Andrew's View of the Week

I had fully planned to write a post for this blog on Wednesday but by mid-week I just couldn’t muster the mental energy.  Today is Sunday and after two days off work and the treatment schedule I’ve finally found the energy and time to knock out some writing. But more than that, I’ve gotten to a place where I need to write.  Who knows I might write two posts so I’ll have something later in the week when I am feeling weaker.

When I started out on blogging about dealing with this cancer I thought that I’d write something every three days even if it was something short and not well thought out.  Turns out I can’t do that.  I tried a couple of times last week to write these three sentence posts with bad jokes and random complaints.  But just before I press the “publish” key it felt wrong and I deleted it.  (I do that on Facebook and something in me said that these blog posts should be for other purposes.)

So today I’ll move the conversation to a higher plane and give you the obligatory “What to say to a cancer patient” post.

Really.  I promise – here is everything you’ll need to know about talking to people with cancer.

Well. Why? First I’ve always wondered myself and if you surf the internet enough and look up people keeping blogs about their cancer they all have a post that deals with the question.  Many on-line support forums have conversation threads that discuss the matter and there are a wealth of articles on the subject.

Naturally being a cancer “victim,” “fighter” and a “survivor” (I am working on a post about all the things we label people with cancer that seriously annoy me) I am an expert in what to say to a cancer patient.  Just ask all the people who wrote the blogs, posts and articles noted above – just being cancer patient gives you an authority and credibility that none of you “normal” people have.  I am not sure what it is, but I am guessing that cancer cells somehow change your brain, neurological processes and presto you get wisdom you’ve never had before.

I wonder when that kicks in?  It’s almost two months and I don’t feel any wiser yet.

I’ll admit that I don’t really know the “correct” answer,  (wow, I am using a lot of quoted words today).  But I do hold a BA in English and have great research skills so I went and looked it up for you.  I’ve read many blogs and articles on the subject and after being sensitive to all these author’s needs and feelings on the subject here is my list of what you can say to a person with cancer:

Nothing.

Yup, nothing.

My goodness but these cancer folks are a pissed off bunch. I checked all the things on my list that I’d say to someone with cancer an it was on someone’s list of things not to say. I read one source (I won’t cite) that said they found even saying, “that sucks” is offensive to them – offensive is the word they used.  My reaction was – whoa, dude, chill.

Now I should say that most of the authors who I am talking about have a post or article titled more like this, “What not to say to someone with cancer.”  But one of the lessons my father taught me was to try to put everything into positive terms so I turned the question around to its positive version.  I tried looking up sources on what to say but the number of good sources was thin so I had to look up the negative just to get some material for this post.  Seems like the world prefers to be negative and offended rather than positive and forgiving (mini sermon over).

After all this academic research I’ve decided to reject every thing I’ve read and to offer the following list of what to say.

But first let me offer an observation on dealing with us wise cancer patients.  We’re a mixed bag and how we’ll react to you depends on where we are at the moment.  Shortly after someone gets the diagnosis of cancer, anger is emotion of the day.  It really is upsetting and often there is no one or thing to blame for the cancer so the anger gets directed at any target in sight.  The life change that cancer forces is hard to describe and the possibility that it could end your life is hard to ignore.  Anger is a natural response.  So when your friend tells you they have cancer understand that, yes, they are likely pissed off and will react to almost anything you say with anger.  Depression likely will follow and your friend the cancer patient will likely not want to talk about anything.

Once treatments start the whole picture changes.  Physically ill, in pain, fatigued and depressed is likely to be some of the states you’ll find your friend. What can you say to comfort someone there?  I don’t really know but I’ll tell you that it’s not the same thing you say to someone who has just got the news.

All you can do is to be sensitive to their needs of the moment.  If you can’t be sensitive – just shut up.

So here is my promised list of what you can say to a person when you learn they have cancer:

• Dude!
• Holy crap, that sucks, (or any four letter word or combination that expresses shock while still maintaining a hint of empathy).
• I don’t know what to say (but only if you don’t know what to say)
• I’ll pray for you
• I’ll be thinking of you
• If you need someone to talk to, I will listen (and please if they say they need to talk, keep your mouth shut and let them talk, please)

Avoid this: “If there is anything I can do, call”  Chances are your friend doesn’t know what they need and the question is a bit of a burden at this stage.  Instead offer to do something specific that you know you can do. Something like, “If you need a ride to an appointment” or “If you need help with house/yard work?” Or my favorite – “I’ve got a collection of bad 70’s and 80’s science fiction movies, want to borrow some?”  (and yes a friend has provided me with “Attack of the Killer Tomatoes” now I am looking for a copy of “Swamp Thing”). More importantly don’t offer unless you’re sincere with the offer of help.  If you can’t give physical help to your friend, then a simple, “I’ll be praying for you” is the best gift you can give.

There is nothing I value more than knowing that I have true friends who are willing to stay with me while I travel this road – even if only in prayer and thought.

Once you know you’re friend has cancer what do you say them?  Well, how about just normal stuff.  Frankly I get tired of talking about this cancer thing and for just a few minutes I’d like to live in a world where my life didn’t suck and I was facing a future dealing with medical problems.  So please ask me if I’ve read any good books or did I see the game last Sunday (and I did – can you believe the 49er’s fumbled away their first chance in a decade at the super bowl – dudes what?, man).

But I’ll tell you now that if you ask, “how are you?” to be prepared for any number of answers – some likely to be inappropriate and rude depending on how I’m really feel that day.  So let me apologize in advance if I ever answer that question with a long string of four letter expletives…

All I can really say is that I know it is hard to talk to someone like me.  You want to be supportive and helpful.  You’ve got some great advice to give.  You’re uncle Bob just found out and you’d like to learn more about my disease. You want the latest news about me.  You still want to be my friend but you also want to give me my space.  wow – you’re conflicted…

So the point is that all those blogs and articles are wrong.  I am still your friend.  I am the same person you used to be able to talk to.

So just talk.  Just be honest. Just be caring. Just act from love.

It’s that simple.

Today I started my treatments.  Not as bad as you’d think but still I’ve got awhile to go.  We (my wife and I) chose to do external beam radiation as the primary treatment and today I finally started what is going to be a six week treatment plan.

There are a lot of treatment options and given my overall health and age this course made the most sense.  Let me explain how we got to this decision.

After the shock of “the call” wore off and I was able to think again we got an appointment at the cancer clinic.  First my urologist emailed me some links to information and the cancer clinic’s web site. Then both Heather and I did our research and we made this long list of questions, and printed it out.

At the first appointment in the clinic we met with a nurse, urologist and radiation oncologist. The first thing they did was to give us this folder with all kinds of information – basic prostate cancer facts, treatment options, lists of resources and a printed copy of the pathology report.

The nurse showed us all the info and had us watch a short video on the clinic then the urologist came in.  She the went though the pathology report line by line explaining what each item meant and where I was in the scale of things.  For those of you who want to know here are the basic stats: 2 out of 14 cores with cancer cells, Gleason 3+4, stage T1C.  I won’t bore you with the other details. Basically this is an intermediate stage cancer that is most likely contained in the prostate, probably – maybe a little on the edge there on the lower left.  Mostly good news but still something was there.

That answered about a third of the questions on our list and made some pointless to ask.

There are a number of treatments and it boils down to about 5 basic choices (of course there are variations but basically this is the list):

Active surveillance (or watchful waiting) – do nothing and see if it gets worse
Surgery – yup, rip that sucker out.
Drugs – hormone therapy
Brachytherapy – stick radioactive seeds in to the prostate
External beam radiation – sit in front of a linear accelerator for six weeks

Personally I was hoping for the do nothing option – I’ll just go home and come back when you’re not so busy with all these sick people.  Okay?

“,”No said doctor.  “This cancer needs to be treated.”  What was annoying about that answer was that she pointed to the pathology report and the factors that indicated treatment.  I hate it when they are right.

I have a bit of high blood pressure so the urologist thought hormone therapy wouldn’t be a good first choice.  We ruled out surgery because of concerns about my breathing and weight while under general anesthesia that came up during my gallbladder operation.  Surgery would be a good choice but not really worth the risk factors for me. And I really didn’t want surgery – I told the doctor, “If I am dying you can operate. Otherwise I am still using my prostate and if there are other treatments I’d like to try those first.”

She agreed and that was it for urology.  She handed me back the report, looked at our list of questions and said, “I think radiation is a better choice I’ll get the other doctor.”

Then the radiation oncologist came and quickly agreed with his colleague. I was interested in the brachytherapy where they implant the radioactive seeds because it would be a one time treatment.  Well turns out that would require general anesthesia and would have some of the same risk factors as surgery.  Also the pathology report showed a slight chance of there being some cancer on the capsule that surrounds the prostate.  The doctor explained that the seeds don’t always get that but the beam radiation can be set to do that.

Well then – there ya go.  External beam radiation here I come.  I’ve always wanted to play with a linear accelerator…

Frankly I thought the choice would be harder but the facts in my case just dropped right into place and the decision made itself.  I do credit the doctor with a bunch of sensitivity and not pushing us to a decision.  We all thought beam radiation was the best choice but he said, “Well, why don’t we see if it passes the sleep test.  I’ll send a note to your urologist about what we talked about and you let me know later in the week what you want to do.”

I was very sure at this point that I wanted to proceed with the beam radiation.  All the answers to our question in the sheet made the choice quite clear.  He did agree to tentatively schedule the next step in the process but he would still have a staff member call in a few days to confirm.  I like my doctor.  Cool dude – haven’t found out if he’s a surfer yet but he looks like he could be a suffer dude.  Bet he drives an old beat up VW bus and has the Santa Cruz tide tables memorized.

Anyway, the decision did pass the sleep test and it was off to treatment land.  They give you this long list of possible side effects that sound scary but I am not going into that today. I’ll just report what really happens.

The treatments started with the placement of gold seeds into the prostate.  Yup – back to the biopsy lab and have things put in rather than taken out.  Read my post on the biopsy for details.  Same fun but only three sticks not 14.  I’ve been telling my friends that I now have gold balls.  One friend asked, “I thought it was brass?”

My reply, “You need brass balls to let them stick gold balls up your rear.”

Then you have to wait for about ten days for the next step which is a ride in the CT machine that they call “simulation.”  Here is the text of an email I sent to a friend describing the procedure:
———-
Today I got a CT scan to verify the targets in my prostate and create the treatment program which included fun activities like getting shaved, having “permanent markers placed” and getting “contrast” injected into the prostate. 

Guess where they shaved.

The contrast goes in the output.

Now I have three little tattooed dots on my hips and where they shaved so at the next visit they can accurately place my body back on the machine.  When they said “permanent” markers I wasn’t thinking it would include ink in a needle – something else I got wrong.

Before the little treatment they had me drink 32 oz of water so I would have a full bladder – let me tell you how fun that was to lie still for 20 minutes when I really needed a toilet.  Well I did manage to stand up without flooding the floor and I guess Heather is right – I can move fairly fast when properly motivated…

Other than that I am having a great day. 🙂  <- SEE MY SMILE.
————

My friend’s reply was, “Great a man turns 50 and the next thing you know he’s shaving body hair, getting tattoos and drinking heavily.”

For the record – the water drinking part was the worst, so over all not a bad deal.

After simulation I had to wait another 10 days while the doctor checked the scans and programed the data for the real treatments.

Today was my first real treatment.  I’d like to complain about the procedure but I can’t.  It was easy, painless and the staff at the clinic treated me great.  The only thing that was weird was the water.  For every treatment you have to have a full bladder.  The instructions are to drink 32 oz of water an hour before the treatment.  And then don’t pee until and 90 minutes later – after the treatment. And you have to lie completely still for the last 20 minutes.

So if that is the only thing to complain about. Cool.

I’ll be doing periodic updates on my treatment with a few supplemental posts on prostate cancer related topics I’d like to pontificate on.

Let me take a break from history for a moment and give you some current news.  I have another appointment at the clinic later this week and if all goes well there I’ll be starting my treatments right after that.  I had hoped to be completely up to date with my history posts by the time treatment started but that isn’t going to happen.  Writing often has an energy of its own and I am finding that writing this whole story has been a great relief and greatly removed much of the fear and anxiety from what is about to happen to my body.

Like it or not, I have now been changed.  I am no longer just Andrew but now have been marked by cancer.  It shifts your perception of health.  It refocuses your priorities.  It brings your true desires to the surface.  I haven’t sorted it all out, but one thing I’ve noticed lately is that I every time I hear someone complaining about a minor health issue I have the overwhelming urge to blurt out, “Well that must suck but let me tell you about my last trip to the cancer clinic.”  Now most times I can resist, but it’s hard. Very hard.

More when I figure out the other changes.

Back to the past.

After the biopsy I was told it would take a week to get the pathology report which would naturally clear me of the charges of being a cancer carrier.  The doctor even made an appointment to call me on the phone.  He was supposed to call on Wednesday but on Tuesday he called while I was at the office with the news.

Here is what I remember of the conversation, “Mr. Reynolds your report came in early and I wanted to call you as soon as I could.”

An observation: Doctors never call with good news.

Then he continued, “Now I don’t want this to ruin you holidays but two of the cores have cancer.  Blah, blah, blah, blah, prostate cancer, blah, blah, blah cancer clinic, blah, blah, bring your wife, blah, blah, blah blah surgeon blah blah blah radiologist blah blah side effects blah blah blah blah any questions? Mr. Reynolds are you still there?”

“Um, yes, oh yeah.  Still here.  Haven’t fainted. No real questions. Just something we got to deal with.  So someone will call me set up an appointment?”  I replied.

“Yes.  The cancer clinic will.  And don’t let this affect your holidays, blah, blah, blah.”

and yes it did affect my holidays.  I am not the best at following doctor’s advice.

So now here is the part of the post where I answer the question, “What do you do when you get that call?”  Here is what I did:

I went back to my desk, put on headphones, set iTunes to sea shanties, started writing a detailed technical report on the finer points of SCM as it relates to ensuring that the  company’s intellectual property is protected and pretended that I hadn’t just received any call.  Sometimes denial is a reasonable coping method.

Then I thought of that damned Tim McGraw song again, and the line, “How’s it hit you when you get that kind of news?”

Yeah, I wish I knew.  I was just stunned and most reasonable thoughts were driven from my mind.  I remembered back to when I got the call that my father had just had a stroke and how I had leapt into action – grabbing his advanced directive, driving to the hospital and bursting into ER to take control of the situation – making sure the doctors did the right thing, reassuring my father and making at least 4 phone calls before confronting the medical staff.  Yes confront.  I can be a serious force when properly stirred up – lucky for the rest of the planet that doesn’t happen very often.

This time I didn’t leap into action.

Then I remembered the day at the urgent care clinic with my mother.  She was having problems breathing and her leg had swollen up.  They did an ultra sound to check things out.  I still remember the details.  The doctor found me in a hallway and asked me to join him in his office.  He had a large bottle of orange juice, a half eaten banana, an empty sandwich bag and the newspaper on his desk.  Pushing the paper away he placed a photo on the desk and said, “I thought I should tell you first, your mother has a tumor on her liver. I’ve called an ambulance and I am sending her to the hospital.” Now I don’t want to brag too much, but when I went into the exam room to tell mother, I was good.  Real good – strong, confident, reassuring and comforting.

This time I wasn’t any of that.

I couldn’t process it.  I didn’t want to go there.

Then my wife called reminding me that she was going to a class that night and I’d be on my own for dinner.  I said, “That’s great enjoy your class.  See you when you get home.”

A braver thinking man might have said, “Honey, the doctor called.  Can you stay home?  We need to talk.”  I am not a brave man and I had let my brain shutdown.

When I got home I had the dinner my wife had left me and watched all the “Red Green Show” episodes I had on the DVR.  Then I sat in the living room with the silence until my wife returned.  I don’t recall thinking about much or even praying.  I just sat and starred at the carpet and turned my mind off.

When she got home I told her the news and she said, “Why didn’t you tell me on the phone? I would have stayed home so we could talk.”

I didn’t have an answer then and I don’t have one now.  But I now have the answer to the question, “What do you do when you get the news?”

I felt like I had been punched in the gut and had the wind knocked out of me.

I was stunned.  I went into shock. I stopped thinking.  I stopped being.

It took a lot of talk and time before I was able to act again.