... And Pay for it I did!

Well, Thursday afternoon and evening following the Erbitux IV were not bad at all, in spite of all the Rain, by which we were rewarded with a great Rainbow over the Iao Valley, as seen from Amanda's "backyard." Feeling a little tired, it was easy to go to sleep early, not long after the Little One's were tucked in. I'd stopped the Vicodin a couple days before, thinking it was a "good thing" and had only taken one half dose of the Oxycodone that morning, just to see what I might expect from it's effects - which seemed pretty nil. In hind site, BIG MISTAKE. I awoke for the first of a half dozen or so times at about 11:30pm, in a cold sweat, with a surprisingly dry mouth, a strong urge "to go" and an unexpectedly uncomfortable headache.



And so began what I presume could become a very unwelcome, though (especially now) not unexpected routine. I think the longest I went was just shy of one and a half hours (that'd be "every 1 1/2 hrs" in the "short version"...). The dry mouth and headache just kept getting worse. From the first awakening, I'd gotten my trusty ol' H2O bottle, and wound up going through about 6 refills. It must have helped some, but it sure didn't seem to at the time. And the headache... OMG! Guess it's part of the payback for having never really been bothered by the bane of brain bashing noggin knocker headaches, or even little ones very often. Guess I have a new understanding for those of you who suffer the occasional migraine - won't be making light of those any more...



So, enough of that... After getting up finally, and reporting my experiences, I went straight to the Oxycodone; and an hour later, I felt fine, but the Headache was still banging away trying to burst out through the top of my forehead. Would that I had my Peppermint Oil, but alas, it had inadvertently been left in Lahaina. Amanda suggested Children's Motrin (liquid, mild, pink...) and after a little bit of checking (I have soooo much info on all this, I think they've covered everything), we concluded that Motrin/Tylenol is "OK" - so, we (she) settled on a 20ml dose, and finally after another hour, I could actually tell it was working. I'd progressed to coffee, then grape juice along with another bottle or two or water, and the dry mouth seemed to be floating away as well. Oh Joy!

While I was feeling "crappy" and just lolling in front of the TV, Amanda managed to sort things out with the tentative plan of "Kelly fixing Dinner." It ultimately was decided that we'd all be going up to Anne's in Makawao. Well, I had a wild hair about needing to get back to Lahaina, to check on Mail, get some clothes (I'd originally thought I'd just be making a day trip to Amanda's and after leaving the night before to allow for the rain, and then spending another night, I definitely needed them), and to check on Marcia's (Seabern, a Dear Friend and my Landlady*) computer, as she'd called to check on me, and let me know it wasn't working...

Well, I actually made record time; Left Maui Lani at 1:45pm, drove to Lahaina, stopped by Emerald Plaza to pick up a ladder from Bear,* home, took a shower, packed a suit case, checked my mail, determined that Marcia's Monitor was maki and didn't have time to change it out, stopped for a tank of gas, and made it back to Amanda's at a little after 4:00pm, perhaps my personal best! We then all piled into Kyle's truck (Carl & Amanda had been out sun seeking, and the boyz had emptied the truck - marble slab rack & tools -) as Anne had requested Kyle do a dump run, to get rid of all the debris created by Carl's hard work around the house and headed up the hill. Turned out that nobody had told Anne that I was coming, and nobody had told me that Kelly who had worked all day wasn't cooking dinner. It can get confusing at times, but only if you try too hard to keep up...Typical for this Clan. No matter as everyone enjoyed B-B-Q steak, boiled potatoes, corn, broccoli, Cesar salad, garlic bread and 5 flavors of ice cream, thank you Anne & Amanda. And that was Friday.

Saturday was kind of a lazy day, a bit of shopping, Carl left at 2:00pm, returning to Las Vegas and his real life a day early, to ease the load on overloaded Wendy (He's the Good Son), and then Amanda insisting on putting up her (outdoor) Christmas lights, only to have it start pouring 5 minuets after she'd started... Hmmm, I might not of mentioned that along the way (we'll blame Kyle for this) we discovered FREE Slot Machines!!! Pretty entertaining, providing you DO NOT PLAY FOR MONEY - and that's all I'm saying about that! If it's not your thing, don't even bother to go there. And if you do, you're on your own, and blame Kyle, not me.

Sunday, Gary Hipp and Family came over for weekly "Church," and Bible study, while I opted for a trip to Ace for a few necessary essentials (stapel gun, pruning sheers, Oxyclean, light bulbs and a 1/4" dowel). We all enjoyed a good lunch of stuffed bell peppers, thank you Amanda. After, and with full stomachs and an empty schedule, everyone settled in for a brief Winter's nap... With any luck, and weather permitting Monday I'll be able to spend some time with Kelly and put up her Christmas lights, as I've been promising since before Thanksgiving... Tuesday and Wednesday I should be back in Lahaina, and then Thursday the real fun begins...

* In a future post I'll provide a run down of my very best Animal Friends of Lahaina (Bear, Thumper, Sparky et' al) for those of you who may not know them...

The Hurrier I go, the Behinder I get...

After a brief visit with the Kidz over Lunch at the Club, I stayed for Monday Night Football - well, the first half anyway. Then it was off to deliver a new Laptop I'd set-up for Friends Steve and Kathy Taylor, well, Kathy's actually. Tuesday was chores, bill paying and job hunting, all in all pretty boring, or so I thought, until I received an e-mail from Steve, alerting me to the fact that Kathy (who works for Paradise Television) had arranged for the filming of a TV commercial for TERALANI SAILING CHARTERS, and that they'd be going out on Tuesday and would I like to go along? Well, needless to say, I did, and it was a great time to say the least.

Wednesday evening we had some Kona weather moving into the Islands, which means wind, rain and high surf. Fortunately I decided to head over to Amanda's early Wednesday afternoon, knowing that I had to show up at Kaiser for a Stress Test at 8:00am, prior to the start of my Chemo and the Erbitux transfusion. Well, it was darned good that I did, as it was POURING all day Thursday.

OK, so the stress test wound up being pretty much that. Driving in the rain, in Pearl is stressful enough, I'd of never made it if I'd of had to drive from Lahaina. After meeting Steve the Tech, and Kathy the Nurse, they hooked me up to the 10 lead EKG machine, strapped on the BP cuff and explained that they'd do some ultrasound imaging of my heart before and again after my stint on the treadmill. The objective was to have me reach 60% of max heart rate. The tread mill starts out slowly, then every three minutes increases. While I can't recall the exact numbers right now, I'm quite pleased to report that not only did I reach the 60%, I actually got all the way up to 101% and survived. Following all that, they called in the Cardiologist, Dr. Gerry, who reviewed the results and said, "Well, you've got a pretty full plate here, but one thing you don't have to worry about, is your Heart!" Well that was good news.

After a brief trip back to Amanda's, Kyle returned from bidding a job, to watch Hailey, so Amanda could accompany me on the Chemo visit, which was a good thing. Before they started the IV I had a visit from Joni, the Pharmacist, who explained what all I might expect from the treatment. They do a very good job of making sure you are aware of everything, and know what to expect, no matter how much you may not want to hear it... And, I guess because of my size, they'd decided to give me an undiluted dose, 800 ml of the Erbitux, along with a hefty dose of Benedryl. Now, here's the shocker - the Erbitux cost is $8,000.00!!! OMG. I will not complain any more about my $15.00 co-pays for every single visit. Annette was the RN who hooked me up with the IV, and she did such a good job, I hardly even knew it was happening. And then, the high point of the day, the other Nurse there, Cheryl, came over with a huge can of Almond Rocca, and said, "Help yourself!" Be still my heart, I was in heaven. Or so I thought. Little did I know, that I'd be "paying" for it later...

The family. We were a strange little band of characters trudging through life sharing diseases and toothpaste, coveting one another's desserts, hiding shampoo, borrowing money, locking each other out of our rooms, inflicting pain and kissing to heal it in the same instant, loving, laughing, defending, and trying to figure out the common thread that bound us all together. ~Erma Bombeck

Surprise Visitors & some Med-Speak...

The unexpected just keeps happening around here... Monday afternoon I was surprised by a drop in visit from my wild & crazy Children, who seemed to manage a "get-away-day" and wound up at Slaughter House... for "old time sake." From L>R that's Son-In-Law #2, Kyle, Amanda, yours truly, Kelly and Carl. If I look puffed up an perhaps a bit PROUD - I am!

Now, for those of you who've been waiting patiently, I'm going to share the details of the Doctors findings, in their own terms... and PLEASE - "DAM" (Don't Ask Me), as I haven't a clue what all that means, and have no intention of finding out. Oh, and for the squeamish or if you just don't want to get this deep - it's OK to skip the next few paragraphs, I totally understand, and normally would be skipping it myself.

(This is the Pathology Report following the Right Neck Biopsy on 10-31-2008.)

MICROSCOPIC DESCRIPTION: The small biopsy fragments has nests of hyperchromatic cells with adjoining fibrous stromal reaction with limited lymphocytes. The tumor nests have focal necrosis and limited eosinophilic tumor cell cytoplasm with mitotic figures present. The neoplasm diffusely expresses AE1/AE3 cytokeratin and p63, with absence of mucin vacuoles on a DPAS stain consistent with poorly differentiated squamous cell carcinoma.

FINAL DIAGNOSIS: Right neck biopsy: Poorly differentiated squamous cell carcinoma, consistent with metastasis. DIAGNOSIS COMMENT: While no distinct lymphoid background is identified, effacement of background lymph node architecture by metastatic carcinoma with associated fibrous reaction may be possible particularly as the biopsy tissue provides limited tissue sampling. The findings are consistent with the recent biopsy findings of invasive very squamous cell carcinoma involving the right tonsil. (Specimen # So8-20180)

(This is the Pathology Report following the Right Tonsillectomy on 11-14-2008.)

1. Right Tonsil: Poorly differentiated squamous cell carcinoma focally infiltrating skeletal muscle of tonsillar fossa.
2. Right medial tonsil fossa: No tumor identified.
3. Inferior right tonsillar process: No tumor identified.
4. Right lateral tonsillar process: No tumor identified.
5. Right base of tongue: No tumor identified.
6. Midline tongue base: No tumor identified.

Diagnosis Comment: Case reviewed in Pathology Staff Conference on 11/17/2008

Ron's Comment: All in all, that means removing the Tonsil should resolve the situation, and the Radiation/Chemo treatments are for the cell growth in the Lymph Nodes, and everything should be "peachy!"

"Knowledge is knowing a tomato is a fruit; Wisdom is knowing not to put it in a fruit salad." - Miles Kington

Plan "B"

A note about the photo... found this as Amanda's wallpaper when I showed up last Friday, and couldn't resist. They'd taken Tyler & Hailey out for a little fun, and the Kids loved the Merry-go-Round, which was (and still is) always one of my favorites. Ahhh, I remember those glory days in Griffith Park, Santa Monica Pier, and of course Disneyland.

OK - False alarm... Turns out I'm NOT starting Radiation Therapy today, oh, and my apologies for being slow in updating things here. Not really an excuse (truth is I've just been lazy), but this weekend was our annual Board of Governors elections at the Lahaina Yacht Club, and I had the dubious honor of heading the Elections Committee (thank you Amanda, Dan, Skeeter, Jeff & Chuck for the help). Alright, back to the treatment schedule changes...

Last Friday I met with Dr. Paul Coty, a Medical Oncologist (not the same as a Radiation Oncologist I've learned), who had the final say as to treatments. Well, the "short version" is, he's the guy that decides whether or not "additional" modalities (med-speak for treatment) were warranted, and he felt they were. Enter ERBITUX, and now I've crossed over into the dreaded CHEMO therapy arena, which I've since found out simply means "something" besides just Radiation. Please note... if you should research this further, don't wig out... as I'm assured it shouldn't be all that big a deal, in spite of a small percentage of cases which didn't turn out so well. Really.

I guess the ever present "good news" here is, what they're now prescribing is at the "minimalist" end of the spectrum, and while it does increase the side effects (read that pain & discomfort), it's not nearly as bad as numerous other options. Erbitux is an "accelerator" and increases the effects of the radiation. It's given by IV, which I have the first infusion this Thursday, and then once a week, every week until the Radiation treatments are completed. Turns out the significant side effect of this drug is I'll wind up with an extreme case of Acne, something I was never terribly bothered by as an adolescent, so it'll be something different. Again, more good news, I'll have a darned good reason to not have to be shaving! Yea, for that!

During the consultation, Dr. Coty explained he'd just spoken with a Dr. Scott Lippman, of the MD Anderson Clinic at the University of Texas. Turns out he's the Head of Thoracic/Head and Neck Medical Oncology. So, as far as expertise, I don't see how I could be getting better care. My "team" keeps growing, and everyone on it seems to have checked with somebody more experienced before making their decisions. Ya gotta love Technology.

So, the current "Plan" is, I'll have Blood Tests every Wednesday, then the Erbitux IV's once a week, on Thursday mornings and the Radiation treatments every day starting Dec. 18th, continuing until probably around February 6th. Hold on, more "good news" - I get Christmas & New Years Days off... as their Office is closed! Hurray. On that note - Adios for today, I'm off to the Club, Monday Night Football ya know...

Oh shoot... Almost forgot to let you know, the latest on Classmate Carl Belknap is the Ticker's doing fine, but now they seem to have discovered he's got chronic sleep apnea (sp?) and is either looking at having to sleep with some apparatus or other, or having an operation. I think he's opting for the Op... so please give him a moment or two when you're thinking those healing thoughts. And stay tuned, I've got an important (at least it is for me) announcement I'll be sharing in a future post.

"The only real mistake is the one from which we learn nothing." — John Powell

If the "shoe" fits, wear it...

Or in this case, the Mask! With Amanda at my side, we showed up at the Clinic at 9:30am, and shortly thereafter were ushered into the Simulation Room, where we met Robert, the Radiology Tech who would be doing the Mask fitting and running through the Mapping routine. He very patiently explained what was going to take place, and did his best to make sure I'd be "comfortable," as if anything could really accomplish that.
Truth be told, it wasn't all that bad. Amanda loved that everything was so high-tech. Robert had told her she'd have to leave the room when they started doing the imaging, but she managed to win him over, and wound up staying through the whole thing. Asking questions and snapping pictures the whole time.




Robert (who would be assisted by another Tech, Tim) explained what he would be doing, which basically would be fitting a plaster impregnated mesh over my head, face and shoulders, and then a couple of simple trips through the scanner to "map" where they would be targeting the radiation. Amanda came along and not only peppered the Tech's and the Doctor with questions but took the photos included here.













All in all it wasn't too bad. The flouride trays were a new treat to say the least, but I figured that out and was able to breath without flipping out. I'd thought about holding Bonnie's Beads during the proceedure, but opted to leave them in my "travel kit" nearby, as my thinking at this point is having "nothing" to think about or do, is best for getting through this. So, I've settled on one personal mantra that I've discovered over the years does relax and "take me away," which I may share at some future point. Which I'll no doubt be getting a chance to test the "getting away" part very soon. I'm to report next Monday at 2:30pm, and we're off and running! YIKES!!!

And so, here we are with the finished product. "Voila!!" A mini-Me.

The whole process took about 30 minutes or so, and I just kind of faded into the zone, and went with it. Fortunately I'm not too claustrophobic and don't find it too difficult to just relax.

Also I had no idea that Amanda was as busy taking pictures as she was,

We celebrated this land mark ocassion by going out to lunch. First choice of Amanda's was Manana Cafe, but unfortunate they'd closed up shop just a few weeks ago, so we opted for Koho's as it was nearby.

Previously I'd mentioned that Son Carl was out from Vegas for a brief Holiday visit, and he and Son-in-law Kyle (Amand'as husband) had headed down to Makenna for a little sun & surf. As we were done early, and Tyler & Hailey were at pre-school/daycare, Amanda said she was off to meet the Boys for a little beach time of her own, without the responsibilities of Children, and did I want to go. I opted not too, as for the moment Mr. Sun and I are at odds.

On our way home we got to talking and (short version) the next thing I knew was we'd decided to get everyone together (this includes Kelly & Family and Momma Anne, along with Carl) that evening for a B-B-Q at Amanda's. So off she went, and I had an appointment with the Unemployment office, following which as I was headed back to Amanda's, received a phone call from my Mainland visiting Friend Marcus, who had seemed to have (at least for the moment) developed a need for a place to stay, and was wondering if he could "crash in Lahaina" which of course, he was welcome to stay. We met at Borders (yes, Men can read too...) and he followed me to Amanda's. We had a great get-to-gather, and with four Kids running about, there was no lack of entertainment, including a screening of "Hancock." (No, the little ones were curtailed with the option of "Scooby Doo & Batman" in Tyler's bedroom or running rampant out on the deck. Mom - we had Chicken, Porterhouse steaks, Teriaki beef, and Calbasa sausage on the Grill, B-B-Q Asparagas and Broccoli (thank you Anne), and rice. Kelly was the hit of the evening when she broke out and made the fresh baked chocolate chip cookies. YEAH Kelly!

And that Dear Readers, brings us to the end of another day.

“Anything is possible if you don't know what you are talking about.” Green's Law of Debate

Brain Fade and Gatorade...

OK - so I'd first like to admit to being a bit overwhelmed and overloaded by all this, and things are happening too fast, and too varied for me to get it all in the right perspective. And yes, those of you who know me well will simply say, "So, what's new?" Fair enough, but I will also add that between stopping smoking, and having replaced my alcohol intake with Gatorade and Peppermint tea, my whole system is responding by accelerated electrolyte exchange evolution. In other words, there will be gaps and omissions. This is an effort to catch up a bit.

First, if not necessarily most important, I'm remiss for not acknowledging Mickey Mouse's Birthday last November 18th (coincidentally the release date, 11/18/1928 of Steamboat Willie). As an avid ALL THINGS DISNEY fan, this was an unforgivable oversight, but, life goes on, and so must I. Lest I miss an equally if not more important date, Friday, December 5th is Walt Disney's Birthday. Walt is one of my greatest personal Hero's. Sharing this day as her own, is an old High School Friend's Daughter, Amy Agajanian - Happy B-day Amy!

"If you can dream it, you can do it. Always remember that this whole thing was started with a dream and a mouse." Walt Disney

Now, to some THANK YOU's I'd like to acknowledge, the first being to those who may not get mentioned by name, or publicly recognized, just know, your thoughts and contributions have not gone unnoticed, unappreciated or unwanted. Next I want to thank another High School Buddy, Rick Ortenburger for his "Blogger" tip, on how to manipulate Dates and Time (would that it would be so easy in real life) - thanks Rick, it's so easy a Cave Man could have figured it out.

Next, my "Illini" Friend, Emilie Barry has sent me an Asparagus treatment recommendation (which she received from a highly respected Friend of hers - George Frye) which seems to be fairly substantiated. First reported in the 'The Elements of Materia Medica', edited in 1854 by a Professor at the University of Pennsylvania, stated that asparagus was used as a popular remedy for kidney stones. He even referred to experiments, in 1739, on the power of asparagus in dissolving stones. Dr. Richard R. Vensal, D.D.S. reported in the Cancer News Journal, December 1979 that asparagus might cure cancer. You take a can of Asparagus (Fresh is fine, but "cooking" increases potency of the relevant components, so canned works just fine in this case), put it in a blender, then take 4 tablespoons twice a day. Make a note here ya'll... it makes for a good preventative tonic as well. Ya'll eat your Greens!

On Monday I had a visit with my Dentist, Dwight Mounts, whose Office Manager Jeanine was kind enough to accommodate me on short notice, to have a set of Flouride Trays made, as the Radiation Oncologist had suggested they would be beneficial in minimizing stray rays from traumatizing teeth and gums. Following the fitting I had a couple hours before they would be ready, and I'd accepted an invitation from Bonnie Nelson, to visit her Garden in Puamana as she had something to share with me. Turns out she bestowed on me a set of Prayer Beads with quite a history. Strung by children in Africa and brought back by a Minister Friend who'd given them to Bonnie, she in turn had occasion several years ago, to pass them on to a neighbor who coincidentally was diagnosed with Tonsil Cancer. Well, he was successfully cured, and when Bonnie heard of my plight, she contacted him and asked if he'd be willing to give them up, which he was.

Now she's passed them on to me. Only thing about them though is, they didn't come with instructions. Seems like there's more than one school of thought on the subject, as I've already heard differing opinions as to their use! Seems like I've something new to delve into and learn about. Thank you Bonnie, I'll be sharing what I find in a future wandering. In the mean time, I appreciate having them, and will be glad for any benefit the offer.

And speaking of prayers... I'm going to have to come up with one of my own... I'm thinking something like this: Dear Heavenly Father. Thank you for your many blessings and your infinite wisdom and compassion. I know you've had a recent influx of prayers, far more than the normal load you experience. I apologize for being the cause of this, and ask your tolerance for the good intentions of my Family and Friends, and their Family and Friends. I realize that I may not be all that deserving, and that you certainly have many more pressing issues in these difficult times, but all these Folks mean well. Regardless of the outcome, of which I'm encouraged already, I have committed myself to being worthy. I feel your Strength and Love, every day and in every way, and theirs as well. Well God, YOU have a Great Day, and THANK YOU LORD, Amen.

"We make a living by what we get, we make a life by what we give." Sir Winston Churchill

Dry me a River...

It seems like awaking with a dry mouth is something that's going to be a constant. For whatever reason, earlier this morning it got me again. Funny thing was, the first thought that popped into my head was the line from an old Julie London song (originally written for Ella Fitzgerald), "Cry me a River...," and I just figured I was feeling sorry for myself. But you know, that wasn't really so. Then realized it was really "Dry me..." and I had to just chuckle. Life is good, and darned entertaining if you let it.

It's hard to believe how much has happened in the short few days since Thanksgiving, not even a week ago yet. First of all, I personally had a GREAT Thanksgiving day, spending it with my Family and many long time Friends.

Located on the slopes of Haleakala, the Ulapalaku Ranch has a fantastic view overlooking Kooholawe and Molokini, it was a wonderful place for the Holiday. Oh, and our "surprise" guest turned out to be my Son Carl, turns out Momma Anne flew him out to visit his Sister's. Lest you worry about the rest of the Family... Carl's Wife Wendy and eldest Son Cody drove up to Wyoming to be with her Parents, Brittany and Chase each had plans with friends of theirs, so all wound up having a good time.

My Folks were treated to a visit at Aunt Elaine's down in Anaheim, and Dad was surrounded by Women, as four of their Nieces were there as well. Mom gave a favorable report, and I won't begin to go into the Menu in this narrative. I fulfilled my house sitting requirements, barely averting an invasion of marauding neighborhood skateboarders who couldn't resist the recently poured cement spillway at the entrance to the property. Saturday was Bar tending School, this week was Coffee Drinks. Sunday was a party at a Friends in Kahana and I even managed to win the first half Pool for $100.00!! I owe it all to clean living. 8~) The real treat though was on the drive home.

My Friend Emilie Barry has been sending along encouraging words (as oh so many of you have) and recently encouraged me to be on the lookout, just after sunset for Jupiter, Venus and the New Moon. It's been a bit overcast and we've had some rain too, so it's been overcast in the evening. Well, Sunday was a BEAUTIFUL DAY, and so it was crystal clear as I was driving home about 7:30pm. For those of you who don't know, Kahana is North of Lahaina. As I was approaching Lahaina, I could see, just South and a bit above Lanai the two Planets and Moon. And oh my Gosh! They formed an almost perfect triangle, two eyes and a crescent shaped grin. Doggone if it didn't seem like GOD himself was smiling down on me. A nice big happy grin. I simply haven't the words, but just think of it, low in the South Western sky, Venus & Jupiter two twinkling eyes, and a big Cheshire Cat smile, with the trail of light reflecting off the Ocean, leading right to my doorstep. To say the least, I was moved.

Yesterday and today were a bit mundane, with chores and getting rid of my overwhelming "archives." Tomorrow I get my "mask" fitting and Treatment Simulation in the morning, and will report on same then. Thanks to all for the overwhelming support your sharing, it's humbling.

"Keep your mind off the things you don't want by keeping it on the things you do want." W. Clement Stone