Down Part I.. The pain

As a healthcare provider, I look back and wonder how I didn’t see it. How I didn’t notice the obvious signs of decline or at least a serious illness in my dad. Perhaps because my dad’s life was filled with so much hidden pain that this new hidden pain was barely perceptible over the mask he already wore on a daily basis.
My dad retired in 2010. Thirty years after first working for the federal government in the role of some sort of budget officer or analysist. He was only 54 years old. And he didn’t retire because he had a desire to stop working or had a work ethic that was not pristine. He retired because he hurt.
He was crippled at home with arthritis. His gout got so bad that the knots on his fingers swelled so immensely he could not maneuver his fingers to eat or button up his own shirts. His knees buckled under his weight and he often used a cane to get around at home. His puffy, fluid filled feet no longer even fit in his tennis shoes, and when he did manage to get them on his feet, mom had to get them tied for him.
He could no longer take the grueling walk from the parking lot into the pentagon, yet he hid his cane in the back seat, drove to work largely thanks to cruise control and a prayer, and somehow limped his way inside without his coworkers ever finding out. He was a strong, strong man.
So he retired. He got a little bit fatter and a little bit weaker and a lot more stiff and pained. But my mom was always by his side to help with the little things he could no longer do and no one was the wiser.
The pain was so great, he could barely get up from the recliner chair most days, but he continued to be strong and stoic and took care of most of what needed to be taken care of without ever revealing his true misery to anyone. Fast forward to 2015. Dad was having stomach aches. Some indigestion and diarrhea. He went to his primary care doctor who gave him some fiber tablets and told him he would be fine.
We booked tickets to my graduation from my graduate program. Surely, dad would never miss an opportunity to cheer on and show pride for his little girl. But as the day grew closer, it became clear that dad did not intend to come. Not because he didn’t want to, but because he was embarrassed of his need for such frequent bathroom stops. So he did not come and he visited the doctor again who ordered some labs and more fiber and sent him on his way.
A few months later dad had trouble breathing. His head and neck swelled up to the size of a watermelon. His airway and breathing were quite compromised and even though he resisted he spent a chunk of time in the icu. The diagnosis, anaphylaxis related to some NSAIDS he’d been taking for quite some time.
And time marched forward. Dad’s arthritis got worse. The swelling got worse. He could barely move his legs and mom diligently wrapped them in plastic trash bags to catch the fluid that was forever draining out. The lumps on his fingers grew bigger and he had taken up an almost daily ritual of chopping these lumps off with a sharp, dirty pocket knife.
Fourth of July was always special to us. Dad helped with the fireworks. He employed his stringent fire safety rules. The wet wood board under the fountains. The five gallon bucket of water for the used up fireworks to be discarded into. The hose hooked up and at full attention, ready to strike at any given moment. But this Fourth of July, dad sat in a chair, somewhat distracted and did not participate in any of the festivities.
The belly problems lingered as well, and dad was finally able to get in to see a gi doc and have a colonoscopy. He was 58 and this was his first one. When they finally did it, cancer was found and had spread into many of his surrounding organs. The exam was aborted.
I’m not sure how it feels from going from healthy, or relatively so, to terminal in a matter of weeks, but I guess you only ever know if it happens to you. The cancer trajectory is rather predictive. There is a relatively long period of high functioning stability followed by an often rapid downward spiral where functioning and quality of life quickly decrease.
I always thought cancer might be the best way to die. You have a small amount of time to get your affairs in order that you do not have in sudden death. And there is not that slow, dwindling decline that is often seen with dementia. And there are not periods of nearly returning to baseline between intermittent episodes that is so often the case with cardiac and respiratory issues. But working with oncology patients for 12 years hasn’t been enough to show me cancer is no walk in the park. Dad illness had to hit me smack in the face.
There is nothing beautiful about dying from cancer. We are all dying from something but cancer just isn’t the way to go. I imagine how bad it must have hurt for him to be willing to take a knife and carve his flesh. I imagine how strong the internal angst must have been when he realized that if he had done the colonoscopy, taken care of his symptoms years earlier that the discussion with the doctors may have been focused on cure rather than palliation. Maybe I can’t imagine loving my family so much that I would be willing to suffer immense pain in silence and without support just to spare others some of that pain. I don’t know if you were hard headed or kind hearted. I just know that I love you. With pain or without.

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uniform

Uniform
I wear the uniform of grief. The blank stare. The vacant eyes. The mind at flight. The uniform of a weary solider. I have fought the battle alongside my comrades. Our leader is down. But we must march on. We march on without a guide. Wandering quietly in and out of a life induced fog. Waiting for the next command. But nothing comes. We are left to fight alone. Determine the course of action for ourselves. The dust settles. The survivors do not.

I wear the uniform of mother. My hands are gentle. And firm from the callouses of small permanent grips. I am fierce. I am a fighter. I am soft. I am love. I am loved. I wear a cape of joy and a crown of suspicion.

I wear the uniform of a survivor. I struggle. I win. I lose. I climb. I triumph. I persevere. I wear the uniform for those who have left their own behind. I pile weight on my back and I do not break. I walk and I drag and I pull myself up. I wear the uniform of the battered and healed.

I wear the uniform of caregiver. I am a daughter. A nurse. A lover. Gems of compassion hug my swollen, worn fingers. I am loving. I am empathy. I am trust. I am your warm blanket and milk and chocolate chip cookies on the first day of school.

I wear the uniform of the insomniac. The flight of ideas. The active mind clashing with the exhausted body. The angst. The lust for sleep that never quite reaches its destination.

I wear the uniform as a disguise. There is nothing underneath. The uniform is safe and comforting. The uniform hides the emptiness. The uniform hides the truth. And the grief bubbles through the cracks in the surface and the uniform starts to break. And the self is cracked and battered and broken. But I am alive and I am strong and I do not need a disguise to survive.

 

We are all mad here

th4TQ3S50EAt the suggestion of several well-meaning people, I decided to give the counseling thing another try. Apparently between dad dying, regular life stress, and the anxiety of dealing with an unwanted sexual invasion, one should have an urge to spew their anxieties and feelings onto a professional who will regurgitate these said feelings, spit them back out at the “patient” and some sort of wild clarity will be gained. At least that’s what I was hoping or have heard.

I’m not sure why anyone would ever want that job. The job of listening to people whine and complain all day. Delving into things that happened in the past and that may or may not have any relevance in the present or future. I can’t imagine taking in all that stress and compiling with my own. I don’t know, in a lesser way nurses do the same thing. And the old, wounded stressed out nurses suffer just as much as the patients. They call it vicarious trauma or compassion fatigue, but I digress.

I have a long, but remote psychiatric history. Diagnoses loom in my medical record from teenage and young adulthood that seem to follow me wherever I go. I have been stamped, branded–a scarlet letter to mark my shame. So when I begin to spout my long history of psychotic mental illness at this baffled woman, somehow she hones in on the psychosis, the disordered me in the distant past and seems to forget the me in the present. The “me” that is not delusional or psychotic. The “me” who is just anxious and a little bit stressed just like a normal person would be if they were to have gone through the last year or two like I had.

But here I sit, like a piñata of delicious, DSM V candies waiting to be cracked open and gluttonously devoured. She seems excited, ferocious even to dismantle my every day emotions and turn them into something pathologic, something disordered. She seems to want to take my feelings and assign them all as symptoms rather than as a normal human response. Of course I feel anxious in her chair, because I can see what she is doing. If anyone else were to walk through that door and sit in this seat, they would have the freedom to be anxious, to be afraid, to be down, to be sleepless and that would be okay. But not someone like me.

Maybe that’s why I hardly ever tell my story anymore. Not because I ashamed of it, more because I don’t want to be viewed through a lens of “other,” something outside the ordinary. And here she goes. She first compliments me. She tells me I am amazing. So awe inspiring. Like maybe I should be in a museum. Look but don’t touch. Somehow, against all odds I have left schizophrenia behind and am functioning like an adult being. Wow, do I get a piece of that candy now? She just can’t believe how inspiring I am. But what she means is I am lesser. I am other. She will now view me as someone once disabled, who may now appear normal but could morph back into a psychotic mess when the sun goes down like a werewolf or shapeshifter.

How could I possibly be handing this so well? She seems to question herself. Certainly I must be on the brink of breaking. I want to tell her I am strong. I am so strong, that I am powerful. That it wasn’t magic that overcame this disease, it was pure grit, and will power and perseverance and a lot of support from people I love. I hold my tongue. For if I proclaim I am powerful, it may be viewed as a delusion of grandeur. And I spy over her notes as she writes, “Pressured speech, inappropriate affect” and I politely explain when I am anxious I talk faster and I giggle a lot. I giggle because I am light hearted, because I like to smile. Giggling is not pathologic. But her black pen scrawled across the yellow lined legal pad tells another story.

Halfway through this supposed counseling session, I knew I had lost. No longer was her focus on helping deal with the stressors I had come in to talk about, it was about a detective doing her work. Honing in on what she believes are symptoms of a larger problem, but are in fact just a part of who I am. I tell her I am happy. I tell her I enjoy exercising and running because it helps my mood. Those sound like perfectly sane, healthy ways to deal with stress to me. But her response, Are you too happy? Are you exercising too much? Five days a week is too much she says. Despite the fact that the American Heart Association and numerous other well-recognized organizations recommend getting thirty minutes of exercise a day, five days a week. Apparently, that applies to everyone except for me. Five days is too much for my feeble mind to handle. I might explode just like old Violet after eating too many blueberries in Charlie and the Chocolate factory.

She scribbles down in her notebook, pleasurable activities to excess. She has turned my morning workout into another symptom. I should ask everyone else in my boot camp class if they are similarly afflicted by this pathologic desire to exercise. It’s not even that pleasurable for me. I like it. I don’t look forward to it. I would much rather be eating a bowl of chocolate ice cream. God forbid I did that. I am sure pleasurable eating is not on the list of acceptable sane activity choices.

My one hour session was over. I am quite sure the counselor got more out of the session than I did. When she proclaimed her findings, an old diagnosis rediscovered, she seemed excited. Like she had conquered the mystery that is me. In 55 minutes. Perhaps, she herself is suffering from the delusions of grandeur. As she brought up points to support her hypothesis I countered with rationale arguments. She told me that my excuses, my denying symptoms were part of my illness. That arguing with her only strengthened her position. Never mind the fact that this “disorder” she has given me does nothing to impact my daily activities. I am working. I am a mom. I am not distressed. I am not detached. I am just a normal person trying to work out some things after having something traumatic happen.

Only not today. Today I am back in my cage. She shoved me neatly back into my box. Today, I am not strong or powerful or fearless. Today I am put in my place. Today I am weak. I am submissive. I am other. I left in worse shape than I arrived. Feeling more like Alice than myself…

“But I don’t want to go among mad people,” Alice remarked.

“Oh, you can’t help that,” said the Cat: “we’re all mad here. I’m mad. You’re mad”

Indeed, we are all mad here.

 

If you give a mouse a bucket list

 

I don’t think dad ever got to finish his bucket list, if he even had a bucket list. I don’t know… He was sort of a private person. He didn’t share much with me.   He shielded me from anything painful because he was the dad and I was the daughter. That’s how life is supposed to work. One person shielding the ones they love from the pain they are experiencing so they don’t feel pain themselves.

I was thinking if dad had a bucket list a jimmy buffet concert would be on it. I got us tickets to the Beach Boys six months before he died, but he was too sick to go.   I got him tickets to lynyrd skynyrd four months before he died, but he was too sick to go. So I did those without him. And jimmy Buffett just seemed like something he might really want to enjoy so I did that without him too. It was fun in a I drank too much tequila and might just want to go home and sleep sort of way. It was quieter than I expected. The parrot heads don’t make too much noise.

I’m not sure what else might be on his bucket list. I wish I had a chance to go to a show with him. Music is one of the main things we had a shared love for. He sent me an email on Father’s day last year. He said he wished he was at Scotty’s on the Strand in Hermosa Beach. I’m hoping that next year we can get to Hermosa Beach. It would just be nice to go places that he had been before.

In between the weirdness that being a fatherless daughter is, I also have to be a mom. One of mom’s primary duties is to be a nighttime bedtime story reader. Have you ever read the book, if you give a mouse a cookie? We seem to read it constantly. If you give a mouse a cookie he always wants more, he wants a glass of milk and crayons, and coloring supplies, and anything else under the sun. I don’t really care for that book.

Every time we read if I just think, if you give a mom a glass of wine. If you give a mom a glass of wine, she might ask for some cake. If you give a mom a slice of cake, she might ask for some coffee. If you give a mom a cup of coffee she might ask for a donut. If you give a mom a donut she might ask you for something else and the list goes on and on and on and on. If you give a mouse a cookie, a mom might want a bagel.

My son asks me if I’m still sad my dad died. Yes I am still sad. He doesn’t understand. He is three. He talks about how dad is coming back to life and how things will be when he does. He doesn’t understand time or permanence, but it still makes me sad sometimes when he talks about it.

So, I’m working on an imaginary bucket list. I’m working though the stuff that may or may not have been important for dad to get done. The important thing is that I’m working and keeping busy. What else can I do? If only I knew.

One piece at a time and it didn’t cost me a dime…

We are almost done with five months. Five  months without dad. It seems like it has been forever and it seems like it has only been a minute or two. Dad’s headstone came in today. I do not know how I feel about that. I was sort of sad that it was disrespectful that it had not come in yet. His basically unmarked grave sitting lonely along the side of a dilapidated fence with a beautiful view of popeyes. Now that it is here, it seems so much more real. It is only now that I am beginning to feel it all. Grief takes such a long time. And it is just compounded. Every time we lose someone, it just adds to this cumulative mass of grief bubbling below the service. But, I’m no expert.

So much has happened in the last few months. My daughter had a birthday, I had a birthday, mom had a birthday, and mother’s day came and went. All these holidays and events just going along without dad, but somehow each one is becoming a little bit more okay.

I have changed a lot. I do not even know why. I have been learning to stand up for myself and setting more limits with life and work. A few weeks ago, I was sexually assaulted. It was bizarre to me that this is the second time in my life this has happened. How can anyone have the bad luck or misfortune to have such a horrible thing happen not once but twice? I am not sure. I did not even really know what to do. I went to the police. I have no clue what is going to happen, but I keep thinking to myself over and over that I am really glad my dad is dead at least because of this. Because he surely would have killed him, gotten angry, brought a gun, and shot that guy right down, cancer or no cancer, healthy or not. And if dad were not in the grave, he would most certainly be in jail.

It might be strange, but it does not even make me angry. People make mistakes. And I do not have room to be angry. I only have energy to keep moving forward. Beyond that, I started exercising more. I always hated exercise. I just like to eat and be lazy too much. Food makes me happy. And it is hard for a fat girl to get moving.

But I started working out in a crazy hard boot camp four times a week and it is actually super rewarding. The sweat and hard work makes me happy. I am glad to have something to wake up for. I am glad to feel something besides nothing. Even if it hurts.

I have been gardening. I suppose because my dad used to like to garden. I have some cucumbers and squash and peppers and tomatoes. I think I am doing it right. I wish that I head learned more from dad. So many times lately I am thinking that I wish I had asked dad more about this or that. All I know about the garden is that the last frost is April 15 and the last is October 15. And that you should plant marigolds to keep the pesky tomato bugs away. The garden is sorta schizophrenic looking. I put so much stuff in it. And I planted things way too close together, but it is nice to have a new hobby and it is nice to remember my dad by doing some of the things he liked to do.

I am looking for new hobbies. I have done the gardening. I think I might look into beekeeping. I really want to learn how to fly helicopters and one day I hope I can open my own ice cream shop. How can you be sad when you are making ice cream all day? I love ice cream. Dad was not really a fan of sweets, but he liked ice cream, too. For now, I am still a nurse. Dad was always proud that I was a nurse and I am a pretty darn good one. I do not know what the future holds. For now, it is one day at a time and that is good enough for me.

Easter

It is Easter Sunday. Jesus has risen from the dead and humanity is filled with hope and excitement and awe and disbelief. A man once buried has awoken from death and is alive again. Most Easters are filled with joy and peace for me. An unfulfilled promise coming to fruition. A reward for the sacrifices made in the weeks of anticipation leading to this morning. Everything is a little bit clearer. The sun is brighter and hope is renewed in a way it hasn’t been in a long time.

But, do you know who is not rising from the grave? My dad. His body still sits. Encased in a wooden box. Fake puttied skin plastered to his decaying flesh. Inside a concrete vault and then buried with too many pounds of dirt to think about. And little sprouts of grass on top of his grave that seem almost disrespectful. The little flecks of green do nothing to pay homage to the patriarch sleeping below the feet of the tiny emerald blades.

So today, the world isn’t quite as shiny and new and hopeful. Today is another day without my dad. No one told me it was going to be like this and I guess it is kind of odd that I didn’t anticipate it. But today was hard. The first holiday without my dad. Well technically the second. But the first was New Year’s which occurred two short days after he died. That holiday we were pretty much in shock and had so many tasks to keep us busy I honestly don’t even remember if I knew it was New Years. But today was different. Today I felt like someone punched me in the guts. Today I felt like I did not even have the power to breathe. Today I felt anxious and unsure and the concrete brick in my stomach did nothing to chase away the negative emotions. Food tasted blander. The colors had momentarily faded from the world.

Nobody told me it was going to be like this. That I would spend part of one of my favorite holidays trying to chase away bad feelings and wishing that this giant hole in my chest would stop growing any bigger. The the first real holiday without dad would feel less like a holiday and more like a recreation of his funeal. No, there will be no moving of rocks today. No stone to roll away from the grave. Just a daughter feeling a little bit lost and confused. And eyes hurting from running out of tears.

It’s not like Easter was even a big thing for him. He only became catholic at the very end of his life and Easter didn’t have the special meaning for him as it did for me. But I am sure he would have enjoyed watching the kids find Easter eggs and just being kids. But he wasn’t there and that didn’t happen.

I didn’t know it was going to hurt like this. I didn’t think I was capable of hurting like this. I just wish you would come home. That we could have one more Easter dinner before the cancer took away your ability to eat because of the painful mouth sores, or socialize because of the embarrassing bag attached at your waist or as the disease progressed and tumors filled more of your belly than did organs your and stole away your appetite. I wish you were here eating ham. Not being fed through a tube shoved into you through a large IV line situated just near your heart.

But that wasn’t helpful. The IV nutrition was the only thinking keeping you alive. I didn’t think you would have wanted that. But I am not the boss and I can’t make those decisions.

Anyway, I wish I had known it would feel like this, the first holiday without you. I wish I had known my heart would be ripped out of my body and stomped on. I just wish I had known.

 

Month Four

We are going into month four now. Four months living in a world without you in it. I wouldn’t really say I was a daddy’s girl. We didn’t even often see eye to eye. I disagreed with many of your choices and you disagreed with a lot of mine. But we always respected each other. And loved each other, even if we didn’t ever really say it. We knew.

I never wanted life to go on. I felt like the world would never be the same without you in it. I guess it’s not the same and I guess life really does go on. Here we are. I’m living proof.

I went to your grave today. It looks lonely. Your headstone still hasn’t arrived. The flimsy, temporary paper place card doesn’t look like something you would have liked. It looks cheap and disposable. You were never one for cheap or disposable. It has your name spelled out on it. Black and white and Courier New..and the day you were born and the day you died. Your life in 25 characters. There’s a little bit of grass on the ground where you are buried. Life that wasn’t there the day they put you in the ground. I left some fake flowers in a cheap plastic vase while we wait for the permanent one to come in. I don’t even know if you liked flowers. I know you liked plants and veggies and hummingbirds, but I don’t know if you liked flowers. I doubt you would have liked fake and plastic. But I guess you can’t really complain. I put a hummingbird feeder out today, just like you would have done. And I cooked up some squash, with extra bacon.

I told you I’d take care of mom. I don’t think I am doing a very good job. Mom is still taking care of me. It is hard to flip those roles. I did have a birthday party for her. I think she liked it. I can imagine it is hard for her. Her first birthday without you. So many firsts without you. But I guess that’s how it goes, and soon there will be seconds without you.

It’s spring time. Signs of new life everywhere. You would be about to plant your tomatoes. April 15, that’s the date of the last frost here. Hopefully I can get some going and maybe we will even have some by the 4th of July. Tomatoes by the 4th, that’s always the goal. Mom doesn’t want to plant anything at your house. She is sad that people are mowing the lawns and planting their gardens. It reminds her too much of you.

We talk about you a lot. How it just wasn’t fair that you didn’t even know what was going to happen to you. That everyone knew that you were going to die except for you. Our little dirty secret I guess. I don’t know. I am pretty sure that somehow you knew. At least in the back of your mind you knew. I hope you did anyway. I hope you knew.

False Hope

False hope. Hope – faith, trust, believing, expectation. False hope, there was so much of it along the way. In the beginning, at the very start of this ugly diagnosis…my dad had a colonoscopy. He was 58. Sure, he was supposed to start his preventative screening earlier than this. But no doctor had pushed for it, and he wasn’t one to volunteer for medical tests. He went in thinking it was a routine test. And when he awoke he quickly discovered the test could not be completed. There was a tumor so large it blocked the way and the study could not be done. The doctor said it didn’t look good. A doctor he would never see again. The nurse assured him colon cancer was easily treated and he had nothing to worry about. Perhaps if they had discovered it early, perhaps stage I or II cancer this might be the case. But this large tumor had already spewed its malignant reaches into dad’s lymphatic system, washing his lungs and liver with poisonous cells. The false hope started with a nurse speaking out of turn. Probably in attempt to reassure, but dad only clung to the fact that he would be fine.

And it continued, the false hope. With the oncology team. People are living so long now with stage IV colon cancer. Five, even ten years. There are so many things to try. Never mind the five year survival rate of stage IV colon cancer still hovers around ten percent. Even though 90 percent of people in his shoes would be dead before the end of five years, maybe my dad will have ten. Maybe he will be the one. Nevermind he had a particularly aggressive form of cancer where the tumor had a specific gene that made it notoriously more difficult to treat and more resistant to the standard chemotherapy. There is still so much that might work. One day, you might beat this. Just a little more poison in your veins. Just a little more nausea, vomiting, incontinence, diarrhea, neuropathic pain, anorexia, exhaustion, just power through because you will be the one where this noxious cocktail might actually take hold of these cancerous cells and buy you time. Nevermind that time will be riddled with confusion and fatigue and your life won’t be a thing like it is right now. You should try this out, it might work.

And on to Johns Hopkins. When my mom first called the colorectal surgery office, the physician said there was nothing he could do. Imagine that. A surgeon who won’t cut. You’d think that would be enough to convey hopelessness. But they fought. They got into see the oncology team for a second opinion who somehow convinced the surgery team to take my dad’s case. Even though stage III colon cancer was usually the worst case they would operate on. And there it was. A beautiful glimmer of false hope. They lopped out a huge hunk of rectal tumor, of rectum, of colon. They hacked off 70 percent of his liver. They took so, so many lymph nodes they created a leak in his lymphatic system where fluid drained and drained into a plastic grenade my mom had to diligently empty every half an hour. Almost two weeks in the hospital. They hacked him up. And then they told him he was cancer free. Cancer free. Imagine that. A body riddled with cancer and now he was free. He endured radiation, extra, extra strength clinical trial level radiation, strong chemo, hours and hours of surgery. Pain and pain and pain. Rides in the car to Baltimore and back over and over and over again. MRIs and Ct scans and Pet scans, but all because there was hope. Hope that somehow he would come out ok. Hope that all this treatment would buy him some quality time. Time to tie up loose ends and to live and to love and to make things right.

But only a few months later, the scars still running deep. The bag on the side of his belly a constant source of irritation and embarrassment, the scans show the cancer is back. It was never gone. And his liver is worse, and now it’s filling his lungs. And the scar tissue on his liver is now stuck to his diaphragm and between the tumors and the scar tissue it was so hard to breathe. So back to Hopkins, to sew up the bag and hack up part of his lung to chase the tumors that are still spreading like wild fire and to zap his heart to kill a few crazy cells that are making the beats irregular and uncomfortable. But there is still so much to be done. Continue on with your chemo. You look great. All is well. I asked to the doctors to help dad with pain meds and with some Ativan to help him relax. No need, he doesn’t need Ativan. No morphine needed. Try some Tylenol and a muscle relaxer for the tumors that suffocated your organs. Surely, you are not dying. There is so much left to do.

Back to the chemo. Weight was dropping off. Not ten or twenty but over 100 pounds. And the confusion and the incontinence. Life was without dignity, and full of embarrassment and loss of pride and loss of self. Something formerly unacceptable is now just a way of life. And dad was so confused. He stopped eating. Clearly he was dying. He was slipping away. We asked the doctors. Of course he wasn’t dying. There was so much more we could try. They prescribed TPN. Artificial nutrition pumped through the port in his chest right into his veins. He will not eat. His body is shutting down. But we will make it take nourishment. There is so much left to try. Never mind the burden on my mom. The house that has turned into a mobile clinic. She has no emotional support. Anxiety is through the roof. There is no preparation for what is to happen next. No one know what happens next. She gingerly and eagerly and lovingly poured the viscous, sticky white honey thought his veins. To keep him alive. There is hope.

Dad is dying. He doesn’t know the day. He doesn’t know it is Christmas. We ask the doctors again. No, he’s not dying. There is so much more we can try. They stop the TPN. His body is railing back. His belly and lungs filling with fluid. He can’t continue the artificial nutrition. He is confused. He falls. We take him to the hospital. The oncologists come. They say maybe he has malignant meningitis. Maybe cancer in his spinal fluid explains the confusion. But, there is more left to try. We can try a spinal tap, do more scans and then radiation. Radiation on a body that is almost a corpse. How do you transport someone to radiation five times per week who is too confused to sit still? Dad is dying. But he still doesn’t know. There is so much more to try. The doctors from Johns Hopkins are long gone. They have retreated, given up. But neglected to speak up. Just faded into the background. There was nothing left, but they didn’t have the courage or decency to say. The appointments were canceled without even a goodbye.

Dad was dying before my eyes. Can we please just go home? With hospice and morphine and a hospital bed and help and support from nurses and a social worker and a chaplain. No, just home health would be fine. Dad is not dying. There is so much left to try.

They finally told dad he was dying. Two days before he died. They told him and he gave up. Went to sleep and never woke up. Maybe that’s why they waited. That false hope was keeping him going. That false hope helped allay the fear and anxiety that waited ahead. That false hope kept him from making amends and tying up loose ends. Was the false hope good? We all knew he was dying. But he didn’t know. He just knew to fight. To fight. To fight for all the things left to try and all the things that were to come. The false hope helped to bury the fear. I don’t know. Maybe the false hope helped soothe the deep wounds. But it also left so much unsaid and undone. It is hard. It is really hard to tell someone there is nothing left to try. There is no hope. To take away the belief the hard disease is beatable, curable. The mistake of the nurse trying to soothe, the misguided advice of the doctors trying to be humane. Trying to shine a light on a situation clouded in midnight. I don’t know maybe false hope is the answer. Maybe it is. Maybe it is.

Mad world

Mad world

And I find it kind of funny
I find it kind of sad
The dreams in which I’m dying
Are the best I’ve ever had
I find it hard to tell you
Cause I find it hard to take
When people run in circles
It’s a very, very
Mad World

 

I woke up yesterday morning after a night of not sleeping so well.  I had to take my love to surgery. I guess I was more nervous than he was because he was snoring away next to me for most of the night. I checked my phone after the alarm went off.  My littles had been sleeping away at grandmas.  Mom had texted me in the middle of the night saying my daughter was sick.  She had a fever and a sore throat and a cough.  She needed to know what to do.  I begrudgingly texted her back with motherly instructions, got my lazy and sleepy self dressed, and proceeded downstairs and out the door into my warm garage and waiting SUV to head out to the hospital.

I sat next to him as we waited.  I had the lucky advantage of being a nurse, of knowing all the steps that were to come next.  Some of the staff recognized me and maybe treated us a little bit better because I was one of their own.  But at the very least, I was able to explain to him the things he didn’t quite understand because staff were a bit too rushed to answer questions or thoroughly explain things with the explanations that needed to be undertaken with extra care due to the stress and confusion and extra drugs swirling around his head.

He was finally whisked away to the cold unknown of the waiting operating room and I was escorted to the surgical waiting room where a grumpy volunteer promised to keep me updated. The signs on the door proclaimed loved ones would be provided with updates every thirty minutes, a fairly lofty goal when considering all the folks waiting around for their loved ones inside packed surgical suites.  My anxiety was rising. Thirty minutes passed, then an hour, then two, and almost three without an update.  The surgeon said he thought he would be done in about 40 minutes. Who knew what was taking so long.  But I figured if something had really gone wrong surely I would be alerted and no way he could be lost and forgotten back there.  The surgeon came and pleasantly greeted me.  The familiar jargon of one healthcare professional to another. The brief update and discharge instructions as other waiters curiously looked on.  Observed our interactions.  Wondering why he was speaking on and on about specific tendons and bones and trauma incurred during surgery and what the possible aftereffects might bring.  The old bat of a volunteer finally called me back to the recovery area.  The first she had spoken to me since we checked in. I am mildly annoyed that her so called 30 minutes lasted longer than three hours.  She asks me if I am ready to go see Roger.  I don’t know anyone named Roger, but sure I’d go back.  And my wet palms were suddenly dry and still.

I sat with him until he had recovered and helped him back into the car. We got home and settled inside and my mom met me at urgent care with my daughter.  I was mildly annoyed and a little bit stressed.  Slightly anxious over money and finance, the copayment for surgery and meds and now more doctors and meds and on and on and on. I was mildly annoyed that I had to take time away from my recovering better half to run to the doctor for a slight childhood illness that likely did not need a trip to a physician but just some TLC and chicken noodle soup.

And then while I am waiting a mom and a child about the same age as my own wandered into the urgent care. The family was Hispanic, didn’t seem to speak perfect English and inquired at the desk about the cost of a visit for someone who was uninsured. The receptionist replied that the cost for an office visit was $185.  The mother smiled and said thank you and walked out the door.

I should have stepped up.  Here, have my money.  Surely there was no reason in the world that a child with the same symptoms, the same age, many of the same circumstances as my own child should be denied the same treatment my own kid was getting.  He was just a kid, same as mine, it didn’t make any sense. But I didn’t step up.  Just sat there in my own little world.  Worried about my own kid and trivial circumstances.

Yes, my other half was just home from surgery.  Sure he couldn’t drive for a while on account of a broken foot.  My kid was sick with the flu and would need an adult to stay home with her for a week while she recovered.  But I had a job with the flexibility to take off when my family needed me.  I had a mom and a mother in law close by that could help with chores and driving and errands and child care and just emotional support.  I had good health insurance and money in the bank to pay for appointments and medications and unexpected aftercare. I wasn’t worried about how I could afford to get my sick kid to the doctor or having to choose to pay for water or electricity or medicine a loved one needed, I wasn’t afraid I would be fired or retaliated against for taking some time off to care for family members, and I even had plenty of sick time to use so that I would not only keep my job but get paid for the time I needed to be away from work. 

It just made me so incredibly happy and sad.  Happy and fortunate to have all that I do…  And so incredibly sad that the little boy so much like my own walked away that afternoon without access to healthcare or medicine that my own daughter had.  Sad that I felt annoyed at the inconvenience of it all instead of grateful for all that I had.  Sad that I know there is much more I could do to help, but I don’t do it.  Ultimately I am selfish.  And even if I did it would never be enough. 

Yes, it’s a very mad world. A mad world indeed.

 

And I’m looking for you wherever I am

Hoping to find you between the sheets

In the bed

Under it

Hiding in the shadows of the dark closet

And I’m looking for you in the food I shove in my mouth

That slides down my throat.

In the drink that swirls in the bottom of my glass

And I’m looking for you in love and lust

In arms and legs and tangled up parts.

In work, in fun, in play.

In childhood dreams

In the brightness of day and darkness of night

And I’m looking for you

But I cannot find whatever I am seeking

Comfort, that fleeting sense of security.

Trying so desperately to please– to find relief

In others’ opinions

In a fantasy that is at odds with all that is real

And I’m looking for you

Sweet comfort

Sweet relief

A cowardice move in a plot not complete

And I’m looking for you like a mother’s arms

And I’m looking for you

And I’m looking for you