Finding Out The Truth

[jenn]

Hi,

I lost my dad to cancer June, 1999. It still seems like yesterday. I had a terrible time getting over it and really don't know if I have or not. For a while, my life seemed to be getting back on track, but just recently, I find myself consumed with thoughts about him.

Here's the problem. My brother and I had to make the decision to withdraw life support while he was in the hopsital. It seemed like an easy decision to me and to the rest of our family. My brother was not so sure. I ended up talking him into it, based on the assumption that the cancer had spread throughout his body. So we let him go.

We agreed to have an autopsy performed, to confirm our beliefs and to find out what the doctors were not able to figure out. There were a lot of unanswered questions that seem common in hospitals these days. That's a whole different subject.

Anyway, just our luck we end up with some wacko forensic pathologist who took four months to give us the report, but only after we insisted. Long story short, she did not address any of the questions we asked and provided a basically useless report that we could not understand. If we are reading it right, it does appear to show a lot less cancer than we thought he had and to what degree of damage, we just can't tell. She refused to discuss the report with us, because she was mad that we got pushy after four months of nothing, so we can't look to her for answers.

We showed the report to a cancer doctor who could not come up with a reasonable explanation either. The cause of death was "acquiescing metastatic cancer due to radiation and chemotherapy." I am not sure if that means my dad gave in to the cancer, the cancer was giving in to the radiation, or the radiation and chemotherapy caused his death. It's almost as if she worded it that way, just to cause confusion.

On top of all of this, his doctor listed the cause of death as pneumonia, which is true, since he caught it there in the hospital, but the pathologist could have done such a lousy job, that she overlooked this, which doesn't do us a whole lot of good, trusting the report at all!

It has now been four years and I am feeling like I still don't know exactly how my father died or

if our decision was right or wrong or what. I feel like I have been avoiding the real answer, by not sending the report to another autopsy service to review and explain to us. I know it can be done, but something is keeping me from taking this step. I just keep putting it off.

I don't know whether I should just leave things as they are, or get the answer I may not want to

hear. The rest of our family thinks my brother and I are dwelling on it too much and should just

accept the fact that our dad died of cancer. Well, we know this, but they don't understand the

pressure it puts on you, when you make the decision to end someone's life for them. I know our dad's life was precious to him and he would have chosen to continue on, if there were a chance to stay in this world a little longer. Even one day was like gold to him. He was taken so fast. One day he finds out he has cancer, the next day he has two months to live and the following week he is dead. He never even had the chance to accept it. It was awful seeing how scared he was and how much he wanted to live. And now I feel like I pulled the plug too soon, but I was sure as ever, that he was headed for so much pain. The cancer was (supposedly) everywhere, lungs, liver, bone marrow, spine, etc.

So I would love to hear some honest opinions. Do I sound like I am too obsessed with this?

Or am I avoiding the truth and need to face up to it? I don't get offended easily and really need the advice. I have not discussed this with anyone, except my brother who feels exactly the same as me, but without the added guilt of being the one who talked the other one into it.

Thanks for listening. It feels kind of good, just typing the whole thing out. There are some

other people who are asking for support and I am going to see if I can answer them. I never

realized so many others had difficulty losing their parents like I did and it is comforting to know

I'm not alone, but I would never wish this on anyone.

Jenn

[mermangel0416]

hi jenn~

i don't have any real answers for you...my father died june 9 of this year. metastatic colon cancer. we don't really know what "did" it either. by the time he was in hospice there was so mcuh wrong with him it could have been lungs, heart, kidneys, liver... any number of organs that were affected either directly by the cancer or indirectly through the treatments. we will never know. i know the fear that your father faced and the fight to live and how hard it is to witness. my question for you is this: what will the "answers" get you? you know your father would have died, regardless of what the exact medical reasoning is. you know that once a "body" goes beyond a certain point ther is no return to normalcy, they don't get better. if your father was on life support it was only prolonging the inevitable. you must stop torturing yourselves with this. would he have wanted to linger in a state of "not" living? this man to whom, each day was like gold? jenn, you FREED him...you cut the ties that BOUND him to the earth. you loved him enough to end his suffering, you were selfless enough to let him go.

my dad was diagnosed in may of last year...

and it was a heartbreakingly beautiful difficult hellish year...

he finally was taken to the ER after his third kidney stint replacement. he had had a nightmarish night and was really out of it, vitals were completely screwed up... i am still angry as hell at my dad's doctor b/c the night he was admitted to the hospital for the last time SHE KNEW he was dying and she didn't possess the decency or prefessionalism to tell him or my mother. and i stood there NOT KNOWING and exchanging pleasantries with her. "we'll get him into a room and see what happens." hours later still in ER...they weren't even going to admit him, they were going to let him die in that garishly lit room seperated from the rush and noise by a single curtain...(the family insisted he be put in a room after a nurse was kind enough to tell us what was really happening) those were his last hours of consciousness and coherence. the next morning miss oncologist says "i can't believe he made it through the night..." jenn, he lived ELEVEN more days like that. the WORST eleven days of my entire life. we moved him to hospice (the hospital was NOT administering his pain relief adequately) and if i could have spared him one hour, one minute of his suffering...i swear i would have done it.

i know your pain, the anquish and the images you can't shake. but having the details won't bring him back and they won't change anything. you and your brother made the best decision possible based on the information available at the time...that is all you can do in life. you know your father wouldn't want you to be agonizing over this, using your time, effort and energy by reliving such a difficult time. he wants you to enjoy life and take pleasure in it as he did. let his legacy live on in you.

take care of yourself. ~alice

[jenn]

Dear Alice,

Thank you so much for the thoughtful reply. I believe you are right about most all of it.

He really was on his way out and I seriously doubt he would have enjoyed going through

whatever time he had left, in the shape he was in.

It's interesting you should mention the pain medication. When I first found out my dad had

cancer in all his organs, the main thing that came to mind was how to make sure we didn't get a doctor who would hold back for whatever ridiculous reasons. I could never understand that.

Anyway, everything was a complete disaster from that point on, but the one thing I have to say they did well, was giving him plenty of morphine. He was in the hopsital for about a week and even though he was not himself and acted like he'd lost his mind, it was better than seeing him in pain. I really don't believe he would have remembered any of it, if he'd made it through.

I am so sorry you had to experience such difficulties with your dad in the hospital. It seems to happen a lot, doesn't it? I read somewhere that in 1998 I believe, 20,000 hospital deaths were due to hospital blunders and mix ups. I don't know why, but reading that kind of made me feel better about my dad, although I would never wish this type of experience on anyone.

Not looking forward to mom's departure either. Is your mom still alive?

Jenn

[mermangel0416]

hello again, jenn~

i didn't know whether you were implying your mother is ill? i certainly hope not!

yes, my mom is still alive (thankfully.) i am 34 and this is really my first experience with death. i have only had two others close to me die (an aunt and great aunt) but i didn't witness it first hand. i was so unprepared for the awkwardness and ugliness of it. i know that sounds terrible, but it's just such a difficult thing to watch. my dad was (ugh, i had that word...it's so past tense) an incredibly healthy, handsome man for 71 years and then everything changed. i'll spare you the details (you are already too familiar with them i am sure.)

the hospital~ the staff was okay, it just seemed we constantly had to be running to get a nurse to administer pain or anti~anxiety meds. (not moprphine, it wasn't even mentioned. btw, the cancer was in his spine and hip~bones by this time.) as soon as they would begin to wear off he would start that awful reaching and pulling and groaning. it was unbearable. another thing...no one told us these were the normal stages of death!!! can you believe that? we thought he was going through his own personal hell (ok, he was, but we didn't have any idea what to expect...knowing might have made us feel a bit less horrified and haunted!) finally i stormed into the care management office and arranged to have them contact hospice b/c we had had enough. he (and we) needed to be in a more home~like environment where he would be truly cared for and not poked and prodded every two hours.

hospice was about as good as it can be. funny though, my oldest and dearest friend's dad died in early august in the same room in the same bed by the window. (cancer.)

if you ever need to "talk" just drop me a line. it doesn't make me feel good to know you have had a similar experience, but it makes me feel good to know we can help each other through it. ~alice

[Guest angelannette42]

Dear Jenn. I lost my mother January 22 2003, it was the most painful experiance I've ever had. Everyones grief is different. The night she died I was holding her hand and watched her the whole time. I'm trying to deal with the sound and the imagies. My grief has taken a toll on me, I'm suffering from insomia and have been to the Emergency room four times in the last two weeks, they give me pain pills and pain shots and send me home. My Doctor tells me six month is kind of a long time to be so upset, he has given me Zoloft and sleeping pills, which don't make me sleep. I feel so lost and helpless. I know my mom is no longer suffering but I miss her so much. I don't know how old you are but I'm 42. I don't think either of our parents would want us to grieve endlessly. We have to find away to get through, one breath one day at a time. Talking about it helps. Cry when you need to cry and laugh when you feel like laughing. Above all don't listen to people who say you should be over your grief, a parent is the reason we are here, and when we loose one a part of us is gone. But think about it like this, look at yourself and you well see that person is still there in you they made you,they will always be there in a part of you. I hope you and I both find our way through this rough road, and in time feel free of the grief and have nothing but happy memories. A Friend Annette