February 2006

Date: Wed, 1 Feb 2006
Subject:: chemotherapy - day 1

I've just returned from my first treatment and, oddly enough, I feel fine. My friends, Dave and Sandy Cooper, took me to Kaiser Hospital and sat with me, got me lunch and candy bars and just provided support and conversation. I have no nausea and still have all of the hair that I had when I went in. I'm not certain when those side-effects begin to manifest themselves. A nurse said that nausea may set in later tonight, but more likely in a couple more days, if at all. Apparently there are some people who have little or no problem with nausea with today's chemotherapy and anti-nausea drugs. I'm not clear on whether hair loss is gradual or sudden, but from the info-pages provided to me it is certain.

As strange as this sounds, I feel a little bit let-down. I went in there ready to fight, ready to overcome the awful effects of a treatment delicately balanced at the point of poisoning me just enough to kill the faulty cells without killing me and I even had my support team in place. So walking out of the hospital feeling pretty much like I felt going in is kind of anti-climactic, like calling the big game in the 3rd inning due to rain. Don't get me wrong though, it's not disappointment that I feel, it's more like I'm all dressed up with nowhere to go. I almost feel guilty about Dave and Sandy wasting 5 hours sitting in such an unpleasant place, though I would not have been able to send them home if I had tried, their dedication is absolute. I will be returning to their house shortly, and stay for the evening. I have shorter appointments tomorrow and Friday and they insist that I will not have to drive or sit there alone. I'm not certain what I did to deserve such good friends.

Thank you all for your thoughts and prayers. I will keep you all posted as things progress.

Tom

Date: Thu, 2 Feb 2006
Subject: chemotherapy - day 2

Still feeling strangely well, but I'm told it sort of creeps up on you as your body gets beat up from the poisoning.

Still feeling slightly over-prepared but trying not to get complacent and stop following directions because I know it will come back to bite me eventually.

Thanks to all for your continued support and encouragement!

Tom

To: Tom
From: Jan
Date: February 2, 2006

Tom,

I can’t tell you how relieved I am to hear that you have dedicated friends to be with you.

Jan

To: Tom
From: Eric
Date: 2/2/06

How'd you get such good friends? Thanks for continuing to send
updates... I've learned a lot in the past couple weeks.
-Eric

To: Tom
From: Steve
Date: February 2, 2006

Tom,

Glad to hear the first session went well. Stand by for later sessions though, right now your body is probably resilient enough to handle the first session(s) reasonably well, but as your body gets beat up it doesn’t fight/bounce back quite as quickly. But everybody is different and I hope you have a smooth flight through this.

The hair thing is interesting. My dad has/had very thick hair before chemo, so when it started to go it came out in clumps. In fact he came to joke about it with my brother. “Hey come look at this!” and he would grab a wad of hair out and laugh it off. Now his hair is back, not quite as thick, but I think I mentioned that it is a little darker now. Who knows, the human body is a strange beast.

Give my best to Dave and Sandy, they are truly a gift.

Steve

To: Tom
From: Kaustuv
Date: February 3, 2006

Tom,

I have not replied to you for a while but we (Kate and I) have been reading all your mails and wishing you the best. I don't know how it feels because I have not in your shoes but please hang in there. Kate has been very inspired by all your stories - she says she wanted to do all those things all her life but never acted on it. One of these days, very soon, she will start writing directly to you. I myself feel very strongly that there has been no adventure in my life, although my friends disagree, and I still harbor the hope of plunging into something like that some time in my life.

Again, thank you for sharing and wishing you nothing but the very best,

Kaustuv

Date: Mon, 6 Feb 2006
Subject: progress

The effects chemotherapy are building up as my body gets beaten up, I guess. I've been experiencing not so much the nausea but the lack of appetite that I've heard about. I'm also tired all of the time and sleep for 12 - 16 hours a day, but I do it in 1 or 2 hour sessions. I can't seem to get comfortable, but it's not from anything external, like a chair or bed, it's just inside me. I go to bed now between 6:00 and 8:00 PM and sleep 1 or 2 hours, then wake up to toss and turn, sometimes get up and walk to another room, them back to bed to sleep for another hour. It's really quite annoying but at least I'm not in any real pain.

My advise on using this chemical compound would be to avoid it if at all possible. *grin*

I go in for a bone scan and MRI next week. The outcome will help the doc decide whether to zap me with radiation too. I have no preference, I just want to get through this.

Still hangin' tough (as possible),

Tom

To: Tom
From: Jose
Date: February 6, 2006

Hi Tom! I heard from Joe ______ your condition and I just want to say that I'm praying for you, for your speedy recovery. Take care and hope to see you soon!

Jose

To: Tom
From: Jane
Date: February 9, 2006

Hi ya,

Just a quick note to tell you that my thoughts and prayers are with you daily as your proceed through your treatments. Knowing first hand, what you are dealing with, it still makes my stomach queasy just to think about it. And typical of your awesome story telling, you put us right there with you. And for most of my personal experience, I was so frightened, I imagined it to be an "out of body" experience and didn't share my thoughts with anyone.

Stay positive
Keep in touch,

Love you,
Jane

To: Bro
From: Tom
Date: February 12, 2006

What did Grandpa Macom do for a living?
What else do we know for sure about his life?

I only remember that he cleaned his ears, very deeply, with sharp
things. It kinda scared me as a very young child.

Tom

To: Tom
From: Bro
Date: February 12, 2006

Granddad - George Clark Macom - born in 1867 - Dad thinks he may have been
born in 1865. His headstone says 1865.
First worked at Standard Oil -- Oil wagon - deliveries.
J.C. McCready Ice & Coal - Drove Ice wagon (horses) for 35 years.
Company located on
Croton Ave.
Lehigh Portland Cement - Towards Harlansburg on Rt ? - Was a
millright. Worked there until the great depression. (Walked to and from
work -- East Main Street)
During WW II worked for a year at Douds Bros Machine shop.
After WW II worked at Camp Reynolds tearing down buildings. (I can
remember when he worked there - he continued to work into his late 70's or early 80's)

Was married twice
First marriage to a woman whose name was Etta Fox. No children. She
died very young.
Second marriage to Margaret Dombart - she was 15 yrs younger - died
in her early 50's - heart problems.

Buried in Harlansburg - church cemetary.

To: Family
From: Tom
Date: February 12, 2006

[This is one message extracted from several concerning family background]

Grandpa Wright lived in Canada for a while under indentured servitude to pay for his immigration. The only other thing I remember about that period was that he used to have to hide books (under the root of a tree, I think)
because his 'master' forbid him to read.

To: Tom
From: Jim
Date: February 12, 2006

Tom:
It was very nice reading this e-mail and I hope you do find God and his
friendship and healing power. Answers are not always the way you want
them but He will answer you! Remember your Mother and Father were
believers. It use to be when Sally and I went up to New Castle in the
later years of your Father' life I would go with him to Church and Sally would
go with Thelma to her Church. He had a great faith even though he did
not appreciate the way the "Church" was run. He would go up on Mondays
and count the money with others and take it to the bank. Christians are
no different than the Christians of old in that they do wrong often,
however we can come back to God and ask for forgiveness and receive it.

Christians do suffer, remember, I was only 45 when I had my first heart
problem and surgery. At that time they felt you may receive three to
five years without problems and very likely death by then. I was very
afraid I would not see my children grow up. With many people praying for
me I now I have seen my grandchildren and will be 77 this July. I have
by-passes around my by-passes with the second heart surgery in 2000. I
help build handicap ramps and do other projects through Social Services.
The Lord has been good to me!

We watch for each e-mail from you and pray daily that you will come
through this and be ok. Look at your Uncle Gene! I am sure he told you
about his travels through life since his bout with cancer. He has been
very courageous and a real model in my life. I have been with him when I
was not sure he would come through with both the heart and cancer.

With our love to you we are your Uncle and Aunt. Jim & Sally

To: Tom
From: Josef
Date: February 15, 2006

Hi Tom

I don't know how you go t started smoking but I know a little bit about
what you are feeling. My wife stopped smoking over 20 years ago -- then
started again several years back. Just at work and then just at work and
occasionally with her friends. Gradually increased and she'd duck out the
back door a couple times a night to have one. I made the mistake of trying
it -- my excuse was that it was a time we could be alone and talk and those
didn't seem very frequent ... anyway I smoked for over a year and finally
quit about two months ago. Over the winter I had the nastiest cough I've
ever had -- but I kept smoking ... I don't know why we do the things we do.
Some of them make no sense. I am done with it and I agree it's not worth
the damage it does or the risk of worse damage.

I hope things work out. You seem to have the right attitude about it.

Joe

Date: Wed, 22 Feb 2006
Subject: Chemo Session 2, day 1

I began this session by having a meeting with my doctor to discuss the results of the various tests I had over the last 2 weeks. The news is all quite positive and the prognosis is as good as it gets.

The bone scan and brain scans show no indication of any other tumors which leads my doctor to call my cancer "limited" stage. My particular type of cancer has only two stages and limited is the better of them. It means that I fall into the category of cancer patients with the highest odds of survival.

The blood test I had yesterday indicates that my immune system has rebounded nicely since the last sessions, which is what I hoped for as a battered immune system creates a very real secondary danger of picking up a life-threatening infection or disease and being unable to fight it off.

Along with all of this good news comes some less desirable news. I will soon begin getting radiation treatments to supplement the chemotherapy. They will be every day and I don't yet know the duration nor anything else about them until I meet with a specialist in that field. Thanks to the Hiroshima, Nagasaki and the Cold War, I grew up with a great fear of radiation, but I'll try to think of it in terms of my friend, the microwave oven, helping to 'cook' the abnormal cells out of my body, instead of associating it The Bomb.

In my initial meeting with my doctor I somehow got the treatment schedule backwards. The treatments will last for 6 months and the recovery period will encompass 3 months instead of the other way around. This realization is probably the biggest blow to my attitude, but I'll get through it.

Date: Mon, 6 Feb 2006
Subject: progress

The effects chemotherapy are building up as my body gets beaten up, I guess. I've been experiencing not so much the nausea but the lack of appetite that I've heard about. I'm also tired all of the time and sleep for 12 - 16 hours a day, but I do it in 1 or 2 hour sessions. I can't seem to get comfortable, but it's not from anything external, like a chair or bed, it's just inside me. I go to bed now between 6:00 and 8:00 PM and sleep 1 or 2 hours, then wake up to toss and turn, sometimes get up and walk to another room, them back to bed to sleep for another hour. It's really quite annoying but at least I'm not in any real pain.

My advise on using this chemical compound would be to avoid it if at all possible. *grin*

I go in for a bone scan and MRI next week. The outcome will help the doc decide whether to zap me with radiation too. I have no preference, I just want to get through this.

Still hangin' tough (as possible),

Tom

To: Tom
From: Steve
Date: Februray 7, 2006

Tom,

Well, sleeping in fits and starts is a pain. My dad became quite irritable during that process. Are you able to get any sleeping drugs? So the bone scan is checking for metastases and then more time to think and wonder. This is quite a test of courage and resolve. I think you doing great with that aspect. I know the appetite is low but try to consume any calories you need to maintain.

Has music been a reasonable distraction?

Steve

Date: Sat, 10 Feb 2006
Subject: Fw: lifesytle changes and life changing effects

Until recently, a typical day for me would go something like this:

My alarm goes off at 7:30 AM, I hit snooze and go back to sleep. This scene repeats in about 10 minutes, and then again every 10 minutes until maybe 8:30, when I finally drag myself out of bed and make coffee. While it brews, I sit at the computer and check my email. Grab the 1st cup of coffee before it's done brewing so that I get the really strong stuff, make a bowl of cereal and return to the desk to open IE to my home page and read the comics followed by some "weird news" headlines. There's almost always something that requires my perusal before showering for work. In the recent past, I've had trouble making it to work by my 10:00 start time, but as I've gained immeasurable maturity in recent years, I almost always make it there by 9:30.

Thanks to having a very marketable skill of Master Automotive Technician, I've not been unemployed for more than a week in the last 25 years (nor the 15 years before having such an illustrious resume), however I've never placed much of my identity in my job, it was always something I did to support myself, my hobbies and my habits, something that allowed to live my real life. Therefore, what happened between starting time and quitting time has no significance on this story.

After work I would return home, eat dinner and surf the internet, following one fleeting interest or another, fueled by meth and weed until I could no longer keep my eyes open between 2:00 AM and 4:00 AM. I've never been able to make much progress on essential projects during the week because spending 9 hours in the "working environment" drained my desire for further physical labor, or in more recent years as a technical editor, my desire to do any physical labor.

This is not to downplay the value of intellectual pursuits via the web. I have always been interested in more subjects than I could ever manage to study, to the extent that I normally feel so overwhelmed by wonder that I am paralyzed from the fruitful pursuit of any of them, content instead to follow fragments of my wandering curiosity. But this too has nothing to do with this story.

Obviously, I have undergone many lifestyle changes of late. This is what I did today:

I awoke at 5:30 AM, made coffee and checked my email. About 6:45, as soon as it was light outside, I went out for a walk. (I've been walking 1 - 3 miles everyday. This in itself is a major lifestyle change, but only a minor point in this story.) I walked down the street to UC Davis Medical Center where they have a new, 4 story parking lot. I passed a grassy area on the way where a man was playing with his 10 year old Golden Retriever. I stopped to pat it and thought about Dylan for the hundredth time this week. Then I climbed to the top level of the parking garage and watched as the sun rose through the trees of the neighborhood. I looked around and saw that the only taller structure in the area is the clock tower at the Med Center, so I walked over there to see if I could gain access to the stairwell, but the place is guarded like a fortress, so I started back home. As I passed the Ronald McDonald House (a hostel for children with cancer being treated by the Med Center), I noticed an orange tree in the back yard of the house next-door. The tree was so laden with fruit that the branches on my side of the fence were dripping over-ripe oranges on to the ground behind some hedges. I love oranges and couldn't bear to see such waste, so I went over and picked a couple. I peeled one and ate it as I walked away. It was at this point that I noticed what an extraordinary day it was shaping up to be.

To describe the balance of a long and productive day as succinctly as possible, let me just say that I accomplished more today than I would have in an entire weekend in my recent past.

So what:

I have always described myself as an agnostic, the only doubt to my disbelief stemming from the wondrous, beautiful complexity of a flower. To be brutally honest, in view of the daily senseless horrors that take place, the human tragedy that defies explanation, I have rejected the idea of a compassionate God out-of-hand and proclaimed that if God indeed exists and allows this to happen, I will not worship Him but denounce Him.

Recent events have led to my rethinking many things that I have felt so sure about in the past. I engaged in some "spirited" discussions about God with my very dear friend, Pamela recently, which ended with us agreeing to drop the debate until a later date. I believe now that I was feeling unjustly persecuted. 52 is a relatively young age to be afflicted with lung cancer, and indeed there are many people who I felt deserved it more than myself. A few days ago I complained to God about it and challenged Him to explain His mysterious ways to me on this count. Tell me why I had to go through this. Give me a sign if you are listening. The ranting of a profoundly confused man. Then today happened.

There can be many explanations for today. Perhaps it was because, thanks to sleeping pills I got from the doctor yesterday, I got the first full night of restful sleep I've had in weeks. My friend Larry told me that when he showed up this morning he was sure I was wired. I was laughing and singing and carrying on so much that I can understand how someone who knew my history might believe that.

But I can't deny that, as far as divine signs go, this ain't bad. Tonight, as I took a shower, I confessed this fact to God. I explained that, of course I can't allow this one thing to completely alter my belief system, especially considering the possibility of other explanations. I also admitted that, if it was a sign, it was a damn good one, but I would need a little continued guidance, maybe a helpful shove here and there to help me rearrange my skeptical mind. I also thanked Him for today, regardless of the explanation.

I'll let you all know how this plays out.

To: Tom
From: Duke
Date: February 10, 2006

Hey Tom,

Don't worry about what you get revealed to you and what you don't understand. The whole concept on religion or what I call belief is completely based upon faith.

The way I would put it into perspective is this. If that flower you see is so beautiful, which I am sure it is, and the deliverance of each new day is that spectacular, how could we possibly begin to understand the enormity of the universe and its many, many marvels? Simply with our faith or belief that there had to be a force or power or something that made all of this possible.

I guess that when you think of all of the injustice in the world and the many evils and injustices, once again you have to have the faith that there was a reason behind this and it will all be revealed to us someday. I think we are far too fragile and limited as humans to fathom all of this. That is why God gave us free will and limited capability. His love of us as his creation and his grace he has provided us for perpetuation in the cosmos of creation by simply accepting his existence, is his way of showing us that love.

Funny, the things we get wrapped up in on the microperspective of our silly day to day stuff make us forget the significance of the gifts we have been blessed with.,

I am trying not to preach. I am neither a preacher nor a good example of a righteous man, however, just a friend trying to make some meaning and appreciation of what you have experienced.

Keep talking to God, ask him to get me to talk to him again Tom. It has been far too long for me since I last talked to him. I need some time to find the way to talk to him again myself.,

Great to hear what you wrote.

Duke

To: Tom
From: Pamela
Date: February 10, 2006

Hey Tom,

Okay, I cried at the end of your email.

Love ya,
Pamela

To: Duke
From: Tom
Date: February 11, 2006

you are right, i am enjoying this journey.
i cant think of a better man to walk the journey with.

Duke

From: <tommacom@___________>
To: "Greg _____"

Subject: Re: lifesytle changes and life changing effects
Date: Fri, 10 Feb 2006 22:20:17 -0800

Thanks Duke,

I'm coming to see that I always get a thoughtful and introspective response from you, and I appreciate it.

You seem to be enjoying this thought process as much as I am.

Tom
To: Tom
From: Cindy
Date: February 11, 2006

Ok Cuz,

I recommended the book by CS Lewis Mere Christianity. Perhaps now would be a good time to read it. It sounds like you want answers to questions men (and women) have had for ages. This book was written by one who asked similar questions that you are asking. He was English or Welsh (could be related for all I know), an educated man who questioned everything and had things happen in his life that could be considered trying, to say the least. However, he asked for signs. Read his book. It is deep and will have much food for thought as you walk, pick oranges and have that morning cup of coffee.

cindy

To: Tom
From: Stacy
Date: February 16, 2006

Good morning Tom,
Sheesh, not really sure what to say...almost cried when I read your e-mail
below. Not sure what God has in mind for you, but I'm still praying for you
so hang in there!

Stacy ______

To: Tom
From: Steve
Date: February 23, 2006

Tom,

Sounds very positive. The schedule SNAFU is always something to be reckoned with even if you think you have a firm schedule in mind; conditions change. So right now you know the track that you are on but you need to be flexible as you don’t know who the switchman is. But you are fully aware this and handling it most excellently.

My dad also became frustrated by a “schedule change”, which may have also come from a misunderstanding. He found out that his “last” chemotherapy round (4 treatments) was in actuality his next to last. So he had to wait for some recovery time and testing and go through chemo for the “real last” time. This re-gearing of your mental state affects everybody differently and my dad felt that he was being jerked around.

I’m assuming you will be receiving external beam therapy using either a linear accelerator (LINAC) or a Cobalt 60 teletherapy unit. Either way the science and art (and I mean art) of treatment planning has progressed to a very sophisticated level. Computer algorithms tract individual photons of energy and then sum up their effects and poof out of the black box comes the answer. Now that’s a mathematical answer but it is difficult to factor in individual human responses to various treatments and modalities. So stay positive and keep with your regimen of eating well and exercising as you can and keep in touch with those close to you.

All our best.,

Steve

To: Tom
From Duke
Date: February 24, 2006

Hey Man,

Look at the bright side of things. You have a much better survival rate with the early detection and treatment. Keep your optimism. It will give you strength to look forward instead of back.

Easy for me to say, but you know what I mean. At this time, I am much more hopeful about the whole prognosis.

Let me know when you think you can get down here to visit. My house is open to you. I just don't want you driving the whole way. Maybe Rattlesnake Larry can travel with you!!

Duke

To: Tom
From: Albert
Date: February 24, 2006

hey tom, its albert. i just wanted to wish you the best of luck and hope you do well on your chemo. it sure is different here without you around the office. we all miss you and hope to see you around the office again soon. good luck!

Albert ________

Date: Mon, 27 Feb 2006 20:41:52 -0800
Subject:: Phase 2, in which Doris gets her oats . . . .

Sorry, I couldn't resist the reference to the Beatles (from Let It Be). I never really have understood what it meant, but it fit the occasion . . . . .

I did begin phase 2 of treatment today, radiation therapy. I had my first meeting with the doctor in charge this afternoon, who explained the general way in which treatments work (think microwave oven with better aiming), the schedule and duration of the treatments (5 days per week for 6 weeks, weekends off - not so much for me as for them, I assume) and the common side-effects (a patch of sun-tanned/burned skin and a host of other possible unpleasentries). It's times like this that my oblivious nature serves me best as there is no part of this which I like the sound of. It is, however, a necessary evil and I will endeavor to fixate it as such in my mind.

The science of it is fascinating. Today I had a procedure designed to precisely target the tumor under the upcoming burst of radiation. To do this, they began by making 3 marks on my body with a magic marker while I lay in what will be my common treatment position, 1 mark in the center of my chest and 1 on each side of my rib cage. On each of these marks they taped a steel BB as a sighting device to align three lasers, one pointing at each mark/BB. It was explained to me that these marks are completely arbitrary, merely three locations to begin triangulation. Next, I was fed through a CT scan machine which took picture slices of the tumor with the BBs again acting as sighting devices. Those pictures and all related geometrical information are then sent to the "physics lab" where the necessary "shifts", or changes to the position of the aiming marks to ensure accurate targeting of the tumor, will be determined. Next Monday I return to the clinic and the shifts will be applied and the procedure repeated. If everybody is at the top of their game and all adjustments are accurate, I will begin the first treatment immediately. But accuracy is critical here due to the severity of the side-effects if the wrong bit of tissue is irradiated (or if the correct target is missed).

I'll send more as I understand more.

Tom

To: Tom
From: Chris
Date: February 27, 2006

Hey Tom,
Just a quick hello. Sorry to hear about your trials and tribulations but
glad to hear you are making some progress and have a good outlook. No one
but God knows why some people get tested more than others, and I won't
presume to tell you I know how you feel. Just rest assured that there are
lots of people praying and pulling for you, and that you are missed around
this place [work].

Chris ______

To: Tom
From: Steve
Date: February 28, 2006

Tom,

Your description sounds fascinating. The therapy localization is interesting in that each person’s anatomy, inside as well as outside is different. So it’s not exactly an off the shelf type of process. Keep us informed of the process. Do you need to use aloe vera for the skin burn?

Steve

To: Tom
From: Art
Date: February 28, 2006

Cool Tom,
I dig the Beatles, they were so ahead of their time and still are really so relevant.
One of those all time greats that I see unaffected by style or the whims generations.
Maybe not all of their songs, but many of them dealt with something central to
our beings spirituality.
Ever seen the movie "Michael"?
It's a rather irreverent but fun story involving the arch angel Michael.
He's trying to describe something and starts talking about "John, Paul,
..." and his companions think he's talking apostles ...
And Michael says,,, "not them,,, the Beatles...".

Thanks for including me in your mail.
I am honored that you'd share these details with me.
You prolly know that we have a small prayer group here at work.
We have been praying for you as a group and individually (I have been and
surely others here have been).
Hope this is okay with you, I don't remember being asked to, we just
started doing it.

Blessings, Art