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you cannot kill a Fox

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

I've been unable to post due to my health and computer issues. I will try again.

Folks, I've been doing this 7 1/2 years. Stage 4. Life expectancy was June 2011. Long time ago. I've made a few mistakes but have played almost every hand close to perfect. I responded to drugs, radiation, surgical intervention, and I have an awesome self motivation because of my masters training as a Physical Therapist. Add 40 years as a dedicated weight trainer and distance runner. Being an all around jock has allowed me an exceptional body awareness to sense and feel things most cannot imagine. Stick a Harley between my legs and I will admit to being one highly respected bad a$$ health care provider and survivor.

Keep in perspective that 4 cancer centers stated they could not help me. Dana Farber didn't even want to follow me. But Smilow cancer center at Yale University had a plan. I was one of a few to qualify for the mdx 1106 trial. I'm very proud to have been a succes leading to the life saving drug Nivolumab that will continue to save lives. How could I not be motivated? I was able to eliminate about 20 chest, lung, rib and spine tumors allowing for me to continue training and fighting. The cure was so close. This near perfect candidate had a lot of work with careful planning ahead of me. Unheard of opportunities.

After the trial it was IL-2. Votrient, bunches of radiation cabo, more nivo, nivo and ippi, TKI's, mtors and more.

My medical record is thick.Tumors come and tumors go. Often the pain is unbearable. Fentanyl patches, oxicodones, tens, nerve block injections. Thank god for med. marijuana. I feel bad for those with moral or medical objections as it helps me feel so much better and independent.

Unfortunately tumors no longer disappear like they once did. The shear volume is astonishing. They no longer are stable. They continue to grow. Just to name a few there are lesions in my pelvis. Most ribs have several fractures. Spine lesions are present from base of skull to sacrum. Spinal cord subdural lesions are from head down to about T2. Right brachial plexus is totally involved. Rt. shoulder girdle is as disolved as involved. I've lost near complete sensory/motor function in both upper extremities. Walking is difficult due to strength and balance loss.

So many complications don't give me the heads up skill I relied on. I miss things that should be more obvious. I developed visual migraines. I continued to weaken. Shortness of breath has made many adaptive adjustments like bathing, dressing, eating, sleeping and home nurse visits. My wife coordinates my care, manages my meds and drains several thousand ccs of pleural effusion each week.

As the visual complications developed we found my lungs and lymph node tumors restricting all my mobility. I've had to use both cane and wheelchair. Visual migranes? Nope. At least a half dozen more brain tumors I've had gamma'd. Visual field deficits leave big holes in my sight with no ability to isolate and focus. I'm reading good now. Tonight maybe not. Sometimes vision is liike trying to focus on moving illusions with many missing parts. My eyes feel like I've been poked by sticks giving me painful headaches.

Through it all I could always find a way. Adjustments here, suck it up there. Compensation here. But not this time. My disease has been beyond recovery for several years now. What and how do we prioritize my care? My bottom line is that I NEVER deal with the pain levels I have experienced to get this far. Quality of life is too deteriorated.

We will continue with pain treatment. Radiation is always  effective  but now scattered brain mets leave me confused. Without my wifes care, I would not have survived to this point. I have lost about 75 lbs. It can take me 2-3 hours to shower and dress when I do it alone. I have more support available than imaginable. Palliative care, social work, vna, and hospice later on if necessary.

I watch this RCC show destroy people. From diagnosis the lucky are saved. The rest not so lucky. Never a peacefull moment left in life. All day everyday for 7 1/2 years. I get up and practice what it takes to see another day. But this time will be different. I've never been afraid of dying. I have not been ready. I am holding nothing more than a couple of dueces now so I will bluff and stall. There is no treatment I haven't had available. It remains mind boggling  to consider all my cardio pulmonary thrombotic tumors obstructing my heart, I have multiple afib episodes daily. So if you just forget about my cancer you got to ask, Why am I still alive?

My body won't quite.  Hit me with all you got. Obstruct my brain. Obstruct my heart. Go ahead and throw a clot. Doesn't matter. A few more weeks and I'll probably be driving again. I have so mutch work to master. I've already passed on 3 biker camp trips and want to enjoy how rapid time passes.

Life is good if you work for it. You got to want it. It will never be the same by luck. So as I have been beat into submission Some idiot in charge of my demise mistook me for someone worried about an insignificant incisional scar. My doc promises to not pronounce me dead as long as I keep moving. So now I'm going outdoors to do what I can to keep my yard looking great.

I love you guys. I know so many worry endlessly and you will be fine. As long as I  can post, I'll try to offer good advice. We do this together.

CRashster's picture
CRashster
Posts: 229
Joined: Mar 2017

if there is anything I can do for you, please do not hesitate.

Brock1969
Posts: 80
Joined: Jan 2018

That post right there should be emblazoned for eternity. The strength, fortitude and will to write it is both amazing and inspiring. You truly are one bad mother my friend. I pray for your continued peace and internal strength. 

MelBlessed's picture
MelBlessed
Posts: 71
Joined: Aug 2017

you put it all in perspective.  prayers for you and good days ahead. You have helped so many.  As you have said before fly high! 

icemantoo's picture
icemantoo
Posts: 3208
Joined: Jan 2010

Do not cross the pond.

 

 

icemantoo

kutzi17
Posts: 17
Joined: Apr 2018

other than "The Fox" but I feel as if you're a long time comrade. I want you to know that I'll be praying for you and will be sending positive vibes your way. You are an inspiration to many. Keep tup the fight, we'll be rooting for you! 

 

 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Hey Fox. I’ve sent you a few messages, I hope you got them. I’m glad to see you posting again and know you will keep fighting because you’re a tough one. Lots of good thoughts to you.

Nanaof10's picture
Nanaof10
Posts: 47
Joined: Nov 2017

Sending prayers.

sandy23
Posts: 137
Joined: Jan 2017

Never as a better post been written.  On any forum, anywhere.  Just WOW!!

donna_lee's picture
donna_lee
Posts: 892
Joined: Feb 2009

We can show up to help him bathe and dress.  It's the least we could do.

Holy Shucks and all that crap.  We won't turn loose of you, yet.

Love and Hugs,

donna_lee

CRashster's picture
CRashster
Posts: 229
Joined: Mar 2017

escalated quickly.

Wehavenotimeatall
Posts: 479
Joined: Aug 2017

i could write could do justice to  your eloquence  and  beautiful precise sentiments above

You remind me a little bit of my husband 

He never complained or ever let go for one second in his cancer battle(there were tears  but he never one gave up)

So excuse me if I don’t buy 100% the tough guy act.. I know how much you hate all this...

But that just shows what a special special person you are .. someone knows you are too good to let go off

When I first came here scared and alone Icemantoo give me hope that I didn’t know was there

And you .. through time give me strength and courage.. i am no longer  the quivering wreck that I once was..  and I am trying to get to tha please of peace.. wow,.......what a difference.... I can’t describe it.

I can stumble along your path but your light will always be stronger than ANYONE  I have ever met.

Keep,Foxing

i will keep loving you big guy

Annie

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

Foxy. Our dear, sweet, amazing Foxy. I just want to wrap you in a big bear hug, and make you better. Your strength and determination are inspirational. I know you are going to continue showing cancer who is boss!! 

I love you, my friend. 

Sending you warmth and light.

(and lots of hugs)

Jojo

stub1969's picture
stub1969
Posts: 790
Joined: Jul 2016

Thanks for all you do here, Fox.  Much appreciated!

Stub

Canadian Sandy's picture
Canadian Sandy
Posts: 491
Joined: Jul 2016

It’s hard to know what to say at this point in your life. Lots of good karma being sent. 

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

I love it, you really put into perspective how trivial it is to have a partial kidney loss or even a whole kidney loss, compared to the battles you have fought.Good luck

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

HDPete
Posts: 13
Joined: May 2017

Prayers Fox! 

Hd67xlch's picture
Hd67xlch
Posts: 143
Joined: Apr 2016

You wouldnt happen to be the hdpete I know from Chicago would you? If so this is h67xlch from the Outlaws in FL, we new each other from the now defunct raging bull. If so hope you still have that old shovel in the wind. Good luck

HDPete
Posts: 13
Joined: May 2017

sorry wrong guy, I’m from Milwaukee Wi.

BoondockSaint's picture
BoondockSaint
Posts: 240
Joined: Mar 2017

Wow.......you tough old bird you. Best wishes to you my friend.

They say your heart is as big as your fist.......so keep fighting

You have and continue to be an inspiration to us all.

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

You were one of the first people to calm me down here. You happily approved of my pizza and beer moment. I hope that your having a pizza and beer day through all the positive thoughts and prayers you are getting. You wrote often FLY. We are returning the favor.

APny's picture
APny
Posts: 1933
Joined: Mar 2014

You are amazing. No words to articulate what I want to say. We need you and you're always in our thoughts. Love you!

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

I am fairly new here so I'm not as chummy with you (my loss) but it seems this site needs you badly!!!! You are the poster boy for RCC and helping other.  Please G-d send continued health and treatments fox's way. June

EBFRCC
Posts: 23
Joined: Jun 2018

Thank you for sharing. And thank you for being a pioneer in treatment options. I expect to start Nivolumab soon, you helped make that possible. 

I wish you as as much comfort as possible. Let you heart stay strong, even if your body does not.

Bellafelice
Posts: 57
Joined: Sep 2008

Dear Foxhd-As the young people say You ROCK Fox. I have no words to say to your incredible post- except that you indeed are a one in a million guy. Biggest hugs ever

Allochka's picture
Allochka
Posts: 861
Joined: Nov 2014

Thank you, Fox! For being here for us and your family, for this post. I will never forget it...

We love you

ImNotDeadYet's picture
ImNotDeadYet
Posts: 241
Joined: Apr 2017

I'm glad to see you're still among us and fighting hard. You definitely inspire me, Fox. Many times, especially recently, I've been a little down. Remembering your story and the wisdom it's allowed you to share have helped me get my attitude back on track. I wish you the best and hope you'll be here with us, leading by example, for as long as you can. Thank you, Fox.

Gary

Hoss79's picture
Hoss79
Posts: 78
Joined: Nov 2017

Thank you for this post!!! Truly amazing!! I think every new comer to this site should have to read this post. Sending good karma your way.

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

Maybe you can't kill a Fox, but the Fox can make the little chickens cry. 

Your story touched my heart in such a huge way.

Thank you for sharing your heart with us.

Much love to you.

Yes, you are one hellova badass biker!

damatken
Posts: 16
Joined: Dec 2014

Fox, I always, ALWAYS check on you and have for 3  years since joining this group.  Just left the hospital where my husband is battling.  You always offer such great information and support.  Your recent post just made me step back and smack myself for feeling helpless.  We should all keep moving forward and dare the devil to give it another try.  You continue on, enjoy life, love your wife and thank God for every single moment given.  

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

I am rarely left speechless, but that post did it to me.  You continue to inspire, shock and awe.  You epitomize the spirit of Jimmy Valvano who died of cancer--Don't give up, don't ever give up.  Thank you for all of your thoughts and inspiration.  Keep fighting.

Tapman63's picture
Tapman63
Posts: 136
Joined: Dec 2017

You've been a leading force on this forum in the short time I've been involved.  Since this group helped me so much in that scary beginning time, I swore I'd come here and try to comfort and help the newbies that will show up as scared as I was.  if I'm able to comfort a third of the people you have with your encouragement and strength, I'd feel like I was doing something good.  Hang in there - fight the good fight - and know you have a lot of friends around the world sending you all the good wishes and karma possible.

Stay strong!

Jim

jazzgirl's picture
jazzgirl
Posts: 133
Joined: Nov 2017

Your profile photo is always in my mind when I am down or needing courage.  What a beautiful, heartfelt, eloquent, hard-won manifesto you have written.  After all your years as a physical therapist, you are now giving us strength as training as well, through your words.  Hold on to the image of all of us standing around you, holding you.  Love and blessings and gratitude coming to you...

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

I can't count how many times I've logged in here and had the good fortune to read what you had to say. Gratitude. Thank you thank you.

Hugs,

Todd

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

Have been looking forward for your post, let's keep fighting until the more break through treatment are being developed!

Jan4you's picture
Jan4you
Posts: 1317
Joined: Oct 2013

See big guy...YOU ARE SOOOO LOVED

by your CSN family for sure!

 

Healing hugs, 

Jan

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

Fox,   You continue to set the standard.  As I was thinking about this, the term "Fox Strong" came to mind and I nominate it as the Kidney Cancer Surviors ideal of the perfect mental attitude and strength.   Hang in there my friend, you shine the light for us all.

Jack

Deanie0916
Posts: 241
Joined: Nov 2016

That's good. Oh I hope you know how much your words, sit and wisdom have helped so many including me. My thoughts and prayers are with you. Hope you had a nice time gardening. Hugs and love to you and your wife. Thanks.

AnnissaP's picture
AnnissaP
Posts: 623
Joined: Sep 2017

You are an amazing man. Human being. I just love you and your will to live. The way you write and relay your thoughts is nothing short of beautiful.

Angiebby75's picture
Angiebby75
Posts: 190
Joined: Aug 2017

You are an excellent writer. Your words always uplift me.. Always thinking of others. Prayers and good karma to.

rhominator's picture
rhominator
Posts: 232
Joined: Nov 2015

Too bad we never got to ride together. I always wonder how close our paths crossed on the road. It would have been fun.

Bryn1108's picture
Bryn1108
Posts: 82
Joined: Jul 2017

Touching our lives to say the least.  

Praying you will find glory land wherever you go,  whatever you do.  

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

My Foxy! I am so happy I can say that I have been with you through this forward moving journey. I am so proud of you for many things, but for the selfless posts you continue to provide. The message that we never give up. We never stop for self pity.  We say "no to cancer" and keep moving on. This is what you do! When I first read your post I thought it would be short, being that you have very little strength, mobility and sight. Not so! You give everything you got, always have and always will. I know you will find the next thing that will deliver for you. There are so many advances. Will the new right to try law help you with the new meds, or the new immunity where they take the tumor, fix it up in the lab and insert into your body? You need to investigate and push for it.  I am so proud of you, I read your post today and now I am rejuvenated for the day. I am sending prayers and love and good karma your way. If you need anything please let me know. I thought of you yesterday as my hubby bought a new Martin. As smooth as they come! You are a bad a$$, and you continue to show who is boss. Love you! Angec

marosa's picture
marosa
Posts: 332
Joined: Feb 2015

Foxy,  I had not been able to have a wifi conection for the last 10 days.  Just had the network fixed this afternoon and first thing has been coming here to see about you.  I have no words. Would not have them in spanish,  english or french.  But if I can't express them in writing, I can surely feel them and I hope they reach you.  Not just words, so much more than that!  I cannot begin to tell you how much I have learned from you, how much you have walked hand in hand with me these last 4 years.  I only wish I have been able to give some of that back to you.  You are for me, one of those few people who comes around one day and makes a deep mark, a positive mark, an unforgetable mark on ones life.  I love you as a very dear friend, I have great respect for you and I relate a lot to many of the things that I know have made up your style of living.  Okay, so let's just put it this way... our spouses could be jealous!

Love you. Thank you.  Keep on keeping on. The world is a better place with you in it.

 

Srashedb
Posts: 482
Joined: Dec 2013

Oh, Fox, I have read your post over and over but words in response are not coming easily; I want you to know how much you mean to me and obviously all who post in this little family of ours.

you were one of the first survivors I met when I began posting here; you were in between IL2 and managing to ride your motorcycle; when my husband was fatigued and laying around, you provided hope t me and in turn, to him. Multiply that to everyone else you have helped and the karma is coming at you from everywhere.

your honest and gut-wrenching description of your current state is brutal and painful but like someone else noted, astonishing in detail and length for someone with all of the physical limitations that you have but it is so appreciated. You are one tough badass but also a man of sensitivity.

i hope that either you are occasionally reading here or that someone is reading to you because all of these messages are heartfelt and it is imperative that you know just how much you mean to us.

Sarah

klj15's picture
klj15
Posts: 38
Joined: Jun 2017

Prayers for many good days ahead! You are such an inspiration to this group!!

TLAlways's picture
TLAlways
Posts: 15
Joined: Feb 2015

Thank you for sharing Fox! You really are a bad a$$ and an inspiration to all!

Even though I have never met you I feel like I know you as you have touched Our Lives in such a positive way!

 

Bellweather
Posts: 100
Joined: Jun 2013

Fox,

 

Keeping you in my thoughts and prayers brother.  Although I do not frequent this site as much as I should to help the newbies and oldies, when I do, I first look for your posts.  I know it has been a rough ride but no one rides the rough road as smoothly as you my man.  I know you appreciate your wife for obvious reasons and I am sure she is a special lady.  The only response that came to mind after reading your post was "F^#$  Cancer!!!!!!!!!!!!!!  There, I said it and it felt good.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

"...Life is good if you work for it. You got to want it. It will never be the same by luck. So as I have been beat into submission Some idiot in charge of my demise mistook me for someone worried about an insignificant incisional scar. ...I love you guys. I know so many worry endlessly and you will be fine. As long as I  can post, I'll try to offer good advice. We do this together."

Fox, you're the epitome of the combined wisdom, care, encouragement, and spirit of this community of those of us who are LIVING with cancer.

Well, that, and your pizza-and-beer thing got me to try drinking beer... Huh, not bad (Not to worry: Fox has not helped Jerzy Grrl turn herself into a woman who is any wilder than she already is; my allergy medication pretty much guarantees that a mere 2 oz of ale and I'm probably unfit to drive - definitely a cheap date).

Thank you, Fox -- and thank your wife, your little dog, and all of the folks who have been inspired by you...!

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