Merry Christmas

Christmas has come and gone. We were down in the city on the 23rd to see the Oncologist. I had a bit of a rough cycle and I was not prepared to undergo another. I ended up with my hands burning. They looked like I dipped them in boiling water. I couldn’t close my hands to make a fist without feeling lots of pain. I was so exhausted and fatigued that I was coming home from work and was in bed by 8 PM for a couple of weeks. The doc told us that it was caused by my liver not being able to keep up with its job of cleaning the chemo out of my blood therefore the stuff was hanging around longer than necessary and hence the side effects. We decided that it would be best to reduce the dosage so I don’t get so fatigued. It’s a quality of life issue. The doctor gave me a script for some medicine to boost my liver which seems to be working. I declined the treatment that was scheduled because wanted to feel good for the holidays and the doctor said that it would not be a problem and wouldn’t hurt anything. He told us "Big picture your doing great, this is typical and you should not worry about it." They filled my HAI pump with saline as scheduled and off we went. We had record time in out in less than 2 hours. We had lots of time before our train home so we went up to 5th Ave. to check out the window displays and to shop some. We stopped at St. Pats and ended up staying for the noon mass. We said a prayer at Ann Seton’s shrine and made our way over to Rockefeller Center to check out the Christmas tree. The tree was very beautiful and it looks much bigger on TV than in real life.

The whole area was decked out with great displays of the Christmas season.

We continued our adventure and found ourselves at the Stage Deli which is one of our favorites in the city. We had a hot coffee and a corned beef sandwich that was delicious. It was around 4PM and we thought we’d try to see if we could catch an early train home. No such luck all the train are sold out going to Albany. Oh well… We ended up at a bar in Penn and sat down to kill 2 hours before our train departed. Sandy had some drinks and I drank water. We met and chatted with lots of other travelers. It was nice to meet so many friendly people. We made it home without any issues and started getting ready for our big Christmas dinner party.
We have been hosting Christmas dinner for family for a couple of years now. So we had lots of prep work to do and by we I mean Sandy. She is the best and really did a great job putting it all together. Olivia was looking forward to the arrival of Santa Claus and her gifts that would be under the tree. We spent Christmas Eve setting up and getting ready for the next day. Olivia was in bed by 8:30 anda slept right through the night. She woke up around 6:45 and wanted to come to our bed and snuggle with us. This is her morning ritual. I asked her a couple of times if she wanted to go down and see if Santa came and she would reply “no not yet, maybe after Blue’s Clues”. Eventually she hopped out of bed and ran down stairs to the tree. We were hot on her tail but she made it there ahead of us and all we heard was “ooooooooo Santa came”. She opened her gifts and liked each one better than the last. She is such a happy kid. We got ready for our company to arrive. Uncle Jim and Aunt Lisa (Olivia’s God Parents) came around noon time. Aunt Lisa had to work so she wanted to see Olivia open her presents. Everyone else arrived shortly thereafter. Olivia took her nap as scheduled and woke up right before we all sat down for ham dinner Christmas feast. We said grace and then went around the table stating what we were grateful for. I started by giving thanks for Sandy and Olivia and all the joy that they bring me. I am thankful for my care team that they are so smart and have the knowledge to lead me to a cure. I gave thanks for my supportive family who is always there for us no matter what. Dinner was delicious and everyone enjoyed the sweets for dessert afterwards. Christmas day was a great time for all.

We are now awaiting the New Year which I pray will be filled with healing and good health. I hope your New year brings you all you ever wanted and lots of good fortune. Until next time.

Off to Sloan in snow storm...

This past Wednesday we had our first (well second) snow storm. We knew it was coming so we got up extra early to get the train. We left our house at 6:50 am and didn't arrive at the train station until 8:15 am. The driving conditions were horrible and subsequently we missed our train. Next train at 10:15. The ticket agent was very kind and gave us the same price for the reissues tickets. He could of charged us and additional $40. Good things will come him I'm sure. So we waited in the train station. Thankfully they have wireless access and I was able to work while Sandy facebooked. We called the office and let them know we were going to be late due to the storm. We arrived in the city at 12:30 and jumped in a cab over to the the office. They quickly drew my blood and then shortly there after I saw my oncologist. "Everything is going along great" he said "from our perspective you are doing great and have nothing to worry about". Nice news to hear. Chemo was prescribed and I was off to see the surgeon for a follow up. She was happy to see the wound and its healing progress. She mentioned that I could consider thinking about the reversal of the ostomy. This is something that I'm anxious to do but I'll have to talk it over with my oncologist. I think that we'll wait and see what happens with the current chemo regimen and if I get to resection then we'll do both procedures in one shot.
I'm back to work now and its been Ok so far. I am very tired by the end of the day and usually I'm in bed shortly after Olivia (9PM). This past treatment was little rough and I spent most of the weekend in bed. I worked from home on Monday. I'm hoping I feel up to going into the office on Tuesday.
We also got our bill for the copay from Sloan today complete with a 20% discount. Totally unexpected and certainly welcome. Cancer is expensive to treat and to live with. I thank my lucky starts that I have the means and a good job that enables us to afford it. I can't imagine what it would be like if we didn't have insurance.

Thanks to everyone who reads my posts. Sometimes I feel like they are so self centered but I guess you guys want to know what's going on in my life. So with that thank you all for your support and encouragement. Have a happy holiday season!

Thanksgiving

I 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.

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.

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!

Back in the Saddle

I 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...

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.

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.

My plan is to return to work in a couple of weeks. Thanks to everyone for your continued support, thoughts and prayers.

1 month post op

It'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.

I want to thank everyone for your continued support through your thoughts and prayers. I am very grateful to all...

Follow up followed by another follow up

This 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.
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.
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.
All in all it was good news and we go back on the Nov. 11 for a full treatment.

Until next time...

2 weeks post op

2 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.
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.
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.
I will post an update after Monday and Wednesday's appointments. Thanks for all your positive thoughts and prayers.