group Study #3. On looking this up now, I was in a group that did not receive doxorubicin, now known to cause heart problems, so I was “lucky” in that sense.

What has the primary “late effect” been?

Physically, premature ovarian failure caused by the radiation treatments, resulting in infertility. Linked to that is that I’m on the edge of osteoporosis because of low hormones during my “growing years”.

What do you think has been your biggest challenge in regard to your cancer and recovery? Either physical or emotional.

My biggest challenge has been far more emotional than physical. Physically, I am as healthy as the average 29 year old woman. I have a faded scar that healed well, I do not have scoliosis as some do from the radiation treatments, or really visable muscle atrophy in that area. The ovarian failure is only visible in the sense that I am on hormone replacement therapy, same with the osteoporosis. Even with the low density of my bones, I have never broken anything. I used to be “jealous” of the kids who got to have a cast or crutches- I never even sprained anything!

Emotionally, it is entirely different story. I have a genetic predisposition to depression and anxiety (my mother has been severely depressed, suffered from intense panic attacks and anxiety over the years; I suspect my maternal grandfather has had some social anxiety- he was never much of a participant in family gatherings or large crowds, hardly ever travels anywhere and my grandma goes a lot different places)but I do think being a cancer survivor exacerbated it, especially as I grew older and more capable of understanding what had happened.

My anxiety level is usually pretty high. I have to deal with a lot of stress prior to visiting someone in the hospital. I hate going- sweaty palms, nervous butterflies, the whole deal. My younger sister had a serious staph infection when she was 12 and I was 16. I managed to make it there once, she was having hallucinations from the morphine and high fever. I absolutely “freaked out”, probably the closest I’ve come to having a real panic attack and had to leave.

I’ve also had a lot of struggles with depression. The onset was probably shortly after we finished our attempts at IVF with donor eggs but before we started the adoption process. I was finally forced to get some help about two years later when I suddenly, and without reason other than I was on the edge of breaking down, quit my job. A completely “unlike Erin” thing to do. I’ve been on an antidepressant ever since which has helped and visited a couple of different therapists. Most of the time with therapy, though, I get caught up in thinking that they don’t understand the perspective of someone who has been through childhood cancer on life, so I don’t stick with it. I have been blessed with a wonderful family doctor (PH) who has listened to my rambles, in particular the last 6 months, via e-mail because I really don’t want to go back to a therapist- I have some other trust issues with therapy due my mother’s depression/anxiety treatments. He, at least, gives me a different perspective on my thoughts. Not that I always agree with what he says He has also helped me refocus my life as being a life lived in and for Christ.

Yikes, four more questions yet to answer and I still have more I would say on this one!