I have cancer. It just showed up one day without permission, and set up shop in my left breast. Then it hit the road via my lymph nodes, which is what cancer tends to do. Having cancer has been a huge learning experience for me, although I would have been happy to never know about any of it. I've read books and talked to people, in my efforts to be prepared. There are some things that I wish I would have known about cancer before I got it, but we all tend to ignore such things when they don't directly involve us. Until it happens to us. I wish that I had known a few bits of information before I was diagnosed.
1. There are lots of tests. And they're not the kind of tests you can study for. I've had several mammograms, plus sonograms, CT scans, MRIs, and PET scans. And blood tests, lots of blood tests. For the last two months, I've been tested way more than I ever would have thought possible. I imagine that I'll have more tests once the chemo starts. And I cannot count the number of men who have seen my unclothed breasts
lately. They're doctors, and it's a simple examination, but I'm not used to whipping out a boob
upon request. Or having men I barely know fondle my breast looking for
the mass that is my cancer, or checking my sutures, or whatever. At least when I was
dating, I got dinner and a movie first.
2. There are lots of needles. If you have a needle
phobia, you will either get over it or you will die. Every time you
turn around, someone will be drawing your blood, injecting you with
something, starting an IV, etc. Because of the onslaught of needles,
your veins will start trying to hide, or they will simply collapse at
the most inopportune moments. Your arms will look horrible with all of
the bruising from people attempting to locate veins. If you end up with
a mediport in your chest, that's something entirely new. You will feel
a bit like a cyborg, with that little piece of plastic in you. But it
will take some of the pressure off your veins, so just get used to it. That's where they will stick the needles after that.
3. Get ready to glow. I have been injected with radioactive dyes, radioactive glucose, etc. I have been injected in my arm. I've been injected right in the breast(Are you wincing right now? Yeah. So did I.), so the dye would travel to the right lymph nodes. No super powers have emerged, much to my chagrin. And when you're radioactive, it completely screws up your day. You're not allowed to be around people. If you actually have a family, they have to stay ten to fifteen feet away from you, especially children. You can't be around pregnant women, either. I'm sure that if I went to the airport, some alarm would sound. Part of me really, really, really wants to test that theory. After all, I tripped the nuclear detector at the White House; I have a reputation to uphold.
4. You will have all the feels. All of them. Think of PMS and dial it up to 11. Emotions that I didn't even know existed have surfaced since my diagnosis. I'm terrified, sad, angry, and anxious simultaneously. Half the time I can't even begin a sentence with the word 'cancer' in it; my eyes tear up and my voice suddenly jumps into the upper octaves as I try to fight a sudden tendency to bawl. Even if I'm not discussing my diagnosis, random things will have me bursting into tears. It's downright embarrassing. The rest of the time, I just want to punch someone right in the face, for no other reason than I have cancer and they don't. It's not right, but the emotion is there.
5. Get used to waiting. And waiting. And then waiting some more. First there's the wait while all the tests are completed. Then there's the wait for the surgery. After the surgery there's another wait, so you can heal, and also so they can make sure that the cancer they removed did not expand into the surrounding tissue. If it did, you have more surgery. I opted for a lumpectomy, and after two surgeries, they still haven't cut all the cancer out of my breast. So even though I went the easiest route for me, I'm ending up with a mastectomy with reconstruction. Except I have to wait until after the chemo and the radiation for the reconstruction. And I have to wait until I've healed from the mastectomy to start chemo.
Maybe I'm supposed to learn patience from all this. God could have just sent me a memo.
Showing posts with label tests. Show all posts
Showing posts with label tests. Show all posts
Monday, November 17, 2014
Monday, October 13, 2014
The Perils of PET Scans
I was diagnosed with breast cancer on September 10. Since then, not a damn thing has happened.
On the face of it, it might seem as though tons of things have happened. There have been tests, and more tests, and still more tests. I've had blood tests, sonograms, mammograms, biopsies, MRIs, CT scans, bone scans. Each test has indicated "something" that has required more tests, because they want to be sure that I don't have cancer any place else. First there was "something" on my lung, then some "things" near my collar bone, etc. Never mind that every single time they tell me that they "found" something on any of these tests, I completely lose it, thinking that it is more cancer.
My oncologist finally ordered a PET scan. PET scans are supposed to be the go-to test for cancer, but my doctor didn't order one for me at first, because my "insurance won't pay for it". Yes, that is exactly what he said. But because of whatever showing up on my lung/other body part, then that justified a PET scan.
I dutifully followed the special diet they give you the night before--no carbs, only proteins, and no caffeine. Not having coffee was extremely difficult, but I managed. The technician asked me if I were pregnant for the 447th time before informing me that I would essentially be radioactive for the rest of the day, so I needed to stay away from young children and keep my distance from adults as well.
"You're kidding, right?" I tried to be patient, to be calm.
He was not kidding, and he went into a discussion of half-life in reference to radiation. I interrupted him before my eyes glazed over.
"I work at an elementary school," Don't these people read the files? "I have a six year old child."
This seemed to throw him, the idea that I might a)work in a place full of children, and b)have a small child. His supervisor, a no nonsense type, had to come in and explain to me that no, I could not have any contact with small children, and adults were an iffy prospect as well. That's kind of an important thing to mention, that "stay away from people until you're no longer radioactive" thing. Probably should be at the top of the list, before the special diet.
The two set me up with an IV, and brought in a lead lined container filled with the radioactive glucose concoction they were going to run through my veins. The glucose would travel all over my body, but since cancer loves glucose, that's where it would stop. I then had to sit quietly in a chair, not moving, so the glucose would not be used by my muscles. Again, something that they could have told me the day before, so I could bring a book. I was not allowed to use my phone, either. Instead, I suffered through ancient magazine articles about looking wonderful while running, since I was too wound up to nap.
After the hour, the technician had me use a "special" bathroom for radioactive people, and then took me into the PET scan room. I entered the room, stopped, and stared at a machine that looked horrifyingly similar to an MRI. I said as much to the tech, who said, no, this was not an MRI. It's closer to a CT machine, he said. It did not look like a CT machine to me, but I allowed that perhaps if two CT machines were put together, it might look like this machine. It might also look like an MRI machine.
"You know that I am extremely claustrophobic, right?" I have specifically stated that fact EVERY single time I've been to this radiology clinic. Since nobody at this place ever reads the files, the technician did not know that, and of course, he had no idea what to do about it. He lamely repeated that the machine was not an MRI, while I stood there hyperventilating, completely overcome with thoughts of coffins, being buried alive and other confinements.
But the test had to be done. I knew that. I was already radioactive; did I have a choice?
I went back to where I'd left my things, dug into my purse, and found the bottle of Xanax that I'd demanded from the doctor who told me that I had cancer. I took one of those pills, gritted my teeth, and was as still as I could be during the test, considering that I wanted to run very fast away from the machine. And also punch the technician in the face for being so damn cheerful. And I admit to some disappointment that all this radiation has not resulted in a single superpower.
My husband and son had to stay at least fifteen feet away from me for the rest of the day, but I dealt with it, secure in the knowledge that after this test, they could schedule the surgery at last. Something would happen, things would get done.
"We found something on your ovary," the nurse practitioner told me the next day. "It's probably nothing, but...we'll need to do an MRI of your pelvis."
So today, the day I was expecting to have surgery, I will be having another MRI. Meanwhile, the cancer appears to have spread to one of my lymph nodes.
At this rate, I'm going to need a lot more Xanax.
On the face of it, it might seem as though tons of things have happened. There have been tests, and more tests, and still more tests. I've had blood tests, sonograms, mammograms, biopsies, MRIs, CT scans, bone scans. Each test has indicated "something" that has required more tests, because they want to be sure that I don't have cancer any place else. First there was "something" on my lung, then some "things" near my collar bone, etc. Never mind that every single time they tell me that they "found" something on any of these tests, I completely lose it, thinking that it is more cancer.
My oncologist finally ordered a PET scan. PET scans are supposed to be the go-to test for cancer, but my doctor didn't order one for me at first, because my "insurance won't pay for it". Yes, that is exactly what he said. But because of whatever showing up on my lung/other body part, then that justified a PET scan.
I dutifully followed the special diet they give you the night before--no carbs, only proteins, and no caffeine. Not having coffee was extremely difficult, but I managed. The technician asked me if I were pregnant for the 447th time before informing me that I would essentially be radioactive for the rest of the day, so I needed to stay away from young children and keep my distance from adults as well.
"You're kidding, right?" I tried to be patient, to be calm.
He was not kidding, and he went into a discussion of half-life in reference to radiation. I interrupted him before my eyes glazed over.
"I work at an elementary school," Don't these people read the files? "I have a six year old child."
This seemed to throw him, the idea that I might a)work in a place full of children, and b)have a small child. His supervisor, a no nonsense type, had to come in and explain to me that no, I could not have any contact with small children, and adults were an iffy prospect as well. That's kind of an important thing to mention, that "stay away from people until you're no longer radioactive" thing. Probably should be at the top of the list, before the special diet.
The two set me up with an IV, and brought in a lead lined container filled with the radioactive glucose concoction they were going to run through my veins. The glucose would travel all over my body, but since cancer loves glucose, that's where it would stop. I then had to sit quietly in a chair, not moving, so the glucose would not be used by my muscles. Again, something that they could have told me the day before, so I could bring a book. I was not allowed to use my phone, either. Instead, I suffered through ancient magazine articles about looking wonderful while running, since I was too wound up to nap.
After the hour, the technician had me use a "special" bathroom for radioactive people, and then took me into the PET scan room. I entered the room, stopped, and stared at a machine that looked horrifyingly similar to an MRI. I said as much to the tech, who said, no, this was not an MRI. It's closer to a CT machine, he said. It did not look like a CT machine to me, but I allowed that perhaps if two CT machines were put together, it might look like this machine. It might also look like an MRI machine.
"You know that I am extremely claustrophobic, right?" I have specifically stated that fact EVERY single time I've been to this radiology clinic. Since nobody at this place ever reads the files, the technician did not know that, and of course, he had no idea what to do about it. He lamely repeated that the machine was not an MRI, while I stood there hyperventilating, completely overcome with thoughts of coffins, being buried alive and other confinements.
But the test had to be done. I knew that. I was already radioactive; did I have a choice?
I went back to where I'd left my things, dug into my purse, and found the bottle of Xanax that I'd demanded from the doctor who told me that I had cancer. I took one of those pills, gritted my teeth, and was as still as I could be during the test, considering that I wanted to run very fast away from the machine. And also punch the technician in the face for being so damn cheerful. And I admit to some disappointment that all this radiation has not resulted in a single superpower.
My husband and son had to stay at least fifteen feet away from me for the rest of the day, but I dealt with it, secure in the knowledge that after this test, they could schedule the surgery at last. Something would happen, things would get done.
"We found something on your ovary," the nurse practitioner told me the next day. "It's probably nothing, but...we'll need to do an MRI of your pelvis."
So today, the day I was expecting to have surgery, I will be having another MRI. Meanwhile, the cancer appears to have spread to one of my lymph nodes.
At this rate, I'm going to need a lot more Xanax.
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