Marilynn's Passing

The world lost a beautiful life this week. On Wednesday, May 4th, Marilynn returned home to her loving Heavenly Father. She was surrounded with family and left peacefully. Although we will greatly miss her presence, we are comforted to know she is free from pain.

As seen with the latest blog post, the last few months have been challenging. However, in spite of the immense pain she felt, Marilynn was able to work on her life history and spend time with her husband and children. Marilynn was not one to complain—even when the pain became unbearable. She left each of us with a powerful example to continue running through life with a positive and joyful attitude. 

Thank you all for your kind words, uplifting thoughts and prayers. We have all felt uplifted by your sentiments. Arrangements are being made by the Pierce Funeral Home, 9609 Center Street, Manassas, Virginia. Please follow their website for funeral information and obituary: http://www.piercefh.com/. In lieu of flowers, we encourage donations to the American Cancer Society in her name: https://donate.cancer.org/index.

 A viewing will be held Sunday, May 8th from 5:30-7:30 PM. An additional viewing will be available on Monday, May 9th from 11:00-11:45 AM. A funeral service will follow at 12 PM. Both the viewing and funeral will be held at The Church of Jesus Christ of Latter Day Saints, located at 2719 Hunter Mill Road, Oakton, Virginia 22124.

Below is a photo taken last Saturday, April 30th, of Justin, Marilynn & Steve cheering on a local 5K. Marilynn was excited to cheer on the runners as the route ran right past their house.

Love, Steve, Troy, Stephanie, Justin & Stacey

Difficult Times

            The recent developments with my cancer have been very difficult.  As I mentioned in my prior blog, my clinical trial was not successful.  Since then, we have been reviewing one other chemotherapy treatment with my oncologist.  With the low likelihood of success and the challenging side effects of this treatment, we have decided not to pursue it.  I am now working with a palliative care/hospice service to assist me with my pain medications and other needs.  I began that service last week and I believe they will be helpful with my future care. 

            My pain continues to be a challenge.  In addition to the severe abdominal pains that have been occurring for some time, I am experiencing a lot of swelling in my abdomen and legs.  I have gained nearly 20 pounds of fluid.  Thus, my clothes don’t fit me anymore.  The swelling prevents me from taking walks and running, which is very discouraging as these activities were so important to me. I also find it difficult to go places and to do things that I used to like to do.  My nausea is also continuing.

            These developments have caused me to be even more grateful for my wonderful family and friends.  My two daughters, Stephanie and Stacey, came to visit me this past weekend.   Steve and I had planned to go to Ohio to see Stephanie’s family’s new house, but as I was not feeling well enough Stephanie came to our house.  Stacey just surprised me when she came from Houston.  It was a wonderful treat to have both of them here.  We were so busy laughing and crying that we did not take a picture of us.  Thus, I am including a picture of us together last Christmas. 

            A song that gives me strength not to falter in my race of life is “He Hears Me,” which is sung by Hillary Weeks.  The words are as follows:

“Here I am again down on my knees and with every pleading word,

Thy comfort I seek though the words are slow to come,

My thoughts are racing by,

Peace feels the room,

Thy spirit is nigh;

He hears me when I am crying in the night,

He hears me when my soul longs to fight till the morning will come and the light of the dawn reassures,

He hears me.

Any hour, wherever I may be,

In the silence of an empty room,

Or on a crowded street.

Whether offering thanks or urgency I pray,

I never go unnoticed; I am never led astray;

He hears me when I am crying in the night,

He hears me when my soul longs to fight till the morning will come and the light of the dawn reassures.

He hears me.

Any whisper of the soul no matter how old, Father hears the call.

He hears me when I am crying in the night.

He hears me when my soul longs to fight;

Till the morning will come and the light of the dawn reassures.

He hears me.”

I know Heavenly Father hears my prayers.  I have felt His spirit with me as I am running this difficult race of life.  I could not run this race of life without Him.  I also really appreciate the many prayers that family, friends and others have offered for me.

Unsuccessful Clinical Trial

April 11, 2016

            On Monday, April 11, Steve and I reviewed with the oncologist at Georgetown Hospital my first CT scan taken after beginning my clinical trial for the immunotherapy treatment.  Unfortunately, the scan results were very disappointing.  My cancer continues to grow and to spread to new areas in my body.  With this disappointing scan result, I am not able to continue in this clinical trial.  I am sad and disappointed with this outcome.  I had high hopes that the clinical trial would work, even though I recognized from the beginning that it might not be successful.  When I began the clinical trial, the doctor had advised that the trial was working for about 60% of his patients.  I had hoped that I would be in that successful group rather than the 40% for which it was not working.

            The oncologist said that he had discussed the results with my original oncologist at Virginia Cancer Specialists.  He recommended that I consider one more chemotherapy treatment that I have not tried yet.  I am scheduled to meet with my original oncologist on Wednesday, April 13, to discuss beginning this chemotherapy treatment.

            Although the CT scan results were disappointing, I was not totally surprised by these results.  I have felt very sick lately.   During these past few weeks, my pain and nausea have gotten worse.  I have edema (swelling) around my abdomen and in my right leg.  This has been very painful as it has caused me to have backaches and has affected my breathing.  As a result of these problems, I have not been able to walk much.  I also still experience severe headaches.  We try to balance the pain medication so I don’t take too much as my body cannot handle a lot of medication (have to be careful to avoid overdose).   Also, the pain medicine has not been as effective lately.  I don’t like the effects of the pain medicine as it makes me very tired.  I am following up with my palliative doctor to see what other pain medication options exist.

            Fortunately, I have felt a lot of support from my family, immediate and extended, and my friends.   For spring break, I was visited by Stephanie, Lee, their family, Justin and Stacey (Thanks Brock for sharing Stacey).  I was able to do at least one activity with them each day.  I also liked spending time visiting with each of them.  I really appreciate that all my children call me on a regular basis even though they live far away.  I was so touched when my children created a running activity each month to support me in my battle with cancer.  Running has always been important to me, even though I have not been able to run much lately.  I love to hear the report of Troy’s and Katie’s monthly races.  All of these activities inspire me.

  

I have always been inspired by music.  As I struggle with my cancer, I am reminded of the following words from the song “He Hears Me” sung by Hillary Weeks: 

“He hears me when I am crying in the night,

He hears me when my soul longs to fight,

Til the morning will come and the light of the dawn reassures, he hears me.”

I also recently read the following quote: “From the bed of pain, from the pillow wet with tears, we are lifted heavenward by that divine assurance and precious promise ‘I will not fail thee, nor forsake thee.’ (Joshua 1:5)” 

            This song and quote express well my feelings that Heavenly Father hears my prayers and gives me comfort and peace as I face my cancer challenge.  Thanks to everyone for all of your love, prayers and support.  It means a lot to me.

Approved for Clinical Trial

I am very excited that I have been accepted for a clinical trial at the Georgetown cancer center.  The investigational drug is Avelumab.  According to the study report, Avelumab is thought to maybe have an effect on the immune system (especially the white blood cells) in order to cause the immune system to attack the cancer tumors.  The study is to determine whether the drug is effective in gastric cancers.  On February 16, I went in for initial testing to determine my eligibility.  They took 10 or so vials of blood and conducted a CT-scan.  It was an extremely long, exhausting day, but it was well worth it.  I began the treatment at Georgetown Medstar Hospital on February 29.   It was a long day.  I started with blood tests and an EKG, then met with the oncologist, followed by an infusion, and finally had another EKG.  Overall, it took about 7 hours.  The staff at the hospital was great.  They were well organized and very kind.

 I am really thrilled to be in this clinical trial as I have exhausted all of the other treatments for my cancer.  Also, I really have not felt well this past couple of months as the cancer has spread.  The fluid has expanded in my abdomen and around my lungs.  This has caused me to cough a lot more and to be short of breath.  I have been extremely tired.  I could sleep all day, but I don’t let myself do that because I feel that it would make me very discouraged.  My body aches and the nausea continues.  This has made exercising far more difficult.  I still try to walk three miles at least 4 times a week if possible, but I find it difficult to run because of my lungs.  Again, I just hope to get some relief with this with new treatment.

Even though I am very excited for the clinical trial at Georgetown, I am saddened not to continue to receive treatments at the Virginia Cancer Specialists’ office.  The doctors, nurses and others have been very kind to me as I received my treatments there, including the many infusions.

One thing that lifted my spirits this past week was the visit from four of my sisters, and a brother–in-law.  One sister was not able to come.   While visiting me, my sisters took great care of me.  I had hoped to go shopping because that is something we enjoy doing together.  However, as I was not feeling well, we shopped a little bit, but spent most of the time at home.  We visited, laughed and cried a lot.   We also watched a few movies together.  I feel so blessed to have such wonderful sisters.  A highlight was receiving massages from them on my back, hands, head and feet.  In fact one time, they were working on all of these areas simultaneously.  It felt so wonderful as they used their hands to serve me.  I was reminded that we help our Heavenly Father when we use our hands to serve others.  I have felt many peoples’ love as they have served me with their hands.

My sisters’ service was like angels.  I really like the following quote from Elder Jeffrey R. Holland.  He said that God never leaves us alone:

“I testify of angels, both the heavenly and mortal kind.  In doing so I am testifying that God never leaves us alone, never leaves us unaided in the challenges that we face… Always there are those angels who come and go around us, seen and unseen, known and unknown, mortal and immortal.”

In my life, I have felt such angels, both mortal and immortal.  These experiences have increased during the past six months.  I am grateful to have had these angels help and comfort me.

Discouraging CT Scan

In my last blog update, I mentioned that I was going for a CT-scan on January 28.  Unfortunately, the results of that scan are not encouraging.  The cancer has grown in my abdomen and around my lungs.

 I have not felt as well lately, part of the reason being that the cancer has caused me to have more fluid around my lungs and in my abdomen.  Eating has become more difficult.  Even though I spread my eating out over the day and eat small amounts, I often feel too full to eat.  My stomach just won’t handle very much.  I get very nauseated.   I try hard to eat right, but the food often just doesn’t stay down.  With the fluid around my lungs, some nights I cough a lot even to the point of throwing up.  I get out of breath when I exert myself.  I also find it more difficult to breathe at night.

We met with my oncologist and decided to discontinue my current chemotherapy regimen.  We agreed the best approach going forward is to try to find a clinical trial for me.  We have identified one potential trial at my oncologist’s office that will be open on February 22.  We have also scheduled an appointment on February 9 with an oncologist at the Lombardi Comprehensive Cancer Center at Georgetown Medical Center.  He has a few trials that he wants to discuss with us.  I hope to qualify for one of these trials as soon as possible.

To keep my spirits up, I am still trying to walk as often as I can.  Also, I had a really enjoyable weekend with Stacey, Stephanie, Lee and four of our grandchildren.
I was able to join them for the play Phantom of the Opera.  My family support means so much to me.  It really lifts my spirits.  Whether through telephone calls, visits or texts/e-mails.

I am including a quote from the Ensign magazine titled “The Will Within”.  It is about running, which has been an important part of my life.   It reads as follows:
“Each of us is a runner in the race of life.  Comforting is the fact that there are many runners.  Reassuring is the knowledge that our eternal Scorekeeper is understanding.  Challenging is the truth that each must run.  But you and I do not run alone.  The vast audience of family, friends, and leaders will cheer our courage, will applaud our determination as we rise from our stumbling and pursue our goal.  The race of life is not for sprinters running on a level track.  The course is marked by pitfalls and checkered with obstacles…”
I liked this quote because it recognizes the obstacles that exist in life and the importance of support of family and friends.  I really appreciate all the love and support that I receive from all of you.  Thanks for your help, support and prayers.

Christmas Holidays

The Christmas holiday was wonderful.  Our family met at Park City, Utah for Christmas week.  Even though it was cold, we had lots of fun skiing and tubing.  For me, it was exciting as I was able to go skiing one day and tubing one day.  Even though I did not feel well, I was still able to do those activities with the family.   It took a couple of hours for me to get ready to go skiing, but after I made one run, Steve said “ it is all gravy now as you have succeed being out here”.  I was able to make a few more ski runs.  Overall, I was really happy to able to ski.  It was definitely worth the effort and pain.  It was absolutely wonderful to have been with all of our children and grandchildren for Christmas.  My niece, McKenzi, took fabulous family photos with a wonderful view from the Park City cabin in which we stayed.


Another treat while we were in Utah was seeing many members of our extended family.  A special treat was when the Felt family (my siblings and their children) met at Theresa Felt’s house in Park City.  I was able to spend time with many of my brothers and sisters and was happy to see so many of my nieces and nephews and their children.  We had a wonderful night together sharing pictures, books and stories.   We also saw some of Steve’s family, and appreciated Steve’s sister, Cheryl, allowing us to stay in their house in North Salt Lake for a few days.



In January, I returned to my bi-weekly chemo treatments.  Even though it is not fun to go for such treatments, I really appreciate the kindness and courtesy shown by those who administer these treatments.  I have gotten to know the nurses and staff quite well, and they show real concern for me.

I am scheduled to get another CT-scan this week.  It will be good to check my progress again.  We will review the results with my oncologist next Tuesday, February 2.  Even though I was blessed to be well enough to enjoy the Christmas holidays with my family, it was really difficult at times.  I still have a lot of pain in my abdomen.  Lately, I have had more nausea.  I still have headaches some days.  Eating remains a challenge due to my prior esophagus surgery.

I have felt discouraged at times.   This leads me to have an occasional “pity party” for myself.  The best way I have found to deal with this is to try to improve my attitude.   As President Monson said, “So much in our lives depends on our attitude.  The way we choose to see things or behave or to respond to others makes all the difference.  To do the very best we can, then choose to be happy about our circumstances, whatever they may be, can bring peace and contentment.”  I am very thankful that I have been blessed during this difficult time to help me have a good attitude.  I receive many tender mercies on a regular basis.

ENCOURAGING CT-SCAN RESULTS

December 9, 2015

I had another CT-Scan to check on the effectiveness of my current chemotherapy treatment.  On December 8, we reviewed the results with my oncologist.  Overall, the results were very encouraging.  The primary finding is that, since my last CT-Scan at the end of September, my cancer has remained stable rather than continuing to spread.  In fact, in the area around my lungs, the cancer has reduced slightly.  Thus, reducing the irritation in that area.   I will continue on the same treatment plan until my next CT-Scan two months from now.

I am so thankful for these encouraging test results.  I feel very blessed.  I have been feeling a little better lately.   However, I continue to have pain in my abdomen most of the time.  The headaches and nausea have been reduced some. Challenges continue due to my prior surgery.  I continue to experience a lot of acid reflux each night.  Eating remains challenging, as I need to eat small amounts frequently.  It is hard to identify what is causing my pain.  At times, I cannot distinguish whether it is coming from the cancer or from the changes in my stomach related to my prior surgery.

To keep up my energy and my emotional well being, Steve and I have been walking/running three miles most days, and we have been writing my life history.  These activities have lifted my spirits.  I have also been strengthened by the wonderful encouragement from my family and friends.  It was great having most of our family visit us over Thanksgiving.  My grandson, Taylor, even shaved his head to match my bald head from the chemo treatments.

I am enjoying the Christmas season.  I am grateful for the Savior.  At Church last Sunday, we sang “Away in the Manager”.  I love the third verse, which reads as follows:

“Be near me, Lord Jesus; I ask thee to stay

Close by me forever, and love me, I pray.

Bless all the dear children in Thy tender care,

And fit us for heaven to live with Thee there.”

Best wishes for a Merry Christmas.