Well, this past Monday I went for my quarterly PetScan, and all went well as this is usually a routine procedure. My blood sugar tested normal, it has to be in order for the injection they give you to do it's job and I was there for about an hour and a hlf.
On Friday, I had a follow-up to the PetScan with my Arizona Oncologist Dr. Kukunoor. Dr. Kukunoor said that the PetScan was an overall good report with no signs of any activity in the neck and throat area, however there was concern over an area of illumination in my right armpit area. This was seen in the last PetScan but was deemed insignificant at that time, due to its minimal size. The most recent PetScan now showed this illumination to have more than doubled in size and also changed its shape which concerned Dr. Kukunoor. A physical examination of the area also revealed a firmness in the tissue that was not consistent with that on my left side. Dr. Kukunoor told me that the illumination is measured by what he called an SUV (I can't remember what it stands for) but that it went from a 2.9 reading to a now current 7.0. Dr. Kukunoor said he wanted to have the tissue biopsied to determine for sure what it is. He set me up with a surgeon, Dr. Francisco Rodriguez, with whom I will meet this coming Thursday Sept 4th for a consultation to explain my options and answer any questions I might have. Then a date will be set for the biopsy. Dr. Kukunoor, as is his usual protocol, wants this done very quickly, and he set up a tentative follow-up appointment to see me on September 29, which could get moved up depending on the test results from the pathologist on the biopsy. Be sure and stay tuned!
I also discussed with Dr. Kukunoor my recent degradation in my ability to swallow, both solids and liquids. Over the past month to a month and a half I have had a steady decline in the ease in which I am able to swallow with most food getting caught at the top of my esophagus and my having to cough it back up in order to get it down. I knew it was a problem last month when I was back home and my Dad, a notorious slow eater was finishing his meals before me! That was telltale sign for sure! Dr. Kukunoor said the swelling could be occuring due to the radiation, to which I was somewhat puzzeled, being that radiation eneded over eight months ago. Dr. Kukunoor assured me this was not unusual, and he again placed an order for me to see a gastroenterologist, so that I can have my esophagus examined to determine if in fact it is closing up. If that is the case then a procedure that Dr. Straka had talked to me about months ago would probably take place. This would involve the insertion of an expandable donut being inserted into the esophagus and expanding the donut to stretch out the scar tissue to open up the passageway. I will probably be contacted early next week by the Gastroenterologist to schedule an appointment.
So things are still not all settled and the upcoming weeks should be interesting to say the least. I will contiue to post updates as I receive results.
Saturday, August 30, 2008
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.
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!
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!
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