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.
