Feels Like Monday

It feels like Monday to me. I lost a day in the week already. Since being in New York it is easy to forget what day of the week it is. Every day is pretty similar, even holidays. The last two nights the Manhattanhenge was supposed to occur. This is an event during which the setting sun aligns with the east-west street grids of Manhattan. This stunning sunset occurs twice a year, on dates evenly spaced around the summer solstice. Of course it cannot be cloudy and that is exactly what is was the past two nights. Sunday night I ventured out with a few people from the Lodge around 8:00. We walked a few streets over in hopes of catching a little sunset but the clouds never parted. Afterwards we walked to a little park and sat down in the night air. The weather was cooler and not bad out. As the darkness fell the lights of the Empire State Building illuminated. I took a picture of Cathy and Kurt.

Yesterday Jim wasn't feeling that great so we stayed inside the Lodge all day. Several residents have been coughing and we heard that something is going around at the Hope Lodge. If you think about it, there are many immunocompromised residents here. All it takes is one to catch something and it can spread like a wildfire. Although Jim wears his gloves and mask most of the time when he is outside of the room he is still vulnerable to infection.

Today was an early day. We caught the 6:30 shuttle to the hospital. Three homeless men were just waking up across the street from the Hope Lodge. I took a picture of them from the shuttle. At the hospital Jimmy had blood work, vitals, met with the NP and then with Dr. Sauter. Since Jim was under the weather they were able to swab him and determine he was infected with the human parainfluenza virus (HPIV). The virus is spread very easy from infected person to others through the air or by touching a surface infected with it. HPIVs can stay in the air for over an hour and on surfaces for a few hours and still infect people. There is no treatment for it so Jim has to let it run its course. While with Dr. Sauter he confirmed that some of Jim's abnormal blood counts were directly related to bone marrow recovery. He actually said Jimmy had "a robust bone marrow recovery" and that the cells in his marrow were "happy" cells. We interpret this as his 29 year old donor cells are happy to be living in Jim's bones and are producing well. After meeting with Sauter Jim had to stay for IV fluids. The fluids help hydrate him and flush his kidneys. His potassium levels are still elevated so its important to drink lots of water and watch foods high in potassium. While he was having treatment I went out to the post office and back to my favorite grocery store on the Upper East Side.

Late afternoon Jim rested and I sat outside on the 6th floor patio. Aside from the noise it was pleasant out. The patio gets afternoon shade and there was a nice breeze blowing. We will have homemade pizzas for dinner tonight. We probably will have the kitchen all to ourselves as there is a big dinner event downstairs with quite the menu prepared by different New York City chefs. We are staying away from group food preparations for now. Bon Appetite !

Mall Walking

Last night when I looked out the window I could see part of the Empire State Building towering above the skyscraper to the right of my view. It looked so beautiful in the night sky. It was glowing red, white and blue in honor of the Memorial Day Weekend. Some of its colors were reflecting off the windows from the adjacent buildings. I couldn't quite capture its impressiveness on camera.

After breakfast Jim and I wanted to walk but it was too darn crowded and hot outside. We decided to put our "sneakers" on and do some mall walking. We went across the street to the Manhattan Mall which is just a dinky little mall with JCPenny's as its wing store. We did circles around and around the top floor which was the least crowded. Only one mile but it felt good to get out. We were probably the youngest mall walkers around. Actually we were the only mall walkers around. We also stopped into Aeropostale where Jim bought two pairs of shorts. The 29 year old donor was channeling him to buy some youthful shorts.

We worked up an appetite from mall walking and had tuna for lunch. The afternoon was spent sitting on the patio reading and enjoying the breeze. Hard to believe but the weather turned a little cooler and there was a nice breeze out. I talked to Cathy and Kurt for a good while. We met them on the transplant floor. I've mentioned them before. Cathy is our age and had a transplant around the same time as Jim. Her daughter is pregnant with their first grandchild and is due within the month. Cathy was telling me how sad she is that she will not be able to be near the grandbaby for the first 6 months of his life and then she has to be very careful after that.

A lot of people are coughing in the Hope Lodge. It's hard to ascertain if it is a cold cough or a cancer cough. Jim has a scratchy throat and we are both on guard. Hopefully it will not develop into something more serious. We have more questions for Dr. Sauter who we will see on Tuesday.

Sweltering Saturday

I was surprised to see Val and Larry in the kitchen this morning. She went against medical instructions and waited for her temperature to break on its own. They did not call the doctors because they knew they would be instructed to go to the Emergency Room and most likely spend the next few days in the hospital. If it were us we would have gone to the ER no matter how resistant Jim would be to the idea. Anything can happen especially within the first 100 days post transplant.

We spent the morning having breakfast in the kitchen then went to the library/quiet room with our coffee and computers. I had my yoga mat and did lots of stretches. I feel so much better on the days I stretch. It's time Jim does some with me. He did buy some dumbbells recently at Kmart and has been doing curls in the room. Neither one of us is used to being so sedentary.

In the early afternoon I walked across the street to JCPenney's and bough two bath towels. The Hope Lodge provides one towel each and they wash them once a week but I was able to snag a really good Memorial Day Sale on two Egyptian cotton towels. Then I went down the street to Jack's. Jack's is like an oversized Dollar Store. It has a little bit of everything but it is always jammed packed with people from all walks of life. It has a culturally diverse clientele. The registers are run by women, most wearing head scarves. They look like they really hate their job. The aisles are crowded as people leave their carts to explore what is behind the refrigerated doors. Michael Jackson's Rock With You song was playing loudly. Several unrelated people were singing and moving to the grove. The man walking in front of me had a Dell computer backpack on yet his pants were literally below his rear end. I don't see what woman would find that attractive and how can that be comfortable? I purchased what I needed and hurried back to the Hope Lodge. It was stifling out. Can it only be May? The air quality and humidity feels more like August.

When I got back to the Lodge I met up with Jimmy who was sitting outside on the 6th floor patio. Lots of residents were out on the patio or sitting around inside. We stayed outside for a bit but there was no breeze and the air was thick. It is a strange feeling to more or less have limited options on where to go on days like today. Walking around outside is unpleasant, especially for Jim because he has to wear a mask and gloves. We can't go to a play, the mall, a museum or restaurant until the doctors give the go ahead which will not be for awhile. We ended up back in the kitchen for a late lunch and I made more homemade cookie dough. Jim helped me chop the nuts and apricots.

Funday Friday

Another good day at the hospital. Jim's electrolytes were in an acceptable range so he did not have to stay for IV hydration or magnesium. Shani, our NP, also had test results from a test they ran on Jim on Tuesday. This particular test monitors the success of Jim's bone marrow transplant by determining the percentage of donor cells in his bone marrow. The report showed 100 percent! This is a very good thing. It means the cells donated by the 29 year old man have now found their way to Jim's bone marrow and have taken over.

When we were done with the hospital we walked by the apartment building I rented prior to moving to the Hope Lodge. I recently received an email to pick up a package delivered there. Harry, my favorite doorman, was working. He calls me Virginia. The package was a false alarm but I'm glad I was able to see Harry again. When I lived at the apartment Harry would ask about Jim every morning on my way to the hospital. He is a sweet, sweet man. After the apartment we went to CVS and the post office. We ended up taking a cab back to the Hope Lodge. The traffic was extra heavy today. Maybe people were getting out of town early for the holiday weekend. I hope so. Whatever it takes to make it less crowded.

I made a nice dinner and an apple raspberry coconut crumble for dessert. Black sock wearing Larry came in to the kitchen tonight and said Val wasn't feeling well. She has been in bed all day sleeping and had a temperature of 101. I told Larry he has to call the doctors and advised him not to give her Tylenol. Larry needs guidance. He is not on top of medical know-how like some of us. Their room is right next to ours so I can't tell if they went to the ER or not. Hopefully all will be ok.

I almost forgot to mention one more thing. My friend Lloyd and I went to dinner last night. There were supposed to be a group of us but for one reason or another everyone else canceled. She is on the floor above me and the two of us decided to still go. Jim found a very nice restaurant for us to go to. It was a wine and chocolate bar and was just a short 5 minute walk from the Lodge. We had a very nice time getting to know each other more. It did us both good to get out for evening and talk.

Shoulder Bumped

Yesterday was low key. We had a reprieve from the hospital. We walked to Trader Joe's on a mission to buy some organic coffee but were unsuccessful. Speaking of coffee, the other day I was in Whole Foods by myself and in the coffee department they had 6 large barrels of different types of whole coffee beans. As I rounded the aisle there was a punkish teenage boy with both arms up to his elbows in one of the tubs of coffee beans. He was playing with the beans as if he were a toddler in a sandbox. I stopped my cart directly in front of him and sternly said "Really?"  "That is DISGUSTING!" He was not embarrassed but he did stop. He mumbled some rude utterance under his breath and laughed it off to his buddies. I stood astonished at what I just saw and looked around to see if anyone else was bothered by it. No one paid attention. I did not buy coffee at Whole Foods, not even in the sealed package.

The past couple of days Jim and I have been a little uneasy. On Monday when he was in for blood work his white blood counts were elevated. He had no signs of infection or graft-versus-host-disease but they ran blood cultures on him anyway. Tuesday he had to go back for more blood work to run 4 in-depth tests to find out what may be causing the elevation. Two of the tests had something to do with detecting cancer cells. It was hard to wait those couple of days wondering if the cancer could possibly have returned. Dr. Sauter was out of town but the NP was in touch with him regularly. Last night Shani, the NP, called to let Jim know the tests showed no malignant cells. What a relief. We are still waiting for one more test to come back. This test will show if Jim's bone marrow is 100% donor cells or not. We expect them to be by now, Day 42.

Last night Jim and I sat out on the patio on the 6th floor. Since it was a nice evening there were a lot of residents outside. We sat with Cathy and Kurt, a couple we met when Jim and Cathy were both patients on the transplant floor. Kurt is one of the caregivers I have been out to dinner with previously. They live in upstate New York and are our age. It was nice talking with them.

Today the weather was oppressive. The National Weather Service issued an air quality alert for today. We went out early to find Jim his coffee beans. We ended up buying some organic beans at Stumptown Coffee Roasters. Jim wore his mask and gloves because anywhere within a half mile radius of the Hope Lodge is packed with people. We passed through the Flatiron district, a neighborhood near the Lodge named for the Flatiron Building. It is a 22-story triangular shaped building considered to one of the groundbreaking skyscrapers. Completed in 1902 it was one of the tallest buildings in New York City. Its name "Flatiron" was due to its resemblance to a cast-iron clothes iron.

On our way back from the coffee shop a woman came out of the drugstore in front of us and vomited on the sidewalk. I practically pushed Jimmy over trying to get around her. What are the chances that would happen on our short 20 minute walk outside? Geez. And then we continued on with people walking everywhere which way. There is no such thing as walking on the right side of the sidewalk or staying to the left. People just walk straight on, most of the time they are texting or looking down at their phones instead of watching where they are going. Jim has started to bump people on purpose if they are not paying attention. I walk around or stay behind Jim as not to get in anyone's way. Today was different. Today a young woman was walking straight at me looking down at her phone oblivious to her whereabouts and that is when I had my first shoulder bump. I deliberately said no more. Jim was proud of me.

The rest of the day we stayed in the Lodge. A group of volunteers from Zurich Insurance Company came to the 6th floor and baked cookies. There were even gluten free/dairy free cookies I could eat. We pigged out.

Day 40

This morning we were on the 7:30 shuttle with stunt man Lou behind the wheel. Jim had blood work to do but that was it for the day. After labs we waited 45 minutes and returned on the 9:00 shuttle. We planned on having a late breakfast when we got back but as I started walking down the hall to the kitchen I was hit with the odor of fried sausage and bacon cooking. It filled the entire hall from one end to the other. I knew Larry was at it again. Larry and Val are our carnivorous next door neighbors. Val is the one I mentioned earlier who has diarrhea of the mouth. Jim can only take about 5 minutes of her before his head begins to hurt. They are a very nice couple and the first people we met when we arrived to the Hope Lodge. Val is recovering from a transplant and poor Larry is a little out of his element in the kitchen. She does not have much of an appetite except for milk, meat, eggs, pancakes and yogurt. Larry on the other hand likes to eat anything and everything. Val says she can never keep leftovers in the refrigerator at home. Larry cooks eggs and bacon for her most mornings but he doesn't use the fan or clean the stove of the splatters of grease when he is done. He has a reddish face and round belly and he always walks around in his shorts and dark socks, no shoes. Val always has a story to tell. She has a house in Maine and he has one on Long Island. They are both divorced and are not married to each other but they live together alternating houses I think. Larry is kind hearted and does his best to take care of his Val. She is a little spit fire sitting back at the table and letting him do everything for her. I waited for them to leave the kitchen then went back in to make brunch for us.

This afternoon we had our first visitor since we have been at the Hope Lodge. Mike and Laura's daughter, Kathryn, was in New York and she was sweet enough to stop by for a visit. We sat out on the terrace on the 6th floor at first until it started to sprinkle. Then we moved into the lounge area. The 6th floor is where guests are entertained. Visitors are not allowed on the residential floors. Kathryn recently graduated from college and she plans on moving to New York in July. It was great catching up with her and we might be seeing her again after she moves up here later in the summer.
That was the highlight of our day. Later in the afternoon I walked to Whole Foods by myself for a couple of things. It started raining on my way home.

Sandy was at the river house today doing a few things to help us out and she noticed there had been a visitor recently. She found two piles of bear scat in the yard near the main house. The animal was after the bird feeder. Look closely at the puncture wounds in the plastic. Oh boy.

A Hearty Walk

I took a break from blogging yesterday. I enjoy blogging. It's cathartic for me. The main reason I write is for myself. It is my journey and my way of documenting that journey is writing and posting pictures. If I relied solely on my memory to reflect on this time in New York I would recall very few things. That's how bad my memory is. Now I have it documented in writing, with pictures to boot. If no one read my blog I would still continue to write. The feedback I have received has been very supportive. So I will continue it. Sometimes I may skip a day or two but I'm in it for the long haul.

Yesterday we took a walk to the Chelsea district. I went into the Chelsea Market and bought some grouper for dinner. There is a fish store there that has every imaginable seafood fare one could want. Jim waited for me in a little park a block from the Market. For dinner I made grouper, quinoa and homemade apricot and pecan oatmeal cookies. Not bad for limited space in a little kitchen.

Today Jim had blood work and met with Shani, the NP. Luckily he did not have to stay for IV fluids. He wanted to try walking back to the Hope Lodge so we took our time and headed out. I had packed lunch since I thought we would be at the hospital most of the day but instead we found a little park overlooking the East River in-between a cluster of very nice apartment buildings. We sat on a bench eating our lunch and watching all the little dogs pass by and the moms/nannies pushing baby strollers. The pigeons got a little annoying as they crept around the bench hoping that a crumb would fall to the ground.

After our picnic in the park we continued our walk, passing Rockefeller Center and St. Patrick's Cathedral. The Cathedral has been on our bucket list of places to visit. We opened a side door and entered the Cathedral. A mass was being held so we were able to sit down for awhile and listen. The church is enormous. Pictures on my smartphone couldn't capture the beauty.

The last leg of our trip was pretty bad. You can only access the Hope Lodge by walking through Times Square and surrounding areas which are really crowded and dirty. Jim had his mask and gloves on and I found myself covering my nose and mouth with my sweater. I have always been a germophobe, but even more so now that I have good reason to be. We made it back safely and logged 4.0 miles for the day. This will be our last trip walking through Times Square. Next time we will take a cab to Central Park and stay in the wide open spaces.

Keep It Boring

Keep It Boring is the phrase Dr. Giralt kept saying to Jim when he was in the hospital. The other transplant doctors who saw Jim after Giralt would say the same thing. It is the weekend so that is what we are doing. We are keeping it boring. There will be no trips to the ER for us. I had a twinge of panic last night. After walking Central Park yesterday and being out in the sunshine Jim was a little wiped and rested for about an hour. When he got up he was warm and I thought "Here we go again" "We overdid it!" but everything was fine.

Today we stayed in the Lodge spending a good bit of time in the kitchen talking to some of the other residents. I did a couple of loads of laundry and organized our room. When living in tight quarters it is easy for things to get messy. We listened as music filtered through our window. It was coming from Madison Square Garden/Penn Station vicinity. We never figured out what was going on there. Occasionally you could hear a person screaming out or yelling about something. As I've mentioned before it literally is crazy down below on the street. The other day Jim and I were standing in front of the building waiting for the shuttle and a woman pushing a granny cart full of "stuff" wheeled down the street in front of us just yelling at the top of her lungs. Then another woman coming from the opposite direction stopped and started telling us the woman screaming used to be a millionaire and she lost her fortune and is not only homeless but insane. This woman talking to us said she was homeless too and continued to walk on. During the same wait for the shuttle a man staggered down the sidewalk in front of us, high as a kite, stopping and scratching his head as if he had mange. At that point Jim and I backed up closer to the Hope Lodge door. Sometimes people lie down in front of the HL door and the security man goes out front and tells them to move along. Then there are the people who decide to stop and smoke a cigarette right under the sign that says American Cancer Society. Geez.

Here are a few pictures I took from our room. I love the copper on the church steeple and on the Gimbel Bridge. That's the Empire State Building peeking out on the other side of the Gimbel Bridge.

A Lovely Day

A beautiful day in the city. The church bells rang promptly at 7:00 and I got up and went to the quiet room (library) to do some yoga. I'm glad no one comes in there when I am stretching. It's nice to have it all to myself. I looked out the window and watched the crowds of people below hustling to work or wherever they were going. When Jim got up we went into the kitchen. It was crowded this morning. We managed to snag the last empty table. There are three and an island with a few barstools. Today was George's last day. His smile was infectious because he was going home. Home to his wife and children. Home to his job. Home to drive his car again after 6 months without it. Home to his life. Like Jimmy, George had a bone marrow transplant. His sister was his donor. He had complications along the way which landed him back in the hospital more than once. Now he is 100+ days out and would walk the 2.8 miles from the hospital to the Hope Lodge. Maybe we should set that as a goal for the future.

Since today was a free day we took the shuttle up to the hospital to walk to Central Park. Before we started the walk we ducked into St. Catherine of Siena next to the hospital and lit two candles, one for Jim and one for a little 18 month old who just went through a bone marrow transplant and is having a tough time of it. After leaving the church we went to the post office and then on to the Park.

Central Park was full of people but we managed to find some less populated trails where Jimmy could take his mask off. We saw a ballerina mime who was so good. She stood motionless on top of a box until money was put in her bucket then she twirled around like a little ballerina who spins around when a music box is opened.

We walked to Belvedere Castle which is an ornamental building with a mock tower sitting on one of the highest points in Central Park. Turtle Pond, a man-made body of water, next to Belvedere Castle is home to five species of turtles who live in the Pond year round. It is said that many of the turtles were pets at one time in city apartments and then released to the Park by their former owners. We saw a lot of Red-Eared Sliders basking in the sun on logs or rocks near the water.

Taking a break in the shade we snacked on dolmas and corn chips. Kind of a strange combination but it was easy to pack and did not have to be kept cold. We passed three different brides on our walk. It must have been difficult for the photographers to take pictures with so many people in the background. We passed two sand volleyball games being played. The various street musicians provided nice entertainment.

We winded our way to the southern entrance to the Park and hailed a cab through Times Square back to the Hope Lodge. Our total walk was 4.0 miles. Jim is doing really well walking. We take breaks and rest along the way but his strength and stamina are impressive. He will sleep well tonight or should I say he is sleeping well.   It was a good day!!!

Me Time

First off I want to clear up for anyone who read yesterday's blog and thought that was a naked picture of Jim with me in the High Line photo. No it is a very lifelike sculpture.


Today Jimmy had blood work and a dermatology appointment. Depending on what his blood work showed would determine if he had to stay for IV fluids. He insisted I take a day for myself and not go with him to the hospital. After breakfast I packed him a lunch and put it in my backpack along with his computer and a couple of water bottles and sent him on his way. We both laughed when I said I felt like I was sending my baby off to kindergarten. For the most part, I have been by his side every step of this journey so it was normal to feel a little twinge of uncertainty when the elevator doors closed.

I decided to walk to the SoHo district. It's about a 45 minute walk towards lower Manhattan but it took me a lot longer as I stopped to smell the roses along the way. I began my walk and was not even a block away from the Hope Lodge when I spotted a familiar face dancing in the street. I don't know his name but he is one of the beggars who sits on the corner and can usually be spotted around Penn Station. Not sure if he is homeless. He is a very colorful character, quite flamboyant and very tidy in appearance. In the early part of the day you can find him dancing during the light changes at the corner of 7th Avenue and 32nd Street. This is his beat. In the afternoon he is usually sitting quietly with a cup for coins, smoking a cigarette or talking to the vendors who line the streets with their $2.00 polos and $5.00 watches for sale.

As I continued to walk my mood went from happy, watching the man dance in the street, to dismal. I rounded the corner and saw the sad remains of the Serbian Orthodox Cathedral of St. Sava. I remember seeing this church on the television recently. On May 1st the cathedral was gutted in a fire hours after its parishioners celebrated Easter Sunday. Luckily the church was empty and no one was injured. The skeletal remains of the 168 year old cathedral was haunting.

I continued walking and came upon Union Square Park. I met a large man who looked like CeeLo Green. He was dressed in a red and white outfit sitting at a table with a red and white chess set challenging passersby to a quick game of chess. In various parks in New York people set up chess boards and clocks and play against others for $5 a game. Sometimes it's $5 to the winner. Other times the person with the board collects the $5 regardless of who wins. The game is called blitz chess and the clocks are set for 5 minutes. I sat down and chatted with Twitty From the City as he called himself. He was a true New Yorker, born and raised in Brooklyn. He was taught chess as a boy and stressed the importance of continuing to teach it to the youth of today.

I continued on, walking through NYU campus and strolling through Bloomingdale's. Next I headed to by Chloe, a favorite vegan restaurant that I have been to twice before. It's actually called by Chloe. I ordered my lunch to go and walked over to Washington Square Park in the heart of Greenwich Village. I chose a bench next to the dog park so I could watch the pups run and play. There were so many shapes and sizes. It made me happy. There was so much going on in the park: NYU graduates dressed in their purple robes, more chess players, street musicians, a unicyclist, sunbathers, picnickers, artists and the man with pigeons sitting on his head and in his lap...quite gross.

After my nice time in the park I walked back to the Hope Lodge arriving about 30 minutes after Jim. He had a good visit at the clinic. His creatinine and potassium levels are starting to come back down so today he did not have to stay for IV fluids and medicine. We will still watch his diet for potassium and he will continue to drink lots of water to flush out the kidneys but it was a nice break to get out of the clinic a couple of hours earlier than usual.

We still had the rest of the afternoon and hung out on the 6th floor for a bit. We also spent time in the kitchen talking with a couple of the other residents on the floor. I'll tell you more about them in a future blog.

Walking the High Line

There is this woman on our floor. She occupies the room right next to ours. Her name is Shirley. I don't like being in the kitchen when she is in there. She gives off bad energy. She enters the room giving very little eye contact, will say hello if you greet her and then she goes about her business with a frown on her face. It is probably that she is a very sad and lonely person so I will try to ignore the feelings I get when I am around her. Maybe she was this way before she got cancer. Maybe not everyone can see the good in their circumstances. But Shirley, who Jim and I referred to as the grumpy lady before we knew her name, must be struggling with a lot. I have never seen her sitting and talking with anyone and no one is staying with her in the room. Most residents on the 11th floor have a partner or caretaker with them. It is mandatory for transplant patients. People come to the Hope Lodge for many different reasons. Some are here for a short time for treatment, whether it be radiation or chemotherapy. Some people are here for a brief follow up visit with their doctor. All in all everyone on our floor is friendly.

Last year at this time Jimmy and I were traveling in our Airstream with Boo staying at Pocomoke River State Park. An important part of recovery is to have a vision of the future and what you see your life as. We look forward to traveling again in the Airstream. Jim also sees a new Ford Pickup truck in his future.

After a very late breakfast we set out for a long walk. It was a little chilly out but the sun was shining. We ended up walking to the High Line, the linear park built on an elevated section of an old railroad line. There were a lot of people walking the High Line but we took our time and walked the entire 1 1/4 mile path. The fake monks were at it again trying to scam people of their money with the false pretense of building a monastery somewhere. Jim and I followed and watch as people amazingly handed over their money. After the High Line we walked to Chelsea Market and I went in to get some fresh shrimp for dinner while Jim avoided the crowds and waited for me outside. The Chelsea Market has the most incredible seafood store. I have never seen so many different kinds of fish and other edible creatures. They also have a stand that sells fresh goat ice cream with tahini toppings. Skye and I discovered it when she was visiting last. Of course I had to get one. When we got back to the Hope Lodge we had walked 3.6 miles. Almost the entire walk was flat and Jim did great.

My shrimp dinner turned out delicious, crusty bread and a bottle of white would have made it even better. The rest of the night was Nationals versus New York Mets on TV.

A Day For Sloan

Today was basically a MSK day. We left for the hospital on the 8:30 shuttle and it was a nonstop testing and waiting and testing and waiting kind of day. At times it can be frustrating when you are scheduled for an 11:30 appointment and they don't take you until 1:30. But then we have to remind ourselves how lucky we are that they ARE taking us. For example there are many people who would like to be patients at MSK but they did not meet the right criteria. I have talked to several people during our time here who told me they had to pull strings to be accepted as a patient.

Jimmy started out the morning having what is called a Pentamidine treatment. He is given a nebulizer treatment where he inhales a fine mist of medication into the lungs. It takes 20-30 minutes. Transplant patients are extremely susceptible to developing a type of pneumonia called PCP, pneumocystis pneumonia. Left untreated PCP can be fatal in a weakened immune systems. Back in the 80's when I worked on the AIDS floor at George Washington University Hospital, PCP was the number one killer of AIDS patients. Medications like Pentamidine has significantly made a difference in the prevention and treatment of PCP. It is now given routinely every month to transplant patients until they are able to take an oral form of the medication.

When we were done with all Jim's appointments and treatments we decided to skip the hour wait for the shuttle and took a cab back to the Hope Lodge. I made dinner and we turned in early. Who knew sitting around all day could be so tiring.

Yoga and Then More Yoga

I got up before Jim this morning and went into the library/reading room with my yoga mat and did some yoga stretches. My body felt stiff and creaky. I have all this time on my hands so there is no excuse for me not to limber up with a few poses. Today was a free day.  No rushing to catch the shuttle and hang around the hospital for hours. We were free to sleep in, free to wait for the crowd to die down in the kitchen before we went in to have breakfast and free to go to the grocery store together on our own schedule. The grocery store...ugh. The place I had my melt down. I've been holding it together pretty well during this lengthy stay here in New York but today I lightened up on my control. Jim and I walked to Trader Joe's this afternoon. At first it did not look too crowded so Jim came in with me. Remember he has to stay away from crowds and he wears his gloves and mask around other people. We were trying to buy a few things he can eat on this low potassium diet. After a few aisles it became wall to wall people. The line for the checkout winded up and down several aisles making it difficult to look at items on those shelves. I was trying to find where things were and reading labels for potassium levels all the while being in peoples way. It was crowded and I felt claustrophobic. Finally when I went to check out a woman pushed her cart in front of me and I then ran into the back of her shoe. I followed her to her line and apologized and she looked at me with disgust and said "Yea" with a doubtful tone. As if I ran into her on purpose. The exit to the store was narrow and crowded, I still had to put my sweater on and we had several bags of groceries so I just lost it in the little exit area. I shouldn't have even apologized. It seems I am always saying I'm sorry when walking on the street if my path crosses with another person. Most people here just look out for themselves. I rarely hear anyone else say "I'm sorry" "Pardon me" or "Excuse me". Were they not taught manners?

Now that I got that off my chest I feel better. When we got back from our Trader Joe experience I made lunch and went down to the main floor to take advantage of the 3:00 yoga class being offered. There were only 2 of us taking the class and it was difficult but I needed to breathe some more and I'm glad I went.



Jim and I spent the later part of the afternoon in the library on our floor. It gets us out of our bedroom and it is a cozy little room. There are three chairs, two bookcases full of books to borrow and a little table and reading light. That's it. It is a nice change of scenery. We sat and read and drank green tea together. I know...how cute. At 6:00 my focus turned to, as Edgar Allan Poe described in his poem The Bells, "the tintinnabulation that so musically wells from the bells, bells, bells, bells, bells, bells, bells".

Easy Like Sunday Morning

Sunday morning and we were up by 7:30. The light and noise starts to filter in around 5:30. The church bells ring in the morning at 7:00. We had a leisurely breakfast and caught the 9:30 shuttle to the hospital. We were the only ones on the shuttle until Lloyd got on. I've mention her previously. Her husband had to be readmitted a few days ago and is in the ICU now. Lloyd seemed exhausted and down. Her husband has multiple problems. We talked with her the entire ride to MSK.

Today Jim's blood work showed his creatinine level was even higher than on Friday. His potassium level is elevated too. They gave him IV fluids so it would help flush his kidneys. He also had IV magnesium. We were only in clinic for 3 hours today so it didn't seem that bad.

After returning to the Hope Lodge we went to the kitchen for a little lunch. Val and Larry are another couple on the floor. Val drives Jimmy crazy. She has diarrhea of the mouth. She will talk about anything and everything. Jim couldn't get out of the kitchen fast enough. He went back to the room to watch golf on the TV.

My challenge is with Jimmy's diet. His potassium levels keep rising which can be dangerous. I now have to prepare foods low in potassium. This is a difficult feat because Jim is also on a low microbial diet. Good thing I have lots of time on my hands to research what he can and cannot eat.

Happy One Month Birthday

It has been exactly one month since Jim received the generous gift of stem cells from an anonymous 29 year old man. In celebration we walked to Pizza Suprema located on the other side of Madison Square Garden. I went inside while Jimmy waited out front with his mask and gloves on. I wanted to make sure they would make the pizza and not slice it before packaging it into the box. These are guidelines the hospital gives you. No slices, you have to buy the whole pie.  No cutting or using any of the spices from the counter. I made sure I bought Jim his own oregano and red crushed peppers. He ordered the famous signature pizza pie and ate three slices. I froze the remainder so I will be able to take them out and reheat them individually. He was a happy baby, only a month old.

Today was a good day!

Pincushion

Pincushion - a small cushion into which pins are stuck for convenient storage. That is what Jim felt like today. When we first arrived to the hospital for his appointment he went for the usual blood work. The man called him back and started to collect one of seven vials of blood. Shortly after the first vial the man turned and accidentally yanked the tubing from Jim's arm and the needle came out. Jim then had to be stuck again to finish the collection. Next we met with Shani, the NP. She asked all the usual questions to make sure there were no problems arising. She examined Jim and reviewed some of his blood work. Because he still had elevated creatinine levels which indicates the kidneys are not working up to par, Jim needed to have more IV fluids to flush them. As I mentioned previously this is not an uncommon occurrence for transplant patients. It just meant another stick and he would have to spend an additional 2 hours in the treatment room receiving IV fluids. The treatment nurse stuck him twice and was unsuccessful getting an IV in. She called another nurse who tried once and was unsuccessful. Finally the pro came in and on Jim's 6th stick of the day she was able to start an IV. Hence my reference to pincushion.

While Jim was in the treatment room Dr. Sauter came in to check on him. He stated he was pleased with Jimmy's progress so far. He may have a set back here and there but that is to be expected. He was not overly concerned with some of the abnormal lab values. They are monitored very carefully and should go back to normal when certain medications are reduced. He wants Jim to go in Sunday for more blood work and he will see him next Tuesday.

While Jim was having treatment I met Lloyd, Debra and Robert at Le Pain for lunch. They are the folks I made friends with on the transplant floor. It was raining out and I got back to the hospital just as Jim was finishing up. We still had to hang around over an hour to wait for the shuttle back to the Hope Lodge.

After dinner we took a walk out into the scary nightlife around Penn Station. I honestly wish I could describe or capture on film what we see every time we venture outside the Hope Lodge. Wasted drunk or drugged up people on every corner. Some homeless looking, some not. People sleeping standing up. A man cursing at a taxi cab driver, both of them standing outside the vehicle. We watched a NYPD tow truck back up to an illegally parked car and hook him up. He also broke into the vehicle to put it in neutral, all the while the horn was going off. We didn't stay out long but we never run out of interesting things to look at. The Empire State Building looked pretty towering over the tall buildings surrounding us.

Now we are sitting in our room with the windows open and we can still hear the sounds of the scary area below. Buses running, cars honking, sirens blaring, people yelling, HVAC units blowing. What I don't hear are dogs barking, children playing, birds chirping, water flowing or lawn mowers running. It's a different world in NYC.

              

Free Day

Ahh to sleep in and not have to rush to catch the shuttle. Jim's cancer diagnosis has opened our eyes to the simple pleasures in life. That is a silver lining by the way. We got up leisurely and had breakfast. Warm muesli cereal and cantaloupe. Jimmy is on a very strict diet so I really have to think before I put a plate of food in front of him. He can have very few raw fruits and vegetables. Cantaloupe is one fruit he can have. First I have to thoroughly wash it with soap and water (in my case Shaklee cleaner) then peel and slice it. I have to be careful no bacteria or fungus is introduced into the fruit by slicing it dirty.

At 12:00 I took advantage of an hour-long private session of Jin Shin Jyutsu. It is an ancient Japanese Healing Art that harmonizes the body's energy. Similar to acupuncture and acupressure it utilizes a form of light touch on 26 points on the body. Jin Shin Jyutsu is used to assist with the physical side effects from surgery, chemotherapy, and radiation, while decreasing stress and enhancing a sense of emotional well being. Jimmy did not want to try it so I signed up to see what it was all about. The practitioner was a homeopathic nurse and the entire experience was relaxing and informative. She told me stories of how this ancient art form has helped many of her clients.


Later in the afternoon I went across the street to JCPenney's to buy a mattress pad and a pot and pan. The mattress pad on our bed is plasticky and uncomfortable. The reason I purchased a pot and pan is so I don't have to worry about other people using it and not cleaning it properly. The ones on the floor are pretty scratched up and should be replaced.

I finally organized the room in a nice orderly manner. We rearranged a couple of pieces of furniture so the room flows better. The past two nights we have had a mosquito flying around. On several occasions I have been close to killing it but missed each time. I find it very interesting that it hasn't been bothering Jimmy. He has always been a magnet for mosquitos. Maybe they don't like his new blood. Anyway I finally got the little devil and it made quite a mess on the closet wall. It was full of someone's blood...ew!

Not much else happening on the Hope Lodge front. We have met a few of the other residents on the floor. Everyone has their own story to tell. We are all in the same boat.

Released, Set Free, Allowed to Leave, Liberated

This morning on the shuttle to the hospital I saw Sandy. Jim and I met him and his wife previously when we were at the Hope Lodge in January. We had a very nice conversation the whole way to MSK. He has been battling MDS, which is what Robin Roberts had. He is scheduled to be admitted for transplant in June. He said he is looking forward to transplant and feels safest when he is at Memorial Sloan Kettering. I told him he has a really good attitude and he said it wasn't always that way. Four years ago his 30 year old daughter died un-expectantly leaving three small girls behind. Sandy said if he could get through that then he could get through anything.

Dana, the nurse practitioner, was in Jim's room when I arrived. The plan was to discharge him and monitor his blood values at the clinic. He can't wait to be able to sleep in the comfortable bed at the Hope Lodge. We had to laugh today. There is not one ounce of privacy in the hospital. Anyone who has ever been hospitalized knows that. The minute Jim went into the bathroom to shower the housekeeper came back in because she forgot to empty the bathroom trash. Within two minutes of her interruption the little Iranian newspaper man knocked on the door "newspaper, newspaper". It sounded like the "cheeseburger, cheeseburger" skit from Saturday Night Live.

Jim was finally discharged a little after 1:00. The shuttle leaves at 1:15 and 2:45. We really wanted to make the 1:15 shuttle and the nurse was going to call for a wheelchair to take Jim down to the first floor. We were like "He can walk". She was concerned because we had a lot of bags but we managed and hurried down to the shuttle just in the nick of time. WHEW!

After we resettled in the room we took a 2 mile walk within the vicinity of Madison Square Garden/Penn Station. I never stop being amazed at all the different people we pass. There are so many colorful characters roaming the streets. Jim was wearing his mask and gloves and honestly I should have too. We had a very light dinner and retired early. I think we will both sleep well tonight!

As Jim Says "View From Prison"

I was up and on the shuttle by 7:00. Lou was the driver. There are three consistent drivers who rotate the commute from Hope Lodge to the hospital. Lou, a short, stout Italian man, in his late 40’s has had many careers. The one he is known the best for by the riders of the shuttle is being a movie stunt car driver in the 80’s. He will gladly show pictures of himself with Johnny Depp if you start talking to him. He still drives like a stunt driver flying down the streets of New York with classic rock playing loudly throughout the shuttle. Don’t get me wrong. Lou is a very nice compassionate man but playing loud rock music and racing along the streets of New York while passengers, many whom do not feel well, bump and sway in their seats does not seem right to me.

Jim was up in the chair when I arrived which made me happy. I brought my overnight oats and we had breakfast together. When the team came in they said Jim could be discharged. It was a short lived joy because within an hour they came back in and recommended he stay another night. Some of his liver and kidney levels were a little high for their liking. They thought one more day of fluids and monitoring was best. Another camper who is not happy.

   

The good news is he tested negative for the viral infection they thought he might have. They are uncertain where his infection stems from. The massive doses of IV antibiotics he has had since Friday should take care of the infection. Today they switched his antibiotic to pill form.

Before lunch we did 7 laps around the floor and walked over to the Resource Room and sat out on the patio for a bit.  That's where Jim got the idea of "A View From Prison". I'm glad he still has his humor. We had a lunch spread of stuffed grape leaves, hummus and chips. He doesn’t want to eat the hospital food if I can bring an alternative. 

I left on the 4:15 shuttle to head back. Laundry needs to be done and the laundry room closes at 6:30. Malcolm was the shuttle driver home. He is an overweight black man who whistles off key to the music playing unless he is talking on his cell phone. He also likes to yell out of his window at stop lights in a friendly manner to other people. I assume he knows them. On the way home he decided to drive along the outskirts of Central Park and through Times Square. The shuttle doesn't normally take this route. I purposely put my glasses back on so I could partake in the people watching. It never gets boring looking out the window.