you cannot kill a Fox

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1

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.

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Comments

  • CRashster
    CRashster Member Posts: 241 Member
    #2
    brother

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

  • Brock1969
    Brock1969 Member Posts: 80
    #3
    Man Fox....

    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
    MelBlessed Member Posts: 71 Member
    #4
    What can one say?

    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
    icemantoo Member Posts: 3,361 Member
    #5
    MelBlessed said:

    What can one say?

    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! 

    Stay safe Fox

    Do not cross the pond.

     

     

    icemantoo

  • kutzi17
    kutzi17 Member Posts: 17
    #6
    I don't know you

    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
    Kat23502 Member Posts: 179 Member
    #7
    Hey Fox. I’ve sent you a few

    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
    Nanaof10 Member Posts: 57 Member
    edited June 2018 #8
    I have no words....

    Sending prayers.

  • sandy23
    sandy23 Member Posts: 143 Member
    #9
    Never as a better post been

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

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #10
    Let's make his day, ladies...

    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
    CRashster Member Posts: 241 Member
    #11
    donna_lee said:

    Let's make his day, ladies...

    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

    That

    escalated quickly.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #12
    Nothing the

    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
    Jojo61 Member Posts: 1,309 Member
    #13
    Foxy. Our dear, sweet,

    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
    stub1969 Member Posts: 978 Member
    #14
    Thanks

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

    Stub

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    #15
    It’s hard to know what to say

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

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #16
    Show of strength............

    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
    HDPete Member Posts: 16 Member
    edited June 2018 #17
    Prayers Fox! 

    Prayers Fox! 

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    #18
    HDPete said:

    Prayers Fox! 

    Prayers Fox! 

    Hey HDPete.........

    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

  • BoondockSaint
    BoondockSaint Member Posts: 242 Member
    #19
    Wow.......you tough old bird

    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
    Retcenturion Member Posts: 240 Member
    edited June 2018 #20
    Sending more good Karma

    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
    APny Member Posts: 1,995 Member
    #21
    You are amazing. No words to

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

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