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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Monday, January 22, 2018

Help us build @CancerBase - MBC patients - We need YOU!

I just put the information below on Facebook. CancerBase, by patients and for patients, wants to make sure it is built using the real world needs OF PATIENTS.

To best achieve this, the initial focus will be on the metastatic breast cancer community. We would like to speak directly with a small number patients. The purpose is not to identify specific information about anyone's individual disease. We are assessing needs. The calls will be private (in other words, it's not a group of patients - they will be one on one).

My interest in this project is deeply embedded in my heart and soul. You see, when this project was first launched at the initial Cancer Moonshot, six of us were "ready to light up the world." The team has since grown, exponentially.

Of those original six, four of us were patients.

I do this in memory of Sonja Durham (May), Lori Marx-Rubiner (August), and Jack Whelan (November). They were all stolen from us in a span of six months in 2017. I wish to carry their legacy forward and I hope you will consider sharing this with those who may be willing and able to help in this information gathering process.

With a grateful heart,



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Sunday, January 7, 2018

A New Year, A New Perspective

The next chapter begins. Or perhaps, it's the next book. Already, just 7 days into this year, I am surrounded by symbolism and I'm acutely aware of each of these things.

I spent New Year's Eve with a dear friend. We raised a glass at midnight, just the two of us, watching from the warmth of her home, as those in Times Square braved what I believe I heard was the second coldest ever. At 6:45AM, I was rushing into the car, the temperature a ridiculously frigid six degrees.

Six degrees of separation from the warm house to the warm car. And likely, six degrees or less of separation among those I already know and those I've yet to meet. Symbolic.

I arrived in Arizona mid-afternoon to begin my ESCAPE at Miraval. I highly recommend anyone in the advocacy space consider applying to this conference and I will write a proper post talking about what makes this conference so special when I can collect all of my thoughts.

Back in my Uber, as we approached Tucson from Phoenix, things began to look familiar. I realized we were on a road less traveled and it took us past a place where the entrance has a sign announcing "Miracles Happen Here" and I know, the other side of that sign says, "You Are a Miracle."

I know this because it was January 2, 2011 that I first walked through that facility. Here I was passing that sign on January 1, 2018. I grabbed my phone to double check the dates and then quickly used my fingers to count. If life indeed happens in cycles, that day was the end of a seven-year cycle. Symbolic.

Fittingly, my son's birthday was yesterday, and his age this year is a multiple of seven so he too is beginning the next seven-year cycle in his life. And he will be married later this year. An exciting time for him, for his beautiful bride to be who is one of the kindest and most considerate people I've ever met, and exciting for me.

Funny in a way, was realizing that the night of January 1, 2018 would be the night of a full, bright and beautiful supermoon. I saw it as I was walking back to my room after dinner and it was right in front of me the following morning, still high in the sky at 7AM.

Later that morning, I scheduled a Quantum Leap. I did this in 2015 at the same conference. I shared my experience in a series of photos in a blogpost. It was in a group session. This time, I did a private "leap" because it felt like the right way to conclude the year of turning inward. I would boldly step outward. There are only a couple of photos because the same young man who was holding the rope to lower me safely to the ground, had to leave the rope to take some pictures. It took me quite a bit of time to steady my legs before I could put my arms at my side.

When I stepped off the pole, unlike last time, there was no fear. And as Caleb, my guide shared, it's not really a leap, I was just going to take one step forward. In 2015, I did leap, somewhat frenzied and definitely terrified. I know I closed my eyes. This time, I looked right at Caleb and calmly stated that I was ready to step forward. I took a deep breath and a simple step toward the ground 35 feet below. He lowered me slowly and I savored every gentle sway until my feet touched the ground. This time, it was controlled and without any feeling of chaos. Symbolic.

I proved that I AM ready to face what is in front of me this time, rather than simply move forward because going backward is not an option. My lessons in Quantum Leaps One and Two were incremental, and they unfolded in the time frame that I am able to handle. And that's the lesson. I was somewhat unsteady in getting to the top this time, and I recall pausing on those top pegs. I realized my legs may not be strong enough to make that last step to the top. I also recall thinking, "If this is as far as I can get, then that's all I have to give today, and that is okay. I will still be fine and I will get back down safely with Caleb's hands guiding the rope." It was in that moment of acceptance, that moment of this is all I have right now and understanding that whatever I have in any given moment is ENOUGH, that I surrendered completely. It was, for me, the ability to surrender without thinking or harsh self-judgment that I found myself stepping up boldly and fearlessly.

Very symbolic.

After we were together on the ground, we spoke about the activity and tears came to my eyes as he mentioned something about the Catskills. I met Keith in a bungalow colony in the Catskill Mountains and I felt his presence. Caleb was referring to Mike Tyson, and wanted to share a quote I'd never heard. "Everyone has a plan until they get punched in the face." I look back at 2017 as a year where I'd been the recipient of more than I'd like to count sucker punches. I suppose learning the roll with those punches, as that saying goes, is yet another moment. Symbolic.

I was reminded of the sharp contrast from my home with its sweeping views of the ocean and the moist air to the peaceful backdrop of the Catalina mountains and the dry desert air when my sinuses decided to let me know they needed some hydration. I ignored this until my nose decided to shout a wake-up call at me. I was not sick, I felt fine, but an annoying running nose? A reminder to pay attention to what my body needs in any given moment: Stay present and check in with myself. Symbolic.

Having dodged the blizzard in New York, barely paying attention to any of it until I contacted the person who always transports me to and from the airport told me to call him when I knew for sure I'd be on a flight. He wasn't too sure I'd be getting home. The airports in the northeast were all jammed up from the cancellations. Yet, I did get home on schedule, without a single delay and this was with an uncharacteristic itinerary requiring connecting flights and checked bags. Generally, I avoid both. Smooth sailing, or should I say flying. Hopefully, this will be symbolic of what lies ahead.

When I returned last night it was still as frigid as it was when I left on January 1. I picked up a total of one degree in temperature. It was seven when I exited the terminal at JFK. I don't recall when it's been this cold for this long. I despise the cold and I'm beginning to assess my desire to stay in NY but it is home.

I'm thinking that as I approach some upcoming unpleasantness, or downright ugliness which I expect to begin unfolding in just days, I will use this icy weather to remind me there are times I, too will have to replace my blood with ice. I will maintain steely iciness when dealing with those who wish to see me punched in the face. I will stand tall. No one will rattle my nerves and I will be on the sunny side of this.

I can't control the punches, but I can stop the bleeding.

I can't control the weather but I can turn toward the sun to feel its warmth and allow its light to guide me.

And, I can't think of a better place to have spent the first week of this new year. The group of people I was with at the conference, some close friends who so very dear to me, and now, new friends, too helped me open my eyes fully and helped me realize throwing in the towel isn't even an option I can entertain on any level.

And so I move, #AlwaysForward. With a reminder, a gift I purchased right before I left. A chain to wear around my neck. The message attached to the chain says everything I need to remember.

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