Family Address

Many have asked where to send condolence cards for the family. Please send to our Dad at:

Ted Kokoski
4010 Turnwood Lane
Moon Twp., PA 15108

Thanks ... Cathy

Map from PIT to funeral home

For those traveling from out of town to attend Tom's funeral, here is a link with directions from the Pittsburgh International Airport to the Copeland Funeral Home.

http://www.mapquest.com/maps?1qn=Pittsburgh+International+Airport+(PIT)&1c=Pittsburgh&1s=PA&1y=US&1l=40.48976&1g=-80.26175&1v=ADDRESS&1id=1937731&2c=Moon+Twp.&2s=PA&2a=981+Brodhead+Road

Here is a link to local hotels:

http://www.hotels.com/processRefineSearchResults.do?paging=1&sortBy=PROXIMITY&searchID=&searchMtmPropertySupplierId=&searchType=point&chooseAlternateDestination=false&propertyIdsToCompareString=&destination=usertyped&addressID=&mtnHotelID=&CIMonth=8&CIDay=29&CIYear=2009&COMonth=8&CODay=31&COYear=2009&acDestinationId=&acDestinationType=4&lat=40.5162088572979&lon=-80.21190583705902&pointName=15108%2C+PA+%28Postal+code%29&usertypedcity=15108%2C+PA+%28Postal+code%29&trackType=VE&userEnteredDestination=&defaultLandingPageUserType=&checkIn=8%2F29%2F2009&checkOut=8%2F31%2F2009&numrooms=1&adults%5B0%5D=2&child%5B0%5D=0&hotelName=&allPropertyTypesSelected=on&minPriceStr=0&maxPriceStr=500%2B&minStarRating=1.0&maxStarRating=5.0&guestRatingMin=1.0&guestRatingMax=5.0&sortType=PROXIMITY&pageNumber=1&numProperties=21&checkIn=8%2F29%2F2009&checkOut=8%2F31%2F2009&refined=true

Please enjoy the new photos highlighting some of Tom's life and the Memorial Card quotation for the funeral on the right.

Following is the Obituary Notice for the local papers:

Thomas Kokoski, age 49, of Moon Township, passed away on Wednesday, August 26, 2009 at Forbes Hospice. He was born in Sewickley, PA on Feb. 26, 1960, one of four beloved children to Thaddeus S. “Ted” Kokoski and the late Dolores B. “Dolly” (Swanderski) Kokoski.

Tom grew up in Conway and was a 1978 graduate of Quigley High School. He was a member of the Polish Falcons of America, Nest #182 (Ambridge), the United States Golf Association, the United States Bowling Congress and St. Margaret Mary Church. He was a devoted Notre Dame Football fan as well as an avid Steeler and Penguin fan, basking in their 2009 Super Bowl and Stanley Cup championships. Additionally, in his spare time, he enjoyed golfing, bowling, deer hunting, and coin collecting, among other interests.

Tom had a 28 year airline career with Piedmont and U.S. Airways, stationed at Baltimore, South Bend, Orlando, Pittsburgh and most recently Phoenix. His home base was the family home in Moon Township.

In addition to his father, Ted of Moon Township, he is survived by his three loving sisters Karen Ann Lucci & husband Michael of Richmond, VA, Cathy Ballard & husband Darren of Greensburg, and Teresa Higgins & husband Stephen of Longmont, CO; cherished niece Lindsay Lucci and nephews Jared Lucci, Jacob & Nathan Ballard, and Matthew Higgins; as well as many other relatives and friends.

Visitation Saturday and Sunday 12-4, 6-8 at Copeland’s Funeral Home, 981 Brodhead Rd., Moon Twp. 15108 (412-262-1390) with prayer on Monday at 9:30 AM followed by Mass of Christian Burial at 10 AM in St. Margaret Mary Church. Burial in Good Samaritan Cemetery in Fair Oaks.

Final Farewell

It is with great sadness that I inform you all that Tom passed away at 10:30am Wednesday August 26, 2009, six months before his 50th birthday. He fought a brave battle against his head/neck cancer to the end. Our son, brother, cousin, uncle, nephew, co-worker and friend will be greatly missed and in our hearts forever.

After a couple of weeks trying to manage his recent symptoms, Tom agreed to be moved to the Forbes Hospice care center in Pittsburgh, PA this past Friday. We had hopes of improving his recent symptoms. He was alert and coherent. His decline began on Sunday ... all the nurses, assistants and volunteers at Forbes Hospice did a wonderful job in keeping him comfortable. He was responding to those around him until Tuesday morning when the doctor informed us that he was in the final stages. Tom was comfortable and at peace as he took his last breaths of air on Wednesday in the presence of his loving and devoted father, Ted Kokoski.

Funeral arrangements are being made today and will be posted on this blog later this evening.

Thanks again to everyone for their support.

Love ... Cathy

The beginning of the end.

Dear Family and Friends,

This is Cathy once again, putting Tom's thoughts on his blog. He wants to first and foremost thank all of you for your support, thoughts and prayers. Over the past 2+ years your phone calls, cards, email/blog messages, gifts and visits have touched his heart and brightened his days. His progress as well as his ability to maintain daily activity is steadily declining. Time previously spent golfing, limited biking, cutting wood, working in Dad's yard and tending to his rose bushes is now replaced with trying to get all meds and liquid nutrient in and then resting.

Two days after receiving a more suitable feeding tube on July 22, he experienced severe swelling of the jaw and cheeks along with weakness and the inability to keep down much of the liquid nutrients/meds. New sores had appeared in his mouth as well. Benadryl seemed to help through the weekend and kept him from an unwanted emergency room visit. By Monday, July 27, a majority of the swelling had dissipated but a visit with Dr. Sherry was warranted nonetheless. Dr. Sherry felt, after his examination of Tom's head/neck/mouth/right armpit, that the recent chemo treatment was doing more harm than good. He ordered a head/neck and torso scan for the following day. He also ordered antibiotics for the mouth sores.

On July 29, Dr. Sherry called with the results of the scan. The cancer in his head, neck and right armpit has grown to the point of confirming Dr. Sherry's belief - the treatment is not helping in any way. After some pressing, we were able to get Dr. Sherry's opinion on Tom's prognosis - 2 to 4 months. We, Tom and his immediate family, discussed all the details and agreed that it would be best for Tom to stop all chemotherapy and concentrate on his comfort through full, in-home, hospice care. We hope that some of Tom's frustrations with constantly changing medications and discomfort from their side effects of chemotherapy will be reduced.

So now Tom is getting his affairs in order. Dad and I are helping to get hospice care finalized. Tom knows the roller coaster effect of good and bad days will continue in the upcoming months but we, Tom and his immediate family, will do everything we can to keep him as active and positive as possible.

Since each day is unpredictable, Tom asks that those who wish to contact him do so by email (tkokoski@comcast.net) or blog messages. Please know that Tom will see (or hear from Dad/me) each message but most likely will not be able to respond. The pain medications tends to keep him in a state of haziness and maintaining his train of thought is difficult from day to day.

Since Tom can no longer speak, and he is now living back home and 100% fully dependant on Dad to comunicate via a whiteboard and grease pen, his phone number of 602-881-1311 has been disconnected, so no calls to either Dad's cell or house number if you please. For those of you who have it, Dad's number was simply put on the friends and family plan of sister Teresa and all of Tom's contacts have been rolled over to Dad's phone now.

Independence Day Activities

The 4th of July week was a busy one! Family came to visit; besides my sister's family from Greensburg PA, we also had the Lucci's from VA and the Higgins from CO so the house in PA was filled with much activity. We did some BBQ, horseshoes and fireworks...it was fun and tiresome.

Progress with chemo has been a bit of a roller coaster the past 3 weeks. I've gotten better at managing the pain but chemo side effects of nausea has had the upper hand until this past weekend. Last week I tossed my cookies so much I wasn't sure if anything would ever stay down again. The new nausea medicine I got this week seems to be doing the job at keeping my stomach contents down. I've begun the next round of chemo treatment which consists of 3 weeks of chemo and one week of erbitux. Dr. Sherry would like for me to complete a total of 9 weeks on chemo and plans to do a CT scan at the end of that time. So for now my routine is to spend Friday's at the oncologists with treatment and the other days are mine to do what ever I want :-)

Last week the peg tube was replaced which I knew would happen but the new tube is not the same type as my previous tube and is much more of a nuisance than I would prefer. The new tube protrudes about 6 inches out of my abdomen and is less "user friendly" than the previous one which was more flush with the abdomen. Needless to say this new tube will interfere with my golf stroke so chances of qualifying for the PGA is non-existent (ha,ha!) I'm working to get back the old peg tube version so I can head out to the links asap.

My ability to speak has gone away almost entirely due to the tumor growth occluding the throat. I cannot swallow anything, even my own saliva, and breathing through my nose is extremely restricted as well and so I rely on the trach tube and the feeding tube for air and nutrient intake. The feeding tube has been critical in allowing me to get the nutrition I need to maintain an energy level to fight this battle. I'm completely on liquid nutrition and since the food enters directly into the stomach from the tube I do not have to worry much about flavor...

Finally, I've established a home health care connection with a palliative/hospice program that provides visiting nurses, counselors and other extended services. This service will allow a visiting nurse to come by 2 times a week to check on my well being, assist with pain management, and assist with communications with doctors and service providers. This service not only brings a new level to my care but also support that I and my family appreciate tremendously.

Thanks to all who have shared warm regards, well wishes and prayers...I am grateful for all the support!

Bye for now....
Tom

Treatment #3 and a good report.

Hello All - this is Cathy, Tom's sister, making the update for him. Tom met with Dr. Sherry for a check on his progress and then received his 3rd round of chemotherapy at the cancer center today.

Dr. Sherry was optimistic after seeing Tom saying he looked more robust than 2 weeks ago and he noticed the swelling in the jaw had lessened. He also checked the rash which is a side effect of the chemo. Tom has red and itchy spots on his nose, forehead, scalp and chest. Dr. Sherry was happy to see that the rash was contained to the upper body and rated it a 1 out of 4 (4 being the worst case). He indicated that other patients had more severe cases of this rash covering their entire body and most of them had to stop the treatment. This is the same rash Tom had with the chemo treatments last year in Phoenix so he began using the prescription creme left over from then to help lessen the symptoms. The chemo regimen has him receiving taxotere 3 out of 4 weeks every month. He will receive erbitux every week of the month. Dr. Sherry says the erbitux is a biologic that impedes the epidermic growth. The monthly regimen will continue as long as the effects of the treatment are not worse than the disease. After 2-3 months of treatment the doctor will order scans to determine if there is an impact on the disease.

Tom also had some vomiting and diarrhea earlier this week but that has since subsided. This did not stop him from playing the weekly round of golf with Dad on Thursday. He continues to stay as busy as possible with various activities around the house and yard.

Tom's level of pain was checked ... today it was 4 of 10, last Saturday it was 2, and 2 weeks ago it was 7. As the doctor recommended, Tom had increased the number of times he takes the morphine to 6 times per day. This does seem to help but it varies from day to day. Dr. Sherry suggests we double the fentanyl patch and then 8 - 10 hours later begin reducing the amount of morphine. Reducing the amount of narcotics is preferred as long as the increased fentanyl provides similar relief.

A culture from his mouth was taken today as he developed some type of infection on his tongue. Dr. Sherry feels it is topical and can be treated with antibiotics.

Finally, fighting back!

After what seemed to be eternity, I finally began treatments this past Thursday in a final attempt to slow if not stop the progression of the Cancer I have been battling the past 2 years.
We first met with Dr. Michael Sherry, Oncologist at the UPMC West facility for a brief consultation before the start of treatment, at which time he reviewed the reports of the CT Scan that had been done the previous Monday. The only finding that had never been revealed to me before, but had been there since my birth, was that I was born with two spleens! Not that it will help me in any way, but just a side note I thought worth mentioning. Everything else was pretty much the same as previous scans, soft tissue masses of various sizes here and there throughout my lungs and neck, nothing could be excluded nor could anything be confirmed as far as the squamous cells are concerned.
The nurses at UPMC failed to provide me with the necessary pre-meds required 24 hours before administering of the one drug, resulting in a two day treatment instead of both drugs being administered in one day. No big deal there either, as both days were under 6 hours each in total time spent there.
I have had no side effects as of yet but that is not unusual as it could take several days if not several treatments before these kick in. Dr. Sherry is trying to make sure that the treatment is not worse than the cancer. Also, in our consultation he went over the pain management regimen I was on and suggested that I may have been under medicating myself and suggested increasing the dosage of morphine I am taking to keep things under control. Not so much the dosage but the frequency. I was taking the morphine 3 to 4 times a day and Dr. Sherry suggested I try increasing it to 5 - 6 times a day and if we see less of a roller coaster pattern in regards to the pain then he will increase the strength of the Fentanyl pain patch I wear from 50 MCG/HR to 100 MCG/HR.
Yesterday, the swelling in my face was way down, and my tongue felt as though it had decreased its swelling as well and I was able to brush my teeth and gums with much more ease than in the past.
I continue to keep myself busy outside in the beautiful summer weather by cleaning the garage, maintaining the yard, cleaning and tuning all the small engine equipment we have, splitting logs and hauling them up to the house to burn in the cool evenings in the Chiminea, planting and caring for my tomatoes and roses and slowly replacing the dead grass in the front lawn, after first cleaning the soil (sifting out debris), then testing and adjusting the PH, Potash, Nitrogen and Phosphorus levels to ensure maximum growth after all the backbreaking work. Oh and then there are the practice rounds of chipping 30 to 50 golfs balls daily to try and keep my game in as good a shape as possible. So for now, this has been the best week I have had yet since coming home.
My eating continues to improve and I am getting more creative with the additions to the bland liquid nutrition that I consume for every meal in an effort to prevent it from becoming to mundane. I've incorporated Bananas, cinnamon and green foods into my menu, not all of these in the same meals, but just to mix things up. I am also consulting my juicing books to see what else I can conjure up that would be both tasteful and healthy in my on going fight against this disease in hopes of getting the upper hand and sending it back into a state of remission, hopefully forever!
My next treatment is for next Friday, so I will probably not post again until sometime after that treatment unless circumstances arise that warrant otherwise.
Many thanks again for all the cards, prayers and messages sent my way via, Dad, Cathy, phone calls and the Interent, they are all appreciated!

More Disappointments

Okay, so last week we finally had my appointment at UPMC's Hillman Cancer Center in Shadyside, a suburb of downtown Pittsburgh. After the usual new patient registration process, we met with the Physicians Assistant, Trevor Fieldstein, who reviewed with us the records that UPMC had received from the Mayo Clinic in Arizona, basically covering everything from the start of my journey back in July 0f 2007. After that we then met with Athanassios Argiris, the Oncologist who would be overseeing my treatment at the Hillman. Dr. Argiris advised us that there were currently no Clinical Research Studies open for enrollment and he suggested I begin already established treatments to slow the progress of my cancer. Needless to say I was quite disappointed about the Clinical Studies, as had I know this, we could've begun the other treatments far earlier, instead of giving the cancer a three week head start with no resistance whatsoever to stop or slow the progression of the disease. After some discussion as to whether to begin the treatment at this new facility in Shadyside or revert back to the UPMC West facility closer to our house it was decided that we would return to where we began, as they could administer the treatment at either facility with equal quality and results, so the deciding factor was time and distance.
So a baseline CT Scan has been scheduled for 4:30 p.m. this Monday, June 8th, with a follow-up and hopefully first full treatment for this Thursday June 11th. These should be once a week treatments for 2 cycles, each cycle being 4 weeks, after which more scans would be done to see if the treatments are yielding any results.
I asked Dr. Argiris about future clinical studies and he said he would put me on a waiting list, should any become available while I'm undergoing the current treatment.
So, for now, I've learned to better manage my pain with the medications from the Palliative Care Dr's. My nutritional intake and weight have seem to have stabilized as I seem to have more energy and a desire to get out and do things, although I'm sure the treatments may change that somewhat, but I'll continue to do what I can for as long as I can.
On a good note, the nutritionist we met with was able to secure a vendor to supply the nutritional liquid required for my tube feeding and made arrangements so there would be no cost to me. This is a huge cost savings to me for which I am truly grateful as his can become quite expensive over an extended period of time.
We lastly met with our Collaborative Practice Nurse, Terri Collins, who resides in Aliquippa, Pa. and she is the go to person should I ever need to get a hold of Dr. Argiris. She was very helpful, informative and pleasant to deal with, stressing that if we ever need anything to not hesitate and call her with any issues and if she couldn't take care of it or get the answer, she wold find out who could. She seems to be a real go getter.
So with that, other than speaking, I've been feeling pretty good. My lower face and jaw continue to swell on both sides whether it be from lymph fluid back-up or the spread of the disease, but it is visually noticeable, and I still have constant pain in that area, even with the different pain medications that I am on.
Both my Dad and sister Cathy attended this appointment, for which I am grateful to both of them, as they more often than not think to ask questions that I do not.
Prior to this appointment, Dad and I attended game 3 of the Stanley Cup Finals in which the Pittsburgh Penguins defeated the Detroit Redwings 4-2. Many thanks to brother-in-law Darren for securing the tickets, and to Karen, Mike, Cathy, Darren, Teresa & Steve who gave the tickets to us as a gift. It was an awesome time and I will be posting a few pics from the game as soon as I get them developed.

Back Home Again

After an exhausting week of finishing up work, Dr's appointments almost everyday and packing up my belongings, Dad and I left Phoenix on Sunday May 17th at 11:59 a.m. It was 102 degrees in AZ. and when we landed in Pittsburgh it was 57 degrees! What a welcome change that was.
On approach into Pittsburgh it was still light enough outside to see the green rolling hills of western Pa. and I was even able to spot the churchpew bunkers on the 18th fairway at Quiksilver golf course in Midway. Oh, I could hear the putting greens calling out my name!
In Phoenix I received another memorable send off, with many of my co-workers and friends meeting me at the gate with hugs and well wishes for what the future may bring. The bulkhead of the First Class cabin where Dad and I were seated was even decorated with blue and white streamers with a "We Will Miss You" sign attached to the wall as well. Upon landing the First Class flight attendant presented me with a Victoria's Secret Bag and said "This is from your co-workers" I won't reveal the contents of the bag as it is an inside joke from the POC department, but I must say it did make me laugh, and I still do have the original one, so now I have two! The card was very touching as well!
Okay, back to the week of medical appointments. In brief, I had the consultation on Tuesday for the feeding tube, meeting with first the Dr. followed by a dietician/nutrionalist and third by a nurse who gave me an orientation on the feeding tube, how to use and care for it and possible complications. After all three consultations were completed R.N. Laurie Rentz came in and said that Dr. John Dibaise, who I first met with and who told me that he probably would not be doing the procedure because of his schedule, would not only be doing the procedure but that it would be done the following morning at 8:00 a.m. Totally unexpected by me but welcomed just the same. By the way all these appointments were being done at the Mayo Clinic. So needless to say I had to miss work on Wednesday as check in at hospital was set for 6:30 a.m. All went well and I was out of there by 11:00 a.m. I spent the afternoon sleeping off the sedative back at home.
Thursday I had to report back to Mayo Clinic to have follow-up chest X-rays and lab work done as a result of my coughing up blood spell I had the week before, and then on Friday I had to go back again to have the feeding tube checked to make sure all was okay with that. It was then that I was told by Dr. Dibiase that they should've put in a longer feeding tube, as the one they used was too short and did not allow the preferred 1/4 inch of slack between the valve and the skin of the abdomen. Dr. Dibiase said that these type of tubes need to be changed out about every 3 months anyway and a longer one would be swapped out at that time. Well, the following day, when I decided I wanted to eat, I hadn't used the tube yet due to it still being tender from the procedure, I had one heck of a time connecting the tube to the locking valve as it was too tight against my skin and there were and still are 3 suture buttons in place around the valve, keeping the stomach wall pulled up against my abdominal wall. Dad tried unsuccessfully to get it attached as well, and finally, my roommates girlfriend Cathy, after several attempts was finally able to get it in and locked down. We had to do with me lying on my back, and after that I chose to leave it in until I either get the suture buttons out or the whole thing changed to a longer one that give me more flexibility. The fact that it was still tender didn't help any either, but it worked and I've been able to increase my nutritional and liquid intake, which was what I seeking to accomplish.
So that is where things stand for now. Thursday I meet with Dr. Frank Kim, a G.I. specialist to discuss the feeding tube and what to do next and then on Friday I meet with my old friend, Oncologist Dr. Edward Balaban, to see what plan of action he has in store for me. I have had all my medical records from the Mayo Clinic forwarded to UPMC, with the help of my Dad since it is still to painful for me to carry on any conversations of length, so they at least will be up to speed with what I've gone through over the last several months.
Lastly, I would be remiss if I did not mention the "Good Luck" get together that was put together at the airport by members of the management team and the POC department. They had set up a "Tom's Tiki Bar" complete with fresh fruit smoothies (Alcohol free), cake and cookies. Many of my "East" co-workers who were on duty came by to wish me the best, along with most of the management team that were also on duty, along with some original America West employees with whom I had worked closely with over the last 2 plus years. I was presented with a plaque recognizing my years of service from 5/5/81 through 5/15/2009, a huge card signed by dozens of my workers and a "Pittsburgh Steelers" themed A-319 model airplane, that also had a brass plaque adorned to the base saying "From your US Airways Family in PHX." It was very touching!
So, needless to say I will spend this week trying to recover from such a hectic week last week before jumping into the next round of whatever is in store for me!
I will update this weekend after my appointments on Thursday and Friday!
Til then,
Love
Tom

The Tube is in!

Okay, after having an afternoon of appointments yesterday, that consisted of consultations with a Dr. of Gastroenterology, Dr. John Dibaise, Registered Nurse Laurie Rentz, Dietician Sherry Tarelton and more lab work, much to my surprise it was decided to implant a feeding tube today at 8:00 a.m.
During my consultation with Dr. Dibaise, I revealed to him that I had previously had a PEG tube, to which he had no knowledge of. Whether this had any bearing on things or not, I don't know, but Dr. Dibaise told me that he probably would not be doing the procedure. By the end of my consultations, not only was the procedure set up for the first thing the following morning, but also that Dr. Dibaise would now be doing the procedure!
During the consultation with R.N. Laurie Rentz, I happened to mention to her the bleeding episode I had experienced the previous day, and she took the info I had given her and went and gave it to Dr. Dibaise. This information lead to a change in not only the type of feeding tube to be used but also the method in which it would be put into place. Originally I was to receive the exact same type of PEG tube I had received in July 2007. This was the one that was inserted down through the throat and pushed outward through the stomach and abdominal wall, and had about 8 to 10 inches of tube hanging out of the mid-section though which the food/liquids could be administered. Effective but very cumbersome and uncomfortable, especially when it came to swinging a golf club!
Because of the swelling in my throat and the bleeding episode, Dr. Dibaise decided instead to use what is called a mini Balloon Button tube. This tube is inserted from the outside in, where an incision is made into the skin and abdominal wall, the tube is pushed into and through the stomach wall, and then a little balloon is filled with water, which is what keeps the tube in place. So, on the outside of the skin, there is only a little valve, probably no bigger than an eraser off a pencil. The feeding tube extension is connected to this valve and locked into place so that food and liquids can be administered, and when finished, removed and the valve capped off until needed next. A weekly check of the balloon is required to make sure that it contains the correct amount of water to prevent the tube from possible slipping out of the stomach, which if that did happen it would have to be reinserted by a nurse. R.N. Laurie Rentz said it was similar to an earring in the ear, where if you were to take the earring out, a hole would still remain and would remain there for quite sometime before closing shut. So this is the same in principle, except I think the hole in the abdomen would close a little more quickly, but not instantaneously. Let's hope I don't have that happen.
So my day began at 5:00 a.m. with a 6:30 a.m. check-in at the Mayo Clinic Hospital. Things went much better this time than last, and surprisingly the 8:00 a.m. procedure was relatively on-time as I was prept and ready to go by 8:05 a.m. and at 8:10 a.m. I received the sedation cocktail, which put me on the dreamland express. The procedure was relatively painless but when I awoke in recovery and for the remainder of the day, I felt like, and even though I never had, I had been shot with a small caliber weapon. R.N. Rentz said that there would be some pain and it would subside over the next 3-4 days, but total healing would take about 8 weeks.
So at least now, I do not have to be concerned about dehydration or not getting enough nutrition, as I now have a secondary way to receive these if I cannot do so orally. That is a huge relief to me!
No more Dr's appointments for the rest of the week except for follow-up with R.N. Rentz or if something else should crop up such as infection, abnormal leakage/oozing. So hopefully my next appointments will be with the Dr's at UPMC back in Pennsylvania.
My last day of work will be this Saturday and then I will go out on FMLA until that is exhausted and then I will continue to stay out on medical leave until fully recovered or the other.
Many "Thanks" once again for the cards, comments in my blog and all the well wishers out there!
I will continue to update as warranted and hopefully my next update will be from my home back in Pa.
Love to all,
Tom

It's Final!

Well, after meeting last week with the Oncologist team from the Mayo Clinic, and going over the options available to me, I have decided once again to return to Pittsburgh to resume my care with the team at UPMC in Moon Township.
Once again my decision was driven mostly by the fact that I have no family support out here and it would be asking too much for family members to make periodic/rotational pilgrimages out here to get the support I will be needing.
The Mayo Dr's also saw that I had received my original treatment in Pittsburgh, and it was their assessment that wherever I begin my treatment, than that is where it should end. In other words they didn't want to start treating me and than hand me off to UPMC some weeks or even months after starting. They just didn't think this would be wise from a strategic perspective. Also, after this last week at work, I was able to come to the realization firsthand, that I am not nor probably will ever be 100% again and it wouldn't be fair to my co-workers for them to bear the burden that I would put on them by not being able to perform 100%. So as soon as the Mayo Clinic and UPMC are able to coordinate and agree on a start date for treatment, then that is when I will head home. I hope for that to be sometime this week. I've already packed most of what few belongings I have out here, and several folks from US Airways have graciously offered to drive my car back to Pittsburgh for me. This will take a lot of my Dad, as he and I will now be able to fly back and get home in 4 hours instead of taking 3 days to do the drive.
Eating and drinking continue to be problematic, today's weigh in found me to be below what I was when I graduated high school, some 30 years ago. I tipped the scale at 176.9, at graduation I was 178. Never thought I'd see that again!!!!!!!!!!
Also today I was speaking to a representative on the phone from Fidelity Magellan in regards to my retirement account when my voice became rather gurgurly. I went to clear my throat thinking I would just expel the usual amount of mucous, but it was a rather large amount of blood. It also came from my nose and trachea tube as well. Enough to where I was scared into calling the Mayo Clinic, because I didn't know what was going on. I hadn't eaten anything all day and this was shortly after the noon hour and had only had a few sips of cold water. The Mayo only returned my call once, going over the symptoms and asking if it had subsided, which by then it had. The R.N. with whom I had been speaking, looked over my chart from my last blood work and said she would discuss it with one of the Dr's and get back to me, but alas no one called back. So, maybe no news is good news??????? Sometimes I don't really know what to make of these folks. They have you fill out all these questionnaires, but when something like this happens, they do nothing. I've been afraid to eat or drink anything else for the rest of the day for fear of another session like that, but I did manage half a glass, (large glass) of iced tea, while watching the Penguins lose to the Capitals in overtime at my favorite sports bar, Gallagher's, here in PHX. So far no reprisals!
Tomorrow, I have three appointments with three different specialist at the Mayo Clinic in regards to the feeding tube. These are all labeled as consultations, although all three specialists are all from the same department. I'll say this, I'll be damned if I'm going to pay them three co-pays if they all three say the same thing. Each appointment is separate and they are all on the hour starting at 1:00 p.m.

Back to work!

Well, after yesterdays appointment with the Palliative Care Dr. who loaded me up with 5 prescriptions, which haven't been filled yet, I returned to work today which ironically was also my anniversary date of hire with Piedmont Airlines. So today I began my 29th year in the airline industry.
It was a tiring day, not so much because of the workload but more because of the pain medications I am currently on. There were spouts throughout the day that I was so fatigued I could hardly keep my head up, but I made it through it. Tomorrow I will try again and I hope that the more I do it the more I'll get accustomed to the 8 hour work day.
Tomorrow I have to go have lab work done before my appointment on Thursday with the Palliative Oncologist and then next Tuesday I have a consultation about the peg tube at 1:00 p.m. So I hope to work Thursday thru Saturday and then take Sunday and Monday off to continue to build up my strength.
My tongue and the back right side of my throat is still sore and problematic when it comes to talking and swallowing, but hopefully the new prescriptions that I'm waiting to have filled will bring me some relief in the very near future.
That's it for now, we'll see what the Oncologist has to say and I'll probably post again on Friday.
Til then!
Tom

A busy day!

Thursday, April 30th was a busy day with 4 appointments at both Mayo Clinic campuses, the Scottsdale Campus and the Phoenix Campus. Fortunately both are equal distances from my home and are relatively close. The first appointment was for a follow-up X-ray of my chest to check and see how my right lung was doing, as in was there any sign of collapsing, followed by an appointment with a new to me, Dr. of Radiology Michelle Halyard.
However, before leaving home I decided to weigh myself since it had been about two weeks since I last weighed myself, and I had gone some 36 hours with nothing but intravenous solutions since shortly before/during and after the biopsy. They would not discharge me from the hospital on Tuesday until I had consumed everything they had given me on my breakfast tray, which consisted of jello, clear broth, some type of fruit juice drink and black coffee. I had all but the coffee. Well, needless to say I was shocked when I weighed in at 183.7 pounds when my last weigh in was recorded at 192.2 pounds! Since my throat was still sore from the biopsy and I had no desire to eat or drink anything I began to seriously consider the consequences of becoming dehydrated and or mal-nourished.
When I met with Dr. Halyard, who by the way told Dad and me that she was originally from Homestead, Pa. - home of Kennywood Park, she had already received and reviewed all of my records from my previous radiation treatments, both the ones in Pittsburgh and the ones in Phoenix, and we went through a pretty thorough question and answer session to make her more familiar with me and my case. I found her to be very pleasant and compassionate. After the interview she performed a physical examination of mouth and neck are and also both right and left axillaries of my upper chest. She concluded that more radiation treatment to either of the two areas would be more detrimental than worthwhile. Mainly because of the amount of treatment already received there, but also due to the fact that the disease had now spread to a wider area and was now below my clavicles in the mediastymun, which is the upper middle chest between the lungs and the heart. Dr. Halyard said that perhaps there would be some type of chemotherapy that might be used in an effort to slow down the progression of the disease but she would leave that determination to her counterparts in Oncology, with whom I have an appointment with next Thursday.
I had then mentioned to Dr. Halyard my rather large loss of weight and discomfort in eating and swallowing and I requested that a feeding tube be re-implanted to prevent the dehydration and mal-nutrition I spoke of earlier. Dr. Halyard said she thought it was good to have a back-up and graciously placed an order for this right then and there in the office. As of this writing I have yet to hear anything as to this procedure being scheduled. Our appointment ended there and it was back to the house for a quick snack, jello and whipped cream and then off to the Phoenix Campus to meet with Dr. Hinni for post surgery follow-up and then meet with the Mayo Clinic Social worker.
The appointment with Dr. Hinni was rather droll, nothing new to add from when I saw him the day after the biopsy, I guess they just want to really make sure you're coherent and absorbing everything they are saying to you. He did offer one suggestion based on his experiences and things he has seen in his career. He said when you think there is nothing more that can be done, "Just give up" He said that he has seen Dr's continue to do more and more and more when there is clearly no chance of survival and he basically said it would be up to me to say "Stop, enough is enough!"
With that I had asked him if he had the results of the chest X-Ray from earlier in the day at the Scottsdale Campus and he was able to access it on his computer and said that everything looked "Perfect". Followed by his staring me in the eyes, as if maybe he were looking for signs of fear or maybe that I didn't "get it", I'm not sure what, but I thanked him for his efforts. He told me to keep in touch and I told him I had a blog. He said he tries to stay off the computer as much as possible and I understood where he was coming from, but he graciously took the blog address and said he would check it out. I told him that I don't update it daily and if he doesn't get to check it out than that was okay, too. At least he has the address. He will be the first Christmas Card I address this December, just to let him know that I'm still around.
With that we met with the Social worker, again nothing big there, a lot of repeating the same information, as if he were trying to fill the time. Maybe I just wasn't prepared with the proper questions to keep him on his toes. Maybe next time I will have more questions to ask. My first time with a Social worker and I wasn't and am still not sure what they can do for you.
So I have the weekend free to start packing up for my trip home and then on Monday I have a Specialty Exam for Palliative Care, followed by Thursdays appointment with the Oncologist and somewhere in between I hope the Peg-tube procedure.
Many "thanks" to one and all who have sent emails to this site or to my personal sight for their expressions of concern and prayer. All are very much appreciated and I draw strength from these and the cards I receive in the mail. They inspire me to do my damnedest not to let anyone of you down, after all the support you've given me!
Love to everyone,
Tom

From bad to worse.....

Well, after months of complaining to various Dr's about my ever swelling tongue and increasing difficulty in swallowing and speaking, and after all these so called learned Dr's waived it all off as to the side effects of radiation, I persisted and did not let up and continued to push for scans and tests and the end result is my cancer has been on the move and was probably never fully eradicated from my first chemo/radiation treatments of a year and a half ago.
After several sessions with Dr. Michael Hinni of the Mayo Clinic, I was finally able to convince him to biopsy some of the "hot spots" that had shown up on recent scans that he had ordered, and the one spot that they were able to biopsy came back as cancerous. It was a lymph node on the right side of upper neck near the back of the right jawbone. After these results, Dr. Hinni recommended surgery to remove all the lymph nodes on the right side of my neck in the hopes of removing any and all cancerous tissues that he could. But first he wanted to biopsy the original sight of the first tumor on the left base of my tongue, as if this came back as cancerous then he might have a do a more major surgery to remove more tissue of the tongue and other areas of the throat.
The pre-surgery test went well with the exception of two lesions on my right lung of which they were unable to determine what they were, as in cancerous or not. Chest X-rays were followed up with a CT-Scan, which revealed nothing that alarmed the radiologist who read the report immediately following the scan, but Dr. Hinni wanted to be 100% sure so he ordered a lung biopsy to be performed on the same day of the neck biopsy to see what the results showed. If the results came back as cancerous, then Dr. Hinni would not go forward with the neck biopsy as his reasoning was that if the lung was diseased, then cutting into the neck and throat would not be of any good since the disease had spread to the lung. Fortunately, this was not the case as the lung biopsy came back as negative and we proceeded with the neck biopsy.
Dr. Hinni told me that if cancer was found at the original tumor sight he would not proceed any further until I was awoken and spoken to about the results and a plan of action would be agreed upon by all parties involved. If not cancer were found then he would proceed with a right neck dissection to remove the lymph nodes of that side.
As I awoke in the recovery room, I was in great pain on the inside of my throat, similar to the pain one feels after having tonsils removed, but as I touched the side of my neck I felt no pain nor was there any evidence of surgery being performed there, so I kind of had a feeling that Dr. Hinni had found cancer at the original sight. Later that day, after being admitted to a private room for an overnight stay to manage the pain of the biopsy, my sister Teresa, who flew in from Denver, Co. and my Dad who also flew in from Pittsburgh to be with me through this revealed the findings of the biopsy. Dr. Hinni had found cancer, not on the surface but within the tissues of the back of the throat, both sides of the base of the tongue, the esophagus, larynx and vocal cords and along numerous nerve endings and blood vessels. Teresa and Dad both said that Dr. Hinni would be in the following day to discuss the results with me.
After a painful and restless night in the hospital, although the nurses care was exceptional, Dr. Hinni arrived at 8:00 a.m. with two of his associates to discuss the findings and subsequent plans for follow-up action. He basically said that the cancer was so widespread that doing a radical neck dissection would not remove all the cancer, would not prolong my life and would probably cause me great discomfort and I would lose my ability to eat and speak altogether. He was very hesitant about removing my tongue and voice box saying that it would be about a 12 hour operation and that it would not prolong my life at all. In short, he said all that could be done at this point is to keep me as comfortable as possible and possible slow the progression of the disease with chemotherapy.
So, I left the hospital around 10:30 a.m. that same day and will meet again with Dr. Hinni tomorrow along with a team from the Radiation and Oncology departments of the Mayo Clinic to see what they have to say. I will also meet with a representative of a Social Services agency and see what he has to offer.
I am now contemplating my future and how I want to live it out. While Dr. Hinni said he could not give me a timeline, he did say that disability was probably in my future so I now have to decide if I should keep on working or return home and live out my remaining days doing as Dr. Hinni put it to Teresa and Dad, "doing what Tom wants to do". So this is where things stand as of for now, many decisions will be made in the next few days/weeks and I will continue to post updates as warranted on either my decisions and or condition. Thanks for all your continued prayers and support and I will continue the fight to the best of my ability!

Overdue Update

Let me start by apologizing for not updating my blog more often. I just haven't felt up to over the past few weeks, but here it goes!
My 25 radiation treatments to my right axillary finished up on Feb 20th, followed by a quick trip back to Pittsburgh for a routine dental appointment, then back to Phoenix for a follow-up with Dr. Kukunoor, my oncologist. His exam did not address my right axillary at all, but rather the area around my collar bone and neck. He had asked me how my breathing was and then went on to say that the last CT scan I had in January revealed two spots that caught his attention. One was a nodule on my right lung and the other was a spot on the right side of my neck, which is the opposite side of where the cancer was originally spotted. Dr. Kukunoor stated that the spot in my neck could be from swelling or could be something other, and the spot on the lung was unknown. He told me he wanted to wait 3 more weeks before having a scan to see if these two areas changed in shape or size. I told Dr. Kukunoor that I did not want to wait 3 more weeks and wanted to have a scan done as soon as possible. He obliged my wish and set one up which was conducted this past Tuesday. It was a scan of the soft tissue of the neck and a full chest scan. Dr. Kukunoor called me at work yesterday (Wednesday) to give me the results and he said that there had been no significant change to either area and also attributed the spot on my lung to a form of pneumonia most likely caused by aspiration of food particles and liquids. I asked him just to reconfirm if this was good news and he said "Yes". I then went on to tell Dr. Kukunoor of relapse of difficulty swallowing and major swelling of my tongue. He had no explanation for the tongue swelling but did say that I could probably use another stretching out of my esophagus as the scar tissue was probably constricting that area again. I called the Dr. Gelzyad the G.I. who did the procedure last fall but he was reluctant to do it until I get another Endoscopy from my new ENT Dr. Hinni of the Mayo Clinic. I called the Clinic and was able to get an appointment for Thursday the 12th of March and if Dr. Hinni gives me the go ahead I will contact Dr. Gelzyad to have the procedure performed and get some from relief from eating and breathing. My tongue has also become very sensitive to heat both in the form of temperature and spiciness and me eating has been reduced to mostly things that require minimal chewing such as pasta, macaroni and cheese, yogurt, pudding and jello's. Everything else is just to difficult because my tongue seems to be filling most of my mouth. I have seen some significant reduction in the swelling over the last two days so perhaps things will return to normal soon. That's pretty much it in a nutshell for now and I will probably post another update in about two weeks after I see Dr.'s Hinni and Gelzyad.

Radiation to begin...........

Well, last Thursday I finally met and had my conulstation with my newest Radiation Oncologist Dr. Patrick Miller. The consultation went fine and even though I have already been through this I still had some questions and Dr. Miller was able to answer them all to my satisfaction. I fell very comfortable with him, although I must say that I was suspect when I first saw the location of the facility and the facility itself, not to mention it looked like Dr. Miller had slept in his shirt so the professional image was lacking. However, my suspicions were lifted when another patient in the waiting room, an elderly gentleman told me that he had done a lot of research of different facilities in the valley on the Internet and his conclusion was that this was one of the best. They were in their 20th year in the same location so I guess that's good for something.
Dr. Miller said I will probably receive 25 treatments versus the 30 that Dr. Kukunoor said I would receive and after some discussion about my work schedule they were able to accomodate me in such a manner as I shouldn't have to miss any work. The treatments will be Mon thru Fri at 4:15 p.m. and shouldn't take more than 10 to 15 minutes.
Today, Monday I went to the another facility over in Sun City, about 20 miles from where I live for a one time alignment session, to align my body using lasers to the radiation machine. similar to the same thing I went through last year. Later this week, after the "Plan" is developed I will go over to more closer facility for a "Dry Run" where they will do everything they will when the treatments start except for actually adminstering the radiation. Dr. Miller said aside from a little sunburn in the right axillary area I shouldn't have any other side effects.
So, I'm planning on the treatments starting on Monday January 19th and ending on Feb 23rd if all goes according to plan.
Aside from some facial and tongue swelling this weekend and a massive area of pain that flared up last night in the right axillary area, I'm feeling alright. I am concerned about the pain that flared up last night because on a large scale it is similar to the pain I had in my neck last year when I was first diagnosed. I saw Dr. Kukunoor last Wednesday when I was coughing up some bllod through my tach and it kept increasing and suring that visit I told him the right side of my neck was swollen and numb, he looked me over and said he didn't see any noticeable difference and left it at that. He did order a scan to check my lungs for blood clots but I have yet to hear from anyone regarding scheduling an exam. Apparently we are waiting on Blue Cross Blue Shield to give their approval, in the meantime I could die! Aren't insurance companies wonderful!