Good News! (Genetic Test Results)

I just got my genetic test results and they are NEGATIVE. No mutants here! (Despite what some of you may privately think...)

What does this mean, you ask?

There are 3 kinds of risk: general population risk, familial risk and genetic risk.

A woman in the general population has a 13% chance of developing cancer in her lifetime.
A woman with genetic risk has up to an 85% chance of developing cancer in her lifetime.

Ok, you ask now, why would I care about this since I already got breast cancer?

1. My family. Myfamilymyfamilymyfamilymyfamily. This has implications for all the women in my family. I love you guys and I am so happy not to be the harbinger of doom!
2. Being "gene-positive" would put me at a higher risk for another breast cancer.
3. Being "gene-positive" is linked to higher risks for ovarian cancer. For ovarian cancer, the general population risk is 1-2%, for "gene-positives" it's anywhere from 16-60%! (Although, another fun fact for today, if you've used oral contraceptives for more than 6 years, you've reduced your ovarian cancer risk by 60%. So, let's see, 60% of 60% is 36%. Follow? I didn't think so.)

But, those of you reading closely now ask, what about the 3rd kind of risk you mentioned?

And it's true. There is a 3rd category called "familial risk." This is for folks like me (and the women in my family) who have a family history but where they can't find a gene mutation to explain it. It means that we are at a higher risk than the general population and should be careful about screening and monitoring and all that stuff, but they don't have the same sorts of scary numbers about us.

This isn't a "get out of jail free" card for me or anything, I'll still have increased risks (compared to the general population), but it is good news.

So, thanks universe!

The Most Surreal Moment So Far...

Signing the consent form on the first day of chemo acknowledging that this is a "voluntary" treatment.

Insert your own absurd analogy here.

Time to get out of the house?

Well, it's day 3 post-chemo and so far (knock wood), so good. Definitely more tired than my usual self and maybe a tad more achy, but no major complaints.

We stayed pretty close to home yesterday--our major outing was to downtown Hoboken for lunch and errands--but today we may need to venture a little further out.

1 down, 7 to go

I had my first chemo treatment yesterday. I realize it's still early for any conclusions, but I am happy to report that, so far, so good.

Since it was my first treatment, it basically took all day.

9:30am - I had a blood test done. That took 2 minutes. They test the blood cell count and other stuff (like how the liver looks). Basic stuff to make sure you're healthy enough to get chemo.

10:30am - I met with the oncologist. Who, I discovered later that day, is actually the oncologist in Cancer Vixen (which I had brought with as, I felt, appropos reading material), as is the nurse, as is the nutritionist, etc. It added a touch of whimsy to the whole thing seeing your health care providers in a comic book : )

11:30am-ish - I went to the chemo suite.

The port worked beautifully (I'm so glad I got it) and I didn't have any immediate reactions to any of the stuff they gave me--some people feel cold or burning or, if something's going wrong, serious burning and pain.

The nurse, Yvette, was truly lovely and caring.

I met the nutritionist who told me lots of stuff that's basically in line with the way the hubby and I try to eat anyway: lots of organic, lots of fruit and veggies, etc.

I met the coordinator for complementary and alternative medicines (they offer reiki, acupuncture, massage, yoga, etc.). I'm going to meet with her again next treatment to decide if I want to avail myself of any of these services.

The nurse practitioner sat with us for awhile and walked me through the take-home medicines.

By the time all this was done, the chemo was done.

Before we left, Yvette showed us how to do the Neulasta shot, which I've decided I want to do at home rather than schlepping into the city.

3:30pm - And that was it.

We drove home, went to the supermarket to get some stuff for dinner (organic salmon, organic cuke & tomatoes for salad...).

My mom's sis Nancy came to visit, then we had dinner (out on the terrace on our new table!), and then I pretty much went to bed. So, the one side effect to report so far is fatigue. Luckily, I slept great (some people have trouble sleeping because of the anti-nausea steroid they give you).

So, here I sit, cup of dandelion root tea in hand (trying to avoid caffeine) and about to go make some toast w/almond butter (nuts are good for you!) and relax on the terrace.

I fully realize I may look back on this post in a few days wistfully, but figured it was worth capturing the moment.

P.S. Some good news--apparently, the Neulasta shot which I have to do today and am dreading only goes with the AC treatments and not with the Taxol treatments, so that's 4 shots instead of 8. Yay! Same thing with some of the anti-nausea meds...

Why "Jayananda"?

One of my main sources of support through all this has been the online discussion boards of the Young Survival Coalition. (One of the few perks of all this is that in this particular arena I'm considered "young"...) Anyway, in signing up for the boards, I needed to choose a screen name and so decided to be slightly more creative than my usual abbreviation of my name. So, being a yoga fan, I decided a Sanskrit name would be both pretty-sounding and meaningful.

"Jaya" means Victory and "Ananda" means Joyful. So there you go. I plan to be joyfully victorious!

The Story So Far...

Since one of the reasons I originally started this blog was to keep those who are interested updated on my situation, I figured it was about time I got around to doing that.

The short version
I was diagnosed with breast cancer in mid-March. Treatment:
1. Surgery to take the cancer out - DONE. Had the lump removed and a bunch of my lymph nodes (1 was positive for cancer, the rest are clear).
2. Chemo to get rid of any renegade cancer cells trying to hide out somewhere in my body - I will be starting chemo this Thursday (1 dose every 2 weeks; 8 doses in total), which will be over at the end of August. (Yes, I'm going to lose my hair.)
3. Radiation to make sure the cancer doesn't come back in the original spot - After chemo, I get a month off and then do radiation for about 6 weeks, Mon-Fri, about 15 min/day.

The gory details
I was diagnosed on March 15th and had a lumpectomy and sentinel node biopsy on March 29th. When the pathology report came back it showed clear margins around the tumor (yay! no need to go back into the boob) but one positive node (boo!). So, on April 26th, I had an axillary node dissection to take out more nodes (Levels I&II). These all came back clear (yay! won't need radiation o' the armpit).

After all this surgery, I did need physical therapy to help me get back the range of motion in my arm. I've been 4 times so far, and it's been amazing how much it's helped, although I'm still not 100% yet.

Due to a variety of factors, the courses of chemo recommended are TAC or AC+T. TAC is 3 drugs administered at once, every 3 weeks, for 6 doses. AC+T is administered every 2 weeks, for 8 doses; the first 4 are AC and the last 4 are Taxol. For a number of reasons (the total amount of drugs I'll receive is lower, the regimen takes one week less to complete, I'll be dealing with the side effects of only 1 or 2 drugs at a time), my current plan is to do AC+T.

In preparation for chemo (this bit is for the folks who really want ALL the details), I had a port-o-cath (also called a medi-port) installed last Friday.

Also in preparation, 'cause I'm told I WILL lose my hair, I bought a wig last Friday.

Finally, since I have a family history of BC, I've had genetic counseling (for more info, check out FORCE). The testing is being done as we speak and I should have the results in a couple of weeks. The results will give me more information about my risk of recurrence, my risk of developing other cancers and steps I can take to mitigate those risks.

I think that pretty much covers it.

How I Learned to Hate Rituals

I went to my stepsister's college graduation this past weekend. Which caused me to think back on my college graduation. Which I was very ambivalent about going to (although I ultimately did). Which caused me to think back to the root cause of my aversion to rituals. Which is this:

When I was a sophomore in high school, the ten girls with the highest GPAs were invited to participate in the senior graduation as an "Honor Guard" (no, it's not what you're thinking). In this case, what "Honor Guard" meant was that we were instructed to go buy a fancy (read "prom") dress and then, at the ceremony, we were each entrusted with a bo-peep crook (I'm not kidding), complete with bow. It was our "honor" to lead the graduation procession across the football field and then form a double row (like they do at weddings), hooks the crooks and form an archway for the graduating seniors to proceed through. So, yes, basically we were portable decorations.

Why I went through with actually participating in this, I'm not sure. I do remember standing at the front of the line (another "honor" extending to me for being...shortest) and just before we started calling back over my shoulder to my fellow HGs, "Just remember, this is RETARDED."

Watching the ceremony from this undignified position led me, I guess, to see that it was all just "pomp and circumstance" or, to borrow another reference "sound and fury, signifying nothing." This is why when I came time for my own high school graduation, I was ambivalent about going and, as mentioned above, felt the same about my college graduation. It is also why, when I got married, I designed a ceremony that lasted 10 minutes, tops.

In the years since, I have had the opportunity to attend some really beautiful and meaningful ceremonies, and so have recaptured some small measure of my appreciation for them.

But not for college graduations. Those are just boring. (Sorry Sis! I still love ya!)

"O Days"

No, not "O" as in "zero," but "O" as in "Oh! The Oxygen Network." Not a great name, I admit, but consider it a working title for those days when I just can't stop thinking about what's going on.

Some days, remarkably, I have whole stretches of time where I'm NOT thinking about it. Sure, there are thoughts here and there, but they just sort of drift through and pass on.

Other days are O Days. On those days, I'm pretty much useless. Unable to focus on anything but thinking, reading, researching, etc., about treatments, side effects, managing side effects, recurrence risks...ad infinitum. Friday, the day I started this blog, was clearly one of those days. This past Wednesday was another. I was on at a business meeting in DC and was able to pay attention to the actual meeting for only minutes at a time. The rest my mind was in a totally other place.

But on the upside, there were 4 non-O Days between Friday and Wednesday, and there've been 3 non-O Days since then (writing about an O Day is not the same thing as having an O Day). So, cheers to non-O Days! May there be many more over the coming months!

And if anyone has a suggestion of a better name for these, let me know.

Books, books, books!

Well, sooner than I expected, I'm ready to write about something other than the big C.

One of my (and the hubby's) favorite things to do is go to bookstores. Especially used bookstores and independent bookstores, but Barnes & Noble will do in a pinch. We've squirreled out some great places in and around Woodstock, NY; Asheville, NC; Cambridge, MA; the Lower Cape; and, of course, NYC. We even managed to find a great English-language store in Paris, which should demonstrate the extent of our dedication to this endeavor.

It was at the Strand--the flagship used/independent store--that I first came upon Edith Wharton. Of course I had heard of her. But I had never read her. (No, I didn't read "Ethan Frome" in high school.) To be honest, I always thought her name sounded boring. Shallow, but true. But I took a chance and picked up "House of Mirth" on the $1 rack. And read it. And LOVED it. And then found out that Edith Wharton wrote tons of novels, short stories, and even ghost stories. The only thing better about finding a "new" author to love is finding out that they have more stuff for you to read. And in this case it's tons more stuff. Yippee! So, for the past couple of years, I've been digging into her collection, picking up books as I find them at used bookstores across the country.

Her eye for detail is amazing and she has a gift for capturing the limitations society places on people (whether they realize it or not).

My favorites are:
House of Mirth
Ethan Frome (perhaps one of the most perfect books ever written. a gripping plot, incredibly economical prose, and real depth of character)
Ghost Stories

Any other closet Edith Wharton fans out there?

And we're off..

So. I've been toying with the idea of starting a blog for awhile now. There was lots I wanted to write about: the theatre where I volunteer (ManhattanTheatreSource), the work I've been doing with meeting facilitation and creative problem solving, the joys and other stuff of new condo ownership, good wine, good food, good books...you get the idea.

But, for the moment at least, all that has been upstaged by another major goings-on in my life, which is that on March 15th I was diagnosed with breast cancer. (You'll notice that I never say I "have" breast cancer, because as far as I'm concerned, I don't have it. They went in and took it all out. I had it. And now I need to make sure it doesn't come back.)

Being treated for cancer turns out to be almost a full-time job. Before all this started I had never had surgery and basically went to the doctor once a year for my annual gyno check-up. Since I got on this roller coaster on March 2nd (my annual gyno check-up), I have had:

• 2 MRIs
• 1 PET/CT scan
• 2 mammograms
• 2 needle biopsies
• 4 sonograms
• 2 surgeries
• 2 physical therapy sessions
  
• various other doctor's visits to ensure that every week I have to take at least a couple of hours of sick leave
  

And, from what I can tell, this has all been the "easy" part. On May 24, I start chemo which, I have to say, doesn't sound like a whole heck of a lot of fun.

My hope is that this blog WILL include some of those topics I mentioned above (food, wine, theatre, etc.), but for now I have to say it will likely lean more heavily toward the latter (scans, appointments, treatment). So, the masochists among you can tune in often. Others can just check in periodically to see how I'm doing. I'll be done with chemo at the end of August, so September might be a good time to come visit if you're not into all this cancer stuff.