Adventures with Hodgkin's

Not again

A story in the New York Times reminded me of the absolutely awful way Neupogen made me feel:

"Neupogen stimulates the growth of white blood cells and makes his bones sensate in a way he never thought possible; he can feel the marrow aching within them. Painkillers don’t ease the discomfort so much as they drug him into a foggy resignation that might, to a stranger, pass for repose."

I swear I could hear my bones creaking. A tooth cracked. It just *hurt*.

Labels: oncology

Steady as She Goes

Now, I certainly don't have it as bad as this:
Scott's Diabetes Explanation: The Airplane Analogy but it's similar. I need to keep asking myself if I'm tired, and, if so, what kind of tired? I really want to get on the total auto-pilot....

Labels: oncology

Just Lucky, I Guess

NPR ran a story on resorting to superstitions when you feel out of control.
When Not In Control, People Imagine Order:
"New research shows that when people perceive they have no control over a given situation, they are more likely to see illusions, patterns where none exist and even believe in conspiracy theories. The study suggests that people impose imaginary order when no real order can be perceived."

Last week, when I returned to Stanford for my diagnostic mammogram, I panicked because not only had I not brought my cache of cool-but-read magazines to deposit in the waiting room, I had not even read my latest copy of CURE. If it turned out bad, I'd know why. But it didn't. I'm still not sure I can go without reading that issue of CURE--it's bound to come back to haunt me!

Labels: oncology

Twice as Fun

Every year, in the fall, it's time for testing. And now that I'm up for yearly mammograms, the advances in technology are working against me. Digital imaging finds a LOT. Last year the "screening mammogram", the standard, found something and I had to return for a "diagnostic mammogram" to find out it was nothing. Nothing they could identify, anyway, so unless microscopic aliens were setting up shop, I was good to go for another year.

So this year I figured it'd happen again, so when I went in for the screening mammogram I asked the technician to look at last years images to make sure she covered any suspicious ground.

Oh, she says, I meant to look at your previous images before I brought you in.

Go ahead, I said, I'll wait. And I stood there, because there was only one chair and it was in front of the computer and she was in it, and I didn't say anything because I didn't think distracting her would help anyone and she eventually took the images.

And I got the calls, a scary-sounding call from a nurse from each of the three doctors I'd asked the reports to be sent to. They use the trying-not-to-frighten-you-but-you-better-take-this-seriously voice.

So I go back, and when I do I explain the situation and ask each and every person I talk to how to get around this two-trip effort. The best answer was from the radiologist who came out personally to say that my images looked fine. She said that she really didn't know how to combine the two in my situation because it was the insurance company who wouldn't pay for both at the same time. But if there was a symptom they would essentially skip the screening and go straight for a diagnostic. And something transient, like pain, would be the kind of symptom whose disappearance would be easy to explain after the diagnostic screening. Thanks, doc!

Labels: oncology

It's News!

An article in today's San Francisco Chronicle caught my eye: Lymphoma forum, fundraiser walk in S.F. Some of the highlights:

"Lymphoma, the most common type of blood cancer...." (I guess when you go to journalism school them tell you it's a blood cancer. I learned, from HAVING it, that it's a cancer of the lymphatic system. Close, but no cigar.)

"While other kinds of cancer are stabilizing or declining in numbers, incidents of non-Hodgkin's lymphoma - about 332,000 of the 500,000 Americans with lymphoma have this form - are rising by 4 percent every year." (Oh, my, aren't we getting popular?)

"It's a disease I like to treat because we have a lot of success with it," said San Francisco oncologist Dr. Stephen Hufford, who is affiliated with California Pacific Medical Center. "There are so many different varieties - some are highly curable, others aren't curable but you can live a long time. In a way, it's one of the better malignancies that we deal with because of the variety of treatments we have." (It's statements like this that remind me that this is a business, too, and that it may suck to have limited treatment options for people. But seriously, no one wants ANY malignancy!)

Labels: oncology

Side effect

One of the little ironies of taking thyroid hormone replacement is that it needs to be taken every day. And, if you happen to forget, you may find yourself with some symptoms, the two most interesting of which are:

* Feeling very tired or sluggish
* Problems with memory and thinking

This means that the 15th or 20th time you think, "There is not enough coffee in the world" it might dawn on you that you've felt this way before, and it was when you hadn't taken your medication. And so you try to remember if you've taken it. Good luck!

Labels: oncology

Schroedinger's Cat

A friend told me that her child was undergoing a test that I've had done, but she was staying in complete denial. Denial is a great place--it's where the cat is simultaneously alive and dead. I (as I've said before) want to be surprised, utterly and completely. I want to be able to never see it coming before it hits me over the head.

My longest and most deliberate visit to Denial-ville was right before I was officially re-diagnosed, after the PET scan and manual exam showed something 'suspicious'. I latched on to the excuses offered up by the doctor as to why the scans and exams were showing something. Maybe I had the flu--the totally asymptomatic kind. Maybe it was the yoga I was doing! Nothing could dissuade me; in my mind it was all going to work out fine. I even thought that maybe the test results had been switched! The alternative was too terrifying, that if it had come back I would have to have a bone marrow transplant. And it ended up that it did come back, but I didn't have to have the transplant, so I saved myself some worrying.

My friend's trip to Denial-ville was even more productive--her daughter ended up not having the test because whatever it was resolved itself. Here's to Denial-ville!

Labels: Kidding Around, oncology

Survivors Focus Group

Stanford ran a Hodgkin's suvivor's focus group this weekend, and I went. My doctor called me herself to ask if I'd go, and I have to say, that's not a voice I want to hear on my answering machine. I'd have gone anyway--I'm weird like that. Is it the marketing background (professional courtesy)? Or the hubris that *everyone* needs to hear my opinion.

So I like to think I'm good at these--what do you need all these other people for, I'll tell you everything you need to know--but I'm probably a real pain in the ass. I have to say, I'm the only one in my group who got a laugh!

Some good things were said--we all concurred that we were very vague on our treatments--how many rads of radiation, drugs for chemo, etc. And this led to issues with what we should be looking out for now. One guy said he'd heard that survivors were more likely to get squamos cell lung cancer, to he was being tested. Another guy said his baseline EKG showed signs of heart trouble. This is when you could see horrified looks around the room. One woman had just heard she should have been wearing sunscreen after all the radiation she'd gotten (as another man pointed to the patches of scars on his neck where he'd had suspicious patches removed recently), and at least I could feel superior to her. I may not have known about the lung cancer or heart troubles, but I'm wearing the sunscreen.

At one point a couple of the oncologists came in (they were monitoring the whole thing) and explained that we had all been given details on the short and long term effects of our treatments before we were given the treatment. I *think* I laughed, bitterly, out loud. The moderator asked me to explain and I said that when the choice is death or something bad at some point in the future, there's not much choice. I'm happy to have these problems, given the alternative, but how can you expect me to remember exactly what they are?

At the end, they gathered us together for a group photo. I was wearing a new shirt and new shoes, so I dallied to ensure I'd be at the bottom of the stairs, right in the front.

Labels: oncology

F*@& Me, I Passed

I went to the oncologist last week, prepared for this visit where I'd hear how my thyroid is failing and I'll need to start taking synthetic stuff. I had my tale of woe about how I'm tired and can't lose weight but otherwise doing okay all ready. But things didn't turn out the way I'd planned. It turns out I passed my thyroid tests--I am back in normal range.

Huh?

I guess now if I want little pills that will give me energy and help me lose weight, I'm going to have to turn to amphetamines. But first, I'll go see my internist to get another opinion. She looks at all of my test results and says that everyone's thyroid levels fluctuate, and that if mine were failing my test results wouldn't be 4.something, they'd be 40 or 50. Come back when they're that high, she says, and we'll talk. You're thyroid isn't failing.

Labels: oncology

Playing the Cancer Card

This is one of the best: State Sen. Carole Migden revealed for the first time Wednesday that she has been battling leukemia for nearly 10 years and said the medication she takes could have been a factor in her erratic freeway driving last week that the California Highway Patrol is investigating.

Talk about a get-out-of-trouble-free card!

Labels: oncology

Miriam Engelberg

Reading books about cancer experiences is like gawking at a car accident--I just can't help myself, but I might end up seeing something I really didn't want to.



I found Miriam Engelberg's book, "Cancer Made Me a Shallower Person: A Memoir in Comics" at the library and checked it out. It's great, but I had that survivor's insouciance about halfway through--is that all their is? Is the last half of this book going to be all about how cancer made you a better person who stops to pet puppies and smell flowers and accept the deeper meaning of the cosmos?

Why, no! The last half of the book is about how the cancer came back and killed her! Don't I have egg on my face!

I can see the gaps in the cartoons--how do you kvetch about losing your hair due to radiation to the brain when you'd gladly trade hair for surviving? It's a lot harder to be funny the second time around, especially when your prognosis is grim and none. The book doesn't tell you how it ends, but she died after it was published.

Labels: oncology

T I R E D

Asking someone if they're tired can be a tricky question. Who isn't? Only someone straight from the spa or a weekend away can admit to being well-rested. For anyone else, it's like admitting you're not busy--something shameful.

But the language is also missing. Like the many words for snow the Eskimos have, we need more, better, words for tired.

There's the red-eye tired, when you've been up all night. The good tired, when you've worked out or exerted yourself. The chemo tired, which you know won't go away no matter how long you rest. And the too-tired-to-sleep when you're all kinds of tired. And the adrenaline-fueled, no-way-I-can-really-sleep tired of the parents of a newborn.

But am I tired? More than before? Less? Couldn't tell you. The joys of a slow decline! But I do think longingly of naps, I do go to bed when the kids do about once a week, and I do self-medicate with an afternoon cup of coffee--how else am I going to remain cheery at those 4:30pm Friday soccer practices? A caffeine buzz is the only way I won't turn on Conor and say, "I didn't come here to see you cry, I came here to see you play soccer--get out there and play!"*.

Maybe I need to go back to the oncologist early and tell her that I'm yelling at my kids more because I'm so freaking tired all the time.

*Yes, I have said that. But he was crying because he was wrestling with another kid and got whacked in the head. And I had already told both of them once that we came to play soccer, not horse around.

Labels: oncology

Good News, Bad News

I had my latest oncology visit, a six month checkup. It was all cheery and happy, and even the phone call I received later that night telling me that my thyroid was failing was cheery and happy-sounding. "But we expected that", trilled the nurse, "What with all the radiation you had." Well, I didn't expect it, but then again, it's always better to be surprised than worrying about it.

Here are the symptoms I was asked during my visit if I was experiencing:

• Fatigue - I have two children and turned 40. OF COURSE I'M TIRED!

• Difficulty losing weight - Yes, I can't just wish away my muffin top.

• Change in menstrual cycles - I was on birth control for what, 16 years and then I had two children and chemotherapy in between. How am I supposed to know what a normal cycle is?

So I go home a Google the rest of the symptoms, courtesy of the Mayo Clinic:

• Dry hair/hair loss/dry skin
• Cold intolerance
• Depression
• Irritability
• Memory loss
• Decreased libido
• Constipation

Why isn't there an easily recognizable symptom, like peeing blue? Something definitive, rather than a list of complaints that if you went to your doctor with they'd tell you that they were just that--complaints--so shut up already! And I know that's what they'd say because a friend of mine went to the doctor with that very list of complaints I was asked about and said she thought she had thyroid problems and the doctor nearly laughed at her. "I'll do the blood test anyway, but you don't have a thyroid problem. You're just getting older."

And going to an oncologist and complaining about being tired is, well, just not done. Their attitude is that if you're alive, you've really got nothing to complain about. They may not come right out and say that, but when you're walking through a waiting room full of cancer patients, you lose the nerve to tell the doctor that you're tired, can't poop, and your hair and skin aren't as lustrous as you'd like.

So now I know why I had to have my OB/GYN test my thryoid levels throughout my pregnancy. I thought they were being super-safe, but they were waiting for that other shoe to drop. My thyroid indicators are low, but not low enough to start thyroid replacement right now. "We'll probably start you after your next visit in June, after we test you again", says the nurse. But what if I need replacement therapy before then, I ask. How will I know? Oh, she says, I'm sure you'll be fine. See you in June!

Labels: oncology