Saturday, September 12, 2009

The Unvarnished Truth

What a time.

I am going to give you a piece of unvarnished truth about myself. This last month has been perfectly awful. Truly. The waiting. The uncertainty. Trying to 'remain clam' , watching Cara breakdown, breaking down myself. Yesterday, though, yesterday took the cake. (I took the cake? Whatever.)

Next week I am going to Pittsburgh for my second opinion. After that is surgery. I received a call from the hospital there this morning as I got ready for my bone scan. They had a lot of questions for me, and I began answering them. And then the woman said, "Your doctor does not believe that this is anything, but wants to be certain." I was, as they would say 'down under'. gobsmacked. The first thing that I thought is that she must have gotten me mixed up with another patient. I said, "Um. I don't think so. My mastectomy is scheduled for the following week. They will remove the mass from my shoulder at the same time." (And inside, I thought, 'the doctor does not believe this is anything? Really?!!!!' Hope takes root.) The woman explains to me that there needs to be a 'breast study'. She explains that a bilateral diagnostic mammogram needs to be done, an MRI, even a biopsy. She counsels me not to let anyone lay a hand on me until these things are done. "There is no going back to undo a mastectomy if a mistake has been made." She gives me a list of things I need to make sure I have when I come. She calls back later to tell me that I have an appointment Monday morning at 7 AM for the mammogram and the MRI. I have an appointment w/ the surgical oncologist Tuesday at 1:30 PM. I have to be back Thursday AM to speak w/ the oncologist. It will be a day of testing. At the end, everyone will confer, and I'll be sent back to my own doctors with Pittsburgh's thoughts on the matter. We'll decide where to go from there. The woman also tartly says, "It is not even certain that you have cancer."

You know. Here's the unvarnished truth: Today I behaved like an emotional asshole. I called the cancer center to find out when my last BUN/Creatonin had been done, and to ask them to fax it to Pittsburgh. But, in addition, overcome with longing, I said, 'have I misunderstood something? Does Dr. B think this might be nothing?' and she was standing there. They put her on the phone. 'I never said that,' she said. And like a child, like Cara had tried to get assurances from me that I could not give, I began to ask. I could not stop myself. "Is it possible that this is NOT cancer? I mean, I'm not asking for a crystal ball here, but really, if you went with your gut, would you guess cancer? Or not? What are the odds, do you think, that it's not cancer? Because they sounded kind of sure that it might not be..." She stumbles for words, because I have caught her off guard. She cautions me. She avoids numbers. She tells me that the second opinion will answer those questions more completely. Finally, she gives way under my badgering, just a little, and says that it is possible that this is a false alarm. I hang up completely flummoxed, but also, a bit of excitement takes root at the thought that I might not have cancer after all. It's not till I'm down the road on the way to the hospital for the bone scan that I realize that her answer quantified nothing.

I got my medical records today to take to Pittsburgh Monday morning. I made copies of everything. I got all the imaging that has been done on computer disks. I've got actual films as well. I've got a load of stuff to take to Pittsburgh. I've spent the night poring over this stuff and the truth of it hits me. The roller coaster has been cranking up a hill all day, and tonight it came barrelling down the other side.

Reading my own doctor's reports, I come to understand that her intention was never to authorize the mastectomy without an MRI, without a bilateral mammogram, without whatever they need. The breast study was being done in Pittsburgh, with state of the art equipment far more sensitive than we have at our small hospital. There was certainly no need to put me through tests (some of which can be quite painful) both here and in Pittsburgh. The surgery was tentatively scheduled for the week after my return from Pittsburgh with that data. Reading my own doctor's words, I see her concern. Reading my own doctor's words, I see that she is welcoming input from Pittsburgh. She lays out her concerns quite well. She notes that the mass (the one the surgeon found deep in my shoulder muscle) has gone from not being palpable to being palpable in 21 days. She's faithfully documented where the pain is. She's listed why they think surgery is, pending the results of everything else, the primary course of action. She's listed the facts, the figures, documented everything carefully. I will take these things to Pittsburgh with me on Monday. Monday, Pittsburgh will take these records, but they will rediagnose me, as if they had no records. As the nurse put it, "They are not even certain that I have cancer." And it won't be certain in their minds until they complete the testing. That is what a second opinion is.

The fact is, something has convinced both the surgeon and the oncologist here that these results will likely be cancer, and they are preparing for that. The nurse that was so outraged on the phone had not yet seen the evidence that I will bring with me on Monday. It is easy to second guess, I suppose, but the one thing that I know for a fact is that I have a good oncologist, a very compassionate woman. The surgeon is gentle and thorough. I know that they are both kind. Proactive. Today I pressured a doctor who deals in facts and figures. Basically, I asked her to pull a number out of her magic hat, to draw conclusions before the data was in. I was quite persistant about it. I owe her an apology.

What it comes down to, the long and the short of it, is 'do I trust my team?' And the answer comes to me again. Yes. I do. These are good people. I will go to Pittsburgh, and if the news is different from what I've been lead to expect, well, I guess we'll all do a happy dance. But the fact is, my doctors here, the ones who've been working with me right along, have some real concerns. Pittsburgh will give us the second opinion. Then I will have the numbers that I wanted so badly.

You know, I have really watched myself come unhinged over the course of August. Really, I've got to get a hold of myself and buck up, because now, my friends, now I am acting like a baby.

21 comments:

rhubarbwhine said...

I don't think you are acting like a baby at all. Not in a million years.

Caroline said...

you are not acting like a baby. Sometimes now we are too quick to assume the worst and our doctors also more quickly assume cancer if there is anything - because we already had it. If someone with out your medical history went to a doctor about a shoulder pain, they would probably be sent to a specialist, have an xray and get a cortisone shot or something. We, on the other hand, get the OMG its cancer trip every time - both from ourselves and our doctors. Me, I try to wait for the final opinion to get my answers, and really hope I don't go crazy and drive myself insane in the meantime. So if you do the happy dance on Thursday, have a party, go do something fun!

Hal Johnson said...

No, you're not acting like a baby. And, I hope that "final opinion" brings good news.

Bush Babe said...

I disagree. Now you are being utterly human. Now you are being wise, in seeking another version of your 'truth' and wondering what the second opinion might be: if it might be different and, therefore, better. That's called hope. If that's infantile, then so be it. We all need our inner child, our hope.
{hugs}
BB

Bob said...

You want to understand everything that's going on. You wrote a piece a few days ago saying you would do things different this time. You want clear understanding and to that you are entitled. If that means you're a 'baby,' so be it. But it really doesn't.

Anonymous said...

No Deb, I think that your's was a perfectly logical reaction from someone who has been through what you have been and you are perfectly entitled to it. It sounds as though you are happy with those who are ultimately treating you, and that is good, It is also good that you are asking questions and looking to understand and get some control. I think it was good you could let go and take some charge and get some understanding. Our prayers and best wishes go with you, and whatever the outcome of today's appointments, I know that you will deal with them in your own special way. Barb

WhiteStone said...

Trying to sort out everything that comes at us (symptoms, words, reports, statistics, etc) is a hard thing. This C is something that we never really looked at before and now, all of a sudden, we are being body-slammed. Literally! I'm glad you are getting the 2nd opinion. And in the middle of the night, I thought to myself, why am I not doing that! I may.

Laura Jane said...

Are not! Are not! Are NOT!

You are being assertive. Getting the facts. Seeing the clear picture, wiping the fuzzy bits off the screen.

This is exactly as you knew it had to be this time. NEVER apologize for grabbing a morsel of hope,and having to swallow the unvarnished truth a second time.

You are NOT a baby.

Mikey said...

For heaven's sake, in this situation, you can act however you want. I'd be unhinged, just like you feel.
You're such a good person, always thinking about how other people feel. It's ok to think of only yourself right now. Don't apologize for asking questions and pushing for answers.

We're pulling for you, all the way. Wish I could just take that load off your shoulders for a day.

PaintedPromise said...

what Mikey said...

Kelly said...

You've gotten some great comments here and I second (and third & forth) what they've all said.

Back to waiting and hoping for good news.

Continually praying for healing, comfort, strength and courage, no matter what the outcome.

Kelly said...

Guess I could "fourth" what they say, too.

(don't ya hate it when you realize after the click that you made a typo?!)

Lydia said...

Debby, feel free to unhinge all you want. You can demand, ask, push and berate if you want to. Just get what you need, and if you need to apologize later, so be it. Just get whatever it is you need.

Believe me, you are not the hardest patient your doctor has worked with. She is in the business, and knows how this works with people. She is ready for you.

One last thing, you are definitely not a baby.

Karen L. Holmes said...

Debby,
Your previous comments expressed nearly every sentiment I could say and more. You're absolutely NOT a baby, and your fortitude and perseverance show through for everyone to emulate. Thanks for your transparency and humility, friend. As a fellow breast cancer survivor, I'm with you every step of the way, praying for you, cheering for you, and yes sometimes even crying with you, as you travel along the challenging road. Although we've never met, I want you to know how much I care about you. A dear friend once wrote to me, "There is no pit so deep, that He is not deeper still."

Hang in there. God wlll never leave you!

Mrs. Spit said...

After Gabe died, I wanted numbers. Because pre-e does strike again, I wanted exact stats. And they can give them to me. But finally the internist sat down next to me, looked me in the eye and said "In the end, all the stats are useless. It's either 0% or 100%. Either you get this disease, or you don't."

I'm sorry for the up and down. They are the hardest things to keep up with.

Pam said...

Baby??? Not on your life!! I can't even begin to imagine what my emotional roller coaster would be like should I ever walk in your shoes!!

Your post was amazing and I stand in awe of your and your courage.

My thoughts and prayers are with you on this journey no matter the outcome!!

corymbia said...

A baby??? No way lady - you have a right to know and understand all the data in a form that makes sense to you.

jeanie said...

I 18th everyone.

A baby would just scream and wait for the solution to be provided.

A toddler would throw a tantrum and even when reason was shown still find a reason to throw herself on the floor.

A child would say how unfair it all is and ask for a reward.

A teenager wouldn't ask any questions as they know all the answers.

A mature woman who has been through what you have been through and is facing what you are would do exactly what you did - and are doing.

Hugs.

Kayleigh said...

There is no one right way to act about this, from minute to minute you feel the way YOU feel and are entitled to those emotions 100%. Anyone who ever tells you different, including that inner voice in your own head, lol -- needs to take a step back.

Feel it all and do your best...and know that you are not alone.

kpaeck said...

wow, what great comments you have from some great people. I agree with them all! You are not and have never acted like a baby through all of this. I know we haven't had alot of together time while you have been going through this and I regret that, but never think you are acting like a baby. You have been so courageous in the face of this battle. You have a right to breakdown and cry, you have a right to ask whatever questions to whomever you want to ask them to. This is your life the answers to those questions affect and you are entitled to understand the answers. I am sorry that I couldn't say or do anything more to help on Friday. I wish I could have found the answers you seek instead of just the reports and statistics. Please know that we will be thinking of you on Monday and everyday. You are in our prayers, we love you and will always "HOPE" for the answer to our prayers!

A Novel Woman said...

Emotional asshole? Sheesh, I've met a few of those along the way, and you do not qualify, not even close, missy.

As far as I know, there are no etiquette books on the right way or wrong way to handle this crap you've been handed. You can only be yourself, speak the truth, and keep going, day by day. We all care about you, JUST as you are.