Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Friday, May 02, 2014

Irrational fears and expectations

I went to bed at 8:30 because I just couldn't keep my eyes open any longer. Then Dean came to bed at 11:00 and that was it for sleeping for me. Not because of anything Dean did. Rarely does his movement disturb my sleep. But this time, when I woke up, I remembered I have cancer.

You see, I've been able to pretend I don't have it. Because I wasn't being treated for it, (other than surgery which was a few days of discomfort) I didn't have to deal with it. It was there, but it was in the background. I have enough other things going on in my life that I didn't need hang out "there".

Now that treatment is decided….its different. It's here. It won't be invisible anymore.

Someone asked in the comments of a previous post if I would write about what I'm afraid of so they can pray for that in particular. My fears are completely irrational.

I have to say, I'm not afraid of cancer. The cancer I have is highly curable. I'm only slightly afraid of chemo. I have some very unrealistic expectations about some of the side effects but I'm hanging onto them because if there is a benefit to chemo, they are what I want. I'll take the weight loss. HA! Watch me be one of the people who gain weight while on chemo! Having said that, its not really good to loose weight during chemo because it affects your energy level and immune system. My rational brain knows this. The other side of me doesn't care.

Also, I have really bad hair. The women in my family have this very thick, wavy hair. They all have a lot of it! Mine??? Umm no, I did not get the gene for good  hair. Mine is very thin and brittle and makes me look older. I want better hair and chemo might be my only hope. LOL But, like the weight loss, my hair will probably come back grey, curly, and thinner than it is now. I think I'm going to enjoy getting rid of my bad hair, if even for just a couple of months. I say that now because I'm safe saying it. When my hair is gone and all my ugly scalp bumps and scars are visible I will likely be singing a different tune. If you're here and have been through this yourself (not your mother, or your sister, or your friend. I'm looking for YOUR perspective of your own head, not your perspective of someone else's head.)  Were you bothered by what you discovered had been hidden under your hair?

My other fear is that I've made the wrong choice. That I have some minor infection in me that will take advantage when chemo is knocking down my immune system. My fear is that my chemo plan that is supposed to be relatively short will somehow have some unexpected side effects and kill me. Thats my fear. Its not rational. Its not a realistic fear. But that is my fear.

But you know what? God knows what my fear is. And even though I get a little worked up now and then, I pray and ask him for peace and calm. To remove whatever it is at the moment. I pray for distraction. I pray for energy.

Oh, I have another fear! I'm betting Dean worries about it too. How bitchy I will be once I have my ovaries removed? This is not even an irrational fear. It is realistic.

I'm only slightly worried about the logistics of doing this chemo thing. I have a plan in my head of how it can work with minimal disruptions to our family schedule as possible. (this is me trying to be in control.) Keeping things as normal as possible for our kids is crucial, particularly for Abel. I know we have some great friends and family who are willing to help us out and in the end it will all be sorted out.

So that's it. My fears. Irrational, yes.

I have to tell you, never in my life have I craved sunshine like I am now. It has been raining here for more than two weeks and I can feel myself sinking a bit. I just need sun. I need to sit outside in my chair soaking up the sunshine and I need to watch my kids playing in that sunshine.

I'm debating about starting a separate blog for my cancer journey. Although I wanted to keep our life all together in one place, because cancer is now part of our life at the moment, I don't want people to get tired of coming here because I'm always posting about cancer. How depressing to read about THAT every day when you're coming here to read about the kids! If the sun ever comes out we'll spend all our time outside, which means lots more pictures of the kids, which means something to write about other than cancer. If you have thoughts on this, I'd love to hear them. 


Hevel Cohen said...

I have two ugly scars from brain surgery on my head. They are hiding quite well in my hair, especially under my kipah. When I was bald, it really, really bothered me. I constantly wore something on my head for the first several months.

Maybe it's time for me to learn to make trendy head coverings for women!

Diannah said...

I'd prefer you kept all your posts here. If I don't feel like I can handle a cancer post that day, I can just skip it. Trying to keep up with multiple blogs is challenging enough. I'd really prefer not to add another to the list. But that's just me.

(Oh, and on an aside, I had my own cancer scare, and, while talking to a younger friend about possible hair loss, I promised her that if I did lose all my hair, she could paint and decorate my head however she wanted She came up with all kinds of very cool designs. We were almost disappointed when it didn't happen.)

Anonymous said...

Speaking from personal experience, losing weigh during chemo is a GOOD thing -- the amount of drugs is proportional to your size, so you get less drugs towards the end of treatment. Also, you sometimes get different hat (pre-chemo mine was straight, now it's curly!).

Regardless of what side effects you get, you'll be ALIVE for your family! Get to do lots of living!

Holly @ Everydays a Hollyday said...

If it helps at all....I had a hysterectomy at 31 and had everything removed. I didn't get bitchy. I know it effects some women differently, but there is still a chance that you will feel better than ever. I am praying for you.

Carrie said...

Please keep it simple by one blog. We want to know how you are as well as the kids!! We have prayed for you along the adoptions and now want to pray for your healing. And for your peace in knowing the sun will come out, the kids will play, and you will become stronger than you would ever believe possible! HUGS

Tigger (aka Karyn) said...

Having lost my hair twice I can say that hair is overrated. I was surprised that I actually didn't look horrible bald. My head has a few bumps and so on but overall it is better than I thought. I couldn't stand the idea of a wig. I would have been so self conscious wearing it that I just stuck with caps in summer and a large variety of beanies in winter or just exposing my baldy head. Some people found it very confronting. One lady at church was horrified that I was bald and didn't have a wig so the next week I wore a multi coloured long haired wig from the joke shop. She never said anything again. Given I am the drummer or guitarist and up the front it was kind of fun.

My first chemo put me into immediate menopause and apart from hot flushes it wasn't as bad as I expected. I think my emotional difficulties had more to do with chemo than menopause as they improved radically as soon as chemo stopped.

My first time with chemo I did 6 rounds. With my first chemo drug combo (1st 3 rounds) I lost weight because of nausea and incredible cravings for salad, particularly green stuff like baby spinach and capsicum. My second chemo drug combo(2nd 3 rounds)I had a lot of pain and needed painkillers and extra steroids to help my body cope. I craved cakes and biscuits (never had before - it was always chocolate under normal circs). It made me really angry and I put on weight and held extra fluid so I puffed up. After finishing chemo the weight and angry went away again without me doing anything different so it wasn't a long term thing.

When you are having chemo you need to eat whatever makes you feel ok. It affects how things taste quite a lot and if you get mouth ulcers it can be painful to eat. Rinsing your mouth out a couple of times a day with salty water is great to prevent ulcers and to treat them if you get them.

I can reassure you that you will be closely monitored by your chemical oncologist and the nurses to make sure that you don't die from chemo. It is not an irrational fear. You are being poisoned and it can kill you. What they make sure is that they don't give you a dose that will kill you. It is very important to keep track of side effects and talk to the nurses or your oncologist about them.

Your fear of infection is also not irrational. They do check your blood each time and won't give you chemo if your immunity levels are too low. If your neutraphils stay low (neutropenia) they will admit you into hospital and put you in isolation for your own protection. They may give you an injection a day or so after treatment to boost your immunity. It hurts - bone pain afterwards - but it helps. took mine home and gave it to myself coz the hospital is an hour's drive away.

The last thing I want to tell you is that you feel very out of control. It is one of the most horrible things about chemo. You can't control your body, your physical or emotional reactions, you are sick and can't do what you are used to doing, you have to rely on people and you have to go back for more as soon as you start feeling human.

But it is all worth it to stay alive :)

Heidi D said...

I haven't lost my hair due to chemo but I did have emergency brain surgery & there was no time for stylish removal. Due to pressure in my head I have lost about 10 days of memory. I went into hospital with very long blonde hair & the next thing I was aware of was waking to half a bald head & a large dreadlock on the other side. When I got home mum cut off the dreadlock really short. It was then half stubble, half really short. Initially I was a bit uncomfortable with the look but after a couple of days of wondering what people were thinking I just decided to concentrate on the positive outcome of my situation & not dwell on the look of my head. I really hope that you have minimal side effects from your treatment & that you are able to feel comfortable with whatever happens with your hair. I look forward to hearing you are on the other side of this difficult time & all is ok :)

Relle said...

I was the one who asked if you'd be willinig to tell us your fears so we could pray for them( i was teary when i saw you mention that someone asked, knowing it was me). I so beleive in be specific when you pray. I did that and God sent me my handsome(husband) and when i wanted kids and He used a miracle to answer that prayer. Thankyou Leah for sharing how your feeling so we can be praying. I'll be praying for peace, for health, thick curly hair, that your not bitchy haha and for Dean and the kids. We don't mind cancer posts and kid posts. We come here because we love your writing style and stories about kids and life. Hugs

Relle said...

I was the one who asked if you'd be willing to share your fears so we could pray. I got teary when i started to read your post and you said some one asked. I so believe in praying specifically. I prayed specifically and got my handsome(husband) and i was dying to have kids and God made a miracle happen to answer that prayer. i will be praying for you to have sunshine, peace, health, thick curly hair, not bitchy haha and for Dean and the kids. I come to your site because I love your writing style and stories about kids and life. If there are cancer posts and kids posts that's ok, cause that is real life at the moment. Hugs

Relle said...

Sorry Leah, i thought i had forgotten to hit publish, so re wrote it and now you'll have two.