And Now, I'm Finally Awake!

I don't know what the big deal about Vicodin is, but for me, it's not "all that".  Makes me groggy and dopey(er) for about 24 hours after I take one.  It may kill pain, but it kills any kind of decent functioning too.

As Leslye reported earlier, I'm through it after about a day and a half of sleeping.  I didn't out-sleep the cats, but I worked on it.  The worst I have to report is a soreness underneath the left side of my mouth, the inability to open my mouth wide enough to take big bites of food and a sore throat from the tracheal tube used during the surgery.  As I've been doing a lot of comfort eating lately, this may work to my advantage.

It occured to me that there may be people out there who have never had surgery.  By surgery, I mean the going to sleep kind, not the stuff they perform in doctor's offices.  In keeping with the educational nature of this blog, here's what I went through.  All you first timers, pay attention!

First off - no eating before hand - usually 8-12 hours before.  Surgery is usually scheduled early in the morning, so this doesn't pose much of a problem except to coffee drinkers.  If you take medicine in the morning you're allowed to take it with a "small sip" of water.  I usually cheat and go for at least one big gulp, and so far no problems.  The reason?  Some people are made nauseous by the anesthesia and the operating room staff doesn't want to clean up after you any more than necessary.  You also stand a good chance of inhaling (aspirating) the contents of your stomach during surgery should you get sick, and that's not good.

Once you arrive for surgery, you'll be questioned at least 1000 times for your name and birthday.  Bear with it, it's for your own good.  You're probably not the only one at the hospital getting surgery that day, so everyone there wants to make very sure that they're doing the correct procedure on the correct person.

DO NOT let anyone write on you except the surgeon.  This was a new one for me.  Leslye decided to inject a little humor into the situation by writing something like "no step" or "other side" or "not here" with a purple marker over the scar on my right neck from the last surgery (this one was for my left neck).  I thought it was funny too, but nurse's eyes got big as dinner plates when she spied the graffiti.  She wanted it scrubbed off right away because she said the surgeons are supposed to ink out where they're going to cut and initial it; everyone there is trained to look for the purple ink and she didn't want any confusion over what was being done.

Next, you'll get a visit from the anesthesiologist who will of course: ask for your name and birthday.  They usually ask what your weight is (Don't lie!  It's written down somewhere!) and if you've eaten anything.  They'll tell you about how long you're going to be out and warn you about the tracheal tube.

The tracheal tube ("trach", sounds like "trayk") is a tube put into your throat and partway into your lungs to make sure your lungs are exchanging carbon dioxide and oxygen the way they should.  During anesthesia, you're so "asleep" that your breathing is very shallow, usually not even enough to move the air all the way out of your windpipe; so left on your own, you'd simply be moving the same air up and down inside your windpipe.  The trach takes up the slack by pumping the volume of air in and out of your lungs that would normally be moved by your now soporific diaphragm. It's also a delivery system for anesthesia gasses and medicene.

They'll tell you that the trach is uncomfortable if you're awake enough to be aware of it and if you feel it, don't panic -- you are getting enough air.  I can vouch for both parts of that statement.  Once I felt it going down my throat right before the lights when out.  I thought "Huh.  They're right.  It is uncomfortable."  Then I was out.  Another time I was waking up and felt this THING in my throat and thought "This must be the trach.  It sure is uncomfortable."  Then I fell back asleep and woke up later without it.

You'll almost certainly wake up with a dry mouth and a sore throat.  The sore throat is from the trach scrubbing up and down your throat, the dry mouth is from something they give you to dry up your mucus membranes.  Dry membranes help keep your airways from clogging up and helps prevent pnuemonia.  I'm convinced that amongst the team of people keeping you alive at this point is someone who's sole job is to keep you supplied with ice chips.  You're still too sleepy to actually drink anything, but you'll be offered ice chips, and at this point in your life, there is nothing better than having a piece of cool ice placed in your dry mouth.  Don't pass it up.

One thing the anesthesist usually does in his or her job is administer a drug that causes short term amnesia.  This is supposed to help blunt the trauma of major surgery, but it's also a source of merriment for your spouse.  For instance, I remember only bits and pieces of my recovery and drive home, and don't remember walking inside my house, talking to my mother, and going to bed, though I've been assured these things happened.  My first clear memory is that of being offered a glass of something to drink later that evening.
 
You may come home with a fairly recent innovation (at least to me), a "JP drain" or "Jackson-Pratt drain".  This is a small bulb about the size of an egg made of silicone-like material with a small tube connected and a small drain port.  The other end of the tube is buried inside you near the point of surgery draining fluids away from your wound into the bulb.  Back in the olden days, drainage was accomplished by letting the fluids seep out of the incision onto the bandage covering the wound, necessitating a change of bandages at least once each day.  The JP drain works by squeezing, then capping the bulb causing a gentle suction on the tube.  This causes some of your precious bodily fluids (that you don't need any more) to drain into the bulb for emptying later.  To empty, simply uncap the drain port and squeeze the contents into a cup.  Squeeze the air out of the bulb, cap the drain port, and you're ready to collect some more fluid.  Nothing about having the JP or emptying the JP hurts, it's just annoying and a little creepy having this tube and bulb literally hanging off of you until the doctor removes it.

My next step is to wait for healing.  I originally heard from the radiologist that she doesn't start RT until four weeks after surgery.  This is because radiation effectively stops any healing and she wants to make sure her patients are healed before going about the business of destroying tissue.  In my case, it may be sooner, maybe as soon as two weeks post surgery since (I've been told by professionals!) that "I'm young" and that "I heal well".  Next appiontment is about two weeks from now, so we'll see what the doctor has to say.

Paul's Surgery Report

Posted by my wife, Leslye:

For those of you on pins and needles waiting for a 'Paul update' here it is. He is fine, as we all knew he would be. The doctor, who is very closed lipped, said Paul went through with flying colors and the dr. got the lymph nodes in the area.
Paul made me laugh as he was coming back around to reality. I have never seen him so 'intoxicated' because he doesn't drink. He repeated questions, had the funny voice and kind of swayed when standing up to finish dressing. It was funny and safe. The only 'bad' thing was reminding him to take deep breaths to get his oxygen level back up.
He slept all the way home as I knew he would (1 hour) and was funny groogy the rest of the night. He conceded to taking a half a pain pill and spent the night waking us both up. He would ask if he was keeping me up, I would say no and snuggle in closer to him. I love my husband!

Exactly What's Going On Here?

It's official: I go in for surgery next Tuesday to remove the little spot under my left chin that the PET scan picked up and the FNA confirmed as MCC.

Dr. Guerrier, the radiologist, doesn't want to start radiation until four weeks afterwards to make sure I'm well healed, so that means I'm looking at the end of February (the 22nd to be exact) before I can start any treatment aimed at eradicating this stuff as opposed to picking off chunks that are visible to the naked eye.

It's aggravating, sure, but overall I'm glad it was caught before RT and chemo began.  Resection is still the best way to treat this cancer and it would a hundred times as disappointing to go through everything, be "disease free" for a few months, then wake up with a lump under my chin one morning.

So in the surgeon's office this morning, he reviewed the CD of my PET scan images.  And kept reviewing them.  And kept reviewing them.  Then he jumped up to palpitate my left neck and under my mouth, then looked at me almost consternated!  It's as if he didn't believe that there was a pea-sized bit of death hiding under my teeth.  He had reason to be confused: he couldn't feel anything like a swollen lymph node in my neck.   I had to show him on the computer screen where the tumor was!

The only reason I knew where it was, was because Dr. Gueirrer had shown me, and the only reason she knew was because someone who does nothing but look at PET scans all day had shown her.   Dr. Reintgen acknowledged that the bright spot I pointed at must be the MCC, but the only way he knew for sure was because of the FNA report.

My surgeon certainly isn't incompetent and neither are your doctors.  This is just an example of how difficult it is to practice medicine.  It's a wonder that anyone wants to become a doctor at all given how many variables and variations humans and diseases come in.  That's why I'm suspicious of medical "miracles" where someone is suddenly "cured" of a disease.  I think has less to do with miraculousness and more to do with the fact the we just didn't have it right in the first place. 

The more I get involved with this, the more I'm amazed at how imprecise medicine is!  I, along with everyone else, demand 100% surety from my doctor and his tools but that's just not reasonable.  After reading doctors' notes, lab reports, pathology reports and such, I noticed they all couch their results in language that seems to avoid responsibility.  Words like "suspicious for", "indicates that", "presents as", and "consistent with" -- these are not terms that inspire confidence in me.  Avoiding responsibility has nothing to do with it of course; it's that the human body is so incredibly complex, it's impossible to know exactly what goes on inside of it.  The best we can do is divine an approximation of what's happening with our crude tools and acknowledge that approximation with precise, imprecise words.
 
This has been one of the most frustrating parts of this disease.  I can tolerate some uncertainty and generalities in many parts of my life, but it's wearying in this aspect where the stakes so high.

Here's What Ruined Our Day Yesterday

In spite of what these pictures mean, I'm delighted to be able to post them.  It warms the inner geek in me that I've achieved what the average 11-year old can do anymore.

These pictures are the part of my PET scan that have caused me, Leslye and my doctors so much consternation the last couple of weeks.  Here's how you view them:  Pretend I'm lying on my back in front of you, with my feet closest to you.  You're at a vantage point that will allow you to look directly into my nostrils (sorry) and the underside of my chin(s).  My chin is pointing to the top of the picture, the back of my head is at the bottom.

The picture below is PET image of my soft tissue that has taken up the radioactive tracer.  Any decent Wikipedia article will tell you how a PET scan works, here it's important only to know that bright spots mean that lots of tracer has been absorbed.  Things that absorb tracer are hungry things like brains, livers and tumors.

Doesn't my chin and jaw line look like a shmoo from behind?

Notice the brighter fuzziness just underneath the outline of my chin and jaw; these are soft tissues that have accumulated the radioactive tracer.  I actually have no idea of what it represents, save that it's normal tissue that didn't bother my doctor.  This constellation of cotton balls is normal enough except for the one lone cotton ball above the group at about the 1:00 position, closest to my chin.  During my FNA this cotton ball was the target of the needle wielding doctor.

The picture below is the same PET picture, but overlaid with a CT scan which in this case is designed to pick up harder materials like bones.Here, the bright spots are a combination of tracer uptake and bones.

Now it looks like Dumbledore from the front, reading
a book or playing with a Slinky.

That stray cotton ball signals danger in at least a three of ways.  For one, it's hungry in a way that lymph nodes shouldn't be.  Second, it's out there all by it's lonesome, not at all where a doctor would expect it to be.  Third, there's only one of them.  Most organisms including the human body exhibit bilateral symmetry, which for we biology dropouts means that if you folded us in half along a line, both sides would match up.  In the human body that line runs down the center of your nose down and across your belly button down to the ground.

Bilateral symmetry is very important to doctors because anything not symmetrical is usually trouble.  If there had been another cotton ball about the same size at about 11:00, my doctor may not have worried as much but the fact that there was a hungry something, in an unexpected place, without a mirror image sibling, was cause for concern.

I've always been a fan of non-invasive technology -- anything that helps me avoid pain gets my vote.  Before PET and MRI and the like, doctors were pretty much limited to x-rays and "exploratory surgery". (when's the last time you heard that term?); now a lot of diagnostic work can be done by electrons, neutrinos and magic.  It's ironic that non-invasive technology can lead to invasive surgery.

Anything Worth Doing Is Worth Doing Well

Today I got the details from the Dreaded Biopsy.  The good news: PET scans are indeed worthwhile for detecting cancer.  The Bad news: it detected more of it in me -- just a little more, but in this game that's like being a little pregnant.  The PET detected a previously unknown met of MCC in my left neck that the biopsy subsequently confirmed.  I'm a little confused about exactly what was confirmed, but the oncologist, radiologist and surgeon are all in agreement: more surgery is required.

When Dr. Nakka announced that the biopsy revealed more MCC in my left neck, Leslye took it much harder than I did and started crying after an angry outburst of "How dare it!".  Me, having been hardened by the sudden loss of my first kidney at 17, and being a testosterone numbed manly man, had short bursts of feelings lasting about half a second each in this order:

• "Damn!"
• "Uh oh, this could really be serious -- I could die from this."
• "I can't die from this!"
• "This isn't fair!"
• "Oh brother, more surgery."
• "I'm never going to get ahead of this stuff!"  
• "Am I going to die of this soon?"

then finally a (resigned?) "Well, better to find out about it now rather than later."

I tried to sooth Leslye by saying something stupid (which most men do when women are crying), and said "I'm sorry".  We both knew I had nothing to be sorry about, but it's a phrase that has stopped tears before and was about the only thing I could think of.

Dr. Nakka had already talked with the surgeon.  She suggested I call his direct line right after our appointment on the off chance that he could see me today.  This ratcheted up the worry factor a little because it seemed to me that there was a little more concern about my situation than before.  Nobody said anything, and I didn't ask so I can't be sure, but suggesting to a patient that he consult with a surgeon immediately following bad news conveys a certain urgency, no?

So now I have an appointment this Thursday with Dr. Reintgen.  He's operated on me before, recently even, so the appointment probably won't last very long, probably only long enough for a short explanation of what he'll do and when after he looks at the PET scan.  He does clinics on Thursdays and surgeries on Tuesdays so I'm shooting for surgery next week on Tuesday.

Whatever the surgery date, it will push chemo and radiation back.  Dr. Nakka says she doesn't like to do chemo until six weeks after surgery, but said that she'd probably start mine after two weeks.  I can't help but think this may compromise my treatment, but maybe waiting a full six weeks will allow another met to take root; it's a balancing act that I certainly am not qualified to manage, nor do I want to.  Just speculation here, but it's probably because chemo is so hard on a body, that it's protocol to wait until the body has a chance to recover from surgery.

For those of you who stumbled on this blog after recently being diagnosed with cancer, get used to the fact that nothing about this disease, or any other major disease, is set in stone and it can change in an instant.  It really takes a "One Day At A Time"  attitude to not go completely nuts.  The most aggravating part for me?  Not being able to plan.  I'm not a slave to the calendar or clock, but for pity's sake! -- I'm getting tired of having my life and plans jerked around at a moment's notice, and it's very tiring sitting in doctor's offices and awakening from anesthesia.

One Moment Please

I know I said that my FNA biopsy results would be ready on Wednesday, and that's what I thought, but...

The radiologist lady (Dr. Guerrier) is on vacation until Monday and because she needs to render an official medical doctor type opinion on what the pathologist saw, her office won't release the results to me until after.

A few people have expressed concern about "how stressful this must be for you."  It's a little irritating, sure, but knowing today isn't going to make me live any longer or shorter, so why fuss?  I'm busy with my church's annual chili cook-off anyway and any possible bad news would ruin my concentration on winning this year.

Apathy my friends.  Apathy is the key to serenity.

Thoughts From A "Long Suffering Wife" or A Wife's Viewpoint

Today's post is by my wife, Leslye:

 

I am Leslye, Paul’s wife of 19 years this April.  I think it is great he is writing this blog and I sometimes gain insight from it. 

I have always known him as a kidney transplant recipient and I understood his need for medicine, blood work and doctor visits 4 times a year.  It wasn’t’ until around the 4^th skin cancer biopsy and/or removal that I started to realize I was going to be losing him biopsy bit by excision bit.  I didn’t like it but what could I do?  Sometimes I would wish he wasn’t quite so diligent and not always have something open and bloody.  Plus the pain of the freezing…I don’t know how he does it.  There finally came a time I just got mad at his suppressed immune system that was allowing these stupid Squamous and Basal cell cancers to continually invade his body-my body that I loved to stroke.  He always seemed to be going to the dermatologist/ARNP; I know we bought him a boat or two. I am now eternally thankful to the ARNP for doing the shave biopsy that showed MCC.

I guess I put too much faith in medical science. The worse part of Paul losing his kidney was watching him ‘wind down’ like a wind-up toy.  It was frustrating because everyone knew Paul would need a transplant and his brother was a perfect match.  Need kidney, have one, put it in, get on with life.  For whatever reason, they had to let the old one run its course and we all suffered by watching him get sicker and able to do less.  *Stupid*. Because of my faith in medicine I never gave thought to idea that he could reject the kidney.  I knew everything would be fine, it was and continues to be. 

Ten years ago I never gave “the Big C” (my dad’s term) any thought.  It did not affect my life.  Then my [step] grandfather was diagnosed with lung cancer and died within a few months.  I never got to say goodbye.  I hated cancer because it had so quickly taken away my grandfather.  Five years ago, his son, my [step] uncle was diagnosed with advanced lung cancer.  HE WAS IN HIS MID 40s!  Roger immediately quit smoking (big duh there) and did *everything* he was told to do and then some to prolong his life.  He even participated in a study or two.  Nothing would stop the spread of cancer and he died almost 2 years later to the day of diagnosis at the age of 47.  I HATE CANCER!!  Cancer doesn’t care who you are or what you do to stop it.  It just keeps growing.

The thought that this MCC may take my husband’s life enrages me.  And it scares me to death.  Really scares me…a lot.  

I know that life is not fair but damned it, this is not fair!  Paul has been through so much: his kidney health scares, our ‘high maintenance’ kids (16 & 18 now), skin cancers and now this *%#)*@! MCC comes from out of nowhere.  One of the things that makes me mad is that it had the nerve to grow over a scar from yet another BS or SC. How dare it!

So here we are 2 months after hearing the term Merkel Cell Carcinoma.  You have read what Paul has gone though and I am with him every step of the way.  I find myself slipping and saying ‘we’ have an appointment when it is really Paul who has the appointment.  I go with him for moral support, to be a second set of ears and note taker and be in the background.  That last one is a challenge for me because I am a take charge type of person.  I have to remind myself that I am with Paul during appointments and procedures for HIM, not my need to know everything.  2011 is all about my husband Paul, his needs and his BEATING this cancer.
 

I am a better wife now.  I am less self centered, less demanding of our 16 yr old, and try to be much more aware of Paul’s needs. I kiss him every opportunity I get and tell him I love him more often than when one of us leaves the house.  I now go to bed when he does and we snuggle in bed for an hour on Saturday mornings.  I want to give him the best care, support, nurturing and love he needs to get through the upcoming treatment.  

The thing I hate more than anything, cancer, has made me a better person and wife.   I am not going to lose my husband to it without a heck of a fight.

The Dreaded Biopsy

This morning was The Dreaded Biopsy.  This biopsy involved trying to put a needle into a 5mm "something" deep in my neck to draw out a few cells.  For lack of a better term, I'll call the "something" a "lump".  I prepared for this a couple of days earlier by calling the hospital and fairly pleading to be put to sleep during the procedure.  I'm usually stoic about these sorts of things and can usually get by with just gritting my teeth but everyone has their breaking point, needles in the neck is mine.

I managed to get hold of one of the nurses in the radiology department and whined, lied, cajoled, bribed -- anything to get some sort of sedative prescribed for this procedure.  I was shameless.  She was sympathetic to my cause and put a note in my chart.  What the note said is unimportant to me, all I know is that it worked and I got my happy juice.

Learn from this.  It's OK to (politely) make requests and talk back to your medical professionals.  I've probably had more than my share of medical encounters and for all except a couple, have never run into anyone that was not willing to listen to my suggestions and concerns.  They've all been willing to explain things and work with me.  For the one doctor that didn't, I listened politely to his recommendations, then found another doctor.

Doctors love patients that ask questions.  It shows them that they have a partner in the treatment of the disease and not a lab rat.  This requires a little work on your part because you have to learn a little bit about your condition in order to ask intelligent questions and take responsibility for part of the treatment.  This can be difficult and unsettling at times as when the oncologist asked me if I wanted chemo, but overall, it's the best way to fight a disease.  I'm using the word "doctor", but I mean any medical professional who's treating you -- doctors, ARNPs, nurses, technicians, aides, etc.

Now on to the gory details of the procedure.

I and my long suffering wife arrived at the hospital at 6:00 this morning, signed in, did our paperwork, and were escorted to the waiting area.  Because there was a chance of contrast being used and I was getting intravenous drugs (yay!) it was another NPO morning for me, so I was famished.  (Hint:  If at all possible, drink lots of water right before you go to bed.  You're not as dehydrated the next morning and it'll almost certainly make sure you wake up early.)
 
After awhile we were led to my temporary room where I slipped into the fashionable hospital gown and got my IV port, and after a surprisingly short time was wheeled down into the radiology department.  More waiting and the doctor who was going to do the actual needle sticking came in and introduced herself.

She explained that this was a fairly difficult procedure because the target was pretty deep in my neck and she was going to have to thread her way around nerves and arteries and salivary glands that also live in my neck.  She didn't even promise that she'd be able to get anything to work with because she would abandon the biopsy in favor of preventing damage.  That was both reassuring and distressing; I was glad she had my best interests at heart, but the thought of going through all this and coming up empty handed kind if irked me.  She also stressed that I had to be very still and swallow as little as possible. 

Huh.  "Try not to swallow."  Have you ever been told to not swallow then tried to not swallow?

A few minutes later I kissed Leslye goodbye and left for the CT scanner room.  The idea was to do a CT scan to precisely locate the lump, then insert the needle a little bit of the way in, scan some more to check the location of the needle, push on the needle some more and so on until the lump is hit.

After I climbed on the table of the CT scanner, the nurse put some sedative into the IV.  I must admit, having never used recreational pharmaceuticals, I was really looking forward to this, just to see what all the fuss was about.  It was nice but woozy.  It certainly did take the edge off, because when it came time to insert the biopsy needle all I thought was "Ah!  She just put the needle in.  It kinda hurts."  And that was it.

The rest of my time in that room consisted of dozing and responding to the CT scanner tech's voice saying "Don't breath, don't swallow,  (Pause)  OK, breathe." while she scanned me to check the needle location.  That's all I remember. 

The whole thing start to finish was supposed to take about a half hour but took an hour and a half for me because the lump kept scooting out of the way of the tip of the biopsy needle.  The doctor said it was like trying to stick a grape sitting on top of jello.  She finally got hold of it by sticking another needle in my neck to hold the lump still so the biopsy needle could make contact.

Afterward I was wheeled back into the radiology department where Leslye was waiting and I was watched for bleeding.  A short while later I was wheeled back to my temporary room and an hour later went home.  The sedative was still going strong so after lunch, I ended up sleeping the rest of the afternoon.  The only real after affect I have is a fullness in my neck under my mouth and a little tenderness.

The results of the biopsy should be available sometime next week, probably Wednesday.

No Clever Title Yet

Picked up the trays for my teeth thingees that I'll use during my course of radiation treatments to fortify my teeth against the radiation.  Never had braces, never had more than a single cavity in my life so this is brand new stuff! They said it's like a mouth guard but I never played sports either.

After that, went over to the medical oncologist for my follow up appointment.  After conferring with the radiologist and other doctors, she's decided on a course of carboplatin for me.  She stressed that it hasn't been proven to extend overall survival, but it does improve disease free survival, or as my wife so succinctly put it, it will improve my quality of life, my "comfort".  Dr. Nakkas's main concern other than the efficacy of treatment was my kidney function.  Cisplatin can be nephrotoxic; carboplatin can decrease kidney function temporarily but if managed properly, will cause no permanent damage.

After explaining all this, she turned to me and asked if I wanted chemotherapy.  My first thought was "What the hell are you asking me for?!  You're the doctor!"  But then I realized she was being a good doctor by laying out all the pros and all the cons for her patient so he can give his (presumably) informed consent.  I didn't want that responsibility because it was a lot closer to a life or death decision than I had ever come -- and my life to boot.  For an instant I wanted to have everything taken care of by someone else, someone who knew exactly what to do and who would make things all better.

I said yes.  From what I've learned, for people in my situation (my age, my tumor, my current health condition, my luck), if you're going to do chemo, do it early and do it hard along with the radiation.  Even though there's a possibility of kidney damage, it can be managed.  The discomfort (and in doctor-speak that can range anywhere from mild irritation to head-splitting agony) will be temporary.  In short the benefits will outweigh the risks.

So if tomorrow's biopsy doesn't turn up anything serious, I'll come back to Lakeland Regional Cancer Center in a couple of weeks to learn what my chemo regime will be like, do my radiology simulation, and become a front line foot soldier in the battle against cancer.

Who Cares About Apathy?

As is oft said, cancer changes your life.  It can be unpredictable and demanding.  What I've found is that it's controlling my life in some pretty mundane ways.

It not only takes your health, it takes your time.  I can't say for other forms of this disease, but with MCC there's always a sense of urgency.  Everything is subservient to your treatment, or preparation for treatment.  As I mentioned in an earlier post, I found out I had MCC, and two days later, I had an appointment with a surgeon.  A week and a half later, I had neck surgery.   After a short breather,  I had two doctor appointments in one day which set me up for the triathlon of cancer treatment: four doctor appointments, each with a separate doctor and two different scans, all in one week.  I figure the only reason I haven't had an EKG is that I've proved already that my heart can handle stress.

To be fair, some of the doctor appointments were scheduled before all this MCC business started, but I still had to account for them and weave them into my job and free time.  No wonder I'm always tired; I'm scared to imagine what I'd feel like if I were actually sick!

A cancer triathlon is not like an ordinary triathlon -- triathlons generally have a set route that doesn't change and you get a chance to see what the whole route looks like before you start.  Again, this is only my observation, but the cancer triathlon is like a regular triathlon route littered with signs, each one telling you which sign you have to run to next, with the added wrinkle that the officials are continually moving the signs around, and sometimes stopping you in between signs to tell you new directions!  This uncertainty can be quite vexing.

So... we have serious disease with an uncertain prognosis, it puts you into a grueling race that runs hither, thither and yon, and you have very little control over where it's going to take you if you want to finish the race in one piece.  What's a body to do?

The only thing I can recommend is Apathy.  I'd been nursing and tweaking this philosophy for a couple of years before MCC, but now I've had a chance to give it a good hard workin' and it seems to be bearing up.  I call it Apathy, but it also goes by other names like The Serenity Prayer, Healthy Denial, Let Sleeping Dogs Lie, One Day At A Time, Don't Borrow Trouble, and Matthew 6:27.

Apathy lets you decide what's important and what's not.  You get to choose what to worry about, and let the rest slide.  You get to decide exactly how much stress you want to take on and when.  Yes, you are important, but you've got a serious disease to deal with right now, so let the others take care of everything else so you can concentrate on getting yourself better.

Talk about it

This cancer stuff is tiring.  It's not just the physical aspect of fighting off all those rogue cells and surviving the treatments, both chemotherapy and radiation, that drag your energy down.  There's also the subtle but constant emotional tax of facing your own mortality that saps energy too, and if you're like me, the uncertainty of whether you're going to outlive your new car's warranty takes its toll too.

There's not much you can do for the physical strain; it's part of the territory.  You CAN do a little something about the emotional part though.

Talk.

I know, you don't want to bring everybody down by whining about your stupid ol' cancer.  Think how lucky you are!  You're getting helped!  New drugs!  New treatments!  Things are a lot better now than they were even 10 years ago!

But somewhere in the back of your mind, you're thinking: "It's not fair!!  I didn't smoke (or drink, or get sunburned, or didn't eat meat or...  Pick your virtue.) and HE did, and I have cancer and HE doesn't!"   Or you're thinking "Phooey!  Self pity isn't going to do any good, so let's just can it right here and be happy and upbeat!"  That's a dandy attitude to have and personally, given the choice between that and feeling sorry for myself, I'll choose upbeat pretty much all the time.

A thought about being upbeat:  I know there are lots of plucky individuals on TV and in the newspapers who are always a-smilin' and never seem to have a bad day.  There's no way in the world that you're going to convince me that they're like that all the time.  I'm sure they have bad days too, days when they just get tired and wonder if it's all worth it.  They wouldn't be human if they didn't.  If they can have bad days, why shouldn't you?

So what do you do?  It takes work, and we already know we're tired from this disease and treatments, and you've got a bratty kid, and the shower leaked soaking the carpet and gas prices keep going up.  Where does the energy come from?

Other people.

I found this out when I dropped the bomb at work that I'd have an erratic schedule because of chemo and radiation treatments.  Everyone's jaw hit the floor pretty much at the same time, because I hadn't mentioned anything about cancer with a big C.  Sure, everyone knew I was constantly at the dermatologist having SCCs and BCCs cut out, but that was cancer with a small C.  I turned it into a joke because I knew that the mortality rate for these cancers was practically nil, so I could afford to joke about it.  But MCC is cancer with a big C, something no one has a good idea about, something rare, something you could die of.

So after I dropped the bomb, I started getting emails (we IT people never talk directly to each other, we use email and instant messages and blackberries, even if we're sitting right next to each other) from my friends about how sorry they were to hear the news, that if there's anything they can do for me... and so on.

And it felt good.  I think the psychologists call it "validation", meaning that what we are and what we're feeling is real and proper, that we have a spot on this planet that cannot be filled by anyone else in the universe, a spot that will never be replaced by anyone else, even after were gone.

It's going to be up to you to broach the subject.  My method of dropping the bomb may not the best way, but I couldn't think of any other way to do it (You: "Mornin' Paul, how's it going?", Me: "I have cancer.") but the important part is that it gets done.

And (this is important): you must talk back.  Tell them that you appreciate their thoughts and concerns.  Tell them that you don't know what's going to happen.  Tell them that you're scared.  This lets them know that there's a human being out there.  No one wants to help superman, because superman has it all under control, we'll just get in his way.  By letting them know that you are in no way related to superman, you give them permission to help.

This is important too:  Believe what they're telling you.  They are sorry it's happening to you.  They are willing to help with anything you need.  They do care about what happens.

I had trouble for the longest time with this.  I was afflicted with a very responsible upbringing and was taught to be reliable, conscientious, productive and self-sufficient.  Nothing wrong with those virtues unless they're taken to an extreme.  The first chink in that armor came with the first kidney transplant and dialysis, keeping me from being fully self sufficient.  I managed to overcome that by becoming ultra productive, after all, I had to be worth all the effort and electricity and medicine and stuff that kept me alive!  You may be burdened by other equally unrealistic (and stupid) beliefs, but whatever they are, don't let them get in the way of accepting help from others.  It took me the longest time to believe that someone might think me of value simply because I was a nice guy. 

I was talking to Mike at work the other day warning that I had absolutely no idea of what my chemo and radiation schedule the next couple of months was going to be.  He said "Yeah, I know.  I have a friend who's halfway through chemo and radiation now."  That felt so good to hear!  Not that I was happy that someone else was afflicted, but that here was someone within arms reach that had an idea of what lay ahead for me.

So talk about what's happening to you.  I'll bet there are more people than you know who want to listen.

Down In The Mouth

Was an o.k. day today.  An official day off of work which means I didn't have to take a sick day or wheedle anybody to cover for me.  I'm fortunate that I can work from home, and have great co-workers that will cover a few hours in the middle of the day if necessary for me to disappear for a doctor appointment.  It's tiring though, keeping track of where I'm supposed to be, keeping all my doctors up to date, keeping track of future scans and appointments and trying to keep my job.

Today I spent about an hour and a half at the dentist prepping for head and neck radiation.  Radiation in this area slows down or stops the salivary glands so that your mouth gets dry.  This increases the chance for subgingival caries which is fancy dentist-speak for cavities appearing under the gum line.  They're more difficult to deal with and more prone to infection, which is very bad for a radiation patient with a low white blood cell count.  The dentist made up some dental trays that I'll wear at night during my radiation treatment that I'll fill with some goo that's full of fluoride to help protect my teeth.  I also walked out with prescription mints (seriously!), a little bottle of fortified mouthwash and another type of fluoride treatment that I'll brush with after dinner.

By the way, the magic ingredient in the mints is Xylitol, a type of artificial sweetener that also promotes saliva production.  I think this is the gimmick in the gum that 4 out of 5 dentists recommend.  The simple act of sucking and chewing on gum increases saliva production and the xylitol in the gum promotes it that much more.  All that saliva helps wash the food particles off your teeth which helps prevent tooth decay.  Another industrial secret exposed!

After the dentist and lunch, I went back to LRCC for another blood draw to prep for my guided needle biopsy -- some sort of clotting test.  I'm not really looking forward to this biopsy.  If they don't put me to sleep for this, I'm going to ask for tranquilizers or sneak some Jack Daniels into the OR.  There's got to be some kind of primal resistance to having needles stuck in your neck -- its just not natural!