Tuesday, April 30, 2013

Rainy Days and Mondays

Yesterday was a perfect rainy Monday.  We slept in, drank our coffee and though we had an agenda, it was somewhat relaxed and good stuff.  We drove to Lewes to book the beach for a wedding and The Virden Center for a reception.  Those tasks finished it was just about lunch time.  We weighed our options and decided on A Touch of Italy in Lewes.  We had water with gas (okay it was San Pelligrino), a 60 minute, and delicious food.  For one moment, I was transported back to our trips to Italy.  Perfect.  We stopped at Mom's on the way back to help with a couple minor items.  It's so nice to be able to do that on a whim rather than carve out a whole day like we used to.  And then...the best...an afternoon nap, jammies, movies, leftover lunch, knitting, and nothing.  Perfect.

Today is another rainy day.  It's not quite so perfect but productive.  I am at work doing a little bit of everything, acccounting, waiting for a group, placing orders, burning my lunch and having the fire company dispatched.  I followed protocol, unplugging the toaster, reseting the fire panel, calling the security company but it was too late. The worst part?  They are one block away and had no idea where the center was located.  OMB!  I had to go out onto the street and flag them down.  A little worrisome.

My Handsome Prince is scheduled for surgery on Friday.  We will head to Baltimore early Thursday morning for the last little bit of pre-op tests and a consulatation with the plastic surgeon which got overlooked last week.  We will go out to dinner with our girls and future son in law, hold hands, say a prayer, laugh, whatever we need to do together to ease our hearts and minds for the next day. Friday will begin very early arriving at the hospital by 5am.  They are proposing a very difficult, big surgery.  Originally when the surgeon said excise the sarcoma, we thought exactly that, just the muscle area where the cancer is.  No.  They hope to be able to replace from hip to knee, taking out the original prosthesis, the radical extension put in two years ago, his hip, and then excise the dead sarcoma from the muscle.  Since they are doing so much work, Pat has asked that they work on his patella, installing a button under it to prevent it from rubbing on the prosthesis which has caused him pain for years.    All of this information was part of what shocked us last week.  I asked his long term orthopedic oncologist if Pat would be able to walk his daughter down the aisle in a year.  He smiled and said "I like that,Yes. " There are risks involved but the greater risk is doing nothing at all.  We anticipate a hospital stay of at least a week and maybe a few extra days in Baltimore just in case. 
Tomorrow Pat will attend yet another deployment ceremony for another one of his units.  This is number three.  Over the next couple days we will gather our thoughts and questions, pack our bags, make necessary arrangements, and hit the road. 

Friday, April 26, 2013

Somebody Scream Y'all!

Jazz fest started today. Another year originally planned and again foiled. Emma and Chris and Cindi are there representing. We drove home today, sunroof open, Soundtrack from Treme blaring, and even stopped to buy tickets to see Anders Osborne opening acoustically for Toots and the Maytalls. And then we crossed the bridge to slower days, a weekend with Audrey and friend Robert, a weekend of work and decisions for me and a full week to prepare. Later Emma called me and let me listen to my man Anders at the fest. All is right, right now

Wednesday, April 24, 2013

Spring Break

Well, it's over. It was nice while it lasted. Tuesday was a scheduled marathon day at Hopkins. Pat was scheduled for CT scans, pre op work with EKG, blood work, consults with orthopedic oncologist and plastic surgeon and a possible meet with the medical oncologist. We expected a very, very long day but not an overnight stay. Only about half way through everything and running extremely late, we met with his long time orthopedic oncologist and surgeon. He gave us the results of Pat's chest CT scan, which showed blood clots, a very brief overview of the upcoming surgery and then immediately transported him to admitting. I'm not sure how long it was before we closed our mouths.

I felt like I needed to make a quick run home to attend to some things at home and work and pack a bag. So I left.

I hate leaving him.

I managed to get everything done and hit the road by my goal time. I was back in Baltimore, back at Hopkins by 3:30 wednesday. Audrey was there shortly after me. Pat is feeling fine other than being in a hospital when there are better things to do like even mowing the lawn (thanks Bill and Patti!). He is scheduled to have an IVC filter put in today, which filters any clots from his legs and prevents them from traveling to his heart. The hematology crew said his body will take care of the clots in his lung and they have put him on anticoagulants. He will have to be taken off the anticoagulants about 24 hours before surgery but that's another post.

It was a beautiful evening. I took a beer out onto Marie's deck and listened to the sounds of the city, animals, kids, neighbors and an occasional bus. It was good. I spent an hour catching up with Marie. It was good. And now I will go I to the hospital and knit and wait. I hope we will go home today.

Sunday, April 14, 2013


It's about time, right? Life has been so close to normal I didn't want to upset the balance by writing an update.

Pat has been home for a little over a week. His radiation burn is looking good. We went to DFH on Thursday night, I've gone back to work, he has gone to work, we went to church, we've been attending to yard and housework. Normal, sweet normal. He fatigues so easily but it's remedied by a nap or two or three.

Tomorrow we head to The Tunnel Cancer Center for a follow up appointment from his hospital stay at Bebe but also to have the local contact for the next round of things. His primary care and treatment will still be at Hopkins but to have a local doctor for bloodwork, problems, whatever, will help.

In the meantime, I have an incredible nesting urge.

Thursday, April 04, 2013

Happy Thursday

We love Thursdays. It's our usual night out at DFH where we meet our friends, have a mug of great beer and pizza. Well, we haven't done that in quite a while but there are still good things about Thursday.
Clean underwear
A plumber who hugs (and saves my sorry ass)
Sing a long with Jackson Browne
The view from the Indian River Bridge
And the best for last, taking My Handsome Prince home from the hospital.
Here's to Thursdays and normal.

Monday, April 01, 2013

Finding Our Way

My Dad heard a story on NPR about whales and communication. Not only do they sing. They compose their whale song. In the deep expanse, the depths of the ocean, something so much bigger than them, they find their way, singing. I'm pretty sure he used this in his sermon yesterday. It's been in my head ever since he told me.
We are finding our way, finding our way through a massive hospital, finding our way through the red tape of insurance crap, finding our way back and forth, work and not working, but mostly finding our way through this illness, finding our own way to handle the pain, the fear, the unknown. I, personally, walk the line between many emotions, sadness, helplessness, bitterness and hope. Hope wins out most of the time.
It's been a rough weekend. Pat has been experiencing some radiation recall brought out by the chemotherapy. He is in pain. Then today, which is six days after chemotherapy ended, he developed a fever. His oncologist recommended a visit to the local ED (rather than the drive to Hopkins)and be admitted if necessary. She made the phone calls and gave specific instructions to the locals, what to do and what NOT to do. By the time I left, he still did not have a room as a private room requires a bit of maneuvering patients around. He had been made more comfortable, given antibiotics and pain relief. I think last nights drive home was longer than the drive to Baltimore, though closer. I left him in an unfamiliar hospital with staff unfamiliar with his illness and treatment BUT I hung on (and still do) to that glimmer of hope because the staff listened, they accommodated, his oncologist and radiologist are always there for communication, for us and for this local staff, and because I have to.
With all I have to do today, digging my feet into the sand and watching and listening to the ocean, to that great, vast, ever moving body of water is a priority.