Too Many Cooks are Spoiling the Broth, Dashing My Hopes

5 04 2011

Photo by Amy Rauch Neilson

Do you remember the children’s book: Alexander and the Terrible, Horrible, No Good, Very Bad Day? Yesterday was that kind of day.

I’ve known too many of these in the last three months since my diagnosis. Terrible days are to be expected — it is part of the nature of what’s going on. Notice I said part. But several of these terrible days could have — and should have — been avoided. I hope any unnecessary future ones will be. I’m trying to figure out how to make that happen.

It boils down to this: I am in awe of the world of medicine while simultaneously, I’m horrified by it.

I’m in awe because, as I’ve mentioned before, the three chemotherapy drugs that I’m on right now that are likely saving my life — Carboplatin, Gemzar and the PARP Inhibitor, did not exist in 2006, when I was first diagnosed with Breast Cancer. Kudos to my oncologist, Dr. Dana Zakalik, for her role in bringing the PARP to Royal Oak Beaumont Hospital as this drug seems to be showing great promise. I’ve also noted in this blog how much I appreciate the people who got me through the testing phase with lightning speed so that my type of cancer (Stage 4, Triple Negative), could be identified as quickly as possible and I could begin treatment. I was diagnosed on Jan. 12 and by Feb. 1, my chemo regimen had begun.

I’m horrified because I can’t get over what I’m calling the “loose lips” practices of medical personnel on the same team who seem not to coordinate their findings, methods, treatments, or prognoses of their patients — one of those patients, of course, being me.

You know the story of what happened during my lung biopsy, as I blogged March 29, titled, “A Little More Bedside Manner, Please.” Then there was the completely unexpected delivery of my PET Scan results — I found out I was in Stage 4 breast cancer when I thought I was coming in for a simple surgical consult. I would have liked my husband to have been by my side when I learned that news. But poor communication between the medical staff and me, the patient, gave this part of my story a totally different, harrowing, and unacceptable ending — including me, hysterical, caught in a traffic jam trying to reach my husband, who was home, waiting for me, waiting to hear the specifics of the news that put me into hysterics in the first place.

Then there’s yesterday, which started off as the final “off” day for me before Round 4 Chemotherapy begins today. I was really happy, humming along, doing some laundry and dishes, working on some editing projects when the phone rang. Health care insurance red tape required that I drop everything I was doing and rush to the hospital for an appointment with an oncologist who is not my oncologist, as mine is out of town. Miss that appointment and today’s chemotherapy appointment was in jeopardy.

That’s when it happened. Again.

I am baffled as to how it is possible that three different doctors from the same oncology office holding my same medical file could come up with so many variances in how I’m going to be treated, what I can expect in terms of prognosis, what our goals are, where we’re going with this.

Imagine it this way. You’re a Major League Baseball player who just slugged one out into center field. As you approach first base, three different managers — all from your team — are screaming three different opinions as to where you’re headed. Stay? Run to second? Run to third? You’re so confused that you don’t know what to do, you freeze, you end up being tagged out.

I felt that way yesterday — and have felt that way plenty of times in the past weeks. Here are just a few examples of the contradictory information I’m getting that I think would push even the psychologically strongest among us over the edge:

“We’re going to keep going until we get a clear scan and you’re in remission, then we will carefully watch you and at the first sign of a recurrence, treat you again.” vs.

“We don’t expect your scans to ever be clear. We’re going for stable here. We’re just glad nothing has grown, progressed. You’ll always have these tumors in your lungs. We don’t expect them to disappear. If they do, that’s a bonus. You’ll just keep on having chemo.”

And:

“Once the chemo clears the cancer in your lungs and lymph nodes, we’ll remove your left breast implant, take out whatever remains of the lump in your breast, radiate that area, put the implant back in,” vs.:

“We might just leave that breast lump there. In fact, there is a clinical trial where half the women are having the lump removed and the other half aren’t. We’re studying how this affects long-term survival rates. That clinical trial might be open to you.”

And:
“Yes, the four largest tumors in your lungs appear to have shrunk by a few millimeters each.” vs.:

“Well, the CT Scans aren’t that accurate. They can be off by a few millimeters. Hard to tell if there has been any progress. At least you’re stable.”

And:

We only see “uptakes” on your PET Scan indicating cancer in your lungs, lymph nodes of your breast, left breast, and possibly a spot on your clavicle. Nothing else.” vs.:

“We see three small spots in your liver, but they appear to be benign, perhaps hemangiomas, and likely nothing to worry about.” Then, yet another doctor, after viewing the same CT Scan results:

“No, the radiologist clearly indicates that those spots on your liver are likely cancerous. We have no way of knowing for sure without a biopsy, but we don’t plan to biopsy. We’ll just keep on with your current treatment.”

Then, as I’m sobbing uncontrollably in the Exam Room yesterday, the doctor turns to me and says, “You seem depressed. Do you need a prescription for an anti-depressant?”

“No,” I manage through the sobs. “I’m already on one.”

“Perhaps you need to see a counselor?”

“Nope. I have one of those, too.”

And then it occurs to me that my reaction to all of this conflicting, contradictory, horrifying information regarding the life-threatening condition I’m battling isn’t depression.

It’s called NORMAL.

Copyright 2011, Amy Rauch Neilson

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41 responses

5 04 2011
Sarah Maurer

**Hugs** OMG, what is up with our medical system?

This makes me even more angry considering I just wrapped up a story on the trend toward interprofessional medical practice. Since around 2000, the IOM has been calling for a shift to team based practice, better communication among providers, and a shift to working with the patient as an important partner in care.

Stories like yours make me realize what a long way we still have to go =(.

5 04 2011
Amy Rauch Neilson

Sarah,
Would you please send me a link to the story when it’s published? I’d really like to see it:

amy@itsinthegenes.org

5 04 2011
Meau

Aw, Amy, I just want to slap ’em all. I’m so sorry. Hard to stay positive when even THEY don’t seem to know what the heck is going on. You just keep doing what you’re doing. You’ll be all right. But it definitely does piss one off, doesn’t it.

5 04 2011
Jennifer Wolf

Wow. I have nothing nice to say, so I’m not saying anything at all. Except that I love you, and am sending up extra prayers for you today.

5 04 2011
Nancy

No one should have to go thru what you are dealing with. It’s bad enough having to deal with cancer let alone doctors that are not consulting with each other and giving you a unified, honest and compassionate support system. You are in my prayers.

5 04 2011
Roni Kinsella

Wow, truth is someone can be brilliant and at the same time completely stupid!! Amy hang in there !!!

5 04 2011
Kristi Rugh Kahl

No one better than you Amy to be your own advocate! Get all those doctors with all those different opinions in one room at the same time and let them have it. Then have them all look at your scans and give you the truth. You deserve that much! Sorry you have to deal with this on top of everything else. Hang in there. We’re all still behind you supporting you and seeing you through this! xo

5 04 2011
Kimberly Brown

Amy, there has got to be a way to insist on a meeting with all 3 oncs….and tell them you want the complete story….and all options….why each sees your scans differently, why each sees your prognosis differently. My heart goes out to you my dear…..all of this confusion is not normal…..it is irresponsible on the part of your treatment team to provide such conflicting information. I know you have it in you to throw a fit and demand some clarity…..go for it warrior woman!
With a heart of hope for you,
Kim B

5 04 2011
DeAnn Krutsinger

Amy,
The only way that the system can improve is if people exactly like you work to change it. I think you should print off what you have written in today’s blog and take it directly to the doctors that have caused the situation. Their goal is to treat their patients to the best of their ability. That means being able to treat not just the physical but the emotional as well. Most people are too intimidated to take a stand with medical professionals. Not you. You go girl!

5 04 2011
Sharon L-S

As doctors are notoriously the worst patients you would think that the med schools would emphasize bedside manner, or that famous idiom, “Do onto others as you would have them do onto you.”

That said, sending you hugs, prayers and positive thoughts. 🙂
Spring is definitely on its way and the flowers will sparkle for you.

5 04 2011
Doreen

This is exactly why I do NOT go to that office anymore. Way too many discrepancies for me. Remember, you are the CEO and they all WORK for you because you are PAYING their salaries!!! They do not show up out of the kindness of their hearts; they show up to be paid to do what they do.
So sorry you also have to go through all of this. Hang in there and take charge. You can do it!

5 04 2011
Lisa M

Aim, I just got very overwhelmed reading through all your diagnoses here on your blog. Misty even, which as you may know, is unlike me. As devastating as it is reading about a loved one, I can only imagine how terrifying it is to hear it in reference to self. The total lack of certainty and control is bewildering.

All I can say is, you continue to wrench hope and good out of this for the benefit of your loved ones and strangers alike though your writing. I only hope that you are as comforted by that fact as we are moved reading your story.

So much friggin’ love!

5 04 2011
Amy Rauch Neilson

Of course I am, Lisa! I love you and miss you much!

5 04 2011
Monica Lesnau

No worries, Amy; your reaction is absolutely NORMAL! Those feelings are like a check engine light telling you that something is very wrong. Don’t ignore them, but don’t focus on the light. It makes no sense to run around yelling, “The light is on. The light is on!” Be aware, but don’t get attached to the feelings. If you correct the problem, the light turns off. Take action. Kristi is right. Time to get people together and do what you do best. I’m talking to the woman that did indeed get her results – before her scheduled appointment! Go get ’em and TEACH THEM! Amy. Small name. Big Impact!

5 04 2011
Lori Parker

Aim – Monica said it best! Accurately dead on! Great analogy. Love you, Cuz

5 04 2011
Anita

So sorry Amy. If they can’t get the art of communication right, they should at least be straight on the science. Keep in mind the good reasons you had for choosing your regular oncologist. I hope she can remain a guiding light for you in this mess.
Love,
Anita

5 04 2011
Debbie Loumakis

xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo!!

5 04 2011
Marsha McAuley

Geeze! You are going through enough without having to deal with all this on top. Just keep doing what you are doing and STAY positive. You CAN do this!!!

5 04 2011
Carol

You are handling this quite normally, and doing so with great strength being able to share it with the world! NOT having strong emotions would abnormal.

Let this phase of shock & fear over more evidence of medical confusion get past, & then the anger phase can carry you though what it will take to get your medical team on the same page. ;^) Prayerfully, Carol.

5 04 2011
Carol Clemens

Amy–

I think one of the hardest things for anyone to accept is that medicine is still as much art as science. You could have 20 oncologists in a room and get as many different opinions. The truth is that we just plan don’t know all the ins and outs pertaining to cancer, and even if we did, it appears to act differently in different people, which means that each patient is unique. Shades of grey are difficult to wade through when it is your life being discussed, but we do know that those patients who remain focussed on a favorable outcome and have the power of prayer working for them often overcome great odds. That’s you, luv, because we are standing with you! You will feel better if you share your frustration about the differing opinions with your team, but only if you realize that their diversity of opiniions is normal. There is only One who knows your answers, and we are enlisting that Power and Knowledge to be with you in all this. Hang in there, Amy!

Carol

5 04 2011
Laura Kasischke

WhatEVER they tell you–anyone, anywhere, anything–you must keep in your head this FACT: There is NO kind of cancer, no matter how dire or advanced or rare or deadly, that SOMEONE hasn’t survived. They’ve all been survived by someone. Someone has gone into remission. Someone has lived a long and healthy life despite it. You will be that someone.

5 04 2011
Laura Kasischke

I wanted to add to this to say that they *haven’t* said you have a rare or deadly cancer. You have a kind of cancer that has a high cure rate, even at its most advanced.

And I’m sending you hugs and love. Just too worked up after your blog to dot all my i’s! xoxox

5 04 2011
Sherri

Outrage. I wish I could have turned to him and said, no, YOU need more information. She needs a medical team to manage her care, WITH CARE. I know science and medicine aren’t perfect, and we all do the best we can to get through our days – but damn. So much uneccessary suffering for the lack of a coherent patient centered process. I’m sorry Amy. I’m so glad you are who you are, and recognize that YOU are NORMAL!

5 04 2011
Sarah Zowada

Oh my goodness! This is SO hard!! You begin to wonder who you can trust. I agree with the others,…get them all together and see if they can agree, so that there will be one diagnosis and one treatment plan.

Your reaction was perfectly NORMAL! May God give you, your husband and your doctors HIS wisdom as you proceed with treatment!

5 04 2011
Molly MacDonald

Get out of there FAST and go to MD Anderson in Houston STAT. Or check with The Block Clinic in Illinois or Dr. Tony Jimenez, M.D. at Hope4Cancer Institute.

This kind of behavior on the part of your medical team clearly shows they are not on the same team.

I would be concerned, very concerned about the differing opinions. Call me and I will tell you what one patient’s family told me of this treating institution and they believe, their sister, daughter would be alive today if she had sought treatment at U of M or out of the state.

5 04 2011
kate

I TOTALLY understand! I think docs should be accompanied by a human person with communication skills who could interpret/soothe/reassure as needed. What makes me frantic as my son deals with autoimmune liver disease and waits for a transplant is the way docs casually toss out new things to worry about, with no cause whatsoever. One doc, trying to calm me, said, “Oh, don’t worry about cholangeal carcinoma. He’s much more likely to get colon cancer from the Crohn’s disease.” Gee, thanks. And of course I wouldn’t have been worried in the first place except THEY BROUGHT IT UP.
I think I need to start each appt with a warning that if they don’t want a hysterical puddle of mom on their floor, they’d better not mention any new things to worry about unless and until there’s cause.
I’m so very sorry your ordeal is being made even more difficult. Hang in…

5 04 2011
Carol Phillips

Amy what can one say about such a difficult situation.
All I can think is that God and God alone knows the outcome, and is the Go to Guy for healing, comfort and direction. Pray, Pray for discretion and wisdom that He will guide you in the right direction. That will be my daily prayer for you.

5 04 2011
Don Neilson

Carol C.,

If you have a team of many people, there should always be a leader. And that leader should set guidelines as to how information is presented to the patient.
There is more than likely a common opinion or theory throughout the team. It needs to be filtered and then there should be a plan of attack. Would you be more comfortable leaving your car with someone who has consulted with other experts about what is wrong, then came to you with a general consensus of the problem and how they plan to fix it? Or to be in a room of mechanics all blurting out their ideas of what is wrong? You would think the right hand didn’t know what the left one was doing.
If it is all opinion, then find the one that makes the most sense as a team and give the patient the most accurate info that you can. Bottom line is, we all know Amy is sick and it is serious. Amy needs one person telling her what is going on and that person needs to be armed with all of the information every time she speaks with Amy.

Don Neilson

6 04 2011
Jennifer Bopp Stegbauer

You hit the head on the nail Don! I think the problem why it doesn’t happen that way many times depends on the people on the team. Are they working such long hours that they have no time to consult each other? Do they like and respect each other or are there negative internal politics going on? That is a team-work destroyer.
I also am annoyed with people who think that anti-depressants and therapy stops people from showing real emotion to situations. Anti-depressants aren’t supposed to lame you, they are supposed to support you in dealing with real situations or help you avoid getting into a downward spiral that doesn’t end. I am sure the doctor who asked Amy if he should prescribe an anti-depressant meant well. But he should know that she is on one. Maybe saying that he realizes it can be terrifying to hear all of the different doctors opinions and is sorry that that is how it is at the time would be better than saying “you seem depressed.”

5 04 2011
Linda Stanislawski

praying for your calm and peace in this storm.

5 04 2011
Don Neilson

Carol C.

5 04 2011
Tracey

That is just ridiculous!! They need to get their stories straight. In my heart, and I am sure each and every other reader’s heart, you are doing great and moving in the right direction. Big Virtual Hug Amy!! I am so sorry that they did this!!

5 04 2011
jennifer nemeth

What doesn’t change…and never will change is the total and complete love, friendship and strength oozing all over you from all of us, your team.

5 04 2011
Kate

Amy, your feelings are so normal. Any of us would be feeling the same way. One person should be telling you what your supposed to do, expect and experience. Its too confusing when the right hand doesn’t know what the left hand is saying. You need to trust your doctor and she should be the only one telling you anything. The others are there for support and encouragement and if they aren’t, get rid of them. If you are dealing with this, so are so many others, but you have the voice and the means to help not only yourself, but your fellow cancer survivors. Your way with words, your persistance and your positive caring ways will make them listen. And remember, the will of God will never take you where the grace of God will not protect you. More prayers going your way.

5 04 2011
Karen J. H.

“Some days are like that, even in Australia,” is a great ending to the terrible, horrible, no good, very bad days in the book. It is NOT AT ALL acceptable from the medical community.
If this can not be changed NOW, perhaps you will have to change doctors, and hospitals. There are several very excellent cancer treating facilities in our metropolitan area. I know how hard this would be, changing horses in mid stream, but it can be done if you feel it is necessary.
I’m praying they will get their collective acts together so you won’t have to. You deserve much better.

5 04 2011
Deborah Ann Peters

My heart aches for you Amy. I cannot say anything different from what everyone else has said already. Everyone has their own opinion of things, but when it comes to doctors who are treating one person, they should put their heads together and form ONE opinion that they agree on, and then pass it on to you.
I am sorry for what you and Don are going through with this issue right now and my prayers are with you both.

5 04 2011
Jackie Tithof Steere

Yes, there’s always such a push to cover up normal feelings. You just go right on ahead and feel those feelings. We will all feel them with you. And, choose to listen to the doctor(s) giving you what you think is the best info. But, I do hope they get their acts together.

6 04 2011
Jennifer Bopp Stegbauer

Amy,
the end of your title today “dashing my hopes,” made me think of Psalm 91:11-12.
“For He shall give His angels charge over you, to keep you in all your ways. In their hands they shall bear you up, lest you dash your foot against a stone.”

6 04 2011
Karen

That is just about the most painful story I have ever read.
What is wrong with those doctors? I read it and sense a lack of compassion on their part. It is unbelievable that all of them have different opinions. Why can’t they all confer before they bring you such varied results and reach a conclusion that might truly help you.
Keep your own faith and keep thinking positive.

6 04 2011
Karen

OMG Amy – I hope your main doc can get these other docs and her on the same page. That is just wrong. Keep the faith girl – you fight the good fight! We are all proud of you and your progress no matter what those stupid, heartless people they call docs have to say.

7 04 2011
Ken and Gay

Amy Dearest, How can you be expected to make sense out of all these differing opinions?? Frustrating as all this certainly is remember there is one physician – the Great Physician who knows everything about you, body and soul! The Lord is holding you daily in His loving embrace and saying – “Fear not I am with you always!!” The prayers are going up and the blessings are coming down – that is a 100% positive diagnois for each and every day!!

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