Some Questions and Answers

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.

Are you still drinking those shakes?

After losing weight they’ve been a great way to continue to get protein as I focused more on my active lifestyle and overall fitness. So yes I’m still utilizing the shakes daily for good nutrition and continuing to manage my weight with good diet. I often make a morning shake that includes spinach or kale, ice, a couple of pieces of fruit and a banana. I vary the ingredients a bit for variety. During the day I often have a salad for lunch with various veggies, nuts and veggies for snacks, and then a sensible dinner focused on portion sizes for overall calorie control. I’ve maintained my weight loss now for an additional 7 months since the initial challenge.

How are you able to workout so much? 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.

How’s your family handling this?

They are troopers. Really they are super supportive and allow me to having my bad days with the good ones filling in the gaps when they appear. Heather is super busy with student teaching, so daily schedules were already going to be hectic this year, and they definitely have been. We’re managing though and grateful to some neighbors that have helped with some rides for kids when we just can’t be in enough places at once!

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 optimism

And 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!