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Betsy Bowman
Wait ... what? I\'m not in charge of everything?

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MGH Community forum - optimism

Here's the latest from the MGH community forum blog about the language we use to talk about cancer. I've written a few posts in the past few months. This month's focus is on optimism - what is it the context of cancer care? http://whenwetalkaboutcancer.org/optimisticperspective1/ Turns out this is complicated. Enjoy the gratuitous picture of me enjoying my Christmas tree!

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Liberty!

I've said many times that my people are awesome. They are. And last weekend I got to hang out with lots of them at once. We gathered at the Liberty Hotel (in the shadow of the MGH Yawkey building) to celebrate the end of chemo. For four months I looked down on the cupola of the Liberty from my perch in Yawkey 8 and thought ... "Why don't I hang out there more often?" So to celebrate my ... Liberation ... From chemo, my awesome family and friends threw a little party there. It was pretty great. Tasty cocktails, sparkly Christmas trees, fancy people (and dogs), a memory of a great night at the liberty five years ago, and some of my favorite people all in one place. I know that this journey is not over, but it was lovely to take a moment to pause and celebrate a milestone along the way. AND ... It was the night before moms 65th birthday! So now she can officially retire to Bermuda.
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Fuzzy

One afternoon in early September I decided to take off my cute head scarf as I walked through the Public Garden downtown. It felt kind of awesome as breezes touched my fuzzy scalp - and since I can't really see when people are giving me weird looks anyway, I have no idea (nor do I care) if anyone thought my peach fuzz look was weird. But as I headed home, I realized that I felt really strange being scarf-less and I put it back on before the Red Line pulled into Central Square in Cambrdige. A few weeks later on the T in the morning I took off my winter hat since it was so much hotter inside than outside, and sure enough ran into a PHA kid who graduated about five years ago. It felt sooooo weird to just carry on regular conversation without anything on my naked head.  And to his credit - we talked like it was normal, and then I put my hat back on as i walked to school.  I realized that what felt weird wasn't my own attitude about my new look, it was concern over how I would handle the other person's reaction to it.     

I think in life it's often easier to be real and honest with strangers than with the people closest to us.  It was weird for me to realize that I felt fine walking around downtown among strangers hat-less, but couldn't quite imagine doing the same at school or around my closest people, and even felt weird once I croseed the river on the Red Line!  As time has gone on, that has started to change.   I've come to embrace the fuzzy-headed version of myself as a real part of who I am, so if someone else feels confused or uncomfortable about it, it doesn't really matter because it actually is just me.  So one of these days I'll walk around school scarf-less just to keep everyone else on their toes and to remind kids that ... it actually doesn't matter.  Other people can react how they will - and that doesn't need to affect you.  It sounds so trite.  And I've said things like that million times to kids.  And I don't think I really understood until now.
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Workout Warriors

About a month ago, I got an email from my very expensive gym which I have been visiting VERY infrequently lately.  They were launching a challenge - gather a group of women that you work with and commit to four weeks of working out together etc ..... and win prizes.  I LOVE WINNING!  So naturally I found 7 ladies from PHA and we submitted a fabulously clever application (and yes, we TOTALLY played the cancer card ....) and of COURSE they chose us to participate!  

So this is Chelsea and Katie and me at the kickoff party when our dreams began coming true.

Then we started four weeks of working out together including a weekly 6 am workout on Monday morning with a personal trainer named Kim.  Kim's lovely - and really probably had no idea what she was getting herself into.  Naturally we wear neon every time and our ceaseless witty banter at least keeps US laughing.  The first week we did a baseline fitness test which was hilarious since it was just four days after my last chemo and I really still don't have a remotely normal level of hemoglobin in my blood.  So I'm counting on making a ton of progress before out last fitness test next week!

It has been so fantastic to have a team to meet up with and workout and laugh at ourselves and each other.  It really feels good to get back to exercising and starting to feel a little more normal doing it.  Last week my oncologist said that three months from now I should aim for an hour of exercise three times a week.  SWEET - I'm doing that NOW!!!  

I hope I can be as precocious in all of my chemo recovery efforts.  

I'm not sure if we'll win since we clearly tried way too hard on our baseline fitness tests.  Should have totally thrown those.  In any case, we'll award ourselves a spirit prize either way.  
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NED

Here's the view of the 8th floor of the MGH Yawkey building from the Longfellow Bridge as I waited for the Red Line to go home (or was I going back to work ... I can't remember!) after my last day of chemo at the end of October.  I've said it a million times, it's pretty over there, and I genuinely appreciate that.  It has made the whole experience more bearable for me.  And I love this picture - the idea of the whole thing in my rear view mirror as I head back to my side of the river to move on with my day and my life.  

It feels good to be done.  And really weird at first.  I don't suddenly feel awesome.  The effects of chemo are cumulative, and some of them actually even get a little worse for a while before they get better once it's all over (neuropahty in particular.)  Hair won't start growing back for another three months.  I still feel pretty exhausted at the end of the day, and I DID finally catch the cold that's going around, so that doesn't help either.  And for these first few weeks I was walking around with this horrible doubt in the back of my mind .... what if it all didn't work?  Clear cell ovarian cancer is sometimes resistant to chemo .... what if it didn't work?  I'm an optimistic person to the core of my being, so I just kept going with the assumption that everything was fine.  That of course it worked.  That I really am on the verge of leaving it all behind me.  

Finally this past week I got the official declaration that it DID work.  That on November 11, there was "no evidence of disease" (what the cancer survivors just call being NED!)   A CT scan and a particular tumor maker in my blood all look normal and my oncologist said I'll be able to officially fire him a year from now.  I like those people a lot .... and I feel great about the idea of firing them!  

So that's awesome.  

The thing now is to decide how comfortable I and the team are with the current state of affairs, or if we want to take a few more agressive steps to try to keep this little beast from coming back.  It's tricky .... I could do nothing and never have a recurrence for the rest of my life.  Or I could go forward with some other treatments and it could come back in a year.  There are simply no gurantees in this stupid chess game.  

In the next few weeks I'll keep working with the super smart people to try to help me make some of those decisions.  None of it is urgent - like I have to decide NOW.  So I'll take my time and learn what I can and talk to lots of people and figure out what (if anything) I want to do next.  And in the meantime I'll keep rocking my stylish head scarves and work on getting back to exercising more and expecting to feel a little more normal every day.  

And I'll let you know if anything interesting happens ....
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Cozy Red Hat

Have I mentioned that I hate being cold? And now it's getting chilly out ... And my peach fuzz will not keep my head warm. So. I was walking down my stairs this morning to go out on this blustery fall day, thinking that I need to go get a cozy hat with ear flaps. In my mailbox was a bright red envelope from my old friends at Montrose. I opened it up and ... Voila! A cozy red hat with ear flaps! I'll add this to the looooooong list of thoughtful gifts, notes, meals and other surprises from so many people. My collection of Montrose School swag is getting particularly impressive!!! Thank you Jen Schiller and co!
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Musings from the infusion unit

That's just a gratuitous foliage picture from Vermont.  Has nothing to do with what I'm writing.  

Over the last four months I've spent some quality time in the infusion unit on the 8th floor of Yawkey at MGH and I've made some observations.  

1.  Cancer does not discriminate.  There are all kinds of people from all different backgrounds hanging out here.  
2.  Having said that, I would like to express my jealousy over the fact that Black women look awesome with no hair.  Fierce.  The White ladies ... not so much ....
3.  Since part of chemo treatment involves checking patients' identity before doing ANYTHING ... I hear people rattle of their birthdays a lot.  I think the oldest person I've heard was born in 1938.
4.  I am by far the youngest person I've seen in there.  What's with that?  
5.  Chemo nurses must be the most relentlessly positive and energetic people in all of health care.  I'm sure of it.  And they have tremendous technical skills to go along with their people skills.  Truly wonderful people.  It's actually hard to be in a bad mood in there.  
6.  it's interesting to watch how different families and relationships go through cancer treatment in different ways.  Some people come in there with a whole entourage and they talk nonstop.  Others sit silently together.  Lots of people watch Judge Judy in the afternoon .... who knew?  I've heard an awkward argument or two.  Others - myself included - tend to come in alone.  I know that in my own case that's not for lack of willing companions, it's just that I actually sometimes enjoy the down time alone.  I wonder sometimes what other people think when they see that.  I don't actually CARE what they think, but I kind of wonder.
7.  The view makes a difference.  It's just so pretty to look out over the river.

I'm nearing the end of this part of the journey and will be happy to walk out of Yawkey 8 in a few weeks and make smartass jokes about hopefully never seeing any of those lovely, wonderful people again.  And at the same time - it's s little strange to begin to think about what the next phase of this thing will be because it's a whole lot more nebulous.  I'm eager to get back to some kind of normal, but also deeply aware that whatever normal I get back to won't be the normal I had before.  I'll let you know when I figure out what the heck any of that means.    

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change of scenery

When I saw that Columbus Day weekend would follow one of my chemo weeks in which I get not one but TWO tasty toxic drugs .... I considered just staying home.  But the lure of the fall colors in northern Vermont visiting Amy with Chelsea was just too good an offer to pass up.  For sure there would be beautiful scenery, and a multitude of apple and pumpkin flavored food - so how could I stay home?

I don't know if this is actually true or all in my head- but I think that for ME (though I wouldn't for a second presume to say what's true for anyone else experiencing chemotherapy) that there is an element of "mind over matter" in how I feel sometimes.  Remember that line in Ferris Bueller's Day Off, "you're not dying Cameron, you just can't think of anything good to do."  Weekends have sometimes been rough for me - when I pretty much don't want to peel myself off the couch.  But even on those weekends, when I've had something awesome to do .... a Red Sox Game, a three year old's birthday party, a visit with old friends or a trip to Vermont .... I've just felt better.  I've rallied.  I've felt more energetic.  Don't get me wrong, I am NOT running any marathons these days, but I'm doing most of the things I want to do.  I'm so grateful for that.  

So .... this weekend's festivities included a lovely walk amid the orange trees, an adventurous culinary eperience making homemade pumpkin ravioli, lots of time sitting under a blanket reading on the couch, and (pictured above) a trip to the East Charlotte Vermont Tractor Parade.  Yes.  That happened.  Wow ... that's a whole sub-culture that is so far from my life I don't even know where to begin ....

It was a lovely weekend and I'm happy to have the extra day off on Monday to rest and get ready for the week.  
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Sonia hated running anyway ....

In honor of the memory of our dear friend Soinia - who hated running - I opted to WALK "Sonia's Run" today. So many lovely people gathered to remember Sonia and to raise money for her beloved Theophany School. Many ran, some walked, and lots bounced in the jumpy house. Pregnant Meg jogged while I mostly walked ... And she got lots of great comments about her baby winning his age bracket! It was a lovely morning. And now ... I am incredibly exhausted. Time for another nap.
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Lance Armstrong was right.
Oxygenated blood is awesome. It gives you wings. I'm feeling great since my little transfusion blood cocktail last week (which was NOT served with a celery stick ...). Lots of energy and I feel almost normal! This gorgeous fall morning I went for a little bike ride and watched the PHA kids play soccer - two tough losses unfortunately. As much as I mourn the end of summer - I kind if love the fall too. And the sox beat the Yankees today! Now on to the Irish tonight .....
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