AMONG THE WARRIORS

“As coal is pressed into a diamond, experience presses us into the clear jewel that we are.   ~~~ Mark Nepo

Sometime in the middle of last week, I became struck by the spectrum of people who filled the radiation oncology waiting room, who had by coincidence and what some would call “bad luck” ended up sitting, day after day, together, awaiting the painful process that would bring about healing. Their variety is marked, from the brash, confident young woman juggling her devices, clearly ready to get her treatment done and be on her way, to the stooped, elderly couple who, though he be the patient, leaned equally upon one another. There is the middle-aged Latina, always alone, with sad eyes, but firm shoulders, the tall, proud African-American man who never shows any weakness, but is quick to be kind to the others, the cherubic teenager with the flowered scarf covering her bald head which, one imagines, holds the brain tumor that must be burnt away if she is to live beyond 17. She sits next to her mother, softly curling into her body until they are almost one.

And many more, each, to the person, standing up and saying “No!” to death. Not any one, most likely, thought that they would be having to make that choice, that declaration, so soon, but after the shock, confusion and terror had subsided, each was called upon to respond. And I can see, in the eyes of each individual, the determination, the intense hunger for life and the clarity that prompted them to say: “No. Not now. It is not my time. I still have things left to do.”

Maybe something changes when someone’s disease becomes too powerful and she is forced to surrender. I don’t see that here in this microcosm that is buzzing with life. Even the most seemingly depressed and beaten down don’t have the look of defeat. Not even one. These people are warriors, in the true sense of the word, and if anyone is looking for examples of real courage, I would invite them to just come in, take a seat, and look around. This is where life is affirmed and embraced. It is where ordinary people become extraordinary because they look unwaveringly at death and choose life.

And if you still have doubt? Stick around for when one walks up to the giant brass gong at the exit and wallops it so hard it reverberates throughout the room. This signifies to all that one of us has made it and is walking back into his now glorious life. Eyes light up and the place just sizzles!!

 

LEARNING TO LET GO…

     My first essential lesson in this process of seeking healing hits powerfully as I realize that I am not in control. What??! So crucial to a healthy sense of self, as anyone who has studied developmental psychology knows, is having a locus of control, a sense of personal power. But here’s the catch…navigating those waters means coming to know, first, what we can control and, then, where we have choice. It sounds easy, but being suddenly in the lair of cancer and its concomitant medical maelstrom can really muddy the waters.

     I have cancer…I know that and I know that I cannot change that fact. But the fear and anger that arose seemed to materialize in a stamp-your-foot, “you’re not the boss of me” attitude that was frustrating and, well, not supportive of my effort to find balance and equanimity. So in the first several days of treatment, I have vacillated between wanting to be the ideal patient so that everyone will love me and, therefore, cure me and wanting to rebel and only pick and choose options in order to prove that I was the one in charge (really??). It was an emotional battle and, incrementally, I began to see the distinction between being strong and choosing where I could and should choose and surrendering where I must in order to receive all of the healing available from the medical specialists, as well as a greater spiritual Source.

     The regimen is, indeed, tough, I have discovered. My medical oncologist gave me choices about how much anti-nausea medication to take and the aforementioned rebel, along with my recessive martyr shadow, resulted in my taking very little medication…and paying for it dearly. In my own defense, however, the drugs each have miserable side effects too, so I did try to make a wise choice. For upcoming infusions, however, I will be fully medicated over all four days!

     The radiation therapy experience is a challenge as well, but I am trying hard to treat it as “lightly” as possible and to have a cheerful outlook, primarily because I know that a positive attitude helps me to coast better and then, of course, it represents an actual choice that I can indeed make (that modicum of control!). The mask I must wear throughout each treatment is super-tight, especially following 2 hours of IV fluids prior to the afternoon session and, after suffering in silence, unable to breathe properly for 10 long minutes one day, I mentioned the discomfort to the doctor who promptly suggested a remedy. He had the techs cut two small slits along the sides of the nose…voila! So much for martyrdom…flimsy reward.

     Finally, my heart has overflowed with gratitude and love this first week for all who have given their support and encouragement so generously! 

    Dear, sweet Paul has been with me every step of the way and has patiently listened when I became too overwhelmed to hear all of the instructions, warnings and caveats that swirled about as we went from doctor to nurse to pharmacist to technician. Even more valuable, he has listened to me struggle with this letting go and he has compassionately accepted my process without judgment. And all of my amazing and incredibly kind friends and family, especially my beautiful Caitlin, lovely and wise JR, my inspiring sister, Eileen, my soul sister, Nancy, my yoga buddies, my Thursday night women and the fabulous and supportive women from work. You all just ROCK and I am so privileged to have you in my life, especially during this critical time!!!!!

     Finally, since I believe that there are almost no coincidences, I will offer this quote from an article that I just happened to be reading while awaiting my first treatment today. It is from an article by Joy Hosey in Spirituality & Health:

“Real Strength knows how to surrender to what’s present; true Surrender requires strength to relinquish control in order to tap into a larger source of power.”

GEARING UP

It has certainly taken me much longer, this time, to arrive at this emotional launching pad. I am older and, if a keen awareness that my time in this earthly realm really is limited is any indicator of wisdom, I am indeed wiser. Still, I feel a richness and a depth that I believe I was incapable of 11 years ago. I also feel much more certain about my life’s intent and more earnestly determined to stay alive long enough to, truly, be of service. There is an inexplicable knowledge, a calm core assurance, that I will weather this particular storm and emerge not only stronger and fiercer, but also more deeply compassionate. I have held back for too long, choosing to remain “tight in the bud” and wrapped in self-protective swaddle, and it is time to soften, open up, become porous and receptive.

How do I come to these realizations? I can’t really say, but it is a deep knowing, an unshakable confidence. This doesn’t mean that I have no more fear or am, suddenly, anxiety-free. It means, rather, that I am learning to acknowledge the fear and anxiety and can let it soften, thus rendering it less powerful and noisy. I think that it is quite natural to fear the unknown and even, in the case of all of the messages I’ve been given about how grueling my treatments will be, to fear the “known.” But since nothing that is to be in the future is ever really known, it occurs to me that fearing it might be a waste of the present moment and, above all, that moment must be lived and valued. I also know that whether the upcoming few months are horrible or not, they will pass and I will be okay. I know this and I know that, regardless of however the experience will be described, it will, undoubtedly, contain many lessons and will help me to grow in ways no other experience could have.

NO MUD, NO LOTUS.

I’m ready…

On a practical level, I am more than ready! The juicer and the Vitamix will be on hand. CDs have been selected and a “cancer-fighting” playlist created, to be played as I lay on the radiation slab, buckled into my mesh, Darth Vader-like mask, holding the stirrups to keep my shoulders from creeping up into the line of fire. It includes the usual suspects, like “Fight Song” and Katy Perry’s “Rise,” along with “Brave” and even Miley Cyrus’ “The Climb.” My favorite, though, is one I think especially suited to radiation therapy – Alicia Keys’ “Girl On Fire.”   Other supplies are on order and will further support the effort – barf bags, glass bottles for my liquid meals, more books (can never have enough!) and a big, cozy LazBoy chair for maximum healing and relaxation. Most anticipated, though, is a fifth chakra (throat, of course) necklace being created by dear Cheryl Fenner Brown, a sweet, generous, life-loving yogini-teacher who specializes in guiding folks with cancer. I will wear this necklace throughout this time of healing and be ever aware of the power of creativity, of listening, and of speaking one’s truth.

So, yes, I am ready to commence what I am choosing to call my Radical Cleanse. The drugs and radiation will actually detoxify my body by ridding it of the Evil and I will further the effort by cleansing my heart, mind and soul of all that is unloving, life-deadening and pernicious. 

Bring it!!!!!

Birdwings

Your grief for what you’ve lost lifts a mirror
up to where you are bravely working.

Expecting the worst, you look, and instead,
here’s the joyful face you’ve been wanting to see.

Your hand opens and closes and opens and closes.
If it were always a fist or always stretched open,
you would be paralysed.

Your deepest presence is in every small contracting and expanding,
the two as beautifully balanced and coordinated
as birdwings.

  ~Rumi

A TINY GLIMMER

Although I certainly experienced much relief after learning the details of my proposed treatment plan, all of which I wholeheartedly assented to, I still spent the remainder of the week in full roller coaster mode. My emotions went from calm and confident to terrified, within moments, and did so frequently. I had vowed to stay away from message boards and even from legitimate websites that discussed treatment options and survival statistics because, inevitably, stories of recurrences and refractory disease cases were cited and, of course,  those are the ones that jumped out at me as though they were written in bold, red, giant font. And then I couldn’t “unsee” them and, so, went into yet another full panic. The other issue that made me feel faint and break into a cold sweat was the prospect of choking which, while not discussed on the medical info sites, was mentioned in an article about a survivor and by one or two posters. Now a reader who had no unusual or inordinate fear around choking would probably not have paid these accounts much heed, but I am not that kind of reader. No, rather, I am extremely phobic about only one thing…choking. I have had the unfortunate experience of suffering from several other throat-related diseases (yes, I know – gotta work on healing that 5^th chakra, but more on that topic in a future post) and, so, have had a few episodes involving choking, with the accompanying sensation of being unable to breathe. Terrifying.

So the week was like that – up, then down, confident, then fearful, optimistic, then doubtful, determined, then uncertain. UNTIL THIS…

It’s Friday and I’m just hangin’ in the breakroom at work, waiting to fill up at the water cooler, when a colleague who knows that I have cancer, but not what kind, asks how I’m doing. I reply briefly, indicating that I’ll be starting radiation and chemo on 9/12. She inquires further and when I mention that the cancer is in my throat, at the base of my tongue, she suddenly becomes animated and reports that another employee, someone I don’t know, has had a similar cancer and what sounds like similar treatment. Of course, I immediately asked my co-worker to contact this woman to see if she would be willing to communicate with me regarding her experience and, ultimately, became engaged in a series of emails with the other co-worker who provided not only much valuable information, but precisely what I needed the most – an assurance that there shouldn’t be any need to worry about choking. She confirmed that I might want to invest in massive quantities of Kleenex and should be prepared to sleep with my head elevated and to need regular pain medication in order to keep my swallowing reflexes and muscles in good shape, but no actual choking should occur.

Call me crazy, but I instantly fell in love with Linda Z. No, really, we did hit it off and I am so enormously grateful to her for her calm reassurance. The chick is smart (and not just because she has a BSN and an MPH), a good communicator, most encouraging and positive and just, well, inspiring! Plus, like me, she has a dedicated yoga and meditation practice and, in fact, claims that she couldn’t have made it through as well as she did without her daily practice. Yes, she is a woman after my own heart! Oh, and did I mention that she is 5 years cancer-free (and had been diagnosed at stage 4!)?!

So…spending the remainder of this 3-day holiday weekend going to magical Nina Be’s singing bowls restorative yoga class and doing several beautiful guided meditations. Also planning to purchase a cozy, sumptuous recliner for some healing days ahead. And, finally, I’ll be trying out some yummy juicing recipes as well as planning superfood meals to make in my new Vitamix for when I need to switch to PEG tube feedings. Yum, right? J

And stay tuned for my next post…about Tuesday’s radiation simulation, where I get fitted with a giant, full-head, mesh mask that they will use to screw my head onto the radiation table for each treatment. Good times, y’all!

CANCER BOOT CAMP!  

On Monday, I had my first visits with both the radiation oncology and the medical oncology teams. I left feeling overwhelmed, but also reassured that there was a plan and it was to CURE this monster that had invaded me. I was told, over & over, that the road would be tough, but was manageable. Here is the body of the message that I sent out to my family and friends to let them know what was ahead:

August 29, 2016

I am writing this to report that, after many hours spent at UNC Cancer Hospital today, meeting endlessly with radiation and medical oncology people, I am filled with hope and the certainty that I will be cured of this cancer. Yay! I walked in hoping for a bit of comfort, reassurance and encouragement and received something only slightly less than a guarantee. This is because my cancer is “small,” the lymph node to which it has spread is also “small,” the pathology from last week’s surgery determined that the malignancy is actually HPV-positive (previously thought to be negative, but positive is way better and far more amenable to treatment) and UNC (according to them, of course) is one of rather few hospitals that specialize in curing head & neck cancer (who knew?). I was told that although HNC (head & neck cancer) comprises only 6% of all cancers, the UNC Radiation Oncology’s patient population is 25% HNC. That means they are just freakin’ flocking to Chapel Hill for the cure! In any event, both my radiation oncologist and my medical oncologist (I love them both, BTW) are just convinced that I will be cured if I follow the treatment plan they are recommending and I think I’m gonna believe them!

Okay, that’s the good news. The “bad” news is that, according to both of the oncs, the course will be very, very hard and I’m going to be very, very sick. They did not mince words about this. But, they assured me, if I kept up my nutrition, weight and general health, I should recover well. There are some nasty side effects to both the radiation and the chemo, especially because I’ve had the brachial plexus and the carotid artery radiated before (breast cancer), but they are recommending some variations on the standard plan to help reduce possible weakness or paralysis of my left arm and potentially greater risk for stroke in the (far) future. There are also measures I need to take to prevent kidney damage from the chemo and I might be left with some hearing deficiency and/or tinnitus from the chemo too. But, people, I won’t lose my hair (well, a small bit right above the radiation site, but underneath the rest of my hair) and the chemo won’t cause neuropathy or neutropenia…yay!

So, here’s the plan: I start treatments on Monday, September 12^th. I will receive radiation twice a day, every weekday, for nearly 7 weeks (whoa, right?!). We’re doing twice a day so I can receive a lower dosage per session and, hopefully, avoid the aforementioned weakness/paralysis/stroke (lots of careful follow-up, etc. for that stroke risk which, btw, is about a 10% increased risk…so not a monumental risk). Then, I will have chemo only 3 times in total, 3 weeks apart. Each infusion day will be followed by 3 sequential follow-up days where I will receive massive amounts of fluids infused to flush the chemo out rapidly in order to avoid kidney damage. And you all thought I went to the bathroom a lot now!!

So, as you can tell, I’ll be spending most of my hours, over the next 2 months, at the hospital. They have great wifi and for the first several weeks, I will put in my 40 hours (but taking vacation days for the chemo and fluid days). Around October 9^th, I hope to be approved for short-term disability for the next 6 weeks, which will bring me 3 weeks post-treatment. I am told that the side effects from radiation will be the worst then and, so, I will plan to be especially kind and gentle with myself during that period. And I’m hoping to return to work the Monday after my birthday, on November 21^st.

And that’s all, folks. I wrote this up so that I wouldn’t leave out important info and so I didn’t have to repeat it too often. If you think it sucks, etc., I’ll agree but will also point out that I think I am experiencing this for a very good reason and I plan to get as much out of it as I can, ultimately becoming so WISE that you won’t be able to stand being around me! I am also EXTREMELY GRATEFUL that this is not a far worse cancer or condition and that they are using the other C word – “cure.” Yes, I am definitely very grateful…

 

August 27, 2016

IT DROPS

It has been one month, to the day, since I heard the terrifying words, “You have cancer,” for the second time. I always thought that if breast cancer returned or if I developed a new cancer, I would be seasoned, an old hand at “doing cancer” and, so, wouldn’t experience that icy-cold sweat and sheer paralysis that had descended only once before, that first time. I would be calm and accepting and simply slip into the Warrior Mode that I thought I had mastered on the first go-around.

I was dead wrong. This time was far worse and much more terrifying. I actually thought that I had learned all of the lessons and acquired all of the wisdom that cancer had come to teach me. I thought that I had done it all right the first time and had, in fact, been the model cancer survivor. How, then, did cancer have the nerve to visit me again?! Didn’t it know that I was done with it and had incorporated all of the lessons it had taught me?!

Apparently not.

So there I was again, in a cold, ugly hospital examining room, with my neck throbbing from the assault of the four sequential needles plunged in in order to draw out enough specimen to determine my fate. I heard the verdict, as though from a distance, the doctor detailing the clinical characteristics of the malignant cells and I proceeded to ask all of the right questions, calmly and evenly, behaving, of course, like a well-behaved and oh-so-cooperative patient. Maybe if I was really, really good, she might take back her words, telling me it was all a mistake? She didn’t, of course, but proceeded to set up appointments for more diagnostic testing and consultations with oncologists. I really don’t recall much else of that day, except my hoping, crazily, that this was metastatic breast cancer because then, at least, I’d be on familiar ground. And then I began to feel myself fading, as though I was being swallowed up and engulfed by an unseen, monstrous force. It was inescapable. I was no longer my Self but, instead, was buried within Evil, unable to breathe.

But back to the present- today, a place where I am determined to stay for now, always in the ever-changing present, with my feet planted and my body and mind seeking positive energy and continuous healing. I have been through all of the diagnostic procedures, as well as the emotional highs and lows that come with each new piece of the puzzle. I have been diagnosed with locally advanced (meaning it has stayed within the neck, but spread to the lymph node) squamous cell carcinoma with the primary site in the left base of my tongue. I now await the design and launch of the Plan, the schedule of treatments and therapies that will, ultimately, bring me back in balance, back to health. The conventional treatments, which I embrace wholeheartedly and with much gratitude, will, literally, burn the cancer out of my body. The complementary therapies, that part of my treatment over which I have control and choice, will create a harmonious and loving environment within me that will support robust, healthy cells and make most unwelcome the unhealthy ones. My doctors are very optimistic, but I am more so.

Just as we set our intentions before yoga class or before undertaking any important endeavor, I have set my intentions for this challenge:

1.) To cultivate a balanced and loving environment within my body, one that lets cancer know that it is not welcome. My healthy cells will thrive, while the cancer will starve and die. The treatments will do violent battle, but I will merely cultivate a harmonious domain in which evil cannot survive.

2.) To allow myself the opportunity to live with calm and ease and to fully live in each moment, despite going through a difficult period.

3.) To learn and to practice true self-care and self-love.

To achieve these, I will:

• Not abandon myself.
• Always come home to myself.
• Listen to and trust myself, relying on my intuition, my gut.

Let the journey begin!!