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$Hard is Hard

A post about some of the difficult things going on in life… Why is it that writing about shitty things in your life is so much more difficult than writing about positive things? I can think of a million reasons why I shouldn’t write about them, and 999,999 of them are bullshit anxiety reasons about how my problems aren’t important enough to voice. Someone you write about will see it and recognize themselves and be upset with you or be hurt. Someone you wish would see it never will and it won’t help to say it if they don’t.

The worst offender for me is the idea that my problems are insignificant and I’m not important enough for anyone to truly care about how I feel. I am lucky enough to have family that loves me, even if they’re the cause of a lot of strife in my life. And most of them would be surprised if they knew how often I fantasize about suicide and how I could do it. How I’ve thought of driving to a field in the country and swallowing a bottle of pills in my car. How I thought about how I should bring the lawn and leaf trash bags to sit in so that when my bodily functions cease, I don’t permanently fuck up the car seats when I piss and shit myself.

Even worse would be the fact that I most often think about these things when my kid is going off on me. My own kid. I love him and I would die for him, and he’s had a really rough shake in life. And right now, I am all that he has. Family is an entire state away, he’s had shitty luck making friends in a new(ish) town, his dad and stepmom have abused him, he was raped by a cousin before he hit double digits, he’s been bullied in school. So I am his rock. I am the bucket into which he dumps his overflow of feelings, and often those feelings are full of sharp, painful words. All the ways in which he feels I’ve failed him, my own insecurities, all thrown in my bucket. And these days, my bucket is often almost at capacity.

My bucket has always been the reliable one into which others could dump their excess and lighten their own load. I always found ways to lighten my own bucket, and now I realize it was probably a convenient slow leak – things just tended to cool down with time for me, I could sleep on things for a night or two and generally the bothersome feeling ebbed on its own. As I’ve grown older, it’s like the wood has expanded and the slow leak has resolved itself.

Or perhaps it’s that feelings filled my bucket that were too big to drain through that small leak. Feelings that I had when I found out my boyfriend was sexting four of his exes, telling them he loved them, telling them terrible things about me. Feelings I had when I found out that while I was at my grandmother’s funeral, he was at home saving pictures of one of his exes to his Google Drive. Feelings about how he would gaslight me when I confronted him. Feelings about how shitty he was with my kid. Feelings about how I shouldn’t have let it happen, how I should have ended things the first time I found evidence of his infidelity and read the saved texts to one ex saying he had a dream that he asked her to marry him and she said yes.

On top of those feelings are all the feelings that settled in that bucket surrounding the deaths of my grandparents. They raised me from birth and were parents to me, more so than my birth parents were while I was growing up. I was the only person with my grandpa when he went to the ER with severe abdominal pain. I asked the doctor if it was an ulcer, and I’ll never forget the feelings that crashed in the bucket when he said, “Oh no, we’re pretty sure it’s cancer.” The feelings started feeling like rocks when I got a call from my aunt in the middle of the night telling me that my grandpa had died, just one week before my birthday. I always joke, even though it’s not a joke, that I must be the Angel of Death because so many people in my life have died the same month I was born. I will never forget walking into that room and seeing his waxy pallor, his eyes closed, and his mouth open, slack-jawed. He was bony and thin, because the cancer had eaten him away – literally. It ate a hole in his colon, and it was inoperable because his type of cancer could be transmitted through the air if they had tried to operate.

When we told my grandma, she closed her eyes and moaned, “noooo” over and over again. One week later, the night of my grandpa’s funeral, she was brought to the ER and it was discovered that one of her diabetic ulcers developed gangrene. If they amputated the leg, she likely never would have recovered. She opted for hospice instead. My bucket could barely hold the feelings I had when I had to work instead of being with my family at her bedside because just a few months prior, my old job had to lay me off due to miscalculations by the CFO. So I got a day of bereavement leave for each of their deaths, and any other time off was unpaid.  As a mother who barely made enough, I couldn’t afford not to work. So my anxiety swam through that full bucket every day, waiting for a call that I had missed it. Missed saying goodbye. Thankfully it happened while  almost all her family was by her side, myself included. And I had the good fortune to sing to her to try and help her relax so she could let go. And I held her hand while I watched her face, wide-eyed and mouth gasping, take her last breath and finally release into peace and stillness, three weeks to the day after my grandpa.

My grief was handled alone as I became the rock to everyone else. Handled isn’t even the right word for it. It went ignored as I let everyone else pour their excess into my bucket. And then all the terrible things began to happen. As it often does, death brought out the worst in some family members. Money became a motivator, and they acted as though each red cent of their painstakingly maintained insurance policies was a gasp of oxygen and they needed it to live. I wanted to strangle the breath from them and give it back to my grandparents. I wanted to punch them and scream that I’d give every dollar to have them back. More big feelings as I watched the ugly sides of my parents, the people I was supposed to lean on, show themselves. I cannot forget it, and I cannot let myself fully trust them ever again.

Then the blow that no parent is prepared for – finding out their child was abused. I can’t describe the feelings I had when my son told me, but I remember it like it was yesterday. And he asked me not to tell anyone who didn’t need to know. He was already afraid to tell me, because his abuser threatened to kill him if he ever told anyone else. And so beyond people who were necessary, no one knew what had happened. I respected his wish for silence, and I wouldn’t take it back for anything. But the weight of what happened to my bright, lovely, sunshine child was heavy. And fighting for justice within the legal system, alone, was hard as fuck. The justice system doesn’t do much when the perpetrator is a juvenile, and my son ended up having to jump through more hoops than anyone which led him to develop the feeling that he was being punished for what happened to him. He’s never truly recovered from that, and it infuriates me whenever I think about it.

He was diagnosed with generalized anxiety disorder and talk therapy wasn’t working. I decided to try medication to help him cope better with daily life while we continued talk therapy. Eight months later, he was on Prozac and his doctor doubled the dosage because he thought he was metabolizing it too quickly. He was wrong. One night it was like a switch flipped in my son, he went off and was threatening to stab us, laughing in my face as I cried, and  more. I told him I was going to have to have him committed to a treatment facility, and the switch flipped back. He broke down in tears, and begged me to get him help because he couldn’t control what was happening. I brought him to the ER to be admitted to inpatient treatment and the doctor said it was from too many video games and treated me like an idiot when I explained it was from an increased dosage of medication. We spent three days and two nights in the ER waiting for a bed, and were finally discharged with a referral for outpatient treatment.

 

The Christmas After Grandma Died

Three weeks ago my grandma fell and broke her neck.

Three weeks ago she was rushed to Peoria to see if they could fix her.

At 82 with severe Parkinson’s Disease, degenerative bone disease, (from which she’d lost a whole 12 inches off her height) dementia, and multiple other health problems, we didn’t know what the options were.

The surgeon suggested surgery to repair the fracture. He was hopeful that it would work. Do nothing and she could become a paraplegic if she so much as coughed too hard. Or she could live with the neck brace, which she hated, her lungs could fill up with fluid and she could develop pneumonia.

In such poor health, that’s not good.

We opted for surgery; really the only option. Grandma was scared but we all told her we loved her. I told her we would go dancing after she was done as she hasn’t walked in over two years.

She smiled and held our hands, said she loved us, and off she went.

Surgery went well and they were able to fix the break. That was not the major hurdle though. Even in good health, Grandma has never done well with anesthesia. Two days before her fall, the dentist didn’t even want to give her a local to fix a couple teeth as she’s allergic to Novocaine.

After surgery, she was put into a regular room and about an hour later, her vitals crashed.

She was gasping for breath. She looked so very scared. She gripped my hand as a wonderful nurse held the oxygen mask on her for close to an hour until they were able to get a bed ready in the Surgical ICU. Once she was settled in the ICU, we each took turns going to see Grandma.  She was on a ventilator to help her breathe and give the swelling a chance to go down after surgery.

This was against her wishes and she was miserable.

She had the vent in for 3 days until it was removed. She did so well.

They observed her for a day in the Surgical ICU (SICU), then transferred her down to another room for a few days.

When she was ready, she was discharged. They didn’t send her back to her assisted living apartment, but to a skilled nursing facility with hospice. Everyone came to visit. Friends, grandchildren, family, everyone. Someone was by her side 24/7. She would talk a little, barely a whisper. Grandma looked at pictures and had us to sing to her while we sat by her side. She told us that she saw my grandpa who’d passed away in 1978.

She told us all of the beautiful things she was seeing and hearing. It was amazing to listen to her.  She told us so many stories. She told us there would be no more pain there and no more wheelchairs. We all laughed and cried and held her hand.

On Tuesday November 16, Grandma took her last breath while my mom sang to her. My mom said it was very peaceful. Grandma wasn’t afraid like she had been in the hospital. I am so very thankful for that.  I miss her, maybe more than I can ever express.  My kids miss her too.  They are hurting.  I have given them songs that help them feel better, or so they say.  I don’t know where to go from here. I don’t know how to fix their hurt, or mine.

This holiday is especially going to be hard for me.

Last year I was upset because I wouldn’t get to spend it at Grandma’s house. At least I got to spend it with her.

Now I don’t even have that.

The Last Fight

During the month of August, Band Back Together is going to be publishing posts about loss and grief. These losses can be perceived or real as we know that loss is universal. We welcome you to share the stories of what and who you’ve lost – parents, children, animals, sisters, brothers. Please share your posts with us by clicking here.

This morning on the way into town, I had a flashback of a phone call. A phone call I’d had with hospice, seven months ago.

I remember it well. I was in the back room at my parents house where I’d been staying for the last week or so to help take care of my mom. She was sick. She had taken a turn for the worse. She’d had Stage 4 Colon Cancer for four years. It had been four years of fighting: first chemo and surgeries, and then natural medicine and a special diet.

She’d lived far longer than the doctors thought possible. She’d outlived the projections of every website and message board I’d visited in my obsessive need to understand what we were up against. Her CEA (tumor marker) numbers stayed low and nothing showed up in her monthly exams for a long time.

Then, the numbers started to creep up. After three years of nothing, they’d found a new spot on her liver.

It only took four months to go from finding that small spot to being in that back room on the phone with a lady from hospice.

Mom had been getting intravenous fluids the week before. As weak as she was, we would help her get dressed, get her to the car, one of us on each side to keep her from falling, drive her to the hospital and wait the two to three hours to get the fluids and then repeat the process to get her home.

We’d done this every day for a week, but the benefits of the fluids were starting to be countered by the difficulty of the journey. She was getting too sick to make the trip anymore. We’d talked to her doctor, the hospital, to anyone we could think of to figure out how to get the fluids to come to her. We felt certain there had to be a traveling nurse, or someone else who could administer the fluids. If the problem was that insurance or Medicare wouldn’t cover the cost, we were all more than willing to pay for it.

We just needed someone willing to do it.

When I asked the lady from hospice if that was something she could help us with, instead of answering my question, she asked some of her own: What did I think was really going on? What did I think the fluids were going to do for my mom? Would it be better to keep her going as long as we could, as she got sicker and sicker? Were we doing this for her, or were we doing this for ourselves?

We discussed that Mom’s body wasn’t benefiting from the fluids as well as we’d hoped. Her liver and kidneys had already begun to shut down, and we knew she was experiencing fluid retention. In fact, the fluids we were fighting so desperately for may have been doing more harm than good.

I had one of those moments when the blood thunders through your ears, the air is sucked from your lungs, and time slows down.

She was so sick. Every day she was getting sicker. Of course we knew she was going to die. But until that moment, I’d been in fight mode.

This was the first moment I realized the fight was really over.

The lady on the other end of the phone waited until I stopped crying, and we made arrangements for her to come over to talk to the rest of the family. We’d been fighting this disease aggressively for over four years. It was going to take some professional help to transition from that all-consuming fight to helping our Mom let go and…die.

She came over and we all gathered around the couch where Mom was laying, and we talked about the fact that she really was dying.

It was singularly the saddest discussion I’ve ever been a participant in. Everyone left my sister and I alone with Mom. We talked about how this was really it. We told her how much we loved her, how we would be there with her through it all, and how we would be there to see her on the other side.

I wonder how she felt at that moment.

I think about that moment a lot. I regret that moment sometimes. I wish we’d stayed in denial about her death so we’d never have had that discussion. Once it was out there, it seemed like any fight she had went away. She was ready for it to be over.

My sister, my grown niece and nephew, my aunt and I all took shifts staying with her and Dad.  At first we gently tried to get her to eat and drink, but in retrospect that may have been a lingering need to fight for her life. Eventually, even that stopped.

I’d stay for two days, then leave for one or two. I would go to work on the days I was away. Work became a sanctuary where my mind was otherwise occupied. As I drove the hour and a half back to my parents, I felt the heaviness increase until I had to drag myself up the steps and into their house.

We’d brought a hospital bed into their living room so I’d see her the minute I opened the door. Every time I opened that door, I wanted to recoil in horror. Our mom was laying in that bed dying! It couldn’t have felt more surreal.

By then, she was drugged and asleep, and unable to talk much even while awake. It was a living nightmare.

A strange numb detachment descended upon me. I’ve never been like that my whole life. It was like my brain just shut parts of itself off. I felt made of stone.

We held her hand. We brushed the hair out of her face. We put chapstick on her lips and swabs of water in her mouth. We told her how much we loved her over and over and told her we were going to be okay. We promised that we would never stop talking about her to our kids so they would always remember her. We talked about our hope for the future when we would all be together again and she would be healthy.

I hope that she felt some comfort from us being there with her. I know she was scared; her brow and face would be scrunched up with anxiety and pain, even though she couldn’t voice it. The best we could do was give her the shots of pain and anxiety medication that hospice had left for her.

The last time I saw her alive, the truth is, I knew it would be the last time.

I should have stayed. I should have stayed. I should have stayed.

But when my niece came over for her shift, I left. To escape the horror, the impending doom, and the despair, I went back to my house. The next morning, I talked to my niece and she told me that Mom’s hands were getting colder, and I knew I should go back. I knew the signs of impending death by heart; I’d read them over and over in hopes of preparing myself.

But I didn’t go back. I went to work instead. My sister called me at work to let me know she was at Mom’s. She held the phone to Mom’s ear so I could tell her that I love her. She couldn’t talk, but I could hear her breathing loud in an attempt (I choose to believe this) to communicate with me. My sister then called my brother and they had a similar interaction.

My sister was on one side of Mom holding her hand, and my Mom’s baby sister was on her other side holding her hand when it started. They told her it was okay to let go.

And she did.

I am so sad I wasn’t there when it happened.

I am also grateful.

Sam’s Fight Against Triple Negative Metaplastic Breast Cancer

Cancer care is expensive.

Fortunately, my daughter Sam, who has ben recently diagnosed with Triple Negative Breast Cancer, has medical insurance through her employer.

As long as she can keep her job during all of her treatment, it covers a fair amount of some of her costs.  At least after her catastrophic cap was met for the year (didn’t take too long to reach it).

We all consider the deductibles and copays, and prescription copays in our lives, but be sure to check your policy on investigative drugs. Medical trials. Travel and time off work. Did you know that many insurances do not cover care if the “Standard of Care” doesn’t work? Some don’t cover food unless it’s eating out instead of buying a loaf of bread and lunch meat. Some only will cover hotel rates available to AAA members in the 1950s. Some will pay a portion of their “idea” of what your gas should cost, but only on the DATE of your appointment, even if you’ve had to drive out of state the day before or after.

Pray you never need to know the intricacies of your health insurance.  Even if you mange to jump though the right hoops and snag every receipt, it would take a team of dedicated government trained legal assistants to maneuver through the paperwork. Oh, and then you can wait for over a year for any reimbursement.

Moral of the story.

EVERYONE.

Including your 20-something year old child should have some type of additional policies, because my 20-something had never been sick in her  life. She had to use her insurance for the first time and we learned a very hard lesson: chronic health issues and cancer do NOT care about your age, your gender,  your race, your educational level, or your income bracket. Buy that add-on policy you pray you never have to use. I mean, yeah, it’s going to crimp on picking up that name brand mayonnaise, skip a few cups of designer coffee or don’t upgrade your phone to get it, because you don’t know how important it can be.

Pray you never need it, never have to walk this walk or fight this fight while being financially sucker punched at every turn.

MD Anderson Infusion Therapy

Traveling 400 miles for treatment in Houston, TX, at MD Anderson alone adds up. Lodging is expensive. On her third trip out of state, she and I were in Houston away from home and family for several weeks straight. After that, we’ve got weekly visits for treatment and tests will go on for the foreseeable future.

Imagine you are just finishing college. You’ve invested all these years into student loans and grades and worked from the bottom up in a field helping others, so you’d be all set in your field after just one more test. You’re 20-something, but you’re invincible; you’ve never been sick.

You’ve got all your ducks in a row and have considered every possible decision.

You have spent your entire life on college student budget working your own way through school, accumulating debt, but going into a field where you are guaranteed to be a super star. Soon, you are going to kick open the doors and rock the world.

You dream of the vacations you didn’t take because you had to write papers and pay for copies and laundry, and you begin to plan them in your head. You go to sleep, dreaming of how great it’s all going to be now that you’re done. Once that last test is passed, you can consider your future. You have dreamy conversations with your parents about how one day not only will you buy a house, but this will have a little retirement cottage in the back for them, and they won’t have to worry about anything.

You tell your baby brother to keep up his grades, you bribe him and tell him to work his way to and through college, but you will be there for him if there are any hiccups along the way.

Your phone rings on a Friday afternoon as you’re in a store looking for a pink bow tie for your little brother’s prom coming up this weekend. It’s the doctor you saw, and out of nowhere, he says you have cancer and he will see you again next week. Just like that.

You’re alone. All alone.

You’re holding a bow tie for the baby brother you adore and have dressed his entire life.  Your life just changed. The air is sucked out of the room, and nothing moves.  You walk over to the dress shirts and begin looking for his size, but now you can’t remember for sure if he has that adorable little boy neck or of he has now grown into a lumberjack.

You call your mom to check, but instead, “I have cancer” falls out of your mouth.

Everyone’s life just changed and it all hits you.

Imagine dropping everything to live in a city far away for a month while still having to pay rent, utilities, and a car payment. Leaving your bed, pets, plants, and family behind. Being afraid of checking the mail or answering the phone: there will be bills in there with numbers that look like jackpots for the PowerBall.

Seeing things you never wanted to see. Learning a language you didn’t want to learn (Cancer Speak).  Realizing you aren’t in invincible 20-something with the world at your feet, that you now must depend on the kindness of strangers when you don’t even recognize yourself in the mirror.

In the meantime, you travel every week to Texas, three states away, sleep, eat, get prescriptions, anything else you might need. Make sure you keep your job so you can keep your insurance and have a life when this is all over. Oh, also, you’re fighting cancer, so we are going to dump some of the most horrible chemical combinations known to mankind into your body and you are going to be sicker than you could ever possibly imagine.

That is Sam’s life now.

The simple fact is,  WE ARE LUCKY.

Lucky that our family is tight. We pull together we pull through. All of my kids have sacrificed what they have and the course of their futures for family members and this is no exception. WE ARE LUCKY.

Samantha’s cancer is rare, which means she’s interesting to the scientific world, which opens us up to the option of seeing the Most Genius Medical people on the planet who study her type of Cancer. WE ARE LUCKY that we were able to get together the resources to get her to the people who could try to help her in the first 3 months.

WE ARE LUCKY that friends, family, and strangers have taken it upon themselves to raise money, cook dinner, open their homes, offer a ride, send a card, give a hug, and pray for us.

We don’t feel lucky at times. 

We are simply terrified, we know the first chemo regimen and treatment plan failed. We see the doctors and nurses faces when they hear her diagnosis. We realize what it means to be in trials, research programs, and testing studies. We know that we can only get the only hope kind of help out of state. We don’t feel very lucky because we know as a family that as the expenses, bills, costs pile up, the income has gone down on several fronts.  Things like car repairs, broken air conditioners and power going out don’t stop because of cancer.

We don’t feel lucky because there’s interest on the credit cards and interest on the payments, and we are paddling like a herd of ducks in a hurricane just to get thru every day. We don’t feel lucky because it’s unnatural, it’s unnatural and soul-emptying to be a parent whose child has cancer. We don’t feel lucky that ”she’s grown up.”

We are her parents and she will always be our child. We don’t feel lucky that “at least she doesn’t have kids,” because she loves children and wanted to be a foster mom, because that’s who she is.

We don’t feel lucky because no one who has cancer is lucky.

WE DO FEEL loved, humbled, grateful, and blessed.

An End And A Beginning

I saw the lights on the ceiling. I felt the tear. The nurse held my hand with saintly love as I sobbed. A part of me died in that moment, a ripple through the eons.

I was 21 and a newly graduated nurse when I went through my abortion and had landed a prestigious hospital job. My mum was accidentally pregnant at the time at 40 with my brother who I later helped to deliver with the midwife (after I had undergone my abortion)

I freaked out. I couldn’t move back home in a small town with a pregnant mother. My boyfriend said he wasn’t ready for a child and we couldn’t afford it (I later discovered he was wealthy and had not been honest with me). He was living far away at the time going to university.

As he slept in my room one night at the nursing quarters against the rules of no men, we were discussing what to do. I got caught with him in my room and I was kicked out by the nun. Pregnant, I went to house hunt by day after my night shift work. The nun who found us gave me one week to find a place after I begged her. I was scared. I didn’t know what to do. I didn’t tell a soul.

My boyfriend booked a hotel for the week as I was homeless and I went through with the abortion. I didn’t want to go through with it but I was so scared, alone and overwhelmed. I always said I would have a child if I accidentally became pregnant, but I just didn’t realize what it was actually like to be in that position.

The first doctor I approached rejected to care for me due to his religious beliefs so I had to hunt for a doctor who would.

I went to get counselling afterwards and was paired with another religious man who rejected me so I had to keep searching for help. I gave up.

I went back to work and it was a very hard year. I saved a few lives and I decided to work in hospice to become more familiar with death. I nurtured people through their losses.

Many hard, lonely years accompanied me with multiple instances of sexual assault and trauma I started to have difficulties coping. I always comforted myself with the idea that losing a child to help others may be excusable as a choice but when I left my career, in those last days I sat down by my friends nieces side who was losing her new baby that had just been born. It was dying in her arms and her tears dropped on that babies face. I watched that baby die as I said goodbye to my career. She didn’t know of my past and now I hear she wants to be a nurse. The chain continues.

My whole family said I was always the mothering, nurturing type and I would have the most kids. I am childless and not married. Tortured by bad memories. Too lost for words.

You don’t forget but you learn to live with it. Its a silent shame for me but I see now with my history of abuse I needed to feel some control over my body. I don’t feel it was the answer now, and in retrospect I would like to say I had all this courage to stand up to this invisible community who bad mouthed people but I was a young vulnerable frightened girl. While I was being accused of being a baby murderer I was saving their lives in hospital.

I think now about it more in philosophical ways. The things we should terminate in our minds and and how a new beginning can start for us to live a happier life. My God believes in redemption and love.

Year 11

t was 11 years ago today.

I sat in the middle bedroom at my Granny’s house holding his hand. His breathing was shallow and staggered. He had faded in and out of consciousness several times that evening and we had taken turns sitting with him. We knew he wasn’t in any pain and we weren’t exactly sure he even knew we were there. But we like to think he did. After a very long day and evening, and a day or two prior of much of the same, we knew the time was near.

It was decided by one of us, who exactly I can’t remember and it really doesn’t matter, that maybe we should all go in and tell him it was okay to go. We knew he was ready and it was okay. No matter how many times I say it was okay, it really wasn’t. And still isn’t. Just don’t tell my Dad that.

They tell you that people in a coma or not in a real state of consciousness can still hear you if you talk to them. I know now they are right. Either that, or God heard us and passed the message on to Dad.

It wasn’t more than a few minutes after that, although it seemed like much more, he slipped away. Hearing from us that we were okay and it was time allowed him to let go as well. It was very peaceful. It was heartbreakingly sad. It was something I would never wish on anyone else and at the same time a memory I would EVER want to trade away.

It was 11 years ago today and it still feels like yesterday.

It was 11 years ago and I still miss him terribly.

I love you, Dad.