NIH visit

So, here we are finally home from our trip to Maryland.  I am so over joyed by seeing the kiddos again and being able to give them lots of hugs and kisses.  Emma doesn't want anything to do with it, but Owen is soaking it all up.  I swear they each grew 2 inches since we've been gone.  And coming home to a clean house with clean sheets was icing on the cake!  My mother-in-law is pretty amazing.   Anyway, I want to fill you in on the whole trip, so let’s start from the beginning and bear with me...this is a long post.

Tuesday was a long day of traveling.  Got to the airport and checked through security with no problems. One minor hiccup as we were separating our luggage out to go through security I realized I had forgotten all my liquid toiletries. They were sitting right on my bathroom counter before we left and I just breezed right over them when putting last minute items in our bag. Doh! 🤦🏽‍♀️  So flight went well and we actually landed early, so we had plenty of time to get to the shuttle that would take us to NIH.  Everything is so green!!  Yes, it’s humid but I actually like it.  It feels so good on my skin and lungs! Went through security here at NIH and then on to admissions. We didn’t arrive to the clinical center (the hospital) until after 6pm, so it was a bit of a ghost town.

Day 1: Travel Day

Tuesday was a long day of traveling.  Got to the airport and checked through security with no problems. One minor hiccup as we were separating our luggage out to go through security I realized I had forgotten all my liquid toiletries. They were sitting right on my bathroom counter before we left and I just breezed right over them when putting last minute items in our bag. Doh! 🤦🏽‍♀️  So flight went well and we actually landed early, so we had plenty of time to get to the shuttle that would take us to NIH.  Everything is so green!!  Yes, it’s humid but I actually like it.  It feels so good on my skin and lungs! Went through security here at NIH and then on to admissions. We didn’t arrive to the clinical center (the hospital) until after 6pm, so it was a bit of a ghost town.  Even though it is a hospital, and a 24 hr hospital at that, almost everything shuts down at a certain time.  We got through admissions pretty quickly and went up to my room where I met my nurse.  She was nice but a little spacey and didn’t seem to know quite a bit of what I think she should have known given she had worked there for 2 years.  She was very interested that I too am a nurse and kept asking about my job and what the cost of living is in AZ as she’s been thinking about moving.  Also, the surgery fellow came in to discuss the plan of action for the evening and for tomorrow morning.  He stated I should get labs drawn, a chest X-ray and an EKG done that evening so my pre-admission testing the following morning would go more smoothly.  I guess all these tests are standard procedure before anesthesia at NIH.  Keep in mind this was after 7:30 at night at this point. 

Just one little example of my nurse’s spaciness is when I needed the chest X-ray. First, she decided to draw labs so she got all the supplies and had another nurse help her come draw them from me.  After this, she walked me down to the radiology department, which also closed down at a certain hour.  She said ‘oh, there is nobody here’  There was a very obvious sign on the wall that said to call the radiology tech on call by dialing such and such number.  So, my nurse did.  The X-ray tech came out and said ‘okay just for the future, you are supposed to call me before you bring a patient down’.  My nurse said ‘oh, okay, I didn’t know that’  It was just a very weird exchange.  So the radiology tech escorts me to the X-ray room.  She starts to tell me to put a gown on and such when she realized she needed to check the order for the X-ray.  So she walked away for a brief moment and came back to tell me the X-ray isn’t ordered!!  OMG!  So she calls my nurse on the phone who said she will make sure the order is in and then call back.  In the meantime the X-ray tech remembered to check my pregnancy test results and noted there was no result for such test.  She calls the nurse back who then states she’s working on it and will call back.  We probably sat there and chatted for 20 minutes before the nurse called and I had to go back to my room and NOT get the X-ray at that time.  I know more about that woman than I probably care to.  So, it was probably 9:30 at this point.  On the way back to my room I met a new facebook friend who had her prophylactic total gastrectomy 5 years ago and is doing great.  She came back to my room and we chatted for some time.  It’s so nice to talk with somebody who has been there and done it already and who can give advice and little tips and tricks that work for her (even if they won’t work me).  She suggests carrying glucose tablets at all times just in case my blood sugar drops too low, which totally makes sense.  She also recommends gaining as much weight as possible before surgery.  As you know, I don't really agree with this.  I think it's got to be harder on you body to lose a larger amount of body weight as opposed to staying similar weight and losing less poundage.  Anyway, another new facebook friend stopped in to say hello as well.  She is more on my timeline as she just found out recently about CDH1 and that she’s positive for the mutation.  So there we were in my hospital room at 10pm just chatting it up and having a PARTAY.  haha.  It was very surreal and awesome at the same time.   So at about 10:45 the respiratory therapist comes in my room to do my EKG and then Matt and I were able to head to the Safra Family Lodge at NIH to sleep for the night.  The NIH is kind of weird that way.  They ‘admit’ you but then let you go out on pass.  Which is what Matt and I were so looking forward too so we could explore the D.C. area.

Day 2: GI consult day

Neither Matt or I slept very good the night prior.  Probably just from traveling, the hype of being here, and not being in our own bed.  The room in the lodge is very small and has 2 queen size beds, so Matt and I slept in separate beds to ensure we got a good night sleep.  Which like I said we did not.  So, got to my pre-anesthesia appointment no problems.  Thanks to the handy dandy NIH Take Me There app that gives you directions how to get places within NIH using GPS.  Seriously don’t know we would have found it without this app.  There were lots of very long weird hallways.  This appointment went well and I started feeling a bit better about this NIH place.  These people were more organized and put together.  So, I get back to my room to meet with the gastroenterologist, Dr Curtin, who was 3 hours late as he got stuck in the OR.  Typical medical field.  Ugh.  In the meantime we were able to meet the dietician who had tons of information for pre and post surgery.  She will be a much needed resource as my surgery date draws near.  We were also able to meet the research nurse, Maureen, who is outstanding!  We sat and chatted with her a long while.  She feels like a long lost friend.  Anyway, back to Dr Curtin, I really liked him and felt totally comfortable having an EGD with gastric mapping and biopsies.  Gastric mapping is what he calls the procedure because he takes nearly 100 biopsies to literally kind of map out your stomach.  He was very thankful I had signed up for this study as he’s confident this will help in his research.  Hell, what’s another 85ish biopsies?After Dr Curtin left we had to wait to make sure my ‘out on pass’ order was put in for the day.  So it was late afternoon at that point but Matt and I still felt up for exploring so we headed to downtown Bethesda.  It was a nice humid walk to get there, probably about 1.5 miles there.  Very cute town with lots of yummy restaurants.  We ate a place called Silver Diner.  The best way I can describe it is as a hipster modern diner.  The atmosphere was great and the food was amazing!  Very comfort foodie but done in such a modern hip way.  Would definitely recommend it!  Dessert wasn’t that great.  Matt ordered the chocolate cake a la mode and it was very dry and grainy.  After dinner we walked around a bit and got poured on by the rain.  Haha.  We’re used to monsoons in Phoenix so we expected it to not last long, but it wouldn’t stop!  Haha.  We raced to the nearest Metro station and got on our first D.C. Metro.  Kind of creepy at first as you are completely underground.  But it was easy peasy to get back to NIH where our lodge was.

Day 3: Biopsy Day - Also Matt’s Birthday

I got transported from my room to the pre-op holding area.  Again, lots of long weird hallways.  Kind of reminds me of the hospital I used to work at in Tucson, but much larger.  Anyway, my peri-operative experience was very pleasant and again reassuring.  I specifically asked the anesthesiologist to not give me Versed as I didn’t want to be sleepy the rest of the day because Matt and I wanted to get out and about again.  He was very funny and pretty quirky.  They called him Dr Mo because he works with kiddos and that’s easy for kids to say.  He was convinced he and I are twins because we’re both left handed, we both have mild asthma as well as a couple other mild health problems.  Then he laughed and said “we are like the same person…except i don’t have a CDH1 mutation…at least I don’t think I do”  haha  Anyway, very funny guy who calmed my nerves a bit.  I can say equally nice things about the OR team and the PACU nurse.  Like I said, the whole experience was great and made me realize I do want to be there for surgery.  So, went back to my room for a couple of hours before we left again on pass.  I felt great. So great that we took the Metro to D.C., walked to Georgetown and went kayaking.  Hell, it’s Matt’s birthday and I wanted him to have a fun day.  We did get a double kayak just in case I wasn’t feeling up for rowing.  And I left my lifejacket on the entire time!  Just incase we tipped and I couldn’t swim because of being incapacitated from the propofol (which doesn’t last that long anyway).  It was so nice to be on the water and just enjoy the scenery.  I was still feeling great, just a little soreness in my stomach and throat. After kayaking we made a small trek to downtown Georgetown and had an amazing dinner at El Centro D.F.  The salsa…OMG!  They roast the tomatoes overnight to give the salsa such a smokey flavor.  We loved it.  And the tacos were to die for!  After dinner, we found a little ice cream shop and sat with ice cream at the park there in Georgetown and just people watched.  Then made the long trek back to NIH to sleep.

Day 4: Surgeon consult day

The research nurse assured me yesterday that I didn’t need to be back to my room before 9 or 9:30.  She insisted even when I told her I would rather be early and have to wait for them to get to my room.  Well, Matt and I were headed out the lodge door when she called asking if we were on our way.  So, in the rain we ran up the hill to the hospital.  haha.  I don’t like making other people wait for me.  Anyway, we sat down in my room and talked about surgery.  Dr Davis answered all my questions.  He was very open and honest about everything I wanted to know.  One really cool thing he said that I had never thought of before is this: 

“Here at the NIH we have a unique situation where on this unit I have people with very advanced stomach cancer who don’t have CDH1, and then I have people like you who are very healthy, but have CDH1.  You probably have signet cells in your stomach as we speak, but they aren’t developing into full blown cancer for whatever reason.  And we know the person with advanced stage stomach cancer definitely has signet cells.  Here because I have you and I have them, my job is to bridge the gap and make discoveries.  That’s what we do here at NIH.  This is the model that has been used time and time again here at NIH to find treatments and cures for many cancers.” 

I love the idea that me being part of this study will help him and his team do the research they need to find something better for us CDH1 patients.  So, now we wait for the biopsies from the EGD to come back (which can take up to 2 weeks) to determine timing for the prophylactic total gastrectomy. 

After meeting with him and the research nurse we had to wait another almost 2 hours to get let out on pass again.  I guess the doctors hadn’t been putting the order in correctly so the same order could be used over and over again.  Go figure.  haha 

Anyway, after we broke out, we headed to DC again.  First, we went to the Smithsonian Museum of Natural History.  This place is gigantic!!  I feel we could have easily spent the entire day there.  Let me just say the hope diamond is very underwhelming.  From there we wandered around the mall a bit and got to see the Lincoln Memorial.  This was my favorite part.  I just wish there weren’t so many people there.  A friend suggested going at night, but we just didn’t have the energy for that.

Day 5: Heading Home

We slept in today!!  Felt so good to sleep in without hurrying to an appointment.  After checking out of the lodge we met up with a friend of mine from gradeschool/highschool who I haven’t seen since college.  She has been so nice and caring during this trip checking in on us to make sure we’re getting around okay and everything’s going well.  So she picked us up from NIH and we went to brunch at a place called Summer House.  Great atmosphere with great music and of course the food was amazing.  Enjoyed a mimosa and caught up with this old friend.  That was very nice.  Then off to the Metro to get to Union Station to catch an Amtrak to the airport.  This was a bit stressful but oh my goodness was Union station beautiful!!  I wish we had more time to spend there.  Another time.  Another time.  Then the Amtrak to the airport was a neat experience.  Neither of us had every been on a train like that.  I kind of felt like I was traveling back in time a bit.  We made it to the airport with no problems and had more than enough time to walk the airport and get a couple snacks before the flight.  

I am so glad we made this trip even in these unfortunate circumstances.  I learned a lot.  I’ve been reassured by many many people that I can and will live a completely healthy new normal life after getting my stomach removed.  I’ve been told this several times before, but it truly does help to hear it over and over again.  I want to thank each and every one of you for caring enough to read this entire blog post and for being such an incredible support system 

liquid Xanax update

Yesterday’s post was extremely difficult for me to publish as I’m a very private person and I like to hide my weaknesses and insecurities.  So I just want to give a quick update.

I’ve felt much more at ease today. I’m telling you the liquid Xanax is a life saver. Haha. But also late this morning I spoke to the research nurse specialist at NIH who really calmed my nerves just by saying hello. She’s just one of those people who have a way about them.  But she also told me I can probably get a pass to sleep at the lodge with Matt as opposed to the hospital.  I’m in the healthcare field,  the worst patient on earth, and don’t like sleeping in hospitals.  I stayed in the hospital less than 24 hours when each of my kids were born. In fact, they wanted to keep us 48 hours when my son was born, but I was able to convince them otherwise. I digress. This brings me to another calming point of my day.  A gal I just recently met on Facebook had her PTG at NIH 5 years ago and is there right now for testing because of abdominal pain. Anyway, she texted me this evening ‘Omg this place is awesome! I have been coming here 5 yrs and i wish i could come here for everything lol’ and ‘well this hospital doesn’t feel like a hospital so i think you will feel happy once your here and get to see it’

So I’m feeling pretty good at the moment. It’s amazing what opening up and being vulnerable can do for your soul. Had I not done so I probably would have started down the negative spiral my mind occasionally takes me down.  Also, got to spend lots of really good quality time with the kiddos today.  I have the best kids. ❤️  

Anyway, good night

Liquid Xanax

My travel related stress has officially begun. We don’t travel much and now I remember why. I love the idea of traveling and exploring, but it really stresses me out every time.  Just the logistics of packing what’s appropriate, and getting to and from, and actually trying to enjoy myself all tend to wear on me. Obviously if we did travel more I would get more used to it and it probably wouldn’t be as stressful.  To give you some perspective Matt and I haven’t been on an airplane for 8 years!  The last time was when we got married 8 years ago in Hawaii.  That’s crazy considering as a child I flew all the time to visit family.  

So we don’t leave until Tuesday but I asked Matt to pack with me last night so I could settle down a bit about all our stuff fitting into 2 backpacks and a small toiletry bag. We’re going to be gone 4 nights and I can’t see taking a ton of luggage especially when we will probably be doing public transportation to get to and from the airport.  Which I started stressing about a bit a few weeks ago. So I did my research and it doesn’t look to daunting. I think we will be fine. 

Then, late last night I found out that I will probably have to sleep at the hospital while Matt sleeps at the NIH lodge, which I’m not too excited about. I know it sounds so weird, but I don’t like being alone in unfamiliar places.  I feel like such a baby saying that, but I have always been that way.  I remember my first night at my dorm room in college by myself.  I cried as soon as my mom left.  And then, probably just like now, it was more about the unknown of what’s to come.  I’ve done my fair share of preparation both mentally and physically for this short trip, but there are still so many unknowns.  In reality, in just a few short days all of the unknowns with no longer be unknown.  I just need to keep remembering that and take everything in stride and go with the flow. I’m trying to keep a positive attitude especially if this is the worst trhing I need to worry about, but I’m struggling a bit here. 

And then this morning I go to the community center to attend my weekly hip hop class, and it was cancelled. Doh. I just love this hip hop class and felt I really needed it today.  Instead of leaving, I decided to get on a treadmill and ran 2.5 miles.  Which totally helped. All the breathing and sweating that happens when you run can really help blow off some steam and anxiety.  So I’m feeling a bit better at the moment, but definitely plan on using my liquid Xanax for the next couple of days.  For those of you who don’t know, my liquid Xanax is a blend of essential oils that a friend made for me a while back (you know who you are 😉) and it actually helps a ton when feeling on edge.

I LOVE FOOD!

I consider myself a pretty healthy person and make healthy food choices most of the time.  Eating healthy feels good. It makes me feel good. Preparing healthy meals for my family is often a priority for me and makes them feel good.  Even though my two little ones often protest 😜.  But I also love junk food and sweets.  And because I have no idea how my body is going to react to having no stomach I am really enjoying all foods at the moment. I am trying not to be gluttonous, but it feels so good to have a full tummy.  Will I ever have that feeling after my PTG (prophylactic total gastrectomy)?  People tell me my portions will increase over time and eventually I’ll be eating pretty normal amounts, but again I don’t know how my body is going to react. I’m walking a fine line right now of not wanting to lose weight before surgery because there will be enough of that after but also not wanting to gain weight because I’m happy with where I am right now knowing I will have significant weight loss after surgery.  Timing kind of plays a roll as well. If I knew I was having surgery next month I wouldn’t be so cautious of the weight issue. However, that is not my plan. Matt and I are traveling to Maryland to meet the team at NIH for consults, so I’m curious what their opinion is for timing of the PTG.  I’m pretty excited to go meet everybody and also to explore the DC area.  Neither of us have been there before and figured we might as well do as much sight seeing as possible while there.  And will probably eat way too much really yummy food. I’m sure my relationship with food is going to be forever changed which I’m totally nervous about.  At 33 years of age I felt I was actually getting a grasp on a healthy relationship with food and how it affects my body.  I guess I’ll just continue learning that but in a new way. The PTG kind of forces a healthy diet and lifestyle, at least at first. 

Okay, I think I’m officially rambling here. Thanks for listening. 

Breast MRI Wonderfulness

My first breast MRI was originally scheduled for May 14, 2018.  CDH1 also increases my risk of breast cancer. So I’m supposed to get a breast MRI and mammogram every 6 months alternating. So I showed up all ready to go for my appointment and they told me they wanted to wait until I was within 7-14 days of my menstrual cycle.  Ugh, so frustrating.   Why didn't the scheduler address this when I was making my appointment?  Anyway, so I called them as soon as I started my period and had my appointment set up for yesterday, May 31, 2018.  I was dropping the kiddos off at their grandma’s house yesterday morning when the Breast Health Center called me to tell me the breast MRI was down and not working.  OMG, this whole breast MRI experience has not gone well so far.  I was very upset when I heard this as I was supposed to work the next day and by next week I will be out of my 14 day window to have this done after my period.  I worked it out with my supervisor that I could leave for a few hours to get this done, which is amazing.  I have had nothing but tons of support from my job from day 1 of being diagnosed with CDH1, which I am so lucky and thankful for. 

Okay, so fast forward to today.  Dropped the kiddos off at daycare and went to work as per usual.  Actually kept spacing that I had my appointment at 2pm.  Okay, so got to my appointment with plenty of time to spare.  Let me tell you this Breast Health and Wellness Center is beautiful.  Instead of the harsh florescent lights, they have chandeliers and diffuse lighting in the waiting area.  The people are so friendly and understanding.  So after waiting for quite some time, the gal comes out to get me.  She tells me the last patient is just finishing up on the table but she is going to go over my MRI questionairre while the patient finishes up.  She takes me to this very inviting more secluded waiting area that had a couple comfy couches and big oversized chairs with an artificial fireplace.   Which I was surprised to find in June in Phoenix, AZ.  But the rest of the place was so cold that it actually felt quite nice.  As I sat down another gal popped her head in and introduced herself as the scheduler I have spoken to many times with the complications of getting this MRI done.  She was very sweet and kind, gave me a big hug and handed me Starbucks gift card, which was so thoughtful.  She felt to bad about the issues I was having and the not so pleasant experience I had undergone with all of this.  Which, honestly it wasn’t that bad, but a bit frustrating.  So sweet of her.  

Okay, so the MRI tech went through her questionnaire and then left me to go get previous patient out of the MRI.  She came back, got me changed into a robe, started my IV, and got me on the table.  I didn’t know until recently that a breast MRI is a specific type of MRI machine that is only for breast MRIs.  Makes sense, right?  So you lay on your tummy with your boobs hanging down into an area specifically made for that, she pushed some part in a bit to make sure the girls stayed still during imaging.  My arms were all the way above my head and my face was resting on the face cushion similar to that of the ones when you get a massage.  So, not to uncomfortable.  She put some headphones on with Justin Timberlake Pandora playing, as requested. ;-) She gives me a stress ball to squeeze if I am absolutely not able to continue on with the experience, then leaves the room.  She was amazing at explaining everything and making sure I was comfortable.  Then.  All of a sudden.  The loud noises began.  Haha.  It wasn’t quite that dramatic as I knew what to expect, and the first couple of minutes were annoying and loud, but then was able to drown it out a bit.  I kept reminding myself to breath, and don’t freak out, and don’t scratch that itch.   Oh, and the contrast going into my IV, holy moly does that burn.  I hear people say that all the time, but never really know what they’re talking about.  haha.  But then that was over and it was fine.  The MRI  was probably the longest 25minutes of my life but I got through it.  Then, I got up and I realized how unfordable I was.  You know when you stay in one position too long and then go to move and you are super stiff.  That’s how my arms, chest, and tummy felt.  Wasn’t expecting that at all.  

So, I’m glad it’s done and over with before our trip to NIH in a couple of weeks.  A bit anxious to get results but keep reminding myself to stay in the moment and hope for the best.

This was far too much detail about my a silly beast MRI.  In the moment I had an overwhelming need to really notice how I was feeling and document it all.  So thanks for listening and maybe with will help with somebodies anxiety with having a breast MRI in the future.