The Assertive Cancer Patient

Mammogram Today

One of the things I hate most about living with cancer is all the tests and scans. They take too much time out of my life, and they make me anxious.

I just got home from having my annual mammogram on my left (one-and-only) breast.

The test itself isn't bad, although that final twist of the clamp HURTS, and I'm not too worried about the results, even though I know one in 10 women who have had breast cancer in one breast get a second cancer in the other breast at some point (not sure what the stats are for women like me, with metastatic disease--I always figure they should be lower, because I'm doing chemo most of the time) ...

So why was my blood pressure up around 150 over 90 (I'm guessing, but that's how high it felt)? Major wave of anxiety during and after the exam.

Of course, I know the reason: flashback to how my life with cancer started, with a mammogram.

But in the nine and a half years since then I've gotten better at recognizing and coping with anxiety. So I decided to walk home--exercise really helps get rid of the physical effects of anxiety, and I called two of my closest friends and left them messages about what was going on.

One called me back a few minutes later and we talked as I was walking, until I got to a bridge over the freeway and couldn't hear, so had to hang up.

I stopped on the way home and bought a healthy burrito (Taco del Mar--is there any other kind?) for a late lunch/early dinner, and after I feed the kittens I'm going to crash out and read for awhile.

Today's experience was kind of funny, because just this morning I'd gotten an e-mail from a woman with metastatic breast cancer who has just started on Tykerb and is having a tough time with it. After asking me to compare symptoms (we cancer patients do that a lot with others on the same drugs), she asked how I managed to stay so upbeat all the time.

Here's part of my reply:

I don't stay upbeat all the time. No one could. I write about the bad days, too. And sometimes, like last Monday, I just have to take a day off and stay in bed and give in to all the bad feelings, depression, whatever. And I also have a really good therapist, and friends who will listen to me rant and rave if I need to. And the blog has been great, because of the friends I've met.

It's really tough. Just do the best you can and don't beat yourself up about it if you have a bad day or bad week or whatever.

The last thing I want is another cancer patient feeling bad because she thinks she isn't coping as well as I am. That's not what my blog is all about. And she's having a hard time right now, and I'm sailing along fairly well. Except for the post-mammogram blues, which are pretty much gone.

@ Jeanne Sather 2008.

Question About Tumor Markers

A reader posted a question about tumor markers to my blog the other day.

Here's what she wrote:

... Do you know how high the CA 27-29 tests can get? My mother-in-law has breast cancer that has metastasized to her bones. She has already had a spine surgery and also most recently a break in her right leg. Her level has increased dramatically in the last few months.

I have not been able to see how high the markers can get. I appreciate anything you can tell me as it seems that you are very aware of the various tests/markers. I also hope you are doing well.

Regards, Jill

Well, I didn't know the answer, so I e-mailed a couple of my doctors, and here is what Dr. Livingston (in Tucson) said:

Numbers in the hundreds are not uncommon for CA 27.29, usually much lower for CEA if it is elevated. But the absolute level of the tumor marker is not an indicator of how much disease someone has. What is important is whether it is elevated, and if so, whether it is going up or down.

Jill, I hope that helps.

Also, there is my recent experience with my tumor marker (the CEA), which is that it has been in the normal range for months, but I still have several active tumors. Three, actually. They showed up on the PET/CT.

Here's the post that Jill added her comment to:

Tumor Marker: Good (No, GREAT) News, for a Change

And my post about my most recent PET/CT:

The PET/CT Results: Disappointing

@ Jeanne Sather 2008.

ASCO and a Better Mood

Well, my strategy seems to be working.

I finished writing my application for a grant to go to the ASCO conference in Chicago as a patient advocate, and sent that off, and that improved my bad mood by quite a bit.

As did all the supportive comments on my blog and in e-mails. Thank you all.

So now I need to move on and get the guest room clean, walk my dog, and go to the post office. Just the ordinary things of life.

ASCO
That's the American Society of Clinical Oncology, and some 30,000 people, mostly oncologists, I imagine, will be gathering for this meeting in Chicago in late May and early June. The downtown hotels are already sold out, so if I go I will have to stay at an airport hotel. Apparently there will be free shuttle service.

Here are some of the sessions that I plan to attend:

** Communicating Prognosis: How Oncologists Can Be More Effective
(I know Tony Back, the moderator for this one, and have made presentations with him several times in the past, including one to medical students at the University of Washington Medical Center. Baby doctors, I call them.)

** Integrating the Humanistic and Scientific Aspects of Patient Care: The Perspective of Seasoned Surgical, Medical, Pediatric, and Radiation Oncologists

** Access to Investigational Drugs Off-Protocol: What Do We Owe Patients?

** Conflicts of Interest in Oncology: Understanding the Problems and Finding Solutions

** Recognition and Management of Medical Errors in Oncology

** Erythropoiesis-Stimulating Agents Use and Overuse: How Do Oncologists Negotiate Conflicting Demands?

Great titles, huh? (NOT.)

I was looking for more on clinical trials, like how to get cancer patients to enroll in clinical trials, because I have some thoughts on that, and also some sessions on psychosocial issues, which I didn't find at all. I want to suggest that someone should do a psychosocial trial about stress over medical bills and patient outcomes.

I'll take the info I have on that along with me to the conference, because I might meet someone who is interested, and of course I will have my laptop so I can blog about all of this.

Go to the ASCO site to read about the conference: ASCO

PET/CT--Thanks for the Support

Friday morning. It's pouring down rain, and dark. My mood is still shaky, but I know it's the kind of mood that needs me to be busy and productive to improve. So today my plan is to write my application for a grant to go to ASCO (the big oncology conference) in Chicago this summer as a patient advocate.

Luckily I got a start on the application earlier in the week, because it's due next Monday, and my head is a bit fuzzy from being upset over the PET/CT results.

Once I get that done, I need to clean the so-called "guest room," where I've been sleeping for the past year (don't even ask what happened to my bedroom), so that a real guest can stay there next week. She's arriving on Sunday, and I'm having the carpet cleaned Saturday, tomorrow, to get rid of all the dog hair--the two dogs generally sleep in there with me. It's like the Bat Cave. Piles of books all around the bed.

So that's the plan for the day. If--a big IF--I have the energy, I'm going to tackle the problem of the Corvair--the mechanic keeps finding new, expensive problems to fix, and by this point (five weeks and counting), I think he's scamming me. So I'm going to ask another mechanic to talk to the first mechanic and tell me what he thinks.

But that takes energy, and focus, so I haven't gotten to it.

Thank you all
But this post was really meant to be a big thank you to all of you who read yesterday's post and respected my wishes for the kind of support that I needed (and need) right now.

One friend send me a one-line e-mail: "I send love, b."

Another offered a trip to the bathhouse one morning next week. (See: Women's Bathhouse)

And you can read the comments from my online friends here (scroll down to read the comments): PET/CT

Then there was an e-mail from Anna, a young woman with breast cancer who first got in touch with me about a year ago.

This is what she wrote:

I’ve been keeping up with your blog since I had DCIS about this time last year and I wanted to say I’m sorry to hear you were disappointed with your PET/CT results. I had a small, “probably benign” spot on my last breast MRI and it was simultaneously infuriating and totally disappointing. I’m 25 so I have spots on my MRIs and mammos all the time, but this was when I finally had three whole months without a biopsy or anything so I was pissed. I know that’s not the same thing as what you are going through, but I understand that scary, frustrated, angry feeling that comes with all the tests.

Your blog has been a great source of information and strength for me. I first found it when you made the buttons which I LOVE and which you were kind enough to send to me a while ago. I got quite a few comments about them at school. I hate all the pink marketing. I mentioned not really appreciating all the pink ribbon crap at a support group at my local hospital when I was first diagnosed and I couldn’t believe the response I received. I had one woman tell me that I wouldn’t understand because I *only* had DCIS (the woman who told me this was in her 60s with two adult kids and doesn’t have to think about breastfeeding, fertility, etc.) and that if I didn’t appreciate the community maybe I didn’t need to be there.

The moderator handled it well but it was an abrupt lesson at a bad time, so I was THRILLED to come across your blog and find I wasn’t the only one who thinks turning a disease into a marketing opportunity is sad and disappointing. Reading about how you handle these challenges with dignity, strength and a sense of humor has been enlightening and made this process just a little easier. I’ve struggled to find a relevant community that speaks to my experience as a young woman who has had an initial stage of breast cancer and I keep returning to your blog. It keeps me thinking positive without any of the saccharine pandering I’ve encounter elsewhere, and it reminds me that it’s not unreasonable for me to expect certain things from my doctors.

I’m BRCA2+ so feel free to e-mail me if you do the test and want to talk about it at all. It’s good information to have and for me it helped answer the whole “why the f*ck is this happening” part of everything, but my dad took it kind of hard since it’s from his side of the family. Navigating when and who to share that information with can also be a challenge.

Be strong, give yourself time to be disappointed, but keep us updated and know that you’re helping by sharing your story.

OK, so there was a little bit of advice in there, but it was gently given, helpful advice, and it WAS helpful.

Note how she was attacked at a SUPPORT group for stating her opinion about pink ribbon crap? Ouch! That is not supposed to happen. But then, I'm not a huge fan of support groups.

@ Jeanne Sather 2008.

The PET/CT Results: Disappointing

This is a really tough post to write, because I'm upset.

I was hoping that the PET/CT I had on Monday would confirm the low tumor markers I've been having for the past four months--CEA (tumor marker) numbers that were in the normal range, meaning that my cancer was gone.

Well, I'm an optimist, and I liked that idea: That my cancer was in clinical remission with no active signs of disease, so I ran with it--in my own head, at least.

But that's why you never rely on one test alone when dealing with metastatic cancer.

The scans show that I still have at least three areas (we don't use the word "tumor" much around here) that light up, meaning that there is cancer activity there: one in my spine (T-11) and two in my pelvis. These are almost symmetrical: one is on the right posterior ilium and the other on the left anterior-superior iliac crest. (Please don't e-mail me and ask exactly where those are: Either look it up, or accept that they are in the pelvis and that's enough information.)

None of these spots is very large. They are either stable or show slight progression since my last PET/CT in November, despite the regimen of Tykerb and zometa. None of them is of any immediate danger to me, and I am not in any pain.

OK, so I am upset. When I finish this post, I am going to get into bed with a book, something to eat, and the companionship of the two dogs. I will be turning off the phone.

But really, it's good news
If you look back over my cancer history, I probably have fewer mets now than at any time since my cancer first metastasized to my bones--then I had more than a dozen. Maybe 20. I never asked Dr. L for an exact count, because it creeped me out too much.

And, as I said, these are small, not causing any pain, and are not in places where they are likely to cause a fracture. The only one I'm worried about at all is the one in my spine, because if it grows out of the bone, it could paralyze me--but it's not there yet. I saw it on the scan.

So, Dr. Lee and I went over the report, looked at the scans on the computer, and then discussed what to do.

What next?
He suggested putting me back on Avastin, in combination with the Tykerb and zometa, to see if we can shrink these spots even smaller, or at least keep them from growing, because they are growing on my present regimen.

I agreed to this.

I also still need to get a mammogram on my remaining breast, and we scheduled that for a couple of weeks out. Women who have had breast cancer in one breast have a 10 percent chance of getting a second, unrelated (not a metastases, in other words) cancer in the other breast.

So it's no use thinking lightening can't strike twice.

He also suggested that I get the BRCA test, to see if I have one of the genes that increases your risk for breast and ovarian cancer--oh, and colon cancer. The reason for this is that I was diagnosed at a young age (43), and my brother was diagnosed with colon cancer in his early 50s and died of it at 54.

So if I have the gene, I would be at greater risk for ovarian and colon cancer, but also Younger Son (the biological child) could be a carrier of the gene, and my sisters would also need to be informed so that they can increase their diligence.

That test is just a blood test, so I'll have it next time I'm in.

Then we discussed a colonoscopy, which I haven't had, despite my brother's colon cancer. Dr. Lee was straightforward, which is how I like my doctors to be--and he said the question really is: Am I going to live long enough that colon cancer is a possibility?

We decided that the answer is yes, so I will get the test. The other reason is that if I do have early stage disease, polyps, it can be cured very simply.

So I added a colonoscopy to my already full medical schedule for April and May.

What else? I gave Dr. Lee the posts I've written about cancer patients preferring to e-mail rather than call their doctors, complete with all the comments you folks had added, and told him this was a very polite request from me that they consider allowing patients to e-mail rather than call.

He was totally sweet about it, and said he would give it to the practice manager! So I will keep you posted on that.

OK--If you are new to my blog: DO NOT e-mail me with suggestions or advice of any kind. DO NOT suggest treatment regimens, alternative treatments, or anything else. I am not looking for advice.

Also, FOR NOW, please do not e-mail me with any questions about my disease status or these tests. I don't want to talk about it right now.

As always, messages of friendship and support (without the standard cliches, please) are always welcome. Please understand if I don't reply right away.

Thank you all for understanding, and for being my family.

@ Jeanne Sather 2008.

The Happy PET/CT

Usually, tests or scans are times of high anxiety for me, as they are for most--probably all--people living with cancer.

For days before a test or scan and then for the days afterward until I get the results, I am spacy, stressed, and scared.

But not this time. I went in for a combined PET/CT scan yesterday, and for the first time ever I was looking forward to it.

The reason?

I expect the results to confirm my low tumor markers (a CEA of 1.2, 1.7, and so on) of the past few months. Those CEA numbers are in the "normal" range, which means NO ACTIVE DISEASE. If the PET/CT confirms that, I will be in clinical remission for the first time in something like four years.

So this is a big deal. Of course, clinical remission doesn't mean I get to stop treatment. No such luck. If I did that, the cancer would be back, fast.

The nice folks at Via
I get my scans at an independent clinic in north Seattle called Via Radiology. My oncologist, Dr. Lee, is at Northwest Hospital, which has apparently decided not to invest in spendy PET/CT scanners, and he sends his patients to Via.

I talked to my technician about this, because I'm always interested in cancer care as a business, and she said that Via opened with the latest and greatest in scanning equipment (including an MRI machine large enough that I can get MRIs there--no claustrophobia) when most cancer centers in town didn't have the combined PET/CT.

Now, the Unversity of Washington has two, I believe, and SCCA (partly owned by UW) has one. Swedish cancer center has at least one.

So there's lots of scanning capacity on expensive machines chasing a somewhat limited number of cancer patients.

She said that Via has to compete by offering the best customer service, and I have to say that I have always had good experiences there. While at the University of Washington Medical Center, I was once left lying on a guerney in a cold, drafty hallway for the hour that you have to wait after taking a dose of Valium before the scan can begin.

I felt like a dead body lying there with people passing by.

One thing that had bugged me in the past was that each time I go in for a scan at Via, I'm given the same four or five pages of medical history forms and so on to fill out. Well, going though my medical history stresses me out, plus I know they already have this info., so I've started writing "see records" and "You have this information" on the forms and signing them.

But this technician, before she even saw my copies of the forms, had gone and checked my medical history, so the only things we needed to discuss were the changes since my last PET/CT in November.

Much less stressful.

Most cancer patients probably don't realize that they don't have to get their scans at the cancer center where they get treatment. Of course, that's usually the most convenient place to get them, but if, for example, you are claustrophobic and can't do conventional MRIs, you can go to a clinic that offers open-sided MRIs, or to a place with the newer machines, which are larger.

Oh, so the next big thing: combined PET and MRI machines. Watch for them at a cancer center near you.

After the scan
No need to describe the scans. The whole process took something like four hours, and when I was done, I was still loopy from the Valium, so I decided to walk home. I'd taken a cab there, since I knew about the Valium, and my car is still at the shop. The mechanic found yet another expensive, essential repair--I'm getting on this in the next day or two--I think I'm being scammed.

Anway, back to me. It was 5 p.m. and I hadn't had anything to eat since the night before, so I popped into a little doughnut shop and treated myself to a glazed old-fashioned for the walk home.

Yum. And I walked, in the rain, all the way from the corner of Meridian and Northgate Way to my home in Ravenna. I estimate the distance at five miles, at least. It took me an hour and a half, and I was pretty wet by the time I got home, but my head was clear and I felt so very alive.

Results on Thursday
I'll post something once I see Dr. Lee on Thursday.

@ Jeanne Sather 2008.

Tumor Marker: Good (No, GREAT) News, for a Change

It seems like I haven't gotten any really good news on the cancer front for so long, that I've almost forgotten how to react. Or maybe the news was such a surprise that I was just frozen there for a moment, unable to take it in.

The good news is that, on Friday, when I went in for my zometa (chemo drug, keeps the bones strong) I saw the doctor who was subbing for Dr. Lee, who was at a breast cancer conference in Texas, I believe, and he (Dr. Tolman) told me that my latest CEA was 6.6.

Uh, huh.

The CEA is a tumor marker, a test that is done using blood. There are two tumor markers for breast cancer, CA 27-29 and the CEA. I don't know about other types of cancer, so if you do know, leave a comment for me.

In any case, the tumor markers are tricky tests. They are not always accurate, so you never rely on a tumor marker alone. In the old days, my doctor was following me with the CA 27-29, and it was perfectly normal at the time my cancer metastasized and I had a couple of dozen tumors in my bones, including a huge one that broke my right arm.

In my case, we follow my disease with tumor markers (now the CEA, which has been accurate for me) and PET scans, with an occasional scan of another type throw in for good measure--bone scan, CT, MRI, alphabet soup time.

A CEA of less than 5 is considered "normal," as in "no active signs of disease," so, delighted as I am about this news, I am also cautious. I think the test might be wrong.

The reason I think that is that the blood for this tumor marker was drawn before Thanksgiving, so before I started Tykerb and before I started the most recent round of radiation to treat two tumors in my spine and the one that broke a rib.

It seems to me that if I have that much cancer going on, my marker couldn't be this low.

So I am cautiously happy about the result, and am really looking forward to getting the results of the tumor marker that we drew blood for on Friday. If that one's low as well, I guess I'll believe it.

My CEA has been as high as 60 (scary), and was in the 20s while I was on my chemo break. I never expected to see a number this low again.

I really liked Dr. Tolman (not that I'm switching from Dr. Lee, but it's good to know that he has a great backup), and we also talked about how to manage the dose on the Tykerb, and about the latest news on Avastin and breast cancer, so I'll have a post up about that soon.

@ Jeanne Sather 2007.

Leaving My Bad Mood on the Blog (I Hope)

Yesterday was one of those days.

It was cold. It was raining. I wasn't sick, but I felt like being sick.

So I e-mailed First Place and said I would not be coming in to do my Japanese teaching gig with the kids (something I normally love to do). And I went back to bed with a book and various easy-to-digest foods, including a plate of pancakes.

Just slept and read, hoping to get over my low-energy bad mood before it turned into full-blown depression, which I am prone to.

Reading material, Ivan Doig, wasn't the best, because it is about a lost time and place: Montana from the days of the homesteaders forward. Doig's work makes you mad, to read about people losing their farms and ranches, but it also makes me (at least) feel powerless. Not a feeling I cherish. But beautiful prose, which I am hoping will influence my writing for the better.

I know what the problem was, and I'm hoping that spelling it out clearly here on my blog will help it blow away on the wind, rather than linger to get between me and the things I want to do today.

The problem is that big shoe (I think it's a running shoe) that is always hanging over my head, waiting to drop. The shoe, of course, is bad news about my cancer. In my case, living with active, metastatic disease, there is ALWAYS bad news on the horizon, and I live day-to-day with this over my head.

Most of the time I can cope. Sometimes I can't. But what I realized, again, yesterday, is how hard it is to live with the suspense. I know this cancer will kill me, probably sooner rather than later, and sometimes I want to just get it over with.

But I don't really want to jump off a bridge. I just want to find a way to live with the suspense.

Enough. I'm getting dressed and going to walk Connie. When I get back, I'll let you know whether the bad mood has blown away.

11 a.m. Update
The walk in Ravenna Park with Connie helped (photos of this beautiful park to come), and also made it clear that I need to get a light box. Strong daylight definitely helps my mood. Still a bit fragile though, going to eat some oatmeal and then go back outside to clean up the backyard--exercise and sunshine, that's my prescription for myself.

@ Jeanne Sather 2007.

Gearing Up for Chemo

Well, as those of you who have been reading my blog for some time will recall, I managed to get a four or five month break from chemo over the summer and into fall--the first chemo break I have had in five and a half years.

Ever since my breast cancer metastasized to my bones, I've been in continuous treatment. The mix of drugs has varied, as has the frequency of treatment: sometimes every week, sometimes every three weeks.

The list of drugs that I have received during this time has included Herceptin, Avastin, Taxol, Navelbine, zometa, oral cytoxan, and more.

Of course, the past few months weren't a total break from cancer treatment: I had a problem with my right arm during that time, and I also underwent three weeks of radiation therapy to my pelvis and the top of my left leg. And I went in for regular blood draws and scans.

I was supposed to start chemo again several weeks ago, but I just wasn't ready. I was tired and anemic from the radiation, my brother had just died (of cancer), and I was in the midst of the media firestorm surrounding my search for a Canadian husband.

I hadn't had the time to do what I call due diligence about the new treatment regimen that was proposed for me.

So, I called my oncologist's office and told them that I would come in for the blood draw and to talk with my oncologist, Dr. Lee, but that I wasn't ready to start treatment again, so please cancel the treatment appointment.

When I saw Dr. Lee, I told him all of this, and also said that I just wasn't emotionally ready to go back on treatment quite yet.

And guess what? He got it. No pressure. "Whatever you want to do," he said.

To which I replied, "You are my kind of doctor." Which is true.

But now, it is time to stop procrastinating and sit down and read the stacks of materials I have on the new drug I'm going to try, Tykerb, and make the phone calls I need to make to the pharmacy that provides the drug (it's in limited distribution, apparently). I already know that my insurance, WSHIP, will pay for Tykerb. (Not all insurance companies wll.)

So today I stacked everything I have in a neat little pile on the dining table, ready for me to tackle tomorrow. That's enough for one day.

Now, I think I need a walk for some fresh air, and then a nap. This is exhausting--facing up to what I need to do.

On the pink ribbon front: don't worry, I'll be back to that within the next few days. I have lots of letters to write to companies, explaining why I am boycotting their products and calling on other breast cancer survivors to do so as well.

Note: If you are a new reader to my blog, please be aware that I do not like people giving me unsolicited advice. Do not e-mail me with suggestions for drugs, treatments, or any other solutions to my problem(s). If you would like to leave a comment about your own cancer, or your own solution to a problem, that is an entirely different thing.

Quacks, and others selling cancer cures, please stay away. Do not post ads for your products or links to your Web sites. I am not interested, and I will take these down immediately. I will also add you to my Quacks Hall of Shame.

@ Jeanne Sather 2007.

Writing Students Wanted

I'm teaching a class in nonfiction writing at the University of Washington Extension here in Seattle fall quarter.

The 10-week class is geared toward adult students who would like to become freelance writers, and starts October 2. It meets once a week for three hours on Tuesday evenings. The class is part of a three-quarter series that leads to a certificate in nonfiction writing. (You can take just one class, or continue on and take all three. I teach winter quarter as well, but not spring.) Certificate programs are non-credit, and also not graded, something I like about teaching in the program.

For more information about the class, go to the Extension Web site, or send me an e-mail: jeanne.sather@gmail.com

That class is expensive, about $500 for the quarter. If you have metastatic cancer and would like to take a free writing class with me, contact Cancer Lifeline.

I'm actually teaching two workshops at Cancer Lifeline this fall.

The first is a two-hour workshop on cancer and blogging. I'll talk about all the different reasons people blog and the joys of blogging, and introduce some blogs that folks might want to be reading. During the second hour, I will be walking participants step-by-step through the process of setting up a blog. The workshop is October 6, a Saturday, from noon to 2 p.m.

Then, starting Saturday, October 13, I will be teaching a six-week writing workshop that is only for people with metastatic cancer. Some of these participants may decide to launch blogs, but we’ll be doing other kinds of writing as well.

To sign up for either workshop, contact Cancer Lifeline.

@ Jeanne Sather 2007.