Oncology Nurses

March 12th, 2010

I talk about this in my book, but you can’t say it too often.  Oncology nurses are the most wonderful people in our chemo universe – in many ways, moreso than our doctors.

I remember one day during treatment when I happened to glance up from my newspaper.  Across the room, but very quietly, a drama was taking place.  I saw a group of nurses gathered around a chair, a lot of activity going on…and then the paramedics showed up.

Someone had a bad reaction to one of the drugs.  The nurses were not only “there”, they were calm, competent to handle the crisis, reassuring to everyone else (because seeing that happen to somebody next to you getting those powerful drugs, can blow you out of your chair).

You can’t just count on training, to be a good oncology nurse.  There are other ingredients, having to do with character.  Healers are special in every arena, but in that treatment room, they personify the word “hero”.  Day after day, they see people in pain, confused, frightened, angry.  They form attachments to their patients, patients that often don’t make it.  They absorb all of this, plus whatever dramas are going on in the facility where they work, and somehow they still always step up, they always have the right words to make the experience easier.

From me to them: Oncology nurses of the world, you are truly heroes.

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A word about “I’m Hot!…and I’m Bald!”: CHEMOTHERAPY FOR WINNERS

March 12th, 2010

Yesterday I got an email from a friend I hadn’t heard from in about a year.  She’s in the hospital, having just had a hip replacement, the result of chemo treatment for cancer.  Last month, I had a hysterectomy, the result of the chemo drug I still take.  The point: chemotherapy isn’t just about the time you spend in the chair, or the pills you drop for 6 months.  It has an afterlife that can go on for years.  Side effects aren’t just nausea or anemia, they’re hip replacements and hysterectomies.

I walk up a real mountain almost every day, most of the time carrying a load of groceries.  I break a sweat almost all the way up that climb.  I also keep my muscles strong, because I have osteoarthritis.  I had arthritis before chemo, that’s why my knee blew out.  But was the arthritis exacerbated by chemo?  There’s evidence that there’s a connection.  Who else is wondering about this stuff?

The book is designed to support us through the entire chemo journey.  What I want to happen here is, I’ll read something and think “Wow, I never thought of that!”  That’s why your participation is so important.  You’re the person who’s going to put the relevant parts of your story into words that will help others figure things out.

And about the book: if I ever have to go through chemo again, a copy of my book will be tucked into my purse from the get-go.  Every time I open it, I see something that I forgot I wrote, something I’m glad I wrote, because it’s going to help me get through it, both physically and mentally.

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Race and Research

March 8th, 2010

Here’s what I know about race and research:

Blacks tend to need stronger dosages of anti-rejection meds, to protect transplanted organs; and

Triple negative breast cancer is more common in black women.

If anyone knows of any other race-related differences that chemo impacts, or if you can expand on either of the two listed above, please speak here.

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Blog Talk

March 6th, 2010

Maybe it’s dangerous to use this space to vent about personal issues, but I’m taking the chance on this one topic – language – because it keeps coming up.

On this blog, as long as participants don’t make threats, don’t incite anti-social behavior, don’t straight-out lie (I think that pretty much covers the “don’t”s), they can say what they want and use whatever language in which they feel comfortable expressing themselves.

When I was first diagnosed, I went on a live chat.  Within two sentences, I was thrown off.  I was so naive I thought there was some mistake, so I went back on.  This time, I was thrown out again – but not before someone else made the comment “Why is she getting thrown off?”  I didn’t swear, I didn’t do anything un-pc, I just expressed a point of view that the Mean Girls didn’t like.  It was like being back in high school.

This week, a site I visited posted a comment from somebody who took offense at another person’s jokey response.  As a result, the Insultee asked the site to somehow block the Insulter’s messages from coming through to her email.  Quoting Whoopie Goldberg again: W…T…F!

We’re all adults here.  The point of this, or any forum, is to feel free to express opinions without censure.  I’ve worked in the media for over 50 years.  I was in the house the day Kennedy debated Nixon and changed the face of politics.  After these many years, I’ve become attuned to the subtle subtexts of phrases that many people take at face value, as well as the ways in which we’ve limited communication by insisting that nobody be “offended”.  I find that to be one of the greatest offenses of all.

Anyone who wants to voice an opinion here is not only welcome to do so, he or she is encouraged to, using whatever language they choose.  If you agree, fine.  If you want to expand on something, go for it.  If you’re in a contentious frame of thought, let it fly.  If you have a question, I’ll find the answer, or a range of answers, so you can decide for yourself…

You get the idea.  Just participate!

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Mammography and Politics

March 3rd, 2010

I actually think that politics has a hand in all human interaction, so for me it’s not much of a stretch to think the changing guidelines for women with regard to when to start mammograms to screen for breast cancer is benefiting some political agenda.  Because it sure isn’t benefitting women.  Trouble is, I can’t figure out why, say, insurance companies would support the concept of women being screened later.  If cancer is found later, the cost of treatment goes up…unless they’ve crunched the numbers and discovered that the number of women who would be sacrificed by later mammograms is statistically insignificant to the total picture.

Anybody have any ideas?

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Aspirin and cancer

March 2nd, 2010

A recent study of 4000 nurses who had been treated for breast cancer at least 12 months earlier, suggests that low dose aspirin can have a positive effect on reducing reoccurrence.  It’s a good study, but it isn’t a clinical study, with the very stringent controls atttached.

This isn’t the first indication that aspirin may have a beneficial effect with regard to cancer – not just breast cancer, but colon cancer, as well.  I heard a similar buzz a couple of years ago, so I started on my own, taking low dose aspirin.  The problem was, I started bruising.  Maybe the dosage was still too high – I was taking what used to be called “baby aspirin” – but clearly, my body was having issues with regular usage, so I stopped.

I asked my nurse-practitioner what my oncology group thinks.  They’re not recommending it.  They’re not saying “don’t use it”, but they’re saying something along the lines of if you want to try it, you’re on your own here.  They’re waiting for clinical trials.

I’m not wedded to doing only what’s recommended by the results of clinical trials (or I wouldn’t be recommending marijuana for nausea and pain relief), but if I try the aspirin regimen again, I’ll bear in mind my oncologist’s take on the matter, and if I start bruising again, I’ll drop it.

Anybody out there have thoughts on this?

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Fear, the great motivator

February 28th, 2010

Lemme say this off the top: I have nothing to say today that has any direct relevance to chemo.  The fact is, I’m afraid if I don’t blog relatively often, like a few times a week, I’ll blow the whole thing off, like I did the first time I set up a blog.  Yes, this is a reincarnation of a failed blogging attempt a couple of years ago.  Right now, I’m talking into the void.  If anybody is out there, they are not making themselves known.  It’s exactly what happened before, and that’s why I stopped blogging.  I can talk to myself without a computer.

There’s another drawback to staying too long at the fair, so to speak.  Blogging about illness can, if not done judiciously, be a bad thing.  Dwelling in the land of the sick, even if we are sick, ourselves, is something we should all control very carefully.  Thinking about it can turn unhealthy and counterproductive.  Here’s what I mean:

I get a targeted health-related newsletter that I won’t name, on a daily basis.  I signed up, but when I tried to get out of it, none of the links worked (on purpose, maybe?).  At first, I started getting involved.  I wanted to answer every frightened person who posted, I wanted to help.  I still do, and occasionally I offer a comment or opinion.  But if I go there every day, or if I spend too much time there, I feel depressed.  Almost everybody on the site is sick or caring for someone who is, so depression is a logical response.  But luckily, I seem to know my limits.  I don’t go there every day, I only go on impulse, I don’t get sucked in to getting more involved than I can handle.

Partly, I’m responding this way to that site because personally, I don’t care what drugs my doctor chooses to treat me, as long as they work.  So far, she’s been right.  So my thinking is, she’s doing her job, and I’m doing mine, which is to try to stay vigilant and live as healthy a life as I can without giving up chocolate, fat, sugar… Well, those are my choices!

Fear can make us vigilant, or it can dominate our lives and make us unable to make judgments or take actions.  It’s vitally important that we know the difference, and act accordingly.  That’s how we keep our sanity and a good part of how we maintain our health.

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Not every day is a blog day

February 23rd, 2010

I’m feeling my way with this blogging thing, but at this point, one thing is clear: I don’t have enough to say, even about chemo, to do this every day.  If the site develops into a forum where all the topics relevant to chemo are discussed, there might be reasons to post on a daily basis.  But I don’t want to turn this blog into a ramble.

Today, though, if anybody actually reads this, there’s a wonderful 3-day series on the development of a treatment for melanoma running in The New York Times.  Today is Day 2, and I’m looking forward to seeing how it ends.  One conclusion I can make already: we could use more dedicated researchers like Dr. Keith Flaherty!

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Tamoxifen-related uterine biopsies

February 21st, 2010

I wish I didn’t have to keep telling this story, but the problem is that women don’t even know there IS a problem until they’re lying on a table with their legs spread, screaming in pain.  It doesn’t have to happen that way.  All you have to do is say “I would like an anesthetic.”  If they try to talk you out of it, tell them that’s the only way you’ll consent to the procedure.  If they still say no, find another provider.

Can you imagine a man having a prostate biopsy without an anesthetic?…Nor can I.  And yet the head of the Ob-Gyn Department at UCLA told me that at their clinic, biopsies without anesthetic are “the standard of care.” UCLA is not the only perpetrator of this kind of torture; I’ve heard from a number of women that they had the no-anesthetic biopsy experience, and it was excruciatingly painful.

It happens because women don’t know they have to ask for an anesthetic.  Apparently, uterine biopsies aren’t all that common.  But the drug tamoxifen, which is often prescribed for women with estrogen-positive breast cancer, can cause uterine problems, even cancer of the uterus.  That’s where the uterine biopsy entered my life.

UCLA is a State of California institution, yet their Ob-Gyn clinic has the option of rejecting Medicare and MediCal (but that’s another issue).  If you have acceptable insurance, you can have your biopsy at UCLA as a day patient, complete with anesthesia.  You don’t even have to ask, which is a good thing, because who thinks of asking if a hospital is going to inflict that degree of pain?  If you’re a clinic patient, the procedure is not accompanied by anesthetic unless you ask, and even then, I was told by the chief of the Ob-Gyn department that he “guessed” I could have an anesthetic, if I insisted.  But only if I insisted.  Because they didn’t even get enough tissue on the first go-around.  They actually thought I was going to come back for more of the same.

I had an illegal abortion in the 1960s.  It was done on a Wednesday afternoon in Chicago, by an ob-gyn, in his office, without anesthetic.  At the time, there was good reason.  If anything had gone wrong, I would have to have taken myself to a hospital emergency room, because if the doctor who performed the abortion admitted me, he would have gone to prison.  I made the deal willingly.  It hurt like hell, but at least I was ready for it.

I never thought I’d ever experience that degree of pain again, but the uterine biopsy I had at the UCLA clinic brought it all back.  They can call it whatever they want, but I call the procedure a D&C without anesthetic, the same as that abortion.

I tried to contact someone at the Komen organization about this, because they certainly have the media contacts to make this a front-burner issue, and this procedure is breast cancer-related.  The Komen people never acknowledged my calls.  But my failure to get anywhere with them shouldn’t dissuade others from trying.  Or from reaching out to any media contacts you have.  There is no excuse for causing women the kind of unnecessary suffering they’ll experience, if they don’t have an anesthetic when they have a uterine biopsy.  If any hospital claims that’s not part of their standard of care, they should be shamed into putting women before the few dollars they save by denying anesthesia.

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Organ transplants

February 20th, 2010

My web guy is out of town, and I haven’t figured out yet how to just post an entry. You’d think there’d be a button that says “new entry”, but no. I couldn’t find anything but a reply to my last blog. So I’m just going with that…

I want to talk a bit about organ donation. The word is slowly getting out that people are dying waiting for organs, and that there are ways to donate that encourage others to donate to people they don’t necessarily know. But here’s something they don’t tell you. And since doctors screwed up a perfectly good kidney that was donated to a friend of mine, I never assume that the medical profession is on top of every issue.

I offered a kidney to that friend who needed a second transplant. Fortunately, somebody else got there first, and her kidney was successfully transplanted. I say “fortunately”, because at the time I volunteered, I hadn’t yet been diagnosed with cancer. If my kidney had been transplanted and the cancer hadn’t been detected, it would have been the gift that kept on giving.

My point: if you donate any organ – and I hope that you at least consider doing so – make sure you ask the doctors to check you out for anything that the transplant could transfer to the organ recipient.

I’m no longer eligible for organ donation. Or…let me put it this way: I wouldn’t be comfortable donating any of my organs, no matter what doctors might say. One cancerous stem cell in the body of someone with a compromised immune system?…I wouldn’t want to take the chance.

If anyone out there has donated an organ, I’d really like to hear from you, particularly about the way everything played out after the transplant. Did you meet the recipient? Did the organ “take”? Would you do it again? Hopefully, your experience will encourage others to give the gift of life to someone else.

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