A Deep Kiind of Love

Excerpt from “My Grandfather’s Blessings”
by Rachel Naomi Remen, M.D.

1. So, when I had my 1st session with my psychiatrist, Dr. Gilbert, my "homework" was to read a book called "My Grandfather's Blessings," by Rachel Naomi Remem, M.D. I've created a document with an excerpt from one of the true stories that touched me deeply. It was through this story that I was able to actually see into the soul of a human, and to understand that we are made of so much more than flesh and bones. We possess divineness. This is an awesome example of that. Warning, it will touch you as well, and you may need a kleenex, but it will leave you with an overwhelming warmth and sense of spirit that lies deep within this man. And in this world, we must believe that he is not the only one. This story brought me peace. (I didn't proofread this doc, so if there are typos, sorry).

“….Other times we are strengthened by discovering beyond a doubt that our love matters to someone more than we realized possible, or that someone loves us just as we are.”
The background of this short true story is that Celia, long recovered from breast cancer, recurred. Prior to the recurrence she began a relationship with Richard, a second relationship for both of them. They loved each other, and each other’s children dearly. Richard’s first wife suffered a long and painful death from cancer.
Upon discovering the recurrence, she refused to see Richard, she refused his phone calls and returned his letters. Because Richard was relentless, she finally agreed to meet with him, intending to tell him goodbye. She explained her recurrence, told him that she had undergone another surgery and would begin chemotherapy the following week.
“He looked at her, openmouthed. ‘You have cancer?’ he asked. She nodded, the tears beginning to run down her face. ‘Oh, Celia,” he said, smiling with relief. “we can do cancer…we know how to do cancer. I thought that you didn’t love me anymore.’

A Love Story

Yup, it's true.  My cancer loves me.  It's very much like that boy in 5th grade who just won't go away.  He follows you every where, he wears that love-sick grin that makes you want to run.  But every time you look back, there he is.

So, what do I do about it?  The only thing I can do.  Ignore it, and hope it will go away.  Not very realistic, but a good tool when you are exhausted from chemo, feeling nauseous, and yes, somewhat depressed.  Because  having cancer is exhausting. It's stubborn, it's relentless, and often times it's incurable.  And it puts you in the driver's seat when  you don't even have your permit yet. For example, my favorite thing to hear when I'm in the oncologist's office is "we have several options," followed by, "which one would you like to try?"  How do I possibly answer that question?  I have no expertise in that area, I studied French and English in college.  That didn't include "Choosing the Best Chemo 101."  And all of a sudden I'm back in 5th grade, sitting at my desk looking dumb because I can't answer the question posed directly at me, and yes, that boy is still looking at me with that sick puppy dog look on his face.  And then I'm somewhat horror-stricken when I realize that I'm being asked that question because even my oncologist doesn't have the magic answer.  If she did, she wouldn't be asking me. Finally, we blindly choose together, and another fresh round of drugs begins.

During the past 3 years I've participated in weekly infusions, every 21-day infusions, and monthly infusions.  Some drugs are repeated, new ones are introduced.  Some are successful in beating the beast down, some are slow in taking their time to work, and some just don't work at all.

It's amazing to me that way back in the 60's, the years of the Cold War with Russia, we had the knowledge and capability of launching a rocket from Tucson, AZ, and it would reach Russia in under 25 minutes.  But we still can't figure out the mysterious evil that is cancer.  We still grovel in the unknown of let's try this drug no, wait, let's do this one.  After all the years of fighting this enemy, this still is no victory.  There's a plan, there's always a plan, but the end result is still unknown.

So for now, I do what everyone does with this disease.  I put my life in someone else's hands, mind you the hands of someone else who really doesn't have the answers, and go with it.  (I wouldn't be an oncologist for all the money in the world.  Too much risk, not enough reward.)  And if you can think of a better way to be a player in this game, you be sure and let me know, okay?

While I'd like to end this on a more upbeat, positive note, I just don't have one today.  And I'm okay with that.

Just Do It!

"Talking is not doing.  It a kind of good deed to say well; and yet words are not deeds."        Wm. Shakespeare

It's a constant when you have cancer.  People are always asking "Is there anything I can do?"  And the answer from most cancer patients is also a constant.  The answer is usually, "oh thank you, but I'm doing fine."  No one, not even a cancer patient, wants to appear needy or helpless. Which leaves the inquisitor to feel either useless, or let off the hook.

So allow me to clear this up.  When a cancer patient says no, don't let your actions be judged by that one simple word.  Do something anyway, because most cancer patients do not like to admit that there are things you could do, gestures that they would appreciate.  Some very simple things.  Here are a few suggestions:  call them regularly to see how things are going; call and see if it's okay if you stop by for a while (bring donuts!); call them in the morning and tell them not to make dinner that night, you are bringing it over; send them a nice greeting card once in a while; ask if you can accompany them to chemo; see if they need a ride somewhere, or something from the grocery store. There are so many effortless things you can do that would make a huge difference in the life of a cancer patient.

If you know a cancer patient, pick one of those suggestions and just do it.  Don't wait to be asked, and don't believe them when they say "oh thank you, but I'm doing fine."  Cancer is not an easy journey, neither physically nor emotionally. If you're lucky enough to be healthy, you have no idea how appreciated it will be.

Remembering and Discovering

Three very, very long years ago, on April 27, 2011, I heard the words "you have ovarian cancer" from a strange doctor at the side of my hospital bed.  The words didn't mean much to me at the time, thanks to the morphine drip that was easing both my pain and my mind.

Looking back I've learned a lot of things, many of them medical, and many terms and definitions I could easily have lived my life not knowing.  With the exception of six months, I've spent the remaining of those three years having chemo poison my innards every month, but so far, and thankfully, keeping the disease at bay, but not curing, because there is no cure.  Eventually, either the drugs or the disease will have the final say.  That's realism speaking, not depression.

Some of the other things I've learned have been both disappointing and enlightening.  I've learned that every day is a gift, and I try to use it as one.  Some days, that's harder than others.  I've learned that a simple thing such as walking is not always that simple, when just a block or two leaves me breathless.  I've learned that things I normally did in my everyday life are no longer things that are normally done in my new life.  And I've learned which family members and friends I can lean on when I need holding up; those who will call occasionally, drop me an email just to say hi, or thinking of you.  And those who don't.  For the ones who have stayed with me, I thank you.  For the new friends I've met who stand by me, I thank you.  What you offer me is priceless.

I've learned that this 'new normal' isn't really very normal at all.  Chemo week brings nausea, highs from the steroids, and downs (very down) when you come off the steroids, sleepless nights, or a sleep filled with nightmares that make my heart pound and my body sweat, (steroids are given with each infusion to prevent allergic reaction to the drugs), and utter exhaustion. The following three weeks see progression, little by little, to somewhat of a normalcy, and then, it's time to start all over again. Blood work to see what's happening inside my body, and a 'special' blood test to check for disease status (regression, or progression), followed by more chemo. My oncologist tells me I will be on chemo for the rest of my life.

We don't travel much at all.  When everyday simple things exhaust you, the thought of packing a suitcase, spending a day traveling in and out of airports, and being away from my doctor is overwhelming to me.  Going home to see everyone I would like to see is exhausting, and saying goodbye when we leave is a heartache that is difficult to describe.

But on the other hand, when I was diagnosed I was given 1, maybe 2 years to live and here I am, still waking each morning, appreciating a beautiful sunrise, the warmth one enjoys every day when living in the western part of this beautiful country.  I can go any place I want just by turning the pages of a book.  I can knit for charity and for gifts, and do other hobbies that I enjoy, I can see smiles on the faces of friends, and I can share the day with the man who travels with me on my cancer journey.   The one who sees it all, both the good and the bad, who holds me up and still can make me laugh.  Who goes with me to every doctor appt and every chemo infusion.  Because as he says, "It's not your disease, it's our disease."  Get the picture?  He is present, and he is steadfast, and I am lucky to have him, another thing I am grateful for.

So yes, although it may not be the life I would pick, it is still life and with it brings a great appreciation for things previously taken for granted.  And for that, I am grateful.  I love deeper,  I help more, even if that only means taking however much time it takes to listen to someone, I judge less and I have become more compassionate.  Because what you may see on the outside of someone, is nowhere near the person they are on the inside.  If you remember nothing from this post, I hope you remember that.

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.

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.

A Day in the Life (?) of.

Well damn it.  Last night it dawned on me that my oncs office hadn't called to confirm my appt today.  They always call.  So, I started looking for my appt card: in my purse, in my billfold, in my makeup bag, in every compartment that zipped.  Nothing.  Next went to the car and looked in all the places I could have put the card.  Nothing. Next, went to my closet and looked in all my pockets of any pants I would have worn, and every cotton knit jacket I would have worn (because it's always cold in there).  Nothing.  Got up this morning, got ready to go, but called the clinic first before we left.  Nope, nothing scheduled, nothing scheduled at all this week.  She didn't know what happened. Told me they would call me back.  Didn't call for 4 hours, so I called them back.  I am scheduled to see the doc tomorrow, and have chemo on Wednesday.  Asked them to call me back and give me my ca125 number today.  Said they would. That was two hours ago.  So.......yes, I am pissed, and frustrated, and anxious.

Angry?  Of course I'm angry. This disease (I'd like to purge the word cancer from both my body and mind).  It robs you of your dreams, your, plans, your hopes.  It leaves your future uncertain. And not just from me, but from my family as well.  Well, disease, you will do what you're going to do with me, but LEAVE MY FAMILY ALONE.

It whispers!

Ladies, please take a minute to visit:  

http://www.whyteal.org/

September is National Ovarian Cancer Month.  

So much is known about breast cancer. We are all reminded about mammograms and early detection.  Seems like very few know about ovarian cancer:  the cancer that whispers.   Educate yourself so that you have a stronger voice when you visit your doctor with concerns.  I had g.i. issues.  I was told it was IBS, I was told it was diverticulosis, I was told it was acid reflux.  Actually, both doctors were wrong.  This story of misdiagnosis is all too common.  Seems like way too many doctors don't recognize the symptoms either. It was ovarian cancer.  When your inner voice is telling you they are missing something, make them hear you!

Just When you Think it Couldn't Be Any Worse

Monday of this week I had chemo.  Here comes the poison, Carboplatin and Doxil.  On Wednesday, a Neulasta shot to pump up the bone marrow and replenish the white blood cells knocked down by the chemo.

Thursday and Friday?  Nightmarish pain all over, the headache from hell, literally can't keep my eyes open, can barely move about, but can't sleep, stomach pain, nausea.  I've probably left something out, but that's enough to get the point across.

But today the fog is lifting, and I can remember that all is not bad, when you are surrounded by love.
The kind of love from a husband who:

- tells you you're beautiful when you know you're not
- reassures you that this too will pass
- cries in the night when he thinks you are sleeping
- goes with you to all your chemo sessions and doctor appointments
- remembers to ask all the right questions when my brain can't
- reaches over and holds your hand in the middle of the night.
- learned how to grocery shop and cook so I don't have to

The kind of love from a daughter who:
- calls to see how I am doing
- makes me laugh because she knows I need to
- allows me to cry, because she knows I need to
- is smart enough to realize how much I hold back so as not to worry her
- continues to support me
- shares her life and her worries with me, because she knows it is good for me to still feel needed.

The kind of love from family and friends who:
- call me regularly
- send me cards
- don't sugar coat my illness
- remind me often how much they care.

My husband's side of the family recently held their annual golf tournament, the one we've had to miss the last two years.  All of the winning female event prizes were dedicated to me; yes, so touching!  I must admit tho, that I thought that meant I would actually get all the prizes in the mail.  I'm still waiting, people!!!!!!

Lesson learned?  Through all this, there are still gifts.  It's helpful, so helpful, to pause and remember them.  Thank you, all of you.

Just the Right Words at Just the Right Time,.

I cannot say it any better than this.

Freelance Writer and Founder of C2Bseen

by JEFF TOMCZEK

The Things I Wish I Were Told When I Was Diagnosed With Cancer

Your relationships are about to change. All of them. Some will get stronger. They will probably not be with the people you would expect. The people you want to handle this well might not be able to for a variety of reasons. Some of the reasons will be selfish. Some of them will be entirely innocent and circumstantial. All of them will be forgivable because no one plans for cancer. Carrying bitterness or anger won't help your recovery. Fighting for anyone to stick with you won't cure you. Those who can, will.

You will be determined to have more energy than you do. You will convince yourself that you are thinking straight, are able to handle all of this and do not need anyone. You will run out fuel. Your body will change first and your mind will follow. You won't lose your mind, memories or sensibility. It will all come back. But, you will be different. You will never have the same sense of self. You should embrace this. Your old self was probably really great. Your transformed self will be even better. Give into what is happening and trust it.

You are going to feel fear. Even if you are normally stubborn, confident and seemingly invincible you will finally find yourself admitting that you are scared of something. Cancer is scary and incredibly confusing. The unknowing will eat at you worse than the disease itself. You'll need distractions. Music and sleep will probably be the ones you resort to most. Reading will become difficult. So will watching TV or movies, having conversations, writing and basically everything else. They call it "chemo brain" for a reason. You will feel normal eventually. Just a new kind of normal. *When you feel afraid let yourself lean on those around you. Cry. Be vulnerable. You are vulnerable. There will be time for strength, but never admitting weakness will cause anxiety to mount and your condition to worsen. Let it all out. Yell if you need to. Sing when you feel up to it. Sob uncontrollably. Apologize for your mood swings. Treatments and prescriptions will often be the cause of them. The people that love you will understand. * Great advice, but extremely difficult for me.

The people that love you will be just as scared as you are. Probably more. They will be worrying even when they are smiling. They will assume you are in more pain than you are. They will be thinking about you dying and preparing for life without you. They will go through a process that you will never understand just like they will never understand the process you are going through. Let them process. Forgive them when they don't understand. Exercise patience when you can. Know that those that were built for this will be there when you get to the other side and you will all be able to laugh together again. You'll cry together too. Then you'll get to a place where you will just live in the world again together and that is when you know that you have beaten this.

The sooner you recognize that you are mortal, the sooner you can create the mentality for survival. There is a chance you might not make it. Just like there is a chance that you will. Don't look at statistics. You are unique and what is happening inside you is unique. Your fight is yours alone and there are too many factors to compare yourself to others that have had your condition. No one will want you to think about death, but you won't have a choice. You will think about it from the moment you are given your diagnosis. Come to terms with it. Calmly accept it. Then, shift every thought you have into believing that you won't die. You are going to beat this. Your mental focus on that fact will be more powerful than any treatment you receive.   The last three sentences are questionable, when you have been told your disease is incurable, still, it has it's place in the battle.*
Your doctors and nurses will become your source of comfort. You will feel safe with them. If you do not feel safe with them you need to change your care provider immediately. There is no time to waste. This shouldn't be a game played on anyone's terms but yours. When you find the right caretakers you will know immediately. Do not let insurance, money or red tape prevent you from getting the treatment you deserve. This is your only shot. There is always a way. Find those hands that you trust your life in and willingly give it to them. They will quickly bring you a sense of calm. They will spend time answering your questions. There will be no stupid questions to them. They won't do anything besides make you feel like you are the most important life that exists. They will never make you feel like they don't have things in control. They will be honest and accessible at all times. They might even become your friends. You might celebrate with them over drinks months or years after they have cured you. They deserve your gratitude, respect and appreciation daily. If you get upset at them during treatment know that they'll forgive you. They get that you're going through something they can't imagine- but they understand better than anyone. They see it every day and they choose to be there because they want to make the worst experience of your life more tolerable. 
You will need to find balance after treatment. Start by seeking balance during treatment. Eat well. Sleep well. Listen to your body. Explore meditation. Experiment with new forms of exercise that aren't so demanding. Embrace massage and other body therapies. Go to therapy. A therapist will be able to guide you through your journey in ways you could never fathom.   Most insurance policies don't pay for therapy.  Shame on them. Do not be too proud to speak to someone. You cannot afford to store up the intensity of the emotion that comes with fighting a life-threatening illness. This is most difficult for me to do. Let it out for yourself. *You will begin to hear your voice changing. That voice is who you are becoming in the face of mortality. Listen to that voice. It will be the purest, most authentic version of you that you have ever known. Bring that person into the world -- strengths and vulnerabilities and everything between. Be that person forever. This is one of my goals. *   

You will inspire others. It will feel weird. People you haven't spoken to since grade school will be in touch. Ex-girlfriends, former colleagues... even people you felt never wanted to talk to you again. The influx of interest in your seemingly fading life will be greater than any living moment you have ever experienced. That support is what will shift a fading life into a surviving one. Be grateful for every message. Be appreciative of each gift and each visit. There will be moments where all of this attention will make you feel lonelier than you have ever felt in your life. In a hospital room full of people with messages stuffing your inbox, voicemail and mailbox you will find yourself feeling completely alone. This is when you will realize that you could afford to have a stronger relationship with yourself. That only you walk this earth with 100% investment in you. Make the investment and use this as an opportunity to reexamine your self-worth. Love yourself more than ever and recognize how much love there is for you in the world. Then start sharing that love. You will come to see that even when you are the neediest person you know you can still be giving. Giving will make you feel better than taking. *

*Red face type are my own comments.
*Bold face type are things I found particularly meaningful, or important.

The Shadow

Well, Monday is my oncologist visit where I will find out the results of my last blood draw, and hopefully get my next chemo of carbo/lipodox.

So, the inner voice begins:  what will the numbers show, what if they're climbing, are my blood counts and platelets normal enough to receive the chemo, what if this treatment isn't working, blah, blah, blah.  This is what living in the shadow of a cancer diagnosis is like.  It's always there, following me.  Sometimes I'm really good at ignoring it, and at times like this it's like he's constantly reminding me:  "I'm still here; I'm still here."

What do I do about this?  Keep busy, try to push the negative thoughts as far to the back of my mind as possible, visit with a friend or family member, and sometimes, a little retail shopping therapy, and occasionally, when I feel especially tired of it all, I cry.  Luckily, that's not that often.  But yes, it does happen, and when it does, I allow myself the pleasure, because it always brings a strange sort of relief and peace.

So this weekend, I will be busy, busy, busy.  I can't keep Monday from coming, nor do I want to because it wouldn't be in my best interest, so I will concentrate on trying to make peace with that.  Let's see how successful I can be at that!

Short, but Right on

For today, this link is enough said:

http://www.washingtonpost.com/blogs/she-the-people/post/pink-ribbons-inc-cancer-patients-need-help-not-hype/2012/06/11/gJQA7hfyUV_blog.html#pagebreak

Protocol Perplexity

Lately there have been several discussions in my online support group about which diet is better for ovarian cancer.  Or which supplements?  Or which naturopath has the right plan?  Some of these discussions can easily escalate to disagreements, which is when I leave.  Do I really need to fight and bicker with women who share the same journey I do?  No.

And most importantly, these discussions offer no concrete proof of any treatment or diet that promises healing. Sure, there are cases where "my aunt did the 'xyz' protocol and she's healthy 20 years later." Great! That's wonderful news!  But guess what? Maybe she would have been healthy 20 years later, no matter what she did, be it chemo or some other protocol.  Not nearly enough people who have done this or that protocol are still healthy 20 years later.  If any of these protocols were successful even 80% of the time, why would anyone undergo chemo and all the ugliness that goes with it?

I'm beginning to think that if it's going to come back, it's coming back. Sure, a healthy diet is better for anyone, but the realist in me says that now that I have cancer, if it seriously mattered what I eat or don't eat, why do chemo? Why not just a healthy diet and forego the chemo? Or maybe I should combine the two???? Or maybe I should just do the chemo and eat whatever I want. Or, just maybe, there is no guarantee that what I eat or don't eat will keep it from coming back. Yes, there are women who have done everything right; some have survived and some have not. Just as there are women who have eaten whatever they wanted; some have survived and some have not. Will eating the right things help us to live with this disease in a stable state, longer? I have done a lot of reading, and I can unequivocally say I have no idea. In the end, maybe we all should just do what feels right to ourselves, for ourselves. The last thing we need is to feel guilty about the decisions we make.

Above all, what we really need in trying to live with this disease is peace of mind.  I think I would rather concentrate on achieving that as opposed to freaking out if I put a chocolate chip cookie in my mouth.