THANKSGIVING

This is my first Thanksgiving since having my prophylactic total gastrectomy in February.  Thanksgiving has always been one of my favorite holidays.  I owe that all to my family. For as long as I can remember we spend the holiday in Kingman, AZ with my mom’s family.  For those of you who know about Kingman, you’re probably thinking ‘why would you want to spend any time there?’  And it’s true. Most people know Kingman as the armpit of Arizona located on the way to Las Vegas.  It’s a small town with nothing super exciting to do.  But to be with family is all I need for Thanksgiving. It has always been super laid back and a time to catch up on everyone’s lives.  

Earlier this year I didn’t think I would be too excited about the food for Thanksgiving. Given nausea has been a pretty big issue for me.  As you know, that has gotten so much better. Last week I went the entire week without taking the Marinol (the only medication that actually helped with nausea for me).  That’s huge for me.  People in my CDH1 world have always said things get better and eventually you forget you don’t have a stomach. I had a hard time believing that in the early days. I just tried to take their word for it and go day to day. Now, when people who will be getting their stomachs remove ask what it’s like to live stomachless, I’m telling them the same things I had heard.  Most of the time I feel very normal.  As long as I eat every 2-3 hours and keep up with fluid intake, I feel great.  So this week being at my aunt and uncles house will be perfect. There is always yummy food to eat.  

Aside from Thanksgiving, the holiday chaos has officially begun at our house. After two whole weekends of putting up Christmas lights, they have been turned on.  It is almost complete with all the finishing touches. Holiday crafts are sprinkled all over the house awaiting to be completed.  Cookie baking parties and Christmas light viewing are making their way onto the calendar.  I’ve never been good at teacher gifts for my daughters school, so that is a goal for me this year. Nothing super extravagant, but something well put together and thoughtful.  And don’t forget about our elf who should be showing up any day now.  This is my favorite time of year despite all the chaos and stress.  It’s just so magical for the kiddos. I hope I can continue to live in the moment and enjoy all the precious little moments with my kiddos and those I love through this holiday season.  My husband can attest I’ve been a bit stressed lately. Time to take a chill pill and roll with the punches. I know he would appreciate it. 

Time is going too fast

I have 2.5 more weeks off from work and feel like it’s going way too fast.  Since I wrote last, things have been pretty up and down as per usual since getting my stomach removed.  Just a continuation of the roller coaster ride.  The last post I talked about be nausea and lack of appetite while also trying to gain some weight back.  That got better the second week.  I felt so good.  I got some projects done and got out of the house quite a bit.  Actually took a little easy bike ride with my 4 year old, which kicked my but a bit honestly.  But felt so good.  And last week was a blah week again.  Nauseated a lot of the time.  I got a massage and had acupressure, which I thought was going to help more than it did.  But still glad I did it.  And now, today, I’m feeling pretty good.  Just more of the same ol’ same ol’ with my new life.  I’ve been a little more active with the kiddos.  It seems to help with the nausea a lot.  So we play fetch or soccer in the back yard and I run around a little bit.  It also increases my appetite and gives me more tolerance for drinking larger amounts of water at a time.  

I have gained about 4lbs back which is really exciting for me.  My persistence is paying off a bit.  I had a visit with my primary care provider to talk about my iron levels.  They were trending up until this last visit to the NIH in which they dropped a very large amount.  Which seemed weird to me and to my surgical team.  So they recommended I follow up with my PCP.  After much discussion and reasoning with her, she has agreed to order blood to keep an eye on it.  Thank goodness.  She was trying to send me to a hematologist (blood Dr) so they could keep an eye on it.  I strongly disagree with this.  My team at the NIH is keeping such a close eye on all my labs including nutritional labs and the only thing I think I need to looking at is my iron and related levels while I’m not at the NIH since it’s been a little all over the place.  I’m so relieved she agreed to do this.  Was starting to think I was going to need to see another primary care provider or try out a more wholistic provider.  I’ve been talking about going to see a doctor that practices Functional Medicine.  I’ve just been dragging me feet.  I’m really not wanting to spend a ton of money, just because we are cheap.  And I know it’s an investment in my health, but when insurance doesn’t cover it at all it adds up real quick. Anyway, I have the name of someone I’m interested in.  Also, I feel I’ve been doing really well, so why go see them now.  I go back and forth about it in my head all the time, hence me dragging my feet.  

I can’t believe Thanksgiving is just 2 weeks away.  This time last year I was basking in the joy of just eating whatever I wanted whenever I wanted.  Honestly, engorging myself at times.  And this year I can’t complain at all.  I tolerate all foods.  I have been tolerating whole fresh foods best, which is great because I love it.  But I haven’t found a food I can’t eat right now.  It’s all about portion control.  If I want dessert, I eat dessert.  Stuff that is really sweet, I usually just take a bite or two.  Other stuff that isn’t so sweet, I can eat much more of.  It’s definitely the force healthy diet I thought it would be.  Which is totally fine with me.  It’s like my body is just more sensitive now.  Like when a food makes me feel good, I can feel it better if that makes sense.  Or on the flip side, if a food makes me feel like crap, I also feel that better than I could have before.  Being home from work has kind of made my eating day to day a bit mundane.  Just the same things over and over again.  Just because I know what I like and what works really well for me.  But the last couple of days I’ve gone out to lunch with friends and such and I’ve very much enjoyed it.  We chose restaurants that are so fresh and serve whole foods cooked in really healthy yummy ways.  Which is probably contributing to me feeling so good.  It’s amazing too because when I eat food like that I am able to eat so much more of it.  I had been steering clear of veggies too much for so long because I was worried about more weight loss.  But now I know my body thrives on good food and I’m able to eat more when I feel good.  Anyway, I’m rambling now.  So I’m excited for Thanksgiving food and being able to just east turkey with all the fix-ins all day long.  And hopefully be able to enjoy a bit of my grandma’s homemade dessert, whichever she chooses to make this year.  And my uncle’s homemade rolls.  I could go on and on about it.  

Anyway, I’ll make sure to write again just after Thanksgiving, unless there is something exciting that happens again before then.  ♥️

HALLOWEEN IS HERE

It’s been a little over a week since this last surgery. And although I’m feeling really good, I’ve been reminded this week that I just had surgery. Haha.  My mind wants me up and being productive. I have 6 weeks off and I have so much I can accomplish in that time!  But my body keeps giving me subtle reminders to take it easy and rest. It’s the intermittent nausea and total lack of appetite.  Real bummers.  No, but really, I feel I’m doing really well and can’t complain.  The one thing I have been very adamant about this week is eating every 2 hours so I can gain some weight back.  I lost 6lbs through all of this.  Between the pain and then having surgery.  I gained a couple pounds back within a few days to just then lose it again.  My weight is not bouncing back quite like I thought it would.  So I’m just going to continue pushing through with high protein and high calorie foods to get this weight back on.  To bad I can't just chow down on the Halloween candy.  Haha  Wish me luck.

In other news, the kids and I have been preparing for Halloween.  We didn’t decorate this year at all just because I didn’t feel like it.  Instead we spent an entire day making Halloween cookies and decorating them.  While Emma was at school for a half day, Owen and I made the sugar cookies.  He loved rolling out the dough and using cookie cutters to produce bats, witch hats, cats, pumpkins, and ghosts.  When Emma got home we made royal icing and had a blast making the different colors and piping them onto the cookies.  Once we got the right consistency for the icing Emma did an amazing job decorating.  Owen had so much fun caking on the icing and then drowning the cookies in Halloween inspired sprinkles.  As much fun as we had this day did wear me out a bit.  I made sure the following day I had nothing on my agenda.  Well, nothing except cleaning up the kitchen from all this cookie fun.  Needless to say, I waited for Matt to be home to embark on pumpkin carving.

HAPPY HALLOWEEN!  Enjoy your week and maybe next week I’ll have more to chat about.   

Feels So Good to Be Home

Okay, let’s back track a bit.  Surgery was schedule for 2pm on Friday afternoon, which meant I was allowed to sleep at the lodge with Matt on Thursday night.  Thank goodness!  We both got a restful sleep and were ready for Friday.  They still wanted me to be NPO at midnight which I asked the anesthesiologist about at my pre-anesthesia appointment on Thursday.  She told me what I already know…technically it’s no solids 6 hours before and no clears 2 hours before.  So my grand plan was to eat breakfast in the morning and then be NPO.  Well, I woke up Friday morning second guessing this grand plan because I know how it works in the OR.  There is always a chance they would want to take me sooner if there’s an opening in the schedule and the docs are available.  And I did not want to be the nurse patient who didn’t listen to instructions holding up the procedure.  So I just took some sips of water and called it a day.  In the morning I kept thinking “ugh, being NPO sucks” and then it dawned on me.  I have been forcing myself to eat every 2 hours and drink all day long for nearly 8 months now.  And now they are giving me permission to stop it all for half a day and I’m complaining about it.  What was I thinking?  This was a dream!  So I thoroughly enjoyed not having to eat or drink anything for several hours.  My mind didn’t have to be preoccupied with what I should be drinking or what my next meal was going to be.  I kind of enjoyed just doing nothing.  Matt on the other hand was getting a bit antsy, so I kept sending him to do little things went once in a while.  Then, I was starting to think things like “what are we doing here?  I feel great.”  My mind goes to crazy places people. But I kept reminding myself we were there for a reason we were going to figure out what was going on.  Fast forward to pre-op time.  We’re sitting in pre-op talking with the anesthesiologists and nurses when around the corner comes my surgeon, Dr Davis.  You see, his wife just had their third baby on Tuesday morning and he was supposed to be at home with his family, not at the hospital with us.  So, if you know me at all you can imagine I immediately got teary eyed.  All the nerves of having a surgeon I don’t really know, but trusted because Dr Davis trusts him, just melted away.  All the doubts of being there…gone.  He told us he saw a spot on my CT, which I had the day prior, that looked suspicious for probably causing my pain.  So I felt very good going in to surgery that we were going to figure this out and things will be great. 

Surgery went very well.  He found the spot he had seen on the CT.  He thought it was going to be a lot worse but ultimately it was an adhesion that attached two parts of my small bowel, which he said could definitely be causing intermittent partial small bowel obstructions. Which could definitely have been causing my pain.  So he got rid of that and fixed my umbilical hernia.  I stayed admitted at NIH for a couple of nights just to make sure my pain was under control before flying back home.  Other than being sore, it’s been easy peasy compared to my gastrectomy.  On Sunday, I was feeling so good we went sight seeing in DC for a few hours.  Visited a couple museums we hadn’t been to before.  All in the pouring rain.  We had a good size umbrella to share but boy oh boy we did not have the right shoes.  By the end of the few hours our shoes were soaking wet and we were both ready to get back to the hotel to dry of and warm up.  

Flight home went by fast.  Matt was flying standby again, thanks to my aunt.  And he got on the flight!  Woohoo!  He was literally the last person the the plane.  And to make things better, the seat next to me was empty.  So anyway, flight was good.  And we are so glad to be home again.  The last week has been quite the whirlwind.  So now it’s time to rest and heal.  Which is going to be very challenging for me for 6 weeks!  I’m hoping to get some quiet projects done that I did not have the energy to do when I was off 8 weeks with the original surgery.  Like try to get a couple of my annual photos books complete that I’m super behind on.  I’m still working on 2016’s!  

Anyway, I feel like rambling now. So, till next time.   

Beyond Grateful For Our Village

Some of you know this already, but I’m on my way back to the NIH today. In the last 2 weeks these belly pain episodes have only gotten more frequent.  This pain is difficult to describe with words. Just know if comes on pretty fast and is completely debilitating.  When it’s happened at work I have had to go ly down and try to work through it. It’s too bad to even get in the car and drive home at that moment. Thankfully the last few have only lasted about an hour or so. Last week it happened 3 or 4 days in a row so my surgeon got a bit concerned.  He’s worried I’m having intermittent partial small bowel obstructions that are resolving on their own. His words “it’s good they are resolving on their own.  That’s fine until it’s not”.  He’s doesn’t really know what’s causing this but is thinking it’s adhesions.  Anytime you have abdominal surgery you are risk for developing adhesions.  When his nurse coordinator called me yesterday and asked “can you fly out today?” I was a bit shocked. So we settled on the next day (today)   So I’m currently on the plane and am planning on going back into the OR on Friday. He wants to do a diagnostic laparotomy to have a look see in my belly to see if they can figure out what is going on. Fingers crossed it is something simple like adhesions they can just fix and be done with it.  He’s going to fix my umbilical hernia at the same time. Who knows, maybe that is the root cause of all these issues. We won’t know until we know.  

I am just so grateful to have such an amazing team looking after me. I was actually beginning to feel like I was going crazy with these pain episodes.  My dietician and I couldn’t find any correlations with food or drink intake. Nothing I tried would make it any better or go away faster. It just seemed to be on its own course and I just had to hope it wouldn’t last long.  It was a huge relief when my surgeon told me it he was concerned and thought I should fly back out sooner than later.   As much as I hate the idea that I need another surgery and that I have to take 6 more weeks off from work, I have come to terms with it and am ready to figure this shit out. 

I am also so fortunate and grateful to have such an amazing support system.  Yesterday, when I talked to my bosses at work, they didn’t even bat an eye when I told them I needed to get on a plane the next day. Even in the midst of our short staffed unit and our busy schedule.  Their last words were “remember...the most important thing is taking care of you”

And the same goes for my family.  I had a couple conversations with my husband before ultimately deciding this was the best thing to do. On the same page from the beginning. And my mother-in-law, without any hesitation, came to our house at 6 am this morning to stay with the kiddos until we get home.  And she is not a morning person.  Haha. We don’t have a definitive day to go home as it depends on what happens in the OR. But we are all hopeful it’ll be by early next week.  

To top it off, flights were insanely expensive with les then 24 hours to take off. My aunt who works for American Airlines was able get Matt a buddy pass.  And he got on my same flight with no issues. It’s really all come together nicely at such short notice. 

Anyway, this affects so many more people (family, friends, and work) than I’ve mentioned here and I am so grateful to each and every one of them.  It really does take a village.  I can’t imagine having a better one. 

Belly Pain

Since my last post a couple of weeks ago my weight has been all over the place. I had gained the 2 lbs back. Woohoo!!  And then I got a respiratory virus which had me coughing crazy amounts. Stepped on the scale at one point to see if lost 4 more lbs.  I’m not stressing about it at all because I know I’ll bounce back pretty quickly.  I have seasonal allergies and asthma and this time of year in AZ just gets me every time. So last night was the first night I’ve actually got a good night sleep for about a week because of all the coughing. Despite all the drugs you can imagine.  And to top it off I’ve now had 2 more episodes of this extreme abdominal pain. Last week it was not letting up at all and I ended up going to the emergency room. Had a CT and everything looked normal. The Dr gave me a script for an antispasm thinking it might help the next time this happens.  So yesterday when it came on again I took it. Pain was gone after 2 hours of taking it. So hard to say if it actually did anything or if it was just the process and a coincidence. I won’t bore you if all the details of these pain episodes. Just know I’ve been in very close contact with my surgical team and we are actively trying to solve the puzzle.  So it’s been a crazy couple of weeks, hence not posting until today.

I will add however than I’ve done some yoga at home a couple of times since my last post. On the days I’ve been feeling good I’ve found videos on YouTube and did them at home with my 4 year old. And I’m definitely going to be practicing yoga more.  It’s pretty awesome. And my 4 year old loved it too.  

So stay tuned. 🤞🏻 the pain doesn’t happen again but if it does the medicine actually does help and that we can figure out what the heck is going on. 

To Exercise or Not to Exercise

Happy Monday everyone!  It’s been a pretty normal week for me.  Just really listening to my body and resting when it tells me to do so. So Thursday I rested a lot. Which totally prepared me for the busy weekend.  2 birthday parties in one weekend for my daughter to attend was a bit insane, but fun nonetheless. Emma had a blast.  Life is getting back to its normal craziness for us. Go go go. But I’m trying really hard to keep everything relaxed and enjoy it all. Instead of running around like a chicken with my head cut off like I used to do. That’s just not good for anybody.  

The last few weeks I’ve really been thinking about incorporating more exercise into my daily routine. So I’ll do an easy 20ish minute body weight workout here and there. In which I’m pretty sore the next day and it’s feel oh so good.  But I have not made it a habit or routine by any means. Like I’ve probably actually done this like 2 days in the last couple of weeks. Just easing myself into it.  So when I stepped on the scale yesterday I was a bit surprised to find I lost another 2 pounds. Disappointed really. I don’t feel I’ve been expending more energy. When I really sit back to reflect I realized I’ve probably been a little more lax on eating.  I still eat constantly but if I miss a ‘meal’ I don’t fret about it. And I’ve been eating more fruits and veggies because they make me feel good.  So I guess I shouldn’t have been surprised to see the scale yesterday morning. But it is a friendly reminder that I still need to work hard everyday. I need to be vigilant with eating and hydrating. And I know most people would kill to have the problem of not being able to gain weight. The grass is always greener, right?  I never thought in a million years I would ever have to work hard to gain weight. And yet, here I am. And it’s not all it’s cracked up to be.  

So just to give you all an idea. Before surgery I gained 20 lbs.  I didn’t really intentionally gain this weight but I ate whatever I wanted whenever I wanted. I knew I wanted to enjoy food as much as possible before surgery. I didn’t know how long it was going to take me to really enjoy food again. So no regrets there. And since surgery I have now lost 46 lbs.  So I’m officially considered underweight with the BMI scale (don’t get me started on my feeling about this scale). So if I can gain these 2 recently lost pounds back I will be a happy camper.  And when I learn how to incorporate more exercise without losing more weight hopefully I can put on a bit more muscle and then I’ll really be a happy camper. It’s insane how fast you lose muscle mass.  So I’m thinking of practicing yoga for stretching, strength and stamina.  I’ve been playing with this idea in my head for a few weeks now, so maybe one of these days I’ll actually start. 

Oh, and as for the abdominal pain from last week.  I’m still talking with the surgical team to figure out what it could have been. We’re bouncing around with a few ideas. But nothing concrete yet.  I’ll keep you posted.