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!

An early Christmas Gift!

Well, this past Friday I had my last Chemo treatment finishing my 12 weeks of Chemotheray and today I met with my Oncologist Dr. Kukunoor to review the results of my CatScans I had shortly after Thanksgiving.
Dr. Kukunoor read through the report rather quickly and many of the terms I could not comprehend but the bottom line is that it was an overall good report. Dr. Kukunoor said the the scan of my neck area showed enlargement of the lymph system and when I asked him if that was good, Dr. Kukunoor responded with, "That is terrific!" The scan of my chest and abdomen showed no new areas of cancerous tissue and the tumor in my right axillary has responded to the chemotherapy and shrunk to the point that Dr. Kukunoor now wants to radiate the area to remove any microscopic cells that may be lingering about. Neither the CatScan nor PetScan can pick up these micrscopic cells if they are there. The radiation treatment will consist of 30 daily treatments that shoukld last no longer than 5 minutes, far less than the 35 treatments I went through last year that lasted anywhere from 15 to 20 minutes. I asked Dr. Kukunoor about side affects of radiation and he said that because of the proximity of the area to be radiated side affects should be few if any at all, again unlike my neck area which was packed with many vital tissues from the esphoagus and windpipe to salivary glands and the voicebox.
Dr. Kukunoor said he wants to wait about three weeks before the treatments begin so that puts me at about mid-January. In the meantime I have an appointment on Dec. 30th to meet with a radiation oncologist and also a dermatologist to examine side affects I am currently suffering from the 5FU and Urbatux drugs that I have been receiving. Overall though, Dr. Kukunoor said I was doing extremly well and he said he will see me again in two months. I did at the end ask Dr. Kukunoor if I would be able to indulge myself into an alcoholic cocktail every now and then and he gave me the green light, so at least the Holidays will be filled with more than one kind of Spirit!
I wish you all a very Merry Christmas and the Happiest of New Year's filled with Love, Joy and most of all Good Health! Thanks for your continued prayers and as always I sincerely appreciate each and everyone of you!
May God Bless each of you!
Tom