For various reasons, I haven’t posted in a long time. Mostly it’s because sometimes, you want to forget about cancer. Who am I fooling? The truth is, you don’t. You don’t because you can’t. And you can’t because it never truly lets you go. It’s like the stain that won’t come out, forever imprinted in your psyche, on your body. You are never quite the same again after the day of diagnosis.
I’m writing here and now because of a milestone, plus, I have something to share. First, the milestone. Five years ago when I was diagnosed, it seemed impossible this day would come. It’s a significant marker for cancer patients, one each of us yearns to reach. There’s a two year one as well. Let’s be honest, there are a ton of small milestones and goals in between and all along. Get the treatment plan. Get through treatments. Heal. Make it through the next scan. And the next, and so on.
The differences between the two year and the five year markers are this:
- Most cancers that are going to come back, usually will within two years or so
- After five years, one is even less likely to get a recurrence.
That said, most cancer doctors will never say you’re cured. I’ve read that even if the cancer hasn’t returned, it could. That even while you’ve completed treatments, and made it to five years, cancer cells can get left behind and could decide to grow again. This is the stain of cancer on your body, on your mind, and on the minds of those around you.
In the very beginning, through treatments and then post-treatment, most cancer patients (like me) live in increments of time between their scans. Every three months, off I went to get mine, and then waited anxiously for results. If/when they were good, I could go about life with a bit of ease. As the next one came up, my tension and nerves over it would grow. One learns to ride the cancer roller-coaster, gripping and holding on, tight as we can.
Over the five years, there have been good scans and bad. The one for the metastasis to my lung. The one where they thought I had bone cancer. (game changer) The one when lesions were found in my liver, and my diagnosis became incurable cancer. Since treatment for that, I have continued to be checked every three months. Several “stable” scans over the next couple of years got me moved to a stretch of four months. That happened in May of 2021, then a six month stretch was offered in January of this year.
Now comes a bit of an extraordinary news.
I had a scan this past Friday, July 29th, the first in the new six month cycle.
I will admit to a major case of nerves, because after all, there was that extra three months and cancer does seem to have a mind of its own. I was cautiously optimistic. You can imagine my shock at hearing “there are some new spots.” My oncologist was quick to point out, “I’m not worried. Every July there are new technicians (inexperienced) who come on board to read these, I think you’re fine, but let’s get a liver MRI to be sure. It’s been a while.”
He wasn’t worried but I was, and stunned. His “I think you’re fine,” didn’t even penetrate. My mind did what my mind does, fast-forwarding to where are they, how many, what would my treatment be – Lord, not chemo again. That would make three times, and from the last round, I already have permanent side effects. Three years of stable, stable, stable, and now this? I was handed my check-out papers and out the door I went.
The girl at the front desk took to heart my oncologist’s instructions: “MRI now.” It didn’t matter he also added I come back in six months. He was certainly standing by his “I’m not worried,” but I don’t operate like that. 😬 I was WORRIED.
Three hours later, I was in the clanging/banging/knocking MRI machine for forty minutes. What a great way to spend a Friday afternoon. I was told it would take two to four business days to get a reading. I went home for the weekend to wait.
Duke Medical now has a new process. As soon as a scan is read/interpreted and notes are written up, they are released, to you, the patient, through a handy interface called Duke MyChart. I really like this interface for a variety of reasons – paying bills, passing messages along, etc, worrying over RESULTS. Yes, you get to read them before you’ve even been contacted by your doctor. That’s INTENSE and quite honestly, heart pounding. They have a handy, friendly “patient version” where you can hover your mouse over the medical terms and read the description. There is nothing to manage heart rate skyrocketing, or hyperventilation while one is looking for the statement, “concerning for metastatic disease.”
This is where it gets interesting.
First of all, when you get a scan like this, they discover OTHER things. Those are interesting to read about but, I won’t bore you with my other medical data. What I’m on the hunt for is the liver info. And what do I find? GOLD. The new spots – of which there is a cluster, “while technically indeterminate, these are favored to be benign given homogenous uptake and may be perfusional (related to blood flow) in etiology.” (Heart rate lowers, breathing slows)
And then – even better than GOLD is this: The remainder of the lesions, while indeterminate, are unchanged when compared to 2019 and favored to be benign given stability over time.”
What??? I asked the medical team to confirm my interpretation that the cancer did NOT metastasize to my liver. “Is that right?” I asked. “Did I interpret this right?” Of course they can’t/won’t say. What they said was as ambiguous as some of the readings of a scan where you get phrases like “not definitely seen,” or, “not definitively seen,” etc. They said, “There’s no way to tell, but the scan looks very good!”
Which makes me want to scream. I understand why they are cautious. They are in a practice that deals with a lot of death, a lot of uncertainty, and without a doubt, every single patient is uniquely different. Were those spots cancer at one time? 🤷🏻♀️ What I do know, at least from what I’ve read is this, lesions that are malignant don’t become benign.
Should I be doing the happy dance – you bet. But . . .
Another reason why it seems one can never fully escape from a cancer diagnosis has to do with something else I recently read. Cancer can hide. Cancer can be in your body in undetectable cells called micrometastases, or in the stem cells of the cancer. There you are, (like me) believing you are at the “no evidence of disease” (NED) stage, and further more, a metastasis may not have occurred AT ALL, which (IMO) is a game changer too as to my survivability. Right??? Yet, it can lurk like an alligator in a Florida swamp. Even if with chemotherapy, which targets and kills cancer cells that are in certain stages of division, it may not kill all cancer cells because that depends on what the cells are doing. I.e. if the cancer cells are not at the right division stage for that chemo drug, or not dividing at all, the drugs won’t kill them.
However. This is why many people get more than one chemo drug, and it’s why the doses are staggered out over several weeks. Like my last treatment which involved some pretty rough drugs like Cisplatin for 2 months, then switched they switched me to Carboplatin due to side effects, and I had Fluorouracil 5 throughout. Honestly? If those didn’t kill me, they SHOULD have killed the cancer cells!
Regardless of all the above, I feel so optimistic. I don’t have to go to Duke Raleigh Hospital for a scan until January, 2023.
By then, I will be entering into my sixth year, post diagnosis. Unbelievable.
“Well, it’s all right, we’re going to the end of the line.” 😉
DEAR CANCER 