My name is Darlene, and this is my GIST Member story. I come from the northwest corner of Indiana, just a 20-minute drive from the scenic Lake Michigan Dunes to the north, or 25 minutes west to Gary, murder/crime capital of the country. Actually, we live in a rural area, surrounded by corn and soybean fields and the occasional pig farm when hog prices go up, which hasn’t been lately. My children’s public school includes K-12, and my daughter’s senior class boasted 33 graduates.
This is where my GIST Member story begins:
I am the healthiest person in Indiana, if not in the entire country. I am so seldom sick that I actually surpassed the quota of sixty sick days that you’re allowed to accumulate, and I ended up not getting anymore because I never used them.
Then last fall something happened: I got hives. This was a month-long, soles-of-the-feet-to-top-of-the-scalp, 24-hours-a-day-for-a-month type of hives. At first I was reluctant to see my doctor; when you raise silkworms, grow 400+ species Madagascar hissing roaches and snakes for pets, it’s easier to go out of town for the weekend just in case it’s only an allergy. But the hives got worse.
My doctor, when I finally saw him, nodded sagely and told me it was an allergic reaction. “Try Allegra,” he said. Thankfully, the hives went away within 24 hours. But the very next day, a bee stung me, and my legs swelled with water, and my ankles slopped over the tops of my shoes.
The good doctor thought maybe I should see an allergist, who had an opening a week later. Meanwhile I had to stop the Allegra, so now I was a humanoid hive factory with tree-trunk ankles sprouting from my shoes. In a way it was rather comical— until the allergist told me, almost immediately, that it was no allergic reaction (the bee had stung me in the hand, not the legs), and, after he touched my abdomen, that I had some sort of massive growth that merited immediate investigation.
The next day I got a CT scan, and the day after that I was given an appointment to talk with a surgeon. I was supposed to pick up my scans on the way to his office, but he had an emergency surgery, so I picked up the scans and went home. That was when I saw the “STOMACH CANCER” label on the film envelope. How on earth, I wondered, could anyone think I had stomach cancer when I hadn’t even had a biopsy? Surely this was a mistake, because it is common knowledge that most growths, masses, tumors are benign.
Still, I couldn’t resist a peek at the pictures. I know very little about medicine in general and x-ray pictures in specific, and the little I do know could easily fit on the head of a pin with enough room left over for the Lord’s Prayer, which about that time I was thinking I might need. Even I could see that the very biggest thing on the films didn’t belong there.
The next day, when I finally saw the surgeon, he confirmed it, and the wild rumpus began. As it happened, it was my vacation week, so I still hadn’t used any sick days. According to the doctor, surgery was pretty uneventful, except for the size of the tumor: 30x21x14 cm., or as he put it “the size of your head.” (Hopefully, my head isn’t as ugly, though.) He was about as proud of retrieving it as my cat is when she drops a dead mouse on the front porch. He even had Polaroid photos of his hands and his partner’s lifting it out of my abdomen, which he showed my husband immediately afterwards.
All right, I can hear at least half of you wondering if I wasn’t an “obese beast” if I hadn’t noticed a growth of that size, so let me tell you right now that while I’m not exactly anorexic, I thought I was fairly normal looking, though waist-less. As anyone who occasionally watches the diet/exercise gurus on Oprah’s show knows, middle-aged women tend to either gain weight in their hips, developing a pear shape, or they gain around their middle and have an apple shape. In my fifties, I just thought I was one of the apples.
Now, here comes the good news. That was the only tumor, and as big as it was, it didn’t involve much of my innards that were terribly important, just a very small portion of stomach and my left diaphragm. So after a 16-day hospital stay, (True love means your husband will feed your snakes if you’re in the hospital.) I was home, feeling reasonably well physically, but pretty shaky emotionally— until I linked up with the Life Raft Group, that is.
Using hindsight I ask myself if there were any signs I’d missed that should have given the doctor or me an earlier clue. There was the time 3 years previous that I had mentioned to him I felt a fist-sized lump in my left side, but he said there was nothing amiss, so I never mentioned it again. And there was the fact that I was anemic, but he said to get some over-the-counter iron pills, and that was the last either of us thought about it, although we never did another blood test to see if the iron pills helped (Don’t worry, I’ve finally figured out that this particular doctor is a tad “slow”, and I have not seen him since he sent me to the allergist.).
Then there was the fact that over the last couple of years I’d gone from my normal 5-6 hours of sleep to eight, but I just thought that now that I’m middleaged, I was slowing down to normal. Let’s face it, I am the healthiest person in Indiana, if not the USA, and I am never sick.
After a couple of stupefying weeks home from the hospital, I was appalled at myself when I realized I had just spent an hour watching Dr. Phil toilet train babies on TV! (My youngest “babies” are both 20 years old!) So in just under 5 weeks from surgery, I went back to work full time, where I am the head of a small town library reference department and known to the locals as “the woman in charge of useless information.” My spirits took a definite change for the better as soon as I was being asked to settle the daily bet at the local body shop— what was the name of Poncho’s horse on the 1950’s TV show “The Cisco Kid”? (Answer: Loco)
And things have gotten better every day since. I was fortunate enough to meet some of you at January’s Chicago Life Raft members’ meeting, which gave a real boost to my morale. And last week, my 6-month CT scan showed no tumors yet, so I’m not even on Gleevec (but I take daily comfort and courage from the postings and advice the rest of you so generously offer).
Actually, I can honestly say that I’m better than ever. I haven’t had a migraine since surgery (I used to have 3-4 a month). I walk at least 3 miles a day, uphill no less, and have done twice that without tiring. I only need 5-6 hours of sleep, although I sometimes lie in bed and read for another hour. And (this is the very best part) I’m a perfect size 12 again. I never told anyone at work what exactly was wrong with me; when I came back, the common consensus was that it must have been lyposuction and a tummy tuck, and I didn’t tell them differently. So here I am, looking forward to putting in our annual half-acre garden in a few weeks and going to the big city (Indianapolis) for the state’s annual librarians’ convention, where I’m planning to walk downtown and gape at tall buildings.
Life is good.
Bye for now from the healthiest feeling person in Indiana, maybe in the USA,
Questions no one wants to face:
Five years later, Rigg’s still got it
By Darlene Rigg
This is the second part of a two-part series by Rigg. Last month, we published her listserv post from 2003, this month Darlene gives an update on what has changed in the last five years.
This October is a bit of a milestone for me – it’s been five years since surgery that removed a 10+ pound GIST, quite easily the most shocking surprise of my life. I remember pressing the chief oncologist at our local hospital as to my life expectancy and hearing her say with a smile, as though she were being generous, “I think I can promise you two years.” As soon as she left the room, I burst into tears; I wasn’t quite sure if the doctor’s “two years” meant two years before recurrence or two years before a miserable death, but in either case, it was at least thirty years too short for this 52-year-old woman.
As soon as I got home from my 16-day hospitalization, I threw out all the plastic cups in the kitchen cupboards. Then I replaced them with the pretty drinking glasses I’d always reserved for company. In the past I could never bring myself to risk them on an everyday basis (not with four kids in the house!) lest they all break. Now I was kicking myself for not treating my family and myself at least as well as we treated our guests.
My newfound pleasure with the drinking glasses, however, did not inspire me in other facets of my life. Never having been much of a shopper, now I was even more reluctant to buy anything new. Why buy a new pair of shoes, for instance, when the ones I had in the closet might make it another two years? I felt exactly the same way about my sewing supplies, even though I am an avid crafter. With a dozen unfinished projects in the works and a mountain of sewing supplies, I wasn’t about to buy more just to have it all go to my sister-in-law Charlotte after my demise. It wasn’t that I had anything against Char, who enjoys sewing as much as I do, but I just wasn’t in the mood to “share my toys” if I had to die to do it. I’d rather have no toys at all.
Finding the Life Raft Group on the Internet soon after my diagnosis helped to ease my sour attitude a bit. Being able to speak with fellow Gisters face-to-face at a Chicago meeting was an even bigger blessing. Here I found living examples of how to temper fear and suffering with courage, sympathy, grace. Shamefully, I grasped at every hopeful story and took everyone’s experiences to heart, but my negativity was slow to disappear. In a blatant fit of self pity I splurged on a hundred candles, and envisioned my husband Steven using the leftovers to send me out in a blaze of glory.
Fourteen short months after my GIST surgery, another health problem led to a D&C and a cone biopsy. The gynecological oncologist informed Steven and me, “I won’t know for sure until next week when the results are in, but it looks like you may have another type of cancer.” That next week of fear and uncertainty, was one of defiance, too: cancer might snatch me bald-headed, but I wouldn’t be wasting my time fiddling around with wigs! Meanwhile, I girded myself up to such a high level to hear bad news that I wasn’t prepared for the good news – although I needed an operation, I didn’t have cancer. And that’s how a hysterectomy became my favorite Christmas present that year.
So here I am five years later. In many ways I feel like a fraud when I read everyone’s posts. I don’t feel like I can contribute much; I’m still GIST free and have never been on Gleevec, so I don’t have any useful advice or experience to offer anyone. Only hope.
Once, I asked the doctor whether my original diagnosis could have been wrong, but she assured me that it wasn’t, even though GIST had never recurred. What can I say? If GIST returns, it certainly will be no surprise, just a disappointment. For now, however, hope has found a crevice in my spirit and has taken root.
Meanwhile, the world keeps spinning. Sadly, my candle supply has had to be replenished, and it breaks my heart that so many friends (both the ones I’ve met in person or through e-mail and the ones I’ve come to love just from reading their posts) are gone. Our family has changed, too. With both sons married and our youngest daughter in her own apartment, we are empty nesters now. My reluctance to go shopping gave way as the most colorful floss and yarns and the brightest pieces of materials dwindled from my stockpile. The house is once again filled with crafts and sewing projects in every stage of development – and enough baby afghans already finished for each daughter-in-law to produce a set of quintuplets.
These days I find myself working just a little harder than I used to and playing a little bit more, too. Last week I finished canning the tomatoes (100 jars of the best pizza sauce on earth) in anticipation of plenty of company this winter, while Steven bought season tickets to shows put on by our community theater guild (because we love musicals and my husband knows I refuse to kick the bucket and let his sister use the rest of my ticket).
One more thing – I’ve also bought more drinking glasses. The ones I had five years ago, formerly used just for company, keep breaking, dammit! I guess I didn’t have a lifetime supply after all.
Life is good.
Darlene in Indiana