At last, a dream!

I finally had a dream, or at least was able to remember one.

I was walking in a beautiful garden, but it was a "cartoon" landscape, kind of a Pixar-animated garden, not a real one. My hair was longer and blond, and was fanned straight up and out from my head. Each strand of my hair was held out by a large black-bodied butterfly with yellow and white wings, so I was actually walking with my head in a cloud of thousands of these butterflies.

I stopped walking when a formation of these butterflies parted out and sectioned my hair on the top of my head, and I remember thinking "this is going to hurt," when they suddenly flew outward and pulled out the first section of hair from right on top of my head, just behind my bangs. But I felt no pain, and I watched as they flew away with that section of my hair over to a grassy mat of cartoon lawn and laid it down.

One butterfly folded his wings and started barking orders, while the others who had flown away with my hair started flying in-and-out with each other, weaving my hair into kind of a "potholder" thing on the grass. At one point, the foreman looked up at me (still with all my hair suspended around my head by all the other butterflies), and signalled to another management type I couldn't see. No, he didn't need any more hair, that would do it. Fade out.

Mom, the interpreter of all our family dreams, says this is SO easy. The butterflies are all the doctors who are using all their skills to "fix" me. From that, she says, I can figure out the rest.

So, off I go today, back to Virginia to continue the process of getting fixed. Bill and Echo are coming, because this will be a two-night stay and I probably will not feel up to driving on Tuesday after my tests on Monday. I am not tired of the drive yet, but I am already tired of the food offerings along the way. Today, I will pack a picnic lunch of real food so we can eat outside at a rest stop and enjoy the sunshine.

Waiting

I had a lovely drive home yesterday morning. Autumn is already starting up north in Charlottesville, and the leaves were swirling around in the wind and sunlight along the sides of the highway, dancing under truck tires and flipping across the lanes. It turned cool last night in Tennessee too, and the light that is coming through the skylight is thinner today than I remember just a few days ago.

This always used to be the saddest part of the year for me in NY. While the colors were glorious, there was the omnipresent gloom of endless winter lurking under the surface of the still warm days, the pressure of time to hurry up and get things done before the darkness and cold descended. I had a hard time enjoying the last bit of sunshine and warmth, because I knew "IT" was coming.

Metaphor, anyone?

Well, surprisingly, not so much. I found a measure of courage somewhere in the last few days, and somehow stopped being so terrified of the unknown of what-is-to-come and what-will-be. I am enjoying almost every bit of every day, and look forward to each new day. I want to get started so I can get through it and get done.

I was able (finally!) to open some of the literature they gave me at UVA and read about my disease, and knowledge does indeed counter much of the fear. There is not only a hope, but now a certainty in my mind that I can beat this.

Meeting a real person who has been there, done that, and made it through to the other side of treatment helped immeasurably.

Getting the MRI actually done now means that we are on the road to doing what we need to do, and that the process has begun. The process will have a middle and an end too. My impatience will just have to go on hold, and I will just have to let the days unfold one at a time.

MRI Today at UVA

I'm an old hand at MRIs because of my neck surgery. I can lie perfectly still for 35 minutes without twitching or getting claustrophobic, no problem. This one was new though, because I was face down, earplugged, muffled and cushioned with rubber forms and pillows, and buffetted by a breeze blowing through it--very weird. It was interesting trying to stay perfectly immobile and still BREATHE (I don't really think they expect you to hold your breath for 35 minutes, do they? They must calibrate for chest movement so you still get oxygen, right?)

Then afterward the tech told me I might have some trouble getting through traffic--seems that Bob Dylan is in concert at UVA tonight.

Not that I had a choice, but I had a hard time deciding which I would rather do: listen to that old fossil sing? Or lie swathed in a windy tube making up my own harmonics & tunes set to the rythyms generated by the MRI, sort of a "Blue Man Group" medley, or a vacuum cleaner -humming game?

One test down, many more to go. Setting out for home tomorrow morning.

Waking-up thoughts

I think I must have known something was coming, something that was going to require my full-focused attention.

I didn't want to go to Singapore with Bill this summer, I wanted a driving trip out west. It mystified him. He really couldn't understand why I didn't want to spend $1600 to fly 26 hours, literally half-way around the world, to be in a city he really likes, to sightsee on my own and see him 1-3 hours a day between his exhausting 12-hour shifts + 2 hour-long bus commutes to & from the shipyard. No, I wanted to drive all the way across and around the country, just me and my dog, to see my mother, my brother and his family, beloved old friends and my kids--not for anything special--just to be with them in their everyday lives.

I didn't understand why I didn't want to go to Singapore either, I just knew that I didn't.

Instead, I racked up 8,998 miles in two months (necessitating new tires upon returning home--and boy, wasn't that a good idea too!), saw almost all of the people I wanted to see, and did almost all of the things I wanted to do.

I'm glad I did it. It's exactly what I wanted to do. I think now that I needed to do just that, to get ready for this.

Getting set to travel tomorrow

Today is a get-things-done details day.

Bags to pack for overnight in Charlottesville, one of which I will just leave there with clothes, toiletries and other stuff for Echo, Bill & I to have up there over the next 2 weeks of trips.

The ubiquitous dishes & laundry, paying bills, calling the insurance people, picking up the clutter.

Finish drywalling the other upstairs closet, finish painting the first one. Bill can sand my taping job and paint the last closet while I'm gone, or if he has his own list, I'll do it when I get back on Friday. (You wonder, "why is she worried about closets at a time like this?!?" It's because we were going to have the carpeting replaced upstairs in the loft where we now sleep--it was originally scheduled for installation tomorrow, but that went by the wayside pretty quickly. Now we're thinking we'll have it done when we're up in C'Ville getting surgerized, so that when we come home, we will have the bedroom downstairs next to the bathroom for recovery time, and the loft will be for visitors and/or caregivers).

Bill and I decided that I will go up alone tomorrow for the MRI and he will stay home with Echo and get things done too. There was an errant thought that he would go up to Illinois this week and help his Dad clean out the family house--he was slated to go up there the week I was diagnosed, then cancelled--but that just didn't happen. Ray and Joe have been visiting, looking at properties, checking Ray's house here in Rogersville, and generally keeping us laughing, talking old times and having some fun. It's been great having them here during this "waiting" week, and they are going home tomorrow to California.

I feel myself going into "organizer" mode. It feels good to be actually doing something to move us forward. The only way to get past this is to keep moving toward it and then through it.

I'm feeling very positive today, thanks entirely to a new friend I met with yesterday. We had coffee at the new Community Cup shop on Main St. and she shared her experience and strength with me, answered my questions and fears (the ones that only women who go through this can know and answer). She gave me practical advice on what to do and when to do it (things I never would have thought of, like getting my teeth cleaned before the surgery!) She gave me the positive energy to get going on fighting this monster, and showed me an example of how to do it with style and grace. I realized later that I must have worn her out--we talked non-stop for 2 1/2 hours--but she gave me a gift so valuable, I can only marvel at her generosity of spirit. Thank you, M, thank you.

So, off to start my busy day.

Sleeping

People are always asking me how I am sleeping. I ponder the dual meaning of that question: It could be "how in the world ARE you sleeping?" or just "are you able to sleep?" It's actually a great greeting question, (so much better than "how are you?") and it reminds me that in order to be strong and able to deal, I should be paying attention to getting all the good sleep I can right now to support a positive mental attitude and optimal physical fitness.

The answer (you were wondering when I was going to get there...) is surprising even to me. I'm sleeping great. I love to sleep, I always have. My mom tells me that when I was born, they had to wake me up to feed me. I have had periods of insomnia in my life, but this isn't one of them.

I think I'm sleeping really well right now because it's a warm cocoon where I can go and not have to think about this at all. I sleep straight through the night, dreamlessly, without tossing or turning or waking in the night. I fall asleep almost instantly, within a minute or two of curling into bed. When I wake, usually between 5 - 6 am, it's like a light switch turning on--my eyes open, I'm instantly alert, and usually, that's it for me--no dozing for another hour in a snugly half-dream. This is all a new pattern.

I have to be sure to get to bed at a decent hour now in order to get the sleep I need for the day, because I know I will wake up not in a set number of hours, but somewhere in that dark predawn, whether I go to bed at 8 pm or 1 am.

I have NEVER been a "morning person." Now I'm the chipper early riser I used to grumblingly curse under my breath as I desperately stumbled around for coffee. When the kids were infants, I used to weep with fatigue some days, wishing for just an hour of horizontal-close-my-eyes relief. All those school years when the alarm would go off at 6:30, I'd stagger to the shower, toes curling up in dismay on the cold bathroom floor, hoping that a hot shower would rouse me to some sort of consciousness required to get the kids fed and ready and out the door with a forced cheerful word or two. In winter, I'd be like a hibernating bear, requiring 8, 10 even 12 hours a night, just to feel vaguely human for the short daylight hours available. In the summer, I'd lie there snoozing in and out of consciousness until 9 or 10, relishing every bit of time stolen from the day--all because I love to sleep!

Now, I'm loving being awake in these late-summer early mornings here in Tennessee. The sky starts turning pink through my skylight, very gently at about 6:45. Then the light creeps up, slowly revealing the mountains, sometimes swathed in humid mist, sometimes clear. The owls stop hooting and the chickadees start chirping. It's a great way to start the day.

And now, I'll go make the coffee (without desperation).

I did all the right things and still got the disease, why?

I was able finally to connect with a dear friend last night from the old days in NY and tell her the news. It turns out that she's been going through her own fear-denial over a questionable mammogram and is going back in for a recheck this Friday.

We talked about feeling so incredibly uninformed at this point, after having spent so many years being (we thought), militant advocates for our own health care. We did all the right things and thought all the right thoughts. We questioned our doctors, got regular check-ups, ate the right things, exercised regularly (well, we mostly did but we also felt guilty when we didn't!). We breast-fed our children, being told that as a bonus, we were preventing breast cancer. We got off birth control pills as soon as we could. We didn't take estrogen when we became perimenopausal, gutted out the night sweats and the flashes. We complained about getting mammograms, but we went and got them anyway. We thought we were being excellent, in-charge-of-our-own-bodies women!

But there were some very basic things that we were never told, and now after only a dozen days on this roller-coaster, I am amazed at what I didn't know, or what I refused to look at.

For instance, in the back of my mind I already knew that more than half (and in some studies, almost 75%) of cases being diagnosed now are women with ZERO breast cancer in their families. Yet the chart on the wall in the gyn's office always lists "History" as the #1 major risk factor for developing breast cancer.

I did a 20-page college research paper back in 1994 on breast cancer and the suspected link with chemical compounds known as organochlorines. I remember being amazed at the preponderance of evidence between cancers of reproductive organs in both sexes and these compounds that are pervasive in our modern life. (Think anything that has been bleached, disinfected or processed to be clean or white, like paper products from coffee filters to tampons, and water supplies). I lived in a paper mill town for 16 years.

I worried about being mammogrammed too, though I did it when my doctor said to. I didn't think it was a good idea to be irradiating breasts with abandon. I was mammogrammed numerous times back in the 1970s when the technology was in its infancy, and radiation levels were way higher than they are now. We absolutely know that radiation exposure is cumulative and it causes cancer. Now I wonder if the radiation exposure of the tests themselves might be a causal factor too.

What I didn't fully realize until now is that mammograms are not a diagnostic tool so much as a "screening" tool. Mammos are also a legal cover-your-butt tool for the medical profession (which I actually did figure out about a decade ago). They have to follow the guidelines and recommend annual mammograms, so that if you do develop a problem, they can't be accused of negligence.

I also realize now that risk factors and mammograms are primarily used for separating large numbers of people into statistical groups, and ranking them according to possibility and probability of developing the disease. The tests are relatively cheap, most insurance plans cover them, there are programs for getting mammos free if you have no insurance, but the mammo isn't really a great diagnostic tool, it's just a first-step "snapshot" of who to look at further. How did I not develop that thought until now?

So, why do they call you back for more mammograms when the first one is questionable? Why not just go to the next step--cover you with cold goo and ultrasound you? Well, that's more expensive (although there's no radiation), and a fair percentage of films are flubbed because of human error in taking them, and they are still looking to screen out the "that's fine" from the "maybes." The ultrasound test is reserved for the "probables," and sadly, that may be too late for some women by the time they get to that step.

Here's a note I found on one radiology report from 2000: "Recall that approximately 8% of breast malignancies are NOT detected with mammography."

I never knew that. I was never told that. This stuns me.

It seems to me that the big push has been to get women to get mammograms, and that's certainly a good thing--it's better than nothing. But it's implied that mammograms are a silver bullet that will solve all of our breast cancer worries. We are told that mammograms save lives, but I was never aware of the test's limitations or its primary function until now.

Our Tentative Schedule

Here is where we will be for the next few weeks, subject to the whims of med persons, of course:

Thursday, Sept 27 - Traveling to Charlottesville in the morning, staying overnight
Friday, Sept 28 - Traveling home to Tennessee
Saturday, Sept 29 - Home in Tennessee
Sunday, Sept 30 - Traveling to Charlottesville in the afternoon, staying overnight
Monday, Oct 1 - At UVA all day, staying overnight in Charlottesville
Tuesday - Oct 2 - Traveling home to Tennessee in the morning
Wed-Sat - Oct 3-6 - Home in Tennessee
Sunday, Oct 7 - Traveling to Charlottesville in the afternoon, staying overnight
Monday, Oct 8 - At UVA in the morning.

Phone at Home in Tennessee - 423-921-3774
Phone on the road and in Charlottesville (cell) - 423-923-1071

I'm going to try this "blogging" thing, despite the fact that Bill hates even just the word "Blog," for reasons beyond my understanding. Much of what has happened in the last 2 weeks is beyond my understanding too, so perhaps there is symmetry there.

I have been diagnosed with breast cancer, and am still trying to process that fact.
It IS a fact, despite my inner voice telling me that "no, no, that's not my ticket number, I didn't even enter the sweepstakes!" My life is now completely out of my control (as if it was ever really?), and I keep telling myself the words of Bette Davis' scriptwriter, "Hang on, it's going to be a bumpy ride."

Life is going to get complicated and communication with family and friends spread all over the country is going to get more difficult. I've decided to use this forum as a way to keep everyone informed (whoever wants to be), and also as a self-edited journal for the days ahead. That way if I am unable to answer emails personally right away, you'll know what is happening.

Here are my self-imposed rules --My rules, because it's MY BLOG (there Bill, I said it!):

I will not be writing my deepest darkest thoughts, though I doubt that I'm going to be insufferably perky either. I'll try to write as objectively as I can, and what I write will be the truth but not always the WHOLE truth. If a post is gloomy or gross, I will warn you up top so you can decide for yourself whether or not you want to read it.

You are allowed to post questions or comments for me on the blog--be aware that they will be able to be read by other visitors to the site. If you have a private question for me, please email me at pamsink@gmail.com and I will get back to you the soonest I possibly can, and it may be a day or a week or two.

You have my permission to give others this blogsite address, if you think it would help someone you know who is going through the same thing right now or in the future. Please do not give this blogsite address to people who are past-survivors, cure-mongers, cult-followers, or anyone you don't know personally--if in doubt, send me a private email first. This is for family, friends & myself.

Other than that, anything goes. You can take this "journey" with me or not, your choice--and believe me, if you don't want to, I understand THAT feeling completely! I would rather be doing anything but this, but I don't have a choice.

Welcome, and thank you--I treasure your friendship.

Pam