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. 

THANKSGIVING

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

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

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

Time is going too fast

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

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

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

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

HALLOWEEN IS HERE

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

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

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