The Journey Begins…

On Wednesday 7/8/2020 at 11 a.m., I had a CT with contrast on my head/neck area which the ENT doctor had ordered to figure out my numb chin. Then at 4pm, the phone rang and it was the doctor asking, “Is this a good time to talk?”, which I knew was not a good sign. He told me that he got the results back of my scan and that it was not good. Then he explained that I had numerous metastatic lesions in my brain, in my skull, at the base of my skull, C1-C2 spine, and possible something in the subcutaneous layer of skin on my right posterior shoulder. In between my hysterics, he told me that I need to see my Oncologist at Stanford ASAP and to let him know if I needed help with that.

So just like that…I was told that I have Stage IV Metastatic Breast Cancer.

I obviously hung up the phone and was crying hysterically to Mark who has been working from home. All of these thoughts were going through my mind: OMG what will Mark do, I won’t be here to see all of my wonderful nieces grow up, graduate and get married, what the hell am I going to do, how long will I live…

What sucked was that Mark and me live in CA and my family in PA and NJ so I couldn’t just get in my car and drive over. Not sure who to call, if anyone, since my family lives back east and it was late there, I called my sister, Stacey. All that I know is she answered the phone and I told her what was going on followed by a bunch of, “What am I going to do?”. She calmed me down and we decided to wait and tell my mom the next day and that she would also call my brother, Mike, and tell him what was going on. At the time, my sister was in PA and my mom and brother in NJ so they decided they would drive to my mom’s house on Thursday to be there for her when I told her the news. This I am forever thankful for! My next call was to Dr. Kate Horst (whom I have worked with for 2 years and we’ve remained in touch ever since) and also did my breast radiation. Her husband Dr. Fred Dirbas also did my surgery (whom I also went on and worked for). I filled her in with everything and asked if she would be my radiation doctor again and she said, “Yes, of course”. It is so nice to know that she is going to be involved in my care.

Thursday 7/9/20 my sister and brother arrived at my mom’s house and I did it, I told her the news. It really didn’t go as bad as I thought. I went through what I knew with her and told her that I’d be having a video appointment with my Oncologist at 3:40pm and I’d call her later or tomorrow.

Friday 7/10/20 at 3:40pm video call with my Oncologist at Stanford… The first thing that she said was, “Wow I was not expecting this”. I asked her if she could go through the scan with me and tell me what she knows at this time. She confirmed that I have numerous lesions in my brain that have inflammation around them, a spot or 2 on my scalp, a tumor at the base of my skull, C1-C2 spine and possibly more, swollen cervical lymph nodes, and the mass on my right posterior shoulder. She asked me if I could feel the mass on my shoulder and if I thought it would be easy to remove in the office and I told her “yes”. She then told me that Kate had been in touch with her about my case and she was going to see if her husband, Fred, would remove the mass on my shoulder so that we could re-test for tumor markers to make sure they have not changed. I told her that I’d be talking to Kate again and that I would ask her. We talked about other symptoms, such as my breathing. I have been so winded and short of breath and it has gotten worse over the last 2 months. I also get winded when I am talking to someone and it is very concerning to me. Also, over the past 2 months my symptoms have gotten worse, nausea, loss of appetite, dizziness, fatigue and overall exhausted, headaches and the SOB. She informed me that these are all symptoms from the cancer and she put me on Dexamethasone/steroid to help with my symptoms and inflammation.

Next steps are a brain MRI with contrast, total spine MRI with contrast and PET/CT. She would like the brain MRI done first so that I can get started with brain radiation. Then the lump removed on my shoulder and a PORT placed which is placed into a vein in your chest that goes directly to your heart and can stay there for a long time. They can draw blood, give IV contrast and I will be getting monthly Zometa for my bone mets. That’s what I know so far and pardon my medical terminology I cannot help myself being a nurse but I will try to put in in easier terms for everyone!

Schedule this week 7/13 as of now:

Tuesday 7/14 Brain MRI @ 1pm

Thursday 7/16 PET/CT @ 12:30

Monday 7/20 Spine MRI @ 2pm