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
Tuesday, July 14, 2009
Friday, June 26, 2009
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.
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.
Sunday, June 14, 2009
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!
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!
Sunday, June 7, 2009
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.
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.
Tuesday, May 19, 2009
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
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
Wednesday, May 13, 2009
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
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
Monday, May 11, 2009
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.
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.
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