5 Months Post Op

I am 5 months today post op. The last 5 months have been the shortest and longest at the same time and they have not been without their struggles.

I have been feeling much better in regards to being able to eat without having food stuck and having to go to the bathroom at every meal. That has been such a relief. I have not been eating as much as I should be due to work limitations and I have had some taste bud issues over the last week or so and everything I eat tastes gross. I am trying out some new things to eat on a regular basis like chicken salad on crackers, new protein shake ideas. Right now I am not doing my self any favors. It’s been a lot better than it was and I have been trying many new foods to increase what I am able to eat and hopefully gain a few new options. I know that I need to do better, I am trying but there are days where I am struggling with everyday life and that doesn’t help at all either as I don’t get close to my calorie requirement of 1800 each day on the bad days. I find I am extremely tired physically and emotionally from work in the evening and don’t have to energy to make lunches and end up not bringing enough to work. I am down a total of 32.5 lbs so far, which is about 22% of my original body weight and still due to lose about 12 more lbs.

My vitamin and mineral levels so far have held stable and the b12 sublingual tablets are working well. Happy dance for no shots!

We are trying to live each day as there are not many left enjoy each moment and make the most of it. Trips out to the Rocky Mountains to hike the trails and see the beautiful sights. This winter will probably not allow me to get back out on the ski hill but there are other activities that I will be looking forward to doing like skating and maybe a hike during the warm chinooks we get so frequently.

Over the last 5 months I have realized many things; I have not been treating myself very well, I am not making the most of my life, I need to branch out, be happy and do more for myself. I need to take chances with life and that is just what I plan on doing. This process has enlightened me and it has given me that sense of morality that I previously hadn’t discovered. Thankful is not enough to explain how I feel about everything that has transpired over the last two and a half years.

I wish you many days of happiness, health, love and laughter!

Tomorrow A New Chapter Begins

Well tomorrow is the day, I will be admitted at 6:00 am to have my surgery completed and start this new chapter of life.

Today was a difficult day, but made so much better by my lovely co-workers.  They made me a geeky basket including a Tardis blanket and pillow, the Harry Potter movies, puzzles and activities and a wonderful cake as well. It was quite touching and their support is so amazing, my day wouldn’t have been as great without them.

I had my last junk foody meal today – a burger and fries, needless to say I got my fill of the foods I wanted to eat over the last couple weeks.

But I’ve been a bit anxious and was up at 3:30 this morning, it’s bed time now as we need to be up at about 4:45 to be out of the house on time.  Good thing traffic won’t be so bad first thing in the morning.

I want to thank each and everyone of you for your support over the last few months, I greatly appreciate it! May you all have a wonderful weekend and I will post as soon as I am out of my morphine fog.

Nicole

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

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.