Thursday, August 11, 2016

The River


Sitting on the deck in the dark with an Elmer T. Lee bourbon in hand. Cicadas and crickets competing for attention. The sounds of the Shenandoah River rapids at the bottom of our property. Lightening and thunder rumbling over the mountain, dogs barking in the distance, faint sounds of jets in the night sky, the wind rustling through the tall pine trees. Bright stars forming in the night under the light of the first quarter moon. We hope to be awake long enough to watch the Perseid meteor showers.








Boo is happy, a little older, a little slower, a little lumpier, a lot more gray.


We are far from New York City, trying to feel normal again, trying to push the fear aside and get on with life.




SaveSave

Saturday, August 6, 2016

Home Sweet Home










Getting out of New York was not easy. We rented a car from Hoboken, New Jersey. First we took a cab to the ferry terminal and then took the ferry across the Hudson River to New Jersey. Once we were in the car we had to come back to Manhattan and pick up our belongings. It took 40 minutes to drive the 5 miles back to the Hope Lodge. Jim circled around while I ran back in carrying our luggage, cooler and other belongings back down to the curb. The only other way was for me to circle around and I refuse to drive in the city. We made it and were off by 12:30. It was an incredible feeling to be leaving New York. We did not care if it took us 5 hours or 10 hours to get home. We were going home!
When we arrived home our yard looked terrific. There were flowers planted all around and even in containers in the back. There were balloons and ribbons and two big sign with friends and family signatures welcoming us home. We walked in the house and it was so nice to be home. Everything was clean and straightened. Sara had stocked the refrigerator with essentials and Laura brought over fresh eggs from her chickens.




After emptying the rental van we drove to the Stone's to get Boo. He remembered us and appeared excited to see us. He definitely has aged and has more grey hairs. We have aged too. We visited with Jane and John for a while and Sara and Richard came over bringing grilled chicken and rice. That night Boo slept in our room. He still has all his old habits, including his bad gas. Jim has to wash his hands well every time he pets Boo but it is so good to be reunited.


Wednesday, August 3, 2016

Last Night in the City

One last trip back to the hospital this morning for blood work and to meet with Shani. One of Jim's kidney values was elevated because of the Bactrum they put him on but the doctors feel confident it will slowly come down on its own. It is important for him to drink lots of water which will help flush it out. We said goodbye to Shani once more then went up to the transplant floor to leave cards for two of Jim's favorite nurses. Unfortunately they were off today. After leaving the hospital we stopped briefly in the Catholic Church where I used to sit when Jim was in the hospital. Such a beautiful church.


Our next stop was Dr. Howitz's office. We had gifts for him and Peggy, his nurse practitioner. Once again neither was in today. Darn...we really wanted to see Dr. H. We left the presents behind and started to walk back to the Lodge. The sun was out and the temperature was in the mid 70's. We passed a lot of restaurants on our way back. They all have little tables set up outside even when the view is not palatable. There was a sign out front one of the restaurants that caught my eye.

In the afternoon I spent the time packing. We have accumulated a lot of "stuff" over the last 7 months. We are so glad to be leaving. The last couple of days someone very close to our room keeps spraying lysol. The smell wafts into our room and it is very offensive for Jim and me. Our eyes burn and personally I can't stand the smell. I even have a towel rolled up at the bottom of the door but it doesn't seem to help.

Tonight we said bye to some of the couples we have gotten to know over the last few months. We exchanged numbers and emails and hope to stay in touch. Time will tell. It is still hard to believe we are going home. Tomorrow it will be challenging to pick up the rental car from New Jersey, drive it back to the Lodge and hurry to put all of our belongings inside. There is no place to park out front so Jim will have to drive around until I manage to get all the luggage downstairs. He wanted me to stay with the car but that is not happening. I could never drive around here. It is just too crazy.



Tuesday, August 2, 2016

And the Verdict Is?

We did not sleep well last night. We were so anxious to get the PetScan results. Jim got up by 6:00 am even though the shuttle didn't leave until 7:30. First things first Jim had a pulmonary function test. His test results were better than the one he had pre-transplant. Next we went to Suite 4 for lab work and vitals. They took 7 vials of blood. Lastly we went into Suite 2 and waited for Dr. Sauter to talk to us. Shani came in first. She had a slight worried look on her face. Jim and I must have looked like two deer in the headlights because she asked softly how we were doing. What she meant was how was he feeling from a sinus infection stand point. We told her we were worried about the PET and then she nonchalantly said Oh it was fine except for the sinus area lighting up.

WHAT...just like that! The PetScan shows no sign of disease. This is one of many PetScans Jim will have over the next 2 years to monitor his condition but what a way to start! We now can return home on Thursday. There are many problems that can still arise but we will continue to take life one day at a time.

Before we left we gave Dr. Sauter and Shani presents and took a few pictures. Jim will see a colleague of Dr. Sauter's in two weeks at Georgetown Hospital and will return for a follow up at MSK on September 16th.

This captures us nervously waiting for the PetScan results and then Jim with his awesome transplant doctor and Shani.

Thank you everyone for the prayers and good thoughts. God is good.






Monday, August 1, 2016

Hudson Calling

Today we went for a walk. We had to get out of the room and get some exercise. We walked to the High Line and went the opposite way of our normal route. We ended up walking along the Hudson River and found Hudson River Park. It was overcast and the temperatures were in the mid 70's. Nice weather for August 1st. Hudson River Park is the longest waterfront park in the United States. It has transformed four miles of decaying piers and parking lots along Manhattan's West side into beautiful, urban recreational areas. We passed playgrounds, benches overlooking the water, a carousal, a skateboard area and much more. Neither one of us could believe we never walked down far enough before to discover it. We only touched upon a small area of the Park. The Chelsea Pier was interesting. They have bowling, rock climbing, batting cages, restaurants, sailboat lessons and more. We walked 4.5 miles total before arriving back to the Hope Lodge.









I am becoming obsessed with watching the drug dealing homeless ring outside the window. Sadly tonight I saw a child hanging out with the crowd. She must be about 4 years old and it is very disturbing. I really should pack up my binoculars so I don't keep going to the window to watch them.

Jim and I have presents packed and ready to give to Dr. Sauter and Shani in the morning. We hope to hear only good news when they go over the results of the PetScan. It is anxiety producing to wait for the results but it is part of the process. I have a good feeling about it and we will know soon enough.




Sunday, July 31, 2016

"We gotta get out of this place. If it's the last thing we ever do. We gotta get out of this place 'cause boy, there's a better life for me and you." -the Animals

Sunday morning. I'm looking out our bedroom window on the 11th floor of the Hope Lodge. Our view overlooks West 31st Street, a major thoroughfare linking Penn Station and Madison Square Garden to Avenue of the Americas. It is drizzling out and there are not as many people walking the beat. Across the street I can see two bodies from the waist down lying on the sidewalk. One is a woman in a skirt with tattoos on her legs and the other is a man. They are lying on a blanket. I wonder if they are some of the people I was watching last night. You see around 11:30 pm I was lying in bed and could hear yelling from down below. I got out of bed and sat on the window ledge with my binoculars watching a group of 6 or 7 people who had set up camp across the street. There was one woman and the rest were men. When I say set up camp what I mean is there is a group of homeless people who have their cardboard, milk crates and in this case a couple of folding camp chairs. They have their belongings in backpacks or plastic bags and they congregate near the curb but take up space on the sidewalk. I watched them for awhile as they passed cigarettes back and forth. One man took his shoes off, another his shirt. Several of the men appeared very fidgety walking back and forth down the sidewalk. One appeared to be drinking a canned beer. I watched them for half an hour and decided to go to sleep.This morning several of them were still there. The camp is still there. The two people sleeping are a block down from the camp. I will never get used to seeing this.


There are a lot of new people on the floor. Larry and Val and Jim and I are the seniors here. One of the newbies is Gail. She recently had a stem cell transplant using her own cells. I was talking to her daughter, Karen, in the kitchen the other day and she told me her mom had a rare form of T-cell lymphoma. I about fell over when she told me it was Angio-Immunoblastic T-cell Lymphoma, the exact same type of cancer Jim was diagnosed with. Gail is in her late 70's and very frail. She writes poetry and has three books published. She is a self proclaimed hypochondriac, married to a retired ENT who according to Gail has very little patience with her condition. Maybe he is having a difficult time accepting her diagnosis. The people we meet and the stories they tell are very interesting. Her daughter, Karen, who is 46 years old was actually born at Fairfax Hospital and she went to George Washington University for college. Gail bends our ear every time we see her in the kitchen. She does not know Jim has the same diagnosis. I feel it would not be good for her to know that he relapsed soon after his transplant using his own cells.

The rain stopped and I encouraged Jim to take a walk with me. The streets were less crowded so we thought it would be ok. WRONG...we were only on our second block of our walk before seeing a man urinating against the tire of a parked car right out in the open as people walked by. I got a sick nauseous feeling in the bottom of my stomach. On our way back to the lodge we intentionally walked past the homeless group across the street. Jim is convinced they are involved with the selling of the synthetic marijuana called spice/K2. They are at least selling something illegal. Suspicious people walk by and exchange money for hand rolled cigarette looking things. Whatever it is looks shady. This is a closer up glimpse of some of the people I have been watching from our window.





Friday, July 29, 2016

Trying Day

Today was the big test day. We took the 7:30 shuttle to the hospital for Jim's appointments. The PetScan was scheduled for 9:15 but he had two appointments beforehand. First was lab work and the second was a meeting with a new nurse practitioner to discuss Educational Survivorship. As we sat in suite 2 waiting for our appointment the time crept closer and closer to 9:15. How were we going to make the PetScan in time? Finally Jim got up and said something to one of the girls behind the desk and she said they would push the scan later. The Educational Survivorship meeting was about general timelines for when to expect different tests and appointments in the future. Finally around 11:00 they called Jim back for the PetScan. The test took over 2 1/2 hours, a lot of the time laying still after he drank a sugary drink and a lot of time waiting to be put in the scanner.

It had been raining all morning and I was chilled sitting in the waiting room. I decided to walk across the street to get a coffee. I finally had my punch card at Padoca Bakery complete which entitled me to a free coffee. I'm glad I was able to cash in on this before we left New York. On my walk back to the hospital I was drawn to the Church of St. Catherine of Siena, the Catholic Church next to the hospital. As I walked inside my eyes had to adjust to the darkness of the sanctuary. Very little lights were on but you could see the candles glowing from the different devotional areas around the church. I walked to the front of the sanctuary and stood in front of the Virgin Mary. As I gazed into her beautiful eyes I could feel the presence of my mother looking back at me. It was if she were telling me she was with me and it would be ok. Maybe mom was the force pulling me into the church all along. Before I left I lit a prayer candle. And on my way out of the church I counted four homeless people crouched over or lying prostrate on the different pews. This church must be a safe haven for them. A place to rest and seek shelter from the heat.

Jimmy finally was done by 1:30 and we walked towards Central Park and took a taxi back to the Hope Lodge. It was worth the $23.00 fare not to wait around another hour for the shuttle. After we got back Shani called to let us know Jim's bacterial swab came back positive for staph. Hopefully a different antibiotic would wipe out this sinus infection once and for all. I walked to CVS to pick up the script.

Around 5:00 I met Lloyd in the lobby and we went to have a drink and talk for awhile. Tomorrow she and her husband were leaving the Hope Lodge and returning to their home in Lafayette, Indiana. There are certain people we meet in life that we have an instant connection with. Someone who speaks our language and shares a kinship with us. It did not matter that Lloyd and I were 13 years apart. I felt that connection with her. She gave me a card with sunflowers on the cover. How did she know they were my favorite flowers? Inside the card was a quote from Ralph Waldo Emerson and it read: "A friend may well be reckoned the masterpiece of nature." I will miss Lloyd and wish her and Steve all the healing and joy there is to behold.