Perfect Winter Weekend

• Nowhere to go
• A quiet evening snow
• Movies, movies, movies
• Hot, hearty, healthy (for the most part) meals
• Procrastinated projects completed
• Closet purge
• A cold, brisk walk (me)
• Dinner with good friends

I Love Technology

Yesterday, between sitting in the waiting room and an examining room in the radiation center of JHH, I was able to talk with The Tunnel Cancer Center, email the medical oncology department of JHH, answer a question, have a question answered, receive emails back, and have records faxed to Delaware. Gotta love the smart phone. Yet the TCC doesn't have the capability to scan and email a document and we have to drive there today. Sheesh. Get with the times.

Everything we do right now is spur of the moment. If you know us, it's a bit difficult as we are planners. There is that word again, flexibility. We received a phone call on wednesday at 3pm-ish (and an email on my smart phone) that Pat's simulation appointment for thursday morning was a go. Insurance was the hold up. They had not approved any treatment. Pat was positioned in a big pillow of little beads and then it was vacuumed to conform to his shape. He also has these stickers on his body for positioning and also for his little tattoo to come later. These stickers are supposed to stay on for the next week and a half! Good luck with that!

Today we have the plan for treatment. Pat will be admitted on Thursday, January 31 for 3 days of chemotherapy. He will have a little more than 24 hours rest and radiation will begin. We are still waiting on details but believe it will be every day for 5 business days. The we will go to our home in Dagsboro to rest and renew. We will have a local support with the Tunnel Cancer Center should we have any questions or concerns.

A smile and a wink, a care bear, some soup and chocolate chip cookies, laughing with our girls, cards from unexpected sources, Jesus, Jesus, Jesus, a simple "no" text from a supervisor, are just a few of the things that lift us.

Saturday

It's cold but the sun is shining.  Pat is on a plane to Detroit with his Dad, I just Zumba'd away some calories, had breakfast at Mom's, and am going to meet a friend at EVO to drink a beer and shoot the breeze.  It's a good time to get away and do fun stuff.
It's been a quiet week,a wet and cold week, and we've been striving for normalcy.  Audrey left on Monday and we both promptly took a sofa and snoozed the afternoon away.  We met our friend Vito and Kerry that evening at DFH because we knew we would not be meeting them the next two Thursdays (and Thursdays are the highlight of our week!). Other than that it's been work, errands, movies, battling a cold, and staying warm.
Thursday was the visit with the Radiation Doctor.  Quite informative.  Pat will be undergoing interdigitated chemotherapy and radiation treatment.  This treatment entails three days of continuous drip chemotherapy, a day or two off, then five days radiation treatment.  The chemotherapy's job is to kill any stray cells elsewhere in his body while the radiation is isolated to the sarcoma. With this, the radiation doses can be lower and in a smaller area.  There is a lot of communication going on between the radiation department and the medical oncology department.  This treatment depends on the calendars and schedules meshing. The first thing to happen before anything is a simulation for radiation.  They take his scans, his body, his measurements and build this "machine" just for him to hold him in a position for periods of time, days in a row for the radiation.  Once this is started, everything else can begin.  Schedules, schedules, schedules.
Thursday was also a PET scan to determine that there is nothing else hidden anywhere.  We have not gotten the results from that but do not get the impression they are expecting to find anything.  It's a necessary precaution.  Blood work, labs, and and EKG followed on Friday and Emma accompanied him.
In the meantime, Audrey had a doctors appointment on Friday morning.  She and I drove to Carroll County, she snoozing, and me, well...that's another story. Let's just say I had an anxiety attack and needed to see a doctor. Audrey asked why the secrecy? I just could not add one more thing to my husbands mind nor to my children's. But it's also probably why I experienced it, internalizing everything.
So now I am feeling stupid and relieved.  Knowledge is power.
And with the treatment ahead, Knowledge is power.  I have some new books on my reading table, Cancer: 50 Essential Things to Do, Natural Strategies for Cancer Patients, and lastly Doug's Miracle, a re-read needed to keep the faith.
We have had an incredible outpouring of offers, of prayers, of concerns, and even just hellos.  We hear you loud and clear and we are uplifted. Thank you.
We ended our day Friday, all four of us, at a pub downtown, laughing and crying and gathering strength from one another.  That family of ours is pretty amazing.

This Moment

A moment from the week to savor, no words

This Moment

A moment from the week to savor, no words

Previously on....

Over 20 years ago while doing some basic training to pass his APFT,  My husband, Patrick, was experiencing great pain in his knee.  A doctors appointment, an x-ray, and physical therapy did not initially determine the tumor growing into or out of his femur.  In May of 1992 the pain was unbearable and walking was almost impossible so he decided to see an orthopedist.  It was determined there was a tumor in his femur and it needed to come out.  The initial surgery consisted of removing the tumor and packing in the space with bone graft from his hip.  Two weeks into recovery, we received the results of the biopsy which came back positive for cancer.  Surgery number two took some research into options but we settled on a relatively new procedure using a cadaver bone to replace a portion of his femur.  Everything that had been touched/disturbed by surgery number one had to come out.  Approximately 50% of his femur was removed, a cadaver bone replace it, and a steel rod supported it.  The cadaver bone was never accepted by his body.  Two rods were replaced before it was discovered that the cadaver bone was being chipped away, little by little. Again some research.  This time Johns Hopkins provided an answer with another new idea, an internal prosthesis.  Surgery number 4 removed the cadaver bone and replaced it with an internal prosthesis made of titanium (?).  I will never forget his first walk, the expression on his face, and the statement that he had never felt better and walked without pain. Physical therapy taught him how to walk without a limp, something he hadn't done in years.  During all of this, Audrey was born, Emma started elementary school, he retired from the Baltimore County Police Department, worked all kinds of odd jobs, collected unemployment, went back to school, I went back to work full time, but the break came when he became AGR with the Maryland Army National Guard.  He went back to work full time with a mission, a purpose and something he trained for and was qualified. This was a good thing.  I went back to staying home, teaching fitness, doing whatever needed to be done. But this journey was not over. In 2006 a tumor was found in his upper left lung.  JHH routinely checked his leg and lung (the places most likely for a it to metastasize). It was cancerous and was removed (surgery number six).  A year later, another occurred, it was cancerous and removed (surgery number seven).Through all of this no chemotherapy or radiation was prescribed.   A few years go by and walking has become difficult and painful.  The doctors at JHH told him to hold off as long as possible before they made any adjustments.  By the time he can hold out no longer, he is under the care of a new doctor who is, like the others were before, on the cutting edge of medicine.  He can make the prosthesis longer without putting a whole new one in.  "We can rebuild him. We have the technology. We have the capability."  That was surgery number eight in 2010.

This is all just information.  From now on this will be the place for those who care, for those we love, for our friends and family, to receive information and updates on our lives, Patrick's health, because here we go again.

Just a couple months ago Patrick was experiencing some unusual pain in his leg.  By now he and pain have come to terms with each other.  He is not a complainer so when he does, it's serious.  He thought the pain was some sort of overcompensation for his walk.  Physical therapy did not do a whole lot this last time around, and though not a quitter, he quit.  Patrick consulted with his long time doctor at JHH about this pain and he was told to come in right away.  The did a CT scan with contrast and determined that the cancer is back.  A biopsy was taken the following week and confirmed that diagnosis.  This time though, his Orthopedic Oncologist recommended a consultation with the Medical Oncologist in the sarcoma program at Hopkins.  This consultation happened just a few days ago.  It has been determined that this is a new sarcoma of the soft tissue.  The treatment set before him consists of chemotherapy, radiation, surgery, and more chemotherapy.  The surgeons are waiting to see what the chemo and radiation do before making a decision as the whether than can just excise the area of the sarcoma or whether amputation is necessary.

I know all of this information sounds overwhelming and it has been and is, at times for us.  Right now we are just holding steady, homeostasis.   We are optimistic as he has been kicking this disease for 20 years.  He's just got to kick it again.  The doctors are optimistic. One day, talking to the girls, I told them that at times this is not going to be pretty but (don't read if you are offended by the F-Bomb) your Dad is one Bad Ass Mother Fucker. He is a strong man, he is a courageous man and he is at peace with what needs to happen.

So it begins next week with a Marathon Day at Johns Hopkins Hospital on January 17 with all the preliminary tests, blood work, consultation with the Radiation doctor, etc.

On January 19, Patrick and his Dad go to Detroit to go to the Auto Show.  It's been in the works for a while.  They have plans to go to the Henry Ford Museum and to see an F-150 come off the assembly line.  It will be a good trip.  The only thing I'm worried about is them driving a new truck off the line home!  While they are gone I have a long list: a photo taking field trip with a new friend, a trip to Aunties, mega house cleaning, setting up meals, and packing a regular travelling bag for I'll be living with one of the girls several days a month while Pat has continuous chemo.

Li'l Sis challenged me to create something from all of this, to capture the beauty of all that happens in life, through photos and writing. I have the image from the film Pieces of April where the son is capturing his Mother's journey through breast cancer and it is full of wonder, truth, raw beauty, sorrow and joy. We write this and share this because we know we have an amazing support system.  Peace to all of you in your journey whatever it may be.

We will do this one day at a time and focus on the now.

Dana and Pat

The Annual Trek

When we were looking at houses in Delaware, we considered Lewes but the girls said No! It's magical and if you move there it might lose its magic. So we are where we are and we still make the short trek to Cape Henlopen for our family camping trip.  It's still magical and I love living so close that I can go any day of the week, even though I don't.  I hope to head back this week for a paddle on the bay with the dolphins.
This week though:

The two of us took two cars, two kayaks, 12 chairs, 4 bikes, one paddleboard, one dog and a pop up that sleeps 6 people and 3 dogs fairly well.

 Li'l Sis and boys joined us for a day but spent the night at our house (see! close enough!)










Audge and Noah joined us Monday night

A new family joined us, My Handsome Prince's cousin, her man and children.  We grafittied their reservation, how could we not?

We played a little in the dunes

We coveted this camper (it matched the truck perfectly!) and posed it as if it were towing, and yes, we had permission.

I had a partner in crime though we never made it to the LYS.  I will be picking bits of pine out of my baktus scarf forever.

Some snoozed

Emma, Chris and Apple Sunshine arrived Thursday and completed our gang

We cooked over the fire

 We took fun family portraits, played games, climbed the observation tower, walked, walked, walked, had a mini shower off, shoppy shoped in town,  braved the beach several times despite the wind, and made the trip to DQ only once

And ended on Father's Day out on our deck, freshly showered, smelling sweet, grillin' and chillin'

And for the record, Lola enjoyed her first camping trip.

This Moment

Following SouleMama I have decided to start Fridays - This Moment, capturing a moment from my week to savor and share.  No words.

Walking, Walking

When the girls were little and learning to walk we used to sing the Hap Palmer Walking Song.
Walking, Walking, Walking, Walking
Seems so easy now
I remember when I was small
And did not know how
etc
We still sing this. We sing about everything, we occasionally quote movies and always talk for our dog. Silly stuff that continuously amuses us. Anyway, I recently got a smart phone and finally remembered (and figured out how) to download a pedometer app.  Honey and I walk almost everyday in my off season and I've been wanting to know how far we walk.  Well now I know how far, how fast, how many calories and how many steps.  Keep in mind we do take time for visits with friends like Rudder aka Runner who is usually in lock down because of his nick name but also lounges on the trampoline and watches for us when he is out on good behavior.

Todays walk: 1.3 miles, 19 minutes, 113.6 calories, 2,864 steps.

My phone also has a GPS so I can use for my rides.  Oh hello technology.

One for Li'l Lo

First sweater of 2012.  Yes, it's for a dog. Yes, it's luscious malabrigo. But isn't she/it cute?  

The List

Things I've been thinking about.

2012

Knitting:

• 12 sweaters in 2012 which include one for each of my daughters and one for my husband and all the rest selfishly mine, although a gift sweater or two in there is not unreasonable
• A pair of socks a month
• Christmas gift knitting, start early, like May, well at least with one or two items

Photography projects

• In the Hood
• Better Days
• Project 365 - yup, attempting again, what is this number 4? A new camera does this you know
• Physical albums and online albums organized

Sewing

• Alabama Stitch skirt
• Oh Happy Day Banner
• Start sewing my way through the Design Your Own Clothes book by Cal Patch
• Cushions for sofa

Self  - Physical

• Shed some weight, not putting a number on this
• Continue walking the dog 2 miles 5 days a week off season, in season too?
• Practice and learn Yoga with intention
• Ride 2x a week (right now at 1x a week so 2x is a reasonable goal), possibly do the Salisbury Century
• Regular massages
• Dermatologist
• Dentist
• Insanity might be too insane but at least try it

Self improvement - mind/spirit

• Get certified - either PT or Group Fitness - should not be that difficult
• Take college class or two
• Go back to rug school in Cape May
• Meditate - goes along with the Yoga and intention above
• Read/listen to poetry
• Write what I know'
• Sunset on the bay

Household

• Tackle the kitchen - needs paint, tile, but how much more after that?
• Reupholster couch in living room - already have fabric for cushions - check out Happy Chairs
• Learn household finances
• Locate and update wills
• Check and update passport if necessary
• Garages - yeah right
• Garage gym

Work

• Input all backlogged finances
• Make a What's cooking today board
• Make a Prayer bulletin board
• Contemplate, pray and work within reason - not sure what I really mean with this just know that I need a new attitude

Garden/Outside

• Around deck needs to be weeded, planted and mulched REAL GOOD
• Plant sunflowers on the side of the house again
• Stabilize and straighten antique sink and plant around
• Fig tree in a pot
• Clothesline
• Sandy fire pit area
• Build one raised bed
• Large tropical plants for corners of the pool
• Large umbrella for corner of pool

Family/Friends

• Take time for a getaway with my husband
• Take time for a getaway with my family
• Continue fun weekends with the girls and their boys
• Baltimore once a month to visit someone
• Vito and Kerry over for dinner and games
• Genny and Dave over for dinner and games

Miscellaneous

• Teach my daughters to drive a manual transmission
• Take my Jeep onto the beach
• Sundays at Herring Point once in a while

This list will continue to grow and grow and grow.  It's just things that come to mind, some may materialize and others will obviously not.  While not a stranger to lists, The Thrifty Knitter makes an Uber list every year.  I'm taking notes.

Learning to Ride

I talked to my Uncle a month or so ago.  Whenever I talk to him he asks me if I am riding and always seems a bit surprised,  maybe even disappointed when I answer no.  He rides all the time, seriously.  Like 90% of the days of the year.  In the mid west.  He's 70ish.  What's my excuse?

I used to ride. a lot. I loved to ride, to watch, to smell, to listen.  I had my favorite rides that I knew how to lengthen when I felt strong or shorten when felt tired or weak.  I loved to climb, yes I did, because I knew I could coast downhill and rest.  I was slim and strong.

I'm not sure what has been holding me back, a fear of some sort.  So today, even when the wind almost whipped the storm door out of my hands, rather than go inside, I stepped out of that fear, that zone.  I rode and laughed and cussed at the wind.

I'm learning to love to ride again.  I am learning the less traveled paths, sans dogs and that don't dead end into a body of water.  I'm learning to ride in colder weather because that is the time I have.  I'm learning to love the wind as it challenges me, strengthens me. And of course I love that wind as it pushes me home.  I love to cross the water, it never ceases to amaze me and bring me peace.  I love the smell of scrub pines.  Yes, I'm learning to love to ride again but I will never, ever, ever love the smell of chicken farms.

Coolness Factor

I straddle the line between coolness and dorkdom.   I know there have been times when I have made people (myself) cringe with something stupid.  Most of the time, though, I am not aware nor do I care.  My Handsome Price bought me a Jeep Wrangler as a surprise.  He bought it because I had been talking about having one, an old one, for taking out on the beach, learning to surf fish.  He bought it because he said I don't allow myself these things.  Well, it is a cool, 2008 Jeep Wrangler with power windows, power door locks, great sound system, a tow hitch and can be totally broken down and open for the summer.  Way cool.  But even cooler is I am now part of that Jeep society that waves at each other, just a couple fingers or a light hand off the steering wheel.   The first couple times I received the wave I went into dorkdom.  I didn't realize what it was then, belatedly stuck my arm way out for the wave, big and strong.  I'm sure I made those Jeep owners cringe. They definitely knew I was a new owner.  Now I'm cool.  Just a raise of a few fingers, a nod and I keep going but inside I'm screaming "yeah, I'm cool, I'm driving a Jeep" and laughing the whole time.  It's a Jeep Thing.

Cheers!

• To flexibility
• To the family that Zumbas together
• To lovely little children
• To family, Czechs and crabs
• To flexibility
• To sand sastles
• To making lists
• To Soul Rebels
• To lovley adult children
• To potato soup
• To flexibility
• To Sissys
• To Family Camp
• To Pioneer Woman's Cinnamon Rolls
• To noise and chaos
• To local breweries
• To chocolate stout ice cream floats
• To outdoor showers
• To Czech specialties
• To fun in the kitchen
• To vacations and family reunions beginning and ending
• Did I mention flexibility?

http://www.flickr.com/photos/deeprundays/6041642643/in/photostream

Practicing My Purpose

I've struggled this season about my job.  I've had a good season.  It started well, continued well, and don't foresee any major issues, as opposed to the last two seasons (which were challenging beyond reason on retrospection).  My struggle comes from sacrifice.  I miss my girls, being there for them, assisting them.  I miss my husband and our social life. I miss the rest of my family and the guests who visit my home.  I miss kayaking, biking, vacationing, knitting guild, friends and basically a normal life.  I miss being selfish.

This week I had 67 guests, 54 teenagers.  During the week I received via email this video from my friend, my former minister, and guest of the Conference Center

with the reminder to keep "practicing my purpose".  Today those 67 guests were leaving.  At breakfast I left the main building where our meals are served.  As I walked back towards the building, I notice the teens were all sitting quietly, getting their cleaning instructions from their counselors or so I assumed.  As I tried to enter the room discreetly, they all stood, clapping loud and long.  I received a standing ovation.  And once again, a group of teenagers touch my life so incredibly, so closely, that there is no ignoring the purpose.  And so my struggles are quiet for the moment.

Enjoy Your Meal

This is what we say to one another at every meal.  We eat all our meals together as staff with the guests of the Conference Center.  For guests, meals are a time of conversing with one another, playing various table games, such as the cup game, elbows on the table, or the order of the fork.  For Czechs, it is a time of silence to concentrate on the meal in front of you.  Breakfast is the worst for me, after two or more cups of coffee, to keep silent.  I try to honor their tradition and they tell me no!  We are in America!

The other day I was honored to be invited to lunch at their home, next to the Tabernacle, for a typical Czech meal.  I entered the Scott House which serves as the staff house to the smell of garlic and foreign music, Bara singing along, happy in her role as hostess.  The boys came down, both remarking on a huge inhale "smells like home".

We are family for the summer.

We stuffed ourselves on garlic soup, some fried dough, and the only Czech name I remember Knedlicky (blueberry).  It was delicious.  It was wonderful.  It was hearwarming.  And I was silent expect for the moaning.

Just about everyday we comment on our favorite meals as we prepare the same things over and over and over and over again.  For the record, my favorites are:
Breakfast - french toast
Lunch - italian sandwiches and caesar salad
Dinner - chicken fajitas, rice and corn pudding

But to eat Czech specialties....there is no comparison.

Mowing Meditations

• Dang!  I'm already tired of this.
• Wish I could get the hang of the zero turn
• How many calories does this burn, I wonder?
• Stand tall, chest open, shoulders back and down, pelvis in, crown of head reaching toward the sky
• I hope Honey hasn't escaped the back deck
• I'm really thirsty
• Dammit Jim!  Forgot the sunscreen.
• Should I go get 10 bags of mulch when I'm done mowing?
• I love to knit - that baby sweater is going to be so cute!
• Should I mow Jimmy Stewarts lawn?
• This is our little spot on this earth, take joy in taking care of it
• What's for dinner?

Tuesday Haiku

A cup of coffee
then off to work I go
While Honey stands guard

Walking on Sunshine

This makes me incredibly happy these days.  It was Easter weekend with our girls, their boys and their dogs, My Handsome Prince and his cool ride

Other items on the list today

• The truck being street legal
• A clean, well stocked kitchen
• Opening day of the Farmer's Market
• Glenn, from the CSA, who didn't recognize me at first, called me back and wanted to touch my hair
• Seeing a friend from DFH while driving with a smile so big and a wave so huge he hung out of the car to do it
• Coming home to a manicured lawn courtesy of my two wonderful neighbors
• Izze Clementine soda
• The promise of watching Glee while knitting mittens from leftover bits of yarn that are turning out so cool
• Returning to the blogging world

The Long Road

We left mid afternoon on Saturday to drive to Martinsburg WV to celebrate the 50th wedding anniversary of Auntie and Uncle.  We had just made the trip across the bridge 48 hours earlier for MHP's follow up at Hopkins.  These drives are long, mostly pleasant, allowing us to listen to good music, good programs, or have interesting, sometimes heated, conversation.  We discussed what our T-shirts would say (did you watch Glee?) and talked about the party we were attending, looking forward.  The party was a grand affair, good food, good drinks, lots of conversation, nostalgic and fun, for Auntie and Uncle are fun people.  On the long road home, we had the girls with us, we were laughing and joking, talking about the evening, revelling in the good time and in family.  And then Audrey asked quietly "Daddy, do you ever get mad?"  So quietly, it had to be asked again or maybe it wasn't understood the first time, but it was clear the second.  And we all listened to his answer.  How he is frustrated in being told what to do or what he can't do, how not knowing whether this was his last surgery or not, or realizing that most likely it was not, or how the cancer will or will not spread.  Yet he remains positive, hopeful, resting all in the caring hands of a young Doctor who lights up when he sees him and calls him Buddy, enjoying life the way he knows how, all of us knowing it's a long road, yet taking that long road, willingly for there is joy along the way.