Monday, September 28, 2009

Making Strides...

Unfortunately, I don't mean that I am making strides towards having a definitive treatment plan, you know, the kind with starts dates and that kind of semi-important stuff, although maybe (pretty please with whipped cream on top) more information along that line of things tomorrow.

No, actually I am talking about the Making Strides Against Breast Cancer event. I guess events, plural, would be more accurate. Making Strides is a series of walks held across the country by the American Cancer Society to raise money and awareness for breast cancer.

My "baby" sister, Betsy, decided to participate in the walk in Raleigh this coming weekend (October 3rd) as her way to feel she was "doing something." I think it has been really difficult for her, being clear on the other coast and not really feeling like she can help. I know I would would feel much the same way if our places were reversed.

I've heard from many of you back in NC and I know Betsy would love to have some walking partners so I'd like to encourage any of you that have flexible plans for the weekend to consider coming out and walking with her (sorry for the last minute notice- I'm a bad sister and didn't get this written until now... twenty lashes with a wet noodle for me!). There is no registration fee to participate though you are encouraged to make a donation and/or raise funds.

If you cannot participate yourself but would like to make a donation Betsy (and the American Cancer Society) would love that as well.

Here is a link to her personal Making Strides page where you can glean a bit more information about the event, sign up to participate, or make a donation:

For those of you out here in the suddenly rainy PNW with me, there is a walk this weekend in Bellevue which I am considering participating in myself though I won't be making a final decision for a couple days (see above referenced lack of information from medical team making my life difficult to plan *ahem*). And for you Californians, there are several upcoming events during October depending on where you live.

Anyway, just something to consider as we head into Breast Cancer Awareness Month (holy cow! is it really almost October? good grief.)

Wednesday, September 23, 2009

Not Sick. Sort of.

Cancer is weird.

In so many ways, I am no different from that person I was four weeks ago when I stood in the shower and felt a lump where there shouldn't be one. Yet so much is different.

Medically speaking, I have a disease.

Disease = Sick

I don't feel sick. I feel perfectly fine. Well, not perfectly fine, I mean, let's be honest- the 30+ extra pounds I've been carrying around since hatching the kidlets isn't exactly making me feel like I can conquer the world but it only is a slight damper on things- I still feel pretty darn good. Certainly not sick. Just like maybe I-should-cut-out-the-late-night-snacking-and-climb-on-my-elliptical-every-now-and-then-for-goodness-sakes fine.

If I had say... bronchitis, could I get up tomorrow and go for a run around Greenlake? Probably not. I have cancer. Could I get up and go for a run around Greenlake tomorrow? Most likely, aforementioned 30 pounds and hatred of running not withstanding.

Cancer is odd in that (in many cases) the disease itself doesn't make you feel debilitated (at least at first, obviously late stage cancers are a whole 'nother kettle of fish). Instead it is the treatment that can make you an "invalid". For just a second, in your mind, imagine a cancer patient.

Got the picture?

Is your patient bald?

I know in my mind she is. Isn't that odd? Cancer doesn't make you bald. Chemotherapy makes you bald. Not everyone who gets cancer has chemo and yet that bald head remains as an icon of cancer.

Where am I going with all this? I don't know... just stuff that's been running around in my head this week. I had 25 minutes to kill yesterday while I was in the MRI machine- the mind wanders.

Ahhhhhhhh... she mentions the MRI. That is why you are all reading this- to see how the MRI went, right?

Well, all of you except for the few poor souls who might actually expect there to be knitting on a knitting blog. For you, hang tight, I'll have something for you in the next post assuming no medical bombshells between now and then. For my sake, I hope there is knitting in the next post. I've had just about all the medical bombshells I can handle for now, thank you very much.

So back to the MRI. My MRI and ultrasound did get moved up a day early- many thanks to all of you who sent cancellation vibes out this way, it worked.

The actual procedures are really very unexciting (MRI- cramped, LOUD, did not like the IV contrast as it felt really cold and icky going through my veins; ultrasound- gooey gel combined with fuzzy pictures you can't understand without silly amounts of school) so I'll spare you the gory details.

The interesting part is the results. And, at least at first glance, the results look good. The ultrasound did not turn up any oddities in my lymph nodes and the initial scan of the MRI images showed no new areas of concern. I still need to get a final read of the MRI but for now I am cautiously optimistic.

I won't lie. I was incredibly nervous going in yesterday. I'm not sure if I've ever been that nervous before... maybe when I auditioned for NC School of the Arts but I'm not sure. Yesterday was the first time in this process where the news was not worse than I expected, and that was a Very Good Thing. I'd like to say I'm excited but since I don't have the final-final read, I'll just go with cautiously optimistic for now.

And so, now I can move on to treatment. To chemo.

I can be that bald person.

Even though the prospect losing my hair Freaks Me Out...

(like a really, crazy all out of proportion freak out: please oh please God- I love my ponytail! you can have my boobs but leave me my hair)

Get a grip, Katie!! It WILL grow back. So I can be that bald person. I can even be sick. Because sick and bald mean I'm making progress and progress is what it is all about.

Friday, September 18, 2009

Patience is Not My Virtue

I am an impatient person.

Did you hear that? I think I just heard my parents snort in amusement/understatement on the other side of the country.

It's somewhat ironic because I am also a terrible procrastinator. If there is something I need to do, say the dishes or a paper or some other potentially unpleasant task, I'll usually delay before getting around to it. Not so if it is something I want to do. In that case, woe to the person holding me back.

I bring this up because I am now at the end of Day 2 of the Great MRI Wait. As I wrote in the last post, I had hoped to get squeezed in at the end of the day yesterday (Wed.) and as it turned out they did have an appointment for me. Unfortunately, there was a small insurance snafu and the clinic couldn't get authorization for the MRI.

NOW, before someone starts spouting off about the nation's health care system, let me say that this snafu was the result of someone not doing his job and no matter who runs health care: private companies, the government, Lollipop Guild or Martians- there will always be a moron in a cube somewhere not doing his job.

Thankfully everything has been cleared up and I am all authorized to go lay in a big loud tube and hold very still (not my strong suit) while people take pictures of my innards- wheeeeeeeeeeee. good times.

However, the imaging clinic is now fully booked for the week. And so I wait.




I am scheduled for my MRI and ultrasound next Wednesday. In the meantime, while I fidget and tap my foot, my coordinator is checking for cancellations every couple hours and will reschedule me if some thing opens up. I really hope there is a cancellation because I'm not sure I can make it to Wednesday.

I guess while we're all sitting around twiddling our thumbs I can bore you with some more medical stuff.

In the last post I told you that I'll be doing chemo first followed by surgery but I was too tired to explain the treatment approach, let me see if I can explain it now. Bear with me, I need to work through some information first...

... and take notes, there may be a pop quiz.

I think almost everyone is familiar with the term "Stage", as in, "She has Stage II breast cancer." Stage is based on the size of your tumor and how far your cancer has progressed or spread in your body starting at Stage 0 (a very small tumor or precancerous mass) to Stage IV (spread to multiple organs). A term you may be less aware of is "Grade."

A quick explanation before I explain Grade: breast cancer can be in Situ which means it is contained within the duct or gland it began in or invasive which means that it has broken through the bounds of its original duct or gland and is spreading into the surrounding tissue. If left untreated, an in Situ cancer can become invasive.

Grade is a term which is used to further describe invasive cancers. It describes how your cancer cells look compared to normal cells when under a microscope. The more closely a cancer cell resembles a normal cell, the less aggressive it is:
  • Grade 1 - cancer cells appear almost normal, are generally "neatly" arranged and are not growing quickly; my medical oncologist described these as "lazy cancer"
  • Grade 2 - the cells appear somewhat abnormal but still maintain some semblance or organization
  • Grade 3 - the cells look abnormal, are disorganized (my medical oncologist described them as chaotic), and tend to spread and grow rapidly

If you remember from my last post, my cancer is Grade 3- lucky me.

As a result, is is probable that there are already cancer cells elsewhere in my body right now. Mind you, these are cells, not tumors (don't freak out) but a few stray cells here and there, kicking back and waiting to be evil. I suppose, if I am honest, there is the possibility that there are other tumors- otherwise we wouldn't be doing the chest MRI and lymph node ultrasound- but for now we'll be cheerfully positive and assume there aren't.

One last key piece of information- have I lost you yet? In my last post I referenced my Ki67 "score". Let me quickly explain this measurement. Ki67 is actually a marker that is present in cells that are actively growing and dividing but is not found in resting cells. A Ki67 percentage or score tells you, if you are looking at 100 cancer cells under a microscope, how many of them are actively trying to duplicate themselves at any given time. In my case, it's 85- anything above 26 is considered high. I'm trying to explain to my cancer that it has no need to be such an overachiever but thus far, it is ignoring me...

As I am sure you have gathered, the combination of an aggressively spreading cancer and a quickly replicating one is not ideal (don't try this at home kids!). Thus, in addition to treating the actual tumor in my breast we also need to address the potential presence of cancer cells in other areas.

The only treatment option that targets cancer cells everywhere in the body is chemotherapy. Radiation and surgery both only target specific areas. In order to make sure all the cancer cells are wiped out, I need to have chemotherapy.

I am choosing to have chemo first because this approach gives any stray cell less time to decide to become active. If the little buggers are floating around I want them eradicated before they decide to join the party.

In addition, postponing surgery until after chemo will actually be helpful in determining if my treatment is effective. By leaving the tumor (for now) my oncologist can actually track it and see if the chemo is working- if it is, the tumor should shrink, or at least not grow. If that doesn't happen, we know the course of treatment isn't effective and we can switch to different drugs. If the tumor is removed, you don't have a benchmark to measure against and you are basically assuming (hoping) the chemo drugs are working. Personally, I'm all for having hard evidence, hence pre-op chemo.

So that's the plan...

OK, I suppose I should go at least pretend to try to sleep even if all I'm really doing is staring at the ceiling while sending cancellation vibes to the MRI gods.

Good night!

Tuesday, September 15, 2009

A Long Day

I didn't sleep well last night so forgive me if this post isn't terribly coherent- it was a long day and I am really tired.

Before I jump into some details I just want to express my deepest gratitude to all of you who have expressed your love and support. It means a great deal to me to know that you are all behind me forming a web of support that stretches across the whole country. The fact that some of you offered to get on a plane to come help me blows my mind! As I said to a couple close friends of mine over the weekend, "I love everybody!"

As I mentioned last night, today we met with my treatment team at SCCA: medical oncologist, surgical oncologist, and radiation oncologist. We were there for five hours with a one hour break. It was long and we are awash in information. I'm going to try to keep this relatively short because a) I want to go to sleep and b) I don't want to put you into a medical-ese induced coma.

So to start, the good news is that as it currently appears my long term prognosis is quite good. The bad news is that the next 6 months to a year is going to suck. All things considered, I'll take a crappy year in return for a positive prognosis.

The Medical Details...

If you get your kicks looking at medical terms here are the details (if you don't, just try not to let your eyes glaze over too much):
  • Cancer type: invasive ductal carcinoma (about 80% of all breast cancers fall into this category)
  • Cancer grade: Grade 3, unfortunately this is the most aggressive grade of cancer
  • Cancer stage: as yet unknown (more on this later)
  • Other info: ER, PR & HER2 negative (also known as a triple negative)
  • Ki67 Rate (cell proliferation rate): 85, this is really high (scale 1-100) and means my cancer is aggressive and can grow quickly

What It All Means...

Basically I have an aggressive form of cancer but it should be very treatable. It appears that I found the cancer early and given the aggressive nature, that is, as Martha says, A Very Good Thing. I do say "appears" because all the data is not yet in. I still need to have an MRI and an ultrasound of my lymph nodes before they can determine my cancer stage. The physical exams today did not turn up any additional lumps or bumps but the imaging will help determine if there are any additional masses in my breast or if the cancer has spread to additional locations (left breast or lymph nodes). SCCA is trying to squeeze me in for an MRI and ultrasound tomorrow but if that doesn't work out it will definitely be Thursday or Friday. If they find anything odd with the imaging they'll do a needle core biopsy right away. Fingers crossed that that is unnecessary! Once this last bit of information is known the doctors will assign a stage to my cancer.

Moving Ahead...

While decisions are final until all the information is gathered, in terms of treatment, I think will be taking a slightly different approach to things. Instead of having surgery and then chemotherapy, I am opting to have pre-op chemotherapy followed by surgery. I'm also going to have genetic testing done to see if I have any of the three breast cancer mutation markers (they can currently test for) as that might also influence my approach to surgery (the how much to remove question). This will be done this fall while I'm having chemotherapy.

I was going to explain all the how's and why's and what's of my treatment tonight but I find I am fading fast... I need to prop my eyeballs open at this point. Instead, I think I'll say good night for now and get back to explaining tomorrow.

For now, suffice to say that I left my consult with a very positive impression. I feel I am in extremely good hands medically and emotionally I know I have all of you cheering me on... What more could a girl want?

If you want a bit more explanation of the gobbley-gook in the medical details section, here are a couple links:

Good night!

Monday, September 14, 2009


I'm not sure where to begin. I've rewritten these first couple sentences seven or eight times now.

They aren't getting any better with practice.

I wanted a nice lead-in, to break the news gently but words fail me and I can't.

I have breast cancer.

I was diagnosed two weeks ago after finding a lump the week prior.

And to answer your question, I'm okay. I am really doing alright. Shocked? yes. This was not something I really worried about much. Skin cancer I worried about since I am fair skinned and my grandmother had it. Breast cancer was a distant worry after a whole host of other medical conditions. After all, we have no family history of breast cancer and I am, in the breast cancer realm, fairly young. But overall, I am feeling pretty calm.

I had a little meltdown yesterday in church (hence the tweet for those of you who saw it on twitter or facebook) but I am feeling better again. I have been overwhelmed by the expressions support and love I have received, I am so grateful for the kind thoughts and prayers.

I don't yet know the extent of the cancer or what my treatment will be. I find out more information tomorrow (Tuesday) when I go in for a five hour consult with my treatment team.

I anticipate writing more regularly as I go through whatever this journey brings me... after writing a bazillion emails and messages this past week to various family and friends I appreciate the concept of a central location for information dissemination.

Fear not, my crafting friends, that this blog will turn into a medical drama... there is still plenty of knitting and sewing to be had... and, frankly, medical terminology makes me squeamish.

So, yeah. That's my news. Sorry to be a downer. But it's going to be alright. It will.

And ladies? Make sure you are checking the girls!

PS. I know I owe a follow-up post regarding the malaria net fund-raising ($1400!!!!!! Y'all are A-Mazing!) with pictures and the giveaway winners but I was waiting for Father Crispin to return so I could have the whole story. He was supposed to be back two weeks ago but ironically, Fr. Crispin contracted malaria while he was in Kenya so he only just got back. I ask you to be patient for a little while longer and I will share everything about this awesome project soon.