Busy and tired
Last week I was pretty exhausted with my longer infusion. But I slept a lot and was able to do things like usual at home. I am still working but finding it hard to get more than a few hours in. However, some days are better than others. My mom extended her stay and we really enjoyed spending time together. She did a lot to help clean and keep things organized in the house. It was such a great help to have the extra hands to do everyday things. I sadly didn't get many pictures of her and the kids while she was here. But the one I did get, was after I ate pazole and a lot of it ended up on my shirt.
My schedule was off a little this week and started chemo on Tuesday and infusion on Wednesday. I’m noticing changes with my hair. Not a ton of loss or anything that is unusual but some sensitivity on my scalp. My hair "hurts" more often now. It's like leaving my hair in a pony for too long. I’m thinking it will be a shock but also it has to be somewhat of a relief to not have to wash it or brush it. My hair is all over the place half the time so I feel like I will save some time and get an extra 10 minutes to sleep. When I am at work I have my fan on high because I am always hot. But I am anxiously waiting for bigger changes with it.
At the end of last week I could feel my port more than I had since I had it placed. I needed an ultrasound on my port because something was wonky with it. Not sure what I did but it was slightly swollen around my neck and throat. The ultrasound came back normal with no clotting or movement. The swelling has seemed to go down a ton as of now and it is virtually invisible.
On to week 6 of treatment
Tomorrow is a busy day with appointments. I get my week 6 MRI as well. Feels like I just had one but being on study gets me frequent passes to the machine. As you all know, it is not my favorite but since I can barely feel the tumor, I am excited to see the images. It’s crazy how much the tumor has changed and reduced in size in such a short amount of time. I could feel it and touch it and it’s almost gone. That doesn’t mean much in the sense of being done with cancer but it means progress and a good solution is in place. Mainly because I know it's there, I can feel it. But if I didn't know, it is so easy to think it is just lumpy tissue or "young" fatty breast. When you know something is off, you just know. Check your boobies everyone!
I have some other appointments that are scheduled but I have no idea what or when they are right now. I just know that Eric knows about them and they are scheduled. This is how I know I will figure it out when I get there.
Oh! This is really hard.
So the main reason I had to take time away from thinking about everything going on is because I came to the realization that this is hard. It’s one thing to have a chaotic day with 4 kids all needing different things. Eric and I running a household of 6 and figuring out how to best take care of ourselves. Like that isn’t enough, there is this cancer thing with treatment that just blows. I have kept them together in my mind because we have had help and it makes it easier to not separate them. It mentally seems more manageable when they are one in the same thing with normal life, right? But I’m realizing that they are two completely different things. I'm needing to take my time at work while doing my jobs so I don’t screw anything up. I’m needing to consider how I’m feeling when driving to and from work. When I’m home, I’m needing to save energy to be with the kids and fulfill each of their needs. I don't want to say I have Chemo Brain but I will say that I have completely lost track of what I was doing and I didn't get that, "Oh yeah, I was doing this." The memory isn't coming back. I had a minor moment while working where I was thinking, if this is what the next year is going to be like, I am going to lose my mind. It is so defeating when you lose track of what you're doing. I felt so out of control and created more stress for myself because I was trying so hard to remember what the hell I was doing. At home or the grocery store, I am reminded that if I don't have it written down, I will completely forget. This may seem normal for others but for me, I can remember stuff. I can remember names. I can stay on track, get distracted, then get back on track. This week I was on track but really slow. I was remembering the why for things that I usually wouldn't need. It was hard to imagine that this is my new reality and I feel like I am actually losing it this time.
Of course I am not alone and Eric is doing as much as possible. It’s just starting to make me feel guilty for maybe being distant with the kids by not attending their events or sleeping when they are home. This time of year is always busy, chaotic, and amazing all at the same time. We are entering the month of March. We all have birthdays and I absolutely hate that I cannot do certain things with the girls for their big milestone birthdays like I would if I didn't have cancer. Yeah we might go out to dinner. They will have cake, ice cream, a few presents (Enjoli is in trouble and she is lucky I didn't cancel her birthday...ugh) but for Enjoli turning 16 and Carli turning 13, we are somewhat limited. We have some ideas and are going to do a few things. The girls are on board with waiting to do something special like a concert or something else. It probably means more to me than it does them. I just want to avoid big crowds and being out for too long. I am generally in bed at 7:30 and wake up at 2 am just to toss and turn until 5:00 when my alarm goes off. Then I get up and go to work. My sleeping sucks but it was that way before cancer. Outside of our crazy March Madness, I’m starting to think of ways to still engage with them even though I may be exhausted or sad or whatever the hell I'm feeling. It hit me that cancer and treatment can limit me to an extent. But I need to really pace myself and be the best I can to my kids, Eric, and my friends. It’s not easy to do but I’ll get there. I definitely feel the anxiety and worry coming and going but also know that if I didn’t feel those things, something else would be wrong with me. I know it’s ok to feel these things. I’m naming them and then finding how to manage and move forward. I definitely want to take my kids on a great vacation when this is all done…then go on one without them, to just thank them for doing this journey with me. Doing hard things are doable, it’s just hard.
also, it’s ok that I cry about this from time to time. Not that anybody has told me I couldn't or shouldn't cry. I think it is my own way of coping with stress to thinking that crying or breaking down is going to be a bad thing. To be honest, I am thinking it will just take more energy and I'd rather use that to...you know...yell at a bad driver, or the mean amazon guy that told my dogs to "Shut the Fuck Up!" Seriously, you are at their house and you are mad because they are barking at you? I feel that it is easier to just be mad at the easy stuff than deal with the real stuff. It’s a lot to process. And by no means am I so brave or strong. Everyone is strong in their own way and brave to face new daily challenges that life throws at them. For me, this is harder to stay mentally on top and "acknowledge the emotion and not the behavior." Thank you Judy...You are definitely whispering in my ear through this. I am working on acknowledging how I am feeling and trying to communicate that so my family can adjust as they need to. Not to comfort me but to process it themselves. My brave is saying I need to rest when I need to. My strength is not letting the irritability control my whole mode, just a piece of it.
After writing this, I think I am stressed that I have a damn 16 year old. She is something else but crap...SHE'S 16!
Have a great week and stay healthy. Thank you for the prayers and thoughts. Keep sending it my way for me and the family. We are all going nuts. hahaha