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.