The X Factor

My Xeloda arrived. I took my first four tablets about five minutes ago. I think I am experiencing every side effect I read about. OK, I am experiencing nothing. Except fear and dread. I know I'll be fine. I'll know I'll get better. But the unknown is driving me a bit crazy. I just started chemotherapy. I hope my lungs get better. The End.

Tell me you wouldn't be scared:

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Capecitabine

(kape-site-uh-bean)

Trade/other name(s): Xeloda

Why would this drug be used?

Capecitabine is used to treat breast, colon, or rectal that has spread (metastasized). It may also be used to treat other types of cancer.

How does this drug work?

Capecitabine belongs to a group of chemotherapy drugs known as anti-metabolites. It keeps cells from making DNA and RNA, which stops cancer cells from growing. Capecitabine is converted to the drug 5-fluorouracil (5-FU) in your body, letting more of the active drug get to the tumor.

Possible side effects

You will probably not have most of the following side effects, but if you have any talk to your doctor or nurse. They can help you understand the side effects and cope with them.

Common

• diarrhea
• nausea
• vomiting
• sores in mouth or on lips
• tiredness or weakness
• numbness, tingling, itching of hands or/and feet*
• skin redness, rash, dryness
• low red blood cell count (anemia) with increased risk of tiredness (fatigue)*
• skin irritation

Less common

• low white blood cell count with increased risk of infection*
• low platelet count with increased risk of bleeding*
• pain in the belly, back, or joints
• constipation
• poor appetite
• heartburn after eating
• fever
• feelings of pins and needles in hands and/or feet*
• headache
• dizziness
• trouble sleeping
• cough or trouble breathing
• eye irritation
• skin color changes
• hair loss or thinning (including face and body hair)
• bleeding from the bowel
• abnormal blood tests which suggest that the drug is affecting the liver (Your doctor will discuss the importance of this finding, if any.)

Rare

• severe diarrhea with dehydration
• depression
• bowel damage (necrotizing typhlitis)
• heart damage with swelling of ankles, chest pain, abnormal heartbeat
• peeling and blistering of palms and soles of feet*
• allergic reaction
• death due to bleeding, heart failure, heart attack, infection, or other causes

The Pet I Never Wanted

Tuesday's Pet scan was a gas. I awoke at 7:10AM for a 7:30AM appointment. Somehow I got to Columbus Circle Imaging on time albeit, looking like a dishrag. Thirsty (no fluids before the test) and tired, I filled out my paperwork and was then escorted to meet Chris, my tech for the morning. It took two techs to poke, prod, and find a cooperative vein into which a radioactive liquid (tracer) was injected and caused a cooling sensation throughout my arm.

Chris then asked me, "So, what flavor beverage would you like?" Beverage? Are we on an airplane? No, we're in a cold, sterile basement with intimidating machines, one shaped like a donut, which is going to scan me from my head to my knees. There are no beverages served here, only chalky, creamy, gag inducing liquids with a touch of fruit flavor also known as Barium Sulphate Contrast Suspension (a contrasting agent). I chose apple. I was led to a small room with a reclining chair, a newspaper and a heater and was left to sip my vile drink while for the next 55 minutes, the tracer got absorbed into my body's organs. After successfully finishing my apple essence Elmer's-Glue-like diluted milkshake, I took a nap.

The scan was easy enough because I was not entirely enclosed in the donut; it should be tolerated well even for the severely claustrophobic. The only challenge was keeping very still for a half hour but I was strapped on to the bed rather snuggly and was able to catch another few Z's. I then got dressed, waited for my CD and was on my merry way. 

Although Al Gore never mentions this, I think what ensued next might partially be responsible for global warming. Oh my goodness, the rumbling, the sounds, the explosive nature of this so called beverage really warranted some sort of warning especially while wearing a down coat, trapping the gas like a Dutch oven, and heading into work. I had so much gas in me I thought people were going to separate into odd-even lines. This lasted, hmmm, pretty much the entire day and all I can say is thank goodness a) I have my own office and b) I didn't asphyxiate myself.

Before I hit you with the results, I just want to say if you're still reading this entry, I thank for not leaving.

The following day my oncologist called with the great news that the cancer has not spread to any other vital organs!  There were some things spotted here and there, however, Pet scans pick up everything, but not everything it sees is cancerous. There was one area of ever so slight concern in the mediastinum but it could've just been inflammation caused by my surgery. The only way to follow up on this will be with the next Cat scan I get after my first couple rounds of chemo.

Which brings me to the horrible experience I've been having trying to obtain the Xeloda Rx. Between my oncology nurse and myself, we must've made at least 15 phone calls circling around from one specialty pharmacy to the next only to be circled back to the first one, Optum, which said I wouldn't be covered yet in fact I am. Although I loose patience with myself easily, I always try to remain calm with others and not raise my voice for this typically never helps a situation. But throughout this ordeal I reached the point of screaming at a United/Oxford rep, "I have tumors all over my lungs and you are refusing to help me!!!" I think that got her attention. After finally placing my order with Optum I still was not convinced it would ship so the next day I followed up and the rep said, "Oh yeah, it's scheduled to ship but we can never ship before speaking with the patient." Really? What do you call what we did yesterday? Do you really think they would've called me? The prescription never would've left and I'd still be wondering where it is. Alas, it DID ship and it is now stuck somewhere in the mid-west in a UPS warehouse because of the inclement weather we were experiencing today. Delivery today has now been postponed to Monday. 

It has taken exactly two business weeks to obtain a prescription and I think that is preposterous! I've already begun drafting a letter in my mind to the Commissioner of the Dept of Health (unless anyone has a better suggestion) with a cc to the CEO of my insurance company,  the governor and I don't know who else. I will not let this fall on deaf ears either because there are people out there who cannot fight for themselves and probably don't get the proper care they need because the insurance companies take their sweet time in doing the very opposite of what they're supposed to do: help people! 

So here I sit, typing away with Ravi Shankar in the background reminding me to chill out, the world didn't end today as planned, and to be thankful that help is on the way and I soon will be kicking cancer's ass!!

Happy Festivus for the rest of us!!

Much love, 

eLiz.

My beverage. 

Me painfully sipping my disgusting beverage.

What I felt like for the rest of the day.

Chemowhaaa???

OK, we're making progress. I met with two oncologists last Friday and have decided that I will work with Dr. Keith Brunckhorst. Not only did he meet me on a day he typically does not see patients, he took my history, gave me a remarkably thorough physical and spoke with my mom and me, all within 2 1/2 hours and that's all for a $50 co-pay.  Did I mention that he personally called me Friday at 8:00AM to ask me if I was able to come in AND he worked around MY schedule? Unbelievable.

Key take away points:

• My cancer is estrogen-progesterone receptor positive. Like last time, this means my hormones are fueling the cancer. The pathology report still has not come back with the HER2 report, but more than likely I will be HER2 negative. (This would be good; HER2 poz means more aggressive cancer.)
• Because my cancer is hormone related, it's considered good because I might respond well to more hormone therapy.
• That last statement begged the question, then why didn't the five years of Tamoxiphen I was on work for me, especially when I had some pretty favorable odds that I'd have no recurrence for 10 years? Well, apparently my body resisted it. More than likely the "seed" broke off from my original tumor and planted itself in my lungs years ago. Chances are that had I even gone through the chemotherapy back in 2007, I still would have had this recurrence.
• Both doctors were disinclined for me to start with a hormone therapy program in lieu of starting chemotherapy ASAP. Sometimes these hormone therapies kill the cancer on their own, however, it's too late for me to test it out. Their effectiveness would not be determined for several weeks and if they didn't work, that's weeks I would've gone without a more surefire plan.

So, what is the plan?

Well, option one is fabulous. Take blahblahblah with a side of blahstuffstuff and the side effects kind of suck but may be managable. Option two is get an IV of cantpronouncethename with some whateveritscalled and the side effects get suckier. Option three is, get a port and take itjustkeepsgettingscarier with moreblahblahblah and you might go into heart failure and vomit, but you'll have no hair to pull back when your head's in the toilet and some other shitty stuff. By the way, Elizabeth, you'll probably get all of these treatments at some point during the rest of your life, we just don't know in what order.

I chose door #1. It's actually a PILL, the only chemo pill around (I think) and is called Xeloda (Zeh-low-dah) It works for three types of cancer, one being metastatic breast cancer (mBC). Remember, this is breast cancer that metastasized in the lung, it is not lung cancer. Typically it's taken twice a day after meals with water for 14 days, off for seven says, then back again for 14. Three times around is considered a full cycle. If I experience side effects, I immediately call the doctor and he will adjust the dosage. I will probably be on this medication (or some form of chemo), assuming it's working and side effects aren't horrific, indefinitely. I am not at all sure when hormone treatment gets thrown into the mix. The good news? I probably won't lose my hair and, for the moment anyway, I won't have to throw my body into menopause.

By Friday I hope to be approved for a Pet Scan. Assuming the cancer has not metastasized anywhere else in my body (start praying--yes, even you athiests), I can then proceed with the Xeloda. The Xeloda comes from some special pharmacy and I get to pay some special price, so special, the pharmaceutical company offers patients a special payment plan. Ain't that special.

Months ago when my super amazing, loving, shmoopy boyfriend, Sandy, learned I had my lumpectomy five years ago on Rosh Hashana, he said that was a bad move. I said why, I've been fine so far. Then I had my needle lung biopsy on Yom Kippur of this year, coincidentally five years to the day of my first surgery, and the results came back showing no cancer... See?? I'm fine!.. And then everything turns to shit right before Channukah. I've been pondering denouncing my religion all for the sake of my health, but when I explore my options I realize that the food isn't as good and I might start paying retail, and that just doesn't work for me either. So here I sit unwrapping gold foil chocolates  and spinning dreidels asking myself, how many hours after taking my chemo and water do I have to wait before I go swimming before I get cramps? (For you gentiles, that's a Jewish joke reference.)

The biggest take away I really got is, this is not curable, it's treatable. The hope is to get rid of the tumors spreading on my lungs and prevent more from developing. I'm being treated with palliative care, a term I used to think only referred to those waiting to pass in hospice. It's slightly terrifying especially if you read a lot on line. I've decided I will no longer take advice from Dr. Web MD, but rather only those doctors that actually see me in a blue robe with the opening to the back. There is progress being made all the time and there are lots of things (e.g. diet, exercise, cut back from three to two packs a day) I can do to help fight the C -word.

When asked how I am feeling, I sometimes weep, and I cannot predict when that might happen. Ask at your own risk. I still get a bit winded from the surgery. I'm not sleeping that well but when I do, my cough subsides. The cough is a symptom of the cancer and might go away when the cancer's killed off. If I happen to cough in your presence and you have a spare cough drop, I'll take it. Just not the melted one with a hair on it that's been sitting in the bottom of your pocketbook since the Nixon era. Got some bottled water? I'll take that, too.

I will do my best to update the Boob Blog on a regular basis. Please feel free to post comments or if you want to personally catch up, text and email is best until I'm no longer chalking (choking and talking simultaneously).

Thank you everyone for your well wishes, your thoughts, your prayers, your love, kindness and compassion. I'd like to thank my agent, the Hollywood Press...............damn, wrong speech.

With love and hugs,

Elizabeth

P.S. Thought you'd enjoy this video!
Post surgery, shopping in Wegman's with Sandy.

And, We're Back.

Dear friends and family, 

I've sadly got to report that as of late, my health has not been at its best. What started as an annoying cough a few months ago has led to my taking several x-rays and cat scans of my lungs, eventually one needle biopsy of my right lung and then thoracic surgery on my left from which I am recovering right now. The breast cancer with which I was diagnosed in 2007 has apparently metastasized into my lungs.

I'm working with excellent doctors at Lenox Hill now and will plan to meet with one or two oncologists within the next two weeks to confirm who I will use. Yes, chemotherapy is a must (no radiation).  Treatment will have to begin as soon as I am healed enough from this operation. 

The course of treatments (chemo cocktail and intervals) cannot be determined until the chosen oncologist has all of the reports. Assume I'll do some sort of treatment over six or so weeks and then maintenance treatments. The latter is something new to me. The medical field is trying to treat cancer now as a chronic disease. Keeping that in mind, the goal is to get rid of whatever cancer there is and prevent it from returning. With maintenance treatments, say, once a month for a couple of years, that goal may be achieved. Again, this is based on not yet having the dr outline the protocol as well as having to see how I react to the initial chemo. 

There are multiple nodules on both lungs. What the chemo should do is eliminate them. They'll be monitored to see that they shrink in size if not disappear and / or multiply. If after several treatments there are some nodules resisting the treatment, those might have to be surgically removed similar to how I had five removed this past week. The procedure is called a VATS wedge (video assisted thoracic surgery). Dr. Richard Lazzaro is a pioneer in this field and I feel blessed to have met him and will continue to work with him at Lenox Hill. It's not a fun ride, but after three days of hell, I now feel normal again.

I am a bit numb from all of this news. I knew something was going on but was believing it would be more like an infection that could be cured with some steroids. My chronic cough and results were resembling that of TB but I tested negative for that and so many other things like molds, fungus, Lyme Disease, Legionnaire Disease, etc. Although Cat scans were reading highly suspicious of metastatic cancer, I figured, I was given good odds of ten years of no recurrence from my last surgery, so it couldn't be that.

As with my last surgery I will probably update people via my blog or just email. It makes it easier to share the same information with everyone at once. Plus, my cough tends to get more persistent when I talk a lot. For a while I've been avoiding the phone at home just for that reason. 

The good news in all of this is that I have the most wonderful support team. If you're receiving this, consider yourself part of that team. This week I received so much love and healing from immediate family and friends and doctors and nurses that I feel like the luckiest person in the world. There are those who suffer through this or worse with no one around them, no good resources, no money, nowhere to turn. To me, I have already conquered half the battle. 

I'm sure you'll have questions, so please fire away. This is not a secret or something I am ashamed of. Like my first time around, I did as much research as possible to empower myself and in order to help others who might someday find themselves dealt these same cards. 

I am hopeful, I am eternally grateful and I am prepared to beat this with flying colors. 

With love and friendship, 

eLIZabeth

Recovering from surgery 

The gray diet menu

The gray food

Life Goes On

Hello One and All,

It's been a while, huh...

Nearly a year since my last entry. Since last October, I've had three excellent mammograms, including the one I had yesterday. I never got an article about my experience published as planned but I did learn that writing for women's mags is not what I want to do. I made it through one dance recital and I'm about to start preparing for another. There've been makeups and breakups, a job layoff, the landing of an even better job, a summer in the Hamptons, ups, downs, highs lows...the point is, Life Goes On.

I felt the need to write this after running into a friend, G, last Friday night. She told me that her friend, 45, had a double mastectomy and that she's not coping all that well. Seems that all of the stories she hears are negative ones and she's left with little hope for a positive future. (I am curious if it has anything to do with her living in a very remote area, potentially w/not the best doctors). I told G that she can assure her friend that there are many, many happy endings, as I've come to know some of the greatest, most powerful women (and men!) who are all doing exceptionally well. Many say they feel as if nothing ever happened.

I can't say the latter is true for me. I can't help but be reminded of my good fortune every night when I pop my little white pill. And it's not as if I had my appendix out. You don't look at your appendix every day. Your breasts? Well, they're seen every day in the shower, while getting dressed, being stuffed and shifted and moved around so they look just so. There's no avoiding them. I'm always reminded that I'm alive and well.

My two year anniversary of surgery is approaching--this Saturday, Sept 12th, which happens to be the day before the Susan G. Komen Race For The Cure.

(if you care to donate, it's not too late:

http://www.komennyc.org/site/TR/Race/race2009-wide px=1734359&pg=personal&fr_id=1170)

I'm running this year with just one thought in mind: That life throws you curve balls, but more often than not, it's not the end. It's just the beginning. Because Life Goes On.

Please take a moment to read the attached article featured in the Oct '09 issue of "Women's Day", written by my friend and fellow dancer, Bethany, whose writings I've posted in the past. This article is about two very special people about whom I wrote (and danced with) last October--a father and daughter who were diagnosed and treated together. Their story is one of inspiration and hope.

http://tinyurl.com/n9o7fp

So, I ask my friend G who I believe is reading this, to pass on good wishes to her friend. I know when I see that blanket of pink in Central Park on Sunday, there'll be every reason why I should do so.

Love to you all,

Liz

Father +Daughter Share Pink Ribbons

Hi all,

Below is a link about Arnaldo and Vanessa Silva, a dad and his daughter, who both discovered they had breast cancer at the same time. I've mentioned them before in earlier blog postings. What the video fails to mention is that Arnaldo lost his sister to BC. So after he was diagnosed and tested positive for the BRCA2 gene, that's when Vanessa thought it was best she get tested as well.

http://abcnews.go.com/Health/story?id=6043173&page=1

I'll have the privilege of dancing with these stars at the October 25th recital.

Please take a moment to hear their story.

Best,

Liz

One Small Step For Woman...Giant Leap for Mankind...

OK, so it's coming up... my first dance recital. Feeling a combination of calm, nervousness and excitement. I'm attaching the invite for the details. Seats are assigned so sooner  you buy, better the seats.  And if you can, come early for the silent auction. Proceeds go to the Helen Sawaya Fund, which is how I got to do this dance recital in the first place since it helps support patient programs for survivors, amongst many other things. 

Since I last wrote, I've done the Susan G. Komen Walk, which in just three or four short days of fund raising brought in a fair amount of money. I'd like to thank everyone for his/her donations. I'm not even sure of the final total yet b/c as I understand it, some donations were made and I have not yet received acknowledgment of them. 

I'm sure there's no need to remind you that October is Breast Cancer Awareness Month, so if you haven't had your yearly mammo, please make your appointment now! 

Lots of love!

Liz