Trying To Feel Normal Again

Saturday Nov 19^{th -} I woke up on Saturday morning at 8 AM to a call from Allison. I was amazed that I had slept a full night. I had not slept very well at all the previous week. I did take an over-the-counter sleeping pill, but was still not sure if I would sleep, so that was quite a relief. I knew I wanted to tell each of my children about the cancer, so this was a good time to tell Allison. Plus I was feeling quite positive. This was the first time that I said the two words of “breast cancer” together. The conversation went well. Allison had been disappointed that she didn’t get a part in a play that she really wanted, and now we both were happy she would be available to come to California to work remote and help me out. I was in such a positive mood, and I am sure that helped. The truth is that the prognosis is quite positive for me. I shared with her my week in details and what I went through. That felt good.

After the call with her, I was ready to tell my other two children, but we had Weight Watchers to go to. I am trying to keep up my normal things in life as best I can, plus it was important that I stay as healthy as possible. We went to our meeting, and I was pleased that I now have lost just over 40 pounds. I know this will help with what is ahead of me. My blood pressure is low, and the exercise I have been doing will only help during the surgery and recovery. The class leader saw me, and since she thought I would not be there due to my previously planned trip to London, she went out of her way to say hello. So I told her I cancelled my trip and that I had breast cancer. There, I had said it out loud again. “Breast cancer.” For some reason this was hard for me to say.

When we got home I was anxious to tell my other two children. I tried to call Rachelle next since Allison lives downstairs from her, and then they would both know. But Rachelle didn’t answer. So I called Kevin and Kelli. They were so kind and loving. They said that it is a good thing they hadn’t bought their airline tickets to Utah for Christmas yet. They could then come to California instead, if needed. Plus Kelli mentioned that Kevin is in a great situation to be able to come out and help anytime. We had a nice conversation and I was still in a very positive mode. Then Rachelle called me back, and I was able to tell her. I gave her guidance on how to tell the kids, and asked her to let me know when they knew. The binder and book on Breast Cancer that the nurse navigator gave me had great advice on how to do this
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I felt like the next person I needed to tell was my brother David, who is a doctor at Stanford. He, of course, was encouraging and asked if I would mind if he looked into the surgeon I had selected. I was happy to have some advice and direction from him. He got back to me in just a few minutes. By great good fortune, Doctor Smolik, who shares the office with him, is a breast surgeon! I knew this at one time, but I had forgotten. She offered to take care of me, but she does not take insurance. She said that if she were in my situation and needed care, that she would see Doctor Ching of PAMF. This was the other name that my nurse navigator thought highly of, and she was closer to my home in Sunnyvale. After thinking about it, I decided that I should try to get into see her. I was hoping I could do this early in the week. Then if I wanted a second opinion, I could still see Doctor Wheeler on Thursday as already planned. Dr. Smolik called Dr. Ching on Sunday and told her about me. David told me that Dr Ching would be happy to meet me and treat me, and that she would get me in ASAP.

My emotions were totally up and down all weekend. But it was far better than the previous weekend. I felt exhausted and at times overwhelmed. The literature the nurse navigator gave me to read was very helpful. I still felt very private about sharing the news with people, but I decided to tell both of my sisters-in-law. They were very supportive, and it was wonderful to talk to them.

From all the information we have, this is curable and definitely not the worst case. Logically I feel positive. I know there still could be more surgery and treatment if they find that the cancer has spread more than what we know from the scans. We are still waiting for more results from the first biopsy and results from the second one. The best way to explain my feelings at that time is that I felt unsettled and out of control. I didn’t want to leave the house or do much of anything. I would try to take a nap, but couldn’t fall asleep. Saturday night we decided to go out for a steak dinner. Within five minutes of being in the restaurant I felt this frantic need inside me to just get up and leave. I held that at bay, but was glad when dinner was over. It felt good to get back home. I had a hard time concentrating on anything. Hallmark Christmas movies have started up, and they saved me. They gave me something that could keep my mind somewhat occupied and yet not have to totally concentrate on.

At church I was quiet. It felt good to sit there and hold Mitch’s hand. I didn’t feel like telling anyone about it yet. When church was over I did tell my ministering sister. She is a nurse and is such a sweet person. Back at home, I needed to complete a few papers for my appointment on Monday with the Genetic Counselor. That took some time. My brother David was able to help me with a few things about family health that I was not aware of.

I was happy to have my appointment at 8 AM on Monday the 18^th of November with Caroline Ghiossi in Genetic Counseling. I had to arrive at 7:45 AM. The place was pretty empty. Caroline came out and called me to walk to her office with her. As we arrived in her office, she closed the door, gave me the kindest look, and said “This is all very new to you isn’t it?”  I said, “Yes, I just found out on Friday”. But honestly it felt much longer. I don’t know why time feels like it goes by so slowly. She asked a lot of questions from the information I had provided. She was surprised I knew so much about my family history. I told her that I had to double-check some death certificates and that I do Geneology as a hobby. I also shared the results I had from some Family History DNA testing that provide health-related reports. But those don’t test enough of the genes that we are interested in. She felt that it would be helpful to have a full report, and said that most likely insurance will cover it in my case, given the information we had on cousins and parents. So off I went to get my blood drawn.

After my appointment, I went in to work. I was hesitant to go in, since so many people knew that I was supposed to be in London, and they would be surprised to see me. But I felt that I had sat around the house so much over the weekend that going in to work would be good. I was able to concentrate and get some things done for a while. I went to lunch with Charlotte, my friend at work. It was good to talk to her. She has gone through some medical and work-related things herself. I stayed in the office until about 3:30 PM. There were a couple of people who work near me who were sick, and I didn’t want to get sick.

Mitch went with me on Tuesday the 19^th to meet with the breast surgeon, Dr Denise Ching. I was quite nervous. We arrived early for the appointment and it took a long time before they called us back. I found myself unable to concentrate on any of the reading from my binder. I watched each person as they came in for their appointment. I wondered what their story was. Finally they called us back. The nurse did the basics of weight, blood pressure, etc. Then the doctor came in and talked to us. She apologized for being late, and explained that she had been trying to contact the radiologist to fix some notations on the mammogram that were labeled incorrectly.

She talked to us, and as she explained the process of how and where cancer grows, she drew diagrams on sheets of paper. She had a way of explaining things that really helped me to understand it better. She answered a lot of our questions.

She had an assistant with her and asked if I minded if she helped with the exam. It was fine. Dr. Ching gave me a gown to change into. When she came back she did a complete exam. Then the assistant did an exam.

Dr. Ching then explained my options for minimal reconstruction. One was to do nothing, of course. Another was to put something in the place of the lump so there wouldn’t be a “divot”. But it would still not look quite right. In my case, she recommended that the best way to get me even and also save me from back pain and other issues was to do a breast reduction. She said insurance covers this as it is seen as a medical necessity. It would involve a plastic surgeon, which means it will take more effort to get it scheduled since we will be working with their schedule too. She said the decision didn’t need to be made at that time, and I could think about it for a few days.

This appointment with Dr. Ching was scheduled for 10:45 AM. We didn’t leave the office until 1:30 PM. She spent so much time with us! It felt so wonderful to have met the surgeon and really feel that I can trust her. I felt like she cared and that I was not just another name. Even though we had a connection, I felt that she treats all her patients that way.

By this time I was quite sure I was going to cancel the appointment with the other surgeon, but decided to sleep on it. Dr. Ching suggested that I get my pre-op done before I left for Utah. She felt that the trip would be good for me. But she also warned me to do my best to not get sick as that would cause the surgery to be moved out. She advised me to wear a mask and avoid crowded places and even well-meaning relatives who might be sick. She advised me to have lots of hand sanitizer all around so that everyone would keep their hands germ-free.

Mitch and I were hungry so we stopped by the Fish Market for a late lunch. When we got home I tried to set up the pre-op appointment, but I wasn’t able to do it online. So I made a call and waited for them to call back with a time. Again, the waiting is the worst part. And I knew there would be even more waiting for the call to schedule the plastic surgeon appointment.

I was impressed with all the detail in my medical reports. There are so many things that they test for. For example I know I have “Invasive, Ductal Carcinoma” which is “moderately to poorly-differentiated (grade 2-3)”. My Estrogen receptor is positive at 3+. This is good. Progesterone receptor is positive at 3+. I knew this from my first appointment and this was reviewed with me in my appointment with Caroline. On the 18^th Caroline emailed me that my "HeE2 by IHC" results came back equivocal, meaning we don't know if it is positive or negative. We would now wait for the "Her2 by FISH" results to come back. Depending on those results there may be different treatments. This is all a bit over my head. I am sure as I meet with the oncologist that he will explain this again. There are many different treatment options that would be recommended depending on the various combinations of test results and analysis of the tumor after removal. 

On Wednesday, November 20^th I was able to get my pre-op appointment done with Dr. Prodromou. It went well. My BP was good at 106/72. They did an EKG and then sent me to get a chest x-ray. Dr. Prodromou recommended that I get some compression stockings because of the history of swelling on my right leg. I picked those up after the appointment.

I find myself just wanting more and more information. I really wished that I could have seen the oncologist and/or the Plastic Surgeon on Thursday before we left for Utah. I still feel this strong need to get everything lined up. At this time I was feeling calmer about it all. But I thought I was also coming down with a little bug -- scratchy throat and a bit stuffed up. So getting packed for the trip and getting my rest will be the best medicine. And of course not catching anything else along the way.