GIST Support International - logo

GIST Support International - Lynn's Story
GIST Imagery

Lynn's Story   -   Sangha

by Lynn Whelan

Everything You Ever Wanted To Know About Impermanence Of The Body But Were Afraid To Ask 

 

March 2011

Victor Frankel wrote, “To live is to suffer; to survive is to find meaning in the suffering”.

This is not going to be primarily about me. My hope, my intention, is that what I am experiencing through this thing called cancer can teach me and perhaps be a vehicle for you as well to be able to WAKE UP sooner rather then later. Of all the multitude of experiences I have had in my 62 years of life..loss of a parent, coming out as a lesbian, having my heart sufficiently broken, seeing a dear pet thru illness and death..nothing, nothing has shaken my foundation like being told you have an incurable form of cancer.

Lynn and her dog Tai with Santa

 

In the midst of living what I thought was a reasonably healthy lifestyle..eating relatively well, exercising regularly, working at a fulfilling job.. I was reminded about the overriding principle of impermanence. In early February of last year I suddenly experienced severe pain in the right side of my abdomen. Within a few days I had undergone a vast array of medicine’s finest diagnostic tests. While awaiting the results I drew from every Buddhist Practice I knew.  I can’t tell you how regretful I was then and am now to not have practiced more in the past..to not have practiced better in the past..to not have become the yogi of yogis. So my first lesson in all of this is: DO IT NOW! Training the mind, harnessing the inner resources to practice patience, reining in those impulses that propel our minds into the future instead of resting in the present moment – all these skills are much easier to develop when not faced with sitting in the midst of a storm.

But then, you know this. I knew this too. At the very least, I am so grateful to have cultivated the ability to come back to the breath as it was all I could do when my partner and I sat across from my doctor, who had received the test results and announced, “Lynn, things are really a mess! You have a 16 cm tumor in your abdomen sitting right up against your descending aorta as well as 8 or 9 large metastatic tumors in your liver. There are spots that are questionable in your spleen and right lung.” That’s enough to seriously take one’s breath away –but the only way I kept from literally fainting on the floor of the examining room in my doctor's office was to feel my breath and focus on one breath at a time.

Pema Chodron says, “The present moment is a pretty vulnerable place and can be very unnerving and completely tender all at the same time”. I certainly do know exactly what she meant. She also wrote “Letting there be room for not knowing is the most important thing of all. To stay with the shakiness .. with the feeling of hopelessness .. that is the path of true awakening. Stick with the uncertainty … this is the spiritual path .. don’t bail out on yourself .. this is the path of the warrior”.

As I sat in that doctor’s office I was struck by the disappearance of my normal self. I am usually fascinated by anything medical .. you name it .. I’m there .. I gobble it up.. I spit it out and I gobble up some more. I’ve observed numerous surgeries from leg amputations to my own breast lumpectomy years ago done under local anesthetic in order for me to watch. But I’ll tell you, that day and for many days and weeks that followed I wanted no part of the medical details of my own body ... not reading the CT scan report, not looking at the CD of the scan itself. I had all I could do to just breathe to keep from being overwhelmed by shock and fear. Fear about my prognosis, fear that this enormous tumor would rupture any minute; fear that this alien was growing by the moment and would press against the descending aorta and cut off circulation to my right leg causing permanent damage. Sometimes we have some kind of perspective and sometimes we have none. Just being in that moment was all the perspective I could manage.

 

GIST

I was referred to a surgeon in San Francisco. When I was forced to look at the scan of this enormous tumor in my gut and all the growths filling my liver, I had to turn away. I had all I could do to just continue breathing. A needle biopsy was to be done in the next few days. The doctor who ordered the procedure speculated that I would be diagnosed with 1 of 5 different choices of metastatic cancers: pancreatic, ovarian, colon, lung or a very rare cancer called a GIST (Gastro Intestinal Stromal Tumor). Such a splendid menu of cancers I had to choose from as I pondered my potential demise over and over during another long waiting period as the needle biopsy was done and the pathology results were being analyzed!

The mind has a marvelous way of filling itself with all the most horrible scenarios possible and my mind got very busy doing just that..weighing and measuring one type of deadly cancer against the other ... picturing the process of my decay physically and financially. And in between each story I would wake up even if just very momentarily.

Pema Chodron’s book “When Things Fall Apart” became my bible … I had it in my clutches everywhere I went. She wrote “When we allow ourselves to feel fear – fundamental fear, we no longer have to devise a thousand ways to run from it – we experience a kind of freedom and learn that fear is only a wall to pass thru on the way to the self. If you refuse to acknowledge its presence you give it power. We can accept its presence, sit with it, and make it our friend and it loses its solidity, its intense grip.” She also wrote, “Unless you experience fear, you will never experience fearlessness”.

I certainly was feeling the fear … fearlessness had yet to knock on my door.

Patience was never my strong suit and so this waiting thing was a huge challenge. And then the phone call came, “Hello Lynn, this is Dr. Richards, I have the biopsy results.” I sat myself down, closed my eyes and focused on the breath again as I listened to the words, “You have that rare cancer that I told you about, a GIST. As you know this has metastized to numerous areas in the liver. But of all the choices I gave you, this is the best. I would however recommend you not research this on the internet, as it will scare the life out of you! You can talk to your oncologist about treatment and surgery will be down the road.”

 

Oncologist?

YOUR oncologist … MYoncologist? I’m not supposed to have an oncologist. I’m a healthy, vibrant woman who has been very conscious of how to continue to be healthy and vibrant! My entire sense of my self…that big ugly thing called ego … was so wrapped up in my image as fit and healthy. As Thich Nhat Hanh wrote, “Accepting change is such a challenge. During a lifetime we are involved in a continual reincarnation of selves. It is imperative that we learn to accept how things are NOW. We may never get another chance to see the self who looks back from the mirror TODAY. By tomorrow, who knows. It is a constant parade of changes! Some will be exciting, making us want to grab our baton, jump in front of the band and shout for joy! Other changes will more closely resemble a funeral cortege”. He goes on to say, “Befriending change is an important philosophy to work toward..accepting change, committing to making the best of it, realizing that it forces us to grow, to become more flexible and resilient.”

Dr. Oliver Sacks, famed neurologist and author of such books as “The Man Who Mistook his Wife for a Hat” and “Awakenings” has recently been diagnosed with melanoma of the inner eye and in his new book, “The Mind’s Eye” he described my sentiments precisely when he was faced with his diagnosis, “I felt a terrified child inside me screaming for help.”

Ah, transcending the fear of the unknown…that has been the ultimate challenge!

I began doing Tonglen practice, breathing in the fear and anxiety of the whole world and breathing out ease and comfort. I have been amazed to find how such practice lowers my own fear and anxiety and brings me a sense of community with those who suffer similarly.

My partner, Linda, who held my hand literally and figuratively thru all of the medical appointments during the early days of this journey, sat with me across from my new doctor ... MYoncologist. First came the good news … there is no chemo for this cancer, but there is  a drug that has been developed within the last 10 years to treat this type of sarcoma — it is called Gleevec and it is effective in about 80% of cases. We will see if you are among the 80%. If your tumors are responsive to it, they will shrink to some extent and then you will have surgery to debulk the majority of the mass and you may be a candidate for liver resection as well. Then came the bad news: this cancer is not curable but the best case scenario is that it can be MANAGED. I did not ask what that meant. I did not ask for life expectancy percentages. To be honest, I did not want to know. I was still digesting that I had the BEST kind of cancer I had to choose from and that this cancer is not curable. Once again, I was caught in a blur of fear, overwhelm and all I could do was, you guessed it, breathe.

 

Breathe

Are you seeing there is a theme here? A consistent thread? The only lifeline I could grab was the breath. When the waters got really choppy ... when the swells threatened to overtake me completely ... all I could think about was taking the next breath ... and then the next. So of course, one of my suggestions to you..is to practice, practice, practice! Watch that breath as if your life depends on it!!!

Because of mindfulness we see things as they arise. Because of our understanding we don’t have to buy into the reactive chain of emotions..understanding how they run us around in circles, increase our pain, increase our confusion, making things grow from miniscule into expansive ... rather we can leave things minute..they can stay tiny, or at least they can stay the size they are and not expand into larger-then- life monsters. The more we witness the emotional chain reactions and understand how they work, the easier it is to refrain ... to stay awake ... to slow down and notice. Behind all the chatter, the worrying, the planning, the wishing and the wanting ... wisdom mind is always there.

 

Gleevec

Much has happened since those first 2 weeks  … having blood drawn frequently and seeing MY oncologist often and gradually trying to build up to the ideal level of the Gleevec – 400 mg. The path has been frustrating and scary…experiencing the side-effects of the medication including a full body rash from this life-saving drug, going on Prednisone and then repeating the slow build up again. I ultimately have been able to tolerate 300 mg, just slightly below the ideal level. The shrinkage of tumor size and consistency has been remarkable … the primary tumor has gone from 16 cm to 4. The liver tumors are unchanged in size but are all liquefied instead of solid at this time.

I had been looking forward with mixed emotions to the major surgery I had planned to undergo and which UCSF told me would give me the best chance. The next piece of shocking news came when the surgeon at UCSF declared my condition inoperable due to the location of the tumors. Another roller coaster of emotions began …. I thought surgery in conjunction with Gleevec was my best chance for survival for at least a while. Then my own oncologist revealed to me that he had taken my case to a conference of specialists and the agreement was that surgery was/is not the best option for me even if my condition was operable. So, faced with two very disparate medical opinions, a very dear friend of mine helped me get into another specialist and off to Stanford I went for a 3rd opinion. Dr. Fisher at Stanford agreed with my local oncologist that surgery would not increase my chance of dealing with this disease. They both also agreed on more bad news,  that a large percentage of patients on Gleevec become resistant to it and the tumors begin to grow again. The hope is that other drugs, sons of Gleevec as one doctor calls them, might be effective for a piece of time and that the side effects of these drugs may be tolerable.

Dr. Oliver Sacks again wrote: “Having cancer, any cancer, means an instant change in status. The diagnosis is a threshold beyond which lies a lifetime, however long or short, of tests, treatments and vigilance and always, whether conscious or unconscious, of a life filled with reservation about the future.”

 

My Life Now

So that is basically where my life is now ... taking a drug that could and most likely will stop working at any moment but that for now has very tolerable side effects ... having blood work done every 6 weeks now to monitor the side effects ... attempting to boost my health with the help of an extraordinary woman practitioner of Regenesis - an alternative treatment harnessing healing energy, having CT scans every 3-4 months to watch those tumors for any signs of growth or change..waiting to start to glow in the dark from all the radiation, and in the meantime living as normal a life as possible putting cancer in a corner of that life not as the centerpiece.

My medicine cabinet which I used to proudly fill with only vitamins, herbs and beauty care products is now filled with prescriptions for this that and the other possible side-effect. You know you are in trouble when you and the local pharmacist are on a first name basis! This is not the kind of relationship I ever wanted with Colon at Safeway's pharmacy counter! But if these are the only things I have to complain about, I am one lucky camper!

I have fear about what will happen when or if this drug stops working for me and any major surgery that may have to take place if things start to grow and obstruct vital organs. I have anxiety about how I may or may not have a job after the months I would need to recuperate after surgery let alone whether I will have a normally functioning body. I have concerns about the financial devastation that this kind of situation causes.

 

A Strange Gift

But when I start to tally up all that this trauma has brought to my life I occasionally smile. I used to be struck when patients of mine would call a life-changing illness or injury a gift. I now understand. That gift has been bestowed upon me and the love and support I have received as a result of it..from this sangha, from extended family who I hadn't seen in years who are now vital parts of my life, to friends, neighbors and co-workers..all have truly lifted me up and carried me along. The books, tapes and CDs loaned to me to help inspire me ... the care packages, emails and cards ... the offers to help me in any number of ways, the medical research done for me by a dear friend of mine when I was frozen with fear, the psychotherapy sessions paid for by that same friend when I needed help the most; the techniques Ellie shared with me to deal with anxiety … the Tibetan prayer shawl given to me by Marilyn ... the financial assistance given to me by Trudy and a co-worker of mine who I barely knew to help cover the cost of the Gleevec which rang in at over $4000. dollars a month until I got on their patient assistance program … the phone number that Melanie Berzon gave me of a woman in New York who has lived 10 years with this incurable disease ... the instruction in a Tibetan visualization practice taught to me by my brother, all have played such a vital part in keeping me afloat.

My partner Linda and I use to live apart. When I was diagnosed, with the help of our families and Trudy, Linda moved in with me not knowing how numbered my days might be and whether those days might require intense caregiving in the very near future. That to me is a testimonial to unconditional love and generosity for which I will be eternally grateful.  I know this is starting to sound like an acceptance speech at the Academy Awards but I just have had so many people to thank and words don’t begin to express my deepest appreciation for all of the angels in my life.

 

Back to my Childhood

Another fascinating aspect to all of this is that I found it made me harken back to the spirituality of my childhood ... something pulled at me to re-explore my relationship with Christianity ... not the Catholicism in which I was raised but something different. I wasn't sure what, but it pulled on my heartstrings and called out my name.

Thich Naht Hanh had always encouraged American Buddhists to seek out their religion of origin but I had not done it. Timing is everything they say, and sure enough last April I read in the SF Chronicle about a church in Berkeley whose pastor is HIV+ and his community is a blend of all ethnicities, all beliefs and all sexual orientations. It is called NEW SPIRIT Community Church and it has felt like coming home but not to the intolerance or the dogmatism of my previous experiences..it is just about love and kindness, and open-heartedness and open mindedness ... many of the very things that brought me to Buddhist practice.

One of the only constants thru all of this is the fact that whether we like what our reality is right now or not, we find out that nothing ever goes away until it has taught us what we need to know - will I become more bitter and resentful or will I soften? Will I become wiser or more ignorant? More critical or more generous? I can use it as an opportunity – I can become inquisitive about what is happening not just to my body but to my spirit ... instead of struggling to regain my concept of who I was. I can tap into the not knowing mind ... that basic wisdom mind, and learn to accept and, yes, maybe even enjoy the unknown.

I realize this journey has only begun and there are many lessons I have yet to learn that await me still – but the biggest lesson to date that I want to leave you with is this: don’t underestimate the power of your spirit … feed it daily … for it will sustain you in the toughest of times when you need to pull from your deepest reserves. Whether Buddhist practices or other forms of spirituality speak to you … listen …listen very carefully.

[copyright 2011 by Lynn Whelan, used with permission]

 

The Guest House

RUMI

 This being human is a guest house.

Every morning a new arrival.

 

A joy, a depression, a meanness,

some momentary awareness comes

as an unexpected visitor.

 

Welcome and entertain them all!

Even if they're a crowd of sorrows,

who violently sweep your house

empty of its furniture,

still, treat each guest honorably.

He may be clearing you out

for some new delight.

 

The dark thought, the shame, the malice,

meet them at the door laughing,

and invite them in.

 

Be grateful for whoever comes,

because each has been sent

as a guide from beyond.

 

 

 



back to top