Ship's Blog: April, 2006

You ever find out that you got something so wrong - maybe a song lyric or a book title - that you feel compelled to share your embarrassment with everyone else?

Well, let me air my embarrassing misunderstood moment. I've been watching British decorating shows for maybe seven or eight years, and all this time, I've been wondering what a certain color was supposed to be.

Karkee?

Car Key?

Karque?  Read more »

My friend Joni, up in Vancouver, is a real sweetheart. When she found out about my breast cancer, she wanted to do something to help. So she bought three of Canada's commemorative pink ribbon coins - one for her, one for me, and another for our friend Lisa in South Dakota. They are talismans for us to keep for my healing.

Isn't that the coolest thing? It wasn't even easy to do as the retailers refused to sell more than one to a person, so she had to rope others in to get them. I received mine recently and I think it's wonderful. Thank you, Joni!

Recently, I found a statistic in the Beating Cancer with Nutrition book that said a breast cancer diagnosis takes 19 years off a woman's life. 19 years! It doesn't give any background for that calculation, which I assume is an average, it just throws it out there like a sizzling hot meteorite. Ouch!

Personally, I decided that I get to add two years to my life, just from being pissed off and ornery as a result of the diagnosis.  Read more »

I went into my office this afternoon to scan something. All of a sudden, the system became unresponsive. I restarted the computer and the motherboard said (yes, mine speaks), "CPU FAN FAILED!"

Oh. My. God.

You know how when someone's heart stops, you have only a certain amount of time to revive them before they become brain damaged? That's how it is with a CPU fan. CPUs run so hot that they must constantly be cooled or they can burn up and become useless. Without a CPU-that big chip on the motherboard-the system is nothing.  Read more »

Last week I had to fill out a medical questionnaire for a new doctor. I swear, most of those questionnaires are designed to make me crazy. Am I the only one who reacts badly to the questions? Oh, I'm not talking about questions about my health history or personal thing. I'm talking about the basic info gathering that they usually put at the top!

My first issue is marital status. Now, you can probably predict that I'd have a problem with that because I'm a lesbian. At many offices, even today, the only options are single, married, divorced, and widowed. It's a complete heterosexual continuum (at least, as declared by the federal government) where there is no acknowledgment for other relationships. That alone would make me annoyed.  Read more »

Whoever it was at the hospital who checked off "resume strenuous activity in 2 days" on the release instructions needs a talking to. I am wrecked. I'm not even allowed to take my first shower until tomorrow morning. What am I supposed to do? Go for a run immediately afterward?

As expected, I have three incisions; one on each breast one under my arm for the lymph node biopsy. They definitely hurt, but it turns out that Vicodin does a good job of relieving the pain. I was surprised at that, because Vicodin did little for my frozen shoulder and other pains I've had. I have never been much of a fan of that drug, but given that it's working now, I will take it.  Read more »

Lately I've become quite addicted to As Time Goes By, a 1990s British sitcom staring Judi Dench (Dame Judi!) and Geoffrey Palmer. BBC America is rerunning it from the beginning, so I'm TiVoing it to ensure that don't miss an episode.  Read more »

This morning started, bright and early, registering for surgery at UCSF. The financial coordinator seemed very worried when she filled out the paperwork; it turned out that they didn't have my insurance update. My self-employment insurance is THAT BAD...people frown and shake their heads when they read the benefits! Well, good thing I now have new insurance, eh?

I first reported to Radiology to have the wires inserted into my breasts, to guide the surgeon to the tumor and biopsy locations. Lovely, I know. I bet you're wishing I would say more about it, in detail. It's your lucky day, because I will!  Read more »

Today I received three bras via mail order, all without underwire. They are in different sizes because when you are super busty, you find out that the cup sizes are not consistent across brands. I don't have a good history with bras that don't have underwire. It's not that I like metal shoved up under my breasts, it's just that bras tend to fit me badly without it.

With some trepiditation, I struggled into the first bra. It both flattened and thrust out my breasts in an alarming way, making them look like flying saucers. This reminded me all too much of a bra I tried on 20 years ago, in an experience memorable enough to remain burned into my brain.  Read more »

One of the unfortunate truths of the universe is that we don't always get to deal with nice people. Some people are selfish, nasty, or simply have no empathy. When you are forced to deal with people like this-maybe it's your boss who is toxic, or an in-law, or a repeat customer-it can feel like you get doused with cooties after each interchange and there is nothing you can do to get rid of them.

That's why I developed the Hokey Pokey method of ridding myself of cooties.  Read more »

For my lumpectomy pre-op appointments today, the first part was done in the hospital wing  while the second was done in the Breast Care Center, which is a more contemporary wing with hip-happening art and better lighting.

Before lunch, they took my blood and, um, other things, quizzed me about my health in preparation for anesthesia, and had me get a chest X-Ray. My blood pressure was very high, which is not surprising given how hospitals make my eyes dash about madly in an attempt to find the exit. Apparently, I appear calm and self-possessed, but my vital signs tell the truth about how I'm feeling.  Read more »

After the pre-op appointment today, I tried to mail my taxes in San Francisco. I wasn't able to, though, because the post office on Geary doesn't seem to have drive up mailboxes. You have to park to mail a letter and of course, on tax day, there was no parking. I decided to mail it back in Concord on my way home.

About five miles from the exit, I turned on the radio news. I never listen to radio news anymore, so I'm not sure why I did that. As I approached my exit, they interviewed a tax preparer. As she was wrapping her interview, she shared a few reminders including, "Be sure you signed your forms."

That, of course, is when I realized that I forgot to sign mine.  Read more »

My breast surgeon arranged for me to meet with a gynecologist today, one who works in partnership with the UCSF breast care center. Her concern was that if ovarian cancer might run in my family (I'm not sure) she wanted me to be screened. The gynecologist's office asked that I bring the results of my last PAP smear with me. Toward that end, I faxed a request for my medical records to my regular doctor's office last week, letting them know that I would come by this morning to pick them up and to call me if there were any problems.

You just know this didn't work out, don't you?  Read more »

UPS delivered an Amazon.com order that had two cool things inside.  Read more »

It's hard being stuck in limbo and in terms of my breast cancer journey, that's exactly where I am. I'm like the Tarot card "The Hanged Man," suspended upside-down. Waiting. It's going to be that way until after surgery when we find out the status of my lymph nodes (to see if the cancer has spread) and get the pathology report describing important attributes of the cancer.

I can't help but be aware of all the possible variables that could come into play. The best case is that this is a small, non-aggressive tumor and my lymph nodes are clear. That would mean six and a half weeks of radiation after my lumpectomy.  Read more »

When it comes to testing for known gene mutations that influence breast cancer, there's only one game in town…if you're in the U.S. That's Myriad Genetics Lab. They hold the patent not just on the BRCA-1 and BRCA-2 gene testing, but on the gene mutation sequences themselves! Did you know you could patent something that already existed? I didn't!

I say they're the only game in town in the US because in Europe, Myriad's patent (at least for one of the mutated gene sequences) was not held up in opposition. They won't acknowledge the patent, perhaps just because they have some sense, but also because they feel that allowing Myriad a monopoly on testing is a impediment to patient care.  Read more »

Do you ever feel like your doctor just doesn't understand how you feel, no matter how you try to explain it? You're trying to describe the worst pain in your life and they tell you to take two Tylenol? Or maybe you have a condition that's difficult to describe to someone who has never been through it, and you need your doctor to understand the severity.  Read more »

Well, help may be on the way.

I met with the genetic counselor today for about an hour and a half. She had the 22-page questionnaire I filled out and she had started drawing a genetic family tree. She asked me more questions and made notations. Based on my history, she said we certainly had cause to do genetic testing, but that she needed to talk to me before we went ahead. Not everyone truly wants to know their genetic status. In addition, they want to get an idea of how you think it might affect you if you found out you were a carrier.  Read more »

People tell me that it's great that I'm so good at research, especially given what I need to learn about my diagnosis and treatment, but the truth is that research can be dangerous. There are no custom filters to sift out the information you really don't want to read.

This afternoon I had a surfing accident when I pulled up a medical article about people with certain types of cancer. It described how some people, particularly those with breast or lung cancer, will survive their primary cancer, only to have it spread to their brain later on. One of the doctors quoted said that if he was diagnosed with one of these cancers, he would immediately demand to get a brain scan.  Read more »

Because I'm apparently twelve years old, the title of "genetics counselor" makes me giggle. I can't help but imagine myself sobbing against someone's shoulder, wailing, "Oh, why are my eyes green? Why couldn't they be blue like my brother and sister? Please tell me why I must shoulder this burden alone!"

Yeah, okay. Anyway.  Read more »

I've been spending the weekend reading up on the issue of genetic risk for breast cancer. This is about the BRCA1 and BRCA2 gene mutations that have been linked to a significant increase in breast cancer risk. For women who test positive for one of these gene mutations, their risk of contracting breast cancer in their lifetime can be as high as 85%. After getting breast cancer, the risk of later getting cancer in the other breast can be as high as 50%. In addition, BRCA1 and BRCA2 gene mutations are also linked to a heightened risk for ovarian cancer, as well as some other cancers.  Read more »