For those who have been following the story of my cancer journey, I follow two markers. I have been posting about this since April 2021, when I was first diagnosed with metastatic brain, liver, and lung cancer. Since then it has also hit a couple of areas in my bones.
A little backstory.
When I was in my 30s, I was diagnosed with inflammatory breast disease. That was 19 years ago, and at the time, they gave me 6 months to live. I looked up the data in medical journals, and 85% of those diagnosed with this type of breast cancer lived 18 months or less.
To fight these grim statistics, one of the things I did — I tracked my cancer markers religiously. The ones that I used — ca 27–29. For 6 months, doing only my own natural treatments, my markers stayed stable, around the 30–35 range. Then they “spiked” up to 42, I panicked, and agreed to do chemo.
Looking back, I wish I had held out longer. I also wish I knew then what I know now about nutrition and supplementation.
Chemotherapy was the most miserable thing I’d ever been through. If I hadn’t made my body so much healthier and stronger in those 6 months, I wouldn’t have survived the cancer treatments! As it was, I had to cut it short because I became too dehydrated and ill.
I also believe that I was on the right path and if I’d maintained my diligent lifestyle, I might have been able to avoid the chemo altogether and my body wouldn’t have been damaged by the poisons. Unfortunately, with chemo, your body must be poisoned to be cured. If you are lucky, your body survives the poison but it can take years to recover.
This time around, with a lemon-sized tumor growing in my brain and removing the function of one of my legs, I needed emergency procedures. So yes, I immediately signed off on surgery, radiation, and chemo. The trifecta of invasive cancer treatment. But sometimes you actually do need a hammer.
This time around, I’ve agreed to do these types of treatments, but not nearly to the extent the doctors have wanted me to. Then again, once again, they assumed I’d be dead within months, and I’m still here.
So, a couple of weeks ago, I posted an article saying I was clear on cancer. This was based on one of my current cancer markers, the LDH test. While considered a somewhat vague marker, it has been a good predictor for the type of tissue damage caused by malignant cancer.
My LDH levels had been trending up. They did go up and down some, though. They were up in the 900 range back in January and February. So the fact that they had fallen to the range normally seen in healthy, cancer-free people, made me overjoyed.
However, that is only part of the story. I misunderstood the rest, at first.
A more accurate measure of cancer’s progress in the body is a ctDNA test. The brand name that currently offers this to patients is Signatera and as it was only recently patented, it’s fairly expensive. It is also hard for me to get the level of data I like on it. I get the test done about once a month, whereas I get my LDH test every week.
When I talked to my nurse over the phone about my Signatera test results on Monday, she was super-excited. Over time, my numbers had gone down from 1232 to 710 to 553, until, on Monday, they were at 0.19.
I’m an engineer. To me, 0.19 relative to 1000 or even 100 is a rounding error. You just look at it as zero, right?
Wrong. As I was told when I went in for my bloodwork on Tuesday.
In the engineering world, a tiny fraction can be ignored. In the oncology world, not so much. Oncologists know what Ben Franklin did about compound numbers — that division can work rapidly over time.
For a doctor, 0.19 is still a level of cancer cells that can multiply into a large tumor mass if left unchecked.
When she explained this to me — it made sense, unfortunately.
So I decided to agree with a further chemo treatment. We’d stick with a low dose, and test my markers afterwards. I decided that I am so close to the finish line, I might as well cross and be done with it.
That doesn’t mean I’m totally out of the woods.
For the next few months, I will continue to do weekly blood work and keep track of my LDH levels. While not as accurate as the Signatera, it is relatively affordable and gives a good first signal of trouble. I will also continue my hard core diet and supplementation program, including lifestyle changes that will help me maintain positive spirits and whatever level of fitness I can manage.
I’m trying to be realistic but also optimistic. I’ve already come so much further than my doctors or surgeon predicted, and I apparently seriously amazed my nurse on Monday.
So despite having another round of treatment, I am feeling pretty upbeat.
I am also trying to keep on top of any other things that might need tweaking. For example, my endocrine system. And my heart. While I’m at it, I might as well get my teeth and eyes checked too. I’ve been neglecting a lot of the “peripheral” stuff because the focus has been on cancer.
Because of all the medical stuff in my life, I’ve been leaning on the people who are close to me and calling when I need a ride, a friend to talk to, or someone to pray with. I’ve been blessed with some really loving people in my inner circle. I hope to travel with them through the last miles of my journey.
I have been very forthright online about my journey through this cancer for several reasons:
- People do pray for me or send good thoughts and wishes my way. Some people have even donated to help pay for my medical bills. I believe that the people who reach out to me sincerely want me to be healed and I also wish for them health and happiness. So when they reach out to me, I also pray for them. This creates a circle of kindness and creative energy in the world, I believe.
- This is not just about me. One reason I also sometimes publish in Wholistique or other online pubs is because I want to share any knowledge I discover that might help someone else. I’ve been flirting with death for a long time and I’ve learned some things. I want to share this with people who might be helped in their own healing journey.
- When I have reached out with information, often people respond back with knowledge, stories, and ideas that also enrich me. If nothing else, I discover how genuinely warm many people around the world are. And that makes me a happier person.
I still remember, years ago, after I was done with cancer treatment the first go-round, traveling with my husband at the time. I was bald and had obviously been through chemo. Random people came up to me to wish me well or even give me a gentle hug. It amazed me.
But I think most people are instinctively kind, or they want to be. And the silver lining within the cloud of cancer is that it illuminates these glimmers in a world that may seem bleak but is actually a place of wonder and joy.
—
Previously Published on Medium
iStock image
The post I Just Passed the Two Year Mark After Being Given 6 Months to Live appeared first on The Good Men Project.