Tuesday, October 27, 2015

Cyber-Knife to the Rescue!

Fiducial Markers and Cyber-Knife Preparation

Cyber-Knife Bing Image
Four in the morning has never been a good time for me to start my day. But, when I have a 2 hour and 15 minute drive before an important appointment, I manage to spring out of bed without hitting the snooze button on my alarm. Such was the case on an early October Friday a couple of weeks ago. Why I was wide awake and jumped out of bed as quickly as I did, making it out the door earlier than expected, had everything to do with GOLD. In the dark, my husband and I began our westward trip on I-40 to Chapel Hill.
We sailed smoothly into my 8:00 am appointment for the processing of paperwork and for my physical preparation for the fiducial markers placements. All the steps needed for this procedure were happening quickly. But, then it wasn’t. Everything slowed to--what felt like--a stopping of time. I reclined on a gurney, my husband--i-Pad in hand-- in the chair beside me. We waited . . . and waited. It was well beyond my scheduled time before I was pushed to the room where the procedure would take place.

A nurse did arrive that day, pushing me to whatever room I was destined for. As the wheels on my gurney rolled, she asked how I was. I replied, “Not dying as long as there are options.”

“Never heard that one before,” she said.

In the room at last, I moved my body onto a table where the procedure would take place. I was strangely calm. In the past, my body has visibly shook from the terror inside me that I could not control. On this day, I did not need a “calm me down drug”.  As I said, I was strangely calm.  I believe the familiarity of lying on a table with people moving around me going about their particular roles is not as frightening to me anymore. It has become all too commonplace. 

Once secured on the table, pictures were needed of my lung, so through the big white doughnut scanner I went. It was quick and easy.

Next, since the procedure was occurring to my right lung, I was placed on my left side. It was not the most comfortable of positions—right arm resting on the side of my head, left arm tucked along the left side of my body. I looked forward. My eyes immediately caught the image of my lung with the circular white spot clearly visible. There was a black line pointing to the spot with a measurement of 6.99 cm labeled on the screen. That was the distance the needle was going to penetrate my body in order to reach my tumor. 

The awareness of my surroundings ended as soon as I felt the sedation taking me away to nothingness.

So much time went by before I regained complete consciousness, but of course I didn’t know this until I was told. I learned that when the needle entered the plural cavity that surrounds my lung, a pressure change occurred, air entered that space and my lung collapsed—a pneumothorax. Upon hearing this, I was having no difficulty breathing so I thought, “All must be fine.” It was—now. Since my lung collapsed, a chest tube had to be inserted allowing an exit route for the air so my lung could re-inflate. My lung didn’t cooperate completely. There remained a small pneumothorax. Thankfully, the procedure continued. While in recovery, I had two more x-rays done over a two hour period—of which I mostly slept--before it was decided it was not necessary for me to spend the night in the hospital.

In the middle of all that waiting for my lung to recover, I threw-up. The first time was rather comical. The first x-ray was about to be done via a traveling machine. The technician had placed the machine outside my recovery station. I must have just awakened because I remember looking toward her and saying, “Oh no”, I feel sick. As I tried to delay the actual act of throwing-up, the x-ray tech could only offer me a trash can. A trash can! Can you believe that? In a hospital, I was offered a trash can. What is even more maddening is this: after being questioned about medications by the in-take nurse updating my information in the computer when I first arrived, I told her I will throw-up when given any kind of anesthesia. She made a note of it. Only later did I discover that no one took that seriously. I was not given an anti-nausea medication. My husband said that in the beginning of my recovery, one nurse handed my care off rather abruptly to another nurse—no idea why. Maybe she had to go to the bathroom. The new nurse asked me if I felt nauseated. I said, "No." The medication to relieve nausea was placed on the table beside me and was left there clearly not doing me any favors.  Wow, thanks! I warned someone this was going to happen. It seems pretty important to pay attention to a patient that says they throw-up especially when the procedure they are undergoing involves being stabbed in the lung. Patient neglect is simply not cool.

Through another bout of throwing up—this time in a more appropriate receptacle—I learned that 4 gold flakes had been placed inside my tumor increasing my total worth. Four, because these fiducial markers will sometimes dislodge and move to new locations because of the lung’s continuous motion.

Fiducial marker placement is necessary in Sterotactic Body Radiotherapy (SBRT) done by a Cyber-Knife machine. Though I didn’t witness my procedure, I imagine it went something like this: A needle was inserted creating a path to the tumor. Then a guide wire with the gold flake on the tip was pushed through the tube and into the tumor. The guide wire was then pulled back out, prepared with another flake and re-inserted. When the flakes were in their places, the needle was removed. Blood from my own body was injected into the area. I am guessing that helped with clotting.

After I was given the “OK” for release, the chest tube was removed from my side. I was bandaged-up, and we headed home. What a day it was. I missed most of it even sleeping on the trip home.

Simulation For Cyber-Knife Radiation
On the following Friday I had the simulation for Cyber-Knife treatment done. A mold of my body was made so I wouldn’t move during the radiation procedure. Another scan was done so the final measurements could be calculated. Those measurements insured the least amount of damage to my healthy tissue from the radiation. The gold (metal) flakes will be the beacon for the machine. The radiation beams will hit my tumor killing every single tiny monster housed within--I hope.

I can’t wait. It starts this Thursday!  

For those who want more information about this treatment please go to:

UNC Cyber-Knife Center, Department of Radiation Oncology


and http://www.radiologyinfo.org/en/info.cfm?pg=stereotactic

What equipment is used?
There are three basic kinds of equipment, each of which uses different instruments and sources of radiation:
1. The Gamma Knife®, which uses 192 or 201 beams of highly focused gamma rays all aiming at the target region. The Gamma Knife is ideal for treating small to medium size intracranial lesions. See the Gamma Knife page for more information.
2. Linear accelerator (LINAC) machines, prevalent throughout the world, deliver high-energy x-rays, also known as photons. The linear accelerator can perform SRS on larger tumors in a single session or during multiple sessions, which is called fractionated stereotactic radiotherapy. Multiple manufacturers make this type of machine, which have brand names such as Novalis Tx™, XKnife™, Axesse™ and CyberKnife®. See the Linear Accelerator page for more information.
3. Proton beam or heavy-charged-particle radiosurgery is in limited use in North America, though the number of centers offering proton therapy has increased dramatically in the last several years.
See the Proton Therapy page for more information.

Tuesday, October 13, 2015

Changing the Conversation

October 13 is Metastatic Breast Cancer Awareness Day.

About a week ago, I was asked to add my thoughts to the conversation about MBC Awareness to the "It's About Time MBC Awareness Campaign" website. Below is my submission. Please visit Its About Time MBC to read mine and other MBC patient's stories.
Me in October 2015 with one of my dogs, Tucker.

Recently a voice grabbed my attention. It came from my television.

“Together, we can find a cure.”

Those words wound me each time I hear them. This pithy, feel-good, cancer rhetoric is more daunting than many people realize.

It’s about time a new conversation begins. A conversation about . . . our cells.

Cellular biology is complex. Buried within our normal cells, as well as the mutated ones, are answers to the cancer conundrum that scientists continue working to unravel. Its complexity takes years to understand what is already known. It will take millions of dollars as well as an inordinate amount of time to find out what is not known. Some simple language and analogies can educate people about why drugs fail, why the development of drugs is so difficult, and why the ultimate goal of cure for any type of cancer is not so easily accomplished.

The conversation could begin like this: Inside each cell—cancerous or not--are pathways that travel to the nucleus—the brain of the cell. These pathways are like the lines representing roads on a map. The roads are numerous and allow messages to be sent all over the cell activating different parts as the messages travel. The process may begin with a receptor receiving a message. That message is carried along a certain pathway. Once the delivery of the message is completed the whole thing starts again.

You could also think of it this way: When you go to the grocery store, you probably travel the same road every time. You could drive this same route for years. Then one day, road construction causes you to seek a new route. You find it and begin traveling that route until something else blocks your way causing you to find another route or a different grocery store.

That is how cancer works. Information is carried down a pathway to the nucleus until a drug comes along inhibiting the information from reaching the nucleus. Unfortunately for cancer patients, an alternative route is found or a mutation occurs creating a new pathway to deliver the messages of growth, division, and survival. These evolved cells with no drugs developed to stop them eventually become so numerous organ function decreases and finally stops, ending life.

Cancer is complicated. Simplification of cellular biology needs to leave the circle of advanced cancer patients and enter the public arena. This will help people start talking about this aspect of cancer—the most important one—our mutinous cells and their inner workings. This needs to be a part of any cancer awareness campaign. Without it, the general public has been duped into believing a cure is close for all the types of breast cancer.

I do not want to squash hope for a cure; however, only honest conversations about the nature of cancer will move dollars into the more complicated realm of research that aims to figure out how to control cancerous diseases.

Metastatic research is time intensive and dollar deficient resulting in many dead ends, stops, and restarts. Free mammograms, comfort bags filled with goodies, and prevention studies have a place in the cancer world, but these don’t make a real impact in halting any cancer. I want money placed in the hands of researchers doing work on a cellular level. Then people in the future will be able to live longer lives with fewer side-effects from their treatment after their cancer diagnosis.

Without research people like me with metastatic breast cancer are left to paddle alone in our oceans of tears suffocated by our own lungs, poisoned by our own livers, broken by our own bones, and tortured by our own brains all because our cancerous breast cells found a new home and are killing us.

It’s about time to change the conversation for the sake of my children and yours.

Thursday, October 1, 2015

The Other "C" Word- an update

This was me on Monday.

Sh*t. No that doesn't make me feel better.

F*ck. That one isn't releasing the anger I feel inside either.

Is there a curse word anywhere that can express how I feel?

NO, NO, NO!!

Monday, I saw my scan. One mutinous 13 millimeter spot in the middle lobe of my right lung glowered at me. It gave proof to everyone in the room that my cancer was growing, no longer responding to TDM-1. 
The image is not mine, but you get the idea.

But . . .

I had done my research.

"Could radiation be targeted at that one spot to push it back giving me more time on my current treatment since it is working everywhere else in my body?" I asked.

I knew the options left for me were far from being side-effect free. If I could avoid them, that is what I wanted.

My oncologist opened her eyes wider. "Stereotactic Radiotherapy. Yes, a possibility."

Hope was in the air.

This was me on Wednesday.

Walking out of the cancer hospital, the plastic bag I carried ripped exposing all I carried in it. My water bottle, soda, and sweater scattered on the concrete walkway. I picked it up and moved away toward the building's side in order to reorganize my belongings. As I knelt placing each item in a different bag my body shook, my hands reached upward and cupped my eyes. Exploding through my brain were thoughts of the words I had heard no longer than 10 minutes before. 

"I think there is a potential for a CURE."


I knew the statistics. I knew what I had been told and read about concerning people like me with stage IV breast cancer.

I said to the radiation oncologist, "Please don't say that to me".

He said, "I am not bull-shitting you. (Really--his real words!) I am positive and also a realist. I think this is possible. You have responded so well to treatment and are showing only one tumor. I say we essentially cut it out with radiation without actually cutting and continue treating you with TDM-1."

That is the plan I was hoping for.  (And, he said my oncologist was brilliant. I guess he didn't know the idea was mine.)

This guy was everything I could ever ask for in a doctor--energetic, positive, wanting to treat aggressively, willing to take chances when the opportunity to make a profound difference in someone's life presents itself. The description of a doctor's role to "comfort always, treat often, and cure sometimes" was being applied to me in every way.

I stood up, glanced around to find two women staring at me, checking to see if I needed help. Catching their eyes, I smiled and uttered, "I'm all right." I suspected they knew what I might be feeling, after all they were sitting outside a cancer hospital.

I found my car, unlocked it and sat in the driver's seat. My neurons were firing off through to the end of my fingers. I had to message my family. I wanted to tell the world what had happened. Someone is trying to save me.

While I waited for my heart to slow down and my senses to bring me back to reality, I confirmed to myself--I am a realist. Despite what he said, I knew this could all fall to pieces. But at this moment I want to believe what he said is true. For now, I am holding onto his words. The words I have been longing for.

The other "C" word, "cure", is the most beautiful word in the English language even if it only means living long enough to die of something else besides cancer.

Details to come.