Starting Chemo May 2008

Ok, just watched "I am legend"... why is it every movie I watch now is about cancer in some sort of form? Looking at the movie from this end of the spectrum, I could sypathize with the victims/monsters. Hell there are days that I want to bite somebody myself for everything I have gone thru. And I look alot like them too. Hard to put on eyebrows when you can't be in the light LOL

Noelle, you were so wise to let your mom go. I had a good friend who died of AIDS on Sept 8, 1988. She hadn't been eating in weeks. I was so happy when she called me at work to say "Bring me an Italian sausage sandwich with extra green peppers tonight." But she died before I got there with the sandwich. I learned later that it is not uncommon for people to die when people who are always around leave for a bit (e.g., step out to get coffee, go to work) because they know their loved ones don't want to let them go. I just wish I had let her die and let her know that it was okay if she died instead of keeping vigil, sleeping in the bed next to hers terrified she might stop breathing. I'd go to work, and then come back.  I begged her to stay alive sometimes.

I was so young and stupid then. I think of her at the beginning of every school year. (You know what's kind of cool? Her last name was "Love." I miss her. I can still see her, and us, so clearly, you know?

Rox, we all start out with hair that has no pigment, so it looks white. It took weeks for me to get colour in my hair, but I have it now!

I can actually rub my head and touch hair, and not skin. 

 I look a bit like a hedgehog though. 

 Chemobrain can apparently be permanent for some, but for others it goes away. I use it as an excuse all the time.

I have very few memories of things that happened during chemo... if my staff says one more time " Don't you remember...?" with regards to anything that happened since mid April I scream NO!!!! My partner says I am still a lot slower at my thought patterns than I used to be. 

We will all be fine. 

 Siouxie, you asked where everyone lives. I live between Toronto and Niagara Falls in Ontario Canada. So Buffalo, Detroit, and Northern Pennsylvania are driving distance from me.

With enough notice I can fly anywhere to meet up with y'all.

I'm feeling all kinds of good energy from this thread!  And I needed that, because today was stressful: busy all day at work but got nothing done, saw oncologist, paid big car repair bill, had testy exchange with daughter, etc. etc.  (Testy exchange with dd was actually kind of funny.  She calls me on my cell just as I'm getting dropped off to pick up my car - the one with the new $600 fuel pump.  I tell her what she can have as an afternoon snack, instruct her how to prepare it - 15 years old, and she can't figure out how to reheat leftover pizza?? - then tell her I really can't talk now, good-bye.  Two minutes later the phone rings, and it's her again, asking about a sleepover.  "DIDN'T-I-TELL-YOU-I-CAN'T-TALK-NOW??" I scream at her.  Felt bad afterwards, but geez: in what universe does "I can't talk now" translate into "Please call me again in two minutes and I would LOVE to hear about your sleepover plans"??)

Roxi/Mary, can we take a shovel to your surgeon, for the white hair comment?  As Noelle said, it ALL comes in white.  I'm betting that if you weren't white before, you won't be now, either.  (That's what I'm telling myself, anyhow.) 

Eddie, hope the Bellevue strike does resolve.  (I get a daily "collective bargaining bulletin," so have read a little about it.)

Noelle, steal any or all of the poem with my blessing.  But I think you should also steal Kerry's "fecku" from the other thread.

Send-off appointment with oncologist was a non-event.  Blood counts are all good.  Picked up my bottle of tamoxifen.  (No grapefruit for the next 5 years kind of sucks.)  Made appointment to have port yanked in three weeks.  (Yippee!)

Still waiting for that first welcome sign of new eyebrow stubble . . . like the first robin in spring, sort of.

Linda

Kristy, I just checked to see where Lindale is.  You stay safe, OK?

otter 

OH!!  and on the white hair thing........shame on the Onc or the Onc nurse or whoever..doesn't it all come in colorless or "white"?  Shit on you and the horse you rode in on.  Ok...I've had a glass of wine or two...sorry.

My hair came in that colorless fuzz.  Each day, it was more fuzz...still colorless or what some would call white.  This last week, however, has been amazing.  Early this week I started to see color in my "fuzz" that made my scalp look dirty.  Each day my scalp has gotten "dirtier" (that word looks strange).  I have to look in the mirror and frankly it makes me giggle...seriously giggle.  I love it.  There is life on my scalp.  Its amazing.  YET...at the same time...more of my eyebrows are disappearing...WHAT IS UP WITH THAT?  Eddie - I don't know how you do it.  I never learned to draw my eyebrows because frankly...this is Seattle.  I didn't want to leave the house with nice eyebrows only to hit the drizzle and have my eyebrows sinking to my chin.  The picture isn't pretty.

My incoming eyelashes are distracting me...that new growth stuff...just there in my periferal (or however that is spelled).  When I finally finish my website...it won't have so much white on it.

I love you guys.  What would we have done without each other in this May group?  No matter how active or inactive you are...you just know the May Group is there for you.

Everyone have a fabulous weekend!!

Sue~ I'm in the Dayton Ohio area <waves>

Rock~ I aim to please <wink> lol

Eddie~ Onc told me that the last taxol would stunt my hair growth a bit but then it would kick back in. I have about 1/16 of clear hair going. Frankly I don't care if it comes back orange... just as long as it comes back! It hasn't started in very well center/front..... that has me worried already. I really don't want a huge bald spot there. :O( Congrats to adam! edit/addon LOVE the pic daulink! And you got your eyebrows straight, I'm proud of you. 9 times out of 10 half of my face looks pissed and the other side looks surprised.

Kristy~ congrats! I can't wait to get that full week back in. Hope you had a wonderful lunch

here goes nothing: thought yu would appreciate the humor...it was too late to pose, so I snapped this as we left with my phone.

So...who among youse has Ike hammering on your door? I watched some of the coverage last night and felt sick to my stomach.  Honest to God, I thought "Well, if it rolls out during the weekend it shouldn't mess with too many women's chemo infusions..." and I wasn't just thinking of us.  Still, what a thing for those women who are in the throes of side effects and having to relocate or bail out a basement or can't reach a doctor or . . . 

Randie -- Brilliant.  Artfully staged, too.

"You'll work it out!" -- I'm def adding that to my repertoire and I don't even have kids. Other faves "Do what you got to do!" (when someone is being long-winded about how why they can/can't do something and how tough it is) and "Good luck with that!" (when someone is seeking my approval of something they know damned well is a horrible idea).

Kristy -- I'm glad you're back and also happy that your returned is appreciated/celebrated! But listen to your body, okay? I was doing great and then the last couple days I have been LAID OUT with fatigue. 

Adrienne -- SMOOCH and a HUG for my chemo partner.  I'm right there with you.Though yesterday some eyebrows started to come in. I have some stray hairs (the white ones, of course) that are almost an inch long.  Sometimes I wonder whether I'm feeling a hot flash, or whether it's the sensation of a burst in hair growth.

Gotta go. Headed to a friend's "shack" in the catskills.

Sue, thanks for taking on the challenge of where we all live. It would be great to get-together and meet you all in person. I would travel at great lengths to meet up with you all. Okay, here's what I've read and picked up (from chemo memory. Hope it's right)

Roxi (Mary)-Milwaukee, Wisconsin

Kristy-East Texas, Texas

Ellenoire-Ontario, Canada

Eddie-Seattle, Washington 

Jen-Dayton, Ohio 

Rock-NYC, New York 

I had no clue that our hair lost the pigment and everyone's came in white. That makes me feel so much better. Thanks gals. I can't be too hard on my PS though because I have future surgeries and he's a keeper. Magic hands. 

My hubbie and I are celebrating 23 years tomorrow. So hard to believe. This has been our most difficult year yet, but we did it. Going out to celebrate tonight. You all have a wonderful weekend.

Mary 

I'm in Bremerton, Washington....just as good to say I'm from the Seattle area

Hi  gals

I'm from Nelson, bc canada

Have a great weekend ! 

I've been thinking about Rock's comment about Hurricane Ike, how she's been wondering about the breast cancer patients in the areas hit by the storm.  I'm guessing a lot of us have been having similar thoughts.  Isn't it something, how breast cancer now shapes our reactions to seemingly unrelated events?  When I hear of millions of people potentially without power for a week, I think about cancer patients with Neupogen in their refrigerators, and worry how they'll manage to keep those $300 vials cold. 

It's shaping up to be a soggy weekend here in the midwest: lots of rain, some flooding.  I drove to Ann Arbor early this morning to run another race.  As the rain poured down in sheets and I passed stalled vehicles, vehicles facing the wrong direction on the freeway, rolled-over vehicles, etc., I felt a little foolish to be driving 45 miles to run a 5k.  But if you aspire to be a hard core runner, you can't let a little rain (or $4.25 gas) deter you.  The race was partly on a paved bike path, and partly on trails.  The trail portions were great: lots of ups and downs over slippery mud.  (See, when you're hard core, mud is good.  The muddier you get, the more badass your reputation.  The ultimate is to fall face first into the mud, get up, and finish the race, preferably placing in the top 3.  But I'm not that badass.) 

I had a hard time in the last mile (it felt like someone had de-oxygenated the air), but finished about 20 seconds faster than last week's 5k (assuming the course was measured accurately, which a lot of trail races aren't).  I'll take any sign of progress I can get.

The race was a benefit for the Huron Valley chapter of Slow Food.  Everyone who participated got tickets that could be redeemed at a local festival, being held at a soggy schoolyard a few miles away, featuring locally-produced food.  (Salvadoran corn tamales . . . buckwheat crepes filled with goat cheese . . . paw paw gelato . . . yum.)   There was also a raffle, using our race numbers, and I won a pound of locally-roasted, fair trade, organic coffee.

Running and food . . . it doesn't get any better than that!  (I say that, and then I start thinking of ways it could have been even better.  The Decemberists could have been giving a free concert.  Sephora could have been handing out makeup samples.  One of my running heroes could have run me in.  Barack Obama could have handed out medals.  But it was still pretty damn good.)

Enough rambling!  Kerry, I plan to start using that "You'll work it out" line.  Frequently.  Randie, love the picture - funny and poignant at the same time.  Eddie, great shot with the gov (I dropped by your blog), and congrats to the budding thespian.  (I love that word.)  Mary, have a wonderful anniversary!!

Linda

Kerry, I stoppped runnning in Feb, and have just started back. I had no time/ energy to run during chemo( my free, good energy time was spent working, going to medical appointments...).

 Check out Chirunning.com. It is the smartest way to learn/ relearn how to run. It has saved me buckets of energy and pain ( bad knees and a bad back) The books and vids are worth their weight in gold. 

 Linda, I am excited for you that you go to race. Yay for 20seconds!  I love trail running too! 

Can I join you at that race next year? 

 more later N

Arrgh!!  I wrote a long post, then the phone rang, I hit "submit," answered the phone, talked for half an hour, then came back to find it had disappeared into cyberlimbo.

I think I started out with a shout-out to Noelle.  Noelle, if you ever find yourself heading to Detroit to visit friends and family, I hope you'll let me know.  I'd love to go for a run with you.  For that matter, I'd love to just hang out with you.  Heck, I'd love to learn how to exfoliate from you! 

(I looked up Dundas - that's where you are, right? - and discovered that it's right by Hamilton.  That's really not very far at all.)

Kerry, I've been to Tasmania!!!  I knew you were from Australia, but not where in Australia.  My grad school boyfriend took a teaching position in Sydney back in 1988(!), and I went to visit him there his first year.  We wanted to explore the country some, but couldn't agree on a destination - I said the Great Barrier Reef, he said Tasmania, so we ended up going to both.  In Tasmania, we went on a group sea kayaking expedition around the Freycinet Peninsula (did I remember how to spell that correctly?), camping along the way.  It was great.  We saw tons of wildlife - wallabies and pademelons (another word I love!) and possums (always trying to steal our food . . . one night one got under the floor of the group leader's tent, and burrowed to and fro while he tried to wallop it, like a real-world game of whack-a-mole) and all different sorts of birds.  Sigh.  I would love to go back there, if it weren't so damn far.

(Oh, and the boyfriend is still there - he has dual citizenship, is married with twin girls, and is still a great friend.)

On running: I took up running in my mid-30s, for recreation/fitness, then started to train more seriously in my 40s.  I managed to keep running all through chemo, but at a much reduced level - maybe 20 miles/week of slow jogging, with walk breaks when I was anemic or otherwise hurting.  My advice to someone who's just starting up (or restarting) is to take it S-L-O-W-L-Y.  If you can run on trails, or some other soft surface (like a dirt road), do that.  Jog at a super-easy pace, take walk breaks if you need to, and gradually try to increase the running portions until you're running the entire time.  I'd recommend focusing on time rather than distance (e.g., set out to run for 30 minutes, not 3 miles or whatever), and work on increasing your mileage (I guess, to be consistent, I should call it "timeage") before you even start thinking about speed.  As you start getting more comfortable, it's a good idea to mix up longer and shorter runs, and shoot for one easy long run (which might be 45 minutes at first, then an hour, then over an hour) a week.

As you can see, I love talking about this stuff!

Linda