Friday, August 22, 2008

The Latest

Well, having returned from a fabulous vacation back in Pittsburgh from August 5th through August 20th and seeing both my dentist and ENT Dr. Straka, here is the latest update.
My dentist appointement with Dr. Edward J. Dengel went fine, with no signs of cavities and or decay of any kind. This is important as my condition of "Dry Mouth" can promote bacteria and cause numerous problems if not taken care of daily. This include flossing, cleansing with a water pik and the ususal brushing of the teeth, gums and tongue. X-rays also showed no signs of any imminent problems.
My appointment with Dr. Straka was routine as well, with the exception of my describing to Dr. Straka how swallowing for me has become more difficult over the last several weeks. Dr. Straka did reduce my trach tube once again from a #6 to a #4 but recommended we leave this one in for a period of one to two years, mostly as a safeguard to keep an airway open in the event of some unforseen swelling such as I'm experiencing right now. Although this swelling does not affect my breathing at this time. Dr. Straka did order a Barium swallow study and it was determined that some foods particularly liquids are going in to my windpipe but no explanation was given as to why except that the little flap of skin that is supposed to prevent this is weak and not doing its job to a 100%. The speech therapists who were present during the swallow study had no recommendations for exercises, only to eat a diet of softer foods and thicker liquids to help prevent the foods from going down the wrong tubes. They also querried me as to whether or not I had had a recent cold or if any other changes had occured in my lifestle. I told them of my recent change to the South Beach Diet to try and improve my eating habits and also of a liquid supplement that my Master Herbalist Mary Phoenik had recommended I take that aids in celluar reconstruction. That supplement consists of juice from the Mangosteen fruit and it has yet to be determined if my swelling in the throat can be attributed to that or not.
This coming Monday I go for a PetScan and will review the results of that with Dr. Kukunoor on Friday the 29th of August. I will speak to him about my swallowing issues as well and see what he has to say about that.
My vacation home could not have been better, the weather was fall like and we did not turn the air conditioner on once the whole time I was home. Dad and I played a few rounds of golf in order to tune up for the Polish Falcons Golf Tournament and I shot 4 consistent 9 hole rounds of 46-46-46-42, and struck the ball better than I ever have. Following the tournament I shot a 39-47 round at Glengarry Golf course near Latrobe with my brother-in-law Darren. Dad was all golfed out by then but we did manage to get in one more round out in Ohio at Copeland Hills where again I played very well, but I can't remember my scores.
I got to see a lot of old friends at the Falcon Golf Tournament and enjoyed the two day affair. We also attended on Pirate baseball game with my sister Cathty and her family on Sunday. It was a beautiful sunny day abd a good crowd was onhand but sad to say the Buco's lost:(. But it was nice to spend the afternoon at the park.
Aside from that we did some yard work down in the woods behind the house trying to take back the land from the onset of Kudzu, which like cancer will kill if not killed first. I seem to have taken on a great obsession to rid our property and that of the neighbors of this creeping vine that will cling to and kill just about anything in it's path.
My next planned trip home is the weekend of September 6th to participate in the Polish Falcons District IV golf tournament to be held at Harmony Ridge (formerly Ambrdige Golf Club) of which Dad is the Tournament Chairman.
I will post another update after getting the results of my upcoming PetScan.

Wednesday, August 6, 2008

It's Definitive!

Well, several months have passed again since my last update, and my how time flys! Not much has changed since then except that I finally got a definitive ruling on my pending neck dissection.
After an appointment in Pennsylvania with my ENT Dr. Straka, we discussed the neck dissection that Dr. Kukunoor in Phoenix keeps pushing for. Dr. Straka felt that a neck dissection at this point in time would not be beneficial for the following reasons: too much time has passed since the end of Radiation in December ; and the neck dissection would not get to where the original tumor was located which was in the base of my tongue.
Dr. Straka referred me to another ENT in Phoenix who is affiliated with the Mayo Clinic, Dr. Michael Hinni, in order to get a second opinion. This after I advised Dr. Straka of my decision to terminate my short lived relationship with Dr. John Milligan, another ENT in Phoenix because of my dissatisfaction with his office practices.
I contacted the Mayo Clinic in early June and made my appointement to see Dr. Hinni, which was set for July 17, 2008. The Mayo Clinic requested the slide of my Biopsy that was performed in January along with my most recent PetScan results and other medical records that Dr.traka forwarded out to them without delay. The initial meeting with Dr. Hinni included a preliminary visit with his assistant which covered the most basic information along with a series of questions regarding my current status. Dr. Hinni then made his appearance and did a more thorough examination of my mouth and neck including another Endoscopy of my throat. He had already reviewed my PetScan and had it displayed on a laptop computer that was in the office, and it was quite interesting to see that display. Dr. Hinni recommended that I get another CatScan with contrast dye in order to overlay that onthe PetScan. He went on to explain that, that enable him to see more when they overlay the two, so a CatScan was scheduled for the following Monday July 21st again at the Mayo Clinic. A follow-up appointment was tentatively set for August 5th as Dr. Hinni was going out of town, however if need be an earlier appointment would be made if the CatScan revealed something that required immediate attention. That did not materialize!
So, yesterday August 5th I saw Dr. Hinni and my meeting with him lasted no more than 5 minutes. Dr. Hinni said he saw no revelation of cancer and concurred with Dr. Straka that a neck dissection at this time would not be beneficial, mostly due to the amount of time that had elapsed since the end of radiation. He encouraged close monitoring for the next several years with regualr PetScans and other tests and said he would be more than happy to offer his services if I wished. I feel very confident in Dr. Hinni and as long as I remain in Phoenix, he will be my go to ENT and I will continue to retain Dr. Straka in Pittsburgh for when I return home either for short stays or hopefully permanently.
Dr. Straka in June did reduce my trach tube from a #8 to a #6 and will hopefully reduce it again from a #6 to a #4 next week when I see him on Wednesday August 13th. Dr. Milligan wanted to go straight from a #8 to a #4 which Dr. Straka was against as he wanted to take smaller steps in this process. Just another reason for my decision to dismiss Dr. Milligan.
My most recent photo is from a long weekend I took in June when I traveled to Durango, to spend some time with my sister, Teresa and her family, who were on a two week vacation taveling the Southwest. We were on a narrow gauge train ride from Silverton, Colorado back down to Durango when Teresa snapped the picture. We had a great visit but the time passed way to quickly, but it was nice to get out and about!
I leave for a 12 day vacation back to Pittsburgh this coming Saturday and look forward to spending time with my Dad and seeing all my old friends from the 'Burgh!
So until my next update, "Thanks" to everyone who continues to keep me in their thoughts and in their prayers. As always, I appreciate you very much!

Saturday, May 3, 2008

Long Overdue Update

Well, it's been a little over two months since my return to work in Phoenix.
Needless to say my return was just as touching as my send-off when I left in July 2007. Everyone was excited to see me and some expressed their disbelief that I was back "So soon"! Everyone in management couldn't have been nicer in making my transition back to the workplace as smooth and easy as possible. They all made sure that I didn't overexert myself or try to take on to much to soon.
I must admit that in the first few weeks, it took all I had just to make it through an eight hour day. What exhausted me most was breathing and talking, because of my trach being capped so that I could speak. But I learned how to manage around that and it has gotten much better.
Shortly after arriving back in Arizona, I had an appointment with my Oncologst Dr. Kukunoor,
who wanted me to have a PETScan, so we had one scheduled at the end of my appointment. The appointment with Dr. Kukunoor was pretty routine, more of a recap of what I went through back in Pittsburgh to bring him up to speed. However, he did bring up his wanting me to have a neck disection and seemed surprised that the Dr.'s back in Pittsburgh did not do one. I told Dr. Kukunoor that my ENT, Dr. Straka back in Pittsburgh said there was a chance that surgery would be required after the radiation, but after my PETScan in January, he apparently didn't see the need for one. I told Dr. Kukunoor that I would be seeing Dr. Headley and that I would speak with him about it.
Prior to seeing Dr. Kukunoor I was taken to the area where Chemo is adminsitered and an attempt was made to draw blood through my port, to which there was no return. After trying to clear the port it was determined that it was clogged and the nurse said she was going to order a port study and that if they couldn't clear the port than it would have to be removed.
About two weeks later on a Friday I received a call to schedule the port study, so it was set up for the following Monday at 10:30 a.m. It was a short study, done while I was on the operating table. It was determined that it was curled and the injecton was clogged from going through so they commenced the procedure to remove it and I was out of the operating room about 10 minutes later! Recovery took a couple of hours for the sedation to wear off and then I was home by 3:00 p.m.
Well, the next week I saw Dr. Headley and he did his usual Endoscopy and basic examination and then dropped a bomb on me and told me that he was going to be retiring in the next couple of months. Well, with that news I completely forgot to mention the neck dissection to him! He did want to see me in another six weeks so I made it a point to remember the neck dissection for that appointment.
My next appointmet with Dr. Headley started again with the Endoscopy and Dr. Headley said he wanted me to have sleep study done with my trach capped. He had asked me if I slept with the trach capped and I told him no, that it was easier to breath with the uncapped one in. I then mentioned the neck dissection to him and Dr. Headley said that there was a lot of controversy about neck dissections. I then told him of the differences between Dr's Baliban, Straka and Kukunoor and he then did a 180 on me and told me that he wanted me to think about it. I said, "What is there for me to think about? I'm no Dr. you either tell me I need it or I don't!" He then went into a dialogue of how it isn't an exact science and no one knows for sure and blah blah blah, the usual stuff you get from Dr's. Dr. Headley then said he was going to refer me to a new ENT Dr. James Milligan, for the sleep study and futher discussion about the neck dissection. Dr. Headley did say that if he were to have a neck dissection done, he would want Dr. Milligan to do it because of his experience with these types of operations. So I have an apointement to see Dr. Milligan on May 28th.
A week after having my port removed I contacted Dr. Kukunoor's office about having an order written to have my "G" tube removed, as I had mentioned that to the surgeon while I was on the table having my port removed, and she said she would've been happy to do it, but she needed to have an order for it. Since I hadn't been usng it I thought I might as well have that taken out as well. So the order was written and exactly a week after having the port removed I had my stomach feeding tube removed. This was little quicker and I was able to leave within 30 minutes of the procedure being completed and it now abot 75% healed. It heals from the inside out.
So all I have now is the trach tube to be removed and hopfully that will be soon, maybe by my first anniversary of the start of this journey.
All in all progress has been good and steady. My stamina has gotten much better since returning to a full work schedule. My sleep is back to a regular 8 hrs instead of the 10 to 12 I was requiring when I first returned to work, although every once a while I require a little more sleep and yesterday I even went to the YMCA for a light workout! I did 30 minutes on the Lifefitness stationary bike and hit about 6 machines with 3 set workouts on each machine. It was a good feeling to exercise again and I look forward to going again. I even shot a little basketball as the court was completely empty so I walked between baskets sooting layups and ran the full-court once but that didn't go over to well. Too early for that yet!
I also joined the summer bowling league and will begin bowling on May 13th, which was part of my reason for joing the "Y". I need to get my legs built up for bowling but my overall body tone as well!
My next PETScan is scheduled for Aug 28th, unless something crops up and warrants moving that up earlier.
I'll be back in Pittsburgh June 5th through Jun 13th to visit Dad and hopefully play some golf.
And then I plan on being back in August for the Polish Falcons National Golf Tournament!
That's it for now. Please accept my apologies for not updating my blog sooner and for the length of this update!
Tom

Tuesday, February 19, 2008

Phoenix Bound

Well, after seeing my Radiologist Dr. Scicutella on Thursday, I was given the okay to return to work in Phoenix. Although, Dr. Scicutella did say that the chance for a reccurence was high, and that I would have to monitored closely by my ENT and other Dr.'s out there. The first two years are the most critical and then after 5 years if I am still clean, then I would be considered out of the woods! So there is still a long road to tow, but at least I'm getting started to being back on track to resume a normal a life as possible after going through what I have.
So, Friday and Saturday were spent packing things up, although I'm not taking that much with me, just the bare essentials.
Sunday was spent relaxing at my sister Cathy's home with her family. We had an early afternoon dinner in which we enjoyed homemade stuffed cabbage, mashed potatoes and pumpernickel bread. Cathy provided a "Good Luck Tom" cake for dessert and presented me with a card and some departing gifts. We then went bowling for a few games and had an overall enjoyable day.
Today, Tuesday, Dad and I will depart for Phoenix in about an hour. We plan to make it to the west side of St. Louis today and hope to be in Phoenix by Friday. I report to work on Monday the 25th, one day before my 48th Birthday.
So again to everyone who sent their prayers and blessings, please continue to do so and Thanks so much much for all the support!
God Bless all of you!

Tuesday, February 5, 2008

"Benign" is the word of the day!

Well, the results of last weeks biopsy were reviewed today with E.N.T. Dr. Matthew Straka and I'm happy to say that everything came back as benign!
There is still some swelling in the neck area which will require follow-ups, but all in all, I've been given a clean bill of health! Dr. Straka okayed me to return to Phoenix so that I may return to work, so now I just have one more appointment on the 14th of February with Dr. Sciccutella and
hope to be back to work before my 48th birthday which is February 26th!
Again, I must give a huge "Thank You" to everyone who has said prayers, sent prayer cards adding my name to prayer lists of the ill and just encouraged me along this journey. That has been a huge part of my success so far and hopefully will continue to be.
God Bless all of you!

Wednesday, January 23, 2008

Follow-up with the ENT

Today, I had my follow-up appointment with Ear, Nose & Throat Specialist Dr. Matthew Straka. Overall he was pleased with the findings of the PetScan and in concurrence with Dr. Baliban's findings. He was unable to justify grounds for a neck disection at this time, however, he does want to do a biopsy on the back tongue area just to prove the findings of the PetScan. Dr. Straka said the PetScan did indicate some activity near the trach and attributes that to both the trach itself and the effects of radiation but he just wants to be sure, and I want to be sure, so I gave him the green light to get it scheduled. Surgery is scheduled for sometime Tuesday, Jan 29th and it will be an outpatient procedure, performed at Sewickley Valley Hospital.
Immediately leaving Dr. Straka's office we proceeded to Heritage Valley Health Center for the necessary blood work, chest X-rays and EKG, so that I can have a dedicated CatScan on my neck area, now scheduled for 3:15 p.m. tomorrow the 24th of January. After that it will be the procedure on Tuesday and then we will have to wait, yet again, for the results from the pathologist on the biopsy. Stay tuned for further updates as warranted!
Thanks and God Bless!

Wednesday, January 16, 2008

The results are in!

Well, after going for my PetScan last Thursday, my follow-up to discuss the results with Oncologist Dr. Baliban was today and I'd like to say that the PetScan showed no sign of cancer!!!!!
I still have another appointment with the ENT Dr. Straka set for next Wednesday. He will give his opinion on the PetScan results and decide if there is a need for surgery or not.
Based on what Dr. Baliban told me, I don't think there will be a need for surgery, but we'll wait and see!
Dr. Baliban said I was clear to return to work as far as he was concerned, but again we'll see what Dr. Straka says. I still have the trach and stomach tube and am only eating minimal amounts of food and liquids as swallowing is still somewhat difficult.
Dr. Straka should make a determination about the trach tube on Wednesday as to how much longer that will be needed and the stomach tubes removal will be based solely on me and how my food intake is proceeding.
So good news so far and it looks like everyone's prayers for me are paying off and I am more appreciative of that than any of you will ever know!
God Bless and watch for my next update in about a week!
Love to everyone,
Tom