Tuesday, January 24, 2017

8 Month Post-Op Update

We realized it had been a while since we posted an update on our post-op progress.  In all honesty, we’ve been so busy living and enjoying life that the past few months have flown by. We each have battled some hiccups and bad days along the way, but for the most part life is normal, we just eat a little bit different than most people.

We are 8 months post total gastrectomy, which is so crazy. January actually marks a year since this process officially began. I met with the geneticist for the first time at the end of January 2016. Who knew it would lead to this wild ride?!

Merry Christmas from the Bahamas! 
So what have we been up to since our last post 4 months ago? We have been chasing kids, working, spending time with family and friends, enjoying the holidays. We even took a cruise to the Bahama’s a week before Christmas! The trip was much needed and so much fun. The boys played with dolphins, hung out at the Atlantis resort, ran all over the beach in Nassau, had breakfast with the Cat in the Hat, and played their hearts out. Nicole and I were a little worried about losing weight on the trip because we were so active, but we actually ended up eating really well and it all balanced out. It was a great way to close out a hard year.

Our boys health has kept us occupied recently too. My son Andy was diagnosed with juvenile arthritis right before Christmas, so we’ve been going through testing to try to narrow down his specific form and adjusting to weekly Methotrexate injections. Nicole’s oldest son Caden broke his kneecap in a wrestling match a week and a half ago. At first they thought his femur was also broken and that surgery might be required, but luckily an MRI revealed the damage was not as bad and for now he is just immobilized to hopefully heal the kneecap. Nicole’s house has also been hit by strep and the stomach bug over the past few days, both boys have been sick. So she’s donning masks and gloves, spraying Lysol like crazy, and we are all praying she doesn’t come down with either. Unfortunately we found out on New Year’s Day that people without a stomach can still get the “stomach bug” since it actually occurs in the intestines. I got sick that morning and ended up in the ER getting fluids that night for dehydration. Way to ring in 2017! According to the GI these things will be “exceptionally violent” in us as our intestines are more sensitive due to the amount of work they do. I had a lot of abdominal pain for days afterwards and found out it was actually from swelling that happens in the intestines when you have GI bug. Since our intestines are more sensitive and we no longer have any real fat padding in the abdomen, we will just be more aware of the swelling that takes place. So we really need this bug to quickly leave the McDonald house and Nicole’s immune system to fight it off.

Around the time of our last post point Nicole was having trouble with her incision not closing. She underwent a surgery on September 28th where the wound was cleaned out and a wound vac was placed. The wound vac was a pretty painful experience for Nicole; however, it was effective. After a few weeks with the vac on the wound started to close and it is now fully closed and healed. Nicole has also had some issues with fat malabsorption and was dealing with some sickness after eating foods with a higher fat content. She started taking digestive enzymes with high fat meals to help her body absorb more nutrients from the food and they have really helped her out. They aren’t 100% and there are times she has issues with foods, but for the most part the enzymes have made a big difference in her ability to absorb and digest food properly.

Stricture (a narrowing at the area where the esophagus and small intestine were joined) turned out to be an issue for us both. I had dilations performed in August and September for what was called a “significant stricture.” At my first dilation the area was pretty much closed off and I even had food trapped in suture wire that was left from surgery. I had a really awful reaction to the first dilation and they felt it was because the area went from barely open to wide open and it was just a little bit aggressive for my system. The second dilation went much better and I finally hit my stride eating and maintaining my weight. I was supposed to have a third performed in October, but I was doing so well at the time it was deemed we’d wait until a problem arose instead of putting me through another procedure. I started having an increase in swallowing difficulties in early December so we set-up another dilation for January 13th. Turns out it was a lot worse than expected, the area was almost completely closed again and a lot of scar tissue had to be cut away before the balloon could even be place to dilate the area. I had some issues for a few days after with nausea and reflux much like the first dilation, but it passed pretty quickly this time. I will undergo another dilation on February 3rd to hopefully prevent the drastic closure that happened before. Nicole also had some difficulty with food getting stuck and underwent a dilation on December 28th and luckily that provided some relief for her. Since strictures can be pretty persistent they are going to perform another dilation on her tomorrow (January 25th) to hopefully stay on top of the issue. One cool thing that both of our EGD’s revealed is that we are both starting to form our own little stomach pouch under the anastomosis. How cool is it that our bodies can adapt that way?!

Since we both had stage 1 hereditary diffuse gastric cancer at the time of surgery, we are being monitored every 6 months for any sign of recurrence in the abdominal area. We both have had CT’s and everything came back clean! We will repeat scans again this summer. Lobular breast cancer is the next big concern we have to face and a prophylactic double mastectomy is on the horizon for both of us. We are being monitored every six months via mammogram or MRI (we both just had clean mammograms over the past month). Nicole is leaning towards having surgery in the summer of 2018. Steven and I want to evaluate my health around the two year mark to see if another pregnancy via IVF with genetic screening is possible. If so, we will pursue that route and I will have the mastectomy after having another child. If another child not possible, I will go ahead with the mastectomy sooner.

Our silly boys enjoying a train ride to the North Pole! 
Our fundraiser we held in November was very successful! We raised over $1500 to send to Dr. Guilford’s research center in New Zealand. Around the time we sent the donation we got a really cool update from his lab. They have actually been able to grow miniature stomachs that will allow them field test the medication in the lab. Our boys may be able to bypass this whole TG thing! One of the ladies in our CDH1 group collected photos of everyone’s children and took them to Dr. Guilford’s and they are now up in the lab to remind him of why he does what he does. When we emailed him telling him we wanted to raise money for his lab, his response to us was “we are confident your children will have better options.” Talk about goosebumps! In the future we will be doing other fundraisers for his research and we hope to have the same positive response that we had to our first effort.

As we approach the one year mark it seems like our bodies are really starting to adjust to this new life. They say it can take up to three years for everything to fully settle into place, but most of the big stuff will resolve in the first year. We probably won’t post a ton going forward, just because there shouldn’t be a lot of action as far as our TG healing goes. But we will posts as milestones approach, as news and developments about CDH1, TG, or HDGC/lobular breast cancer occur, any fundraising efforts we undergo or if anything crazy happens further into the recovery process. As another CDH1 friend and blogger Marne put it “the best thing about life after TG is LIFE.” So we intend to live it to the fullest, to enjoy every moment with our families, and to offer love and support to others who have to walk this path. We can always be reached by commenting on this blog, reaching out to us on Facebook or emailing us at Jessica.j.sasser913@gmail.com or mc0826@hotmail.com

Saturday, October 1, 2016

Raising Awareness and Funds for CDH1 Research

In our last post we talked about how our focus has shifted to raising awareness and funds for CDH1/Hereditary Diffuse Gastric Cancer research. Our biggest hope is Dr. Parry Guilford, a researcher in New Zealand who is working on a drug that would be taken every 2-4 years to kill off early cancer cells in the stomach, meaning a prophylactic total gastrectomy would no longer be the course of preventing HDGC in people with CDH1 mutations. We have three little boys who have a 50/50 chance of carrying our same CDH1 mutation and in about 7 years the first of these boys will be tested to see if they are a carrier. While we are so grateful we had the option of removing our stomachs when we found out about the mutation, we obviously want better for our children. Dr. Guilford is confident in the research his team is doing and truly believes our children will have better options than we had. It takes a lot of money and time to bring a drug to market, so we want to help provide funds for this project and also let the world know about advancements taking place in this field.

Thanks to my talented cousin-in-law Kristi Sasser we have a great t-shirt designed and we are ready to start taking orders! Here is an image of the shirt and it will be on a periwinkle, Gildan brand t-shirt since perwinkle is the color associated with gastric cancer awareness. We love the seahorse image, as the seahorse does not have a stomach and sustains itself by eating round the clock, just like us! The cost for the shirts is $15 for sizes Youth XS – Adult XL and $17 for Adult 2X & 3X. For people in the Birmingham, Hartselle, Tuscaloosa and Talladega areas we can arrange a time to meet and distribute shirts, but we will also offer shipping for a flat $2.50 rate. Payment can be made to myself or Nicole via cash, check, or PayPal. We will take orders from now until Wednesday, October 19th and we will need payment to be in by that date as well. The shirts should be ready for delivery by Monday, November 7th.  You can order by commenting on this post or by emailing me directly at jessica.j.sasser913@gmail.com. Please let us know what sizes you need, if you will need your shirts shipped and how you would like to arrange payment. All of the proceeds made from the selling of these shirts will be sent straight to Dr. Guilford and his team at the Center for Transitional Cancer Research at the University of Otago.

We are so excited about our first fundraising project and hope you all love the shirt as much as we do and support this effort. Please don’t hesitate to reach out to me or Nicole if you have any questions about the shirts or ordering.

Thursday, September 22, 2016

Four Month Update, Faith, and Our First CDH1/Stomach Cancer Fundraising Project

Here we are, four months post total gastrectomy. I know for my part I am amazed at how much life has been returning to normal over the past month. It feels like each week and each month things get better. Our families are planning a Christmas cruise to the Bahamas and we are so looking forward to sun, relaxation, and swimming with dolphins. Who would have thought we’d be planning a cruise six months after having our stomachs removed?! I celebrated my 32nd birthday over the weekend and I reflected on how much has changed in the past year. Last September we’d never even heard of CDH1 and within a year we discovered we carried this mutation and had prophylactic total gastrectomies. This time next year we will be even further down the road and adjusted to this stomachless life.
If you read our 3 month update then you know we were each experiencing some complications. Nicole’s incision has been a big problem for her. It would never fully close at the bottom and she’s had several procedures done in the doctor’s office to try to stimulate the incision to heal, but nothing was working. Nicole got our surgeon in Houston involved and after hearing her symptoms and seeing pictures of the incision he felt the best course of action would be for her to have another surgery to excise the wound and have a wound vac placed. He felt that it would heal within a matter of weeks if this route was pursued. Our surgeon here in Birmingham didn’t really want to perform surgery or insert a wound vac because he thought it would be hard on her. Naturally this has been a very frustrating situation for Nicole. Of course no one wants to go through surgery, but it’s been over 18 weeks since surgery at this point and not being totally healed is preventing her from doing things that she needs or wants to do. One thing we’ve learned from this whole experience is that we have to be our own advocates and push for our own care sometimes. Nicole has stayed on top of the problem and been in constant contact with both doctors’ offices. After another check-up, removal of debris, and CT scan, our Birmingham doctor has finally decided to move forward with surgery. She will undergo this procedure next Wednesday, September 28th and the hope is that this will put her on the path to finally healing. 

I had an esophageal dilation performed on August 19th to repair a stricture. While that dilation did improve my ability to eat, it also opened up the passage for bile to start coming up. For the first two weeks after the dilation I had persistent nausea, a bad headache, and my mouth tasted disgusting all the time. When we went in for my second esophageal dilation on September 2nd it was determined that I was experiencing bad bile reflux. I was placed on Xifaxan for 10 days to kill off any bacteria that may have been in my gut and I was given a tip that has made all the difference for me, add acidic foods and drinks to my diet. Bile is alkaline based and since I don’t have a stomach to produce acid anymore I can become too alkaline. We may need to buy stock in Tropicana based on how much Trop50 orange juice I have been taking down recently! Since the second dilation my nausea has been much, much better and I have been able to eat very well and have even gained a few ounces back. I am meeting with a GI specialist in two weeks to hopefully try some meds to help with the bile and then I will have one last esophageal dilation at the end of October to make sure my pipe is staying open.

It’s no secret that our faith in God and belief in His perfect plan has been what has sustained us through the early days of diagnosis and the surgery and recovery. I was asked to tell my story at church a few weeks ago and wanted to share that with anyone who may stumble across this blog: https://drive.google.com/file/d/0ByoYyITMwrkgekR4NTZkdktBdU0/view. Psalms 139: 13-16 tells us “For You formed my inward parts; you knitted me together in my mother’s womb. I praise You, for I am fearfully and wonderfully made. Wonderful are Your works; my soul knows it very well. My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth. Your eyes say my unformed substance; in Your book were written, every one of them, the days that were formed for me, when as yet there was none of them.” Our CDH1 mutation was not a shock to God. He knew from the beginning that this was part of us and He knew that if we would trust Him then this could be used in a magnificent ways for His glory.

Now that our surgery is behind us we want to turn our attention to raising awareness and funds for CDH1 and hereditary diffuse gastric cancer. Our hope is to one day have an annual walk to raise money, but our recovery just does not allow for that this year. But thanks to my fantastically talented cousin-in-law Kristi Sasser we will be selling a specially designed t-shirt and all the proceeds will go to Dr. Parry Guilford. Dr. Guilford is a genetic researcher in New Zealand who discovered the link between the CDH1 mutation and hereditary diffuse gastric cancer and lobular breast cancer. He is currently working on a drug that would be taken every 2-4 years to kill off early cancer cells. Here is a great article that explains the drug: http://www.stuff.co.nz/national/67457475/otago-researchers-identify-drugs-to-beat-hereditary-cancers. In the next 10-15 years Caden, Liam, and Andy will be tested for this mutation. Our hope is that if any of the boys carry this mutation they will have the option of taking this drug instead of having to undergo a total gastrectomy like we did. We will post the design and ordering information very shortly and we hope you all will support this endeavor!

Saturday, August 20, 2016

3 Months Post Op and Bumps in the Road

We are officially 3 months post total gastrectomy! For the most part the past month has been good, but we have each had a few bumps in the road.

Nicole has had a lot of problems with her incision. It would never fully close at the bottom and was leaking a lot. A few weeks ago she went to our Birmingham doctor to get it checked out and they found a few inches of knotted sutures that her body had not absorbed. They cleaned it out and packed it with the hope it would heal and close. Thursday the area opened back up and tissue was visible in the opening. Nicole spent all day Friday  at the UAB ER and there was some fear that an abscess had formed. Luckily a CT and blood work ruled out an abscess, but they did have to open up the area, clean out what was there and pack it tightly. She will have to keep it packed for the next two weeks and then go back to Dr. Heslin to have it evaluated.

I had finally gotten over my bad nausea spell and was rocking along and then I started having trouble eating. Whenever I would start to eat the food would get stuck and I'd have to bring it up. I was also having chest pain in the general area where the esophagus and small intestine were sewn together. A swallow test confirmed that I had a stricture, a narrowing at the anastomoses. Yesterday I had a procedure called esophageal dilation performed. It's basically an endoscopy where they use a ballon to open up the narrow area. Dr. Ahmed showed us some images after and it was definitely very narrow and my internal sutures had trapped food in the anastomoses. The bad news is that strictures tend to return several times before the area finally stays permanently open, so they want to aggressively treat me. In two weeks I will have the dilation performed again and based on the narrowing over the two week span they will determine how often this should be done. There is also a possibility of them having to place a short term stent at some point to hold the area open.

With a surgery of this magnitude I think some complications are to be expected, so we are really trying to not let these issues get us down. They are small bumps in the road and we have a great medical team working to resolve them and get us back on track.

Friday, July 22, 2016

Update: Two Months Post Op!

It’s almost hard to believe that we are 8 weeks post total gastrectomy. In some ways the past two months have crept by, but in other ways it feels like just yesterday we were in the hospital!

Life has definitely changed over the past two months, but overall it seems as if we are both starting to settle into our new normal. I went back to work this week and I’ve been surprised at how well it has gone. I have a desk job and actually work from home three days a week, so it’s really easy for me to graze all day. I’ve been a little tired by the time I reach the end of the day, but nothing unmanageable. Nicole has been able to go to school and work in her classroom some and will start back on August 5th. As a teacher, I know it will be a little harder for her to be able to eat throughout the day. Nicole and I have both had our first B12 injections and that seemed to help a lot with energy levels (B12 is the only vitamin fully absorbed in the stomach, so we will have to supplement it).

So what hurdles and issues have we faced the past month? Around the 5 week mark I did have a week of severe nausea and trouble eating. We did some tests to rule out major complications and overall the determination was that I “hit a wall” and my new set-up just needed a rest. After a few days of liquids only I was able to start adding foods back in and have had no real trouble since. I do still have small waves of nausea, but usually it’s because I am hungry and once I eat it passes. We both still have times where we either eat a little too much or certain foods don’t agree with us and we get discomfort. Usually laying down for a little bit helps this pass. Our bodies are pretty quick to let us know if we eat something that doesn’t agree with our new set-up. What we have discovered too is that one day we will eat something and be totally fine, but the next time we try it we may have problems. Case in point: I ate a Krystal chick sandwich one evening and was fine, a few days later I had one for lunch and was dry heaving in the parking lot after. Another issue we deal with is making sure we take small bites and chew well. If we don’t do that then food becomes stuck in our chest and it’s very painful, it feels like you can’t breathe and we have to go to the bathroom and get the food up. The last thing of note is our hair, which has been falling out and breaking like crazy. This is mainly due to nutritional deficits and most people say this should subside within six months of surgery.  What’s odd is how the texture of our hair has changed, my hair dresser even made a comment about it the other day. I usually have oily hair and if I don’t wash it every day it looks like I just poured grease on it, but now I can get away with not washing it every day and just using some dry shampoo. Nicole actually decided to combat the loss and went ahead and got a sassy new short-do! This is all a learning process and really every day, every week things get better.

So now the good stuff, new foods! We are getting braver and trying new things all the time. Some highlights of the past month: Reese pieces, peanut and peanut butter M&M’s, Dipping Dots, Mexican pizza from Taco Bell, cheese dip at Mexican restaurants, Subway sandwiches, Sonic cheese fries and cheese tots, shortbread cookies, s’mores (this was Nicole and she took her time, it took about an hour to finish it, but no dumping syndrome!), Mata’s pizza, and jambalaya. I still get a little nervous trying new things in public, like at restaurants, just in case it doesn’t it agree with me. Also, for both of us it seems like our weight loss has really stalled. In the past eight weeks I’ve lost 25 pounds and Nicole has lost about 10 pounds (she’s a total rock star).

We are now shifting our focus to raising awareness and money for CDH1 research. We are constantly reminded that in a decade we will be testing our children and they will face decisions if they do in fact carry this mutation. Our hope is that they have better options for screening and prevention and don’t have to go through a total gastrectomy. We are currently looking into setting up a walk to raise money for early November and will hopefully have some details on that soon.

As always, we are so grateful for all the prayers and acts of kindness that have been given to our families the past two months. Even though we are two months out, we are still very much in the early stages of healing and we know your prayers will carry us through any bad days we may encounter. Every day we are reminded of how precious life is and we are so thankful we have a chance to play with our kids, be with friends and family, and just live. Through our blog and connections in the “stomachless community” we have met several people who are actually about to have their gastrectomy surgeries in the coming weeks, so we ask that you keep those families in your prayers as well. 

Wednesday, June 22, 2016

1 Month Post Op

Hi, everyone! I'm Nicole, the other sister. This will be my first blog post...ever. It has been one month since my sister and I both underwent total gastrectomies in Houston, TX. It is definitely an adjustment, but we are both doing exceptionally well and getting better every day. This was definitely the hardest thing I've ever been through. It was physically hard, but I was an emotional wreck the first two weeks. No one had prepared me for that part. I think this was mostly in part because I had never been away from my children that long. As hard as it was, I know we made the right decision to travel to TX for the surgery. We had a wonderful surgeon and MD Anderson is a great hospital. A few days after leaving the hospital, we received our pathology reports. My sister had one spot of submucosal cancer and I had ten. So, technically we were both diagnosed with Stage 1 Hereditary Diffuse Gastric Cancer. They took my appendix, gallbladder, and ten lymph nods during the surgery and thank God, they were all clear. Our doctor said no further treatment is needed. Those first few days after surgery, I had questioned whether or not I had made the right decision, this was total confirmation that I had. Having my sister go through this with me has made the experience so much more bearable though. We text or talk daily about how we're feeling and give each other support and encouragement when one of us is having a bad day.

When they say everyone's recovery is different, they mean it. I had trouble with nausea the first couple of weeks, but  have only had a couple of bouts of it in the past two weeks. Jessica was just the opposite. She had no nausea to begin with, but has struggled the last couple of weeks. She told me this morning that it was the first morning she hasn't been nauseous in a while, so hopefully she's getting better. We both have trouble eating very much in the mornings and find it much easier to eat after 11:00 am. The eating around the clock does get annoying, but I'm getting use to it. I am finding that the amount of food I can eat at one time is increasing and there are actually a lot more things I can eat than I had anticipated at this point. I went to the movies with my husband and our five year old the other night and ate six handfuls of popcorn. I really surprised myself and it felt great to think that I will be able to go watch a movie and have popcorn with my kids like normal! Maybe one day I will be able to have a soda too! I have really been missing my sweets and I haven't been brave enough to try anything with much sugar in it yet. I have found some great recipes that are made with Splenda though and I am starting to try those out.  I am able to get out of the house for a few hours at a time now, but I do tire very easily. I have noticed an increase in my energy the past week though. I'm taking vitamins daily and I will have my vitamin d and B12 checked tomorrow. I also get my feeding tube out tomorrow and I am super excited about that! It has hurt way more than my incision site. My sister had some trouble with hers this week and got hers out a couple of days early. She said it felt better right away and the hole closed up in 24 hours.

 I am starting to settle into my new stomachless life pretty well. I've heard someone else say this, but it is so true, the best part about life after TG is LIFE. We feel that we are truly blessed that God revealed this to us and that we were able to have the surgery and totally eliminate the cancer before it spread beyond the stomach. We were given a second chance that our beautiful mother didn't have and we are so grateful. We appreciate all the prayers, texts, calls, cards, gifts, meals, and support you have shown us. We have felt your prayers and God's hand throughout this whole process. Please keep praying our recover continues to go well.

Saturday, May 28, 2016

Post Op Day 4

So we are now four days past our total gastrectomies. Wow! The past few days have definitely had some highs and lows. For the most part we have met or exceeded the expectations of the doctors and nurses. Day 1 wasn't all that bad and several times we commented how it wasn't as bad as we thought it would be. Day 2 and 3 were different stories and we each struggled with different things. For starters, our bladders were very slow to wake up and we had to be re-catheterized in the wee morning hours Thursday. Our catheters came out again Friday afternoon and Nicole's was working early on, but mine decided to wait until 30 minutes before the deadline to start working. Nicole has struggled with nausea from the tube feeds and her formula amount had to be adjusted down. So far I've tolerated the tube feeds well, they just leave me feeling very full and bloated so I haven't taken much in orally. Sugar free Popsicles and decaf ice tea have been my go to the past few days. I can finish a whole Popsicle and about 3 ounces of tea or water. My main problem was (gross alert!) getting my bowels moving again after surgery. I wasn't passing gas or anything else and as a result I was so bloated and miserable. Thursday was awful and on Friday morning they gave me some meds that helped a little that morning but didn't last long term. But finally around 2am this morning everything woke up and I've passed what they wanted me to and I have felt much better. We both have a lot of weakness and fatigue, but we expected some of that. We're both also really struggling with missing our kids. They're having fun and are well taken care of, but we still would give anything to be home with them. We were hoping to leave the hospital tomorrow (Sunday) but because of the long weekend it may be Monday or Tuesday. Please keep all the prayers coming, they have been greatly felt and are deeply appreciated.