Friday, February 3, 2012

What I miss and the pain I feel

There are so many things that I realize I miss that I never once payed attention to before... and if I did pay attention to them - I told myself and Spencer several times that "I won't miss this!!!"

Truth is... I miss it all. And today I'm really missing those specific things that I didn't think I'd miss.

*The sound of his loud neb machine - I could never hear the TV, my music, sometimes I couldn't focus because this noise would be right in my ear... But now? I wish I had an excuse not to listen to my music or watch TV. It was a reminder that he was alive.

*The constant rumbling of his oxygen machine - we started to call it a white noise maker - This was something that I guess I didn't hate all that much, because it really did help me sleep, but at times, I just missed the silence. Sometimes I hated a constant noise. But now? I wish I could hear that rumbling of the compressor. The silence is just too deafening now. It was a reminder that he was alive.

*Taking the time out to do treatments. I'll admit. A lot of the time I got angry because we couldn't stay out for more than 3-4 hours before Spencer HAD to get home to do his Vest and Albuterol. We would take a portable nebulizer, but sometimes he just really needed to be at home so that he could relax and sometimes put on his vest to get the crap out of his lungs. Sometimes I hated him having to stay up an extra 40-45 minutes to do his nightly treatment. I wanted him next to me when I went to bed. But now? I wish I actually had a valid excuse not to go to bed and to come home early. Before we came home early for him, and because we had no other choice... now? I come home early, (or don't go out at all) because I'm just not up to being out with friends or doing other things because I miss him so much and wish he could be here with me. Before it was having to (only because I didn't want to sleep without him, and sometimes couldn't...) stay up that extra 45 minutes for a treatment... but now it's staying up 2 hours later because I just can't fall asleep without him. And unfortunately that is going to be reality for a heck of a long time. It was a reminder that he was alive.

*The smell of his TOBI - Yes I know.. It sounds unusual. But the smell of his TOBI really drove me crazy. It made me sneeze like crazy, get congested, and cough. (I can't even imagine how HE felt having to actually inhale it!!!!). But I have heard some people complain, recently, how much they hate the smell of their husbands or child's medications. But now? Of course I didn't enjoy that smell twice a day but I wouldn't mind the smell of just one more time. It was that antibiotic that helped his lungs fight the pseudomonas and helped him to breathe in the long run. It was a reminder that he was alive.

*His Oxygen Tanks - I can't tell you how much I despised carrying the oxygen tanks in and out of the car, the house, and the hospital. Every single time we went out we had to juggle 5-6 oxygen tanks (sometimes more!!!) and man, the more of those you lift the heavier they get! Once a week I would have to take 10-15 tanks in from the house to outside of our door for the company to come and pick up because we were their first stop at 7AM and I would either be in the shower, or we would both still be asleep. And then when I got home that evening. I had to carry 10-15 tanks from outside to inside of our house. It was a pain and I would get angry that Spencer wasn't able to do this. I knew it wasn't his fault, but I hated that he wasn't able to... But now? I wish I could carry an oxygen tank out to the car again. It was a reminder that he was alive. I was in my grandpas car the other day and he had a mini oxygen tank in the passenger seat. I just stopped for a quick second and started at it. Raw emotion of what I actually miss.

*Two week hospital stays - When Spencer got admitted, 9 times out of 10, I despised it and it really upset me. It took away time that we could spend together outside or doing something fun. It kind of put life on pause for 2-3 weeks. And when Spencer was getting admitted once, and even sometimes twice a month that was just TOO MUCH. Unfortunately there was little we could do to prevent that, especially in the last year of his life. He tried his hardest to stay out of that place, but it was just inevitable, we never could avoid it. But now? Who knew that the result of less frequent to no more hospital stays was death? -sigh- The hospital staff became not only Spencer's family... but my family as well. I miss the people that we worked with every time he was admitted. I miss their smiles and encouraging words. I miss the delay in getting cereal and other things that we needed. I miss the quality times that we would spend together watching movies and eating snacks from the cafeteria. Even though I got SICK and TIRED of that hospital food, especially since I was eating it twice a day every day for 3 months, I miss it and I wish I could eat it again. Being in the hospital so frequently, fighting for his life was a reminder that he was alive.

*The sound of his cough - I always thought that Spencer had a unique cough. It wasn't quite like any other CFers that I have heard. I think mainly because when he coughed, it would always turn into a coughing spasm for 1-5 minutes. I didn't like when he coughed because it was a reminder that he was sick and it really hurt my heart to hear him cough so much. I would also get annoyed sometimes because when we would be trying to listen to something he would end up coughing a whole bunch and I'd miss what was trying to be said. But now? I long to have that cough wake me up in the middle of the night, or to interrupt a conversation in some way or another. And even though it may have been a reminder that he was sick.... It was a reminder that he was alive.

There are other things that I miss; many, many things - I can't even count how many things I miss.. unusual or not. But I think you get the gist. All of these things were reminders that Spencer was alive and breathing. I no longer have those reminders because, and there is no way to sugar coat this, Spencer is dead.... and those words hurts my heart more than words can describe.

The pain that I feel behind those 3 words is completely indescribable and 100% unimaginable.

[*side note! If you have felt the loss of a loved one, be it a grandparent, parent, child, or friend - I can guarantee that you can not relate to exactly how I can feel just as I cannot relate to exactly how you feel. (keep reading) Even if you have lost your spouse, you can't possibly know the pain that I feel. (again, keep reading) Why? Because as a friend said to me when Spencer died.... the feelings you go through and the pain you feel is so specific and unique to the situation and to the relationship. I am not for a second doubting that you don't feel the pain of losing a loved one.. but I am just saying that your pain and my pain is unique and different from each others. Only we know how we feel. Please don't try to tell me that you understand completely and totally my feelings and my pain... I'm only saying this because it hurts me when you tell me you understand the way that I feel... *Side note over...]

That pain that I feel is even too much for me to bear and so I can't even begin to feel the magnitude of losing him. It only comes out as small, stabbing, and very painful bursts beyond my control. These feelings come at very random times and they are very rare, I've only experienced them three times in the, nearly, 2 months Spencer has been gone. But even though they don't come often, they are oh-so real and the worse pain I have ever in my life felt. Many times tears just roll down my face. I cry more tears than I ever have and the majority of the time I don't even make a sound. But the cries and gasps and moans that do escape my mouth are those of an absolutely broken and shattered heart. I never want to hear them because it is truly pain beyond my comfort level.. beyond my control... and those sounds scare me because I know at that moment I am totally vulnerable and ready to break at any point.

I just want to touch on one other thing because I really need to express this and it's to no fault of ANYONE.

All this news of the new drug Kalydeco is really getting to me, I think. Of course I am ecstatic for those 4% with the mutation who are able to take this medication. I wish the best for them and I know there are better things to come. More people will be able to take a medication similar to this and live a healthier life.
So what gets to me about this?
Spencer doesn't have this opportunity. Granted, he didn't have the specific mutation and so he wouldn't be eligible to Kalydeco right now..... but this is all happening SO soon after he died. I know that the damage that was done is permanent, and even if he WERE to be able to take Kalydeco he would still need a transplant... but lets get around that fact for a minute.

And this is all really hard for me to describe so I hope maybe this will all make sense.... but I just struggle to know that if he wouldn't have gotten sick back in that awful day in September, he might still be with me today.. and he might have the opportunity to live a better life with this medication. I guess I just ask why couldn't he have been given a little bit longer of "Good" health so he could improve and soon get to take this medication. Everyone said how much room for improvement he had and how possible getting healthier would be. No one said it would be easy... but they truly thought it was possible.... and Spencer was actually doing a little bit better before, and after, we got married. What if that would have continued?
I guess just to know that this medication is now available, actually in patients hands, and a cure is literally fingertips away.... And to know that Spencer isn't alive anymore to be able to get that medication and possibly a cure really hurts my heart. In fact, I find myself getting a little angry. I just, of course wish for a better and different outcome. -sigh-

That's just some feelings I've been having recently. I needed to share them. I've been feeling pretty numb this week and I haven't had many feelings to express so now that I actually felt something, I wanted to write it down.

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