Sharing a
Long Goodbye
L. John Ribar
Copyright © 2011 L. John Ribar
All rights reserved.
ISBN-13: 978-0-9840182-2-2
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Published by Montello Press
An imprint of Gypsy Joy Media, LLC
PO Box 737
Montello, Wisconsin 53949
USA
This book is dedicated to the loving memory of
Lesa Dawne (Tibbs) Ribar
1967−2010
She wanted me to be a writer, but I never thought this would be the first thing I'd have to write.
CONTENTS
2-Hospital Visits Last Forever
To the reader
The first three chapters of this book recount my own journey with my dear wife Lesa, in the five years leading up to her death in May 2010. It is written as a guy might expect – factual, perhaps with little emotion. I wrote it in much the same way as I experienced it.
The rest of the book covers a lot of things that I learned and used to help deal with that time period, and the time when I found myself all alone, trying to determine where the emotions fit in with what had just happened.
We are all different. But I hope that this might let you feel that you are not alone.
God saw you getting tired,
and a cure was not to be,
so He put his arms around you
and whispered, “Come to Me.”
With tearful eyes we watched you,
and saw you pass away,
and although we loved you dearly,
we could not make you stay.
A golden heart stopped beating,
hard working hands at rest.
God broke our hearts to prove to us,
He only takes the best.
Author Unknown
The Story Begins
I never thought about dying before the cancer came. I knew people that had died—my grandparents, a friend or two, a cousin. But it never really hit home until I started sharing the long trip directly to that ultimate end.
In the spring of 2005, Lesa and I, coming off of recent divorces, had decided to get married. We'd known each other, been good friends, for almost twenty years, yet the excitement was as if we had just met. The planning of the wedding was on hold, pending the completion of my own divorce "negotiations."
Then the world changed.
In March, after an eighteen-month battle with pains coming from unknown sources, Lesa was scheduled for exploratory surgery, looking for a mass that had been seen on or near her ovaries during a recent ultrasound. The surgeons were unable to find the mass no matter where they looked. However, in looking further, they noticed an increased size in a lymph node.
The node was removed, and when biopsied, we learned the diagnosis: Adeno-carcenoma, unknown origin. She was somewhere between Stage 4 and 5 of the historical scale, having metastasized cancer cells showing up in her lymph nodes.
On that same day, while she was in the hospital recovering, Lesa was hit with a shattering blood clot that had spread the length of her entire left leg. Suddenly my sweetheart became a forced coach potato, spending much of her time in pain or under the calming influence of pain medications.
It became my task to stay at the house with Lesa and her five children, taking care of them in the best way I could.
The first summer was especially hard. Since we weren't married yet, she was still on some sub-adequate insurance. She was no longer able to work, and I was trying to maintain two residences. The children's father was being less than helpful, partly due to his own busy schedule, and partly, I think, because of his uncertainty about the whole situation. After all, none of us had dealt with cancer at that point.
Because of the lack in her insurance coverage, and the fact that I had already been out of the previous marriage house for two years, I filed for bifurcation in the divorce hearing in May of 2005. When the paperwork arrived, we picked it up, walked across the street to the courthouse, applied for a marriage license, and were married in our backyard gazebo on June 10.
The Proposal
When Lesa and I first started talking together, before we were married, she considered moving back to Utah after her divorce was final. She wanted to start her life fresh, with people and places she knew. Her only regret in making this move would be leaving me behind. Be we agreed that maybe one day I would show up on her doorstep, at which point she'd invite me in for dinner.
So when it came time to propose, I tried to make good on that promise. When we got the phone call about the divorce being finalized, I went out the back door of the house, walked around to the front, and rang the doorbell.
When Lesa came to the door, I said, "I told you I'd show up on your doorstep one day!" With a broad smile, she came out on the porch, and I asked her to marry me.
"Yes!" she said. And then, laughing, again she shouted, "Yes, I'll marry you!"
In the meantime, we dealt with the blood clot, using blood thinners and pain medications. We started the first round of chemotherapy. This was selected as the best option, since there was no specific spot found as the source of the cancer. No source means that there is no target for surgery or radiation.
Because of the chemo, Lesa had no hair on the day of the wedding; she instead wore a pink bandana and a pretty pink hat. Her smile, as always, was radiant.
There weren't many people at the wedding, and it was very hot, but it was a wonderful day anyway. Following a nice luncheon with our friends and family, Lesa and I left for Intercourse, Pennsylvania, for our honeymoon.
The trip was only for a weekend, but it was a quiet, peaceful time together. Years later, Lesa said she couldn't remember a lot about that time together, since her mind and body were both weak from the chemo. But it was a wonderful start to a long honeymoon that really never stopped until she died.
Photo 1 - On our wedding day
The chemo therapies the doctor selected seemed to work, but had varied side effects. They were not always bad. The one she had first, and again at the end, was carbotaxil, which did cause her to lose her hair.
The chemo was performed on a three-week rotation. She was in the doctor's office for most of a day getting the medications. The first day home she would feel pretty good, buoyed by the additional fluids she had received. But then she'd crash for most of a week, spending most of her time asleep.
The second week, she would be up more and interacting with me and the kids. The third week, she was almost back to her normal self, except, of course, for the swollen leg from the blood clot. That hampered her a lot of the first six months.
That first summer, the members of our church came to our aid in amazing ways. They made sure there was someone available to watch or "borrow" the kids every workday so I could continue to go to work. Without this, I'm not sure I would have been able to stay employed.
Work
The situation at work was “interesting”. I had sold my company at the beginning of 2004. They had only made one of the four payments, which were theoretically due on a schedule. When we found out about Lesa's cancer, the owner called me into his office, along with their legal/contracts guy, and offered to let me back out of the contract. He would allow me to break the agreement, and stay at home to take care of Lesa, with no job, no contract, and no insurance. Wasn't that a pleasant offer! I had to nearly beg for my job; luckily, I did get to stay until Lesa died. Then I got laid off. But that's another story.
Needless to say, the situation caused a lot of tension and stress, and included a two- to three-hour daily commute.
We got through the first summer. Lesa responded well to the treatments, and we got some time off after the first round.
We then had to deal with the painful process of getting her off the pain meds from the blood clot and enlarged leg. Once the swelling had gone down, the pain went fairly quickly; however, the addiction was still very strong. Finding the right combination of reduction that would enable Lesa to slowly wean herself from the medication, while not having the very strong withdrawal symptoms we expected, was a daily challenge.
Once things settled down, we started taking trips. We generally went to Lancaster County, Pennsylvania, about forty minutes away. Every couple of months we'd pick a new bed and breakfast to visit, find a babysitter, and go off alone for a Friday night. She loved the B&Bs and spent a lot of time talking to the owners and the other guests. It was a nice way to meet good people and a great way to keep the honeymoon going. As long as she was able, we kept this tradition alive.
We got along very well when we were able to get away alone. Our biggest problems as a couple were dealing with the kids. It mostly had to do with how we handled issues when Lesa was only partially able to perform her normal life tasks. I raised kids one way, she another. When we worked together, things came out well. When I had to take over while she was down, it was tough for me to give the reins back once she felt better again.
When we were off alone, the problems were no longer issues. We talked together, made good joint decisions, and then I tried to leave the execution for her once we got back.
This was harder for me than I expected. I loved the kids like my own and tried to raise them in ways that were similar to how the first four had been raised. But Lesa was stronger in patience, and I had a lot to learn. It got better over the years, but I didn't always do the best between the stresses that permeated the home. That is part of the reason we liked to get away: we could leave the stresses behind and rekindle the reasons we fell in love in the first place.
We went to art museums, plays, arboretums and gardens, parks, and new houses. We loved going to new houses. Usually, we were just collecting ideas, but every now and then we'd find a house we really liked. These were generally the ones we'd never be able to afford.
At home, Lesa was keeping simplicity at the top of our goals. We both hated my three-hour daily commute, all to deal with a business owner I could not trust or respect. He often treated his clients better than his employees, and yet was so hypocritically bent in his exposition of the company's virtues of honesty and integrity. Every day was stressful, even though the people I spent time with in the office were some of the best friends I've ever made.
To help in our quest for simplicity, we decided to try keeping Lesa at home, job-free, on a permanent basis. It was a hard decision. It meant moving to a less expensive house and living off one salary. It was a hard stretch, with the five kids at home and paying alimony and child support (of one sort or another).
When Lesa was married previously, she had asked me for advice about taking a job outside the home. I told her that at the point she was in her life, it might be a good thing for her. It would give her the ability to use the things she had learned in college and the chance to shine in her career. And, as it turned out, it was the perfect opportunity to help support the family when her husband lost his job.
She worked a few other places in the years we were married, all in the same field, but I think that first job was her favorite. Now, after all the build up of enjoyment from actually using her master's degree knowledge in the field, she finally had to back off. It wasn’t just as a matter of simplicity, as it turned out.
As she continued through the chemo rounds, she often had something known as "chemo-brain," a nasty side effect that is especially difficult for intellectuals to handle. I imagine it is something like the early stages of Alzheimer’s, where memory and thought patterns are harder and harder to retain. For Lesa, a book editor, former college English teacher, and mother of five, married to a computer software designer, losing the ability to think clearly and maintain all her memories all the time was brutal.
With no raises or bonuses at my job, Lesa unemployed, and benefits costing hundreds more each month, our choice was difficult. But, once we made it, we knew it was the right thing to do. Six months before the cancer hit, Lesa bought an old farm, with a house built in the early 1800s. It had been renovated by the previous owners, and was a great place to raise a family— almost two acres; an in-ground pool; a two-story barn; landscaping; a huge deck; lots of big, old trees and shade. Lesa called it her dream house when she first noticed that it was listed.
It was a lot more than the house Lesa had been living in after her divorce. And, in hindsight, we often agreed that we really should have stayed in the first place. But being the guy that I am, trying to please Lesa was important. I told her we could buy it as long as we could afford it. At the time, with two incomes, that seemed feasible. Then the Great Simplifier hit about six months later, changing everything.
Cancer has an amazing talent at helping you to simplify your life, narrowing things to what is most important. I don't suppose for a minute that when she asked for simplicity in her life, she meant it in that way. But I guess you always need to be careful what you are asking for. The Lord does answer, but oftentimes it is in ways that are different and more challenging than one might expect.
We felt this when we waited for my divorce to be finalized, watching the ways that our patience was tested, strengthened, and tested some more. We learned even more about patience in the five years we dealt with the cancer. What doesn't kill you makes you stronger, as they say. Sometimes, even the thing that kills you makes you stronger.
Lesa bought her dream house in the fall of 2004. By the fall of 2006, we had moved to a new, smaller house, helping not only with the monthly payment, but with the upkeep and maintenance as well. It was a good fit for us. We knew instinctively where things should go, and all our stuff seemed to fit. We had lots of good remodeling ideas that would have to wait. And the postage stamp lawn needed much less care.
The cancer was always with us, even in the seemingly quiet times. In the summer of 2006 there was a respite, and we took the opportunity to travel with the family. On our anniversary, June 10, 2006, we were sealed in the Washington, D.C., temple of our churchi. My brother Matt, his wife April, and Lesa's dad Larry, were there to celebrate with us.
The next day, our family and my brother's took a vacation, visiting various LDS historical sites in Pennsylvania, and then up to Niagara Falls. Finally, we went to see my oldest son Louis play a recital with his trombone quartet at a church near Pittsburgh. It was a good trip. Lesa had hair— short, but at least it looked like a short haircut, and not like it was just growing back. She was happy with that!
Lesa loved her hair. When she lost it the first time, she cried. I used to call it her rock star look; it was so long and full and colorful. She liked to have it colored every so often; starting with her natural brown, she'd add two or three colors of highlights, mostly in a reddish hue. She wasn't a vain girl at all, but she did like to have fun with her hair.
The summer went well. After the trip with my brother's family, Lesa and I took the kids to Wisconsin; Grandma Smart (my mom's mom) finally got to meet Lesa and her kids. As with everyone I took to Montello, Wisconsin, Lesa and the kids fell in love with the place. On the way back, we made what had become a traditional stop at the Indiana Dunes. It was a good summer.
By the time we returned, the cancer had kicked up a bit, and we had to head back to chemo. This round wasn't as bad. Mostly Lesa felt tired, as if she had a cold. So we were able to live life in normal ways, for the most part. Other chemos followed, as did other trips. Some of the chemo regimens were mostly felt as the cold-or-flu-sore-achy-tired feeling. This usually started the second day after the treatment. The first day was often the best, since Lesa, often plagued by dehydration, received lots of fluids during the chemo. Her lack of fluids was so pronounced that we had to take her to the emergency room on numerous occasions. In most cases, all that she really needed was a couple bags of fluids through the IV.
Photo 2 - Lesa, six months before the cancer came
One of the worst chemo combinations made her “itch and burn,” due to something called hand-and-foot disease. Unfortunately, the itch was from the inside, so there was really nothing that could be done to relieve it. Many times she would choose to get into a cold bath—one of the few things that would help. Once she got out, the effect didn't last long. Plus, sitting in the cold water was never much fun. Once she was out of the water, dried and warming up in bed, the itching would start up again.
We had several other trips of note. Our official honeymoon was to Seattle, over one of the better Christmas breaks. It was a wonderful week. We stayed on the waterfront and walked up and down the coast almost every day. We often walked to Pike's Place Market to eat breakfast, watch the flying fish, and check out the fresh fruits and veggies.
One day we got a pomelo, a large fruit that looks like a grapefruit, but it’s a bit sweeter. We had never tried it, and enjoyed the new taste. We went to a fun sushi restaurant one night. The sushi was placed on small boats that floated around the room in a narrow waterway. You had to pick the items you wanted and stack your plates as you finished. The plates were color-coded for the cost, so they could simply add them up at the end of your meal.
We also ate on the wharf one night, a huge meal served on craft paper at your table. It included crab, shrimp, potatoes, corn on the cob, and more.
The weather was nearly perfect, with almost no rain—a strange occurrence for Seattle in late December. We even saw Mt. Rainier several days, an amazing feat, especially in the winter.
We took another summer trip to Wisconsin and later took a huge summer trip to visit my relatives in the South. This trip went from Pennsylvania to the Mississippi gulf coast to Florida (near Orlando, and then up through St. Augustine), and back home.
My youngest daughter Leah got to make these trips with us. I know it was sometimes hard for her, but she was a great friend to us both, and we appreciated her along the way very much (we also loved her dearly, as you might imagine).
Lesa loved being with the youth from church. We took a weekend trip to Nauvoo, Illinois, to visit the first LDS temple there. It was a lot of fun; we played the part of "parents" for a carload of youth and greatly enjoyed the interactions with them on the long drive there and back.
Lesa also got to go to Girl's Camp for several years, a week-long outing that does for the young women what Scout camp promises for the young men. She was disappointed when she had to stop going.
Of course, we still had our weekends away, when Lesa was able; finding new places was always a joy. Once we found a restaurant with one of their buffets totally consisting of seven kinds of shrimp. We found several farmers’ market stores, where we liked to stock up on cheeses, fresh vegetables, and fruit.
We also found one of Lesa's favorite stores, hidden away in a small town on a quiet street. It was a fabric store, but it was one that went far beyond what you would normally find in the big chain stores. All the walls were lined with quilts and rolls of cloth. Baskets covered the floors, filled with buttons and other sewing knickknacks. There was so much cloth that it was very hard to move around. I'm not sure how anyone could find a specific thing, but everyone there seemed happy. Best of all, Lesa was extremely happy, moving from one cloth bolt to another, one bin to another basket, and off to look at a pretty quilt on the wall. She already had a two-door, metal cabinet, and several plastic totes full of fabric and sewing material, so there was never really a need for anything new. It was just a fun activity for her.
Upstairs were more quilts, displayed proudly on the walls, as if in a museum. The place was amazing and compact, even though it was filled to the brim with ideas and hopes.
We travelled a lot, but not always very far. It always depended on how Lesa felt. When she got the chance to pick an inn for one of our weekend trips (usually I made the arrangements), she found a nice, big log cabin in the woods.
We once stayed at an inn where we were allowed to go to an Amish family's home for dinner. It was delightful—almost twenty people around the dinner table! The mother cooked, and the kids helped to serve. Afterward, we were treated to a tour of the yard and barn. It was another unique weekend.
On November 1, 2008, we took what would be our last trip to the LDS temple in Washington, D.C. Lesa's hair wasn't as long as it had been before the cancer, but it was longer than it had been ever since. Her smile was radiant. The sun was shining, and we were with a group of friends from church.
That was the last big trip we took. I don't always remember the sequence of events through 2009 and 2010, but it was a tough eighteen months. To help cover the time period accurately, I am inserting a partial transcript of the CarePages I wrote during the time, along with a few journal entries.
The CarePage updates were I placed on a website called CarePages.com. The site is a free service that enables people to notify their friends and families of the status and concerns of those moving through medical processes. We had over 100 people sign up for updates on Lesa's health. It became a nice way to pass on information without the need for dozens of phone calls—a great comfort for me when our time together was becoming increasingly more valuable.
Hospital Visits Last Forever
After our wonderful day on November 1st, we ended up at the hospital the very next day. This chapter was written in a steno notebook while we waited in the ER. This was, in essence, the beginning of the last push for Lesa, although at the time we still held a lot of hope.
Around 11:30 this morning, we went to York Hospital. We nearly turned around and left – it was almost 1:30 before Lesa got a room, and the treatment we saw of the other waiting patients was cool, at the least.
Naturally, the doctor (CR) comes in when the darvacet and ibuprophen finally kick in, and wonders why she looks so un-pained. I tell him to wait an hour, and a few minutes after he leaves, true to form, she starts to hurt again.
So we almost walked out. They are doing a bang-up business here, but not a lot of time for patients. A male nurse brought a lady out in a wheelchair, and told her she could get help from the desk when her son brought the car to the door.
I am so tired. I listen to the various sounds and beeps of the equipment in the other rooms. The machine in here with us tries to take Lesa’s blood pressure every ten to fifteen minutes, even though her arm is not in the cuff.
A nurse came in when we needed help getting the bed to lay back. We told her Lesa had a urine sample to donate, and she said she’d go get the label for it. Several rounds of unsuccessful blood pressure checks later, she finally comes back to draw blood, and tells us the urine can wait here in the room with us because the doctor hasn’t ordered the test yet.
At 2:30, two more nurses come in. One hooks up the IV, while the other gives Lesa a quart of “contrast with lemonade” to drink before her belly CT, scheduled for 4:30. Lesa is hurting, but holding up well in her normal fashion.
3:20. The Morphine has spread its relaxing effects on Lesa’s body. They check her vitals, she goes potty, and decides to try for a nap. I sit in the corner, writing with a pen that’s a cross between orange and peach. Weird color.
Lesa lies back on the bed, raised now to an almost sitting position, and reads. And wants to discuss what she is reading. “What if I didn’t have cancer all this time, but had endometriosis.”
Her face is flush, pale with pink cheeks from the pain killer. Leah’s claddaugh ring on her right hand. Tiny earrings. IV now connected to the back of her left hand, her fancy hospital ID bracelet hanging out below on her wrist.
Leah says things are going okay with the children at home. No one else will answer their phones.
I drink water from a soda bottle, filled and refilled at the water fountain. No flavor, but it helps to relieve my parched mouth. My sinus meds are now wearing off, and my headache and sinus pressure return.
Lesa continues to study the medical literature I’ve printed for her, reading about adhesions and endometriosis. Her brows furrow, she rubs her forehead with fingertips, looking more and more sleepy.
This room is about 10 by 14, and has a private bathroom. Pure luxury for an ER ward, where we are usually just put behind a curtain. Today is busy here, and many patients are even in the halls, without curtains. The nurse tells us Sundays are the busiest days, and we see a lot of people just here, it seems, to throw up.
A doctor comes in to verify the work of the earlier resident. She examines Lesa’s belly and quickly finds the sore spots. She asks if Dr. R had done a “bi-manual” exam. Although he had mentioned it, we are still waiting. Off she goes to check on status. The room is again quiet. Lesa reads a little, then heads to the bathroom. The quart of lemonade is starting to work its way through!
Lesa is reading Odd Hours, the fourth Odd Thomas novel by Dean Koontz. The doctor mentions that there are three other rooms in the ER where people are reading Dean Koontz today.
4:25. We hear the announcement, “27 to CAT Scan.” That is our room. Finally! But no one opens the door. Lesa reads. I write. We wait.
5:45. We finally hear another announcement, and the nurse arrives for Lesa. By now, of course, she’s an hour late for her morphine hit. A few minutes waiting for the bliss to kick in, and they leave. I run Lesa’s bright purse out to the van, search for a pen with a more manly color (I finally found blue), and then go to the Café for a quick sub and soda.
A few minutes later, back in the room, Lesa says the results will take 45 minutes or an hour.
Lesa reads, I write. We wait.
We’ve had a lot of visits to the hospital in the last three and a half years. Memorial Hospital has become more of a favorite, even though I used to think York was better. Memorial used to take an extremely long time. Now they are quick to help relieve the pain, but don’t seem to do much about the problem.
York, on the other hand, took forever today, but at least they did a CAT scan with contrast, and have mostly kept up with the pain. Both doctors have given the impression that they are concerned, that Lesa is an important patient. So while we are here a lot longer, we might actually go home with more, and new, information.
I try to doze in the corner as we wait. The plastic chair, with artificial padding, offers very little comfort. Eventually, sheer exhaustion wins over creature comforts, and I rest a little.
For Lesa, the morphine doesn’t seem to be lasting as long, or the pain is increasing. Still waiting for results at 7 p.m., Lesa is no longer reading, but lying back on the bed and gently massaging her belly. She thinks the dye that went in through the IV is causing some contractions. We both seem to remember this from the last time. Meanwhile, she is quiet, but flashes of pain cross her face more and more frequently.
The doctor comes in with more news – the CAT scan is clear. So the next step is an ultrasound. And some more pain meds. At least they continue to look, and don’t give the typical “take this and call your doctor tomorrow.” Even with the length of time we’re here, it’s a blessing to know they are at least trying.