So you know something is up after 6 years of avoiding a CF support group, and I found myself in one tonight. I don't want to claim that I loved it, but I did like hearing about the guy who was 4 months transplant. Not too far removed from where I am now. Dear Lord, this will be ok.
I got word that I will be staying throughout the weekend. Sicker than I have ever been and still trying to be ok with it. And before I leave I need to do a six minute walk to see where my oxygen is at so I can take some home with me. Oh plus get my handicap sticker so I can stay level with this cold weather coming up. Again, dear Lord, it will be ok.
Jeremy and I met with a member from the transplant team (a coordinator) yesterday to talk about a few things including what all happens. A scary mess of a meeting that left me overwhelmed and feeling very hopeless. I have fears of failing this evaluation and will let every down, including myself and family. Plus, then what happens when I have to look at my 3 year old knowing I can't continue the for her. Yes, I know to not think that way and to just kick some butt. But I just find myself with the major cases of the WHAT-IFS lately.
"You know you could not make it out of surgery, you have to prepare for that"....AHHHH!! How do you prepare for that? How do I say goodbye to so many people and make sure all the words I want to say are said and that they all know its ok if I die. How do I tell Jeremy that he will be good and that Laila will be ok and not to worry because he is a strong person? How do I hug my daughter thinking it may be the last time I hug her...or that she ever hugs her Mommy. How do you do that?! She needs a Mom. I wish I could hug her right now so that I could be ok at this moment.
Sometime reality is a big nasty thing. And listening to all that was reality. Jeremy and I are going to sit down together and with some family and figure out when the best time to schedule this work up/evaluation is. Yes, it will be coming up in the next few months...feb...march. So time to study for the biggest test in my life. What does that mean?
It means I work my buns off to do everything I can. I eat like crazy. Food is no longer just something for fun...its like medicine. When I am full, I need to grab that extra few forks full....and add butter to them. I start a monitored exercise in Hartford. Go someplace like the local hospital and work out while being put on oxygen and a heart monitor and having somebody tell me how and what to do. Start going into the hospital, even if Thanksgiving or a MI trip is around the corner...this comes first. Get more protein and more vitamins. The stronger I am and more I can prolong my life pre-transplant means the stronger I am and longer I can prolong my life post transplant.
Tears, fears, and a positive attitude. I need to get the old me back again.
Thinking of you, cassie, and laila. I've only gotten to meet you a few times, but I'm positive you inherited your family's strength, and that you can pull yourself through this like you have before. I don't want to say "good luck", it sounds so cheap, but you know what I mean, right? :)
ReplyDeleteYour story is inspirational to me. I stand with angie and denise, I believe in you, too. :)
Just read your article. You have the strength of a tiger. I know that God is watching over you and keeping you going in your strength. He is there fighting right along with you. Keep the faith, I know its hard at times, but you can do it. You are an inspiration to all of us. Love you.
ReplyDeleteCassie, I hope that when our family faces trouble I respond with the strength and grace that you exude. Hold your head high and be proud of yourself, but don't forget to be gracious with yourself as well.
ReplyDeleteAt times like these, sometimes we just need to fall to our knees and know the Lord will pick us up. The Runke family is thinking of you and praying for God to give you and your family the strength to get through. Joan and Dave Runke
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