Something much harder than cancer will happen.

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“You have cancer”

More than once in my life I have heard these words. Everyone from my beloved grandma with breast cancer to my father with Hodgkins and finally the day it was said to me.

I know it is terrible and difficult news that your mind is railing against while repeating it on a never ending loop inside the part of your skull that can carry words in an echo chamber. It really is shattering. But it is not the worst thing that is going to happen. Not by a long shot. No, something far more horrible is within reach.

You will lose friends and/or family.

Take a deep breath.

Every article, essay or story about cancer starts with this warning. It should be added to every chronic illness as well. No matter how many times I read these words, I am still unprepared to deal with the reality of someone either openly or covertly ending their relationship with me because I have cancer.

It had happened to my first husband when he was diagnosed with end stage pancreatic-liver cancer. It is never the people you expect to ditch you. Nope. It’s some of the ones who you felt sure about. The ones who swore at sometime, somewhere, to be with you through thick or thin. Like many things, oaths, the life blood of my Celtic heritage aren’t what they use to be. It will hurt when the relationship withers and dies. There is nothing you can do about that. Except to acknowledge it and live through the deep sadness and betrayal of abandonment. Oh, you will feel betrayed, hurt and angry. I recommend singing soul wrenching music, sweating out your emotions through dancing if you are able and take up drumming. All three of these give you a physical outlet to pound something without hurting anyone. The anger moves on. The betrayals, I am still working on.

For anyone contemplating leaving a comment about forgiveness, please stop yourself. I won’t publish the comment. When a friend or family member walks out on you, it is normal to be angry and hurt. You should not give them a free second chance to hurt and abandon you. I loathe “forgiveness culture” where the ultimate absurdity is to forgive yourself. I have a litmus test for “pop” psychology and New Age-isms. If my grandmother never used an idea like “self forgiveness” and would have called it ridiculous, it is just that. Ridiculous. Getting cancer is NOT something I need to forgive myself for. Having a lousy friend or weak family member is not about me either. It’s on them to find forgiveness. It is not on me to pass out “I forgive you’s,” with the bizarre notion that it is beneficial for ME to forgive THEM. It’s long overdue to call BS on that practice. I have not once, not ever, felt better, freer or more loving after forgiving someone who hurt me without any effort on their part to correct the transgression.

If they want to ask for my forgiveness, that’s a whole different thing. It always starts with fourteen words, from them, “I was wrong. I am sorry. What can I do to make this right?” Just so you know, these are the words I use when it has been me who hurt someone else. It is only the start. Forgiveness should be earned, just like trust. Mostly because trust has been broken when you hurt someone.

Also for anyone who felt the need to leave a friend or relative who got cancer or any other illness please don’t leave your reasons on this post. I won’t approve those either. There are a minuscule of necessary exceptions for when leaving is appropriate. Sometimes Dementia and Alzheimer’s fit that exception. But, please, they are exceptions, not the rule. You may have had equally difficult problems or worse things going on in your own life when your friend got sick or when they had yet another complication to their serious illness. We all get overwhelmed. Here’s the thing, my cancer really is all about me. I own it. I share when I am asked by my Neuroendocrine cancer/carcinoid community or an individual asks about it, or I need to vent. I vent infrequently these days. So, when I hear, “I can not handle your cancer, it’s just too hard for me. I can’t be your friend anymore,” I want to know in what way are they handling MY cancer. I checked. It is impossible to give anyone else my cancer to handle for me.

Last are the ones who will say they are only interested in relationships that are reciprocal. Well, WOW. Not once in my life has any relationship been completely reciprocal at all times. Sometimes I am giving more time and energy and sometimes it is the other person doing that, cancer or no cancer. Life does not balance out every second of the day. Sometimes it doesn’t balance out for months or even years. I am not a good score keeper on this front. Perhaps that is one of the secrets of success to my beloved husband’s and my marriage. We never keep score and we are co-conspirators for life, facing the world together with our hands intertwined shoulder to shoulder. Not once have we ever talked about reciprocation or equity. We each do our best for us everyday, however much that is.

What do I or anyone with an illness want? How about just stick around. We may be gone for long bouts of time and that can be annoying and frustrating. My cancer is rare, slow growing and currently incurable. With my current standing, it is possible for me to live a long time. I could also be sick in varying degrees of seriousness for much of that time due to my cancer or other diseases. I have more than one illness because…well…the universe is not fair. We who are ill, want to be welcomed to join you when we physically can. We want to know that you have the resilience to let us be gone when our ilłness forces us to be unavailable. It is the ultimate gift you can give us. My best example is this: We don’t walk out on life because winter lasts longer than we like. When spring comes we are happy to just have it visit us once again. My illness is like that winter that can drag on for too long or reappears after spring has started. It is very inconvenient and unsettling. I know the vast majority of my friends stick out those wintery days with the surety that spring will come and put an end to winter, hoping that summer will be even sweeter and easier. I would ask for the same patience regarding the weather of mine or anyone’s illness.

For every friend and family member who has stuck it out with chronically or long diagnosed sick people, I thank you with all my heart and soul. You did not demand reciprocity. Instead you gave real love, compassion and the open understanding that welcomes us when we are able and gently waits for us when we are unable. Being this kind of friend is rare and wonderful. I believe it reveals the best part of people and life.

Blessings,
Bridget Robertson

Dedicated To All ZEBRAS!

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The mascot for NET Carcinoid/Carcinoid Syndrome is zebras. I belong to three Facebook NET Carcinoid/Carcinoid Syndrome groups. Not all Facebook space is created equal. I have found that which can be elusive for some people, real support and help as I enter what I call “The Holy Gates” of my Carcinoid groups. Some make posts, others comment at times, for whatever reason, at times people just read through the many threads. I promise, I can feel each and every zebra no matter how much or how little they actively contribute.

When one of us is accepted into a new drug or treatment trial or has a successful procedure we all celebrate. I know some people believe Pharma and doctors are only in it for the money. I know some think modern medicine gets it wrong. Please consider, that when your very life is on the line, even previous held beliefs matter much less than being given options. So, I cheer every zebra, no matter what they choose. If that is where they see their best chance, I am behind them all the way. If one is going to an ER for any one of the many serious problems that comes with this cancer or syndrome, or are scheduled for a difficult procedure(s) or having hard times, the herd will hold them up. When one dies, we all mourn, even if we don’t know their name or the details. Boundaries are respected and no one judges where you are on your journey. There is always an outpouring of care and compassion as we wind our way through the pain, procedures, tests, unknowns and the medical systems throughout the world. We light candles, say prayers, share our experiences, get resources, find ways to better our lives and bless each other everyday.

We are a diverse and worldwide zebra herd and family. We also have many shared experiences. Many have other illnesses besides Carcinoids. Most have had to fire several doctors along the way. I was officially diagnosed 10 years ago this month. I have had NET Carcinoid/ Carcinoid Syndrome for far longer than that. I have had other illnesses since my childhood, since birth. A few decades back I had a some good years. All. In. A. Row. These days I look forward to having a good day. Heck, I’ll take several hours strung together. My diagnosis came by way of a dermatologist working to eliminate my stubborn and extreme “Rosacea”. I was certain that while painful, it was a minor problem. He mentioned that he had heard of something called Carcinoid Syndrome and thought it was a gastric condition. My gastroenterologist, had been unsuccessfully treating me for “IBS” for over ten years, because it wasn’t IBS. It was all part of my Carcinoid Syndrome. Fortunately, the dermatologist ordered my first 5HIAA. Just one of a long list of tests I had and have done.  It would be months before I even got to see an oncologist. Like many, my journey has had its fair share of difficulties. My first really big hurdle came when a new insurance plan denied coverage for my treatment after I had been receiving it for three years, saying it was unreasonable and without a specific pathology. My oncologist who while claiming to be an expert in Carcinoids, was not, shrugged and said there was nothing he could do. He was retiring. It was only after quite a bit of time and when I got a new primary care doctor, that treatment resumed. He was more of an expert than any doctor I had met to that point. He knew, and was the first to tell me, that Carcinoids was NOT benign and that having an unknown primary did not change the fact that this is a very serious cancer that could spread ( metastasize) anywhere. He filled out, in detail, extensive insurance forms and wrote in depth letters. I got my treatment back. He and one other doctor helped get me a few new doctors. He is also very rare in the sea of medical professionals that we zebras must wade through to get diagnosis and treatment.

While I understand the wisdom of taking control of your health, medical systems are designed to make compliant and quiet patients. I suggest reading Jean Shinolda Bolen’s book “Close To the Bone” to get an accurate description of how that plays out. We are rarely those compliant patients. We question doctors extensively. We change doctors when needed. We spend our days looking over information, researching on the Internet, getting data, learning medical language, getting reassurance and advice from each other, looking for any alternative treatments and doing every spiritual, and emotional healing practice that we find useful and palatable. We are very informed patients on all manners of healing. We are also making our lives as rich as possible. We do what we can each day to be about the business of living.

I never forget that I am very lucky. I have a spouse who loves me and tirelessly helps me with what would be simple tasks for many people. I have friends and family that respond to my posts and blogs with a great deal of encouragement, compassion and even fantastic humor. They see all of me and accept my diseases right along with me. Some zebras never tell anyone, anywhere about their disease especially on Social Media. Others make posts that get no response. We, zebras work to understand. We know that people want happy, positive posts. We know some will be irritated by our updates on our health. We know our disease frightens some. It frightens us too, along the way. And we don’t have a way to disconnect it from our bodies. Most all of us zebras have had people disappear completely without giving any reason, including family. We feel the real sting and hurt when that happens. I have to say this is a flaw of mine. I am not one to forgive people who walk out on sick people. I don’t mean just me. I mean anyone who is sick. Nor, do I apologize for this flaw. I don’t intend to change it. If others want to forgive…feel free. You MAY have better angels than I do. I have no patience for this behavior.

I would ask that today to think about NET Carcinoids which is rarely given much attention. Also, consider everyone including yourself, if it applies, that is having to cope with chronic and life threatening illness. Be gentle with the sick. We are not lacking positive thoughts or vision. A post that Clarrisa Pinkola Estes made recently on Facebook went into great detail asking everyone to withhold judgement and speech about simplistic “cause and effect” or blaming sick people. We all know that some who do all the healthy things, are generous and kind, still get sick and die young. We all know a few who do everything unhealthy, can be mean, selfish and horrible who live well and into old age. I avoid simplistic answers and ten second memes that spout them. I think people are more complex. I think the “cause” of most things is complicated and multifold. And please, if you need support, I encourage you to join a group that does just that. I consider my fellow zebras and our groups “Sacred Ground”.

I also want to thank all of you, my friends, family and fellow zebras. Sometimes I get exhausted, angry, bitter, feel bewildered, betrayed and occasionally despair. It is often the simple gestures that matter most. Many of you pm me songs, stickers, pictures, wonderful messages or leave a comment on one of my posts. I hope to start Skyping with many of you soon. Sometimes those are the only things that get me back into my warrior spirit. On the days when I can do the whole FB thing….I love your posts. I want you to know how many talented, funny, brilliant, beautiful and generous people I know and call friend, family/zebra.

Blessings to everyone,

Bridget Robertson

Revealing Myself Through Diseasing. Losing My Healthy Status Is A Very Big Thing.

To everyone who loves someone who is sick and those who are sick.

Don’t look away. Not now.

“It’s a big thing when we lose our healthy status.”

Those words, rang through me. I am grateful to my beloved niece, Tara Rachyl, for giving me such a profound statement.

I have multiple chronic conditions and a cancer ( NET Carcinoid/Carcinoid Syndrome) that is both chronic and acute to boot. I lost my healthy status nineteen years ago. We are hard wired to expect sick people to get better or worse. When they remain sick for extended periods or years, people don’t always understand. The sick person, may remain alive, but in a perpetual state of sick or diseasing. Please read that last sentence again.

Sometimes friends and loved ones end relationships. They wanted equity. I can’t guarantee equity. I am taking one day at a time, sometimes one hour at a time.

Everything just keeps getting scarier when your physical body changes irrevocably. In the process of diseasing, my body started to lose many things I had taken for granted. When it outright failed and faltered in ways that are also embarrassing, it felt like cosmic cruelty. How much about these losses do I want to let anyone know? Will they care or be offended if I do? Why not stay silent? Why write about it all? Because, I live in a visual world, that hates anything that does not fit within strict unrealistic standards. Because, we expect people to get better or worse, and we need to stop that.

If you still have healthy status, know that being ill puts us on the outside of normal society. Disease, life threatening or chronic, has ways to make us feel like inferior beings. Healthy society contributes to those feelings. We are exposed and vulnerable. In my bareness I am walking a razor’s edge that begs me to be fearless. In doing so, I am opening up a possible floodgate of ridicule and abandonment from some. I am lucky. I have a fiercely loving and loyal husband and circle of chosen family and friends. Even knowing that, herein lies the honesty….illness has taken much more than I ever expected and will likely continue to do so. To not share my story would lure me into hiding again. It would keep lies of omission between us. We need to stop distorting our real physical shape and physical experiences from each other. I despise the typical media show of beauty and health “standards”. Many diseases, not just cancer, alters our physical bodies and lives in irreversible ways. Let me speak of mine.

I had one third of my left cheek surgically cut out when I was forty three, twelve years ago. It was a large raised bumpy area that developed at my earliest stage of puberty. It was in part, a dermoid tumor. Turns out, after reviewing the testing many years later, there was a section that is part of my cancer. The surgeon admitted there were hundreds more tiny “spots” that he could see. It would require surgery that pulled back all of the skin from my face ( just like a facelift) and scrape them away. This is not something I ever want or wanted to do! Once the cancer was diagnosed, he didn’t want to be the one to do it either. He withdrew, suggesting I talk to surgical oncologists or other plastic surgeons. I ultimately put this off because I could have tumors anywhere under my skin. There is no plastic surgery for the entire organ of skin covering my body. Nor a reliable test to see them if they are not raised or large enough. Even if they could surgically remove every single one, that does not cure or arrest my cancer.

The most embarrassing effect is also the one that has held me back at every turn. Almost all of my teeth broke and cracked. This does happen with some carcinoid patients. Then, they began to disintegrate. Pain medications that I have refused for many years were initially part of the problem. My speech has become difficult to understand. Teeth help us pronounce words. I was an excellent speaker in both large groups and one on one. No longer. I am having trouble finding an oral or maxillofacial surgeon who will remove my few remaining teeth and get me dentures. The doctors in this specialty, are very nervous about the need for an octreotide IV and push along with an experienced anesthesiologist with what is normally routine surgery. (This is the ONE surgery I want done!) In fact, this unexpected loss of teeth is THE determining factor in who I spend time with or where I go. Nothing affects our appearance and others perception of us more than teeth. Who hasn’t laughed, heard or made jokes about people with no teeth?

Eating has become a perverse necessity. Food must be very soft or liquified. There are almost no places to eat out. Thank goodness for high speed blenders and juicers. I “graze” on their results for much of my day.  I can’t eat a full meal at one time without risking my tumors producing high amounts of peptides, hormones, and histamines. That could cause a (another) carcinoid crisis which can lead to a coma or death.  I have a reduced list of foods I can eat. Tyramines are a real problem. I make milk from rice. Our home is a production line of scheduled soaking and cooking of seeds, rice and legumes needed for each day. If this sounds complicated and time consuming, that’s because it is. Animal products are out of the question. It’s the only thing my cardiologist and gastroenterologist can agree upon. If eating becomes impossible, enteral feedings will be in my future.

In the first three years of the cancer I was bed ridden. Outside of those three years, I was wheelchair bound. A car accident from 1995 left me with two burst discs and a lot of nerve damage. Spinal surgeons refused to do surgery because I also have  fibromyalgia. Immobility brought a weight gain of two hundred and forty pounds. The medical world calls it morbid obesity. It comes along with open disgust from many people who assume you can’t control your eating or a number of other inaccurate judgements. The first oncologist dismissed the weight gain. Why? He thought I was dying. Every doctor around or after him made it THE issue of every single appointment. I was well aware of my size 38 body. I asked for their wisdom. Their greatest plan…..eat smaller portions. What a useless and ineffective idea. I lost over one hundred and thirty pounds by eating a soft whole plant diet with an enormous amount of filtered water. The surprise…. the weight loss was ugly. It left me oddly shaped. Cancer weight loss is uneven and lumpy at best, even with exercise. My spine, shins and hip bones show. I have to bring and sit most times with extra cushions, including when I am in the bathtub. My thighs, stomach and upper arms are disproportionately overweight.

The second unwelcome surprise, I lost an additional seventy pounds in six weeks. Malabsorption is common in Carcinoids. It scared me beyond words. I researched and tried something that slowed the weight loss down. I still have weight I can lose. Just  not through malabsorption. Thanks to my now, third, physical therapist, I can stand up straight and do limited walking. I have begun intense stretching like a dancer. She is trying to save and increase muscle tissue in my body. I finally made peace with this lumpy, misshapen, mostly, size 12 body when I decided to stop avoiding taking pictures. The world gets to see what I look like. That look is of a scarred woman.

I have developed ninja warrioress skills because of doctors. The surgery doctors would love to do……..is aggressive and preemptive. I’m not letting them cut away major parts of my digestive tract on a maybe. That, would definitely put a clock on my life. I am a very reluctant and difficult patient. If I let them, they would just keep finding more and more pathology to report and suggest either an obscene amount of questionable medication (which always comes with side effects and/or allergy problems) or continuos dissection of my body. Whether they personally will do it or not seems to be up for grabs. Most of my energy is used for the resistance battle against all of their “modern skills”.

My natural skin tone is very fair. Pale would be accurate. So, flushing, the hallmark of carcinoid syndrome, that can turn my face purple is both painful and humiliating. People will both stare at you and ignore you at the same time. It’s a confirmation of many quantum mechanic theories, this being invisible and visible all at once. People will also comment in derogatory terms about you, in front of you, but not to you. I won’t lie. It does hurt. Strangers let it be known that your physical presence is undesirable. All of this while the searing heat and intense itching are driving me to ice buckets to dunk my face and/or back into, whether in private or public, to simply keep me from ripping off my skin with my bare hands.

I throw up and/or have diarrhea almost daily. I need to know where a bathroom is every time I leave my front door. Whether I can travel, or how often, is determined by an app that helps me find restrooms, even within blocks of my home.

Pain is always present. My normal everyday pain begins at a seven on the 1-10 scale. I can’t spend my life waiting for a day that I will feel good. Those haven’t come in years. So when I leave my home, it isn’t because I am feeling well. It’s because I was a recluse for about eighteen years. Being home bound was a tiny life. I may not  have a choice about being at home 24/7 at some future date. I can’t seem to accurately judge how much activity I can do without overdoing. This week I exacerbated pain throughout my body even in places I didn’t think could have pain. My recovery, can  then take more than a week. Pain medication did not help me. I was given many at first. The glue from the patches still causes severe itching on every site where they were placed. People don’t always have the option to refuse pain medication. It may not be an option for me at some point. I am certified in many alternative methods, my experience thus far, is relief from any one source or mixture is spotty.

This past weekend, I started wheezing and being out of breath. This is just the latest symptom in my carcinoid syndrome. Frightened, I only told my husband. He had noticed. I don’t know which of us was more concerned by this newest development. It happened again, yesterday. This could stop my physical therapist’s progress. Being unable to breathe is not only terrifying, it makes movement impossible.

There are other times I look just fine. There’s a real absurdity. These diseases are called “invisible”. My appearance cannot tell you how I am really feeling or the status of my illness, unless I am flushing. The  “Oh, but you look so good”, has nothing to do with what I am experiencing. Here is a small list of things you will never see even in person, or on my face, or in a picture.

My chatting away with a friend won’t register the excruciating pain in my back, arms and legs screaming through my nervous system.

My writing can’t let you feel the ice cold in the bones of my hands that I will wrap in a heating pad for the following twenty four hours with limited relief.

My words cannot help you understand that I spent hours looking up most of these words over and over to write this blog, because I can’t remember the spelling for two seconds.

I don’t speak of the many times I am unable to understand a single page of a book that I reread five times, because comprehension has deserted me.

There is no way to capture my need to shut off every light, have nothing touching my body with only quiet music playing, because any other sense stimulation feels like a total body assault.

When my iPad becomes too much stimulation and my inability to engage on social media disappears because my brain will not make sense of what is in front of my eyes, I don’t understand either.

I can’t shift the feelings of missing out, after I have forty eight hours of insomnia followed by twenty hours of sleep that prevented me from, fill in the _____________ (friends birthday, husband’s office function, lunch dates, web meeting, circles, etc.).

I imagine some are expecting this to wrap up with many hidden gifts from these deficits. Not today. That’s for a different post. I am sitting with my discomforts as discomforts. I won’t deny and run away from them. Yes, there is always an ongoing dance of laughter and joy somewhere while these are occurring. I observe people rushing to those dances as if we can inoculate ourselves from any further deficits. We can’t. I am not unique or special. We all have great difficulties. Mine are through disease. I decided to give them voice, because we all need to be understood and be gentler with each other. Too many of us have invisible struggles. My hope is that we all develop our abilities to become more compassionate, empathetic, loving, kinder and humorous. Somedays humor is all I have left inside of me.

My niece, Tara Rachyl, gave me a great ending to this blog as well:

” It is a stark reality, YOUR everyday. And there are just so many who don’t understand how your life gets flipped, turned upside down when you lose “healthy”. Nor do they understand that their well intentioned platitudes are hard to receive with grace when you are 12 months, 2/5/19 years down the track from the acute onset of the disease that took away your health.”

Thank you Tara. You are articulate, brilliant, beautiful and I love you.

We both have lost our healthy status. It was and is a very big thing.

Blessings to all,
Bridget Robertson.

The Music Of My Life Carrying Me Through The Great Dark.

By Bridget Robertson

I’ve learned to ride the wave of the currents. There is nothing like music to put you on those waves and finally set a course.

Trust either Mary Chapin Carpenter or Stevie Nicks to stop me cold. Just long enough to get out my emotional surfboard and stay on it, until I find new shore, one I have never explored.

“Can I sail through the changing ocean tides?
Can I handle the seasons of my life?”

“Landslide”
Writer(s): Stevie Nicks
Copyright: Welsh Witch Music

On any day, one piece of music, some or many of lyrics can begin the journey.

The lyrics ask great questions. I have officially celebrated the turning of the wheel for the last thirty-five years, since I was twenty. I have watched and participated in the ever changing, many faces of the Goddess. This Samhain is different. The veil opened immediately after the Autumnal Equinox. Maybe it’s my life threatening cancer, maybe it’s getting older. Either way there are a lot of  waves and landslides coming, more and more frequently.

Conventional wisdom would say turn to, or on a light. My wisdom says that light can be blinding. We seem to rush through the dark time of the year, holding our breath until the first signs of spring. Not now. Not this time. Not ever again. In a world that entreats us to squelch the dark as quickly as possible, I say it’s time to seek it, hold on to it and find the real beauty within it. It doesn’t need to be expelled. It beckons and needs to be explored. Today I found a brand new shore within it.

I found my tears, in “Landslide”, a song that I will just keep on repeat, until all the tears are finished wringing from my body. These are not just eye tears, no, my whole body is releasing floodgates of sorrows, losses and pain. In this dark there is a tenderness that is excruciatingly fragile and necessary. Embrace it and it will break. Touch it ever so gently it will send a comfort unlike any other. It will move through every nerve within you. Stay with it and it will offer a delicate, nuanced—–repose. I love that word. It’s archaic meaning is “give rest to”. Samhain and it’s Goddeses have found me a place of rest until the body tears and pains have finished this round.

I will spend the next seasons in the dark, exploring the deep end of the water, violent waves and caves. It is only frightening if I stop trusting myself to feel my way through. This is no place for eyes or the sight of light. It is both tactile and emotional. There are many sounds concealed here as well. All of them are music. Not all are harmony. Still, an invaluable orchestra that pleads to be heard. There are voices that want expression and words seeking writing. Some of them are internal. Most have external companions in this chamber. Once heard and felt they are my responsibility. Their expression is as vital to life as any we find in the newness of spring. Maybe more so. The land needs for things to decay, decompose and restore it’s fertility. It is the way of life. Without it, we become dust bowls swept away with every breeze and thought. Depth is my home. It is where I learn how to navigate the landslides. This is my unfoldment. This year I am one of the record keepers.

My portal is in music.

Blessings to all.