The Assertive Cancer Patient

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. 

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

Support this blog:

@ Jeanne Sather 2010. 

Very Quick Update

I'm still awake at 5 a.m., mostly because of all the decadron I had to take today to get through my first cyberknife treatment, but also because I had a bomb dropped on me in my personal life.  

I'm not going to go into that any further, other than to say it could not have happened at a worse time. 

I have three cyberknife treatments this week to treat the tumor in T-9 in my spine that is touching my spinal cord. If it compresses the cord, I will be paralyzed. We are talking paraplegic here, with the possible loss of control of my bowl and bladder, plus my legs, of course. 

The first treatment today was a piece of cake. I had the same techs who treated me in January for the tumor in my head, and of course I trust my doctor, who planned the whole thing, so I was able to relax on the table--lights low, soft jazz on the tape system--and just zone out for the 30 minutes or so that it took.

The only physical problem I had today was caused by the decadron--necessary to keep the tumor from swelling and causing more damage after it gets zapped. But decadron also makes you crazy--I was speaking at 200-percent speed all day long and bouncing off the walls. I had to take the second dose right at bedtime, and that's why I'm still awake. 

I'll repeat the drill tomorrow, although with about half the amount of decadron on board, and that should help. 

Friday is treatment three, the final one, but that is complicated by the fact that I am having the procedure to place the gold seeds in my sacrum in order to make sure the cyberknife lines up properly for that treatment. These seeds are going to go into the bone, placed by a needle like the kind used to do bone marrow biopsies, and I will have conscious sedation, so I'll feel it if the doctor gets too close to a nerve--a good thing, because if he hits one, the numbness and tingling in my legs may not go away. 

After that procedure, at 10 a.m. at Evergreen Hospital, Younger Son and my friend Gretchen, who is driving, will take us all back across the lake to Swedish Cherry Hill, where I will have the final cyberknife to my T-spine.

It's going to be a heck of a day, and I will probably go home and go to bed after that. I know there are risks involved with both these cyberknife treatments, but I feel they are acceptable risks. Kinda like last January, where the choice was to cut open my head or treat me with a computer-controlled robot.

The cyberknife to the sacrum is supposed to start one week after the placement of the seeds, so a week from Friday, assuming they can get me on the schedule. 

More later on all of this, but I have to try to get some sleep. I'm supposed to be going out to breakfast with both of my sons at 10 (Older Son is buying--he invited us), and I haven't been to sleep at all yet. 

Read more about Cyberknife

@ 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. 

Anxiety City

This morning, I was suddenly hit with a wave of anxiety like I haven't experienced in a long, long time. 

Last Friday, I saw Cyberknife Guy and we agreed to treat the tumors in my spine and sacrum with cyberknife. He went through the whole procedure and the possible side effects and told me what the next steps would be. 

The very next step is to have some gold seeds planted in my back around the tumor in the sacrum, to help make sure the cyberknife is on target. This procedure is handled by another department at Swedish Medical Center, so Cyberknife Guy and his staff don't have control over the scheduling of my appointment. 

But his nurse told me if I hadn't gotten a phone call by Tuesday, to let her know. So I waited till the end of the day Tuesday, then called and left a message for Cyberknife Guy's staff, and one of them called me back the next morning. 

Her message said I should be hearing from a woman called "Heather" and that I would need two appointments--a consult, and then the procedure itself. She also gave me Heather's phone number, which I called immediately, but she was--of course--at lunch. 

I left a message, and I've been waiting ever since. Now, not getting a call back within 24 hours may not sound like a big deal to some of you, but when you are worried about losing control of your legs, IT IS A BIG DEAL. 

Also, based on the timeline Cyberknife Guy had laid out for me, I expected to get the seeds planted in my sacrum this week, and it doesn't seem likely that that is going to happen. 

Which pushes everything else out further, including enrolling in the T-DM1 clinical trial, which I need to treat the other dozen or so tumors in my body (When I have a scan, the doctor who reads it never bothers to count all the tumors, he or she just writes something like "numerous bony lesions" and lets it go at that. Except for pointing out the ones that are most dangerous, and the ones in my lung and lymph nodes--those get special attention).  

So, after working in the garden for awhile and chatting with a couple of neighbors (we are all gardeners on this block, pretty much), I came inside, checked the voice mail, and then realized how anxious I was. Gulped down two xanax, and then sat down to e-mail my doctors. 

The first e-mail went to Cyberknife Guy, and then I forwarded it to Dr. Eulau, as an FYI. We'll see if one or the other of them can get things moving. 

Meanwhile, I have the rest of the day to get through, including a radiation therapy appointment at 3 p.m., and a couple of small errands. I have some jewelry projects to work on, but I can't sit still for that, so I think I will go out and water the back garden, and then maybe shower and dress and head out early. 

My next door neighbor said they spotted a rat on the fence between our two backyards (lots of food out there right now), so I need to get some rat poison to take care of that little problem. There are only three creatures I will kill: rats that have invaded my living space, mosquitos, and flies if they are indoors. I can't stand having a fly in the kitchen, but that's because I'm a germ freak since my cancer diagnosis. 

Oh, and we treat the dog and cat for fleas on an irregular basis, so I guess I'm willing to kill fleas.

A PS on mobility: It was only with great difficulty that I was able to persuade myself to use a cane a few months back when I was in a lot of pain. But a wheelchair? I am so not going there. (Of course, that's what I said about the cane ... but if we treat these spots quickly enough, I should not lose control of my legs.)  

See:

The Lady With the Cane 

Here's the entire "cane" category:

Cane 

@ Jeanne Sather 2010. 

Quick Update

The daily radiation therapy to my right femur continues, and I'm getting tired. 

I don't know if my fatigue is from the radiation itself, or from having to make the daily trip to the cancer center. I have several friends who drive me to appointments, and sometimes I drive myself. 

However, the last of my 20 treatments is August 3, so that's coming up pretty quickly.

In the meantime, I'm waiting to hear back from the person who has to schedule me for the next steps in my cyberknife treatment to my two largest tumors. I need a consult appt. and then an appt. to have the actual procedure done. (This is the placing of little gold seeds to guide the cyberknife.)

I wish we could just skip the consult and proceed directly to doing the procedure, especially since Cyberknife Guy (Dr. Brian Lee) has already explained it to me. Maybe I can suggest that when the scheduler calls me back ... 

In the meantime, I've seen Dr. Eulau, who is just back from a week in Paris, lucky guy, and is in fine form. He and I are on the same page, and he is really glad that Cyberknife Guy agreed to treat both these tumors with cyberknife. It should be much easier on me than conventional radiation.

What else is happening? I'm on decadron now, which is helping with the weird sensations and weakness in my legs caused by the tumor in my sacrum (I now know more about my sacrum that I ever cared to--that's all I'm going to say about that!).

Also, a friend and former student who recently returned from a couple of years in China with her family offered to loan me her 10-year-old daughter to help out twice a week, watering my garden and walking the dog. She's used to dogs, but we still have to get Connie under control, so we'll be training him in the yard a couple of times and then walking him together once or twice before I send her off on her own. Sweet kid--I love girls at that age!

I need to apologize yet again for falling behind on e-mail. I'm having trouble keeping up with e-mail from my closest friends, let alone strangers, PR people, and people with questions ... I will try to get to that on Friday morning. 

PS: Today's breakfast: Half a dozen baby carrots, a handful of peas in the pod, two cherry tomatoes, and a couple of blueberries. All eaten fresh from the garden, of course. 

@ Jeanne Sather 2010. 

Cyberknife Guy Is My New Hero

Cyberknife Guy has come through for me, and I think he's my new hero--at least this week!

He has agreed that the two most dangerous of the tumors that are threatening me, one in my spine at T-9 and the other a huge puppy in my sacrum that is causing loss of sensation and weakness in my legs, can both be treated with cyberknife. 

He also agreed that he could treat both of them at the same time, as long as I was willing to lie on the table for that long. No problem, I replied. Let's get this done! 

Next step? Get me in to have some "gold seeds' placed around the tumor in the sacrum to help make sure the radiation is hitting the target perfectly.

We'll wait a week after that procedure for the tissue around the seeds to heal, and then I'll go in for another CT, this one on a machine that lines up perfectly with the cyberknife treatment robot. 

After that, Dr. Lee (Cyberknife Guy) and his team will spend a few days working on the mathematical calculations for my treatment, and then I'll start. Five treatments, one a day until I'm done. 

We are hoping to have this completed by mid-to-late August, and then I can get back to working on getting access to Genentech's new drug, T-DM1, which may be available in Seattle by then. I have a call in to the UW study coordinator asking about that. 

My medical team: My team has four members: my therapist, who prefers not to be identified on my blog, partly because she isn't taking new patients right now; Dr. Doug Lee, medical oncologist; Dr. Steve Eulau, radiation oncologist; and Dr. Brian Lee, cyberknife guy. 

These four all have excellent credentials and experience, and I chose them carefully. I trust them and feel safe in their hands. But even more important, they understand me. That is priceless. 

@ Jeanne Sather 2010. 

A Double Catch-22

What do you call it when you've been caught in TWO Catch-22s in one day?

A Catch-44? A Catch-22/22? Or just a damned mess?

I thought I was on a roll yesterday morning, making arrangements to fly to California for an appointment with the doctor, Dr. Ibrahim, who is heading up the T-DM1 clinical trial in Highland, California. 

I e-mailed the woman who will be making travel arrangements for my friend Monica and me. I e-mailed a hotel near the clinic to make reservations. And I e-mailed the study coordinator, Tricia Ramos, to ask her if she could make the appointments for the tests and scans I need to have done at the clinic where the trial is taking place. 

Tricia had already told me that the results of my tests and scans done at other facilities would not be acceptable, and I would have to have them repeated in Highland. She also told me that it would probably take two or three days to get these done. 

But when I e-mailed her to ask her to schedule them so that I could book my return flight, she said (THIS IS THE FIRST CATCH-22) that she couldn't schedule the tests and etc. until I had arrived in Highland and had signed the informed consent document in her presence. 

Think about that one for a minute. ...

How about I sign the document, which I already have, in front of witnesses--or even a notary public--and fax it to her? Nope. No dice.

According to Tricia, "the rules" require that I sign the doc after I arrive in Highland, and "the rules" also require that she not schedule my tests and so on (including an ECHO of my heart) until I have signed that document. 

She suggested that I plan to stay in the L.A. area for TWO WEEKS so that we could get all of this done. What happened to the two or three days she had told me earlier would be required to do the tests? 

So I mulled that one over for awhile, and then I thought that maybe I could go down on the 28th, as planned, see Dr. Ibrahim on the 29th and sign the informed consent doc in front of Tricia, and then fly home. 

One my second trip, I could get all the tests and scans and then also get my first treatment. Because presumably Tricia could schedule these while I was back in Seattle waiting for that first treatment appt. 

But before I could e-mail Tricia with this suggestion, she sent me another urgent message saying that I should not book my plane tickets or hotel until Dr. Ibrahim had a chance to check something with Genentech, the sponsor of the study and also the company that makes the drug, T-DM1. 

Now, I'm in the middle of four weeks of conventional radiation treatment to my right femur. I hadn't concealed this fact. In fact, I was the one who brought it up, because the documents that Tricia sent me about the study listed all the chemo drugs and other treatments that I would have to stop 28 days before my first dose of T-DM1. 

The document didn't say anything about radiation, so I asked, and I was told--and Dr. Eulau was told also during a phone conversation with Tricia last week--that 14 days needed to have passed between my last radiation treatment and my first dose of T-DM1. 

(HERE'S THE SECOND CATCH-22.) We counted on our fingers, and I was fine, but then Dr. Ibrahim had the idea that 14 days had to have passed between my final radiation treatment and the date that I was ENROLLED in the study, which would be July 29. He wanted to confirm that with Genentech, and that's why I was told to wait to make my reservations.

Now here's the punch line: The doctor was wrong. Genentech told him that 14 days needed to pass between my final treatment and my first dose of the new drug. We could have kept to the original schedule, especially if I only flew down for a day or two to see the doctor and sign the documents. 

Then I would have finished up my final few radiation therapy appts. and made arrangements for a second trip south to get the necessary tests/scans/etc. and also my first dose of the study drug. 

Annoyed doesn't quite begin to cover how I feel. I know, from my own experience and the many many stories I've heard from other cancer patients that screw-ups are to be expected with clinical trials, but this is not a confidence-builder, that's for sure. 

Next up: Time to do my due-diligence on this doctor and the clinic as well. Have they ever run a clinical trial before? I have no idea. Why did Genentech pick a clinic in the suburbs of LA that no one outside the local area has ever heard of? That didn't make sense to me from the beginning--what happened to all the major cancer centers that do clinical trials all day long?  Why not UCLA?