Four Months, Four Years

Four months ago, I said goodbye to my husband. For nearly a year, he dealt with disability from the stroke he had during surgery and the treatments associated with cancer. His 35 years of living cut short, way too soon, I believe. It seems to me that time has passed very quickly. So much has happened in four short months. The kids are finished with school. Tristan and Melayna continue to do well in karate. We've been to Denver Comic Con, a Lindsey Stirling concert, hiking, Itz with Grandpa and Grandma, and so much more. I have remained ever so busy with kickboxing, Zumba, gym workouts, and more. Life is moving on without him. We are adjusting to the change. And that's how its going to be. Adjustments and moving on. It hurts, though. Last week, I had a day where I was in complete despair. I lost count of how many times I broke down and cried. I even cried on the treadmill during my lunch break. Fortunately, I had a few friends at work to help me through my day. I have my good days and my bad days. For the most part, the good ones outweigh the bad ones and this is definitely a good thing. On my bad days, I sometimes feel like giving up, where I would want to crawl in my covers and ignore the day away. My heart is heavy and hurts with a pain that at times seems so unbearable.

Today, however, not only marks four months since his passing, but four years since we officially married. It is our anniversary today. Last year, he plotted with a friend and had her surprise me at work with 10 roses (one for each year we had been together) and a ribbon with each year we've been married. He also had her playing "My Best Friend" by Tim McGraw as I came to my desk. (http://m.youtube.com/watch?v=9aGkwbnWaIo).

Despite his limitations, he still managed to make sure our anniversary was special and memorable. I'm sure something he wanted to make sure he did as he wasn't the most romantic person in previous years. It was a very sweet and sincere gesture. Something I truly appreciated.

Little did I know that it would be the last anniversary he and I would celebrate together. I am jealous of couples who have been together for so many years. Decades of companionship and love. Something I fear I won't ever get to experience again. I am hopeful, but I still worry. Will I be in my seventies and all alone? Or will someone steal the broken pieces of my heart and slowly help me put them back together? I digress.

My mind is an intricate web of various thoughts and memories, spun in a chaotic pattern of worries, what-ifs, should of's, and could of's. I dwell on the past, as well as the future. Sometimes I think that I should have pushed Scott to fight harder and I feel guilty for not having done so. Then I realize his prognosis was grim to begin with and no matter how much he fought, he was doomed to succumb to the cancer. I wonder if the choices I have made so far are the right ones. Am I doing right by honoring his memory? Am I providing the kids with the best I can? Am I being selfish in my personal relationships? How am I going to juggle work life, family life, social life, etc.? Can I do it all, especially by myself?It is painfully scary to think that the raising of my children now fall squarely on my shoulders.

So many things in my mind. Always racing. Constantly thinking, contemplating. I suffer at night with sleepless nights. I suffer during the day from exhaustion and my tendency to be so easily distracted. However, most days I put on a smile and hope that the pain can be masked by my dimples and ear-to-ear grin. I think only those who know me well can see through my facade.

What keeps me going? Well, first off, knowing that I need to be there for my kids is my primary motivation to put one foot in front of the other. They need me. They need stability, predictability. They need me to be their mother.

Second, my desire to find happiness and fulfillment in life is a secondary motivation. I am only 32 years old. If I am one of the lucky ones, I have at least another 40 years to live life. I plan to grow old and see my children get married and start families of their own. If I am really lucky, I'll even get to see my great grandchildren. That's my hope. Quite frankly, I hope that it will be by someone's side. This means a lifestyle change is necessary. I need to become a healthier person if I am to ensure a longer life to see my children grow up and perhaps their children also grow up.

How do I cope?
I cry.
I write.
I think.
I rely on friends.
I distract myself.
My biggest coping mechanism, however, is exercise.
If I am stressed, I run or walk. If I am frustrated, I punch and kick harder in kickboxing. If I am sad, I shake my booty with all I got in Zumba. And soon, I will pedal a bike and shed my tears.

Each pound of fat I shed represents the stress and frustration I have been feeling. It represents the pain and sorrow I feel.

Each new muscle I find, sore and tender from the previous day's workout, represents the hope and determination I have to better myself and be the example my children need.

Some days I really don't know how I do it. But I do. I guess that's what's important. I guess that is what matters. Right? As long as I truly do not give up, then I can get through all this.

Happy Anniversary, Scott Hooper
I wish you were here to celebrate it with me.

I miss you so much. 

I am thankful for our friends and family who have helped me through these past four months; otherwise, I don't think I'd cope this well without them.
You left us way too soon and you are missed by so many.

Love,
Mary

Single parenthood

“As a single mother, breaking down is one of the hardest things because there's no one to help pick you back up again”

I read this in an article and it could be more true or applicable to my own life. I have sometimes said that I have been a single parent since Scott was originally diagnosed with brain cancer. He was in the hospital for a month and a half. All of us had to make adjustments to our lives and schedules. When he came home, he could help somewhat with parenting, but not to the extent he was able to before his surgery. His disability meant that we took care of him and helped to provide for his needs. There was a point when he became more mobile and was able to help out in small ways, but ultimately, I was the chauffeur, the caretaker, the errand runner, the cook, the cleaner, the organizer, etc. The one thing, though, that I didn’t experience while Scott was alive, at least for the most part, was the unending loneliness and dealing with breakdowns alone. For the most part, once Scott was home, I could breakdown and he would let me cry on his chest. Often, he would cry with me, knowing that the source of my pain and sorrow was due to the circumstances surrounding him. I had moments, though, where I would wait until he was sleeping, or I was alone, such as in the car, to breakdown. To cry out my pain. Sometimes, I preferred it that way. Others would only see me as strong and able to endure the hand we had been dealt. However, now that Scott is no longer alive, I hate it. Every time I am sad and I become overwhelmed with emotion, I have to turn myself around. I have to convince myself that everything will be okay.

As our 4^th anniversary approaches, four months after he passed away, I find myself losing control. For the last three months, I've kept it all in check. My grief only manifested in brief, sporadic spurts. Manageable, it was. However, last week, Tristan was texting me (I gave him Scott’s phone). He messaged me: I miss daddy. The text was preceded by a string of sad, crying emoticons and a few angry emoticons. My baby is hurting. He only brings it up every now and then. But it definitely tugs at my heartstrings. Wednesday, last week, I noticed that Melayna was very clingy with a male friend. She loves this man. He later told me that she said to him that she wished he could be her daddy. She apparently said the same thing to another male friend. She wants my dad, her grandpa, to carry her; she's very cuddly with him. She’s craving attention from male figures in her life to compensate for her daddy no longer being here. Again, another thing that has me in this constant emotional upheaval. Quick to breakdown, tears welling up in my eyes, and uncontrollable sadness. Another thing that happened recently was while I was babysitting the children Scott used to babysit. These two kids were a big part of our lives for years. I love them so much and miss having them around. Their father and I have been hanging out quite a bit lately. Scott and him were really good friends and I want to say that he is now one of my best friends. When he needed help with watching his kids this weekend, I told him, I’d be happy to. As I was tucking in one of the kids the other night, he said to me that he missed Scott. He told me that twice that night. My children aren’t the only one hurting. My heart hurts so much for all of them and I’m not sure how much my heart can handle.

Breaking down. It just keeps happening. I try to find happiness, but it eludes me. For the first time, exercise wasn’t the drug I needed it to be. I cried on my drive home from Zumba last night. Today, I cried while jogging on the treadmill. I cried before work. After work. During work. My emotions are spiraling out of control and I don't like it one bit. I hate it, in fact. I normally can keep myself under control. Keep my emotions in check. I was able to talk about Scott and his passing without breaking down. Now, not so much. 

I know that eventually I will be okay. I know that tomorrow is another day. But for now, I am sad. For now, I feel hopeless and helpless. For now, my breaking point has been reached and I am going to cry. And the pieces will be mine to put together. No one else can do that. And the person that could, is now no longer here.

B Strong Ride!!

I've finally registered! Check out my site for what I'm doing, why I'm doing it, and how you can help!
https://fundraising.active.com/fundraiser/MaryHooper



To get me through the race, I got myself this pretty thing! A new road bike just for me.
I will be riding 24 miles in honor of Scott. Please support me if you can!

Moving on

I often get asked by friends how am I doing and how are the kids doing. They are concerned about my well-being. They are concerned about how I am emotionally. How I am coping with losing Scott. I think they are somewhat surprised to hear that I am doing just fine. And truthfully, I am doing just fine and part of me feels somewhat guilty for feeling ‘just fine’.
A month and a half has passed since Scott died. Not a day goes by that I don’t miss him. But am I so broken hearted that life stops and I can’t go on? No, of course not. And that’s not what Scott would have wanted me to do. Be depressed, unproductive, and not in the present for our children or in my life.
I’ve been told that everyone copes with loss in many different ways. Some handle loss much better than others. I believe I fall into that category. But in my defense, I have been grieving for over a year. Our cancer journey began February 18th, 2014. It was during that time, that I had to cope with the news that my husband had cancer. I refused to look up Glioblastoma right away. I didn’t want to know the truth. Not until I was ready. When Scott had surgery and was then faced with disability, I began grieving in a different way. I grieved over losing what my husband used to be. A strong, independent, protector to a broken, dependent, and depressed man. Scott had a hard time coping with his disability. At first he was in denial. As the reality of it sank in and the difficulty he had with overcoming his disability proved to be a much harder task than he had anticipated; he became depressed. He hated himself and what he had become. Furthermore, as we learned about the extent of his cancer and what life expectancy he might have, he really became depressed about missing out on the children growing up and growing old with me. Initially, I grieved over what Scott once was. Tall, strong, capable. I missed it so much. I hoped and wished that Scott would regain mobility on his left side fully, so we could resume our ‘normal’ lives. It took me a long time to finally accept that Scott wasn’t going to regain all of his mobility and that he was a changed man due to it and his cancer diagnosis. Once I came to accept our new ‘norm’, I finally could let the old Scott go. This newer version of him, though, was still great. Despite feeling defeated at times, he still managed to rock out physical therapy and start walking with the use of a walker and ankle-foot orthotic device. He still found joy in life – not all the time, but most of it. And, of course, I still loved him.
When we found out about the metastasis to his spine and brain stem and learned that his life expectancy had been significantly shortened, the grieving process for losing him completely went into overdrive. Up to this point, I knew that he had a terminal cancer. I knew that the average life expectancy was 15 months, but I also knew that some people live longer. I held on to that hope. His scan in September came back good. No new growth they said. In October, the spinal MRI was a game changer. At that point, I had to finally accept that he was going to fall short of the 15 month average. We’d have to settle for about a year. It was depressing. I remember we went for a walk that night we found out. I pushed him in his wheelchair. The evening air was cool and crisp. We cried. We mourned for his life.
Fortunately, Scott didn’t suffer too long. He entered hospice care January 21st and died February 3rd. He deteriorated fast. But that meant he didn’t feel much pain and discomfort. We had him on round the clock morphine and other medications to ease the swelling and pain. And while I was deeply saddened to see him go, I was glad he was no longer suffering.
In short, I’ve mourned my husband in two different ways and both over a long period of time. We’ve had the chance to talk about my future and what he hoped for me. He wanted me to be happy. He wanted me to live life for him. He wanted me to move on. He did not want me to dwell on the past. He did not want me to be depressed and completely heartbroken. I appreciate that he expressed these feelings and thoughts with me. That is what gives me hope. That is what makes me feel better about moving forward in life.
I will always remember him. I will always love him. He will forever be a part of me.
I plan to honor him by continuing his bucket list and finishing as much as I can. I plan to honor him by doing the Spartan Race in his honor (we have a team called Hooperpalooza) and by signing up for the B Strong Ride in Boulder, Colorado, which benefits cancer patients at the local hospital. I plan to honor Scott, by continuing to run Star Trek: Attack Wing tournaments at a local game store. I plan to honor him by teaching our children to be geeks just like him and me. I plan to honor him by raising our children in a way that would have made him proud. I plan to honor him by eventually moving on and opening my heart to another person, allowing them to care for me and love me like he would have done. I plan to honor him by reminding my children what an amazing husband, father, and man he was.
Life has been keeping me busy and I’ve been challenging myself in so many ways. I recently started kickboxing and I’ve been going regularly to Zumba. I plan to start spinning class to train for the 24 mile bike ride in August. I go for evening jogs and try to maintain my fitness and nutrition goals everyday. I am trying to make positive changes in my life. I want to get in shape, not only for the races, but to lose weight, feel good, and ensure that I will live a long, healthy life (at least what I can control, that is). I want to be a good role model for my children as well. And, of course, I need to ensure that I can keep up with them since it is now just me raising them.
Besides being active, I have lots of plans for me and the kids. This weekend is Colorado Cosmic Con. It’ll be our first convention and I’m very excited. Next month, I get to see LeVar Burton speak. In May, I have the Spartan Race, the Inflatable 5k, Denver Comic Con, and a Lindsey Stirling concert. And I have much more planned for the future.
For anyone reading this, remember, that we all cope in different ways. But also remember, that life can and does go on. It is a tough pill to swallow, but ultimately, your heart will heal and the pain will become less and less over time. I am still fresh into my loss, but I have been feeling really good. I am sad at times, but otherwise, I’m productive, happy, and enjoying life. Guilt over moving on is also absolutely normal. You will feel like you are betraying your loved one by moving on. The fact of the matter is that most people, when they are about to leave a spouse behind, would want their spouse to not be alone and to hopefully find someone that can fill that void. So many feelings encompass you as you cope with your loss, but however you do cope, remember it is normal, so long as it isn’t destructive (to oneself or to others). Just remember, there is hope and you have the strength within you.

One month ago

I cannot believe that a month has gone by since Scott passed away. His presence in our lives, absent for 28 days, is dearly missed. A month ago they took his body away and I utterly broke down, throwing myself on his hospital bed. There are times where I forget he is no longer alive. A brief moment where I think: I have to show Scott this. As quickly as the thought would come, it fades away into emptiness and sadness. I remind myself that I cannot show him anything. I cannot tell him anything. He is gone.
I sometimes find it hard to believe that he is not here any longer. That I will not get to feel his hand caressing my cheek. I will never feel his lips against mine. I will never be able to curl up in his arms with my head upon his chest, rising with each breath.
I got lucky with him. Being a larger woman, my opinions about how I look are not exactly positive. Scott, however, never made me feel ugly. He never made me feel unloved. He always reminded me of how beautiful, smart, wonderful, and amazing I was to him. He would brag about me to his friends. He would boast about what an awesome mother I was. He told me many times that he was the luckiest man alive to have found me and to have my love in return for his. I have no doubt that he loved me more than anything in the world. We were meant for each other. Soul mates.
But now he’s gone. I feel as if my soul were ripped in two. My essence and being forever changed by the mark he left in my heart and mind. The love of my life, gone and never to return.
It hurts. So much. But I am good at hiding it. I am really good at distracting myself. I keep telling myself and others that Scott would not want me to be depressed and to live in misery. He would want me to move on, to live life, to live for him, and to be happy. I have definitely had happy moments. But at times, these moments are filled with a little bit of guilt. Should I be more depressed and sad? Am I not grieving in the right way? Do I appear too happy? Can some see through the façade that I have put on display? Do I cry too much? Do I cry too little?
I do not know the answers to all these questions. I have heard that everyone grieves in their own ways. So, what may be right for one person, may be too much or too little for another. I have been told that I have been coping extremely well. Which is fairly true. While in the presence of others, I tend to keep a positive demeanor and be my normal “bubbly” self. Every once in a while, someone will throw me off guard and I talk about Scott, the kids, and other aspects of our cancer journey and losing him. I am usually skilled at holding back tears, which linger at the surface ready to explode at any moment.
Sometimes, I feel like I have cried so much over the last year, that I cannot cry anymore. My tear ducts have run on overdrive and they are quite tired. Instead of tears, I have noticed that I get aches in my chest. A real pain sears through my heart causing me to gasp and choke. I feel that this is something that will take quite some time to fade away. The intensity diminishing over time. It is not something that will suddenly go away.
One month ago, Scott took his final breath and left this world. The first of many months to come. I know what it feels like to lose someone. I know the pain will never go away. I know that it lessens over time, but a hole will remain for as long as I shall live.
I leave you with a poem. This is modified from the original version, which was printed in the memorial folders (service programs).

When I come to the end of my journey
And I travel my last weary mile
Just forget if you can, that I ever frowned
And remember only the smile

 

Forget unkind words I have spoken
Remember some good I have done
Forget that I ever had heartache
And remember I've had loads of fun

 

Forget that I've stumbled and blundered
And sometimes fell by the way
Remember I have fought some hard battles
And won, ere the close of the day

 

Then forget to grieve for my going
I would not have you sad for a day
Lay out a good board game
And remember a time we played

 

And come in the shade of evening
When the sun paints the sky in the west
Stand for a few moments beside me
And remember only my best

A Year Ago…

February 18th, 2014 was a day that made its mark on the Hooper household. We found out Scott had a tumor and that it was likely cancerous. Our lives turned upside-down in an instant. I wrote about that eventful day here.

The average time someone with Glioblastoma lives for is 15 months. Just 15 months. Can you believe that? Scott did not quite make it to 12 months. We were told that because of his age and how well he responded to treatment, he might be one of the lucky few people who lives years and not months. Sadly, this was not the case.

I’ll tell you, though. So much can happen in one year. Our lives can pass us in the blink of an eye. Our children grow up too quickly. Before we know it, you’re old and surrounded by grandchildren. But really, stop and think, how much can you fit into 365 days? One year of your life. 525,600 minutes gone by.

When you find out that your timeline is much more finite than you had originally expected, what would you do?

I’ll tell you what Scott did. First off, it is not the glamorous, take life by the reins and live life to its absolute fullest. At least not necessarily for Scott. He had a disability to overcome. A disability which meant over 40 days living in the hospital doing therapy and learning how to adjust his life in accordance with his abilities. It meant loneliness for him as I could not be there every minute of every day. My life was consumed with taking care of children and finding us a home. It meant sadness and depression. He eventually was no longer in denial and he had to come face-to-face with brain cancer and a disability. He had to come to terms that he would be dependent upon me, his mother, and others around him. He might never get to work again. He felt useless. Helpless. Hopeless.

I can’t speak from personal experience, but I can speak from observation. When someone learns that he or she is going to die, they appear to go through the stages of grief. Grief over the life they once had and grief for the life they will miss when they are gone. Scott went through many of those stages, while in the hospital and after he came home.

We talked about legacies he could leave behind for the kids. Video recordings for each one of them that he could create. But just talking about it would leave him sobbing. The thought of his babies growing up without him in their lives tore at his being. It is something no one ever really thinks about. Eventually, though, he was resolved to having more pictures of him, especially with the kids. Eventually, though, he came to the realization that he needs to enjoy life and to create wonderful memories with me and the children. And we did just that. We did so many things with him and created so many wonderful memories. And while I think we still could have done so much more, I can say that without a doubt, we had fun and we did make the most of what time he did have left.

“Man walks down the street in that hat, people know he's not afraid of anything.” – Wash, Firefly

A pain I’ve never felt before

I still can’t believe he’s gone.

The day he died, I woke up to a change in his breathing pattern. Short, rapid, shallow breaths. And the gurgling noise. He was no longer coughing to clear it out. And he wasn’t responding to me.
I remember calling Ginia. I reported the change and she suggested I clear out the excess mucus and use a medication in our emergency kit to reduce secretions in the mouth. I started to clear his mouth out when he instinctively started to cough. The coughing got bad enough to cause him to vomit. All of it was just bile. He hadn’t eaten in five days. Ginia got the on call nurse to head on over and while I was off the phone, Scott puked again. This time projectile vomit all over me and the floor.

After Jane arrived, I started to wake up the younger two kids and take a shower to clean up. I got the younger kids ready to go and my dad and Gloria took them to school. We told the older two what was going on and they opted to stay home. I remember at some point my dad and Gloria taking them out for lunch and to the mall. I remember Jane leaving and Lisa taking over, then Ginia coming over as well. They told us he may have just a few hours left.

I remember talking to him. Holding his hand. Caressing his cheek and hair. I remember kissing him many times.

I found myself playing music for him. “Best Friend” by Tim McGraw. Music from the Lilo & Stitch soundtrack.

I reminisced by browsing through old pictures and watching old videos. Lisa and Ginia listened the videos from the other side of the room.

Hours went by and not much change. A flood of warm wishes, thoughts, prayers, and offers to help filled up in the comment section of my post saying that Scott has taken a turn for the worse.

Eventually, the kids were picked up and home with us. My dad and Gloria went home. The kids kept themselves occupied in the living room.
I received a text from my friend Dani asking if I wanted her to come over. I finally said yes. She came by around 5:00pm. We started to get dinner in the oven when she came. Then we sat in the room just chatting away about Neil deGrasse Tyson and other funny things. Just before 5:30 we noticed there was a change. His breathing slowed considerably. At least half of what it was. We stopped talking and paid close attention to him. After only a few minutes, his chest swelled and he let out a loud sigh. But no breath came in. His head jerked a couple times, his left arm and leg tightened. Then a stillness that caught me off guard. His mother pressed her fingers to his neck. She swears she feels something. But then thinks it could be her own fingers. I put my ear against his chest. Again, the stillness. No breath. No heartbeat. Nothing. He was gone. It was 5:33pm.

I remember Dani behind me, her hands on my shoulders as Scott took his final breaths. I remember feeling pain, but a sense of relief as I know that he is no longer suffering. I am not surprised that Scott waited until my friend Dani came to be there. I think he wanted to be sure I had the support he set up prior to his passing. Scott was really worried about me. He knew that I’d take care of the kids. That they would be fine. Me, on the other hand, he was concerned. I tend to take care of others before I take care of myself. He knew that I am a sensitive person. His caring for me began the day he went into surgery. I was crying. I was worried about him. He looked at our friends, Jenny and Jose, and told them “Make her smile”. He wasn’t worried about going into surgery! He was worried about me. He’s asked Dani to look after me when he was gone. He made her promise. He took his final breaths once he knew she was there for me. Her hands on my shoulder and ready to be there for me.

The rest of the evening was somewhat of a blur. Jenny and Jose came over to say goodbye. Ginia and Jeff came over to mark official time of death and to call the funeral home. We brought the kids in the room to also say goodbye. I remember the older girls crying. I remember Melayna looked at Scott and she started to cry. I picked her up and she began to look away from Scott. She was too overwhelmed. I asked her if she wanted to leave the room and she shook her head yes. I handed her off to Jenny and quickly turned my attention to Tristan. He was looking up at pictures hanging on my wall. Tears held back. I took him in my arms and he wept for a bit. Hayley came to hug us both. Tristan then asked if he could go play on his Kindle and, of course, I let him.

 

I remember at one point wanting to be alone with Scott, but Kate would not leave his side. In fact, she pretty much stayed with him the entire time, only leaving for an appointment earlier in the day and to occasionally take care of her dog. My friend Jenny stole her away from him so I could have some time alone. I didn’t get much time, but enough to talk to him, cry over him, kiss him, touch him. I so desperately wanted him to open his eyes and talk to me. Kiss me back. Squeeze my hand. Anything. But it wouldn’t happen. Not this time. Not ever.

Ginia and Jeff came into the room and both talked to me about dying. Their views on death. Much of it, I found very comforting. While we were talking, though, the funeral home showed up. I departed from my bedroom and went into the kitchen. After a few minutes, they told me I can say one last goodbye. He was covered with only his neck and head exposed. I kissed him. I told him that I love him. And I backed away. I could hear them take him away. I looked out the door as they wheel the stretcher to the van. I held on until he was out of sight.

What happened next was something I did not know I was capable of. I went to our bedroom to see his empty hospital bed. His sheets stained from the vomiting he did early that morning. That did not stop me from collapsing on his bed and curling up while I wailed an awful sound. I cried harder than I had ever cried before. I screamed for him. My chest was on fire, aching for him. Wanting so desperately to bring him back. I remember my dad was there, rubbing my arm, trying to soothe me. I remember him saying that this was a long time coming and that I had been holding it all in for so long. That I had been so strong for everyone. I remember Jenny and Jose behind me. Rubbing my back. I don’t know how long I cried for. How long I rocked myself while laying in his bed. They just let me cry. The let me wail in pain and sorrow.

*************************

Today, I’ve spent five hours today cleaning my garage. Going through things. Letting go of things I no longer need. Reminiscing over things Scott and I shared together. Since Tuesday, I really haven’t spent much time on my own. An hour here or there, but really, my friends all spent time with me in a tag team format. The guys helped with things around the house. Jenny and Dani made sure I had the company I needed to cope with losing Scott. I stayed up late and got little sleep. I cleaned and organized. I kept myself busy.

The kids quickly returned to school. They’d gone through this before. When Scott first went into the hospital, they were out for nearly a week. This time, they returned after only one day off (two for the girls). We told them all that if they are having a bad day, though, to call and Grandpa and Grandma would come get them. I did get a call. But not to come pick one of them up. Tristan asked his teacher if he could call me to tell me that he was having a good day. Just like his daddy, he was more concerned about me then himself. My bubbas, so empathetic. So loving. Definitely a momma’s boy.

I’ve been trying to remain positive and keep up my usual bubbly self. I don’t want something like this to bring me down. Scott wouldn’t have wanted that. I do have my moments of sadness. I could just be numbing myself to the pain by all these distractions. I can say that my friends have definitely helped me to smile and laugh. Again, something Scott would have wanted. I went to Melayna’s hundred day celebration at school yesterday. She was very excited to see me there.

And of course, Ginia goaded me into signing up for the Spartan Race. What have I gotten myself into? I’ve got a lot of work to do. If you’re in Colorado, please consider joining us. We are Team: Hooperpalooza. Our wave time is 1pm on May 2nd at Fort Carson. Click here for details: http://www.spartan.com/

The service has been scheduled. Now there is much to be done. But that’s okay. Things to stay focused on. To keep me busy.

The last sunset

Picture taken by Kevin Ahrens of Kev’s Kaptures
This photo was taken ten minutes after Scott passed away.

Dani Renaud
February 3 at 6:19pm

I'm so sorry to announce that Scott Hooper, beloved husband, father, friend, and son passed away at 5:30pm tonight. You will be so very missed by so many people. I love you. You may have gone but many people will be here to love and support your family through this hard time and for years to come.

Thank you all for your support and love for the Hoopers through this difficult time. They and especially Mary appreciate it more than you know.

The unthinkable

Scott has taken a turn for the worse. We are told it may be hours. I woke up at 5am this morning to a different pace of breathing, very shallow and rapid. He also isn’t responsive; he’s unconscious. This is it. His nurses have been here, switching off all morning. Checking him occasionally and doing their chart work in between. I have a permanent knot in my stomach. I don’t know what to do.

Birthday Video

A week ago we celebrated Scott’s birthday and his life. I hired a videographer to capture this special occasion. Dusty from Cinepro Studios captured the feeling, the emotion, and the love so beautifully. You might want to have a tissue or two handy.

Preparations

This morning, I made a trip that I have been dreading for quite some time. A couple of friends accompanied me to some funeral homes as I plan for the inevitable. Unfortunately, the time is drawing near. Since his seizure the other day, we have noticed a decline in his condition. His nurses have been by the house everyday since. I settled with a funeral home that I think will serve our needs. The staff was courteous, professional, and very warm and welcoming.

Two nights ago, Scott became unresponsive (staring blankly), his breathing labored, and he would not eat or drink. Then he was very agitated, pulling his sheets and blankets and trying to pull his bed rail off. It was a long night but eventually the meds his nurse gave him kicked in and he was finally able to rest.

Yesterday morning, his nurse decided to stop all oral medications because he is having difficulties swallowing. He didn't eat anything at all yesterday and barely drinks water. We don't know how long he will hold out for, but we feel it is close. So now, all we can do, is keep him comfortable, tell him we love him, and prepare for what's to come.

 

Scott’s best friend, Clarence, wrote this to our group page:

Scott, my wish is that this message gets to you before you go. Although I am restating what you already know I want to tell you that you are so loved, By your family and friend far and wide. You are an inspiration to many because of the kind of man you turned out to be. While your body breaks our hearts break with it. And when you're gone, the void you leave will never be filled. We will cope and have memories of our theatre days, for some they will remember times in the sound booth or in class. Others have times watching WCW or WWF, we'll have D&D, Magic the Gathering, or just walking around IB because we could. Please know that when you are gone your family will still be cared for and we will be here to help them through their grieving.

I'm going to change it up a bit. While scott and I was waiting for Matthew he shared some serious thoughts but even though it was a grim mood he wanted to joke still so I will end by saying. Scott if you decide to haunt us it better be like some Patrick Swazey style Ghost shit. If you go all poltergeist on us I will find that exorcism lady and we will have to listen to her annoying voice together. We love you Scott.

Seizure

Today was rough. Scott had a seizure this morning. His mom called me and all I could understand was that something is wrong and he stopped breathing. I headed home, driving much faster than the speed limit. My only thought was 'please wait'. One of his nurses was already there when I got home. She checked him out and concluded it was a seizure. They've changed him to a stronger anti-seizure medication and gave us guidance on what to do if this happens again. Each day that passes he seems weaker and weaker. He eats so little and still occasionally gets sick. The differences of how Scott looked just a week ago to today are frightening.

Today was a scary day and definitely not the first scary day nor the last.

On top of all this, I've definitely come down with something. For now it is just a cough. I hope it doesn't get too bad though. Besides taking care of Scott and the kids, a friend is taking me to see Neil deGrasse Tyson on Friday.

Well, time to get some rest. I am likely turning in early tonight. I'm exhausted and my body is screaming at me.

Pictures & an update

What do you think of when you hear the word hospice? Before all this, I envisioned a nursing home. I envisioned nurses and round the clock care. I remember my grandmother in her final days. That's what I envisioned.

For Scott, starting hospice means he is no longer seeking treatment for the cancer. He decided last week that he didn't want to continue doing the treatment. He tried the Avastin last week and as he went home he got sick in the car. He continued to be sick for the next several days. This was after we were told that the treatment option Scott decided to try should not cause him to be overly sick.

When you are told you have an untreatable illness and it will result in your passing, often times you begin to weigh in quality over quantity. Is taking a treatment and being sick every other week work the extra month it might give you? These are very difficult decisions and Scott did not come to it lightly. He still wishes to live, but does understand the gravity of his situation.

With all that said, when a terminal patient decides to no longer seek treatment, hospice care is the next logical step. He is now under in-home hospice care. We have met with nurses over the last few days. They delivered a bed that gives Scott the ability to sit up more easily to watch tv or play on his iPad. They bring him medications and are looking at different medications to manage his symptoms better. They offer counseling services for all of us, kids included. They are accessible 24 hours a day, 7 days a week should anything come up - big or small. They have volunteers that can come and be with Scott so if I need to be somewhere (e.g. school functions, work meeting, etc). While things have been stressful, I am thankful for the people we've met through hospice. They've been so understanding and helpful.

Scotts sleeps a lot. I'd say more of his day is spent sleeping than awake. He has been getting sick nearly everyday for over a week. He gets headaches and forgets things or confuses easily. And I’m sure it was quite evident that Scott looked quite under the weather at his party. Scott is now unable to get out of bed safely and is bedridden, requiring assistance with everything. His birthday party was likely his last outing.

We are taking things day by day. I know that now, if anything comes up, we have support through his hospice providers. I fear, though, that he isn’t going to last much longer.

With all that said, Scott had a bunch of photos taken at his party. It’s been amazing.

Scott’s Birthday Bash–A life celebration

We had an amazing turnout! I can’t wait to get pictures and video. Here is a video I took from my phone (if the video previous doesn’t show up, click on Post below). Our gaming friends sang “Sweet Caroline” but instead it was “Sweet Scott Hooper”

I love our gaming family. They are amazing!

Scott did get sick during his party, but otherwise, he did have an enjoyable time. He was so tired, though, and had to leave a bit early. Tonight, he’s been working to get some good bm’s, which they believe has been his primary cause to his nausea the last couple of days.

Post by Mary Jane Hooper.

A new bed

I broke down when they came to do Scott’s paperwork for hospice care. I cried on the way home from work. I cried while talking to the lady with hospice care. That was yesterday.

Today, they brought his new bed. His nurses came to check him out while the bed was brought in and set up. My friends, Tim and Matt, helped to disassemble our king sized bed to make room for Scott’s hospital bed. Tonight I sleep on the couch. Not next to Scott, but alone. It’s going to be a long night.

Scott seems to like his new set up. He can sit up without having to make any effort or using extra pillows. The dogs definitely found their way on the bed to keep him company and warm his legs.

Last Birthday

Scott turned 35 today. He made it. And what does he want to do? Go to Dart Warz. His party is in less than a week and we’ve already got 130 people RSVP’d!

Scott is seeming more and more ‘out of it’. Just not completely there. He is so much more tired and eats way less. He didn’t eat dinner tonight and pretty much slept after Dart Warz and through the night. He’s officially decided to stop and we will start hospice care tomorrow. He threw up three times today. He’s just wasting away. I am so beside myself. This is really happening. Hospice care. Why? I want him to be around. I want him to live. Not die.

Happy 35th Birthday, sweetie. I’m sad that this is your last. That your fate has been sealed and our adventures are coming to a close. The number of kisses and hugs we have left together are numbered and are few. I wish things could be quite different. But they are not. This is what we’ve been dealt. This is the hand we must play. What a crappy hand.

Indian Food & Treatment

Scott checked off another bucket list item today - eat Indian food. He couldn't eat much mainly because he's been getting sick since starting treatment. But he loved the food he did eat.

So, Scott started Avastin this week. He goes back in two weeks for another treatment. So far, he is has gotten sick twice, once on the way home from treatment and once this morning. He says he's willing to do another treatment but if we can't control the symptoms better he may consider stopping it. We also noticed that his left eye is dilated and he can’t control it as well. Likely because of pressure in the brain.

Otherwise, he still very tired and gets an occasional headache. He was very excited today since we went out to eat and he finally got to eat some Indian food.

 

 

Party date set, another “Scott”luck, and Jurassic Quest!

We have an official date for Scott’s birthday party! January 25th at Back East Bar & Grill in Monument, Colorado! We went to the venue to check it out and they treated us to dinner. Scott and I really liked how laid back it was and we are excited to have his party there.

On Friday, we went to see Scott's oncologist. After talking with her and the pharmacist earlier this week, Scott has decided to try one of the treatment options. He is going to start taking Avastin as of tomorrow. He will go in for about 60-90 minutes every two weeks. Avastin is classified as a chemotherapy drug but it works in a much different way than traditional chemo drugs. Instead of attacking rapidly growing cells, this drug focuses on the vascular system, specifically blood vessels. While there are possible side effects, the overall crumminess of traditional chemo won't be as prevalent with this drug. His oncologist is not sure if this treatment will work, as Scott's case is very unusual. But she says it is worth a shot and, if successful, it would provide Scott with more time. He decided to give it a try and if he experiences any bad side effects that he feels he cannot handle, he will cease treatment then.

Yesterday, our friend’s organized another ‘Scott’luck. We hung out, ate some yummy food, played some board games, and just hung out. Scott decided to take some mmj while he was there and started to pass out on their couch. My friends had to help me bring him home because he could barely stay awake and keep himself upright. Thank goodness they helped me get him in the car and get him in the house when we got home. I wouldn’t have been able to do it without them. Speaking of amazing friends, I forgot to share this. At New Year’s Eve, we did our gift exchange. It is a Secret Santa gift exchange involving board games. However, when everything was all done, they all said they had a surprise for us. Our own Crokinole board – homemade, too! They all signed the back, too! Here, Melayna is trying it out.

Overall, Scott isn't doing too bad. He's definitely more sleepy than before and we've been managing his nausea and headaches, which haven't gone away and have gotten a little worse. Besides prescription drugs, Scott has been using mmj to help with his symptoms. We are still trying to figure out appropriate amounts, but so far the effects have been positive. The other symptom that I've noticed becoming more frequent is memory issues. He has been much more forgetful as of late. Hopefully, it doesn't get too much worse than it is.

Today we went to Jurassic Quest. Scott napped as soon as we got home. But we all enjoyed our time hanging out at the event center. I think it was a bit overpriced, but the kids had a fun time. Lots of big dinosaur models, activities, bouncy houses, and such. It was a good time and we got to spend it with our friends, too.

Keeping busy

Scott’s latest news has weighed heavily on my mind. We are still trying to do things, check things off his list. Just spend time as a family. Despite his symptoms progressing, more fatigue, more nausea. We got some options from his oncologist and most aren’t looking too good. He could do chemo. He technically only did one treatment back in October. Then he did radiation and when he was supposed to do chemo, his counts were too low for a few weeks. Then his symptoms progressed and he couldn’t do chemo. So much time has passed. There are two other options we will learn more about later.

But Scott doesn’t want to do it. He really doesn’t want to continue to get sick. He can’t have another operation – the tumors aren’t operable. Nothing can be done to eradicate the cancer. The doctors can’t make any promises that the treatments will even work. If they do, they aren’t even sure how much time he could gain from it.

Scott sets small goals for himself. Right now, he just wants to make it to his 35th birthday. That is all. Beyond that, maybe Valentine’s Day.

We went to see Mockingjay with the girls, went shopping at Kohl’s, and went to Painting with a Twist as a family. We spent time with some friends who are in town, playing Magic: The Gathering and Crokinole. We evening went out to eat with them.

 

I am now in the planning stages of a big birthday bash for Scott. I’m excited about putting on the biggest, baddest birthday party he’s ever had!

Family Picture & Another Grim Update

On Hayley’s birthday, we met with my friend, Coleen, at the Broadmoor and had a family photo session. We did a few holiday ones and a few neutral ones. Melayna was a pain in the butt nearly the entire time, but we still ended up with a few good shots. Coleen was so patient and I love how talented she is. Her website is here and if you’re in Colorado, please consider her for your photography needs: http://www.tenaciousphoto.com/ (If you check out her portraits section, there is a cake smashing picture with an infant in a pink cloth diaper. That’s Melayna on her first birthday!)

We want to wish everyone a Merry Christmas and a Happy New Year. We don’t know how much time Scott will have and this session was likely our last family photo together.

So, yesterday, we received another update on Scott. First off, he’s been throwing up nearly everyday. I last posted that he threw up a bunch the day before the football game and then the day of the game. Well, he three up before chemo. So instead of chemo, they opted to hydrate him and administer zofran and decadron. Scott also hasn’t been eating as much as he used to, just saying he isn’t all that hungry. I had reported over the weekend to Scott’s oncologist about the new symptoms and she ordered him an MRI. Scott did his MRI yesterday and it took 3 hours! He got anxious about halfway through and they asked me to sit in the MRI room with him. I rubbed his leg and foot while he was getting scanned. Even with earplugs, the machine was really loud.

Well, last night we got a call from his oncologist. She called pretty late, too. There are more tumors that have grown in his brain. Two new tumors. She needs to talk with her colleagues to see if there are other options available. But it isn’t good. His doctor thanked me for voicing my concerns and being so astute with my observations. I really just hate that my gut feeling was right. Scott is just beside himself. This completely sucks. He asked me to lay with him for a bit. We cried together, something we’ve done many times before. I really don’t know how much more I can take. Our adventures might be coming to a close much sooner than we’d like.

I started a cancer album a while back. There are a few images I captured since starting it.

 

Time to say Happy New Year! We left our friends party early because Scott was getting tired. We’re going to toast with some sparkling cider and then call it a night.

Happy New Year from the Hooper's!