15th Post – Maine and Back

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Last Wednesday July 24, the hospital called to tell me that I would be starting Chemo on Thursday Aug 1 instead of the following week around Aug 7, as previously planned.  I was planning to be away from Friday July 26 to July 31 for a much needed holiday in Maine.

I met my chemo oncologist a few weeks back.  He’s really nice and smart.  After meeting him and him explaining chemo to me, I felt fine and calm about doing chemo.  Of course it wasn’t something I wanted to do.  I don’t want to do any of it.  But he helped me feel fine about it.

I went on holiday to the coast of Maine.  My aunt and uncle have a cottage there and we hadn’t seen it yet even though they’ve had the cottage for a few years now.  My Dad and I drove down to Maine.  It’s a long drive.  About 12 hours, but it doesn’t feel like too long of a drive because the landscape and houses are changing the entire way there to keep things interesting.

With the roadmap just as we were heading out.  Roadtrip.

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As we were driving through a small town, we came across this sign.  They even spelled it right!  This tshirt used to look good on me.

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We drove through the White Mountains national park in New Hampshire.  It is SOOOO beautiful there.  We got to Maine and spent 3 days of eating lobster there.  I had a lobster roll which is lobster meat mixed with mayonnaise and eaten in a hot dog bun.  Another time we had lobster from a hot dog stand and picnic tables type place out at a pier on the water.  And another time we bought lobster from a lobster place down at the harbour and cooked it at home.  It all was good.

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I saw some really nice necklaces in a shop that I loved and would definitely have bought before when I had boobs.  I didn’t buy a necklace though because I’m just not sure how it looks with my lack of chest.  It just looks so different.  I thought the necklace needed to be longer, but Dad thought it looked better shorter.  But I wasn’t really sure because of the different shape underneath the necklace.  I had no idea if it looked good and I didn’t feel completely comfortable with how it looked, so I didn’t get it.  If only I had boobs.  They were really great necklaces.

I was planning on going in the water everyday for swims so that the salt water could help heal my scars, but the water was freezing.  It was cold like the water in May in the river at home.  Though I was trying the Maine water out when it was a coolish day.  On a warmer and sunny day it would probably be nice.  So instead of me bearing the cold waters, we thought to fill up a container with ocean water.  We bought a container with a lid and filled it up and brought it home.  It ended up being a gasoline container, but it’s practical because it has a lid and a handle.  No, it didn’t have gasoline in it previously.  I’m going to soak my scars in the water and keep it for as long as possible.

Here I am deciding that it is much too cold for a swim.

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Here my Dad and I are filling up the container with the water, and then him and my uncle carrying it to the car.  I’m not supposed to carry heavy things 🙂  Seriously, doctors’ (plural) orders.

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And here is lobster being cooked and me about to eat one for dinner.

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We got home late on July 30 and I really felt like I didn’t want to do chemo.  For the past 2 weeks I was feeling fine about doing chemo and I still was, but suddenly I felt like it wasn’t necessary.  I am unsure.  I want more time to think about it.  I called my nurse at the cancer centre and told her I was cancelling my chemo appointment for Aug 1.  She was surprisingly much more supportive about my decision (or hesitation, if you want to call it that).  I was expecting her to yell at me, but she did no such thing.  I explained to her that I felt fine about doing chemo but that my gut is telling me otherwise.  And so far my gut has been right about everything, and the doctors have not.

My gut knew that something was wrong last year when I found the lumps, even though I’d had a lump before.  I knew it was different.  It felt different, it acted differently.  My gut told me there was something wrong still even when I got the test results back as the lumps being non-cancerous.  My gut told me that I would be BRCA positive.  My gut told me that before surgery there was some cancer in the lymph nodes, but just a bit in the lymph nodes… even though the tests showed that the lymph nodes were clean.  My gut told me that there wasn’t any cancer left after surgery, and the tests showed that there was no cancer after surgery.

My nurse told me that she understands for sure because she always listens to her gut as well.  Though she still would like for me to come in to see my oncologist next week to discuss all this with him.  I’m going to see him Wednesday Aug 7.  In the meantime, I’ll feel out my gut.  Maybe I’m wrong, maybe I’m right.  Maybe either option is right.  Maybe either option is wrong.

I am planning on doing alternative treatment whether I do chemo or not.  So if I don’t do chemo, I’ll still do the alternative.  They want me to do chemo as a precaution in case there is a stray cancer cell somewhere in my body.

Yesterday I went and had my Menopause injection.  My monthly injection of hot flashes, moodiness, memory loss, and big chin hairs.  The chin hairs!  I had chin hairs before.  Let’s face it, we all have them.  I even had a crazy long one on my cheek 2 months ago.  It was about 2.5cm long.  How did it get that long without me noticing?  I guess my eyesight is slowly getting worse too.  And I’ve had chin hairs for a few years now.  I find the odd hair at the bottom of my chin.  But now it’s turning into a lawn.  You know when you see post-menopausal women with tons of long peach fuzz?  That’s what’s happening to me.  Soft peach fuzz.  But then there’s the occasional strand that is as thick as horse hair.  It’s all growing so fast.  I can’t be bothered to keep up with it.  I don’t care about the majority of it, but I do pull out the 2.5cm ones when I notice them, and same goes for the horse hairs.  Anyways, it’s temporary.  Either I’ll do chemo and they’ll fall out with the rest of my hair, or they’ll hopefully go back to normal growth if I decide not to do chemo.  If I don’t do chemo, then I don’t need to continue with the Menopause injections.  The Menopause injections are to safeguard my ovaries and hormones from chemo…and to give me extra warmth on my chin, of course.

The hot flashes are driving me nuts.  They weren’t so bad when I was in Maine.  But for the three days since being back home, they have been really bad.  And it’s not because of my Menopause injection, because I only got the injection yesterday and the hot flashes were really bad the day before that.  I wonder, if I use a thermometer, will it show my body temperature rise when I have a hot flash?  Luckily, the hot flashes haven’t been bothering my head as much as they were a few weeks back.  That’s good.  When I get a hot flash my back suddenly gets very warm.  It feels like I’ve had my back up against a fireplace.  I don’t sweat from them though.  Maybe that will come later.

I also went to the physiotherapist yesterday.  This was only my second time seeing her.  My arms have improved a lot since I saw her last, 3 weeks ago.  She says my arm movement is at about 95% of what their normal range is.  I can move my arms so easily now.  I get sore armpits when I walk a lot or if I’m carrying too much weight in my purse while walking.  They feel like there’s a football jammed up underneath them.  It’s weird.  The physiotherapist says that I shouldn’t carry more than 5lbs around in my purse or bag, groceries, etc., or more than 10lbs when I’m carrying something with both hands.  She says that this is a very long term thing.  Like a lifelong thing.  It’s because of the lymph nodes being gone (2/3 of them from my armpits).  I do often carry more than 10lbs though, and more than 5lbs in my purse.  I still carry groceries and things.  But what this really means is that I eventually need a boyfriend to carry my things around for me.  Ha.

I don’t know what I’m going to decide on the treatment front.  It’s hard to be around people when I’ve made decisions because there are always some people who have horrible things to say to me based on my thoughts, ideas, and decisions.  There are always people who think that I’m doing too much traditional medicine methods and not enough alternative options.  And then there are others who think I’m doing too much alternative methods and not enough traditional.  Each side thinks I’m going to die if I don’t do what they want me to do.  And there are people who think I’m not doing enough of anything no matter what I do.  I’m told I’m not researching enough, I’m not taking enough vitamins, I’m not eating enough of the right foods.  I cannot keep up with their demands.  I can’t read and talk about cancer day in and day out.  I need lots of time to distract myself because it gets to be way too much and is more stressful than you can imagine.  Do not expect me to read every little bit of information that contains the word cancer.  I am not going to find the miracle cure for cancer for you.  And you don’t need to constantly tell me that you have the answer and I am wrong.

It’s a really awful feeling when regularly people tell me that I am wrong and that I will pay the consequences for it with my own life.  People I love and care about and trust.  That’s what makes decisions the hardest.  When you know that people don’t believe in you and aren’t going to support you in choices if they don’t like them.  It makes me feel that I’m always wrong and not able to do anything right.  It makes me doubt myself.  It makes me feel that I’m going to die no matter what I do.  And it tempts me to leave and go live in a place where nobody knows me and nobody knows where to find me, and if I die, then I die.  But I don’t want to die for a long time yet.

I don’t expect you to understand.  I know people are worried, and I am worried too.  I am sure I am more worried than anyone else and I’m doing what I can, but I can’t do more than what I can do.

I was advised by someone to have a Chemo Project.  Something that I could do while going through chemo.  I thought I’d learn to crochet so that when my mind can’t focus on reading, then I can crochet instead.  I’m starting with crocheting the edges of my towels.  It’s a lot faster than I thought.  Soon enough, I think I’ll end up crocheting all my parents’ towels as well.

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On the car ride home from Maine I tried crocheting and found that it doesn’t make me carsick.  I always get carsick.  I get carsick when digging around in the car while it’s moving.  But for some reason the crocheting didn’t make me carsick at all.  Good for me.  I’m wondering if it has something to do with menopause.  Because as a kid I would be carsick constantly on almost any road.  As I got older, it got a little better.  So maybe by the time you hit menopause, the carsickness fades out even more.  I wonder if I’ll regain my carsickness after I’ve stopped doing menopause.  I’ll let you know.

Many people have asked why I am not working during all of this.  Well, my job was very physical and there was no way I could continue doing it before my arms are completely better, even then I’m not allowed to carry heavy things because of the lymph nodes being gone.  And I didn’t have the type of job where I can take an extended period of time off work.  It’s not fair to the business nor the people working there.  At the same time I also was losing the place where I was living.  This came about before I was diagnosed and I needed to move out by July because my flatmate’s boyfriend was moving in.  So even if I was able to keep my job, I would be having to look for a place to live in the middle of all of this.  And since I can’t afford to live on my own, I’d have to find another flatmate.  What would I say to a potential flatmate at that time?  “Hi, I’m 27, have cancer, am about to have a double mastectomy, may do chemo and radiation, I’m doing fertility treatment which has buggered me up, am going through menopause so I’m moody and am having hot flashes.  But hey, hopefully I can maintain a job during all this so that I can pay rent if I don’t die.”?  Maybe if I had had a desk job that didn’t require me to do much work then I could have taken some time off and then gone back to work.  This is also why I moved back in with my parents.  Because if they weren’t around, I would be on the street and jobless, simple as that.

We brought some lobsters home from Maine with us, and cooked them.

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5 thoughts on “15th Post – Maine and Back

  1. Kev

    Maia Papaya! I love it!
    Trust your gut! It’s the best choice you can make. Also, you totally look like a model in that “too cold to swim” photo!

  2. Mike Murphy

    “I can’t do more than what I can do.” Words we should all live by.

    I love the Maia Papaya photo too. That’s great. Looks like you had an amazing trip.

  3. Lauren D

    Hermione gets carsick too!!! I can’t believe that I never knew that about you until now.

    Lots of love and positive thoughts during what is a difficult series of decisions and treatments no matter what. Love you and think of you often. Make sure you do only what you decide is right and best for you, as I think you have done all along. Anyone who thinks you should be working is an idiot – that’s my professional opinion, expressed in my usual subtle manner.

  4. Hi Maia Papaya! I LOVE that you asked for more time so that you could get clear on what you want to do. It takes courage to trust yourself enough to listen to your gut and to act on it.
    Love you and support you all the way, Rua.

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