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Dose 4: when you think you know what to expect

July 3, 2018

I started writing this yesterday after a fairly unpleasant weekend. It’s hard to write because it feels so whiney, but I have to remember that there’s a difference between sharing negative news and just being a complainer.

I had my fourth dose last Monday. Tuesday and Wednesday I felt normal and didn’t want or need a nap. This is a good thing because on Wednesday, Jonathan got a stomach bug and was out of commission throughout the afternoon and evening, and then spent Thursday recovering. By Thursday evening, it was the blind leading the blind – me griping at him to get up and help with bedtime because we’re ALL tired around here.

On Friday, I was tired enough to take a 3 hour nap, and did the same again Saturday morning. I was also feeling bad, but in a nondescript sort of way. I felt lightheaded and woozy a lot. Uncomfortable in my own skin. My mouth felt papery. I had to change my pajama pants one day because they had been washed somewhere else and the smell of the detergent was overwhelming me. When I slept, I had dreams that left me feeling disoriented. I was having a hard time going to back to sleep if I got woken up during the night or early in the morning.

On top of all of that, I started what I guess would be considered my period. Some people go into temporary menopause while going through chemo. Not me. I seem to have the period that just won’t quit. In spite of exclusively breastfeeding, I always got it back quickly after giving birth. And now, in spite of being on tamoxifen and having chemo, I’ve had it twice. Granted, the frequency and duration have changed (I can tell you all about it if you’re really interested). I’m not saying I want to go into menopause, but the alternative of now having a completely unknown and unpredictable hormonal cycle is really unpleasant.

We were also really struggling with the girls. While we never regret having three children, we do have to pretty regularly remember that we didn’t do ourselves any favors by having them so close together (3 in 39 months.) We’ve never had the luxury of dealing with one person in their terrible twos/threes/fours. It seems like it’s always multiples in multiple hard stages all at the same time. We have one child who never stops talking and making noise. Another child who is exercising her right to defy. And another who is a combination. They aren’t bad. It’s just a lot. It’s a lot of noise. A lot of people who want and need to be heard.

I also struggle with some a lot of mom guilt here. I always wanted to be a mom who loved having her kids home during the summer. I didn’t want to be counting down the days til I could send them off the school. But, in spite of them being in summer camp three days a week, these last few days were bad. Not sustainable. Throwing kids in bed at 6pm just because no one can stand to be around each other anymore is not a blessing. (By the way, they wake up at 11pm when you do that. That’s not a blessing either.) I know I need to give myself grace for what we are going through, but we had a couple ugly days in our house.

Also, on Friday I went online and saw the results of my tumor marker that had been taken last Monday. I went from 28.8 on March 5 to 33.7. I couldn’t imagine how an increase was possible since I had had my mastectomy during that time. I told myself to wait until I could talk to Dr. Z to think about it, but it still sat in the back of mind like a dark, heavy stone.

To spare you the agony of waiting that I went through, on Monday, I finally googled tumor markers during chemo, and sure enough, most people’s go up during chemo. I also texted my nurse, Karen, who said the same thing “they go up before they go down.” So that is now a relief, but I didn’t know that all weekend as I sat with that news.

On Sunday, I went to church and was a hot mess. Our pastors asked how I was before the service and I started crying – “Obviously, I’m great!” I was tired and discouraged and depleted. And I felt lousy. We had some good conversations, got prayed for, and I went home to take a nap. I lounged around the rest of the day, then I woke up late that night feeling nauseated, and ended up throwing up. I was kind of happy to know that there was something else going on since this was so out of the norm for post-chemo. I still felt bad yesterday, though not nauseated. Today I feel a little better still.

The whole feeling bad thing is weird. I want to separate what is caused by chemo and what isn’t, but truly, everything is chemo related right now. Normally if I got a stomach bug like Jonathan had, it would last me a day too, but since my immune system is already low, it’s taking me days and days to get over it. It’s making it hard for me to think ahead to my next treatment because I still feel bad. It makes me concerned about the rest of the summer because I have no idea how I’ll feel.

I was just watching some videos by Dee Doherty. She’s a video blogger who tells her breast cancer story on YouTube. (She’s entertaining and interesting.) She went through the same AC-T that I’m going through, and she and her husband both agreed that it’s impossible to make a plan because every treatment goes differently. And that is hard for me too. I like to know what’s coming. I think because of how well I did with dose 3, I didn’t plan for much help last week, but then Jonathan and I ended up taking turns single parenting.

A couple positive things I want to remember from this hard stretch: On Sunday a friend reminded me that when I have these days where I do nothing but lie around, I’m still doing something. My body is always working to kill this cancer. Just like when you’re growing a baby and you’re tired all the time. You can’t see what’s going on, but it’s important work. Also, I got an email from a lady yesterday telling me “This time will not be wasted… The moments you might feel have been lost due to your current battle, God redeems.” That was encouraging on its own, but it also reminded of a friend who told me that just as God prepared us for this, He has also prepared our kids for it. They aren’t an afterthought and He will meet their needs when we aren’t able. Oh yeah, I can’t forget this – this morning I was sitting on the floor and Elin put her hands on my cheeks and said “Mommy, you’re so beautiful.”

So now I’m getting my self-care and asking-for-help pants back on, drinking tons of water and sleeping when I feel like it. We’ve also had some good conversations about the girls and ways we can make our days better. So far so good. I pray that this week continues to improve and that I have some normal days before next week.

2 Comments leave one →
  1. Ruth Petersen permalink
    July 4, 2018 09:03

    Grace after I read this post, I literally dropped my head on my desk and cried and prayed for you and Jonathan…I know that only by God’s Grace and His help do and will you get through this journey…I wish I was closer, I would come get the girls…and SO enjoy being with them..If you ever have a desire to see Branson, MO I’m only an hour away and I’m a great baby sitter…leave me the girls to keep busy and you and Jonathan head out…I’m serious, anytime. Please, Please know I pray for y’all every day..Much love, and huge (((HUGS)))… Ruth xoxo

  2. Syra permalink
    July 4, 2018 13:03

    Grace! You are so brave! And the whole summer camp thing – I feel like that and I don’t have any of the stuff going on you do. I thought having them home would be a blessing but at a certain age they need constant attention and exercise and stimulation that I am unable to provide 8 hours a day and still feel sane. Bless you during this time and I hope next week is better :).

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