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.

 

More birthdays, please! (by Susan)

As the health care bill makes its way through the Senate Finance Committee, and pink washes over the countryside, the American Cancer Society is campaigning for more birthdays. That’s right. More birthdays. Where in the past perhaps women have unofficially “stopped” having birthdays at 39, the ACS wants everyone to have more birthdays.

And you know what? I do too. I desperately want more birthdays. I want to turn 39, and 40, and all the lovely numbers that come after that. I want to blow out the candles with my kids, and see my littlest one turn 3, and 4, and become the big kid that he thinks he already is. I want to take my big kid to school, and teach both kids to drive, and be there when they get all gussied up for prom, or whatever the digital equivalent will be in 2025 (yikes!).

I’m taking steps to make that happen. And I’m telling you all about it every step of the way. I also talk a lot about mothers with cancer that I know from the other site, like Lyn, who just returned home from a double mastectomy and full hysterectomy … just a week after she finished chemo! Or our Aussie friend Jenni Ballentyne, who is living full-time at hospice now, seeing her son Jack on the weekend, who has fought the good fight, but whose time is near. Or Katie Homen, who we recently lost. But today I have someone else to talk about.

Sherry K. Miss Sherry, as my kids call her, as their faces light up with smiles. Miss Sherry was my son’s preschool teacher last year. Soft-spoken, kind, but determined, Miss Sherry always saw the best in the kids, and helped bring it out in them. The class of 3’s was close-knit, gentle with each other, and friends with all. In the early morning, both boys and girls sat quietly and did puzzles at the table. At 10, both girls and boys ran around on the playground. At noon pickup, they were the well-behaved class that came down the hall quietly, but with smiles on their face. Whether encouraging parents to leave notes of praise for good behavior the kids had done or telling us about the way our kids loved participating in the drama skits she planned, Miss Sherry was always gentle, and kind, and attentive, and all the things you’d hope your child’s preschool teacher would be.

Miss Sherry helped me, too. The first day I met her was only days after my oopherectomy, and I was so faint it was difficult for me to squeeze into the little chairs at the preschool-sized table. I was self-conscious about my arm, with the sleeve and glove that marked me as “different.” I didn’t want my kid to be seen as different, though. I didn’t want people feeling sorry for him, or have him referred to as “the one whose mom has cancer.” I didn’t want people to know. But Miss Sherry knew. And she pulled me aside and shared a little secret with me.

Miss Sherry is a 21 year survivor of breast cancer. And she is now doing wonderfully, and remembers it as a time long ago, not a driver of every day life. Throughout the year, she kept tabs on me as well as my child, asking about me when I wasn’t the one to drop Widget off at school, complimenting me on my hair as it grew out, or when my color returned and I looked like I had more energy. She was there when I had to go back to daily lymphedema therapy, again, and again, and sometimes Widget was late to school. She is still there at the school this year, and we smile as we pass in the hall. We know something that not everyone knows, you see. We know how very precious this life is, and how I almost lost this opportunity to tell you so.

Miss Sherry put a note in the preschool newsletter this week, reminding everyone to get their mammograms, do their self-exams, and remind “all the women in your life” to do the same. It may seem like a little thing, to say what everyone says in October, but for a 21 year survivor to even want to think about this dastardly disease again, much less show such compassion and outreach, means a lot to me.

And so I dedicate this post to Miss Sherry, and I wish for her, and for all of you, many, many more birthdays.

…

Is there a survivor in your life that inspires you, makes you laugh, or touches your heart? Join the ACS more birthdays meme by posting about her or him on your own blog, or in the comments here, and grab yourself this badge.

More birthdays. That sounds pretty good to me.

crossposted at Toddler Planet.

I’m home (by Lyn)

I have more day to day info at my personal blog, but I wanted to post here that I’m home from the hospital after surgery and give an update.  I had a modified radical on my left breast, a bi-lateral on my right breast, and a full hysterectomy all at the same time on Oct. 2nd.  I wish I could say it went smoothly, and is going smoothly at home recovering, but it was tougher than we expected.  The hyster surgeon ended up spending an extra hour operating on me due to scar tissue from my c-sections that had somehow glued my uterus and bladder to each other or my insides, or something.  My bladder took the blunt force of that part of the surgery and had to leave the catheter in for 4 days to let it rest.  I was supposed to go home after 2.  Then I ended up getting a nasty bowel infection while in the hospital.  I was released on Weds. the 7th, and in the ER on Friday the 9th due to the infection getting worse.  Then Friday night my bladder started leaking (this was just this weekend) so here I am trying not to move my arms too much yet unable to use my tummy because of the bowel infection, and now my bladder LOL.  I was a sight!!!  At one point Saturday I was laughing so hysterically at how pathetic the situation was.  But lo and behold, Sunday brought some relief and I did feel a little better yesterday from all of it.  My infection is still not gone, but it is improving and I just called the doc about my bladder and he sees me tomorrow.  He told me at the appointment in a little joking matter ‘if I break it I fix it’, so I fully intend for him to fix it!  I get my right drain out this afternoon, my left is still not ready and will probably be at my appt. this Friday.  I don’t have alot to say on the emotional aspect of what I’m feeling about not having my breasts, I’ve been so consumed with all the unexpected pains to think on it much.  I’ll get there I’m sure.  I’m still in alot of pain, I heard that the mastectomy doesn’t hurt that much because they cut alot of nerves with it, but my left side does hurt the most out of all of it. When the pain ebbs, the infections are gone and my bladder is fixed, maybe I’ll be able to say it was worth having it all done together but for now I’m undecided.  My advice to anyone contemplating having such a radical surgery is this:  don’t do it the week after you finish 5 months of chemotherapy.  Give yourself a few weeks to recover from chemo first.  I’m convinced that my compromised immune system is what has made this so much harder.

On a brighter note, my pathology reports came in.  4 lymph nodes positive out of 15 and only trace ‘miniscule’ is the word the surgeon used of cancer left in the breast itself.  I have Inflammatory Breast Cancer, so it’s a little different in that it was spread all over the place as opposed to being 1 tumor.  She said there was no live cancer visible to the eye, and only under the microscope did they find the little bit they did.  It was all dead cancer/scar tissue.  She was very confident that she got it all (one plus side to having chemo the week before) and had definite clear margins.  She was thrilled as was my oncologist, and said that now I can consider myself cancer free.  Hmm… that sounds too weird yet.  Maybe after radiation and my next scan…

I will start radiation in about 3 weeks, and instead of the 6 weeks of once a day daily rads originally planned, my oncologist is suggesting a regime of twice a day rads for 3 and a half weeks.  Apparently studies are showing that it has excellent results with IBC patients.  I haven’t met with a plastic surgeon yet, nor the radiologist, I’m just trying to get through the next 2 weeks without any further setbacks.  Wish me luck.

My PET/MRI Results

I had to wait until my appointment last Friday to get the results of my MRI and PET. I thought for sure Dr. Webster had bad news because she didn’t call and wanted to wait until she saw me to tell me, I was pretty much freaking out. But it turns out I have great news to share.

My PET showed no cancer anywhere in my body, including my lymph nodes and possibly not even in my breast. It picks up inflammation, so it’s hard to tell from a PET about the breast itself, but I am free and clear of cancer everywhere else.

My breast MRI showed no tumors in my breast and the report read ‘lymph nodes all appear normal’.  No cancer in lymph nodes! (appears at least) The tumors that were there before have dispursed (they were just clumps of IBC anyway not really solid tumors) and everything it did pick up said ‘possible whatever the word is for dead cancer’ meaning it didn’t pick up any definite live cancer in my breast, and what it did pick up could just be dead cancer or thick areas. She hadn’t seen the report when I arrived, and we read it for the first time together. That was nerve racking let me tell you. But reading for myself that the tumors are gone was huge as I had 3 when I was diagnosed with a possible lymph node that was enlarged.  Dr. Webster’s words were actually ‘it is the best possible news we could have gotten’.  So surgery is on for next Friday, Oct. 2nd. I can’t believe I’m actually typing that I’m having surgery next week, but I hear it’s true.

I wasn’t sure how to post my news because as happy as I was, I also felt guilty because of all the wonderful women I have met so far who didn’t get such great MRI news. I wasn’t even going to post it as I did, but then the last few days changed my mind because it IS GREAT news! Not just for me personally, but it means that the treatment itself is working, is doing it’s job. On a not personal basis, that’s wonderful news for IBC treatments in general.  I am responding to the chemotherapy and the last 6 months of chemo have been worth it. I have my LAST CHEMO tomorrow! Can you believe it??? My last chemo is tomorrow, I honestly can’t believe it. Cycle 12 of Taxol and my FIRST 3 week dose of Herceptin. I begin taking Herceptin only every 3 weeks tomorrow for an entire year, it will be given through my port. It isn’t chemo so the side effects are much milder I hear, and I shouldn’t have too hard of a time on it. I even get it through radiation which I will get every day for 6 weeks starting about 3 weeks after surgery.

crossposted on http://lynkelley.wordpress.com