Treatment #2 and …hair

Last week was treatment #2. For this treatment I only got 1 drug, paclitaxel. This meant that the treatment was much shorter and we were only at the infusion center for about 2.5 hours vs. the 5+ hours we were there the first week. (Although future week 1 treatments won’t be that long…)

We tried a new cold method which was ice water baths for my toes (in a dishpan like container) and fingers (in manicure trays). It was very technically effective, but for me, I struggled with how messy it was since I don’t want to be a burden on the nurses if I’m there on my own. So, we’re continuing to think of ideas on how we could do this less messily. It may just be lots of ziplocks and towels.

So, how did I feel? Well, I felt pretty darn good this weekend. Vastly different from last weekend. 1 drug is definitely easier than 3 in this case. I didn’t have to take the super nausea medication on Saturday (day 3) and on Sunday (day 4) I felt mostly normal, the other main difference on both days being that I slept a lot more. (Got up pretty late and went to sleep pretty early.) In all, I feel very fortunate to have felt so good. Today was much easier than last Monday for sure! A lot less slow motion; mostly a lack of slow motion really! (Except it still takes me a bit longer to get “up and out” in the mornings.)

We’ve been told that how you feel from chemo/immunotherapy is expected to be cumulative, so it’s a bit unclear if this will last. Will it be true that for the first week of the cycle I feel the worst and feel pretty normal pretty quickly on the 2nd & 3rd weeks? Who knows, we’ll see, but I’m grateful for this and am hopeful for a similar round this weekend. I’m excited to have the 3rd treatment this week and then be almost 1/4 done with this first 12 weeks of treatment. 1 cycle done, that would be progress!

While physically I had a fairly good weekend, emotionally it was difficult. When you start chemo one of the things that happens is that you have a meeting/appointment with a knowledgeable chemo nurse to talk about the medications you’re getting and the potential side effects.

What’s interesting is for all of the side effects what they say is, we don’t know how this will be for you, we know how to manage it mostly but we’ll have to work together to manage things. The other thing is they say, as expected, that the one side effect they pretty much can guarantee is that you’ll lose your hair and you need to have a plan for that. (They give you a catalog with options for head coverings and wigs from the American Cancer Society to help with this plan.)

This, of course, is the side effect that I (and likely many others) zeroed in on when I first found out that I was going to have chemo. (Probably not the one I should have zeroed in on… I might add…) I was not thrilled about this, but at some point, around the time I decided not to cold cap, I thought I had convinced myself that it was not a too big a deal and it would be ok. I had a plan. Since they said you start really losing your hair at about 2 weeks, somewhere between week 1 and week 2 I would cut my hair fairly short and then wait. It would be fine – no big deal, it’s just hair; it will grow back.

I had lots of fabulous suggestions from all of you about head coverings and wigs and I’d even bought a wig (it came in today, I’ll pick it up tomorrow.)

Well, Friday was the day. I made the appointment and a wonderful friend offered to come with me. I knew I would be sad. Unsurprisingly, I cried during the haircut, I was upset, I hope my friend’s hands didn’t hurt because now I realize I think I was squeezing them really hard. (I’m sorry!)

The lovely lady cut my hair, washed it, styled it and I thought…man, I look my other friend’s sister. I decided to test my new hair at an early dinner out, and soothe myself with fresh pasta (what else!) I was a little weirded out by my haircut but kept telling myself it was ok.

I was a mess Saturday. When I looked in the mirror I didn’t know who it was, it felt so different, I didn’t feel pretty. A thousand other feelings that I will not articulate for you were also running around in my head. Grief. I ran down the depth of I’ll never feel pretty again, and there it was, a miserable, awful, mental spiral. More tears. Then I analyzed it, I shouldn’t feel this way, this is ridiculous, it’s just hair it’s fine! A fair amount of moping in the corner on the couch. Not a lovely day.

Sunday was a little better. I felt good, we did chores. At some point I decided I would hide in hoodie sweatshirts and hats for awhile and that would be ok. That could make it ok. No-one had to see it except for those that had already seen it.

This morning, I got ready for work, and I packed everything up. Including the hat I planned to wear to hide my short new haircut. I washed and dried my hair and when I was done I looked in the mirror and thought “you know…maybe it’s not that bad…”

I drove to work, put the sun hat on for the walk in from my car and then put the other hat in my handbag. When I got to the floor where my office is I stopped for a minute and I almost put the other hat on, but I didn’t. I thought, it will be ok, maybe don’t wear the hat. I can always put it on later.

You know what, it was ok. While this is not my favorite look ever, it is nice that I still have hair for now and I am going to try and enjoy that while I can. (Random…it’s also weird because none of my normal big sun hats fit the same way…). Mike was the most wonderful person ever and called to check on me in the middle of the day. I am ok. It’s ok.

I really thought I was going to be the person who didn’t care and found cutting my hair off really easy; I wanted to be that person very much. I was very wrong, it was a very emotional experience. It was confronting, all the things I’ve been pretending aren’t real about this evident in one haircut and looks in the mirror. I am very sick. This is hard even on the days when I feel pretty good. In all, it’s ok that it was so emotional, and I am trying to be patient with myself and remember that my experience is going to go up and down on this road.

I wasn’t sure whether I should write about this, maybe it’s too personal, too emotional. And I decided that perhaps some day it would help someone else and I’m trying to stick with my commitment to be real and open – the more open I am the less this illness has power over me and my emotions that surround it. Thank you for making it through this really long post!

Several people have asked how they can help – we are so grateful you would offer to help us, thank you! If you’d like to learn more, please checkout our ways to help page here. We don’t really have an idea of everything that might help yet…so if you have suggestions you’ve seen work for others we’d love to hear them!

I hope you all know how much we appreciate your support with everything, be it prayers, comments, suggestions, checkins, meals, and rides…we are so grateful to have all of you walking with us – thank you!