SUGAR

Last Thursday marked 7 months since I had my total gastrectomy to avoid stomach cancer. Things are going well, but I must be getting more gutsy with my sugars.

We went out to eat at Pizza Ranch for lunch 2 weeks ago and I, of course, ate more than I should have and was uncomfortable, BUT...I, also, attempted TWO slices of dessert pizza!!!! Well, for about a half hour after lunch I felt so dizzy and tipsy feeling (as of I was drinking alcohol). Then, on another occasion we had supper at the Tumbleweed for T-Bone Tuesday. I just had chicken strips and onion rings with a Coke to drink. I drank that whole darn coke and wow...I felt like complete crap! This time, I felt drunk as a skunk from the sugar!!! I LITERALLY could not drive home as it was not safe. IF I have soda pop, I'll usually have diet, but I had a headache that evening so I thought I'd have a REAL coke not realizing how much sugar was in a can of coke.....39g!!! I am supposed to limit myself to no more than 20g of sugar per meal! No wonder I felt the way I did!!!

 So, going forward after those two awful drunk feeling experiences from having sugar....NOT alcohol, I'll be watching my sugars more. ;)

MY AUNT-HOSPTIAL VISIT-FAMILY & TESTING

Today is two weeks since my Aunt Vera had her total gastrectomy.

 Surgery went great!  She was in a LOT of pain right after surgery, but by that evening they were able to figure out her pain management and nausea.  She was quite nauseous in the hospital, but since leaving the hospital she’s been great.  Very little pain, if any, and no nauseousness.  Now, she is just trying to figure out the eating and drinking bit.  She said it’s hard to get in as much fluid as the doctors would like, but she’s doing her best.  Also, she HATES when food or pills get stuck (Amen sister!).  I can honestly say I haven’t gotten anything stuck in quite a few months….I think I’ve figured out when I need to chew extra and that helps a lot!  She has her appointment with her primary doctor today and I only expect to hear good news!

 While at the hospital, I was able to go and visit one of the nurses I had while I was in for my total gastrectomy.  It was really awesome seeing her and although I surely didn’t expect her to remember me, she did.  I did have to tell her about what I had done and when, but then she completely remembered.  I was hoping to see two of my other nurses, but our schedules conflicted so I didn’t get to see them, but I did leave a card for each of them thanking them for all they did for me while in the hospital.  Mayo Clinic-St Mary’s Hospital surely has some of the sweetest nurses.  Also, I was able to see and talk with Dr. Kendrick when he came in to see how my aunt was doing.  He is SUCH a nice guy…AND amazing surgeon. I thanked him up and down for being a great surgeon and, also, had a card for him to read later.  I just wanted him to know how thankful I am for him.  Although, I never had cancer…in a sense, he still saved my life and was so kind to myself AND aunt and for that I’ll never be able to repay him.  I, also, told him that I’ve sent quite a few people his way, so hopefully he’s not sick of doing TG’s, yet.  He said he loves it, so no big deal.  The best referrals come from the patients themselves and I would refer ANYONE to him….ANY day!

 Since my aunt’s surgery, I have talked with my sister and few of my cousins.  My sister is looking into her insurance and talking with her primary doctor soon to do the genetic testing.  I know IF she tests positive, she will do the surgery, but will wait until she’s all done have kids to do so.  A few of my cousins are wanting to do the testing, also, and 3 of them will probably do it together (they’re siblings) after the one has baby #2.  I reached out to another cousin who had cleft palate (there is some research linking cleft palate to the CDH-1 mutation) and she now, too, is very interested and I pretty much had to start from the beginning and give her the low down.  I am SO glad that my family is willing to be preventative and is doing the testing!!!  I think seeing how well I’m doing helps reassure them….you really CAN live without a stomach!

THOUGHTS/PRAYERS/GOOD JU-JU REQUESTED

THOUGHTS/PRAYERS/GOOD JU-JU REQUESTED....

I haven't talked a whole lot on the chances of others in my family having/getting this CDH-1 mutation, but now is the time to so.

Because I tested positive for the CDH-1 mutation, I know I got it from my mom who most likely got it from her dad. Because of this, we know my mom's siblings have a 50% chance of this genetic mutation, also. If any of them test positive, their children will have a 50% chance of the mutation- just like my little Miss Paige has a 50% chance of this mutation because of how it gets passed down. If anyone ever tests negative for the mutation, then they and their kids, grandkids, etc are in the clear. It never skips a generation.

With that being said, my Aunt Vera (my mom's sister) had the genetic testing done back in May. It came back that she tested positive for the CDH-1 mutation. It's taken a lot of processing, weighing options, research, and meeting with doctors, but she came to the brave decision of choosing to have her stomach removed, also. She knows this isn't an easy option, but she feels it's the right one so that she can be around for her family.

This Wednesday, my Aunt will undergo a total gastrectomy done by the AMAZING Dr. Kendrick at Mayo Clinic-St. Mary's Hospital in Rochester, MN. I'm asking for some big-huge thoughts, prayers, good ju-ju, or anything else you can send her way before, during, and after this procedure!!!

She's tougher than she thinks she is and has some great support. She, also, has the same amazing team I did at Mayo, so I know she's in the best hands!!! However, extra thoughts sent her way would mean the world to me!!!

SIX MONTHS POST-TG!!!

SIX MONTHS!!!!!

TODAY is SIX MONTHS since I had my ENTIRE stomach removed to avoid that 83% chance of getting stomach cancer….the same stomach cancer that killed my mom and grandpa.

So, how do I feel SIX months post-TG (total gastrectomy)?  AMAZING!!!  I can hardly believe it’s been six months….it feels like WAY longer than that and that must be a good thing that I haven’t had a TON of complications that have made this process creep by.

What have I learned??

I’ve learned to keep up on my snacks and meals.  It’s almost just a habit, now, to pretty much just eat ALL…..DAY….LONG, but that’s ok and it doesn’t really bother me that much.  Just when I finish a snack, it seems like not long after I’m ready for another snack or meal.  In the beginning, I was very cautious as to what I would try, but within the last few months I’ve just been trying whatever comes to mind.  Steak, pop, etc.  I (KNOCK ON WOOD) haven’t had anything get stuck in a VERY long time and for that I’m very thankful.  I feel like I’ve figured out what needs to be chewed a little more than my new normal (meats, breads, veggies). 

I’ve learned that I cannot go without my digestive enzyme, yet, but am really hoping one day I can ditch it.  The beginning of January I stopped taking my Creon as it seemed like I would get a gut ache after each snack or meal.  It seemed to go pretty good for about 2 weeks or so and I thought MAYBE my body figured out how to absorb fat a little more.  NOPE….not the case….grease galore.  So, I’m back on my Creon, but mainly only take it with things I know are going to be super greasy or something that has quite a bit of fat (fast food, pizza, etc.).  I still hope that ONE DAY I can go off of taking these ESPECAILLY after finding out today that when I’m ready for a refill that my out of pocket will be $360!!!!  My jaw dropped….DANG!  Come on, body….figure this fat malabsorption out!!!  My pocketbook would rather put that $360 multiple times a year towards OTHER things….more FUN things!  I did NOT expect that.

I’ve learned that the week I’m due for my B-12 shot, I can definitely tell.  TODAY was the day I was due and I was MORE than ready to get this shot DONE!  I have been whooped ALL week long.  Paige helped me out with it and such a great little nurse.  I think I’m going to attempt some kind of B-12 vitamin either sublingually or maybe a tablet and see if that helps.  You can’t OD on B-12, so what will it hurt to try?

I’ve learned that although I feel FANTASTIC, I am only 6 months out from having this HUGE surgery and I’m still recovering.  I try to work out pretty often as I would REALLY love to regain my strength, but my muscle under my incision on the upper left still hurts like the dickens.  I have to be very careful what I choose to do as far as working out because that pain can knock me straight down and make me be completely done with my workout.  I have lost 85lbs as of today and since taking the digestive enzymes, this seems to have steadied out a little more which is good not to lose SO much SO quick.  *REMINDER- I did gain a LOT of extra weight before surgery ON PURPOSE…..I didn’t want a feeding tube and I TOTALLY took advantage of having my stomach and having an extra this or that when I could since I knew I’d never be able to eat like that again.

I’ve learned that this blog has been a huge healing agent for me.  When I first started this blog, I did it for 2 reasons.  1. To keep my family & friends up to date on this whole journey 2. To at least help ONE other person who is going through this craziness.  If I was able to do both of those, then I would feel like my purpose is complete.  I am happy to say that #1 is a given and have had such a huge amount of support that has really helped me get through all of this.  I’m extra happy to say that #2 has definitely been accomplished, also.  I am so happy that I’ve had others on this crazy little ride comfortable enough to reach out to me and ask questions they have in mind or needing just a little encouragement.  I know when I was going through this journey, reading others blogs is what helped me the absolute most.  The doctors can only tell you so much, but hearing it straight from someone on the same path helped me to have a heads up of all to come.  I was hoping I could be that help that I found for someone!  I have had quite a few people reach out to me and I hope that I have helped them just as much as reading blogs helped me!

Overall, SIX MONTHS post-TG and I feel great!  I’m definitely further along in my recovery than I expected to be and for that I am SO thankful and SO blessed.  The BEST part about this whole journey is that I will NEVER have to deal with the same awful cancer that took my mom and grandpa.  I don’t wish that on anyone and I’m so happy that I will have a much better chance at being able to stick around for Sean and to watch Paige grow and be there for all of her accomplishments.  I’m one lucky girl!

I’ve said it before and I’ll say it again…..Is it really elective surgery if the alternative is cancer? 

CROSS THE STREET OR TAKE THE BRIDGE??

If you are standing at a crosswalk and someone tells you, "If you cross this street, you have an 83% chance of getting hit AND if you do get hit, you only have a 4% chance of survival." would you still cross that street when there's a bridge just down a little ways that guarantees you won't get hit if you take that??

Those are the odds that were against me with this CDH-1 mutation and with my chances of getting hereditary diffuse gastric cancer. MOST cancers are NOT genetic.......this one is!! There's nothing special I could have done to avoid it. When and if the trigger hit it, I would have gotten this cancer...the same cancer that killed my mom and grandpa. The same cancer that left my sister and I orphans at age 19 years old and 14 years old. The same cancer that made my mom feel like she got hit by a bus...projectile vomiting, constantly feeling like bugs were crawling all over her from the chemo, always sleeping from the treatments, gained a drop foot which would make her trip over her own foot from the treatment if she didn't wear a special foot brace....a cancer that made us value quality of life vs quantity after she only lived about a year trying to fight this beast.

I feel this is one of the closest analogies I can come up with. Now, you tell me....what would you choose? Cross the street or take the bridge?

I'm glad I took the bridge and had this total gastrectomy!!! Some days are harder than others, but for the most part....I am doing fabulous!!! I never expected to be where I'm at today...feeling as great as I am, eating pretty much whatever I want just in smaller portions, and working out. It has been almost 6 months and not ONCE have I regretted my decision. This is one of the BEST decisions of my life.....to guarantee I will NOT get hereditary diffuse gastric cancer so I can be around for Sean and Paige.

Heather-1 Stomach Cancer- 0

BUFFET

While out to eat at lunch today....

Me, "Everyone else is having the buffet, but I'll eat off the menu."
Waitress, "Just so you know there's about a 40 minute wait for food ordered that way."
Me, "I don't suppose you would let me do the kids buffet price, would you?"...
Waitress, "Well, do you have a medical condition that you would need to?"
Me, "Ya...I don't have a stomach....literally."
Waitress, "Yep, that will work!"

I hate these awkward conversations, but glad I've never had an issue ordering off the kids menu or getting the kids buffet price!

WORK OUT

5 months and couple days post-total gastrectomy, Paige and I KILLED this Kick Boxing workout and 8 Minute Abs!!! I never thought 5 months ago after having my entire stomach removed that I'd be working out like I did!! I wasn't able to do all the 8 Minute Ab work outs due to one of my incisions hurting quite a bit, but I did what I could. Paige, on the other hand, KILLED the Kick Boxing, but had to stop half way for a treat! Lol I'm so happy to be where I'm at in my recovery, but cannot WAIT for my strength to be back!!!!