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.
