Pain, Pain and More Pain After Double Mastectomy

Pain After Double Mastectomy

It’s time to post about the surgical pain from the mastectomy  (i.e., double booby amputation!) and reconstruction. I say that “it’s time” because now, a full 19 days post-op, I feel as if I have a little bit (little being the operative word here) of a handle on this issue.  Pathetic.  Absolutely pathetic.

Pathetic because while surgery is physically challenging, the key to an efficient, expedient and healthy recovery is aggressive pain management. When I say aggressive management, I mean 1000%  focus with unwavering tenacity.

Suffice it to say that my pain management has been abhorrent. Beyond description bad. The worst imaginable.

Why you ask?  I have NO IDEA.  I took every single precaution to ensure proper pain management. I talked with every single physician I met with and discussed the importance-the PRIORITY-of pain management post amputation and reconstruction. I told every doctor EXACTLY what kind of pain medicine I wanted and when.

As I was being wheeled into surgery, I literally told the man mopping the floor exactly what I wanted for my pain management.  He looked at me like a total whackadoo!

(On a side note, two years ago, I had spinal meningitis – another ridiculous story. However, I had to take a variety of different pain management medications to get the right pain relief. Therefore, I KNOW what pain medications work for me.)

“Nurses on the floor are trained in pain management,” I was told by one physician. NO THEY ARE NOT, I said firmly.

I KNOW about inadequate pain management training because this used to be my job which is why I am telling you exactly what I want and when, I said.

Tons and tons of academic studies demonstrate the failure of clinicians to evaluate or appreciate the severity of pain resulting in inaccurate pain control. Studies further demonstrate a lack of common language to describe pain, lack of commitment to pain management as a priority and failure to use adequate and/or appropriate medication. All of these studies, books and anything else related to this topic are organized alphabetically in my library, but pain precludes me from having the energy to list them, so you’ll just have to trust me.

Pain is BAD. BAD. BAD. Pain interrupts sleep. Pain decreases mobility. Pain decreases endurance and energy.  Pain strains resources by producing such symptoms as fatigue, depression, constipation.  Pain can also impair the immune response – and your ability to get BETTER.  Unrelieved pain may cause permanent damage to the nervous system. Pain is BAD. REALLY BAD.

Let me give you a little background on (part of) my professional life.  For the past 10+ years, I have been a hospice nurse. This profession has been an honor and a gift to my life (and has given me a tremendous amount of perspective on this FBC experience – because I know that things, no matter how dire they may seem, can ALWAYS be worse).

For the last seven glorious years, I had the honor and privilege of working as an educator with ELNEC (The End-of-Life Nursing Education Consortium), based at the City of Hope National Medical Center.

http://www.aacn.nche.edu/elnec/

My area of focus has been pediatrics.  Yes, dying children.  For whatever reason, I have been given a gift which is the capacity to be able to work with children who are dying or children of adults who are dying.

Totally diverting from the topic at hand (pain) for a minute, try for just a second imagining being at a cocktail party and someone asking what I do for work.  interested in continuing a conversation (which is 99% of the time!), I would say that I am a pediatric nurse.  That response would usually evoke an “Awwww, that’s so sweet.”

If not so interested in continuing a conversation (about 1% of the time, but when that happens it is a STRONG reaction!), I would say that (truthfully) I am a pediatric hospice nurse  & that means that I work with dying children. That person would slowly, or sometimes quickly, make an about face and run in the opposite direction.

Anyway, back to how my professional nursing experience is involved in my current post-surgical experience. Virtually nothing positive can happen (relationship interaction, activities of daily living, quality of life activities, etc.) until physical pain is managed. Therefore, addressing and solving pain issues is the very first place to begin when working with a patient.

Needless pain is a tragedy when good research (more references in my office) has taught so much about the nature of pain and the role of analgesics (pain medicine) and other therapeutic modalities in its management. Appropriate medications and supportive therapy can see to it that pain need not fill the every waking moment of consciousness…which has been the case me for 16 brutal days.

Below is a Quality of LIfe model developed by my brilliant nurse colleague, Dr. Betty Ferrell at the City of Hope.  This model describes the impact that pain has on all aspects of life (if you click on it, you will be able to see an enlarged version).

City of Hope Pain-Quality of Life model.

This Model resplendently demonstrates how profoundly pain has the capacity to impact every aspect of life.

Below, I am utilizing the model above to share with you how my pain has impacted (or inhibited) my healing process.  I’m doing this because I would like for you to be able to recognize the impact of pain in yourself or your loved ones.

Impact of Pain on: Physical Well Being & Symptoms:

  • Functional Ability – I can brush my teeth by myself!  …and if it’s a good day, I can take some photographs of beautiful flowers and our 4 3/4 daughter. That’s just about it for right now. On Thanksgiving, however, we went to a friend’s home for about 45 minutes. Not only did I feel like I could barely put three words together, but I came home and had to sleep for almost 2 hours. The visit did, however, fill me with love, light and ocean air.
  • Strength/Fatigue – Zero Strength. Incessant Fatigue
  • Sleep & Rest – Constant need for sleep. Not in the least bit rested.
  • Appetite – None…which is a total F-bomb.  Appetite is exactly what I need now because I have to prepare my body for upcoming chemotherapy.
  • Constipation – Oh dear friends, I can’t even begin to tell you the extent to which this topic has tapped my brain and my bowels. BRUTAL! BRUTAL! BRUTAL! By the way, when you are on pain meds, you must take colace AND senekot.  Why?  Well, because one is a stool softener (colace) and one is a stool mover (senekot).  You need BOTH to get things moving.  For some uninformed reason, hospitals consistently only prescribe colace. Inane. Someone has to tell you the truth…might as well be me!

Impact of Pain on:Psychological Well Being

  • Anxiety - TONS (but not the freak-out obsessive kind). Just general anxiety because I am at the point now of wondering how long this will last. Will it end?  (Yes, cognitively, I know it will end, but the longer one has pain, the longer she thinks it will never go away.) Oh, and pain in and of itself produces anxiety. Sometimes I really think I’m going to lose every F-bomb marble.
  • Depression - I am really, really sad. I’m doing my best at conquering my mind over matter; however, my brain doesn’t work all that well right now, which produces quite the conundrum.  There are days (like today) when I am just profoundly sad because I hurt so much.
  • Enjoyment – My enjoyment comes from finding SL’s (Silver Linings)…which, by the way, are everywhere when you look for them (and trust me, I am looking!!!)  I thoroughly enjoy visits with friends. And laughter.  Laughter is the best F-bomb antidote to pain!  For sure!
  • Pain Distress – Uh…Yeaaaaaaah.  Especially in the hospital when I went for 8+ hours without ANY pain medicine post surgery.  I’m not F-bomb kidding.
  • Happiness - Happiness and Enjoyment both come from looking for and finding SL’s.  Looking everywhere, all the time, because when I find them, I am happy.
  • Fear -Pain causes fear.  FBC (F-bomb Breast Cancer) does not evoke fear in me.  I’m simply not afraid of it.  Having pain literally causes fear.
  • Cognition/Attention – Huh? What?  I forgot what we’re talking about.

Impact of Pain on:Social Well Being

  • Caregiver Burden – I am absolutely beyond words grateful for The Husband. Unimaginably thankful. Profoundly appreciative.  How many words and ways are there to describe this gratitude? I am also so sad for what I am putting him through. I just am. Every single night (EVERY SINGLE NIGHT), he gets up in the middle of the night to give me pain medicine. 3:00 am:  “Honey, here is your medicine.  Let me lift your head for you to drink your water.  Good night. I love you.”  He props my pillows.  He tells me he loves me (ALL THE TIME!). He showers me. When he washes my hair (and my eyes are closed), he kisses my forehead. His capacity for caregiving is beyond my wildest imagination and I am filled with the deepest sense of awe, love and gratitude.
  • Affection/Sexual Function – Well, I’m all about “Monster 4 3/4 leg hugs” (which I LOVE).  Sexual function? REALLY? WTF? (NO pun intended!)
  • Appearance – Oh come on now. Geez-Louise.  Well, SL: Two girlfriends have given me the cutest jammies imaginable.  Between that and avoiding every mirror, I’m hanging in there.

Impact of Pain on:Spiritual Well Being

  • Suffering – Got it.  Plenty of it. However, I am fighting it with every cell in my body. For me, suffering is prevented by looking outdoors at the beautiful mountains or the magnificent ocean.  It is prevented by reading daily reflections in a wonderful book called “The Book of Awakening” by Mark Nepo (given so thoughtfully to me by a friend).
  • Meaning of Pain – I told a friend today that for me it’s not about asking why or looking back.  Now is the time to ask where to go and to humbly ask for guidance on getting there.
  • Religiosity - My religiosity is coming from 4 3/4.  We say our prayers of gratitude and hope every day, sometimes multiple times in a day.  How great of a SL is that?
  • Transcendence - I have always come from a philosophical acceptance that the universe gives us exactly what we need, exactly when we need it. It’s just how I roll. So, while this circumstance wouldn’t be my vision of the ideal situation, I know that for reasons yet to be revealed, I am exactly where I need to be. (It is still FBC, though!)

My final note about pain has to deal with reasons the people avoid pain medication. I know so many people who have a fear of taking pain medicine.  These fears are some of the biggest barriers to taking pain medicine or engaging in other pain relieving modalities. “I’m so afraid of getting hooked,” they say.  “Pain medicine will make me loopy,” they anticipate.

Let me take this opportunity to describe the difference between Addiction, Physical Dependence and Tolerance (ELNEC Curriculum, 2009, website listed above).

  • Addiction is a primary, chronic disease of brain reward, motivation, memory and related circuitry. It has genetic, psychosocial, and environmental factors influencing its development and manifestations. Addiction is characterized by behaviors that include one or more of the following:
  1. Impaired control over drug use
  2. Compulsive use
  3. Continued use despite harm, and craving
  4. People with true addiction disorders often follow a progressive self destructive spiral out of control that frequently involves loss of job, loss of relationships, financial and legal difficulties, and escalating physical and psychiatric health issues.
  • Tolerance is a state of adaptation in which exposure to a drug over time includes changes that result in a decrease in one or more of the drug’s effects. In other words, a patient’s reaction to a drug decreases so that larger doses re required to achieve the same effect. Drug tolerance is REVERSIBLE.  Drug tolerance is NOT addiction.
  • Physical dependence is a state of adaptation in which abruptly stopping a drug, rapidly reducing the dose, changes in metabolism and/or excretion that quickly decrease in the blood levels of a drug, or administering an antagonist (e.g., Narcan) causes a specific withdrawal syndrome.  This withdrawal syndrome is normal and predictable  Physical withdrawal can be avoided by systematically and slowly lowering the dose of the opioid over time such that the blood level slowly decreases. Treatment for physical dependence depends upon the drug being withdrawn and often includes administration of another drug. Your healthcare team will manage a patients reduction and ultimate elimination of pain medication in a safe and healthful way.

So if you’ve managed to make it through this entire post, you may wonder WTF?  Why is she still in pain?  Great F-bomb question.  We are taking this topic day-by-day, hour-by-hour, minute-by-minute.

Pain management is not an exact science. Doctors and nurses have different levels of training, understanding and awareness on this very complex topic, including the what, when, why and how of pain assessment and management.

As a patient, I am balancing the need to be free from pain with my desire for physical, psychological, social and spiritual well-being.  (Plus, I sure would like to relieve this constipation!!!)

Could I take more meds and be free from this constant pain?  Yes, but at what cost? That is the illusive balance I find myself facing 19 days post-amputation and reconstruction.

Next week, when we meet with my current and future doctors, it will continue to be the topic of conversation.

Wishing you all a wonderful, SL-filled, pain-free day.

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Comments

  1. kathryn norris says

    Hi Hollye, I became aware of your site through our mutual friend Maili. I applaud you and your beautiful blog and am particularly interested in your pain management comments. My husband and I both have had surgeries resulting in incredible pain. We, like countless others, wonder how this can happen in today's world of medicine which has access to terrific pain meds. I find it greatly ironic that doctors seem to be uneducated or unaware of the power of pain. We found one surgeon who seemed more interested in his "work" that our circumstance. His comment to me in a middle-of-the-night phone call regarding my husband post surgery was "He'll be fine." I said "Yes, of course he WILL be fine, but he is NOT fine NOW!" I boiled over that for days, even now!
    I do hope your professional position and personal experience can afford you the opportunity to make a change for all who have and will suffer from post procedure pain. It is a "painfully" serious gap in medical care today.
    I recall the movie "The Doctor" starring William Hurt. He, the doctor, gets sick and must endure the experience of being the patient . A rather eye-opening experience for him. Wish all docs could experience what they are trained to treat.

    • says

      Dear Kathryn,
      Thank you so much for your thoughtful note. I am indeed using my platform as a way to educate about the importance of pain (& symptom) management. Doctors and nurses are not educated and trained enough in pain management. There is a severe deficit. The Silver Lining is that hospitals are now required to have palliative care teams. These specialists are the experts in pain management.
      Many thanks for your note.
      All my best wishes for health!
      Hollye

  2. says

    Hi there. In my first comment to you, I didn't realize that you'd already had a bilateral mastectomy as I hadn't read the back pages of your blog yet. I'm just reading this today, and I applaud your very passionate blog about pain management. I totally agree. My bilateral mastectomy was in November after 5 1/2 months of chemo and it was WORSE than the chemo. The pain is so unusual (all that pulling and tightness) and almost constant and I don't think any of the doctors have a clue what it must feel like. So thanks for allowing me to recognize that I'm not a wuss. I still have pain now, when I over do it, and it's been almost 5 months. Love your writing style. XO Claudia

  3. Thomas says

    I second Caroline Diani's YOU ARE SIMPLY THE STRONGEST, MOST VIBRANT AND BRILLIANTLY INTELLIGENT WOMAN. So, the only pain question left unanswered is what should be prescribed for those jones'n in pain from miss'n you… you are my prescription for making a grey sky bright….and ironically still are as I read your inspiring reflections…girl, even when you are down you are still giving it up!

    I ordered my When Someone You Love has Cancer book. Is it required that I read while on the potty?

    Love you to pieces…

  4. Caroline Diani says

    Jeepers Hollye! You are simply the strongest, most vibrant and brilliantly intelligent woman I think I know.
    I'm sending you love and laughter filled days with NO MORE PAIN!!

    Lots of love and hugs,

    Caroline xoxo

  5. Mary Beth says

    Dear Hollye,
    You have such an articulate voice in describing the pain, the pain, that monstrous all consuming pain that has the potential to completely control one…..and yet, it does not control you. I cannot emphasize how you are teaching brilliantly as you blog. Thank you!
    Xoxo
    MB

  6. diane says

    I forgot to say that I TOTALLY relate to your questioning the amount of drugs to what price? To me, the constipation was one of the worst things I experienced after coming home from the hospital. I could not wait to get off the Norco.
    Also, imagine all the food in the world, all the things you love to eat, even things you might have taken out of your diet…whatever it is, if you have a little craving, get that food and chow down! I had such anxiety post-surgery, I lost weight before starting chemo and then of course lost more, so try to pack on a couple pounds before you start. I know its hard…I avoided mirrors for months which was difficult since in my dressing area I have a HUGE one leaning against the wall!!!
    Another suggestion, I had a hard time concentrating when trying to read so I watched TCM constantly. Stock up on movies just in case! Old black and whites are great, you can get carried away with the interiors and fabulous gowns!
    Miss you and think about you all the time
    xo Diane

  7. diane says

    Oh Hollye,
    Having half a lung removed was a piece of cake compared to what you're going through….I cried reading about "The Husband", he and 4 3/4 are the biggest SLs I can imagine. You are so articulate and I agree with everyone that this blog is a best-seller…you are inspirational and express this journey brilliantly.
    However, I do take exception about the "princess dress"….Oscar???? Really????
    Much love,
    Diane

  8. ginny simon says

    Dear Hollye,
    How incredible you are to teach and supply wisdom as you suffer so. You show such strength, poise and grace through every sentence. Thank you for allowing us into your
    struggle, I know I just want to love you and protect you. Only wish it were possible.
    Always with love,
    Ginny

  9. Amy says

    Hollye – Just read the post. I'm so sorry. I don't know what else to say — of course wtf comes to mind. I just don't understand. . . .

  10. Laura McGrew says

    Good morning Hollye,
    I just finished reading 'Pain, pain, and more pain' and I am wondering if educating your readers is an SL for you. I certainly hope so because that is exactly what you are doing. I will be sharing this essay with a friend [of course I will delete personal details.] I also wonder if perhaps it is in this arena that you may become an educator for professionals. They may listen to you more carefully because of your background than the salesman, housewife, or teacher whose complaints about pain levels get brushed off.
    Lastly, I am so very sorry that the pain continues for you. Know you are in my thoughts and prayers.
    Love,
    Laura

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