“So, what should we do next? Something good? Something bad? A bit of both? A bit of both.” – Starlord Peter Quill
Yeah. I had a Guardians of the Galaxy flashback when the doc dropped the news in our laps. Of course I’m Starlord and Heather is Gamora. Leave it to me to be a huge nerd in a time of partial crisis.
I need to take a few minutes to write this all out for myself. It’s kind of a way for me to process everything. Today has been a whirlwind. Having my wife and kids here is great. Without Heather at the appointment today, I wouldn’t have asked half the questions we did because of the unexpected nature of the results. But at the same time, while my family is a welcome distraction, I haven’t had any time to take in the information and process it. Writing should help me and anyone else who has questions.
My CT scan results today were of a good news, bad news kind. The scan still shows only one liver tumor that has shrunk from my last scan in October (6 months ago). However, there were three lesions of interest in my abdomen at that time that doctors either thought were abscesses or cancer. After my surgery last year, I was on PICC line antibiotics which caused those three lesions to shrink; and then I was on Chemo, which scans continued to show them shrink. Which means the docs still had no clue what they confidently could be. Well, after six months of no toxic chemo, one of the three lesions is growing, which likely (definitely?) means cancer. The other two lesions (likely also cancer?) are stable and not growing. And the other liver tumor that once was is still no longer there.
Let’s focus on the good first. My liver tumor shrunk. That’s a pretty miraculous thing to be completely honest. I’m on a non-toxic conventional drug, that when combined with chemo, shows results; however, when not combined with chemo, it typically doesn’t do all that well. I’m NOT doing chemo with it and the tumor shrunk!
Why did it shrink? It is in the liver. The liver is a very important organ. Everything filters through your liver. It regenerates. It has a very strong blood supply, which means anything and everything that goes into the body – food, juice, meds – can affect it. Remember this.
There’s more good news. There is no new metastasis. None. All typical organs that this aggressive cancer usually travels to are clean. Not even a hint of spreading. The conventional doctor said that the likely way to explain that is the healthy lifestyle, supplements, acupuncture, reiki, etc. Those things build up your immunity to help your body stop the spread of cancer. I don’t want people (or myself) to lose this point in the bad that I’ll soon touch on. My alternative treatment protocol is working.
It’s just more complicated now. And that’s the nature of this beast.
A lot of people are asking the obvious question, so I’ll go there. Another Tumor?!? Yes. There is another tumor. Three other tumors possibly (probably). One theory is this: when my colon perforated last March, imagine my intestines as a can of paint. Paint splatters. Cancer was now out of the organ after surgery.
However, the doctor said that neither the radiologist or himself could be certain from the scan if these three tumors are inside or outside the detached large intestine. As many of you know (and possibly some of you don’t, as I don’t go showing it off), I have an ileostomy. My large intestine is just hanging around inside my abdomen, non functional.
So how do we find out if these tumors are inside or outside? Colonoscopy and/or surgery. If they are inside of the large intestine, surgeons will likely do a full colectomy and proctectomy and I’ll definitely have a “tum-bum” for the rest of my life. I had held out hope that one day my ileostomy could be reversed and I’d be “normal” again, but such is life – we don’t always get what we want. It hurts. It’s a blow. But I can live with it.
Now, if the tumors are not in the large intestine, we run into a much harder healing process. These “non-organ tumors” have a weak blood supply. Remember what I told you to remember? A weak blood supply means it’s harder to treat. The treatment that is working for my liver likely won’t work here. I could juice the healthiest vegetables 12 times a day and eat the most organic produce known to man, and this tumor would likely continue to grow until it becomes a bigger problem. After speaking with the oncologist today, it seemed to me he was leaning towards these being outside of the large intestine, but he couldn’t be certain. He said the next steps are a colonoscopy, a surgical consult and possibly chemo.
I want everyone reading this to read this line 37 times. My pride is not too big where I ever said I would never do chemo again.
There may be some double negatives in there but I think it makes sense. I did nine rounds of FOLFOX, which is actually three different chemo drugs. It was brutal. It was hell. After experiencing what I experienced and being told I would be on IV chemo for the rest of my life, I think 97% of you would have stopped it. I’m not even trying to defend my choices, but I am trying to make a point to say why I’m hesitant to do chemo again because of this experience. I made my decision to do non-toxic meds for at least 6-months because FOLFOX took my will to live away. I wanted to die.
This new chemo drug would be Irinotecan. Of course I researched it and it sounds lovely. It does sound more tolerable but it does destroy your white blood cells/immune system worse than FOLFOX. My immune system is strong right now and there’s proof from the scan that it’s keeping my cancer from spreading. The doc then said they can give me a White Blood Count booster shot called Neupogen. The opening graphic on that website gave me chills. “Daily Neupogen can help support your natural defenses during strong chemotherapy.” Strong Chemotherapy.
Another Big Sigh. He also made it a point to say neupogen is not natural and likely wouldn’t be as effective as my own immune system, which honestly shocked both Heather and I. But should we find ourselves in this situation on this journey, there is an option to help.
I asked him how long I’d be on this immune compromising toxic drug should I choose to do it. He said it all depends on the response. It could be relatively short or it could be a long time. That means I’d have a compromised immune system and I could set my body up for the spread of cancer. The goal is to see a good response and then do surgery.
We got all this information in a 30-45 minute consultation. I probably missed 10-15 important questions that I just can’t recall at this point. I obviously needed time to think about it, research it, and get opinions from other people/doctors.
So… How Am I doing?
I’m the guy writing SOS on an island hoping for rescue. There’s a giant monster or something on this island that probably wants to kill me. If only this island was some sort of time travel device where I could go back in time and fix things.
Essentially I’m Jack from Lost. I’m lost right now. I have no idea what to do.
Scenario 1: If I get surgery and the tumors are part of the colon, I’m “cured” of the tumors (not necessarily cancer-free). The caveat here is the surgeons and oncologists like to see a response to chemotherapy BEFORE they do surgery, because of the spilled can of pain analogy. Surgery is messy. If Irinotecan shrinks the tumors, they know they can treat with it after surgery to act as the sponge to soak up the paint.
Scenario 2: If they open me up and the tumors are not inside of the colon, he said they’ll likely just close me back up and say chemo is the only option right now. If I do chemo, the chance that cancer spreads is real. My oncologist even said so. A strong immune system, built through a healthy lifestyle, prevents metastasis. Chemo only shrinks tumors. Surgery only cures tumors. A radical lifestyle change keeps your body from ever developing cancer again, whether in the same place or elsewhere.
Scenario 3: This scenario is still a work in progress. I haven’t been able to confer with my Naturopath Oncologist in Michigan yet. I trust her opinion so I’ll wait for her input before making any decisions. What if I continue exactly what I’m doing conventionally without adding the new chemo drug? This may get TMI for some, but the growing tumor is located in the bottom of the large intestine, so it’s possible some suppositories full of nature’s best medicine could help. Maybe once I start getting the desired mistletoe reaction, I’ll be able to somehow heal this tumor. Maybe the hyperthermia clinics in Toronto and Vancouver can help. I better start the passport application process soon.
I’ll ask and see, that’s all I can do at this point. What’s frustrating is my family and I are already living well beyond our means. Our savings account is dwindling. We can’t afford our stripped back life as it is, and now the thought of adding more travel and more out of pocket treatments… it’s just not possible. It’s hard to be in this situation as a husband and a father and the sole provider in a family. I have people counting on me and I can’t count on myself.
Nothing is guaranteed. Surgery may or may not work. Chemo may or may not work. A different alternative treatment may or may not work. If something was in the 90th percentile, I’d do it in a heartbeat. But nothing breaks the teens. It’s all a long shot. And immunotherapy isn’t an option for colon cancer yet. I’ve seen the video going viral on facebook and I’ve contacted different hospitals. It’s all in trials and I can’t join yet.
I’m stuck in limbo. I have no idea what the next move is, but I’ll make it as soon as my head, my heart and my gut all agree. It didn’t fail me last time. All I can hope is it doesn’t fail me again. I got knocked down today and I’m still trying to stand back up.
But I’m STILL greater than cancer. No matter what happens or what I choose to do. And I still think this body is wonderfully made. In a beautifully complicated and extremely frustrating way.