Zip-lining Across Niagara Falls, Day -4

I haven't had the chance to sit down and write up a post in the last few days. Mom has started chemo and I've been busy helping her out.

She started cyclophosphamide three days ago (chemo). Today is her fourth day. She has been handling it very well, up until today. Today she experienced a fair amount of vomiting and hot flashes, and a loss of appetite. Today was the last day of chemo, the next three days she will receive antithymocyte globulin. The staff administers anti-emetics to prevent nausea and vomiting, although today she didn't hold up well.

Yesterday we were shifted from the 6th floor to the 5th floor, into the new BMT (bone-marrow transplant) ward. It has been built to assist bone marrow transplant patients and is very new. I didn't believe we were actually moving at first, as we've been told a few times before we were going to be moved but it didn't pan out. We were told about the new ward awhile before coming here.

The new rooms are very similar to the one we had on the 6th floor. You can tell they are brand new as there are some paint marks on the furniture and some little touch ups here and there. There are a separate set of doors you walk through when on the 6th floor to get into the ward. The room we were given was a fairly large room, a bit bigger than the last one we had. Everything seemed to be going well other than having issues acquiring an IV pole for Mom to maintain mobility, up until bed time. Mom was worn right out from the chemo and was woken up at 5 AM yesterday morning, so she really wanted to get to bed. I got her all set up and turned off the lights, only to notice that it sounded like a theme park outside our door. The room wasn't set up very well in terms of keeping sound out, also keeping in mind that our door is directly in front of the nursing station's desk. Asking to keep quiet wasn't exactly an option - they tried their best, but I understand that nurses need to talk to one another, it's part of their job. An hour later a cleaner came into our room and flipped every single light on, and began cleaning. Mom was livid. Understandably so, since she was so tired out. 

I spoke to Dr. Kharya and his team today about the noise and explained that the room would not work out, and thankfully we were able to be switched to a room at the end of the hall, away from the nursing station. It's odd to me that the noise is such an issue on this floor, as our room was right outside the nursing station on the sixth floor as well, but it was never a problem. The room we moved into is about 1/3rd the size of the one we had before, so I had to sacrifice my working desk for homework. The bathroom is the same size and the room has almost exactly the same furniture in it. That is quite alright with me though, what matters is Mom's treatment and ability to get a good rest. It's more cozy this way, anyway!

So it is apparent that there are some things to be fixed on this new floor, but that is to be expected as we are the first patients to be here. The new bathrooms have better hand rails for people who need them. The new flooring doesn't like to cooperate with the IV pole wheels though. We made an attempt at using different IV poles but none of them seem to roll smoothly across the laminate yet.

A few nights ago Mom and I were sitting down watching a movie when she turned to me and randomly said, "when I get better, I want to go zip-lining at Niagara Falls." It caught me off guard as it was such a random thing to say. I asked her "where did that come from?", and she said "because I'm excited to live and be able to do things again". I teared up a bit but didn't show her. For the last few years I've asked my Mom to do different things with me, but she wasn't able to. From my high school graduation to the night of my prom, she wasn't able to participate in normal activities, and to many this was confusing. Her disease has been mostly cognitive decline, so although she is mostly physically able, she has great difficulty processing things and carrying on regular social interaction. She had to sit at the back of the room for my graduation because being in large crowds made her extremely anxious, and she was careful who she spoke to, because all too often she could not keep up with the pace of regular conversation. She would leave events early due to fatigue, and she would have to cancel on plans because she didn't feel like she could mentally process the thinking required for an activity. Knowing that my Mom is looking forward to trying things again brings me hope. Some days it feels like my Mom has gone missing, because the woman I'm speaking to can't understand what I'm saying and her brain can't form the words she wants to speak. 

For now it's some more rest and antiemetics for Mom.