It’s been quite a while since I blogged. Fortunately it’s been because I’m busy again with living life. I’m going on my third week back to work and it’s starting to feel a bit more normal. Also, Heather has a job now too. Ever since the twins were born, Heather has worked hard raising our kids, but hasn’t had a 9-5 type job, so now I have more responsibilities with the kids – including bringing them to school and picking them up on some days, and being with them for most of the weekend. Like I said. Busy. The mom life is a lot of work! I’m glad I’m a dad!
Anyway. I do have quite a bit on my mind relating to cancer. This might come together like a giant ramble, so prepare yourselves.
First thing first. The title of this blog is something that has continually crossed my mind since surgery. “If I Live To Be One-Hundred.” I think Winnie the Pooh said this at some point. I have no idea exactly if or when I’d ever write something about my cancer experience, but that’s probably the title I’d use. I actually recently thought about a children’s book about cancer with this title. There’s also some bigger ideas I’m kicking around in my head that seem too big to try to accomplish on my own. I have much more kicking around to do.
I’m still in the recovery phase from surgery, but things are always getting better. Instead of having good days and bad days, I now just have bad moments during regular good days, which is amazingly refreshing. Take today for instance. I was walking into work down the Detroit River (I try to walk down the riverwalk in the morning if I have the time) and everything was perfect until I had a terrible cramp in my stomach/side/groin. It lasted for about 30 seconds and then it was gone. I have no idea what it was, but of course the mind instantly goes to the “cancer is back” thoughts.
I push the thought aside. I breathe the fresh air. I look out at the river.
That happens more than I like to admit these days. Ignoring cancer is part of my routine now. I was reliving the 90’s at the Our Lady Peace concert at Arts Beats and Eats a few weeks ago and I almost left because of the cigarette smoke. Granted it was outside, but it was still overwhelming at times. I was also sitting by a campfire a few times this summer and thought, “I shouldn’t be inhaling all this smoke.” I was at my brother’s house for a BBQ and didn’t want to eat any meat off the grill.
It seems a little over the top, but all those things are carcinogenic. Inhaling any kind of smoke and eating grilled meat cause cancer. It absolutely sucks to learn so much about cancer. I walk around with this heightened state of fear at so many things around me.
I push the thought aside. I breathe the fresh air. I look out at the river.
Being back to work has been great. The best part is being back with the old crew of friends and the new guys they tried to replace me with. They needed four to fill my enormously arrogant shoes. Hah! I kid. They’re actually all smarter than me. It’s lucky I still have a desk down there. Actually it’s not luck… It’s the generosity and kindness of my GM and Entrega managers. I walk into work every day feeling this amazing feeling of undeserved gratitude. The next best part is that my brain is still functioning and remembers how to write code and use a computer. I’m back to making rookie mistakes here and there, but at least I’m not bringing down the intranet like I used to do.
I think the hardest part of where I am right now is answering questions people have about cancer.
“So are you all better now?”
“Did natural treatments work?”
“Are you still stage 4?”
“Are you going back to Chicago to do Radiation or Chemo now? Are you still going to do treatment?”
“Is what you’re doing with your diet and supplements what helped cure you?”
“Can your cancer come back or did you beat it?”
“Are you worried about it coming back?”
Yes, I am better. Yes, natural treatments worked. Yes, I am still stage 4. Yes, I am going back to Chicago to hopefully resume the same non-toxic treatments I was doing beforehand. Yes, diet and supplements helped, but I’m not “cured”.
Yes, my cancer can come back.
No, I’m not worried.
It’s just so complicated. There are so many factors involved that brought me from where I was one year ago to where I am today. It’s so hard to explain to people that just want to hear I’m back to normal. There just is no normal anymore. I have absolutely no problem talking about it to anyone who asks, it’s just such a long, complicated answer that I sometimes don’t do the best job explaining.
I’m better because all the visible tumors have been removed from my body. The natural treatments, the IV Vitamin C, the conventional protein inhibitor, the diet changes, the supplements, and surgery – they all worked together to get me to where I am today.
But there’s no “cure” for stage 4 cancer. You can live in remission though. You can also live with visible tumors. Unfortunately for me, my cancer marker blood test NEVER shows cancer. It is always perfectly normal. The only way I know if I have a cancerous tumor inside me is through the use of scans (which missed the golf ball by my gall bladder) or surgery. I’m currently in a very unusual part of my cancer journey.
I have absolutely no idea what’s going on inside of me. I experience intense pain at times, but that’s normal after major intestinal surgery. Hiccups, yawning and sneezing are all still excruciating experiences. I wake up in the middle of the night with leg pain where only exercising and stretching them seem to lessen the pain enough for me to go back to sleep. Wall sits for 20-30 seconds help the most. It’s just all part of my routine now.
Every time any of these bad moments happen, I have to consciously ignore the cancer thoughts and move forward. I have my moments when I talk to Heather about how I’m really feeling during those times, and it was refreshing to hear that she is going through the same thing in her own way. We both have to force ourselves to ignore the fear. It’s hard but it’s necessary to move forward.
I’m doing the best I can with the diet and supplements and natural treatments. I travel back to Chicago on September 25th to see what they recommend I do as far as treatment is concerned. Actually, I know what they’ll recommend already because they scheduled me for a week long trip with a chemo pump when I called to make the 2-day trip. I explained to them that I have nothing planned with the oncologist except for a consult, so they switched me back to a 2-day trip. The problem is that the oncologist controls the natural treatments. If he recommends a chemo pump (which he will) and if I refuse (which I will), he legally can’t let me do the natural treatments they offer at CTCA. I could do the protein inhibitor, but it wasn’t 100% effective at shrinking all my tumors. He may tell me that he doesn’t think that will be a benefit to me.
Basically, my time in Chicago could be drawing to a close.
And I’m frustrated. It’ll mean I’ll have to start natural treatments at home, which we all know won’t be covered by insurance. I’ll be back to the days before CTCA where we did as much as we could every month by ourselves to help heal my cancer.
There was study I read recently that around 75% of stage 4 cancer patients are never told that chemo won’t cure them. Let me say that again. 75% of stage 4 cancer patients are NEVER told they are palliative care! You are either curative or palliative when it comes to your cancer diagnosis. Guess what? Before I went to CTCA, no one told me that chemo wouldn’t cure me except my colorectal surgeon Dr. Priest. I was so angry at him when he told me “you’ll never beat it, but you can live a long time with it”. Come to find out, he said the right thing to me, even though it wasn’t what I wanted to hear. I always come back to this Washington Post article whenever someone asks me why I’m not doing chemo for my terminal stage 4 cancer.
Because it doesn’t help.
“Then, the specifics emerged. One of Biden’s first announcements was that the Food and Drug Administration would speed the approval of promising drug combinations. But thinking you will substantively improve cancer treatment by altering how it is regulated is like thinking you can run a faster mile by buying a new stopwatch. The efficacy of cancer drugs is beyond the FDA’s control, and no one doubts it would approve transformative drugs or drug combinations if they appeared. In fact, the FDA has already shown that it is willing to approve nearly any cancer drug that comes before it. A study of 71 drugs approved for solid tumors from 2002 through 2014 showed that the median improvement in survival times was just 2.1 months. If we are going to make real progress against cancer, we must acknowledge that such marginal gains — achieved at the price of substantial cost and toxicity — are just not good enough. We must also acknowledge that no matter what we do with the FDA, it can’t produce better medicines.”
2.1 months. All the money in the world. All the promising new drugs at their fingertips. And they buy me 2.1 more months with my wife and kids. And let’s not factor in how sick I’d be going down the list of drugs that can’t cure me for a mere 2.1 months. This is proof enough for me that either cancer is an unsolvable disease, or they aren’t trying hard enough to find the cure.
But no, I’m not worried.
I’m not scared of cancer. I respect it. It may come back. It may never come back. I don’t really have a choice in the matter other than what I can do every day to help my body be in a better position to heal from abnormal cells.
Recently there were a few people that have been diagnosed with cancer that I know. Some of them are family members, others are friends of friends. They’re asking for my advice on what they should do and there’s something I wrote a while ago in a Facebook group that is the only thing I know to tell people when they are diagnosed with cancer.
To the newly diagnosed:
I think the hardest part about dealing with cancer in general is the overload of information for scared, desperate people. Some say Cancer is a metabolic disease. Others say it is Candida. Parasites. An acidic body. Someone just recently said the only cure is through nanotechnology and lasers.
Stop it. Just stop. You want to know what Cancer is?
It’s a wake up call. A diagnosis of cancer is devastating. And that’s a human reaction. I went into a shell when I was diagnosed and all that consumed me all day and all night was fear and what people would say at my funeral. But what I’ve learned crawling out of that despair is simple…
You either get bitter or you get better.
I pulled myself up off the ground. I accepted that cancer is a very real and serious issue that you need to heal on so many levels. Mentally, physically, spiritually. I strongly believe that there are common things that help all and there are certain things that help only a few.
Our bodies are special. Fascinating. Amazing. The more I learn the more I see how entirely perfectly complicated we are.
From radically changing your diet, to taking control of your health, to following your intuition, using herbs and supplements, releasing suppressed emotions, increasing positive emotions, embracing social support, deepening your spiritual connection and having a strong reason for living. All these thing contribute to the healing process.
The first thing you should do if you’re diagnosed is let your emotions out. Embrace the uncertainty. Embrace the fear. Embrace the very real chance that no matter what you do, whether it be conventional, natural or a combination of both, embrace the fact that you might not beat it. But in that very same breath, embrace the fact that you just might succeed.
You can do a thousand treatments daily and lose, while someone else does none of those same things and wins. I’ve learned that if we face that terrible, thou who shall not be named, elephant in the room known as death, we can put ourselves in a much better position to succeed.
We’re all terminal. Even those without Cancer. The first thing you need to do is face the fear, embrace it, use it as motivation and do whatever we can do to live another day.
We’re the cure. And the cure will be different for everyone. Find support. Find a good doctor (conventional or other) and fight. Find what works for you. Do everything in your power to listen to that voice inside your head, but also know when to ignore the fear that disguises itself as that voice.
Cancer is a complicated disease but it’s not a death sentence. It’s a wake up call to start living and to be better than you were before.