I’ve been in Chicago these past 3 days for my 3-month check up. Unfortunately, the CT scan shows two spots on my liver and an enlarged lymph node in my back. The radiologist can’t confirm anything because all he can see is discoloration in my liver, but it’s safe to assume that I have cancer in my body again.
The good news is I already knew.
The weekend before Easter I had a bad 24-hour bug. I had a 102 fever, no appetite and couldn’t get out of bed. Once it passed, I still felt pretty terrible so I asked my naturopath oncologist to fax a blood test script to Beaumont so I could check my levels. I’ve been getting my blood checked monthly since my surgery (even though my Chicago oncologist wouldn’t write the script as he didn’t deem it important). It’s important to stay on top of your labs, especially with a cancer diagnosis. I had a mostly normal result except for three important values…
High C-Reactive Protein. 40.1
High ALT liver enzymes. 106
Above normal CEA cancer marker. 5.3
My naturopath called me the Thursday before Easter and believed — because these three levels were all high — that cancer had returned to my liver.
I immediately scheduled an appointment with her and started discussing the next steps. I already had a CT scheduled in two weeks, but there really wasn’t a need to wait for confirmation. We quickly started by upping my high dose milk thistle (which I already take daily) and adding in Alpha Lipoic Acid. I started back on Low Dose Naltrexone and reintroduced cbd/coconut oil capsules at night. We discussed starting mistletoe injections again to wake up the immune system as well as a phase II trial for an immunotherapy drug named Opdivo. Unfortunately it looks as if having an autoimmune disease will prevent me from participating in this study.
I upped my supplement game the week after Easter. On Friday, I left work early and found myself in the Emergency Room later that afternoon for ostomy related issues. I had labs and an X-ray that night at Beaumont and interestingly enough my liver enzymes had already normalized, down from 106 to 29. Everything ended up being fine so I was discharged early that evening.
Two days later I was on my way to Chicago.
I didn’t want to go. I told Heather it just felt so different this time. The hospital itself went through a lot of changes these past three months. There is no longer any discounts for hotel stays or their organic cafeteria food. The alternative services, which used to be complimentary to patients, now require a credit card transaction at the beginning of each appointment. Only acupuncture is complimentary now. The things that used to make it stand apart from the rest of the cancer hospitals I’ve been to are now gone. It feels very much like a standard run-of-the-mill cancer hospital now.
I talked in length with my Quality of Life doctor Awilda and my Acupuncturist Irina about my high CEA and what it could mean. Both of them explained what I already knew… I have Stage IV cancer. It’s a life-long disease that I’ll have to monitor and heal the rest of my life, especially the way I am choosing to heal my cancer. Both of them believe I am making the right choice in my approach to stage IV cancer, which is reassuring because they’re both very intelligent people. Irina even explained that in Chinese Medicine, the liver needs extra support during Spring and fluctuating levels and liver problems are very common this time of year.
“Does seeing cancer or not seeing cancer change your lifestyle choices? If not, then don’t worry about being cancer-free. Just always make the right choices to continue to heal your body.”
My labs came back shortly after these appointments and I had a little hope return that maybe, just maybe, nothing would show up on the scans.
C-Reactive Protein. 1.0 (down 39)
ALT liver enzymes. 19 (down 10 more from 29)
CEA cancer marker. 4.9 (down .4 from 5.3)
That wasn’t the case though. I have two spots on my liver that are unmeasurable but very likely to be cancer. I also have an enlarged aortocaval lymph node in my back. They wanted to run a PET scan or MRI and do a biopsy to confirm cancer; however, that meant two more days in Chicago and more invasive tests for something that is very likely to be cancer recurrence — two more days I really couldn’t afford to miss work and pay for the hotel. I told him I’d rather do those tests at home if I choose to do them at all. I also told him this still doesn’t change my mind about treatment, so he agreed the additional tests aren’t necessary unless I want to do radio-frequency ablation, which could be an option.
I think the moment that frustrated me the most is that when I brought up that 12 of 13 specimens they removed from my last June were DEAD CANCER CELLS, he shrugged it off, saying he had no explanation.
When I asked him if going back to Vectibix and everything I was doing before would be an option, he mentioned that Vectibix alone wouldn’t produce the result needed and we’d need a biopsy to even let me start again because this could be a different mutation that Vectibix wouldn’t treat.
“But I’m not crazy. My body healed 12 of 13 cancerous growths in my body. The surgeon removed things that presented as cancer and the pathology report said they were dead cancer. I didn’t dream that. It happened. It can happen again, right?”
He recommended I get the tests and the appointment ended.
I truly don’t know all of what’s next. I start mistletoe injections as soon as it ships here. I’ve already upped my doses of supplements to pre-surgery levels (which I shouldn’t have ever stopped but we were trying to be frugal). I’m also looking to start Vitamin C infusions weekly.
Unfortunately we’re left in the position so many cancer patients are left in, especially when they choose to take an integrative approach to boost the immune system and heal the body rather than hinder it. It’s going to be expensive.
We’ve been considering putting our house on the market for a few months now. Luckily we have a house in Royal Oak and we are in a seller’s market. We can likely double what we owe on this house, allowing us to put 20% down on a new house and pay off our debt from the first round of cancer while giving us some money in the bank to pay for round 2 of cancer. The bad news is we are in a seller’s market and it’s very hard to find a house right now for an affordable price in a good area within 20 minutes from the kid’s school that is the right fit for our family. We are looking to stay in Oakland County because we really want to keep our kids at Our Shepherd. Cancer shouldn’t uproot and mess with their lives too.
The hardest part moving forward is knowing my life will always be about healing cancer. Forever. I will always need to stay on top of that.
Now, after this confirmation of cancer, we may be taking a break from thinking about selling the house, as it might be too much to take on right now. Then again, it’s a good way to get the money to afford the things that could help me.
How can you help us?
So many people have helped us so much and we can’t ever repay it. I guess the best thing you can do for us is pray that we figure out the next steps we should take and then support us any way you can. If anyone has any connections with providers of IV therapies or supplements or acupuncture, etc… so that we can afford these treatments easier, please reach out to us. If anyone reading this is paying out of pocket for treatments like this and are able to afford it, please give us some insight!
The Good News.
The good news is that these spots on the liver are so small they’re not even measurable. The lymph node is a bit confusing, but it’s just an enlarged lymph node. I’m trying to push the fear of cancer aside and think about the situation logically. I can turn up the effort on my natural healing again and see what happens to these spots. Hopefully I have a similar result.
You have to understand stage IV cancer too. I may have used the words Radical Remission and Cancer-Free a bit too quickly these past 9 months. Maybe this is still round 1. In hindsight, I should have never let up. I need to dive back in head first.
How am I doing?
I feel fine. My Quality of Life is high. My fear is low. My depression is low. Don’t get me wrong, I’m discouraged. I wanted to believe that surgery and a healthy lifestyle could be the thing that “cures” me, but obviously I need to do much more, forever, with no breaks.
And that’s the part that scares me. I don’t know if I’ll always be able to stay on top of it. All I can do is try.
The song below is basically how I feel day in and day out lately. I hope this mountain is moveable… but even if it’s not…
I just have to remind myself that 12 of 13 were dead cancer.
The Hills and Valleys of cancer. The past 9-months at the top of the hill was such a relief that only a cancer patient could possibly understand. As I take the first few steps to start the journey back to the valley I just have to remember there will be a hill to climb again soon. Plus, there’s a lot to discover about yourself in a valley.