The Assertive Cancer Patient

I Need Some Time Off

Yesterday I had the final-final cyberknife treatment, to kill the tumor in my sixth rib on the right side. 

 

Over the past several months I have had huge doses of radiation--four separate series of treatments--and I'm beginning to understand the term "radiation sickness," usually applied to the hibakusha who survived the bombings of Hiroshima and Nagasaki. 

Not to get too dramatic about the whole thing, but my body has taken a major beating, and now I need to heal. Part of that will be simply doing less, every day, until my energy rebounds. As a result, I won't be online much for the next week or so, and I will be skimming through my e-mail, but not answering most of it. Sorry. 

I spent several hours working in my garden this morning, with the faithful Connie playing alongside me, and that was good. I'm still a bit wobbly on my feet, but getting better every day. And emotionally I am very strong, so please don't worry about that. 

Now, it's time for me to settle down and watch a movie. I rejoined Netflix, and I have to say it's much improved over the last time I had a membership. I love being able to watch online on my MacBook, which was a service they didn't have two years ago. And I'm done with Hulu for good--all those crappy commercials! 

A package just arrived from Cynthia, a dealer in vintage beads and jewelry making supplies, and everything she sent me is so  beautiful that I'm tempted to start work on some pieces right away. But I'll wait. I make mistakes when I'm tired. But that's my plan for the holiday weekend--stay close to home and play in the garden and with my jewelry projects. 

The next step: getting enrolled in a T-DM1 clinical trial, either in Seattle or in LA. I see Dr. Lee the First tomorrow, so we'll be talking about that. Wish I could put it off for a week or two, but I can't. Sigh.

PS: The frog is me. 

 

@ Jeanne Sather 2010. 

 

 

Hangin' in There

 After yesterday's post about Asia's smallest frog--and also in response to how I've been feeling lately--my friend Jen e-mailed me this photo. 

More on T-DM1

Well, as a woman with advanced breast cancer who HAS RUN OUT OF TREATMENT OPTIONS, I have to disagree with Breast Cancer Action on this one. 

See the letter re: T-DM1: T-DM1 Breast Cancer Action Letter

I understand the arguments the group advances, I even agree with them up to a point. But the whole approval process is incredibly long and cumbersome, and getting drugs outside that process--despite what you might think when you hear the term "compassionate use"--is almost impossible, in my experience. 

As I said in an earlier post, I don't think this will hurt my ability to get the drug in a Phase II trial. There is a trial opening here in Seattle soon, unless this news somehow makes the folks at the UW less enthusiastic about getting the trial through their own approval process. But I don't see why that should be. 

I know the risks associated with this drug. (I haven't posted them yet, but I will.) There is a very long list of quite nasty potential side effects. I also know that some women have lived for a year or more on this drug and others have seen their cancer go into clinical remission. I'll take my chances.

See also: T-DM1

@ Jeanne Sather 2010. 

I Would Have Liked to Study Frogs ...

What do they call the scientists who study frogs?

I would have liked to have done that. Take a look at this little guy, Asia's smallest frog. What's not to fall in love with? And devote your life to?

According to the scientists who discovered it--in 2004, why did they wait so long to publish?--the frog lives inside a pitcher plant, even the tadpoles are hatched and mature inside the plant. 

See: Smallest Frog

@ Jeanne Sather 2010. 

Goings On at My House ...

Just a quick round-up, for those of you who are wondering "but how ARE you?"

I feel moderately crappy, probably because of the cyberknife, and am heading to bed for a rest. Unfortunately, I'm out of new books. 

Good news though--very little pain right now. 

I have the full-blown decadron moonface. My cheeks remind me of myself as a toddler. I had this same face during the London trip: Chubby Cheeks in London

The kittens are sneezing, but seem fine otherwise. I went by the rescue the other day and got some medicine for them, and while they are still sneezing, they haven't gotten any worse. 

I let them out to have the run of the full downstairs as I was cleaning the bathroom, where they are normally housed, and they were just a hoot--racing from one end of the house to the other--up, down, over, and around the furniture. 

Now that they've had their fun, they're back in the bathroom, napping. 

I was planning to work on jewelry today, but after only four hours of sleep, I'm going to abandon that plan. Tomorrow, maybe. 

Ditto to going out to run errands. Older Son hasn't come downstairs yet, but when he does I'm going to ask him to get a few things for me at the grocery. Hopefully, he will be in a helpful mood. He isn't always. 

My upset tummy includes a sour mouth and the need to eat frequently to keep nausea at bay. The foods that seem to work are pancakes, scrambled eggs, pasta, tofu, milk in all its forms, including vanilla milkshakes, which is what I had for breakfast. Biscuits or scones are good too, but they are more work than pancakes. 

Life with cancer. Isn't it fun?

@ Jeanne Sather 2010. 

From the E-Mail Box

Yet again, I would like to apologize for not answering my e-mail in a timely fashion. 

These days, the e-mails least likely to be answered are ones from people I don't know who are asking me to do something for them. A year or so ago, I used to jump all over these requests, and help people sort out insurance or billing messes and all sorts of problems. And I enjoyed it. 

Now, I find that I don't have the energy, the time, or, quite honestly, the interest--especially if someone wants me to take over their problems and solve them for them.

If you are writing to me for help, say with a problem with a Citibank mortgage or HELOC, before 

you e-mail me with questions, please read through that category on my blog. Because everything I've done re: Citibank is documented there, and those posts may be helpful to you. See: Citibank  

Then there are the interesting e-mails, and I try to do a round-up of these every so often. There, I have seriously fallen behind. 

Valerie

Back in April of 2009, I received a heart-breaking e-mail from a 28-year-old single mother of four whose 11-year-old son had just been diagnosed with sarcoma. The subject line on her e-mail was "My 11 year old son has cancer what do I do from now on?" which was enough to bring me to tears. 

We wrote back and forth a dozen times or so over the past year, and then last night I received an e-mail from Valerie telling me that her son was in remission and giving me the link to a newspaper article about the family. 

Ra'kem, the son, is beautiful, and I have to say he looks a LOT like his mother. 

The Make-a-Wish Foundation gave him a new TV and a Wii. See: Make-a-Wish Foundation Gives Wii   

Letting Go

My faithful friend Teri, The Cheeky Librarian, sent me a link to this story in the New Yorker: Letting Go: What Should Medicine Do When It Can't Save Your Life?

This is a topic that's been top of mind for me during the past few months, and you can find my posts at these two links: 

End-of-Life Planning

Hospice

Of course, then there is the, for me, bigger question, of how to live my life while waiting for this disease to catch up with me. Much tougher. Is a day in bed reading Dorothy Sayers a "wasted" day? 

I can't say I struggle with this question every day, but I certainly think about it as I prioritize my life, day to day. 

Tomatoes

My friend Brooke, who is also sitting and waiting for her tomatoes to ripen, sent me this: Sungold Tomato Nuggets

I don't know if I will harvest enough cherry tomatoes to make a batch, but these certainly look delicious. 

More Food

A former student of mine, Krista Winjum, has a new food blog. Champagne and Cornflakes it's called, but she seems to be writing about meat recently. How about a good cornflake recipe, Krista? 

Or something for us vegetarians?

Nap Time

I'm going to stop here, because it's time for my first nap of the day, but if you have e-mailed me about something and I haven't gotten back to you, please just send me another message. Then YOUR message will be at the top of the queue ... at least for awhile. 

@ Jeanne Sather 2010. 

T-DM1 News (???)

I'm not sure what this news item about T-DM1 means for me, if anything. T-DM1 is the new drug that I plan to get in a clinical trial once I've finished my current cyberknife treatments. 

I think it's the right drug for me--pretty much the only drug, really--and there is a trial opening at the UW/SCCA soon (although THAT is held up in a committee, I'm told). 

In any case, the drug maker failed to win "accelerated approval" for T-DM1, "because all available treatment choices for metastatic breast cancer ... had not been exhausted."

Well, here is one woman for whom all options HAVE been exhausted. But I'm not going to panic, because I don't think this news affects the clinical trial, but it might affect how soon the drug is available outside of a trial. And of course if it works for me, I'm going to want to be able to get it. 

I have an appointment with my medical oncologist, Dr. Lee the First, in a week or so, and I'll dump this one on him. 

Read: No FDA Fast Track for T-DM1

Read more: T-DM1

Feeling cynical about drug companies? You're not alone. Genentech will lose an estimated $1 billion a year in sales of Avastin, now that its effectiveness in treating breast cancer is in doubt. Gotta make that income up somewhere. 

@ Jeanne Sather 2010. 

Resurfacing

Well, the best-laid plans and all of that. 

On Thursday, I went in for what I thought would be my fourth cyberknife treatment to the sacrum, only to be told that the staff had been trying to reach me by phone to tell me not to come in, because the machine was down.

Now, this kind of thing doesn't upset me--it can't upset you if you are going to survive cancer treatment. Flexibility is key here--so I just turned around and came home, with a stop by the bookstore for some "comfort reading," because I was feeling rather punk. 

Things got worse the following day, Friday, and I ended up taking a rest day, all tucked up in my comfy bed with the flannel sheets and LOTS of pillows. Cyberknife Guy had warned me that the treatments could cause problems with my bladder or bowel or both, and that's what happened. Incredible diarrhea, lasting all day long. 

My bladder, however, seems unaffected. 

So I had my dog, and the kittens, which I let into my room to play while Connie was outside, and several good books. Also some foods I could eat--homemade blueberry scones left over from the day before, an omelette I made with vegetables from my garden, and lots of liquids. I was pretty dehydrated, but I think I caught up by evening. 

Comfort Reading

When I feel sick, I like to reread books that I've read and loved in the past. This time is was two Dorothy Sayer novels, "Gaudy Night" and "Busman's Honeymoon," both of which I consider among her best. Wimsey and Harriet Vane get married in "Busman's Honeymoon," and Sayer manages to let the reader know that they have a fantastic sex life without ever giving a graphic detail--I love that. 

Having come of age in the days when "bodice rippers" were dominating the best-seller lists, I appreciate a little restraint. 

In addition to Sayer, I bought another book in the Alexander McCall Smith "No. 1 Ladies' Detective Agency" series. This one is "The Miracle at Speedy Motors." I'll be reading this today, once I finish up with my gardening projects in the back yard. 

I haven't figured out yet why I like Smith's books so much, except that he has a gentleness to his story telling that I appreciate. And he is a fantastic story-teller. I also like his Edinburgh series--those make me want to go to that city and just stay for a month, walking the streets, listening to the voices, and admiring the stones in the ancient buildings. 

Maybe I could arrange a house-swap with someone who lives there?

Pain

One piece of good news: My pain is fading. The rib still hurts, because it hasn't been treated yet, but the pain in my sacrum is definitely going away.  

The thing about pain is that it is exhausting. I get tired so fast on a day that I'm in pain. And then as a result of that, I feel clumsy and stupid ... I trip over my own feet, or my cane if I'm using it, and I drop things, which I hate more than anything. And I can't get words to come out of my mouth in the right order. 

But that is all better today, and I'm going to take it fairly easy today and tomorrow. I do have an appointment with Cyberknife Guy on Monday, and I have a few questions for him. 

 Re: Kitten photos. Some readers have asked for more photos of the kittens, but I'm having camera problems. In the meantime, here's one close-up of Mugi-cha, the kitten I plan to keep. She's named for the Japanese cold tea, which she was drinking out of a glass in my room yesterday. Click on the image for a larger view.  

No one NEEDS a new bracelet, but maybe you'd like one. Take a look: Bracelets!

@ Jeanne Sather 2010. 

Nickelsville Moves Back to the Neighborhood

Nickelsville--the much-traveled Seattle homeless community--has failed, yet again, in its efforts to find a permanent site, and has moved, yet again, back to my part of town. 

The tent city's hosts are--yet again--the University Congregational Church, which has given up its parking lot as a site for the camp. 

I haven't been by yet to see how things are going. I got this news from an e-mail announcing that the move would take place on August 14. My personal priority is to call the pastor at University Congregational and thank him or her and the church community for hosting the homeless. 

Why do I feel the need to thank them? Because I suspect the church is getting a lot of negative phone calls right now, from people who just don't want all those homeless folks right there in OUR neighborhood.

But where do you think these homeless people came from? Our neighborhood. Our city. Our state ... Yes, some wandered west from less hospitable cities--that's always the claim, anyway--but my point is: They are us. Our brothers and sisters. Our cousins. Our alcoholic, drug-using former brothers-in-law ... 

See also:

Those Are Komen's Pink Tents

Homeless in Hawaii

Nickelsville Update: It's Cold Out There

@ Jeanne Sather 2010. 

Cyberknife Update

Today is Day 4 of the current series of cyberknife treatments.

I'm feeling a bit unsteady on my feet, which is caused by the tumor in the sacrum that we are nuking--it's pressing on some nerves that run down my legs. It's also probably a side effect of my most recent round of cyberknife, to the spine. That makes me feel queasy and wobbly.

I'm using my cane and trying to stay out of trouble. I keep tripping and also dropping things, like keys and my cell phone, and whatever else I happen to have in my hand. I need to do things like getting in and out of the car in a careful, methodical way, which is so not me. 

Getting into the car:

Prop cane against the car. 

Open door with key.

Throw my bag across to the passenger seat. 

Throw the cane into the front seat. 

Carefully lower myself into the seat, hanging on to the door frame of the car. Lift left leg into the car manually. 

Make sure everything I need is within reach.

Fasten seatbelt and go. 

Typically, I drop the cane once and the keys twice while performing these maneuvers. 

The only problem I've had with cyberknife so far is that the folks at the pharmacy can't count. I ran out of decadron, and when I went to get some more, they told me it was too soon to refill the prescription and that insurance wouldn't pay for it. 

Well, I knew better than to tackle that problem myself, so I turned it over to Cyberknife Guy's nurse, Estelle, and she got it sorted out. As a result, I'm behind on taking my dose for this morning and I need to get over to the drug store and pick it up. 

Support this blog:

@ Jeanne Sather 2010. 

Younger Son Checks In

 Younger Son has been without Internet access since his arrival in Fukuoka, Japan, almost a week ago, but he is finally online and sent me a long e-mail. He also set up a Japan blog, which is going to be fun. 

No photos yet, but I've asked him to e-mail me one to post.

The Japanese language is important in our family (I have a master's degree in Japanese from the University of Hawaii at Manoa and I lived in Japan for a total of seven years. I was also married to a Japanese man, Kazuhiro Babe, for about eight years, and we adopted Older Son together, 25 years ago now).

So Younger Son has been exposed to Japan and Japanese pretty much all his life, and he's been studying Japanese since he was 5. He's also made two short trips to Japan, one when he was 6, when the three of us went for two weeks, and then the "Military History Tour of Japan," a trip he and I made when he was 14. That was about a week.

Here's what he had to say about speaking Japanese:

I'm surprised with myself at how much Japanese I actually know. We held a reception after today's convocation and opening ceremony, and there were a lot of Japanese students there. I talked mostly in Japanese for an hour and a half, and while my brain hurt by the end of it, it was a great experience. 

And here is my reply:

  Despite all my teasing about your "poor" Japanese, I knew it would be pretty good once you got 

there. But isn't it amazing how you can FEEL your brain getting tired after an hour or so? That happened to me too, and I would have to switch off and just nod and smile and hope I didn't agree to anything too awful while I wasn't really listening. 

Here's the link to his new blog: Robin in Japan

 The photos: Here is a link to the post that explains the hanko in the photos. It is my Japanese "name stamp" that I passed on to Younger Son to use while he is in Japan. 

Younger Son Redeems Himself

@ Jeanne Sather 2010.