I had a Mohawak briefly last week .... then the boys shaved it off!

about to start shaving my head... kids have razor ready to go!

Connor and Brady switch off with the shaver

Mom has a Mohawk too- dear god- the kids look afraid!

I finally loaded my mohawk pictures on to the computer, and they are too bizarre NOT to share.  As you can see Brady still has that temporary mohawk from wacky hair day in February.... I think it will disappear soon..... On the cancer front, I had my 3rd chemo treatment today... long day but got good news that my cancer is shrinking more quickly than anticipated.... 3 more chemos to go.  Thanks for joining me today Annie Wick- you made the time fly by.  I am told to anticipate the masectomy in late July/early August.   All in all a good day, but 'chemo brain' is in full effect... I felt like I was in la la land at the school open house tonight! More to come on chemo brain another time...

and FUN NEWS - my sister's baby is due tomorrow- now if that little one is on time Friday could be a very fun Friday!

Good night :0 )

Duck, Duck, Goose

...so while I was washing my wig today, my 4 year old daughter, Maggie, was in the next room playing duck duck goose with the two manican heads I use to hold my Indonesian locks.....

So I was hypnotized yesterday....

for this first time EVER!  it was very cool....I didn't think it would 'work' but it sort of did.  He made me take off my head scarf and show my bald head to everyone- just kidding!  that would be weird!  It did take me a while to stop questionining it, and to turn off that little voice that kept asking me if I was really thinking it would work. 

The session I went to was at the Wellness house in Hinsdale- it's a cancer support center that offers support groups, exercise, education, stress management, and similar.  A very cool place- the house was donated and it's AMAZING!  It was a group session with 25 people, all wearing headphones during the hypnosis part, and it was pretty crazy how relaxing and unique this experience was.  A lot of the people there go to this group session regularly and some see this doctor 1:1 as well. 

here is the description of the session from the Wellness House...

Wellness Through Deep Hypnosis

Dr. Scot Giles, a renowned hypnotherapist, guides the participants through a self-hypnosis experience developed to help release pain and facilitate healing. The group gathers in the Great Room and sharing of ones cancer journey is encouraged. Following the introductions the participants utilize headphones provided by Dr. Giles in order to benefit from a one on one hypnosis experience which is channeled through each headphone as Dr. Giles speaks into a recording system.

and then of course my description and take on the experience........ 

Dr Giles explained that what most people think of when they hear medical hypnosis is for psycotherapy, however that is not what he focuses on in his practice. Instead he focuses on hypnosis to alleviate physical pain and symptoms associated with conditions patients are dealing with.  He used the example of the case of multiple personalities to explain how this works. There  have been many studies on patients that have mulitiple personalities, and often times the different personalities have different physical issues.  so one man may be healthy as one of his personalities, but may have a liver issue in another personality.  In this case the doctors running the study would test liver function when he was in his different personalities, and had evidence that the liver functioned differently when depending on who he was that day.  The subconscience of these different personalities was actually able to impact the physical reality in this person's body.  The point being that your mental state and attitiude can influence how your body responds to different conditions you have.  For cancer patients this is huge. There are tons of studies that attitude makes all the difference in treatment, so I am willing to give this a try... and am hoping my subconscious is as optimistic about my full recovery as I am  (yep...now I sound NUTS!!!!)

As it turns out, there was an article in the NY Times on this last Friday if you are interested (and I think it explains it better than I ever could...

http://www.nytimes.com/2011/04/16/health/16patient.html

It was a pretty cool experience.... and while I can't say for sure I was 'hypnotized', I can say I was in a very deep state of relaxation and was arguing with mysefl in my head as he was counting from 1 to 10 to bring us out of it, as I didn't want to come out of it but had to ... very bizzare...very cool.... I am going again next month to do it again!  I'll let you know how this all plays out....

Anyone know where I can get a COIF?

OK... so in the midst of all my cancer fun, I am feeling like making a fashion statement- but I need your help!  where can I get an medieval coif?  Yes, you read that right. go ahead and check it out on wikipedia
http://en.wikipedia.org/wiki/Coif and here is just one photo sampling (not of the coif that I want, but a coif nonetheless (I am technically challenged so skip the insert- go to link on wikipedia and see the little red coif on the right hand column)

Not that little edward VI is not a cutie pie, but if you scroll down you'll see some WILD COIFS!  Apparently this was a style back in the day, there are links even to '1500 to 1600 in fashion' - Really?!?!- when/if you go out there you'll find some really cool coifs- all the ladies were wearing them- including Anne Boleyn as you'll see...

My lovely friend Beth S. emailed me today regarding having to see my new wig, or coif, as she put it... that is what inspired my research and my soon to be fashion forward frolic this morning... or fashion backward since it's from the 1500's... hey all styles (good and bad) need to resurface at some point!

yours truly,
the bald eagle

Chemo Sucks & Other things of late

So... it's day 6 after chemo - round 2 turns out to be very similar to round 1, except less nausea!  I credit that to my lovely acupuncturist at Northwestern- thank you Wendy!   I took notes on how I felt both rounds, and my chemo seems to go like this- I feel fine on chemo day- I might even say I have fun while there- the chemo suites are nice, I get to read, have a fun lunch, watch movies- it really isn't bad.  treatment day plus 1 is fine too- that was last Friday. turns out it was Brady's very FIRST EVER hockey game so he wanted me to go and I wanted to go- I was a little tired but nothing crazy, so I donned my lovely wig and went- it was awesome!  Seeing him go from learning to skate, to picking up some puck handling skills, to actually switching in and out of the game in his line (I think that is what it's called?! this is all new to me!  Pitbulls in lipstick here I come! SMOOCH!)  It was awesome to see him out there doin his thing, and they won! 

So then the fun continues- we had purchased tickets to a district 58 fundraiser,

Another round of chemo, no hair, new wig - lots happening

CHEMO DAY:   So yesterday (April 7th) I had my second round of chemotherapy.  My friend Julie Thompson made the trek down to Northwestern for the day (THANK YOU JULIE).  We had blood work, a visit to the chemo  oncologist and then the chemo itself.  Round 2 was a few hours shorter than round 1 so that was GREAT!  We were on the road home by 3pm ish!  Door to door, round trip was only about 8 hours so better than I had warned my chemo buddy about. The chemo day itself if fairly painless if you don't mind the needles. And Northwestern is very progressive these days, and on Thursdays they have a wandering acupuncture lady. I spent about a half hour with Wendy, as she put i needles to prevent expected nausea, dryness and sinus issues that I experienced after the first round; and she did some acupuncture needles to reduce anxiety and help me sleep. I have done acupuncture for my back many times before, and I love it, and on chemo days it's all FREE!  Huge Bonus!  Then we had a nice lunch and then watched Twilight while we waited for the chemo to finish.   My oncologist had great news as well- by the time I met the oncologist 2 weeks ago my mass had grown to 10x9 cm; after only one round of chemo my mass is roughly 7x5 and has harder to define borders.  So it went from 90 sq cm to only 35 sq cm in 3 weeks- so the CHEMO is working, and working WELL!  By the time I have my mastectomy it may not even appear that I have cancer, which will be ideal for them to do it well and get safe margins. I don't have exact dates on surgery, but last chemo is June 30th, and so they said to expect my surgery sometime in late July or early August. That pushes radiation up to Sept/half Oct, so I'll be getting my break around late October, perfect timing for Halloween and the holiday season. I'll then start reconstruction in February-ish. 

Post chemo:  The next few days I am expecting to be recovering mostly at home, as the drugs work their way through my system.  The symptoms I had in round 1 lasted about a week, and some days weren't that bad. By day 8 or 9 following the first round I felt great and went to the Poi Dog concert at the local theater and bowled the following night.  So I am hoping round 2 is similar, where i am down a week and then have two good weeks before we roll again with it.

BYE BYE HAIR:   Last Friday on April 1st I went to pick up my special order wig, given I am cranially challenged. Many of you reading this probably have a head circumference around 21 inches or so (aside from my siblings and cousins of course - ha ha )... Mine came in slightly larger than 23 (and my mom said her and my dad have heads over 24 so I guess mine is small, relatively, kind of like how i am the shortest one in my family of 6 despite coming in at 5'10 1/2"); so none of the wigs in the catalog fit me. I always knew I had a big noggin, so not a huge surprise. So I was forced to splurge on a custom made, real hair, large cap wig, and boy do I love it.  My appointment last Friday started rough, as I was worried about getting my buzz cut.  She cut it super short but didnt' shave it.  THEN she pulled out my wig, and I LOVE IT!  It is the antithesis of my normal wild hair... my new hair comes from an Indonesian lady, it's long, straight, silky, brown and has subtle red highlights. I was originally planning to have it cut to shoulder length but after seeing it I couldn't do it. I can go back to have it restyled and cut later if I change my mind, but for now you might notice me running around town with my long hair and glasses, hiding out incognito.  I had coffee outside Starbucks last Saturday, donning the wig and big glasses, and I had some folks I know walk right by me- it was kind of fun to be undercover. 

My scalp was  little sore all week from the hair coming out, but is feeling better now, so I plan to wear it more often (which is a huge relief to the kids as they haven't fully bought into my collection of pirate head wraps yet).  My friend Nadine has been down this road before and gave me her half wig, yep the u-turn (aka cul de sac) you may have seen or heard of, where I have the bottom half of my hair and wear a hat or scarf with it- another cute style- also in straight silky hair, so another fun one to wear.

It was a funny day getting my head shaved and my new wig. I was cross when I arrived at the wig studio to meet my mom. The appointment started late, it was rainy, not a great start. But the stylist there was a ton of fun and it ended up being a great day.  I ABSOLUTELY love my wig- it's so fun to have something so opposite of your norm.  I would love wigs to come into style again so I can just build up the collection and go this easy route. maybe I'll just have my own fashion and become my own wig lady - ha ha ha.  And I think I look pretty good with shorter hair- who would've thunk it! -so now I think I may try some shorter hair do's once my hair starts coming back. 

I will post some photos off to the right of my day at the wig salon and also my first few outing with my new locks. 

BALD DOME:  My hair is now TOTALLY GONE!  Last night we shaved off the last of the short buzz I had gotten the week before. The kids and Brian shaved me down to the scalp, so I am now OFFICIALLY BALD.  Kind of a wild look! I wouldn't call it a good look, but it made me think of several Halloween costumes for the coming fall so this might be a big Oct 31 for me this year.  I could paint my body a  slimy shade of green and go as an alien with my bald head :)  If you have other bald head ideas don't be shy... pass them along! 

MY SILVER LININGS from this past week or so....  
WIGS ROCK!!! 
Chemo 2 was shorter and easier than Chemo 1; lets hope this is a trend*
Free acupuncture!
Fun day hanging out with my friend, without kid interruptions, watching movies on a Thursday afternoon!
The community I live in is AMAZING- I cannot thank all my friends and neighbors for their generosity with meals, groceries, carpool, donations to the Y-ME race, unexpected breakfasts, gifts, cards, magazines- you spoil me- and I THANK YOU THANK YOU THANK YOU- these unexpected treats make each day brighter! 


GAME ON:  The game is in full swing- I think I am kicking the cancer's ass at this point!  I don't have the exact score but I am planning for it to be a complete shut out in the end.
Thank you to everyone who has been here for me!
Love,
Mickie

TURBAN CHIC! you read it here first....

And I quote:  "A mockery is being made of all the time and money that women spend on their hair. If you want to keep up with the fashion elite, ladies, hide those locks and hide them well. May we suggest throwing on a head wrap that looks like your after-shower towel, only a little prettier?
This spring, high-end designers like Prada, Marc Jacobs and Ralph Lauren, as well as chain stores like H&M, are offering turbans for women.  Oh, and by the way, start saving. The fancy ones cost $700."

http://www.foxnews.com/story/0,2933,250413,00.html

and if you despise fox news, check this one out:
http://www.stylelist.com/2006/09/02/j-los-controversial-turban/

Or perhaps you've already seen her in your latest Style magazine ... have a great day and get your turban on!

Let's hit the city & make a difference on Sunday, May 8th! Y-ME Race at Your Pace for Breast Cancer!

I hope you can join me for a fun morning in the city on May 8th.  If you've yet to take part in a fundraising race or walk, then you should try it. In addition to the swarms of people taking part, there is always food, entertainment, amazing lake Michigan views and such an incredible amount of energy from the participants and the volunteers.  I have been taking part in these for years, raising money to support various organizations, always linked to a friend or family member.  I have done the American Cancer Society walk and roll several times and love it!  For the first time, I am doing it for something directly impacting me as well, and I hope you will join me.   

Please join the Mickie Longstocking Team on Sunday, May 8th at 8am in Grant Park, Chicago for the Y-Me Race at Your Pace in support and celebration of the breast cancer community.

Walk 1 or 3 miles... Or, run a 5k. Up to you!

To join the Mickie Longstocking Team, visit: http://www.race.y-me.org/mickie
I'd love to have you join me for the walk.. but if you are up for running go for it! Maybe i'll be running in it next year myself.  If you can't make it on May 8th, please consider a donation to the team or to one of the walkers/runners on my site.  Our goal is to get more than 30 people on our team and to raise over $5,000! 

A quick recap of where we are at.........and how the heck we got here!

The last several weeks are a bit of a blur.  I cannot believe that tomorrow is April 1st, as that means I essentially missed a good part of the last 6 weeks, or so it seems....

Back in early February I had an odd swelling in the left side of my chest. Then it started to get really sore, so I went to see my local doctor, that was February 18th.  The pain reminded me of an infection I had a few years ago while nursing. The doctor  prescribed antibiotics and luckily decided to send me for a mammogram 'just to be sure'.  She said she thought there might be a cyst in there that needed to be drained. 
Then came the game changer- February 24th- when I went to Good Samaritan for the mammogram I am sure you can imagine the shock I felt when the radiologist told me I had cancer. You can probably guess at the string of expletives that flew out of my  mouth as I told her she was wrong, that I was only 39 years old , had 3 little kids and didn't she need a biopsy to make sure a diagnosis. She, however, assured me she knew what she was looking.  I essentially melted down right there.... 

Given my state, they called the doctor right then to get approval to do the biopsy that same day. The results came back the following Tuesday confirming the diagnosis.  I immediately reached out to breast cancer survivors in the neighborhood for recommendations on oncologist teams. I was surprised how many ladies at the local grade school had been through this already. I can honestly say that it was the support and encouragement of these ladies and other friends and family that got me through that first week after diagnosis.  My journey didn't begin in 'fighting mode' as I find myself now... it took some time to pull get my head around what I needed to do to beat this....and to believe I would beat this.

I chose an oncology team with the Lynn Sage Foundation at Northwestern Memorial Hospital.  My first appointment was with the cancer surgeon, Dr. Betthke.  The intent of this meeting was to determine the order of steps, specifically if he could operate given the size of the tumors or if I needed to do chemotherapy first to shrink the tumor.  The 'staging' of the cancer, I was told going into this meeting, would come after surgery, when they sampled the lymph nodes. This appointment did not go as planned. I went for what was to be a quick exam, followed by the meeting with he doctor to discuss the plan.  However, during my exam he clinically diagnosed me on the spot with a rare form of breast cancer called Inflammatory Breast Cancer (IBC) and told me that I was an automatic stage 3.  I could handle cancer at this point, and felt optimistic I was early and stage 1 or possibly 2. Hearing stage 3 floored me.  Two days later I met with the chemotherapy oncologist, Dr. Kaklamani, and she informed me I was 'at least' stage 3, meaning they'd have to do bone scans, body scans and other test to see if the cancer had spread.  Again, unexpected and bad news.  They also informed me I was Her-2 positive, which means by body is producing a protein that causes it to spread more rapidly and make it more aggressive.  This was all dumped on me on Thurs, March 10th.  They set up the scans and test for the following Monday. My sister Tara flew in from NY to accompany me for the day, as we had appointments from 7:00 am through 4pm.  This was without question the longest day of my life, as we went waited to hear preliminary results of the tests.  It was late afternoon when I was in for my last appointment, a lymph node biopsy, when my Patient Navigator Lynn literally interrupted my biopsy and said I had to check my voicemail. I had a short and sweet message from my Dr Kaklamani's assistant - telling me that my scans were negative- the cancer had not spread!  Words cannot describe the relief that I felt at hearing this. I was overjoyed to only be stage 3b and to have a new lease on life!

I begged to start chemo right away.  Knowing I was Her-2 positive and that it was already in my lymph nodes and chest skin, I needed to start right away.  I had baseline heart scans Tuesday morning and began chemo on Wednesday March 16th.  More on chemo another time, but suffice it to use the old clique that 'ignorance is bliss' because let me tell you I had no idea...... but 1 down, 5 to go, and my last chemo cycle should take place on June 30th.

So what is my diagnosis? Where does this leave me?   I have Inflammatory Breast Cancer (IBC), which is an advanced form of infiltrating ductal carcinoma. IBC is not common and is often hard to diagnose; I feel lucky they diagnosed it right away. I am Her-2 positive, my tumors are estrogen and progestin receptive, and I am stage 3B.  Those are the facts. The reality is that I will survive, I will beat this, I will come out stronger than I was going in, I will continue to live and love life, I will see my kids grow up, I will grow old with my husband, this cancer is not going to stop me!   

GAME ON!
Mickie