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Our third acceptance, folks.
Amorette, bento artist, cancer blogger, and all-around fascinating person, will be joining us in Seattle for the Reunion.
Go to her blog:
With Teri and Lisa, plus me, that makes four. Looks like we have a reunion. So far, it's all women, which is fine with me. I've invited Barry, from Australia, but it's a long way for him to come.
@ Jeanne Sather 2007.
Teri, AKA Teresa, the Cheeky Librarian (also Ninja Librarian), is the first cancer blogger to accept my invitation to the Cancer Bloggers Reunion in Seattle in July.
See her blog:
This is so exciting!
Lisa has put the reunion on her calendar and says that she'll come if she can get the time off.
See her blog:
Well, I've changed my ideas about the Cancer Bloggers Reunion that I started writing about several months ago.
At first, I thought that I would organize a two-to-three-day conference, here in Seattle in late July, that would be open to the public, but of course targeted to people living with cancer and cancer bloggers. I thought that I would invite all my favorite cancer bloggers to be speakers or presenters, and be able to pay their airfare to Seattle by doing some fund raising.
Then, as I started working on this idea, I realized that I didn't really want to put on a conference for that many people. And I didn't want to give up control of the event, as I would have to if I worked with an organization such as CancerLifeline, which would have its own agenda for such a major event, of course--one that didn't march well with mine.
The new event is much smaller, much simpler, and is what I really want to do: Get all my favorite cancer bloggers together in one place at one time for two to three days of conversation, food, and some silliness.
The event will be invitation-only, which I realize means some people who would like to come won't be able to. At this point, I'm planning to make one afternoon session open to the public and the press, so if you live in Seattle, or can get here easily, and would like to attend that, stay tuned.
I'll be sending out invitations in the next day or two, and once people have accepted, I will post their names and the URLs of their blogs.
I'm also thinking of starting a separate blog, just for the Cancer Bloggers Reunion, that all participants would be able to post to. Reaction?
Tentative dates:
July 23-25, following the BlogHer conference in San Francisco, which is July 18-20.
@ Jeanne Sather 2007.
The name "Cancer Bloggers Reunion" is also copyright, Jeanne Sather 2007, 2008.
I've been e-mailing back and forth with my new friend Liz, who is also on Tykerb (we've been comparing symptoms and getting to know each other), and two topics have come up that have been on my mind.
One is the different role I now play in my sons' lives, now that they are 17 and 23 and both in college. And also the different place they have in mine.
My sons were 8 and 13 when I was first diagnosed, just over nine years ago now, and they were my primary motivation for struggling on.
But now that they are older, my motivation is to live to do the things that I want to do. Not that my sons don't still need me, but in a different way. They need me alive and in the world, but not here to take care of them on a day-to-day basis.
This is, of course, a parenting milestone: the empty nest. But even though I miss them at times, I am really happy to be able to focus on my own priorities now, and for the time I have left.
Liz is considering taking medical retirement. I went on Social Security Disability almost two years ago now.
It was a hard decision, partly because I didn't think I'd have enough money to live on if I did, but more so because of what it means: It can feel like you are one step closer to the grave. And I didn't want to "give in."
Once I'd made this decision, though, I knew it was the right thing to do. I don't have the energy to work more than a few hours a week, but disability allows me to do that. Actually, it allows me to make up to $830/month, net. I don't usually make that much, but it's good to know that I can without affecting my benefits.
The next big milestone that I've been contemplating for several months now, and resisting, is getting someone in to help me with housework, errands, and other tasks that I don't have the energy for.
Again, being me, I've been resisting this. I like to take care of myself.
But my recent experience recovering from the radiation, and my problems before that when I had the two fractures, made me realize that I really shouldn't be home alone all day every day.
So I'm going to call my insurance company and see what, if anything, it will pay for, and then I think I will try to find a student at the University of Washington, only 20 blocks south of me, to come in for a couple hours each morning.
After all: Would I rather spend my energy scrubbing floors, or working on my book?
Put like that, the choice seems simple.
@ Jeanne Sather 2007.
One question I brought up with Dr. Lee yesterday that I forgot to write about: since my latest round of radiation therapy, my body temperature has been LOW, between 96 and 97, and I've been having chills.
When I first mentioned this to Dr. Lee on the phone a week ago, he was more worried about my running a fever as the result of getting an infection in the wake of the latest round of radiation--possibly one I wouldn't be able to shake off.
So he told me to take my temperature every day, and to call him if it went up.
I sent Younger Son to the drugstore to buy me a new thermometer, because I thought mine might be broken, it was reading so low.
But no, between 96 and 97, always (98.6 is normal). It was 96 when I saw Dr. Lee on Friday, and at first the nurse kind of shrugged it off, telling me that her own temperature was often low. But this was new for me, and it didn't feel right, so I persisted.
New information: Dr. Lee said something that I had never even considered, and that my radiation oncologist had never mentioned as a possible side effect: my thyroid may have gotten "scatter" radiation exposure during this latest series of treatments.
Oh, boy. So he had my blood drawn for a thyroid test. Call in five days for results.
I do not yet know what this means. I don't know if the thyroid can repair itself, if it is indeed damaged, or if this is yet another thing that I will have to live with.
To be fair to my radiation oncologist, Dr. Eulau, I don't expect my doctors to mention every possible side effect before they treat me. I do understand that these treatments come with side effects and after effects, sometimes very serious ones.
I will e-mail Dr. Eulau about this, though, although I believe he is on vacation.
This brings up another topic that I will be blogging about in the new year:
A new oncology specialty. We need specialists in the care of cancer patients and former cancer patients who are knowledgeable about the side effects and after effects of cancer treatment.
I'm hearing this more and more from the people who read my blog, because many of us have been in cancer treatment for a long time, and we have odd side effects that no one seems to know much about, or, sadly, to take seriously, in some cases. And that rankles, of course.
If you know of a doctor or cancer center that is doing work in this area, please write and let me know. Thanks.
@ Jeanne Sather 2007.
I said that to Dr. Lee as I was leaving the cancer center yesterday, and he gave me kind of a blank look. Then he got it, and told me I looked great (the word "considering" was hanging there unspoken).
In any case, I have decided that this is my motto for 2008: "Celebrating Nine Years of Cancer Treatment"
And my second motto: "Onward and upward in 2008!"
Because you can cry and moan and bitch about cancer, and how unfair life is (and sometimes I do that, too), or you can make lemonade.
This is not the life I expected to have. (I expected to live to be 96 or older, with few health problems, as my grandmother did.)
This is not the life I wanted. (Much more travel, more adventures, more romance, and more writing achievements were on my agenda.)
This isn't even the life I "deserve," whatever that means.
I don't think karma dealt me the cancer card because of something I did or didn't do. Random. That's my feeling about why I got cancer, that and environmental toxins, although I was exposed to very few of those, as far as I know.
But this is sure the life I got. So, until I'm ready to call it quits, this is the life I'm living.
And I'm done living it with "grace," whatever that means. I plan to live my life in 2008 with a kick-butt attitude. That means tackling more of the big issues on my blog, and also in my life.
I plan to get my book, "The Assertive Patient Handbook," written and out there. I've had trouble finding a publisher, which has kept me from finishing the book, although it is probably half done. But I think I will go with a "print on demand" publisher, and sell it through my blog.
Just came up with the subhead for the title: "A Trouble-Maker’s Guide to Getting the Best Cancer Treatment Possible."
So the full title (and this is copyrighted, folks) is: The Assertive Cancer Patient Handbook: A Trouble-Maker’s Guide to Getting the Best Cancer Treatment Possible
Not that I consider myself a trouble-maker, but I know people at the two cancer centers where I've gotten treatment in the past who think so.
Of course, what I think of them is unprintable. (Or maybe not. But enough about that for now.)
My biggest problem--one I have to constantly keep in mind--is my lack of energy. I am always outrunning my physical strength, because I get excited about something.
And then I crash.
I do recognize that this is a major part of my personality, and some would call it a strength, but it is a problem, too. I think my enthusiasm is part of my charm. But. A huge but.
That's all for now. The dog needs a walk, and I have promises to keep.
@ Jeanne Sather 2007.
So, I'm just barely back in the land of the living after my latest round of radiation, which ended nine days ago.
Yesterday, I pulled myself together and went off to see Dr. Lee, just to discuss where things were at since he had been out of town last time I was in for treatment. Also because I wanted to see him before my appointment with Dr. Livingston in Tucson next week.
Things were really popping at the cancer center. Not because they had so many patients in for treatment. It was the Friday before New Year's, after all. But because only two of the four doctors were working. (Four!!! That still amazes me. Until recently I've gotten treatment at cancer centers that had dozens of oncologists.)
The emergencies were coming in over the phone. Dr. Lee was multitasking in a way that I could only sit back and admire, which I did, since the door to my patient room was open to the drama taking place in the hallway.
The nurse popped in to reassure me that Dr. Lee would get to me as soon as he could, but I was able to be gracious about it. I truly felt gracious, since I wasn't the one having a cancer emergency at the holidays. There's nothing worse than having your own doctor be unavailable at a time like that.
But once Dr. Lee joined me, he was all mine, which is also a skill I admire. I kind of expected that he'd be distracted and unable to give me his full attention, and I had even considered offering to go home and come back on Monday, but no need to worry.
CEA 1.6
So, the tumor marker. For those of you who follow tumor markers, your own or a loved one's, and who understand the significance of this: My CEA, which has been as high as 60, had dropped to 6.6 in November, and then to 1.6 a couple of weeks ago.
I was inclined not to believe the first low number, because a CEA of under 5 is considered to mean that you have no signs of active disease.
I haven't been there since my early days on Herceptin, almost six years ago now. And I had pretty much resolved that I was going to have to carry on with active disease, as I have been for the last several years.
(That means doing treatment to keep the cancer from progressing, and from hurting me, with a broken bone, for example, but not trying to get me into remission. I've been on continuous treatment for almost exactly six years now, with this as the goal: Keep me alive, keep me functioning, but don't try to knock out the cancer. We already tried, and failed, at that task twice before: My first diagnosis and then my first recurrence, back in the last century, in 1998 and 1999.)
But Dr. Lee thinks I should believe this low tumor marker, and he told me his reasons.
One, we have treated pretty much all of my large tumors with radiation, in September and then again this past month. And two, he thinks the Tykerb, my new miracle drug, is working to whack whatever cancer is left. (Not a medical term, "whack," but I like it.)
So I am trying to work myself into a celebratory mood. I'm sure I'll be able to once I stop feeling like a poisoning victim from the radiation.
What I do feel, and I've felt this before when I've gotten good news about my cancer, is a sense that the horizon is opening up again.
It is almost a visual image, rather than a logical one: I can see the world opening up in front of me again. Whereas, when I am really sick, my world shrinks to my bedroom. That, of course, is why I love blogging so much: I can be part of the world, or a world, even when my "real world" is very, very small.
OK. Celebration.
What Next?
The other big issue to discuss with Dr. Lee, and then with Dr. L in Tucson next week, is my treatment going forward.
Obviously, I'm going to continue with the Tykerb, and try to get the dose as high as possible without causing constant diarrhea. Taking antibiotics, which have started to get the acne under control, thank god.
I'll also continue with zometa, which keeps my bones strong. (All of my disease is in the bones, which is fortunate.) Zometa causes some pretty awful side effects in a very small number of people--more about that sometime soon--but it works for me and I think the risk is acceptable.
The big question was the Avastin. I've been on Avastin for at least two years, up until last spring when I started my treatment break, always in combination with other drugs, usually Herceptin, zometa, and a conventional chemo (Taxol, Navelbine, and cytoxan, at various times).
Avastin seemed to work for me, and the only side effect was high blood pressure, which was easily controlled with a low dose of a blood pressure med. But I never had Avastin alone--and I don't believe it is ever given on its own--so impossible to know for sure how effective the Avastin actually was.
Still Avastin is out of favor right now, with a clinical trial in the news that found that Avastin in an adjuvant setting (treatment for women who had had their first breast cancer diagnosis, used after surgery) was no better than conventional chemo alone.
We kicked around all the arguments--and without rehashing them here--decided, subject to Dr. L's agreement, that I would stay off the Avastin for now.
If the Tykerb and zometa (plus all the radiation) combo is working as well as it is, we decided to "save" Avastin for some time in the future when the Tykerb is working less well. Because that day will come.
This is one of the reasons I really like Dr. Lee, though. Even though he had all sorts of emergencies and other patients awaiting his attention outside the door, he could sit there and give me his attention and really hash out these issues with me. And not tell me what to do, but discuss it.
As he said, there are no right and wrong answers in my treatment. (I would add: Only educated guesses.)
That's why he is the right doctor for me.
So as I was leaving, I said something about "Celebrating nine years of cancer treatment" in the flip way that I sometimes use, and Dr. Lee just looked at me. I think he forgets how long it has been. And of course he has been my doctor for less than a year, so he hasn't been with me through the worst of it, as Dr. L has.
@ Jeanne Sather 2007.
I am one of those people who don't function in the morning without coffee. Even now, with my stomach wrecked by treatment, I have to have a cup of coffee--never mind that I only sip half of it before going on to milder beverages.
This morning's power outage, from 8:10 a.m. to 9, lasted just long enough for me to realize how singularly unprepared for winter I am.
No power means: No coffee. No heat. No cooking of any kind. Candles only for light. I only have a small amount of firewood, so if this had gone on for even a day, I would have been huddled in bed with the two big dogs--who are not normally allowed on the bed--for heat.
Argh! I had meant to write a series of posts about disaster preparedness for cancer patients. Another good idea that fell by the wayside. I have way more good ideas than I have time or energy to write them.
However, if I had written that one, I might (emphasize MIGHT) have gotten myself prepared for a loss of power or other disaster.
I'm sitting here on the couch in my ancient flannel robe, HappyLight on, dishwasher running, and a pile of clean laundry waiting to be folded.
The dogs are keeping me company. GB, the Golden, is trying to find traces of Christmas goodies on the carpet, and Constant, my dog, is tethered to the piano, which is part of his training--he's with me, but he's under control.
It is 11:30, and I've only been up for about an hour, but I do feel like I'm slowly coming out of my cave and returning to the real world. It's been days since I've driven my car, and I've scarcely left the house, except for a walk in the snow on Christmas and a trip downtown yesterday (I didn't drive) to have lunch with friends.
But as I flex all the body parts that you flex after a crash like mine, I feel like I'm ready to re-enter the real world.
That means, of course, laundry, dishes, dogs to walk, and then students papers to read (these should have been finished two or three weeks ago, eek!).
Not going to do too much today: Walk Connie, who needs my attention. He's a bit out of control after being walked by Younger Son instead of me for a week. Also an appointment with Dr. Lee, so I need to get all my questions written down.
The biggest question is whether or not we can believe my two most recent CEAs (tumor markers). The one drawn just before Thanksgiving was 6.6, and the one after that was one-point-something, which seems impossible to me, given that I had three tumors large enough to radiate and was in fact in the middle of the series of radiation treatments when it was drawn.
So I am afraid to hope, I guess. Probably the "solution" will be to have a PET scan, and see what that shows.
Also, I'm going to Tucson to see Dr. Livingston, my oncologist from the time I was first diagnosed until he moved to Tucson a year ago, and I need to get copies of records and scans for him. I'll fly to Tucson on January 2, see Dr. L on the 3rd, and fly home on the 5th, which leaves some time to enjoy the warm weather and the desert, although I'm supposed to avoid sun exposure with my new antibiotic! (Always something!)
Guess I'll tackle a few of those papers, and then walk Connie.
I know the good people at Google are not actually READING my mail (although the government may be, oh paranoia!), but whenever I open an e-mail in my g-mail account, the one I use for this blog, there are ads in the right column, supposedly targeted to the content of the e-mail message.
It's disconcerting, to say the least. It feels like they are reading my mail.
But because the ads are not targeted by real, thinking people, but by robots, which are only as good as the folks who write the code, things like this appear to the side of an e-mail message from Amy, in which she mentions her husband's stem cell transplant:
Bosley Eyebrow Transplant
Eyebrow Transplantation Is A Simple Outpatient Procedure. Learn More.
www.Bosley.com
OK, I'm fascinated, but so far I haven't clicked through to see what an eyebrow transplant actually is. I don't think it has anything to do with cancer. Everything seems funny today.
@ Jeanne Sather 2007.
