My mind is a rollercoaster tonight.
My day started bright and early at 6AM with colonoscopy prep. Without getting into the TMI details, prep wasn’t very successful. I’ve had a non-functional large intestine for over a year now, so we’ll just say I was in a lot of pain from not even half an enema bottle.
Moving on to the colonoscopy, it wasn’t great news either – but it was expected. Disuse colitis. When the bowel hasn’t been used, it grows very angry and inflamed. The doctor could only see 10cm into the colon before he had to cancel the procedure. He wasn’t able to biopsy, as it would’ve caused more damage. Long story short, there is no hope of reconnection (which I already assumed). #TumBum4LifeSuckas. I spoke with the Gastroenterologist and he spoke with Heather on the phone as well. He explained the situation and said,
“Surgery at this point is the best step towards a possible cure”
We already knew this, but it’s always nice to hear. However, “cure” doesn’t really mean anything to me. It’s one of the buzz words like “Cancer-Free” that I hate. No one is cancer-free. You leave your body sick long enough and poison it long enough with unhealthy living, the cancer cells in your body will eventually win. It usually happens in the twilight of your life, but cancer eventually catches up with our unhealthy lifestyles.
Stage 4 cancer at such a young age will never be clinically “cured” or declared “cancer-free”. I’ll be healing from cancer the rest of my life. That’s why I’ve always said cancer is a wake up call to change your lifestyle. Even early stage cancer demands a drastic lifestyle change in order to keep it at bay. You need to make a commitment to your health.
A few hours after the anesthesia wore off, I had my surgical consult. My surgeon, Dr. Harold Huss, greeted me with one of his students and he was an amazing source of knowledge and confidence. He personified both. He spent an hour with me in total, answered all my questions, listened to me talk about my background and knew as much about my case as I did through reading the reports from both CTCA and Beaumont. He was well prepared. He sympathized with my decision to stop chemo, even leaning over to his student and saying to her,
“You have to understand that no one cancer patient is the same. Chemotherapy is harsh and while some people will call him a baby for stopping chemo, I won’t. No cancer patient is equal and we have to treat them individually. Chemo is not easy.”
You had me at hello, doc.
He gets this disease, and more importantly, he gets the patients. He is younger than the beaumont surgeon I really liked, but reminds me of him. After I asked about his experience with this type of surgery, he eased my fears and said he does this type of surgery 3 times a week. His bedside manner reminds me a little of Dr. House, but sympathetic and not a jerk. He doesn’t have kids and I’m not sure if he is married. It seems like his work is his life, and I’m okay with that.
Confidence in my surgeon? Check.
This will be a 12 hour surgery. He will cut me open from right under the sternum to the top of the groin. A good 9-11 inches. Yikes. Goodbye Bikini. While he’s in there he will remove the colon, the rectum, feel the liver and cut off any tumors he sees there and inspect the peritoneum layer around the diaphragm near the liver. When he looked over my CT scan, he saw an area near the liver that he doesn’t like and he wants to see if cancer somehow found it’s way into that tissue. Here’s his analogy.
“Imagine your body is a steel trash can. Inside the trash can is a garbage bag filled with garbage. Each piece of garbage is an organ and each is in it’s own bag. The garbage bags are the peritoneum layers of your body. Cancer can invade those tissue areas and cause no pain or discomfort. I don’t like how that looks on your scan so I’m going to look into it.”
If he does see any abnormal looking tissue, he will remove it. He will also look for cancer on every organ in my body that he can see, as a CT scan can only see cancer cells that have grown past 4mm in size. He said he would go as far as removing small intestine sections with disease and reattaching it together, cutting out parts of the stomach, and even removing the spleen.
I appreciate how thorough he was being in this meeting, but there are some organs I need to remain inside me in order to always heal cancer for the rest of my life, and one of those organs is the spleen. It is responsible for producing white blood cells. I need my spleen! Now, I do NOT believe I have cancer on my spleen, or in my small intestine, nor in my stomach. He’s just giving me an idea of a worst case scenario. And I can only say I’m 99% sure of cancer not being anywhere else. There is the chance it is in other places and smaller than 4mm. So I’ll have to make a decision to tell him to ignore certain abnormalities he sees in certain organs so I have a good chance at healing from cancer. I’m not in this to live longer, I’m in this to heal. He’ll know that before he opens me up.
He also talked about doing something called HIPEC. What is HIPEC? I’m glad you asked.
Hyperthermic intraperitoneal chemotherapy (HIPEC) is a highly concentrated, heated chemotherapy treatment that is delivered directly to the abdomen during surgery. Unlike systemic chemotherapy delivery, which circulates throughout the body, HIPEC delivers chemotherapy directly to cancer cells in the abdomen. This allows for higher doses of chemotherapy treatment. Heating the solution may also improve the absorption of chemotherapy drugs by tumors and destroy microscopic cancer cells that remain in the abdomen after surgery.
Before patients receive HIPEC treatment, doctors perform cytoreductive surgery to remove visible tumors within the abdomen. Cytoreductive surgery is accomplished using various surgical techniques. Once as many tumors as possible have been removed, the heated, sterilized chemotherapy solution is delivered to the abdomen to penetrate and destroy remaining cancer cells. The solution is 41 to 42 degrees Celsius, about the temperature of a warm bath. It’s circulated throughout the abdomen for approximately 1 ½ hours. The solution is then drained from the abdomen and the incision is closed.
HIPEC is a treatment option for people who have advanced surface spread of cancer within the abdomen, without disease involvement outside of the abdomen.
I am open to this, as it is only used once and it takes care of problem tumors that have weak blood supplies in the abdomen (as you recall, my cancer originally perforated and spread cancer like a spilled can of paint in my abdomen). It also never goes directly into the blood stream so the side effects are minimal compared to chemo that runs through your veins. I’ll look into this, run it past my naturopath oncologist, and make a decision.
When is Surgery?
Heather and I have yet to finalize anything, but I think we’re looking at the first or second week of July. I just need 4 weeks free of the EGFR targeted therapy drug, which I received today, before I can do surgery. Recovery from this surgery, if I am able to get HIPEC and agree to do it, is 14 days. He would also like me to drive home rather than fly and stop every hour to walk around to prevent any clotting. If anyone remembers my elephant legs and feet from my last colon surgery, you’ll know how important this is to do. He feels safer with the car ride than the pressurized cabin of an airplane. Plus, if something bad happens on the airplane, you need to grab a parachute to get to a hospital.
So 14 days in Chicago. My wife and kids will be with me during this process and many friends and family have said they would like to help out as well. We’ll take any help we can get. Whether it’s looking after our house and dog, to coming up to spend time with heather and the kids – anything to help us through this time will be greatly appreciated. Zion is about 40 minutes north of Chicago, so you can easily take the train to the city. CTCA will even drop you off and pick you up from the train station. I will accept gifts of LEGO sets and Star Wars toys, but Milo will fight you for them.
So, once all visible cancer is gone, my colon and rectum are removed, I’m washed with HIPEC and I’m sewn back up, I will be part of the “watch and wait” group of cancer patients. I will get scanned every now and again to see if my cancer is growing back and I will always be on a healthy, mostly vegan, no sugar or red meat diet with supplements to keep my immune system strong. Any cancer patient, regardless of stage, who doesn’t make a drastic change to their diet and lifestyle is simply playing with fire. Just because you have no tumors, doesn’t mean your cells can’t “malfunction” again. You ALWAYS have to build your body up.
Also, all you non-cancer patients… DO NOT LET IT GET TO THIS POINT! Treat your body well! Most of your body’s cells regenerate in under a year, many in just 30 days! You can improve your health with simple changes in a month’s time! Start small! Cut out sugary drinks first! Do something!
Also, I barely eat any meat ever (chicken and fish very seldom) and my protein level is perfect. I do not drink cow’s milk as it is made for baby cows, not humans, and my calcium and vitamin D levels are perfect. You do not need either to survive. I’m not saying give it up completely… just don’t eat it every day. A good rule of thumb is to make sure at least 50% of your meals are raw. At least dinner. Just try it!
Okay, Rant over.
I want to say something to everyone who has helped Heather and I and our kids this past year. I can’t begin to thank you all. The cards, gifts, donations, visits, help with kids, help around our house, everyone who has lifted us up in prayer, Angels of Hope, New Day Foundation, Our Shepherd Lutheran School and all the teachers and staff – you all mean so much to us. We don’t know how we’ll ever pay you back for the love and support you’ve shown to us. We can’t.
I’m not cancer-free or cured, but today I feel like I am. And it’s a very strange feeling.
Today is a good day.
Here’s to tomorrow.