One Year (with the Gift of Death by My Side)

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December 2015

Tonight marks the end of my year with peritoneal cancer, one year since I took myself to the hospital, knowing that something wasn’t right.

I started the morning in the car, only a couple of blocks from the house when I told my husband to turn around so I could take myself to the E.R.  I sent him and my nine year old son on to Disney, went home and took a few hours to relax.  I watched a good movie—the kind that makes you laugh and cry.  Then, I took a long nap in the quiet of an empty house.  A rarity.  When I woke up, I took a shower and drove myself to the hospital.

So, I cannot say I was surprised when they told me they suspected cancer.  It was more of a confirmation of a lingering feeling.

I spent a week in the hospital as they hunted down the cells that would confirm what all the pieces pointed to.  During that time, I had a good deal of time to think, to make decisions, to “come to terms” with everything, most of all myself.

I fundamentally believe in the connection of mind, body, and spirit.  I knew that I had just been barely surviving the prior few years.  The four-year decline of my mother through Acquired Hemophilia and then into Dementia.  Having to get the state to declare her incompetent in order to care of her.  Her eventual death and the grief and guilt of all of it.  The subsequent effects on and changes in my family.  My husband quit his job of 11 years to start a business.  We moved into my childhood home to deal with the life of a paper hoarder in order to untangle the mess of her estate and to renovate the property.  We sold the home we thought we would raise our child in.   Stress and strife became the norm as we tried to make sense of the tectonic shifts that had occurred in our lives.  And, the changes and challenges of an increasingly demoralizing education system within the polarizing political environment made my career, something that had always been a source of pride and inspiration, significantly less-fulfilling.

I was tapped out and unhappy on so many levels.

I had been sandwiched between a young child and an aging parent.  I was doing my best for my family and for my students, but I was drowning and depressed.  I felt like I was failing at all of it because of the perfectionist who lives in my head.  And, ultimately, I felt like I had lost huge pieces of me along the way while at the same time questioning whether I had ever really uncovered the real me from years of trying to measure up to some abstract “ideal” of what I was supposed to want or how I was supposed to act.

And then… Cancer.  Mortality.  Mid-life.

So, as I sat waiting for the diagnosis of cancer, I had the gift of time.  Time to reflect on my life.  Time to think about what parts of my thinking, my lifestyle, my choices had contributed to lowering my immune system such that cancer was welcome to take hold in my body.

And, I had the gift of death on my shoulder.  It was no longer an abstract concept that I could put off to think about another day.  And, the truth is that it was a topic I had spent too much time thinking about as I ushered my mother into her final transition.  Regardless, with the announcement of cancer, Death suddenly and very concretely became present.  A constant companion.

So with the gifts of time and perspective, I focused my mind, body, and spirit on healing.  Knowing what I needed to do to take care of myself never had been the problem; it was doing it.  I realized I could no longer wait to get around to it.  I had to make me the project.  The focus.  I had to change me so that the environment in my body, mind, and spirit would no longer allow cancer.

I’m not a doctor, nor scientist.  And, I am not saying I caused my cancer.  I carry the BRCA2 gene, so my chances of developing many different types of cancer are much higher than in the general population.  But, not everyone who carries the mutation develops cancer.

As someone who had always appreciated Eastern, holistic approaches, I had to get right with myself about using chemo, all sorts of drugs, and surgery as tools of success.  I knew that just as I would be frustrated by someone who dismissed the value of Eastern medicine, I needed to embrace the benefits of Western medicine.  In the end, I came to see it quite simply.

The doctors had to work on the “bad.”  They had to use the tools of Western medicine to eradicate the cancer cells.  And, I had to do my best to magnify the “good.”  I had to use more holistic approaches of the East to give my immune system the best chance it had to kick ass.   (Yes, my inner cancer warrior is most definitely a badass!)

Prior to my diagnosis, I had read Cheryl Strayed’s memoir, Wild:  From Lost to Found on the Pacific Crest Trail.  I had even considered using the book and film in one of my courses. Perhaps that is why the idea of a mountain trek came to my mind when I faced cancer and the journey to come.

I realized it would be harder than anything I had ever done before.  I doubted my ability to endure the pain and physical torment, but I knew that doubt would be my greatest enemy.  So, I needed a clear end goal.

The simple question I had to ask myself was “Why do you want to live? “

That might sound callous or harsh, but I wasn’t delicate with myself.  Death was sitting next to me, and I needed to get real.

I had allowed myself too often to wallow in self-pity or doubt.  Or any one of a myriad of negative emotions.  I had squandered time.  The last few years had pushed me to my limits.  I had doubted my ability, and in the darkest moments, my desire, to continue.

And, then, cancer.

Death was no longer the fantasy of a welcome out but rather the nightmare of a determined assassin.

So, “Do you want to live?”

My answer was “YES!”

But, when I was honest with myself, I had not been living that way, at least not for very long.  I had resolved that 2016 would be the year I focused on HEALTH and had actually begun yoga 3-5 times a week in December of 2015, not waiting for the New Year.  I was pleased that I had stuck with it, worked through my fear and inadequacy, and was seeing progress.

When I was diagnosed, the resolution to focus on HEALTH in 2016 instantly became a mandate.

Focus on my HEALTH.  Live or die.

If I was going to live, I had to give myself the best chance.  I had to focus on my greatest motivation. My son.

In my mind’s eye, I imagined him being kidnapped, taken deep into the Himalayan Mountains.  I saw myself being told that the only way to get him was to walk in and get him myself.  No other options.  Me.  I had to do it.  No excuses.  No negotiations.

I saw cancer as this trek, up and down mountains.   I knew I needed to give myself the best chance of success through my daily choices, but more than anything, if I was going to put my foot on the path, I had to believe I COULD do it.

I decided the cancer would be gone by the time I went to surgery, and I declared that the PET scan to be done prior to surgery would show no cancer. And, I made significant changes, on the physical, mental, and spiritual levels to get there.

I continued with yoga.  Thankfully, I had a month of consistent practice as a foundation when I was diagnosed and I continued that practice until my immunity dropped and I could no longer continue.  The support I got on all levels from my practice and community gave me a belief in my ability to make it through.  To endure.  To get through the hard stuff.  To trust myself.

I reached out to my community of family and friends.  I set up a Facebook group and shared my story.  It gave my husband a place to post updates and to ask for help as he became fully responsible for managing our family and me.   I asked a couple of friends to vet the online research because I realized I could handle bite-size chunks of information that would not cause me to panic. I also had Celebration of Life parties after each round of chemo, before the effects hit.  We dyed our hair teal, the color of ovarian cancer, had a henna party when I went bald, and made beaded jewelry that we could wear and share.

I began eating as much organic as possible and eliminated sugar and other processed foods from my diet.  And, a friend gave me a juicer to get in the most nutrition when I could.  Note:  there is a danger of raw foods and bacteria when cancer has caused reduced immunity; I did this against my doctor’s  and general medical advice.

I listened to music, meditated and did tai chi regularly.  I worked on what “record” I allowed to play in my mind, and journaled to process my thoughts and feelings.  I did my best to remain positive and grateful despite my daily circumstances.

My PET scan on April 1st showed no cancer, and when I had surgery on April 18th, the surgeon and biopsies confirmed that it was gone.  I had had stage 4 peritoneal cancer with ascites meaning my abdomen had been filled with cancerous cells.

I believe that the combination of Western and Eastern approaches, attacking the bad and nurturing the good, is what brought me such an amazing result.

By far, the greatest lesson for me was about myself and my ability to endure.  I came to see my cancer journey as a microcosm of life.  In daily life, the cycles of good and bad, of ease and hardship, are extended over time.  With cancer, the ups and downs, the battles and triumphs, come in rapid succession.  I didn’t have time to forget or doubt my ability to endure.  I had to keep walking.  And having the Grim Reaper as a walking partner turned out to be the motivation of a lifetime.

Amazing video about the healing power of nature at  How Forests Heal People

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December 2016

Through the Looking Glass of Cancer

Here’s an example of what I mean by looking at life through the looking glass of cancer, or I would imagine, through the lens of any illness that makes hearts skip a few beats because mortality is instantly and permanently a heavy shadow in the room for everyone.

Anyone who knows me knows I like to be in control (or at least have the illusion of it) and to direct the course of my life. More realistically, I am captaining a ship on a sea that is moving under much larger influences. As the captain, I must tune into the sea. Connect. Surrender. I can work with it or against it. Only one way has any hope of success.

I ask myself, why is it that “knowing” and “doing” are so far apart. Truthfully I rarely slow down enough to ask myself what I need, much less to give myself what I need. I think of many of us are so busy “managing” day to day that we don’t take the time for ourselves. (Anyone else notice how I just switched from “I” to “We” because I am uncomfortable standing alone with this one! Let me try that again…) I am so busy managing my day to day that I don’t take time to ask myself if I am working toward what I really want or need. Auto-pilot and getting through the necessities of life dominate.

Whether the seas are rough or calm, as the captain, I certainly have influence. I am acutely aware that I don’t get to choose the climate. My control lies in my response. Cancer, midlife, and a up-close view of mortality motivate me to figure out some core stuff, to “manage” and “fight” less and to “flow” and “surrender” more.

Sshheeesh, why does it take a lifetime to figure this stuff out? (Oh yeah, Patience is another big part of this for me that apparently I can’t wait to talk about. Ha! Sarcasm. Doozies.)

Anyway, today’s revelation was that I must give myself permission to ask for what I need directly. I must absolutely ask for that which gives me energy and must graciously refuse that which drains. I must decide consciously what goes into and out of my tank, conserve my reserves for that which serves my highest good and pass on that which depletes. Cancer clarity.

Today, was my first day of chemo, and I spent nine hours in an easy chair as the chemo was administered. Far too much of that time was spent on my phone. Cancer is consuming, in more ways than one!

I am blessed beyond belief to have so many people willing to offer their love and support. Since my diagnosis, I have gotten love messages—by text, email, and phone—every day. They have lifted my spirits and made me know the depths of the support I have. And, of my value to so many.  I think one of the smartest things I have done so far is to create a private Facebook group for those who are willing to trek this terrain with me. That way, I can share info and ask for help quickly and efficiently.

Today was a long day, and I was mentally, physically and emotionally wiped out. I really needed to rest. And, I also realized that I needed to make an honest request of my support team to help me consolidate communications because today, my first day of chemo, I was overwhelmed.   I need one place where I can check in when I can manage it and check out when I can’t.

When I get a text message, I feel obligated to give a much quicker response, so I need my support team to ask general questions—like how I am doing or about how I am doing on the group where I can I answer it once for everyone. Or, personal messages that are not time-sensitive can go through Facebook messenger. That way, I will know my texts are what require a more urgent response.

I know for sure that I need to put down my phone and step away far more often. I need to close my eyes, to breathe, and to relax into my body. I need to slow down to a pace I can manage and be fully present in the moment.

A dear friend came to sit and be with me for a while today. She always makes me laugh, and I treasure her friendship and company. She generously brought lunch for me and Karl, who was also faithfully by my side.

When she arrived, with a delicious warm meal, the nurse had also just hung the first chemo medication.   Everything up until then had been medications to best prepare my body to handle the hard stuff. I had a deep knowing that I needed to be present in my body. Then. That was the time.

So, although it was hard to ask because I feared offending, I asked that she and my husband go find a place to eat together while I took time to meditate. I was proud of myself for asking. I took time to do a lovingkindness meditation. I relaxed and was grateful for the chemo, welcoming it into my body. I blessed it and directed it toward the cancer cells, asking it to go after that which is not serving me. I filled my body with golden light and envisioned the malignancies melting, evaporating away and my healthy cells and organs coated in protection.

The timing sucked for social graces. When they came back, they watched me eat rather than breaking bread together. I knew my friend would not judge me for this request, but the voice in my head is less kind. That self-doubting, self-loathing beast brought up all sorts of guilt, but I am glad I sent her packing. The stronger voice said, “They are your SUPPORT TEAM. They love you and want you to survive. If you believe you need this time, you have to take it. This is your life. You need to honor yourself. Sacrificing isn’t the only way to be polite. You can also politely honor your supportive, loving friends and family by getting clear on what you need and explaining it with kindness and compassion. They want you to survive and thrive. Speak your truth. Tell them what you need.”

Man, those conversations upstairs can be exhausting!

I get that my diagnosis is overwhelming, for me and for all of my loved ones. I completely get it. And, I am so very grateful for all of the compassion, caring and encouragement that has been directed my way. When I think about the outpouring of love my family and I have received over the last two weeks, that is what has brought me to tears. I have been humbled and awe-struck to receive the visible, repeated evidence of how many people think of me so many times every single day. How those messages have lifted and supported me!  How that love has bolstered my spirit!

But I also need to draw a boundary. Cancer cannot be all consuming. It is not my whole story, although I am pretty sure it is going to be a life-changing part.

I began Dr. Bernie Siegel’s Love, Medicine & Miracles: Lessons Learned about Self-Healing From a Surgeon’s Experience with Exceptional Patients. Siegel was mocked by the medical community in the 80s for advocating for the mind-body connections. Research eventually vindicated him. I found a reference to his book on a blog and it “zinged” with me. That’s what I have come to call that intuitive hit that I feel in my knowing when I am supposed to pay attention to something, kind of like that morning that every cell in my being was telling me to get to the ER. Sometimes it is how I pick books. Sometimes it is how I pick people. Anyway, here is a quote from the introduction that struck me…”When we awaken to our mortality we refuse to live the life that is killing us and start living and being our true selves. On a practical level it may mean changing occupations, moving, healing, or ending relationships and bringing meaning and a new attitude into life and working for the right Lord.” Like I said, Clarity.

My journey began on the day I walked into the ER. That is probably inaccurate; the shifts began when my mom began to decline and exploded when she passed.  But this piece is acutely significant now, and the shifts that I have already had to make—mentally, emotionally, and physically–in order to give myself the best chance of survival, are immense. I must cultivate inner peace, joy and well being. I must turn these nebulous ideals into daily practice. While I have always worked on self-development, there are huge pieces (no pun intended) that I have neglected. I can no longer “get to it someday.” And, I have got to stop beating myself up for not getting it sooner. This is my time to learn to trust, to surrender, to float. The day has come. This is the ordained time.

Accept. Trust. Know.