"Finding Chemo"

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...........

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...."

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........"

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 -?

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

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.