Platitudes

Platypus, borrowed from http://mudfooted.com/platypus-mammal-eggs-bill/

Today, I got an IM from another stage IV survivor.  She was having a hard day...and was tired of hearing people tell her "you'll be OK."

Another friend of mine who has advanced ovarian cancer also has commented on this...how it makes her crazy because people DON'T know that you will be OK...in all likelihood, those of us in this boat probably won't be OK.  At the very least we will suffer financial set backs, worry, and tons of drugs, hospital visits and procedures.

For many of the people who offer such platitudes, most of the time what they are really saying is what they want for you.  This is an affirmation...which is somewhat mystical thinking...the more that we say "you will be OK" then maybe that person will be OK.  Sometimes, I have run into people who do have that mystical understanding...in fact I have felt it on occasion when speaking with someone who is undergoing a health issue...I sometimes get the feeling that they will most certainly be OK....but this is entirely unscientific and without foundation...and quite frankly, I am usually afraid to speak of it.

With my cousin, when I see her, she will say "You will be OK."  For her, she is saying it to calm herself down as she had breast cancer and finished treatment I think in 2004....so for her, she is absolutely terrified. Our friends and loved ones have difficulty knowing that they could indeed lose us....and so they keep on saying "you'll be OK."

Sometimes, this isn't enough.  We as cancer patients NEED people to understand and commiserate with us, even if briefly.  Sometimes we need someone to acknowledge our mortality and grieve with us before we go on into battle.  I got mad at my husband, because he couldn't do this....it was just too scary for him.

It is a tight rope.  You want to be positive for the person....but sometimes, saying "you'll be OK" falls flat.  So...perhaps the better thing to say would be "I want you to be well.  I hope and pray that you will be OK.  And I really wish you weren't going through this.  If you shouldn't be OK, I will miss you.  I will remember you...and for now, I just love you."

Attention Manufacturer of Mammography Machines!

Tuesday I had my yearly mammogram.  I don't really mind them...except for one little thing....something which seems to me like it could be easily fixed.  It is a design flaw.

No, I'm not talking about the squishing of the breast between the platen and the plate. Is is pleasant? No, but I understand why it must be done and I can handle it.  Like most breast cancer survivors, I tell them to squish my breast as hard as they can, and usually the tech's eyes get very large when I don't even whimper at the amount of pressure they administer.

What hurts more than this...and which is annoying because I think it can be easily fixed, is that the second view is taken at an angle.  The machine is rotate and you are supposed to hang onto the handle (which I sort of drew a maroon line to on the top)....the bottom maroon line points to the edge of the platen.  See the shape?  This pokey corner gets shoved into your armpit.  Tightly.  Painfully.   And the thing which bugs me the most is that if this edge could be rounded, it would hurt a whole heck of a lot less.  It doesn't come into play with the dead-on view...but man oh man does it hurt when that corner digs into the tender spot under your arm....all the while your breast is getting squished...but this armpit thingy hurts me more than the squishing....and it hurts my brain to think that this might probably be easily solved...if only the designers had to have a mammogram done on themselves with what they design....

So wake up you makers of mammogram machines! Please develop something that is less of a torture device...especially if part of the torture comes from something which isn't an integral part of the test.

Choosing Chemo isn't like picking out a new pair of shoes

I am often dumbfounded over the change I have seen in medical practice these days...or maybe it is partly the difference I see between oncology practices here and in Connecticut.   It seems to me that here at least the patient is put in the drivers seat.....sometimes it is an uncomfortable place to be.  Here we are, relatively inexperienced, or even if we are experienced, we barely have the beginning of knowing what to do other than to apply brakes and use the turn indicators.  Maybe.

You see earlier this year I went in to the oncologists.  My liver biopsy had proven negative (there was some uptake which wasn't cancer) and my tumor markers were stable and the bone metastases didn't show any progression on the P.E.T. scan.   We reviewed where we were.  My oncologist then asked me "Do you want to stay on this or do you want to try something else?"

Huh?

I'm not a doctor.  We are not picking out a pair of shoes based on looks and maybe purpose and comfort.   Heck, I'd feel better if I had even those earmarks for choosing chemos.  But I don't.  In fact, since it is "only in my bone" we don't have anything to even test to see if it has changed HER2Neu or hormone receptor activity.  So...why in the heck am I being asked what I want to do?

Well...if I had my choice, I would ask for a huge pair of scissors like these to just snip that old cancer out and kill it with some really big guns.  But I don't have much of a choice....

So...I feel like I am Mr. Toad in the driver's seat preparing for another wild ride.

What did I say? Why should we change if I am stable and there isn't any progression?  Unless, of course, you know something I don't or you have something which will give me fewer side effects and be more effective.

But there isn't.  So I continue trudging through Xeloda.

Amusement at Form Letters

     Friday I received a form letter from the hospital which has been doing my mammograms since we moved to Troy.  I was sort of amused by it.  First, it was Dated Dec. 27, and it came in Jan. 11th's mail.  "Our records indicate that based on your screening mammogram performed on 1/116/2012, it is time to schedule a routine screening mammogram of both breasts."  Really? I wonder how they are going to find the missing one?  I am also amused by the "routine screening mammogram."  For breast cancer survivors, no mammogram is routine.    I also am somewhat annoyed by the fact that even though I have had breast cancer and am now at stage IV, the only thing that the insurance covers is "a routine screening exam."  In other words, a rather cursory look....a diagnostic mammo, they go over in more detail.

On the other hand, the letter goes on to say this:  "Be aware that many breast cancers do not produce symptoms.  Early detection requires a combination of monthly breast self-examination, yearly physical breast examinations, and periodic mammography according to your age and physician's recommendations.  Current American Cancer Society Guidelines recommend screening mammograms and clinical breast exams every year beginning at age 40."

So, some of this I like....especially the self-breast examinations.  Why? Well, because at one of the last times I took my daughter for her yearly physicals, the doctor said NOT to do self breast exams because "you often find false negatives."  Excuse my language, but WTF? I would rather have something checked out and find it was a false alarm than to have anyone go through the hell I did because I didn't know that at age 33 I was at risk of breast cancer....and my tumor was quite large and easily felt by the time I realized I wasn't imagining things.

Yes, I realize that it can cause concern.  Yes, I realize that following up can cost money.  But, I think that this hospital is to be lauded because it does point out that self-exams are still important.

I also think of my niece's experience. She is 30 and recently went in to have a breast MRI.  She had to fight for it, even though her mother was diagnosed with breast cancer at 45 and I was diagnosed at 34.  Why a breast  MRI? Because she is young, she has dense breasts and dense breasts make it difficult to see problems.  Her PCP bucked it. Her insurance bucked it....the oncologist she went to applauded her because she was doing exactly what she needed to to protect her health.

I am beginning to believe that the patient is often being left behind as the almighty dollar is what we are really protecting...or rather, the almighty insurance companies.  Remember, very few hospitals are charity hospitals anymore...most are for profit entities.  Insurance companies are not there to help us, they are there to make money.   I realize that this is very harsh and there are a lot of hard working men and women in the health provision field who do care about their patients and work hard to try to make sure that we live as long and as well as possible...but we would be ostriches to not look at the whole picture.

So...even if I can't seem  to find my left breast so that they can do a mammogram of it.....or maybe....maybe they want to try a mamm of my prosthesis...I still think that this reminder and the letter is a good thing...

Sometimes Breast Cancer Seems to be Trivialized

  I have spent the better part of today cleaning off my desk....which I assure you  is a major task.  I've been finding receipts from 2011....so that goes to show you how long it has been since I have done a thorough shakedown.

In the pile was a flyer from the American Breast Care company which makes the current breast form I wear.  It was advertising their "Face of Inspiration" contest which closed Dec. 31, 2011..  You were to tell them about your favorite quote and how it inspired you through your breast cancer journey.  Six women were chosen, and from those six, "one lucky woman would be chosen to be the face of inspiration."  You were going to be flown to Atlanta for two days.to get a tour of the ABC home office and learn how prosthesis are made..."from start to finish."  Oh yes....and you get a photo shoot and a spa visit.

So....they were looking for a model....and they were promoting their "Inspiration Series" "This new breast form features a special imprint of an inspirational message on its back layer.  Now you can have one of our most popular breast forms, the Flowable Back Triangle, with a little something extra.  Try it today!"

Harumph.  It seems to me like this "contest" was just one way of getting a really inexpensive model...and it seemed a bit like we are being taken advantage of just a tad.....We provide them with an inspirational message, and a good storie, and MAYBE we will be picked to have a spa day and a photo shoot (which of course gives them a face for advertising).

The Inspiration series...well....heck, quite honestly, I don't look at the back of my prosthesis.  I wash it, I wear it....I don't think about it until it begins to leak or I have lost enough weight that I need to replace it.  "Try it today!"   I only "try" prosthesis if I am in the market for one....at the price they cost, we are not running out to try the latest flavor, thankyouverymuch.

I get it...they are trying to be compassionate.  They are trying to show the real face of breast cancer.....but why does this feel so wrong? As if it has been minimalized?

Being invisible and Drawing in

These are two challenges I think that many of us may struggle with...at least I know I do.  I remember when I was first diagnosed with stage IV cancer, people started pulling back.  They figured I was just going to die anyway and they didn't want to be there when I did it.  Too bad that was in 1998 and I'm still here.  Their loss.

Sometimes when you are diagnosed, you don't have the energy to put into relationships, quite frankly, you are just trying to stay alive.  Sometimes the side effects make it so you draw in.  I am a little bothered sometimes...I used to walk with my neighbor.  Now, the pain in my feet and pelvis often make it difficult to walk across the street.  So I don't....but she rarely comes over.  I'm reading this as perhaps she doesn't want to continue the relationship...but then, it may just mean that since I don't LOOK like I am on chemo (I mean, I have my hair.....at least some of it) that people forget that I am actually having trouble.  So...sometimes I am not included in things.  I could solve this by making telephone calls and forcing myself to be back in the picture...but sometimes, it just seems way too hard and the world continues without me.

I was really surprised to get a Christmas card from an old friend....I write her every year at Christmas and tell her what is going on.  Of course for the last three years, it has included my fight against the recurrence in multiple bones.  She wrote that she was diagnosed with early stage breast cancer and went through surgery and radiation, but no chemo.  She wrote on a personal note to me  "I occasionally glance at Face-Book, and it seems you're dealing with a recurrence of your cancer? I hope it has faded into oblivion."

Uh....hasn't she read any of the Christmas notes I have made over the last three years?  I have been on chemo with a few off months since November 2010.  I have made mention of it....I am not really sure what to make of this....except that perhaps advanced stage cancer makes us invisible.