Howdy.

I'm Bart, a married male. I'll be 74 in May. I'm here to offer support from a "BTDT, got the shirt" fellow (and incurable) patient.

In early '05, I went to see my PCP for a look at a large lump I'd just noticed under my right chin. He sent me to an ENT who did a needle biopsy. The path report from that mentioned Squamous Cells in a vague manner and I questioned my PCP about that. He was non-committal, so I told him that I wanted to know if it was anything to be concerned with, or not. He said that he did not think it was anything to be concerned about, so I ignored it. Until mid-2009 when I started getting a mild sore throat in that area and went to another ENT. Who advised me to get it removed, and ASAP. I did so.

My surgeon cleanly removed a tumor the size of a tangerine, and this time she read the path report to me and advised me that it was Malignant. She also set me up with appointments with a medical oncologist (MO) and a radiological oncologist (RO.) They, in turn, sent me for more diagnostic tests and treatments did not begin until they found the primary tumor, which was at the base of my tongue (and about the size of a golf ball! ) They also found three additional metastatic tumors in my neck.

The MO & RO decided on 8 weeks of radiation plus 3 applications of Cisplatin, three weeks apart, with the initial treatments commencing on the same day.

The MO wanted to hospitalize me for the first 5 days of the Cisplatin, but I had to refuse because I was, at that time, the sole caregiver of my 89 year-old maiden aunt who was living with me and my wife. The RO wanted to install a PEG before we started, because, in his words, "he was going to light my throat up like a Bessemer Furnace" and I'd be unable to swallow. I refused that also because it could be installed later if his prediction proved accurate, and in the mean time, I would be free of the aggravation of the PEG in my daily life.

I did agree to have a MediPort installed, and that kept me away from the gym or even working out at home, because the port has one end that is stuck directly into the Jugular Vein, and having that come loose inside your body is one of those things you don't want to experience, because you might not live long enough to get any milage out of it at the diner table.

In any event, for those who face this decision (to get a port or not), my advice for active patients is to forego it and use the opportunity to work out instead.

Although I am old, I was (and remain) quite fit, and have been lifting weights since I retired at age 58. At 5'9", I was a very solid 192 lbs when I started the treatments. Which, by the way, required me to drive 24 miles each way, 5 days a week for 8 weeks. And during which time I lost 38 lbs. And about 50% of my salivary production. And about 50% of my hearing range.

On the 10th day of my treatments, as I was starting to eat a bowl of ice-cream as a weight gain supplement, I noticed that the ice-cream tasted like cold poster-paste; no flavor whatever and the texture could only be described as "vile." From that point on, my sense of taste was completely gone for the next year, at least. It slowly returns, but the return is slow and unpredictable. I have knocked the cancer down three times now (each following courses of Chemo), and unfortunately, it seems that all varieties of chemo will take a toll on your nervous system. Hearing seems to be especially vulnerable, so tell your MO immediately if you start hearing tinnitis as he can change to another, less damaging chemo agent and save some hearing. That's why he changed me from Taxol to Taxetere midway through my second bout.

My Cisplatin treatments kept me in the chair for 8 hrs each, with a 15 min break to walk to the Radiation suite for my daily dose, then back to the chemo room, hauling my IV pole with me.

There only two good things I can say about Cisplatin; it works, and it doesn't cause you to lose your hair. Its easy to spell also, but� meh. It will nauseate you (big time) and probably make you lose weight. As I said, I lost 38 lbs because most days, I could barely keep one bottle of Equate Plus (350 cal, the cheapskate's version of Ensure) down. I gave up solid food entirely for that 90 day period, it's too much hassle when there is no taste, a vile texture and your minimal salivary supply is immediately absorbed by whatever food you have just started chewing into highly absorbent sawdust.

But the treatments did their job and I was free of detectable cancer for 17 months.

Until it showed up in my liver. Again, it took several months to decide how to treat it this time. The scans were not clear, it could have been one tumor or half a dozen because there were other (benign) growths there as well. We did a biopsy and determined that the primary suspect was, indeed, a distant metastasis and not a new variety, but there were others (he thinks they are cysts) that remained questionable.

The problem was that the area of concern was so large that radiation was ruled out, so we had to use chemo again. This time, the Taxol/Taxetere and Carboplatin cocktail.

I got that for 5 cycles (every Thursday for three weeks, followed by a week off was a cycle), Got scanned a couple of times, and eventually was declared Clean again.

On my first follow-up PET scan, 90 days later, it was back, this time in multiple locations in my liver again. Treated this outbreak with pills - my favorite - of a drug called Xeloda. I got started in October, '12 taking it 21 day cycles (14 one, 7 off) and two weeks ago, I got the news that I'm clean again.

Here's some things that you may encounter that might freak you out, if you're not expecting it. When you take a powerful agent, like Cisplatin, Carboplatin, Taxol or Taxetere, you will be given a blood panel/workup first. There will likely be days when one major element will be significantly below the acceptable lower threshold for that particular element and you will be sent home without any chemo. DO NOT PANIC.
It's just another manifestation of that inescapable law of the Universe, "Stuff happens."

My immune system crashed twice, and my red cell count at least once, and on every such occasion I was sent home without my chemo. Do not fear this, it's normal and it simply means you already have an effective level of the stuff in your system.

Most of these will make you lose your hair. It grows back, and fuller when it does.

Watch for neuropathy. Either tingling or numbness in your finger tips and toes; or tinnitis (ringing or rushing noises in your ear) and report it to your MO ASAP. These effects are permanent, but can be minimized by prompt attention and adjustments to your treatment.

A final bit of advice. Other than my first waltz with Madam Cisplatin, this has been a walk in the park for me. The reason is that I work out and work out as hard as I am able for at least a hour a day, three or four days a week.

This elevates the metabolism and keeps it elevated. It processes the chemo quickly enough to prevent most of the common side effects (You will lose your hair anyway, but it will grow back.) It's hard to do because you tire very quickly when you have a load of chemo inside, but do it anyway, you will be very glad when you see folks who don't.

You don't have to lift weights, briskly walking will help greatly as will any vigorous exercise. Heed Nike, Just do it!

Welcome to OCF, Bart! Its always nice to have another survivor join our ranks. Thanks for sharing your story with us. Sounds like you are a real trooper!

Hi ChristineB,

Thanks. From a real survivor as yourself, that's a high compliment. Thank you!

Bart

Howdy Bart:

I enjoyed reading your "experience" with the blasted "C" word - it was very uplifting. Like me, you probably didn't even know what an ENT was until you were finally sent to one. My symptom was similar (swollen place under chin on one side), and I was told I had a sinus infection and that was a swollen lymph node NOT! When my throat started hurting some several months later, my doctor just gave me antibiotics. I could see my tonsil on the right side was slightly red, but doctor just gave me more antibiotics. Time passed, but swollen place on neck didn't go away; tonsils stayed red; and I checked around to see what type doctor treated people with tonsil problems. That's when I went to an ENT. He did a needle biopsy that came back NEGATIVE. More time went by, so I was determined to get tonsils out, not thinking anything like "C," but because my throat was always sore. Two ENTs wouldn't do it because they said tonsils removed on an adult was a big problem and very painful. I insisted, to yet another ENT, who reluctantly removed mine in Nov. 2007. Yep,squamous-cell cancer under right tonsil that had spread to nodes on left side. During the time delay, I went from a Stage I to a Stage IV Seven weeks of radiation with 1/day week chemo, feeding tube, and all the works! It's been five years and PET scan in January NED, but the side effects of the radiation seem to be coming back, or at least that's what the ENTs say. They blame everything on radiation, especially when they can't "see" a reason for a certain problem. There, I've ranted enough. I want to welcome you to our Club, although sorry you have to be here. You hit the nail on the head about Christine. She participates in numerous OCF walks/events, and hopefully you will see her on Facebook speaking to those in attendance. She is GREAT, and the OCF is very proud of her. Keep posting - love reading success stories like yours.

julieann

Bart,

What a great post! Inspiring is an understatement. Continued success in your journey as it seems each step gives hope to all that face this damn disease.

"T"

Hi Julieann and fishmanpa (Mark)

Thank you both for your warm and friendly welcoming words! It's a pleasure to be here (hell, it's a pleasure just to "be...") My (first) distant metastasis recurrence promoted me from Stage IV to Stage IV c. Five year survival rate, from dx, is Zero for those of us with the "c."

That said, I've been in much worse shape a couple of times in my life with the same odds, and yet here I am.

On Nov 5, '66, I was a Capt in the Army, stationed at Ft Sill, OK. At 0530, I was the sleeping passenger in my then new '66 Corvette (yep, I was single. How'd you guess?) when the driver, a young German Luftwaffe Feldwebel (Sgt) decided to run a red-light to save a couple of minutes on the way back to his temporary barracks. His entire unit was at Ft Sill, training on a US weapons system that the germans were purchasing from us, but they were headed back to Germany at noon that day and had been restricted to barracks as of midnight. So he was AWOL, technically, and didn't want to get caught.

A local cop saw him run the light and lit up the party lights in pursuit. The kid driving panicked and put his foot in it, and the car went airborne. The OK HP estimated his speed at over 145 mph when it did. It cleared an Armco guard rail with all but the left wheel, tearing that and the entire Left rear suspension from the car which continued airborne for 264' before landing on the nose and going end-over-end for more than 600' after that.

I was declared DoA at the scene, he was found over 80' from the car with a shattered left ankle, several cracked vertebrae and a 7" long fracture of the skull.

I had a right side flail chest; 7 ribs were broken off about 3" from the spine and overlapped about 3"; while 5 of them were broken off again on the side. My right lung was shredded by the jagged rib-ends and my chest cavity was filling with blood and bodily fluids which threatened to collapse the left lung.

I was admitted to the Post Hospital, officially DoA and left on a gurney in the ER OR while they worked on the kid for over 4 hours. I was actually taking one ragged-breath a minute, so they put a sand bag against my chest to give it shape, and a saline IV.

I'd thought that trying to walk on a tibia broken into 4 pieces was painful, but I was wrong. As soon as I was able to maintain consciousness long enough to stay sitting up, they sat me up and told me my lungs were now full of blood clots and I would have to cough them up. Now I don't know if you've ever broken or even cracked a rig, but that is painful. So much so, that trying for forcibly cough for any reason is way up there on any list of things to avoid if at all possible. I actually did this, and produced hunks of what looked for all the world like large pieces of raw liver the size of a man's hand with his fingers extended straight out.

Although they told me I'd be hospitalized six months and on convalescent leave for another six months, I walked out of the hospital 39 days after I was wheeled in on that gurney. In 67 days from the accident, I was declared fit to jump out of airplanes again, but the Army, in its infinite wisdom, decided that I was too big a health risk to go to Vietnam, and so I got out of the Army and went over with another government agency.

Three weeks after landing at Tan Son Nhut airbase, I was in Pleiku in the central highlands, getting assassinated. I took two .32 cal rounds to the gut and two through my right thigh, one of which went squarely through the Sciatic nerve and the other passed harmlessly through the muscle. That cost me the permanent loss of control of my right foot and the use of my calf.

The ones in the gut were not so benign, one went through the iliac artery, the second largest in the body. I actually bled-out in probably less than 3 minutes; the doctor at the 71st Evac Hospital, who operated on me when they brought me in, later told me that my survival of that was impossible, Rigor Mortis should,in his words, have been leaving my body by the time he saw me

I have that one in the back of L3 in my spine (it hit the spine - talk about a bone bruise...) and I have the other also, deep in the pelvic cavity. The two of them got my liver, spleen and nearly every fold of intestine in my body. Now that, mes amis, was not a fun recovery.

But I did recover and was back in Vietnam, at work, in less than 4 months later and stayed there for another 3 plus years doing my job.

So, why am I telling you this tale of woe? Because there's no woe it it at all.

When the shooter produced the gun and advised me that I was a dead man, I had every reason to believe him; and I have never been so terrified of anything in my life! All the clich�s are true; I thought that a freight-train would come roaring out of the hole in the end of that gun, and smash me flat! He was between me and the only escape route, and he started shooting when he was only 6' away!

I realized in a most visceral way that my string of luck had finally run out and I was definitely going to die in the next seconds with no hope whatever of rescue or escape; and at that moment, I had an overwhelming flash of Satori!

I realized that I was a dead man, but DEAD MEN HAVE NOTHING TO FEAR!

Really, I cannot possibly tell you how wonderful that feeling was! I'd been dominated by fear since I was a very young kid, and suddenly, it was all gone!

Not only that, but when I applied to Johns Hopkins for admission to their study to determine the impact of Psilocybin on death anxiety in patients with terminal cancer, they refused me because I don't have any. Dead (wo)men have nothing to fear, and freedom from fear is the best feeling in the world!

No one gets out of here alive so don't worry about it. No matter what the cancer takes from you - you always have something left, celebrate that and accept that life taking its pound of flesh is just the cost of living at all.

Well, we here are all paying our dues to life now, please make sure you get full benefit from the membership and LIVE.

My brothers and sisters of the big C.

Bart: incredible. Your courage and attitude are more than inspirational, they're just plain amazing. Thanks for the story and for being here for all of us.

Welcome Bart, and thanks for sharing.

Hi David2 and PaulB,

Thanks for the kind words, gentlemen!

And David, I don't see that as courage, although I appreciate the compliment. It's just the stuff of life. I seem to have been blessed with a "Timex" constitution, but it's not from any virtuous quality on my part.

Just as you, and everyone else on this board; something happens and we deal with it simply because we have no other choice.

We play the hand that life deals us, quite simply because we have no other choice.

I will say this however, I learned from Buddhism not to attach to outcomes. That way, you are never disappointed, whatever the outcome might be. When you learn to condition your thoughts that way, it all becomes good.

Bart

Bart:

And to think I was going to tell you my story about an abscessed tooth I once had! Hee, hee, hee. You are truly something else, and I so look forward to reading your posts. For an "Old guy," you sure have the spirit and attitude much greater than any "Young guy" I've dealt with. Keep on posting and a big hug from a "C" friend.

julieann

Hi Julieann,

Thanks for the very lovely compliments. Unfortunately, you have incurred a bill for the new hat I'm going to have to buy, since you've caused my head to swell right out of the one I've been wearing! And here's a big Grateful hug to you, from another of your "C" friends!

As you might guess, part of my attitude comes from my experience getting shot and recovering. I went back to the states via the military MedEvac system, and spent 22 days in that system. Believe me, surrounded by young kids still in their late teens who have been shot, blown up by high explosives or fallen into a pit full of sharpened stakes, smeared with human feces, and impaled on those stakes makes it pretty hard to feel sorry for one's self.

But I'm really grateful for the experience, and believe me, those 22 days were very rich in that commodity.

Some of those were pretty funny, if you keep your sense of humor, and some were unspeakably horrible. Here's a example of each.

After 9 days on the critical list in the ICU in Pleiku, my fever had dropped to 105, and I was deemed well enough to proceed on the evac route. The next day, several of us were loaded (on litters) into the back of an army 3/4 ton field ambulance, taken to the air field and flown to Quinhon, on the coast, to await the arrival of the bird to take us on to the Clark AFB in Phillipines.

We had to RON in the field hospital in Quinhon that night, and as they unloaded us and brought us into a holding ward (Quonset hut ward) and put me into bed; I noticed that there was a window directly across from my bed and I could see the perimenter chain-link fence just outside, with jungle beyond.

I didn't think much about that, until a guy in hospital PJs and Robe came in on crutches, with what looked like a (large) fresh bandage wrapping around his calf. There was a corpsman nearby, and I asked him what the story on this guy was.

The corpsman responded, "Oh, that's LT smith, the Nurse assigned to this ward." We have a sniper in the area, and he shot the LT shot in the leg a hour ago as he was leaving for breakfast." Well, that was not as comforting to hear as you might imagine, and I promptly requested to be moved to a "No Sniping" bed.

The other side of that coin is not so deliciously humorous. Not at all.

The first night (of 10) I was in the hospital in the Phillipines, I was put in a room with just one other occupant, a young soldier who'd been evacuated directly there from the battle field. He's lost his right arm just above the elbow and his left just below the elbow. He'd also lost his right leg just below the knee and his left one, just above. He had third degree burns over 20% of his body; and he'd been shot through the larynx, so was unable to even call (or whisper) for help.

The pure, unadulterated suffering that poured from that young man's eyes was the hardest thing to bear one could imagine, and thank god they moved me into another, much larger room the next morning because I would surely have lost it completely if I stayed there, helpless to aid him in any way.

But when they put me in another room the next day, there were 9 soldiers there already, and all had colostomies (as I did, and for the same reason) and the atmosphere was more like a squad-bay (mil equivalent to a college dorm); lots of laughing, joking and just general grab-ass, with each of them trying hard to project the most "it ain't no big thang" attitude about their wounds.

You see, they had seen the alternative to being where we were, and they were damn glad to be where we were, and not in a body-bag somewhere. That realization has a remarkable way of improving one's attitude about one's condition, what ever it is. It was truly an honor to be amongst those brave young men; and the fact that we all knew was that not all of them were going to be around another year.

Perspective. It helps to keep it. Likewise, you sense of humor, which is indispensable for anyone who doesn't like suffering. Laughter is remarkably healing.

And I'm remarkably long winded. Sorry 'bout that .

I salute you Bart, for your service, and have my respect.

Hi, Bart,

I really enjoyed your stories: interesting, inspiring, and refreshing. You have a wonderful sense of humor, too. Thanks for sharing.

My best-
Anita

Bart, Hang tuff and keep up the Warrior mindset!!! Semper-Fi Bob

Hi Paul, Anita and Bob,

Paul, many thanks, amigo, and know that you and all the others here have MY respect, in turn!

And thank you for the very kind words, Anita. Maybe you could join up with the lovely Juliann and split the cost of that hat...

And Bob, thanks for the Semper-Fi! I love Uncle Sam's Misguided Children, and am very happy to meet one who is a 5-year survivor. I expect to be one too, to represent those fools who jump out of perfectly good airplanes.*

*In my dictionary, the entry for "Oxymoron" reads, "See perfectly good airplane."

Hey Bart welcome, there are a few here who've had multiple dances with C - Paul, and charm, and Christine, and Eric are all part of the multiple survivors group, though liver mets is a little more involved! Hopefully you stay clean this time. Hugs and again welcome... And I totally agree, overall health and physical activity plays a major role!!!

Thanks for the warm welcome, Cheryld! And the Hugs and good wishes. Please allow me to reciprocate and give you my hugs and best wishes for a permanently clean future for you, as well.

And for that matter, I wish the same for everyone on this list!

hey bart, I want to let you know that you are in the right place. people here are truly amazing in their constitution. I hope to hear more from you. hopefully good news. Welcome,
Shawn U.

Hi Sunderwood1111, thanks for the warm words, and I agree that this is an amazing place, filled to the gunnels with amazing survivors!

My next PET scan is tomorrow, a sort of mid-course check (after 4, 3-week cycles of Xeloda pills at 2500 mg/day.) Today is the first day of my off-week (no more pills this cycle.) I'll post the outcome of the PET when I get the news Wednesday.

Hey Bart:
I really liked that "don't attach to outcomes stuff". Maybe I've been doing that already and just didn't know what to call it.

Interesting reading. Maybe I'll tell a couple of B-52 stories sometimes.

take care

Hi, N74g,

I'm glad to hear that you get it; it makes life infinitely better when one learns to do that. So does being in shape when you have to go through an experience like this, and more importantly, keeping in shape while undergoing treatment(s).

I'm currently in the midst of my 4th go-round, my third recurrence. I'm actually incurable, but manageable. At least, that's been the pattern to this point, but things are changing. Well, that's life. Literally. The only constant in life is change.

A bit over 12 weeks ago we started this round. The PET scan I got on Tuesday, the first, revealed that the chemo drug that was successful on the third round is no longer working. I still have the tumors that were detected then and there has been no shrinkage this time. In addition, a bunch of new tumors were present.

Now, this may be counter-intuitive, but that's good news. All three recurrences have been in the liver, and not the lungs which is the more usual case. What is especially nice about this is that A) the liver is easy to access for out-patient procedures, and B) it's the most durable and forgiving organ in the body, and allows for procedures that would be too toxic for the lungs.

I have an appointment with a clinic in Pensacola on next Wednesday for an initial consultation, following which I'll be scheduled for a procedure that implants radioactive beads in each of the tumors and no chemo will be involved.

That, my friends, is major good news to my ears; I've been taking one form or another of chemo almost continuously since mid-'11, with only two 90-day intermissions (chemo knocks the tumors down, and when they are gone, there's a 90 day break followed by a PET. In my case, that has meant starting the chemo again because new tumors have always been present at the follow-up PET.

So, I'm pumped! I've been faithfully working out all through these last two years, and it's a bitch when you've got a system full of chemo. The fatigue is the only thing that I've noticed, but as I said, it's a bitch working out when you are already wiped out. Not having to deal with that will be a huge improvement.

And here's how "not attaching to outcomes" fits in here. I had a visit from a guy I shared the same home room with in the 9th grade, in San Antonio (where he and his wife live today). He left Monday, but he asked me what I expected to hear from my Oncologist. I told him the truth, which was that there were three possible outcomes; 1) The Xeloda was working, and I might be done for a while, or I might need several more cycles to finish knocking the tumors down; 2)the tumors were already gone, and I'd be free for the next 90 days; or 3) new tumors would indicate that the Xeloda was not working and we'd have to look at something else.

As you know if you've gotten this far, #3 was the winner. Since I had no expectations, there was nothing to disappoint or surprise me unpleasantly and I remain a happy camper!

And BTW, they are reporting a very high rate of success with this bead business, and it may be repeatable when the tumors reappear down the road.

"May." No expectations, no disappointments.

Bart

Bart:

I suspect there's another phrase that applies to you...

...comfortable in his own skin.

I heard that for the first time maybe 10 years ago and it was as profound as your "don't attach to outcomes". It's amazing how many people are not "comfortable" and don't even understand what it means.

And then, out of the blue, having lunch with a new friend, and they say it. It gave me pause, for just a second, happy to know someone else who gets it.

You take care Bart.

P.S. My sister was stationed at Pensacola when in the Navy. She said standing at her kitchen sink she could watch the Blue Angels practice.

n74tg,

You are very kind, and I appreciate it. Thanks.

That's a fair assessment, I am indeed, comfortable "in my own skin," and you sir, are a very observant man. I like that.

I've got a house that I'm currently selling over in West Pensacola, on the "dirt side" of the road that runs along the north shore of the first branch of Bayou Chico, and like your sister, we (everyone along the street) were always able to watch the practices of the Blue Angels. Pensacola NAS (Naval Air Station) is only about 2 miles from the house, as the crow flies.

It's a great little town, population of the city is ~50K, big enough to have a few amenities, small enough to have no serious traffic congestion and human scale architecture with a wealth of very interesting history behind it, back to the mid-1500's and the Spanish. I've been around, and this is a great place to live!

OTOH, my wife says that I would be perfectly happy living under a bridge, and she's right.

Hi Folks,

Here's an update with my situation. As my signature shows, late in June this year I had a PET scan that revealed that my third recurrence had arrived, right on time.

This go-round, we decided that since the Xeloda (pill-form Chemo,) which had worked so well on the last batch of tumors, we'd use it for this batch also.

Oooops...

I just had my mid-course PET scan on Monday and on Tuesday, my MO informed me that said Xeloda, which had eliminated the tumors in the second recurrence, was not working this time. All the tumors are still in the liver, all have grown some, and there are newcomers to the party.

So, we decided to go another route.

Wednesday, I had an initial consultation with a new kind of radiologist who is going to enter the femoral artery through my groin and implant a bunch of radioactive beads directly into the liver. Well, actually into one lobe of the liver, 6 days later, he'll repeat the process and hit the other lobe.

Yesterday, I had a CAT scan with Iodine marker. I always enjoy those, seriously! They give you a very warm feeling, somewhat like the spreading glow you get when you drink a hot toddy on a very cold day! The purpose of this was to map the distribution of blood vessels in the area; which I am under the impression will be used to guide the gizmo that implants the beads.

Pretty cool stuff, even better if I can persuade them to shrink a submarine down and hit those tumors with miniature torpedos.

Oh wait, scratch that, I just realized that I'm just geezin'... again.

All kidding aside, since this procedure is repeatable, I'm quite pleased. I'll be positively tickled if it works as well as advertised (they tell me this has a very high success rate with very few reported side-effects, and I can definitely dig that!) Since I know that we'll be doing this dance until more tumors show up than can be managed this way, having an effective management tool that can be re-used is comforting.

So is a good stiff drink, and now that that subject has been broached, and I hav nothing further to report, I believe that I shall test that thesis without further ado.

Prosit!

Hello Bart:

Sorry it took so long to respond to yesterday's good news. I read your post late afternoon, but was running late to Friday night swing dance club get together. You would probably enjoy the oldies, all good swing dance tunes and a happy group of people who love to dance. We had 106 people last night, down from the usual 160 (our biggest crowd ever 250). I think there is an early Arkansas Razorback football game today they have to get up early and drive to (sorry, ended sentence with participle, bad grammar).

Enough about them, this thread is about you. I like that radiation beads treatment idea, reminds me of what they use in prostrate cancer treatment. That they can put rad source right next to tumor seems to really be the way to go, max dosage to tumor, minimum to everything else. While I like the idea for oral cancer, it seems having to maybe go in through a carotid might have more risks than reward. I suppose I have the same worry about going in through the femoral. Oh well, sometimes risk has to be taken.

"salud, dinero, amour y tiempo para gustarlo" (to health, wealth and love and the time to enjoy them).

Have a great weekend Bart.
Tony

Good luck!!!

Hi Bart, I feel for you and all that you have lived. I'd be curious to know what kind of character you have. You are positively amazing!
Thank you for sharing, Sophie

Bart, I loved reading your posts. I'm actually printing out your intro to show it to my Dad. He's getting frustrated that the cancer is eating away at his palate & is very depressed, doesn't want to do anything! I just want to show him how he can still be active, be positive and never give up hope! I told him I would fight with him until the last minute and he needs to fight right along with me. Thank you for your sharing your story, it definitely is an inspiration! Good luck & let us know how the beads worked!

HI Connie, and thanks for the kind words. Don't be surprised with you get a bill from my haberdasher though, I'm having to replace my hat because you made it swell too much!

Suggest to your dad that no matter what life takes from us as payment for hang around this planet, it always leaves us something we can use and adapt to make up for the loss (or enough of it, anyway).

When I got shot, I lost the use of my right leg below the knee due to a bullet through the right sciatic nerve.

At first, because I was young and inexperienced with dealing with adversity, I was devastated! As a person who loves driving for its own sake, loss of the use of my right ankle seemed like a crushing blow because not only is the right foot used to work the throttle (gas pedal), it's also used to operate the brake!

Having no control over my right foot (and very little sensation from it as feed-back as to where the foot was), I was well and truly bummed out! I'd spent a great deal of time learning to perform and master the "Heel and toe" technique used to simultaneously apply and modulate the brakes, while doing the same with the throttle. This allowed "Double-clutch" downshifting while applying the brakes going into a tight corner at speed.

Hell, I thought it meant that my days of even operating a manual transmission were over, and I'd be forever doomed to driving "Slush-boxes," vehicles with automatic transmissions. No fun in that, eh?

Well, the truth is that I still haven't learned to "heel and toe" again, but I did quickly learn that I could plant my right heel against the floor as a pivot point, and with my foot on the accelerator peed,l push forward with my thigh to add throttle, and pull in back the same way to back off the throttle.

I do have to lift my entire leg and simultaneously move it (from the hip) and lower it to the brake and press down with the thigh. Woot!

However, I was also an avid motorcyclist and had cut my teeth on european hardware where the brake is operated with the left foot and the shift lever with the right. Years of riding had ingrained this pattern into my brain.

When I returned from Vietnam (several years after being shot there) I purchased a used Honda CB750, the first of the Japanese multi's. Guess what? Japanese motorcycles have the shift and brake on the opposite sides!

If you don't think that re-learning to ride with one leg that hardly works, is sufficiently challenging, just imagine trying to do this in San Francisco, where every stop is on a hill.

It was a fun adventure for two weeks, before I decided that I could manage the open road, and left to spend the next 6 months doing just that, living off the back of my scooter!

Never fret about what is gone, that's history. Focus on what's left, and adapt. Before long, your adaptation will become second nature and you won't give it a thought, unless you need to encourage someone else!

Good luck to you both!

Bart

Hi all, rather than start a new thread, I'm posting my latest sitrep here.

First, the SIRIspheres seem to have done the job; when I had my PET followup however, we found that a lone lymph node (I wonder if that would make a good title for a TV show... but I digress) which had shown "hot" at the time we discovered that the Xeloda was no longer working, had grown from .2cm to nearly 4 cm, and decided to eliminate that with focused beam radiation.

This node is about mid-way between the lower left of the liver and the stomach. The nausea is not as bad as the first go-round as there's no Cisplatin involved, but being in the middle of all the digestive appratus, it'll do until the real thing comes along (no, that's not a request for the "real thing".)

In a couple of hours, I'll drive in to Pensacola for my 10th (of 14) zapping.

Warm regards to all,

Bart

Bart, what an amazing spirit you bring to this bruising adventure. I'm so glad they have options for you.... And so grateful that even as you go through all this, you come to this Forum and offer your kindness and support to so many others. Thank you!

(((HUGS)))

Lynn

Lynn, thank you so much for the (((HUGS)))! And not to mention, the kind words!

Hugs are the Bomb when you're healing/surviving!!!

Good luck on you upcoming PET rescan!

Bart

Hi Bart, I'm Linda ... I just read a reply you wrote including a soldiers survival...I loved it, I two was shot through the chest ,both lungs and out the left arm, then I went from being a cancer survivor to recurrent, made it through again and then my hubby passed...and the damn thing came back.... I try to be at peace and adapt. And I'm usually pretty good about most of it.
Long story short, I enjoyed and believe what you wrote in your post, thank you

Hi Linda Lucinda,

First, I have to thank you for the lovely message, and then comment on what a lovely name Lucinda is! I have a document that is sort of an annotated family history dating to The Virginia Colony in the 1660s, and it was a favorite name for members of my family line for at least a couple of centuries!

I'm impressed that you survived your chest wounds. I survived a flail chest in my last year in the army, one year before getting shot. My right lung was shredded by broken rib-ends (the car I'd been riding in was bouncing around with some definite enthusiasm) but I was fortunately unconscious at the time.

Please accept my sincere condolences on the death of your husband. You, Linda Lucinda, are one tough cookie and I salute you!

Welcome to the "Recurrence Club." I'm awaiting word from my medical team as to when I can start my next three weeks of rads to Zap my recently discovered 6th recurrence. This one is just a single "hot" lymph node, up on the outside of my esophogaus near the top of the stomach.

At or about the same time as we discovered that, we found (from the last CT w/contrast) and verified via ordinary Xray, that my colon was obstructing. I'm quite sure that this is a result of one of the repaired bullet holes adhering to the opposite intestinal wall (I get colonoscopies every 3 years, and they always find some that have to be pried apart to proceed up-stream.

And just to make things interesting; (old chinese curse, "May you live in interesting times") four weeks ago today, I developed a lingual hernia which had to be repaired first (we did that Monday.)

Wed, I had a consult with the GI walla who had done my colonoscopies since '02, but he doesn't have an opening until July 23, so I've emailed my med team and asked to get the rads started ASAP.

I've been pretty busy lately, never a dull moment, eh?