Monday, July 16, 2012

The CT Results Are In

My parents and grandparents have been very involved since we have been seeing doctors at City of Hope. When we meet with a doctor, there are either 3 or 5 family members in the room. So, you can imagine that a room is pretty packed with the 5 of us before the doctor even gets there.

Picnic with my cousin overlooking the
Pacific ocean in Corona del Mar, CA.
The 4th of July was coming within a week or two and I spent my time working remotely from my parents house in California. I was able to get together with my cousin and her husband to celebrate a little, enjoy some sun and overlook the ocean at one of my favorite spots in Corona del Mar by having a picnic lunch.

It was getting close to the end of June and it was time to meet back up with the doctor and find out the results of the biopsy. I was told that the doctor was going to present my case to the "Sarcoma Board," which was comprised of numerous doctors and nurses from different areas of the hospital. This included the orthopedic surgeons, medical oncology (chemo) and radiation oncology areas. I didn't know it at the time, but my case was a BIG deal at this hospital.

City of Hope has many buildings on its campus. As a research hospital, you can imagine that there are various buildings for various studies, just like a college or university campus. Three of the buildings are connected by basements and skyways; these are the main patient clinics, testing facilities and in-patient rooms. The building in the middle is called "Brawerman," and is the main facility for out-patient clinics. Almost all appointments with doctors are in this 3-story building with basement access. The third floor is where we are to find out the results of the biopsy.

We checked in at a sliding glass window where the receptionist sits. This small area backs up to the nursing station which also includes all of the patient files of those being seen that week. Once checked in we are told to sit in the patient waiting area 2 doors down. We walk through the door flanked by 3 floor to ceiling connected glass walls only to find a kids play area equip with a 6' high kids playhouse, video game table from the 1980's, bean bag chairs and 2-1/2' high bead maze. After finding adult sized chairs, I asked my family why I had been taken to the pediatric clinic. Was it because I came with my whole family? Did they think I was a kid and not an adult? Or, was it my childish looks? What? This felt really weird.

After 20 minutes or so, my name was called for the nurse to take my vital signs. Once that was completed I was asked to go back to the waiting room. We sat there as a family for about another 15 minutes when I was called again to the back. This time they were taking me to a patient room so I made sure my family came with me. As we walked through the hall past the long nursing station we saw from the check-in window, we noticed that all of the walls along the way were all decorated with bunnies, sail boats, clowns, etc. I was really in the children clinic. The room they took us too was decorated with children borders and had a book rack with children's books and magazines. Boy was this weird for an adult to be seen in the ped's area.

After waiting for at least another 15 minutes, the doctor walked in. And another. And another. And another. They kept coming. It was a white coat parade packing into this appointment room. Officially, there were more doctors and nurses in the room than there was of my family of 5. With all of these medical professionals in this room, which was now standing room only, I started getting really scared and didn't know what I had gotten into nor did I know what to expect. My doctor started by introducing all of the doctors. There were so many, I couldn't remember any of their names. I did, however, recognize the radiologist who had performed the biopsy several weeks before. (I think he was still a little embarrassed over our first meeting explaining my "procedure" to me.) All of this was way too overwhelming.

A micrograph of Adenoid Cystic
Carcinoma (ACC) tumor.
The doctor turned his attention to me and my family. He brought up my past history with breast cancer, the symptoms I was having now and the imaging that showed the tumor. He explained that certain cases that came through the hospital were brought before this board of doctors and nurses to act as a "think-tank" for treatment options. Routine cases were treated with conventional methods and treatments. Rare diseases or patient types gave way to this group to be innovative and explore alternative treatments that may mean drug-trials and other types of options. My case was unusual and rare enough that treatment options were not known and must be discussed to find the best treatment for the location of the tumor and the complexity of my case. 

He referred to the biopsy and recent report returned from pathology with the results. He told us that the pathology of this tumor confirmed that it was indeed a metastatic tumor of the breast cancer from 4 years prior. What does that mean? According to, "Metastatic cancer is a cancer that has spread from the part of the body where it started (the primary site) to other parts of the body. When cancer cells break away from a tumor, they can travel to other areas of the body through either the bloodstream or the lymph system (a collection of vessels that carry fluid and immune system cells)." Well, I had a feeling at the beginning with the MRI this was the case. I was clearly not shocked by the news. And, the doctors knew it. I think they all expected me to break down and cry or something. But, this was something I was prepared to hear and it didn't phase me.

As is known in my family, my mom and my grandmother are the "queens of questions" among other things. They have a question for everything you say. Right on point, they both started asking questions of the doctors as to the next steps. Where do we go from here? My doctor advised that this group of doctors in the room had discussed in GREAT detail my case. The reason we waited so long for my appointment that day was that they had been having a very "heated" discussion as how to best deal with this particular tumor in this particular place of my body. They were also discussing whether they should take my case or not. To this day, I do not know the details of all this discussion.

Overall, the orthopedic surgeon would be the doctor taking my case from this point. He and his nurse assistant would set up another appointment to go over the case with their recommendation of treatment. The other doctors were there to offer any assistance once he made his official recommendation, if needed. Until then, he would review the case in detail and weigh all of the options available, including innovative options. So again, we are in a holding pattern. This time I am running out of fuel and need to land this plane soon. "Mayday. Mayday. Stacey to God. Come in God. I need You. Over."

Once again, you have to wait for the next part of the story.

"Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint." 
Isaiah 40:28-31

Is there something you have been waiting on the Lord for? Are you weary? Feel free to share with us here. I will pray for you as will others who read these posts.

Blessings All!

1 comment:

  1. I am praying for you, Stacey. May God's presence, mercy, and grace sustain you as you wait. Praying for healing, as well!
    Your journey and your attitude bring glory to His name.
    Yours in Christ,
    Shirl Lee Huscher