Checking in -- More fun on the horizon

Mikemetz
Mikemetz Member Posts: 465 Member

I've been reading CSN on and off for the past several months, but have not posted since we lost Pat (aka, 'Longtermsurvivor'). Part of it has been that my ORN continues to be a problem, even after a left jaw resection last May.  The latest is that I am scheduled in June to have some bone and other tissue taken from my left arm to plug the gap made by the new ORN.  The gift that keeps on giving, radiation therapy, is staying true to its promise.

Just wanted you to know that I'm still with you, just taking some time off to get my head in the right place for the next round of this ****.  I have great doctors, great support, and the best caretaker (my wife Terry) that anyone could ask for--so I know I'll get through this in good shape.

Right now we are just enjoying two weeks on the beach at Cape San Blas, FL, before we go home and really gear up for this next round of fun and games in Cancer World.

Mike

 

 

Comments

  • hwt
    hwt Member Posts: 2,328 Member
    Mike

    So sorry to hear that the ORN is still causing you issues. Sounds as if you and your wife have learned one thing well and that is to take advantage of good days by vacationing. I have tried to do same but am writing this from recliner in my hospital room. You may recall I had fibula flap Jan 2012 then titanium removed 2014 then pectoral flap then 2015 fibula removed. tissue fell apart with pectoral flap so still working to resolve fistula. Making progress then bam, cellulitis again. Dr did not feel in my best interest to be hospitalized so attempted drugs at home. Moved up to include eye swelling shut so here I am. Much improved today. Is new ORN on right? What type of recovery is anticipated? Glad you have a good team working with you. I will include you in my prayers.

    Candi

    ps just yesterday I had a question had me thinking of Pat. I didn't even post it because I felt only he could answer it. Miss him

  • tommyodavey
    tommyodavey Member Posts: 727 Member
    hwt said:

    Mike

    So sorry to hear that the ORN is still causing you issues. Sounds as if you and your wife have learned one thing well and that is to take advantage of good days by vacationing. I have tried to do same but am writing this from recliner in my hospital room. You may recall I had fibula flap Jan 2012 then titanium removed 2014 then pectoral flap then 2015 fibula removed. tissue fell apart with pectoral flap so still working to resolve fistula. Making progress then bam, cellulitis again. Dr did not feel in my best interest to be hospitalized so attempted drugs at home. Moved up to include eye swelling shut so here I am. Much improved today. Is new ORN on right? What type of recovery is anticipated? Glad you have a good team working with you. I will include you in my prayers.

    Candi

    ps just yesterday I had a question had me thinking of Pat. I didn't even post it because I felt only he could answer it. Miss him

    ORN

    Hi Mike,

     

    That really sucks having the radiation come back and bite you.  You and I had the same cancer so whenever you post something it always interests me.  Now I'm wondering if mine will do the same as you.  Our MEC has a good record of not coming back as long as it had clear margins and was low grade.  But now the treatment seems worse than the disease. (almost)

     

    Are you going to do the HBO treatments before and after?  Just curious if they really help or not.

     

    I wish you the best in recovery.

     

    Tom

  • wmc
    wmc Member Posts: 1,804
    Sorry to hear the ORN problems...

    Mike sorry to hear about the ORN. But glad you posted and are having some vacation before the "next round". Konw you are always in my prayers and thoughts.

    Bill

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Enjoy...

    Sorry for the continued crap you're going through...

    That area is awesome.., my wife and I go to St. George Island occasionally.., Forgotten Coast..

    NEGU friend....

    Never Ever Give Up...

    ~John

  • Mikemetz
    Mikemetz Member Posts: 465 Member

    ORN

    Hi Mike,

     

    That really sucks having the radiation come back and bite you.  You and I had the same cancer so whenever you post something it always interests me.  Now I'm wondering if mine will do the same as you.  Our MEC has a good record of not coming back as long as it had clear margins and was low grade.  But now the treatment seems worse than the disease. (almost)

     

    Are you going to do the HBO treatments before and after?  Just curious if they really help or not.

     

    I wish you the best in recovery.

     

    Tom

    Doubts about HBO

    I've had 50 HBO dives, with little to show for them.  A waste of time, in my opinion.

    Mike

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Skiffin16 said:

    Enjoy...

    Sorry for the continued crap you're going through...

    That area is awesome.., my wife and I go to St. George Island occasionally.., Forgotten Coast..

    NEGU friend....

    Never Ever Give Up...

    ~John

    NEGU

    We never give up, but each new battle is harder than the last.

    Mike

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    Ding ding

    Next round in the ORN battle. Thank you very much for the update, Mike. When I met Steve he mentioned your sharing the battles with ORN are such a gift. Fortunately, ORN is a low percentage side effect but very serious. Any surgery lasting half a day or more with shifts of OR staff is a very big deal. It's great you have the chance to really relax and rested up. Steve looked tremendous only half a year post his surgery; I wish you the very best. Don

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    donfoo said:

    Ding ding

    Next round in the ORN battle. Thank you very much for the update, Mike. When I met Steve he mentioned your sharing the battles with ORN are such a gift. Fortunately, ORN is a low percentage side effect but very serious. Any surgery lasting half a day or more with shifts of OR staff is a very big deal. It's great you have the chance to really relax and rested up. Steve looked tremendous only half a year post his surgery; I wish you the very best. Don

    Low percentages

    I wish I knew enough about probability statistics to estimate the odds of someone going through what I've gone through.

    Cancer>Base of tongue cancer (non-smoker)>MEC>HPV->ORN>double cataract surgery (from the steroids during rads)>mandibular resection>and now a radial flap.

    But, there is one statistic that I have managed to avoid becoming a part of...I'm still alive, and that's all that counts 6+ years later.

    mike

     

  • MrsBD
    MrsBD Member Posts: 615 Member
    Mikemetz said:

    Low percentages

    I wish I knew enough about probability statistics to estimate the odds of someone going through what I've gone through.

    Cancer>Base of tongue cancer (non-smoker)>MEC>HPV->ORN>double cataract surgery (from the steroids during rads)>mandibular resection>and now a radial flap.

    But, there is one statistic that I have managed to avoid becoming a part of...I'm still alive, and that's all that counts 6+ years later.

    mike

     

    Stayin' Alive.      

    Stayin' Alive.         

    That's the goal Along the way there are many challenges so I guess that's why they call us "survivors". I wish you the best in your next challenge. Now if it would only take place on a beautiful tropical isle somewhere!

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Mike

     

    We all need time off no matter what it is. I just spent 4 days camping with my grandson at an outdoor retreat for home schooled children. I had a great time and was out of range of any Cell phone or Computer that made it even better. Will continue to keep praying for you my friend

     

    Tim

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hey, Mike, good to hear from

    hey, Mike, good to hear from you.  i'm glad you are enjoying yourself before revving up again.  sorry you are having so many damn problems.  you're right, radiation never seems to stop giving.  i hope you are well rested and strong for the fight coming up.  sending you good thoughts and positive mojo.

    dj