To recap: My oncologist felt something hard in my left breast (the one currently being treated with radiation everyday for breast cancer) on January 15. I had an inconclusive ultrasound last Friday, January 25. The doctor on staff at the imaging center left a message for Dr. Kuan, recommending an MRI.
On Monday, my oncologist's nurse tried to get the authorization in for the MRI, but was told that my surgeon had to request the authorization. Why? I don't know why. But she was attentive to my needs and tried to pass it on to the surgeon's office and have them get the authorization.
Someone in that office told her that I needed to come in to the office before they could do that. I was somewhat outraged by that and called the surgeon's office, explaining that I had been in to see Dr. Broderick-Villa for a follow-up in December and I didn't see the point coming in to see them just to have them say, "okay, we'll request this authorization." Dr. Broderick called back that afternoon/evening and expressed his total agreement. He was very nice and said he'd get the request to the scheduler the next day (Tuesday).
Tuesday came and went.
At the end of yesterday (Wednesday), I called the surgeon's office and asked to speak to the scheduler. She didn't expressly state it, but it sounded like she did not get the request sent to Alta Bates Medical Group (my gatekeeper for Blue Shield) until that day (Wednesday). Furthermore, she said it typically takes ABMG 15 to 20 days (!) to approve MRIs. I expressed my surprise and she said that everything changed last summer and it just takes a really long time. And if they (the surgeon's office) mark it as urgent, to try to speed up the process, it gets stuck at the bottom of the pile and takes even longer.
Out of frustration, I called Blue Shield. I expressed my dismay and the woman agreed that, indeed, 15 to 20 days was an egregiously long time. She very nicely gave me the number to file a grievance, and suggested I talk to ABMG, to verify that they could/would/might take that long.
When I get this mad and/or frustrated, I cry. It's how I'm made and I don't like it, but there it is. So, weepy and mad, I called ABMG. The woman there was very nice (*you* try being mean to a woman with breast cancer who is crying at you on the phone--I dare you) and, while she wouldn't say it never taken that long, that was the exception and she would expect that, given my history, etc. I should have approval in three to five days. She told me that the request was not yet in the system and that I should call back the next day (today) to ensure that they had received the request.
And here we are. I called ABMG today and was told that the request was entered in to the system at 1:45 p.m. today. This is four days after the ultrasound, mind you. <sigh>. The kindly gentleman told me it could take up to five to seven business days for approval. (And then we get to try to schedule something. I wonder how long *that* will take?)
If I don't hear by Wednesday of next week, I'm calling to see where it is. And then, depending on how angry I am, I'll call Blue Shield or the surgeon's office or both. (I think the scheduler at the surgeon's office has too much to do, quite frankly. I think she could have turned this around a bit faster. Which is not to take any of the pressure off ABMG. But she really didn't need to scare me into thinking I wasn't getting an MRI for another month while obfuscating the fact that she had that request for a full day before she sent it in.) See how ticked off I am?
But honestly? For all you caring, wonderful people out there, who keep emailing me or trying to "not bother me" out of love and empathy--please know that for the most part, I'm somewhat Zen about this. It is what it is and I'll find out just what that is sooner or later (looking like later right now, isn't it?) And while I don't want to talk about this bit of the unknown, that doesn't mean I don't want to talk or that I'm fragile or anything. When we know something, be sure that I will let everyone know, right away.
In the meantime, life goes on and I have completed eight of 35 scheduled radiation treatments. Yay! I've written numbers 35 through 1 on my whiteboard at work and I'm crossing off each treatment. It's extremely gratifying. :-)
Thursday, January 31, 2008
Friday, January 25, 2008
It Could Be Nothing....
So, the ultrasound yielded more ambiguity. So they did a mammogram, which was similarly non-conclusive.
Dr. Wong tried to get hold of my oncologist, Dr. Kuan, but was unsuccessful. He wants to do an MRI to see if that tells us anything.
Basically, he says, the mass does not look like what he would typically think of as a cancerous mass. But he can't tell what it is and so says we need to do an MRI to see if anything has metastisized. If the MRI indicates it's not something good, or is--like everything else so far--inconclusive, then we'll do a biopsy.
Frank would prefer we just do the biopsy and cut to the chase. Me? I'm just tired.
So, we'll wait to hear from Dr. Kuan and then do the MRI. Meanwhile, I still can't talk about this. It's too frustrating and it makes me weep. And I'm so weary of weeping.
Dr. Wong tried to get hold of my oncologist, Dr. Kuan, but was unsuccessful. He wants to do an MRI to see if that tells us anything.
Basically, he says, the mass does not look like what he would typically think of as a cancerous mass. But he can't tell what it is and so says we need to do an MRI to see if anything has metastisized. If the MRI indicates it's not something good, or is--like everything else so far--inconclusive, then we'll do a biopsy.
Frank would prefer we just do the biopsy and cut to the chase. Me? I'm just tired.
So, we'll wait to hear from Dr. Kuan and then do the MRI. Meanwhile, I still can't talk about this. It's too frustrating and it makes me weep. And I'm so weary of weeping.
Tuesday, January 22, 2008
An Eventful Week
It's been a very busy four days (in a good way).
On Friday, I had my radiation simulation. They did CT scans a week or two ago so that Dr. Champion could plan my treatment. Then on Friday, the radiation "therapists" (I tend to think of them more as "technicians", but if they need to call themselves "therapists", who am I to argue?) took x-rays to verify that the plans made based on the CT scans were appropriate. And they were.
Not only is my heart completely out of scope for the radiation treatment, but my lungs are only about 1 to 1.5 centimeters in range. The therapist was trying to tell me--without sounding weird about it--that I have a good build for this. Of course, that is good news, but what a strange thing to have a good build for, don't you think?
They also gave me a schedule of all my radiation appointments. I had my first of 35 treatments today. I'll go everyday (4:30 p.m. today, Wednesday, and Thursday, and 8:30 a.m. each day thereafter) for about 30 minutes.
I checked myself in today, changed into the gown, and waited for the therapist to come get me. Then Joel and (Andrew?) lined me up to match the photos and tattoo matrices (I have three pin dot tattoos surrounding the area), and then they zapped me three times: first was the lymph node area, then the left side of the breast and then the right side. And I was done. One down, 34 to go. :-)
This weekend Maggie and I had a really wonderful time with some really wonderful people. Deirdre Bauer and I drove up to North Lake Tahoe on Friday afternoon with Maggie and Celia. Carla and Deirdre Greene joined us Saturday with Siobhan and Lila. It was a little late to start skiing, so we went to some hot springs just beyond Carson City, where we all sat in the very warm, pleasantly smelly water (about 105 degrees Fahrenheit). That night, after dinner, I got a bit tipsy for the first time since August.
The next day, the girls all went skiing/boarding (after a lesson for each--three on snowboard and Siobhan on skis) and the moms went for a walk near the lake and ended up in the bar at the Hyatt (who could have foreseen *that*?). After dinner, the girls went to see 27 Dresses and Carla taught us how to play Bridge (and more wine was drunk).
Coming home was a bit eventful: the battery on the Mercedes took issue with the 22 degree external temperature, and this is why we pay for AAA each year. Deirdre Greene and I enjoyed an eight hour drive home yesterday, but we were fairly Zen about it. It was easy to be Zen when Carla had all four of the 13-year old girls in her car. I'd say that Carla has some serious karma in her favor right now.
On Friday, I had my radiation simulation. They did CT scans a week or two ago so that Dr. Champion could plan my treatment. Then on Friday, the radiation "therapists" (I tend to think of them more as "technicians", but if they need to call themselves "therapists", who am I to argue?) took x-rays to verify that the plans made based on the CT scans were appropriate. And they were.
Not only is my heart completely out of scope for the radiation treatment, but my lungs are only about 1 to 1.5 centimeters in range. The therapist was trying to tell me--without sounding weird about it--that I have a good build for this. Of course, that is good news, but what a strange thing to have a good build for, don't you think?
They also gave me a schedule of all my radiation appointments. I had my first of 35 treatments today. I'll go everyday (4:30 p.m. today, Wednesday, and Thursday, and 8:30 a.m. each day thereafter) for about 30 minutes.
I checked myself in today, changed into the gown, and waited for the therapist to come get me. Then Joel and (Andrew?) lined me up to match the photos and tattoo matrices (I have three pin dot tattoos surrounding the area), and then they zapped me three times: first was the lymph node area, then the left side of the breast and then the right side. And I was done. One down, 34 to go. :-)
This weekend Maggie and I had a really wonderful time with some really wonderful people. Deirdre Bauer and I drove up to North Lake Tahoe on Friday afternoon with Maggie and Celia. Carla and Deirdre Greene joined us Saturday with Siobhan and Lila. It was a little late to start skiing, so we went to some hot springs just beyond Carson City, where we all sat in the very warm, pleasantly smelly water (about 105 degrees Fahrenheit). That night, after dinner, I got a bit tipsy for the first time since August.
The next day, the girls all went skiing/boarding (after a lesson for each--three on snowboard and Siobhan on skis) and the moms went for a walk near the lake and ended up in the bar at the Hyatt (who could have foreseen *that*?). After dinner, the girls went to see 27 Dresses and Carla taught us how to play Bridge (and more wine was drunk).
Coming home was a bit eventful: the battery on the Mercedes took issue with the 22 degree external temperature, and this is why we pay for AAA each year. Deirdre Greene and I enjoyed an eight hour drive home yesterday, but we were fairly Zen about it. It was easy to be Zen when Carla had all four of the 13-year old girls in her car. I'd say that Carla has some serious karma in her favor right now.
Tuesday, January 15, 2008
Le Sigh
Well, I went for my post chemo check-up with Dr. Kuan and she did what should have been a routine breast exam, just to make sure everything is okay. Unfortunately, there is something hard on my left breast, a bit beyond where scar tissue should be, closer to the nipple.
I told her that I experienced some pain in the area last night, and she's confused. Since the incision site itself is nice and soft, it's even more confusing. *Sigh* So. I'm having an ultrasound on the 25th (I know. Ten whole days. Can you even believe it?) to see if it's scar tissue (her best guess) or something else (which is why you do an ultrasound, right?)
More than anything else, I'm weary. I'm so very, very tired of this. And now, at what should be almost the end, we've got a "what is that" question. Well. There it is.
Meanwhile, still planning to start radiation. Got my "dress rehearsal" on Friday, and then I think I'm starting next Tuesday.
This weekend? Tahoe with Deirdre B, Deirdre G, Carla, and our daughters. I plan to drink. :-)
P.S. I genuinely appreciate the kind thoughts and words, but I'm not really up for talking about this right now. I'm frustrated and feeling a bit futile because I dont' have an action plan. I can't have an action plan--either way--until I know what's what. And I won't know that until the ultrasound. So, please, just try to bear with me until the 25th. And in the meantime, thanks for your patience.
I told her that I experienced some pain in the area last night, and she's confused. Since the incision site itself is nice and soft, it's even more confusing. *Sigh* So. I'm having an ultrasound on the 25th (I know. Ten whole days. Can you even believe it?) to see if it's scar tissue (her best guess) or something else (which is why you do an ultrasound, right?)
More than anything else, I'm weary. I'm so very, very tired of this. And now, at what should be almost the end, we've got a "what is that" question. Well. There it is.
Meanwhile, still planning to start radiation. Got my "dress rehearsal" on Friday, and then I think I'm starting next Tuesday.
This weekend? Tahoe with Deirdre B, Deirdre G, Carla, and our daughters. I plan to drink. :-)
P.S. I genuinely appreciate the kind thoughts and words, but I'm not really up for talking about this right now. I'm frustrated and feeling a bit futile because I dont' have an action plan. I can't have an action plan--either way--until I know what's what. And I won't know that until the ultrasound. So, please, just try to bear with me until the 25th. And in the meantime, thanks for your patience.
Wednesday, January 9, 2008
Scratch "Chemo" off the To-do list
My college roommate, Melinda, recommended I write "chemo" down somewhere and then put a check mark next to it. (Actually, she recommended I write "chemo 1", "chemo 2", etc.) I went in to work today, took down the Sweeney Todd newspaper ad that's been there for about a month (sorry Johnny Depp) and wrote "Chemo" in big letters. Then I drew a line threw it.
Very satisfying.
Later at my documentation team meeting, the writers gave me a fabulous box of gourmet chocolates (there are at least two serious chocolate snobs on my team and I am grateful to reap the benefits of their strong opinions). I had two of the chocolates after dinner and I feel quite sated (and loved).
Then! I went to get my final post-chemo Neulasta shot and the nurse gave me a congratulatory bouquet of flowers. This must be de rigeur there, because all the staff kept congratulating me on finishing chemo. It made me a teensy bit weepy, I confess.
So, yay. Now, on to radiation, which, truth be told, doesn't have me too concerned. I'm expecting the tedium of the routine to kick in at some point, but as someone pointed out to me several months ago, this is a marathon. And quite frankly, after four months of chemo, seven weeks of radiation doesn't seem like that big of a deal. Check back with me, though, around week four or five ;-).
Very satisfying.
Later at my documentation team meeting, the writers gave me a fabulous box of gourmet chocolates (there are at least two serious chocolate snobs on my team and I am grateful to reap the benefits of their strong opinions). I had two of the chocolates after dinner and I feel quite sated (and loved).
Then! I went to get my final post-chemo Neulasta shot and the nurse gave me a congratulatory bouquet of flowers. This must be de rigeur there, because all the staff kept congratulating me on finishing chemo. It made me a teensy bit weepy, I confess.
So, yay. Now, on to radiation, which, truth be told, doesn't have me too concerned. I'm expecting the tedium of the routine to kick in at some point, but as someone pointed out to me several months ago, this is a marathon. And quite frankly, after four months of chemo, seven weeks of radiation doesn't seem like that big of a deal. Check back with me, though, around week four or five ;-).
Tuesday, January 8, 2008
Radioactive
I had my radiation consult yesterday and I have my last chemo treatment today: this really is a week of milestones. (Yay!)
I met my radiation oncologist, Dr. Lorraine Champion, and liked her very much. ABCCC puts out a very good breast cancer treatment video and she's the narrator. (You can see her explanation of the radiation treatment here.)
They did a CT scan on me to assess how much heart and lung involvement there could potentially be in my radiation treatment. Basically, because the lungs are under the breasts, they can't totally avoid zapping them a bit, and this causes scar tissue (about 5% to 6%), which is not life-threatening. Of course, they'd prefer to avoid this with the heart, so the CT scan lets them know if they need to perform "respiratory gating". In this case, the patient has to fill the lungs, to push out the chest wall. Then, hopefully, the heart can be marginally protected. Of course, this means that you have to maintain this position during radiation and, um, can you say "kind of a drag"? Luckily, my heart is out of scope for radiation and I don't have to worry about this.
I have a simulation appointment on Friday, January 18, and then I should be starting treatment on Tuesday, January 22. Then I have 35 treatments, Monday through Friday. The entire appointment should take only about 30 minutes, so I should be able to do this either before or after work. The first 28 treatments will be for the entire left breast and for the area where they removed the ancillary lymph nodes (left armpit). The final seven treatments will be for the tumor area only. They call this "boost radiation".
And there's your Radiation 101.
I can't tell you how happy I am to be at my final chemo treatment. All in all, I have been extremely fortunate and have not suffered as much as many people I see in the waiting room at the Cancer Center. I thank my parents, Ralph and Nancy, for some extremely hardy genes.
And thanks again to all my friends, family, and co-workers who have helped with chemo, by providing company, or food, or housecleaning, or flowers, or just not telling me when I looked less than my best. I feel so inordinately lucky.
I met my radiation oncologist, Dr. Lorraine Champion, and liked her very much. ABCCC puts out a very good breast cancer treatment video and she's the narrator. (You can see her explanation of the radiation treatment here.)
They did a CT scan on me to assess how much heart and lung involvement there could potentially be in my radiation treatment. Basically, because the lungs are under the breasts, they can't totally avoid zapping them a bit, and this causes scar tissue (about 5% to 6%), which is not life-threatening. Of course, they'd prefer to avoid this with the heart, so the CT scan lets them know if they need to perform "respiratory gating". In this case, the patient has to fill the lungs, to push out the chest wall. Then, hopefully, the heart can be marginally protected. Of course, this means that you have to maintain this position during radiation and, um, can you say "kind of a drag"? Luckily, my heart is out of scope for radiation and I don't have to worry about this.
I have a simulation appointment on Friday, January 18, and then I should be starting treatment on Tuesday, January 22. Then I have 35 treatments, Monday through Friday. The entire appointment should take only about 30 minutes, so I should be able to do this either before or after work. The first 28 treatments will be for the entire left breast and for the area where they removed the ancillary lymph nodes (left armpit). The final seven treatments will be for the tumor area only. They call this "boost radiation".
And there's your Radiation 101.
I can't tell you how happy I am to be at my final chemo treatment. All in all, I have been extremely fortunate and have not suffered as much as many people I see in the waiting room at the Cancer Center. I thank my parents, Ralph and Nancy, for some extremely hardy genes.
And thanks again to all my friends, family, and co-workers who have helped with chemo, by providing company, or food, or housecleaning, or flowers, or just not telling me when I looked less than my best. I feel so inordinately lucky.
Thursday, January 3, 2008
Hemoglobin Be Damned....
....full steam ahead. :-)
My hemoglobin continues to hover in the 9's (9.4 yesterday, to be precise), so still no aranesp shot. But, all in all, that seems fine at this point.
Dr. Kuan says that a study was done that seems to link use of the shot with recurrence. She also feels that the study was one of those "let's give 900 mg of something to a rat and see what happens" experiments, rather than something that would actually indicate if something helped. (I love how rational she is.) Her point was that the insurance companies are using the questionable findings from the research to avoid giving the shot.
Furthermore, even if my hemoglobin drops below 9 (normal is 12 or above, btw) next week, it's my last infusion. So, while they might consider giving me a transfusion, it's doubtful because my system will start to recover within a few days of the infusion and we won't be throwing anymore toxins its way in the next few months, and my blood counts will start to recover all on their very own.
So, there it is. I'll be a good girl and try to get some iron into my system.
Meanwhile, the hot flashes are driving my tired soul crazy. Between anemia and menopause, I'm tired and cranky and a bit crazy. Please--if you see my family--be kind to them. They are having to exhibit major amounts of patience with me lately.
And honestly? The phrase "hot flashes" is a bit coy. I feel like I'm going to immolate several times a day. I'm so not kidding.
See? Even this entry sounds cranky. <sigh> I'm sorry.
In other news? We're starting on our "office" this week. It's Frank's and my Christmas present to each other. California Closets will be working its magic in the room just off the kitchen and everything should be done around mid-February.
Oh! and we booked hotel and flight for a week in NYC for our 25th anniversary this June. Something to look forward to, after all this nonsense is finished.
My hemoglobin continues to hover in the 9's (9.4 yesterday, to be precise), so still no aranesp shot. But, all in all, that seems fine at this point.
Dr. Kuan says that a study was done that seems to link use of the shot with recurrence. She also feels that the study was one of those "let's give 900 mg of something to a rat and see what happens" experiments, rather than something that would actually indicate if something helped. (I love how rational she is.) Her point was that the insurance companies are using the questionable findings from the research to avoid giving the shot.
Furthermore, even if my hemoglobin drops below 9 (normal is 12 or above, btw) next week, it's my last infusion. So, while they might consider giving me a transfusion, it's doubtful because my system will start to recover within a few days of the infusion and we won't be throwing anymore toxins its way in the next few months, and my blood counts will start to recover all on their very own.
So, there it is. I'll be a good girl and try to get some iron into my system.
Meanwhile, the hot flashes are driving my tired soul crazy. Between anemia and menopause, I'm tired and cranky and a bit crazy. Please--if you see my family--be kind to them. They are having to exhibit major amounts of patience with me lately.
And honestly? The phrase "hot flashes" is a bit coy. I feel like I'm going to immolate several times a day. I'm so not kidding.
See? Even this entry sounds cranky. <sigh> I'm sorry.
In other news? We're starting on our "office" this week. It's Frank's and my Christmas present to each other. California Closets will be working its magic in the room just off the kitchen and everything should be done around mid-February.
Oh! and we booked hotel and flight for a week in NYC for our 25th anniversary this June. Something to look forward to, after all this nonsense is finished.
Subscribe to:
Posts (Atom)