I’ve started to write and illustrate a small graphic novel about Danny’s pancreatic journey. I don’t know if I can do this. I barely can look at pictures of him without crying but I feel like there are many people going through this that may benefit from his story. It will be my second graphic novel. The last one took a year to finish. So I have no idea when this will be done but it’s a start.
Category Archives: Fun
Dreamland
I had such a vivid dream of Danny last night. I dreamt he appeared , just a solid and real as you and me. I was thrilled, even though I knew he was a ghost. It was so nice to be with my love again. There was just one little glitch, no one else saw him but me. I didn’t care, I was just so happy he was back. Everyone stared at me as I went about my life talking and interacting with my invisible friend. I never was one to care at all what other people think, so I didn’t let that interfere with our new ghost and wife life. It all came back to realitity when I woke up alone .
Perhaps the dream was wishful thinking, or was it Danny’s way of comforting me? Either way it was a wonderful dream, that gave me one night with my beloved Danny.
Understanding sadness
“The best thing for being sad,” replied Merlin, beginning to puff and blow, “is to learn something. That’s the only thing that never fails. You may grow old and trembling in your anatomies, you may lie awake at night listening to the disorder of your veins, you may miss your only love, you may see the world about you devastated by evil lunatics, or know your honour trampled in the sewers of baser minds. There is only one thing for it then — to learn. Learn why the world wags and what wags it. That is the only thing which the mind can never exhaust, never alienate, never be tortured by, never fear or distrust, and never dream of regretting. Learning is the only thing for you. Look what a lot of things there are to learn.”
–T.H. White, (from: The Once and Future King)
I have four undergraduate degrees. Art, science, psychology and creative writing. Two are science based and two are creative based. Even though I’ve never really ” used” these degrees in tradional 9-5 cubicle kind of way, I’ve drawn on the knowledge I’ve accumulated over the 30+ years of sitting in a school chair. So now that I am experiencing the intense loss of my mate, I find myself watching and wondering about the grief process. The scientist/ psychologist part of me finds it interesting how my mind and body reacts the worst stress it ever has experienced. If it is even the worst.
As a seven year old little girl, I was abandoned, along with my four brothers, in a catholic orphanage. I felt fear and self- hatred. I was convinced my mother didn’t want me because I wasn’t good enough. My stress reactions included peeing in bed, thumb sucking and self mutilation by ripping out handfuls of hair. At one point I stood on a high window ledge preparing to jump. I didn’t.
I not only didn’t jump, I adapted to orphanage life. I thrived. I was a small defenseless child with very few coping mechanisms. It took everything I had to survive and stay happy at that hard point in my life. Here I am again at another devastating change. My relationship with Danny was the real fairy tale. We loved each other so much that people wished they could have what we had. Disney would never had written a script to end a 43 year old romance this way. Yet this very thing is going to happen to most of you. You will lose someone dear to you. How will you survive that?
I’ve observed the physical and mental symptoms that I have experienced during my ordeal with death of a loved one. Of course you would have different symptoms but I find it interesting how my body and mind responds to stress ( as I sit here contemplating my belly button).
For me, I’ve noticed the part that went first was my speech center. I replaced one word with another, sometimes not even knowing it. I couldn’t speak clearly. It’s like my mouth became unable to form the words. I’d be unable to find the words I wanted to say. I forget even the names of people I’ve known for a long time.
The other physical symptom that happened when I first find out my husband was dying, was hair loss. I started shedding like a cat. My hair would fall in massive amounts in the shower. You would’ve thought I was the one getting chemo. Thank God, that stopped and most of it grew back by now. I’m happy that I’m not a bald widow!
Now my worst problem is the inertia. I find myself just staring into space a lot. Feeling numb and empty. I just don’t feel like doing anything. I am normally a person with an excessive amount of energy. Always doing or making something. It seems that the stress has zapped my energy. I sleep longer. I normally only sleep six hours a night and that worked perfect for me. Now I sleep seven, sometimes eight hours.
My tolerance for other people is way down. I get annoyed easier. My attention span is shorter. I cry over everything. Just saying “Danny” makes me cry. Just writing “Danny ” makes me cry. I know time will help. But I’m already tired of this mourning crap. I want to ” fix” this grief. I want it to go away so I can be happy again and carry on with my life.
So what do I do? I do as I always do I turn to the knowledge of the learned. I’m educating myself on Grief. I’m learning how different cultures handle grief. I’m learning the psychology of grief. I’m learning the science of grief and I’m learning the art of grief. I’m getting out my big guns! So take that you fucking grief!
A new beginning.
This is me at Knoebels amusement park. My kids and friends have been keeping me busy.
This is me all alone for the first time in 43 years. Danny and I used to go here all the time. We even used to ride the Harley up here just to eat chicken and waffles and then turn around and go home.
I thought I might totally fall apart after Danny died. So far so good. Maybe it’ll be a delayed. I am beginning to think maybe I’m going to be alright. Each day gets a tiny bit better. Of course, I cry everyday. But I’ve been doing that for a year. Old hat.
I’m a tough old bird and I’m just naturally happy. This is the toughest blow I’ve had to take. But I’ll be okay.
The last words Danny said to me was
“Are you going to alright?”
” I’m going to be alright.”
He smiled and kissed me and never said another word after that.
I just want to thank everyone for their kindness and generousity. You have all been so wonderful and supportive.
Hanging on to the love
Danny is still with us. The hospice nurse keeps coming and saying he will pass soon. So she doesn’t give us extra meds. She said she hates to waste meds. Well, now his morphine is low and we have to worry they won’t get a new bottle to us in time. We shouldn’t have too worry about this.
I have a call in to get more, so we should have enough. He has enough for a couple hours yet.
His heart is beating. Really fast. 130 beats per minute. His oxygen is getting lower even though he is on oxygen. His fever is up to 130. His eyes are closed now, but his mouth gaps open. No food or drink for days.
All signs that he will pass soon.
All this and yet he still shows a little bit of reaction to things we say and do. An eyebrow shoots up, his brow furrows, his eyes blink, his toe twitches- reactions or just neurons sparking?
Just got the call- more morphine is ready to be picked up at the pharmacy for Danny. Our worries can rest. No one slept very well last night. Hourly meds administered by Lerin and Sonnet. At one point during the night Danny started gurgling, so Lerin called Sean over and then woke the rest of the house. Everyone camped out in the living room with Danny.
It’s not that he doesn’t want to leave, I think. We had a year to talk about this. Of course, he didn’t want to die but he came to terms with it. Not once was he afraid to die. It’s not fear that keeps him here. I think it’s because he has a strong , heathy body ( other than the cancer).
He always led a healthy lifestyle. No smoking,exercise, good food, lots of love. I just think his body is strong enough to keep up the fight for survival that is inherit in all of us.
Shutting down
Everything is shutting down.
Danny stopped talking, eating and drinking.
The end is near.
He’s got the fever
Not much to report today. Danny is still hanging in there and so are we. All the kids took leave of absence from work to help care for their beloved Daddy.
Most of the time he sleeps peacefully. Once in a while a toe wiggles, a half smile appears and a weak kiss forms on his lips if he is conscious enough to realize one of us is there kissing his feverish face.
The fevers rage on and on. 101, 102 plus. We hate torturing him with Tylenol suppositories and ice cold wash clothes on his groin, armpits, forehead and behind his neck. We cool him down to keep him comfortable.
He has had nothing to eat since Monday morning and that was only a tiny bit of ice cream and 2 raspberries from the garden.
We don’t allow anymore visitors other than family now so as we can keep everything calm and peaceful for him.
I hope this is all over for him soon.
Dylan ( Lerin’s boyfriend) said maybe he’s hanging on to keep soaking up all the love of his family. He doesn’t have to stay and suffer here for us to love him. We will love him through eternity.
A lull in the chaos
I gave him a warm bath and sonnet and Kevin put him in the wheelchair and took him outside. It was what he wanted all night- to escape this hell. He got to see his kitty- Benny and pet his standard poodle . The sun shone on his yellow face. He tried a few more times to escape from the wheelchair so we had to put the seatbelt on. He tried to distract us by calling over the dog and then very sly, he unbuckled himself and tried to stand up to run away.
Hospice is working on getting him Haladol to calm him down, since 4 adivans didn’t do anything to help him.
We wheeled him back in, fed him so ice cream ( his favorite peanutbutter chocolate and butter pecan) and now he seems to of settled down.
No sleep for I me yet, I have to wait for the call from the pharmacy and then send someone to pick it up.
Where is the nearest exit?
Danny tapped on my face around midnight. He was very agitated.
Where is the nearest exit?
We have to get out of here.
I want to go home.
Is the train coming at 3 this morning to take us home?
We are home. I reassure him.
He doesn’t believe me.
Why is this happening to us? He asks.
I have to safe you from this.
I can’t stand it anymore.
No more suffering, no more suffering.
Oh no, oh no, I have to pee!
You have a catheter.
I can just pee?
Yes, you can just pee.
And then it starts all over again.
I want to go home.
I have to pee.
He cries.
I cry.
Five and a half hours of this over and over. He still is awake. He is still trying to escape. He has tried to climb over the foot board, over the side railing, over me to the other bed. He is too weak to get very far. He is covered in sweat from the effort.
At first I held him down, then I realized he needed to try. He needed to do what he did all the rest of his life. He needed to work his damnest to achieve his goal. He has always been a man who knew what he wanted and worked hard to get it. Who am I to stop him now?
It’s all so very sad.
Pancreatic Cancer Pain
We are so blessed to have such a close knit family and friends. The food, laughter, offers of help, hugs and more food just keeps coming. And yet, underneath it all is the undeniable truth. My friend, my lover, my husband is dying. Even though he was more aware yesterday, he had more pain. The meds took care of it but just by the fact that he needed 3 extra doses of breakthrough oxycodone on top of the morphine means it’s increasing. During the night , he yelled out in pain a couple of times.
Overall it really was a better day for him. He pooped, he drank , he ate more, he was a little bit stronger.
He only slept, maybe 80% of the day. Went to bed around noon. Sat in his chair from 7am to noon and then asked his nurses aids ( Sean and Kevin) to put him in bed. Certainly better than yesterday.
I think the oxygen is what made the difference in his alertness. He still gets very confused. He thought the Catheter was a screwdriver and wanted me to get it out of the bed before it got lost in the blankets.
He asked me:
Where is my clock?
What clock?
The clock in the corner of your eye.
He often thinks he is back at work answering an emergency call. So you might want to think about how you spend your life time because in the end you relive it again. Will I think I’m making art when I’m dying?
He loves having his friends and family around him and sometimes the whole gang is piled in on the second hospital bed. This man is bathed in love. And you know why? Because he deserved it. He’s always put his family first, always been loving, compassionate, completely unpredictable and fun. I can tell you honestly I have never been bored with him.
He loves to tease. Not your normal teasing but his special brand of teasing which included staying completely strait faced while doing it and tricking the victim into thinking he was serious. Sometimes he would never tell you it was a tease, but sometimes the corner of his mouth would creep up a little bit revealing his prank. His smile blossoms across his face until he pushes it back down trying to keep up the joke leaving you bewildered and wondering what just happened!
So many people have been pulling me aside and asking me “The Big Question” . It’s not my question, I don’t want to know. I’m not the kind of person who ever looks ahead to even one minute. I really do live moment to moment. I learned at a really early age that it is a waste of time and emotions to ever think you can possibly rely on the future being predictable. So I take everything as it is served up to me. I never sit there thinking about how wonderful dessert might be nor to I sit there fretting about the giant pile of dirty dishes or fear that i don’t know where my next meal will come from. No, I just eat what is there right now and savor each bite of life. See, aren’t I just perfect?
Anyway, enough about my endearingly perfect mental health, now let’s talk about you. You want to know, how much time does Danny have left? Death is like birth, they ( the medical team) can give an estimated time but people die and babies get born when they are ready. We are getting both. Danny will die and our newest granddaughter will get born. We kind of know “Moonie” will get born around Sept 3 and the hospice nurse said, –
I’ve been doing hospice for 20 years and people always ask this question. I think Danny has a couple weeks ( does a couple mean 2?) . But I can also tell you that death is never completely predictable, it could be tomorrow or it could be months. It mostly depends on if he has any unfinished business and if he is ready. It also depends on the family letting him know it’s okay to go. Letting him know that you don’t want him to suffer anymore.
So there you go, now you know the answer to the burning, heart breaking question. How much time do we have left to enjoy the presence of this amazing, beautiful man? I’ve had 43 fantastic years . I met him when I was 14 and he was 15. The flood of Hurricane Agnes washed me up on his shores. We never wasted a minute of that time, we spent as much time together as we could. It was as if somehow we knew our time was limited. People would laugh at at me and accuse me of not being a proper feminist because I ‘d rather spend time with my husband then go play with the girls. We have a life that only Disney could’ve dreamt up. Except instead of just the prince doing all the rescuing, we rescued each other.
Pancreatic Cancer 