Update from Colin

To say the last few years have been an emotional roller coaster would be the understatement of the century. The ups and downs, the back and forth... It has all been a process, and Heather has taken it in stride. About a week ago, we were told Heather has PTLD (transplant-related cancer) in her brain. We were transferred 3 miles across town to UPMC Shadyside. There, we were given her options for treatment. Everyone knows Heather is a complicated case, one that takes some of the best medical minds in the world to decipher. Together we discussed 3 different types of chemotherapy, and/or radiation. All have benefits and drawbacks. Chemo is tough on the heart and kidneys and leaves the body ripe for infection. The body can only take so much, and hers has been through the ringer. Radiation is a relatively painless process and much more targeted to a specific area, vs. chemo that travels throughout the blood stream. The decision was made to go forth with radiation. Radiation has its downsides.  It can leave you tired, run down, and there are concerns about long-term cognitive issues. Honestly, when it came down to it, it wasn't much of a decision.  Dr. Lieberman said Heather's body is not strong enough for chemotherapy.  In his words, "It might kill her."  The treatment plan is this: 10 treatments over two weeks, Monday through Friday, with the weekends off. As I write this we have 2 treatments in the books. I look into her eyes and see the woman I married behind them, knowing full well she can hear and she knows what I'm saying. It's just a battle for her to reply. I've said it before and will continue to say how much this girl impresses me. She is strong, caring, with spirit that won't quit and a heart of gold. Through all of this, she will prevail. Failure is not an option and neither of us know the meaning of the word quit. 

Thank you to everyone for all the support and prayers all of you are amazing.  

Wednesday June 14

Nothing new to report really.  Dr Cruz says not to worry about the spot on my brain.  They are still waiting on the results from the spinal tap.   

So basically I have no answers yet and it's frustrating.  Monday night I passed out.  Luckily Colin was holding on to me when it happened and was able to catch me before I fell.   Last night the same thing happened.  They are calling a cardiologist to see me to see if it's something to do with my heart.  They are also reviewing all of my meds to see if maybe it's medicine related.

I have just been hanging out in my room with Colin and waiting.   It's getting old but it's what we have to do.   

I'll post more later.   Have a good day!!   

Thursday June 8

I know it has been a long time since I've posted.   A lot had gone on since my last post.  I'm at a loss for words.

Long story short....the beginning of may I was in the hospital getting ready to be discharged.   All of a sudden I couldn't breathe.   I looked up and saw the aide.   I told him I can't breathe and that's all I remember.   The next few days were a complete blurr.   I was in the icu.    I remember holding Colin's hand and it happening again.  Everything in my body froze and I couldn't breathe.   I don't remember anything except for him telling me it would be ok.  He was squeezing my hand and rubbing it.  That's the last thing i remember.  

I woke up a day or two later.   They tried to explain to me what happened but I still don't understand.   Something about too much fluid around my heart.  No one can explain how or why.  They have explained it to me multiple times but I still can't comprehend what I'm being told.  Basically it is called flash pulmonary adema.  It's when your lungs fill up with fluid.   So I was basically drowning myself.   

I have been doing better.  My lungs are clear.  I have been feeling better.  Last week I started having issues with my head being heavy.   They did an MRI and found a spot.  They don't know what the spot is so they did a lumbar puncture yesterday to try and determine what it is.   It was not a very comfortable procedure but I did it.  We aren't going to get the results back until after the weekend of course.  I will post more when we learn more.   Sorry again for being mia.