Sunday, August 16, 2009

Essay by Rex: January 2005

I correspond with a sister missionary I served with in Hawaii in the early 1970s. She is in the last months of battling a form of thyroid cancer. She's 52 , lives in Salt Lake and just got her youngest son off on a mission last Sept. This is a recent email to her.
We've had many discussions, a couple about whether it's a good idea to have our missionaries come home for funerals if things got to that point. That issue has been brought home to me since my middle daughter, Aubrey left to serve in the Ohio, Cincinnati Mission in December. Since I had a close call in September, I told Aubrey I didn't think her coming home would do any real good, would only serve to be a disruption in her momentum as a missionary and who knows maybe I'd get to see her some way anyway.
Aubrey's parting words to me were that I had to live at least 19 months so we could see each other after her mission. I laughed and told her I'd try and work that into my schedule for 2006. We had a wonderful time visiting before she left to enter the MTC.
I suspect I may have many years ahead of me. Some, miserable and some not. My attitude will be the key. Three wonderful daughters to do home repairs for down the road and unfinished genealogy could keep me here into my eighties.

Rex

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Dear Rene',

Thought I'd 'return and report' and otherwise check in to see how you are doing. Hope you are enduring things well. Since you and your husband decided against the surgeries and anymore chemo or radiation, how are you dealing with the pain factor? Is it still in the tolerable stage? Are you staying home or are you in and out of the hospital? Is your son serving his mission, dealing well with the uncertainty of the news?

It's interesting for me that there is no relief with morphine. When Demerol was administered I accused the nursing staff of 'trying' a placebo to see if it would help instead. Several injections made no difference. I literally felt no change. Funny that the best relief I get is Vicoden and it just takes the edge off.

I entered the hospital for more chemo on the 27th of Dec. Was there until late Thursday night (9:30 PM) on the 30th. It was the roughest experience yet. The nausea was greater than ever, almost never letting up. My roommate, this time, had a different type of lymphoma and was getting a different regimen of chemo treatment. When it was meal time and the trays were brought in, he'd start right in, eating. Unfortunately, the smell from his food drove me out of the room into the hospital hallway just to get away from it. I'd get up and unplug the pump administering the chemo to me and roll the chrome stand with the plastic bags hanging from it out the door and down the hall away from the rooms. Amazing how far the stink of food will travel.

I'd push my tray away and let them take it back. Even when the anti-nausea drug was given to me it took a couple hours to feel the waves of nausea disappear. I think I picked at 3 or 4 meals in 4 days. Scrambled eggs could sometimes go down. Jello worked. And water.

Cups of coffee is a regular staple on the meal trays. Never touched it but finally thought a cup of hot chocolate might go down. I requested some on my meal order. When it arrived, there on my tray was an individual foil packet of cocoa. No hot water. No cup. That's the catholics for you. Small "c" intentional, out of respect, of course.

At least one meal a day and sometimes two meals a day has a big, steaming pile of peas on the plate ... usually spilled all over the other food items on the plate. Who serves peas for lunch? They do here. I've even been served peas on the plate with a side bowl of split pea soup or more often: veggie soup with more than a fair share of peas (I'm not kidding).
I hate peas. I've always hated peas. I'm 50 years old and I don't have to eat peas. I'm beginning to think that all those peas and lima beans my parents forced me to eat as a child may be the cause of lymphoma.

I think the catholics believe there are some curative powers in the consumption of peas. As often as peas are served, I can just imagine the loading dock at the St. Joseph's Medical Center kitchen facility. I visualize dump trucks backing up to the dock, unloading. I picture pallets, dozens of them, setting at the dock with 55 gallon drums of peas, maybe even stacked one on top of another.
I picture the kitchen help who look like Oompa Loompas (from Willy Wonka fame) driving forklifts around moving incoming shipments of peas.
Oompa Loompas, wearing respirators, safety glasses, rubber aprons, rubber gloves and hip high rubber boots are hacking the tops of the 55 gal. drums off with fireman axes and shoveling peas into stainless steel wheelbarrows. Other kitchen helpers (also Oompa Loompas) wheel the peas inside and dump them into huge vats where they are super heated to get the most out of the taste and smell.
I visualize a long service counter where more funny looking help is lined up using shovels the size used to clean out ashes in a fireplace. They are scooping big individual sized steaming piles of peas onto plates set on serving trays.
Once the peas are loaded on the plates, then the kitchen help (can you picture them?) start to see what else is supposed to be on the menu. Sometimes there's a lot. Sometimes, there's not. Since the plates are two-thirds full of peas, there is a much smaller crew finishing the plates off with condiments, etc.

One of the specialties in the dessert dept. is a biscuit, sliced in half with a piece of canned fruit on it. My description is not an exaggeration. A real biscuit. Maybe a small peach half, maybe a pear half. The top of the biscuit is positioned on top. No imagination. Barely any flavor. No real attempt to trick patients into believing it's a real honest attempt to create a dessert. After a couple of days of this kind of food service I checked the window in my room. It was bolted closed. Every one of the 7 rooms I've been in since has been bolted shut. Believe me, I've checked.
I'm certain that previous patients had attempted to escape and the maintenance dept. worked overtime to secure the facility. If there was a mass escape and everyone left ... what would they do with all those peas?

Part of this hospital building is actually 100 years old. The walls are too thick to even allow me to listen to most radio stations. The one station I can receive well is the International Catholic Radio Network. Another station I can tune in is some Jesus Saves christian station. It is a labor for me to keep a religious attitude when this stuff is being presented.


I was released on the evening of the 30th of Dec. On New Year's Eve and for the next week my life consisted of sleeping, reading, napping at my shop and one trip to the cancer clinic to get an expensive injection of Neulasta to hopefully boost my blood counts so I could fight off infections.

On Friday eve, January 7th I drove to the mountains to visit my Mom for the weekend. Figured I'd attend Sacrament with my Mom, then drive back to the valley and attend my ward in Modesto. I had big plans to get some organizing done at my shop during the week. I could work a bit, nap a bit and make the most of what was supposed to be my best week, energywise in between treatments. I was scheduled to have my last week of chemo treatment starting on the 17th of Jan.

My visit with my Mom didn't go as planned. The expected energy wasn't there. I mostly slept and Saturday night / Sunday morning was awful. I was hot, cold, sweaty and boils or other types of skin eruptions were showing up all over my body. Bruises appeared all over. Looked like I had been worked over in a street fight. Sunday evening my temperature went to 105 degrees. My Mom drove me to the local hospital ER where blood was drawn (twice to make sure) and the ER Dr. said a normal persons' white blood cell count should be in the 250,000 range. Mine was at 4000 and I needed to be hospitalized. Like in September, I had another infection that was going to take me down fast. I needed a megadose of antibiotics and a blood transfusion.
The ER Dr. said they could help with the antibiotic (which they did) but I needed a transfusion of irradiated plasma and there wasn't any in the county. The only oncologist in the county refused to see me considering my poor condition. I didn't blame him a bit. A ride by ambulance to the hospital 75 miles where the staff and info was available was my best option.
I arrived at the hospital in Stockton at almost 2 AM Monday morning. I was immediately put in isolation and for the next 2 days didn't see a human face. Just people with masks and gloves. My diet was highly restricted to some basic overcooked stuff. Sadly, peas were not restricted. In four days I received 3 plasma transfusions and loads of antibiotics every 4 hours.
I asked for a toothbrush and was refused. A brush could cause injury to the gums and create more trouble with infection. I was given a stick with a sponge on it soaked with an antibiotic agent to brush. Much care was given to the boils that had appeared. I was surprised how quickly they reversed themselves and disappeared. Now, a few days after leaving the hospital the boils are no more than scabs.
Tuesday evening, two very good friends, Rick Fairbanks and Roger Hoskins gave me a priesthood blessing. I enjoyed their visit.
Wednesday, I noticed my breathing was changing. There was an ache in my left lung and a gurgling sound as I breathed. The beginning of pneumonia. My oncologist was on vacation and out of the country but his business partner Dr. Dighi filled in very well. He said I could go home on Thursday after an afternoon dose of antibiotic. I was hoping the next round of chemo would be postponed for a week or so but Dr. Dighi said I could come back, as scheduled for the chemo plus they could keep a better eye on me for other side effects.

So, since the first week of December 2004 thru the end of my last scheduled chemotherapy treatment totaling 55 days, 21 of those days I've been in the hospital. A number of the days I've been out of the hospital have been spent driving to Dr. appointments or to labs for blood draws. I'm afraid to try to total the days in or out of the hospital since June when I started this rollercoaster ride called chemotherapy.

It's tempting to say something about being glad I followed the Word of Wisdom all these years so I could enjoy good health during my "golden years" but I won't. I'm not sure I'll live to see the 'golden years'.

I guess if, after the bone marrow rescue and transplant I recover to a fairly normal existence, I will consider this all worth it. That is, if I can enjoy a decade or so of fair health. If, on the other hand, this treatment only grinds me down and finishes me off in a couple years even with the additional need for maintenance chemo, I'll consider the experiment / gamble a failure. I'll just chalk it up to the fact that everyone is going to die from something and this happens to be the hand I was dealt. Just the normal chances I took when I agreed to this mortal life. I guess going out early with a disease is better than hanging around 2 to ten years in a rest home, unaware of anything around me like some people. Yeah, I may not like the status quo but it could be much worse. Besides, what really seems unfair is when I see the occasional four or five year old with no hair at the cancer clinic.

At least I've been able to see my kids to adulthood. A couple of friends of mine didn't even get that.

Rene', sorry if this letter seems 'down' ... it wasn't really meant to be. I genuinely hope that whatever time you have left with your family can be enjoyable, relatively pain free and you'll be able to reflect on the good experiences in your life. Ultimately, we do have a better day ahead once this mortal probation is over. At least we have that confidence.

Take care and hope to hear from you soon,

Rex

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