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When You Least Expect It...

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Folks,

I'm home. A bit worse off for the wear unfortunately :(

Surgery started with a look see around and a larygoscopy. There was a suspicious area in the back of my tongue that warranted further examination. Turns out they took out my lingual tonsils. They're off to the lab along with more BOT biopsies and the tumors.

Then came the major surgery and alot more than I imagined or anticipated. I had a selective neck dissection left side. They removed two large tumors as well as other lymph nodes. The tumors were over 4cm each and had grown, wrapped and intertwined into sensitive structures in my neck, nerves, arteries and muscles. This presented challenges as it was very time consuming and delicate surgery. In all, I was under the knife for over 5 hours. We won't know until the pathology reports come back but the tumors were whole and intact. With the removal of the tumors, it means that rads will be more targeted and not as strong so that's a positive. If in fact the tumors are encapsulated, chemo won't be necessary. 

I awoke in severe pain as I was having bladder spasms from the catheter as well as the surgery. I was taken to ICU because of my heart issues. The pulled out and replaced the catheter (yeah guys... cringe) and it really didn't solve the issue. By 1am I was in so much distress that I begged the on call ICU doctor to just pull the dang thing out. He did with the promise of it going back in if I didn't urinate within 6 hours. Fortunately, but with much pain and irritation I did so within 4 hours. 

Here's where it's really Ouch :(  Due to the delicate nature of the surgery, nerves were stretched and moved, Arteries were carefully worked around and muscles cut and repaired, The morbidity of this surgery was much worse than I expected. While the Team is very pleased with the results, I wasn't mentally nor physicaly prepared. 

I have a large very nasty looking scar on the left side of my neck with what looks like holes the size of golf balls. It looks horrid! I have a tube draining fluids coming out of my neck and a little collection ball pined to my t-shirt. My left ear is totally numb and the feeling will most likely never return. My tongue is numb and the feeling should return in 4-5 months but not 100%. I have left shoulder pain and limited movement. Head and neck movement is obviously limited. I have physical therapy prescribed and will have to work on this pretty hard in order to get some of it back. I had thought I would be able to go back to work next Wednesday but there's no way! I have to go to my local ENT next week to get the drainage tube pulled and I have to return to Baltimore to have the staples removed (all 20 of them). The pain is averaging 4-6 or more until the meds kick in. So the discomfort along with the fact I look like an experiment of Dr Frankenstein has me down and out for a little while. 

After this comes the appointment with the Team to discuss the treatment plan. It's still looking like early March.

"T"

wolfen's picture
wolfen
Posts: 1169
Joined: Apr 2009

So happy this part is over for you. At this point, MDA docs aren't talking any surgery at all for my hubby. Sounds like yours was really rough. I hope you will be able to rest and that the pain meds keep you comfortable. I'm sure many will reply with helpful hints for your comfort and speedy recovery.

Take Care,

Luv,

Wolfen   

Ingrid K's picture
Ingrid K
Posts: 809
Joined: Mar 2011

Well, now we know what the T stands for....TOUGH. 

You are doing great if you are already up and online on day one, like ditto says.

So sorry that we didn't warn you a bit more about how awful your neck would look the day after surgery.  But it does get better really fast.  It will one day be just a little line that won't even be noticed.  I had the same neck dissection, my scar goes from one ear all the way around and up the middle of my chin and through the entire lip.  My hubby wouldn't even let my mom come to hospital until the 3rd day because I looked so awful.

It is good news that they seem to have gotten the tumors all in one.  Hopefully they got good margins.  I only needed radiation -- no chemo -- because I had good margins.

So now you just have to recover....take your pain meds...even if you don't need them YOU HAVE TO STAY AHEAD OF THE PAIN. 

And stay hydrated...it helps in healing.

Keep up the good work.

 

 

phrannie51's picture
phrannie51
Posts: 3597
Joined: Mar 2012

but what is "today" one day after surgery (the worst day is day two for pain, I think)...but what is today won't be what is down the road.  I was only threatened with a dissection, but never did have one....but many on here did have one.  The PT will get that arm going again, and the numbness will recede.  On one hand I'm sorry you weren't prepared, but I guess they really didn't know till they got in there....on the other hand...YEAH they got all that "Jack" out and I'm sending prayers and positive thoughts that the tumors are encapsuled (sounds like Jack was having a merry old time growing while you were waiting for this surgery!!). 

The one thing that everybody on here seems to say about the scar is that it disappears almost entirely...that in short order all you have is a line there.  The "experimental days" are short lived.   PT will help you regain the movement in your arm...There are a lot of folks here who have had the dissection that can give you tips and tricks to get you moving again.

Thank you for the update....I had you tucked in my pocket....think I'll keep you there.

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

"T",

so glad to see you at home! Dan had the same neck surgery. His ear feeling started coming back 3-4weeks later. By the end of rads, it was back. His incision went from the nape of his neck around front past the Addams apple. That was Nov 2nd, now, it's a skinny little line that is barely noticeable. He wasn't pretty out of surgery either, but it will get better fast. 

The good side effect of surgery, is in the local area, he couldn't feel much when it came to his neck looking pretty red During rads.

take the meds, keep them ahead of the pain.. It gets better pretty quickly. 

Also, as far as work... Dan didn't have time to go back after surgery, because treatments started exactly 4 weeks later.. Too many appts.

his only long term side effect is his nerve for his trapezius muscle is dead, and his muscle atrophied. He's good at compensating, and he too is headed for PT.

You did awesome.. One big step behind you.

Kari

longtermsurvivor's picture
longtermsurvivor
Posts: 1755
Joined: Mar 2010

You are about describing my radical neck dissection, the one that was done  with my first surgery back in 1998.  Don't panic, things will improve right along.  My dissection took about 6 hours, leaving me with a scar from my mastoid process to my clavical, and an anchor under my chin to the midpoint.  About thirty five staples worth.  The numbness over that side of my face, ear, neck, and upper chest was pretty bothersome.  And the three drains was pretty impressive as well.  I looked like Frankenstein.  My parents drove me from St Louis where I had the surgery, back home, about six hours away.  They stopped to eat in a truckstop, and hou should have seen the truckers gawking at my staples, lol.

 

All of this stuff gets better. The drains come out in a few days, the pain subsides pretty quickly, the numbness, believe it or not, fades away.   I am never aware of it any more, can feel normally on that side of things, although I don't sweat on that side of my faceSmile    So its time to chill out and recover some.  It will all work out ok.  Heck, nowadays, having had a way more radical surgery than what I just described, complete with splitting my jaw, removing the floor of my mouth and reconstructing things,  given healing time, people really don't notice the defects.  They honestly aren't that apparent.  

Now be a good patient and take your pain medicine.

 

Pat

CivilMatt's picture
CivilMatt
Posts: 2803
Joined: May 2012

T,

 

Boy you jumped right in the deep end of the pool.  I feel for you buddy, but rest assured it will get better.

 

My “Jack” (if you don’t mind the borrow) required a Jugular Vein dissection as the SOB set-up camp for a long stay.  Like you, he was cut out of my life.  While there is still the hint of numbness (13 months) it is almost back to normal.

 

I am sorry you got caught off guard; everyone was pretty straight forward with you over the past few weeks.  Do you want us to take off the gloves?  Just kidding.

 

Relax now, Phase II will be a piece of cake.

 

Best,

 

Matt

HobbsDoggy
Posts: 165
Joined: Feb 2013

I also had a neck disection, not as bad as yours, but know about the drainage tube and they scar.  I am three months out from the surgery and the shoulder and neck are slowlly coming back.  I would say I have about 70% of my moition and strength back.  The docs said it will take a ffew more months to get back to close to normal.  My neck sometimes swells up then goes down again for no reason that the docs can find.  You have been through a ton of stuff, it will get better.  They gave me some easy arm streching exercises which I do in the shower and they have helped.

I am trying one of the stationary bikes with the handles that move to excersise my arms and if I go slow it works and helps quite a bit.

Best and hang in there.

ditto1
Posts: 630
Joined: Mar 2012

Wow all I can say is any man that can type a full story about what he just went thru which was needless to say tough, especially the cath removal, ooch is a better man than I .  I told Diane he is one tough dude, I dont think I could even open the computer let alone update us all what he just went thru, so in my opinion Jack does not stand a chance messing with you.   Seriously Diane and I are praying for you and your better half, but again You the Man..........

Dr.Ed
Posts: 22
Joined: Jan 2013

for both what youwent thru and how you must be to have handled it the way you did, I agree with ditto1, I was in no shape to communicate like you after my neck resection, and I didn't even have a catheter. Most likely your neck will heal just fine. I had an ugly scar that is still pretty noticable if you look for it, but its not the first thing you see when I say hello. My right ear is still numb but I have decided I don't care about that,I can hear, and it doesn't hurt, so I'm OK with it.. I lost some reach and strength but not enough to interupt most of my activities. Odds are your body will slowly recover from the surgery, hoping that the tumors were totally removed. Good news about less rad, that was what really got me so the less they need, the better..Stay strong..Ed

lts's picture
lts
Posts: 75
Joined: Nov 2012

You will feel better in a couple of weeks. I had neck disection, not as in depth as yours, but they removed Submandibular Gland, 30 lymph nodes, some muscle and fat the gland was nested in and around. Does this drain look like yours? Mine had a ball at the end they would squeze and it would suck out the juice. Yuk!

Luke

 

 

 

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hey Luke,

Mine is a bit more extensive and perhaps because it's a couple days old and has big ol' satples, it looks much nastier. The tube is coming out of the bottom of my neck just above the clavicle. There's a ball at the end as you describe. They showed us how to drain it. I drained it this morning around 5am and there's less fluid than before. 

I was finally able to sleep a bit off and on. Liquid oxycodone is making it tolerable. The tonsil removal and swallowing is much more difficult than my neck. My left ear and surrounding area are totally numb. Tongue is numb and my left arm and shoulder are really weak. I went through the exercises the PT gave me and while I'm weak andstiff, I got through them. 

I just wasn't expecting it to be this intense. I guess they don't really know until they get in there. I did get to see the DaVinci robot before I passed out in the OR. The last thing I remember was "Where going to give you something to help you relax" The lights above the table went from two to four and that was it! 

I was able to get some soup in me a little while ago and as soon as Marcia gets in from running errands, I'm gonna get a much needed shower ;)

Thanks all for the support. 

"T"

 

 

 

Grandmax4's picture
Grandmax4
Posts: 576
Joined: Dec 2011

am amazed that you're able to type about your surgery, and the fact that you're home. My surgery, that removed my epiglottis, was a 9 hour event , my cut was from one ear to the other, no stitches, staples...glue!! I had four of those drain ball thingys and was in the hospital ( The James, Columbus ,Ohio) for 8 days....my left ear has remained numb, but I can hear from it..just feels odd when I put my earrings in. Scar in in neck crease so barely noticeable, hope you have a quick, uneventful recovery, don't try to rush the healing, you have been through major surgery Captain America!

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

Glad that much of your journey is over.  Just out of curiousity, what was the name of your doctor(s) that performed the operation?  One of the ones that did my mandible was out of the OTO dept. at Hopkins.

hwt's picture
hwt
Posts: 1819
Joined: Jun 2012

I guess I am glad they put me in a coma for 4 days following my 19 hour surgery so I didn't have to see all of that. If I can suggest anything, as soon as your doctors allow, start to exercise opening your mouth, I regret that I didn't know that and now my mouth doesn't open as wide as it used to. I too had shoulder pain and could not lift my arm to wash my hair but with a few therapy sessions it was back to normal. Prayers that the labs all come back in your favor.

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

!9 hours? Induced coma? Dang! I'm in a drug enduced stupor if that counts.  Fortunately I don't have hair to wash so the shoulder I can deal with. I've been eating liquids. Soup, cream of wheat... little bits as I can get them down so my mouth is working even though the left side is a little droopy and the throat hurts like all hell. I did my PT earlier and it was enough to tire me out a bit.

We should know in a week about the labs. Dr Richmon took photos of "Jack" so I'll get to see who I've been fighting against. 

"T"

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi George,

The surgical oncologist is Dr Jeremy Richmon, one of the top in the country cincerning the DaVinci robot. Chemo/medical oncologist Dr Christine Chang. Radiation oncologist Dr Harry Quon. There is a speech/language pathologist and a physical therapist as well as oncology nurse. I met so many doctors, interns and nurses my head was spinning. Most of them are "kids" as I'm old enough to be their father! I was expecting the theme from "Scrubs" to start playing ;)

"T"

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

was the lead doctor in my 11 hour mandibular replacement surgery. Nice guy with great bedside manner. Unfortunately, I was not one of his successes. LOL, tell him you know his bone graft failure that he did at GBMC along with Dr. Ha in June of 2011. The one that the left carotid broke in half because of arteriosclerosis.

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hey T

It is SO critical for one to know their care is in the best of hands. Glad you feel that way about your team. I found the "intern" thing quite annoying, even though I understand they are being exposed to new and different and maybe unusual conditions. 

I know you feel a bit ambushed by your current experience. I had a "not knowing" close call to but did not suffer any consequences when the wreck blew by me. Do remember that doctors and machines are still limited to what can be done with our cancers and as has just been mentioned even the gold plating on them does not assure it rubs off. 

Personally, my view from what I have learned thus far is there is really no new significant protocol in any phase of testing that has demonstrated any improved outcomes for what we have (HNC). If there were we would have some examples here and I can not recollect a single plan that had some something unique element. Not just some variation of known drugs or therapies but something really differernt like drink some gene juice or get injected with some stems cells in the neck.

My surgeon who fellowed at MSKCC told me the only trials are good for now is to vary the existing protocols to lessen the side effects and that is all I have experienced as well. My own treatment is undergoing a slight variation of the typical induction TPF as my MO wants to lessen the side effects while maintaining the efficacy of the drug therapy.

Hang in there! don

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

3rd day out and ~Whew~... this is no picnic... I'll leave it at that. 

As unpleasent as this is, to think the original plan was to do rads and chemo without removing "Jack", especially in light of the party he was having in my neck, would have been devastating. While surgery first is not always the protocol these days, the Team felt it best based on what they saw. Even at that, the tumors were more extensive than they saw in the scans. While I'll be paying the price for a while with recovery, it paints a brighter picture for treatment. 

I'm sleeping when I can and eating when I can as well. Thank you all for your kind words and support. It's appreciated more than you know. 

"T"

 

Goalie's picture
Goalie
Posts: 184
Joined: Sep 2010

Hey Fishman, I am sorry to hear about your surgery and its extent. It is likely a great source of comfort to know that your Alien is now out. I was lucky in that we had already done the tonsillectomy and the nine weeks of rads and chemo before surgery and then did a scan. Thus we were pretty sure that he was only going to go in and clean out junk. I will admit that for the week the tubes were in I did not go out in public much. But soon after that, I was out and about esp once we got the staples out. And a couple of weeks later was down in Mexico City for work. That must have been quite frightening for them all even though by then it just looked like someone had slit my throat -- which was true even if intentional. By the way, when they do the dissection after rads, they have to wait longer because of all the damage to the skin and they have to wait longer to take out stitches/staples. I include a couple of photos from then and will see about one from the present.

Tubes

Tubes Gone

Probably from the time a month or more later when the damage and swelling went down enough for it to be touched, my wife has been massaging my neck nearly every day. He took 26 lymph nodes from that side and so, until the system found new paths, I had bad turkey neck and a big wattle under the chin. The daily massage moved the fluids and opened pathways and the Vitamin E oil she applied on the skin helped the scar to heal. It took probably a year for all the hard scar tissue along the suture to fully break up. Now two years later (last week!) it is nearly invisible and I actually have a chin. It is also neither blown up nor a big cavity, both of which it was at different times. And, because he did not have to cut anywhere near as much on me, only a few small areas are still numb where originally it was from eartop to chin. But it takes tremendous patience and dedication (nearly) every single day to achieve this. I can tell you that if I had to do it all myself, it would never have happened. It was my lovely wife.

On another note, I see more Baltimore-cented people on here (at least for treatment). If anyone wanted, I would come up there to meet when people are in town. We could go for a few drinks and maybe a steak! (Ha! Those days are just a fond memory now. How about a milkshake and a bowl of soup?) We could invite Paintslinger and George and whomever else. In any case, take heart in that you are on the road to complete recovery. Doug

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

Hi Doug and thanks! That looks like what they did to me but the scar goes up under my ear and down to my adams apple (almost). Just one tube coming out from the lower part of my neck. 

I'll have to ask the Dr how many lymph nodes he took out. I know he took two large tumors (4+cm) and a bunch of others but I don't recall specifically how many. 

The pain has been excruciating. Unfortunately, Marcia is a bystander right now. I just need some space when I'm in pain and there's nothing she can really do. Swallowing has been nearly impossible as I can't feel my tongue. I had to crush my meds up and eat them with apple sauce. I nearly choke sipping water. 

I have a call into the surgeon to run some things by him. 

My friend had an ear to ear dissection and you can barely tell a year and a half out. It's going to be a long journey for sure...

There was a time I'd be saying let's grab a good stogie and a glass of cognac but those days are forever gone. It's milkshakes, smoothies and soups from now on ;)

"T"

 

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

Your a hockey player Doug.... you can make that scar work in your favor....

Just think of the new handle you could have...

Doug the Butcher...., fear the spear....

Send your opposing team into a head game ... don't even come near that Doug guy..., he'll gut you before you realize you've even been cut...

LOL...have some fun with it Doug...

Hoping you and Mary are doing well, and kicking butt on the ice.

John

 

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

I just need to vent a little. The pain is ridiculous! I can't swallow! I can get little sips of water down and that's it. I have to crush up my meds and eat them in applesauce. That's just YUMMY! NOT! Other than that, some jello and cream of wheat is all I've had to eat since Friday. The pain is just stupid! I'm losing IQ points I swear! I feel bad complaining especially when I hear of folks getting their mouth rebuilt but still... ~ Wahhh~  When you can't settle in and watch a 20 minute sitcom without losing track of the plot you know you're hurting ~lol~ 

So here it is going in midnight, I just took my dose of Oxycontin and I'm sitting here in a drug enduced stupor typing and seeing double to take my mind off of the pain. I spoke to the surgeon last night and he said to call him if the pain doesn't lessen. It did for a little while this afternoon and I even went for a walk but now? Sheesh! He said he can prescribe a steroid to help. We'll see. I'm off to my local ENT to have the drainage tube removed tomorrow morning and I'm scheduled to have the staples taken out next Monday and go over the results of the biopsies as well as set up appointments with the team for treatment. I know with the other tonsillectomy, it was a full week before I started to turn the corner so maybe it's just a waiting game.  

Ohhhh... Let's not forget the swollen double gobbler neck with 5 day old stubble.... that's just so attractive. 

Ok... I'm done... here comes the bobble head... Thanks for listening.... 

"T" ~ bobble` nod... "T".... 

 

 

donfoo's picture
donfoo
Posts: 1144
Joined: Dec 2012

Hi T,

Thanks for the update, I know how hard it must be to focus and string your thoughts together when having so much sensory overload. If it hurts take more meds, that is my motto and my MO. No need to suffer and you will heal faster under less stress too. Chemo brain is probably in control, just cross off the weeks ahead so you have no expectation of doing anything except healing. don

 

fishmanpa's picture
fishmanpa
Posts: 1098
Joined: Jan 2013

The Looney Tunes where the little yappy puppy goes up to a sleeping Sylvester the cat and does that bark? Sylvester ends up attached to the ceiling! ~lol~

That was me this morning when the ENT pulled the tube from my neck! OMG! I literally shed involuntary tears! He's like... "good.. there's just one suture". He then says "Ready"? I'm pretty numb there anyway and I'm thinking this will be like having a stitch taken out. No worse than a bee sting if that... Ohhh but Noooooo! I literally started crawling out of the chair! ~whew~ Apparently the tube is no wider than an aquarium air tube on the outside but twice the diameter on the inside! Glad that's over with! Next are the staples on Monday. I'm asking for a topical pain killer I assure you! ~lol~

"T"

 

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

T,

steal the bottle of topical numbing ... Might come in handy later :)

K

Skiffin16's picture
Skiffin16
Posts: 8052
Joined: Sep 2009

LOL, just teasing....

Just think on the positive side though..., one more step closer to being Abi-Normal...Cool

John

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