Chapter 2: Sink or Swim

Mom's chapter 2 is similar to Loie's chapter in section one.  It is long and has several themes critical to the rest of her book.  I'd like to break her "Childhood and Adolescence: Not for Sissies" chapter into a few entries, then post an unabridged version later this week (okay, by Christmas for sure).

Prosthetic Eyes and Foreheads (wait for it, wait for it!)

A few years ago Eric and I were sorting through stuff in the house when he accidentally shocked himself--not with a live wire, but with a box containing two of my mother's prosthetics.  He gave a nervous laugh and handed the box over to me saying, "Look, you have your mother's eyes."

This photo tells me all I need to know about mom's esteem with the prosthesis.

Mom's long relationship with prosthetics began around age 10 and some highlights from Chapter 2 are below.  I'll scan in the 8 page chapter and post it unabridged this week, but for now this will do.

Fourth grade also marked a transition from the gauze bandage taped on my face to an artificial eye prosthesis.  It required another surgery to line the eye orbit with skin from my stomach....I was so excited about not having to wear the gauze anymore and have questions about who hit me or what happened to me.  Over the years I had asked my mom if she couldn't just paint an eye on the gauze or behind a Halloween mask for me.  I really wanted to blend in.

We started trips to downtown Chicago to get the prostheses started.  The clinician was a wonderful artist and the moon shaped part of the eyeball showing was exactly like my left eye....Sometimes it fell out, sometimes [the glue] burned, sometimes it was okay.  They got me a pair of glasses, not that I needed them, but that they helped to camouflage the seam of the circle of plastic surrounding the eye.

It took me a while to realize that although people who didn't know me didn't ask em as many questions [with the prosthetic], they were now asking my friends and family.  They were too embarrassed to ask me because it looked like I thought everything looked okay, which it didn't.




Mom and I saw TMBG in DC years ago at Wolf Trap.  What a great summer day, prosthetic foreheads and all.  The song spoke doubly to me today, "where was I, I forgot the point that I was making," seems to be the theme of the day!

Chapter 1: Round One-Neuroblastoma 1949

Loie with her light and life on her shoulders.

Blog's are curious things- I'm not sure how much one is willing to read.  So in this precious space I need to convince you to read Loie's chapter in full.  Here is why:

• Advocacy has come a LONG way  Loie's account provides the historical context of cancer in 1949 from the diagnosis of neuroblastoma, to surgery, radiation and follow up.  For example, Loie is told she can not tell her daughter she lost the eye FOR A WHOLE YEAR!!!!  They also had to promise they would not tell family or friends that it was removed. 
• Doctor-patient relationship  This critical relationship starts for mom at age 5 and is a reoccuring theme until Dr. Sisson in 1999.  House calls aside, Loie recounts visiting Dr. Stephen's at HIS bedside, he near death with blood poisoning.  He observes mom's own surgery in a wheelchair, and his wife is there. 
• Coping  All her life Loie coped with guilt and grieving.  A lot of early stress was due to hospitals as an institution.  For example, parents then were not allowed because, "[t]he nurses could not deal with the children's tears if they said goodbye to the parents each day." 
• Childhood friends  One of her homecoming presents was a double sized bed so she could have sleepovers.  Overnights must have felt a long way off when they brought their fragile child home with a shaved and bandaged head. 
• Radiation treatment in 1949 (just typing it makes me shudder) The chapter ends with mom's radiation treatment.  Loie is allowed to go in the x-ray room with mom, both with lead aprons on.  She read to mom as she lay on the table.
• The "C" word  Loie describes cancer as "a frightening thing from which almost no one at that time recovered."  The family physicians reaction to mom's terminal label offers Loie hope that sustained over 50 years.
• Cost of care  The surgeon's estimates of $10,000 to remove the cancer cells fill Loie's heart with dread.  The bill arrives for only $250.  "If I could I would have kissed his feet."  Loie sent Christmas cards every year to the surgeon, and unbelievably he would always answer with thanks.
• Proverbial when it rains, it pours  Adding to a year of heartache, both of mom's grandfathers die in 1949 after the surgery.  The whole family must have felt stunned.  Sadly I understand; we lost mom and Loie both to cancer in 1999.

All these themes are set up in Loie's text and re-occur throughout mom's book.  (yes, the scan is sideways but just print it or download and rotate it, a thousand pardons).

Chapter 1: In the Beginning

That's right, we're going ALL the way back!

I've added some photos, but the intro is just as she wrote it.  Enjoy...

Janet age 5.

I think I would have been a shy child, adolescent, and young adult dreaming of growing up to be a competent and well liked teacher (with inspiration on some days), a loving wife and mother living in a safe middle class community: security and preserving the status quo the major goals for which I’d strive. I think I would have made a good grandmother, a stable member of my community, local school district, and home church. I think my goal in life would have been to do the right thing, to make things look good (especially on the surface), to avoid rocking the boat and getting negative attention, to be considered by all a “nice” person. Since my female relatives generally die in their 90’s in nursing homes, that probably would have been my lot as well.

Jan age 8.

But this was never to be. My bouts with cancer throughout my life have left me at the mercy of any staggering drunk, precocious child, or agitated sojourner who happens to cross my path and loudly comment on my appearance. Life’s timing has often left me without financial resources, questioning life’s fairness and meaning, struggling to get insurance, a roof over the heads of my children, and find a faith that would carry me through such rough times.

Jan on the far right in the back yard of the Dunton house, Arlington Heights, Ill.

At the same time, my brushes with cancer and the visible different in my face have brought into my life experience such extraordinary people who have enriched my life into dimensions I could never have imagined from my idyllic, safe, little world. The places I have been, the things I have done are so far from my original expectations of life. I have to come to recognize it as “stretching” into the new from the old. I am covered with stretch marks!

Jan as a teacher.

So many people have influenced and supported me these 53 years of my existence. At one point in 1992 I put out a call to friends across the country for guided imagery/visualization tapes to help me make it through a brutally rough time after the neutron radiation, and more than 30 tapes arrived in the mail in the next two weeks. I have decided to share some of these people with you as I write, to weave them into the story. I’ll begin with my mother.

Loie, mom's mom, sitting in the foreground.

(note: I can't describe my reaction to these photos.  I never saw my mother with two eyes, so her childhood pictures have always been a bit of an enigma.  In more ways than one, I can't recognize her as my mom until after she lost her eye.)