NEW BUT LATE UPDATE

luv4lacrosse
luv4lacrosse Member Posts: 1,410 Member
edited March 2014 in Head and Neck Cancer #1
Good morning all!! I am finally home recovering from my surgeries. Yes, surgeries with an S. Nothing comes easy. My original plan was to have one surgery on Monday August 9th to extract the oral cancer and then the neck dissection. While driving home from work on Friday the 7th, my mouth filled with blood, and this continued for about an hour. after much reflection on what to do, (stupid by me) since my doc said if let go i could have bled to death, I made my way to the hospital er. I was admitted and the bleding finally stopped. I wake up saturday morning thinking I will be discharged when I sneeze and the bleeding started again. I was taken to the OR an hour later and the doc cauterized two broken veins in the soft pallate of my mouth and he also closed the large tumor on my right tonsil that ruptured.Sunday afternoon my doc let me go home to see my family and to return early monday morning for my panned surgery. Off to the OR I go and when I wake up I find out it is 3 pm on Wednesday on a vent. Turns out that after 7 hours of cutting on my mouth on Monday, the doc felt I had enough and he wanted to compare the Frozen Samples where they indicated NED versus the final path report. As luck would have it, he got it all and being on the vent asleep allowed for me to recover for another 9 hours of neck surgery on Friday. Wednesday night was rought coming out of the anesthesia and Thursday was so bad with aheadache and vomiting I beegged them to put me back on the vent. Off to the OR on Friday morning I go. When I awoke in the OR i was screaming in pain from my right shoulder and beacame a little violent according to one of the residents. Turns out I also sufferd a severe muscle spasm in my shoulder that caused me to be in all of this pain. Anyway, very long story turned short, the final outcome is 100% NED anywhere, and all of my nerves and muscular / vascular structures are intact. I was sent home on Monday with both drains removed and no feeding tube as I am eating and drinking fine.

Man, what a journey. Ihope all of you are doing well. I am going back to sleep. I will check in again later.

STAY POSITIVE, Now I can finally join the others here giving advice to the newbies.

BEST!!

Mike

Comments

  • johnlax38
    johnlax38 Member Posts: 136
    #2
    Congrats Mike. I wish you
    Congrats Mike. I wish you the best and hope you can help us noobs!

    I'm an ex LAX player my self, crease defense, wing defense and long pole middy...careful I may give you a love tap! :)

    Cheer
  • Kimba1505
    Kimba1505 Member Posts: 557
    #3
    OMG!! What a story!
    Mike,
    I have been watching to hear from you or a family member. Man, you went through it...BUT your outcome is AMAZING!! NED...awesome. Off the feeding tube...awesome. Drains out already...awesome!! Muscles spasms...very painful...yikes...like you needed that.
    Great news. ARe you done? Is the plan to follow up with chemo radiation.
    Mark's surgery result was clean margins...but they recommended "throwing the book" and he did chemo and radiation. 3 weeks done today.
    Son off to college yet??
    Kim
  • RushFan
    RushFan Member Posts: 224
    #4
    Kimba1505 said:

    OMG!! What a story!
    Mike,
    I have been watching to hear from you or a family member. Man, you went through it...BUT your outcome is AMAZING!! NED...awesome. Off the feeding tube...awesome. Drains out already...awesome!! Muscles spasms...very painful...yikes...like you needed that.
    Great news. ARe you done? Is the plan to follow up with chemo radiation.
    Mark's surgery result was clean margins...but they recommended "throwing the book" and he did chemo and radiation. 3 weeks done today.
    Son off to college yet??
    Kim

    Wow! Just Wow!
    Unbelievable story and the end result is great. You are a strong one!
    Inspiring to say the least.

    Continued success in healing to you...and all here.
    Chuck.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #5
    johnlax38 said:

    Congrats Mike. I wish you
    Congrats Mike. I wish you the best and hope you can help us noobs!

    I'm an ex LAX player my self, crease defense, wing defense and long pole middy...careful I may give you a love tap! :)

    Cheer

    LAX
    Nice!!

    My Sons play and I was president of out highschool LAX clubs and select teams. New to the sport, but love it.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #6
    Kimba1505 said:

    OMG!! What a story!
    Mike,
    I have been watching to hear from you or a family member. Man, you went through it...BUT your outcome is AMAZING!! NED...awesome. Off the feeding tube...awesome. Drains out already...awesome!! Muscles spasms...very painful...yikes...like you needed that.
    Great news. ARe you done? Is the plan to follow up with chemo radiation.
    Mark's surgery result was clean margins...but they recommended "throwing the book" and he did chemo and radiation. 3 weeks done today.
    Son off to college yet??
    Kim

    further treatment
    Meet with my doc next week to design the Radiation and Chemo plan. looks like i will start in 4 weeks or so. Son moves into the Fraternity hose on the 20th.

    Looking back now, paying the harder price up front makes me feel more secure about being NED going forward.

    How is Mark reacting to the Rads and Chemo? I have been told everyone reacts differently.

    Mike
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #7
    RushFan said:

    Wow! Just Wow!
    Unbelievable story and the end result is great. You are a strong one!
    Inspiring to say the least.

    Continued success in healing to you...and all here.
    Chuck.

    thanks
    Still trying to figure out how much stronger i will need to be. I am now convinced anything can change at any time.

    Best!!

    Mike
  • JUDYV5
    JUDYV5 Member Posts: 392
    #8
    Wow
    That was quite the experience. What a great outcome !!
  • Kimba1505
    Kimba1505 Member Posts: 557
    #9
    luv4lacrosse said:

    further treatment
    Meet with my doc next week to design the Radiation and Chemo plan. looks like i will start in 4 weeks or so. Son moves into the Fraternity hose on the 20th.

    Looking back now, paying the harder price up front makes me feel more secure about being NED going forward.

    How is Mark reacting to the Rads and Chemo? I have been told everyone reacts differently.

    Mike

    Did okay.
    Mark did okay with rads and chemo. He started on cisplatin and they had to switch him to carboplatin-taxol due to hearing loss. (Side effect of cisplatin).

    Mike, I feel very good about Mark's decision to do extensive surgery first. My thinking was you cut - you heal...it is pretty straight forward...radiation and chemo, to me, are more of a wild card as far as how one responds and what short term and long term side effects appear.

    Because Mark had so much removed surgically, the field of radiation could be cut down, hopefully preserving his perodid glands (sp?), the ones that make saliva. He is already getting taste back, skin is healed almost 100%, still stiff (radiation or surgery, not sure of the culprit), pesky sore in his mouth is causing some pain, back to work, working out, eats as if he has an appetite, feels stronger every day, PEG out on the 19th.

    He is feeling very optimistic.

    Stay on board as you move through the next phase...the final phase (post treatment) is not without its bumps, but we can discuss that as need be.
    Did you ever find out if you are HPV16+?

    Very happy for your sugical outcome...wishing you the best with chemo and radiation.
    Kim
  • Hal61
    Hal61 Member Posts: 655
    #10
    Wow
    Hi Mike, when I recently finished my neck dissection, one of the survivors here welcomed me to the "cutthroat cancer club," which I appreciated--and it gave me a laugh. I think you could start your own club bud, after going through an ordeal like that.

    I don't think you need to worry about being able to give noobs advice. Your amazing attutide in relating your surgeries reflects the best advice anyone can give on this board: take your medicine, perservere, and stay hopeful.

    I'm glad I wasn't there when you awakened with the shoulder spasm. I would've ran.

    The fact that your trial ended with a positive prognosis/report, makes everyone here very happy for you. The blitzkrieg has passed, and you still have some slogging to do, but you'll get through it because it's obvious you're a warrior.

    respect and prayers, Hal
  • miccmill
    miccmill Member Posts: 248
    #11
    Hal61 said:

    Wow
    Hi Mike, when I recently finished my neck dissection, one of the survivors here welcomed me to the "cutthroat cancer club," which I appreciated--and it gave me a laugh. I think you could start your own club bud, after going through an ordeal like that.

    I don't think you need to worry about being able to give noobs advice. Your amazing attutide in relating your surgeries reflects the best advice anyone can give on this board: take your medicine, perservere, and stay hopeful.

    I'm glad I wasn't there when you awakened with the shoulder spasm. I would've ran.

    The fact that your trial ended with a positive prognosis/report, makes everyone here very happy for you. The blitzkrieg has passed, and you still have some slogging to do, but you'll get through it because it's obvious you're a warrior.

    respect and prayers, Hal

    Wow!
    Mike, you really went through a tough ordeal.

    You sir, are one strong dude. I agree with the others, you have a great attitude.

    You've got some more to go through but, clearly, you're going to come out fine on the other end.
  • kimmygarland
    kimmygarland Member Posts: 312
    #12
    miccmill said:

    Wow!
    Mike, you really went through a tough ordeal.

    You sir, are one strong dude. I agree with the others, you have a great attitude.

    You've got some more to go through but, clearly, you're going to come out fine on the other end.

    Congratulations!
    On NED! What a journey you have had. So glad to hear you are feeling better and preparing for the next leg of the journey.
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #13
    Kimba1505 said:

    Did okay.
    Mark did okay with rads and chemo. He started on cisplatin and they had to switch him to carboplatin-taxol due to hearing loss. (Side effect of cisplatin).

    Mike, I feel very good about Mark's decision to do extensive surgery first. My thinking was you cut - you heal...it is pretty straight forward...radiation and chemo, to me, are more of a wild card as far as how one responds and what short term and long term side effects appear.

    Because Mark had so much removed surgically, the field of radiation could be cut down, hopefully preserving his perodid glands (sp?), the ones that make saliva. He is already getting taste back, skin is healed almost 100%, still stiff (radiation or surgery, not sure of the culprit), pesky sore in his mouth is causing some pain, back to work, working out, eats as if he has an appetite, feels stronger every day, PEG out on the 19th.

    He is feeling very optimistic.

    Stay on board as you move through the next phase...the final phase (post treatment) is not without its bumps, but we can discuss that as need be.
    Did you ever find out if you are HPV16+?

    Very happy for your sugical outcome...wishing you the best with chemo and radiation.
    Kim

    hpv+
    Yes, my pathology came back HPV+. Very scary this new way of getting head and neck cancer.
  • Kimba1505
    Kimba1505 Member Posts: 557
    #14
    luv4lacrosse said:

    hpv+
    Yes, my pathology came back HPV+. Very scary this new way of getting head and neck cancer.

    HPV
    Yes, I have yet to learn all the implications of HPV and H&N cancer as Mark and I move forward. But you know to have P+ has a better prognosis. This is good news.
  • lady4darknight
    lady4darknight Member Posts: 90 Member
    #15
    Glad it went well
    Mike,
    so glad it all ended well. I only hope I have your attitude on Friday when I have mine. Tell the son to study hard and play well. Where is he attending school? All the best.

    Debbie
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #16
    lady4darknight said:

    Glad it went well
    Mike,
    so glad it all ended well. I only hope I have your attitude on Friday when I have mine. Tell the son to study hard and play well. Where is he attending school? All the best.

    Debbie

    ATITUDE
    You will as you have allot to live for my friend.My son is attending Architectural Engineering at Kansas State Univ.

    "Control what you can and allow for others to help you when needed."

    I am praying for you.

    Mike
  • Pam M
    Pam M Member Posts: 2,196
    #17
    Wow
    Mike,
    The broken-vein-in-the-mouth was one of my "secret" fears during treatment. I had not heard of it, then a poster on the chat room here told me about it happening to him. I don't recall hearing of anyone else suffering this - sorry you had to. NOW you've got a good "war" story, if you didn't before now. So after this, some of the garbage to come will be a lot less traumatic, I'm sure. Do well.
  • Irishgypsie
    Irishgypsie Member Posts: 333
    #18
    Pam M said:

    Wow
    Mike,
    The broken-vein-in-the-mouth was one of my "secret" fears during treatment. I had not heard of it, then a poster on the chat room here told me about it happening to him. I don't recall hearing of anyone else suffering this - sorry you had to. NOW you've got a good "war" story, if you didn't before now. So after this, some of the garbage to come will be a lot less traumatic, I'm sure. Do well.

    On to the next chapter!
    Glad the surgery ended with success! As a Registered Nurse I also felt that if you can cut the tumor out go for it! I pretty much had the same thing Mark had. I think he is ahead of of me eating; but I can taste, eating pot pies, yogurt, pancakes, scrambled eggs. Went to a baseball game and tried some fried dough and ate some steak from a philly; had to wash it down with water but it went down. I also am getting the PEG removed next week. At the gym but luckily don't have to go back to work until November...Best of luck!

    Charles
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #19
    Pam M said:

    Wow
    Mike,
    The broken-vein-in-the-mouth was one of my "secret" fears during treatment. I had not heard of it, then a poster on the chat room here told me about it happening to him. I don't recall hearing of anyone else suffering this - sorry you had to. NOW you've got a good "war" story, if you didn't before now. So after this, some of the garbage to come will be a lot less traumatic, I'm sure. Do well.

    VEIN
    The vein surprised my Doc also. He sees tumor rupture on tonsils all of the time after a big biopsy. I can probably take some of the blame for the bleeding as the pain from the 3 spots he biopsied did not end up hurting all that bad. I prob. over did it with the food.

    time to change my old philosophy of "go big or go home" The new one is "go small bites or go to the OR."
  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #20
    Irishgypsie said:

    On to the next chapter!
    Glad the surgery ended with success! As a Registered Nurse I also felt that if you can cut the tumor out go for it! I pretty much had the same thing Mark had. I think he is ahead of of me eating; but I can taste, eating pot pies, yogurt, pancakes, scrambled eggs. Went to a baseball game and tried some fried dough and ate some steak from a philly; had to wash it down with water but it went down. I also am getting the PEG removed next week. At the gym but luckily don't have to go back to work until November...Best of luck!

    Charles

    next chapter
    My wife is an RN also. I trust her judgement and her means of communicating questions and fighting for my care when in the hospital. Your pictue suggests you are in pretty good shape. Did you ever lose a "critical amount of weight"?

    I was still powerlifting 4-6 days a week before I got ill and have lost 15 lbs in the last 6 days. I am logging all of my caloric intake, and even set an alarm last night for 3 am to eat one last time during the night. I told my Doc I did not want to come home with any type of feeding tube, but made promise to him that if my self feeding was not enough, I would acept a tube.

    Mike

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