ONE YEAR!!

Easter Sunday is my one year anniversary of having my stomach removed.  It’s really hard to believe it’s been a year already.  I remember how surprised I was when I first was diagnosed with the CDH1 gene mutation that put me at such high risk for stomach cancer. As I was home recovering from my mastectomy, I read countless blogs of people who had complications and sometimes it would get pretty depressing.  When I started this blog, I had no idea how things would turn out for me.  I remember a few weeks before surgery, I was having lunch with my friend, Lisa, saying to her this may be the last slice of pizza I would ever have.   I’m happy to tell you that I can now eat half a pizza at once with no problems.  In fact, there is nothing I can’t eat now.  I’ve adapted to my new lifestyle and I’m back to my life of hiking and backpacking.   This is a picture of me just two weeks ago when I went snowshoeing during my spring break.

 

For those of you who have been recently diagnosed with the CDH1 gene mutation, please don’t hesitate to reach out to me if you have any questions or need support.   I’m a living proof there is life after surgery.  Everyone’s journey is different, but for me, I  knew for sure I had turned the corner in December, which was about 9 months out.

This whole experience has made me more appreciative of the little things in life.  Each new morning means a new beginning, a new struggle, a new endeavor, but with the Lord by our side we can overcome any challenges and turn obstacles into stepping stones.   It’s hard to understand our hardships and struggles sometimes, but I believe we all have a purpose in our life…. to be a shining light of love and hope for others.

Thank you again for all my family, friends, and strangers who prayed for me.  Happy Easter everyone!

 

Pink October

Reflecting over the past year

It’s that time of year again – Breast Cancer Awareness month.   Ironically, it was a year ago this Friday that I woke up early, with anticipation of my mastectomy that day.  I decided to start my morning with a quiet walk in my neighborhood.    To my surprise, I was greeted with a stunning sunrise of pink and yellow and I lost myself in the silent beauty.

We’ve all been touched by breast cancer in some way.   It hit home pretty hard for me when my best friend, Lara Waddle, was diagnosed 5 years ago.   She’s been my biggest cheerleader after I was diagnosed a year ago.   She’s checked on me often, given helpful advice, and just been there for me.   I’m in awe at how bravely she’s fought, especially now with metastatic breast cancer.   Through it all, she keeps a smile on her face and lives her life so courageously.   I could only hope to have the kind of determination and strength she exhibits.   She lets her light shine….. and radiates love and joy.   She’s my hero.     If you’re reading this, please add her name to your prayer list!

Speaking of heroes,  I want to tell you about my friend, Robin Cole.   Robin and I have been friends for a few years.  Remarkably,  she was diagnosed with breast cancer only a few months before me.  After my diagnosis,  we went through surgeries and the reconstruction process together.   During this shared journey, we discovered that Transformation Gallery and Tattoo in Springfield, Missouri gives free tattoos to cancer patients.   A couple of weeks ago, we went downtown together to have the talented artist, Austin Evans, do his magic and embellish us both with 3D tattoos.    Between our plastic surgeon, Dr. Robert Shaw, and our tattoo artist, we look pretty terrific if I do say so myself….  🙂

My bold and brave friend, Robin, went a step further by having Austin tattoo a cardinal on her shoulder in the memory of her amazing college age son, Cody Uber, who was tragically killed in a vehicle accident a few years ago.

Pretty amazing, huh?

 

Adjusting to my New Normal

I’m happy to report I’m adjusting nicely since my total gastrectomy six months ago.    It looks like I’m maintaining my weight.  I’m still working to be disciplined enough to drink plenty of fluids and get enough calories.   I recently ordered benecalorie from Amazon.   It adds about 300 calories and 7 grams of protein to whatever I add it to  (preferably yogurt).    It has artificial sweeteners which I’m not excited about, but it’s worth it while I’m trying to figure things out.

One thing I’ve learned this past month- don’t eat breakfast and drink coffee at the same time.  Of course I knew better…. did I forget I don’t have a stomach or something?

One more thing…

If you are a woman over 40 and you’re reading this right now… and you’ve been procrastinating getting your annual mammogram, you know what to do.   Oh, and don’t forget those self exams every month – those are just as important!!

 

 

 

 

5 Months Out!

This has been a crazy month- full of ups and downs.  August started out with me recovering from gallbladder surgery.  Minor little surgery, but it sent me over the edge emotionally.   Looking back, I think it was a combination of cabin fever and anxiety about starting back to work full time after being off for so long.  For about a week or so, I would wake up feeling sad and crying for no reason.   When I’m crying like a two year old after getting a little cut on my finger, I know it’s time to visit my doctor.    She said that she’s seen this a thousand times with cancer patients.  She explained that I’ve been in “fight mode” and now that it’s over, I was coming down.  She ordered me to go hiking and she believed that once I got into the routine of work, I’d be okay.   She gave me three weeks and said if I wasn’t better, to call her and she’s prescribe something for me.  Turns out, she was right.  All I needed was a little sunshine and fresh air, spending time with friends, and getting back to work.    Here’s pictures from a hike from a couple of weeks ago with friends.   I don’t usually hike in Missouri and Arkansas in the summer, but it’s been an unseasonably cool August.

 

I’ve really turned the corner on my eating.  I’m not sure how much is related to having my gallbladder out, but I discovered that I can eat hamburgers, fried chicken, and ice cream sandwiches now.   In other words, not much I can’t eat.   Dairy is still questionable.  I tried a Boost shake a couple of weeks ago and I didn’t feel good for about 20 minutes or so.   Whey protein powder from Wal-mart made me feel sick for a few hours.  I won’t be trying that again for a long time.   The best protein powder I’ve tried so far that works for me is Progenex.  I really like the Loco Mocha flavor.  It’s on the expensive side,  but well worth it to add some protein into my diet.   The most exciting discovery is that I can eat my favorite Chicken nachos at Cantina Loredo!!   I was nervous about the cheese and not sure about the jalapenos either – but hey, my intestines don’t seem to mind at all!  Yay!! I’ve gained 3 lbs in the last week.

 

 

I’ve noticed in the last few weeks that my hair is falling out.  It’s annoying, but it’s small potatoes compared to everything else.    I believe it’s just a phase due to the trauma of all the surgeries, and that it will begin to grow back.   Thankfully, it’s not noticeable to anyone else.   I’ve added biotin and zinc to my morning ritual.   I’ll keep you posted.  I guess if you start seeing me with a bandanna or a wig on my head, you’ll know why.  🙂

By far the hardest part of the last month was finding out that my beautiful 18 year old daughter, Audra, also has the CDH1 gene mutation.   Remarkably, we found out the morning we moved her into college.   My mom had driven up from Louisiana to join us for the move, and the three of us stopped by to visit the geneticist to get the news together.  Although I knew there was a chance, I was really hopeful the test would be negative.   None of us cried, but I wanted to.  I know my mom had a lump in her throat too, but we kept it together.  It was a big day moving her to her dorm for the first time.  The day started out cloudy and became sunny.  It was the same with our outlooks.  We had to process the news, accepted it, and face the day.  Besides,  it’s not the end of the world.  Audra is very calm and easy.  Not the emotional type like I am.  She’s strong and resilient.  I know she’ll make the right choices for her health and I’ll be there for her just as she has been there for me.

 

I wake up every morning and I’m thankful to be alive.  I’m so grateful for all the love and support of friends and family the past year.  It was a year ago that I was diagnosed with breast cancer.  Wow, it’s been a journey!!

Speaking of family – my cousin, Melissa, came up for Louisiana for the Labor Day weekend.  It was fun to be outside hiking and you know, there’s nothing like just goofing off with Snap Chap and putting flowers in your hair.  Why not?  🙂

 

 

 

 

 

 

 

 

Another Surgery

As you may recall from my last post, I struggled climbing Mt. Berdstadt.  As the days went on, I continued to notice abdominal discomfort that would come and go.   After discussing it with a close friend,  she said it sounded like my gallbladder.  Turns out, she was right.   No need to procrastinate.   I had surgery to have my gallbladder removed last Saturday.    You should have seen the doctor’s face when he asked if I had ever had any abdominal surgeries.  His face was grim and  he said that it “complicates things”.   He was concerned there would be too much scar tissue and he wouldn’t be able to see by doing it laparocopically and would have to open me up which makes for a much longer recovery.   Thankfully, it went went fine.   My daughter and son went with me and I was able to come home the same day.   Dr. Olive explained to my kids that I had a ton of gallstones and he couldn’t believe I wasn’t it more pain.  He even gave us pictures-  I’ll spare you.  🙂

I fell off a ladder several years ago and they performed an MRI and told me I had gallstones.  They never bothered me until now.  I wish I had thought to tell my surgeon just to take out my gallbladder the same time he took out my stomach.   Turns out, sometimes rapid weight loss can effect your gallbladder.

Speaking of weight, I’ve lost about 30 lbs since surgery.   I’m about 5′ 7 ” and I feel my weight has stabilized around 128 lbs.   I keep a close watch because I don’t want to go below 120.    I did blood work about 2 weeks ago and all my numbers looked good.   I was a little low on Vitamin D and way over on B12, so I’ve adjusted accordingly and will check again in 3 months.

I’ve been through 4 surgeries in the last 10 months and I would be lying if I didn’t say this last one hasn’t made me feel discouraged.   I had just started running again, when I had another setback.    Now I’m back on the couch watching Netflix….waiting for my body to heal again.    But who am I to complain?   No, no, no…. stop with the negative.   I’m alive. I can’t complain not one little bit.

I think this experience has make me more humble for sure.   I was talking to close friend and former climbing partner tonight.  He’s has been facing physical struggles over the last few months also.   After talking with him, I realized that we are so much more than our bodies.  Our bodies do not define us.   It’s our spirit.  It’s what is within us.

 

Month 3

 Meeting Amy

I decided to go to Colorado.  No itinerary.  Just loaded up my car and took off.  I met up with some friends while I was there.   After spending a day in Alamosa,  I drove up to Aurora, CO to meet one of my CDH1 sisters – Amy Albers.   I met Amy on the internet and was blown away about how much we have in common.  Ironically, there is less than a month difference in our ages.  She was diagnosed with breast cancer the same time I was.  Like me, she discovered she had the gene mutation that put her at high risk for stomach cancer and she opted to have a total gastrectomy which was done only 2 days after mine.  Amy really inspires me.  She’s been through a lot more than I have.  She’s endured weeks of chemo and radiation, yet she’s risen through all of it .  She is taking in more than 1500-2000 calories a day and does cross fit three times a week.  HOW does she do it?  I had to meet her in person and find out.   We decided to meet for lunch at Buffalo Wild Wings.   As I walked out onto the patio – there she was.  Short sandy hair and a huge smile across her face.   She talked me into eating some french fries…..  and now I think we’re bonded for life.

After lunch, we went shopping at the health food store where I purchased some iron and calcium supplements and then we went to her Cross Fit studio where I purchased some protein powder called Progenex and a mixer cup.   Since I like coffee, I chose the loco mocha flavor.     Now – I have a plan to help boost my energy level.

In just the few hours I was with Amy, we shared a few laughs and even tears.  I look forward to the new adventures shared with my new friend…

 

Climbing Mt. Beirstadt

After a several days of wandering around Colorado, I finally met up with my friend and climbing partner, Gayla.    We planned to enjoy a few days hiking together before she joined some other friends for a backpacking trip.   We met up in Idaho Springs and drove up to Guanella Pass and pitched our tents.

I shared with Gayla how much I wanted to climb a mountain while I was out.   We both knew this would be a huge challenge for me, since I haven’t exercised in months and get tired easily, and occasionally get waves of nausea after I eat.  Being the friend she is, she agreed.    We decided on Mt. Beirstadt – it’s an easy 14er (practically just a walk up).

The plan was to get up at midnight, eat breakfast, and drive to the trailhead.  We would walk with our headlamps, walk slow, and take frequent breaks.   After I got it in my head that it was possible, I got really excited.  So excited in fact, that I got little sleep the two nights before our big day.

As planned, we woke up at mid-night on June 22.   Gayla made coffee and I mixed my coffee flavored protein powder.   I drank it slowly and finished it as we were driving.  I think we started on the trail close to 1:00 a.m.    I set the pace.  I remember losing the trail briefly and was caught off guard when having to make a water crossing.  The icy water numbed our toes.   As I was drying my feet and putting my boots back on, I thought it might be a good idea to take a few bites of a protein bar.

The night was spectacular.  The stars were bright and we could see the silhouette of the mountains around us.   We walked slowly, slowly…. catching a glimpse of shooting stars.

As the night grew on, I felt pretty good as far as energy.  However, my abdomen started cramping.  I’m still not sure if it was from the few tiny bites of the protein bar or from the shake.   I kept hoping it would get better….tried not to complain too much, and walk on.    After several hours, I was worse and I was feeling discouraged to the point I had to stop for a break.   The sun was beginning to rise over the mountains and Gayla got out her phone to snap some pictures.

I was beginning to believe I was too sleep deprived, too dehydrated, and calorie deficient to make it.   Besides, I had a long way to go back down and it didn’t look like I was going to feel better anytime soon.   The wind was very cold and my chest was surprisingly sore from the pull of my pack.   Self doubt had sneaked into my mind and I began sobbing.   I think all the emotions I had kept harnessed came trickling out at that moment.   Gayla took out the emergency blanket, wrapped it around me and explained that I probably just needed a minute to get my head on straight.  She believed in me. We probably had another 1,000 feet of elevation gain left.   After a few minutes, we took off again.   Another break before the summit, then the final push to the top.

 

I was so overwhelmed with emotion, that I fell to my knees when I reached the summit. There was a young guy already up there ( I think his name was Branden).  He probably wondered what was wrong with me, but I didn’t care.  I had made it to the top of a mountain only 2 1/2 months after a major surgery.  This was huge in my mind because if I could achieve this so early on, what could I do in a year from now….or two years from now?

 

Friends

I just want to say, I don’t know where I’d be without the love and support of family and friends.   I have had people that I don’t even know praying for me and I believe it’s why I’d doing as well as I am.

I have met some wonderful people along the way that have been incredibly supportive.  I call them my CDH1 brothers and sisters.   Thank you, Karen Schreiber,  Susanna Lindfors, Dan and Anne Crawford,  Cecilia Carr, Nicole McDonald, Jessica Sasser,  Charlette Graham, and Amy Albers and many others.  These people have given their time in emails, texts, phone calls, face time….. just a wonderful network of people I’m so thankful for.    I hope I can return all the love and kindness that has been given to me…

A couple of weeks ago, I celebrated with some friends of mine here in Missouri.  Here’s some pictures from that special evening….

 

               Make new friends.  But keep the old.  One is Silver.  And the other Gold.  

Two Months Out!

A lot has happened just over 8 weeks out!    I’m definitely feeling more “normal” now.   It’s been a learning curve for sure.   I’m beginning to figure out how often to eat and what the portion size should be.    I’m playing it safe when it comes to dairy and fried foods.    I still have off times/days where I feel nauseated after I eat, but it’s becoming less often all the time.   So far, I’ve lost about 25 pounds.  I expect to lose some more as I’m probably only taking in around 500-600 calories a day.  I finally got into those pants I’ve been hanging on to for so long.

I’ve learned that the portion size is really important.  If I eat too much, I’ll find myself feeling sick.     Below is a picture of a recent trip I took to Charleston, South Carolina to visit friends.   Of course, I had to order shrimp!  I had an appetizer and it was the perfect lunch portion size for me.

 

Emotionally, I’ve been fine.  Of course I get frustrated sometimes when I don’t have the energy I think I should have or when I’m dry heaving because I ate too much or I ate something that didn’t agree with me.    I just keep reminding myself that it takes time and I’m making good progress.

I’ve tried to keep moving, even when I don’t necessarily feel like it.   I think it’s important. I feel so blessed to have been able to attend my daughter’s high school graduation ceremony.   A couple of weeks later, the kids and I went out to and Indian Artifacts show in Springfield.   Our picture was taken for “Faces in the Crowd” for the Springfield News-Leader.

 

 

 

Getting back out into nature has been helpful.  Memorial Day I went on my first solo hike at Busiek State Park which is close to home.  I hiked about 4 1/2 miles which is the most I’ve done so far since surgery, but I plan to step it up.  I’m keeping trail mix in my pockets and nibbling like a mouse, putting one foot in front of the other.  I picture myself not only backpacking, but climbing again.  No doubt I will.  I’m probably the most determined person I know.  🙂

 

 

 

 

 

One-Month Checkpoint

Today marks my one-month post-op anniversary. So far, I’ve been doing better than I ever expected; I’m able to walk over two miles at once, I’m not in a great deal of pain, and I  haven’t used pain medicine since I arrived home from New York. I am beginning to learn how to deal with my new system, but it’s a lot of trial and error, and I’ve only scratched the surface. My biggest setback so far was when I decided to experiment with barbeque; that was a huge mistake (at least I know better!). The next few hours after that meal was filled with misery and a horrible nauseous feeling, but my doctor prescribed me some anti-nausea pills, and they seem to be working pretty well. I am experiencing waves of nausea fairly often, but the good thing is they only last 30-40 minutes and I’m back to feeling pretty decent again. I have found that hot baths feel good on my abdomen when I’m nauseous.

I’m eating lots of soup, oatmeal, bananas, potatoes, and salmon, which usually go down well. Cheese and fried foods are not very friendly. One of my biggest challenges so far as been staying hydrated. I’m supposed to wait 30 minutes between eating and drinking, and water by itself isn’t good for my system. I’m drinking mostly gatorade and tea, especially lipton green tea. I’ll continue experimenting what works for me, and will mark my progression month by month. I remain optimistic with my recovery.

Day 21

Ever wondered how you would die?  Me too.  I thought I was going to die sliding down a steep mountain once, but that didn’t happen- thank God.   One thing for sure- I’m not going to die of breast cancer or stomach cancer.   Speaking of stomach cancer,  Dr. Yoon contacted me yesterday – the pathology results are in.  They found two small places where cancer was beginning to develop.  Not a surprise, just confirmation that I made the right decision.

I’m doing remarkably well.  I’m a little sore still, but I’m not taking any pain medicine.  In fact, I’ve taken very little pain medicine since I left the hospital on Day 7.   I walk 2 1/2 miles a day,  eat solid foods….   Oops, just discovered yesterday my doctor still wants me on a soft diet.  Nothing harder than scrambled eggs or mashed potatoes.    I’ve been eating chicken, nuts, chips… all kind of stuff, but now that I know I need more time to heal, I’m back to eating more soft foods for a few more days.   My favorites are bananas, jello, pasta, and soup.  However,  food is not the priority.  Not now.  Drinking is more important at this point – I have to stay hydrated.   I’m not worried about losing weight or counting calories.  The focus is getting plenty to drink.

Other than experiencing a few waves of nausea at the beginning, I haven’t noticed any negative side effects.   There have been a few times where I’ve felt really nauseated after I’ve eaten something, but it usually goes away in a half hour or so.   So far I’ve noticed it after I’ve eaten dairy – like cheese or yogurt.   I haven’t tried milk yet.  Ice cream seems okay so far.  I chew gum or get a peppermint when I feel bad and it seems to help.  I heard this is common in the first couple of months of recovery and I can already tell I’m having less and less episodes of nausea.

I get tired, but then again, I just had a major abdominal surgery less than 3 weeks ago.  I have to keep reminding myself of that fact!  Oh, and my scar – it’s not bad at all.  It’s healing nicely and doesn’t bother me in the least.

I was prescribed a multi-vitamin.  I was also prescribed B-12 since it’s the only thing my body won’t be able to absorb now I don’t have a stomach.  I thought I was going to have to do B-12 injections once a month, but it turns out I can buy an over the counter B-12 tablet than dissolves under my tongue.  How cool is that?

In a lot of ways, this surgery hasn’t been nearly as hard at the mastectomy.  I know that doesn’t make sense, but it’s true.

For all my CDH1 brothers and sisters from all over the world who are following this blog who may be contemplating having a TG, let me ease your mind.   I know it’s scary.  It’s a major, serious surgery.    However, if you have a good support system, the best surgeon, and the right attitude – You CAN do it!

 

 

 

Home!

The day I was released from the hospital, I walked the six blocks to my hotel.  Took a little break, and later walked 2 blocks to the Ritz Diner with my mom.

 

On Day 10, I was feeling well enough to visit the Central Park Zoo.   Granted, I was walking slow and had to take some breaks, but it was so good to get outside and enjoy the sunshine!   Later that evening, we walked down to the bridge near our hotel and sat on the park bench and enjoyed the outdoors.

 

That afternoon, I called my doctor and I asked if would be okay if went home.  I wasn’t planning on leaving for several more days,  but I was feeling so good and I knew I would recover better at home.   Changed my flight to leave the next morning.   My beautiful friend, Lisa Jones, surprised me with a welcome home poster, balloon, and flowers.  She didn’t see it, but I was pretty emotional on the inside……just glad it’s over, happy to be home.

One week post-op

It’s hard to believe I’ve been at Memorial Sloan Kettering in New York a week already.

Considering what I’ve been through, I think I’m doing very well so far.   My body reacted negatively to the iodine test.  Night before last was the hardest because I was in the bathroom every hour or two.  Thankfully,  yesterday was much better.    It was big day for me because they disconnected me from the IV  that has been supplying me with fluids and also an epidural (which was excellent form pain management).      I miss my epidural.  I can’t zip around like before, but it very liberating not to have to take the IV pole everywhere I go.

I ate for the first time since my surgery yesterday.  I ordered scrambled eggs for breakfast.  They tasted really good,  but I don’t have an appetite, so I just ate a few bites very slowly.  Last night I ordered strawberry jello and mashed potatoes.   I ate all of the jello and maybe a third of the potatoes.   The doctor said not to worry,  that I will be able to eat more as my body adjusts.

I was given Tylenol in place of my epidural.   You can imagine the difference.  Last night, I finally asked the nurse at 2 a.m.  for oxycodone.   I only wish I has asked sooner.

Looks like I will discharged today.  I plan to walk to my hotel which is only a few blocks away.   I walked in here.  I can walk out.