Mom Meets Lydia

On Thursday June 5, 2014 Mom and Aunt Pat planned to come visit me in the hospital and meet Lydia. She had her last treatment of her first cycle of chemo that morning and then she and Aunt Pat were driving down to Indianapolis to Community North Hospital.

It is interesting as I was trying to recollect this day that I realized some of my memories were off. I know that my friends Tori and Kristina were both there when my Mom visited but in texting with them asking details of what they remember, I realized my recollection of the day was not entirely accurate.  For instance, I thought they were both already in the room when my Mom and Aunt Pat walked in, but they weren't.  Although comparing Tori's and Kristina's recollections their details don't really match up either. It's details I suppose don't really matter but goes to show that I'm trying my best to remember things but it might not always be 100% accurate. To my credit, I had just had a baby, haha.

What I remember most about that day was how different my Mom was. She was on top of the world. Kristina recollects about my Mom, "She was happy. She was elated. She saw me in the hallway downstairs and I asked how she was. After we hugged she said, 'I'm just great. I feel wonderful. I'm ready to meet Lydia!' She saw me in the hallway and she had her cane but it wasn't touching the floor. She had her arms out wide to show how great she felt."

It was so strange. She had just had chemo. She wasn't supposed to feel great, she was supposed to be tired, weak, maybe nauseous, but she was not. I was lying in bed when she literally bounded in the room, dropping her cane along the way. The nurse looked surprised. I was shocked. What is going on with my Mother? What exactly did they give her at chemo? Aunt Pat walked in, I looked at her and she just looked at me like, "Don't ask me."

I was happy to see that Mom felt so good. I didn't want her to feel bad, but this was unnerving. I'd liken it to seeing a parent intoxicated, the disinhibition was unnatural.

It's interesting as I recollect talking to people who had spoken with her in those couple weeks after her first cycle of chemo. People thought she was hilarious, she sounded so good. It was talking to my brother Sean when he described it best, "She sounds good, a bit high, but good." That's exactly what it was, she was high off the medications. It turns out they had switched her Norco to long acting morphine as well as given her high doses of IV steroids with the chemo. The medications were causing her to act this way. They were masking her pain, masking the effects of the chemo. Coupled with the fact Pat Sexton didn't believe chemo would get her down she felt on top of the world. Chemo was a breeze I'm sure she thought.

During the visit she calmed down a bit, we were able to take some pictures I will always treasure.

It was a good visit. I was glad she felt so good. But I was a bit scared too, I was scared this was how my Mom was going to be from now on. She felt good, she was elated, on top of the world, but she wasn't acting like my Mom. 

Mom Starts Chemo & Lydia Is Born

Mom was set to start chemo Tuesday June 3, 2014. She was to be there at 10 AM and was told to expect to be there 4 or 5 hours. I woke up that morning just having turned 36 weeks pregnant. Although I've never posted them because things were so hectic around Lydia's birth, I had taken weekly pictures of my pregnancy. It was something I thought was trivial when I was pregnant with Amelia so I didn't do them. I regret that, if for nothing else, you can't get back pictures that were never taken. So it was something I decided to do with Lydia. I snapped this picture that morning.

I went to work and just felt exhausted. This pregnancy was so much harder than with Amelia most likely because of Amelia. It was hard to keep up with her. I felt short of breath so easily. I had this same symptom with Amelia but at least then I could rest whenever I wanted. Physically though, I really was fine. The pregnancy had been perfect, not one single problem. But that morning I was so tired. I had a c-section scheduled for June 23...3 weeks away. I wondered how I'd make it. With Amelia, I had went to 41 weeks and had to be induced ultimately ending in an emergency c-section. That girl did not want to come out. Even at 41 weeks, I didn't want to be induced, I cried on the way to the hospital.  It was not because I feared induction, but Amelia and I were doing just fine. I felt unprepared for the uncertainty of having a newborn and I just enjoyed being pregnant. However, with Lydia, I was done. I was tired of being pregnant. How in the world did I last 41 weeks with Amelia? That said, it never once crossed my mind Lydia would come early. She was due July 1, c-section was June 23, that's when she would be born, the end. 

At work that morning, I actually asked the nurse to bring a couple of the patients to me instead of me walking to see them. I told another nurse I was absolutely not having any more children.  I was DONE. I wanted to be on maternity leave. I had planned this pregnancy hoping I would be on maternity leave during the summer.  I had jokingly made a pregnancy pact with one of my good Marchie Mom friends and it had actually worked out! We both had March 2012 babies and now we were both going to have July(ish) babies!

Jennifer lives in Georgia and we met on the internet in a March 2012 Moms' group. She lost her mom when she was 18 to pancreatic cancer. She has been one of my biggest supporters and confidants through the loss of my Mom.

I had texted my Mom that morning and then she texted an update about 11:30 AM.

Ugh, come on, why hadn't it started yet? It was supposed to start at 10 and was almost running two hours behind. I really wanted to be there with her but I felt secure in knowing that Aunt Pat was with her. 

At lunch, I went to Jason's Deli and then stopped at Buy Buy Baby to buy an extra car seat base that we needed and one of my beloved Halo fleece swaddle sleepsacks that makes Davis newborn babies sleep so well. 

I went to Westminster for the second part of my work day. I went to go see a patient and then went to the bathroom. I'll spare the details but essentially my water broke while I was using the bathroom. Let me tell you, that is really confusing. I actually assumed I'd just reached that point in pregnancy where I'd officially become incontinent. I was short of breath, exhausted, and now peeing on myself...splendid. I went to go see another patient before deciding maybe I should have this checked out. I felt embarrassed I was now that girl who couldn't tell if her water had broken or if she was just peeing on herself. It was about 3 PM and my logical mind told to get in to see my doctor before they closed. I didn't want to end up at the ER waiting if this was the real deal. 

I stopped one of my favorite nurses and told her what was going on.  I said, "But I'm sure I'll be back Bella, I'll finish my work." She told me, "No honey, if it's not, just go on home and rest." I tried to call Spencer but he didn't answer. The person I really wanted to call was my Mom, but I couldn't, she was at chemo. I remember thinking that I had no one to call and tell them about this silly predicament I was in. So I told my online friends.  One said, "You're 36 weeks, it'll be ok right?" Whoa...it hadn't even crossed my mind this was early, Lydia was not full term yet. Honestly the only thing I had thought of was that maybe I was done with work for 12 weeks! 

I went to my OB's office embarrassingly telling them the story. Lo and behold, it turns out it was my water that had broken. I was still unable to get ahold of Spencer. They walked me over to the labor and delivery unit and put me in a room. I thought hmm what do I do now? How was this going to work out? How was Spencer going to get here should I be able to get ahold of him? He had Amelia and Kristina was at work. I decided to call my friend Asheley and had her go to the house so she would be able to relieve Spencer until Kristina got off work. I was finally able to get ahold of Spencer to tell him the plan. I remember I had to take a couple work calls while the nurse was hooking me up to equipment. It was a busy afternoon. I finally texted my Mom.

I was worried she'd insist on coming to Indianapolis to see me and I didn't want that. She needed to rest from chemo. She had been there for Amelia's birth through the whole grueling ordeal it was from 8 AM March 29, 2012 until 4 AM on March 30. I had intended it to just be Spencer and I during the delivery but I screamed for my Mom when the pain became unbearable. I needed my Mom. She had intended to be there for Lydia's c-section as well. 

She didn't respond to my text so I called her and let her know what was going on and that I was okay. Even though I was the one having surgery, I felt like I needed to make sure everyone else was okay, that everything was in place and everyone was taken care of. 

The c-section was scheduled for 8 PM since I had eaten at noon. They told me it was likely Lydia would need to go to the NICU. They wheeled me back to the surgical suite and began the process. Although I had been through this with Amelia, I was not cognizant of the process. With Amelia I was wheeled into the OR screaming, hoping and praying someone would put me out of the misery trying to have a vaginal delivery had been. I think I was delirious and have little recollection of the experience. But with Lydia it was different. Even though it was still an "emergency" everything was much calmer. I laid on the table and they got started. I did feel scared, it's unnerving to be awake during surgery. I wished my Mom was there, oh how I wished she was there. I got sick, but the anesthesiologist gave me medication and the feeling disappeared. They continued with the procedure and I listened to the radio. It was taking longer than I had anticipated. Finally they told me they were almost ready. Lydia was about to be born. We were about to meet her. And at that moment Tim McGraw's Live Like You Were Dying came on the radio. As cheesy as it probably is, that song had resonated with me this past month as my Mom's cancer story unfolded. 

He said I was in my early 40s,

With a lot of life before me,

When a moment came and stopped me on a dime.

I spent most of the next days, looking at the x-rays,

Talking about the options and talking about sweet time.

I asked him when it sank in, 

That this might really be the real end,

How's it hit you when you get that kind of news?

Man, what'd you do?

And he said,

I went skydiving,

I went Rocky Mountain climbing,

I went two point seven seconds on a bull named Fu Man Chu.

And I loved deeper

And I spoke sweeter

And I gave forgiveness I'd been denying

And he said, Someday I hope you get the chance

To live like you were dying

I started crying, the moment was perfect, absolutely perfect. My Mom had started chemo and Lydia was born. It felt like an exchange, a bad for a good. A trade. It was going to be okay. No matter what, everything was going to be okay. 

They brought me my beautiful little Lydia for a brief moment before whisking her away to the NICU. I was okay with that. She was 5 lbs 8 oz 18.9 inches long, good for a preemie. She looked good they told me, they just wanted to monitor her. Spencer had gotten a better look at her than I had. I said, "Does she look like Amelia?" He said, "Yes, yes she does." 

I don't know why Lydia came a month early...maybe I was stressed, maybe I was finally not stressed with Aunt Pat there. I like to think though that she came early to spend more time with her Mams though. Today was Game Day for Mom and Lydia knew we needed to hit the ground running. "Let's get this show on the road," she said. Everything had turned out perfectly, I felt euphoric that night. My Mom posted this on Facebook:

Aunt Pat Comes To Town

On June 1, 2014, our Aunt Pat came into town.  As I mentioned in my Memorial Day post, Aunt Pat is not really our aunt, she was my Mom's best friend. They met at First Baptist Church when my Mom was in her 20s. I have many fond memories of my Aunt Pat when I was little. Aunt Pat = Fun. She lived just down the road from us and spent a lot of time with us including birthdays, holidays, and vacations. She was a part of our family.

I remember times when we would be dropped off at Aunt Pat's as my parents went out and my Mom saying, "Now Pat, don't take them out to eat." She would say okay and we'd all wave good-bye. She'd shut the door, turn around and say, "Ok kids where do you want to go to eat?" She also had a way of softening my Mom's temper when she would become upset. I remember them reminiscing about a story last summer when many years ago Aunt Pat had come over to the house and Mom was upset. Aunt Pat said, "Hi!" and my Mom turned around and threw a plate at her. Aunt Pat caught it in her hand, laid in down on the table, and said, "Ok kids let's go find somewhere to eat!" It's probably good Aunt Pat moved away when I was young or else I would probably weigh 400 lbs today.

When I was in second grade Aunt Pat met a man, Chuck, who lived in Florida. They were married and Aunt Pat moved to Florida with him. Aunt Pat moved away February 9, 1991. I still remember that day, helping her pack things when it was still dark outside.  After she left, my Mom took me to get my ears pierced that afternoon. I think she was trying to ease the sadness that Aunt Pat was gone.

I think this picture was likely taken right before she left. I know that was the vest I wore in my 2nd grade picture.

I remember Aunt Pat and Chuck came back to visit when I was in 3rd grade and then it was a long time before we saw her again. Sadly, Chuck was diagnosed with cancer and died not too long after. I remember that I felt Chuck had already "stolen" our Aunt Pat and now that he had died she was alone down there and we were still without her. This upset me. I didn't understand why Aunt Pat couldn't just come back. I didn't understand all the intricacies of moving when I was that young. I don't think we saw Aunt Pat again until I was in 7th grade when we went to Disney World.

Fortunately after that period, we were able to see Aunt Pat on a more consistent basis. Her arrival was usually a surprise to us kids. She liked surprises. She tried her best to show up for important events if she was able. I was always filled with excitement when I knew Aunt Pat was coming, even more so when I would see her pull up in our driveway unexpectedly.

In 2011 I believe it was, 20 years after she left, Aunt Pat was able to move home.  Unfortunately for us, home for Aunt Pat was Glencoe, Ohio where her family was. Still, at least this was much closer than Florida.

She came that Sunday to be with Mom for chemo. My brothers and I were relieved. Temporarily, we had a solution of someone to care for Mom. I thought Aunt Pat was only staying for her first cycle of chemo, I didn't realize at the time that she intended to stay through it all. We would ask her how long she planned to stay and she would answer, "Oh I don't know, we'll see." That was Aunt Pat. She is one of the most selfless people I know. She gives so much of herself to others, probably more than she should.

That afternoon, Spencer, Amelia, and I drove up to Muncie to Mom's apartment. Ryan, Carly, Graison, and Lucas drove down from Roanoke and we waited on Aunt Pat. She arrived with her good friend Joy and Joy's son Shannon.  We had intended for the kids to go swimming in the apartment pool but unfortunately it hadn't opened yet. Mom's apartment was packed and kids were running everywhere. We got ordered food from Pizza King (of course!) and as usual Aunt Pat insisted on paying and ordered way too much food. 

That afternoon was joyful, full of love. We were so happy. We were not afraid that Mom was going to start chemo in two days, there was no air of sadness. We were exuberant. Aunt Pat had come to town and Mom was going to fight cancer.

Radiation Oncologist: A Hard Day

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.

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."

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 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.

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.