What to Expect When You’re Ex….Diagnosed

When I got diagnosed, my mind blanked. I went to my Happy Gilmore Happy Place for a little while. Only not the actual happy place – the distorted Shooter McGavin version.

I had no idea what to expect, no idea what came next, no idea of survival rates, nothing.

So this post, my idea is to try to give an idea of what comes next when you’re diagnosed with Acute Myeloid Leukemia. What to expect, what they’re going to tell you, and what’s coming up. It’ll also answer questions like “what the hell actually is chemo?”

Disclaimer: I am not a doctor, I have no medical training, and I don’t claim that anything here is the 100% incontrovertible truth. This is merely my experience so far.

Warning: Extremely long ass post.

First thing, let’s get this out of the way. The 5 year leukemia-free survival rate for AML, overall, is between 60 and 70%. Factors that influence you higher or lower:

  • Age (lower is better)
  • Overall fitness (doesn’t help survival, per se, but lets you tolerate the treatments better, which helps)
  • Overall health
  • Any additional medical conditions (having additional complications is bad, obviously)

So the next thing is that you probably went through something similar to me. A few weeks of a persistent flu-like set of symptoms. Or you just felt “off”. Chances are you went into the doctor, got some blood work done, and suddenly they’re asking you to go in for lots of tests. Leukemia might get thrown around. The first thing they’re going to do is a bone marrow biopsy.

Bone Marrow Biopsy

The minute I heard I’d need one of these, my heart stopped for a second. I blinked. Then I resigned myself to an absurdly painful procedure, and just wanted to get it over with.

Now, again, this is just my experience, but believe me, your idea of the bone marrow biopsy is way worse than reality.

I’ve been told I’m atypical, and that lots of people scream and yell and shout. I do have a high tolerance for pain, but honestly, it’s more uncomfortable than painful. Here’s the deal:

Most of the time, they pull the bone marrow from your pelvic bone. Some doctors will have you lay on your side, in a semi-fetal position, and some doctors will have you lay on your belly. I found being on my side to be more comfortable, but that was also a much shorter biopsy, so that could have contributed to it. The second biopsy, I agreed to participate in a number of studies, including one that needed a fair amount of extra bone marrow that really didn’t need to be done. But my philosophy of dealing with this is that if my suffering can help in some way, in some possibility, I’m going to try to help.

First, they use lidocaine to numb the surface of your skin. They say it’s supposed to burn, but neither of my two so far have. The second biopsy, the first shot hit a funny-bone-like nerve that made my back/leg spasm for a second.

Next, they’ll use some more lidocaine to numb the surface of your bone. This just feels like some tapping. You can hear it too – it’s freaky, but don’t worry. Totally normal.

Here comes the fun part! So, I never actually looked at the instruments, but the next step involves actually getting a needle into and through your hip bone. There’s some pressure, and you can feel the doctor wiggling the needle. No pain though. If you’re unlucky, you’ll be like me. I apparently have really tough bones. The second doctor had to take 2 breaks before she was able to get into my marrow. Annoying – but still, no pain.

After they’re into the bone itself, they’ll pull some of the liquid marrow out. They say this experience is different for everyone. For me, I felt a light pressure shooting down my leg. It wasn’t painful, and it wasn’t even particularly uncomfortable. Just profoundly weird. This step can last anywhere from a minute or so, up to several, depending on what studies, tests, and smears they want to do.

The final step isn’t any worse. They either use the existing spot, or move to another. So, repeat the pressure/wiggling from above.  Then, instead of taking out marrow, you’ll feel/hear a slight snip, and that’s it.

My first biopsy left the site pretty sore/painful for about 3 days. My second biopsy was only sore for about a day and a half.

That wasn’t so bad. What’s next?

Well, I hope you don’t mind needles. The most unpleasant part of the experience so far (for me) is the period between getting officially diagnosed with leukemia (aka, your bone marrow test results come back), and before you get your PICC line placed. Expect daily blood draws for labs, a peripheral IV, transfusions of red blood cells and platelets, and lots of fluids. A week later, and the spot where I had my IV in my right arm is still sore. Now, I was dreading my PICC line, but I love it now. So, what is it?

PICC Line (peripherally inserted central catheter)

The “surgery” for this is super simple, super short, and pretty much completely and utterly painless. That’s the fun part. The unfun part is the whole “there’s stuff poking out of me that I need to be aware of at all times”, but you get used to it pretty quickly. Here’s the whole deal:

You lay out your arm. They clean your skin about 14 times, mark the spot, numb the surface of your skin, and insert the line. They use a sonagram to double check where the line is going, and they slowly advance the line. Then they attach the IV leads to the tube, wrap up the site, clean and date the bandage, and then you’re done. The whole experience takes about 45 minutes or so but they’ll actually be doing something to you for maybe 10-15 minutes at most. The rest of the time is setting up, cleaning you, and breaking down. They check placement with an X-Ray, flush the IVs with saline, and you’re good to go.

With a PICC line placed, your life gets a whole lot easier. The morning blood draws now don’t need a needle (right out of the IV in your arm!). Any transfusions don’t need a new or existing IV. All the things that are painful or annoying to get through the IV (namely – all the things) are now non-events through the PICC line.

Next up; CHEMO!

Chemotherapy

So, chemotherapy is the technique, but every cancer and every chemo is potentially different. I’m sure there’s some overlap, but the chemo you get for AML is completely different than the chemo you get for breast, prostate, or other local cancers. If you have AML, and you don’t have any obvious indicators that you’re an outlier, you’re going to get the exact same chemo that I got. It’s called 7/3, due to the fact that you get 2 drugs. 1 for 7 days, and 1 for 3.

The first drug is called Idarubicin. It’s pink, and they’ll administer it over 15 minutes, into a saline line run into one of your PICC IV lines. They push it through a syringe. Supposedly, it turns your pee, saliva, and sweat pink. I was kind of disappointed when it didn’t have that effect on me. I didn’t notice anything from any of these 3 treatments.

The second drug is Cytarabine. This one is the annoying one. You’ll get hooked up to a bag of this immediately following the idarubicin. You are then attached to the IV pole for the next 24 hours. If you’re lucky, your IV meters will have decent batteries, and you’ll be able to walk around, sit in your hospital’s lounge, etc. If not, you’ll be tethered pretty close to your bed, unfortunately.

They also pump you full of anti-nausea meds, but you could hook me up to one of those while I was sleeping and I wouldn’t notice (although I haven’t gotten nauseous at all, so they must be working).

The most unpleasant part of that drug, so far, has been the fact that you only get 15 minutes between bag changes in order to shower. You will look forward to that shower, I promise you. At one point, I was getting a blood transfusion that ran into the 15 minute grace period, and I had to miss a shower. That was awful.

So far, though, the only side effect I’ve gotten is some stomach cramps. I finished my last bag of chemo today. They tell me the next few days might get unpleasant, but a week or so from today, things should start getting better.

What comes after chemo is lots more waiting. You wait until day 14 for a follow up biopsy. Assuming everything is good there (which they tell me is a 70-80% likelihood), you wait another week or two for your blood to return to normal, and then you get to go home for a few weeks.

Am I Cured?

No. Unfortunately, this first round of chemo is only to accomplish one thing – first remission. Remission is defined as having zero blasts (immature white blood cells) in your blood stream, *and* completely normal (as in, not anemic) blood counts.

How do I get cured?

Well, that depends on lots of genetic testing, chromosomal analysis. The long and short of it, though, is that you either get 4 more batteries of the above chemo (a little stronger, actually), or you’ll need a stem cell transplant. The first part is basically the same as the initial battery. Stem Cell is more effective, but more risky. And a bit more frightening.

Stem Cell Transplant (aka Bone Marrow Transplant)

For the donor: I had always assumed this was an absolutely awful procedure, but apparently, the way they do things is pretty simple and easy. The donor gets 5 shots that they can self-administer at home over 5 days. It stimulates their bone marrow to over-produce stem cells so that they get out into their blood stream.

They’re then hooked up to basically a big dialysis machine, and over the course of 5 hours, their stem cells get filtered out. Completely painless, if tedious and boring, procedure.

For the recepient: Actually getting the stem cells is super easy and super simple. They hook up a bag, just like you were getting a transfusion of blood. Few hours later, you’re done.

Unfortunately, it’s not that simple.

The problem is, in order to get your body to accept the stem cells, they basically have to kill off your existing bone marrow. It’s a pretty brutal round of chemotherapy that completely eliminates your white blood cells. It has the unfortunate side effect of being a sterilizing procedure. So if you’re young, like me, and might want kids at some point, you’ll be making a trip to a sperm or egg bank.

This part of the process carries lots of risk of infection, sickness, and all the normal issues with chemo (potential heart, liver, and gastrointestinal damage).

After getting the transplant, you also face the possibility that your body rejects the stem cells. You also face the possibility that the stem cells reject *you*. It’s called Graft vs Host, and it can result in anything as mild as a skin rash, to being actually fatal. The fatality rates are low, but existent.

After all that, if you go 2 years without a relapse, you’re mostly clear. Wait an additional 5 years with no relapse, and you’re technically “cured”, although a chance of relapse is basically always possible.

Finally, you can go through all that, and there’s still a chance that none of it works. There is a higher-than-zero percent chance of just not making it.

Face that. Accept it. And then spit in its face and kick some leukemia’s ass.

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One comment

  1. […] If you want to know a WHOLE LOT about what it means to be diagnosed with leukemia, or if someone you know/love was recently diagnosed, feel free to point them to this [Warning: very long!] post. […]

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