by Ashley
You know the feeling where you’re so overwhelmed with important tasks and to do’s that you can’t do anything and you end up just taking a nap?
Yeah. That’s where I’m at. Not so much with the napping part (though it sounds nice). But, hello little bloggy! Here I am “talking” to you instead of putting my head down and pushing through some pretty important to do’s.
Let’s talk about yesterday.
Longest. Day. Of. My. Life.
Reeeeeeeaaaaaaaaallllly long.
Between my 2 siblings and I (3 of us total), I totally thought I was the most mentally prepared to face my Dad’s health issues. I’m not a super emotional person. I look at things scientifically. Matter-of-factly. I’m a realist.
So I went to this appointment feeling fully prepared to hear what I thought would be “worst case scenario.” I had already in my mind an idea of what I thought that scenario would be.
Nope.
I was wrong. So, so wrong.
It’s worse.
Prognosis is not good. Again, wanting to maintain some privacy for him and not give too many of his personal details, I’m going to be intentionally vague (you may be able to figure it out – which is fine – but I don’t want to just put it all out there on a silver platter).
My dad has a progressive, degenerative disease for which there is no cure. Eventually he will die of it (or complications related to it). Not today. Not tomorrow. But his life span has just been dramatically reduced. He just turned 59 in March. Quite young, relatively speaking.
I will also tell you that the thing he’s been diagnosed with can be genetic. If one inherits the gene mutations associated with this disease, there’s a 50/50 chance of developing it as some point.
It will cut life short. Most people are diagnosed in their 50s, and life expectancy at time of diagnosis ranges from 2-10 years, with most living in the 5-7 range. My dad managed to go undiagnosed for a long time. It’s unlikely he has 5 years. Probably closer to 2. If we’re lucky.
What does this mean for me?
Well, if I have the same gene sequences, there’s a 50% chance I’ll someday have the same thing. That means my life expectancy will be drastically cut. According to here my life expectancy is 78.7 years (white female born in 1983). But instead it might be closer to 55 or 60. 65 if I’m lucky.
What my Dad has is not curable at this time. There’s also no way to prevent it.
So I’m going to ask my doctor for a referral to a genetic counselor. I want to know if I have these gene mutations. If I have them it’s not a guarantee that I’m “doomed” (again – only 50% chance of developing the disease). But it will undoubtedly change the way I live my life. Knowing I may only be around until my girls are age 30; knowing I may not have the long retirement we all dream and plan for; knowing my life may go in a very different direction than what I would hope.
Unfortunately for this get-out-of-debt blog, many of these long-term implications are financial in nature. I certainly don’t want to leave my family in financial ruin (and I still have every intention of paying off all our debt). BUT I’m not going to put off vacations to once a decade. I’m not going to live bare bones with the hope that someday I’ll be able to live this fabulous life full of fruits and riches that may never end of happening.
Maybe I’m still in a bit of shock and some of these feelings will fade. The emotions are raw right now.
I’m devastated. For my Dad. For my siblings. For me. And for my daughters (God, please don’t let them have this gene mutation!!!)
Sorry to be such a downer today, but this is literally ALL I can think about and I always try to be open and honest with you all. It’d be completely phony to act like nothing is wrong when it feels like the ground has just opened up beneath me.
So emotions aside, let’s talk about genetics. And money. Specifically….money for genetic testing.
Anyone know anything about that? It’s probably expensive, huh?
I changed my insurance. I was going to do a Health Savings Account, but I had to switch to a PPO. There’s a chance my Dad may come to live with us for a bit and, if so, he’ll be my dependent and added to my insurance. He’ll need a lot of care so it makes an HSA not beneficial.
Plus, I think my PPO plan will pay for some genetic testing to be done. Remember when I had a genetic screening for the gene mutation responsible for breast and ovarian cancer? That was fully covered under my PPO and my new job’s coverage is the same plan (Blue Cross Blue Shield PPO), so I REALLY REALLY hope they’ll cover some additional genetic screening to be completed. I know this is an area of intense debate. Several commenters were against my last genetic screening. But every person is different. For me, I feel like I NEED to know.
Plus another perk, with the PPO plan a vasectomy is only $30! Remember when we had that conversation?
So I’m just chugging right along. Possible big financial changes ahead (particularly if my Dad does, indeed, move in with us. Still discussing options with the siblings right now). I don’t even know what a best case scenario looks like. There is no best case. Just a bunch of crappy, more crappy, or slightly less crappy options. Just a bunch of crap.
Is it Friday? Thank goodness for that at least! I plan to spend the weekend squeezing my daughters tightly, playing the tickle monster game all day, and just generally smothering them until they tell me to go away because I just want to soak in their sweet little toddler spirits. God bless children for being a rainbow in the midst of a storm!
