Earl's Journey

Happy? Anniversary

2009-08-17T14:06:00.000-05:00

I can't believe it has been 35 years since my brother walked me down that short aisle at the Hobart United Methodist Church. Earl was standing there in his white tux with the bowtie, sweat just about dripping from his nose - no A/C on that hot August day. We were fortunate the Italian Benevolent Society Hall (now a Mexican restaurant) was new and air-conditioned. The catering (from Mauer's in Hobart) was your regular CBS (chicken, beef & sausage), but was at least a 9 on a scale of 10 and only $2.95 a plate. That also included sides, salads and the table coverings. We had to cover the tables ourselves (in our gowns & tuxes!) but we saved money that way. Of course, that was when a couple came with their 3 or 4 kids and gave you $10.00. I guess everything is relative. Our "honeymoon suite" at the Holiday Inn (now the Radisson Hotel on I-65 & Rt. 30) was a regular guest room. We didn't go to Hawaii, Europe or even the Bahamas. We went to St. Louis, MO. The gasoline shortage had caused us to put a locking gas cap on our new Ford van that we drove down I-57. When we realized we had forgotten the key to the gas cap, we had to pry off the locking cap and replace with the original cap that we had kept in the glove box. We had no GPS or cell phone; we had to get Traveler's cheques instead of using a debit card. We had made our reservation by calling the Howard Johnson directly--no Internet-only rate or Hotels.com. As I recall, we didn't even have a credit card and had to pay for the room (I'm sure it was less than $29.00!) when we arrived. I called my mom on a pay phone (don't remember if I called "collect"!) to let her know we were safe. We didn't like staying at the "chain" hotels and went looking the next day for a "Mom & Pop" motel. We found a cute one not far from the Ho-Jo. It was quaint, very clean, and oozed of 1950's charm. It was also $14.00 a night. (and yes, there was a private bathroom and clean linens everyday.) We had a fabulous dinner on the Robert E. Lee, a former riverboat, now a permanently-docked restaurant. I remember having Shrimp Cocktail and Surf & Turf. Earl had some kind of beef and Crab. He also had a Shrimp Cocktail and a couple bites of my lobster. I know we both had a fancy mixed drink and I'm sure the bill was no more than $40 or $50. Early the next morning, I awoke to the sounds of Earl barfing in the toilet. Since he had not quite made it for the first heave, my first wifely duty was cleaning the bathroom floor at 2:30 in the morning. We spent a couple days at Six Flags Over St. Louis and also saw the Arch from the ground, but it was too busy to go up into it and I, being afraid of heights, probably was being a chicken. It may have been the first (but not the last) time that my husband missed out because of my hang-ups.
I'm sure much has changed since 1974: the church has updated their cooling system, you can't even rent a hotel room on the phone without a credit card and $14.00 might get you a pay-by-the hour room in which you wouldn't want to fall asleep, let alone take a shower. I no longer wear a size 12 or single-vision glasses. Leaving home without my cell phone causes a slight panic. Paying bills & viewing voice-mail online or the ability to find virtually anything on the Internet is probably the biggest change since 1974, besides postage: first class mail in 1974 for our wedding invitations and responses was 10 cents.
But like the $10.00 wedding gift, everything is relative. And it's amazing how fast 35 years can pass........

New Every Two

2007-09-17T19:52:00.000-05:00

My cell phone uses the above tag line to advise customers that they can get a new cell phone, free of charge, every two years if they stay on the plan. Last February, Katie & I took the bait and "re-upped" for another 2 years. It hardly seems like it had been that long since Earl & I went into the phone store and purchased a phone for his Dad & Mom and added a line to our plan. I still remember him saying that his parents, although very independent, were getting up in years and he felt it was up to him, as the only son, to take care of them in any way he could. We had been going to their house at least once a week or so, and were trying to help with chores and housekeeping. Little did we know he only had about 7 months to live at that point. I wonder if, subconciously, the mind knows when the body is starting to die? Not that he had previously ignored his parents; quite the opposite, but he felt more responsible for them in the several months before his illness was diagnosed. Other incidents that happened in the year before his death also seemed to happen for a reason. I look back now and marvel at events that seemed so routine, yet each one taught me something I needed to know for the as-yet-unknown future on my own.

The past two years have been "new" for me and the kids. A friend of mine asked me several months ago how I was doing--I told her OK - it was "different". She commented, "the new normal?" That struck me as the best way to describe it. When I think of "normal" routines before May of 2005, and "normal" routines now, the differences are huge. "Normal" now means filling the coffee pot at night for only my use; not making Earl's lunch at night; checking the basement sump pump and water softener; resetting the light timers; sleeping only with the cat.......etc.

If the first two years are supposed to be the most difficult, I should be relieved, but I can't see myself missing him less. The smallest of "triggers" can bring on a flood of grief and tears. Will this still be "normal" after another two years? Or will unknown challenges and new routines bring yet another "new every two"?

Another birthday - another year

2006-10-31T06:15:00.000-06:00

Dear Narf,
Has it really been over a year? In one way, it seems so raw, so fresh. In other ways, I struggle to recall details of our lives--nuances known only to you and I. You would always tease me when I had a birthday & tell me I was getting old. My retort was that "you'll always be older than I am" isn't true anymore, is it?
So many new things to share with you--have you seen them happening? I finally had my surgery in August that the doctor said I should have last year; the statue of the birdbath that I had bought for your grave the month after you died was stolen from the cemetery sometime after my surgery when I couldn't come to visit you; Katie passed her driver's test the first time out & got her license a year later than her friends; Jonathan moved out for a while this summer--a "bachelor pad" with Tim & Shawn, but he is back home, trying to save some money and has applied to Purdue again after two years spent at V. U. His new band is supposed to go "on tour" in December when the other members are out on Christmas break also. I am thinking of trading in the Odyssey for something smaller; I know it was the car you wanted us to have, but our lives have changed so much - I just don't need it, Narf - it is too big in the garage. Since both kids drive and don't need "Mom's Taxi", 90% of the time I am driving that big van by myself. We were going to take it on vacations or camping; use it for the Doghouse concessions--(remember all those nights after work or Sundays we spent at Sam's Club and loaded up [sometimes] two cars with candy, water, nacho cheese and popcorn? I think the Band Parents have almost everything delivered now - I'm not sure, since between last year with your illness, and this year with my surgery, I have been unable to help out.) Katie & I took the van on a short 3 day "vacation" to Michigan; I don't think we would take some long road trip to Mount Rushmore, as you and I had planned. It's just not the same.
I am waiting on the computer layout from the monument company for the stone. There were so many things to consider - so many things I want on our stone--your monument. You know how I am when confronted with too many choices. You would always say "just pick one!" Well, I hope you like the design, color, shape, etc. of the monument. We are hoping to have it set before winter. Before another cold winter without you.
Happy Eternal 52, Narf. I love you and miss you.
Narfie

In the Driver's Seat

2006-05-10T14:55:00.000-05:00

Many things have come to mind over the past several months that I felt I wanted to share, but somehow time constraints had me always doing something else. After Earl's birthday, then came the holidays and although it was very hard, I felt it was something I had to do. Even though Jonathan & Katie are not "kids" anymore, I knew that the comfort of our Christmas routine was important for them. January and February passed as I continued to sort out medical bills, insurance policies, changed health insurance, filed taxes, refiled tax exemption after refinancing, went to a grief support group at the VNA, and many other things I never thought I would have to do, let alone do them by myself. At times it was overwhelming and I just had to take a step back and breathe.
I had a small family party for Jonathan's birthday in March, went to my sister-in-law's house for Easter and just had another family get-together for Katie's birthday, which was yesterday. I can hardly believe she is 17 years old; at her Sweet Sixteen party last year, we had no idea of the events to come. Earl had told me several times that day how everything tasted "so good", and if he was having problems, he gave absolutely no indication to anyone. One of the photos I shot that day is Earl & his Dad on our deck. I have to admit that I purposely caught that moment because I figured that Dad was almost 82 years old and--well, you just never know! How true that statement became, but with a Hitchcock twist.

Most kids, by the time they are 16 either already have their driver's license, or are working on it, but of course, that was the farthest thing from my mind last summer. After recent discussions with Katie (and a failed test at the BMV for a regular learner's permit) I decided to have her do the Driver's Training course at Excel Driving Instruction. She is about half-way finished and I am glad I decided on the investment. I should recoup the cost in about 2 years on my auto insurance. Jon also took the Excel course, and it made him an excellent driver, if you don't count his three speeding tickets and getting hit in the rear. ;-} At least we collected from the other party on that one.........

Earl used to drive when we went on vacation and I was the navigator. I had never driven to Chicago before he became sick--it just was not necessary, since he was used to driving up to the Conservatory when he was going to school. We would share kid chauffeuring duties, whether to flute lessons, rehearsals, friend's houses, or whatever. Now, whenever Katie & I go somewhere, I usually let Katie drive to get more experience. When I drive alone, I seem to drive more carefully than I used to. I am the only one they have now.

Sometimes it's lonely in the Driver's Seat.

Happy Birthday, Narf

2005-10-31T00:42:00.000-06:00

Instead of putting a black & white Memorial tribute in the newspapers for people who don't even know Earl, I thought I would share some pictures with everyone who knew him and shared in his Journey. The picture below left was taken just before his cousin, Jeff, took him flying on August 8, 2005, the day before he had his PDT injection. He was not able to swallow at this point, but liked to "swish" with cold water. The top picture on the right was taken at Beverly's house on May 30, 2005, the day before we found out his diagnosis. Art had grilled steaks that day and Earl was determined to eat one. It took him close to an hour, but he did it! Happy Birthday, Narf. I love you.
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I used to love Halloween. Back in the early and mid 60’s, Halloween was not the structured commercial giant that it is today. Like many other things, it had a special place in my heart from a more “simple” time. Decorations usually consisted of a grinning Jack-O-Lantern on the porch, and (at my house) the front picture window was covered with cardboard cut-outs of spooky houses, graveyards, and pumpkins. Costumes were usually made out of old clothes, bed sheets, or whatever else was available. I think I was a Hobo, complete with a neatly-tied bundle of belongings on a stick over my shoulder, for 4 years in a row. Not real original, but it served the purpose. Sometimes a kid was lucky enough to have a home-sewn costume (I had a witch costume that my mom had made for me) but store-bought costumes were not nearly as elaborate as those that can be widely found today. We would put on some over-the-top make-up, grab a pillow case and run around the neighborhood for hours, raking in the loot. Trick-or-Treat times were not set by the municipalities; as soon as we were ready after school, we started out and didn’t come home for several hours. Halloween parties were filled with activities, such as bobbing for apples, or going blind-fold through the “mad doctor’s laboratory” wherein our hands touched “eyeballs” (hard boiled eggs) or “brains” (cold spaghetti) and were the social event of the season. Then there was the candy! Other than the occasional apple (which immediately was set aside) people were not concerned with “low-fat” or “sugar-free” on this night. My sister and I would have a candy stash that fed our sweet tooth until Christmas. The sadness of growing too old for the fun of Halloween was eventually replaced by the anticipation of sharing in the fun with my own children. When I met Earl and found out that his birthday was on Halloween, I called him my Fuzzy Punkin, a loving reference to his curly hair. It was usually his choice if he wanted to be home that night to give out treats, or go out for his birthday. We reasoned that we shouldn’t be made to stay home when we had no children to share in the fun.

All that changed when Jonathan was born. My longing to create Halloween memories for our children seemed to push Earl’s birthday farther away. Oh we would always have a celebration, just usually not on his birthday. I tried to make his day special, but unless the day fell on a weekend, time constraints in the evening meant getting the kids dressed up while trying to grab a bite of dinner, decide who wants to go make the rounds and who wants to stay home & give out treats and before you knew it, the day was over. Earl rarely commented on the lack of attention; it was just his selfless way.

How I wish I could wake up early tomorrow morning, roll over and kiss my husband and wish him a Happy Birthday. I would make him his favorite breakfast and tell him that he can do whatever he wants to do today, that both of us are taking the day off. And that later on, we would have a special party planned just for him with all his family. I would have made him a huge birthday cake with plenty of ice cream on the side, and I would have bought him a special gift, something to do with his beloved birds or music. But all I could do this year is have Mom & Dad, Bev, Artie & the kids over for chop suey, one of Earl’s favorite dinners.

Somehow, it wasn’t the same.

I wish more than anything that I could put up a sign on the porch tomorrow night that reads: “Private Birthday Party in progress! Earl A. Reinert, III is 53 today! Please take some candy from the bucket in celebration of Earl’s birthday!”

I hate Halloween this year.

The End of the Journey

2005-09-21T15:05:00.000-05:00

When I started this blog, I fully believed that the Journey would end happily.
Happiness, like everything, is subjective; however, it is comforting to know that Earl is now with Jesus.

Again, my deepest thanks and gratitude to everyone who wrote, sent cards, donated to the fund, prayed, called, visited--I can never repay any of you, but I will try to thank you more properly in the days ahead.

Here is the obit I wrote for the papers. I will probably be writing a few more posts; there are more stories I would like to share about Earl, my Narf.
Love and Peace,
Gayle

Earl A. Reinert, III, age 52, of Valparaiso, passed away Sunday, September 18, 2005. He is survived by his wife, Gayle (nee Marciniak) of 31 years, son Jonathan, daughter Katherine, parents, Earl A. & Lucille (Brown) Reinert, Jr. of Hobart, IN and sister Beverly (Arthur) Craig of Michigan City, IN, many other relatives and friends. Preceded in death by his sister, Loretta.

Earl was employed by Aramark Uniform Services and had previously worked for Jay’s Potato Chips and Western-Southern Life Ins. His passion was music, particularly guitar, and had taught privately for over 35 years. He enjoyed camping, bird watching and spending time with his family and friends. A member of the First United Methodist Church of Valparaiso, he belonged to the Men’s Club and often shared his musical talents to the glory of God.

Visitation will be Wednesday, September 21, from 4 to 8 pm at Moeller Funeral Home, 104 Roosevelt Road, Valparaiso, IN. Funeral services will be held on Thursday, September 22, 2005 at 11:00 am at the First United Methodist Church, 103 N. Franklin St., Valparaiso, IN, with burial following at Angelcrest Cemetery. In lieu of flowers, memorials may be made to VNA of Porter County or FUMC of Valparaiso. For more information on Earl’s life and courageous battle with cancer, please go to: http://reinertzoo.blogspot.com.

For the Record

2005-09-09T15:35:00.000-05:00

Earl Archibald Reinert, III was born on October 31, 1952 the third child of Earl A. Reinert, Jr. and Lucille M. (Brown) Reinert. His two older sisters, Loretta Marie and Beverly Jean doted on their baby brother. His first struggle was living, as he was born premature and quite small—a “pound of hamburger” his mom used to say. Compared to today’s standards, modern medicine was pretty antiquated in 1952, but “Little Earl” as he came to be known, was a fighter. At the age of two, his appendix burst, leaving him with even more scars. Little Earl loved to fish and camp-out with his Grandpa Brown. In the mornings, Grandpa would ask Earl how he wanted his eggs, and while Earl was describing fried eggs, sunny-side up, Grandpa would laugh all the while scrambling up a mess of eggs for the two of them. Mischief loved Little Earl, once causing him to smear Mom’s kitchen cupboards with Bosco. His fascination with the cartoon character, the Pink Panther, compelled him to paint the neighbor’s cat pink. When she escaped and ran into traffic on Ridge Road, she was killed. During his rebellious Jr. High school days, he would forgo the balanced school lunch and often go to Abbott’s Restaurant where he would indulge in a plate of French fries with ketchup. After all, how would his mom & dad know? That is, until, Dad walked into Abbott’s one day and asked his son, “How’s those French fries, boy?” Ahh, but that was all before he discovered Music.

Earl was fascinated watching his Uncle Jr. play steel guitar at family parties and would not stop pestering his parents until, at the age of 10, he started taking guitar lessons at the Hobart Harmony House. Two years later, his first band, “Me and the Other Guys”, was playing for private parties and school dances. The other members of the band were Harry Kenifel, Dan Culver and Brent Tarnow. They usually practiced at Brent’s house, since he was the drummer. The band was together about two years.

Earl’s first “real” job, was working at Main Drugs in Hobart, at the age of 14, doing general clean-up and errands. When he was 16, he got a job at the Rocket Drive-in, first as a dishwasher, later progressing to a cook. All this time, he continued lessons at H. H. H. Unlike many kids who picked up the guitar in the 60’s, Earl learned to read music, studying for six years with Wayne Gardner. He was well known and respected in the area and picked up jobs and made connections. One of those connections, Haldean Sturtridge, a drummer, turned into a life-long friend, even if he did take under-age Earl into lounges to play until the wee hours of the morning. It was also during this time that his beloved sister Loretta and his Grampa Brown both passed away.

Earl started teaching guitar at the age of 16, both at Hobart Harmony House and Glen Park Music in Gary. It was at Glen Park Music that he met another life-long friend, keyboardist Jim Jasper, and together with Keith Leach, they formed “The Jim Jasper Trio”. When they decided they needed a bass player, they found John Springman, and changed the name of the group to “The Swing Machine”. When John decided to leave the band in late 1973, the manager of Glen Park Music, “Mrs. M.”, suggested to Earl that her daughter would be perfect for John’s replacement, since she also sang and played the bass guitar. Gayle, who was tired of playing in lounges from 10 pm until 2 am, 3 or 4 days a week since the Powder Puffs broke up, felt this would be a good move and it meant a fresh start. It was then up to Earl to teach Gayle that there was more to music than rock & roll, if you wanted to play weddings, reunions, and banquets and make some decent money. The crash course to learn 40 or 50 songs in a couple weeks meant that Earl and Gayle spent many hours together, soon realizing that not only did they have so much in common, but they were attracted to each other.

But wait! WHAT ABOUT THE – THE – THE HEIGHT THING!?! Aw, Shucks! It’s only eight inches!! She would wear flat shoes – he could get those lifts for his shoes, you know – then the difference might be only FIVE inches!!

Isn’t it funny how we often let traditions dictate our lives? The difference in a couple’s heights is never an issue, when the man is the taller one, but here was Gayle at 5’ 10 ½ inches, and Earl at 5’ 2 ½ !
They decided it did not matter, and after two or three dates, they found themselves asking each other, “Why are those people staring at us?” “Oh, yeah – I remember now!”

The Swing Machine was booked pretty solid into the summer of 1974, and Earl & Gayle picked their wedding date of August 17 from the few open Saturdays after she was to turn 21 in July. The wedding, at the First United Methodist Church in Hobart, was beautiful, with madrigals sung by the Northwest Indiana Chorale, of which Gayle was a member, directed by Alfred J. Fissinger. The reception, held at the newly-built Italian-American Benevolent Hall, was like no other, since the happy couple, clad in their wedding clothes, got onstage and played several songs for their family and friends. After a short honeymoon in romantic St. Louis, Missouri, the happy couple set up housekeeping in a converted garage on Independence Street in Merrillville, Indiana, paying a monthly rent of $130.00.

Earl continued his studies at the American Conservatory of Music in Chicago and could often be found carrying his string bass to Orchestra Hall on Michigan Avenue. He fell only a few credits short of his degree when he decided to drop his studies at Indiana University, N. W. when he added a third job (Kaplan’s Shoes) to his workload to try and save for a house.

Now that Gayle was no longer living with her Mom in Glen Park, Mom said the house was too big, and it was sold. The plan was to find a “mother-in-law” house, which would provide mom with a daughter & son-in-law nearby, but still allow the newly-weds their privacy. The perfect house was found on E. 78th Place in the (then) Merrillville subdivision of Green Acres. Mom paid for her third of the house as the down payment; Earl and Gayle made all the payments. All three of them worked to improve the house, enabling them to sell the house 2½ years later and return Mom’s money with interest.

After leaving HHH and Glen Park Music, Earl started giving guitar and bass lessons from the house in Green Acres, left Kaplan’s Shoes and became a life insurance agent for Western-Southern Life Ins. Co. Mom remarried in 1977 and eventually moved to Arizona. Earl and Gayle built a house in Hebron where they lived for 14 years. In 1991, they decided to move to Valparaiso.

“The Swing Machine” continued for several years, while Earl and Gayle also continued working their “regular” jobs. For recreation, they would go to movies, out to eat, or an occasional concert. Summer vacations were modest: renting a cabin on a lake in Michigan, Cedar Point in Ohio, or the very brief trip to New York for Jim Jasper’s marriage to Judy.

After the demise of “The Swing Machine”, their old friend Dean Sturtridge called Earl saying that he was playing drums with Tina Cosenza on cordovox and they needed a guitar player. Earl played several gigs with Tina and Dean, even getting Gayle in for a couple of jobs. When Tina decided to stop playing gigs and get married, Dean, Earl and Gayle started filling jobs as “Rainbow”. With the addition of Ray Grivetti on sax, clarinet and flute, the band played steadily until approximately 1995.

Meanwhile, friends and relatives all around them seemed to have no problem bringing little bundles of joy into the world, but the stork constantly flew over the Reinert house without stopping. In 1980, there was a glimmer of hope, but then came a devastating miscarriage. They decided to apply for adoption. After all, even though Roe v. Wade was the law of the land, there had to be a baby out there for them! After they were inspected, quizzed and relieved of the non-refundable $1,000 application fee, they were told to go home and not call the agency for five years. Five years.
F I V E Y E A R S.
Oh well; we’ll take it one month at a time. We know that God must have this all figured in His Master Plan.

To make a long story short, after scads of tests and two operations, Gayle found out on July 12, 1985 (her 32nd birthday) that she was again pregnant. Jonathan Earl Reinert was born on March 8, 1986 while his proud daddy grinned from ear to ear. The birth of Katherine Ardath Reinert on May 9, 1989 was just as special, since Earl was the first one to see her.

Around 1983, Earl decided to leave Western-Southern Life Ins. and take a job driving a route truck for Jay’s Potato Chips. He was able to be more active, as he had put on quite a few pounds during his days at W-S. Earl was a top salesman for Jay’s, mostly because his customers knew they could trust him, never feeling pressured. After 14 years at Jay’s, things started to “go south.” Between Jay’s middle management problems, salary cutbacks and cuts in commission, Earl was under tremendous stress, as his income had fallen sharply and Jay’s was pressuring its salespeople to visit their customers on Holidays, Saturdays and now Sundays. Earl was at very low time in his life, a time when his eternal optimism was almost non-existent. Of course, Gayle knew about the dip in income, since she was the one having to raid their savings every week just to pay the bills, but true to his nature, Earl kept the burden of the entire situation to himself for almost a year. One day, sitting in his Jay’s truck at one of his grocery stores, he was praying to God asking for His help and guidance. As if it was a sign from God, he suddenly heard Dean’s voice at the back of his truck. As they talked, Dean told Earl that Aramark, his employer, was looking to fill a position similar to Earl’s position at Jay’s, but the pay and benefits were much better, and he would have every Saturday and Sunday off. Earl applied for the job, gave his notice to Jay’s, worked through November 20 (Friday) for Jay’s, then started with Aramark on November 23 (Monday), 1998. For the next 6 ½ years, he was a stellar employee, with a good work record and was well thought of by his customers and co-workers. His last day of work was June 10, 2005, the Friday before his operation.

That brings us back to the beginning of this blog in June. There are many more memories, of course, but at least this much is written down. I felt I had to do this and tried to be as accurate as possible.

A man is measured in many ways, but I know when God calls him home, he will be the tallest in the line.

The Music of Our Lives

2005-09-05T08:36:00.000-05:00

Playing bass guitar in an all-girl band in the 60’s during the “golden age of top 40 radio”, was an amazing experience. I only wish I would have kept a diary of all the places, people, & events during the 5 ½ years that began when I was just 12 ½. I knew then that we were doing something special; I was just too young to realize how much those memories would fade after 40 years. At least the songs are still there, thanks to CD’s & “oldies” radio stations. 97.1, “the Drive”, (out of Chicago) is my favorite, as they play many of the “hard rock” songs that we, as girls, tried to replicate live, including the Beatles, Hendrix, Mountain and Who. I have always liked most kinds of music, however, and appreciate real talent and musicianship. Classical music is very calming and I often tune the TV to one of the classical stations (one of the only advantages to satellite TV over our previous cable) in the evening while napping, waiting to give Earl’s evening meds.

One of the radio programs I listen to regularly is a syndicated show called “The Music of Your Life”. Earl used to tease me and say it is an “old fogey station”. I’ll admit, once in a while it just gets too corny & I have to switch to something else, but they usually play a wide variety, from 40’s Big Band to 70’s classics, to new recordings. No, they don’t play Purple Haze or My Generation; they play Glenn Miller, Harry Connick, Jr., Etta James, the Carpenters and Frank Sinatra. Who would have guessed that a child of the 60’s would be listening to this type of music?
Just as I was too young to realize I should document my experiences with the Powder Puffs, I never truly appreciated the talent of Frank Sinatra. Since he was in his waning years as I was growing up, I really only knew of his “Rat Pack” days and that stupid duet with his daughter. Recently I heard again his rendition of One for My Baby. His voice was so pure; his timing absolutely impeccable. Many of his techniques were completely opposite those taught by voice coaches, but I think that was part of his appeal—he had that raw emotion and it all just worked.

Sunday, September 04, 2005 2:20 am
This last week has been hard. It’s hard for me to see Earl in a steady decline; hard for me to see his hands shaking when just a few months ago they went smoothly & swiftly up and down the fretboard of his guitar. I am not sure if the shaking is due to the cancer or the morphine; maybe it is a combination of both. Because he sometimes loses his balance, I have to walk with him if he goes the short distance through the kitchen, the hall and to the bathroom. He is still able to go upstairs a couple times a week to sit in the bathtub, but soon it will be all sponge baths, since the climb up the stairs and the bath itself is exhausting. Since Wednesday, the rate on his pump is up to 4 mg. per hour, plus he can push a “dose” button if he has a pain spike. The higher morphine rate has generally kept his pain under control, but he sleeps much more. Since the Hydrocodone are needed now only about every 6 hours, I am able to sleep more than two hours at a time. After giving Earl his sleeping pill and a Hydrocodone at 10:45 pm, I was pretty tired and was looking forward to a fairly good night’s sleep. I was as deep in sleep as I have ever been since May 30th, when at 1:15 this morning I was awakened by a beeping on the morphine pump. I bolted off the couch and checked the message on the pump screen: “volume is 0.0”. Great. I wondered how long before Earl would wake up in pain. Would it continue to pump air into his port? How do I stop the alarm? Should I give him another pain pill? After another minute or so, I was wide awake and thought more clearly. I called the after-hours number for the VNA and told the answering service I needed to speak to the nurse on call and why. Avonne called me back within 10 minutes and said she would be right over. She exchanged the bag that the morphine had been dispensing out of with a hard plastic cassette that had been delivered to us on Friday and then re-programmed the pump; Earl slept through the whole thing. She then took his blood pressure and got a response of “tired” when she asked him how he was feeling. We apologized to each other as she was leaving—she for not calculating correctly how long the previous bag was going to last, me for having to call her in the middle of the night. I tried to go back to sleep, but decided to get up and write this as I kept thinking of a young Frank Sinatra in his beautiful, sexy voice, singing, “it’s a quarter to three, there’s no one in the place…”

Monday, September 05, 2005 (Labor Day) 6:28 am
After Earl’s bath yesterday morning, he slept in our bed upstairs for about 40 minutes. He had become so winded just climbing the stairs that he had to sit several minutes before getting in the tub. I mentioned this to Debra and she thought he might be getting to the point of needing oxygen, so she arranged for the delivery yesterday afternoon. When my father-in-law needed oxygen last winter, I never dreamed that just a few months later, there would be a concentrator and a huge bullet-like tank in my family room.
I had to call the VNA after-hours number again yesterday evening when we discovered, by pure chance, that the line on his morphine pump was leaking. Since the morphine drip is so concentrated, the amount of fluid was minimal and would have gone undetected if it was just dripping on the carpet or the bed. The line, however, was hanging over Earl’s knee, and he felt the few drips and told me. The on-call nurse, who was Chinese, was very nice, and stayed through a couple cycles of the pump to make sure it was OK after she fixed it.

Later on, when I laid on the couch to catch a nap before it was time for Earl’s nighttime meds, I cried thinking of the many blessings we have been given, and I cried thinking of the rough days ahead. I thought of all our plans for the future, realizing they will never materialize. I cried for the families affected by the hurricane and prayed for their comfort. We never had the chance to visit New Orleans; we would have loved to absorb all of the fabulous music and atmosphere. Many of you know that music is what brought us together, and it has always been a major part of our life. In my own world, slowly losing my husband is earth-shattering, but to suddenly lose several family members or friends, plus all earthly things that you own—I cannot begin to imagine what those people have to endure. I pray daily for the survivors, the victims, and most of all, the emergency response teams, the policemen and firemen, the doctors, nurses, National Guard troops and everyone putting their own lives on the line for those affected. A special part of America is lost forever and I sincerely hope the city rises again.
Last night I also thanked God for neighbors, family and friends that have done so much, each in their own way, to help, comfort and uplift our family, as well as the compassionate strangers who are helping the victims of Hurricane Katrina.

It truly is people that compose the “Music of Our Lives.” Bravo!

Japanese beetles and greener grass

2005-08-26T07:50:00.000-05:00

The only reason, of course, for the stent procedure was so that Earl could eat. Period. He said he wanted to enjoy the time he has left and knew this was his only option. The doctor made it sound so easy, so successful. You all know the old saying, “The grass is always greener on the other side of the fence.”
Earl was still, however, thinking of having another chemo treatment; I had told him this would have to be his decision. I secretly thought the cons outweighed the pros, including having the stent dislodged during violent post-chemo vomiting, but kept my thoughts to myself. So much has happened since last Thursday; so many things have been clogging my brain – it has been unbelievably confusing and hectic. I will try to sort out and document our days.

Pain & Nausea Management
After returning home last Friday (August 19) from the stent procedure, Earl did not want to try eating (by mouth) and we were mostly just trying to manage the pain. With the Hydrocodone being needed about every three hours, not only were we not getting enough sleep, but he was at his daily maximum dose of Tylenol. We had already increased the Duragesic patch to 75 by cutting the backing on a 50 and exposing half of another patch. As of Friday, I am on the couch whenever I sleep.

On Saturday, Debra, our VNA nurse, came and suggested that Earl get on a morphine pump which would deliver a steady dose though a line in his port. Unfortunately, due to various circumstances, we were unable to get this hooked up until Wednesday, August 24. (more explained on this later). She also suggested a different nausea med, Phenergan (promethazine) and she inserted a Sub-Q button on his upper right arm after talking with Dr. DeJoan (he is Dr. Gupta’s associate, our family doctor that had performed the first scope test with the biopsy back in May). Debra pre-filled several small syringes for me, and I had to administer the Phenergan every six hours into a small, waxy plug at the end of a little line attached to the Sub-Q button, which was taped down. It took about 5 minutes to administer each dose, since I had to put just .1 cc in and then wait a minute, until it got up to .5 cc. I was so nervous the first time that I forgot to use the alcohol wipe on the plug, but Debra told me the next day that was OK.

Eating & Living
Last week, before the stent procedure, I had bought two pounds of coffee at Dunkin’ Donuts (1 pound of de-caf and 1 pound of regular beans) and told myself I would not grind it until he could drink it. On Saturday, Earl finally had a couple of swallows of coffee. I guess I was waiting for a reaction similar to the dog (what was his name?) in the old cartoon that practically made love to his dog bone, and then shot up into the air and floated down in ecstasy. But it was not like that. I don’t know if it is the drugs or the cancer, but his taste buds are apparently not what they were 2 or 3 weeks ago, and he never even smiled. Later on, he had some chicken broth with maybe 2 bites of soft pasta in it and a few spoonfuls of home-made tapioca pudding. When I suggested something else that he could eat, he became slightly agitated and said he was just “easing” into this (eating by mouth) and to please let him do it at his own pace. The stent is only about the size of an average index finger, and of course, does not stretch like a normal esophagus, so he is limited on what he can eat, but there are many things he could eat if he feels like it. Dr. Warren had sent his resident in before we left the hospital and said he could eat pasta, Sloppy Joe, puddings, fish, etc., probably not chicken, raw vegetables and not steak. He never told us that Earl would be so nauseated (whether from the cancer being pushed down by the stent, or IF there is cancer in his stomach or from the drugs, that he wouldn’t want to eat.

Sunday seemed to start off good, with Earl feeling better. We went on the shady front porch (it was a gorgeous day!) and I got out the clippers and gave him a hair-cut. He used to have such thick, wavy (& wiry) hair; I used to say his head on my lap felt like a Brillo pad. Since the chemo, it is much thinner and it seems to have much more gray than before the cancer. With him losing so much hair, at least now it is shorter and not as much a mess. I can’t kiss his head without coming back with my lips full of hair. After the hair-cut, I helped him with a bath and hair wash, and then made breakfast. For the entire day, he had about half of a soft poached egg, a few bites of mostaciolli, less than a quarter cup of applesauce and about a half cup of cream of tomato soup, with only one can of Two Cal. Monday was even less “regular” food by mouth, but at least he took in three cans of supplement; Tuesday, his nausea was back and he took nothing by mouth and less than 2 cans of supplement. By Wednesday, I received the Nutren 2.0 (500 calories) that I had ordered on the internet on Sunday when Earl told me that he thought the Nutren he received in the hospital digested better than the Two Cal. I wish I would have know about Nutren before; I thought I had been advised (by the VNA dietician) of the highest calorie supplement per ounce that was obtainable. Also, Nutren is made by Nestle’, which, to me, is more appetizing than Ross/Abbott Laboratories, who makes Two Cal. Also on Wednesday, Earl decided he wanted to try some Cream of Wheat and toast. One bite of Cream of Wheat seemed to go down fine, but apparently the baby-bite of toast did not go down well, so he decided not to eat any further Cream of Wheat, nor did he want to try anything else the rest of the day. As I write this on Thursday, he has not wanted to eat anything today (except supplement in Godzilla). It has only been 3 ½ weeks since we sat in Dr. Warren’s office and listened to him describe the PDT and I remember Earl’s eager anticipation of performing the simple act of eating.

I’m sorry if I have been writing in too much detail—I guess I need to keep it all straight in my head to justify the “main event” of the week.

The Decision

A very important development has also happened since returning home from Rush on Friday. Both Dr. DeJoan’s office and Debra had mentioned this to me before; I just didn’t think it was time, and I did not want to make the decision myself, especially since Earl had still been thinking of having more chemo.

On Saturday, Debra talked to Earl and me about going into the VNA Hospice program. She explained that there are many advantages but we could discontinue the program at any time if we wanted. The main goal of hospice is, of course, palliative and comfort measures and this meant that no further treatments (chemo or radiation) or tests (x-rays, CT scans, etc.) would be performed. I said that it would have to be up to Earl, and he said he would think about it. Monday was not a good day—at one point, I tried to get him up to eat something and he said to leave him alone, that he was trying to talk to God and he had not yet received an answer.
By late Monday afternoon, he said that he can tell when his body is starting to shut down; he had decided he did not want to do anymore chemo and that I should call Debra. Many factors went in to this decision; please don’t think that any of us took it lightly.

Debra came over with forms on Tuesday, August 23, for the admit. Earl will still be at home, and I will still be his primary caregiver; we will have an additional nurse (Avonne), and medicines and all supplies (including a different bed) will be delivered to us. I think the futile efforts on Saturday and Sunday in trying to call Aetna, the doctor’s office, and Walgreens Home Health Care to get the morphine pump delivered played a small part in the Decision, but I’m sure it is a combination of many things. I know that Earl was on a roller coaster of pain and just did not want to do it anymore. Debra came on Wednesday to “install” the morphine pump and remove the Sub-Q button, which by this time was causing pain to Earl’s right shoulder. Apparently, the Phenergan is not supposed to be administered Sub-Q and, as of Thursday night, his arm is still red and slightly sore. He is now on a different medicine for the nausea. We shall see if it works.

Wednesday evening is pretty much a blur—we discussed things that many couples do not get a chance to discuss before one of them is suddenly taken away, but my stomach is still in knots and I am cried-out. Thursday, Walgreens came to take the old bed; American Medical came & delivered the new one; Avonne, our certified hospice nurse came over, as well as the hospice social worker, Lu. Earl was exhausted and slept most of the afternoon and evening, giving Godzilla only 4 ounces and later drinking about 2 ounces of the Nutren.

Friday, August 26, 2005, 4:55 am
In a horrible way, a weight was lifted from my shoulders after The Decision. I know he will receive more personalized intensive care and will not have the strain of car trips, or doctor visits or procedures. If there was a 1% chance that he would be cured by any of those measures, I would encourage him all the way, but there is not. It hurts me so much to see him in pain, or vomiting up what was just put in his stomach 15 minutes earlier, or how much his general stamina and strength has diminished. If anyone reading this has had even a bad case of the flu for a week and you thought you were dying, multiply it 100 times for 3 months and ask yourself if you would not only want to continue being that sick, but to know any further measures to extend that illness would make you even sicker, would you do it? Especially if you knew you were not going to get any better? I doubt it.

Sometimes the neighbor’s green grass has grubs eating at the roots and the “greener grass on the other side” is not what you thought it would be.

We should know something soon

2005-08-19T14:45:00.000-05:00

Well, it is already after 12 noon and we are still waiting for results of the barium swallow test he took this morning; they had no openings for yesterday. A nurse told me last night that they have to make sure "nothing got punctured" - it "wouldn't be pretty" if (liquids) started "leaking into his lungs" (!) They took him down around 7am and he did not get back to his room until after 8:30. It really seemed to take a lot out of him, and was very tired and crabby when he returned to his room. He did not want to talk about it - he said he did not know how it went.
I helped him again with his tube feeding this morning - the hospital gave us Nutren 2.0, instead of the Two Cal - I wish I would have known about Nutren 2.0 six weeks ago - it has 25 more calories than the Two Cal. He also had to have a chest x-ray this morning - I'm glad they brought the machine to his room, instead of him going downstairs again.

I sincerely feel sorry for anyone who goes in to the hospital, or whatever, without an advocate, especially if they are totally unable to discuss matters with the nurses & other staff. Please don't think I am patting myself on the back; I constantly question our decisions and myself about all that has happened in the last three months. I just have to tell myself we did what we thought was right at the time. I simply find it puzzling that I have to constantly remind everyone why he is here, that he cannot be left sleeping on a guerney in the bright sun, what medicines he needs, at what dose & what time. I brought a sheet with 8 or 9 Walgreens stickers on it so they would have his medication list in his file, yet I have to remind them that he needs his Reglan 30 minutes before he eats, or that he gets the Hydrocodone every three hours, etc. For example, he had a pain pill at 3:45 am yesterday before we left home, then, of course, it was several hours before he was in his room. I had talked to the nurse as soon as I found him in his room (read yesterday's post!) but it actually took Earl "complaining" (that's a nice word) to the resident so he could get his first pain medicine around 12:45. You would think, given the history, that they would have kept up his pain management schedule as much as possible, but it was not until I (retold) the entire story to the nurse and the resident, that they started giving the pain pills every three hours.
Anyway, enough of my ranting - I just can't wait to get home again.
Depending on the results of the swallow, hopefully good, Earl will get a lunch tray of clears, and then can go home. I hope to get on the road before the evening traffic.

"I feel like there's a piece of plastic in my chest....."

2005-08-18T15:25:00.000-05:00

And there is.

We left home about 4:10 this morning--traffic was almost non-existent on the tollway. Got to Rush about 5:20 am. After registration, normally I was only allowed to walk with Earl to the "doors to pre-op" and had to say good-bye. Today, the nurse said I could go with him to help him change clothes. After answering all the detailed health questions (again) and advising them about the PDT & the Photofrin injection, the nurse suggested I "go upstairs" with him to make sure they are aware of it.
Alright-y.
I had to put on a blue gown, although they said nothing about my probably germ-laden tote bag. We waited again and a nurse for the anesthesiology (isn't Spell Check great?) team came in and (again) asked the same questions. As she was leaving, Earl realized that the rubber band had come off his tube & his entire dupa was wet, as was the gown & sheet. After we closed it off, he dried off & was given a fresh gown and a blanket to lay on. She then sent in a nurse who was "qualified" to access his port, but they were unable to draw from it. The nurse called an attending (doctor) to see if he could do it; no. They decided they had to put in the IV (the larger line is better anyway in case they need to push more fluids) and they would check out his port while he was "under". While this was taking place, I think the stress combined with lack of sleep just got to me and I started to tear up. The next thing I know, a blue clad woman was handing me one of the hospital mini boxes of tissue. I stepped out of the curtained area to talk to her; her name was Sandra (!) and she is a Chaplain-in-training. We talked about 6 or 8 minutes more while they were trying to access the port. I finally went & kissed Earl on his bald spot (which, by the way, seems to be growing since he is losing hair from the chemo) and Sandra went with me downstairs. I will probably never see her again, but she was there when I needed her.
It seemed an eternity before I talked to the doctor on the phone in the Smith Lounge. He said it had gone well, but they had to cut off the flap on the stent because it kept crimping. The flap was kind of experimental anyway, and a pet project of Dr. Warren's. He said Earl will do the barium swallow today and if he feels well, could go home tonight. (We had been told previously he would stay overnight). We'll see.
I waited almost another hour, and finally went up to the receptionist again. She checked and said, yes, he is in his room, and what's going on here? (I don't know-you tell me). She wrote my new visitor tag as she was talking on the phone--Room 870South, no? It's North? Ok, Room 870North, and gave it to me. I went upstairs; Room 870North was empty. Ok, he must not be up yet; this is what happened on June 14. I waited - I walked east - I walked west - I walked east back to the room - maybe they used the other elevators - no - he is not there - I walked west back to the elevators I thought they used for post-op - waited - waited. OK. What's going on. I started to get worried. I went to the nurses station - OH! Mr. REINHERT? HE'S BEEN MOVED TO 871North! As I walked to 871North, I said to myself, in a loud voice, "There's NO "H" IN OUR NAME!" Earl was on his side; I noticed dried blood in various spots. He said he had been there since about 10:15 (45 minutes). (It was then that I remembered the change of nursing shift happens around that time). I asked him how he felt, and he said ...............

We'll see how he feels later today.

Memory--all alone in the moonlight

2005-08-16T18:30:00.000-05:00

Thursday, August 11
Once Earl was out of surgery and in his room, my sister went home after visiting him in his room, and will come back tomorrow to take us home. She has numerous health problems herself, and doing something like this takes a lot out of her, I know. She will push herself to the edge of exhaustion to do for other people. I hope I can pay her back someday.

When I got back to the room about 1:30pm, Earl was sitting up with a food tray in front of him. There was broth, orange jello, grape juice, coffee and orange sherbet. I asked him “if he was supposed to have that” – he said “they brought it to me”. I checked the name & room number on the sheet on the tray—it was correct. He (very gingerly) tried swallowing some broth & orange jello. Within 10 minutes, he was bringing it all up again. He decided to hold off on trying any more. In the next hour or so, the resident on duty came in. He was surprised to see a food tray, as was the nurse, who came in later. The kitchen actually called while the resident was in the room & asked if we had received a tray. She wanted to know what he wanted for dinner. The resident (his name escapes me) wanted to talk to them. He advised them that “this patient is actually supposed to be N. P. O.”. Hmmmmmmm. Five minutes later, the fluorescent “N. P. O.” sign went up on his door.

Friday, August 12
After our exhausting day on Thursday, you would think I would sleep, but too many interruptions and a very uncomfortable "bed" caused me to be wide awake after about an hour nap and I was, again, wandering the halls of Rush. In those initial few days after the first surgery, I walked the halls, stopping where I could find some privacy and sat & cried. I would sneak a cup of hot water from the now-closed Smith Lounge & use tea bags I had brought from home. If I sat in one particular chair in the empty, low-lit lounge, I was hidden by a large pillar from passers-by in the hallway. I may have been on a security camera somewhere, but they may have overlooked it, due to my obvious semi-controlled hysteria.
Last night was different: I was able to get my hot water from the nurses' locked beverage & snack room; they give primary care-givers the code. I came down to the Atrium; there was the same tall, black, mentally-challenged old man cleaning the floors; there was soft, jazzy soul music coming from Au Bon Pain Cafe; there was the cutest 5 or 6 year old black boy in the Cafe wearing a visitor tag, but obviously hanging around the cafe at 12:45 am, because his mom or dad or whoever was working in the 24 hour cafe. He had a plastic milk crate & was busy inventing all sorts of games. I smiled as I saw him sit on the bench seat, raise his feet & put both feet in the suspended crate and attempt to rotate the crate, then jump up & use it as a step stool, looking at the racks of prepared baked goods. It felt good to smile.

I realized that I needed more than the approximately 75 minutes of sleep I had stolen and I went back upstairs. When I returned to the room, Earl was sleeping, having received his pain medicine at midnight and his sleeping pill at 11pm.
I looked out from Room 838N and north over the city. The flashes of white light from the El train as it made the curve, leaving the area under the hospital, were as bright as a flashbulb. The train has only four cars at that time of night; there are eight cars during morning rush hours. I can see the United Center and Malcolm X College very well from this room. I tried again to sleep and forced my mind to think of other things. All I could think of were song lyrics, ranging from Broadway shows (Cats) to dumb country songs ("Sleeping Single in a Double Bed"), and whenever I heard the El, "The Trolley Song."

Dr. Warren had told us again yesterday that the tumor would swell in the next few days, causing some pain & possibly a burning sensation in Earl’s chest. The tumor, supposedly, then dies (at least a portion of it) and turns the consistency of toothpaste, and is eliminated. We will be going back to Rush next Thursday (August 18) to have the stent put in, another overnight stay. Without it, the opening will not last more than six weeks. I think Earl does not want to try again to swallow until the stent is in; not because of the pain, but because of the fear of failure.

Sunday, August 14
Back at home, we try to keep medicines straight, and manage the pain. I will usually sleep on the couch until the sleeping pill (usually given at 11pm) wears off enough that the pain wakes him up. With his break-through pain med (Hydrocodone) having to be administered every three hours, neither one of us is getting very much sleep. Most of the time, I will then go up to bed, but always have a hard time going back to sleep. We have not again used the Kadian (a timed-release pain med that Carole at Dr. Klein’s office thought would work in the G-tube) since it was nearly impossible to get the static electricity out of those little white balls, into a syringe and into his tube, which clogged the next day. We had to unclog it with Coca-cola (regular, not diet!). The spitting and vomiting comes & goes, usually worse in the late evening. When I’m cleaning the cups, I think of my first experience, on our honeymoon when Earl was sick after our dinner on the Robert E. Lee riverboat in St. Louis. We each had a shrimp cocktail, I had lobster & steak and he had crab & steak. I had given him some of my lobster, but did not take any of his crab. The combination (or the amounts!) of all three apparently made him sick. That was my first experience with “in sickness & in health”.

As I finish writing this on Tuesday, Aug 16, I think about our 31st wedding anniversary tomorrow and regret all the times I was irritated over some dumb, little thing in our marriage. We will probably cry together and wish things could go on as they had been before, but will hope that after August 18, Earl will be able to eat and swallow and celebrate our anniversary, a little late.

Procedure update

2005-08-11T14:02:00.000-05:00

It is almost noon on Thursday, Aug. 11 and I am here again at the Rush library for this post.
We left home this morning around 4:05 am; my wonderful sister picked us up and drove us here. Earl had some distressing nausea & vomiting on the trip, but it only took around 1 hr. & 10 minutes to get here. The procedure was scheduled for around 7:30 am; they want you here 2 hours before.
I talked to the doctor around 9 am and by 11:00 or so, Earl was in his room. Dr. Warren said he "got a good burn", meaning he was able to open the esophagus. He will have to stay at least overnight and will have to do a swallow (barium) test this afternoon. Hopefully, we will come home tomorrow, but are tentatively scheduled to have the stent put in next Thursday.
I will try to update more often.
Thanks again to everyone for their prayers, cards and help.
Gayle

The Morton Girl Connection

2005-08-08T10:17:00.000-05:00

One of the most recognizable icons of the 20th Century is the Morton Girl on the blue salt box with her big umbrella and the catch-phrase “when it rains, it pours”. She has had several Extreme Makeovers; the last one looks at least 20, if not 30 years old. Being the nostalgia nut that I am, I vaguely remember mailing away for a set of 4 ceramic mugs sporting reproduction pictures of the Morton Girl through the years. The only one still in my cabinet is the one from 1914. She looks so quaint; so different from the one on the box today, but still has that huge umbrella, shielding her from the pouring rain. We all need an umbrella to shield us in time of need.

PDT
These three initials have been on my mind constantly the last week: As I think of my husband: Permanent Dirty Trick (or Pretty Damn Tough)
As I am driving: Poor Drivers Tailgate
(Morton Girl Connection: the air-conditioning in my car went out)
As I think of my husband: Pain Denies Tranquility
As I open our phone bill: Phony Dialing Target
(Morton Girl Connection: we got “slammed” and our phone bill tripled)
As I think of my husband: Preserve Dad’s Tales
(A good connection: one of our neighbors gave Earl a journal for him to write things he might want the kids to know)
As I get Government bullshit from Social Security: Postponed Disability Trust (Morton Girl Connection: after I gave them all the info they asked for, they actually sent Earl a form to fill out that asks what he can no longer do; I wrote that he can’t do ANYTHING, including EATING.)
As I think of my husband: Pharmacies, Doctors, Tube
As I fall asleep trying to get on the internet: Poky Dial-up Technology
(Morton Girl Connection: All messages disappeared from my Inbox for the 3rd time in 2 months)
ALL OF THE ABOVE “CONNECTIONS” would have thrown me in to a tizzy 3 months ago. Now I know how trivial they are, compared to what Earl is going through.

What these initials really stand for is:
Photodynamic Therapy
Our appointment with Dr. Warren on August 1st was to discuss having a stent put in Earl’s esophagus to make an opening so that he could actually eat & swallow. What Dr. Warren advised us on that date, is that at this point, the only thing that would hold the stent in place would be the cancer. IF the chemo is doing anything to shrink or kill the cancer, the stent could slip out of place and would have to be surgically removed. Besides, a stent would not be the best choice for Earl, since there is nothing to stop liquid and/or stomach acids from coming back up if he reclines or even sits down within a couple hours after eating, not a good choice for someone who tires easily. Dr. Warren then advised us of the procedure of Photodynamic Therapy, or PDT, and Earl “signed on” right away, stating that he would take quality over quantity at this point. We will go back to Rush on Tuesday, August 9th and Earl will receive an injection of a drug called Photofrin (porfimer sodium) in his port. The drug invades every cell in his body, but healthy cells have no trouble casting it off, whereas cancer cells cannot get rid of the drug. We will then go home, and return on Thursday, August 11th, when Dr. Warren will activate the drug with a non-thermal laser inserted in a scope down Earl’s throat. The activation has to be done in a window of 40 to 50 hours after the injection of the very-costly drug. (I spoke to one of the case nurses at our insurance, and it appears that the drug is covered. If it was not, we would still do it and pay it off when we get the money—it is that important to Earl (as it would be to ANYONE who has not swallowed anything since June 23rd.) The procedure has an 85% success rate. Since it was such a long-shot that Earl contracted this deadly cancer, I dearly hope he is not in the other 15%.
A major consideration of this procedure is the main side-effect of the drug: it causes the body to be extremely sensitive to light for 4 to 6 weeks. Earl will not be able to have any exposure to direct sunlight or even strong indoor lights, such as reading or examination lights, as he would suffer severe burns on any part of his body. He has to wear long sleeves, long leg pants, hat, sunglasses, and gloves home from the hospital after the injection. Also, he is scheduled for his 2nd round of chemo the following Monday, which will probably make him too sick to even want to eat, once the swelling goes down after the laser activation. Earl’s dream dinner of boned & buttered lake perch at Tiebel’s will have to wait at least a week after our 31st Anniversary on August 17. Maybe we should borrow the Morton Girl’s big umbrella to keep off the late August sun in the car on the way to Tiebel’s.

As I again think of my husband: Pray Death Transcends

Update

2005-08-01T08:10:00.000-05:00

The process of the infusion of the Cisplatin at Porter Hospital last Tuesday took from 9 am when we checked in, until 8:30 am Wednesday when we arrived back home. There are many words to describe the next couple of days; lets just say that "horrendous" is one of them. I refuse to go into the gruesome details; just recalling it makes me want to cry.

The good news lately is that I was able to have the insurance company authorize a hospital bed and the Two Cal HN (Earl's food), which were both delivered Saturday, July 30. He has been able to get much better rest than he was getting in the Lazy boy chair. Jonathan and 3 of his buddies carried my rocker loveseat from the family room and put it in the living room, so the bed is in the family room, adjacent to the kitchen. Earl did not want it upstairs--he wanted to be by the "action". I am going to call Walgreens and Aetna again this morning, however, since (after the delivery man left), I discovered they are charging Aetna over $500 ($18.00 apiece) for the very same syringes I bought at Walgreens for $1.99 each. Since it was authorized directly by the insurance, my cost will be about the same, but that is SO RIDICULOUS, I have to let someone know, even if I have to call the Fraud line. I won't spend alot of time on it, but I have to try. The Two Cal is also about double per case what I paid online and $10 more than getting it through Walgreens pharmacy.

I've found that just writing down everything from medicine times to temp readings was getting too confusing, so I made up a spreadsheet blank & keep it on the table. It makes it much easier to find out what time his last pain med or B-M occurred.

After the chemo, when Earl was not throwing up (something must be getting through from the stomach, unless it is all coming from the lining of the esophagus) we talked again about getting the stent put in so he can have a little more normalcy in his life. Earl had wanted to stay around here, but none of the surgeons on our plan in Indiana do that procedure, so I convinced him to go & talk to Warren again. I was able to get an appointment for today, Monday, Aug. 1, at 3:15 pm. I also called Klein's office (oncologist) just to get an OK, since he is already having the chemo. I thought it would be a simple question with a call-back from the nurse after she talked to the Dr. Jennifer (the same nurse who talked to us while the pump with the 5 FU was being put on) called back & said the Dr. said that would have to be discussed at an office visit. We have an appt. today at 10 am with Dr. Munn (Dr. Klein's husband), since Klein's office hours are in the afternoon only. I am praying that starting the chemo did not preclude him from having this procedure. Earl broke down yesterday and said that "this is not a life" and "at this point" he would opt for "quality over quantity." He "just wants to eat". If the vomiting after the chemo would cause a problem with the stent, he said he will not have another treatment.

If I have neglected to respond to any card or e-mail, please forgive me. We thank everyone for your cards, gifts and, most of all your prayers. Please keep praying.

"Finding Chemo"

2005-07-22T20:16:00.000-05:00

When Katie was 2 years old, shortly after we moved in to our new house in Valparaiso, we started having Family Night or FART (Family Arts & Recreation Time.) In the early years, it may have been finger paints, Play-dough, or Legos. As the kids grew, FART evolved with the kids' changing abilities and we did jigsaw puzzles, Junior Scrabble, or whatever they wanted. During the summer, we would pack up our snacks & P. J.’s and head out to the 49’er Drive-In, which had been cleaned up and restored to a retro 50’s charm. Earl & I went once or twice in the days before the kids, but then it was a dump. So many potheads were using, that you could not sit out on the patio without getting high. With the renovation & the policy instituted by the new owners (friends of my sister) of charging by the car-full (I think it started out at $5.00), families took over. Just like at the old Y & W, there was always a double-feature, starting out with a cartoon. We would leave home when the sun was still shining to make sure we could get the spot we liked and have time to play catch or Frisbee in the grass at the base of the screen. The admission price was our only expense, as we usually took all our drinks and snacks, with only the occasional purchased ice cream or candy goodie. We never had to “shush” the kids or worry that they were kicking the back of the seat in front of them. They could fall asleep when they wanted and Daddy would carry them into the house and put them in their beds. We are so glad that our kids were able to have that experience, as we had as kids. A big part of Americana has pretty much gone by the wayside and it is so sad.

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The start of Earl’s chemo was (I guess) routine, at least for the nurses in Dr. Klein’s office, but confusing for us. When we arrived at the office, we waited around 10 minutes, then were taken into the treatment room filled with big, comfy, reclining chairs. We had one nurse (Jennifer) explaining about the procedure and the drugs; we received several pages of info, and Earl signed a consent form. The pump was then connected to his port-a-cath by a 2nd nurse (or tech) and it started delivering the doses of 5-FU. Jennifer explained that the pump would be on for four days, then we will go to Porter Hosp. on Tuesday morning. Earl will then be hydrated and the infusion of the Cisplatin will begin. At this point, I was confused (which is nothing new), spoke up and said that I thought (she told us) we would be going to the hospital today to begin the 2nd drug. She apologized and said that she HAD told me that; that is how they usually do it, but in conferring with the doctor and the nurse practitioner, they unanimously felt it was important to have uninterrupted delivery of the 5-FU for the whole four days before the 2nd drug was started. Between the hydration (to guard against kidney failure) and the drug infusion in the hospital, Earl will have to stay in the hospital for close to one full day. Three weeks from today, the cycle will start all over again. At least we will have a better idea of procedure at that point. I guess they figured they had no reason to let us know of the change in plans ahead of time. Besides, what choice do we have?
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In the colder months, when we stayed home on FART night, we sometimes had a Popcorn party with a video. It seems so simple now, and, of course, it was. But to a 4 or a 7 year old who normally went to bed at 7:30, it was special to be able to stay up until 10:30 at night! I’m sure we watched every Disney movie that was on video, but also other movies or I Love Lucy on Nick-at-Night. Some of our favorite videos included home “movies”, O. Henry’s Full House, Some Like it Hot, The Blues Brothers and Back to the Future. Alas, as the kids grew and started having other plans, FART eventually disappeared. A couple years ago, happenstance brought us together one afternoon and the four of us watched Finding Nemo, the sweet story centering on fatherly love.
I hope our kids will remember how much their father loved them.

Pain, pain, go away...........

2005-07-20T14:58:00.000-05:00

July 20, 2005

Last weekend had its ups & downs (mostly downs), as Earl needed the Hydrocodone more frequently. I reminded him that our VNA nurse, Debra, said we could cut the backing on the Fentanyl patch to only apply half of it if he thought using the whole thing at one time was too strong, or we could get a different strength. On Friday, he did not want any part of it. By Monday evening (7/18), he said maybe he ought to try the patch again (the whole thing) so we applied it on his back. He still needs the Hydrocodone, but not as often. There is absolutely no reason for him to be in pain; the gagging/coughing fits he has are agony enough.

The beginning of his chemo is finally scheduled for Friday, July 22nd (Happy Birthday Sandy!) at 9:15 am. He will start at Dr. Klein’s office with one medicine and get the pump, then go to Porter Hosp. for a 2nd medicine where they will super-hydrate him. I have already picked up the two anti-nausea medicines prescribed by Dr. Klein’s office, so that is one less thing we have to think about doing on Friday.

Through the years, I have had self-image and confidence problems, but have never considered myself stupid, although I am certainly ignorant of many subjects and uneducated on many more. Given that, it seems to me with the gravity of Earl’s condition, it has taken an undue amount of time to get started on a treatment that MAY give him some relief. I often question whether or not we made the right decision in not going back to Rush for the chemo or stent surgery, or packing our bags and going to Cancer Treatment Centers of America in Zion, IL. (Something about that place just did not sit right with me, although I left the decision up to Earl.) After the time spent at Rush, he told me several times that he wanted to stay closer to home, so I respected his wishes. I mentioned the stent again yesterday and told him we can call Dr. Warren anytime to arrange the surgery so that he can eat something. He said he does not want to go back to Warren or to Rush and wants to wait & see what the chemo will do first. So again we wait. In the meantime, between 3 cans (if we’re lucky) of Two Cal HN and some apple juice, he is only taking in around 1,500 calories a day, and anyone who has ever tried to diet will tell you that is not very much. Debra has told him a couple of times to try and build up some reserve of weight before the treatments, but he insists that his stomach just cannot hold any more than 3 cans a day. This is the highest calorie drink that we could find; pray that it is enough to sustain him in the rough weeks ahead.

"Buy me some peanuts......and Demerol...."

2005-07-14T22:31:00.000-05:00

Flashback to April 27, 2005, before Everything Changed

“Mom, do you think you can try & get some Cubs tickets?”
“I don’t know, Jonathan, but I’ll try!”
Mom, knowing well that trying to buy Cubs tickets long after the “virtual waiting room” was history, still diligently goes online, clicks on July 14, and—GLORY BE! MAXIMUM OF 6 TICKETS, PLEASE – TERRACE RESERVED, ON FIRST BASE SIDE. Mom ponders: “Well, this will be part of our Vacation this year. We were thinking of going to Chicago, anyway!” Mom realizes that there was not even a game originally scheduled for July 14, so it must be Fate, again, that brought her to this Thursday after the All-Star Game. (There’s that Blind Squirrel Theory again).

Fast forward to 6:45 am, July 14, 2005, after Everything Changed

“Bye kids! Don’t be late for the train, and have fun at the game! Dad & I are going to the hospital for Dad’s port-a-cath insertion!”

One of Earl’s favorite snacks whether at a ball game or at home, was salted-in-the-shell-peanuts. In previous Wrigley Field visits, he would buy them from the vendor outside the park, saying they were just as good as the peanuts bought inside the park, but cheaper. At home, he had become used to the dry-roasted variety in the jar, but still enjoyed them. Today, instead of eating peanuts, Peanuts were on the sheets in the Pediatrics unit where he was taken before and after the port was installed. I thought I was not hearing the Pink Lady correctly when she answered my question of “where to now” with “Peeds” after we left the registration cubby. As it turns out, every occupied room in the hall of Rm. 212 in the Pediatrics wing contained an adult instead of a child. Cindy, our nurse, said these were the only vacancies in the hospital today. As I sat in the comfy parent recliner next to the rocking chair and jail-like crib, I stared at the knee-high blackboard mounted on the wall. Earl was trying to relax in a twin bed near the window while the first nurse attempted to insert his IV. After what seemed like a long time (to me) and an eternity (to Earl), she announced that she was not successful and would have to call someone else. Cindy was able to get the IV inserted after warming Earl’s hand with warm towels. I had told the nurses when we got in the room that his last pain medicine was at 1:30 am (this was OK’d by Dr. Klein’s nurse practitioner, Carole, even though the original pre-surgery instructions were “nothing after midnight”). Dr. Alkadri, who was going to do the surgery of the port-a-cath insertion, ordered a Demerol shot so they would not have to flush pain med into Godzilla with 2 or more ounces of water, which would have increased the risk of complications. He was to have “conscious sedation” again for this procedure, and the Demerol really relaxed him before the procedure, as well as managing his pain.
I was notified about 10:50 am that he was resting and the surgery had gone well. His blood pressure had been up a bit during the surgery, but they gave him a small dose of medicine which helped. We went back up to his “Peeds” room, and after taking his vitals, they said we could stay as long as we needed. He went back to sleep and I worked a crossword puzzle. We left about 12:30, to get home for his medicines and to get something in his stomach. The first thing he wanted was his pain med, then about an ounce of Two Cal. Unfortunately, he started a heaving fit, which caused water, medicine, and Two Cal to back up into his syringe, almost pushing out the piston. We had to empty it and were not sure how much pain med he actually absorbed. He wanted nothing else to eat, and after a while, took ½ pain pill, but no nourishment. The afternoon passed, with only water & apple juice, then a whole pain pill at 6:00 pm, but he still did not want to eat.

As I write this at 6:53 pm, I am slightly put out that we did not receive a call back from Dr. Klein’s office today. I had called them around 2pm advising of the successful surgery and do we come back to their office next, or when does he start his chemo? I know that Earl is only one of their many patients, but time has a way of slipping through our fingers and we need to catch and hold as much of it as we can. It will probably be next week before he starts treatment, with tomorrow being Friday.
I wish sickness and suffering could take a week-end break.

It is now 8:19 pm, and after another unsuccessful attempt to get him to eat, I am at a loss as to what to do. He got up to come to the table and had another terrible heaving, choking fit and then refused to eat. He actually weighed in at 116 today, after weighing 115 last Friday. I have NO idea how that happened, unless one of the hospital/doctor scales is off. I hope the water & apple juice that he had earlier today will prevent dehydration. I will try again in an hour or so, but cannot force it on him.

That’s all I can write for today. I feel so helpless.

"Houston, we have a problem........"

2005-07-11T14:58:00.000-05:00

July 6, 2005

As the anniversary this month of the 1969 landing on the moon approaches, I clearly recall staying up very late to watch the TV coverage of the astronauts hit golf balls and bound across the moon. I remember thinking (through my patriotic tears) that if “we” could accomplish such a Herculean task as that, surely a world free of disease and wars could not be far off—we could do anything. Then came Apollo 13. A blasé American public suddenly woke up and held their breath until the three men in that capsule returned safely to Earth. I firmly believe it was God’s hands that brought them back; it was God, the Master Engineer, who guided the rocket scientists and engineers to design a contraption to keep them alive. It was God’s work, not the Government. And the wars and disease continued.

After our appointment with Earl’s surgeon, Dr. Warren, and our respite in the Rush library, we kept the appointment with Dr. Abrams, the Chair of the Oncology Dept. at Rush Medical Center. This office was different: I’m not sure how to describe it, but you could tell it was designed for patients who are more seriously ill than the average patient and quite large. Besides being just steps away from the ground-level door and special parking for patients, there was a smaller room with a round table and chairs (like for playing cards) and a large room with a widescreen TV, and bookshelves from floor to ceiling with hard-cover and paperback novels. After filling out several pages of forms (again) we were taken back through doors with yellow & black radiation symbols on them and Earl was weighed. He has, of course, lost more weight – I believe it was 115. The nurse asked some more questions, took temp & B/P and said the resident would be in shortly to do an exam, and then Dr. Abrams would come in.

The same resident that talked to us in the hospital when Dr. Abrams was unable to make it, Neil Seif, came in with a female student and talked to us and examined Earl. After some general discussion of Earl’s physical & mental state, they both left the small exam room. Shortly after, I heard Neil speaking outside the door in a muffled voice and soon Neil, the female student and Dr. Abrams came in. This was the first time we saw Dr. Abrams, and I immediately noticed the black cap on his head, the confirmation of his strong Jewish faith and the reason he was unable to see us after sundown the Friday we were in the hospital. He wasted no time, but yet was very considerate, calling Earl “sir”, talking the whole time he was showing the female student how to palpitate Earl’s liver. He asked us how long it had taken us to drive there (approximately 80-85 minutes) and were we seeing a doctor in our hometown? We explained of the appointment on Friday with Dr. Klein in Porter, IN and how we were trying to learn as much as we could and gather as much information as possible to make an informed choice of treatment. (Translation: blind squirrel theory)
Earl sat in the chair next to me, and Dr. Abrams then sat down on the exam table and said, and I quote, “We’ve got a heap of trouble here.” He said that Neil had also discovered a swollen lymph node on the left side of Earl’s chest, below his neck that had not been noted previously. He spoke of the downside of the treatment, versus “quality of life”, and generally did not give us the encouragement we had been hoping for so desperately. He said he did not feel that radiation was the best choice at this point; also, the course of treatment would be 5 days a week, for 5 to 6 weeks, and if it was given at Rush, it would mean close to a 3 hour a day round trip, which would further tire Earl. I told Earl that we could do it, if that is what he wanted. We have many people who would help us out, etc. The doctor then asked us what we understood about this and what we were feeling. Earl turned to me with his beautiful gray-green eyes (one of the first things that made me fall in love with him) and expectantly waited for me to speak. I tearfully and hesitantly said that, at this point, I felt we needed a miracle and that we probably would be lucky if we had a year. I immediately wanted to take back the second part of the statement (maybe if we don’t actually say it out loud, it won’t happen.) Unfortunately, Dr. Abrams looked me straight in the eye and said I was a “very smart woman.” I was never so unhappy in my life to be “right” as I was in that office. As he handed me a new box of tissue, he apologized in an attempt to console us (me, really, as Earl just sat stoically, still in the exam gown.) He then said he wanted the name and number of Dr. Klein, and said he would call and discuss his findings with her. I then started babbling about how this man next to me was such an accomplished musician, a gifted guitar player......... My mind was screaming that they can’t just tell us these terrible things, send us on our way and cluck their tongues and shake their heads! They have to KNOW this man! Earl just put his hand on my arm, wearily shook his head, and gently said, “Don’t do this…” I knew he was right; I also know that I am not the first person to fall apart in that same exam room.

We left the office and after another pain pill, drove home in silence, each of us with our private thoughts. Earl dozed while I drove home, trying to think of anything that would not make me cry. I kept thinking of all the benefits that we were told would come out of the NASA space program, and all I could think of was Mylar balloons and Tang. It certainly has NOT stopped the wars, and my husband is one of many who are proof that man has a long way to go in the fight against this devastating disease.

Friday, July 8

It was hot when we drove to Dr. Klein’s office, north of the expressway on the Rt. 49 bypass. We were shown to an exam office with a comfy loveseat that Earl sat on – I sat on the chair next to him. A nurse took some information, then a nurse practitioner came in for a more in-depth interview. Earl napped while waiting for Dr. Klein. She came in, sat down & said she had talked to Dr. Abrams and then asked Earl a few more questions and we discussed visits with the previous doctors. She said that the chemo is a 5 day therapy that starts with 23 hours in the hospital and continues out-patient with an infusion pump. Earl asked if the treatment would allow him to eat. Dr. Klein said she does not know that for sure, but a successful treatment may shrink the tumor. She gave us the names of several local surgeons from whom she would accept a Port-a-cath. Since it was already 3:30 on Friday, we can check our insurance plan and get back to her receptionist on Monday. Earl was scheduled for the first available CT scan on Monday, July 11, and will also get some blood tests, both as a baseline before the chemo begins. My sister graciously offered to take Earl for the tests at the Portage Hospital location so I could work most of Monday. I am trying to work when possible; Earl insisted I get out of the house and said he needs time alone, also.

As I finish writing this at 12:50 pm on July 11, I am again overwhelmed by the kindness and generosity of friends (and I include relatives in that!). Just last Saturday, Jonathan told Earl & I of the account that was set up at Centier Bank, started by my neighbor, Rhonda, who works there. I was surprised and totally overcome with emotion. Earl and I hope that one day we will both personally be able to thank everyone who sent a card or gift or simply said a prayer. Until that time, please accept our sincere gratitude and love.

Sweet Home Chicago -?

2005-07-06T15:15:00.000-05:00

Well, it's like old home week; it is amazing how I learned my way around this maze of buildings, hallways and elevators in 7 days. The drive up here this morning was not bad either; I'm sure the drive home will not be as pleasant.
We are back at Rush, just passing time until Earl's appointment with the radiation oncologist, Dr. Abrams. Did I really say "just passing time"? Take it from someone who's world has been jolted--never "just pass the time". Once that minute, that second, that instant is passed, it will never come again.
The appointment with Dr. Warren went as well as can be expected. He discussed the possibility of putting in a stent so that Earl could eat & "improve the quality of his life". That would be a fairly minor procedure, with no incisions - it would be installed down his throat & only require an overnight stay. Dr. Warren could have done that at the time of the surgery, but said he did not want to do it without previous discussion, as there are some dangers. Besides, it may be easier to get in if treatments shrink the tumors.
We will talk to both oncologists (our appointment on Friday afternoon is with the chemo oncologist in Chesterton) this week, and may possibly be going on July 12 to Zion, Illinois, to the Cancer Treatment Centers of America. I spoke to them yesterday and will call them back tonight. They take a "whole body" approach - including medical specialists and nutritionists. Since cancer is all they deal with, they would coordinate everything so that each doctor knows what the other is doing and discuss options and treatments. I guess we were very naive, but I thought that is what they would do here at Rush. I was wrong. This is not St. Elsewhere, or E. R. If anyone has any experience, bad or good, with Cancer Treatment Centers of America, please let me know. I did find an article on Google about the FTC action where CTCA had to pay a fine for making unsubstantiated claims (of cures). People in (our) situation are desperately looking for "a cure" and think that someone, somewhere, must be able to make it "all better." We know that is not always the case, but we can't give up.
So, after our appointment at 2:30, we'll have:
"Half a tank of gas, half a pack of cigarettes (not) and we'll be wearing sunglasses........."
Thanks for a great movie, John B. and Dan A.

See-saw

2005-07-04T06:01:00.000-05:00

Long before video games, IM, and movies-on-demand kept kids busy in the summer, there was The Playground. I loved the monkey bars & can remember hanging upside-down for several minutes and actually thinking it was fun. At school, back when little girls wore dresses every day (except in the winter when you were permitted to wear “leggings”), I envied the boys because they did not have to worry about their underpants showing. Even though I have always been afraid of heights, I loved the swings and the feeling of flying. The closest playground to my house on Maryland Street belonged to St. Joseph’s (The Worker) Catholic Church. There was a huge metal fence around the entire area, with gates that were usually chained & locked, but the long chain from post to gate left a gap just big enough for us to squeeze through. I always enjoyed the see-saw on the playground. The feeling of weightlessness for a split second when you see your partner at their lowest point was somehow empowering.

I have not felt empowered this week, seeing my partner for the last 30 years at some of his lowest points to date. My heart aches every time I hear him trying to bring up the mucus that normally secretes and goes down our throats, through our esophagus and into the stomach. He has taken to eating ice chips; they refresh his mouth and say they help bring up the foul-smelling mucus.
Tuesday started badly, with Earl commenting on a bad headache. He took his blood pressure twice, with a reading of 154/110 the 2nd time. I called Debra, asking if I could dissolve the Lotrel capsule contents in water & inject, or is this a time-release medicine or what. She advised that we could do that and to call her back if there was another problem. I told her Earl had an appointment with Dr. Gupta at 10:15, so they would check his B.P. again.
Earl was still not feeling well when we arrived at the doctor’s office, and the 35 minute wait for the exam room did not help matters. He was lying on his right side in a cold sweat while the nurse fumbled for a blood pressure cuff that would fit his arm. At least his blood pressure was normal now.
When Dr. Gupta came in, one of the first things he did was don some gloves & then peel off the Steri-strips that were put on his belly incision after the operation, saying that if they had not fallen off after 2 weeks, it is time to remove them. We discussed various other matters, including pain management. Dr. Gupta prescribed the same Fentanyl patch that Earl had received in the hospital. This is stuck directly on the skin, and delivers a measured amount of medicine for 72 hours. At the suggestion of the VNA dietician, he also prescribed Two Cal, a higher calorie (475) supplement that you cannot just buy (like Boost or Ensure) at Wal-Mart, and a cream for the G-tube site.
The Two Cal had to be ordered (Walgreens even called 2 other pharmacies—no one had it), but we applied the pain patch that evening. It seemed to be working fine and I was relived that his pain would be better controlled. Selfishly, I felt a slight burden lifted, as the every-six-hour Hydrocodone pill (which had to be crushed, dissolved and put in the G-tube) had left both of us with less than six hours sleep each night. By Thursday morning, however, Earl woke me up about 5:00 am, was very agitated and said the Fentanyl patch was making him nauseous and giving him nightmares about someone trying to strangle him in the backseat of a Buick. (Go ahead—it seems funny to me too, now, but it wasn’t then!) I took the patch off of him and he went back to sleep. A couple hours later, he started back on the Hydrocodone.
After making sure that someone would be able to come over to help out with Earl’s meals, I went back to work on Wednesday. (All of my girlfriends at work were happy to see me and my boss, Mike Pampalone, Jr., assured me that I could take whatever time I needed and to let them know if we needed anything. Believe me, that is one less worry off my mind.) Katie was babysitting all day & Jon had to go to work at 1:45, so my sister, Sandy, came over in the afternoon. The kids helped out on Thursday & Friday, so I could go to work. I hated to leave Earl, but he actually told me he thought it would be good for me to go back to work and that he needed some time to himself, anyway.

Independence Day?
It is now 3:37 am on Monday, July 4. After Earl woke me at 2 am saying he needed his pain medicine, I tossed for over an hour then decided to get up & work on the blog. I apologize for not posting more frequently lately. I had a lot of time in the hospital, but after getting home, there is always something to do.

Have you ever thought how food would “taste” if it went right to your stomach and bypassed your mouth? Earl says he has those sensations, as he did when he wanted 7-up a couple days ago. I was worried about the bubbles, but he insisted it would be OK. He loved the sensation, saying it “tasted” great. Unfortunately, it apparently did not sit well with him, as something (also possibly the grape juice) gave him distress for several hours afterwards. He is resigned now to sticking to apple juice, the only juice that does not seem to bother him. I worry about his calories; some days he has less than 1,000. One day he had just over 1,700, but averages around 1,200 to 1,400. Even with the Two Cal, he insists he can only “eat” so much. If we could get him up to 4 cans, (1,900 calories) he would not be losing weight as quickly as he is. He has to beef up, as he will need all the weight he can get when he starts treatments.

Wednesday, July 6, is his follow-up appointment with Dr. Warren, the surgeon and an appointment with the radiation oncologist at Rush, Dr. Abrams. Friday, the 8th, is the appointment with the chemo oncologist, Dr. Kline in Porter (Chesterton), IN. She was highly recommended to us, and as the chemo oncologist, Dr. Villaflor at Rush told us, the drugs are the same anywhere, so why make the trip to Chicago when he can get it closer to home. We will have to evaluate what all the doctors say and decide on a plan of action. Earl has said that when he can eat again, he wants to go to Tiebels in Schererville for their boned & buttered lake perch. My wonderful sister said she would buy his dinner when I told her what he had said. I hope Earl’s positive attitude continues through the treatments. As I have said before, he has been very positive all of his life, but this will be his biggest challenge. After being sick a couple days this week, I feel his resolve already slipping. Any of you that have had cancer or some other serious condition can relate, I’m sure. When there is a constant reminder of the situation, in this case, “Godzilla the G-tube” or when the pain returns, or when he has “a meal”, I believe it can shake the resolve of any person, no matter how strong they may be. He tires more easily, does not want to go anywhere and barely showers or gets dressed. I’m sure that depression is starting to creep in and wonder if a medication would help. I keep thinking of that Best Buy commercial with the Pinocchio-like little being and the strings being cut so he can “go wireless” and be independent.
This will not be “Independence Day” for my husband.

Thank you again to everyone for your cards and e-mails. I have put them all in a scrapbook for Earl to read to remind him of how many people care about him and are praying for him.

Java Jive

2005-06-27T18:34:00.000-05:00

A couple years ago, we decided that paying a little extra for some really good coffee was something we deserved, as Hard-Working Individuals Who Don’t Drink or Smoke. The difference between Papa Nicholas, Dunkin’ Donuts, or Eight O’Clock, say, and Folger’s or Maxwell House is really noticeable when you love coffee, as we do. I started out 30 years ago using 2 sugars and cream in my coffee; now it’s “just black”, like Earl has always taken his coffee.
Saturday, June 26, started out with Earl waking me about 5:50 am, saying “time for breakfast!” I had been deep asleep, but vaguely remember a very dumb dream. Again, for that split-second, I thought, “How sweet! He made breakfast & has the coffee going!” Then, again, I realized this was not the same world we lived in 7 weeks ago, since now he is unable to EAT breakfast or even DRINK any coffee. I stumbled downstairs to start setting up his “breakfast”, when I saw that he had put everything out on the table, and just needed that extra set of hands to do the actual feeding. After “ingesting” his pain med with his “breakfast”, I started to make some coffee. He came over & sniffed deeply of the freshly-ground coffee beans. Although he has always told me I was a great cook, I think he misses his coffee more than my stuffed cabbage or kolacki. We could put it into his stomach, via “Godzilla”, but somehow, it’s just not the same.

The rest of Saturday seemed somehow routine, although it was nothing like Saturdays “before”. Debra, the VNA nurse who has been assigned to Earl, (not the same Deb as Friday) came over and introduced herself, took BP & temp, answered questions, etc. She reminded me of someone I had known in the past, so as I was walking her to her car, I told her that I thought I knew her, but her last name was unfamiliar to me. She said she married (again) several years ago, but gave me her previous last name. It turns out that our sons, both 19, were buddies in the same pre-school class at the Hebron Methodist church, and she & I had arranged a carpool with one other mom for the three-day a week class. She & I lost touch after the pre-school class, as we moved to Valpo during the summer of 1991, but she is a genuinely nice person--easy to talk to. She loves being a nurse for the VNA and would not want to work anywhere else.
All total, Earl took in around 1,200 calories on Saturday; I tried to get him to have another “course”, but he said he simply could not do it.

Sunday morning was hot and humid, even as we went to church for the 8:00 service. The church was almost too cool, although Earl said he almost fell asleep during the Message (no offense, Rev. Dave!) and was pretty tired when we got back home. With the addition of apple juice and about a cup of a Culver’s vanilla milkshake (almost melted), I figured out his calories for Sunday at around 1,440, which is still less than he needs. I will talk to Debra tomorrow & see what the VNA dietician is recommending.

I miss our Sunday digest of the morning paper with endless cups of coffee; I miss going to Menards or Home Depot and dreams of remodeling and home improvements. I miss Earl dipping up the huge bowl of ice cream that I nagged would leave him with another kidney stone; I miss making him tapioca pudding (his favorite). I miss the way he took such good care of the cars and the “man” stuff around the house. I miss all of that, but I’m sure not half as much as he misses the basic instinct of eating, and now, drinking, his beloved coffee.

Day by Day

2005-06-24T22:02:00.000-05:00

One particular song that keeps running through my head is “Day by Day” from Godspell. I have always felt a connection with the lyrics, and sang the song as part of a great choir at church, a few years ago. Talk about moving mountains; that is one powerful message. Listen to it sometime.

Thursday started well, with some apple juice going down slowly, but OK. The poached eggs did not go down too well – less than one. He mixed himself an Instant B’fast, but refused to let me measure the milk so we know how many calories he is getting. It was probably less than 6 oz. and he did not finish it. This was followed by 30-45 minutes of distress and pain. He gets hiccups frequently and by the way he flinches, I know they are very painful. My sister called and asked again if we need anything. She has been over or called everyday, besides being with me on the day of surgery & bringing the kids to the hospital on Father’s Day. She brought over a pack of furnace filters that we needed and also some food items she thought Earl would enjoy. Unfortunately, I doubt he will try & eat or drink anything until the tumor shrinks. By lunchtime, I thought I had convinced him to use the tube, but he became very upset and said he wanted to taste some chicken broth & carrots. After one spoonful, he started to mash the carrots with his spoon, and then asked for the potato masher. He wanted to put the broth in the tube, so I got out the blender & that is what we did. I was afraid it would clog, since the broth was homemade yesterday and more fatty (he can use the fat!) than canned. After the broth, he agreed to a supplement, so we injected that, as well as his pain medicine. When he wanted to rest, I told him I would go & see if we could find a better clamp for the tube & also buy a pill crusher. I went to two home healthcare places in Valpo, but they do not carry clamps for his G tube. I figured Ace Hardware or Auto Zone would be my only alternatives, but I went instead to Dr. Gupta’s office and talked to him. He explained a little more about the tube, arranged to have the VNA come & talk to us and made me feel that we were not going at this alone.

I called Dr. Warren’s office for the 2 week check-up appointment (July 6); that same day we are seeing Dr. Abrams, the radiation oncologist. Earl will need to get a chest X-ray that day also, before seeing Warren.

Friday has been a much better day for Earl, as he has resigned himself to not attempt to take any nourishment by mouth. As I write this at 7:45 pm, he is up to 1,070 calories, which is the most he has had in several days. He is napping now, but I hope to get another can of supplement in him yet tonight.

A wonderful R. N. named Deb came this afternoon from the V. N. A. She did an initial exam and assessment and even came back several hours later with a case of 300 calorie supplement cans after speaking to Dr. Gupta. Earl is to have 4 cans a day, during waking hours of, say 7:00 am to 10:00 pm. A nurse will call us tomorrow and come over if we need her, but we will get set up on a schedule next week.

We also enjoyed visits today from Ray & Lynda Grivetti and Miguel & Esta Rosario. Earl was very glad to see them, although I could tell he was tiring. After they left and we switched on the Cubs/White Sox game, (is that what they call it when it is a blow-out?) we BOTH had no problem going to sleep. I woke up when Deb called saying she would bring over the case of supplement, called Isosource. (I think I will just call it Food from now on; it actually says that on the can anyway.)

Our minister, Dave Byrum, had called a day or so ago to check on us, and then came over Thursday afternoon to visit. The three of us talked of many things, some things I had been afraid to say out loud until now. He spoke of God’s calming presence in a Sea of Chaos and prayed with us. Earl and I can feel the strength of the congregation and the love of God through Dave. Even though our Sunday attendance lately has left much to be desired, we know that God is with us all the way, and we will continue to take it “Day by Day”.

Home Sweet Home

2005-06-22T23:14:00.000-05:00

“There’s no place like home”
Late Monday morning, Earl’s cousin, Jeff Reinert, drove up to Rush & brought us home after Earl was discharged. Earl was very tired; it is amazing how just riding in a car can tire you out. He crashed out soon after we got home; I unpacked & sat down to go through a week’s worth of mail, but I soon realized how tired I was & also napped about 15 minutes. Katie was at her baby-sitting job and Jonathan was working. I am so proud of my children—they are hardly babies (19 & 16), but to step in and run the house (even if it was only a week)—Earl & I are so blessed. Some of you may not know the story—how we were unable to conceive for 12 years. I would pray, then curse, then cry. I have learned since that time, that God’s master plan is SO intricate, every minute detail has a purpose.

“To G or Not to G”
Before we left the hospital, Dr. Rodriguez had told Earl he wanted him to eat whatever he could and to drink the supplement 3 X a day. By Monday evening, even drinking the supplement was a chore. After the kids got home, I went to get his prescriptions (Norco, 10/325 [pain medicine] and Colace [stool softener]. The Pharmacist said the Norco could be chewed (as he was doing in the hospital), but the Colace was a gel caplet & had to be swallowed. After I explained the situation to the Pharmacist, she substituted a liquid for the gel caps. The Colace was so bad, it actually made him vomit, not something you really want to do a week after abdominal surgery. Needless to say, he refused to take anymore of it, opting instead for Milk of Magnesia. He also refused to eat anymore or use his tube. I told him if he gets weak from lack of nutrition, the whole operation will have been ENTIRELY for no reason. I am sure it is something that he feels makes him “less of a man” or maybe it is denial. Whatever, I am determined that he will use the tube tomorrow, if eating does not go well.

Tuesday morning, he decided he would like some Cream of Wheat, since the “stuff in the hospital was so God-awful”. After a few spoonfuls, he was unable to eat any more and had some water. By lunch time, he was finally willing to use his “G” tube. This was our first solo experience with his tube—kind of scary, but just to hear him say, “God, it feels good to have something in my stomach”, is what I needed to get over my weak knees.
The rest of the day’s calories consisted of Gatorade, chicken broth (maybe a couple noodles and carrot pieces), apple juice and another can of the 375 calorie Carnation Instant B’fast, that I had packed in my suitcase from his hospital food trays. (They would have thrown it out anyway, even in the can. He had been drinking the Boost before the operation, but it is only 250 calories.)
Earl’s Uncle Don came over unexpectedly in the afternoon and, after several hours of work, was able to get our computer up & running. We are grateful to him for that. I did several errands: delivering, mailing & faxing medical forms, buying additional plastic syringes for G-tube injection, & groceries.
Later on, we watched “Meet Me in St. Louis”, a gift from our dear friends and fellow Methodists, Bob & Pam Westfall. After the movie, I persuaded him to have the 2nd can of supplement, then we sat down to watch more of his Andy Griffith DVD. I must have dozed off, as I have so often in the past. When I woke up, I immediately thought, “we fell asleep again in the family room – we better get upstairs to bed, since we both have to get up early for work……and then total sadness came over me, when I realized, again, that this was NOT a bad dream from which I had just awakened.

Wednesday morning started promising, with Earl wanting poached eggs (“slimy”). I made him two; I think he got down less than one, and, later on, a mixed Instant B’fast, apple juice, a little homemade mashed potatoes & gravy, a couple ounces of broth, and Butter Pecan Ensure Plus in the G-tube. I have also started crushing his pain pill, mixing it with hot water & putting in the tube when room temp. He has to stay strong to enable him to take treatments when he is healed from the surgery.
It was such a beautiful morning – we sat on the back deck for quite a while. He asked me to fill his bird feeders, thistle in one and safflower seeds in the other. His birds are his 2nd passion (I would say music is his first). The above-average cost for these “special” seeds is justified as his only real “vice”. He then told me that he does not think he will want to go to Rush for chemo – that they would have the same drugs closer to home and the almost 3 hour round trip every time would be too tiring for him.
We then put an old step stool in the bathtub and he was able to sit & shower – he asked me to wash his hair.
Antoinette, the receptionist for Dr. Abrams, the radiation oncologist, called & gave us a July 6th appt. Dr. Abrams specializes in cancers of this type and has been at Rush for around a year, coming from Johns Hopkins. Earl said we can go & “see what he has to say”, but that we would also look in this area for a specialist. I may make him use that damn tube, but he has always had better instincts than I. I depend on him for so many things—to make the right choices. This will be the decision of his life.

My in-laws came over this afternoon and sat outside and talked with their son. I’m not sure if my mother-in-law realizes the gravity of Earl’s health, I hope not at this time. No parent should have to see their child suffer and she has already lost a daughter.

Several more people have called or sent e-mails or cards and Earl continually says that you just never know how many friends you have until you are in need. Thank you, again to everyone who has called, prayed, e-mailed, snail-mailed, or left a comment on the blog. Every one of them has a positive & uplifting effect.

Half empty or Half full?

2005-06-20T12:08:00.000-05:00

Those of you who know Earl, also know that he is one of the most positive people they have ever met. Probably much of that attitude has been formed by years, no, a LIFETIME, of battles. First was his battle to live, being born premature. Then, at age 2, was his battle with his appendix that had burst. Then, of course, was the battle of being (probably) the shortest kid in class, the shortest kid on the baseball team, the shortest boy who was asking taller girls to the Prom. He has the scars of IV's & the scars of an appendectomy, but the "scars" from his height have only made him stronger. (Oh yes, and he HAS the baseball trophies and Prom pictures)
He is convinced (at least in front of me) that he will beat this, and, I have to be too. I know that mental attitude has much to do with success; I learned that from my husband who is consistently towards the top producers at Aramark, as he was when he worked for Jay's Potato Chips. He knows that he can sell to his customers without being overbearing and pushy, and they respect him for that. I do not know anyone who does not admire & like him.
Which brings us to the age-old question: Why me, Lord? Very simply, we know that bad things happen to good people, and sometimes good things happen to bad people. I know that this has awakened our faith, as it does to many people in their darkest hours, and we know that God will only give us what we can handle.
On the day-to-day side, he still has eaten much less in two or three days as most people do at a normal meal, let alone Old Country Buffet. Even though the morphine drip has been out for 24 hours, things do not taste good to him. He says, "those eggs are nothing like yours" or "there is not even any color to that" (the Farina). I can't wait to get him home today and make something he can eat & likes.
I'm at the Rush Library again - it is quite a walk back to the room. I don't want to miss the discharge instructions. Earl's cousin, Jeff Reinert, is coming to drive us home. Jeff said he could probably also fix our "crashed" computer. Jeff is the one that dropped everything last year to build the Pergola over our deck before Jonathan's open house.

Thanks again for all the cards and e-mails from everyone. The kids brought cards to Earl yesterday when they came up. After they left, he looked at all the cards again. I had my back turned and I suddenly heard him cry. (probably only the 3rd time in 31 years). I turned & held him & told him we WILL get through this. He pretty much matter-of-factly said, "I know that" - "that is not why I am crying". He said he never realized so many people cared about him and were praying for him--all the offers of help, etc.
To him, this is just one more "battle".

Father's Day

2005-06-19T14:05:00.000-05:00

Today is Father's Day. A month ago, I had planned on making all of his favorite foods for each meal, and giving him his present (from me), complete seasons 1 & 2 of the Andy Griffith Show, His favorite show of all time. Instead, I am still here with him, depending on the Rush kitchen to give him something he can eat. My sister is bringing Jon & Katie up today; we thought he might go home today, but are staying until tomorrow.
On the positive side, he drank an entire can of Carnation Instant B'fast - slowly, but he was determined to do it. Before he had that, he wanted some tums or something--the Pepcid they have been giving him (a shot) has not been helping - he thinks it was making it worse. They ended up giving him some (generic) Milk of Magnesia (CORRECTION ON 06/22/05 - I meant to say Maalox, not Milk of Magnesia) - that seems to help and then he drank his supplement. He did not want to touch the Farina, or grape juice - he did have some coffee. They also sent up scrambled eggs & pumpkin ("punkin") bread; I tried to get some of that down. As much as I don't have an appetite, I know I have to eat something.
Also, early this morning, before b'fast, he wanted to walk in the hall for the first time without the IV wheelie. We walked down to the end of the hall and sat in the sun. The city is really beautiful from the 8th floor - the view to the east is gorgeous as the sun is coming up and magnificent after dark, in the wee hours I have sat there.
It is after noon here -- I will see if he is awake again. Another positive was the B. M. (2) - but it really (literally) took a lot out of him!
Maybe more later - the Rush Library is closed, but I am able to use computers on the 8th floor when the residents are not on them.

Waiter! Waiter.....

2005-06-18T14:34:00.000-05:00

I know every business (and a hospital is a business) has its problems, but you would think that one like this would get it's Shit Together. After both his lunch & dinner trays were wrong yesterday, we started to get pissed off. By the time he got something he could eat, he said he had lost his appetite.

Christian, a male nurse, came in later and said the doctor wanted him to have the liquid supplement in his G-tube, so he hooked it up, showing us all the way. He started it at 100 ml an hour, which apparently was a little too much for Earl to take. He got "full" after about half a can, and the infusion was stopped. Christian said it should be left hanging in the bag and, as long as it was used within 24 hours, it was "fine" -- they "do it all the time". He said the Kangaroo bag with the narrow line would "get clogged" if you don't "leave a couple inches in the bag". Now I am not a nurse or other health professional, but it doesn't take a rocket scientist to know you should not ingest dairy products after they have sat at room temp for several hours. I don't care if they are going directly to the stomach or down your throat. Anyway, a smart, black nurse came in about 4 hours later and threw it away.

We got back to sleep for a while, then were awakened again around 4:30 or so. I knew I would not be able to get back to sleep, so Earl & I were talking & discussing. Every now & then I would tear up (or worse) - he is so strong - and so posititve - even after our discussion yesterday afternoon with the medical oncologist (chemo). Dr. Villaflor asked us what exactly Dr. Warren had told us about Earl's condition. We told her. She asked if we had consulted an oncologist before the surgery & we told her no, that both Dr. Gupta & Dr. Warren felt that given the state of Earl's general health (good), the surgery would be the best option he had. With the swallowing problem that had developed so rapidly, he would have "gone downhill" much faster had he opted for treatments while not being able to eat. She asked what Dr. Warren had told us about surgery following the treatments. We told her that Warren had told us "that is not generally done," but that "he would NOT RULE THAT OUT." She excused herself, called Dr. Warren & talked to him again & came back in. She then, very carefully and much more thoroughly explained that, given the extent of the cancer (it is not only IN the esophagus, but on the outside, the pancreas & the bowel wall) that his condition is not curable or operable.
I heard the words she was saying, but it was like an out-of-body experience. I had been standing--my knees buckled slightly, and I started shaking. As I think about it now, I know that is what we knew on Tuesday, but Warren talked so round-about and it was not what we had thought we would be hearing.
She explained that she would be more than willing to have Earl as a patient - but trips to Rush might get to be too much - we talked alot. Chemo could not be started for at least 2 (closer to 3) weeks after surgery and then radiation would come after that. She talked about the "quality" of his life & extending it. He said he would just be happy to be able to eat again.

By 5am this morning, it seemed to us that since we were awake, and Earl has to go slow with eating, he might as well start now. The breakfast tray would not be here for 4 hours at the earliest. To make a long story short, he got about 4 ounces of supplement in (at a slower rate) before Dr. Rodriguez came in and said he only wanted him to have it once a day, so they took it out. Well, we waited, and waited, and waited, heard the breakfast trays, waited some more, until I again went into the hallway & caught the kitchen gal as she was leaving -- there was no tray for Earl. OK. OK. I explained the situation - had to call down for a tray, which finally arrived about 10:50. By that time, he had again "lost interest" and after about 3 spoonfuls of Farina, 2 spoons of mashed pears (which was supposed to have been applesauce), he drank about 6 ounces of 2% milk & said he was "full". I gave the nurse his Farina & grape juice which he had not drank, to put in the refrigerator for later, in case lunch is late, too.
He had been sitting in the chair (also, the bladder cath came out this morning) - one less "wire"
then decided to rest again. That is when I came here to update. I want to get back now.
Maybe more later.

Funny how we take "little" things for granted.

TGIF?

2005-06-17T17:43:00.000-05:00

Since Earl was able to "eat" almost the whole bowl of broth yesterday, the dr. suggested what they call a "mechanical soft" diet. So he got scrambled eggs, milk, & O. J. for breakfast today. He took about 1 1/2 bites of egg, 2 small sips of O. J. & said it did not even taste good & refused to eat any more. Ever since, he has been bringing up white, foamy, gassy bubbles (looks like soap-suds) and having to spit it out. He was very concerned; the nurse was not. I told him she would be concerned if the bubbles had any color or tinge of blood, but it does not. The nurse said that most likely, his bodily secretions are just really starting to flow again, after having been suppressed during surgery by drugs. Anyway, it is causing so much distress that he did not touch any of his lunch. Oh, the hiccups did not help either!

Dr. Ramirez was in this morning with the tall thorasic resident, Michael. He said that the epidural (pain med) would come out today and they would put him on a Morphine drip (that Earl can push for delivery up to every 8 minutes) and also a time-release (72 hr.) pain patch.
It took about 1 1/2 hours for the switch & for the medicine to start working, but he thinks it is better than the ultra-thin wire (?) tube that was implanted in his back.
After it was removed, I was able to give him a better sponge bath - I know that helped him feel better. His nurse told him he needed to get up & walk, so we went about 20 or 25 feet into the hall & back to the room. His belly hurt quite a bit, he said, but he needs to do that, as well as the breathing exercise. The difference between him and a normal surgery patient, is that his surgery did not cure what it was supposed to cure. He still has the cancer, and that is probably hindering his recovery because he still cannot eat.

We discussed this morning if he wanted me to stay or leave; he said that I am a big help & he was not sure what he would do if I were not there, so I decided to stay until Sunday. If he is released on Sunday, we will all go home together. If not, I will probably come home with my sister & kids after they come up for Father's Day and then play it by ear.

The kids are taking care of the cat & house; I explained (again) to Katie this morning on the phone how to wash a load of clothes. Other than that, they are fine.
Maybe more later.

Forms, forms....Not for me, but for the Other Guy

2005-06-16T23:20:00.000-05:00

June 16 (again)
I called Dr. Warren's office early this afternoon to make sure the forms I had taken to their office on Monday were ready to be picked up. She asked what time was I coming by? (a sure sign that she had not even started completing them). I asked what time does her office close; 5 pm; told her I would be there at 4:30. I went to the library to check over the forms - why didn't she put the procedure codes and the fee charged? It's a question on the form! I called her and had to hand-write in what she forgot to include. Then I cried--again--it is just so overwhelming sometimes--I try not to cry in front of Earl--although I did today (twice) -- he just says, "What's wrong?"-- I tell him menopause. I wish it were only that.

7:45 pm
After dinner (Earl finished almost all of his chicken broth & some of his coffee, but did not want to touch the jello, the fruit punch, or the lemon sorbet) we were watching Hoffa on TV, but nothing matters anymore, except this. It is ALL so insignificant. I then helped him with a couple of things, then told him I needed to go for a walk.
I will be going home on the South Shore tomorrow afternoon; Jonathan will pick me up at Dune Park. I need to copy & mail off the completed forms from Dr. Warren's office. I think I will send them registered mail on Saturday.
It is probably a good thing that I am leaving him for a day or so; I think the extent of his illness is starting to sink in to him and I believe he needs some time to be alone, without me fussing over every thing he does or does not eat and every mark he makes on the plastic breathing machine. We (the kids & my sister & bro-in-law) are planning on coming back up on Sunday for Father's Day; I will probably stay Sunday night & hope he is released on Monday or Tuesday.
I finally found the Chapel this evening. It is larger than most I have seen and is in the Kellogg building; it seems older than other buildings. I truly felt the presence of God in that chapel. Of course, I prayed for him to be healed, but I also prayed for the strength I am going to need in the next several days, weeks, months, and hopefully, years.

I keep thinking about people I have known with cancer; some lost & some won. Of course, we never think it will happen to us; it always happens to OTHER people. Somebody I once knew told me a long time ago: "You know that commercial that says 'Watch out for the Other Guy'? Well, I'M the Other Guy!" Anyone of us can become "the Other Guy."

Thank you again to everyone for your prayers. Please don't stop.

Afternoon update

2005-06-16T17:37:00.000-05:00

Not really a whole lot to update, except that Earl was able to eat just a little of broth, jello, sorbet. The same for breakfast & lunch. Lunch started out as a wrong tray, with pears, mashed potatoes and a hamburger with lettuce & tomato. I took it out to the nurse and she asked me if I wanted to eat it; they would just throw it away. It was 1:05, but I just don't have an appetite and I started crying & briefly explained. We are still waiting to see if an oncologist will be in today to talk to us. I hated to leave him to come here, but he knew I needed to take a walk. He actually felt like reading the paper.

Earl was in the chair again this afternoon, after I gave him a sponge bath, clean gown & clean bed sheets. (the nurses were busy & I needed something to do!)
Possibly more later. This library is open until midnite.

Lockhart - June Lockhart

2005-06-16T10:45:00.000-05:00

June 16
When I woke up this morning about 3am, it came to me - the last name of the actress that was Timmy's mom on Lassie. It seems very silly, but I have to try & think of anything else but what does and may lie ahead. I go to sleep trying to remember actors & actresses names, dates or titles of movies and words to songs. Anything to keep my mind off reality.

Dr. Warren came in yesterday to talk to us. I guess my first impression of him was a little generous; I'm sure he tries to tell it like it is without being too abrupt, but his bedside manner could probably use some sprucing up. However, I always said that I would rather have the better surgeon than the better speaker, and he is an excellent surgeon. I guess the mortality rate from this type of surgery is around 15%, but he assured us that there were no problems with his heart, lungs or any problems with inserting the G tube.
We asked about the oncologist - he will talk to Dr. Leslie who can coordinate the plans, but Earl has to heal from the surgery and probably cannot start any treatments for 2 weeks. He advised that the actual treatments can be taken at Porter; just like a Tylenol is a Tylenol anywhere in the U. S. The tumor had probably already spread when the CT scan was taken, but not everything is picked up on the scan. Also, the more agressive cancers actually respond better to the treatments than the slow growing ones. Dr. Warren said he would not rule out surgery if & when the tumor shrinks, but it is not usually done.
Some short notes:
Earl got up and sat in the chair for over an hour yesterday;
Breathing was better on the plastic machine they make him do every hour (to clear the lungs to avoid pneumonia (sp?);
He is going to get clear liquids today;
Has already had ice chips this morning;
Dr. Ramirez took off his long bandage on his belly;
The epidural infusion catheter (for pain) will, hopefully, come out on Friday;
The G tube in his left side will allow for additional nourishment and meds.
That is all I can think of now - will try & update later.
Thanks again to everyone for your prayers and notes. Also to Lynda Grivetti & Jeff Reinert for coming up to see Earl.

"The plans have changed"

2005-06-15T13:07:00.000-05:00

June 15, 2005
One of our very favorite movies to watch is MGM's glorious Technicolor musical, "Meet Me in St. Louis." This 1946 (?) gem with Judy Garland features several famous songs, "The Boy Next Door", "The Trolley Song", and, of course, "Have Yourself a Merry Little Christmas." My videotape actually broke from use, so I want to get the DVD version.

June 14
After we got Earl checked in, I went to the Smith Lounge (waiting area for family of surgical patients), got a cup of coffee and listened to the volunteer, Marilyn, merrily explain the rules of the Lounge. Since the actual employee that gives out the pagers to family was not there yet, I figured I might as well try to eat something. There are guilty feelings eating anything when I know my husband haves the problem he has, but Earl has told me several times over the past couple weeks, "don't be silly" and he would tell me now to "make good use of my time."
It was just after 7am when I returned to the Smith Lounge where I spoke to Marilyn who advised that the employee was still not there, so I wandered in to the Atrium. I then saw Rev. Dave Byrum coming toward me. We went to the au bon Pain Cafe' (what a name!) and talked about everything while he had some breakfast. I found out that Dave was able to be with Earl in pre-op, after I had to say goodbye. I know that meant a lot to Earl--it did to me.
After Dave left, I went back again to the Smith Lounge and received my pager--a big thing like they give you at restaurants--wandered around for a while, then met up with Earl's Mom & Dad and sister & bro-in-law in the lounge. Within another 30 min. or so, my sister, brother, and Jonathan & his girlfriend, Megan arrived.
We all talked and joked for awhile before Sandy, Jon & Megan decided to get something to eat. I showed them the way to the cafeteria (cheaper than Pain) and sat for several minutes but wanted to get back to the lounge. I had the pager with me and it had not started flashing; however, when I walked in the private waiting room (for large families) I found out that the esophagectomy had NOT been performed, since the cancer had spread.
The next several minutes is pretty fuzzy--I remeber saying over & over that the pager had not gone off, so the dr. could not have called & talked to anyone else--I'm his wife. I mumbled "this isn't happening" and left the room. I was numb and paced the hallway until my big brother, Jim, came & hugged me. I broke down and sobbed that this CAN'T happen to this GOOD man! Why isn't it happening to one of the many SCUMBAGS on the face of the earth! (Oh, I also found out later that Michael Jackson was "found" to be Not Guilty.)
The rest of the day alternated between numbness, sobbing and thinking (too much) and waiting. I spoke to the doctor the 2nd time he called the room. He repeated what he had told Dad earlier, also that the tumor had spread to the bowel, pancreas and some lymph nodes. A feeding tube had been inserted into his stomach to make sure he stayed strong for the upcoming chemo & radiation. He said the treatments could be given at Porter in Valpo to eliminate several trips to Rush.
I had remarked in an earlier post about the generosity of friends, but neglected to mention friends of friends, and even complete strangers. From the cleaning lady at 2 am who gave me a styro cup to sneak a cup of hot water for tea from the now-closed Smith Lounge, to Marianna's friend, Breann, a surgical intensive care nurse at Rush who was supposed to have Earl as a patient. When the major portion of his surgery was cancelled, he spent a few hours in recovery before going directly to his room on 8North. Breann not only called me Monday night at Marianna's and explained the (now cancelled) procedure and answered questions, but came down to the Smith Lounge in person, explained what she could, and gave me her work & cell numbers in case I wanted to talk to her. How can all of this be happenstance?
After Earl was settled in his room, we all got to go in & talk to him. I decided right there to sleep in his room; the hospital brought in a sleeper chair & linens. Everyone left, I made up the bed, talked to Earl (who was in & out) and I think I actually slept between 8:30 & 10:05. I was up most of the night (mostly writing this in longhand before I was able to get to the blog), silently crying in the closed Smith Lounge, sipping my contraband tea, or walking the hospital. I returned to the room and slept off & on between ~ 3:20 & 5:30. Marianna was coming at 8am to bring my clothes & things that I had left at her place, so long ago.
It is now almost 11am; I want to get back to my husband soon.

One of my favorite scenes (not as well remembered as Margaret O'Brien smashing the snowmen when they thought they were leaving St. Louis), is one before that, when Judy & her sister (was the actress Lucille Bremer?) were at the Christmas dance. The sisters were attempting to sabotage the dance for an out-of-town girl (June whats-her-name--Timmy's mom on Lassie) whom they thought was trying to steal Lucille's beau. When Lucille found out that was NOT the case, she advised Judy, who had just joined the group, that "The Plans Have Changed." Boy, have they.

When it rains........we do see a Rose......!

2005-06-11T13:36:00.000-05:00

I am constantly amazed at the generosity of friends. After I finally found and booked a Red Roof Inn room in Chicago for Monday night (at a modest $160), my friend Anne at work was talking to her daughter, Marianna, who is living in Chicago in a condo, less than 2 miles from Rush Medical Center. Marianna Rose, (whom I have known since BEFORE she was born, since Earl & I went to Anne & Bill's wedding 4 years prior) graciously offered to let Earl & I stay at her place. I don't like to impose, but Marianna insisted it was not an imposition and I know she means what she says. After the whirlwind of devastating events, this is comparable to the eye of the hurricane. I can also stay there Tuesday night and can go back up to the hospital on Wednesday. Thank God for miracles, friends, and serendipity.

Earl was able to get through Friday (his last workday for a while--it was very hot & humid) by drinking water, Boost & Powerade. I gave him cream of asparagus soup in a thermos (the last thing that most people want on a hot day), but its about all that will go down now. He ate about 2/3 of it. I'm planning a fantastic dinner tonight of home-simmered chicken noodle soup for him. Oh boy. One of our favorite TV channels used to be Food Network; now I avoid putting it on and watch the History channel instead.

Something else happened yesterday that would have had me in a total dither 4 weeks ago; now it is a (probably costly) minor irritation. Our Dell computer has suffered some type of crash; according to Dell, it was an automatic Microsoft update, which Microsoft has now allegedly discontinued. (Funny, I didn't see anything on the Microsoft web site about it) I was on the phone with Dell for approximately 62 minutes last night, after which the service tech told me I would have to have someone attempt to transfer our files from our hard drive, and then reinstall Windows. I don't even know where the Windows back-up CD is. Oh well, it will have to wait until some other time. I'm just lucky we bought my daughter a computer for Christmas and hers is apparently not affected. Funny how we come to depend on something that 5 or 10 years ago was a "luxury" and many people still don't embrace. If anyone knows of a reasonably-priced computer technician, please let me know.

Well, it is almost lunchtime; I have to make sure that Earl is attempting to eat. Oatmeal, which is his usual breakfast of choice, did "not even taste good" this morning; I think he ate about 4 bites. He is also having problems (with the "other" end) since he is not eating much and not enough fat, if you know what I mean. Maybe a broth-based soup for lunch will help the Metamucil work.

It is amazing how time goes so slowly at times like these, and so quickly at other times. Please remember to stop & smell the roses!

How many hotel rooms are in Chicago?

2005-06-09T14:50:00.000-05:00

June 9, 2005
Well, my phone calls yesterday and this morning have still not produced a reservation for Monday night. It seems there is at least one (I'm sure several more) huge convention in Chicago next week and the hotels that are the closest to Rush are all booked up. I really don't want to leave home at 2:30 am Tuesday to drive to the hospital by 5:00 am, but I will if I have to. (the first train out of Dune Park does not get to Van Buren St. until 5:38.) Our original plan called for us to take the South Shore up to the Loop on Monday afternoon, check-in to our hotel and go somewhere for a "nice bowl of soup", then hit the sack early and be at the hospital by 5am. I'm sure it would be less stressful for both of us, so I'm still working on it.

Katie made spaghetti & garlic bread for dinner last night; Earl was salivating when he walked in & smelled it, but after a gallant effort with approx. 2 T. of spaghetti on his plate, he then tried to eat the tuna noodle casserole that he had taken in his lunch box. I would say about 1/3 of that made it down, then it was on to the Boost. If it were not for those nutritional drinks like Ensure & Boost, I'm sure he would have lost more than the 15 lbs. he has already lost.

You know how after you buy a new car you always see several just like it? I never even knew it was possible to have this surgery and live to tell about it. Three of our friends (or family) have told us about at least one person they know who has had their esophagus removed. All are apparently adjusting to life after surgery. I think it would be a good idea for Earl to talk with these people, but he will have to make that decision himself.

Thanks again to everyone for your kind notes and your prayers.

The paper trail starts here.......

2005-06-08T14:55:00.000-05:00

We received the forms from our Western-Southern cancer policy, so whatever we get from them will be paid directly to us to help with whatever. When Earl started filling in the form last night, he said "well, if we did not have this policy, I wouldn't be having the operation." I immediately told him that of course you would, we have health insurance to cover most of the bills, etc. He said "no, I mean if we had cancelled this policy 3 months ago, as we almost did, I wouldn't be having the operation, because you would have KILLED me!" and we laughed.......
I made several calls this morning, to Aramark in South Bend, to Aetna, our health carrier, and to Dr. Warren's office. Marianne at the dr.'s office said they do not charge to complete the forms we will need for Earl's employer & for the insurance, so that is some good news. I've heard of other doctor's offices charging up to $20.00 for each form they complete.
I talked to Earl around 12:30; he said he is not having a good day today--tried to eat his tapioca pudding, but even that is getting difficult. It is so hot out today, he is drinking cold water & maybe that has something to do with it. He told me last night that it helps a little to eat when he is drinking something hot. Tuesday cannot come fast enough.

What's going on?

2005-06-07T23:56:00.000-05:00

I started this web-log to not only keep everyone informed, but to document events, timelines, and results for our records. I feel it is also faster & easier for everyone in this crazy race we call Life. Please never feel as though I am slighting anyone; the secretary in me just craves organization and this seemed like a good idea. If my grammar or spelling is off, please forgive me, as documentation is my second priority. My husband of 30 years, is my first.

Monday, May 9
Katie's 16th Birthday. Weekends have been crazy, so we decided to have her party tonight. Earl ate everything - lasagne, chicken tenders, cake, etc. No problems noted.

Tuesday - Wednesday, May 10 - 11
Symptoms of heartburn and possible gallbladder problems. Decided to visit a new doctor (Dr. Roscoe), since our health insurance through Aramark changed to Aetna from United Healthcare. Our family doctor of 13 years, Dr. Arjun Gupta, is no longer "on" our insurance. Office visits would be $90.00, compared to $20.00 for a contracted physician. Appointment was secured for Friday, May 13 (was this a bad sign?) 3:30 pm, with Dr. Roscoe. Started avoiding fat & spicy foods.

Friday, May 13
Earl's blood pressure medicine was changed by Dr. Roscoe. Samples for Lotrel (5/10) and Nexium were given. Another symptom, trouble swallowing (not in the throat, but feelings of food "getting stuck" and/or pain behind the breastbone) started to appear. Referral by Dr. Roscoe to Digestive Healthcare for an Endoscope was received. Digestive Healthcare closes at 3:00 pm on Friday and has no Saturday hours.

Saturday, May 14
Went to Applebee's for Katie's birthday dinner out. Earl's eating was slower than normal - still passed off as not much with which to be concerned.

Monday, May 16
Earl made appointment (first available) with Digestive Healthcare: Monday, June 6, 2005, 10:45 am.

Tuesday, May 17
Received papers in mail from Digestive Healthcare to be completed and returned on appointment day. Note attached to papers indicated this appointment would be "consultation only" - "no procedure will be performed". By this time, eating was becoming more difficult and we felt this needed more prompt attention.

Wednesday, May 18
I left Dr. Gupta's phone number for Earl to call (from his route). Dr. Gupta's office was able to have Earl come in that same day to see his associate, Dr. DeJoan. Dr. DeJoan ordered a barium X-ray, scheduled for Saturday. Diagnosis at this time was dysphagia (trouble swallowing.)

Saturday, May 21
We went to Porter Hosp. for the barium x-ray, after going first to have the routine blood tests (ordered on May 13 by Dr. Roscoe). Earl joked that since he had to fast, he might as well get both done in one day. We then went to Jimmie's Cafe for breakfast, and Earl ordered 3 pancakes, since he was "starving". He barely ate a 2" x 3" section, when he stopped & said he must have tried to eat "too fast" and had to go outside for a while. He was unable to eat anymore.

Monday, May 23
Dr. Gupta's office called on our voice mail - Earl needs to come to their office today by 5 p. m. to sign a form so Dr. Gupta can perform an Endoscopy test on Tuesday at Porter Hosp. I called Earl on his cell phone - he will try to be there by 5 p.m. Earl called me back while I was on my way home (between 4:30 & 5 pm) - he will be late, but he called the doctor's answering service & told them. I decided to go to Dr. Gupta's office myself to advise them - sure enough, when I arrived at 5:05, the answering service had not relayed the message to the office. Five minutes later, & they would have locked the door. Earl arrived about 5:20 to sign the form. The office employees are ALL very nice; I can't blame them for wanting to leave on time.

Tuesday, May 24
I went with Earl to Porter for the 7:00 am endoscopy, since "conscious sedation" is used. Specimens of a large mass in his lower esophagus were taken and sent to the lab.
Appointment for a CT scan was secured for the next day.

Wednesday, May 25
Went to Porter Hosp. for CT scan (with contrast) at 5:45 pm.

Thursday - Sunday, May 26 - 29
Eating actually improved (we found out later it was probably due to the biopsy). We splurged on $12.99 a pound beef filet on the grill for the Memorial Day weekend. Earl had intentions of eating every bite, but ended up getting only (less than) half down on Sunday.

Monday, May 30
We went to Earl's sister, Beverly's, house for a Memorial Day picnic. I made sure that I made a jello (red, white & blue) with mini-marshmallows being the only item in the jello. Bev had steaks and hotdogs & hamburgers. It was a long struggle for Earl to eat while trying to cover-up the situation until we knew more.

Tuesday, May 31
Appointment with Dr. Gupta for CT & biopsy results. Was informed that Earl has a malignant tumor approximately 5 cm (2") lengthwise in his esophagus. Dr. Gupta advised that surgery would be his "best" option, (if not his only) due to the location of the tumor and the speed of development; also, that there are some fine surgeons in Valparaiso, but it would be best to go to a "one-stop shop". I mentioned that Rush Medical Center (formerly Rush Pres. -St. Lukes) is on our Aetna Ins. plan. Dr. Gupta assured us that Rush is a world-class hospital, and he would make some calls and call us in the next 24-48 hours.

Wednesday, June 1
Earl kept appointment with Dr. Roscoe for review of his blood tests - 3:30.
I kept an appointment with Dr. Maria Sacris for my routine gyny check-up, which was also supposed to be a surgery consult for my much-needed hysterectomy, (which will have to wait!)
I called Elise Blake, our Western-Southern Life Ins. agent and told her we need to look into putting in a claim under our Cancer policy (which ironically enough, we almost cancelled just 3 months ago since the premium kept going up, but we kept it (call it woman's instict?) when we were advised we could reduce the premium by eliminating the "return of premium" rider. Elise advised she would be out of town until next Monday, taking a test, and would check on it and call us after Monday (June 6).
No call from Gupta's office.

Thursday, June 2
Approx. (~) 9:30 am: I called Dr. Gupta's office; Lori advised that the file is still on Dr.'s desk - he had a meeting yesterday.
~ 1:30 pm - I called again - got the answering service - she will fax a note to Lori.
~ 6:45 pm - Lori called us at home. Doctor is still working on this - we should know something by Friday, early.

Friday, June 3
I called Dr. Gupta's office ~ 9:40 am. L/m for Lori to call me.
~ 10:45, Lori called back with the name of the thoracic surgeon that Dr. Gupta has talked to. Dr. William H. Warren is at Rush Medical Center, Chicago campus. What would be a good time for an appointment? Told her as soon as possible - does not matter. I already talked to my boss and he assured me I could take whatever time I needed. (There are some advantages to working for the same family-owned business for almost 34 years.)
Lori offered to call Dr. Warren's office and make the appointment - she called me back and advised appointment is for Monday, June 6 at 3:15 pm. We should go to Porter to pick up the actual slides of Earl's biopsy and take them with us to Dr. Warren. We had previously picked up a CD from Porter that was supposed to have both the barium x-ray and the CT scan on it. (we found out at Dr. Warren's office that the barium x-ray was not on the CD).

Monday, June 6 (D-Day!)
It has been a long weekend (usually not the case). Earl & I took Katie to school (2nd to last day) and delivered all the materials and items I had at home that have to do with the Valparaiso Band Parents. I had e-mailed Dan (the Director of Bands) last week and informed him of the situation. Being President of the VBPA is not something I am going to be able to fulfill this year, with everything that is going on.
We also cancelled the appointment with Digestive Healthcare and did several other errands, among them: picked up the pathology slides at Porter and returned the guitar/mandolin scores of Children of Eden, which Earl was supposed to start rehearsing this month. It was actually a paying job, close to home (Memorial Opera House); he was really looking forward to it.
We ended up driving to Rush (something we won't do again), arrived early at the Medical Center, and found the doctor's office. We went in to drop off the reports, CD and slides and fill out any forms they needed. The receptionist, Esther, was very nice and suggested that we wait, as Dr. Warren was seeing old (previous) patients and did not have to spend as much time with them as he spends with a new patient. Her recommendation worked; we actually got in to the Dr.'s office around 1:30, 1 hr. & 45 min. early.
Dr. Warren was very down-to-earth & personable. He recalled speaking with Dr. Gupta and reviewed all the reports that we had brought with us. I advised him we had also brought the CD with copies of the barium x-ray and the CT scan-- he excused himself to go & "look at the pictures" on a computer in another office. He returned a short time later, stated that the barium x-ray was not on the CD and immediately called Dr. Gupta's office and asked them to fax the copy of the barium report ASAP.
Dr. Warren explained that since this tumor appears to be contained within the esophagus and does not appear to have spread to other regions, the best course of action is surgery, with removal of the esophagus (with the exception of a short piece at the top). The stomach would then be stretched up and attached, in essence, making a new esophagus. Earl's future daily routine would consist of several (6-8) meals a day, instead of 3 large ones. (We never liked buffets anyway!) The operation takes 4 to 6 hours, there will be a week's stay in the hospital, and at least 6-8 weeks of recovery. The earliest opening for surgery was scheduled for Thursday, June 16 and Earl signed the consent form. We were then sent up to the 11th floor and Earl was given an EKG in preparation for the operation. We went back to Dr. Warren's office, were given a copy of the barium test report that had been faxed by Dr. Gupta's office and we left.
We went to the cafeteria and attempted to eat something (it was after 3pm at this point); (thank God for tomato soup!) then left for home. We arrived home after 5 pm, and discovered that Dr. Warren had called on our voice mail and left a message that he had a cancellation and that Earl could be scheduled for Tues., June 14 and to call him back to confirm. Earl called & talked directly to Dr. Warren and confirmed the surgery for Tuesday.

This is basically all the information we have to this point; I still feel that I will wake up and it will all be a horrible dream. When I think that just 30 days ago I would fret over dust bunnies or piles of laundry, then something like this happens and it is akin to being hit with a bucket of ice water, a bolt of lightning, and a Mack truck, all at the same time.

I will try as best I can to keep this journal current for anyone who is interested. Now everyone go & kiss your spouse, your kids, or whoever is closest to your heart. Remember what is TRULY important.