I literally can’t do anything normal.

My body is an anomaly.  This is not news to anyone.

I’m immune to chicken pox.  No literally, I am.  Growing up, it was always kind of a running joke, that I’d never gotten it, even after my sister got it, even after my parents tried to get me to get it.

Because in kids, it’s just an annoyance, right?  But in teens and adults, it can be pretty damn serious.  So I was getting older and older, and had never gotten it.  I was approaching my teens, and my parents’ friends, who had a daughter about my age and a son about my sister’s age, brought over their kids for a sleepover.

Their son currently had it.  And guess who slept next to me in the fold-out bed?

I still never got it.  It was funny.

But when I got pregnant, I decided it probably was time to get vaccinated for it.  I mean, obviously I was going to vaccinate my own kid for it, but some people don’t like science and facts, and don’t vaccinate their children (including my cousin).  Being around unvaccinated children could put me at risk, and with a kid of my own, I was likely going to be around kids more.  I figured I might as well get vaccinated, after I had my kid.

But when I mentioned that to my obstetrician, she looked at me like I had three heads.  “What?  You haven’t been vaccinated?”

“No, the vaccination wasn’t required until after I was out of school.”

She checked my chart again.  “You have the antibodies for it.”

What?”

She thinks I somehow caught an inert form of the virus, that triggered an immune response without manifesting symptoms.  How that happened, she has no idea.

I still have a baby tooth that’s going strong.  A canine, no less.  And other than the fact that it’s just a smidge smaller than the canine on the other side, you really can’t tell.  Eventually I’m going to get it pulled and replaced with a fake one, but as I don’t currently have $1,600, that’s going to have to wait.

I also have a slow metabolism (it’s one of the reasons they do bloodwork on me so often, because my thyroid counts are often low, but not quite low enough, for quite long enough, to be called hypothyroidism) and have a lower base temperature (98.6 is a fever for me, I’m usually 97.2 or 97.4.  Yeah, try and tell any medical professional who doesn’t have access to my chart that 98.6 is a fever).  It takes longer for me to metabolize medications, food, etc, and it’s tough to regulate my body temperature.  I’m cold all the time.

Interestingly enough, hypothyroidism is often accompanied by high blood pressure and high cholesterol, which I don’t have.  My cholesterol is super low, and my blood pressure is anywhere from 110 to 120 over 70 to 75.

It can also affect blood sugar, just as being overweight can affect blood sugar (and blood pressure, and cholesterol), but mine is perfect, if a bit on the low side.

Also, no one can figure out what color my eyes are.  I mean, my driver’s license says blue, and they sometimes look blue, but they’re seriously not blue.  Growing up, it was always a game to have my friends look at my eyes and see if they could tell what color they are.

No one can put a color to it.  They can definitely say what color they’re not.  They’re not brown, or blue, or green, or hazel.

Most people go with gray.  I go with gray.  But… they’re not gray.

So it’s interesting looking at all the weirdness that makes up me.

Apparently, we can add “cancer is harmless” to that list.

I saw my oncologist the other day.  As usual, my numbers are still high.  He ordered more bloodwork and wanted to see me again in another month.

And I promptly lost my shit.

Sorta.

I told him, very firmly, that I was done waiting.  I didn’t want to wait another month for the tests to come back and him to finally decide to test specifically for leukemia.

And he finally explained exactly what’s going on.

So there are different kinds of leukemia, separated into two groups: Acute and chronic.  He said (and these are literally his exact words), “The acute kinds are extremely aggressive and move very fast.  You’d be dead by now.  So you don’t have that.”

And dude, I just had to laugh at that.  Not being dead is always reassuring.

He said he thinks I have one of the chronic types, specifically CLL, or chronic lymphocytic leukemia.  The problem is that it’s a very, very slow-growing cancer, and it’s in the very, very early stages right now.  So early, in fact, that it’s possible that even a bone marrow biopsy would miss it.

As it turns out, there does not exist a single, definitive test that will tell you if you have leukemia, and if so, what kind you have.  And he said the only thing that can really test for CLL is a bone marrow biopsy (which is a brutally painful test), and even that isn’t 100% effective at catching it in stages 1 and 2.

The interesting thing is that I’m younger than the average person with CLL, and I’m otherwise completely healthy.

And as it turns out, when a young and healthy person has CLL, they literally don’t treat it.

Like, at all.

Seriously, I thought the dude was fucking with me.

Who in the motherfucking hell doesn’t treat cancer?

But he kept insisting that I don’t need treatment.  He wants to see me once a month for the next 6 months, and then once every three months after that, forever and ever, and monitor me the same way they monitor patients in remission.

So in one breath he literally told me, “It looks like cancer, I think it’s cancer, there’s really nothing else it could be,” and in the next he said, “We don’t need to officially diagnose it right now, because it’s a brutally painful test, and it might miss the leukemia even if I order it, and even if it catches it, we’re not going to bother treating it, anyway.”

He said he’s got patients who have had it for decades, and it’s never been treated, and they’re still doing fine.  As long as my body can handle it on its own, there’s no reason to treat it, and my body will just go on handling it indefinitely.

Dude…. what the actual, literal fuck?

I was annoyed.  But then I googled it and it turns out, yeah that’s pretty standard.  In young and healthy people, CLL is usually so mild and manageable, they literally don’t treat it.

Because treatment for cancer is pretty fucking rough, and comes with a host of nasty side effects, including fucking cancer, m’kay.

I’m serious, chemo literally makes people susceptible to a number of different kinds of cancers.

So when a young and healthy person has CLL, and the numbers are on the low side, and holding steady (which mine are), the effects of the disease do not warrant the brutality of the treatment.

Also, they’ve found that treating it this early has no effect whatsoever on survival rates, remission/cure rates, or anything.  So as weird as this whole thing sounds, there’s literally no benefit to treating it right now, while my body is still handling it just fine on its own.

And really, it feels so fucking weird.  Like, I’ve literally been bracing for exactly this for months.  I’ve been bracing myself for this diagnosis, I’ve been bracing myself for what the diagnosis means.

But I never fucking saw this coming.  To be told that I have leukemia, I expected.  To be told that it’s harmless, I did not.

And like, I think I’ve just been in shock the last couple days.  Like, how in the hell do you respond to finding out that you have fucking cancer, but oh it’s fine, it’s totally cool, we’re not going to bother treating it.  In fact, we may never need to treat it.

Like, how are you supposed to react to that?  I’ve just been stunned the last couple days.  It’s a freaking weird feeling.

The only potential issue is that I have a family history of non-Hodgkins lymphoma, and CLL can sometimes become non-Hodgkins lymphoma.  So I’m more susceptible to that.

But that’s why he’s going to see me every 3 months, instead of every 6 months, which is more common among people with CLL.  That way, even if it becomes lymphoma, we’ll catch it early and treat it.

And my dad had the absolute worst-case scenario, with stage 4 non-Hodgkins lymphoma, and he had that shit beat in under a year, and then was straight-up cured.  I inherited his genes along with his temper and his emotional constipation, so that’s reassuring.  Even if I get it, I know I can beat it.  Anything that old psycho could do, I can do.

So that’s what’s happening.

And for now, and the foreseeable future, it’s harmless.  Because harmless cancer is a thing, apparently.

18 thoughts on “I literally can’t do anything normal.

  1. Coyote from Orion says:

    What I have learned in several decades in the mental health system without a single criminal deed on my part (despite multiple by those treating us) is that doctors go through extreme hardship when money is taken out of their pockets. Even asking one to buy you a cup of coffee to celebrate 10 years of seeing him and and adding to his research promotion can get his secretary to speed dial the crisis assessment team. Strangely the CAT team response is typically that the doctor is the one with the problem.

  2. greg says:

    Prostate cancer can be like that as well. Watchful waiting it is called in those cases. Strange head space to be in I would think. But it must be some relief that you do not need to go through the bone marrow test or the treatment at this point.

    Best wishes

  3. I’m glad for you–I think!! I would rather you had no CLL but it sounds as if that is as good as it can be–if you have cancer! All the best!

  4. Coyote from Orion says:

    Wishing you the best. I hope you are around for a long time. Have a great week this week. Your writing style is really easy to read. I always like reading your posts.

  5. mr fire says:

    I too have low body temp (usually about 97/5) but never seem to have suffered ill effects from same. I have had prostate cancer, and my surgeon recommended watchful waiting. A good thing I did not take his advice, I’d likely already be dealing with metastasis by now if I had. However all the other advice I’ve gotten from him and my subsequent oncologists has been spot on. Slow acting cancers are frustrating because it’s difficult to pinpoint (even for experts) the point at which action needs to be taken. Feel for you on this, Jen, for sure.

    • Domina Jen says:

      Thank you. Yes, it can be frustrating. I trust this oncologist, though. I researched him heavily, and his list of qualifications is damn impressive. He’s among the best in the state, and an advocate for patients with cancer.

      Still, if my symptoms get any worse, I’ll definitely get a second opinion.

      • Coyote from Orion says:

        Good on you for looking into your own situation and team. Too many people in this country blindly trust or do nothing proactive in their own recovery. I am certainly hoping things keep getting better Jen. Look after yourself x

  6. furcissy says:

    This is about as good of news as possible (with having cancer) Miss Jen. I’m trying to come up with something encouraging but it all sounds bad. On some positive, you will be monitoring it which makes catching it much easier if it begins to progress.

    I do hope this gives some form of relief. Cancer is kind of a bastard motherfucker and the fast moving kind had taken far too many people away from me.

    On a side note, I can strongly relate with the low body temp, normal blood pressure/cholesterol thing. It is interesting that you find yourself cold though, the few I have known who also run cold frequently feel too warm.

    I am very happy that we aren’t in imminent danger of losing you 🙂

    The phrase emotional constipation gave me a good laugh as I wasn’t aware that was hereditary. It also wants me to make up a medication for it. Can call it “Emo-Lax” and sell it in packages of nasty tasting razor-blade shaped chocolates.

    Take care and thank you for keeping us updated.

  7. Coyote from Orion says:

    Just thinking of you. Hope you’re ok. Take care Miss Jen x

  8. thesecretheart says:

    It is pretty rough to be going through all this at your age…and you are so right, it does your head in. Maybe all the love we send you is keeping it at bay! You sound like you know how to make the decisions – and I think that matters most. And your sense of life and humour of course! x

  9. Coyote from Orion says:

    I hope things are going well for you today Jen. Take care x

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