It 1:30 in morning and I’m sitting in my daughter’s room . Since the power loss she no longer sleeps through the night. It is making us all tired and cranky.
To be honest I think we’ve all been tired lately, we haven’t adjusted well to the changes in routine. I feel like I’m behind in everything and can’t give my kids my full attention. I feel frustrated that everyone else talks about how tired their kids are after school – mine comes home running and screaming through the house, and he also has to be the loudest ALL THE TIME. It’s like they let him nap all day, give him some caffeine and send him home :-). But we know he’s tired because he whines about absolutely everything and usually goes to bed without much fighting. We can’t put them to bed much sooner, I don’t want to put them down immediately after dinner. Hopefully, soon we will all achieve some balance.
I live in Ottawa and on Friday our area was hit with a series of tornadoes. It’s amazing when you look at the damage that more people weren’t hurt. We were fortunate – our house seems to have suffered no damage but we did lose quite a bit of food as we were without power for 50 hours. Unfortunately, E had diarrhea Saturday night, it’s very hard to bathe an almost 2 year old when you’re not sure how long the hot water will last! She seemed happy enough in the sink, but it was nice to get to K parents and be able to have showers / baths.
So I now have my new boobs! I’m not sure what to think of them yet – so far they are uncomfortable and the stitches are annoyingly itchy and achy. I can’t believe this is finally over – although I know it will never really be over the big, important steps are done. Now I heal and we move on from this part of our lives. It’s hard to believe that it’s been just over a year since that fateful ultrasound. The one where the tech announced that I shouldn’t worry as they had never found cancer on a screening ultrasound before – there I went beating those odds again – I wish I could win the lottery instead.
I have to admit that all this surgery and the resulting side effects – particularly the removal of my ovaries – has made me think about Ava much more recently. I think about what our life would have been like if she had survived birth – both as she was and if she had been healthy. Would she be more like M than E seems to be? Would she have blue eyes like myself and M or green eyes like my husband and E? Would our lives be put on hold to care for an infant that would likely have died shortly after birth or, in some ways even worse, would she have lived longer but been in agony? A lot of these questions make me think of a couple we met who’s daughter was born with T18, but they didn’t know until after her birth. She lived for one month and never left a hospital setting. I think that that could have easily been us – not likely given Ava’s severe and obvious birth defects, but still. We had the opportunity to say goodbye to our little girl knowing that we had done right by her and that I would not force her to suffer for selfish reasons. But I guess that brings me to my point – a diagnosis of cancer is like losing a child once the obvious signs are gone people expect you to be back to normal but for you things will never be the same, you have been forever altered by the experience.
I found this post in my drafts folder – I had completely forgotten about it. It was written in April before I started working.
The other day one of the ladies from my support group asked if I was still angry about my diagnosis, and, yes, yes I am.
I don’t think I’ll ever stop being angry and sometimes I’m not even sure what I’m angry about. But I think about all those ‘what if’s ….’ and get caught in a horrible loop. It doesn’t help that I basically sit at home alone most days. I also worry that I’ve passed this mutation to my children – my parents were 2/2 in that department and I’m terrified that it will be the same for us. And that’s another thing that bothers me – I had really hoped E would be a girl, I told people it was because I was comfortable with boys and we already had boys things, but a large part of me recognizes that this mutation although it can result in increased risk for certain cancers in men is nowhere near as problematic as it is for girls. Then I realize that I can’t imagine not having E and it makes me sad/angry that I even felt that way – that I should be ecstatic that she’s here and healthy and even if she has inherited my mutation that it won’t be a problem for years and that hopefully she will have better options than monitoring (which wouldn’t stop cancer but hopefully catch it early – and even that isn’t a guarantee) or surgery that will forever alter her body.
So it’s midnight the night before (or day of) my surgery to replace my expanders and I hope it’s the last surgery for awhile! I got good news today – my oncologist has kicked me to the curb and I hopefully will never have to see her again. I’m sure she feels the same 🙂
We told M this evening before bed that I was having surgery to get new boobs tomorrow and I might not be able to hug and play with him like normal. And unlike the previous times he was very clingy and kept getting up. I had hockey this evening so when he asked me what car I was taking I said I was taking daddy’s car – thinking he was asking about my hockey game. He informed me that I should take my car and when asked why he told me that that way I could get my new boobs faster as it was a faster car. He’s right that it is a faster car but it doesn’t work like that. He also proceeded to hug my “squishy” stomach and poke my “hard” boobs. Hopefully he and E will be ok with grandma for 2 nights – particularly as everyone (including my mom) is fighting a cold.
I finally feel like I have a few minutes to myself.
We are all still getting used to the new routine – the kids are still hard to wake up during the week but of course they get up early on the weekends. My mom took the kids overnight and it was wonderful. My husband and I wandered a few stores, bought some stuff (and some of it was actually for us!), got Swiss chalet to go and watched A WHOLE movie without interruption. E hasn’t been sleeping well this week so it was the first night all week we actually sat down together without children around.
I’m glad to be working, but it’s been hard on everyone – no meals on the table at the end of day means we haven’t been eating very healthy. We should start actually planning out the meals for the week but we never seem to get around to it.
Surgery is in just over a week to have these tissue expanders replaced with implants and I can’t wait – it will be almost one year to the day of the ultrasound that resulted in the breast cancer diagnosis. The expanders for the most part aren’t horrible, but hugging is uncomfortable and for some weird reason my armpits are sore in the mornings. And I might actually be able to see my arm pits when I shave which would be really nice.
And I actually have hair now – complete with chemo curl! I’m actually thinking of getting it cut as I now get bed head.
So I’ve finished my first week at work! I forgot how hard it is to stick to a schedule – actually it’s not really the schedule (which is best for me), but having the kids up so early. I have to be out the door by 7:15 and the kids are used to getting up around 8. So they are getting up almost 2 hours earlier and don’t want to go to bed earlier, this results in grumpy children. Hopefully we will soon fall into a good routine – we ate a lot of pizza this past week and it doesn’t help that I’m not “supposed” to be lifting. I really didn’t last long with that restriction, although I’m leaving most lifting for K I’ve been getting E out of her crib in the mornings and then holding her hands as she walks. I have my follow up appointment this week and I’m keeping my fingers crossed that she will lift that restriction (and let me have a bath). It would be easier if E would walk more, but she’s getting better every day. It is funny to watch her walk. She likes opening and closing her hands as she walks and she was refusing to walk on any floor that wasn’t carpet for a bit. We only have carpeting in the upstairs hallway and she’d go into her room and immediately freeze and start complaining!