First Steps of a Long Haul

I’ve come to realize most of us, myself included, have an incredibly limited understanding of the true reaching extent of the prickly fingers of breast cancer treatment. The facts I thought I knew were enough to send me running, but once I conceded that fight I began to learn the even scarier truths behind my previously sketchy understanding of the reality as it’s experienced inside a living, breathing body.

Mastectomy is not just losing a breast. Aside from the painfully obvious emotional tribulations that are going to inevitably accompany the amputation of such a personally relevant, culturally-fraught body part, a seemingly endless list of other peevish details come with: Once home you can’t shower for roughly two weeks because of a plastic tube dangling from a hole in your flesh, through which a pale red liquid drains into a bulb which must be emptied and measured three times daily; you will likely have little to no sensation in the “breast” ever again, whether reconstruction is opted for or not; if you choose to have reconstruction, it will most likely be a lengthy and arduous process. Many women, like me, receive a tissue expander at the time of mastectomy. This expander is periodically injected with saline solution so that the pectoral muscle, under which the expander has been placed, can slowly stretch. This hurts. Unlike regular augmentation of a healthy breast, there is no natural breast tissue to help anchor the implant, so the pec is the best structural resource for keeping the implant in place.

Unfortunately, those of us who have to receive radiation will frequently experience cosmetic problems with reconstruction. Radiation jacks up tissue, plain and simple. Future surgeries to correct these problems are quite common, and for this reason reconstruction on irradiated tissue is often performed using the back muscle. The latissimus dorsi is detached and wrapped around to the front to anchor the implant, because all of the tissue in the front which has been radiated is generally no longer useful. This obviously has the potential to greatly affect upper body strength. Probably a nuisance for most people, an incredible sticking point when you stand on your hands for a living. My docs have agreed to perform my reconstruction in between chemo and radiation, with fingers crossed that the implant will keep and my back muscle can stay put where it is -- although there is no guarantee this will happen -- offering me assistance not only in down dog but also with things that come up daily in life, like opening heavy doors and vacuuming.

A full six months after radiation therapy is complete (radiation, by the way, will be five stinking days a week for six weeks, and will not start until I’ve completed -- if all goes as scheduled -- 4 ½ months of chemotherapy, followed by a month of rest, then reconstructive surgery to receive the implant, then the radiation regimen), surgery can be performed to craft a nipple. Until this point the reconstructed breast will be bald and smooth aside from the scar that will forever traipse across its equator, something that looks normal clothed, but still alien to anyone not used to seeing a breast without a nipple or areola. Once that surgery has healed, the final step in the process, tattooing the nipple and areola (yep, that’s how they do it!) can occur. And voila, just like that, you have a new breast, or as my online breast cancer buddies call it, a foob. Until it needs to be replaced or removed, which is also inevitable.

This just scratches the surface. This is what will definitely happen. The potential for what they call comorbidities (!), such as lymphedema, infection, etc. exist, and if present will include further treatment, intervention, and overall delay. And this is just the re-crafting of the breast. The other components of the process, the really potentially harmful stuff, comes with literally pages of godawful side effects.

Gulp. I’m still in the beginning phases of this process and have not yet thoroughly wrapped my mind around it all, much less truly steeled myself for what’s to come. I don’t know if that’s even possible. On the phone this morning my sister said with a sigh, “I guess the only way to get through it, is to go through it.” She’s right. There’s no way around the extreme difficulty of it all. It’s time to grit my teeth and let the process take me where it will, believing just by virtue of the fact that I’m still here that I must have the strength to do more tomorrow. Plenty of others have done this, and more. Now let’s get it done.

Holding On, Letting Go

After wandering around in a not-quite depressed but semi-fugue state for the past couple of weeks, today I finally got my cognitive wits about me enough to sit down at my computer and get some work done. I sent a message to all of my staff alerting them to this rare state of affairs and encouraging them to take advantage of my current willingness to actually do stuff, in case they had any requests. For better or worse, I am the resident web master (ha), and with upwards of 15 instructors we have frequent need for online revisions, updates, and announcements.

My relationship with yoga in all of its incarnations has been subject to some pretty hefty challenge the past year. The practice is not just a part of my physical, spiritual, and community life. I also wear the professional hats of instructor, owner of a studio offering over 30 weekly classes, and Director of West Virginia’s premiere Registered Yoga School, the first in-state resource for motivated yogis to receive industry-approved 200-hour training to become yoga teachers. Cancer has swarmed these realities with a flurry of confused chaos, has dared me to keep my breath steady within my own practice, let alone within the capacity of instructor, and as the leader of this gentle, generous pack.

As my body has forced me to rest, I’ve allowed the physical practice to take a backseat to meditation, mantra, and what I like to call the yoga of everything. For the most part I’ve been able to keep my teaching schedule since being diagnosed, but last year, with several students already registered, I was forced to cancel teacher training, what I consider to be the true capstone of my yoga career so far. I was convinced, determined, utterly compelled to not let that happen again this year.

So today, when I sat down to update my webpage, I paused in front of the computer and looked with an unspeakably soft heart at the picture of my first graduating class, their nine incredible faces radiating the perfect advertisement for my next training scheduled to start October 1. I highlighted the picture, paused with the cursor hovering over it, and then put my face in my hands and allowed myself to sob before finally deleting the image from the site and officially canceling the training.

I understand that cancer will not take everything from me, that whatever I need will always be there in abundance, just like it always has been. Right now I have no choice but to let it borrow what it needs, and to accept the rugged lessons that come with the struggle. For now, my challenge is to pace myself as I stumble through this unlit minefield, pausing when I need to catch my breath, letting go of the things I continue to insist define me, while beginning to step into the truths yoga has taught me for so many years, in so many ways.

It is through yoga that I understand I am not my yoga, my business, my body. I simply am. Nothing more, nothing less. This level of letting go, forced as it has been, is burnishing whatever good lives within me, of that I am sure. In yoga we love our Rumi. He tells us, “Suffering is a gift. In it is hidden mercy.” I believe this, and invite it in, to settle into the cracks left by loss, to remind me that I am still whole.

Uncurling the Fist

At this point in my journey I am faced with, as I see it, an impossible choice between honoring the wishes of my family and trusting my own intuition. I have followed my intuition since my diagnosis, have done everything in my power to allow my body to heal itself while, in typical April fashion, giving the establishment the finger and reacting like a bucking bronco to anyone who has the balls to look at me and tell me that I have to do anything. A sticking point, for sure.

At the time of diagnosis, more than a year ago, I was told that the cancer was likely already invasive, given the size of the “area of irregularity.” This is not something they can know for sure until surgery, an option I refused until three weeks ago. In the meantime I’ve stared cancer down every single second, on my own, against a barrage of judgment, fear, misunderstanding, and relentless angst from within and without. I’ve said to my husband (and at this point, my therapist...another new one for me!) that the worst part about this entire experience so far has been other humans.

I’d be remiss if I didn’t also say that other humans have been the best part about this past year. You know who you are. I love you and offer you the deepest gratitude a soul can know.

Despite negative results from a biopsy performed prior to surgery on a suspicious lymph node, the cancer was found to be invasive at the time of mastectomy. I had 100% faith that the needle biospy result was conclusive, that the cancer had not spread to the nodes, and I came out of surgery bouyant and ready to leap forth into the rest of my life. I was on cloud nine. I did not miss my breast, despite the new and alien 9-inch scar worming from breastbone to armpit. My immediate sense was that I was cancer-free. The saga was over.

I was wrong. But here’s the rub, and something I don’t think most people understand: I could be right. There is a very, very good chance that all of the cancerous cells in my body were removed along with the surgery. Believe it or not, though, in the year 2014, modern medicine has still not divined a way to test for this. So if you’re like me, and there is no evidence of disease, but you have nodal involvement, they give you chemo and radiation just in case. In my life, if there is such a thing as my worst nightmare, I’m pretty sure this is on the super short list, number two behind something else I will decline to form on paper. I’m more comfortable, much more comfortable, breathing through the what-if’s and trusting that the cancer is gone. My immune system has been relieved of a very hefty tumor burden. I trust it’s ready to kick ass on any stray cells.

If I lived in a vacuum that’s the route I would take. But, like a dear friend who also happens to be a physician reminded me recently, I chose to be married and have a family. If you believe the statistics (another biggie for me, not so sure I trust the studies or much else being generated by the pharmaceutical machine), then conventional treatment has the potential to significantly decrease my chance for recurrence. My husband is latched onto these numbers with terrified ferocity. This isn’t an issue he has any intention of relenting on, and the wrangling between us has already become unbearable. He loves me. He just wants me to live.

I want to live too. The flip side for me is that I could be one of the people that never would have had a recurrence anyway. I could be subjecting myself to all of the side effects, some of them life-threatening, for nothing. Because somebody else wants me to.

This has brought me to a spiritual intersection. So many well-intentioned and supportive friends and loved ones have said to me, you have to do what’s right for you, listen to your gut, this is YOUR journey and only you know what’s best for you. I’ve latched onto these ideas and sunk my nails into them like some sort of indignant tiger. This is MY fucking life!

Except, in the most honest part of myself, the part that is not smothered in egotistical ire, I know it isn’t. It’s not just my life. I did choose to have a family. Their wishes actually do count.

In my heart of hearts I know I am going to be fine regardless, either path I choose. And if I’m honest with myself and really want to be true to my ideals, then I need to head on into the fire. One of the qualities I’ve always tried to hone within myself is the ability to stare down fear, to never make a decision based on fear, and to understand in my soul that that which scares the shit out of us is exactly where we need to go. I thought I was doing that by staring down the hideous gullet of this diagnosis, alone, for the past fear. And I was. I have been. This has been some scary shit. But chemo, for me, is even more scary. It’s the scariest thing on the face of the planet.

During the past couple weeks I’ve endured my first nightmares since being diagnosed, my first uncomfortably sleepless nights. In the original dream, the instant the viscous poison dripped into my body I could feel its evil presence begin locking me up into a motionless wad of fear and helplessness the likes of which I’ve never felt in waking life. The sensation was inescapable, coming from the inside out in this claustrophobic vise-grip. They had me. They had won.

Winning/losing. Right/wrong. My way/your way. This is where my lesson lives. This is why I have to do the treatments I said I would NEVER do, to trust the people I said I would never trust, to soften and open to possibilities I have, for as long as I can remember, adamantly refused to consider. While my assertive nature resists this invitation to accept, receive, and in many ways become more passive than I am comfortable being, I’m beginning to understand that this is how I have to conform.

Tomorrow I see my medical oncologist and radiation oncologist for the first time. They work as a team along with my surgical oncologist, and because of this have already reviewed my pathology reports and shared their intentions with my surgeon. In short, I have a basic outline already of what they will propose. As I breathe my way through the preliminary paperwork and allow myself to encourage whatever emotion that needs to find its way through me to do just that, I offer up prayers for strength, for acceptance, for trust. I open the palm of my hand, relinquishing the closed fist I’ve brandished for a year, allowing my will to soften to the hope of possibility, and my spirit to believe that all is well. Without force. With only love.

Om shanti.