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.

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!

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.

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.

Okay, here goes…

This is about chemotherapy, but it’s also about everything that relates to it.  That includes healthcare concerns, insurance coverage issues, drug company priorities, the people who care for us – doctors, nurses, pharmacists, etc. – and the people who live with us, or who just show up at the right time and take us out for a drive to the ocean.

Whoopie Goldberg said on THE VIEW this morning (I’m quoting loosely) apropos “American Idol”, ‘It’s not about the story, because everybody has a story.  It’s about the talent.’  And I think she’s right, in the instance of a television show.  But when it comes to chemo, the story DOES matter.  Our stories have within them the sparks, the words, the experiences that other people can take and use, to help them get through, or handle what can be a stressful, painful, confusing, frightening period in their lives.

I’d like to make this blog a forum for topics that matter to all of us. For example, as soon as I can get to it, I’ll post the disgusting experience I had at a well-respected medical facility, when I went to their ob-gyn clinic for a consult.  I’ll be doing it so that other women will (a) never go to that institution, if they can possibly avoid it, and (b) so that we can figure out in advance what we will and what we won’t tolerate, in terms of patient care.

I plan to blog every day.  And I would be pleased, encouraged and inspired if you tell me what’s important to you, so we can talk about it.