breast cancer

Treatment Roundup: July

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July 1 – Chemo 16.21

We went to Monterey for two nights to give me a change of scene before radiation starts. Did a lot of walking yesterday (over 10k steps), which left me tired and sore.

Continue reading Treatment Roundup: July →

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breast cancer

One Month Post-Chemo

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I had my last chemo infusion on June 11th. Side effects I’m still having:

Eyes watering, especially when I first wake up. This is starting to abate: I no longer have tears streaming down my face every second I’m outdoors. Some women on breastcancer.org have reported that this clears up about 6 weeks after the end of chemo. Apparently it has nothing to do with having no eyelashes.

Weight. I weighed 145 pounds when I started chemo, weigh 143 at the moment. Lowest it got was 138, in April. At the worst of the chemo, I was eating less food by volume (smaller meals), but more calories, because fatty foods were the only ones that still tasted ok. Continue reading One Month Post-Chemo →

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breast cancer

Chemo and Menopause

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Many kinds of breast cancer are hormone-sensitive, meaning that they grow faster in the presence of estrogen and/or progesterone, which are naturally produced in the female body until menopause. When your cancer falls into this category, part of the aim of chemo (and the Tamoxifen I’ll be taking later) is to stop the body’s production of estrogen and progesterone. This means that you go into menopause, at whatever age you happen to be.

I had been in perimenopause (ie, on the way to menopause) for years. It’s  no fun. Symptoms include migraines, ferocious mood swings, insomnia, and hot flashes. Many women take hormone replacement therapy (HRT), which alleviates these symptoms by partially replacing the hormones that your body is no longer producing. I started HRT about five years ago.

Continue reading Chemo and Menopause →

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what I do

My History in Customer Service

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Note: I had largely forgotten about a review I wrote in 2010 of Tony Hsieh’s book Delivering Happiness: A Path to Profits, Passion, and Purpose. More importantly, I had forgotten that it included a history of my philosophy of customer service, which I think deserves separate billing. So here it is:

I have cared about good customer service, both receiving and giving, for a long time. Starting in 1993, I provided great customer service for Incat and Adaptec by being visible and responsive in early online forums (Usenet, email, discussion lists, newsletter). Eventually I was allowed to scale my efforts by hiring a couple of guys who could answer questions as well as I could. But there were huge obstacles to great customer service, such as the lack of communication and data-sharing between the internal groups at the company who dealt with customers. This siloing within companies seems to happen a lot and be considered normal, so it was difficult to get my colleagues to understand that customers neither know nor care about a company’s internal systems and power struggles. To customers, it’s all one big entity, and they are understandably frustrated when the customer service team doesn’t know what sales or support are doing or, worse, they all contradict each other.

There was a smart VP who immediately understood the problem when I presented a graphic showing all the different information stores at the company and how they did (and didn’t) connect to each other. He wanted to try to fix the situation, but soon we were all sidetracked by the spinoff of Roxio, which required us to build new systems and sites from the ground up. As webmaster, I spent 14 hours a day on that for many months, but (as I dimly recall – it was a crazy time) still tried to keep in sight my long-term goal of creating a great customer experience right across the company.

I was ahead of the curve. Long before “user community” became a fashionable term, I realized that our community of customers could help each other far more effectively than we could ever help them: there were simply far more of them than us, and they were using our products in ways than we couldn’t test in the lab. We just needed to help them to communicate with each other, and put some human intelligence into organizing the information they produced.

The kinds of online forums in widespread use today were not well known in 2000, but I designed some nascent social media features into the new Roxio website, and tried to make it a showcase for our users rather than just brochure-ware for our products. I also worked closely with our new tech support organization, trying to keep us all heading in the same direction.

For personal and professional reasons, I left that job in 2001 and went back to Italy (where my family was), so I never got to see whether my ideals of customer service were realized at Roxio.

A few years later, at TVBLOB, I chose “Director of Customer Experience” as my title because I hoped to instill in this new company, from the beginning, a culture of great customer service. We were trying to introduce an entirely new kind of technology to a mass audience, and I felt we would succeed or fail on how our end-user customers felt about us. This would, in turn, be a function of their entire user experience, from product interfaces to sales calls to technical support; it would be critically important to have all these areas aligned behind the same vision of how things should look to customers. I’m not sure whether this could have been achieved in that particular company, but personal and professional considerations took me out of that job before we even had end users.

In summary: I have long cared a a great deal about treating customers well, but realized that truly great customer service would require a corporate culture and mindset quite different from the ones I found myself immersed in. Though I tried very hard for years, I alone could not effect the changes needed. I was left with a vague hope that, somewhere, someday, some company might get it right, and I might even be part of making it happen.

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breast cancer

Chemo Roundup: June

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June 1

Another neupogen shot today. Basically all my joints and muscles hurt. Partly probably to do with lack of exercise but I’m too damned tired to move.

June 2

Aching from neupogen shots, and I’m afraid the sinus infection that came roaring back over the weekend may be moving into my throat and lungs. Have had mild sore throat and congestion, bit of a cough, from time to time.

June 3

Had to stop using the “best” vein in my left arm for blood draws a while back, because it has built up scar tissue and now hurts. As of today, the right one is just not giving any blood at all, even though she can get a needle into it without hurting particularly. Is that what it means to have a collapsed vein? white cell counts 31,000 (normal is 10,000), so won’t need neupogen shots this week (yay) Dr L can sign off on leave up to six weeks after chemo ends not sure if that has to be declared while I’m still undergoing chemo

Going on Leave

Hard decision to make, partly because, tired and sick as I am, it’s hard to make any decision, let alone one involving complex parameters, possible risks, and bureaucratic hoops to jump through. I think the American worker is trained not to ever let ourselves be vulnerable – we are a bullying culture, and the pack goes for you when your blood is in the water. And we get far less paid sick leave than other countries. I ended up going on leave effective June 4th.

 

later: Profoundly depressed and anxious. head hurts.

June 4 – 15.1

After infusion, B took me to SF to see Dr Johnson and get a culture.

June 7

Sinus infection as bad as I’ve had in years. Heavy green gunk coming out of my nose, general malaise and exhaustion. Hard to tell at the moment what is chemo and what is infection. My hands and feet are numb and tingly, that’s neuropathy. But the terrible weight in my arms and lower legs – taxol? infection fatigue?

June 8

Hot flashes come at night, which def does not help with sleep.

In the last few days, my arm and leg muscles are extremely weak and sore.

June 9

Muscle and joint pains, and this evening some sharp abdominal spasms. WTF. So tired of all this.

June 10

Mild (so far) diarrhea.

Dr L:

stay off work til July 6th – “You’re beat up at this point”

taste buds and GI tract can take 3-6 months to recover

blood counts ok, no need for shots

have port removed after mammogram, until then get it flushed monthly

June 11 – 16.1, last infusion

There is a nation-wide shortage of zofran, they were going to give me Aloxi instead, but that gives me terrible headaches. We took the risk of doing without, which I may come to regret, but I can always take a pill. Picked up a burger on the way home and devoured it, tasted pretty good. But not settling well. later – ok, no nausea. Just ongoing muscle pain (back, legs) and weakness. Ibuprofen doesn’t seem to do a thing for it

June 12

Decent night’s sleep, woke up once with a sweating hot flash. So far this morning feel pretty good.

(felt pretty good much of the day, then started having mid-back pain in the evening)

June 13

tired, hungry, irritable

June 14

woke up a lot with hot flashes, though not absolutely drenched – that happened once last week, otherwise not in many months noon – feeling strangely cold, with muscle pain – arms, legs, back

June 15 – 16.5

Had plans for today, but just putting laundry in was exhausting. Apparently I need to be less ambitious. mood swings. I guess menopause-related. gut has been sore for over a week, similar to when I was constipated, but I’m not particularly so.

June 16 – 16.6

side effects I still have:

  • running eyes (when outside)
  • running nose
  • mild intestinal cramps/spasms
  • hot flashes
  • waking up a lot
  • dry mouth
  • taste buds not working
  • muscle weakness
  • tingling feet and hands

June 17 – 16.7

Brief walk, came back completely tired. WTF? Hungry but can’t think what to eat. Everything tastes blah and unappealing.

June 18 – 16.8

Slept fairly well last night. This morning felt good for ~2 hours, then tired. Eventually drove to Target and to pick up a framed picture, exhausted after that. Splitting headache at 330 – migraine? trying beer

June 19 – 16.9

Sinus infection flared hard last night, in left sinus as well now, and I just finished the Keflex yesterday. Called my ENT’s assistante this morning, she hopes to hear from Dr J today.

This afternoon, feeling pain in the surgery site and pain in my right arm shot site. WTF?

June 21 – 16.11

Started 2nd course of Keflex Saturday morning. Had a very bad night with hot flashes – didn’t sweat up the sheets, but could not get temp comfortable. Took the plush blanket off the bed, let’s see how it goes with just cotton. Walked with M to the farmer’s market, B picked us up after shopping. So… I exercised. Very tired and depressed and somewhat anxious this afternoon. Right sinus feeling congested, lungs a bit suspect as well tonight.

June 22 – 16.12

Somewhat better night’s sleep. Did 20 mins/2100 steps on the elliptical this morning. Evidently I’m past the period of not having to worry about my weight, and should start thinking more about the calories I take in. Was reading about the side effects of tamoxifen, one common one is weight gain.

June 23 – 16.13

Was tired last night after the exercise (6000 steps, of which 2300 on the elliptical). This morning walked four blocks, completely done in by that. ???

June 25 – 16.15

Yesterday Jonake came to pick me up, we had dosas for lunch which tasted ok to me. Back at her home, I helped with her resumé / LinkedIn, then she dropped me at the Google field to watch Netflix vs Google cricket. Then I joined B and the team for dinner at an Indian restaurant in Mountain View, food tasted mostly good. Long day for me. Muscles even in my arms sore, maybe this is from the Keflex? Keeping left middle fingernail taped down as it’s about half separated from the bed and I don’t want to accidentally tear it off.

Radiation prep visit = all kinds of bad news. Mainly, that there will be skin irritation to the irradiated area (my entire right breast), possibly bad enough to blister, as treatment goes on. And the area most likely to hurt is the underboob. And how the FUCK am I supposed to support that breast to keep it from chafing and hurting and worse? “Wear a soft bra that fastens in front, one size larger than your usual.” THERE IS NO SUCH THING FOR MY BRA SIZE.

June 27 – 16.17

Having intermittent episodes of shortness of breath/mild asthma. Maybe the steroids I was being given with chemo calmed that down, at the time.

June 29 – 16.19

Altogether managed 5000 steps through yesterday. This morning just walking down and up to do the laundry is tiring.

Depression is a real problem right now, ever since the pre-radiation visit last week. I just don’t have the mental stamina to deal with one more thing. Trying to do things to improve my mental health (meditation class in July).

my breast cancer story (thus far)

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