My first 14er

Today I hiked up my first (hopefully of many) 14er. I have been battling this cough for over two weeks now and it is still sticking around. I was not sure if I could even do this today, but I took it slow. Real slow (as in 5 hours to reach the top, when it can be done in 3). As my head began to hurt more and more, my lungs screamed for more oxygen, my heart racing, and as I felt more and more lightheaded with each step I took, I really wanted to turn around and call it quits. But one thought in my mind kept me going...I need to bring Scott to the top. While we have plans to eventually take most of Scott's remains to the beach in California, I felt compelled to bring some of him with me on this hike. I wept upon arriving to the summit. I cried as I placed his ashes inside a heart made out of stones. My grief became very apparent on that summit today. I wish he could have been here to hike with me on what would have been his first 14er also. I cried thinking about the kids and how they are at a camp for grieving kids, a camp they should not have to need. I pushed myself today because of my grief. I did it for him. Thank you, Timothy, for being there today, being patient with me as I slowly ascended the peak, for allowing me to breakdown on a mountain top, and for also bringing Scott to Torreys Peak since I was too exhausted to climb that peak.

This quote found on One Fit Widow’s Facebook page perfectly describes how I felt:

The thing about grief that a lot of people don't understand is that you can be going about your day, feeling perfectly fine, and uncover a memory, hear a song, or simply stumble upon a photo - and you are ripped back - if even for a moment.

Grief is part of the tapestry that makes up who you are. It's deep, it's lasting, and it's painful. It's also enlightening, powerful, and hauntingly beautiful.

Those who grieve are changed.

Life never looks the same. Often the grieving make the choice to live a better life. Grief makes you aware at a deeper level. Grief makes you wiser in a way nothing else can.

Six Months

Where do I start? I can't count how many times I broke down. My kickboxing friends allowed me to mourn as the reality of today sunk it.

Today hit me hard. Six months has gone by since we said goodbye to Scott. Not a day goes by that I don't think of him. I have found, though, that my emotions have really run high over the last month. At times, I find myself angry and other times I am just a mess. I have, however, accomplished much since he passed away. The kids and I have done quite a bit along the way. I can say, without a doubt, that we have had many happy memories. This grief journey, though, has been difficult. It wasn't until this last month that I realized how difficult it really is. New challenges have greeted me, only to be met with a sense of loneliness and anger.

I recently started group counseling for people who are grieving. While it has only been a couple of weeks, it is comforting to know I am not completely alone and that others share the same fears and pain as me. Also, the children have all been signed up for a grief camp this month. A three day weekend spent up in the mountains with other kids who are also grieving. An experience, I hope, will help them understand that they are not alone and that they can express their grief.

I, unfortunately, have not allowed myself to really grieve openly, especially in front of my kids. Something I need to change. Something they need to see me do, so they, too, know it is okay to grieve. I am hopefully making positive changes in our lives that will allow me and the children to start to heal. So that we can all begin to move forward, forever changed by the impact Scott had on our lives.

This Saturday, I will finally get to go on the bike ride I set out to do over a year ago. Scott will not be waiting for me at the finish line like he had intended, but he will be with me. I am nervous, but very excited to do this and am so thankful I will have Ginia by my side. This will be a testament to how far I've come in my journey to become a healthier, fitter person and to be the example my children need me to be.

I have a few days left to raise money for the B Strong Ride. Please check out my page if you have a moment:https://fundraising.active.com/fundraiser/MaryHooper

First Family Camping Trip

For the holiday weekend, we opted to go camping with some friends. I hadn’t been camping since I was a kid and my kids have never been camping. To top that off, we have our new dog, Freddy. The weekend was filled with motor bike rides, s’mores, campfires, good company, and some rain!
It was definitely nice to get away, slow down, reconnect with nature, and just breathe.  Scott would have enjoyed it very much, I’m sure. It makes me sad that he didn’t get to camp with the kids. Life was always just too busy. While it is still busy, we found the time to fit it in!

All done

Got the rest of my tattoo finished today. It definitely hurt a bunch today since the work done was up on my collar bone. I plan to get better pictures once it is all healed up. This whole piece is dedicated to my mom, who passed away nine years ago, and my husband, who passed away earlier this year. Scott was really fond of the movie Lilo and Stitch and so I have the Ohana phrase and Stitch for him. For my mom, I chose a hibiscus flower because I have an old picture of her in the botanical gardens in Okinawa, Japan where she has a flower above her ear. To me, it resembles a hibiscus. The words 'Mahal kita' mean 'I love you' in Tagalog, my mother's native language. Both sides were tied together so beautifully and it is my hope to bring them together across my back sometime in the future.

Denver Comic Con

Yesterday, we went to Denver Comic Con. A bucket list item of Scott's. I didn't get to go for the whole weekend, but I am glad I didn't. I had six kids in tow and it was a chore to watch them all and keep track of them. I did have help from friends, which I am grateful for. We got to see a lot of cool, geeky things and I got a few autographs. Overall, it was a fun experience. I think I want to try going without kids, though, next year. I'd love to sit in on some of the panels and slow down to enjoy the convention.

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

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.

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!

Christmas & Another Bucket List Item

Christmas was abundant and joyful. It was productive for me (I spent hours cleaning). The kids all had fun. Scott slept through most of Christmas day. In fact, he slept through all the kids making noise and through his 3:00pm medication alarm (I heard it going off while I was downstairs cleaning). We had yummy breakfast and enjoyed the day with my dad, Gloria, and Kate. Another weird thing happened on Christmas, too. Scott seemed to have forgotten who he got his Monopoly game from (Melayna picked it out and I even took a picture of the two of them together after he opened it). Then not too long after he asked me who gave him the game, he asked me again. I’m a little concerned over this, but I’ll check with his doctor next week.

     

 

This weekend we went to Build-A-Bear. Scott picked out a bear for each kid and recorded his voice saying “I love you” to each of the kids. Each of them walked away with a bear just for them with daddy’s voice. Something they’ll be able to keep long after he’s gone.

Today, Scott went to a Raiders & Broncos game with my dad. Jack, our friend who drove us in a limo to Transiberian Orchestra, drove Scott and my dad to the game. They had club level tickets and pre-game on field passes! While I wish I could have gone with him, I was excited he got to go with my dad. Scott had an amazing time despite getting sick this morning. He even got a football from one of the Raiders coaches. Too bad he couldn’t get autographs.

 

The only downside to this past weekend, was Scott’s fatigue continued and he was also getting sick and throwing up. I messaged his doctor with all the new symptoms and she opted to have him get an MRI done this week. I’m scared that things might be looking to go downhill. I have this weird feeling. We won’t know until later this week, though.