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
