Where have I been? (followup post post-treatment)

JAL23
JAL23 Member Posts: 88
in Head and Neck Cancer #1

Hi all,

You may remember my previous post where I gave weekly updates during treatment. I had an early response scan during my last week of treatment, which came back showing nothing particularly alarming. Shortly after that post, I had my bell ringing ceremony at ProCure and things got a bit worse before they got better.

For about three weeks after my last radiation, I was throwing up almost constantly. It might have been one of the most miserable experiences of my life. Thick, goopy mucus just kept coming up, as I think my throat was trying to save itself. In fact, it was this throwing up that motivated me to get as far away from my weight gain shakes as possible. The milk and powder just amplified the miserableness of the vomiting.

Then, about three-four weeks out, this very suddenly stopped!

THEN, about five to six weeks out, salt came back in a very intense way! WOW! I COULD TASTE FOOD!!! It didn't matter that I couldn't taste much else than salt. Suddenly, soups and breads and other soft foods had some semblance of seasoning. I remember running out to Taco Bell (of all the crap food I could have picked!) and it didn't matter how bad it burned - it TASTED like something!!! :)

It was around that time that I got some bad news from my ENT at MSK - the latest CT showed another mass developing right where the original was. Despite being on the PET scan as dark, the mass very clearly had grown, and I was given a 90% likelihood that the PET was wrong and the lump was cancerous. I was in tears - how could this be with all of the treatment I received? Either way, they were going to make one more attempt at saving my life. Surgery was planned to remove the mass, and they were going to OVER-RADIATE the tissue surrounding it, using some direct method while the skin was open. Apparently very few hospitals have the equipment to do this. The hope would be that any damage I would receive from being over radiated would be less severe than crossing our fingers with clear margins. I had to sign paperwork that I understood the risks, and I was crying right to when they put me under. I kept thinking in my head that this was going to be it, and that I gave it my best shot and it just didn't work. I'm dead. I'm finished.

I was woken up from anesthesia with news - the lump they had removed showed no initial signs of cancer. My rad onc said not to radiate unless there was some proof that there was cancer. The surgical team had even looked all over to see if anything looked cancerous under the skin. No drain, no three night hospital stay in pain. I was told I could go home as soon as my vitals came into normal range. What an existentially surreal experience! I will never, NEVER forget that drive home from manhattan with my wife, mom, and father in law. We were all shocked. Later we found out from the full pathology that it was a lymph node missed in the original dissection that just went crazy from all the treatment. I live with my ghost after all of this.

Life has been fairly calm since. I deal with the same old issues as before - stiff neck, a little trouble swallowing, dry mouth, and some sores on my neck that still wont heal. I have weaned off of everything except the gabapentin (five more days for that). I went back to work yesterday for the first time. Here's the best part:

Taste is almost FULLY back! Sweet is sweet, sour is (mostly) sour, meat has umami, and bitter is a bit iffy. I have had burgers, steak, sushi, sandwiches, Italian food, pizza, etc. Some things still burn a bit, like tomatoes. Other things don't taste quite right, like chocolate. I've been playing a game with my wife where I can guess the flavor of a fruit juice fruit snack with my eyes closed, and I can do it 100% of the time now. Food is pleasurable now. I need a little sip of water now with each bite, but hey, I probably should have been drinking that much water anyway!

My followup scan is in June, after which, I hope to officially join the "survivors" club. And who knows? Maybe before I know it I'll be at year 6 like Matt.

Sincere love to you all for all of your thoughts and help.

John

Comments

  • Jbrooks
    Jbrooks Member Posts: 43
    #2
    I am so happy for you!  Thank

    I am so happy for you!  Thank you for being so open to share all your experiences as you travel down this journey we are all on.  You have helped me and I know others with your candidness and at times you made me laugh  so hard with your humor...  I will keep you in my prayers for your June scan.  (My first ct scan will be in May.)  Thanks again and welcome back to the group!

  • Frances_S
    Frances_S Member Posts: 54
    #3
    Happy to hear....

    Hi John,

    That's wonderful news! So happy to hear you are doing well. You will be in my prayers for you June scan.

  • Aanchal Kanodia
    Aanchal Kanodia Member Posts: 20
    edited March 2018 #4
    Happy to hear your story! 

    Happy to hear your story! 

    I m comparitively new here and haven't been following your recovery. You mentioned constant puking, my mother who has received 7 of her radiations has got this puking problem already. And now she has started smelling of foul smell in everything she eats and drinks. Could you give us some insights ? 

    Thanks 

     

  • Dean54
    Dean54 Member Posts: 160 Member
    edited March 2018 #5
    Been wondering about you JAL23

    I had almost posted on here asking if anybody had heard about you, you must have read my mind. That's great about your palate and I envy you on that one. I am way ahead of you on recovery and didn't have near the problems you or most people who go thru this journey do and can actually taste food even if it still repulses me. I sure do miss eating out!

    Good to hear from you and hope everything keeps improving for you.

  • katlou
    katlou Member Posts: 83 Member
    edited March 2018 #6
    So happy for you

    I am so happy that to hear that things are improving so much for you.  I can't even imagine the fear when you thought your cancer was returning.  You have been so helpful to us with your journaling of your treatment and progress.  I am glad to hear that you have been able to return to work and I will keep you in my prayers for your scan in June.

  • lorijeannj
    lorijeannj Member Posts: 56 Member
    #7
    Glad to hear all is well.

    Glad to hear all is well.

    Was looking for you on this site the other day and nothing.

    I thought perhaps things were so well you were partying it up in Atlantic City or things weren’t that great that you were gambling your life away in Atlantic City.

    Thanks for all your sharing.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #8
    where indeed

    JAL23,

    We last communicate on November 13, 2017 and you were up to 10 doctors and you thought you (might, maybe) have it worse off than most H&N members.

    The results are coming in (this post) and you are more like better than the average (normal) H&N member.  I would be  happy to sit down with you and have a DQ Peanut Buster Parfait (I like them very, very much).

    Matt

    pb

  • JAL23
    JAL23 Member Posts: 88
    #9
    Jbrooks said:

    I am so happy for you!  Thank

    I am so happy for you!  Thank you for being so open to share all your experiences as you travel down this journey we are all on.  You have helped me and I know others with your candidness and at times you made me laugh  so hard with your humor...  I will keep you in my prayers for your June scan.  (My first ct scan will be in May.)  Thanks again and welcome back to the group!

    Thank you, Jbrooks.

    Thank you, Jbrooks.

    It’s been a rough treatment, but apparently I am tougher than I thought. Thank you for the good wishes, and I will be thinking the same for your scan in May.

    John

  • JAL23
    JAL23 Member Posts: 88
    #10
    Frances_S said:

    Happy to hear....

    Hi John,

    That's wonderful news! So happy to hear you are doing well. You will be in my prayers for you June scan.

    Thank you! I really

    Thank you! I really appreciate it.

  • JAL23
    JAL23 Member Posts: 88
    edited March 2018 #11
    Aanchal Kanodia said:

    Happy to hear your story! 

    Happy to hear your story! 

    I m comparitively new here and haven't been following your recovery. You mentioned constant puking, my mother who has received 7 of her radiations has got this puking problem already. And now she has started smelling of foul smell in everything she eats and drinks. Could you give us some insights ? 

    Thanks 

     

    Hi Aanchal,

    Hi Aanchal,

    I don’t know how much help I will be, unfortunately. In my case, I didn’t start even feeling the rads until about 10-15 treatments in. When I say really feeling it, I mean the peak of the uncomfortableness and pain. The gagging and vomiting also didn’t kick into full gear until after my treatment was over.

    Smells were terrible for me. Things that should have smelled right smelled bad. Things that I normally would love to smell (cologne, perfume, etc.) were the most awful thing in the world. I think it was my brain compensating for a lack of taste..... or maybe also the cisplatin? Strangely enough, people’s breath and body oder were amplified times 1,000 (or maybe everyone I encountered just smelled and hadn’t brushed their teeth? :) ) Either way, this subsided fairly quickly once my taste came back. I am happy to report that food and perfume and my wife smell wonderful to me, again.

    I do hope your mom finds the strength to get through treatment despite early side effects, and she is in my thoughts.

    John

  • JAL23
    JAL23 Member Posts: 88
    edited March 2018 #12
    Dean54 said:

    Been wondering about you JAL23

    I had almost posted on here asking if anybody had heard about you, you must have read my mind. That's great about your palate and I envy you on that one. I am way ahead of you on recovery and didn't have near the problems you or most people who go thru this journey do and can actually taste food even if it still repulses me. I sure do miss eating out!

    Good to hear from you and hope everything keeps improving for you.

    Hey Dean,

    Hey Dean,

    I figured the universe owed me my taste buds after dumping all this **** right in my lap. :)

    Kidding aside, we are all H&N but each of us has our own path to walk down. I had Dr.s tell me I wouldn’t be eating solid foods until August. Yesterday we had ribeyes on the BBQ (even if it is freezing here in NJ still). The moment sweet came back might’ve been one of the most spectacular and memorable moments in recent memory. Everything everyone says about it coming back like a light switch is correct - it won’t be this gradual change from not tasting or awful taste to normal. Boom, it’s back online!

    I look forward to your post when that happens for you. Food will be a wonderful thing again.

  • JAL23
    JAL23 Member Posts: 88
    #13
    katlou said:

    So happy for you

    I am so happy that to hear that things are improving so much for you.  I can't even imagine the fear when you thought your cancer was returning.  You have been so helpful to us with your journaling of your treatment and progress.  I am glad to hear that you have been able to return to work and I will keep you in my prayers for your scan in June.

    Hi katlou,

    Hi katlou,

    Thanks for the prayers.

    It was posssibly the most frightening experience of my life. Every day (even at work) feels like a dream. I don’t mean “dream” as in “wonderful”, but literally a dream. I am going to wake up in that MSK bed with a tube in my neck and an unfortunate amount of radiation delivered to my neck. I am doing my best not to wake up from this dream and hope that never happens!

    I hope the journaling was helpful and hopefully helps future H&N members. It was therapeutic for my mind during treatment. Ironically, I had to muster up the courage to login and write this update post, which clearly took me a little while. Enjoying the calm after the storm I guess.

    Thanks again.

    John

  • JAL23
    JAL23 Member Posts: 88
    #14
    lorijeannj said:

    Glad to hear all is well.

    Glad to hear all is well.

    Was looking for you on this site the other day and nothing.

    I thought perhaps things were so well you were partying it up in Atlantic City or things weren’t that great that you were gambling your life away in Atlantic City.

    Thanks for all your sharing.

    Hi Lorijean,

    Hi Lorijean,

    I apologize for my absence - logging back in post treatment had a lot of anxiety attached to it for some reason.

    We are going to do AC in a few weekends, and then maybe even a trip to Vegas if the stars (preferably 7s) align. So it could still happen! It’s either that or run off to Secrets in Jamaica to a room with a walk out pool and bottomless drinks. Aaaaaaahhhhhhhhhhhh.

    Thank you again for your support during treatment. I will update as things progress.

    John

  • JAL23
    JAL23 Member Posts: 88
    #15
    CivilMatt said:

    where indeed

    JAL23,

    We last communicate on November 13, 2017 and you were up to 10 doctors and you thought you (might, maybe) have it worse off than most H&N members.

    The results are coming in (this post) and you are more like better than the average (normal) H&N member.  I would be  happy to sit down with you and have a DQ Peanut Buster Parfait (I like them very, very much).

    Matt

    pb

    Hi Matt,

    Hi Matt,

    It is great to hear from you. I was really looking forward to your reply to this post (imagining it was good news) while I was still undergoing treatment. You truly are the poster child for a successful H&N member, and I look forward to hopefullly following in your footsteps. You do this community a great service by being active And supportive.

    I was pleasantly surprised in how quickly taste and swallowing improved. When it comes to cancer, I am realizing being normal and average is a good thing, so I am now happy where I am at in recovery at the moment. Greatful to be alive, to be working, eating, and posting to this forum. All nice and normal things to do.

    That DQ parfait looks amazing. I showed my wife the picture and now we might need to make a trip to our local DQ. She’s partial to the chocolate covered strawberry blizzard (despite it no longer being on the menu) but I will have a peanut buster in your honor. If you ever find yourself wandering around NJ, I’d be more than happy to treat.

    John

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