ERCP

Yesterday was the big day. The day my gallbladder would be taken care of. NOT!

How many ways did this all go wrong? Right from the beginning the trajectory was off. Dr. S ordered a procedure. I was able to almost change this by insisting on a diagnostic test first. But then I never heard back from that doctor. He claims to have left a message and written me a letter, but I didn't receive either. Undoubtedly, he sent them to a different patient. So I was accused of lying and he did a HIPAA violation.

It wasn't until I was on the gurney, with an IV in my arm, that I learned that in essence, the chance of correcting the gallbladder problem was almost nil, and the risk to my future health was huge. As the young Dr. B explained what was going to happen, what became clear was I shouldn't even be there. I had the wrong doctor, was in the wrong room, and I was on a train that was going to the wrong city.

As it happens, there were no complications. They didn't damage my pancreas, they didn't nick my esophagus, and no damage was done. I was sent home, drugged and angry.

But this is time and energy I don't have to waste. I have taken a full week off from work. Now, I have to find the time to do this again for a surgeon.

I will never let this happen again. I will never again loose control of my health care and be bullied by doctors into taking a path that doesn't feel right to me. At least this lesson didn't come tied to pancreatitis or internal bleeding.

More Waves

So, it has now been two weeks since my dx was confirmed. I am surprised by how quickly I have just gone back to life. And I am also surprised how often I am startled by the realization that I am sick.

The lying has become easier. I have actually lied four times. Of course the subject would not have even come up if I weren't having this surgery on Friday. So, when they ask if the cancer is back, I lie and say 'no.'

Since I have decided to keep this all a secret and I feel like I am lying to my family too. I haven't directly of course.

I have added more layers to that onion. It is complicated to keep yet another part of my being from all of them. I wish I was surrounded by a supportive family. Surrounded by love. But this isn't something they can give me. They just don't have that capacity and it isn't fair to ask this of them.

And finally, the fatigue is really hard to deal with. I don't know if this next level of fatigue is due to the faslodex or my body's way of facing the progression. We'll see what the blood markers have to say in a couple of weeks.

Until then, I am finishing up some work and looking to the surgery on Friday.

Lost

I am lost right now. Is that the right term? I am filled with feelings and thoughts. I am having entire conversations in my head. I have no one to talk to.

My good friend, Kristina, has been wonderful. By email, we are communicating. But she is ten years younger than I am and in a totally different place. Her life is filled with a young child, family, moving out of cancer-land. Her job is to take care of them and herself, not to take care of me emotionally. Her input and support is invaluable, but I have no right to burden her. And it simply isn't fair for her to be pushed into this role. I am already asking too much of her. [She would disagree, but she doesn't know when to say 'no.']

How do I choose someone to be there? How can anyone who hasn't been through a cancer experience help or tolerate the endless babbling? Where does one find this magical person? It would need to be someone that I can help to so that the relationship was balanced. I could probably pay a therapist, but why... I don't need therapy really. I need a friend.

p.s. My husband of course talks... but this all makes him so sad. He can't focus for hours afterwards. It needs to be someone whose world won't collapse as a result of this diagnosis.

Waves of Sadness

I love twitter. I get these random messages from people I respect that lead me to worlds I didn't even know exist. Today, someone posted a video link with this simple message: Cat tries to revive dead friend http://post.ly/fGPu

Stupidly, I went to look. A live cat is pawing a dead one, trying to get it to wake up. He sits on top of his body, pawing, desperately. And the flood dams have broken.

Now I know why I keep saying "I'm sorry" to Leslie. I am his world. I am the center, sides and middle of his life. And he is going to be that cat. Hugging me as I leave. I am not sure how he will be able to continue alone. Together, we have created a unit; a life that is completely self-contained.

And then I thought about Lauren. My lovely daughter who is still finding her path to full adulthood. My daughter who calls me when she needs a recipe, job advise, or relationship insights. I am not her best friend, but I am her best confidant. She trusts me to always give her an honest and loving opinion.

As I watched this video, the tears just began to stream down my face. Years of sadness were suddenly released. But these tears weren't self-pity. These tears were for the two people I love most in the world being forced to continue without me, long before a normal life span.

What I don't know yet is what I am going to do with these feelings. Clearly, I can't spend the next unknown-number of years crying. That would be boring. Somehow, I have to make all of this time more powerful or meaningful. Not sure what that means. After all, I try to live that way every day already.

Surgery

As I alluded in the last post, the pain I have been having for 10 months is actually a gallbladder gone bad. I am scheduled to have surgery on May 21st. They will either remove the stone, or remove the gallbladder. They will decide once they are in there.

Another body part that evidently I don't actually need.

Dr. Roger Has a Plan

For the past few nights I have had a really weird, yet surreal dream. There is a stage with three curtains. The stage is straight out of "Name that Price" or whatever that old show was called.

The excited voice says "And behind door No 1 is surgery. We will remove your breast and you will take months to recover. Or we have Door No 2. Chemo that will make you bald and sick again. And finally, Door No 3, you will get a new aromatese inhibitor." The voice sounds excited, like I am winning a trip to Tuscany, or a week in Paris. In my dream, my mind is a running commentary, trying to analyze the options as they are presented. A Vanna White wanna-be is in a gold lamé dress, her arms gracefully pointing to each curtain as the choices are announced.

Well, today's meeting included no gold lamé I am happy to say. Just two white coats, Leslie and myself. Dr. Roger was clearly relieved that there were no bone mets. [If there had been he was planning some really heavy guns! An interesting aside.]

He sees mets along the chest wall [where my original tumor was attached] going vertically, and one by the hydrbra on the outside of the lung [not a lung met.] He confirmed what I heard. Minimal. He then began to draw pictures. He explained that the estrogen expression is actually two distinct expressions [alpha and beta, scientists are sooooo boring.] The aromasin blocks one of them while the other expression, which is rarer, is left alone. Surprisingly, Dr. Roger is continuing the aromasin, but adding Faslodex to block the second expression.

This is a monthly injection. Damn big needle into my butt. 63 seconds was my count, but I could have been counting fast. I was given Nurse Judy once again. She wasn't that happy to see me, which was nice.

Follow up is now monthly. I will get the blood marker bloods drawn monthly along with the injection. I will meet with Dr. Roger every other month, unless the markers indicate that the new protocol isn't working. He wants a three month window to access success.

Dr. Roger agrees that for now, no one will need to know I am 'sick.' And once this gallbladder thing is dealt with, I should be back to my normal self [complete with aromasin side effects.]

So, we have a path and my butt hurts!

The Results are In

May 3, 2010

Again, I decided not to look online to read my own test results. No call on Friday, and so a weekend of waiting. Woke early Monday morning just in case Nurse Lauren called. But the phone didn't ring.

Finally went downstairs to make some lunch, and the cell phone rings. I don't generally answer the cell during lunch. That is the business line. But as it rang no 6, I frantically tried to run up the stairs before the voice mail answered. Didn't make it. And then a voice message... this is Nurse Lauren and I want to discuss your results. No breezy 'All Clear.' Nope. Not this time. I called back immediately. Voice mail. Again. Again. Again. Wait five minutes. Again. Again. It has now been 45 minutes. And, the phone rings.

Mets. Minimal. Dr. Roger wants to see you. Selena will call. Oh there was more to this conversation. She couldn't have gentler or nicer. She answered all of my questions. Mets. Minimal. Treatment Plan.

We are back on the train. And this one goes to the end.

Two Days of Scans!

April 28-29, 2010

And the scan marathon begins.

First up, the PET. Preparation for this scan is most unusual. Lunch the day before is normal. Dinner however, demands protein cooked in oil. No vegetables, no carbs, no sugar. I pondered what this dinner would look like. So different than my normal eating habits, and I simply rejected the idea of sauteed chicken breasts. And then it hit me. Tenderloin steaks with hollandaise sauce. Who eats hollandaise sauce anymore? And yet, here was the perfect opportunity. It was medically necessary!

Breakfast the next morning, only black coffee and a lovely bottle of Clear Scan. Clear Scan is flavored canola oil. It tastes like slurpee syrup. Fake, sweet and strangely familiar. Lunch was a repeat. And we were off to the hospital.

The PET went alright. And then we moved to the MRI machines. This didn't go as well. Turns out that my body can only hold itself still, while lying on the back for a finite number of hours per day. I had to be pulled out of the machine twice to allow me to move my shoulder. Otherwise, I would have gone crazy from the pain.

We finally arrived at home around 9pm.

And then turned around and headed back the next morning. The MRCP was a different machine. Much less loud, fewer tests, but far more time between tests. And no leaving the machine. Madame technician was just not interested. Clink Clank Boooooin.... and before I knew it, I was free.

And the waiting began.

Scans

April 20, 2010

My first scan was the bone scan. Walter, my scheduler, gave me the wrong location so I was on the wrong hospital campus. From there, that office sent me to another bone scan machine, but that wasn't the right place either. Finally, I called the number and discovered where I needed to be. By now, I was a half hour late. Not enough time to have the radioactive injection, wait and then have the long scan.

Explained why it was imperative that I be done by 2... and that department went into overdrive. Young student tried the IV and was miserably unsuccessful, but he didn't try a second time. Nope, he called his supervisor who slipped it in smoothly. Radioactive stuff in my veins, I found a quiet corner and read.

The scan was better than my last one. They no longer tie your arms to the bench. Instead they slip "wings" under the bench and your arms rest there. I didn't find the 40 minutes in the tube to be too much. I was out of the hospital at 2:03, and on my way.

The next day Nurse Lauren called and left me a chipper message. "The bone scan was all clear."

_phew_