I haven’t had a lot to say lately. I’ve been thinking about everything a lot and trying to decide how I feel. Usually I know how I feel. I don’t have to consciously think about having feelings. This is uncharted territory. Am I depressed? Am I just processing? Am I still in denial? I guess it remains to be seen. Eventually I will look back and be able to know how I was feeling.
I know part of it is the chemo. When I signed up for the trial, I knew I would be getting weekly treatments. I know that this method is being used on my type of tumor for the trial because this tumor grows super fast and doesn’t respond to any hormone therapy. By constantly giving it a barrage of chemo, it kills the tumor – in a lot of cases it is completely gone, literally melted away, before surgery. That is great. I knew the side effects would be better to start with but will be cumulative so by the end it will be harder than a standard chemo schedule. But really, I believe this is the best option which I why I signed on to do the trial. What I didn’t think about was how getting chemo every week would actually be. How many days I would be down and how much help that would require. How quickly a week passes. How much I would dread Thursday afternoons. Basically what the reality would be. I think that’s been the hardest thing to deal with. The side effects from week 2 really knocked me on my ass. It threw me for a huge emotional loop and I think I’ve still been trying to process things.
But I am happy to report that week #3 was better. We we much more prepared which I think really made the difference. I stayed in bed or on the couch for the entire 36 hours, moving just as far as the shower. The weekend was better and I was able to nap. Saturday we went to Boulder for about an hour and a half and when we got home, I laid down for a nap at about 2:30 or so and didn’t wake up until 6:30. I get tired really easily to say the least.
I was talking to one of my friends this week about how things were going so fast that it was overwhelming for me. She said that it must be good that it’s going so fast and I’ve thought about that a lot. Because it is good. I’ve been getting so tied up in feeling overwhelmed and I think I need to appreciate that it’s going fast. Overall it’s going well too. They told me to expect it to be “relatively” easy to start with and I think it is. Yes, I’ve had a lot of side effects but I still have my hair, I’ve yet to puke my guts out, and I can still function. Those are good things. My treatment today was #4 of 16 so that puts me at 1/4 of the way done. The second round will be spaced out a little more so it will be 21 weeks total, but 16 treatments so I’m trying to turn my thinking around to focus on the good. Trying.
I don’t think I have had any new side effects that I haven’t blogged about, but I can tell my hair is coming out a little more each day. I try not to mess with it too much, but it itches all the way down in the hair follicles so in the evenings I have gotten in the habit of pulling it. That’s really the only thing I can do to relieve the itching and it’s going to come out anyway so I don’t feel like I’m doing any harm. I don’t physically pull the hair out, but just grab a little between my fingers and pull gently. Last week I would get 1-3 hairs pulling out in my fingers each time. Not much, but more than a hair brush would remove. Tonight I was up to 14 at a time. Not on every pull, some only had 4-6, but most were double digits if I took the time to count. So, I guess it is “thinning” which is good. And I’m on week 4 and still have hair which most Taxol patients don’t get. When it gets thin enough to not look right I will buzz it off. I think people look more sick with the thin hair than if it was just gone. Right now at least I’m not stressed about buzzing it. I already cut it all off so what’s a little more? I do like the pixie cut, I could see getting used to it. Good thing I like it since I’m going to have to have short hair at least while I grow it back in next year.
My blood counts were better this week than last which is great. My red blood cells were barely under normal so they wouldn’t even call me anemic at this point. I met with the oncologist while I was in today, she does an exam every 3 weeks. The exam went well and everything is as expected which is good. She thinks the tumor may be a little smaller, but I have some serious fibrous tissue in there from all the biopsies and it is still super sore so she can’t really get in there too well. I still have yellow skin from all the bruises healing. She said it can take 2 months for that to go away.
I’ve had several people ask me about iron supplements for the anemia. I did some googling on that and talked to the doctor today. Iron deficiency is the main cause of anemia in the general population, but my iron levels are actually good. The chemo doesn’t hurt that. My red blood cells are low because of the meds which we know is going to happen. All of my rapidly dividing cells are being killed and my cell counts go down because the bone marrow which produces blood cells is affected by the meds. The way the doctor explained it, I can have a ton of iron floating around in my blood, but without the cells it makes no difference. So no iron supplements for chemo patients unless the iron actually goes down. Also, no anti-oxidents. Since they help cells repair, they can actually help the tumor which we don’t want. She told me she would rather me eat lots of fruits and veggies and a well balanced diet than taking a multi-vitamin too. So I am trying to focus on good, real, actual food rather than popping pills to try and get nutrition.
My appetite has been improving, which they think is from the steroids. Food has very little taste to me and I find myself craving strong flavors so I can taste something. Apparently some patients lose the sense of taste rather than getting the metallic taste all the time. They think that it’s easier to deal with so I guess I should be happy about it. I don’t know if it’s going to last so we’ll just see what happens.
The actual procedure of accessing the port was a little better today. I have had a different nurse for each treatment and I think todays was my favorite. She used the numbing spray, but I could feel that she put the needle in slower than anyone else has. Whatever she did, it was comfortable right away. A lot of times it burns for an hour or so after it goes in. Not a lot, but enough to be pretty aware that it’s in there. The blood didn’t come back when she tried to get it so she had me lay all the way back in the recliner and breathe deeply and then it came pretty quickly. Neat trick. I’m not sure if I wrote about that, but I find it so odd. When they take blood from a needle in your arm, you pump your fist to make the blood flow faster. Well, when they take blood from a port, you breathe deeply to pump it. Isn’t that crazy? Since I was laid back and breathing so deep today, I got really light headed from it. Our bodies are amazing. They gave me the steroid as pills for the first time, but otherwise everything was the normal dosing. I was happy to have the Benadryl in the IV again rather than the push like I had last week. I got a semi-private room again which was nice and brought lavender that I received as a gift to use as aromatherapy which did help to keep me calm and the nurses loved to come into my space and smell it too. I got tons of comments on my quilt today which reminds me that I still haven’t posted a full picture of it. So bad, I must get that done.
I’m sure my blog is not super exciting to read right now. I feel pretty much numb about everything so I think my sense of humor is lacking. Hopefully it will come back soon, I think I am much better as a smart ass.