Genetic Testing - now what!!

It has been a very long time since the last post.  I see the last post was about the Latissimus Dorsi Flap procedure.  So, what now?  Genetic testing has finally come down in price enough that we figured it was time to have it done and see if there is a BRCA mutation for the sake of our children and grandchildren.  We got the results and BRCA is negative but we got the news that there is a CDH1 gene mutation! Didn’t see that one coming!  Huh?  Looking up CDH1 brings a whole new twist to things.

Copied from the site nostomachforcancer.org:    “Hereditary Diffuse Gastric Cancer (HDGC) is one type of stomach cancer that is sometimes caused by a mutation in the CDH1 gene. These stomach cancer cells are diffuse, meaning that they are widely spread or scattered throughout the stomach, making it nearly impossible to detect them at an early stage. The recommended treatment to prevent the development of this aggressive form of stomach cancer in CDH1 gene mutation carriers is prophylactic (preventive) total gastrectomy – complete removal of the stomach. People with other types of stomach cancer may also undergo total gastrectomy as part of their treatment plan. Total gastrectomy is also performed to treat some non-cancer medical conditions. The reconstruction that follows total gastrectomy is referred to as Roux-en-y.”  Did you get that?  It said complete removal of the stomach is the treatment! 

  

So now to the Doc next week to see how to proceed.  Vonnie will be seeing her breast surgeon that ordered the test and we assume that she will be referred on from there.  Our girls plan to attend because it is genetic and could very well be passed on to them (and/or our son). We also will try to determine which branch of the family this was passed on from, her mother or father, so other relatives may be informed and hopefully get tested.

OK - Appointment with Doc went well.  We were told the test showed the CDH1 gene was a  variant of uncertain (or unknown) significance! This is good news so we are told. No further testing for family members and nothing to be done (at least for now). 

Vonnie had her surgery today.  Latissimus Dorsi Flap procedure.  The surgery took 5 hours and all went well.  We will be in the hospital for 2 to 3 days.  She is currently on  heavy pain meds and resting. 

UPDATE: 
It's been a few years since the last post.  Vonnie has had all great checkups.  Just had an ultrasound done and all is clear.  There is one issue however.  The radiation she had caused capsular contraction around one of the breasts and has been causing tightness and pain.  She is going in tomorrow to"re-do" the reconstruction.  She will have a Latissimus dorsi flap breast reconstruction.  The surgery should take around three hours and a three day hospital stay.  We pray all will go well.  Len

Reeling and Healing Event

I just attended a Reeling and Healing Event. It is a 3 day event for women in various stages of cancer treatment. It was held in Grayling, MI on the Ausable River. We were shown how to fly fish and then were teamed up with a guide that worked one on one with us. I landed my first and only trout soon after getting in the water the first day. What an awesome feeling. I can't wait to go out again and am making plans to do just that with my brother, Brad. I was able to attend with 2 good friends from our tandem club, CJ and Mary. This event was really emotional. We had 17 year survivors and those that were Stage 4 and really sick. It was hard to say goodbye to those that weren't doing well. I just hope that we helped to lift their spirits just a little.

Fish On is the slogan for the event and it has new meaning for me now. I went to the retreat thinking that it meant that we were being given a new sport to enjoy. I know now that it will always mean to me to relax, be at peace and enjoy the simple things in life.

CJ brought her son's fly fishing equipment with her and loved learning the sport that he had loved so much. Josh died 6 years ago from cancer just before she was diagnosed with breast cancer. She is a remarkable women that has been through a lot and I was really honored to be with her!

Almost done - final surgery over!

Sorry that it has been so long since my last update. Things have been going well for me. We have been getting some miles on our bike, now that the weather is getting warmer. We have surpassed 100 miles - not bad considering that we had less than 200 last year.


Our grandkids are really growing. It is so nice to be feeling better so I can spend more time with them. The babies are almost 4 months and 6 months old. They are starting to really develop their own personalities. How fun!

I have hair again. It came in curly and I love it. It is so easy to take care of!

I had my final surgery yesterday for reconstruction of my left breast and removal of my port. The surgery was an outpatient surgery and I was home by 11:30am. I am a little sore today, but not bad. It feels so good to say that I am almost done with this entire journey. I have 3 more Herceptin infusions that will now be given by IV. The last one is June 7. Yeah!

Our kids got me the beautiful flower arrangement and candle pictured. I have the best kids (and in-laws) in the world!

We are busy filling up our calendar with activities for the summer. We have one week in Door County Wisconsin for a bike tour, one week camping in July and 2 1/2 weeks for a trip to the Netherlands. Yes - on with life!!

What a difference a year makes!

It was one year ago today that we were sitting, nervously awaiting the results of my biopsies. We have been through a lot over the past 12 months, but are now looking forward to many good times ahead, thanks to God's healing hands.

I am sorry that I haven't kept my blog up to date. I have been feeling almost like my old self again. I still have radiation pain/burn that I am dealing with under my right arm. It is amazing how long it takes to heal, but it seems to be improving (minutely) every day.

I had my 11th Herceptin infusion yesterday. I have 6 more to go and then I will be able to get my port out. My last infusion is scheduled for June 7. The reconstruction of my left breast has been delayed due to major medical treatments that my plastic surgeon is getting. He hopes to back to work late March to early April. So tentatively I am hoping for an early April surgery. I would just like to get this all behind me, so that I can have a great summer!

I had my physical with my primary care doctor yesterday. After reviewing my recent year, he feels that I am currently one of his healthy patients. That is quite a change from this time last year. I have come a long way!

Of course, I have to share a few new pictures of our youngest grandchildren. Hailey is now 3 months old and Katelyn is 5 weeks old.

God's precious miracles

We were blessed once again with the birth of another grandchild. Katelyn Elizabeth Besteman was born last night at 10:55 pm. She weighed in at 7 lbs 6 oz and is 20 inches long. Robyn had an easy, short labor and both her and baby are doing well. We give thanks to God for blessing us once again. He has truly been there for our family this year!

The picture on the right is of Hailey meeting her cousin for the first time. Hailey is now 2 months old and weighs 10 lbs 10 oz. Check out the Calvin College t-shirt that she has on.

Merry Christmas

We would like to wish you all a very Merry Christmas. We have been so blessed this year and this is a good time to sit back and thank God for all of those blessings.

I had my third surgery for the year on Tuesday. This time it was minor/outpatient surgery for a torn meniscus on both sides of my right knee. The surgery went really well and I am taking it easy with my leg elevated and iced periodically during the day. I am looking forward to pain free walking so that I can start to get back in shape for our next biking season.

Our vacation to Florida was really pleasant. We had great weather and lots of relaxation. It was a much needed break. Many thanks to Jerry and Marge Mathias and Steve and Kris Parker for putting us up for several nights. We also spent a week on Treasure Island with Len's sister (Marge) and brother-in-law(Mike). The attached picture was taken on the beach in front of the suites that we stayed in. I guess this is the closest Floridians get to having a snow man. What more could you ask for - great weather and great family and friends. I guess we could have asked for a longer vacation and more friends joining us! Maybe next year.

We are still waiting for our 5th grandchild to be born. Robyn and Dustin's second child is due December 26 and looks like it won't be coming early. They just hope that they get the extra tax deduction.

Have a Blessed Christmas!

Happy Holidays!

It is hard to believe that it has been 4 weeks since I finished radiation. The burns are finally feeling better and my energy is increasing. I have been working a few hours - trying to get a hang of the new computer system. It is really going to take a lot of work to feel comfortable. The other employees have been working on it for 6 months now, and are still struggling. Ugh! It does feel good to be getting my life back to normal though.

My hair is finally starting to fill out. I even got a little trimmed off this week to even it up. With the cold weather coming I am thankful to have hair!

Next week we are celebrating my 54th birthday and completion of treatment with a vacation in Florida. It will be so much fun to sit back and enjoy life! We have had a rough year - but now are done with the worst of it. I still have Herceptin infusions every 3 weeks and follow ups with my oncologist every 3 months, but am happy to be done with the rough stuff!

I went to an orthopedic doctor on Monday. I have been having a lot of pain in my right knee. In 2001 I was diagnosed with a torn meniscus, but with all our bicycling it hasn't bothered me until now. The surgeon said that I have also developed arthritis in that knee - probably due to the same injury. We have scheduled surgery for December 22 to have the meniscus repaired. I hope that I heal quickly since our daughter is due to have her baby on the 26th and of course we want to enjoy Christmas with the family. Len had the same surgery in February and was virtually pain free after the first day or so. I hope the same holds true for me.

Our granddaughter, Hailey is doing great. She is 5 weeks old and still as cute as ever. I am waiting for her newborn pictures to come in so that I can post some.

I wish you all a Merry Christmas and a Happy New Year! Hope that you all take time to really enjoy this season. I have learned this year to be very thankful for all God has given me. Serious illnesses can really make you stop, evaluate your life and appreciate what you have.

Back on the bike again!

Thanks to the great weather the past 2 days, we were able to get out on our tandem. It really feels great to feel good enough to get a few miles on before winter hits. We rode 2 short rides on the White Pine Trail - logging a whopping 35 miles. I know that doesn't sound like much to many of our friends, but I haven't been on the bike since the first of June. Unfortunately, it won't be long before the snow starts falling. We are definitely looking forward to next spring!

It has been 6 days since my last radiation. I am still feeling pretty burned. I think that this is going to be a long time healing. My underarm area has peeled and is quite raw at this point. I thank God that they stopped with 28 treatments instead of going for 33!

I have been trying to work my way back into working part time again. They installed a new computer system while I was off - Ugh! I feel so lost. My stamina isn't the best yet, so I am limiting myself to 3 hours at a time in the store. It doesn't take me long to feel really "brain dead". Now I know what all the complaining about the new system was all about. It is very labor intensive, but seems to have some good points. It is just a lot to learn.

Give thanks for all that God has done! He has really been there for us! We have never felt so blessed!

Last Radiation tomorrow!!!!!!!

I got great news today. My last radiation is tomorrow instead of next week, Wednesday. I don't know why they changed my therapy - but I am so glad to be almost done. I have an appointment with my radiation oncologist tomorrow, so I will find out then. Give me a week or so to recover from the burns and then I plan on doing major celebrating!!!!!

Attached are a couple of pictures of our new granddaughter. Both mom and baby are doing fine.

Len, Julie (our oldest daughter) and I volunteered at the DeVos Children's Hospital Halloween Party. We had a great time!

Baby Hailey is here!!

Our newest grandchild was born this morning. Her name is Hailey Elyse. She is a healthy, beautiful girl. She weighed in at 8lbs 15oz. After 19 plus hours of labor, Julie had a pretty traumatic C-section but her and Hailey are doing well now. Jason (our son) said that Julie was able to feel the entire procedure and was in agony. I cannot imagine how rough that would be. We thank God for keeping them both safe.

Today was my 21st radiation. I have 12 more to go. I saw my surgeon today and she drained some fluid off my left side. It has been accumulating since the drain was removed 4 weeks ago and was becoming inflamed. She sent some fluid off to be cultured, but said that it really didn't look like I had an infection. She did put me on an antibiotic, just in case.

Our granddaughter is due on Thursday. The ultrasound last week showed that she is over 9 pounds. The doctor said that they plan on inducing her if she doesn't come on her own by November 1. So, Hailey should be here by early next week at the latest. Can't wait! Our family has been hit by the flu bug, so I hope that everyone is better by then. I have kept my distance - I do not want it!

On Friday, Julie, Len and I are hosting a table at the DeVos Children's Hospital Halloween Party. Caleb (our oldest grandson) was in the hospital on Halloween a few years ago and it meant a lot to him that he could celebrate in a small way at the hospital. Len and I are going to dress up as clowns. I will post some pictures after the event.

Pumpkin Patch

Today was a great day. It was the first day in quite some time that we have had a mostly sunny day. It really helps to improve the mood! We spent the afternoon with most of our family and 2 of our grandchildren enjoying the season. Unfortunately Caleb, our oldest grandson was running a temperature so he and his mother (Julie) were unable to join us. We went on a hayride, through a corn maze and then spent a long time picking out just the right pumpkins. Braedon (our youngest grandson) kept telling us they were all too heavy. Hunter was able to find one right away, so Uncle Jason had to carry it around for quite some time. Then just as we were going to get on back on the hayride Hunter changed his mind and wanted a different pumpkin!

I am glad to have a couple of days off from radiation. I have had 15 treatments and have 18 to go. It has really gone faster than I expected. My skin has "pinked up" and has that tight sunburn feeling, but overall I have been feeling a little better than I have in the past few weeks.

Jason and Julie's baby is due in 2 weeks. She will be having another ultrasound on Thursday to try to determine the size of baby Hailey's head. I think they are trying to determine if she will need a C- section since the baby is already believed to be over 8 pounds. It looks like it won't be long before we finally have our first granddaughter. I have had a lot of fun buying little girl things for her and our daughter Robyn's baby.

Radiation progress

There is really nothing new to report. This picture is of me being set up for my treatment. The treatments only take 10-15 minutes, every day Monday through Friday. I have had 8 radiations and have 25 to go. So far there hasn't been much change. I have started to "pink up" a little and my skin feels tight like you would have with a mild sunburn. My energy hasn't changed much - I still tire easily. I have been told that my energy will decrease even more the farther into treatment I get. Oh well, the end is in sight! I had an appointment with my plastic surgeon yesterday and he is looking forward to getting started with the left side reconstruction. We have to wait until the radiation is done before anything can be done, but then let the magic begin.

Len and I were able to walk around Art Prize in Grand Rapids yesterday for a few hours. It was really nice to see all the fantastic art that is in and around the area. What a great event for the community.
I am beginning to really dread the thought of winter setting in. I hope to be feeling good enough to get back to work before the really bad weather sets in. The days are really long when Len is working his 12 hour shifts and I would really like to be able to join him behind the counter a few hours a week. The only thing that I am dreading about going back to work is learning the new computer system that was installed while I have been off.

Radiation started and drain removed

I started radiation yesterday. They told me to get aloe vera gel and aquaphor to apply 2-3 times per day. I feel like a greased pig. The aquaphor is an ointment that is made up largely of petroleum jelly (vaseline). They told me that it will not stop the burn from occuring, but will make me more comfortable. So far I have no feeling that they have done anything - with the exception of soreness in my right arm. I am hoping that it isn't causing lymphedema to develop this quickly.

My trip to the plastic surgeon was today. He removed the drain. Yeah!! I really didn't expect him to remove it since there still was a lot of fluid draining from it, but he was more concerned with an infection developing if it was left in for too long.

Julie (our daughter-in-law) had another ultrasound today. They were concerned about how large she is getting. She hasn't gained that much weight, but her tummy was measuring 5 weeks ahead. The ultrasound shows that baby Hailey is just on the big size. They are estimating that she is already around 7 1/2 pounds and her due date is still over 4 weeks away (October 29). There isn't much chance she is going to go past her due date. Julie and Jason didn't want her to be born on Halloween anyway!

Susan G Komen Walk

Yesterday was my first Susan G Komen Walk. I had no idea what a huge event this is. Our team raised over $1200 for the cause and the total for that was raised by all was over $400,000. Wow! It really felt great to be there with all of the supporters. The picture on the left is a group picture of the survivors. The one on the top is of me and my friend Ellen VanOssen who I met this spring. She just turned 30 and is battling this disease. I was really surprised at how many young women were in survivor shirts. It really shows me that this is not an older women's problem it is a problem for all women (and men) and we need to find a cure now so that no one else has to be touched by this. Thank you to all that supported our team. The following is the picture of our team.

As for my progress, I start radiation tomorrow. I will be seeing my oncologist, getting my 5th infusion of Herceptin and then have my first radiation. It will be a full afternoon. I have my next appointment with my plastic surgeon on Tuesday, but at this point it is unlikely that he will remove the drain. I hope to get it out soon - it will be 3 weeks since my surgery on Tuesday and I am really getting tired of it.

Radiation

I had my appointment today to prepare me for radiation. It was a lot more involved than I thought it would be. They made a mold for me to lay on to position me the same with each radiation and also a mold of my right breast so that they can concentrate the radiation on the breast skin and not the reconstructed breast area. It reminded me of the molds that they make of pregnant women's tummys. Len joked that I could probably keep it when they were done with it. No thanks!

My radiation starts on Monday, September 28 for 33 sessions. They will only be around 15 minutes long, Monday through Friday. My final day of radiation will be November 11 (Veteran's Day). I definitely will feel like a veteran of this ordeal by then.

As far as my hair is concerned - I never really lost everything so it is hard to tell how much growth I have gotten. I do feel that it is thicker and somewhat darker (less gray mixed in). Still not ready to go without my hat except at home.

I am still dealing with a drain and loss of energy - but with surgery behind me I hope to be getting the energy back soon. For all you MUTS that are planning on being at Jerry and Marge Mathias's tandem ride on Saturday - I plan on being in the sag wagon with Jerry. Marge is going to be Len's stocker - watch out Jerry, you may not get her back on a "wedgie" (Jerry just had knee surgery, so he is banned from the bike for a while).

Enjoy the weekend - looks like we are in for more normal temperatures starting next week. I sure wish we could retire to Florida for the winters. This winter in particular looks like it may get interesting.

Addendum from husband: She also got tattooed so that the radiation can be precisely focused and I now get to ride our bike with a "Tattooed Biker Mama"! Woohoo!!

Great News

My pathology report on my left breast showed no signs of additional cancer. Yeah!!! This is really exciting for me since it means that no further surgery or radiation is needed on that side! My surgeon said that everything is looking good - a little flat at this time, but my plastic surgeon will do his magic and I will have perky breasts again. Not many women at 53 years of age can say that! I still have a drain in the left side, but that too will be removed when the fluid levels decrease. As I have said many times before - God has truly blessed me!