Tour de NoHo

7 Jun

Bike. Camp. Was. Epic.

I got to spend the most beautiful weekend of the year thus far drinking beer, riding my bike and hanging out in Northampton, MA.  Need I even say, supreme shenanigans ensued.

First there was the delicious homebrew I got to drink in the basement of my old college science building with my favorite professor.  Then there was the delicious beer I got to drink at one of my top 5 bars (the Moan & Dove) with my favorite professor and my favorite bike camp buddy.  THEN there was the wedding my bike camp buddy and I got to crash where I met my 2nd favorite cello player (Karl Holmstrom, you’ll always be first in my heart honey bun).  Oh and that was just the first night.  After an hour of sleep (woops) I got to eat breakfast at my favorite breakfast joint in NoHo (Sylvester’s).  I may or may not have still been drunk.

shenanigans

It goes on.  And on.  And then we came back for more.  By the end of the weekend we were pretty punchy and at one point literally could not stop ourselves from laughing at just about everything.  Despite our delinquent behavior we managed to learn a ton about cycling, training, bike maintenance and riding in a pace line.  Erika was a gladiator road warrior champion, powering through some horrible cough/cold/hangover day after after.  We watched this video the first morning to get ourselves properly motivated.

Truly, the cycling was pure bliss.  Cycling makes me feel happy.  So happy and so free.  It evokes that feeling I think everyone is looking for – that feeling of being outside of yourself; focused and present and useful and challenged and part of something bigger than you are.  It’s like playing music.  And with cycling you get to be outside and get to go fast and there’s an element of play in it too.  A little of bit of catch me if you can winking over the shoulder edge that keeps things interesting.  We rode 100 miles of pure bliss.  If you’re ever in the Northampton area and looking to do some awesome group riding or get some cycling coaching or whatever, I can’t recommend the good people at Ride NoHo strongly enough.  I have a total life crush on them.

elaine is just as adorable as she looks. and aldo's eyes are normally open.

massachusetts is pretty and bike hugs are awkward

that's not alcohol. it's a Ride NoHo cocktail - orange juice and seltzer

I laughed more than I have in a long time all weekend long. Especially because my hair looks like this when I take my helmet off.

helmet hawk

Makes me kind of miss my little mini mohawk.  It was such a fleeting mohawk before ALL my hair fell out.  Perhaps I should revisit it….

On the cancer front.  Got a big CT scan coming up.  I’ll let ya know how it goes.  Fingers crossed my bloggy friends.  Fingers crossed.

Advertisements

Well, hi there!

29 May

Oh, poor bloggy.  Poor sweet bloggy.  Just wasting away in cyberspace, waiting for some sweet administrator to come along and update you.

Well, I’m here, baby.

What’s new.  Well, no.  I take that back.  Let’s not talk about what’s new just now.  Let’s talk about some old stuff.

First of all, my sexy, sexy bike.  I didn’t make the big girl leap to a carbon frame (I just didn’t have the dollars) but I did buy myself a Specialized Dolce Comp with external crankset, full 105 group, carbon inserts (zertz) and a pair of beautiful boa system shoes to match.  I love love love my new wheels.  I’ve even going to super cool kid bike camp next weekend.  It’s a 3 day clinic where they’ll teach me how to shift, descend, lean, counter-steer, ride in a group and basically not get hit by a car.  I’m really excited to learn a whole bunch of stuff/drink tons of delicious beer in the Pioneer Valley.

That said.  Cycling…it just ain’t what it used to be.  I know you’ve heard it here before, but I used to crank right on up these huge East Haddam hills.  It was an easy ride to head up Mt. Parnassus before.  You catch that? MT. Parnassus?  As is in MOUNTAIN.  And yeah, that was a standard ride.  My legs are spent after a relatively easy 26 mile loop on the flat CT shoreline these days but I’m working on it.  In fact, I’ve got myself one of them newfangled personal trainers.  Yep.  I’ve been working twice a week with a FANTASTIC trainer who is really helping me focus on my goals.  Swear to god I can literally feel the new muscle exploding when I work with her.  Our goal this week, 25 wall-balls, 25 push-ups, 25 smith squats, 25 crunches…x4.  Yay!

Ms. Patsy Cline is getting huge.  We started obedience classes and the wonderful people who run the class seem to think that she is an Australian Cattle/Rottweiler mix.  Hello! The AC was obvious, but half Rotti?  Can you say 150 pound dog?  We’ll see what happens, but my little girl is getting huger and huger by the second.  Yikes.  Hopefully she’ll still want to catch a frisbee for me.  Homegirl needs a hobby.

who, me?

penny says, "when can we bring her back to the pound?"

patsy says "whatever, penny. you love me. move over."

 

My little sister turned 20 (!!!) and my Grandpa turned 80 (!!!!)  Woah.  Check out some photographic evidence.

me & baby sis

grandpa

me + army brother

ALL the cousins

whatevs, we ALL bald

So yes, things are moving right along here.  I already feel like the summer (which hasn’t even technically started) is flying by.  I’m looking for apartments in Burlington and just know I’ll be back in med school before I know it.  Until then, I’ll spend my nights either soaking my feet, drinking red wine and watching Mad Men or painting the town red in Middletown, CT with the best friends a gal could ask for (you know who you are).

My CA-125 is down to 3…I have a CT scan in a couple of weeks…but honestly, at this point, I don’t think too much about my cancer recurring.  I’m taking care of myself, I’m living my life, I’m muddling through.  Sometimes, even in the happiest of times, I feel a little bit like I’m living with a noose around my neck, but it sure doesn’t make it chafe less to preoccupy about it.  I’m undeniably acutely aware of my circumstances, but I’m looking forward.  Looking forward with hope and grit in my heart.  Such is the human condition, no?

I PROMISE to update more frequently.  I miss you bloggy.  Things just all of a sudden got real busy around here.  That’s no excuse though. I like it here.  You’ll be reading more of me.

On that note.  I’m currently listening to this song and loving it, so enjoy…because why deny the obvious, child?

 

How to fuck cancer in 34 steps

19 Apr

1. make a guest list — invite EVERYONE

2. make sure it’s ok with your landlord

3. get a tent (that comes with a tent guy)

4. get a keg

5. lose your mind overbuying food/wine

6. decide the week before everyone arrives to paint the house, hang curtains and frame art

7. party like it’s college the night before

8. in the morning, fix the boiler…because it’s broken…and there’s no heat

9. wear a party dress and decide to go bare-headed

10. find the grill…and a propane tank…

11. hug every one of the 50+ people that comes

12. cry when your brother, who can’t come, SO thoughtfully sends you a beautiful orchid that arrives that day

13. feel so full of love at the sight of so many people you love that have come from near and far

14. admire your boyfriend’s grilling skills

15. eat and drink

16. dance with your mom

17. over-emote

18. prevent septic system from giving out

19. do not let dogs poop inside

20. dance again

21. spend a lot of time standing in the puddles under your tent which is holding up nicely against the gale force wind

22. return to dancing

23. teach me how to dougie

24. be courteous to the police officer when he arrives…he has a niece with cancer

25. hula hoop

26. dance

27. smoke inside

28. do some shouting in the kitchen

29. when you can no longer dance, go to bed, leaving your sister & co. to raid the banana cream pie leftovers

30. wake up to the tent guy

31. bagels, eggs, cream cheese, coffee

32. be so thankful for your amazing, party-elf, friends and family who really did all the work

33. appreciate your oh-so-blessed life

34. lay on the sofa

I almost certainly left some stuff out…please add/amend below.

Impromptu ER Trip

10 Apr

Did I mention I ended up in the ER a couple of weeks ago?

No?

My bad.

I blame yoga.  I’ve recently upped my game with the yoga practice and have been trying to push my edge a little bit more each time I practice.  As we’ve discussed, I’m not in the shape I used to be and SURPRISE!  I ended up with some abdominal pain.  Nothing horrible.  Just a little twingey, stitchy feeling in my side that I noticed when I moved a certain way.

Now, normal people say, “Huh.  I have some random muscle pain. I must have overdone it with the yoga. Better rest up and back off.”

People who have just finished chemotherapy for ovarian cancer say, “Oh shit, my cancer is totally back.”

Ok, maybe not ALL people who just finished chemo.  Just crazy ones like me.

This is definitely the dark side of remission.  Every twinge, every headache, every sore spot could be cancer.  It could be the cancer you didn’t even know you had in the first place creeping back!  There’s really no point to this hyper-vigilance and I don’t always feel so paranoid.  In fact, most of the time I feel very optimistic and enjoy my life.  But sometimes, there’s nothing I can do to stop this black blob of fatal certainty from glomming on to my brain.  The fear has it’s own powerful logic and it’s hard to shake.  But, as William Kennedy says “fear is a cheap emotion, however full of wisdom.  And I’ve always thought of myself as a [wo]man of expensive taste.”

I did my best to reason with myself, but I ended up fretting for about 24 hours, constantly poking myself in the side…checking that yes, it still hurts and probably exacerbating the upset muscle even more.  Eventually I convince myself that I feel a lump.  Clearly my cancer has come back.  So that’s it.  It’s decided.  Nothing left to do but have some wine and lay on the sofa.

Chris suggested I call my doctor’s office.

I resisted…what are they going to do for me anyhow?  If it’s back, it’s back.  Why call?  I’ll see them in a couple of weeks anyhow.

Chris again suggested that I just call my doctor’s office.

So, the next morning, I left a long, convoluted message for my doctor.  One of the nurse practitioners called me back and I gave her a long, convoluted explanation of why I called.  This NP was one of the clinicians I’ve never seen.  Had she known me better, known my paranoid and persistent ways, the outcome might have been different.  As it was, she strongly advised me to go to the ER because who knows?  It could be cancer, it could be something to do with my potential, phantom fistula, but I’d better get it checked out.  Oh and don’t just go to any ER, drive 1.5 hours to the ER at the hospital because they have all my scans and records already.

Oh, goody.

Chris gallantly left work to come with me and off we went.  Luckily, there’s never much of a wait at the ER at my hospital and we got in quickly.  I chatted with the nurse – who decided that my pain is from all the “fist pumping you’ve been doing while partying since you stopped chemo, right?”  Turns out, she’s really not that far off.  The very nice doctor came in and ruled out urinary/kidney stuff, didn’t think it was a GI thing, didn’t feel a lump, didn’t think it was my fistula being all weird.  Basically she told me, yeah, I think you’re fine.  Little muscle/nerve pain.  Go on home.  Relax.

My abdominal area has literally not bothered me since.

Oh, and my CA-125 is down to 4.  Yeah, that’s right, FOUR.

The Genetic Method

31 Mar

Little shout out to The Band with my title there…

Remember how I got tested to find out if my cancer was the result of a genetic mutation? Well, I got my results back and the news is good – no mutations in my BRCA1 or BRCA2 genes. The genetic counselor and I expected as much after going through my family tree (we made a pedigree med students!!). I have essentially no family history that would indicate a genetic mutation, but we’d figured we’d better do the test, just to be sure. For those who care, I had the BRACAnalysis test, including 5-site rearrangement panel, but did not have the BRACAnalysis Rearrangement Test (BART). We didn’t do the BART because it was so unlikely that I had the mutation in the first place, additional tests weren’t necessary.

A few facts about BRCA1 and BRCA2. These are tumor suppressor genes. See, there’s two ways to cause out-of-control cell proliferation; you can jam down the accelerator of cell division, or you can cut the brakes. The BRCAs are brakes and mine are still intact. A woman who inherits a harmful mutation in one of these genes is 5 times more likely to develop breast cancer than a woman without said mutation. 1.4% of women in the general population will be diagnosed with ovarian cancer in their lifetime as opposed to the 15 – 40% of women with a BRCA mutation who will be. BRCA mutation account for 5 – 10% of breast cancers and 10 – 15% of ovarian cancers in white woman in the United States. BRCA mutations are more common among certain populations, for example among people of Ashkenazi Jewish descent. There are other mutations that are sometimes responsible for breast/ovarian cancers, but the BRCA mutation are most often the culprit.

So, I’m lucky I don’t have any mutations in these genes. Things would be much more complicated had my test come back positive. Genetic testing is a slippery subject. There’s a lot of people who choose not to be tested and I can really see why. There also seems to be a burgeoning push for full genome sequencing for everyone. Think about it. Do you want to know? Do you really want to be burdened with such certain uncertainty? The increased, potentially unnecessary, medical intervention that may accompany the results of these tests? Would you tell your family if your genome revealed some sleeping demon? Should your doctor tell your family? What if you felt like a ticking time bomb for your whole life…and nothing ever happened? Our knowledge about what the results of these tests mean is changing every day. Every HOUR!

Privacy measures around genetic testing are also still evolving. Do you want your insurance company to know that you tested positive for some genetic mutation that may or may not increase your risk for some potential condition in the unknown future? Insurance companies make their money by betting that you’ll pay them more money then they’ll spend on you – if the odds are dramatically changed by the results of one of these tests should that person be required to pay more since it’s X amount more likely they’ll be effected by something? I’ll bet I can guess what the insurance companies might say. We do have the Genetic Information Nondiscrimination Act (GINA) which offers some protection. GINA “generally will prohibit discrimination in health coverage and employment on the basis of genetic information.” It also “generally prohibits health insurers or health plan administrators from requesting or requiring genetic information of an individual or the individual’s family members, or using it for decisions regarding coverage, rates, or preexisting conditions. The law also prohibits most employers from using genetic information for hiring, firing, or promotion decisions, and for any decisions regarding terms of employment.” So that sounds good. BUT. This does not apply to life insurance, disability insurance or long-term care insurance. Nor does it apply to companies with fewer than 15 employees. And lastly, GINA doesn’t “prohibit health insurers or health plan administrators from obtaining and using genetic test results in making health insurance payment determinations.” And I mean, payment is the important part of this whole arrangement, right?

So, say you want to get the test, but don’t want your insurance company involved. You decide to pay out of pocket for it. The testing I had done costs over $1000. And there is only ONE lab in the country that does it. The test, a very simple test any lab could do, has been patented by Myriad Genetic Laboratories. They are the ONLY ones who can do it. For now. This patent has been challenged and invalidated, but Myriad is currently appealing the decision.  Myriad has also done some controversial direct to consumer marketing for their genetic testing.

If my test had come back positive I would have had a few options. I could have opted to have heightened screening for breast cancer. I would have started getting frequent mammograms and routine MRIs basically now, very young. This doesn’t sound so bad, but these screening procedure do have false positives relatively often and that means more, serious, unnecessary and frightening medical interventions. Some women who have a positive BRCA test opt to have a full, prophylactic mastectomy. This is considered a more radical move, but hey, total peace of mind. I’m pretty sure that I would have opted for increased screening, I like my boobs, I’d miss ’em like hell, but it’s hard to say.

Alright. End rant. I have yet to fully make up my mind about genetic screening and testing. Clearly I chose to have the test and am glad I did, but the issue is very complicated and always changing. It’s also an issue we all will have to think about, especially any future healthcare providers. There’s lots of questions to ask ourselves about what we want the healthcare we receive and give to be about.

In other news. I’m feeling good. Stronger and stronger. My eyebrows fell ALL the way out, which always makes me think of this guy:

I remember watching Pink Floyd’s The Wall on like, VH1 Movies That Rock or something when I was a kid and the image of this dude messily shaving off his eyebrows really stuck with me. Ick. My eyebrows are now growing back, give ’em a few weeks and I think we’ll be back at capacity.

I also can’t get enough of the Born This Way video these days.

Love it. My favorite part is the zombie/skeletons.

But, I have to say, Gaga, those severe bangs always make me think of that lady from Say Yes to the Dress.

No? Is it just me?

Shameless Plug

28 Mar

I just finished my taxes (yay!) and the whole arduous process got me thinking about the ol’ dollars and cents.  Specifically, donating some of them.  My dear friend Erika:

here she is

is running the Boston Marathon to raise money for the Dana-Farber Cancer Institute.  Girl has been training in the worst winter I can remember for quite some time and is going to rock come Marathon Monday.  So.  Give her some monies!

The money goes to the Cluadia Adams Barr Program in Innovative Basic Cancer Research which supports a number of different research projects that all work towards finding new ways to kick cancer’s ass.  Nobody likes cancer.  And, it turns out that cancer is not only good at gobbling up people’s bodies, it’s also good at gobbling up research money.  The Dana is doing some good work, and hey, it’s a tax deduction, right?

Erika has been working so hard to raise money, which may be even harder then training for the actual marathon.  Sometimes asking people to hand over their money can be hard.  This is not one of those times.  I have no problem asking people to donate money to cancer research.  Cancer sucks and without research like the good folks at the Dana are doing I’d personally be shit out of luck.

Chris and I will be there in Boston when Erika runs, so I’ll try to get some awesome mile 21 agony action shots to post so you can see your dollars at work.  Any amount you can give is great.  Again, here’s the link.

Thanks, guys.

http://www.rundfmc.org/faf/donorReg/donorPledge.asp?ievent=425293&supid=294152961

Priscilla

22 Mar

Last week, my mom, sister and I went down to the city and saw:

Oh yeah.  It was fabulous.

There was some of this:

And this:

And more like this:

 

Now.  Confession.  This is so embarrassing that I didn’t even tell my sister and my mom at the time.  In the show, they sing “I Will Survive”, right?  And it’s like a huge, all cast number and everyone looks fabulous and is dancing like they mean it and it’s wonderful, ok?  You have the image.  Now, maybe it was the two glasses of Pinot Grigio at lunch or the stress from the new puppy, but at this point in the show I start to get a little choked up.  Yes, this campy rendition of a 1978 disco hit made me get all EMOTIONAL.  I guess having such a great time, with people I love so much while watching people just get down with their bad selves really made me realize, that, well, I’m going to survive and I am so excited about that.  Totally silly, but totally true.

Now, I was never REALLY dying…I never saw my life flash before my eyes and no one would ever describe me as “terminal”….but, well, I think maybe Royal Tenenbaum after his faux “pretty bad case of the cancer” said it best:

ROYAL: Richie, this illness, this closeness to death…it’s had a profound affect on me. I feel like a different person, I really do.

RICHIE: Dad, you were never dying.

ROYAL: …but I’m gonna live.

This continues to hit me at strange moments, not just during musicals about drag queens.  It happens early in the morning, late at night, while walking the dogs, while reading a good book, while sitting on the porch watching the super perigee moon rise, while walking up the steps in Grand Central Station, while cooking and talking and dancing with Chris, while laughing and gossiping with my family, and so on.  I feel a new sense of my own fragility, of life’s fragility, but in a way that’s the place where these mini bursts of celebration come from.  I’m alive!  And I could not be!  And it’s not going to last forever! Let’s enjoy!

On that note, let’s have some soul, shall we?

 

 

 

%d bloggers like this: