Life in the North is so much about a sedentary life in an interior world. I wanted this winter to be different. I longed for the color, vibrancy and warmth of a more tropical location.
We made plans, of course. Steve and I sometimes learn slowly. Big Appetites create big plans. Last year was so hard… and we often only knew the confines of a little house in Seattle and the SCCA or the Hospital. So we planned a big trip—just like the one we planned when I originally got sick with leukemia. We would go to Mexico for Christmas. The girls would join us. We would rent a house and spend the holidays in a small village with a magnificent beach and stay all through January. We would visit relatives in Guadalajara, old times in Puerto Vallarta and see the changes in Sayulita. These plans had us leaving 4 days ago.
Trip planning took place in October. Health was stable, I was working with a personal trainer, working out, doing push-ups, taking long walks and feeling fine. Then came November. About 5 days in, colitis hit, on the heels of a weekend in Portland. Who knows exactly what the trigger was!
Here I will interrupt myself for a little rant. If ever you are in a situation to get weekly blood draws to check something where you need a number, like my CMV counts, and they are sending them to a lab where you get back a note that says “CMV detected, below the level of quantization.” And that level isn’t measured until it gets to be over 2000. And you are waiting for a number that requires action if it rises above 150 so this doesn’t make sense but NO ONE seems to notice until finally, you, the patient, challenge this and at long last they send it to the right lab where they measure much more specifically. And you wonder why you are the one to notice and correct this… remember this story and remember that ultimately you are the one who really cares enough to check and challenge and fix such things. The health system is full of such missteps. The patient is often the only one to notice it. If I’ve learned one thing thing it is this: Stay alert to what is happening. Ask questions. Challenge. Explore alternatives. I apologize for the conundrum. I am asking you to do this and to surrender to what is happening at the same time. It’s just the way it is.
Back to “then came November”. After our fun weekend excursion, colitis hit with the power and suddenness of a derailing freight rain. That pain was like… well, childbirth is the closest example I have. On a scale of 1 to 10, they ask me… 9, I answer. Pain is all I knew when that cramping began. I folded in over myself, tucked a hot water bottle close to my belly and the days passed with a mixture of hurting, little intermissions, medical tests, doctor visits, and fatigue from the above. The throbbing wandered all over my GI tract, stomach, colon—spread to kidneys, took up the center of my existence. Once again, diarrhea, vomiting and anorexia (aversion to food and liquid) accompanied everyday. The weight and muscle I had carefully gathered over the summer wasted away. The verdict? After so many tests, I lost count, it was the old adversary: CMV Colitis. My numbers were low, compared to the counts numbering the thousands that I experienced other times. But for some reason, the CMV devil was playing havoc with my system.
The doctor sent me to Anacortes to get a peripherally inserted central catheter (PICC or PIC line). I wear it still, from my upper arm into the vena cava just above my heart. Twice a day, I attach a “grenade” of the powerful antiviral known as Gancyclovir. In an hour, it releases the medication into my bloodstream. The side effects of this medication are the same as the symptoms of the CMV Colitis. Yes, you read that right—all the GI effects you just read about are the same as the side effects of the drug. I didn’t know if I was coming or going. All I did know was the couch or the bed, the hot water bottle, an occasional reprieve, and counting the hours in the days.
Slowly, so slowly, things improved. By the end of November, I was upright but weak. Mariya arrived, much to everyone’s delight as I began the process of healing once again. The ground I’d gained was lost so quickly. Now, inch by inch, I fight to bring it back. The CMV counts have stubbornly come down. The GI symptoms have obstinately abated. Through the misery of the worst of it, I recognized a stark fact: This was an antiviral that tore down the very immune system that was struggling to survive. So, I added a few of my own medications.
I started taking Rick Simpson oil, or Phoenix tears—a high quality hemp or cannabis oil at night for sleep and healing. Further, I used medical marijuana to help with nausea and the all important healer: appetite. I began a regime of medicinal mushroom extracts, from the company that mushroom expert Paul Staments founded, to give me energy and build my immune system. Once I could move again, I also partook of every “Complementary” treatment available to me—from foot reflexology to reiki to massage and acupuncture. And I kept walking, everyday I could. I am more convinced than ever that the tools of the medical establishment are often the wrong tool, not supportive of the whole system.
Ultimately, from all of these things… my tough body pulled itself together. I have a painting from my Aunt Elena that represents this journey I have traveled. I am the donkey, unsure, reluctant, too unsteady to carry my own burden. My spirit helpers carry the load for me, push me across the river to the shore where healing can begin. I love this painting and look at it everyday for what it tells me: there are helpers all around me.
I wake up every morning in the dark longing for warm bright beaches and pelicans flying. As the day comes into light, I write until this angst is gone and focus on the many things of the world that are possible. Today, I read the profiles of orphan elephants so I can support the critical work of the David Sheldrick Trust http://www.sheldrickwildlifetrust.org/index.asp. My small donation will represent a consciousness on this side of the world, supporting and cheering on their care.
I have so much in me that wants to go forth and do this kind of work. It may never come to pass. Only time will tell. But I can celebrate this December. This Sacred Pause of time on the cycle around the sun. I remind myself that I am a Winter Solstice baby, after all. This is a vibrant and a holy time with the girls here. Our little home is a hubbub of projects, cooking and ideas. Steve and I are deeply blessed and full of gratitude.
We are cautious now and taking it one day at a time. The planned for trip is on hold until further notice. We still have hopes for January. But we are not yet planning. If the coast looks clear, we will go like bandits in the night.
Please know you are in our thoughts as we travel to far away Brazil. No beaches, but family and relaxation. Love to each of you, Lenore and John
Oh, Shann. There really are no words… love to your whole family and healing every day Sue and Ken
I love that you are willing to take us with you through your writing on this crazy journey you are on. Through your writing we find our empathy and compassion and send those good vibes out into your world. Something we might not think to do so completely if the story were not right in front of our eyes from time to time. You are brave to be going through what you are going through. And you are doubly brave by putting the experienc out there in writing, Thank you. And bless you. I think of you in Aunt Elena’s photo as the one pushing the donkey across the river. You are a very strong woman.
So pleased you have recovered. Enjoy this holiday season with the girls and get to Mexico in January. The elephants will wait for you! Glad we didnt plan a SA trip this year! Lots of love from us all in Fairbanks. Joy
Only scanned your note, as we always read your welcome posts at breakfast together.
The title indicated “something” had happened, so I searched for “my tough body pulled itself together.” Y-A-Y for your tough body (and your always present “can do” spirit)!
More when we’ve read the details! Alice ========== Alice B. Acheson, Book Marketing/Publicity Specialist P. O. Box 735 Friday Harbor, WA 98250 360/378-2815 http://sites.google.com/site/alicebacheson Do It Yourself Life wrote on 12/14/2014 8:23 AM: > WordPress.com > Shann Weston posted: “Life in the North is so much about a sedentary > life in an interior world. I wanted this winter to be different. I > longed for the color, vibrancy and warmth of a more tropical location. > We made plans, of course. Steve and I sometimes learn slowly. Big A” >
Dearest Shann & Steve – may you fly like bandits in the night!!!! PRAYERS & BLESSINGS amid the JOY of the Holidays ooxxoo Susan
Shann – Thanks so much for sharing your journey. I can’t imagine the challenges you’ve been given and how well you have met each one. But most of all I appreciate your ability to tell your story so well. I hope you get to one of those perfect beaches sometime soon. You deserve it.
As always, Shann, thank you for so openly sharing your experiences. This journey has impacted so many of us as we share it with you vicariously. I hope you will be feeling the warm sand between your toes very soon.
love you all. Glad you’re together. Look forward to being with you next time, anywhere! xxoo
I’m so glad to hear you are exploring some natural remedies. Some Native Americans believe that every plant has a healing property and is the remedy for something. In fact, western medicines are often based on compounds found in plants.
I’ve heard great things about both cannabis oil and mushroom extracts, especially with regards to cancer cure and prevention. Just after reading your blog, I read about the benefits of cannabis oil for colitis, and also read that a Tablespoon of coconut oil can be immediately soothing in a flare-up.
Coconut oil turns out to be one of those miracle substances that has amazing benefits for all sorts of disease, including Alzheimer’s and Parkinson’s. It is anti-bacterial, anti-fungal, a healthy fat for the brain, a great moisturizer, the only fat that doesn’t degrade when heated so is a perfect cooking oil, etc. etc.
It seems only right for you to be looking to the natural world you have always loved to find the cures to your ills.
Loved the photo of the girls at Elena’s birthday and the one above. They are indeed beautiful! I thought your connection to your Aunt’s painting to be very poignant.
I got soooooooooooooooooooooo mad at the lab’s non-reporting of your low CMV numbers. It’s not as if you are a new patient! I know complaining takes energy, and you have more important uses for your energy, but some heads should roll there. I’d give them a piece of my mind but, sadly, it would just roll off their backs.
On to pleasant thoughts. Ed and I have been to the David Sheldrick place and seen their work in person! Excellent! We sponsored an elephant for our oldest grandson until the elephant was released. Not sure how that is possible, as the tenders are so constantly with them. Yes, our donations do indeed represent a consciousness of this side of the world and more is needed — especially in Asia where the value of the tusks outweighs everything.
I’ve never thought of you as a bandit, but come January, Ms. Bandit, I’m betting that off you will go!
Fondly, Alice ========== Alice B. Acheson, Book Marketing/Publicity Specialist P. O. Box 735 Friday Harbor, WA 98250 360/378-2815 http://sites.google.com/site/alicebacheson Do It Yourself Life wrote on 12/14/2014 8:23 AM: > WordPress.com > Shann Weston posted: “Life in the North is so much about a sedentary > life in an interior world. I wanted this winter to be different. I > longed for the color, vibrancy and warmth of a more tropical location. > We made plans, of course. Steve and I sometimes learn slowly. Big A” >