tag:blogger.com,1999:blog-28367216083647005362024-02-20T10:37:59.790-08:00Not what I expectedStories from a colorectal cancer survivorShawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.comBlogger54125tag:blogger.com,1999:blog-2836721608364700536.post-71860570889630503512011-07-12T16:37:00.000-07:002011-07-12T17:51:16.508-07:00ReunionMy 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. <br /><br />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! <br /><br />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.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-91503487853144519992011-07-06T11:31:00.001-07:002011-07-06T13:59:56.989-07:00Next StepsWell 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.<br /><br />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.<br /><br />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.<br /><br />Thanks to everyone in my life. I love you all!Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com2tag:blogger.com,1999:blog-2836721608364700536.post-87793375514269505772011-06-25T12:47:00.001-07:002011-06-26T01:20:58.119-07:00Not 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.<br /><br />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. <br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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...<br /><br />I'll keep my gratitude list short and simple:<br /><br />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.<br /><br />Until next time...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com3tag:blogger.com,1999:blog-2836721608364700536.post-37240307888858493372011-04-15T07:12:00.000-07:002011-04-15T17:55:30.533-07:00I'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.<br /><br /> 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.<br /><br /> 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. <br /><br /> 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!<br /><br />As always her is my gratitude list: <br />Sandy - Thanks for all your love and support. I know it's not easy. I love you! <br />Olivia - Thanks for all the love, joy and happiness you give me. I love you!<br />Mom - thanks for being there when we need you. I love you!<br />Dad - thanks for being there too. I love you! <br />The rest of my family - You guys are the best. I love you all! <br />Treo - Thanks for all the support you have given me. I can't express enough gratitude. Thank You! <br />All my friends - Thanks for the encouragement, kind words, and support. It means so much to me. I love you all! <br /><br />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...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com2tag:blogger.com,1999:blog-2836721608364700536.post-49145142404815987902011-01-07T17:09:00.000-08:002011-01-07T17:12:38.606-08:00WTF? 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.<br />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…<br />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.<br />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.<br />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.<br />OK so that was worse than an Oscar acceptance speech but whacha gonnadoo.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-23350997424261569052010-10-17T12:44:00.000-07:002010-10-18T07:40:44.885-07:00Time 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.<br /><br />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...<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br />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.<br /><br /><br /><br />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.<br /><br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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!Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-78488838675605706692010-08-30T18:31:00.000-07:002010-08-31T06:33:38.393-07:00Good 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.<br />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.<br />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.<br />Thank you, thank you, thank you...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com3tag:blogger.com,1999:blog-2836721608364700536.post-91622765297001090262010-08-03T17:02:00.000-07:002010-08-03T17:11:29.698-07:00A little R & R<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSyl-c-6nmd9WxUVenJDVb8k3Gk42-8X1nGEqHmiELydIRa5A7AmDOS-0SdflFDtwp4PLvCpoAxBXLA2re29u58YYJnyDgpSkxv1hh5TguKNE7mDHMLfOxq7ugB6PxhBHffwPmbVubozk/s1600/Picture+024.jpg"><img id="BLOGGER_PHOTO_ID_5501340439733700706" style="WIDTH: 320px; CURSOR: hand; HEIGHT: 240px" alt="" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSyl-c-6nmd9WxUVenJDVb8k3Gk42-8X1nGEqHmiELydIRa5A7AmDOS-0SdflFDtwp4PLvCpoAxBXLA2re29u58YYJnyDgpSkxv1hh5TguKNE7mDHMLfOxq7ugB6PxhBHffwPmbVubozk/s320/Picture+024.jpg" border="0" /></a><br /><div>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.<br />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.<br />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!<br />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.</div><br /><div></div>Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-18568823525785339132010-07-01T17:16:00.001-07:002010-07-01T17:32:50.592-07:00The people you meet.<span style="font-family:arial;">The last time we were down to NYC I noticed a guy <span class="blsp-spelling-corrected" id="SPELLING_ERROR_0">walk</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_1">same</span> 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 <span class="blsp-spelling-error" id="SPELLING_ERROR_2">camaros</span>. 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_3">recurrence</span>. His prognosis is good. I told <span class="blsp-spelling-corrected" id="SPELLING_ERROR_4">him</span> 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 <span class="blsp-spelling-corrected" id="SPELLING_ERROR_5">has</span> lots of good energy. I'm looking forward to seeing him again. Funny how the universe works... </span>Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-92142843812897922822010-06-24T18:55:00.000-07:002010-06-25T05:02:57.558-07:00June PostIt's been a while since I posted something so here goes.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_0">Vee</span>! Sandy really put on a great party and everyone had a good time.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_1">takedown</span> on my <span class="blsp-spelling-error" id="SPELLING_ERROR_2">ostomy</span>. A 3 for 1 operation.<br /><br />I have been feeling pretty good generally. Last week I hit a rough patch and had some toxicity effects from the 5<span class="blsp-spelling-error" id="SPELLING_ERROR_3">FU</span>. Typical stuff that I have experienced in the past so it was no surprise. I march on as I can see the finish line.<br /><br />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 <span class="blsp-spelling-error" id="SPELLING_ERROR_4">Pedroia</span> Red <span class="blsp-spelling-error" id="SPELLING_ERROR_5">Sox</span> 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.<br /><br />Love and Gratitude to all.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-30325730225942210862010-05-06T07:44:00.001-07:002010-05-06T18:30:09.093-07:00May UpdateTreatment 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!<br />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. <br />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.<br />I want to extend my gratitude to everyone who reads my blog and keeps me in their thoughts and prayers. Thank You...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-28435787169759308992010-04-04T05:27:00.000-07:002010-04-04T05:34:46.883-07:00Happy EasterHappy Easter everyone...<br /><br />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. <br /><br />I hope everyone has a Happy Easter and a great spring.<br /><br />Love and gratitude to all...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-557116227822618092010-03-20T12:57:00.000-07:002010-03-20T13:10:39.403-07:00Back in the SaddleWe 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. <br /><br />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....<br /><br />Thats all for now!Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-44470381325348135242010-03-13T05:58:00.000-08:002010-03-13T09:39:30.628-08:00Bump in the roadIts 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! <br /><br />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. <br /><br />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.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-56364080568716119622010-01-21T16:54:00.001-08:002010-01-30T05:19:54.513-08:00The people you meetWent 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. <br /><br />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. <br />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.<br />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.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-30924027765333487122010-01-15T13:06:00.000-08:002010-01-15T13:27:44.481-08:00It'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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.<br /><br />Thanks for all your prayers and support.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-55111321958391756162009-12-29T08:18:00.000-08:002009-12-29T16:22:10.686-08:00Merry ChristmasChristmas 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.<br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7frFEHyu99ATAHwbhi5k_Vhh5ORxlff5OMP39oeEGoqwXkoIQYQO7Boqy0MURs3zApAlUGqU2q8ClJucYCUk41xhxQ88uA_RoOWJWcQrr8uekdf4z4X_CupSeVj3Pl3xu1NfMbh3mll4/s1600-h/Picture+004.jpg"><img style="cursor:pointer; cursor:hand;width: 240px; height: 320px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7frFEHyu99ATAHwbhi5k_Vhh5ORxlff5OMP39oeEGoqwXkoIQYQO7Boqy0MURs3zApAlUGqU2q8ClJucYCUk41xhxQ88uA_RoOWJWcQrr8uekdf4z4X_CupSeVj3Pl3xu1NfMbh3mll4/s320/Picture+004.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5420817440434879890" /></a><br /> The whole area was decked out with great displays of the Christmas season. <br /><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpaRuBdglvRauoCwd5-ektzxlxmaHE54eNjRqern7oX_bKAiVMTujMHsyFvS3o7iRhwhYkq2Cho0w_E6O3SPZiCKWQFHglopzacx_c78nxYhLpTjqd58Iyo_kWue8K8Xzf9TWHWVD30Lg/s1600-h/Picture+011.jpg"><img style="cursor:pointer; cursor:hand;width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpaRuBdglvRauoCwd5-ektzxlxmaHE54eNjRqern7oX_bKAiVMTujMHsyFvS3o7iRhwhYkq2Cho0w_E6O3SPZiCKWQFHglopzacx_c78nxYhLpTjqd58Iyo_kWue8K8Xzf9TWHWVD30Lg/s320/Picture+011.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5420817780815981410" /></a><br /> 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.<br />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.<br /><br />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.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-50241212244837728192009-12-14T15:42:00.000-08:002009-12-14T16:04:31.948-08:00Off 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.<br />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. <br />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. <br /><br />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!Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-35794638305579181432009-11-28T16:59:00.000-08:002009-11-28T17:14:11.134-08:00ThanksgivingI had a treatment scheduled for Wednesday, yes that Wednesday the one where everyone is traveling. We boarded the crowded 8:05 to NYC and off we went. Al was well until we reached Yonkers and the conductor announced that there was a derailed train on the tracks and we could go no further. Many folks on the train were a little PO'ed about this as they were going to miss connections etc. They off loaded everyone and an MTA train took us to Grand Central. We arrived at about 11:35 and we quickly got a cab over to the clinic. We made the appointment in time and the doc actually saw us on time. I guess he wanted to leave on time too. The treatment went well and I had very little side effects this time around. We booked the 8:50 to Albany because all the earlier trains were sold out. We were out of the clinic by 4:00 and went to dinner at a Peking Duck House down the street. After dinner we headed over to the station to wait for our train. We tried to get on the 7:15 but the ticket agent told us no shot. So we waited...and finally got home at midnight.<br /><br />Thanksgiving day was great. We went to my brother's place for dinner. It was good to spend time with the family and friends. Everyone was well fed and happy at the end of the day.<br /><br />I am thankful for a loving and supportive wife, a healthy and sweet daughter, an awesome and caring family, a professional and knowledgeable health care team, a great employer and so many great friends. Most of all I am thankful for being on the right road and with every one's help and love I know I will be able overcome any challenges thrown my way. HAPPY THANKSGIVING TO ALL!Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-83263598128136564552009-11-14T06:03:00.000-08:002009-11-14T06:20:45.228-08:00Back in the SaddleI was back in NYC on Wednesday to see my onc and a follow up with the surgeon. This is the second visit with the onc and he always runs about 2 hours behind. So there we sat and waited...<br /><br />The visit went well my blood work came back good which meant that I was cleared to get systemic chemo. I had to insist that I not get Avastin because my wound is still healing. We then meant with the nurse who gave us the run down on the side effects and other stuff that the drugs may or may not do to me. Then it was off to see the surgeon. She gave me a good report on the wound and the healing. Back to wait for the infusion nurse to call us. <br /><br />I sat down in the infusion suite. Very nice and private cubicles equipped with many creature comforts. My infusion only takes 1 hour or less. Then I am sent home with a 48 hour pump. The pump they use at Sloan is different than the electronic one I used to have prior. The Baxter pump is gravity fed and much more light weight and quiet. I hardly knew it was there. That is until it was disconnected and I felt like a truck ran me over. The 5FU really does a job on me. I can't say I missed chemo for the 3 months prior to surgery. <br /><br />My plan is to return to work in a couple of weeks. Thanks to everyone for your continued support, thoughts and prayers.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-22506177034656069572009-11-06T16:26:00.000-08:002009-11-06T16:34:03.113-08:001 month post opIt's been just about a month post op now and I'm doing well. I have had the HAI pump filled with chemo and haven't had side effects. At least none that I have felt or noticed. I have been feeling pretty good nd I plan to return to work in about 3 weeks (after Thanksgiving). Next week we head down to Sloan for another followup with the surgeon and posibly get a systemic chemo treatment. I'll let you all know how I made out when I get back.<br /><br />I want to thank everyone for your continued support through your thoughts and prayers. I am very grateful to all...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com0tag:blogger.com,1999:blog-2836721608364700536.post-33718721481905835362009-10-29T12:19:00.000-07:002009-10-29T13:39:12.319-07:00Follow up followed by another follow upThis was the week of follow up appointments. We booked the 12:05 Amtrak on Monday and it was a beautiful ride on a sunny fall day. The riverside was painted in fall colors and the Canada geese were plentiful. We arrived on time and took a cab over to the E. 53rd St. facility. We were early and sat down and waited our turn. Our appointment on Monday was with Dr. D'Angelica the pump surgeon his nurse was the first to see us and she proceeded to remove the ~40 staples that held my incision together. What a relief that was. They were really starting to itch and were pulling at my skin. Dr D' Angelica came in and told us that everything was great and that the pathology report was back. He told us that he found a lymph node near the liver that was suspicious and removed it along with a few others. The one node came back positive. He told us not to be overly concerned about it. As it turns out the node in question was actually discovered after my last CT scan here in Albany. At any rate it's out of me and we'll have to be attentive about it. Dr. Tall who followed me while I was in the hospital popped in to say hello too.We wrapped it up and headed over to the hospital for a PET and CT scan. We had some time before the scans so we went up to see a friend who had the pump implanted last Friday.We visited a bit then it was off to scanapolooza. PET scan at 6. Injected with radioactive stuff and drink a liter of contrast. Wait an hour and then on the table being scanned for 20 minutes. Next up the CT scan at 8PM. First thing they do is stick an 18 gauge needle in my arm. Its a huge needle so they can get a high flow of contrast into me. Needless to say it's not the most comfortable thing and to top it off they wanted me to drink more contrast to which I politely told them that I was not drinking another drop. The scan went well and we were out of there. Off to Penn to catch the 10:50 back to Albany. We got home at 2AM and hit the sack. No appointments on Tuesday.<br />Wednesday we had more appointments scheduled with Dr. Chung and Dr. Temple. We also were scheduled to have an EKG prior to seeing the docs. We took the 8:05 out of Albany and arrived on time at Penn. It was raining pretty good and don't ask me why but I elected to walk up 7th Ave to the Stage deli. It's about 20 blocks and by the time we got there I was regretting the walk and we were both soaked to the bone. We ordered hot tea and had a corned beef sandwich for lunch. We were dried out (almost) when we finished and hopped a cab over to the E 53rd St facility. We went to the 7th floor to get the EKG and was told that the Dr. had cancelled it. No one bothered to call us which kinda pissed us off a bit because we could have taken the later train down and saved a few $. So we went down to wait and see Dr. Chung. We chatted it up with some folks in the waiting room and were finally called in 1 hour later than scheduled. He came in and told us that the lymph node that was found would exclude me from the study that I had originally signed up for however it would not alter the course of treatment. I will receive the same stuff even though I'm not participating in the study. This was actually welcome news because now we have more flexibility in my treatment. Dr. Chung was not overly concerned about the node and basically gave us the same message that Dr. D'Angelica told us. He cleared me to have the pump filled with chemo and placed the order. We then went to see Dr. Temple. We didn't wait long and soon saw the the nurse. She checked out the incision site and re-packed my open wound. Dr. Temple came in and said that everything was progressing better than expected. Dr. Dimples came in to say hello. She was the doc who followed me while I was in the hospital. She told us that her rotation was ending and she would be moving on. We got a clean bill and were on to the last thing we had to do...fill the pump with chemo and start the battle again. <br />The pump is filled via an injection through my skin directly into the pump. It doesn't hurt a bit and took all of 5 minutes to complete. Done and done and we're on our way. We had a nice dinner at an Italian place on the east side and then headed to Penn to catch the 7:15 home. <br />All in all it was good news and we go back on the Nov. 11 for a full treatment.<br /><br />Until next time...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com2tag:blogger.com,1999:blog-2836721608364700536.post-83115058956545936772009-10-24T15:18:00.000-07:002009-10-24T15:58:30.316-07:002 weeks post op2 weeks have gone by since my surgery and things are progressing along well. I enjoyed my 45th birthday this week. Sandy took me out to a local park where Olivia played on the playground. She was so proud to show me all the amazing things she can do on the equipment. She is quite the little monkey climbing, swinging and sliding. It was a real treat to watch her. <br />I have been getting lots of rest and usually follow Olivia when she takes her afternoon nap. I am being followed by a home care nurse due to an open wound that I have. I ended up getting an infection in the incision a few days after the surgery. The docs popped out some staples so it could drain and they told me that it was very common for people who have under gone chemo to get infections. The wound is looking better each day however it still looks like a big hole in the middle of my chest. I think that it would make for a cool Halloween prop. <br />We are going to Sloan on Monday for a followup with Dr. D'Angelica (the pump guy) and then a couple of scans in the evening. I think he'll take the staples out or at least I hope he does. They have been quite itchy lately. We have to go back down on Wednesday for a followup with Dr. Temple the GI doc and our first chemo treatment. They will fill the pump and I'll get a systemic treatment in the clinic. It has been over 2 months since my last chemo treatment. The docs did say that everything looked good when they had me opened up. The docs were also very optimistic that this treatment will have better results than the previous protocol based on the results I had. <br />I will post an update after Monday and Wednesday's appointments. Thanks for all your positive thoughts and prayers.Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com1tag:blogger.com,1999:blog-2836721608364700536.post-45285862450129510872009-10-16T13:40:00.000-07:002009-10-16T14:02:57.949-07:00Fall 7 times but get up 8Hey everyone its Shawn. I am felling better today. The pain has subsided and they gave me food today for the first time in a week. Who knew a banana could be so tasty. The docs are impressed with my progress. I have been walking quite a bit keeping my food down and getting my body rebalanced. <br /><br />I may be able to get home as soon as saturday hopefully no later than monday. <br /><br />Thanks to friends and family for all your prayers and support. A special thanks to my care team here at Sloan. Thanks to Treo for their support. I am very grateful to all the good people in my life...Shawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com3tag:blogger.com,1999:blog-2836721608364700536.post-12171812656369648942009-10-13T13:56:00.000-07:002009-10-13T15:25:59.196-07:00One step forward, two steps backAfter a promising weekend, I walked into the hospital Monday morning to find what looked like Sid Vicious after a good bender. I didn't have to ask, clearly Shawn had not had a good night. He would not have a good morning, afternoon or evening either. By 8 pm an x-ray confirmed that Shawn's internal organs were still groggy from anesthesia and some outside intervention was needed in the form of a nasal gastric tube. Before inserting the tube, the Doctor referred to the procedure as "barbaric"....never a good sign when they admit to it so readily. But alas, she was right... not for the weak of mind or body. <br /><br />Tuesday would be a better day. The NG tube is still in. It adds a little something to the overall patient look...you know, cheap nightclub wristband, gown with bum exposed, skid free socks and now tape and tube to nose. The usual myriad of nurses, fellows, residents and doctors have been in and out of the room today and all agree that Shawn is making excellent progress. It is slow but steady and for that we are grateful.<br /><br />Brothers Jim and Mike and niece, Vanessa, made the long trip to the city today for a visit and to liven up the place. Shawn continued to walk laps around the hospital ward with the family posse behind him. So far today over a mile. <br /><br />Thanks for all your encouragement and love.<br /><br />Guest Blogger~SandyShawnhttp://www.blogger.com/profile/15494196573718470782noreply@blogger.com2