sarahsbeingfrank

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Moving Mom

On a Thursday in early May 2021, I set out for Oskaloosa, the town my mom has called home her whole life and for the last 60 ish years, lived within a one block radius. She lived at 401 N D for a few years as a child, she and dad bought their first house at 410 N D and lived there for 10 years, then moved across the street to 401 N D, again for her, for the next 47 ish years, and then across the street the other direction to 319 N D for the next two years. She was deeply rooted in that small area of our neighborhood. It was her world.

My nerves were absolutely frayed and I was running on fumes. Without her knowledge, I, and a couple of strangers, proceeded to furiously pack up her possessions. I was going to extract her from all that was familiar and the life she had known for her whole existence. I had family friends take her out to breakfast and drop her off at her weekly wash-and-set hair appointment while the movers and I swooped into her apartment and frantically set to work.

It is a weird feeling to be in someone’s home and to go through all of their belongings without their knowledge. I’ve done it before but not for anyone still alive. Throw some things away, carefully pack some items and empty the cupboards. I had already sorted through hundreds of paper records going all the way back to my parents birth certificates and still had hundreds to go because my mom kept years of financial records and anything else she thought might need for reference. Every single thing in every single drawer needed touched, evaluated and then determined either how to dispose of or how to store going forward. I had been spending every available moment to take small bites of this for months but still had hours upon hours to go. We were disrupting the peace of her home and invading it with a sense of urgency. For her own good, of course. But I never shook the feeling of betrayal. Violating, for sure. I tried to remind myself it was for her own good.

Mom has “mild cortical dementia” and “Parkinsonisms”. Her short term memory is mostly gone and some of her long term is affected as well. She calls me several times a day and asks me about her vitamins and why she can’t find the phone number for her mom and implores me that she needs to take care of her parents’ bank accounts and their house that was sold in 1979. We go round and round in our circular conversations because she doesn’t remember what I just said. I agree with her when I can, or attempt to redirect, just to get her settled down and say “we’ll take care of it tomorrow” but if I don’t give her a satisfactory answer, she sets out on her own to “fix” it. That has caused some big problems but those are stories for another day.

Mom’s been on her own for the last few years. No one in our family is left in our home town and we sold the family home 3 years ago and moved her across the street to an apartment. My dad died 6 years ago and my brother Mike, 4. I’ve wanted to get her into assisted living for years but she was highly resistant (“I’m not ready!”) and I could only force her to a certain extent. Then Covid showed up. Even the nicest, most enjoyable facilities were locked down. Residents were kept in their apartments and couldn’t even see their families for months. That was likened to very expensive prison for me so I weighed the risks of her being on her on to her happiness living where she did, with the community she had, and her proclamation that she thoroughly enjoyed the people there, and I didn’t force the issue for the time being. But I kept up the work in the background. I thought once she lost her driver’s license that it would be the impetus for the move but I underestimated my mother’s stubbornness and determination. That, coupled with Covid, kept her there another year but I knew we were living on borrowed time. It was also taking a lot of my time, effort and sanity to keep her propped up on her own, especially during cold, snowy weather.

The family friends would take her once a week to get her hair done, out to eat and pick up the groceries that I ordered which were keystone to her life there. The groceries were important but the HAIR APPOINTMENT was critical. There was one week where it didn’t look like it was going to happen and a full-on meltdown occurred. With all of the trials and tribulations we’ve had in our family: cancer, heart attacks, paralysis, death; I have never experienced mom so upset in the moment. I have learned not to disrupt mom and her hair appointment, the hard way.

It was a struggle, at times, from my point of view. The couple that was so good about dedicating their Thursday mornings to her had some health problems which took them out of commission for a few months. The Hair Lady couldn’t always do it at the same time every week. Covid-related issues impacted our routine more than a few times. Scheduling was a house of cards. Sometimes mom went around me and called the Hair Lady when I told her it wasn’t going to happen and there were a few times that the Hair Lady actually picked her up and then brought her back home when she had an opening. Plus, I was trying to manage all of this from a distance, sometimes near and for a while, very far. The whole thing made my heart race, blood pressure rise and my sleep suffered greatly. It was either in the front of my mind or the back but it was always there and honestly, I didn’t know if I could pull it off. But, failure was no longer an option. It needed to be done, no matter how messy or off the rails it went. It had to be done. That didn’t make it easier. Harder, in fact, on me. The pressure caused me to crack a bit.

Mom relayed to me that she fell, twice in the last few months, which is incredible in and of itself as those memories don’t normally stick with her. But, as my neuropsychologist friend said, it laid down memories in a different way because it was traumatic. She had ventured out to Taco John’s, a few blocks away, with temperatures in the teens and the sun setting quickly. There was a lot of snow and ice on the ground, her coat’s zipper was broken long ago (oh the drama of trying to buy her a new coat), her worn out gloves weren’t warm and she had nothing on her head (wouldn’t want to mess up the hair!). So, she was likely hustling, which isn’t a great option with her normal Parkinson’s shuffle and poor balance, and took a bit of a short cut. According to her, she found herself on the ground, she could see lots of people in the McDonald’s drive-thru but “none of them would help me”. I explained that they probably couldn’t see her and they weren’t expecting anyone on the ground in the snowy area between the two fast food places. She said she struggled to get up for 20-30 minutes and finally a couple of workers came out the back of Taco John’s and saw her. They helped her up and she shuffled home. She did not take me seriously when I desperately explained that the situation was life-threatening. Not to mention the luck she had not to be seriously injured. Logic and reasoning had no place in mom’s mind. I was wasting my breath trying to get her to behave safely.

The next fall was in the rain. She was likely hurrying because she didn’t want to get her hair wet and evidently fell in quite the mud puddle. The reason I know that is because her butter yellow spring jacket that has long been her favorite, was covered from top to bottom with dried brownish water. I don’t know when or where that happened but the evidence remained. Again, no serious injuries but she was pushing her luck.

Previous to those falls, when she still had a car, she fell but didn’t remember. I found out because of local intel. It was on her birthday in January and it was absolutely frigid, probably not even getting above zero. There was a one inch layer of ice coating everything. Even though we had multiple conversations about staying indoors for a few day, she felt it necessary to attempt to clean off her car and then intended to drive it the two blocks to KFC for Sunday dinner. Two men, father and son I believe, drove through her parking lot and discovered mom front side down in the snow and ice near her car, not able to get up, with her standard winter garb of coat with broken zipper, no hat and worthless gloves. They got her on her feet and I’m assuming told her that this weather was not fit for her to be out. I’m sure they were not prepared for the stubbornness and determination that is Kay. What I was told is that she informed the men that she would be going to KFC and likely, because they are good humans, they put her in their truck and drove her there. I’m sure they expected to go through the drive thru but they did not understand my mom’s rules for life. She informed them that she doesn’t drive around with food in the car and that she would be eating in the dining room. So, again, good humans that they are, SAT WITH HER WHILE SHE ATE HER LUNCH and then drove her back home when she was done. Are you kidding me?! When I questioned her about it later that day, she didn’t remember and accused me of making the whole thing up. What if the people that found her were not good humans? What if no one found her in time? She laughed it off and only half took me seriously when I appealed to her vanity and said that she risked losing her nose to frostbite if she fell in such conditions.

She loved to eat out and preferably with people which drove her to walk to “restaurants” which was almost always fast food in Oskaloosa. She was crossing Highway 92 on foot on an almost daily basis and NOT at the stoplight. I was getting reports that the people witnessing this were terrified she’d lose at her game of Frogger. It was getting increasingly risky to have her living on her own and it now outweighed any benefit.

After months, actually years, of pre-work, meticulous planning, acquiring items, detailed scheduling with several involved parties, stressful days and sleep deprived nights, the day was finally here. I had been researching and visiting every potentially suitable facility within 30 miles of the metro, in addition to Osky, from the time my dad started to decline and then again when my brother needed skilled nursing and maybe a long term option and again for Mom and her specific needs. And Mom was stoically unaware. Not that we hadn’t told her. Not that she hadn’t seen the new place and actually agreed to live there, with a fair amount of pressure from me, my husband and the family friends that have supported her so caringly since my father’s death. None-the-less, the day was here and she was none-the-wiser.

Hello Again

It’s been a minute. So much has happened since I last wrote regularly that the thought of catching you up invokes a mild sense of panic in my solar plexus. That sense, mild-to-moderate-to-severe, has become an old, familiar companion.

Today I woke at 4 am, my mind working in overdrive trying to solve current issues, replaying distressing conversations and attempting to get ahead of the many variables I’m navigating, as I’ve done for the last 8 weeks…or 8 years. There was a message waiting for me when I looked at my phone from someone checking in and letting me know that she missed my posts and what I had to say. That struck me at my core and pushed me over the edge that I have been teetering on and peering over for several years. It was the impetus for this post.

Writing has been on my mind for….well….I’m not sure it has ever left my consciousness. Writing and sharing have simultaneously felt therapeutic and risky while repeatedly poking a sharp stick into my soft, tender vulnerability. After being threatened about what I was writing, I stopped, for the most part. It activated my safety issues and I reverted to being small and quiet in order to protect myself, or so my inner, traumatized child who tends to run my operating system when I get triggered, tends to do. One of my outdated, but still in effect, self-defense mechanisms.

My intent is to start sharing stories of my life again, hopefully in manageable bites. Maybe what I have to say will resonate with someone. Maybe someone going through something similar will feel a bit more connected and understood. Maybe it will help me to feel less alone in all of the life circumstances I’m navigating. Maybe none of that will be true. Regardless, I intend to find out.

Foxy – A Love Letter

Foxy has outlived and out-performed all expectations by all accounts. Saying goodbye to her and articulating everything she has come to mean to me is so hard to sort. Processing the grief is such a thorny, thick, quicksand-in-a-tidal-wave kind of deal. I’m doing my best to honor it and give it the space it commands.

What I do know is that even though I fell in love with her at first sight, she chose me. She claimed me as her own and never wavered. Clint brought her and her sister over when we started dating and she never left. I was honored and surprised. “She’s your dog now.” No, I’m her human and I have taken nothing more to heart before or since. I didn’t realize it was possible to be chosen in such a pure and simple way with no questions asked. Foxy was the best dog for me. The best dog I never saw coming and still can’t fully appreciate. She was such a lighthouse for me during some of my darkest days and a joyful, silly buddy whenever she was close to me.

Clint and I went for a walk with Petra the night we made the “appointment” and left Foxy on the couch where she spent most of her time. I asked Clint to tell me stories of when Foxy was young and before I knew her. He regaled me with the stories of her being a ring leader for his 3 other dogs to take off on escapades only to return whenever the hell she wanted, covered in deer poop and the other dogs missing their expensive new coats. She always seemed to come home unscathed and completely at peace. We trusted her to stick around during our middle-of-the-night-let-outs only to have her slip though the backyard fence when we least expected it. That caused more than a few walks though the neighborhood in our pjs, barefoot in the snow, or even drives, only to find her eyes reflecting a few streets away, wondering what we were doing, out at that time of day. She’d be home when she was good and ready.

Clint had to pry her apart from snarling, punching raccoons, bite-y possums, panicked squirrels, other dogs with bones (her own “brothers”) and cats that she may not have bothered to tell that she was friendly with cats. She was still up for kicking some ass on the front yard as she gimped around if someone or some dog dare walk past as she proved to us just this week. She gave zero fucks. She had no fear especially in the face of larger, more ominous beings. You were not the boss of her unless you had a delicious treat and you asked her for a high 5. Then, maybe. She was the seventeen year old, red-headed, ghost-faced, blond underbelly, fuzzy butt, tempestuous old dog you don’t dare try to tell what to do. And she wanted you to know that she will still cut you should you somehow pester her! Or she may just accept your pets and thank you for your attention. She would probably need a nap on the couch afterwards, tout suite. As much as we were ready to cuddle with her, she let us to know she wanted her space. OK. Again, respect.

The grief started in earnest when we made the appointment but it will still be a surprise on how it will burble to the surface. She was so many things to me including a kindred spirit and my extended heart. She has shown me strength and perseverance and how to just relax and take a good nap. She had a voice and was quick to use it and did not care what you had to say about it. She made her thoughts known, without fail. Finger biting time, for instance. She was my therapist, my emotional co-regulator, my soothing and accepting just-lay-next-to-me-to-comfort-me fuzzy friend, her paw on my knee with a pleading look when I have been yell-y and upset on the phone. She brought me back to present and to peace. I will miss her smell. I will miss her fuzzy little face poking her head over the couch. I will miss Clint yelling “Hi Da Boof!” whenever he saw her awake. I will miss her twerking and boofing (barking with her mouth closed) in her sleep. I will miss rubbing the tips of her ears between my thumb and forefingers. I will miss giving her face pets that she indicated she really liked. I will miss her one blue eye. I will miss holding her soft belly up to get a drink or to eat her food. I will miss her ever present company on the couch. I will miss knowing she’s in my atmosphere even when I’m away from her. I will even miss giving her Brazillians and keeping her down-under bits clean and dry. I will miss all parts of her being, even the ones I don’t yet realize.

We gave her the best last days we could. We took her for a slow drive through her old neighborhood last night and stopped for a pup cone at Snookies which she was totally into. We had a good trip to the dog park this morning that she seemed to enjoy. She walked further than she had in weeks, got some pets and even got her head out of the window most of the way there. And of course, plenty of her favorite instant pot chicken parts before and after.

I’m grateful she’s seen Clint and I through the last year. I was devastated to have to leave her for weeks on end last fall once we got the news that she was expected to live only a few weeks. I’m grateful for our extended time and realize it’s a luxury to be able to schedule this sort of thing. She took her final nap on the couch which she claimed as her last comfortable place to exist. And we were there with her, crowding her a bit but she didn’t seem to mind.

I’m Sorry, Mike

I’m so sorry.

I’m sorry your life was so hard.  You did not deserve the hand you were dealt but you played it with amazingly little complaint.  Your few wishes were always for the most basic of things such as being at home and some freedom to cruise gravel roads.  I’m sure you wanted to walk, to get around without the constant struggle you endured for 28 years, but you accepted it and didn’t pine for it out loud.

I’m sorry that your physical strength was waning and I’m sorry that made a tough situation even tougher.  Transfers in and out of your wheelchair and bed became precarious and frightening.  I’m sorry that the most basic things such as getting dressed or getting out of bed were a battle that you fought daily and that almost none of us can appreciate.  Every day, I list the things I’m grateful for and I often remind myself that I can roll out of bed, stand up and walk to the bathroom.  Who doesn’t take that for granted?  You didn’t, not for the last 28 years.

I’m sorry that as soon as it snowed, you became virtually trapped in your apartment.  All the snow, even when sidewalks were cleared, became hurdles that were at times insurmountable when trying to cross a damn street.  I’m sorry that our small, rural hometown didn’t have the appropriate amenities and resources that larger towns do.  Basic things such as sidewalks without curb drop offs, buildings without steps and doors that are wide enough to roll through were surprisingly scarce.  Sometimes even parking in an accessible space was difficult, let alone if some jerk parked over the painted yellow lines made for van accessibility.

I’m sorry our Dad and especially our Mom had to endure all of this with you.  She did her best and cared for you in the ways she knew how even when those ways were not the ways you wanted to be cared for.  It eventually consumed her thoughts, her time, her days.  Her heart sometimes broke multiple times a day for you.  I’m sorry I couldn’t change that.  I hate that I couldn’t change that.

I’m sorry that being in a wheelchair made your life isolated at times.  It was hard to visit people.  It was hard to go places.  Some people didn’t know how to talk to you.  But some did.  And some helped you get places or get you unstuck or lift you into the stands at the races or give you a push when you needed it or even pull your vehicle out of the ditch, while you were still in it, when you got a little too adventurous on a gravel road.  I don’t know who all of you are but I am incredibly grateful for you, none-the-less.

I’m sorry that your catheter would come loose and leak.  How humiliating.  I’m sorry it ruined many activities or at best, cut them short.  I’m sorry you couldn’t do something as basic as going to the bathroom like you were originally designed and dealt with that frustration multiple times a day, every day, for 28 years.

I’m sorry that doctors couldn’t or didn’t do more for you 28 years ago.  I’m sorry that when you first went to a local doctor, he told you that nothing was wrong and to go back to work when you had trouble walking and standing, only to be LifeFlighted to Des Moines a few weeks later.  I’m sorry that all of your doctors at that time either didn’t know what they were doing and inadvertently made things worse or did know what they were doing and took advantage of you because your case was rare and interesting.  Negligence?  Malpractice?  Egos getting in the way?  Whatever it was, you lived with it for the rest of your life.  And so did everyone that cared for you.

I’m sorry our parents were put in this terrifying, foreign position but they did their best to get you to the right places and do whatever they could to help you and give you the best life they could, within their means. They yanked you out of Des Moines hospitals when it was clear to everyone but the doctors that they didn’t know what the hell they were dealing with, put you in their car and drove you to the best we had, Mayo Clinic.  Mayo had expertise and resources.  They also had a lot of doctors that were curious about your case; your body and brain and what was going on with it.  They talked you into procedures that were not in your best interest in the rare time that our parents were not present, and as it turns out, not able to protect you from those tasked with caring for you.  I’m sorry our parents returned from a few days at home to find that you had had an irreversible surgery done to your spinal cord, that the doctors had gotten your permission after telling you that you’d never be able to walk again so you might as well let them see what was going on so that it might help someone else someday.  And you signed the consent because you believed that it was the right thing to do.  Is it a coincidence that Mayo Clinic lost all of your records?  I’m sorry I was only 15 and didn’t have a better understanding of what we could’ve or should’ve done, legally.

I’m sorry that your latest wheelchair would sometimes fall apart when you were out and about.  How terrifying is that?  I don’t know but the fact that you couldn’t trust it to be dependable was scary, infuriating and heartbreaking.

I’m sorry that confusing insurance issues dominated so much of our time.  I’m sorry that your medications increased and became difficult to manage.  I’m sorry that you endured so much time, flat on your back, in hospital rooms with nothing more stimulating than a tv, dozens of surgeries and months-long recoveries in an effort to patch you back together when your skin and tissue broke down.  I’m sorry that during that time you had to rely mostly on interactions with the nurses and me for your human connection.  I can’t imagine how alone you must’ve felt.  You had some visitors but when you’re in the hospital for months on end, those visits feel few and far between.

I’m sorry for the physical, emotional and financial burden that all of these health issues placed, to varying degrees, on our whole family.  There is no way I can describe the extent that it affected all of us because I don’t fully understand it, myself.  It shaped us, left wounds that will never heal and sometimes just exhausted us.

I’m sorry that you smoked.  It was the single most impactful thing that affected your increasing health issues but you loved it and identified with it.  It was the friend that was always there, that didn’t judge and didn’t tell you what to do.  I’m sorry you could never realize the connection between some of your most frustrating health issues and your ongoing, long-term relationship with cigarettes.  I’m sorry that the money you spent being a 40+year smoker could’ve been used for something more productive.  I’m sorry you felt like that was more important than anything else.  It likely caused the pulmonary embolism that was your official cause of death and took your last breath.

I’m sorry that you were developing cognitive issues that we couldn’t fix and that at times you were confused and scared.  I’m sorry that meant many panicked situations for all of us.  I’m sorry I couldn’t provide more comfort and stability during those episodes.  I’m sorry that your health issues were escalating and we were running out of options to address them.

I’m sorry that the last years of your life had so many doctors, hospitals, nurses and ongoing attempts at fixing everything up that seemed to be going wrong and eventually just getting your basic needs met.  I’m grateful for your home health care team that was in the trenches with you, sometimes on a daily basis, to keep you going with whatever you needed.  They went above and beyond their duties.  They cared deeply for you, not just as a patient, but as a person.   They are the unsung, behind-the-scenes heroes in this situation.  Beth and Ashley, thank you isn’t enough.  You fought for Mike and were his lifeline to staying in his home which was so important to him.

I’m grateful for your friends “in the building” and the sense of community you had there.  There were always folks around to chat with, maybe play some cards with and even watch out for you.  They cared and we know it.

Your struggle is over but our grief is not.  I grieve not only for your death but for your life.  28 years of accumulated emotion is coming to the surface.  It’s been waiting for permission to be acknowledged and to be felt.  There are many lessons to be learned from your life and I’m trying to see them.  You found happiness and laughs in the simplest of things and the smallest of spaces.  I will remind myself of that.

http://www.batesfuneralchapel.com/obituaries/Michael-Russell-10/#!/Obituary

 

 

The Dog Hospice Has Closed

Get Scout outside by carrying her down and out the steps to the back patio with Foxy following. Start the coffee. Fix their breakfasts and pills while intermittently glancing outside to see what Scout’s doing and if she needs help. This was a typical start to my recent mornings.

Scout’s back half was getting weaker and weaker. Her spinal cord injury from years ago was deteriorating. We were now helping her get up almost all the time by lifting her by her flashy red belt. Once she got going, she’d often surprise us and take herself for a walk around the yard, circumnavigate the house and maybe check out the neighbor’s yard, too.

We knew her day was coming. We watched for signs and symptoms. Maybe liver or kidney failure? She sure drank a lot. Congestive heart failure? Always a possibility with her heavy breathing. Her bowel movements? Always kept things exciting!

Sometimes she’d walk under the table, get stuck and patiently wait for one of us to move a chair or the table out of her way. She stayed closer and closer to her water bowl.
Sometimes she would tip over backwards, her rear feeling heavy and weak, before getting the water so I would pick up the bowl and hold it up to her mouth until she had her fill.  I often wondered if *this* would be her last walk or her last trip to see my Mom. Sometimes she slept for so long and laid so still, we wondered if she was already gone. Then she would sense us checking her out and jolt awake as if to say “not yet, dammit”.

Me, leaning over Scout: Scout, blink once if you’re still alive, twice if you’re not.

Scout, rolls eyes to give me a dirty look.

Me: Good enough.

But even as she spent less time on her feet and more time laying around, she still seemed to recover enough to let us know that today wasn’t her day. The night previous, I told Clint we should do a little family photo of the four of us, before we lost our opportunity.

Scout’s ears and their fringe would still perk up and she still had a light in those cataract-filled eyes when she recognized her favorite things, i.e. Clint, food or me when she thought I might be bringing her food. She still had a decent shot of getting up on her own when she was wearing her Wonder Woman socks with the grippy rubber on the bottom. Every night Clint would get down on the floor with her, talk softly while intermittently stroking her and gently putting on her socks.  The soft pat-pat-pat-pat of her walking in those socks brought a smile to my face, every damn time. Her black fur turned her into a ninja in the dark but the pat-pat-pat-pat always gave her away.

She seemed to enjoy riding in her wagon, like a queen with the three of us as her court. People loved seeing her and we would get ridiculous comments and lots of questions. Some would flat out stop us to talk and maybe take a picture, many would try to take pictures on the sly. One couple ran out from their house, yelling at us to hold up so they could question us. A man driving down the street did a u-turn, pulled up next to us and wanted to know her story. When we got that wagon for her, we never anticipated the genuine delight and surprise it would evoke in people when they saw her in it. Clint and I would often do a lap at Gray’s Lake with Scout and Foxy. When Foxy and I would walk behind Clint, who was pulling Scout, it would provide me a front row seat to people’s unfiltered reactions and comments as they passed them, not realizing or caring that I was part of the Dog-In-The-Wagon Pack. Is it really that hard to believe that we’d pull an aging dog in a wagon who could no longer do a lap but still wanted to go? Or did they just think we’re crazy? Both?

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Then, about 10:40 Thursday morning, Scout had what we think was a seizure. She’s had them before but not in a very long time. Clint curled up with her on the floor and held her and kept her safe and comforted. Snuggling with him was always her favorite place with her favorite person. I watched her for signs of what was happening; eyes, mouth, breathing, feeling her heart beat. I talked to her so she could hear a voice in case she couldn’t see anymore. After an hour of all of us on the kitchen floor, me looking up info about dog seizures, Clint and I discussed what our options were. We knew if she couldn’t stand or drink, our decision was made for us.

We moved all of us to the couch after we put some extra sheets on it and Scout seemed mostly relaxed and comfortable. But after an hour or so, she still couldn’t stand and her left eye was twitchy. I called the vet. They couldn’t get us in. Are you serious? I have to repeat this damn call again? And again? You can no longer stay with your pet during the process at the Animal Rescue League and that was a deal-breaker. I called a couple of friends for referrals (thank you Jana and Tiawny, for getting me what I needed through a choked-up voice) and was able to get into the Van Meter Vet but not for a few hours. We moved to the floor on the front porch. We huddled on the floor as it softly rained. She licked my hand in a rare show of affection, she licked Clint’s face, we waited, we kept her comfortable and we waited. And waited. As the wise Tom Petty said, the waiting is the hardest part.

Your mind goes to weird places when you’re waiting for death and you know you’re the one to usher it in, that her expiration not only has a date but a time. You vacillate between practicalities such as getting the pet hammock in the back seat and feeling the sadness and grief that are churning inside you. Take Foxy out for a whiz. Back to Scout. You watch her, you stroke her. You hope she’s comfortable. You get her what you think she needs. All while silently listing my favorite things about her, my private ode to her.

There is something about the vulnerability of a dog that raises a different kind of emotion in me. You are responsible for their lives, their care and their death. You will probably have to make all of the hard decisions for them. They need you. They depend on you. They give you everything they have and if you’re lucky, your last gift to them is a peaceful death.

 

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Today’s Theme

If I’m going to do it, then let’s DO IT.   What do I GET to do today?  Let’s get today’s party started.

When did these thoughts occur to me?  As I was lying in bed, being awoke by a dog next to me, yakking.  She had jumped into bed during the evidently terrifying rainstorm, now vomiting a piece of cartilage about the size and shape of a quarter of a lemon from what I affectionately call a “moose knuckle” that she had been gnawing on yesterday.  What do I GET to do today?  I get to wash my sheets AND my mattress pad!  I’m also very grateful I did not skimp on the brand new mattress pad.  It did it’s job quite well.  Yay!

What do I GET to do next?  Go to my doctor and chemo appointment.  I get to get poked in the arm, at least twice, and cross my fingers that this stuff works for as long as possible.  And at the moment, I GET to have insurance.  Big yay!

What happens while I’m getting ready for the doctor’s office?  Besides the laundry, I’m caring for Scout and Foxy.  Scout has been deteriorating for a while and the last two days have been some of her slowest and weakest.  Today?  She’s perked up.  She’s getting up and down, mostly on her own.  She’s interested in what’s going on around her.  She’s been outside twice.  While I was admiring how much better she was moving, she walked up to me, looked me in the eyes, paused for a beat and then dropped a turd as she stood in front of me in my living room.  I choose to think that’s her way of saying that she’s feeling more like herself and that she made me a present.  Hardwood floors, yay!  Scout’s feeling better, yay!

Foxy isn’t feeling well as evidenced by the bed vomiting and is very needy right now.  She follows me around, more than usual, and paws at me to pet her, touch her, look her in the eyes and give her my undivided attention.  I do it several times for a few minutes a session but hey, chemo awaits.  More pets when I get home, Foxy, and I’m happy I get to do it.  She has been a very good therapist in our time together and comforted me in a way only an intuitive dog can.  I’m grateful I can repay a bit of it.  Foxy, yay!

What else do I GET to do today?  I get to eat!  I fast before treatment to help the efficacy of the drugs and to minimize side effects.  I usually eat normally on Sunday and then not again until after treatment on Wednesday.  Food, yay!  Even better, I get to eat a meal with three kick ass women.  Fun, yay!

I GET to workout this afternoon.  I’m looking forward to my bench press and arm session.  I’m grateful for my strength and my ability to to work at it.  Working my body and brain, yay!

And at the moment, I GET to have this needle taken out of my arm so I can get on with my day.  The party that is my life continues, yay!   Happy today to you and I wish you happiness in all of your GETS.

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Flying A Flag And Baptism By Fire

When Dad died in August, the funeral home folks explained that they fly a flag over the bandstand on the square each month to honor a recently deceased veteran.  They accompany it with a short article in the Oskaloosa Herald telling a bit about the soldier and his time in the military.  When asked if we’d like to do this, I agreed because the United States flag was important to Dad and he often had one flying.  He was drafted and sent to the most foreign, unimaginable place to him to do things against his gentle, kind nature in order to protect that flag and for what it stood.

I picked April for his flag to be flown because Dad always loved the flowers that started to bloom, the morel mushrooms that would sprout and also because it was his birthday month. Instead of having the funeral home folks compile a few paragraphs of dates and places, I said I would write something and submit it to them, crossing my fingers that they would think it was worthy and appropriate.

I went through his military documents, some handwritten notes and in my mind, sifted through a few of the stories he shared with me.  I often found myself tense and holding my breath.  I was touching the essence of my Dad and in a distant way, his fear, loneliness, courage and resiliency.  How do you honor a person whose importance and influence cannot be adequately articulated?  How do you encapsulate and convey what he experienced and sacrificed?

Well, duh, you don’t.  I gave myself a little talk and permission to capture a few dates, places and one story because anything else would be too overwhelming and probably not right for the intended audience, anyway.

Here is what I wrote:

In December of 1951, John W. Russell received a letter from the Selective Service System that would change his quiet, small, rural life; an Order to Report For Induction.  A month later he was officially in the United States Army.  He would leave his parents, his friends, his job, his skating rink, his fast car and the only life he knew, for two years.  He bounced from Camp Crowder, Missouri, to Camp Chaffee, Arkansas, to Camp Cook, California, to Fort Lewis, Washington, before leaving the states.

His departure from Seattle took him aboard a boat with hundreds of seasick servicemen on a seventeen day voyage to Yokohama, Japan.  From there, Tokyo and then to Iwo Jima for six weeks of Supply School.

Then, April of 1953, Korea.  He was assigned to the Headquarters Company, 3rd Infantry Division, 15th Infantry Regiment.  His first night there, his commanding officer introduced him to the Supply Sargent who offered them both a drink to which the commanding officer declined.  This infuriated the already inebriated Supply Sargent who tossed his drink onto the commanding officer, splashing onto the wood burning stove keeping him warm, and both the Sargent and the commanding office became engulfed in flames.  John never saw either of them again and from this point on, he was the Supply Sargent.  He was in charge of supplying the front line, the Main Line of Resistance, with artillery, a duty that weighed on him, the lives lost and changed with that artillery never leaving him, until the day he died.

He survived numerous battles, including the pivotal Outpost Harry, “Hold At All Costs”, frequent food poisoning, death, destruction, the inhumanity of war and the loneliness of missing his loved ones.  He left Korea and was honorably discharged in January, 1954.  He resumed his life and his job at Rolscreen where he would work for 44 years which included his service time.  He downplayed any talk of his medals (Sharpshooter, Bronze Stars) but instead chose to remember his comrades or as he always referred to them, the other “kids”.

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Treatment And A Long Overdue Rant

For two and a half years, I’ve undergone chemotherapy.  And EVERY. SINGLE. TIME. I get outraged at the “offerings” in the chemo room.  They have crackers and sugary snacks along with soda and drinks masquerading as “healthy” but are very much NOT such as Ensure and Boost which are primarily comprised of soy and some sort of sweetener such as corn syrup.  Gross.  SO Gross.  That’s disgusting for any human being but reprehensible for providing to cancer patients in a treatment center.

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Let me be clear, this is not only provided for free, but often there is a gray-haired-sweet-older-retired-type lady bringing these “treats” around in a basket and joking about how I should take one because she made them at home this morning.  And she rarely takes “no” the first time.  Last time I told her I don’t eat that junk, in fact I fast for a couple of days leading into treatment to make it more effective and to minimize side effects but when she has some nutritious veggies and meat, to let me know.  She was visibly taken aback.  I’m guessing she’s not used to being turned down let alone with so many words.

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It is well known that sugary, carbohydrate-y substances fuel cancer.  You have to look no further than how a PET scan works which is a common test to see where cancer exists and how greedily it’s gobbling up the radioactive GLUCOSE tracer (FDG).  So, what’s the deal with a cancer treatment center providing substances that are not only the antithesis of health but directly related to fueling the disease that they are supposedly trying to slow or eradicate?   This INFURIATES me.

In the Oskaloosa waiting room and treatment area where I accompanied my dad, weekly, for many months, they do not provide boxed and bagged treats but an elaborate spread of cookies and sweets along with lemonade.  Do you know how hard it was to keep my dad, and also my mom, from eating that stuff?  “Sarah, they wouldn’t put it out if it wasn’t good for you.  They’re a hospital.”  ~Mom.  Did I mention that sugar can also burn out your brain, so to speak, and fuel Alzheimer’s?  Sigh.

Is it malpractice?  Is it a way to keep the “customers” coming back?  What is it?  WHY WOULD ANYONE DO THIS?

I’ve asked.  I’ve asked the nurses.  I’ve asked the doctors.  Mostly I get blank looks with maybe a “patients like it and they complain if we don’t have them” comment with a shrug.  Um, what?  This is a good reason?  If these institutions are serious about “health”, effectively treating disease, increasing longevity (health extrapolated over time), and genuinely caring for their patients, then they need to look at their own backyards and CLEAN THEM UP.  It is time to let go of “it helps with nausea”.  In my experience, it doesn’t.  Same with those I’ve asked.  And if it does help you?  Bring your own “junk”.  Better yet, empower yourself to explore healthier alternatives.

Are patients going to complain?  Absolutely.  Try taking away anything that is free and hyper-palatable from anyone who has grown to expect it.  They can be quite cranky.  Still not a good reason to keep providing it.  Would a doctor provide a cigarette to a smoker because he’s grouchy?  Not a good one.

Don’t even get me started on the well-meaning but possibly misguided non-staff folks that bring in cookies and other unhealthy treats to celebrate milestones or birthdays or whatever-awareness-month it is.  I understand how inextricably food is tied to our lives for good times and bad, for celebrations, for mournings, for boredom, you name it, it is a go-to.  But we are past time for rethinking this aspect for hospitals and treatment centers.  They are the examples, like it or not, and it’s WAY overdue for them to be a good ones.

Or, how about taking a “radical” step and implementing an exercise program in and around the treatment area?   I put radical in quotes because it’s something I do with every treatment.  For me, it is not radical but commonplace.  I do push ups, jumping jacks, yoga, squats, whatever I have room for, in the waiting rooms.  You’d think I’d lost my mind based on people’s reactions.  But isn’t it crazy to NOT do these types of movements?  It can help with the uptake of the chemotherapy into the cancer cells along with other known benefits of exercise and cancer treatment.  (See video below.)  I understand that patients don’t always feel up to those sorts of movements especially if they are recovering from surgery, months into harsh chemotherapy or in end stages of disease, but even chair stretches can provide benefits.  At every stage of my treatment, I have found a way to move.  The more I move, the better I feel.  This is not radical.  I’d rather see this as an option rather than something that is going to decrease my health.

But appropriate exercise under professional supervision – before, during, or after treatment – seems to substantially improve your odds.
Catalyst meets a group of cancer patients that is experiencing extraordinary benefits from prescribed targeted exercise programs.

http://www.abc.net.au/catalyst/stories/4459555.htm

I’m trying to make good decisions for myself and my loved ones, our lives depend on it, and there is plenty of opportunity for me to make bad ones.  I do NOT appreciate being enticed in the chemotherapy room. I am more informed than most there and I can and will resist but for those that aren’t, I feel like they are being taken advantage of.

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These paragraphs from Dr. Colin Champ, radiation oncologist, summarize my thoughts more eloquently so I have copied and pasted them but included a link to the whole article which is a 3-5 minute read.

https://www.myhealthwire.com/news/breakthroughs/897

But unfortunately, what October really turns into is pizza parties and sugar cookies at cancer centers — actually pink sugar cookies with pink ribbons made of pink sugar frosting. It is one thing for cafés and restaurants to be participating, but when hospitals and cancer centers display these “cigarettes” for breast cancer, a line has to be drawn. Awareness of breast cancer has become a celebration of indulging in the things that, well, lead to breast cancer. Anyone confused? I know breast cancer patients sure are.(10)

It is understandable for patients to be unaware of these metabolic connections. However, when they see these unhealthy behaviors not only occurring at cancer centers, but being promoted, what message are we communicating to our patients?

In other words, decreasing the amount of sugar (or sugar cookies) to cancer cells causes them to die in as little as two hours. Even small decreases may work. In the face of toxic treatment, perhaps reducing sugar along with chemotherapy or radiation therapy is the necessary one-two punch to knock out cancer cells. As a radiation oncologist who is bombarding cancer cells with free radicals in an attempt to end their lives, perhaps it is not in my patients’ best interests to bombard them with sugar cookies (with or without pink frosting).

Sugar is to breast and other cancers as cigarettes are to lung cancer…

Our societal connection with poor food choices along with their promotion within our hospitals and cancer centers must end. As cancer centers, we should be promoting the message of a healthy diet and lifestyle in the hope that this message will permeate throughout the community. If we are the ones promoting the same unhealthy behaviors that can lead to cancer diagnosis and worse outcomes, how do we expect a change to occur?

And by the way, you won’t find any sugar cookies at my cancer center.

Because I not only voice my opinion to rant, I will be sending this to Phil Stover, CEO, Medical Oncology and Hematology Associates and will await his response.

pstover@cancercenterofiowa.com

Cheers to good health, good choices and creating positive change.  ~Sarah

 

 

 

 

 

How Am I?

In the midst of friends a few weeks ago, the topic of my writing and this blog came up.  Even though most people I come in contact with don’t ask me, it seems as though folks are curious as to how I’m doing.  So, I committed to writing an update and posting more of what’s going on in my life and in my head, probably more for me than anyone.  For now, an update on me.

I’m OK.  I feel like I have been pushed and shoved and bruised and stretched and stressed to my breaking point.  I try to keep a dark, heavy, ever-shifting weight above my shoulders.  It pushes me down and I’m at times frantic to keep it from crashing to the ground.  But my core remains.  My spine, my soul and my spirit have been exhausted but they’re intact even if they are still accumulating scars.

I believe my approach to life, my mindset, qualities and values remain fairly steady.  My circumstances continue to morph and I do my best to roll with them even though they’re sporadic and unpredictable.  I’ve been rocked by the death of my father.  I’m living with cancer.  I’m navigating and managing many different scenarios, planned events or unexpected crises, for my mom and brother for as long as I can and trying to get structure set up to keep them safe and cared for without me which is easier said than done.  This is my life.  Onward.

I am constantly trying to determine the best course for my own life and making decisions accordingly, some large, some small, all important.  I don’t know anyone who has walked a similar path and I feel like I’m in uncharted territory.  I know I’m alone in these decisions although I often pick people’s brains.  I’ve mostly accepted this way of life but I feel the weight of it and it is heavy.  The good news is that I’m still here and have decisions to make.  Dad’s advice often plays in my head, “do the best you can, let the rest go”.  Wise words in any situation, I’ve found.

I’m fortunate to have a great tribe.  I have procured some of the best humans and dogs I can imagine to hold close.  Our time together is medicine for my soul; listening, laughing, challenging each others’ thoughts, figuring out how we can be better, do better, holding each other accountable, creating adventures, appreciating each other for exactly who we are and expecting nothing less than unfettered authenticity during times of joy, pain and vulnerability.  They remind me that I’m more than grief, cancer and impending doom.  They engage the other parts of me that sometimes get shoved down, stifled or left behind.  They remind me that I have value in their lives, too.  That might be the best medicine of all.

All of that reminds me of going to yoga with Jana.  If you’ve even been to a yoga class and know how quiet it is, how it’s really about yourself, what you’re doing and no one else, you’ll appreciate how I can’t help but screw with her on occasion.  I watch her struggle and fidget and overthink getting into a position for way too long, finally settling in and then I whisper to her, hiss really, “you’re doing it wroooooooong” which startles her out of her pose and concentration while I’m trying to muffle my laughter.  And she still goes with me!  What a peach.

My days are full and when it’s not a family crisis or doctor appointment, I get as much good stuff in as I can. That doesn’t mean I’m not grieving and wounded from Dad’s death.  I still feel like I can’t let my mind go too far or I may crack into a million pieces that can never be put back together.  Unpredictable things will trigger memories or thoughts will permeate me like a thick fog of heavy sadness.

A friend asked me what I do with the thoughts I would’ve told Dad.  “I swallow them.”  He asked me why and I told him I don’t want to cry which is true but only in part.  I don’t mind crying.  It’s good for letting the sadness out and carrying it around is heavy on my soul.  But what I really don’t want to do is change the mood of whoever I’m with.  They have no idea that I’ve just been struck with an intense emotion or vivid memory and to start sobbing as we’re walking through Costco just spooks people.  If I’m alone, I let it out but those instances have been rare.  I usually just turn my head away and get quiet long enough to swallow whatever thought/feeling/emotion has surfaced and then re-engage.  Maybe I’m naive but I don’t think anyone has noticed.  No one has commented.

Don’t misinterpret.  I’m fine with honoring my emotions when I’m talking about Dad and the other person can see them coming.  But when they have no idea and we’re doing something fun, I really don’t want to change that trajectory, for them and for me.  I don’t want to make whatever we’re doing all of sudden become about me and my grief.  I can recalibrate and gather myself fairly quickly these days; plenty of practice.  Not that every time I talk of Dad, I cry or it’s something to be avoided.  Quite the opposite.  He gave me a lot to laugh about and his approach to life and to the world is something that I love to be reminded of.  I miss him and for good reason; he is well worth missing.

To close, a photo of Foxy and Lamby.  Until Foxy saves enough money for Glamour Shots, this will have to do.

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Time, Grief, Finding My Way

It’s been many days, a few weeks, since Dad died.  I try not to focus on dates or count days so I don’t get hung up on how long it’s been.  What I do know is that this is the longest I’ve gone without talking to him, hearing his voice.  No off-the-cuff, unadulterated remarks.  No clever responses.  No discussing current events.  No astute answers for all of my questions.  No wise, kind, funny, gentle words.  I find myself wanting to pick up the phone to share something with him but immediately give that thought a u-turn.  I don’t want to fall all the way into the chasm in my mind where he doesn’t exist in living terms.  I stop short and redirect.

I’ve had people ask me if it was a relief when he died.  I thought I might feel that but I didn’t.  Disintegration is the best word I can find.  I never felt like anything I did for Dad was a burden.  I wanted to do anything I could for him and make his life the best I could for as long as I could.  I knew that what I did for him I “got” to do.  I knew the day would come where I would no longer get to.

It’s weird being in my folks’ house without him.  Walking through the dining room, coming around the colonnade to his chair to see his surprised and smiling face, announcing “Sarah’s here!” without fail, usually followed by “How’d you get in here?” only to find it empty.  Void of his daily newspapers, the ones on his left were read and those on his right, yet to be thoroughly examined.  No articles cut out with his Swiss Army pocket knife that I got him, waiting to be shared with me.  His little radio he used to listen to local football games has been put on a shelf in the basement.

When people ask how Mom and me are doing, I tell them a vague truth.  We’re sad, adjusting, grieving, trying to take care of business and trying to find our way.  Dad had many things taken care of but there is still much to do.  There was no funeral or services of any kind as was Dad’s wish.  He didn’t want to take anyone’s time especially for something like dressing up and being sad.  Our days rolled from his death right into days that are empty of him, no pomp and circumstance.  There was only reading of cards which have now stopped arriving.

There is much to do these days, just different.  It’s surreal how I can float in the abyss of an existence without Dad but then be bombarded with the glaring reality of things to take care of, manage, navigate for Mom, my brother and myself. I attempt to give whatever feelings I have space to exist and be acknowledged although the flood I expected has yet to visit me.  I find things every day I’m grateful for and to laugh about but that doesn’t diminish the heaviness the envelopes me.  Death is a part of life and I’m grateful I got to see him to the end instead of the other way around.