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!

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

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.

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!