On Monday, after my last radiation treatment, the tech asked if I wanted to take the mask home. I wasn't sure at first, but I did take it home. I'm not really clear yet how I feel about the thing, but I don't feel like destroying it. I feel like decorating it....and then maybe destroying it. Years ago, we had a Wig Roast party after my very first chemo treatment in 1997. Everyone had to come with some sort of head adornment-hat, wig, whatever. I still think it was the best party we've ever had. Perhaps we need a Mask Roast......could be a great theme. Everyone would have to wear a mask of some sort....I like it. Anyway, I think I'll keep track of how the mask gets adorned. Here it is now, unadorned. Look who is coming to dinner:
I am a bit miserable today. After my third radiation treatment, I noticed that my throat was a little sore. This hadn't come up in any of the discussions about side effects, but I assumed it was due to the radiation. Guess what? I was right. And of course it worsened after the 4th radiation treatment Monday. Six days later, I am worse again requiring narcotics and holding off the occasional panic attack about not being able to swallow. Funny thing is, it is hard to take the pills to relieve the pain, so I asked for some liquid narcotics. The drug store couldn't fill the prescription as the insurance company said I was too old to get the drug. To old? ok, that's a new one. I cried at the pharmacist, and she made me a small amount that I had to pay for. Would have kissed her feet if I could have stopped myself from crying. She sent me home. I went, and took some of that glorious liquid and got a little relief!
The next day, you know how this goes, I called the insurance company, they said this never should have happened and gave me a number for the pharmacy to call. They actually did call and then they filled the script and refunded my money.....but why, I ask you , does this need to happen with a drug that I really, really needed that minute? Oh well, I did get it, and I knew who to call and what to say. What about the little guy who doesn't?? I wonder about him/her all the time. What must it be like to be strapped into a mask for a long time and not really understand why. I had to still my mind and keep telling myself that everyone there was trying so hard to help me, and I understood exactly what was going on. Oh well, the doc said the throat will improve in 7-10 days. WHAT? Ok, ok, ok, I can do this; I'm on day 6, and maybe today I didn't wake up feeling worse.....maybe.
Yesterday, I made a significant mistake, though, and I need to come clean. I realized that I had used a significant amount of the first bottle of liquid narcotic, and the syringe was too short to reach the liquid. I looked around and found one of those little cups that has amounts labeled on it. I poured in what I thought was 5cc or a teaspoon. What I had actually done is pour in 5 teaspoons, and I took it, overdosing myself 5 times what my correct dose is. I clearly need supervision. NO wonder I felt absolutely awful, sleepy, and threw up a few times......what an idiot. Took me awhile to figure out what I had done, too. I could have really hurt myself; instead, I just worried my mother unnecessarily as I couldn't get off the couch! oops. Won't do that again, believe me.
I have to report a birthday present I was given last week. This present took my mind off my sore throat, made me giggle, amazed me, assaulted my senses, and made me tipsy, AND I learned a very useful skill....I think. My present was a breadstick-making lesson. When my friend said this, I thought we would be going to the Sur Le Table store, or somewhere, to have a lesson. I didn't know diddly about breadsticks, but they sounded good to me. So here's what really happened. We walked down the street to a gorgeous house in my friend's neighborhood, rang the bell, and Bill appeared, the homeowner. Bill was going to show us how to make breadsticks. Now Bill is retired, and he has focused some of his retirement energy on baking bread. He has his own baking room with all sorts of wonderfully cool tools, like a dough cutter and a tray grabber thingy. So we made dough, using the cool dough hook on the Kitchenaid. We kneaded the dough and left it to rise as he showed us around his magnificent house. That's when we came across the 1916 Skinner organ built into the house. Bill and his wife had the organ completely repaired and retrofitted, just like the Skinner organ at Severance Hall (OMG!), and there is a pipe room in the basement the size of our kitchen that we walked through as the organ was playing. Next to the pipe room, of course, is the enormous wine cellar/tasting room. Clearly, we needed a fine red to accompany the hard work we were doing with the breadsticks. We drank the whole bottle over the 3 hours we needed for the b-sticks. And I haven't even touched on the gardens. Suffice it to say that the grounds, the arbor, and the vegetable garden were magnificent.
After the dough had risen enough, we punched it down, cut it into 4 pieces and rolled each piece out. Using a cool Bill tool that cut four 1cm strips at one time, we proceeded to make 9 trays of breadsticks. We cut them, twisted them a bit, and laid them in the trays. Then, we chose toppings to sprinkle--like wasabi-covered sesame seeds, chia seeds, salt, and cheese. Then we baked them. The breadsticks melted in our mouths, as did the wine. I was ready to move in. Bill's story came out over the three hours, and we were intermittently laughing, crying, and drinking, and all the while organ music was booming out of the vents in the floor, as Bill is slightly hard of hearing. Just picture that: Here we are with floured hands twisting breadsticks, one hand holding a fine cabernet, as we listen to this physician/entrepreneur/gardner/renaissance man/arborist/baker tell stories while an organ plays a recording of our own Cleveland Orchestra's organist at a volume loud enough to blow our heads off. And the breadsticks were amazing too! What an afternoon. I'm still recovering, but the breadsticks are almost gone. Aren't they beautiful?
We also had KT home for the weekend, and that was mostly lovely. She still cannot drive (we won't go into that), so I had to do some carting around, but she managed this pretty well on her own. She was clearly sleep deprived and she slept for more hours than she was awake, I think! We also had a wonderful dinner with her where she sounded so good--mature, prepared for college, balancing competing demands well, and enjoying her classes. Wow, who were we talking to?? She also said that she was working hard to keep her room clean as her room-mate is a complete slob. Ok, clearly this is an imposter.....
Finally, i have been attending the Carmelite Monastery's 7:30am daily service. Ok, they are Catholic and I'm not, but the monastery is at the top of our street, the sisters are cloistered and devoted to prayer, and they hug you and pray for you and the service is mostly sung. What is not fabulous about that? I get to sing, I get hugged, I get prayed for, and I take communion. Here's the thing--they believe that this bread and wine REALLY IS Jesus's body and blood. So if I get a little of Jesus's blood running around in my blood, maybe it can do some damage to that tumor. I mean, why isn't that a good thing no matter what? HOpe that isn't sacrilegious to my readers. I mean it only positively, and I love this service, as it is short, lovely, contemplative, and they sing in harmony. it feeds my soul and makes me happy. that seems all good.
so dear readers, I am slightly miserable, but I am so grateful for this time I have been given to recover. THank you Chip for having a good job and giving me the ability to have some time off, as I am a bit of a loopy basket-case even when not overdosing myself, but my symptoms other than the throat are maybe slightly better, and that is wonderful. I have been walking, walking, walking and that is wonderful too. I feel very loved, and truly blessed by these Carmelite sisters and so many others. I'm hoping that tomorrow is the first day I can say that I feel better. That would be magnificent! And a big shout out to all who have been walking the beastie and bringing food. I love you people; you make my life better every day.
How about a few poems. Love both of these. Read them slowly, with quiet attention, and see if you like them too:
Last Night as I was Sleeping (Antonio Machado, translated by Robert Bly)
Last night as I was sleeping,
I dreamt---marvelous error!---
that a spring was breaking
out in my heart.
I said: Along which secret aqueduct,
Oh water, are you coming to me,
water of a new life
that I have never drunk?
Last night as I was sleeping,
I dreamt---marvelous error!---
that I had a beehive
here inside my heart.
And the golden bees
were making white combs
and sweet honey
fro my old failures.
Last night as I was sleeping,
I dreamt---marvelous error!---
that a fiery sun was giving
light inside my heart.
It was fiery because I felt
warmth as from a hearth,
and sun because it gave light
and brought tears to my eyes.
Last night as I slept,
I dreamt---marvelous error!---
that it was God I had
here inside my heart.
One Heart (Le-Young Lee)
Look at the birds. Even flying
is born
out of nothing. the first sky
is inside you, friend, open
at either end of day.
The work of wings
was always freedom, fastening
one heart to every falling thing.
