Happy New Year!
My one year anniversary post neck dissection surgery was December 9. I forgot all about it. The one legacy of the surgery is a really tight neck muscle, the SCM, or sternocleidomastoid muscle. Mildly annoying but not a big deal.
The good news is that the thyroglobulin test post surgery is now close to zero. Where it should be. Meaning it looks like they removed the remaining cancerous lymph nodes and got it all. My doctor kept telling me, "This is good news!" And, he released me to see him in one year. That is progress.
What a weird year. In January all I did was sit in the recliner under two blankets while wearing layers of pjs. Fast forward to July and we had done a 1200 mile bike tour. I took my first art class, a drawing class. I learned to handle raptors. I put my embroidery work out into the world and it was well received. I went into business for myself. Thank you 2010. You have no idea what you can accomplish unless you try. You don't know your own true strengths until you test them.
2011, Let's go. I'm ready!
Marilyn by Jessica Harrison
I know what this feels like! While I like macabre stuff in general, I especially liked this one because of my own neck surgeries. And, this is an altered Royal Doulton. I know this because my grandparents collected these. A lot of them. Grandmom focused on exactly these "pretty ladies" which I found kind of twee and cloying. I was never much into anything lady-fied. Granddad collected the male "character figures" which I always thought were way cooler.
Hmm. Swords and book learning over poufy dresses.....characters versus "pretty ladies"....Yes, I really like where Jessica Harrison is going with these.
I am entering this in a free community exhibit, "petite 4 --miniatures" at the OFFCenter Community Arts Project. The show runs from October 1 through October 21 at 808 Park Street SW.
(there is an ad when this starts, sorry) Full transcript
I liked this clip because Clinton is pragmatic and genuine about the process. This was essentially the path I took as well. You want to get healthy and you quickly discover that there is a lot of evidence that the plant-based diet is the way to go. I try to not be a bore about all this and figure people find their own way to what works for them. If you are interested I would recommend the following books:
The China Study by Dr. T. Colin Campbell and Thomas M. Campbell, II
Compelling evidence from the most comprehensive large study ever undertaken of the relationship between diet and the risk of developing disease. Kind of blows your mind.
Anti-Cancer: A New Way of Life by David Servan-Schreiber, MD, PhD
That the book is part memoir makes it more powerful for me. That he had a cancer recurrence and it was not until then that he made major dietary changes and focused on improving his "terrain"--that resonated with me. That second go round really gets a person motivated! His 20 Anti-cancer rules
We are now 332 miles into our tour. I would like to go on and on about something: positive mental attitudes, mastering hill anxiety, how being on the road is liberating, etc. These are all things on my mind but I am tired. This is hard. You really have to keep your focus and keep your mind right. Worrying about hills in advance is counter-productive and really un-Zen. Being in the moment is the best thing to do and the best part of being on the road.
And, June 11th was the 6 month anniversary of my neck dissection and I spent it cycling through Washington catching glimpses of Mt. Rainier and watching a pair of eagles flying together over a meadow.
News from quarantine: Four days in one room of your house and you opted not to get the digital converter box for the tv.
After taking your tiny pill from its giant lead container, you rush home into quarantine with a stockpile of hard candy. You need the candy because you want to keep your saliva moving because the radiation can make your salivary glands burn and hurt. Mine feel fine. You can feel where the radioiodine is being absorbed as the area gets a bit swollen. It seems that mine is all concentrated around the scar tissue and where they took the lymph nodes and not at all around the empty thyroid bed. Good. Zap those cells!
You follow the protocol so as not to irradiate your spouse. You are never in the same room, eat off disposable plates, wash your towels daily and separately, etc. Dagwood is keeping the dog near him as well. I am not sure why but I have been having vertigo so I am really just resting in the bed. I could move around within my one room, but what would I do? Quarantine ends up being very quiet. It is hard to imagine how you could make it a high energy event. You have a lot of time to think, mull, ponder, reflect, and generally work out some mental knots.
I found this piece by Dana Jennings at The New York Times. He describes some of the things I have been thinking about taking things slow. We rush to return to normal and focus on the physical recuperation and seem determined to gloss over the real fundamental issues being raised. The big scary questions about life. The universe is tapping you on the shoulder trying to to get this dance and I would suggest going for it. And I know because I tried the rush right back to normal approach last go round. Anything life changing demands your full engagement. And, such things are not to be rushed. As he says,
After surgery and treatment, my 21st-century synapses and neurons wanted to believe that the cancer had been no more than a bump in the road toward a bright future — just a particularly nasty frost heave.
But the deepest analog part of me understood that having cancer was a life-changing event. As much as I thought I wanted to forge ahead, surge into the whirlwind of dailiness, I needed to slow way down.
My recuperation is going very well. My recovery is a work in progress.
I started telling you about my saga and figured a one-month update was in order.
Two weeks ago I was afraid things weren't ever going to improve. My neck was just so grossly swollen. I suspect most recovering patients experience this kind of doubt. At Day 31, it is as if the heavy lifting is done and now someone just has to tidy up the place. What a relief!
I can drive! I can swivel my head. Each day brings less stiffness and more ease of movement. My right shoulder is still a bit weird. There is still some odd nerve sensation, like a weakness, when I raise my arm straight out to my side but it is receding. I still have a little swelling on the right side under my jaw. The feeling there and at my ear lobe is beginning to return. There is some numbness as wearing a scarf still feels really odd. My scars are looking bumpy but less red.
Now the focus is shifting from surgery to treatment. Here is where personal stamina and grit come into play. Sure, you made it over the surgery hurdle but it is not yet time to party! Just when I thought I felt human, we get to embark on a stretch of of hypothyroidism and an odd restricted diet. We are going to schedule radioactive iodine therapy or ablation which uses radioactive iodine, Sodium Iodide (I131), to kill any remaining cancer cells. The clincher is that for this to be effective, high levels of TSH need to be produced in your body. So you stop taking your thyroid medicine and your pituitary goes into overdrive cranking out the TSH. This makes you feel like crap, but you are OK with that as you are anxious to kill any pesky, lurking cancer cells. And the thinking is that the low iodine diet may help get the radioactive iodine into the cancer cells.
I have reached textbook hypothyroidism. My face is puffy. Thinking feels like pulling taffy out of a freezer. Short term memory is ...what was I saying? All systems just kind of slow down or go a bit off-line. I am slow to wake up and never really get going, sort of like wading through molasses all day. My thermostat is broken. I am always freezing and can't get warm. That kind of thing. Of course, this is just until I take my radioactive pills and then I can start up the thyroid meds again. The diet is fine-- very healthy as it largely whole grains and fruits and vegetables. Having gone practically vegan, we really miss tofu and soy products. You can't have anything made with salt, like ketchup, or any processed foods, or eat out anywhere. So, you are cooking all the time, from scratch. Watching Dagwood baking bread and making almond milk is exhausting!
In the large scheme of things, this is a minor inconvenience on the road to remission. But, truth is, it is hard to be gracious when just as you start to feel better, you have to feel bad again. I don't want to complain because I am committed to killing any cancer cells. But the timing sucks, you know?
Next update-- How to kill time in radioactive quarantine.
Day 13 post-surgery: Do not disrespect the neck!
When I learned that my lymph node biopsy came back with malignant cells, I arranged for surgery at the Mayo Clinic. No dithering about. Let's go to the experts and handle this. Knowing I was in good hands, I didn't do a lot of pre-surgery research. I knew the surgery was to be therapeutic and diagnostic. That is to say, I knew they would remove the cancerous lymph node(s) and do some significant diagnostic poking around. After discussion with the surgeon, we decided the best thing would be to take all the lymph nodes from the right side. Sounded like a good pro-active plan. Sounded reasonable.
Now I am home with recuperation time on my hands and I started looking up neck surgery on the internet. Whoa. My suregery would most accurately be called a neck dissection. Neck dissections are commonly done for individuals with head and neck cancers when the cancer spreads to the lymphatic system. There are approximately 600 lymph nodes in the body, and 200 of this are located in the neck. Now, check out where the surgery is. Below is a diagram of the regions of the neck where the lymph nodes are located- (zones I through VI).
I was forunate to have had a right modified radical neck dissection. In other words, lymph nodes on the right side of my neck from my jaw bone to my collarbone (zones II - VI) were removed but they left in all my veins, nerves and muscles- hence the modified dissection. I was fortunate not to require both sides be dissected at once or a radical neck dissection which also removes the internal jugular vein, accessory nerve, and sternocleidomastoid muscle.
What is like to have a neck dissection? I am at Day 13 post surgery. My neck is stiff like a piece of hot wood. I can't really turn my neck side to side. I can't do a whole lot without getting getting weird neck muscle spasms. Good posture hurts. I can't drive yet because there is no way that I can back out of the driveway. There is less and less pain but there is muscle stiffness and discomfort all the time. My right ear is numb. The numb ear is from small nerves to the skin being cut in surgery and can take 6 months to a year to resolve. I am feeling pretty good energy wise. The mood is good unless it is not. I have been stretching and trying to get more range of motion in my neck and my right arm.
I still have a lot ahead of me: getting my neck back in shape, finding a new endocrinologist, another radioactive iodine ablation (treatment to kill any remaining thyroid cells) with its four days of radioactive isolation, etc.
Your neck is chock full of things you use and rely on-- breathing apparatus, major arteries, nerves from your brain to all your other parts, muscles to hold up your giant brain....etc. Important. Think about trying not to use your neck muscles.....you can't really not use your neck muscles! So, everyone silently appreciate their workhorse of a neck, right now!
Last week, Cristy and I had the pleasure of traveling to the Mayo Clinic in Phoenix, Arizona so that Cristy could have her neck opened up and poked around in.
Cristy is doing fine, thank you for asking. She's at a point in her recuperation where she sometimes laughs at my jokes. When she stops laughing at my jokes again, that's when I'll know that she's all better.
In any case, here are some pictures I took. Mayo Clinic is a place of fanatical orderliness, cleanliness and gleaming medical equipment.read more »