A Rare Breed Indeed
Hey everyone,
What an absolutely crazy two days. I had an appointment to go see my surgeon on Monday morning to get the staples out and getthe results of the biopsies and surgery. I did make it to my appointment but unfortunately not in the manner I would have preferred.
I went to bed Sunday night and was awakened by a choking sensation around 2:45am. I went to the bathroom and it felt like I had a "lugie" in the back of my throat. I coughed and felt it coming so I did he usual "hock-spit" and out came a huge blood clot and a lot of mucous. I spit again and there was blood everywhere! Ok, Ok... don't panic... I rinsed a few times but I was definitely bleeding pretty freely.
Not wanting to disturb Marcia, I went downstairs and got a glass of ice water and gargled. I had a bit of bleeding on the first tonsillectomy and gargling with ice water stopped the bleeding. 15 minutes later the blood flow began to lessen and I thought I had quelled the flow. 5 minutes later, I felt something large and uncomfortable again in the back of my throat and again, out comes another huge clot! Now I'm literally dripping blood from my mouth. This was not good!
I went with more ice and ice water but it wasn't stopping. It had now been close to 45 minutes (3:30am). I woke Marcia and we drove to the ER here in town. I was bleeding pretty badly when I got there. They got me in a bed, IVs set up and the doc came to see me. He couldn't see the source of the bleeding but it was coming from the back of my throat. I continued to rinse and spit and again it slowed down and then stopped. At that time, the ER doctor was on the phone with Johns Hopkins. The ENT on call said if it stays quiet then we're good. The moment he said that, another clot came up and I was bleeding again. Ok... this wasn't good at all. If fact, we're talking REALLY bad. This was a life threatening situation. The hospital where I was at was not prepared to do surgeries like that. I needed to get to Johns Hopkins STAT!
The ER doc wanted to fly me to Johns Hopkins via helicopter. It's a 45 minute flight as opposed to a 2 hour drive. Unfortunately, I could get there faster by ambulance based on the copter's availability so off I went.
I bled moderately on the ride over but they kept me stable with fluids. I arrived at Johns Hopkins at 10:30am (in time for my appointment with Dr. Richmon). They were all aware of what was going on and within 25 minutes of my arrival I was prepped and ready for emergency surgery. Dr Richmon met me in the OR and that's all I remember until I woke up in recovery.
Very fortunately I didn't have a "blowout". It was more like a slow leak but nonetheless, it still was a very dangerous emergency situation. The wound was quarterized and repaired. This happened 11 days after surgery and is very rare. There is no explanation other than the blood thinners I'm on for my heart probably had something to do with it. It's also a VERY rare occurance, happening in only 1-2% of surgeries like mine. I lost about a pint of blood through this little ordeal.
So here I was at Johns Hopkins again, fresh out of surgery with throat pain to end all! It was almost like starting over! (I did get the staples out and the incision looks good).
The great news is I'm alive! 
On Monday evening Dr. Richmon came to see me and everything looked good. He then went over the results of the biopsies and surgery on the 7th. The removal of the two large tumors we very successful. He also took another 24 lymph nodes from my neck and he feels he was able to remove all the cancer. Unfortunately, all biopsies came back negative. This truly is an unknown primary and as you all know, very rare indeed. Also, the tumors were extracapsulated, in other words, the seal was broken which means cancer cells are on the lymph highway. This means I'll be getting chemo along with the rads. However, one GOOD thing came of this... It's HPV positive! And again, as you all know, HPV H&N cancers respond very favorably to treatment.
I met with the Radiation Oncologist this afternoon and got some good news as well. Because they feel they got most of the cancer in my neck, we won't require as strong a rad reatment. It will still encompass a larger field but won't be as detrimental with lesser severe side effects. A PEG was discussed and while Dr. Richmon thinks I can get away without it, Dr Quon feels it's better to be safe than sorry and will propose that I get the PEG and a port. Dr Quon and I discussed the amount of pain I was in and he put me on a drug called Neurontin. He's been head of a study that has shown that this anti-siezure drug lessens sores in the throat and mouth and helps the body to tolerate pain better. An added benefit is that I'll sleep like a baby while taking it and it will aliviate the nerve pain I've been experiencing since the surgery.
I have appointments next Monday with the team. The sim will be done and mask will be made. The treatment plan will be laid out and the process of getting me lodging and treatment will be underway.
So the ship is being prepared for the voyage. It's just a matter of breaking the bottle over the bow and getting underway!
It's good to be alive and be able to tell you!
"T"
Comments
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Wow
Boy you have gone through it, I know about the blood thinners, I had a quad by-pass in 2008. Was hospitalized in 2011 for a severe bleeding ulcer. I had to make a decision as to where to go for treatment etc. I went with Hershey Med. John Hopkins was a candidate but the drive was a little longer. I live in York PA and am also a musician originally from England, where in PA are you? Your attitude is great, that is a huge asset. Denis
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In an emergency may I call youGrandmax4 said:OMGosh
you just keep amazing me with your courage,level-headedness ( is that a word) and actions~~~so sorry "Jack" is being such a bas__ard, but you can beat this..wow, I'm so inspired by you
I have no doubt at the time you were going thru this you were concerned, but I would have freaked out, not a good personality trait but have no doubt about it. Reading your story its like you just took it all in stride, with that tpye of courage and not getting freaked out tells me you will be fine getting thru this. Just pray you continue to get better, but if we ever need a Leader to get us over the hill with bombs blowing up all around us you got my vote.
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It's Just A Flesh Wound...
LOL, not sure if you are a Monte Python fan or not...
Sounds like everyhting was working in your favor between timing, the MD's and facilities... (though the chopper rides are always cool..), though I've only been in military choppers...and carrying weapons, LOL... People tend to get out of your way if you have gatlin guns strapped on the skids, LOL..
Actually there are several success stories here with unknown primaries, so wouldn't get too terribly concerned.
The chemo is or was very doable for me, and many..., but some do have problems, but that goes without saying.
The port is nothing but a thing, and it makes chemo infusion a piece of cake... just getting it flushed every 6 - 8 weeks post Tx tends to get old. Especially if your MD likes to leave it in for two plus years as mine did.
I'm sure you'll be glad to get the train rollin... It's sort of like being in limbo when you aren't making a lot of progress...
Glad you were good at being concerned enough not to blow off your ordeal until the morning..., might not have turned out so well.
Keep up the postive vibes, they will carry you through the worst of times.
JG
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What a "moment"
There is no straight line from Dx to Tx to surviving cancer. The road is not only windy and bumpy, but we rarely see the blind turns and bumps coming to get ready for them. You did amazingly well to keep your wits about you when many others would have hit the panic button. Draw on that experience and level-headedness (it IS a word for me!) the next time Jack throws you a high-hard fastball when you're looking for a slow curve.
Use your success from that "moment" to help you and your caregiver when the next one pops up. This early in the game, you will undoubtedly have more moments ahead.
Mike
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Best to You
Wow what a start! I agree that you seem to have a great team in place who is on top of the game. Now the fun begins. Hang in there the HPV sure helps and sounds like they have a good handle on how to blast the C out.
Will be thinking about you and have continued interest in your progress.
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OMG....I sat here reading this...
mesmorized, like reading an action novel....telling myself to keep in mind that you must be ok because you wrote this.....but I was still on the edge of my seat!! You are surely a calm thinker....I'd like to think of myself as one, too....but I'm afraid this would have freaked me out, too! Marcia must have been fit to be tied.
I am relieved that Jack is about to get his walking papers, tho....I was afraid this might set back a start date....glad to know that this ship is about to leave port! I went with the PEG tube....the words "better safe than sorry" have always resonated with me...LOL....plus you don't get a trophy for going without the PEG.....you do however, get to skip another surgery at a time when you feel less than good (not to mention, if I'd waited until I absolutely needed it, I would have still had to wait a few days to use it....it would have been too hurtie to start messing with it until it healed).
You are an amazing person T.....my stomach is still doing flips.....
p
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Dang, "T"HobbsDoggy said:Best to You
Wow what a start! I agree that you seem to have a great team in place who is on top of the game. Now the fun begins. Hang in there the HPV sure helps and sounds like they have a good handle on how to blast the C out.
Will be thinking about you and have continued interest in your progress.
I know, you just wanted to ride in that ambulance! So glad you went to ER and they were able to get you transferred safely. Your team is really on top of everything. I'm wishing you a speedy recovery from this.
My hubby used to take Neurontin for diabetic neuropathy. It was not succesful for him for that purpose and his chief complaint was the grogginess, which is probably a good thing for you right now. It's funny how opinions differ from doctor to doctor. My hubby's rad doctor doesn't want him to be on blood thinners during radiation. Risky for his A-fib, but necessary for his cancer treatment.
Please take care,
Luv,
Wolfen
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Ok...phrannie51 said:OMG....I sat here reading this...
mesmorized, like reading an action novel....telling myself to keep in mind that you must be ok because you wrote this.....but I was still on the edge of my seat!! You are surely a calm thinker....I'd like to think of myself as one, too....but I'm afraid this would have freaked me out, too! Marcia must have been fit to be tied.
I am relieved that Jack is about to get his walking papers, tho....I was afraid this might set back a start date....glad to know that this ship is about to leave port! I went with the PEG tube....the words "better safe than sorry" have always resonated with me...LOL....plus you don't get a trophy for going without the PEG.....you do however, get to skip another surgery at a time when you feel less than good (not to mention, if I'd waited until I absolutely needed it, I would have still had to wait a few days to use it....it would have been too hurtie to start messing with it until it healed).
You are an amazing person T.....my stomach is still doing flips.....
p
I feel like I just watched a scary movie! Kudos to you for being so calm and rational. Just couldn't do this the boring way could ya? :-)
I'm glad you got mostly good news from your biopsy and that the bleeding was able to be stopped before you needed transfusions!
Now let's get this show on the road and kick the crud out of Jack!
Keep us posted, but please make the sequel a little more uneventful.
Billie0 -
never a dull moment
Hi T,
That was a pretty good story, I am glad all systems are back on-line. You know since I had radiation I can not hock-spit any more. I can spit, but no hock (it does not work).
I liked the idea of gargling with ice water, too cold for me, but it made sense.
I hope Marcia is getting her bearings quickly. Once these surgeries heal and your body adapts to treatments I hope you have an uneventful journey (you both deserve it).
Jack is already cut-out of your life, now let’s calmly eradicate him.
Best,
Matt
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If you're going to do it....
I like to think I give 100+% effort into everything I do and why wouldn't that apply with my cancer? Cancer sucks, so why not make it REALLY suck? I believe I'm going to purposely become a slacker in this case with the exception of the fighting part. The rest can go to hell
~
I've mentioned this before on the boards, but having survived 2 heart attacks that should have killed me or the at the very least, caused major heart damage and come out relatively unscathed. I know what's it's like to be facing a life threatening situation. The difference here was I wasn't in any pain. I wasn't "gushing" blood but I could feel it and taste it constantly pooling up in my mouth.When I looked at the paperwork from Johns Hopkins, I was admitted for: Post-op bleeding, post-op corotid surgery. So the bleeding was from the right corotid artery area (tonsil bed) which supplies blood to the head and neck (tonsils). Yeah... pretty serious stuff.
As far as staying calm? Again, I was more aggravated than anything else! Here I was, 11 days out of major surgery, been through one hell of a recovery (heart surgery was easier than this) and finally seeing the light of day and then BAM! I was supposed to be at Johns Hopkins anyway to have the staples removed. Could I do it like any normal person? Nooooo! I have to make things more difficult and add a dramatic flair! The helicopter would have been a very nice artistic touch but the ambulance sufficed. About 20 minutes out, I started bleeding heavier and they hit the afterburners and turned the lights on for effect. I wasn't in any pain outside of the pain I already had. The only thing that gave me any indication that this was really serious was I was beginning to feel a little weak and dizzy from blood loss and I could taste the blood in my stomach when I belched (yuck!). I'll have to check to see if they gave me a transfusion. I know I signed a consent form to do so before I went to the OR and I had lost about a pint of blood based on estimations of blood tests the day I left the hospital and the moment I checked into JH again. I was in the ER in an intensive care room being prepped for surgery with no less than 10 doctors and nurses in and out and buzzing around me and the levity of the situation still wasn't sinking in. It wasn't until one of the doctors said "Mr "T", your life is in danger here. We need to get you upstairs now!" that I had an "Oh S%$#" moment.
Poor Marcia! Sheesh! She doesn't drive yet. She has her permit and can get around town with supervision but nope, never drove in her life. She grew up in Quito in Ecuador and never had the need to drive. It's just one of those things. So, when this happened, she's on her own and has to rely on our network of support. I can't imagine what she was going through her mind when they carted me off in an ambulance (regulations prohibit her from coming along). Then, to get a call from me telling her I'm going into the OR and this is really serious followed by a call from one of the team doctors filling her in, she had to be a wreck! She was very happy to have me home and Socrates hasn't left me far out of his site. In retrospect, it was probably best she wasn't there to hear how serious this was.
I can only hope that things go a lot smoother from here on out. I feel MUCH better this morning having actually slept more than an hour. They changed my pain med back to hydrocodone and updated the dosage so I have that under control. I actually hungry and I think I'll get something to eat. I'm on a full liquid diet now and can advance to soft solids as I can tolerate them. I believe some eggs are in order
It's an awesome feeling knowing that "Jack" is now outside of my body. Now that I'm healing from the surgery, you can see a dramtic difference in the appearence of my neck. I knew the tumors were growing as I could see and feel them but still. It's kind of like a before/after weight loss image. I'll get to see and take home images of "Jack" next Monday. Now it's time to go after and eradicate his minions...
"T"0 -
well now
well now, i agree that was another challenge for you and your wife. happy to hear it was a somewhat minor repair to the leak.
thanks for sharing your rare couple day ride. good to hear your treatment plan is somewhat slightly challenging.
good luck with your voyage
john
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wow
Oh my, you have been to he** and back ! I had to even reread parts of this post as I couldn't believe all of this could happen. So glad you went straight to the ER....and poor Marci also.
glad you are back home and things have calmed down.
No more spitting for you....and based on the throat issues you've already had....get the PEG.
I think that you know what to expect for the mask fitting and rad simulation...hope it is uneventful for you.
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What are going to do? Bleed on me?Skiffin16 said:It's Just A Flesh Wound...
LOL, not sure if you are a Monte Python fan or not...
Sounds like everyhting was working in your favor between timing, the MD's and facilities... (though the chopper rides are always cool..), though I've only been in military choppers...and carrying weapons, LOL... People tend to get out of your way if you have gatlin guns strapped on the skids, LOL..
Actually there are several success stories here with unknown primaries, so wouldn't get too terribly concerned.
The chemo is or was very doable for me, and many..., but some do have problems, but that goes without saying.
The port is nothing but a thing, and it makes chemo infusion a piece of cake... just getting it flushed every 6 - 8 weeks post Tx tends to get old. Especially if your MD likes to leave it in for two plus years as mine did.
I'm sure you'll be glad to get the train rollin... It's sort of like being in limbo when you aren't making a lot of progress...
Glad you were good at being concerned enough not to blow off your ordeal until the morning..., might not have turned out so well.
Keep up the postive vibes, they will carry you through the worst of times.
JG
Am I a fan? I'm the proud owner of the special edition DVD of The Holy Grail! ~lol~
We'll be discussing the PEG and port again Monday but I've made my preferences known and my Radiation Oncologist is on board.
"T"0 -
So happy to hear you are writingfishmanpa said:If you're going to do it....
I like to think I give 100+% effort into everything I do and why wouldn't that apply with my cancer? Cancer sucks, so why not make it REALLY suck? I believe I'm going to purposely become a slacker in this case with the exception of the fighting part. The rest can go to hell
~
I've mentioned this before on the boards, but having survived 2 heart attacks that should have killed me or the at the very least, caused major heart damage and come out relatively unscathed. I know what's it's like to be facing a life threatening situation. The difference here was I wasn't in any pain. I wasn't "gushing" blood but I could feel it and taste it constantly pooling up in my mouth.When I looked at the paperwork from Johns Hopkins, I was admitted for: Post-op bleeding, post-op corotid surgery. So the bleeding was from the right corotid artery area (tonsil bed) which supplies blood to the head and neck (tonsils). Yeah... pretty serious stuff.
As far as staying calm? Again, I was more aggravated than anything else! Here I was, 11 days out of major surgery, been through one hell of a recovery (heart surgery was easier than this) and finally seeing the light of day and then BAM! I was supposed to be at Johns Hopkins anyway to have the staples removed. Could I do it like any normal person? Nooooo! I have to make things more difficult and add a dramatic flair! The helicopter would have been a very nice artistic touch but the ambulance sufficed. About 20 minutes out, I started bleeding heavier and they hit the afterburners and turned the lights on for effect. I wasn't in any pain outside of the pain I already had. The only thing that gave me any indication that this was really serious was I was beginning to feel a little weak and dizzy from blood loss and I could taste the blood in my stomach when I belched (yuck!). I'll have to check to see if they gave me a transfusion. I know I signed a consent form to do so before I went to the OR and I had lost about a pint of blood based on estimations of blood tests the day I left the hospital and the moment I checked into JH again. I was in the ER in an intensive care room being prepped for surgery with no less than 10 doctors and nurses in and out and buzzing around me and the levity of the situation still wasn't sinking in. It wasn't until one of the doctors said "Mr "T", your life is in danger here. We need to get you upstairs now!" that I had an "Oh S%$#" moment.
Poor Marcia! Sheesh! She doesn't drive yet. She has her permit and can get around town with supervision but nope, never drove in her life. She grew up in Quito in Ecuador and never had the need to drive. It's just one of those things. So, when this happened, she's on her own and has to rely on our network of support. I can't imagine what she was going through her mind when they carted me off in an ambulance (regulations prohibit her from coming along). Then, to get a call from me telling her I'm going into the OR and this is really serious followed by a call from one of the team doctors filling her in, she had to be a wreck! She was very happy to have me home and Socrates hasn't left me far out of his site. In retrospect, it was probably best she wasn't there to hear how serious this was.
I can only hope that things go a lot smoother from here on out. I feel MUCH better this morning having actually slept more than an hour. They changed my pain med back to hydrocodone and updated the dosage so I have that under control. I actually hungry and I think I'll get something to eat. I'm on a full liquid diet now and can advance to soft solids as I can tolerate them. I believe some eggs are in order
It's an awesome feeling knowing that "Jack" is now outside of my body. Now that I'm healing from the surgery, you can see a dramtic difference in the appearence of my neck. I knew the tumors were growing as I could see and feel them but still. It's kind of like a before/after weight loss image. I'll get to see and take home images of "Jack" next Monday. Now it's time to go after and eradicate his minions...
"T"Man,
The C monster sure dealed you so some dud cards from the deck. That is two for you, the blindsided whacks are no fun. You are strong of mind so stay the warrior, listen to your body and let it direct you too. best to you,
don
http:beatdown.cognacom.com (personal blog, you are invited to join)
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Wow
Wow that is some experience. I can relate somewhat. My dad was diagnosed with tonsil and lymph stage IV and his only symptom was nose bleeds. But nose bleeds that would come out like a faucet and on a couple of occasions would gush out of his mouth.(one particular trip to the e.r. He filled up one of those pink buckets they give you) very scary. W Later to find out that it was the tumor on his tonsil hemoraging. He to was on plavix and they all seemed to blame the bleeding on this medication. fast forward to present, he has finished chemo and radiation with a peg that he recently removed and has had 2 Ned pet scans. Thanks be to god. He also was hpv positive and was 69 when he was diagnosed. In march he will be 71. I wish you all the best and am glad you are here to talk about it. Lol..a good attitude certainly helps get you thru some tough times along with prayer and faith. I wish you the best.
michelle
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Thin Bloodmichdjp said:Wow
Wow that is some experience. I can relate somewhat. My dad was diagnosed with tonsil and lymph stage IV and his only symptom was nose bleeds. But nose bleeds that would come out like a faucet and on a couple of occasions would gush out of his mouth.(one particular trip to the e.r. He filled up one of those pink buckets they give you) very scary. W Later to find out that it was the tumor on his tonsil hemoraging. He to was on plavix and they all seemed to blame the bleeding on this medication. fast forward to present, he has finished chemo and radiation with a peg that he recently removed and has had 2 Ned pet scans. Thanks be to god. He also was hpv positive and was 69 when he was diagnosed. In march he will be 71. I wish you all the best and am glad you are here to talk about it. Lol..a good attitude certainly helps get you thru some tough times along with prayer and faith. I wish you the best.
michelle
Hi Michelle,
Glad to hear your Dad is doing well. Very encouraging indeed. I have heart issues too so I'm on Plavix as as well. This time, my cariologist and the team feel it's worth the risk to stay off of it for a week and just take 81mg of aspirin. Surgery and chemo with heart issues is delicate at best but I think they got it under control."T"
0
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