I drove and we dropped Mom off at the entrance so she didn't have to walk and Carly and I parked the car. The waiting room was large and very nice. I remember looking around at the patients waiting and thinking "My Mom doesn't look like any of these people. These people look so sick." They were frail, many bald, and they just looked tired. I remember wondering if I was getting a glimpse of the future. I know it was because two months later I was in that same waiting room looking around and my Mom looked just like those people.
We were taken back to the exam room and a nurse came in and took some info. Eventually Dr. Brown came in and we got down to business. This is the appointment we had been waiting for for almost a month now. What was the plan? What was going to happen?
I only remember the order of what we discussed because I still have my scrap paper from that appointment. She reviewed that in addition to the lung cancer she had metastasis to her L2 vertebrae, pelvic bones, and L rib. She asked if my Mom was having pain anywhere else and my Mom said her left leg really hurt. The doctor thought that was strange because nothing had showed up on the PET scan there. She was to have an MRI the next day of her spine due to concern about the cancer in the L2 area so Dr. Brown extended the MRI to include her left hip and femur as well.
She would receive two chemotherapy drugs, carboplatin and etoposide. I knew this. I knew there wasn't much of a choice because there hadn't been any advancement in small cell lung cancer for 15 years according to the Lungevity website. It wasn't for lack of effort, but nothing was working. There had been no big drug breakthroughs. The real advancement was in the treatment of non small cell lung cancer, that's where the hope was. Small cell lung cancer was fast and vicious and scoffed at the drugs.
She talked about the potential to be in a clinical trial...meaning experimental drug therapy. It may help her more than the standard therapy or it may not. There was no way to know, it was research.
Dr. Brown discussed how my Mom's chemotherapy cycles would work. A cycle of chemo for her would be 3 days. On Tuesday she would receive carboplatin and etoposide. She would be there for approximately 4-5 hours. Etoposide was strong so she would also receive it on Wednesday and Thursday to spread out the dose. On Friday she would come in for a Neulasta injection to boost her white blood cells as the chemo would deplete them. She would then have 2 weeks off before coming back in for the next cycle to give her body a chance to recover. Dr. Brown wanted her to receive 4-6 cycles of this depending on how her body responded. After 2 cycles they would re-image to see what the cancer was doing.
Carly, a radiation therapist, brought up radiation. She wanted my Mom to be seen by the radiation oncologist in Ft. Wayne that she worked with and trusted. She wanted to see if radiation would be beneficial at all and at what point would she need prophylactic cranial irradiation. Dr. Brown said that was fine and they could go ahead and arrange the consult wherever Mom wanted.
She went on to tell her the fatigue usually hits 2 days after the cycle is finished, then the nausea would come as well. She would need to have a port implanted in her chest that they they would use as the intravenous access to draw blood and give her the chemo. Dr. Brown looked at me seeing that I was pregnant and said she wouldn't be allowed to be around any children who had live vaccines for 30 days. That scared me a little as I couldn't remember when the live vaccines were given. She had precious time left and I wanted her to be able to spend it with her grandchildren. She told her to call her right away if she felt like she was getting sick. Any illness would be a threat to her because she would be immunocompromised. Finally she told her she would lose her hair 2 to 3 weeks after starting chemo.
I can't remember if she asked her if she wanted to know the next part or if she just told her but she broached the topic of prognosis. What is the likely outcome of all of this? We all sat up a little straighter. She told her without any treatment at all, she would likely die in 2 to 3 months. She told her with treatment, with chemotherapy, she should expect to live 9-12 more months. My Mom, enthusiastic up until this point, sunk down. She looked defeated.
Dr. Brown stepped out at that point to talk to the clinical trial coordinator to see if my Mom would be a candidate. When she left the room, my Mom looked at us and said, "Nine to twelve months? Is there even any point to all of this?" All I can remember answering is, "You need to meet Lydia." More was said to encourage her, but I don't recall anything other than that.
Dr. Brown came in and said if she were to participate in the clinical trial she couldn't have any radiation. We declined at that point, we wanted the option to have radiation if and when she needed it. It made me wonder if this was one of the reasons research into SCLC had been so slow. The patients and the families are too fearful to deviate from the standard of care. There wasn't any time to dabble in experiments. Sad, but probably true.
At some point in all of this, Dr. Brown asked her who would be caring for her. She didn't even phrase it as if caring for herself was an option. We all looked at each other. This was something we had discussed, but mainly behind Mom's back. She thought she could live alone. The possibility was discussed of her moving near Ryan and Carly and having treatment in Ft. Wayne. Ryan stayed at home with the boys, he could be there for her maybe. I cannot tell you how it devastates me that I would not be able to care for my Mother. I had to work full time. I couldn't put this on Spencer who at that time worked one day a week and would have a newborn and a 2 year old to care for. Dr. Brown emphasized we had to figure something out. Aunt Pat had talked of coming at some point. Chemo was scheduled to start on Tuesday, less than a week away. We needed Aunt Pat to come now. It would give us more time to figure something out.
It was a long appointment, over an hour, but my Mom left with her head held high. She said, "Well I plan to live a lot longer than that!" She said it with such confidence we truly believed her. She refused to let us pick her up at the door, she wanted to walk to the car. She said she was able.
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About a month ago I pulled out my Mom's 2014 calendar to help me write this blog. Calendars were her diaries. She wrote everything down. As a child and later even as an adult I would come home and look at my Mom's calendar. It gave me a glimpse into her life, what did she have planned, what had she done, what was coming up, sometimes even how she felt. Her calendar and her refrigerator, those were the two places I always went to. I needed to have something to eat while I nosed through her business. She wrote down important things in red. I flipped to December of her 2014 calendar and saw that on this day she went home and wrote this:
Her beautiful handwriting was already becoming shaky, but it says "5/28/14 Please Lord let me still be here for 2015."
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