Day +16

When people initially told me to be prepared for the pot holes ahead, I held fast to my positivity, and wrote them off as naysayers. Everything had gone so well for me so far, that I just had an immense amount of belief it would continue that way. It’s not that things are going badly now, but I’m definitely struggling.

I was supposed to be released yesterday, but some of my levels were still not quite right and my doctor was worried that my counts had recovered faster than the rest of my body, so out of an abundance of caution they moved my release date to Monday. This immediately created a spiral of depression that felt like it was going to swallow me whole. Being in the hospital when you are sick and completely out of it is an entirely different thing, than when you are with it, and want to get back to your life. This room feels like a damn prison sometimes.

The truth is I can barely remember anything between Day -2 and Day +10. It’s like it never even happened. My family told me it was a pretty crazy time, and I definitely wasn’t with it between the chemo, the engraftment delirium and all the drugs, so it’s no surprise that I’m missing that time, but it’s unsettling none-the-less. It didn’t bother me being in the hospital then, because I was mostly sleeping and unaware. Now I’m aware that I’m here, almost always alone, bored out of my freaking mind, and it has become this oppressive feeling of isolation and disconnection that makes me feel a type of lonely I can’t even describe.

Instead of releasing me, they gave me the option to leave on a two night pass for Friday and Saturday night, which I happily snapped up because it’s definitely better than staying here, even if I had to be back on Sunday at 7am.

Bill picked me up and I had a real shower at the condo, got to wear real clothes and put my wig on so I could feel a bit more like myself, and we decided to go and visit my parents and sister who I hadn’t seen in a while (my mom recently had surgery and was unable to visit me, and my sister has two small kids that make it hard for her to visit and was an added infection risk to me in my immune suppressed state when I was recovering.) It was lovely to see them both, and I even got to eat my first meal out of the hospital which obviously had to come from Avanti, where I worked before I had to take leave to deal with this cancer business. It was the best meal I have ever eaten in my life. It felt like such a good day. It felt like the clouds were starting to clear, and I could see the light at the end of the tunnel. I know this sounds dramatic, Monday isn’t that far away, but when you’ve been in the hospital this long, it sure freaking feels like it.

Since we were back in Courtice we decided to stop by the house to visit my kitties which I’ve been missing a lot. We had planned to come back to Toronto but I was so tired by 7PM all I wanted to do was go to bed, so we decided to stay in Courtice for the night, but at 10PM when I suddenly had a low grade fever we panicked and headed back to Toronto. We decided to take my thermometer to the hospital and have them check my temperature there, to see if it was accurate and see what to do about the fever. When they checked my temperature orally at the hospital I did not in fact have a fever, since apparently ear temperature is hotter than mouth temperature (which no one freaking told us, they just told us that any fever of 100.4 is a medical emergency) so I was hoping they would simply let me go back to the condo and get a good night’s sleep… but thats when shit went south.

Out of an ‘abundance of caution’ they decided to run 18 million freaking blood tests for every virus known to man, and put me in immediate isolation and now I am stuck here for the remainder of the weekend. They woke me up every single hour all night to check my vitals, so I am now the most exhausted I have ever felt (which I’m sure is great for my over all recovery) and so far every single test has come back negative but I’m still in freaking isolation. I’m honestly so frustrated and just over this place and I know that sounds terrible but I just wanted so much to get back to my normal life. At the same time it’s like, they gave me the chance to do that, and I freaking lasted not even 12 hours before I ended up back here so I feel kind of like a total failure at my first attempt at life outside of the hospital.

The truth is the last couple days have been really hard. People warned me that the emotional toll of a transplant was as significant as the physical and I really didn’t understand what they were talking about until recently. I have an immense amount of feelings that are confusing and don’t really make sense, that I don’t even know what to do with. I feel so grateful to be alive, to have survived this first round of the fight for my life. At the same time I am terrified for all of what is to come. I am terrified of relapse, of GVHD, of complications from the chemo, of losing sight of who I was and am. I feel like my identity is conflicted and lost and I feel the most disconnected from the real world and the people I love the most, more than I have ever felt in my whole life.

I get irritated to the point of rage when people around me complain about ‘first world problems’ now. I wasn’t expecting that. It’s not that I feel people don’t have a right to complain… I can’t really explain it. It just really gets to me. I’m trying so hard to stay positive over here and see the bright side of this extremely hard experience and It’s harder than I ever imagined it would be. I thought I could meditate my way through all of these complicated feelings but I guess it just doesn’t really work that way. I actually have to face some of them head on and that’s scary and really fucking uncomfortable.

I really wasn’t prepared for this whirlwind of feelings I have now, and I almost feel guilty for having them because everyone thinks I’m so positive and strong, but some days I really just don’t feel that way at all. I feel like a hollow shell of myself. I tried to distract myself throughout this process with all the things that I wanted to accomplish in my second life, but there are times I realize I am distracting myself from the matter at hand, from the feelings that bubble up inside of me and I can’t push back down.

That’s where I am at today. Not positive. Not strong. Hollow. Tomorrow will be a new day.