Discussion Forums



True Grit 
Started by Acajun
22 Jan 2013, 2:46 AM

As many people did last night, I too tuned in to watch Lance Armstrong's interview with Oprah. At the end of the interview, I felt compelled to add a few words to the LIVESTRONG site! For me, Lance Armstrong will always remain a HERO in my eyes, because for me it was not about the bike but the fact that he survived cancer and the many challenges that he faced.  He chose to form the LIVESTRONG foundation to help others and that he has done. I see beyond the doping scandals to which he is not the first and is one of many to try to be the best in the world. As a society we have bought into this and when someone fails us we tend to bash them. I personally do not agree with doping but the fact that Lance survived cancer is a very factual event and I choose to separate the two.

 

I would like to add that I am not a writer and there may be many grammatical errors, but I am very passionate about our journey and am willing to share this story if it can help one person have courage, hope and strength to carry on in their journey. I chose to entitle it True Grit because it involved a lot of true grit during the course of this journey and way too long to share in this posting so I will try to highlight the main parts of Mike's life with cancer.

 

My journey with cancer began on June 15th, 1998, when my soul mate was diagnosed with Non-Hodgkin's Lymphoma. My husband, Michel (Mike) d'Entremont had not been feeling well for some time and suspected that something was terribly wrong in his body but didn't want anyone to know so as not to burden his family and I guess just slip away!! I think he forgot for a moment that he was married to me and that I had no intention of letting him slip away from us that easy! :)

After seeing him not feel well, I decided to call and make the appointment that he kept putting off and after a host of tests, it was determined that he had Non-Hodgkin's Lymphoma (NHL).   I asked the doctor what the difference was between NHL and Hodgkin's and he replied, "There's a difference"!

 

I knew from that moment that to survive this we had to learn for ourselves and the computer became my best friend.  I researched and of course I didn't like a lot of what I was seeing and chose to keep a lot of the information from Mike so that he could focus on the healing process; this worked for us because he didn't want to hear the negative or dwell on what could be.

 

Before he was diagnosed, it was impossible for him to walk a short distance due to the swelling in his groin and the pain. Our first visit to the hematologist was unnerving for both of us, and the doctor soon told Mike that his CT scan looked like a Christmas tree because every lymph node in his body was cancerous and went on to add: "Mr. d'Entremont, I suspect that you have cancer in your liver, kidneys and lungs; as a matter of fact Mr. d'Entremont I suspect that you have cancer in every cell in your body"!

Mike turned a whiter shade of pale and then the doctor looked at me and told me that he hoped that I was not going to cry!!!!!!!!  As we left his doorway, he said to call me in 3 months to see how bad "it" (the cancer) has become!

In the meantime, we see a holistic doctor who encourages Mike and explains how to boost the immune system to handle the chemo and also explained that he wanted Mike to get hit long and hard with chemo and that his change of diet and supplements would help him handle the chemo better, which it did - his WBC dropped from 42,000 to 24,000 with the use of these methods.  Needless, to say we never saw that first hematologist again!

 

There were many appointments and we were a 3 hour drive from the hospital and his doctors, so I would read inspirational stories on our drives and we would listen to tapes together that told of courage, hope and endurance. Mike began to meditate and envision himself well. We joined a Living with Cancer support group and eventually became facilitators. Mike had a great sense of humour and was very open and honest with his feelings and people were in turn very open and our group thrived.  We also took palliative courses and grief share courses to help us better understand the lives of our support group members.

 

I mentioned that he could not walk because of the swelling in his groin, so after he began to feel better I asked him to go for a short walk which would be beneficial both mentally and physically and so daily we walk and each day strive for the next telephone pole and one day after I saw that he was able to go further, I challenged him - that I could beat him to the next telephone by running and always up to the challenge he accepted and in fact beat me and each day thereafter we strived for a longer distance and in Sept, three short months after being diagnosed we both ran the Terry Fox Run of 10 km. with neither of us having any previous experience with running.

 

Eventually, fluid filled his the lining between his lungs and he went twice weekly to have this fluid removed 1-2 litres at a time and then after months of this he needed to have a double plural E-Vac where he remained in the hospital for a month and came near death. He was determined to get back home as he had plans of his own. He wanted to build one more home as carpentry was both a trade and a passion for him. So between chemo sessions he indeed built the home of our dreams by the ocean and did most of the work himself.

 

He received 3 years of chemo, each time bouncing back despite the doctor's prognosis and he was determined to stay strong. Eventually, the cancer turned aggressive and we were told that he would need a stem cell transplant. It was around the time of his birthday so I decided to throw a huge birthday bash for him as a surprise and rented our local fire hall and invited all of our friends and family. Over 250 people jammed into the room to wish him well and gave him cards and words of support and to the surprise of the doctors his stem cell transplant was delayed for another year due to remission.  He always credited this to the fact that so many people poured out their love and support to him and made a huge positive impact on his body!

 

The following year the cancer had now attacked the esophagus and the stem cell could no longer be held at bay. The GP called to deliver the news that indeed it was back and that he was to be at the hospital the following Monday. The following is the conversation that followed between Mike and his doctor! Mike: "I can't make it this Monday as I am going to Australia for 3 weeks" - Doctor: " I don't think you heard what I said" - Mike: "I heard you, you didn't hear me, I am going to Australia for 3 weeks and I assume that the cancer will still be here when I get back"!!  We did go to Australia again showing the true grit that he had.

 

Before receiving the stem cell he had to have bone marrow tests to determine which type of stem cell he would receive, as the doctors prepare to extract the marrow, I am asked to leave the room to which I reply, "I would rather stay and hold his hand, he is the one that is going through the pain of this and the least I can do is be here to support him".  They allowed me to stay and hold his hand as his face wrenched in pain.  Luckily he was able to receive his own stem cells which meant that he had to go through two sessions of chemo for 48 hours straight before receiving the stronger doses that would kill his bone marrow.

 

He was in isolation for 19 days and I stayed with him during this time and watched as his WBC dropped to .01 and remember the joy and elation the next day, seeing the nurse's post on the big bulletin board that his WBC was slowly creeping up and continued daily thanks to growth hormones.

 

Mike remained in remission for a few years after this, but was left with so much scaring that he was unable to eat properly for 4 years. He was put to sleep over 30 times to have dilations of his esophagus to enable him to eat for a couple of weeks and then the food had to go to mush and then liquid and by the time the next dilation would happen, he could barely swallow his own salvia.  In this time he showed grit and determination that he would one day eat again. A week before the dilation he would watch the food channel to dream of what he would like to eat in that two week window.  He also prepared my meals so that when I got home from work, I had a hot dinner ready for me.  This was one of the most difficult things I had to do during those 14 years, eat in front of him while he could not swallow. He wanted to do this for me to show how much he appreciated the fact that I went to work every day. Another difficulty was for him to watch me shovel snow, which I did not mind doing, but he would stand in the window and cry as he felt that it was his job not mine.

 

Eventually, the dilations became more dangerous and at least half of those procedures the surgeon would hold my hand and tell me that he was fearful that his cancer was back but each biopsy would prove differently!  Mike decided that he wanted his esophagus cut off!! His words! He had enough of these dilations and not being able to eat so he asked the surgeon to have a gastric bypass but the doctor told him that it was virtually impossible because of the amount of scar tissue, so Mike gave him an ultimatum, either you do the job or I will find someone who will. I had been in contact with a doctor in the US, but once they saw how determined he was they enlisted the head of the thoracic surgery department to get involved and decided that there was little choice left and they knew Mike's determination and grit so the surgery was scheduled. Mike wanted to talk to someone that had gone through this type of surgery to hear their take on it. When he asked the doctor to speak to someone the doctor then had to tell him, that no one that he knew had survived, Mike said "I will be your first"! And that he was.

 

Complications arose from this surgery, he developed a form of COPD and was now in the palliative care system having VON visit daily to give him percussions to his back to loosen the copious amounts of phlegm that he was now experiencing.  He was a palliative care patient for two years but became tired of having to stay home daily waiting for their visits as his new passion was photography and he wanted to get out there with his camera and take photos so he told the doctor that he wanted to stop taking some of the pills that he was taking and this actually helped him because he was not so sleepy and because of this could move around more freely and actually increased his lung capacity and was the first patient to be released from Palliative Care for "Good behaviour" -  in his words.

 

In Feb. 2011, Mike was not feeling up to par and had a lot of pain in his back so numerous trips to the ER and x-rays showed that maybe his cancer was now growing in the area of his spine and within a few weeks he was hospitalized when he could no longer walk (which happened overnight) and the next day we were on our way with him to receive radiation (the first for him), to relieve the pressure on his spine. After 10 radiations the diagnosis was not good and we were told that this was nearing the end of the journey for us.  Despite that news he tried daily to stand and with the help of the therapists would try to take baby steps, but I could see the pain on his face and the pain in my heart was enormous and I told him that it was OK to go home, that he did not have to keep trying to stay here for us.  He passed away on March 19th, 2012 the day between two of his granddaughters birthdays and was surrounded by so much love.  He gave us one last gift - to die without suffering and no struggling.  He smiled his famous smile as he passed away in our arms!  He lived STRONG and my message to everyone is to do the best that you can do while on this journey, there is no measuring tape or scale to let us know how each person will deal with their pain and suffering.  The only thing as caregivers that we can offer is to love and support and stand by the choices that the person with the cancer makes.

 

I thank you from the bottom of my heart for allowing to write these words as I have not been able to put this to type in the past years. Three months after I lost Mike, I also lost my Mother to bone cancer, an uncle the same day as my husband and his wife a month and a half later and the year prior, my youngest daughter lost her 39 year old husband to a different type of illness. Our family has grown stronger and will survive because I believe that this story and so many others that are told make all the difference in the world to those that need to read stories such as this.  LIVESTRONG!    

Love to everyone that is going through their own journey, may you gain the strength, courage and the hope that you need.  Mary Ella d'Entremont xo

Report this post      
 
Reply by eKIM
22 Jan 2013, 2:43 PM

I was very moved by your words, Acajun.  You have a real gift for writing.

Before condemning Lance Armstrong, people should ask themselves the following two questions:

  1. What is the worst thing that I have ever done in my life?
  2. What if the world knew about this, judged me for it and ignored everything good that I did in my life?

I find it amazing that despite the seriousness of Mike’s cancer that he had so many years after he was diagnosed!!! Wanting to “keep it to himself” to protect his family is understandable to me.  Maybe it’s just a “male thing”, I don’t know.

When I read your story, I can see my wife reacting in the same way – being my rock of strength, while I might be weak.  That’s a soul mate.  Yes, my wife would do my research too.  Denial is a highly underrated coping mechanism.  I’m not talking about being intellectually dishonest.  It’s just that I’d rather let others take care of the details.

I wouldn’t want to spend too much time in a “negative space”.  I would want to get the most out of what time I had.  God, I hope I can do this when my time comes.  Who knows, I might just turn into a ball of mush.  Talk is so easy, when it’s not you, in the situation.

Wow, you were the facilitators for the cancer support group!   What amazing people you are!!!   I do believe that one way to take one’s mind off of one’s troubles is to reach out and help others who are suffering.  I really believe that to be true.

If you only ever share just the one story of Mike – making the meals for you – it would be enough.  It tells me so much about what a fine man he is.  I never say “was” because I believe that we will always exist – just in another form.  And yes we will reunite for eternity.

The medical details that you share are so interesting and tell such an amazing story of endurance in the face of such a huge challenge.

Like Mike, we have had a few people released from hospice to go back home.  It is rare, but it happens.

The supreme act of love in “giving permission” to a loved one to pass on, to go home is beautiful – although, not every family needs or wants this dynamic.  And yes, dying with grace is a wonderful gift to leave one’s family.  It can make our own “passing” much easier.

Each person faces their death differently and under different circumstances.  Acajun, you speak very wise words when you say:

“my message to everyone is to do the best that you can do while on this journey, there is no measuring tape or scale to let us know how each person will deal with their pain and suffering.  The only thing as caregivers that we can offer is to love and support and stand by the choices that the person with the cancer makes.”

This is what I try to do as a hospice volunteer.  Your words strengthen me. You say, “I thank you from the bottom of my heart for allowing to write these words as I have not been able to put this to type in the past years. Thank you so much for sharing your story with us, Acajun.  We are greatly enriched. 

In your next posting on VH, can you share with everyone how and why this was a good thing for you to do?  Personally, I have always found writing and sharing to be very helpful, healing, even cathartic.

- eKim
 

Report this post      
 
Reply by moderator | modératrice
22 Jan 2013, 4:00 PM
Dear Acajun,

Welcome to the Virtual Hospice community.

As eKim and others on the forums have said - simply writing and sharing can help the healing. Your words will help others. And I'd like you to know that you are not alone. Members of our community are sharing their experiences, pain, sorrows and joys while caring for a loved one at the end of life and while healing and working through grief.

Here are some conversations you may wish to join and meet CarrieK, PPP, marstin, Lind, Nanalovesu, Liticia and others: Marstin too lost her mother shortly after losing her husband. I hope you'll connect.
Colleen
Report this post      
 
Reply by eKIM
22 Jan 2013, 4:41 PM

Hi, it's eKim again.  I just re-read Acajun's words.  Many people have written wonderful words on Virtual Hospice.  Acajun's story has touched me deeply.  Even though it is long, please take the time to read it all.  I know that you will be enriched.


"As we travel this journey called life we encounter times of darkness and our little candle seems much too small.  When we begin to despair, another soul comes along with their candle.  Now our path is illuminated twofold.  Not just for us, but for them too.  Always let your little candle burn brightly.  Sometimes you simply don’t know who you are helping – and it might just be you.”  eKim

Report this post      
 
Reply by marstin
23 Jan 2013, 5:04 AM
There are times in our lives when we feel like we don't want to take another step, that it's too difficult to keep moving forward. When I need support I turn to this site. Thank you so much Acajun for sharing your journey. It is so inspirational and deeply moving.

ekim, your words are beautifully written and so comforting.

Hugs,
Tracie
Report this post      
 
Reply by Acajun
23 Jan 2013, 3:01 PM
Thank you for your kind words! I realize more and more each day just what an inspiration Mike was to so many.  His spirit lives on and he is still helping others. Hugs to all! ME
Report this post      
 
Reply by eKIM
25 Jan 2013, 3:17 AM
That is so interesting Acajun, He certainly was an inspiration to many.  When I read your words, "His spirit lives on and he is still helping others." I immediately saw that you were not speaking metaphorically.  It is through you and your outreach to other hurting souls that "his spirit lives on and he is still helping others."  With every act of kindness, you must feel his presence.  Wow what a legacy.  He lives on through his soul mate.  Every woman should be so loved.  Every man would be blessed to have a love like yours.  - eKim
Report this post      
 
Reply by NatR
29 Jan 2013, 1:46 AM
Dear Acajun,

I just read your long but so worthwhile story about your journey with your husband through such difficult times.

I have to agree with eKIM  Marstin and our moderator Colleen.  You have a gift for writing.  No worries about saying it or writing it correctly. It poured out of you.  Your story will be such inspiration for others.  It also paints a picture of what it means to have strength of character, holding on to faith for your partner.  What a treasured time you shared together.  What a wonderful job you did protecting, loving and supporting your husband.  Your story is indeed worth sharing with many.

Thank you for taking the time to tell us your particular experience.  It gives us all hope for precious time, and how you and your husband were devoted to each other, kept each other going, nurtured each other.  Would that we all had that recipe when handed bad news.  It is so much better when you arent battling alone, struggling to understand, feeling overwhelmed.

It sounds to me that it was a two way street, you gave to Mike, and he gave right back to you.  

I will be thinking of your words for some time.  I encourage you to keep writing, to keep doing what you are doing....and I am sure that you will touch many more lives as you continue to be the gracious and loving person that you are.  It is very clear in your story..just how much you loved and were loved.

On top of losing your husband you had so many other losses to deal with.  Life certainly doesnt consider what we are dealing with when it hands out lessons.  So many things can happen at the same time.  I applaud you for your ability to caregive, to survive and to be able to share it all.

Thank you again for sharing your story. I for one am grateful to have read it and heard it.
Best wishes from me to you, 
Sincerely,
NatR 
Report this post      
 
Reply by Acajun
29 Jan 2013, 2:47 AM
Thank you NatR for your kind words and the encouragement to continue writing about our incredible journey. 
It was Mike's True Grit, sense of humor and his love of people that continues to live on in his story and all of us that were blessed to have him in our lives.
It warms my heart to know that his story will continue to touch people in their journey with whatever trials they are experiencing. 

I am sure that he is smiling knowing that his story lives on, he lived to help others.


Sincerely: Mary Ella  
Report this post      
 
Reply by KathCull_admin
02 Sep 2014, 12:42 AM
Hello everyone,

Today a new member my rock posted to lost from a broken heart. His wife died in August this year.

If you are able, would you consider responding to his post?

Thanks for thinking about it.
Katherine 
Report this post