Tuesday, July 31, 2012

Last Day of July!

It has been two years since my last chemo cocktail, that voodoo combination of lethal drugs administered by the nurses while adorning hazmat suits in the cancer ward.  I am a survivor!
I am sometimes asked what advice I might have for someone newly diagnosed with Hodgkin's Lymphoma or even some other type of cancer?
   Maybe see your doctor sooner might be at the top of my list.  I had noticed a small lump on my neck while shaving at least six months before I went to my doctor!  I kept my eye on it as it grew and became bigger and harder, always thinking that it might go away.  By the time I went for my physical it had spread throughout my lymph system, into my spleen and down my spine.  An earlier visit and I might have gotten away with six chemo sessions.  I had twelve.
   There are some things I would do differently.  I would go to my dentist before I began treatment and get my teeth cleaned and a dental check up.  I developed a blood clot along the way, not all that uncommon, and was given warfarin, made from rat poison (these chemists don't work with fine Scotch!) and because of the potential of bleeding, the dentist didn't want to see me.
   I would have gone to the eye doctor to get new reading glasses.  There will come a time when you will not have the energy to do much else and a good book can become very important.  In fact, I would line up ten or twelve good books and get them in advance, knowing now that I wouldn't even have the energy to look for them.
   I would eat!  I would splurge on food and wouldn't care whether it was healthy or not. During this chemical process I pretty much quit eating and lost almost sixty pounds!  I would find a friend (we all know one!) who has access to marijuana and ask them to roll me a couple joints...just in case!
   I began Blogging during this time and that might have saved my life.  You never know why you survive and someone else doesn't?  The guy who played Sparticus on the television died from Hodgkin's Lymphoma or died from the cure!  Stronger people and those with more faith than I have succumb to this cancer.  I liked blogging.  It was a world without time or direction and I could become reflective or jubilant and my reader's would not care.  I met a lot of friends in the blogging world and always looked forward to their encouragement.  While I might fall asleep in front of the television, blogging kept me awake and I had stories to tell.  And questions to investigate.  I did it this way, how did you do it?  Surviving cancer is best as a shared experience.
    Oh yeah, if I had to do it again I would win the lotto first!  I was lucky and had great insurance but cancer is very expensive.  Health issues are the number one cause of bankruptcy in the USA.
   Anyway, July 31st, two years and here I am!  Still after that "perfect tomato" and once again, strong and welding, making my metal art.  Who would have known?  I post here sporadically now, updates.
My main blog, day to day art and what I am thinking is http://www.jerry-carlin.blogspot.com and, if you are curious, my very first blog was on my ArtWanted site and that will give you a day to day, blow by blow view of the experience I went through.http://www.ArtWanted.com/slate
   Mt next check up with the cancer doctor isn't until October.

Friday, May 11, 2012

As Good As...

How does that expression go?  Not as good as I once was but as good as I was once?  That is me, had my check-up today and short of taking apart my atoms in a MRI I am still "Cancer-Free".  I am pretty sure the doctor only knows this because that is what I tell him;  it was not as though my cancer was warn on my sleeves,
pretty much all invisible inside stuff.  I have no symptoms, no swollen lymph glands and most of the chemo symptoms are gone too, except my forever, it seems neuropathy in my hands!  My price of survival and small one at that.  I keep a photo of me above my desk, taken a couple years ago at my worst.  The cancer never did that to me, it was all in the cure, a beast at best.
   I really can do almost anything now, anything from my younger, stronger days, just in shorter bursts but that can be good too!  I tilled my garden, normally a four hour job that took me two days and I just finished spreading a yard of mulch along the paths to designate walkways.  It will take another yard but that can wait until tomorrow.  Time seems to move in increments now like a watch that stops then jiggles ahead to catch up.
I have discovered that it will wait, all of that capturing and saving time was a lie.  There is no hurry.  Tomorrow will be here soon enough and so much that used to be important and cause me to rush just isn't there any more.
Not that I could hurry,  I am just learning to relax.
   I think that for Cancer People (we are NOT victims!) and maybe all retired people, someone should offer a class in "how to do nothing", there is a certain art in accomplishing nothing.  I am still amazed at how the day disappears and I didn't even get to make a "to do list"!  I am learning to not do that too.
   So my next check up isn't until September and I think my doctor and I chose that date because I could bring him some dried tomatoes!  YES!  It is going to be a good tomato season this year!

Wednesday, February 8, 2012

Another Blog

I am still alive!  I have tried my hand at painting and continue with my metal art and now I am going to have some fun at writing a mystery!  It is totally off the cuff, unedited and out of order and the first chapter is HERE..like any good book it will be half true and half fiction and my experience with cancer will have a lot to do with it.  I am thinking of a chapter per week, sometimes more and sometimes less.
We will see what happens!

Friday, January 20, 2012

Two Years!

It  has been two years almost to the day. Two years ago I had known about the lump on my neck for at least six months.  I had been watching it carefully every morning when I shaved, still there, a little bigger, maybe on both sides, never any pain, not even tender. Finally I went to my doctor.  He knew what it was within five minutes but sent me to the specialist anyway.  The Process of Discovery. Twenty thousand dollars later, lots of tests later, biopsies, pushing and pulling and looking at me under a microscope later they all agreed with my personal doctor: I had Hodgkin's Lymphoma!
   The "Cure" almost killed me but somehow I got away with it.  Hodgkin's is the "best cancer" but a lot of people die from it or die from the cure.   You never see that in obituaries but my guess is that it happens all of the time. Surgery certainly kills people on the operating table.  Radiation kills everything in its path and "Chemo", what I had is like finding a cure with a hand grenade.  It is a poison without discrimination and kills a lot of stuff.
   In two years I met a lot of cancer people at the Cancer Center and met lots of others in the blogging world.
I have reconnected with childhood friends who have been affected by cancer.  Many are now dead and survivors always have that survivor's guilt.  What do I have left to do that could be so great?  You often wonder why you get to live while others die.
   I do a little "art" but nothing special.  No reason there.  I am reading cheap mystery books now.  I read some art books, some history books.  Learning to read all over again and now am stuck on dime novels!
There is some guilt there too.  Something is not quite right that I could while away the day reading dime store novels while people struggle with cancer.
   The World doesn't stop and I know that.  It is a good thing.  We would all fall off.  I find myself short on words.  I have friends struggling with death or looking after someone who is in the thick of this battle.  I think it is a bit like the private world of the alcoholic.  I can't tell you how to survive it or overcome it.  I can only tell you how I did it.  I am not good with links, not very computer literate at all.  Even now, two years later I am pretty amazed when I read my almost daily journal with this battle I did.  Those blog entries are from my original bloggings that can be found at the top of my ArtWanted site, HERE.  For them to make any sense at all you must scroll to the very bottom and read them backwards in the order they were written.
   I have "collateral damage" from this encounter.  My feet are pretty numb and my hands feel as though I am stirring a bucket full of cut glass.  "Periferal Neuropathy"...Me and Dr. House! I take a couple vicodin a day and that gets me through.
   March will be here soon and I am still after that "perfect tomato" so I will be in the green house, my hands in the dirt.  Looking forward to it.

Monday, October 31, 2011

It is a Burn or a Cut or a Scrape

I am not sure.  It does not hurt.  I have no memory of when it happened, sometime yesterday.  I didn't notice it until I went to bed last night.
   So it is an excuse to talk about neuropathy today?  It is probably a little worse than I describe it.  My main method of dealing with neuropathy is to ignore it as much as possible.  I do take a vocodine first thing in the morning and the last thing at night but this just takes the edge off, reduces my focus on my hands and allows me to do stuff during the day.
   It has been a year and a half since my last "chemo" and this is my on going souvenir, the only reminder that I once had cancer.  It is mostly in my hands and it is very hard to describe.  Conflicting messages.  Like being asleep, like being electrocuted, like stirring a bucket full of cut glass, that is it mostly.  It travels up my forearm and while not as intense, it leaves them a bit numb.  No pain there just not what they used to be, not sensitive to the touch.
   I would describe the bottoms of my feet the same way, no pain, just a bit numb.  I could walk on coals.
My Voodoo Doctor tells me that a nerve cell can be four feet long and take along time to grow, to heal.  He says that in eight years I will be a lot better.  My regular Doctor tells me that in eight years I will be used to this.  Either way there is hope, huh?
 A wound in the shop
   I don't think about this very much.  It would be consuming and I could easily become the pain that I am left with.

My other Blog is Here

Saturday, October 29, 2011

To Die or Not to Die

   That is the question.  As far as I know I am still Cancer Free and because I have been thoroughly tested, prodded and poked and looked at from the inside out, I am more sure of this than most people.  Today, for sure, I will live without the cancer.
   But the whole experience was really interesting.  It has been almost two years now but the memory is with me like it happened yesterday.  I had the emotional experience, the intellectual and spiritual experience, that dreaded experience which comes from the news:  You have cancer.  That is an announcement that will ruin the very best of days.
   In my case there was a month of more testing between this news and the beginning of "the procedure".I knew something was wrong with me before I went to the doctor.  I was in no pain so I almost didn't go to the doctor at all.  I had these lumps on my neck that just wouldn't go away.  No pain, not even tender, just lumps about the size of a cherry when I first noticed them.  A small walnut when I finally went, maybe six months after discovering them.
   This month before treatment I was tested and poked and prodded, MRI'd and CAT scans and PET scans,
checking out my heart to see if it could take it.  The doctor's wanted to know how strong my body was and could it take the punishment they were about to inflict on it?  What type of cancer did I have and how far it progressed?
   I had Hodgkin's Lymphoma and it was pretty much everywhere!  Nasty stuff that had migrated from my entire lymph system to my spleen and spine.  I had it pretty much everywhere.

   THE CONFERENCE

When the doctor has acquired all the results, done his own research and collaborated with colleagues and has decided on a course of treatment he calls you in for "the conference".  This is worse than an Income Tax Audit.  It is sort of like a final exam.  I was one of the lucky ones with great insurance so everything was an option.  Whatever happened my total bill would come to $1,000 and the insurance company would pay the rest, well over $130,000.  I could tell you a hundred stories where cancer comes with financial ruin.
   Some Hodgkin's Lymphoma patients can get by with six "chemos".  The worst case can be a nightmare of dozens of repeated "chemos", radiation, surgery, bone marrow transplants and God knows what.
I was to get 12 "chemos" although he would have preferred, he said, 18 total but didn't think I could take it.
I started all this from a position of strength.  I have been in construction all of my life and began these treatments weighing 225 pounds and easily being able to lift well over 100 pounds.
   The beginning is really pretty simple and nothing much bad happens.  You have a lot of time to think, do any research you might want to do, discover fellow bloggers who might be going through the same thing, sort things out and think about your life.  What you did or didn't do, want to do, should have done.  Reflective stuff.  An attempt to discover what is important.
   I had a"port" installed in my chest, near my heart so these chemicals could be fed to me from there and not have to travel too far through my veins where they might cause too much damage.  I was knocked out for this and at the same time the doctors took some bone marrow from my hip.  None of this was painful because I was unconscious and under the operating table.  Didn't hurt the next day either.
   I am not sure if you should research this stuff or not.  The "Net" is explosive with gibberish, quackery, self help remedies, natural stuff, asparagus diets and alarming statistics.  There are a lot of cancer sites that are helpful too.  Cancer is no longer an automatic death sentence and if you have insurance the odds are pretty good.  Well, good odds for a gambler anyway.  I had "stage 3 and a half" Hodgkin's Lymphoma which means it has escaped my lymph system and discovered other places in my body where it was becoming comfortable.  My odds were slightly less than 50-50, much better than lottery tickets!
   I had a different Blog in those days and I will attempt to direct you there.
It is interesting in that it is a day to day accounting of this battle, pretty much everything I went through physically and emotionally on this train ride through Hell.  The experience was about one year, six months of "chemo" and six months to get my strength back, although I wouldn't say I am totally well even now, almost two years later.
   You will meet a lot of interesting people and most of them will die.  Being a "chemo" nurse has to be one of the hardest professions in the world, always upbeat, cheerful and smiling, knowing your patients are suffering and many will not survive this voodoo process, this chemical warfare.  The installation of Mustard Gas and chemicals so dangerous that the nurses wear hazmat suits while administrating them!
   I know there must be billions of cells in my body and most of them were perfectly good.  I saw cancer as the renegade cells, the few damaged ones surrounded by the good ones.  It was a fight I intended to win.
   If you are new to "chemo" your fingernails will curl, lift from your fingers and toes and most will fall out.  It is not painful.  Your hair will fall out, all of it, everywhere, no hair, no eyebrows, nothing.  That is interesting and of course, not painful at all.  You may have nausea, that is pretty common although I never did.
   In the first two months of this six month "chemo" process I gained eight pounds. Then I pretty much stopped eating.  I was never sick or nauseous I just couldn't swallow food.  Everything tasted like sawdust.
I pretty much survived on one Ensure and a little tapioca per day. Four months later I had lost over fifty pounds.  Not too much fun in that diet!
    I realized that I was getting pretty weak when I was unable to turn the key in the ignition of my truck.
I could do it with two hands, barely.  I couldn't walk around the block.  I slept a lot and was always cold.
I remember August and 90 degrees outside and I was cold.
   You have to discover other things.  I will continue this story.

My Other Blog is HERE

Friday, October 7, 2011

As good excuse as any...

I passed my test!  I was pretty sure that I would but it is not exactly the kind of test one can study for.
My blood is perfect and I have no lumps or bumps, no signs of cancer returning at all.  And the MRI and PET scans will be talked about at the end of January, my next scheduled appointment.  I gave him my arguments not to have them now and he respected my reasoning.  I have no symptoms and therefore no cause to get these tests.  I don't have the strength for another, much more invasive "cure" than the last one!And they are expensive, weather my money or the insurance company's, money best spent somewhere else.
And I am welding again, in the process of living and would prefer to focus on that.
   It is interesting how we can take an illness and make it a life's focus, controlling everything that we do.
I think back over my life and I have never done that.  Oh, I have hurt myself for sure but never gave it much time, just never saw myself that way.  I remember once, years and years ago when I was working at the local cannery.  I was severely burned when a batch of cream style corn exploded, getting 2nd and third degree burns all down my back.   That sent me to the hospital but I heal fast and only missed three days of work.
On another occasion I was in a traffic accident when some thief stole a car and rammed into me going 80 mph.  This destroyed the car and smashed a disc in my back causing me to wear a brace for about six months.  I missed a week of work for that one and returned working along with the others in my cumbersome back brace.
   I broke my hand once, smashing it with a three pound hammer and boy did that hurt!  I worked another two hours, finishing what I was doing.  I did go to the doctor for that one too but not until the next day!  He put my hand in a cast which I was to wear for six weeks.  I didn't miss a full day over that, just a few hours!
   There were lots of other times I could have made an issue of an illness or accident.  A few years ago I fell off a Church roof, steep as any church, fell 16 feet straight onto a concrete sidewalk landing on my bottom.
It looked like you beat me with a baseball bat!  I never even went to a doctor over that.
   The point to all of this is that I am not my cancer and have never been.  It wasn't a fun process and the chemo took its toll on me, that is for sure.  But at its worst when I couldn't lift 20 pounds I was still in my shop every day, doing what I do, even if with a weakened effort.
   It would be easy to focus on what is wrong with me, dwell on my neuropathy, worry about my lungs and that I can no longer run, haven't the strength I used to have.  It would be easy but oh so boring.

My Other Blog is HERE