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.