Tuesday, April 13, 2010

Sad, and Mad

I'm so sad. A girl we met, on our first chemo admission, is at the end of the line. Her tumor won't quit. The writing is on the wall.

This has been a long and painful journey for her family.

And I'm so very mad. Her blog is full of messages to her mother. Her poor mother, who has just been told that her daughter is going to die of this tumor, is getting message after message from people telling her to "keep believing." Keep praying. Keep trying. Don't give up.

I could scream.

As if this woman doesn't have enough on her plate. As if she hasn't hoped, prayed, and believed enough in the last 3 years, through 3 resections, chemo, radiation, chemo again....

Over and over and over again, people say this garbage, all the time. "Prayer really works". "Faith saved my mother's life", not the stent placed to open up her blocked coronary artery. "Jesus can heal any cancer." Without ever thinking, wondering, if the person that is sitting through such nonsense ever lost a parent, a spouse, a child. Ever loved someone, prayed they would make it through that surgery, that MI, that car accident.

The insensitivity amazes me. Spend some time on the pediatric oncology ward, and then run around spouting that crap.

Keep your goddamn magical thinking to yourself. This woman's child is dying. She's about to make the hardest decisions of her life, and she's going to lose the prize no matter what. She needs support.


Jobbing Doctor said...

As an atheist who lost a child 20 years ago, I would completely agree with you.

This type of approach I find extremely hard to cope with (but it only happened once to me, then).

Even good friends who are christian did not resort to this line of thinking.

SOCKS said...

I went to bed last night talking about this same child and family. They have gone through so much and I wonder how a child that age deals with her own impending death. I feel badly for the grief they are going to continue to endure after her death, and the roller coaster of emotions and exertion of their own energy that they've lived, in HOPE. And now DESPAIR.

So sorry.

radioactive girl said...

People say really dumb things when they don't know what else to say. I know people said dumb things to me when I had cancer and it really ticked me off.

People told me that the source of my fevers that led to the diagnosis of cancer was that I drank diet coke. Or because I don't get enough sleep. Or maybe I should try acupuncture. I can't even count the number of times someone told me that "after my sister's brother's wife had a baby her thyroid went 'off' so maybe that is all that is wrong with you". This was immediately after I told them the biopsy results which clearly showed cancer.

My point is that people are dumb sometimes and I think a lot of the insensitivity stems from lack of power to do anything helpful. In other words, they mean well I think, but they aren't sure how to phrase anything helpful.

What I would most like to have heard (and did from some good friends) is "this sucks". Because it did and there was nothing else to say.

I do believe in prayer, but telling me things happen for a reason is just plain mean. It almost sometimes sounds as if people want to blame me for my cancer and put the burden of responsibility on me for the cure. If only I pray enough I will get better. If I don't get better, clearly I am not doing enough or praying enough or whatever. The truth of it is that it is just out of our control and I don't think anyone wants to believe that.

Tripsmom said...

As a Christian I believe that God gives us the intelligence to use our brains to become doctors, lawyers etc. I believe God works through us - in different ways but I believe he does, therefore if we cannot "fix" things like brain tumors, then it is ment to be. If there is a cure, God will guide us to it, in his time. Telling someone to hope and pray for a cure when your doctor tells you its "time" is cruel. If there was a cure I'm sure you're doctor would know of it. Giving people who are suffering false hope as I said before is cruel. Sometimes I think the best way to be Christian is to accept what is happening around and to maybe pray for the persons pain to be bearable and to accept that Gods plan (although not always understandable) is his plan and not ours to change.

Anonymous said...

Thank you for this. I am a parent who has been there. When people say these things, it has a tendency to make you doubt yourself when you have faced the reality. Again, thank you. I needed to hear this today.

Anonymous said...

As a catholic who lost a child to a brain tumour 4 years ago, I agree with you too. I didn't get too many of those comments myself, what I had was lots of people telling me great alternative therapies that we should try, which also became infuriating.


Cathy said...

I certainly have not went through what you have Dr. Smak. But I have lost loved one's (both of my parents). I was mortified by these type comments. It happened when I was watching both of them die. It is much better to say nothing at all than to say these type hurtful things. In my parents case they were just getting old and their bodies were worn out. It was their time and yet people still thought if I had Prayed hard enough it would not happen.

The worse for me though was when one of my children was very small and began having seizures. We didn't know why he was having them. A neighbor came over to inform me that seizures in a child was the work of the devil and I better get myself to church and Pray so that God would make them stop. I personally thought she might have been the work of the devil. I never spoke to her again.

I am very sad for what this woman and her family you are speaking of are going through. I am also very sorry she has to read those type comments.

A Doc 2 Be said...

I'm a theist and I do believe in God... but I never, ever ask God to cure this or that, only to give me the strength to get through...

When my son died, 24 years ago at the age of 6 months in an era that decried single mothers of any race as harlots or worse, I prayed that God would give me peace, sanctuary, and hope for a life after his death.

It was a faith in a better life, after the horror of a son's death, that saved my own life which had sunk into deep despair.

It is that same faith I have now, through the horrific two years I've just emerged from, that sustains me now.

Snickollet said...

I could not agree more. Thank you for saying this.

tropicalg77 said...

spoken as it should be.

anything else, is just so much less.

OHN said...

I have often thought that you could turn to the offender and ask if your child dies anyway, is it your fault for not praying hard enough?
Do these people really not know that obviously you have done everything within your power to keep that loved one with you?

It is true.....you can't cure stupid.

Anonymous said...

I have been silently reading your blog for the past year. I admire your courage as you have boldly written about your grief these past months. I lost my 38 year old husband to cancer five years ago. My children were then 9 and 13. I am a Christian, and so obviously our views on prayer and God will differ, but in my case, the hope I received through prayer and words on encouragement carried me during my darkest days. Sometimes the hope was that my husband would be healed, but I also knew that if he wasn't then God would see me through one step at a time. And He has.


Suzanne said...

This topic is sure to get my blood boiling every time. I have three children, two of which were diagnosed with life limiting chronic illness within months of each other.

We have heard it all. The one comment sure to make my head spin around is "God won't give you more than you can handle" WHAT?

I ask you, well intentioned but seriously ignorant person, would pumps, tubes, TPN, J-tubes, central lines, 32 different meds, home health nurses, home-bound teachers, a planner full of doctor appointments, a constant financial crisis, a dining room turned into a sterile dressing and medical supply room, infections, hospitalizations, a marriage on the edge and almost total social isolation, BE MORE THAN YOU COULD HANDLE? Because it sure is hell more than I can handle. Do you seriously believe your GOD would torture two children just to test my strength?

Most of the time I smile and nod, but every once in awhile I spew.

I helped write a pamphlet that is distributed to visitors at our children's hospital. "What to do when you don't know what to do" One side is visiting etiquette-call before you come, step out of the room when physicians and nurses come in, etc... The other side is tips to support the family- Provide meals, drive the car pool, walk the dog, mow the lawn, etc...

We have recieved overwhelming positive response and are working on a "What to say" pamphlet.

Bad things happen sometimes, I accept that. It took a long time (years)of anger, to get there. Bad things happen.

When someone offers to pray for my daughters, I thank them, but I also tell them that contacting their congressman and expressing their support of stem cell research and added funding to the NIH, and ending pre-existing insurance clauses would be really helpful too.

I am sad to hear of the young girl and her family, the horror they have been through and yet to come. I wish it wasn't so.

Kathy said...

The people who write those comments just don't "get it", not one little bit.

It has nothing at all to do with one's religious beliefs, either.

Believing is good, as long as it's not an unrealistic belief that there will be a miraculous unprecendented 11th hour healing.

Death is a natural process, part of the natural cycle of life, and for Christians this is the way that God intended it. For Christians there is a double bonus, in addition to being free of pain and this monster disease that attacks our kids at the very center of who they are, they get to go live with God.

What true believer would encourage another parent to believe their child could somehow avoid this freedom from disease and suffering?

But no matter your belief, there comes a time in the life of each and every one of us when we meet our maker or when we pass into non-existence, it is the cycle of life.

And in the midst of the sorts of unspeakable battles some of our children are forced to face, sometimes the enemy is going to prevail no matter what.

And in most situations, the kids know what's going down, they come to terms with their situation long before their parents do.

Deciding to lay down one's sword and accept what is to come is faith of the highest order. And for a Christian, accepting the child's impending journey to Heaven seems to be the highest expression of faith and belief.

If you were feeling up to it and if you haven't seen it, the PBS movie A Lion in the House shows some of the impossible family dynamics that arise from having a seriously ill child and what can happen when they pass away.

One girl spent her last day on earth at the hospital attempting a last-ditch chemotherapy on her father's wishes, an impossibly sad situation, the girl ready to die and the father not ready to let her go.

My son's neuro-oncologist once said to me that if they can't stop the disease, in the end it comes down to the choice between a frantic death or a peaceful death.

I hate the 11th-hour healing philosophy because it is this belief that usually leads to a frantic death.

My supportive thoughts are with the little girl's family, and prayers for a peaceful death.

Kathy said...

I know I've written a book in your comments, but one last thing-- we are very close with the family of a little girl with brain cancer who appeared as an extra in the movie that came out last July, My Sister's Keeper.

Although I didn't think a great deal of that movie, one of the things I did like was the family in the hospital room at the end of the movie giving encouraging statements about how everything was going to be great and offering up alternative therapies.

The mother and the girl were at peace and couldn't wait for the family (and the endless platitudes) to end. It's a great scene.

Love to you from a stranger on the west coast.

theagnosticswife said...

As someone who has has just recently become an atheist I totally agree! I live in the bible belt and this shit is said all the time around here.

It implies if they don't get what they prayed for that God choose not to answer their prayers while he answered someone elses.

As an ex-christian I've been in that boat and it sucks. I think people need to stop assuming that everyone believes in god and give credit to the doctors when credit is due.

Thank you doctors for the time and effort you put into your patients and I'm sorry that after you save someone's life they praise god for a miracle.