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My mom died in April

helpmefindhope
Posts: 10
Joined: Jul 2007

I am having a very difficult time and I am haunted by questions I have. I was hoping someone out there, and it sounds like there are many of you, who can answer some of the questions that haunt me.
My mom's diagnosis took weeks. Her chest x-rays were clear, she had smoked 30 years ago and was a first responder at 9/11 as a crisis therapist and rode her bike everywhere, but this past summer she got bronchitis, and I insisted with her doctor that she have a chest CT, because the bronchitis wouldn't go away. Ironically by the time the insurance company ok'd the CT her bronchitis had cleared up. She was 67 and had NO symptoms. It took a long time to get diagnosed, her bronchoscopy showed clear, but a spot on her left lung and a bigger one on her right lung showed up on the CT scan. The surgeon said we could start with chemo try and shrink the right lung tumor first, or just shoot for surgery if she qualified, then go in for a lobectomy. They also did a PET scan. It hadn't spread anywhere not even outside the chest. He also discussed biopsying her lymph nodes. Finally we agreed to his suggestion of going in to biopsy the right lymph nodes and if they showed negative he would proceed with the lobectomy. They were negative he did the lobectomy. That was now November. Then a month later he went in and did a wedge resecction on her left lobe. They were two different cancers. The right one was "slow growing" small cell adnocarcinoma, the left side was bronchiovalar (?) cancer. Only by January did he go in and do a mediostanapothy ( I know I am not spelling this right, but it's where they biopsy both sides of the lungs). There they found positive nodes on both sides. Still we had no chemo. This last procedure knocked my mother out, moreso than the surgeries. About 3 weeks later she had Cryoplatin which she had horrible reactions to and we raced her to the emergency room. At that time they saw that the now active lympth nodes were pressing in her chest creating an emphysema like situation and she was starting to have trouble breathing. They gave her medications, she left the hospital, we had another PET scan which now showed the active nodes, but my mom had gotten so frightened of the almost deadly reaction she had on the chemo, she didn't want to do chemo. Finally after almost 3 weeks we got a second opinion and that doctor,she, talked my mom into Taxol/Cisplatin. She went back into the hospital because by now she had pleural effusion, then they gave her the chemo, she seemed much better for exactly one day, then she got pneumonia, her entire immune system shut down and she declined over a month and passed away April 22nd.

I'd appreciate any thoughts on my situation. Obviously people live with lung cancer. It's so frustrating because I thought that would be us. We have a friend who is doing fine on chemo and was diagnosed the same time as my mom.

Thanks for letting me tell my story.

I see so much hope on this board and wish my mom had known about it.
I am haunted by would have's could have's should have's. I regret the surgery, I wish we had started the chemo (the right chemo for her) immediately. I regret that they didn't do the biopsy of BOTH sides of her chest because she probably was not a canidate for surgery to begin with, they probably were already positive. All in all we were in 3 different hospitals and they all said scary but different things.
The list is endless of what I wish we had done differently. I feel so, so sad and full of grief, because when she was first diagnosed we were told it was so hopeful and she was in such early stages. Every CT scan as we progressed looked like a bomb had gone off in her chest. Even as layman looking at her CT's were terrifying and none of the doctor's could explain it.
They just kept asking us what we wanted to do and my incredibly healthy mom was getting weaker and more discouraged, and I kept making descions that I didn't feel qualified to make. I kept saying that I wasn't a doctor. And my mom just kept agreeing with whatever I said because she was too sick.

Any comments would be appreciated. I am having trouble finding any peace.

BillDrake
Posts: 17
Joined: Jan 2006

I am relatively sure there is nothing I can say that will help much. Although I had a positive outcome, I also had an overlooked lung cancer and debates with several doctors on what to do. For whatever reasons I survived a bout with colon cancer/surgery and the removal of my left lung in the summer of 2004. I had enough radiation treatments to light up the entire east coast and consumed enough Chemo-juice to float a battle ship. Logic and the odds said I would not make it, but for now I have! I lay awake at night wondering why me and not the dozens of fine people I met during treatment that, like your mother, did not! I have no answer and I suspect you will never have one. People have asked me how I was able to handle this or that treatment/process. My response was and still is....What choice did I have? You find doctors you trust and you do what they say. What happens; happens! Again, I am sorry I have no better words for you!

Plymouthean's picture
Plymouthean
Posts: 264
Joined: Jan 2004

I am so very sorry to hear that you have lost your mother. I hope that you can learn to cherish all the years that she lived, with all the good memories, and not dwell on the fact that she is gone.
At some time in our lives, we all get a case of the "coulda, shoulda, woulda's" about a situation over which we have/had little or no control. You must not fall into that trap! Rather, you should try to rest easy, knowing that you, as caregiver and supporter for your Mother, did your very best, based on what you knew and believed at the time. "Our best" is all we can do. Whether you believe in "the scheme of things" or in "God's will", perhaps her survival was not meant to be. As BillDrake says, - you may never have an answer, - but you must believe that you did all that you could, and that you did the right things, based on what you understood and believed at the time. You said it yourself, - you are not a doctor.
I survived lung cancer, stage 3a, at age 67, when children all around me were dying of cancer. What did they do to deserve that, - and why did I survive when they did not?? Obviously, there are no answers there, either, so it is fruitless to search for answers. I have learned to accept what has happened, appreciate life, and try to help others.
My prayers go out to you, that you may find peace.

gcolburn
Posts: 9
Joined: Feb 2007

I wish I had answers that would bring you solstace in this time of distress and grief. Unfortunately I do not. My Father died this past March of lung cancer. In July of 06 we celebrated my parents 50 wedding anniversary what a wonderful time, In September 06 my Dad was diagnosed with Cancer in Left Lung with a large growth. The doctors seemed to do nothing pussy footing around trying to determine what to do if anything. Unfortunately I lived across the country on the west coast and my parents in New England. Finally in December they determined it had Metasticized to his ribs. In January my wife, daughter and I traveled home to see my Dad. Believing that we would not have alot more time to do so but expecting 6 months or more. March 11 Dad had a birthday and we believed and hoped for more time with him. March 18 my sister went home to visit and I called Dad couldn't talk through his tears, He was not feeling well and I decided I needed to go home as soon as possible. I made arrangement to fly in the beginning of April for what I expected would be the last time of being with my Dad. That was not to be he passed the early morning of March 25. It all happened to fast, his time to short. As I have grieved over these last months I have asked the same questinons you have or at least similar. What could I have done? What if I had been back home to help with his care? Why was my Dad taken from me? Should I have demanded better doctors to care for my Dad? I relied on relatives who were there to make decisions and I had to believe that they loved him as much as I and did the very best for him they could and I know they did. We believe in an eternity that surpasses all we see in this life and what I have come to believe is that none know the number of our days in this life, nor which will be the final day here on this ball, we can only do our best to love, live and enjoy the time we have. It sounds like your Mom loved, lived and enjoyed her life and she obviously loved you as you did her. It is clear by just the little you shared she was an amazing person who made a real difference. In the end her legacy and memory will bring you comfort and will dull the pain in time. Mine like yours is to new to be dull. But just now my 32 month old daughter who loved her Papa came up to me and said "Daddy, Papa is okay! He is with Jesus and he is okay!" I asked her if she missed him and she said yes but I talk to him Daddy and he smiled at me tonight." Out of the mouths of babes. Your Mom is alright and she smiles at you tonight. Be at peace and rest knowing you did all you could and she knew that for sure.
I may have the chance to live this out as a cancer patient. My doctors are putting me through the paces over lesions on my left lung. I am scared and unsure of the future but I will love, live and enjoy each day until the last.
Take Care

quinncornwall
Posts: 1
Joined: May 2008

My companion was diganosed with lung cancer and brain cancer after having sesiures feb. 15th.After 4 stays in the hospital and 16 radiation treatmens to her brain,she started chemo for her lung.The chemo almost destroyed her and back to the hospital with another sesiure.This time she had a massive infection and phenmonia.She was given 2 months or maybe a little more to live.No more chemo for her and she refused meds.We brought her home with me to die..hospice is helping us.No meds except for morphine patches for pain and she refuses to eat and drinks very little.Most of the time she sleeps.I think it may be days instead of months for her.While I believe in GOD and heaven very much,,It hurts me to see her this way and I don't know what I'll do after she's gone.We have been together for 15 years..She just celebrated her 65th birthday and was very happy.What do I do ?

helpmefindhope
Posts: 10
Joined: Jul 2007

Thank you to all those who replied. Your wisdom and poignancy is amazing. I blindly write these cries of pain and it amazes me the depth and understanding each of you have. I have no idea how I will feel tomorrow but I thank you tonight for taking the time. i also feel your pain. Each of us are on a special journey. Right now my sadness overwhems me but your stories and insights are deeply touching.

maggiforte
Posts: 4
Joined: Jul 2007

my suggestion would be to find a bereavement support group, either locally or online...you need someone to listen and actually hear what you're saying...we all tend to second guess and use the retrospectoscope but in actuality, it was probably too late when your mom was diagnosed for treatment to do more than extend her life a few months...and maybe it was not the way she wanted to live...my mother was diagnosed in Feb, treated with radiation and died in June...she didn't want to live as an invalid...maybe your mom felt the same way, especially as she was so active.
I hope you find peace and comfort soon.
Maggi

CinciRick's picture
CinciRick
Posts: 23
Joined: Apr 2007

Hi HelpMeFindHope,

My wife is occassionally asking the same questions. I took cough and cold medicine for months and then I went to a Dr and was treated for pneumonia for a week. Then a 2nd Dr treated me for 10 days more. Finally a 3rd doctor put me in the hospital for tests. After days of tests we were told I had cancer, it was inoperable, and I would not benefit from radiation. My only option was to go through chemo to try to prolong my life.

I have come to the conclusion that if it had been detected months earlier, or if we had made different treatment choices the final outcome will be the same, only the lenght of my survival might be changed slightly. I hope that when I am gone, my wife can accept the fact that my death was caused by cancer, and not by the choices made by me, her, or our doctors.

I woud also like to repeat something I am sure you have already heard several times. Patients can have completely different reactions to the same treatment. Drugs that make many people sick, weak, and nauseated (Gemzar, Carboplatin, Taxol, Avastin) I thought were easy to tolerate. Drugs that were supposed to have very little side effects like (Tarceva and Alimta) caused me to have very bad reactions. So I can reassure you from my own experience that it is very difficult for oncologists to predict a patients reaction.

So I hope you can feel at peace some day knowing cancer is responsible for taking away our loved ones. Cancer is an evil deadly killer that is often not detected until it is to late to cure. Direct the blame to cancer, and not to choices made by you and you doctors trying to stop something that was unstoppable.

Cinci Rick

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