I'm worried. I'm scared. I'm constantly thinking about the time I have left with Spencer, more so recently. This is something that I try my hardest to put to the back of my mind. I don't spend every day thinking about his CF being terminal. I don't live my life with the reality that Spence and I may be facing new facts soon that his CF is, in fact, progressing to a very scary stage.
But within these last two months, I've had to face his CF head on and so many questions and concerns, thoughts and worries have come to my mind with the pattern that he has been stuck in. Just 4 short days ago we were told that an FEV1 of only 31% could very well be his new baseline, instead of the 35-37% FEV1 that he was blowing... occasionally reaching in the lower to mid 40's. I tell you what, that is a scary, scary number. I know that numbers do not at all mean everything. He says he doesn't feel like he's at 31% - and I'm overly grateful for that. But I know friends who are 31% and a little above that are thinking about and even talking to their doctors about a transplant..... Is this our new reality?
I can't help but wonder right now how much time Spencer and I have left. I feel like we've been living in some kind of denial... denial that he can get his numbers up, that he can get off oxygen... Maybe it is time that we face the facts that this disease is terminal, and that his cystic fibrosis is progressing. Is it time that we listen to the doctors and get it in our heads that there is seriously a chance that this pattern is what we're going to be experiencing for the rest of our lives? The pattern of entering the ER at LEAST once a month (within one month we entered 4 times) and have a 2 week clean out once a month, or sooner, like clock work? I don't WANT this to be reality! I'm not ready to accept it.
I know that the doctors can never, ever, be 100% sure about his prognosis. I have read so many blogs where people have been told that "this is it" but yet they have beaten all odds and turned around significantly. I pray to God and hope with all my heart that this is Spencer's case. That we've just had a very, VERY rough 2 months and things will start turning around... I have been trying my best to accept and understand that with this recent embolization his lung functions may have impermanently dropped a little. It's a 'side effect' of what could happen. That might explain his recent PFT numbers. scary, unfair... but life and we have to face it, and live it....
Sometimes I feel like the odds have really been against Spencer. He's been bleeding SO much recently and it's scary. (I know I have used the word 'scary' a lot in this post... but this is all raw, fresh... and it terrifies me of the future... near or far.) He was embolized... and just a few days later he started bleeding again. It seems like every time he starts up on his pulmozyme (a very important medication for him) he starts bleeding... Yikes. What does he do if he's unable to take the med. He gets SOO junked up without it and it's very, very hard for him to cough stuff up. If the mucus stays in - infection sets in and we're back in a cycle...
His life depends right now on compliance, exercise, and support and love from his friends and family. I cannot stress enough how important these things are.
First comes compliance... if he misses a treatment he misses a critical chance of getting the fresh mucus up and working to get the old stuff out. As I said before, if the mucus stays in there, infection sets in. Not only are his inhalers so, so important, but his oral meds are too. as well as his VEST, PEP, and huff coughing. Thats the first step and the basis of everything.... if he can't do these things, then it's a struggle to do the rest and have it effectively work.
Second.. but pretty much tied, if not exceeding the first is exercise... I hope that he can get in the swing of exercising with me with every ounce of energy that he has so that he can strengthen his heart and lungs, and get the junk out. His LIFE depends on working out. I have seen the improvement that a very hard working, successful rehab session over a few days can give him... It's raised his FEV1 significantly. I want to see that every, every day. Just think about the improvement that might be able to be made!!! It's so, so crucial.
Third... nearly equally important, is support. It's so hard for him to keep his spirits up to fight this fight without support and love from friends and family. He needs the encouragement every single day to KEEP ON GOING. to NOT GIVE UP. And he needs it more than ever when he is in the hospital. It doesn't matter that he is an adult, that he has me, that he is being taken care of by nurses.... it doesn't matter how young, old, sick, or healthy he is.. he is ALWAYS going to need that support.. And honestly - it's really been lacking from people. He's been feeling really down and that he can't please anyone. People - please understand that you need to CHERISH every SINGLE moment you get with Spencer. Understand that he NEEDS you. It may not seems like it will change much in the way of his health - but it DOES. I promise. When he gets phone calls and visitors... no matter if he's in the hospital or at home - he lights up. His day just gets 100% better. He focuses on his treatments so much better - because he realizes and knows that he has something worth working towards and living for.
I'm not done fighting for Spencer. I won't ever give up. I'm doing my best right now to focus on living life with him and cherishing every single day, second, moment that I get with him because I am starting to honestly realize how precious his life is... every moment counts... I find myself REALLY appreciating and loving specific moments - I don't want to lose them... I don't want to forget them. I want to remember every single one..
We see his doctor in about a week to hear the latest. It's an appointment to specifically discuss his prognosis, what to expect; present and future, if we're really looking at this being his new baseline... and what exactly, if she knows, has been going on and why he's been needing so frequent hospitalizations.
Wow.. I've really been going on, and on... But I just needed to express my feelings. Honestly - this blog doesn't even begin to cover my true feelings... I just can't express the multitude of emotions I've been feeling with every second of every day... I can only hope that things look up instead of going back into the whirlwind that we've been calling our life...............