On Being your Own Doctor

I sure hope none of my doctors read this blog, because I have a feeling they won't like this post.  On the other hand, I wasn't getting a lot of help from them, and desperate times call for desperate measures, ya know?

My shoulder has been a big, throbbing, agonizing trial in my life; quite unfair after what I've just been through.  Yeah, cancer can be life-threatening and scary and time-consuming, but for the most part, it didn't hurt.  This adhesive capsulitis has been harder on my lifestyle in many ways, and that is mostly due to the intense pain.  Even the fact that I can only lift my arm inches high isn't the problem that the pain is.

I happen to have some strong prescription pain pills.  I have never once taken more than prescribed  - until this.  And yet, they didn't touch this sort of pain. It was like taking skittles.  In all my searches, it does seem that there is something about this particular injury that doesn't respond to typical pain methods.  I wasn't about  to ask for anything stronger than I take, so I resorted to hot baths, which gave me brief relief.  I even filled a sock with rice and spent every 10 minutes at work, all day long,  microwaving it and letting it rest on my shoulder, like a limp squirrel, to try to dull the pain.

Picture me, sitting in the Principal's front office, dressed in nice clothes, with a big, fuzzy sock of rice perched on my shoulder.  That screams "superb educational facility" doesn't it?

Lack of sleep has been a problem too, and coupled with the long days I've had to put in at work, my resistance has been low.  I actually called my doctor's office and begged for relief - for something to help me. Begged with tears in my throat.

No response.  Maybe they thought I wanted pain meds.  I didn't, I wanted a nerve block, a hammer to the head - anything.

I suddenly realized something.  I had leftover steroids from chemo.  Some people get relief from steroid shots with this disease (although my doctor said no).  I googled "oral steroids for adhesive capsulitis" and found some citations.

Hey, they'd been prescribed for me, right?  I'd taken them before and they hadn't killed me, right?

What's the harm?  It's worth a try.

So, I popped one.

The next morning, the pain was lessened.  I couldn't believe it.  I popped another, and felt even better the next day.

I'm on day 8.  My pain level is down from a 10 to a 2.  I even have regained some range of motion. I still can't change positions in my sleep, but when I'm still it doesn't hurt and I'm getting several hours of rest at a time.   I am starting to do the physical therapy exercises I was told to do when the pain reduced.  I think this medication helped stop the inflammatory reaction and  has pushed me past the worst stage, and now I can concentrate on recovery.

I know steroids are nothing to toy with.  I am taking them for 10 days, and then will taper off.  I'll take a half the 11th day, a half the 12th, a quarter the 13th and a quarter the 14th and be done.  I'll still have five left just in case that taper isn't enough.

I don't recommend that anybody do what I did.  I recommend that you go in to see your doctor and demand relief.  I recommend you be more assertive than I was.  My excuse: I wasn't getting the idea that anybody was taking this condition seriously, not to mention the misdiagnosis - but I also really didn't want to go in a third time and complain.  I didn't feel like I had the time.

So, I took care of it myself.   I'm self-sufficient that way. And, yes, a bit of a risk-taker.

Anyway, it worked.

It still hurts, don't get me wrong.  But, it's much better, I am not thinking about how much pain I'm in all day long and trying to smile through it.  Now I know I can recover.

The moral of this story?  Throwing old  medications in the back of the bathroom cabinet instead of throwing them away can sometimes pay off.

Maybe those folks on Hoarders are on to something.

Viagra for Cancer

What do you get when you mix Viagra and Rogaine? Hair on your head that stands straight up.

I regularly receive email updates about new breast cancer treatments. You never know, foreplay forewarned is forearmed, or something like that.

I recently opened up my inbox to find this astonishing news:  Get Viagra 65% off!

No wait, that's not right.  What the email actually said was, "Drug Now Used to Treat Erectile Dysfunction May Enhance Delivery of Herceptin to Certain Brain Tumors."

Okay, first let me stop and give a big cigar congratulate Google on their fantastic spam filter.  Because, not once have I ever had a real Viagra ad penetrate added to my Gmail inbox - they always end up sort to the spam folder.  Yet, it didn't filter this one out; I got the Herceptin/Viagra story in my box email where it belongs.   Very impressive.  How did it know my desires interests?  Talk about "enhanced delivery."

All righty then, back to the story.  Herceptin, the wonder drug, has a flaw: it does not cross the blood-brain barrier. The blood-brain barrier was erected designed by nature to protect our brains from dangerous substances, such as bad viagra jokes, but what it means for cancer patients is that certain drugs can't get through to kill swollen bad cells. Herceptin cannot treat HER2+ breast cancer that has engorged spread invaded the brain. Apparently, if you add a big large generous dose of Viagra to Herceptin, it adds enough thrust power to break through that blood-brain barrier and bathe the brain in its heaving healing properties. Not only that, but it raises enhances the effectiveness of the chemo drug, Adriamycin.

That brings up conjures up some questions, doesn't it? Like, who on earth thought to put those drugs together? I suppose the word mastectomy does scream erectile dysfunction, now that I think about it. In fact, the whole idea of cancer is kind of a downer, so never mind.

Anyway, the lead researcher, Dr. Keith Black, a stroke neurology specialist, had discovered that erectile dysfunction drugs inhibited a particular enzyme, which then caused an increase in the permeability of the brain and a surge growth in the effectiveness of Adriamycin. He tested his theory regarding Herceptin using mouse models (oh sure, it's always models who get to try the good drugs) and discovered that it led to a fifty percent rise increase in the amount of Herceptin that reached the brain.

The researchers concluded that adding an erectile dysfunction drug to the herceptin regimen led to a 20% increase in survival, which in medical terms, is massive tremendous.

This exciting interesting research could be an important tool weapon in the fight against metastatic breast cancer.  That's hot good news.

I'm just not sure the world is ready for a bunch of bald, boobless, horny cancer patients running around.

Post-Mastectomy Problems

Regular readers, bear with me as I do a quick recap for newbies:  Immediately after my breast reconstruction surgery, my shoulder began to hurt.   At my two-week follow-up, I told my plastic surgeon, who said give it time and if it didn't go away, he'd refer me to physical therapy.  It didn't, he did, I went. My first two visits were with some nice but granola-y ladies who iced my shoulder and put a tens unit on it and taught me to stretch my neck. They thought I had "impingement syndrome."  Their icing did nothing, and the pain increased to "I'd rather have cancer than this" levels, so I went to an orthopedic surgeon for a real diagnosis.  He, after putting me in his infernal machines,  diagnosed me as having a level one SLAP tear.  He proposed a month of physical therapy and if it didn't improve - surgery.

But, it didn't sound right to me.

Everything I read online about this SLAP tear said that there is only mild to moderate pain, and mostly upon moving.  People seem to go about their lives pretty well with it, and a level one SLAP tear doesn't even need to be treated most of the time, it can just be a sign of aging.  Athletes talk about throwing balls through the pain.  Often, people don't even know they have it.

Well, I can't throw any balls.  I can't move my arm.  And, the pain is incredibly intense. I am not kidding or exaggerating, it's really, really bad.  My arm hurts all the way down to the wrist and into my back, and any motion causes a cramp-like spasm all through it.  Sometimes I just have to stop and wait for the pain to go through me.   There is no position that is comfortable and it never goes away.

But, I have to believe the doctor, right?  He's the guy who went to school for ten years, not me.   I began to think cancer had turned me into a hypochondriac; had changed me into somebody who thinks mild things are now major.

Anyway, armed with a diagnosis, I vowed to do physical therapy diligently, and take the pressure off this shoulder and the tear so I wouldn't need surgery.  I'll show them who's a wimp.  If they want me to exercise, then by God, I'll exercise.  (That's how bad I  want this terrible pain to go away.)

I went to the new physical therapist located in downtown Sacramento - a male this time.  This seemed like a much more professional set-up than the last place, and I could see all kinds of exercise equipment and people working out and all the stuff I've hated all my life.  Not a margarita anywhere, nor a book or couch.  I began to long for my granola ladies and taking a nap with a tens unit on.

Mike examined me - put me through some painful range of motion tests, and then he gave me his opinion, which was very different than the doctor's. He warned me he doesn't diagnose, but he does see people every single day with what I have:

Adhesive Capsulitis, commonly known as a Frozen Shoulder.

It fits perfectly.  The gradual onset of symptoms, the severe pain, the inability to sleep, the loss of mobility - it all makes absolute sense, and is exactly what I have experienced.  The SLAP tear isn't causing my problem, it's the frozen shoulder.

And, it's been known to happen to women after mastectomy, and it seems to have an autoimmune component to it - your body starts attacking your joint.

I was very relieved when he told me.  Nobody can understand why I feel that way, because it takes two years to recover from this, and I will be disabled for those years. For me, it's a huge relief knowing what it is.  I never believed the SLAP diagnosis.

We do know our own bodies, even when they go wrong.

Adhesive Capsulities has three phases.  The first phase is characterized by severe pain and increasing stiffness of the arm.  That lasts four to nine months.  According to my physical therapist, nothing should be done for you in this phase - do nothing to cause yourself  pain, because that can increase the inflammation process.  In the second phase, the pain begins to lessen,  but so much scar tissue and inflammation has built up the shoulder joint is completely stiff.   This also lasts from four to nine months.  The final phase is the unfreezing process, which also takes the same amount of time  Pain is milder and you gradually get your range of motion back and most people recover 90% of their ROM.

People will recover even without doing physical therapy.  But, once you are in the latter phases, you can return to normal life quicker if you do PT, so he told me to come back in a month for measurements and then in a few months for therapy.  He suggested I buy a pulley system and .use that in the hopes of keeping what ROM I have now, but admonished me not to hurt myself.  He also said to roll a basketball around on a table for ten minutes a day.

I love this:  He said take lots of hot baths and read a lot.  That is my kind of physical therapy.

It has been 3 1/2 months since my surgery and it's still extremely painful, so I am still in Phase I.   I am nearly unable to move my right arm.  I can't move it behind me at all:  I couldn't scratch my butt if you pointed a gun at my head.  Putting my hands on my hips to do the mother/wife stare-down?  Impossible.   I can only raise it sideways to the level of my hip if my arm is straight out.  I can raise it in front of me almost to shoulder height, but not above my head.  It isn't pain that prevents those movements - my arm just won't do them - the shoulder is stiff and tight.

But, I am in serious pain still and sleeping is next to impossible.  Worse, I can't throw the covers off me if I get a hot flash; my arm doesn't  have the kind of super-human strength it takes to toss a blanket.

The frozen shoulder is keeping me hot.  Miserable and hot.

As it is, I can't blow dry or flat iron my hair and can only wash it with the left arm.  I'm getting close to the one year anniversary since my last chemo and I want to style my hair!    I can't tuck in a shirt.  I can't snap a bra.  I can't shave my back.  Wait, I mean I can't scratch the back of my head.  I can't button my jeans, which is a problem, as you can imagine.   I can't carry a bag or a purse or anything with my right arm. I can't wear a pull-over, everything has to be button-up, so I can ease it over my useless arm.  I can't drive long distances as I can only turn the wheel with one arm. I can't hail a taxi, which will be a big problem if I ever go to New York.  I can't wave bye-bye to the Sacramento Kings.

Here is the worst:  I have to take my husband shopping with me.  I know you ladies are nodding in solidarity at the horror of that thought.  I've lost some of my independence and now I get to hear comments about how much things cost.

Most alarmingly, it is getting harder and harder to type or use the mouse.  I've a USB extension cord for work and have moved my mouse to the edge of my desk so I don't have to reach, but even that is getting difficult.  Pretty soon, I'm going to have to put it on my lap.

I am right-handed and it's my right side, but I'm already adjusting.  I'm getting good at reaching out with my left arm to take something or open a door.  Before you know it, I'll be ambidextrous.

So, there is my post-mastectomy story.  Like with chemo, at least I know that it will some day be over, and I'm okay with that.  As long as my doctor keeps prescribing pain medication, that is.

I have been handed dozens of little brochures during the course of my cancer, and none of them mentioned adhesive capsulitis.    It is not preventable so it wouldn't have mattered, but I had an x-ray, an MRI and an MRI arthrogram for nothing.

Before, I thought the term "frozen shoulder" was just a catch-all phrase encompassing any shoulder problem or stiffness - I didn't realize it was a real disease on its own.

Well, I do now.

I am going to document the process through pictures, so I'll take some illustrating how much my arm moves and then I'll post them here like I did with my hair.    Because this does seem to happen to women after mastectomy, it's part of the cancer experience so you all are just going to have to put up with my whining until it heals.

Sorry about that.

A Nice Story

Back when I was first diagnosed with breast cancer, some of the other school secretaries pitched in and bought me a large, creamy white orchid, which was delivered to my home with a card signed by them all.

This was impressive because school secretaries don't actually work together - there is only one per school, and we see each other once a year at district meetings, if that. We do email each other occasionally - where do you buy this, how did you solve that?  We are in an exclusive club, but all alone in the clubhouse. So, somebody really went out of their way to do this, which was very thoughtful.
 
It was also crazy how fast word about my cancer traveled through the district.  Stories like mine jump from school to school faster than Charlie Sheen can appear on a new radio show.  I'd just been diagnosed when the plant arrived at my doorstep.

Anyway, my lovely orchid earned a spot in the center of my coffee table.  The blooms lasted through my mastectomy and recovery, and I got many hours of enjoyment out of them.

Now one thing you need to know about me is I'm a plant killer.  My thumb is so black that light disappears around it.  So, when the blooms fell off and died, I figured that was it for the plant.  It still had some green on it so it wasn't ready for the garbage yet, but I knew it wouldn't be long. I moved it into the kitchen and forgot about it. I went back to work, finished my chemo, continued on with my year's worth of infusions.

December 2nd was my last day of herceptin, and I felt great relief, as you can imagine.  I went home, loaded some dishes in the dishwasher and looked up.

I saw buds on my orchid. One almost bursting open.

Not only had I not killed it, but it seemed to be thriving.

As I reached out to touch a fresh petal, I realized that I was given the plant immediately after diagnosis and it bloomed again on my very last day of treatment. It was a nice symbol: the orchid was beginning fresh, and so was I.

Sometimes, life throws some neat coincidences your way. All you have to do is pay attention.






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The Danger Zone

So, you've cut off your breast(s) and poisoned and radiated your body.  You've hit all your medical milestones - surgery, chemo, herceptin.  You've recovered and the  hair on your legs has grown back to plague you, and you have gotten back to a normal life.  Work, jobs, family.

Shaving.

Yet you are changed.  You didn't expect this, but each time you get dressed or undressed, you can't help but notice your mastectomy scar is smiling at you.   Each time you unscrew a jar, you feel your muscles jump in weird ways and you are reminded that you are different.  You know now that you can never forget; cancer can't be swept under the rug with the detritus of your other medical memories, like cramps or a post-childbirth hemorrhoid.

Cancer is always in your mind, if not in your body.  Not to the level it was when you were first diagnosed, or when undergoing treatment.  But, it is a part of you now, a part of who you are.  Why is that?  What is it about this disease that is so different than others, that it becomes a  part of your identity?  Is it only the physical changes, or something else?

I had migraines for 25 years.  Bad ones, that left me quaking in agony in a darkened room,  moving only  to vomit.  Those migraines changed  my life more than cancer did - were more debilitating. I had them several times a week.  I couldn't leave the house, go on vacation, go on a date, raise my child, without making sure I had enough meds to make it through.    Yet, I don't consider them a part of my identity.

Not so with cancer.

I have migraines, I am a cancer patient.

I suppose the treatment can help explain it - it can be quite intensive.  It's hard and so you have all these milestones that you check off - it's an all-encompassing part of your life for well over a year.  The only thing that compares in time consumed is being the mother of a small, colicky infant, and even that ends in six months.

That treatment can be intensive doesn't explain why people with small stage I cancers whose entire course of treatment is mere weeks feels exactly the same about it as a Stage III woman does.

I suppose the place cancer has in our culture plays a role.  We have months dedicated to the disease, constant fundraisers, commercials all day long about cancer centers, preventative methods - it's pervasive.  "The Cure for Cancer" has been a medical goal for researchers for decades and movies are regularly made about a brave cancer patient "battling" her disease.  Cancer has a place in our collective experience that other diseases don't, and we are the anointed ones.  All of those never-ending commercials and fund-raisers - it's about us.

Also,  we can't keep it a secret, like those with high blood pressure can.   We don't get to face our disease in private:  we lose our hair and are thus outed as cancer patients.  If we leave the house, we tell the world.

It's also true that the fact that the disease can come back and strike at any time is part of the reason it never fully leaves your psyche.  There is still no good way of telling who will face it again and who will be cured, and I would have paid $1,000 if they had that circulating tumor cell test available when I was first diagnosed.  But, they didn't, and as they say, you only know if you are cured from invasive breast cancer when you die of something else.

So, you end up in a peculiar no-man's land for a while.  You have to accept the fact that you may face this disease again, while at the same time, living your life as if you won't.

You probably won't. The odds are good.

But, you might.

And so, to know the unknowable, we cling to numbers most of us can't even understand.  The lore is: in five years, your risk for recurrence drops dramatically.  For us HER2+ gals, we recur in three years because our cancers are so aggressive.  After the third year is up, our chances go down to the same as anybody else.  After five years, we rarely face a recurrence.  (Except for the exceptions - I know a woman who faced a recurrence 22 years after initial diagnosis, and isn't that a slap in the face?) Confusing the matter - herceptin hasn't been around for a long time so nobody really knows if we will start to recur down the road or not,  or what exactly,  it does long-term for early stagers.

But, since it's all we have, we go by the three year stat - why not?

From when do they start counting?  Each oncologist  seems to have a different start time.  Some say the clock starts ticking on the day of diagnosis.  Others, from the day of your mastectomy.  Or, it starts from the day of your last chemo.  It starts from the day of your last herceptin.   I suppose that it all depends on what study they are going by.

I forgot to ask mine what he thought, damn chemo brain.  It makes sense that it would start from last treatment date but things in the medical world involving statistics rarely make sense to us mathematically-challenged commoners.

So, here I am on the Three Year Danger Zone continuum.

Diagnosis August 2009: Enter safe zone August 2012.  Only 18 more months!

Mastectomy October 2009:  Enter safe zone October 2012.  Only 20 more months!

Ended Chemo March 31, 2010:  Enter safe zone March 31, 2113.   2 years, 1 month.

Ended Herceptin December 2, 2010.  Enter safe zone December 2nd, 2013.  Still 2 years, 9 months to worry go.

Clearly, I'm rooting for the definitive answer to be from the date of diagnosis.  In 18 months, will I be able to take a big sigh of relief and call myself a Survivor?

I think I'll have cake on each one of these dates, just in case.

Mmm....cake.

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EMR - A Patient's Point of View

I like to read the doctor blogs.  It's interesting getting perspective from behind the white coat.  Hearing their struggles managing patients, running a business, dealing with insurance companies and of course, with illness and death has been useful to me as a patient.  Well-written blogs can give us an idea about the problems facing the people who, by virtue of our disease, have become a powerful force in our lives.

One topic that pops up regularly on the blogs is the use of Electronic Medical Records, or EMR.  Apparently, doctors are a bit behind the curve in managing patient health electronically.  It stands to reason that having patient records online, accessible to other doctors,  insurance companies and pharmacies would streamline care.  I've read notes on my charts that are absolutely incomprehensible; once I even had a nurse hand me a piece of paper written by one of my doctors and asking me what it said.   I'm pretty good at reading bad handwriting, but I had no idea, and it was about me and what was supposed to happen to me.  That can't be good for a patient.

On the other side of the coin, different software companies make different solutions, and they don't all interface and talk to each other, so the dream of every one of your doctors being able to see another's notes is just that - a dream.   There are privacy concerns when anything is done electronically, and of course, there are the typical user issues that happen anytime a new system is implemented.  There is fear that the insurance companies will misuse the information and create more work for doctors' offices, or use something said in a note to deny a reimbursement.  And, speaking as a former IT person - people just plain hate new software and often resist.

My oncologist's office implemented a new EMR system when I was in the middle of chemo  In fact, they did training on the system during one of my long infusion days, right in front of my barcalounger,  so I got to see the entire thing in action.  Once the nurses learned the system, once they stopped cursing,  I saw no difference in the care I got from them.

Not quite so with the doctor.  My experience with him changed dramatically.

Before EMR:  I would go to a exam room and sit on the chair, flip through a magazine or play Angry Birds on my iPhone and wait.  Dr. would walk in, make eye-contact, and ask me how I was doing, or  more likely, tell me how I looked to him.  Then he'd sit down and face me, my chart on his lap.   I would put away my phone and describe any concerns I had while I admired the oddball tie he was wearing that day, and he would answer while actually looking at me, occasionally glancing down to jot notes. There was a human connection there, at least as much as you will get with a professional physician whose specialty is people dying of cancer. We had a conversation.  He'd ask a question and my response would bring up another question - or I'd remember a concern and go from there.  We looked at each other.   He was in control, but there was give and take. I'd leave the office feeling like my concerns had been addressed and my needs as a patient met.

After EMR:  I go into the exam room and sit on a chair, play Angry Birds on my iPhone and wait.  He walks in, makes eye-contact, ask me how I'm doing, and then turns to sit in front of the computer - with his back to me. My doctor, with his penchant for humorous ties, could be wearing a dead pig around his neck for all I know.    I hear the mouse "click click click click" then he asks a question.  I answer and then "click click click.... type type type type."  Is he writing down what I said, I wonder?  What is all that typing about when I just said I am taking my medicine regularly?  Since I don't want to interrupt his train of thought while he is typing and clicking through various screens, I go back to playing Angry Birds.  When  he's done with what he's doing, he asks another question.  I answer, and the whole thing repeats.  Because each question/answer/type session takes so long,  I continue to play my game while he works.  This goes on for some minutes, and any human interaction or spontaneity  is gone. It's a very stilted experience.  I'm playing a game and he's deep in his computer.

Kind of like my family after dinner.

Because I saw him before EMR was implemented, because at that time I learned he's caring and competent and responsive to his patients, I don't feel slighted or that he's displaying a lack of interest. I don't think he particularly likes this system, in fact.  I feel comfortable enough so that if I did have a great concern, I would express it even with his back turned.  However, had this been my first exposure to him - had his back been turned to me during the early days of my cancer diagnosis, when I was facing the unknown and a bit scared, I might very well have turned my back as well -  right out the door to another physician.

I understand the need for documentation, and am a big fan of technology.  I was rooting for Watson, not Jennings.  I also understand that many exam rooms are not set up so that a doctor can face a computer and a patient at the same time, which is the case with my doctor.    I am guessing that many doctors are not experts at typing and it takes a while to input their notes, time which leaves a patient twiddling their fingers, which is also the case with my doctor.  As a former IT professional, I can't imagine this particular system is well-designed, considering that it takes a dozen clicks to get anywhere but I have not (yet) snooped.

However, these are things that need to be worked out before fully implementing an EMR system, at least for any doctor who cares about making a human connection with a patient.  There are tablets, iPads, laptops.  There has to be a way to return to a bedside manner method of doctoring while still entering the digital age.

So much of being a good doctor, from a patient's perspective, is not only medical knowledge, which (rightly or wrongly) we typically take for granted, but also the ability to relate to us, to look at us and see if our truths are being expressed.  Trust is essential - after all, the physician is about to cut us open, amputate a body part, radiate us, poison us with chemicals, tell us if we are going to live or die.  We need to know that this doctor is a person who will treat us with dignity, who will do the best professional job for us he is capable of.  We need to know he takes our concerns and fears seriously. We want him to want us to live.

It's very hard to gain that kind of information and learn to trust somebody with our well-being and our lives when all we see and hear is the back of a white coat and  the click of a mouse.

EMR may be the future of medical management, but it hopefully won't come at the expense of a true doctor/patient relationship, which we patients really do need.  While I admit I was rooting for Watson to win Jeopardy, the truth of the matter is, I'd much rather have Ken Jennings as my doctor.

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Parenting with Cancer

When I was diagnosed with cancer, my children were 12 and 22, respectively.

I know, I know, what can I say?  My oldest put me through a 48 hour labor, it took me a while to want to try again.

Anyway, at the time of my diagnosis, my oldest was out of the house and on his own (yes, young moms, they do leave and yes, it's hard - dealing with that could be a blog on its own, and honey, if you are reading this, you can come back any time). 

My youngest was in middle school and at that point, they are very peer-centered. Telling them I had cancer was easy. Both were old enough to understand, and not only that, both knew enough so that the world "cancer" didn't automatically bring up the idea of death. I told them I'd have to do chemo, asked my oldest for help with his brother (picking him up after school) and told my youngest I'd be tired and bald but would live through it. They both took it in stride and did a great job of making life easy on me, as of course, did my husband. My oldest did pick up his brother every day during the times when I couldn't drive or had a doctor's appointment - my youngest son continued to get straight As in a rigorous International Baccalaureate program and participated in many after-school competitions and events - my illness didn't phase him, as I had intended.

Sometimes, I'm not sure he even noticed. 

Which made me happy, by the way.   I did not want to burden them with my illness and I made it very clear that this was a small bump in the road and nothing to worry about. I believe that kids, even older ones, take the lead from the parents reaction. Staying calm was key. I always believed I'd be a "survivor" (gag) and lived that way through treatment.

In being a part of the cancer community, I of course have met mothers of children much younger than mine.  I have always felt bad for them - it's one thing to tell a very bright, independent 12 year old that mom has cancer and quite another to tell a needy 3 or 5 year old.  In all cases though, it's necessary to model a good outlook for  the children's sake, and I wondered how the parents of younger children manage?

I came across a book for parents of young children, and thought it was a great idea. I asked for a copy and the author, Sue Glader, generously sent me one. The book is called "Nowhere Hair" and is about a little girl searching for her mother's hair. She then asks outright where it went.  Mom explains she lost it because of medicine for cancer but is reassured that she is still loved - which is really what every child wants to know.  This book is fantastic for explaining cancer in a way that a young child can understand and relate to, and also shows the reality (baldness, tiredness) along with the truth, love and acceptance.   The illustrations are charming, the story is captivating and, I believe, it is the perfect book to explain what is about to happen to a younger child.  Grandmothers will also be able to use this to explain to their grandchildren why they are sick.

This book fullfills a need that, to my knowledge, has been unmet in Cancer World so I'm hoping that Sue will do well.  Hospitals and oncologist's offices should buy this book and keep copies in their waiting rooms.

Nowhere Hair can be purchased at Amazon, or you can win a copy from me!  Leave a comment detailing your fears about telling your children, or your experience doing so, and I will choose one by Friday, February 25th.