grief

Four years ago, my mother in law came down with pneumonia.  Never fun.  During that, a scan of her chest revealed a dark shadow.  Upon further investigation, it was determined to be a tumor.  But she faced it bravely with positivity and confidence.  She went in for surgery and had a third of her lung removed.  Tests confirmed the tumor was malignant but the miracle was that after the surgery, no traces of cancer could be found within her body.  So we celebrated her victory, dubbed it “cancer for a day” and went about the healing process.  We visited the hospital every day, sneaking in smoothies or playing scrabble.  Eventually she went home and life went on.

She returned every year for a follow up scan and we celebrated each time the doctors pronounced her cancer free.  As she approached her third year anniversary, a good family friend was losing her fight to breast cancer.  Perhaps it added to our apprehension.  She went in for the annual scan and the doctors broke the news: they found a tumor in her lungs.  And almost as a side note, the scan over her brain was unclear and had to be repeated.  The second scan revealed four tumors in her brain.  We were shocked and heartbroken.  The initial diagnosis was devastating and the doctors told us with certainty that it was terminal.  For further injury, the family friend lost her fight that same day and passed away.

The brain cancer, a metastases of the lung cancer, now became the most urgent matter.  Teams of doctors miscommunicated, the hospitals fumbled and it was a frustrating period of several weeks before they took action.  In fact, they took so long the tumors grew and plan A ended up being rejected in favor of something more aggressive.  They surgically removed the main tumor and she came out of surgery better than anyone expected.  About a week later, she returned to the hospital with signs of infection around the incision.  Staph infection had snuck in, thoroughly infecting the bone plate (that was removed and then replaced to get to the tumor underneath) and the entire cavity.  They had to open the incision again, throw away the bone plate, clean out the area and begin aggressive antibiotics.  But again, she seemed to recover so well that they sent her home as soon as they could.  She returned almost immediately in critical condition due to an allergic reaction to the antibiotics.  Eventually, she was well enough to undergo surgery again and the doctors put an artificial bone plate in her head.  It too became infected and had to be removed.  It would take a third attempt weeks later before it was successful.

During those months, she underwent radialsurgery, an aggressive form of radiation therapy as well as other drugs, some in experimental stages, to treat the tumor in her lung and remaining tumors in her brain.  Those were successful and the newest drug even helped with the symptoms of her rheumatoid arthritis.  We became optimistic; the course was frustrating and full of stumbling blocks but we were increasingly confident that she would return to a place of strength.  Doctors confided that they can’t “cure” brain cancer, but the can often “get rid of it”.  Perhaps she would be well for several years and when it returned, we could treat it again, giving us perhaps many more years with her.

That would not be our story.  In November she began having the first obvious symptoms.  Until then, her cancer had been discovered “clinically” or really, on accident.  By catching it early, it increased her chances of success.  And looking back, we later recognized little red flags, mostly in her verbally communication or energy levels.  Or for me, in the way she responded to my girls, becoming more easily overwhelmed by their noise and energy and immaturity.  Always loving, just more and more, “not up for it”.  A few days before Thanksgiving, she called me and asked me to take her to the doctor.  I had frequently offered to accompany her to treatments or appointments but she always declined, probably not wanting to inconvenience me and the girls.  I got to the house early to visit before taking her to her appointment and immediately determined we were going to the ER.  She was in obvious, debilitating pain.  We rushed to the hospital, my best friend came to get the kids and I sat with her through the day.  My husband literally walked off the plane he had just boarded and returned home as soon as I called.  The doctors investigated the pain, focusing on her back and suspecting a pinched disc.  They got her pain under control, prescribed medications and sent her home.  Late that night, the pain raged out of control again and Husband took her back in, desperately seeking something stronger than the prescriptions to get her comfortable.

After the fifth visit in three days, my husband told the doctors they weren’t leaving until her pain was manageable with at-home prescriptions.  She was transferred to the University Hospital seeking specialists.  In one of those visits, I had asked about meningitis and if they could do a spinal culture.  To my surprise, the doctors agreed and readily ordered the test.  By the time they got to the U, the culture delivered the verdict: she had cancer cells in her spinal fluid.  These cells were attacking her nervous system, causing intense pain and multiplying rapidly.  In retrospect, that was our point of no return.

In the following weeks there would be many more trips to the hospital.  She would have a few good days and then often without reason, the pain would flare beyond the control of her at-home prescriptions and could only be tempered with a trip to the ER.  After a day or two in the hospital, she would return home, sleep for a day or two and then perhaps have another brief reprieve.  It was our new normal, our new baseline.  Fragile, but manageable.  She had the last, and finally successful, surgery to replace the bone plate.  The doctors also installed an omyia, a permanent port in which they could administer medications directly through her head and into the spinal fluid reservoirs to treat the cancer cells.  We celebrated Christmas and New Years, always enjoy the few hours of strength she would have before tapering off again.  My husband started a facebook group so we could share updated with extended family and we were buoyed up by the stories and pictures people posted there.  Husband’s siblings came during Thanksgiving and again during Christmas to spend as much time together as they could.  During other weeks, Husband and his dad worked as little as they could and often from the house so that she was never alone.  Husband and I took turns bringing the girls over, one at a time, so they could spend time with her.

Early in those weeks, I spent a tender moment with her.  I had begun to cry, not needing to explain.  And she told me it would be ok.  “I have favorite people on both sides.  So whether I’m here, or there, it will be ok.”

On January 11^th, what we thought was another “episode” began.  In the morning she was talking and able to get around the house.  Toward evening, her pain flared and she returned to the ER.  This time, something was obviously different and the pain was more difficult to manage.  She was transferred to the Hunstman Institute, to the care of her cancer team and she rapidly declined.  Her last spoken words her to her husband.  On Sunday morning, she opened her eyes and said “Hun, will you hang out with me today?”   We spent all of Sunday at the hospital with her but she never became responsive again.  On Monday, the doctors determined there was nothing more that they could do and according to her wishes, sent her home.  Hospice care was arranged and as a blizzard set in, we prepared to move her home.  

Because of the snow, the 45 minute drive took almost two hours.  The transport team was great but it was obvious her pain was increasing, moving past the comfort the medications could offer.  The hospice nurse was at the house and waiting but our smooth transition fell apart, becoming increasingly traumatic.  The prescription for the pain medication was written at half the strength the hospital had used.  It would obviously not be enough.  And now that the long drive had put her off schedule, she was already beyond what we could offer at home.  Oral morphine didn’t even touch the pain and the dilaudid drip into her IV was completely ineffective.  Dad and the nurse called everyone they could at the hospital, asking and arguing for the codes to unlock the electronic box that regulated the drip so we could increase her dose but no one would authorize it.  All the while, her pain raged on until we finally called an ambulance.  At the ER, they administered the heavy doses required to get her more comfortable and Husband’s siblings arrived, heartbroken at her state.  The attending doctor offered his regrets and said she was not likely to make it through the night.  He admitted her to the hospital and we settled into her room to begin our vigil.  

Mom and Dad’s sibling trickled in through the night.  We spent several hours sitting bedside, comforted by the sacred gift of music.  Dad and his sister played guitar and sang as they have before, heralding her to the gates.  In the still dark, early morning hours, we retrieved the girls from their beds.  We had left them at home under the care of my parents.  But now, we wanted them to come say goodbye.  Their sweet innocence was touching but short lived and childish antics took over and they spent more time in the nearby kids room with their cousins.  Sunrise came and more family arrived.  Eventually we took the girls home and with their energy seemingly unaffected by the night’s drama, dropped them off at school.  Throughout the day more family and friends came and the room became crowded with so many friends and family.  The hospital provided plenty of snacks and drinks and someone picked up pizzas. (That was something Mom always did—provided a basket of snacks and treats as comfort during hospital vigils.)  Mom continued to linger, seemingly unaware of us but at least resting.  Eventually, my wonderfully thoughtful aunt pointed out that perhaps mom held on to give us a chance to say goodbye, but now needed us to let her go.  So the crowd drifted away.  I disappeared to take L to her piano lesson and when we returned, the room was quiet.  We were trying again to get hospice arranged so that her last few hours, however long that might be, could be spent at home.  But hospice was dragging their feet and the levels of red tape took hours.  When L and I came back to the hospital, we had only been there a few minutes when there was a sudden shift in the atmosphere and we instinctively knew that was our last bit of time with her.  L said a tearful, sincere goodbye and then stepped back, sitting with her little cousin, effectively keeping them both quiet and entertained while we waited.  One of her attending nurses is a close family friend and he had visited frequently, now telling us this was it.  Her breaths became slower, more labored, sounding more pained each time.  And then there was the relief of silence.

The next morning, we all went to breakfast together, still wrapped in the stunned emptiness.  Dad ordered two hot chocolates, one of those “slips” where your brain still hasn’t processed the new reality.  There has been several since and I’m sure many more to come.  We spent most of that day in a fog, letting the girls play together and the adults just wanting to be near each other.  

Planning the services took almost an entire day.  The mortuary was wonderful to work with and eager to help, even with some of our more non-traditional and unique requests.  Mom wanted a celebration of life including food, music and dancing.  We couldn’t honor her wishes of having the service in her own backyard due to the ongoing snowstorm, but we did best we could.

We did some shopping, picking out beautiful green ties for Dad, husband and his brother.  The women picked out green scarves, even Dad agreed, it was something mom would have picked.

It was a particularly tender and sacred experience when my two sister in laws and I got to assist with dressing and preparing Mom for the services.  

Flowers continually arrived, breathing taking arrangements of every size and variety.  We also arranged for flowers through the mortuary.  The casket spray was all white.  Next to the casket was a standing spray of 38 blushing peach roses—their wedding flower and one for each year of marriage.  There was an arrangement of five long stemmed roses, one for each granddaughter.  And perhaps most unique but so fitting, a large order of wildflowers that we divided into many mason jars and lined up along the base and sides of the casket.  

We struggled with planning the service.  Long ago, Mom told me she had written what

 she wanted for the funeral program in the back of her journal.  I’m not sure why she told me but upon recalling that, we searched the house for hours.  We found old journals but not what we were looking for.  So we planned the service on our own.  The morning of the viewing, I stumbled upon her most recent journal but there were no funeral notes in it.  It was almost as if she had once planned it but that was no longer what she wanted.  Satisfied with our plan, she let us find the journal and peace of mind.

My brother in law, a gifted artist, designed the program.  The front of the program was his own original artwork, almost Celtic in design and incorporating many symbols to represent what was most important to them.

Husband wrote the obituary found here: http://www.probstfamilyfunerals.com/obituaries/Cynthia-Hansen/#!/Obituary and Dad’s sister offered tender tribute here: http://coriconnors.blogspot.com/2015/01/circles.html?m=1.  

The first “lone” evening, Dad’s siblings brought dinner and spent the evening with us.  There was music and stories and so much comfort drawn from being gathered together.

Inspired by that, we invited Mom’s siblings for dinner the next night and again, shared stories and lingered together.  I began bringing down the family photos albums and started scanning photos.  Going through the pictures together provoked many stories and smiles.

There was a viewing held Friday evening at their home.  Close friends offered a true labor of love, clearing the snow and building a temporary sidewalk and enclosure that led to the house, protecting visitors from the snow.  Along the long driveway that approached the house were luminaries, white paper bags decorated by the grandkids and then lit with a candle inside.  It was truly beautiful.  The front room was bursting with flowers that surrounded Mom and had a continual flow of family and friends all evening.  Sisters from the church made and served wassil through the viewing.  Dad stayed next to Mom while their children took turns at his side.

After the viewing, we tucked our kids into bed and left them again, in the care of my parents.  We spent the night with Dad.  The mortuary let us keep Mom at the house for one last night together and we wanted to be a part of that.  

Saturday morning began with a viewing at the mortuary.  The line was lengthy with many friends coming to offer condolences.  My parents brought the girls to join us and stayed with us throughout the day.

Eventually the crowd moved next door where the funeral service would be held at the Town Hall.  The immediate family gathered around for family prayer offered by Dad, followed by the closing of the casket.  In that moment, my sweet little girl fell apart.  A and E had been sad, but easily distracted by cousins and too innocent to perceive the full spectrum.  Up until that moment, L had very little reaction as well.  She was even in the room when Mom passed and had been okay.  But the finality of closing the casket sent her sobbing and we clung together crying as the pallbearers took Mom from the room and to the funeral.

The funeral service was wonderful.  Mom’s sister spoke first, focusing on her life as a child and young adult.  Husband continued the eulogy into her adult and family life.  Husband siblings shared the mic, trading words to describe Mom and offering thoughts as they went.  Dad’s talk focused on the things Mom had taught him, the things he wants us to carry with us.  And the final remarks were offered by the friend officiating the service, the same nurse who had been with us in her final hours.  In addition to the spoken words, there was music.  The beautiful music that carries emotion and sediment when words cannot offered such beautiful tribute and comfort.  Dad’s sister sang “Memoria” and Dad’s brother sang “Amazing Grace”.

At the close of the service, the pallbearers took mom to a horse drawn hearse, per her request.   Dad took his seat alongside the driver and the rest of the immediate family piled into a large horse drawn carriage as well.  The path from the Town Hall to the cemetery passed directly by the house.  Mom’s horses had been moved to the front pasture and being social creatures, we anticipated some acknowledgement.  AS we passed other pastures, horses would look up, sometimes even call to the horses pulling the carriage.  But as we approached Mom’s horses, they came running to the fence.  We paused for a moment and then as we continued, the horses did laps around the pasture as if to demonstrate their own restless ache.

At the cemetery my husband dedicated the grave and we stayed as the casket was lowered.  The pallbearers dropped the corsages onto the lowered casket in tribute, followed by the grandkids each with their long stemmed rose.  And eventually, the horse drawn carriage led us back to the Town Hall.

What followed can only be described as a party.  Lunch was catered by our favorite restaurant in the valley, supplemented with Mom’s favorites: Diet Dr. Pepper, salt and vinegar chips and Good and Plenty candies.  There was an open mic with many wonderful tributes and the chance to spend time with many friends and family.  Even in her passing, that lady can throw a party.

Husband’s siblings stayed through the next week, reluctant to leave.  Then fortunately, after only a week apart, the family came together again for Mom’s birthday on the 30^th.  On the 29^th, we had extended family join us for dinner at a favorite restaurant in SLC.  The food was wonderful and Dad came up with a great tribute.  We each thought of a word or phrase to describe Mom, wrote it on a paper and put it in a basket.  Then the basket was passed around and we each drew out a slip.  We had to read the word (not our own) and explain why we would think it could describe Mom.  Then the originator of that word also got to explain.  

The next day we went tubing at Soldier Hollow, something we did almost every year as a family.  The initial ride was a great thrill but A got cold quickly so we played in the lodge for awhile.  For dinner we made dinner together and Dad made blushing peach pie, the same dessert Mom made for him the night he knew he would marry her.  We played wii games together, complete with cousins squealing and even Grandpa joined the game.  And then the next morning we had a breakfast feast together, enjoying our time together to the last moment before we said goodbyes.

And now the hard part, finding our way back to regular schedules and routines when it felt like nothing will ever be the same again.

I suppose the story ends there for now.  Heaven knows this entry is long enough.  But there’s still so much rolling around.

I miss her.  I’m still waiting for her to stop by, with her rhythmic knock that sends the kids racing for the door.

We found half-filled gift bags in her office.  They might be for valentines day, maybe for Easter or birthdays.  She was always thinking ahead and gathering little things for thoughtful, fun gifts.  I ache thinking about how many birthdays and Christmases we will have without her here.

I feel cheated that she won’t be at the girls’ birthday, baptisms, graduations or weddings.  That probably hurts most of all.  This is not how the story is supposed to go.

I hate that I don’t get years ahead with her.  I don’t get to hear endless stories about Husband as a child.  I don’t get to call and ask parenting advice.  I didn’t get to learn family recipes.  I had ten years and it simply isn’t enough.

I didn’t get to hear all the stories behind the many treasures she’s collected over the years.  We found half-finished lists of things she wants the girls to have and I wish I knew their significance.

I regret a conversation that hurt my feelings and now I won’t have a chance to fix it.  I wanted a closer relationship.

I’m angry that I missed opportunities.  We knew she was terminal but she was doing so well that I held off certain suggestions, worried that they would depress and discourage.  But it turned so fast that now it’s too late to have her write letters for the girls to give them as adults.  I wanted to video her reading bedtime stories for the girls.  I wanted recipes in her handwriting.  She had an experience last summer in which she knew it wouldn’t be much longer and I regret that I didn’t know that, that I didn’t get to seize that moment. 

I’m mad that the chronic staph infection robbed us of what could have otherwise been long stretches of “healthy time” to play, talk, travel and make memories.

It hurts that her final moments were not a gentle, graceful, sweet step into the eternities.  Her last night was rough.  Perhaps if hospice had been properly prepared, she could have spent a few more days in comfort at home.  I wouldn’t have missed a moment with her but it hurts to remember her obvious pain.

The past few weeks have been rough.  Obviously and for all of us.  I’m not so selfish to realize that what I feel must only be a portion of what her spouse or own birth children feel.  People would ask how I’m doing, how Dad is doing, and it’s easiest to say “ok”.  But truthfully, I think we are all just good actors.  It will take time.

In the midst of all this, something else happened.  And not to belittle either experience, but perhaps to understand better why I’m such a mess: my mom had foot surgery mid December.  She stayed with us through the experience to be closer to her doctor and so I could help take care for her for a few weeks while she would be completely non-weight bearing and while my dad was at work.  To make a long story short, it was complicated.  She became so dehydrated that her kidneys shut down, her medications pooled and she became overdosed.  I don’t know why I woke up early that morning.  Instead of my usual sluggishness, I was completely alert.  I wandered into the tv room to check on her and saw her folded in half.  At first I thought she was stretching.  Then I realized she wasn’t responsive.  We got her to the ER and her vitals were so dangerous they thought it was a massive stroke.  She was admitted to the hospital and spent several days there to get her stable.  She came home just before Christmas and returned almost immediately to discover multiple blood clots in both lungs.  In the end, she’s ok.  Both times her condition became critical, it was caught in time that the doctors could quickly bring her back to good health.  Her recovery was slow and long but she’s ok.  Had I lost both moms only two weeks from each other, I’m sure I’d be staring at a padded wall by now.  The third time we ended up at the ER, discovering more blood clots, was the day after my mother in law had died.  I sat against the wall, crying through half the visit while the nurses reassured me over and over that she was okay, not knowing what else had happened.

But the silver lining is that I’m SO glad she was staying with me.   Once she was feeling better, she was still unable to get around.  But having her at our house meant I could leave the girls asleep at home while I spent time with my husband and his family.  I’m sure she buffered my anxiety and irritability around the kids.  And I got to just be with her and talk to her.

So even a week ago, I admitted to my mom that I was still a mess.  I feel vulnerable, haven’t slept much and cry anytime it gets calm and quiet enough that I actually can acknowledge it.  Sometimes I feel that my grief is out of proportion, especially compared to what it must feel like to other family members closer to her.

But I know it’s getting better.  I’m not sure what caused the change.  I think last weekend's “run-cation” helped immensely—time away with close friends and throwing myself into running in a way that is physically challenging but somehow, emotionally cleansing.  Time with my husband, drifting back into our busy schedule and cleaning the house, maybe all comes together to help me feel a little more like myself again.  Things will never be the same again, but perhaps it will be ok.