Ship's Blog: May, 2006

My chemo teaching appointment for today (by the way, isn't that poor grammar? Shouldn't it be chemo education?) was with a chemo advice nurse at the Breast Care Center. However, my buddy nurse saw me on the schedule and offered to handle my appointment.

She gave me a bunch of handouts that described general chemotherapy side effects and those specific to the chemo drugs I will be given, then she went through everything step-by-step. Of course, everything is color-coordinated and 3-hole punched to fit into the chemotherapy tab of my "You've Got Cancer" binder.

As she explained it, for each infusion appointment I:  Read more »

Unbelievably, in the past few days I've bought even more wigs on eBay. These are the really fun ones.

This one is an extra long lavender wig that reminds me of the hair color I wanted as a little girl. Of course, my desire was impacted by my favorite Liddle Kiddle doll (Violet, pictured right).  Read more »

On a lark, I decided to do an eBay search on wigs and I found out that you can get all sorts of brand new wigs from Hong Kong. There were some pretty cool wigs listed and their started bids were dirt cheap. It looks like the wig manufacturers in China and Japan are selling the wigs directly, as they come sealed with tags.

I decided, what the hell, I'll place ridiculously low bids on a bunch of wigs and see what happens. I'll be out bid but that's okay; I'll get an idea of what these auctions end up closing for. By ridiculously low, I mean like anywhere between 99 cents and $10.  Read more »

This afternoon, Kathy and I had back-to-back appointments for eye exams at Costco. We sat in the cramped, makeshift waiting room filling out forms while people purchased big screen TVs 20 feet away.

As with most doctors' forms, the paperwork that I had to fill out before my eye exam asked questions about my current state of health. One of the things that happens after you get cancer (and probably other serious diseases) is that you have to keep telling people about your diagnosis. Most of the time, though, you'd really rather forget about it, and writing it down is like reminding yourself. I sort of resented having to state yet again that I had breast cancer.  Read more »

Today was the day for my MUGA (multiple-gated acquisition) scan. It's a heart scan that takes a color movie, in a sense, of your heart working and assesses how well it pumps blood. They do this before chemotherapy because some chemotherapy drugs are cardiotoxic and they need to monitor your heart. 

My appointment was at the Parnassus campus of UCSF. The comprehensive cancer center is at Mt. Zion, another UCSF hospital, so I don't spend much time at Parnassus. At Parnassus, you know you're at a teaching campus the second you get out of the car, what with all the students running past you to get to class or grabbing a quick bite at one of the restaurants at the student union.  Read more »

I spent today wound tighter than a fishing reel prepped by a crack addict. I just wanted the oncologist to call so we could talk about chemo and get it over with.

I hoped the doctor would say this is all a mistake and I actually didn't have cancer. Maybe it was a hairball.

Alas, no luck.  Read more »

I have been waiting for the medical oncologist to call ever since yesterday morning's conversation with the nurse. Today, I shoved my cell phone in my cleavage so that I could walk around the house wearing pants without pockets.

"Are your breasts ringing?"

"Oh, that's just their oncologist on the line, hold on...."  Read more »

I had to call the nurse at the cancer center for some advice. She's the one I get along especially well with. She also happens to be the nurse who sees all the test results. When she asked if I wanted to hear my Oncotype DX results, I tried not to shout when I answered, "YES!"

With the Oncotype-DX, each person is assigned a score that maps to their risk of developing metastatic (stage IV) cancer over the next 10 years. A score of less than 18 is considered low risk, representing 51% of the women studied. Scores of 18-30 are intermediate risk, accounting for 22% of those studied. Anything over 31 is high risk, and that's 27% of the study participants. I had agreed with my doctor that if I scored above 18, I'd do chemotherapy.  Read more »

On the way to class on Saturday, I told Kathy how now that I've paid almost my calendar year out-of-pocket maximum with Health Net medical insurance, the next thing they are sure to do is raise my rates.

When we arrived home in the late afternoon, the letter from Health Net was in the mailbox. My rates go up 15% on July 1^st. Gosh, thanks, Health Net!

I'll be cancelling that insurance very soon. I know that means that I risk never being able to get self-employment medical insurance again (now that I have a cancer diagnosis on record) but I can't afford $4000/year or whatever it will be for secondary insurance. And sucky secondary insurance, at that.

Kathy and I spent this weekend in a fabulous art class. We took Acrylic Surfacing with Tesia Blackburn at the Walnut Creek Civic Arts Education program. Tesia is a Golden Working Artist (Golden being Golden Acrylic Paint, my favorite brand of high-end artist acrylics). As such, she used Golden products for all of the techniques she taught in the two-day workshop. That was great, because that's what I have my studio stocked with. Imagine taking an art class where you don't have to buy anything afterward! I don't know about you, but it rarely happens to me.  Read more »

My friend Maria was watching the Will & Grace series finale last night (or a recap show beforehand, I don't know) when they showed a clip of that episode where Grace is wearing a water bra and it springs a leak. She said it made her think of me.

Very apropos for today, as this morning I was sitting in front of the computer, working away, when suddenly I looked down and noticed that my shirt was soaked around my breast. I sprung a leak yet again! It's like it never ends. Just when I think I'm safe to go out in public, I'm not.

It's a wonder I get anything done. If someone were to ask me, "What do you do for a living?" I'd have to answer, "Well, pretty much I just tend to my breasts."  Read more »

I had an odd conversation with my father on the phone today. He told me that he and his new wife really want to visit, as he still hasn't seen our new home. (He's about an hour or so away by car.) He knows that I am waiting to find out whether or not I'm going to do chemotherapy, but I guess he didn't realize that would be a factor in terms of me being prepared for a visit. So I let him know that while a visit sounded nice, if I do chemo, I know I'm probably not going to have the energy to prepare the house for company. (Because, honestly? If I show a relative my house for the first time, I spend at least two days cleaning everything in sight.)  Read more »

His response was, "Well, you know, time is ticking away."

I slept in today because I was so tired and felt crappy ... then I got started right away on phone calls and stayed in my jim-jams all morning. At noon, I realized I had better get presentable quickly as I had someone coming to do the weed removal estimate between 1-4 pm.  Read more »

There is a big bru-ha-ha on one of the breast cancer discussion boards right now. You see, yesterday Tony Snow was talking on Good Morning America about his experience with colon cancer. He made the remark, "This sounds weird to anybody who hasn't had cancer, but everybody who's had cancer says the same thing: 'It was the best year of my life.'"

Uh-huh. Let's just say there are a LOT of the women on the discussion board who are pissed off at Tony Snow.  Read more »

Today I met my medical oncologist at UCSF. Nervous about who I would get (after all, my surgeon wasn't exactly a match for my personality and she's the one who chose my oncologist) I did as much research as possible beforehand. What I learned gave me a lot of confidence – she appears to be very smart involved in lots of studies, and someone who has spoken at the annual San Antonio breast cancer symposium. But would we get along?  Read more »

Today I was scheduled for a pelvic ultrasound to screen for ovarian cancer. If you've been pregnant before, or had any issues with your ovaries, you've probably had this kind of ultrasound before. It's the one where you have to drink huge amounts of water, they scan you one way, you go to the bathroom, then they scan you another way. It's not my favorite test, and I feel safe saying that even though I've only done it this once.

The technician, who spoke with a thick Russian accent, exuded all the warmth of a refrigerator. When you are laying there so exposed, it would be nice if the person doing these things to you-things that in any other context would be horribly rude-would at least crack a smile. Oh, well.   Read more »

In researching my genealogy for my family medical history, I ended up looking at a lot of census records, trying to find who lived where and with whom. It's one of the best ways to get a starting point for tracking a family. I'm doing this research for a number of ancestors, and I must say that each time I find a match for a family, I'm excited.

For some reason, looking at the census records brought home some things I had learned years ago but never really thought about in depth. In particular, it made me my maternal great-grandmother, Maud, in a new light. I recall pictures of my mother as a child during the Depression, playing with her cousins and another boy she called Uncle Herbert. He was her age. Well, it turns out he really was her uncle.  Read more »

No kidding, my breast is now making noises. It sounds a lot like groaning and whining. It actually woke me up this morning. Not many people can say their breast woke them up with its carrying-on! I feel like whispering, "Hey, can you keep it down?" With my luck, I'll go out and in the middle of talking, someone will say, "Alix! Alix! I can't hear you over your breast!"

But, you know, if any one of my body parts has the right to groan and whine, it's my breast. Poor thing must think I have it in for it, what with the FNA and the surgery and all. I think it deserves my sympathy.  Read more »

Today was the big day: getting the results of my genetic testing.

The director of genetic counseling and a physician on staff met with me to discuss the results. Without making me wait for any disclaimers, they gave me the genetic report showing that I tested negative for BRCA1 and BRCA2 gene mutations.

Yay! Except...wait, what does that really mean to me?  Read more »

After my computer broke, Kathy talked me out of building a new one and into having someone else build it for me. Gasp! That's heresy! I've built my own systems for twenty years, and the one time I didn't I had all sorts of trouble.  Read more »

I spoke with a person at Genomics, the company that offers the Oncotype-DX test. They had to talk to me about issues of insurance cover and all that. She was saying that Health Net, which is now my secondary insurance, has paid for the test six times in the last 120 days. That means that there is a chance they will pay for the test for me. She said, "I see that you are almost at your $4,500 out-of-pocket calendar year maximum already, which means might pay 100%."  Read more »

Chunter

Dame Judi Dench has contributed today's British word of they, via the sitcom As Time Goes By. The boxed DVD set arrived today and so I'm on a bit of a bender. It seemed nothing could stop me from watching more of my new favorite sitcom. Nonetheless, as soon as I heard Jean scoff at Lionel, "What are you chuntering on about?" I paused the DVD player excitedly and went to look the word up.  Read more »

I have an idea for a collage. First, let me give the disclaimer that it may be a while before I can get around to it, so don't be looking for results soon.

I want to make a collage or an art book (of collages) featuring the health care providers who are guiding me through this journey. My idea is that I could do separate layouts, perhaps using a stripped-down children's board book as a base, for each doctor or nurse.

Starting with a photo of someone, I could do a mixed-media collage with paint and words and images...maybe even making each one into a goddess or other archetypal figure. I think my primary care physician, for example, is definitely Athena. It's an interesting thing to mull over.  Read more »

Disclaimer: Squeamish readers, move along to the next blog entry. Sorry.

You know how my breast has been leaking fluid since my surgery ? Well, now icky stuff has started come out of my incision. Ew, ew, ew! I have to sit down and take deep breaths with my head between my knees when I just think about it.

Last night I had to call the surgeon to ask her what to do. She told me to meet her at the clinic at 10 am the next morning when she would...last chance to skip this entry, folks...open my incision more and put a Q-tip in me to clean out the icky stuff.

Omigod!  Read more »

Disclaimer: Squeamish? If so, this is another blog entry to skip.

Yesterday I woke up at 5 am to a wet pillow. Ick! My breast keeps leaking from fluid build-up. I can't help but feel gross. I called the nurse for advice on what to do. She said that I have to just wait it out and recommend that in the meantime, I put maxi-pads in my bra to absorb any leakage.

Boy, do I feel sexy! Again, I am so glad that I work from home. Otherwise, this could be deeply humiliating.

Today is Kathy's birthday; she took the day off. I had made great plans for gifts that I would make for her, but what with surgery and all that, nothing actually came to fruition. Still, I wanted it to be special because ever since I've been diagnosed, everything has been all about my health issues. She needs some attention, too.  Read more »

Disclaimer: If you're squeamish (I am!) skip this blog entry.

Today was the post-op appointment with my surgeon. They set up the appointment so that first I would meet with the nurse, then twenty minutes later I would meet with the surgeon. Another nurse filled in for my surgeon's nurse, who was on vacation. She checked my incision and started to remove the stitches. I found out that the little kit with the tweezers and suture scissors is labeled "single use," so they have to put them in medical waste right away. I asked if I could keep them. That's when we found out we were both crafters and bonded!  Read more »

I was watching As Time Goes By over lunch today when I heard the perfect new term for my vocabulary. The character of Alastair breezed into a room, looked at someone wearing pajamas and said, "Jim-jams? At this hour?"

Stop TiVo! Jim-Jams? I'm in LOVE. Immediately, I do a search and replace in my brain, replacing all incidents of pajamas with jim-jams. It's vocabulary nirvana!  Read more »