HEART-BREAKING!!!

My heart is breaking for a fellow CDH-1 mutated momma. She is 27 years old and lives over seas. She tested positive and has been doing her endoscopies every 6 months until she's done having babies. She decided after babies she will have her stomach removed (you can still have babies after surgery, it's just more tricky).

Apparently, they still do endoscopies when you are pregnant overseas and guess what? They found stomach cancer! They said they would follow back up with her... in a couple weeks and do another endoscopy and see if it had spread. If not, they would plan to take baby by c-section at 37 weeks and within that same week, remove her stomach.

She had her follow-up and the cancer spread (remember how aggressive I said stomach cancer is??). They plan to take baby by c- section at 26 weeks which is pretty quick here and immediately remove her stomach.

My heart aches for this soon to be momma of 3. At 27 years old, I cannot even fathom the thoughts rolling through her head and the pain in her heart right now. Please send an extra thought or prayer if you can!!!

This brought tears to my eyes this morning reading her update. They are not kidding around with this nasty cancer and mutated gene and a lot of mommas will, after testing positive, try to wait until after babies to have their stomach removed. You just do NOT know what is in store for you in life and it's so risky with this mutated gene and her story reminds us of this.

12 YEARS AGO

12 years yesterday my mom became our angel in heaven instead of on earth.  Every year, I think it will get better/easier and that's just not the case.  This year is especially hard...not sure if it stems from me getting older and realizing more or the fact that I had this HUGE surgery to remove my entire stomach to prevent me from getting the same cancer that took my mom from us and made her suffer an unbelievable amount....or maybe a little of both.

 

Oh how I wish she would have had the same option as me.  I KNOW, without a doubt, she would have had this surgery, also, if she had that choice.  Also, at 31 years old and 12 years later, I still want and need my mom more than ever!!!  I still have moments where I want to call and tell her things, moments where I have a quick question for her, moments I could use a great big hug from my mom.  Cherish those moments with the ones you love and never take them for granted. As much as it hurts to have her gone, I need to remember all of the great moments we had together and if wasn't for her going through what she did, I never would be where I'm at today....living without my stomach and without the extremely high chance of getting diffuse gastric cancer.  I am thankful for that part, at least!!!!

 

 

RESULTS OF MY FAT MALABSORPTION

I mailed my little present back to Mayo Monday.  FedEx picked it up a little after 4pm. The VERY next day at 1:30pm, I got a call from my doctor at Mayo and I was a little worried as it hadn't even been 24 hours since it was picked up. First thing I thought was, "Oh crap! (literally) I bet the box got damaged and there's a huge mess for someone to clean up AND I realllllllly do not want to have to redo this test."

I got a chance to listen to my voicemail and she said something to this effect, "Hi Heather! It's Sheila. Just calling to let you know we got your present and processed it. You poor girl....you must be miserable! A normal screening would be anywhere from 2-7 and yours is at a 54. Please call me back when you get this as we really need to chat."

FIFTY-FOUR!!!!! And NORMAL is 2-7!!!

So, I called her back. I was wondering if there was a max number for starters and she said, "No, not really, but I will tell you that when I saw your number I about fell off my chair as it's the highest I've EVER seen. Next closest is 45. I know you like being an over-achiever, but this is a bit much." haha! Well, we chatted and I will now be going on creon which is a digestive enzyme to help out my poor little pancreas that just can't keep up. These are little tablets and I will have to take 3-5 during every meal and 2-3 during every snack. We will re-evaluate in a month, but she thinks this will kick the extra greasy stools, bloat, and tiredness. Biggest kicker- I will probably have to do this for life. Not the best of news, but expected....and if this is the only issue I've had/will have, I'll take it!!

DAY ONE OF FAT MALABSORPTION TEST

DAY 1 went....AWFUL! Just being honest here. I don't really feel like this 100g of fat/day thing is really for someone that doesn't have a stomach and for someone who has, since surgery, become lactose intolerant. I feel like I should be trying to take in fat grams however I can whether I'm eating or drinking. I haven't found much for drinks that have fat grams in it other than milk. So, it's been far from fun.

I won't go into great detail regarding the bathroom, but I will let you know that I changed the toilet paper roll TWICE yesterday and already ONCE this morning. Also, I'm not able to feel "full" anymore without a stomach, but I can tell that I am by the ache I have in my gut after eating. I'm trying to eat SO much and things I don't have very often just to get in my fat grams that I even ended up throwing-up yesterday morning. Along with the throwing-up came dizziness, becoming light headed, and really just wanting to sleep!

I just want to have my Lifewater or water, fruit cups, applesauce, green beans, and chicken like normal, again. I'm actually over having breaded chicken breasts, oreos, milk, chips, corn dogs, etc. NEVER would have thought I'd feel that way, but I feel like my appetite has changed quite a bit since surgery just knowing how my body reacts after having these things.

Today has been a LITTLE bit better. I've had ZERO milk, but I had a piece of peanut butter toast for breakfast (with 2tbsp of pb) and then about an hour later, I had 1 oz of cashews. I was gagging getting the last 3 cashews down and am just thankful it didn't come back up. I had M&M's about a half hour ago and am gearing up for lunch. I'm having 8 mini-corn dogs as that's 23 grams of fat!!!! However, I already feel nauseous just talking about it. Shortly thereafter, I will be napping....this kind of food makes me feel super lethargic, so I look forward to that...as long as I'm not awaken needing to use the bathroom, again, like I was yesterday!

Cheers to another day...or something like that. BRING ON MONDAY!!!!!!!! I've NEVER been so excited for a Monday in my WHOLE life! HAHA!

FAT MALABSORPTION TEST STARTS...TODAY!

TODAY I start my fat malabsorption test. This will consist of 6 days of eating a minimum of 100g of fat with the last 3 days collecting stool samples. From what I was told, the toilet and I will be really good friends by Sunday! Can't wait!!! (total sarcasm here)

In light of the situation, our mischievous elves are here to cheer me on.  Miss Paige got a kick out of this, also!!!

HOW AWESOME IS THIS?!?!?

HOW AWESOME IS THIS?!?!?

 

 

I am part of a group on facebook with other CDH-1 mutation carriers.  A gentleman by the name of Isaia Piho posted an amazing update that I just HAVE to share with you!!!  He, too, has had a total gastrectomy.  I am not attaching the pictures he posted and speaks of and as you read and as you read this, his daughter looks to be about 3 or 4 years old. (my daughter is almost 5 years old and has a 50% chance of this mutation...this gives me SO much hope!)

 

 

"Kia Ora everyone. Just thought as it's coming into the Christmas season that I would take the time to introduce you to an amazing man and a good friend - Professor Parry Guilford (tall man on the right - I'm just shy of 6'2). Parry is what you would call the world's leading expert on CDH1 mutations (in fact he discovered them). We are lucky here in Dunedin to have him and his team based here so we catch up with them regularly.

Parry keeps a picture of my daughter on his door as a reminder of a timeline promise they have given us. That is to have alternative to TG by time Tiare-Joy is at the age she is due to be tested. Every 6 months we give them a new picture of our beautiful daughter for inspiration to him and his team. Truth be told is he and his team are inspirational to me.
Unfortunately our generation are too old for alternative therapies yet, however our visit last week to the university laboratory had Parry and his team revealing their latest breakthrough with us. They have successfully grown miniature stomachs which will allow them to "field test" medication all within the lab. It is early days for human clinical trials but it's hopeful news for our future generations. It may not sound like much but there is some genuine excitement here in the deep south
So from me and my family I wish you all a Merry Christmas and remember to stay positive and continue to support one another
Isaia"

MY STORY ON KFYR-TV

A little over a year ago I reached out to one of our local news stations about my little journey.  Of course, at that time I was on the other side of surgery...preparing for it, scaring myself silly, and not really knowing exactly how it was going to go for me.  I decided to reach out to the reporter who did my story then to see if he wanted to do a follow-up.  He agreed and below is the link to watch my story. You can feel free to watch my story AND/OR read the article.

Of course, during the interview I was so level-headed.  I knew exactly what I wanted to say and it went so good.  When I saw the report/video all put together, it put the feelers back out there for me and made me cry.  Things like this remind me EXACTLY why I decided the way I did!

http://www.kfyrtv.com/content/news/Bismarck-woman-has-no-stomach-for-cancer-403856116.html

PICTURES ARE WORTH A 1000 WORDS

We had our family photos taken about a month ago and our photographer was able to capture this picture which I LOVE!!!!

 

No Stomach for Cancer Bracelet

"She believed she could, so she did" Bracelet

Arrow Bracelet (God knows I've been pulled in multiple directions on this journey)

and Seahorse Bracelet (as they, too, do not have stomachs!)

ALL of these bracelets tell a story about this journey I've been on and I LOVE IT!

HAPPY THANKSGIVING

I came....and I conquered my first Thanksgiving without my stomach!!!

I even had one more small helping of green bean casserole, a half of a dinner roll, and a small scoop of banana dessert. WAY more than I should have and paid for it a little bit, but totally worth it!  Most people gain weight during Thanksgiving, but I lost 2 more pounds. HA!

Happy (late) Thanksgiving to all!!!! I have more to be thankful for this year than ever before!

THREE MONTHS POST TOTAL GASTRECTOMY

It has been THREE months TODAY since I had my total gastrectomy (complete removal of my entire stomach). It sure doesn't feel like three months....feels closer to 6 or 8 months and that's a good thing! I feel like I have recovered so well and so quick, it's amazing. Talking with my doctors at Mayo, they say I'm an A+ student. I can't take all the credit, though! Without my incredible team of doctors at Mayo and my primary doctor here, I don't think I'd be doing this well! Plus, having the HUGE amount of support I do, keeps me going!!!

I read SO many stories of people who have such a hard time after surgery...they get strictures and have to go back in and have their tube blown up with a balloon, people who are constantly getting food stuck, people who are constantly getting sick (whether vomiting or diarrhea), people who don't sleep well at night because of reflux, people who had to be off from work for 6 months (not weeks), people who need a j-tube (similar to a feeding tube), etc. I just sit back and think, "WOW...I am so lucky and so blessed for SO many reasons!"

The one thing that isn't weighing me down is the one and only complication I have had....fat malabsorption. It doesn't bother me, we are testing for it the 2nd week of December, and there's a quick easy fix.

Also, as weird as it may sound...I'm so thankful I gained extra-extra weight before surgery! I have lost 55lbs and had I not gained the extra-extra weight, I fear a j-tube would have been in my future and I am not one to be held back by a j-tube/feeding tube!

All in all, I feel SO good...mentally, emotionally, and physically (for the most part...that will come even more with time) and every day I wake up thinking about how blessed I am! Blessed to have the option to be preventative, blessed to wake up another day, blessed to have all the people I do in my life. I am one lucky lady!!!

DOUBLE MASTECTOMY or NOT?

Along with this CDH-1 mutation giving me an 83% chance of diffuse gastric cancer, it also gives me a 42% chance of lobular breast cancer.  (the same cancer my maternal grandmother had)

I had my mammogram and ultrasound yesterday afternoon.  All turned out well.  The lymph node that was enlarged at my MRI and we biopsied that came back as nothing is STILL enlarged, but doesn’t seem like it has grown at all.  We are just going to keep our eye on it since it hasn’t really changed.  I go back in May for my next MRI.

Just like with the stomach, I do have the option to do a prophylactic double mastectomy.  I’m just not sure I want to or am ready to go down that road.  I have a TON more research to do before I even decide.  If I choose to NOT do that, I always have the option of monitoring with the mammogram and MRI every 6 months.   I feel like every time I’m in the doctors office and this gets brought up, I become emotional.  I know mind wise, I am definitely not ready for this.  Maybe in time I will be just like I was with my stomach.  We will see!  I did get a ton of my questions answered which surely helped.

I asked about a preventative hormone blocking mediation which can reduce the risk of breast cancer.  My doctor said that there is something I could take to do this.  HOWEVER, because it is a hormone blocker, it would send me into menopause.  She wasn’t sure that at age 31, she wanted me to go that route just yet.  If I didn’t mind that piece of it, she said we could.  Nah…I think I’m good.

With stomach cancer, if I waited until/if I got it, I only had a 4% chance of survival.  So, I asked if I waited until/if I got breast cancer, what would my chance of survival be.  I didn’t get a definitive percentage, but was told that since I am being screened every 6 months, if they found something, they could act quickly and usually it would still be in the early stages just because of how often I would be in for screenings.  My doctor, also, stated that even if I have a double mastectomy, it doesn’t completely change my fate.  I would still have a 4% chance of breast cancer WITH the mastectomy if I ditched my nipples and a 5% chance if I did nipple sparing surgery.  So, it goes from 42% down to 5%ish…is that enough for me to do it when I can do screenings every 6 months?  That’s the question I need to think on.

Just like with our family’s type of stomach cancer, lobular breast cancer has signet ring cells.  So, I asked if I would be able to feel a lump or anything IF I ended up getting it since in the stomach it doesn’t form a mass.  She said unlike other breast cancer, this one forms linear and not necessarily mass like.  However, she said I would still be able to feel a lump.  At least I can be on top of it that way!

Last question I had was in regards to being seen by a breast doctor here in Bismarck or Mayo.  She said either would be fine and up to me.  If I decided to have nipple sparing surgery, she would for sure send me to Mayo as they are better at that kind of stuff there.  If not, I could surely do it here.  Knowing the experience I have had at Mayo and the AMAZING doctors that are down there, it’s a no brainer I’d go there.  I’m just not 100% sure WHAT I want to do.  I still have another 3 months before I can do any kind of surgery, anyway, due to me having to be 6 months post total gastrectomy before any other surgery can occur.  I doubt in the next 3 months I’ll have decided even, BUT…at least I got some REALLY good information yesterday for me to ponder!

MR. ROBERT YALE

So, I decided to binge and read Mr. Robert Yale's entire blog in one night. This would be the gentleman the Kidd Kraddick Morning Show granted the Christmas wish for the other day. Reading his blog made me incredibly sad, yet SO thankful given the options I had and chose. Here are some quotes from his blog that really moved me!!!

"Long-term dreams of seeing your young children grow up, of cherishing your beautiful wife into old age, of nurturing decades-old friendships, of achieving professional success and advancement, all of those evaporate. Instead, your priorities and dreams and goals become very near-term: what can I do today to show my children how much I love them? What can I do today to love my wife well? How can I reach out to a friend and encourage them today? What can I teach my students about life through this experience?"

"It has been tough to face the reality that the rest of my life will likely consist of chemo treatment after chemo treatment until the available treatments run out or stop working and the cancer kills me."

"We are not responsible for the length of our life, only its depth."

LARGE BOX

I got a LARGE box from Mayo on Thursday. My hubby asked if it was my stack of bills from them...lol. Nope, just my kit for testing for fat malabsorption!!! I guess I didn't expect THAT big of a box...DANG!

KIDD KRADDICK MORNING SHOW

I was listening to the Kidd Kraddick Morning Show earlier this week and they were granting Christmas wishes. The gentleman they had on was 35 years old and diagnosed with Stage 4 gastric cancer earlier this year. It broke my heart and brought tears to my eyes listening to him talk. He said he's in stage 4 so there's no surgery he can do and it's incurable. The only thing he can do to prolong his life is to always be on chemo. He will try one and when it stops working, switch... to another. When that stops working, switch to another and so on and so forth. NOTHING will ever cure him of this awful cancer. The morning show asked how his kids (4 and 2) and wife were handling it and he lost it. I couldn't help, but to cry along with him. The likelihood that he will last a year is VERY unlikely as stomach cancer is so aggressive (less than a 4% chance of survival if you get it). I feel so awful for this gentleman. At the same time, listening to him made me SO thankful for everything I have learned and that I was able to have the surgery I did so I will NEVER be in his shoes in regards to stomach cancer and I hope by being preventative, I will be around for a LONG time to watch Miss P grow, learn, and become an amazing young lady!!! My thoughts and prayers go out to him and his family during this extremely hard time!!!!

DAY MADE

***That moment when you go to the pharmacy to refill your Ursodiol so your gallbladder stays in check and doesn't freak out causing another surgery and you expect to pay OVER $100, again, and they say, "NO COPAY."***

***DAY MADE***

THE INHERITED BREAST AND OVARIAN CANCER STUDY

Along with the CDH-1 mutation giving patients an 83% chance of HDGC (hereditary diffuse gastric cancer), it also gives patients a 42% chance of lobular breast cancer.  For now, I have decided to do the screenings for this which include mammograms 1/yr and an MRI 1/yr with 6 months in between the two.  I have my next mammogram scheduled pretty quick here and will get a full break down of everything related to lobular breast cancer, again, since my mind was very much on the stomach piece of this when I had my first mammogram about a year ago.

Of course, as you guys know, I am ALL about more research!!!  I just got a letter from Mayo Clinic asking if I would participate in a research study called, "The Inherited Breast and Ovarian Cancer Study" due to my CDH-1 mutation.  This study is to help the research team understand how breast cancer is inherited through families, establish the risks of cancer for patients with mutated genes, and to figure out the best way to manage risks for breast cancer between the patient and provider.  There's no doubt that I will help out with this study, too!  This will be pretty easy....just have to complete a study questionnaire, provide a buccal/saliva sample, and provide permission to contact relatives in my family whose participation may help advance their understanding of breast and/or ovarian cancer.  As with every test I have been a part of, I just hope that the information I can provide will help them advance their knowledge on all of this!!!

THE CHOICE IS YOURS

PINK to PERIWINKLE

CAN'T WAIT! (only kidding)

I got a message back from the GI team down at Mayo regarding my grease blobs every time I have a bowel movement. They are thinking that I have fat malabsorption and would like me to test for it. In order to do this, I have to eat 100g of fat every day for 6 days and on the last 3 days, collect stool samples. To put this into perspective, a McDonald's cheeseburger has 12g of fat and a Big Mac has 28g of fat. My non-stomach already feels sick just thinking about it. My doc said it would be best to stay home all 6 days and make sure a toilet is near as we will, for sure, be best friends those 6 days. She will be mailing the test out. Can't wait! (TOTALLY being sarcastic here)

WORK-OUT

I have been pretty skeptical on working out just because small things like pushing push pins into the wall make my upper left abdomen hurt.  I've been told I'm still healing from this surgery, so I'm trying to take it slow even though I feel REALLY good!  I had decided I would attempt a low-key work out video today just to see how it would go.  INSTEAD, I ended up helping rake and clean up the yard.  THANK GOODNESS my mother-in-law kept Paige busy, Sean raked the majority of it, and my father-in-law and I made a KILLER team scooping up the leaves into bags, pulling weeds, and carrying the bags to the front of the house.  This yard work was WAY more than I thought about doing today, but I'm not paying for it...and am STILL feeling really good.  I'm thinking the low-key workout video may go a little better than I expected...maybe will have to try that in a few days!  Each day I heal a little more and can push myself a little harder.  I NEVER expected 2.5 months out from surgery that I'd be helping with this much yard work....in fact, I kinda figured there would be a chance that I could still be laid up quite a bit.  I am SO thankful for how well things are going and couldn't be happier!!!!!!

OH THE QUESTIONS OF A 4-YEAR-OLD

Miss Paige was just full of questions yesterday...here's how our conversation went...

"Mom, you sure do poop a lot now." lol (gee thanks Paige...lol)

 "I know...it's because I don't have a stomach." (I have gone over this with her with my plush stomach so she knows more so that it's an organ and not just the middle region of my body)

 "Why did the doctors take your stomach out and where did they put it? In the garbage?" haha! (let's hope it didn't just go into the garbage...but really WHERE does it go?? lol)

 "They took my stomach out so it wouldn't make me very sick. This way I can live for a long time. Grandma Darla's stomach made her very sick and that's why she's in heaven, but the doctors took mine out so I can be around for a very long time....like until I'm a really old grandma! And I'm not sure where they put my stomach, but probably not just in the garbage."

 She was good with this answer...at least for now!!!  

THOUGHTS, PRAYERS, GOOD JU-JU

Well, friends, I have a little request....if you could please send a few thoughts, prayers, good ju-ju, or whatever you got I would greatly appreciate it.  Not for me this time, but for a fellow CDH-1 mutation carrier and friend who is having her big surgery (complete gastrectomy) tomorrow!

She has had a lot of questions and I think she is truly prepared for this big ol' surgery and will do GREAT tomorrow, but a few extra thoughts, prayers, etc. never hurt anyone.  I look forward to hearing how well she is doing after surgery and hope for NOTHING that will set her back.  She's TOTALLY got this!!! :)

FIRST B-12 SHOT GIVEN BY ME!

I got to give myself my first B-12 shot on Friday!! Pretty easy, but I'm still a little uneasy on all the little steps that go into it since it's only once per month. I'm going to do it myself the next two months in my doctors office....once in November to make sure I got it and, again, in December because Paige is due for her shots before kindergarten and I'm hoping by me getting mine first and seeing how it's no big deal, that she will be less nervous for hers!!

FAT MALABSORPTION?

I am currently on a low fat diet for a week due to my bowel movements being a bit "different." Different being full of grease.  Literally POOLS of it when I do go....sometimes no stools and JUST grease.  So weird! My doctors are worried about fat malabsorption.  If this low-fat diet doesn't do the trick, I'll be doing a 72 hour stool sample and may need to take a digestive enzyme or some other med. I'm currently trying to just figure my new life out with little to no extra meds or things to do. I guess we will see.....

STOMACH CANCER GUIDE

I feel blessed to be an advocate for No Stomach forCancer.  You all know exactly how I feel about losing my stomach….it was a no brainer for me! 

The No Stomach for Cancer organization has been my go to for a LOT of information.  Their website helped answer a ton of questions I had and I was able to follow so many blogs posted on their site so I would know just what to expect before, during, and after surgery.  Besides their website, I have talked to several people from this organization who have been beyond helpful while on this journey.

No Stomach for Cancer partnered with the NationalComprehensive Cancer Network to come up with a first ever Patient Guide for Stomach Cancer.  I was asked by Jon Florin, the Executive Director for No Stomach for Cancer, if I could submit a patient quote to be published in this guide.  Feel free to visit the link attached and make sure you view page 70 for my quote! J  I couldn’t be more proud for all that NoStomach for Cancer has done for myself and others!

https://www.nccn.org/patients/guidelines/stomach/index.html#72

POSITIVE ATTITUDE

THEY SAY

Don't have more than 20g of sugar per meal they said....it will make you sick they said....
So, I tried it...and they are right :( BUT..that peanut butter cup ice cream bar was worth it!

Also, Friday night Sean and I had a date night. We went to Sickie's Garage. I decided to have a pulled pork sandwich with BBQ sauce and tater-tots. It was SO good, but the problem I have is that I don't know when I'm full. I think I need to portion out my food when I'm out to eat a little better and box what I KNOW I won't be able to finish right away because heaven forbid I stop when I'm supposed to as it's in sight and tastes so good! Sorry to Century High School as I used your parking lot to puke up what was too much. AND...TMI, throw-up is nothing like it used to be. Lots of white foam....SO weird!   I'm still in the learning phase and need to take note of these things going forward...especially with how miserable I was!

Besides those two instances, everything else seems to be going very well.  It seems as if I might have a slight case of dumping syndrome, but I absolutely know before I eat something if that's going to occur with how greasy or unhealthy it seems to be. 

Tuna and chicken go down REALLY well.  Bread not so much unless toasted as it gets stuck.  I'm really into Life Water as it has some flavor and water tastes dirty now and there's NO sugar and NO aspartame.  I was doing a lot of sugar-free lemonade, but then on days I didn't have it, I would have a headache and figured maybe that was coming from the aspartame.  Headaches have gone away and I'm glad I can get the Life Water in bulk at Sam's Club.  My energy seems to be back quite a bit, but simple little things like pushing a thumb tack into a wall causes abdominal pain with the muscles....the first 3 tacks went ok, but come the 4th I was aching.  I keep pushing it, but have to remember I'm not even 2 months out from surgery and that's probably a normal thing to feel!  Again, everyday is a learning lesson and probably will be for quite some time!

HAPPY PREVIVOR DAY!!!

Happy PREVIVOR day!!!

 

Is it really elective surgery if the alternative is cancer? In my opinion...NO! If you were given an 83% chance of stomach cancer with a 4% chance of survival if you get it because of a genetic mutation where your mom and grandpa both passed away of stomach cancer and you do NOTHING, you are crazy! Also, when your chances of cancer are genetic, "keeping yourself healthy" isn't really an option!!!

I think survivors of cancer are tough cookies and I have nothing, but respect for those people. However, I am PROUD to say I'm a PREVIVOR and although I'm living without my ENTIRE stomach, I wouldn't have it any other way! Having that 83% chance with a 4% chance of survival is too risky for me!!! It's been a change, but nothing I can't handle and actually way easier than I ever expected it would be.

So, to my fellow PREVIVORS....HAPPY PREVIVOR DAY!!! You are a ROCKSTAR and I think you are AMAZING for taking things into your own hands and for looking out for your family and friends! I am SO happy Sean and Paige will NEVER hear, "She has stomach cancer with only a 4% chance to beat it!"

 

FOOD GOT STUCK

Well, my egg and cheese breakfast burrito didn't go well today.  It hasn't gone well in the past, but it's never come back up.  It tastes SO good, is packed FULL of protein, and as long as I chew thoroughly, I have no problems.  BUT...the two times I have had it since surgery, it has gotten stuck just once each time.  I can usually tell the second I swallow if something is going to get stuck.  Today, I was extra careful with my chewing and didn't feel it was going to get stuck at all. Then, out of nowhere with only two bites left of my burrito, I felt a pain my chest.  I tapped my chest near my esophagus, walked around, breathed deep, but there was no hope.  Up it came.  DANGIT!  It's so different with food coming up now as there is no stomach acid to break it down or bile, so the way it looks as it goes down, is the exact way it looks coming up. (there's a plus...ha!)  Every time food has gotten stuck, I'm done with my meal after that.  Just too uncomfortable.  So, there's a first and not a good one.  Oh well!

AFLAC PAID!!!!!

FINALLY....Aflac has paid on my disability claim from being out for surgery.  The check is in the mail and this is a HUGE sigh of relief!!

I did call Aflac yesterday to find out if they needed anything else from me as I received an email from them.  They stated they received the clinical notes from my physicians office and they would forward them over while I was on the phone with them to be reviewed. The representative said I would hear from them by Tuesday with their results.  I was SHOCKED when the claim was approved and check mailed out today.  They probably got sick of hearing from me! haha

FOUR-YEAR-OLD QUESTIONS...

So, my four-year-old has been VERY into my incisions and scars on my belly.  She asked me last night, "Where's the cut mark from when the doctors took me out of your tummy?"  (Mind you, I did NOT have a c-section)  So, how DO you answer that question??  I told her that not all babies get cut out of mommy's tummies and she didn't.  "Well, how did they get me out, then?"  As funny as this is (and it was!!!), I had to tell her that I needed to think about how to explain this to her and I'd get back to her later on it.  I KNOW she won't give it up, either!  Any tips??? HAHA!

SIX WEEKS POST-OP

Today is SIX weeks since I had my WHOLE stomach removed to avoid the cancer that took my mom's and grandpa's lives.

I had my post-op appointment and first B-12 shot since getting out of the hospital.  I had my primary doctor do my post-op so I didn't have to drive all the way to Mayo (7 hours) for them to tell me in 15 minutes that all is well.  Dr. Kendrick was ok with this as long as I let them know if anything feels "off."  Post-op went well and things seem to be going perfect she said.  I was hoping to have this overwhelmingly large boost of energy after my B-12 shot...meh.  I don't feel like it made a HUGE change, but I think any extra energy is good.  I guess we will see as time goes on as my body is still healing and adjusting.  I am going to go in next month to make sure I can give the shot to myself correctly and then I'm on my own.  It doesn't seem too tricky, but I sure had a lot of questions that went with it like where do I get a sharps container, where do I get alcohol wipes for the B-12 bottle and my leg when I give it, etc.  All very valid questions before taking the leap on my own and going for it.

This last week, the only crazy thing I tried was a cheeseburger and it went well.  It might have been a little bit too much as when I stood up I had pain in my non-stomach, but it sat well!  I, also, learned that I cannot chug drinks when I feel thirsty.  It feels like it kind of gets stuck and then gets super gurgle-y. 

Yesterday was my first day back and work and it went GREAT! Now, I can REALLY figure out my new normal. I stayed for the WHOLE day and had NO issues, at all. Kept up on my snacks and fluid intake and all went well!!! Couldn't have asked for a better first day back!

Aflac is STILL not on my good list!  I finally had Dr. Kendrick's office reach out to them since they said they reached out (even though there was NO documentation of it) and never got a call back.  Nicki from Dr. Kendrick's office was VERY helpful.  She reached out to them and the code provided on the sheet was not a CPT code and that's what Aflac needed.  So, Nicki gave them the CPT code for "laparoscopic complete gastrectomy."  The representative said that CPT code and term is "too general" for them to cover my disability claim.  I don't think I'm being outrageous when I say that I think that CPT code and term is actually QUITE descriptive.  Nicki faxed over all of Dr. Kendrick's notes from surgery and she said the only line that will help them, she's thinking, says something to the affect of "surgery required and advised due to the high probability of cancer."  I'm nervous that's not going to do it, BUT...I'm giving them until the end of the week before I give them a call and bug them, again.  It's sad to say, though....I don't have a lot of faith and for that, it makes me EXTREMELY irritated...especially since I did SO much leg work before even signing up for the policy to make sure I would be covered while on leave.  I'm not sure I know of anyone who would want to pay premiums for over a year and still go almost 6 weeks without a paycheck.  I guess we will see what happens....

I'm still feeling awesome considering I'm 6 weeks out from surgery.  I still am in shock with how good I feel and how it seems as if I'm figuring out how things work for me pretty quickly!  I'm very happy.  If I would have known how good I would be feeling after surgery, I wouldn't have freaked myself out so much before.  However, each person is different and I have read so many blogs where people have many complications so it's clear why I was nervous besides the fact of it being such a huge surgery.  I'm going to keep on keepin' on and look forward to this wonderful life!

OFF TO WORK

Hi-Ho-Hi-Ho it's off to work I go!!! Hoping for a good day filled with lots of energy. I packed a ton of snacks, so hoping the day goes good !!!

Also, had my B-12 shot on Friday. I don't notice a whole lot of energy, yet, but I'm not terribly weak, either. Not doing anything extra for energy at this point. My doctor said everything is still new and adjusting. She said to give my body another month or two to see how it reacts. If it still seems as if I start getting more tired... towards B-12 shot time, we will talk about my options and probably run blood work to make sure it's the B-12 and not something else.

Still waiting on Aflac...they contacted my doctors office and my doctors office said they didn't. (flash back to me getting back onto Sean's insurance policy) Then, Saturday I got a letter in the mail requesting all the same papers already filled out, be filled out AGAIN with one extra form. I'm calling them today, AGAIN. So much for "we pay in as little as 4 days." Ya right!

SATURDAY NIGHT

Here's what my Saturday night consisted of...filling my med box.  Don't be jealous!  ;)

$42,481.86

Thank goodness for insurance as this is the GRAND TOTAL of my itemized bill from my complete gastrectomy including my hospital stay! Thankful that's not MY bill!

FOUR WEEKS POST-OP

Today is FOUR weeks since I had my WHOLE stomach removed due to the high chance of Hereditary Diffuse Gastric Cancer which took my moms life and most likely my grandfathers life.  Having an 83% chance of stomach cancer with a 4% chance of survival if I waited until/if I got it wasn't something I was willing to put my odds up against.  I can truly say I have not regretted my decision to do so once!

I am feeling really good, for the most part.  I'm having a hard time figuring out the nausea I have in the mornings (feels like morning sickness and I KNOW it's not that).  I've tried eating right away, waiting for awhile to eat, eating food, only having a protein shake, etc.  Nothing seems to be working.  So, I guess I'll just be dealing with that during my mornings.  I, also, haven't gained any extra energy this last week, but I do look forward to my B-12 shot this Friday in hopes it boosts my energy a little more.  I've been really careful about eating this last week and can't recall getting food stuck even once.  I've, also, increased my portion size a little bit which sometimes has been ok and other times, I stand up and realize I've eaten too much as I have an ache in my non-stomach and that's really the only way I can tell I've eaten too much.  I tried pop for the first time and expected it to burn going down which it did not, but it did leave my non-stomach quite gassy and bloated.  I, also, had chicken nuggets and fries as that was Paige's pick after her first day back at pre-school.  The chicken nuggets tasted nasty having to chew them as many times as I do and the fries were blah.  I think I had 2 nuggets, 4 fries, and then my apple slices since I ordered off the kids menu.  It's crazy that things taste so much differently that I expect them to....I guess they were right when they said my taste buds would probably change after surgery.  I don't think there was anything else real wild and crazy that I tried this last week.

Dr. Kendrick's team called me on Friday to see how everything was going since I'm not going in for a follow-up appointment.  They asked a ton of questions and said it sounds like everything is on the right track.  I should start getting more energy back after about 2 months post-surgery.  Also, the pain under my left breast still and swollenness isn't uncommon as that incision was a little bit bigger than the rest (and even so it's only like an inch and half) and they had to cut through quite a bit of muscle.  Plus, having my lungs right there doesn't help.  That should go away with time.  I have just been heating and icing it when it bothers me too much.  If I'm going to be getting a stricture (closure where my esophagus and small intestine meet which doesn't allow food to flow through properly), they usually see it after the 1 month mark, but not smoking (which I don't) or drinking through a straw should help, but I need to be aware of it.  The fever I have had off and on since surgery (not getting more than 100.5) is not uncommon as my body is trying to heal and at times may think there's an infection.  If it gets more than 100.5, then I need to call them ASAP.  I haven't had a fever for over a week I would say, though.

My main frustration this week is that Aflac still hasn't paid me for my disability leave, yet, and it's been FOUR weeks!  They have a few questions for the surgeon and have a call out to them is their excuse this time.  I thought Aflac was supposed to be rockin' when it comes to paying out claims and I swear to God, if they for some reason do not pay...I'm going to FREAK!  I waited over a year to have this surgery because of their pre-existing condition clause and have done everything they've asked.  I'll just cross my fingers and toes that this is the last step to their madness and they pay out!

So, everything seems to be on the up and up minus the Aflac insurance!  I go back to work next Monday and getting back into a routine will help as long as I bring enough snacks with to keep my body happy.  I think it's perfect that I get my B-12 shot Friday and start work Monday...hoping for a GREAT day with lots of energy.  (hey...a girl can wish...you just never know!!)

THREE WEEKS POST-OP

THREE WEEKS- today is THREE WEEKS since I had my complete gastrectomy.  I am feeling really good and honestly feel like I could go back to work, but because of my disability paperwork with Aflac being sent in already, Dr. Kendrick’s team told me to just hang tight and go back on the date they originally released me for.  So, my first day back at work will be Monday the 19^th.  I look forward to going back and having some normalcy in my life.  I think that will really help put things into perspective as to how life will be going forward.

One thing I really miss is having energy.  I get fatigued quickly.  Taking a shower, doing my hair, and makeup all at once is too much and I start to feel very weak.  Making supper is ok as long as I can take breaks to sit down.  I hate that I can’t run all kinds of errands at one time.  Two or three is usually about all I can do and depending on what they are and how much work they take, that sometimes can be too much.  I can’t lift anything more than a gallon of milk until next Tuesday, but I sure look forward to doing that, also.  All in due time.

I just started on solid foods last Tuesday and it seems as if that’s helped my weight loss to settle and not drop so much at once.  I’ve lost 25lbs so far and know there will be more to come, but not dropping it all so quickly will hopefully help my other organs to not go crazy.  I played it pretty safe for the most part, but I got a little gutsy with a few things AND I must say everything went very well (no dumping syndrome or spit-ups)!  I had a 2inx2in piece of pizza!!!!  I had a pickle (I was worried about the seeds, skin on the pickle, and acid)!!!!  I had ONE oreo!!!!  I had two Little Caesars breadsticks!!!  I feel like these are HUGE accomplishments!  Also, I don’t know why, but I’m surprised by how much I have to chew chicken in order for it to be broken down enough to go down…it’s a lot of work!

Over the last week, I have learned quite a bit about my new life.  I feel like I should bullet point the things I’ve learned…..here they are….

·         I don’t get hungry anymore without a stomach, but I can tell when it’s time to eat or it’s been too long when I start feeling nauseous.

·         I don’t get full anymore, either.  I can tell I’m getting full when I gurgle quite a bit, but have tried to be aware of how much I’m putting into my body so I don’t overdo it.

·         I have had food get stuck a couple times due to me not chewing as much as I should.  When food gets stuck, I get the hiccups like crazy.  Walking around and taking deep breaths help.   I, also, tap on my chest near my esophagus where I can feel the food is stuck and it hurts like heck, but I haven’t had any food come back up, thank goodness!  Taking a drink of water doesn’t help, either…just causes more pain.  The pain I’m talking of isn’t terrible, but it’s definitely uncomfortable!  I would say it usually lasts about 5 minutes on average.

·         I can’t go to bed and lay on my side immediately as I have pain.  Laying on my back for a few minutes and then rolling to my side works best.  Also, TMI…if I lay on my left side I usually have to get up and use the bathroom shortly thereafter.  I don’t know if that has something to do with all my organs shifting and laying on my new system and it pushes it out or what?

This is all a learning game and although I did a TON of research before surgery, each person is different and it’s all trial and error.  I learn something new each day and expect that to continue for a while, yet.  I’m still just floored as to how great I feel and am so thankful for that!

FOUR YEAR WEDDING ANNIVERSARY

Today is our four year wedding anniversary! Tonight will be my first night out to a restaurant and I'm curious to see how it goes. I don't know where we are going, yet, but I don't plan to get too adventurous. I'm just hoping that my new skills that have kicked in won't need to- I can tell when I've wait too long to eat as I get pretty nauseous and I can tell when I've eaten too much as my non-stomach gets very loud and gurgles quite a bit.

Today, also, is a big deal because it's a reminder of what my mom missed out on. Or maybe, I missed out on having her here. It was hard enough not having my dad there on my wedding day to walk me down the aisle, but it was equally as hard not having my mom there as she was my rock! I'm so glad that I have given myself that much more of a chance at being at Miss Paige's wedding one day....and not just wedding, but all those big milestones down the road! I'm just glad I was able to honor my mom in my bouquet that day and that my friend and photographer, Kristi, captured that beautiful picture of her on her wedding day to my dad. The picture was given to me along with the locket from one of her best friends, Beth. Along with that, the angel wings to remember my mom and dad and all 4 of my grandparents who had passed and star broach that belonged to my grandma. This is one of my favorite photos EVER!

 

CHEERS TO TWO WEEKS

Today is TWO WEEKS since I had my complete gastrectomy (complete removal of my entire stomach) so that I don’t have to worry about an 83% chance of stomach cancer along with 4% chance of survival if I were to have waited until/if I got it. TWO WEEKS and I feel SO good. The way I feel today is how I felt I’d feel SIX MONTHS from now. I expected to be sleeping constantly, just now getting off of pain meds, and I thought I’d be dealing with food getting stuck constantly and dumping syndrome. 
 

I take a nap every afternoon because who doesn’t love a good afternoon nap and it’s not like I have anything else to do. Ha! I haven’t been on pain meds since last week. As for food getting stuck/dumping syndrome, I just started on solid SOFT food today so time will tell.

I had a piece of bread with butter on it last night to see how it would go and it went great. Only downfall was my non-stomach was EXTREMELY loud going to bed last night while lying on my left side- no pain or discomfort, though. Once I switched to lying on my back, it was quiet and everyone could sleep peacefully. I just had a wedding/funeral sandwich for lunch (you know, the small little buns with butter and ham or turkey on it) which has been something I’ve been craving since surgery. (I may not be hungry, but cravings still come about now and then) That went very well, also! I had one case last Friday where food got stuck, but I knew exactly what I did to cause that. I knew it was time to eat and I took 3 big bites of applesauce at once time as I was trying to hurry. The new me has to eat VERY slow and chew VERY thoroughly. I’ve been making sure I’m eating slow and thorough since Friday and have had no issues. I’m taking this food bit very slow and I hope that does me some good.

I got to drive today for the first time since surgery. That was kind of exciting as it’s nice to know I don’t have to stay cooped up at home constantly! I, also, removed all of my steri-strips (two last ones today) and that feels good!

I realized after last Friday that I still have to take things somewhat slow. It’s great to get out and about and walk, but I’m really only TWO weeks out from surgery and still need to take it easy. One errand at a time is probably best for a little while, yet.

TWO WEEKS and here we are. I’m sure there will be uphill and downhill battles to come, but what I know is I couldn’t be happier with how things are going! I’m shocked and surprised, but beyond thankful at the same time. Cheers to TWO WEEKS!

OVER DID IT

I had a rough day, yesterday. Well, really I think it was the aftermath of pushing it too much the day before. Just too much walking and standing when my body needed to rest. Even two nights ago, before I went to bed I had to lay up right on a heating pad first, then once my back wasn't spasming, I could go to sleep.  I woke up feeling pretty good, but had run out of things I could eat here at home other than my protein shakes.  So, I had one of those hoping it would get me by to our trip to Wal-Mart.  I think adding MORE walking in yesterday at Wal-Mart probably didn’t help.  It’s not like I really hurt, but I just feel completely worn out and my back hurts (I suppose from the way I hold myself walking with everything shifting inside and with walking on concrete flooring everywhere we’ve been going).  So, we got home and I ate and rested on a heating pad.  After Paige had lunch, we decided to lay down for a snooze.  Well, I knew something was up because I was freezing, but nobody else was.  I couldn’t get a good nap due to me running a fever.  It seems pretty consistent that I haven’t had a “normal” temperature since getting home and it’s always a little higher than the 98.7 (not sure if it’s from things getting acclimated inside or what?). I’ve had a few times where I can tell I have a fever and check and it’s 100.something, but never over 100.5 which is when I would need to call into Dr. Kendrick’s team.  That was the case yesterday- 100.3 fever.  I decided to take a nice shower and that always seems to break it, but it’s just SO much work when I’m already feeling icky to get in the shower.  TMI, but I, also, don’t think that it helps that I haven’t had a really good bowel movement since we were staying in the motel in Mayo after surgery!  I was told I didn’t need to be on stool softeners if I wasn’t on any pain meds and haven’t been since Tuesday, but HAD to take some yesterday as I was starting to become a little miserable.

So far, granted the day is early, I’m doing pretty good.  I woke up THREE times in the middle of the night to try to use the bathroom because my belly and back were hurting and FINALLY I was able to have a bowel movement and I feel SO much better.  I already told Sean that I want to take it as easy as possible today.  I wouldn’t mind getting out for a walk down the block or something, but I think that’s going to be the extent of it.  I feel bad because Paige was very much looking forward to church today, but I just can’t do it….between getting myself and her ready, the walking, and the fact that communion is today and I can’t have it, yet, I don’t want to put myself in that situation.  So, here’s to a day of R&R and church next week!

VITAMINS/SUPPLEMENTS

I've had a couple people ask me about supplements that I will need to take due to having no stomach.

The only vitamin that you absolutely cannot get without a stomach is B-12. I will end up doing B-12 shots monthly. Eventually, I will do it on my own at home, but for the first few times, I'm going to go in to make sure I'm doing it right. You can tell you are in need of your shot when you start getting pretty lethargic. Besides that shot, everything else is oral. I have already started taking 2 Tums 2x/day, 1 Flinstone Vitamin 2x/day, and 1 Vitamin D-3 1x/day. It almost acts and feels like a meal! ha!

Due to the rapid weight loss, especially in the first 6 months, gallstones can and often occur. To prevent gallstones and having to lose my gallbladder, starting September 16th (one month post surgery), I'll be taking 1 Ursodiol 2x/day for 6 months. This med, even after insurance, is quite spendy, but looking at the bright side- not having another surgery and not having to meet my deductible and co-insurance, again if it happened in the new year, is worth it, I suppose!!!

THANKFUL

I read a Facebook post today from this woman in one of my stomach cancer groups that brought me to tears!  She said she was working on writing birthday cards for her children for however many years she could get through as she wasn't sure how much longer she would be around and she wanted to make sure they still got a card from her on their birthdays.  Wow!  That is one tough, yet considerate woman, while just waiting for "her time" to go.

How thankful am I?  I have SO many reasons to be thankful and I am SO thankful that I do not have to do that!  I will be honest, I was scared going into surgery.  I wrote a letter for Paige and Sean for after surgery just incase I didn't make it and hid it in my underwear drawer.  I cried when they took me back to prep me for surgery and I cried being wheeled into the operation room not knowing if I would wake up.  I KNEW I had a great doctor who has done this surgery hundreds of times, but what if he had an "off" day?  He is human and humans make mistakes.  I am just SO thankful to still be here, have the option to not have to write my daughter birthday cards to substitute when I'm gone due to stomach cancer, and I get to live life to the fullest...even if it a little different!  THANK YOU, God!  THANK YOU, God!  THANK YOU, God!!!!

On top of that, I am feeling GREAT today!  I haven't used anything, not even Tylenol, for pain.  Everything I have eaten/drinken today has gone well with no spit-ups or dumping syndrome.  I had a Premier Protein drink today which was new and went really well, applesauce, and potatoes (ha!).  I'm not sure what I'll plan for supper, yet, but we'll see when Sean and Paige get home.  I made an appointment with my primary doctor for Friday as that's when my steri-strips are to come off.  I'm nervous about it!!!  I shouldn't be, but I am.  The only one that concerns me is the one near/on my belly button, but I just want to make sure before I take them off that she agrees they should come off without my insides falling out.  haha!  Looking forward to a great evening and hopefully able to go SOMEWHERE to walk since it's crazy windy outside, again, and I do get winded easily.

ONE WEEK POST-SURGERY

Well, today is ONE week post surgery and to be honest, I cannot BELIEVE how good I'm feeling considering they removed my ENTIRE stomach!!!  The last time I took my oxycodone was Saturday and last time I took tramadol was Sunday.  I've been taking care of the pain with Tylenol and been resting the best I can.  I am SO thankful to Dr. Kendrick and his team for all they did and for always calling me back after my millions of questions!

Yesterday was my first day at home by myself.  It went really well, but was extremely hard to not want to do things around the house like laundry and un-pack.  When Sean and Paige got home, they had supper and I decided I needed a few items for my week of puree foods.  We went to the grocery store and I decided I would try to walk with the cart (it acted like a walker) and if it seemed like too much, I'd have Sean get a wheelchair or scooter.  We probably only had about 10 things to get and one was on the opposite side of the store so it made me a little nervous as I really didn't want to over-do-it.  I walked THE WHOLE TIME at the grocery store and it felt SO good.  I was worried about paying for it later, but nope...felt great the rest of the night!  That was a huge hurdle! 

I had a hard time last night finding a comfortable way to sleep as I'm really wanting to lay on either of my sides, but that causes pain and laying on my back and upright causes my tailbone to hurt.  It was a night NOT full of pain, but full of tossing and turning as nothing felt quite right.  I look forward to laying on my side...someway, somehow!

TODAY....TODAY I got to start on puree!!!!  I've had applesauce which was good, yogurt which burned a little going down, and mashed potatoes which were like HEAVEN!!!!!!  It looks a little windy outside now, but I think I'll try to take a stroll at least down the block and back tonight when Sean and Paige get home AND I might try something else new or just have more potatoes! haha.

Anyway, SO FAR SO GOOD and I'm shocked by that.  I'm shocked by what our bodies can do and I'm shocked I feel so good.  Last Tuesday evening, after surgery, I was asking myself why I did this to myself when there was so much pain and nothing wrong with my stomach to begin with.  I'm sure there will be more times like that to come over time, but looking back over the last week puts a huge reality check in place.  I know EXACTLY why I did this....so I never have to deal with the cancer that took my mom and grandpa's lives, so that my family never has to hear "she has stomach cancer," so my family never has to see me the way I saw my mom fight with all her might, so that I can be around to watch Paige grow, go to prom, graduate, get married, have kids, etc.- all things my mom had to miss with my sister and I.  THAT is why I did this and the way I'm feeling makes me SO thankful!

WHAT I HEAR WHEN I EAT

If you are curious as to what I hear each time I eat something, here it is!!! It seems louder with warm drinks vs. cold drinks. All I did was take a spoon full of chicken broth, laid my chest on my phone, and hit record. Enjoy! Haha

SO OVER THIS CLEAR LIQUID DIET

I am SO over this clear liquid diet!!!! Tuesday can't come soon enough to start puree...blah! I don't think I'll eat jello ever again in my life!!! 

I, also, cannot WAIT to use this little card and actually be able to EAT and CHEW, again. whether restaurants let me order off the kids menu or senior menu, I don't care....I just really look forward to this!

WE ARE HOME!!!!

Well, we got home last night and it was such a relief!!!  Sean dropped me off and then went to get little Miss Paige.  She was SO sweet and SO nervous when she got home.  At four-years-old, I'm sure it's hard to understand everything, but she is the best little nurse!

Before she got home, Paige was prepped to be gentle with me. She saw the bruise from the IV on my right arm and said, "Oooh. Ouch. That's not good. Let me see your other arm." My other arm isn't quite as bad since they took that IV out on Thursday. Then, she saw the bruises on my legs from the heparin shots and says, "Oh my gracious! This is not good!" I asked if she wanted to see my tummy, "No, not right now." I asked if she was scared because she surely looked it, "No, not too much." (haha...she was trying to be so tough) I asked her a few times throughout the night if she wanted to see my tummy and nope, she didn't want to and I didn't want to push her, either!  Well, I was just getting out of the shower and she walked in and saw my incisions.  I told her, "See they aren't so bad, huh?  Were you scared?"  Paige said "No, they're not too bad and ya, I was a little scared. Did they used to bleed?" (now she's right up at my belly looking at them as close as she can without touching) and I'm telling her about how they did bleed, but they have those special band-aids on them to help them to heal. She was very gentle and very sweet the whole night. About every 10-20 minutes she would say, "So mom, how are you feeling?" I felt like I was back in the hospital with the nurses asking all the time how I felt on a scale of 1-10.  Haha.  She sure is a sweet girl and it reminds me how lucky I truly am to be her mom!  I couldn't ask for a better girl!

Today, Sean and Paige went to work and I'm on my own.  I'm TRYING to lay low as I think I over did it putting things away last night when Sean was getting Paige as I was in quite a bit of pain last night.  It's REALLY hard being home and knowing things like laundry need to get done, but I can't lift more than a milk jug.  I don't want to fall backwards, so going to lay low, but it is really very hard for me!!!  I was excited for Sean to get to go back to work today.  I know work is never very exciting, but to have some normalcy in life is ALWAYS a good thing and small sigh of relief! :)

So, here's to a good day today...by myself....and not pushing myself any harder than I should!!!!

I POOPED!!!!!

What a GREAT night last night!!! Kept up on my meds instead of "waiting to see how I would feel," slept upright in the recliner for most of the night until my tailbone started to hurt and got up easily with little pain, then moved to the bed and slept almost upright which made it much easier to get up.

But....the BEST PART OF THE WHOLE NIGHT......I POOPED!!!!!!! First time since surgery! I know it's gross, but this is SO good in the gastrectomy world as it means all my parts are working together!!! I just want to shout from the rough top, "EVERYONE- I POOPED, I POOPED, I POOPED!!!" This makes me so happy!

Now, we are outta here and on our way back to Biz. Hope the trip goes smoothly!

INCISION

This incision is the only reason I'm still taking pain meds. It's right under my left breast and near my lung. They say that incision is always the worst and I agree!!!!!

 It really is crazy to me that I have NO stitches OR staples, yet they removed my whole stomach!!!!!

WAL-MART

Got out of the hospital about 3pm yesterday and ran to Wal-Mart (Sean pushed me in a wheel chair) to get the vitamins and supplements I'm supposed to start on as well as some jello, popsicles, juice, water, and food for Sean. We, also, stopped at the pharmacy right before we left St. Mary's for the prescriptions I'm on. I was thankful there was a wheel chair available at Wal-Mart or I wouldn't have made it from one side of the store to the other. We are now resting and walking here and there in the motel room until Sunday to make sure we can do this on our own. St. Mary's is literally right across the street, so if something doesn't seem right, we can cruise right over.

It seems like my nights are a little rough due to laying all the way down and then having to get up to use the restroom. Sitting to standing is nothing, but that laying to sitting to standing kicks my butt!!

Sean just got back from another Wal-Mart run. I packed yoga pants, but they hit one of my incisions. So, I had Sean pick me up long t-shirt pajamas. What a world of a difference that makes. Also, he grabbed a heating pad. Heating pad+no stomach/incisions=heaven!!!! So so good. :)

Thank you for the continued thoughts and prayers!!!

RELEASE

Getting released this afternoon. Will probably leave about 3 since that's when check-in is. I am excited Sean will get to sleep in a bed and take a shower! I'm NOT looking forward to the elevator rides and possibly walking super far to get to our room. Dr. Kendrick said the pills and water getting stuck is not uncommon as everything is trying to heal and will contract while doing so. So, so far so good....we will see how the afternoon goes as it comes!

ROUGH NIGHT/MORNING

Had a rough night/morning. Very gassy which is good, but painful and quite a few deep coughs which hurt like heck. Had 3 meds to take orally and they along with just plain water were getting stuck in my esophagus. I had to tap on my esophagus to get them to go down which wasn't comfortable, but once they were down, I was good. You could literally hear them gurgle down. Talked with Dr. Kendrick's assistants and they said to try and space my meds at least 5 minutes apart when they are oral and use water that isn't super cold as that could be what's making my esophagus contract and not let things through properly. Dr. K will be in some time this morning, but plan is still to leave this afternoon for the motel for two nights since I was able to get plenty of water in. Just can't wait for this IV to be out. Between the IV and heparin shots, I look like I got physically abused pretty bad...lots of bruises!

SHOWER

Just got out of my first shower post-surgery. As much work as it was to do, it was totally worth it. Now, I just need to chill and catch my breath. I'm liking all of these step forwards!

ROUGH AFTERNOON

Having a rough afternoon full of pain from gas and coughing. It hurts so bad to cough, but if I don't, pneumonia might set in and that's not good.

Got a big cheer from my nurses when I was able to pass gas.  It's a really big deal!

I've been on 5 of my 6 walks so far and sat in a chair 4x like I'm supposed to.

I've only had jello and a popsicle along with water today. I woke up to Sean being gone and when he came back he said he went a got a huge chili burger. Glad someone is able to eat as I'm just not feeling anything.

Looking forward to a better evening and Dr. K said if all goes well through the evening, he will stop in tomorrow morning and get me released. Kind of nervous, but each day gets a little easier and hoping that getting into a new routine will be good.

Right now, just focusing on a decent evening/night. Ugh!

LEAVING THE HOSPITAL....MAYBE?

Just met with Dr. Kendrick's team...looks like we might be able to leave the hospital tonight or tomorrow sometime. Just will have to see how it goes when they come to check back in this afternoon. As long as I'm keeping fluids up to par and no nausea (which I haven't had since yesterday morning), we will be good to go...probably just need to work on a few more longer walks. ;)

ON MY WAY TO RECOVERY!!

On a scale of 1-10, how are you feeling? Haven't heard that a million times already! Ha! Currently, I'm sitting at a 2. Last night it was an 8 and this morning anywhere from 6-8. Walking hurts, but is good at the same time as long as I hold my big bloated belly. Coughing, also, hurts like something fierce. BUT...with each obstacle, healing is going on and that's nice.

I was relieved to hear the surgery was laparoscopic and not because of the difference in scars as nobody ever sees my belly, but rather less hospital time and I can get back to my new life quicker. :) Besides the pain, the only downfall is that I couldn't get a single room and Sean refuses to leave me, so he's been sleeping in the waiting room.

I'm not sure, yet, when I will get released due to me feeling very nauseous and having quite a bit of pain when Dr. Kendrick stopped by today. He said he will swing over tomorrow and go from there! Also, the nutritionist stopped in today to say HI and will come back tomorrow with more info.

So far, I'm allowed clear fluids and have had quite a bit of water, a popsicle, and 2 cups of jello. It sounds like this is what I'll be on for the next 1-2 weeks, then can move to soft food. I got my first B-12 shot today and 3 shots to prevent blood clots.

So....that's what I know. All went well and although last night, I was asking myself why I put my self through this because of the pain, I had to put my brain and heart back in check today as I know EXACTLY why I chose this route. I'm getting really sleepy, again, so going to rest, but wanted to give an update!!

Thanks for all the thoughts, prayers, etc. yesterday...I know they helped and please keep them coming through recovery!! ❤

STRONG

Hoping Dr. Kendrick will let me wear these into surgery today so when I wake up, I have this AWESOME reminder when I look at the end of the bed because God knows a few reminding motivators never hurt!!! ❤

I GOT THIS

***TODAY IS THE DAY***

And I totally got this!!! However, I cried myself to sleep and woke up about every two hours. Thankful I will be put to sleep for most of the day otherwise I would be non-functioning. I look forward to waking up and hearing that all went well with my LAPAROSCOPIC surgery or else...;)

I'm thankful for so many friends and family in my life who have my back and for the HUGE amount of support. I'd be an even hotter mess than I am currently without it. The thoughts, prayers, good vibes, etc mean more than you know and please keep them coming for myself, Dr. Kendrick and his team, and for all of you! I'm sad I have so many angels that are not here on earth, but rather watching over me....but grateful for them at the same time. If it weren't for two of them, I wouldn't even be here knowing what I know with the option of being preventative. I am a very lucky girl.

I got this! I'll write soon! XOXOXO

8:45am

8:45am.....that's the time I check-in. Nerves are getting the best of me and not looking forward to little to no sleep, but here we are....let's do this!

150% CONFIDENT

To say I feel 150% confident for surgery tomorrow is a spot on remark. Yesterday, I couldn't have said that especially with the tears rolling down my face every few hours, but EVERY time I meet with Dr. Kendrick, I feel so good and so sure in my decision! PLUS, having the #1 laparoscopic surgeon IN THE WORLD doing my surgery can sure help a girls spirits. ;) His assistant during surgery came in to introduce himself and let me know that piece of info. He said Dr. Kendrick takes his work seriously and never boasts, so you will never hear him say that, but I think it's so important for you to know that you are LITERALLY in the best hands in the WHOLE WORLD.

So, I'm not even talking about an open surgery, we are keeping our eye on the prize....a laparoscopic surgery. Surgery itself will only take about 2 hours, but with prep and recovery, we are looking at 4-6 hours. Plan is that if all goes well, which it will, I will be released by Friday and come home Sunday. The plan currently is NOT to take my gall bladder, but he said he would be ok with removing it if it shows any inflammation. He said otherwise they have a med they put me on 2x/day for 6 months when weight loss is most significant and that's what causes the gallstones to begin with. I can call anytime from 8:15-midnight to find out what time I need to check in. I have to have a shower tonight and tomorrow with special body wash for my abdomen twice. No eating after midnight and no drinking 2 hours before surgery. That's what I know!! :)

Also, met with the team doing the study with anesthesia and pressure while under. They said this study is going on world-wide and there are only 50 patients coming from Mayo-Rochester, so that's cool I'm 1 of 50! This study will let hospitals know, going forward, whether to do anesthesia with low or high pressure. Glad I get to be a part of this!!

Plan to enjoy the evening with the hubby and hit up a movie before the big day tomorrow. I will keep you posted on time and location and such later!!!

But......after seeing Dr. Kendrick, I KNOW I got this!!!! However, PLEASE keep sending thoughts, prayers, good vibes, good juju, etc. I would reallllly appreciate it! ❤