Pregnancy post total gastrectomy

I have been a little MIA from the blogging world over the past few months. Not because I didn’t have any ideas but I was saving up for some big news!

After last years adventures with IVF + PGD +PGS followed by a natural pregnancy and a miscarriage, we are happy to announce that we are expecting. I write this with both excitement and hesitation. As you all know, I am an optimistic person and prefer to see the light in situations. However, after experiencing a miscarriage, it is hard not to be semi-guarded when expecting. We announced to our friends and family after the infamous end of first trimester, but I did not feel comfortable posting anything onto social media. After speaking with Brandon and thinking about it long and hard, I decided that I wanted to blog about being pregnant without a stomach as it may help many other women trying to make that tough decision about when to have their stomach removed. I know I was there back in 2014 and it was not an easy one.

I was one week out from meeting with a fertility clinic as it had been almost 1 year since our miscarriage last year. I decided to take a pregnancy test about a week before the appointment and much to my surprise, it was positive. I was four weeks pregnant. This was back in mid August.

I had suspicion that something was going on as I was able to eat some ice cream, which I shared with the world on my last blog post. This happened to me last year before the miscarriage. I was able to tolerate sweeter foods easier. That was my first sign.

I called the fertility clinic to let them know about our natural pregnancy and they still followed me for the first eight weeks. At this point, I was transferred to a high risk maternal fetal medicine clinic. During my appointments at the fertility clinic, ultrasounds were taken at the six week and eight week mark. Each one filled with nerves that we would receive bad news and then joy that things were going well.

Once I was transferred to the high risk clinic, I first met with the regular maternal fetal medicine clinic and a genetic counselor to discuss the hereditary nature of the CDH1 genetic mutation as well as how one can go about testing a fetus for the gene. We had already decided in advance that if we had a natural pregnancy the child would not be tested until it is old enough to make the decision on their own. But for those who are interested, doctors are able to test for the gene using Chorionic villi sampling or amniocentesis. At this point, the expecting parents can decide to terminate the pregnancy or keep it. It is not an easy decision for anyone, that is for sure. In Ontario, these tests are covered which adds more layers to the decision making process of IVF with PGS/PGD (costly) vs. natural (testing is covered).

Thankfully, we were already prepared for all of these decisions as my genetic counselor discussed all this with me back in the day when I found out I was positive for the mutation.

I had morning sickness from weeks six to week fifteen. It actually was afternoon/evening sickness which allowed me to get through my work day but knocked me out at night. I experienced brutal nausea from about 4pm to when I crashed at night around 8pm. I attempted vomiting hoping it would make it stop but that is one thing that I have not been able to do since my stomach removed. So it was basically like being stuck with constant motion sickness for a nine weeks. Props to all the women who have this throughout the entire pregnancy and for those who don’t, you are lucky!

Around week six, I started to develop coccyx (tailbone) pain which has progressed into right sided glute/hip pain which radiates a quarterway down the back of my leg. Thankfully, I have many great physios friends who with who have been keeping it manageable. It is a real pain in the butt!!

In week 16, I was able to feel the baby kick and in week 17, I was able to see some kicks and feel them on the outside. They say that people may not feel these things until 20 weeks or later in pregnancy but I think us stomachless people are so body aware, we pick it up faster. The baby kicks more after I eat, I am assuming because all the intestinal noises from digestion must be pretty loud in there for it. The baby is sitting on my left side and fairly low.

In terms of weight gain, I have gained about four pounds since becoming pregnant. The Ob-gyn recommended that I gain 5-8lbs by week 20. I also recently completed my anatomy scan which occurs around weeks 18-22. Again, I had some ‘scananxiety’ but thankfully, everything was normal. I have still not gained much weight and I have a small bump. My Ob-gyn was not concerned about the lack of weight gain as it is too early to tell if the baby is growing appropriately.

Anyways, I plan to keep people up to date about how things are moving along. Pregnancy post gastrectomy is not a topic that many blog about so I think this will serve as a good platform to blog more frequently again.

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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.