Note to self – no more IV steroid. Tuesday night I was up until about 5am. After a whopping two hours of sleep, I spent yesterday completely awake and wired. I was able to sleep last night but still feel pretty “awake”. I have a feeling this afternoon is going to hit me like a ton of bricks. Apparently there is a difference between the IV and oral dosing. In a way, it’s been great to be able to see people and we even went out last night and I felt really good. So I am thankful for that. But I know not sleeping isn’t good, and the “awake” that I feel is clearly medically induced, not a natural feeling. I know that it will wear off soon and in a matter of hours I will be down for the count. It is crazy how fast those tables turn. It snowed last night and we are forecasted to get more today and tomorrow so it seems a fitting time for me to be snuggled up in my cocoon anyway.
During chemo on Tuesday, I spent a decent amount of time people watching from my vantage point in the corner and forgot to elaborate. As I’ve said before, I am the “kid” in the infusion center and even after nine treatments, have yet to see anyone close to my age. The closest I’ve gotten was catching a glimpse of another girl at my very first treatment but I’ve yet to spot her again. It makes me wonder if I’m just missing people or what. I know I’m not the only non-retiree receiving chemo. But I digress. This week, I was struck by the number of people without ports. I usually see someone in the center with an IV, but most of us have ports for reasons I’ve already gone over. This week there were four people around me without them. Two of them took what I consider extreme measures to get their veins accessed. This being multiple nurses working on them, wrapping their arms in warm blankets to try to get the veins better, multiple pokes, etc. As I watched these patients go through getting an IV I couldn’t help but wonder why they didn’t have ports. Not that I love having a foreign body inside me, but I certainly wouldn’t want to go through that every week. One of the patients was sitting across from me so I asked him if that was normal. He said it’s actually better than it used to be – apparently he’s been getting chemo for many years. I see him every week and I think he’s there more often than weekly from what he said. He said they generally get him with the third attempt right now but a few years ago it was six attempts average. Wow. When I was speaking to the nurse unhooking everything I asked her why some patients don’t have ports and she said it’s just their choice. I fully agree that it’s good to have a choice, but I just can’t imagine choosing that. The nurse said a lot of people are afraid of the ports. I guess I’m more afraid of the damage that the chemo can do to all the veins going in by regular IV, not to mention that it would burn my skin if the IV slipped out. But maybe if I were older I wouldn’t be as concerned about the longevity of my veins and all of that. I am concerned about nurses spending 45 minutes poking me, especially if I had to go through it every week. But maybe I’m crazy.
Another of the patients was a talker. He talked to everyone. The volunteer who helps all of us, gets us snacks, etc. stayed with him for about 30 minutes doing little more than nodding while he talked the whole time. It sounded like he was trying to decide what to do with his surgery. That can be stressful as I am learning. I’m sure I’ve spent a decent amount of time venting to friends and of course many pages here typing all my inner most thoughts.
Anyway, the point of all this isn’t to judge those people for their choices, it’s just simply made me recognize how few choices those of us on this side have. We are each on our own journey, and although we are tied together by cancer there are choices we make. This is my first experience – maybe if I had chemo for many years I would choose to get poked rather than deal with ports. I can’t imagine it, but three months ago I couldn’t imagine being here. Who knows what the future will bring and what choices I will make. I have people tell me all the time how strong I am. Am I really strong? I certainly don’t feel like I’m doing anything different than anyone else would. I guess I could curl up in a ball and ignore the rest of my life, but that’s not me – and that’s not because I’m doing anything to be strong. It’s just not the way I work. Life is still happening and now more than ever, I don’t want to miss it. How would I tell my kids I can’t participate? Fletcher knows I have days that I need to rest and my medicine makes me sick, but they are days – not all the time. He knows that I will be with him whenever I can and I feel like that’s important. Evelyn doesn’t really know what is going on at all, but I can tell she misses me which makes me sad. On the days that I feel good I try to give her extra cuddles and love and make sure she doesn’t feel that. I just do the best I can. That’s all anyone can do.