My weekly posts have now become a monthly post! We finished up March with Robyn's wax museum where she posed as Florence Nightingale thanks to a talented grandma who figured out an apron and hot ensemble and a gracious neighbor who had the perfect lantern when Mom's lantern was not authentic enough.
Women's broadcast with the cousins plus a friend followed by visiting, cheese sandwiches and cupcakes.
Then we took Taylor to respite, Allison to a friend (for half the time) and Robyn to cousins and we were off for Spencer's senior trip. After a long plane ride to Florida, we each chose how to best recover. Spencer and Jeremy hit the gym and I lay by the pool and napped. Then it was off to Medieval Times to live out Spencer's dream of seeing jousting and sword fighting and eating with our fingers. We waved our pennants, wore our crowns and cheered for the yellow knight.
The next day we went to Port Canaveral to board our cruise ship.
We played, ate and ate and relaxed a ton. We haven't really had a lot of down time since everything hit after Christmas so it was good to just decompress and be for a bit.
Jeremy said he lost track of how many photos of me looked like this:
I think I took a nap almost every day of our vacation plus slept a good 8 hours each night. But my favorite nap of all was when Jeremy and I found a hammock one day on our last afternoon. I could have laid there forever.
We spent one day at sea, one day at Little Cay (a private island owned by Carribean), Nauseau and Freeport all in the Bahamas. We snorkeled, and swam a bunch and walked all over. I couldn't get over how warm and blue the ocean was and how soft and clear the sand was.
We visted a zoo, kayaked through Mangroves and swam as much as we could. Watched outdoor movies and went to shows. And ate - I couldn't believe that Spencer could eat so much food. It was a little unreal. The taco stand and french fry places were much loved.
Then it was back home to girls who had been shuttled to play practice all week by their amazing aunt Kelly and Taylor who did great in respite. It was an awesome vacation. A few hiccups like Spencer being up for 2 hours one night throwing up - I blame it on all the food - and felt much too short. And Spencer learned what it means when I suggest we walk around and look at the island a bit. Next time he is packing hiking shoes.
Back to real life of school and work. Morning after we get back, Spencer comes downstairs beaming, "I lost 2 pounds!", Jeremy "I gained 10!" which of course he has since worked off. I need some of his will power.
All college papers and observations are done for me. One more week of teaching and I am official. I have started meeting with my new school and getting stuff rolling there. Jeremy had to close down the studio so currently our garage is full of lots of stuff till we can find a way to store it or he finds a new place. Spencer and Allison both got their classes all registered for next year. Allison got a full scholarship to a writing camp at SUU over which she is very excited. And all the other odds and ends. Jeremy has had lots of city council meetings and photo stuff lately. And girls are in the thick of play practices. But of course we get all the fun stuff too like Easter with cousins. Grateful that our kids still like doing all the kid stuff for a day. And they let me snitch some of the mini-cadburry eggs!
Jeremy had his company's Big Outdoor Expo last weekend. Lots of work leading up to it with design and advertising. Allison worked both days for him taking tickets and Spencer worked all day Saturday before leaving to work at Chubby's (I figured out he worked 15 hours straight that day - it was awesome). Robyn, Taylor and I just got to go enjoy all the booths. In fact Robyn liked it so much she had me take her and her friend back again in the afternoon.
The girls had their piano recital. Both were disappointed on how they did but I thought they did wonderfully. Allison had a piano festival she competed in as well. Allison is starting to do some really tough pieces which makes for lots of practicing. Allison also had her big choir concert and she and Robyn have started the busy season for their play. So they are staying busy and music is filling our house.
Robyn had battle of the books at school this week where she competed with teams to decide who knew the most trivia for the books their grade has read this year. We have gone in the span of 2 weeks from Robyn reading books by the fireplace with hot chocolate and dunkers:
to her having a group of friends over for a spring is here party of painting pots, planting flowers and making muddy buddies.
Odds and ends of the weeks are Taylor breaking his Daffos and the visits needed to fix them, Jeremy's studio being sold so looking for a place to move to and Jeremy having some photo gigs.
Biggest news was that I got a job for next year. I have interviewed at a couple of schools and all of them I could see working at. But the one school I really, really wanted offered me a job at a local Jr High and I accepted. I knew since it was mentioned as a possibility in January that that school just felt and sounded right. So that is what I have been praying and hoping for. Lots of really nice people and some little miracles and it all came together for me. Big stress of my shoulders. I have two more weeks to finish up all my school work and get it sent in for review, one more graded observation and then I just get to enjoy teaching for a few more weeks. So close.
I notice that my posts are getting fewer and fewer. Mostly because the days seem to just blur together. I was talking to a neighbor and she was saying that life for her is work, kids, church and sleep but if that's all her daily life consists of for the rest of her life she would be content. It was a good reminder for me to remember how blessed I am and to enjoy this new routine of our life. It doesn't make for very exciting blog entries but it makes for a happy life.
School is going well. The teaching part is just a lot of fun. I even enjoy the prep part, I just never have enough time it seems like. Most of my week nights and weekends are spent preparing lessons and doing assignments. I got to go up to Logan last weekend with a fellow cohort member who lives in Payson. We drove up Sunday night and stayed in the hotel on campus because we had a class at 9 am and were worried about snow. So we were all dressed and headed to breakfast at 8 am when we got the call that because the canyon was closed to all but 4 wheel drives with chains they had cancelled the day. So we spent the morning meeting with our professor, waiting for the canyon to clear and then came home. I beat kids home from school which made us all happy. Right now I am in the middle of applying to schools to teach and I am really appreciating the efforts of many friends to help me get a good position at a near by school.
We have had a few fun things these last weeks. I took Spencer, Allison and Robyn one night to see Peter and the Starcatchers at Hale Theater. Allison loved those books as a child but I had never read them so didn't know what to expect. It was an awesome play and very different than those we had seen before.
One Saturday Robyn, her friend Jill and I took Jasper up to the Humane Society to get his shots and worm medication as well as pet all the animals there. I wish it were closer because our kids would live there on weekends if possible, especially Robyn. Robyn has been enjoying doing Student Council at school as they help organize the Battle of the Books. They finished reading a book about a book scavenger hunt so she quickly printed out scavenger hunt instruction and had to run to a park to hide it. She has been enjoying her drawing class every week especially learning how to use pastels.
Saturday night with Spencer at work the rest of us got to go enjoy a Vocal Point concert while Jeremy took photos. Their version of Nearer My God to Thee just brings me to tears every time. Throw in some milk shakes and fries on the way home and Dad's night out was a huge success with the girls.
Allison has been busy practicing for her piano recital and festival this coming weekend, doing choir, practicing for the play and doing tons of homework. She and Jeremy both caught a cold which left Jeremy sniffling and coughing for two weeks but made Allison pretty wimpy and miserable for a few days. Luckily she has a friend who is willing to spend a weekend watching a princess movie marathon with her. I did get to go with her and the YW to watch a BYU volleyball game along with Spencer and Jeremy. Robyn, our anti-volleyball member of the family babysat Taylor for us instead.
On President's Day the kids and I headed up to SLC to see the new Family History museum. Unfortunately it was closed so Allison and Kaori hit up the mall and the rest of us did a tour of the conference center. Spencer is still a little bitter about it.
Jeremy and I were able to go one night to the Police recognition dinner. It amazes me how much the police in our community do in return for so little. He has enjoyed being a part of the Honorary Colonels and getting involved in the community.
You know those weeks. The ones where day after day just seems to pile on from the unpleasantness of the previous day. When there just doesn’t seem to be a light at the end of the tunnel, at least that you an see. Where you just feel blah, then awful, then downright terrible. You know what I’m talking about, because we’ve all had them.
So it’s really more of a question than any particular answer I might have to offer. How do YOU handle it?
This week has been a tough one physically. Just as I think I’m starting to get a handle on the whole crappy sleep thing, all that sleep depravation combined with my lower immune system left me open to catching a cold. Nothing special, just your garden variety cold I think. But add that on top of everything else already in play and it makes each day that much harder. Each morning a little more difficult to get out of bed early and keep up the healthy fight. Each night a little harder to sleep because, you know, that coughing thing does make sleeping a bit tougher as well.
By Wednesday I was dragging along and my gut decided to chime in. “Hey, remember me?” The sharpest and most consistent pain I’ve felt since being diagnosed. As in doubled over ouch.
I know, ladies out there are rolling their eyes saying we go through this pretty often too you know. Lately I’m feeling a lot more sympathy for you.
For whatever reason it was a doozy, and I have no big change in my diet or activity I can pinpoint as the cause. Just one of those things I’m dealing with as part of the challenge. But thankfully I was able to take some sleep assistance, crawl into bed and by morning feeling ok again. Back on the bike and enjoying some fitness driven endorphins. Apologies to those on bikes around me having to endure the periodic hacking into my elbow. I do try to avoid spreading the unwanted bugs.
Friday I got some tough news on some things work related, which only adds to the stress. Crap. That’s been all too frequent in the last few years. Who knows how that will turn out. Don’t need that right now, but what can you do? Just work harder and try to contribute to the solution.
Mostly that’s been my week. Up each day putting forward some effort to be healthy as I can, be productive, and get to bed each night early enough to get a full night of sleep if my body will cooperate. I can definitely feel the difference when I get a more solid set of sleep hours vs when the night is more interrupted. But then can’t we all?
This too shall passThat’s how I typically make it through any challenge in life. Realizing there is an end in sight, or a finish line I can work toward. That’s how I hit the rest button on my weight and fitness, putting forward a plan with a finite goal in mind. I can do anything for a specific period of time. Cut the calories and tough it through the hunger. Check. Cycle a little harder knowing there is only so many more minutes left in the class? I got this. Those kind of challenges are easy to wrap my mind around.
These bigger ones take a bit more thought and finding a long term view.
The outcome in this case is uncertain. I don’t control all the factors involved. We have our goals, hopes and expectations, but some of this we have to just trust that whatever happens will happen. I hope some day to be able to say that changing my health in a significant way this last year saved my life. Not just figuratively, but literally.
So I still believe this too shall pass, but cancer really is one of those things that never does fully pass. It’s with you as a challenge for the rest of your life. There’s gotta be some other life lesson to be found there, right?
To those ladies that stopped by with a some gift cards and a hug for my wife. To those neighbors who know a gift card that lets me take the kids for a some solo time and a treat means more than anything. To those near life long friends of my parents that send a note with some crafty origami of a dollar bill and words of encouragement. To those friends that drag my butt to the gym or yoga to make sure I don’t give in on a particularly groggy morning. To those…the list goes on, and you all know who you are. Thank you. I’m finding this journey to be a team effort, and your efforts sure have made a difference.
So how do I handle a rough week?After experiencing my week, I happened online to see a friend lament at his bad week. And it was a bad one from what was shared. Reminds me that no matter how bad things seem to get, there’s always someone else having a worse time at it. Sometimes days, weeks or even longer periods of time can pretty much suck. There’s no two ways about it. We can have the best attitude about it all and have the long view in mind, but it’s ok to sometimes admit that at the moment, some things are just not great. Sucky. Crappy. No bueno.
Do what you need to do. Have a good cry. Drive up in the mountains and shout it out to the sky. That’s a particular favorite of mine. But what we do after that is what really matters. Pick yourself up and move forward. This week it was all about getting to the next bit of fitness to fuel with some endorphins & sweat. The photo at the top of this note is my happy to be in some warmer weather little dog dragging me for a mile or so. Good stuff.
So that’s what I’m trying to do. This next day, this next week, this next month. Just look forward to the next upswing and work toward making the next day better. Seems a whole lot better than any alternative.
Over the last couple of months there have been plenty of questions asked about how things are going, and of course how everyone is doing, both about me and my family. I appreciate the interest and concern, and always try to share honestly exactly what’s going on and the latest in what I know about my situation.
I also know that not everyone reads everything I write. I know I probably wouldn’t if I wasn’t the one doing the writing! So I thought it would be good to address some of the most common questions in the update today. If you already know it all, feel free to carry on scrolling through your social feed. Actually, if you know it all please let me know the answers because I’m still figuring some of it out myself!
First, what’s the latest? I had my first visit with my Oncologist this week after starting my treatment. I was having a rough week physically, mostly due to many nights of poor sleep in a row. We talked about my blood draw results, the pain I’ve been feeling, sleep, diet, etc. If nothing else my doc is a good listener. I explained my issues and what I felt were the possible contributing factors, and he pretty much agreed with all my conclusions.
On the pain side, it’s pretty much suck it up buttercup. No, he didn’t use those words. That’s my paraphrasing and applying a bit of my opinion. He agreed that most of my abdominal pain was the tumor pressing agains my gut and organs, and likely much of it is a result of whatever is happening in my digestion mixed with bad sleep. So I’m adjusting some of my diet choices to see if I see benefits and we are trying some sleeping aids to try and get back on track on the sleep side of things. Hopefully overall that will get me more consistently having good days over bad ones in how I feel.
By the end of this week I’m feeling like I’m on the upswing a bit. Though I have a cold, I’ve stilled worked out each day (hard), my weight is back down a bit (yes!), and my gut has felt a bit better with the adjustments in my diet even after just a few days. Baby steps.
Now on to the most frequent questions.
What kind of cancer do you have?My tumor is called a Gastrointenstinal Stromal Tumor, or GIST. It’s a rare form of Sarcoma typically located in peritoneal cavity (the gut) originating from the small intestine or lymph node.
How bad is it?Short answer is it’s pretty bad but hopefully treatable. With some areas being a little undefined without surgery, my doctor has classified me as an upper Stage 3 to lower State 4 cancer. Mostly due to the size of my tumor, which is big. Like really big for it’s type. 20 cm (8 in) on it’s longest measurement and all around my spleen. On the good side it’s a slower growing tumor and isn’t clearly seen in other organs at this point, though that isn’t conclusive.
This shake you're using, did it cause the cancer?Short answer, no the shakes did not in anyway cause my cancer. I know my rapid weight loss and talking about it makes this a real question that has been asked or thought about by many and probably left unasked. The nutritional shakes I’ve been using are called OGX Fenix by a company called Organo. They were simply a way for me to maintain great nutrition despite reducing my calories to lose weight. While the shakes do have a proprietary blend of ingredients, at their base they are a whey protein and other high quality nutrients. They did not create my cancer. In fact, looking at the size of my cancer and it’s low mitosis (growth), it’s likely been there for a very long time before I started losing weight.
Did losing weight so fast cause it?What the whole body transition did do for me was allow for this cancer to be found. I shrunk my core so much smaller than it was before, removing fat and space within my abdominal cavity that the large tumor was pressed against all the other organs causing pain. That led to me finally get into the doctor and the cancer diagnosis. So I’m still thankful for that benefit of getting into the healthier mindset again and getting in shape.
Shouldn’t you be sleeping?Sleep is definitely a top priority for me right now. My issue isn’t falling asleep, I seem to do that just fine because frankly I’m exhausted by the end of the day. The problem is I typically wake up multiple times after a few hours of sleep due to pain or discomfort, then have a hard time getting back to sleep. Eating healthy and being active physically has been the BEST medicine for my overall ability to handle each day. So even on those mornings where I’m groggy from lack of sleep or feeling terrible, I’m forcing myself to get up and stick to my routine. But in order to do this I’m getting up at 5:20am each morning, so therefore going to bed at 9:20pm each evening. So I’m working hard to get in the 8 hours each night, we just need to get it so I get in a quality 8 hours instead of this interrupted garbage I’ve been experiencing recently!
So the fitness is part of my plan of attack, and even on those rough mornings I feel so much better after for having done the effort. Those fitness endorphins are a real thing!
Is the cancer treatment working?At this point we have no idea. Unfortunately the drug I am on is a long process. I wish I knew answers already! What we do know is I’m feeling the side effects, but they are manageable overall. Fatigue, rash, digestive pain and mostly interrupted sleep has made it tough at times. My blood work has reflected numbers that are expectedly lower than normal, but normal for this kind of treatment. The first time the doc will look for measurable results is with a CT scan in a few more months.
Is this chemo? Will you have radiation?The drug I am taking is called Gleevec. It’s not chemo, but it’s kinda like it in a way. Gleevec was developed specifically for this type of cancer and is a growth blocking treatment. It’s had good success overall for this type of cancer, so we are hopeful. Radiation is not effective against this type of cancer.
What if this treatment doesn't work?Good question. I don’t have a lot of info on what’s next. Mostly we are remaining hopeful and optimistic on the current treatment and my healthy efforts. Generally speaking they would look at possible surgery to remove part of the tumor or other more experimental drugs.
Sugar feeds cancer. Are you sugar free?I’m reading about a lot of different dietary treatments for cancer. There really is no one perfect answer, and everyone’s bodies are different. That said, generally a healthy diet is the best treatment you can do on your own. Ever since embarking on losing the weight I’d put on in recent years, I’ve skipped all deserts, sweets in general and processed sugars. So I skip all that anyway. Being truly sugar free is harder than many might think. Fruits have natural sugars. Breads and carbs in general are turned into sugars as they are digested. My shakes have pure cane sugar in them. So no, I am not 100% sugar free, but I am really low in my sugar intake. I’ve recently cut out almost all breads from my daily intake, relegating it to a very periodic indulgence as part of an effort to see what might help in my digestive related pain. I may get even closer to purely sugar free if I choose to try some other dietary approaches I’m researching.
Meat causes cancer. Have you gone vegan?Animal proteins are another hot topic as it relates to cancer. I’m reading more about this (slowly) and have cut way back on any meats. Again I haven’t gone completely vegetarian or vegan yet, but significantly more so than in the past. I enjoy chicken chunks in salad, and boy howdy a great burger is much more enticing to me than any dessert. But for now it’s out of my diet. Sigh.
Have you hear about ________ clinic?Probably the most common suggestion I’ve received next to various diets is out of state or out of country cancer clinics. While they likely do great things, right now my focus is on treatment available to me here at home. I’m doing much in my own diet and fitness efforts combined with the traditional medicine available to me. If those don’t work, perhaps I’ll look closer at other options out there. I really don’t have the financial latitude to try anything like those anyway.
How expensive is your treatment?The drug I’m on costs $10,000/mo retail in the US. That’s craziness. Outlandishly crazy. I’m very fortunate to be insured through my employer, which covers 70% of that prescription cost. I’m sure they are thrilled to have me as a client. I did qualify for manufacturer assistance on the drug, so I’m able to pay only a copay on the prescription. That was a HUGE relief.
There are still plenty of other costs involved. The oncologist is of course a specialist, so the copay there is higher. Regular blood draws, the cost of the biopsy and various scans are high. I have a high deductible and out of pocket insurance plan. Other prescriptions and supplements I am trying have their costs. Then there are the less apparent costs of having to do less freelance work simply because I don’t have the energy and have to sleep more means less income. It all adds up, but overall we’ve been able to handle the expenses.
Have you heard about ketosis?Diets that put your body into ketosis are another area I’m reading and exploring. It’s definitely a bit more extreme in what is required to maintain daily and the discipline. I am not doing it yet, but it’s a possibility to try.
Have your tried essential oils?I have been talking to one friend about what oils might alleviate or help with the various side effects I’m feeling. I’m willing to give most things a try that might improve my sleep, digestion, etc. after I’ve researched them a bit.
Are you able to work?Yes! Fortunately most days I’m feeling well enough to put in a full day at work. Some days are a bit harder and I’m toughing through the discomfort, pain or overall fatigue. Unfortunately I’ve had to pass on some project work where I was failing the clients in how long things were taking to get done. My work has been very helpful and supportive and outside of a few sliding deadlines I’ve been able to keep up on things.
Do you mind being asked about this again and again?I think from my previous post “When the Sympathy Fades” some people got the impression that I didn’t want to talk about the cancer at all. No, I don’t mind at all really. I was mainly wanting to make sure people felt released of any feeling of responsibility to always talk about it. Feel free to ask away. But also feel free to not ask about it. It’s ok. I’m ok. We’re ok.
Do you have other questions?If you have any questions, please feel free to ask them. My goal has been to share this adventure with anyone that is along for the ride. I love your support and know that it’s only through knowledge and awareness that others can benefit from my challenge. Include your questions below or message me if you’d prefer. I may share further answers in a video or other means if I have enough questions asked.
Your weekly dose of optimismAnd now for your dose of optimism. Despite a harder week, I’m working through the physical difficulties of pain and sleep and starting to feel a swing to the better side. I read a quote this week “Treat yourself as if you were someone you are responsible for helping.” What a good way to look at things, especially when it comes to making hard adjustments that should prove beneficial but frankly are not what you want in the here and now! We can all do a little better in helping ourselves as we would help someone else we care about.
That’s all for now folks!
I finally let Allison drive me a few times. She is always eager to hop behind the wheel. Jeremy takes it much more in stride letting her drive everywhere. This week Allison finished up her online Financial Literacy class and did a very relieved happy dance. She has not enjoyed that class at all. I on the other hand thought it was full of actual useful information! She and I got to go see LaLa Land together and I thought how grateful I was to have a daughter who is willing and wanting to share such things with me. She loved all the tap numbers and is busy practicing away for her play in the garage tapping away, wishing we had heat out there. We had New Beginnings this week and she helped do one of the rotations. I was just beaming with happiness in her ability to stand up and bear her testimony. She did say on the first rotation our bishop was in the room, on the second it was a member of the Stake Presidency and she said in the third with her luck the prophet was going to walk in.
For my birthday we all drove up to Cheesecake Factory and everyone (but Jeremy) picked out their own slice. In case you think I am mean, Taylor and I split one, he really did eat half of it! Birthday was awesome as I had so many family and friends think of me.
Spencer and Jeremy did a late night when Jeremy was given tickets to see BYU basketball vs Gonzaga. They had a great time marveling at how tall and how big a beard one player could wear. Spencer had his first date Saturday night taking an awesome girl, Kaley to Sweethearts Dance with a group of friends. They rented an archery range for the day date followed by Sodalicious. Then at night they did photos with Jeremy, dinner at Macaroni Grill, dance with lots of mosh pitting (Spencer swears his date wanted to), and JCW's for shakes. He had a great time and has been sleeping all afternoon to make up for it.
Spencer started attending the archery team at school and has discovered more of a social life. He learned he could leave school with friends to go get pizza for lunch. I asked him what happened to the lunch he brought and he replied that it was long gone by lunch time. He lives by Hobbit rules - first lunch and second lunch whenever possible. Met Spencer's doctor this week and he is told just to keep up meds and he is doing great.
We had the Hall's over for Superbowl Sunday. Ate way too many wings thanks to Jason and had a great time hanging out. Watching football is incidental for me but talking, visiting and eating yummy stuff is wonderful.
This Sunday we had Stake Conference. As part of it our Stake President and Elder Worthen (BYU Pres) came to visit us. They were very kind and loving and just wanted to make sure we felt of their love for us. I always feel like deer in the headlights a bit at visits like those. Never quite know what to say. Besides which its either true, or it isn't. And if the gospel is true than we just trust the path we are on because we know the destination, put our heads down and get on with it - with as much joy as possible.
Student teaching is going well. 11 weeks left, 5 down. I had my first observation this week which went pretty well although I have a long list of things to improve on! I also had parent teacher conferences which made for a very, very long day. No one does well with 12 hour work days, no one. I think school should start late the next day and all teachers should be given brownie sundaes. On Friday I got to take my class to Olive Garden for a 3 hour field trip. We have been learning and practicing restaurant skills for a month now and it was fun to put them to use. One boy ate I swear 10 breadsticks and a pizza.
With parent teacher conferences I only got to go to Robyn's and Tayor's. Both are doing well. Spencer and Allison I just have to trust their grades posted online are telling the true story and emailing the teachers.
Jeremy met with the oncologist this week. Blood test numbers are low but normal for being on his medication. Won't look at a CT scan till summer. For now just suck it up, stick it out and wait. Can't do anything for the pain as its all pressure related so he is trying hard to eat small meals, mostly plants to keep his digestive system as empty as possible so there is less pressure on the tumor. Some days are great, some days not so much. They did prescribe some sleep medication which he can use a few times a week and I am hoping getting some sleep in will help the pain. I know I feel much better when he sleeps better at night.