Coming Full Circle

One year ago today as we were driving from the Buffalo airport to my father-in-law's house in Rochester I received a phone call telling me I had breast cancer. It was shocking.

Today, happily, I am cancer-free (as far as the medical professionals can tell- nothing is ever a sure thing- but I prefer to see the glass as half full). A status that is, in it's own way, shocking. After months of treatment and surgery and everything else associated with a cancer diagnosis, I am now "normal" again, thrown back into the routine of life as if nothing of note happened in the last year. I am grateful for normal. I strive to be nothing but medically boring from this point forward... but it is odd in a way.

One month you are, as they say, battling cancer - in the "fight of your life." And then... just battling the everyday rat race.

Maybe my feeling of oddness is due to my approach to cancer. I tried to see it, not as a battle, but as something I had to do, had to get through, had to check off on the To Do List. I tried very hard (too hard my family might tell you) to keep my life as close to normal as possible despite the chemo and everything else. And so the whole thing feels a bit surreal. Did I really have cancer? Was it only 4 months ago I had surgery?

As I shepherd the kids to their activities, as I go to dance rehearsal or my knitting group, as I do all the mundane little things that make my life, well, mine, cancer is hardly even a thought in my head. Which is, as I said above, a Very Good Thing... I'd hate to have to deal with the alternative and I am thankful every day that I do not.

I am also grateful and thankful beyond what is possible to express with my own meager words for all the love and support that was given to me and my family over the past year. I may not always have responded to all the emails, cards, notes, gifts and whatnot but know that I read them over and over, I appreciated every word and kind gesture.

I had no idea my net was so vast. It is humbling to consider.

I would like to send out a very special thank you to my parents. In addition to all the other support they lent, my mom spent five weeks with us in May & June when I had surgery helping me recuperate and wrangling the kiddos. I know I wasn't an easy patient and I am so thankful you were here. And Daddy, thank you for loaning her to me for so long- I know it was hard for you to be without her for so long (I'm guessing the only other time my parents have been separated for so long was when my father served our country in Vietnam).

I know many of you wanted more blog posts over the past year and I wanted more too but it just wasn't in the cards. At first, treatment seemed boring: had chemo, kinda tired, doing ok- and I didn't want to bore you with it. Then, when things got, um, more interesting I was tired and frankly the details, while medically interesting, really would fall under the TMI category. So I didn't blog.

But here I am. One year later. And I wanted to say something. Mark the day as it were.

So, yes. I am doing very well indeed. I feel healthy and happy. Thank you for helping me get here.

In fact, I feel so good that at the end of the month, in a mere 24 days, I will be participating in the Susan G. Komen 3 Day for the Cure with two of my wonderful friends from MOPS, Wendy and Alisa. That's right, I will be walking 60 miles over three days in order to help raise money to find a cure so that someday, blog posts like this will be a thing of the past. You were all so very supportive over the past year but I am going to push it and ask you, please, to once again support me by donating today. My goal is to raise $3000 and I am 28% of the way there.

My 3 Day Walk Donation Page

Thank you again to everyone- I truly could not have gotten through the past year without you!

Better Lucky Than Good

Or maybe I should title this post "Waiting for the Other Shoe to Drop"...

Since I last wrote, I've had chemo treatment #1 and #2. And I have to say, I feel okay. Shockingly so, all things considered. Now, I by no means feel normal but it certainly could be much worse.

As I sat through my first treatment, my fabulous sister Betsy at my side, every horror story I'd ever heard or read about the side effects of chemotherapy played through my head. I wondered when It would kick in- would I feel bad right away? That night? The next day? How sick would I be? And the honest answer is not yet and not very.

Please note, I just knocked on every wood item in my sewing room.

So far I have been very, very lucky. I'm tired. My appetite is about 2/3 what it normally is (not necessarily a bad thing) and I feel nauseous from time to time but by resting, napping and using the anti-nausea medications my oncologist prescribed I have been able to get through it in an almost normal fashion.

And I am so very grateful. I know the effects of chemotherapy are cumulative, getting worse as treatment progresses so to be able to start in a place that is not-so-bad is definitely something to be thankful for, even if it does, in some monstrously perverse way, make me feel like a bit of a chemo-fraud: "Hey look at her, thinks she's a chemo a patient! Why, she hasn't thrown up once."

I'm weird, I know. But this whole cancer episode has such a feeling of unreality for me I think maybe I am looking for some physical touchstone to say, yes, this is really happening. I don't know... Or maybe I am just weird, worried I don't have the right cancer street cred.

If I do lack cancer cred, I have my wonderful oncologist to thank. He's put me on treatment protocol where I have treatments every week for twelve weeks. Most breast cancer patients have treatments every 2-3 weeks. The thinking is that with more frequent but smaller doses of the drugs, the side effects can be somewhat minimized. So on Fridays I go in and get an infusion of Adriamycin and then I take Cytoxan daily orally (pill form). When I am done with this twelve week treatment I'll do 4-6 treatments of another drug- the name escapes me right now.

You'd think that I could simply be grateful the plan seems to be working and that I feel pretty good so far. But no. I worry. I admit, I'm a worrier. I wonder if I'll wake up tomorrow and just feel horrible. I mean, I have Cancer for goodness sakes!!!!! Shouldn't I feel wretched by now? If you read more than two or three posts on almost any breast cancer forum you'd think so... and so, as I mentioned at the beginning, I am sorta-kinda waiting for the proverbial other shoe to put in an appearance.

Yes, yes, I know. I should avoid the crazy forums. But honestly, even the forums you think are going to be normal and un-alarmist and possibly even educational dissolve before your very eyes into a puddle of crazy. I've lurked on a few breast cancer boards (yes, I know! I shouldn't Google... but really, it's Todd's fault- he Googles and sends me links) and frankly, I can't hang out there much. The Drama! Seriously. I cannot take it. I think this might be my own personal oddity again.

I know many (most?) people see cancer treatment as a battle, a fight for their life and I understand the reasoning behind that- you are after all, trying to save your life. Makes perfect sense. And I think that is where the drama stems from. After all, saving your life might be thought of as a Big Deal.

Me?

I just cannot get that worked up. Treating and beating my cancer has just become another task on my To Do list. A serious task, no doubt. Clearly a bit more pressing than say, taking out the recycling, but not as urgent as feeding my rapidly-descending-into-hunger-induced-crankiness kidlets dinner (and for the record, the last 5-10 minutes before dinner when you are fervently willing the food to Just. Cook. Faster! before your children really do turn into blood sugar deprived demons is clearly the Tenth Circle of Hell that even Dante was to afraid to explore).

Some days I think, What is wrong with me? Shouldn't I be more upset? Impassioned? Pissed? (Insert appropriate entry from the thesaurus here)? But then Matt grabs a toy away from Gwen or someone spills something or Gwen yells from the bathroom that she needs to be wiped for the 400th time that day and I have to get over it and move on with my life.

So yes, this Friday is treatment #3 and I'll probably feel a little (or maybe a lot) worse next week just as I felt not quite as good this weekend after #2 as I did after #1. But that's okay because I'll be able to check off another box on the To Do List. One step closer to checking off the really big box.

Better Living Through Chemistry

Throughout our marriage, when one or the other of us has been sick and needed to take some medication, Todd and I have always made some joke or statement about "better living through chemistry". I'm not sure where the phrase originated... I have a very vague notion that is was a tagline in a commercial for some chemical conglomerate at some point... you know, one of those ads where they show you all these things you use daily and then at the end there's a tagline and the name of some company you've never heard of that, I guess, makes some component of all those products. I've never really understood the point of that type of ad but whatever- it's their advertising budget.

But reminiscing about commercials of yore is not where I was going with this post.

Sound the trumpets, I finally have a treatment plan! I've actually had it for a couple days but I've been busy trying to get my ducks in a row and so the poor blog has been neglected.

As I believe I mentioned in a previous post, I am going to be bucking the usual breast cancer treatment trend (surgery then chemo or radiation or a combination of the two) and will be having chemotherapy first followed by surgery. For those of you who like to be able to throw around fancy medical terms, this pre-operative chemo is more properly called neoadjuvent chemotherapy.

And I start on Friday. Two days from now.

Cue small freak out.

Do you want all the nitty-gritty details? Hmmmm. I wonder if I can explain all this without heading into novella territory?

I'll try- bear with me.

So, if you were paying attention (see, I told you there would be a pop quiz!) you might have noticed that I called my cancer "triple negative" in an earlier post, but I did not explain what that meant. Let me do that now because it figures prominently in my treatment.

Triple negative means that my cancer is ER, PR, and HER2 negative.

Um, yeah. That makes it clear, thanks Katie...

Here's the translation:
ER - Estrogen receptor
PR - Progesterone receptor
HER2 - Human epidural growth factor receptor

Breast cancer can be positive or negative for each of these receptors. If you have ER+ cancer, for example, estrogen will fuel the growth of the cancer. On the other hand, if you are negative for a certain hormone sensitivity your cancer is unaffected by the presence of that hormone. In recent years, great strides have been made in developing new drugs that target cancers that are positive for these hormones. Drugs exist now which essentially block the cancer cells from getting access to these hormones which encourage them to grow and reproduce. These drugs are far more targeted than older drug therapies which go after any fast growing cells (your hair, the lining of your stomach). As a result, the newer targeted therapies have improved the chemotherapy experience for patients with hormone sensitive cancer (don't get me wrong, it's still unpleasant, it's just not horribly unpleasant).

Following so far? If you are, you might realize that I am negative for all three of these little receptor types. This is fairly uncommon, in fact, only 15% of all breast cancers are triple negative.

So what does that mean? It means, that instead of a "nice" targeted drug therapy I get to have what I like to call Bazooka Chemo. Take out everything in it's path, say buh-bye to your hair, hope you like feeling nauseous chemo.

Wheeeee! Fun!

Can you tell I'm looking forward to this?

Now admittedly, I am being a bit harsh. Even though I will be having some serious toxins pumped through my body these are not the bad ol' days of chemo. There are much better coping mechanisms available to chemo patients: anti-nausea medications for example, and white blood cell boosters to help prevent or lessen fatigue.

In fact, I thought the white blood cell booster sounded pretty fabulous until the nurse explained to me that it is a DAILY INJECTION!!!! Have I mentioned my fear of needles? Yup. Daily. So I can either go to the clinic every day or I can learn to give myself the shots.

Yes. This was the part of the appointment where I wanted to run screaming from the room, bury my head under the nearest pillow, put my fingers in my ears and sing "La la lalalalalalalalalala".

I shocked myself (and, no doubt my poor mother who held my hand through many a teary near fainting experience with needles in my childhood) and learned to do it myself. It took me three or four preps to do it but I did.

Admittedly, there was a third option: have Todd give me the shots but let's be serious, love him though I do, he is a bit of a bull in a china shop. No way in Hell is he getting in the same zip code as me with a needle.

But even armed with all of these helpful things to lessen the side effects, it isn't going to be a picnic. And while I am excited to be making progress toward ridding myself of all the nasty buggers I would lying if I said I wasn't apprehensive about the chemo.

Tomorrow afternoon I go in to have my Port-o-Cath placed. I'll be under conscious sedation for the procedure so I'll be pretty loopy the rest of the day. Hopefully I'll be too fuzzy to dwell on the fact that I'll be pumped full of some nasty chemicals the next day.

So, yeah. Treatment starts in less than 48 hours... kinda' freaky. And this time I'll really pushing the boundaries of better living through chemistry because, let's be brutally honest, for me, it's living through chemistry.

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:

Betsy's Making Strides Page

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.)

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.

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.

Impatiently.

Make that IMPATIENTLY.

Or even IMPATIENTLY.

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!

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:

Seattle Cancer Care Alliance - Breast Cancer Facts
Word List via BreastCancer.org - a mini dictionary
Diagnosis Explanations via BreastCancer.org

Good night!