The Back Story - Part 2 - healthy living better

Chapel Hill

April 15^th
The trip to Chapel Hill took just over 2 hours. I took apart an old quilt while Greg drove. The conversation between Greg and I was simple with an occasional comment about what was being discussed on the talk show coming from the radio.

The parking deck was on the left after we entered the UNC Health Care Complex. To the right, perched on top of a very large hill were the different hospitals each with a specific specialty. The farthest building on the right was my destination, the Cancer Hospital.

After parking, we walked up the hill and entered the building through the electronic doors. We continued walking until we found registration where I checked in.

Since we were early, we decided to get a bite to eat. We found a cafeteria in the Children’s Hospital which was the building next door. There, we grabbed prepared Caesar salads, found a table, and sat down to eat. I had a hard time eating mine because the dressing was too powerful. The mood was somber. I eventually broke the silence by commenting about the young boy that sat at the table next to ours.

“Can you believe that little guy beside me ate both of those huge pieces of pizza? Our son would have had no problem finishing those, but he is not as small as that kid.”

We soon cleared the table and headed to the second floor where my appointment was to occur. I checked-in at the desk, and we sat down to wait. We didn’t sit long before being escorted into a room to wait for the doctor. It was late in the afternoon and the atmosphere had an odd quietness about it. The room was small with a large window which allowed for a great view of several other buildings. The sun was filing the room with light. That has always given me a most wonderful sensation. But, today I could not quite capture that essence.

First the nurse came in to go over the medications I was currently taking. Soon she left and a young girl arrived to ask if I wanted to be involved in a study.

“I would only have to fill out a survey every so often”, she explained.

My input would provide information to the doctors about my lifestyle and how it affected my diagnosis and outcome….something like that. I declined to participate today and asked if I could think about it for later. Privately, I was a bit annoyed because I am a new patient dealing with my own new situation. I did not need to be bombarded with that type of decision now, at least not today.

Next, a woman named Ms. B., a nurse navigator, walked into the room. She was someone I could call if I didn’t understand something or needed help getting information when no one else is helping. There was a short conversation about where we were from and how she knew some people in a town not far from where we lived. She remained in the room when the oncologist arrived.

Dr. R. was and is much younger than me. I am guessing she is in her early to mid-thirties. She is petite with straight, short, brown hair. Her questions to me began with the drugs I am currently taking. Then she listened to me tell my story matching it to my documented medical history and to my most recent scans. I saw her glance at the page that I had completed as I waited in the lobby. The question I had answered explained why I thought I was seeking medical attention. At the top of the page I had written “metastasis to internal mammary nodes”. At that moment I believe she realized that I wasn’t in full understanding of my condition.

She said, “Let me print out a copy of the radiology report so we can go over it.”

Dr. A. had not mentioned anything about my lungs, but somehow I felt that didn’t mean my lungs weren’t involved. I was physically shaking fearing what I was about to learn.

First, my thyroid was reviewed. It had a few sub-centimeter hypo-densities. She didn’t think these were concerning.

Next the report described the 1.9 cm anterior mediastinal paratracheal mass surrounding the right brachiocephalic artery. I was aware of this mass, but now I had more information about it. At this point, though, I had not comprehended all the details.

The doctor explained that this mass was responsible for my hoarse voice. It was pressing on my vocal nerve. I had been experiencing hoarseness since July. At that time I had gone to see an Ear Nose and Throat specialist and was diagnosed with a paralyzed vocal cord. He ordered a CAT scan of my neck to make sure that no lymph nodes were enlarged and pressing on the vocal nerve. He let me know that breast cancer can present in this way. It revealed nothing suspicious. If a CAT scan had been done of my chest at that time, I probably would have been made aware of my condition sooner.

Then Dr. R, said, “Your right lung has scarring from prior radiation.” I looked down at the report without really reading it and took a deep breath……” you have several nodules in both your lungs.” All I could say was “shit, shit, shit!” Oh my God, I am going to suffocate! I truly understood at that moment why people jumped off of bridges.

I tried to get control of my emotions. Greg quietly sat beside me. I said, “Ok, all we can do now is extend my life, what do we have to do?”

Then I looked at Greg. I suddenly looked in his eyes and started sobbing again.

“I am so sorry, I am so sorry.”

I turned back to the doctor and explained that we have had such financial difficulties over the past few years. This was happening at such a bad time. (I was feeling tremendous guilt at that moment because I knew it was going to cost plenty to keep me alive.) I don’t remember Greg saying anything. He either had his hand on my back or on my leg. I believe he just didn’t know what to do.

I don’t remember anything else the doctor said about the report.

She then talked to us about all the counselors that were available to help not just me but the entire family. Throughout my life, I have never sought counseling. And, honestly, the only help I needed or wanted was to get rid of this cancer and not be in this situation. No counselor could do that.

Next the conversation was about where I wanted treatment to be done. She was agreeable that Wilmington would be best since it was close to home. She said she would call the pathology department in Wilmington to find out what the test results were for my specific type of breast cancer. On Wednesday, her team would discuss my situation and come up with the best and most appropriate plan for treatment. I was to make an appointment with Dr. A. in the next few days. She would speak to him and then give me a call.

When the doctor departed to contact pathology, she had suggested I take some Ativan to calm me down. Throughout all the years of this struggle or any other struggle for that matter, I never took any kind of antidepressant or anxiety medication, but today I said, “Fine, bring it on!” Two little pills later and I was calmly talking to Greg about how we should tell the kids. I didn’t want anyone else to know because everyone feels sorry for people when they are sick. I didn’t want that. I want them to say, “Hey, Lisa, how are you?” not, “Hey Lisa, how ARE you?” with the real question hanging in the air being specifically about the cancer.

After the doctor returned, she said that the Her2 neu test had not been run. She stated that there might not be enough tissue from the biopsy to run the HER2 neu test and to find out how much estrogen and progesterone were affecting the growth of the cancer.

I asked, “Why did those need to be run when it was clear the cancer was breast cancer just like before?"

She said, “Sometimes breast cancer changes.”

The type needed to be confirmed so the best treatment would be given. If there was not enough tissue then another biopsy would need to be done. Instead of the fine needle biopsy that had been done previously, a core biopsy would be performed allowing for more tissue to be taken.

We left that afternoon with the understanding that the doctor would call me after her meeting with her team of doctors. She would call me to let me know, after speaking to Dr. A., what their recommendation for treatment was.

The trip home was horrible. I cried and Greg just held my hand.

Please no! I can’t leave my children

Well, I must say an incurable stage IV diagnosis, especially when you have 4 children that you love so deeply, is the worst possible news. I couldn’t shut the thoughts swirling through my mind of what this diagnosis meant. For the past 18 years, I have been driven to care for them, educate them, keep them safe, and love them. My one goal has been to be there for them into adulthood. How could this be happening? It was out of my control. The cancer was relentless. How will Reese truly remember me? She is only 10. She hasn’t lived long enough to really get to know me. It was my job to take her to gymnastics, dance, piano or tennis or whatever. I was so looking forward to doing with her what I had done with the other three.

I want to be there for all the different phases of my children’s lives. To see them get married, have a career, or just be an independent person. This nightmare was happening because of a few microscopic cells that were missed during my mastectomy. I should have been cured. And then almost 5 years after my mastectomy, chemotherapy and radiation and a year of Herceptin just couldn’t stop it.

It can’t be true

After that horrible day of April 15^th, I remember on two occasions as I was sleeping I awoke with a jerk. My body suddenly tensed and once I relaxed I had to remind myself that it was true. I was in fact going to die. Not the “Oh, one day I am going to die, but a complete realization that I am going to die, sooner than I had planned. My time might be 6 months, 3 years, or 5 years. No one knew how long. The fact was, I would be really lucky if I lived another 10 years. That is a whole different concept than I am going to die one day in the distant future. Everyone knows that. And the fact that I will never feel as good as I feel today, which, by the way, isn’t the best I have felt in recent years, is truly a reality my consciousness was having a hard time accepting. Hopefully, my health will decline slowly. I silently, secretly tell my body, “kill the cancer, kill the cancer”. Could it? Maybe there is a miracle ahead. Sure, not too many miracles have happened to people in my situation, but maybe? Please…

My husband

So now I know how bad my situation is. Greg ended up breaking down after he called his mother and told her the news. He let go of all the emotions he had caged inside him only after he sucked down a few shots of Bourbon. That made me furious. I want to see that he cares enough to be emotional about the situation, but alcohol has no place here. See a counselor, take some Ativan, but please no alcohol. I have never seen anything good come out of being intoxicated by alcohol.

The Plan for Treatment

April 17
Dr. R. called me Wednesday afternoon. She said that my first line of treatment should be Taxotere, Perjeta (pertuzamab- out since June 2012), and Herceptin. This would be the plan as long as the Her2 neu testing result was positive. Prior to calling me, she had spoken to Dr. A. I mentioned to her that I felt like he did not want me to be his patient anymore. She said he was taking notes and seemed to be on-board with the plan. I thanked her for calling, and I believed at that point I would be receiving my treatment in Wilmington.

Dr. A. called me the next day. During our conversation he asked what treatment Dr. R had recommended. I told him and found it odd that he would ask since Dr. R. had told me she had spoken with him. He asked about the Her 2 neu test.

I then said, “This is really starting to make me mad. Why hasn’t this been done?”

He said he would talk to his nurse and get back to me.

At this moment in time, I began to think that the relationship I had with Dr. A. was not a good one. I went over the events that had occurred in my mind. My biopsy was done on April 4^th. I got the call Thursday April 5th from Dr. A. that he wanted to send me to Chapel Hill. The slides from the biopsy had been sent to Chapel Hill on the 12^th along with my medical records and scans. I learned I was stage IV on the 15^th from Dr. R. It was now the 17^th. Even though Dr. A. had decided he wanted me to go to Chapel Hill, it seemed to me since I had been his patient for three years that he should have completed the necessary steps to make sure all the information about the cancer was available so treatment could begin. But for some reason he had not done it. Plus, why had he not told me the extent of my cancer? Because of this lack of work on my behalf, I called Dr. A.’s nurse and told her I had decided to have my treatments in Chapel Hill.

The next day, I called Chapel Hill and spoke to Ms. B, the nurse navigator. She would become my contact person for anything I needed medically. I told her I had decided to have my treatments in Chapel Hill. She told me that Dr. R. had been quite flabbergasted that Dr. A. had not ordered the Her2 neu test. As the conversation ended, she said she would set-up my next appointment as well as my first infusion. When it was scheduled, she would call me with the date and time.

And, so it begins . . .