Buddy and I just got back from a walk. On both the way down and the way up the hill, I had to shoo a snake from his basking spot in the middle of the road. I understood perfectly well his desire to soak in the sunshine, as the air possesses the crispness of fall today. However, it wasn’t a safe place for a sleepy snake to lie, so I herded him back to the tall grass. Buddy desperately wanted to help, but I kept him on a short leash, as it would not have ended well for either dog or snake.
I’m nursing a bit of a stomachache today. Over the past few months, it would seem that I experience what I assume to be side effects from the crizotinib with greater frequency. Beginning in the early spring, I would have perhaps one day a month where I’d have a headache accompanied by nausea for an hour or two. Gradually the duration and intensity of these spells grew longer. Now it can happen two or three times a month; last for twenty four hours or more, and might be accompanied by spasmodic cramping in my calves.
I have to wonder if there is a correlation between the side effects and the fact that the I am becoming resistant to the crizotinib. This is merely speculation on my part (conjecture for which I am woefully under-qualified), but if the drug is either being blocked or somehow no longer completely engaged; perhaps there is potential for more noticeable effects on surrounding cells. If you fire a bullet and it enters the target, you can assume that most of the damage is to the target itself. However, if the target repels the bullet, it still has to go somewhere.
I had my monthly appointment at the hospital last Tuesday. Another potential side effect of crizotinb is a slower heart rate. When I began the trial I was taking 60 mg of propanolol (a beta blocker) daily to control a benign essential tremor. Within the first few weeks my heart rate had slowed significantly and I had to go down to 40 mg. On Tuesday my pulse was hovering around 50; which was somewhat slower than usual, so I earned myself an EKG. That meant a longer day, but I also scored a bed, lunch (oh hospital food!) and a short acupuncture session from Irene. I also had more time to chat and catch up with my favorite nurses; all in all, not a bad way to spend a Tuesday. The EKG was normal, but we lowered my dose of propanolol to 20 mg as a precaution.
I had my annual appointment with the dermatologist scheduled on Thursday, so rather than drive back to New Hampshire, I headed to Sadie’s home in Newburyport. We had a delightful 36 hour spree of talking, trivia games at the local pub (our team came in second), and lots of walking on the beach. Sadie and I also saw a movie, the absolutely amazing I am Love. I cannot recommend it enough; it moved me as perhaps no movie ever has. Make certain to stay through the credits.
The following morning, Sadie awakened me just before dawn and we hurried to the beach to watch the sunrise. There were already several people gathered; mostly solitary women sitting on individual blankets, and I realized this must be a ritual of sorts. Off to our right a larger group was assembled in a circle for what we assumed to be a memorial. As the sun came over the horizon, they each tossed an object into the sea and then they broke into song. Between that and the movie the night before, I felt absolutely raw (but in a good way) with emotion. It was a truly spectacular experience.
And then we capped it all by driving to an isolated section of the beach where Sadie took some photos of me in the early morning light. I am (yes) dressed only in my skivvies, and in my favorites I am crouching down, the rising sun to my back, drawing in the sand. My stance resembles a shore bird, my face is alive with joy and wonder. I am in my element; another day just born.
I wonder if you have to much crizotinib in your body that can hurt like too much propanolol.
Excessive chemos damaged my nerves and immune system. I also started propanolol 10 years ago for arrhythmias, from the start
did not like the 50 mg doses and I cut the pills in half to 25 mg, is OK now.
Something happened to my heart in San Francisco, I remember my jealous latino girlfriend hearing and tossing my french long play like a flying soccer out of the window because my french nudist close friend introduce me to nudist camps and showed me a lot. May be was the Edith Piaf song “Non Je ne me regrette rien”.
With slower pulse our heaths last more, we live longer! Hard with your “stomachache”, my cure i s toma (take, drink) cachaca and dance cha cha con un Che, nickname for argentineans in latin-america.
My hospital is only 30 minutes from home, you have the best treatments, real treats, acupuncture, restaurants, movies and beaches.
Now that you also recommend movies I have to see I am Love.
In my teens I had an snake skin in my bedroom hanging from ceiling to floor, 1 foot wide, boa or anaconda or a relative of the talking one from the Garden of Eden. You are a saint, legend has it that St. Patrick drove all the snakes from Ireland. … and used a staff to herd the slithering creatures into the sea, …
you and Sadie are beautiful in the beach picture, goddesses of the sea like Lemanja that I came across in my visits to Rio in Brazil finding candles and flower offerings on the beach. I think that Yemanjá made her way to Newburyport, with portuguese fisherman or brazilian immigrants. Probably I’m not going to cruise Portugal-Spain this fall but just got cruise pictures from friends on 10 day Schooner trip on New England, I like to do that in Spring or Summer.
For your next beach visit take your offer for Yemanjá, flowers, perfume, lipstick, ask for something and leave them on the beach at low tide or toss them into the sea. If the sea does not return them, your offer is accepted and your request may be granted.
We do not believe in witches but they do exist. Remember Salem.
“The goddess is known as Yemanjá, Iemanjá or Janaína in Brazilian Candomblé and Umbanda religions. The Umbanda religion worships Iemanjá as one of the seven orixás of the African Pantheon. She is the Queen of the Ocean, the patron deity of the fishermen and the survivors of shipwrecks, the feminine principle of creation and the spirit of moonlight. A syncretism happens between the catholic Nossa Senhora dos Navegantes (Our Lady of the Seafaring) and the orixá Iemanjá of the African Mithology. Sometimes, a feast can honor both.”
“Our lives are not measured by the number of breaths we take, but the times that take our breath away.”
Your post makes me happy, your happy moments, my happy memories interlaced
( ) ( ) Guillermo resuscitated
Guillermo, you are a seer. I did use a staff (stick) to herd the snake. I shall definitely toss something into the sea and make a wish…and I certainly hope my slower heartbeat can be put to good use as well. BTW, I am writing this from Sweden. I’ve never seen so many people who look like me. Your swedish amiga, Linnea
Dear Linnea, I have been reading your beautiful, touching, profound blog. I was diagnosed with stage IV BAC last year, so I can identify with your situation. It has been consoling to read how you have coped with the emotional and physical aspects of this illness. I read about your plans to travel to Sweden. As an artist and art lover you would enjoy visiting the National Museum of Stockholm
Another favorite of mine is Millesgarden http://www.millesgarden.se/sculptures.aspx
I’d like to write a million comments on your blog, but I sum them up in “Thank you, Linnea”.
Paulina from Finland
Paulina, thank you for your sweet words and feel free to write as many comments as you like; it’s one of my favorite parts of the blog. And thank you for the two suggestions. It is our second full day in Sweden and we’re having a great time…Linnea