Mom had her MRI of her spine, pelvis, and left leg on Thursday May 29, 2014. I was sitting at Westminster charting when Carly called me with the results. Dr. Mantravadi, the radiation oncologist, had been able to access them because of her appointment on Friday. She said there was concern that the cancer was causing spinal cord compromise and this was very serious. Dr. Mantravadi wanted to start her on Decadron to decrease the swelling. Carly said he may decide to start radiation to this area tomorrow and she would need it daily. I said she couldn't have radiation daily in Ft. Wayne because she was set to start chemo on Tuesday in Muncie. I don't remember the exact details of what we discussed but I knew I as growing increasingly frustrated. Carly kept saying how serious it was and asking what we were going to do. We? I said, "I don't know what we're going to do Carly, I'm not the oncologist, they have to decide this." It seems so simple now, we just wait to see what the doctors say but somehow in our phone conversation it became so complex. I started crying. I didn't know what to do. I didn't understand what Carly wanted me to do. We just had to wait.
I got off the phone and Dr. Mares' office called to tell me they had seen the results too and he wanted to start Decadron. I told them Dr. Mantravadi had already called it in. I was getting frustrated. Now there were three doctors involved looking at these same results. I was worried it was going to result in confusion and possibly a mistake. I texted Mom to tell her about the medication, but she didn't respond. Carly had tried to call her and she hadn't responded either. Where was she?
I couldn't get ahold of her the rest of the afternoon and had finally decided I would just drive to Muncie to see what was going on. I was getting worried. When I left her a message that I was coming since I couldn't get ahold of her she finally called back. She'd said she'd had a very busy day and was tired. She'd had the MRI, then Dr. Mantravadi's office called to schedule her appointment the next day, then she found out she had to see a surgeon to discuss the port, she did that and then they decided they wanted her to come back for surgery Friday morning to have it placed. She was exhausted. Now she had surgery scheduled in Muncie in the morning for a port placement and then needed to travel an hour to Ft. Wayne to have the radiation consult with Dr. Mantravadi. It was going to be a very busy day. I decided I needed to take Friday off to take her to all of this, especially if they decided she needed radiation the next day. I had been taking a lot of days off, but I just had to be with her.
The next morning Friday May 30, 2014 we left for Ball Hospital. She had the surgery to have the port placed in her chest. It was pretty simple, we spent more time waiting in pre-op than in surgery and recovery. We were able to leave about 10 AM.
We drove up to Ft. Wayne and met Carly at the office which was connected to the hospital. We waited awhile and were then taken back to his office. A nurse came in and went through Mom's health history. We had been through this so many times this month. After she left we were left in the office for awhile. Carly again starting asking about the what ifs. I was immediately frustrated. Why can't we just wait to see what he says? I felt like she was drilling out questions we didn't have answers to. I'd never seen her so intense. Carly wanted her to have radiation immediately in Ft. Wayne. I wanted her to go back to Muncie and start chemo on Tuesday. Everything was already all set up. I thought couldn't she get radiation in Muncie too? I knew Carly was thinking she could just have chemo in Ft. Wayne. I said, "She needs chemo in Muncie, Carly." Carly looked at me incredulously. "Why?" she snapped. I was unable to express my thoughts in a coherent manner. I was too full of emotion. I knew I couldn't defend my reasoning to Carly. I burst into tears, got up and said that they could figure out what they wanted to do, but I was leaving and I walked out of the room. I heard my Mom say, "Danielle...."
I left the room and tried to leave the office, but I couldn't find my way out. I was so frustrated. How do I get out of this darn office? I came upon the desk with all the staff looking at me crying. They asked me if everything was okay. I said I just needed to get out and they showed me the way.
I walked out not sure where I was going to go. I didn't know my way around. I finally went outside and sat on a bench. I was angry. I yelled at Carly even though she wasn't there. "She's my Mom! She's not your Mom! She's my Mom!" and I pointed to my chest. "You're not taking her away from me, you're not! She's my Mom, go take care of your own Mom!"
The truth is, I didn't want her to have radiation and chemo in Ft. Wayne because it was too far away from me. Ft. Wayne was a 2 hour drive and Mom already lived an hour away from me. I needed her to be as close as possible. She was going to die and I needed her to be as close as possible while she was still here. Everything was already set up in Muncie, Aunt Pat was coming to town, why did Carly want to change everything?
I know Carly just wanted what was best. She wanted her to be close to her, with doctors she knew and trusted to care for my Mom. Carly, my sister-in-law, had been in my life for almost 15 years now. She's one of my best friends, I am so fortunate to have her in my family. She was my matron of honor in my wedding. Everyone who knows Carly knows that she is one of the sweetest, kindest people. I had never seen this side of her, this intensity and persistence. She knew what she thought was best and she wasn't going to let up. I envisioned that appointment Carly and Caitlyn had had with the pediatric neurologist when Caitlyn was diagnosed with spinal muscular atrophy at 6 months old. I envisioned how she must've reacted when he told her that her beautiful perfect little girl was dying and there was nothing anyone could do about it. I imagine that Carly must've attacked him with a similar intensity that she had now, how she must've told him that that was an unacceptable answer. I do not know what was said at that appointment other than the neurologist finally not so eloquently said, "Don't shoot the messenger." Carly acted that way out of a mother's love and now she was acting out of a daughter's love, the same love I had for my Mom, just with different plans.
They finally came out of the appointment. I didn't look at Carly. She said they decided not to start radiation at this time. I think I said, "Hmm, imagine that. It's good to know what the doctor thinks." I still don't really know what was discussed at the appointment but I think Mom told him her pain wasn't that bad when it really was, so based on her answer he said she could put it off for now. She could have chemo first.
We went back to the hotel and Mom rested for awhile. I think I fell asleep too. Carly texted apologizing. I hope I apologized too. Carly and my nephew Graison later came over to the hotel and we all went to Pizza Hut. My brother Ryan didn't come. I wonder if he was frustrated with Mom. After all the emotions of the day, for once we had a meal where we didn't talk about cancer.
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