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.
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).
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:
- Impaired control over drug use
- Compulsive use
- Continued use despite harm, and craving
- 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.