The Whole Chronic Thing

When I was first diagnosed with metastatic breast cancer, I wanted a second opinion.  It wasn’t that I thought another physician would tell me that I was fine, I just wanted to hear another take on the whole thing.

So it was that I met George Raptis.  He was wonderful.  He bolstered the findings of my first medical oncologist and praised her to some extent, for given my presentation of symptoms and history he would not have chosen to perform the PET/CT scan that revealed my metastatic disease.  And that is when I first remember hearing the description of stage iv cancer as a chronic disease.  He told me the mean survival rates (2.5 to 3 years) and then went on to say that many women live with metastatic disease well in excess of five years.  And, to that end, my cancer would be treated like a chronic disease.

When Dr. Raptis left for greener pastures and I met my new oncologist, she also used the description of chronic disease quite a lot.  So, too, did the dozens of women who attended the Living Beyond Breast Cancer conference for women with metastatic disease.  The words just floated in my mind and never really settled anywhere.  It was just a phrase.  Just a beige description that made no impact.  Until just a few weeks ago.

My favorite knitting nurse (you know who you are!) was preparing my monthly shot of Xgeva and my quarterly Lupron shot (the arrows in her quiver are painless).  I have no memory of the specifics of our conversation, but I recall that as I bared my left cheek for the Lupron jab she said “after all, you have a chronic disease.”  And the phrase finally settled.

It didn’t just settle.   It grew barbs and dug in.

Chronic disease.

I mulled it over and over, the phrase tumbled in the cement mixer.  The whole walk to the bus and the ride home was dominated by the thought.  I don’t have a yeast infection, I thought.  I have cancer!  I didn’t like the phrase and started to take umbrage that people say it so casually.  I had said it that way, after all.  It’s how I described it to my family: no, I will never be free of cancer; I have a chronic disease.  The thing is, telling my family that I have a chronic disease made me socially acceptable.  It didn’t sound so bad after all.

Further, chronic disease makes this all so unbelievably doable on an emotional level.  “I have a chronic disease.”  It sounds so much better than “I walk around with a palpable cancerous tumor in my right breast.”  I quite literally feel an honest-to-goodness difference when I verbally say “I have cancer” as opposed to “I have a chronic disease.”  Indeed, I need to consciously force myself to say them identically, otherwise the final syllable in disease takes a little upturn in tone.

I know that if you take the time to look up the meaning of chronic it becomes clear that how ever I may feel about the word, its use is completely valid.

chronicFurther, consider the company we keep under the rubric chronic disease: Parkinson’s, ulcerative colitis, diabetes, epilepsy, and HIV–to mention but a handful of individual Hells.  It’s just that in my mind, the phrase chronic disease describes the endless character of any disease in a way that makes it more socially and emotionally acceptable than these diseases are on their faces.  It’s complicated because folks with chronic disease are often seen as the cause of their own circumstance and are often under diagnosed and under treated.   In a very real sense I want to own the word cancer.  (See Laurie Edwards’ book In the Kingdom of the Sick for a lengthy and informative discussion of chronic illness in an age where we are accustomed to being cured of disease.  I reviewed the book in an earlier post.)

I do my routine: Letrozole in the evening, Lupron quarterly, and  Xgeva monthly.  PET/CTs quarterly–though this will soon move to bone scans and non-PET CTs.  I drag my sorry ass to the medical oncologist every month.  I’m sure as hell not doing this because of my chronic asthma.  No, this is different. I have to make sure this thing stays in check and doesn’t start spreading to more bone or other organs.  And, for me, that needs to be called cancer at all times.  I am managing my disease, i.e., cancer.

I made it one year with MBC, but I see so many women with stage iv disease in worse shape than me.  It brings on a guilt that seems ludicrous, but exists notwithstanding all the reasons why it shouldn’t. I mean, if you have completely run out of options it’s not chronic anymore, is it?  It’s the end.  It rips my heart out.  We just lost Cindy Rose Phillips and Donna Peach, and Lisa Lynch among others.  And so many more of our friends are fighting for their very lives right now.

No, suddenly I don’t like the words at all.  Chronic disease somehow masks what is really going on.  For good or ill, I have breast cancer.  Stage IV breast cancer.  And, you know, that’s okay.  I just want to call it what it is in its starkest terms.  I want to take ownership of that word: cancer.  Chronic disease is just too good for it, considering the real hell that it is for so many men and women.  Considering the real hell that it has been for me.

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34 Responses to The Whole Chronic Thing

  1. Man. Your posts are outstanding. You know, the “chronic disease” thing strikes a chord with me, too, but in different ways (obvi). I have a brain tumor, but my doctors don’t seem to mention it much. Maybe it’s because we’re playing “GET IN FRONT OF THE CANCER BEFORE IT COMES CARD” with me and they are too busy, baha. But, regardless, I don’t have a chronic condition. Cowden’s Syndrome, SURE, is chronic because it’s A GENETIC condition, but I have a brain tumor (LDD) and a genetic mutation that causes cancer. Call it what it is. Boom.

    So glad I have found your blog.

    • Scorchy says:

      Heather, I am so glad you found my blog and took the time to write a response. It’s all about the context. I know for me, I prefer to have it called what it is. xoxo

  2. Pat Wetzel says:

    Scorchy,

    I always love your blog, and this one has really caused me to pause (Obviously it’s led me to post again!)

    “Chronic” seems to be a way of minimizing and not honoring the incredible emotion of the cancer experience. The word suggests boredom; repetitiveness; non-threatening.

    So I’d like to pose a series of questions for the group: What other “chronic disease”…

    Makes you so aware of the magic of life?
    Stops conversation?
    Puts one through an emotional roller coaster of hope and despair?
    Subjects one to toxic drugs in an effort to heal?
    Makes planning for the future so difficult?
    Has side effects that may last years after treatment?
    So touches society that it rallies millions of people around colored ribbons? (Let’s not go deep on this one for the moment. )
    Has 6 letters with endless permutations that turn your life on a dime?

    Call it cancer and honor the journey. If it’s difficult for the medical community to deal with the reality head on, imagine what it’s like for the patient.

  3. keithw says:

    A few days after P’s surgery on her back disclosed that it was a breast cancer eating her L3, we (I am always with her; she’s the light and love and everything in my life – beyond being scared as hell, I owe her my support and want to be there, wherever the hell “there” leads) heard her first onco say that it was chronic and that with medicine she would live a “long and happy life”. He glossed over the term Stage IV. Thanks Doc, needed to learn about that all on our own here; and as a math guy I needed to have to see the survival rates, and know my love was just as capable of finding the truth too.

    “Chronic” is a copout for those dealing the bad news. I do have asthma, that’s CHRONIC – chronic is not what you are facing, not what my love is facing.

    In the movie the Watchmen, there’s this exchange:

    Edgar Jacobi: I have cancer.
    Rorschach: What kind of cancer?
    Edgar Jacobi: Well, you know the kind you eventually get better from?
    Rorschach: Yes.
    Edgar Jacobi: Well, that ain’t the kind I got

    People keep wanting to pinkwash or put band-aids on, or do anything, but try and make Stage IV extinct. It tires me not screaming sometimes Scorchy. Please keep speaking out.

    • Scorchy says:

      Yes. That “long and happy life” thing does happen, but is so very rare that for docs to say it is unfair and offers denial when one really wants guidance and care. I do love the exchange in Watchmen. Love it!

  4. Lori says:

    My dear, dear Scorch! You always put it right out there! And I completely agree that using “chronic” diminishes the punch that should be part and parcel with cancer. However, I also understand sticking to the actual definition of the word chronic, and I can accept it from that point of view (much as I can accept the label “survivor” since all we have to survive is the “you’ve got cancer” conversation in my view). I think our lack of language here is about our societal discomfort with aging, illness and mortality, and I wonder if cultures who see these as part of the spectrum of life have more appropriate language…

  5. juneaubugg says:

    Right on Scorchy…. It’s society that needs to label it something more user friendly… Like having a “mastectomy” is anything less then an “amputation”. I couldn’t agree more…

  6. bethgainer says:

    Scorchy, bravo for writing this insightful post. You are 100 percent right about the language of mets. I agree with the above-mentioned comments. Calling metastatic breast cancer — or any metastatic cancer for that matter — a chronic disease minimizes the importance of the actual disease. It is NOT a chronic disease. Thank you for your candor and for writing this post.

  7. tw says:

    I never regarded losing my Mother or Aunt as losses to a chronic disease. They died of cancer, that’s all there was to it. People get chronic acne, chronic ear infections and chronic headaches but rarely die of those. I agree with you Scorchy, labelling cancer underplays its true nature. It just offers up a socially acceptable term so people avoid the conversation so many are unwilling to face. The truth is cancer kills and until there’s a cure we must never let social niceties stifle the facts.

  8. Catherine says:

    Oh yeah, I am with you. From the moment that term was applied to me it didn’t sit right. I reckon that is because chronic suggests difficult but liveable… The stats and stories around Mets do not sound chronic, they sound tragic. Somehow I feel like the word chronic is just another way of making this okay for other people.

  9. dear Scorchy,

    when Hugh was first diagnosed with multiple myeloma, I remember the first time his MM specialist referred to it as now being a chronic disease. I recall feeling somewhat comforted by that remark – my husband wasn’t going to fall into the stats that predicted such dire survival rates – he would live many more years, have his tandem stem cell transplants, recover, then take medications to address any recurrence – referred to in the big pharma, as well as medical research journals, as “novel agents”. something rankled me about the constant approval and upbeat reporting that always came back to chronic disease. and we just kept losing so many of our MM friends, many who had been treated with the newest, latest and still succumbed to that wretched scourge.

    it was not unitl I was dx’d with ST IV metastatic BC, then heard the same touting of the “progress” of it being a chronic disease, that I realized that there was so little being done to promote the concept of “cure” or “prevention” or promising research for both our illnesses – but there was still the same old, tired, hit or miss regimens of treatment for recurrences. which led me back to what that niggling thought about big pharma’s relentless pumping out of novel agents. the horrifying question that had simmered and stewed since hugh’s diagnosis was:

    if a disease gets relegated to being “chronic”, does that mean that the emphasis on research for prevention, cures, whys, and hows of diseases develop, manifest, and progress is less urgent?

    that thought, that question scared the shit out of me – we both had ST IV “chronic diseases!”. and I knew then that it was some sort of protective mechanism that would not allow my brain to fully form that question way back in the beginning when Hugh was diagnosed, 2 years before my own diagnosis – I wanted the promise of the experts who assured Hugh and I that there would always be a new drug right around the corner to provide an effective intervention for recurrence. I simply wanted my beloved husband to LIVE. ironically, hugh died 7 months ago, almost exactly within those dire survival predictions – while in a supposed full, robust remission. (stem cell transplants have a nasty tendency to making patients prone to a secondary cancer – it’s believed that Hugh had a very small brain tumor – in a very lethal location- before it ever manifested with signs and symptoms.)

    there is something in me that will forever completely reject the notion of ANY cancer being labeled a chronic disease. and it makes me physically ill to think of all the resources poured into developing more and more drugs to stave off the ravages of ST IV recurrences that could have, should be spent on research for the Real Deal. words matter. and they produce actionable results. it leaves a bitter and most frightening question as to what is to be gained, and what might be lost in re-labeling a disease known to kill, now CHRONIC.

    I am with you, Scorchy – I do not want to be in the box of “chronic” – I might not live long enough to see any real progress towards annihilating my cancer(s), but i’ll be damned if I jump on the chronic bandwagon and settle for it being any less than what it is – CANCER. and I, too, wonder if back in the beginning of treatment for BC, we called mastectomies by their rightful name, “breast amputations” instead of settling for a more palatable word, how much further advanced we would be in the game of determination to wipe out the need for them. (your past post on this issue was incredibly enlightening.) thank you for writing about this issue, for your honesty and for hopefully challenging the medical community in this seemingly skewed approach to soften the blow of ST IV disease.

    much love and light to you, my friend,

    Karen XOXO

    • Scorchy says:

      Lately, just over the last two or three days, I have begun to feel as if I won’t get past the five year mark. Not sure why I feel this way, but I do. And it is this feeling, I think, that led me to the dislike of this strange land known as :Chronic Disease.”

      It plays tricks on us. I hadn’t thought much about the words covering for the surreptitious activity of keeping a disease “chronic” so companies could make more money. Some would say that’s cynical–I would say that it is truthful. There are a lot of fat cats out there who think like this (apologies to my felines),

      I feel so sad when I think of Hugh. You were his rock, I’m sure. Where is your rock now? Oh everything about this disease gets to me. Everything.

      I’m glad we have one another.
      xoxo

  10. Elizabeth J. says:

    I totally agree. My oncologist calls it a chronic disease. He even compared it to diabetes. Yet, I have friends who have had diabetes for many years. They do not expect to actually die of diabetes itself. Perhaps from secondary health problems that develop over many years of being diabetic. They expect to see grandchildren grow up. They feel BETTER when they take their meds!
    In contrast, I will most likely die of metastatic BC. I know my lifespan will be considerably shortened. I will be fortunate if I see my infant grandson start kindergarten. And the side effects of my meds give me hot flashes, a great deal of aching, insomnia, fatigue, etc.
    Maybe the problem is they keep us alive too long to keep calling it terminal, but don’t really have a better term than chronic. But to most of us nonmedical people, we think chronic is asthma, arthritis, diabetes, epilepsy, not something that will probably kill us less than 10 years from now.
    By the way, I agree with the term breast amputation. When people today think mastectomy, they often think of skin-sparing surgeries where the woman wakes up “reconstructed.” I even heard a “breast surgeon” interviewed (quotes because I really wondered) who talked about the skin-sparing and how most women can chose immediate reconstruction (really – tell that to all of us who were told we had to wait until after radiation) and this was the kicker, “nobody gets radical mastectomies anymore.” (I replayed the interview twice as I did not believe I heard it right.) Technically, she was right, it is now modified radical mastectomies. But, she never once mentioned them. Never once mentioned lymph node removal. Only skin-sparing with reconstruction. Not even a mention that even in those cases reconstruction is a long multistep process. Many of my friends were actually shocked that I would not wake up after surgery with a reconstructed breast in place! So maybe it is time to make people realize what mastectomy really is.

    • Scorchy says:

      Like diabetes. Isn’t that rich? I hear what you’re saying. Diabetes is its own Hell, to be sure. But it’s not breast cancer, man. Though, I have a friend with diabetes and she is having such a hard time now that she’s older. Still, it’s not a game of one over the other, it’s still not cancer.

      As for amputations, I wrote post about language (amputation vs mastectomy). The film that accompanies it leaves no question about what it really is–whether it was 1930 or 2013. http://wp.me/s2CLwB-language

      Back in the day I used to think that women woke up with new boobs in place. All was well! Cancer out, good boob in. Cured! Boy, do I know different today.

  11. Scorchy, You ROCK as always…chronic disease is so much better all around ~ although NO DISEASE would be the Best Scenario. My HEARTfelt hugs to you xo

  12. Hi Scorchy,
    Words matter so much don’t they? There is this tendency in Cancer Land to constantly attempt to lighten things up or gloss over stuff. While I get that, it’s way too often a dis-service to the cancer patients themselves. Sometimes I think there is more concern for the non-cancer people. Hard to explain… I agree with Kathi about the mastectomy vs. amputation word choice. Yet another attempt to lighten up an almost still barbaric procedure… I’ve never really liked the term chronic disease either in regard to mets. Your post is perfectly written. You nailed it. Thank you.

  13. Pat Wetzel says:

    Why do people disengage when you say “CANCER”? They look away; want to change the subject; mutter the usual nonsense “You look so good!”. What is so difficult about a bit of compassion or care? But neither are part of our societal make up anymore. We care about superficial things. Using the right word. Wearing the right whatever. Featureless, wrinkle-less facades. “Chronic Disease”–no worries here! (/sarc)

    By the way Scorchy, I love the snowflakes! Great post!

    • Scorchy says:

      Yeah. I guess before I got the cancer I used to look away too. I felt weird and embarrassed that I mentioned it. And now I’m on the other side and know first-hand that you won’t break, get the vapors, or otherwise die if someone says “cancer.” It’s up to us to break down the wall. Snowflakes and all (a nice little WordPress thing they do every year until Jan 4.). xoxo

  14. Tomi Morris says:

    Years and years ago, my aunt suffered from chronic leukemia ( the 70’s, early-mid 80’s). The words made it sound like it wasn’t really leukemia. It wasn’t that thing you died from. It was just there. Well, she did die of leukemia eventually (honestly, I don’t remember how long her leukemia journey was) and in our heads, she died “because it turned to real leukemia.” This blog is so spot on for me. Reading through it, all I could think of was my aunt. The lightbulb just switched on. Thank you.

  15. The Accidental Amazon says:

    Scorchy, I couldn’t agree more. I don’t know if some kind of compromise phrase would help — like chronic cancer, as opposed to the generic ‘disease.’ As horrible as many of the chronic progressive diseases I see with my patients, stuff that does not get better, stuff that will eventually lead to death, things like Parkinson’s and COPD, these diseases don’t include the same potential time bomb of mets. Lumping metastatic cancer in with other ‘diseases’ just doesn’t quite cut it. Who is served by the chronic disease phrase? Does it make the clinicians feel better? I don’t know. It doesn’t make me feel any better, either as a patient or a clinician. There are so many inept and inapt medical phrases out there, though. For instance, I’ve always thought ‘mastectomies’ should be called breast amputations. And then there’s the phrase ‘cancer survivor.’ Don’t love these either.

    Thanks for writing about this. xo, Kathi

  16. Knot Telling says:

    Very interesting thoughts; I hope this is widely read by people with cancer and especially by the people around us. Our experience is so difficult to express; you do a wonderful job, Scorch. Hugs.

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