October – two things to recognize…okay maybe three

Hey -yo!

I’m still here, alive and well.  I’m currently sitting in my favourite local Starbucks shop with my fall favourite…Pumpkin Spice Latte of course.   Recently, I decided I no longer wanted to pay an extra 70 cents for a lactose free milk and just got it with regular milk.  I wouldn’t recommend drinking a full glass of milk; however, I have found that the tall cup size latte gives me minimal discomfort.  Also, I ask them to add only 1 pump of the syrup to decrease the sugar content and no whipped cream.  What would fall be like without pumpkin everything, right?

Anyhow, I’ve been meaning to write a post for a while now but have been struggling a little bit with the content.  October has given me a new opportunity to write about three things close to my heart.

One of the main reasons I have not posted throughout the summer was that it was a little bit of a summer of highs and lows.   October 15th is Pregnancy and Infant Loss Remembrance Day and I wanted to discuss something that I recently experienced that society doesn’t like to discuss.  I think we should.  I’m breaking my silence.

Following our IVF disappointment, we decided that we were okay with trying to conceive naturally.   I don’t know if technology will be advanced enough cure stomach cancer; however, I do have hope that the medical world will have better ways of detecting the cancer, screening for it, and managing it.  After all, in the CDH1 gene mutation was discovered approximately 20 years ago and look where we are now.  I’m here.

Shockingly, I became pregnant immediately.  On June 14th, I had a positive pregnancy test – I was 6 weeks pregnant.  We were excited.  Who would have thought it would have happened so fast?  My cycle has been fairly irregular since surgery so we thought it would take a long time.  As the weeks went by, we starting thinking about our new future with a little one.  On the Canada Day long weekend, we gave our immediate families Happy Canada Day cards with the announcement inside – it was week 8.  I didn’t have my first ultrasound until week 12 and we knew we weren’t supposed to tell anyone until after this time but we couldn’t keep the secret much longer.   After all, if anything was to go wrong, we would want the support from our families.

On July 25th, we made our way to the hospital for my first ultrasound.   Both of us were nervous, it would be the first time seeing our future child.  The hospital was busy and we waited 2 hours past our appointment for me to be called in.  Finally it was my turn.  The ultrasound tech told me to lie down and then started taking images of my abdomen.   About five minutes in, she stopped and went out into the waiting room to get my husband.   He joined me and the tech left again.  Minutes later, she returned with another man.  I knew something wasn’t good.   Both of them reviewed the images.  He paused – looked at us and started introducing himself as the Ob-Gyn at the hospital.  “I’m sorry but you are miscarrying”.   I don’t think I’ll ever forget that day just like I’ll never forget the day of, “I’m sorry but you tested positive for the mutation”.  He went on to explain that the fetus stopped growing at 8 weeks and asked me if I had any cramping or spotting.   I did not.  I had what was called a “Missed Miscarriage”.  It means the fetus had stopped growing but your body still thinks your pregnant so nothing happens.

Both of us were devastated.  I described it as a deep, deep sadness.   Did I do something wrong? Why did this happen to us? Did the residual IVF hormones release an egg that wasn’t ready?  We’ll never know.  But I doesn’t end there, my body thought I was still pregnant and I went for another week and a half before I was given medication to pass the tissue.  It took another month for my hormone levels to drop back to normal (the time when a pregnancy test shows negative)  and a total of 9 weeks after the miscarriage for my period to return.  In May I was pregnant, by August I was not.

I have learned that I heal from speaking to others about my experiences.   In discussions with friends,  I learned that many of my other friends and colleagues have also had miscarriages.  One in four pregnancies result in miscarriage.   It was more common than I had originally thought.   Some say , “Oh, if left to go to term, it would have had serious health issues”.  Although this is likely true as miscarriages that occur prior to 12 weeks are due to chromosomal abnormalities, the flip side is that it could have also been perfectly healthy and gone to term.  You morn the loss of what could have been.

Time heals and we both are doing well.  I am optimistic about the future.  But now October 15th has a greater meaning to me.

Infant loss

The second thing I wanted to quickly recognize is Breast Cancer Awareness Month.  Since the stomach cancer is a non-issue for me anymore, the only other cancer I know I am at high risk for is Lobular Breast Cancer (40-60% lifetime risk).  The older I get, the more I start to think about it and having my Ontario Brest Cancer Screening letter come to me every October is always a reminder that I’m not in the clear.  Which brings me to the marketing for getting genetically tested.  People may not realize but there is a large psychological component associated with genetic testing and testing positive for something.   I would HIGHLY recommend speaking with a genetic counsellor prior to deciding to be genetically tested.  They can identify all the benefits and RISKS to being genetically tested.  They can also be there to support you depending on the outcome.   It may be a simple blood test but there are many other implications.   The most stressful time for me was between finding out I was positive and deciding what to do next.   I am so thankful for my genetic counsellor.
Number three – In just over a week I will be celebrating my 33rd birthday.  It’s three years more than my would be grandfather who passed away at 30 due to stomach cancer.    Even though I may be getting older, I’m thankful to be getting older because I honestly think I wouldn’t have made it much longer if I didn’t have the chance to prevent this cancer.


Top 5 events in my life

My brother and I have always been very close.  When it came to my wedding day, there was no doubt in my mind that he would be my “Man of Honour”.  When we found out in 2009 that we had a 50/50 chance of inheriting the CDH1 genetic mutation, we decided it would be better if both of us had it or neither of us.

Yesterday, my brother, his girlfriend, my mom, dad and I sat around a large table awaiting to hear his genetic test result.  This was a situation all too familiar for our family.  In 2009, my dad sat with my mom to hear the result.  In 2013, my mom, dad, and husband repeated the same process.  Now it was my brother’s turn. Third time’s a charm right?!?!

Just before the genetic counselor joined the table, I told my brother, “remember when we discussed us both having the gene vs. neither? Well, I no longer feel that way”.  We all had a good laugh and then the counselor walked in.  After saying our hello’s she quickly cut to the chase.

“We all know why we are here today and I have good news for you, you are negative!” .  My mom did her happy dance and I immediately broke into tears.  This time tears of joy.  I am not a person who cries so this was a HUGE deal.  I didn’t even cry on my own wedding day! My dad kept his cool as always but we all know he was celebrating inside.   I jumped up and gave my brother a big hug.  We were all so happy.  The counselor then proceeded to show my brother the paper that describes what the test showed but she could tell that we were not paying attention.  After negative, I don’t think any of us heard anything else. Haha.

My brother had been preparing himself to hear positive for the past eight weeks.  He and his girlfriend had a game plan of what he wanted to accomplish before having his stomach removed.  We were obviously all so happy he was negative but also in a little bit of awe because we had heard about many families where more all siblings were affected.  The genetic counselor mentioned that it may be normal to feel guilt that he tested negative when I tested positive. But I assured my brother that that should be a non-issue.

Sometimes you may not realize how much something sticks to the back of your mind until it’s gone.  Although the test result was not for myself, I kept thinking of my brother.   It’s so fantastic to know that we can close the CDH1 book on my immediate family.

So now when I look at the top 5 events of my life thus far, this one definitely makes the list and a day that I will remember forever.

My brother and I at my wedding in 2012.

My brother and I at my wedding in 2012.