Pinktober Guest Post: Sylvie F. (en français)

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 will hear from Sylvie F., a member of a French-language IBC/BC support group in Quebec. With her post, we are starting a new phase of Telling Knots – bilingual posts!  Avec ce poste nous commençons une nouvelle phase de Telling Knots- des postes bilingues! 

Sylvie writes (click here for the English):

Hello, je suis Sylvie, une femme de 51 ans qui vit en France, 2 filles, 20 et 12 ans, touchée par le cancer du sein depuis dix ans, des métastases pulmonaires depuis 2012 et qui essaie de retrouver une vie quotidienne la plus normale possible. 

La vie avec des métastases est une vie en sursis, un jour après l’autre mais l’avenir s’assombrit entre angoisse et jours plus cléments, les personnes ne savent souvent pas ce que cela signifie, par exemple mon chef pense que je suis en rémission et si je suis fatiguée maintenant, mon état ne peut que s’améliorer, s’il savait que je vis à l’heure actuels mes moments les plus fastes malgré les séquelles et la fatigue, que l’avenir est un mot qui nous fait peur, avec le spectre de la rechute, des douleurs et de la déchéance de la fin de vie, à l’heure où les collègues font des projets de retraite, il est gentil, je n’ai pas envie de l’assommer avec ce qui risque de m’arriver, on ménage nos proches car la réalité fait peur. On est comme des funambules sur le fil de la vie et un jour ce sera la chute.

Translation:

Hello, I’m Sylvie, a fifty-one-year-old woman with two daughters, aged 20 and 12 years, and I live in France. I have had breast cancer for ten years and metastasis in my lungs since 2012. I am trying to live as normal a life as possible.

Life with metastases is a life on probation, one day after the other but the future gets darker, between anxiety on some days and other days, better. People often do not know what this means; for example, my boss thinks that I’m in remission and if I’m tired right now, it a sign that my condition can only improve (!!!).  If he only knew that in reality, right now is my best time, despite the side effects and extreme fatigue. “Future” is a word that frightens us with the specter of relapse, pain and decay at the end of life, at a time when colleagues are making retirement plans! It`s ok, I don`t want to scare him with what might happen to me. We want to spare our loved ones because the reality is so frightening. We are tightrope walkers on the thread of life and one day we’ll fall off.

Pinktober Guest Post: Jen

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.

Jen wrote today’s post. Her story is very special because she is one of the very view metsers that have gone into remission. Jen was diagnosed in 2008 at 41 years old with Stage IV breast cancer (liver and bone mets),  Her2 and ER positive.  She is a single mom with two daughters. Fortunately, Jen had a complete response to chemotherapy and has had no evidence of disease (NED) for over five years.  She’ll be on Herceptin for the rest of her life. Let’s turn it over to Jen now; please give her lots of comment love!

. . .

Oh the funny looks I get when people ask if I am doing the Komen Race for the Cure and I politely say I do not support Komen.   WHAT??  You have breast cancer?  WHY?

Well, I guess I wish they would change their name.   Komen is not for the cure.   The cure is not a hideous pink awareness campaign.  The cure is not about pom poms and awareness.   The cure is completely about research.   Komen gives less than 18 percent toward research and only 3 percent towards metastatic breast cancer research.  For clarification, early stage cancer does not kill.   Metastatic breast cancer  is what kills.

Thirty percent of early stage breast cancer will eventually turn metastatic.   And 97 percent of metastatic breast cancer patients die.   With all this awareness, it is amazing how many women are totally misled.    After 8, 10 or 15 years, the cancer has returned and they are dumbfounded because they were told they were 98 percent cured. That 98 percent was a five year survival rate which is touted constantly.  Seriously, these poor women are in shock that they are now metastatic. How often does the awareness campaign cite these statistics????

What can I tell you about being a metastatic breast cancer patient?   I was diagnosed at the age of 41 with Stage IV right from the start.   I found my own lump and the mammogram could not pick it up even though it could be felt.  Neither did the ultrasound.  When finally diagnosed six months later, I had Stage IV cancer spreading to my lymph nodes, liver and bones.     I am a single mother of two daughters.   I work full time and have had to continue working  full time as I am the sole source of income and insurance.

Since May 2008, I have had treatments every three weeks  and that is over 100 treatments so far.  The thing about metastatic cancer is that I will never be done with treatments as long as I am alive.   They may change as treatment fails but I will always be on treatment.  I am lucky as my treatment, for now, has only a few side effects and I can manage fairly well.   For the first six months, I was not well at all and many others live years struggling like this.    What people do not realize is that by February every year, I max out my out of pocket expenses and immediately have $2500-$3000 uncovered expenses.   Not to mention the co pays with doctor’s appointments and prescriptions.   Also, I have to take off work one afternoon every three weeks.      Finally there is the dark cloud over my head saying, “you have a terminal disease”.    Ninety-seven percent will die from this disease.

So when you look at me and see that I look pretty healthy and normal, you should look a little deeper and see that I am afraid, financially burdened, tired, and angry.   I am angry that pink brain washing, especially in October, has taken center stage and presented a pink happy image that we are really making strides against cancer.   I am angry that so many people make money off our struggles and pawn it off as supporting breast cancer awareness.  I am angry that if Komen was keeping their original mission, the money would be going into research that finds a cure.  I am angry that all this attention and enthusiasm couldn’t be rallied in to research that makes a difference.   I am angry that I know so many wonderful women and many very young women and young mothers who are suffering and dying.   I am angry that no awareness is drawn to the death rate and that this has continued to happen at the same rate as it did back in the 80’s when Komen was started.

October is a very difficult month for those with Metastatic Breast Cancer as we are the ones who feel failed.  Where is our hope?

The Invisible Snake

I was listening to an audio book, a detective novel by Jeffery Deaver called XO, part of the Kathryn Dance series. The story is about a young country singer who is being stalked. This stalker is very clever, very intelligent, very skilled at not being where he might be expected to be and showing up in unexpected places at unexpected times. The singer, not surprisingly, is terrified.

A local police detective tells a story. (I’m paraphrasing because I don’t have a print copy of the text.) One summer, he recalls, he saw a huge rattle snake in his back yard. The biggest rattler you’ve ever seen. He went into the house to get his handgun to kill it, but by the time he got back outside it was nowhere to be seen. Was it under the steps? Behind the barbecue? In the shrubbery? Underneath the house? Inside a pool toy? He couldn’t find it anywhere. “The invisible snake,” he called it, making it a joke for the sake of his frightened children.

But that invisible snake, he said, ruined the back yard for him and his family that season. They couldn’t go outside and enjoy it because no one knew where the snake was, and one of them might end up getting bit, maybe even one of the small children. That snake was more frightening invisible than it was in plain sight.

I thought of this during a Facebook conversation with Jody Schoger about a blog post by Uppity Cancer Patient called “If, Not When“. Uppity Cancer Patient (UCP) and I have different points of view about this, and Jody and I differ, too. I don’t know UCP personally, I’ll leave her out of this for now (but if you’re reading, please jump in and join us in the comments).

UCP writes about the “land of if” (treatments stop working) and the “land of when”. You really should read the entire post (at the link above), but here is a taste:

I don’t want live in the Land of When.  That’s like living in Purgatory, and I hear from the Catholics that that’s not a pleasant place.  I want to live in the Land of If instead. A land where the question is, if the cancer progresses?  If I am disabled? If.

That’s the land that most people live in. Most people don’t go through the day thinking, I will be disabled, I will be in pain, I will suffer.   What can it hurt for me to live in the Land of If too? I might be disappointed if the cancer progresses? 

I’d rather experience disappointment if the cancer progresses, than to experience  that disappointment every day of my life.  Even if I only live 30 more days, living in the Land of If sounds much more pleasant than living in fear.

I don’t know anything about UCP’s current health status, other than that she is living with metastatic cancer. I don’t know how long ago that started or where her mets is or any of the rest of it. I know that Jody has written in her blog that after fifteen years of being NED (having no evidence of disease):

The scans showed a different, but not rare, metastatic trail. There is nothing in the lungs or liver; but lymph node involvement and small nodules in the peritoneum and along a lymph chain that travels behind the diaphragm. There are positive nodes in the left axilla and neck, which were discovered by ultrasound. There is NO second primary cancer.

Jody has said online that although she has lost a lot of weight, she doesn’t feel particularly unwell at this point.

My metastasis was found by the end of my first year living with breast cancer; it is in the bone. I’ve had these bone tumors for over eight years now. They hurt. They interfere with my daily life and I’ve had to start taking narcotics for the pain. Over the last year, the mets has progressed more than it has in the several years prior and I’ve been having increased pain.

I am most definitely living in the “land of when”. I have kind of a theory that people who are newly diagnosed and those who are NED populate the “land of if”. I know I can’t live there any more. For me, it would be flying in the face of reality. For me, it is not a question of if treatment stops working but when it will.

This is one of those issues with no right or wrong answer, and I am very interested in what other people living with cancer and their family, friends and caregivers think about living in the “land of when” and the “land of if”.

How do you feel about the invisible snake?

Enough!

I am sick and tired of dealing with stuff.

I’ve had it up to here with calmly facing reality.

I am well and truly fed up with creative problem solving.

I have metastatic cancer. I am in pain. I am going to die much sooner than I should. Isn’t that enough? Will someone please turn off the shit faucet?

It’s nothing huge this time, but even a feather can be just that little bit too much. I’ll write again when I’ve calmed down.

Pain, physical and mental

First a quick update on the cancer front. There is new pain in my ribs. The diagnostic radiologist didn’t see anything on the ultrasound, so she’s recommending a PET-CT as the next step. I haven’t been able to reach my oncologist (who is the one who has to order it) through the clinics where she works, so I’m going to call her on her mobile. I don’t like to do that, but after discussing it with my GP, that’s what I decided to do. I’ll try to reach her today. I don’t like being importunate and I always avoid taking advantage of anything that might smack of privilege, so it was a difficult decision for me to make.

Then there are the mental health issues. When I saw the onco a week or two ago I discussed my anxiety with her, and we talked about the prevalence of anxiety in people with cancer. She was very emphatic about it being a quality of life issue and strongly encouraged me to talk to my GP about it.

Now, I have never explicitly stated in this blog that I used to be a mental health professional, but perhaps the time to “come out” has arrived. Like many MH providers, I apply a double standard to myself, preferring to think that I can deal with just about anything using my own resources. Like many MH providers, I’m full of bull puckey. In point of fact, I am well past the point at which I’d suggest to friends, let alone patients, that they need help.

So I packed up my false pride and machismo (machisma?) and asked my GP, who is a former colleague, what he thought. He kindly and matter-of-factly asked a few open questions and offered me Venlafaxine (also known as Effexor), a drug that is used for depression, anxiety and even neuropathic pain (like post-mastectomy pain syndrome). I’ve agreed to give it a try, along with my usual routine of quiet prayer and meditation, mindfulness exercises and as much exercise as my exhausted body can tolerate.

So that is what taking care of myself looks like today. Writing openly about these difficulties is also a way of taking care of myself, and maybe also of encouraging other people to take care of themselves. That is the paradox of writing a blog like this. I started it for myself, and its primary purpose is still to provide an outlet for my thoughts and feelings. Over time, more and more people have started reading it, and some people have told me that they are able to relate to it and get something positive from it. That makes me very happy. Thank you.

(When I get news about the PET-CT, I’ll post an update here or on the blog’s Facebook page Telling Knots, the 30%.)

I have WHAT? Part 3 – You have cancer.

I wrote Part One (Discovery) of this series last December, followed quickly by Part Two (Biopsy). It’s taken me over half a year to write the third part of the series. The biopsy was a traumatic experience for me and the way I write is to bring myself back to the experience itself. Writing about it left me more upset now, years later, than I was then. At the time I was shell-shocked and didn’t have the internal resources to really feel everything. Now I do have those resources. Something of a mixed blessing, to tell the truth.

All that is to say that you may want to read those first two posts before this one.

Almost a month after the biopsy, I received a phone call, telling me I had an appointment with the same professor who had done the biopsy. I wanted to ask if there was anyone else who could see me, but I was still too much in shock to speak up for myself. Oddly, I chose to go alone.

The appointment was in the same place as the initial mammography and ultrasound and the biopsy–the general x-ray department of the clinic. I arrived about fifteen minutes early and checked in with the very busy receptionist. I took a seat as she instructed.

I waited and waited, growing increasingly nervous and agitated. I could hardly speak when after about an hour I went up to the receptionist and asked what was happening. She curtly told me that “they” knew I was here and to take a seat and wait patiently. (Why do some medical and ancillary personnel feel that they have the right to speak to patients as if we were small children?)

After another forty-five minutes or so, I saw a nurse coming out of the hallway where I knew the professor’s office was. I went up to her. “Excuse me.” Her eyes widened. Clearly she was not used to being accosted by patients. “Do you work with Professor Tact?” “I do.” “Could you please tell him that Knot Telling is here and I’ve been waiting for a couple of hours now to hear the results of my biopsy?” Her expression changed to one of pity and she said, “Wait here,” and stepped into the professor’s office.

Now, it must be said that by this time I knew it was a malignancy. You don’t get called to an appointment with the professor to be told nothing is wrong. I sort of knew it was a malignancy from the moment the mammography technician told me to sit in the hallway and wait for an ultrasound. But still…

I am sitting at my computer in my home. This is just a memory. So why do I feel the icy fist clenching my heart and why are my breaths  quick and shallow and why are there tears backed up behind my eyes? Hey, here’s a good thing about having metastatic disease: you never again have to be afraid of hearing the words “you have cancer”. But back then I was still irrationally hoping for it to something else, anything else.

The nurse opened the door to the office and waved me in. She left and shut the door. The professor was yelling into the telephone, demanding to know who was at fault for something. The young doctor who had done part of my biopsy was standing behind his chair. I stood just inside the door, not sure if I should wait outside until he was done with his call or what. He looked up and waved me to a chair in front of the desk. I sat down.

“Tell her to come in here,” the professor shouted as he banged down the telephone and picked up my file. He turned a few pages back and forth and then looked up at me as there was a brief knock at the door and a secretary came in. “I’m busy,” he yelled at her. “You just stand there until I finish with this.”

I was beside myself. I didn’t want an audience while I got this news and I didn’t want to be an audience to whatever scolding that lady was going to receive. I was still too cowed to say anything. Professor Tact glanced at me and then back down at the file. “Okay, it’s malignant, but we knew that.”

I felt as though the top of my head was floating away. I couldn’t feel my hands or feet. I heard him yell at the poor secretary to leave and come back when he called there. I saw the top of the desk, I saw the young doctor’s pitying face, I saw the professor’s hands turning pages in my file.

I don’t remember leaving the office or the building. I remember calling my GP and telling him I needed to see him, and he said he had the results on his computer, too. I don’t remember where I went when I left the clinic, if I went home or to my GP or my priest or what.

I do remember knowing that things would never again be the same.

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.

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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.

Wednesday Video: Faces of Metastatic Breast Cancer

Today’s video is from facesofmbc.org. These words and images open a window into some aspects of living with metastatic breast cancer. The video is mostly upbeat and if I were to sum it up I’d say that it is about living until you die.

Tired to the point of tears

I cried this evening.

I began to get tearful while talking to a friend on the phone, describing how tired I’ve been lately. Just tired. “It scares me,” I said, and I welled up. I did my best to keep it in but only partially succeeded, so I went and blew my nose and splashed water on my face and came back to the phone, declaring myself to be “just fine”.

After the phone call I set about doing evening things  – tidying the house, wiping the kitchen counters, going upstairs to get ready for bed – and I burst into tears. I feel like I’m declining – slowly, but inexorably. 

I’m not ready yet. So much left to do! There’s a major writing project that is barely off the starting block. There are people I haven’t yet told how important they are to me. There is a broken relationship in my family that I’d love to mend before I leave. 

Then I realized that it’s still not death that is worrying me, but the inactivity of end-stage illness. I am nowhere near that point, but I find myself thinking about it more often recently. This increasing fatigue makes me think of it.

Being the person I am, I began researching cancer-related fatigue. This is a way of gaining control: perhaps there are factors I can influence. Even if there are not, knowledge is a kind of mastery for me. Things are less intimidating and frightening if I understand them.

I found this diagram at CancerNetwork, home of the journal Oncology. It is from an article called “Fatigue and Dyspnea” by  Sriram Yennurajalingam, MD and Eduardo Bruera, MD of the Department of Palliative Care and Rehabilitation Medicine at M. D. Anderson Cancer Center and was published on 11 November, 2011 in the online edition of Oncology.

I can see I’ll be referring to it frequently in the coming days. I already see some factors that I can influence and probably change with a resultant improvement in my energy level.

• Dehydration. I am very bad at getting enough to drink, especially in the winter. I already have a medicine tracking sheet, so I’m going to add a column to it where I can keep track of how much I drink each day.
  
• Pain/drug side effects. I need to rethink my decisions about pain control, to discuss it again with my doctors.
• Psychological distress. I will stop diagnosing myself (I’m fine!) and arrange to be evaluated, especially for depression and anxiety.

And now I feel much better – for real this time. I’ve gathered information and started to make an action plan. It’s a quarter to one in the morning; I should probably think about getting some actual sleep after all this talk about fatigue.

I have WHAT? Part 2 – Biopsy

A breast cancer cell.

(Please click here for Part 1 – Discovery.)

It was after Christmas when I went in for the needle biopsy. My friend J, a critical care nurse, accompanied me. We sat in the corridor outside the ultrasound room until I was called in. J was ready to come in with me, and I really wanted her to, but it was not allowed. “She’s a nurse, please let her come in.” I was pretty much begging, but they said there wasn’t room.

I took off everything above the waist, got up on the table and was placed in position by a young woman. I soon found out she was a young doctor being trained in the procedure.

The head of the department, a professor, came in and began to speak to the young doctor without addressing me. He spoke to her sotto voce. I was trembling with anxiety and my eyes were filled with tears. “Could I have a Valium or something, please? I can’t take this.” The older doctor addressed me for the first time. “NO!” I was shocked at his vehemence. “I’d rather have a scared patient than a sleeping one.” “Five milligrams of Valium won’t put me to sleep, but it will help me hold still.” “I said no.” Charming man.

I was expecting a fine needle biopsy (FNA), so I was unpleasantly shocked when I saw the “gun” for the core needle biopsy. “Gun?” I squeaked. “What was she expecting,” the young doctor asked her professor. “Probably an FNA (1),” he replied. He turned to me. “We don’t do those any more. Core needle gives a better sample.” At least he was talking to me.

The younger doctor first did an ultrasound of my left breast and then injected a local anesthetic to the site she was going to biopsy. It hurt. I cried soundlessly, not in pain but out of fear. I was afraid to have the procedure, afraid not to have it. I was afraid to move. I wished J could have been there to talk to me or hold my hand.

Guided by the ultrasound and the directions of the professor, she jabbed me several times. I didn’t count – more than one, less than five, I guess. The two doctors were talking about the sentinel node; she had never seen an axial lymph node biopsy before. “Do you want me to do it,” the professor asked. He gloved up.

“Do you want a new needle?” “No, just wipe that one down with alcohol.” I was pretty much appalled at that and wanted to say something, but I was also paralyzed and speechless with anxiety. If J were here, she’d tell them to change it, I thought.

“We can’t give you local anesthetic for the lymph nodes, but you won’t feel much.” I felt the needle go in, and I felt it moving around inside of me, and then I felt something warm pouring down my side and back. Have they warmed the antiseptic, I wondered. What a weird sort of consideration from that guy. Then he spoke. “Don’t panic at the massive bleeding.”

Massive bleeding??? “I… I’m not panicking.” “I wasn’t talking to you.” And he said something I couldn’t hear to his young colleague.

Finally, it was over and a bulky dressing was applied. I was sent out to wait in the corridor for half an hour, to be sure I didn’t bleed any more. I sat down next to J and was grateful for her presence. I remember chattering at her, but I don’t remember what I said. A nurse walked by and told us to check the dressing for bleeding and if it was dry I could go. I got J to go to the restroom with me and asked her to check it. It was dry and we left.

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(1) Fine needle aspiration biopsy illustration at healthcentral.com.

Next: You have cancer.