The Assertive Cancer Patient

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. 

It Was the Gatekeepers, NOT Dr. Lee

Those of you who read my post of July 15, My Doctor Fails Me, and were angry or indignant on my behalf, will be happy to know that Dr. Lee was NOT responsible. His gatekeepers refused (twice) to make an appointment for me to see him, telling me that his schedule was fully booked. 

I told them it was an emergency and asked them to work me in, and they refused. But they never checked with Dr. Lee at all, although the nurse told me she would. He was completely ignorant of the fact that I was upset and scared and needed to see him to get some questions answered. 

I'll write more about this tomorrow, because I am exhausted right now, but Dr. Lee gave me three separate ways to get in touch with him if the gatekeepers are refusing me access. More on that tomorrow. 

PS: I have an early (9 a.m.) appt. with Cyberknife Guy tomorrow morning. That's early, because I'll have to get up at 7:30 in order to take care of the pets, shower, drink two cups of coffee, and allow time for the morning rush hour. Plus, I normally sleep till 9 a.m., and it is very hard for me to wake up that early. 

I've asked a friend to call me to make sure I'm up. I don't want to follow Younger Son's example--he missed his flight to the East Coast on Sunday morning because he turned his alarm off and went back to sleep. Never mind that he was on his computer until 3 a.m. and his flight out was at 7:30 a.m. ... 

@ Jeanne Sather 2010. 

The Best Cure ...

No, I haven't discovered a cure for cancer, sorry. 

But I do know the best cure for the state I've been in for the past few days, ever since Dr. Lee told me in a phone call on Tuesday that my cancer is progressing pretty much everywhere. At least, this is the best cure for me: And it is to TAKE ACTION.

As I wrote yesterday, Dr. Lee's staff refused to get me in to see him so that I could get answers to my questions about the four tumors in my spine that are moving toward (or possibly pressing on) my spinal cord (you know, where all the nerves are). I also needed more info about the tumor in my sacrum that is causing the numbness and tingling down my left leg, and I wanted to tell him that I wanted to move ahead with all possible speed on getting into the T-DM1 trial in Highland, California. 

Does anyone seriously think I could wait A WEEK to get answers to these questions? 

I was lying in bed wondering if I was going to wake up and find myself paralyzed from one of the mets in my spine ... not a prescription for a good night's rest. 

So, this is what I've done so far:

Yesterday, my friend Laurie drove me up to Via Radiology to pick up the copies of my scans on disc to take to Dr. Eulau, my radiation oncologist. I had talked to Dr. E on the phone this week and we had also e-mailed a couple of times, and he said he needed the actual scans before he made any recommendations (of course). He said I should bring them to his office and they would work me in to talk to him. 

So we showed up at Dr. E's office at 2, an hour before I was due for my radiation therapy appt. (which is under Dr. E's care) across the street. 

Fortunately for me, his 2 o'clock patient had canceled, so he had plenty of time to talk. First, he took some time to study the scans, and then he called me in. 

The bad news: Of all the tumors that are larger (lungs, lymph nodes, spine, sacrum, and various other spots in the bone), he was most concerned about the one in my sacrum, which is 7 cm long. That is the largest tumor I have ever had. The one that broke my upper right arm way back when my cancer first metastasized was "only" 5 cm, and I thought that was huge at the time. 

We discussed, but did not make a final decision, about the best way to treat this one: conventional radiation, cyberknife, or with systemic treatment in the clinical trial (T-DM1). 

The other spot he was most concerned about is one of the tumors in my spine, at T-9, I believe. On the MRI I could see that the tumor is bulging out of the bone and appears to be touching the spinal cord. Dr. E says it isn't putting pressure on the spinal cord yet, or I would know it, but it is very very close. 

That one we can't radiate, because the area has already been treated with conventional radiation. So the options are cyberknife or the systemic treatment (or both, actually, cyberknife first, then the trial). Dr. Eulau is going to discuss the options for both of these trouble spots with my other two doctors, Dr. Doug Lee (Dr. Lee the First) and Dr. Brian Lee (Dr. Lee the Second, or Cyberknife Guy). 

Dr. Eulau agrees on my choice of T-DM1 as my next treatment, and he made a call to Tricia, the point person on the trial in Highland, because I couldn't move ahead on making plans to go there until one of my doctors had confirmed to them that my cancer has indeed progressed on my most recent treatment regimen (THAT's one of the things I wanted Dr. Lee to do for me on Wednesday ...)

I also asked him if Dr. Eulau's office could request all my treatment records for me, because I am going to need to take those to California with me, and he said they could do that. 

Then we went across the street to the Gowned Waiting Room, and I got my zap. 

On the way home, Laurie suggested a milkshake, and we picked up shakes at Kidd Valley (they have the best--McDonald's shakes don't begin to compare--not that I ever eat at McD's) and then I came home and collapsed on the couch. But my day wasn't done--I also had a long e-mail from Tricia, answering some questions I had e-mailed to her the day before, and then I called her and we talked for a while. 

By the end of the phone call, I had a tentative appt. to be seen by one of the study doctors in Highland on July 29. 

Then I had to check with Monica, who has agreed to fly with me, and Megan, a friend in the L.A. area who had already offered me a place to stay, to see if those dates would work. 

They do, and I now have a firm appt. with Dr. Ibrahim on July 29. 

Next task: To find free airline flights. I have been told that the American Cancer Society will pay for one free flight for a cancer patient and companion to travel for medical treatment, but I sure can't find that info online. If anyone has the contact info for this program, please e-mail it to me ASAP. 

Second task: To gather up ALL of my medical records for the past 12 years, which are at three different cancer centers. This is going to be fun!

But I've already asked for my records from Swedish, I'm going to go in and get the records from Dr. Lee's clinic on Tuesday, and then I will tackle the U of Washington/SCCA--these are the folks who, last time I requested a complete copy of my medical records, which were three binders thick, gave me only about one sixth of the total pages and they were out of order and pages were missing. They also didn't contain the info I needed. 

That will not happen this time, if I have to stand over them and mark every page. 

Friday

Plans for today? To take it easy. I have a necklace to mail and a couple of things to pick up at the grocery store. I'll do these errands on my way to treatment, and yes, I have a ride. My friend Linda, mother of Megan (the college student), is driving me. 

@ Jeanne Sather 2010. 

Bad News

Well, the news from my scans (PET/CT and MRI) yesterday wasn't good. 

In fact, it is bad. 

The falling CEA tumor marker that we were so happy about over the past couple of months was--obviously--not accurate, and my cancer has been progressing merrily, pretty much everywhere: 

I now have three tumors in my right lung, up from two, and they are larger; there are new tumors in my lymph nodes, and some of the ones that were there before are larger. In addition, tumors are moving out of the bone and toward the spinal cord in four places in my spine. The numbness in my left leg is caused by a tumor also, but I forget exactly where that one is.

Dr. Lee called me with this news today, and then I talked to Dr. Eulau on the phone as well. We don't have a plan yet, and Dr. Eulau and I are both aware of the risks of my having any more radiation ... so he is going to look at the scans (so far, he's only seen the report, not the actual images) and then we'll talk again in a few days.

I'm going to call Dr. Lee back tomorrow and ask him about getting me started on the T-DM1, which I think is my best bet right now. 

Meanwhile, it is a beautiful evening in Seattle, and I am sitting here with Younger Son on his 20th birthday (today is his real birthday, we celebrated early), eating the party food he prepared for his friends, who have been stopping by to see him. We're also going to talk about his trip to Japan, which is coming up in August. 

I plan on staying off line for the rest of the day, and maybe tomorrow as well.  As always, no suggestions or advice, please. 

@ Jeanne Sather 2010. 

  

Still Waiting ...

I called Dr. Lee's office first thing this morning to see if he had the results from my PET/CT and MRI from yesterday, but NOPE. The nurse searched on his desk and also on the fax machine and she couldn't find them. 

So now I'm waiting for him to call me, and trying to make some jewelry at the same time.

@ Jeanne Sather 2010. 

Back on the Teeter-Totter, Yet Again

I've been riding that teeter-totter again, for a couple of weeks now, if I'm being completely honest, but I didn't want to admit it to my friends or my doctors, and I certainly didn't want to write about it.

But now it's time. 

(Here's what happened last time: Riding the Roller Coaster, Again, in case you missed that one.)

Let me explain, without the playground and amusement park images ... 

A couple of weeks ago, I noticed some numbness and tingling in my left foot, mostly on the bottom of the foot, behind my toes, but also a bit on the top of the foot. Now, I had a problem with this foot about six years ago, when one of the bones in the metatarsal arch dropped, causing me lots of pain. I saw a podiatrist, he made me a pair of custom orthotics, and I wore first a boot and then the orthotics and within a month or two the problem was solved. 

The orthotics only fit in my running shoes, so since the problem went away, the only time I wear the orthotics is when I have these shoes on. Most of the time I wear slip-on shoes, because we don't wear shoes indoors and I like to be able to take my footwear off easily, without bending over. 

Anyway, when I first noticed this problem, I started wearing the running shoes more often, especially when I walk Connie, because--let's face it--they give me greater stability and my balance isn't all that great. And I thought, always optimistic, that the numbness might go away. 

However, I was aware that this could be a sign of a tumor pressing on my spinal cord, because Dr. Lee had warned me about this years ago. He told me to take any numbness and tingling in my extremities seriously, because it could mean paralysis if we didn't deal with it promptly. 

( A side note: I've had tumors in my spine ever since my cancer metastasized--something like eight or nine years ago now. We watch them, and a couple of them have already been radiated, but I know they are there, and--next to a brain tumor--they are my biggest worry.)

But I talked with Dr. Eulau, my radiation oncologist, before I had a chance to see Dr. Lee, so I asked him about it, and he said, let's wait and see for a bit. So I went with that advice, since I had things going on--Younger Son's party, friends visiting--and I wasn't quite ready to deal with it. 

By last Friday, two days ago, I was ready to deal with it, and the numbness/tingling had moved UP my leg, so that parts of my upper leg and hip are numb, but only on the surface, not in the muscles. Oh, I forgot to mention, I have a PET/CT scheduled for tomorrow, it's been on my schedule for a couple of weeks, so I thought I could wait till then to see what was wrong ... but on Friday I decided I needed to talk to my doctors.

I called Dr. Lee and talked to his nurse a couple of times, and the upshot of that was that I now have an MRI of my spine scheduled for Monday afternoon, after the PET/CT, but at the same facility, thank goodness. (This involved changing my radiation therapy appt. to the morning, so that I can spend the afternoon getting scanned.)

Dr. Lee's nurse also told me to go to the ER over the weekend if things got worse, but when I pressed her about what exactly "getting worse" meant, she couldn't give me a clear answer. So I asked, "You mean if I can't walk?" and again she was vague. 

I also asked who was on call over the weekend, hoping of course for Dr. Lee, but neither he nor the other doctor in the practice I know, Dr. Tolman, is on call, and I resolved at that moment NOT to go to the ER if I could help it. I don't need a doctor who doesn't know me taking care of me at this point. And I doubt they could do much but put me in the hospital and wait for the scans on Monday anyway. Or maybe do some scans at the hospital, if those folks work weekends, but then they would be on different machines and read by different people--not recommended. 

I also e-mailed Dr. Eulau, the radiation oncologist, to let him know, and asked him what "getting worse" meant in this case, and he explained that any weakness in that leg would be a bad sign, and I should go to the ER (his or Dr. Lee's, we didn't clarify, but in theory I could go to the ER at Northwest, a hospital and ER I'm familiar with, but then have them page Dr. Eulau, even though he is at Swedish. I think that would work). 

Those of you who have lived with this kind of uncertainly will understand what kind of a weekend I've had. I worked in the garden in the morning yesterday, mostly just watering, and then crawled into bed for the afternoon, even though I had planned to go to a neighborhood party. On top of everything else, I had a couple of bouts of bad diarrhea (probably from the heat plus Tykerb), so I figured I had better lie low and hydrate, which I managed to do. 

Today, which is cooler so far, thank goodness, I plan to stay inside unless I take a short walk to the bookstore, and I will take Younger Son with me if I do that, and my cane, just in case. But my leg doesn't seem any worse today, and I think I can make it to tomorrow. 

The boys have not been very helpful lately, and they've been giving me grief--and not coming through for me when I do ask them for help, but today I need to enlist both of them. 

I've already sat Younger Son down and explained all of the above to him, and told him that I need his help today. I told him he was to stay off his computer until after I go to bed at night, because that is my greatest competition for his attention. He's been spending upwards of 10 to 12 or more hours a day online for the past week, playing games and getting involved in various bulletin boards and chat rooms. Every time I ask him to do something--even something he's already said he will do--I have to pull him away from the computer, and this is beyond annoying. 

We'll see if he can do a better job now that he understands what's going on.

Older Son has been working very hard during the week and then partying even harder on the weekends. He sleeps past noon and he doesn't do the chores he's committed to doing every week, including cleaning the cat area--never mind that this is his cat and I am not supposed to clean cat boxes. 

He's also been giving me grief when I ask him to do something for me, like yesterday when I asked him to go to the grocery store because, with three of us home and only me doing any shopping, the fridge is pretty much empty and we are out of the drinks I need to hydrate: sparkling water, juice, milk, and soups. 

I'm going to give Older Son another half hour to wake up, and then he and I are going to have the same conversation. Not sure what I will do if it doesn't work ... 

Monday's Plan

Tomorrow, I plan to take Younger Son with me (he doesn't drive, but at least he will be company if I get into trouble) when I go for my radiation appt. at 11 and from there to Via Radiology for my scans. I am supposed to fast in the morning, and I need to read over those instructions again, but I can take a lunch to eat after the PET/CT and before the MRI. 

I'm also thinking that I will call Dr. Lee's office in the morning to see if he is working tomorrow (He has every other Monday off). If he is, I'm going to ask if I can come in at the end of the day to see him and go over the test results, because I think he will have them by then. 

So that's the plan.

As always, no advice or suggestions, please. I don't need that kind of input--it is NOT helpful. I have this under control, and despite being afraid, I am as strong as I've ever been, emotionally.

Support and solidarity are always welcome. Thanks. 

@ Jeanne Sather 2010.  

 

Good News!

When you live with metastatic cancer, there is nothing quite like going to your oncologist and getting unexpected good news!

I am high as an escaped balloon after hearing from Dr. Lee that my CEA (tumor marker) is continuing to drop. This should mean less cancer activity, and it is now about 75, down from a high of 145 or so a few months back. Or course, the closer to zero it gets, the less cancer I have. 

Still, I've been anxious for the past several weeks about the possibility that my CEA is not accurate, and so we decided to have me get a PET/CT within the next couple of weeks, to confirm the good news. Or rather, we hope the scan will confirm the CEA.

My weight continues to drop, although a bit more slowly. I was down another pound and a half from what I weighed three weeks ago, and Dr. Lee is not sure why. So another reason to do the scan. He doesn't see why I shouldn't have an appetite if I am feeling better. 

What I notice, besides being able to fit into clothes that haven't fit for the past year or two, is that I have lost muscle mass as well as fat, and my balance is pretty poor.  I don't like either of these things, and I'll do my best to fix them.

Dr. Lee was running way behind today, so by the time we had finished our appointment, it was too late for me to get treatment. So I have to go in tomorrow morning for that, and then in the afternoon I have the set-up appointment for my next series of radiation therapy treatments. 

Tomorrow is going to be an all-cancer, all-the-time sort of day, but I think I'll get through it OK. And then Younger Son gets home from China on Friday. I can't wait. I stocked up on frozen cheese ravioli and three kinds of cheese to make the cheese sauce the way we like it. We both need the calories!

@ Jeanne Sather 2010. 

 

Riding the Roller Coaster, Again

Yesterday turned out to be one of those days, so I guess it's no wonder that I slept until 10:30 this morning!

Actually, the day was more like playing on a teeter-totter than riding a roller coaster--remember standing on the seat of a teeter-totter (or see-saw) and then someone would jump off the other end and you'd go flying? 

Well, that was how my day went: Up and down with lots of bumps. I did manage to keep my balance, though, and I feel fine today. 

First was my phone conversation with Dr. Eulau about the results of my X-ray: He said there is erosion in the bone in my right femur because of a tumor. Treatment? Four weeks of daily radiation. Argh--there goes my summer!

Then I went off to see Dr. Lee, my lovely medical oncologist, and to get treatment, which these days is Avastin and Herceptin by IV every three weeks, plus oral Tykerb daily. 

Dr. Lee came in all excited about my CEA (tumor marker), which has been dropping, but I had to tell him about the news from Dr. Eulau.

This didn't make him happy--or me either, when he explained--because he said if I had disease progression on my current regimen (as indicated by this tumor), then the CEA might not be accurate. 

The short version is that he wanted to talk to Dr. Eulau to discuss a couple of things, and also he wanted to scan me from tip to toe, in case my cancer is progressing despite the falling CEA. 

So I agreed to have a PET/CT, a bone scan, and an MRI of my head, all next week, and Dr. Lee left a message for Dr. Eulau to call him. 

Then we discussed the smaller problems I've been having--dehydration, again; a stomach ache; lack of appetite; and a sore tongue. I also told him about the meeting with the social worker from Hospice and gave him her contact information. 

And then I went off to the treatment room, which was popping--all the chairs were full, and one poor woman, in a wheelchair, was sitting there parked, waiting for a chair to open up. 

Dr. Lee ordered a bag of fluid along with my Avastin and Herceptin, and the nurse ran them at the same time, which saved me an hour in the chair. 

Then, while I was sitting there, Dr. Lee came in, all happy again, and said that he had talked to Dr. Eulau and that they didn't have an "apples-to-apples" comparison for the X-ray on my femur (the earlier scans had been CTs and so on), so they couldn't say for sure that this spot wasn't there from before the time I started the latest treatment regimen in February. 

So, no need for all the scans, which Dr. Lee promptly canceled, but the two doctors agree that I need to do the radiation, sooner rather than later.

See what I mean about the teeter-totter?

@ Jeanne Sather 2010. 

 

Some Good News, for a Change ...

I went in to see Dr. Lee today, and also to get treatment (we're calling it targeted therapies light: reduced doses of Herceptin, Avastin, and Tykerb--the only one that bothers me is the Tykerb), and of course I had my list of questions for Dr. Lee. 

But he had a surprise for me: My CEA (tumor marker) has dropped substantially in just a couple of months! 

That means less cancer in my body. 

Now, I had asked to have this test a few weeks back, but with everything else that was going on, I kinda forgot about it. 

It was great to get some good news for a change. Dr. Lee said he wasn't sure why my marker had dropped so far, but we agreed that the radiation I had in January had probably reduced the total volume of cancer, or my tumor load, so the marker dropped. And the treatment I'm on is also doing me some good. 

I still have moderate disease progression in some places, like my right lung, but in other places the tumors are stable. 

As long as I continue to recover from my latest hospitalization and my energy keeps climbing, I will have both the physical and the emotional energy to chase after the new drug, TDM-1. Because getting access to the drug, whether in a clinical trial or through a compassionate use program, is going to be a lot of work. I'm not kidding myself about that. 

But, being the optimist I am, I think it's safe to say that I'll be around--and blogging--for another year. That may not sound like a lot of time to some of you, but it feels like a huge gift to me. I still have a book to write, after all!

That doesn't mean that I won't keep working on my end-of-life planning, because I need to have that in place, for all our sakes.

@ Jeanne Sather 2010.