A Few Extra Days as Friends…

Well, yesterday I got a call from my surgeons office “We need to move your surgery to April 16, is that okay?”

It’s going to have to be I guess…the last week or so has been pretty stressful to say the least. I know the weight of what is going on has been taking a toll on everyone in my family. I have been having a bit of cold feet just because of the whole surgery thing; I haven’t broken anything before and haven’t needed to stay in the hospital other then when I had my daughter. I think that is the biggest thing that is making me bug out a bit still. I just need to keep reminding myself that I am doing this to be healthy for my family!

On the bright side I get to have a couple extra days at the gym and get to enjoy a few more good meals before I part with my stomach and a bit more time to finish the blanket I am making for my daughter. We had a nice weekend away at Lake Louise; ate some amazing food in Banff (hot rock cooking and fondue at The Grizzly House) and in the village of Lake Louise for breakfast at the Hostel. This weekend we are planning on cooking a turkey for Easter, and being able to have company is nice and will help to keep my mind off of what is ahead.  The next 2 weeks will sure be busy trying to get together with friends for a drink and some food, and to just enjoy the time together.

I can never say enough about how much my significant other has supported me through this; I know this isn’t easy on him and we definitely have been struggling here and there but we pull it together and work as a team after a brief period of weakness. He’s awesome at helping me talk through my emotions; and work things out. I am so thankful to have him here!

Well goodnight all, take care and all the best until next time.

One Month

Wow, the last 6 weeks have flown by and I cannot believe that surgery is a month away.  A lot has been going on in the last six weeks.  I have started going to the gym for circuit training.  Seeing amazing results every where…except my tummy where I really need it.  Guess I better work on the abs a bit more, but it has definitely helped with my mind set and being happier.

Rob and I are planning on going to the beautiful Rocky Mountain area of Banff/Lake Louise for the weekend at the end of the month. It looks like it may be a while before we get out for a weekend again so might as well take advantage of it now. I am excited to go because I’ve been but it has been a very long time, and I look forward to the scenery.

The weather is starting to get really nice here, above average temperatures and close to record highs, we’ve had so much nice weather the tulips and iris’ are coming up. I need to also start getting the zucchinis and some flowers started inside to prepare for planting in May. I can’t wait to get out there and be able to enjoy the weather and getting back to doing what I love. My daughter is going to play baseball this year which I am excited for because Rob and I are both ball junkies, plus Rob is going to coach the team. I am looking forward to watching her play, and hopefully this helps to keeps her mind occupied.

Only 3 more working weeks as I took a week off to do some Spring cleaning before this little disruption. Going to have some me time and some time for Chloe and I to spend together. I am very much looking forward to our couple of days together.

Right now we are just trying to keep busy, get into good habits, enjoy the weather and not think about surgery. Live each day and don’t worry about tomorrow, embrace the now!

Have a wonderful weekend and our thoughts are with each and everyone of you to stay happy and healthy each day!

It’s a Date!

Well, the big day has been set…April 13, 2015.

I received the message when I got home from work a couple weeks ago and immediately thought “this just got real!!” The only good thing about this being prophylactic is that I get the choice of when, so it can fit well with my schedule. April/May is a good time in Calgary, it’s warmer so I don’t have to worry about traveling somewhere to walk inside.  The neighborhood we live in has many walking paths that are easily accessible, with or with out an incline so I can get out and about during the day.

The last couple weeks have been very emotional for me, and I think it’s the accumulation of everything. Having to plan and make sure that all the bills are paid, some dinners are made to make Rob’s life easier during that time so he can bring Chloe to the hospital as often as possible and trying to sort out my Short Term Disability with my employer. I have recently become aware that I am OCD about planning with financials and getting things taken care of around here (this does NOT make things easier). I know that this is going to be extremely hard on Rob and Chloe while I am away and I want to make things as easy for them as I possibly can.

Well, the count down is on…10 weeks. All of the stories I have heard/read have been extremely inspiring and have really put a lot of my fears at rest as you have all done well so far. All we can do is hope for the best; keep active, healthy and strong!

I keep you all in my thoughts and hope that everyday is good to you!

The Waiting Game is on…

It’s been two months since I said okay to surgery. I have not at any point thought that this stage of the journey was going to be easy. I don’t feel that I have been naive (at least about some things) when it comes to knowing what to expect after surgery. But one can’t know everything, though one does strive to.

After starting the process to proceed with surgery in November, my “Mommy” clock started ticking again. Since then Rob and I have really struggled with the decision to have another child. There have been a few sleepless nights trying to decide whether to wait on surgery and have another child or to just do the surgery right away.

This truly has been the most difficult decision of my life. The accumulation of stress just trying to commit to an action was unimaginable. Causing sleeping, digestive and acne issues. Stress can do some nasty things to you, and hopefully this stress along with the normal everyday stresses in life (work, children etc) hasn’t caused other issues.  I find over the last few months I have been burping A LOT. It is excruciating, annoying and gross, and it would be nice if it would just stop already. I know that burping after surgery is going to be more present, but I hope not like this!

On January 7, I finally met with my surgeon. I had a few questions to ask just as a refresher and went just to be reassured the details of why I need to have the surgery sooner rather than later. Here are a couple of questions I asked:

1. Iron infusions are they required at some point? Not normally, Iron is absorbed through your small intestine and the duodenum, with a total gastrectomy the duodenum is bypassed, so the absorption is not as much so it’s important to take your daily vitamins.
2. Feed tube after surgery? No (thank goodness) there will be no feed tube…good thing I have a few extra pounds to use up while I wait the 5-7 days to heal before I can start eating again. Every doctor is different, make sure you ask yours what their plan is.
3. Are there issues at the beginning going back to a sedentary job? There shouldn’t be, may just need to be a on gradual return to work to adjust accordingly to the new routine and initial energy levels.
4. Sub-lingual B12 use instead of shots? The sub-lingual is still new, I can try it that way but I have to be monitored closely to make sure I am not deficient in any way.

I was reminded that I am doing this so I DON’T get cancer. That I am high risk and that stomach cancer is a “Bad Actor” as per my surgeon. It is a clear picture that gastric cancer is scary, the chances of it being found at an early stage (even with semi annual gastroscopies) are slim and that the survival rates at stage 4 are horrific. I don’t want to be a statistic, I want to watch my baby girl grow old and have children of her own.  I am taking my life in my hands and I accept that the rest of life is going to be a challenge with food; but it’s a better outcome than having to go through surgery, chemo and radiation and be forever scarred from those things. I am also extremely scared of going under the knife, I have only broken a baby toe, and been put under to have my wisdom teeth removed.  This is far more than anything I could ever imagine and the 10 days spent in hospital away from my family and the comfort of my home will be the most difficult thing I will experience.

I have my next gastroscopy on January 15, which is a chance for me to catch up on some well needed sleep as the sedation make me very sleepy, dizzy and really a useless woman for the next 48 hours. This one I am not so nervous about, because I know if they find something I am already doing what I need to to stop this from going any further. Here’s to hoping they don’t though. I am looking forward to getting this surgery over with and since meeting with my surgeon I have been quite relieved as I made the decision to have it done in April.

Now to wait for the Doctor to give me a specific date, then I can plan some good eats before the menu gets more than a little boring while making the adjustment to a new life style.

This year will bring many changes in appetite (or lack there of), a new wardrobe (I wish I enjoyed shopping more) and the challenges of healing and rebuilding my strength.

I wish you and your families the strength, love and peace, and many best wishes for this year!

Thank you for following along and for your support!
Nicole

It’s About Time

I just want to start by saying that all you CDH1/HDGC warriors are phenomenal.  The work that is being done by the foundations, medical professionals, and all of the families and supportive care givers that are going through this difficult process are such a strong group it truly is an amazing thing to see.

There recently was a thesis written by Marcie Casey posted here: http://www.nostomachforcancer.org/the-results-are-in-the-psychosocial-implications-of-hereditary-diffuse-gastric-cancer-hdgc about genetic councilors being able provide families with genetic mutations with sufficient information that is pertinent to our situation. I feel that the information in this article hits the nail on the head with things that could be done to improve the process.  The feed back that this group gives is so beneficial to the next generations of family members that have this mutation.

After watching my Mom go through 3 different surgeries and the different stages of recovery of each was difficult and the strength she has shown was remarkable.  My Aunt has recently had surgery for her TG, and her surgery was slightly different from Mom’s and her recovery has had it’s own challenges.  My Aunt and my Moms pathology came back negative for any signs of cancer. I am so happy that this result was found, but it really makes me second guess my decision to go through with the surgery next year.  I don’t know if I have the time to wait or if I shouldn’t take any chances and just get it done. I rack my brain thinking about what I should do.  It’s truly a very difficult decision to make.

We’ve taken a wonderful vacation to Southern California, went to Disneyland for the first time, which was AMAZING!! I felt like such a kid again and forgot nearly all of what was going on. I had the time of my life and so did Chloe as well. She had a make over at the Bibbity Bobbity Boutique and got to jump in line at the Royal Hall to meet Aurora, Snow White and Ariel; we had breakfast with the Princesses at Ariel’s Grotto with Mulan, Rapunzel, Belle, and Cinderella on her 6th Birthday. The weather was amazing, and the beach in San Diego was beautiful.

The last few months I have had a lot of time to reflect on what I am going to do about when the surgery is going to happen. I have tried to make a plan for the best time to not disrupt things with Chloe, to ensure that I can be outside walking as the weather is rather unpredictable here (4 seasons in one day is not uncommon in the spring/fall in Calgary) and as everyone keeps saying that walking is the best way to get the digestion moving.

I have had some tummy troubles and things not moving well or too quickly (sorry TMI) and just getting pains in that region kind of freaks me out. I don’t know if it’s due to stress and having to make the hard choice if I want to do the surgery in April and because I have to call 6 months before hand and stress about it for the next while. The last month especially I have thought about this maybe a little too much. Some advice about how to not think about this for the next 6 months would be appreciated.

There are some times where I feel like I’ve got a board pressed into my stomach and amid all the information I just can’t ignore the facts that have been given to me. I am REALLY nervous and scared but this is something I need to do! I feel that I can’t wait any longer, I just can’t risk it.

A lot of you have found out your genetic position and gone straight through with the surgery and never second guessed the time frame. Every day since July 2012 I have been indecisive about when I am going to do this. A lot of you have gone through the screening a couple times and they found something.  But Monday November 3 I made the call – albeit I missed office hours by 2 minutes (hehe) but got a call back this morning.  The date for the meeting isn’t until January – a really long time to wait (and very near to my next endoscopy) so I can fill out paperwork again and just for formalities sake. But she put me on the cancellation list for the paperwork meeting, though I have to call back at the end of November to see if they have their OR schedule yet to get penciled in.

So stomach there you have it, we will enjoy the next 6-ish months together and then be parted forever. I guess I will have to get my spicy food fix in so I don’t have terrible cravings after and do terrible things to my guts and as Steve Dang suggested, get fit as it helps with recovery.

Any other pieces of advice about this stage of the process would be appreciated.

Thank you for letting me share this journey with you!

Best wishes

Nicole

The Never Ending “Screening” Rollercoaster

On May 21 I had my MRI breast check which was normal except they looked at my liver and found a “likely to be nothing” hemangioma. I went for the ultrasound on July 7 to check the spot just to check; but alas they found nothing, the little bugger was hiding (good thing these are normally nothing)  It just creates all kinds of worry in my head, I’ve also had my fourth endoscopy on the 14th.  Always a bit nervous going into these, because you never know what they are going to find. Plus, the only stay that I have had was 2 nights after the birth of my daughter.  Not a big fan of the hospital thing.

This time I went into this endoscopy more relaxed  than I was for the last three, and Dr B felt that as well.  They gave me extra drugs this time so I didn’t wake up during the procedure. I didn’t thank goodness, plus the 15 hours of sleep for the rest of the day is always nice. I was sure glad I was able to take the next day off as well to get my bearings together. The only other thing that absolutely irks me is my inability to eat anything acidic/spicy/heavy for 3-5 days after; love those Arrowroot cookies, buttered bread and soup.  But it’s only a few days and it really truly isn’t that bad.  I know my aunt had issues with her endoscopy as well with the stomach healing from the biopsies.

Let’s hope I don’t hear from the doctor in the couple weeks and I can go on my merry way until I need to see the Mammogram folks in October. We are heading into year 3 of screening and my anxiety has greatly reduced.  I’ve also noticed that my activity level definitely helps keep my emotions in check and keeps those negative thoughts away.

I have been doing a lot of running lately, no so much to lose weight but to get fit.  I think that going into to surgery with more active lifestyle can only benefit me more recovery wise.  Plus, a co-worker and I are doing the Run-or-Dye 5k in a little over a month (I need to get my butt in gear).  I was on a roll for a while getting out a few times a week running or walking but the air quality in the city has sucked for the while due to multiple forest fires in BC, Northern Canada and here in Alberta. Needless to say the sinuses don’t appreciate the abuse so I won’t be enjoying the outside when I go for my next workout until that clears up and until I have more energy and can eat more again.

We all need to remember to be good to ourselves, eat healthy, exercise and stress less about yesterday and tomorrow; embrace today and reach for your goals!

 

 

 

 

Hope

The support that I see mounting around this group that has CDH1 is phenomenal.  Everyone is so very supportive of each other and it’s good to hear everyone’s experiences with Doctors and health facilities and their recoveries.

It’s nice to hear about the trials and tribulations of the recovery and what I could possibly expect.

My fourth endoscopy is in a month, I see many people getting their first and a malignancy is found. I feel for each one of these people that not only have they just found out about their genetic mutation that they right away have to jump into getting their stomach removed.

I don’t know if it’s normal or not but waking up in the middle of the procedure thinking that my esophagus is going to be ripped out is excruciating. Slowly waking up hearing the doctor, getting panicky and falling back in to la-la land. It’s always an adventure, but at least I get 2 whole days off work and I am taking control of my health.  You’ve gotta see the bright side of things every day. Live one day at a time and enjoy every minute of it.

My Auntie is the next in our family to get the surgery, it wasn’t supposed to be until the end of next month, but it was moved up to Monday next week.   It has been a while since we have gotten together as she doesn’t live in town. She and my Uncle came down this past weekend to have a big turkey supper before the big day. I realize I need to make a better effort to visit with family no matter how far you need to go.  They are so important and such an amazing support system.

Please find it in your heart to say a few good words for her while she undergoes surgery on Monday.

Hoping all of you out there are doing well if you are recovering, getting treatment or making tough decisions. Stay strong, empowered and keep your chin up!

Planning for the Future

Two years ago my family was presented with the news of a rare genetic mutation that causes stomach cancer. It was shortly after the passing of my maternal Grandma, she succumbed in her mid 80’s from complications of diffuse gastric cancer. I feel grateful that she was able to know her great granddaughter, whom she advised me would be a handful – and boy was she right!! I have read of many other people affected by this mutation that haven’t had the chance to get to know their grandparents and I feel so lucky. I know and cherish the fact that my Grandmother made an effect on her because it has been 2 years since her passing, and every other week she says she misses GG. It breaks my heart that she is gone.

With this mutation one has a 50/50 chance of passing on the mutation. You get 2 sets of genes one from each of your parents, the one from the mutation carrier can go rogue at any time. This mutation leads a female bearer to have up to an 83% chance of Diffuse Gastric Cancer by the time they are 80. This also increases the chances of Lobular Breast Cancer to roughly 40% to 60% life time risk as well. Scary odds when taking a look at the history of the mutation and the inability trace when cancer can show up. The percentage for males for Gastric Cancer is 67% by the age of 80.

Hereditary Diffuse Gastric Cancer (HDGC) is highly undetectable even with routine screening, and is commonly caught when the disease has progressed to stage IV. My mom received the news that she was a carrier in May 2012 and I in July that year as well. I felt that knowing was a no brainer so I can prepare myself and do what is needed to be here for a long time for my daughter who is so young. Before knowing my results I had that gut feeling (no pun intended) that I had the mutation and was fully prepared for the news.

Since January 2013 I have had 3 endoscopies and they have not located any sign of disease. My mom has had lobular breast cancer (before the mutation was known to our family) and went through surgery, chemo and radiation. She has also had her prophylactic gastrectomy this past October and they found nothing, I strongly believe this is due to the chemo that she had a few years back; though it’s not proven. I don’t know if I am playing with fire; but I feel at this time, it is the best option for my family and me to wait a bit.

The last little while I have thought more about surgery and when a good time for me is. I want to be healthy and I want to be strong before going into this, and I know that the younger I am (hopefully) the easier of a time I will have of healing. I think I have decided that surgery will follow in approximately a year. Having a prophylactic procedure there is a bit more involved and planning is required but that will come in time and in approximately 8 months I will need to contact the surgeon to say I am ready.

That’s a lot of time to prepare myself for the new journey I will be embarking on. In the mean time, I plan on keeping myself busy gardening, reading, crocheting, maybe playing ball and working of course.