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Friday, December 31, 2010

Good Riddance and Happy New Year


As the sun sets one last time on 2010 I sit here on the beach at the Outrigger and say good riddance! I am not sad in the slightest to watch this sunset and have 2010 fade to black-Don't let the door hit you in the ass on the way out. There are still many challenges ahead both while we continue to await an all clear medically as well as what is sure to be a long road in rebuilding life and business but hey-I'm here to do it-Off to some festivities at home to ring in 2011-


Happy New Year everyone!

Monday, December 20, 2010

Happy Holidays!

Wow, hard to believe there are only 5 days left until Christmas. That is to say nothing of how remiss I have been in not posting here in almost 2 months. There was a lot of work and valuable exchanges created here and I again thank anyone still out there for following and sending your wishes. Ironically the reason I jumped back on today is over the past week I have had two conversations with people who have family in similar situations to where I was back in the early part of the year. One has already forwarded this blog, as I have found have quite a few others of you, and the other I just told of this option and offered she too send off and she thinks it is a great idea. After all I have gone through this year, and I believe I've said this previously, if my experiences dealing with this demon can help them and offer some insight of where that train might be laying in wait and diffuse the fears they have even slightly, I am honored to help.

In my specific case, I guess I haven't posted much as really nothing new to report and believe me-that is a good thing. Although I am still under regular Doctors care, was able to sneak off and do Thanksgiving cruise in this year with Lisa, Mom and Pam. Even got to catch a Dolphin game as well. Certainly not in the budget but a well needed escape for all of us. Unfortunately, we were not able to see my cousin Cathy whom I've mentioned here previously as she did loose her battle before we got there. Very sad but she had had a very long fight and we miss her.

The Doctors are keeping a regular, close eye on me as I mentioned and although I am free to do whatever my body is capable of, between the three of them they are trying to ensure I have at least monthly check ups as my chemistry still not right, nor is the healing process near complete. Both of those have been cause for problems here and there as I "learn" my capabilities and they all are quick to remind me that although things do look great, I am actually ahead of the curve as they had said a year of recovery. I find myself a but anxious here as had to cancel last weeks appointment as the Doc had a family emergency so lacking any December insight-never a good thing I admit.

Outside of that, I find myself back to the daily grind and concerns you all have in life. Much of that I try look at in a more enlightened fashion and focus on what one can control but I already see how some of the curve balls life loves to throw at you that stress you out can come back. My goal is to alleviate those such things but it does take work and I continue with my mantra of day by day.

I will say that I wont be sorry when 11 more of those days have passed as I am certainly ready for 2010 to be in the rear view mirror.

Have a fabulous rest of your Holiday Season everyone and I'll be back here in '11-Need to figure out what to do with all this content-LOL

Friday, October 22, 2010

"COMPLETE REMISSION!"

And that is a quote from the Oncologist!

I must admit I was actually a bit underwhelmed yesterday, almost disappointed, as I had myself worked up and believing I might actually be told the words "cancer free" but after letting it sink in overnight I'm now euphoric!

All things considered this is obviously great news and another giant leap towards that ultimate goal. As he said, it is simply too early and would be naive to declare that complete victory at this point. I'm barely four months out of treatment and am already doing things they had warned could be six month's to a year-if ever so guess I can't complain. Granted I still have issues of course but still way ahead of the curve. Further, although everything "appears" to be back to normal and gave the go ahead on the remission declaration, I am still in need of continued, regular and diligent monitoring. My blood work is still not normal, nothing concerning mind you and continues to improve, however not something we can walk away from at this point so he has ordered 60 day check ups on my CBC's. Also, and the ENT mentioned this as well, is I still have significant radiation damage that needs to monitored as well just to ensure no bad guys hiding in any of those blind spots-again nothing to be concerned with but common sense and prudence require attention. Maybe, just maybe, once we go through 2 or 3 more of these cycles and possibly another CT if they deem necessary, we may get that declaration,but in the mean time, remission is nothing to be ashamed of!

With that, it is time to finalize plans for the Hallowed functions that grace our Island Paradise beginning tonight for some 2500 at Aloha Tower. I had this great idea that since we are joining my buddy in his green limousine with the "Kermit" vanity plates, it seemed only proper to dress as....Kermit. Problem I have was when I went to get said costume, the events that have transpired this year have prevented me from the plan. I realized yesterday that a costume that requires a mask....HELL NO. The feeling and memories that went through my head when I put that frog mask on were quite disturbing so there is no way that is going to happen. I had actually kept my radiation mask from the treatment itself in the thoughts of Halloween but it was just too freaky and it landed in the trash last month so I guess I shouldn't be surprised. With that, I need to go finalize my thoughts on an alternative disguise for the evening.

Have a great weekend everyone and I'll be posting something next week after this all settles in a little more and determine where I'm going with this blog from here-10 months of work and cant see just walking away but then again, I hopefully have little else to update.

Again, next weeks discussion!

Aloha

Friday, October 15, 2010

2 DOWN!

I figured today would be rather uneventful as the radiologist isn't much for words but he did concur thank god so that's two! Actually he simply looked at the report and the imaging techs notes indicating no detectable problems, asked me what the ENT had said and agreed saying her diagnosis is the most important anyway. He poked a proded a bit, said he was very pleased with my progress and because I have so many other doctors on the case and he has nothing to add, he'd see me in 6 months. Oh and go see the dentist again. Great another appointment but he's right-need to see what damage was done on that front.

Next up however.....oncology follow up next week and that will be all about the chemistry! And then..........PLEASE PLEASE!

Tuesday, October 12, 2010

1 Down....2 To Go!

Haven't had the need to update mid week but today is worth a post.

Just finished my appointment with the ENT and it was my first review of the scans and x-rays we did a few weeks back. Needless to say, I've been anxious but I knew she was to be the first of the three doctors to review and talk with me as she spearheading this and I was informed she was going to be out of town at a conference.....so wait we did. Outside of the scare on the reschedule from the radiologist office, I took the fact no one called me in the interim to be a good sign. That said, when she walks in the exam room and asks how I am, I look up from my magazine and sheepishly say "nervous." She now looks concerned and asks why and if I see or feel anything.

HELLO? "No but you are about to tell me what my scans look like right????"

Oops! Guess she forgot about that little appointment she made for me-LOL Hadn't even looked apparently as just getting back into town and trying to catch up. Again, an example of how slammed they are as us lone patients who only have ourselves to worry counting on the docs who simply have too many patients and guess we all start to blend together. Maybe a morning review would be helpful.

Unlike my other experience with a previous doctor you may recall I no longer speak too, in her defense, I know she truly is slammed trying to play catch up after being gone and was actually quite embarrassed, very apologetic and understanding as she quickly pulled up the summary on her computer and tells me that all looks good and then excuses herself to go be a Doctor and actually review for herself. After about 10 minutes she comes back in all smiles. extends her hand and says "Congratulations. They are perfect. No sign at all of the previous tumor or irregularities!"

Irregularities? is that what they are-LOL.

We chat about what to expect next as far as additional scans such as a PET and she says nothing and schedules a simple follow up in December. We go on and just talk story for a while to clear the tension that is leaving my body at this news. She asking me if my hair was this curly and grey prior (uh NOT!) and how odd it is so many of her patients do come back curly. She also again going into the whole "type A personality executives such as you who's entire perception on business and life in general changes during this experience and many wonder why they allowed all the stress prior" and how she hopes I'll be one in that camp as certainly a part of the cause.....I've always laughed at her type A reference to me but can't knock her comment on the perception as I have mentioned countless times how mine certainly has changed and I look at things much differently. Priorities! She even touched on how she not a patient but has changed her priorities and cut back due to what she sees every day. Apparently she has cut back and sees just enough patients to take care of their needs and get by so she can enjoy her life as well. Um just get by? Wow-I get her invoices...we certainly have a different perception of getting by! LOL The lady has been great though so hats off to her perceptions and the invoices been worth every dime as well!

All in all, she has been correct all along this process and is very pleased and happy, however this is not a hall pass and release just yet as we need confirmation from the radiology and oncology departments. Although she has all but closed my file for two months we still have to get through two more doctors who need to concur on this assessment as well as the associated blood work and specific tests that they will need to examine. Then and only then can we say this is over and hopefully "cancer free." For today though, a big relief as this first one, this first hurdle, this was HUGE any way I look at it

Back Friday after appointment number 2 with the radiologist and hoping to be able to report same!

Right now-I'm heading out to Prima for a sunset sail and a beer!

Thursday, October 7, 2010

Patterns and Correlations

Another week of no doctors appointments or issues per se,therefore a relatively uneventful week and not a lot to report so again, as I said last post-I'll take it!

I am noticing more and more what I can and cannot, or should not, do and all part of the learning curve. I say there were no issues, although that is not entirely true because the problems I did incur this week swallowing and the associated pain were quite possibly completely self inflicted. I say that as there are clear patterns developing as to when these types of issues arise and as much as I hate to admit it, there is a direct correlation to the type and/or amount of consumption I may find myself partaking in. More and more, I have a pretty good idea of the foods I am able to eat and those that may not be so good.

As an example, an aioli that came with some calamari Friday night and I noticed some spice on the very first bite. The fact I continued to dip into this sauce and found myself almost crying a half hour later.....ummm, whose fault was that? Obviously spice is still a big issue, better, but an issue none the less and if I push as I did here, I feel it. Other foods all seem to be OK in moderation and with enough water have even been able to do things like chips and had some popcorn at the movies for the first time. Moderation is the word though as too many of them, regardless of how much water and it will scratch.

Another pattern forming here with adult beverages...well let's say I have to admit my previous find of Kettle on the rocks seemed like a great idea at the time, no acidity, no carbonation and a slight anesthetic quality, however, I have been altering my opinion as I am noticing that while drinking it, all was good, but problems were inevitable the following day. As I am now able to enjoy certain wines without the acidic sting that was so bad before, and assuming I stick with them without any additional refreshments such as presented themselves Friday, these issues aren't necessarily there the following morning so long as don't go overboard on the quantity. Then of course we seem to develop throat issues as well as all the other ailments associated with your standard hangover-never a fun combo I can tell you. Again patterns are a forming.

Further, as I am learning and trying to be more cognisant of the acid/alkaline balance, I certainly see the rationale to the argument of why some only consume beer and wine and steer clear of spirits as the acidity values differ so dramatically. Here, although we may not completely subscribe to the plan, the theory is sound and monitoring the balance certainly can't hurt.

Finally, hair..........coming back in s l o w l y, curly and gray

All in all however, I'd say we obviously continue to improve as none of these items could have been consumed in any fashion not so long ago. Well that is my input for the week as the anxiety builds with not one but two appointments next week to review those initial scans. the 3rd Doctor will chime in the following week and from there we will proceed to whatever is next on the agenda. Crossing those fingers!!!!

Friday, October 1, 2010

October!

October is upon us and that means 15 weeks have now passed since I completed my treatment and I continue to feel better and better. It also means I only have a week and a half left until I am to find out the results of those initial scans taken last week. There was one brief incident earlier this week that put quite the scare into me for a moment as I received a call from the radiologist office informing me I needed to call back as soon as possible as they need to change my appointment. HELLO! WHAT'S WRONG??? That was quite a nerve wracking message and call as of course I assume by now he has seen my scans and something must have gotten his attention and concern if he needs to see me. Fortunately it turned out to be a false alarm and they simply need to reschedule as he will be out of town the day of my appointment. Typical of course as the nurse had no forethought that she could be sending sheer panic through the brain of a patient-a simple clarification on the message would have gone a long way in NOT stressing me out for those brief few minutes.

Outside of that, a pretty mundane week to report with no appointments and better yet, no flare ups or irregularities. I'll take mundane thank you! I was also able to participate and complete my first Holo Holo race. 17 hours of racing around Oahu sure can take it's toll as I was exhausted and sore as hell come Monday but a beautiful sail, much of it under a Harvest moon is quite an experience. In hindsight we took the wrong route that cost us the race, but the fact of the matter I was able to do it works for me. Now off to catch part of this swell paying our Islands a visit!

Have a great weekend!

Friday, September 24, 2010

Let the scanning begin!

Yesterday was the first of what I assume is to be a series of scans and tests-HOPEFULLY this will prove to be my final series before I am released to a more manageable and tolerable annual type check up. i.e those precious words saying I have a clean bill of health and we are CURED! That is the terminology they say can actually be used for my type of cancer so the fingers are crossed amongs other things. Now of course is the anxiety of waiting. My next scheduled appointment is not until October 12th and of course the techs will never tell you anything on what they saw yesterday. We did a series of x-rays and CT's and a PET will be forthcoming but at least the process has begun and I fully expect a busy October up and around Queen's but if that's what it takes to be done with this, so be it.

As that all I have on the health front, I can report we were able to pull off a hell of a celebration last weekend - a combined birthday celebration for both Mom and myself and the fact that I could. I decided it was time to do one of my usual "BBQ" parties where I cook and have others bring the wine. As it was my first event of any kind to host this year it got a little out of hand numbers wise. Wow talk about being overwhelmed and at the outpur of support-thank you all. Not only did Tom McNamara, one of my best friends from college, come all the way from Denver-so did some 70 others. Never have I done one of my gig's for that many and quite honestly, I was a bit concerned but.......with putting Tom to work on his mini vacation as well as Lisa, Mom and Pam, the borrowing of a friend's grill for more cook space and the recruitment of random victims throughout the evening for thier kitchen and bar skills-we pulled it off. It was, even if I do say so myself-a great success. Thank you all for everthing!

(Complete pics available http://tinyurl.com/25g5sho)

Oh-thank you LC but yes, I was able to feed the troops shortly after 9 and with no blood, at least not mine! Smart ass!

I will admit however, I was completely wiped out after the weekend-between the party prep, party, a VIP pre opening dinner for the new Iron Chef Morimoto's opening here in town that Pam took us too and entertaining Tom-in the best of times I'd be wiped out so needless to say, when I dropped him at the airport the body went on shutdown and been resting ever since. Now I find myself prepping for this weekends event-Holo Holo-a nonstop overnight circumnavigation of Oahu and possibly the Blue Angeles Sunday-see how we feel. YIKES!

Sans the throat penalizing me for over usage or difficult foods, guess I'm feeling better huh so those scans better validate that!

All we have to report for now - have a great weekend

Friday, September 17, 2010

There is a light at the end of the tunnel

We hope! This will take some time but at least things are in motion. I met with Dr. Adachi on Tuesday and she has started to schedule my final series of scans starting next week. This will go on for the better part of a month but once they are all completed and we get all three Dr's to review the results, the hope is obviously to find we are cancer fee and put finally put this nightmare behind me! To say I am rather anxious is an understatement as you might well expect.

Outside of that, as far as her findings and update, it is again all positive from a visual standpoint. We discussed my recurring pain issues as well as the difficulty I have developed in swallowing occasionally, specifically when I first wake up. You may recall I use the term "seized up" previously and ironic as that is exactly what happens. She explained there are a set of upper muscles in the throat that start the whole complex swallowing process and the radiation damages them in treatment making them tight just like the jaw muscles. This causes them to literally seize up and prevent me from swallowing. That is why this issue happens more often when I first get up as the muscles tighten up throughout the night. She says there is no way to tell if this is temporary, permanent or possibly might even get worse. She has one patient who is seven years out of treatment and is just now developing this same problem-WONDERFUL!! The punches just keep on coming on what we didn't know right.

In regard to the irritation and pain I get with some food items, this is still part of the healing process and in her very matter of fact manner, tells me to figure out what aggravates my throat and "STOP IT!" Makes perfect sense right-LOL. She is not too pleased on drinking of any sort.- Her opinion, especially on my find and theory on Kettle on the rocks, is "it's poison and not worth it." She lightens her tone slightly on beer and wine in moderation but very clear that she is not a fan for her patients period. She herself admits to drinking wine nightly with her dinner but quick to point out she not a patient. I'll have to run my own personal experiment and pay closer attention to any correlation between vodka and throat issues the next day and determine if that a "stop it" substance. If so it also fails my other Dr's opinion on the matter that I have no restrictions and can eat and drink whatever I care to and the body will tell me if it is OK. That said, I seem to have isolated tomatoes and related product as a food that will fall into the immediate "stop it" category as have noticed I always seem to have problems with them. Bummer!

We also discussed the alkaline diet I was told about and the benefits there. She agrees that cancers prefer an acidic (i.e alcohol) environment and that having a diet heavier in alkaline foods can't hurt-she doesn't necessarily subscribe to the entire theory. More of the Eastern versus Western medical theories but she, like me at this point, prefer a balanced healthy diet and that is bound to include certain foods considered acidic.

Anyway-that about it for this week-I'll certainly update more next week after the first scans are completed although doubt I'll have any feedback-the tech's never say much but it is a start. Right now I'm off to Costco as need to prepare for a little celebratory gathering tomorrow-my birthday as well as Moms but considering the health, this will be quite a test-looking like more people than I've had before so crossing my fingers I can pull it off! Hell, I even have one of my best friends from college flying in for the festivities from Denver-Now that is cool!

Friday, September 10, 2010

Birthweek!

Well for that brief scary moment back in January it crosses your mind if your going to have another one. Brief mind you but scary as sh*t nonetheless when you first get this kind of news and try decipher what is happening. You know the tales since then and I am happy to report I just had another one on Tuesday!

Didn't do a lot on the that specific day, but had a great Labor Day weekend as celebration in Lahaina with Lisa and the Prima Donna crew as well as an upcoming gathering. The 7th was actually a going away party for a very good friend who took a contracting job and is heading overseas to Afghanistan for a year so we gave him priority for the evening. I actually blew up my throat pretty good that night as well and that shut me down on the spot. I'm sure it was nothing more than the body putting the brakes on for overuse as we had a combination of what for me was a very long weekend. We kicked off the Maui races with some carousing Friday night with Lisa and the crew, a race Saturday and post race pool festivities, and an 8 1/2 race home to Oahu on Monday. Combine that with some red pepper flakes that I apparently neglected to see in the tako poke I was eating at the farewell party and my throat pretty much instantaneously sent me home! I was still torched Wednesday and could barely speak but am rebounding much quicker and seemed to be much better yesterday.

Next on deck is I have an appointment with my ENT next week and there I hope to begin the process of scheduling and preparing for my final series of scans. I don't expect these to actually happen until October but I'm hoping we can at least begin the process. I also am looking forward to getting her opinion on my progress as well . These occasional shutdown that occur are still a bit concerning as to why and I have also noticed it is becoming regular in the morning regardless with the water out the nose trick now being common place when I first wake up. My jaw bone has also become quite sensitive as well. That might be from the deliberate stretching I am trying to do daily to help my ability to open my mouth wider. On my last visit she suggested I do that as my mouth is not opening as wide as it should be-a common occurrence she tells me and correctable over time with stretching but has that caused the tenderness-all part of the barrage of questions you have and hope you remember!
Back to Prima for some Friday night racing and the results from last weeks adventure-WooHoo

Have a great weekend yourself!

Friday, September 3, 2010

Lahaina Bound!






Exciting weekend lies ahead as we are in Maui for my first real yacht race since opening day way back in January with the Prima Donna crew! Excited as both Lisa and I love Maui and this is a very fun regatta with very serious racing, as well as some not so to make for a great all around Labor Day. Can't get her into the sailboat racing thing yet so she'll come play and wave at us as she flies home overhead. Prior to that however, we kick it off tonight in Lahaina town in what always seems to be a series of memorable events before heading out tomorrow for the Lahaina Inshore or what we choose to call the Lahaina Lights -a series of inshore buoy races off the Lahaina coast that is notorious for very light wind conditions. A few years back when I first raced here with Rick Osborne, these conditions led him to the idea that to counter the effect of the cold frosty beverages that the heat generated in this part of our Island chain requires, one might as well fire up the BBQ while racing and really enjoy the day. (attached photo) It has now turned into an almost fleet wide competition with numerous boats flying kites while trailing smoke-rather a funny sight. The key is to save enough to bring back for the judging during the post race poolside festivities! Sunday involves a Maui vs Oahu crew softball game and dinghy races at Lahaina Yacht Club although prudence says Lisa and I might very well forgo that continued debauchery. I may be getting back in the saddle per se but best to not overdo it and very well may find I am better off to relax and enjoy the newly remodeled Royal Lahaina Hotel my friend Tom Bell has set us up in and the Kaanapali shoreline while resting up for what culminates early Monday morning with the 67th Annual Lahaina - Honolulu return. A race from Honalua Bay across to Molokai where we choose to run the slot or a spinnaker run down the beautiful North Shore and surf on to Diamond Head. Looks like we could get as many as 40 boats participating this year and forecasting some good wind to bring us home so looking forward to a great weekend. Wish us luck!

As far as a status update for the week-fortunately, the razor blade issues I experienced Sunday have subsided so hoping that won't hinder any of the festivities. I do have another appointment with my ENT on the 14th and the continued irritation will certainly be on deck for discussion. The primary focus there of course will be to get the scans scheduled.
I find I am still getting a kick with the lack of recognition as it is still occurring even with the hair coming back in. Got a few sailing buddies last Friday after the races and a few paddlers last night as was down at the club with the SC contingent but quite possibly the best one yet happened last weekend. I was dealing a poker game at Lisa's when a longtime friend of hers, as well as a guy whom I have now know for a few years as well, came in and sat in seat 1-that is immediately to my left. I said hello, got him set up and actually dealt him 4 or 5 hands before he turns to Lisa and asks "So how's Jeff doing, feeling any better yet?" HELLO CAREY! You mean ME! LOL-really can be entertaining-can't wait to see who I get in Lahaina. There are sure to be a few.
Have a great Labor Day!

Wednesday, September 1, 2010

Michael Douglas on Letterman

A little different post here but I found this Letterman interview interesting. As I am 10 1/2 weeks out of radiation therapy and still dealing with my remaining difficulties, I watched the Late Show and Michael Douglas, water bottle in hand (the dry mouth hasn't even begun yet Mike!) discuss his first week of what sounds to be my exact regiment-8 weeks, i.e. 35 plus sessions, weekly chemo.....An odd feeling came over me hearing him describe the similarities in his experience of realizing something wrong, through diagnosis and into the treatment cycle (although he is not doing the inpatient chemo regiment I did) and from my viewpoint at this juncture you can't help but feel for him knowing what is forthcoming. I had the pleasure of being introduced to him and talking with him many times years ago and find myself wishing I still had his contact info to discuss this. That said, he has obviously been very well prepared and even as Letterman is trying to tell him he hasn't looked better he is quick to reply he is only one week into the treatment and the full effects are not nearly upon him. YA THINK! He is fully aware he is on his last week of his junket for the new Wall Street movie and not going to be able to do the European portion at all as his throat deteriorates from the radiation. Interesting to hear he too has gotten the oh so familiar spot on warning I got about the 2 weeks of treatment before hell hits and I am so glad I'm on this side of the treatment while reliving this even know still dealing with my own remnants. I did find it interesting that his PR people had him completely dodge and redirect a question at his chain smoking where he said "no, this cancer is caused by drinking and yes I drink." Umm no, it is not necessarily caused by drinking although there can certainly be a case made that links it but there most definitely is a proven correlation to smoking-interesting redirect

http://www.nytimes.com/2010/09/02/movies/02arts-MICHAELDOUGL_BRF.html

Sunday, August 29, 2010

RAZOR BLADES!

Quick post here-No idea why but eating has taken a nasty turn for the worse today. Had a real difficult time with brunch today-nothing more than a nice omelet with soft ingredients and my throat was on fire. Now dinner-WOW-WTF is going on as this is even worse. Nice soft poached Opakapaka but I feel like I am swallowing razor blades-I am this close to hitting up that bottle of liquid Vicodin I still have....I so don't want to get back into that vicous cycle but man this is bad. NOT HAPPY!

Friday, August 27, 2010

10 Weeks

We are at the 10 week mark here and actually had 2 minor scares this week to deal with that got the WTF meter going for a bit. I had an very odd episode last weekend where I woke up and found I was completely unable to swallow. Literally took a sip of water and found it immediately exiting my nose! YIKES! That certainly generated some concern but it soon passed and I was back to as normal as can be these days as there are always challenges swallowing but that was a bit much. Fortunately that episode has not occured since yet I primarily notice I still have throat pain about half way through a meal-regardless of the meal. Simply not up to full usage yet apparently.

The second thing that got me this week was an early morning call from the oncologist office informing me I need to come back in ASAP for "further blood work and tests" EXCUSE ME? WHY? I was there last week and not due till next month-what is wrong. As is standard it seems, the only thing the nurse can tell you is that the Doctor has requested this....i.e it stresses the sh*t out of you! So far all I have been able to confirm after I went in is that the vampires claim to be at fault as they apparently did not take sufficient blood from me last week to run the full chemistry of tests he needs. That allowed me to relax somewhat however, that means I actually did not get all the results yet either. Good news is the tests would be complete and reviewed by now and there have had no further calls to stress me out so keeping the positive attitude! Even made it to my buddy Bill's little French soiree Wednesday evening to de-stress from that scare and was able to find a few wines this time that the throat could handle. I'd like to officially blame him for facilitating the first hangover I've had in probably six months-Thanks Bill!

On a completely different tangent here, I received the nicest e-mail this week regarding this blog that got me thinking. I have been continually and pleasantly surprised over the months as to some of the feedback I get, not only for the comments themselves, but in who authored it as it is my measurement of how many of you actually read this. Outside of those registered, I have no other way of knowing where this has gone or who reads it when but I thank you for your support! Some of the commentary you send me is great and in return I am thrilled to hear how this is of benefit to you all as well. Not only has this and Facebook been a huge asset to me and my family as a tool to disseminate information, but I am amazed to hear how many of you actually find this to be a source of entertainment in the way in which I write this thing. Love to hear that as I know I write in more of a conversational format and that irks the hell out of my sister, the professional editor-HA take that Pam. On a more serious note however, I have also learned that there are some out there I have never met but this has been passed on to you as a means to help in what you may be going through as well. All I can say is I am glad and I thank you for keeping up with my trials and tribulations and if this proves to be helpful or of some entertainment value to you as well, we all will win.

Have a great weekend.

Friday, August 20, 2010

Still on the mend.

Didn't realize I passed the two month mark while I was in Oregon last week so as we actually finish what is the 1st week into the 3rd month of the recovery, we seem to be fairing pretty well. A few items to watch but all in all...... The improvements are more subtle than in previous weeks, but I still feel improvements nonetheless although am certainly not out of the woods just yet.

My fatigue has diminished as has my insomnia. My taste recognition continues to improve and I now seem to be able to eat and drink almost anything of my choosing. It is odd though as those factors seem to hold true at the beginning of a meal, but as I progress through I often loose flavor profiles and the throat will get irritated and sore preventing the desire and ability to finish most things. I have also noticed on occasion, the throat will get irritated and painful enough where it will effect my speech so that obvioulsy still needs more time. On top of that, I must say my salivary issues have continue to deteriorate and that is depressing me a bit. I mentioned my dry mouth issues on the trip and that continues now that I am home as well. I simply can not have a meal, a conversation of any length or work out without a constant supply of water. I am experimenting with numerous potions and such that I have picked up or a dentist friend has given me and hope we will find a suitable remedy.

From a professional standpoint, I did have my monthly follow up with my oncologist yesterday. All in all he continues to be pleased with my progress but is also anxious to be able to run a complete set of scans to actually validate this. October (yes October now) can't come soon enough in that regard. Also, although he may be pleased overall there are a few flags up that we do need to keep tabs on as there are a few potential issues. There is slight concern as to the aches and pains I have in the head, neck and shoulder area but as he could not see nor feel anything in his exam, is attributing it to the healing process and my working out again for now. He did caution however, that if it persists over the next two weeks, to come in as he will run some further tests by way of a CT. As far as my blood work, although my counts continue to improve over all, they are still somewhat low for some reason. Further, my platelet count has actually fallen quite a bit since last month and is back below the normal range. Again not to much of a concern to him so that a relief but something he needs to keep tabs on. Obviously that was not really what I was hoping for.

He is also telling me again that my weight needs to come up. I took the opportunity to point out I did actually bulk up from the featherweight 183 on my last visit to a husky 186. Personally I am rather liking being back down here at Punahou weight although it is hell on the wardrobe-that actually seems to be the consensus amongst most of you as well -LOL.

That about covers it for this week!

Tuesday, August 17, 2010

Da Plane...da plane!


I actually got on one (four) for a little escape off the Island if you can believe that! In that however, I see I have been remiss and neglected to update last week-Sorry! Meant to do it from the mainland and forgot but yes I said mainland. Ended up being able to make the wedding of my cousin Alex and his new bride Kim up in the Ashland/Medford area of Oregon. Even managed to swing through Vegas and try retrieve some of the monies I inadvertently left there on my last visit. Although unsuccessful in that lofty goal, the entirety of the trip was a success and much needed break from all that has transpired in 2010. I did have some pretty significant discomfort that I had to deal with as the dry air of the airplanes, the desert and the Northwest were killers on my nose, mouth and throat, but outside of that, managed to have a great whirlwind of a trip. Had some fun in Vegas - then up to Oregon, a place I've never been. Little rural for me but certainly pretty and most importantly, I was able to attend what was the first wedding in this family in almost 50 years and I think Alex really appreciated it. Was even able to enjoy a Sunday afternoon of wine tasting at some Southern Oregon wineries on the Rouge River. A few of the reds were difficult or not drinkable for me but all in all, I was pleasantly surprised and enjoed the entire experience! Found a few new wines too although most too small to find here in Hawaii. All in all, not bad progress I must admit and now to address the balance of the taste recovery, the dryness that is certainly related to some ongoing salivary gland issues I still hold hope are not permanent and now oddly enough, some muscle pain I was first attributing to getting back on a workout schedule and stressing dormant muscle tissue but not so sure now as given the body a break of almost a week to recover although it has not. Questions for the Doc on Thursday-more on that then

Friday, August 6, 2010

Freezing!

And that sums it up-always seem to be cold these days but then again, I have shed the winter coat haven't I? Odd as I was always the one that was hot and sweat quite a bit so interesting changes continue.

Speaking of change, guess we have progressed quite nicely as I am now being asked by one of my Doctors to take one of her new patients under my wing so to speak and talk to him in the hopes it can put things in perspective from a patient standpoint. Isn't that a switch! I was able to speak rather extensively with him earlier this week as he is where I was back in late January. SCARED and CONFUSED! You might recall I too was fortunate enough to be able to speak with Bruce early on who gave me some insight and perspective as well so more than happy to return the favor. I hope our conversation was as useful to him as mine was and hope this can be an experience that is as uneventful as possible. Wishing him the best-Good Luck William!

As far as my recovery and getting back to some semblance of normalcy, I am again happy to say we continue to show improvements on all fronts and the weekend is upon us. With Prima still on Kauai after last weeks race and the ensuing...umm...activities of fearless leaders Dee and Rick there is again no sailing tonight so heading out for sunset at the club and then to First Friday in Chinatown -my first venture out into that type of setting in quite some time, but Lisa is excited with a friend who just moved back to Hawaii joining us and the usual suspects certain to be out that we haven't seen in a bit. Oh and she wants to go dance. Figure I'll be good at our regular hangout, Du Vin, as not over the top crowded and a clientele in our demographics versus the rest of Chinatown-LOL-little leery on where she has in mind for the "dancing" portion as the entire area tends to be a bit of a zoo but we'll do our best.

We have also learned that at this juncture, wine still stings, beer is tolerable but not necessarily great so wouldn't you know it, my friend Jen convinced me to have a sip of her cocktail last week and surprisingly, it works! Believe it or not, as there is no acidity, no carbonation and possibly a slight anesthetic element....Ketel One on the rocks with a twist...ROCKS! In moderation of course, but we have the beverage for the eve!

Have a great weekend-Jeff out

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 years.....it 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.

YEAH RIGHT!

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!

Tuesday, June 29, 2010

5 Months

Here we are at the end of June and I reflect back to those first days of February. Wow-5 months of my life GONE and we have fought hard yet still wondering what the hell happened and where its going. I'm also here at T +12 days since the madness of the treatments has stopped and although the misery still lingers, I certainly hope this chapter has closed and we have been successful in eradicating this disease from my system. Of course I have to squeeze out the next 75 days or so as won't have confirmation of that until September so for now I must appreciate and be happy with the progress I am making and continue to do such although nowhere near recovered.

Day by day I seem to be seeing a little more hair returning, a little more energy for longer periods of time, maybe a hint of flavor in the ever increasing types of food I can actually attempt, although still very liquefied and soft-no BBQ action yet. I say that as I might have gotten a little overzealous over the weekend. Lisa back from her trip to Cleveland and was really missing her Friday sunset cocktail with Mom and the rest of the OCC Friday night atmosphere and although NO I'm certainly not there yet on the coctails we did it and had a blast, followed by Uncle Bo's for her favorite clams. I tried but not for me yet but was able to get down some pretty hearty soup. Saturday had a real breakfast inclusive of some over easy eggs and even some oatmeal cakes and full day at the beach at teh Club with some friends into the evening followed by a Sunday brunch with some corned beef hash.

STOP!!!!

Way too much and overloaded the system. Monday was miserable as the body has a way of telling you this and I was not treated nicely. Lets just leave it as I had a lot of time in the restroom and was not pleasant so have throttled back a bit and added back a lot of liquid based items again. That said however, the fact I am able to get more and more down every day is good and I am starting to notice certain tastes around the edges. Still very fatigued and good for a few hours at a pop but I would expect that to improve as well and as the eating improves, so follows the energy. Again, day to day as the adventure continues and my next goal-Macfarlane weekend coming up here for the 4th!

Wednesday, June 23, 2010

Oh Boy-Slooooowww going on the recov!

Here I am at T + 5 days since we concluded treatment and wow-I feel worse. The pain in the throat when I swallow or attempt to speak has grown in intensity-very acute but increasing nonetheless as I am actually increasing my pain meds but to no avail. Man would it be frightening if I didn't have any of those that is for sure. Of course, I was told this would happen and that I can continue to expect it for a while as the radiation actually compounds on itself after treatment but who believes until it actually happens right? My daily nap regiment hasn't subsided at all either. A blessing I guess but sleep is something the body is craving during this. Of course the meds assist there too. Finally is the eating issue still jsut that, an issue. Although I somehow seem to be ingesting more and a variety when I actually am able to swallow, however I continue to be amazed at this 185 lb number that I see on a scale-hell I haven't seen that number since my Punahou VB days. Of course this is not a good thing for me now, but it does explain why I'm very weak and lightheaded these days-need to change that and get some strength and weight back-in moderation of course but boy I can't wait to be able to enjoy food, beverage and good company again! Missed two back to back birthday weekend events, an out of town family friend get together and now Lisa back home needing a vacation from her family vacation but day by day, this is still quite an adventure.

Friday, June 18, 2010

And then there were NONE!

Treatment is officially completed. Chee Hooo-we actually did it and this part of the nightmare is OVER!!!!! Thank God-My last zap session is in the books and they even gave me my mask as a parting gift! LOL-maybe a Halloween costume but for now we can try and recoup as soon as possible and get back to some semblance of reality. Need the throat to heal so I can eat as atually being down in the 180's is not actually good seeing as haven't been there since high school. Day by day!

Sunday, June 13, 2010

5-4-3-2-1 The coutndown continues!

FIVE more treatments and we are PAU. Can't wait for next weekend and let the healing begin as Friday will now be the end of my treatment barring any additional hurdles. Thank God.

Speaking of hurdles, I have been remiss in keeping this updated and notice I haven't lived up to my promise to fill in the blanks from the impromptu Queens visit so lets highlight.

I left you last with the first day fiasco and platelet infusion. What a night that became. I took the unit just fine. It was similar to the Cisplatin infusion as a nurse must stay with you throughout to make sure there are no complications and immediate rejection. I had none and the rest of the evening went fine. Somewhere in the early morning however, there apparently was an incident and I caused quite the stir on the floor. I say apparently as personally, I have zero recollection but it was quite the scene with the whole team involved. When I wake up in the morning, I notice my throat hurts exponentially more than when I went to sleep and there are a bunch of medical personel overly interested in ME!? OK-What happened you asked (Me too) They have these new beds at Queens that register your temperature, heart rate and a few other vitals i believe just by laying on them. Mine registered a rapid increase in heart rate up into the triple digits so the nurse came in the check on me. I have also been told I have a form of sleep apnea to begin with so this must have been a time I was taking one of those alleged breaks from normal breathing patterns and she sounded the alarm. In her mind, I am choking on my own phlegm and I may very well have been so they were trying to wake me up to have me cough and clear my throat and I guess I didn't want too. She tells me I did finally wake up and they were forcing me to cough, hack whatever to clear and it wouldn't so in come some suction tools and the like-hence my tortured throat as it was raw to begin with. This went on for 15 minutes give or take until they were satisfied I was no longer going to choke but the odd thing.......I have no recollection whatsoever. They figure it was a cross/overreaction to a sleep apnea, a reaction to the infusion and morphine but apparently scared the heck out of them. With the exception of the throat pain, probably a good thing I have no memory.

Rest of the day uneventful, watched the horse race and slept a lot as very blah about everything and that is how the rest of the weekend went. Monday morning and I am awakened by my Radiologist asking if I am ready to continue with my treatments today WTF! NO! He takes the answer and says he'll call me tomorrow. HELLO-last thing in the world I want is to go get zapped. My burns on my shoulder are the only thing showing improvement with this silver ointment they are using but everything else is no better (Although all my counts are improving) The concern however is I am still not eating or drinking near enough as the throat is still so damaged.

More of the same Tuesday with the counts continuing to improve and the Doc and I discuss my interrupted zapping sessions. the radiologist got with him the day before and talked it over with him and he to asks how I feel about it as there is concern I have been on too long a break. My counts are such he feels it is okay. We then talk on getting me some infused options for subsidence as I am NOT going home today. Great idea as I know I'm loosing weight and the infused hydration is great but need food. Unfortunately, I never hear from him again that day. I do get a call from the head zapper again pleading with me to get back on schedule. He got me with the fact he was not going to have me "make up" the lost days and i can just continue with my existing schedule. I confirm with him that means one more mega treatments and then the 7 directed tapering down and agree to get it done. That in its own right presents my biggest problem of Hospital "procedure" as well as the fact on this side, the nurse set up is much different than my prior experiences as you never see the same one twice. That means retraining every day and that gets humbug! Although I am no where near the mobile unit I was during chemo and have barely left my room, I have to draw the line on being transported to the dungeon in a gurney. NO WAY I am perfectly capable of walking thank you. They will have nothing to do with it, it is procedure. I'm only riding the elevator down 7 floors and walking around the corner but we negotiate to a wheel chair. At least I can say my FINAL heavy dosage of radiation is now in the books!

Wednesday I awaken to the Doc on his rounds and I bring up the food factor again. I have been told of this big white bag of goodies that is wonderful. He is aware of it but hardly uses as his goal is to get me to a point where i am self sufficient. Hey, I'm right with you and understand however, I'm not so lets get this feed bag hooked up so long as your not letting me leave. He laughs and says he'll talk to the pharmacy. He comes back a few minutes later and says the order is in. Zapping time approaching and sure enough, here comes transport with the damn gurney again! NOT! I already have today's nurse willing to walk me down as he never seen the dungeon and he is curios so let him deal with the "policy" but all works out. When I get back, I ask him about my "dinner" and he tells me its ordered and it is such a specialty item, they only make once a day and hook up at 6 pm. Like clockwork in comes this 2 or 3 gallon of milk is the best way I can explain it-Dinner is served-wish we had done this for the last few days as I'm down into the low 190's and that is light for me.

Finally comes Thursday and Friday is King Kam day so my counts are such and I am getting these nutrients from the feed bag that we determine it is release day! Finish the bag and go home-Yee Haw. I knock off one more zapping session and with the Holiday leaves next week for the final countdown of 5 and at 6 o'clock, I am disconnected after a week and discharged.

Quite an eventful yet a complete waste of a week as well but I'm out!

Wednesday, June 9, 2010

Still at the Spa

Just a quick update-lethargic as hell with 2 friggen IV's sprouting off my forearm so no wonder. Been a week of up/downs yet I still find myself training new nurses here at the Queen's Hotel & Spa. Will write up the adventures and post soon, just not up to it right so an FYI as to my status have to suffice here on Wednesday night.

Friday, June 4, 2010

Setbacks! Safe to say that damn train finally found me!

And boy did he ever lay me out. Granted I've made it all the way to what is essentially the last week of treatments in this entire ordeal with limited overall damage but when he got me........he making me pay the price. This not the first time I've eluded to things turning on me over the past few weeks however as I sit here in my room at Queen's, I seem to have the time to catch up with some more detail on this blog.

That is right, I said Queens as I have been readmitted, although hopefully only for a brief visit. The first 24 hours back in and maybe, just maybe they've figured it out and things will settle down and can go home over the weekend...at least that what I'm hoping for. Lisa and the boys take off for Cleveland on Tuesday and I certainly don't want to be holed up here and not see them before this 18 day stretch begins so some added enticement for me to escape as soon as I can!!!!

As you know, I've been commenting about how this radiation has been kicking my butt....but almost over. Yesterday was to be treatment 28 of the 35 total, however, 28 was the end of the major regiment he had scheduled to administer, to be followed with a reduced regiment and taper it down to the finish line next week however, I left the house yesterday already making my own decision to talk to both the Radiologist and Oncologist teams about completing this one last treatment and calling it quits. If that was to be the case, we would probably not do yesterdays chemo regiment as only something we were doing to concurrently with the zapping sessions so don't see the need.

WRONG! The whole process and decision had been made on my behalf and I would find that out before I even saw my ontological nurse friend.

To review, the previous Thursday, Dr Cho cancelled that weeks chemo due to my platelet counts dropping below 80 (to 44 to be exact,) and that puts you in the danger zone of being septic. Instantaneously upon seeing the numbers pop while still with the vampires, I see the number has dropped alarmingly further and Carboplatin is a no go and for some reason, I am concerned with these new numbers that they may be making me a reservation next door. It took less than 3 minutes into the appointment to learn that is exact.ly what was happening as I also found I had a fever confirming I have obviously developed or am in the process of developing some major blood type infections. What I didn't realize is this meant NOW! Don't pass GO! Don't collect $200! get your ass in that wheel chair as we'll call admissions and get you a bed. I overhear it is going to be a few hours so they want to hook me up to an IV and start flowing in some meds and fluids here in the office until the Hospital is ready to take me. I of course have other ideas of what to do with this time and figure I might as well head home to get my truck out of the garage so as to not tack on god knows how much in overnight fees, pack an overnight bag and pick up my computer and iPod-(no laugh-necessities in this place!) Liability issues in play now I'm sure as no one likes that idea one bit-so you know me-I finally had to pull that "non-compliant behavior" card and tell the NP I'd be back in an hour. She was seriously concerned and pleading she couldn't let me do that so I wink and say-alright-I'll just go to the restroom, should be back over at admissions in an hour (wink-wink). Must be serious as in 61 minutes my phone rang with her asking where I was-Wow really? No worries, on the freeway heading in as a passenger!

She's done a lot to me and that put her at ease. It was jsut then I realized she was on speaker so she may have just had her own interrogation of sorts-I hope not as she has been great.

In any case, shortly after 1 pm I find myself walking into the now oh so familiar unit on the 7th floor of the Queen's Hotel and Spa! Im greeted by some of the staff that actually still recognizes me (don't laugh, harder that you'd think with the lack of hair and now what has become over a 30# swing in weight top to bottom as I'm sliding in just shy of 200 this week). With talking still extremely difficult and painful, I try bypass some of this and get pointed to my new room. "But you're not scheduled in here Jeff" says one of my old nurses. Confused but tell her I am and Dr Cho's office called it in late this morning and she pecks on some more keys, looks up and I immediately see she is not happy. I hear her say aloud I am checked into Diamond Head tower this time.....and that generates a few similar looks from other staff-they obviously don't like this as it turns out hat is the supped up, acute care unite side of the ward. i.e. special projects and problems. Uugghh guess this is bad and it involves ME!

Ironically, during all this my dear Sluthy Lucy is on the ball an doing her Google/WebMD due diligence for me and sends me and an urgent text with her results appears. Bottom line is no-this is not good and could develop into some very serious problems so she is ecstatic Im checking in and heading to my new room. To be honest.....SO AM I as I am right at my limit at home and should something really bad develop, I have very little wiggle room.

Being a newbie in the new section, all my previous experience in the other side doesn't count and I'm stuck in the must do's/don'ts of hospital administration and have no option but to go through the inpatient and floor procedures as if I'd never been there before. Truth is, I hadn't I was on the next block and could have been Romania as far as they knew-LOL Once we are completed here, inclusive of meeting the Doctor on call, and no-not Mr Bill, we checked that this morning, we can now put in a prescription order, get my IV installed and get some other tests done. By the time this is all complete and I am actually able to finally try relax ....the efficiency.

Bottom line, I am now hooked up to a few different antibiotics, some hydration bags with potassium and electrolytes (I know I need these bad boys) and they are preparing my very own morphine drip-complete with and self administered button to be used as needed! Too funny as it arrives in its own security lock box and a preprogrammed password protected keypad to prevent any "excess" dosage. Oh yeah-if that doesn't help!

This morning begins with the vampires sticking sharp friggen needles in my arm all the while smiling and saying "Good Morning" Sadists! the entire bunch of them and by 7 am we looking at what problems have developed in the overnight and how to address them.

First off my day nurse for the day seems fabulous-very nice bedside manner and seems to know her stuff. She suggest a meeting with pain management team to put me on a program that really works for me and I'll be able to leave with so she sets out to find the Dr on duty and set me up with the "pain team." We also agree on this silver based ointment that she'd like to administer to these burns on my neck as they are so bad. Third time of heard that medicine mentioned so all for it. She gets all that in order throughout the morning and comes back to apply this magic silver potion. So far so good-now can we get it in a liquid gel so I can administer INSIDE as my throat looks like the outside, inside. Proved that one last night as in a hospital, they like you to keep everything and I mean everything, even those bound for the toilet. WARNING: Graphic nature here.........I knew last night in clearing my throat, not only did it hurt like never before but I felt something come loose and come up with the phlegm. Turns out, just like the outside, my skin is literally sloughing off inside as well and what I felt was in fact strips of skin that were literally being torn from my throat- I mean OUCH! That sht hurts so pain team please!!! Where might they be.

Further, and now with the condition of my throat deteriorating we also need to address my count situation - most seem to be reacting properly except these damn platelet's-fallen again to a mere 17 and that is a problem as I am now a serious risk of bleeding out. If I so much as bite my tongue, or cough up my throat as the case may be. We spend the next few hours doing more blood work to determine what mine is as well as allergy checks........and I hear the word "transfusion"

STOP!!!!!

Someone better explain as I have read countless issues in the past few years on transfusions gone bad. Slightly different in this case she tells me as only looking at platelet additions, not whole blood and much less risk of complications as they come from single donors instead of a pool of donors as full blood would be. This is another discussion in its own right but needless to say, we took on a unit of the bright yellow clotting agent and hope what few of my own I have left bond with them overnight.

All in all a very busy 24 hours and praying for progress tomorrow-unlike my last visits here where I was the one on the prowl and in constant motion, I'm much more subdued this trip until we can get a handle on this and I can get to rebuilding the body! That said...Good Night

Tuesday, June 1, 2010

The Final Countdown!

I HOPE! But that what is in the forefront of my mind as I prepare to head in to the zappers for T-10 treatments-YeeHaaa. That said however, it's getting to be quite the challenge I must admit and I cant let myself get too excited as there is a substantial wind down recovery period I can not forget. Take this past 3-day Memorial Day weekend as a prime example. I got three days reprieve and honesty, I am more beat up right now than I was when I walked out of treatment Friday-This is nasty, sneaky stuff. Remember, you see and feel nothing while being administered but boy does it cause havoc. The pain I am still going through in/on and aroud my neck is indescribable AND, I'm on some heavy duty meds as well. So much so they have been reeking havoc on some of my other body functions that create their own set of problems. Suffice ti to say, I was able to finally address tat problem in the wee hours of Sunday morning-quite a relief after close to two weeks to know everything still working, however slowly and painfully.

Anyway enough of that and I know I'm rambling here but really not too capable of sharing much else-the neck lei, the burns around my neck, have become bleeding blisters and you can imagine the type of sunburn you need for that to happen-Lidocaine, Aloe, lotions.....no avail, just try not to move too mush or quickly. Now take that burn level....ditto on the inside of the throat. I have developed one taste that I am aware of unfortunatly and is of a nasty burnt flavor. Figured out as I had to cough some over the weekend it is not only painful as hell, but I came up with some dark (ie bloody) phlem-Ahaa-hence the new taste-it is a burring flavor-that of my own throat

WONDERFUL-10 more Jeff-just 10 more!!!!!! We'll worry about the recoup period then but lets just get there please!

Off to the zappers and then home-needing that nap today big time!