It’s a New Year! New changes, new dreams, new planning. I
have not blogged in almost five months and I miss it. I should think about
renaming the title of my blog because so much has changed and we aren’t in New
York City anymore. Jim and I have been non-stop since returning home to Virginia. In
August we met Jim’s new doctor, Scott Rowley, at MedStar Georgetown University
Hospital. He will be our go to guy when we are not traveling to Memorial Sloan
Kettering for follow ups. We like Dr. Rowley and his staff. Georgetown just
opened a new wing for pre- and post- transplant patients an ironically Jimmy
was their very first client. As the medical staff started weaning Jim off his
anti-rejection drug he started to have complications. He broke out with a full
body rash, swollen face and red irritated eyes to name a few symptoms. Luckily
with bumping up the anti-rejection drug and taking steroid creams the reaction
eventually subsided. If he is weaned off the anti-rejection drug too quickly
his new immune system (the donor’s cells) will start seeing Jim’s organs as
being foreign and could start attacking them. The skin is the largest organ we
have so skin is almost always attacked first.
In August we spent time at our
weekend place on the Shenandoah river.
It was hard for Jim to sit around and
not work in the yard or climb up on the roof and clean the gutters. For the
next year he needs to be especially careful around molds, fungi and spores. His
lungs are extremely susceptible to developing a potential life-threatening infection called
pneumocystis pneumonia or PCP. He takes a medication to help prevent PCP but in
the meantime has to stay away from mowing the grass, cleaning the gutters,
changing the filters in the house and all the “honey do lists” that he is used
to doing.
On September 1st we put our river house on the market.
Although we absolutely love the house and the views of the mountains and river, we decided it was
too much to keep up at this time and we came to the realization that wherever
we end up retiring we need to be close to good medical care. Jim’s parents
stayed with us the first two weeks of September after his dad had hernia
surgery. We put a microwave, toaster and small refrigerator in the basement for
them so they didn’t have to constantly travel up and down the stairs.
They were not the only house guests we had. We also watched my friends dog JJ for ten
days when they went to Florida to see their daughter. Jane and John were the
ones who took care of my dog during the 7 ½ months we were in New York. The two
dogs are buddies and it was good for Boo to be with JJ again.
We made a trip back to MSK in mid-September to meet with Dr.
Sauter. He was pleased with Jim’s progress so far. Jim slowly transitioned back to work. He has to be careful around crowds and meeting clients outside of the office but it felt good for him to get back in the saddle.
Debby and Ashley hosted a bridal shower for Sara which was
over the top with food and beautifully decorated rooms. Sara and her
bridesmaids went to Charleston for a long weekend and Richard and his guys went
to Nashville. I spent a lot of time researching the final wedding details.
November 4th was approaching fast.
In the beginning of October family and friends joined us for
the Light the Night Walk to raise money and awareness for The Leukemia &
Lymphoma Society. It was the first time we had seen many of our friends since
we left for New York. What a great night it was.
Jim had a nerve study on his hand to try to figure out why
he has muscle wasting and loss of movement and strength in some of his fingers.
We met with the hand specialist, Dr. Henn, and he recommended surgery to
release the ulnar nerve to prevent further damage to his hand.
Much of the month was spent preparing for last minute
wedding details, dress fittings, creating table arrangements, decorations,
photos and signs for the venue.
November 4
th was the big day. The rehearsal
dinner the night before took place at Sara and Richard’s favorite winery, The
Barns. We had the whole “barn” to ourselves for a night of barbeque, good
conversation and good wine.
The wedding day started off early for the girls as we all
gathered in Sara’s room at the hotel to have our hair and makeup done. The
wedding was at 5:00 and the temperature was just warm enough that the ceremony
was held outside. It was perfect. The night was filled with good food, dancing
and celebration.
Three days after the wedding Jim and I drove to New York to
meet with his doctor. Jim had a Pet Scan and received a perfect report. We
could not have been happier. This was his first Pet since leaving MSK and
reading the words “No evidence of disease” gave us a sigh of relief and
determination to venture forward.
On November 11th he had surgery to release the ulnar nerve
and move it to another area of his forearm. Unfortunately the trauma from the
surgery caused him to break out with graft versus host disease, a common
complication for transplant patients. Jim’s hands and feet started to itch and
swell, his mouth became blistered and painful and his taste changed. He had to
wear a soft cast (which really was hard but not permanent) for several weeks. More
importantly he was not supposed to lift anything heavier than a cup of coffee
with his right hand.
During the excitement of the wedding we received a contract
on the river house. We spent our last Thanksgiving there and invited Jim’s
sisters and their families to join us. Somehow in-between trips to New York,
Georgetown and Jim’s nerve surgery we managed to pack up the river house and
transport things back to Fairfax where we stored everything in the basement
spare bedroom, the garage and the shed.
In December Jim’s parents changed their minds and decided to
spend the holidays with us after all. Their nice bedroom was now a storage unit
so we hustled to bring beds upstairs and create a makeshift bedroom for them.
It all worked out and the Christmas holidays were wonderful. Jim and I reflected back to a year ago when we walked the streets of New York on Christmas day
still dazed and devastated from the news that his disease had returned and he
would not be getting the transplant after all. We were both thankful to be home
with our family and our dog spending quality time with our kids. We have three
now: Sara, Skye and Richard. J
Recently I hung two bird feeders on our Japanese maple tree in the front yard. I refuse to hang bird feeders in the backyard because they attract squirrels which drives Boo crazy and he runs back and barks too much. The front yard is more manageable. Squirrels still cross the front stoop and try to get at the feeders while Boo sits inside the front door and watches them. Occasionally he will get very frustrated and start barking. This afternoon, while it was still drizzling, I let him out the garage and he ran around tracking the scent of an animal. After about 5 minutes I looked in the backyard and did not see him. When I looked out the front door I found him at the side of the house entangled in some of the Christmas lights from the front bushes. He could not move they were wrapped tightly around his neck and back legs. I had to snap a picture of my mischievous boy before I freed him from his tangled mess. There is never a dull moment when Boo is around.
