Those of you who know me well, or knew me well, or probably have even just met me a handful of times know that I like to HAVE A PLAN. I don't like floating aimlessly through the universe waiting for something to happen...so right now is a little frustrating for me.
I know the very basic PLAN: finish fertility treatments, start chemo, do chemo for 16 weeks, wait about a month, have surgery, start estrogen inhibiting treatment for at least 5 years....but that's it.
I don't know the specifics, though, and it's starting to bother me, although there is little that anyone can do about that--it's not anyone's fault--it's just the nature of the beast.
So here is a (partial) list of the things I wish I knew:
1. When my fertility treatments are going to wrap up and the "harvest" be completed.
- Currently, I am giving myself two shots a day of different drugs: Menopur in the mornings, Follistim in the evenings. The shots go into my stomach fat like the other shots did (sparing my brave co-workers!). I'm going in later this morning to have another blood draw done which presumably will help inform the fertility schedule.
2. Will I have a port-a-cath installed, or can I look forward to a needle being jammed in my arm every two weeks (at least) to get the chemo?
3. Do I have the genetic mutation that makes me more prone to certain types of cancers? (I should know this sometime next week...if the "3 week" estimate given on 4/14 was accurate)
4. Will I qualify for the ISPY2 Clinical Study? (2-3 weeks until I know that)
5. WHEN am I starting CHEMO?
- And I guess, wrapped up in all the anxiety about the WHEN of CHEMO is the what's going to happen during chemo. I don't want to lose my hair but I know I will (so I'm getting it cut next week in a preemptive maneuver so as to not pull out long pieces of hair....). I don't want to be tired and cranky (Greg would probably insert here: "You mean, MORE tired and cranky than USUAL?" Yes, Greg....that's what I mean). I don't want to not want to play with Owen, or lose my patience when he acts like a normal two-year-old....I don't want to be a burden to co-workers who will have to pick up my slack for the next six months or so....I want to know what days I will feel my worst and what days I'll feel my best so we can PLAN fun days and outings so hopefully at least one of my good days will be a Saturday or Sunday....and on and on and on it goes.
6. Will I be able to have another baby?
- We are doing all the things to keep that option open but the reality is that the estrogen inhibiting treatments that are a critical part of the protocols for women who survive breast cancer are not something you can do while pregnant. I've been talking to Dr. Chui about this and I think we have a general plan that would mean trying in 2-3 years but I'll be honest, I was hoping to have a baby this year so I'm annoyed that my original PLAN is not going to happen.
...are you sensing a theme here? I need to relax and let go a bit, I know, but it's hard for me to do that. I don't think the hormones I'm injecting myself with daily are particularly helpful in this regard, either.
I know I need to keep the BIG PICTURE in mind: I will survive (and those of you who knew me when...well, who knew that ol' karaoke standby would be my midlife anthem? I thought I just needed to get through a bad break-up but now...!)...and I do....but I still can't keep from (occasionally) sweating the small stuff.
Tuesday, April 26, 2011
Friday, April 22, 2011
A busy 48 Hours!
Yesterday, Thursday the 21st was my big day of activities: it started with an MRI at 7:30, then a biopsy, then a CT scan, then a bone scan. My first interaction of the day was getting an IV Catheter placed in my right arm. Heidi's Helpful Cancer Hint of the Day: when receiving an IV Cath, do not get it in your dominant arm!!! AND Hint # 2: if you have to wear it for several procedures, try to get them to place it in a vein NOT located where your arm bends! I failed to heed either piece of this advice which meant I couldn't change my clothes. As a result, I was walking around OHSU from one appointment to the other in long hospital gowns carrying a Kate Spade bag and a 3-ring binder in the crook of my left arm. I'm surprised the Director of Public Safety was not called about the homeless woman wandering the halls.
The MRI to determine my qualifications for the study took a long time to do, but aside from my arms falling asleep (because I had to hold them above my head) it was painless. The biopsy this time was a needle biopsy--and I have to say the doctor performing it was not nearly as liberal with the lidocaine as the doctor at Epic had been. It HURT. I would yelp and then she'd give me another shot of lido to numb what she had just done which was in stark contrast to feeling nothing during the vacuum-assisted biopsy I had had before.
I did have the nurses take a picture of one super-cool, long piece of my tumor for the blog, but Greg says it is WAY too GROSS to put on here. Truly it's not that fascinating....and I didn't have anything to "scale" it so you can't really get a sense of how big it is, either. I did text it to a few other friends, one who said she expected something black and ugly and twisty looking...it certainly doesn't live up to what you would expect. It just looks like a shiny piece of tissue. You'd never know it wanted to kill me!
BUT enough of that drama because the CT and Bone Scan results are in and that tumor is NOT GOING TO KILL ME!!!! Yay! The cancer has not spread anywhere else in my body.
In addition to the CT and Bone Scan results being awesome, the procedures were pretty easy too. The CT scan took basically no time at all, although the contrasting agent is interesting. It's a very hot rush through your body. The only thing I didn't expect with the bone scan was that the contrasting agent is injected and then requires two hours to move through your body before the scan so I had to find something to do to kill some time. I was happy to learn my friend Anne was nearby for a visit, though VERY sorry it was because her son had had a health problem. (The good news is they're already safe and sound back home and celebrating one-year since his successful bone marrow transplant!!) It was great to see Anne, and cry a little bit with her about a few things, and laugh with her a little bit about everything else. I could get used to talking with Anne in person, although I hope it's not under the same circumstances again! (Stay strong, S!) Once the Bone Scan was over (it took a while too, but you just lay there and almost fall asleep) Greg gave me a ride home.
Today was the "Second Opinion" with Dr. Wheeler of Legacy Health Systems and I REALLY REALLY liked her. She assures me this is, in part, because she was giving me a second opinion, and it's always easiest to hear the same stuff a second time. Maybe that's true, but she was just a really sweet person to boot.
Dr. Wheeler is a surgeon as well, and says that as a surgeon she certainly prefers surgery first and chemo second but only because that makes her life easier. She said she would actually do chemo first then surgery if she were me, and she took the time to explain her reasoning. She had a few ideas about the timing of my sentinel node biopsy that she suggested I discuss with Naik and Chui at OHSU but she is definitely very enthusiastic about the care I could receive from them if I were to stay. It would also be an option to treat with her and Chui at OHSU, but she politely suggested I wouldn't probably want to be running around town for follow-up appointments when I could do them all in one place. Finally, she said I should probably talk to plastic surgeons too to see who I liked there because assuming I have reconstructive surgery, plastics will be a part of my after-care as well.
The bottom line: the second opinion is that I am in good hands if I stick with OHSU. My opinion is the same, given both the doctors themselves as well as the nearby location to Greg's work. I'm glad I met Dr. Wheeler, though. She is a good person to know going forward and after chemo I would still have the option of making the change if I wanted to.
So that's it, party people: I can now say that clinically I have Stage II Breast Cancer. I will survive it, but it's going to be a bit of a haul getting there.
The MRI to determine my qualifications for the study took a long time to do, but aside from my arms falling asleep (because I had to hold them above my head) it was painless. The biopsy this time was a needle biopsy--and I have to say the doctor performing it was not nearly as liberal with the lidocaine as the doctor at Epic had been. It HURT. I would yelp and then she'd give me another shot of lido to numb what she had just done which was in stark contrast to feeling nothing during the vacuum-assisted biopsy I had had before.
I did have the nurses take a picture of one super-cool, long piece of my tumor for the blog, but Greg says it is WAY too GROSS to put on here. Truly it's not that fascinating....and I didn't have anything to "scale" it so you can't really get a sense of how big it is, either. I did text it to a few other friends, one who said she expected something black and ugly and twisty looking...it certainly doesn't live up to what you would expect. It just looks like a shiny piece of tissue. You'd never know it wanted to kill me!
BUT enough of that drama because the CT and Bone Scan results are in and that tumor is NOT GOING TO KILL ME!!!! Yay! The cancer has not spread anywhere else in my body.
In addition to the CT and Bone Scan results being awesome, the procedures were pretty easy too. The CT scan took basically no time at all, although the contrasting agent is interesting. It's a very hot rush through your body. The only thing I didn't expect with the bone scan was that the contrasting agent is injected and then requires two hours to move through your body before the scan so I had to find something to do to kill some time. I was happy to learn my friend Anne was nearby for a visit, though VERY sorry it was because her son had had a health problem. (The good news is they're already safe and sound back home and celebrating one-year since his successful bone marrow transplant!!) It was great to see Anne, and cry a little bit with her about a few things, and laugh with her a little bit about everything else. I could get used to talking with Anne in person, although I hope it's not under the same circumstances again! (Stay strong, S!) Once the Bone Scan was over (it took a while too, but you just lay there and almost fall asleep) Greg gave me a ride home.
Today was the "Second Opinion" with Dr. Wheeler of Legacy Health Systems and I REALLY REALLY liked her. She assures me this is, in part, because she was giving me a second opinion, and it's always easiest to hear the same stuff a second time. Maybe that's true, but she was just a really sweet person to boot.
Dr. Wheeler is a surgeon as well, and says that as a surgeon she certainly prefers surgery first and chemo second but only because that makes her life easier. She said she would actually do chemo first then surgery if she were me, and she took the time to explain her reasoning. She had a few ideas about the timing of my sentinel node biopsy that she suggested I discuss with Naik and Chui at OHSU but she is definitely very enthusiastic about the care I could receive from them if I were to stay. It would also be an option to treat with her and Chui at OHSU, but she politely suggested I wouldn't probably want to be running around town for follow-up appointments when I could do them all in one place. Finally, she said I should probably talk to plastic surgeons too to see who I liked there because assuming I have reconstructive surgery, plastics will be a part of my after-care as well.
The bottom line: the second opinion is that I am in good hands if I stick with OHSU. My opinion is the same, given both the doctors themselves as well as the nearby location to Greg's work. I'm glad I met Dr. Wheeler, though. She is a good person to know going forward and after chemo I would still have the option of making the change if I wanted to.
So that's it, party people: I can now say that clinically I have Stage II Breast Cancer. I will survive it, but it's going to be a bit of a haul getting there.
Tuesday, April 19, 2011
The Second Opinion....
Lots and lots of you have checked in with me about this whole second opinion discussion. I confess: yesterday while I was thinking about it, and deliberating over it, I was getting really upset about it. Finally, I decided to just make the call and do it and now--no more stress (over that, at least). I will be meeting with Dr. Amanda Wheeler of Legacy Health Systems on Friday morning to discuss what she thinks. She was recommended to me by my OB/GYN Dr. Flath. When I called to make the appointment, the receptionist pulled a bit of a Mom card on me:
ME: Hi, I'd like to make an appointment with Dr. Wheeler....I was diagnosed a few weeks ago and Dr. Flath recommended I speak with her.
RECEPTIONIST: And you waited to call until NOW BECAUSE..?!?!?!
So the "gig is up" that I'm going there to get a second opinion since my husband works at OHSU...so we'll see what I think. In the end, I guess I feel like it doesn't hurt a thing to go meet with someone else, and Greg has already said he'd support whichever decision I make for care though we both continue to recognize the convenience of OHSU will continue to be a major factor.
Today I go back to the Fertility Doc's to check my progress from the injections. I'd like to say I'm done giving myself shots but I think the fun has just begun. The new shots, though, have to be in my behind whereas the ones I've been doing so far were in the fat of my stomach. (I've already secured the services of 2 willing co-workers if I need to do the shots during business hours and lack the required physical coordination.) Just another slice of paradise!
Thursday is a big day of appointments for me with the MRI and biopsy to determine clinical trial eligibility, plus the CT and bone scans for "staging" purposes. I know the eligibility will take a few weeks to determine and then we must decide if we want to participate. I do NOT know how long the staging analysis will take. This unknown question of whether or not the cancer has spread elsewhere (though unlikely) is still my greatest source of anxiety. I will be happy to know the answer, and while I have a strong preference for one outcome, as I have found through all of this KNOWING is better than NOT, even if it's not the news you want to hear.
Barring any major unforeseen developments, I'll probably take tomorrow off from an update and then regale you all with tales of various machines and bruises on Thursday. By the way: the question has come up--is there a way to have this blogger service send a follower an email when I've made a new post? I don't know the answer but I think it's "no." However, if you've discovered the secret, could you post the "how-to" in the comments section below?
Thanks again everyone for your support--I know there are some unreturned phone calls and I apologize for that but right now I have to be honest and say that email and this blog are just the best ways for me to communicate. Talking about it makes me much more emotional and while I know it's okay to be emotional, I try to keep it SOMEWHAT under control!
ME: Hi, I'd like to make an appointment with Dr. Wheeler....I was diagnosed a few weeks ago and Dr. Flath recommended I speak with her.
RECEPTIONIST: And you waited to call until NOW BECAUSE..?!?!?!
So the "gig is up" that I'm going there to get a second opinion since my husband works at OHSU...so we'll see what I think. In the end, I guess I feel like it doesn't hurt a thing to go meet with someone else, and Greg has already said he'd support whichever decision I make for care though we both continue to recognize the convenience of OHSU will continue to be a major factor.
Today I go back to the Fertility Doc's to check my progress from the injections. I'd like to say I'm done giving myself shots but I think the fun has just begun. The new shots, though, have to be in my behind whereas the ones I've been doing so far were in the fat of my stomach. (I've already secured the services of 2 willing co-workers if I need to do the shots during business hours and lack the required physical coordination.) Just another slice of paradise!
Thursday is a big day of appointments for me with the MRI and biopsy to determine clinical trial eligibility, plus the CT and bone scans for "staging" purposes. I know the eligibility will take a few weeks to determine and then we must decide if we want to participate. I do NOT know how long the staging analysis will take. This unknown question of whether or not the cancer has spread elsewhere (though unlikely) is still my greatest source of anxiety. I will be happy to know the answer, and while I have a strong preference for one outcome, as I have found through all of this KNOWING is better than NOT, even if it's not the news you want to hear.
Barring any major unforeseen developments, I'll probably take tomorrow off from an update and then regale you all with tales of various machines and bruises on Thursday. By the way: the question has come up--is there a way to have this blogger service send a follower an email when I've made a new post? I don't know the answer but I think it's "no." However, if you've discovered the secret, could you post the "how-to" in the comments section below?
Thanks again everyone for your support--I know there are some unreturned phone calls and I apologize for that but right now I have to be honest and say that email and this blog are just the best ways for me to communicate. Talking about it makes me much more emotional and while I know it's okay to be emotional, I try to keep it SOMEWHAT under control!
Monday, April 18, 2011
"Though the Mountains Divide, and the Oceans are Wide..."
Yes, indeed: It's a SMALL WORLD after all!
After my appointment Thursday with Dr. Chui it started to dawn on me that I felt like we had nearly crossed paths with him before, and my suspicions were confirmed: he and his wife are friends with the people who run Thunder Ranch, the shooting school that Greg & I have gone to and they had talked about wanting to introduce us to the Chuis last time we were there. In fact, Dr. Chui has helped out one of their family members in her own battle with BC so I've even had the pleasure of hearing from her via e-mail about her experiences.
Then we learned (on this very blog!) another friend--who grew up across the street from Greg's Dad down in the Bay Area--also knows Dr. Chui through his wife.
All this makes me feel like we're in great hands moving forward...yet there is still the lingering voice in the back of my head wondering if we shouldn't go talk to at least one other set of doctors. On the one hand, if I'm treating at OHSU where Greg works, he will have to spend less time away from his brand new job because he can pop in on me during the work day and remain on campus should issues arise. Add to that these personal connections to my oncologist, and it seems pretty tough to beat. On the other hand, isn't it just good sense to see what else is out there? Shouldn't we know for sure that--for example--the recommendation for "chemo first" is truly my best option? Even the medical professionals at OHSU seem to think it's a good idea.
I confess my hesitancy is at least partially motivated by laziness: I simply do not want to hear the same speech(es) about my choice(s) again! I just want people to say: "Here's what I'd do if I were you / married to you..." and be done with it. I realize at the end of the day I'm the one who has to decide my course of treatment based on the information given to me, but I'd like the speeches to be a bit more focused I guess.
In other news, Friday afternoon at 3:30 I got an email from the fertility clinic asking me to come in and pick up some shots. I had to cancel some plans to catch up with an old friend (boo!!!) to accomplish this, but I guess I should get used to the idea of being available to medical professionals at the drop of a hat for the time being. Since that day I've been giving myself Ganirelix shots which (if I understand these things correctly) is tricking my body into PMS (so I'm extra emotional, yay!) to start my body off down the path of the egg harvest.
Saturday night was Greg's SURPRISE going away party since he left the DA's office and I'm proud to tell you that we pulled it off and he was totally shocked (and slightly dismayed, since he had not wanted a "fuss"). Sunday his Mom came to town for an already planned visit, but what great timing. She will be in town working with a client this week and has been able to adjust her schedule to stay with in town through next weekend to spend more time with us.
This week I believe I have more appointments at the fertility doctor to look forward to, and probably the clinical trial screening, scans....and second opinions....Will post more when I know more!
After my appointment Thursday with Dr. Chui it started to dawn on me that I felt like we had nearly crossed paths with him before, and my suspicions were confirmed: he and his wife are friends with the people who run Thunder Ranch, the shooting school that Greg & I have gone to and they had talked about wanting to introduce us to the Chuis last time we were there. In fact, Dr. Chui has helped out one of their family members in her own battle with BC so I've even had the pleasure of hearing from her via e-mail about her experiences.
Then we learned (on this very blog!) another friend--who grew up across the street from Greg's Dad down in the Bay Area--also knows Dr. Chui through his wife.
All this makes me feel like we're in great hands moving forward...yet there is still the lingering voice in the back of my head wondering if we shouldn't go talk to at least one other set of doctors. On the one hand, if I'm treating at OHSU where Greg works, he will have to spend less time away from his brand new job because he can pop in on me during the work day and remain on campus should issues arise. Add to that these personal connections to my oncologist, and it seems pretty tough to beat. On the other hand, isn't it just good sense to see what else is out there? Shouldn't we know for sure that--for example--the recommendation for "chemo first" is truly my best option? Even the medical professionals at OHSU seem to think it's a good idea.
I confess my hesitancy is at least partially motivated by laziness: I simply do not want to hear the same speech(es) about my choice(s) again! I just want people to say: "Here's what I'd do if I were you / married to you..." and be done with it. I realize at the end of the day I'm the one who has to decide my course of treatment based on the information given to me, but I'd like the speeches to be a bit more focused I guess.
In other news, Friday afternoon at 3:30 I got an email from the fertility clinic asking me to come in and pick up some shots. I had to cancel some plans to catch up with an old friend (boo!!!) to accomplish this, but I guess I should get used to the idea of being available to medical professionals at the drop of a hat for the time being. Since that day I've been giving myself Ganirelix shots which (if I understand these things correctly) is tricking my body into PMS (so I'm extra emotional, yay!) to start my body off down the path of the egg harvest.
Saturday night was Greg's SURPRISE going away party since he left the DA's office and I'm proud to tell you that we pulled it off and he was totally shocked (and slightly dismayed, since he had not wanted a "fuss"). Sunday his Mom came to town for an already planned visit, but what great timing. She will be in town working with a client this week and has been able to adjust her schedule to stay with in town through next weekend to spend more time with us.
This week I believe I have more appointments at the fertility doctor to look forward to, and probably the clinical trial screening, scans....and second opinions....Will post more when I know more!
Thursday, April 14, 2011
A Long and Information-Filled Day
All right, so today was a super long day and I'll try to summarize it for you as coherently as possible:
OHSU's Cancer Center advertises that the "Cancer Team" meets and discusses your case and comes up with a course of treatment. I didn't find this to be exactly the case. Instead, I found I met with some people and they each told me what they were going to do, and when they could do it...and it didn't feel like there was quite the coordinated approach I expected from reading the website.
That having been said, we started out meeting Dr. Arpana Naik, the breast surgeon. The appointment started 45 minutes after the scheduled time. She reviewed with me (again) the basic choices of lumpectomy & radiation or mastectomy and she talked about scheduling a surgery within the next handful of weeks. I thought that was interesting given that I had been told Tuesday night by the nurse she thought I'd do chemo first....
Next genetics squeezed us in and we discussed the lab test for BRCA-1 and BRCA-2, the genetic mutations that could mean I'm more prone to get cancer than the average person. I did the test (interestingly, I was given the choice: blood draw or rinse my mouth with Scope and spit it into a test tube...WHO, I ask, would choose the blood draw? They're both equally accurate....) and will hear in the next two to three weeks if I have any of the common genetic markers. If I do, that would likely mean a more radical surgery (read: double mastectomy and eventually removal of my last remaining ovary) in order to greatly reduce the chances I'll get cancer later in life. (I'm all in for that, if I have the mutation).
Next was the long, long wait for my oncologist, Dr. Steven Chui...the appointment was set for 12:00 and I think he arrived around 12:55. Greg had to leave at 12:30 so I did this one on my own, and I had another appointment across town at 1:45 so I was super-stressed and mildly annoyed. ESPECIALLY because I felt like the oncology appointment was, in a lot of ways, the most important one of all. Add to that my frustration that he says he'd like to do the chemo BEFORE the surgery, which is fine, but I began to have little faith in the "coordinated team approach" that I'd believed I was in for.
Dr. Chui had some additional information--first, I may qualify for a study called "I-Spy." To determine my eligibility I have to have another biopsy (boo), another MRI, and then wait until the genetic characteristics of my tumor are analyzed (about two weeks). If I qualify, it means additional scans and MRIs throughout the treatment (good), I'll have the same standard of chemo care as anyone else walking through the door in my condition (good), and I'll be given a course of drugs specifically designed to address the particular genetic characteristics of my cancer (good, right?). The drugs are not FDA-approved, but I'm hardly the first person they'll be used on so I believe it's worth doing...but if anyone reading this knows more than me about such things I'd love to hear about it!
Dr. Chui recommends the chemo pre-surgery regardless of the eligibility for the study. He equates cancer to a dandelion patch and my body to a lawn. He says it's possible the dandelion seeds have spread but not taken root yet, just like cancer cells can be there, and he believes it's better to know what weed-killer will work early. Or something like that. It was a much more elegant analogy when he did it.
He also said he wants to do a CT and bone scan of my entire body to make sure I don't have cancer anywhere else. He said he'd bet "a lot of money" that I don't, but that he believes I deserve to know. I also believe it, even though it means some more anxiety waiting for the answer to the unknown question. (If the cancer has spread, of course, the prognosis changes dramatically...and not in a good way...)
I don't know when all of that is going to happen, as I had to run out the door and he is going to be out of town next week, but I'm under the impression that while he's away next week (at an I-Spy conference, so I encouraged him to learn lots) I'll hear from his nurse and start working on the things he wants done.
Finally, I hustled across town to see Dr. Hesla at Oregon Reproductive Medicine to discuss preservation of my eggs in the event Greg and I want to have children. It appears I'm a pretty good candidate, and LiveStrong and other pharmaceutical companies actually financially support a good portion of the costs that are normally associated with these procedures. I have some paperwork to fill out, and it's still spendy, but I think it's a good thing to do so we can have the option of another child after all this is done. I had quite a bit of blood drawn at this appointment (with no chance to eat all day) so if any part of this post doesn't make sense I blame it on that.
I guess I still have a fair number of questions at this point, as the path still seems a bit uncertain.
I continue to be touched and humbled by the number of notes, calls and other gestures people are making to reach out to me. Thanks to you all for your kind words!
OHSU's Cancer Center advertises that the "Cancer Team" meets and discusses your case and comes up with a course of treatment. I didn't find this to be exactly the case. Instead, I found I met with some people and they each told me what they were going to do, and when they could do it...and it didn't feel like there was quite the coordinated approach I expected from reading the website.
That having been said, we started out meeting Dr. Arpana Naik, the breast surgeon. The appointment started 45 minutes after the scheduled time. She reviewed with me (again) the basic choices of lumpectomy & radiation or mastectomy and she talked about scheduling a surgery within the next handful of weeks. I thought that was interesting given that I had been told Tuesday night by the nurse she thought I'd do chemo first....
Next genetics squeezed us in and we discussed the lab test for BRCA-1 and BRCA-2, the genetic mutations that could mean I'm more prone to get cancer than the average person. I did the test (interestingly, I was given the choice: blood draw or rinse my mouth with Scope and spit it into a test tube...WHO, I ask, would choose the blood draw? They're both equally accurate....) and will hear in the next two to three weeks if I have any of the common genetic markers. If I do, that would likely mean a more radical surgery (read: double mastectomy and eventually removal of my last remaining ovary) in order to greatly reduce the chances I'll get cancer later in life. (I'm all in for that, if I have the mutation).
Next was the long, long wait for my oncologist, Dr. Steven Chui...the appointment was set for 12:00 and I think he arrived around 12:55. Greg had to leave at 12:30 so I did this one on my own, and I had another appointment across town at 1:45 so I was super-stressed and mildly annoyed. ESPECIALLY because I felt like the oncology appointment was, in a lot of ways, the most important one of all. Add to that my frustration that he says he'd like to do the chemo BEFORE the surgery, which is fine, but I began to have little faith in the "coordinated team approach" that I'd believed I was in for.
Dr. Chui had some additional information--first, I may qualify for a study called "I-Spy." To determine my eligibility I have to have another biopsy (boo), another MRI, and then wait until the genetic characteristics of my tumor are analyzed (about two weeks). If I qualify, it means additional scans and MRIs throughout the treatment (good), I'll have the same standard of chemo care as anyone else walking through the door in my condition (good), and I'll be given a course of drugs specifically designed to address the particular genetic characteristics of my cancer (good, right?). The drugs are not FDA-approved, but I'm hardly the first person they'll be used on so I believe it's worth doing...but if anyone reading this knows more than me about such things I'd love to hear about it!
Dr. Chui recommends the chemo pre-surgery regardless of the eligibility for the study. He equates cancer to a dandelion patch and my body to a lawn. He says it's possible the dandelion seeds have spread but not taken root yet, just like cancer cells can be there, and he believes it's better to know what weed-killer will work early. Or something like that. It was a much more elegant analogy when he did it.
He also said he wants to do a CT and bone scan of my entire body to make sure I don't have cancer anywhere else. He said he'd bet "a lot of money" that I don't, but that he believes I deserve to know. I also believe it, even though it means some more anxiety waiting for the answer to the unknown question. (If the cancer has spread, of course, the prognosis changes dramatically...and not in a good way...)
I don't know when all of that is going to happen, as I had to run out the door and he is going to be out of town next week, but I'm under the impression that while he's away next week (at an I-Spy conference, so I encouraged him to learn lots) I'll hear from his nurse and start working on the things he wants done.
Finally, I hustled across town to see Dr. Hesla at Oregon Reproductive Medicine to discuss preservation of my eggs in the event Greg and I want to have children. It appears I'm a pretty good candidate, and LiveStrong and other pharmaceutical companies actually financially support a good portion of the costs that are normally associated with these procedures. I have some paperwork to fill out, and it's still spendy, but I think it's a good thing to do so we can have the option of another child after all this is done. I had quite a bit of blood drawn at this appointment (with no chance to eat all day) so if any part of this post doesn't make sense I blame it on that.
I guess I still have a fair number of questions at this point, as the path still seems a bit uncertain.
I continue to be touched and humbled by the number of notes, calls and other gestures people are making to reach out to me. Thanks to you all for your kind words!
Tuesday, April 12, 2011
More Questions than Answers
So I was a little bit wrong about what was happening today. I did not meet my "Cancer Team" at OHSU, but rather the "Nurse Navigator" at the Women's Health Center. She meets with every single woman who comes through the center with breast cancer and explains what to expect.
Today we reviewed the radiology reports and she explained what it all means. Bottom line: I have a big tumor but the cells are lazy (shocker!) so it's not rapidly growing at this point.
We talked about the many possibilities for treatment:
* I can expect either a lumpectomy (removal of the tumor) followed by 5-6 weeks of daily radiation or a mastectomy (removal of the whole breast) which would not necessarily require radiation after the surgery
* I may or may not have to undergo chemotherapy, and if I DO have chemo, we don't yet know whether I'll have that before or after the surgery
* If I have chemo before the surgery, I could start as soon as next week (but probably won't, more on that in a minute)
* If I have surgery, I could have it in one or two weeks, depending on the type of surgery and if I want reconstructive surgery as well
We also discussed the probability that, given my age, the doctors will want me to have genetic work done to determine if I carry the most common genes for cancer. If I do, then we may explore even more radical options like a double mastectomy. The genetic evaluation would take at least three weeks, which would obviously change the schedules above and may inform some of the treatment options like whether or not I'll have chemo.
My big questions were what stage is my cancer and when am I going to know if the breast cancer is localized or has spread? The answer: it depends. Regardless of the type of surgery I have, some lymph nodes will be removed to ensure that the MRI and ultrasounds were correct and that the cancer is not in my nodes. A whole body scan sounds unlikely unless there is other evidence that the cancer is elsewhere. The stage of cancer depends in part on how the cancer has spread, so it's going to be a while before we know for sure what's up with that.
When do I get to meet my CANCER TEAM? It sounds like, on Thursday, I will meet at least some of them--the surgeon, Dr. Arpana Naik, probably the genetics department, and also the medical oncologist. Thursday afternoon I am also meeting with a fertility doctor to explore harvesting my eggs so that we can have another child once this is all over (hence the delay in chemo...)
Our friend, Kate, is a survivor of breast cancer and she gave me some pretty good advice during my tearful phone call to her this week: don't think of news as good or bad as you go through this process, just think of it as NEWS. It's all just information to take in and consider as you walk down the path...and so we walk!!!
Today we reviewed the radiology reports and she explained what it all means. Bottom line: I have a big tumor but the cells are lazy (shocker!) so it's not rapidly growing at this point.
We talked about the many possibilities for treatment:
* I can expect either a lumpectomy (removal of the tumor) followed by 5-6 weeks of daily radiation or a mastectomy (removal of the whole breast) which would not necessarily require radiation after the surgery
* I may or may not have to undergo chemotherapy, and if I DO have chemo, we don't yet know whether I'll have that before or after the surgery
* If I have chemo before the surgery, I could start as soon as next week (but probably won't, more on that in a minute)
* If I have surgery, I could have it in one or two weeks, depending on the type of surgery and if I want reconstructive surgery as well
We also discussed the probability that, given my age, the doctors will want me to have genetic work done to determine if I carry the most common genes for cancer. If I do, then we may explore even more radical options like a double mastectomy. The genetic evaluation would take at least three weeks, which would obviously change the schedules above and may inform some of the treatment options like whether or not I'll have chemo.
My big questions were what stage is my cancer and when am I going to know if the breast cancer is localized or has spread? The answer: it depends. Regardless of the type of surgery I have, some lymph nodes will be removed to ensure that the MRI and ultrasounds were correct and that the cancer is not in my nodes. A whole body scan sounds unlikely unless there is other evidence that the cancer is elsewhere. The stage of cancer depends in part on how the cancer has spread, so it's going to be a while before we know for sure what's up with that.
When do I get to meet my CANCER TEAM? It sounds like, on Thursday, I will meet at least some of them--the surgeon, Dr. Arpana Naik, probably the genetics department, and also the medical oncologist. Thursday afternoon I am also meeting with a fertility doctor to explore harvesting my eggs so that we can have another child once this is all over (hence the delay in chemo...)
Our friend, Kate, is a survivor of breast cancer and she gave me some pretty good advice during my tearful phone call to her this week: don't think of news as good or bad as you go through this process, just think of it as NEWS. It's all just information to take in and consider as you walk down the path...and so we walk!!!
Other Random Stuff
It occurred to me after posting my first note yesterday that I glossed over a lot of the details. Which is probably fine, but I do feel like I should share a few more things.
First off, if you ever find yourself or a loved one in a similar situation, I HIGHLY recommend Epic Imaging Centers, or a similar facility, that will do all the diagnostic procedures they can in one visit. To do the mammo-ultrasound-and biopsy all in one day was a whirlwind of activity and information, but better than having three appointments over the course of several days or weeks with the anxiety building at every step. I also really liked Dr. Meunier, the radiologist, who was a straight shooter. When you're fearing the worst the anxiety is actually more upsetting than just knowing. So I really appreciated him. On Friday, he and his team also "squeezed" me in for the MRI and he stayed late Friday night to read the scans and call me with the news that there were no abnormalities detected in my lymph nodes, which was a relief to me and a load off of my mind to start the weekend.
Also, I was not prepared to have to "take it easy" after the biopsy to the extent I was ordered to. Specifically, I was unprepared to not be able to lift over 10 pounds. If you know Owen, my toddler, you know that he is *slightly* beyond that weight limit. Greg was out of town at a conference (at Disneyland, which I'm sorry to say I ruined for him as the "Happiest Place on Earth" with my news) so I owe huge debts of gratitude to my co-worker, Susan, for dropping everything at work and meeting me at O's daycare to lift him into his carseat. And my dear cousin Lindsey, RN, came and stayed Wednesday and Thursday nights with me to help out too. As those who know Lindsey can imagine, although it had been months since O had spent any time with her, he instantly fell in love and is still asking about her this week...
And thanks to all of you for your notes of encouragement, and for understanding why this blog is easier than trying to write individual notes. It's going to be a long process!
Finally, I think most of you know that Greg started a new job as Director of Public Safety at OHSU on April 1st. What a twist of fate! I have my first appointment there today at 3:30 pm to meet my "Cancer Team" and then I'll meet my surgeon on Thursday morning. More updates tonight or tomorrow on the first meeting!!
First off, if you ever find yourself or a loved one in a similar situation, I HIGHLY recommend Epic Imaging Centers, or a similar facility, that will do all the diagnostic procedures they can in one visit. To do the mammo-ultrasound-and biopsy all in one day was a whirlwind of activity and information, but better than having three appointments over the course of several days or weeks with the anxiety building at every step. I also really liked Dr. Meunier, the radiologist, who was a straight shooter. When you're fearing the worst the anxiety is actually more upsetting than just knowing. So I really appreciated him. On Friday, he and his team also "squeezed" me in for the MRI and he stayed late Friday night to read the scans and call me with the news that there were no abnormalities detected in my lymph nodes, which was a relief to me and a load off of my mind to start the weekend.
Also, I was not prepared to have to "take it easy" after the biopsy to the extent I was ordered to. Specifically, I was unprepared to not be able to lift over 10 pounds. If you know Owen, my toddler, you know that he is *slightly* beyond that weight limit. Greg was out of town at a conference (at Disneyland, which I'm sorry to say I ruined for him as the "Happiest Place on Earth" with my news) so I owe huge debts of gratitude to my co-worker, Susan, for dropping everything at work and meeting me at O's daycare to lift him into his carseat. And my dear cousin Lindsey, RN, came and stayed Wednesday and Thursday nights with me to help out too. As those who know Lindsey can imagine, although it had been months since O had spent any time with her, he instantly fell in love and is still asking about her this week...
And thanks to all of you for your notes of encouragement, and for understanding why this blog is easier than trying to write individual notes. It's going to be a long process!
Finally, I think most of you know that Greg started a new job as Director of Public Safety at OHSU on April 1st. What a twist of fate! I have my first appointment there today at 3:30 pm to meet my "Cancer Team" and then I'll meet my surgeon on Thursday morning. More updates tonight or tomorrow on the first meeting!!
Monday, April 11, 2011
Cancer Sucks
After ignoring a lump for a few months, I finally went to my doctor on Monday, April 4. By Wednesday, April 6, 2011, I was getting a mammogram, ultrasound & biopsy. That same day the radiologist told me it was "probably" cancer. On Friday the 8th his diagnosis was confirmed.
For those of you who know about these things or want to do the internet research (I have been ordered by many to stay off the internet!) here are the specifics:
* I have an infiltrating ductal adenocarcinoma (grade 1)
* It measures 1.9 x 1.8 x 3.2 cm
* The prognostic factors are:
- Estrogen receptors: Positive, percentage of positive tumor cells 3+, strong nuclear staining intensity
- Progesterone receptors: same as above
- C-ERB B 2 Status: Negative (1+)
- Proliferative Rate (MIB-1/KI-67): Low
In the next several days and weeks I have many doctor's appointments. I am very sorry that I can't reach out to every person who cares individually, but check back here at your leisure for updates. This is going to be the most efficient way to get people information. I'm trying to keep this whole thing off of my Facebook page as much as possible because that's my fun place...not where I wish to discuss my fun bags!
In the meantime, please keep me in your thoughts (or prayers, if you do that sort of thing) and just know that as scared/sad/mad as I am about all this, I still cry less than John Boehner!
For those of you who know about these things or want to do the internet research (I have been ordered by many to stay off the internet!) here are the specifics:
* I have an infiltrating ductal adenocarcinoma (grade 1)
* It measures 1.9 x 1.8 x 3.2 cm
* The prognostic factors are:
- Estrogen receptors: Positive, percentage of positive tumor cells 3+, strong nuclear staining intensity
- Progesterone receptors: same as above
- C-ERB B 2 Status: Negative (1+)
- Proliferative Rate (MIB-1/KI-67): Low
In the next several days and weeks I have many doctor's appointments. I am very sorry that I can't reach out to every person who cares individually, but check back here at your leisure for updates. This is going to be the most efficient way to get people information. I'm trying to keep this whole thing off of my Facebook page as much as possible because that's my fun place...not where I wish to discuss my fun bags!
In the meantime, please keep me in your thoughts (or prayers, if you do that sort of thing) and just know that as scared/sad/mad as I am about all this, I still cry less than John Boehner!
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