The day of the surgery arrived. I was told that the double mastectomy and reconstruction would likely take between five and seven hours. Yes, it's a doozie. For some reason people keep telling me that as a result of this surgery, my chest will be "as perky as my personality". Really? I'll take that as a Silver Lining (SL).
Before the Mack Truck (that was abhorrent pain management) hit me, I had some great news after the surgery:
1. My cancer is Stage II, caught early (SL). I would like to gently remind all of those folks who tried to make me feel better by saying "It's 'just' Stage II" that one should never, ever, ever put "just" before the word cancer. BAD idea!
2. I had one lymph node involved, which means that the cancer has metastasized (i.e., spread), but not as much as it could have (SL). This also means that I will have toughest of the tough chemo regimens (not so Silver).
3. The surgeons think that my wounds look great (SL).
Great news is great. However, now for the bad news: I had what was unimaginably horrendous pain management.
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 percent focus with unwavering tenacity.
Why was my pain management beyond description bad, you ask? I have NO IDEA. I took every single precaution to ensure proper pain management. With every physician I met, I discussed the importance -- my PRIORITY -- of pain management post mastectomy (i.e., a nice way of saying amputation) and reconstruction. I told everyone EXACTLY what kind of pain medicine I wanted. When I say everyone, I mean EVERYONE (e.g., doctors, nurses, phlebotomists). I told everyone just short of the valet guy ... actually, maybe I told him too.
Here's how the dialogue went:
"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.
On a side note, two years ago, I had spinal meningitis -- another ridiculous story. However, I had to take a variety of different pain medications to get the right pain relief. Therefore, I know which pain medications work for me and which ones don't.
Time and time again, 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. One size does not fit all.
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, and 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.
Needless pain is a tragedy when good research 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.
For the past 10+ years, I have been a hospice nurse. This profession has given me a tremendous amount of perspective on this FBC (F-Bomb Breast Cancer) experience -- because I know that things, no matter how dire they may seem, can always be worse.
In my professional experience, I have witnessed the fact that virtually nothing positive can happen (relationship interaction, activities of daily living, quality of life activities, healing etc.) until physical pain is managed. Therefore, addressing and solving pain issues is the very first place to begin when working with a patient.
Below is a Quality of Life Model developed by my brilliant nurse colleague, Dr. Betty Ferrell, at the City of Hope National Medical Center. This Model resplendently demonstrates how profoundly pain has the capacity to negatively impact every aspect of life.
I am utilizing this Model to share with you how my pain has impacted (or inhibited) my healing process (two full weeks post-op). 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 and 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 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 two hours. The visit did, however, fill me with love, light and ocean air.
• Strength/Fatigue -- Zero Strength. Incessant Fatigue.
• Sleep and 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 my, oh my, 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 very well right now, which produces quite the conundrum. There are days 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 my 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 care giving is beyond my wildest imagination and I am filled with the deepest sense of awe, love and gratitude.
• Affection/Sexual Function -- Sexual function? REALLY? WTF? (NO pun intended!)
• Appearance -- Oh come on now. Geez-Louise. Well, SL: Two girlfriends have given me the cutest jammies. 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 ameliorated 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.
• 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 ¾. 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!)
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. What I know for sure is that the medical profession may say they know pain, but YOU (or your loved one) need to figure what works best for you and then act upon it. Often it takes a lot of tenacious advocacy, but it is worth it!
Next week, I will discuss chemotherapy.
I believe that everything happens for a reason. People change so that you can learn to let go, things go wrong so that you appreciate them when they're right, you believe lies so you eventually learn to trust no one but yourself, and sometimes good things fall apart so better things can fall together.
- Marilyn Monroe
To read more about Hollye's holistic and humorous journey over, around, above and below breast cancer, please visit her blog, Brookside Buzz (www.brooksidebuzz.com). You may e-mail her at firstname.lastname@example.org.
Follow Hollye Harrington Jacobs on Twitter: www.twitter.com/hollyejacobs