So many years have gone though I'm older but a year

The hardest part about starting anything like this is finishing it. This isn't the last entry, please breathe, I'm just whining because these are getting harder to write. Time seems to be fighting with itself (or messing with me) because every minute stretches out to infinity and I live a week in every 24 hour period, but the date on the calendar flashes by almost too fast to catch. I need a Jane the roommate so I can know what day it is, too.

Mom is home now. She was so very happy to be home; happy to be somewhere she knew, somewhere quiet, and most of all that first week, somewhere she could take a nap in a dark room by herself and not be woken up every few hours to tell someone else what her name is, where she is, what day it is, and try to squeeze their fingers. She slept on a bed in her own room and said it was the best sleep she'd had in years. When my parents asked the hospice nurse about what my mom should and shouldn't eat and how much and when, the answer was, "Oh honey, you eat whatever you want. It's up to you." In fact the only downside was having hospice nurses at all- the word "Hospice" is unpleasant in sound and denotation, and so we were all forbidden to use it. The two nurses who come to care for my mom are her "Graduation Prep Team" and we're all on board.

Everything about coming home was better for my mom. The only problems were that she needs someone with her all the time, since she can't move anywhere under her own power. We needed someone with her at all times to cover all the extra fluff stuff beyond breathing and sleeping; you know, things like food, water, warmth, etc. And my dad works full time and needs to keep his job, although they had been nothing but kind and supportive of everything my parents have needed. The solution came from a comment the hospital social worker made to my dad. "People keep asking how they can help, right?" He nodded. "Use Excel to make a volunteer schedule."

My dad took that idea and ran with it, and gave it over to one of my mom's best friends and my favorite people from her ward and from their street. She took the Excel spreadsheet and made sure not only someone was always with my mom, but it was someone my mom already knew and loved. It was amazing. It continues to be amazing, because it's been over a month and there's never been a time when we had to scramble to find someone to cover. Instead it's been more of a fight of limitations, "No, only two hours." "No, we already have someone today." "She had family fly in from out of town, so we won't need you tomorrow. No, you can't come anyway. Yes, you'll get another turn." The outpouring of love and support wasn't like a cup running over so much as a barrel under Niagara Falls. We didn't have room for all of it.

And through it all my mom remained kind, patient, and loving. Not always peaceful, calm, and grateful, though- this was all taking it's toll on her, straining her emotional reserves and pushing a feedback loop of grief. We could talk about it, abstractly, what it might be like on the other side and the people waiting there, or theorize about what new tasks and teaching she might be given. She'd been told that this was a sanctifying experience for her, and we were all trying to be properly humble and faithful about it.

But it was hard. It still is hard. There is an incalculable difference between knowing something and believing something. Thinking in my brain, "This is the right thing, my mom dying is the right thing, it's what Heavenly Father wants," is a far cry from my heart being fine with my mom being taken away. She was struggling with this too. How could this possibly be okay, let alone right?


Mom had a visit from a good friend with high connections and they had an important, and very personal, long talk. After that she had some direct answers to private prayers, and both of those have given her a lot of peace. For her having peace I am profoundly grateful. She believes this is right; not just thinks it, she feels this is the right thing at the right time, and I'm going to have to lean on her belief until I can find some of my own.

Everyone asks me how she's doing or how I'm doing or if I'm okay. I'm not okay. It's going to be a long time before I am okay again. That's how these things work, the way it's supposed to be. I have hope. I have faith. But I found a better answer for how my mom is, and for the underlying question, the question everyone actually wants to have answered but doesn't want to ask. How long.

The following list I've taken from a website called www.brainhospice.com. It's a site designed for those who work in hospice who are given care of patients with illnesses and diseases specific to the brain, and who may not be as familiar with the care and prognosis of that type of patient. The site is written by a hospice worker with a brain cancer care specialty.

She begins with this caveat:
"This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys have already been quite long tend to spend longer in each of these stages."

Before going into the symptom list.

    3-6 Weeks Prior to Death

    Motor
       Increasing weakness on the affected side
       Falling due to resistance to accept help
       Need for more assistance with walking, transfers

    Urinary/Bowel
       Urinary/bowel incontinence may begin
 
    Cognitive/Personality/Speech
       Confusion and memory loss
       Harder to sustain a conversation
       May say some odd things that make you think "Where did that come from?"
       May ask less about the next treatments or appointments
       May ask clear, rational questions about death, arrangements, etc.

    Physical
       Increasingly tired, more easily "wiped out" after simple activities or outings
       Headaches may indicate increased swelling
       More likely to nap or to phase in and out of sleep

    2-3 Weeks Prior to Death

    Motor
       May begin to see weakness starting on the non-affected side
       Affected hand may curl in or be kept close to the center of the body
       Legs begin to buckle, eventually leading to dead weight when attempting to stand
       If still walking, may wander around the house a little, as if restless
       May find it difficult to hold the head up straight or may slump over
 
    Urinary/Bowel
       Urine becomes dark (often described as "tea-colored")
       Less warning before urination (more urgency)
 
    Cognitive/Personality/Speech
       Less interest in matters of the home and family, hobbies, or world at large
       Detached, without curiosity
       Harder to have an effective adult-peer conversation
       General restlessness/agitation
       Word-finding difficulties (conversation may be very slow)
       Confusion over what time of day it is (sundowner's syndrome)
       Speech may be slurring or trailing off, unfinished
       May begin saying things that sound like awareness that time is growing short
       May begin to seem more "childlike"
       Confused by choices; yes/no questions seem to work best

    Physical
       Losing interest in transferring or leaving the house
       Seems to feel safest on one particular piece of furniture
       Begins to have problems swallowing, if not already
       Appetite may become sporadic
       May be sleeping 20+ hours a day, with short alert times between sleep
       May doze back off after eating
       May describe vision changes such as double vision, loss of peripheral vision, or black spots
       No longer interested in activities that require close vision, such as reading

    1-2 Weeks Prior to Death
 
    Motor
       Often, completely bedridden
       Younger patients may still be stubborn about getting up, though requiring assistance
       May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

    Urinary/Bowel
       Usually incontinent by now
       May continue to express urinary urgency, without producing anything

    Cognitive/Personality/Speech
       May find loud or multiple sounds irritating
       After waking, seems confused for several minutes
       Staring across the room, up toward the ceiling, or "through" you
       May look at TV but seem not to be watching it
       May make mention of "getting ready" or "having to go," without knowing where
       May refer to travel, packing, or gathering clothes
       May talk about tying up loose ends (specific to the individual)
       May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
       Communication seems to take more effort and makes the patient winded or tired
       Doesn't initiate conversation as much, though still giving brief responses to questions
       Agitation may build
       Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
       May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

    Physical
       Sleeping "almost all the time"
       Can sleep even in a room full of activity and noise
       Harder to rouse from sleep
       Brief, scattered periods of alertness
       Increased difficulty swallowing pills or liquids
       Vision deficits increase
       Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
       May reach toward the head during sleep (may indicate headache pain)
       May have a distended abdomen
       Vital signs are likely to still be good
       May begin to have need for pain management

    5-7 Days Prior to Death

    Motor
       May restlessly move the legs, as though uncomfortable
       Most patients would no longer be leaving the bed by this stage
       May reach up or out with the arms
       May pick at the bed linens as if covered with small objects
 
    Urinary/Bowel
       As liquid intake decreases, output also decreases
       The bowel becomes quite sluggish and there may be few/no bowel movements

    Cognitive/Personality/Speech
       Minimally responding to caregiver's questions
       May begin sentences but not be able to finish them
       May say things that are impossible to make out or things that don't make sense
       May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
       May continue to seem restless and fidgety, as if late for something
       May be irritated by strong sounds or odors

     Physical
       May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours before death
       Decreasing intake of fluids
       Administration of meds becomes harder or impossible
       Dosing of meds becoming sporadic due to sleep schedule
       May find it hard to clear the throat as mucus increases
       The voice may lower and deepen
       May have a wet cough
       Vital signs often still good
       Nearly always sleeping or resting
       May be uncomfortable being moved during clothing or linen changes
       Dramatic withering of the legs due to inactivity (skin 'n' bones)
       May have a low-grade fever

    2-5 Days Prior to Death

    Motor
       Motor movements (eg, waving or hugging) are likely to appear weak
       Unable to help the caregiver by leaning or moving during linen changes

    Urinary/Bowel
       Bowel activity likely will have stopped
       Urine output will lessen considerably
       Urine color usually lightens

    Cognitive/Personality/Speech
       Very little interaction, often no initiation
       Speech may be quite slurred and hard to understand
       May sit in the room with others and say nothing for hours
       Could be described as "neither here nor there"
       Restlessness and agitation give way to calm
 
    Physical
       Hands and feet may become cool
       Forehead and cheeks may be warm or hot
       Thighs and abdomen may be warm or hot
       Hard to keep the eyelids open, even when awake
       May spend a couple of days with the eyes closed, even though still slightly responsive
       Minimal interest in food
       May turn or clench lips to indicate refusal of food or pills
       May seem unaware of how to use a straw
       May have had last decent fluid intake
       May bring mucus up into the mouth with a productive cough
       Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
       Some drugs may be given only by suppository or dropper now
       Vital signs often still normal, but some report cardiac changes (eg, racing heart)


    Final 8-48 Hours

       Very difficult to rouse from sleep or elicit a response from
       May have no response or only nonverbal communication (eg, winks, waves, or nods)
       May seem relaxed and comfortable
       Usually very minimal or no urine output
       Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day
       No longer any involuntary movement during sleep (no fidgets or eye movements)
       Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost
       Vital signs may be OK until just hours before death
       Blood pressure may drop significantly
       Heart rate may be twice-normal (120-180 beats per minute)

   

She continues through the final hours and even after, but essentially the patient falls asleep and won't wake up, then fades away. No pain, no mess, no fear.

That is what we're looking at now, what we're waiting for. Most of her symptoms and reactions put us somewhere in the 1-2 weeks range. It isn't an exact science, and even now I still can't decide if sharing this is a good idea or not. I feel all out of good ideas and all I have left differ only in the level of damage they might do. I haven't lost faith; she's going to be okay, and I will see her again. My mom is the most amazing example of charity through action and neither I nor anyone who knows her is concerned about where she's going after this.

It's hard because I don't know how to do this life thing without her. Two months ago we were sitting next to each other on her bed eating lunch and talking about how my sons would come to her house for food when they came to BYU for college, and how I was going to rely on her to spy on my sons' girlfriends for me. We talked about how much fun it would be to have a family reunion at Disneyland. Or anywhere at all.

Case in point- I took a break at the end of that last paragraph because mom woke up. I went in to see her and talk to her and she held out her arm for a hug. While she held me, without having any knowledge of what I was writing about or even doing before, she said, "Ang, I'm sorry this is hard." Then she told me she loved me and she's grateful to be my mom.

I told her not to apologize, that I loved her, and I was so grateful she's my mom and I was proud of her. Still, immediately, when I'm hurting, my mom is there. I can't believe how blessed I have been my whole life to have her on my side, at my back, leading me forward. Most of today I spent with her lying in bed and me slouched down in a comfy chair next to her, holding hands and napping.

Oh, mom, I love you so much.

When your day is long, and the night is yours alone

Mom came home from the hospital on January 13th, but we had a lot to do before home could be ready for her. She stayed on the 3rd floor of the hospital for about a week after that pivotal decision to forego chemotherapy and radiation and continued her physical, occupational, and speech therapy while we scrambled to prepare the house. One of my parents' very dear friends is a contractor; he came to the house to evaluate what needed to be done.

It wasn't going to be the massive project we had envisioned, the addition of a first floor complete master suite. Instead it became the most basic, "What do we HAVE to have to get her home and comfortable?" A ramp in the garage to get her into the house, and a quick remodel of the upstairs bathroom so she could use the shower, and then several hours and some excellent friends to help and the storage room in the basement was cleared out and the large king bed from my parents' room upstairs was moved all the way downstairs. We purchased and assembled a twin bed for my dad and reorganized their room to make space for the hospital bed and shower chair, and the contractor friend worked magic to get everything ready.

Meanwhile in the hospital my mom got a roommate. It was actually her second roommate, but the first one didn't stay very long. This was a lady whose age I would put somewhere in the mid-80s, with bright blue eyes and a curly cap of all white hair. I never actually measured (I thought it would be awkward), but I would guess at her straining tallest she might have come up to my armpit. Every time any of the hospital staff came in to check on her she asked if she could go home yet. They were always kind with their "Not yet," and listened patiently to all her questions. I felt both annoyed by and guilty about the roommate, because that meant the several people who came to see or stayed with my mom had half as much space and no privacy, but my mom also had a constant stream of visitors who sat with my mom for hours. The roommate, who I shall call "Jane"(NOT her real name; Jane like Jane Doe, not like any Jane you know) never complained about the noise.

Jane even proved useful. Nurses, orderlies, and med techs would come in at all times of the day and night and ask, "Do you know where you are? Do you know your name? Do you know what day it is?" My mom always knew her name and where she was, but what day is it? Really? If it's summer or Christmas break or anytime I'm not at work or at church, I don't know what day of the week it is. Jane always knew, though, possibly because she constantly had CNN on her TV, or possibly just because she was good at it. So my mom would listen when they asked her to hear the answer, and always hoped they would ask Jane first. Hooray for covert cooperation!

And trust me, the underlying question wasn't what day it was, it was whether she was aware enough and cognizant enough to figure it out. She was. Smart woman, my mother.

Even though she technically didn't have to, my mom still worked hard at her physical and occupational therapy. Speech was a little harder; it wasn't what I would've guessed speech therapy to be at all. I work with a group of psychologists, and the speech therapy was much closer (in some cases, exact copies of) neuropsychological testing we would do on patients with cognition issues. It was incredibly frustrating for my mom. When she told me about it, I got frustrated for her. The first session went something like this:

ST: (speech therapist) You've just gotten home and realized you forgot your keys. What do you do?
MM: (my mom) I get my spare set of keys from where they're hidden in the garage.
ST: You don't have a spare set of keys.
MM: Yes I do.
ST: No, you don't.
MM: Fine, I go and get the spare key my neighbor has.
ST: They don't have a spare key.
MM: Yes, they do!
ST: No they don't.
MM: Yes they do! But fine, I'll call my husband.
ST: You could do that; you could also break a window.
MM: Why on earth would I want to break a window?! I have three sets of spare keys!

I later learned that particular speech therapist was an intern- I also spoke to the head of the speech therapy department and said something to the effect of, "Hey, I know interns need hands on experience or they're never going to learn, and I support that. However, considering my mom's unique position and somewhat limited time, can she NEVER have to go through that again and instead have an actual speech therapist who isn't going to argue with her like a 5 year old?" My wish was granted.

That didn't make speech therapy much easier for her, though; the professionals were kind and patient but I was staggered sometimes at how much they didn't know. Unfair of me, I suppose, since I had been training under a neuropsychologist and it was the speech therapist job to make my mom work for the answers to help reactivate or even reconnect her neural pathways. I wished I could've been there every time to sit next to her and hold her hand and help with everything. This was one example:

ST: (speech therapist, NOT an intern) (Drawing a thick line on a piece of paper with a yellow highlighter) Sara, can you see the yellow line?
MM: (my mom)(pause) Yes.
ST: Okay, trace the yellow line with your finger. Now I'm going to draw the letter "A" in different places on the paper, and I want you to circle them. Okay?
MM: Okay.

My mom starts to circle the letters, but slows after the first few. The speech therapist keeps encouraging her to find the yellow line and use it as a guide. This works the first time, but as the exercise goes on, it becomes harder and harder.

SP: Can you find the yellow line?
MM: (long pause) No.

I'd had enough.

ME: Mom, close your eyes.

She did so with evident relief. The speech therapist glanced at me, surprised, I think.

ME: Mom, take a few deep slow breaths, and think about the color purple. Purple pansies, purple grapes, anything at all that's purple. (to the speech therapist) Interestingly, yellow is the color that is hardest for most people to see, especially bright yellow, and it's the first color their mind blocks out when it's been visible too long. White is the easiest color, but white on white paper isn't helpful. Blue is the next color. (back to my mom) Thinking about purple? (she nods). Great. Open your eyes. (she does) Now find the yellow line.

My mom looked down at the paper and pointed to it immediately. The movement of the speech therapist snapping her mouth closed caught my attention, and I smiled at her reassuringly.

ME: I work with a neuropsychologist.
ST: Oh.

Despite that setback, that speech therapist was my favorite among the three that worked with my mom because she was the most patient and the kindest. And the point of me sharing that story is not I'm so great, it's that sometimes when you're being tested by another human being the failure to communicate is theirs. Cut yourself some slack. Also, as my mom taught me many many many times throughout my life both by example and by gentle encouragement, if the answer you're looking for isn't anywhere you can find, maybe the problem is how you're asking the question. She showed me that when she was working with the Springville World Folkfest. And again when she served in the Stake Young Women's Presidency. And every time she was asked to speak or sing in public. She HATES that. Next only to vomiting, and possibly spiders, being the center of attention was the worst thing in the world for her.

She certainly wasn't losing cognition, though, despite the previous two stories. There was also this interaction:

ST: What do you do if you notice some termite damage on the baseboards in your living room?
MM: Well, when that happened last year we called an exterminator, Buffo's, which reminds me, (turning to my dad, who was also in the room) Mike, put a reminder on your phone to call Buffo's in September to have them come back and do their yearly inspection because if they don't come every year than the warranty on the Pest Control expires, their number is in my contact list. (Back to the therapist) Then once they'd cleaned everything out and taken care of the problem we had to measure the damage to the sheetrock and the baseboards exactly. I had some of the paint left over from when we'd repainted the room so when we did the repairs to the wall I could paint it with an exact match so you could never tell anything happened.
ST: (Long pause)
ME: (Miming a mic drop)

Okay, so I didn't actually do a mic drop at that point, but looking back on it I wish I had. Ah the clarity of hindsight. Speech continued to be her least favorite and mine, but I liked her occupational therapist and I LOVED her physical therapist. His name was (and likely still is) Tyler, and he was never too busy to answer our questions or explain anything in more detail. You could tell he was really passionate about what he did, and that the quality of life he could help his patient's achieve mattered to him on a very personal level. In fact, with the exception of that one intern, everyone seemed to go out of their way to be truly kind, not just nice, and cared about my mom.

Which is easy to do. My mom, being my mom, made sure to always send my dad to the cafeteria or us to the store or from two of my aunts who brought them to have cookies or slices of carrot cake (her favorite) or Lindt chocolates on hand to give to everyone who came in the room for any reason. Checking her blood pressure? Would you like a cookie? Bringing her meds? Please take a slice of cake. Came into the wrong room by accident? Oh, don't worry about it, here, have a chocolate for you and here's one for whoever you meant to go and see. Her number one goal in life was to make people feel loved.

She even touched the hearts of people who barely interacted with her. Because of her condition, her limited time left and the many visitors, my aunt asked if there was any way we could get her put into a private room again. The clinical lead, who had maybe interacted with my mom twice, worked for hours to try and figure out a way. He looked at other floors and other configurations of patients, but after a full day of doing everything he could think of the hospital was just too full.

Looking dejected he came to tell us about his failure. She was asleep at the time, so he talked to my dad and I and explained everything he'd tried to do to get her a private room. I thought he might be nervous that we'd be upset about it, and trying to justify himself. But when I reassured him that we were fine, it was only for a few more days, and thanked him for all his effort, he clenched his jaw and his eyes were wet.

"It isn't fair," he said. He'd told me in an earlier conversation that he'd been a nurse for a while before being promoted to clinical lead, but he missed working directly with patients. "Your family is so kind, and supportive. I've never seen a family be more supportive and positive, and knowing what you're going through and what she has..." his voice trailed off and I could visibly see him trying to keep it together. I patted his shoulder told him it was going to be all right.

This was apparently the wrong move. "But we're physical therapy," he protested, and the water in his eyes rolled down his cheeks. "People are supposed to get better here and then go home. Not this."

I hugged him. I knew exactly how he felt. I'd been having unvoiced variations of that same protest for more than a month now, ever since Thanksgiving when she'd first started to show symptoms, but really since June when she broke her back. She was supposed to not get hurt anymore, she'd had enough. Not this. Or August, in the car wreck that totaled their van. Hasn't she been through enough? She already hates driving and she loved that van. Not this. When they did the MRI in November and found lesions in her brain I was desperate and focused on every other possible condition or conglomeration of conditions to explain them. Not this. Then the blessings she'd received which pointed us toward hope. Not this.

But there was a crying clinic lead in my mom's room, who'd had much less time to prepare for a sweet, kind, terminal patient and her supportive family. From what the other staff had mentioned and inferences I'd made, it seemed acute rehab patients were usually pretty cranky. "Anytime you need to talk, you know where my office is," the clinic lead offered, stepping back.

Knowing that I was leaving for the airport in less than a half hour and my mom would be home in two days, I didn't think I'd ever have the chance to talk to him again, but rather than reject such a heartfelt offer I just thanked him and let him get back to work.

I lingered so long at the hospital I very nearly missed my flight home. I ran across the B terminal of the Salt Lake airport in full panic, and was the last to get on the plane. Thankfully they had a seat for me and hadn't shut the doors yet. I flew out of Utah knowing it was my last time going to the hospital for my mom, and she'd be home before I came back again. At least I also knew home was ready for her.

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.

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.

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.

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.

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.