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.
Saturday, May 30, 2015
Thursday, May 28, 2015
Oncologist
On Wednesday May 28, 2014 I took the afternoon off and drove to Muncie to go with my Mom to her first oncologist appointment. Carly drove down from Roanoke to come too. Her appointment was with Dr. Brown at the The Cancer Center at Ball Memorial Hospital.
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.
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."
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.
~~~~~~~~~~~~~~
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."
Tuesday, May 26, 2015
Memorial Day Weekend 2014
For Memorial Day weekend we had planned to visit Aunt Pat in eastern Ohio. It was a tradition we had started 2 years prior when Aunt Pat had moved back from Florida. Aunt Pat is my Mom's best friend, they have been friends long before I was born.
The first year Amelia was almost 2 months old, it was her first time meeting Aunt Pat.
The first year Amelia was almost 2 months old, it was her first time meeting Aunt Pat.
The second year Amelia was about 14 months, she said her first word "kitty" on this trip.
We decided to cancel the trip. It's a 5 hour drive and Mom was too sick. We decided to spend the weekend at Ryan and Carly's in Roanoke instead. The weekend mostly all blurs together, but Mom, Amelia, and I got a hotel room in Fort Wayne.
I remember on the trip up asking her if she was tired of talking about cancer. It seemed all conversations revolved around the Big C (as my Mom called it) now. Even when conversations drifted away from this, the Big C still had its overwhelming presence every where we went. Everything was about cancer now.
Saturday evening, Carly brought Graison and Lucas over to swim in the hotel pool with Amelia. I remember when we got back to the room Mom was talking to Teal on the phone. She was happy. She was always in good spirits in the beginning.
On Sunday morning, Carly and I took the kids to a park. Mom stayed behind. In fact, she was still in bed when I left that morning. Whenever we went to hotels up until now Mom had always been the first one up. She never slept in. I remember putting pillows over my face to keep out the light so I could sleep. It was very unnerving to me to see my Mom still in bed after I got up. Reversing roles with your parent is extremely difficult as I'm sure many people can attest to. I asked her if she wanted anything for breakfast. She wanted tea and toast. That's what she mainly ate now. We went to the park while she rested some more. Apparently I only took pictures of Lucas.
We went to McDonald's afterwards picking up a fish sandwich for Mom. We picked up Mom and took her back to Ryan and Carly's. The rest of the day and on Monday the kids played outside. I'm not really sure why I have so few pictures.
On Memorial Day an old family friend Dr. Joe Songer called my Mom. He was a retired oncologist and now the medical director for Ball's hospice program. He very kindly called to give her whatever information she needed and answer any questions. She put me on the phone. He gave me a lot of information, I have trouble recollecting all he told me. I know he said small cell lung cancer usually travels to either the adrenal glands, bones, liver, or brain. Adrenal glands were best, liver and brain worse, Mom with her mets to bone was in the middle. He described the chemo drugs she would likely receive and kept referring to cycles. This was all new to me as I had little experience in cancer treatment. I wish I could recollect more of what we talked about. I wish I could've, but because Mom was standing there I didn't ask the hard questions. How bad do you really think this is? How long does she have? How will this change her?
We headed back home that evening. I believe it was this trip I broached some questions about what she would want for her final arrangements. She said, "Do we really need to talk about this now?" She didn't say it in an exasperated way but more that she didn't believe this was something she was going to have to worry about for a long time. I said I just wanted to know, it was good to know, everyone healthy or sick should have these conversations. She was silent for awhile before finally saying I think I want to be cremated, Gardens of Memory can handle arrangements, and I want It Is Well With My Soul played. She said that's all she could come up with right now.
Overall though, Mom did really well that weekend. It was a wonderful family weekend as she recorded on her calendar.
Friday, May 22, 2015
The Results Are In
On Wednesday May 14, 2014 Dr. Mares called my Mom with the definitive results of her lung biopsy. She didn't answer the phone. I was seeing patients at Westminster Village and when I came back to my phone I saw I had a voicemail from her. She said Dr. Mares had called to tell her the results, but she thought it would be better if he told them to me. She thought I would be able to understand them better. What she didn't say, but what I knew, was that she was scared. I called him and he told me what he had presumed before was true. This was small cell lung cancer. The PET scan would show if it had spread. If it was only confined to the one lobe of her lung it would be considered "limited" stage small cell lung cancer. If it had moved beyond that it would be considered "extensive." Those are the two stages of small cell lung cancer.
It didn't really matter to me at that point which it was, limited or extensive. I already thought she had extensive, but the prognosis for limited was not really much better. From UpToDate:
Prognosis — The most important prognostic factor in patients with SCLC is the extent of disease (stage) at presentation. For patients with limited stage disease, median survivals range from 15 to 20 months, and the reported five-year survival rate is 10 to 13 percent. In contrast, for patients with extended stage disease, the median survival is 8 to 13 months, and the five-year survival rate is 1 to 2 percent.
Both terrible, both described in months not years.
She had her PET scan on May 15. A week passed and she still did not hear the results. I thought that was a little strange, I knew the results had to be back, but I didn't push. I knew what they would be anyway. She had the MRI of her brain to check for spread there on May 21. She thought maybe they were waiting to get both test results back before calling. Fortunately on Thursday May 22 my friend Kristina was at work and happened to ask Dr. Mares about when the results would come. He asked her when my Mom had had the test done. The results had been back, but they'd slipped through the cracks and no one had notified him.
I was sitting on my bed at 7 PM on that Thursday when my phone lit up with Dr. Mares on the ID. I was surprised because of the late hour that he was calling. I ran downstairs, grabbed a pen and paper and went to the garage because I knew it would be quiet there. He told me that the cancer had spread to several places in her bones. I knew it. My heart rate didn't increase by one beat, this news was no surprise to me. I asked him exactly where it had spread and he emphasized the word several places again. Looking at the results now I see what he meant:
Multiple hypermetabolic bony metastases are identified, occurring within the left pubic bone, right medial ilium, left iliac wing, the L2 vertebral body. There is a fracture of the left lateral sixth rib with associated hypermetabolism and lucency within the involved bone, suggestive of a pathologic fracture. Of note, the L2 vertebral bony metastasis destroys the posterior cortex of the vertebral body, however, evaluation for central canal invasion is limited on noncontrast CT.
Her rib was fractured. This startled me a bit. She had complained to me of rib pain what, 2 or 3 months ago? I had told her it was inflammation from coughing. Sigh, I'm sorry Mom.
I asked him about the brain MRI results. He said he would get back to me with the results. He wanted her to have an MRI of her spine due to concern of spinal cord compromise. He apologized for the delay in the test results and then assured me they would be praying for her.
I called and gave her the results. She did not act surprised either.
I received a text from Dr. Mares. Her brain MRI was negative. I was happy, but not as happy as I should've been. It was only later that I realized from reading articles and other people's stories how bad it would've been if it would've been in her brain too, how imminent death would've been. She would've needed brain radiation and I've read the side effects can mimic dementia. I believe she would've also have needed to wear a mask during radiation and I know that would've terrified her, absolutely terrified her.
I sent her this text. A Sexton always maintains humor.
It didn't really matter to me at that point which it was, limited or extensive. I already thought she had extensive, but the prognosis for limited was not really much better. From UpToDate:
Prognosis — The most important prognostic factor in patients with SCLC is the extent of disease (stage) at presentation. For patients with limited stage disease, median survivals range from 15 to 20 months, and the reported five-year survival rate is 10 to 13 percent. In contrast, for patients with extended stage disease, the median survival is 8 to 13 months, and the five-year survival rate is 1 to 2 percent.
Both terrible, both described in months not years.
She had her PET scan on May 15. A week passed and she still did not hear the results. I thought that was a little strange, I knew the results had to be back, but I didn't push. I knew what they would be anyway. She had the MRI of her brain to check for spread there on May 21. She thought maybe they were waiting to get both test results back before calling. Fortunately on Thursday May 22 my friend Kristina was at work and happened to ask Dr. Mares about when the results would come. He asked her when my Mom had had the test done. The results had been back, but they'd slipped through the cracks and no one had notified him.
I was sitting on my bed at 7 PM on that Thursday when my phone lit up with Dr. Mares on the ID. I was surprised because of the late hour that he was calling. I ran downstairs, grabbed a pen and paper and went to the garage because I knew it would be quiet there. He told me that the cancer had spread to several places in her bones. I knew it. My heart rate didn't increase by one beat, this news was no surprise to me. I asked him exactly where it had spread and he emphasized the word several places again. Looking at the results now I see what he meant:
Multiple hypermetabolic bony metastases are identified, occurring within the left pubic bone, right medial ilium, left iliac wing, the L2 vertebral body. There is a fracture of the left lateral sixth rib with associated hypermetabolism and lucency within the involved bone, suggestive of a pathologic fracture. Of note, the L2 vertebral bony metastasis destroys the posterior cortex of the vertebral body, however, evaluation for central canal invasion is limited on noncontrast CT.
Her rib was fractured. This startled me a bit. She had complained to me of rib pain what, 2 or 3 months ago? I had told her it was inflammation from coughing. Sigh, I'm sorry Mom.
I asked him about the brain MRI results. He said he would get back to me with the results. He wanted her to have an MRI of her spine due to concern of spinal cord compromise. He apologized for the delay in the test results and then assured me they would be praying for her.
I called and gave her the results. She did not act surprised either.
I received a text from Dr. Mares. Her brain MRI was negative. I was happy, but not as happy as I should've been. It was only later that I realized from reading articles and other people's stories how bad it would've been if it would've been in her brain too, how imminent death would've been. She would've needed brain radiation and I've read the side effects can mimic dementia. I believe she would've also have needed to wear a mask during radiation and I know that would've terrified her, absolutely terrified her.
I sent her this text. A Sexton always maintains humor.
Monday, May 18, 2015
It's Not Just In Her Lungs
Before starting with this post I want to clarify my Mother's Day post. Something has been bothering me as I've been rereading it. I want people to know we didn't just decide to do chemo to simply extend her life. Yes, I wanted her to meet Lydia but I think having her undergo chemo simply to give us a few more months with her would've be selfish. Or maybe not, but that decision would've been up to her if that was the case. Her tumor was very large, the size of a baseball. I do not even want to imagine the kind of pain and suffering my Mom would've have had to go through if we just continued to let it grow...and it was growing quickly. I think the tumor would've suffocated her. She would've had a horrible death. The chemo didn't save her life, but it gave her a better death.
~~~~~~~~~~
The weekend after Mother's Day I invited her to come to stay with us in Noblesville. From this point on, I was never going to let my Mom spend another weekend alone in her apartment. It was bad enough I had to be an hour away from her during the week to work. Any free time I had was going to be spent with my Mom now. She was hesitant about coming as she had just been here the weekend before, she didn't want to intrude. I told her either I'm coming there or she's coming here. She decided to come stay with us. I also insisted on picking her up. That Friday it was raining. As I was getting ready to turn on the interstate, I saw this:
I don't know what meaning to assign to it. I know it's a meteorological phenomenon, but it made me feel like God was saying, "I'm here."
That Saturday I sorted clothes in preparation for Lydia's birth. She was due July 1, c-section planned for June 24. Carly and Ryan had given me the last of my niece Caitlyn's clothing. This meant so much to me. I missed my niece so much. I went through the clothing and we reminisced about certain outfits she wore and how she looked so cute. I remember finding this pink vest I had bought for her:
We were saddened at clothes that were sizes past 12 months. We knew she was never able to wear those clothes. She had died at 11 months.
I was having trouble because some of the clothes I knew weren't going to work for Lydia. They weren't going to be the right size for the season. I felt like I should keep them all. How could I ever give away anything that had been Caitlyn's? She was gone but we still had her clothes. My Mom assured me it would be ok to donate them. Another child could wear them. We had our memories of her. We didn't have to save everything. They were just clothes. We still had her spirit.
As I was sorting the clothes my Mom sat on the couch with Amelia. Amelia was playing games on my iPhone and my Mom was enjoying the rare opportunity that Amelia was cuddly and sitting still.
Amelia eventually got up and my Mom shifted position. She winced in pain. I asked her what was wrong. She said her left hip was starting to hurt. She asked me why her hip was hurting. I knew immediately there was cancer there. It wasn't just in her lungs, it had spread to her bones. She had had her PET scan on Thursday to check if the cancer had spread to other organs. The results weren't back yet, but I didn't need them. I had expected this, that it wasn't just in her lungs. The cancer was so extensive in her lungs I knew it must've spread beyond that. I didn't want her to have cancer in her bones though. Bone cancer was painful.
I advised her to take some Norco she had left from back pain the previous winter and she did. She only intermittently complained of pain the rest of the weekend, but I talked to my Aunt Pat later. She told me my Mom had told her she was in such excruciating pain it took everything in her to climb our stairs. The pain had come barreling in without warning, just like everything else.
Sunday, May 17, 2015
Dear Mom
Dear Mom,
Today I really missed you. Today was really hard. Not because of anything related to your cancer a year ago, but just because...life is hard. Everything just seems so...loud. Do you know what I mean? Did you ever feel that way?
I have a million things I need to get done, but there's just no time. I'm falling behind at work, in my personal life, just everywhere. There's so many balls I need to keep in the air but I'm a terrible juggler. People tell me...you always told me...just do the best you can Danielle, but I can tell you it's not good enough anymore. I'm always letting someone down. If I make someone happy, someone somewhere else gets let down...because I just can't do it all. I wish you were here to help me. Maybe you could've addressed the invites to Lydia's birthday party or helped me clean up the house. The house is a mess. You always picked up things when you were here. Somehow you knew where they went. Kristina took the girls for a day, thanks goodness for her. You always said I was lucky to have her for a friend. She is like what Aunt Pat was for you. I have good friends, I'm so thankful for that. I wish I could spend more time with them all.
Amelia was diagnosed with a mild language delay last week. Lydia we think has a developmental delay. She'll be one soon (isn't that crazy?) and still won't bear weight, pull up, stand or crawl. She did start to scoot a little this week though so that's promising! First Steps is coming out on the 28th to evaluate her. It's hard not to wonder, are their problems my fault? I know I need to spend more time with them. I know if you were here you would help me. You could play these sequencing games the speech pathologist suggested with Amelia or maybe entice Lydia to move with some toys. Amelia used to love playing with you. You were a great grandma. Parenting is really hard Mom, really, really hard. I always feel like I'm failing. Did you feel that way too? Did you ever feel judged by other parents? Was that a thing when you were raising us? It's a thing now. I know you would say that's silly.
I just wish I could hit pause for awhile...just stop a few moments and relax. I can't though, everything just keeps moving and everything is so, so loud. I know I said that before.
I wish you were here to tell me everything's ok. I know it will be, but I just wish I could hear it from you.
I miss you.
Love,
Danielle
Today I really missed you. Today was really hard. Not because of anything related to your cancer a year ago, but just because...life is hard. Everything just seems so...loud. Do you know what I mean? Did you ever feel that way?
I have a million things I need to get done, but there's just no time. I'm falling behind at work, in my personal life, just everywhere. There's so many balls I need to keep in the air but I'm a terrible juggler. People tell me...you always told me...just do the best you can Danielle, but I can tell you it's not good enough anymore. I'm always letting someone down. If I make someone happy, someone somewhere else gets let down...because I just can't do it all. I wish you were here to help me. Maybe you could've addressed the invites to Lydia's birthday party or helped me clean up the house. The house is a mess. You always picked up things when you were here. Somehow you knew where they went. Kristina took the girls for a day, thanks goodness for her. You always said I was lucky to have her for a friend. She is like what Aunt Pat was for you. I have good friends, I'm so thankful for that. I wish I could spend more time with them all.
Amelia was diagnosed with a mild language delay last week. Lydia we think has a developmental delay. She'll be one soon (isn't that crazy?) and still won't bear weight, pull up, stand or crawl. She did start to scoot a little this week though so that's promising! First Steps is coming out on the 28th to evaluate her. It's hard not to wonder, are their problems my fault? I know I need to spend more time with them. I know if you were here you would help me. You could play these sequencing games the speech pathologist suggested with Amelia or maybe entice Lydia to move with some toys. Amelia used to love playing with you. You were a great grandma. Parenting is really hard Mom, really, really hard. I always feel like I'm failing. Did you feel that way too? Did you ever feel judged by other parents? Was that a thing when you were raising us? It's a thing now. I know you would say that's silly.
I just wish I could hit pause for awhile...just stop a few moments and relax. I can't though, everything just keeps moving and everything is so, so loud. I know I said that before.
I wish you were here to tell me everything's ok. I know it will be, but I just wish I could hear it from you.
I miss you.
Love,
Danielle
Monday, May 11, 2015
Mother's Day Weekend 2014
The day after the bronchoscopy we went to Mother's Day Tea which is put on by the division of Community Health Network I work for, Touchpoint. We've gone to this every year I've worked for Community except one year when I was on call. We both love the event. It's at the Ritz Charles every year and it's just an amazingly wonderful event. The food, the vendors, the speakers...a great time. Last year they had a professional photographer to take photos. I knew even before the photo was taken that this photo would always be special to me.
It's the photo that marks the beginning of her cancer journey and it's the last professional photos of us. It's also the photo I cropped and used for her obituary.
It's amazing how she changed so much from that photo and so quickly.
At the tea we went around and looked at the vendors, it wasn't too long before she said "I think I need to sit down." She was out of breath. We sat down at the table and chatted a bit. Many of the women were wearing fancy hats. She said, "We should do that next year." I smiled and said yes but in my heart I knew there wasn't going to be a next year.
One of the first speakers remarked that it has been noted that women feel the most beautiful when they're pregnant. I can't remember if she'd asked if anyone was pregnant or I think maybe she'd chatted with us before the program, but it was pointed out that I was almost 8 months pregnant. She asked me if that was a true statement and I said yes, I'd never felt more beautiful. My Mom beamed. She later told me she was proud of me for feeling that way, for being confident in myself.
This year they didn't have the Tea. I believe they'd had it for the past six years, but not this year. Somehow that just seems appropriate.
The next day Ryan, Carly, and the boys came down to Noblesville for Mother's Day. The kids were all able to play together, they had a great time.
Carly baked a cake...Graison helped.
And we got a few photos together.
Now this is the hard part. I kind of hope maybe some of you have stopped reading. We started discussing the cancer. My Mom asked Carly and I, "This isn't a death sentence is it?" Carly in her ever cheerful self said no. I didn't say anything at the time, but later I pulled her aside. I don't remember exactly how I said it, but I told her that yes, this was a death sentence. Her condition was terminal, her cancer was very bad. I know this because of reading about how the cancer works, the survival statistics, how the cancer had already affected her, and what the doctors had told me. Her chemotherapy was going to palliative only, to give her a little more time with us.
Most of all, I told her the truth because I wanted her to take advantage of the time she had. I wanted her to live each day to the fullest. She needed to do what she wanted to do, go where she wanted to go, and say what she needed to say now. There would be no later.
I suppose the "Christian" thing to have done would've been to tell her that we would pray for a miracle. God could take this away. But I couldn't tell her that because I didn't believe it. I would be lying. I believe God allowed her to be affected by this cancer and he wasn't taking it away. God is a healer yes, but not always in this earthly world. I will probably address this later, but I believe God knew she needed his ultimate healing and that was to be with him. Despite her appearances and her outside demeanor, my Mom was deeply troubled in her heart. She always has been and God knew it was time to take her home. She had had enough.
Finally, I told my Mom the truth because she looked to me for the plan to fight this cancer. Our plan was to get the treatment, extend her life some, but most importantly to preserve her dignity at all costs. I told her if ever this treatment becomes too tough, if she has to greatly sacrifice her quality of life, it's not worth it. In my line of work I see a lot of people be pushed to the limit with therapy, medications, feeding tubes, hospitalizations until they have no life left in them. And for what? The end result is always the same. I wasn't going to let her take that painful avenue, not my Mom. She was my Mom, she was Patricia Sexton and I wasn't going to let her become a shadow.
Saturday, May 9, 2015
Bronchoscopy
We left for her bronchoscopy early Friday morning, dawn was just breaking. She had spent the night at our house the night before so I could take her to and from the procedure. When we got to St. John's there was hardly anyone there yet. We sat while a very nice woman took down all her information. I remember her remarking that Mom looked really good, she didn't look sick.
They then took her back to get ready for the procedure. I waited out in main hospital waiting room for what felt like forever. I finally nodded off to sleep when a woman came to get me to take me to her. I was taken back to the surgery waiting room. They told me it would be a while, so I went to go get something to eat...eggs, a biscuit, coffee. I got lost on the way back to the waiting room, but someone helped me find the way.
While I waited I texted some people, letting them know the status so far. I remember watching the news and two men had been killed on I-69, two construction workers. I remember thinking wow we just passed that area. They were alive when we drove by and now they're gone. They had families. Life is so short.
Dr. Mares came in not too long after. He took me back to the consultation area. He started talking and I realized I needed to be writing stuff down. He said it was looking like non small cell lung cancer. He said the left lower lobe of her lung was completely occluded and the upper lobe was partially occluded. He said she would need radiation soon. He said she may need chemotherapy too but he didn't believe she was strong enough to tolerate them both at the same time. He emphasized to me that while it might be possible for this cancer to go into remission it was not curable. He said no one we speak to should be using the word "cure." Some people might have taken that as harsh, but I appreciated it. I took it as a maybe a professional courtesy of an MD speaking to myself as an NP that he was telling me the non sugar coated truth. He finished by saying, "Your Mom has a hard road ahead of her." I nodded and expressed thanks for his time.
I went back to my seat and cried for maybe 30 seconds. I collected myself and then sent texts to various people...Ryan, Dad, my coworkers, a couple close friends...not Sean. It bothered me Sean didn't know anything that was going on, but I respected her wishes to not tell him yet. I talked to Carly on the phone.
After a while longer I was taken back to see her in recovery. She was sitting on the gurney and smiled. I sat down. I said, "Have they told you anything yet?" She said no. I said, "It's definitely cancer, they think it's non small cell and you will need radiation." Any hope she had that just maybe this wasn't cancer...maybe it was a giant pocket of infection...was gone. She nodded.
We chatted awhile, I don't remember about what. The nurse was beginning to worry because Mom's blood pressure wouldn't come up. Systolically it was running in the 70s and 80s. They gave her more IV fluids but no change. They gave her a Sprite to drink, no change. We had been there a long time, it was already in the afternoon. I was worried my phone was going to die and I was still on call. Finally they gave her a Pepsi and the caffeine seemed to do the trick. Her blood pressure went up.
I went to go out to the bathroom and saw Dr. Mares in the hall. He was running between patients but he said the pathologist was now thinking it was looking more like small cell lung cancer. I asked if he would be coming to talk to her before she left and he said he would. I went back to the room and updated Mom.
She was allowed to get up and get dressed. She sat next to me in a chair. We perused Better Homes and Gardens magazines. We looked at the delicious food, pretty houses, and flowers.
He finally came to talk to her. He bent down and very sincerely said "So like we talked about this is cancer." He said it was looking more like small cell at this time but we wouldn't know until the final pathology was back. He said if it was the treatment would be chemo. He said she would need an MRI of her brain and a PET scan to see if it had spread anywhere. Their office would set these tests up and let her know. They would refer her to an oncologist in Muncie. Dr. Mares gave me his cell phone number. He said to text or call at any time if we had any questions. What a great man.
I don't remember if it was then or at the appointment with him earlier in the week or maybe even after the bronchoscopy, but I got the impression he wanted it to be small cell lung cancer. This confused me. Small cell is the really bad one, why was he preferring that? I remembered small cell was the bad one because in school I remember thinking small cell would be the good one and non small cell would be bad. Small is better right? But no, it's the opposite. I never asked him, but I asked other colleagues. Apparently non small cell is better if the cancer can be surgically removed, but it does not respond well to chemo or radiation. Small cell responds really well to chemotherapy. Great huh? No. It gets really small and hides and then it comes back quickly bigger and badder than before. I know badder isn't really a word. It's vicious..but with chemotherapy it will back off for a moment...but only a moment. Of course the person has to survive chemo in the first place. The chemo does a great job of destroying the cancer, but it destroys the person too. That's what happened to Mom.
We left and drove back to Noblesville. We got Panera to go and ate at home. It was Mother's Day weekend.
I posted this on Instagram:
They then took her back to get ready for the procedure. I waited out in main hospital waiting room for what felt like forever. I finally nodded off to sleep when a woman came to get me to take me to her. I was taken back to the surgery waiting room. They told me it would be a while, so I went to go get something to eat...eggs, a biscuit, coffee. I got lost on the way back to the waiting room, but someone helped me find the way.
While I waited I texted some people, letting them know the status so far. I remember watching the news and two men had been killed on I-69, two construction workers. I remember thinking wow we just passed that area. They were alive when we drove by and now they're gone. They had families. Life is so short.
Dr. Mares came in not too long after. He took me back to the consultation area. He started talking and I realized I needed to be writing stuff down. He said it was looking like non small cell lung cancer. He said the left lower lobe of her lung was completely occluded and the upper lobe was partially occluded. He said she would need radiation soon. He said she may need chemotherapy too but he didn't believe she was strong enough to tolerate them both at the same time. He emphasized to me that while it might be possible for this cancer to go into remission it was not curable. He said no one we speak to should be using the word "cure." Some people might have taken that as harsh, but I appreciated it. I took it as a maybe a professional courtesy of an MD speaking to myself as an NP that he was telling me the non sugar coated truth. He finished by saying, "Your Mom has a hard road ahead of her." I nodded and expressed thanks for his time.
I went back to my seat and cried for maybe 30 seconds. I collected myself and then sent texts to various people...Ryan, Dad, my coworkers, a couple close friends...not Sean. It bothered me Sean didn't know anything that was going on, but I respected her wishes to not tell him yet. I talked to Carly on the phone.
After a while longer I was taken back to see her in recovery. She was sitting on the gurney and smiled. I sat down. I said, "Have they told you anything yet?" She said no. I said, "It's definitely cancer, they think it's non small cell and you will need radiation." Any hope she had that just maybe this wasn't cancer...maybe it was a giant pocket of infection...was gone. She nodded.
We chatted awhile, I don't remember about what. The nurse was beginning to worry because Mom's blood pressure wouldn't come up. Systolically it was running in the 70s and 80s. They gave her more IV fluids but no change. They gave her a Sprite to drink, no change. We had been there a long time, it was already in the afternoon. I was worried my phone was going to die and I was still on call. Finally they gave her a Pepsi and the caffeine seemed to do the trick. Her blood pressure went up.
I went to go out to the bathroom and saw Dr. Mares in the hall. He was running between patients but he said the pathologist was now thinking it was looking more like small cell lung cancer. I asked if he would be coming to talk to her before she left and he said he would. I went back to the room and updated Mom.
She was allowed to get up and get dressed. She sat next to me in a chair. We perused Better Homes and Gardens magazines. We looked at the delicious food, pretty houses, and flowers.
He finally came to talk to her. He bent down and very sincerely said "So like we talked about this is cancer." He said it was looking more like small cell at this time but we wouldn't know until the final pathology was back. He said if it was the treatment would be chemo. He said she would need an MRI of her brain and a PET scan to see if it had spread anywhere. Their office would set these tests up and let her know. They would refer her to an oncologist in Muncie. Dr. Mares gave me his cell phone number. He said to text or call at any time if we had any questions. What a great man.
I don't remember if it was then or at the appointment with him earlier in the week or maybe even after the bronchoscopy, but I got the impression he wanted it to be small cell lung cancer. This confused me. Small cell is the really bad one, why was he preferring that? I remembered small cell was the bad one because in school I remember thinking small cell would be the good one and non small cell would be bad. Small is better right? But no, it's the opposite. I never asked him, but I asked other colleagues. Apparently non small cell is better if the cancer can be surgically removed, but it does not respond well to chemo or radiation. Small cell responds really well to chemotherapy. Great huh? No. It gets really small and hides and then it comes back quickly bigger and badder than before. I know badder isn't really a word. It's vicious..but with chemotherapy it will back off for a moment...but only a moment. Of course the person has to survive chemo in the first place. The chemo does a great job of destroying the cancer, but it destroys the person too. That's what happened to Mom.
We left and drove back to Noblesville. We got Panera to go and ate at home. It was Mother's Day weekend.
I posted this on Instagram:
And I posted this on Facebook:
Wednesday, May 6, 2015
Pulmonologist
On Tuesday afternoon, I met her at the pulmonologist's office at St. John's in Anderson. She was going to be seeing Dr. Mares. My friend Kristina works in the ICU at St. John's and had spoken of him before. She had said he was very good, very kind, and his patients loved him. Thanks goodness, that's what we needed. I once had a patient at St. Vincent who the cardiothoracic surgeon came in to tell her she had lung cancer. He was very matter of fact and very cold. She began crying and he just kept talking. It was awful.
We were not sad, there were no tears. It was a beautiful day and we were happy to see each other.
She registered at the desk and was given paperwork to fill out. She handed me the packet of information her doctor had given her with the actual CT scan results and some other information. This was the actual CT scan:
We were not sad, there were no tears. It was a beautiful day and we were happy to see each other.
She registered at the desk and was given paperwork to fill out. She handed me the packet of information her doctor had given her with the actual CT scan results and some other information. This was the actual CT scan:
I read it and was shocked. I said, "It says the mass may be as large as 6 cm Mom. That's huge." She was walking around with a tumor the size of a baseball and a collapsed lung and she looked pretty good! She was beginning to feel better since the antibiotics were kicking in on the pneumonia.
We sat there awhile. Kristina had told me we would have to wait awhile, but it would be worth it. The office looked dated and smelled of cigarette smoke. Go figure a pulmonologist's waiting room would smell like cigarette smoke.
She told me yesterday at her doctor's office everyone had hugged her before she left. I said "Did you ask them if they thought you were dying or something?" She laughed. We Sextons take things in stride and usually make jokes that would be considered off color. It's how we cope.
We were finally taken back to the exam room. We waited a bit longer. He finally came in and said he knew my friend Kristina. He said he'd been told he had a very special patient coming in today. He also said he'd seen a lot of pictures of my daughter and she was very cute. Really Kristina?
He did not beat around the bush. He said referring to her CT scan, "This, this is cancer." He said there was a slight chance it could be some huge pocket of infection but he highly doubted it. He then went on to take her history. I was surprised he was the one to do this, a nurse could've done this. But he took her whole history. Let me tell you, Pat Sexton likes to talk. There are no short and simple answers. I felt bad that she kept going on and on, I knew she was telling him more than he needed to know. I wished I could've just answered the questions for her. I was worried we were taking too much of his time. However, he patiently listened to all her answers and was pretty good at redirecting her back to the topic at hand.
He then talked about the treatment. He said there was no possibility of surgically removing it due to its location being pretty much in the center of her chest. She would need either chemotherapy or radiation possibly both depending on if it was non small cell lung cancer or small cell lung cancer. She wanted to know if she would be able to continue to work while undergoing treatment. He said no. She would be too tired and immunocompromised. I'm not sure if she believed him. It turns out, I believe, she went to work the day after this appointment and then never went back. She put on a good show, but she was exhausted.
He said she needed treatment quickly. First, he needed to do a bronchoscopy to biopsy it to find out exactly what it was. This was Tuesday, he said he could do it Friday. She paused and thought about it. I stared at her and finally asked, "What you got a hot date or something Mom?" She said, "Well I'm supposed to work that day!" I said, "Well I think this is a pretty good excuse to call in!" Dr. Mares pointed at me and said, "Looks like she's in charge."
The nurse came in to finalize all the details. The bronchoscopy was scheduled for 7 AM on Friday at St. John's. I forget what time we were supposed to actually be there but it was pretty early.
We left and went to eat at Cracker Barrel. We talked about my pregnancy. We talked about how last time when I was on maternity leave she had made us some frozen meals to eat. I joked she better start preparing those now before she started treatment and was too sick to do so. We laughed. She ate a good meal. She told me her appetite was so much better when she was with me. She paid for dinner. Money had been tight for her and I usually paid for things but she insisted. From that day on, she pretty much paid for everything. We hugged and parted ways, she back to Muncie and me back to Noblesville.
Tuesday, May 5, 2015
CT Scan
This is a difficult post to write.
On May 5, 2014 Mom went to see her doctor in the morning to discuss the CT scan results. She sent me this text:
On May 5, 2014 Mom went to see her doctor in the morning to discuss the CT scan results. She sent me this text:
I was in the Memory Care unit at the Forum seeing patients. I thought it was a little odd that she was being referred to a pulmonologist for pneumonia and emphysema as both of these conditions can be adequately treated by a primary care physician. Maybe it was just a precaution. I also didn't ask how and why they managed to get her into a specialist so quickly. Next day appointments are unheard of. My patients with severe COPD I can't get in for a month or two. Hmm, I thought, must just be easier in a smaller town. I didn't even ask why. All of that should've been a huge red flag, but it didn't faze me.
Around lunch time I had an OB appointment. I was 32 weeks along, baby was fine.
I don't remember who called who after that appointment, but we talked on the phone. She had given the doctor my note about my concerns about her treatment for pneumonia. He gave her a copy of the CT scan report to give to me. She asked if she could fax it to me on our home fax. Our home fax still wasn't working I told her. I was going to Westminster Village to see more patients, I told her to fax it to me there. She hesitated. "No," she said, "I'll just wait until you get home. Call me when you get home." I said ok. I was so cavalier. I'm sure she has a spot on her lung, I thought. Lots of people have "spots." I'm sure they'll just want to watch it. I never once thought it was cancer. After all, she had been told no cancer.
I finished work and I went home. I called her, I got her voicemail. I texted her to call me when she got a chance. She called back pretty quickly. I was eating a hamburger. I sat down at the dining table and used the back side of my OB appointment paper to write down what she told me. She read it to me, and I wrote this:
The report impression actually read, "Findings highly suspicious for malignancy involving the left hilum and left lower lobe resulting in collapse of the left lower lobe and probably post obstructive pneumonia in the left upper lobe. There is also mediastinal and hilar adenopathy."
I stared at what I had written. She had lung cancer. This was lung cancer and it was not early. It was bad.
Cancer, in general, doesn't scare me, but there are three cancers that do...pancreas, liver, lung. I didn't know a lot about lung cancer then, but I knew the 5 year survival statistics were poor. At the time, I didn't even realize how poor they were for small cell lung cancer. The five year survival rate for extensive stage small cell lung cancer is 1-2%. I didn't know that yet. She didn't even tell me the tumor was 6 cm...the size of a baseball.
I will tell you right then I knew my Mom was going to die. I didn't know how soon, but I knew she wasn't going to see my girls grow up. I knew she probably wouldn't even see them reach kindergarten. Call me a pessimist if you must. I prefer the term realist.
I didn't say anything, I couldn't speak. If I spoke, I would start crying. She said, "It doesn't sound very good does it?" I paused trying to hold back tears. Finally, I burst into tears and choked out "No, no it doesn't." She apologized. I knew she was apologizing for being a smoker for all these years. It didn't matter to me. No one deserves cancer. I said quietly, "It's ok." She said she would see me tomorrow and we hung up the phone.
Spencer asked what was wrong. I said, "Mom probably has lung cancer." He disagreed, he brushed it off, "I'm sure she's fine," he said. He didn't understand.
My Mom was going to die.
I put away my food, went upstairs to our bathroom, locked the door, sat down, and sobbed.
Sunday, May 3, 2015
Saturday May 3, 2014
The chest x-ray was on Wednesday. I called her Thursday evening after work to see how she was doing. Her friend Andy picked up her phone. She told me Mom as getting sick in the bathroom. I'm not sure if Andy came because Mom was getting sick or if she was already just there, but I'm so glad she was. She told me my Mom would call me back once she felt a little better. Why was she getting sick? From pneumonia? That's odd. I waited and waited for what seemed like forever. I finally decided I couldn't just stay there. I knew Andy was going to have to go home and I didn't want my Mom to be by herself. I decided I would call in to work on Friday and go take care of my Mom. As I was getting a bag out to pack, she called me. She told me she was feeling much better. She didn't know why she got sick, but she said she was okay. She assured me I didn't need to come.
The next morning I texted her to see if she stayed home from work. I received this text in response:
The next morning I texted her to see if she stayed home from work. I received this text in response:
I went to Muncie to see her on Saturday. We had originally had plans to go to the SMA walk in Ohio that weekend, but I'd canceled when Mom was diagnosed with pneumonia. It was one event in a series of events I had scheduled for us that spring/summer. What I now know were symptoms of her cancer, I thought were symptoms of depression. I thought by spending more time with her, I could get her in a better mood. She needed to be busy, so I had it all planned out. We would start the spring with the Purdue 50th Nursing Celebration, the first weekend of May we would go to the Ohio SMA walk, the next weekend was the Touchpoint Mother's Day Tea, Memorial Day weekend we would go to see Aunt Pat in Ohio. The first weekend of June there was an SMA event at the zoo, the following weekend was the Muncie Symphony on the Green, then my c-section with Lydia was scheduled for June 24. After that I would be on maternity leave and I would have the whole summer to come and visit with Mom. We would finish the summer with our annual trip to St. Joe, Michigan over Labor Day. I would surely be able to improve her mood. I spent a lot of time with my Mom that summer, but very few of those activities got accomplished.
This weekend was especially important that I spend with her because May 3rd would've been my parents' 45th wedding anniversary. My Mom did not forget dates. In fact my brothers and I would joke about a saying she had when we were in trouble. She would say, "I'll remember this." It would send chills down our spines. I knew this day would be difficult for her. I would distract her.
I don't know what all the doctor told her about her CT scan results on Friday, but if he told her there was a possibility of cancer she did not act like it. They had scheduled an appointment with her to come in at 7:50 AM on Monday to discuss the CT results. I went over the medications she had been prescribed for the pneumonia and was confused about a couple things. She was very wheezy. I brought my stethoscope and listened to her lungs. I couldn't hear anything on the left side. I didn't want to be THAT daughter, but I had some questions and concerns for the doctor so I wrote them down for her to bring to the appointment. I didn't think I was being unreasonable with my concerns.
There are two things from that weekend that really stick with me. The first is that she just did not feel well and she asked me, "When will I feel better Danielle?" I told her, "In about 10 days Mom." Ten days. I told her she would feel better in ten days. I shake my head at this. I had no idea she would never get better.
The second thing that sticks with me is that not once that day did she mention it would've been her and Dad's 45th anniversary.
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