And the orthopod says...

Today I saw Dr. Daniel Flugstad, the orthopedic surgeon who pinned rods into both my femurs in 2002. This is a follow up from the recent bone scan that shows new metastatic cancer active in my right intertrochanteric femur and in the spine at T8 and T9.

After looking at the bone scan images and report, and a new x-ray taken just before my appointment, Dr. F says he would not recommend any surgery. The rods he pinned in 2002 are still providing good support and my legs are at no risk for a fracture. I guess my spine isn't either, because he didn't recommend surgery there.

He told me very sweetly that he thinks of me every so often and was glad to see me doing so well. I told him that thanks to him I dance, I walk the dogs, and I carry on. He smiled and wrote on my chart: "dances, walks, carries on."

Now the hand-off goes back to Dr. G (Seattle's smartest oncologist) to determine any next steps. I see him next week.

Dogfish Head Worldwide Stout at Healthy Spirits!

Worldwide Stout finally available in San Francisco!
We are limiting purchases to one 4 pack per customer. Of course you may also purchase single bottles. We will reserve bottles for BEER OF THE MONTH CLUB MEMBERS ONLY. All others will have to take their chances.

More new release info to come.

cheers,

dave hauslein
beer manager
415-255-0610

computer withdrawls

I haven't died.

My laptop's got a broken screen and I've no money to repair it, so I'll have to wait until I can borrow a computer for a real, juicy, satisfying update.

In the meantime, I've been reading Mutants by Armand Marie Leroi, which covers the history of medically documented "mutants" and human genetic variety. There is a chapter on osteosarcoma that is particularly fascinating. Apparently there is a correlation with height, growth hormone, and propensity for rampant bone cell growth. More on that later...

I've been having pain in my left leg and pelvis again, and it feels exactly how it felt 2 years ago, before I was diagnosed. It gets worse at night. It gets worse mid-month. I can practically mark my calendar. My onc says not to worry, but that's what they told me pre dx, too. I really, really, really think it has something to do with my hormones. Every doctor I've ever spoken to assumes I'm wrong, and yet no one can give me an explanation.

Maintaining a "normal" "successful" quality of life with disease is effing near impossible. I feel exhausted and broken-down every night, the consequence of trying to make it work. har har.

more later my lovelies.

Chiropractor Appointment #3

I had my third appointment with my chiro. First thing I mentioned to him is that I thought I was losing the battle with the edema. He said all we can keep doing it the ‘right stuff’ and see where it goes. I told him D was massaging my calves and that he always heated my calves up with a heating pad before doing the massage. The chiropractor said that he preferred to massage the legs cold because heat brings more blood into the area and that isn’t a good thing when you are trying to force fluid out. Makes sense to me ... no more heating of the legs before massaging and one less thing to be concerned about.

As he was working on my calves ... he said, when you are massaging, you should think of it as pushing the last bit of toothpaste out of the tube. I’ll take that to the bank.

I asked him about support socks/hosiery and he didn’t think they would be helpful in my case ... no support hose for me and one less thing to be concerned about.

I usually lay on my stomach so that he can work on my back and legs. After my first treatment, I had to slide off of the table and then down to my knees on the floor and pull myself up with my arms. Well yesterday, I was much more limber and was able to manoeuvre off of the table and stand up. We both felt good about that one.

time passes

How do you solve a problem like tamoxifen?

I take it and don't think about the side effects very often because I can't bear to. The oncologist said to take it so I take it. I know there's a chance of developing endometrial cancer, so I get checked out by the Smooth Gynecologist Who's Younger Than I Am But Acts Like She's Older. What tamoxifen does seems so direct: It cuts off the absorption of estrogen, which is what my tumor grew on. In August the New York Times told us that tamoxifen can cause the formation of a non-estrogen-sensitive and hard-to-treat tumor. And Tuesday's NYT tells of omission bias, a term for the phenomenon whereby a person worries more about a low risk of harm from something they do than about a higher risk of harm from doing nothing. In the story, the worry was about tamoxifen. The Times reported that women are afraid to take the drug. Out of 632 women in a study, 80 percent said they were worried about side effects, and most of the women said they wouldn't take tamoxifen.
At rowing practice (indoors) Monday night someone was complaining about tamoxifen's side effects, including weight gain. I feel like a fool to take it. But the good it can do is significant. Though now I read now that there's a chance of cataracts and blood clots. My polycythemia vera puts me at risk for clots, and I take hydroxyurea for the p. vera, even though the drug could cause leukemia, because the condition itself could cause leukemia, and my inhaled steroid for asthma could combine with my other drugs to make me even more liable to develop blood clots. But the hydroxyurea lowers my red blood cell count, which makes me less likely to have a clot. Red blood cells are those round red spheres in the image above.

It is a difficult, difficult thing to be alive.

The papers pile up and the news gets worse and there's another surge, the world is dangerous and the wind chill here at the moment is four below. The house is creaking from the cold. I'm wearing a flannel nightgown from Austria and L is asleep between flannel sheets with sketches of snowmen on them.

On the one hand, on the other hand, on the other other hand.

[shrug image from dreamstime.com]

Xeloda – Cycle 3 Week 2

Starting to experience more of the side effects associated with Xeloda. My fingers tips are becoming a bit more sensitive, a bit shiny so they have some swelling and they are once again slightly darkened. In the first two weeks on Xeloda, the toxins seem to build up and then on the third week off, they dissipate.

This same drill applies to the edema in my feet and legs as the amount of fluid has also increased... even with my twice daily massages. It’s a little frustrating but I’m not giving up on the pampering.

I’m still looking for other solutions and I’m going to investigate support socks/hose. D brought couch cushions up from the down stairs and stacked them in a pile on the upstairs couch. So instead of sitting on the couch, I’m lying down and keep my feet elevated up on the cushions. Hopefully that will allow for more drainage.

In comparison to Taxotere, the Xeloda side effects seem piddly.