Monday, December 31, 2007

The last day of an interesting year

I'm big on closure. I like wrapping it up, saying something profound at the finish, having a stirring conclusion to a story, a tidy ending, a resolution. Life isn't like that and this year won't be like that, despite the calendar changing and a new year beginning.

Eight weeks out from the mastectomy and six weeks since my last surgery, I'm starting to feel human again. I have function and some flexibility in my arms, and energy to last the day (usually without a nap). I can get deep, restful sleep for an hour or two on my sides at night before waking and having to turn onto my back again. I can breathe deeply and hike up the hills below and behind the house without collapsing. It isn't the end of the story, but it's a good beginning.

I spent most of 2007 in blissful ignorance of what was to come. I saw my children in January in TN, and again in their new home in Seattle in the summer. Friends came to visit in the spring. In the summer, I travelled almost 9,000 miles of our amazing country with faithful dog Echo, and later added husband Bill on the return journey home. I found old friends that I hadn't seen in many years and had a month in my childhood home, just being with my Mom. I had time with my brother and his family, and visited treasured family friends. I got to see Yellowstone with my husband for his first visit, and found it remarkably unchanged from my time there, almost 30 years ago.

It never occurred to me--EVER--that I would come home to find our lives changed forever in September, with a diagnosis of breast cancer. I flowed through my days thinking that everything would be the same, that we were somehow immune to the challenges and crises that others have faced or will be confronted with? My life was set, I had all the pieces in place at last. Children grown, gone, and independent, over the adjustment of the move to TN, learning the skills I needed to repair and renovate the house, getting ready to develop the acreage, and learning how to be a "just a couple" with my husband. I'm thinking now that life has a way of smacking us around when we are that complacent!

I've been deeply shaken by this awfulness, and feel rather fragile right now. I put on a good show of bluster and confidence, but some days I still just can't believe how quickly and profoundly my former life got smashed to pieces. The feelings of loss for that simple happy ignorance and the rage at my body betraying me at this point in my life are still there, and probably always will be there in the background.

The only resolution is this: None of us gets to choose what happens to us. All we get is the decision on how we are going to deal with whatever gets handed to us.

**************************

Things are going to start happening again next week. Test results will start coming in again, and decisions will have to be made about what comes next. I have posted the Schedule box up top again so you will know where I am and what is happening. No tidy conclusions, just a continuation of the process. That's what life is about, for now, and I'll just keep marching onward.

Sunday, December 30, 2007

A voice from beyond...

Jean and I were having a late, light dinner last night when the phone rang.

Bill's voice from half-way around the world! He finally has possession of his long-lost seabag, which means he now has comfortable, Western-style underwear and his essential Swiss Army knife that I gave him for our anniversary. Earl finally made it to the ship (he missed his flights two weeks ago due to the same weather that delayed Bill), which means Bill won't be doing two jobs and only be paid for one.

Although we email every day, it still was great to hear his voice, now finally rid of that blasted cold that felled us all. Mom is home safely too, after a grueling 12 hours of delayed travel back to the West Coast. Ah, everyone in their appointed place!

Another quiet, cloudy day at what Bill calls "La Casa Redondo." It occured to me that many friends and relatives have heard about our round house, but not seen it. Thanks to MaryAnn and her excellent photography skills, I will post pictures, though I cringe at the dilapidated appearance of our abode. All of our efforts have thus far been concentrated on making it liveable, not yet on making it attractive with that all-important "curb-appeal." (As if we even had a curb). The new roof a year ago was one of those essential improvements (now I can use my pots and pans for cooking instead of catching drips when it rains), but I can see in the pictures how desperately it needs paint (and how about cleaning up that yard-trash too, Pam?) Maybe when Bill gets home in the spring I can tear him away from the History Channel and slap a paint brush in his hand?

Saturday, December 29, 2007

Old Friends, New Friends, & New Insights

It seems strange in a way, to think of my mother as one of my best friends. When we got over just being mother and daughter and I started looking at her as a real person with a real life (other than just being my mother), we were able to become friends starting about 30 years ago.

We slip into old parent-child patterns still, but the friendship continues to grow. I am amazed at her abilities and skills, and encouraged by her outlook on life. She is the most open person I know. She actively seeks adventure and new experiences and has the unique ability to constantly challenge her own assumptions, even when it's uncomfortable. She has zest, and she is interesting and interested in everything around her. It was great just being around her.

Mom introduced me to Mary (whom she met on the plane coming to TN), who introduced me to Val Donna and Gail. We spent a wonderful afternoon just chatting and sharing experiences. Once again, I am reminded that there will be an end to the immediacy of dealing with Breast Cancer. There is life after, life beyond, and this experience will fade, just as the pains and inconveniences and scars do with time. Whatever our place or time, we are all warriors, but we do get to go home after our battles and resume something that resembles a full and normal life.

Younger or older, unique yet somehow connected, all of us get touched and tested by this experience, either ourselves or through our friends. Our partners, our children and our parents go through it too, each in his or her own way. We are changed, and we are still here, picking our way through a minefield of emotions, finding a path and living well, despite the uncertainties of the future.

"You're going to be just fine," Mom and these lovely ladies told me. I am so proud to call them my friends and I believe them.

Thursday, December 27, 2007

Another busy day

We had a fun visit with Jean last night and then this morning, MaryAnn came for coffee too! Jean decided to continue on to the Outer Banks for an exploration. Autumn and Echo managed to find some accommodation with each other. I'm just thankful my big dog didn't eat Jean's little dog! She will stop by on her way back to Kentucky, so we will have another chance to visit in a few days. MaryAnn and my mom have become fast friends as well.

Mom and I are off to Kingsport this afternoon for a look-see foray into wig shopping and a visit with Mary, whom Mom met on the plane coming out. She's a 6-year survivor with information and a circle of friends to share with me. We somehow manage to find each other and connect. Despite the shock and trauma of this stupid, senseless disease, something good comes out of all of it. I cling to that.

I can't believe that Mom must return to her life tomorrow. It's been so great to spend time together, and it will be hard to say goodbye. I know I must deal with the "living alone" thing again, but it will be weird after having constant companionship and support close at hand for the past 5 months. I'll probably end up talking to the dog to ease the silence, and then everyone will be concerned about my mental health as well!

Wednesday, December 26, 2007

Boxing Day

I don't know why its called "Boxing Day," I will have to look it up. I suppose it doesn't matter, we're not British, but these bits and snatches of arcane information float around in my brain, taking up space, just waiting to be shared. So Happy Boxing Day, whatever it means!

Another cold, clear day with lots of sunshine. How happy I am to be here to enjoy it.

Cousin Jean is coming for a one-day visit. Always a good time. Mom and I will do some errands this morning (laundry always looms), we will take a walk in the afternoon with the dogs, and plan for a rousing Scrabble game tonight.

Quiet day, peaceful day. A little work, a little physical exercise, a little fun.

Tuesday, December 25, 2007

God Bless Us, Everyone

I'm not a big fan of Dickens, but here I've chosen him for today's quote and title. Maybe I'll read him again this year and try to like him better. It's a beautiful Christmas Day, and I've vowed to spend today in a state of gratitude.

I've spent more time in churches this week than I have in the past year. Not a bad way to spend the week preceding Christmas, listening and singing to music and reflecting on what I have to be thankful for. So here's a partial "thankful" list:

Invigorating weather, without having to shovel snow!
Being together with Mom, to share laughter, stories & fun!
A faithful, ever-loyal, and working husband!
Independent & interesting children, who make me proud everyday!
Loving, caring friends (who are sometimes relatives too)!
Competent doctors & nurses who have gotten me through the hard parts of this year!
Increasing physical strength and mental toughness!

So here's hoping you have a wonderful day, and have as much to be grateful for in your life!

Monday, December 24, 2007

Christmas Eve Day

Christmas Eve Day dawned cold and clear here in Northeast TN, with brilliant sunshine, streaming in the windows, and 25 degrees at 8 AM.

I can't quite believe that we're here already, at the end of the year that I thought would never end. One day at a time, and now it is almost gone. This is a year I'm sure I will never forget, and I'm looking forward to writing a new kind of story next year. A movin'-on tale. A "what's next?" missive. I'm ready to roll up 2007, put it in a box and store it in the back of the closet, never to be dragged out again!

Happy Christmas to all, and looking forward to a GREAT 2008! (Hey, it even rhymes)!

Sunday, December 23, 2007

Sometimes even normal?

Just the past few days, it has occurred to me that I am getting to the point that these "things" on my chest aren't making themselves known every minute of every day. Almost real and normal, like being able to go through the day not thinking about my bust at all.

It helps that the stabbing pains, the burning chafes, the achy twinges and the sharp pulling and pressure are lessening each day. The swelling is down, the stitches don't itch. I can actually "forget-about-it," at least in the mornings. Amazing. I can now see that there might be a time when these become part of me to the point where I don't have to think about which way to move, what I can or cannot do, where I don't feel "OW!" or anticipate an "OUCH!" That would be terrific and go a long way towards feeling whole again.

Our days are quiet here in the woods, but we're having some fun too. Lots of books and movies and music. A little bit of exercise too, with Echo to walk daily, and the treks up and down the stairs in our daily chores. I hope Mom doesn't find it too boring--I find it refreshingly peaceful and stress-less. Not a bad way to spend Christmas...Peace & Joy and all that.

Saturday, December 22, 2007

Solstice

Is today the Solstice? Anyone? It must be, the nights are so long, the days so short. It's amazing that I get anything done at all. With my love of sleep, I think I could just snooze the whole winter through, if life's details didn't beckon.

Walking in the woods yesterday, I heard a sound I had forgotten in our drought--Devil's Nose Creek, babbling over stones for the first time since last April! One of the exposed stumps in the pond is now submerged, giving a visual measurement that we are finally getting water back in the well, back in the pond. Rainy days are gloomy and sleepy, but I'll put up with them if I can replenish our water supply.

Bill is settling in on his ship, destination undisclosed--it's classified, and I'm fine with that. We can still email each other everyday, and I read his brief messages each morning while drinking my coffee. What a boon! All those years before email, we were lucky to exchange one or two letters, and perhaps a crackly phone call (made from a post office, where you pay your money and wait for 4 hours to be connected) in 3 months time. Technology certainly changed our lives for the better. I suppose he could get an international-type cell phone if we wanted to bear the expense, but email seems to suffice for our communication needs.

Today, Mom and I will shower (still a joyful event to look forward to, after our trials of last week!) and go to the movies this afternoon and a music concert tonight with MaryAnn, at the Methodist church.

Moving through the days, one by one. Stopping to breathe in the small amount of light that Winter's shortest days allow. Thankful for all the small things that bring a measure of contentment and happiness. This is what life is made of.

Friday, December 21, 2007

Getting Organized

Mom is helping me get organized. The paperwork was getting unmanageable, piles of bills to be sorted and filed, receipts for gas & meals from our trips to Virginia, papers from the insurance company, medical monographs for information and notes of things to ask Dr. DaSilva. All of it in a big pile of "To be Filed."

We put together a binder, organized by date, pages for each trip with mileage and receipts stapled to the page. Bills and Explanation of Benefits all together, so now I can see if the insurance has paid, and what is still owed. Now I can FIND stuff!

It's a full-time job, keeping all of this straight. How do people do this and still manage to work, raise families, keep things semi-normal? I am so lucky that all I have to do is concentrate on getting well! I don't think I could do this and handle anything else right now, it's so overwhelming. Yet, so many women go through this alone, or do it and manage to keep all the balls juggling in the air at the same time. I just shake my head in admiration.

Mom has also been helping me get items organized and ready to sell on eBay, light things that are easy to package and mail. She catalogs them and alphabetizes them, and each morning I type up a master list with her additions. We work well in coordination with each other, if not actually "together."

Today, I feel the need to get festive for Christmas. We will trek off to the grocery for baking supplies (I've misplaced my powdered sugar) and bake cookies for friends. With carols playing in the background, 3 Netflix movies waiting to be watched, and the smell of holiday spices baking--that should be just about right!

Thursday, December 20, 2007

Things To Do During & After Cancer

The busy-ness of the last few days has convinced me that I need to be doing something besides just sitting around, waiting to recover strength and define my new normalcy. Don't get me wrong--my days are full and long--I bathe, I exercise, I cook & eat, do household chores and daily clean-up. I read, I write, I shop for provisions. But at the end of the day, I can't say I've really accomplished anything productive or of lasting consequence.

When I was sitting in countless waiting rooms at UVA, I started a list: Things to Do After Cancer. It was an exercise in positive thinking, hoping really, that there would be an "after" in which to do all the things I want to do with my life from now stretching far off into a long future.

Now I'm thinking I need a different kind of list: Things To Do During Cancer So As Not To Be Dwelling Constantly On Cancer. I need a project, a goal, an occupation, an avocation.

Maybe the trick is to forget about making lists and just get going on the "Doing."



Postscript: For those who have inquired, Bill finally made it to Japan and his ship after 3 days of travel by planes and hired cars. His luggage is still lost in the maw of airline travel, but he bought some clothes at the Navy base and sailed anyway. Perhaps the shipping agent will get it for him and to him when the ship returns to port. In any case, my sailor is now on the briny deep, and doing the work he does so well.

Wednesday, December 19, 2007

Attitude

It occurs to me (duh!) that in the throes of plumbing hell, I haven't spent much time at all in the past 4 days ruminating about myself or my disease. I have not had time or inclination to deal with "how I feel" or "what the future will bring" or anything but getting the right people out here to fix my septic system.

Keeping busy with the details of life has a salubrious effect on attitude. Yes, it's been stressful, but it sure beats dwelling on oneself ad nauseum to the point of self-pity and despair. And to be honest, those times have been mercifully brief, and lessen with each day passing.

My default position is optimism--it just makes life so much more fun! While complaining creates better copy and funnier jokes, it colors outlook and promotes a spiral of negative thoughts. I just don't want to go there, now or in the future. I feel stronger each day, and the small things I have to put up with are no big deal in the long run.

I have so much to be thankful for, and that's where I want to concentrate my energy. I look at it as a matter of choice--I don't have any control over what happens to me, but I do get to choose how I will feel about it. I want to be thankful everyday for what I have, and move through the world with confidence and verve and zest!

Tuesday, December 18, 2007

YES!

Plumbing all fixed. Future problems prevented. $225. Priceless!

Plumbing relief within reach...

I know, I know. I said I was moving out if the plumbing wasn't fixed yesterday, but there were mitigating circumstances. The septic guys came. They pumped. They even put a ladder inside and went down into the [pardon] bowels of the tank. There's a job we can all be grateful that someone else does for us.

There was a collapsed inlet pipe that needs to be replaced. I called the plumber who was at the town jail, dealing with frozen pipes. He said he could be here first thing in the morning. Whew.
Then last night, he called back saying he couldn't make it, I'd have to find someone else because his biggest commercial account, TRW, had burst pipes that would take all day. At least he called. He recommended a friend who is an excavator, and that fellow said that he could come out, depending on whether it was warm enough for his 'quipment to start.

Mom and I got up early, packed some stuff and went off to Ray's rental house (still being readied to rent) for running toilets and copious hot water showers. Wow. That feels good! We stopped at the laundromat for a quick load of wash and zipped home to walk the dog and dry the wash. And wait for Mr. Excavator, "Bo."

Bo came at noon and excavated. He fixed the collapsed inlet pipe. In the meantime, I went down to the basement and found water all over the floor, backed up again! Apparently the water softener did its programmed regurgitation thing last night and filled the pipes with water again, and it was still not draining right. I showed the guys, and they had no snake, but wait! Bill bought one on Saturday (but didn't tell me where he put it), maybe I could find it? Amazingly, I did spot it, and they snaked out 50 feet from the floor drains. No luck. They snaked it from the septic end and ran into a solid clog about 2 feet from the end. "Am I going to have to call someone else?" I asked. "Maybe..." Bo said.

He made a hook on the flat end of the snake and managed to pull out the clog, and leapt out of the way as about 50 gallons of effluvia gushed out of the pipe. This has been clogged and broken for longer than we've lived here, he said. I'm convinced that all it took to make it quit completely was Bill getting on a ship.

Now my plumbing "heroes" are out getting the parts they need to finish the job, and it looks like we'll have a working system again (crossed fingers) by tonight. If indeed this is the end of this plumbing nightmare, whatever he wants to charge me is just fine. I will write the check and wish him a Merry Christmas.

Toilets. Running water, hot and cold. Yes, it's the little (and believe me, they are not so little anymore!) things in life I am so grateful for!

Monday, December 17, 2007

Day 3 of No Plumbing

Today is the day I either get this fixed or move out. I don't mind "camping" that much, but it's below freezing, and this is a major problem for Mom. Now we're talking about cutting back on our food and fluid intake to avoid having to "go outback."

Bill's flight was delayed in Tri-Cities because of snow in Detroit, but I saw online that the flight finally left at noon, and a later flight to Tokyo was delayed there to give those passengers time to make it. Last I saw, he left Detroit around 4 PM for the Orient. I trust he was already exhausted enough to sleep the whole way across and will arrive sometime tonight (which will be tomorrow night for him).

I finally have THE COLD that he and Mom had last week. Merry Christmas, everyone. I fought it valiantly for as long as I could, but the intestinal bug wiped out whatever resistance I had, leaving me open for the rhinovirus. Swell.

Just got a call from the septic service and they are warming up the truck now. All together now, "Hallelujah!"

Sunday, December 16, 2007

Winter Comes, Bill Leaves

"Baaaaad" weather was predicted for this AM, and it was raining fairly hard when we left at 4:45. Ten miles out of town, the driver's side windshield wiper did a flip in midair and came down like a goose shot out of the air--flap, flap, flap. Bill shut off the wipers, rolled down the window and tried to steer down the highway with the rain pelting in his face. Hasn't FATE had enough FUN with us this year?????

We made it to a gas station with many lights outside, and a sheriff idling in the lot jawing with the attendant. Alas! The days of the "service station" are past us. The cop drove away, the employee went inside out of the rain, and Bill managed to snap the wiper back together again by himself. Back on the road, for whatever more adventure awaited us on the way to the airport.

We made it to the airport on time, just as the rain stopped. All of a sudden, a huge blast of cold wind whipped through the area. All the lights in the parking lot went out, and all the electronic parking meters when down. Yeah! Free Parking!

Bill is now on his way to Japan, a torturous trip that will last 26 hours and deposit him across the globe two days and an afternoon from now. I drove back to Rogersville, went to mom's motel and had a hot bath AND a shower. We also had "complimentary" breakfast there until someone came in shouting "It's SNOWING outside!"

I looked. It was melting as soon as it hit the ground, but I suppose it had come down as snow at some point. These good people in TN have forgotten what snowing really is, but there was a bitter, chill wind brewing, so we came home to the warm, round house (the one with the non-working bathrooms and sinks).

Mom and I will figure out what to do for tonight (I'm thinking of getting out the entrenching tools and pocket TP packs, we weren't Girl Scouts for nothing...) and hopefully we will resolve our plumbing problems tomorrow.

In the meantime, the sky clears, then clouds, then spits cold wet stuff, then clears again. Winter.

Saturday, December 15, 2007

Bill Leaves, Plumbing Goes on Strike...

It had to be. Every time Bill leaves on a ship, something dire or inconvenient happens with the house. In NY, it was the appliances that quit working 6 hours after his plane took off. I remember one winter (thankfully) that the refrigerator quit--I kept things cold in the snow for a week or two until I could deal with repair or replacement. We had two washers and two dryers, and just kept switching off--each time Bill would come home, he'd repair the broken one and we'd have two again until he left, and one would quit again.

We were lucky today. The drains clogged the day before he left. Poor Bill spent his last day wading in water, renting a snake, then buying a longer snake. He gave up about the time he needed to pack his seabag (he leaves at 4:30 am) and I took Mom over to the Comfort Inn and got a room for her to stay in tonight. At least we'll all be able to use her bathroom and shower over there until I can get a plumber out on Monday. Apparently, all Tennessee plumbers went Christmas shopping today and weren't answering their phones.

What a day! Just goes to show, the fun never stops!

Friday, December 14, 2007

Better today...

I just felt awful yesterday. Some intestinal bug that laid me down and smacked me around for about 24 hours. I'm weak but better this morning.

Bill is packing and getting ready to leave early Sunday morning. It is sad, but as we've said for 20+ years, "The sooner you go, the sooner you can come back." I refuse to speculate on what life is going to be like over the next 4 months without his presence, strength and support. We'll just take it one day at a time, as we have been doing for the past 4 months, and have faith that it will all work out.

Thursday, December 13, 2007

Taking the day off...

Another gloomy rainy one. I think I'll sleep today and let the pond fill up.

Catch you tomorrow...

Wednesday, December 12, 2007

Busy Day, Scary Thoughts

I am running errands today. Fedex for sending boxes (Bill will load them in the car, the clerks will remove them from my car), and lunch with Melanie, and maybe even a short trip to the mall for some Christmas shopping time? I'll have to see what my energy level is after lunch.

Bill and Mom are on the mend, having made it to the "Hacking and Coughing Incessantly" stage. Bill will be leaving on Sunday to start his working life again, halfway around the globe.

I spent yesterday resting, and doing research on the Oncotype DX Breast Cancer Assay Test that Dr. DaSilva ordered. From there, I was able to link to reading monographs on chemotherapy drugs and side effects in medical journals. I am trying to get educated enough to eventually make a decision about my future treatment and also decide how I want to live the rest of my life with the "shadow" of breast cancer always in the background.

This is what we "bosom buddies" all think about, and rarely voice: "If it comes back..."

If it comes back, the options get more and more limited, your life becomes less your own and really all about the cancer, because now you know that this disease is what will kill you. From that point on, you go from treatment to treatment, trying everything, trying to eek out somewhat of a normal life, in between treatments. The drugs eventually stop working, you switch to other drugs, which also stop working. The only defense is to make the right decision at the point where I am, and hope for the best. And just how does one do that?

The temptation is to err on the side of overkill. Do everything, as aggressively as possible, even if it only means a 1 or 2 percent improvement in your statistical chances. The emotional side is that already, I want this to be over and done with! The objective truth is that no one can predict who will never have another problem (with or without further post-surgical treatment), and who will have a recurrence, despite the most aggressive chemo and/or hormonal regimen. The Oncotype DX test is very encouraging, because statistically, it appears to be able to predict just that--within a 5% margin of error, of course, because no one really knows. But it's all just numbers--they can't really tell YOU what is going to happen with YOU.

It occurs to me that every woman I know who is going through this or has gone through this, lives with this knowledge all the time. Friends who are on the far side (beyond 5 years, even 10 years) tell me that eventually, they forget about it, or at least don't think about it everyday. That's hard for me to imagine at this point, but I trust their experiences. What courage it must take to live like that, courage that I don't have right now. I'm just slogging through the process, doing what I'm told to do--getting stronger, keeping positive, trying to make the right choices, trying to live life normally without cancer suffusing EVERYTHING.

My niece, Bonnie said to me a few nights ago, "How come you're so brave, Auntie Pam?" I told her, "I don't feel brave at all. I'm just doing what I have to do because I really don't have any other choices." It's the truth. I'm just a passenger riding the bus to wherever it goes.

I suspect the hard part comes later, in the dead of night, when you have to live with the unthinkable thoughts trying to push their way into your head, and consciously make the effort to stuff them back down again, lest they turn your life into a constant worry over "what if it comes back?"

Tuesday, December 11, 2007

Encouraging News & a Better Mindset

Some days, I crank and vent. Yesterday was one of those days. Thanks to all who put up with it and realize that sometimes keeping a smiley face on ALL the time just doesn't cut it.

Today is better, not because of any remarkable improvement in my daily situation, but because once again, I am reminded of just how fortunate I am. My appointment with Dr. DaSilva went well. He is someone who will "partner" with me in my care, not just issue orders and expect me to follow them blindly. He is open to questions and concerns, and assures me that he enjoys patients who do their own research and participate actively in their own care. This relieves me.

He is also very encouraged by my particular cancer profile. He said that even if I walked away and never did another thing to treat this disease, I now have a 70-80% chance of non-recurrence. Naturally, we want to see if we can improve that percentage (it's all about the numbers, as I've discussed before), through what they call adjuvent treatment. Hormonal intervention (shutting down the estrogen & progesterone production in my body) can probably give me another 15% or more. And, as I suspected all along, chemotherapy is still in the future land of "maybe."

Dr. DaSilva has ordered a very new test--called Oncotype DX--which genetically maps 21 of my gene pairs and matches them to my specific disease profile. I am a candidate for this test because I am "early-stage, node-negative." The test is used as a "predictor" for estimating which types of chemotherapy would most likely increase my chances of survival, and which drugs would likely have little to no effect. He says that in the recent past, patients with my T1c/N0/Mx situation were all automatically treated with aggressive chemo as a precaution, but within the last 6 months or so, we have the ability to actually tailor the adjuvent therapies to the individual patient, using genetic mapping. I find this so amazing! I am truly grateful that if I had to have this awful disease, I had it now, when so many treatments and tests are just now becoming available (AND our insurance will pay for most of it too)!

He also assured me that I am doing just fine, but that I still need at least another 3 weeks to heal and become strong again. This is not an overnight process or a quick recovery of a week or two. It takes a full 8 weeks for my body to adjust and balance itself after such a major assault. So, crankiness aside, I need to just chill. I knew this, but it sure is nice to hear it from someone who knows what he's talking about. Plus, he looks a little like Antonio Banderas (without my glasses on), speaks 5 languages, and has a South American accent. Dreamy stuff for a middle-aged woman. Perhaps I can eventually practice my stumbling Spanish during our appointments?

So, today is a rest-and-recuperate day. Mom & Bill are still doing their cough-and-cold thing, I am still holding out for immunity. Chicken soup for everyone! Be assured we are all taking care of each other, and each day is a blessing not to be taken for granted. We are all working on getting better, a little bit at a time.

Monday, December 10, 2007

I don't know about this...

I keep expecting things to get dramatically better. It's not that kind of process, and I know this intellectually, but I wake up every morning thinking I'll be ALL BETTER today. Instead, it just gets weirder and in some ways, harder.


I'm supposed to be happy that the cancer is gone and I am reconstructed. On some level, I truly am, but I keep sabotaging myself by doing denial and anger all over again. Every time I look at myself, it's a case of rationalization. "Well," I think. "How about that. Scabs and scars and puckers, and wow, doesn't that look just plain ugly!" Then I sigh and think, "I guess it's better than dying of cancer." Swell.



The weather doesn't help. We need the rain, but it's been gloomy and gray for 3 or 4 days now. Bill & Mom are still sick. (I still am relatively asymptomatic, clutching my bottle of hand sanitizer and using Zicam 6 times a day and resisting all hugs). I'm also PMS-ey this week, and tears fall with no provocation at all. Emails about puppies make me cry. Walking in the woods makes me cry. Rubbing lotion on my chest makes me cry. So I mentally slap myself and get busy doing something else. This goes on, over and over, all day long. Weep, slap. Leak, slap. Bawl, slap. Oh, for heaven's sake!



Patience is what is required, and I'm just plain impatient. I'm tired of the long, drawn-out process. Let's get this over with! Enough already!



Grrrrrr. I want to be able to sleep on my stomach!!!! I want my life back!!!!

Sunday, December 9, 2007

It's Christmas--and everyone gets sick!

Well, it wouldn't be Christmas in our family without 6 boxes of Kleenex, throat lozenges, and Sudafed. Bill came home with a full-blown cold, complete with stuffies, drippies and cough. Mom started yesterday with the throat and sneezes before Bill arrived. I'm lagging behind with just one stuffy nostril and plenty of "stay away from me" fear. I can't tell you how many winter family gatherings have ended up this way. Sheesh. I got out the hand sanitizer and soup and herbal tea. So far, no takers. I've been using Zicam, and I'm the healthiest of the bunch.

I refuse to be a party to this particular party. Bill is probably the worst off--he must get better, and do it fast, as he has to fly halfway around the world on Thursday. Or, at least, that's the word so far. You never know in this business.

I cannot go to my oncologist appointment tomorrow if I am sick, and neither can my mom (she needs a blood test that they agreed to do, while I had my appointment). At this clinic, there are many other patients who are immune-compromised because they are currently undergoing chemotherapy, and I won't put them at risk, by showing up with an active infection.

Today will be a day of rest and recovery, for everyone! We'll hope for improvement tomorrow.

Saturday, December 8, 2007

Bill comes home today!

Sometimes, it seems as though I've spent my life in perpetual teen-hood, sitting by the phone, waiting for my boyfriend to call. Not an admirable way to spend a life, but there it is--I do wait for that call that says he's coming home.

We've had an interesting life, an unusual one. Most couples see each other daily, but briefly. We go long stretches without communication, and long months of constant togetherness. There were times (before email & cell phones) when we didn't hear from each other for as much as 17 weeks (when the U.S.S.R. broke up in the 1990s), when the only way to get word out was a letter hand-carried by someone headed back to the states, to be mailed upon arriving at an American airport. Now, at least, we talk or email almost daily.

People who have "normal" lives find this odd, and I have to say it was tough on all of us when the kids were little and Bill was gone. At times I felt that I was living two different lives, one where I was a devoted wife, and the other where I was a single parent. Over the years I raged about it, swore that it couldn't continue, that somehow it had to change. Then one day, I just embraced it, even started to enjoy it. Who else got to have all the benefits of marriage AND a life of one's own, simultaneously or sequentially? The very nature of our separations made it possible to reinvent our relationship on a constant rotating basis. We rarely got bored or restless with each other because we had to start over learning about each other, every time he came home.

In a way, we devised a "new-normal" for the parameters of our relationship with each other. This coming-and-going lifestyle became the norm and became familiar for us. It was still always sad when he left to go to work, and always happy when he returned, but it worked for us in some strange way. Maybe I'm more prepared for changes than I suspected, because of it.

So, home again for Bill, at least for a few more days before he has to go again. This makes me happy.

Friday, December 7, 2007

Pearl Harbor Day

Today is my beloved grandfather's birthday. Angelo thought the sun rose and set with me. That kind of adoring love was a gift that I took for granted, and I still feel him on my shoulder, talking me through the days, helping me along. When I lived in NY, I felt him most strongly when I was working in the garden, digging in the dirt or picking vegetables for dinner. Here in TN, he putters with me around the house, telling me about things that need to be "cleaned up!" (He was big on cleaning up). I know that what I'm hearing is his spirit and teachings that I internalized over the years, and it comforts me. Happy birthday, Papa.

Mom & I had a good day yesterday. We had coffee and conversation with MaryAnn downtown, ran a few errands, and decided to cook at home rather than go out for dinner.

Bill says that they are almost done with the boilers in New Orleans, and they will probably cut him loose today. He will fly home tonight or tomorrow morning if all goes well today. This short week of work will probably make the difference towards getting a full retirement year's credit, in spite of him only working 4 months this year. One less thing to worry about.

Bill had started massaging my upper back and under my arms before he left, and Mom has continued the practice this week. The lotion and the firm touch seem to have diminished the skin-burning sensations and general pain I have felt since the surgery. I don't know if it is the increased circulation, or maybe even just a desensitizing of the skin, but whatever it is, it's helping.

Mom and I were talking about time and perspective this morning. How I yearn to be on the "other side" of this experience, looking forward to the time when I can look back on all of this with some wisdom and insight. Living with it daily takes every bit of energy I have right now, and I feel about as wise & insightful as a potato. Bumpy. Life is bumpy for me, with many ups and downs on a daily basis.

MaryAnn brought us roses, and Bill sent spicy-scented carnations for our anniversary (thus extricating himself from the doghouse with one grand gesture). I feel florally celebrated and very blessed.

Thursday, December 6, 2007

Settling in

Mom and I are re-establishing our patterns and routines. We had a pretty big day yesterday--laundromat, dump, Walmart and we even bought a Christmas tree. We came home and both slept for most of the afternoon, got up and had dinner, then went back to bed again! We do pretty well together.

Echo has cooperated by becoming the "self-walking dog" in the morning, and doesn't tug on the leash when we go out back for potty-breaks during the day. Thank you! I love a good dog!

Bill is working, earning money, and even got all of his pre-certification for the OBIS trip taken care of in New Orleans yesterday. He sounds tired, but happy to be back at work.

My steri-strips started peeling off my incisions after this morning's shower. They were due to come off tomorrow, so I just went ahead and took them off. I'm not sure what to say about that. It looks pretty gruesome to me, again in an objective sense, but I guess it will have to do.

This is what I am now, and I'd better start getting used to it. I put some lotion on my skin and went on to the next thing. I'll look at it again tomorrow, [Scarlett], and maybe it won't seem so weird someday.

This morning, we are meeting a friend for coffee and doing some last-minute Christmas shopping. Tonight, we'll go out to dinner and celebrate our 25th anniversary, in absentia. What a long, strange trip it's been--and continues to be. This is not what I expected. This is not what I wanted. But this is where I am, so I'll just make the best of it.

Wednesday, December 5, 2007

Hello Happiness...

Bill left Monday and now Mom is here and I'm taking literary license with Everly Bros. lyrics. I sense a theme, one that dates me irrevocably. Hmmm. Now I bet you have that song in your head too.

I find it astonishing that my mom catches planes with such aplomb, despite being a few months shy of 81. She says that 80 is the new 60, but her resilience is amazing. When I fly, I'm wiped out for 3 days or more. She hits the ground running and never stops.

And she makes friends wherever she goes. Sure enough, she got off the plane with the phone number of a Kingsport woman who is a 6-year survivor and wants to talk to me about post-surgical treatment options. The circle keeps widening.

We stayed up until after midnight (she was still on West Coast time) debriefing and catching up.
One thing about family--you pick up right where you leave off, as if no intervening time has passed. We spent last July together at her house, and now we will spend December together at mine. Echo remembered her immediately, and we all settled into the groove.

I felt it was important for Bill & me to be by ourselves for these past 3 months of waiting and worrying, surgeries and first-step recovery. But it sure is nice to have my mama with me again, now that the big tough stuff is over and I can enjoy her company.

Tuesday, December 4, 2007

Bye, Bye Love...

You thought I was kidding when I said that Bill needed to have a bag packed and be ready to go on a moment's notice, right? Well, he's gone, off to New Orleans for a week of dock trials on the USNS Bellatrix.

I wouldn't be so annoyed if he hadn't been so completely delighted and excited to leave town. My restless puppy. Can't keep 'em down on the farm.

To be fair, he's been doing the beck-and-call routine non-stop for 3 months, without complaint.

To be selfish, once again I am spending my wedding anniversary with Lean Cuisine, the dog, and a movie. Sigh.

Monday, December 3, 2007

Another busy Monday...

Once again, into the fray.

Bill needs to arrange a drug screening test ASAP (being a transportation industry worker, drug testing is a regular part of his life), so his certification does not expire. We have Christmas boxes to send out across the nation, and the sooner on that, the better. The Satellite Guy is coming for another try at installing the high-speed internet. The dog has been bathed, and there's dog hair all over the house that needs vacuuming. Busy, busy. As an unwanted bonus, Bill woke up with a sore throat, and thinks he's getting sick.

On the plus side, he accomplished his first major tree-felling with a chain saw yesterday. Timberrrrrr! The old 100-foot dead oak ain't what she used to be. No longer threatening the car where its parked or the house. It was impressive to watch.

I'm doing just fine. Getting a tiny bit stronger everyday. Down to one nap per day and not much to complain about. Doing strength and flex exercises everyday, and starting to see tangible results. Still changing bras on the hour, and pacing myself on activities. Do something, rest. Do another thing, rest. Do nothing, rest. Boring, but necessary. Same old thing, day after day. Getting a little grumpy about it, thank you.

Mom comes tomorrow, and then the fun can begin again!

Sunday, December 2, 2007

Venison!

Our friend Keith brought us venison yesterday, just when I was wondering what to cook for dinner! He brought us so much, Bill had to plug in the extra freezer. What a wonderful gift! Now Bill says he's lost his motivation to continue hunting, but since he's probably leaving soon, that activity was going to end soon anyway.

I never thought about venison, one way or another, until we lived in New York. For many people there, venison is the meat of choice, the taste of childhood, a reminder of lean times or sometimes just the tradition of autumn. Though Bill never shot a deer there, friends always shared packets of venison--wives of hunters gave it away when they were tired of eating it or when they needed freezer space.

At first, I was nervous. I had always heard that game meats were, well, gamy and strong tasting. I scoured specialty cookbooks, which suggested strong-flavored sauces, juniper berries and gin, vinegar and wine, medicinal-smelling aromatics. What a surprise when venison turned out to be like a fine aged steak, tender and flavorful, lean and delicious!

When our final project in culinary school was due, I elected to use farmed venison for one of my meal centerpieces and devised a recipe using homemade blackberry vinegar and blackberry jam as a base for a pan sauce. It was a hit with our diners (I remember my mom and dad came to that meal at the college, my final exam for the program--my dad chose the venison, to my surprise). My brother raved about it too, once when he came to visit and I served him what I call "The Other Dark Meat," using frozen blackberries and raspberries that time.

So now we have venison in Tennessee too. Last night, I cooked it like this, with just things I had on hand in the pantry:

Heat a large skillet and spray with non-stick coating. Lightly sear 1/2" thick pieces of venison for only 1-2 minutes per side, while pressing 1 or 2 garlic cloves into the skillet. Remove to a plate while making the sauce. Deglaze the skillet with a little red wine, sprinkle in a packet of onion soup mix (I had no beef broth or brown gravy powder, so I used this instead), add about 1/2 cup water, 1 Tablespoon of whole-grain mustard and 1/4 cup of blackberry jam. Bring to a gentle boil and reduce slightly to a sauce consistency. Taste for seasoning, adding salt & pepper. If the sweet-tart balance isn't right, adjust using sugar or acid (lemon juice or cider vinegar). When sauce is right, add back in the venison pieces and accumulated juices and turn in sauce to coat. Serve with roasted potatoes and vegetables.

It was delicious, better than I remembered.

Saturday, December 1, 2007

Dr. Mark on TV Tomorrow!

Our good friend Dr. Mark Goldberg in Charlottesville will be interviewed on the Discovery Health Channel tomorrow morning on a program called "Cardiometabolic Risks." It airs at 9 am here in the east. So not only is he enshrined in our hearts for delivering Alex 21 years ago, finding a great medical team for my neurosurgery in 2001 and my cancer in 2007, putting us up as perpetual house guests this fall, but now he's a TV star too. Sheesh. Some people are just such Renaissance Men!

Alarm! Alarm! Bill's Going Back to Work!

We knew it was coming, but THE CALL is always a shock. Time for Bill to pack a sea bag, rush around in a panic, get on a plane and go back to work.

Well, almost. There are still things that have to be done. A new drug test (the old drug card expires Dec. 13) will be necessary. Forms to fill out and email for pre-boarding. And just to make things interesting, another call came in yesterday, asking if Bill could get on a plane tomorrow and do 5 days of dock trials in New Orleans this coming week. The catch? It's a government contract and there is no funding for it, as of 4 pm Friday afternoon. So we're skeptical that the job will actually materialize, and we're assuming that it won't happen.

It is always like this in the shipping business. There is no planning ahead for any job. When you tell them that you're ready to go back to work, you'd better have your bags packed, because they don't want to talk about later in the week or next month. It's always a panic, get on a plane and catch the boat tomorrow. You'd think I'd be used to it by now, but I'm not.

The plan we had last summer was that Bill would be home for September and October, take a temp job in November and go back on the USNS Observation Island in late December. That of course didn't happen, and Bill is still short by about 3 weeks to get vested for a full retirement year. We decided that we weren't going to worry about that, but now there's a slight possibility that he might get that retirement credit after all. Of course, there's no telling if the OBIS job will actually happen before the end of the year. It's all up in the air, the maritime version of zen-patience, and letting things unfold in the fullness of time. He'll go when they say "go," and he'll know about 24 hours ahead.

So we continue to just live our daily lives, with this spectre in the near distance. When he does sign on to the OBIS, he'll be gone about 4 months, which would put him back home in April. Wow. That sounds like a long way off. I'll have to find someway to work this out, one way or another. Usually I'm ready for him to go, just about the time he goes. After all of this togetherness and tough stuff we've slogged through together for the last 3 months, I'm not ready to give him up at all.

Mom will be here to help me along through the next stages, at least for December. I'll just have to wait and see how it goes. There's no point in worrying about it, I've already been so lucky to have Bill's undivided attention and constant care, one of the advantages of the business he's in.

But now the piper must be paid, the insurance REALLY needs to be continued, and he has to go earn some money for us to live on. We'll figure it out somehow.

Friday, November 30, 2007

Clothes Problems and the Land of Chafe

I am having trouble with clothes.

You'd think after having so much taken off the front of the chassis, my body would be a different size and weight. Instead, those stats are the same, but packaged in a completely different shape. I used to be an upside-down triangle (widest at the top, point at my feet), now I'm right-side up (apex at my head, base at my hips). I've discovered that all these years, I had a big fat stomach lurking underneath that big shelf on the top. Who knew? I never saw it, and Bill assures me that no one else did either. Now it sticks out beyond the small foothills of my new chest, like a massive mountain in the distance. Sheesh.

Bras continue to be a pain and a challenge. Ace bandages ride up or fall down and always wind up pinching. I buy and try about 4 different bras per day, take them back the next day and start over again. They all rub and chafe and bind. Sleep bras, sport bras, soft cup, no cup--I have yet to find something that doesn't burn or constrict after about an hour. So I change them, over and over, all day long.

Just when I thought I was going to burst into flames yesterday from the fire underneath my latest trial undergarment, relief arrived via UPS--Kellie sent me some lotion with melaleuca oil in it, and I almost wept with gratitude. Ahhhhhhh. Deliverance from the Land of Chafe at last!

I notice every woman's bustline for the first time in my life. I look at clothes in a catalog, outfits on women in stores, costumes in the movies. I gauge them all with a critical eye of "could I wear that now?" or "nope, that probably won't work on the new bod." I have no accurate mental template of my real body image anymore--my head still thinks it's the old shape and form, and it doesn't match reality in the mirror at all. It's a bit like being a teenager all over again, trying to find out what looks good and what doesn't on my particular body type. After years of finally figuring out what I can wear that will make me look sexy, or thinner or businesslike or just plain decent, I don't know what works anymore. My old shirts and pants fit, but they don't hang right--the eye is drawn to the middle of me, and I just look WIDE in the middle. I no longer have the luxury of hiding my abdomen of any size in the shadowlands underneath the overhang of my bustline. My hips no longer look small by comparison. I've been excavated and engineered, and it's mighty weird, like visiting a familar corner that's been bulldozed for a new strip mall. I don't know my way around this new landscape yet.

I thought I was going to be able to wear things that I never have been able to get away with in the past because of my over-large "bowsprit." Instead, I'm confused and style-challenged. I won't be able to do deep necklines because of the puckering and scarring in my cleavage, so that's out. I'm going to have to figure out how to minimize my big stomach and hips instead of my bust. Clingy shirts look great with these new perky, above-elbow breasts, but clingy means I'm going to have to learn to suck in my gut. Or get a girdle, for crying out loud. Do they even make those anymore? Maybe I'm going to end up being a naked hermit up on my mountaintop, simply because I can't figure out what to wear to town?

So, it's a challenge. A new project, even. When I get my energy back, I'll go shopping in earnest and figure out the parameters of this new body and how it fits into the universe of clothes. I wonder if a whole new wardrobe is a justifiable medical expense?

Thursday, November 29, 2007

Slowly & quietly, getting better each day

I still have zero stamina, but I am beginning to feel improvement in strength and flexibility each day. I still take 2 or 3 naps (morning, afternoon and sometimes early evening) and conk out by 9 pm, but I can now pick small things up off the floor, cook dinner and bathe myself without supervision. I can carry my own handbag and shuffle through Walmart. I can open jars and a bottle of wine with tools and a little advance planning. I can stand on tip-toe and bounce up to turn on the stove hood light. I can walk down to the road and back up the steep driveway without having to stop for breath or leg cramps. I do not need drugs to get through the day. I can brush my teeth and hair, mostly without pain.

Long-term goals for the future: Being able to really s-t-r-e-t-c-h my back, with arms overhead! Walk the dog on a leash! 30 minutes on the elliptical, without feeling faint!

Short-term goals for today: 5 minutes on the elliptical trainer! Programming the new phone system (yes, finally an answering machine)! Talk to the insurance company! Go to the post office and pick up the mail! Keep the dog calm while Bill gives her a bath!

Small steps for tiny feet....

Wednesday, November 28, 2007

Send in the gawkers!

After a long but happy day yesterday, we finally got home around 7:30 pm. Echo was so exhausted, she went up and flopped on the futon, refusing to move or even open her sleepy dog-eyes. And me? The stitches are out. Ah! I felt like Pinocchio being released from my strings! And no more long drives to and from Charlottesville for 5 weeks. Ah!

Plastics lived up to their reputation, pulling out all the stops and keeping us entertained. Hanna Richter, a resident who was present at my initial diagnosis back in September in Dr. Brenin's clinic, is now doing a rotation with Dr. Lin's clinic, so she and I have travelled this together--she was one of the diagnostic team that found the other cancer in my right breast, and she was part of the surgical team at my reconstruction surgery (I saw her in the OR, just before I fell asleep). Hanna did most of the work yesterday and we had an opportunity to chat. She is doing surgical rotations at UVA, but is actually a student from the University of Freiburg, Germany. You'd never know, as she speaks English perfectly, with only a trace of an accent that could easily be attributed to Minnesota or Wisconsin.

As usual, I spent the day with my shirt off in front of strangers. Normally quite a modest person about nudity, I have to say I'm getting used to it. And the strangers kept coming in--a woman I'd never seen knocked at the door and said "Ooooh, I want to see too!" from behind the curtain. When I asked, "And just who are you?" she laughed and said, "just a nurse, but Dr. Lin said I had to come and see, he's so proud of the work he did on you." So now I've become a testimonial, I guess.

Bill made the observation that the enthusiastic optimism exhibited by the Plastics people is most likely for my benefit--they may not be as crazy as I make out. I think he may be right. The obsessive cheerful positivity of all of them is a powerful reinforcement for women who have been through such a major loss. To have a room full of people smiling and congratulating and asserting how great you look can't help be a motivator to start thinking of your new body as something to be proud of, something that looks good.

After admiring my healing properties, my symmetry, my reduced bruising and my general all-around awesomeness, they asked if there was anything else they could do for me. I was a little embarrassed, but I mumbled my problem. "Lint," I said. The sticky post-surgical adhesive was still stuck to my chest, and I had started collecting little bits of fuzz, thread and yes, even dog hair. My new cleavage looked like a dryer lint trap, and I couldn't scrub it to get it off (hurts), or use any kind of solvent to remove it (skin too close to stitches). Could they help?

Enter Hanna and a bottle of strange-smelling oil, the color of pink grapefruit juice. She managed to get most of the fuzzies off and the glue that kept it there. She also taped my incisions with steri-strips, so now I look like a Barbie who just came home from the first-aid station. Dr. Lin wants me wearing a bra, but when I complained that I'm still too chafed to wear one for more than an hour or so, he suggested big, wide ace bandages instead, so Hanna and a nurse made me a "tube top." Wow. For the first time in my life, I can wear a tube top!

Jean asks where Bill has been through all of this--was there an initial "unveiling" of the new me, when the bandages came off, and how did he react? Bill has been right next to me through every single step of this, from the initial exams to the last kiss before the anesthesia kicked in, to the icky first let's-help-you-get-dressed-to-go-home moment, to the crowd-pleasing clinic viewings of yesterday. There was never actually a formal ~ta-da~ of bandages coming off, more like a here's-your-wife-take-care-of-her. He's washed my hair and cut my toenails, sponge-bathed me and dressed me, lifted me up and off the couch, emptied my surgical drains and hauled me out of the tub. He's seen and done a lot of gross stuff in the last few months, and still manages to tell me everyday that I am beautiful. He says that in his dreams now, I appear in the new body form, not the old, supposing that this means his subconscious has accepted it. I'm not there yet, but I'm getting there with his help. I am awed by his devotion and care.

Today, we are busy. The satellite people are coming to install high-speed Internet, my present to us for our anniversary. My hated dial-up service is scheduled to quadruple in price on Dec. 8, and why should I pay that for something we hate? With the satellite, we also won't need the extra dedicated phone line, so I can justify saving some of the cost that way. We need to go to the post office and Walmart, where a new phone system also awaits our pick-up. We will be learning new things over the next few days, cleaning house and getting ready for my mom's arrival on Dec. 4. Almost like a normal life. I've told Bill that as of today, he is a free-agent, a man who can go back to work as the spirit or opportunity moves him. He doesn't think I'm ready yet, but I am getting stronger daily and will be able to cut him loose if he needs to go.

Tuesday, November 27, 2007

One More Step, Then Another, and Another...

I feel like a bad line in a war movie, you know, the one that goes something like "Come on you grunts, whatsa matter, you wanna live forever?" just before they go charging into a hopeless fight and certain doom. Well, yeah...I DO want that, thank you. I want to pack up my bags, tell everyone that it's been a slice, and go back to living the life I had before Sept. 7. Unfortunately, I don't get that option. Everything comes back to the fact that it will never be the same, that I don't get to have a "do over," and life starts up again, but from this point here on. No turning back, only re-inventing the future everyday from here on out.

The finality of the surgery is what got to me yesterday. Hearing my surgeon pronounce me "an excellent cosmetic result," made me wonder "And what planet are you on, doc?" Reading the long-awaited pathology report, my cancer distilled into two typed pages of techno-medico-speak. I've heard people talk about out-of-body experiences, but reading about former pieces of my body described as "fresh" tissue samples just made me a little queasy and sad. It's not me, (but it used to be), and the new me looks good for what it is, but it's still not me. I cringe.

Today, more poking and prodding, this time with the wacko plastics crew. I've decided that these people are the court jesters of the medical profession. (Bill says that he thinks that they just REALLY enjoy their work). To be fair, they get the unique position of making everything better. OK, it's not the same, but certainly what they do makes the most of what's left after the deadly serious oncology people get through with you. They do have more fun in this peculiar parallel "Universe of Cancer" that overlays what used to be normal life.

I've been living in this parallel universe for about 3 months now, and while it's been interesting, I'm homesick for the old world I knew. I keep looking for a worm-hole to take me back, but as all sci-fi fans know, the things that happen in the alternate world impact and influence events in the normal timeline. There is no going back, only the future you choose in the world you are forced to inhabit.

So, switch modes, back to positives, stop whining and push on. Stitches come out today! No more poking me and pulling and itching and scratching! I see a future that includes soothing lotions and chafe-resistant powders. They tell me it is good that I have so much skin sensitivity left after the surgery (as opposed to being completely numb), but the downside is that my skin feels like a constant rug-burn, like someone buffed me with 220-grit sandpaper. After the stitches go away, I can finally treat that and get some relief. My arm function and strength continue to improve and the collarbone aches and upper chest muscles are calming down too. All good.

The path report, other than being a little creepy to read, was right where I suspected it would be all along. I am thankfully a Stage Ic, on the right side of the cusp of Stages I-II. I have an appointment with an oncologist in Kingsport on Dec.10 to discuss what comes next. My histology was medium grade, medium mitosis, medium differentiation. My lymph nodes were all negative. My metastasis is X--unable to be determined. So for those of you who follow these things, I am a T1c, N0, MX. All pretty good news.

Dr. Brenin says that I am therefore a candidate for a new type of diagnostic post-surgical test called Oncotype DX. This is a test that looks at 21 different "snips" of genes (SNPs, which stand for single nucleotide polymorphisms) and is used as a more individual predictor of the chance of recurrence; also what types of chemo drugs are likely to be most effective and which ones are likely to not increase statistical chances of survival. This might be a way to better tailor a chemo regimen and assess risks versus benefits of specific chemo protocols.

Some side effects of chemo are well known and well publicized--the nausea and hair loss, for example. But the ones that scare me are the ones you don't hear about until you are forced to choose chemo or not chemo--things like neuropathy (which I already have a significant amount of from the spinal stenosis) and heart muscle damage. So much of medical treatments available now come down to a "quality of life" issue. Just how much are you willing to put up with to increase your chances of beating the cancer for good? Would I risk heart damage for a 2% increase in my chances? Probably not. For 15%? Maybe. Would I take a possible 25% chance of heart damage to gain a possible 54% decreased chance of recurrence? I have no idea right now, though I suspect these are the kind of choices I am going to have to make and live with (or not). This stuff (especially for someone who is not entirely comfortable with numbers anyway) is the real challenge of cancer.

In the beginning of this process, when I was still crying everyday, several times a day, I think I summed it up for Bill this way: "OK, so let me get this straight--they're going to surgically mutilate me, then they're going to poison me, then they're going to shut me down hormonally and then they're going to target my genes and zap those with manufactured antibodies, have I got that right????" It's truly unbelievable, isn't it? Kind of like trying to kill Rasputin--first they tried to poison him, then they shot him a bunch of times, then they tied him up and threw him in the Neva River, where he finally actually died of drowning. And yes, I feel like that some days.

But for whatever else it is, this is my life, and I still get to choose how to live it. I'm not being graceful about it, but I am trying to be grateful. It's not over, but some of the worst of it is over. It's not perfect, but it's what I've got, and I'm going to make the most of it.

Monday, November 26, 2007

Rainy day, headed to Virginia

Oh, how we need this rain! I like waking up to the sound of it on the skylights.

Our plan is to leave here by 8 and go directly to the hospital, see Dr. Brenin for my post-surgical check, get a copy of the pathology report, and take the Goldbergs out to dinner. Tomorrow morning, Dr. Lin will remove my stitches, and hopefully send me on my way with an appointment sometime in the future to form and tattoo "nipples" on my new falsies. How incredibly w-e-i-r-d. I, who never wanted a tattoo, now get two. Again, the perverse humor part of me flirts with the idea of something out of the norm--maybe a lion & and lamb? A Yin & Yang? A butterfly on one and a screaming eagle on the other? Hidden messages? How about I just calm down and let them do their jobs normally...

This will be a quick trip--up there today, home tomorrow afternoon. Throw a change of clothes in a bag, pack up the dog's stuff, make some sandwiches, grab a couple of books and the loaves of bread and go.

The Challahs turned out beautifully. I had forgotten what a great recipe that is, and the dough was rich and soft enough for me to roll it out and braid it myself. So I am getting stronger incrementally, even if I am frustrated at the speed of the improvement! I don't think I've made Challah since we lived in Vallejo, almost 20 years ago. I used to make it for Mark & Jo Goldberg because Mark was always the physician on-call (he was doing his family practice residency then) on holidays and weekends, the only time my babies got sick, it seemed. It was an easy thank you gift for all the excellent, cheerful, after-hours care he provided, and in my mind, it became part of the transition between our doctor-patient relationship and a family friendship that has brought us to this point today. And now, Dr. Brenin and his family will get a loaf too, part of the circle expanding again. Food making friends--I love that!

So off to chores and then on the road.

Sunday, November 25, 2007

Challah & English Muffins

Amaze your family & friends! I have to do all of this kneading stuff by machine, (Bill has to do the hands-on part), but look forward to when I can do this again myself. I decided I'm taking Dr. Brenin and Drs. Goldbergs some Challah for a thank you gift tomorrow, and the English Muffins recipe is just for fun--my son thought I was amazing the day I tried these for the first time as a snack for his friends.

English Muffins

1 cup milk
2 Tbls. honey (trick--spray measuring spoon with PAM or pour oil into measuring spoon, then pour back into bottle--then measure the honey, it will slide right out)
3 Tbls. Butter, cut into 3 pieces

Heat all in saucepan until butter begins to melt. Turn off heat, whisk. Leave to cool to less than 110 degrees.

In large bowl mix :

1 cup warm water (110 degrees)
1 pkg active dry yeast (2 tsps.)

When milk mixture has cooled, add to water and yeast, then add 3 cups flour. Beat 100 strokes with a wooden spoon.

Add more flour, 1/2 cup at a time, and beat until a dough forms and is not sticky anymore. Turn out onto floured surface, flour hands and knead dough for 3-5 minutes, until dough is smooth and elastic. Let rest 5 minutes.

Cover two cookie sheets with waxed paper and sprinkle with cornmeal (or cornbread mix). Set aside.

Roll out dough (with a can or bottle, if you don't have a rolling pin) to 1/2" thickness. Cut out with a 3 1/2" cutter (empty pineapple can works great here) and place on cookie sheet. Re-roll scraps until all dough is cut out--you should get about 18 out of this batch. Turn rounds over several times on cookie sheets to cover with cornmeal. Cover with a clean dishtowel and let rise in a warm place for 35-45 minutes.

Heat ungreased griddle or skillet over MEDIUM heat. Place muffins on surface and gently cook 5-10 minutes per side until browned. Remove and cool.

To serve, split muffins with a fork and toast. Can be kept in plastic bag for 3-4 days.

Challah

Combine:
1 Tbls. yeast
1 tsp. sugar
1/4 cup warm (105-115) water
Let proof for 5 minutes

Combine in large bowl:
6 cups all-purpose flour
1 Tbls. salt
Make a deep well in the flour mixture and pour in the proofed yeast mixture.

Add:
2 cups 105 degree water
3 slightly beaten large eggs
1/4 cup oil
3 Tbls. sugar
1/8 tsp. saffron

Beat well until a ball of dough forms, then turn out onto a floured board and knead about 10 minutes until smooth and elastic. Place in a greased bowl, turn, cover and let rise until doubled, about 1 hour. Punch down and divide dough into two sections, kneading each for several minutes. Cut each section of dough into 3 parts and roll into long tapered cylinders. Braid 3 ropes loosely, starting in the middle and braiding out to each end--tuck ends in. Lay each braid on a greased and floured baking sheet. Cover and let rise until almost doubled.

Brush tops with egg wash (1 egg beaten with 2 Tbls. milk) and sprinkle with poppy seeds if desired. Bake at 400 for 15 minutes, then reduce heat to 375 and bake about 45 minutes longer.

Saturday, November 24, 2007

Chomping at the bit, howling at the moon...

I admit it. I'm getting bored with this. The recognition that I can do almost nothing with speed, strength or coordination is beginning to irritate me. It takes seemingly forever to do the simplest of self-care chores--brushing teeth, combing hair, dressing or undressing, taking a shower. I can't do anything that requires torque with my hands or arms, such as opening a tab on a soda can, unscrewing a jar lid, or pulling out a dresser drawer. Cutting a piece of meat and getting it to my mouth (instead of in my lap) is a 50-50 proposition.

All those body moves I took for granted. Sigh. It's like a big game of hokey-pokey, where I find out that the boob-bone (who knew there was one? I can only assume that it was removed and that loss is the source of my problem!) is indeed connected to the collar bone is connected to the arm bone is connected to the jar-opening bone, and that's what it's all about!

On a positive note, I am doing my flexibility exercises and have distant hopes that the cumulative effect will manifest someday in a return to normal. Or what we now call the New-Normal. I have learned how to sleep on my back and rarely, even sitting up in the car. But those hardly seem like a fair trade of skills when staring at the refrigerator door and wondering how I'm going to pull open the darn thing.

I am not a patient person. I've gotten more patient over the years, but it's a thin veneer overlaying the basic go-getter personality. It's been 3 weeks since my surgery, and I think I should be able to open a can of 7-Up, for crying out loud! Grrrrrrr.......

Friday, November 23, 2007

Another reason Thanksgiving is my favorite!

We were driving home yesterday from our restaurant dinner, and recalled for the first time in years that Thanksgiving is actually our "First Date" Anniversary.

Twenty-seven years ago, I invited a young enlisted Marine, far away from his own family, to my home for Thanksgiving dinner. He had been pestering me by phone for about 3 weeks to go out with him, and I was in a strict "no dating" phase of my life. I figured that meeting my family, up close and personal, was a good way to make him back off, while I still got to feel virtuous about providing hospitality to someone who had nowhere to go but the "chow hall" for Thanksgiving dinner.

I remember that in the afternoon, while the turkey was in the oven and I was furiously cleaning house, he called and said that he couldn't get a ride--I needed to come pick him up at the El Toro Marine Corps base. "Great," I thought, "just what I don't have time for!" Since I hadn't been in the shower yet, I tied a bandanna around my dirty hair, hopped in my van and drove out to the base to get my guest. I remember being annoyed, but also a bit pleased--surely seeing me at my most unattractive would discourage him, right?

When we got back to the house in Costa Mesa, the turkey needed to be turned. This was the year when roasting turkeys upside down was all the rage, and I was determined to try it. The big bird was in one of those blue-black oval roasting pans with the white speckles, and Bill and I argued (a portent of the rest of our lives?) about the best way to turn the turkey over without getting burned. Bill made the suggestion that perhaps putting the cover on top and simply flipping the pan over would do the trick. Neither of us counted on all the hot liquid leaking out of the unsealed gap between the two halves of the pan, scalding grease and turkey juice went all over us and the carpeted floor (another lesson: never have carpet in a kitchen), and we had our quintessential Annie Hall scene.

Things got better from then on. Bill cleaned the kitchen, I went and took a shower, and my parents and grandparents arrived. Another serviceman, a friend of my brother's who was stationed at Norton AFB (so Bill wouldn't read anything into my inviting just him), and my roommate Jennifer rounded out the table.

The dynamic was amazing. My parents liked him. My grandparents liked him. I even liked him. Bill acted like he was part of the family with complete ease. Mom, Dad, and Jennifer all played the piano after dinner for entertainment and everyone had a great time. When the other guests left, Bill and I stayed up and sat in lawn chairs in front of the fireplace, swigging champagne from a bottle and talking long into the night. At about 3 in the morning, I handed him a pillow and a blanket, showed him the couch, and tottered off to bed by myself.

The next time he called and invited me to go out with him, I said yes. (Well, I had to--he had 2 unobtainable theatre tickets to Evita in LA)!

My mother remembers that going home that night, she told my dad "That's the one!" It took us many more months and several separations to figure it out, but my mom knew right then. From such a ignominious beginning, my world turned and changed.

Thursday, November 22, 2007

Let us give thanks...for INSURANCE!

I think one of the first things I said when they told me I had cancer on September 14 was, "OMG, this is going to cost a (bleep!) fortune!" Usually, I love being right. Not so much, this time. The first of the bills have started trickling in, and the figures are downright breathtaking.

"Just tell me a number," Bill said stoically. OK, sweetie: For the initial testing in Knoxville, the pre-op diagnostic tests at UVA, and the one mastectomy surgery (not including the first Sentinel Node Biopsy surgery or the last Implant Reconstruction surgery, and not including any actual physician fees) we're at $61,650.78 as of yesterday. This also doesn't include travel costs, meals, new bras, gauze, prescription drugs at the pharmacy, any chemo, hormonal, or gene-targeted therapies needed after surgery (or perhaps psychological counseling needed after viewing the bills).

Whew. I feel like I need smelling salts or a smack upside the head. If I could drink, I'd open a bottle right now for breakfast.

It's a ridiculous number of course, one that is hard to comprehend, and therefore is rendered meaningless in the world of reality. It might as well be $600,000 or $6 million. It's just a gazillion smackeroos in our frame of reference. Oh well.

There will be insurance picking up the lion's share, there will presumably be "adjustments" made by the hospital based on contractual rates, something that I know happens but don't fully understand. The original numbers never actually get paid, but I don't know where that magical adjustment money goes--it seems to just disappear into the void.

For example, my Knoxville tests were originally $1665 and $239. My insurance paid $257.78 and $97, respectively. I paid $26.84 and $10.78, respectively. The other $1511.60 went into the land of "money we wish we had, so we billed it, but no one will pay it, so we'll forget about it."

I've had this explained to me, by knowledgeable people who work in the medical insurance business, but I still don't get it. Where does that accounting entry go? How do you bill a mythical number that everyone knows you're not going to get, in order to arrive at a number that everyone agrees is the real price? It's like negotiating to buy a car, where the guy has to go talk to his manager before a deal can be struck, and no one knows how much it's going to cost until you sign the papers and the car is yours at whatever it says on the paperwork.

It's a crazy-maker, that's the truth.

So, we shrug our shoulders and write the seemingly minuscule co-payment checks. Maybe it's to get us to the table and breathe a sigh of relief that we're paying anything less than that stunning initial number? Is it meant to help me feel like I just got a bargain on saving my life?

I'm not really worried about this, but I'm fascinated by the absurdity of it. When I was first diagnosed, I pulled a chunk of my Roth IRA money out (allowed for medical expenditures) in anticipation of this very situation. The beauty of the IRA rules is to encourage people to save for retirement while maintaining a "rainy-day" fund if it's needed before retirement. This is my rainy day and thankfully we have it available to spend. Who needs a sacrosanct retirement fund if foregoing cancer treatment would kill you before you ever got to collect it, right?

So, I'm indeed thankful this morning--for my good medical care so far, for a cooperative and helpful insurance company, for money in the bank that will soon be in the coffers of the medical establishment, and yes, even for the Internal Revenue Service for their rules on withdrawing money for medical expenses.

But I still want to know where that adjustment money goes....


Happy Thanksgiving to all. This is my very favorite holiday, mostly because of my mother's and Aunt Kay's cooking and that fact that it was my father's favorite too. Anytime you can gather family & friends, ponder freedom & history, and then add the celebratory ingesting of massive amounts of food, you've got a winning party in my book. Bill and I are doing it this year as "just the two of us." We're going to Morristown to eat with all the seniors at the Ryan's Buffet, an upscale strap-on-the-feedbag kind of place. No cooking or dishes for me this year, which is a little sad, but oh-so-convenient. It is what works for us this year. Next year, we'll start some new tradition and think back to this time, hopefully with no regrets or sadness, being thankful that we got through this time with cheer.

Wednesday, November 21, 2007

How do you feel?

I remember this from Surgery, 2001. Your whole life becomes about you. The entirety of your interactions with others revolves around your "current condition," as if your health were an hourly weather forecast. You become "The Neck" (in 2001), or "The Cancer" (current incarnation). People can't help it, they are being nice when they say "How are you?" even when you're a stranger. Friends are concerned, the family is worried. The convention is to assure everyone "I'm fine, I'm good, I'm better," which are all true statements. The temptation though, is to fine-tune a fantasy response in my head that would only be categorized as what my kids call TMI--too much information.

The TMI response is completely inappropriate in almost every situation, but because I have a perverse sense of humor, it's a mental game that amuses me. Succumbing to actual voicing of this response would be cruel in most cases, but I had an opportunity to do so yesterday in a context which appeared, at first blush, to be appropriate. So for those of you who are also easily and perversely amused, I will share:

I felt well enough to drive to the health food store yesterday, and just bad enough to make the drive a necessary outing. My goal was to score a probiotic supplement to help repopulate my intestinal flora & fauna after the ravages of antibiotics. By the time I got to the bottom of the driveway (one-quarter mile), I was wondering if I could make it to the west end of town and back without moving my arms while turning the steering wheel. Nope. Probably not. So let's do this gently, shall we?

I made it safely to the store and managed to put on the parking brake (well, just one click, but it's on, OK?), got my active-cultures-in-a-bottle, and was chatted up by the Australian woman who owns the store. "What kind of surgery did you have?" she asked kindly. When I told her "mastectomy," she leaned in and said, oddly, "My best friend just had a hysterectomy, and she said it felt like she had been [sotto voce] gutted like a fish! -- what do you feel like?" she asked eagerly.

Here was an opportunity to tell the whole truth, to formulate in my own mind an accurate description of what this REALLY feels like, to a person who had the misfortune or ineptitude of asking a specific question that I could answer with personal experience and authority!

"It feels like I was whacked repeatedly across the chest with a red-hot iron train rail by a 3-ton ogre with anger-management issues," I said cheerfully. "I thought so," my shopkeeper nodded sagely. "So, how about some mineral drops with that?"

I thought my response was honest, funny and clever. She seemed non-plussed, way too matter-of-fact. I felt like a comic who flopped on opening night.

The good news is that I made it safely home with my probiotics, and am healing quite nicely.

So for anyone who asks, I'm fine. I'm good. I'm feeling better. Thank you.

Tuesday, November 20, 2007

New Chocolate Chip Cookie Recipe!

I wish I could say that these are great, but I haven't tried them yet. Maybe you would like to try and report back? This came via email from King Arthur Flour Company, and their recipes are usually pretty reliable. Anyway, it looked intriguing:

Soft Chocolate Chip Cookies

Crispy on the outside, Soft and moist (but not "wet") on the inside, absolutely packed with chocolate chips, these are the quintessential soft chocolate chip cookies. AND—they’re 100% whole grain! Who could ask for anything more?

6 tablespoons (3 ounces) unsalted butter
1/2 cup (3 1/2 ounces) granulated sugar
3/4 cup (5 5/8 ounces) brown sugar, lightly packed
3 tablespoons (2 1/4 ounces) honey
2 teaspoons vanilla extract
1/2 teaspoon espresso powder
3/4 teaspoon salt
1 tablespoon (1/2 ounce) cider vinegar
1 large egg
1/2 teaspoon baking soda
1/2 teaspoon baking powder
2 cups (8 ounces) King Arthur White Whole Wheat Flour, organic preferred
2 2/3 to 3 cups (16 to 18 ounces) semisweet chocolate chips

Preheat the oven to 350E:F. Lightly grease (or line with parchment) two baking sheets.
To prepare the dough: In a large bowl, beat together the butter, sugars, honey, vanilla, espresso powder, and salt till smooth. Beat in the vinegar, egg, baking soda, and baking powder. Stir in the flour, then the chocolate chips, mixing JUST till combined.

Drop the dough, by tablespoonfuls, onto the prepared baking sheets. A tablespoon cookie scoop works well here.

To bake the cookies: Bake the cookies for 10 to 11 minutes, until they’re starting to brown around the edges. Remove them from the oven, and allow them to cool for 5 minutes before transferring them to a rack to cool completely.

Yield: about 3 dozen cookies.

Relapse & Recovering

I am starting to come off of a couple of really bad days. It seems now (after having been to my local doc in a panic yesterday) that I developed slight cases of both pleurisy (chest pain) from the hated (but now gone) drain tubes, and a case of something called c. difficile colitis, an intestinal bug related to long-term use of antibiotics (I've been taking them since the mastectomy on 11/2). The local doc (whom I just met for the first time yesterday) was very diligent in covering all his bases, ordering thousands of dollars worth of tests at the local hospital and requiring about a day of my time. He's going to be pissed, because I decided to give it one more night of wait-and-see before subjecting myself to the maw of modern medicine once again.

I went home and rested. I did a little research online. I think his instincts and preliminary diagnoses are correct, but that I have very, very mild cases of both and will heal on my own with a little time and care. I ate some yogurt. I drank water. I feel better this morning. I think I'll bag doing the tests, but I'll have to come up with an explanation for the doc today, or he'll classify me as difficult or a slacker. He'll know when the results don't come back from all the tests, and then it will be like being sent to the Principal's office. Such is the way of medical care practicing under the shadow of legal coercion these days.

It used to be that doctors weren't Gods, but maybe they worked hand-in-hand with Him? We went to the doctor, who told us what to do, we did it, and most times it worked, and sometimes it didn't. My childhood doctor was almost a family member--he knew more stuff than we did, but he told us when there wasn't anything more he could do and even cried when he did so. He was human, one of the super-humans, but still one of us. We knew he didn't know everything, that not everything was under his control, and we treasured his advice but didn't hold him totally responsible for everything that happened to us. No more.

Now we are expected to be "informed" patients, to be advocates for our own care, to participate in decisions (but acquiesce, eventually, to their superior judgement) and sue their pants off when they make a human lapse or mistake. Doctors have to cover every single possibility, order every available test, over-prescribe drugs or procedures, wonder if their patients understand even a tenth of what they are saying to them (or doing a tenth of what they recommend). It must be hell, and I surely could not live under all that pressure. So I waver. I appreciate the advice and the knowledge, but I'm just stubborn enough to reserve the right to take the information and reject the further exploration for the time being.

I also don't feel like spending money and time and energy I don't have, to satisfy a curiosity (Yes! He was right!) on conditions that given a little time and yogurt might just right themselves. I believe in the body's ability to adjust itself. Having x-rays and CT scans and more blood tests and probably more antibiotics isn't going to balance me at this point. If it gets worse, I will definitely haul myself down to the hospital and do it. But for the moment, I'll just wait and see. That gives me the illusion of control and because he ordered all these tests on the record (and I didn't do them), he has a legal out if things turn nasty. What a world!

Melanie, sainted friend, came over with her ice-chest after work last night, moved into my kitchen and cooked me dinner! I sat at the kitchen table in my nightgown, sipped water and watched her cook. The fettuccine was sublime, mild and comforting. I couldn't eat a lot of it, but it was just what I needed. Her mom's Butterscotch Meringue pie was heaven-on-a-plate. Again, just a taste for me, but it soothed. Bill & Ray were off at Home Depot in Kingsport, so Mel and I had a chance to visit and chat and laugh, just girlfriend stuff. I thanked her kindness by dozing off on the couch, but because she's my friend, she tiptoed out with a smile and a wave. What a wonderful evening with a wonderful generous friend!

So, better and better, bit by bit, day by day. I have to keep reminding myself that this is a long-term project, and I've only just begun (and then buck myself up from that depressing thought). There is a least another year of dealing with this stuff on a daily basis, and I've got to develop both mental and physical stamina for the long haul. As daughter Juli says, "You can't stay at DEFCON-5 indefinitely." There have to be some let-down times.

Monday, November 19, 2007

Missed a day--lost in the ozone

The tyranny of the blog comes back to bite me big-time! Everyone was worried because I didn't post yesterday--it seems I now have a reputation to uphold.

I felt just terrible yesterday. Exhausted, nauseous, gassy, punky, sore and cranky. I couldn't even drag myself from the couch back to bed without groaning like I was in labor. Bill was quite annoyed with me, worried and feeling helpless. There was no fever, so I have to figure it was just the cumulative stress of the surgeries, the overload of drugs, no regular exercise and a bad attitude, after I had just waxed poetic about keeping my emotions under control. Hello hubris.

The good news is that I did get a SHOWER for the first time since 11/2. It felt wonderful to have clean skin, get rid of the itchies and smell nice for a change! Bill changed my dressings and everything looks good and healing. I slept most of the day, and all through the night. I feel better, if not very energetic today. Clear liquids and bland diet should take me back to normal.

A rainy day here in TN--a curl up and watch movies day.

Saturday, November 17, 2007

Healing

I'm so COLORFUL, I must be healing at last! I kept thinking last night that my chest and back really shouldn't still ache so much--but when I undressed for bed, I could see the black-and-blue (and green-and-purple-and-yellow) bruises peeking up from underneath my bandages. So this is what they mean about plastic surgery and post-op bruising, HA! They must have really wrestled those puppies in while I was under anesthesia (and stitched me up tight too, some moves make me think I'm going to just ~POP~ and deflate, so I stop doing those things right away). I feel like I'm right back at the beginning, recovering again from the mastectomy, complaining about the chest pressure and phantom pain. What a wuss I am in the mornings!

I'm trying straight acetaminophen today as my drug of choice. The percs are marvelous for pain relief, but they just wreck my digestive system (in addition to being potentially highly addictive). I'm at the tipping point of side effects outweighing the benefits, and I'm going to see how I do with OTC Tylenol instead.

The oddest physical sensation has been the phenomenon known as "phantom limb syndrome." The removed tissues once contained nerves, and the neuro-pathways that transmitted sensation messages to the brain from the breasts, (such as "my nipple itches" for example), are still in place, even if the tissues and actual nerves are gone. I still get those messages, because the brain hasn't re-routed the old pathways. It's weird to be getting sensation from something that isn't there anymore. Not really uncomfortable, but certainly discomfiting, because my brain tells me something I know to be untrue. Talk about learning to trust one's body again!

In all of this is the renewed awareness and absolute wonder of the human body itself. First, that something I take so for granted could "betray" me so dramatically and abhorrently, next that doctors actually know what to do to begin to fix it, next that it all works so marvelously and intricately, despite the outrages visited upon it lately. I was invaded by disease, assaulted by the tests and the excision, enhanced and rebuilt with techno-parts and now I am actually recovering from all of it. Amazing! Truly, I am a "work in progress!" I hope that even in despairing moments, I never lose my capacity for curiosity and wonder at the whole process.

The other awareness that I recognize on a daily basis is that of mental attitude influencing physical health. The more one wallows in misery, the more misery one experiences. The more I shrug off the details of physical pain and refuse to acknowledge its presence, the less pain I actually feel. When confronted with a situation where I have no control, the one thing I absolutely refuse to do is relinquish control over my emotional and mental attitude. I am not going to let the cancer itself or the efforts toward eradicating it get me down, by golly. Attitude is something I can control, and I refuse to let it take me down a path of negativity.

Everyone keeps telling me that I have a great attitude, but for me, it isn't really anything other than my own stubbornness--and stubbornness is not usually a virtue. But how else is one to behave if one is to cope? I had a great (bad) example when I was overnight in the hospital 2 weeks ago--my roommate was a person who had no resources of control over her mental attitude. She was a victim not only of her pain but also for refusing to take responsibility for her own recovery. She wanted everyone to help her, but she refused to even try to help herself. Once I decided I didn't want to be like that, the rest was easy.

And it's easy to be smug and positive when I have such incredible support from husband, family & friends. Knowing that you're all in the bleachers cheering me on to the finish line has to be the biggest motivator for self-control and self-inspiration there is. None of us walks this path alone, and all of the victories are shared ones. Thank you, and "God bless us, every one!" (even Charles Dickens could climb out of doom & depression and be positive occasionally)!