Babies?

Meet your match, get married, buy a house, have kids.  The majority of my female friends will be having kids later this year or already have kids. A couple of years ago my facebook wall was plastered with wedding photos from various friends.  Now the babies are all over the news feed.

Since we purchased our house last year, I have been getting questions like, ‘when are you guys going to have kids?’ or ‘have you guys discussed having children?’.  This is now a fairly difficult question to answer.  A simple, ‘oh we aren’t there yet’ is the easiest response that I usually give.

I have a 50/50 chance of passing this gene onto offspring.  So there are a few options that we are considering.

1) Conceive naturally, then get amniocentesis to determine if the gene was passed onto the child.  At this point, you must be sure that you will abort if the gene is passed or you have just taken child’s right away to chose to be tested or not when they are an adult.  This is an ethical dilemma.   This is also all covered by OHIP.

2) Conceive naturally, have the baby, try to not think about the 50/50 chance you passed the gene on. Hope that your kid wants to be tested when they are an adult.  Accept that if they develop gastric/breast cancer, they had the choice to be tested or not and watch them die.   It’s a tough thing to swallow!

3) In vitro fertilization.  From what my genetic counsellor knows, no one has gone this route before with CDH1 gene but it is possible.  You can extract the eggs that don’t have the gene so it won’t be passed.  Once the egg has been fertilized and implanted, you can under go amniocentesis to be sure the right egg was chosen or just hope for the best.  Amniocentesis carries a risk of causing an abortion so this is a little scary.

Also, from what I know about in vitro is that you have to inject artificial hormones to help stimulate the eggs.  These artificial hormones carry a risk of developing breast cancer.  But what if you already have a 40% chance of developing it on your own?

Another thing that my husband and I have been discussing when to have the kid(s) – before or after the prophylactic gastrectomy. There is one study that showed that you can have healthy children post prophylactic gastrectomy.  It is just considered a higher risk pregnancy and you should be monitored closely.  You also have a very high chance of becoming anemic and needing blood transfusions.  This is fairly common.

Here are some pros and cons we’ve come up when having the kid talk.

Pros of having kids before:

– will have a closer to normal pregnancy

– there is a low risk that I will get full blown cancer over the next few years
– more energy to raise them

– if they remove my stomach and find cancer in it and in the lymph nods, I will may have to go through chemo which will affect the integrity of the eggs.

Cons

– I approach closer to the average age where people develop HDGC

– more mental stress that I may be a walking time bomb

– We will have small children to take care of when I go into surgery and through the recovery

So far we’ve concluded that we should take care of what we do know first and then think of all the secondary things.

We have a meeting with the fertility specialist Feb 26th, the meeting with the Gastroenterologist in Toronto (who did my mom’s surgery) and also a meeting with a dietitian to discuss how my life will change post total gastrectomy on March 12th.  After those meetings are done there will be no more medical consults and just the decision of when to have the stomach removed.

Dun Dun Daaaaaa…..

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No news is good news

I was originally booked for today to follow up with the Gastroenterologist to discuss the results of my recent endoscopy.  Yesterday afternoon, I received a phone call rescheduling my appointment to Feb 5th because the Gastroenterologist was no longer available today.  Work has been VERY accommodating for all of my appointments and I was able to work my schedule around the appointment booked for today.  When the office called me to reschedule the appointment, I thought to myself, ‘uh oh, who am I going to affect this week’.  After the phone call ended, I pulled up my calendar on my phone and…I wasn’t scheduled to work that day.  What are the odds that the one day I had available during that week was the day they booked it.  It was like it was meant to be that way.   I am really happy that I did not have to call my manager again to ask for another day off last minute.

The thing with specialist appointments is that you make time for them vs. requesting when to be booked in.   It’s also very inconvenient to take time off work last minute because I have to re-schedule all the physio appointments that were booked for me that day.  It’s like a domino effect and I really don’t like re-booking patients.  Up to this point, I rarely took any sick days and I booked appointments around my working schedule.  I’ve now come to accept that if I don’t go to these appointments, I may not be around to work in the future.  I’d like to give props to my manager again for being super supportive.

Although I was upset I’d have to wait another couple of weeks to get the results, it all worked out for the best. I took advantage of early day off (since it was too late to try to book patients into my schedule) and went to the local ski hill.  Monday-Wednesday, they have a cheap $20 all day lift ticket.  Although it was freezing outside, it was great to have my first ride of the season.  Near the end of my time at the hill I saw something I had never seen before. It was a rainbow circling the entire sun.   I had to take a photo of it, so I quickly snapped a few photos with my phone before my fingers froze off.

Awesome rainbow at the ski hill

Awesome rainbow at the ski hill

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It’s funny that it happened on this day while I was doing one of the activities I love the most.  I can’t help but think that today’s events were a sign to let me know that everything is going to be okay.

12 x 4 = 48 Biopsies later

Today was my repeat gastroscopy with biopsies.  Appointment was at 9:30am this time.  I was thankful for that because I woke up this morning starving and I avoided the kitchen all morning.  I chose my clothing accordingly because I remember last time, I didn’t remember getting dressed after the procedure was completed and I wanted to avoid a wardrobe mishap – giving the everyone in the recovery room a free show.  I was taken in promptly at 9:30am.

I was concerned about the IV since I remember what happened last time.  Poke poke poke…nurse trade off…poke again and in.  Next day, big bruise that lasted a week on my wrist.  Made for a good story.  This time, I psyched myself up and told my body to please let the IV go in easily this time.  After 1 minute of dangling arm pendulums and some vein tapping the nurse attempted to put the IV in and BINGO, it went in.  Then the waiting time began.

I waited in some chairs in the recovery room for about 45 minutes before I was taken into the procedure room.  While I was waiting, other people were placed beside me in queue.  After the first 15 minutes, I started to get a little bored so I pulled out my phone and started taking self portraits to help document the journey.  I did them secretly because I didn’t want anyone in the recovery room to think I was a weirdo.  No one was beside me at that point.  About 5 minutes later, another woman was placed beside me.  Then, I heard a high pitched farting noise from a nearby patient.  Note: for those of you who do know me, know that I ALWAYS find farts funny.  I tried to not laugh out loud. Then it continued, as if the person was intentionally playing an orchestrated tune from his bottom.  I managed not to burst out in laughter (thank goodness!!).  I realized later that colonoscopy procedures cause you to pass gass afterwards.  That will be something I can look forward to in the future. Although the risk of me developing colon cancer is lower in my pedigree, I will start screening when I’m 37.

I was taken in at 10:45am.  The only difference with this endoscopy one was that there was a larger team working with me.  Before I fell asleep I heard the oncologist talking to a medical resident about the gene and how she was going to take 12 x 4 biopsies.  She was going to need two nurses to help out.  Then I faded into nice sleep.

I woke up in the recovery room and managed to get dressed without any issues.  I don’t remember getting dressed again so I’m glad I chose something easy.  This time I was able to walk to the lobby while mom went to get the car.  Mom put me in a chair near the window and said, “Watch out for the van, I am going to pull up to the window”.   When she arrived at the front, she was wondering why I hadn’t come out yet. Through the glass windows, she saw that I was sitting in the lobby chair, sawing logs.

Follow up for this procedure will be Jan 22.  I know the biopsies will be negative.  But I’ll keep you all posted!

To end off, here is a picture of my IV while I was waiting in the waiting room.

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The results are in! One of many…

Good news! The biopsy came back negative. Yay! But the adventure continues….

I was booked for 3:30pm and arrived with plenty of time to spare.  I know how it can be difficult when you have a fully booked schedule and your patient doesn’t show up on time.  Oh, and that is the patient who is going to ask you a whole bunch of questions.  And it’s their neck, low back, both of their shoulders, and little toe (which is a new problem) you have to treat it all in just 10 minutes.  Needless to say, I’d rather be early for my appointments.

We saw the Gastroenterologist at 4:15pm.  I was glad we were taken in a little later because Brandon was on his way from work and was stuck in traffic. He arrived right at 3:30pm but I was worried he was going to miss the appointment.  We waited the extra time because the Gastroenterologist took a person booked just after me before me because she knew it was going to be a quick appointment and that she would have more time to spend with me.  I really respected that.   On top of that she had had a chaotic day.  Due to the cold weather, a watermain burst in two of the local hospitals she worked at which flooded the floors and she had to scramble to get her patients looked after.

At 5:15pm I left the office.  Let me re-iterate, I left at 5:15pm!!  That is a whole hour later then when I was taken in…I had an hour with a specialist…not to mention the best one in our region.  I figured I would have about 10 minutes with her to ask all my questions, get the pertinent information about my biopsy and we would be whisked out the door.  I was amazed, she spent a full hour speaking with me, my mom and Brandon.  She showed me pictures of the inside of my stomach and discussed the pliability of it.  I learned that you want good pliability inside your stomach vs. a leather bag like stomach.   The inside of your stomach looks just like the text book pictures.  Pink and round with some striations.  I was able to ask ALL of my questions and then some.

I asked her when she would be booking and she said, 4-6 weeks. At that point, I was a little shocked about how fast I could get it out.  It makes sense though, because it would be treated like a regular cancer case they must get you in quickly.  I’m not ready for 4-6 weeks.

I recall my mom telling me that the Gastroenterologist took ‘random’ biopsies’ during the endoscopy.  I asked the doctor where she took the biopsies from because some literature has suggested to take a minimum of 30 biopsies from various anatomical zones –   antrum, transitional zone, body, fundus, cardia.  She said that she did not to that many or from some of those zones (not typical of a routine endoscopy).  She also asked if I could email her the journal articles I was reading.  It’s amazing she wanted to see the articles I had read and I got her personal email….Wow!!

After the discussion, the Gastroenterologist thought it would be best to do a re-do and take more biopsies and also allot more time for the endoscopy to be really thorough.  Mom and I thought it would be redundant to do it again, given that I would likely get the stomach out this fall and the result will likely be negative again.   I also didn’t want to take an appointment slot for someone else who may really need an endoscopy completed.  The Gastroenterologist preferred that we did it again because then if it was positive, the surgery would be pushed ahead instead of me waiting until this fall.  All and all, too much screening can’t be a bad thing in this case.

The specialized centre for CDH1 mutation carriers is in Toronto.  There is a great clinical team who has much experience dealing with CDH1 mutation carriers.  The pathologist is also specializes in analyzing the stomach post gastrectomy.  My mom had hers done in Toronto. It seems to be the place where it’s at!

However, it is more convenient to do everything in Hamilton.  I have developed rapport with the Gastroenterologist here.  She is a wonderful woman and a specialist in her field.  She even offered to do my follow ups if the Gastroenterologist in Toronto does my surgery.  On a side note: Gastroenterologist only receive $4 for clinical visits.  That’s 3x less than what we received for physiotherapy visits in the past (makes $12.20 look good!).  This is becoming a tough choice.  I will wait until I meet the Gastroenterologist in Toronto before I make my final decision on where to do the surgery.  Both of the Gastroenterologist know each other so they could always share notes…

Anyways,  I’m set up to go back on Tuesday for another endoscopy.  Nothing to eat or drink Monday night after midnight…sedation and more funny stories await!

The not so patient patient

Waiting for these test results has become something that seems all too familiar.  It reminds me of waiting for my final marks from an exam or an acceptance letter.  You forget about most of the stress after the test or application have been completed and then the waiting game begins.  As the response date approaches, you begin to think about it all over again.  I know that this is only the beginning of waiting for results.

I told mom that I was excited to receive my biopsy results.  I’m not sure why I would be excited – but I am the kind of person who gets exited about a lot of the little or big things.  Heck, I even get excited about oddly shaped potatoes.  See exhibit A below.

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I would rather be excited about the results then scared.  No matter what happens, it is what it is so I mine as well take it with excitement.  I guess I’m excited to not have to wait for this result anymore.

My husband, mother and I all believe the biopsies will be negative.  This is the situation for most people with the CDH1 gene mutation.  This means one of two things for me.

1) The surgeon took the biopsies from areas of my stomach that were fine and there are no signet rings cells in my stomach anywhere, YAY!

2)  The surgeon took the biopsies from areas of my stomach that did not have any signet rings but they still exist elsewhere in my stomach – Based on research this is likely the case, BOO!  If the surgeon finds the cells – then I probably will get my stomach out sooner than later.

In either case, I plan to ask the surgeon as many questions as I can before she runs out the door on me.  I’m fairly sure I will get it out sooner vs. later but the fear of having a difficult pregnancy in the future is always scary. Being a specialist, I’m assuming she won’t have a lot of time to talk and I should be concise and to the point.  I have drawn up a list of questions.  So with that being said, I leave this blog with a clip that my family and I joke about whenever someone is asking a lot of questions.  I hope to have some more answers tomorrow.

Happy New Year and Kubler-Ross’ Five stages of Grief

I would be lying if I said I didn’t think about CDH1, HDGC and lobular breast cancer on a daily basis.  I try to keep telling myself that I am no different then I was on Dec 5th, 2013, but it is a difficult thing to wipe right out of your mind.  I feel like I run through Kubler-Ross’ Model of five stages of grief on a daily basis.  In case you can’t remember back to your psych 101 class here they are again.

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance

Denial happened mostly when mom got her diagnosis and when I learned that I could have a 50/50 chance of inheriting the gene.  I realize this after getting my diagnosis.  I think I didn’t get tested for so long because I believed I was negative.  I still believed I would be negative while waiting for the results.  I did prepare myself mentally for a positive result but there was always that hope that I didn’t inherit the mutation.  I also didn’t realize how the knowledge could change the way you look at things in your life.

Anger, so far, has only happened the weekend after I got the diagnosis when I was participating in a spin class (which made the work out that much better – boy did I turn that bike dial up).   It lasted maybe 5 minutes.  I don’t think I am really capable of being really angry.  I’m just not that kind of person.  Not to mention the music was really pumping in that class and my endorphins were running pretty high.

Bargaining happens a lot – do I need to do this surgery now? Maybe I won’t get the cancer? What if they remove my stomach and there isn’t any cancer there? If I remove my stomach, I won’t have to worry about getting fat.  There are a lot of things that I think about.  I ask myself the same questions a lot and the answers are always different. Haha. I’m not a very decisive person when it comes to myself.

Depression – I haven’t hit this stage and I hope I never do.

Acceptance –   This is why I decided to write this post.  Over the holiday, I saw a lot of my family and friends who had many questions but were also EXTREMELY supportive and uplifting.  There is not a day that goes past where I am so thankful to have such great people in my life. I’ve realized that talking about this diagnosis and my future without a stomach has really helped me accept what is going to happen.  Thank you all for listening to my rants and raves about this gene mutation.  I feel very lucky to have this choice and be able to stop this cancer before it stops me!

Dec 31st, 2013 was one of the best New Years I have had surrounded by friends and family.  2013 may have ended with some unfortunate news but 2014 will bring much more adventure and awesome into my life.

Kia Kaha!