Sunday, October 17, 2010

Time to tie up some loose ends - literally!

Everything is going great and I'm feeling pretty good, something I haven't felt in a while. I have this artifact from last years surgery called a temporary ileostomy that needs to be reversed. (Google it for more deatils on what it is.) Another artifact that I am carrying around is a surgical incision hernia. The hernia broke though back in late February. While it was breaking through I was in a world of hurt that wasn't helped by even the strongest pain killers. The hernia settled down but still presented problems in the form of pain now and again and was pretty unsightly. It literally looked like a cantaloupe was sticking out of the middle of my chest. So long story short I decided it was time to address these 2 issues and take a break from chemo.

I met with Dr. Temple and Dr. D'Angelica to discuss surgical options. Dr. Temple was game to do the hernia repair and the ostomy take down. Dr. D'Angelica agreed to do a visual inspection on my liver. The surgery was scheduled for October 7th which is 2 days short of a year since my last surgery. I went through the battery of pre-surgical testing and was sent home to wait and rest up for the big day. I had about 3 weeks to wait in which I worked full time at the job which by the way is going great. So much gratitude goes out to The Treo principals and all my co-workers without them I don't know where I'd be right now. Sandy attempted to secure housing at Miracle House but the Inn was full and no rooms were available. She found a place that was 2 blocks from the hospital which was great however the cost was 5X as much as Miracle House. Oh well...

The big day came and we were on our way down to the city. As usual we took the Amtrak down and had a beautiful ride down the Hudson. The Catskills were ablaze with their fall colors and the typical wild life were spotted along the way (saw 5 eagles 3 mature adults and 2 juvies). We arrived in NYC on time a cabbed it over to our accommodations, The Helmsley Medical Tower and this place was really nice. The room came equipped with a small kitchen, HD cable TV with HBO. The place was pretty quiet as it is used solely by folks in similar situations. The best feature of course was its location. We went to the market and stocked up the room with some food and beverage. This was torture for me as I was not allowed any food the day before surgery. We went back to the hotel for a good nights sleep.

We reported to the hospital at 7:30 AM on Thursday. Went through the paper work and signed a bunch of stuff. The nurse gave me my uniform for the week and told me to pack my stuff away in a garment bag that would be delivered to my room. Next I was prepped for the IV and anesthesia. 1 needle on the top of my hand the second in my medi-port. Dr. Temple stopped by to say hello and ask me about stuff before we began . She was off and about 30 minutes later I was escorted to the OR. At Sloan you walk to the OR on your own. Its kind of cool because you can see the whole room and everything in it. You also get the opportunity to chat it up with the staff before the anesthesia does its job. "Here comes the sedative Mr. Barber". At this point I was out.

Next thing I remember is waking up briefly while the NG tube was being pulled and the docs hurriedly putting me back under. I was then placed in the recovery room to get the pain under control. I was in and out of consciousness and asked to see Sandy, my Dad and my brother Ed. I forgot to mention that both my Dad and brother Ed were able to make it down on Thursday to spend the day with Sandy. It was nice to see them and we joked a bit when I was awake. Like the last time I had to wait a while for a bed to come available. Finally around 9 PM a room was tagged for me and it was a private room to boot. Since we didn't ask for a private room we can't be charged for the room. I settled in with Sandy and on came the pain. I was on the "button" (self administered pain meds) which was programmed to deliver a dose of hydro morphone every 30 minutes. At this level I was still experiencing alot of pain and they modified the timing to allow for a dose every 10 minutes. This was the ticket and the pain became more manageable. Sandy left for the night and I was off to dream world.

Friday morning Dr. Temple stopped in to see how I was doing and to give me the rundown on the surgery. Sandy was filled in and I'm sure she told me all about it the night before but at this point I had no recollection of what happened to me. She told me that my intestines were reconnected and back to the way they were. She told me to go slow with food and not over indulge. This was advice that I heeded due to my prior surgical experience where I over ate early in my recovery and ended up with a NG tube up my nose and down my throat for 3 days. I wasn't going to have that again so I took it easy. She told me that I should expect my bowels to move in a couple of days and that I may or may not have control over them. She commented that my hernia was one of the biggest she'd ever worked on and that that procedure would cause me the most pain. She said she really had to tug and pull to finally get everything back in place and sewn up. I didn't see Dr. D'Angelica but Sandy did and she relayed his report. He said that overall the liver looked good and that the fuzzy spot on the scan was toxicity damage that was on the mend. He also noted that there were still tiny spots dispersed across my liver but they all appear to be scar tissue. He biopsied 1 and we'll get the results on the next visit. So all and all the surgery was a success.

Saturday morning I was up and out of the bed sitting in a chair. I walked a half mile around the hallways before breakfast. Sandy came over around 9:30 and spent some time with me after lunch I was nodding off pretty frequently so Sandy decided to head back to her hotel for a nap too. I was laying there when all of a sudden I had a feeling that I have not felt in a long time came over me. The plumbing is working as it should again.

Sunday was a relaxing day. Sandy and I spent some time out on the roof top deck Sloan has for patients. Nice view of the Chrisler building and good meeting place. I found it to be a good spot for a nap.

Monday was a good day. Onward and upward to bigger things now. Sandy decided to check out of the hotel and take up camp in the hospital room. We found a convertible chair and had it moved to our room. Monday was also the day my brothers came to see me. My brother Jim met Michael in Woodbury and Mike drove into the city. They got in around 11:30 and hung out with me for a bit and chatted it up. Mike was getting hungry so Sandy and the guys went out for lunch. I took a nap... They came back and hung out for a while then had to leave in order to stay ahead of traffic on the GW bridge. It was nice to have Sandy in the room and we were treated to a mother nature light show that evening as a big thunderstorm passed through the city.

Tuesday my goal was to eat regular food and get discharged Wednesday. Dr. Temple came by and gave the green light for discharge. I spent the rest of the day going around saying my goodbyes and thank yous to all the staff and fellow patients I met. I was lucky to meet some really good people while I was there at Sloan. My nurse Glendacy was awesome. She was very caring and her 20 years experience at Sloan impressed me. The nurse's aides were all very good too they were all friendly and professional. I met a nice guy from Brooklyn named Louis. He was in for his third recurrence in 25 years. Tom was a young guy around 30 who had a colectomy (total removal of the colon) due to a colonoscopy the revealed over 400 polyps that were pre cancerous. Despite his condition he was very upbeat and felt as though he dodged a bullet. Then there was Luke. He was back again after a recurrence. He was quite a nice guy and a real fighter.

I have my followup on Wednesday this week where I'll get my staples removed and discuss any other followups. I also have a appointment with my oncologist to have a conversation about the game plan going forward.

Thanks to my family and friends who helped out and supported us with this last trip and to all who continue to support us. You all are the best!

Monday, August 30, 2010

Good news!

Last week at Sloan I had a CT scan done. The results came back good and my oncologist told us to make an appointment to see the surgeon to discuss liver resection. The surgery is what we have been anticipating since we started this regimine. The chemo is rough but all in all its not been that bad.
So today was the day I went to see the surgeon and the news was better than we expected. He basically told us that there was nothing he could resect. The tumors that started out at 3CM are now so small that they are not measureable. In other words I have had a complete response to the chemo. The disease is jsut about all gone. Remission!!! The news was not what we expected as we were sure I'd be getting a liver resection. I for one am glad that I won't have to endure that surgery. I will however be scheduling surgery to take care of a few residual things from the last surgery. Nothing too serious and not much to worry about.
First, I want to thank the Lord for answering the prayers. I want to thank everyone who has kept me in their thoughts and prayers. Please keep them coming it really works. I especially want to thank my wife Sandy for all that she has done and continues to do to get us through this journey. You inspire me with your dedication and perseverence. I love you! I thank my daughter Olivia for bringing happiness into each day. You are my little angel. I love you too!Thank you to my health care team for giving me the best care. Thanks to evryone at Treo for all the support you give.
Thank you, thank you, thank you...

Tuesday, August 3, 2010

A little R & R

Just back from vacation. We spent the week up north on Schroon lake. Our friend Lauren's family has a place right on the lake. Sandy's friends Amy and Heidi joined us for the week as well. We had great weather all week. The heat of the city was not present as cool breezes off lake were always present. Olivia and I went kayaking together a couple of times and she really enjoyed being out on the water. I was really nice to catch up with everyone. It is not often we are all together like we were. I felt really good all week probably due to the fact that I took a partial treatment the week prior. I ended up getting the HAI pump filled and taking an IV of Avastin. No 5FU which is what usually gets to me.
While we were up north we took Olivia to the Great Escape. She had fun and let us know that she'd prefer to go to Hoffman's instead. Despite that she rode with Cinderella in the pumpkin coach. Went on all the rides in Looney Toon village, had a good time in Wiggles land and caught the stage show there as well.
This week I have treatment in Albany and the next trip to the city has me scheduled for a CT scan. This scan will determine whether or not I go to the tumor board for surgery consideration. I am very confident that I will be in surgery for the liver resection some time this fall. Please keep me in your thoughts and pray that I get there. It is the cure!
I want to thank Sandy and Olivia for giving me so much love and joy and all my family and friends for their support and prayers. Thank You.

Thursday, July 1, 2010

The people you meet.

The last time we were down to NYC I noticed a guy walk past me at the subway station who had the same 48 hour infusion pump on his hip as I did on mine. We arrived at our station stop and began the walk to Penn Station. As we were walking up to Penn I again noticed the same guy with the pump. I held mine up said hello and shook his hand. I wished him well on his journey and parted ways. We had a nice train ride home. When we got to our car in the garage parked right next to me was the same guy I had bumped into earlier. Ends up he has the same thing I do, he goes down to Sloan on the same schedule as me and, he has a passion for camaros. He was driving a clean 80;s Z-28. It was very bizarre that this guy was parked right next to me. He shared his story with me and he's survived over 10 years and is facing a recurrence. His prognosis is good. I told him my story and afterwards we agreed to look for one another in the future. I have to say he was a very positive person who has lots of good energy. I'm looking forward to seeing him again. Funny how the universe works...

Thursday, June 24, 2010

June Post

It's been a while since I posted something so here goes.

Olivia had a great princess birthday party complete with a real princess entertaining the kids. My niece Vanessa dressed up as a princess to entertain the kids it was a big hit. Thanks Vee! Sandy really put on a great party and everyone had a good time.

We have been alternating my chemo treatments between Albany and NYC. It has been working out OK. A few bumps in the road but I think we have things Ironed out now. At the end of May I had a cat scan done that showed terrific shrinkage of the tumors in my live the 3 big ones are now sub centimeter in size and it appears the all the tiny ones are gone. My Oncologist recommended 3 more months of chemo and then send me to the surgeon to discuss resection. Resection = the CURE! That was some welcome news. I can’t express how happy, excited and ecstatic we were to get this news. He also told me that I have developed a hernia but who cares. I’m going to beat this and besides when I go for the resection they can fix the hernia while they’re in there and do the takedown on my ostomy. A 3 for 1 operation.

I have been feeling pretty good generally. Last week I hit a rough patch and had some toxicity effects from the 5FU. Typical stuff that I have experienced in the past so it was no surprise. I march on as I can see the finish line.

I have to express gratitude and love to everyone. Sandy my wife deserves the biggest thank you for all she does and she picked up the best Father’s day gift (a Dustin Pedroia Red Sox shirt). Thanks to my Mom and Sandy’s Mom for all their help that they give us. Olivia really loves spending time with you guys. Thanks to all my doctors and nurses whose expertise has gotten me to where I am today. To all my family, friends and neighbors for the love and support that you give freely. I thank you one and all. Thanks to my employer whose continuing support I truly appreciate. Thanks to Sister Patrick for keeping me in your prayers. Most of all thanks to the Creator for prayers answered.

Love and Gratitude to all.

Thursday, May 6, 2010

May Update

Treatment continues to go as planned. We have made arrangements to get treatment in Albany once a month. Our new doc in Albany used to work out of Sloan and knows our doc down there and they are collaborating now. It is nice to know that we have someone local now we can go to should the need arise. The treatments in Albany are a little different than at Sloan. In Albany they drip the chemo at a slower rate which means more time in the treatment suite however it beats a 5 hour round trip train ride. I have a scan scheduled for the end of May. My doc is still confident that we will get to resection soon. I know that I will get there!
Life on the home front has been great. Olivia is growing up fast and turns 3 on May 22. Sandy has been planning a princess themed birthday party for her. The boys will be Knights and the girls Princesses. We're even going to slay a dragon. Sandy continues to be the greatest CEO and Queen of everything good. I love her greatly for all she does and I'm very grateful to have such a loving, caring and kind wife.
Work is going along well too. I feel so lucky and grateful to have such a great job. Everyone I work with is supportive and understanding.
I want to extend my gratitude to everyone who reads my blog and keeps me in their thoughts and prayers. Thank You...

Sunday, April 4, 2010

Happy Easter

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...

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!

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.

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.

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.