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!

the difference between and ordeal

 

 

 

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.

Lisa Welcoming me

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.

 

image

 

 

 

First Milestone

My daughter, Audra, and my friend, Tami flew home today.   My sister,Renee,and nephew, Jackson, went back to Georgia yesterday.   It’s just me and my mom now.
Today was a big day because this morning they did s dye test to see if I could swallow without any problems. Feels weird to say I haven’t had and liquids or food for the past 5 days. I’ve only has an iv, and no feeding tube.
Drinking the iodine was an adventure.  Dr. Yoon and his Fellow, Ned Barlett, visited me a few hours after my test, and said everything looked great. The goal today is to drink 2 cups of water. Sounds easy enough. Baby steps.

Update

Mom is doing surprisingly well; she’s walked five laps around the floor at one time yesterday, and this morning she was able to take a shower by herself. She no longer has a catheter, and is allowed to get out of bed by herself. She is still in pain, but they’re giving her stuff that seems to be working for the most part. Mom says that she was able to sleep a lot easier last night. I am hopeful that she continues to steadily improve over the next few days.

Mom met a new friend yesterday. Her nurse, Martin, is a fellow backpacker and hiker. He shared his adventures of Pantegonia and the base camp of Everest. I’ll see if I can get a picture of them together before I leave from New York.

 

Update: Here’s a pic I just took of Mom with Dr. Yoon and his fellow.IMG_0400

Day Two

Mom’s pain seemed manageable immediately after surgery, although she was experiencing some muscle spasms every few minutes. She was able to talk to us and she still had a smile on her face.

The pain worsened as her medicine ran out, and the battery that was giving medicine had died during the night. She also had an allergic reaction to the narcotics, which made her skin itchy and irritated. The lotion they gave her only made it worse, making her face a little red and puffy. To top it all off, her catheter was inserted wrong.

Her situation is under control now, and they still expect her to be up and walking sometime today.

Just Wheeled In

Surgery is over! The doctor came to talk to us, he said everything went really well. We’ll be able to see her soon.

She’ll be on an IV for the next four days, so she won’t be able to eat or drink until Wednesday. Mom plans to stay in the hospital for 7 days, and 7 more in the hotel, and then she’ll be back home!

Thanks to everyone who has kept her in their thoughts and prayers. We’re not completely out of the woods yet, but things are looking fine so far and we are in high spirits. I’ll keep up to date on how she’s doing for the next few days, which will probably be the hardest for her.

Day One

IMG_0203.JPGAlright, today’s the day! We’re waiting for an epidural shot, and then we can get the show on the road.

Mom has a great attitude. We’re all gathered here in the pre-op room laughing and making pleasant conversation.

 

Okay, so here’s what happened the past two days:

Thursday night was special; we went to the Abuelo’s Mexican restaurant that happened to be a few miles away from our hotel in Kansas City. I don’t think I’ve heard so much laughter in a restaurant in my life. We got a few looks from the noise we were making, but we didn’t care.

Mom shared her story with our waitress (it happened to be her first night working), and she told the manager, who came out and exchanged life stories. He excused himself, and returned to present us with a complimentary “plate of love,” some of the best cake in the country.

The next morning, we took a shuttle to the airport and flew out at 6:30. We arrived at NYC just in time to drop our luggage off at the hotel, grab some quick sandwiches, and walk to our appointment with Dr. Yoon.

We love Dr. Yoon. He seems very confident, and made us feel at ease. He prescribed the bowl prep, and Mom went through a series of pre-op procedures (EKG, ultrasound, x-rays, etc). It turns out that quick Asian wrap was Mom’s last meal before surgery.

We received a pleasant surprise last night at our hotel. There was a knock at the door, and next thing we know Aunt Renee and her son, Jackson, are in our hotel room! They had figured out exactly where we were, and traveled all the way from Georgia to be there for Mom’s surgery.

The waiting room would be overflown if everybody that was thinking about my mom could be here. Keep those prayer’s coming! I’ll let everyone know how she’s doing as soon as we know something.