2011 Race for the CURE

In May 2010, I geared up to celebrate the 5 year anniversary of my breast cancer diagnosis. I set out to raise $5k to celebrate hitting the 5 year mark and, thanks to the support of many of you, I not only met but I exceeded that goal!

One month later, I received the devastating news that my cancer had not only returned, it had metastasized (spread) to my liver.

Down, but not out, I've spent the last year fighting like hell. I had a great response to the first chemo we tried -- bald but still smiling, I was able to give my body a break from the poison in February of this year. Mike and I celebrated by spending two weeks on safari in Kenya and I began playing ultimate frisbee again, taking the field at Master's Nationals with the lovely ladies of Crack'd. Unfortunately, the celebration was short-lived and the cancer has reared it's ugly head with a vengeance. I am back on chemo again and hoping to find another drug that will beat back the dragon.

Mike and I will be continuing our tradition of raising money for Komen, an organization that does wonderful work to drive awareness and early detection. We will be walking on October 2 and would like to invite all of you to join us. Please visit my page for more information: CLICK HERE
 
Of course... pink ribbons and 5ks, awareness and early detection are only a piece of the breast cancer puzzle. There is so much more we CAN do. So much more we MUST do to truly end breast cancer. Please consider also visiting/supporting these other worthy organizations that are focused on supporting women with breast cancer and research for Stage IV metastatic breast cancer:

• http://pinkdaisyproject.com/  
• http://www.metavivor.org/

ding ding ding...round 3...

I got a call from Dr C yesterday morning (at 7:15am - early!) and he confirmed what I, somehow, already knew.  While the bone scan and lung CT looked stable, there is clear progression in the liver.  As Dr C put it -- the good and bad news is that this tumor is quite content to just throw a party in your liver. 

Because this progression came within 6 months of my last dose of Abraxane, it's an indication that the tumor was beginning to adapt to the Abraxane and grow in spite of it (it couldn't have grown this much in just 4 months).  We'll be changing up the weaponry and the tentative plan (pending insurance approval) is to attack it with two new chemo drugs:

• Ixempra
• Avastin

The stomach pains that started just before our trip to Africa have gotten a bit worse and I knew that was a sign that things were just not right.  I'm so thankful that I know my body as well as I do.   I'm thankful that Mike and I took the trip to Kenya when we did.  It gave us two weeks to focus on us and not think about cancer or work or any of the normal-everyday-unimportant-issues that we stress about.  We focused on the beauty around us and between us and for that, I am truly thankful.

CA 27-29... 279

The day after we returned from Kenya I had an appointment with Dr C.  It's my second follow-up since the switch from chemo to Femara and the first blood work-up.  Unfortunately, the CA27-29 tumor markers are back up again, meaning that the Femara may not be working.  

Last year, when my mets were diagnosed, the CA27-29 was over 200.  Normal range is ~40, though the test is not considered super reliable and they don't use it routinely to monitor after early-stage diagnosis and treatment.  My doctor does use it with his metastatic patients as it can often be a leading indicator of whether the current treatment plan is working.  While I was on the Abraxane, the CA27-29 marker dropped significantly in September & the December reading was down to 50 (almost normal).  In February, it was at 60 and based on the reduction of tumor mass in my CT scans, we decided to take a break from chemo and try a hormonal therapy - Femara.  After four months of Femara, it's back up over 200. 

We'll be following up with a CT scan and a bone scan.  Depending on what we see, we'll decide on the next step.  If there is limited tumor growth, there are other hormonal medicines we can try.  Otherwise, we'll blast it again with chemo.  My body seems to tolerate the chemo fairly well, but Dr C is hoping to give me a few more months break before we go back to that. 

I should have the scans done in the next week or two -- will keep you posted on what we see.

Treatment Update (chemo break!!)

My CT scans were updated on Monday and as many of you have already heard, the results brought good news.  The spots on my liver continue to shrink and the micro-spots on my lungs continue to be stable.  What does that all mean?  Dr C wants to give my body a break from the weekly chemo and feels comfortable that the tumor is under control for the time being... enough to allow us to explore the use of a hormonal agent to try to maintain things while my body rebuilds itself. 

To give you all a sense of what this means, I've crafted a summary of "what's out?" and "what's in?" under the new treatment plan...

Out:  Chemo-induced menopause      In:  Lupron-induced menopause
Out:  Night sweats from chemo          In:  Night sweats & hot flashes
Out:  Blood thinners daily                  In:  Aromatase inhibitors daily
Out:  Avoiding bumps and bruises      In:  Lacing up my cleats again
Out:  Managing my Vitamin K intake  In:  Managing my Calcium & Vit D
Out:  Abraxane IV every week           In:  Lupron IM every 4 months
Out:  Bald head                                  In:  Chemo-curls
Out:  Oncologist visits every Wed.     In:  Me-time every Wednesday

The plan, in a nutshell:

• Taking a break from the weekly Abraxane (chemo)
• Switching to a hormonal medicine called Femara As you may remember, my tumors feed off of estrogen, so one way of treating them is to try to block the estrogen in my body.  I had been on tamoxifen for 4.5 years after my initial diagnosis and treatment (and had the recurrence while on that medicine) so I can't go back on that.  The next best option is a class of drugs called AIs or Aromatase Inhibitors.  These drugs only work in post-menopausal women (tamoxifen is the only hormonal that works in pre-menopausal women) so I'll need to take a shot to suppress my ovaries (Lupron -- had the shot yesterday).  The ovarian suppression shuts down ~97% of the estrogen in my body... the AI will block the remaining ~3% that is generated from your fat and muscle (the drugs work by blocking aromatase, which is used to create estrogen from fat and muscle).  Side effects of the Lupron & Femara include night sweats, hot flashes, mood swings, weight gain (typical menopause type symptoms), as well as fatigue, joint pain and risk of bone loss (again, related to the lack of estrogen).  For most women, the side effects are manageable, but some women have real difficulty with the severity of the side effects.  I had to stop the coumadin in order for them to give me the Lupron shot, so I am also at risk for another blood clot from my port (will have to watch that carefully).  Oh... and being an "educated consumer" paid off... my copay for Femara would have been $130 for 90 days... but I had a coupon from their website and it was only $10 (Novartis pays the rest!)...score!
• Follow up with Dr C in 6 weeks He'll do an exam and flush my port (with heparin... to keep it from clogging)
• CT scans again in 3 months If all goes well, we'll stay on the Femara... if the tumors start growing again, we'll have to go back on chemo

My body is still really worn down form the chemo, so for the time being, I plan to try to work from home on Wednesday's and continue to work a bit of a reduced schedule (funny that 40-45 hours/week is a "reduced schedule", right?)  Most of the pressure comes from within... I'll just need to make sure that I don't take too much on my plate and that I focus on staying healthy (enough time for sleep, exercise, etc)

Thanks to all for the prayers, hugs, notes and mojo... this last set of scans has been very encouraging and I am really looking forward to a break from the weekly drip!

C4YW

Mike and I attended a conference this past weekend in Orlando, FL.  It was C4YW (Conference for Young Women) sponsored by Young Survival Coalition and Living Beyond Breast Cancer.

Over 700 women joined the conference, representing nearly every state and 10 different countries.  I attended the same conference in 2006 in Denver -- only 400 women were there.  Incredible how much it has grown in those years (makes me wonder if it is growing due to better advertising... or due to the number of young women diagnosed with breast cancer??)

As the conference approached, I became a bit nervous about attending.  I knew that so much of the event was a "celebration of survivorship" and dealing with "the fear of recurrence"... "fertility after breast cancer".. "finding your new normal"... topics that really don't resonate for me... in fact, these are topics that cut like a knife, an ugly reminder of the realities of advanced breast cancer vs early stage breast cancer.  I dreaded having to wear "the orange lei".

Well, I didn't have to wear orange (they changed the color codes and it's purple now!) and there were separate breakout sessions tailored to the "mets girls".  This made it easy for us to find one another and we were like our own little sorority, slightly related to all the other women, but so much more aware of the ugliest side of the beast we call breast cancer.

We flew down to Orlando on Wednesday, first class (the tickets for 1st class were cheaper than those for coach!)  I have never flown first class before... needless to say, it was a bit of a let-down!  It was nice to board first and to have snacks served to us, but for a 1.5 hour flight, it wasn't really worth the hype. 

Aunt Joan, Hugh and Mary Beth (Mike's family) picked us up from the airport and we met up with Uncle Bud to have a lovely dinner at Sweet Tomatoes (a very cool soup/salad bar place... Nancy, you would have loved it!)  While all too short, we had a lovely visit with the Krater's. 

Thursday, we headed out early to spend the day at Universal Studios Islands of Adventure.  We had a beautiful day for it and we enjoyed the park very much.  The new Harry Potter ride was worth the 1 hour wait and the "Express Pass" purchase (extra fee to skip the line) was worth every penny!  We rode nearly every ride (even the kiddie rides), including Dr Doom Fearfall (never thought I would ride that!  I felt like one of the girls on "the bachelor" trying to overcome my fears and "take a risk"!), The Hulk Coaster (3x!) and pretty much every other ride that was open!  Afterwards, we had dinner at Bob Marley's along CityWalk and then headed back to the hotel.  A quick dip in the hotel's hot tub (much needed after the tiring day at Universal) and I was ready to crash by 8:30pm. 

The conference ran Friday - Sunday.  While some of the sessions were better than others, overall it was worth the trip.  I wish I had the time and energy to help them run that conference... there were so many things that could have been done better... but then again, I have pretty high standards!  We met some really wonderful women, a few supportive men and we learned a few things while we were at it.  The sessions included:

• Living with Mets: Understanding Trauma and Managing Your Stress Responses (Rating: D-)
• Care for the Caregiver: Metastatic Breast Cancer (Mike)
• Metastatic Breast Cancer: Treatment Update (Linda, Rating: A)
• Care for the Caregiver: Men Only (Mike)
• End-of-Life Issues: Creating a Legacy in Letters (Linda, Rating: B+)
• Healthy Living: Food and Fitness (Mike)
• Healthy Living: Food and Fitness (Linda, Rating B)
• Plenary Session 1: Medical Update (Mike & Linda, Rating A)
• Plenary Session 2: Self Image (Mike & Linda, Rating B)
• Plenary Session 3: Nurturing the Spirit (Mike & Linda, Rating A)

The sessions are supposed to be up on C4YW -- if you are interested, you can listen to the pod cast (there were also many other breakout sessions).  I was really glad that Mike came along with me.  It made me feel really supported and it gave him a chance to learn a little bit more and connect with a few others in similar situations.  While they had a few "care for the caregiver" sessions, it became obvious that there really isn't much available out there for "men who love women with breast cancer"... and I suspect they could benefit from some way of connecting... even if it is just to sit next to each other and drink a beer (men don't always like to talk about their feelings, but it has got to be nice to know that there is someone else out there who knows what it is like to have a wife dealing with this). 

Mike, Uncle Bud, Linda, Hugh, Mary Beth (missing: Aunt Joan)

Dr Doom Fearfall

Mike in Hogsmeade (just before we drank Butter Beer)

Mike gearing up for a ride on SpiderMan

Toon Town

Watching for the space shuttle launch from the top of "Me Ship, the Olive"

C4YW group shot

C4YW - attending the plenary session

where did February go?

I know February is a short month, but where the heck did it go?  I can't believe that tomorrow is March!  February was a crazy month for me, but I guess that is a good thing -- it means that I've been living my life and not letting cancer live it for me!  Here's a quick recap of the month of February...

Feb 2 -- chemo
Feb 6 -- fly to LA
Feb 7 -- caught up with Jessica Jarvis (and her new hubby) & Peter G in LA (laughter filled evening, of course!)
Feb 8 -- client mtg in LA... caught up with Jen Maupin and Ella (fun filled afternoon at the beach!)... redeye back to Philly (bad idea... remind me never to take the redeye from the west coast again... while I sleep well on planes, it's not enough time to get a good rest in!)

Feb 9 -- chemo

Feb 16 -- chemo

Feb 17 -- client meeting in Indy
Feb 23 -- week off from chemo!  instead... fly to Orlando FL!
Feb 24+ -- psuedo vacation in Orlando!  I'll do a full post to tell you all about it, but the quick story is that we got to visit with Aunt Joan and Hugh & Uncle Bud and Mary Beth... spent the day at Universal... and attended a conference for young women affected by breast cancer (more to come!)
Feb 27 -- fly home to Philly
Feb 28 -- CT scans follow up to see what the liver and lungs look like!
 
Looking back at February, it's probably no surprise that here I sit on Feb 28, with a miserable chest cold... I came home from my scans and crawled back into bed for 3 hours!  
 
I have definitely been pushing it to the edge.  It is a constant battle between living life to the fullest and making sure that I don't over-do it. I'm still learning to set those limits though -- hopefully I will be more successful at it in March!
 
 
Here's a few pictures... from the snowy cold winter of NJ... to the beautiful spring-like day in LA...
 

 

Another article... with a slightly better outlook

Not sure how I missed this one back in September, but here's a press release from MD Anderson: "MD Anderson study finds increases in 5-, 10-year survival at every stage of breast cancer". 

Funny story (totally unrelated) about MD Anderson... that only my ZS friends will truly appreciate.  While doing an alignment project back in 2001/2002, MD Anderson caused us so many headaches!  It kept falling out of the data set and as it is (obviously) a huge cancer center (little did my naive self know that at the time), we wound up doing rework all weekend long right before a big meeting.  I think I had memorized the DDD# for MD Anderson for years after that (I am sure it is still somewhere deep in my brain!)

Anyways, some points from the article:

Advances in screening for disease detection, better surgical techniques available to more women, and an increased number of therapies that reduce the risk of relapse in patients with both locally advanced and early stage disease, have collectively contributed to dramatic improvements in breast cancer's survival rates, according to a review of 60 years of patient records at The University of Texas MD Anderson Cancer Center.

From decade to decade, the researchers found an impressive increase in survival in all three stages of the disease, as well as overall survival:

Impressive increases and good news across local, regional and distant disease.  Better prognosis than the general stats that you see thrown around.  Still a bit sad that in 2010 we are just pulishing data through 2004, but I guess any progress is good progress, right?

The only thing I find disappointing in this article is the closing line:

"Now, we need to turn our attention to the refinement of breast cancer therapies, with a goal of further decreasing risk of recurrence and death for our high-risk early stage breast cancer patients, and maintaining the control of disease in those with metastatic disease," says Buzdar.

"Maintaining the control of disease" is great, but "finding a cure" would be even better.  I suppose I'll take it though... maintaining control is a good thing... if you can control it long enough, we just might find a CURE.

A Pink-Ribbon Race, Years Long (NY Times article)

This recent NY Times article has me on a roller coaster of emotion. I don't know whether to like it or hate it.

I like it because it resonates so well with many of my own thoughts and feelings.  I can relate to so many of the sentiments and frustrations expressed.  It doesn't just paint breast cancer as a cliche pink ribbon... of course, I hate it for many of the same reasons.  Because it is so painfully and terrifyingly true.

Despite the great strides we have made in awareness and in removing the stigma associated with breast cancer, we have done very little to impact the number of people dying from breast cancer.  The funding for breast cancer research is still 95% focused on early stage disease.  There is more we can do.  There is more we must do.

The article can be found in it's entirety here: http://www.nytimes.com/2011/01/18/health/18cancer.html.   Below is a summary of how well the article describes my own personal sentiments (items in bold are my thoughts and those in italics are direct quotes from the article)
. 

I am a breast cancer advocate but I am frustrated with the sea of pink ribbon waving survivors and the lack of awareness of and focus on curing Stage IV disease

“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve,” he said. “While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.

"While perceptions of the disease may have changed in recent years, the number of deaths it causes has remained fairly static, said Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston."

Dr. Hebert says that while the pink-ribbon campaign has raised awareness about breast cancer, it masks a relentless killer. “People like the pretty story with the happy ending,” she said. “We don’t have the happy ending. “

[Metastatic cancer is] responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget,” said Dr. Welch, a senior scientist at the Comprehensive Cancer Center at the University of Alabama at Birmingham, who studies genes that suppress metastasis. (Those genes are turned off when cancer is advanced.) “Funding agencies as a rule want to say their research portfolio is successful — they want a return on their investment very quickly.”

I am living life in 3 month segments... unable to plan anything further out than that

But theirs are not pink-ribbon lives: They live from scan to scan, in three-month gulps, grappling with pain, fatigue, depression, crippling medical costs and debilitating side effects of treatment, hoping the current therapy will keep the disease at bay until the next breakthrough drug comes along, or at least until the family trip to Disney World.

This kind of uncertainty keeps many patients from throwing themselves wholeheartedly into the ethos of hope and empowerment that helps sustain many women with less aggressive forms of the disease.

While there is a ton of support out there for breast cancer, I find it difficult to find a support network because I am every "early stage survivors" worst nightmare

Still, Dr. Hebert, an optometrist in South Windsor, Conn., went to her first support group meeting thinking that as bad as things were, at least breast cancer was not an obscure disease; she would not be alone.

But the room was filled with women who had early localized cancers. Some had completed chemotherapy years ago; they were “survivors.” When one newcomer asked Dr. Hebert for her story, she couldn’t bring herself to tell the truth.


"This woman had just been diagnosed,” Dr. Hebert said of her support-group encounter, “and I couldn’t bring myself to tell her: ‘I have it in my bones. I have it in several parts of my body. My treatment is never going to end.’

“It was a horrible moment,” she went on. “I had nothing in common with them. I was what scared them.”

Recent events have begun to illuminate the battle still left to be fought... and there is definitely hope to be had and successes to be celebrated

Mrs. Edwards’s 2007 announcement that her cancer had become “incurable” was an inspiration to many — it was also why her death was such a blow. “She put a face on the disease,” Dr. Hebert said. “I could explain my situation to people.


New drug treatments are keeping some patients alive for a decade or more, even after the disease has spread. And they can enjoy a higher quality of life than patients did in the past, because treatments are better focused and have fewer side effects.

“Over the past 20 years, we’ve had probably 15 new drugs approved by the F.D.A., and each of them adds an incremental amount to the length of life, “ said Dr. Gabriel N. Hortobagyi, director of the breast cancer research program at M. D. Anderson Cancer Center in Houston.

“I would never tell a patient with a newly diagnosed metastasis that there is nothing I can do,” he said, “because there are actually dozens of things I can do ... and there are many things we can do to control symptoms and prevent complications.”

 Depending on the type of tumor, patients may live for many years — working, raising children, starting nonprofit foundations, doing yoga and even running half-marathons.

Nevertheless, at the end of the day, breast cancer is still a b#%ch

The average patient may receive eight or 10 different treatment regimens in sequence, he said.
 
Stage 4 breast cancer can be treated, but it is considered incurable.

“You always hear stories about women who ‘battled it’ and ‘how courageous’ they were. Cancer doesn’t care if you’re courageous. It’s an injustice to all of us who have this. There are women who are no less strong and no less determined to be here, and they’ll be dead in two years.”

jealous irony

Oh the irony!   I was incredibly JEALOUS of the women who sat next to me at chemo today.  I mean, she has CANCER... and I was JEALOUS of her!  I can't stop laughing!

But seriously... I was.

As each nurse made her rounds through the room, she exclaimed.... "This is #8!!!  Only 4 to go!!!"   *cringe*

I remember those days.   The motivation of being able to "count down" my remaining chemo treatments... counting down to the day that this would be in my PAST.  That I would be looking forward to the rest of my life.  I no longer have a countdown.... only a count... (22 weeks done!)

Another irony though... I remember that day... the day of my "very last" chemo treatment in 2005... I cried.  I did not cry the day the doctor had told me I had cancer... nor did I cry on the day they tried to surgically remove the tumor from my breast.  But I cried as they disconnected the IV from my hand on my "very last Taxol" treatment.  I cried because the future was so uncertain and scary.  I cried because I no longer had the security blanket of the poison they were pumping through my body.  I just had to trust that I did all I could... and hope that it was enough to keep the dragon at bay.

I am jealous of the women who are counting down their treatments... anxiously awaiting the end of treatment so that they can put this whole miserable experience behind them...  I still trust that I did all that I could five years ago... and I still hope that each treatment I undergo forces the dragon back -- bit by bit.

it's almost like a normal Christmas...

Gosh -- it's so funny how quickly I swing back and forth between cancer-land and normal life. 

Cancer-land is this crazy place where cancer is front-and-center. 

• Every Wednesday I'm in cancer-land (obviously.... I'm at the oncologist, surrounded by magazines about cancer and other people with cancer... and they stick a needle in my chest and pump my body full of poisons... how could I not be in cancer-land?!) 
• Many Thursday's I'm in cancer-land (I wake up so stuffy and tired that it takes most of what I can muster to climb out of bed, into the shower and head out to work)

Most other days are pretty normal.  Over the past two weeks, I've:

• baked cookies (m&m, snickerdoodles and chocolate-drizzled sugar cookies -- Regan helped!)
• completed my shopping (and then some!)
• wrapped the gifts
• decorated the house
• finished off the Christmas cards
• cleaned out the junk drawer (ok - I know that has nothing to do with the holidays, but that's what I did today!)

Normal stuff, right?  Almost seems like a normal Christmas!  But even on my most normal days there are moments... when I drop into the reality of cancer-land:

• when random strangers come up to me at craft shows and in hotel lobbies and in stores... to tell me "they beat it two years ago... so can you" (little do they know that my cancer started FIVE years ago... and that there is no cure for my late stage cancer... that I'll be in treatment for the rest of my life!  What do I say?  These days, I try to harness my inner Christmas spirit and appreciate their caring and smile and nod... though sometimes I do slip and say something snarky, even though I know they only mean well)
• when I pull on one of my favorite sweaters and it's so tight on my right arm because it's still swollen from the stupid blood clot in my port
• when I can't figure out which scarf goes with my outfit
• when I have to retie my scarf for the 3rd time because I can't find a winter hat that fits over the scarf and the scarf alone is not warm enough outside... so I have to keep switching between the scarf and the winter hat (I'm starting to just wear my winter hat all the time!)
• when I walk through macy's or target and ultimately find myself in the children's clothing section and my heart breaks when I look at the adorable outfits, knowing that I'll only buy them as gifts for other people's babies
• or... when I take time to admire the beauty of the lights and trees, the sharpness of the cold air, the smiles and laughter of people as they walk down the street... and I feel blessed to have that moment... and I know that I must savor it.

I guess cancer-land isn't all bad... and I'm feeling fortunate that I feel so well most days... and that this Christmas is almost like a normal Christmas.

#19

#19 is my favorite number.  It's been my "number" for years (for ultimate).  And today, I rocked # 19 for Abraxane...

Last week, Dr Cairoli mentioned that his birthday was this week.  This morning I made him a batch of peanut butter m&m cookies.  I figured he would have one and then leave the rest in the kitchen (people often leave goodies there for patients and their supporters), but he took them back to his office!  (Of course, Mike said he's probably just waiting to put them out until tomorrow so as not to hurt my feelings!)

I also got him a birthday card, but struggled with what to write in it.  What do you say to the man who is fighting to save your life?  Thank you.

My liver is a winner...

 OK... time for a quick game... which liver would you want to have? 

(Note: the liver is the organ on the left side of each image -- these are a cross section of my abdomen.  If a magician were to saw me in half and turn me sideways, this is what you would see!)

*** scroll down for the answer ***

If you picked the liver on the bottom, YOU ARE A WINNER!!!!


The image on the top is from Sep 3. The liver is the large organ on the left side of the image. The darker spots on it are the bad stuff. Yeah.... there are quite a few of them... can you find all 8 or 9 visible spots?

The image on the bottom is from Nov 30. Even without an MD, it's pretty easy to see the difference. This is remarkable improvement over the past 3 months!
When comparing the first CT scan from June to the September scan, it was hard to tell the difference. Dr said it was good progress and I definitely trust him, but it was not a whole lot to get excited about. This time it's a totally different story.... and it is so much more comforting to really see the progress for myself.

Because it's working so well, we are going to try to stay on the Abraxane for a bit more (maybe another month or two). Hopefully, the neuropathy in my fingers and toes will remain manageable. At that point, we may again be thinking about trying hormonal therapy for a bit (to give my body a break from the chemo and hoping that it will maintain the result for a while). We'll have to figure out a few things to determine the best plan -- the most likely hormonal drugs are only for post-menopausal women... not a problem now as I'm back in "chemo-pause" but if my estrogen levels come back up when we stop the chemo, we would have to think about how to supress my ovaries... but in the grand scheme... good problems to have!



breakfast of champions

Mmmmm.... a full bottle of Redi-cat.  Truly is the breakfast of champions.  Nothing like rising early to have time to pound the bottle 90 minutes before my CT scans! 

Fingers crossed for good results (hopefully I will hear tomorrow when I go in to see Dr C)

17

Today is the 17th.  Incredible how time flies by.  I've now been back in active treatment for four and a half months.  I've had a chest xray, an MRI, a bone scan, an ultrasound, one surgery (to place my port) and 4 CT scans (if you include the one they did during the liver biopsy).  Plus 17 doses of chemo. 

I'm off next week - it's nice to have the extra time for my body to rest.  Mike's been collecting my blood counts each week and analyzing the data (surprising, right!?). It's interesting to see how my counts go up in the weeks that I am off and then they gradually drop with each week of treatment.  This is for my white blood count (the normal range is 4.8-10.3 x 10^3/mm^3).  It's also interesting that I jumped significantly in early November (actually into the normal range!) -- hopefully that's a sign that my body is learning to handle the chemo (as opposed to a sign that the chemo isn't working as well?)  I prefer to believe the former... after all... after 17 treatments, I've got to be getting better at this, right?

The Cancer Sleeper Cell

Interesting article in the New York Times about "the biology of cancer cells".  I had never heard this theory before (and I have done a ton of research on the topic)! 

The research hypothesis is that some types of cancer have "stem cells" that are responsible for the regeneration or recurrance of cancer (similar to the notion that blood stem cells are responsible for the regeneration of our blood cells).  Research on leukemia found that nearly 1 million leukemia cancer cells needed to be implanted into a mouse in order for the cancer to grow.  Fewer than that and the cancer did not grow in the mice.  This suggests that the 1 in a million leukemia stem cell could be responsible for regeneration.

"If stem cells can be found for certain forms of cancer, and if a drug can be found to kill these cells in humans, then the clinical impact of such a discovery would obviously be enormous.  And its scientific impact would be just as profound. Centuries after the discovery of cancer as a disease, we are learning not just how to treat it — but what cancer truly is."

http://www.nytimes.com/2010/10/31/magazine/31Cancer-t.html?pagewanted=1&_r=2

Pinktober: It's Not Over 'til We Say it's Over

I wanted to share a posting from a discussion group/support community to which I belong.  I found it very touching and inspiring and wanted to share it with you.  I will be joining these ladies on Sunday night, remembering women who have touched my life:  Marcela Vargas & Terry Gifford.  Please read on and consider joining me in remembrance of those "whose time was all too brief and hope for brighter days ahead"

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Breast Cancer Awarness Month is winding down. I'm relieved it's over with and glad that I succeeded in some small way of creating more awareness for metastatic breast cancer. I will start earlier next year and build on what I've learned.
But I've also decided to create my own holiday: Breast Cancer Remembrance Day. On Oct, 31, the final day of Breast Cancer Awareness Month, I will remember the friends and family I have lost to this disease. It's Sunday, so I will light a candle for them and say some prayers.
I will wear black, not for its funeral implications but for its simple dignity, a quality that has been sadly lacking these past 30 pink saturated days.

At 8:45 that night I will go outside with a flashlight. I'll think of the one in 8 U.S. women who will get breast cancer and the 45,000 who will die this year.
My eighth grade science teacher told us if you turned on a flashlight and pointed it toward the sky the photons leave the flashlight and they immediately start to spread out. Provided that they don't hit anything, each individual photon travels through space forever.
Time slows down as you approach the speed of light.
I'll think of those whose time was all too brief and I'll hope for brighter days ahead.

moratorium...

While the name of this article is fairly ominous... "moratorium".... seriously???... the following article is quite interesting.  I have to imagine that this is over-stating the lack of funding for research into Stage IV cancers, but at the very least, I am now realizing how much this segment of the "cancer population" is over-looked...



'Moratorium On Studying And Treating Terminal Cancer Has Ended' - Genomic Systems Announcement

Terminal metastatic cancer - the presently untreatable cause of the great majority of all cancer deaths - has now been effectively treated in three common fatal cancers in mice, according to an announcement by Genomic Systems, citing research published online in the Proceedings of the National Academy of Sciences (PNAS).

Research conducted by Robert J. Debs, M.D., senior scientist at the California Pacific Medical Center Research Institute in collaboration with four other laboratories has shown that a monoclonal antibody targeting a protein called PECAM-1 is effective against this now invariably lethal stage of cancer in mice. This antibody also treats less advanced cancers, as well as the debilitating wasting syndrome that can develop as cancers progress.

Anti-PECAM-1-antibody produces its anti-cancer effects not by binding to tumor cells, but rather by binding to PECAM-1 on the surface of normal endothelial cells that line blood vessels. Because it acts through normal cells rather than directly on cancer cells, it is effective against a variety of different cancer types.

Laboratory testing has now shown anti-PECAM-1-antibody to be effective against colon cancer, breast cancer and melanoma. These are among the most frequently diagnosed fatal cancers in the United States, according to the National Cancer Institute.

"For the first time, preclinical studies provide hope for patients and their physicians that even the terminal stages of cancer do not invariably represent a hopeless situation. Our research has shown that some terminal cancers, as well as the debilitating wasting syndrome that can accompany them can now be treated in mice, said Dr. Debs. "Hopefully, these studies will encourage increased interest in studying terminal cancers, as well as stimulate others to develop additional new therapies that effectively target this most devastating stage of cancer."

The research also indicates that this antibody is well tolerated, even when administered at high doses to mice already debilitated by very advanced metastatic cancers. The antibody appears to work by selectively blocking PECAM-1's regulation of secreted proteins that promote advanced cancer's now lethal growth. Dr. Debs believes that specifically targeting these growth-promoting factors themselves may further improve the treatment of terminal cancer, and has the potential to significantly improve the lives of patients now suffering hopelessly from it.

"Preclinical studies focusing on terminal cancer are rare. Therefore, these patients have no therapies to either treat their cancer or give them hope. As a cancer specialist, all I could do for my patients with terminal cancers was to help make their remaining days as comfortable as possible," said Dr. Debs, who is trained as a medical oncologist and hematologist. "To be able to offer my patients with advanced cancers only palliative care and referral to hospice was not why I chose to become a cancer doctor. The profound, unmet medical and human needs of my patients in the terminal stages of cancer drove me into research."

Genomic Systems is working to develop Phase 1 testing of anti-PECAM-1 monoclonal antibody in patients with advanced cancers, hopefully within 2 years.

Genomic Systems, LLC, a privately held company, provided partial funding for this research. In accordance with PNAS financial disclosure policy, Dr. Debs and three other researchers have financial ownership investment in Genomic Systems.

MBC Day

October 13 is Metastatic Breast Cancer Day. 

Who knew?  Seriously... you can't even turn around without seeing a pink ribbon, right?  Well, after all... it is October... It's actually pretty incredible to see how BC month has become so mainstream.  How it's infiltrated our wrists, our tshirts, water bottles, purses, sunglasses, kitchen products, cookbooks, cosmetics... even our liquor! (wait... don't they say that drinking increases our risk of BC?)

It's become so prevalent that people are starting to become anti-pink.  Articles are popping up about all of the other "neglected cancers", jealous of the power of pink.  While I agree that funding is needed for all cancers, should we really be complaining about raising money and awareness for breast cancer?  Seriously.  And, while it is a constant reminder of my own situation, I suppose the more aware people are, the more likely we are to actually find a cure some day (and hopefully that day is soon!)

Of course, what you don't tend to see in the sea of pink media frenzy this October is the fact that while early stage breast cancer is "curable"... Advanced Breast Cancer or METASTATIC breast cancer is not.  It is a chronic and, currently, terminal disease.  As Musa Mayer says in this article by Dr Elaine Shattner, "It used to be the C-word," she says. "Nobody said they had cancer. Now it's the M-word nobody mentions. The word is metastatic."

Now that the world is aware... we need to shift our focus and continue to search for a CURE. 

"Support" Group

I felt like Billy Madison after his first day of fourth grade ("I'm never going back to school... never!")... for serious. 

"Support Group -- For Young Survivors".  In theory, this sounds great.  A bunch of other young women dealing with similar issues... you can share your feelings and have people relate to you. 

In reality, it's a rotating door of new people and random nursing students (there to watch and learn from the young women with breast cancer) sitting around a conference room table in a cold room snacking on store bought cookies... a group that's been dealt a similarly unfortunate hand... but ultimately, a group of strangers.  How are you supposed to open up and make yourself any more vulnerable in a group like this?  Why would I share anything with this group that I wouldn't share with my friends?

I suppose they can nod their heads and agree with how much it stinks to have cancer rip away the control you thought you had on your life, but I'm not sure how that helps.  Despite my doubts, I decided to try a few meetings.  I don't think I will go back.  I know I won't.

There were a few women there who seemed like women I might be able to connect with... I was expecting to feel a camaraderie towards these women... a shared struggle... but for the most part, I just found myself annoyed. 

There were the women a year or two out who "just wanted to give back to those newly diagnosed"  --> and I was annoyed because "who were they to be sitting there so smug, giving back to me... I had been fighting this battle longer than any of them"   (of course, I didn't say this... I just smiled and nodded)

There was the repetition of "I was stage I... I was stage II... thank goodness I caught it early before it was stage IV..."  (I bit my tongue)

There was the woman 3 years out who is expecting a baby any day --> I should have been excited for her... but instead, I could feel my blood pressure rise as she casually commented "lucky for me I was er- so I could have a baby after my cancer"... and... "I'm not looking forward to the sleep deprivation"

And then... there was the conversation that devolved into how hard it is to be a mom and complaining about the challenges of motherhood.  Not motherhood+cancer... just motherhood (terrible twos, back to school, playdate drama, etc).  I felt like I had teleported from a "young women's breast cancer support group" to a "mommy's support group"... not that I am in any way questioning how hard it is to be a mom.  I know it is a tiring and difficult job and it would have been fine if it had been a passing commentary.  But we just stayed there, talking about their kids, for what felt like forever. Until I couldn't breathe.  Until all I could do was to stand up and excuse myself in the middle of somebody's story and book it to my car... and sit there, and sob and think about how much I wished I had those "problems".

Is it just me... isn't the issue of fertility a particularly sensitive one for young women with breast cancer?!?  Maybe that was a fun conversation for the 60% of the room who was married with kids... but what about those of us who had not yet started our families?  Who are dealing with the fact that they may no longer have that option. Women for whom that decision has been made for them. What about the young woman next to me whose boyfriend broke up with her because he couldn't deal with her diagnosis?  Who is wondering how she will ever meet a partner... let alone start a family. 

A quick glance around the room and it was obvious to me that not everyone was engaged and, in fact, several people (myself included) were visibly uncomfortable.  But because we are strangers, nobody was comfortable enough (myself included) to say "can we please change the subject?"  Seriously.

I'm not sure what I was really expecting from the experience, but this was not it.

the whole truth

As many of you know, my first set of follow-up tests were last week and I received the results today.  While they brought mostly good news, they also brought a new reality... one that I've known in the back of my mind for some time now but I have been reluctant to face or to share.

CA-27/29 tumor markers are lower
CA 27-29 is a blood test that checks for a specific tumor marker.  They don't use it for general tracking or diagnosis because the markers do not always appear elevated with the presence of cancer and sometimes they can appear elevated due to other reasons... basically, they are super finicky!  They are, however, commonly used to determine whether a cancer is responding well to treatment, particularly in advanced disease.  Dr Cairoli ran this test after we confirmed the cancer had spread to my liver this past June.  At that time, my markers were over 200 (the normal range is 20-30!)  At my appointment two weeks ago, he checked the marker again and the result came back with significant improvement.  This is a sign that the chemo is working!

CT scan of liver & lungs look better
The first test that Dr Cairoli did when I called him in June was a CT scan of my chest/lungs.  Based on the chronic cough and the results from the chest x-ray, he was initially looking for problems (read: cancer) in my lungs... and he happened to find the tumors in my liver.  My lungs at the time showed no tumors, but they did appear a bit cloudy.  Just to be safe, he scanned both my lungs and my liver last week to check how things are going. 

The lungs look much clearer, which is not surprising, since my cough went away 2-3 weeks after I started chemo!  This suggests that my cough was very much related to my breast cancer -- and that the early activity in my lungs has responded very well to treatment. 

There are no new spots on my liver and some of the larger tumors appear to have gotten smaller.  Again, very good news and a sign that the Abraxane is doing its job.

I have Stage IV breast cancer
While many of you probably realize this, I know that I haven't been as blunt about my diagnosis as I could be.  Once cancer spreads from one organ to another, it is considered to be Stage IV.  My initial diagnosis in 2005 was Stage IIB.  My diagnosis this June was Stage IV.  Stages I & II are commonly referred to as "early stage"... this is what you hear a lot about in the media.  With improved testing and awareness, early detection has increased significantly, particularly in the US.  This is great news because early stage breast cancer is considered extremely treatable. 

Stages III & IV are referred to as "advanced stage".  Sounds scary, I know.  Nobody wants to be Stage IV.  All the rest of the cancer patients give thanks that they are not Stage IV -- I know I sure did.  There is no "cure" for Stage IV cancer.  If you go online and start googling you will see all sorts of scary statistics about Stage IV cancer.  I recommend against this.. but if you decide to do it anyway (many of you, I'm sure, already have) please remember this... I have never been one to let the statistics hold me back.  I am a female engineer-turned-consultant who joined ROTC and a sorority in college, has worked for the same company for 11 years, plays ultimate frisbee in her freetime and lives in NJ... what are the odds of any of that?!?!  (especially the NJ part for those of you who knew me when I swore "when I grow up I want to live somewhere in the northeast... anywhere but New Jersey") 

I fully intend to be an "outlier"
As I've said -- I've never been content to be just "average".  This time is no exception.  From day 1 at ZS I was taught that outliers could totally skew your analysis... that in real life, data is messy.  We would typically "pull the outliers out of our analysis"... and so for many years, I tossed the outliers aside.  But now... I fully intend to become one of them.  (once your done reading this, please go and read this NY Times article about an outlier I hope to emulate: "17 Years Later, Stage 4 Survivor Is Savoring a Life Well Lived")


Of course, the reality of this is that "treatment" will be a part of our reality for the rest of my life.  It's kind of like having diabetes or some other chronic disease.  If you ignore it, it inevitably gets worse (yes, Nancy... this was my public service announcement to warn people not to sit on public toilet seats!). 

Abraxane is currently my best friend and will be indefinitely
My tumors are responding well to the Abraxane and my body is holding up well to the drug. The side effects have been tolerable and we are getting into a rhythm with it.  This means we will continue with this chemo for the foreseeable future.  3 weeks on... 1 week off.  Hopefully, the response will continue. 

We will run tests again shortly after Thanksgiving to see how things are going... and we will take it from there.