New IBC Clinic Opening Soon

crossposted on http:lynkelley.wordpress.com

I received this email from Patti Bradfield, co-founder of www.eraseibc.com, regarding a new IBC clinic opening soon.

Email below:

Hello All,

I would like to bring some very exciting news to our IBC community.  It is my pleasure to announce there will be a new IBC Clinic at Fox Chase Cancer Center in Philidelphia in approximately six months (if not sooner).

With this new clinic opening, it is also my honor to tell you that Dr. Massimo Cristofanilli will be heading up this new facility.

Yes, Dr. C is moving to the East Coast, but the Morgan Welch IBC clinic in Houston will be working closely and with the same protocols as those which have become standardized by Dr. C and his team over the last three years.

Also, In addition to his position in the department of medical oncology, Dr. Cristofanilli will be the co-director  of the Women’s Cancer Program,  He will also serve as associate director of clinical research for Fox Chase’s Cancer Center Support Grant from the National Cancer Institute.

From the Fox Chase website :   http://www.fccc.edu/news/2009/2009-11-02-cristofanilli.html

Fox Chase Cancer Center Appoints Massimo Cristofanilli, MD, FACP, Chairman of the Department of Medical Oncology (11-02-2009)
PHILADELPHIA (November 2, 2009) – Noted breast cancer clinician and researcher Massimo Cristofanilli, MD, FACP, has been appointed chairman of the department of medical oncology at Fox Chase Cancer Center and will hold the G. Morris Dorrance Jr. Endowed Chair in medical oncology. He will arrive at Fox Chase in January 2010.

Dr. Cristofanilli is very excited about this amazing opportunity and additional facility for women across the United States.

Please read the website from Fox Chase which will give you more details about this event and also more about our friend and Doctor, Massimo Cristofanilli.

Patti

What Keeps Me Up at Night

After reading Stella’s post it reminded me of something I wrote at the very beginning of my journey, now almost 2 years ago.  Re-reading, I could feel again the terror that swept though me in the time between diagnosis and active treatment — one of many junctures that seemed impossible to get through at the time. I posted it here in hopes that some of the newer members will not feel so alone and will know that there is life after all the struggle.

What Keeps Me Up at Night

I have been told, by the Warriors I know, the woman who have beaten Breast Cancer or are still in the throes of it, that this period I am in–the one between diagnosis and surgery—is the most brutal. Every night I go through the motions of a normal nighttime routine.  I wash my face, brush my teeth, set my alarm clock and crawl, exhausted, under the covers; only to lie there and listen to the endless parade of horrible thoughts that march through my brain. Sleep is not even a factor anymore.  Each night my stomach churns as if it were the evening before the start of a brand new job. Unfortunately, though, I don’t get to wake up, don a crisp suit and meet my new co-workers.

A friend sent me a quote recently; “Fear is just a lack of imagination”.  This I truly believe – in the daytime.  But when the dark surrounds you and your family is sound asleep and the dog is happily snoring next to you, it is imagination that takes over and elicits such intense fear that sleep becomes comical. My imagination tells me that the cancer is growing. That somehow it has jumped onto the nearest lymph node like the big Kahuna catching a ride on a radical wave and is surfing through my bloodstream. I watch it in my mind; I actually feel it happening in the quiet hours of the night.

When my imagination is not messing with me, it is the facts.  The information I read in books and on- line, things like: 40, 000 women will die this year from breast cancer. If the cancer has spread or returns, my chances of survival are sliced in half. I read that throughout chemotherapy I will be sick and tired and could get tingling of the hands feet, muscle and joint aches and a swollen heart.

Then my vanity kicks in. I know that I will lose my hair, this I have accepted. It is when I read that I will gain weight from the chemo – possibly 20 pounds – that I start to panic. Wait a minute.  I have always pictured chemo patients as emaciated and thin; tired and frail.  Not that I want to be emaciated, but, well it’s better than puffed up and bald, right?  I didn’t think I was going to look like Kojack!

It is at this point in the night I try to talk myself back down.  This vanity has to go.  Maybe the cancer is God’s way of reminding me that there is more to life than hair and a good figure. I am hoping that I learn that lesson.  I am hoping as I have been told that I will come out of this with a new lease on life, an appreciation for the little things and a new respect for the life I have been given. Tonight, while I lie awake, I will think about that and I will make deals with God –you know, the ones we used to make as kids all the time, like please make sure my mother doesn’t find out that I crashed the car and I promise I won’t drink– ever again. I will tell Him that I really, honestly will appreciate every leaf and piece of grass, every bird and every snowstorm, if he promises to let me keep my life and live to see my kids grow up. I will promise to stop yelling at my 14 year old and I will clean my house and slow down and smile more and go to Church. I will do all this if He will just make this go away……

Oh, and one more thing, I will ask Him if I could please, please get through this ordeal WITHOUT the extra twenty pounds? You know it can never hurt to ask.

 

My cross to bear (by Stella)

Dr. Wendy Harpham of On Healthy Survivorship poses a great question to cancer survivors last week.  She wants to know which stage of cancer was the most challenging?  Diagnosis?  Beginning treatment?  Ending treatment?  Some time in the middle? 

For Dr. Harpham it was those limbo days between initial diagnosis and treatment beginning.  I know what she means.  For me, it seemed an exceptionally long time.  I was diagnosed on December 22, 2005 – the Thursday just before Christmas.  Most every healthcare professional was heading out of town.  Certainly no one wanted to take on a new patient over the holidays.  Consequently, I didn’t meet with my new Oncologist until January 3, 2006 and began chemo the next day. 

Those 13 days were beyond horrible.  There was a cancer inside me thriving at my expense.  It seemed to grow bigger every day!  I could feel it.  I swear, I could hear it whisper dark promises of an early death and motherless children.

What bittersweet Holidays that year.  Daddy-O and I had agreed not to tell anyone about my diagnosis until after New Year’s.  Why ruin everyone’s Christmas?  The end result, however, was a great burden on our hearts that we couldn’t share with our friends and family.  Each seasonal tradition was painful beyond belief.  Who would search with loving dedication for just the right gift from Santa?  Who would listen to their babbling, aimless words and sift from them their heart’s desire?  Would I ever read The Night Before Christmas to my little boys again?  Would I ever see their eyes alight with the wonder that is Christmas morning ever again? 

The day I began chemotherapy was the. best. day. of the next 10 months.  No more being hostage to fate!  No more victim!  At last I was fighting back! 

Still, I don’t think that was the most trying time for me…  My toughest day was the day I truly started losing my hair and made the decision to shave the rest off.  Until that day I had not really felt ill despite my first round of chemo.  Until that day cancer had seemed vague and ephemeral; death had been theoretical. 

Roughly two weeks after my first chemotherapy treatment my hair began coming loose from my scalp.  Initially, it was funny.  It’s really the strangest thing.  It doesn’t fall out all over the place.  I didn’t wake up with a scalp on my pillow.  All the hairs still look firmly attached but they’re not.  It’s like they’re all held on with Post-It glue.  One little tug and it comes away in your fingers without so much as a “pip” to indicate the separation.  It’s kind of amusing in a hey-look-at-my-cool-new-party-trick sort of way.  A couple of mornings later and it’s not so funny anymore.  I won’t bore you with the details again. 

Losing my hair took me out of the closet.  I became a walking Poster Girl for chemotherapy.  Every time I looked in the mirror I was confronted with my mortality.  The baldness literally stripped me bare.  I couldn’t walk through the store without drawing stares.  My son would beg me to take off my hat to show his friends my bald head. 

With my hair went my vanity, my anonimity and my delusion that I would live forever.  Looking back I feel very, very blessed.

 Cross-posted to I Can’t Complain Any More Than Usual.

November 1: Sound off!

Happy November, everyone! Although we’re still a day or two away, I couldn’t WAIT to set up this month’s check-in! How are you? How’s treatment? Recovery? Mothering? If you haven’t posted in the last couple weeks, or if you just want to leave an update, this is a great place to do it!

Also check out the latest from our group blog:

Frankenlefty has left the building (by ThrowsLikeAGirl)

Death be not proud (by Rivka)

More birthdays, please! (by Susan)

Courage (by Sarah)

Benefit or burden? (by Stella)

I’m home (by Lyn)

Everyone is welcome to leave a comment on this monthly check-in post, to ask questions, to share concerns, and to leave notes of support, whether you currently are a writer for this blog or not. We’re a community ’round these parts, and this is one of the big places we act like one.

Now go hug those little goblins, and have a Happy Halloween!

Frankenlefty has left the building.

crossposted from ThrowsLikeAGirl

Or will have by 8 am tomorrow.  Same problem as last time.  Infected skin, no bacterial growth in cultures.  They took about 200 ml of fluid out of frankenlefty this morning.  Brought it down in size from a freakish stripper boob to a normal stripper boob.  Can’t tell you how much better that feels.  It had actually started to migrate to the right so I truly would have been uniboobed.  PS says I still have options.  I have to wait another 3 to 6 months to stabilize and we can work up a new plan.  Maybe one that doesn’t involve implants, depending on how frankenlefty looks without the expander.  That’s fine by me.

I have to admit there is just a tiny part of me that is glad to see it gone.  It’s been ridiculous, as I’ve mentioned before. I have to actually haul the thing up and out the window to reach things in a drive thru.  Definitely not going to miss that.  I will also be able to sleep on my left (once the drains are out.  Again.) without feeling uncomfortable.

Oh and I’ll have drains for Halloween.  I figure I can go as a Breast Cancer Awareness Borg.

I am 1 of 8.

Get your mammograms.

Resistance is futile.