6th Anniversary and Facebook Memories

6 years ago today, I was laying in a hospital bed at MD Anderson, totally out of it, having had my stomach removed the day before. Last year, around my 5th anniversary, I enjoyed all of the Facebook memories that popped up. There were posts from me as I was anticipating the surgery,from my husband giving updates during surgery and after, and then from me again when I was finally with it enough to post myself. I thought it would be helpful for me as I reflect back and for others who are contemplating the surgery and wonder what lies ahead to put those memories together here in one place.

Me - February 7, 2017, 8:04 AM

Two weeks from today I embark on the scariest journey of my life. When I was diagnosed with breast cancer in April 2015, I had genetic testing done. I tested positive for a very rare gene mutation, CDH1. While it is affiliated with breast cancer, it has an extremely high correlation with Hereditary Diffuse Gastric Cancer, cancer that forms in the lining of your stomach and is undetectable until stage 4 or 5 and it is too late. The only recommended course of treatment is to have a Prophylactic Total Gastrectomy, ie have your stomach removed as a preventive measure. After much research and agonizing, I have decided to have this surgery completed at MD Anderson in Houston on February 21. I appreciate your prayers for a smooth surgery, uneventful and swift recovery and for a lifetime of learning to live a normal life without a stomach, it can and has been done.

Me - February 18, 2017, 8:11 AM

Sitting in our condo on Padre Island, looking out over the Gulf of Mexico. Flew down to Houston on Wednesday. Had pre-op appointments at MD Anderson on Thursday, Came down to Padre Island/Corpus Christi for the weekend. Will return to Houston on Monday and hope to have surgery on Tuesday. Right now things are uncertain. Started having what I thought were allergy symptoms late Monday, was really bad Tuesday and Wednesday, making the flight miserable. Hoped it was allergies and the allergens wouldn't be present in Texas. Am better, but still congested and coughing. Definitely not the flu but likely a cold and if I don't get this whipped in the next 3 days, it may delay surgery They have this thing about you being healthy and being able to breathe going into surgery.

Me - February 20, 2017, 6:12 PM

The good news is I think I am feeling well enough that surgery will happen tomorrow. The bad news is I think I am feeling well enough that surgery will happen tomorrow. Thank you to everyone for your continued prayers. We report to the MD Anderson OR tomorrow at 5:15am. Surgery should begin around 7:30am.

Keith Stokes (my husband) - February 21, 2017, 7:17 AM

Linda just went back to surgery. The first update will be at 10, then every 2 hours.

Keith - February 21, 2017, 10:57 AM

About 40 minutes ago, I was told the surgery was complete and the doctor would see me soon. Still waiting.

Keith - February 21, 2017, 2:51 PM

Just saw the surgeon. She will be starting to wake in about 20 minutes and I may be able to see her in about an hour and a half. He said that all went well. Nothing looked bad but the type of pathology they will do will take about a week.

Keith - February 22, 2017, 8:51 PM

Linda's heart rate is rapid, but it isn't bothering her beyond the annoying alarms. We moved floors so they can monitor telemetry continuously. They took x-rays and blood for tests. The heart rate has not responded to drugs so far.

Linda still sleeps as much as they will let her, but I told her of the KU victory.

Keith - February 23, 2017, 1:25 PM

Linda's heart rate has behaved today.

On her most recent walk, she took 2 of the very short laps for the first time. She has fewer tubes and is more comfortable.

Keith - February 24, 2017, 12:37 PM

Linda is progressing and will try to walk and sit up more today.

She is now permitted a tiny amount of clear liquid and hasn't wanted more.

She has tulips from her sister in law and appreciates them, but there is no need for others. There is little room and we probably have at least one more room change ahead.

Keith - February 25, 2017, 9:40 PM

Progress is very slow. Linda still sleeps often, but was up for 5 short walks today and would take more, but for the hassles of being in the hospital. The doctors seem to think that her progress is normal.

This was the second day of liquid diet. The quantity permitted is very small, but Linda does not appear to mind the quantity. I think she will move to soft food sometime tomorrow.

Me - February 27, 2017, 5:58 PM

Thank you to everyone for the continued prayers and concern. It's hard to believe it's been almost a week since surgery. It's been an adventure. Surgery went well and as expected. I've had some issues with temporary high heart rates and low oxygen levels, but nothing has been severe and we continue to work on getting it all under control. Had nothing to eat or drink Tuesday, Wednesday, or Thursday. Friday and Saturday was on a clear liquid diet of 240cc every 8 hours. That's not very much. Was moved to mechanical soft diet on Sunday. Was frustrated over the weekend because even though I was given the go ahead to eat, had no direction as to what I should really be doing since the dietitians don't work over the weekend, made even more complicated because the heart issues had me being on the telemetry floor instead of the normal floor I would have been on with this type of surgery where the nurses understood a little better what surgery I had done and what my needs were.

Today has been much better as I've got direction from a dietitian, got switched to a post gastric surgery diet that I was supposed to be on yesterday instead of the one I was on, and got up and walked a lot. Even went to the beauty shop and had my hair washed.Yesterday I was getting mixed signals on everything, including walking. They are talking that I could be released from the hospital as early as tomorrow. We'll see. Will then still be in Houston for at least a few days before returning to KC.

Me - February 28, 2017, 3:23 PM

Got out of hospital this morning. Am at hotel (connected to hospital). Will visit doctor and nutritionist in office on Thursday to evaluate if we come home Saturday or if it's an additional week.

Me - March 1, 2017, 11:41 AM

Yesterday was an adventure on so many levels!

I got released from the hospital a little after 11:00, beginning the adventure of figuring out how to live and eat without a stomach...on my own! I'm supposed to eat something every 2-3 hours, so it was basically time to eat. 6 pages of post-op diet guidelines in hand, we explored all the food options at the hotel, including a small store and a "grab-and-go". Settled on a few chunks of watermelon and some cheddar cheese. Then headed to the nearest grocery store. Was hoping Keith could push me in a wheelchair, but they only had scooters. If you've never used one of those things before, they are an adventure in and of themselves. Added to it, the grocery store was in the midst of a major remodel and had boxes and stuff all over the store as they were reshelving and such. It was an obstacle course to navigate through. With diet guidelines still in hand, we read labels and compared items like I've never done before, It probably took us an hour in the store and we spent less that $50. Spent the afternoon trying to consume something every two hours. Had trouble keeping much of it down. Had not had trouble with this in the hospital. Reevaluated early evening using the food diary I'd been keeping all day and realized the solid foods were staying down, but liquids were causing more problems. Water seemed to be fine, but not really anything else. They encourage protein shakes and such to fill gaps between meals. I was trying them and some other beverages to keep hydrated, but that part just wasn't going well. I think I was pushing myself too hard and trying to do too much. I've backed off and am doing much better.

The adventure last night was trying to sleep. I found the bed at the hotel EXTREMELY uncomfortable! It is super soft and I just couldn't sleep. Tried moving to chair in the middle of the night, but it wasn't a chair designed for sleeping. Finally woke Keith and traded sides of the bed and slept a little better, but not much. Am exploring other options today.

Me - March 2, 2017, 8:50 AM

Had a bed board under the mattress last night. Slept much better! Follow-up with doctors today. Will know in a few hours if we get to return to KC soon.

Me - March 2, 2017, 6:54 PM

March 2, 2007 - It was about 9:20am when I got the call that changed my life forever. That's the day my husband and the father of my two wonderful children, Jesi Lipp and Mary Clow, died. We've been through so much since then. 4 graduations, 3 weddings, 1 divorce, and so much more. I love my children so much. It is hard to be away from them today. I want to wrap my arms around them, but I can't because here I am on March 2, 2017 embarking on another journey that will change my life forever. I had the follow-up with the doctor and nutritionist today. He can't decide whether to let me go home on Saturday or not. A couple of the blood counts are not quite where he would like for them to be. Will have another blood test tomorrow and then decide. So much uncertainty, so much unknown about this future without a stomach. So much like 10 years ago when I didn't know how I was going to keep going, but knew I had to. For myself and for my children. I now also have a wonderful husband and son-in-law, and ex-son-in-law. They have all played such an important role also. Thank you to everyone who has helped us get through the last 10 years and who will be along on the journey for the next 10.

Me - March 3, 2017, 3:47 PM

I GET TO GO HOME TOMORROW!!!

Me - March 3, 2017, 7:53 PM

After eating every "meal" since being released from the hospital in the hotel room or at the "grab-and-go" at the hotel, we tried the hotel restaurant last night. Keith ordered an entre and I ate just a very few bites of his meal. With success then, we decided to venture out tonight and do the same thing at a real restaurant. It went well. Feeling good about this. Wasn't expecting to do so only 3 days after being released from the hospital. It was nice for Keith to be able to have something other than hotel/hospital food.

Me - March 4, 2017, 1:55 PM

GOOD TO BE HOME!

Me - March 9, 2017, 9:30 PM

I'm supposed to walk 6 times a day. I just walked all the way around Rose's pond, without stopping, for the first time since surgery. It's getting cold and windy out there....I think that gave me extra motivation.

Surgery and Hospital Stay

It's hard to believe it's been almost a week since surgery. It's been an adventure. Surgery went well and as expected. I've had some issues with temporary high heart rates and low oxygen levels, but nothing has been severe and we continue to work on getting it all under control. Had nothing to eat or drink Tuesday, Wednesday, or Thursday. Friday and Saturday was on a clear liquid diet of 240cc every 8 hours. That's not very much. Was moved to mechanical soft diet on Sunday. Was frustrated over the weekend because even though I was given the go ahead to eat, had no direction as to what I should really be doing since the dietitians don't work over the weekend, made even more complicated because the heart issues had me being on the telemetry floor instead of the normal floor I would have been on with this type of surgery where the nurses understood a little better what surgery I had done and what my needs were.

Today has been much better as I've got direction from a dietitian, got switched to a post gastric surgery diet that I was supposed to be on yesterday instead of the one I was on, and got up and walked a lot. Even went to the beauty shop and had my hair washed.Yesterday I was getting mixed signals on everything, including walking. They are talking that I could be released from the hospital as early as tomorrow. We'll see. Will then still be in Houston for at least a few days before returning to Kansas City.

The night before surgery

I'm sitting here on the eve of my surgery. I'm freaking out. I can feel my heart rate accelerating. I try to take deep breaths to relax and stay calm. How did I get here? Am I really doing this? Am I really having my stomach removed in less than 12 hours? What will the rest of my life be like? There's no turning back.

It all started so simply. See how the journey started here.

It's late. I'm tired. I should try to get some sleep. 4:30am will come quickly. That's when the alarm is going off. We have to report to the OR at MD Anderson at 5:15am. Surgery will begin around 7:30. Next time I write, I'll be stomachless.

Telling the World

This is what I posted on Facebook this morning:


Two weeks from today I embark on the scariest journey of my life. When I was diagnosed with breast cancer in April 2015, I had genetic testing done. I tested positive for a very rare gene mutation, CDH1. While it is affiliated with breast cancer, it has an extremely high correlation with Hereditary Diffuse Gastric Cancer, cancer that forms in the lining of your stomach and is undetectable until stage 4 or 5 and it is too late. The only recommended course of treatment is to have a Prophylactic Total Gastrectomy, ie have your stomach removed as a preventive measure. After much research and agonizing, I have decided to have this surgery completed at MD Anderson in Houston on February 21. I appreciate your prayers for a smooth surgery, uneventful and swift recovery and for a lifetime of learning to live a normal life without a stomach, it can and has been done.

Making A Decision

It was November 12, 2016 when I shared this with family:

I have made what I believe is the hardest decision I have ever made in my life.  On February 21, I am going to have a prophylactic total gastrectomy, ie. I'm going to have my stomach removed.  As much as I don't want to do it, all evidence indicates that it is better than the alternative.  I think what really made me decide to do it was not so much the not wanting to die from stomach cancer (which I don't want to do), but more the not wanting to live the rest of my life in fear.  If I don't have the surgery then every time I don't feel quite right, I would be wondering "is this the cancer, is this the cancer".  I don't want to live my life like that.  And I have always taken doctors' advice about surgeries or procedures to have or whatever, so why was I questioning it this time and thinking I somehow knew better than the doctors.  This will be life changing, no doubt about it, but I have read several blogs online and talked to one person on the phone who is 4 years post surgery and there are plenty of people that have had the surgery for this exact reason and are living a "normal" life.

The surgery is on a Tuesday, but all of the pre-op appointments (surgeon, anesthesiologist, cardiac, x-ray, lab) are the Thursday before, so we will actually be headed down on Wednesday, February 15.  We are going January 5 to have another endoscopy done as it will be almost a year since the one we had down there last April and the surgeon wants a more recent one than that.  If we had it done at the same time in February, it would have to be the Tuesday before so they would have time to get pathology back and I just couldn't see being down there for a whole week before the surgery.  Also, Keith's vacation resets January 16, so by doing it in early January, those two days can be on this year's vacation time instead of next year's.

For more details about the actual surgery, I recommend this blog by two sisters who both had the surgery done in April by the same surgeon I will be using at MD Anderson.

Searching for Answers

My oldest daughter, Jesi, also tested positive for the CDH1 gene mutation. She had genetic testing done as soon as I was diagnosed with breast cancer because she actually had risk on both sides of the family.  She had her blood drawn the day before mine.  Hers was sent to a lab that was supposed to take two weeks longer than mine, but she actually got her results back a week before I got mine. However, she didn't tell me until I had my results as she was hoping it would be from her late dad's side of the family and I wouldn't have to worry about it.

 After spending several months researching ourselves and talking with genetic counselors, medical oncologist and gastric surgeon in Kansas City and not talking with anyone that had ever seen a patient with a CDH1 genetic mutation, we decided to go someplace where we could talk with people that have actually dealt with this gene mutation.  Through a friend of a friend type referral (not from any of our doctors), we connected with Dr. Paul Mansfield at MD Anderson in Houston and Jesi and I both met with him January 7, 2016.  We also met with a genetic counselor at MD Anderson. Both Dr. Mansfield and the genetic counselor have several patients with this gene mutation.  In some ways, we didn't learn anything new, but it was still helpful to hear it from someone who has seen it before.  

I had tried to convince myself that our family didn't fit the "typical" family with the mutation and HDGC (Hereditary Diffused Gastric Cancer) because we didn't have as many incidences of gastric cancer as most families; the genetic counselor said that actually we are a typical HDGC family.  They are finding more CDH1 mutations since it is now in the breast panel gene testing, but it is still a rare genetic mutation.  Because of the rarity and the small sample sizes, it is hard to determine the actual risk of gastric cancer, but they still believe it to be somewhere between 50-80%.

We heard the same answer that we had heard before, but it was helpful to hear it from someone with experience.  The only preventative measure is to have a prophylactic total gastrectomy.  The only recommended screening if you choose not to have a gastrectomy or before you do, is annual endoscopies with random biopsies.  Because the cancer develops in the stomach lining, it rarely shows up on an endoscopy, but that is the only screening available.  Jesi and I both had endoscopies done the previous summer because of the mutation, but rather than the 30 recommended biopsies, I had 3 and I think Jesi had 5.  Thus, the problem with seeing a doctor with no experience with the gene mutation.

The gastric surgeon we saw in Kansas City assured us that even though he hadn't done gastrectomies for CDH1, he has done plenty of them and "removing a stomach is removing a stomach."  What we learned at MD Anderson, is no, there is a difference in how you need to do the surgery so that you make sure you get every stomach cell, etc.

What I decided in January was that as much as it scared me to have the surgery, it also scared me not to.  At that time, I was leaning toward having the surgery, but waiting a year to do so.  I wanted the time to get myself emotionally ready, physically ready, ready at work, not miss any events around two weddings in 2016 (my youngest daughter and my nephew), etc.  I did of course run a risk by waiting, but I felt like I would be much more at peace with the decision in a year, so was willing to take what I thought/hoped was a small risk in waiting.  I decided in January, that if I did the surgery, I would definitely do it at MD Anderson rather than KC.  I learned that it would be approx 5 days in the hospital and then they want you to stay in town for another week in case of complications.  I felt that as much as I would rather be near my family and friends during that period, if I was gong to do this, I wanted the best and that was in Houston.  There would still be plenty of recovery time at home as the anticipation was to be off work 2-3 months.  Thus, part of the reason of wanting time to prepare.

My word to family in January 2016: "I don't like it, but that's where I am."