Abdominal Pain AGAIN 🤦🏽‍♀️

Hello.  The last couple of months have been filled with spending lots of time at home. School from home. Kids spending lots of time with Grandma while my husband and I work.  It actually has been a nice time to slow down a bit. As much as I miss people and social interaction.  Yet at the same time I have felt just as busy as ever. Trying to do school at home for our daughter has been an interesting change. It’s been forcing me to do school work with our pre-kinder kiddo. So that’s an upside.  It has definitely been a challenge adding teacher to my already diverse resume.  No longer just a nurse, mom, wife, housekeeper, and chef.  Now I can say I have experience as a teacher, PE coach, principal, and referee.  Haha. 

With all that said it’s even more interesting while experiencing all this COVID stuff as an inpatient in the hosptial.  Today is Friday. On Wednesday afternoon I started having abdominal pain. Left work early and drove myself to the emergency room. I was really hoping it would pass so I sat in my car for about an hour and half to try to wait it out.  Which was not working.  So after 3 hours of intense pain I went in.  I found it interesting they weren’t screening for or testing people for COVID upon entering. Nor were they offering people masks. 

Anyway, sat in the lobby a couple of hours before being taken back. That was fun. Being in intense pain and vomiting in front of everybody in the lobby was a new experience for me.  

Met the ED Dr who I had seen last year once for this same type of abdominal pain. So it was nice to see a familiar face of someone who I remembered liking in the past. Got worked up with labs, urine, IV, pain meds and a CT scan.  Thank goodness for pain medication!!  So they found a UTI but that doesn’t really explain this intense abdominal pain.  So they decided to admit me under observation since I didn’t feel comfortable leaving.  The pain medicine was working but once it wore off the pain would come right back. This is by far the longest this type of pain has ever lasted. Something has to be wrong. The CT didn’t show anything.  Which I wasn’t surprised about. I mean it’s good it didn’t show anything but it would also be nice to have a definitive reason for this pain.  So they admitted me.  I had a consult with a general surgeon. There’s nothing they see wrong that requires surgical intervention. And the gastroenterologist said the same thing...nothing they feel they need to do right now. Especially since the pain was gone by the time I saw them. The good news is that now I’ve been established with both of these specialists so I can call them if I need to.  

I just got discharged a couple of hours ago and it felt amazing to get home and take a hot shower.  Kids are at Grandma’a house swimming so I have a little quiet time to myself to gather and compose my thoughts and feelings.  It’s these moments when I have this extreme pain I completely regret having my stomach removed. I start thinking all the reasons I shouldn’t have done it. It doesn’t take me long to snap out of it as I know deep down I did the right thing by removing it.  But I think it’s worth mentioning for any of you who might struggle with similar circumstances.  

So now I’m home feeling ready to conquer the world. Haha. I feel really good right now. But I am forcing myself to rest and eat. I only ate a very small dinner in 24 hours. And then so far today I’ve only eaten 2 very small meals.  It’s amazing how fast weight can drop off me these days if I miss a few meals. So wish me luck I’m that department. 

Endorphins

I love the rain. The way the desert smells when it rains is one of the best smells.  And it’s not often it rains for multiple days in a row here I. Phoenix so I’m fully enjoying it. Windows were open all day letting in all the fresh air.  The only bummer part about all the rain we’ve had this week is that I haven’t been able to hike. Usually my little 5 year old and I go out for a short hike a couple times a week. He loves it just as much as I do. And I’m super impressed with the difficulty levels he’s been able to keep up with.  This week, however, has not been a hiking kind of week.  So yesterday I decided to try a group Tabata class at our community center for the first time since surgery. I was super nervous about it as I know how challenging these classes can be for anybody. Let alone myself who hasn’t done any hardcore exercise in over a year.  I felt very motivated because I’m feeling so good and really want to gain some muscle mass back.  I had a water bottle full of slightly diluted Gatorade to try to prevent any hypoglycemia. And I ate a nice protein and carb filled meal right before hand.  And I did great!  I felt so good the entire time. And after felt amazing. My muscles felt pretty weak for half the day following. Nothing surprising there.  It felt like a weight had been lifted off my shoulders to know my body can handle this kind of stuff again.  So I’m super stoked to started really exercising regularly again. So stoked I decided to go back for a cardio class today. A little different than the Tabata obviously.  The Tabata class focuses more on strength training and building muscle.  But the cardio class kicked my butt a bit more.  Which also felt amazing.  I really went to try to combat the lactic acid build up in my very rested muscles. Haha.  I think it helped a bit but my body is SORE.  In places I’ve forgotten have muscle. It hurts so good.  

When I got home from my workout, I received an email that my one year follow up appointment has been postponed. My daughter, mom and myself were going to Maryland next week for my appointment. We were making a mini vacay out of it. And hoping to see cherry blossoms. But because of COVID19 the NIH is trying to free up resources in case they need to respond to this crazy pandemic.  My daughter is so bummed.  Being a 7 year old doesn’t help her understand the complexity of this entire situation.  I understand everybody is trying to do their part to prevent the virus from spreading with all the cancelled events and things.  But I do not understand the hysteria and rushing to the store for toilet paper among other things.  Wash your hands people.  And don’t flood the emergency rooms with things that are not an emergency.  Anyway, I digress.  Hopefully we can get my appointment rescheduled for a couple months from now and she can still go with me. 

Till next time...

Life.Is.Good.

It’s the beginning of February in Phoenix, Arizona and the weather this weekend has been amazing with high’s in the high 60’s/low 70’s.  The perfect time to embark on a dream that I’ve had for many many years - growing my own food/starting a garden.  

Over the years, we just haven’t felt quite ready to accomplish this for one reason or another. Plus, over the years my husband and I have had different ideas and goals on the topic. So it just hadn’t ever come to fruition.  On Friday, I was at work when I realized my husband got home early. And to be completely honest a teeny weeny bit annoyed as my mind got negative and I was thinking ‘ugh, he’s probably just relaxing and enjoying his Friday afternoon to himself’.  (I know, very lame of me.  But hear me out) While our amazing daughter was giving a very short presentation/speech in front of her entire school at an assembly. Mind you, she is not a public speaker. She has never been the one to enjoy being the center of attention with large groups of people (she has not problem being the center of attention at all times in a more intimate setting - haha). So this was kind of a big deal. And she volunteered to do the part at that. So I was and am very proud of her for this and was super bummed I’d be working instead of sitting front and center to cheer her on. So when I found out my wonderful husband was home instead of being at the school supporting our daughter I was a bit annoyed.  I chose to wait until I was home to say anything about it as I knew how bitchy it could come across if I sent a text ‘why aren’t you at the school?’  Well, I got home to find out he had been out and about gathering all things needed to build my dream raised garden bed.  Which is something I obviously had no idea he was doing or even thinking of doing on this particular day. And this is only one of millions of reason my husband is the most amazing.  

So, now that I’ve digressed a bit, yesterday we built this garden bed of my dreams. And today we are getting the irrigation set up and filling it with all the good things needed for a flourishing edible garden.  I’ve always been a bit overwhelmed and paralyzed by the over analysis when thinking about gardening as I don’t have a green thumb and don’t really know the first thing about growing food.  But with a little practice on indoor plants and some research I am so excited!!  I’m excited to plant the seeds in the nutrient dense soil.  I’m excited to feel that souls in between my fingers.  I’m excited to see those little seeds blossom into little tiny plants.  I’m excited to spend more time outside nurturing these little plants while my kiddos play in the yard.  Being outside in the Arizona sun is one of the best things in life.  

Which is one reason I went on a hike this morning. So I’ve been going on these little mini hikes lately. Like a mile. Usually takes me about 20 minutes to get up the mountain and back down again. The first couple of times I had an issue with my blood sugar crashing as soon as I got back down the mountain. Thankfully I had some lemonade in the car and my family with me in case I needed help with anything.  But all was good as soon as my sugar came up.  I’m still in the very early stages of figuring out my new body and how it reacts to any sort of exercise. But it feels so good to be getting back to being active and enjoying the outdoors the way I’m used to. Which is why I was super stoked that I completed a 4 mile hike today.  I had diluted Gatorade in my water bottle to prevent the sugar drop. And I ate a good meal right before going with a good ratio of protein, fat, and carbs. 

So here we are, 2 weeks shy of a year post prophylactic total gastrectomy and Life. Is. Good.  

Iron Levels

My first blog post of 2020.  I got my iron levels drawn this last week.  We’ve been keeping a close eye on them as they have been on the low side many times since surgery almost a year ago.  Can you believe it’s been almost a year?!  12 months ago I was anxious as hell in mentally and physically preparing for the one of the biggest days of my life…getting my stomach removed.  I had done a tone of research and felt pretty well prepared for what was to come.  I was about 45 pounds heavier than I am currently.  We were all saying farewell to my stomach with lots of food, drink, and parties.  Sorry, I digress. 

Anyway, so far I’ve had 2 iron infusing over the last 11 months for low iron and iron store levels.  Since they aren’t improving too much I am going to start taking a larger iron supplement.  Which is totally fine.  Obviously I was hoping my body would level itself out so I wouldn’t have to take more, but it’s fine.  Maybe my body just needs more time to adjust to absorbing iron in this new way.  Or maybe I’ll be taking a higher dose of iron for the rest of my life.  Either way, it is what it is and it’s no biggie.  When I look back to when I go the iron infusions at the NIH, I remember how amazing I felt afterward.  Like, I didn’t realize how fatigued I was until I had so much energy and stamina after the infusing.  So cross your fingers that increasing my oral intake of iron supplements with fix this problem.  So this year can start off with more energy, productivity, and less winded play sessions with the kiddos.  

I am preparing to go back to Maryland for my 1 year post op visit.  My 7 year old daughter has been begging me to go with me since the day I got back from surgery.  She really wants to see the hospital, Maryland, Washington DC, and go on another plane ride.  I love that she wants to travel.  So we are planning on going in March during her spring break so she doesn’t have to miss any school.  Another positive to that is that cherry blossom season usually starts mid march!  Which I’m super stoked about.  When I was there in March last year for my month post op visit, I was not feeling well or in any shape to go explore and see the beautiful trees unfortunately.  So hopefully we get at least a glimpse of them this visit.  It’s also kind of hit or miss for the weather in March.  It could be really cold still or it could be really nice.  My daughter loves the cold so either way will be fun.  

I’ve also learned that the NIH has started doing breast surveillance for their CDH1 patients as we have an increased risk of getting lobular breast cancer also.  Which is amazing because this means I can get my yearly breast MRI done while I’m there instead of paying $1200 out of pocket at home to do it.  I have yet to decide 100% what I’m going to do about this increased breast cancer risk.  Initially when I first learned I had this CDH1 mutation I thought it was a no brainer…lets get rid of them and have reconstruction.  But when you really get into the details of it, it’s a much harder decision.  There are so many factors that come into play.  Also, after having the prophylactic gastrectomy it’s difficult to fathom going through another major surgery.  I’m definitely not planning on doing anything surgical this year and will just do my MRI and mammogram for screening.  Hopefully by the end of the year I will have come to a more concrete decision.  As for now, I’m still adjusting to this new life and body and hope to do some more traveling this year.  

Until next time…

2019 Reflection

As the year comes to an end, I’ve found myself reflecting. Reflecting on things I’d like to do differently next year.  Reflecting on things I’ve loved about this year.  Reflecting on decisions that have been made this year.  Just really bringing a close to this year to make room for the year ahead. I don’t know that I really believe in New Years resolutions for a couple of reasons. One, I always feel like a failure if I don’t accomplish them. It’s just so much pressure.  Two, as the year comes to an end I hear people scrambling to get their resolution completed. I.E. my husband deciding to learn to ride a unicycle. Btw, this has been a resolution of his for several years and he still has yet to do it. Which, again, doesn’t make him a failure...it’s just what it is. The new year is just a continuation of life. And living our best life. I choose to look at it more like a friendly reminder of the things I’d like to accomplish and a perfect time to reflect on the previous year.

And as I reflect, I’m reminded I’m not perfect. Nor has this last year been perfect. There have been many ups and many downs.  Which is life, right?  I have a tendency to really focus on the negative and dwell a bit. I’m not proud of this. And I am working on it. Learning to ride the wave of life as it is. Be thankful and grateful for all the ups and even the downs. Life would be so boring if it was great all the time. Haha. I tell myself during a low while trying to convince myself of that.  This year has be challenging and stressful to say the least.  So as I learn to give myself and my family grace, I choose to focus on the positives this year has brought. 

I no longer have to stress or worry that I will get this horrendous stomach cancer.  My body is adjusting so well to life without a stomach. It’s still so crazy to think about.  I have been able to spend an unmeasurable amount of time with the people I love most in this world, my hubby and kiddos.  I have learned so much about myself and my family on this crazy journey.  I am stronger and more patient than I have ever known.  It’s very difficult to show love and compassion when you’re not feeling your best.  My kiddos understand and comprehend more than we give them credit for.  They are truly thoughtful, caring and empathetic.  My husband is amazing, which is nothing new.  But he’s really stepped up in ways I could have never imagined.  And I’ve solidified that an untidy house drives new insane, I never want to be a stay at home mom, I’m stubborn as hell, and...I am so lucky in this life. 

So cheers to 2020.  It’s going to be an amazing year.  So many things to look forward too. 

Reflux...ugh

Our Christmas get together with hubby’s family last night was so much fun. Just good people, good food, good entertainment, and good fun. It’s always fun to see those we only see once a year.  Hearing how life is going and what they are up to. And then of course it’s awesome spending time with the ones we see more often.  Kiddos running around. 2 year old twins keeps everybody entertained at some point in the evening.

As far as food goes, I found it very difficult to eat as frequently as I should.  Of course the food was delicious and I wish I could have eaten more. In hindsight I wish I would have made myself 2 plates. One for the moment everybody was eating. And the second for a couple of hours later.  I think that would have helped.  My saving grace was drinking milk before leaving my mother in laws house and then eating some pecans and pretzels in the car on the way home.  Still went to bed feeling like I didn’t eat enough.

And late last night I woke up with reflux. Ugh. This happens every so often. Usually when I catch myself lying flat without realizing it. But this was not the case this time.  Maybe it was all the rich food my body is quite used to anymore. Maybe it was I didn’t eat right before bed like normally do. I’m convinced that eating before bed helps keep the bile at bay and prevents it from working it’s way up to my esophagus.  I find this interesting because a lot of stomachless people find eating to close to bedtime causes the reflux.  Anyway, I felt miserable most of the day. Since this isn’t avid reflux (from stomach acid), it is bile reflux. Which apparently is more alkaline.  So all the antacids you think to use/take when having heart burn don’t work at all. I actually think they make it worse. So I try the things other stomachless people have suggested. Such as Diet Coke, orange juice, or anything that is on the acidic side.  It seems these things work sometimes, but then other times not so much. And today was one of those times they didn’t do much for me.  So I just tried to take in what I could manage slowly all day while hanging out with the kiddos. We literally just played with new toys, played with the dogs, went for a walk. I don’t think I even got dressed until FSR into the afternoon. 

Fingers crossed tomorrow is a better day. Especially since it’s a work day. G’Night

Christmas is next week!

Christmas is next week!  And nope, I’m not ready. Christmas crafts are still sprinkled throughout the house. Although, we have made progress on all of them. Still waiting for several gifts to arrive on our doorstep and have a few last minute gifts to find.  But we’re getting there and I am not stressed about it AT ALL.  Managing my time wisely and rolling with the punches. We do have my daughters teacher gifts wrapped and ready to go.  Thanks goodness, since the last day of school before break is tomorrow.  So that’s a plus. 

The kiddos are super excited to see what Santa will bring them and to be spending so much time with loved ones. 

Eating is going great. I’m feeling great overall.  It’s so much easier to stay hydrated in the colder winter months.  I feel my energy improving each and every week, which is why I keep telling myself I need to start exercising again. I have been very lazy as far as that goes.  Even just some light yoga day to day would help my body, mind and soul so much. So I’m not entirely sure why I’ve been putting it off.  I guess I’m just having trouble prioritizing it again.  K. I’m going to get through the holidays and I’m going to start again.