Tuesday, July 12, 2011


My brother has a family BBQ every year and this one was no different. Mostly its family and friends but this year was special. My brother had me invite a bunch of my old and new friends which was really nice because I was able to see everyone in a single visit. In addition to that my brother surprised me with a lot of folks from the old neighborhood. I felt like a celebrity sitting in my lounge chair. Chatting it up with people I haven't seen in years was really great as well as folks I see on a more regular basis. My brother put out one helluva spread of food. It was all yummy good. We stayed until dark and watched the fireworks show put on by my little brother Michael. It was awesome! Olivia loved the show and the day. She spent all her time playing with her friend Gracie and was often spotted running around hand in hand with each other. It was too cute. It was a long day and I slept like a baby when I got home. The party was great and I had a really great day.

Sunday we were surprised to find out that our neighbors got together and made a calendar outlining who will do chores like mowing the lawn. We were really taken a back by this generous gift. We really need the help at this time as I can't do the things I'd like to do any more and Sandy certainly has her hands full taking care of me and Olivia. We can't express enough gratitude to such a wonderful group of caring people. Thank You All!

The TPN seems to be working well. I have been gaining weight and my strength is slowly coming back. We met with my oncologist today and he was quite impressed with my physical being. We discussed pain management and he was able to give me a new script for the same medicine but in capsule form. This will enable my body to absorb more of the medicine and reduce my pain levels. So far it appears to be working. We have a couple more appointments later in the week. The important one will be with the nutritionist on Thursday.

Wednesday, July 6, 2011

Next Steps

Well I'm still here and wanted to let you all know what is going on with me. I have been on this weight loss slide for a couple of weeks and went to see a nutrition doctor last week. She is out of Albany Med and is very nice as well as her staff too. She recommended that I try a therapy called TPN which stands for Total Parenteral Nutrition. Its basically all the nutritional needs delivered via IV over 12 hours each night. I don't have to eat anything the traditional way which is good because that will reduce the output on my self made ostomy and hopefully I won't have to deal with so many leak accidents. In other words I'll be able to leave the house with confidence. A huge relief. Today is the fourth day of TPN treatment and things are going along well. My body is accepting it and showing no negative signs. I just got word that I'll be getting lipids in my infusion tonight. Basically fats so maybe I'll gain some weight back. So that's the medical side of things.

My new job as Chief Relaxation Officer is working out well. I have been spending lots of time in my new office (my hammock by the pool) watching my girls enjoy our new pool. We had our final inspection today and everything passed with out any issues. Our friend and neighbor built a deck for the pool and that came out great. We went with a composite deck board that is grey in color and it ended up matching the pool's walls. I am so grateful that my Mom was able to take Olivia overnight as we had new carpet installed throughout the whole house. It came out nice and Sandy did a fabulous job picking out the colors and style. 3 guys spent the day here installing the carpet. They arrived at 9 and left at 3. Done and done.

Overall I'm feeling really good and I'm looking forward to the my brother's BBQ picnic this Saturday. Even though I won't be eating anything. I'm also looking forward to rest of this week and the sunny weather.

Thanks to everyone in my life. I love you all!

Saturday, June 25, 2011

Not What I Expected...

Back in April we switched treatment protocols because the FOLFOX was not working and to top it off it was making me sick and generally kicking the crap out of me. I didn't really get why it wasn't working because FOLFOX did a great job back when I was first diagnosed over 2 years ago. I asked my doctor about this and he said the disease gets smart and develops an immunity to the drug and apparently that's what happened to me. Luckily we had another hand we could play and we switched protocols over to FOLFIRI.

The FOLFIRI was more tolerable for me at first however things started to go south. Each treatment made me feel worse and worse. I used to be able to recover from a treatment in 5 days then with each treatment it seemed to take a day or 2 longer. I was also developing a fluid build up in my abdominal cavity that was an artifact of the disease in that area. This would cause my belly to become distended and was quite uncomfortable and really killed my appetite. My doctor prescribed what is called Paracentesis. This procedure was quite easy to endure and the relief it provided was well worth it. The procedure is outpatient and takes less than 4 hours. The actual procedure takes about 30-40 minutes depending on how full you are however there is the paperwork phase and then preparation with the nurses and then about 90 minutes to recover because they hit you up with Fentanyl to relax you. So they wheel you in the room, ultrasound your belly to find a fluid pocket, give you a local at the puncture site and finally poke a needle through and start draining. The first time I did this they drained out 4.2 liters of fluid. A week later I was full again and they drained off 3 liters. Subsequently the frequency in which I needed a drain was increasing however the volume of fluid was decreasing.

After the 5th treatment something happened. Treatment was on Monday morning and everything went well. I needed to be drained so they scheduled an appointment for that afternoon. I wasn't out of the hospital until after 5PM and logistics prevented me from being hooked up to the 48 hour 5FU infusion. I wasn't feeling great and went to bed early. I woke up at 2AM with the worse pain I have ever felt. I tried taking pain killers (lots of them) to knock me out but I started getting sick and was unable to keep anything down. In the morning it was off to the ER at Albany Med where we spent the next 12 hours. They did the full battery of tests from blood work to a CT scan. I must have seen about 100 doctors all giving their opinions. The CT scan showed a partial blockage on my small bowel which was reason enough to keep me there for observation. I got to my room around 9:30 PM and met my care team for the evening. My doctor came by to see me and I asked him what my prognosis was. He told me that the disease was progressing and the treatments were no longer working. I was out of options. Strangely I felt a sense of relief pour over me. The chemo hell was over. No more feeling sick and fatigued. I would be able to say yes to my daughter when she asks me to play with her. Perhaps a some what normal life. Sandy and I had a good cry together as we pondered our future. I knew that I wanted to leave work and spend all my time with her, Olivia and our family. I am at peace with this decision and have no regrets. Time to live and enjoy life.

The nurses came back and told me that they were going to insert an NG tube which is torturous. An NG tube is a vinyl tube that they snake down to your stomach via your nasal cavity and throat. It is very unpleasant placing an NG tube. The nurses and I set out to get the thing in place. After a couple of tries we finally got it in place. Unfortunately there would be no food or drink for me while the tube was in place. Ice chips became my creature comfort. The nurse was nice enough to get me a lemon wedge so I could at least have some flavor in my mouth. The next day they did another abdomen drain and soon I was feeling better. They allowed me a clear liquid diet. Mmmmmm clear chicken broth, lemon jello, and tea. The tea was the best when I iced it. I worked with that diet for a day with tube still in place but not hooked up to the vacuum. I was able to keep the clear fluid diet down with out any complications. I asked for the tube to be removed. The resident doctor came to my room and warned me that if I was to start getting nausea or vomiting I would have to have the tube placed again. I was willing to take the chance because the tube in my throat felt awful. I really wanted solid food as my stomach was really grumbling profusely. My dinner tray arrived you guessed it, clear liquids again. Unfortunately like a naughty boy I was sent to bed without a real supper. The resident told me that he would recommend a normal diet for me. 6AM rolled around and the doctors began making their rounds each one telling me that I could have a normal diet. I asked the nurse for a toasted bagel with cream cheese. That's all I really wanted. Oh yeah and a cup of coffee. I could see the food delivery cart in the hallway and soon enough the guy brought in my tray. You guessed it clear liquids. I complained about this and asked to see the resident. He explained that all the doctors who said I could have solid foods didn't have the authority to grant me that pleasure. I would have to wait for the attending physician to sign off on my chart. At least they gave me coffee on my clear liquid tray. As I was sipping my coffee another tray appeared this time with real food and more importantly a toasted bagel with cream cheese. My wishes had been heard and were granted. I was on the up swing! I had a good day with lots of family and friends coming by to visit me. I kept asking if I could get out by or o Sunday so I could be home for Father's Day. The doctors were all giving me the "let's see what happens". Saturday rolled around and things were looking good. I was keeping food down with any problems and I was feeling a lot better that I did when I first arrived. At this point they decided to let me go home.

I was home and started to feel tired and ended up passing out for the afternoon. The next day wasn't much better and that's when I realized that perhaps I had narcotic hangover. A little to much IV pain killer and a Fentanyl patch can do that to you. I removed the patch and gradually started feeling better. By Tuesday I was on my feet again and have been feeling really good. Spending time with my girls has been great and very therapeutic. I'm looking forward to spending lots more time with them doing stuff.

I am currently working through an issue but it seems to be OK and something we can deal with going forward. I'm feeling the best I have in a long time, a really long time and again looking forward to spending time with all my family and friends. Please be happy for me...

I'll keep my gratitude list short and simple:

Thank you one and all for all you have done and what you will do for me and my family. Lots of love to everyone.

Until next time...

Friday, April 15, 2011

I'm back...

I know I have left alot of my blog followers hanging after the last post way back in January and for that I apologize. Since then I have been enjoying my life and spending time with family and friends. Most of all spending quality time with Sandy and Olivia. I have been keeping busy working my job. I really do love my job and find it very therapeutic. It keeps my mind busy and focused on something other than my current situation. Treo has allowed me to work from home which has been really great. This gives me more time with Sandy and Olivia. So in general all is good with the family.

On to the news at hand... So as I explained in the last post the scan we had done back in December showed disease progression. At that point my oncologist at MSKCC had announced his resignation. Prior to leaving we had one last appointment with him and it was decided that we would switch chemo protocols and see what happens after 6 rounds. The first round went OK but after that things kinda went down hill. The second round I went through resulted in me spending 2 days in the hospital. The doctors seemed to think that I may have had an infection of some sort however that was not the case. The third round resulted in the same reaction. This time I ended up getting 2 shots of Demerol in the clinic and calm the body tremors I was experiencing. After a couple of hours they sent me home. At that point it was determined that I had an allergic reaction to the chemo and in order to ward off the reaction I was given a high dose of steroids prior to all future treatments. This worked and I had no problems moving forward. After the 6th round we scheduled a scan down in NYC.

So we just got back from the city last night with the fresh scan results. The results were not the best. The scan showed that the disease had progressed albeit slowly but not something to take lightly. My new oncologist at Sloan is really great. She spends lots of time with us and answers all our questions using language that we can understand. We saw her yesterday and it was decided that we will switch chemo protocols. I will undergo 6 rounds of the new chemo and then have another scan after the 5th round. This protocol is what I was on prior to having surgery. It really worked well the last time and I'm hopeful that I'll see the same this time. So that's my story.

I really appreciate all the support that my family and friends have given me. I am very grateful to have such wonderful people in my life, especially my wife Sandy and daughter Olivia. They are the reason I drive forward and continue to fight. I will not give up!

As always her is my gratitude list:
Sandy - Thanks for all your love and support. I know it's not easy. I love you!
Olivia - Thanks for all the love, joy and happiness you give me. I love you!
Mom - thanks for being there when we need you. I love you!
Dad - thanks for being there too. I love you!
The rest of my family - You guys are the best. I love you all!
Treo - Thanks for all the support you have given me. I can't express enough gratitude. Thank You!
All my friends - Thanks for the encouragement, kind words, and support. It means so much to me. I love you all!

I will try to be more active with this blog going forward so I don't leave guessing. I have a big lump in my throat that I have to take care of. Until next time...

Friday, January 7, 2011

WTF? Like a bad penny...

A lot has happened over the past 17 weeks for one I was off chemo and believed that the cancer was on the ropes. Back in August the doctor ordered a CT scan that showed the liver tumors were ”invisible”. At that time I decided to have my temporary ostomy reversed and get a hernia fixed. Surgery was scheduled for early October. Sandy and I were off to NYC for a week. Everything went great with the surgery and I was soon home (see earlier post). 3 weeks after getting home an infection set in on the incision site and I was back in NYC for an emergency visit to the hospital. The incision was reopened and the doctor ordered IV antibiotics for 3 days. We decided that Sandy would stay home and my mother would go down to NYC with me this time. I expected to be there for the day and never thought I would be admitted as an inpatient. My mom had nothing with her to support a 3 day stay in NYC, so I called my dad and asked him to bring down clothes, meds etc for a couple of days. Mom and Dad stayed at Miracle House. Sunday rolled around and the docs sprung me from the hospital. I was back home in time to take Olivia trick or treating on Halloween.
The next couple of weeks were dedicated to recuperating and spending time with my wife and daughter. We had a great Thanksgiving filled with good times spent with family and friends. The first week of December found me back to work. Christmas was wonderful. It was the first year that Olivia really understood who Santa is. We were again surrounded by family and friends for a yummy Christmas dinner hosted in our home. Everyone had a good time. The New Year came and went with out much fan fare…
Right before Christmas I had an appointment down in NYC with my surgeon and oncologist additionally I had a CT Scan done. My last scan was back in August and showed that the cancer was in remission. I waited until after the holidays to schedule an appointment with the oncologist to hear the results of the scan. I also found out that the oncologist was leaving Sloan Kettering and I would be working with a new person.
On to the scan results – Not Good! Booo hisss booo hisss. The cancer is back and is on the move. 2 new tumors on the liver, 2 in my abdominal cavity, and some new stuff in my lungs. The prognosis I was given is good. Go back on chemo and see what happens. I’ll be doing the treatments locally in Albany and will avoid the travel back and forth from the city. The doc told me that since I’ve had great response to chemo in the past that there is no reason why we shouldn’t expect the same going forward. I did it once I did it twice and I’m sure that the third time will be the charm.
I have to express my gratitude to everyone in my life and will call out some in particular…Sandy is the best wife a guy could ask for and I’m recommending her for sainthood. Thank you Sandy for all you’ve done and will do for me. My mother who watches Olivia when we are away dealing with this dreaded disease. We owe you a lot. Thank you Mom! My Dad and all my brothers are great and give me unconditional love and support Father Tom and the community at Saint Clare’s for the spiritual support and many prayers. My Uncle Bill who has so many people around the world praying for me and my healing. Your faith is inspirational. Thank You. to my employer Treo and all my coworkers I can not express enough gratitude for the flexibility that you afford me. I couldn’t do this with out you. Thank you! To my care team and most of all my nurse Heather, your compassion and care is the best. Thank You! To all my friends and neighbors who have come through with help at all the right times I thank you from the bottom of my heart. I have to again thank my wife Sandy. I love you and our little girl with all my heart. I don’t what I’d do with out you 2 to motivate me to move forward and stay positive through out all of this. I love you more today than I have in all the past days combined.
OK so that was worse than an Oscar acceptance speech but whacha gonnadoo.

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...