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.