Thursday, October 29, 2009

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...

Saturday, October 24, 2009

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.

Friday, October 16, 2009

Fall 7 times but get up 8

Hey 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.

I may be able to get home as soon as saturday hopefully no later than monday.

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...

Tuesday, October 13, 2009

One step forward, two steps back

After 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.

Tuesday would be a better day. The NG tube is still in. It adds a little something to the overall patient 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.

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.

Thanks for all your encouragement and love.

Guest Blogger~Sandy

Sunday, October 11, 2009

The Big Day

We arrived at Sloan bright and early at 6:30 am Friday. At 9:30 am the folks in the white coats came to get Shawn to prep him for surgery. By 10:30 am things were underway. Shawn's Dad and brother, Ed, arrived shortly after and joined me as we waited for updates from the "6th floor". We busied ourselves by telling funny family stories and sampling just about everything off of the cafeteria menu. I was starving because I had done "pseudo" fasting with Shawn the day before his surgery. By "pseudo" I mean I would duck into another room out of sight to snarf down a quick snack and he would yell.....I can smell that!

Shawn's surgery wrapped up by 3:30 pm. We met with the surgeons and got the excellent news that all had gone well..."could not have been better, textbook" they said. It would be hours before we could see Shawn though and finally he settled into his room on the 16th floor at 9:30 pm. Shortly after that we said good night and returned to our apartment for the night.

On Saturday Shawn woke up to find that someone had parked a toyota on his stomach. Despite that the nurse had him up and walking by 5 in the morning. As the day did the pain. After several hours, several phone calls to the Doctor and several dropped F-Bombs by all involved....they found the right mix and the pain was under control. Thank goodness.

Today, Sunday, things seem good. Shawn is feeling better and has been doing a lot of walking throughout the hospital hallways. Over a mile today. The nurses keep saying that he is doing great and boy what a wonderful bunch of nurses they have here at Sloan! I've taken a closer look at his battle wounds and all I can say is wow...he's tough. One incision runs from his breastbone to his pubic bone and there are two other incisions on either side of that. He looks a bit like he had an encounter with a great white. That may be the story we tell in the future to explain the scars...but there are so many other good possibilities, we will cross that bridge when we come to it. Suggestions are welcome.

Thank you for your ongoing prayers and good vibes. Will update you soon.
Guest Blogger~Sandy

Thursday, October 8, 2009

and so it begins...

We made it down to NYC and found Sandy's home away from home. She has a lovely place to stay and if you crane your neck you can get a peek at the river. The ride down on the train was beautiful. The fall colors are starting to pop. The Catskills looked like they were painted in red, orange and yellows. I think the hardest part of the day was when Mom dropped us off at the the station and I had to say good bye to Olivia. I know shes in good hands but I will be missing her alot. I'm glad to have Sandy here with me. We're still waiting for the hospital to call and let us know when we need to show up tomorrow. Sandy has just informed me that I have to begin the surgery prep. Did I mention that I haven't had anything to eat all day. I'm hungry!

We'll keep you posted...

Sunday, October 4, 2009

Pretty soon

We leave for the city next Thursday. Sandy will be staying at Miracle House while I am in the hospital. My father and brother Ed are coming down for surgery day to keep vigil with Sandy. I am geting anxious and I'm ready to get this stage done.

I am so grateful for all the love and support everyone has given me. Below is my gratitude list:

I am grateful to have a loving and supportive wife who is strong, patient and beautiful.

I am grateful to have a healthy, beautiful, and wonderful daughter who gives me much joy.

I am grateful to have a great family who provide me love and hope.

I am grateful to have an expanding network of friends some of whom I have never met that send positive thoughts and prayers my way.

I am grateful to have an employer who is extremely supportive and understanding.

I am grateful to have a skilled and knowledgable health care team. I know I'm in the right hands.

Please know that I am very grateful to have you in my life. Thanks!

Sandy will be taking over as guest blogger while I'm in the hospital. Stay tuned...