Wednesday, January 30, 2013


I've learned how to prepare for a storm. I've boarded up buildings, tied up furniture, stockpiled food and water, taped windows. For this next storm, I am at a loss. I've packed up my clothes, have enough knitting projects to last a year, found a place to live temporarily, and bought enough hand sanitizer and chlorox wipes to probably have stock on them. I've made doctors appointments and gathered records. Ive made arrangements for the dog, the mail, and even to have my sofas cleaned. Tomorrow we leave. Pat receives his port in the morning and will be admitted into the hospital that afternoon/evening. I am not even sure how long we will be gone though the estimate is 9 days, initially. I leave his care in the capable hands of doctors, I gather my strength from generous and willing family and friends and I pray.

Sunday, January 27, 2013

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

Friday, January 25, 2013

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, January 19, 2013


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.

Friday, January 18, 2013

This Moment

A moment from the week to savor, no words

Friday, January 11, 2013

This Moment

A moment from the week to savor, no words

Thursday, January 10, 2013

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