you cannot kill a Fox

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.