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Yo-yo syndrome

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

Sometimes this forum just eats your guts out. We cheer for each other and when the yahoos are over, we cry for the rest of us. Then there is the purgatory of waiting for scan results. Emotions are pulled in every direction. What will it be today? Euphoria or depression? Long timers watch others come and go as the roller coaster ride proves too much for many rookies to cope with.

Then there is survivors guilt, or remorse. It is not "Why me? Why did I get cancer?" But "How come I'm still alive?" The ying and the yang of cancer. Or as Kelly Bundy would say, "The ping and the pong."

Anyway, keeping emotions in check is challenging. Even for us veterans who have been through alot.

Yesterday I recieved all my test results. Blood work excellent. Ct scans show soft tissue mets stable or smaller. MRI of full spine show there is no longer any epidural disease along my spinal cord.  The results are astonishing. I feel like I am getting off the floor after being hit by Rhonda Rousey. Completely stunned. I can't even cheer for myself. Yet. This will take a couple days to sink in. I was preparing to deal with new meds, more radiation, or whatever was needed to get me through this year. Like a chess game I was anticipating the next move before being taken down by a stronger player. I have not dodged a bullet but dodged a train.

How many times can I do this? It would have been so easy to just let go and expire in February. What I do know is that I'm not ready to go. I'm so glad that I haven't wasted my time worrying or waiting to die, but have worked hard to not just stay alive but to prosper. Now I will turn it up a notch. I can do better.

First, thank you all. Your support and faith in me sets a standard I will live up to. The "Poster Boy" is still going strong. Whether in prayers or karma, I've benefit from everyones encouragement, concern, and love. I need to include my health team at the Smilow Cancer Hospital (Yale/New Haven) for providing the medical care I needed. No one can do this alone. We do this together. There is strength in numbers. That's my story and I'm sticking to it. It is my hope to provide others with an example of what not giving up means. When that time comes and I have to let go, I'll know. I have learned from the toughest. Tex, Ron, DJ,Neal, Blkjak, Capt. Matt, Paula will be there to tell me when. Until then, LET'S PARTY!!!!!!!!!!!!

FLY. Fox loves YOU!!

 

 

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Ours is not to wonder why

Ours is just to do or die

Srashedb
Posts: 482
Joined: Dec 2013

Fox:

your test results are great; as we know, this disease is unpredictable and will follow strange and unique paths unlike other cancers.

this can take out DJ or Neil; it can be aggressive and bring down Tex or it can be random and unexoectedly steal our Ron.

it certainly sounds like you are a radiation responder; the radiation oncologist told us that some respond poorly and some fully. 

These last few weeks have been down ones with the loss of people we were rooting for; that makes your news even sweeter.

i guess you will have to make plans for longer than the summer of Fox

Sarah

 

I am alive
Posts: 316
Joined: Jul 2012

Pretty funny retort, Footstomper. Hear me chucking?

APny's picture
APny
Posts: 1948
Joined: Mar 2014

So well said, Fox. And I’m thrilled for your amazing results. It’s so nice to read good news.

I am alive
Posts: 316
Joined: Jul 2012

That should have been "chuckling," not "chucking"

Allochka's picture
Allochka
Posts: 871
Joined: Nov 2014

These results give hope to everyone. And hope, together with sense of humor, is one of the greatest weapons in this war we or our loved ones are fighting.

Fox, you are amazing! F...k Stage 4. I hate this disease, hate it because the man I love had it, hate it because wonderful people have passed recently, hate it because future will contain scanxiety, "what if" thoughts and some fear forever. 

So thank you very much for fighting hard and winning this hated disease... We all need these good news!

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

YAAAYYY FOXY DEAR!!!

 

Don't know if you believe, but obviously you are here for a reason..

and its not just to continue treatment and to fight cancer..

there's more..

then more...

Oh how I remember how low you sank some months ago.

I, for one, AM SO GLAD YOU ARE HERE!!

Sending you tons of HUGS!!!!!!!!!!!!!!

Jan

jason.2835
Posts: 337
Joined: Nov 2014

Fox,

I think a BIG part of the equation has to be the PERSON behind the fight... Your determination, your WILL to LIVE cannot be extinguished.  And I'm not just talking about being alive, but about ACTUALLY LIVING, man... You keep it positive and draw positive energy to you.  Don't discount that.  This is insanely good news.  Sounds like you'll be giving us advice for a very long time.  

- Jay 

Skagway Jack's picture
Skagway Jack
Posts: 221
Joined: Oct 2013

Jason,  Well said!  Good on ya Fox.  As I have said before, you the man!

 

Jack

angec's picture
angec
Posts: 923
Joined: Mar 2012

I always get excited when I see a new post from our foxy!  Good or bad, you always express the ups and downs so eloquently! Darn, I love the news you gave us today!  Keep on kicking it to the curb, ain't got no time for nothing but riding, playing and drinking beer!  You Da Man! We sure love you too!  ELF - Everyone Loves Fox!

 

Angela

Phredswife's picture
Phredswife
Posts: 162
Joined: Apr 2014

Yay . Awesome news! Keep up the good work. We all need you!SmileSmile. Hugs

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Outstanding!  Foxy, we have never met, but I feel like I know you better than some of my lifetime friends.  I was out on my morning mountain bike ride, where a lot of thoughts float through my head, and this morning, I was laughing with the mantra "Foxy loves you" in my mind.  I don't know why it was there.  I have gotten myself into the best shape I have been in over 10 years, and I guess I think about you and your situation, and mine, which is laughable compared to yours.  But last year was a kick to the floor and a wake up call for me, and I hope that NED is my best friend for life.  You are a tremendous inspiration, and I am glad to "know" you.  Congratulations on the great results. 

firedude21
Posts: 52
Joined: Sep 2014

I'm so happy for you. Keep up the good fight. 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

"What a long ,...strange trip it's been..."

By the way, I have a little extra karma to spread around. Just reach out a grab some. The supply seems to exceed the demand and is self replenishing.

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Summer of Fox indeed. Pizza and beer all around. 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Break out the champagne! Let's celebrate the TERRIFIC news that our dear Foxy has just shared.

Indeed this is a family, and only our members can understand the impact that everyone's good news - and sad news, has on us. It is amazing how attached I feel to all of you. I am still reeling from the two most recent losses, as well as our former losses. But for now, we celebrate the good news of our Foxy who has done so well in this, The Summer of Fox.

Fox, you are such an inspiration to us all - more than words can say. I am honoured to be part of such a loving and supportive group.

CHEERS!

Hugs,

Jojo

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Wow!! Fox, you are so tough!  Very happy that you results are so good. Keep going and keep on giving everyone here hope. 

The lasts weeks were the darkest on this forum since I joined about a year ago, you just reopen the lights!

Dave

Shecka1121
Posts: 114
Joined: Apr 2015

As a recent member I do not have all the history as some, but I sure learned early on that Fox was a strong support for many and when I read this I was so happy for him and the hope that it gives many people on this site.

Great news!

BDS's picture
BDS
Posts: 172
Joined: Aug 2012

Congratulations on your latest scan results, I am thrilled to hear that your health is improving. As I tell my co-workers “Every day I am on this side of the dirt is a good day!”  Fox, enjoy the rest of your summer. You and your wife should find a nice restaurant that overlooks a beautiful New England lake and order a beer and pizza with extra toppings.   To your improving health – Take care - BDS    

 

mrou50
Posts: 389
Joined: Mar 2013

As always Fox well put, you are an inspiration keep up the great reports.  The ups and downs are difficult I agree I stayed away from the site for a few days after Neil and Djinny's sad news I just felt like I could not take anymore for a while, but you news once again inspires me and reminds it is way to soon to give up now.

brea588's picture
brea588
Posts: 240
Joined: Jul 2012

HAPPY for you.  Wonderful news.  Now you can ride, play guitar anything you want!!!!   I will continiue to pray for you as always.  Love to you tooo!!!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I don't want to sound like I have super power when it comes to recovery. Side effects of votrient can be tough. The days of fatigue and diarrhea are no fun. Chronic upset belly and difficulty getting an appetite keep me skinny. I think the white hair is kind of cool. I remain pretty weak in my right upper extremity. I can't hold a golf club out horizontal to the ground without it slowly falling. So I don't hit the ball far but I'm hitting it well. I ride my Harley fine but it is difficult to muscle aound an 800 lb. bike. I will have to consider a smaller bike. But all things considered, I will happily take what I'm getting. When I look back  only 6 months ago, this is amazing and inspiring to me. I still can't do everything that I could with my guitars. I've had to change my playing style a bit but who cares? It's not like I get paid to play. Another thing I forget to mention is that I have lost a fair amount of hearing in my left ear due to the radiation. It is strange because I can't hear myself talk and trying to sing while playing is shot. My wife says she doesn't miss my singing. My father used to say that I "sang flatter than piss on a rock." But no serious complaints from me. I used to be more concerned if my socks didn't match my sweater. The "Summer of Fox" continues!

RMolinaro414's picture
RMolinaro414
Posts: 43
Joined: Sep 2014

Fabulous news Fox. So happy to hear all of this. Such an ispiration. The Summer of Fox is still in full swing. Awesome!

I am alive
Posts: 316
Joined: Jul 2012

Fox,

Just wondering.....what radiation affected your hearing?

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

My Onc recommended me to see an endocrinologist because he didnt like my Thyroid/hormone levels. He says that I now have the hormones of a post of a post menopausal woman.

 

And for my next trick...

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

The spinal canal tumor(s) was too large to zero in on. And poor results of any treatment were expected. My radiation was palliative in nature. Large dose radiation to the base of my brain down gave me the typical symptoms of mouth sores, burns and hearing loss. I went to an ENT MD. He said the loss was from the stiffening of the hammer, anvil and associated tissues. It may improve. I was so sick at the time and expected to die that I didn't ask too many questions. All I wanted was to be free from pain. Goal accomplished. I have another radiation oncologist who will zero in and blast away anything that returns. No second thoughts or regrets here. My thyroid was also damaged but we have that under control with thyroxin now.

I am alive
Posts: 316
Joined: Jul 2012

Jeez Fox,

   You really do have to be a warrior to endure these treatments. Radiation is a life savor but it does take its toll, doesn't it? we don't think of that at the time. My L1 vertebrae was radiated back in '11. Piece of cake. And thank God it did it's job. But it weakened the area around it and a fracture occurred a while later. Now I've got a 3cm in the right humeral head of the shoulder and am facing more radiation. Trickier, perhaps. Thinking of you enduring your own radiation - no picnic indeed - helps me man up for my own. Radiologists don't go into the details of the downside of radiation. Newbies don't really have much of a clue. But, as you say, beats the alternative and damn glad to have it.

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I did have stereotactic radiation to several ribs and vertebrae. I've been living with a fracture in my 8th rib since about then. I forget all the places I've had tumors.

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