Friday, July 30, 2010

The Process of Recovery Continues:)

Not a lot to report this week-rather uneventful as a matter of fact. As you can see by the pics, I did get to attend my first real function in the Annual American Heart Associations Black Tie & Blue Jeans I've been involved with for so long. Actually had my first adult beverage in a couple of nice cold barley pops! Couldn't finish the second one I admit but again, it's a start. We had a blast although Kieth and Lisa might have gone a bit overboard on the silent auction items. I was able to actually go fairly strong the entire evening, voice and all although pretty wiped out Sunday but again, this was my first full night at a big function of any kind so I am pleased.

Beyond that, I don't need to bore you with what I'm eating and tasting and such as Ive gone on in detail of late but suffice it to say, improvement continues on all those fronts and that a damn good thing in my opinion. I have been guilty of getting a bit ahead of myself but the body very good at shutting you down. There is a swell in town so might have to test the waters so to speak and see about getting a little surf session in. We'll see if an how that goes. I did after all forgo the Kauai Chanel race going on this very minute but I know I would be a liability even though I feel I'm getting stronger every day, it's honking out there today. I can't help thinking how the boats must just be screaming right about now-safe travels guys and don't break too much-Lahaina is on the horizon!

Have a great weekend everyone and again-thank you for your wishes and thoughts

Friday, July 23, 2010

Thirst and Insomnia

My complaints of the week is I can't get rid of either-OK-that's it!

Well it is as far as my complaining-the dry throat is never ending and that part of the salivary issues I'm sure so one can only hope it will improve however, no guarantees on that. As a matter of fact, this week I seem to either be more cognisant of it or it is in fact getting worse. Maybe as I'm getting more active, it becomes more apparent and I can never get enough water-question for the Doc next week. As far the insomnia, I have no idea except it's frustrating tossing and turning every night as that is just not an ailment I have regularly-Mom and Pam yes, but never me and certainly never an issue during the treatment until now. The general assumption is a side effect of coming off the meds but seems to be going on for quite some time. Oh again my mantra of "day by day!"

Outside of that, don't notice any significant changes or any events worth reporting-I did have my monthly follow up with the Radiologist but that was essentially worthless. He continues to be a man of few words as Lisa says and proved that again. Some poking and prodding just to infuse some extra pain in the area, a few brief comments on how well I seem to be coming along and make an appointment with the nurse for 3 months. What, that's it? Can you tell me anything specific and why so long. He actually told me he had nothing further to contribute to my treatment and teh Oncologist and ENT Docs would be more proactive -Ya Think! Really has been the weak link of the team and his zapper techs did the hands on work so no real surprise there. I did have a moment however when walking through Queen's to the appointment as the brain does odd things. I came around the corner and it was like my brain saw the entrance and just went haywire. What are we doing here, your not going in there.....just a very creepy, helpless feeling came over me if you will. It was odd.

From my personal perspective, I notice a little more hair (except that last two inches in back that were abused by the radiation beams and still not growing), a little more improvement in taste and foods I can ingest although still no sweet sensation, finally working out to try find some strength and as much as I'm kind of digging being down at this weight, I assume some going to come back as I add back some much needed muscle mass as right now, still feel very weak-that is the tough one as I think I can do certain things with weight, water or whatever but the truth is I really can't so need to be careful - actually did not surf at all in this last little swell nor racing just yet but keep telling myself baby steps and every day gets a little better, stronger and faster.... Grrrr! Not real good at that but I know, patience right?

Oh-I did attempt a few sips of wine as my buddy Bill has restocked his wine cellar and decided to do a lttle tasting-OOUCH! That was premature as can we all say THAT STINGS! Maybe we can venture into a barely pop or something at Black Tie and Blue Jeans this weekend but again d-b-d!

Have a great weekend yourself

Jeff out.

Wednesday, July 21, 2010

Recognition...or lack thereof

Just a quick midweek observation here as it continues to amaze me how many people I run across on what now seems to be almost a daily basis that haven't a clue who I am! I guess the lack of hair and 40 pounds makes quite a difference! LOL

People I know professionally, socially, even personally for doesn't seem to matter. I can be walking down the street and pass someone I've known for years, sit across from someone at a poker game I've played hours on hours against, stand in the kitchen of a friends house and see someone I see around town at social functions, or in that very kitchen on a regular basis, even Outrigger members around the club that I've grown up with and they simply have no idea it is me. There is usually a hint of recognition or an "Oh my God..Jeff?" when I talk but it is just too funny. Hell, Mark Elwell even admits he might have blown right by me recently had I not been sitting with Lisa and Mom and he was coming specifically to meet me! Hey-it's kind of fun as makes it easy to go incognito when needed and not feel rude. When the throat is acting up, believe me that is a good thing.

Friday, July 16, 2010

One Month Out!

We are now officially one month out of treatment. No significant changes from last week per se however I was able to successfully get off the Fentanyl without assistance! Didn't want to wait to see my Doc and get yet another script for a lower dose, blah, blah , blah. therefore, last week when I replaced my patch after 3 days as instructed, I noticed there was still visible medication in the old patch. therefore, I got the bright idea that instead of changing out after another 3 days I would simply leave the patch in place and let the dose reduce itself that way. It seemed to work as I woke up Monday morning and and the patch had fallen off but I felt fine with no sign of withdrawal and that was after 7 days. I actually feel much better too as I notice I am not dragging as much as prior and seem to have more energy. I have had some trouble sleeping and that may be an effect but that too seems to be passing.

This week also brought my first follow up doctors appointment and I was looking forward to speaking with my oncologist yesterday. Although my self prescribed way of weening myself off the Fentanyl seems to have worked, I was looking forward to a professional update on how the rest of me really looks. He did laugh at my creative thought process in medicine and just had to shrug it off saying certainly not the normal procedure but so long as I didn't have any withdrawal reaction and not in pain, what the hell! Beyond that, he was quite pleased with what he saw. Outside of still being slightly anemic, and that certainly explains my fatigue, all my blood work looks great with significant improvements across the board since the last test. Further he can see no remnants of the tumor HOWEVER, he was quick to remind me that is just a visual observation and needs to be confirmed when we do the PET scans again in September. Also, he never saw the monster in the beginning as we brought him in late if you recall so when he did take my case, the chemo had reduced the size so dramatically, he needed my scans to locate it to begin with but even that is no longer visible. Outside of that, I need to drink more fluids as getting dizzy when I stand up too quickly and maybe put on a few pounds. This is not a race, but a slow process as he said but I seem to be coming along nicely.


I of course have a different opinion and limited patience. I am eating like a horse-but want the full use of my taste buds back. Got back into the gym and the water for a few light workouts this week-but want my strength back. Pulled another pretty productive week at work-but want to be all caught up.......NOW!

Patience is a virtue and I have to remember to take it day by day.

Thanks for your continued support and thoughts and hope you have a great weekend

Friday, July 9, 2010

3 week status

It is now 3 weeks since completion of the treatments and I'm getting a lot of general status questions on my health in general so lets just go through the basics here.

As I've mentioned before, I seem to be making daily progress in most areas and have actually felt the best I have in a few months here the last couple days. Being able to consume food again probably a great part of this as can get the needed nutrition to help the body heal. Rather funny as with all the problems I had eating, these last few days I've been eating like a horse. No big bbq meats or things like that yet mind you but softer type foods like pasta and yogurt. Want to be careful as need to start back into a regular type workout schedule simultaneously as don't want the weight back so long as it's gone. The taste buds are slowly coming back as well and I seem to be able to register a bit more flavor. Sweetness must be the last as still no recognition there so some foods are quite odd. The pain level of the throat is improving dramatically although too much talking at once still aggravates it quite a bit. I am now trying to self wein myself off the Fentanyl now that I have been informed of all the dangers there. Nice of my Doctors to mention nothing and I find out about all these potentially deadly side effects and withdrawal symtoms that can occur from friends of mine in the medical profession. I'm down to the 50 mcg/hr patches and as I can't reduce to the 25's for another week, I'm keeping them on longer as they reduce in potency-maybe I can just skip the 25's but make that decision next week with the Doctor. Finally, my salivary glands seem to be in decent shape although still a little thick. That maybe a permanent issue but at least better than before and hopefully not completed the healing cycle there.

Hair-Hmmmm. No more Uncle Fester as it is filling in. Its coming back in very curly and with a lot of grey but we'll see. It is also about 2 inches shy in the back that will be interesting as it grows. The reasoning there is that the upper neck, lower scalp area of course was subject to direct radiation and therefore that hair slower to come back-if at all I understand and that could create a whole new hairstyle but again-we are only at 3 weeks so time will tell. Same holds true completely for facial hair. Actually am using a razor for the first time in a few months but that is only on the spots that are starting to show signs of life. Certainly no goatee for a while....again, if at all

Prognosis is of course the BIG question everyone asks (as do I)and am I cured? Truth be told is I haven't a clue. Certainly hope so but I haven't even seen a Doctor in almost a month. I have 2 follow up appointments next week so am anxious for that and of course the real story won't be known until September when we can scan and truly see if the job was done. Keep the good thoughts coming please!!!!!

Monday, July 5, 2010

4th of July!

Well the good news is I was able to enjoy the entire weekend without incident!!!! Bad news, I might have gotten a bit overzealous as here I sit Monday night wiped out. One thing that certainly going to take some work is getting my strength and endurance back. Nutrition is key onb that and my ability to eat is improving daily however trying to take it slow to avoid another incident such as last week but hope to soon start back into a regular workout to start getting some strenght back as this weekend sure proved I need it! Further this weekend is the fact that Ive gone 3 full days without a nap and that hasn't happend in months so I definitely overdid myself but had a blast.

On the 4th I was able to participate and get myself down to the Club and enjoy all the festivities and that says a lot. the day was inclusive of walking down to Waikiki and grabbing breakfast at one of Lisa's favorite places where I had what she tells me were delicious banana pancakes, but I still can't tell but they are soft! From there we stroll down the beach to the canoe races, our annual MacFarlane Day surf regatta, hang out at Dukes for a bit until I talk myself out and then head back to the club. From there we grab Lisa's stand up board and tandem out to the annual flotilla where I subject the new surfer girl to a few incidents on that journey, my fault as take us right through the wrong place in a surf break and get cleaned out-oh well, only lost the camera but havoc nonetheless. We make it out to the madnessand hang out with some friends on his 36' Fountain, "Moisture Missle" and take in the sights before we opt to hitch a ride back to the outside of the club to reduce our paddle where we then join the post race party kicking into gear for the fireworks and BBQ! I fired up Lisa's Ahi but obviously not in steak mode myself so go with a baked potato and beans that were actually tough to get down-probably as I've overdone it talking and am hurting a bit.

And I wonder why I'm tired.

That was on top of a full day at the beach Saturday and although I did not nap today, I did lay low(er)-I caught the finish of the sailboat race from the beach as odd as it is to see from that angle and was going to head down and visit with the Prima crew but looked like they went to the Yacht Club immediately for the award party and that would have been over the top-the voice has had enough this weekend so just couldn't do it and headed home for the duration-sorry guys.
Anyway off to bed as I now I need the sleep-hope you all had a great Holiday weekend weekend as well!