1 Year Out Transplant

I wanted to make a list, for myself so that I might remember the setbacks of this year.  To assess where it is that I am now and how it is that I have gotten here. 

The following is what I have been working with for the past year.

Last year it began with my hero, my friend and my brother in this great fight Donny Querin being called home.  Within weeks of his passing I found out my cancer was back, and worse than it had ever been.  The need for a bone marrow transplant was made and I was back in the hospital, uprooted in just 3 days.  During this time I was trying to comfort my (now) sweet wife across the world, and explain that while I was just 3 weeks shy of completing a 2.5 year treatment, I had relapsed and we were to start over and the odds of survival and quality of life, at an all-time not great.  Instead of a proposal with promise all I could offer was the hardest physical trial of her and my life, and that was just to survive.

I began chemo immediately and through much prayer and heartfelt decision my wonderful anna came home just a couple weeks later.  We were married just days before I entered the hospital for the most intensive physical assault I would ever undergo.

The following happened.

-Induction Chemotherapy (those pics of our engagement,  I was throwing up between shots)

-1 week of full body radiation (1 year ago today, I started. Possibly the most terrifying process yet)

-The max dose of pre chemo for a transplant my (supple) frame could handle

-The bone marrow transplant (very peaceful process, a calm before the storm if you will)

-Mucositus (mouth and throat sloughing, you remember the vids) I remember the 14 days of no food, and - pain pump.  I remember 50+mg morphine in 12 hours and still the exquisite pain left after.

-Lumbar punctures, bone marrow biopsies

-Anaphylactic reaction (lungs closed, Emergency response team called) glad they sure are good!

-2 port procedures IN and OUT (out was 95 min with a scalpel searching through my neck, finally the port         

    was cut into pieces to remove.  Really wish I had taken pain meds)

-A Pulmonary Embolism (very very blessed it did not just take me)

-5 months of at least 5 hours (usually 7) in the bathroom and still a good 2.5 a day

-Fingernail, issues (basically had ingrown nails permanently for 3 months

-An onset of “severe” neuropathy, requiring more pain management to walk than I ever thought possible

-The nerve damage and loss of muscle between thumb and index finger (its used for ya know buttons,  

    picking up things, massage and of course pinching)

-3 month staff infection with Boils on neck head face and ears….(and procedure to cut staff out of eye  

    lids) thank goodness eyes  were swelling shut…. For a few hours a day for 2 months.

-GVH Skin- full body rash, sores, tightness

-Diabetes battle over 450 for over a month

-Drug interactions

-Steroid withdrawal  (pain loss of energy, depression)

-Weight gain  27 pounds in 30 hours…our 1 day honeymoon (fun ambulance ride to sf)

- Excruciating pain for months

-Lack of energy that was stifling

-Loss of bowel control many times in public

-Vomiting profusely even till the day of our wedding

-Flesh stripped off feet. (oh you saw the pics, RIDICULOUS!!)

-Hormonal and drug coaster that cant stop

-A cane, then wheelchair. (then stickyhickeys)

-An  IV for 8 months in my chest with daily injections

-Daily injections of needles (I even give them to myself now)

-Now more long term radiation nerve and skin issues arising (GVH)

-6 moves in one year through all of this

- Maybe worst of all, watching Anna have to see and experience all of this.

-Still knowing with all the treatment the numbers are still not great, there are inherent side effects of this  \

 treatment,  like a very high percentage of several other cancers, not being able to Ever go in the sun  

 again, without precaution, Chronic Gvh issues, and the knowledge that there are only a handful of

 survivors past 30 years.

And after I look all of this I just sit here and the tears flow.  If you get anything from what I write or my experience know this.   This list; these things, they mean nothing.  They are the cliff notes of a journey.  The tears that fall now are not of sadness or of pity or of any of that.  I am just so happy so grateful.  I am so glad that I am still here.  I am more aware now than ever that I am loved and watched over.

I know that God is CONSTANTLY aware.  Everyday that I get to wake up next to Anna validates what has come what will undoubtedly come in the future. 

            I don’t think there has ever been a year that I have been so blessed.  I have dreamed my whole life of being with a woman like Anna.  I used to have this thought that someday things with my body might just be ok.  So now 3.5 years in, I don’t necessarily have that in the forefront of my mind.  However despite my physical weakness, walking, sun exposure or immunity issues, I feel more free and able in ways now than ever before.  I wont lie to you and say its really Ever easy, or even seemingly do able.  But I can say without any reserveation that this life I have, these feelings, the gospel in my heart, and the Smile I feel from above, IS worth EVERY thing on that horrible list. 

And while it may seem that I have a rough road, I am very aware that there are so many around with a harder fight.  I watch often at a distance, and am just humbled by the fearless smile these warriors have despite the literal hell in which they reside, not visit, but live.  Donny, Alison, Jorge, Jacob, Kevin, Jane, Brian, Becca, Kriztina, John, Priya, and so many others, you are my inspiration.  Thank you for being relentless for giving Cancer no chance at taking your strength and for continually showing me how to do this.

And to my doctors, nurses and caretakers: there will never be words to express my gratitude for the continual health that you enable me.  Thank you for all the extra work, energy and love that you put into my care.

May each of you know that even in the smallest measure anything you have done to help me through this is remembered,  Every prayer, message, drive to sf, or rallying around my beautiful Anna, is thought of continually by me and still helps me push through the darkest of times in treatment.

So 1 year out from radiation and transplant now more than ever remember

C is Still for Chad, Not Cancer.  

And a special thanks to

The Chad Hickey Foundation

The Lazarex Foundation

The Andrew “POOH” Foundation

The Stuart Moser Foundation

Lymphoma and Leukemia Society

Team in Training

1 Year Victory: Chad III Cancer 0

I awoke without sleeping.  Its strange how in those times when you know that a storm has returned to take everything, rest is not really an option.  There is a jumpy sensation in your nerves and a sickening feeling I cant describe, that holds you in every moment.  You try to sit like this, try to rationalize, understand or at least make it work, and nothing.

And then the phone call comes, and the world shatters again.  The bubble breaks and you are left broken crying, trying to understand.  There is no stomaching the fear, there is no holding in the terror.  What Cancer didn’t quite take from you before is now threatening worse than ever.  And not only that, you are quite certain you won’t have the strength to do it again.  A year ago today I sat with a dear friend and talked about the real possibility of not being alive in a few months.  Leukemia was back, more aggressive than ever and chemo alone would not work.

I could write for pages to try to explain to you the feelings the fears and disappointment I had, but it would not convey my point.  Everything I had worked for, every pill i had taken for 2.5 years, and the months spent living in the hospital; what was it all for?  Had i lost everything?

These were the thoughts I had as I stood holding myself rocking back and forth.  I had just spoken with the doctors, and it was clear to me that my options were very limited, very difficult and this time the cancer held little regard for anything.

I will tell you now, for me I felt done.  There was nothing innately within me that could have propelled me into this hell again.   And then as i sat staring up at 11 long, the wing i had fought from, nearly died in, and learned the most important lessons of my life from; I remembered.  I remembered the love offered, the prayers rendered, the examples set by those fighting every day for the same freedom, and i cried.  It had been the hardest path i had ever known, and yet the things i had learned, the people i now new, i loved. 

And now more than ever i had someone to fight for, the chance to have her forever was just within reach. 

I felt my soul being tried to its core, and i just prayed that if i would have faith, that throughout the pain, the planned physical torture, and the unknown, i would be comforted. 

so we began...

3 more months of Intensive Chemo

5 days of full body radiation

The Eutopicide treatment

The Bone Marrow Transplant

14 days of mucositus

A pulmonary embolism, and Months of Intense GVHD

And now months of limited movement, pain, an inability to be in the sun, drug complications, infections, diabetes, steroid withdrawal and so much more.

I would be lying if i said any of this was easy, or remotely fair. 

However i will say while this has been the most difficult and trying 12months i have ever experienced, i have been more blessed in 12 months than i thought i could be in my life. 

 i have been so loved, and cared for this year by so many.  the heartfelt concern and commune to above in my behalf i have felt every day.  i know that i dont deserve nearly this treatment but am so grateful for it.

i married Anna, and with all the unknowns in the world, i have a beautiful constant one that will eternally bring me joy.

And I am aware now more than ever that I am Loved, that God is watching, and will provide.

if your just reading this for the first time or you have been following for 4 years, know that even in the most physically difficult time of rehab i have ever had, i am joyful.  i am grateful, i am blessed, and throughout a literal physical and emotional hell, giving up is not an option. 

Thank you for your prayers, your love and your ability to lift me on the days when it truly impossible to do so myself.  Thank you to my doctors and caretakers.  And thank you to my sister Erin and her ridiculously strong cells; while they rip me apart, I am alive because of them. 

I don’t think i could have ever been as grateful as I am today for anything until i lost everything.- 

Have Heart, C is still for Chad-

6 months

It is hard not to feel some days like I have dodged a bullet.  While I look at those around me that continue to suffer I can t help but feel continually more blessed than anything else.  The past six months have definitely been challenging in ways I would not wish to battle again.  I witnessed, felt, experienced, and have learned things that honestly I pray to never forget.  The price has been great but as I sit and think back I am overwhelmed by gratitude, by strength and even now as I am in post transplant rehab, I cannot help but just smile and cry.  I think of the fear, the sadness and the weight of the knowledge of prognosis and can t begin to tell you what a fight this has been and will remain.  I am more tired than I have ever been, I am less able to do many things than I once did and yet, in this there is such triumph.

Months of fighting, weeks of treatment, Days of inexplicable pain, hours of hell, and moments of not being sure if I was to make it, and yet I am still here.  3 cancer diagnosis, a week of full body radiation, every chemo you can imagine, a pulmonary embolism, diabetes, steroid withdrawal and a bone marrow transplant, and yet I am here, my body may be broken or not as it once was, but neither is my spirit.  What is there to lose?  What is there to fear?  It is clearer to me now what little any of these thoughts can do for myself or anyone.  I have watched and been blessed to spend time with patients in this course that have the worst odds imaginable, the darkest of probabilities and yet they walk the laps of the halls of 11 long with the power of God shining right through.  I count myself blessed just to have been able to be surrounded by the giants, who on the daily probably have no idea of the strength they give just by continuing on. 

There are no promises only hopes for what is to come in the next few years, but I am grateful with everything that I am for the Teams at Ucsf and the Teams at home that have buoyed around me for so many years now.  There really is no way of ever showing how grateful I am, I mean how do you say thank you for your life.  How do you express what it means to reflect on the days of diagnosis and relapse and explain to someone that on your worst day and in your darkest hour, their presence made a difference, the difference?  If I figure out how I will let you know, but until then I will remain grateful, eternally conscious of the gifts given to me by those around.  I pray that others that should ever embark on a journey as this are as guided and rallied around.   

Oh and in case you still don’t believe in miracles

As of late 2010 the Chad Hickey Foundation has been incorporated and soon will begin being able to help others in their fight against cancer. 

Thank You and as always

Have Heart

C is Still For Chad

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