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,