Saturday, January 30, 2016

How will I know you're there?

"This is the first time in I don't know how long that I haven't been in charge of something. It's awesome." Then she paused and added, "Although this isn't how I would've liked for  it to happen."

My mom told me that while I was sitting with her today. I caught a flight from Texas this morning and arrived in Payson late this afternoon amid a drizzling chill rain and imminent threat of snow. She smiled when she saw me and held her arm out wide for a big hug, which I was glad to both give and receive. I love being here with her; all of this seems manageable when I'm here with her. A dear friend and surrogate mother of mine texted me earlier this week and said, "Hi Angie, just wanted you to know I was with your mom this morning, and it was amazing. I love her so much. The amazing spirit and peace that is all around her is so tangible I can almost see it with my eyes and taste on my tongue. Once again Sara is teaching me how to do a very hard thing with dignity and courage. She is and always will be my friend, my sister and my hero."

I'm telling you this now, jumping so far ahead in the narrative, because I want you to feel the peace and know the positive as we go through this next part of the story. I can't say any part is really the hardest, because we haven't been through the whole of it yet, but I've been avoiding writing about after she had surgery.

When the med techs brought her out of the operating room she was very disoriented and frankly quite alarming to look at. But she was there, and we hurried to be near her. They took her to the Neuro Shock Trauma ICU and set her up with a room and a med tech to stay with her the whole first night. It wasn't a very comforting room, but it likely wasn't designed with comfort as a primary goal. There was a large pillar in the center with electric outlets from which hung many cords and dark monitors in varying colors of charcoal and cream. The walls were blank and windowless, and the shape of the room felt strange and disjointed because of walls that stuck out and cabinets in odd places and everything was pale grey or stark white. Add to all that the weird lighting of flashing computer panels and the ambiance of tension from the gravely ill or severely injured and the place felt like nothing so much as the wampa cave on the ice planet Hoth.

My mom was anxious and still mostly under the anesthesia. She continuously grabbed my father's hand over and over and repeated, "You stay. You stay." We reassured her as best we could that yes, he was going to stay. I couldn't tell what was surgical damage and what was surgical trauma at this point, but it was getting late and I had a flight back to Texas incredibly early the next morning. I would need to wait and get news from other sources.

I made it back home without incident and updated my husband. Then I went to sleep. Over the next several days I called and texted and video chatted my sister, my brother, my aunts and my dad to get more news from them about my mother and everything the surgeon had said. He had removed every cancerous cell he could find with this microscope. Good news. The center line of her brain had shifted. Bad news. They were able to place the entire glio-wafer (targeted chemo) in the empty space where the larger tumor had been. Good news. She couldn't see out of her left eye. Bad news. She couldn't turn her head to the left. Bad news. She had total left side neglect. Bad news. She would likely never regain the use of her left side. No walking. No standing.

No way. My mom had, for months now, been getting weaker and saying that food was not her friend. Ciera learned that one of the first things cancer attacks is your appetite, trying to prevent you from ingesting enough calories to keep your body strong and functional. Ciera told my parents this interesting fact, and from then on we reinforced that cancer was lying to her and food was necessary. She made a valiant effort and started eating more. She was exhausted all the time and the physical therapy they wanted her to do was incredibly difficult and disheartening. Bryant, my brother-in-law, gave her what has affectionately become known as the "cowboy up" speech, and I hope if I'm ever in a situation like she is that someone will care enough to talk to me like this. "You fight this, Sara," he said, "you fight this every moment of every day. When they bring you food and you don't want it, you remember that's cancer lying. When they take you to do your physical therapy and you don't want to do it any more, you take another step because you are a fighter. You can beat this, because you can do anything."

It was much longer, and completely from the heart, but that was the main theme. It is worth pointing out that Bryant has been my brother-in-law for more of my life than he hasn't been, so although he technically is my brother-in-law he is more brother than in-law. And the speech was very effective, because afterwards whenever my mother finished her entire breakfast she would have my dad take a picture and say, "Tell Bryant I'm fighting," Or when I was assisting her in her initial physical therapy (which was both difficult for her and those assisting her) she would pause for a break and then say, "Just one more step. I'm fighting."

After some difficulty getting the insurance companies and the hospital and the Acute Inpatient Rehab facility on the same page, my mom was transferred from ICU to the 4th floor (for Christmas, as described in the previous post) and then to the Acute Inpatient Rehab on the 3rd floor of the hospital. This was my favorite of all the places she stayed, because the staff and those in charge of her treatment seemed to be the kindest and most willing to answer questions.   This was also the place where the most changed for her, and for all of us after the initial diagnosis.

She had 3 kinds of therapy 5 times a day. Physical, occupational, and speech therapy all covered very distinct aspects of daily life: standing and walking, activities of daily life, and thinking and cognitive skills were all covered. The physical therapist team was my favorite. In addition to helping her regain strength and control of her body, they also gave instruction and classes to each of us who were going to be helping to take care of her. Their job, as they explained it to me, was to prepare her to go home.

She wanted to go home. We all wanted her to come home. But there was a small problem; my parents' house, although excellently and tastefully decorated, is THE WORST for anyone with physical limitations. There are stairs everywhere, including to get into the house. There are two bathrooms on the second floor and a third in the basement, but none on the main floor. Even the main floor is separated into two separate parts with stairs dividing them. Mom could either be on a floor with a bedroom and a bathroom, or be on a floor with access to food and water and the outdoors.

One of the many things we'd discussed during the Christmas vacation when we were all together was the possibility of building an addition on the main floor of my parents' house. It was all the rage in their neighborhood anyway- two neighbors had already built large additions to their houses and a third was in process, and that was only on her street. Doing more seemed easy. The six of us (three siblings and three spouses) debated and designed a brand new ground floor master suite for my parents, and I sent the design on to an uncle who was a general contractor by profession.
This idea stalled out somewhat when I asked her surgeon if he thought it would be a good idea. He hesitated, and then recommended against it. He again indirectly referred to the answer to the last question none of us had asked by saying we should hold off on doing anything, because it would take too long.

No, I didn't ask him how long would be too long. I thanked him for his recommendation and moved on. And I suppressed even the possibility of what he was suggesting. So far everything had been positive, time with my siblings and my family had been fun, and we had enjoyed our time together.

We drove back home after Christmas break so the kids could start school again and I could go back to work. Or at least try. Monday was all right, but Tuesday I went to work early. I felt fine getting ready, and fine going to work. Once I got to work that morning my boss pulled me aside and started to go through with me all the issues and problems that'd come up while I was away. My stomach started to hurt. Then it hurt more. There are always issues and problems at my work that are my responsibility to manage, that's my job security. But in about 3 hours of being at work that Tuesday I had gone from feeling completely fine to feeling so ill I abandoned them all and went home.

I arrived home just in time to run to the bathroom and grab a bowl and then proceeded over the next half hour to purge my body of everything I've ever eaten. I'll spare you the details, but between weighing myself Tuesday morning and weighing myself Thursday morning I'd lost ten pounds. Once I'd finished in the bathroom, my most excellent husband cleaned me up and put me to bed where I slept the rest of the day.

That night I got a phone call from my dad, where he asked me to go and get Will. This, for any of you who don't know, is a very bad sign. Good news they will tell me immediately and leave it to me to pass along to my husband. Bad news they give him first to prepare him, and then call me and make sure he's with me.

My parents that morning had spoken with the hospital social worker and the neuropsychologist. I'd wanted her to talk to the neuropsychologist much earlier in all this, because part of his responsibilities at the hospital were to help patients with terminal or potentially terminal diagnoses understand their care and options. Better late than never, I guess, or so I've been told.

He had outlined their options for treatment and the likely result of each. My mom had been laboring under the assumption that she had no say in her care and treatment, but that she just had to do whatever the doctors said and take whatever medication they prescribed. The neuropsychologist let her know that no, this was her treatment and she could choose what she wanted. My mom had been dreading the chemotherapy and radiation because she HATES feeling nauseated (see previous posts). The neuropsychologist explained that with chemo and radiation she would probably have five months, maybe six left, but she would feel sick all the time with not a high probability of success. Without chemo and radiation she would have maybe three months, but she would be herself. Although it would be uncomfortable at times, she would feel well for most of it.

Five months of the thing she hates most in the world or three months of being herself, and they chose the latter. That's what they were calling to tell me, that my mom had decided to forgo the chemotherapy and radiation to fight the cancer growing in her brain. That was the reason her surgeon had said the addition to the house would take too long. No doctor can predict with accuracy how long someone has left in these situations, but we needed to start preparing ourselves for the reality of my mom passing away. People survive cancer; people even survive glioblastoma multiforme stage IV. But not usually, and not without treatment.

This was the post I've been putting off, the one I've been trying to deal with. Every prayer, every miracle thus far had been about getting her better. Every blessing, every moment of peace had been feeding that belief that she was going to get better, to be okay. Every one except the very first one I'd had; that first Saturday in December when I'd gone to the temple and prayed about her the entire time and gotten three separate and distinct impressions. 1. Everything is going to be okay. 2. Everyone will have peace. And then 3, He needs her. Every time I reflect on that last one the emphasis gets stronger. He NEEDS her.

Which is understandable- we all need her. Have you met my mom? She's amazing. And the most incredible thing about her is how is always deflects the credit to someone else. She never wants to be in the limelight or the center of attention. My mom wants everyone to feel good about themselves all the time, to spread the accolades and to make sure everyone else feels LOVED. That's been her whole life, focused outward in service and reluctant leadership.

Now she isn't in charge of anything, and none of us know how long we have left with her. The hospital says 3 months. Her surgeon, when I finally swallowed my heart back down into my chest and talked to him about it, said that without the surgery she would already be gone. We still aren't up to current in the story; we need to talk about the rest of her time in physical therapy and what we all learned there. We need to talk about her roommate and what changes we made to the house before she got home, and the most important pieces of advice the head physical therapist told us before we left. We've barely begun to talk about all the things we've learned and questions we've had answered. There is still plenty of the story left to go.

This part is important because this is the moment where everything changed. The pivotal point where, "What's it going to take to get her better," became, "How are we going to say goodbye?" I wrote a whole other paragraph after this, but I deleted it because it was just a little too much of a personal pity party. She's still here. She will always be my mom. Life isn't going to happen the way I expected, and that's going to hurt because I love her so much. The pain then is part of the happiness now, as C. S. Lewis said. She's dealing with all of that too. She hates when people come to see her and cry. It makes her feel both awful and self conscious. She hates being the center of so much attention. And she hates thinking how much she's going to miss us, and how she's going to make everyone so sad.

But it isn't over yet, not for any of us. We still have time with my mom now because of the promise that surgery was the right choice at the right time. And I still have almost a month of events to catch you all up on. So remember, as my mom says, everything will turn out okay in the end, and if it's not okay, it's not the end.









Saturday, January 23, 2016

Do they even know it's Christmas time at all?

Sorry for the delay in posting- many things have changed over the last few days. You know from my sister's post that my mom is home now, but that isn't where we are in the story yet. I'm home too, which if any of you don't know, that means I'm north of Houston, Texas, in an area called The Woodlands. You should look it up online, it's beautiful.

And totally irrelevant here. My mother had dangerous, intensive brain surgery on December 17th, 2015. Before she went in she asked me to tell my sister-in-law "Happy Birthday" the next day for her, because she wasn't sure if she'd remember. She went into surgery at about 2pm, and we sat in the corner of the waiting room. We had all her stuff from the room upstairs, even her tree, on a large grey cart next to us.

Her tree; I don't think we've talked about her tree yet. While she was still staying at home, before the diagnosis of December 14th, she was weak enough to be mostly bedridden. I'd come out from Texas to take care of her after her biopsy. Saying "biopsy" is somewhat misleading- it makes people think of long needles inserted into organs and tiny tissue samples being removed. While it was true there was a long needle and there were many tiny samples removed, "biopsy" in this instance fails to convey two vital pieces of information. One, that to get to the tissue to be biopsied the surgeon needed to drill a hole through her skull. Two, that to drill the hole and insert the needle, her head needed to be completely motionless because they were inserting a needle so deeply in her brain it was almost to the center line.

The recovery from this kind of biopsy is more intense than any other type, and it was after the biopsy that she started having the weakness and numbness in her left hand and left leg. So mostly she stayed up in her room in bed. This was a very hard time for her- for all of us, sure, but especially for her. If you've never had something seriously wrong with you physically but not known what it is, I can't think of a way to help you understand.

Try to imagine that you're walking down a long hallway by yourself, and you suddenly hear footsteps behind you where there shouldn't be any. You look behind you, but nothing is there. So you keep walking. You can still hear the footsteps following you. You start to run until you're out of breath, but when you pause to rest, the footsteps are still there. Not any faster or slower than before, just there. But maybe a little closer than before. Who's behind you? You can't see anybody; you just hear the footsteps. It could be someone walking, just like you are. But it could be someone dangerous, someone hunting you. But you don't know.

So you keep walking. You look back once in a while, but you don't see anything. Sometimes the footsteps; sometimes they seem closer. Sometimes further away. You wish that whoever, whatever it was would just show up already so you could see them, but at the same time, you know if they're close enough for you to see they're close enough to see you and that could go very, very badly. You may wonder if you're going crazy, if the footsteps are even real or if you're imagining them. But slowly, so slowly it's hard to notice, the footsteps are getting louder.

That's kind of what it feels like, when you're body is falling apart and you don't know why. When you know the answers are coming and you both want them and are afraid to hear them. And you wonder if you're being ridiculous and weak and it's nothing but all in your head.

Which, as an aside, is a pretty accurate phrase. Glioblastoma multiforme, brain cancer, is all in your head. It doesn't go anywhere but your brain. But things that affect your brain affect your whole body. There's no where more dangerous, more pernicious to have something go wrong than all in your head.

This was where my mom was, emotionally and physically, the second week in December that I spent with her. I knew something of how she felt because I'd gone through two years of trying to figure out what my problem was medically before I found answers that made sense. It's incredibly depressing. It occurred to me one day that my mom loves Christmas, but all the decorations were downstairs where she couldn't see them. Being a person of more action than thought I went immediately to Walmart and bought her a fake 3 foot tall pre-lit fake pine tree and brought it home to set up in her room. When I came in with it, she looked startled. "Oh," she said, "I'd almost forgotten it was Christmas."

My heart fractured more at this than any other single thing thus far. She'd almost FORGOTTEN it was CHRISTMAS?!? This woman, my mother, who played Christmas music nonstop from Thanksgiving through New Year's Day every year of my life so far, who started shopping for next Christmas from after-Christmas sales, who started planning and coordinating all of our Christmas vacation plans when school let out for the summer, was having such a difficult and stressful time that from where she was, she couldn't even see Christmas right now.

Here was something up with which I would not put. My mother was NOT going to be denied Christmas. I set up the tree on her window box seat where she would see it every time she woke up, and last thing before falling asleep. But it was just a tree; I needed decorations. I called a wonderful and dear friend (not coincidentally the same friend who directed the making of the surgery survival care package) for help. I will love her forever, because she drove from Eagle Mountain to my parents' house in Payson with a box of homemade decorations. She came upstairs to my mom's room and decorated that little tree. Then she drove back home. For reference, that's over an hour drive each way just to spend fifteen minutes helping give my mom some Christmas normalcy.

That tree has followed my mom everywhere since. When she got the diagnosis and was admitted to the hospital, we set it up in her hospital room. After surgery and since it was a fake tree, it followed her into the ICU. It was the only Christmas tree and nearly the only Christmas decoration in the entire Intensive Care Unit, and so the staff asked if they could put it up in her room near the front window so everyone walking by could see it. It followed her out of the ICU and back onto the 4th floor neurosurgery unit, where we stood in a circle around my mom on Christmas Day and sang Christmas carols. It went with her to rehab, and home with her, even though Christmas had passed. No matter what, my siblings and my father and I have made sure she did not forget Christmas again. Even though the meaning of the tree has changed somewhat now.

The "M for Sara's Miracle" movement that my aunt created began after she'd had surgery but before Christmas. There are thousands of people praying for my mom, and my aunt wanted a way for her to feel their love and support. That started in a text on Wednesday, December 23rd. The text message read: "I am getting the word out for family, friends... or anyone who desires and we have has to pray for Sara to go to Hobby Lobby or Michaels or somewhere else and buy a letter "M" for miracle.  Have them sign the back and we flood her room with M's because she can't have flowers or fruit in her room.  Miracles have already happened but this a reminder we need the big healing miracle which is Sara's request."

Within days my mom's room was flooded with "M"s signed with supportive notes and messages. Some of them were even "M" garlands and ornaments, so we decorated the tree with those, too. Now it isn't only a small Christmas tree, it's a miracle tree, which I think is a little redundant because Christmas is already about miracles. But a little redundancy can be good for emphasis.

Even though she was supposed to be in the ICU for up to 10 days, her surgeon had her transferred to the 4th floor on the morning of December 25th. There were some visiting restrictions for the hospital in general, but the ICU only allows 2 people at a time, and when he had her transferred he told the nursing staff, "You let her have anyone and anything in her room that she wants. No exceptions."

So on Christmas Day, in the evening, we ALL went to see my mom. My whole family, my brother and his wife, my dad, and my sister, her family, their tiny mop dog and their new puppy. Yep. We brought her a puppy to play with on Christmas. We stood in a lopsided circle with her at the head and sang Christmas songs; some were even the nice ones. We all gave her hugs and talked and laughed and just enjoyed all being together. We were pretty loud and a little obnoxious and very welcoming, just like my mom's surgeon had expected so he'd had the nursing staff put us at the very end of a mostly patient-free hallway so we wouldn't disturb anyone else, and made sure the nursing staff knew to tell us that up front.

I like her surgeon.

My mom had her Christmas tree, and presents, and her whole family plus some extra furry ones on Christmas Day. I know this post is a month or so late, but in my defense we finally got our last Christmas present in the mail yesterday so I feel like we're right on schedule.



Tuesday, January 19, 2016

And the home that you find isn't the home you had in mind

A few days ago my mom got to come home from the hospital.  With lots of help from Bryant and my friends I was able to go home as well and arrived a few hours after she got there.

The view of my parent’s room, which had always been pretty constant except for a few decor changes since I was 13, had drastically changed.  The week before when my family, my sister, and my brother’s family, and some friends had changed the house to accommodate my mother’s return to her house after staying so long in the hospital.  She need space for a hospital bed and a wheel chair and other things to help her.  We took the storage room and turned it into a bed room with my parents king sized bed being moved down there while a twin bed for my dad and space for the hospital bed took over their room. Even getting in the house was no small task, since a wheel chair ramp would be needed, a way to get in the shower, and several people to help get it upstairs since the house was a split level with the master on the upper most floor.  Wonderful people from my parents’ ward helped make a ramp in the garage and did a quick remodel to the master bath and shower to make them more accessible for her.  All this was done in the space of 3 days and perfectly ready and cleaned by yet more friends for her arrival. 

The travel from the hospital and transition to her bedroom was exhausting for her.  My dad and my brother had been there to help her the whole time and had gotten her settled for the time being.  When I walked in the room, she was there in the hospital bed among a nest of pillows.  The bed looked surprisingly comfortable and her eyes were closed.  I went to greet her and she opened her eyes and we talked for a bit and my 2 dogs wanted to lay with her too.  They had to take turns, of course, since our older small dog hates our new young puppy.  My mom was concerned about them not getting along, but I told her it would just take time. Between the 2 of them she almost always had some doggy to snuggle, which she loves to do. 

She and my dad were both happy and grateful for the renovations and how they made it possible for her to come home.  

We spent the afternoon of that first day quietly visiting.  My Aunt Jeanne, my dad’s sister, had brought dinner.  During that first afternoon home my mom asked my brother to give her and my dad each blessing.  The four of us gathered in my parent’s room.   My brother, Stephen, was happy to do it and gave them both beautiful blessings, promising the help of angels and that they were being watched over and were never being left alone, even at that moment.  As he was speaking, I felt the spirit flood over me.  Then I felt a light slim hand on my shoulder.  Tears crested my eyes and I knew without a shadow of a doubt that we were being watched over and that the veil that separates us from Heaven was and is very thin in my mother’s presence.
My brother left around dinner time and I brought my parents food up for them. They ate together, my mom with a breakfast tray across her lap and my dad either holding his plate or using a TV tray that was nearby.  This is how they ate mostly every meal.  I’d bring it up and they’d eat and I’d take the plates back down to the kitchen to clean up.  My mom commented that eating is really the only normal thing she gets to do, so I wanted to make them food they liked and then I’d freeze it so they could re-heat it when they needed it.

I made a list and went to the store and tried to stock them back up.  In between cooking, freezing meals, and doing the dishes, I tried to get their laundry going as well.  Family and friends had heard she had come home and were starting to trickle by throughout the weekend.  We visited all visited and I tried to visit with my parents too.  I mostly wanted to talk about their needs and what I could do to fulfill those.  Like I said before, I hate to cry, and so I focused on moving around, getting things done, and talking about light things with my parents.  My mom didn’t really want to get out of bed.  She was just so very tired.  Being at home and not in the constant bustle of the hospital gave her that peace to just sleep. 

In the afternoon I took my pup out for a walk.  The house we lived in from when I was 5-13 was only a few blocks away so we walked that way.  It was cold, but not too cold compared to WY, and the air was still.  The sky was grey and everything was muffled by the snow that had fallen the night before.  Even though it was mid-day the streets were quiet as well.  Memories came from around every corner as we walked undisturbed through the snow.  The first church building I really remember is the one where my parents still attend, half a block from their house.  Looking at it as I walked by I remembered so many times as a child walking there with my parents and siblings on warm sunny days for church or other activities.

The snowy parking lots reminded me of when my mom took me there to teach me how to get out of a fish tail or stop sliding when driving on snowy roads before the lots were plowed and I was learning to drive.  We screamed and squealed and had a great time.  Then the thoughts of what the future in that building would hold, my mother’s funeral.  We don’t know when, but the inventible doesn’t give us a timetable and in reality none of us know when our time will come.

There’s a junior high across the street from the church now, but it used to be a field.  I thought about all the times my sister and friends and I would walk home from school through the field.  I thought about the neighbors that used to live across the street and wondered if any of them still lived there.  As I neared out old neighborhood I noticed that the houses that were still there looked exactly the same, but time had taken its toll.  It seemed that they hadn’t been kept up at all and were getting pretty run down. As I walked past my best friend’s family house, I couldn't even count the memories that jumbled in my mind walking past.  I got to where we used to live, the trees were half dead, the fence was breaking, the shutters sagged, and a car was parked on the front lawn.  I saw past it in my mind’s eye and saw my whole family young and healthy and caring for that house and what is used to be like full of life and happiness. 

At this point my, not so little, pup started to whine because her feet were getting cold so we headed back.

That evening Stephen and Judy came over for dinner and we ate on a card table in my parents’ room with them we chatted together until my mom fell asleep.  We all left the room quietly and cleaned up.  Stephen and Judy visited with me a bit longer then headed home themselves. 

It was a quiet and peaceful few days that I am so grateful I got to be a part of.  I got a lot of cooking and laundry done and helped my parents, it felt good.

My family came Saturday after my son Bryson had finished playing basketball in Lyman.  He’d had a fun day there and his team had won their division.  They brought energy and excitement into the house.  My mom loved every minute we got to spend together.  We got take out from the various favorite places in town and Bryant and my dad brought my mom into the kitchen to eat with us.  It was so great to all be at the table again, but being out of bed for so long tired out my mom.  We helped her back upstairs and Caringtyn spent the rest of the evening making herself at home in the hospital bed with grandma.  They cuddled and talked and Caringytn was her bubbly silly self.  The kids spent every second they could with her riding on the wheel chair in the room and being loud and having fun until bed time.

Sunday we decided to have sacrament meeting with my parents in their room since her ward was bringing the sacrament to her.  Stephen and Judy came again and we all dressed in Sunday best.  My dad had asked Bryant to conduct.  We had opening prayer and song and Caringtyn give a cute little talk.  We then took turns bearing our testimonies and the spirit was so very strong again.  Tears came to our eyes and voices again and it was a special experience.  My mom wasn’t able to bear her testimony at the time because she was overcome with emotion, but I hope to get that on tape later.  The rest of the day Bryson and Caringtyn took turns lying beside her in bed and Ashelynn visited with her too.  We left that evening around 5 because we had to get home to school and work, but promised to be back in 2 weeks.

I can’t remember which day, but I was talking with my mom.  She pointed to the heavens and said, “I’m really going to have some questions.”  I said, “I bet you do. Take Kona with you when you go to ask and have her sit by you.”  It was light of course, because that is how I deal with complex emotions most of the time, unless I’m alone.  This was just a small verbalization on her part of the internal struggle she was going through, and rightly so.  She also mentioned to my kids that she felt like Rip Van Winkle; she’d fallen asleep and woke up an elderly person.  They didn’t quite get the reference, but I did.  She had been one of the most active and physically strong women I’d ever known, loving the hard earthy work of gardening and willing to help anyone move anything.  Now, suddenly, she wasn’t able to even stand without significant assistance.  I’ve seen my mom cry on occasion, but even now it wasn't that often; she was still a pillar of spiritual strength, but her wrestle with the spirit versus the flesh was taking its toll.

I may not know why this trial, why my mom, but I do know that my faith and conviction about the love the Lord has for each of us has been strengthened.  I know even more so, that Heaven is real and closer than we know.  I know that the trails we face in life have purpose beyond my own limited understanding.  I trust even more in the love our God has for us, I have felt it so strongly.  I have seen it in my mother and father’s eyes.  Their legacy of faith is my responsibility to pass on.


Sunday, January 17, 2016

I get by with a little help from my friends

Text message from my father to his siblings, 12/15/2015:
The MRI showed both tumors larger than they were 2 weeks ago.  The doctors have determined to do surgery Thursday.  The tumors can't be completely removed by surgery, as they have many "fingers" that grow out in all directions.  Surgery will cut out much of each tumor, so that the radiation and chemo have less mass to work on.  More info later.  Thanks.  

My dad sent that out after our family council experience, the first one we had all attended and weighed in on. After the family council my sister had to leave to drive back to her family in Wyoming. I felt like it was okay for me to leave too, but I didn't. I didn't want to. I was determined to stay until after she came out of surgery so I could be with my dad while we waited. 

I felt guilty, though, because the peace I'd received during the prayers and decision making were still with me, but there were so many others who love her who didn't have that. I took many phone calls and text messages during this time between the decision and the surgery. Everyone was worried. Everyone wanted to show their support. Everyone asked how I was doing with such love and fear that I felt silly saying, "I'm fine," even though it was true. My Grandpa Newman came to visit my mom every day. My dad rarely left her side, and never for longer than was absolutely necessary. 

Text message update from my dad to his siblings, 12/16/2015:
Surgery for Sara will be tomorrow at noon, and will last about 5 hours, then recovery will take a while.  So I won't know really much until later in the evening.  More updates then.  Thanks all.  

The thing my mom decided to worry about was her bangs. They were going to have to shave her head for the surgery, and she was VERY unhappy about it. She'd had her hair cut short once when she was maybe 9 or 10. It was a short pixie cut, made popular at that time by the model Twiggy. My mom loathed the haircut, mostly because people kept assuming she was a boy! From the moment it grew back she never had her hair shorter than her shoulder blades again. 

And now they were going to shave it all gone. My assurances that no one would think she was a boy this time were not as comforting as I'd thought they should be. But I'd come to visit from Texas after she'd had the biopsy, and I'd come prepared. I may have possibly purchased one of every kind of cute winter beanie they'd had at Charming Charlie with perhaps some matching scarves and maybe possibly bought more than one color of the ones I thought she'd like best. So she wanted to keep her bangs, to have them showing out from under the hats to look more normal. 

I learned yet something else new about my parents- my dad used to cut and style his friends' hair in high school. He took the scissors and comb I'd brought and went to work. He parted her hair to make her bangs thicker, wet the comb, and combed and snipped and straightened and shaped and did it all again. My contribution was to hold the rest of hair back and out of the way. And provide color commentary. I'm good at that. In less than ten minutes my dad has completely restyled and doubled the thickness of her bangs. My sister had braided mom's long blonde hair earlier and cut off the braid so we could keep it. Then she'd evened out the back and given my mom a bob. My dad styled the bangs to match the bob, and it looked GREAT. My dad, especially, was clearly impressed. 

The children (my brother and I) were sent home to sleep, and my dad stayed at the hospital with my mom. It was a very strange night- this was the first time I'd ever spent the night at my parents' house in Payson completely alone, without even a dog. In the dark, all alone, knowing my mom was having brain surgery the next day, I sat in the living room and stared at the Christmas tree. Christmas Eve was one week away, but my feelings were so far from Christmas Eve excitement they didn't belong in the same universe. 

Text update from my dad to his siblings 12/17/2015 #1:
Surgery actually started at 2:00 pm.  We have been told it is a 4 hour surgery, and that Dr. Gardner is meticulous, so we are expecting 5+ hours.  Then recovery, then to ICU for the next few days.  Dr. Gardner will come out and talk with us right after the surgery, before recovery, so I can let you know his news.  Thank you all for your prayers and thoughts and actions.  

Have I mentioned that I have amazing friends? One of my favorite people went through this same trial a few years ago, and she has been a huge source of strength and love. And she, her husband, her mother-in-law, and two more of my favorite people got together and made a "Brain Cancer Care Package" for us. It was incredible. Knowing that my mom loves flowers, there was a beautiful orchid. Knowing she would be going into ICU after surgery and they don't allow flowers, it was a fake orchid. But it looked real. 

There were also fruit, cheese, nuts, a huge warm and soft blanket, puzzles, board games, card games,  books, music CDs, pens, journals, gourmet popcorn, fuzzy socks, lotion, bookmarks, hand sanitizer, trail mix, candy, and more. Some of it was clearly for my mom; most of it was to keep us busy and fed while she was in surgery. All of it was well thought out, considerate, and loving. I took a ton of pictures of the care package and its contents and sent them out to my siblings to share with them the support we were receiving. My sister said, "That is a great gift." My brother said, "That does my soul good."

I brought it all with me to the hospital that morning, so we could use it while we waited. I showed my parents. They were grateful for the love of good friends, but were clearly distracted. My mom held out her hand to me and I took it and cradled it in both of mine, leaning down close to her. "I've been praying all night," she whispered to me. I nodded. "I felt that the Lord would direct the hands of the surgeon just like he did for Elder Nelson when he operated on President Kimball, and would inspire him."

I squeezed her hands and said, "Good." I kissed her forehead and then the tech asked if he could get by so he could prep my mom. I stepped back, watching her. 

"You need to tell the surgeon," the thought in my mind wasn't in my voice. I backed away from my parents and the tech to an open space on the other end of the room and looked upward.

"I guess it's a good thing I stayed, then," I countered, remembering the feeling I'd had about it being okay to go home now.

This is how I know the Lord knows me, personally. His response was perfectly tailored to me, my irreverence, and my sense of self. "Well, as long as you're going to be stubborn and stay I thought I should make use of you as mouthy. Tell the surgeon."

"I will," I closed my eyes for a moment, feeling grateful. Then I turned to the tech. "Can I speak to the doctor before the surgery?"

"I think so," he said. "Come down with us, and I'll find out." 

While he was finding out, my dad asked me what I wanted to talk to the surgeon about. I told him what mom had said, and the instructions I'd been given after. 

"Mouthy?" He blinked.

I smiled. "The word was mouthy, but the feeling of it was something closer to 'mouthpiece'." 

My dad smiled at me and wrapped his arms around me. My brother patted my shoulder. Have I mentioned my family is very soft-spoken? Sometimes I think I'm there with them for those times when someone really needs to speak up. I'm embarrassed how many years it took me to tell the difference between when it was and was not needed. 

The surgeon did come out to talk to us before the surgery, and I did get to pass on the message, after one careful question. "Do you consider yourself super religious?"

He smiled at me. "Well, I'm no General Authority, but I'm pretty religious."

That gave me all the context I needed to be able to share the message with him in a way that would make sense. When I finished, he was quiet for a moment, then said thank you. Then he went in to saw open my mother's skull and remove the cancer cells that were destroying her brain. 

Text update from my dad to his siblings 12/17/15 #2:
Sara is out of surgery and now in recovery.  The doctor said it went well.  We have not seen her yet.  The next 7 days there will be swelling and other issues that will come and go.  We won't know about her motor skills until this all passes.  They will probably be worse for now.  We need to limit visitors for a little while, as she will not be "herself".  Thank you again for your prayers, fasting, everything.




Wednesday, January 13, 2016

You cannot look away from what you cannot see

As I write this we're on day 28 and surrounded by family. We're in the lobby of the hospital, taking up  way too much room and being inappropriately loud talking about when my mom went to see Andy Williams for her 16th birthday and how growing up in Vegas in the 50s and 60s was awesome because of mobsters and high rollers. It's my mom and 3 of her sisters, and when my mom and her sisters get together they are a force of nature. They're like an inverted hurricane: category five sound and fury and when they've passed through everything is organized and everyone has eaten their veggies.

But we haven't gotten up to today yet. This is the part of the story where we all started experiencing lots of firsts, and stepping forward into the dark and believing there would be light. This is the part where we heard that the average length of survival after diagnosis for glioblastoma multiforme stage IV is 100 days. This is where we checked her into the hospital (by we I mean the neurosurgeon, but we were all hovering), and started asking all the questions except one.

What were the treatment options? We could opt for surgery, which would be dangerous and very invasive since the larger of the two tumors was very close to her center line and had grown from 2.5cm to 3.2cm in the ten days since the biopsy. We could start with only radiation. This treatment was fairly safe and relatively non-invasive and could shrink the tumors; the downside was with the tumors being so aggressive radiation might do nothing but slow their growth. Not stop it. Not reverse it. Just slow it down. The final choice was chemotherapy in conjunction with radiation (did you know you don't treat cancer without both? At least this kind of cancer) and switch back and forth between the two. This would almost definitely stop the growth of the cancer for a time, but this treatment would also make her feel weak, sick, and worst of all, nauseated.

For those of you who know my mother well you know that last word is the vilest profanity. There is nothing in the wide world she hates so much as throwing up, and she would go to any length to avoid it. Four pregnancies of being wiped out ill and vomiting constantly has given her a sort of Pavlovian PTSD. Hers was never morning sickness. It was mourning sickness, and lasted the entire 40 weeks of gestation. When you know what it feels like to have bathed your teeth in stomach acid so often it disintegrated the enamel you can judge my mom on her aversion to nausea. And going through that exquisite torture for something to stop the growth but only maybe reverse it was difficult to contemplate.

Frankly none of the options were good. Surgery could kill her or leave her half paralyzed. Radiation might slow the growth or do nothing at all. Radiation and chemotherapy would stop the growth but might not reverse it, and her tradeoff for that was to hate every waking feeling nauseated moment of her life.

These were the options as they were explained to us briefly on Monday, before her admittance to the hospital, and again on Tuesday once they'd done another MRI and found the tumors had grown roughly 28%. More than a one quarter increase in 10 days. Knowing that, the oncology team told us they needed our treatment decision by the end of Tuesday, roughly 24 hours from when we received the diagnosis. All three doctors recommended surgery as the high risk/ high reward choice.

My parents called a family council. It wasn't hard to convene- I'd flown in from Houston already two days before and my sister had driven down from Wyoming and my brother lives in the same city as the hospital, so calling the council was pretty much my dad just saying, "Let's sit down and talk about this." My parents wanted our thoughts and input. Not only that, but they wanted us to make this decision, make it as a family, make it unanimously, and make it in the next three hours. I wanted three decades to research and study. But we work with what we're given.

So we sat down to talk about it. The plan, as my father laid it out, was for us to each share our feelings on the treatment options and ask any questions we might have. If we didn't know the answer we'd write it down to ask the surgeon. After everybody got their turn to talk we'd each say with treatment we thought we should go with. Then we'd pray about it and see how we felt.

Here came one of the ways in which I diverge from the rest of my family. I forcibly held myself still and mentally pressed my lips closed against the myriad of thoughts, opinions, concerns, and questions crashing through my mind. Not because they wouldn't want to hear from me; on the contrary, they'd listen as long as I wanted to keep flapping my tongue at them. No, I wanted to hear what they had to say without being swayed by any of my thoughts or opinions. And I knew that my silence would force them to speak. Or force my dad to call on them, whichever.

Dad called on Ciera to talk first. She's the oldest child, so I thought that made sense. Ciera has always been careful and thoughtful in her decisions and never embarked on a course of action without a plan in place first. She expressed concerns about the risks inherent in the surgery including the high risk of partial paralysis, but also concerns about the possible ineffectiveness of the radiation and what effect either could have on her future quality of life. It is important to note at this point that my mom couldn't walk well on her own, never wanted to eat, and was seeming weaker by the day. Quality of life was a big concern for us.

While she was talking I had moved around my brother's other side so he was between Ciera and I. Just in case that wasn't enough, when Ciera was done talking I gestured to him and said, "Stephen?"

He hadn't been there when we'd received the diagnosis. The rest of us had experienced two and a half extra hours of knowing before he'd been able to make it to the hospital and hear.  Even so, his words largely focused on one of the two questions we had all been thinking but hadn't said out loud yet.

"How did this happen?" Without actually saying the phrase his thoughts and sentiments circled that theme. And since he didn't say those words no one could say, "Cancer just happens," or "I don't know." But when he'd finished, we were all silent.

We decided to run a few errands and think and pray on our own, and then meet back in an hour or so to discuss. No one had expressed an opinion one way or the other yet- we were bewildered, overwhelmed, and none of us had eaten anything since the day before. We weren't ready yet, so we started to leave.

"Wait, Angie," my dad stopped us. "What do you think?"

I had one chance to say everything I was thinking. I wanted to say the most perfect, succinct, well constructed sentence in the history of language. What I needed to say was something honest. "I'm scared," I said. My mom reached out and I took her hand. "I say surgery. Kill it, kill it with fire."

My mom smiled at me and squeezed my hand, then my two siblings and I left to ponder, to pray, and to talk.

And to eat. We were in Utah, and we all love Cafe Rio, and neither Ciera nor I have one close to where either of us live, so that's where we went to get food. It was so strange; my siblings are awesome people, who are intelligent, fun, creative, and easy to talk to. So the odd part was when we realized this was the first time in our entire lives that the three of us had gone out to lunch together. Honestly I couldn't remember just the three of us doing anything together since before my sister was married nearly two decades ago (I'm rounding up, Ciera, but really not by much). And we had fun. Every moment, every word was heavy with the context of what we were going through, but despite that it was fun to just be together.

We went to Walmart after and bought them anniversary cards for my parents to give to each other. Have I mentioned that Day One, diagnosis day, was also their 38th wedding anniversary? Obviously they hadn't celebrated, but we thought they should. We took turns trying to find cards that were the perfect balance of humorous and heartfelt, and several times I not-so-sneakily went off by myself to cry a little. That's how I do it, a little at a time. Ciera waits until she's alone and then does it once and does it hard. Stephen... I'm not really sure. I'll have to ask him.

We found the cards and since it was still almost Christmas, bought some poinsettias too. Four of them. Then we went back to the hospital to our waiting parents. To our surprise we also met our grandfather, Grandpa Newman, visiting my mother. My father's father, he has been a pillar of strength and a personal inspiration and protector my whole life. I immediately felt a little better.

My dad had already brought my grandpa up to speed and so, after arranging the poinsettias, we prepared to pray. In my opinion, for me, what came next is the most important thing that has happened in this entire journey so far. Some of you may have noticed that whenever I've referred to my mother's children or her pregnancies I've said four, but I've only ever mentioned two siblings. My third sibling, a younger sister, passed away as a baby. Her name was Karissa. She was born with complications and didn't stay long in this world, but I've always felt her lack in our family. I know my mother has too- it's always been painful for her to talk about my little sister, but the weight of that loss has never left her.

We were in a loose circle to pray with my mom in her hospital bed. My brother was on her left, with my sister next to him. Then my grandpa, then me. Then there was a space slightly smaller than two people standing shoulder to shoulder, then my dad on my mom's right side. He said the prayer for us. He plead with Heavenly Father for us to know, as a family, what would be the very best choice to make for my mom. He asked for the Spirit to confirm to us the right choice and to grant us peace. He explained what the options were and what thoughts we had about each one, and asked for guidance. Then he was silent.

A light hand rested on my shoulder, and I could feel Karissa standing in the space next to me just as real and present as my grandpa on the other side. I'm not sure if I felt or heard her whisper in my ear, "I'll protect mom during surgery, I promise." I said her lack in our family has affected me, but my whole life I've also felt close to her, like I knew her. When I was young I had dreams about playing with her in fields of flowers but she was always taller than me. Here in this moment she was a few inches shorter.

She squeezed my shoulder and stepped away from me into the place that completed the circle. She was there with us. Our family was WHOLE. But my dad was still pausing, silent, the prayer incomplete. It had been several minutes and I got worried- was he crying? Did he need help? I stepped around my little sister and rested my head on dad's shoulder. He paused for a few heartbeats more, then expressed gratitude for the Spirit of the Lord and closed the prayer. As we said, "Amen," I felt Karissa pull away and opened my eyes.

My dad spoke first. He said the impression he received was to trust the doctors, and that he was reminded in previous blessings my mom had been given she'd been promised that the Lord would guide the doctors in their tasks and treatments. The doctors recommended surgery, and he felt that was right. Then it was my turn. I could see the tears in my mom's eyes and hear her breath catch as I related what and who I'd felt. Surgery was the right thing. My grandpa passed on his feelings, saying he was only there to support us. My sister said she'd been told to continue to trust in her parents, as she had her whole life. Whatever they thought would be right, would be right. Then my brother shared that he hadn't heard a voice or felt anything specific, except that he could clearly think the word "surgery," but when he tried to think of what the other options were he could not remember them.

Finally my mom's turn came. She said she'd heard the voice of the Lord promising to keep her safe during the surgery, and that angels would be sent to protect her. My little sister was going to be one of them. So was her father, my grandpa who passed away when I was almost ten but whose kind eyes and knock knock jokes will always be a cherished memory.

It was unanimous. It was amazing. And it was a personal, tailored message to each of us that not only was our Father in Heaven listening, but that he was going to take the time to answer each of us individually and in a way we would understand best. For that moment all the fear was gone, replaced with feelings of peace, love and wholeness. We had found the eye of the hurricane.






Tuesday, January 12, 2016

Sister, I see you dancing on the stage of memory

I'm not calling this a guest post, because even though this blog is registered under my name it's all of our story. This post is from my sister Ciera.

Here it is:

I am not a writer or philosopher. I am me. There are times in our lives that define us and shape us and this is one of those times. If we don't write them out, they fade to memory and become blurry and the sharp insights we are to gain from these kinds of experiences become dull and hard to recall when we need them. Or maybe when others hear about these experiences and need them, I won't be able to relay the meaning as well; and so I write. 

I'm broken a bit, not beyond mending, but the cracks will always be visible. We all have our cracks and chips and imperfections but that is what makes us real.  I can hide behind some make-up, some lash extensions, or a cute outfit, but the lines are still there. 

A while ago I made the mistake of thinking life for my family had been pretty free from major trials and heartaches. Everyone has their own battles they face everyday but on the whole we were doing great. I felt very blessed and still do despite my previous arrogant thought being decimated by events of late. 

"Grief, after the initial shock of loss, comes in waves. When you're driving alone in your car, when you're doing the dishes, while you're getting ready for work. . . And all of a sudden it hits you-how very much you miss someone, and your breath catches, and your tears flow, and the sadness is so great it's physically painful." -Nicole Gabert

Yes I've felt like that recently. In November we lost our great big mastiff mix dog. She was my shadow for her whole short life of 5 years.  Our whole family felt the sting of her loss intensely. It surprised me how much we could love our pet. She was a member of the family and the kids still cry and so do I for the loss of our dear friend. I hadn't lost someone or some thing that had been such a part of my daily life before. Sure, I had pets die as a kid but they didn't live in the house with me and follow me around all day.  Life surprises us with its twists and turns and takes us places we don't expect no matter how much we plan.  It left a hole in me, but not as big as the one that's growing now. 

Let's jump back in time a few decades. I was born to amazing parents with amazing families themselves. You know at least one of them, or me, or some member of my family, or you wouldn't be reading this now. Growing up I had my on ups and downs but my parents were examples of the best that I could hope to be my whole life. Always knowing what and when to say or do the right things. Well not just the right things, but the things that would make those around them feel important and loved always no matter who they were, and that is an extraordinary gift both my parents possessed. I'm not exaggerating or being sentimental either, it is simply a fact.  I have been truly blessed. Their amazing examples and teachings have helped me become who I am today. They introduced me to my Heavenly Father and the gospel of Jesus Christ and by their examples I leaned on their faith and was able to grow my own. You have to understand the reason my parents are so amazing is because of what they are founded upon; their unshakable faith in God and His plan of salvation for all of us. We all love my parents so much and have been drawn to them in our lives because they exude the love God has for each of us; His countenance shines through them because of their righteousness.
My sister has let you all know what is happening so I won't repeat; I don't need to, but I do want to add my thoughts. I've been grieving since November and when my mom thought she may have had a stroke, around Thanksgiving, I got scared again. Watching her down since June of 2015 with back injuries has been rough. So I started to think, "something else now?  Why does something else have to happen to her and my dad?" 

Then they started running tests and doing biopsies. It didn't really equate in my mind but my thoughts kept turning to, "I lost my dog and now I’m going to lose my mom too," even before we had a diagnosis. I did research based on what the doctors had said just to help brace myself if it was really bad. All my findings led me to the worst case scenario -glioblastoma multi-forme stage IV-  Even before the appointment when they told her that is what it was on December 14, 2015, I had a strong feeling. I was being prepared. 

The day before moms appointment with the neurosurgeon was a Sunday. I was home in Wyoming. I couldn't be still and I couldn't hold tears back. Bryant told me to just go to Utah and make a plan for the kids and he would help. I hate asking for help, I like to do everything myself, but I couldn't ignore the feeling. Bryant helped me get out the door and I left. I'm so glad I went. Being there for the appointment was important. Hearing my worst fear come out of the doctor's mouth about my mom, who had suddenly become so frail, stilled me to the core. None of us moved. She was admitted immediately. It became survival mode. I held it together until I called Bryant. All I was able to say was that it was the worst thing it could have been and what we were afraid of.  The the tears came out I as crouched in the hall of the hospital leaning against the wall. I wanted to be strong for my parents because they seemed to be holding it together. My mom and dad have unshakable faith and I wanted that too.

She had been given so many blessings the last few months.  She had been promised things would be OK.  She had only progressively gotten weaker.  Her chiropractor she had been seeing for the L2 fracture and the herniated disks was talking to her in October and said that she should be getting better and he couldn’t figure out why she wasn’t.  One of her very best friends had seen her after the horse accident and said she noticed my mom had lost a little weight, which was to be expected.  When she saw my mom again in October the weight loss was so dramatic it had her worried.  Looking back now we know it was the cancer sucking the life from her slowly, but at the same time, oh so quickly. 

Why?  Why her?  Why before she even hit 60 years old?  Why does one so righteous have to go through so many hard things and to now have such a lethal and aggressive form of cancer?
Why not?

“Prayer is the act by which the will of the Father and the will of the child are brought into correspondence with each other. The object of prayer is not to change the will of God but to secure for ourselves and for others blessings that God is already willing to grant but that are made conditional on our asking for them. Blessings require some work or effort on our part before we can obtain them. Prayer is a form of work and is an appointed means for obtaining the highest of all blessings.” -Bible Dictionary

Bryant, my husband, had to receive the news from me while he was at work.  I didn’t want to tell him then, but he wouldn’t be put off.  He had to know, he had the right to know.  Of course there were no words.  He had to finish his day at work amidst tears.  His office staff was so supportive to him and to me.  I am very grateful for them.  We talked on the phone as often as possible over the next few days.  Not being there was so hard for him.  He wasn’t there to feel the special spirit that came to reside in her hospital room while we were there.  He didn’t hear the many blessings of comfort.  He wasn’t there to see the quiet reverent grace and dignity that exuded from my parents.  He didn’t get to be there for the family counsel we had to help my parents decided to go ahead with the surgery to remove the tumors to give her a better chance of living longer, despite some possibly devastating side effects.  Don’t get me wrong, we were terrified.  My parents were terrified.  My dad still won’t leave my moms side.  I lost 5 pounds that week, I didn’t have to lose.   After a few days of being with my mom and I had to come to to care of my own family and jobs.  I was going to be home for a few days, coming back for the weekend, then we were all going back for Christmas.

When I got back with my family we had to tell the kids grandma had cancer and we didn’t know what was going to happen.  They took it all right.  Young age and lack of life experience somehow makes news like that seem a little less heavy.  Bryant however was in a very dark place.  We talked a lot about it.  He wanted to know specifics like we all did, but he was adamant.  He wanted answers to questions that none of us had.  He wanted to know why her blessings had told her she would get good news and she would be OK and then we get the news of stage IV cancer.  He wanted to know every possible side effect and if my parents really understood how devastating this news was.  He thought they must not understand the severity of the disease or they would be more upset and how could they be calm.  He told me straight up he’d taken a huge hit on his faith, but not his testimony.  When he and I talked he was very frustrated and I just sobbed.  I told him I don’t know Heavenly Father’s plan, I don’t know they reasons why, but how could I deny the God that would hold my beloved mother in His arms if I ever wanted to be with her again.  How could I attempt to council the God of the universe about what I thought was right and what should be.  I am broken, but not believing, is never an option, because that would leave me more vulnerable than ever. 

He called his parents on their mission and cried to them several times asking why the most righteous woman he has ever know was given this trial?  Why weren’t her blessings coming like they had been promised?  Why weren’t we getting our prayers answered and her pain and trials kept getting worse?  Bryant’s parents gave him some great council and sent him a few quotes that were a turning point for him. 

 Elder Neal L Anderson: “Faith never demands an answer to every question but seeks the assurance and courage to move forward, sometimes acknowledging, ‘I don’t know everything, but I do know enough to continue on the path of discipleship.”  

Elder Randall K. Bennett: “We fail only if we fail to take another faithful step forward.  We will not, we cannot, fail if we are faithfully yoked to the Savior - He who has never failed and will never fail us!”

These quotes provided us both so much comfort and helped us again face forward with faith, but not without sorrow.  We have never been promised our lives would be without things that will try to break us, in fact it is quiet the opposite.  It is up to us to take those things that try to break us and use them to make us stronger.

We had another experience before we went back to Utah that strengthened us as well.  Bryant’s brother Derek had his own very spiritual experience and felt impressed to share it with us about their Grandmother that had passed away 5 years before.  Because it was so special, it will suffice to say it reaffirmed and  greatly impressed upon us the reality of our Savior Jesus Christ and that He truly lives and that the Atonement is real. 

Before Christmas my mom underwent the surgery to remove the tumors.  When we saw her after when she was in the ICU.  Under lots of pain meds she wasn’t herself of course and healing from that type of surgery is no easy process.  She kept tracing letter “M”s on her leg begging for the blessing of a miracle.  My Aunt Ellen took that and ran with it collecting letter “M”s from any and all who love our family to show my mom how much support she had.

By the time it was Christmas Eve we were on our way back down to Utah.  We had Christmas Eve dinner with Bryant’s parents and His brother Derek’s family.   Bryant’s father, Wayne gave us both beautiful blessings which brought us more comfort.  We visited with my parents Christmas Eve next.  My mom had been released from ICU so now the kids could go in to see her.  While we were there and it was getting late a wonderful Santa Claus and Mrs Claus showed up in the room giving gifts to all.  The sacrifice of those wonderful people to give their time to those in the hospital on Christmas Eve brought tears to my eyes.  

Christmas Day my sister and her family arrived and we all spent time together at the hospital with my parents.  When we weren’t all at the hospital we were all at my parents house.  It was so strange to be there without them, their absence was tangible.  It was good to be together with my sister and brother’s families despite it all and we gleaned strength from each other.

We all continued to pray for a miracle for my mom.  She steadily improved but we had to cut our visits shorter and not all of us at the same time.  Her left side was totally neglected and she no longer had use of her left field of vision, her left arm, or left leg, just as the surgeon said was probable.  We all spent as much time as we could together and with my parents, but the coming of the New Year couldn’t be stayed.  We had to come home and get kids back to school and get back to work.
Testimony meeting came.  Bryant asked me if it was OK if he could go up and talk about my mom and his experiences.  He didn’t really want to but couldn’t deny the spirit prompting him to talk about everything and the trial of faith he had experienced and how he came out stronger for it.  I told him to go ahead, but I would be crying just listening and there was no way I would be physically able myself to talk about it.  He bore a beautiful testimony.  Our ward family was and continues to be so supportive of us.  It was a good day.

Two days later we received a call from my parents.  They had finally had a Dr talk to them about life expectancy and options for my mom.  By now she had just started rehab at the same Provo hospital (which was no small feat that she got to stay at the same hospital due to my sister’s valiant insurance battling!)  It was the day they were to start the radiation and chemo to treat the parts of the cancer still left in her brain.  The Dr told them that the post op MRI was all ready showing signs of re-growth of the tumors despite the chemo wafer being placed in her brain during surgery.  Starting chemo and radiation now would prolong her life, but not for more than a few months and would likely severely decrease her quality of life until the end.  Now it was up to them to choose.  They chose quality over an extra very sick month or two and decided not to do chemo and radiation.  She only has a few months left to live at best.  Bryant and I huddled in our closet and cried as we talked to them on the phone.  My mom kept apologizing.  I told her it wasn’t her fault at all.  We ended the call amidst a fountain of tears.  

It is ending.  The life of my mother is ending.  The greatest comfort I have is that I know she is ready.  I had the feeling weeks ago that my sister who died before she was an hour old was going to have her turn with my mom.  When that feeling came I didn’t want to believe it, but now I do.  My mom is ready.  We are not ready to lose her, but life and eternity is not on our timetable.
There will be more to write later, but for now I say “Thank You”.  Thank you for all your love and support.  The questions may have come to you, “What about Sara’s miracle?”  Its going to come to my kids when she passes and this is what I will tell them.  I was reading the definition of “Miracle” in the Bible dictionary.  It talks about Christ performing miracles and miracles for the sick and afflicted and sites passages of scripture about those instances.  One of the last scriptures it references is long and talks about the miracles of creation and so forth.  Upon further cross referencing the scriptures teach us about the greatest miracle of all.  It is the miracle of the Atonement of Christ.  His suffering for our sins in the garden of Gethsemane and on the cross transcends all miracles in power and majesty.  I know that my mother has and will continue to receive that miracle.  She has lived her life in such a way, such a perfect way, that she will be taken into His arms for eternity and be cleansed every whit.  That is her miracle.  That is the miracle I strive for to be worthy of.

Sunday, January 10, 2016

Here come bad news, talking this and that

People, especially people who care about you, always come with the best of intentions. People want to help, they want to make you feel better when you're sick or sad or lonely. And usually that's great. It's awesome to have people around you to help you out, lift you up, or make you smile. But there are times when trying to make someone feel better is the worst thing you could possibly do. I'm going to save you embarrassment and our being annoyed at you by giving you "THE RULES OF TALKING TO MY MOTHER RIGHT NOW." They're down below. Following those I'm going to give you "THE RULES OF TALKING TO US AFTER."

This is a slight deviation from the story, although it will still contain parts of the story. Things you need to know, like the text my mom sent from the hospital early on. "The gentleman in the room next to me passed away today. There were so many things going on at the time that the only nurse available was a student nurse. This poor girl had to be with him while he died, record the time, and then tell the family. I found her in the hallway crying, so I brought her into my room. I gave her some Kleenex and sat and talked with her for a while until she felt better. I am so blessed to be here at the right time to help her."

Or this story she told me today. "[My dad and my mom] go to the cafeteria every morning for breakfast. Mike drapes towels over each of us so it won't matter if we spill. We always try to sit by the shy people and talk to them so they won't feel so lonely; [another patient] just sits there and giggles like she can't believe we're taking time to talk to her."

I could spend the rest of this blog post talking about my mom, an amazing person and friend and how people congregate around her because she makes them feel good. Every time. I could talk about dealing with grief and how hard this is to contemplate my life without her. But I'm not. Instead, I'm going to address the rest of my blog to everyone in the whole world who has ever had to interact with someone who is trying to deal with a loss, and especially in this case, someone who's loss is their own life.

Here it goes. RULES FOR TALKING TO MY MOTHER. Number one: If you must say something, stick to talking about normal things. Tell funny stories, talk about how your life is going, let her lead the conversation. If she wants to talk about her illness or her future, that's up to her. It's her life, it's her illness, she knows you love her because you're there. The only thing that really makes her sad is seeing how sad other people are about this. She's amazing. She has come to terms. Her big weight is leaving us behind.

Yesterday I was talking to a very dear friend who had recently lost his mother. His counsel resonated with me in the way things I hold to be true echo in my heart. He said we need to be joyous for her, not make her burden greater by sharing our pain. There will be a time for that. Right now she is graduating and we have the chance to celebrate with her. If you need to cry, and you can absolutely cry, you can pull one of us aside and we can cry together. But if you give yourself the chance you'll feel her peace and her love and her personality envelop you, and you can borrow that for a while.

Number two: don't talk about this blog. She's uncomfortable being the center of attention, and always has been. I asked her permission before starting this and she said yes, but knowing that you are out there reading about her makes her uncomfortable. And if you have ever loved me even a little please do not tell her that I post pictures with this.


RULES FOR TALKING TO US AFTER- After she passes on, whether that's soon or a long time from now. If you absolutely have to say something or your head is going to explode, I will give you two things that you may say if you mean them. Number one, "I'm here if you want to talk." That's it. Don't add anything. This tells the sufferer that they aren't alone, and it also gives them something they are sorely lacking. Any kind of control. That's why the word "want" is important, not "need." But you can't say it if you aren't serious about it.

Number two is even harder. It can feel awkward or out of place. But you can talk about the person who's gone ahead. You can share your favorite story, especially if it's funny. Talk about how you met. Talk about your favorite thing about them. It feels so taboo, but it shouldn't. It serves several purposes. It reminds the person to whom you are speaking that they aren't alone in their grief. Misery loves company, but not because misery is a sadistic jerk. Because people who are hurting can have that pain validated by others who are also in pain. And it gives them permission to also talk about it.

Right now my mom is here, but the impression I keep getting is the same as the third one I had in the temple back in the beginning of December. He NEEDS her. And He needs her now. The neuro-surgeon told me when I asked that if we hadn't done the surgery she would already be gone. This time we have now with her is extra, it's a special gift we are being given so that we have time to prepare, to love, to rejoice, and to wrap our minds around the idea of her not being around. My husband compared it to going on a mission- it's hard to let a loved one go away, knowing that you won't see them for a long time and they'll be far away. But that isn't a reason to keep them from going on their mission. Right now she's received her call but hasn't left.

So please help us focus on the joy of having her now, because the pain is coming but it doesn't have to be here yet. And as my mom has said to me more than once, "Everything will turn out okay in the end, and if it's not okay, it's not the end."





Saturday, January 9, 2016

We were meant to live for so much more...

I'm writing this post and the several following with the permission of my family members and with the intent to share what we've experienced; some of it awful, some of it spiritual, some of it silly, most of it sad. This is not to convince or testify or lay blame or persuade. You may not be able to relate. I hope you can't. But I know so many of you care so deeply that either a) knowing that we're hurting and not knowing why is hard, or b) you know why and you want to know more and check in every day but you also don't want to be annoying. 

Or someone just linked you this blogpost and you have no idea what's going on. You may want to quit now. 

I had this really strange dream a few months ago. One of those really vivid, ultra real dreams like I'm not supposed to have anymore now that I'm on my maximum dosage narcolepsy medication. In my dream I was in the front passenger seat of an SUV and my mom was driving. We were traveling on a narrow road with a steep drop off on the driver side and a flat sheer cliff face on my side. The view in front of us and to the left was spectacular; it looks like all of those postcards you see of Bryce canyon with the strangely rounded columns of rock sticking up out from the ground like enormous chess pieces. My mom was gesturing and pointing to things she wanted me to look at, and I kept telling her to watch the road. Just look straight ahead. Just keep your eyes on where we're going. I felt really concerned about this, but my mom kept wanting me to see all the amazing things all around us. And then she drove off the cliff.

She didn't do it on purpose; I'm not even sure how it happened, whether she missed a turn or we just got too close to the edge. But we were free-falling, miles down, spinning through the air in the car. I was panicked-I was terrified-but in my dream all my fear was for my mother. And then I felt the voice. Not heard a voice; even though the words were very clear it was very much a voice I felt. All the voice said was, "I've got her," with the image of two hands together in a cupping shape.

The speed at which everything was happening changed. We were suddenly falling in slow motion, but I could still react at normal speed. I felt impressed to open the car door, and we climbed out of the car as it was falling. The moment we were outside the car it returned to normal speed and crashed below us. It landed on the canyon floor with shrieks and groans of twisting metal and shattering glass. My mom and I were still falling in slow motion, and reached out one hand each and grabbed the nearest pillar of rock. Then we climbed down as easily as one would climb down a very sturdy ladder.

At the base of the rock there was an old wooden barn. It wrapped around the stone so the only way to get to the ground was to go into the barn. Once inside and on the ground, I tried everything I could think of to escape. Everything that is, until my mom said, "Did you try the door?" It was not locked. We opened the door, and went outside into the bright sunlight.

After that my dream got indistinct and blurry and abstract, in the way of most normal dreams. The next day at work I kept getting poked in the brain with the thought I should tell my mother about the dream. I am not the most subtle or immediately obedient of creatures, so it took until nearly lunchtime before the poking got annoying enough for me to take action. I went on break and called my mom, who listens to me patiently and asked me about all the other parts of my life. I think the only comment she made about the dream itself was something to the effect of, "Oh, that's nice." 

I think the dream must've happened in April or May. It was warm but not hot outside, and more relevant we hadn't gone to Wyoming yet. We had a family reunion in Green River in early June where my sister and brother-in-law live. We went camping, hiking, 4-wheeling, boating, and horseback riding, and for the most part, it was glorious. Until my mom broke her back falling off a horse. 

It wasn't the rider's fault or the horse's fault or the fault of the deer that spooked it, just one of those things that happens in life when the horse goes one way and the rider goes the other, and my mom fell off hard onto a slope and came to rest on an ant hill.

She broke her L2, among other lesser damage. She couldn't walk and was in a great deal of pain. After several ER trips and one excruciating drive we got her back home to Payson. My wonderful husband and fantastic boss arranged it so that I could stay with her there and take care of her for the first two weeks, making sure she got her medicine and food and water in the appropriate amounts and times and tried to keep her engaged and occupied until she could get up and move around on her own. 

Then in August my parents were in a car accident. Not a small one, but one that totaled their minivan and refractured her L2 and left her with disc herniation of C6 and damage everywhere in between. More ER visits, more back pain, more physical therapy to try and get back some normalcy. I wasn't around for any of this one, but heard about it extensively from family in the area. 

My amazing mother recovered somewhat and went back to most of her daily routine. Thanksgiving rolled around and I, still being in Texas, called my parents to wish them a happy holiday and connect with those for whom I am grateful. On the phone, I mentioned to my mom that she sounded a little strange, like she was having trouble pronouncing certain words. There was a long pause, and then she admitted that the left side of her face was drooping. My sister-in-law had noticed and commented on it at dinner earlier that day. My sister-in-law being an excellent and intelligent person also did some quick testing to see if my mother had perhaps had a stroke, but that did not seem to be the case. My mom decided it was likely Bell's Palsy, and ignored it for a few more days.

That Saturday, though, she went to see her doctor. He was concerned and sent her to the hospital in Payson for an MRI, thinking that the imaging would show she had, in fact, suffered a stroke. But that wasn't what they found. 

Lesions. It's an ugly word; it sounds both like open wounds and attacking armies. The MRI said there were several lesions in the right temporal and right parietal lobes of her brain. No sign of a stroke. But the lesions (that word again, I hate that word) were large enough and concerning enough that the transferred her to Utah Valley Regional Medical Center that day. They ran blood tests and urine screenings and CT scans, all of which came back with either negative or inconclusive results. Suddenly we were tossing around words like "tumifactive MS," "Metastatic disease," and "cerebrospinal fluid." They did a lumbar puncture the next day, Sunday, which was coincidentally also her 59th birthday, and she told me later that everyone in the hospital flinched every time they had to scan her wristband with her name and birth date.

By the time they did a brain biopsy I had reached my limit of calm and burst into tears at work, the kind of harsh, gasping sobs that burn your throat as they come out. My boss, who is a psychologist and an incredible human being, got out of me what was going on. Within an hour he and his wife had arranged a plane ticket for me to go out to Utah and be with my parents. 

I arrived...honestly I don't remember what day. Sometime the first week of December. My mom was weak and pale and thin and laying in bed, but she was very much still HER. I looked around the room and immediately started reorganizing things to make it more convenient for her to reach her glasses or her water bottle and to charge her phone and iPad and phone case and cleared out everything that was irrelevant or in the way. Then I brushed and braided her hair, most of which was as long as ever except one small area above her right ear. Then I held her hand and layer on the bed next to her. 

That became a pattern over the next several days, where I would bring her food and water and help care for her and we would talk and share and watch HGTV together. I bought her new clothes, because she'd lost almost 40 pounds. Her left hand was weak and shaky after the surgery, so I would open bottles and help her put on her reading glasses. Her left leg started feeling weak, so we would walk around the bedroom and the top floor of her house together. She seemed to be getting stronger and eating more. 

She was given a priesthood blessing that promised her the upcoming Monday would be "Good news," and that her body would be healed. She was very comforted. This wasn't the only blessing she'd received that promised she would be all right. 

I flew home Friday the 11th of December to see my family and take care of some things I'd committed to do, and came back Sunday night the 13th. I'd been gone less than 48 hours. She, however, was much worse. 

She could barely walk or use her left hand at all. She hadn't been eating as well and stopped taking the anti-inflammatory medications and her skin was pale with grey undertones. I made her warm food and made her eat it, and helped her shower and get clean clothes on again. Then to all our surprise my sister showed up! She had driven down from Wyoming to be with my parents for the next few days, to help and be supportive and supported. 

Then came December 14th. It was this day, this Monday, that was my parents' 38th wedding anniversary. It was also the day of the follow up appointment with the neurosurgeon to get the biopsy results. Historically in our family these sorts of things always go the same way; something goes haywire, we get a bunch of testing done, we go to get the results of the final test and the doctor/specialist says, "Well, the tests are inconclusive so we don't know what caused your seizure/collapse/intense allergic reaction, so go back home and let us know if the symptoms get worse."

So that's what I was expecting. My mother had gotten so weak that I asked a hospital tech to find a wheelchair for us so my mom wouldn't have to walk from the parking lot into the office. When the neurosurgeon finally met with us and saw her he was visibly upset. "You've gotten a lot worse since I saw you last," he commented. I tried REALLY hard and kept my mouth shut over my snarky comment. But they didn't have the results yet from the biopsy; they were still with a specialist in Salt Lake.

The neurosurgeon called the other specialist and told them to send us the results immediately. Then he sent one of his two assistants to wait by the fax machine and to call every 10 minutes until the results came. In the meantime, he sat with us and asked questions about how she was doing and what had been happening. This was his introduction to me, with my manic organization and memory and research skills. I had a list of about 25 questions I thought we should have answered.

His assistant came back with the fax, and he sat and read it while we watched him. Stared at him. I left my chair and went to sit on the floor next to my mom and hold her hand and rest my head against her knee, like I used to do when I was little and sleepy or afraid. 

The doctor looked up. "This is not good news," he said. "I don't know of any way to make this better for you. Dr. Palmer at the University of Utah has looked at the biopsy and studied it closely for days now, and she is certain that you have glioblastoma multiforme stage IV."

We kept staring at him. None of us changed expression; I don't think any of us moved. "It's the most aggressive form of brain cancer," the doctor continued. "And stage IV is the final stage." He went on talking about tumors and surgery and chemotherapy and radiation and treatments. And how this was going to be the thing that killed her. He said that five or six times in different ways to the point where I wanted to scream at him. 

But I didn't. We all stayed quiet. Then he left to see about getting her admitted to the hospital right away, and took his assistants and left us in the room. 

In my head, I call that the first day.