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!