NIH 1 year follow up

 Three months ago I sat down and wrote a blog post. But I never actually posted it.  In the moment I felt a bit crazy.  I got self conscious and started worrying about what people would think of me.  But today, I’m not concerned about it.  I am transparent and honest and I am proud that I’ve found ways to help my body when nobody can really figure out the answers.  So I’ve back posted 2 blogs.  And here goes a current one.

I am currently in an airplane on my way home from Maryland. My 1 year post op follow up was long over due.  It’s actually been 18 months. That’s so hard to believe.  It’s been a rollercoaster to say the least. I’m taking every precaution I can to stay safe during COVID. I have a mask with a filter that is better than N95s, I wipe down all surfaces I’m going to touch. And I have hand sanitizer easily accessible of course. Anyway, I felt the need to mention all of the above because to be completely honest with you I was a bit worried going into the travel. Luckily, the flight to Maryland was half empty and I only had 2 people even remotely close to me. But now I sit in a package of sardines for the flight home.  I haven’t heard anybody cough or sneeze. And of course we all have our masks on. 

Okay, back to the NIH visit. It was short and sweet with lab work, DEXA scan, and chat with Dr Davis and my dietician.  Lab work looks good. Iron levels are still slowly increasing. So they want me to keep up with my iron regimen. DEXA scan shows a slight decrease in density compared to my scan last year, but still well within normal range. I feel so good about that. I was a bit paranoid as I was an idiot right after my gastrectomy.  I knew I needed to take Calcium Citrate multiple times a day.  But I found the huge pills difficult to take and to remember 4 times a day was also difficult. So I found some chewable ones. Well, three months later when I go to reorder them I realize I ordered a different type of calcium!  Doh!!  I felt so stupid. Anyway, so bone density scan all good. 

I spoke with Dr Davis about my gallbladder vs other cause of the pain I’ve been having.  We both agree that we don’t think it’s a gallbladder thing. I explained some of the osteopathic manipulation I’ve been doing and he seems a bit intrigued. He said he has about a handful of patients that are having very similar experiences.  He asked that I keep him in the loop about it all because he would love to start reading up on it and be able to start recommending something similar to other patients if they have it available.

I won’t bore you with all the details but I did have the pain again about a week ago while my hubby and I were on an epic road trip for our 10 year anniversary.  Thankfully it only lasted less than an hour or so. As soon as it started I laid flat on my belly on a heating pad. And eventually was able to get comfortable enough to fall asleep. 🤷🏻‍♀️

Just rolling with the process.  And hopefully I don’t actually go crazy while doing so. Haha. 

 

Feel Hungover

 Osteopathic doctor warned me to drink lots of water and get lots of rest after that first manipulation appointment. Well, yesterday I worked and felt great the whole day. Today I woke up and feel like I have the worst hangover I’ve ever had.  The headache. The nausea.  Just feel like I’ve been run over by a semi truck. So in my mind right now I’m thinking between the osteopathic manipulation and the accupressure, something is changing in my body.  

Stay tuned...

Osteopath

 A couple weeks have gone by since my visit to the hospital.  I’ve traveled through quite the mix of emotions during that time.  The most prominent immediately after leaving the hospital was frustration.  Frustration that nobody knows what to make of my situation.  Frustration toward myself that I should communicate better.  Frustration that my family feels helpless.  And so many other things.  Even though I had these intense feelings of frustration I kept telling myself to think positive.  I know that medicine is a science and it is not black and white.  I know that my knew body can be a challenge at times.  I’ve always believed things happen for a reason - even shitty stuff happens for a reason.  We might not always know that reason in the moment and that can be frustrating.

 I have a strong tendency to worry.  When this pain happens, I worry about what is causing it.  I worry if I will need another surgery.  I worry about how much the medical bills are going to be.  I worry that it is going to happen again.  I worry about how these situations are going to affect my kids and the way they see the world or how they cope.  My mind just goes crazy with worry.  And I completely understand that worrying is not going to accomplish anything.  And I completely believe it causes more grief than is necessary.  I also believe the mind is a very powerful thing and such worrying can cause more physical ailments.  Because of this, I am constantly reminding myself not to worry.  I’m not a religious person but like I said I believe things happen for a reason and I believe in a higher power.  There is no need to worry.  

At this moment, we don’t know what is causing the pain, and that is okay.  Maybe we aren’t supposed to know right now.  What does it really matter if I need another surgery.  Is that really the worst thing that can happen?  I take care of kiddos everyday who have had countless amount of surgeries.  Poor kiddos.  And they have the best attitudes.  The cost of medical bills can be super frustrating, but what does worrying about it do.  Nothing.  And we are so fortunate to have good steady jobs.  And the ability to save and be prepared for these situations.  And what if it happens again?  Well, we will deal with it just like we have before.  And maybe that time will be the time somebody figures something out.  And for my kids.  They are resilient.  They are smart.  They will see my strength, courage, positivity, and grace though these situations.  It is so extremely freeing to let go of the things you cannot control.  No matter what happens, life will go on and we will get through it and will be stronger for it.

With all of that said I still find it important to be an advocate for myself and to research and talk with people in similar situations.  I’ve done some connecting with other people who have my genetic mutation and have had their stomach removed who also have had this weird abdominal pain.  Since doing so, I’ve remembered that my surgeon told me it is very common to have gallbladder issues after the removal of your stomach, but more so if you’re really over weight to begin with. If that’s the case you usually lose a larger amount of weight is a very short amount of time. Which can cause issues with your gallbladder. So he usually just takes the gallbladder out with the stomach in those patients.  At the time I was not a candidate for that. At least not on his recommendation.  And I agreed with him. I’d like to keep as many of my organs for a long as I possibly can.  But now I’m wondering if this is my issue. My most recent CT scan looks okay, but I’m wondering if I should pursue more imaging to rule my gallbladder out.  So while in the hospital a couple of weeks, I spoke to the hospitalist about possibly working up my gallbladder. He didn’t think it was a bad idea.  It would be good to rule out so we know for sure it’s not that. Cause that’s what we do in medicine. We make a list of all the things it could be so we can go through that list and cross the items off one by one. So he recommended I follow up with my PCP for pursuing the gallbladder as a cause to my pain.  Anyway, the hospitalist is actually a DO and practices osteopathic medicine as well.  I actually had an appointment with him today.   He spent over an hour with me.  He explained osteopathic medicine with info than I could ever absorb about our lymphatic system and the entire time doing osteopathic manipulative medicine with me today.  I’m still not entirely sure what exactly that means, but he had a lot of insight and spent a very long time with me working on fascia release in my abdomen, and lymphatic drainage.  I will definitely be going back.

My chiropractor also came to came for another acupressure session.  I know I’ve mentioned him before but can’t remember how in depth I went about acupressure and what he does.  Acupressure is very much like accupuncture, but there are no needles involved.  It is all based on the knowledge that we as humans are made up of energy. Just like everything else.  And sometimes things in our bodies or things that happen to our bodies cause a block in the flow of that energy.  The accupressure or accupuncture helps to relieve that blockage so the energy can flow more freely again. When we have blocked energy within our bodies it can cause symptoms like pain or nausea.  Way back shortly after having my stomach removed I was super nauseated. A lot of the time. I had more days of nausea than I had with no nausea.  Dr Berg came to see if there was anything he could do to help me. And I know this all sounds super hoaxie and totally hippie but I was so surprised at the sensations I was feeling as he was doing his work to release the blocked energy in and around my abdomen.  I remember after that first session feeling a world of difference for the better. I had a bit more energy.  I had a appetite and the nausea was markedly improved. I would go into more detail about the sensations I was feeling but I think you all would really think I’ve gone bat shit crazy. So let’s just leave it at that for now.  He did a lot of educating me on what he does and how the energy flows in our bodies and what helps with energy flow and what can cause blockages of that energy.  And in the several sessions we’ve had since that first day we’ve chatted more and more about it all including grounding our bodies to earth and earthing and all sorts of non western thinking.  Over time I’ve come to believe that this man is a true healer. He has a gift within his hands and I feel so fortunate to have crossed paths with him.  

But let’s back track for a minute to last week.  My chiropractor came, which was about a week after I was in the hospital.  I just felt he could help me. So he came and went and I felt a tad better in general. As the next week went by I just felt like there was a spot in my abdomen that just felt congested and stuck. Not really sure how else to describe it.  I made an appointment for today to see if we could relieve that feeling I’ve been having.  As he did his thing and felt around my belly he located several spots that caused discomfort on palpation.  Long story short he was able to help those spots.  To the point where the feeling of hollowness where my stomach used to be has changed.  The best way I can find to describe the feeling is full. It no longer feels there is a void there. 

So between the acupressure and the osteopathic manipulations, I think we might be onto something.

Stay tuned...

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…