the year

              It is possible that in and through all of this I am more lost at times now than ever before.  In case your joining now for the first time I will confess now that the direction that this blog is going to take is elusive even to me. 

              It is often that I find myself in the situation that is a flurry of activity with great noise and where monitors scream and pulse rates seem to pause mid beat to allow for my heart to sink.  Temperatures flare and blood pressure drops.  Lists of emergency medicines are rushed to my system as the resgular onslaught of the full meal of pills is put together for me in careless fashion.  At one point my palms would sweat and as blood or vomit would drop from my body.   I would audibly release prayers and promises to a listening party in hopes for strength or change.  Now however this scene of emergency is so commonplace I just find trying to focus on the next step is my only move in this place.  Stay conscious, or try to remember every possible reason for how it was I arrived here.  Even at times going to lengths to try to contact that last loved one or three that I in this periless time cant but think about.  Did you know that when you cry you salivate?  I only bring this up because as it were in these instances at one point I drew upon tear glands that in conjunction with their operation, signaled to my own saliva glands to do the same, and now in the time since the eyes have been drown in tears, my mouth still acts without its companion.

                 

              I have been rushed to the emergency department  eight times since January of this year.  All were followed by admittance and treatment for various infections, viruses, bacterias, and cancer related problems.  From February to June the longest time I spent away from those white walls was ten days.   I have lost the function of my tear glands and am now headed for blindness.  The transplant has taken up arms against my skin and since march I have been lathering with either a thick layer of Vaseline, aqua fore, or zinc oxide, and leaving applied at all times to 90 percent of my upper torso.  There has been significant muscle loss along with vision changes that has made movement difficult.  Several new medications cleanse my palette as I now travel weekly back and forth to san Francisco to do a treatment called photopherisis.  With port in use and blood manipulation via light I find my Tuesdays much less filled with tacos but more so piled 6000 dollars high on a tab I pray to never see.  The time split is siphoned just one more way by sleep.  The changes in skin composition, and med concoctions take me to delirium and sleep for at least one third of my conscious existence. 

              This is the current cost of being alive.  I pray daily that my heart finds solace in this transitional hell.  I have been blessed by the accompaniment of others in my travels and as I lay bedside have found on many occasion friends taking the time out of their lives  to hold my hand and through their hidden tears we have been able to remember other times.   The more frequent inquisition now is a timid but gnawing and persistent question of will you survive this phase, how long do you have, are you in pain?.. and so forth.  I try to be honest with others but as I do I feel myself wanting to lie to me.  In the past five years of ups and downs and downs I have been put to the wall and asked to climb.   From 4 week daily chemo courses that leave your body torn, your mind exhausted, and your spirit worked, to the long term damages wrought by chronic illness, there have been many things to work through.  Im not sure if it’s the lack of muscle in my legs, the scar tissue that now covers a good deal of my body including my face.  If it’s the diminishing vision I have that seems to correlate to a deeper meaning of really seeing my way through this.  Or maybe after five years of climbing, 4 cancers, a bone marrow transplant, 13 places ive lived, countless treatments, and departure of physical abilities, my life expectancy shortened drastically, the loss of a wife and several friends  I may just be really tired. 

              At any rate the plodding along will continue.  The gratitude for those who accompany me in this endeavor will never diminish nor, unfortunately will my need for strong support and love to continue.  I just hope that as the next wave of difficulty prepares I am able to find the inner resolve to not let it be my final wall.  That little access to the energy left inside that does not know failure. 

              As I said before the direction at this time of this blog is undecided but very much from the center of me which I believe may end up being more telling of my struggle than at other times.  Maybe those facets of my story have not had their place with me their telling and in that I may find space for more.  This is my story in a late style of me.

Fresno Cancer Survivor Network

The hardest part of so much of the past several years has been saying goodbye to good things. Time in the sun, outdoor sports, many dreams, plans, and securities are just some. However loosing friends through this battle seems to be the hardest of all the losses.  From personal friends to family, I will say the loss of anyone to cancer or just life I suppose; is  something that does add an aspect of sobriety. 

I have watched many fight a glorious battle only to be called home amidst the fray, never able for themselves to see the victory they may have sought.  It is this place of observation that I write today.   I am grateful continually for the unparalleled support, love and compassion that is given so generously to me.  My body continues to amaze not only doctors, but me and I still continue to fight.   

Even after having lived through several treatments and having had many complications I feel inadequate in my attempt to express what I have been observing as of late.  These experiences and time spent with cancer  have left an impression with me of what cancer Survivor’s here in the valley are in need of.

The Fresno valley is in no way unfamiliar with the term cancer, and yet for the day to day, the rehab and the outpatient-clientele, post treatment survival is seemingly more difficult than need be.  Even socially the network for any sort of normalcy seems underdeveloped and in much need of some cohesive strategizing.

Fresno is filled with amazing oncologists, radiologists, and cancer centers.  With that fact remaining, many patients like myself find treatment in other cities or have outpatient treatment here.  When this is done, the day to day survival and regiments are more than straining on both patients and family.  Months and years of treatment can continue and the life of the patient continues onward (at times) without much outward guidance. 

If you found yourself living in a larger, more funded city, if you will; there are a myriad of rehab infrastructures and facilities.  Not to shine any sort of bad light on the current care here in the valley, but in larger areas with broader demographics of specific diseases, there is obviously a drive for more assistance.

What I am getting at is seemingly simple from the outside, but I believe with the attention and care of many, could become a more complex and very reaching organization. Insurance companies including state and federal have had to cut back on much needed post-treatment for cancer, including surgical, chemotherapy, and radiation patients.  While there are obvious reasons for many cutbacks it does not do away with the great need for many that is unmet.

The great thing is that even in the economic quandary we are in, many are more than willing to help with their time, services, and more.  From practitioners, to business owners, health advisors, exercise instructors, physical therapists, rehab specialists and other professionals, there are many waiting to assist.  While insurance companies would define these as “luxuries” I am sure most would agree any help is help, and many things are needed that are not covered.

The problem can be as simple as a monetary issue but so often there are so many limitations to those just finishing treatment or for those in chronic treatment.  Signing up for a gym membership, using money for extra support like physical therapy, yoga, massage and other alternatives for those going through this struggle, is a not always a feasible option.

Over the next several months and in conjunction with several local charities and businesses the Fresno Cancer Survivors Network (FCSN) is hopeful to be able to help aid in connecting providers to patients in this meaningful way.  This will be as stated before, a conglomerate of local business owners, charities and professionals engaged in an effort to create a Network for those coming out of treatment for varied types of cancer.  The goal is to provide free or at least affordable options for many services out of reach to those in need of the assistance.  Our foundation is designed to facilitate those connections, do the research, marketing, fund raising, and gathering of resources and bringing them into one center.  We are a volunteered middle man if you will.  The organization is lead by several professionals with experience in varied areas to add to the patients success. 

 I personally don’t know anyone who hasn’t had a close relationship with someone either currently fighting, a survivor, or who still holds dearly the memory of someone who fought till the end with this disease.  I’d scarcely say that anyone could.  I also know personally the difference having not just the knowledge that people are concerned and involved but seeing the manifestation of that through service and kindness, IS life changing. 

To this end, The Fresno Cancer Survivor Network is hoping rally Heart and Energy!  I have personally felt from the readers on my blog and hundreds of others, and know that on a plane of some sort of equity, being sick or watching those you love sick takes more from you than you could expect.   So, together with that boundless heart and energy, lets give back for those that have lost and would continue too.

So as you are thinking of what you can do to help think of those around.  Think if you felt terrible what might be a source of refuge?  Money is not the end goal here, rather safe activities and places of refuge, things to help people reconnect with health, in any way possible.  We want to have the ability to connect the dots from discharge from the hospital and fear, to hope and acceptance into a community ready to aid in the road less traveled (rehab).  

If there has been anything learned in my short four years of life in and around  cancer, it is that we are all uniquely connected.  Sometimes we just don’t see it, and with the Fresno Cancer Survivors Network, maybe we can start to at least to feel it.

We are looking for, *and not limited to*

Personal trainers

Gym Owners

Massage Therapists and Instructors

Yoga instructors

Psychologists

Social Workers

Medical Specialists

Trained rehabilitation specialists, (speech therapists etc)

Support Group Trained Specialists

Local Business Owners

Investors

Athletic sponsorship (if Nike can do it so can WE)

Graphic and Web Designers

Hospitalists

Cancer Centers

*really anyone who can bring something to the table, we will put to good use

Whether it’s a donation of time or resources we can and will find a person deserving of the effort.  From hours given in yoga or meditation instruction to gym days, or hours of design or even therapy sessions, many of these are key to a quicker or more sustained recovery.  THINK, BRAINSTORM, and SHARE your ideas or resources.

Our Website will be up shortly and will have information on events, fundraisers, patients, and the success of many.

            If you question the success rate WE have achieved (and I do mean you and I) at all- please feel free to read my blog, meet me in person or any other person who has struggled with this in their life.   The gifts given not only change the person but are able to inspire much more than you will ever know.   It is the grace shown to me through this journey that our organization hopes to be able to generate for many others.   Thank you for your time, as always thank you for your love and concern, and remember it does not go unnoticed.

While C is for Chad, today it is for Change, and as always C is Not for Cancer!