Good news

ocular toxoplasmosis

Good news!!

The opthalmologists feel that the lesion is very old.  Either scars from a toxoplasmosis infection (like the photo above) or a colobama (where my retina did not close properly during embryonic development).  They are passing me along to a retinal specialist but it definitely isn’t a metastatic spread.  We can now breathe a big sigh of relief, although if it is a colobama we will need to get the kids checked as it can be inherited.  It was well worth the over 3 hour wait 😉.

I now have my glasses, it’s funny how you don’t really realize how bad your vision is getting until it’s corrected.  It was good to know that legally I was ok to drive, barely but legal.

 

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Scared

So this past weekend my husband and I went to an optometrist.  It was the first time for me in almost 15 years.  I had laser eye surgery in my twenties and only started to notice my vision getting worse when I was pregnant.  If you’ve never read about pregnancy and glasses, basically they tell you not to bother.  The hormones can cause changes in your eyes and it’s suggested that you wait a few months after birth (or breastfeeding depending on what you are reading).  So I’ve been waiting to have my eyes checked.  It came as no surprise that I need glasses, but the lesion on my eye was a surprise.  With my history there is the posibility that it is metastatic breast cancer.  I now have an appointment with an ophthalmologist for more specialized testing on Thursday, which can not come fast enough.  My thoughts are completely scattered and I feel that nothing is getting my full attention.  Google isn’t helping as I can’t find anything that looks exactly like my lesion – I’m hoping it’s benign.

On a happier note the kids seemed to have a great Halloween, although E insisted on being carried between houses.

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October

October is over and I’m glad.  It’s my birthday month, but this is also breast cancer awareness month, has pregnancy and infant loss day and Ava’s birthday as well.

I’m beginning to hate breast cancer month – my husband’s work was raising money for breast cancer but totally ignored the fact that his wife had breast cancer, as though because he didn’t have cancer he wasn’t really effected.  It really annoys him when people tell them they know how he feels – really your relatively young partner had a sibling die of a cancer that they were then diagnosed with.

I also hate the fact that they cram all these feel good stories in the month.  I should be a poster girl for breast cancer.  A young woman, with young children – in fact the youngest isn’t yet a year old (gasp) – discovers she has breast cancer.  She gets into treatment quickly, the cancer is discovered early, she has treatment and 6 months after her treatment is done her oncologist releases her to her family physician. It sounds like a wonderful story and honestly if I didn’t know the dark side of breast cancer I might have been happy for that woman and thought she was proof that we are “beating” breast cancer.  For the record I feel we aren’t – yes people are living longer but they are still dying and living with the side effects of horrible treatments.  I think I’m just rambling but I’m having trouble articulating exactly how I feel.  I just wish we were “beating” cancer – then maybe I wouldn’t be so terrified that I’ve passed this mutation onto my children.

Happy birthday Ava

Today is Ava’s 3rd birthday 🎂.

I just finished watching the sun rise.  In some ways it seems so much longer than 3 years, it has been a hard, long 3 years.  But in other ways it still seems so fresh, just like my sister’s death.

The loss of a baby is hard – particularly once you have another healthy baby, people seem to expect you to move on and forget that loss.  I have to admit before we lost Ava I had never really given it much thought.  I mean I had a chemical pregnancy before but although I did want children it wasn’t a burning desire so I just kind of shrugged my shoulders and went on with life.  But now I understand only too well what the loss of a baby means and if nothing else I’ve learned that it’s not the same for everyone.  Some people are completely destroyed by even a chemical pregnancy and others “appear” to get back to their regular life/routine very quickly, but I can’t imagine how their life would be unchanged.  I think I’ve found one of the hardest things is the way no one else will acknowledge Ava or talk about her.  I don’t think I’ll ever forget my brother-in-law commenting on my husband’s necklace that contains Ava’s ashes and he didn’t even remember her name.  The only comment we got from his parents was his mom telling us she knew how we felt as she had a miscarriage at 8 weeks, I’m sorry but a relatively early miscarriage is not the same as making the heart wrenching decision to end your child’s life so they won’t have a life full of struggle and pain.  Although, when I was pregnant with E and started bleeding, I was devastated when I thought I might have a miscarriage.  So I likely shouldn’t speak to that fact.  But it definitely wasn’t helpful to hear when our loss was so fresh – particularly when that was all the acknowledgement they gave to Ava, not even a card.

My husband and I have both taken the day off and my mom took the kids last night so I could get up this morning and watch that sunrise and think about Ava and remember how much she means to me  and cry without M asking why or screaming in the background.

Busy

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.

Tornadoes!

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.

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Done!

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.