29 April 2014 @ 02:19 pm

Musings on what will be a long year  

I am looking at months ahead with many many doctor and medical visits. I hope to be celebrating Christmas 2014 free of them at last.
I have long silver hair. Later this week I will have it cut. I cannot imagine what that will feel like. I have worn my hair long for 55 years.
I have a space where I have put up some of my best writing and thinking and speaking. I may add thoughts there, or here.
https://girasoleazzurra.com/

06 June 2014 @ 10:04 am

My birth day  

Today is my 67th birthday.
I am healing and it is a rough and scary road. But I am on it, and I am moving forward.
Those that love me, love me fiercely. It gives me courage.
The old roses that have bloomed every year for my birthday since I was six years old have done it again. Huzzah!
Be kind. Today I want to spread kindness, more than any gift.

31 July 2014 @ 02:00 pm

Midsummer report  

The slow business of healing takes all my energy, and today is a shitty day. It saps thought, and sometimes hope. But there is no way to get through but to take it minute by minute.
And think of food. Thinking of food is always a joy and a distraction. There is chicken stock in the freezer, some roasted vegetables from last night’s dinner, and butter and cream. Tonight, assuming I can stand up for awhile, I will make pureed roasted vegetable soup, and it will be delicious, and it will cheer me and my beloveds.
But I do feel shitty today.

08 October 2014 @ 09:25 pm

Health issues some more  

A milestone has been passed. That’s good.
There is still a lot more to go. More doctors, more tests, more things.
I am so very tired. At the same time, I can feel the smallest bit of hope springing up. That’s lovely.

30 December 2014 @ 08:45 pm

Happy Birthday Patti Smith  

“I don’t fuck much with the past but I fuck plenty with the future.”

my rock&roll goddess and inspiration.
Just a year older than I am.
This endless, healing year is almost over, although the healing is not finished yet. I want it to be. I want to move lightly in the world, and I want my hair to grow long again.

04 March 2015 @ 02:06 pm

March 4, 2014 – March 4, 2015  

The weather is lousy in New York City – it has been a hard winter – and I am spending the day cooking. That used to be a favorite thing of mine. It is quite nice to be able to do it now. I am reveling in that.
Exactly a year ago today, I had the second of two surgeries that led, eventually, to chemotherapy, radiation, and a year of, if not hell, then very strong heck. You can read in many places about what this feels like, and I am still processing a lot of it.
I am in my sixties and small and round and pink. I still am those things – maybe a little rounder. I was vain about my hair, which was first chestnut, and then silver, and very long. I had a large collection of beauteous hairpins and clips. Last May I had to have my hair cut. It was one of the hardest things I have ever done. I had it cut two more times, but I never actually went bald. I had an absolutely brilliant hairdresser, too, and I bless and praise him. But my signature look is gone. I hope to live long enough to grow it all back.
I coped with the support of meditation, and generic valium. I had regular meltdowns. I had panic attacks and crying jags. I had, and have, them that love me.
I am so not the person I was. No one is, in their sixties, I venture to say. Today, though, is a milestone I am not entirely sure how to step past, except, of course, that after today, there is, thank the heavens, tomorrow.

March 2015 @ 05:11 pm

Things I am unable to do at this time  

I cannot do anything that involves a ticket to an event at a specific time and place. Each morning, I don’t know how it is going to feel to go downstairs, and make the tea and breakfast; I certainly cannot plan to attend an event so much as a week away. Or a day.
I am very tired. Usually I can do one Thing a day: making dinner, writing a picture book review, a half hour of meditation. Sometimes the one Thing is going into Manhattan and seeing art, having lunch. That usually requires that the next day I do pretty much nothing at all.  I have been permitted to have perhaps two drinks a week, and have welcomed bourbon and Guinness back into my life with glad cries.
There are a lot of side effects. They may go away in six to nine months. Or not. Some are small, almost inconsequential. Some loom large. Some days they are barely present. That’s the worst, because they are almost definitely going to come back the next day. Or the day after. My hands often don’t work. Neuropathy in my hands and feet make balance tricky (walking is possible with my beautiful rosewood cane, but it takes concentration). Everything takes concentration. That means that by 8 o’clock at night usually the best I can do is long for 10pm when I can go to bed. Sleep is often interrupted and dreams tend toward the bizarre, but it is far better than during chemotherapy, when I was often up for hours in the middle of the night. I would sit in our beautiful little study in the sweet dark, in touch with folk on my iPad Mini, TwinkleTwinkle, or just sitting. Healing. Pain might be weakness leaving the body, but healing takes a great deal of energy. It is hard work.
It is interesting to me that I wrote very little about this whole journey while it was happening, but now that I am post-treatment I feel the need to write about it. Possibly a lot.

21 July 2015 @ 02:32 pm

After it  

It has been nine months since the end of chemotherapy. It has been five months since the last radiation treatment. I look pretty damn good. I feel … it is difficult to describe how I feel.
There are a host of side effects that come with cancer treatment, and they are different, probably, for each person. And they linger. I know that my body will never be or feel the same. I am ok with that, mostly. I am in my late 60s, I don’t expect to feel 35. Or even 50. But there is a lot missing.
Yesterday I had a good medical visit with pretty good news. Then I had a really lovely lunch and a glass of Viognier with a beloved, and came home in the heat of a NYC summer day. Today, I am done. Spent. I do not have the energy to do pretty much anything at all. I do not have the concentration to read, or to meditate, or to watch moving images. I do not have the focus to do simple exercises or stretching. My joints and muscles ache, lightly, just to remind me, as they have since chemo, that my spirit is not in charge of them. My hands and feet tingle and burn, as they always do, and don’t quite do what I want. All of this is in the background, like slightly irritating music. On a day like yesterday when I have some energy and a push, it does not keep me from being out and about and intersecting with people. Today, though, when I am wicked tired – in part at least from yesterday’s focus on activity, movement, and thought – there is almost nothing I can do. As I sit in the study at home at this moment, noticing how much my hands ache as I type and contemplating how much my knees and hips are going to hurt when I get up, I am slightly surprised that at least I can still make the words come out.
So it goes. I read this over and cannot decide if I sound self-pitying or merely honest. It is where I am today. Thanks for listening.

13 September 2015 @ 09:08 pm

Baseball saved me  

We had a pink plastic AM radio in my mother’s kitchen when I was growing up, and some of my earliest memories are of listening to Yankees baseball games emanating from its small, tinny sound. (I still have the radio. It doesn’t work. It’s in the basement, and I cannot bear to part with it.)
In 2014, I had two surgeries, six months of chemotherapy, and about 28 radiation treatments. It was a very hard year. Most of the time, I couldn’t read in any sustained way, watch TV, sleep well, or Do Stuff. But half the year, there was baseball. I could always listen to my Yankees, or see them on TV, in Derek Jeter’s final professional year. No matter how stonkered I was, or sick and tired, there was baseball. Its rhythms and cadences soothed and calmed me.
This year, 2015, is post-cancer treatment. I rejoiced when the baseball season began, and each night I sink happily into my comfy chair in the study to listen, or watch, or just be aware of the music of the innings humming at the edge of my consciousness. When the Yankees are on the West Coast, I fall asleep to the sound. We are close to the end of the regular season now. Last year, the team did not make it to the postseason, evaporating my dream of Jeter and the beauteous Ichiro ending the year with World Series rings. This year, there is a pretty good chance that the Yankees will make it to October games.
I hope so with all of my heart. Not only because they are my team, but, personally and selfishly, the sound of their play means I can escape the constant monitoring of my physical self, and unite with the Bleacher Creatures and Twitterati and Suzyn and the good women on Facebook of She Loves the Yankees. Go Yankees.

10 March 2016 @ 05:42 pm

Come fill the cup  

For the fifteen months that I was in cancer treatment, I was unable to drink alcohol. I missed it terribly. I loved to have a Black Velvet (half Guinness, half Magner’s Cider) up the street at our local pub. I loved light floral white wines, mostly French and Italian, but some beautiful ones that were Greek and from New York State and Seattle and Vancouver. Most of all, I loved bourbon. I had numerous favorites. And I loved the occasional cocktail with Chartreuse or St Germain or Chambord or Cassis. And Dom Perignon!
There were few joys like sitting to lunch with a beloved, or a group of them, and wine. And cheer. I was very happy when I was able to return to a glass.
I am healing so very slowly. But I am looking forward to a new program of physical therapy that may help the persistent neuropathy in my hands and feet. The physician who began this process told me, gently but firmly, that it would be good to curtail alcohol, and perfect if I gave it up entirely.
Alcohol may exacerbate neuropathy. If it does, it does permanent damage. My neuropathy may get worse anyway, and the twelve weeks of physical therapy coming may not improve my hands or my feet or my balance. But I have to try.
This makes me cry. Being able to have that glass of Viognier with an apple and a piece of cheddar was such a great joy. It was proof that I was coming back to myself again. It needs to be banished once more, maybe not forever, but certainly for now.

30 March 2016 @ 08:15 pm

So here I am now  

This is not exactly an update.
I am better, even I don’t question that. But so much is the same. I still cancel plans as often as I make them. I still am good for nothing after about 5pm. I walk with a cane. Generally, I can do One Thing a day. It takes me an hour and a half to get from waking up to going downstairs to make tea and breakfast. I cannot make that happen any faster. I cannot make much of anything happen faster.
Much of the time, I cannot read, or write, or watch moving images more than about 20 minutes at a time. There are several reasons for this: macular edema, dry eye, chronic allergies. It comes from cancer treatment and probably a few other things.
I have moved to some physical therapy for balance and control, as the neuropathy in my hands and feet will probably continue indefinitely (forever). That has its own set of challenges, because managing my blood pressure has become an issue. I am taking enough meds so that I am muzzy and sleepy and sometimes dizzy. Every day. Most of the day.
This sounds dark. Well, it is. At the same time, I am reminded daily how far I have come. I have a cheerleader/prince/knight who reminds me that I am still here, still myself, and that if I feel diminished (and I do) not everyone shares that opinion.

28 August 2016 @ 12:59 pm

Post-cancer syndrome  

I resist calling cancer a battle, or a journey. It is the troll harrying our steps and making clouds of oily smoke over our decisions. It is the misshapen sprite that materializes whenever we try to envision an event next year, or even next month. It devours plans, and sometimes, hope. I am in recovery from cancer treatment, but the troll may never leave.

18 September 2016 @ 07:51 pm

Food and healing and other things  

I do love to cook. It’s harder to do now. Tonight I made chicken and veggies in cream sauce and James Beard’s magnificent cream biscuits. When I am tired it takes all my concentration, and tonight, with a recurrence of an instep strain probably related to neuropathy I was in pain. But I even made myself a cocktail (bourbon, ginger, agave, lemon, based on a lovely thing I had once at the late, lamented Campbell Apartment) and for dessert had another of those biscuits with sweet butter and honey. Yay me.
It was a fine dinner and I made it myself. Despite needing extreme focus when handling a knife (always a good idea) and having some difficulty bending the Cuisinart to my will (I won), I only dropped a few things and didn’t break anything.
I have had a couple of weeks of feeling, if not good, pretty much OK. That always makes me nervous, because I know it is not going to last. As soon as my foot started twingeing early last week, I knew what it was, and hoped I could head it off, but no. It takes a long time to heal. I cannot put weight on it without gasping but if I don’t move some, it swells and stiffens and gets worse. If I walk too much on it, even with the cane, it knocks my hips out of whack and then they hurt, too. I am looking at a long and fairly unhappy week. Damn.
I told a Facebook friend this week that my days of concert going are pretty much over. Certainly crowds and arenas are not negotiable any more, and as a person who generally cannot stir past the computer screen after about 5pm, evening music is not going to happen. So it goes. I get grumpy and whingey about it. I get sad. But there it is. It could be worse, and it has been, so I am trying to come to terms with that.

04 February 2017 @ 10:33 am

An anniversary, with Dragon Pearls  

On February 4, 2014, I had surgery to remove a fibroid at Mt Sinai in New York. The gyn and I expected this to be the end of a series of tests and procedures that had taken up the previous six months. As it turned out, under the fibroid was endometrial cancer. Still, the gyn (and I) were reasonably calm about it. If it hadn’t spread, a hysterectomy would take care of it. But it had spread, just to one lymph node, we discovered a month later in the second surgery.
So that led to six months of chemotherapy, and 25 plus three radiation treatments, that ended on February 6, 2015.
Today is three years since the first surgery, and Monday will be two years since the end of cancer treatment.
I am angry and depressed and outraged. I am uncomfortable and sometimes in pain and always kind of foggy. On Facebook and Twitter and on LiveJournal, we do curate our lives, displaying and highlighting the good parts and only so much of the dark as we feel we can safely share.
This is not a cancer story. I hate cancer stories. I have read a million of them, and they are all the same and all different. It’s not a battle. It’s not even a journey, although that is how I described it for a long time. Journeys imply a destination, and there is no destination here, there is no arrival.

06 February 2017 @ 06:39 pm

This post is a year old  

From Facebook, a year ago. These several days of anniversaries are rocky to get through.
February 5, 2016
It is never over. What cancer patients want to hear is, that’s it, it’s done, you’re cured. The reality is that each of those difficult treatments medicine uses to heal you has myriad side effects, both physical and psychological. Tomorrow it will be a year since my last radiation treatment. I had five months of chemotherapy before that.
So the past year has been followup with all four of my doctors, and a few new ones. I have a whole host of lingering side effects, ranging from merely annoying to debilitating. A lot of them cannot be fixed. Some of them may never go away. They affect everything I do and perform and think and act. Dammit.
This morning I complained to one of my beloveds that I was afraid I wasn’t very interesting anymore, with most of my attention and energy focused on fixing or at least mitigating what was broken. His every word and action indicates that is not true. But I am not interesting to myself so much, and I cannot change that until more healing takes place.
Facebook is a true blessing for me. I know I can send these words out to people who care to read what I write, and some of you will write back or ask questions or just remind me that I am truly still in the world, and that it matters.

03 March 2017 @ 05:09 pm

I did not expect this  

I carefully mark the days of February 4 & 6: one is the anniversary (2014) of my first surgery and one is the anniversary (2015) of my last radiation treatment for Stage 3 endometrial cancer.
I did not expect the anniversary of the hysterectomy, the second surgery, to hit me hard this year. That date is tomorrow.
I did not write about it as much during that first year as I have since. March 4-5, 2014 was one of the worst days, and definitely the worst night, of my entire life. I am realizing as I type this that I cannot write about it even now.
Today I have been weepy and sad and cold. I am having flashbacks to that endless day (surgery scheduled for 11am but didn’t happen until 5pm) and that terrifying, endless night. I wasn’t supposed to be in the hospital overnight and no one was allowed to stay with me. I have to write about this at some point but it is not now. I have to write about it because using words is what I do. The word is my sword.

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