Karen's Story

Photo 1: Jim and Karen, their son Evan at two months, and their dog Max

My son naps and I have time to write my story, praying that I don't get cut off.

I'll try to tell Steven's story without too much of the surgery/symptom "resume"--if I do that, you may not be able to distinguish him from anyone else here, and that would be a shame.

I've stated this before--if he were to succumb to EC, the domino effect would be catastrophic, as it would be for any family's "rock"..the pillar of strength...the eldest son who keeps us all together.

When we lost my 61-year-old Dad to lung cancer in 1989, our world fell apart, but Steven glued it back together. He cried buckets as he saw Dad's lifeless body in that hospital bed, and it was the first time he lost composure, too, as the nurse told him about a morgue, but after a few moments, he got it together. It was tough to call his wife Jane from the car phone and break the news about Dad--very tough because they had to tell my hero-worshipping nephew, Steven's then two-year-old son, Scott.

It was very tough to get married that same year--I was so jealous of my three friends who also got married in 1989, who had fathers to walk them down the aisle and dance "Daddy's Little Girl" and "Sunrise, Sunset" with--but Steven kept it all together, despite a terrible on-going crisis of his own. (Jane had just thrown me a beautiful bridal shower a few weeks before and she was to be a bridesmaid, but she took very ill from pregnancy complications and couldn't attend. I was devastated, but Steven knew he had to be there for me in lieu of Dad, despite the fact that Jane was in trouble. And everytime I look at my wedding album and feel self-pity over the absence of my beloved sister-in-law, I stop and think of my gorgeous five-year-old niece, Marissa, who's so healthy and happy and fabulous..and then it's OK that she didn't force herself to attend and possibly jeopardize the pregnancy...) I started to cry from behind that bridal partition--so many people there loved my Dad--but by the time we were cued to walk, Steven was cracking jokes and making me laugh! No tears...no self pity...just joy and laughter!!

Steven continued to be the rock...he moved Mom out of her house of "ghosts" and handled her affairs. I want to stress here that he's more than an indespensible "important" person--he's so loving and irreverantly hilarious! If Howard Stern were injected with megatons of sweetness that preserved the irrevent wit, you'd get Steven.

My brother always boasted a teddy bear physique, but no one was turned off by this...He's had tons of model-beautiful girlfriends, (Jane among them) and every Italian and Jewish Mom would love to feed him.

I think of the Steven that was there when I needed a college loan, the Steven that saved our family dog from a near-death experience, the Steven who blurts out an "I love you, sis" in a swimming pool for no reason, the Steven who was the only one who cheered me on as I won $1,100 as a contestent of the $20,000 Pyramid" back in college. It was almost OK that he walked me down the aisle in lieu of Dad, 'cause he's like a Dad.

It was 'cause of Steven that I decided to get a poodle Labor Day 1994--I see how great he is with his Gigi so we got our beloved Max. And it was 'cause of Steven and his wonderful crew that I, at the ripe old age of nearly 39, decided to give in to my husband's request to try for a child. 

I was so lucky to get pregnant, and Steven and Jane were the only ones who knew about it..they videotaped Mom's reaction at my Thanksgiving dinner and life was just glorious. We sold our condo and bought our dream house within weeks..my pregnancy was the smoothest on record, and I remember eerily thinking last April, while making a bed, "things are too great..when is the axe going to fall?" Premonitions are so vague, but something told me not to choose David as my son's middle name, 'cause Evan David" sounded too close to my brother, "Steven David." (We settled on Evan Daniel) I also kept thinking of the name "Brooke" for my brother Bruce..very strange since amnio confirmed we were having a boy this time, but I thought of Brooke and the strange, weird feeling that one of Mom's kid's was in trouble.

The whole summer was built around my baby, whom Jane and Steven considered their "third" kid. They drove 75 miles every weekend to hang clown fixtures and drop off baby clothes and use our pool and BBQ. It was a wonderful, blended family--Steven was even in the room with Mom and Jim while I was in labor. He had casually mentioned about burping all summer, and I attributed to the same thing I have--hiatal hernia. Now that I think about it 'though, he'd get a strange look in his eyes as he'd look up toward the sky whenever I ask him how the burping thing was going, and if he went to a GI guy.

On the day of Evan's "bris", (circumcision ceremony) the rabbi read my following words in front of a packed crowd: "At this time, Karen and Jim would like to mention two very special people in Evan's life, Uncle Steven and Aunt Jane. Their eagerly awaited anticipation of his birth was nothing short of beautiful. They offered their time, advice, and hours and hours of hard work and nesting with baby goodies. They offered all of this with laughter--with their hearts. Most importantly, through their own children Scott and Marissa, Evan's terrific cousins, Steven and Jane gave Karen and Jim inspiration. They define the very essence of parenthood, with all its joys--with its ups and downs--with everything tied up into one beautiful package. Evan is truly blessed to have them as godparents, and the new Mom and Dad feel very lucky to have these wonderful people in their lives."

Steven burst into tears after this was read, and I thought it was because of the voiced sentiments. That night, when the company left, I had a terrible premonition that someone was in trouble. I thought it was me, truthfully, because of C-section complications, but I was hysterically crying, and it took a lot out of Jim to calm me down.

A month later, I learned the awful truth.

Evan was just over a month old and we were enteratining our friends Andi and Mike and their daughter, Lexi, a friend of Marissa's, when the phone rang and Steven casually mentioned that he wanted to come up. He backed off when he found out I had company, and Andi herself insisted that he come up anyway..their daughters liked each other..it was a great day, but he wouldn't come up. I was crushed, and when Jim asked him if everything was OK, he answered "sort of." Jim didn't tell me this 'til much later, as we drove to a Mexican restaurant, but it didn't sit well with me.

After my company left, I called. It was 9:10 PM on Sunday, August 27th--a day that shall live in infamy!

I called and asked him dead-on: "what does "sort of" mean?"..There was a long, icy pause..I was hoping the cord got twisted but I knew better..he muttered something about "calling me back" and "having to go to the bathroom" but I knew better. I said: "Is this something to do with your burping? Are you sick?" he finally answered, "yes, I have a tumor on my esophagus!" I went to pieces, thinking of Dad of course, and he told me it was benign. I didn't believe him, but he swore that CAT-scans were clean and that the biopsy showed no cancer--only something called "non-specific" cells, which meants neither benign nor malignant. He told me he had something called "Barret's esophagus" and he was facing surgery. He almost had me convinced it was as simple as removing a cyst--until he made me swear not to breathe a word to Mom. I immediately went to the Mayo Clinic on the CD Rom and discovered that Barrett's was only a pre-cancerous condition--but that tumor's were ninety-percent malignant with a poor prognosis! And then..then..I lost it. All I could think of was how close he is with his five-year old daughter, and I was going nuts as I thought: "Marissa will not remember him!" We were already having sleepless nights with a month-old son, but I was a wreck.

I called Jane the next day who was very calm..she said: "If this was life-threatening, don't ya' think I'd be hysterical?"

They came up for Labor Day weekend, their last visit to our NJ home, and he was cracking morbid jokes that had truth to them. Like when Marissa asked if I could have a daughter next time, he says: "Yeah, and they'll name her STEPHANIE!" He asked if I had any messages for my friend Art, who died of AIDS a few months before, and he asked if either Bruce or Jim's brother could be Evan's godfather or guardian. To quote Alicia Silverstone's "Cher" in "Clueless"..."AS IF!!!"

Mostly, 'though, Labor Day weekend was great..we went to the boardwalk and rides and used our pool and let Steven pick the restaurant--he went to town at a place called "Mom's Italian Kitchen" which is just the kind of place you think it is. He'd lament: "this is the last time I can eat like this."

Then came September 8th, surgery day, by the top surgeons in the world at HUP. (The Hospital of the University at Penn) Our brother Bruce, who is sadly estranged from the family for reasons much too complicated to get into in an open forum, came through and drove him to the hospital, giving me updates throughout the day.

Surgery went fine, as I expected it would. I told him if there were bad news, I needed to know by telephone--that face-to-face would kill me. Bruce claimed that the day after surgery, Steven said: "now don't bullshit me here..am I like Dad? What did the surgeon say?" God, I started to get nervous then..his kids were shielded from everything, BTW. They only knew that "Daddy had a boo boo in his belly"

We went to visit him six days after surgery--Evan's first long road trip to Philly. He was great in the hospital--very thirsty but hitting on nurses and being Steven..and begging me to wash his hair, of all things. I walked out of that room ecstactic..totally convinced he was going to pull through. Jim and I had a celebratory dinner.

On Saturday, by phone, Steven told me biopsy results--adenocarcinoma, (what Dad had) deep within the well-differentiated tumor, and in one--possibly two--of the seven removed lymph nodes. I wasn't shocked, because I knew he had an oncologist. I told a friend, "well, I don't think this will kill him, but he may die of a cancer-related death in say..thirty years."

I've been on an emotional roller-coaster ever since, mostly because of "Karenoia"--I'm convinced he's hiding something in an effort to protect me and Mom and most likely, his 9-year-old son and five-year-old daughter. Jane remains upbeat, calm..fabulous!! (And she's the one with the most at stake here) The initial game plan was six weeks of chemo, beginning Monday, October 16, 1995, followed by a three-week rest period and then radiation for five weeks.

The first time I saw him after the hospital visit was Thanksgiving weekend..a cousin threw a family party and Steven looked so gaunt and hairless, but he was still my wise-crackin' bro. A month later, this cousin suddenly died, and Steven and Jane cried buckets at the gravesite, a few stones away from my Dad's. The snow was bad, but I wanted Dad to meet Evan just the same...and their grief scared me, even 'though it was rational..my cousin Barbara was terrific!

Meanwhile, so many people have convinced me that EC is NOT as deadly as I feared. Marc Wolfgram and Elliott "Sandy" Robinson have looked at all the facts as they've been told to me and they've given me hope. If Steven lives to see Evan turn three, there's a good chance he'll be there to light a candle at my son's bar-mitzvah..he just HAS to be, or else God better figure out a way to bring my Dad back!

Steven's chemo has been extended until May, something that initialy disturbed me. Sandy feels that there's a chance it's metastisized, but the extended chemo more likely means added insurance.

So there you have it. We wait 'til May, we hope for the best, we sweat our Cat-scans and endoscopies, and we know in our hearts he'll pull through. Evan's awake and cranky so I have to wrap up. Thanks for being a caring audience.

Love,
Karen

In December,1998, Karen added the following:

I just wanted to add on this three year anniversary of the founding of the group that Steven continues to do well.  He looks and feels terrific, has resumed full-time employment, and has made time to enjoy his family.  His CAT-scans have all come up clean..something we all thank God every day for.  I want to give the Wolfgrams a special thanks for breaking down some barriers..Last spring Marc and Steven had a conference call and Steven temporarily left his World of Denial, a move precipitated by the recurrence of a cousin stricken with a rare bone cancer.  (Who, incidentally, as of this writing on 12/98, is doing well, too)  Marc and Tammy Wolfgram have encouraged Steven to join our Listserve..his contributions are brief, but he's sincere, and I think he's led many people to the healing hands of Dr. Haller and Dr. Whittington at the University of Pennsylvania.  True, we still have to wait about two years until he's "cured" (meaning he has as much chance of this being a  fatal  disease as someone who never got it) but statistics suggest he's on his way to cure.  He's long past that precarious "eighteen month" point, when recurrences are most likely. Thanks to all who've read a sister's love story to her brother.

Editor's note: Karen's story is very personal and heart-felt, and there are a lot of names included in the story. Rather than cut anything from the story, we (with her permission) added this "cast list" help the reader keep the names straight.

In order of appearance:

Karen Evan Steven Dad Jane Scott Marissa Mom Gigi Max Bruce Jim Andi and Mike Lexi Barbara Marc Wolfgram Elliott Robinson

author/narrator Karen's son Karen's brother Karen and Steven's father Steven's wife Steven and Jane's son Steven and Jane's daughter Karen and Steven's mother Steven's dog Karen's dog Karen and Steven's brother Karen's husband friends Andi and Mike's daughter and a friend of Marissa's a cousin/friend who died a friend from the EC-Group, Café webmaster a friend from the EC-Group

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