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.
Friday, August 1, 2014
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.
Friday, April 25, 2014
Guilty Blogging
Blogging... well I started an email list for those wanting to be in touch with Tom's journey through all of this and it turned out I wasn't tech savvy enough to juggle that and would forget people or type things in incorrectly, whatever. So then I began the Leukemia Log which was to make it an easy location for anyone to jump on and catch up. It had occurred to me that I enjoy writing and it can be a good outlet for me so why not have a separate, non-publicly-announced blog for myself.
The thought seemed simple and rather ingenious on my part, finding a healthy outlet of my feelings without burdening close ones with them. Turns out, that because I've shared this location of few and far between ramblings, that I still feel a sense of guilt tied to writing out my feelings even here.
Anyway, it's silly, but that's probably why I haven't utilized this blog as much as I'd once intended.
In any case, should there be anyone following this or reading it, it's been a hell of a road. I don't even know when I last created an entry here so without going to look, I'll provide a quick synopsis:
-March 22, 2013 Tom had his stem cell transplant
-September 2013 Tom was told at his 6 month check-in that he'd relapsed.
-He's done some more chemo and some DLI's to create some graft vs. host to combat the leukemia, but the GVHD factor never happened, though he did attain remission again in December.
-Beginning of this month, April, we found out as projected by the oncologist due to Tom not getting any kind of GVHD, Tom has relapsed again.
Going back to this last appointment, even though the doc had told us that it was likely this would be the case... we were really feeling positive! He was feeling so good and his counts were looking really good too! The doc said that based on Tom's counts that even he was beginning to hope for the best! We just bought our first home in March and we are so excited about that and we were poised for him to be cleared and released back to work. I think this felt more of a blow to the ego and hopes than the first original diagnosis.
The first moment we got the for sure news that Tom had leukemia, my heart fell through the floor and maybe even through the center of the Earth it felt so heavy. I felt like it was the end of the world and I could have cried for a year straight if someone had let me. However, there wasn't time for that and it wouldn't have helped anyone so I soldiered up and told him it was going to be okay and he was strong enough to beat this. We took one day at a time and for the first week it felt like each time we saw the doc there was more bad news, but we got through it and Tom did an amazing job at just making this his journey and not focusing on numbers or whatever. We were new and determined.
This time it felt like the worst kind of defeat. I immediately fell apart, my poor brother in law was in the room and handed me some tissues. There was so much sadness, disappointment, heartbreak, and fear filling that room. Tom kept it together and asked the doc what was next, what he was looking at, what his choices were. I want so badly for him to be healthy and beat this so he can go on with living a normal 27 year old's life. I want so badly for us to enjoy our home, both be working again, maybe even have children. I want my husband to be able to live life without the fear that there isn't much left in it for him or that he will spend it all in the hospital, I want him to be able to envision himself as 80 years old with a lifetime full of wonderful memories. I want to be able to promise him all of this will happen but I can't and I hate that feeling. I hate that feeling. The feeling of sitting next to someone scared out of their mind and having to pretend you're not afraid too, the feeling of having zero answers in a situation where rationale doesn't exist. The feeling that a hospital feels more familiar than your own home and the word "future" sounds like something only read about in a fiction novel. I hate it.
I also hate that it's understood that I would be stressed and upset but somehow it's almost unacceptable. Now ponder that sentence, because that really is the reality of the situation for caregivers. Everyone says, "You need respite too" and "Make sure to take care of yourself too." But let's really play it out. What might this look like? A night sleeping at home? Well that's going to be filled with worry and no sleep because you get the overwhelming guilt that the one night something will go wrong, will be the night you're not there. A day away with some gal pals? Until you're being asked how long you expect to be, when you'll be back, or you're worrying again the whole time and filled with guilt... guilt that you should be there, how dare you be out having tea and reading a book! Your husband is in the hospital for God's sake! That may not be dialogue from others, but it's certainly what goes through your head. So you rush. You rush from here to there. You try to fit important calls or paperwork in somewhere along the way, don't take too long at the store, spend every night in the hospital losing hours of sleep so that you miss your exit when driving for work the next day. The idea of what others might think if you take a day or a night or even an hour... it makes it more relaxing and easing of the mind to not even bother with moments of respite, then a moment of respite would ever give.
And who do you share this with? You can't share this with the patient, though I have because I get fed up with the comments about me "taking my time" when if I were to have five minutes to myself, I think I'd deserve them! But really that's not appropriate unless handled delicately so as not to minimize the patient's situation... though delicate probably isn't how I'd describe my outbursts. My apologies, perhaps. Because just as we don't want to minimize the role of the patient and their struggles, we as caregivers don't want to feel our role and struggles are minimized either. The patient just needs to worry about themselves and they should only have to worry about themselves. A caregiver has to worry about the patient above all others, as well as carry on with themselves and sort things out for the both of them and juggle visitors and normal daily things such as work, errands, chores, etc., all while carrying on like a normal walk in the park... which may be what leads some to think that's what it is. It isn't. The story so often told is of the battle of the patients, but there's another battle being fought too and it's fought by the caregiver. The caregiver has to be a master of being in five places at once to get things done all while being the patient's largest advocate. To answer the question being asked at the beginning of this lengthy paragraph, I've found that one must be particularly choosy and that it may not be a good idea to put it on someone involved or invested in the situation... the best person in my experience, is another caregiver. Someone who can really hear you out and then just support you with their understanding.
So to all of those caregivers out there, cheers. Your role is daunting one, but no one cares for our patients like we do and there's a reason we've been put into the position. Not just anyone could play this part.
The End.
The thought seemed simple and rather ingenious on my part, finding a healthy outlet of my feelings without burdening close ones with them. Turns out, that because I've shared this location of few and far between ramblings, that I still feel a sense of guilt tied to writing out my feelings even here.
Anyway, it's silly, but that's probably why I haven't utilized this blog as much as I'd once intended.
In any case, should there be anyone following this or reading it, it's been a hell of a road. I don't even know when I last created an entry here so without going to look, I'll provide a quick synopsis:
-March 22, 2013 Tom had his stem cell transplant
-September 2013 Tom was told at his 6 month check-in that he'd relapsed.
-He's done some more chemo and some DLI's to create some graft vs. host to combat the leukemia, but the GVHD factor never happened, though he did attain remission again in December.
-Beginning of this month, April, we found out as projected by the oncologist due to Tom not getting any kind of GVHD, Tom has relapsed again.
Going back to this last appointment, even though the doc had told us that it was likely this would be the case... we were really feeling positive! He was feeling so good and his counts were looking really good too! The doc said that based on Tom's counts that even he was beginning to hope for the best! We just bought our first home in March and we are so excited about that and we were poised for him to be cleared and released back to work. I think this felt more of a blow to the ego and hopes than the first original diagnosis.
The first moment we got the for sure news that Tom had leukemia, my heart fell through the floor and maybe even through the center of the Earth it felt so heavy. I felt like it was the end of the world and I could have cried for a year straight if someone had let me. However, there wasn't time for that and it wouldn't have helped anyone so I soldiered up and told him it was going to be okay and he was strong enough to beat this. We took one day at a time and for the first week it felt like each time we saw the doc there was more bad news, but we got through it and Tom did an amazing job at just making this his journey and not focusing on numbers or whatever. We were new and determined.
This time it felt like the worst kind of defeat. I immediately fell apart, my poor brother in law was in the room and handed me some tissues. There was so much sadness, disappointment, heartbreak, and fear filling that room. Tom kept it together and asked the doc what was next, what he was looking at, what his choices were. I want so badly for him to be healthy and beat this so he can go on with living a normal 27 year old's life. I want so badly for us to enjoy our home, both be working again, maybe even have children. I want my husband to be able to live life without the fear that there isn't much left in it for him or that he will spend it all in the hospital, I want him to be able to envision himself as 80 years old with a lifetime full of wonderful memories. I want to be able to promise him all of this will happen but I can't and I hate that feeling. I hate that feeling. The feeling of sitting next to someone scared out of their mind and having to pretend you're not afraid too, the feeling of having zero answers in a situation where rationale doesn't exist. The feeling that a hospital feels more familiar than your own home and the word "future" sounds like something only read about in a fiction novel. I hate it.
I also hate that it's understood that I would be stressed and upset but somehow it's almost unacceptable. Now ponder that sentence, because that really is the reality of the situation for caregivers. Everyone says, "You need respite too" and "Make sure to take care of yourself too." But let's really play it out. What might this look like? A night sleeping at home? Well that's going to be filled with worry and no sleep because you get the overwhelming guilt that the one night something will go wrong, will be the night you're not there. A day away with some gal pals? Until you're being asked how long you expect to be, when you'll be back, or you're worrying again the whole time and filled with guilt... guilt that you should be there, how dare you be out having tea and reading a book! Your husband is in the hospital for God's sake! That may not be dialogue from others, but it's certainly what goes through your head. So you rush. You rush from here to there. You try to fit important calls or paperwork in somewhere along the way, don't take too long at the store, spend every night in the hospital losing hours of sleep so that you miss your exit when driving for work the next day. The idea of what others might think if you take a day or a night or even an hour... it makes it more relaxing and easing of the mind to not even bother with moments of respite, then a moment of respite would ever give.
And who do you share this with? You can't share this with the patient, though I have because I get fed up with the comments about me "taking my time" when if I were to have five minutes to myself, I think I'd deserve them! But really that's not appropriate unless handled delicately so as not to minimize the patient's situation... though delicate probably isn't how I'd describe my outbursts. My apologies, perhaps. Because just as we don't want to minimize the role of the patient and their struggles, we as caregivers don't want to feel our role and struggles are minimized either. The patient just needs to worry about themselves and they should only have to worry about themselves. A caregiver has to worry about the patient above all others, as well as carry on with themselves and sort things out for the both of them and juggle visitors and normal daily things such as work, errands, chores, etc., all while carrying on like a normal walk in the park... which may be what leads some to think that's what it is. It isn't. The story so often told is of the battle of the patients, but there's another battle being fought too and it's fought by the caregiver. The caregiver has to be a master of being in five places at once to get things done all while being the patient's largest advocate. To answer the question being asked at the beginning of this lengthy paragraph, I've found that one must be particularly choosy and that it may not be a good idea to put it on someone involved or invested in the situation... the best person in my experience, is another caregiver. Someone who can really hear you out and then just support you with their understanding.
So to all of those caregivers out there, cheers. Your role is daunting one, but no one cares for our patients like we do and there's a reason we've been put into the position. Not just anyone could play this part.
The End.
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