What did you say?

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  • alligatorpointer
    alligatorpointer Member Posts: 131
    fishmanpa said:

    I Hear Ya.... hopefully!

    Thanks Denis,

    From what I've read, you're an exception. My reality may be much different as the unknown primary warrants a more extensive field of radiation. I know the left side of my neck where the tumors were located will get a 70 dose of rads (I don't know the technical jargon for that). Other areas will get less depending. They will be hitting my entire neck and head but will spare my larynx. I'll get more details Wednesday at the dry run. 

    I'll be seeing my MO on Friday and I will discuss the chemo at that point but one of the common side effects is ringing in the ears and loss of hearing. I'm not too happy with that. I don't know if there's an alternative drug for me. Because of my cardiac issues, they have to be very careful as chemo drugs are very hard on the heart. 

    Thanks for the encouragement. Time will tell what my new abi-normal will be.

    "T"

     

    hearing & voice concerns

    I posted this a little while ago in a thread on "Cisplatin" ... but thought I would repeat it here in case you are checking this thread instead , Mark ...

    "T" ,  my son also received the 7 weekly Cisplatin chemo txs concurrent with the rads.  He completed treatment in Sept. 2012 and does not seem to have suffered any hearing loss or tininitis from it.  It was explained to us that when the Cisplatin is given one day a week during 7 weeks of rads, that it is a low dose of Cisplatin and its purpose is to weaken the tumor so that the rads are better able to destroy it.  When used in that way, Cisplatin is given at a more tolerable lower dose (with less side effects) and only used to assist the Rads (i.e. rads are the primary treatment modality and chemo is only secondary).  My son's rad onc was adamant that the Cisplatin be started at the beginning of the first week of rads because the rads do not work as well if the low dose Cisplatin has not been used to weaken the tumor.  My son's tumor was on his left false vocal cord (ary-epiglottic fold).  His voice seems strong and normal now, even though he was only able to manage a weak whisper in the final weeks of treatment and for several weeks after.  He did not have the "loss of ability to sing" concerns because his llivihood does not depend on his voice although he does play guitar and has been in several 'garage bands' with friends.  His singing voice has always been merely adequate ... never high quality like yours.  His speaking voice certainly sounds fine to me ... exactly like himself ... a source of much joy for me to hear when I speak to him by phone.  I stayed with him as his caregiver while he went through treatment, but my own house is a long distance away ... so now that he has NED status, we only keep in touch  by phone.   He has mostly been spending all his free time skiing ... so far he has been able to ski 40 days this winter.  The desire to recover enough post-tx to get out on the slopes this winter was a powerful motivation for him to regain his physical fitness ... and he did it.    "T", you also have some powerful motivations and from reading your posts you have great inner strength.  You have what it takes to survive and thrive.  Stock up on what you need onhand to help you with some of the things you can try to control ...  Mugard and other mouth care tips members of this forum have shared as helpful in avoiding mouth sores... ointments and creams to apply for exterior skin burning and redness ... pain control meds your doctors can provide if you keep them aware of when you need some numbing... all those things in the SUPERTHREAD that can pave your path to get through this.  Then try to relax as best you can and let those who care about you do some of the heavy lifting. 

  • Duggie88
    Duggie88 Member Posts: 760 Member
    T

    They told me after surgery and radiation that whatever didn't return in a year, chances are I won't get it back. Trust me, they were wrong it has been three years and my voice is still making a comeback. I also had left shoulder issues due to having muscle damage from surgery. I couldn't even carry a gallon of milk and had limited use. But, along with neck massages for edema I also had physical therapy for the shoulder 3 times a week for about 6 months. The shoulder came back and like I said the voice is still making progress. I understand that a singing voice is far different than a speaking voice but my friend, I say give it time and exercise it within reason without over doing it, along with that positive attitude you will be back on stage before you know it.

    Enjoy the day

          Jeff

  • Duggie88
    Duggie88 Member Posts: 760 Member
    NJShore said:

    Listening!

    T,

    I am listening as I write, beautiful music..  and I can see why you are so very nervous about all the impacts you potentially are facing. It is scary, it sucks, it's a rotten thing to do to nice people, and it's not fair. It hurts us all. Don't forget though, God gave you more than one gift, and you can perservere. Although it might not have been in your plan, you can.

    It's not going to be easy, and your fight is great, you have the gumption to get through this and fight this so well. You have been amazing in all you've gotten through so far. It's that same fight that doesn't want to let go of anything you have, to succumb to Jack. And god willing, with your fight and strength you won't loose anything, but you might need to make some adjustments as you get through this. Pick your battles, focus on what you can do, fight Jack. Don't waste your energy trying to get back to home plate, while you are headed to second base. Concentrate on Second base.. get through the treatment. Then heal. Then put yourself back together. It's amazing what energy it will take, and what time it might take, but if you want it bad enough - you'll get it back and make it ok - because dear friend, that's who you are. That's what you do.

    Leave the worrying to us, and we will be there for you..  and I look forward to your song, maybe about a new lease on life :)

    Hugs,

    Kari

    ps - it's ok to be scared, who wouldn't be.. but look at all these great people who have made it to a great place on the otherside. You'll be surprised how fast it will go once you get started. You'll be done before you know it.

    WOW

    Kari..........well stated,  I should have read all the posts before I responded to T's concerns.

     

    T..............listen to Kari

  • phrannie51
    phrannie51 Member Posts: 4,716
    fishmanpa said:

    Desperate Man

    Throughout my music career I had the opportunity to perform with some amazingly talented musicians and artists. I've had the honor to play on several projects through the years but never had I ever done my own project. It was ne of those things I would do "someday". In 2010 I asked for a raise at work. My boss hemmed and hawed and then said "Why don't you record a CD. Do what you want to do and I'll even make your product." Knowing the value, I accepted that offer. The result was "A Child of Lir", released in Feb. of 2011. It's a collection of originals, covers and traditional pieces that are dear to me. 

    The first cut, "Desperate Man", was written 5 or so years ago during an especially difficult time in my life. I had gone through the heart surgery just months before and had resigned from my position as Creative Arts Director at a rather large church. I was truly in a dark place and was reaching out for God's hand to guide me through. It's funny, I've touched more people outside of ministry with that song then I did in the church.....anyway....

    As time went on, life began to get better. I was healing both physically and mentally. There came a time when I didn't perform the song as much.  I just didn't feel "desperate" anymore. Lately however, the feeling has returned but in a different capacity. Thus my post today.

    You can take a listen at http://www.myspace.com/markt/music/songs/a-child-of-lir-80020561  There are other cuts from the CD there as well :) 

    "T"

     

    Finally!!! I got to listen to your

    I got to listen to your music!!  No sound on the home computer, so I thought "ok, I'll listen at work"...ah, but then got there and saw it was at MySpace....that's a no no there.  So......yesterday I decided enough was enough on the no sound at home, and got busy working on that.  Done deal!  I LOVE your voice.......and you can play your guitar like nobody's business...I am so SO impressed.

    Thanks for the lift.......I played music while I surfed the net.

    p

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    Finally!!! I got to listen to your

    I got to listen to your music!!  No sound on the home computer, so I thought "ok, I'll listen at work"...ah, but then got there and saw it was at MySpace....that's a no no there.  So......yesterday I decided enough was enough on the no sound at home, and got busy working on that.  Done deal!  I LOVE your voice.......and you can play your guitar like nobody's business...I am so SO impressed.

    Thanks for the lift.......I played music while I surfed the net.

    p

    Awww...

    Thank you P!

    Thank means alot :) Not bad for someone who retired from the business for 15 years eh? ~lol~ MySpace is the only place you can listen to entire cuts. Everywhere else just plays clips.

    "T"

  • rachel12yrsuv
    rachel12yrsuv Member Posts: 435
    fishmanpa said:

    Do you remember?

    I have some vague memories of my Great Grandparents. They came to the United States from Russia in the early 1900's. My Pop Pop (my Mom's Dad) was about 6 years old when they arrived. I'm named Mark after my Great Grandmother Martha. I don't recall very much other than some images in my mind of their faces. I do recall them speaking in a launguage I didn't understand. Turns out they were speaking Yiddish! So here I was, this little boy, hanging out with my Yiddish speaking Russian Great Grandparents for a great deal of time as my parents worked and they babysat me. 

    So... picture this.... My Mom takes me to the doctor and I have to get a shot. I apparently had a fear of needles. She tells me I would get this determined look in my eyes and say with a Yiddish accent "I don't vant it... no... no.. no... I don't vant it!" A five year old little boy sounding like an old Jewish guy! The doctor would just laaaugh! 

    Fortunately I overcame my fear of needles when I was around 9 years old or so as I suffered from constant sinus infections and ear problems. Turns out I had allergies. I was admitted to the hospital and had scratch tests done and those two dozen or so needles in each arm just under the skin with things I could be allergic to. I was like a human pin cushion. Then it was several years of allergy shots. I still don't like needles but I'm not afraid any more. 

    So now... facing this? I feel like that little 5 year old...  "I DON'T VANT IT!.. I DON'T VANT IT!" But like that 9 year old boy, I have to put on a brave face, stick out my arm and say "Go for it!". I don't like it nor do I want to do it but I have to do what I have to do to get better. 

    Truly, from the bottom of my heart, thank you everyone for your encouragement, kind words and honesty. You're my cyber brothers and sisters in arms. I appeciate it more than words can say. First things first. Get through this treatment. One day at a time. Then I'll deal with the aftermath. 

    Oy Vey...


    "T"

    T,
    What can I add that hasn't

    T,

    What can I add that hasn't already been said by apparently some really smart people. When I posted about my mountain and how steep the climb, you were right there as positive as can be telling me I will make, the odds are really against me but I will fight.

    Don't let what thety tell may or will happen get you down, first they have to tell you to cover their butts, but they don't know Gods plan for you, or what and how you spread His message, you do. In your heart, in your soul you can hear his voice telling you it'll be alright, reach out and trust Me and I will protect you! You know T, trust Him!

    I lost my hair in treatment, I had hair to my butt and an 80's girl so hair is my world, my rad onc made me take off my wig and he took a picture of my bald head and said my hair would not grow back. I was 29, what do you mean, how humuliating that was. 6months later with hair grown to about.1 or two, I wore my wig and when his was all done I said go get your camera, he said why? I took off my wig and said to take a picture of this to show your class, don't ever tell a 29 yr old woman her. Hair won't grow back if you don't know for sure! He laughed, got his camera and took picture.

    You know the moral here, he didn't control that, nor did i , God did!

    BELIEVE!

    I am praying when all said and done, you are spreading your message the way God intended you too!


    Rest your worried mind friend,

    Rachel
  • fishmanpa
    fishmanpa Member Posts: 1,227 Member

    T,
    What can I add that hasn't

    T,

    What can I add that hasn't already been said by apparently some really smart people. When I posted about my mountain and how steep the climb, you were right there as positive as can be telling me I will make, the odds are really against me but I will fight.

    Don't let what thety tell may or will happen get you down, first they have to tell you to cover their butts, but they don't know Gods plan for you, or what and how you spread His message, you do. In your heart, in your soul you can hear his voice telling you it'll be alright, reach out and trust Me and I will protect you! You know T, trust Him!

    I lost my hair in treatment, I had hair to my butt and an 80's girl so hair is my world, my rad onc made me take off my wig and he took a picture of my bald head and said my hair would not grow back. I was 29, what do you mean, how humuliating that was. 6months later with hair grown to about.1 or two, I wore my wig and when his was all done I said go get your camera, he said why? I took off my wig and said to take a picture of this to show your class, don't ever tell a 29 yr old woman her. Hair won't grow back if you don't know for sure! He laughed, got his camera and took picture.

    You know the moral here, he didn't control that, nor did i , God did!

    BELIEVE!

    I am praying when all said and done, you are spreading your message the way God intended you too!


    Rest your worried mind friend,

    Rachel

    You know you know

    Hi Rachel,

    Thank you for your encouragement. The thing is, in the midst of my "moment" I knew I was in His hands. As hard as we try to stay in His light and peace, our humaness takes over and we allow ourselves to sink into the depths of darkness.  Perhaps we need to hear it from someone else to awaken from the bad dream and realize the truth.

    I'm at peace with everything. I'm as ready as I'm going to be to do this. I have a good team and I'll be at the best facility in the country to treat me. I'll take it one day at a time and deal with the bumps in the road as they come up. At least for now, I have good shocks ;)

    Thank you again for your post and your prayers.

    "T"