Some Improvement...

Ted invited me to join him at game #2 of the LDS against the Rockies and while the Fightin's couldn't pull it out, it was a great day nontheless. In my last post, I mentioned my right ear was filled with fluid and I couldn't hear much from that ear. I was all set to have a tube put in on Monday, 11/2 but about a week ago, I slowly started to re-gain my hearing! It apparently drained on its own and now I don't have to deal with the "minor surgery". I still have "ringing" in both ears and while my hearing certainly isn't 100%, it is so nice to be able to hear out of both ears again.

My throat still remains sore and dry. The dry mouth is probably the most difficult thing to deal with along with not having 100% of my sense of taste. Unfortunately for these reasons, I just don't have a desire to eat and really have to force myself to do it. Still pretty much doing the egg omelete in the morning but have been trying as much "new" stuff as I can for lunch and dinner. I have been eating better but I still suppliment with 2 cans of Ensure per day to sustain my weight. My energy level has gotten better and I have been working longer hours on days when I can.

My voice has gotten better and I don't think it will be too much longer before I ask to go back on the air at the Hawk on Sundays. Of course that is if Bill will give me my job back. I actually asked him to assist me at a wedding that I booked about a year ago for this Saturday night, so I'll have to ask him.

With regards to my "displeasure" with Nurse Ratchet, I sent a letter off to Dr. Agarwala and informed him of my feelings about her. The result is that I will now see Rose (Dr. Agarwala's clinical trial nurse), who I thought was great as well as the doctor himself.

That's about it, as of now I have my second PET/CT scan scheduled for 11/30 but it may be moved back a couple of weeks. I'll be sure to let you know the results which I am confident will be good.

GO PHILS

PET/CT Scan

First let me say that the results are as good as can be expected but unfortunately, the way we ultimately got this news, had me on an "emotional roller coaster"! Going back to May there was a lot of information I had to deal with. Part of that information was about the PET/CT scan that I would get about 10 weeks out of radiation treatments. I vaguely recall them saying something about the first scan would not be "normal" and would become the "baseline" to compare future scans to. Due to how long ago this was discussed, it was not at the top of my brain. The scan was done on Monday 9/28 at St. Luke's North and happened to be the same day as Brad "C's" PET scan so I got to chat with him a bit after my scan and just before his.

I also want to preface that my EN&T Doctor Yen ordered the scan and I had expected to see him on the following Thursday 10/1 to have the results reviewed with me in his office. However, I also had an appointment scheduled with my Oncologist, Dr. Agarwala on Tuesday (day after the scan and two days before Dr. Yen's appt.). I have not been real thrilled with Dr. Agarwala's nurse practitioner Rita since I've been going to him for the past 6 months and had a bad feeling about having her review the PET/CT scan with me.

After she reviewed my chart with me and gave me my typical exam, she sat me down and said "now let's have a look at your PET/CT scan report. With that ever familiar "scowled" look on her face and a few shakes of her head as if to say "don't look good", she began to literally read verbatim what was on the report and left no room for a medical interpretation. For instance, something about "there is activity along the posterior of the tongue and base of the tongue and to a lesser extent the tonsilar regions, right greater than left...this could be due to a combination of physiologic activity or residual malignancy". There was also something she read about "new left cervical nodal activity on the left side of the neck".

Dana looked at me as Nurse Ratchet continued to read this information and new I had lost it...shredded to pieces...had my hole dug 6' already and finally asked Nurse Ratchet to go get Dr. Agarwala. He came into the room and obviously saw I was distraught and immediately said that this report, while not normal per say, he was NOT overly concerned with the results. He said that his recommendation would be to do another PET/CT scan in 8 weeks and to see if Dr. Yen agrees after he has had a chance to examine me. I would have obviously preferred to have Dr. Agarwala review the report and not his nurse practitioner but even more so, would have much rather had gone to Dr. Yen first to get the news. The news as presented by Nurse Ratchet, had already done too much damage for me to feel warm and fuzzy after Dr. Agarwala's take so I was a basket case until my appointment with Dr. Yen on 10/1.

Dr. Yen is the man...Very highly respected Dr. in his field and many would say the best in the entire Lehigh Valley area. He is a straight shooter but has compassion for his patients. When we entered his exam room this past Thursday, he commented on how much better I looked and was talking as he pulled the report up on his computer. The next words I heard him say under his breath was good...good...good as he read through the report. He then said that "he couldn't have asked for a better report". He then went on to explain what was actually written in the report but then immediately explained why they wrote what they wrote and what that actually means. Yen continued explaining that when you are just 10 weeks out of radiation treatment, you are still in major healing mode and more times than not, it is the fact that you've literally been fried that is causing these areas to "light up" on the scans.

He gave me a very thorough exam and when he felt my neck, his words were "it's hard to believe". Meaning that just 3-4 months ago, I had a lump the size of an egg on the right side of my neck...It is totally GONE! He also stuck a scope up my nose and scoped my throat and said other than still being "fried" down there, everything looks great and the fact that my neck felt great, he doesn't think at this point the neck dissection surgery once discussed as a distinct possibility, would be necessary. His final recommendation was to have another PET/CT scan in 10 more weeks to keep an eye on everything and hopefully show less activity or better yet NO activity, but warned that it still may be too soon to be healed enough to eliminate any of that "false" activity.

Needless to say, quite a bit different interpretation and translation by Dr. Yen than Nurse Ratchet so by Thursday night, my head was in a much better place and in 10 weeks, I will be sure to schedule my first appointment with Dr. Yen and let him give me the news!

Otherwise, I still have fluid in my right middle ear which prevents me from hearing out of that ear and Dr. Yen will plan on shooting my ear up with Novocaine in 3 weeks and will put a tube in it to drain the fluid and give me my hearing back :-) I also have ringing in both ears, I have no working salivary glands at this point and not sure I ever will again but that makes for a VERY dry mouth! Sleeping is a challenge when your mouth is as dry as a desert. I also developed Neurapathy about a month ago which is a result of the chemo which causes my feet to tingle and get numb, my throat is still very sore however, I am finding more and more things to get down like: Pottsy's hot dogs, I did finally have a few BK Whopper Jr's at this point, BK Big Fish sandwich's, Omelets with mushrooms, peppers, onions, cheese and ham. Still not able to get enough calories down my throat to sustain my weight, so I am still supplementing with Ensure through the feeding tube. That's another drag...it's actually starting to get sore and is a bit bothersome. But other than that...I feel great.

I've been going into work around 9am and coming home around 2pm. Initially dad was driving me while I was on pain meds, but for the past 2 weeks since I'm off ALL pain meds, been driving myself again. I still don't have all my energy so by 3pm, I take a nap for an hour and then I'm good to watch the Phil's.

I really didn't know what to expect after treatment, but I can honestly say that I DIDN'T think I would be where I'm at now. It is extremely frustrating to deal with all of the side effects and while some will go away, others may improve, I just want to get back to some semblance of normalcy. Hopefully that day will come sooner than later.