Last one for this round, next week rest:)

Today was treatment#3 of this round, #12  overall, since the beginning.  I'm a pro now; so funny, i get a different nurse almost every time and i always have to state my case for why i want/need a liter of fluids while I'm waiting.  It's not standard protocol, standard seems to be to hang a 250ml bag of saline and have that drip in through my port whenever there's nothing else like pre-meds or chemo or just waiting for the lab to release my meds.  But, I learned a long time ago that i am chronically dehydrated, and my Zometa treatment dehydrates me further, and chemo dries out everything (my eyes, my nose) so i always ask the nurse to hang 1 liter of saline instead.  It's always an issue.  Not their fault, they just want to follow protocol, but part of me is screaming inside, "It's just saline!!  it's probably almost free!! it helps to hydrate me and helps me feel better!! just do it!!!" ah well, held my tongue and let them go thru proper channels to get it approved, and got my fluids  woohoo!!

I saw the nurse practitioner today too, they sent my blood in to test my markers, so next week we might see another drop if the chemo is still doing  kick-ass job:) The swelling in my left ankle is down, now I'm just generally puffy which makes everyone happy cuz that's expected with taxol and steroids.

Last week I didn't post - Christmas and all:) I had chemo, Ann-Marie was my angel and even brought me a present:) she's a doll and i'm so thankful to her and all my friends who make this weekly poison a little bit fun! I ran into my friend G who was diagnosed approximately the same time as me with similar diagnosis, so we are good for each other ...she knows my journey better than most because she's on a similar path.  It's awesome to talk with her and feel the support she sends my way, and to be able to give it right back:)  It's always fun to focus on someone else...I bore myself!!

Hope everyone had a great holiday, and have a wonderful new year.  RIT knows how to make the yule tide gay; I have 3 weeks off over the holidays and it's like heaven to be off, sleeping and watching tv:), doing marathon movie days at the $2 theater with Alex- doesn't get any better:)

New round of chemo; same old same old:)

Started my new round of Taxol on Friday, feel like an old pro by now! My left foot is still swollen, a little heartburn, but nothing major.  Worst is that my eyebrows are thinning:( I can't imagine that I'll be the only person ever who could draw them on and make them look natural...but I'll probably try!!

Girls' trip to NYC leaves Tuesday; Leanne and Natty with Edie, Alex and me. A little shopping, a lot of eating and some good girl time in a fancy hotel with warm cookies.  Perfect reminder of the reason we are fighting so hard against this disease. Just wish Jill were going with us:( Miss you already, sissy!!

Coming to you LIVE, from Strong hospital:)

Yep, back again, this week for just my monthly Zometa treatment, but wishing I didn't have to be here at all. Especially since, starting next Friday, I'm back on chemo. I met with my oncologist today, and overall, my PET scan results were good. All of the "old" lesions that were identified in August were less metabolic. That, combined with my CEA and cancer antigen numbers which are very good, means the chemo is working. The PET also showed some "new" lesions, but Dr Shayne feels those probably developed between the last PET and the beginning of chemo, but will keep a close eye on my numbers to make sure the chemo continues to work.

So, more chemo, but how can I complain? It's working, and the side effects so far are minimal, so bring it:). Plus, it doesnt interfere with work or my holiday plans for NYC with my sissy and girlies. I had Will shave my head this morning- the longer grays were depressing me;) and it looks better and more uniform now, just shaved to even out to the shorter parts.

Thanks to everyone who contributed to HTI in my honor after receiving a letter or through the ROC event yesterday- the more massages for more people with cancer the better! Thanks especially for all the hugs-they're an important part of my therapy!

Last chemo! :) (well, for now!)

Friday was my final chemo treatment for this third round of taxol, so "done" for now! Ann-Marie, my faithful friend and chemo fairy was there for my dr appt and my treatment, keeping me company and keeping my spirits up...sometimes just being in the hospital is so disheartening.  It's always good to have someone there to provide a shoulder to cry on:) thanks a-m, you're a jewel. My oncologist and NP both reiterated that my numbers are down, hopefully indicating that my cancer is under control - will find out more after my PET scan on Tuesday, so fingers crossed.

The pics are of a wonderful, generous gift i received in complete surprise on Saturday, from friends and colleagues of Will's in Arkansas! Just adorable, hand made little cupcakes filled with little prezzies like candy and earrings and a pill box! So, so sweet of them to think of me:) They made them for Breast Cancer awareness month, and who's more aware than I? :))) Thank you!!!

Camp Good Days and Special Times

I had a great day with some of my favorite girlies in the world today:) First Alexandra and I met Jill, Leanne and Natalie for lunch, then we did a little shopping, and then we volunteered for my favorite charity, Camp Good Days and Special Times, accepting donations at Eastview Mall in exchange for a kazoo or two. Leanne's kids and my kids have spent a week at "cancer camp" for the past few summers, and it is. bar none, the best week of their summer every year.  Their goal is to give the kids a week free of thinking about cancer, while at the same time providing a safe place to talk about their experiences if they need it.  They've made great friends and pranked them, too! Plus it gives Will and I a kid-free week, so we can escape just the 2 of us to Cape Cod, or the Adirondacks or wherever.  We are ever grateful to this wonderful organization, so a couple hours hawking kazoos? You bet! Look for the table every weekend til Christmas outside of JCPenney.

My week off chemo last week was fabulous, went to Florida for the holiday, now back to work and school tomorrow, back to chemo this Friday for my last treatment. Woohoo!!:)

Chemo #8, Cycle 3

Almost done! :) Just one more treatment to go in this, my hopefully last, round.  The plan is to take next week off for Thanksgiving (I hope cancer respects our time out for a holiday!), then back Dec 2 for the final treatment in this cycle and then on to the PET scan to see how I'm doing.

My chemo buddies this week were my mom and Mindy. Thanks for keeping me company!!  Ann Marie is all signed up for my final treatment, the final fairy:) I'm looking forward to the snacks already!!

My numbers at least look good, my Cancer antigen has now gone from (high of 1233 pre chemo) then 513 and now down to 126! And my CEA is down from (high of 73 before chemo) then 30 and now down to 10.1 :) woohooo! Both of those numbers had been climbing steadily since February of 2011, and are now back to early 2011 lows.  Makes me very happy - i hope the PET scan bears out my optimism and I'll be saying an extra special prayer of thanks for medicine and chemotherapy this thanksgiving.

I've been thinking a lot lately about statistics...I am one lucky girl when you look at the numbers.  Some stats say that the 5 year survival rate for stage IV initial diagnosis is 5%.  5 percent.  And I'm at year 4 now, not planning on going anywhere anytime soon!! Happy Thanksgiving everyone, I'll be counting my blessings.

Chemo #7, Cycle 3

Friday was my most recent chemo treatment, and I also had my regular infusion of Zometa and a painful shot of Lupron just for fun:) Plus, because my leg is still hurting, I had an X-ray with negative results :) and because my left foot is grotesquely swollen (no pic included, i decided i couldn't offend you that much!) I had a doppler ultrasound of my leg to make sure no blood clots, also, thankfully, negative.  Apparently, lots of people swell up as a reaction to chemo, plus the lovely steroids, and I've been lucky enough to avoid this side effect til now.  Leanne thinks i should get an echocardiogram just to make sure my heart hasn't been damaged by the chemo, which could also cause the swelling I'm experiencing...I'm hoping to wake up tomorrow morning and have it resolved:) This morning, I was finally able to try on my new boots to make sure they fit before it swelled up again, which made me very happy!!

ShellyB was my chemo fairy this week, and she and Will kept me company for the very long day we spent at Strong.  She brought me pumpkin seeds and chocolate dusted almonds - she knows the way to my heart:) She also knows the way to my funny bone - no one makes Will or me laugh like she does:) Love you!! XOXO

Human Touch Intitiative Fundraiser

Me and the boy:)

HTI playing cards and drinking weird beer to raise $$

Last Friday, Will and I went to a fundraiser for HTI, a fantastic organization that provides free and low cost massage therapy for cancer patients - how cool is that?! I've been the grateful recipient of these services, and I've just become more involved by volunteering and fundraising as well.  Great group of people, and it feels good to be able to help fund other people's massage as well.  Our friend Cheryl even stepped it up a notch by buying me a gift certificate for a massage; part of the $$ went to me and my achin' bones, and part of it went to fund someone else in need of relief, all for the regular price of a massage.  Thanks, Cheryl!! Awesome:) If you know anyone with cancer who might benefit from massage, please direct them to www.humantouchinitiative.org.

Angels

Angels:)

Do I look like Valerie Bertinelli?!

Hats just weren't enough for Gillies! So, we decided to join her craziness for core team this week. Bald is beautiful.  Wigs are sweaty and itchy. Mine was off before the meeting started, but Bambi (Gillies) and Col stuck it out for the whole hour. My heroes:) XOXO

Chemo free Friday:)

:)

So, my gorgeous friends (above) took me out for a movie and dinner last night to celebrate my week off chemo, and it was a wild and crazy time! Gillies went all out with her party city blonde wig find, and with Kathy, Colleen and I, went to see "Anonymous" which was confusing, and then to Benucci's for fabulous chatting and food.  Thanks for the distraction, my friends,  I had a marvelous time!! xoxo

Chemo #6 - last of cycle 2

...and i feel good:) Ann Marie was my faithful chemo buddy again this last Friday, and since Will was out of town it was especially nice to be picked up and valet'ed around:) We even went to dd for coffee, but just for me cuz she's all healthy and whatnot ;) Then, the nurse noticed my heart rate was high, and we wondered if it was the caffeine...couldn't be:)

I'm hoping that tomorrow I'll feel well, and it won't be a repeat of last Monday when I had to leave work in the afternoon cuz i was so nauseated.  I'm bringing extra meds just in case to work tmw.

This week is my week off of chemo, and I can't wait. I have a massage scheduled for Friday morning, and  a little plan with friends to celebrate the week off.  :) Hope it's an uneventful and stress free week for everyone!

let the millinery show begin...

Wow! Thanks to our baby sister suzi, I am the proud owner of 12 new hats!! Here's a little selection - i think it's amazing how much a hat can change my face!! I had to delete a couple because i looked old or tired- wouldn't want to disappoint my public!!

aww...me and the kiddos

Thank you so much, Suzi! You *are* the fashionista of the family, and I love the selection you chose!! They make me feel sassy:) and i can't wait to wear them!

History girls represent!

I must sound like a broken record, but again, or still, I'm floored by the people willing to show their support for me and my journey, in addition to my regular support system.  Above is a pic of Gillies in her do-rag, who is a constant, fearless support for me:) and me with our history prof Corinna.  Corinna has consistently wanted to be a part of the do-rag club, especially once we explained the reason behind our headgear:)  Today in class she wore her do-rag to teach in, and after asking my blessing, explained to the class that I have been going thru chemo on Fridays and still coming to work every Monday, providing services for the class, and showing her appreciation. Gillies and I were both touched by her sensitivity and perception of the interpreter being there for the whole class (a concept often missed), as well as her caring way of making me feel welcome and supported.  She rocks! She's smart, sweet and compassionate...who could ask for more?!  Of course this led to a student of ours sharing her story about her family's battle with cancer...seems like it touches everyone. Definitely a warm, snuggly moment:)

I'm feeling better than Monday, no more barfing which is always good:) and gearing up emotionally/ mentally for treatment #6 on Friday.  My chemo fairy Ann Marie is driving me and keeping me company (she of the good snacks;)), and we along with my sister Jill are planning to attend Grand Rounds afterward as their topic this week is Cancer Pain Management, New Ideas er sumpin similar - sign me up!

My daughter Edie posted a little message to me as her status on Facebook about being strong and keeping up the fight:) She's a sweetheart, that girly of mine.  My mom came over last night and restocked my earring supply;) Something about being bald makes me feel like I need to wear makeup and earrings, all that hair fixing energy has to go somewhere! So, Mom gave me a TON of earrings, the dangly kind, just perfect for my little head! Plus I ordered several hats that just arrived so I'm all kitted out, ready to face the chill:) with all my supporters around me!

Waaaaaaah i take it back!

I should have known i was tempting the gods with my "easy peasy" post. I woke up this am with a little headache and alot of nausea. After facing down a monster on call that had me limping all over campus, i took a wee nap in the business lounge;) then tried to make it thru my 10 o'clock...no dice except Gillies saved me. Thanks pal. Went home at lunch and tried to sleep it off, and am at least functional now. Sheesh.
Gillies and i presented our history prof with her very own pink do-rag today, and she ran after me to chat and thank us:) she plans to wear it wednesday and asked if she could share the reason for the 3 of us wearing cute little caps:) i said sure, important for the kiddos to see a little pinkification and know that breast cancer effects so many.
Am flaked out on couch now and hoping not to have to move til bedtime:)

Taxol treatment #5 easy peasy ;)

No chemo buddy this week! It's all good, tho, it was a really quick couple hours and Leanne came to have  lunch with me at the end:) I also was able to catch up a little bit with Robyn by phone which was awesome- she was my virtual chemo fairy!
I was a little nauseated last night, but nothing major, and feel good today, so far so good! I was telling Robyn that i'm overwhelmed - in a good way!- by the support from my teammates at work, the hugs and kisses and offers of support make me feel so blessed every single day.  Thank you all so much! I also got to spend a fantastic afternoon with Chel after her surgery on Friday, who always makes me feel loved and supported. If all it took to cure this thing was support, I'd have been healed long ago! Sometimes I wonder how people who don't have the loving family and friends I do get thru this...treatment, dr appointments, surgeries, recovering, trying to maintain at home and work, etc etc etc...I could never ever do it without my boy and my sisters, and all y'all  I'm grateful every day! :) Keep those good vibes coming!!! xoxoxo

More good news:)

The other # that "measures" the cancer in my system came back and went from a scary 1200 to a less scary 513:) amazing that this treatment seems to be really bringing the cancer under control.  Hopefully will keep working to a level where my docs feel that I can go back on the oral med and that will be enough to maintain and treat like we've been doing for the past 4 years. Not to jump ahead, smile...still lots more chemo to go.
My hair hurts today, each little strand, and I'm getting bald spots where my hats are rubbing the hair away. Poor little strands trying so valiantly to hang on, but to no avail! Will gave me a closer crew cut in hopes that will help, cuz all the little hairs falling out were itchy too...sheesh. I had 5 minutes of nausea today while interpreting - thanks for having my back Carolyn:) but otherwise, I feel good.
Fun stuff: my amazingly supportive friends, Miriam and Gillies in their do-rags:) Solidarity!! xoxox

Woohoo!

Just got some of my blood work back from last Friday, and my cancer CEA value has improved! I think that means the chemo thing is working! These numbers aren't reliable for everyone, but for me, historically, they've been an accurate reflection of my cancer status. There's another number the docs watch called the cancer antigen, but those results aren't back yet. Both of these numbers being elevated over the summer was my first indication that my meds had stopped working and then that was verified by PET scans. Anyway, happy news, my numbers are down, and that makes all the chemo totally worth it! All those good vibes you've been sending are working!!

Chemo #4 Treatment today

mmm, gotta love Wegmans and their pink ribbon cookies! Thanks Ann Marie and Maria!!!

...and I'm feeling fine:) amazing - I'm all hopped up on steroids, pepcid, benadryl, taxol, zometa and a lovely liter of saline - and i feel fine! My friend Anne came to sit with me today and be my chemo fairy and I slept thru the whole thing! I woke to find her cute little face smiling at me - so sweet of her to come and be with me.  She also gave me some tips to help with the pain in my thigh since cavorting on the beach last weekend;) (no jill, i didn't really cavort, but you knew that!) She knows about muscles, my Anne, so i trust her advice and will try to figure out my trigger points and release the muscle so i can walk normally again.  Being bald is one thing, bald plus crippled is kinda more than i can handle to be honest.  Then, my other chemo fairy Ann Marie and her daughter Maria brought us an amazing dinner tonight, my favorite chicken french and mashed potatoes and green beans, plus fresh cider and apple crisp with ice cream and whip cream for dessert. Delicious. Food plus talking with my friends= happy girl me:) Thank you all for making my chemo day more bearable.  Thanks also to my friends Gayle and Carolyn for letting me leave work early (even with the big boss man there!:)) to go to treatment...i was home and finished by 5, and that was such a blessing. You're all the bestest support system i could ask for!! xoxox

Success:)

Gillies in her do-rag!!
Here I was so worried about having to answer questions coming to work bald! I guess I'm scarier than I realized, because not one of my students asked me about it! One student asked if I donated my hair and I said yes, and that was it! I've now seen all of my students so feel much more comfortable and confident about coming to work now.

One of my professors asked me very sweetly and when I said "chemo", he simply said "honey!" which of course brought tears to my eyes. I was able to keep it together thank goodness, since I was sitting in front of 100 people at the time.
Thank you to so many of my colleagues for the hugs I've gotten over the past 2 days! I can't think of any better way to express your support:)
Bring on chemo treatment #4 this Friday!

Bald is beautiful!

safety on the plane!

Col, Kat and me chillin' in FL

Thanks everyone. My week off of chemo has been restorative mentally, emotionally, and physically. We've been in FL visiting kathryn and ian and they have spoiled us rotten! All the positive feedback has made me brave!:) I feel totally comfortable with no hat, not self conscious at all, and looking forward to shopping for cute winter hats:) I especially like the cloche style, almost a 1920s style i think...adorable. And Col has agreed to teach me to crochet my own hats, plus etsy has some...:) *evil giggle* My dad and Mitch also shaved their heads in solidarity...the support I have received has been phenomenal. Thanks everyone! Xoxoxo

Will's Experience

http://www.youtube.com/watch?v=DaxmCH7OXRs
Click above to see my husband Will's new vlog on being a husband/ support person for me and our journey with breast cancer.

Baldylocks:)

Before:)

and after!

What do you think?! My sisters, mom, kids, husband and fantastic friends were all with me this afternoon for the big shave:) It was lots of fun with just a couple moments of trepidation...but i love it! Jill and Will both shaved theirs, and Leanne has an amazing sassy new 'do too.  I couldn't have done it without them!!

I'm bringin' sexy back...

Alrighty, I guess it's time to face the facts...gonna have my head shaved Thursday night, with my sister Jill and Will going bald right next to me. My sister Leanne is cutting hers short in support and Colleen will be there to memorialize the event and hold my hand:) Too much of my hair is falling out to deny it any longer, and I really want to be able to donate it to the Locks of Love program, so I'm as ready as I'll ever be! I am most nervous about going to work the first couple days after I'm bald; it's such a public admission of my very private fight, and I know it will be hard for me to answer people's (understandable) questions. Colleen and I thought of several rude things to say, but I'll try and behave;) Shaving my head on Thursday means I'll have the weekend to get used to it at least. Plus I'll be in FL, so it's all good. Fingers crossed that I'm one of those inexplicably sexy bald women:)

Breast cancer awareness pins

ginger daughter

Here are pics of the little pins i bought thru the etsy website from artsinhand. The woman who makes them donates 70% of the cost to Canadian Breast Cancer Foundation - pretty awesome and so cute.  I'm on the fence about Breast Cancer Awareness month coming up in October...wish it weren't necessary, wonder how many companies just do it to profit off a vulnerable population, but i always come back to the idea that if it encourages one person to ask questions about her health, or get a mammogram, or let me wear cute pins, it's all good:)

ginger figurine

Chemo #3 Treatment today

I'm home from chemo and feeling fine, although I've taken some pepcid and already suggested going to bed soon and it's only 7pm;)

My friend AnnMarie was my chemo fairy today:) She picked me up and drove me, sat with me while i got my treatment for 4 hours, and perhaps best of all she brought snacks!!! She is such a blessing to me, thank you AM! I might actually look forward to chemo if it means i get to have time to catch up with my friends!!

I'm still getting all the pre-meds before the taxol, including the steroid, although it's effecting my sleep and i think causing the headaches.  But, I talked to my pain management angel Darlene today too, she approved me increasing my headache prevention meds, so here's hoping no headache tomorrow and the rest of the week - thanks for the nudge to do that sissy.

Still no baldylocks news:) my hair is definitely thinning, but i don't think it's noticeable yet, so am holding back on making a drastic bald making appointment.  Will let you know if it's time to break out the do-rags:)

Hair loss inspiration:)

         There once was a woman who woke up one morning, looked in the mirror, and she noticed she had only three hairs on her head. “Well,” she said. “I think I’ll braid my hair today.” So she did, and she had a wonderful day.
The next day she woke up, looked in the mirror, and she saw that she had only two hairs on her head. “H-M-M,” she said. “I think I’ll part my hair down the middle today.” So she did, and she had a grand day.
The next day, she woke up, looked in the mirror, and she noticed that she had only one hair on her head. “Well,” she said. “Today I’m going to wear my hair in a pony tail.” So she did, and she had a fun, fun day.
The next day, she woke up, looked in the mirror, and she noticed that there wasn’t a single hair on her head. “Hooray!” she exclaimed. “I don’t have to fix my hair today!”
Attitude is everything.

Baldylocks?

So, this morning I was combing through my long lovely locks with my hand and lo and behold, lots of hair in my hand. I swear I was mentally prepared but I was still frozen by it. Plus it's a little creepy! I can actually hear the strands pulling loose from my head! Spooky. How come no one warned me about that?! I've already bought some little do rag caps, thinking I'd just donate them when I was one of the 4% who didn't lose their hair on taxol. See? Prepared and yet...:) I had a hard time tearing myself away from the mirror this morning, gazing at my curls (sorry boss!;)) maybe it's just thinning?

Side effect?

The weird thing is, i think every little thing is a possible side effect (or more cancer.) Yesterday my leg bones hurt, then last night kept hurting, including my hips and knees. So, i researched the webs of course and found that it's a fairly common side effect of the taxol. Yay. It's funny cuz so many of the people who had taxol effects said the same thing: my dr says it's very rare, but...i think drs just like to say that, makes us feel special:) anyway, am feeling better this morning and am saying prayers of thanks for my pain meds;)

Chemo treatment #2, Taxol

So, because the oral medicines I was on (first Femara, then Aromasin) weren't keeping the cancer under control, I started my first ever chemo last friday, then got my second dose just this past friday. My oncologist said that Taxol is one of the gentler, better tolerated chemo agents, and so far that's been true.  Some of the experiences I've read online with Taxol haven't been so positive, and because the effects are cumulative, who knows what the next treatment will bring, but I've only been tired. Strangely, I'm not sleeping deeply, i think because of the steroids they dose me with before the chemo, so I'm tired but not sleepy which is an odd place to be.
One side effect that seems fairly common according to the literature is hair loss around the 3rd treatment, so I'm mentally preparing myself for that:) I've got lots of support, especially my sissies and Will! who have pledged to either go short or bald with me if it happens, so I'll keep you posted!

hi!

Hi my family and friends!
This feels very strange, talking to myself, and I know it's taken me 4 years to finally give in to the blogging thing:)  This seems like a good time to start using this technology to keep you up to date on what's happening with my health and this way you can all send me positive vibes and messages...that's my real goal:)