Have Yourself a Merry Little.........

Christmas, holiday, hanukkah, whatever you celebrate, it's all good. Isn't it?

I guess that depends on many things, who you are with, what you are doing, what your memories of Christmas are, what you'd like them to be like in the future.  Is it always the perfect time of year?  Does it always hold the best of memories?  I'm asking myself that question.  And that question is almost impossible to answer. Growing up, there were good Christmas memories, and yes, there were bad Christmas memories.  I had no control over what my Christmases were like when I was a child.  For very private reasons, many of them were filled with both anxiety and excitement.  A hard combination for a small child to understand.  We have no control over our experiences as a child, nor our memories of those experiences.

Then, we grow up, to create memories of a family of our own making, wanting to make those memories good for our child, or children.  Except there were always other family members to consider, and sometimes, over-the-top personalities could cloud even the best laid plans.  So, how did I do as a parent?  I guess that would be up to my child to answer.  This is what I know, however.  I did the best I could, with what I had, to make them special.  What other family members may or may not have done, I still had no control over that.  Was there disappointment? Yes.  Was there joy?  Yes.  And so it goes.  We all just do the best we can, and hope that more times than not, it's good.

So, I come to the present, and what it's like celebrating Christmas when you are living with cancer.  It's not something you push aside for one month of the year.  It doesn't allow that.  There are still blood tests, there are still chemo treatments. There are still cancer marker numbers, that will thumb their nose at Christmas and rise anyway.  So in competition with what to get so-and-so for Christmas, is "what treatment should we try next?" More decisions to be made, more stress to deal with. The energy leaves, even though you want it to stay. One minute it's there, the next minute it's just gone.  The thoughts that are on your mind don't take the month off for fun and merriment if you are still in treatment during this 'special' time of year.

Please understand, this is not about taking a break and throwing a self-imposed pity party.  Rather, it's about explaining and understanding how the most wonderful time of the year isn't always so wonderful for the thousands of people on this earth who struggle with terminal illness.  We still deck the halls as best as we can.  We put a smile on, plan activities, and go with the best Christmas spirit we can muster. Because it does matter, and it is that important.

But sometimes, when we are alone we cry.  And when we cry, it's not because we are not strong.  It's because we have had to be strong for so long.

Not wanting to end on a poignant note, I reveal one thing does not and will not ever change, one thing that always remains true for me.  Christmas is about the smallest gift ever given to man and as someone once said, it didn't come with a bow.  The smallest gift that grew into a man who wanted to leave one gift for mankind, and one gift only:  to teach us how to live. When I remember that, I don't have to force a smile, or a feeling of peace inside.  It just comes.

So I sincerely wish you all a Merry Christmas...all those I love and hold dear, as well as those who walk this road with me.  I promise to remember and celebrate the things and people in my life that are still good and dear to me, whether near or far way.  Whether healthy, or struggling. And to remember the teachings of that one tiny gift, many years ago.  I hope you will do the same.  That is my Christmas wish for you.

Fight, Battle, Warrior?

If you read any writings, blogs, facebook posts, on living with cancer, you will find that it is often referred to as a Fight, a Battle, and that those participating in this fight referred to as warriors.

Let me just say how abhorrent this is. Cancer is not a fight, and cancer patients are not warriors.  Cancer is a disease, and just like any other disease it invades the bodies of people who were once healthy and whole, vibrant, and going about the daily business of life.

Instead, consider cancer as an unwelcome visitor, who comes and doesn't know when to leave. It is rude, selfish, and hasn't the manners to realize it has overstayed it's welcome. If you are "lucky" enough to be diagnosed at an early stage, you may also be lucky enough to reach a point in your life where this unwelcome visitor no longer appears.  It took the hint, removed itself and closed the door as it left.  If, however, you aren't that lucky, and are diagnosed at late stage, it most likely doesn't take the hint. It remains, roaming through your body like the unwelcome visitor that roams uninvited from room to room, looking in closets, opening and closing drawers, and in general, intruding itself into places where it has no business.  And often, it finds a comfortable place, and in it's comfort, feels free to invite its friends to join him.  And they happily accept the invitation.

To say it's a fight, and we are it's warriors is incorrect and inappropriate.  If we as patients lose, you may hear "oh, so sorry she/he lost the fight."  What?  No!  The patient didn't lose the fight.  She/he was an unwilling participant in a war that was not asked for. She/he didn't die because of a lack of fighting hard enough, nor from not being brave enough.  She/he died because of a disease that stole the patient's life.

Cancer brings enough negatives into a person's life all on it's own.  Please don't belittle that person by saying they "lost the fight."  That person may have spent years assualted by this disease. They have done all that medical science currently knows in dealing with this visitor, and unfortunately, when you are the patient it quickly becomes clear to you that what they know isn't really that much at all.

And finally, let's please all remember than not all cancers are pink.  In fact, today 85% of pink cancer patients live to their full allotted time on this earth.  Let's remember the color purple, which covers all cancers, because there are many that are deadly.  Don't they all deserve the same attention?

You want ME to decide?

What happens when the chemo regime you're on isn't working?  Several things can happen.  You may decide you've had enough, and it's time for hospice.  Or, your doctor may say we've done all we can do. Or, your doctor can suggest several other chemo options for you.  I am always in a state of jaw-dropping confusion when my doctor, after explaining my other treatment options (and there are always several) says, "what would you like to do?"  One of my responses when I recently recurred was, "I'd like to get off this table, go out the door, and pretend this isn't happening!"  After a chuckle from both of us my doctor patiently explained the potential side effects of each option, and the percentages of it's efficacy.

This conversation always causes a pause and a minute of quiet reflection on my part.  I have absolutely no idea what I would like to do.  I have no memory of actually earning a Doctor of Oncology degree in this lifetime.  I feel, and actually I am, completely unqualified to make this decision.  So my answer to her is "if it were you, what would you do?"  I'm terrified of making that decision purely on my own.  What if what I chose on my own and that treatment doesn't work?  This is one time when I surely don't want to be sitting in the driver's seat.

I came across an article written by Dr. Craig Hildreth, who explains what this situation is like for the M.D.  He hit the nail right on the head in this paragraph:

But, soft! What about the gentle art of medicine? Any joker with a reasonable command of the language can recite the side effects or statistics. There is more to it than this. Oncologists, like ancient trees, are layered with rings of experience. It is our duty to use this wisdom to help our patients make a pragmatic decision about taking treatment, one that they feel comfortable with, if not optimistic about. Our duty to our patients requires that we go beyond regurgitating the pros and cons of a treatment and interpret the nuances of a patient’s psyche and the dynamics of their family. Despite the growth of shared decision-making, I believe that patients simply do not know enough about the blessings and perils of modern cancer care to make the right choice based on data alone. They need sage advice from one who has seen this situation countless times before. Our patients deserve to have their oncologists collect all the pieces of the case: the goals, risks, logistics, psychological factors, caregivers, costs, and then, combined with and blessed by the ineffable magic of human interplay, guide them toward a decision that no matter what happens is never remembered with regret.

http://www.cancernetwork.com/blog/cheerful-oncologist/content/article/10165/2154307

Thank you, Dr. Hildreth.

Public Speaking

Gulp.  Not exactly my forte, but I have been asked to present my story of diagnosis, and how it came about, signals that were missed, etc.  The University of Arizona Cancer Center is sponsoring a symposium entitled "Survivors Teaching Students."  We (3 to 4 of us) will read our diagnosis, in an effort to raise awareness among 3rd year medical students.  This is my speech.  Wish me well!

Good morning.  My name is Cathleen Pearl, and I have been given 7 minutes to tell my story in which I will hopefully be able to help you help your patients.  That's not a very long time at all, but in comparison, two years ago at the age of 63 years, in less than one minute, I went from planning my retirement to wondering if I would live long enough to see my retirement.

I began my journey with a visit to my Primary Care Physician, complaining of severe stomach cramping, which I was experiencing every morning.  At the same time, I was intermittently constipated and experiencing acid reflux.  But by the time I saw him, those symptoms had subsided.  Several weeks later, they came back. I revisited my pcp. It’s important to note that at this time, I did not exhibit bloating, nor pain with intercourse, which are generally the more common symptoms of ovarian cancer.  He referred me to a gastroenterologist , who ordered a colonoscopy and an endoscopy.  Those came back clear.  He prescribed meds for the acid reflux.  I was supposed to see him in two weeks for follow up however, I didn’t know that and it didn’t get scheduled.  A month later, as it wasn’t resolving, and my stomach was starting to bloat, I wasn’t able to eat much, and was experiencing extreme night sweats, I saw him again.  Today I realize I had many symptoms of ovarian cancer!  However, his plan of care was to prescribe a different prescription.  I  gave it two weeks, and found no relief.  He prescribed yet another med.  I again showed him my bloated stomach, which by this point looked like I was eight months pregnant.  He did not seem concerned with that and did not palpate the area.  All of the above occurred between December 2010 and the end of April of 2011. 

All of this quickly changed course when I went to the ER one night with terrible back flank pain.  I knew I was having trouble passing a kidney stone.   In came a doctor, whom I have never met, and never consulted with.   As I told him about the pain I was experiencing, I was being hooked up to an IV pain med, but he zeroed in on my stomach and said,” we need to see what’s going on with this”.  He drained 4 quarts of fluid from my stomach and sent it to pathology.  I was also scheduled for, and had, other tests. 

At 10:30 that evening, as I sat alone in my room, another doctor came in, and in about 30 seconds told me I had ovarian cancer, probably stage 4.  I asked him, well, what we do about it?  He said, "I’ll be referring you to a gynecologic-oncologist, but the prognosis isn’t good”  then turned and promptly left the room.  And my world turned upside down! I should have had another person with me when I received the devastating news that night, or at least have had more time to ask questions.  I haven't been emotionally or physically the same, since that moment.

It wasn’t until several weeks later, after being told I wasn’t a candidate for immediate surgery, I learned that my cancer was more likely Primary Peritoneal Cancer.  This is a cancer that presents with tiny sprinklings like sesame seeds thorough the peritoneum and on to the ovaries and beyond.  It presents itself with the following symptoms:

·         Abdominal discomfort or pain from gas, indigestion, pressure, swelling, bloating, or cramps

·         Feeling of fullness, even after a light meal

·         Nausea or diarrhea

·         Constipation

·         Frequent urination

·         Loss of appetite

·         Unexplained weight gain or loss

·         Abnormal vaginal bleeding

·         Rectal bleeding

·         Shortness of breath

I had all of these symptoms except two.  In spite of that, my illness was misdiagnosed by several doctors. Upon further examination, in my case cancer cells were also found in the pleural fluid. My treatment plan consisted of neo-adjuvant chemotherapy, to include carboplatin and taxol, with surgery to follow when chemo was concluded.  Upon completion of chemo I had a PET/CT scan, and no evidence of cancer was found, with the exception of a small amount of pleural fluid remaining.  Since the surgery is so invasive and scraping of the pleura very risky, and is often followed with complications months or years beyond, my gynecologic oncologist recommended we give my body a rest and rescan in three months.  At that time, I still showed no evidence of cancer, but by six months it was back, and I began more chemo.

Breast cancer has received a great deal of publicity, and yes, early detection is key with mammograms for an early diagnosis, and yes, many more women have breast cancer than ovarian cancer.    However, since there are no early tests for ovarian cancer, it is statistically more deadly.  Only thirty percent of women diagnosed with ovarian cancer are alive five years later, as opposed to a 90% survival rate when diagnosed at Stages I & II. Women are not aware of the symptoms, and often doctors consider the symptoms to be similar as those with less deadly diseases. 

My story is not unique.  I’ve heard it retold time after time.  There is no screening test for ovarian cancer, and there is very little public awareness of it.  I was one of those women who knew nothing about ovarian cancer, so I had no idea that my problems were related to my ovaries.  The only thing I knew was that Gilda Radner had it, and Gilda Radner died from it!  My symptoms never felt female related at all.  I had just had a female exam nine months before, all was good or so I thought. Of course today I know a PAP smear doesn't detect ovarian cancer.

Because this disease is so insidious, the only way to get ahead of it is to know that it exists, and in what ways it can present itself.  Be aware, that when a woman complains of constipation, acid reflux and stomach cramps, it’s not necessarily indicative of a common ailment.  Until and if a screening test is developed, how many more women will find themselves in my shoes?  We desperately need public and medical personnel awareness;  this is a disease that hides and masquerades itself until, in most cases, it is too late.

When I first saw my doctors, I wish they would have considered that my symptoms could be due to a subset of ovarian cancer known as PPC.  My distended abdomen should have been a red flag.  I wonder why one of my doctors didn't suspect something other than IBS and/or a hiatal hernia?  I urge you to become aware of the symptoms of ovarian cancer.  Please err on the side of caution when your patient comes in with symptoms like mine.  My request of you today is that you remember me and my story and connect the dots when that woman presents to you with vague symptoms that could well be ovarian cancer.  You could well save a life.

Thank you.  

Other Things.

It's a long time since I've posted.  My life seems to revolve around chemo, dr appointments, scans, more dr appointments, etc.  All in all, the road traveled so far hasn't been so bad, physically.  It's the psyche part that's the hurdle I continue to try and overcome (see Nov 2012 post).  At any rate, there actually are other things I do besides let cancer dominate my every day life.  I knit.....

And I make cards and mini albums....

And I read.....

I loved this book.  A story of a preacher without a church, and the consequent changes to his life and the life of his family.  These people are not book-smart, but they are good people, down to earth, and strong in common sense, which has made them raise good, decent children.  The ending is awesome.

And best of all, I have a wonderful daughter who is also my friend....

 and I share my life with a man who never lets me down.  Not ever.

So you see, there are roses among the weeds.