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. 

 

 

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. 

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. 

Summer Sounds of Seattle

 Here are the summer sounds of Seattle:

The burbling of the water garden in my front yard. (The gold fish still appears to be pregnant, and I'm watching for eggs in the pond.)

The sounds of power tools echoing up and down the street from all the home remodels. 

The crisp snap-snap of my flip flops against the bottoms of my bare feet. 

Today is Day 3 of cyberknife to my sacrum. 

@ Jeanne Sather 2010. 

Cyberknife Meltdown

I had a small meltdown on the table during my cyberknife treatment today, which was weird, because I don't feel stressed when I go in for these treatments. 

I felt physically sick, and wobbly on my feet, and for a minute or two there I wasn't sure if I was going to get home under my own steam or if I would have to call someone to come and get me. 

My suspicion is that this was caused by the huge dose of decadron I took this morning, and I need to take the same dose again before bed. The idea is that the decadron keeps the tumor from swelling and causing more damage when it gets hit with radiation. So it's necessary, but ... 

Anyway, the other thing that happened was that the machine had a computer problem part way through my 35-minute treatment (181 zaps, I got during that time), and the therapists had to shut it down and reboot. That gave me time to think about what I was doing there ... not always a good thing. 

And I could feel the numbness in my legs as I was lying on the table, and also the broken rib on the right side was hurting in that position. 

I abandoned my plan to go to one of the bead stores on the way home, but I did make it to the grocery store, because I wanted tofu for dinner, and a few other things. Nuts for my latest decadron food craving. Lots of drinks to keep hydrated. 

As I write this, the rice is cooking in the rice cooker, the tofu is marinading in a mixture of lemon juice, soy sauce, and grated ginger, and the kittens are playing happily with their new toy, which has lots of feathers. (I haven't written about the foster kittens lately, but they are fine. Making me happy. I may keep one.)

I'm going to head out to the kitchen and chop the vegetables and then fry the tofu and cook the vegetables, and it should all be done just about the time that Older Son gets home from work--isn't that domestic? So unlike me.

@ Jeanne Sather 2010. 

The Garden Report

Finally, we have had a string of hot days in Seattle, and my vegetable plants are responding, with food! Delicious food. Almost-too-pretty-to-eat food. 

So, of course, I photographed the gorgeous collection of vegetables I picked to eat for dinner: golden-yellow and green baby zucchini, cherry tomatoes of three types and two colors, and a red onion. Unfortunately, I'm having technical difficulties uploading the images, so those will come later today (I hope). 

I plan to cook this combination of vegetables in the wok, quasi-Japanese style, and eat it with rice and tofu. I may offer some to Older Son, we'll see how hungry I am. 

Decadron Appetites

Speaking of hunger, the major doses of decadron I've been taking over the past few weeks have given me an appetite! In the short term, this is good, because I had lost 30 pounds in a very short time and was feeling very weak and flabby--lots of muscle tone went along with the fat. 

But I haven't lost any more weight over the past three weeks, in fact I've gained back 2 or 3 pounds. 

Most of my decadron-induced food cravings are for healthy food, thank goodness, but I also found myself making chocolate pudding from scratch the other night. What could be more delicious than a big bowl of warm, homemade chocolate pudding? (I did share with the boys.)

Read more: Gardening

@ Jeanne Sather 2010. 

What I'm Eating, in August

At this time of year, I'm typically eating two servings a day of fruits and vegetables that I've grown in my own garden. 

Yesterday, it was homegrown, organic potatoes and cherry tomatoes. 

Today, it will probably be green beans, possibly with a miso sauce, and one or more of the following: carrots, lettuce, basil, cherry tomatoes, and golden zucchini. I didn't realize when I bought the zucchini plants this year that I was getting ones that would have yellow fruits, but I did, and they have so much more eye appeal than the green ones! I may never go back. 

Maybe I'll dig a few more potatoes. Younger Son hasn't had any yet this year, and we are cooking dinner together tonight. 

The berries are pretty much over, but I'm finding the odd raspberry or boysenberry out there. 

The blueberries fell to Younger Son, which I need to talk to him about. I babied those plants all spring and summer and got only a handful of berries off of them--and this year was the best crop ever--because Younger Son came home from his travels just in time to get most of the ripe ones! And he didn't even ask. 

I found out when I said something about the birds, because I don't usually lose many berries to birds (squirrels, yes; birds, no), and YS said, "Oh, I've been eating those!"

Now, I love the boy, but maybe not quite that much!

@ Jeanne Sather 2010. 

Postcard From Mt. Rainier V

 The classic field of high-altitude wildflowers. 

According to the guidebook, we were admiring pink Indian paintbrush, lavender phlox, white valerian, golden arnica, and more ... but don't ask me which was which. 

@ Jeanne Sather 2010. 

Postcard From Mt. Rainier IV

 What we went to see--wildflowers in the high meadows. 

The drive was about two hours each way from Seattle. I gave Dana the hiking book to pick a trail, and the one she chose was the Naches Peak Loop at the Chinook Pass Summit in the Douglas WIlderness. 

The trail is a five-mile loop, but we didn't do the whole thing. We just walked in maybe a mile or a bit less and then came back out the same way. 

I was delighted to find that I could walk on uneven ground and slopes without losing my balance. The altitude--a bit above 5,000 feet--didn't bother me either.

@ Jeanne Sather 2010.