Trying to Keep Things Normal

My mom saved a lot of items while I was sick. 
Here is the note from my Dr. that allowed us to get a handicapped parking pass.

OK, so the excuse for the long break between posts this time is....I am typing this on basically a completely new computer.  After a complete overhaul, our computer is back and so am I....

As we moved toward the middle and end of May, my birthday was approaching.  On May 22nd I turned 8 and celebrated the first of two birthdays I would have on Chemotherapy.  My mom continually strived to keep life as normal as possible.  We spent a lot of time with family in Miles City and she signed me up for swimming lessons.  Sick or not she was keeping things moving forward, and she could at least scratch the chance of me drowning, off the list...

Road Trip

Boulder Little League, Billings, MT.  T-Ball. I played P/1B which should tell you something about my t-ball skills
back in the day.

One of the best memories I have during the time I was sick was going to my first Major League Baseball game in Seattle.  As a young kid I liked the New York Yankees.  They were good in the late '70's and early 80's, so I was on the bandwagon.  I was also a Reggie Jackson fan as he hit a lot of home runs.  Through some family connections to MLB scouts, I was able to get a baseball signed by the 1981 Yankees when we went to see them play the Mariners in May of 1981.  Jackson hit a home run during the series and for a brief couple days we put Cancer behind us and enjoyed life.

One Tube Out, Another Tube In

My brother Tim's 5th birthday, October 1981. 

Sorry for the delay in blog updates.  I was hoping to keep the breaks short, but life got in the way of that. So back to the shit sandwich we are plowing through.....

With May about to begin, I was nearing my 8th birthday on the 22nd.  My super pubic cath was now out.  Radiation was complete and my skin was healing.  The tumors were not visible any longer under x-ray and it seemed we had passed the first test and turned the corner. 

Highs and Lows...

Here comes trouble......15 months old, summer '74. 

Now we were nearing the end of April and enough time had elapsed to allow for positive results.  There was no question the radiation had reduced the tumors significantly.  Coupled with the chemotherapy, hope was increasing that this battle would end with a victory for life.  The 22 lung tumors were not visible now and the softball sized prostate tumor was disappearing.  It was time to take a look inside and I had a cystoscopy to examine my prostate.  Good news would come from the procedure.  The problem was the side effects were still terrible and I continued to lose weight.  Four months earlier I was riddled with cancer, but looked and felt healthy.  Now the cancer was taking a beating, but I looked like the walking dead.

Turkey's Done

My 3rd or 4th birthday and a much happier time.  My mom loaded that cake with candles, which had me mesmerized.

Finally the end was in sight for my radiation treatment.  It ended not a moment too soon as the symptoms and pain were reaching a breaking point.  At this stage of treatment I had morphed into a red tomato that could hardly walk.  The chemotherapy drug Vincristine was giving me multiple side effects.  The common side effects were expected.  I had hair loss, low blood counts, weight loss, nausea, vomiting, mouth sores, taste changes, and digestive problems.  The less common problem that occurred, put a halt to the drug, as I began to experience peripheral neuropathy. 

In the Trenches

Hey I grew up in Montana.....we pack heat and wear plaid pants!

So now the war was really on.  As April of 1981 arrived my symptoms from the radiation and chemo continued to become more severe.  I continued to lose more and more weight and my blood counts began to worsen every time they were tested. 

Nights became eventful as I was not sleeping well and usually up multiple times with pain or digestive system problems.  We were only three months in, but the emotional toll was beginning to hit all of us and it became pretty clear, this is really going to be awful.

These next journal entries are some very rough days and nights.

Some Good, Some Bad

My mom's younger brother Tom played baseball for the University of Wyoming in college.  I got to go with her and my grandparents on a month long road trip with the team when I was five.  They let me be their bat boy.  This pic was taken March 16, 1979 at UCSD.  Wyoming won.  The posts below are from March 1981 and a much different time.

As spring of 1981 arrived progress was being made in two areas.  The radiation and chemotherapy was attacking and having a positive impact against the cancer (as you will read in my mom's journal entries from this post) and my side effects from the radiation and chemotherapy were getting worse.  During the radiation and chemo combo, I felt the weakest most tired of the two year battle.  The nausea was getting severe and became very frequent.  It was common for me to throw up 10-20 times per day.  As I began to vomit gastric juices, I added a steady diet of cherry kool-aid.  I was going to puke a couple times per hour and kool-aid is a lot better coming back up than acid.

Baby Steps

July 2nd, 1977, I was a ring bearer at my Uncle Chuck's wedding.  Had to add this pic, the tuxes are sweet. 
The original "dumb and dumber" tux!

Radiation started again March 18th after a one day break.  I was nearing the end of the radiation treatments I would receive on my lungs, 13 total.  It was great to end one stage of the radiation and it also marked a step forward toward the end of my treatment.  First to complete would be the lung radiation, then radiation completely, and finally the chemotherapy.  It was really the best way to handle this process, break it into smaller segments and knock off one at a time.  The radiation on my lungs left me with small scars in the middle of my back.

Back to Work

My mom (28) , brother Tim (2 1/2), and me (6) on a horse outside Billings, MT or maybe that is just a very large dog. 
Summer of 1979

With a one day break from radiation it was back to work as usual the next day.  I was quickly developing some skin damage and it would not be long until my skin would begin to peel.  Getting a sunburn on your shoulders or back is never enjoyable, but getting one on your genitals, is as bad as it gets.  With a tumor based in my prostate though, there was no way around some rough side effects, as I was receiving blanket radiation from my upper thighs to the base of my neck.

My Tanning Bed

My dad has always had motorcycles and even though I wasn't doing much riding when this was taken, my brother Tim and I sat on the bikes a lot.  This was a BMW he had for a while. 

With February  of '81 coming to an end, it was time for my radiation treatments to begin. Taking chemotherapy is bad enough, but when you add blanket radiation to the mix, you move toward physical torture.  I had six weeks of radiation that began on Monday, March 2nd, 1981.  It's also the same day that Jon Bon Jovi turned 19, in case you wondered.

Progress

With my brother Tim in June 1978 on the "poof" as we called it.  I spent most of my entire day on the "poof"
when I was home and sick.

Just over a month into my treatment, positive progress was taking place.  I continued to feel worse in many ways and looked more unhealthy as time went by, but the chemotherapy was killing cancer cells.  More and more of my hair was falling out and I added a wig for a time.  I always wore a baseball hat though, as the wig just looked weird and fake.  It itched like crazy and I remember one day at school just scrapping the whole program and going commando you could say.  For the rest of my treatment (22 months) I went bald everyday. 

A Cup of Coffee in the 2nd Grade

Thirty years later I have three girls (l-r) Katelyn (7), Allie (9), Shannon (7).  Katelyn and Shannon are fraternal twins. Sept. 2010

After some pretty stellar attendance my first year and a half of grade school, the second half of second grade, ruined my attendance run.  I missed a lot of school from January through May of 1981.  Even when I was in attendance, how much schooling I was absorbing was a good question.  It's hard enough to focus when you are seven and sitting at a desk, but when you are sick, tired, in pain, or checking to see when you need to drain your catheter bag, it's nearly impossible.

A Rotten Routine

Here is the journal my mom kept and the two pages I have been writing from. 

After what was a crazy first week it was time to settle into the routine of a new life, one with cancer.  I will try to cover all the main points my mom wrote in her journal, but I plan to exclude some very repetitive excerpts.  Remember her journal was written in a way to briefly describe my situation and how I was doing, but went into exact detail of what went into and out of my body.  What that means is everything I ate and drank to the ounce. What medicine was administered, blood counts, bathroom trips, how many, and how often.  I don't feel it will be necessary to cover every time I have a "bowel movement" as she does in the journal.  Just know it was covered, daily.