This floating decision of when to list has its claws in me. I'm suffocated by it while still finding sources of denial strong enough to let me have a good time some of the time. Thank God for the survival instinct of the mind/body.
I've found such comfort in my home routine. Too much? Maybe. I spend the whole day managing a treatment schedule and fitting in things that feel 'useful' like say.... paying bills, emptying the dishwasher, or looking into if Apple will grant me all my songs back from my grape juice soaked ipod (they will)..
Today became a scheduled coffee date with old coworkers. I call them my "labbies" because we worked in a lab together before I left 3 years ago for CF reasons. I love them. They, interestingly, both don't have facebook. A fact that maybe is a big deal, or isnt', but to me it is because I get all of my outside world info from there. From there I try and help people. From there I have ups and downs and laugh at peoples jokes and share their lives and mine. Right now I can't seem to update my status about my outing because it feels silly. I'm being reminded of what life was before being this sick and homebound.
After 4 hours at a coffee shop, I feel drained. Headache, frequently coughing, thirsty (despite my hot chocolate from there) and weak. I did not wear my oxygen, but I brought it in labbie #1's car when I was picked up... for comfort. I worried about becoming anxious, as I do almost always now when going out. I wasn't sure if my excitement at seeing them would overcome it. It didn't, but I masked it as best I could and got over it quicker than usual.
Labbie #2 is pregnant. So is everyone else around me. That's why I called this post "new life". They get babies, I get lungs. We all get the same thing sort of.. but of course I'd trade in a millisecond. I want children so bad.
I still have gotten nowhere with my listing plan. Nowhere except that the doc's and I have agreed that at the very least, I must get a handle on my anxiety before I sign. I think this is the only way, and yet as proud and proactive as this new choice has felt, I know that theres' a part of me that celebrates simply because the earliest anxiety appt I could get was March.. and that means more time without being listed. I'm ashamed of feeling that way. I want to be brave and eager.
I suspect that spring is going to bring more and more confirmation that life is not what it used to be.. I need that. I need to see it often so that I can't deny anything anymore.
Friday, February 18, 2011
Thursday, February 10, 2011
Answer
I'm reluctant to write this post at all because although I received my news, I am still in limbo as to exactly what to do. In hindsight, I guess I built up this news so big that I didn't think about how I might feel after getting it.
They want to list me.
The exact words were something like "we think its an ok time to list for you". The call was very short, and wrapped in her words were careful tones and gentle breaks that were meant for someone who is getting what they don't want to hear. In her 4 or 5 sentences she even said "we know how you feel about this.. so take your time, talk to your family, talk to the docs at stmikes, if theres anything you want to do, take time and do it. this is not urgent for you'. My dad actually spoke to her as well, and was told that it is common for patients to take 2-3 months to digest the decision and come sign the papers. I am not alone in my hesitency.
That said, a few things go through my mind at this time. First is an irrational suprise. I, and my family, KNEW I was close, but didn't expect this answer probably mostly because in august not only was I "too healthy for the list", but I was too healthy for them to even investigate me. I was not allowed to assess. Clearly that result was a mistake that probably was directly related to one single persons choice, but it doesn't make it mess with your mind any less and I am still quite angry about my emotional rollercoaster so far (and I know this is the tip of a very large iceberg!). I am not much sicker now than I was in August.
Another thing I think about is that a part of me knows I can't do another winter without being listed. I'm not saying I can't "do another winter", just that I know that by next winter, I wont be comfortable. I dont know why I get that feeling, but I do.
Another thought that goes through my head is my sisters pregnancy. I only wish she was due sooner so that I could with confidence tell the transplant hospital that I will wait.. 2months and see my neice/nephew and let my sister get through her pregnancy relatively stress free, and then go for it. Unfortunately for all of us, there are still 5 whole months to wait.
All of these things I'm saying will no doubt inspire opinions in my readers, and please be kind if you plan to share them in the comments. Please, even if advising me (which I am very happy to receive, don't get me wrong). Please word things carefully. I'm in an emotional place. This decision is never easy. We know what the risks are, and they are not small. I may make a bad decision. At the same time, CF is so unpredictable, no choice is decidedly "right". I could list now and be in perfect shape for my surgery. I could list now and still die waiting for my call. I could list later, get more pre-tx time, and be smart because I end up dying during surgery. I could list later and it could be the reason for my death. There simply is no "right", only stats, and odds, and experience with which to work with.
For now, I've decided that step-by-step is all I can do. I've been waiting for this news to book regular clinic. I'm not sure why I felt it made sense to put off clinic until I got the news, but I did. I am going to get in there ASAP, and work on talking to them about anxiety and what I can do in this difficult phase. I am going to get them to elaborate for me what I didn't get to go into detail about on the phone. I am aware that in many ways I am a super-ideal candidate, especially now, but basically overall. My blood type is A+, I am cepacia negative, I have few exaccerbations and ivs, and I have no allergies, intolerances, or CFRD. The one factor I thought I would have against me was my size. I am short, but I learned during my "news" phone call that my lungs are not small at all. Apparently they are 5L. I find this hard to believe, but it works in my favour. This is oddly my concern. I think if I were expecting a longer wait (I was told by the coordinator I would not expect that most likely) it would be easier to list.
The excuses keep coming to me but I realize I am on the runway and I must take off while the window is open. Please think of me and hope that I can find a way to make the right decision.
They want to list me.
The exact words were something like "we think its an ok time to list for you". The call was very short, and wrapped in her words were careful tones and gentle breaks that were meant for someone who is getting what they don't want to hear. In her 4 or 5 sentences she even said "we know how you feel about this.. so take your time, talk to your family, talk to the docs at stmikes, if theres anything you want to do, take time and do it. this is not urgent for you'. My dad actually spoke to her as well, and was told that it is common for patients to take 2-3 months to digest the decision and come sign the papers. I am not alone in my hesitency.
That said, a few things go through my mind at this time. First is an irrational suprise. I, and my family, KNEW I was close, but didn't expect this answer probably mostly because in august not only was I "too healthy for the list", but I was too healthy for them to even investigate me. I was not allowed to assess. Clearly that result was a mistake that probably was directly related to one single persons choice, but it doesn't make it mess with your mind any less and I am still quite angry about my emotional rollercoaster so far (and I know this is the tip of a very large iceberg!). I am not much sicker now than I was in August.
Another thing I think about is that a part of me knows I can't do another winter without being listed. I'm not saying I can't "do another winter", just that I know that by next winter, I wont be comfortable. I dont know why I get that feeling, but I do.
Another thought that goes through my head is my sisters pregnancy. I only wish she was due sooner so that I could with confidence tell the transplant hospital that I will wait.. 2months and see my neice/nephew and let my sister get through her pregnancy relatively stress free, and then go for it. Unfortunately for all of us, there are still 5 whole months to wait.
All of these things I'm saying will no doubt inspire opinions in my readers, and please be kind if you plan to share them in the comments. Please, even if advising me (which I am very happy to receive, don't get me wrong). Please word things carefully. I'm in an emotional place. This decision is never easy. We know what the risks are, and they are not small. I may make a bad decision. At the same time, CF is so unpredictable, no choice is decidedly "right". I could list now and be in perfect shape for my surgery. I could list now and still die waiting for my call. I could list later, get more pre-tx time, and be smart because I end up dying during surgery. I could list later and it could be the reason for my death. There simply is no "right", only stats, and odds, and experience with which to work with.
For now, I've decided that step-by-step is all I can do. I've been waiting for this news to book regular clinic. I'm not sure why I felt it made sense to put off clinic until I got the news, but I did. I am going to get in there ASAP, and work on talking to them about anxiety and what I can do in this difficult phase. I am going to get them to elaborate for me what I didn't get to go into detail about on the phone. I am aware that in many ways I am a super-ideal candidate, especially now, but basically overall. My blood type is A+, I am cepacia negative, I have few exaccerbations and ivs, and I have no allergies, intolerances, or CFRD. The one factor I thought I would have against me was my size. I am short, but I learned during my "news" phone call that my lungs are not small at all. Apparently they are 5L. I find this hard to believe, but it works in my favour. This is oddly my concern. I think if I were expecting a longer wait (I was told by the coordinator I would not expect that most likely) it would be easier to list.
The excuses keep coming to me but I realize I am on the runway and I must take off while the window is open. Please think of me and hope that I can find a way to make the right decision.
Thursday, February 3, 2011
While I wait..
Still awaiting the call for the decision on my listing.
In the meantime, some close CF friends have had some big experiences lately (ranging from getting 'the call' to some terrible news while in hospital) that have me reviewing this crazy battle we fight and the love we share.
Here's the Great Strides walk VIDEO my sister created for my team back in 2009 on my birthday. She really captured every emotion I had/have in creating this and I'm grateful for this and her (& Taylor Swift for the suprisingly fitting song).
Enjoy.
In the meantime, some close CF friends have had some big experiences lately (ranging from getting 'the call' to some terrible news while in hospital) that have me reviewing this crazy battle we fight and the love we share.
Here's the Great Strides walk VIDEO my sister created for my team back in 2009 on my birthday. She really captured every emotion I had/have in creating this and I'm grateful for this and her (& Taylor Swift for the suprisingly fitting song).
Enjoy.
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