Home from the Hospital

On the morning of Tuesday July 29, 2014 they told my Mom she could go home from the hospital. She was more than ready.

I arrived to the hospital early afternoon. I had bought her new sandals because none of her shoes fit her anymore because her legs were so swollen. Aunt Pat had already packed most of her things up. The nurse and the case manager kept coming in with information for discharge.

Her potassium was low that morning so the nurse brought her some liquid potassium. Potassium is bad no matter how you take it, the liquid tastes awful, the pills are huge, and IV burns. It was only moments after drinking it my Mom screamed and spit it out. Her mouth, oh no her mouth, I had completely forgotten about all the sores in her mouth. She cried from the pain. The nurse apologized profusely, my Mom told her it was okay. I felt bad for not even thinking about her mouth because I could've prevented this.

Things calmed down a bit and Mom was ready to go. I flagged down the nurse to come back and take her IV out and then I went downstairs to get the car. I missed a voicemail from her asking me what entrance I was going to be at. I still have that voicemail as well as 6 others that I'd saved since she was diagnosed with cancer. Sometimes I listen to them just to hear my Mom's voice.

I pulled up to the main entrance and she was wheeled out pretty soon. She got in the car and looked relieved. She took a deep breath. She turned and looked at me and said, "I feel too good to be dying!" I smiled.

We stopped at McDonald's on the way home and she got a vanilla milkshake. We hoped it'd make her mouth feel better. We pulled in to her apartment parking lot and Aunt Pat met us at the car with Mom's new wheelchair. I pushed her up through the walkway to her apartment. I took this picture.

We walked inside and got things settled. She wanted to sit outside for awhile so Mom, Aunt Pat, and I went out to sit on her patio. Mom came out with her walker, but also with her cane. I did not ask why. We sat outside and chatted a bit. Things felt a little uncomfortable and there was silence at times. She decided to go back in without her walker or cane. She started to walk in and said, "I'll come back for that later." Aunt Pat and I just looked at each other. It was only a couple seconds of her walking into her apartment that she crumpled to the floor. I did not scold her or tell her she should've known better. I knew she knew better but telling her would've only made things worse. I knew she was embarrassed. She said it herself that it was a dumb thing to do and she guessed she'd learned her lesson. 

She was home, but things weren't the same. The infection was gone, but she was weaker. Her mind was not as sharp. She was different. I was glad to have her home from the hospital but again I felt another door close behind us. It was another thing to check off on Mom's cancer journey. We did the hospital thing once and I had a feeling she'd never go back. 

The next day I called an elder law attorney to help us draw up a will, designate her power of attorney and get everything in order. We needed to devise a plan. I also called a funeral home and set up an appointment for us to go and make her final arrangements. 

Summary of Hospitalization

I haven't been quite sure how to write about the rest of Mom's hospitalization because I remember events but not in sequence, and I haven't figured out a way to tie it all together into a meaningful post. I've decided to just write it as what I remember as significant to me and hope it all lines up in the end.

I left off on my last blog post on Saturday July 19, 2014. On Sunday, I remember that I didn't come until the afternoon because I knew my Mom planned to have many visitors that morning and early afternoon. When Aunt Pat came home mid afternoon we chatted before I headed up to see her. She said Mom was in great spirits with all the visitors and loved chatting. She said Mom was the "Belle of the Ball." That made me smile. Her friend Andy took some great pics and sent them to me.

Mom with her friends from Trinity Baptist Sharon and Bud.

Mom with her brother Michael and Tammy

Mom with friends from Trinity Baptist Kate Maria, Stu, and Andy

I remember on Monday I came and I brought her bills and paid them out of her checkbook having her sign them. I realized that from now on I needed to take responsibility for this, I needed to know what bills she had and when they were due. I believe this was the day I also brought her her new cell phone case. I asked her to please stop throwing her phone when she was upset. She looked at me and ever so sweetly and innocently said, "Well...I never intend to." That cracked me up. She also had several visitors come, one being my Dad's sister Sheila who I know she had not seen in a long time. I thought that was incredibly nice of her to come and I wished she and Mom had had more of an opportunity to talk one to one. 

I remember Monday evening I left early, before I "tucked her in." I was worried about this, would she be okay going to bed in the hands of strangers? I wished I hadn't left her. I awoke to a text that Monday night was the worst night ever, all the nurses did was nag, nag, nag her she told me. I'm not quite sure what happened, but I have a feeling it was probably not the nurse's fault. My Mom requires a particular way of being spoken to and asked things of and I have a feeling that young nurse did it all wrong. I shouldn't have left early, by staying until she went to bed and following her routine I knew I eased her anxiety. 

I remember on Tuesday she texted me that her white blood cell count was severely low, she was being placed in neutropenic precautions because the low white blood cell count meant she was severely immunosuppressed and prone to more infection. This happened because of the one day of chemo she received the prior Tuesday. At the end of each cycle of chemo she was supposed to receive a shot to help keep her white blood cell count up. It was forgotten because no one consulted oncology until we asked. An infectious disease consult had been ordered but the doctor wasn't available to come in until Thursday. This shocked me. I'd guess that missing that one shot added a week to her hospitalization. It turned out that she did not have MRSA in her blood but it was a strep infection which was apparently unusual. She needed a blood transfusion that day as well. She slept a lot that day. I took this picture.

I remember sometime in the beginning of the week that I was there when physical therapy came in to work with her. The physical therapist was her friend she had known for a long time but had not seen in years. My Mom was very happy to see her. I remember I asked the therapist if she should have therapy at home thinking obviously the answer was yes, but I needed to prepare my Mom. To my surprise her friend said no she wouldn't advise it. She said she knew my Mom and she would never sit still at home anyway. If they gave her exercises to do on top of this she would do them and try to go above and beyond. She would wear herself out. The therapist was right, I hadn't thought of that. 

I remember on Thursday probably about 9 PM, the infectious disease consultant came. The doctors and nurses had said he was the best, that he was worth the wait. I'd say he spent at least 45 minutes with my Mom taking her history and examining her. I was very impressed. She had wounds on her legs from swelling and I remember that he unwrapped them and then he rewrapped them as they were before. Fellows nurses know that that is a sign of a great provider and one who was obviously considerate of the nurses' time. My Mom took to him very well. She was in good spirits after his visit, I took this picture before I left.

I think it was also maybe this day that before I left she said, "I'm sorry I won't get to see Lydia grow up." I said, "I know, but Caitlyn needs you in Heaven." 

I remember that week Mom was going down for her daily radiation treatments and Carly wanted us to speak to a radiation oncologist while there. Both her normal radiation oncologist and her medical oncologist were on vacation the majority of her hospitalization, what luck. Mom was having pain deep in her left hip area I think, an area she was not receiving radiation to. Carly wanted to know if radiation would be beneficial to this area. The radiation oncologist looked at her reports and was somewhat confused because in the particular area Mom was pointing to there didn't appear to be cancer. He called the nurse the next day and told her to put me on the phone. He had looked at her scans more closely and saw what others had missed, she had fractured her pelvis. We're not sure when. Maybe she had fallen and hadn't told us or more likely the cancer had just eaten through her bone. He obviously advised against radiating this area. 

I remember on Friday I decided to stay home for the first time. I had been traveling to and from Muncie each day an hour each way. I of course didn't mind but I was worn out from traveling, the emotion of it all and caring for a 2 year old and 6 week old and coordinating child care. I had tried specifically to get pregnant with Lydia so I would have the summer off and it worked. This was not at all the maternity leave I had imagined. God had different plans for me. I enjoyed the day off at home. I sat outside and watched Amelia play and it felt wonderful.

I had tried my best to arrange with my Mom's friends for someone to be there to help her at bedtime. I was very, very nervous to leave her. 

It was also on Friday that I talked to my manager about returning to work. How was I going to work and take care of my family and my Mom? At the time, we had a weekend option nurse practitioner. He only worked Saturday and Sunday and took all the weekend call. He was leaving. I'd hoped I could have that position. I knew I would need to move Mom in with me. I didn't know quite how, I thought maybe we could turn the dining room into her room. My major concern was the bathroom. We only had a half bath and it was very narrow. It would be very difficult to navigate with a walker, impossible with a wheelchair. There was no bath or shower on the first floor and she couldn't climb stairs. However, we could make it work. I Googled portable baths on Amazon. I figured I could watch the girls and take care of Mom during the weekdays and work the weekend. Maybe Ryan and Carly or her friends could come on the weekends. My manager told me however that they were eliminating the weekend option position. I had no idea what I was going to do. How could I ask Spencer to care for a 2 year old, a baby, and my ill mother? That would really be pushing our wedding vows to the limits. I had to hold back tears on the phone with my manger. I could hardly talk. I managed to get out, "I'm so stressed out. I need to take care of my Mom." She said, "I know, I know." I can tell you that any future house Spencer and I have will be able to accommodate a sick parent or family member if needed. I will not make that mistake again. 

I remember on Saturday I brought Lydia up. I had avoided taking her due to the staff's suggestion because of Mom's immunosuppression, but her white blood cell count was going back up and the infectious disease doctor said it was okay. I remember I went to the bathroom and I asked Mom to hold her and watch her while I was gone a few minutes. It felt great to give her just a few moments of responsibility for my child. I missed the Mom who was able to care for my child. I came back and captured my absolute favorite picture of Mom and Lydia.

I remember that at some point during Mom's hospitalization Lydia and I had a great breastfeeding victory. She latched without the stupid shield. I never achieved this with Amelia. I didn't think it would ever happen. While it was still a significant struggle, getting rid of the shield was a major victory. 

I don't remember what day it was but close to Mom's discharge which happened on Tuesday July 29, 2014. I think maybe a nurse was in the room and I don't know what triggered it but Mom broke down. She was tired of being in the hospital, she was tired of being sick, she wanted to go home. Her pastor walked in the door, but I knew Mom wasn't up for visitors so I talked to him out in the hall. I said she was ok, she was just overwhelmed. He understood. I went back in and sat with Mom and just held her hand while she cried. 

Hospital Continued...

Friday July 18, 2014

After going to sleep in her hospital room at 4 AM, I awoke at 7 AM since things were getting busy in her room with getting her vitals, giving medications and so forth. Mom's mouth hurt very badly from the sores and thrush and I asked the nurse if the nystatin and viscous lidocaine was ordered. It wasn't. Strange, we had gone over with the pharmacist personally all her meds she needed. The nurse said she would call to get an order but I didn't want to wait. I knew Mom had the lidocaine and the nystatin in her purse so I got them out and gave them to her. I knew it would be fine, but I told her not to tell anyone as it was a no no. With her memory being foggy, I was worried she would rat me out.

I was trying to keep people updated on Mom and letting people know she was in the hospital. Sean, naturally, seemed especially worried as he was in California and obviously couldn't be there. I wanted to take a picture to send to him. I told her to smile and she half heartedly smiled. I said, "Smile for Sean," and I got this:

I forget how I knew, maybe because it was planned the morning before she was hospitalized but I knew the plan was to take out her port-a-cath since they thought it was likely the cause of the infection. I asked the nurse about this, she didn't know. I asked the hospitalist when he came in, he didn't know. I asked if she would get her radiation treatment that day, he didn't know. A case manager came in to introduce herself and explain her role to my Mom. She said the average length of stay for a diagnosis of sepsis was 4-6 days. Mom said, "Ok I'll stay five," as if it was her choice. She thought it was awfully big of her not to insist upon 4 days when she really wanted to go home right now.

Aunt Pat got there pretty soon and she thought it would be a good idea if I went back to the apartment and got some rest. I obliged and went home and took a nap waking up mid afternoon. Aunt Pat had texted me and said they were going to take Mom for surgery to remove the port and for me to come to the surgery waiting room. I got there and Aunt Pat was chatting up some other women who were also waiting on their loved ones in surgery. She makes friends anywhere. She then kept telling me that they had great hot chocolate in the waiting room. She had put some packets in her purse and she thought I should do the same. Gosh, I love that woman.

When surgery was over we went back to her room to wait. I saw a woman with dark hair and a man peeking into her room. I thought, "Who the heck are these people and are they just going to stare at us from the hall?" The woman introduced herself as Shelli and I was instantly happy to meet her. I don't think Mom had known her for too long maybe a year or two from Trinity Baptist but she had spoken of her so much recently and what a kind person she was. She and I instantly hit it off, it is impossible not to feel at ease around Shelli. My Mom has always had an affinity for "real" people and Shelli is definitely that.

A few days later I found this message on her phone. Apparently Mom texts God sometimes.

Saturday July 19, 2014

On Saturday I drove up to Muncie with Lydia mid afternoon. I figured she'd be busy with visitors that morning anyway. When I walked in with Lydia in the stroller, Mom snapped at me, "What are you doing here?" "Uh, to visit you?" I responded. "Don't they think I might have MRSA?" she said. "Yes." I responded. "Well do you really think you should be here with a baby?" she said. Hmm...valid point, but the infection was in her blood, so I wasn't worried. Plus, I work daily with people with MRSA and all sorts of other fun bacteria so if Lydia was going to get anything, it would be from me. I brushed off her harshness.

She started doing something that summer I affectionally called "rapid cycling." My Mom was always known to us to hold a grudge. If she was mad at you, things weren't going to pleasant for at least 24 hours...if you apologized. But that summer, she seemed to get over her anger more quickly. I assume she just forgot she was angry or what she was angry about. Maybe she realized it wasn't something worth being upset about.

Carly was there and brightened up the room with her ever cheerfulness and finds she had bought at the farmer's market that morning. She showed each item to my Mom and my Mom was very interested. She had bought me a black and red wrap skirt. She had to show me how to wear it and helped me try it on. Mom thought it was just gorgeous.

Mom seemed in quite a bit of pain. Carly and I asked if she had been getting her pain medicine. She didn't know. A nurse came in and we asked her. Was Mom getting her scheduled morphine? No. Was she getting her scheduled steroid? No. Had anyone consulted oncology so her treatment plan could be carried out? No. Sigh. It was different being on this side in medicine, being the family member. Those medications were vital to her. We had told them when they'd asked for her med list. Did it even matter we had given them her med list? Did anyone read it? I don't mean to toot my own horn, but I like to think I take very good care of my patients. I try to look at the whole picture. It's time consuming, it makes me slow and not a profitable employee. It was very disheartening for me to see how it was to be the family member and gave me new perspective for the family members of the patients I treat. I'm not blaming any one individual or profession, it's a systems problem that is focused on treating the maximum amount of patients in the minimum amount of time. People really do need someone to advocate for them in healthcare. It worries me for people who don't have someone to do that.

Aunt Pat, Carly, and I decided we would go out for dinner at the Pizza King near the hospital. I told Mom I would come back to help her before bed and wish her good night. We went to the restaurant and ordered a baked ham and barbeque pizza (my favorite) and a pitcher of beer. Aunt Pat and I needed a beer. :)

We discussed Mom's harshness when I walked in. I don't remember if it was Carly or I that asked, but we wondered why was Mom so mad? Why had she always been so mad? We looked to Aunt Pat for any answers, she had known her the longest. She didn't know. What had made her this way? Had something happened to her when she was young? She had never disclosed anything traumatic happening to her in her childhood or young adulthood. Aunt Pat told me she had been this way since they had met. I know she was like this in the time Dad first met her. I love my Mom dearly as I hope this blog reveals, but I will tell you I spent a lifetime walking on eggshells trying to keep her happy. I just wanted her to be happy. If she was happy, I was happy. If she was unhappy, I was unhappy. I don't know what troubled my Mom's heart so to make her hold the anger she had, but it makes me sad. One of the reasons I have not had too much trouble making peace with my Mom's death is I know that she is free of whatever troubled her. She has peace now she never had on Earth. She is free.

When I got back to the room, Mom was in great spirits. I helped her to the bathroom, straightened up her bed, and cleaned up her room, folding blankets, stacking pillows, throwing away trash, closing cabinets and drawers, arranging her bedside table. A clean room would make my Mom feel at ease.

As I was getting ready to leave I picked up the bag with the skirt in it. Mom asked, "What's that?" I said, "It's the skirt Carly bought me." She said, "Oh! Let me see!" Without saying a word, I took it out of the bag and tried it on again and she ooh'd and ahh'd over it just as she had done two hours prior.

Miles To Go Before I Sleep

My Mom has been gone 10 months today.

As much as this blog is helping me to work through my grief, to make sense of each day as it happened, it is becoming increasingly difficult to write. Not just in so much as the entries are emotion filled, but the time I need to dedicate to write them is hard to come by. Amelia goes to bed at 9 which leaves me a couple hours to do everything I need to do, notably to finish my charts from the work day. I run days behind. The days I want to remember and record are also becoming more frequent as my Mom's condition declined which means I need to write more blog entries. I put this blog first though, it is important to me.

On New Year's Eve last year I thought, finally this year is over. I can put 2014 behind me. Better yet, maybe I can put 2010-2014 behind me. Christmas had been difficult, I did not decorate at all. I did not listen to any Christmas music, my Mom had loved Christmas music and we listened to it on records, tapes, and cds. I tried to put Anne Murray on, one of mine and Mom's favorites, but it was too hard, I turned it off.

I then realized that although the year was ending, my journey through this grief was just beginning. I had been numb through the final months of 2014 empowering me with what I needed to do to finalize Mom's affairs. I felt a heaviness in my heart of all I would still need to go through. I knew I would need to get through 2015 as well, notably the months April through September. I would need to get through each day as I remembered what was happening exactly one year ago. A trait I inherited from my mother is that dates are very important to me. I live a happy life, but I can tell you I am sad right now. I fight to get through each day, my motivation is low. I go to work where my productivity is lacking, I take care of my girls, I make sure the bills are paid, and I write this blog. That's about all I have the strength for.

I hope 2016 is better, I've heard "You don't get over grief, you get through it," and I find that much more relatable than, "Things will get better in time." No, no they won't, my Mom, my best friend, is gone, taken far too soon and far too quickly.

In the meantime, I find Robert Frost's poem "Stopping By Woods On a Snowy Evening" relatable to this year.

You Need To Go To The Hospital

On Thursday July 17, 2014 Mom went to chemo. She was getting sicker, she had a fever and chills so they wouldn't do chemo just as they had sent her home the day before. I believe the oncologist sent her over to see the surgeon who had put the port in to see if it was infected. She texted me that she was at the hospital for a "detour" and would call and tell me about it later. Aunt Pat tells me the oncologist wanted to admit her to the hospital but Mom said no. She was fine, she said, she wanted to go home. They drew blood cultures before she left or maybe they drew them the day before when they first noticed the fever, I can't remember. The doctor said she would call Mom with the results and she may need to go to the ER. Mom said, "We'll see."

I talked to Aunt Pat on the phone, she told me Mom was very sick and could barely walk. The oncologist told Aunt Pat that if her fever did not go down, she must bring Mom back to the hospital. Aunt Pat was worried she wouldn't be physically able to get Mom out of the apartment to go to the ER. It was obvious Mom needed to be hospitalized but she wasn't going to go on her own will and she wasn't going to listen to Aunt Pat or I. Aunt Pat told me Mom's phone had been ringing but she would not answer it. I did some quick thinking, I posted on Facebook asking if anyone had a wheelchair, a friend did and I sent Spencer to go pick it up. I decided we would all go to Muncie. I knew she would listen to Spencer if he told her to go the hospital and I needed his physical help. I tried to book a room at The Hampton in Muncie. I tried three times but the reservation would not go through. The phone rang and I answered. It was her oncologist's office. They said they had tried to call her but they couldn't get through. They said Mom had an infection in her blood, possibly MRSA, and that she needed to go to the hospital now, she needed IV antibiotics. 

I called Aunt Pat and told her what was going on. I told her to get Mom on the phone. I will never forget the sound through the phone as I listened to my mother walk to the phone....her walker creaking, her breath gasping and her moaning in pain. "Hello?" she answered clearly annoyed. I told her she had an infection in her blood, possibly MRSA and she had to go to he hospital. She responded, "I don't want to go to the hospital Danielle." Normally I would beat around the bush with her trying to be positive, trying to be optimistic, but I was very honest with her. I said, "I know you don't want to go to the hospital Mom and you don't have to go. But if you don't go, you're going to die. If you don't want to go, I will support you, but you are going to die and you need to be prepared for that." She sighed and paused, "Well what do I need to take to the hospital with me?" 

I left Noblesville by myself to drive to Muncie to meet them at the ER. I thought they would be okay without me for awhile so I actually stopped at McDonald's to get a sandwich and Target for a part I would need to pump. Aunt Pat texted me to please hurry Mom did not look well. She was still in the waiting room, but she was hunched over and shivering. They had taken her blood pressure and it was very low. Aunt Pat said another person waiting said Mom really looked like she needed to be seen as soon as possible. They went up to the desk and told them, "Don't you think you ought to bring that lady back?" 

When I got there, Mom had just been taken back to a room. I walked in the waiting room and looked around, they weren't there and no one was at the desk. Another person waiting said, "You must be looking for your mom, they just took her back, you should just go on back." So I did. 

Later Aunt Pat told me that when I came back to the room, Mom lit up, she instantly looked so much better. This was a surprise to me because she looked very bad when I saw her which means she looked worse before. She looked absolutely defeated. The cancer had gotten the best of her. She glanced up at me, she did not smile or speak, and she looked back down. 

I actually took this picture the next day, but it reminds me some of how she looked when I first saw her in the ER.

I mostly chatted with Aunt Pat in the room. Mom just continued to look down, looking up only if someone walked in the room. Mainly we just did a lot of waiting. People came in to draw blood, get a chest x-ray, take down her medications. She was going to be admitted, but we were waiting on a room. I grabbed a gown to cover so I could pump in the room. They said Mom could eat, but she said she didn't want anything. She said she was very hungry but it hurt too much to eat because of the sores in her mouth. 

I had arrived at the ER between 6 and 7 PM, we were still waiting on a room at midnight. I told Aunt Pat she needed to go back to the apartment. She needed to rest so she could come back in the morning. I would stay with Mom. 

They finally had a room for her about 2 AM. The ER doctor came back in saying he needed to clarify one more thing. He wanted to know what Mom's code status was. Without looking up, Mom just said, "Danielle..." directing me to answer. I said, "She a DNR." Do Not Resuscitate. If her heart were to stop or she were to stop breathing, no she did not want CPR. I will never forget the ER doctor's response. "Really?" he said. "Really." I replied. I didn't expect him to understand, he seemed young, new, unsure of himself. To him, she was someone with a blood infection. To us, she was a woman battling an aggressive terminal cancer. No, I would never want my mother to have CPR. To have her beaten, her ribs broken, a tube shoved down her throat? For what? For absolutely nothing. No thank you. She was in enough pain. 

I walked behind her as they took her up to her room on a stretcher. I glanced at piece of paper clipped to her chart. It said, "Sepsis, bilateral pneumonia." 

We got up to her room and they got her settled in. I answered the nurse's questions. I told my Mom I was going to run back to her apartment so I could pump again and refrigerate my milk. 

On the way back to the hospital I remember I heard Coldplay's Sky Full of Stars on the radio for the first time and it resonated with me.

Cause you're a sky, cause you're a sky full of stars

I'm gonna give you my heart

Cause you're a sky, cause you're a sky full of stars

Cause you light up the path

I don't care, go on and tear me apart

I don't care if you do

Cause in a sky, cause in a sky full of stars

I think I saw you

Cause you're a sky, cause you're a sky full of stars

I want to die in your arms

Cause you get lighter the more it gets dark

I'm going to give you my heart

And I don't care, go on and tear me apart

And I don't care if you do

Cause in a sky, cause in a sky full of stars

I think I see you

I think I see you

Because you're a sky, you're a sky full of stars

Such a heavenly view

You're such a heavenly view

Sky Full of Stars Video

I returned to her hospital room and she was awake. She already looked much better having had some fluids and antibiotics. She actually smiled. 

It was about 4 AM Friday July 18. I was exhausted. We were fortunate that her room was very large and very nice. It had a seating area that could be used as a bed. She told me to lie down and get some sleep and so I did. 

She's Getting Sick

On Tuesday July 15, 2014 I went to chemo with my Mom for the first time. It was her first day of the 3 day cycle so she was estimated to be there for 4-5 hours. She was also supposed to start radiation that day. Additionally she would be seen by Dr. Brown and I had a lot of concerns.

Mom's bone pain had become very bad, she was having great difficulty walking with her cane. Her mouth pain was terrible too and she couldn't eat. She had a walker in storage at her friend Andy's house. She had it leftover from using for her hip replacements years before. Mom wanted it she said, but to get her to actually contact Andy seemed impossible. I asked her to give me Andy's number but she wouldn't, she said she would call her. I think possibly she did intend to call her but her memory at the time was very short. I didn't have the number of any of her friends and this worried me. I was finally able to get ahold of Andy through a Facebook message to come bring her the walker.

On Tuesday morning I drove up to Muncie early in the morning and we went to chemo. Aunt Pat sent me off with my favorite chocolate iced cream filled donut from Concannon's. First she had her port accessed and blood drawn. She was so cheerful and positive despite her demeanor the past few days. Next we went to go see her oncologist. Before she came in Mom was complaining about her mouth pain again. For some reason I hadn't actually looked in her mouth yet up to this point. When I finally thought to I saw it was more than sores her mouth was coated in thrush. It looked so painful.

When Dr. Brown first came in, she reviewed the results of Mom's second PET scan.

"Impression: Significant interval response to therapy with near resolution of the left lower lobe mass, subcarinal adenopathy, AP window adenopathy, retroperitoneal adenopathy, and several skeletal lesions. Hypermetabolic left hilar and pretracheal adenopathy remains, consistent with residual disease. There are persistent though decreased metabolic activity lesions in the right medial ilium and left lateral sixth rib. No new areas of disease."

The lung mass had shrunk from 5.4 x 5.2 cm to 1.7 x 2.17 mm. Incredible. The chemo had shrunk it from the size of a baseball to the size of an ant. My Mom was elated, her eyes welled with tears and she turned to me smiling. I wish I could go back and change my response now, but I only half smiled in return. "So what?" I thought. At what a great cost to her body and mind this had come. The chemo had done exactly what they said it would do...it would shrink it until it was almost gone...but it would come back, they had said, and with a vengeance. The chemo had attacked the cancer like they said it would but it had attacked her whole body as well. I couldn't be happy. I don't think, I hope I didn't, portray my pessimism to my Mom.

What bothers me now and what I noticed a couple weeks later when I had the actual results in my hands is this line:

"New airspace consolidation is identified within the posterior aspects of the right upper lobe, likely infectious."

She had pneumonia, this test had only been performed 5 days ago. It was surely worse by now, but I guess no one saw that one line in the 2 page reading of the results of the PET scan.

We went through all the concerns I had about Mom. I tried to let Mom talk and to not talk over her. She gave her nystatin and viscous lidocaine for the thrush and sores. She gave her a prescription for more morphine. She added a prescription for oxycodone because Mom's pain was so bad. She wrote a prescription for a wheelchair. I can't remember if anything else was discussed.

She was taken back and set up for chemotherapy. I went back with her and got set up so I could pump milk for Lydia. Oh the crazy places I pumped last summer. A social worker came in to talk to Mom about setting up the counseling my Mom had requested. She had decided she needed to talk to someone to get past her anger regarding the divorce. A radiation therapist came in and said unfortunately they were not ready to start Mom's treatments yet. They hadn't finished mapping out her plan yet or something. I quizzed the radiation therapist about every detail of why this wasn't happening because I knew Carly would want to know. He said he knew Carly from school and that she would understand. I said, "Ok but I don't think she's going to be happy." I texted her...she wasn't happy, she didn't understand.

During the middle of the session I took this picture of Mom. I thought she looked so cute, I'm not sure what she was doing but it looked like she was taking care of important business.

She finished and we went back home. Aunt Pat had taken good care of Lydia, no doubt in my mind that she would.

I drove to Wal-Mart to fill her prescriptions. I had been getting tired of Wal-Mart. The line was always long, they weren't always the nicest, and they didn't always have the medications Mom needed. They wouldn't have the morphine or oxycodone for 2 or 3 more days they said. That wouldn't work. I had planned on switching her prescriptions to Meijer so I called them. They couldn't tell me over the phone if they had the medications available, something about laws and people stealing. So I drove to Meijer and waited in line. They didn't have the morphine or oxycodone either. I dropped off the prescription for the Nystatin and lidocaine and went to Walgreens. Was I going to have to drive all over town? I had no idea it was this hard to fill narcotics from retail pharmacies. Walgreens didn't have the medications either so they advised me to try the 24 hour Walgreens or CVS on Tillotson as they tended to have a better stock. I appreciated the information. I drove there and they did have them in stock. Thank goodness. 

I drove back to the apartment and Andy had bought us grinders from Mancinos. Mancinos was a place Mom and I loved to go. I'm not sure if she ate much of hers but the kindness was appreciated. I said my goodbyes and Lydia and I drove back to Noblesville. 

The next day Mom would be sent home from chemo due to a high fever. 

Things Are Getting Rough/Aunt Pat Returns

The day Sean and his family left Muncie Mom had her second PET scan. She had completed two cycles of chemo and the plan was to have the scan to check on the status of the cancer. She had allowed her friend to take her to this appointment.

On Friday very early in the morning Spencer and I took Sean and his family to the airport. I was having a rough time myself that morning as I had developed a blocked milk duct and was in pretty bad pain. Unfortunately both of my girls have been extraordinarily difficult to breastfeed and both had latching issues leaving me to have to pump every 3-4 hours around the clock. My routine was every 3-4 hours try to breastfeed Lydia, then give her a bottle, then pump for the next feeding. I had been doing this for 6 weeks and it was tiring. Mom had a radiation simulation scheduled that day to mark her body properly for the radiation treatments. I had wanted to take her to that appointment but she insisted she go alone. She insisted she drive. Her exact response to me offering to take her was "No, no Carly offered but no, I will be just fine. It's called a simulation..duh...sure hope NO ONE SHOWS UP CAUSE I WOULD REALLY HATE MY STUBBORN MODE AND NOT SHOW UP OR WALK OUT! I am fine, thanks." Well...that's just lovely Mom. So against my better judgment I did not go and she drove herself. She was fine but I do believe that was the last time she drove although I could be wrong. Thankfully, stopping driving was a decision she made on her own.

I came that Saturday to spend the weekend with Mom. Aunt Pat was returning on Sunday and Mom was set for her next round of chemo on July 15. I brought Lydia with me. It was obvious Mom was getting weaker. The side effects from the chemo were in full force. Her mouth had become full of sores and she was hardly able to eat anything. I will say this was the one side effect of chemo that was the worst for my Mom, the pain in her mouth was terrible and she was simply not able to eat. With the sores, her voice changed as I imagine the sores extended down her throat. This was a hard change for me, I missed the sound of my Mom's voice. Her voice had now become quiet and haggard. She had also swollen up quite a bit, in her face and in her legs from the steroids. She was losing weight, but appeared so bloated. I snapped a picture of her and Lydia and then looking at the pictures and made a comparison of just one month prior.

The change was remarkable.

 

That Saturday I went to Verizon to get her a new phone. Hers was falling apart because whenever she was upset lately she would throw it. They had an upgraded version of her phone so I went to go get that. The sales representative kept trying to convince me she needed a smart phone. Finally I said, "She has cancer, she's sick, she needs a phone she already knows how to use. And she needs a case because she likes to throw her phone." He understood and helped me, he even said her previous phone was under warranty so she could just get a new one no charge. Great.

Afterwards I went to Redbox to get us a movie to watch. I decided on August: Osage County. It had Meryl Streep and Julia Roberts in it, it had to be good right? It was a bad choice. It's a very dark, depressing movie, but there were bits and pieces of the movie that resonated with me. The main character who Meryl Streep plays has oral cancer. She is cruel. Her husband leaves and both of her daughters end up leaving her so she is only left with a hired caregiver. The line that struck me from the movie was, "Thank God we can't tell the future, we'd never get out of bed." That was exactly how I felt about the last five years of my life. Caitlyn's death, divorce, cancer. It was indeed hard to get out of bed many mornings. My Mom slept off and on throughout the movie thankfully. Sometime that night I finally told her Dad had prostate cancer. Her response that I mentioned in a previous entry was "Well, I wish them well." 

The next day Sunday July 13, 2014 Aunt Pat was to return. Aunt Pat liked to leave early on Sundays because the traffic wasn't as bad. Mom didn't seem excited as she was the last time to have Aunt Pat return. She was sicker now, she was weak, she actually needed someone to be there. She needed more than a friend, she needed a caregiver and that was very hard for my Mom. Aunt Pat left eastern Ohio at 5 AM and made it to Mom's apartment a little after 10 AM. When Aunt Pat called me to tell me she was almost there, I told Mom and Mom seemed flat, almost annoyed. When Aunt Pat came in Mom barely responded to her. It was not the joyous greeting it had been a month prior. This cancer was making things really hard, Mom was in the middle of the battle and felt like she was losing. I felt embarrassed at my Mom's response to Aunt Pat. Aunt Pat had just driven 5 hours to be with her for chemo and to help her and this was the thankfulness my Mom showed? My Mom was clearly irritated. A little while passed and Aunt Pat and I were sitting in her living room talking, Mom came to sit down and Aunt Pat reached for her heavy purse to move it off Mom's rocker. Mom burst into tears and screamed at us in her haggard voice, "Stop treating me like an invalid! I just want to die!" We were shocked, we were just trying to help. We sat there silently for a long time as Mom cried and I cried, and Aunt Pat looked away. This was hard, this was really really hard and it wasn't going to get easier. This is what Dr. Mares meant when he told me two months prior, "Your Mom has a hard road ahead of her." 

Things improved a little after that, Mom was being nice to me but still cold to Aunt Pat. We decided I would go with Mom to her chemo on Tuesday because she had an appointment with her oncologist prior and I really wanted to hear the results of the PET scan. Aunt Pat would watch Lydia. I felt badly Aunt Pat had driven all this way and I was going to use her as a baby-sitter on that Tuesday, but I really wanted to go to that appointment. 

As I was leaving that evening, Aunt Pat was sitting out on Mom's patio. I could tell she was very hurt. Mom was being so harsh with her. Mom was acting similarly to Meryl Streep in the movie we had just watched the night before, I hate to say it, but cruel at times. I tried to apologize as I'd done a few weeks before. Instead of telling me that everything was okay like last time Aunt Pat just responded, "Yeah." This was hard, I felt terrible. I wanted to tell Aunt Pat that she didn't deserve this, that she should just go back home, but I needed her help desperately. 

However, as cold as Mom was acting to Aunt Pat, I knew she felt better having her there. 

Sean Leaves

My brother Sean and his family had come into town on Saturday June 28, 2014 and were set to fly back to California Friday July 11. They enjoyed a two week stay in Muncie spending time with our Mom and celebrating what we assumed would be her last birthday.

When Sean was originally thinking about coming into town he had trouble debating when he should come. Sean and his wife Teal and their two children Liam and Noey lived in northern California at the time. A plane trip to Indiana involved at least four airports, a full day of traveling, and approximately $3,000 for the four of them. On top of that my sweet 4 year old (at the time) nephew Liam has a diagnosis of severe autism. Traveling was far from easy for them. Sean had a choice between coming when my Mom was still alive or coming for her funeral. He chose to come while she was still alive.

They stayed in a hotel near her apartment and spent most of the time just being with her in addition to traveling to visit my other brother and myself. The two Sundays he was there he went to church with her.

On Wednesday July 9, I came with the girls to visit as well. I don't remember much of that day if I stayed for awhile or what we did, but I know I left earlier than I planned. My Mom was getting irritated with me for reasons I cannot exactly remember. She was also getting irritated with Amelia. Amelia was the poster child for terrible twos and her screaming was understandably hard on my Mom. I remember feeling that I just needed to leave and take Amelia home. Maybe that was why my Mom was upset with me, but I felt she would feel less anxious. That summer I distinctly remember feeling sad that I couldn't bring Amelia around as much as I wanted. This time we had with her was precious but the noise was too much for my Mom. I hesitate to write this for fear Amelia will read this blog someday and feel badly. Maybe I'll delete this paragraph someday. Simply, her toddler behaviors were too much for my Mom and too much for me to handle while caring for my Mom. Lydia spent a lot of time with me in Muncie that summer and Amelia spent a lot of time in Noblesville with Spencer or Kristina that summer. I suppose it is what it is, but I digress because I really didn't want this post to be about me.

After we left, Sean and Teal tell me that Mom came up with the idea to go to the reservoir. So of course, they went. I'm glad we left. I'm glad they had this special time together. They took a lot of really great pictures.

Mom's first accidental selfie

 

Family photo my Mom took

 

Baldies

And when they returned home...

 

It was hard for me to imagine how my brother must've been feeling. At the time, he thought this was the last time he would see Mom. He did end up flying back later in September the night before she died. How, I wondered, do you say goodbye to your Mom? A mom who is not yet dying or even very ill, but the future so grim. How? Try and think about that. How do you say goodbye to your mom, your dad, your spouse knowing that while here now they are going to die and you will never see them again? I've thought maybe this is how people feel when their loved ones go off to war. The future is uncertain, but I think it's not the same. At least in America that I know of we don't send people off on suicide missions. We know that while the possibilities include dying, the expectation is that they will return home. I concluded it wasn't the same. The expectation was that my Mom's cancer was advanced, it was terminal and she was going to die. The expectation was that he would never see her again. This was the final goodbye to the mother who had raised him, rocked him, sang to him, took him faithfully to his speech classes, attended all his ball games and wrestling meets, traveled to California for the birth of his children and on and on and on. At least to me, to think about it is unfathomable. I cried thinking about it then, I cry now. I cannot even for a second understand what it must've been like to be in my brother's shoes. 

On the other side, how does a mother say goodbye to her child and to her grandchildren? That thought even more unfathomable. I think as a protective mechanism my Mom didn't even consider it. While she didn't want futile care and understood the terminal nature of her cancer, my Mom rarely entertained the idea of dying. Somehow she was going to defeat death. 

I texted back and forth with my brother today as this experience was not mine and I was trying to gain an understanding to write this important post. He said she was never sad, she always stayed optimistic. She did not cry. Of the day he left Sean tells me, "She and I went to the podiatrist that morning. We saw a coworker of hers and she was very upbeat about everything. I saw the lady while waiting later and I talked about how strong Mom was but how serious her condition was since I felt she downplayed it to her earlier. I know Mom wouldn't want her coworkers worried or to think she would complain but I thought she should know things weren't great. When we got back to Mom's apartment there was only time for goodbyes. She walked out in her pink SMA shirt, Adidas pants and was smiling and waving as we drove away. Never a tear or sorrowful word spoken that afternoon. I told Mom that I promised to live a life that would her make her proud and she replied, 'You always have.' That was our last exchange." 

Sean told me he made sure to burn the image of Mom smiling and waving goodbye into his memory. I remember Teal telling me that Mom said she would try to get out to California soon to see them. 

They left for California, for their home, Friday July 11, 2014 very early in the morning and with them I felt another door close. 

Radiation Oncologist Part 2

The weekend after the 4th my Mom was in incredible pain. I forget the exact details but I believe she ran out of her steroid medication, the Decadron, and and she just assumed she was done with it. I believe when she realized she only had a few pills left she started using them sparingly or not at all. At some point she mentioned this to me and I was shocked. No, no she shouldn't stop taking those. She should call for a refill. The steroids were controlling her pain. Despite her being on long acting morphine three times a day, the steroids were the most beneficial. I will tell you when she was finally ordered to taper off of them late last summer was when her true decline began and she died two weeks later. I didn't realize how much the Decadron was controlling the pain and keeping any nausea and vomiting away until after she was gone. I didn't realize how much the Decadron was what was keeping her going until she was gone and I have a fair amount of guilt about that.

I'm jumping ahead and off topic but lately I am wracked with guilt of things I could've done differently that maybe would've kept her alive and improved her quality of life a little bit longer. Yes, I know I shouldn't feel that way. I tried the best I could with what I knew at the time.

Anyway...on Tuesday July 7, 2014 Carly and I accompanied her to get a radiation consult in Muncie. She had had one if some of you will remember in Ft. Wayne where Carly worked at the end of May, but at that time radiation was put off until after she finished two cycles of chemo. I believe they didn't think Mom could handle chemo and radiation at the same time in the beginning without shrinking the cancer first.

They were going to do radiation to the bone metastasis in her spine and pelvis. It was essentially going to be palliative radiation meaning it wasn't meant to cure the bone metastasis but rather shrink it to improve her pain. We were at this appointment for a total of 3 hours I believe and surprisingly I remember very, very little. I had to bring Lydia with me and perhaps I was distracted by her. She was a month old at that point, but only 6 days past her actual due date. She was still so tiny.

All I remember from that appointment is Lydia and Dr. Lin showing us Mom's actual PET scan images. I texted Carly this afternoon to see if she remembered anything else, to see if maybe something she remembered would trigger more memories for me. Her response didn't really, but I will include what she said.

"I remember Dr. Lin talking it seemed like quite a while about the progression of the cancer and the importance of letting others help as needed. Your Mom was in amazingly great spirits that day. I remember you pulling up to the door to drop her off, and she thought that was silly, she was so damn independent. I remember looking at the PET scan and thinking how strong she was, and never complained about the pain, blows my mind! Hope this helps a bit, in some ways it seems like yesterday, but at other times it seems like a lifetime ago. Love you lots luv!!"

Simply speaking a PET scan is a test where radioactive dye is injected (usually) into the body and the images help pinpoint the anatomic location of abnormal metabolic activity within the body. It was a way to get full body image of where the cancer was. The cancer would show up as "hot spots" on the images. I have had patients with PET scans ordered less than a handful of times in my healthcare career because I have never worked directly with cancer. I had never seen PET scan images until my Mom had one done.

Dr. Lin pulled up the images from her initial PET scan before she had started chemotherapy to show Carly and I. As medical professionals both Carly and I really appreciated this and were fascinated. We both stood up from our chairs to look. I swear my mouth dropped open when she pulled up the image of her lungs. Her left lung lit up like it was on fire. My God, I thought. It is hard to describe it but as a person in the medical field and as the daughter of the patient, the image was beautifully horrifying. The technology was amazing to me, the way it lit up the cancer, but to see the actual degree of her cancer was horrifying. Her pelvis and lower spine looked equally on fire due to the bone metastasis.

Dr. Lin was extremely kind and went through more information, but I don't remember anything. Lydia who had been quiet for almost 2 hours was getting upset. She was hungry. I was trying desperately to make breastfeeding work this time, but at 5 weeks out she still wouldn't latch. I had to pump milk for her and I had ran out. I had some back at Mom's apartment. We needed to go home and I was getting frustrated. Finally we were able to leave, Lydia was screaming. Carly sat in the back with her on the way home trying to calm her. Lydia's screams didn't phase Mom one bit, she was still in a great mood for which I am grateful.

Dear Mom: On Your Birthday Without You

Dear Mom,

We crossed another milestone, we celebrated your birthday without you.

We started off the weekend on Friday by going to Carmel Fest. Do you remember two years ago when you, Kristina, Millie and I went? I was excited for you to come over after work that night. Amelia had just started walking and I was excited to show you. I remember when you walked through the door and the surprise in your eyes when Amelia walked to greet you. Speaking of walking, Lydia is doing great in physical therapy, making progress by leaps and bounds. I had a gyro at the festival, just like you and I had last time. I bought a shirt from Little Gypsie and I remembered that pretty aqua chevron skirt you bought from her the last time. I wish I was small like you and I could've kept more of your clothes. I gave most of them to Teal though and that makes me happy.

The morning of your birthday Dad texted me first thing to let me know that he was thinking of me and hoping my day went well. Aunt Pat called while I was in the shower. I know usually she would've called you at the crack of dawn to sing you Happy Birthday.

Originally after your memorial we had planned to have the 4th birthday bash up on Lake Michigan so we could scatter your ashes there as you wished. But we couldn't do it yet, it felt too soon to let you go even though it's almost been 10 months. I know it's just ashes, you're not there, but I can't let you go yet. I tried to put your urn in the curio cabinet, but I remembered how claustrophobic you were and it worried me to just put you away in a cabinet. I know that's silly, you're not really there, but I came down in the middle of the night and moved you back to the mantle. I hope Spencer doesn't mind the small shrine I have to you on the mantle. I'll put it away eventually and we really do plan to spread your ashes next 4th...we just couldn't do it yet.

The party was at Uncle Darrell and Aunt Janet's new house. You would really like their new house. So much of our family has moved since you died. Uncle Darrell and Aunt Janet, Sean and Teal, Alyssa and Jason...they all moved. I just want to tell everyone to stop...stop changing. They're small, but they're places I had memories of you and now they're gone.

Ryan and his family didn't come to the birthday party. I knew they wouldn't. I knew it would be too hard on Ryan and I understood, but I missed them. I was the only Sexton there. It's so crazy it always used to be the five of us as a family together, and now it was just me. Of course I'm grateful I have my own family now. I also want to say I'm really grateful you were so close to your brothers and you guys always celebrated together. The day would've been terribly hard without them. I am so thankful to have them and that they shared your birthday so we can still continue on the celebration. I hope they are around many many more years.

I found those two frames in your apartment you obviously bought for Michael and Darrell. I wondered if you had bought them at Kohl's as I know it was one of your favorite places to look at Independence Day decorations. I stopped at one of their displays a month or so ago, saw some things you might like and it brought tears to my eyes. If I can ever get my life together I promise to decorate for the 4th like you did. Anyway, I found a picture on your camera of the three of you from the birthday last year and put it in the frames. I finished what you started. It was nice to give them a gift that was really from you. The frame was perfect.

It was a really good day Mom, we were happy, we were not sad because I know you wouldn't have wanted that.

Amelia tried on the hat you wore last year.

We put Kristina in charge of the kids' table....just kidding I sat there with her too.

Aiden wanted his photo taken.

Lydia is practicing her duck face in this photo...eek!

Uncle Darrell made sure to mention you in the prayer before we ate. He also wanted me to bring a photo of you so they could still have a picture with you by the cake. He said a few words about you before we sang Happy Birthday. We will never forget you Mom.

He put a pink candle on the cake to symbolize you.

Uncle Darrell was really great with the kids. He is such a good grandfather to Aiden. The kids were anxious to open presents so he patiently allowed them to open some of his gifts. That meant a lot to me. 

Later on before fireworks I asked if he could move Lydia back onto a blanket and he decided to hold her for awhile instead.

After dinner some of us decided to take a walk. Grant decided to try out Aiden's bike. I knew this would've made you smile and I remember you telling me how he could always make Grandma Karsas laugh.

I was worried Amelia would be upset that Aiden had a bike and she didn't have her tricycle, but she didn't seem to mind. He rode his bike and she just ran alongside him. I don't know how she has so much energy. Uncle Michael remarked maybe she'll be a cross country runner. She sure likes to move, move, move! I was so grateful Aiden was there to keep her entertained. They had a really good time.

We finished the day by going to see some fireworks. I haven't been able to see fireworks in a long time because of work and little babies so it was nice to be able to go this year. We set some off in a parking lot (and no cops came this year!). Amelia was a little scared I think, but she tried to hide it. I had two tuckered out girls at the end of the day.

So that was the day Mom, we really missed you. It felt weird to sing Happy Birthday and not mention your name. But it was a really really good day. We were happy. I still miss you so much Momma, but that will never change. I promise we'll never forget you, especially not on your birthday. I hope your first birthday up in Heaven was amazing. I bet they really did set off fireworks for you. 

I bet you were able to hold this little angel too. Give her a kiss and tell her we miss her.