Happy Easter everyone...
I'm back on treatment after our little set back. We went down to the city this past Wednesday and saw the doc. We decided to re-introduce Avastin into the treatment. Hopefully that will speed up the results so I can get to the resection sooner. We will be cutting our trips down to the city to once a month now. We have a doc at Albany Med who is collaborating with our Sloan doc. That will save us alot of time and money.
I hope everyone has a Happy Easter and a great spring.
Love and gratitude to all...
Sunday, April 4, 2010
Saturday, March 20, 2010
Back in the Saddle
We went to the city on St. Patricks Day to visit the doc at Sloan. We were hoping to get over to 5th ave. to check out the parade but we had no such luck. We did mangage to have a corned beef and cabbage dinner at an Irish pub so that was our substitute. Treatment was with held to give me a chance to bounce back from the month long pain episode that I experienced. FINALLY THE PAIN HAS SUBSIDED! The suspicion is that I had an ulcer and it healed up with the doubling dose of prilosec. I worked from home this past week and I plan to head into the office on Tuesday. Sandy is away for the week end visiting her girlfriend down in North Carolina. It is a well deserved break for her and I just hope she comes back home (hahaha). Me and Olivia are enjoying our time together with a little help from Granma who is staying with us while Sandy is gone. Today we went to an awesome playground at the Hillside school in Niskayuna. It was lots of fun and afterwards we went to Target and did a little shopping.
I want everyone to know that I am feeling much better now that the pain is gone and I am concentrating on staying healthy and giving nothing back to the disease. My immune sytem is strong and the diease is weak. I feel my system kicking its ass....
Thats all for now!
I want everyone to know that I am feeling much better now that the pain is gone and I am concentrating on staying healthy and giving nothing back to the disease. My immune sytem is strong and the diease is weak. I feel my system kicking its ass....
Thats all for now!
Saturday, March 13, 2010
Bump in the road
Its been a while since I posted so here goes. Treatment has been going well and my first scan since starting the new protocol showed that the disease is on the run. The tumors are shrinking at a good rate (one has shrunk by a 1/3) and nothing new is showing up. Great News!
Shortly after I had the scan done I started experiencing pain in my abdomen. It started 1 day at work the pain was so bad that I had to leave and coworkers were commenting that they could see the pain in my face. I had an appointment with my doc at Sloan the following week and told him of the pain. He ordered a chest X-ray and an EKG both of which showed nothing remarkable. I ended up taking the treatment and went home. The pain did not go away and we called the doc to let him know about it. I was told to take the pain killers (percocet) to manage the pain. I was pretty much bed ridden and doubled over with pain. I was unable to go to work due to being on the pain killers and the pain was still present. I went down to Sloan for treatment and complained to the doc and nurses that the pain was out of control and unmanageable. He ordered a CT scan and withheld treatment. He also stepped up the pain killers (oxy contin was prescribed) and scheduled an endoscopy. The doc thought I may have an ulcer that was caused by the chemo. Sandy ended up working some magic and was able to get an appointment in Albany with a GI doc. We went to a consult and had the procedure done. Unfortunately or fortunately depending on how you look at it, the endoscopy ruled out an ulcer. So here I sit still in pain but managing it better with pain killers. I hope to get back to work this week working from home because I won't be able to drive while I am taking the pain killers. I go to Sloan again next week and I'm wondering what's next as far as tests go. I really want to know what is causing the pain so we can address it and move on.
I want to close this post by thanking my wife Sandy for all her hard work managing my care team, scheduling appointments, billing, and all the other things that go along with taking care of me. I really appreciate it and love you more each day we are together. I also want to express my gratitude to my employer for giving me the flexibility that I need in order to get through trying times like I have been having recently. Thank you Paul, Chris, Bill, Dennis, J*** and everyone there for everything you do for me.
Shortly after I had the scan done I started experiencing pain in my abdomen. It started 1 day at work the pain was so bad that I had to leave and coworkers were commenting that they could see the pain in my face. I had an appointment with my doc at Sloan the following week and told him of the pain. He ordered a chest X-ray and an EKG both of which showed nothing remarkable. I ended up taking the treatment and went home. The pain did not go away and we called the doc to let him know about it. I was told to take the pain killers (percocet) to manage the pain. I was pretty much bed ridden and doubled over with pain. I was unable to go to work due to being on the pain killers and the pain was still present. I went down to Sloan for treatment and complained to the doc and nurses that the pain was out of control and unmanageable. He ordered a CT scan and withheld treatment. He also stepped up the pain killers (oxy contin was prescribed) and scheduled an endoscopy. The doc thought I may have an ulcer that was caused by the chemo. Sandy ended up working some magic and was able to get an appointment in Albany with a GI doc. We went to a consult and had the procedure done. Unfortunately or fortunately depending on how you look at it, the endoscopy ruled out an ulcer. So here I sit still in pain but managing it better with pain killers. I hope to get back to work this week working from home because I won't be able to drive while I am taking the pain killers. I go to Sloan again next week and I'm wondering what's next as far as tests go. I really want to know what is causing the pain so we can address it and move on.
I want to close this post by thanking my wife Sandy for all her hard work managing my care team, scheduling appointments, billing, and all the other things that go along with taking care of me. I really appreciate it and love you more each day we are together. I also want to express my gratitude to my employer for giving me the flexibility that I need in order to get through trying times like I have been having recently. Thank you Paul, Chris, Bill, Dennis, J*** and everyone there for everything you do for me.
Thursday, January 21, 2010
The people you meet
Went down to Sloan last Wednesday for a treatment. No doctor visit, just a treatment. The appointment was at 2:30 so we took the 10:05 out of Albany and got down there around 12:30. It was warm (40 degrees) in the city so we decided to hike the 20 blocks up to 53rd st. to have lunch at the Stage Deli. The walk was nice and Times Square as usual was bustling with tourists. You can tell the tourist from the local by either their stare upwards (tourist) or their stare straight ahead avoiding eye contact with all the tour bus guys or the b-way show ticket guys. At this point I'm a mix. I still look and have mastered the friendly "no thank you" to the street sales folks. Lunch was delicious as usual. Had the corned beef half sandwich with a side of potato salad. We ended up continuing our walk over to the clinic. Another 10 blocks or so. Total distance from Penn to the clinic approx. 1.5 miles. Saved the cab fare.
We got to the clinic and had my blood drawn and sat down to our wait. We were sitting down in this area of the room and in walked a guy who wreaked of cigarette smoke. Smelled like he rolled in an ashtray. I'm a former smoker so I'll admit I'm a bit sensitive to the smell. Any ways I had to get up and move away from the offending odor. While sitting in our less smelly area of the waiting room I overheard this guys talking to one of the women who work the front. He was telling his story. His journey seemed to parallel mine except he was ahead of me. When he walked by I said hello and told him that I liked his story. He sat with us and filled us in further. He was diagnosed in 2004 had undergone multiple surgeries and treatment protocols and is now NED (no eveidence of disease). He went on to tell us that he was a teamster and worked as a key grip in the city. He told us about all the movies and TV shows that he worked on. He was very positive and made me feel great to have met him.
We also met a woman who had an incredible story too. She was around our age and was diagnosed with CC about 4 years ago. She told us she went thru some sugery and treatment was declared clean and was then whacked with breast cancer. She really was a trooper and was also very positive. She told us of her ordeal and was very comedic about it. Again I was glad that she came into our lives and shared her story and listened to ours.
It seems that the law of atraction was at work that day down at sloan. I was wearing one of my "Life is Good" shirts and smiling and feeling upbeat. What you think about you bring about and we were so lucky to bring 2 special strangers who we now consider freinds into our life.
We got to the clinic and had my blood drawn and sat down to our wait. We were sitting down in this area of the room and in walked a guy who wreaked of cigarette smoke. Smelled like he rolled in an ashtray. I'm a former smoker so I'll admit I'm a bit sensitive to the smell. Any ways I had to get up and move away from the offending odor. While sitting in our less smelly area of the waiting room I overheard this guys talking to one of the women who work the front. He was telling his story. His journey seemed to parallel mine except he was ahead of me. When he walked by I said hello and told him that I liked his story. He sat with us and filled us in further. He was diagnosed in 2004 had undergone multiple surgeries and treatment protocols and is now NED (no eveidence of disease). He went on to tell us that he was a teamster and worked as a key grip in the city. He told us about all the movies and TV shows that he worked on. He was very positive and made me feel great to have met him.
We also met a woman who had an incredible story too. She was around our age and was diagnosed with CC about 4 years ago. She told us she went thru some sugery and treatment was declared clean and was then whacked with breast cancer. She really was a trooper and was also very positive. She told us of her ordeal and was very comedic about it. Again I was glad that she came into our lives and shared her story and listened to ours.
It seems that the law of atraction was at work that day down at sloan. I was wearing one of my "Life is Good" shirts and smiling and feeling upbeat. What you think about you bring about and we were so lucky to bring 2 special strangers who we now consider freinds into our life.
Friday, January 15, 2010
It's a New Year!
Well its a new year and I'm looking forward to enjoying life and spending time with those who make me happy. Specifically family and friends.
So the treatment I had in early December really knocked me down. My liver was pretty well fried and was no processing properly. I declined the 2nd treatment in December and my doctor readily agreed. I needed a break. I went back down to Sloan last week and got the treatment. Pump was filled and systemic was administered albeit at a lower dose. The lower dose has definitely agreed with me. I felt great and didn't have any of the nasty side effects with the exception of a slight mouth sore which I'm trying to fight off with salt water rinses and swish.
Work is going well and with the new style 48 hour infusion pump I am able to go into the office instead of working from home. Our company is doing great and growing rapidly despite the current economic climate. I feel very lucky and blessed to have landed here. The lord works in mysterious ways and I know that I was given this opportunity on purpose.
Family life is great. Sandy and Olivia have been going to various play groups in order to escape the confines of our home. Sandy redecorated and painted our bed room recently and did a great job. We installed a back up generator on our house. Now if the power goes out the generator automatically starts and powers a sub set of circuits in our house. Bring on the ice storms we're ready.
Well thats all I have for now. I'm enjoying my long 4 day weekend, went to an antique show today, going to dinner and movies with Sandy tommorow and who knows what for Sunday and Monday.
Thanks for all your prayers and support.
So the treatment I had in early December really knocked me down. My liver was pretty well fried and was no processing properly. I declined the 2nd treatment in December and my doctor readily agreed. I needed a break. I went back down to Sloan last week and got the treatment. Pump was filled and systemic was administered albeit at a lower dose. The lower dose has definitely agreed with me. I felt great and didn't have any of the nasty side effects with the exception of a slight mouth sore which I'm trying to fight off with salt water rinses and swish.
Work is going well and with the new style 48 hour infusion pump I am able to go into the office instead of working from home. Our company is doing great and growing rapidly despite the current economic climate. I feel very lucky and blessed to have landed here. The lord works in mysterious ways and I know that I was given this opportunity on purpose.
Family life is great. Sandy and Olivia have been going to various play groups in order to escape the confines of our home. Sandy redecorated and painted our bed room recently and did a great job. We installed a back up generator on our house. Now if the power goes out the generator automatically starts and powers a sub set of circuits in our house. Bring on the ice storms we're ready.
Well thats all I have for now. I'm enjoying my long 4 day weekend, went to an antique show today, going to dinner and movies with Sandy tommorow and who knows what for Sunday and Monday.
Thanks for all your prayers and support.
Tuesday, December 29, 2009
Merry Christmas
Christmas has come and gone. We were down in the city on the 23rd to see the Oncologist. I had a bit of a rough cycle and I was not prepared to undergo another. I ended up with my hands burning. They looked like I dipped them in boiling water. I couldn’t close my hands to make a fist without feeling lots of pain. I was so exhausted and fatigued that I was coming home from work and was in bed by 8 PM for a couple of weeks. The doc told us that it was caused by my liver not being able to keep up with its job of cleaning the chemo out of my blood therefore the stuff was hanging around longer than necessary and hence the side effects. We decided that it would be best to reduce the dosage so I don’t get so fatigued. It’s a quality of life issue. The doctor gave me a script for some medicine to boost my liver which seems to be working. I declined the treatment that was scheduled because wanted to feel good for the holidays and the doctor said that it would not be a problem and wouldn’t hurt anything. He told us "Big picture your doing great, this is typical and you should not worry about it." They filled my HAI pump with saline as scheduled and off we went. We had record time in out in less than 2 hours. We had lots of time before our train home so we went up to 5th Ave. to check out the window displays and to shop some. We stopped at St. Pats and ended up staying for the noon mass. We said a prayer at Ann Seton’s shrine and made our way over to Rockefeller Center to check out the Christmas tree. The tree was very beautiful and it looks much bigger on TV than in real life.
The whole area was decked out with great displays of the Christmas season.
We continued our adventure and found ourselves at the Stage Deli which is one of our favorites in the city. We had a hot coffee and a corned beef sandwich that was delicious. It was around 4PM and we thought we’d try to see if we could catch an early train home. No such luck all the train are sold out going to Albany. Oh well… We ended up at a bar in Penn and sat down to kill 2 hours before our train departed. Sandy had some drinks and I drank water. We met and chatted with lots of other travelers. It was nice to meet so many friendly people. We made it home without any issues and started getting ready for our big Christmas dinner party.
We have been hosting Christmas dinner for family for a couple of years now. So we had lots of prep work to do and by we I mean Sandy. She is the best and really did a great job putting it all together. Olivia was looking forward to the arrival of Santa Claus and her gifts that would be under the tree. We spent Christmas Eve setting up and getting ready for the next day. Olivia was in bed by 8:30 anda slept right through the night. She woke up around 6:45 and wanted to come to our bed and snuggle with us. This is her morning ritual. I asked her a couple of times if she wanted to go down and see if Santa came and she would reply “no not yet, maybe after Blue’s Clues”. Eventually she hopped out of bed and ran down stairs to the tree. We were hot on her tail but she made it there ahead of us and all we heard was “ooooooooo Santa came”. She opened her gifts and liked each one better than the last. She is such a happy kid. We got ready for our company to arrive. Uncle Jim and Aunt Lisa (Olivia’s God Parents) came around noon time. Aunt Lisa had to work so she wanted to see Olivia open her presents. Everyone else arrived shortly thereafter. Olivia took her nap as scheduled and woke up right before we all sat down for ham dinner Christmas feast. We said grace and then went around the table stating what we were grateful for. I started by giving thanks for Sandy and Olivia and all the joy that they bring me. I am thankful for my care team that they are so smart and have the knowledge to lead me to a cure. I gave thanks for my supportive family who is always there for us no matter what. Dinner was delicious and everyone enjoyed the sweets for dessert afterwards. Christmas day was a great time for all.
We are now awaiting the New Year which I pray will be filled with healing and good health. I hope your New year brings you all you ever wanted and lots of good fortune. Until next time.
The whole area was decked out with great displays of the Christmas season.
We continued our adventure and found ourselves at the Stage Deli which is one of our favorites in the city. We had a hot coffee and a corned beef sandwich that was delicious. It was around 4PM and we thought we’d try to see if we could catch an early train home. No such luck all the train are sold out going to Albany. Oh well… We ended up at a bar in Penn and sat down to kill 2 hours before our train departed. Sandy had some drinks and I drank water. We met and chatted with lots of other travelers. It was nice to meet so many friendly people. We made it home without any issues and started getting ready for our big Christmas dinner party.
We have been hosting Christmas dinner for family for a couple of years now. So we had lots of prep work to do and by we I mean Sandy. She is the best and really did a great job putting it all together. Olivia was looking forward to the arrival of Santa Claus and her gifts that would be under the tree. We spent Christmas Eve setting up and getting ready for the next day. Olivia was in bed by 8:30 anda slept right through the night. She woke up around 6:45 and wanted to come to our bed and snuggle with us. This is her morning ritual. I asked her a couple of times if she wanted to go down and see if Santa came and she would reply “no not yet, maybe after Blue’s Clues”. Eventually she hopped out of bed and ran down stairs to the tree. We were hot on her tail but she made it there ahead of us and all we heard was “ooooooooo Santa came”. She opened her gifts and liked each one better than the last. She is such a happy kid. We got ready for our company to arrive. Uncle Jim and Aunt Lisa (Olivia’s God Parents) came around noon time. Aunt Lisa had to work so she wanted to see Olivia open her presents. Everyone else arrived shortly thereafter. Olivia took her nap as scheduled and woke up right before we all sat down for ham dinner Christmas feast. We said grace and then went around the table stating what we were grateful for. I started by giving thanks for Sandy and Olivia and all the joy that they bring me. I am thankful for my care team that they are so smart and have the knowledge to lead me to a cure. I gave thanks for my supportive family who is always there for us no matter what. Dinner was delicious and everyone enjoyed the sweets for dessert afterwards. Christmas day was a great time for all.
We are now awaiting the New Year which I pray will be filled with healing and good health. I hope your New year brings you all you ever wanted and lots of good fortune. Until next time.
Monday, December 14, 2009
Off to Sloan in snow storm...
This past Wednesday we had our first (well second) snow storm. We knew it was coming so we got up extra early to get the train. We left our house at 6:50 am and didn't arrive at the train station until 8:15 am. The driving conditions were horrible and subsequently we missed our train. Next train at 10:15. The ticket agent was very kind and gave us the same price for the reissues tickets. He could of charged us and additional $40. Good things will come him I'm sure. So we waited in the train station. Thankfully they have wireless access and I was able to work while Sandy facebooked. We called the office and let them know we were going to be late due to the storm. We arrived in the city at 12:30 and jumped in a cab over to the the office. They quickly drew my blood and then shortly there after I saw my oncologist. "Everything is going along great" he said "from our perspective you are doing great and have nothing to worry about". Nice news to hear. Chemo was prescribed and I was off to see the surgeon for a follow up. She was happy to see the wound and its healing progress. She mentioned that I could consider thinking about the reversal of the ostomy. This is something that I'm anxious to do but I'll have to talk it over with my oncologist. I think that we'll wait and see what happens with the current chemo regimen and if I get to resection then we'll do both procedures in one shot.
I'm back to work now and its been Ok so far. I am very tired by the end of the day and usually I'm in bed shortly after Olivia (9PM). This past treatment was little rough and I spent most of the weekend in bed. I worked from home on Monday. I'm hoping I feel up to going into the office on Tuesday.
We also got our bill for the copay from Sloan today complete with a 20% discount. Totally unexpected and certainly welcome. Cancer is expensive to treat and to live with. I thank my lucky starts that I have the means and a good job that enables us to afford it. I can't imagine what it would be like if we didn't have insurance.
Thanks to everyone who reads my posts. Sometimes I feel like they are so self centered but I guess you guys want to know what's going on in my life. So with that thank you all for your support and encouragement. Have a happy holiday season!
I'm back to work now and its been Ok so far. I am very tired by the end of the day and usually I'm in bed shortly after Olivia (9PM). This past treatment was little rough and I spent most of the weekend in bed. I worked from home on Monday. I'm hoping I feel up to going into the office on Tuesday.
We also got our bill for the copay from Sloan today complete with a 20% discount. Totally unexpected and certainly welcome. Cancer is expensive to treat and to live with. I thank my lucky starts that I have the means and a good job that enables us to afford it. I can't imagine what it would be like if we didn't have insurance.
Thanks to everyone who reads my posts. Sometimes I feel like they are so self centered but I guess you guys want to know what's going on in my life. So with that thank you all for your support and encouragement. Have a happy holiday season!
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