In her own words…
“You never think it’s going to be you. I know I didn’t. One day you’re trotting through life, going about your business and the next you’re suddenly booted out of the herd without any warning at all and left in a pile of dust wondering what the heck just happened. Actually, that’s downplaying what happened to me a little bit. OK, a lot.
Six weeks after running my best time in a half-marathon, I was told I was in Stage IV of one of the rarest (less than 65 cases ever documented—in the world) and most aggressive types of cancer and given less than a five percent chance of survival. I was 31 years old and I’d never felt better. I’d literally uttered words to that effect just weeks before I found out I had a 4 cm tumor on my cervix and multiple metastatic tumors in my liver that were so aggressive they had already become necrotic. That means they were basically imploding because they were so active—and not in a good way. I would later find out that the primary tumor on my cervix had quadrupled in size in the six days following my first visit to my GYN Oncologist and an emergency hysterectomy. It was almost a week before we even had a name for it. Clearly, time was not on my side and we were in an all-out sprint to figure out what was going on to even begin to know what to do about it.
And my first symptom? Abnormal vaginal discharge. Lovely…, right? For a while I was almost embarrassed to tell anyone that fact when they asked, other than close family and friends, for fear they’d think I had “the funk”. There’s so much (albeit wonderful) media hype around cervical cancer and the new vaccine that can immunize women from contracting the HPV virus (and therefore prevent the virus’ cancer-causing effects) that it’s the only type of cervical cancer anyone seems to know about. But in my case that was the furthest thing from what it actually was. Quite honestly, I would have gladly welcomed the “regular” kind because at least it’s slow growing! Instead, I had this crazy, odd ball, “one-in-a-million”, “you-always-want-to-be-special-but-not-THAT-special” thing that seemed to have a mind of it’s own—one that no one seemed to know anything about. I mean, it took a whole series of extensive, highly-specialized stains by a pathologist at a nationally-recognized hospital to even find out what it was and another still to confirm it a second time, “just to be sure”! If we were hoping it was “A” on the list of possibilities, this was “Z”—the worst of the worst. “Large-Cell Neuroendocrine Cancer of the Cervix…With Distant Metastases”. Seemingly healthier than ever before (in my prime, even!) I was declared to be in Stage IVB of this alien disease. There is no Stage V.
We got the call on the third day of frantic, back-to-back testing, just as I rolled back into my hospital room after having a liver biopsy of one of the tumors. (NOT fun and I definitely do not recommend trying this unless you absolutely have to! …which, of course, I did.) I was in a lot of pain and scared because things seemed to be going from horrible to hopeless faster than I could process them. “Alyssa, we have something to tell you…” But as they told me and everyone else was falling apart—knowing that I had basically just been given a death sentence—I exhaled for the first time since this nightmare (that had suddenly become my life) had begun. We had a name. And that also meant that we could now have a plan. GAME ON.
But that, of course, was just the beginning, only a starting point. And if I had a dollar for every time a doctor (because I instantly had about ten) said, “We just don’t know…”, “We just don’t know…”, “We just don’t know…” well, let’s just say I’d be “Oprah rich”. Due to the rarity of what I was facing (that “special” thing again), there were no well-worn paths with mega trials or volumes of data to follow. Not even one, actually. The “standard therapy” they had used up until this point for the few of us who had found ourselves in these uncharted waters was actually for small-cell lung cancer—which I did not have. And with that mismatched protocol just about all of the outcomes had been “poor”. Ummm, no thanks.
So, now what? There had to be something else. Well, step one was a total robotic hysterectomy because of the location, size, presence and aggressiveness of the primary tumor on my cervix. Not having any children of our own yet, that meant that within five minutes of meeting my GYN Oncologist for the first time, we were having a conversation about never being able to have any kids of our own. And as hard as that was to accept that at the time because we were actively trying to get pregnant, I honestly didn’t have the luxury of sitting with it too long because things were getting worse by the second and every moment we delayed surgery the tumor was getting bigger and my chances shrinking. Also, I’m a Physician Assistant, so as impossible as it was to wrap my brain around what was happening while candidly discussing permanently shutting down my “baby factory” when my husband and I had been hoping to expect our first child soon, my medical mind understood my options all too well. I knew surgery could take care of the primary tumor, but what about the ones in my liver? And all I could think was, “You can’t live without your liver…”
As a clinician, you’re trained to start with the worse-case-scenario and work your way down from there. What is most life-threatening right now, most imminent? Rule that out and then move on to the next. OK, then what’s the second most potentially damaging thing that could be going on here? And on down the list, usually ending up somewhere around the bottom tier of all the “threatening things” to what it actually is. But suddenly I didn’t even have to go past the first one. And I knew what that meant. Mind mind scrolled through all the times a patient’s chest pain had turned out just to be gas, the chronic breathing problems just an allergy, the headaches, just stress. But suddenly it was that first thing, the “catastrophic” one that you couldn’t move away from fast enough because you knew what it meant for them. But this wasn’t another patient I was diagnosing…it was me.
Now all of that would have been enough—more than enough—but I was no stranger to the “impossible” arriving on my doorstep. And in some ways that made me more prepared for the shock of this second blow, and in other ways I was that much more UNprepared because I thought I’d already “paid my dues”. I’d assumed that we all had one really tough “thing” we all had to face in our lives—a divorce, the loss of a loved one, a tragic accident, a house burning down—all those “God forbid” things that only happen to “other” people. Well, I was wrong. Apparently, God and the Universe did not get the same memo as I did. The only problem with this was that I didn’t realize my error until it was too late and “Mr. Impossible”, a most unwelcome guest, came knocking for a second time. Well, actually, he just went ahead and blew the door right off the hinges instead of knocking at all. (Kind of rude, if you ask me.)
So you may be wondering by now what happened the first time “Mr. Impossible” arrived on my doorstep. It was when my younger sister Lauren died very suddenly while we were in college. Healthy one day, gone the next, forever lost to bacterial meningitis for which there is a vaccine that no one ever told us about. This was before it was recommended for college freshman and Lauren’s death, along with a few other related tragedies, helped to change that. But the loss of her shattered me. Beautiful and vibrant, sweet and sassy, she was the baby of the family and we all adored her. Everyone adored her. I remember that in the first year or two after her death I felt like an alien on the planet, living in a world that didn’t make sense without her in it.
But time marched on, as it tends to. I graduated from college, then graduate school. I got a job, then got married (to the best man in the world, by the way) and I was trotting along in life again, choosing to be changed for the better by what I’d been through and choosing to take her with me wherever I went in life. I was even grateful, sensing it was somehow just her time and yet missing her still with every breath. I had a perspective that few had, I figured. I knew how precious life was, how important it is to savor loved ones, revel in joy, be giddy with laughter and even “bookmarking” the simplest of moments. After all, when you ache just to rest your eyes on someone across a room full of people, just to know they are there, that they’re just a few strides away, you intimately know the preciousness of life.
So at 31, having already gone through all of that, I have to admit I really just didn’t see what was coming next. At all. And as I mentioned earlier, I had literally just uttered the words, “I’ve never felt better.” People in our circle joked that I was the “healthiest person they knew”, a “health nut”. And I joked back that my military-style running regimen kept me sane, as it had through the dark times after Lauren died. At work people would kid me by asking, “So what nuts and twigs are you eating today, Alyssa?” or “What time did you get up to run this morning? 3am?” I had a degree in nutrition and I’d been an avid exerciser for almost twenty years, religiously running six miles at dawn before going into the OR to start our surgery cases. And, quite honestly, I’d never looked better either. I’d dropped some weight recently and even though I’d always been slim, I was garnering a surprising amount of attention for my new “svelte” figure. So looking and feeling better than ever before did not signal a problem to me. Quite the opposite, I was rather enjoying myself, thank you very much! But I wasn’t prepared for the reason why I was shedding pounds at such an effortless rate that was lurking just around the next corner, until I was staring it straight in the eyeball and it was too late…almost.
By the time I did have my first symptom, any inkling that something was awry, my situation was already catastrophic. I remember in the beginning when the full picture of what I was facing wasn’t clear yet and actually thinking, Cancer?? Really??, and how almost cliche that sounded to me. I could almost hear the phones ringing to alert people of my “situation”. “Did you hear about Alyssa??!” ”Poor thing…” Really, I was going to be “that girl”?? I’m suppose to be the caregiver, not the patient! But then the reality of my situation began to come into focus and what emerged was not just cancer but something far worse. I very quickly began to understand that I had instantly gone from being high on life to the fight of my life in an instant and that I was literally teetering on the edge of this life and the next, facing my own mortality this time and squarely in the face. The “impossible” had arrived—again.
So how did this nightmare turn around? Because, clearly, I’m happy, healthy and writing this. Well, that’s a good question. And I’m so glad you asked. To start with, a cutting-edge treatment was presented to me that was a joint mastermind creation by a “thought leader” in GYN Oncology and the leading bone marrow group in the southeast, that just happened to be in my backyard and in the hospital where I had worked as a Plastic Surgery Physician Assistant for the previous six years. My transplant doctor openly admitted, “If there’s an art and science to medicine, this definitely falls into the ‘art’ category.” But he also openly stated this was basically my only shot. (And after being told by an “expert” at a leading national cancer center, “You do know what this means, don’t you??”, suggesting my imminent demise, I was wide open to new ideas!) “As you know, we don’t have many cases like yours to compare it to but we’ve tried this treatment on about four other patients and three are “doing well”. It’s all anecdotal evidence (aka “We just don’t know… We just don’t know… We just don’t know…”) but it’s all we have. Well, three out of four isn’t bad… And it was better than the “stare down” I’d had with the “expert” at the other place when I refused to admit defeat. I never did ask what happened to the fourth patient and they never did answer me when I asked, “…In the world??” after they told me how many people had actually had this proposed treatment for this type of cancer. I think the latter was a “yes” and they didn’t have to answer the first one for me to know what they meant. My heart could feel it.
At that point I’d already had the radical hysterectomy and the week immediately following my surgery, I was started on an aggressive chemotherapy regimen to try to “flush out” the multiple tumors in my liver. And that was all just a warm up for the “Big Stuff”, that is, if I even made it to that point. The caveat was we had to get rid of the liver tumors and technically get me into “remission” just to qualify for what came next: two, back-to-back high dose chemos treatments with a bone marrow transplant after each one and almost a year of required “house arrest” for my immune system to then “reboot”. Followed by another year after that of “flying naked” with no immunizations before I could begin the revaccination process from scratch to replace all the ones that were wiped out with my immune system during the transplant treatments. They were literally going to strip me down to my elemental beginnings and press the restart button—twice. Oh, and then “hope for the best”. Awesome, where do I sign up?!
I won’t lie, it was tough. Really tough. And not so much the treatments, although those were no cake walk, but it was the “restart button” that was pressed on the inside of me that somehow happened along side the physical one that was the real challenge. Facing my own mortality, in complete isolation, while staring death squarely in the face, and gritting my teeth with a firm “NO”, stirring myself up over and over again to stay “positive” when everything else around me was dragging me in the opposite direction, and staying laser-focused on what I wanted and not what was actually happening…now THAT was hard.
And you know what? I worked really hard at it. All of it. I threw everything I had at it and more. I decided that surviving—no, thriving, in spite of it—was the ONLY option. You see, I realized early on that the mind is a powerful, powerful thing—the most powerful tool we have, actually. And while I couldn’t control a lot of things that were happening to me, I could control my heart and my mind. No one could make me feel afraid unless I let them. No one could honestly tell me what was going to happen either way. And no one could tell me it was going to be OK. But I could. I could tell myself all of that and more. No matter what anyone else said, I was the gatekeeper and I could decide what I would let in and what I wouldn’t. Simple as that. Now doing that was a bit harder, as it often is, but I made it my job to figure it out. I took responsibility and control for who and what surrounded me as much as I possibly could and then I went about the business of reinventing myself.
Again, I’m not going to tell you it was easy because it wasn’t. I changed everything. And when I say everything…I mean e-v-e-r-y-t-h-i-n-g. And it was HUGELY overwhelming. I’ve equated it to trying to drink out of an open fire hydrant. But you know what? I figured it out. I had to. My life depended on it. I started working with a specialized nutritionist who’s an expert in working with cancer patients. I started long sessions of prayer, meditation and visualizations. I made vision boards and affirmation cards. I explored emotional healing techniques, energy medicine, Ayurveda and learned yoga. I started having acupuncture and getting chiropractic adjustments more frequently. I started juicing, switched to all glass storage containers and stopped using the microwave. I literally grabbed everything I could, that felt right to me, and gobbled it up. No stone was left unturned. And this was all going on while I was going through my treatments. Because to me, you don’t fight a disease, you fight to live. So I was “all in” and I fought with all I had. I had too much to live for, too much I wanted to do and see, too many “mountain peaks” of life I wanted to summit. I just had to figure out a way to navigate the vast ocean that I’d been called to cross. And, quite frankly, I knew my family couldn’t take another loss. I’d seen what my sister’s death had done to each of us, the vast crater left in our family by her absence and I wasn’t about to let that happen again. Now I didn’t have a crystal ball. I didn’t know if I would make it or not but I did know that a fire had been ignited on the inside of me and I was going to fan that flame with everything I had. And as I looked into my husband’s eyes and recognized his fear and brokenness over losing me, I thought, “He won’t know this. They won’t know this again.” There was no other option.
So, fast-forward a few years. I finished my treatments, spent my birthday, Thanksgiving and Christmas of 2008 in the hospital and finished my last transplant just in time to ring in the New Year, a new beginning. I bided my time for several more months of “house arrest” by continuing all of my newly-learned disciplines, having to get extra creative with food preparation since I could only eat cooked items, showering with Press-and-Seal, zip lock baggies and duct tape to protect the catheter still embedded in my chest from the treatments, and choosing to look at this time of isolation as a rare opportunity to press the “pause” button in life rather than being just locked away from the world while we “waited”.
But Winter turned to Spring and with it came fuzzy new rows of eyelashes and eyebrows and a downy fluff of hair on my head—along with a permission slip to go outside! And as my body healed, the transformation within continued as well, often mirroring where I was physically. Like a newborn baby, I felt new in the world. Having been absent for so long, it seemed strange and loud and BUSY now. It was as if I had emerged from a dark cave after a long hibernation and was squinting in the blazing light and noise of the world. It took me a while to get my legs back under me, so to speak, and while my physical body made a pretty miraculous come back (I was running again just two months after my last transplant and had “power walked” on the treadmill of the bone marrow unit and at home every day during my treatments and beyond), the inside took a bit longer to heal. Actually, a lot longer.
At the one-year mark post-transplants and after being cleared to begin my revaccinations and to fly, I began traveling again and one trip turned into three and then five and more opportunities seemed to keep presenting themselves in rapid succession. Suddenly I’d been all over the world, going to Spain with a friend, Costa Rica for a wedding, the Maldives because of a once-in-a-lifetime offer from a friend, Greece and Turkey to celebrate my healing, Israel with a Christian group where I had given a speech, rafting in Utah to celebrate my husband’s 40th birthday and, most recently, Alaska and Vancouver to celebrate my in-laws 50th wedding anniversary and our 8th. During all of this there was an intense urge in me just to LIVE, to simplify everything (somehow even the smallest of things seemed overwhelming…PTSD??) and to explore life in new ways. I was immensely blessed and grateful to be able to do all of these things, but I’d be lying if I said it was all shiny and bright the entire time. It was not. There were days that the best I could do was not very good at all and yet I was healed…I’d made it! It was not an easy road back, even with all of the wonderful travel, I still had to reconcile what had happened, what I had been through, how close I had come to dying, how close I came to leaving all that I loved and adored, along with the fact that I would never be able to have any children of my own. But I hope others will see what I see when they look back over that part of my story and everything since…the rainbow after the storm.
Because, once again, I made a decision. I would be better for it. And I would help other people with what I’d been through. I realized again that I couldn’t change some of the things that had happened, but I could choose how I looked at them and what I did with it. I could either sit there and feel sorry for myself or I could get busy living this amazing second chance at life that I’d been given. My younger sister wasn’t given that chance. Not everyone makes it. But I had. So that’s exactly what I did and when people ask me, “How in the world were you able to take all those trips??”, I laugh and say, “Well, some people have kids, I have trips!” We all get to choose what we do with our lives and I’m determined to choose well because I was given a clean slate. I’d been shattered into a million, irreparable pieces by what happened and I’d had to rebuild, starting over from the ground up, in every sense. I was new, inside and out. And I think that’s the whole point. You see, I had to let go of the life I’d always assumed I’d live to allow this new one to emerge. And there came a time when I had to choose faith over fear, deciding to believe in miracles, instead of beating my fists, and let go of the rest. And, let me assure you, that’s not an easy thing to do when your life itself is hanging in the balance. But when I got to the place where I had done all I could do and then was able to say, “Thy will be done”, well, that changed everything. And that’s the space I continue to live in now.
I do believe that people can heal themselves of all sorts of diseases, cancer included, but I also know that people die because they wait and they lose precious, precious time. I personally didn’t have the luxury of trying to meditate or cleanse my cancer away (kidding…kind of). I was in a dire situation by the time I even got the first hint that something was wrong and we had to take aggressive action and FAST—as in “yesterday”. But each person’s situation is different and the point is, you do both and more than anything, you do what feels right for you. That’s what I did and that is how I made it to the other side of the treacherous ocean I was called to cross. “Doctor, heal me” alone is a dangerous approach, in my opinion. You have to be an active participant in your care and that was definitely a “difference maker” in my journey (along with a lot of prayers and a TON of support). No one else can do it for you, even those with the best of intentions. On some level, challenges that literally bring you to your knees, cancer or otherwise, are a call to step into your own power and to stand up again—even if it’s on shaky knees. It’s OK to be scared. It means your alive. But it’s not OK to be knocked down and stay there. We have to stir ourselves up, dust ourselves off and get back in the game.
I’m different in a lot of ways now. Actually, it feels as though I’m different in every way, but I know that my essence, what is squeezed in times of trials and stress, is much the same, if not better. I know myself now. I know who I am and who I’m not. I know what I’m about and what I’m really made of. And I play more. I take more risks. I care less about what others think and instead do what feels right for me. I do things that make me happy because, well, that’s enough reason. I say no when it doesn’t. My grasp is looser, not tighter, on the things I love because I now understand love in a completely different way. I listen to myself and look inside when I need answers, using the outside only as my gauge as to how I’m doing because, although I’m beyond blessed and grateful for the treatments I had, the true healing was within. I give my body and God a hug of gratitude every day for the road I’ve walked and the miracle we witnessed because I know now that the challenges, and even the tragedies, of our lives are veiled lessons and gifts used to break us in beautiful ways into the people we were always meant to become—if we let them. I know now that, no matter what it looks like, Something beautiful is happening™.”
© Alyssa Phillips 2011. All Rights Reserved.
This synopsis was written by Alyssa for a feature of her survival story on EmbodiWorks as a way to give other cancer patients hope and inspiration that miracles can and do happen.Tweet