In his words


As I’ve written this blog, I always intended to make Dave’s pancreatic cancer battle as truthful and in the moment as possible. Every so often Dave would sit and write. I’ve never put his writing up on this site. As I’ve started the project I’m working on, I’ve come across some of his words. This particular story was written in Dec of 2013. No edits, as is, raw and real. 

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I’ve considered how I wanted to write this post and this is the fourth time I started writing (the last one was deleted because I took too long writing). I meet with my Doctor at the beginning of each new round, so at the beginning of round three we met. He asked the usual question about how I’m doing and explained how my progress was up to this point (progressing as expected ). I had decided in advance to talk about longer term questions this time and not just generalities. You see, I spent a lot of time digging through the internet for long term prognosis for pancreatic cancer and found the statistics were not good even in the best of circumstances (this is the problem with the internet, it’s too easy too self diagnose). Now I should preface this by saying I’ve been lucky. They found it early and got out all they can find (I thank God and Liza every day for my life). I just needed to know more. The doctor confirmed my research that the survival rate for pancreatic cancer is low. Few make it to my stage and fewer make it past year two or through year five. Very few go into complete remission. The doctor said that the cancer being in my lymph nodes and not just the pancreas is the reason I’m still in the low statistics. It’s in my blood stream and that’s hard to kill (which is where the chemo comes in). I have as good a chance as any to beat the odds but it’s still going to be a lot of milestones to get past five years. As I said, I’ve been lucky (I got Liza so I must be lucky) so I believe I’ll beat it. However, I talked with Liza and we agreed that we shouldn’t get a house before we get past the first two years. At that point we can re-evaluate. That means keeping our stuff in storage longer than we first intended but that can’t be helped. Instead, we bought Bella a new bedroom set and a new love seat for the living room to fill things out in the apartment. Bella is very happy with what she got. 

Rather than giving the blow by blow for the past three sessions (all of round three ) I’ll just summarize the time. The fatigue and joint pains are recurring themes for all of this time, particularly the weekends when I mostly sleep. The doctor said the effect is cumulative and will get worse with each round but will go away when the chemo is done. 

Thanksgiving was nice with the three of us. Liza made turkey with all the fixings. She made Martha Stewart mashed potatoes (really good but you’ll have to ask Liza why.). Also home made Cranberry Sauce (very tasty). 

It was my off week so I was doing somewhat better. Put up our new Christmas tree and lights on the balcony and shrubs. 

Why Am I Still Here


Do you know what it’s like to feel truly alone? I do. Today as I sat in the garage after my workout, I looked up at the ceiling. I wondered if the garage door supports could handle my weight. I thought about Bella and Rachel, how would they feel finding me there. I was working out a plan in my head. Just then it became clear….what the hell am I doing? 

I took a step out of my comfort zone, unfortunately I got hurt. I got hurt really bad. The one person I thought I could talk to misunderstood me. And now that’s all messed up. It got me to thinking about friendship. When David died, so did my friendships. People didn’t want to bother me in my grief stricken state and they just forgot about me. Most people don’t feel the same about friendship as me. I just wanted a friend to give me a hug, hold me while I cry and tell me that everything is going to be okay. In the meantime, I’ll hide in my room where Bella can’t see me. Wash my face and keep pretending that everything is ok. 

Pj’s and a Motorcycle Helmet

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Tomorrow will mark a year. It didn’t get any easier. The pain is still fresh. I’ve become quite adept at maneuvering in a somewhat normal fashion or maybe I just got better at faking it. I see his face in the strokes of a painting, in the cloud formations or in the reflection of a light fixture that caught my eye. I still have insomnia, some weeks worse than others. I’m trying to move forward, but I don’t think I’ve made any progress. Every day my inner voice reminds me to choose happy. Little glimpses of my old self are starting come out. Then late at night I start to miss him and I walk around in my Pj’s wearing the motorcycle helmet that Dave loved. Sometimes I put on his gloves and hold myself tight with the knowledge that his hands were once in there. I selfishly want him back. I miss his presence and I miss his love. Then I wonder if anyone will ever love me like that again? I’m not totally delusional. It wasn’t always rainbows and sunshine. Hell, I even miss the arguments. I even miss him flipping me off. Dave taught me how to love, flaws and all. He broke down the wall I had built around myself. I feel exposed. I have kept my inner circle small and tucked myself away from the world. Well from living, breathing human beings. I can’t seem to do the people thing right. Bella is still having a hard time. Therapy has been a shit show, only cementing her disdain for psychiatrist. Tomorrow we will go to Mount Bonnell to remember Dave. When the time is right, that will be his final resting place. For now, we will just keep going along. I want this summer to be filled with new experiences and happiness for Bella. I want to fill her head and heart full, to help get her to the next stage. I’ve given myself a deadline. If I don’t accomplish my goal, at least she will have those beautiful pictures in her memory to get her through.

 

 

Baby Steps

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Spring is here. Time for newness and rebirth. Bella’s birthday landed on the first day of spring. Her first without Dave. It was fun and sad. We’ve made it past all of our first special days. All the celebrations that we look forward to, somber because he’s not here. Next month will mark a year since Dave passed. It’s hard to believe that it’s been a year. Everyday something triggers a memory of our journey (nightmare), but it haunts me the most at night. My source of insomnia. I play those three years in my head. I watch it in my memory like its tv. We’re all a bunch of scared clueless people walking around like functioning zombies. I haven’t unsubscribe to the two pancreatic cancer message boards I belong to. I don’t always read them. I just get some strange kind of comfort from them popping up in my daily email. Today I actually read one of the questions. A gentleman being pushed thru the pancreatic cancer standard treatment machine. No one, no doctor committing to anything until they open him up. Looking up stuff online and not finding any answers to his questions. For all of the new research and immunotherapy stories, there are still patients as clueless as we were almost 4 years ago.
My best advice. Get your shit together. Take time to enjoy your life. Because in the end, all we have is our memories.

In the spirit of spring and making memories, I’ve decided that it’s time for Bella and I to start moving forward. I also want us to have a really good summer. I want to give her some really good memories. We could use some.

Dear Davie

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We reach so remember me when I’m gone

How could we not talk about family when family’s all that we got? Everything I went through you were standing there by my side And now you gonna be with me for the last ride

So let the light guide your way hold every memory As you go and every road you take will always lead you home

It’s been a long day without you my friend And I’ll tell you all about it when I see you again We’ve come a long way from where we began Oh I’ll tell you all about it when I see you again When I see you again

 

 

Dear Davie,

Things sure are different since you’ve been gone. My heart, brain and every other part of me aches for you. No one can feel it but me. I miss you so much. I am so sorry for all the pain that you suffered so bravely through. You took that shit like a boss. You never stopped smiling and being positive while this fucked up cancer ate you alive. I am so sorry that I couldn’t get them to take the pain away. I hope that you heard me speaking to you. I wanted you to know how much I love you. You are everything to me. We have gone through so much and I always believed that we would beat this. You and I were supposed to grow old together. It’s been almost 10 months now. It still feels so raw.

The good days come in bigger stretches. It doesn’t make it easier or make me miss you less. There is still that voice in my head that tells me life isn’t worth living without you. It’s so much more difficult on your birthday and Valentine’s day. I miss the feel of your hands holding me. The smell of your cologne when I nuzzle you. Most of all I miss your presence. We would have celebrated your 60th birthday. I’m so lost. I’m trying to be strong and brave. To live life to the fullest.

Thank you, baby, thank you for coming into my life and teaching me to love fully and unconditionally. Thank you for teaching me to feel. Thank you for believing in me. I will love you always.

Barely Holding Myself Together

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Our house has always been the house where the kids hung out with their friends. Correction, it continues to be the house. When Rachel and Joe were in high school, they’re friends came over all the time. There were a few who had issues in their lives. And they knew that we would be there for them. One child had a key to our home. If things got out of hand he could come directly here. Some of these kids spent a couple of weeks with us. They would do whatever we did as a family. This was also a place they could swim, read, play video games, talk or just hang out. Joe became friends with “Pyro” (Travis, now known as Patt from his service days). These two were close. Travis was nicknamed Pyro because of an incident with fire and I’ll leave it at that. Joe and Pyro would always be up to something. Climbing out the tiny front window of Joe’s room to go out at night and run. Dave would get so mad at them because he had to constantly fix the screen. One day I was making dinner and I heard a thud on the wall, then another, then another. I go back to Joe’s room and they had been bouncing Isabella’s baby shoes off the wall. I think they also did pull ups on the drapery rods. Just being boys. At times’ he would spend a week or two with us. No one ever called to check on him. He went through so much as a kid.

Today when Bella and I were out, Joe asked me if I remembered Pyro. As a matter of fact, Rachel and I were just talking about him on Tuesday. That’s when Joe told me that he was gone. The last memory I have of him was the last day of ROTC senior year. I had been room mom the entire time Joe was in ROTC. At the end of year, the kids would talk Sgt. K into letting them have a party. They would set up Xboxes, TV’s, and I would make they’re snack request. Nachos, Big Pickles, Frito Pie, Queso and the chocolate fountain. Pyro, Joe and Nick having a blast. Right after graduation he married his girlfriend and joined the Army. He wanted so badly to drive tanks. And that’s exactly what he got to do. The reality of Iran and Afghanistan coupled with his choric pain and PTSD was just too much for him to handle. It pains me so. A young man in his 20’s. My heart aches for his wife. I can still see her in her ROTC uniform. Her eyes intently focused on him. They were inseparable. Two kids from broken families. Joe says “She loved the hell out of him!”. I know my pain of losing my husband. I would never even begin to know hers. All I can do is say that I love you both.

 

Paper Snowflakes and Sadness

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We are right in the middle of the holiday season. I don’t feel very cheery. I’ve been putting up Christmas decorations with a heavy heart. Every year Dave would cut paper snowflake at my request. He’d grumble (just for show) and happily cut intricate designs. Making hundreds of snowflakes. I would hang them everywhere. Whenever friends came by, they would marvel at them and they would go home with snowflakes that Dave gave them. These snowflakes have traveled many miles. I’ve save them all. Some are worn but I don’t care. Each one reminds me of his laughter, his smile and his love. Even tho’ he’s not here, he surrounds me. I miss him so very much.

Grieving requires enormous energy, but pretending that you’re not grieving requires even more. You begin to sense that your world is anxious for you to get on with your life, and that no one understands that this is your life and you are getting on with it. “This is it, folks.” Then other times you pretend and you wear a mask and perform like a trained seal just to keep what’s left of your world from leaving you.
– Sue Catherine Holtkamp, Ph.D. “Grieving With Hope: A Personal Journey”

Bella and I will go on pretending to be ok. Meanwhile, we lock ourselves away in the house, in my room putting together the shattered pieces of our life. We hold on tight to what we have left, each other.

Living in the Purple Light

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Tonight my family and I will attend Purple Light at the front of the Capital Building in Austin, Texas. Purple Light is an event where pancreatic cancer survivors, patients, family members, friends and community gather to honor and remember survivors, patients and those we’ve lost to this beast. I wrote the following on Dec 1, 2015.

“That got me to thinking about the first ever Pancreatic Cancer event we went to. I visualized the picnic tables. No one speaking. I remember that I got up a couple of times. I can’t sit still. I have to check stuff out. Decided to Periscope a bit. I looked around as the crowd began to grow. Little clusters of people in various sized groups. When I came back to the table everyone was quiet, looking around, messing on their phones. It didn’t seem to me that many people knew each other. Except for the people in charge. Today I read a story about a mother who killed her child then herself in a hospital. What brings a person to that point in life, where all reason and hope is lost. Where is the disconnect? In this modern era, information is a finger click away. Be it a computer, phone or whatever electronic gadget does it for you. I bet there are some who go days without face to face interaction. Somewhere along the line we’ve forgotten the human element. The people right here, right now, who are suffering. What can we do to ease their stress and worry? What real tangible help can we offer?”

On our ride back home, Dave and I discussed the event. We were commenting that the reading of the survivors list of names was one page long to the four pages of names read of people who lost their lives to this beast. Dave said he didn’t want to go back. He didn’t want to meet people that weren’t going to be there next year. My heart weeps when I think of that day. He is one of the people that is not there this year. I struggled with deciding what I was going to do. I have to go. Dave deserves to be honored and remembered for the battle that he fought. Thru immense pain he continued to smile, he continued to be strong, positive and brave. In Zen meditation it is believed that the color purple promotes strength, spiritual growth and healing.
I want to raise my light as high as I can, standing on the tips of my toes. I want to shine that purple light for Dave. I know he will be there right beside me, raising awareness, smiling and living thru us to raise awareness and hope for those who continue the fight.

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If the outcome of this election has done anything to me. It’s been that I have been slapped in the face & told to get my shit together before Obama leaves. If #ACA goes away, Isabella & I are fucked. If survivors benefits go away. We will be in complete & total poverty within a year. Time to make some big decisions. Isabella held on to me as she cried herself asleep.

I cry as I prepare myself for the next battle. Fuck you 2016.

It’s just you and me

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One of the things that is difficult to get used to is not having someone to talk to, console you or make you feel like the most important person on earth. In just a few days, it will be six months since Dave passed. The other night I was feeling particularly low. On those nights I curse cancer and the endless stream of bad shit that keeps happening. Fate brought a stranger to me. This stranger rubbed my nose in my selfishness and forced me to realize what a whiny little bitch I am. So many people have it worse than me. So what, my husband died, so what, my life is in shambles. I’m trying, no I will be happy, I will move forward, I will put all the pain and hurt in the deep dark part of my brain.

As I start to reenter the land of the living, I am being pursued by an old boyfriend and the manager of our neighborhood Jack in the box. I really don’t know the guy. My only interaction with him has been in the drive thru while getting food for Bella. It’s her favorite place. She loved California because they were all over the place. He’s cute and seems nice. It’s just that he’s too young. He has two baby mamas. I learned all this in the drive thru. The way he speaks to me gives me the creeps. Plus, he’s told me his name twice and it was two different names. I don’t really care to know which one it is. The story on the ex-boyfriend, I dated him before I was with Dave. We also dated during the time that Dave and I broke up. We’ve stayed in touch throughout the years. I’ve helped him when he needed me. He in turn fucked me over and left me at my time of need. That was the last straw. When I care enough about you to tell you that I will be there whenever you need me, it’s true. When I open my heart to you, I will stand by you through everything. The minute you fuck me over, I have no use for you. Enough of this crap.

I had been feeling so overwhelmed lately. I let my brother move in with Bella and I. It’s been a big adjustment. The stress I’ve been feeling has been enormous. Bella has been pretty stressed out herself. I’ve been promising her a vacation. She really wants to go to Hawaii. I just couldn’t make that happen right now. I took all of our frequent flyer miles and free hotel nights and booked a flight to Los Angeles. Dave had promised to take her to Universal. Just when we convinced him to take some trips, he got really sick and died. They had spoken about going to the Wizarding World of Harry Potter and getting wands, drinking butterbeer and doing all the Harry Potter related stuff. They were both so excited for the possibility. She was very surprised that we were going. She absolutely loved the trip. She loved going to Malibu and running into the waves on the beach. She thanked me a million times. I was so great to see her smile and run and just have fun being herself. She wants to travel and see places and experience all the things her dad talked about. Deep down inside she tries to bury the pain she feels for not being there at hospice when Dave passed. It’s the pain that haunts her while she sleeps. The only thing I can do is comfort her and tell her that her daddy loved her very much. I tell her how much he wanted to have her. And while she sleeps I carry on what he did every night. I whisper in her ear while she sleeps, Daddy loves you.