What to say when someone gets cancer

I've been off of this blog for several days. I've been processing. One of my friends now has cancer. Another friend's mother died and I went to the funeral Friday. My dad is dying. And it is fall, a time when the leaves on the trees are dying. I'm not trying to be morbid. This is a season. It is a season that I am passing through. I won't stay here anymore than winter will stay. Spring soon will burst through the ground in all its glory. But as I said, it is a season and I am grieving for various losses.

 I am also wondering what I will say or not say when I finally see my friend that has cancer, face to face. As I have been rather preoccupied, I’ve decided to reprint a great article from psychology today called, “What Do I Say When Someone I Care about Gets Cancer?” The author is Dr. Mindy Greenstein.

What Do I Say When Someone I Care About Gets Cancer?

Making a lonely, scary experience less lonely and scary.

Published on May 10, 2011 by Mindy Greenstein, Ph.D. in The Flip Side

My father's best friend, Mendl, whose name was very close to my Hebrew name, Mindl, died of cancer when he was fifty.  I was eight.  There had been lots of illnesses before, but cancer was a whole new ballgame when it came to sickness.  The word itself seemed to strike terror in the grownups as no other diagnosis did-as if saying it out loud was enough to cause damage.  Other illnesses seemed like defects, mistakes with unfortunate consequences.  But cancer felt like it had an actual personality, an evil intention to turn your own body against you bit by bit.

So the big C was discussed only in hushed tones, with innuendo replacing words.  Normally, the grownups were only too happy to discuss in great detail every pinch in someone's pancreas.  I soon learned that when they talked about a sick acquaintance with "you know," that the "you know" must be that bad one.  Or else they would refer only to the hospital where their friend was being treated.  As soon as they mentioned "you know, Sloan-Kettering," I knew the person was doomed.  Because of their accents my parents pronounced it as "Sloan-Catering."   For years, I had images of white-gloved hands dishing chemo fluids out of sterno-heated silver trays.

I still had that image when, as a psychologist, I trained there in the field of psycho-oncology.  And I still had that image when, years later, I was one of the people to whom the white gloved hands were dishing the chemo.  Only we aren't so quiet about cancer anymore.  And a good thing too. Because of my training, acquaintances often contact me when someone close to them gets the diagnosis.  They want to know how to be helpful.  What do I say? I'm often asked. The problem with answering that question is that the true answer takes a very long time to really understand, but here it is:

 

Get comfortable with your own mortality, and you won't even have to ask the question. 

Think about what often happens inside our heads-with different levels of awareness or lack of it-when you hear your friend has cancer:

Oh my God.  That's so terrible.

Oh my God.  If it could happen to her, it could happen to me too.

 

I'm scared.

At least it's not me.

 

Oh my God.  Did I really just think that?  I feel terrible.

With all that going on in your head, it's no wonder there isn't much room for just being yourself.  So, the first lesson in how to be helpful is recognizing that you won't always be helpful.  Sometimes, you'll be downright stupid.  But hang in there.  Research shows that the single most important factor in coping with cancer for many people is their social support system.  It's ironic that mortality is one of the few attributes we share with every single other person in the world.  And yet when we're dealing with it ourselves, it's the loneliest feeling there is.  Your friend needs you, even if, sometimes, you'll be an idiot.  Recognize also that, sometimes, there's a limit to how many brownie points you'll get for getting it "right."  This is especially true for health professionals.  When was the last time someone came home after a doctor's appointment and said, Harry, guess what?  I just found out that I have cancer.  But, you know, the doctor told me in such a nice way that I feel fabulous, I really do!  My own doctors behaved very badly during the diagnostic process, which is not uncommon. But more on that later.

This is the first of a series of posts—from both sides of the hospital bed—about the experience of having cancer, both for cancer patients and the "not yet sick," as Paul Cowan mischievously referred to everyone else.  If we can learn to bridge the gap between the sick and the well, maybe we can make illness-even one that feels as malevolent as cancer-a little less scary and lonely for everyone. 

Next week: What Not to Say to a Cancer Patient

hint #1: what you say may mean more than you think it does

hint #2: sometimes, it's not what you say that's important, it's what you say next

hint #3: sometimes, it's time not to say anything at all, and just listen

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A Vicious Cycle Pain, Lack of Sleep, Migraines

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Sometimes I feel like I'm stuck inside this wretched cycle, like a hamster on wheel. Because I have Polymytosis, Fibromyalgia, Mixed Connective Tissue Disorder, Rheumatoid Arthritis, and Raynaud's syndrome (and other things) I experience chronic pain. Now you would think I would down pain meds like M&M's right? Wrong! If I did that, first off the pain meds wouldn't work well when I really need them, 2nd pain meds are metabolized by the kidneys and liver. Because these organs are rather vital to life and I'm rather attached to them.  I don't want to mess them up any more than the meds I'm on already have. This means I am always in pain, always.

Unfortunately, many times even through I'm exhausted I can't sleep. Sleep is when tissues repair themselves (this is important when your immune system is attacking your body). So if you don't sleep your pain can go up and because you are tired your tolerance for pain goes down. When you are tired, at least for me, my chances for getting a migraine skyrocket. It isn't a question as if I get a migraine, the question is when. The following article explains what I figured out a long time ago: 

Lack of Sleep Can Trigger Migraine Proteins

Direct link between migraines and sleep deprivation.

Published on July 23, 2010 by Michael J. Breus, Ph.D. in Sleep Newzzz

Anyone who suffers from chronic headaches or worse, migraines, knows that lack of sleep can sometimes be the culprit. And anyone whose been victimized by a migraine also knows that losing sleep can be a trigger for these excruciating and often debilitating special types of headaches. I've talked about the connection between headaches and sleep--or lack thereof.

Now we have more evidence that shows the link between sleep deprivation and migraines in particular: pain researchers from Missouri State University report that rats deprived of REM sleep showed changes in the expression of key proteins that suppress and trigger chronic pain.

In other words, the quality of sleep was associated with whether or not the rats' nervous system was aroused (hence leading to a headache) or shut down. At the center of this observation was the existence of specific proteins that orchestrate the nervous system's arousal or suppression.

In the study, the researchers deprived one group of rats of REM sleep for three consecutive nights while allowing another group to sleep normally.

They found that the sleep deprivation caused increased expression of proteins p38 and PKA, which help regulate sensory response in facial nerves thought to play a key role in migraines, known as the trigeminal nerves.

Lack of REM sleep also triggered increased expression of the P2X3 protein, which is linked to the initiation of chronic pain.

About 12 percent of the population, or 36 million Americans, suffer from migraine headaches. Migraines still elude scientists; sleep disruption is one of the most important migraine triggers, yet very little is known about the molecular pathways that link sleep to headache pain.

So for now the best we can do is try to control them through medications when they strike and to take preventive measures that target potential triggers. People who suffer from routine migraines typically have powerful drugs on hand to aid in enduring a migraine when they occur, but often preventing the throbbing pain from even starting is the best medicine. It can become a catch-22once the migraine takes hold: it becomes hard to sleep due to the pain, which then fuels the cascade of events that keeps the migraine pulsing.

Making sure you get enough sleep if you're prone to headaches or migraines won't always stave off pain, though. What's more important is keeping the same sleep schedule. Ever gotten a headache or migraine on a day you slept in? Well, yes: you can get too much sleep! If your body is used to rising at 6 am during the workweek and you suddenly switch to 9 am on the weekend, guess what: you've just given your nervous system a reason to summon pain. The body likes routines. And it especially likes consistent sleep routines.

What I love about studies like this is that they have longitudinal implications across other areas of medicine. If we can learn how to prevent and treat a migraine, we can probably learn a lot about pain in general. And if sleep is a key to that treatment and prevention, then getting restful sleep is once again proven to be as much a part of health as any other vital sign of life

http://www.psychologytoday.com/blog/sleep-newzzz/201007/lack-sleep-can-trigger-migraine-proteins

Art, Abilities, and Collage

I love the idea of mixed media on a canvas. Actually, I love any kind of art. I believe everyone is capable of making art but it takes practice and I need more practice. I’m getting into this venue late in life.

 I've done it in art journals; the things I have done have turned out OK. Hey, Van Gogh I am not. However, I am improving with practice. At the moment, I have no idea what possessed me to attempt to put mixed media on canvas. But in a moment of lunacy, I started two days ago. 

I prepared two canvases with gesso. I found a poem of mine that I wanted to incorporate into the piece of art that I was going to make. I decided I would include the face of a clock in the piece because the poem talks about taking things one second at a time, one moment at a time, etc… I found the perfect set of Roman Numerals to use in the piece and I printed them out.

I carefully placed them with the Mod Podge on the canvas and left it overnight to dry. When I got up yesterday morning, the things I Mod Podged so carefully hadn’t adhered to the gesso correctly. Do you know what a pain it is to peel off half stuff on pieces of paper off a canvas? It is horrid. Then I had to sand down and gesso again to begin the process anew.

I got half way into the project (with a new layout of course) and I hate the way the paint adheres or should I say doesn’t adhere to the canvas. If you use the acrylic paints like a watercolor wash it looks great but every cut of the paper shows. ARGGGHHH!

Well, at least I learned some valuable lessons about working with decoupage on canvas. And no, I did not take a picture so you can see this shameful piece of unmitigated failure. I also learned that I need a protractor (or to find which one of my adult kids ran off with mine), a yard stick and some new paints. So I will start over this time with a different brand of Mod Podge like glue and see what happens. With luck I’ll let you see the picture. Carpe Diem ... Carpe Canvas

It isn't enough to join a gym; you actually have to go

Does anybody really want to go to the gym, do they; do they really? I think if they were honest with themselves the answer would be a big fat NO! However, I’m certain that with joining a gym the intention of using the gym is actually there. So it isn't enough to join a gym; you actually have to go.

It was about a week ago that I joined the gym in Ephrata. Today was the first feasible day that I could go. So since my motivation for the day was that I paid good money for a gym member (because who in their right mind actually wants to exercise), I best go or my husband will be mad for wasting money.

I know that the real reason behind joining the gym is the same as it was.  My motivation to join the gym was and is to get healthier and to delay total knee replace. I know when I went to physical therapy for my knees; I experienced less pain and had more stamina. I want to get this back. I also want to tone up since I have lost so much weight. I’m now close to a 100 pound weight loss and I don’t want to look like a lumpy bad of mashed potatoes when I’m done losing all the weight I want to lose. 

Surprise, doing the exercises that I previously done at physical therapy in an “endless pool” was much nicer in a real pool. I was a very nice experience. The pool area wasn’t nearly as humid as it was on the day that I toured the place. So I physically could breathe easier (Asthma, don’t you know). 

There were two things I didn’t like about the gym. First off the area around the pool was tile and there for very slick. I need to get crocs or some other type of shoes like them so I don’t fall and break something that hasn’t already been broken or previously damaged. With being on Methotrexate due to Mixed Connective Tissue Disease, healing is a bit of a challenge (as it is when you have most chronic illnesses). Second, the handicapped changing room is a co-ed changing room.  Yes, they have curtained areas but I don’t feel comfortable changing in there and the women’s changing room was way down on the deep end of the pool and it was too slippery to get there safely. I choose the non-option which was changing in a real door separate room handicapped bathroom.  Next time I’ll bring a croc and go to the women’s changing area.

Source

  

If you haven't discovered joy-of-cartoon-pictures.com , please visit their site. They encourage the sharing of their awesome cartoons; they have some really funny ones. Hope you enjoy their site.

Living with Multiple Illnesses and Hope

I wanted to get this done long before September 16 (the beginning of Chronic Invisible Illness Week).Why? Because I have to make the most of the days when I feel half decent. I even had most of this written but I just didn't even get as far as the first proof read.

Far to many of my days seem lost due to migraines,or pain running rampant through my body. Many days my arms, elbows and hands refuse to cooperate. Today is the second day in a row I have sliced my fingers instead of the vegetables I was chopping. 

All encompassing fatigue frequently steals my days, leaving me not only feeling like a bedraggled dish rag, but  also spending the day in bed. So learning planning ahead is one of the lessons I've learned due to my multiple illnesses. 

To be honest, there is no way I'd make it on my own with these illnesses. I have a supportive family, some wonderful friends, a fantastic therapist. But in the midst of my pain and suffering their is only one that fully understands me completely. That is because He made me; He made me just the way I am. He knew in advance everything I would ever do, and He still died for me. I don't know why He hasn't healed me this side of heaven, and that is ok. He has His reasons. All I know is through it all He is with me.  He is the one I can call on at any day or hour and He will always be there for me, even when I don't feel it. When we don't feel it, it is called walking by faith. 

The week of Invisible Illnesses was about Visible Hope. That week has come and gone. Unfortunately, my illnesses have not, but then again neither has my faith and hope left either. Some may say that not only are my illnesses invisible, but so is my God. To answer that I'll use the words Billy Graham is famous for saying, "I’ve seen the effects of the wind, but I’ve never seen the wind." I too have seen the effects of God in my life and therefore He is my visible hope. I know He is there even when I'm in pain. 

Please enjoy the following YouTube Video sung by Mandisa: He Is With You

Gym Suit, Swim Suits... And Yucky Exercise for the Chronically Ill

Yes, I'm back on one of my least favorite subjects. I didn't know this would rise to my second least favorite subject. Well, that wasn't until I got scheduled for the nasty colonoscopy on Oct 8th; but (not pun intended).

If you read my earlier post on exercise you know how horrid memories of gym class haunt my mind. I still have visions of ill fitting gym suits which give me nightmares. Do you remember the ones I mean. They were retched all in one things, that looked like shorts attached to shirts and had a zipper running up  back. Mine had royal blue bottoms with a stripped top. Talk about poor taste, one size fits none, and is not flattering on all (not even on the cheerleaders).

Anyway, I took the big step today and jointed the Ephrata Rec center. So I will be exchanging my ill-fitting gym suit of days gone by for a plus size swim suit. No it will no be a plus size bikini. In my opinion such things are obscene - or should I say, "should not be seen, at least not on me".
However I hope my plus size swim suit is one that I hope to out slim.

You see I've already gone down several sizes and I have several more to go. But the best way to get healthy is through the healthy lifestyle changes I've already made (no artificial dye, colors, preservatives, more organic foods, and leaner food choices) and add exercise. I have also gotten rid of doctors that I don't feel are giving me adequate care (I've mentioned that before).

All I did today was sign the papers at the Rec center; however, it is a start. Next time I will start water walking. Will I build up my stamina and then I will start working out on building strength on some of the weight machines.

As Randy Glasbergen says in one of his fantastic cartoons: "What fits your busy schedule better, exercising one hour a day or being dead 24 hours a day".  

Colonoscopy... You Want to Stick What, Where!

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Time for a Stick Up

My birthday is fast approaching and this old gal will be 52. That is both good and bad news; the good news is I have made it to basically 52 years of age on this side of the sod. Now for the bad news; is it is time for a stick up. Yup, you guessed it; the doctor says it is time of a colonoscopy.

The doctor called it a “surveillance colonoscopy”. What are they going to do; send a miniature spy team up there and take pictures of incriminating evidence? Geez! Evening a screening test at this point sounds bad. Picture Miss Suzy’s screen test; let’s just say I don’t think my hind side is not my best side for a screen test. To me this just feels like a robbery and somebody yelled, “Stick ‘um up”.

Too Many Doctors So What’s One More - Gastroenterologist

Normally when your Internist/family doctor orders a colonoscopy, it means going to see a gastroenterologist. Basically, this is a doctor that enjoys looking down mouths and into your stomach or up peoples colons through special tubes all day long. It is a wonder these people can look people in the eye afterwards

There really isn’t a problem with seeing a gastroenterologist; however, what happens if you cancer is found during the “stick up”.  Then you would need to see either a general surgeon or a colorectal surgeon. If you have as many doctors as I do, the very thought of adding possibly two more makes me sick. So I found a colorectal surgeon that also does colonoscopies.

The Basics

I have had an upper endoscopy before (this is where they look down your throat and into your stomach with at tube which requires you not to eat after midnight). From that I learned that the actual procedure of having an enormous tube shoved down an orifice doesn’t hurt do to the anesthesia. As a matter of fact, most people have no memory of the actually procedure of either an upper endoscopy or colonoscopy. However, the worst thing able a colonoscopy is the prep.

http://featheredfibers.wordpress.com/2008/03/19/public-service-announcement/ 

They say, “What goes up must go down”. Well I say, “What when in must come out”. Hence the principle of the prep of a colonoscopy, in doctor’s terms that will say to you is that “The prep is used to clean you out. If the 

prep isn’t done as directed and you aren’t completely cleaned out, both the prep and the procedure will need to be rescheduled”. I don’t know about you but after you hear about the prep (if you haven’t heard urban folklore already) there is NO WAY I’m repeating it).

The Prep

I’m not going into great details as each doctor has his own “cocktail drink” or version of liquid laxatives or the 32 pill version that was approved by the FDA that you can take to clean you out. If you are poor or have kidney problems the bad news is the pill option is out for you. You will be stuck the “cocktail”.  I’ve heard tails that it tastes horrible. I have no point of reference but you can either drink a ½ gallon (the cheaper option) or a quart of liquid (an expensive option that might not do the job). The choice and risk is up to you. Follow the instructions to the letter and pray everything comes out ok in the end. Pun intended.

I’ll let you know how this …went… when I have a point of reference. My only laughing point is that later in the month of October, I’ll get to laugh at my husband as he has to go through the same thing. He’ll be turning 52 too. 

     The above video is from YouTube and called Lookin Up My Back Door


*Thanks Carla Barrett for the great chicken cartoon