Wednesday, July 18, 2012

Full Time, Full Life

Living is a full time job when every thought, every bite, every step you take may determine how long you live.  Only 2 years ago, I would have scoffed at the idea that a thought could win me more time on this planet, or a bite of food subtract years from my life.  Even after I discovered I had cancer, I was convinced that I had no influence over the disease.  It was pure chance and simple bad luck.  If someone would have suggested that I could influence the course of the disease, I would have responded defensively, “Don’t make me responsible for having cancer.” 

We are not to blame for having a disease, just as we are not generally at fault for getting hit by a car, for falling and breaking a leg, for having a migraine.  But we all know that decisions we make as we drive, walk along the rough mountain trail or go about our daily lives can expose us to more or less risk of these events befalling us.  The idea that you can avoid falling off a cliff by staying off of the cliff in the first place begs the obvious.  Maintaining vigilance while driving will help us swerve out of the way when another car drifts into our lane. Avoiding the triggers that bring on migraines can help us avoid the pain.  Similarly, living a healthy life helps most people avoid cancer.  Staving off death through our actions and our decisions is a realistic filter through which to view our chances at longevity.  The corollary, however, is that we can bring death closer with our actions as well.  Risky lifestyles come to mind – drug use, illegal activities, dangerous jobs.  Does this same formula apply to disease? 

Cancer, for some reason, has a stigma.  The first question a recent diagnosis of cancer evokes is often, “Do you smoke?”  People assume that cancer patients ate too much red meat, or drank too much alcohol throughout their lives.  Some  may have; but others have lived a life free from the high-risk behaviors that can predictably lead to diseases of all sorts.  In contrast, a diagnosis of Alzheimer’s disease doesn’t elicit judgments on the patient’s lifestyle choices.  For some reason, cancer seems more blame-worthy.  Yes, disease can result from lifestyle, which includes the environment in which we choose to live.  But emphasizing that as a cause feels unfair, especially to those of us who developed cancer while living a clean, healthy life.  Clearly people don’t develop diseases purposefully and consciously.  But all diseases do have a basis in the body that hosts them.  Some characteristic of the patient enables the disease to exist and to grow.  The diabetic has a susceptibility to diabetes, a person who suffers chronic infections lacks the biological formula to fend off the invading bacteria.  Even genes, combined before a person is even a person, influence our susceptibility to disease and they undoubtedly belong to each of us individually.  The diseases we develop are linked personally to who we are. 

In the end, there is a cause inside of us that is also a part of us. My body created cancer cells and didn’t kill them off like other people’s bodies do.  It is no one’s fault, but it was my body that created the disease.  It is a hard message to digest.  On the one hand, having lived a completely healthy life, there is nothing I did or didn’t do to get cancer.  I did not choose who I am at the cellular level.  On the other hand, my brain controls my body, telling it which cells to create and which cells to destroy.  I am, in a sense, in charge after all.

It may be misfortune that I was born with this brain that didn’t control its cancer-eating force of white blood cells properly, allowing errant cells to blossom into something villainous inside of me.  Bad luck to be the owner of that brain!  But there is a bright side to this understanding.  If my brain is responsible, my brain has control.  If it has control, it can change the course of the disease.

Abnormal cells develop into cancer cells in everyone throughout their lives.  Most brains recognize them as harmful and exterminate them.  My brain used to do that.  Something happened – an event, a pervasive environmental influence – and my brain got lax in its oversight.  My job now, as owner and caregiver to this brain of mine, is to teach it how to do that again. 

I tend to eye with suspicion untestable theories and beliefs that require a leap of faith.  Anything far-out or ‘cosmic’ in nature is just too existential for uber-practical me.  My natural tendency is to believe the doctors in white coats and do what is expected, what is standard in our modern American society.  In my case, it is following the recommended regimen of intravenous Irinotecan and Avastin infusions once every three weeks.  Even with these dramatic, highly-researched and proven prescriptions, my oncologist has pronounced my cancer incurable by modern methods.  After more than 50 years and millions of dollars of research, cancer still has the medical community baffled.  My doctor’s goals are to prolong my life while maintaining a high quality of life.  I share these goals, but I take them one step further.  I want to rid myself of cancer completely.  Since oncology cannot offer me a complete cure, I have to cure myself.  I have decided to take things into my own hands.  I continue to follow the recommendations of my oncologist, but his drugs are only some of the tools in my arsenal.        

Everything we see, read, and hear about cancer treatment is the result of a strong capital-centered society.  The sausage coming out of the grist makes it through the perilous process of pharmaceutical profit analysis.  The ‘machine’ sluffs off studies for remedies that fail the cost/benefit formula.  Treatments that one can find in one’s own backyard, or in the inner garden of one’s mind, can’t support the research needed to test their efficacy.  These ideas are not unworthy of research, there is simply no profitable way to market them if they did prove to deter cancer.

Some of the cancer-fighting ideas left behind, strewn across the floor in the modern medicine factory, may come across as ‘far out’.  They often involve changing the way you think, eat, and feel – altering the brain, the master of our bodies and the manager of cell activity.  We would all like to know how thinking differently can change the outcome of a Stage IV cancer diagnosis.  Without studies and statistics, we will never have the proof we need to wholeheartedly say if and how these ideas work.  Unfortunately, I literally don’t have time to wait for proof.  If I want to augment my oncologist’s standard chemical prescription, if I want to shoot for the goal of curing my cancer and not just slowing it down, I have to trust in anecdotal evidence, word of mouth and the optimistic support of non-mainstream healing practitioners.  I have to go outside my comfort zone and take a leap of faith.

I am naturally cautious.  I do not fall all over myself to try the latest fad, nor am I so wide-eyed and malleable that I leave myself vulnerable to unsavory snake–oil salesmen.  But in this quest, I have decided to leave the door open to any remedy or treatment available.  From hypnotherapy to ingesting the leaves of a sacred bush in South America, if the treatment is safe and reasonably affordable, I am willing to try it.  There is the risk that, in my search for a cure, I will waste time and money on false remedies and techniques that simply don’t work for me.  Health product salespeople, trying to make a living, may take advantage of my health situation for their own profit without any lasting benefits for me.  But how is that any different from the doctor who makes hundreds of thousands of dollars a year prescribing chemotherapy that just doesn’t work for some people?  I am ready and willing to be made a fool of in my search for the magic combination that will kick-start my immune system and succeed at grinding down the cancer tumors to harmless, dead dust, which the cleaning cells in my body will sweep away and toss out like fur balls from under the couch.  It is a small price to pay for the life that I so long to continue living.

So far, I have investigated homeopathy, hypnotherapy, relationship counseling, vitamins and supplements, naturopathic treatments, exercise, yoga, meditation, massage, physical therapy, touch therapy, sex therapy, acupuncture, hydrotherapy, diet overhauls and positive self-talk.  The only thing from that list that I haven’t now included in my life is homeopathy, which introduces small quantities of dead cancer cells and other poisonous substances into your body to elicit a protective reaction and jump-start your body’s immune response.  It sounded too dangerous, drinking snake venom and hemlock, the drug that killed Socrates.  My first reaction was, “That’s crazy!”  But that was 6 months ago.  My attitude has softened as the cancer continues to stick around.  I still could be convinced with further investigation.

Needless to say, the long list of self-prescribed ‘treatments’ I have added to my weekly regiment take time.  And time is of the essence.  My therapies equate to another full-time job, but some may look strange to observers.  Outside of the multiple appointments, it may appear that I am belly-dancing, hula hooping, listening to recordings and laying out in the sun with my teenaged kids – not persevering through unpleasant medical procedures or tortuous treatments.  That is because the prescriptions I have chosen center on the idea that I have to create an internal environment that convinces my body to work hard for my survival. 

“No more suicidal cellular laissez faire”, I tell my brain.  

My treatments focus on improving how I think, eat and feel.  I see an acupuncturist to realign my inner energies.  I meditate daily to focus my mind on healing and destroying the tumors in my body.  I work with a therapist to uncover the relationships and responsibilities that may be beating down my immune system.  My subconscious receives messages of healing and confidence from my hypnotherapist.  Every single thing I put in my mouth has an anti-cancer property, which means now I eat very selectively and supplement my diet with naturally-occurring, immune-bolstering plants, oils and herbs.  Believe it or not, I follow an extreme diet, where every bite fights cancer and I don’t miss the sugar, the red meat, the processed carbs or the milk anymore.  I am worth it.  It has its positive side effects as well – I weigh the same as I did in high school.

Moreover, my number-one prescription is to be kind to myself, to love myself, to take time for myself and to care for my body by caring for my brain.  I try to surround myself with love and joy and freedom of expression.  What does it mean to be kind to oneself?  I started with giving myself permission to do whatever it takes to survive – from sleeping late on a work day, to living as a hermit on a mountaintop in Africa.  There is no better way to prove to myself that my life is valuable than by promising myself I will sacrifice anything for it.  I try to enjoy myself every minute.  I respect myself: even during those dark moments of negativity, I recognize that those are my feelings for the moment, I accept them for what they are and then try to move back into a place of joy and love.

For a historically pragmatic person, these changes are huge.  I have tiptoed into a new way of looking at life now that it is painfully precious and precarious.  I find myself staring up to the sun on a busy street corner, open arms, feeling the healing warmth of the earth’s very own life source on my face and I am not worried about the throngs of downtown lunchers staring.  My mind has both blossomed and softened, inviting ideas and practices that 2 years ago I would have written off as quackery.  A judgmental attitude has no place here, where every minute is an opportunity to extend my life. I risk sounding existential myself when I say that I believe that finding love and applying it liberally inside and out is the foundation for my eventual cure.  It is the most important prescription of all and needs to be applied every minute of every day.  My calendar is booked!

Wednesday, July 4, 2012

Nice to Meet You

It is two a.m.  The pain in my back continues to throb as if I had withstood a clubbing by some massive, repugnant ogre in a medieval battle.  It is unlike the kind of pain I am familiar with – that of elbows to the solar plexus, sprained ankles and black eyes dished out by sturdy, thick-legged women on the rugby pitch (some of them not unlike ogres themselves).  Rugby pains are sharp and surprising.  This pain is a locked room filling slowly with murky water.  The water is too black to perceive what evil creatures might be lurking below the surface.  The fear of what lies there rivals the unpleasant sensations themselves.  It sifts through my tissues and permeates me, encompassing cell by cell in its steady, confident rise to the inevitable domination of my entire body.  I cower with my cheek up against a smooth stone wall (am I in the dungeon?), huddled for the last hour in a crouch, knees spread to accommodate the large, round incubation chamber of a small creature trying to come into this world.

My first labor went on like this for hours.  Twenty six point two of them to be exact.  After 24 hours of sleeplessness, my body burning calories at the rate of a marathon runner, my head bobbed and lolled on my neck like a dying yo-yo on a string.  My eyes rolled back in their sockets.  When the doctor visited me in my hospital room every few hours, I tried to pay attention to what were probably important instructions, but my focus wavered between dreams of sleep, the mesmerizing shiny blur flashing from her stethoscope and the sudden violent zigzag of contractions that ripped through my consciousness and stopped up my ears for 45 seconds every 2.5 minutes.  After each contraction, my chin fell to my chest again, my neck too worn out from its electrified state of rigid attention moments earlier to support the heaviness of my cranium.  I was drunk with fatigue, sleeping in one minute increments. 

The contractions had started in the late afternoon, and, as our childbirth instructor predicted, they were mild and distant.  They felt like a warm buzz, an inflammation or a stirring in my pubic bones, like they were thinking about spreading.  Once I became aware of the contractions, I knew it was time to take a nap while I still could.  But my husband, anxious to ensure he wouldn’t get stuck delivering a baby in the back seat of the Honda, insisted that we go to the hospital early.  Almost instantly upon arrival, after a particularly efficient nurse took us into a private room and stuck her finger up my vagina to see how much my cervix was dilated, they sent us away.  I wasn’t far enough along to justify taking up a hospital room and adding to their workload.  But soon the contractions were coming closer together and the pain was more noticeable.  I thought perhaps we should stay and see if they developed into something more noteworthy.   

I tried to rest, sitting in the hospital waiting room, but no position was comfortable.  I stalked the maternity hall for hours.  Contractions started coming every 7 minutes.  Then every five.  My strides downgraded to a modest walk.  My walk shriveled into short spurts of uncertain movement, followed by long pauses that had me holding onto the wall.  All of a sudden, I threw up.  Luckily, I was standing next to a janitor’s sink when the bile came bubbling up.  The nagging inflammation-feeling cracked out of its shell and tendrils of pulsing soreness crept out, sending thin, green suckers along my spine and pelvis.  The sensations thickened and grew, leafing out and climbing heartily on the now-weak trellis of my bones.  My body moved on slow-motion auto-pilot as I staggered from one patient’s door to the next.  Contractions came closer and closer. 

Finally, the nurses decided I was ready for a room.  I checked in, officially this time, but the labor didn’t progress.  The night wore on.  I wore a path in the linoleum as I circled the ward, now shuffling a paltry 12" every second.  I moved like an ailing 92 year old, hunched over, holding my back, groaning, then shuffling on in the hopes that the movement would shake the baby loose.  Soon, I was groaning and holding my back every 2.5 minutes.  The hours crawled like a ragged man in the desert, dying of thirst.  I succumbed to the hospital bed, but found no solace in the short, pain-free intervals.  Every time I would drift into blissful sleep, I would immediately awaken to the wrenching twist of muscles pulling impossibly tight, bones shifting.  Every time, I called out to my husband, the time-keeper, “Contraction!”  He got little more sleep than I did. 

Why didn’t the baby come?  My body was holding back, not ready to take the final step in this life-altering commitment my husband and I had made nine months earlier in a pre-calculated month of arduous love-making.  My mind had been willing, but now my body was rebelling.  What was there to be afraid of?

What a silly question!  There was so very much to be afraid of, from the unknown pain of delivery, to the unknown personality of the person coming to stay.  What if she didn’t like me?  What if he wasn’t what I expected?  I was growing a life that was totally independent from my own.  Giving the baby that last bit of free rein took away the control that, up until this point, I felt I had.  I had given up alcohol.  I had eaten healthy foods and exercised regularly throughout the pregnancy.  Even yesterday, I had run 2 miles to encourage my very tardy child to make her appearance before the doctor performed an intervention, scheduled for Tuesday.  All this time I had been in charge of the healthy growth and development of a part of me – I imaged the baby as a miniature me - but now that the shit was hitting the fan, my subconscious didn’t want to let go of that control, that ownership.  I didn’t want him to be his own person, as inevitable as that obviously was. 

The running helped.  Or maybe it was the looming threat of a procedure to induce labor that kicked my resistance out of the way and got the ball rolling.  Labor started.  But now I was back to my old tricks again, holding back, retaining my power-position, trying to stay in the driver’s seat even as the baby pulled at the wheel and dug her heels in behind my ribs.  A battle was playing out between us in guts and muscles.  He wanted out.  I wanted him to remain mine.

The doctor arrived at my bedside.  She stood watching me, probably entertained by how closely I resembled the possessed girl in ‘The Exorcist’.  I sensed her presence more than saw or heard her, but I did make an effort to receive whatever message she was delivering.  I leaned toward her.  My eyelids drooped, my mouth hung slack.  I bet I drooled. 

“…give…shot…drug…get labor moving,” were the words that reached my brain.  Apparently, they were getting impatient with me and wanted me out of there, so they were going to inject something, somewhere, that would make the contractions come more forcefully.  The goal was to complete the dilation and start in on the actual delivery of this little bundle of thorns.  

The baby must have heard it too.  As the doctor turned to leave, a contraction ripped through me, strong enough to take my breath away.  My eyes flew open wide and I gasped.  Progress was being made!  Our collective subconscious was working together to avoid that injection, or else the baby was simply stronger than me and had won the battle to be born.  A few more big spasms pulled me apart like an old-fashioned conquistador quartering, and suddenly, I was wide awake, feeling an urgent need to push.   

Strangely, the prior pain disappeared and I was overcome with a vomit-like heaving, but it wasn’t food coming up, it was baby coming down.  The nurse told me to reach down between my legs and touch the place that used to be loose folds of skin.  I felt a hard, round protrusion through my taut flesh – so close!  The previous 26.2 hours had been spent stretching back my cervix, shortening my vaginal canal and unzipping my baggage full of repressed control issues.  Now it was show time, and the baby was centimeters from joining us in the open air, separated from the world only by the depth of my skin.

The doctor put on her gloves and poked around my nether regions.

“Push now,” she instructed, but I didn’t need any help knowing what to do.  The urge was as natural and as impossible to ignore as a bowel movement.  I reveled in this new feeling, completely different from the permeating ache of before.  Each pause between uterine contractions allowed me to store up energy and willpower.  When the contraction came, I was ready and I actually enjoyed joining in; I couldn’t not push.  The baby and I were working together to free her from her cage.  I was letting him escape my absolute control.  I had decided that she could be her own person after all.

With only five or six contractions, in a short 9 minutes, my first child clambered out of my body and into her own existence, separate from me, an individual.  The delivery brought the kind of pain I was used to.  “Skid marks” the doctor called the scrapes and the small rips in the vaginal tissue caused by the fast stretch of such a short delivery.  It felt like skinning your knee.

Amongst the howls of new lungs functioning for the first time, the doctor brought my baby up to my eye level. 

“It’s a girl,” I said, sheepishly proud of what we had accomplished, my new daughter and I.  Her inflamed, sticky body still bore the bloody rights of passage.  Her mouth was open in a long wail.  She was gangly and red.  She looked like an old homeless man, with her long-soaked, pickled flesh and her hair full of mucusy detritus.  She was a person, her own beautiful person, and I had helped her get to this point.  The scream drove home that I was no longer in charge.  This baby girl made her own decisions, had her own personality and would live her own life  The realization humbled me.  From here on out, my job is to enjoy her and care for her.  Her job is to discover who she is going to be.