Well, so after 12 years out of treatment for tongue cancer, seems I'm heading back again. Sort of writing this to vent a bit I guess.

A little bit of history, if you check out my profile and posts you'll see some of it, was diagnosed late 2002 with squamous cell carcinoma on left side of my tongue, had that removed along with neck dissection, followed by chemo/rad. Early 2003 PET CT found it had spread to right side neck lymph nodes, another neck dissection, chemo/rad. All done in Hong Kong while I was living in south China.

Since then, a few adventures along the way, but after I got over the side effects of the chemo/rad x2 felt pretty good. Moved around a bit, China, to US, back to China, to Puerto Rico, East TN, Saint Louis, now living in California, about 30 miles north of Santa Barbara for the past year and a half.

Last March, started with a new dentist, and set of doctors, Dentist wanted me to see oral surgeon, just because, so I had a good exam by him, all seemed ok. He referred me to an ENT, just because, full exam by ENT, all seemed ok. Fast forward to a couple months ago, getting extra sensitive to spicy foods, etc. A few small white spots that would come and go causing some pain, but not anything obvious.. Made appt with GP, finally got into him last week, he sees white spots wants me checked by ENT. ENT (same office as before but a different doc)takes a look, not happy with what he sees. Apparently a bit of a mass going on that you really have to look at to see what it is. (hey, after the surgery from last time, plus rad and various episodes of dry mouth my tongue doesn't look normal even when it IS normal)

So ENT isn't happy, with that, does biopsy. And today the news comes, yep is cancer again.

And the wife and I are devastated. Doc is worried that since I've already had surgery I don't have a lot of tongue to spare with this one, he's worried about quality of life issues, referring me to a doc at UCLA. Probably the surgery and free flap reconstruction, then we'll see about any radiation/chemo. I've got to dig out my records from the Hong Kong hospital so they know what's been done. That stack of records is about an inch thick.

Trying to keep a positive attitude about it, the "gonna kick it's a** again" attitude, but this time sort of tough. Doc is in the process of scheduling a PET/CT, followed by an MRI, I guess see where it goes from there.

So, thanks for letting me vent, will keep all posted. Writing about this stuff tends to be good therapy for me.

Doggone it, Bob. I've been thinking of you often. Susan even asks if I ever hear anything from you. This just stinks. I hate that you are having to go through this again.

Dare I say that it is good to hear from you, given these circumstances?

You've been there before and my wish is that you get through this quickły with the best possible outcome.

Im so sorry you are facing a recurrence after so many years!

Wishing you all the very best with everything!

Hi Bob,

Sorry you are back as a patient not a visitor. 14 years is a long time so there are likely newer insights and techniques for treating your cancer. I suspect options like proton therapy were not available back then and you have one quite close. UCLA is the best so that's a big plus.

You know the drill so nothing to add there. Welcome back does not fit but glad you are back. humm... that don't work either.

I struggle when they start to talk about "quality of life issues". Like you haven't had to adjust and do what you had to do for the last 12 years. Get rid of the dang cancer - apply some of the newer treatment options (radiation seeds perhaps?) and let you adjust and move on with your life. I think sometimes doctors do not give patients enough credit for being able to accept altered life situations. I know of someone from the Board who no longer posts - she has gone on to live her life - but she had a full glossectomy, found a way to take food orally and went back to work and her life. Hugs as you go through this - know we are with you.

Donna

I have to admit, it sucks and is totally scary too. I am sorry you are going through this again after such a long time. It's good they found it early - ish. Hopefully there isn't much spread, and as others have said... things are newer this time out hopefully it will be a little easier. hugs.

Thanks for all the support, just heard back about starting the tests. No word on when they'll do the PET/CT, I guess they're still scheduling that one, but the MRI isn't until Dec 9th. Seems a bit of a long time away for me, surgery won't happen until afterward, doc from UCLA want's the MRI to see what soft tissue has been involved.

Last time I did this things went pretty quick, but again, that was in another part of the world. First time for me in the U.S. healthcare system in recent years, not sure if this sort of wait time is normal.

Hello. Yes a recurrence after such a time period is indeed very frightening. I guess this is technically a new cancer rather than a recurrence.
The time period to PET sounds too long. Surely with insurance this can be done tomorrow? I'm sure others in the USA can comment further.
Quality of life issues? What do the docs know about this?
When Kris had his recurrence we were told his only option of life was the Total Glossectomy and Total Laryngectomy. Has it altered life? Of course it has. Would we rather he had died. Hell no.
Despite "QOL" issues , life is still great. Kris enjoys a very good life. We have just had a months holiday in Asia. He has no need of a PEG. He keeps our 3 acre garden looking good and is turning into a not too bad "House Husband".
Hope all turns out just as well for you.
Tammy

Sorry for your cancer diagnosis, none which make things feel any easier, maybe worse sometimes the 2nd or 3rd time around. I've been through 7, if that helps with any positive outlook for outcome. In fact, they say the longer between cancers proves to be more sucessful than one recurring in a short time. The MRI does sound somewhat longer than anticipated. I don't know if it's in the hospital or an outside facility, but maybe one can be scheduled earlier by contacting the radiology department or center directly, unless it's going to interfere with some other testing. After that, it can be hurry up and wait, depending on how busy the hospital is, and popular doctors may be out of town doing presentations, doing surgeries, meeting patients.

Good luck with everything.

This is just so not right! I am so sorry to hear that you have to face this again. They have advanced a bit in 12 years, lets hope and pray that the technology will make this pass without too much suffering. So is it SCC again or adenocarcinoma from the radiation? I'm booking an appt. with my H&N surgeon for an exam.

Hi Gary, SCC again I suspect, other than that I feel pretty good.

PET/CT scheduled Tuesday, so that's good, MRI I guess I'll have to hunt a place to see if there's one free earlier. Not an insurance issue, more a machine availability issue from what I gather. Guess this is one of the few machines between LA and SF, so booked pretty solid. Haven't really gotten a good reason for the long lead time on the MRI.

At this point just want to know where we stand on all this, how bad, etc.

Ok, time for an update. Did the PET/CT last week, results were good as far as there was no spread, cancer localized to the surface of the tongue according to the scan.

Did the MRI today, just the head, so the surgeons can see how much and where they need to operate. Going to see the Head and Neck guy at UCLA next week, hopefully can get on a track to get this done before Christmas.

My ENT up here in Santa Barbara says for sure they will be doing free flap reconstruction, been reading up on that, I get the concept, had that on the first go around, except it didn't take. Not exactly sure they did all that good a job on it to tell the truth.

Trying to stay positive but wondering what the recovery time is with the free flap, what's involved, etc. I suspect techniques and such have changed in the last 12 years, as well as just differences in treatment from country to country.

Taking this one day at a time, trying to gain weight but finding that almost impossible, doing protein shakes, as big a meal as I can get down, which sometimes isn't that much.

Geez, let's get this done already.

Maybe you might want to try some weight gainer protein powder. It sounds like things are rolling along.

Have you tried drinking fortified milk? Put in four tablespoons of skim milk powder for every cup of whole milk. Blend it and keep it in the fridge. This raises the caloric content to 265. It adds protein but not fat. You can use the milk in soups and anything else that you add milk to.

I was originally from Hong Kong. Which hospital were you treated at, Hong Kong Sanatorium?

All the best to you.

The recovery from the flap is pretty good. Assuming everything goes okay. The ENT usually does the removal and at my hospital a plastics guy does the graft. Mine did a great job. I was eating and drinking fine by week three (with a little maneuvering. I placed the food on my good side washed it back with water or almond milk). Mind you the first few days after surgery I looked horrendous and was all full of staples, stitches, bandages, etc...

had a trache, NG tube, catheter, and IV. Graft site and two donor sites.

Lost the trache day three, IV day 2, catheter day 1, and NG was removed day two and put back in day 4 (I demanded they remove it, it was wrapped around my trache on the inside)

went home day 10.

hugs.

[quote=JetAgeHobo]Taking this one day at a time, trying to gain weight but finding that almost impossible, doing protein shakes, as big a meal as I can get down, which sometimes isn't that much. [/quote]

Try Christine's crazy one billion calorie milkshake, or something simliar. Of course this means your diet is very high in sugar and fat - it's not ideal, but you need the calories. As long as you're still getting some protein (adding the protein powder really does help), hopefully you can prevent significant muscle loss. I lived on these milkshakes for a few months and went through a whole bunch of cocoa, peanut butter, ice cream, full fat milk and protein powder.

Edit: Here's a link to Christine's recipe. I made similar milkshakes but usually bought vanilla ice cream so I could change it up. Added things like frozen cherries, a can of coconut milk, dry malt extract, etc,

Sorry to welcome you back, but glad you remembered OCF.

Remember how important it is to manage the wait times. There are many wait times to come, and being calm about the next wait time is the key. As long as you know what you're waiting for and how long it will be, there's no point thinking too far beyond that. Easy to say I know, but if the situation was reversed you'd probably be reminding me of the same thing.

Venting is always welcome here. Hope to hear an update as things progress.

I've become sort of addicted to Christine's milkshakes so that seven months after treatment I'm putting on too much weight! They got me through the tough times and the dietician at the hospital said I was a legend for losing only a few kilos during surgery and radiation.

I've had the forearm free flap twice, once on my tongue and four years later for my cheek and gum. The tongue op was bigger and I have to admit that the first 8 days were hard. After Day 8 my progress was rapid and after both surgeries I was going for long walks again after two or three weeks. I am one of those people who have bad hallucinations with morphine so for my 2nd big op I was better prepared and had Fentanyl instead. It made a big difference.

The donor and graft sites heal up well and while that might take several weeks it doesn't affect daily living.

It would pay to ask about tracheotomies before you have the surgery and read up on them. I went into my first surgery in a state of ignorance and got used to the trache just before it was removed.

Hope you get your date for surgery soon.

Cheers
Maureen

Thanks for the info all. First consult with the surgeon at UCLA is Thursday, hopefully more information then, but who knows. Weight loss is an issue, I started on thyroid medicine about 3 months ago, and when it kicked in fully I started loosing weight. Have to eat a LOT to keep it on, more than I'm comfortable eating even without the tongue CA. Kind of like belly up to the Golden Corral buffet and stuff myself type of eating to keep the weight on.

Still feel pretty strong though, problem is keeping the energy level up.

May have to try Christine's milkshakes, although my wife's a health food nut, or a fan of real healthy eating. Low fat and she believes tumors feed on sugar, so no sugar/candy for me. Probably will be making a trip to the dietician at the local cancer center to get this sorted, need a 'referee' as far as the food bit goes.

And so it goes, one day at a time.

I like your wife... ;o)

So after a 3 plus hour drive to the med center, another hour wait, finally get to the doc. Since UCLA is a teaching hospital, got examined by the resident, then the head head doc who will be doing the surgery. While they're encouraging in that the cancer is local to the tongue, not so much on how much surgery, recuperation etc.

Will definitely be on a G tube, and trach tube, he thinks both will likely be permanent. Wants me to have a splint made in case he has to split the jaw. I can't say he was the greatest at explaining exactly what was going on, sort if was pushing it off to the reconstructive surgeon, who I see next Tuesday.

Not sure if this guy was painting a worst case scenario as far as surgery and recovery or what. I'll ask next Tuesday exactly what this guy plans on doing. The pre-op testing instructions he sent to my GP mention near total glossectomy, G Tube, Trach Tube, neck dissections right and left, free flap reconstruction, and something about direct laryngoscopy. Think the neck dissections might be to retrieve nerves for the free flap reconstruction, there were no nodes involved according to the PET/CT.

About a 10 hour procedure according to the scheduling person, figuring 10 days to 2 weeks in the hospital.

My wife and myself are pretty down about this, not exactly expecting the "permanent" nature of the G tube and Trach, or weren't prepared for it. At this point I'm not worried about diet restrictions, guess I have about a week to eat my "last meals" as it were. Steak, Pizza, White Castle Cheeseburgers. I can thing of a bunch of stuff.....

This crap sucks.

And so the journey begins...

It does suck and I hate seeing you go through this. Eat up.

Sorry to hear the news. It must be very hard to absorb but it is good that there are options available. Good luck.

Fingers crossed and prayers said your surgery goes well and their worse case scenarios prove wrong. Hugs

Best wishes. Hope things go better than expected.

Ok, back home from the surgery, which was on Dec 15th. Long 11 hour surgery at Ronald Reagan UCLA Medical Center. Wife said the reconstructive surgeon looked like he went through the wringer when he spoke with her after the surgery.

Docs said they removed all the cancer, was able to save back of tongue and part of the left side of tongue, find enough veins and arteries on the right side of my neck where I had previous radiation. Took a big chunk of hide out of my leg, scar runs from my hip bone to my knee. Gonna look sweet in cycling shorts in a few months.
Did the free flap reconstruction, seems to be going will, except I"m not exactly sure how this will work out since it seems my tongue is attached to the floor of my mouth. Speech is difficult at best. Usual assortment of drain tubes, G tube and trachea tube. Trache tube was remove total yesterday, as well as all the drain tubes and stitches/staples. Basically liquid canned food, normal meds. and antibiotic at this point.

Main issue now is all that scuzzy secretion stage, how long does that last? And of course no energy, if my 83 year old mom and I had a race, she'd win. Puttering around the apartment last night in between trying to sleep, felt about 85 years old. Nursing staff at the hospital said I didn't look 59, looked much younger, but I think they're trained to say that.

Next stage is just to get better, heal up and see what happens.

Have a question, do patients having gone through what we've been through eventually return to work, or do they just take long term disability and be done with it?

Not all OC patients are able to return to their original positions. For me, my job was very technical and required perfect enunciation which I was not able to do. After my third round of OC, I returned back to work only to be fortunate enough to take a buy out and leave permanently. I have a couple friends who have had 3 or more rounds of OC and they all have their issues (one had a total glossectomy and cant speak) but they continue to do their jobs. Those people somehow have managed to overcome their limitations and have continued to work. I guess what Im saying is its on a very individual case by case basis if an OC patient will be physically able to work after everything they endure.

Best wishes with your continued recovery.

Gosh, it's early days yet. After my first big tongue surgery I couldn't have written a post like that 8 or 9 days after it.

Do you still have the NG tube in for feeding? Great that the trache is out and sounds as if surgery went well. My tongue is partly tethered to the floor of my mouth too but my loud teacher's voice still bellows out. I really don't know how I can still talk so well.I think you can learn to speak from deeper down and use the tongue less ... although of course the tongue is needed for those tricky consonants.

Love what your wife said about the reconstructive surgeon. As a patient I see the surgeons when I'm in intensive care after surgery and through the daze of anaesthesia I hear a sort of "surgeon's high". They've been through hours of intricate work and the patient has come out fine on the other side. It never occurred to me that they might be totally exhausted.

I went back to part time teaching about a year after my partial glossectomy. Not as big a surgery as you've had and talking for a living WAS hard. Right now at 68 and after another cancer I'm retired.

I'm sure you'll feel more like 59 in due course:)

It is early days so concentrate on healing. Since you are into fitness, put your energy on getting out for walks, short rides, etc. It will come back to where it is going to come to back to. You can only assist along the way but every one of us ends up someplace that is not dictated by our wishes but rather the combination of the disease and the treatment and your own body.

Being active and fit helps a lot so be thankful for that and you'll be on the go in no time!

First, Happy Holidays to all.

ChristineB, Yeah, not sure how things will work with my current job, it had gotten pretty stressfull the months before I was-re-diagnosed. I'm a footwear engineer by trade, and our department was very short handed, funding there for more engineers but HR and department manager not exactly making it a priority to hire any help. Was actualy interviewing with another company when I was diangosed, had to cut off the process. Long story worthy of any Dilbert cartoon basically. So I'm not exactly in any rush to get back to that meat grinder any time soon. In all truthfullness what with disability insurance and SSI I'd be doing ok income wise. Job does require a fair amount of talking, verbal communicatin, plus some oveseas travel. Lets just say jury is still out, some departmental changes going on. Too early to tell on many fronts what will transpire. I've also beeen contacted to do some freelance work for another company, In this case there may be too many options.

donfoo, yes, getting out for some walks, left leg a bit sore what with all the materrrrial they took out for the reconstruction, but they've also set up a PT to come out, willl work with her/him on rehab. Hospital sent me home with a walker, don't really need iit, but they insisted. Luckily there's an elevator to my second floor apartment, so no big deal for access.

On the recovery front, still dealing with mucus, a little better each day but still annoying. Still stiff bones and joints. Tounge I think is healing ok, a couple of painful twinges here and there. but generally ok I think.

And so it goes.

Your tongue may become a bit more mobile once it has healed and the swelling has subsided. I know some People have their tongue tethered to the floor of their mouth and later have it loosened so I woudk wait hpgreat through this heal and then if you feel the need broach the subject with your surgeon. Best of luck and be patient... Takes time,,,

Thanks Cheryl. At this point realy I'm taking it day by day, see one part of the surgical team on teh 9th,. the other on the 13th. See how I"m progressing and such. I think for now I've "plateaued" in that its just waiting for the various wounds to heal, sterri strips to fall off, bruises to heal, get some strength back, get my wits back about me. quit spitting up gunk, all that fun stuff.

Try and get out for walks in our small town every day, get the strength built back up on the leg they took the flap from. Lots of benches can stop and rest.

So it's now about 3 weeks out from surgery, and I kind of feel only small improvement from 2 weeks out. Less "gunk" but still tons of saliva, I guess maybe because I'm not swallowing it I"m having to spit/suction. Still trying to sort out this feeding schedule, every three hours isn't fun when it gets to the midnight and 3 am feeding. What I do (or try to do) is one feeding when I wake up about 2 or so, then do an can and a half at 6 and noon. Seems I'm getting some stomach acid feedback if I do too much in the G tube at once, so having to watch that. Weight has been maintaining, so that's good at least.

Steri-strips have all fallen off, so some progress there. Every once in a while I get a little blood from one point of the incision or other, sort of like surface blood clots coming off, nothing big deal.

Tongue, I guess swelling is going down, I can swallow, I'm just not making any attempts at swallowing anything until cleared to do so by the doc, I'd prefer a healthcare professional were within reach in case I run something down the wrong pipe. I do have to say one part of my tongue (original tongue) is bumping more against a molar than I would like right at a stitch line with the reconstructed tongue, I'm not too keen on that.

Speech is a mess., but people seem to be able to understand me, even on the phone. I did have an issue with UPS, trying to track a package and them not understanding the AWB... even tried a text to speech program on the iPad... Finally got a live person to talk to and they could understand enough to get it done.

Problem, I can't pronounce my family name.... but then again I couldn't pronounce it very well before 9AM and 2 cups of coffee before the surgery...

Getting out for walks, every day a little bit better. This cold snap we've had tending to keep me inside more than I'd like.

One thing I did notice is now when i'm riding in a car it seems too "overwhelming" for lack of a better term, visually things going by too fast. Also seem I don't have the same level of concentration I had previous. I'm chalking that up to side effects from an 11 hour surgery and not really getting a broad range of nutrients from the Nestle feeding formula. Bobby needs pizza and cheeseburgers.

And so it goes...

Sounds like things are going well. I would guess the tons of saliva are just mucus being dispatched to all the damaged mucus membrane for protection and beginning repair. Hang in there!

Yes, sounds as if you are progressing well. Love your sense of humour, often a saving grace for us all. I met a woman who couldn't pronounce her Christian name after surgery so told people different easier-to-say names when asked.

It's great that you can walk a little more each day. (Does it rain in California?)

Just a note re difficult names to understand. It happens to many of us even without surgery and with perfect pronunciation. My children and I always give a fake name when waiting for an order or reservation anyplace. We decided on "Thomas" because sometimes when we used different names, we would forget which name we used so when it was called out, we didn't recognize it. It saves having to spell it out. You could even say "Batman" and see if that gets you quicker service.

My family name is one of those "want to buy a vowel?" Hungarian names, lots of exra consonents, etc.

I usualliy give the name "Ski" when doing the restaurant thing. And, oddly enough, the majority of the time the hostess calls "SKY" - even though it's spelled SKI in the waitlist.

Of course they ask if that's correct, and I have to comment, when you put two boards on your feet and go down a snowy hill, are you going snow skying???

And so it goes...

First follow up visit with the H&N surgeon, this is the one that did the tumour removal, etc. Seemed pretty impressed with the fact my speach is at least somewhat understandable, considering he's classifying this as a 'near total glossectomy." I'm slowly getting the gory details of the surgery, geez, no wonder I've been sore in strange places. Also was impressed that I"m looking pretty good, getting around ok, didn't loose a lot of weight etc. And in general good shape for 3 weeks out of surgery.

He was able to save some of the base of the tongue, a little sliver of the left side, and the back of the tongue. The rest is free flap reconstruction. Healing going well, still a good amount of swelling, but all in all he seems to thing I'm doing very well. Called in a med student and the resident to also have a look and listen.

Have another follow up with the reconstructive surgeon next week (bit of a pain these follow up visits, down in Westwood section of LA, an I ilve up the coast about 120 miles, 3 hours each way with traffic). He'll order the swallow study and get that part going.

One wrinkle in all this, this was definately a new cancer, not a recurrence of the old one. Previousl was well differentiated squamous cell carcinoma, this is poorly differentiated etc. He's suggesting I see a radiaton oncologist to see if there's any possibilites to do radiation, however, since I've already had 2 go arounds he doesn't think it's possible. Doc also said in this case not much proof one way or another that having radiation would be benificial, or not having it would be detrimental.

Will see what comes of that, need to see my local H&N guy that I started with, get referred, etc. I'm inclined to skip the radiation this time around.

Otherwise, all the margins were clear, no spread to lymphatic system, etc.

Still 3 to 6 months out from returning to work I suspect. Did visit the office for a bit, on the way to the docs appointment, had breakfast with some work friends, chatted with my boss a bit, and went to a department "meet and greet" with the new senior VP's of course got to see the rest of the co-workers, etc. Was pretty knackered by the end of that 2 hours visit, for sure can't do a series of whole days. Not that I'm in a big hurry to go back anyway, Plan of the day for the next few weeks is rest, do some walks, some on line courses, etc. And re-learn how to eat. I'll be satisfied if I wind up being able to do soft food, drinks, near term.

And that's the update.

It sounds like you are doing very good, Bob! Great news.

I like reading the fighting spirit between the lines. Good job!

you are doing terrific. Do take his advice. I know a few people who've been radiated 4 or 5 times. So it is possible depending on location and amount you've already received. As for the new cancer idea... not necessarily. As cancer moves it can change - my tongue was well differentiated, my nodes were well to moderate. Hugs and best of luck, and the drive definitely sucks!!! ;(

And, here's an update, almost 2 months out of surgery. Talk about hitting a plateau.

Still having quite a bit of saliva, but now the new thing is thiker phlegm, kind of starts back of the throat,. buids unti I sort of combination cough a d hack it up. Thick dark brown goopy suff, sometimes fleks of blood. Couple nights ago actually a good sized blood clot. Dont' think it's coming from my lungs, not that deep of a cough. Isn't constant, comes and goes but when it starts I cough something up about every half hour. Very annoying. Got part of my throat huring a bit too. Jus5t saw the ENT at the beginning of the month, he looked inside the mouth and didn't see anything. See him agaian beginning of next months, will ask him to do the scope down the nose to check the back of the throat. How long does this saliva/mucous stage last anyway? Getting tired of this real quick makies sleeping difficult,

Stitches have healed up well finally, luckily the scar on my chin isn't real noticable, wear a goatee and you really can't see it. Of course I have to hit the beard with a little "Just for Men" to darken thte grey., My hair is stil mostly brown with just a little grey,, but my beard is total white. A llot of the swelling has gone down, but still swollen under right side of jaw, but that's starting to go down.

Saw radiation oncologist, his feeling is since I've already had radiation twice, the risk of additional radiation at this time was greater than the reward, did not reccomend radiation.

And off for the swallow study tomorrow, hopefully all goes well with that. a bit nervous, as my wife is not taking this good at all, and if I don't pass the swallow test she'll go ballistic.

And that's another problem,. my wife has been totally non-participating in my care since i got home. Basicaly feels like her life is ruined. Sort of acting like she'd rather either she went away until I was "healed up" or I went away, so she doesn't have to deal whith the sight and sound of my being sick. So, lets just say no support from her., other than pressure to "get better" Leads to depression on my part, not a good thing. And if I say anything about being depressed... well that starts a whole nother round of trouble.

So, lets just say I'm sick and tired of being sick and tired.

Is the phlegm the result of saliva not moving down into the esophagus? When John was not swallowing, that was a major problem. The saliva would collect at the bottom of the throat, thicken and he would have to cough it up.
Good luck on the swallowing test!

I'm sorry you don't have the support you should have. I can't imagine - my husband was supportive to the best of his ability - but I'm very independent - if I needed something he was there, but I didn't ask a lot other than to take care of the house to some degree (we were doing a major reno in the middle of my treatment). I'm hoping it's denial not insensitivity that's causing her behavior. Maybe realizing that this time it is more dire and there is the possibility of losing you. In order to deal with that idea some people have to distance themselves. Only you would know this for sure as you know her. I do have to say that it simply can't be good for you to feel the way you do. I would let her know how it makes you feel. Don't hide it, it only makes matters worse.

If she still doesn't get it, or is just seriously insensitive... well then I'd give her an earful - because frankly she deserves it. Plus ultimately it will make you feel a little better to get it off your chest.

Is there someone else around available to help you ?

hugs.

I agree with Cheryl. Tell her how you feel. I think she is in denial about the situation and is trying to protect herself from the whole issue. I get that. She sounds terrified about the whole process and prognosis and doesnt want to deal with it. Maybe she is scared of losing you. But , you do need to talk about this. Both of you do. I would expect a Spouse to be there and to be supportive. You need her to be your rock. Tell her that.
Thinking of you, Tammy

Bob, I have had that thick goo for 6 years now and it even chokes me when I sleep which shuts off breathing. It has been the hardest thing to manage, by far. I hack blood, sometimes by the mouthful, and have for 6 years. It worried me long ago but it's just life now.

My wife walked away from "the patient" about 5 years ago, but started withdrawing as soon as she heard the words, "No treatment, not reversable, no cure." I try to empathize but it is tough at times. Hopefully, this will be behind you soon. From our eyes, the world didn't really change. Seeing the angst and tears from those I know is a constant reminder that I have radically changed in appearance.

Hang in there, it may take some more time.

Best wishes always.

Sorry to hear that you have the phlegm/mucous problem. Something I haven't really experienced. Hope the surgeon can throw some light on it or give you some treatment when you see him.

I feel a tiny twinge of envy about the beard. My chin scar which was meant to be "barely perceptible" after a year has become a deep grove.

It's really hard without full support from a partner. I've had cancer 4 times and after the first biggie, my husband seemed to withdraw into himself. He was still there to do basic chores like drive me to treatment or make me a cup of tea, but he didn't take any interest in the medical detail and was sort of distant. I knew he wouldn't be able to cope with it.

Don't let depression get hold of you. Tell the doctor. You seem to be doing well overall.

I wish you well!!!

JetAgeHobo, do you by chance remember 10 years or so ago and I used to tell people to imagine Crystal Gayle singing "Don't it make your brown goo clear?"

The goo traps dead tissue, bacteria and fungus and carries it out. When it is brown, it is because it has sloughed mucus membrane. Once that resolves, it will turn clear and may slow down. It is the body's defense to protect the mucus membrane.

You are in recovery and on the mends. The phlegm thing will get sorted, one way or another. Please seek support from the local cancer support network. Ask your oncologist for support groups. You may have to travel a bit from where you are to SB but the it would be really worthwhile for you.

Also, do not let the depression take hold. You can get some meds and therapy for that now. The drought is a great thing as there are many nice warm and dry days. Get out and get on a walking trail or even a stroll downtown. Don't let yourself get cooped up. Your mental health need care as much as your physical health. Don

Thanks for the thoughts. Had a talk with my wife a couple nights ago, basically told her yeah, I understand how she feels about wishing things would get back to normal and such. She's also going through a bit of a cultural thing, all her friends back in China have families, a couple of houses, successful and such and again we're living a bit day to day. Don't know if any of you have caught the new TV sitcom "Fresh Off the Boat," but the wife in the sitcom could be my wife, easy. Anyway, told her yeah, it's OK to feel bad, but NOT OK to make me feel like Sh**t about it.Last night my wife seemed more apologetic, realized to not take it out on me, see how long that lasts before another meltdown. We have mutual friends at work (she was working as my assistant in the company we work at, we really are one of those unusual couples that can work closely together) she may have talked to them about it and got a verbal butt kicking from them also. Have appointments set up with nutritionist next week, later medical oncologist, the ENT at UCLA, and soon hopefully a speech pathologist.

And what didn't help matters was the swallow study on Tuesday. Not sure what I expected, maybe pass with flying colors and be told it was OK to go out and eat whatever, but that wasn't the case. Started out with a small amount of thin barium liquid, did OK. Then about a tablespoon, doc wanted me to drink all at once, did better with that, I guess good enough to graduate to a paper cup. I guess doc wanted me to be able to drink the paper cup's worth, sort of tilt up and glug, glug, glug. That wasn't going to happen for sure. Or maybe I was trying to rush it, but didn't work out. Don't think I aspirated anything, but it didn't feel right. Doc showed me the maneuver to help keep the liquid from going down the wrong pipe, not sure what it's called, it did help. Anyway, we stopped there, he's referring me to yet another ENT at UCLA, this one specializes in swallowing disorders. Ok to drink thin liquids, in the meantime see this other ENT and see what he says.

We were a bit disappointment, but I'm like this is the same as maybe having your leg amputated and getting a prosthetic leg, and having to learn to walk all over again. Basically an artificial tongue, need to learn how to eat with it all over again.

And so it goes, stamina is still not there, about 40% maybe. Frustrating, I was pretty active for my age before this, cycling maybe 70 miles a week, etc. Not been on a bike since the surgery. Have been making sure I walk at least a mile a day, unlike the rest of the country we're experiencing temps in the high 70's low 80's. Getting out side is imperative around here.

And so it goes. Doc has set my tentative back to work date mid June, I thought I could push it up to mid April. Not so sure about that now, see how it goes though.

Sounds like things are improving on the home front. Don't get too impatient. Things will happen as fast as you hope and push, but be cautious if possible.

In the past 4 years I went from bedridden to 50 miles a week on the bike to thoracic paraplegia in a motorized wheelchair to 90 miles a week on the bike. 2 years ago I had no swallow and no digestion and too ill for a feeding tube or laryngectomy for breathing. I slept with a ventilator for months. I still have to use manual override to breathe, often. I aspirate most things I eat and live with pneumonia during the cold months.

I don't consider any of that as a limitation. My erratic voice and lack of back muscles that keep me from sitting up for very long are the biggest reasons I can't work, but I am still trying to find something to bring money in. It appears we may lose everything in the next year. Some things are just out of our control and we have to play the hand we're dealt.

JetAgeHobo, don't let the swallowing test get you down. It is likely that the next ENT would talk to you about a dilatation where they put in a "wire" and a balloon to open up your esophagus. The dilatation should help with swallowing. Very often, the dilatation has to be repeated as the esophagus may become narrow again in between dilatations. Sometimes doctors put in a stent to keep things open until everything is healed (apparently the esophagus is a bit of a bloody mess after a dilatation). You should be able to have a tea, or a coffee or even frozen yoghurt at this moment in time. This is not too bad. It is part of the new normal.

So another update on the saga of what ever the heck is going on with me.

Last post, was dealing with a lot of coughing, hacking up gunk etc., and I mean about every 30 minutes. Started to get some pain in the throat, so tried to take it easy, but this stuff seemed involuntary, and some times this hurt like heck. Tried to see what was going on nothing obvious that I could see. Eventually things changed, and not so painful.

Couple days later I look at the tongue/throat, can see a mass on the right side, just behind the back lower molar, except farther back. UH OH... Had appointment with ENT scheduled for the following Monday, so let it go. Seemed to get bigger, more easily seen. At this point I"m convinced this is a huge tumor, I mean looking the size of a cocktail wiener.

Get to the ENT, tell him what's going on. he takes a look and is like ok, looks like tumor has spread, come back. may need chemo etc. when do I see the oncologist, etc. To be sure lets put a scope on if for a close look and do a biopsy. I'm like ok. So he sprays the heck out of my throat., nose with the numbing agent, goes out of the office for a bit. Comes back in. and he's changed his mind, maybe not cancer, but necrosis of the free flap. Does the scope, says yes,. looks like necrosis of the free flap (basically this mass is black/grey) and go see the surgeon down in L.A. right away, this afternoon. I knew that wasn't going to happen, but told him ok since it seems like all of a sudden his shorts were on fire.

So, see the reconstructive surgeon that did the free flap on Tuesday. For sure there will be more surgery, how much and how extensive remains to be seen. Tongue itself looks great, but it's all getting pushed to one side because of this mass on my right side.

And just to through another kink in the deal, found a bump on my neck more toward the front. Lots of surgery went on there. still a lot of swelling. The whole area has taken on a nice purple hue.

Starting to get a handle on this mucous goo bit, seems just after I do a tube feeding now. Been taking two tylenol at bed time, then one about every 6 hours rest of the day seems to cut any pain and keeps the excess mucous under control. Having a hard time with blender food. stomach not dealing with that too well. Sticking to mostly formula.

And that's the story, one step forward and two steps back. arghh.

Sorry to hear about your ongoing challenges.

Jetagehobo, sorry about the complications. Hopefully your medical team will be able to resolve the problem. All the very best to you.

I'm wondering why you didn't go to LA right away when the "shorts on fire" doc told you to! I would be in a major panic. However, it sounds hopeful for you if they can fix the flap. You didn't need that problem but if they're onto it you could have a successful outcome.

Wishing you well!!!

Problem was, the surgeon he wanted me to see is in surgery all day Monday, and most of the day Tuesay. On top of that, wrong surgeon. Not exacly sure what's going to go on at this point, just looks like a big mass taking up space for now.

Guess I'll find out more on Tuesday,go from there. In the meantime trying to keep my wife and myself calm and in decent spirits.

So it's nearly Tuesday.Hope you get a plan of action. You sound like an extremely brave person but I know how hard all this is.

Had the doc's appointment yesterday. This is with the reconstructive surgeon, he took a look at what's going on and in his opinion probably a recurrence. Did a biopsy, scheduled a whole body pet/ct for Thursday, following Thurday I see the cancer surgeon, go from there. Not looking good at this point. Doc doesn't think they'll do another surgery, especialy since it looks like the cancer spread elswhere, there's a nodule in my neck that is not even close to any lymph nodes, etc.
So yesterday I was trying to keep positive, last night and this morning it kind of hit me, hope I can do chemotherapy and it has some positive affects on the tumors. See what next week brings.

The can remove the nodule no? then maybe reradiate? hoping it's not a recurrence... hugs and healing vibes

So you wont know for sure till next week. It's going to be hard until they come up with a firm diagnosis and some sort of plan. I'm thinking of you and crossing my fingers that it's not a recurrence and if it is, there is a treatment plan. I hope you can cram the next few days with good books, movies, walks, bike rides or whatever leisure/work activities you enjoy.

Vent your feelings here!

These days they are coming up with a lot of different new meds. Like our MO who is in charge of drug development at our hospital says, "there is always something (i.e. New med to try)." Things will become clearer once you have had the imaging and the biopsy. Right now, I am sure even the doctors don't know exactly what they are dealing with. Take Alpaca's very good advice for the next few days. I will be wishing for the very very best for you.

Hey GM... how is your hubby doing? hugs.

I hope you get some great news after they do this CT scan. Get right back on that bicycle!

Got "The Phone Call" this morning from my local ENT, the cancer surgeon I"m seeing on Thursday called him with the results. (they used to work together so sort of buddy buddy)

Preminary is the biopsy confirmed it is a tumour. PET/CT confirms, also that it has metastisized to the lungs amoung other placees. Basically suggesting palliive chemotherapy, won't cure but may slow down. What's there is beyond any 'curing' at this point.

Luckily my mom has been in town, wife insisted she come up after we sort of had an idea what was going on. Having a lot of family talks, etc. I don't have it in my anymore to be the "caancer warrior", just want to get affairs in order, get decent hopefullly pain free quaity of life for remaining time, get my head right for the next journey.

And so it goes

Bob, not the news any of us wants to hear. If there's anything I may be able to help you with, just ask.

Bob, I'm sorry that you didn't get the news you were hoping for. Your post reminded me of the time when the doctor told us about John's lung metastases and how devastated I felt. That was one and a half years ago. Since then, I have learned not to see it as a "fight" against cancer as it is in no way an equal fight. It is something that I have learned to live with and take a step at a time. I don't look at the "big picture," I fix my eyes on the next step I have to take, and then the next, and the next. John has found seeing a therapist helps too.

I don't know if all this will help give you some comfort or help you to see a way forward. It is tough and I know that different people have different ways of coping with it. I just hope to share my experience with you.

All the very best, my friend.

So sorry to hear about the mets to the lungs. I was at that same fork but for me I went down the other path. The cancer may never be killed off but it certainly might be controlled to where you maintain a pretty good quality of living. Hopefully, you will seek treatment to try to manage it. Take care

I am so sorry that you got bad news. And yes, the cancer warrior view can just add another layer of stress onto the patient. There is a time for that view but sometimes acceptance is healthier.

I really like the advice Gloria has given you based on her experience with her husband. One step at a time.

Great that your family has got together and you're sort of in this together. We are all behind you too. You sound like a terrific guy and if I was a praying type person I'd be praying hard out for you now!

I am so sorry to hear this, JAH. I know how devastating that phone call is and I understand how you feel completely. Reading your signature, you are have been a warrior and are still - dealing with this on your terms takes so much strength and warrior spirit, too.

I wish none of us had to ever get these calls or make these decisions. I know all of this sounds so trite -- it really does -- but my heartfelt best thoughts to you and yours!

The Hellion

Has anyone heard from jet age since his last post? I don't have a working email for him, and I was hoping someone did or has been communicating with him.

I am concerned that we have lost Bob. I have no direct contact to him and there is no reply to the email he registered on the forums with. I hope that I am wrong he is a great man, and helped many on these boards over the years.

I finally have heard from Bob's family tonight. The news is not good.

"This is Nicole Zhou, Bob Szabolcsky's wife. I am saddened to let you know that Bob passed away on March 25th."

A good man taken far too early from all of us. Brian

Extending my most heartfelt sympathy to you, Brian and to Bob's family. JetAge was a longtime member, helping many others over the years. Its always a sad day when we lose another one of our own. Rest in Peace, Bob.

It is alway very sad to hear of another warrior lose the final battle. Looking at his profile, he was a charter member of OCF. Brian, even though each one we lose is disheartening, take joy and comfort knowing how much better life is for those benefiting from your passion and commitment to OCF.

I am saddened to hear of Bob's passing. I only starting reading his posts fairly recently and I felt a connection to him having done a lot of work myself in China. Rest in peace, Bob, where there is no pain. You will be missed dearly.

I am very sorry to read this. A strong personality shone out of his posts and I will miss his presence here.

Condolences to the family.

I'm sorry to hear of Bob's loss, who meant so much to many here.

Sorry to hear...

Its always so sad to hear this news.

Prayers to the family

That was so very quick!!! my condolences to his family - and hugs and blessings to you all.