Java Jive

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

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

“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?

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

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.....

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?

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

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

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

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"

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......!

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?

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.......

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?

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.