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. 

One day past my goal --- not too shabby

It’s Sunday evening and I told myself I’d write a blog post on Saturday.  One day off…not so shabby.  This past week has been the exact roller coaster ride I was talking about in my last post.  Had some intensely acute lower abdominal pain the other day.  It happened 3 times.  All shortly after I ate.  Went to bed that night and it hasn’t happened again since.  So bizarre.  Only thing I can think was that I was eating too fast and/or swallowing too much air while eating.  Like it was gas pain.  But I didn’t pass tons of gas at any point after it all happened.  Anyway, I was at work when it happened the first time and I don’t remember eating super fast, feeling super hungry while eating, or talking a ton while eating.  I’ve been super conscious about eating slowly and chewing really well the past couple of days and like I said it hasn’t happened again.  I am planning on calling my surgical team tomorrow just to let them know about it and see if they have any other thoughts.  I also think it could be related to my umbilical hernia as the pain is right where my hernia is.  But who knows!

Today we went out on the lake with my in-laws.  They have a boat so we took the kids and had a blast.  Kids loved riding on the tube and just swimming around in the water.  Weather and water temp were wonderful!  Such a good way to stay active.  I did some treading water and swimming.  So I feel like I did a little ‘exercise’ today.  So I’m trying to compensate with my calorie intake.  Eating some nut butter as I type at the moment.  One thing I’ve learned through this journey is when I don’t eat enough calories one day I tend to pay for it the next.  So that is something I”m going to have to remember as I start trying to incorporate more exercise into my routine.  Oh! and as I was riding on the tube and being whipped around I was laughing hysterically.  To the point I felt I couldn’t catch my breath at times.  Which was wonderful! haha.  When we stopped I started coughing pretty hard as I tend to do with my reactive airway disease and I think I was refluxing.  I think the reflux was causing me to cough.  This has happened one other time when I was in California with girl friends when we were laughing pretty hard.  So it’s like the pressure in my abdomen from laughing is causing the reflux.  I had talked to my surgeon about this at my 6 month follow up appointment and he said as long as it’s not painful, there is nothing to be concerned about.  And it totally doesn’t hurt when it happens this way.  It’s just like the food and drink is being pushed back up enough to cause me to cough.  Unlike the reflux I experience at night.  Sometimes I wake up in the middle of the night or in the morning and find myself laying more flat than is probably best and I have an awful heartburn feeling.  But it feels much worse than the typical acid reflux heartburn and it lasts way longer!  I still haven’t quite figured out what works best to get rid of it.  Some of my fellow seahorses feels it’s best to eat or drink something acidic to counterbalance the alkaline bile.  I haven’t found this to be the cure all every time.  Another learning curve I’m still experiencing.  

Have a good week!!  Thanks for reading.  Be back in about a week!

I'm sorry it's been so long!

I’m sitting at the airport on my way back from Maryland for my 6 month follow up appointment at the NIH.  Wow, it’s been 6 months.  Honestly, in some ways it feels like time has flown by yet in other ways it has taken forever to get to this milestone.  It’s kind of like raising kids - - the days are long but the years are short.  If you would have asked me 4 months ago what the future looked like, I don’t think I would have had a very optimistic answer.  This road has been rough to say the least.  As much as I have tried to keep a positive attitude, roll with the punches, and be thankful I’ve had the opportunity to make a choice rather than sit back and let my genetics make a choice for me, it - has - been - rough.  I’ve been beating myself up for not writing about my experience as much as I planned on doing.  It’s just like anything else thought, right?  You do your best in the moment and I’m learning to be more kind to myself.  However I still feel the need to reflect on why I haven’t been blogging as planned.  I think there are several reasons.  Like I wrote about in my last post, I’m learning to really live in the moment since no next moment or day is guaranteed.  While living in the moment with my kiddos, husband, family, friends, and work it is challenging for me to prioritize sitting down and writing about my life.  So that’s one reason.  Time is a huge factor as well.  When I have the time without distractions (and I really like to focus when blogging/journaling) I’m pooped.  It’s hard enough to accomplish all my motherly and wifely duties while still staying balanced myself that, again, writing has just not been a priority.  Which I’m not proud of.  I started this blog to journal my stomachless journey so I can reflect on it myself and to help other people in the same or similar situation.  And now I’ve/we’ve missed out on 4 months of record keeping.  Again, being more kind to myself.  Lastly, this road has been much more difficult than I could have ever anticipated and when you’re not feeling well all you want to do is coast.  Before surgery I considered myself a doer, a go getter, high energy, and never wanting to sit still.  There’s just too much to do and so much life to live to sit around.  The last six months has taught me that it is okay to sit around.  My body has needed to heal and rest.  As much as I tell myself I’m being lazy when the kitchen is a mess, the laundry isn’t done, and the kids and I are watching another movie, I’ve realized this is okay.  The kids love to sit and watch movies with me.  We also love to play cards and legos.  This summer has been the best summer I have had with the kiddos since Emma has started school.  I thought it was going to be a nightmare to be frank.  If you know my little girl at all, you would know she is not an easy child to say the least.  She is my fierce, assertive, outspoken, passionate, decisive fire ball.  So she can be quite challenging most times.  But this summer we spend so much good time together.  When we weren’t at the water park (where they ran and played and I floated around), we were doing chores, playing games, entertaining our animals, watching movies, and planning our next adventure.  All 3 of us (Owen too - my 4 year old son) in perfect harmony (most of the time).  My husband was around too; I just don’t work as much as he does, so the kiddos and I have a lot of time on our own.  And I loved (almost) every moment of it!  And I want to tell you about our very first family camping trip, but first I’d like to touch on the awfulness of the first 6ish months of stomachless life.  And only for the purpose of being able to look back and reflect on how far I’ve come but also to reach those that are currently struggling with the roller coaster ride.

In my experience, this journey is perfectly described as a roller coaster ride.  There have been so many up, downs, twists, turns, tunnels of darkness, and light at the end of those tunnels.  I know I’ve touched on this a bit here and there, but I’d like to go into a bit of detail of the day to day life without a stomach thus far.  Learning to force yourself to eat even when you don’t feel hungry and worst of all when you feel like vomiting is very real in the first few months.  The nausea got so bad that every time I ate I wanted to vomit.  Then the food aversions developed.  I had never really thought about the psychological aspect of food aversions before this.  But my dietician gave me a pretty comprehensive lesson (over several weeks) on this and how to overcome my brains bad relationship with food.  It was hard work and actually still can be an issue at times.  But things have gotten exponentially better.  I am actually enjoying food again.  I am having cravings for good healthful food.  I still get cravings for crap food too, but not near as much as before surgery.  I’m enjoying being in the kitchen again.  Before about 5 weeks post-op I could not cook a meal for my family.  If I mustered up the energy and ‘stomach’ to do so, I wouldn’t be able to eat that food (because of the whole food aversion thing) which then meant I was preparing something else for me to eat.  Even watching cooking shows that I used to really enjoy watching, was nausea provoking.  That was one of the tunnels of darkness on this roller coaster ride.  One day would be just that bad, and then the next day was a good day (the light at the end of that tunnel).  Day to day just like that. I have to add that my surgical team prescribed me a medication called Marinol, which helps with nausea and appetite.  When I started taking this it was a game changer!  I would take it and know within the hour I would want to eat and I could do so without getting nauseated.  So I started taking this a couple of times a day.  Since Marinol is a synthetic form of marijuana, I can’t be taking it while working.  So I learned my days off were far better than the days I worked because of this.  And there have been days I’ve had to call out sick because the nausea was so debilitating.  So I would stay home, take the Marinal, focus on drinking and eating, and usually be feeling better by the next day.  Before the Marinol days the bad days would consist of me resisting drinking and eating because it didn’t make me feel good. Which would then lead into more problems the next day.  I’ve definitely learned to lean into this discomfort of nausea.  Most of the time when I feel nauseated it is because I’m dehydrated.  So now when the nausea starts to kick in, I force myself to sit down and hydrate.  Sometimes it just takes a few minutes of intentionally hyrdating to turn things around for the day.  Since learning this, my good days have started out weighing my bad days.  And now I can have a bad moment and turn it into a good day which has been amazing.  Which leads into the next challenge.  I have’t always known what I need in the bad moments.  In fact, I would only have bad days, and not bad moments.  A moment is fleeting where days last so much longer.  And I could have several bad days before a good day came.  I would try to remember exactly what I did on the good days to replicate it the next day.  The most frustrating part is it was almost never successful.  How can you do everything the same and get a different outcome?  Isn’t that the opposite of insanity?  Anyway, I digress.  I would get so annoyed when I perfectly replicated what I ate and drank on the previous feel good day and I would still feel like crap.  Welcome to the early days of having no stomach.  My surgical team reassured me too many times to count that this is all part of the process.  My intestines are learning to digest food in a completely foreign way.  They are not used to receiving chewed food and being expected to absorb the nutrients from food that hasn’t been completely broken down by a stomach.  It’s like by dietician said, my intestines are like “good morning, where the f*%$ did that stomach go?  This isn’t part of my job description.  I’m not doing that.” and then the next day “he still hasn’t come back?  Why the f*&$ would he leave us? “.  And put this on repeat for a whole year.  Hopefully one day (my dietician says about a year out) those intestines of mine will wake up and say “well, I guess that stomach isn’t coming back, so I better get used to this”.  So now that I’ve gone over some of the downs on this roller coaster ride, it’s time to tell you about our summer camping trip. (this is where I’d like to add photos, but I don’t know how to do that 🤫)

Since I wasn’t sure how I would be doing this summer we decided not go on a big family vacation with the kiddos.  Instead, we decided to rent a camper and go to the pines for a long weekend.  Matt and I were a bit nervous about this since neither of us had been camping since we were kids.  Crazy, I know!  Let me tell you … we had a blast!!  We drove up to northern Arizona and found a great remote spot just off one of the forest service roads.  We had a perfect view of the San Francisco peaks with a beautiful meadow in the foreground. Packing obviously took quite some effort.  In fact my husband can be given most of the credit for doing all the physical labor of getting ready (i.e. packing up all our stuff, picking up the camper including 2 hours of tutorial from the owner, and driving us to our serenity in the woods).  We got there just in time for it to rain.  Monsoon season is so unpredictable but this rain was just a light drizzle which was the perfect start to the weekend.  The kids and the dogs ran and played the entire weekend.  Surprisingly the dogs slept like babies in the camper because they were so worn out from running all day.  And that’s exactly what happened with the kiddos as well.  Mornings were brisk and chilly.  The kiddos pooped in a hole for the first time in their little lives.  Owen couldn’t stop talking about how much he loved camping.  We played card games, sat in hammocks, collected pine cones, when on lovely walks, blew dandolions, saw wild cows, felt cool breezes, played hide and go seek, and much much more.  It rained each afternoon which dampened the air just the right amount.  By the end of the weekend the kids and the dogs were more filthy than I’ve ever seen them  This really made my heart happen.  This meant they had the best time and Matt and I had the best time watching them that weekend.  We will definitely be going on more family camping trips.  

And now I know the main reason why I haven’t been blogging,  Because it takes me hours to compile this!  I’ve been writing this since the flight to Maryland yesterday.  So forgive me for any typos or gramitical errors as this is me.  Raw and unedited (mostly).  I need to write at least weekly to avoid this lengthy time suck.  Okay, I’m putting ‘write blog’ on my calendar weekly right now (yes, as I type this).  Let’s give it a shot and see how it goes.  

Stomach Pathology Results

I survived my second week back to work. It was a bit of a longer week than usual as I had to attend a certification renewal class on one of my days off.  It was just another week that confirmed that one day can be great and he next day not so much. Tuesday I felt great.  I had a big appetite and felt awesome every time I ate. I was feeling so good that I decided to try ‘gulping’ some water. Like instead of one swallow, try to swallow 3 times in succession. And it went really well. I would feel funny going down for a very brief moment and then that moment would pass. It felt so good to ‘gulp’ ice cold water.  But then Wednesday came and I was forcing myself to eat as my appetite was gone. And I definitely didn’t eat enough. Who knows...maybe the water ‘chugging’ did me in for Wednesday. Or maybe Wednesday would have been an off day regardless. All I know is I’ve definitely learned more now that ever to enjoy the present. Enjoy those awesome days because you never know what tomorrow brings. And even enjoy the not so awesome days because it could always be so much worse

I had a random thought this week about my pathology. I totally realized that I haven’t written about my results.  I heard my initial pathology results less than 2 weeks after my surgery. And honestly, it still stings a bit.  Everything was completely negative. They didn’t even find 1, not even 1 single signet cell (which is a very early form of cancer that is found in almost every single CDH1 patient when pathology is done on their stomach after removing it). At first I thought ‘just great, why did I even have the surgery?’ ‘Why did I put myself and most importantly my family though this?’ 

After just a couple minutes of reflection I  answered both of those questions.  We have no idea what would have been if I would have waited to remove my stomach. 1 year, 3 years or 10. But what I did know is that the risk was too high to chance it. I definitely did not want to end up like my Dad. And most of all I did not want my children to ever have to see me go through what he went through. So who knows. Maybe they just didn’t find the something that actually is in fact there. Or maybe my families mutation is somehow different than the others.  Or maybe our family doesn’t possess the ‘trigger’ that turns the HDGC on.  But I also know that now my stomach will be stored in small pieces at the NIH for research purposes forever. So maybe one day they will find these answers. And hopefully when my children are adults there will be more options and more discussion about what’s best.  I so badly hope neither of our children are positive for the CDH1 mutation. But if they do I hope we can have a different discussion of options than I had.