Memories of my Mom

This is the story of the last weeks with my Mom before she died from cancer. As usual I’m unapologetically sweary.

(You’ll get the reference. My Mom would’ve loved this!)

I was living in Texas when I got a call from the director of the ICU at the hospital up in the Midwest where she lived at the time.  There had been a huge mistake. On a 911 call to my Mom’s house that her neighbor made upon finding her unresponsive, the EMTs did not search for her standing DNR in the designated places. They started morphine, oxygen and other life saving techniques on an end stage cancer patient with a DNR. 

The Director said, “the ER staff, also, didn’t research her file properly and intubated her.” I just about fell over. I yelled at her, “what do you mean you intubated her??” 

After quite a conversation (that involved me running upstairs to my bedroom, crying, hiding from my kids and generally trying to keep myself from falling apart) I made the plan that the ICU staff would not extubate her until I got there so she wouldn’t be with strangers on a machine when she died. 

Not only did I learn my mother had died and coded but they brought her back and now she was on full life support. They were keeping her alive and now it was my responsibility to take that life away. 

I flew north. I got held overnight due to snow. When I got there the next day I walked to her room and she was sitting up on her bed. 

SITTING THE FUCK UP. 

Her memory was severely impaired. She didn’t know who I was, why she was inpatient. She kept ripping her IVs out. She was highly agitated and stressed. Anxious. It took hours but the doctors booted her out to my care. 

Uhhhm. What? What was that? 

Oh, right, because I’m a social worker and a therapist. I have the skill set for this. It doesn’t matter that this is my mother dying after you people fucked up and brought her back to life and she’s not the same.

The nurse took me aside and told me she gave my mom - maybe- 14 days to live. 

She was dead in 12. 

I was so grateful to that nurse. I told my Mom the day after we got home with hospice what the nurse said. My mom asked how much time she had. The hospice nurse wasn’t going to answer her but I did.  With love but I was direct. I’ll never forget the look in her eyes when the gravity of it hit her. I hope I never have to tell someone I love they have a couple weeks to live ever again. 

I told her I wouldn’t leave her side until she left mine. I’ve always hoped that made her feel a little comfort. 

The next 12 days were filled with lawyers, signing wills, paperwork. By day 3 that was done. By day 4 my mom stopped seeing anyone to say their goodbyes. She couldn’t do it. 

We stayed up every night until 3am and watched Seinfeld or Fraser because she believed each day should end with a laugh. We talked for hours and hours. She apologized and healed past traumas she causedg in my childhood. She admitted things I never knew. She surprised me over and over. 

She had always wanted to eat pie with a fork directly out of its pan. She’d never done it because it wasn’t “ladylike” or “proper”. What’s hilarious is that while my Mom followed Molly Manners she was a Broad thru and thru. These bits and pieces were a big part of who she was. How she was raised. 

Back to Pie. Her fave was pecan. Everyday for 12 days I bought fresh muffins from the bakery for her breakfast. Well it became pie day. I brought home a pecan pie. I placed it in front of her with a fork, napkin, a glass of milk and said, “here you go!” 

After nibbling on one toasted nut and giggling like she was being really naughty she admitted she just “couldn’t do it”. This made me realize that for all of her hot air she blew, the front she put up throughout my life of being tough, knowing it all, nothing ever bothered her, now she’s the dying woman who can’t take a bite of pie out of the middle of the tin because she’d be breaking a 50 year old rule. 

What did I do? What I always did. I walked over to her, hand over hand as I cheekily smiled at her and said, “here. This is how you do it” as I literally had my hand “show” her hand how to scoop a huge, messy, gooey piece right out of the center! She smiled and said, “that’s my girl! Hey? Where’s the ice cream?”

She needed permission. Yes, from her youngest daughter but I was there. I showed up. I was bearing witness to the most intimate moments of her life. The very last breaths, words, actions and eating pies from the inside out. 

Forward to the 2 hours before she died. 

She’d been unconscious for a few days. I was alone with her. Hospice only came 1 hour a day. I could’ve taken her to a hospice facility but I promised her I wouldn’t. I had gone 72 hours with 2 hours of broken sleep. I was starting to lose it for all the reasons you can imagine. 

I didn’t know how loud the dying are. She was so extremely loud. All the time. There were so few breaks in her mumbling. No words. Vocalizations. It was disturbing and upsetting. I was able to walk her even in her advanced state from her bed to living room. On that last night I was administering liquid morphine every hour. I was talking to hospice and we were in the middle of a storm. The next door neighbor came over. She was my mom’s bestie. She said goodbye to her. She went home. 

I told my mom I was with her but I had to sleep. I told her it was ok to die while I slept. That I was right there and not to be afraid. 

****As an aside She was an atheist (hated the church) and the day before shockingly in her unconscious state she talked and said “Kirk...Sheryl’s here (Dad and sister)... a man... There there...there...Jesus... over there to help” those were her last words. It blew me away! My whole life she’d never talked like this. 

So, I conked out and when I woke up 45 minutes later the energy was completely different in the room. I knew she was gone before I looked at her. I felt entirely alone. And I was. 

The funeral home couldn’t come for 2.5 hours because of the roads. She started changing color. It was hard for me to look at her as she started turning yellowish grey. I mean - she was GONE. This in front of me was her vessel. A bag of bones nothing more. 

It was truly one of the most deeply profound experiences of my life and also disturbing in a few ways. 

I was alone through the experience. I had a friend here or there. I had no family. It was me. It was endearing and sweet and painful and funny and so hard and I’m glad to have most of the memories. 

I miss her. She died at 68. She survived uterine cancer at 30. Diagnosed with 2 types of breast cancer at 61. Then developed COPD with primary colon cancer with the Breadt cancer that killed her in the end. 

I’m glad for every moment for those 12 days. Especially pie and Seinfeld. 

Thanks for reading. 

I’m getting business out of the way first. I’ve had 2 more neurosurgeries. I have neuromodulators in my face. One on each side of my face. My son says I’m a cyborg.

 

I should be so cool. 

Only if I had at least one eye that shot lasers or glitter. That would make me a real cyborg. He wants the laser. I’m opting for the glitter. The “hardware” are wires that go along the trigeminal nerve along my jaw, through my cheek, and through my forehead. They wrap together at my ear. One band goes to my brain and another goes down into my chest wall where there is a battery that keeps the whole shebang working. I get to recharge my batteries once a week for an hour each. I lay still and put this  large, round, rubber, circular contraption over the surgical site that picks up the battery’s signal. I’m thinking, “where’s the Bluetooth??” 

I am at 80% pain relief in my cheeks, teeth, lips. Fucking unreal. Now I’m waiting for researchers to get a move on to find something to help TN behind the eyes. 

Enough getting down to health business blahblahblah... 

I have a car now. I drove down the road for the first time and my thought was, “this. is. freedom.” I had almost lost that piece of myself. So many pieces buried. Sometimes they pop out. Let me know they’re still present. That I haven’t destroyed them. Or the illness/pain didn’t strangle them. That happens. I understand how it happens. I’ve never lost hope that I will get better because I won’t ever stop looking for treatment. 

Take THAT Bastard pain. 

One thing I find I struggle with is finding purpose. I was a clinician for years. Since 7th grade I knew that was my journey. Once illness hit, my practice was permanently closed in 6 months. People immediately ask me now about work now that I’m better. As if that’s all we are. Some title. A paycheck. I loved what I did. I miss it but I know realistically I’m not well enough to work. I do know I have my life. I have love. Determination. Loyalty. Expression of emotion. Intelligence. Humor. So many other things. Illness doesn’t take that from you unless you allow it. Its complex. It’s an achingly slow process but ultimately you have to decide if you choose misery or joy. 

I choose joy. 

Surgeons did a good job!! 

Numbers 4 and 5

Goodness. Here’s a catch up from last fall and my Trigeminal Neuralgia...


I had Neurosurgery in November 2017. It was my 3rd and not yet my final. My surgeon was Dr. McGregor at the James Cancer Center at Ohio State University. This man.... where do I begin? He’s full of compassion, kindness, care and has such a gentle spirit. In addition to being one of the best in his field I feel fortunate to have found him.

The surgery has a 98% success rate at getting rid of pain by 80%+. I fell into the 2% where it made my facial pain far worse and brought on new symptoms I didn’t have before. I now have electrical shocks through my teeth and gums on the right side of my face at least 50% of the day. Taking a shower is proving to be interesting as water falling down my face can bring on a full TN attack. I take my chances.

Now that 6 months has passed I have scheduled back to back neurosurgeries at the end of the month. I’m having Neuromodulation devices implanted near my brain stem, my face and my spinal cord. These surgeries will be done by a colleague of Dr. McGregor. It’s considered experimental. I’m perfectly ok with that.

Upon seeing my newest MRI my new surgeon, Dr. D, told me that my Trigeminal Neuralgia has actually changed into a neuropathy. This news was devastating. I have 3 kinds of nerve damage in my face. Nothing is paralyzed and I’m grateful for that. He asked me what was my best case scenario for pain improvement after this procedure. I told him 10%. The edge would be off and I’d be able to function. He’s hoping to give me 30%. If I get 5% I’ll see it as a success.

If this doesn’t work then the implants are removed. I’ll ask about brain radiation. Ketamine infusions. Pain pumps. There are more options. I won’t give up.

In the meantime I am meditating, praying, visualizing, reading, listening to Irish musicians (Dermot Kennedy is a favorite)

https://m.youtube.com/watch?v=iad-ixZRlK4

After reading this you can imagine how exhausted I am. I won’t lie. The online communities are wonderful and there’s so much information to learn on making your life simple. I hired a housekeeper which takes so much pressure off. My slow cooker is my best friend. Having the laundry room across from my bedroom is beyond convenient. My twins have become very independent over the summer, which is a tremendous help.

I literally treasure every email and text I receive. To be thought of, written to... feels special. I’m grateful to those who reach out.

I apologize for any spelling/grammar mistakes. I need to sleep. Nite all.

Ohio Part 1

I found a renowned neurosurgeon down in Ohio. I'm trying not to get my hopes up but I admit I am. That is not a good thing. The worst thing that comes from hope in this situation is crushing disappointment, again. The best is more treatment and an expectation that it will work. When I say crushing disappointment I mean that literally.  It's been a total of 5 years of treatment, pain, prayer, help, judgement, surgeries, complications, infections, more meds... you get what I'm saying.

Don't misunderstand and I think it's easy to misunderstand. When someone is chronically ill it's easy to read those words and come to the conclusion that person is trying to gain sympathy or they are wallowing in self pity. That couldn't be farther from the truth.  It's our reality - it's my reality.

I've never experienced anything like I have these past 11 months.  To say I've learned a thing about self-care is an understatement.

I have rediscovered old music, reading & audiobooks. I’m redesigning my bedroom, working through my pain with meditation and pretty much overdosing on Netflix series.  It's all about distraction when the pain comes. When it comes now it's fast and furious. It can come with a layer of numbness on my cheek which feel bizarre. Underneath is an electrical storm (of pain level 8-10) zaps of pain that come one after another after another. These last for a few hours to a few days without any pause. That's why I'm hopeful for another neurosurgery. 

This surgeon does a procedure where he implants a device in the base of the brain that senses pain coming on and stops it before it continues throughout the nervous system. Many brain tumor patients have this surgery which I may qualify for but I don't know how effective it would be on my trigeminal neuralgia. Another possibility is another Microvascular Decompression. I've had this neurosurgery on both sides of my brain already.  Sometimes, doctors will do the surgery twice. I had a terrible experience after my last MVD on my left side and I remember telling Jacob, "I will never let anyone ever touch my skull again, ever!" Here I am. Determined for this new surgeon to perform this procedure once again. Desperate people do desperate things but I won't regret it.

I'm in my hotel room in Ohio right now. I had a few hours in a fun pub with some great food and girlie cocktails. It felt... normal. I didn't feel like a patient. I didn't feel sick on the surface. I always hurt, right? Especially today. I had to take percoset today but I truly had invisible diseases. I got "gussied up" as my Grandma used to call it and went out. I hoped people would see me as someone who was like them.

I try not to think of myself before my diagnosis. How I was. It just doesn't help me.  I have enough judgement in my life that I don't need my own voice adding to it. I'm working so hard on being gentle with myself, staying in the present and honoring my body. It's cliché but none of us know what life will throw at us.

I remember when the boys were little and were hospitalized in ICU every year until they were 7 years old. I felt so scared for their little lives. They were critically ill on more than one occasion. Jacob came close to death at 4 months old. I made a decision early on: I could either choose to be fearful that they could die an early death or I could enjoy their lives each and every day, accepting I have no control over anything. I had to let that fear go. It was casting a cloud over everything.  I wasn’t able to truly let that fear disappear - with chronically sick children that’s how it works and boy have they been sick - but it doesn’t have control of me. It doesn’t create anxiety in me like it used to.

Baby steps. Right?

Writing, reflection, renewing

I'm writing. Finally. I'm writing the book I always was told I should write; the book I have wanted to write since I was 7 years old. Even on days where my pain is not cooperating I find even a few moments to put pen to paper (yes, I'm writing this long hand) and I write. If you stop, you get out of the habit. You have to do it every single day. Even if it's not on my book, I write about something. People often ask what the story is about and I hesitate to tell them. Just like I hesitate here. Writing, for me, has brought me to this place of reliving some of my greatest joys. My deepest love. Also, some of my deepest pain and I stay there for days because I'm not finished with what I have to say. I'm still wrestling with the characters. Their interaction. What needs to be worked out or experienced.  It's not something you can "turn off". I dig deep in my own stuff to relate that on paper so it will be real to the reader.

Even if that reader is only me I want it to be real. To make sense.

I've been writing since I was a kid: journaling faithfully since 1st grade. Short stories since 2nd grade. I wrote a dreadful play in 4th grade and some neighborhood kids and I acted it out in my garage for my Mom one summer. It was so bad but I loved writing it.

My mom used to buy those journals with the gold filled ends that sealed the pages together. It also had a tiny piece of leather and a cheap lock to scare off any would be peeker into your most deepest hearts desire. Whatever that could be for a grade school girl. My older sister was notorious for blatantly busting that lock wide open and revealing my secrets inside. Although she'd get punished I knew I had to be crafty in hiding my thoughts.

I started doing it in plain sight.

I would find an old school spiral bound notebook and make journal entries in the middle pages, tucked safely inside. No one was the wiser and it worked for years.

A few months back I was cleaning out a memorabilia box. In it I found a 7th grade science lab notebook. In it we're journal entries woven throughout. A paragraph here; two there. It was subtle. Truly, there was something quite powerful that a child figured this out. The content became extremely revealing, vulnerable, honest and sometimes silly. I talked about my crushes, friendships, my constant, soul crushing anxiety. My fear of my mother's alcoholism. My sister's drug abuse and having to be the one piece of pride to prove to my parents they did something right with their kids.

I'm back in that place again. Trying to keep boundaries around my head and heart but it's difficult. Those wounds never go away. You make room for the pain and live life to the best of your ability.
I try to cut myself slack although to be honest I'm not good at it. I'm harsh on myself. My inner dialogue is downright brutal at times. That is a work in progress, too.

I've written research articles and that is my go to place. I'm comfortable there. I find it relaxing. Even fun. This type of writing is wonderful in so many ways and it's so damned painful in so many ways. It's not cathartic. It keeps me in misery at times but I'm really ok with it. That's how this story gets told. Don't misunderstand. It's not a miserable story. There are pieces that are excruciating that characters experience. I want the reader to relate to their own personal experiences of pain.

Joy will juxtapose the pain. Balance is always needed and good will always triumph. In some stories there is a price to pay for it.

That's it for now.  Where I've been. Where I'm heading. Onward.

To my Peanuthead

Start over no matter where you stop. Never quit quitting. If I can do it so can you. Start somewhere. Keep going. Have you tried this? Have you gone there? Read this? Taken that? Prayed? Praying doesn't work because no God would allow this to happen. You are so strong. Keep going. You can do this. ***Silence....Retreat....Withdrawl....Silence*** You may be reading this and interpreting this in many ways. I'll say this: acceptance is beyond difficult. It's challenging for the recipient of the challenge and for the loved ones.

 I had a very close friend who died of breast cancer years ago. She was in her 30s. I remember many, many flights to Cincinnati from Grand Rapids. Driving every other weekend as often as possible. I was in grad school getting my masters and she was getting her PhD when she had gotten diagnosed. People thought we were sisters. I miss her. She was hilarious. We had inside jokes and she could make me laugh in a way no one else could. She understood me and any kind of emotional suffering without me having to say a word. She was kind, compassionate, generous, giving, beautiful, loved music, and fashion. On a day like today, I would love to have her over so she could slurp coffee (like she would) out of her saucer because she overfilled her antique, thrift store find, coffee cup. Sip, and always, ALWAYS, spill on her shirt. Then she would ask to borrow another one, "Of course, honey." We'd finally get down to business and talk about what was going on. My anger, irritability, the need to throw breakable things into a wall.  Or her our latest crushes which was the cause of my irritability.  We'd laugh so much over it all. We knew how how temporary it was because we knew who we really loved and neither one of us were with them.

We were 21-22 years old. The world was ahead of us. There was no cancer. No neurosurgeries for either one of us: "Peanut I don't want you to see my crainiotomy scar from my metastasis. It will only make you sad." I've had 2 crainiotomies and I've often wondered the sadness she would feel knowing that. I know she would know we were bonded in a way others weren't. She was my hero.

 I love this quote:

When she died I was relieved for her. She had wanted to die for a long time. We had discussed her death for the last year of her life and especially that last month. She was really concerned about her other friends and how they might respond to her leaving this stage of existing. She knew I was truly in a place where I had accepted her death as part of her life.  Of course it was cruel, unjust, sorrowful and grief filled. I felt blessed that we had the relationship we did that we could be truly bare bones, no bullshit honest with each other so that whatever she faced (tests, chemo, radiation, surgery, pills, on and on... Her funeral plans)... We faced it together.

I did not attend her funeral which may have some of you wondering. She made me promise her I wouldn't attend. I went to visit her 2 weeks prior to her death with 3 other of her closest friends and we had a great time.  The promise we made happened prior to this visit and we had discussed it often. The reasons don't matter. I put together a very small celebration of her life with a few people who loved her complete with photos, letters, pictures and Jameson. A proud Irish girl has to be toasted and sent off in the proper way.   I hope I've done her justice here and given all of you a piece of my mind's eye into my friendship with her. I will always love her so much.

My last 3 things about her: she loved gin and tonics, clubbing, photography, sleeping with the comforter wrapped around her head, over cooking chicken, spending too much money on me, Mexican food, travel,  and French movies that I made fun of later. I guess that's more than 3. Ha! Here are 2 pics. The B&W is one she would love. The other is well...

All things medicinal.

 Yes

My thoughts are bouncing, ping-ponging off my broken, reshaped skull. It seems that I can't grab them long enough to find the meaning or feeling or.. What... In them. 

Or to even finish them long enough to have proper grammar. Don't judge. The struggle is real today. 

I've been taking "selfies" (ugh how I detest that word) everyday. It's a kind of digital journal. I have this perception of my external self: good, bad or indifferent we all do. This illness, how it effects my body will Med side effects, my facial swelling/redness with pain... These things have worn me down. After awhile of wearing black yoga pants, a black tshirt, and a tie jacket I don't feel too sexy for this blog. Know-what-I'm-sayin'?

This was me about a week ago. I had been in bed, in pain. This is serious bed head. Ha! It's natural, it's me, I'm in a crappy tshirt. 😃 #painsucksbutgreathairneverdoes #greathairmakesallthingspossible #itakenocreditforthecurls #thankmomsDNAforthehair 

This morning I was thinking about some heady stuff. Love. Friendship. Regret. Sacrifice. Will I regret down the road? 

I have made it a policy, my life philosophy, to never regret my choices. It's the decisions I don't make that I will feel horrible about so I follow my heart. As much as life allows. And I give myself a wide birth because we only do this once. I'm 49. My family is dead. I have kids who Need a role model and not someone else's idea of what that should be. 

80s flashback with this most kick ass sweater. It's heather gray AND off the shoulder! Holy Siouxie and the Banshees Batman! I love this thing. Makes me aaaalllmosssst appreciate the point of winter but...I won't go that far. 

As I waited for my morning Joe to brew, a lack of caffeine meant little ability to stop the onslaught of honest thoughts and feelings rattling through my heart.  *shakes fist to the Heavens* Love. Lonliness. Expectations. Anger. Friendship. Surprise. 

So many things to shuffle. To process. To wrestle with. 

Throughout the day the meaning would come to me from a long felt riddle I have been dealing with. 

Today 3 things came to me:

1) I'm angry about a few things. 

2) I thought I'd be in a different place at 49. 

3) I thought I wouldn't be sick anymore at this point. 

I can't regret these things. They just... Are.