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.

And so, the Psyche Struggles

It's been a long time since I've made an entry in here.  I have realized recently that cancer is about more than having a disease.  It has been about a year and a half since my diagnosis.  I can't believe that much time has gone by already. I can't believe it's been that long since cancer has essentially taken over the way I live my life.  Not necessarily in a daily way, but more in a futuristic way.  It seems that what it comes to planning future events, the first thing to come to mind is not excitement, but instead, how will that event effect my health.  I try and try to plan a trip to MN, and keep coming back to that "I can't do that" part of the play.  Instead, my mind becomes stuck in a "what if I need a doctor, how will this stress effect my health, what if I'm ill the day we are supposed to leave," never-ending loop.  It's almost like being a teenager again, in the sense that before I can plan, instead of checking with my parents, I must 'consult' with my cancer first. And there are actually times when my oncologist tells me that "this may not be in your best interest right now," like, for example, when my brother passed away. I was told it wouldn't be wise to postpone my next chemo.  In retrospect, I should have looked into getting chemo in Minneapolis, but then again, the after-chemo side effects would likely lead me to postpone my return flight until I was able travel without too much discomfort.

Healthy people make plans without stopping for an instant to think, what if I get sick, what if I need to be hospitalized? I know there are doctors in my home state, and excellent cancer facilities.  And I know that if I need to be hospitalized, does it really matter if it's in Tucson, AZ or Minneapolis, MN.  But the disease has somehow managed to erase the logic from my mind and replace it with fear and uncertainties.  If a healthy person had these thoughts, we might consider them hypochondriacs, or neurotics.  We may even (unkindly) tell them to stop being ridiculous and get on with their lives.  Ironically, when you have cancer, you are not allowed the luxury of a simple fix to this solution.  At least not for me.  There are some people with cancer who can throw all caution to the wind and take their chances.  That just doesn't seem to be me.

To sleep, perchance to dream?

Obviously, the title is borrowed from Shakespeare, but it's fitting for this post.  Cancer = blood work, scans, chemo infusions, days spent recovering from chemo, shots to boost up white blood cell counts, and yes, facing one's own mortality.  Some days, these tasks are easier than others.

And one other thing it brings is dreams...vivid dreams.  In these dreams I see my brothers and my Dad, all who have gone before me.  Most of the dreams are pleasant, some not so much.  But much to my surprise was the dream I had last night.  I was with one of my best friends from high school, Patty Prenevost.  I'm using her real name in the extremely off chance that someone who knew her, perhaps even a family member, will see this and know that she is thought of and still missed.  Patty and I kept our friendship alive by meeting for coffee every month or so.  She passed away after a brief battle with liver cancer.  I didn't know.  My husband and I were wintering in AZ, and my last contact with her was when I sent her her annual birthday card in January.  The day after our return from AZ, Patti's husband called to tell me she had passed.   My breath literally left my body, my knees felt weak.  She never told me she was sick.  I couldn't take it in.  I think it was the only thing she never shared with me. I hung up, sat down on the floor and cried.

But last night we were together again at a high school reunion, smiling, laughing, saying sarcastic remarks about certain people (yes, I admit it....they were sarcastic, but they made us laugh).  And last night I got to hear that laugh again, see her face and enjoy her company.

So why these dreams about people I've loved and lost?  Is it the chemo, the meds I take, or me trying to face my own mortality?  I like to think that these dreams are a preview of coming attractions; that I will see them all again. I don't really know.  But what I do know is that the dreams usually make me smile in the morning, and waking up with a smile sure beats the alternative!  So thank you Patty.  It was awesome seeing you again!

Pinktober

It’s October, and everyone know what that means.  The color pink is everywhere, it’s goal to raise money for breast cancer research, or so many people think.  Actually, only 20.9% of it’s annual budget goes to research, while 39.1% goes to Public Health Education.  Really?  Is there anyone over the age of 10 that doesn’t know what Pinktober stands for?  And perhaps most shocking is the fact that a paltry 5.6% goes to treatment.

While I realize that breast cancer is devastating to any women who find themselves faced with it, I’d like to point out something that most people DON’T know.  September is Ovarian Cancer Research month.  Our color is teal.  Do you see that displayed on products you buy, are you asked by any cashier, anywhere if you’d like to donate to Ovarian Cancer Research?

Ovarian cancer strikes a smaller proportion of women annually, approximately 22,000 women in the US will be diagnosed each year.  And even if detected early, the disease is most often deadly.  There is no screening for early detection.  It is often not detected by an annual exam and pap smear.  It’s symptoms generally mimic gastrointestinal problems and is often misdiagnosed as such until it has progressed to late stage.  I know this because it happened to me.

Know the symptoms, which are often diagnosed as IBS or urinary disorders:

• Frequent urgent need to urinate
• Changes in bowel habits
• Quickly feeling full when eating
• Abdominal cramping, hardness, and bloating
• Lower back pain or abdominal pain

And the next time someone asks you if you want to donate to Breast Cancer, go ahead and donate if your feel the need, but you might also ask them why they don’t recognize that September is Ovarian Cancer Awareness Month, and why don’t they publicize and support that?  Because for the sake of all women, everywhere, awareness is key.  Research is key.  The right treatment is key.  And the only way to turn the key and unlock the mystery of this disease is by calling as much attention to it as is called to breast cancer.