37 Weeks pregnant – Home stretch

The pregnancy bump is in full force, although most identify it only on side profile.  I am all baby.

I am now onto the final few weeks of pregnancy and it has been another adventure to add to the books.  I left off at a 33 week update and I would say that the home stretch has presented itself with a few more twists and turns.  Pregnancy is an individual experience for every woman myself included.   I always wondered what the last few weeks would bring as those are the weeks your baby is packing on the pounds, taking whatever it needs from its host.  Yeah I said it, my baby is eating me.

I last left off questioning my iron and hemoglobin levels.  I had a clinic visit on March 11th where my levels were deemed low but not so low that something needed to be done.  But let me back up a little. Previous to this visit (end of Feb) is where I learned my levels had not increased but additional blood work was run.  I received a phone call on March 4th from the dietitian that my zinc level and albumin levels were also low.   Zinc is important for immune system function and albumin is a type of protein.

So what did this mean? Start taking 10mg of zinc 2x a day.  This brought my individual supplement total up to seven.  But wait there is more!  Zinc competes with iron and calcium when it comes to absorption in your body.   So they cannot be taken together and I need to take it twice a day, along with taking iron twice a day and calcium once a day.  You can see where this is going.  So for the past few weeks my supplement regime has gone something like this: wake up – prenatal vitamin and vitamin D, 2 hours later – Zinc, 2 hours later iron, 2 hours later, calcium, back to zinc, then iron….somewhere in there B12 and Omega 3.  Inevitably, I forget one of them per day.   I’ve tried putting them all in a bowl in the morning and slowly taking one whenever I head to the kitchen.  I feel for all of those people who need to take daily medication.

I decided to finish working on March 21st.  This would be about a month prior to my scheduled due date.  This was not an easy decision and it ultimately boiled down to my inability to stand or walk for prolonged periods of time, I was down to fifteen minutes.   The difficult part was that my brain was all gung-ho but my hip was saying, “Noooo”.  The baby has been growing and started to push right onto my sciatic nerve during movements and would send shooting pain down my leg.  I was fearful of falling while treating patients and this is what ultimately stopped me from working.  Those who know me, know that I LOVE my profession and what I do so when I stopped, it was like a piece of who I am was also taken away.  Not to mention, leaving my work fam for a bit.

But in my heart, I knew that this is temporary and my physio self will be replaced with a new self, “mom self” very soon and some of this void will be filled.   I did not really want a full month  (or more) off of work though.  However, I have always suspected that the baby may come early at 38 weeks.

As people know, I am a big believer of the universe’s plan and working in certain ways for certain reasons.  Let’s now jump ahead to my March 25th appointment – Ultrasound and clinic visit (week 36).

During this visit, I learned that my Ob-Gyn is a master at the sandwich approach of explaining things.  For those of you who do not know, this is where a person will begin telling you the great things, followed by some bad things but closing with great things again.

She began by explaining that the baby is growing well at an estimated weight of 6lbs 1oz and the blood flow to the placenta was looking good. Amniotic fluid, also good.  Then she asked how I was feeling and if I had been feeling the baby moving.  I replied, that there was lots of movement.  Here I thought, she would now say, “Great, see you next week for follow up”.  But instead I got, “the radiologist called me after your ultrasound and mentioned to me that your placenta looked odd”.  She followed up with drawing a picture that demonstrated that my placenta is calcifying and was getting calcium/fibrotic deposits inside.  This is normal for someone who is around 41-42 weeks term but advanced for someone who is 36 weeks. Especially since my 32 week ultrasound was normal.  From my understanding, this means that the placenta is hardening and eventually it will stop working as it should.  This was the centre of the sandwich.

Next she went back to the good news, “but your baby is growing and the blood flow looked good”.  Followed by, “I think we will want to induce you next week or the week after before it stops working as well”.  I think after I heard, “induce next week”, I just nervously laughed and left the clinic filled with many emotions.  Excited baby is coming very soon, shocked that baby is coming so soon, happy I only get a week maybe week and a half off work, upset that I only get a week or so off work, etc.  I’m happy my mom was with me at this appointment to clarify some details for me afterwards.  I’m pretty sure I went to La La land after that news.

However, I did ask if I could keep doing Zumba (since I was still doing it…36 weeks proud!). The answer was, “umm, I don’t think we want to increase your heart rate to make your placenta work any harder than it should”.  I knew this would probably be the answer but I needed to hear, “No”.    So to my Zumba community – I will see you all after the baby is born!  However, I was cleared to continue with Yoga and general gentle exercise.

Once we left the clinic, I was booked for another ultrasound on April 1st (the following Monday) as well as a non-stress test (to evaluate baby’s heart rate and levels in utero).  Then an induction date would be set based on these results.

Now back to my belief of universe working in certain ways.  Although it was shocking to know that our baby would be here before the second week of April.  I had always said, “I hope the baby comes around 38 weeks”.  This will definitely be the case now.  In addition, my hip continues to get worse  as the baby grows and maybe this was also another way to get me back to normal faster.  Finally, my eating has become more difficult and at my last clinic visit, I actually had lost some weight.  I now sit at a 16lbs weight gain with this little guy.

So everything for a reason right?  Brandon and I are really looking forward to meeting this little guy and having a new chapter open in our lives.  I know that labour and raising him will be a challenge, but what’s life without some challenges?  The harder the challenge, the sweeter the reward 🙂

 

 

 

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29 Weeks Pregnant – A well overdue update

Hey Friends!

This stomachless pregnancy update is well overdue. I made the mistake of watching “Tidying up with Marie Kondo” followed by listening to her entire audio book and have been de cluttering like mad the past few weeks. I wondered when the nesting would begin but Marie has kicked it into full gear. But today I take a tidying break to give you all a much needed pregnancy update.

Since my last update, I have seen my Ob-gyn twice. Once just after Christmas where I was referred for a blood work up for my iron levels as well as to measure my blood sugar levels, and more recently Jan 24th where I completed my 28 week ultrasound as well as got updates on my previous blood work .

Normally women who are pregnant complete a glucose test around 24 to 28 weeks to test monitor for gestational diabetes. From what I understand, this involves drinking a large quantity of a sugar beverage followed by a blood work one hour later. Due to the no-stomach-thing, I did not have to do this test. Thank goodness because I think it may have killed me. Or just given me violent diarrhea and full scale dumping. Instead, I completed some blood work.

Throughout the month of January, I continued to work my regular hours and regular duties. I continued to attend the gym 1-2x a week for Zumba and home yoga daily for about half an hour. My fatigue level started to increase near the last couple weeks of January and I started to look green and pale at the end of the day. I was falling asleep on the couch around 8:30pm every night but figured it was just regular pregnancy fatigue. I also started to have minor dizzy spells and felt slightly faint during the last couple of tracks of my Zumba class. You probably know where this is going.

On my Jan 24th follow up, I was notified that my iron level was low and I needed to double up on my iron supplements. I have been taking Ferramax 150mg since my surgery as stomachless folk often have iron absorption issues post total gastrectomy (TG). This made all too much sense after hearing my results and started doubling up immediately. Within a week my energy levels improved as well as my colour. I will likely have this level rechecked in the future to ensure I am not anemic and if it remains low – I will be referred for an iron IV infusion. This is also common post TG and in pregnancy (especially during the late 2nd trimester into the 3rd).

In terms of my blood glucose levels, I did not have gestational diabetes so this was a bonus. Continue eating ice cream, baked goods, and chocolate for me! I am convinced this baby will be 1/4 chocolate.

On this visit I also had a 28 week ultrasound. At this point in time, I had gained about 10lbs above my pre-preggo weight. The issue the Ob-gyn is concerned about with people who have TG’s is the baby not gaining enough weight. Much to my surprise, I was notified that the baby is currently in the 73rd percentile. Which means that he is bigger than average! I heard these scans are not the most accurate for actual birth weight but I’ll take it. I am hoping to have a 6-7 pound baby but if this scan is accurate, I may have an 8 pounder. Yikes! Maybe I better slow down on the sugar….

In terms of physical mobility, my right hip and pelvis continues to be an ongoing issue and although I am doing as much as I can for it (Yoga, stretching, Physio, and massage therapy) it is getting worse as the baby grows. I’ll spare everyone all the details as I do not like to complain but I am confident that it will all go away once the baby is born. I am determined to keep up with my physical activity though throughout all of this pregnancy.

In terms of eating, my appetite is the best in the morning to mid day. Although, I have been eating a lot, my weight gain has been minimal. This morning I was at an 11 pound gain. As he continues to grow, the baby is taking all the good nutrients he needs and my body composition has been changing. Less muscle mass…larger belly. I think I am all baby.  The evening is a different story. Often it is hard eat the same portions I was able to eat a month ago and I have issues with food getting stuck. Dinner time is the most difficult. I find standing and eating the easiest. Sometimes, I try to shift the baby position around as I suspect my intestines and pseudo stomach are getting all bunched up and the pipework is getting kinked. If I’m successful, I usually feel a good gurgle and the stuck food sensation goes away. I also try not to eat too late into the evening to avoid bile reflux in the middle of the night.

Believe it or not, my surgical scar looks better than it ever has and I think all this belly stretching is stimulating more cell repair. I also think this baby is breaking a lot of old adhesions from surgery. You go baby!

Anyhow, my next follow up is next week. I am down to the every two week appointments now. I am now 11 weeks off of my estimated due date. Homeee Stttreeettccchh!!

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Me at 27 weeks pregnant

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.

Ice cream

It has been just over two months since my last blog post. Time sure does fly! We are having a real summer here in southern Ontario – hot and dry. I have been spending much of this summer studying for an exam that involves progressing my diagnostic skills and treatment skills as a physiotherapist. But that is a whole blog in itself. Needless to say, I have been a little MIA from the blogging world.

But I’m back for another reflection post.

One food that I have always loved is ice cream. I have mentioned it many times in previous blogs and purchased the biggest cone to eat prior to saying farewell to my stomach. Not only is it delicious but often, eating a cone is associated with a fun social outing with friends or family.

Unfortunately, I still do not tolerate it well in larger quantities (i.e. greater than 1/4 cup). So every time we stop for ice cream, I am faced with a decision – eat it and risk feeling unwell (usually bloated, fatigued, and rapid heart rate) or kindly pass and often take a few licks off your husband’s or friend’s cone.

I came across a quote that states, “you miss 100% of the shots you don’t take” and I am not a person who likes using the phrase, “I can’t”.

Last night after a nice dinner with friends in Toronto, we stopped at an ice cream place called, “Bang Bang Ice Cream and Bakery“. They are a small ice cream shoppe that makes home made ice cream and apparently has some of the best ice cream sandwiches downtown. Once again, I was faced with the decision to pass or to try. This shop had a small 4oz size cup.

“You miss 100% of the shots you don’t take”

I ordered the 4oz cup of mint ice cream. Was it the best ice cream I’ve ever had. Yes. Was I scared to eat it. You betcha. Did I feel bad after? Surprisingly not as bad as I had expected.

Life is too short to pass on the things you love. Life is too short to be afraid.

You miss 100% of the shots you don’t take.

Happy August everyone!

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But first….coffee

I have never enjoyed coffee as much as I have over the past three and a half years and counting.   Maybe it’s because it’s easier to drink than water. Maybe it’s because it wakes me up. Maybe it’s because it helps me poop.   You may be thinking TMI but you know it’s true.

I mean, other people love coffee too, but there’s just something about drinking coffee without a stomach.   The caffeine goes to your brain fast, real fast.    Curious to know if it was just me or if it was a stomach-less thing, I decided to do a mini-poll among my stomach-less friends and we all decided that coffee is just great.  By the way, I don’t have a huge sample size to back this up (four people to be exact) but I’ve also seen on the support groups that I follow that those who can tolerate this wonderful beverage also love coffee.

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Breville Barista Touch with a shout out to “My Gut Feeling”

In November of last year, Brandon and I decided to treat ourselves to a semi-automatic espresso machine as an early Christmas gift to each other.  Since then, I have developed a greater respect for baristas and better understand why my Starbucks coffee may cost $6.  Thanks to YouTube, I have been able to become my own barista – spending countless hours learning about tamping, grind size, brew time, frothing, and or course latte art.

Besides the benefits I listed earlier, consuming coffee has other health benefits.  A recent study published by the British Medical Journal concluded that consumption reduced mortality from cardiovascular disease, coronary heart disease and stroke (1).  It also reduced the risk of developing specific cancers such as prostate, endometrial, melanoma, non-melanoma skin cancer and liver cancer (1).   Consuming coffee also reduced the risk of developing type II diabetes, gallstones, gout, and renal stones (1).  Heck, it even reduces your risk for developing liver conditions such as cirrhosis by half! (2).  When it comes to your brain, it may reduce the risk of developing Parkinson’s disease, depression and Alzheimer’s disease (1).  Women post total gastrectomy should be aware that it may increase the risk of fractures due to calcium absorption; however, if you add calcium (milk or cream), you may help reduce the effects (1).

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Cheers!

Besides the physical health benefits, there are other psychological benefits associated with coffee. It’s associated with many good times.  I’ve had many great conversations over coffee with friends and family.  I will also rarely blog without a coffee beside me.  Oh and it played a large role in getting through six years of university.

So for those who have made it through their total gastrectomy, can tolerate coffee, and love it as much as I do – go reward yourself with a sweet coffee machine. You deserve it!

References:
  1. Poole R, Kennedy OJ, Roderick P, Fallowfield JA, Hayes PC, Parkes J. Coffee consumption and health: umbrella review of meta-analyses of multiple health outcomes. BMJ [Internet]. 2017 [cited 2017 Nov 22];359j5024. In: Ovid MEDLINE(R)[Internet]. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=medl&NEWS=N&AN=29167102
  2. Kennedy OJ, Roderick P, Buchanan R, Fallowfield JA, Hayes PC, Parkes J. Systematic review with meta-analysis: coffee consumption and the risk of cirrhosis.   Aliment Pharmacol Ther [Internet]. 2016 [cited 2016 Mar];43(5):562-74. In: Ovid MEDLINE(R) [Internet]. http://ovidsp.ovid.com/ovidweb.cgi?T=JS&PAGE=reference&D=med8&NEWS=N&AN=26806124

 

 

Stomach Cancer Awareness Day – Nov 30th


Today I had the opportunity to attend the first annual and first in Canada to focus on Stomach Cancer conference.  It was organized by “My Gut Feeling” which the first not for profit organization in Canada dedicated solely to stomach cancer.   Similar to “No Stomach for Cancer“, it was founded by two stomach cancer survivors who realized that there wasn’t much information out there on stomach cancer nor a place to network or with patients, survivors, or caregivers.   It was founded in 2016; however, I stumbled upon their web page earlier this year.

I am part of many groups on facebook that provide support to those who have had partial or total gastrectomies or the CDH1 gene mutation.  Many people ask questions and they are from all over the world.   The great thing about My Gut Feeling is that they can help Canadians navigate the health care system and offer support as well as spreading awareness and advocating for Gastric Cancer in Canada.

I learned many things today and heard many personal stories. The thing about attending these conferences is that they always pull on your heart strings.  You hear personal stories from survivors, caregivers, or patients and it reminds you of where you’ve been and how far you’ve come.  You hear talks from medical professionals who push to advocate for stomach cancer research where there is very little funding.  You meet others who have been through similar situations and you realize that you aren’t alone.  Oh, and you usually get a lot of breaks with food because you know a chunk of people in there don’t have a stomach.

There are many more wonderful things that I could share about this conference as it was so fantastic; however, I wanted make a quick blog post before bed and it is about an event I learned about which is occurring this Thursday in Canada.

My Gut Feeling has organized a Stomach Cancer Awareness Day on November 30th.  In honour of this day the CN Tower in Toronto will be lit up periwinkle blue.  So will the city hall towers and the Toronto sign.  Not only that, the city halls and landmarks in Victoria, Vancouver, Edmonton, Montreal, and Halifax will light up as well.

If you are near any of these landmarks, I ask that you snap a photo of yourself near it with #MGF365 to help raise awareness about stomach cancer.

 

 

 

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.

Three Years! – Obviously a 3 year update…

Today marks three years without my stomach.  On May 23rd, 2014, I said farewell to my stomach…never to be seen again.

What can I say about three years without my stomach.  I’ve become happier, wiser, and more balanced.  I put my priorities in things that matter in life – health, family and friends, and fun.  Although this video looks pretty staged, I really like the message within and it sums up how my life changed after I dodged the stomach cancer bullet.

 

In terms of my weight, I have been sitting at 119-120lbs for the past month.  I’m now 5lbs off my pre-surgery weight. My summer shorts from last year, don’t fit anymore.  It’s weird to say that I’m actually happy about that.  Who says that?!?!

My energy level continues to improve.  The body is an amazing machine, if you push it a little bit at a time, it will adapt.  Look at Marne and Steve who are completing feats that even those with a stomach don’t achieve.  Amazing.

As for eating, I continue to push the envelope on what I can and cannot eat. Sometimes, you just want to eat something so you do it. You regret it later but the brain is a funny thing…give it enough time and it forgets the pain and you do it again.

The other day I watched the recorded, “Spotlight on Gastric Cancer” that was held in Seattle this year.  My mom and I went to the first annual one in Philidelphia and hope to attend another one in the future as it is a great opportunity to network with those in the CDH1+ community.

During this presentation a question was asked, “What sorts of things do you wish you would have known about at the time, or what kinds of things have you learned since that you wish you had the knowledge about from the beginning?”  It brought back a lot of early recovery memories and I thought it would be helpful to give my two cents.

>  If at first you don’t succeed, try, try, again.  Food is scary after you’ve had your stomach out.  You know, even 3 years out…some foods are still scary.  During my first year of recovery, I couldn’t tolerate sugar well.  Now, I can eat it in moderation (i.e. a full cookie, a small piece of cake, small portions of freshly baked breads).  I’ve had great success stories and some not so great ones.

>  Make sure you are mentally strong and have a good support network.  One thing about this CDH1+ mutation is that it really plays with your mind.  It’s great to have people to bounce ideas off of.  Having your stomach removed is like 10% of the recovery game, the other 90% is the mental component.

 >  if you don’t have anyone to speak with, you can reach out to the no stomach for cancer community, genetic counsellor, and social media

>  Facebook: CDH1 Mutation GeneSupport group for partial and total gastrectomiesStomachless Living Support Group – Support For Full & Partial Gastrectomies

>  Test your body. Push it a little and see how it responds.  A little bit of pushing will go a long way.

>  Go to a centre where they are well versed about CDH1+ as well as the prophylactic (curative) total gastrectomy.   My genetic counsellor as well as my surgeon are all within the same hospital network.  I continue to be followed annually.

>  Probiotics.  They have been a game changer for me over the past 6 months.  I think I was lacking something and now I’m afraid to stop taking them. I’ve noticed a great gain in energy since I started. On the same note – take your vitamins.   B12 deficiency is real and can have long term health consequences if your levels aren’t maintained. Also monitor your iron, calcium and vitamin D.

 

I’m sure there are a lot more other tips but I don’t want to drag this post on and on.  The past year has been even better than the previous two years. I am excited to see what this next year will bring to the table!

 

 

 

IVF and CDH1

*** NOTE: this is a sensitive topic to discuss publicly; however, I have seen some questions revolving around IVF and CDH1 so I decided to move it from a private post to a public post. IVF is a VERY personal choice, I do not intend to offend anyone with this post. It is purely educational for those curious about pursuing it ***

If you have needle phobia, this will cure it for sure.  Between blood work and self administering the medication to grow and retrieve the eggs – there are a lot of needles.  But it’s no biggie. Nothing compared to the process of getting your stomach removed.

Brandon and I had many, many, many conversations with each other and health care professional, family, and friends prior to deciding try IVF to prevent passing the gene down to for our future children.  It is a big personal choice and I hope not to offend anyone by choosing this route.   It was a difficult decision to discuss this openly online as well but in true Rachel fashion, I love to educate and help others, so ultimately I decided to blog about it for all those wondering about IVF.

In June of 2016 we met up with a fertility clinic in Toronto which we were referred to by our genetic counsellor.   This would be the 2nd time coming to this clinic as the first time was before having my gastrectomy.  At that time, the discussion was about preserving eggs in the event cancer was found during the surgery and I was required to go through chemo and radiation.

In June, we found out that we would be covered for a funded cycle for IVF  but would be placed on a waiting list.  Our date was October 2017.  Late Dec 2016 we were contacted by the clinic with an opportunity to bump it up.  We took it.

We met back up with the clinic in Jan 2017 to get the ball rolling with creating the genetic probe to screen for CDH1 in our embryos.   This is not available in Canada from what I know so the fertility clinic I attend partnered with a lab in Michigan to create the probe. This lab is called Genesis. Unfortunately, this genetic test creation and test is not covered in the funded cycle but we were prepared.

Genesis sent us a kit to collect DNA samples from my mom, dad as well as Brandon and myself.  The goal was to create a genetic marker that contained the code for the mutated CDH1 gene as well as be sure the baby receives got my dad’s copy. The whole thing is pretty complex so I’ll spare you all the details but you can Google, “pre-genetic diagnosis and screening” and learn about the process.

It took about a month or so to have the probe created. It was completed the 2nd week of February.   At this point I was good to go to start the IVF process.

I had to wait until the 1st day of my period prior to starting my cycle.  We were eager to start in Feb but my period never came. Figures…when you want it, it doesn’t come and  vice versa.

I learned through this process that I have polycystic ovarian syndrome which means my body doesn’t release an egg monthly. This would explain my irregular periods throughout my lifetime.

In March aunt flow decided to show up and we were off to the races.

I had to complete an ovarian reserve test which is an internal ultrasound to count the number of follicles in my ovaries.  The doctor started counting and said there was too many to count but ultimately she said over 30.  The average amount for someone my age was around 15.  I was in good shape.

What that meant though was that I was at risk for having ovarian hyperstimulation from the drugs.

I also had to complete a hysteroscopy. This is a quick 10 to 15 minute procedure where your fallopian tunes and uterus is flushed with water to make sure everything is clear.  Thankfully, I was clear.  The procedure wasn’t too painful. Just a sharp cramping sensation for a minute or less was the worst part.  I was clear and good to go!

On March 28th, Brandon and I signed a series of consent forms and then learned how to do all the medication injections. These are all done subcutaneously (abdomen, or upper thigh). On April the 2nd, the real fun began, I started egg stimulation. Every night I administered two needles – Gonal F and Luveris.  Brandon helped me with the Luveris as it involved mixing and I was not good at it.  These injections occurred from the 2nd until the 8th.  On the evening of the 8th, a third needle Orgalutron was added.  This needle prevented the eggs from being released prematurely.

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Meds for a few days

Generally I handled the hyperstimulation well. Near April 9th, I started to feel more fullness in my ovaries. More on the left than the right.  It also felt a little worse after eating.  Around April 13th, I started to get a little short of breath when walking up hills.

During this stimulation period, I was monitored closely.  This meant frequent trips to Toronto. The monitoring was pretty quick and painless. Blood work and ultrasound followed by a meeting with the  nurse who educated us on how to proceed with the medication.  Thankfully, Brandon was able to drive me to most of them so we would grab some eats before heading back home.  The round trip was about 4 hours.  Most of the time I was on my way home before my regular wake up time!  I had to go back on the 6th, 8th, and 11th.  After each appointment, I continued to work. Needless to say, it was a long and tiring work week.

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Injection time

Egg retrieval was on the 14th of April. Good Friday. This is also the day conception happened for potentially all my future children.  On the evening of the 12th, I took  only ONE shot called suprefact which triggers the follicles to be released.  I was back to Toronto the next morning for blood work to ensure the shot was successful.  The blood work needle was the only one that day.  The evening of the 13th was needle free. Hooray!

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Egg retrieval day

Egg retrieval was painful but necessary. A little pain for a long term gain.  By the end of Thursday I felt a lot of pressure and fullness in my abdomen from my ovaries. I also couldn’t walk fast without getting short of breath.  It was time to get these follicles out!

I was sedated mildly with a drug to make you sleepy as well as a pain killer. That being said, a needled is passed through the vagina into the ovaries to extract the eggs.  It wasn’t very fun and something I don’t really want to repeat.  Brandon got to come in as well to watch.  After all, this is how our kids are being created.

After the procedure was completed, I went back to a recovery room and slept a little. I had to wait there until I could urinate.  Then it was home time.  Once I got home, the pain from the procedure became more intense and I required some Tylenol.   I also slept off and on the rest of the evening.

The day after the egg retrieval, I was extremely bloated and had a lot of cramping.  It was hard to do transitional movements and difficult to take deep breaths.  It reminded me of what it felt like when my incision was healing post surgery.  To a much lesser degree though but still uncomfortable.  I spent the majority of the day relaxing and eating salty foods.  I think I was developing mild ovarian hyperstimulation syndrome.  It is recommended by doctors to eat salty foods to try get the fluid to leave your abdomen and go back into your bloodstream.  Needless to say, I spent the whole day eating as much salt as I could (salted peanuts, rice crackers, campbells soup).  I also took Tylenol throughout the day the assist with the pain.  I weighed 121.4lbs.  This is the most I’ve ever weighed post gastrectomy; however, it was all fluid weight.  By Wednesday, I had lost much of the weight and was down to 118.5lbs.  I also lost 4cm of abdominal girth due to all the retained fluid in my abdomen.

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No, I’m not pregnant. The bloat was real

The day after egg retrieval I started a medication called prometrium.  This is taken 2x a day for 14 days.  It is a progesterone capsule that helped to get my period and cycle back on track.

In terms of the egg retrieval, I felt ill prepared and did not realize that it would take such a toll on my body.  I am glad that it occurred on a Friday so I didn’t need to miss any work. My advice to people doing this in the future, is to take a couple days off work after the retrieval if you are at risk for OHSS.  The after effects were not very fun.

Then the wait game began.  It takes five days to see which eggs survive to the Blastocysts stage which is the stage required to be biopsied and tested for the gene.  During the testing phase, the blastocysts are frozen while the samples are sent to Genesis to be screened. This may take up to four weeks.

On April the 15th (Day 2), I received a call from the embryologist that of 18 eggs retrieved, 17 were mature enough to be fertilized and 15 were successfully fertilized.  Yay!  The  more the better because there will be a bigger pool to test as 50% of them will be positive for CDH1.

After I received this phone call, I started thinking about those 15 fertilized eggs and that they could potentially be babies. That was a sad thought that I would be eventually discarding the ones that make it to day 5 but test positive for the gene.  I wouldn’t be here if this was the choice given to my parents.

On April the 20th (Day 6), I received a call that only 6 fertilized eggs developed enough to be biopsied.   These biopsies were sent to Genesis. We had to wait 2-3 weeks for the test results.  At this point, both of us were crossing our fingers and toes that we would get at least a few that were negative so we wouldn’t have to make decision if I was to repeat the cycle.

On May 2nd, 2017, I received a voicemail from the genetic counsellor that my test results were in and to call her back. I immediately called her only to find out that of the 6 that were tested….5 had the gene mutation and the one that didn’t, was chromosomally abnormal and would have resulted in a miscarriage if implanted.   I was shocked because the odds were 50/50 based on stats for inheriting the mutation but we were 83% positive for the mutation.  Hearing the news was difficult but the logical side of me started to think about what were the next steps.  Going through it once was physically, emotionally and financially stressful.  I also had to repeat this information to Brandon. That was equally difficult. No one prepares you for this.

We were pretty hopeful that we would have had at least a couple of embroys to transfer; however, we were left with nothing.  This is why you test right?

As mentioned earlier, it was difficult to decide whether or not to pursue IVF for our future children.  Now we are faced with the decision…do we try again?  That’s a whole blog discussion on it’s own and I’ll spare you the details (On a side note, for those who are interested in discussing it, please send me an email).  I’m a big believer that the universe works in mysterious ways and although the reason may not be clear now, it will become clear in time.  There are pros and cons to both and there is no RIGHT answer.  There’s not even the most right answer.

I will leave a few for anyone trying to decide what to do:

  1. Be patient and don’t expect anything.  Just go with the flow.
  2. Be prepared to take time off work for appointments as well as any side effects from the medications/egg retrieval.  Although the whole monitoring process is only around twoish weeks, you are making visits to the clinic almost every other day.
  3. Investigate your insurance coverage options.  We were fortunate to have one cycle funded; however, our insurance did not cover any of the medications, genetic testing, or probe creation.

Yet another experience to add to the CDH1+ adventure log.