A Huge Milestone ~ Day +365

Following is the final post I wrote for The Big Guys Caring Bridge site. I'm so happy for him and so proud of what a warrior he is! I'll get back in the kitchen now, doing what I do best. Thanks to ya'll who've kept up with his progress and wished us well!  
                                _______________________                                                              

 On on way to Denver....Day -17

It’s was just over one year ago that I started this Caring Bridge site for Larry and in reading back though some of the posts and messages I am completely moved to tears. It seems like that period of our lives was so long ago and I almost feel like a stranger to that time, yet I find the wound to still be so raw. 

The day we went to the "Caregiver Class". Day -15

But WOW! What a difference a year makes.  

While our life has returned to a sort of normalcy, Larry still has to plan his weeks around doctor appointments and I still wash produce longer and more thoroughly than the normal person, but overall we are trying to live our life like we did before the transplant.
     And here we are…one year post transplant and what stands before me is a man who is stronger, healthier and more amazing than I could have ever imagined. Gawd, he looks so damn good he almost makes me sick!

Sierra, preparing her dad for his new "look". Day -13

But seriously, looking back over this past year I can’t believe what we have been though. When I say it seems like a lifetime ago, it really was. Larry’s lifetime ~ and so much has changed.
     Our role as a couple has been challenged in ways that we could have never imagined and we may never see each other as we were before, but we are stronger for having lived through it. Sickness has a way of doing that; it makes one person needy and turns the other into a gatekeeper. While Larry was at his weakest I was still able to see his strength and I drew from it. My weakness was disguised by humor and long walks. Prayers and conviction got me through some tough days when hope wasn’t enough and when I didn’t recognize the man lying on the couch 24/7.  Now, 365 days later I can’t believe how far he has come, especially since I know where he has been. He’s kind of like a car wreck and sometimes I can’t quit starring at him.

His last meal, before he admitted to the hospital. Day -8

 Sure, lots of people have been through this. Lots of wives have been caregivers and lots of mothers/fathers/sisters/brothers/daughters/sons have watched their loved ones stand at death's door and then come back to live another day.

     And Larry’s not special, right? Wrong. Dead wrong. He is special. His will to live is special. He proved it when he was only seconds away from stepping off that ledge.

In ICU, following his cardiac arrest. Day +7

His ability to be positive, to make it look easy is special, because it was anything but. His toughness is expected because ~ well, after all he is “The Big Guy,” but who knew his strength would be infectious? That it would be able to pull us all through?

Day Zero...just moments before receiving Ron's stem cells.

And now all those days of hooking him up to that pump which attached to the ugly line that poked out of his chest, just seem like a bad dream (read: nightmare).
     Towering over a man who has always towered over me made me feel significant in a tiny way; like I was doing something bigger than him, but still, during that time there were many days that I had a hard time making eye contact with him. Out of respect; or maybe I just didn’t want my mascara to run; or maybe it was fear.  Fear for me, not him. Fear that my weakness would be exposed. A phony in blue rubber gloves and a yellow bank robber’s mask was not a legacy that I wanted to leave behind if I suddenly got the urge to try to beat a freight train across the tracks. Plus, the fact that Larry drew the Care Giver Short Straw was not lost on me, so I figured I owed him the dignity of at least pretending to be the strong one when he was at his weakest. 

My new look. Nobody bend over and nobody gets hurt! Day -7

Anyway, those days now feel so far behind me. Fast forward to this all important milestone and I see a new man! Energy and attitude were reborn and now flow through his veins with the stem cells, and now he says he feels better than he has felt in the past few years. The fact that his waking hours now exceed his sleeping hours, and that he is putting in twelve to fourteen hour days is proof that you can’t keep a good man down. He likes to show me that he can pull his pants off without undoing them, which is proof that he still needs to put a little weight back on. I always just snarl, “showoff!”

Cappy, Savannah & Paisley, on one of his first big outings. Day +48

The biggest remnant of the transplant is that he is still on a lot of pills—mag, antibiotics, and immune suppressants. Graft-versus-hosts disease still persists in his mouth and because of that, a week ago Dr. Nash and Dr. Matous decided to up his Tacrolimus (immune suppressant) again, even though they had predicted that he would be off the immune suppressants by now. But it’s OK, we can live this pricey little pill.

The life-saving stem cells. About 12 million of them!

The only other ongoing consequence is that he has had to have several phlebotomies, which is a procedure to remove blood from the body. Because of all the blood transfusions he had prior to the transplant, he now has an overload of iron, so this is the way to remove the excess iron. That’s OK too. They can have his iron, we don’t want it. They just better leave his stem cells alone or they’ll have the Caregiver from Hell to deal with!  

Sierra, taking her dad for a walk...or to a bank. You never know about her. Day +20

This past Monday Dr. Marino did the honors of performing Larry’s one year bone marrow biopsy. We don’t have the results yet but we are confident that Ron’s stem cells have taken names and kicked ass and that The Big Guy is on his way to a healthy future.

For a little outing at Redrocks. Day +23

That being said, this will be my last post to this Caring Bridge site. I for one am definitely ready to move on. I did a little happy dance of my own a few days ago when I threw out that huge three-ring binder known as the Caregiver Handbook.  Now that school is out I’ll admit that I barely cracked it open and I surely would have flunked, had there been a written test. I tried to read it ~ I really did, but when I flipped it open to a page titled “Rectal Care”, I closed the book, swallowed what was making its way up my throat, and told him that he was so screwed. But pass I did ~ with flying colors, which I base solely on the fact that Larry still has a pulse and has never contracted a food borne illness. My work here is done and I told him last night…. “you $*%&#@% owe me. I just don’t ever want you to pay me back.”

Larry and his nurse, Stacy on the day he checked out of the hospital. Day +19

Larry and I both want to thank you all for following us on this inconceivable journey and for always offering your love, support, and prayers, which have helped us get through some of the toughest days of our lives. Your reaching out to him while he was in the hospital, and to me, when the dogs and I were toughing it out alone has carried us through some incredibly rough hours.

Julia and Larry ~ Day +21

Our gratitude first and foremost goes to his brother Ron, for the ultimate gift. To Dr. Nash, Dr. Matous, the nurses at CBCI, especially his fleeting angel, Meghan; we can’t even begin to express in words how thankful we are for your expertise. 

Ron aka The Donor! Day -2

Thank you to our families and friends, who came to Denver to be with us and who have been instrumental in our mental and emotional healing in ways they will never know.  I know that Joe and Shirley endured the pain right along with me. Watching chemo beat up on Larry was almost as brutal on us as it was on him. They never stopped praying or cheerleading and they had two dogs in this fight!

The Blue Gloved Group. Day -3

Love you and thank you—Sierra and Savannah, who called and face-timed with their dad EVERY SINGLE DAY. Those few minutes each day allowed him to step outside of the moment and to connect to the real world and to their lives.

We showed him a little sympathy and let him win one game. Day +5

To our little Paisley, who will never know what an important part she has played in her Cappy’s healing. For him to see her happily chatting about peacock ballerinas, her Jojo, and mermaids, was medicine. While most people who saw Larry commented on his weight loss, his hair—or lack of ~ his dwindling appetite, or his persistent weird rash, Paisley just wanted to know if he was he was coming to see her and did he want to see her Ballet Barbie and could she come stay in the bus with him. Her innocent oblivion was therapeutic.

A big dose of medicine in a small package!

 I’m guilty. I’ve looked at Larry and have seen “Cancer Patient” written on his forehead, yet Paisley was the one person who never saw his wounds. In her eyes, no matter how big the scar was he was already healed because he was never really sick. THAT, my friends is medicine.

A big hug goes to our dear friends Denny and Karen, who were there with us on DAY ZERO, which was the scariest day of our lives. They will never know how much it meant to us to have the support-love-camaraderie-distraction-dinner date on that day. There aren’t words and thank you doesn’t even begin to cover it.

Denny and Karen, with Larry, just hours after the transplant. Day Zero!

Here in Sheridan, we are most grateful to Dr. Marino and the Welch Cancer Center, whom have taken such good care of Larry, before and after the transplant. Since coming home last September Dr. Marino and his staff have been instrumental in making him transition from a patient to a survivor. (Damn….mascaras running now!)    

Rock Bottom...Day +100. No where to go from here but up!

This journey was not exactly on our itinerary of life, but after taking the detour together we know that we’ve traveled down a road that makes us really appreciate the prospect of our future. And it’s good. For that opportunity we are most grateful, to YOU, our family and our friends.

THANK YOU GUYS, LOVE YA, MEAN IT!
May God bless you all, he certainly did us!
Larry & Tammi

One year post transplant. Is it just me or does he look a new man? Day +361