With an infinitely heavy heart, it's time I make a point to post that my husband passed away just over a month ago. The pain seems to grow each day despite being told it gets better over time. Forget the hole in my heart notion, there is an absolutely massive void in the essence of my being. I can feel it in my chest and in my stomach, I just feel like someone is ringing me out like a used rag. I thought I'd run out of tears at this point, but now I sit here with an excruciating headache from the amount of crying I did today to accompany the panic attack that I had.
Nothing can prepare a person to go through this. I think I've been kidding myself as I put on the brave face and discuss how "beautiful" his passing was with all things considered. While it is true that it was beautiful, I still feel so incredibly robbed. I can't live in what-if's but I am definitely present in a place of wishing that wishes could be granted and I could have had one last conversation with him, one last hour to hold his hand and look into his eyes and kiss his cheek, and run my fingers through his beard.
I wish I knew when this would get better, when the things we enjoyed together won't flood me with pain and intense yearning for him, and instead will make me smile remember how much we loved sharing life together. If someone could say "by ______ date all of this will be easier" I think that would be so helpful... right now it just feels like every single day is more painful than the last and every day seems longer, more empty, more lonely, and more distanced from the life I shared with my amazing husband. It all just happened so fast. Monday he was told it was back and they couldn't treat it and by Wednesday night he was immobile and on life support and unable to look at us or speak. I've lost all my voicemails I had saved from him... I get so wrapped up in worrying about forgetting him that I think about it and remember him so vividly that it floods me with pain and yearning for him. Yearning isn't even the right word to describe the intense emotion I have when missing him, every literal ounce of my being aches for him... every last bit of me.
I don't want to "be strong" and I'm not strong, I get "reminded" that I'm "strong" and that I'll make it through, but I just want it to be okay to hurt like I do and I want the hurt to happen so that I can get through it but at the same time it is so indescribably painful that I can't bear to put myself through it so I do my best to stay busy and out so that it forces me to be "brave" and "strong"... which in turn means that the very second I'm by myself I'm absolutely falling apart. It is a super vicious cycle, I don't want to feel that pain so I make sure I'm not alone, but because I am so busy and don't allow myself that time it becomes that much more intensified when it does happen and then I end up driving on the freeway having a full blown anxiety attack like I did today and just in so much excruciating pain missing him.
I don't know how to balance it. I don't know how much I need to give myself to get through it, obviously I'm not giving myself enough time when I have these moments because it keeps happening. I just want to know when it I'll be able to control it more. I can't be at work and have these random outbursts, I can't really be driving and have them either which is rather frequent... certainly not safe in that situation, but what can I do? I wouldn't wish this feeling on my enemy (not that I have those), this kind of pain and grief outweighs any other.
I miss and love my husband so much, I remind myself that it hurts because I loved him... the more I loved the more it hurts, the more I was loved the more I miss him and I can say loved and was loved more than I ever imagined possible. I officially feel so lost and out of touch with the world and life at the moment... just watching it pass by while I feel frozen in this place until I can figure out how the balancing act works... just how to allow myself to experience and heal while not losing touch with day to day life. That's the key that I just don't have yet.
Monday, September 21, 2015
Sunday, January 25, 2015
sidelining life
Lately I feel as if I have just been present in the world and things just happen to me and I'm left just having to deal with it as it comes. I feel like my days have just been full of reaction vs. proaction and this has really begun to compound and get to me. I fear that the defense mechanism that gets developed in these situations is the numbing of feelings in order to mask pain/emotions. It's really important that without being a cry baby, I be aware of what's going on and how it impacts me.
My husband has relapsed again so we find ourselves back in the hospital (since Jan 9th) which means that I'm at the hospital, go to work, go to school, back at the hospital, repeat, repeat, and repeat. The in-laws are at the house evening-->morning and taking care of the animals and whatnot which is nice (seriously, a God send because I don't know what I'd do if someone wasn't there to help in that sense) and they keep Tom company during the day while I'm at work, but it's just bizarre to not be home. I feel a sense of disconnect to my own life at the moment. I have nothing to do with my house, and obviously I have no part in how the hospital operates; so I take that as it comes with my husband's health status and how he's responding. Work and school are also of course just busy and everything is assigned to you and full of expectations, yada yada.
Depending on how Tom responds and recovers from all of this, I may only need a small family leave, may end up maxing out on leave, do I end up having to quit? Who knows?! As a virgo and an oldest child, I can go with the flow, but I do require some amount of foresight and a plan in order to be ready to be flexible when needed... and at the moment, that does not exist. I can't even throw my husband the birthday party I wanted to because he's so immune-compromised! I'm sure, when I think about it, that really it boils down to me feeling very isolated. While I know my family is a phone call away, it isn't quite the same as getting to enjoy the physical presence of familiarity and comfort. Yes, I have the support of Tom's family and it is definitely the best thing for him to have them here, but I think anyone would agree having your own family there is always better and obviously the rapport is quite a bit different.
It's really hard to explain how even the smallest of things like household errands or chores just provide some sense of normalcy and while it's wonderful to have the support and eagerness of people to help... sometimes you just need to be able to do something that is even remotely reminiscent of what life was like when it was half way normal. That being said, hopefully tomorrow can be as good as possible. Hoping to start the husband's birthday off by fetching some delicious breakfast for him because prior to the relapse news I had planned to take him out to breakfast (because we're doing a workshop at work tomorrow night). I've arranged for anyone and everyone to send cards his way for his birthday so I'm hoping that's a great and uplifting surprise for him.
Surely we must be entering into the smooth sailing waters here soon. You know, the part where he ends up cured and healthy and we can all just go about to where our lives left off almost three years ago and Tom can be a "normal 28 year-old" as he has mentioned. I can't even imagine what it must be like in his shoes. I am over here worried sick and frantic about how hard all of this is on him and stressed about his recovery and desperately wishing and praying him to be better and cured... but I don't have to be the one in the hot seat who is likely to be worrying or thinking about what life will look like for others, thinking about how we wish we could have travelled more or done more of whatever, etc. I could not imagine that. Things are certainly put into perspective in terms of values in these kind of situations.
My husband has relapsed again so we find ourselves back in the hospital (since Jan 9th) which means that I'm at the hospital, go to work, go to school, back at the hospital, repeat, repeat, and repeat. The in-laws are at the house evening-->morning and taking care of the animals and whatnot which is nice (seriously, a God send because I don't know what I'd do if someone wasn't there to help in that sense) and they keep Tom company during the day while I'm at work, but it's just bizarre to not be home. I feel a sense of disconnect to my own life at the moment. I have nothing to do with my house, and obviously I have no part in how the hospital operates; so I take that as it comes with my husband's health status and how he's responding. Work and school are also of course just busy and everything is assigned to you and full of expectations, yada yada.
Depending on how Tom responds and recovers from all of this, I may only need a small family leave, may end up maxing out on leave, do I end up having to quit? Who knows?! As a virgo and an oldest child, I can go with the flow, but I do require some amount of foresight and a plan in order to be ready to be flexible when needed... and at the moment, that does not exist. I can't even throw my husband the birthday party I wanted to because he's so immune-compromised! I'm sure, when I think about it, that really it boils down to me feeling very isolated. While I know my family is a phone call away, it isn't quite the same as getting to enjoy the physical presence of familiarity and comfort. Yes, I have the support of Tom's family and it is definitely the best thing for him to have them here, but I think anyone would agree having your own family there is always better and obviously the rapport is quite a bit different.
It's really hard to explain how even the smallest of things like household errands or chores just provide some sense of normalcy and while it's wonderful to have the support and eagerness of people to help... sometimes you just need to be able to do something that is even remotely reminiscent of what life was like when it was half way normal. That being said, hopefully tomorrow can be as good as possible. Hoping to start the husband's birthday off by fetching some delicious breakfast for him because prior to the relapse news I had planned to take him out to breakfast (because we're doing a workshop at work tomorrow night). I've arranged for anyone and everyone to send cards his way for his birthday so I'm hoping that's a great and uplifting surprise for him.
Surely we must be entering into the smooth sailing waters here soon. You know, the part where he ends up cured and healthy and we can all just go about to where our lives left off almost three years ago and Tom can be a "normal 28 year-old" as he has mentioned. I can't even imagine what it must be like in his shoes. I am over here worried sick and frantic about how hard all of this is on him and stressed about his recovery and desperately wishing and praying him to be better and cured... but I don't have to be the one in the hot seat who is likely to be worrying or thinking about what life will look like for others, thinking about how we wish we could have travelled more or done more of whatever, etc. I could not imagine that. Things are certainly put into perspective in terms of values in these kind of situations.
Friday, August 1, 2014
Post Second Transplant
Well we've made it through the second transplant and we're told that Tom may be discharged as soon as this coming Tuesday which would be day +19 which I believe is about where he was last time and to say this is the second time he's done this... that's pretty darn good!
He only spent one day (as opposed to the 4-7 they project) bottomed out on white blood cell counts (0.0). He's been extremely fatigued, has bone aches, and is pretty nauseas on and off through the days, but his counts are doing really well. He required a lot of blood transfusions last year around his transplant and he's only had one so far this time and two platelet transfusions. I'd say it's all looking very positive, the doctor seems thrilled anyway.
I've been fortunate enough to be able to be off of work during this time so I only have to leave during the times that I have class, which happens to only be two nights a week. There's a bit of anxiety surrounding his return home, one being that I'll also be returning to work and having to place a lot of faith in someone else (his brother) to be the caregiver he needs. Now, it's not that I feel like anyone else is incapable, I think it's more the worry of something going array and me being at work and unable to help. I'm sure things will be fine and we will definitely make it work... I just hope his recovery continues to be on the up and up and he's soon back and able to do things on his own.
It may seem to go without saying, but I can't say enough how much I pray and hope that this does the trick and he doesn't get any more secondary infections and the leukemia is gone forever and he can just be healthy and live a long and normal life. I am so fearful of that not being the case but I feel so good about this transplant I think this is the real deal and he's going to be cured. I guess time will tell.
He only spent one day (as opposed to the 4-7 they project) bottomed out on white blood cell counts (0.0). He's been extremely fatigued, has bone aches, and is pretty nauseas on and off through the days, but his counts are doing really well. He required a lot of blood transfusions last year around his transplant and he's only had one so far this time and two platelet transfusions. I'd say it's all looking very positive, the doctor seems thrilled anyway.
I've been fortunate enough to be able to be off of work during this time so I only have to leave during the times that I have class, which happens to only be two nights a week. There's a bit of anxiety surrounding his return home, one being that I'll also be returning to work and having to place a lot of faith in someone else (his brother) to be the caregiver he needs. Now, it's not that I feel like anyone else is incapable, I think it's more the worry of something going array and me being at work and unable to help. I'm sure things will be fine and we will definitely make it work... I just hope his recovery continues to be on the up and up and he's soon back and able to do things on his own.
It may seem to go without saying, but I can't say enough how much I pray and hope that this does the trick and he doesn't get any more secondary infections and the leukemia is gone forever and he can just be healthy and live a long and normal life. I am so fearful of that not being the case but I feel so good about this transplant I think this is the real deal and he's going to be cured. I guess time will tell.
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