Personal Stories and Remembrances

[Mellissa at SokoloveLaw]

As the Social Worker here at the Mesothelioma Resource Center I have heard and read many of your individual stories and memories.  This is a place to share your stories with others and remember your loved ones.  Often it is helpful to know you are not alone and others can benefit from your experiences.  Please feel free to share and support one another here.  Sharing can often give us the hope and support needed to cope with this devastating disease.  Those effected by mesothelioma and other asbestos related diseases (and their caregivers) remain in my thoughts daily. 

[jkern]

I write this in loving memory of my father who passed away in August of 2001.  He was strong and courageous, but ultimately lost his battle against this terrible disease.  Ironically he did not die from his cancer, but from an infection he developed after having surgery to treat it.  His children and grandchildren have kept his memory alive.  We found strength in each other and received a lot of support from our local congregation.  I pray for my dad daily.  My prayers go out to all of you who are suffering from Mesothelioma.   

[angelc123]

I lost my dad to this disease on July 4, 1992.  My dad went a very long time without an answer to what was wrong with him. They kept putting him on different antibiotics and getting no results. About 3 months before he died they had  decided to do a biopsy on his lung to get some answers. The doctors said that when they did the biopsy the air caused the cancer to spread quickly and he was given a matter of weeks to live after. My heart goes out to anyone and everyone who has been diagnosed with this and their families. I think there may more information available now than at the time we received the news. All we ever knew was that asbestos was bad.  Other than getting the cold hard facts that nothing could be done, we were given no information and no options and left to deal on our own. I hope that that has changed. It is a very scary diagnosis to receive.
In loving memory of my dad, Ronald Joseph  1941-1992

[PATSY]

I AM WRITING IN REMEBRANCE OF MY DAD, ALBERT LOSS, WHO DIED IN OCTOBER 2005.  I AM WRITING THIS FOR MY MOM SINCE SHE DOES NOT HAVE A COMPUTER.  MY DAD WAS AN OVERWEIGHT MAN ALL HIS LIFE AND FOR YEARS HAD TROUBLE BREATHING BUT WE ALL ATTRIBUTED IT TO BEING OVERWEIGHT.  IN JUNE/JULY 2005 HE STARTED WITH BREATHING PROBLEMS THAT WERE NO LONGER HELPED WITH AN INHALER.  UPON FURTHER TESTING BY HIS FAMILY DOCTOR HE WAS FOUND TO HAVE FLUID BUILDUP IN THE AREA OUTSIDE THE LUNGS AND INSIDE THE RIB CAGE.  THIS IS AN AREA THAT SHOULD NEVER HAVE ANY TYPE OF FLUID IN IT.  MY MOM AND I WERE SHOWN SOME OF THE XRAYS AND THE LUNG WAS ALMOST COLLAPSED FROM ALL OF THE FLUID BUILD UP.  IT WAS NO WONDER THE POOR MAN COULD NOT BREATHE.  THE POOR GUY HAD TO GO TO THE HOSPITAL ALMOST EVERY THREE DAYS TO HAVE THE FLUID DRAINED.  THEY SENT THE FLUID AWAY THREE TIMES AND EVERY TIME IT CAME BACK INCONCLUSIVE.  FINALLY HE HAD A BIOPSY DONE AND THAT SHOWED THAT IT WAS DEFINATELY MESOTHELIOMA.  HE ALSO HAD A TUBE PERMANENTLY INSERTED SO THAT MY MOM COULD DRAIN HIM AT HOME.  HE WAS OFFICIALLY DIAGNOSED THE BEGINNING OF AUGUST 2005 AND DIED ON OCT 20, 2005.  HIS LAST FEW WEEKS CONSISTED OF MOM DRAINING HIM DAILY.  WE THEN STARTED FINDING LUMPS -- SOME BIG AND SOME REAL BIG -- AND LATER FOUND OUT THAT THEY WERE CANCEROUS TUMORS.  THE MOST WERE FOUND AROUND HIS RIB CAGE AREA WHERE THE DRAIN HAD BEEN INSERTED SO MANY TIMES TO DRAIN HIM.  IN THE BEGINNING HE WOULD EAT AND TAKE HIS MEDS AND WAS ABLE TO BE UP AND MOVING AROUND.  BUT AFTER THE DIAGNOSIS, HE WAS MOVED TO A HOSPITAL BED AND HIS APPETITE DIMINISHED.  AFTER HE BECAME UNABLE TO SWALLOW, MEDS HAD TO BE CRUSHED AND OTHERS WERE GIVEN IN LIQUID FORM.  HE PUT UP SUCH A COURAGEOUS BATTLE BUT IN THE END WE HAD TO TELL HIM TO "JUST LET GO".  WE KNOW THAT HE IS IN A BETTER PLACE AND THAT HE IS WATCHING DOWN ON US BUT SOME DAYS I AM SO MAD THAT HE WAS TAKEN FROM US.  HE HAS LEFT BEHIND A WONDERFUL WIFE, TWO CHILDREN AND THREE GRANDCHILDREN THAT ALL MISS HIM SO MUCH.  I WOULD GIVE ALL THE MONEY I HAD, AND THEN SOME, JUST TO HAVE HIM BACK.   HE WAS SURROUNDED BY FRIENDS AND FAMILY WHEN HE DIED AND I ACTUALLY SAT AND HELD HIS HAND TELLING HIM WE LOVED HIM UNTIL HE TOOK HIS LAST BREATH AND HIS HEART STOPPED BEATING.  I WANTED HIM TO KNOW THAT I WAS THERE UNTIL THE END WITH HIM.  I DON'T REGRET THAT ONE BIT!!!  THIS WAS OUR FIRST EXPERIENCE WITH CANCER IN MY FAMILY AND I HOPE IT IS THE LAST.  IT IS A HORRIBLE DISEASE.  BUT I WOULD RECOMMEND HOSPICE TO ANYONE THAT IS GOING THROUGH THIS.  THEY WERE ABSOLUTELY WONDERFUL.  THEY ARE TRUELY ANGELS FROM GOD FOR ALL THE WORK THAT THEY DO.  WE ARE COMING UP ON THE SECOND YEAR ANNIVERSARY SINCE MY DAD'S DEATH AND I CAN'T BELIEVE THAT MUCH TIME HAS GONE BY.  MY HEART GOES OUT TO ANYONE GOING THROUGH THIS HORRIBLE DISEASE.  LET'S HOPE A CURE IS FOUND SOON.   

                 DORENE BAKER
 

[papajim586]

I lost my wonderful wife of 34 years to mesothelioma in March of 2000. She had just reached her 53rd birthday 3 days before she passed away. I share everyone's pain, sorrow ans suffering from this dread disease. I pray that no one would have to go through this ordeal alone. Trust in God and keep praying for those who are stricken with this disease.

[Mellissa at SokoloveLaw]

This is another personal story written in to MesoRC.  Debra you and your family will be in our thoughts.  Thank you for sharing this very personal story.

"I am witting this in remembrance of my Daddy who died Aug. 2007.
Daddy was always a very healthy man. His first major illness came late
in life,when he was diagnosed with prostate cancer.He went through the
treatment and was given a clean bill of health. On his last appointment
his Doctor told him " Mr. Brown you won't die of cancer". I'am  sure he meant
prostate cancer.Little did any of us know that seven years later he would
face another kind of cancer.
Daddy was to have a surgical procedure on his right arm in May 2007.During
his pre op ,they heard what they thought might be a problem. There was fluid in the lung.
after the fluid was drawn three times,they also did a biopsy.The mass was found
outside the lung in the chest wall.
I'll never forget, as long as I live,the look on his face when he was told the mass
was inoperable. He always thought he could beat anything.Not this!
Daddy lost his battle against this disease a little every day. Every day his
body grew weaker as his breathing became more labored.Daddy told us
he was not ready to leave his family.He also told us many times how much
he loved us.When we could no longer keep Daddy comfortable at home, we
placed him in the loving care of Hospice of the Piedmont.Seven days later
Aug. 2007 he went to be with his Lord and Savior.
To all that are suffering from this disease,and there caregivers,God be with
you.  -Debra"

[mysheiba]

My father was the best Dad a son could ever hope for.  He provided everything, taught many of lifes valuable lessons and was there for me all throughout my life.  He gave to everyone, especially to charities and his church.  Three years ago at the age of 78 he had quadruple bypass surgery and it gave him a new lease on life.  He had more strength, was younger looking than he had been in years!  He had pnuemonia (or at least they thought) and had the fluid removed from his right lung in August of 2007.  Three weeks later he had more fluid removed and biopsies done on both lungs.  Still nothing, again the fluid came back and made breathing very difficult.  He went back to his heart surgeon to see if he knew anything that could be done to give him relief.  As the biopsies came back negative, his surgeon scheduled him for decortication, attempting to remove what they thought was scar tissue around the lungs caused by the bypass surgery.  This was late September 2007.  When his surgeon opened him up he knew there was nothing he could do, confirming Mesothelioma.  I was with him when we went to see the surgeon, then on to see the Oncologist.  Both told him there was nothing they could do and that he should "get his affairs in order".  My Dad was one of the healthiest 80 year old men you have ever met, he radiated life.  The news devastated us although after much reading on Mesothelioma, we knew the outcome.  My Dad's only wish was to die at home and see his sons and daughters, spend as much time with them as possible.  He got his final wishes, my Dad died in my arms on Christmas Eve, 2007.  A special thank you goes out to Hospice of Northeast Ohio and to his wonderful nurse, Bev Bunch.  Without in home Hospice my family would have had a much harder time through this ordeal.  Bev and the staff are truly God's Angels.  In addition, my Dad would not have received his final wishes.  I will forever remember and love him, each and every day.  He remains in my prayers and I know that he is with God, this man is truly one of the best that ever walked this earth.  I will miss him dearly, each and every day.

My thoughts and prayers go out to everyone who has spent time with a loved one or friend who has suffered from this deadly disease.  May God be with you and strengthen you always.

Iain M. Rae, in loving memory of James M. Rae

[jenstock]

I just lost my Dad on Saturday, March 8, 2008 to Mesothelioma.  His battle began in October of 2007.  He had his first drainage on Oct. 26th and they took 2.7 liters out.  Less than two weeks later, they took another 2 liters.  In November, they put a drainage tube (as we called in) in and Mom had to drain him daily.  He had test after test (Chest X-Rays, Blood Test, PET Scan, etc) and everything came back inconclusive.  He was then diagnosed with Lung Cancer with an unknown origin. 

The end of January 2008, the Oncologist finally sent him to a Surgeon and he had a surgical biopsy which confirmed the Mesothelioma.  He had numerous nodule on the lining of his chest wall.  This of course meant, no surgery and no treatment (Chemo or Radiation).  Although Mom and I suspected this from the beginning (we did research online and his symptoms matched Mesothelioma and our gut just told us), we still couldn't believe it.  Dad was suppose to be around for many many more years (he was only 70 years old).

On February 22nd, he was admitted to the hospital with Pnemonia and Viral Menegitis.  He was discharged to home with Hospice care on March 3rd.  March 5th, he fell and was admitted to the Hospice Center.  He kept suffering with the shortness of breath and fatique.  We could see him slipping each and every day.  He tried to put up the front and deny it but we could tell by looking at him and speaking with him.  I spoke with him the night before he passed and I could tell in his voice he was tired of fighting.  Saturday morning he passed away with Mom by his side.  His funeral is Friday the 14th... my sisters birthday.

I sit here and still can't believe this has happend.  He was such a wonderful man... witty, smart, funny and caring.  He went so quickly that even though he was only given months to live, I don't think we ever fully prepared ourselves that the day would come.  That day did come and we still can't believe it. 

My thoughts and prayers go out to everyone who has been affected by this terrible disease.  I know Dad is looking down on us and helping us through this difficult time... he always looked out for others and I know he hasn't stopped!!

This is in memory of a GREAT Father and Papa!!

[saidarqueen]

Hi. Sorry to hear about the lost of your father. My Dad was diag in January. He has had 3 chemo treatments and all he does is sleep and complain about the pain. I know this is a really hard time for you, but can you tell me how bad it really gets. THey say my dad is only stage 1, But the pain seems unbearable already. He is having another PET scan next Saturday to see how much change since Jan. If you are able, I would really appreciate someone telling me what to really expect. The doctor has asked if we are ready for Hospice and my brother has turned that down. He seems to be in denial on how fast this really progresses. Any feedback would be very helpful. I understand every body is different and people handle treatment and pain differently. But what can we really expect in the near future. Right now all my Dad does is sleep.  He is only 69  and was very healthy prior to this.
Thanks for all your help.
my email address is saidarqueen@charter.net

[lost4ever]

I lost my husband from a asbestos related cancer. He was 33 years old. I will never forget that day. It was November 4th, 2005. He only had the cancer for 7 1/2 months. He never gave up on himself...even when everyone else did.
I never imagined I would be a widow at 33 years old. My heart aches for him. He was my best friend. The last 2 months of his life he was at home on full oxygen. He couldn't walk and could not breathe very good. But somehow he managed to give me a smile everyday. I took off from work and I became his caregiver. Whether it was bathing him or changing his IV pump or helping him get dressed. I did it all for him.  If I had to do it all over again I would do it in a heartbeat.
I re-live that morning over and over in my head. It haunts me. He was sitting up talking to me. (He couldn't lay down because his lungs would fill up with fluid and would suffocate him) The last thing he said to me was "I love you" In a blink of an eye his eyes rolled in the back of his head and he was gone. I cried and screamed for him not to go..not to leave me. I pleaded with God to not take him , that I needed him here with me. I was all alone while his body lay lifeless. My sons were in their bedroom sleeping. It took the coroner 2 1/2 hours to get to my house. I never let go of him that whole time, even as cold as he got.
He's the closest to heaven I have ever gotten......he will never be forgotten.
He told me everyday he wasn't going to die because he couldn't bear the thought of leaving me behind.
Everyone said it would get better and you know what? They are all WRONG.
Almost 3 years later. I sit alone and cry. I can't bring him back and there is nothing I can do. Learning to live again is killing me.
No one understands me here. On nice days I spend my time sitting at the cemetary talking to his headstone. He was too young and our life was just beginning. We had been friends all our lives..the best of friends but it was years later that he said to me "how about giving me a chance?" It was the best thing I ever did. This was the eulogy I wrote and my brother read it for me:

I know this isn't conventional for me to have someone say what I have written. . But there was never anything
conventional about Jeff. He had a spirit you just couldn't break, no matter how hard things seemed. He braved
every storm no matter how hard the winds got, and even in his last few days he would still tell you that God was
going to heal him. He never gave up on that or his faith. He had faith that could move mountains. The greater
the pain the more his faith grew. He suffered everyday and never complained no matter how much he struggled..
He fought to the very end. Not because he didn't want to die but because he was scared of what it would do to
the rest of us to lose him. That was Jeff.
He touched my life in so many ways. I never felt love the way he loved me .He loved me with all that he had
in him. He always made me smile whether I wanted to or not. He made me laugh at my frustrations. When
I lost faith in myself he believed in me. When I stumbled he was always right there. He had the heart of a
thousand men. He always saw the good in everyone no matter what anyone else thought. I know I am a better
person just for having him in my life.. A good friend put it in such a beautiful way to me. Jeff was like a ripple
when a stone hits the pond. It touches all of the bank sides. That was Jeff. He touched so many people
in so many ways just by being "Jeff". We talked about several things in the last few weeks of his life. I
think as he watches over all of us now he would say ...do not cry for me, keep my memory in your hearts
forever and I will always be with you. He told me once that if I felt a warm touch on my cheek that would be him.
That he would never really be gone and that he would be waiting for me when I come "home". That is what I
hold on to. To every thing there is a season, and a time to every purpose under the heaven. A time to be born,
and a time to die; which he reminded of me often. If anything he wanted people to take this to heart. He wanted
you to listen to these words.Hate each other less and love one another more because tomorrow may never come.
Love with all that you have, and fight for what you know is right.
Jeff lived by these words...Cancer is limited. It cannot cripple love, or corrode faith, or
eat away peace, or destroy confidence, or kill friendship, or shut out memories, or silence courage, or invade the
soul, or reduce eternal life, or lessen the power of the resurrection One thing I know, death cannot kill love, and
hands cannot bury it. I will love you forever.


I know one day I will see his face again and I will hug him like no one I have ever hugged.  For one day all the wrongs in this world will be made right again by our Father in Heaven. It's the waiting that kills me.

[watu77]

My mother recently lost her battle with mesothelioma this past June, 2009. Our nightmare began early spring 2007 when she noticed she was often short of breath for no apparent reason. The day before she went to the doctor, she was out shopping with my wife (then fiancée) and couldn't even make it to the second floor of the shopping centre because of her labored breathing. The following day at the doctor's office, he informed her she had a collapsed lung. She was sent to the hospital for further testing, a biopsy, drained the fluid and sent her on way with (in my opinion) a misdiagnosis of pneumonia.

A year went by (during which I got married), and things were good. Mom was still being treated for shortness of breath, thinking she was still battling a case of pneumonia. Then in April 2008, her lung collapsed again, she was sent back to the hospital for the same testing. This time the biopsy told a different story. When I called to find out how her testing went and what the results were, she was fighting back tears and her shaky voice informed me she had been diagnosed with a terminal cancer called stage 4, pleura mesothelioma. None of us had heard of such a thing. I remember hearing "lung" and "cancer" in the same sentence and drawing my own conclusions. Her lung cancer must have been caused by second hand smoke, caused by my father's smoking over the years, I thought to myself. But my mom clarified that mesothelioma is caused by exposure to asbestos. How the hell did my mother, a kindergarten teacher, ever come into contact with asbestos??!!! Turns out it was verbally confirmed that at one point, the ceiling tiles in one of her classrooms were in fact asbestos ceiling tiles, and whenever the classroom above hers would do any sort of activities, dust would fall from the ceiling into her classroom. Her chemo treatment would soon follow, but only after she would have her final trip. She had already booked a trip to Arizona/Nevada and wasn't going to let her diagnosis ruin it. After recently going to Las Vegas myself, I joked with her that she would fit right in because oxygen bars were all the rage in L.V.

When she returned, her first round of chemo began. It was a trial chemo, and was extremely hard on her. She had a PIC line installed to free her from all the needles. With the PIC line came a blood clot, so she had to learn how to inject herself with blood thinners. Then she developed an infection at the injection site, and right on top of that, pneumonia set in. She started blood transfusions when her hemoglobin was low, and took extra medication to boost her white blood count. Then in September 08, she was hospitalized because of her dangerously low blood counts and dehydration. She had another, more lengthy, hospitalization in October where she was in isolation battling infections and dangerously low blood counts. Typical of my mom, on one fall day while I was visiting, she was worrying about Christmas shopping (of all things). She went along with everything the doctors prescribed in hopes of at least a remission. In December, she called me one day, ever so pleased with herself, that she and dad had made tortieres (meat pie) from scratch. Over the winter, she cleaned out her kitchen cupboards, day-by-day doing a shelf, or a cupboard at a time. Such tenacity! And we were finally blessed to have her meet her granddaughter, born May 5. Things seemed to be stable until May 15 she was admitted again for treatment of pneumonia. And her most recent admission was on June 22 with breathing difficulties. We all hoped she would stabilize and get home again, but that was not to be. A teacher until the end, she showed example of how to live with cancer, and ultimately, how to die in peace.

Alas, mom is gone, after her courageous, dignified, and determined fight against mesothelioma; gone from our lives way too soon. But she left with the crown of a good name, adored by her family and cherished by her friends. She enriched my life, and oh how I shall miss her.

Arthur

[Mellissa at SokoloveLaw]

Arthur,
What an eloquent and thoughtful tribute to your mother.  I am deeply sorry for your lost from this devastating disease.  You are not alone in your experience and yet this doesn't make it any less difficult to bear.  You and your family will remain in my thoughts and prayers.  Thank you for sharing your mother's personal story.  Please let me know if I can help in anyway.

Best,
Mellissa Hayon