The Continuing Saga of the Life and Times of Ronald Lee Wall.
Monday, January 26, 2009
A Good Time was had by All...
Saturday, January 24, 2009
Merrily we roll along, roll along, roll along...
Herbitox finger sores. Side of the fingernail, about mid-point along the cuticle what first appears as a small pus filled pimple, accompanied by tender red swelling, grows into an inflamed oozing sore. How fun! With the thumb and for finger on my right hand in full bloom, and a couple coming along on my left, darned if one didn’t break out on the big toe on my right foot. (Hope no one is too grossed out by these photos; just trying to share for th ose who want to know, as many of you have indicated that you do.)
The photo below was taken earlier, AFTER I'd discovered the AQUAPHOR ointment, so it's a little red, but nothing like what is was two days before, when it was REALLY red and SORE. Again, mostly these pics are included to document this treatment process and to test my ego, as they're not the most flattering... The Doctor has flatly told me NO MORE SHAVING, as they don't want anything more than is already happening to inhibit the treatments. Evidently even a THIN film of lotion or ointment can really disrupt the Radiation.
I've managed to settle into pretty much 1 1/2 ~ 2hr., sleep sessions at night. That's about all the time that I can go without attending to the "dry mouth" and if it goes completely dry, OMG now that is PAIN. The trade off there however is, it's been a good thing for everyone. Both Tyler and Hailey are still young enough that they wake up "in the middle of the night" and require a little attention (and often more) before drifting back to sleep. Naturally they've become dependent on Mom & Dad for that. Having become somewhat of an intruder to this nightly routine (an apparently welcome one I might add), I can't help but want to lend a hand where and when I can.
Not unlike most parents of toddlers, both Kyle and Amanda seem to often be sleep deprived, a syndrome everyone works out one way or other. So, with my being up at all weird hours of the night, it's very easy for me to be the first responder. However, that's only one side of the equation. And no matter how much they enjoy Grandpa during the day - seeing him looming in the dark isn't necessarily well received, especially with 18 month old Hailey, who's fine with a bottle of milk from Mom or Dad, but becomes hysterical and inconsolable it neither of them appears crib side.
To be brief here, this has gradually been changing with both of them becoming more receptive to Grandpa's comfort, allowing Amanda & Kyle to get a few extra hours of sleep here and there. Tyler mostly will want something to drink, a glass of water, Hailey instead wants to be held. Well, two nights ago, she was actually content to sit (and fall back asleep) with me on the couch, and Tyler's been content with me fetching the water. So last night, being the clever fellow I (think) I am, when Hailey whimpered around 1:30am, I took her a bottle of milk, which she was content to drink and go back to sleep. Thinking I'd get "one up" on things while I was up anyways, I took a glass of water in for Tyler, expecting him to awaken in an hour or two. Which he did, so in I went, snatched the water off the night table, and what does the Dear boy say? "Milk Grandpa!"
Tonight's the (Lahaina Yacht Club's) Commodore's Ball, our annual social event, and I'm excited to be feeling well enough to attend, and happy to have Amanda as my "Date!" The Kids are at the Beach right now, so I'm off to the shower to get ready. I should have a full report of the evening's festivities for tomorrow's report. Coincidentally, across the street from the Club, is Lahaina Galleries Front Street location, with this weekend being their Annual ART OF ALOHA celebration, with many of their "heavy hitters" attending. As I undeerstand it, hopes are high for a successful event, and Amanda and I might just pop in there (even though it's a private showing affair) just to say Hello to a few of the Attending Artists, Owners Jim & Nancy Killett, and a few of the Sales Staff. Heck, after nearly 20 years you got to acknowledge Folks you've been through so much with, and wish them well.
"If you only look at what you do not have in life, you don't have anything. If you look instead at only what you do have, you have everything." - (Anon)
Tuesday, January 20, 2009
With a little help from my Friends...
First, let's look at where I'm at... the photo above was taken this morning, it's the view I have out Amanda's office window, where I do most of my computing... that's sunrise over Haleakala, and the photo doesn't do nearly the justice deserved of the colors seen most every morning.
Next, there's the truly surprising, unexpected "little things" that happen behind the scenes so to speak. Here's a great example: Since our last High School Reunion in 2006, one of the many Friendships I've been fortunate to re-kindle has been with Barbara (Benjamin) Raub. A couple weeks ago, she wrote and mentioned she had a "friend" who'd recently come back from the MD Anderson Clinic in Houston, TX, and would I mind if she put them in touch... which of course I was all for.
Well, over the weekend I received a TERRIFFIC e-mail from Janice and Jackie Crowe of San Diego, and the truly greatest benefit (to me) is that it came at a time when I was near tears (no wait, the tears were there) from trying to coping with pain management, diet challenges, and skin care. In just three days, with the benefit of her advice and their experiences, a visit with the Radiation Oncologist, a phone call to my Dentist and a trip to the store, I feel good and am doing 112% better!
On Thursday last, my weight had dropped 5 pounds from the week prior, and they were VERY concerned about my eating. I hadn't been too much, but now I had to listen up, as obviously, continuing at 5 lbs., a week or more, I was gonna be in trouble; and the feeding tube is NOT something I’m keen on having to deal with. The pain meds were pretty much maxed, I could tell they were hesitant to prescribe more, for the obvious reasons there. However the pain levels associated with eating especially were overwhelming, so I was at a bit of a loss as to how I was gonna make it. My teeth were becoming more and more sensitive as well, and that made it tough to brush, with the already tender gums, tongue and cheeks. Not having clean teeth really increased the discomfort of the tongue and mouth – an overwhelming spiral I could see growing there. And Friday morning started with a surprising sensitivity of the skin and significant swelling of my neck and lower face. Things were NOT looking good.
So, it was with considerable relief to get their “TIPS” which actually turned out to be the “missing links” or confirmation of some of the things that were just plain uncertain. I had been prepared for the “sunburned” skin, and knew to “slather” on the “lotion” but none of the 3 different ones in my initial arsenal were really the answer. AQUAPHOR was the missing link there, and working just fine. Thank You #1. I keep a 16 oz., H2O bottle in every room, and three in the Kitchen plus two in the car, and manage to go through most of them daily. That’s at least 3~4+ liters, plus I drink a lot of other beverages (Gatorade, Royal Mills Iced Cappuccino, Peppermint Tea) including 4~5 cans of ENSURE as well. Thank you #2. With my adjusted Medication regimen I’m able to manage Cream of Wheat, Scrambled Eggs, Pureed (canned) Asparagus, Applesauce, Tapioca, even Yogurt and Vanilla Ice Cream (still my favorite) – so I’m gonna pass on the “Pumpkin Pudding...” Thank you #3.
In addition to the Caphasol, I have a MAGIC MOUTHWASH which has Lydocane, Maalox, and a few other things, which does the trick, so I just take it BEFORE eating (which I wasn’t before) since I can’t really taste much anyway. My Dentist also arranged for me to get some Fluoride tooth paste and we found an infant’s “Extra Soft” tooth brush which works just fine. So, like I said, things are looking brighter as most of the stumbling blocks have been minimized. Or at least I again feel like things are “manageable.” I surely don’t expect things to be EASY, but Manageable sure is a welcome alternative to Impossible.
So, let it suffice to say, the combination of all of the above has me "back in the groove" so to speak. To top things off, Monday I went in for my Radiation Treatment with Amanda, AND Kelly (and Maddison and Grayson) as they were both concerned, and wouldn't take "NO" for an answer. So, on we go...
"Experience is something you don't get until just after you need it." - Steven Wright
Monday, January 19, 2009
The Ultimate measure of a man is not where he stands in moments of comfort, but where he stands at times of challenge and controversy. - Martin Luther King, Jr.
Added some notes about Da Party
"The early bird may get the worm, but the second mouse gets the cheese." – Steven Wright
Saturday, January 17, 2009
Good News - Bad News
'Till now my mantra's pretty much been, "All in all I feel pretty good, it's just that my Tongue hurts ALL THE TIME." Well, that still holds, except for the "I feel pretty good" part. I can't say that I feel all that bad, but there's no doubt about it, I have to say the tongue thing is pretty overwhelming. I'm not even gonna try to explain it, so you'll just have to take my word on it. I think I might have mentioned that I'd "cried Uncle" on Wednesday to the Radiation Oncoligist, Dr. Makishi (well first I whined to Janice, the Radiation Nurse, who's been very understanding and a big help so far), and they came up with a whole new approach.
No more Oxycodone, they put me on a PATCH (Fentanyl) which by the way, I had to add a second one on the second day) and switched me back to the liquid Vicodin as a supplement to the patch. I got a renewed RX for the MAGIC MOUTHWASH too, and although similar this one I "swish & swallow" as opposed to "swish & spit" as I was on the previous one. Sadly, there's still not much relief, and I'll just have to hope for a new plan next week.
I took advantage of Marcia Seabern being my Driver on Thursday and rode back to Lahaina with her, knowing that Tom Warren was Driving on Friday, and could just pick me up before leaving Lahaina. As it turned out, we had quite a bit of weather stirring up, with a storm blowing in from the South East, bringing 40+ MPH winds, high surf and the promise of much rain.
The photo above is taken right in front of my home in Lahaina, looking North towards Kaanapali and no, we don't normally have boats in that close to shore. And, it's not an optical illusion, she's stuck on the reef, about 25 feet from the sea wall in front of Lahaina Roads. I've no idea if they got her off or not, as high tide was at about 8:00pm that evening, and there wasn't time to check in the morning.
As expected it was pouring rain by the time Tom came to pick me up. It let up a little for our drive over the Pali, but by the time we got to the Clinic, it was dumping in horizontal sheets. It was nice to have the half way mark finally met, but it sure doesn't look promising for the remaining 17 treatments!! I had originally thought I might return to Lahaina again with Tom, but between the weather and a less than mild experience with Thursday's chemo (I'd evidently not hydrated enough that morning and my veins were "flat"), I decided not too. Marny had two unsuccessful tries at inserting the shunt, and finally called in Annette who managed to be successful on the third, however my right hand still aches a bit. AND the biggest factor is not only is the tongue/throat issue debilitating, the outside skin on my neck and cheeks has gotten REALLY irritated (Oh boy, another good sign that the treatments are "working!"), I mean REALLY. I'll spare you the gory details, but it's a bit more than just red, tender and pealing skin. OUCH. So, lots of lotion, no more talking, and just dealing with being generally miserable.
There, I've said it. Every one's still welcome to call, and I do enjoy and look forward to the occasional phone message, but I'm sorry Folks, it's just time to stop talking for awhile. I'll try to be more diligent with the Blog, but for now, I need to do everything in my power to minimize the aggravation to mouth, mind and my skin.
When one door of Happiness closes, another opens; but often we look so long at the closed door, that we do not see the other one which has opened for us. - Helen Keller
Thursday, January 15, 2009
Mid-Week Party Time
Wednesday, January 14, 2009
Bloody good show Mate!
Tuesday, January 13, 2009
What a Difference a Day Makes…
It was with great discipline and patience I resisted the urge to just jump right in, so when Kelly showed up to take me for Radiation Treatment # 14, it was still charging, and I could tell she was a wee bit disappointed that I hadn’t turned it on already… As excited as I was, having “been there, done that” so many times for others, I knew enough to just wait, until first the battery was fully charged, and that I’d have enough time to see the Set-up through, from Start to Finish.
So, after Kelly took a couple of quick pics of Jake, my young charge and faithful companion while the Jones’s are away (that’d be the Family Cat), to assure Amanda that I have indeed been feeding him (as well as removing his various “trophies” which seem to show up inside the house almost daily) – we were off. And were greeted with a rather nice surprise, Joanna (we think her name is), the receptionist who we’d thought was leaving as of last Friday was still there. Evidently her situation had changed, and she’d decided to say. “Hurray”, as she’s a chipper little thing, and seems to always have a smile and cheerful greeting for everyone passing through – something that place really needs.
Anyway, she hooked me up with a re-supply of yum, yum, yummy ENSURE, which is a big help, because it’s the most substantial thing I seem to be able to get down these days, and is expensive as all get out when buying at the store. Then it was on to the next stop, Janice the Radiation Oncology Nurse/Receptionist to discuss what could be done about the non-effect of the OXYCODONE as a pain med, at least as far as the mouth and tongue go. She was encouraging, and encouraged me to use the MAGIC MOUTHWASH more frequently, as that stuff really does do the trick, just not for very long at a time. She also gave me a sample pack of some 2-Part product called CAPHOSOL, a “supersaturated Calcium Phosphate rinse” to see if it did any good. You take two ampules of aqueous solution, mix them together and slosh it around. Turned out to be the ONLY thing that hasn’t had an irritating affect just putting it in my mouth, so that was good. We’ll see how it does tonight for the dry mouth.
Well, that’s today’s report… Tomorrow will feature a visit from old Friend, former roommate, and co-worker at the Gallery for 20 some years, Past Commodore Steve Taylor, and will feature a ride in his sporty little Beamer (Z3 Convertible). I’ll be spending most of this afternoon and evening setting up the Laptop – full report tomorrow.
The most overlooked advantage to owning a computer is that if they foul up there's no law against whacking them around a little. – Joe Martin
Sunday, January 11, 2009
Snowed in on Maui...
Cousin Claudia Burnette was here from SoCal last week, with Friends, and we were able to spend an afternoon together and I really enjoyed her visit. They went out on TW's Woody Brown Catamaran, KAMEHAMEHA for a Sunset sail, and understand they had a pretty good time, including several Whale sightings.
Big news this week as well, Classmate Rick Ortenburger who is an avid runner (I mean serious runner, like a Marathon Man) and fund raiser extraordinaire has elected to "run" on my behalf in this years Salt Lake City Marathon. Read more about it here: HUNTSMAN CANCER INSTITUTE he presents the details much better than I could. I'm not sure that I'm deserving of such a dubious honor, but his efforts are worth supporting, and knowing he's doing it for a good cause, as well as his own Family Members too, well, when he asked, all I could do was say "Yes!" You can bet I'll be encouraging Rick to keep up the hard work and to Train like a Choo Choo...
Ok, so why am I in a slump...? Frustration I suppose is the biggest culprit. This is a bit like when I was younger, and had a broken collar bone. You can't put it in a cast, and it doesn't really look like any thing's wrong with you, so it doesn't really seem to others like there is. Very much the same as for years, after I was out of the Navy, with a chronic lower back pain problem, I "looked" ok, was a big strapping guy, and got no sympathy or slack when in reality, I could barely move. It's not for the want of "sympathy" but more just understanding or awareness. Anyway, that was then and this is now. The real difference is everyone gets the "cancer" thing, I do know that. So the frustration lies in the fact that, except for my darn tongue, I feel pretty darned good, still, and it just doesn't seem right.
Well, what I have come to realize as these days have slowly slid by, is not to worry, I'm gonna be feeling pretty darned bad before all is said and done. Now, I can't say that thought's exactly cheered me up a whole lot, but I think it's pretty well gonna resolve the frustration. The fact of the matter is, my tongue not only hurts, it REALLY HURTS. And the inside of my mouth, cheeks and gums have become increasingly sensitive. To such a point as to give me a bit of concern as we're not even half way through yet! My big concern is that the pain meds don't seem to be much help where the tongue and mouth are concerned.
Of course this is affecting my "diet" as well, and what I can (or feel like I want to) eat. Well, they'd told me all about this going in, everyone had in their own way. "Your mouth will feel like a bad sunburn." "Your tongue and gums will be very sore and tender, and you'll need to take care they don't become raw sores." "You'll have a metallic taste in your mouth all the time, and everything you try to eat will either taste like cardboard or coarse sand." So far I'd have to say they've been right on all counts. Well, there's "good news" there too, as my personal physician, Dr. Darcel Gilbert, has been tellin' me for years that I was clinically OBESE! Well, I think we'll be resolving that one in the next couple of weeks.
Ok, so enough of this... all in all, I am still doing just fine. My spirits are "well" and except for the oral discomfort I feel great. Still have pretty much my usual energy, and only seem to get the drowsies when I just sit around for too long. I'm sleeping pretty good, I get between 4 to 4 1/2 hours at a stretch, then it's time for pain meds and some H2O, and back to sleep. So, no real complaints. Heck, I haven't even had much of a chance to get bored or lonely. Kelly's keeping tabs on me pretty good, and I've gotten to see Madison & Grayson several times, as they were out of school still all last week, and I've had Doris, Marcia and TW to take a shift as "Drivers" giving Kelly a break there too.
THANK YOU EVERYONE, for your continued support, kind thoughts and well wishes. I'll try to do a better job of keeping the Blog up-to-date so to speak. ALOHA, Ron Wall
"Success is when we turn our stumbling blocks into building blocks." - Noah benShea
Friday, January 2, 2009
Nothing Noteworthy in New Year's News...
Well, in that I've been feeling pretty good so far, I rode back to Lahaina with Bonnie, we stopped at Maalea Harbor and had lunch at Beach Bums (they took over where the Blue Marlin used to be). I guess it was good, however, I think the ol' taste buds have about given up for the duration and my poor tongue is oh so sore... The cold ice water was wonderful!
After checking in with Marcia and Steve, to get an update on the neighborhood, I hauled myself down to the Yacht Club for a pau hana (yes, I actually had one whole Longboard Lager) and to catch up on the goings on in Lahaina Town. Then it was home again, home again, jiggity jig jig!
"I love quotations, because it is a joy to find the thoughts one might have, so beautifully expressed with much authority by someone recognized wiser than oneself." - Marlene Dietrich