The Assertive Cancer Patient

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. 

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. 

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. 

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@ 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. 

Back to the Cyberknife

Today is the first of five treatments in my third series of cyberknife procedures. 

OK, let's stop and think about that for a minute ...

In January, I had a series of five treatments to my skull. There was a tumor there that was pressing on a nerve that controlled my tongue. It was the first tumor I've had north of my collar bone, ever, and so it got my--and my doctors'--special attention. 

Important to note, however, that this was NOT a brain tumor. Just another "bony lesion," as they say in my reports. 

Then, in early August, I had a series of three cyberknife treatments to zap a tumor in my spine that was moving in on the spinal cord. See: Very Quick Update

That series was, I am happy to report, uneventful. No problems, no side effects, except for excessive talking due to the decadron. I really noticed it that time, and found myself apologizing for talking 2,000 words to the minute (about double my normal speed). 

And now, today, we start the more complicated of the procedures, to treat a 7-centimeter (about 3 inch) tumor that has taken over my sacrum (the bones below the spine and above the tail bone). There are nerves there that run down the legs, and these were pinched by the tumor. I was experiencing numbness and tingling, especially down the left leg. No loss of motor control yet, thank goodness. Or perhaps just a little bit. 

Oh, and then there's the tumor in my ribs that decided to act up this past week. Incredible pain--I won't even go into that here, since Dr. Lee the First got the pain under control for me when I saw him on Friday. 

This tumor has been radiated before, several years ago, but it has apparently come back (Note to self: Ask Dr. Eulau how this can happen. It's happened to me several times, and I thought radiation killed tumors DEAD). 

Anyway, Cyberknife Guy thinks he can get it with just one zap. So that will be, I guess, a total of four cyberknife treatments this year. 

You might be wondering why I'm getting cyberknife and not conventional radiation. I've had some of that too, recently. Twice, in fact, both times to the right femur and hip. But the problem is most of my body has been treated with conventional radiation, and you can't do it twice in the same spot. 

Hence, cyberknife. Plus, the cyberknife is targeted, which means less damage to surrounding tissues, and I don't need any more tissue damage, thank you very much. 

T-DM1 Update

For those of you who were wondering what is happening with the clinical trial of T-DM1, that's still part of my plans. But I have to finish the cyberknife treatments before I can get the first dose in the clinical trial. In fact, I have to wait 28 days after cyberknife finishes to get the first dose. 

The trial is going to open at the University of Washington/SCCA, although it has been delayed a bit. The word now is "September," but I think that may drag out longer. However, I know the principal investigator, Julie Gralow, and if anyone can get a trial up and running in a timely fashion, it is Dr. Gralow. 

If necessary, I can go to California and start the trial down there, but I would so much rather not do that--the time and cost alone are prohibitive for me. But we'll see. The most important thing is to get that new drug on-board before any more of my mets start getting frisky ... 

Read more:

Cyberknife

T-DM1

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@ Jeanne Sather 2010. 

Staying Cool, East and West

One of my six key words, re: my cancer treatment, is "dehydration." Another is "hydration," which, obviously, is how I attempt to avoid dehydration. 

One of the drugs I was on recently, Tykerb, kept me pretty much chronically dehydrated for two years, because it causes diarrhea, The Big D. When my fluids were a quart low, I might end up in the hospital, at the cancer center with a bag of IV fluids running into my arm, or passed out on my bathroom floor. 

This blacking-out thing happened at least three times in the past year, and I hit my head every time. No obvious brain damage so far. 

As a result of all this, I have become something of an expert on staying hydrated. When we headed up to the mountain on Saturday my friend and I had a water bottle each, plus we had a cooler with a quart bottle of Japanese cold tea, some peaches, and a bottle of astringent, all on ice.

(A side note: You don't drink the astringent, obviously. Wiping your face down with a towel splashed with cold astringent is an old hiking trick for feeling refreshed after you come off the trail. I wiped my face, neck, arms, and any place else I could reach--cleans off the sunscreen, dirt, and sweat and evaporates nicely in mountain breezes. So what if I only walked two miles?)

We also stopped for cold drinks twice. The first time we mixed our own milkshakes at a truck-stop kind of place that had a customer-operated milkshake machine. Not the most nutritious thing I ate all weekend, but it sure was fun to make and pretty tasty.

Cooling Off, Japanese-style 

We drink a lot of mugi-cha around our house in the summer. Mugi-cha is a cold barley tea that you can buy at most Asian grocery stores. It comes in a box of a dozen or so large tea bags. Each bag makes one quart, and all you do is put the bag in a pitcher, add cold, filtered water, and refrigerate, bag and all. (Pull out the bag and compost it when the tea reaches your preferred shade of cha.)

Mugi-cha has a delicious, smoky taste, but no calories, no caffeine, and no additives. Don't sweeten it, it doesn't need it.

Another way to keep cool--eat o-somen, cold Japanese noodles. 

One of my fondest memories of hot days in Tokyo (temperatures in the mid-90s, humidity in the same range: 90 percent or more) was to come home at the end of a sizzling, sweaty day, shower and change into a cotton yukata, and make a big bowl of cold somen. 

Now, eating somen is a communal activity. A lovely way to connect with your family at the end of the day. You cook the noodles--three minutes in boiling water--cool them with cold water and ice, and then float them in a big clear-pressed-glass bowl with more water and ice. The bowl is important, trust me. 

That bowl goes in the center of the table, and everyone gathers round with small bowls of cold dipping sauce with chopped green onions floating in it. 

You dip noodles from the common bowl into your individual bowl, and slurp them up. Everyone eats until there is nothing left in the big bowl but a few stray bits of noodle and the odd sliver of ice. The condensation on the outside of the bowl makes you think the temperature has dropped a few degrees ... 

I made this for Dana Saturday night, after our hot mountain adventure, and we ate it in just this manner sitting on my front porch and telling lies (I mean, telling stories) about the old days in Tokyo. The onions were fresh from my garden. 

Calorie count: Zero for the tea, about 300 to 350 for the cold noodles. 

Cooling Off, Seattle-style

Today I had to go to Swedish Cherry Hill for the planning CT for my next round of cyberknife treatments, and it was hot. Younger Son went with me, but then sloped off to take care of a couple of errands on campus. We met up again at the Starbucks inside the hospital at Cherry Hill, and of course I ordered a cold drink while I waited for him. 

One Starbucks mocha frappuccino, with whipped cream. Delicious, of course, but a whole meal's worth of calories. What do you think? Six hundred calories? More? 

I meant to ask at the counter, but I thought it might spoil my appetite. 

I just checked on the Starbucks' Web site, and, according to the site, the drink I had today was almost 400 calories. Personally, I think that count is a bit low. Still, that's more calories than a whole dinner of cold noodles. 

See: Frappuccino calorie count

@ Jeanne Sather 2010. 

A Day on 'Surgery Time'

Friday was the day for my surgical procedure to place four gold seeds (fiducials, or fiducial markers, they are also called, but that sounds too much like the federal reserve and Alan Greenspan to me) in my sacrum. 

I was scheduled to check in at Evergreen Hospital on the Eastside at 10 a.m., and my friend Gretchen picked up Younger Son and me at 9.

I rather optimistically thought that I would be on the operating table by 10:05 or so, spend an hour on the table, another hour recovering from the sedation, and be heading toward Cherry Hill for my second medical appointment of the day by noon. 

What was I thinking?

It didn't go quite like that. 

We didn't get back to the house until 5 p.m., having rescheduled the cyberknife treatment for Monday. 

So, checked in at 10, and talked to a very efficient, friendly woman named Linda who got me through that whole paperwork thing very quickly and efficiently. (My regular readers will know how much I HATE paperwork, especially medical paperwork.)

Younger Son was there to give his name and cell phone number as my emergency contact, and Gretchen did the same thing as my official driver. (We ID-ed Younger Son as my bodyguard, which brought a few smiles.)

I was in a little surgery prep room by 10:30 where I changed into a gown and went through my medical history with a couple of different nurses--this took hours, of course. The doctor, Dr. Ferguson, popped in at some point and met Younger Son and Gretchen and explained the procedure very clearly. Love it when doctors can do that--and take the time to do it!

I think they wheeled me into the OR at about 12:30, and after getting me comfy on the table on my tummy, the IV sedation began and I don't remember anything after that until I was back in my little surgery prep room by about 2.

The nurse told me that I would probably "recover" there till 4, and I laughed, thinking I'd be awake and ready to go in 20 minutes. But she was right, and I dozed off and on and sipped at a mocha that Younger Son brought me until a quarter to 4. 

Then Gretchen helped me get dressed, two volunteers appeared with a wheelchair, and we came home. Oh, free parking at Evergreen Hospital for patients! Another nice surprise. 

So, I'm home, sitting here in my cotton yukata with the front door open so that I can hear the sound of the water garden and enjoy the fresh air. I'm in no pain, and Younger Son is planning to walk to the store and then make me some dinner, since I haven't had anything all day except for the mocha.

Older Son took the day off and represented the family at my uncle's funeral in Olympia, which is about an hour south of Seattle. I called him briefly to let him know that I am home and that things are fine, and I'll get his report on the funeral this evening. 

Once I eat, I expect to go to bed and read, and bring Constant the Wonder Dog in with me for comfort. He spent the day alone at home, which he isn't used to. The three foster kittens also need some playtime and attention, but Younger Son said he would do that. 

No phone calls, please. E-mails are welcome, but I won't read them until tomorrow morning. 

The bottom line? I'm fine. 

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@ Jeanne Sather 2010. 

  

Walking With a Cane

My legs have been getting progressively worse over the past couple of weeks--first, numbness and tingling, then weakness in my upper legs and knees especially. 

The decadron helped some, but I'm wobbly on my legs, so I decided to take my cane when I drove myself to radiation therapy today. 

And I was reminded, yet again, how differently the Temporarily Able Bodied (that's all the rest of you who don't have a life-threatening or chronic illness, broken leg, or a physical handicap) treat those of us who do. 

Item One: No eye contact from TAB people on the street. 

I am welcomed warmly inside the cancer center, by both patients and staff, and they all make eye contact, but NOT the TAB. They do when I'm not carrying a cane. 

Item Two: How close is too close? 

I'm talking about automobile/pedestrian interactions here. When I can't move quickly, like today, I always cross at a marked crosswalk, preferably one with a light. 

And then, as I hobble across the street, I watch the drivers seething behind the wheel because I'm moving too slowly.

I stopped at University Village on my way home from treatment today, because I wanted a couple of books, and I also wanted to stroll through Ravenna Gardens and get my plant fix and also pick up a few plants I've been wanting. 

Because there are so many pedestrians in U Village, and because the drivers don't stop for them, pretty much all the cross walks are signed, painted with zebra designs, and also set off by speed bumps. 

So pretty safe, you might think. But I crossed at one of these cross walks this afternoon, and as soon as I reached the dead center of the crossing, the car that was waiting for me pulled through behind me. 

The car was large, probably an SUV, and it was less than three feet away from me. Now, I'm sorry, but when you have a cane and know that you can't leap out of the way if necessary, three feet is TOO CLOSE. 

I don't want any moving vehicles within six feet of me. 

One thing you have to remember about U Village is that most of the people who shop there are people with a sense of entitlement who live in neighborhoods like Laurelhurst. (That's the neighborhood where Bill Gates grew up, son of a wealthy lawyer, although he doesn't live there anymore.)

Item Three: Salespeople are not helpful. 

You would think, if you see a customer stroll into your store with a cane in one hand and a box for collecting plants in the other, that you would at least offer to help. Carrying the box and helping me find what I wanted would have been better. 

I was hot. I was tired. I had a cane in one hand, which I managed to drop twice while trying to juggle some plants into the cardboard carrier, and no one offered to help. 

I was also having trouble trying to find the plants I wanted--some mint, preferable chocolate mint; more lobelia; and a few other plants I was eyeing. I also planned to buy some seeds. 

But I got so frustrated that I just set the cardboard box down and left. I won't be shopping again there anytime soon. 

Now, I'm home on the couch, sipping a homemade strawberry milkshake and debating which of my new books to read first. I plan to get myself firmly tucked in on the couch with pillows, a light blanket, the books, and plenty of drinks--maybe another milkshake. 

I'm also going to take out my contacts and take all my meds--for pain, anxiety, swelling (steroids), and whatever else is taking up space on my bedside table. I hope that Older Son will be in a good mood when he gets home so I can ask him to take care of a couple of chores that I didn't manage to do today.

Connie got a walk, though. The next-door neighbor, a dog person, took him out for me. 

Assertiveness Pays Off

After writing the last post about anxiety, and also e-mailing my doctors, I figured I might as well try to call Heather again, because she is the gatekeeper on getting me in for the "gold seeds" consultation. 

I happened to catch her on the phone--and she was very nice and professional--and she said, "Oh, you're on my list of people to call today," which, at this point, wasn't good enough for me. 

However, we both stayed friendly, and I now have an appointment with a Dr. Ferguson for next Tuesday, which was the soonest they could get me in. I do think that is OK. Then it will take a day or two to schedule the appointment to actually place the seeds--this is a day surgery, I'm going to be loopy and will need a driver, so the sooner I have that date and time the better.

Then the cyberknife team has to wait a week for the seeds to heal, so that they don't move. After that I go in for the planning CT for the cyberknife, then Dr. Lee the Second (Cyberknife Guy) and his team spend a few days or a week doing the math, and then I'm on the table.

Thank goodness! 

Cyberknife will take five days of daily treatment, and possibly have some side effects like irritation to the bladder and also the bowel. I can deal with that. Also, last time I had cyberknife, I felt sickish for a few days afterward, which I believe was caused by dead cancer cells in my blood. It was a weird sensation, but now that I know it can happen, I will just take it easy for awhile after the treatment is over. 

Next step: E-mail my doctors and let them know that I have dealt with the problem but I'm also going to ask them to gently lean on Dr. Ferguson, the doctor I am seeing next week, to let him know that this is (I am) a patient who is in danger of losing control of her legs. My dog will be very unhappy if I have to walk him from a wheelchair. Not to mention me.

Jeanne Sather 2010.