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.
Sunday, January 25, 2015
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.
Tuesday, June 17, 2014
Keeping the Norm
As our significant others go through this journey and us along side of them, we lose sight of the "normal" life. Most of us at one point took for granted the ability to wake up carefree and go about our days as they came and not have to put too much into it. We could take on our days and live the adventures it brought.
Now we are constantly worried, no matter how good our patient is feeling: "Did they take their pills this morning?" "Did they bring enough nausea medicine for this trip? What if we end up staying the night?" "Will they be okay by themselves while I'm at work?" "Oh God they're not answering their phone, did something happen or are they just taking a nap?!" We must now plan our days based on how the patient feels every morning, check their meds to make sure they've got enough, make sure they're set up for their day depending on how they feel (do they need meals made before we leave or do they feel able to serve themselves), do we need a back up caregiver for the day, know that we're in a place they can get a hold of us if needed, etc.
Amidst all of this, we try desperately to grasp at the straws left in our memories of what normal felt like. We go back to work, we leave tasks for our significant others, we plan things for our time together (that doesn't involve crowds or dodgy food), we try our best to make ourselves and our significant other feel like they aren't cancer patients. This becomes especially hard around times of important tests/results.
Tom has a bone marrow biopsy this coming Friday which will let us know if he's attained remission again and if he can go forward with the planned second stem cell transplant. I'm very torn on the results day. I've planned a getaway trip to get him (and myself) relaxed going into this transplant. The day we leave for it may likely be the day he gets his results. On the one hand, I don't want him worrying all weekend about his results, it would be wonderful if we got great news before leaving. On the other hand, if (God forbid) it wasn't good news it may just ruin the trip all together.
In the meantime, I've been giving Tom "homework assignments" as he is at home while he's recovering from chemo and getting ready for transplant. Homework assignment number one is that he (the car enthusiast) narrow down which car we will be getting next as our lease is up in a few months. This has kept him busy with research and on the weekend we went and did some test drives. This was a fun assignment. When he's finished with this one, the next assignment is for him to make a list of things to do in the next five years, be it school, travel, etc. It's been a positive and fun way to keep him busy.
This weekend he and some others will be framing and insulating our sunroom that catches far too much sun. Should make it much more pleasant in here and bearable for when he comes home after transplant and is couch ridden. I have my doubts on his level of energy for this task, but I'm reassured with the amount of help he'll have. I think this will definitely make him feel useful and good. It's hard when he feels like he "isn't doing anything" and says he feels he hasn't accomplished anything in the last two years. It's wildly untrue and last time I checked, beating leukemia is one of the biggest accomplishments I've ever heard of.
Anyway, this was just some ramblings of some things we do around here to grasp at the olden days of normality, which seemingly is living with no worries. I hope others have found some ways to do this also.
Now we are constantly worried, no matter how good our patient is feeling: "Did they take their pills this morning?" "Did they bring enough nausea medicine for this trip? What if we end up staying the night?" "Will they be okay by themselves while I'm at work?" "Oh God they're not answering their phone, did something happen or are they just taking a nap?!" We must now plan our days based on how the patient feels every morning, check their meds to make sure they've got enough, make sure they're set up for their day depending on how they feel (do they need meals made before we leave or do they feel able to serve themselves), do we need a back up caregiver for the day, know that we're in a place they can get a hold of us if needed, etc.
Amidst all of this, we try desperately to grasp at the straws left in our memories of what normal felt like. We go back to work, we leave tasks for our significant others, we plan things for our time together (that doesn't involve crowds or dodgy food), we try our best to make ourselves and our significant other feel like they aren't cancer patients. This becomes especially hard around times of important tests/results.
Tom has a bone marrow biopsy this coming Friday which will let us know if he's attained remission again and if he can go forward with the planned second stem cell transplant. I'm very torn on the results day. I've planned a getaway trip to get him (and myself) relaxed going into this transplant. The day we leave for it may likely be the day he gets his results. On the one hand, I don't want him worrying all weekend about his results, it would be wonderful if we got great news before leaving. On the other hand, if (God forbid) it wasn't good news it may just ruin the trip all together.
In the meantime, I've been giving Tom "homework assignments" as he is at home while he's recovering from chemo and getting ready for transplant. Homework assignment number one is that he (the car enthusiast) narrow down which car we will be getting next as our lease is up in a few months. This has kept him busy with research and on the weekend we went and did some test drives. This was a fun assignment. When he's finished with this one, the next assignment is for him to make a list of things to do in the next five years, be it school, travel, etc. It's been a positive and fun way to keep him busy.
This weekend he and some others will be framing and insulating our sunroom that catches far too much sun. Should make it much more pleasant in here and bearable for when he comes home after transplant and is couch ridden. I have my doubts on his level of energy for this task, but I'm reassured with the amount of help he'll have. I think this will definitely make him feel useful and good. It's hard when he feels like he "isn't doing anything" and says he feels he hasn't accomplished anything in the last two years. It's wildly untrue and last time I checked, beating leukemia is one of the biggest accomplishments I've ever heard of.
Anyway, this was just some ramblings of some things we do around here to grasp at the olden days of normality, which seemingly is living with no worries. I hope others have found some ways to do this also.
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