Back to Blogging in the New Year

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 4^th 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