Saturday, February 26, 2011

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.


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.



Tuesday, February 22, 2011

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.


Sunday, February 20, 2011

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.

Saturday, February 19, 2011


I went to see my cute young doctor for the results of the MRI Arthrogram.  I knew what he was going to say, "this is really bad, we are going to schedule surgery for tomorrow - I'm quite afraid your arm is going to fall off if we don't."

I'd already purchased a post-surgical pillow wedge pillow on Amazon, knowing I would have to sleep sitting up again, and wanting to do it better than I had the last time.

I sat in the waiting room, arm throbbing, looking at a big red sign that says they will charge you a $50.00 fee if you cancel an appointment within 24 hours.  Since I was already an hour past my appointment time, and I'd shown up early, I thought I would write my own sign that says, "Patients have the right to charge a doctor for each 15 minute increment past their appointment time."  and hang it underneath their warning. 

Except, of course, my right arm doesn't work well enough to write, and I can't reach up to hang anything.

So, in he came and I steeled myself for my surgical appointment the next morning.  Instead, he said, "You have a level one slap tear."

In case you don't know, that is the most minor kind of labrum injury you can have and it doesn't always even require surgery.

I was stunned.  I said, "Are you SURE?"  I can't believe I can be in this much pain with only something minor going on."  He said that it is likely that the constellation of the injury, the mastectomy, the reconstruction has my body mechanics out of whack, and is causing me more severe pain than others might have.  He also said the MRI was just a snapshot in time and if they could do these tests with people using their arms they might see more, but for now, that was the diagnosis.  The only way to know for sure is to look inside with a scope.

So, apparently, I'm some sort of wimp.  A level four wimp with a level one injury.

Anyway, he wants me to do a full month of physical therapy, three times a week,  to see if I can get the muscles functioning well enough to take the pressure off my shoulder and maybe ease up the pain. I'm also supposed to take anti-inflammatories round the clock.   He's scheduling surgery to look inside and clean it up at the end of March, but in the meantime, if I get relief after PT, then I can cancel the surgery.

Now I have to do the one thing I have always hated:  exercise.  Life can be so cruel.


Saturday, February 12, 2011

What my oncologist said...and MRI Arthogram

I had my first three month follow-up with my oncologist, Wednesday the 9th.  My blood looks good, no tumer cells showing up.  I explained my shoulder injury to him, and he looked incredulous.  "You have a labrum tear?" 

"Yes, that's what they think," I said.  "The Arthrogram is tomorrow."  He next comment surprised me.  He stated that they probably positioned me wrong on the operating table during my reconstructive surgery. 

I always suspected that was the case, but I didn't think doctors ratted on each other. 

He even asked me who the doctor was.

Anyway, for what he is treating me for - cancer (remember that?) I look fine.  He did a breast exam (his secretary had to come in and take my bra off, which wasn't at all embarrassing) and he didn't feel anything unusual.  He didn't do my cancer side because there is nothing there but an implant, and I can't lift my arm for him to check the axillary area.  Anyway, I'm "Dancing with Ned" which is the news all cancer patients want to hear.  (That means I am in remission.)

Which should be great news but it's hard to concentrate on that when it feels like you have to physically hold the right side of your body on with your left arm.

The next day I had my MRI arthrogram.   I'm so used to these tests that I wasn't the least bit worried about it.  I had been told by my doctor that there was a recovery period after that could be painful.  However, the actual test wasn't supposed to be painful.

They lied. 

I followed the usual routine.  Got undressed in the ever-cold room, put on a hospital jonny, put my stuff in the little locker and then was led to the flouroscope. I rested on the table and dozed until the doctor came by and injected my shoulder with contrast.  They use an x-ray machine called a flouroscope so they can see what they are doing and make sure they get the fluid in the joint space.   Once your shoulder joint is full of fluid, they take you to the MRI. 

Labrum tears are hard to diagnose, even with an MRI.  That's because the labrum is between bones.  The theory is, any place they see the contrast leaking, they assume there is a tear.

I was actually very eager to have this test because I knew they were going to numb the shoulder first.  The pain is now quite intense and I am more than ready for some lidocaine.  You know me, I'm not a complainer.  But, it's gotten worse by the day, and it seems each morning I wake up, my arm has figured out a new method of torturing me.  To get through the day, I've upped my pain meds to levels that would kill a normal person.  I'm working, but only because I have TAs (teaching assistants) that do anything involving lifting and by lifting, I mean filing, handling mail, unlocking doors, etc.  I can answer the phones, and I can type (although not comfortably) and that's about it.  Even writing hurts. 

The newest symptom is my arm goes completely numb if I put it in the wrong position.  I can't sleep on my stomach at all, my shoulder won't allow that positioning.  Honestly, it feels like it's dislocated and in fact, that's not out of the realm of probability.  The labrum is the cartilage in the shoulder that holds the humerus to the socket.  It can tear completely off and then your arm is just held on by tendons.  But, I also hear it stops hurting if that happens, so clearly,  mine is still attached.

So, anyway back to the imaging center.   I was eager for the lidocaine and a few hours of relief.  Sadly, it was not to be.  He put it in but nothing got numb.  Then he put the contrast in, which was a strange and horrible feeling.  You feel your shoulder getting fuller and fuller, like a balloon blowing up, then you feel it swell painfully down your arm.  It's quite alarming.  Not only that, but the doctor roughly moved my shoulder into a position it had not been able to be in for a month, which left me quaking with pain.   He acknowledged that sometimes when the bicep is involved there can be "some" pain.   Fortunately, it went back to normal levels quickly, and I went to the MRI machine and had my typical nap.

I drove home, one-handed, a task I'm getting quite good at.  I use my knee to help me with turns. 

I find out the extent of the damage Monday, which is Valentine's Day.

Here is a question:  it's become very obvious to everybody that this is not an injury I could have done to myself post-surgery.  Something happened to me on the operating table during surgery.

I now am looking at more time off work recovering from a surgery, months of physical therapy, co-pays, using up my vacation for illness.  I like my plastic surgeon and think he did the best job possible.  But, something happened in that operating room that caused this injury. 

What do I do?

I'm not a person who is willing to sue for an accident.  I know nobody did anything to me on purpose. On the other hand, this is going to cost me time and money (not to mention pain, and disappointment, and a house I've not been well enough to clean for like two years!) and this was not my fault. 

I have a follow-up appointment with him next week.  I don't know if I should ask him directly, or what I should do, if anything.

Sometimes, I feel like the unluckiest girl in America.

Then I remember, I actually am lucky.  I have  a great family, nice friends, a roof over my head, insurance, a job I really love, enough to eat.  This too, shall pass.

Sunday, February 6, 2011

Arthrogram Scheduled

At the risk of having to rename this blog:  "Ann's continuing complaints about her" I plan to update you with current news of my shoulder.  Like any gray-haired old lady, I like nothing more than describing my medical procedures and tests.  Pretty soon I'll think nothing of going into details about my bowel movements at a dinner party,  just you wait and see.

While my shoulder injury is not part of breast cancer per se, the fact that I have it is a direct result from breast cancer surgery, so I figure it belongs on this blog too. Hey, it could happen to you too, although I hope it doesn't.

I have an MRI Arthrogram scheduled for the 10th and a follow-up visit with the orthopedist on the 14th.  Valentine's Day because I love doctors so much.  

I've given up on the physical therapy for now.  To be honest, fighting this pain is making me tired and cranky.   I don't have the energy to go anywhere after work and am lacking in the patience to deal with  a succession of Ms. Granolas lecture me on the healing properties of ice.

Saturday, my son participated in the Science Bowl Regional Competion and I was there to root him on.  I couldn't help but remember the last time I was cheering for him - it  was his 8th grade Science Olympiad competition, which I blogged about.   I had just finished chemo and was very tired and bald, but grateful to be there watching these brilliant young kids demonstrate their interest in science, and looking forward to the following year when I'd be watching these competitions with full health.

Yesterday, I was just as proud (the A team from his school won the entire thing) and I have a lot more hair.  But disappointingly, because of some stupid shoulder injury, I'm not healthy yet.  The pain is pretty intense and I can feel the humerus coming out of the socket at times, and it also feels like bone on bone when I move it.  It also feels like the biceps and triceps muscles are disconnecting and I have lost strength in my arm.  On the plus side, the shoulder makes nice, crunchy noises when I rub it.  I am driving with my left hand only still and that is getting pretty wearing, even though I have a very short commute to work.  I can't blow dry my now abundant hair, or straighten it.  

Dealing with hot flashes is even a problem - I can't easily take a sweater off or on.  My office has no heat so it's freezing in the morning and I rely on  a space heater.  Yet a hot flash makes me instantly feel like I've been plunged into boiling water - so I wear tanks with sweaters and rip off the sweater as necessary.  That ripping off is a motion my arm no longer makes.  Even putting on a bra is impossible.  At first, I could still do it because my left arm is flexible and reaches all the way around to my right side.  All I had to do was hold it to the side, no problem.  Now, I can't move my arm even to my side, it's only position is to the front of my stomach.   I have to pull my bra on over my hips.  (Fortunately, I have no hips so that's not too hard.)

I am looking forward to this arthrogram for one reason - they are going to numb my shoulder.  The procedure is to inject some contrast into the space of the joint and then MRI it to see if any of the contrast leaks into places it shouldn't.  The injection hurts, so they numb you up.

I am very eager to be numbed in that area right now.

There is a recovery period for this test.  It is supposed to leave your shoulder with even more pain than you had before.  I can't imagine.

I'll let you know.

Here is my whine:  After enduring a breast amputation and reconstruction, six rounds of chemo and a year of herceptin - totalling 16 months of constant treatment - all that time I have cheerfully been looking forward to getting back to normal.  And, I'm feeling quite sorry for myself that I am probably looking at another surgery, another recovery period, more time off of work and more disability without even ONE DAY of normality.

Over something completely dumb, like a SLAP tear of the shoulder.

I would definitely like some cheese with that whine.

Actually, make that just wine.  I'll risk the headache.