Wednesday and Thursday

April 28th- Wednesday
I saw an unsettling site on the way to the hospital yesterday morning. As I rounded the corner on York Avenue and was getting ready to enter the main entrance I saw a man pushing an IV pole similar to Jimmy's. He was outside the hospital in his gown and he was lighting a cigarette. I almost pulled out my cell phone and took a picture. Every patient at Memorial Sloan Kettering is a cancer patient. This man is a cancer patient. Amazing! Later when I was telling Jimmy the story his nursing assistant was in the room making his bed. She told us a story of a very educated professor and author of many books who was a patient on oxygen. This professor was caught smoking pot in his ICU room and they had to have security search the room. Finally they found the marijuana on his body, in his underwear. The nurse assistant said sometimes smoking is the only comfort a patient has. Just don't blow up the rest of the floor by smoking while on oxygen.

Jim was already sitting on the couch, breakfast ordered and he was on his computer when I arrived to his room What a pleasant surprise to see him up an at 'em already. I had to leave before the doctors came in because three of my friends were coming to visit. I went back to the apartment by noon to waited for their arrival. Jane, Laura and Kay took the VaMoose bus from Lorton, VA to Penn Station and then took an uber to the apartment. It was so great to see them. After settling in I took them to Pizza Park where they got pizza and we went and ate lunch in the park across from MSK. The day was a little chilly but the sun was out and the sky was blue.








We walked to Central Park and visited the Alice in Wonderland Statue. Lots of children were climbing on it. We saw remote controlled sailboats gliding on the boat pond. It is at this spot that Stuart Little, the storybook mouse in E.B. White's story, sailed his fictional sailboat to victory. There were lots of people and dogs at the park. Afterwards we stopped by Room 831 to say hello to Jimmy. He was very happy to see "the girls".

After our visit with Jim we went back to the apartment to relax and freshen up until dinner. I made reservations at Rosa Mexicano's for 7:30. It was only a half mile walk but by then it was chilly out. Dinner was delicious. We took our time and had lots of laughs. It was refreshing for me to get out and socialize, laugh and feel normal again. I know Jim longs to do that too and will in good time.

April 28th -Thursday
The girls left by 11:00 to make it back to Penn Station in time for the bus ride home. Right after they left I walked to the hospital. Jim was continuing to have a good day. His white blood counts are 0.5. He is officially ENGRAFTING!! That means his donor cells have found their way to his bone marrow and they are beginning to produce baby stem cells, the first which have grown into white blood cells. Today marks two weeks since he received his transplant. If he continues to do well Dr. van den Brink said there is a chance he will be discharged to the Hope Lodge next week.

Woke Up On A Groovy Tuesday

Jimmy's room was freezing when I arrived this morning. The temperature read 66 degrees. He was still in bed with the covers pulled up to his chin. Can't blame him. Normally I am warm in the room but not today. The nurse said they were working on the vents or something like that. It remained chilly all day. After breakfast the occupational therapist, Michelle, came in to work with Jim on stretches. She showed us some chair yoga moves which I participated in too. Both of us can benefit from stretching and breathing, especially Jimmy. The stretches will help to alleviate some of the back soreness he is experiencing. One of the reasons his back is hurting is it can indicate the beginning of Engraftment.
Engraftment is when the new blood-forming cells start to grow and make healthy blood stem cells. It is very possible that today may be the first day of seeing some growth. Jimmy's white blood cells are 0.2. A very small number but larger than 0.1.

When Dr. van den Brink came in this morning he performed the usual assessment of Jim. The only difference in Jim's response to "how are you doing?" was Jim told van den Brink about the one sore he had in his mouth. Van den Brinks response was "Yes!" in a joking manner. He told Jim all this time he has had nothing to chart about when it came to Jim's condition. We all had a little laugh. Van den Brink reiterated how well Jim's progress is so far and that it looks like the cells are getting ready to grow. Jim's hemoglobin level fell below 7.0 today so they gave him a unit of blood.





Before lunch we had a very special visitor. His name is Jack and he is a bed bug detecting dog. A few years ago New York City had a bad problem with bed bugs. MSK has this little fellow working for them. He works one area or one floor a day. Jack is only 9 months old.



After Jack's visit I went back to the apartment to wash some clothes and tidy things up. Tomorrow a few girlfriends (Laura, Jane & Kay) are coming up on the bus for the day. They will spend the night and go back the next day. The VaMoose bus makes it so easy to get to New York and it leaves from Lorton, which is close to home.
Last night while I was watching TV I heard a bang as if something fell off the counter or inside the cabinet. I got up and walked around the apartment to see what it was but never found anything. I didn't think anymore about it. Well...when I was cleaning today I went to put something in the pantry closet next to the kitchen. I was shocked to find this:

A couple of weeks ago I bought some cinnamon rolls at Whole Foods to make for Jim. When I got home I discovered they were expired so I put them on the shelf to return to the store. Not having been refrigerated and the closet was warm I guess the yeast got the best of them and they exploded. It was a mess. The colorful throw pillows were in the closet because they are feather filled and I am allergic to feathers so when I moved into the apartment I banished them to the closet. The cinnamon sugar was everywhere. Luckily it only spilled on one of the pillows and I was able to clean it with cold water. I had to laugh. Can't sweat the small stuff.

On the way back to the hospital I visited the Catholic Church on the corner to have a moment. It is quiet, beautiful and tranquil inside. I lit a candle for Jim. I only had a dollar on me so it was one of the tiny candle. Next time I'll bring more money.

Expensive New York City

Last night I read an article in the real estate section of The New York Times. It was talking about a transaction that was the most expensive closed sale of the week. Financier Bennett LeBow paid $44, 833,408.00 for an apartment in 432 Park Avenue. Yes I said 44 million! I can see that building when I look out the apartment window. 432 Park Avenue is the tallest residential tower in the Western Hemisphere and the second tallest building in New York City. It was just completed in December. I am amazed at the wealth that exist in the city. Yesterday when I was walking to lunch I took a picture of a fancy looking race car. After researching it I discovered it was a Pagani, one of the most expensive cars in the world. They vary in price but according to Wikipedia they average 2.3 million dollars. WHAT???

 432 Park Avenue is obvious the tall one in the picture.

Today was another busy day in Room 831. Most everything happened before lunch. The NP came in to assess Jimmy and he is doing remarkable still. He has one spot in his mouth they will keep a look at but most likely it's a blood blister from his low platelet count. The doc came in and he was able to shower and have housekeeping in all before noon. Housekeeping comes in every day to swiff and mop his room and thoroughly clean his bathroom. While showering the nurses aide changes his sheets. He has to have his bed changed each day to minimize any germs. I think the highlight of his day was when Denise from The Integrative Medicine Department came in and gave Jimmy a very relaxing foot massage. His back has been sore but because his platelets were so low they could only massage his feet. 

Midday I took a walk to the post office. This is the time of day when I see the most dogs. Mostly dog walkers taking their dogs on a quick trip around the block. I stopped and talked to an older couple with two dogs. The bulldog, Roxy, was only 9 months and didn't want her picture taken. She was too busy trying to go face to face with me. She was big for 9 months and so cute. When I got back to the apartment the bellman asked about Jim. Harry is the morning bellman. He is so friendly and asks me everyday how Jim is doing. Today as I was getting into the elevator he told me he lit a candle for him yesterday. Harry is a sweetheart.

This afternoon Jim got a bag of platelets. Anytime they are below 10 they will give him a bag. Today his levels were 8. Tonight will be his last dose of the very powerful Methotrexate drug which helps prevent his body from rejecting the new cells. This has been a harsh drug on the system and it has bad side effects. Hopefully in a day or two we will start to see his counts go up. His white blood cells are 0.1 and when that number starts to increase is an indication his donor cells are starting to take. Bring on the new cells.

Stonehenge 65

The apartment building I am renting is Stonehenge 65. As I mentioned in a previous post I am a short 10 minute walk to the hospital. The rent is incredibly high for two reasons: Upper East Side of Manhattan and short term stay. We are extremely lucky to be able to afford it. You would think that I am staying in some luxurious area but I will give you an insight to my immediate surroundings. It is hard to hide the trash collected in NYC. At night the building superintendents gather the trash and bring it to the curb. It is a sight to behold on trash pick up days. Sometimes I will be walking to run an errand and for blocks and blocks I see nothing but bags of trash lining the street.  The building on the corner of my street and the building directly across the street are vacant. The outside walls are covered in graffiti. Sometime homeless men sit on the corner begging for money or they lay passed out against the vacant building. Although it looks scary, I feel safe walking alone even at night. There are always people and cars around.

Jimmy was still in bed when I arrived to his room. He said he actually slept fairly well. His back is starting to bother him. It most likely is due to lack of mobility because he can only walk around in the room. There is a chance it is a side effect of the Neupogen shot he receives every day. The NP brought in some warm packs for him. He is really good about staying out of the bed and not sitting too long in one place. He will stand or alternate between chair and couch. You can always find him sitting on the couch between 3-4 in the afternoon. The sun is at its strongest then, supplying the couch with light and warmth.

Around 1:00 today Jimmy was getting ready to have a shower and then order something to eat. I decided to take a walk and treat myself to lunch. There is a vegan restaurant a short 20 minute walk from the hospital called Candle Cafe. I walked there and sat at a table for one. First I ordered a Flu & Cold Fighter juice. It was ginger, orange, grapefruit, carrot and lemon. I then had gluten free pancakes with fresh berries, almond whip cream and lemongrass-maple syrup. This restaurant is right up my alley. Again it is vegan so I didn't have to ask about milk, butter or egg ingredients and the food is DELICIOUS!

Being Sunday there was plenty of sports on television to occupy Jim's time. He watched the Caps beat the Flyers and now there is basketball. We didn't have as many interruptions today. Of course the team came in for a quick approval of how well Jim is doing but being Sunday there were fewer disturbances. He now has 10 days behind him since transplant. Another X on the calendar.

Day +9

Last night Jimmy and I had a sleepover. He had a lot of drugs and with the new hallucinatory medication they started we both thought I should stay. Lights were out by 10:30 just after the Caps lost. Lucky for me there is a couch in the room so I made myself comfortable. As comfortable as you can be wearing latex free gloves and a mask.

Poor Jim doesn't get much rest. The nurse came in at 11:00 for meds and vitals, then again around 1:00, at 5:00 for blood work, then again at 6:00 for vitals and to weigh him. On top of these interruptions the pump will decide to beep stating "air in the line". It happens a lot. You have to call the front desk and they will notify the nurse.

Here is a picture of me all snuggled on the couch at bedtime.  In the middle of the night I took the picture of Tad, Jim's IV pole. It was lit up like a Christmas tree or an alien space craft trying to land. Good thing Jim did not have any hallucinations last night or the IV pole could really mess with his mind.

Earlier in the night we had a visit from Dr. Sauter. He told Jim he had the VIP room. He said this was Robin Robert's room when she was her for her transplant. That is good Karma!

This morning I went back to the apartment and showered and made breakfast. My daily routine was off a bit because I stayed through the night. A rainy morning turned into a beautiful sunny afternoon. Before sunset I walked around and took some pictures. Jimmy is still doing remarkably well. Dr. van den Brink actually joked with him today when he did rounds. He said "are you sure you had a transplant?" As I mentioned before, the nurses fight over who gets to have him as their patient. He continues to keep it boring.

Keep Chugging Along

I saw this quote on Instagram a couple of months ago and liked it. It can apply to almost any situation whether it be a sickness, bad relationship or unsatisfactory job. All I know is Jimmy and I are looking forward to retirement in the near future and exploring the country in our Airstream. It's important to have goals and visions for the future.

Last night I went back to the apartment earlier than usual. I was determined not to just sit on the couch and chill like I have been. Instead I cooked dinner for today, did two loads of laundry and started going through all of our things to see what I could send home. I really have to start lightening our load so it will be easier for me to move out when it is time. Jim won't be able to help. As I mentioned in the past we have accumulated a lot of stuff over the past 4 months. This was our load moving into the apartment.

Today Jimmy received a unit of red blood cells and a unit of platelets. It is pretty standard to give transplant patients supplemental blood as needed. His counts are expected to drop dangerously low and they will continue to supplement him until the new cells begin to grow. The blood Jim receives has been treated with radiation to prevent something called Transfusion-Associated Graft-versus Host Disease. The radiation kills off any white blood cells that remain in the donated blood after it has been filtered. When he is discharged from the hospital it is recommended he wear an alert bracelet with the warning that he can only be treated with irradiated blood. If he were to have an accident and was given blood that was not irradiated it could be fatal.

Yesterday he started a daily shot called Neupogen. This will help his white blood cells mature faster. He will get the shots everyday until his white counts gets to a certain level.
They also changed one of Jim's medications. It is an anti-fungal which they switched to a different type. One of the common side effects of the new drug is weird dreams and possible hallucinations for a couple of nights. Jimmy said he did experience disturbing, strange dreams last night. I'm glad the nursing staff gave him heads up. In a day or two they will reduce the dose of this drug so hopefully the side effects will go away.

I had to go to Staples today to print something and this little guy was tied up near the street. He seemed very distressed and was on point looking for his master. So ugly but yet so cute.

I went to the post office and am having trouble getting all my bills forwarded. The Washington Post cancelled our subscription because I didn't pay the last few bills. I never got them. Jim likes to read the Post online. Who knows what other bills I'm not receiving?

As I walked back to the apartment midday many people stood outside their place of employment taking a cigarette break. Sometimes I feel like I have ingested tobacco smoke for several blocks. It's disgusting. Tonight will be a full moon. Too bad the sky will be covered with clouds. I would love to get a picture. Guess the ER will be crazy tonight although I hear that is just a myth.

"I never meant to cause you any sorrow / I never meant to cause you any pain / I only wanted to one time to see you laughing / I only wanted to see you / Laughing in the purple rain"             RIP Prince. You were very talented.

One Week Down

Another beautiful morning in New York City. I pass several street vendors on my way to the hospital. There is a fruit vendor directly in front of the main entrance. I spent a couple of hours this morning on the computer researching street vendors. There are as many as 20,000 street vendors in the city - hot dog vendors, flower vendors, t-shirt vendors, street artists, fancy food trucks and more. They are small businesspeople struggling to make a living. Most are immigrants. They work very long hours in all kinds of weather and do not make a lot of money by the end of the day. I have debated about buying produce from theses carts. When it comes to the dirty dozen, I stick to organic. But when we are talking oranges, lemons, bananas, mangos and avocados I choose the fruit carts. Yesterday I bought a head of cauliflower, a mango and an avocado and it only cost me $4.00.

Today Jimmy's blood counts dropped a little lower. I don't know how white blood cells can be less than zero but they were. His platelets are hovering at 11. Tomorrow they plan on giving him a platelet transfusion. He is cold most of the time. I might have to have some winter clothes sent back up here to keep him warm when we move to the Hope Lodge. When your red blood cells are below normal it is harder to stay warm. I wish I could lend him my internal furnace that I live with.

Today is Day +7, a full week since Jim's transplant. I think all the chemo and medicines they have been pumping into his system has started to affect his appearance.
What do you think?

Hump Day, I Guess

Today we learned a little more about Dr. van den Brink, the transplant doctor who will be following Jim's care for the next two weeks. We met him briefly yesterday. He happens to be the head of the Division of Hematologic Oncology here at MSK. We thought Dr. Giralt was the head guy but van den Brink is Dr. Giralt's and Dr. Horwitz's boss. He heads up the entire division. He is a physician-scientist and runs a lab here doing research on improving the outcome for transplant patients. Wow...we are doubly lucky to have him following Jim's case.  Van den Brink is an avid runner. On Monday he participated in the Boston Marathon. He runs in the New York City Marathon too. The nurses told us when he returns after a marathon he goes straight to the pediatric oncology floor and gives his medal to the kids.

Today is +6, the day Jim should be at his worst. Luckily he doesn't feel it. His platelet count is 17. If it drops below 10 then he will have to have a transfusion, which is not uncommon. Platelets help your blood clot so it's the simplest things like brushing your teeth that can be dangerous. He has to make sure he uses the hospital toothbrush and be extremely gentle. Even eating certain foods like chips or popcorn can cause the gums to bleed and open up the mouth to infection. He is being very diligent on rinsing his mouth frequently to prevent or minimize mouth sores.

The social worker, Chelsea, visited this afternoon. She is very sweet. She is responsible for making the arrangements at the Hope Lodge for us after discharge. Unfortunately we will not know when discharge will be until a few days before it happens. I'm getting ahead of myself thinking about discharge. There is much to be done before we get to that point. Jim rested for 2 hours between 4:30 and 6:30. It's hard to get up when you are comfy and warm under the covers. Sometimes his room gets a little drafty plus he gets chilled more often because of his low blood counts. We watched the Nightly News together and then he ordered dinner. He gets a pass on the exercising today. Can't blame him. If I don't exercise earlier in the day I get pretty lazy too.

Counts Are Bottoming Out

Morning came early today. I was wide awake, rested and out of bed around 6:30. I like to watch a little of The Today Show before I leave for the hospital. The opposite of me, Jim does not like the television on in the morning.
I forgot to post the pictures of flowers I took yesterday. They were all in front of a particular apartment building when I was out walking. Quite a spectacular display.

When I arrived to room 831 Jim was still in bed and the room was dark. I pulled the blinds up to let the sunshine in. Jim wanted to wait to get up after the NP came in. Eventually he was up, ordered breakfast and started the day. He still does not feel as fatigued as we expected. His white blood cell count is 0.2 (normal range is 4-11). This is practically zero so that means he is very vulnerable to infection. Platelets and red blood cells are plummeting fast. A new transplant doctor started his rounds today, Dr. van den Brink. He actually ran the Boston marathon yesterday. Calm demeanor and to the point kind of guy but we liked him. He was pleased with Jim's progress so far.

Around noon I went back to have lunch in the apartment then I walked 25 minutes to my hair appointment. I have been needing a cut and found a salon with good reviews fairly close by. Haircuts in the city are twice what I pay back home. I was pleased with the results.

While I was gone Alfred came by to encourage Jimmy to do physical therapy exercises. Alfred is the retired attorney I spoke about previously. Jim said he is 83 years old. He was showing Jim different stretching exercises to do. Sorry I missed him. We both took naps before dinner. I lay on the couch. It gets very boring sitting around. Even though I have plenty of time to read and go on the computer it still is tiring. I see what Jim means about constant interruptions. There is always someone coming in the room.

Later in the evening Jim did exercises. There is a step board and a mini exercise bike in his room. He also uses resistant bands. He did a great job of exercising tonight. It is very easy to lose muscle mass when confined to a room for a couple of weeks, especially if one doesn't feel well. It is also easy to get pneumonia if you aren't expanding your lungs by breathing deeply. All the little things we take for granted.

Day +4

I woke at 3:30 this morning. It seems I never sleep through the night in the apartment. I wondered if Jim was awake and if I was channeling him. I opened the blinds to see the lights of the night and was surprised to see the moon in the sky.

On my way to the hospital many elementary school children were walking to school. When I pass a school I barely recognize it is a school. It's not like in Virginia where the building is by itself with grass and a playground surrounding it. Some of the schools don't even look like there is a place for recess. Do kids still have recess?

Jimmy was a little more tired today.  He said he has been awake off and on since 5:00. It is hard for him to sleep more than three or four hours consistently without being interrupted. The nurse comes in at 5:00 to draw his blood. Then between 5 and 6 the nursing assistant comes in to take his vitals and he has to get out of bed to be weighed. The reason they do all this so early is so the doctors have the results by the time they do rounds.

By noon Jim was getting ready to shower and the occupational specialist was visiting him afterwards so I waked to the post office and took the long way back to the apartment. I had two loads of laundry to do so I piled them in my granny cart and went to take the service elevator down to the basement. Unfortunately it was in use for deliveries so that makes it tricky to get to the basement. I ended up taking the regular elevator to the 2nd floor then carried the cart (which is heavy) down the stairs and I ended up in a outside hallway. I finally found another stairwell and two men were walking in front of me. One offered to carry my cart to the basement. There are a few nice souls in New York. This guy's momma taught him right.

Back at Jimmy's room he had just finished a late lunch/early dinner. Around 3:30 the sun comes through the windows warming the room nicely. I have been researching hair dressers close by and finally booked an appointment for tomorrow. $75.00 for just a haircut!!! I need it colored but will wait to see if I like the place first.

At 5:30 I went to dinner with four other caretakers to a local pizzeria close to the hospital. It was nice to learn the stories of others. We might try to get together weekly while we are still in the hospital. Two of the four people will also be going to the Hope Lodge. When I got back to the room Jim was watching the Caps game. So far so good.

U Can't Touch This

On my way to the hospital this morning I was delighted in the fact that very few people were on the road or walking down the street. I had Manhattan to myself. I could look up at the sky and tall buildings without having to worry about running into someone. I even stopped in the middle of the street to get one of these pictures.
Sunday, truly a day of rest.

Tulips and pansies are planted along one of the hospital's side street and in containers in front of the main entrance. Usually I enter a side door to get to the elevators. This is the shortest way to get to the M elevators which bring me to Jim's room. Now with the nicer weather I will start taking the long way and enter through the main entrance to the hospital. That will cut down on the number of people I come in contact with. I am becoming more conscious of picking up a bug and getting sick now that Jimmy is entering his most vulnerable stage.

As I entered the main hospital I saw the newspaper man. I have seen him before. He sits in the main entrance selling three different types of newspapers. On Sundays, he visits the floor knocking on the doors "newspaper, newspaper" with a very heavy accent. I bought a New York Times for Jim.

He was awake sitting up in bed with Tad beeping away. Said he called the nurse 10 minutes ago but sometimes they get busy and require another buzzing.
Dr. Hanash and Mary, the NP visited reassuring us once again that just because Jim's blood counts have not bottomed out doesn't mean the chemo wasn't working. I don't care how many times you ask a question, keep asking until you understand the answer and feel comfortable with it. Today I think we finally get it. Dr. Hanash said there are three types of patients: those that are doing great and then all of a sudden hit a bump in the road, those that have a hard time the entire way, and lastly those that sail smoothly throughout the process. After they left the room we looked at each other and said  "sail smoothly". Jim said "Can't touch this!" I broke out into the MC Hammer tune.

Around 2:00 I walked back to the apartment and had lunch. I made a big smoothie with berries, banana, spinach, peanut butter and almond milk. I topped it with granola. Afterwards I walked to Bed, Bath and Beyond. It's only five blocks away. As I waked I passed many restaurants with their doors and windows open to the street. It's Sunday. Lots of people are out enjoying lunch or a drink and listening to music. It is sunny and fairly warm. I wished Jim could walk with me. Bed, Bath and Beyond is a huge three story store. It is much bigger than the Virginia stores. I was looking to buy colored pillow cases for Jim so I can change them out frequently. He is sleeping on our pillows from home and I only brought up a couple of cases. I got back to the hospital around 4:30. Jim had just started to rest on the couch. Luckily no one came in the room for an hour or so.

Tonight we might watch the National Geographic Special The Story of God with Morgan Freeman.

Keep it Boring

After I got back to the apartment last night I took this picture. It's hard to capture the beauty of the night with my phone. I could hear cars honking constantly but also the sound of people laughing from the streets below. All those lights inside each apartment. So many people. Such a different way of life. 

Jim was sitting on the couch in his room when I arrived this morning. We are still reveling in his new room. It is hard enough not being able to walk down the hall but having two big windows to sit near and look out through makes it bearable. He is officially a bubble boy. (Thanks for the picture Jeff). Jim will not be able to leave the room for a couple of weeks. They are very good about keeping things clean here. As I mentioned before anyone entering the room must put on gloves and a mask. They took him off of gown isolation for now. Every day housekeeping comes in and mops his floor with a special germicide. Then it is time for the Xenix Germ-Zapping Robot. This machine is placed in Jim's bathroom everyday and for 5 minutes it is able to destroy deadly microorganisms using a special kind of UV light.

We waited all morning for the medical team to come in. I didn't want to miss them and Jimmy wanted to take a shower. Finally around noon they came in. It was the weekend crew with a new doctor on call. There wasn't much to say. The only question we asked is where they sure they gave Jimmy enough chemo to knock out his blood counts. He hasn't hit rock bottom yet. The doctor explained that his counts are dropping and to enjoy feeling strong for a couple of more days. I keep thinking maybe he won't feel as bad as most people because he has tolerated all the garbage they have put into him over the last two years and he is physically fit going into this thing. We'll see how he feels tomorrow.

I left to run a few errands, post office and grocery store. I went back to the apartment to make lunch and I made a dinner for myself that I brought back to the hospital for later. I spent half an hour in the guest kitchen talking to other family members. Everybody's got something. Back in the room Jim and I did stretches. The physical therapist suggested he shoot for 30 minutes a day. I may as well do the exercises with him. My bottom is turning to jello just sitting around all day. Tonight I'll just chill with Jimmy in the room. I think I heard something about a hockey game.

Room With A View

I was surprised to see Jim in the chair when I arrived to his room this morning. He is tired but his counts are still hanging in there. Dr. Giralt and the team came by. It will be his last day on service. Everyone that sees Jim are taken back at how strong he looks. Giralt explained that he will feel pretty crappy in 2 days and for the next 2 weeks. He also told Jimmy "it was an honor and a pleasure." Neha Mehta-Shah, Dr. Horwitz's fellow, poked her head in for a visit. She has been working on Jim's case for the past year and is a very kind and gentle doctor. Lastly Dr. Sauter stopped in. We were talking to him about why Jim's counts haven't bottomed out yet. He said the chemotherapy dose was lower than what he had before when he did the transplant with his own cells. His values will decrease but they will not go to zero like we thought. His original cells have to hang around a little until the donor cells take over. It is the donor cells that will kill any remaining cancer in Jim's body once they take hold.

This weekend is the girls trip to Shrine Mont to scrapbook. We go twice a year. This will be the first one I missed in 10 years. Thanks to Laura I am there in spirit. She printed a picture of me and attached it to a stick to take along with her. I feel a part of the gang still. Thanks Laura!

We met the physical therapist today. She came in to work with Jim on setting goals for each day during his stay in the hospital. It is easy to lose strength and muscle mass when you don't feel well and can't leave your room to walk around. That's why they have the phrase "the chair is your friend".  Just the little activity of getting out of bed to sit in a chair helps the muscles move and reduces the chances of pneumonia because you are using your lungs more. She gave Jimmy light exercises he should try to work on 30 minutes each day. There are even exercises to do in bed if he is too tired to get out of it.

The most exciting thing about the day is Jim was moved to a different room. It's just down the hall but the windows are twice the size of his old room and instead of looking out onto the side of another building we now can see the sky, trees and a bit of the Ed Koch Queensboro Bridge. The room is more spacious so Jim won't feel as claustrophobic.  Seeing the sky and sunshine is important in maintaining peace of mind. Today was a good day.

Cells Are In, Let The Healing Begin.

We have waited a long time to get here. What is incredibly amazing is if it weren't for a very selfless 29 year old man, who chose to go through the donation process, Jim would have no chance at beating this cancer. Now it is a reality. Earlier this morning Dr. Giralt came in with the NP and the fellow to check on Jimmy. They always listen to his lungs, ask questions and check the area on his arm that was infected. They said the scheduled time for transplant was set for 11:00. Jimmy had breakfast, got dressed and sat up in the chair. We were going to try to do some laps but his morning blood work showed his counts had dropped to the point where he would not be allowed to leave the room.

At 10:30 his nurse came in to give him two IV antihistamine drugs so he got into bed. At 11:00 the team came back in. A representative from the stem cell lab brought the cells up. They were frozen and he defrosted them in a warm bath outside the room and put them into 2 large syringes. Dr. Giralt's fellow was given the honor of being the one to push the cells. Jim's nurse was right by his side assisting the fellow. Dr. Giralt stood at the foot of the bed next to me and the nurse practitioner was also with us. Right before the fellow started, Dr. Giralt said "May Godspeed be with you" and he mumbled a little prayer under his breath.

The entire process only took about 20-30 minutes. Dr. Giralt told stories most of the time. He referenced something about visualizing the little cells doing their work. They will find their way to Jim's bone marrow in time. 

The IV medicine made Jim sleepy. So after everyone was gone I too left the room so he could rest. The nurse still has to monitor his vitals every 20 minutes but hopefully he can doze in-between. I went back to the apartment, emailed the family, did some laundry and ate lunch in front of the TV. On my way back to the hospital I passed two homeless men both sleeping within half a block from the apartment building. Then I passed a man dressed as a clown walking in circles at the corner in front of MSK. People had to dodge him because he kept changing his position. I see the strangest things walking back and forth. Yesterday on my way back to the hospital I felt like I was tripping on LSD (not that I have ever tried it). I passed so many peculiar looking people. I pass them on the crowded streets as I walk. I wish I could document some of them in pictures.

Jim pretty much rested the remainder of the day. He sat up in the chair and we watched the very last episode of Breaking Bad. I told him he will have to decide on the next series we watch. For a guy who doesn't spend much time in front of a television with the exception of sports, Jim will be occupied with it for the next few months. After the Nightly News I headed back to the apartment. I hate leaving him but we both know I have to have my down time and good sleep if I am going to stay strong during this journey. Besides...he has the A-team watching his back. We are convinced someone hand picked the best nurses for each shift to be assigned to Jim. Jeff, the horseshoe is working well.

Day Negative 1

So I want to tell you about Alfred. Yesterday when I went into the guest kitchen I struck up a conversation with a volunteer named Alfred. He is a retired attorney living in the Upper East Side across from Central Park. He told me he started volunteering at MSK after his wife was a patient. She was diagnosed with a type of lung cancer and was only given 6 months to live by a doctor from another hospital. After reaching out to a physician friend in South Carolina, Alfred was able to get an appointment with a well known thoracic oncologist at MSK. His wife went on to live another 6 years. Alfred has also had his share of cancer. He currently has a manageable form of leukemia. He spoke so highly of Memorial Sloan Kettering and reinforced to me we were in the right place. He also stressed the importance of finding the right doctor. One that is positive, empathetic and hopeful. Jim and I thank God we found Dr. Horwitz. He is just that kind of doctor Alfred was talking about. Dr. H. gave us hope. He was the first to ever mention the possibility of a cure. Alfred also talked about the importance of mind over body, using meditation, yoga and massage to help in the healing process. I hope to run into him again. He was a shining light in my day.

This picture was taken this morning at 6:30. I should have been sleeping but my eyes opened at 6:15 and I was compelled to get an early start. I found out later that Jimmy also was awake at 6:15. Must have been telepathy.

The morning bellman at the apartment is a short European roly poly sort of man. He is very friendly and always asks "how your husband is doing?" People like to give advice or solutions when you talk about cancer. The doorman told me to get rid of the cans and meat and eat vegetables. If he only knew. The apartment has 4 or 5 different bellmen. Apartment living is so strange. At night I can hear someone's television. It plays loudly until 12:30 unless I am fortunate enough to fall asleep beforehand. I can also hear the mechanics of the elevator. And of course the constant honking of the cars from the street 16 stories down.  I wear earplugs which helps. The residents I have passed keep to themselves. Very few people engage in eye contact. They come and go looking down or on their phones. I find it that way at the hospital when I walk down the halls or when I am on the elevator.

Today was Day -1, the day of rest. Basically that meant no chemo today. There are many other medications Jimmy still gets on a regular basis and will for a while. His blood counts are beginning to drop. Today was probably the last day he would be allowed to leave the room. We walked the halls and did the 14 laps around the unit. The intention of the high dose chemotherapy is to stop his bone marrow from producing new cells. Without new cells the body stops making red blood cells, white blood cells and platelets. These are the three components that make up his bone marrow. Tomorrow Jim will receive the donor's cells. What needs to happen now is the donor's cells will eventually find their way to Jim's bone marrow and take it over. They will slowly begin to make new red blood cells, white blood cells and platelets. This process can take several weeks. During this time Jim will not have any defenses to fight infection. He will not have any way to stop bleeding and he will be extremely fatigued. This will be a trying time for him but we all know what a fighter he is and he says "bring it on". He is ready to begin getting control back of his life.

The best part of the day was when we saw a very special visitor. Dr. Horwitz came to wish Jimmy good luck. He was the best medicine of the day.

Whack-A-Melphalan

Jim had some concerns this morning. His itching and rash are beginning to reappear. We mentioned this to Dr. Giralt. If the cancer is trying to rear its ugly head again what does that mean? Dr. Giralt reassured us all the chemo drugs he has been getting the past few days including todays will do the trick to slap the cancer around. He said it is like Whack-A-Mole, the arcade game where the object of the game is to force moles back into their holes by hitting them on the head with a mallet. So todays Melphalan chemotherapy along with the other two chemo drugs will act like the mallet and whack the heck out of the cancer cells. Dr. Giralt is great. He doesn't rush, he acknowledges Jim's feelings and he waits for us to ask questions. No wonder he is chief.

Jenny was Jim's nurse. She was excellent. The nurses work 12 hour shifts, 7 to 7. She was wonderful like our Jennifer back at home who has taken care of Jim over the past year and a half. Today Jenny explained everything she was doing and she never rushed to get out of the room. Today was the day for the big dose of chemotherapy, Melphalan. To minimize the risk of getting mouth and throat ulcers from the chemo Jimmy was instructed to chew on ice for a half hour before, during and a half hour after the chemo infusion. So for an hour and a half he chewed on ice. Any time a chemo drug is given, a second nurse comes into the room to verify it is the correct drug given to the correct patient.

The morning was very busy. The occupational therapist also visited. She went over the importance of following a schedule every day and getting out of the bed even if he doesn't have the energy. Eventually the nursing assistant came in to make the bed and wait around in the room while Jim took a shower. That was my window of opportunity to leave. I ran a couple of errands then headed to the apartment. Of course right after I left Dr. Sauter (Jim's doc) stopped by to see how he was doing.

As I entered the apartment the bellman had a package for me. Actually it was a beautiful flower arrangement from Kim and Dave. What a nice surprise.
I put Bruce Cockburn music on and made dinner before
I headed back to the hospital.

After Jim's dinner we walked the 14 laps around the unit before watching one episode of Breaking Bad. We only have 3 left to the series.  I headed home close to 11:00. Tomorrow is a day of rest. That means no chemo. I didn't get to talk about Alfred. I'll save that story for tomorrow.