I arrived in New York on Monday (Jan. 3rd) for a Dr.'s appointment and to check into the Hope Lodge NYC. I had been complaining that my stomach hurt and was distended. When the doctor was finally able to examine me, they sent me to Urgent Care to drain the fluid. After it was drained, I felt 10x better. (They drained 4.5 liters of fluid from my abdomen!)
Katie arrived in NYC on Wednesday and helped settle in at the Hope Lodge. The place is a nice size and very comfortable. Only 2 things Katie would change: 1) we have 2 twin beds, so we are the Cleavers (we are trying to get into a new room with one bed so we haven't yet settled in (i.e. Unpacked) in this one 2) the couch is not a nap-able couch, so we will have to work around that a bit. There is ample closet space and the bedding is nice as well. They have a common area for a kitchen on each floor and a floor for guests to visit. No guests upstairs in the rooms.
I spent Thursday wandering around New York and walked about 80 blocks, while Katie stayed back at the Lodge working. We met with the doctor in the afternoon and they talked to us about the possibility of NOT being admitted on Friday - for a couple reasons. 1) somewhere the appointment for my first dialysis (Leukopherisis) treatment was not scheduled for the 18th as it should be and they did not have any space for an additional appointment. 2) the hospital is over-capacity right now. I am a priority because the extraction schedule is so complicated, it cannot be diverted from. We heard from the nurse Friday afternoon and I am now scheduled to start for sure on Sunday (tomorrow) This also pushes back the timing of when they put in the catheter.
Our Address (until we change rooms, which we think will only be at the end of February)
Allen R Lee
American Cancer Society
Hope Lodge New York City
132 W 32nd Street
Room #1108
New York, NY 10001
Phone # - 212 897 4420 x1108
(you need the room number only for Mail, UPS and FedEx packages do not need the room number)
I'm looking forward to getting started tomorrow so I can put this all behind me and get on with my life.
Saturday, January 9, 2010
Monday, May 11, 2009
The event was a blast!
The last couple of weeks have been really busy. Almost not a moment to sit and relax until now. Monday, the 27th of April, my cousin from New York, Dawn, came in for the week for the event and to help out for the week. This was the week before chemo was scheduled to begin.
The event on Tuesday April 28th was a huge success! Both Katie and I were overwhelmed with all the people that came. Everyone had a great time, the food was amazing and you really couldn't have asked for better weather. I am sure that everyone has seen the photos via Facebook. If you haven't, here's the link:
http://www.facebook.com/home.php?ref=home#/photo_search.php?oid=70294957431&view=all
The rest of the week was jammed with doctors appointments. I think I had about six of them lined up for that week. Most of them were going to see other doctors to see if we were doing the right things medically or if maybe we should be going in some other direction. All of them gave reassuring answers.
One other exciting thing that we did that week was go to the Rockies game on Wednesday. Yes, I was well enough to ride the bus down and sit in the sun and enjoy the baseball game. Dawn enjoyed it all except for me not bringing the sunscreen. I should have known better.
Katie's Uncle Scott arrived on Thursday the 30th of April but didn't "move in" until Friday (May 1st). He was here for two and a half weeks, although it didn't feel like it. He brought his dog Gracie with him from his long trip from North Carolina. She and Macaroni got along great from the minute that they walked in the door. It almost makes me want to get a second dog.
The following week, the week of May 4th, my chemo was scheduled to start on Tuesday. We started around 7am and they administered both drugs (oxaliplatin and gemcitabine). They did the infusion as an outpatient therapy and we left there by 1pm. I didn't feel very good the rest of the day and for the next few days. That night I did end up vomiting a few times because we didn't stay ahead of the nausea. It wasn't until Thursday afternoon that I started to feel better and started eating food.
The week of May 11th was a pretty low key week as well. I had chemo on Tuesday of this week and it fairly well as I was able to eat later that afternoon with giving it back. During the weekend we went to Becky's House (Katie's sister) to celebrate Mother's Day and Jenny's Birthday (Katie's other sister). There was great food there that I was able to enjoy!
This past week I have had the week off from chemo and it has been great to have this week to relax. I went out to lunch with a few friends and met a few others for dinner during this week. My energy level during this week has been the best that it has been in a few months.
As I mentioned earlier, both Katie and I can't thank everyone enough for the show of love and support that you all have given us during this trying time. After going to a celebration of life on Friday from a friend that passed away it reminded me of how we should have more events like the one my friends and family put on for me. We should celebrate, love and support people more while they are here.
The event on Tuesday April 28th was a huge success! Both Katie and I were overwhelmed with all the people that came. Everyone had a great time, the food was amazing and you really couldn't have asked for better weather. I am sure that everyone has seen the photos via Facebook. If you haven't, here's the link:
http://www.facebook.com/home.php?ref=home#/photo_search.php?oid=70294957431&view=all
The rest of the week was jammed with doctors appointments. I think I had about six of them lined up for that week. Most of them were going to see other doctors to see if we were doing the right things medically or if maybe we should be going in some other direction. All of them gave reassuring answers.
One other exciting thing that we did that week was go to the Rockies game on Wednesday. Yes, I was well enough to ride the bus down and sit in the sun and enjoy the baseball game. Dawn enjoyed it all except for me not bringing the sunscreen. I should have known better.
Katie's Uncle Scott arrived on Thursday the 30th of April but didn't "move in" until Friday (May 1st). He was here for two and a half weeks, although it didn't feel like it. He brought his dog Gracie with him from his long trip from North Carolina. She and Macaroni got along great from the minute that they walked in the door. It almost makes me want to get a second dog.
The following week, the week of May 4th, my chemo was scheduled to start on Tuesday. We started around 7am and they administered both drugs (oxaliplatin and gemcitabine). They did the infusion as an outpatient therapy and we left there by 1pm. I didn't feel very good the rest of the day and for the next few days. That night I did end up vomiting a few times because we didn't stay ahead of the nausea. It wasn't until Thursday afternoon that I started to feel better and started eating food.
The week of May 11th was a pretty low key week as well. I had chemo on Tuesday of this week and it fairly well as I was able to eat later that afternoon with giving it back. During the weekend we went to Becky's House (Katie's sister) to celebrate Mother's Day and Jenny's Birthday (Katie's other sister). There was great food there that I was able to enjoy!
This past week I have had the week off from chemo and it has been great to have this week to relax. I went out to lunch with a few friends and met a few others for dinner during this week. My energy level during this week has been the best that it has been in a few months.
As I mentioned earlier, both Katie and I can't thank everyone enough for the show of love and support that you all have given us during this trying time. After going to a celebration of life on Friday from a friend that passed away it reminded me of how we should have more events like the one my friends and family put on for me. We should celebrate, love and support people more while they are here.
Thursday, April 23, 2009
Taking a few weeks....
This week and next I am taking time to unwind from the surgery and the radiation therapy that I endured during the last few weeks. I have some follow up appointments, MRIs and second opinions that we need to seek out during this time as well.
As far as how I am feeling physically, I actually am able to get out and drive and run some errands and do a few things around the house. I still can't lift anything over 15lbs. for at least another four weeks. I have been able to take a walk around the neighborhood with Macaroni (our dog) fairly easily. My appetite is getting better as well. I am actually eating three square meals a day!
We are scheduled to start chemo the first or second week of May. This is basically a clinical trial. Here's the link to the article that our doctor pulled...
http://jco.ascopubs.org/cgi/content/full/22/1/108
(The article is medical driven and may be a little hard to follow should you choose to click on the link and read it.)
Our doctor has consulted with the world's greatest minds on Testicular Cancer including Dr. Larry Einhorn (one of the doctors credited with saving Lance Armstrong's life). And all believe that this regimen of chemo is the way to go for me.
I am going to make the most of this next week. I still have quite a few appointments that I have to make and events to attend. It is going to be a very busy week!
As far as how I am feeling physically, I actually am able to get out and drive and run some errands and do a few things around the house. I still can't lift anything over 15lbs. for at least another four weeks. I have been able to take a walk around the neighborhood with Macaroni (our dog) fairly easily. My appetite is getting better as well. I am actually eating three square meals a day!
We are scheduled to start chemo the first or second week of May. This is basically a clinical trial. Here's the link to the article that our doctor pulled...
http://jco.ascopubs.org/cgi/content/full/22/1/108
(The article is medical driven and may be a little hard to follow should you choose to click on the link and read it.)
Our doctor has consulted with the world's greatest minds on Testicular Cancer including Dr. Larry Einhorn (one of the doctors credited with saving Lance Armstrong's life). And all believe that this regimen of chemo is the way to go for me.
I am going to make the most of this next week. I still have quite a few appointments that I have to make and events to attend. It is going to be a very busy week!
Monday, April 20, 2009
Been home for about a week...
I love being in the comforts of home. Especially after an unexpected trip to the hospital, admission and surgery on my abdomen for the 4th time. So for the past week or so, I have been resting and doing little things around the house. Last Thursday evening, we had some friends over and Edwin made some noodles. A good Asian noodle dish was just the right medicine. It was the biggest meal that I had had since well before surgery. We had some leftovers until Saturday. That was good because Saturday was a great noodle day. (It rained and snowed here on Friday and into all day Saturday.)
We went to Katie's sister's house on Saturday evening and spent some quality time with them and the family. We finally got to see their new home. I guess I wouldn't quite call it a home yet because their is still a little unpacking that needs to be completed. Katie cooked up a nice organic chicken dish that was really flavorful. Dave put the kids to bed around eight and we had the rest of the evening to kick back. We played a little Mario Kart on the Wii and Katie was excited that her Wii Fit age is her actual age! We left their house pretty late that night -- after midnight.
The next morning the sun came out and it was a gorgeous day! Katie's other sister Becky called and wanted to come over with Ben and Quinn and set up my birthday present -- an organic garden! They got here around 11:30am. I am really excited that I am going to have a little garden this year! Russ came over at around the same time and I whipped up a little brunch.
This morning the cleaners came over and cleaned some areas that needed to be done -- badly! With all the shuffling back and forth to the hospital, the emergency surgeries, trips to the ER, who has time to clean? A friend of ours got us a maid service for a couple of hours! How great was that! Wish they would have gotten to a little more of the house but the rooms they did look great!
I kicked back and took a nap this afternoon. I haven't napped in a while. As a matter of fact, my sleeping habits haven't been great since I got out of surgery last Wednesday. I find myself getting up at 5am everyday. I am taking a sleeping pill and a natural sleep agent and still I can only seem to get maybe six hours of sleep per night. Once my body calms down from the surgery, I think sleeping will get better.
Tonight happened to be the 'Man Dinner'. Once a month, the boys get together for a night and shoot the breeze and to catch up. Tonight was the Happy Noodle in Boulder and the special sandwich was really good! It was a crab tempura sandwich with a dipping sauce. Need to find a way to get that on the menu for awhile.
We went to Katie's sister's house on Saturday evening and spent some quality time with them and the family. We finally got to see their new home. I guess I wouldn't quite call it a home yet because their is still a little unpacking that needs to be completed. Katie cooked up a nice organic chicken dish that was really flavorful. Dave put the kids to bed around eight and we had the rest of the evening to kick back. We played a little Mario Kart on the Wii and Katie was excited that her Wii Fit age is her actual age! We left their house pretty late that night -- after midnight.
The next morning the sun came out and it was a gorgeous day! Katie's other sister Becky called and wanted to come over with Ben and Quinn and set up my birthday present -- an organic garden! They got here around 11:30am. I am really excited that I am going to have a little garden this year! Russ came over at around the same time and I whipped up a little brunch.
This morning the cleaners came over and cleaned some areas that needed to be done -- badly! With all the shuffling back and forth to the hospital, the emergency surgeries, trips to the ER, who has time to clean? A friend of ours got us a maid service for a couple of hours! How great was that! Wish they would have gotten to a little more of the house but the rooms they did look great!
I kicked back and took a nap this afternoon. I haven't napped in a while. As a matter of fact, my sleeping habits haven't been great since I got out of surgery last Wednesday. I find myself getting up at 5am everyday. I am taking a sleeping pill and a natural sleep agent and still I can only seem to get maybe six hours of sleep per night. Once my body calms down from the surgery, I think sleeping will get better.
Tonight happened to be the 'Man Dinner'. Once a month, the boys get together for a night and shoot the breeze and to catch up. Tonight was the Happy Noodle in Boulder and the special sandwich was really good! It was a crab tempura sandwich with a dipping sauce. Need to find a way to get that on the menu for awhile.
Sunday, April 12, 2009
Wow!... We are really lucky to have so many great people in our lives!
All of the offers of help and energy and everything coming our way is amazing!! We have several options of places to take Mac where he is really happy. People come to the hospital and spend time. We get calls and sometimes it feels like grand central station. People are bringing Katie food since she doesn't like to leave me in this boring place. We have so many people behind us and rooting for us and it is such an amazing feeling that sometimes when I think about it, it gets me a little teary eyed and overwhelms me with positive emotion.
So... I wanted to let you all know that we really appreciate all of it and THANK YOU from the bottom of our hearts! It makes us fight that much harder to know how you all feel. We also appreciate all the help that is coming in from so many angles.
... the Easter Bunny came to my room too... in the form of Katie's family and Russ and Ronan ... pictures below.
So... I wanted to let you all know that we really appreciate all of it and THANK YOU from the bottom of our hearts! It makes us fight that much harder to know how you all feel. We also appreciate all the help that is coming in from so many angles.
... the Easter Bunny came to my room too... in the form of Katie's family and Russ and Ronan ... pictures below.
Another ''bump'' in the road...
Well, we have hit another bump in the road.
Early last week, I was having abdomen pain and was unable to keep anything down. During our daily visit to Radiation on Tuesday, we talked to the radiation oncologist and described what I was feeling. They sent us to the ER for X-rays of the abdomen, gave me some fluids via IV and because there was nothing evident, we were sent home with some laxitives.
That night, I still didn't feel well and the laxitives weren't working and I was still not able to keep anything down. Russ took me back to the hospital on Wednesday and they admitted me. Using a CT scan they found I had a bowel obstruction - due to scar tissue in the area - and they scheduled me for emergency surgery last Wednesday night.
They went through the same incision and removed the obstruction/scar tissue. I am back in the hospital - probably until Wednesday or Thursday of this week. One dose of radiation was skipped. (still TBD if the missed treatment from last Thursday will be tacked onto the end, making the end of radation be 4/16 instead of 4/15.)
They had an NG Tube down my nose and throat to give my digestive system a rest and that was very annoying. That was taken out yesterday and I couldn't stop grinning! Today I am "eating" clear liquids and so far so good.
This time I have been a lot more awake and it seems like in a lot less pain so hopefull recovery will be quick! I am sitting up and walking around a lot.
Early last week, I was having abdomen pain and was unable to keep anything down. During our daily visit to Radiation on Tuesday, we talked to the radiation oncologist and described what I was feeling. They sent us to the ER for X-rays of the abdomen, gave me some fluids via IV and because there was nothing evident, we were sent home with some laxitives.
That night, I still didn't feel well and the laxitives weren't working and I was still not able to keep anything down. Russ took me back to the hospital on Wednesday and they admitted me. Using a CT scan they found I had a bowel obstruction - due to scar tissue in the area - and they scheduled me for emergency surgery last Wednesday night.
They went through the same incision and removed the obstruction/scar tissue. I am back in the hospital - probably until Wednesday or Thursday of this week. One dose of radiation was skipped. (still TBD if the missed treatment from last Thursday will be tacked onto the end, making the end of radation be 4/16 instead of 4/15.)
They had an NG Tube down my nose and throat to give my digestive system a rest and that was very annoying. That was taken out yesterday and I couldn't stop grinning! Today I am "eating" clear liquids and so far so good.
This time I have been a lot more awake and it seems like in a lot less pain so hopefull recovery will be quick! I am sitting up and walking around a lot.
Back to the hospital again
You can see exactly where they are radiating. It is peeling a little bit now - just some "sun"for that area. Our friend Melissa said that since it is just like the sun - we should go to Florida sunscreen up everything but that spot and just lay in the sun all day. (though I think the 5 mins on the table is a little more intense - it sounds like a good theory!)
The new incision was about 2/3 of the previous one. (time #4 through that scar)
NG Tube - Yuck, painful, all around uncomfortable.
The Vargas' visited... the future's so bright I gotta wear shades.
The new incision was about 2/3 of the previous one. (time #4 through that scar)
NG Tube - Yuck, painful, all around uncomfortable.
The Vargas' visited... the future's so bright I gotta wear shades.
Clearing my mouth with the "Yankgour" no clue how to spell it... just like the dentist tool.
NG Tube out AND I am eating! (well - clear liquids - so drinking)
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