In a follow-up to my posts on e-mailing doctors, The Seattle Times has quoted my blog (and your comments) in a recent story.
Read the story: Group Heath trolling cyberspace to learn what patients think
Read more on my blog: E-Mail Your Doctor?
@ Jeanne Sather 2008.
The full title is: "The Patient from Hell: How I Worked with My Doctors to Get the Best of Modern Medicine and How You Can Too."
A friend e-mailed, asking me what I thought of the book, because she didn't like it much.
I haven't read it yet, although I've heard of it, so I'm wondering:
Have you read this book, and, if so, what did you think of it?
Please add a comment below.
I'll be reading it myself, once I get through the stack of books on my coffee table, which include: "Face Food," "The Seattle Bungalow," "Vegetable Soups," and "A Lifetime of Secrets."
Buy the book:
First, the backstory. I wrote in a post on April 17, after seeing my oncologist, Dr. Lee:
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.
A few days after that, I received this e-mail from the practice manager:
Hi Jeanne--
Dr. Lee met with me today and gave me the copies you hand carried to him at your appointment last Thursday. I also went online and checked out your blog and the comments that others have posted about the desire to communicate with their physicians via e-mail, rather than phone calls.
You are very well informed and seem to have many of the details as to why we cannot share PHI with you via unsecure networks at this time. I appreciate your comments and your request. I am also the Privacy & Compliance Liaison for our practice and we continue to explore options on how to achieve the required level of security to preserve patient confidentiality. We are in the process of redesigning our website right now. Please stay in touch with me, and I will keep your comments ( & those of others) in mind as we proceed down this path.
When you are in the office for your next appointment, please ask the front desk if i am here -- I would like to meet you and say hello!
Take care-
Denise
Denise Parkinson, CMPE
Practice Director
Puget Sound Cancer Centers
Pretty cool response, I thought. I like it when people take me seriously. Here is my reply:
Denise--thank you very much for getting back to me.
I do understand about patient privacy issues, and that it would require changes in your computer systems that might be rather expensive. And I appreciate your listening to the voices of cancer patients, many of them people like me with metastatic disease, who would find it so much easier to e-mail their doctors rather than call.
As you saw in the article about Group Health, the doctors seem to find it more efficient too, once it is in place.
I will definitely ask for you next time I'm in. I am really happy with the care that I'm getting at PSCC from Dr. Lee and the rest of the team. I was especially pleased to have a woman from the billing office come and find me and discuss my bill and a payment plan with me face-to-face. That was much appreciated.
Jeanne
Praise where praise is due.
Here are the posts and newspaper story I gave to Dr. Lee:
The doctor will e-mail you now
@ Jeanne Sather 2008.
This is a chapter from the book I'm working on, called 'The Assertive Cancer Patient: A Troublemaker’s Guide to Getting the Best Cancer Treatment Possible.' I hope to have the book done by the end of 2008, but who knows? This blog takes up most of my time. Jeanne
I call them “MIA doctors”—doctors who go missing in action when their patients are dying.
Cancer patients do not expect the doctor who has cared for them throughout their illness to turn and walk away once they are terminally ill. But that is what happens more often than not. The doctor hands them off to hospice for palliative care or sends them home to die, and that’s it: These dying patients never see or hear from their doctors again. Often, during their last appointment oncologists don’t even say goodbye or acknowledge that they will not be seeing the patient again.
Before I get into the reasons for this, how things are starting to change, and what you can do, a couple of stories:
When my friend Surain af Sandeberg was dying of cancer in the spring of 2002, her husband Robert told me how distressed he was that they had not heard from Surain’s doctor since her last appointment.
Surain had metastatic breast cancer. Late in 2001 her doctor discovered that the cancer had spread to her brain, and she had radiation therapy to the head. Then cancer was found in her upper spine, and in January 2002 Surain’s doctor told her that it was unlikely further treatment would work.
Surain went home to the houseboat on Seattle’s Lake Union where she had lived with Robert since 1994, and a group of friends helped Robert care for her during the remaining months of her life. But during this time, and even at the time of Surain’s death in March, her doctor never once contacted her or her husband. She never called; she never sent a note.
“It’s is definitely true that [the doctor] disappeared completely after she told us that Surain had one to two months left to live,” says Rain Robert af Sandeberg (who has since added his wife’s nickname to his name). “Surain and I were surprised by that—I might say a bit upset.
“Surain liked her doctor very much. She was a famous doctor, yet she seemed to give preference to Surain’s case and gave her quick appointments when it was possible in her busy schedule.”
I was one of the people who helped care for Surain at the end of her life, and I was shocked when Robert told me Surain’s doctor had gone MIA. At that time I had no idea that this was standard practice for most oncologists. Once they feel they can do nothing more for the patient medically, they hand them off to hospice, to a social worker or pastor, or just send them home to die.
Since then, I have heard a number of similar stories, and each time I hear one, my outrage grows. These dying patients are not asking for a lot: a phone call, a chance to say goodbye and thank you, some acknowledgement of the relationship they have had with their doctor.
The family doctor goes MIA
A woman I know told me a similar story, but in this case it was the family doctor who went MIA when her mother-in-law was diagnosed with metastatic cancer at age 82.
“This was the most difficult thing for us as a family—feeling that her family doctor of 25 years farmed her off to an oncologist, and then as soon as he handed her off we never heard from him again,” she says.
Several years after her mother-in-law’s death, these memories are still painful. She had accompanied her mother-in-law to a number of doctor’s appointments over the years, and saw what she thought was a warm, caring relationship. But once her mother-in-law was diagnosed with cancer, she says, “It was as if the relationship they had was phony; it didn’t exist.”
And when her mother-in-law died, she says, “We had expectations—it would have been just common courtesy—for the doctor to make a phone call when she died or send a little note. But nothing. A gaping vacuum. It was hard for us.”
Her husband adds, ”There was no good-bye, no card, no appearance at her bedside or funeral.”
These stories are difficult to read, I realize, but read on, because it gets better.
One thing that makes these experiences so painful for cancer patients and their families and friends is that they were unexpected. If you know that your doctor might behave this way at the end of your life, there are some things you can do to change the script. These including choosing a doctor early on who you know won’t go MIA on you at the end.
Why doctors go MIA
Doctors are taught in medical school to keep an emotional distance from their patients to protect themselves from burnout. And oncologists are taught to hand their patients off when there is nothing more that they can do for them medically—no more drugs to try, no clinical trials left that might prolong their lives for a little while—and turn their attention to patients they can help.
What they don’t seem to realize is that we patients experience our relationships with our doctors as so much more than a “medical” relationship.
In addition, many oncologists experience the death of a patient as a personal failure, when, as one woman points out, “It’s not all about them.” Also, several doctors have told me that giving bad news, telling a patient that he or she is terminal, for example, is one of the of the most stressful things they do. And to top that off, the vast majority of oncologists were never taught how to talk with their patients—so they avoid having these difficult end-of-life conversations, and the patients are left confused and sad and feeling abandoned.
“We are expecting that physicians have a level of emotional maturity and a level of comfort with all aspects of life, including death, and most of us are not OK with it,” says Karen Gorrin, a therapist who works with cancer patients.
“It’s not what our culture has taught us,” Gorrin says. “We don’t grow up with this and we aren’t taught this in schools.” She adds that in her training as a therapist she was also taught to distance herself from her clients, but she has broken ranks and doesn’t do things that way any more.
“In my training one of our mentors was really clear: ‘You don’t go to funerals; the way you do this is you do your work as a professional and you keep a distance,’” she says. “But I found that this didn’t work for me. I had a relationship and I needed closure and I needed to see through the relationship. That works for me.”
Change is coming
Dr. Anthony Back, a medical oncologist at the Seattle Cancer Care Alliance in Seattle, Washington, is doing research on doctor-patient communication and training doctors to have what he calls “difficult conversations” with their patients. He says, contrary to the conventional wisdom, doctors benefit from being able to have these conversations with patients and are less likely to burn out.
Dr. Back is one of a handful of voices in the wilderness at this point, but his work offers hope that the next generation of oncologists will be able to talk openly with their cancer patients throughout their diagnosis and treatment and at the end of life. (A side note here: Some oncologists have figured this out, despite what they were or were not taught in medical school, and do a wonderful job of having difficult conversations with their patients. My own doctor is one of them.) Dr. Back’s work may well mean that the next generation of oncologists will be able to say goodbye to dying patients and not go MIA on them.
Dr. Back and several co-authors published an article, “On Saying Goodbye,” in the April 2005 issue of the Annals of Internal Medicine that has attracted a lot of attention. Dr. Back says the article was needed because, “There was kind of a gap in the medical literature about how to close a relationship with someone who is dying. … There is something about modern medicine—our huge job is to keep people alive as long as possible. It’s not as much about honoring and respecting the life. There hasn’t been a lot of talk about that.”
Dr. Back helps train young doctors, including medical students, residents, and fellows, and he says they don’t see their mentors having these conversations with patients who are at the end of their lives. “There is not a lot of role modeling about it,” he says. “They are learning by trial and error.”
In the journal article, Dr. Back and his co-authors walk doctors through seven steps in the process of saying goodbye to a dying patient. These include choosing an appropriate time and place, giving the patient a chance to respond, and my favorite, “Number Six: Articulate an ongoing commitment to the patient’s care, to make it clear she is not being abandoned.”
It is clear that this is needed. After the article came out, Dr. Back says he received one phone call and four e-mails from people saying that their veterinarian did a better job when a pet died. He says, “I got phone calls and e-mails from people who said something like, ‘When my dad died I didn’t hear anything from the doctor. But when my cat died I got a handwritten note the next week and a call.’ One woman said the vet made a donation to PAWS [the Progressive Animal Welfare Society] in honor of her pet rabbit. The contrast is a little creepy.”
What you can do
1. Know what you want
The first thing you can do, to help keep your doctor from going MIA, is to think about what you want from your doctor at the end of your life. I am not terminally ill, but I have an advanced cancer that cannot be cured, so I’ve spent some time thinking about these issues.
I want my doctor (by which I mean my medical oncologist) to tell me, clearly, when all of my treatment options have been exhausted and I am dying. At that time, I want the opportunity to thank him for all that he has done for me, and I want the opportunity to say goodbye.
And I want my doctor to stay in touch with me during the time I have left. This doesn’t need to be a personal visit, a phone call or two is fine.
My doctor will also be invited to my funeral. Whether he attends or not is of course up to him, but he will be invited.
2. Choose a good time for you
If possible, you will want to carefully choose the time to have this conversation. For example, I did all my end-of-life planning, including rewriting my will and making plans for my funeral during a period when I was in remission and feeling physically and emotionally strong. Don’t kid yourself that this will be an easy conversation, for either you or your doctor. Choose a good time.
3. Give your doctor some warning
Once you’ve prepared yourself to have this conversation with your doctor, give your doctor a verbal warning that you are going to bring up a tough subject. “It’s a little tough for some doctors to hear this out of the blue,” says Dr. Back. “You might say something like, ‘I’ve been doing some thinking and planning and there are a couple of things I want to request.’”
4. Be specific about what you want
You may want to go into this meeting prepared with a written list of the things you want to talk about to make sure you don’t forget anything. Then just tell your doctor what your concerns are, whether it is making sure you have a chance to say goodbye, or wanting reassurance that you will still have contact with your doctor at the end of life. Dr. Back says he encourages cancer patients to raise these issues. “I think most doctors would appreciate this kind of invitation,” he says. “It could be uncomfortable, but just hang in there.”
5. Enlist help to get what you want
You, or a family member, can enlist the help of your doctor’s nurse, suggests Dr. Back. “Family members could call the doctor’s office at the end of life,” he says. “It is totally fine to say to the nurse: ‘It would mean a lot to us to have a call from the doctor. We just want to talk a little bit.’ Most doctors would respond to that. It is a respectful request about something you need.”
6. Be prepared for the possibility of an MIA doctor
You’ve told your doctor what you want, but that doesn’t guarantee that the doctor will be responsive. You need to be prepared for that possibility. Some doctors, for all the reasons mentioned above or for personal reasons of their own, may not be able to maintain contact with you at the end of your life. That’s sad.
If this does happen to you, don’t put too much energy into trying to change the doctor. Acknowledge to yourself that it’s not what you want, and find someone else who will be comfortable being present for you in the last weeks and months of your life. This could be a pastor, a therapist, or a close friend.
See also:
Discovering the power of goodbye
@ Jeanne Sather 2008.
I felt like a 2-year-old yesterday morning.
I hadn't slept well, and I woke up with a stiff neck and in a really terrible mood. And it was raining--cold, damp Seattle rain. (Those of you who live elsewhere are probably scratching your heads and saying, "Well, of course rain is damp. How else would it be? But you don't know Seattle rain. Ours is damper. Trust me.)
I considered calling the cancer center and cancelling my appt. with Dr. Lee and also my treatment (zometa, by IV). Did not want to go there. Did not want to talk about cancer. Did not want a blood draw. Did not want to get answers to the questions that have been hanging over my head ...
OK, you get the picture.
And I know what was wrong: I hadn't been there in EIGHT WEEKS. Eight weeks without a doctor's appt. All I had during that time was one little MUGA scan, to make sure my heart isn't being damaged by the Tykerb. (Isn't cancer fun? My heart is fine, by the way.) Anyway, eight weeks without a doctor's appt. is something of a personal record for me, at least during the past six years.
During that time away from the cancer center, I'd made a fabulous trip with Younger Son, and--even though I was blogging almost every day--I was able to put my cancer in a box marked, "worry about this later."
Well, the time to worry was yesterday, and I wasn't ready.
So, after pouting, throwing things, and basically doing the whole 2-year-old thing, I SHAMED myself into going. That was how I got out the door.
I took a cab, because the marvelous red Corvair is STILL in the shop, four weeks and counting, don't even ask. It will come home when it comes home. And of course the cab driver was adorable. (We talked. His wife has MS. I didn't tell him I have cancer.) My cab drivers almost always are adorable, except for the guy who brought Younger Son and me home from the airport on Saturday, well, early Sunday morning by that time. He was a pill.
Anyway, cut to the facts.
Had my blood draw. One stick only.
Then, and this was truly amazing and I am going to write a second post about it, a woman from the billing office came to find me in the waiting room, to discuss the balance on my account with me personally and to set up a payment plan. I was gobsmacked.
She was warm, charming, and accepted my suggestion for how much a month I could afford to pay.
You have to understand that I am used to the University of Washington Medical Center, the Seattle Cancer Care Alliance, and Swedish cancer center, where often the first bill you see is a threat to send you to collections. And if there's an error in the bill that you are trying to work out--and have called and written to them about the matter--the threats keep coming even while you are discussing, negotiating, and getting copies of paperwork sent from your insurance company or doctor's office. I have been sent to collections at least twice for bills that were mistakes.
(I am not making this up. I AM trying to shame these cancer centers into doing a better job. I once rewrote a threatening letter from SCCA that I had received and sent it to Norm Hubband, the top guy--COO, I think his title is--as a suggestion for a kinder, gentler letter they might send to patients who owe money. Don't think they used it.)
So this was pretty unbelievable--someone from the finance office who treats patients like real people. She didn't use the word "deadbeat" once!
OK, after all of this, I finally saw Dr. Lee, who was in top form. We went down my list of questions, which were these:
Q: Could I increase the dose on the antibiotic I'm taking for the Tykerb-induced acne?
A: Yes.
Q: Where's my tumor marker (CEA)?
A: 1.2 last time we drew it, which is normal, normal, normal.
Q: Is it time for a PET or other scan?
A: Yes. Dr. Lee recommended the PET/CT, which is the one I was hoping for. Because on the PET, tumors will light up. If my tumor marker is accurate--the whole point of doing the scan--then nothing should light up except my arthritis. If that is true, then I am in remission, which was something we had given up on years ago. This doesn't mean I'll be able to go off treatment, but it would mean there are no signs of active disease.
Of course, I've been saying I'm in remission since January, but doctors are more cautious souls.
Q: How's my thyroid?
A: Not quite normal. We can do more tests to see if I need thyroid meds. I asked to put this off for awhile because I'm having a bunch of tests in the next couple of weeks.
Q: I think I've overdue for a mammogram on my left breast.
A: Yes. We'll schedule that.
Q; I need to see my dentist. How do I explain what zometa can do to the bone in the jaw?
A: Tell him to check for osteonecrosis (bone death) of the jaw. (Let's just leave that one at that. I have no signs, but because of being on zometa for so long, I can't have a tooth pulled, for example. The bone will not fill in.)
And then, drum roll, the question that has actually been bothering me--way back in the dark back corners of my mind--was this one:
Q: How long do you expect the Tykerb to work?
A: We don't know. (What he actually said was, "I hope it will work for years." Then we got into the details.)
Now, that's a tough answer. I've been on it for almost five months. In a clinical trial, it only worked an average of six or seven months for the women in the trial.
I asked if Dr. Lee had any patients who have been on Tykerb longer than me, and he said no. So we are on the cutting edge, ladies and gents. I've e-mailed Dr. Livingston to ask him about this, but haven't heard back.
A favor: if you are on Tykerb, and have been on it longer than six months and it is still working for you, please e-mail me, or add a comment below, and let me know.
Now of course Dr. Lee had his own list of things to talk to me about, but his list was pretty much the same as mine, except for the mammogram and the last question.
Then, I went to get my one measly 30-minute IV, zometa, and I was done. My nurse, Susan, was done with her shift, but she hung around to be the one to stick me because sometimes it takes a couple of tries to get a vein on me and Susan got me first stick last time.
Also one stick. I was golden by this point.
While I was in the chair getting my zometa, I had a long talk with a woman who is also Stage IV breast cancer and used to be a nurse. She was in to get a shot, which she got, and we talked for most of the time my IV was running. She was bald in a very odd pattern, and we talked about that. Going bald, getting drugs. What to do with the hair.
Then, as I left the cancer center, I tried to call a cab to take me home, and was told it would be an hour wait. Another woman, also a cancer patient, was walking right next to me and overheard this, and asked me where I wanted to go.
Even though she was going north, she drove to me to my bank, waited while I made a deposit and flirted briefly with Roberto, the sweet Latin teller, and then drove me home, which was south. I'm used to people being nice to me, but this was pretty amazing.
She had a tumor removed from her cheek and is now having radiation, so I think she has Teri's kind of cancer. I gave her my card and the name of Teri's blog, The Cheeky Librarian (didn't have the URL memorized).
All in all, a pretty amazing day.
When I got home, I took Connie for a socializing walk, over to the drugstore. This is through a busy area, so he has to meet lots of people on the street and NOT jump up on them. It's a challenge.
Then I crawled into bed with a book, and Older Son came by and made dinner for us (yakisoba, a Japanese noodle dish) and I ate that in bed.
My next challenge, once I get caught up at home, is to lose 25 lbs. The thyroid may have something to do with my weight gain. But also, I don't get enough exercise to lose weight, because I get tired. Going to consult with Monica, the world's most fabulous personal trainer, who also has years of experience working with women with cancer.
Oh, my new cancer center is formally known as the Puget Sound Cancer Centers, and it is at Northwest Hospital in Seattle. The folks in the billing office are awesome, if the woman I met is any indication.
@ Jeanne Sather 2008.
Amorette has a great rant on her blog about gatekeepers.
Well, it's actually about ONE gatekeeper, who kept her from making an appointment with the doctor of her choice. The gatekeeper said the doctor was not taking any new Medicare patients.
This gets me going on so many levels. For one, I'm supposed to be going on Medicare at any minute. (I believe I'm eligible as of mid-January, but I'm waiting for the letter to arrive in the mail.) Once I'm a Medicare patient, am I going to find myself shunned by doctors and their staffs in favor of people with better-paying health insurance?
Dr. Lee has already told me that I need to be sure to have supplemental insurance in addition to Medicare if I want to continue to get care at his cancer center. He said something kind of convoluted like, "We wouldn't be able to do much for you if you don't have supplemental insurance."
I didn't allow that to upset me, since I plan to have supplemental insurance in any case. There's no other way I could survive financially.
Back to the gatekeeper issue.
This has been a hot button for me for a long time. The most frustrating thing is when you want to talk to your doctor and have to go through so many gatekeepers to get there.
By the time you get an answer, the answer may not be the answer to the question that you asked. Kind of like that kids' game of telephone.
That's why I prefer to e-mail my doctors.
And sometimes, the gatekeeper never talks to the doctor about you at all, but tells you that she has. (She? Gatekeepers in oncology are usually nurses, and more than 90 percent are female.)
Having a gatekeeper keep you away from your doctor when you have a serious question or concern about your care is just about the most frustrating thing that can happen when you have cancer.
And if the gatekeeper is condescending at the same time, or makes light of your question, watch out!
There are a couple of ways you can go with this. Sometimes, the only answer is to change doctors. But that's a huge energy suck, and it takes time to get to know and trust a new doctor, so really the best thing is to build good relationships with everyone who is involved in your care. I go out of my way to do this--it helps that I like people, generally--and I make a lot of use of the classic "How can WE fix this?" type of question.
Read:
Amorette: Turned away at the doctor's (thanks, Medicare!)
@ Jeanne Sather 2008.
That's a question, and one I'd really like to know the answer to.
I get a lot of e-mail from people who are unhappy with their doctors, but what I DON'T hear is a willingness to change doctors. The subtext to most of these complaints is that the writers feel powerless to change things with their doctors, but also feel dependent ... and hestitate to make a doctor or the staff angry by being too demanding. (And what is "too demanding" anyway? That's another good topic.)
Changing doctors when you have cancer is also complicated by the fact that you have cancer (duh) and you probably don't have a lot of energy for interviewing new doctors at this point.
And then there are all the emotions that surround cancer--fear, for one.
These emotions make us cling to what we know, because change on top of all the cancer emotions could just be too much.
This post was triggered by an article in a back issue of Real Simple magazine (September 2006) called "Should You Dump Your Doctor?"
The scenarios listed were things like a doctor who is always very late for appointments, like two hours late, and a doctor who makes personal remarks. What struck me was how trivial some of these scenarios seemed--but that's often what happens when I cross back over the border from Cancer Land into the world where healthy people live.
And this article was written for the healthy majority. Or the "temporarily able bodied," as a friend of mine living with MS used to call them.
So, the question is this: If you are a cancer patient, what kinds of problems or issues would be serious enough for you to change doctors?
Post your answer as a comment below, or send me an e-mail: jeanne.sather@gmail.com
Read more:
There's Obnoxious, and There's Assertive
@ Jeanne Sather 2008.
CNN has an article Are you an obnoxious patient? that at first glance would get my dander up--doctors firing patients for being assertive.
But on closer reading, I agree with most of what the author has to say.
HOWEVER, one thing I would add: What seems assertive to one person may be obnoxious to another.
So choose a doctor who you are comfortable discussing your care with, who has time for you, and who doesn't dismiss your concerns. Even if you do bring in a stack of printouts off the Web ...
Full disclosure: Have I ever been "fired" by a doctor? The answer is yes, but I would have fired her if she hadn't fired me first.
Choosing the right doctor isn't about blame--although that doctor made a number of mistakes in my care, including writing the wrong orders for my chemo--It's about choosing the right doctor for you.
We aren't being treated for hangnails here--cancer is serious business.
@ Jeanne Sather 2008.
When I was in Tucson for my checkup with Dr. Livingston, I asked him what he thought about providing better after care for cancer survivors and long-term cancer patients like me (I don't qualify as a survivor, because I'm in continuous treatment. Semantics, anyway).
I was thinking along the lines of a new specialty within the oncology field, training some oncologists just to diagnose and treat after effects. But Dr. Livingston has another, and I think better, idea.
He says that individual oncologists should only treat one type of cancer. That will allow them to gain greater expertise in that type of cancer, and then, Dr. L says, oncologists should continue to see their patients after treatment for any problems the patient may be having.
"We need more medical oncologists who specialize in one disease," he said. "Then an oncologist is more likely to recognize late complications of the disease." He should know: Dr. Livingston has been caring for people with breast cancer for at least 25 years, and I have yet to ask him a question he couldn't answer.
Sending us back to our primary care doctors, even with a check-list of possible problems to look for, doesn't solve the problem.
This is a campaign I can get behind: Greater specialization within oncology.
@ Jeanne Sather 2008.
So, I'm in Tucson, as many of you know, for one of my twice-yearly checkups with Dr. Livingston, who was my medical oncologist from the time I was first diagnosed back in 1998 until he moved to Arizona more than a year ago.
This is the third time I've come down to see Dr. Livingston, and every time I've felt it was so worth it. Just to see him, and to have him review everything that is going on with me and my treatment, and to tell me what he thinks.
There is a level of trust here that I do not have with any of my other doctors. (In the case of Dr. Lee, my new medical oncologist in Seattle, I think we'll get there, but it's still not the same, much as I like him.)
The News
Last time I saw Dr. L, last May, I was at the point of refusing any more treatment. Let's be honest: I was contemplating suicide. That's how strung out and upset I was--It was a combination of my being totally worn out from treatment, problems Younger Son was having, and frightening problems at the cancer center in Seattle (Swedish) where I was being treated at the time.
He, bless him, proposed a treatment break. That lasted six months, and since then I've had lots of treatment in a short time: two rounds of radiation, three weeks at a time, and I've started a new chemo regimen, which includes Tykerb.
As I've said in earlier posts, my tumor marker dropped like a rock in the last couple of months, putting me in the "no active disease" category, possibly in the "clinical remission" category (although Dr. L and I didn't discuss labels), and I DIDN'T BELIEVE IT.
So, basically, I came to Tucson to have Dr. L tell me to believe these test results. And now I do.
He did say something that I hadn't heard before, which is that the Tykerb, my new oral chemo drug, sensitized the cancer cells so that the radiation worked better than it would have if I had not been on Tykerb at the time. That was cool. Take that, cancer cells.
My mental mantra for cancer cells goes something like this: "Biff. Bang. Bop. Take that! Nuke them back to the future!" I used to do the new-age-y visualization stuff, talking gently to my body and my cells, but now my visualizations are at the level of a violent comic book. Where's my super hero?
I also, being me, had a long list of questions written out, and we went over these carefully, everything from whether or not I should go back on Avastin (no), to possible harm to my thyroid from the last round of radiation, to how often I should get zometa (the ONE DRUG that I am now getting by IV. For most of my history since metastasis hit six years ago, I've gotten three or four drugs every time I went in for treatment).
Zometa damages the kidneys, and I don't want my kidneys to fail--wouldn't that be an irony: To be killed by the cancer treatment rather than the disease. Of course, that happens. We all know it.
And then there's the dip in my chest where my right breast used to be. It's gotten deeper recently, and I didn't worry about it so much as wonder whether or not I SHOULD be worrying about it. I asked one of my doctors in Seattle, and he just kind of dismissed my question without answering it.
Dr. L says that it is atrophy of the tissues because I had radiation to the chest back in 1999, when I had a local recurrence.
Great. Question answered. No more need to wonder. Or worry.
We had a bit of mutual congratulation over the fact that my tumor marker (CEA) has never been this low. Never. Not in six years of treatment for metastatic disease. And I reminded him that he had been taking care of me for more than nine years now, which is also quite a milestone. Typically, women with metastatic breast cancer only live two to three years from the time of the metastases.
There are a growing number of us, though, who are living a lot longer than that, especially women whose mets are only in the bone.
We also talked about my low energy and agreed that once I had the results of the tests of my thyroid function I could go from there with Dr. Lee. But also I need to accept that I'm going to feel like crap for a few more weeks, or possibly a month, because of the radiation.
That is so hard for me. Unbelievably hard. I do not do "feeling like crap" well.
As I write this, I'm still in bed in the hotel in Tucson, haven't gone any further than the bathroom. Monica is here and she brought me coffee and water. It's noon, and I'm contemplating staying in bed all afternoon, because we want to go out tonight to an art thing, a First Friday gallery show at the art museum here.
What I'd really like to do is go for a short hike in the desert, but I don't have the energy. We're going to try that tomorrow morning.
The Horizon Opens Up, Again
So I'll go back to Seattle with a couple of things to check out with my oncologist at home, Dr. Lee, and with incredible peace of mind. The feeling that I have is that the horizon is opening out again.
I asked Dr. L this question: "Given the low tumor marker, and how well I am responding to the Tykerb, I feel like I probably have a year of feeling good ahead of me." And then I stopped and waited for him to answer my question posed as a statement, and he said, "YES."
So. Yes. That means, given the way I live my life, that I will focus on the things I want to do in the next year, because I have some assurance that I will be able to do them: A couple of short trips. The Cancer Bloggers Reunion. The trip to Japan in October.
Then, at home, it's almost time to start thinking about my vegetable garden for the coming summer. Time to start some seeds and know that I will be here to plant them outside, and to eat the fruits and vegetables as they ripen.
Tired as I am, I love my life, and I'm willing to fight for it, for at least a while longer.
Love you all.
A note: If you want to read more about Tykerb, go to the search box in the right column and enter "Tykerb." I've written at least a half dozen posts about this new targeted therapy.
@ Jeanne Sather 2008.
