Thursday, January 25, 2018

It's Just a Pain in the Neck, With a Side of PTS Terror

Once betrayed by our bodies like many of us feel after being diagnosed with cancer, every new ache can bring with it a level of fear. Some of us are better at dealing with that fear than others. I'm not in the better category.

Last April, I moved into my new home, my ocean oasis. That was the fourth move I'd made in 16 months. I guess I never learned those lessons about using one's legs to lift heavy things. Coupled with the fact that I'm on the petite side, measuring in at a mere 5 feet 2 inches, I really have no business doing heavy-lifting. Or dragging. Or pulling, pushing, shoving, forcing or whatever else constitutes physical heavy-lifting. Maybe I thought, because I am pretty decent at that emotional heavy-lifting, it somehow translated to the physical stuff, too.

Dumb move. Rookie mistake. Should have known better.

By early May, I was in serious pain. I couldn't pinpoint the pain. It was my clavicle, my back, my upper arm and it radiated right through my fingertips. It was severe. Like daggers shooting down my arm, I was convinced the breast cancer had taken up residence in my bone(s).

Turning like the pro that I am to every internet avenue, I began researching the possibility that lobular breast cancer might like spreading to the upper arm. None of this thinking was logical on any level, but it's what happens. It's what I do. Sadly, I think it's what many of us do.

The pain woke me at night. And if the pain didn't wake me, the moans would wake me instead. Sometimes, middle of the night moans and groans can be fun to wake to. A wild and vivid dream that I might try to coax into reality -- those are fun. What I was experiencing? Not one time was there a fabulous dream involved in any of this. It was just pain. And fear. Or more accurately, it was sheer, horrifying terror. Followed always by sleepless hours as my mind went down that path, you know, the it's back path, while my body was writhing in pain.

Only a handful of people knew what was going on and only one knew that the pain was excruciating. The suggestion that I must have this checked was met with two-word responses. "No way," "Not happening," or on those days when the pain got the best of me, it was a quick and loud, "Fuck That." I rationalized it. "Early detection of metastatic breast cancer has not been shown to change overall survival," I would proclaim, not even certain if this is still a clinically accurate statement. When I shared that thought with my one person, elaborating further that I'd prefer to have a bit more time of blissful ignorance rather than cross the line into metastatic disease, her two-word response was a surprise. "Fair enough."

I lived with the pain. I wasted my two emergency Percocet one night when the pain was unbearable. I finally convinced myself the heavy arm and what appeared to be a swollen right hand was lymphedema. I thought about calling the oncologist, but realized it was late on a Friday in advance of Memorial Day weekend. Instead, I called my mom who happened to have a monthly appointment with our oncologist. I let her hijack her own appointment on my behalf and within an hour, I was at in the office being evaluated. "Not lymphedema, not cording, probably a pinched nerve, here's the doctor you should see."

Once convinced it was not cancer that had spread to my bones, I made the appointment to see an orthopedic specialist. He had x-rays done while I was there, prescribed a medication that didn't work at all, and gave me the name of a physician in the office with whom I should follow up for pain management. Weeks later, awash in the calmness that my problem was not a cancerous spread, I was with the pain doctor. He manipulated my neck in every direction, prescribed a different medication, and discussed the need for an MRI.

And there it was. His voice began to sound like we were underwater. He was explaining that he doesn't give MRI results over the phone and absent a phone call, I should make no presumptions about the results of the MRI. I heard the word cancer and those dreaded words, "with your history..." and my brain was off to the races. I like this guy lots and in fairness, I'm sure he said he didn't think it was cancer but just hearing the word, for me, is like putting a war veteran back on a battlefield with the sound of explosives all around. I thanked him for letting me know he wouldn't be calling with results, recounting the number of people I've spoken with over the years who learned they had cancer via a phone call, including some who were behind the wheel of a car lucky they didn't cause a cataclysmic accident.

Already having stepped into the maze, I had to see this testing through. The insurance company approved the MRI immediately and I scheduled it, immediately. I needed answers and I needed them quickly. I had upped the ante by convincing myself it was "just lymphedema" as if that would be a walk in the park which, for the record, it isn't. Lymphedema can be, and often is quite debilitating.

I tried taking the gabapentin prescribed by the pain doctor but it was making me too groggy. I took precisely two pills. One in the afternoon, one in the evening and when I woke the following morning requiring four hours to get going, I tossed the bottle into a cabinet. The MRI was awful and it had nothing to do with being confined inside that tube. I kept my eyes closed despite my temptation to open them just once. Just once is all it takes for the claustrophobia to set in, but on this day, it was the pain. Lying still, flat on my back without any support for my neck caused the pain to be as severe as I'd ever experienced.

I dutifully returned for my follow-up. Little did the doctor know his plan of not giving results over the phone would be undermined by a patient portal. Score one for electronic medical records and automated processes. I saw the results days before my appointment. No Cancer! Armed with a report filled with all sorts of unfamiliar terminology, I was once again, trolling the internet for information, googling every word in the report. When I met with the doctor, his words were calming but he explained, quite emphatically, "Doing nothing isn't an option." He then asked about the gabapentin and I somewhat colorfully explained that I can't walk around like I'm stupid. He advised me to build up slowly with the pills and suggested a nerve block injection would be the best course of action. When he told me he did these injections without a sedative, I knew it was time to find a new doctor.

Stupid move.

I began taking the gabapentin and gradually built up to 5-6 capsules daily. Simultaneously, I began searching for a doctor who would just knock me out for this nerve block. The thought of someone sticking a needle in my neck? Not in a million years. For two months, I've been taking the gabapentin and today, I want to kick myself for letting this go on.

Last week, I went back to my guy. He did the nerve block. I was wide awake. I felt nothing. When I learned that I have to take every precaution to carefully and slowly taper off the gabapentin, I felt a whole lot. Aside from never, when did I blindly take any medication without doing my homework about possible side effects and the like? I've been off all prescribed medication for more than 8 months except for vitamin supplements and an anti-anxiety medication that I sometimes use if I have trouble sleeping. For ten years, I lived with a pill case. Cutting that cord was a cancer rite of passage.

And here I am, again. The weaning process, despite being on the medication for two short months, is going to be quite meticulous and quite lengthy. Tethered again to a pill bottle over my fear of an injection I didn't even feel?

Lesson learned. What lesson that was, I'm not really sure.

Must I learn to face fear squarely in the face? And if so, which fear - a cancer recurrence that pushed me to let this linger so long, or the terror of having a needle in my neck?

Or, reading before starting any new medication because some things are too dangerous to just stop taking?

Or, maybe it's acceptance that I'm not as young as my mind keeps telling me and its ok to ask for help rather than pretending “I got this,” in every single aspect of my life?

In the near term, the certain lesson is this process is going to be slow and steady. While slow and steady may win the race in fables and fairy tales, it's not really my style. For sure, the lesson upon which I would wager a substantial sum of money? Those aforementioned anti-anxiety meds? Until this chapter is wrapped up, they're not just for sleep disturbances anymore!

Note: I wrote this two months ago. I'm now fully weaned off the gabapentin and it knocked me on my ass for 48 hours each and every time I dropped one pill from my daily dose. I just had my follow up with the pain management doctor. I told him I still experience occasional numbness or tingling in the fingertips on my right hand. He told me I should be taking a low dose of gabapentin which was met with an icy stare and a quick, flip response, "Not happening, those pills are a bitch to stop." He told me he knew that which may have triggered another even icier glare in his direction followed by my question about other options. Apparently, we may be able to try another nerve block if the pain begins traveling down my shoulders, up my fingers and meeting somewhere around my elbow. However, it seems the optimal approach is the nerve block in conjunction with the gabapentin. Since that's not an option in my play book, it appears if this flares up again, I'm left with two lousy choices. Live with the pain or there will be yet another surgery in my future. As I can still feel that pain in my memory, I hope this remains in check or I'll be gowned up yet again, this time, having some form of surgery to figure out how to fix the three discs in my neck ... And so it goes ...

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  1. Been there - I had a pain in my hip and even my oncologist thought the cancer was back. Thankfully it was just bursitis and a shot did the truck, but it was scary as hell before the final diagnosis.
    Have you thought about trying a chiropractor? I used to think that was not an option until I met the one I go to now. A good chiropractor can perform miracles!

    1. I'm thinking I want to try an acupuncturist first. Because the discs in my neck are a *big BIG mess* - I'm afraid of letting anyone manipulate them!!! Fingers are tingling now. First time today... <3

  2. Be careful with chiropractic services. They have their place! Metastatic breast cancer had destroyed vertebrae C6 and C5 and C7 were on their way to destruction. I was getting adjustments for what had been diagnosed as a pinched nerve before the MBC diagnosis. I could have been paralyzed! I know your situation is different and I appreciate your candor!

    1. ^^^^^^ SO important. Thank you, anonymous! Those are the exact discs I am having an issue with. C5/6 pressing on a nerve root "signficantly" -- and C6/7 also pressing on its nerve root, just slightly less. When I began experiencing the pain, I couldn't even determine the pain source. That's why I did nothing for so long. Except live with the terror. And that's why I really thought something was happening in the bones where I thought the pain started. Every situation is different and proper evaluation is the single most important piece of information we should all have before making any decision about what avenue to pursue. They pushed for physical therapy. I do exercises every day but the discs are badly damaged and no amount of physical therapy is going to fix what looks like a big mess to my untrained eye. xo

  3. You are so right about some people dealing with "things" better than others. I injured my knee in September due to overuse and not enough stretching. The short version is I ended up in physical therapy that triggered tendinitis in my foot. The pain was excruciating and it has taken me four months to be (mostly) pain free. I never thought "cancer" but a dear friend whose mother died of MBC freaked out that I might have MBC because her mother had similar symptoms. Having been through BC and recurrence scares with myself, my mother, and a dear friend somehow I knew this was different. I'm so sorry all of this happened to you. If you ever need someone to "talk you off the ledge," give me a call.

    1. xoxoxo. Thanks so much, Heather. And this is why I treasure every single person whose life has intersected with mine. You're truly a gift.

  4. Awwww AnneMarie! *sigh* I'm so sorry this has happened to you. If it helps to know you have a "partner in crime" in me, consider ourselves as twins separated at birth. All the lifting... all the heave-ho-ing... all the "I'm strong like bull!" phrases we repeat in our heads... don't do our bodies much good, do they. But why didn't somebody tell us, right? I'm a nurse though. I should have known?!!

    In a big move 25 years ago I heave-ho'd myself into a dropped pelvic floor with a resultant hysterectomy. But did I learn? Why of course not. :-/ Two years ago I tried to pick up the end of a piano (oh yes, heave-ho'd like a moose!!) and cracked my L-1 vertebrae clear through in 3 places and bulged the disc between L-4 & L-5. It felt like a bungee cord being pulled in my back, which then broke, and then my spine shifted. I thought I severed my spinal cord and was jubilant when I still had feeling in my legs afterward. The broken back was the most painful thing I have ever experienced in my life... but I didn't realize that major body trauma can cause Type II diabetes!! :-O Yep! My endocrine system went into shock, my pancreas was stunned, and my blood sugar was 350 seemingly overnight, after 10 years of previous yearly check-ups showing normalcy.

    My back is healed but the pancreas isn't... so diabetes (& all the "fun" that comes with the disease) is a part of my life now until my life ceases on this earth. Just one more reason to NOT lift heavy things as we age. I have lifted all of my life, never having had a backache... ever. I guess I didn't realize that 60 year old bones aren't quite as resilient or tough as they used to be. Apparently pancreas aren't either.

    Be well, dear heart. You're right, we're not as young as we used to be... but isn't that a glorious & privledged thing! XOXO

    1. AYEEEEEE... this sounds completely and totally AWFUL. But, in the spirit of everything near and dear to my, your hopeful words at the end resonate. It is a glorious and privileged thing to be here, to have a voice and to keep using it! Much love, Andrea. xoxo

  5. Had cervical dissection and fusion three years ago. took out two discs, replaced and fused. Best thing I ever did. My pain was the same - all of the sudden excruciating pain in my shoulder with tingling and pain in arms and hand. Hurt to lay flat - and forget about breathing! I had loss of strength in both arms and hands. I had an awesome surgeon. I hope you find your answers and get relief!

  6. Put on your running and walking shoes and get ready for Sunday June 3rd at 9:00 am in Battery Park NYC, for the eighth annual Cheryl Diamond NYC 5k Schlep Breast and Ovarian Cancer Run / Walk.

    Each year, the American Friends of Rabin Medical Center, 5013 (C) charity honors 5 survivors and 5 people who have died from breast and ovarian cancer. In an effort to create a community of support, we invite you to nominate survivors or family members of those who have passed and share their personal stories with others who are connected to the struggle against breast and ovarian cancer.

    To recommend a loved one, please call 212-279-2522 or email

    Create a team of friends online! Register for the NYC 5K Schlep

    For more information on the event click on the link below!

  7. This is not just a chic thing. I have a pain in my neck (no pun intended and not my wife). I have been worrying about what type of disease or other deadly problem it is but have not checked it out. I did go to my primary but she referred me to a chiropractor.
    Anyway this is about you and I always want you to be happy and healthy. Hope the new place is nice.


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