I blog because it's cathartic.
First time = heart failure & LVAD
Second time = heart transplant
Third time = pheochromocytoma tumor
With Kevin's surgery approaching for this tumor to be removed, I'd honestly like to forget everything. Now, I'm sure there are people reading this thinking "oh she should be happy they found the cause of his heart failure." Well, let me tell YOU something... we closed the god damn door on heart failure right after he received his new heart. This new tumor being detected just re-opened that very door as well as turning our lives upside down once again. I'm tired of people walking up to me telling me how I SHOULD feel about this tumor. I'm exhausted over the conversations about the tumor and it's actually caused insomnia for me.
I'm just asking for someone for one minute to put themselves in my shoes or Kevin's shoes for that matter. Imagine your post transplant life is going smoothly then SLAP right in the face. Kinda like when that ICU doctor came into the room to tell me Kevin had coded, was on life support, and how he took all of the air out of that waiting room. Let's add to the fact that it's one week from the anniversary of his heart failure. October 7 is a day I really don't want to remember but the memory of it all just isn't as easily erasable now with this tumor showing up.
How am I doing? Another question I can't stand. Talk to me AFTER the tumor has been removed and Kevin is sitting up in bed complaining about how hot it is in his hospital room. THEN and only then will I truly be able to answer the question "how am I doing?" I need a guarantee that these episodes won't be coming back. It rips me apart inside to see Kevin in so much pain. I need some sort of reassurance that we will resume to our usual every day activities soon after discharge. That the only time we'll see the inside of a hospital again is when Kevin has surgery on his arm/hand.
This time around we prepared like we did for transplant. Organized. Set up babysitters. Preschool drop off/pick up. His surgery originally planned for this past Monday was postponed. Supposed to be admitted today. That too has changed. We just have to arrive early before his surgery. We understand things change but this put a wrench in the already organized planning for our boys. Scrambling around at the last minute is something I loathe. Asking for favors last minute drives me insane because I hate asking for help and then to do it last minute.... all this just adds to my stress level.
Our boys... our sweet little Star Wars loving boys. Explaining to them this time around was somewhat humorous. It went something like this:
Us - "Daddy has to go back to the hospital again."
Kaeden - "You're getting a new heart AGAIN?"
Us - "No, Daddy isn't getting another new heart."
Quinton - "You're getting your arm fixed then?"
Us - "No, not that either. Daddy has to have an operation to have a tumor removed. The doctors found a tumor inside Daddy."
Both of them looked at us and said "tumor? Oh OK."
I'm guessing tumor doesn't sound as bad to a 4 yr old as transplant does but the emotions are running high for sure. The constant chatter about Daddy this and Daddy that....telling their friends that Daddy has a new heart but he's getting an operation in the hospital. Or that they're sad during the day because they're going to miss us both....Mommy visiting Daddy and Daddy in the hospital.
In the end, I'd like to say that heart transplant seems like a breeze compared to what we're enduring now. Where there is a will, there is a way. The positive in me will always shine through. The love Kevin and I share and the love we have for our boys will always carry us through. And we WILL get through this because we owe it to our donor family. We got our second chance....this tumor is just a bump in the road of our long life together.