updates...

Look here for the latest information on how Skip is doing.  Feel free to send him an email if you have any questions or want to wish him well. 

Last updated on 12/18/2009

12/15/2007 - I've been home a couple of weeks and it is hard.  I can't find a comfortable way to sit or lay down due to the wounds I have.  The bed sores and surgical wounds are almost the worst.  I was on the operating table so long (30 hours total including anesthesia and prep), that I got huge sores on the back of my ankles and butt.  But regardless, home is far better than the hospital!

1/1/2008 - Making progress.  It's hard to believe the biggest pain in the butt is the pain in my butt (and ankles).  They are very slow to heal, but are moving forward.  I see a wound specialist every week to make sure they don't deteriorate.  We have to change bandages 3 times a day!  Had fun staying up until midnight with Sterling last night.  Hard to believe we almost couldn't do it!

1/16/2008 - I'm excited and a little nervous.  My radiation and chemotherapy started today.  Everyone has heard the horror stories about the side effects.  I'm hoping it's not too bad as I have a healing abdomen to worry about.  If I get nauseous often, I could rip apart the sutures around the muscle they took out to put in my eye socket.  Not really worried about being tired and losing hair.  That stuff should come back in time.

1/29/2008 - So far, so good as far as the radiation and chemotherapy goes.  All my blood work is great and I haven't had too many problems with side effects.  I'm tired all the time and my skin is very red, but no worries with nausea.  My sores are getting better still, but healing has been slowed by the radiation.

2/12/2008 - Now the radiation and chemotherapy is hitting me hard.  I'm exhausted all the time and have a hard time sleeping since my mouth is so dry.  I have to get up every 1-2 hours to rinse my mouth and try to clear my one nostril.  That usually results in some dry heaves as the mucous is so nasty tasting.  My sores are slowly improving, but still require attention every day.

3/4/2008 - I am so happy that radiation and chemotherapy are finally done.  After 33 radiation treatments and 7 chemotherapy treatments it was getting old.  Everything tastes like crap or salty mucous.  I get so dry at night I think the inside of my mouth is going to stick to my teeth and peel off.  It takes me all day to clear out my (only) right nostril in order to breath easier.  I am so tired that most days I lay on the couch and watch TV, sleep, and repeat.  The other great news is that my wounds/bedsores are now "healed" as far as special treatment goes.  I still need to take care of them, but now they look like really large blisters that are just healing.

3/12/2008 - I just met the folks that will eventually make a prosthetic eye for me.  Not much to report as there are several surgeries left before they can start their work.  Check them out at www.medicalartprosthetics.com and strausseye.com.  Still real tired and dry all the time.  One upside of the radiation and chemotherapy is that I have almost no facial hair, so shaving is a breeze.

3/24/2008 - Today I met with the main surgeon (there were several involved) who worked on me 11/19/2007.  His main goal was to see if I was recovered from radiation and chemotherapy enough to withstand another surgery on the lymph node in my neck.  He gives me the green light and my surgery is scheduled for 4/17/2008.

4/4/2008 - I have since met with the radiation and medical oncologists.  They were in charge of the radiation and chemotherapy respectively.  They both agree that I am fit for the 4/17/2008 surgery.  They will follow up with me after the surgery.  They want to keep a close eye on me for quite a while.  My tumors were so large and the cancer so advanced that even though this is a very curable form of cancer, it may come back.

4/24/2008 - I got home from the surgery a couple of days ago.  This was a much shorter stay, and much shorter surgery.  It took them about 5-6 hours to work on the left side of my neck.  They removed the sterno mastoid muscle and 70+ lymph nodes and tissue samples.  All of these samples were sent to pathology to see if there is any cancer cells alive in them.  It will be a little while before I get the results.  My neck is very sore and I have more scars.  They stapled everything back together.  The incision runs from the back of my ear down to my clavicle.  It splits off and heads towards my larynx as well.  There are pictures here.

4/28/2008 - I got the staples taken out of my neck today.  The doctor is pleased with the amount of healing so far and everything was nice and clean.  He also told me that ALL of the samples sent to pathology came back negative!  Therefore the surgery, chemotherapy, and radiation did all they could be expected to do.  I am currently cancer free, but will never be out of the woods.  This type of cancer is very curable, but my tumors were so far advanced and had spread that I will need to check back on the cancer for the rest of my life.

5/7/2008 - I met with my medical oncologist today.  He oversaw the chemotherapy.  The main reason for the visit was to check my blood and make sure everything was still OK.  My blood work looked great, so he will step back and wait until the reconstructive surgeries have been started.  If I need future treatments for cancer, he would be the first doctor to administer them.

5/29/2008 - I met with the surgeon who will head up my facial reconstruction today.  She wants a complete physical and a series of scans/x-rays to help her determine what course of action is needed.  Depending on the results, she may need to harvest bone from my hip and/or ribs to help give me a new cheekbone and any other needed structure to my face.  It is possible that no bone grafting will be needed.  Her best guess is that a July surgery may be appropriate.

5/30/2008 - When I met with the surgeon yesterday, I noted redness and an increase area of stiffness and hard tissue on the neck side of my face and neck.  She gave me antibiotics in case there was an infection.  I woke up on the 30th leaking a significant amount of fluid through a healed incision in my neck.  The pressure of the infection inside my neck had grown enough to split the healed scar.  Needless to say, I was admitted to the hospital that afternoon to be observed and evaluated.

5/31/2008 - After receiving IV antibiotics and being checked out, they decided surgery was needed to help stem the growing infection.  I could barely move my head around as my neck was so stiff and lots of tissue was very hard.  They opened me up along part of the same neck incision that had been used in the lymph node surgery.  The went in and removed some dead tissue, cleaned all areas as best as possible, and finally sprayed strong antibiotics all around.  I felt great after the 2 hour surgery, but the next day I was very sore and stiff.  The next 2 days were ones of all over body muscle soreness and difficulty moving my head around.  They sent me home on Monday 6/2 with antibiotics (and more staples in my neck!).

6/5/2008 - I have gained some neck mobility back and my muscles are far less sore.  I am still leaking, but to a much lesser extent.  Also, the redness around my neck and left eye orbit have significantly decreased.  So it appears that the infection is receding.  I see the doctor on Monday 6/9 to remove the staples and check up on the infection.

6/9/2008 - The doctor is still worried about my infection.  In fact, he cut my neck open (in the office, I can't feel a thing there) in several places along the horizontal scar to see if he could get any fluid out and to take a look inside.  The infection is much better, but it appears that it was so bad to start that it will take longer than expected to be defeated.  I also received my next surgery date.  On 8/5/08 the reconstruction will begin.  I'm still not sure what the operation will entail as the doctor needs to get results from several scans of my face, consult the results of an upcoming physical, and consult the general surgeon about the surgical hernia in my abdomen.

6/22/2008 - Yes, Sterling and I are Boston Red Sox fans, but we are baseball first.  And we certainly respect the history of the game and the great teams and players that have made the game as great as it is.  So, a couple of months back I inquired about bus trips to Yankee Stadium from a couple of local companies.  Only one company replied, and to my great surprise, donated two tickets and the bus ride to Sterling and me!  The name of the company is Cazenovia Limousine and Tour Service. They are located just outside of Syracuse, NY.  We chose this date as school was essentially over and we got to see Ken Griffey, Jr. play as well.  The Yankees won the game 4-1.  The highlight for us was seeing Ken Griffey, Jr. hit his 601st home run off a 100mph fastball.  Sterling and I had been hoping "Junior" would continue his "slump" for a couple more weeks, but alas, he hit his 600th home run on 6/9/2008.  We had a great day at a great stadium during it's final year of service.  We left Syracuse around 6:30 AM and returned the same day about 10:30 PM.  There are lots of pictures from the game here.

6/25/2008 - I just finished a complete physical.  They did blood work, urine testing, checked my heart, lungs, abdomen, reflexes and the usual.  They also did an EKG (first one I've ever had).  The main reason was to make sure I was OK for the next set of operations.  The doctor's wanted to make sure I had recovered (as much as can be expected anyway) from the ordeal I have already gone through.  When I was first diagnosed they said that since I was "young" and "healthy", they would be very aggressive in their treatment.  Well, they certainly didn't try to sugarcoat the truth, whew!  But as far as I can tell, things are going well.  I still get tired easily and need to rest for a day or so after working or playing to hard for a couple of days, but it's worth it.  Sterling and I hope to do some camping in July, so I've gotta get more energy back!

6/30/2008 - I just came from a follow-up regarding my massive neck and face infection.  The doctor believes it is gone, but is having me get another CT scan to make sure there aren't any pockets of fluid still remaining.  My neck and face look much better.  They were as red as a "candy apple red" corvette just a month ago.  The scan is scheduled for 7/11.

7/5/2008 - Sterling and I had a great week to start July.  Even though we had some rain issues, he finished his best baseball season in 7 years of playing.  This is the first winning team he's ever been on.  This is a "travel" team for 13-14 year old kids.  They won their regular season division and were seeded second out of 10 teams from five different division around central New York.  They made it to the semifinals in the playoffs, but were beaten by a team that hit far better than we did.  I had a great time coaching this team (and his winless modified school team as well).  Can't wait to do it again next year!

7/7/2008 - I just started physical therapy designed to increase the mobility in my neck and left shoulder.  The surgery on my neck in April left me without the main neck muscle on the left side, decreased range of motion as well as significant loss of feeling from my left ear to my shoulder.  I would have started the therapy sooner, but the infection made that impossible.  I expect to get about 30 sessions that will stretch the muscles that I have out.  Many of them are so hard they don't even feel like muscles!  They are also hoping to soften up the vast amount of scar tissue.  That should allow for some easier movement as well.  I will be going about three times a week.  I also have to do a 45 minute series of stretches twice a day.  It's not clear how much I will get back, but I will have more mobility and strength than I do currently.

7/21/2008 - The physical therapy has proven to be a great help.  I feel better and have more mobility in just a couple of weeks of treatments.  I have worked hard at home as well.  It takes a lot of time, but is worth the effort.  I didn't even miss any treatments or personal stretching sessions while Sterling and I were camping at Green Lakes State Park just outside of Syracuse, NY.  We camped Monday through Thursday.  We hiked some great trails, went swimming, played frisbee golf every day, and had camp fires each night.  We try to go camping every summer and I'm glad we were able to even though I've got a lot of appointments and health related stuff almost every day. 

7/22/2008 - On 7/30 I have a follow-up with my medical oncologist.  He is responsible for my chemotherapy.  On 7/31 I have the pre-operative appointments with my surgical doctor and the testing folks at the hospital.  They make sure I am ready for the surgery by checking my blood again and answering any questions I may have.  I suspect my surgical doctor will inform me of the details of what they are going to do.  There is still some uncertainly as to whether they will try to do more than one procedure at the same time or not.  It's also uncertain what will be the best approach for the procedure(s) as they are still analyzing the CT scan and results from my physical.  On 8/1 I have a follow-up appointment with my radiation oncologist.  He will most likely be looking at the skin on my face and neck to look for any abnormal problems related to the radiation.  My surgery is scheduled for 8/5.  The main goal of the surgery is to "de-bulk" the tissue in my left orbit.  They put a whole abdominal muscle where my eye was.  It's intended to fill in the missing flesh and give the doctors material with which to build a receptacle for a prosthetic.  They always put in more than is needed as it is easier to take extra out after the initial surgery than it is to put something missing in.  Plus, I was so swollen after the first surgery it would have been impossible to tell how much muscle would be needed.  At one point my ears were flush with the rest of my head!  If I get a chance I'll post an update before the surgery on 8/5, stay tuned!

8/7/2008 - They sent me home today.  I was surprised how tired I still was.  I slept the next two days straight.  They took out a lot of tissue in order to create a cavity in which the future prosthetic will go.  I still have parts of my eyelids.  Check out the pictures page to see what I mean.  The two main procedures were a brow lift (to try and even out my left brow with the right one) and liposuction (to remove the fat from the abdominal muscle that was put in the left orbit).  They also removed some muscle tissue from the left orbit and went through my mouth again and removed some of the excess muscle tissue they had placed in my left cheekbone area.  Overall the goal was to create a place for the prosthetic to go and to even out my face a bit.  I think it worked quite well and as the swelling continues to go down, it'll look even better.

8/14/2008 - Today I followed up with the surgeon who did the brow lift and liposuction and such.  She was very pleased with the results.  She took out the staples in my head and wanted to make sure there were no complications.  The swelling has gone down quite a bit and as my ex-wife Jacki said I "look a lot less scary."  I was supposed to have a bandage on my head for the week after the surgery, but it fell off in the middle of the night a couple of days after returning home.  The bandage was covering the staples where the brow lift had been done.  I did my best not to let it get dirty, but it was tough as my hair was in the way of any real cleaning or antibiotic ointment.  But I finally got to take a shower after the surgery today.  That was an amazing energizer and it was very weird sticking my fingers in the cavity in order to wash it properly.  I have to keep the underside of the eyelid parts moist with an ointment, so twice a day I clean the cavity out and put the ointment in.  Lastly, she wants me to get another opinion about the next step we should take from a well known plastic surgery ophthalmologist named Dr. Bersani.  He is also with University Hospital and is close by.  I will see him on 8/22/2008.

8/22/2008 - I just got back from seeing Dr. Bersani.  He suggested that I have the rest of the eyelid tissue removed to create one smooth cavity for the prosthetic.  He feels that it will be far easier to construct the prosthetic and, more importantly, that it will be far easier for me to clean it properly and deter infections if I don't have hidden crevasses to worry about.  I am not sure how long it will be before this surgery takes place.  He also discussed some of the options for the prosthetic, but I had a pretty good idea about them when I went to www.medicalartprosthetics.com and strausseye.com back in March.  I am hoping that they will not use adhesives to hold the prosthetic in as my skin is very sensitive to detergents and to the adhesives on the tapes used in all the bandages I've had over the last several months.  My hope is that they will do an operation to put several "countersinks" into the bone in my eyebrow.  Kind of like the countersink used for screws in drywall.  They would put these in the bone, and under the skin, and wait several months for them to become ossified (i.e. fused with the bone).  The next step would be to place screws into the countersinks and through the skin.  The prosthetic would then have magnets on the back of it that would stick to these surgical screws and hold it in place.  Usually, this type of cancer happens to someone far older who doesn't really need, or care about, having "the best possible result."  IN those cases the patient just goes through the rest of their life with a patch at most.  The cavity is easy to clean, so there are few complications and the patient has no need to look a certain way for work or what not.

9/3/2008 - Sterling and I just got back from a great set of vacations to end the summer.  His school starts on 9/4/2008, so I thought we'd do a road trip before he went back to work.  To start things off my great friend Ian Popken and his wife Karen and son Jeffery came to visit with us on 8/25 and 8/26.  Ian is one of those friends that you can not see for several years and then pick up right where you left off as if no time had passed.  After exchanging some gifts for each other and the kids we went to Green Lakes for a hike around Green Lake and to catch up.  We took a bunch of pictures that you can see here.  We had fun listening to albums after a great dinner at a German restaurant called Danzer's.  The next morning the boys played with the presents from the day before.  We went to Comfort-Tyler Park about a block away and played Junkball and the Power Stick.  Lastly, I hit them some fly balls with a real baseball and both families hit the road.  We were due in Sanborton, NH for a visit with the Landry's.  I went to Clarkson University with Steve and Ian.  Some of the best times listening to music was with Steve.  I still remember getting turned on to Robert Palmer's Sneakin' Sally Through the Alley album by Steve.  I have to thank Steve's parents for the great time too as we stayed on Hermit Lake at their camp.  I took a bunch of pictures that you can see here.  It was nice to meet Steve and Noelle's beautiful kids Ella and Alex.  Even though they are much younger than Sterling they had a grand time.  We had a great fishing derby one day.  I won't say who won, but those that were there know!  ;-)  Sterling got to water-ski for the first time as well.  Steve pulled him on the back of a little 10hp motor.  Who says being light isn't an advantage?  After a couple of days there it was time for us to head to visit my Mom in Jericho, VT.  We spent a relaxing couple of days there playing with the dogs and playing a game I played as a kid called "Off the Wall".  We also figured out how to strap a snow blower to the back of my Ford Contour for the ride to Enosburg, VT to visit a friend from high school.  We hadn't seen the Carters since just before their son Calvin was born.  It was an overnight stay, but we made the most of it.  After arriving we ate a great dinner of homemade pesto pizza and sat by a fire telling stories until the kids fell asleep.  In the morning we took a tour of the farm Ken and Melissa have been building up for the last 10 years.  Izabella, Calvin and Sterling rode on their horse for a little while as well.  We went to a sugar house they had recently built and ate some sour crabapples.  Before having lunch and hitting the highway back to Syracuse, we had to have a game of wiffle ball.  It was Calvin, Sterling, and myself against Izabella, Melissa, and Ken.  Melissa's power proved to be too much for us as she hit homerun after homerun for the victory.  Sterling and I made it home exhausted on 8/31.  The next day we went to Emerson Park to play their new frisbee golf course.  Upon returning from Auburn, NY we had driven approximately 1000 miles in our weeklong vacation!  Boy was I tired.  I basically slept the next two days away!

9/16/2008 - I just got back from a follow-up visit with my family practitioner Dr. Smith.  He indicated that the blood work I had done in July prior to my 8/5 surgery was OK.  No surprise to me otherwise they wouldn't have operated.  They checked my vitals and said that I was good to go as far as they were concerned and that I don't need to see them until I have a problem or as requested by the surgeons.  On 9/25 I have a follow-up appointment with Dr. Butts.  She did the recent surgery on my left orbit among other things.  I'm hoping to find out when we can remove the excess eyelid tissue and how long after that before we can consider which way to go with the prosthetic.

10/24/2008 - My 9/25 appointment was just a follow up to make sure my left orbit was healed and there were no complications with the remaining eye lid tissue.  Dr. Butts agrees that we should remove the excess eye lid tissue and asked me to contact her when I followed up with the surgeon, Dr. Bersani, that would be performing that operation.  My 10/10 appointment with Dr. Bersani was pushed back to 10/24.  After meeting with Dr. Bersani today, he indicated that he felt that I am ready for surgery.  It is scheduled for 12/29/2008.  The surgery should last about an hour and be an outpatient procedure.  After this surgery is completed, and I have sufficiently recovered, then I am hoping that we can address the surgical hernia in my abdomen.  This resulted from the original surgery.  They had to take an entire abdominal muscle out and place it in my left orbit.  The muscle tissue is sealing my brain in and makes up my missing left cheekbone and surrounding tissue.  That left my stomach muscles weakened and the numerous amount of coughing, sneezing, and general pressure from my internal organs has made that part of my belly very weak.  If I have to sneeze or cough, then I need to bend almost completely in half to use my leg to support my abdomen.  Other than this surgery, I believe I have only cosmetic procedures left.

10/31/2008 - When they took out half of my neck in April, I started waiting to begin physical therapy to strengthen the rest of my neck and upper body.  Since I had to deal with a major infection in May, I was unable to start the physical therapy until mid-July.  I was able to get evaluated and it was determined that I could gain a significant amount of range of motion from the therapy.  So for about two and half weeks I went to physical therapy three times per week.  I also had to do an hour long set of stretches twice a day at home.  At each physical therapy appointment they would work on mobilizing my massive scars and doing some light weight works to build upper body strength.  The surgery on 8/5 forced me to stop the physical therapy.  I was able to start it again at the end of September.  After about a month of appointments three times a week and constant stretching at home, they determined that I had gained as much as I could from the therapy.  But, in order to maintain the limited range of motion that I have currently, I will need to continue the stretches for the rest of my life.  It should help me be more fit, so I'm looking forward to it.  I also started repeating what weight work I could do with my small set of hand weights.  I have noticed that my shoulders, neck and arms are much stronger, watch out Lou Ferrigno!

11/3/2008 - I am still getting very fatigued from time to time so I purchased a bike trainer that converts an outdoor bicycle to an indoor stationary bike.  I am hoping that working on my cardiovascular system may help increase my energy level as well.  It's quite noisy and doesn't provide quite enough resistance, but definitely gives a functional workout.

11/17/2008 - I decided to return the bike trainer.  The cost of the trainer and the needed front wheel platform covers about 85% of a year membership at a local fitness center.  So I joined Planet Fitness for $10/month and a $29 start-up fee.  My plan is to do weight work three times per week and do cardio work three days per week.  I have a routine set up to that takes about 1.5 hours.  I start and finish with 10 minutes on a stationary bike.  I do about 16 different Cybex weight stations in between.  I've been going about a week at this point.

11/30/2008 - Just got back from visiting my Mom and her partner Cami in VT.  Also got to meet a lot of new friends of the Carter-Dion family.  I went to high school and played a lot of baseball with Ken Carter and his father as well.  Sterling had a blast at a Thanksgiving celebration with the Carters and their friends.  We were honored by receiving a gift in the Andrea Carter's name.  She passed away years ago and the family has a tradition of helping someone in need every year, thanks again Ken, Melissa, Izabella, Calvin, Jim and Sue!  It seemed strange not going to the gym for most a week, but it'll be waiting for me tomorrow.

12/13/2008 - Well, it's shaping up to be a very busy month.  Aside from playing darts in a steel tip league every Tuesday night, Sterling has two basketball games per week and we stay after practice on Wednesdays and Fridays to do some extra shooting practice.  It's fun shooting darts against people, and beating them, with just one eye.  I recently got 3 bulls-eyes in one turn three times in the same game!  The real excitement this month though is all the doctors appointments.  I had a follow up with my radiologist and medical oncologist (he managed the chemotherapy).  Both appointments were fine as I haven't had too many problems other than the oozing of the eyelid tissue in my left orbit.  Since they are coming off soon, 12/29/2008 actually, we aren't worried about them (as long as I keep them clear that is).  The medical oncologist asked for a set of CT scans and an MRI of my brain to see if the cancer has returned or if there are any other problems.  Those scans are scheduled for 12/30/2008.  I also have an appointment on 12/16/2008 with a general surgeon.  He will start looking into the surgical hernia in my abdomen.  It came about as a result of the need to harvest a muscle from my belly to serve as tissue replacement in my left orbit, face, and skull.  I also have a per-operative and pre-testing set of appointments on 12/22/2008.  These are usually to prepare me for the surgery on 12/29/2008 and to make sure my body is ready for anesthesia and the proper blood type is in supply.  Since this will be an outpatient procedure, I do not expect a difficult recovery.  I will be headed home the same day as the surgery.  They are planning to remove the excess eyelids and mucous membrane.  They will then reattach the eyelid skin over the area so that I will have a smooth cavity in my left orbit.  I believe they bandages will be on for about one week.  I suspect that it will take a little longer to heal completely as eyelid skin is very sensitive and that is the area where I have had the most surgery and treatment.

12/14/2008 - Aside from missing about a week when Sterling and I went to VT, I have been very  fastidious about going to the gym.  I went every day last week except Friday.  My strength continues to increase as I am tracking the weights and repetitions I do at each session.  I am also increasing my cardio-vascular work in between weight workouts.  On a weight day I typically do 40 minutes of cardio and an hour and twenty minutes of work on about 16-20 machines.  On cardio days I do about an hour of work on a stationary bike and elliptical machine.  I always feel great, albeit tired, after each workout, but I have yet to notice that I am gaining energy in general.  I still take lots of naps and sleep in pretty late most days.  Even if it doesn't help my energy level for a while (or maybe not at all), it certainly can do nothing but help my heart, lungs, and everything else!

1/5/2009 - I am recovering well from the 12/29/2008 surgery to remove excess eyelid tissue.  They wanted to remove the tissue to make it easier to keep the area clean as well as to make it easier to fit a prosthetic.  Without the extra folds of skin it is less likely to get dirty and infected.  Sterling and I enjoyed Christmas, New Year's Eve and his birthday.  He stayed with me from 12/30/2008 through 1/4/2009.  Our NYE was spent eating a great dinner, watching Monty Python's movie "The Holy Grail", snacking away on all sorts of cheese and crackers, and a sparkling grape juice toast at midnight.  Another highlight was going to an indoor batting cage and throwing about 300 pitches to Sterling and a friend of his.  I also had some follow-up scans on 12/30/2008.  They did CT's and MRI's of my head and neck to make sure the tumors aren't coming back.  I have future appointments to get those results in a couple of weeks.  I also have started the process to undergo surgery to fix the hernia created by removing an abdominal muscle to put in my head.  They will do an exploratory surgery on 2/4/2009 to see how best to approach the repair.

1/9/2009 - Today I went to see Dr. Bersani as a follow up to my 12/29/2008 surgery.  At least I thought it was going to be him.  I saw doctors that work with/for him instead.  They liked how my orbit was healing and asked a few questions about how it felt and if the oozing was gone.  There is no more oozing and it is  much easier to clean and keep clean.  I have no feeling in the area, so there was no pain or other sensation to report to them.  At this point I believe I have completed all of the surgeries that need to be done before any consideration of a prosthetic.  The area is still red, but I believe that is from the intense radiation I endured last year.  The redness has not diminished since that time.

1/14/2009 - I just returned from an appointment with my medical oncologist.  Dr. Gajra took care of my chemotherapy and is in charge of any drug-related treatments I may need now or in the future.  I still have occasional pain and he is the doctor that helps me manage it.  I came to see him as I felt some strange bumps in my left breast.  Breast cancer is very rare in men, but since my cancer had spread to my lymph nodes in my neck on the same side as the bumps I felt, I thought it would be best to check them out.  Dr. Gajra doesn't think there is any problem.  In fact, by the time I got to the appointment I couldn't really feel the lump any more either.  It hurt a lot two weeks prior when I made the appointment. I've still been going to the gym regularly.  I average about 4-5 times per week.  I've been working on cardio every time I go and do some weight work every other visit.  I have a hernia repair surgery scheduled for 2/4/2009, so I want to get as much time in at the gym as possible before then.  I'll have to take at least two weeks off at that point to recover.

1/20/2009 - It was time for a follow up with Dr. Kellman today.  He was in charge of my original 25 hour surgery.  He wanted to see how I was doing and get a first person look at my progress since we last saw each other.  He was impressed with how good I looked, but I could barely talk.  I had gotten over a cold about a week and a half earlier, but could not clear my throat or speak very well.  I didn't feel any pain or have the urge to cough.  Turns out it was my first case of laryngitis.  It's strange sensation not being able to talk, but not feeling any pain in your throat either.  I just have to rest my throat, drink lots of fluids and get rest and it should go away.

1/27/2009 - Hours of appointments today.  My hernia surgery is on 2/4/2009, so the doctor wanted to see me to discuss the surgery and check a few things to make sure I'm ready for the procedure.  Since my belly is so strange to start with, he is not sure if there is a defect, how large it might be, or what type of repair will be needed.  They harvested a whole bunch of muscle from my belly to fill in the tissue they had to take out of my head.  That left a lot of scar tissue and muscle weakness.  I have been very careful over the last year.  If I had to sneeze or cough, then I would bend over and put my arm between my belly and leg to offer support.  When I go to the gym I do not do any exercises or weight work that focuses on my abdomen.  I have had pain in my belly since the original surgery.  The severity goes up and down with no discernable pattern, so again there are no clues as to what the defect, if any, may be.  At best, they will make two small incisions, locate the defect with a camera, and then slide in the mesh and unfold it into place.  At worst, they will make a several inch long incision and open up my abdomen to full repair the defect.  The surgery is planned for a single overnight, but a longer stay may be needed if it is  more sever.  I also went to a pre-testing appointment where they took blood to check out and went over the procedure and anesthesia.

2/11/2009 - Well, the mystery has been solved.  They had to open me up and do a lot of work to do their best to repair the hernia.  I'm betting they haven't worked on too many patients that have had a whole section of abdominal muscles removed.  I was in immense pain coming out of surgery when they woke me up and moved me to my hospital room.  The morphine drip they gave me didn't even cut the pain down one iota.  Needless to say, I didn't get much sleep and could not eat solid food.  I couldn't even drink liquids for a few days.  Any time I tried to move, the pain would stop me in my tracks.  I have a huge pain threshold, but this was way beyond it.  I was hoping to be home on 2/5, maybe 2/6 at the latest, but I didn't even start on a liquid diet until 2/6.  They were pumping my I.V. with fluids and once I started drinking water and eating broth they were happy that I wasn't nauseous and was passing urine without any problem.  No problem except for the amount of pain involved in getting up and out of bed to pee in the urinal that is!  They started me on some jello and pudding the next day and gave me some soft solid food late Saturday and Sunday.  Again, they were happy that I kept everything down, but were worried that I wasn't passing gas yet.  After another day or so gas was coming fairly regularly, so they decided to send me home on Monday 2/9.  It was still another day and a half before my first bowel movement came, but I was very relieved, both literally and figuratively.  If they had created a blockage during the procedure, I might have to go back to have an emergency procedure to keep my intestines from bursting.  Anyway, I'm OK there, but still in a lot of pain.  I can't return to the gym for probably 6 weeks and need to stay as low key as possible over the next month.  My follow up appointment is on 2/24/2009 with the surgeon Dr. Kim.

2/12/2009 - I guess it's also time to see if any of my cancer is returning.  Previous scans have had a hard time making a definitive determination as my body structure has been greatly altered.  So the traditional MRI and CT scans show lots of unusual masses, but they could be scar tissue, or confusing because I am missing so much muscle and bone.  Thus, I have a full body PET scan scheduled for 2/18/2009.  This scan should track blood flow and such in a manner that will be better to visualize than the other scans.  I'll post any results when I get them.  They are using my last CT and MRI scans as a sort of baseline for future CTs and MRIs, so we'll have to wait and see how they are going to be able to check up on the cancer.

2/25/2009 - I saw Dr. Kim yesterday.  He removed the stitches and staples that he thought should come out.  He said that the wound looked good and that I could start doing some light cardio work at the gym.  I still can't lift anything over 10 pounds and he wants to see me back in three weeks.  Because so much muscle was taken from my belly in the first surgery, he did not have a lot to work with for this hernia repair.  A lot of the tissue in my belly was weak and there was a lot of scar tissue as well.  In other words, he did the best he could, but he is not sure how strong the area will be able to become.  I guess time will tell.  I also saw one of my original surgeons on Monday 2/23/2009.  He ordered the PET scan and wanted to go over the results with me.  There was elevated blood activity near the surface of my left orbit, but nothing unusual in any other areas.  The activity is likely due to my 12/29/2008 surgery in that area.  It usually takes about 5-6 months for such things to "settle down" and not show as active areas of blood flow and supply (i.e. like what a tumor would require).  So we felt that things looked good and will do another PET scan in May.

3/15/2009 - Instead of going to the gym to do some cardio work, I decided to go for a bike ride.  The weather has been teasing of late and it was about 50 degrees Fahrenheit, so I figured I'd be warm enough riding.  I went about 16 miles and felt pretty good.  It's much easier to go 16 miles on a stationary bike inside, but no where near as much fun.  My belly didn't bother me a bit, so I'll be out on the trail again as soon as it's warmer.  Sterling and I still have some unfinished business.  When I was diagnosed with cancer, we made a goal of riding the complete distance from Syracuse to Rome (about 33 miles) on the Old Erie Canal Trail.  We made it 28 miles last year (14 miles out and back from the Rome side), so we know we can make the whole trip.  The weather kept us from trying ride again last fall, so we'll make it happen this riding season.

3/25/2009 - I saw Dr. Kim again on 3/17 for a follow up to the hernia surgery.  He was happy with how the wound was healing.  I still need to wear the abdominal support for at least another month.  It's essentially like a velcro girdle that goes around my belly to help support the muscles, and lack thereof, during the recovery.  There was a 5-6" diameter hole in the muscles around my stomach area that was patched (as best as possible) with the mesh.  He hopes the mesh will hold for two years.  At that point I'll have to have it redone.  So I've decided to make sure I take it easy a little longer.  After another month he says I can go back to lifting at the gym.  As long as it doesn't hurt, it's OK to do.  So I'll be feeling it out for quite a while.

3/26/2009 - There are only a few miles of the Old Erie Canal Trail that I have not ridden.  Today I started at the 5 mile mark (from the Syracuse, actually Dewitt end) and rode about 12.5 miles towards Rome.  That got me a little past the 17 mile marker.  When Sterling and I rode from Rome back towards Syracuse last fall, we got to about the 21 mile marker.  Overall today I rode about 25 miles.

4/9/2009 - I had follow up appointments with my radiation and medical oncologists over the last week.  Both are happy with how I look and will be awaiting CT and PET scan results from those I will be scheduling in May.  Provided there are no problems, they will both see again in August.  Today I went for another bike ride on the Old Erie Canal Trail.  It was a crisp sunny day.  I went about 22 miles.

4/13/2009 - Sterling and I are headed to visit some friends during his spring break this  week.  Can't wait to meet Damian "Damo" Johnston's two girls, then stop overnight to see Jim "Flip" Robinson, followed by a 40th birthday celebration for Ian Popken just north of Boston, MA.  All three of these guys are great friends from college and my fraternity Zeta Nu.  Damo and Flip visited me in the hospital when all of this started, and Ian's family came for a visit last fall, so it will be nice to get out to their neck of the woods.  I'm sure there will be some pictures to follow.

4/20/2009 - What a week.  Thanks to Damo, Flip, and Ian for having us.  We had a great time with Damo's wife and kids, playing bumper pool at Flip's, and a grand time at Ian's 40th birthday fiesta with the fine mariachi band.  I have a bunch of photos from our trip.  They can be found here.  Sterling's modified baseball team (7th and 8th graders) starts their games this week.  I am the "bench" coach for the team.  I handle the bench, score book, batting order, and talk to the players about the game while they are hitting and the other coaches are on first and third base.  Last year I did the same thing, but this year should prove much easier as I was just out of radiation and chemotherapy last time.  The team did not win, or come close to winning, a single game last year, but they have all gotten bigger, better, and had more experience so we are optimistic.

4/27/2009 - Today I went to see Dr. Kellman.  He is my ENT doctor who started all of my surgeries in motion.  He also performed much of my original 25 hour surgery and the surgery on my neck in May 2008.  The purpose of the visit was to follow up and make plans for PET and/or CT scans in May.  My follow up went well, all looks as good, if not better, than they expected.  Since I just had a PET scan in February, Medicaid will not authorize another one in May.  Thus, we are going to wait until August and hope Medicaid will allow it then.  I also spoke with Dr. Butts' nurse.  She was the doctor who did the reconstruction work in the original surgery as well as the de-bulking surgery where they trimmed out the excess tissue from my skin paddle and cheek area.  We have not heard back from Greg Gion in Texas regarding when I might be able to see him about a prosthetic.  It is my belief that I will not have enough bone structure left in my face to have a magnetic prosthetic.  IN this case, they implant surgical steel screws into three places for other parts to be fitted to.  Then magnets would hold the prosthetic to these implants.  The other option is to use adhesives to hold the latex "skin" and acrylic "eye" in place.  I do not wish to go this route as I have skin that is very sensitive to adhesives.  Likely, I will not get any prosthetic.  I am happy with the outcome so far.  Now, I just hope the cancer doesn't come back.

4/28/2009 - As I mentioned previously, I have very sensitive skin.  I had problems with the so called hypoallergenic clothes and bedding in the hospital every time I've been there.  The first surgery I actually brought my own clothes and bedding from home to get the rash to dissipate.  Anyway, today I went to the walk-in care facility at my health center because I could not get an appointment with my primary care provider for over a month.  The skin on my face is very red.  The doctor there was not sure what the problem was, but gave me two ointments and asked me to see a dermatologist.  I will always have redness in my left cheek due to the aggressive radiation, but my right cheek forehead and a couple other spots seem unusually red.  After getting home and trying to schedule an appointment with the dermatologist I found out it will be a six month wait.  I'll use the ointments and see how it goes.

4/29/2009 - I went to my first dentist appointment since my November 2007 surgery.  I have been very worried about this for several reasons.  First, I cannot open  my mouth anywhere near as far as before the surgeries.  And when I do, I have significant discomfort.  Second, they went in through my gum line on the left side of my mouth for a couple of surgeries and I have very sensitive gums on the upper left side.  So much so even touching them with a soft toothbrush is quite painful.  Lastly, I am missing half of my upper palate, all of the left side.  I cannot chew food on this side of my mouth as it would likely break my teeth off as they have no foundation for support.  I am relieved to report that it went pretty well.  They did not try to clean my whole mouth today as there were x-rays needed and paperwork to fill out.  They decided to have me back to finish the cleaning.  I am still worried about my upper left teeth as they left those for next time, but the dentist was surprised how good my teeth were after all of my surgeries and the amount of time it had been since my last cleaning.

5/1/2009 - I am the head coach for Sterling's Travel League baseball team.  It's for 13 and 14 year olds that live in a certain area.  We play games against other area teams.  None of the teams are outside of the Syracuse metropolitan area, but it is the first time the 13 year olds have played on the full size field.  It can be very tough for them at first.  Tonight was our first practice.  Games start on 5/16.  Last year Sterling was one of the 13 year olds on this team and I was an assistant coach.  I was in charge of the outfield, coached first base, tracked the pitching count and helped make the decisions of which pitchers should be used.  Needless to say, being the head coach is a lot more work.  Loads of phone calls and scheduling issues, but it should be fun.  Last year we were first in our division and made it to the semifinals in the playoffs.

5/15/2009 - Today I had a follow up appointment with Dr. Bersani.  He is the eye surgeon who removed the excess eyelids and made a smooth cavity where my left eye was.  This made it much easier to keep clean as the nooks and crannies of the eyelids collected a lot of dirt and debris.  They also needed to be kept moist, so I used a special ointment for that several times a day.  He was very pleased with how everything looked.  The surgery was on 12/29/2008 and he doesn't think he needs to see me again unless there are future problems.  Now that's a first, a doctor that doesn't want me back!  He also agrees with me about the prosthetic.  It is unlikely that I have enough bone for the magnetic installation, and sees no reason to go with the adhesives if I am happy with the outcome.  I have had so many surgeries where any number of things could have gone wrong, or much worse than they did, so why add more surgery to the program?  Especially, since these surgeries will be much closer to the original tumor site and involve moths of healing before the second stage of procedures.  The risk of infection alone may not be worth it.

6/15/2009 - Not much has been going on outside of coaching Sterling's two baseball teams.  Neither team is doing very well, but they have improved quite a bit from the beginning of the season.  I've been felling pretty good as well.  I still get tired pretty easy and still have not returned to the gym on a regular basis, but I'm waiting until after baseball finishes in a couple of weeks.  I had thought I was going to get another PET scan last month, but Medicaid would not approve it as I had one in February.  We are planning on getting that done in August at this point.

6/29/2009 - Sterling is hanging with me all week.  He just finished 8th grade with flying colors.  He had a moving up ceremony last week and was awarded a certificate of excellence for his all around achievements at Ed Smith school.  His teachers got together and nominated him through the state.  He was the only one to receive such an award in the school!  We're just relaxing all week and having fun as he's worked hard all year.

7/12/2009 - I had a great weekend in Potsdam, NY at my fraternity Zeta Nu.  A lot of alumnae from the late 60's and early 70's were there.  It was great to meet them, have a few drinks, enjoy a couple of meals and thank them in person for all they have done to make my life easier the last year and a half.  I also ran into one of the first friends I met upon arriving at Clarkson University in August 1986.  Michelle "Muffin" Hastings-Hannon went on a camping trip before school started with me and several other folks, including Damian "Damo" Johnston, another friend and ZN brother to this day.  I camped out in the backyard and couldn't believe that my tent took on no water when we had a downpour of monsoon proportions during a thunderstorm that took out the lights all around town.

8/5/2009 - Whew, what a week with Sterling last week!  We left Syracuse in the Am on 7/27, headed for Lake George.  Dennis MacElroy lives near the lake and has an awesome place on Lake George as well.  He is a fellow ZN brother and past president of our fraternity.  But, even more importantly, he has survived the same cancer I have been battling.  His tumor was on his upper back.  It was misdiagnosed at first, but after a long battle he is currently cancer free.  He garnered the support of the Fred T. Loomis II International Golf Tourney on my behalf.  A lot of ZN brothers get together and play golf each year.  They pitch in for the hotel, food, greens fees, drinks, and a charitable goal every year for 36 years now!  This year I was their charity much thanks to Dennis for pitching it to them.  Anyway, I couldn't wait to meet Dennis and his wife, spend some time getting to know them and of course thanking him in person.  We had a fabulous time at their camp.  We went for a boat tour of much of the lake near their place and Sterling went for several spins (and wipeouts) behind the boat on an inner tube.  I have loads of pictures up here.  After dinner we left for Jericho, VT where I grew up and my Mom still lives.  We helped her take care of some storage needs and I went out with Kevin "Cooter" Reichhart (another ZN brother) to see Xavier Rudd in South Burlington.  It was nice to see some live music, it's been a while.  On Wednesday, we got ready for a party at my Mom's.  The neighbors and some friends I grew up with were coming over for a potluck.  My Mom took Sterling to a Burton store/factory and he together they bought him a new snowboard for next winter.  Before the party, Sterling and I went to Jeffersonville to meet up with another ZN brother and his family.  Andy Hadley then took us to play frisbee golf at Johnson State College.  We had a great time and the one-eyed guy came out ahead by 2-3 strokes.  The party then had great food and friends to finish the evening.  The next day we left for Stone Hollow Farm in Enosburg, VT.  One of my friends from high school has been there for 10 years and we've been visiting him there on and off over that time.  We got there and got ready to go to the Black Falls Disc Golf course in Montgomery, VT.  There were 6 of us, so it was slow going at first as Ken, Melissa, Izabella, and Calvin had never played before.  After a few holes we started getting into a rhythm when Sterling slipped on a moss covered log and impaled himself with a branch.  It went all the way to his tibia and took out a good sized chunk of muscle, fat, and flesh as well.  We were about 40-45 miles away from any sort of hospital, but Sterling was a trooper and was able to get out of the woods and to safety.  It took us about 3 hours in the emergency room to get it cleaned out as best as possible.  He still has to be very careful as it was a very serious wound, but it's looking better after almost a week of recovery.  I was joking with him that finally someone was taking all the attention away from me!  He mainly needs to keep it clean, keep weight off it, and keep it elevated.  He has strong antibiotics to take twice/day and it'll likely be a couple more weeks before he is back to normal.

8/6/2009 - I was just about to call one of my doctor's yesterday when their office called me to schedule a follow up.  I reminded them that I needed to schedule a full body PET scan as well and luckily they had a cancellation and opening for today.  I've had many scans over the last year and a half, but this will be the first one that is sufficiently far away from any surgery.  The last surgery on my head was 12/29/2008.  The surgery on my belly was 2/4/2009.  I had a scan done in February that noted extra "activity" just below the surface in my left orbit.  That was to be expected as I had a procedure in that area on 12/29/2008.  Stay tuned...8/24/2009 appointment to discuss the results.

8/25/2009 - Great news!!!  All of my scans came back negative from earlier this month.  They did a full body PET scan and several CT scans.  It's hard to believe that it's been almost 2 years since my diagnosis and first surgery.  I still get real tired from time to time and I have to take it real easy on my abdomen, but other than that I am doing pretty well.  I started going back to the gym a couple of weeks ago.  I've been going 2-3 times per week, but hope to up that to 4-5 times per week pretty soon.

12/18/2009 - Not much to report.  Things have been quiet since the negative scans in August.  I suspect they will give me another series of scans come February or March.  I will need to get scanned periodically for the rest of my life.  At this point I believe it will be every 6 months.  Maybe after a while it will be once per year.  I hope everyone is having a great holiday season!  Thanks for all your help and support!