9 Months

Oh my goodness, so much I have missed over the last few months. My apologies for being so delinquent (but we will touch on that a bit later)

Time has gotten away from me way too quickly with my daughter in school, and the many activities that she’s in and trying to manage work, a social life and eating and sleeping (which I have been doing a lot of lately.) I have taught myself to knit, have done many puzzles and generally have been taking things rather easy physically, no circuit exercises yet but hopefully a routine will come into play soon.

The last few months there have been a few ups and downs, I got my first illness after surgery that lasted for three weeks, and it kicked my butt (it’s been going around and the average time it seems for someone to feel better is nearly a month.) I lost 4 pounds in the month of December, due too being sick and putting my back out.  I felt so terrible because it was all ears, nose and throat and it hurt to eat/drink. So between being drained from being sick, to my food intake not being sufficient really set me back on feeling better. It was a really long road to recovery.

Other then that my food intake has been better, I wasn’t being as good as I should have at tracking it. But there have been really good days at over 2000 calories and not so good days at 1200, the last few weeks have been great for food (granted I am sneaking some fast food in there but everything in moderation right?) I have been reaching my goal of 1800 calories every day. I now takes very little time to plan my meals and snacks as I am generally choosing better items.

My snacks would most often consist of some if not all of the below on a daily basis:

Hummus and Pita
2 servings of fresh fruit (bananas, grapes, melon, berries {when they don’t cost a small fortune})Nuts
Cheese and deli meat
Crackers
Peanut Butter (1 tbsp and usually with the crackers or on it’s own 🙂 )
Salsa or Bruschetta and Chips

My consistent choice of food has helped me gain back 3 of the 4 pounds I lost in December and has kept me stable at 107.5 pounds for the last few weeks. I am very  much looking forward to leveling out weight wise and getting back to the gym and being able to not worry too much about losing a bunch of weight with exercise.

I saw my surgeon 10 days ago, he is happy with my recover so far. I am healthy looking and am not gaunt. I am no longer having food stuck (which has only happened about 2-3 times since August) and I can eat mostly any thing and a good size serving of food at one time on a really good day!

Back in August after I started feeling better I started a Direct Selling business, to try and help myself meet more people, to learn more things about myself, and to get out there in general (try and have a social life of some sort.) I was doing alright with it to begin with and then I just started to overwhelm myself. I was setting too lofty goals for activities and not enough time for rest I was pushing myself to hard. Exhaustion was setting in, bed time has been really early lately and even after 8-10 hours of sleep feel like I could still sleep for days. I haven’t been able to sit down and commit to many goals or prior engagements as I feel a bit of depression tugging at me. I thought I had gotten the needed rest over the Christmas break, but I tried to get back into things and did it to myself again between boxing day and now. I realized I need to take a step back, I need to make more time for me, quiet time, relax and appreciate the moments time. Time for my family and especially time to recoup and get myself back in a good head space.

I have been over whelmed and it’s been building so much that I started having anxiety over it all, emotionally I have seen better days. It’s been a culmination of struggling to eat, and having the required energy to put a couple nutritious meals together; trying to do too much every day; not setting unrealistic goals for myself and trying to blow everything out of the water. It’s wanting to get back to the fast paced nature of what used to be, being sick for 3 weeks or having an unbearably sore back for 2 weeks and requiring medications and appointments to help fix it all. It’s the helplessness of it all, that I was losing control and I felt I had to keep going to try and salvage something out of it; but I shut down.

I am taking a step back from it all, getting back to the live one day at a time mentality I am finding is really important. I need to make the most of this and by putting too much on my plate too soon is a detriment to not only myself but my family too.  I can’t wait to feel where planning things a couple weeks in advance isn’t going to work because I don’t know how I will be feeling. It will come with time, maybe a little or maybe a lot but it will come. I think I will start meditating.

Patience is the only thing that I want to ingrain in you, give yourself the necessary time to level out, to assume a routine that you are comfortable with and that never go beyond that extra limitation of who you are and where your boundaries lie. It’s important that you take the time you need for yourself, and grow from it. It’s a struggle, emotionally, physically and psychologically and it will take time. Love yourself, let the caregivers/family/friends around you love you and enjoy every day. This is no less than a learning experience for all of you, patience will help you overcome any challenge!

One day at a time, just one! (For now)

From my family yo yours wishing you a Happy New Year, and may 2016 bring you health, love and happiness!

16 Weeks Post Op

I am still amazed at how quick the time has gone by since surgery, but I really should know better as having a child makes each day go by even quicker, and getting older has shown that as well. It has been a difficult couple of months back at work and trying to assume some normalcy to life; it has not been easy though I am making slow progress through my recovery.

The last month I went back to full time hours at work and it’s been difficult to adjust still to the eating because my schedule is so erratic each day. I never know when my breaks are going to be and what task I am on each day, it makes it hard to set up a  schedule to eat. My caloric intake has been inconsistent as well, but better than I had imagined it would be at this stage. I am happy to report that my barium swallow came back normal, I will not need any dilations or further exams and don’t need to see my surgeon for three months. It has been roughly a year since my last one and I am very thankful to not have to have an endoscopy again in the foreseeable future.

I was hopeful that the redness in my scar would have reduced a bit and that it would have decreased in width as well, but with time I am sure that it will calm down. I need to remind myself that it’s only been three months and that I need to calm down as well. I have started to take time in the evenings after my daughter goes to sleep to do very little physically and to take time for me. I am starting to stock pile some crocheted items and I have started to teach myself how to knit as well and am looking forward to others enjoying the things I make.

My weight is still dropping off, but I can stabilize for 1-2 weeks and then all of a sudden an average of 1.5 lbs disappear off the scale. I wonder when it will stop but I know that I can expect around 10 lbs more to be lost with my 30% totaling in at approximately 40-45 lbs. I am comfortable in my mind with how I am, and how I look, yet with the sudden loss of weight I know that it can bring on mixed feelings and self image issues. I know that my body will change after all is said and done and my weight has finally settled and I start gaining (minimally of course) I will feel different. I have felt ribs shift, and skin loosen and I will be glad when I can start back at the gym to tone and put on some muscle.

Earlier this week I fell down some wooden stairs to my basement, I cracked my lower spine and my left shoulder in the tumble. I probably should have taken a day off work to recoup but have irritated it, now another thing to let heal. I already felt gimped a bit with the aches and pains of the inadequate abdominal muscles.

Well it’s one month until the children go back to school and life gets crazy again, hopefully I can keep up with Chloe and all the activities we have for her.

Hoping you have a wonderful remaining weeks of summer! All the best to you!

3 Months Post Op (A couple Weeks Late Posting)

I just want to say that I cannot believe that 3 months has passed already.  It has absolutely flown by, and I am so glad of the positive improvements that I have been seeing over the last few weeks, though I have had some setbacks.

Monday four weeks ago I sure as heck didn’t plan on spending the 8 hours at the Hospital. It all started Saturday evening coming home from a bachelorette party, not feeling so great already and I start sneezing… Nearly 10 times and I am still having an issues. It hurts throughout my belly near the incision to begin with, on the last one I hear a pop in the left upper side of my belly. I thought the pain would go away like it had before, however it progressively gets worse into Monday where I was in so much pain I was crying. So, sitting in the waiting room for that long not being allowed to eat or drink was very difficult. For someone without a stomach waiting is not ideal. I started to get a headache and feel extra weak! At the end of it, I found out it was strained muscles. I spent the next week resting at home. I was also told I need to start some ab exercises to build on my core muscles.

The following week I started at full weeks of work. I can say that going to back to work full time has been extremely hard.  I have struggled with eating enough and with having enough energy at the end of the day to accomplish the tasks I need to and take care of my child and I. Eating has been a struggle as I work in a call centre and I am on the phone for most of the day, and it’s highly inappropriate to eat while on the phone, which means I am taking “personal time” which I am thankful that my employer isn’t harping on me about. It’s also hard when one is having a bad eating day and everything I eat bugs me. The work environment I am in isn’t ideal for obtaining a steady routine.

The last 5 weeks have been interesting I have had some losses but I feel more wins.

I can now eat bread at no more than one slice at a time.
I haven’t been retching as much as before (I have my bad days where food doesn’t want to stay down but they are less frequent than they were at the beginning.)
My B12 levels are stable with the sub lingual dose of 1000 units per day. (Yay for no shots!!)
I have recently eaten a whole vegetarian samosa, a mini Crunch ice cream bar, and had a bit of white wine.
I have been able to do more lengthy walks without having weight loss.
I feel so much more comfortable in my own skin now, a lot more confidence.
I had enough stamina to go to a rock concert (and the base and vibration feels a lot different in the belly than it did before.)

Unfortunately my hair continues to fall out at an alarming rate; I am getting more blood work to hopefully resolve why I can’t use a brush or it would be full by the time I am done)
I am extremely sensitive to sugar natural or refined and require a half an hour rest to get my body back to normal if I am having a bad episode.
As a precaution (and it was ordered in early June) I am having a barium swallow this week (I am not at all looking forward to this but I need to take care of myself and if there are issues they will be able to sort me out.)
My energy levels after a full day of work is terrible, I don’t have it in me to do the household chores or even cook without having at least an hour rest to regain my strength.
To name just a few…

My scar is still raised and very red, still itchy and in a little pain some times if I bend or twist in the wrong way but I go see my surgeon again in a couple weeks so maybe he can advise if I need to be doing something other then using Vitamin E oils and massage on it.

I have had many people ask about the surgery and such, and I tell them about weight loss and they always say “I should get that done!” My automatic response: This is nothing that you want to go through, the side effects, the eating issues, and the mental struggle to change the way you do things because you don’t have a choice is very challenging. The seem to (hopefully) understand that this wasn’t to lose weight or anything it’s to save me from getting stomach cancer.

The last three weeks have been rough emotionally and physically, I am currently acting as a single parent, and the struggles of being the only one to make sure the house is clean, the lawn is mowed and grocery shopping and cooking are done has been an extra strain on us. We are trying to work things out and are currently taking it day by day; and thankfully my parents have been amazing support for my daughter and I.

But here’s to hoping for easier weeks and no issues found in the barium swallow test. I am just looking forward to long weekends and days off over the next 4 weeks to try and reduce my stress levels.

Well bye for now,
Nicole

7 Weeks Post Op

Today we are sitting at 8 weeks post op, and each week brings new food and new challenges.

I have now been on solid food for four weeks. Trying to find different things to eat so I don’t get sick of the usual fare is challenging. I have been able to increase my calories to about 1300-1500 and it was getting easier to add to that each week.I am finding foods that are easier to eat and high in protein and am trying to stick to those, but I know I haven’t been eating enough vegetables the past little bit.

My original return to work plan was 4 hours a day for 2 weeks starting on May 28 and then full time there after. I have been absolutely wiped every day; and trying to conserve energy and not push myself too much as I am afraid of losing more weight rapidly, I had also been on solid food for what would only be two weeks at that point. I had my return to work pushed back one week to allow myself some more time to learn the foods and get into the groove of eating on a schedule and finding what gives me the most sustainable energy.

Day one back to work was pretty tough; I was exhausted after the first hour of being there but I stuck it out for another hour and a half but needed to go home to nap.  My short term disability worker and I made a decision to cut the hours back and make this return slower. So we dropped my start to 2 hours for the first full week and add 2 hours each week thereafter. Well, week one is done and the energy level took a hit. I found it very difficult to go back to work because I don’t have to opportunity to stuff my face full of food all day long to continue to get the same amount of calories I was when I was home. I have been napping as well (which I wasn’t doing at all in that last week at home much) which has thrown off my eating too. Mentally I know I am struggling to get back to my old productivity level, I know it takes time but it is definitely a bit frustrating. I am constantly trying to remind myself to be patient and not push myself too hard to quickly.

I also saw my surgeon on June 5 as required by my short term disability worker, to have the assessment completed and an update made to my return to work. 100 questions later I had a new work plan and am being scheduled for a barium swallow test. Which I am super sad about as I didn’t feel that the retching was that bad because I am still learning and trying to pace myself.  Fortunately (or unfortunately I am not sure yet) my appointment is on July 23.

Overall though I feel alright, just tired constantly. I still have some incision tenderness and it’s widened and red but I am putting the vitamin E on it and hoping that helps a bit with some consistent use.  But I am not super worried it’s a wicked scar, that shows that those of us who have them are warriors! I am also finding that eating is becoming a huge chore, and that I am really going to need to meal plan and stick with it like never before so I ensure I get enough protein and other nutrients. So far I have lost about 21lbs and am now feeling that I should have done that much sooner, it was just a perk of the peace of mind I now have. I haven’t had to go shopping because I was a bit of a hoarder and had kept some of my pre-baby clothes that fit again. Just picture me jumping for joy!

I have been trying to have some quiet, meditative time lately as I really was struggling with the thought of going back to work so soon with some of the troubles I have been having. Last week I finished a beautiful Thomas Kincade light puzzle (of which I am missing a piece, but I think our new cat stole it so it’s bound to be around here somewhere,) this week I decided to go on youtube and finally teach myself to knit and indulged and started playing a video game. Other then that the last few weeks have been about resting, eating and increasing my activity bit by bit by going for short walks and doing the grocery shopping and puttering around the house.

Today, I had my MRI and boy was it uncomfortable. I had some concerns going into it, and it did get quite sore by the end of it. Thankfully the hospital where I had it done has an upgraded machine and it only takes about 25 minutes to complete. I am glad that it’s over for another year. Now just waiting for the results from that and gotta get some blood work to check the B12 and the sublingual intake to make sure it’s sufficient. Yay scanxiety for another week or two.

I am hopeful that in the next few weeks I won’t have any major issues eating and with energy levels. I know it’s a long, slow road and don’t rush it!

Almost 5 Weeks Post Op Update

I can’t believe it’s been nearly 5 weeks since surgery, how time flies.

Last Friday was a busy day I saw my family doctor to get a base line for my B12, and am starting to take the quick dissolve tablets today (Tuesday) as I just got my blood work done this afternoon. Here’s to hoping that I don’t have to revert to the shots and the absorption orally is sufficient to allow me to continue this. I also received my pathology report. Good news, they didn’t find any cancer cells…phew one less thing to worry about now!! Here’s me doing another happy dance! However in my stomach they did find small foci of intramucosal hemorrhage and erosion and occasional tiny foci of mucosal necrosis. At this point I would like to chalk it up to 5 endoscopies with multiple biopsies. But I will follow up with my Surgeon just for curiosities sake and report back once I know more…

Needless to say I am relieved. I know that I made the right decision and that I don’t have to worry about getting stomach cancer any more.

I received an unexpected call from the dietician on Friday as well; she was asking how things were going and I told her that my appointment with the surgeon was moved a week and that I was still on a full fluid diet (I also fessed up to sneaking a bit of solids because I was getting real tired of soups and pureed things.) She said she would call/page my surgeon to see what he thought and would call me back.  A half hour later I get great news that I can start eating solids…I cried a little (as you can see I am an emotional person though I think anyone would be when they can start eating some normal food.) I ate chips the last couple days (I know bad calories but I am down to 128 lbs from 147 lbs so far) I had to eat something crunchy and I am really looking for different textures to satisfy the need of the palate.

Otherwise, I have been trying to fill my diet with easy to chew fish and chicken, well cooked veggies, puddings, yogurts, smoothies, still a bit on the soups because regular food freaks me out; but I have been able to eat peeled hot dogs and chicken apple sausages; bananas with peanut butter, pasta and scrambled eggs with cheese. It’s getting easier and I try something new each day.

I have no regrets about having the surgery, don’t get me wrong I have moments when I am hugging the toilet retching for the second time in a day (like today) because I didn’t chew something enough or ate it too fast and I think what have I done. Though I quickly remind myself that this is a learning process and it will take time to do things right; don’t despair.

I have been having a hard time getting a good calorie count, especially on the full fluid diet but now eating solids the most I’ve been able to reach is 1100 so far. It’s a work in progress as I have to avoid bread as it gets stuck EVERY SINGLE TIME and will have to make an adjustment to be able to intake milk products so I am not calcium deficient.

It’s hard to get enough nutrients and feel energized, as the healing process it takes a lot out of you and I am still trying to pace myself and not get discouraged or over do any activity. I am still pretty tired often and waking up after a nap I find my entire body is pretty sore and takes a while to get straightened out again. Though doing some walking to get groceries or just a stroll makes my back sore, so I’ve booked a physio appointment for next week, and we will see how things improve from there to try and get some relief.

Overall, things get easier bit by bit, just don’t lose hope that things will get better. I know this is a long road at about 12 months to really get back to the way they used to be, but I am one month down and the skies are a little bit clearer and closed to riding the beautiful old school cruiser bike I got for Mother’s Day and I can’t wait to be able to ride it.

My Mom and Dad came over this past weekend and planted/weeded my garden for me. Thank goodness for them, Rob and Chloe, without their support I wouldn’t be able to do much of anything. They are my rocks and without them I don’t know what I would do! I am so thankful! And for all you lovely people and your kind words thanks to you as well! A great support group is important!

I hope you all have an amazing evening and until next time all the best!

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!

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

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.