Where I'm at-- What I need--How you can help.

So here's part II from yesterday's post, in which I said I'd explain further about the kind of treatment that I'll be entering into post-wedding. But the truth is, I'm just not up to describing the meeting in great detail. What I will say is that we definitely know I will need an aggressive form of chemo since the left breast tumor is a single largish (3.2 cm) mass that is grade 3 (more quick growing/aggressive type of cancer replication), and I'm Stage 2A. The chemo they will give me is so aggressive that I will need to go through a heart test, a MUGA test, to determine whether my heart functioning is strong enough to tolerate a certain chemo they would like to give me. They are fairly certain my hair will fall out. I will need to be driven to my chemo appointments (because I won't feel up to driving myself home and/or will have too many drugs in my system to be safe to drive home). They will put a port under my skin for the chemo treatments (click on this link to learn more about what this is). More than likely, I will become weak and fatigued after the first 2 weeks of treatment, going through periods of nausea (which they will try to control with more medication), and I will need to avoid being around crowds of people, esp. people who may be sick (so teaching college students is not an ideal group to be around after your white blood cells start to plummet). Treatment will last 6 months.

There's much more to say...part of the details can't be worked out until the results of the genetic testing comes back late next week (May 7) and until I talk to the surgeon about the various options in front of me. I won't have a firm plan in place for another 2 weeks because there are many moving parts and because I'm in a gray zone, there are decisions I'm going to have to make myself without clear black and white guidance from the team of docs.

So this post is actually about my emotional/mental state, but, more importantly, it's about what I'm going to need (and what Matthew will need) in the next few weeks and months, and how those of you who have made gestures and offers of help can help. This will be long, so please only read if you are serious about wanting to know how I'm doing and serious about what you can really do.

WHERE I'M AT:

I'm sad. This is all overwhelming and I've been trying to really get a big picture view of everything, and yesterday was my first glimpse into the long-term big picture view. And in the short run, it's grim. In the long run, I'm hopeful. But getting to that point requires lots of painful and spirit crushing stuff. I'm also angry--angry is still there, but we'll get to that later. Maybe I'll stop being sad in an hour or two or a day or two. But right now, the weight of what this all means has hit me, and I'm sad. However, me being me, I'm also still in work-mode, meaning I have a list of things to do and people to contact to get things in place for when chemo starts.

WHAT I NEED:

Understanding, support, and real material help. I need people to know that I'm ready to face this head on, to do the research and talk to the people I need to in terms that are not sugar coated. But I also need to do this at my own pace and according to my own mood. And my moods are going to change day to day (maybe even hour to hour). There will be times when I call you or you see me and I will want to and need to process what is going on with my cancer and treatment. There will also be times in which I will absolutely NOT want to talk about what is going on and I will want us to just have a conversation in which we never say those "C" words (cancer, chemotherapy). I need people to meet me where I'm at whenever possible. I'm not shy about telling people how I'm doing. I'm direct and upfront about what I'm going through. I need people to understand this--you can ask me very directly: do you want to talk about your cancer (and please everyone, you can say cancer or breast cancer--we don't have to use coded language--please don't--I believe in using the real words for the real things that are happening to me right now). If I want to talk about it, I'll tell you. If I don't, I will say that as well. I need people to be able to be real with me--to not pretend that this is not happening to me. But also not to treat me like a victim or that I'm on death's doorstep. Yes, I have cancer, but I'm still me--something that anyone who knows me at all will discern from this blog.

HOW YOU CAN HELP:

[Are you ready? Here's the list]

*Only offer what you really mean. I've been blessed with so many generous and kind and loving family and friends, and every single one of you has the best intentions in the world. You also have complex and busy lives in which you are grappling with infants and toddlers, and kids. With department politics and tenure files and publishing. With your spouse and partner. With your book manuscript and workplace dynamics. With your own illnesses or grief and mourning.

I am going to take you at your word--I will believe you when you say I can call you and ask for something, anything. So please be clear with me if you can't do something. I will not think any less of you. I will respect that you are busy or that you can't handle being in a hospital. So please only offer what you are ready to give.

*Do not tell me how to feel (and probably best not to tell me what to do). I've NEVER done well with people telling me how to feel or what to do. I would NOT make a good soldier. I know folks are very well intentioned, but I HATE being told to "Keep positive!" or "Think happy thoughts!" or "Negativity will only increase the cancer." There is nothing POSITIVE about chemo except that it may increase my chances of survival. I am not HAPPY thinking that I am going to lose my hair, my appetite, and my ability to function at my normal level of activity. And if negativity really increases the spread of cancer, well, I guess I'm fucked because I think negatively from time to time AS MOST SELF AWARE HUMAN BEINGS DO. [Ok, here's where I am clearly still grappling with anger issues].

I'm actually a glass half-full kind of gal. I don't try to look for the silver lining, but if it's there, why not acknowledge it. And why bemoan what you can't change. On the other hand, all of this is FUCKED UP (and yes, I swear a lot when I'm upset and damn it, I am upset). So I think that my acknowledgement of what I am feeling--of all my emotions as good or bad or ugly or seemingly inappropriate as it may be to you--is a way for me to handle what is going on and to be real. And I need to be real.

By the way, for anyone who has told me to stay positive or any other things of an advice nature or motivational speech kind of saying, I'm not trying to make you feel bad or to say that I don't feel the underlying good intentions behind your words. I just need you to be able to meet me where I'm at. So please, no more telling me how and what I should feel or what I should do--thank you, but it's not for me.

*Use your internal filter when sharing certain stories with me. It is totally natural for people to share all their anecdotes and stories about either their own experiences with cancer or the stories of loved ones and friends. Some of it has been very helpful and inspirational (I was on the phone with my Aunt Joyce for an hour last night--she is a 2x breast cancer survivor and has been in remission for well over a decade--she is someone who I would gladly model my life on, not just in terms of the cancer but in terms of the kind of person and human being she is because she's tremendous]. But other stories aren't going to be as useful (the ones about misdiagnosis and surgical mishaps and cancer recurrence? Probably not what I need right now). If you've got a story that you think could help me get through this period--bring it on! But if you know of a friend who died of stage 2 breast cancer...hold on to that one.

*I will need to be driven to my chemo appointments. Yesterday I did ask one of the 3 people who are part of my "oncology team" about whether I could drive myself to chemo. This is when she told me that the treatments would be more aggressive/hard than colon cancer but less than leukemia (where you are put in a clean room and stay in the hospital). Since I currently have relatives going through both colon and leukemia treatment, this was a barometer I understand but that made me feel depressed. Anyway, I will apparently need to be driven to and from my appointments. When I asked if I can take the bus (because the CW stop is right across the street from our house) Beth smacked both her hands into her face, shaking her head and the doc said (having figured out my personality at this point), "Well, I can see that you are the kind of person who is going to do whatever you want to do, but I can tell you that you are NOT going to feel up for taking the bus after a round of chemo." So I guess the bus option is out (plus there's the germ factor to avoid), so I'll be needing a ride there about once every 2 weeks. The treatment lasts a few hours, so better bring a book or laptop.

*I need you to avoid me if you are sick. Especially as my treatment progresses, my white blood cell count will get lower, so if you have young children or your partner is sick or you are teaching with a room full of kids who may have the flu, probably best for you not to come near me in the fall. I apologize in advance to all my friends with cute babies for all the offers of babysitting I made--you can take a raincheck from me, but it probably will all need to wait a year. I'm trying to figure out the teaching piece in all of this (sigh) but you don't have to hear about that from me now.

*Please check in with me and don't be offended if I don't return your phone call or email. I know some folks may be wanting to give me my distance and space. I appreciate that. But I don't want to be the one to have to constantly reach out to folks and share what's going on. If you are interested, please read this blog and please do drop an email from time to time. Like once a month or once a week. That's fine. The cards and flowers and food gifts and email messages and voice mail messages and phone calls and visits have all MEANT THE WORLD TO ME. They have given me real strength and have meant more to me than I have words to convey. I would love it if people could continue to do this. I will need more support of this kind--the emotional and friendly and community type--as the chemo treatments wear me down. It doesn't have to be a long message or email. Just something that says you are thinking of me and wanting to say hi is great.

*Please think about Matthew. Matthew has been my rock. He truly lives up to his eagle scout award and boy scout image. He has been absolutely incredible during all of this. But it's affecting him too. And he's going to need support. I'm not trying to worry too much about him or to play the role of his caretaker in all of this, but I know some of you have asked me how he's doing, and he's doing great, but it's also hard on him--very hard. And he will need to figure out what he needs and wants on his own time. But I just want people to remember that Matthew is my life partner in all senses of the word. And to support me is to also support him.

*Bruno is going to need to be walked. We'll need some volunteer dog walkers (or I'll need to hire a dog walker) so if you have a soft spot in your heart for our dear dog, please consider a half hour dog walking stretch at some point in the next few months.

And on that note, I'll leave you with a photo of the little guy taken at Ocracoke earlier this week:

Biopsy results are in: the good, bad, and definitely ugly

So the biopsy results came back early (I left Ocracoke yesterday once I got the phone call because I need to meet with folks on Thursday, today). I'm going to summarize the important parts in the second paragraph and then include more details in the paragraphs to follow. I should also note that since I have a 2pm appointment today with an oncologist there will be a part II either tonight or tomorrow a.m.

The good news is that the cancer is not in my left lymph nodes and they are fairly certain that it's not in my right either. The bad news is that there is cancer in my right breast--DCIS: ductal carcinoma in-situ. It is the best case scenario cancer, however, because it typically stays inside the duct and doesn't get to the lymph system--and mine is definitely in the duct, so the staging of my right breast is: STAGE 0 (ZERO). The other bad news is that instead of 2 smallish tumors it turns out that they removed a single barbell shaped mass in my left breast measuring 3.2 cm. The ugly news is that in both removing the mass in my left and doing the excise biopsy of the DCIS in my right, they were not able to get clean margins. Which means that they were not able to remove all the microscopic traces of cancer in either breast. Which means I need more surgery in both breasts to clean up those areas. And it also means that I still have cancer in my body and that they are worried that despite not finding it in my lymph system that it will pop up in other places in my body (like my chest wall) and so they really want me to start a treatment program (either chemo or radiation or perhaps even a combo of both--that will be discussed in detail below) as soon as my body has healed from these surgical procedures, which means the Tuesday after my wedding weekend.

[Aside: I know that some of you reading this blog may not know that Matthew and I are getting married in about a month. Actually, we're getting married in exactly a month from now--with lots of family and friends coming in from out of town. And if you are one of those out-of-town folks, yes, the wedding is still ON--you don't have to get a refund on your plane ticket or cancel your hotel reservations--any treatment program I start will not start until the Tuesday after the wedding, but I will DEFINITELY be starting something the Tuesday after the wedding, which means it's even MORE important that we all celebrate and have a good time.]

So what does this all mean and where do I go from here?

As I said above, I have a 2pm meeting with Dr. Lisa Carey at the Lineberger Center today. Matthew and Beth will be coming with me--and Matthew already created 2 pages of follow-up questions from the notes I took while on the phone with Dr. Amos. The team of cancer docs met yesterday (as they do every Wed. for their morning cancer conference) and they discussed my case and made various recommendations. Unfortunately, I fall into what they consider a "gray" zone.

[2nd Aside: I do this for a living--research and write about ambiguity and gray zones but DAMN IT, when it comes to cancer I do not want gray--I want black and white binaries!]

What Dr. Amos means is that there are several different options and approaches to take rather than being clear cut. I could, perhaps, still just do radiation with a follow-up series of lumpectomies. I could do chemotherapy (a more aggressive, systemic treatment) with follow-up surgery of lumpectomies or mastectomies. I could remove my left breast and leave my right intact after cleaning up the margins. We could try to do more lumpectomies of both breasts with some reconstructive surgery. I could do a bi-lateral (double) mastectomy and either do reconstructive surgery or not. I could do a series of both chemo and then radiation and then surgery. Dr. Carey will be reviewing all these treatment possibilities with me today as well as the stats involved.

And the stats are all about survival and recurrence, which they tend to measure in 5 year intervals.

For someone with Stage 2 cancer, the survival rate (with some type of treatment) is 86%. Whether you do radiation with lumpectomy or chemo with mastectomy, your rate of survival is the same. Doing a mastectomy (a more radical surgery) doesn't help prevent against rate of distant recurrence (metastasizing in the lymph or other areas of the body--which is what the real concern is about because once the cancer gets to other areas of your body it can mess with your major organs and you can die); mastectomy only prevents against rates of local (breast tissue) occurrence.

And doing a bilateral/double mastectomy is no small thing. It's more than just the loss of your breasts--there is some significant physical therapy involved because they are also removing some muscle [Updated, 4/30: actually, according to my Aunt Joyce, they only do it if they didn't get clean margins there] and you have to retrain your arms to move back (think of rowing a boat--that movement--that's going to be hard/difficult/painful--in my world, it means when can I swing a golf club again because it's the backswing that will kill me). And of course, there's also the loss of my breasts. I have to admit, being a smaller breasted woman, I've never given my thought to my breasts. I mean, I've never obsessed or bemoaned them. They've been fine and for the most part I've always hated wearing bras because I find them constricting and am small enough not to worry about such things.

[3rd Aside: I recognize that this is all probably more information than anyone really wants about how I think about my body--and perhaps esp. awkward for certain of my readers, but I'm really going to be no holds barred about this stuff right now because it's where I'm at.]

But women's breasts are intimately connected with their sense of feminine and female identity. And I'd be lying if that didn't deeply affect me. That as much as I may not seem "vain" about my breasts, and as much as I certainly would be more than willing to do bilateral mastectomy in order to give myself the best chances of survival, it's still something to think carefully about and to recognize my own sense of loss and grief about. And my own discomfort, emotionally, about what it will be like to have them removed and to live my life as a breastless woman.

Then there's the treatment. I was really hoping for the best case scenario, meaning no chemo. Because chemo wracks your body. You hope to kill off the bad cancer but you also end up killing good cells too--which is why so many people throw up with cancer and have their hair fall out and get really tired. Of course this also depends on the dosage--how strong a treatment regime they use. And not everyone loses their hair. One aunt and my uncles had their hair thin rather than fall out. But I must confess that I am rather vain about my hair. It is, in fact, the only bodily part of me that I'm truly vain about. I used to fly to Boston for the first 2 years after moving to NC to get my hair cut because my old hair dresser was in Boston and I didn't trust anyone in NC to cut my hair.

[4th Aside: Luckily (thanks to Jane D) I found David Sutton (of DB Suttons) and now I don't have to have such a huge carbon footprint--I should note that my trips to Boston weren't just to cut my hair--there are a lot of conferences in Boston and I still have friends there, so I was able to just go once every 9-10 months.]

Luckily Beth and I found a website where you can cut off a 10 inch (or more) ponytail and they will make a wig of your own hair. And since I've been growing out my hair for the wedding, I should easily make the 10 inch mark. Yes, I know, a silly thing to worry about compared to my overall health--I mean, I know your hair grows back. But I just can't rock the scarf--I HATE those scarves (please no one send me a head scarf!) and the baseball cap look is only going to get me so far.

The other thing about chemo, aside from its side effects, is that it takes a long time. It's 4-6 months. And then if I need radiation, I wait 3 weeks and start that regime. And then I wait another 3-4 weeks and I do surgery. Which oddly enough (minus radiation) places me about winter break to do surgery, which means I may not have to take any time off from teaching. Although that's another thing I'm trying to figure out--should I ask for some kind of teaching reduction if I do the chemo treatment (and if they recommend it--which Dr. Amos said everyone was leaning towards recommending in my case). How will I tolerate the chemo? How often do I have to go in? How sick will I become? How much help will I need?

These, and many more questions, are what I'm trying to grapple with. If you have opinions, feel free to leave them in the comment section. And if you are still reading, you are a real trouper because this was REALLY LONG (that's why I do the summary in the 2nd paragraph). So I think it's time to end, but I'll leave you with an image from the Ocracoke (where I'm headed back to this weekend and where I'll be through late May):



P.S. If anyone is wondering (as several people I've spoken with have wondered about) why they are advocating for chemo and then surgery, this is taken directly from Dr. Lisa Carey's faculty profile at the Lineberger Center:

"[T]he members of the UNC Breast Center have a long commitment to improving treatment of early (nonmetastatic) breast cancer, and have been early investigators in the use of neoadjuvant, or preoperative, chemotherapy for breast cancer. In part based upon work performed at UNC, we now know that women do just as well if their chemotherapy is given before surgery as after, however the chemotherapy-first approach means that they are more likely to save their breast. In addition, with preoperative therapy it is possible to tell if the drugs are working since the tumor is still measurable when the chemotherapy is given first. Part of Dr. Carey's clinical research program investigates new drugs and combination of drugs in preoperative therapy."

Beach break

So I'm here on Ocracoke island and it's just so wonderful here. We took a ferry over from Hatteras

[me on the ferry]


[Beth on ferry]


[Bruno on ferry--he snuck into the passenger seat!]


Anyway, it has been just nice to be here. I love the ocean--just the smell of the saltwater and the sound of the waves. And while we do have wifi we don't have any cell phone service, so you'll all have to forgive me if I don't return phone calls (or email messages either--I'm reserving the right to just check out).

And with that said--good night.

Outer Banks, here I come!

It's Sunday night and I'm exhausted. If you have tried to call or emailed me, I'm sorry I haven't responded. Today was the hardest day post-surgery since the local anasthesia has worn off and it's just the oxycondone to keep me pain free (although I have to tell you, I get why people get addicted to this stuff--you fly pretty high!).

Anyway, Beth is here with me and we're headed for the Outer Banks tomorrow, specifically Ocracoke Island. For anyone who doesn't know the magic of those two words, do a google search and you'll understand why I need to leave here. The waiting is hard. I'm trying not to think about Thursday, but it's "BR" day (Biopsy Results). So much of future treatment will depend on the results of the biopsies on Thursday.

Which means I need to head out of Dodge. I will miss Matthew (I get to bring Bruno--YAY!) and I will miss my friends and the community support that has overwhelmed me in its generosity here and all over. But I need some time away. Time away from email and my computer--even though I'll have access to both. But psychologically and emotionally it will just feel good not to be here amidst my daily life waiting.

I'm not a patient woman. I don't want to be a patient woman (in all senses of that word--a female patient, a patient female--gotta love the chiasmus!). I want news. I want to know how to move forward. Instead, for the next few days, it's limbo time.

So if I'm going to be in limbo, I may as well do it at the beach.

Looking ahead to the topic of a future post: Cancer observations (all the things I've noticed happen to me or that people say to me or how people react to me post-diagnosis revelation).

Pre-Op & Post-Op and I'm A-OK

So I'm sitting at home watching the Kiera Knightley version of Pride & Prejudice (go Jane Austen!) with best friend from CA Beth and Matthew G-R-A-D-Y (spelling out his name is somewhat of an inside joke, but just sing the B-I-N-G-O song and you'll get most of it).

All in all, I'm good. I'm not even particularly groggy because they were able to sedate me really well rather than giving me general anaesthesia, and aside from being thirsty and a big hungry (all of which got solved in quick fashion both in the hospital and at home), and feeling a bit loopy (no more than when I've had an amaretto sour) I'm doing just fine. So that's the good news--everything went well and I'm healing and resting just fine. If you want more of my long-winded details, keep reading. And if you want to check in later, come back on Thursday, April 30 or Friday morning, May 1 (May Day!)

I have to give big props to UNC Hospital and especially everyone who took care of me from the time I checked into the Lineberger Center to the post-Op at the Ambulatory Care Center. The strangest thing that happened to me was that I almost fainted twice while they were doing some mammography films of my left and right breasts. Because you cant eat anything after midnight or drink any water after 7:30am, I was pretty much on a food and water deficit by the time I ended up being seen at 10:30am. So in the middle of the radiologist and mammography technician doing breast imaging on me as prep for the surgery, I started to get that muffled sound and then see stars and luckily I told them I thought I was going to pass out and before you knew it they had me lying down in this chair (which luckily reclines) and the doc had my feet literally lifted up by her hands and the tech had a cold wash cloth and was telling me to breathe. Apparently mine is not an uncommon reaction to having my breasts squished in the machine with no food and water. And the doctor said that because I hadn't eaten and was so skinny (and Lord, when was the last time someone called ME skinny???) that this was what was causing the reaction. That plus any anxiety I was feeling.

And it dawns on me that OF COURSE I am feeling anxiety in my body, even if I'm not necessarily recognizing it consciously, so how smart is my body for having this reaction and saying "Whoa! What's going on--this is all overwhelming so I'm going to shut down now!"

Anyway, from the Lineberger Center they took us over in a special van to Ambulatory Care--and Kathy from the Mammography clinic accompanied us. Again, I cannot say enough good things about this woman. When I related the story of how I had to fight and argue with the nurse practitioner guide who is supposed to HELP ME in this process to get a biopsy earlier and how she insisted that I couldn't have one--the tech and the nurse shook their heads and told me that that was simply WRONG and this nurse guide person was wrong not to schedule a biopsy for me sooner. And that it was a good thing that I advocated for myself and spoke with Kathy and demanded that I have a biopsy as soon as possible.

And if there's one thing I've learned in this whole process, it is that it is so CRITICAL to ask questions and to be your own best advocate and not to let people tell you to wait or let the process run its course. If that was the case, I would only be getting a biopsy now and I wouldn't know I had cancer until the following week and then who knows when I'd have the surgery scheduled? So for any of you reading this: if you ever find yourself having to go through some kind of health issues, be proactive, be your own advocate, ask questions, get angry if you have to, and demand the tests that you need!

Anyway, back to the surgery story. So at the Ambulatory Care Center they had me all gowned up with my booties as part of the pre-Op. Matthew and Beth were with me for pretty much everything (except some of the film stuff in mammography--they didn't see me almost faint) and Beth took this photo of me with my booties (thankfully she didn't get my face):



The surgery went well--I have no recollection of it, thank goodness, and the surgeon, Dr. Keith Amos (who is wonderful--can't say enough good things about him!) came out afterwards and talked with both of them about how things went. Surgery went smoothly--they will be sending out the tissue samples/tumors/calcifications/lymph nodes for full pathology reports/testing. And I'll have reports back on Thursday or next week (April 30).

So I'd say if you want another update on what's going on with me, check in Thursday night or Friday morning. I'll definitely be blogging about it. Thanks for reading!

Am I really a robot or why do I keep plugging along?

So from the time of my self-diagnosis to the time of the surgery (please see this post for the latest) to remove the two malignant tumors it has been about 4 weeks. Pretty amazing in the scheme of things to move so quickly from self-detection to diagnosis to surgical remedy.

I know many of you have been very concerned about me--not just from a physical point-of-view but from a mental/emotional health point-of-view. Because I just seem so unfazed by it all. I am all business--direct and upfront about what I need to be doing to get treated and move forward. Many of you have sent me messages of love and support that also admire my strength and resolve. Others have been concerned that I seem to maybe be in a bit of denial or trying to do too much or am not dealing/processing with the emotional component of the disease.

But here's the thing: I'm not trying t be strong or brave or courageous. And I'm not in denial--I know I could die from cancer. There have been too many instances of cancer in both sides of my family for me not to understand the ramifications of this disease. I'm also not trying to be superwoman. Not consciously at least. Right now I'm just doing what I think needs to happen to give myself the best health outcome and odds of survival.

And perhaps what helps is knowing that breast cancer is a very treatable disease if caught early and if treated immediately (and fairly aggressively or at least assertively). I have the examples of so many women close to me who are 25 plus years in remission after going through their own surgeries and treatments. None of it was easy for them. And I know it won't be easy for me. I am truly not thinking that this is no big deal. It is a big deal. And somewhere inside me I know this, and I know that I am waiting for a time when both my body and mind can slow down.

When that time happens, I am sure I will be in for a break down. Huge. It's a fairly common pattern that I follow. Highly functional in the midst of a crisis or grief--good at compartementalizing when I need to and being organized and getting things done. But when things finally settle down, I open the door on all those emotions and they come flooding in.

It's a coping strategy and defense maneuver--one that I'm not even consciously trying to deploy but that just happens. I know this worries some people and freaks people out. I think it's also evident that my current way of handling everything is to process with language (hence this blog) and to feel anger--that is the most accessible emotion I have right now--and oddly enough, it feels productive to me (whether it is or not remains to be seen, although I will point out that if I hadn't gotten enraged and then moved by my anger to demand a biopsy appointment, I would not have gotten an appointment until right now--although I also owe Kathy at Mammography a HUGE THANKS for her part in getting me seen immediately--THANK YOU KATHY!).

Anyway, I wanted to write this because I'm not superhuman. I'm not even particularly brave or strong. I'm just me and this is the way that feels right to handle things for now. I know I'm going to need help to get through the next few weeks and months. And I promise, I will ask for help. So thanks for trusting me and letting me have the space to figure out how I want to deal with all this, emotionally and mentally. And if you do see me breaking down or freaking out I hope you'll be OK with that part of me too.

Meeting with the team of oncologists -- DAMN! IT WAS LONG!

So today was the big "C" day, which stands for "conference" or it could stand for "cancer" or just "chaotic" because all three sort've categorized my various meetings. I'm going to summarize in this second paragraph so that anyone who is just skimming or stopping by to get the take-home message can skip the details that will follow from the second paragraph.

The most important person I met with was Dr. Keith Amos, the surgeon who will be doing the 3 procedures on me Friday at 9:30am (and I should be awake and ready to go home by 3pm), which are:
1) left breast lumpectomy to remove the 2 tumors--the largest of which is 2.5 centimeters
2) left breast lymph node sentinel biopsy -- to determine whether the cancer has infiltrated my left lymph system.
3) right breast excise biopsy to remove the calcification points that the cancer team is concerned about because they are of indeterminate status.
I will get the results of the lymph node and right breast biopsy on Thursday, April 29, and after I get the results I will be able to figure out a treatment plan. At minimum, I will be on tomoxifen (cancer drug) for the next 5 years. In the best case scenario (which means no cancer in right breast or left lymph nodes) I would only need to have radiation and not chemo in addition to the tomoxifen, and no other surgical procedure.

Ok, so that's the bare bones of it. Here's a bit more detail for anyone interested.

So, as I noted above, the best case scenario is that the only cancer I have is the two tumors in my left breast, which are relatively small. The next best scenario would be that the right breast has malignancies that are contained within the duct (what's called "in situ") because that means that there's no chance of them spreading to my lymph system. If the cancer is no "in situ" and is invasive (meaning it went outside the duct and into the breast tissue) then I'll need to do a lymph node sentinel biopsy of my right lymph nodes.

The biopsy results are really key to figuring out my treatment options. But at this point, there probably won't be any more surgery (aside from another sentinel biopsy depending on the results of the right excise biopsy). Whether I do chemotherapy vs. radiation or a combination of chemotherapy and radiation (and it would happen in that order if I had an aggressive or late stage cancer, with 4-6 months of chemo and a 3 week break before 4-6 weeks of radiation) depends entirely on whether the cancer is in my lymph nodes and how widely it has spread there. And whether or not I need or should have a masectomy will also depend on the biopsy results--but the good news is that a lumpectomy with radiation has equal rates of survival as masectomy with chemotherapy--the key difference is rates of recurrence (there are virtually none with masectomy since you get rid of all the breast tissue). Anyway, it seems like I won't have to make that kind of a decision until well after the treatments.

In terms of treatments, radiation, as I noted above, lasts 4-6 weeks and I would have to go in everyday for 5 days a week (basically M-F). The actual radiation procedure lasts 5 minutes but the visit itself takes about half an hour (you know, the gowning, the waiting, etc...). They didn't go into detail with me about chemotherapy because I wasn't scheduled with a medical oncologist--which I suppose means that they are so hopeful/positive about my cancer that they didn't think I needed to see a medical oncologist (who is basically the person who would handle my medication/chemo treatment if I needed it).

I probably saw about 10 different medical professionals, all of whom seemed to know the basic facts about who I am, what I do, where my cancer is, what my prognosis seems to be, and the fact that I'm getting married at the end of May--because they all wished me congratulations and then proceeded to go into details about their particular interest or knowledge about my case. This is one of the benefits of being seen at a cancer hospital--that they have a whole team of people who review all cases and weigh in on them, and then they come visit you one by one to talk to you about your case.

Anyway, there's a lot more I could say about the visit, but I think this is a long enough post and has the most relevant information in terms of my overall health outcomes. Everyone I met with seemed very hopeful and my surgeon seemed really confident about everything--which is exactly what I want from my surgeon.

Finally, I will end with sharing part of why this blog is called "No Fucking Pink Ribbons."

I was given a huge folder full of information related to cancer care, particularly my kind of cancer. And inside is this thick booklet, with the following image plastered on the front and back as well as inside the pages of the booklet:



I have no idea why this woman is throwing back her head and throwing back her hands--unless she is a gymnast who has just finished landing a triple somersault backflip off of a balancing beams (thanks to Jordynn for astutely noting that this is exactly what she looks like!). But the whole theme of "My Health, My Journey" is ridiculous! I mean, the whole booklet describes breast cancer as a "journey"--WTF???!!! It doesn't even work as a metaphor. I DO NOT feel like I am preparing for a trip. To the hospital? To the clinic? Cancer isn't a "path" -- it's a disease that reproduces in your body and will kill you if you don't do something about it. What, exactly, is journey-like about that???!!!

Anyway, I took out my disgust and frustration on the oversized bookmark they included in the back of the booklet (although I should note that Ashley says that it's way too big to be a bookmark and appears to be more a door hanging except who the hell wants to hang this thing on their door???):



Finally, Beth decided to be really cheeky and send me a box of items from the "Pink Ribbon Shop," including this great thermal mug that has a built in tea infuser for me to make tea! I decided to do some decorating of the pink mug that was more in keeping with my personal motto:



If you've read this far, you're a champ! And thanks to Jordynn for the flowers, to Ashley for dropping off dinner tonight, to the English & Comp Lit department for sending flowers over the weekend, to Laura for putting a sign on my door announcing the end of my office hours, to Rebecca for being such a champ and being with me through my onslaught of appointments starting at 10:30am, to Mai and Jane for being part of my support team of funneling communication, to my Mom for being my nurse-sounding board, to all of you reading this for all your messages and phone calls of love and encouragement, and especially to Matthew for being a rock and pillar for me--as well as being a source of unconditional love and support who is also OK with me being one angry woman because having cancer just sucks and it pisses me off.

The diagnosis so far

OK, so here's my story of breast cancer so far:

About four weeks ago I noticed a lump in my left breast when I was at home. I saw my doctor the following afternoon and she confirmed that it was, indeed, a lump, she didn't know what it was, and since I turned 40 this year, recommended that I go in for a mammogram. She sent me to Wake Radiology (the one off of Estes) because she thought they'd be faster than the machinery of UNC Hospital, and the following week I had a 2 hour appointment there, with mammogram films taken of both breasts (but esp. the left) and an ultrasound of both breasts (but esp. the left). A radiologist spent half an hour with me palpating my left breast and told me that there were actually two "masses"--one small one underneath the one that I could feel that was at the surface of my breast and exactly at 12pm if you think of my breast as as clock. He said he didn't know what it was (never comforting) and recommended a biopsy as soon as possible, which meant he would call my primary care physician and she would have to get a referral to get it biopsied.

At this point, I enter the bureaucracy of the UNC machine. Because UNC's hospital system is so vast and scheduling gets booked up quickly. They also have a certain procedure for everything and although I had had films taken at Wake Radiology, they told me that until I had been seen by their mammography dept and been seen by their nurse practitioner I could not get a biopsy appointment. So last week, despite numerous phone calls on my part to various nurses and to my own doctor, I went to the clinic, got more films of my right breast taken, saw a nurse, and then got an appointment for a biopsy on my left breast on Wed, April 14. However, when I went in for the biopsy on my left breast, the radiologist (who was a really nice guy) told me that they are also concerned about my right breast. Back in 2005 I had a mamogram done on my right breast (well both breasts, but my doctor was concerned about the right because of some small lumps there. The 2005 mammogram films turned out to be fine--just some benign calcification points. However, the 2010 films of my right breast show an increase of these calcifications--and what is of concern to the radiologists is the pattern that a few of them have formed--that they seem to be lined up in a row, which suggests that it could be cancer inside a breast duct. So they want to do what's called an excise biopsy of my right breast because a needle biopsy wouldn't yield conclusive results (so they think) given the size (small) and area (deep inside my breast) of the calcification points. The excise biopsy is more invasive--it will require me to be out -- like when you have your wisdom teeth pulled -- and they will also remove surrounding tissue from the points in order to get a full pathology report. If it comes back positive, we'll have to test my lymph nodes on my right.

Back to the left breast. The results on Thursday came back positive for cancer in both left breast masses (tumors I guess we should now call them). They are in the same cancer family and they are medically referred to as "invasive ductal carcinoma" which means that the cancer started inside a duct and then erupted out of it and formed the mass that I felt at the surface of my breast. But it doesn't mean that it has spread beyond my breast tissue to my lymph system--but I'll get to that in a minute.

The next piece of information in all of this is that I found out yesterday from the surgeon they assigned me, Dr. Keith Amos (here's the link to his page) that the type of cancer I have is actually the most common kind (which is good). It is positive for both estrogen and progesteron receptors and is negative for HER2. Which means this kind of cancer is sensitive to endocrine therapy and since I am pre-menopausal it means that they know, definitely, that tomoxifen will be part of my therapy.

Now, I should pause and let you know that I may not be spelling any of these things correctly and that I am using a lot of medical jargon, some of which I sort've understand and other things I just figure I'll ask the "why" and "how" about later. Like the thing about the receptors--I don't know what it means and when I started to ask Dr. Amos he said that for the time being, what I needed to know is that it is very good news. So there you have it.

Anyway, after I told him a bit about the kind of person I am (direct, don't want things sugar coated, doing OK, emotionally, so far, although lets face it, a freak out and total break down is probably going to happen at some point--but for the time being what I said is that I want to know as much as I can about what is going on with me and I want to make decisions that are as fully informed as possible), he could respond to me in the state I am, which I really appreciate. I am in business mode and I think he understood that I wanted to have things laid out as plainly as possible and wanted to be as proactive as possible.

So here's where things stand:

On Wed (tomorrow) I will have a series of appointments from 10:30-3:00pm with various medical specialists in oncology--a geneticist, a radiologist, my nurse practioner, Judy Swayze--who will be my guide and hopefully my advocate through this process, Dr. Amos, and then a meeting with the pre-care unit that will take my blood and run an EKG on me--all necessary prep work before surgery.

On Fri, April 23, I will be going in for out-patient surgery sometime in the late morning. Dr. Amos will do an excise biopsy on my right breast, as well as a sentinel biopsy of my left lymph nodes (the ones underneath my arm) and he will also do a lumpectomy of my left breast, removing the tumors and sending it to this company that specializes in ankatype (sp?) testing (and apparently there's one and only one company that does this kind of specialized cancer testing). The company will try to determine the gene profile and thus the likelihood of recurrence--they will give the tumor a score and they will also crunch some numbers in terms of how likely I will respond to or even need chemotherapy.

[Addendum, April 22, 2010: My friend Sheri says that it's actually called "onco type" testing and I learned from my surgeon that they will only send the tumor away to be tested if there is cancer in my lymph system, because the test is helpful for a determination of chemotherapy. If I don't need chemo (which I won't if it's not in my lymph system) there's no need to send it out. Sheri also explained that HER2 negative vs. positive relates to the aggressiveness of the cancer--negative means it's not as aggressive as positive which is defintitely good news, although there are some amazing drug therapies out there that are very positive for HER2 positive]

There is a possibility that I may not need chemo if it hasn't spread to my lymph system--and it's also a question mark at this point if I'll need or should have a masectomy, but it might be a possibility in terms of a prophylactic measure to prevent cancer from occurring in the future. This is all part of what I'll be discussing with the team of docs tomorrow.

And in case anyone is wondering, Dr. Amos assures me that by 8pm on Friday I should be a bit groggy but pain free and good to go.

Anyway, that's the latest for now. The biopsy results will take 3-4 days to process and the tumor results will take even longer, so I won't have the complete picture until well into next week. Once we know about the right breast, though, we'll be able to make a definitive treatment and surgical plan and move ahead.

Thanks for reading--I know it's long--and hopefully you just skimmed over parts if you have heard it already. If you are dipping in and out of this blog, try checking in on Thursday and next week Friday--I'm sure I hope to have more news by then. And thanks, everyone, for your love and support. I've really appreciated the email message and the phone calls, even if I haven't had the energy to return all of them. Please know how much you all mean to me!

And so it begins...

Hello--for some of you reading this first blog entry, you are intimately familiar with my story. Others may only have bits and pieces of it and still others may be reading this for the first time because you have just found out that Jennifer has breast cancer. I decided to start this blog as a way of keeping family and friends, near and far, in the loop with respect to the diagnosis, prognosis, and treatment options available to me as I move through the stages of cancer treatment. I know that there are wonderful pages, like Caring Bridge, dedicated to patients going through serious and in some cases terminal illness.

But after looking at them, I decided that since I already have been blogging for a few years, I was more comfortable with this format. And I think it is in keeping with the personal motto I've developed for myself from the moment I started to walk in and out of doctor's offices at the UNC Lineberger Cancer Center: NO FUCKING PINK RIBBONS. I hate those suckers. First of all, I HATE the color pink--I own one hot pink shirt from Ann Taylor (an attempt to get in touch with my feminine side a few years ago) and I'm not sure that I can wear that shirt anymore now because I just feel marked by the color pink.

Don't get me wrong--the Susan Komen foundation and other organizations who use the pink ribbon as a tool to galvanize fund raising for research and support is wonderful. And I know women who embrace the pink ribbon and see it as a source of strength and inspiration. So I don't want to take away from the power of the symbol for others.

I'm just saying, for ME? Not going to work. And I refuse to be marked by the pink ribbon or by the cancer. I refuse the rhetoric and the marketing and branding that the pink ribbon signifies (and ah, yes, I am still an academic to the core and overanalyzing that little piece of fabric). So I thought an apt title for this blog as well as a motto for the way I'm approaching the cancer is NFPR: No Fucking Pink Ribbons. I don't want pity, I don't want platitudes. But I would love your support and encouragement and strength and resources (and in some cases I may literally need your help) as I move through this process.

OK, enough. The next post will be the saga so far. Feel free to keep reading or not--that's the great thing about blogs, you can dip in and out. And feel free to leave a comment or ask questions. I've got a team of friends who are also signed on as co-bloggers who may be writing and posting from time to time when I lack the will or energy to update folks.

Love,
Jen