Pinktober Guest Post: Melissa Ross

Pink-to-ber n A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Today we are hearing from another young woman with metastatic cancer, Melissa Ross. Melissa already had Stage IV breast cancer when she was diagnosed at not quite forty-one years of age. That was four years ago, and today Melissa is NED (has no evidence of disease). “I accept that the cancer is not gone, never will be, unless some miracle in research happens in the next few years,” she writes. “We ride the same train.” Melissa has a special message to share. Let’s listen and give her a very warm welcome!

= = =

I read a lot of blogs about what people don’t like about breast cancer, the treatments, the ridiculous things that people say and do when they find out you have it, the pain, the fear, the anger.  All of this is true and real, and everyone who is diagnosed with the disease has every right to voice these things.  When I was initially diagnosed, I had many of these same feelings, and some days I still do.  But today I want to write about another aspect of breast cancer, at least for me.  My diagnosis, like anyone who is diagnosed with a serious illness, was life changing. Change, any kind of change, is not inherently bad or good.  It has both bad and good, if you look for them.  Too often in the world we only talk about all the bad things that happen, and don’t put enough emphasis on the good things.  So today I want to write about some of the good things that have come out of this experience for me.  This may not be true for everyone, we each have our own path to walk, but this is my path.

I no longer wait for things to start.  “When I turn 21 I will travel the world”, “when I buy my first house I will have children”, “when I pay off my debts I will remodel my bathroom”.  Well, I never traveled the world at 21, and I can no longer have children, so I am not waiting to have that bathroom I have always dreamed of.  We are taught that there must be an order to our life, a time to do certain things, but this can be so misleading.  Go to school, get a job, find a mate, get married, have kids, buy a house, retire. It does not always hold true, nor should it have to.  My cancer threw me out of the framework that I had built for myself, it made me realize that my life can be whatever I want it to be, I don’t have to wait for the right time, or place, or situation.  This has allowed me to enjoy wonderful experiences, see beautiful places, and meet amazing people.  All things I would have missed out on because the “time” wasn’t right.

I love my life.  Really love it.  I love waking up and seeing the sunlight through the window, smelling the air, walking the dog.  I love that I am alive, even the so called “bad” things about life.  Do I have pain?  Yes.  But better to have pain than having nothing.  Do I get angry?  Yes.  But isn’t it wonderful that I get to feel the amazing emotions than to have nothing at all?  Perhaps truly accepting that I will not have this forever, that I will one day leave this world and all the crazy, screwed up, fantastic things that are in it, makes me appreciate it all the more, and that whatever comes after this will not be the same, that I will never see that sunlight again, never feel the fire of my anger, never have the physical sensations that we too often take for granted.  Life, any life, is truly a blessing, without it, there is nothing.

I am a happy person.  When I catch myself not being happy, whether its stress over work, stupid drivers, or idiots blabbering away on TV, I realize that my unhappiness is not due to the world, it is due to me, specifically, my expectation that things should be different than they are.  I try very hard to let go of these expectations, to choose to be happy.  I now know that happiness is not determined by something outside of me, it is mine, I own it, and nothing can change that except me.

Would I return all of this to not have cancer?  Of course I would, I’d be an idiot not to, but it is not an option that is available to me, so I must take the things I have been given, both good and bad, and make the best of them.  In the end, that is all anyone can do.

Advertisements

On the Evening of a Bad Day

I know that no one ever promised life would be fair. 

I know there is no reason that this shouldn’t have happened to me and no reason why it did.
I know that sometimes things just happen and we don’t know why.

I also know that I’m fine in myself, which is how I say that I am basically, fundamentally at peace and that a stream of quiet joy and serenity flows underneath all the hard stuff and that once I calm down I’ll be able to tap into it again.

I know all those things.

But right now? Right now I’m sad that I’m in pain and that I have advanced cancer and that my life has become so limited. (*)

I’m glad that I have friends around the world and that I can reach out to them and have contact within minutes, less. But I wish there was someone here who would put their arms around me and hold me and pray with me and stroke my hair and help me through the hard parts.

Sometimes people write very complimentary things to me in the comments of posts. That is part of the reason that I think it’s important to write about these times, too. Yes, I practice mindfulness—but not all the time. Yes, I know how to change my attitude—but sometimes I don’t have the strength to do it.

I get down, I get angry, I get lonely, I get frustrated. These feelings come and they are awful. But I also know that “feelings are not the boss of me”, as I like to say. I know that in a few hours or the next day I’ll be back to baseline.

So right now I’m going to make some hot chocolate and take a sleeping pill and set another pain pill out ready in case I need it during the night. I’m going to spend some time with my friends on Facebook—and these are real people, real friends—and then I’ll go to bed for the night.

This sonnet by Keats fits my feeling at this time. Sleep, comfort, loneliness, death.

To Sleep

O soft embalmer of the still midnight,
      Shutting, with careful fingers and benign,
Our gloom-pleas’d eyes, embower’d from the light,
      Enshaded in forgetfulness divine:
O soothest Sleep! if so it please thee, close
      In midst of this thine hymn my willing eyes,
Or wait the “Amen,” ere thy poppy throws
      Around my bed its lulling charities.
Then save me, or the passed day will shine
Upon my pillow, breeding many woes,—
      Save me from curious Conscience, that still lords
Its strength for darkness, burrowing like a mole;
      Turn the key deftly in the oiled wards,
And seal the hushed Casket of my Soul.

(*) Up to this point, the text is copied from my Facebook status.

Cancer cannot take this away

Image credit: pixelsaway / 123RF Stock Photo Used with permission.

Image credit: pixelsaway / 123RF Stock Photo
Used with permission.

Yesterday I was in enough pain to take the stronger medication for it. I was also sad and upset about several unrelated bits of bad news that I’ve received recently. I was feeling alone and needy and, truth be told, more than a little sorry for myself. I spent most of the day in bed, feeling drugged and loopy and groggy and dozing off and on, feeling needy and weepy when I was awake. It was not a good day.

Today I woke up and I’m in enough pain to take the stronger medication for it. I am still sad and upset by the bad news. I am still alone and I still need help with simple tasks. But I am not feeling needy, I am up at the computer writing this post, and I am having a friendly chat with my home help, L, who is here working her magic.

So what is the difference between yesterday and today? Yes, my home help L the wonder-worker is here, but the truth is that hours before her arrival I was up and showered and dressed in clean clothes and sitting at the computer doing my sorely neglected email. What changed?

The pain didn’t change. The fatigue didn’t change. The cancer didn’t go away. The sleep issues were not resolved. Why am I up and smiling today? I think it’s the A-word: attitude. Before I went to sleep last night I made a decision to change my attitude.

It’s as simple as it sounds and as difficult as it sounds. I wrote a short update in a Facebook cancer support group to which I belong, and I was complaining about everything from bone tumor pain to mosquito bites. I knew that I would get lots of “poor you!” and hugs and supportive comments and a joke or two in response. But by the end of the my update I found myself writing:

The best thing on earth is that tomorrow is a new day! And also I was able to get up and make some food and drink. And my home help is coming tomorrow. So I should just get off the pity pot and make a gratitude list. 

Damn. I hate it when I talk myself out of my moods! 

I somehow allowed myself to change the focus, to look in a different direction, to change my attitude. Sometimes that’s all it takes.

When I was an undergraduate (a long, long time ago in a galaxy far, far away) I was profoundly impressed by Victor Frankl’s Man’s Search for Meaning. This is one of the books that changed my life. In particular, this: “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” 

That blew me away forty-some odd years ago and it still does. No matter what cancer takes away from me. No matter what bad news I receive, no matter what problems I face, I have the freedom to choose how I relate to it. This doesn’t mean mindlessly smiling through a crap storm (remember – not recognizing reality is insane), but it means that I can choose to collapse under it, to fight it, to accept it, to try to change the circumstances, to move out from under it. I can choose to identify myself with the crap storm or to remember that it is separate from me, it is not me. As a religious woman, I can choose to put my faith in the hands of the Creator, remembering that in my religious tradition God helps those who help themselves.

Whatever I choose–even if I choose through inaction–it is my choice. That is the power that is left to me, “the last of the human freedoms”, and when I choose to exercise it I reclaim some of my personhood. My personhood, the choice of my attitude: cancer cannot take that away from me.

Don’t forget: Anyone who is affected by metastatic breast cancer is invited to submit a post for me to publish during October. If you are interested, please contact me at the email in the sidebar or tell me in the comments. We want to hear your voice!

Cancer Words

I’ve written quite a bit about the power of words. Words are potent, sometimes in magical. Words do not only express our lived experience, they also give it shape, name it, describe it. One aspect of philosophy of language deals with the interaction and mutual influence of words and thought. Fields as diverse as linguistics, clinical psychology and economics address this idea in different ways.

But everyone agrees that words are important, powerful. That is why, like many other people, I care about what labels I attribute to myself and others. I have written quite a bit about that. You might want to look at The Problem with Surviving and Have I Survived Yet, for example.

So it was very interesting to find a link to “After Cancer: Debate About Terminology Beyond Treatment” in today’s Medscape Nurses newsletter. This is part of a discussion that began with “Cancer Survivorship: Why Labels Matter” (J Clin Oncol2013;31:409-411) by Canadian social scientists Kirsten Bell and Svetlana Ristovski-Slijepcevic.

Bell and Ristovski-Slijepcevic clearly attribute importance to the terms we use. The Medscape article quotes them: “Words not only describe, but construct, the phenomena under question,” they wrote, explaining that the term “someone who has had cancer” may ignore “the ongoing presence of cancer in the lives of many” who have had the disease.”

The discussion is continued by Paolo Tralongo and his colleagues, who suggest a range of terms, but attribute the importance of terminology to the way a term helps or hinders a patient in coping with the disease. They suggest a range of terms–patients with…

  • acute cancer (for people in treatment)
  • cured cancer (for people “who have long been disease-free and have reached a time when their mortality risk does not exceed that of their age and gender peers”)
  • chronic cancer (for people with advanced cancer that alternates remissions and relapses)
  • chronic cancer, active phase

I strongly encourage interested people to follow the link above to the Medscape article. There you will also find links to the original articles and letters in the Journal of Clinical Oncology. 

The word “survivor” annoys me for a number of reasons that I’ve described elsewhere. The main reason it annoys me at the moment is that I haven’t survived it yet; I still have cancer in my body. The term “chronic cancer” intrigues me. My stage IV disease is advanced, but not yet terminal (i.e. I am not expected to die in the next several weeks or months). Perhaps “chronic” is the best way to refer to it.

“Chronic cancer” has the advantage of being clear, specific and easily understood. It is very low on drama, even less dramatic than “living with cancer”, which has been my preferred term to date. I’m not sure yet, but I think I like it.

(As terminology. The disease itself is one of the worst things that has ever happened to me.)

Balancing Hope and Cope by Dr. James C. Salwitz

It seems to me that while we should never forget the possibility of the miraculous, and try always to avoid despair, that our patients are powerful beings and perhaps our true goal should be to move from the limits of hope, to the freedom and possibility of cope. (Emphasis mine – KT)

These words were written by James C. Salwitz MD, a medical oncologist and clinical professor of medicine in New Jersey (USA).  He blogs at Sunrise Rounds and is a frequent guest blogger on KevinMD.com, which is where I read the following post. It is reblogged here with the kind permission of Dr. Salwitz.

Have you experienced “the limits of hope”? Do you know “the freedom and possibility of cope”? Please read the essay and let us know what you think.

=====

The fine balance between hope and cope in cancer patients

At tumor board recently, we discussed what we tell our patients about prognosis.  Some oncologists give detailed information, including specific survival times.  Others never discuss the future, and let the events of the illness teach patient and family.  All try to adjust what they say by what the patient needs, because each physician expressed one core goal; “Whatever I say I don’t want the patient to lose hope.”  I thought about that message for a while and decided they are wrong.

The Oxford English Dictionary defines “hope as to “entertain the expectation of something desired.” Synonyms, according to Roget, include”faith, possibility, silver lining and no cause for despair.”  These are wonderful and powerful feelings.  My concern is that they are feelings which have at their core a tendency to look away from hard truth.  If our primary goal is to “hope” that things will go well, it may mean that we deny the reality that they are likely to go badly.  I worry that when we deny reality we deny ourselves the chance to cope, instead of hope.

A 65-year old man has stage 4 pancreatic cancer.  His oncologist does not want to take away the man’s hope, so he immediately offers chemotherapy.  The doctor does not say that this is a 100% fatal condition, but instead spends their visits talking about treatment and side effects. The man spends the next four months getting chemo, which has a minimal benefit.  Then, instead of talking about prognosis, another chemo is offered.  Never does the man hear the message, “you have a fatal disease, there is no absolute rule you must take chemo, you may want to spend the time you have doing something other than visiting the cancer clinic.”  Hope of a chemotherapy induced blue-sky substitutes for complete information.

We all balance, hope and cope.  We must use denial of the bad things that can happen, just to get through our normal daily lives, let alone deal with disease.  Hopes and dreams are important to our emotional health and each of us has different needs.  On the other hand, in my experience, the vast majority of people are emotionally strong and, with patience, teaching, support and love, can learn to cope with even terrible news.

A colleague of mine told me the story of a young neighbor, with school age children, who died of lung cancer.  While she underwent aggressive medical care, she also received honest information regarding the fatal nature of her disease.  She used the time at the end of her life to design, write and even film what she wanted for the future of her children, so that she would always be part of their lives.  If she had been given only hope, and never the opportunity to cope, she might have might have gone blindly forward with treatment and been astonished when suddenly the end arrived.

I have deep respect for the compassion of physicians who commit their careers to sitting at cancer’s bedside. Their sensitivity to the emotional needs of their patients is in the finest tradition of their profession.  However, I wonder whether there is a tendency in modern medicine to say little, offer too much and perhaps deny, in the service of hope.  It seems to me that while we should never forget the possibility of the miraculous, and try always to avoid despair, that our patients are powerful beings and perhaps our true goal should be to move from the limits of hope, to the freedom and possibility of cope.

Have I survived yet? Part I (October Repeat)

October being Anniversary Month, I am republishing some of my favorite posts. Today’s is the first of two posts that attempt to explain my attitude to the cancer and why I choose to say that I am “living with” cancer; I am not fighting it or suffering from it, and I haven’t survived it. The second part is here. Thank you for reading.

This is not a cancer blog; it’s a blog about my life. My life is about flowers and lace and words and languages. It is also about having only one breast and limited use of one arm, about periodically going to a place where they inject deadly poisons into my veins. Remember “We had to destroy the village in order to save it”? (See Ben Tre if you are too young to remember or old enough to have forgotten.) They had to mutilate my body in order to save it. They have to poison me in order to heal me.

Once again, my life is about mysteries and contradictions, about thread wrapped around air.

The vocabulary of cancer treatment is often very violent. We fight the disease, we kill the wildly proliferating cells, we destroy the tumor, we wipe it out. I hate that approach. It is completely foreign to my core values, to how I try to live.  I try not to use those words. I prefer to say that I am living with cancer. When I want to be French and Franciscan and whimsical, I even talk about frère cancer, borrowing a page from Francis of Assisi who wrote about “our sister bodily death” in the Canticle of the Sun.

I don’t use the vocabulary of war in talking about cancer because war has a winner and a loser and no one knows which side is which until the dust clears. I prefer the language of coexistence: living with. The cancer and I share space. That doesn’t mean I don’t treat the disease, and I’d have infinitely preferred not to have to share, but it does mean that I do not invest my mental, emotional and spiritual energy in battle and thoughts of destruction.

Our words inform our thoughts, and our thoughts shape our experience of reality.

Living with doesn’t always mean “liking” or even “getting along”. Successfully living with a spouse or a roommate or in a family means respecting each other’s personal space, not impinging on their rights, not imposing our own will on the other one without their consent. Sometimes it means speaking up, protecting our space and our rights because the other one doesn’t respect them. I didn’t invite cancer into my life, but in it came. Cancer is not good at sharing space, does not play well with others. Okay, then. That’s a reality I have to deal with. Cancer and I are living in the same body now, so how can we do that successfully?

(I would like to thank Dr. Elaine Schattner, @medicallessonsauthor of http://www.medicallessons.net/ for the original inspiration for this post.)

It’s Cancer, Not A Stubbed Toe!

All this breast cancer awareness is very nice; all the pink ribbons are very pretty. It’s nice that people are becoming aware of the need for early breast cancer detection and treatment. It’s a relief that people can say the words “breast cancer” out loud in mixed company.

An unfortunate effect of all the tee shirts and posters and cute bumper stickers  is the trivialization of breast cancer. “If you have to have cancer, that’s a good one to have.” “Oh, no one dies of breast cancer any more.” “It’s not like a really bad catastrophic illness, after all.”

Are you serious?

I do my  best not to harp on it. I work very hard at being cheerful and positive to the world at large.  Why can’t people attribute that to my character, to my efforts at being a kind and considerate person? Why must it so frequently be interpreted as “how wonderful! She must be getting better!”

It is hard to tell people who love me that I am not going to get better, bar an act of God. It is even harder to tell them so again and again. I know it’s hard for them, but it’s hard for me, too. I know I’m being unreasonable in expecting people to be tuned into my mood all the time. I know that. But I don’t think it’s unreasonable to expect people to wait for cues from me before they start skipping along down the (pink) petal-strewn garden path.

Caught early, breast cancer is more easily treated. (But may still recur at a future time.) My cancer was not caught early. I was at Stage III (of four stages) on diagnosis. Now I have distal metastasis – Stage IV. These days people can live for years with Stage IV cancer, but that is not the same thing as health. Living with a maimed body, pain and weakness is still life – and I’ll enjoy it as long as I can. But it is not health. The cancer will kill me. It will kill me sooner rather than later.

I don’t go around with a long face and I rarely expose my frustration and anger to other people like I’m doing now. Sometimes it just boils over.

Take Umbrage or Move Forward?

This poem by Ben Downing appeared in the July/August 2012 print edition of The Atlantic. By means of simple couplets and just four uncomplicated sentences, it communicates a home truth: “[umbrage] makes us less”.

Umbrage

Taken, given:
friendships riven.

From shadow or shade,
it instantly puts paid

to hard-won clarities
and causes us to freeze

up with unearned righteousness;
it makes us less.

How much better to combat it.
We should take umbrage at it.

There is a quotation lately attributed to Benedict Arnold, the war hero-turned-traitor of the American Revolution: If your great umbrage would care to meet my high dudgeon at 12 paces, I would be happy to entertain you at dawn. I haven’t been able to confirm the quote or to find any context for it; in fact, it appears to have originated in a History Channel film. Be that as it may, it is a wonderful example of where taking umbrage can lead – not to resolution of problems, but to “friendships riven”.

You know those people who take everything personally? I used to be one of them, and let me tell you – it is a painful way to live. I spent hours – days! – feeling hurt, angry, frustrated. I was paralyzed,  chewing over what I should have said, imagining what people thought of me, planning how I would get back at them. (I never did.) In other words, I was blocked. There was no way to move forward while I sat wallowing in so much powerful negativity.

Eventually, I worked that out and realized that I had to start taking responsibility for my feelings. The self-help world is full of pithy sayings to this end. What people think of you is none of your business. When people insult you, it says more about them than about you. No one can make you feel inferior without your consent. Feeling resentment is like drinking poison and expecting the other person to die. I decided to quit worrying about the others and to make my life as good as I possibly could. I never looked back.

Of course, I still get angry sometimes. I can still feel hurt by an inconsiderate remark. I still react with pain to insults. The difference, I think, is in the duration and in what I do with the feeling. These days I can usually realize how I’m feeling, understand why I feel that way, make a decision where to go with it. Sometimes I have to look at myself and deal with the truth in hurtful words, change myself. Sometimes I can laugh off the insult as being based in the other person’s inner world.

Sometimes they really hit on a sensitive point and it’s not so easy to move on, but I do my best to get over it with the resources I have at my disposal. It’s not always quickly accomplished, but it’s always the goal. You know the saying “Living well is the best revenge”? That’s not the reason I work on myself and try to become a better person, but as a side effect it’s not entirely unwelcome.

Apocaloptimists Unite!

I am essentially optimistic, a fundamentally happy person. Both statements are true. I am, however, not a bliss ninny. As I’ve said so often, accepting reality doesn’t necessarily mean liking it. As a relatively well-balanced person, I don’t pretend that I don’t feel sadness, frustration, fatigue. In fact, I’d go so far as to say that optimism and fundamental happiness cannot exist in a fantasy world, and it is only in fantasy that sadness, fatigue and frustration are absent. What keeps me optimistic and able to return to my baseline happiness is that I know the darkness is not the last word.

At the beginning of this year, I wrote:

It’s all about choice. Without choice, I feel helpless and depressed. With choice, I can decide not to concentrate on the ripples that disturb the water’s surface but instead turn my attention to the underlying serenity of the deep. I can choose to lean on the Rock from whom I draw strength. I can mourn my late friend and grieve over what was and what might have been while still living well. I can be sad without sadness taking over my life.

I can also choose to spend time looking at the ripples and being upset at the disturbed surface of the pond. It’s okay if I want to do that now, because I have remembered that it’s my choice.

And whatever I choose, it takes nothing away from the hard-won fundamental happiness of my being. It will still be there, whenever I choose to draw on it.

That basic belief, a knowledge at the bedrock of my awareness, keeps me going on days like today. Today I am feeling very frustrated by my poor health. I am having some worrisome symptoms that keep me from working. I am having some pain. It’s not a good day, but for some reason I feel better in myself – emotionally lighter – today than I have for the last few days. I think it may be because I can look at the negatives and know that they will not last forever.

I lifted this off a friend’s Facebook page:

Right. That about sums it up.