the final word on nutrition

I've been steadily gaining weight since I started these weekly Taxol treatments ... 15 lbs. since the beginning of February ... all thanks to the steroids given to me weekly with my chemo cocktail. The pounds will shed, I'm told, as soon as I'm done with this treatment regimen. This week I'll have eight rounds completed with four more to go. In the meantime, I've completely given up on counting calories and watching carbs. Fortunately, I'm eating a whole lot more fruits and vegetables ... unfortunately, I'm just eating a whole lot more of everything else too. I am ALWAYS HUNGRY.

So for those of you who watch what you eat, here's what I believe is the final word on nutrition and health. It's a real relief to know the truth after all those conflicting nutritional studies.

1. The Japanese eat very little fat and suffer fewer heart attacks than Americans.

2. The Mexicans eat a lot of fat and suffer fewer heart attacks than Americans.

3. The Chinese drink very little red wine and suffer fewer heart attacks than Americans.

4. The Italians drink a lot of red wine and suffer fewer heart attacks than Americans.

5. The Germans drink a lot of beers and eat lots of sausages and fats and suffer fewer heart attacks than Americans.

CONCLUSION:

Eat and drink whatever you like. Speaking English is apparently what kills you.

Cat Fight ... MEOW!

There seems to be a cat fight brewing on the message board of my online support group. Usually, everyone is very sweet and supportive ... people will chime in to answer questions or give words of encouragement ... basically, we lean on eachother. But as with any group, from time to time there are flare ups of emotions and people will express opinions that inadvertently (or not so inadvertently) hurt other people's feelings. I'm staying out of it.

To summarize, it all began with a post entitled "Sheryl Crow is pissing me off ... sorry, a vent." The author expressed her feelings with regard to Sheryl Crow's guest appearance on Larry King Live the other night to discuss (with several other guests) the recent news of Elizabeth Edwards' recurrence of cancer. Essentially, the poster felt it was inappropriate for Ms. Crow who "only had Stage 1" cancer (an early stage) to have any comment for a woman who is now dealing with an incurable Stage 4 cancer. She went on to state that it angers her that the media gives so much attention to Sheryl Crow as a spokesperson for breast cancer because "she gives women false hope that the bare minimum treatment is okay." The sentiment either was or was interpreted that because Ms. Crow had DCIS (ductal carcinoma in situ -- cancer which is confined to the milk ducts and has not spread), did not undergo chemotherapy, did not lose her hair or her breasts, and "only had a lumpectomy and radiation," she did not suffer as many others with breast cancer have.

This generated a flood of angry responses from other women in the support group who were also diagnosed at early stages or earlier than others. One comment went like this: "I cannot know the demons you have faced, but you don't know the demons that others have faced. To imply that one struggle with bc is more noble, honorable, important, difficult, or significant, belittles every other one. A 'stageist' thinks you haven't really suffered if you aren't at their stage or higher. I guess there will always be some women who feel that way. Some will voice it and some will keep mum about it. And others just aren't like that at all and freely care about the struggles of all survivors no matter how early or late their disease was discovered." Another commented, " I 'only' had a lumpectomy, radiation, and take tamoxifen, too. I still have to deal with the fear of recurrance every day, and no one is going to tell me I am less of a 'survivor' because I did not go through chemo or a reconstruction."

I think everyone is feeling rather on edge because Elizabeth Edwards reminds us that metastatic disease can happen to any one of us ... with absolutely no rhyme nor reason. We all have the same fear no matter the stage at which we may have initially been diagnosed. It's evident to me that even among the most supportive, cohesive groups ... like Breast Cancer Support groups ... lines are always being drawn ... consciously or unconsciously. Maybe it is human nature to do so? Part of our innate, fundamental darkness? Stage 0 vs. Stage 1 vs. Stage2 vs. Stage 3 vs. Stage 4 ... Mets to the lung beats Mets to the bone ... Mets to the liver beats Mets to the lung ... then, brain Mets trumps them all! The problem is when we start to assign "worthiness" to different sub-classes of this shared horrible experience. There's no such thing as having a little bit of cancer. It's like being a little pregnant!

Nevertheless, there is one woman in my group named Tammy Lou who always has just the right words, just the right quips, and just the right sense of humor. (Despite numerous failed attempts she has had at reconstructing her breasts -- reasons too complicated to explain here, she continues to maintain a positive and hopeful view of her circumstances.) Eventually, she mediated the entire argument and brought this cat fight to an end with the following response:

"We just met this past weekend and now I find myself wondering if you hate me because I didn't lose my hair like you did?" (quoting Michelle)

Yes, I hate you.

I hate you in the same way that I hate the "naturally skinny" women in the world who eat bowls and bowls of ice cream and never get fat.

In my imaginary mind, those women are not "real" people.

AND, I hate all of the women who had reconstruction and walked out of the O.R. with picture perfect breasts.

I do.

It's not a pretty thing.

It's grief and envy and all sorts of normal human emotions.

But, it isn't real.

And, I don't really hate them or you.

I'm just angry and upset and I say things that I don't really mean because it is easier than facing my own grief. Alone.

If I am "mad" at you for whatever reason, then I am not alone.

You are with me.

It is much easier that way...when I am not so alone.

Love,tl

P.S. A very wise woman once said, "Your mumps does not make my measles better."

Hypothetically.

Oh, Obama!

Alright, this obviously has nothing to do with breast cancer, but meeting Barack (the future President of the United States) at a fundraising event in Palm Beach today was the highlight of my entire weekend!! He gives me so much hope that there is an end in sight to this dreadful nightmare we've been living the past 6 years. (:-) The room was filled with about 800 supporters. We were ENERGIZED not only by the substance of his words, but by what seemed to be a sincere expression of his deepest desire to do what is right by the people of this country. I love him!

Here are a few more of my pseudo-paparazzi shots:

Almost looks like he's cussing, doesn't it?

"What do I think about George Bush? &#$%@ HIM!"

(Kidding ... my words ... not his.)

Hee Hee!

Serious autographing going on here ... "The Audacity of Hope." Get it, in bookstores now!

Any closer and I could have filled his cavity. You know I really feel I missed my calling in dentistry anyway.

Now this little girl SANG the Star Spangled Banner!

Elizabeth Edwards

Why do bad things happen to good people?? Specifically, why cancer??? This is truly a tough thing to understand. I was driving to my 7th Taxol appointment this afternoon listening to CNN when the press conference discussing Elizabeth Edwards' recurrence with breast cancer came on. It just took my breath away. I couldn't believe it.

I haven't cried very much since hearing about my own diagnosis, but I literally had to choke back the tears on this one. I think what moved me the most was how she and her husband are handling this situation with such openness, courage, and grace. When I came home to see the actual news conference, I cried some more. Edwards has put such a brave and optimistic face on such frightening and disturbing news. There is no cure for her condition now, only treatment to sustain her the rest of her life. My heart truly goes out to them and their entire family.

For those who haven't kept up with the news, Elizabeth Edwards (wife of democratic Presidential hopeful, John Edwards) battled breast cancer in 2004 and in just a little more than 2 years, she has been diagnosed at Stage IV with metastatic disease to the bones and possibly her lung. Doctors don't yet know exactly how widespread her returned cancer is, beyond a small but definite spot found in her right rib after she coincidentally broke a rib on the other side. They are also awaiting test results on a suspicious spot in her lung.

It is not uncommon for women to experience a recurrence within five years of an initial diagnosis, and that's why reaching the five year milestone is regarded with so much relief by many survivors. Breast cancer is very complex and heterogenous ... it is so different in so many women. That is why the treatment protocols can vary so much from person to person depending on certain factors. Chemotherapy is designed to kill cancerous cells and we are always encouraged when there is no cancer found in close by lymphnodes. However, microscopic cancer cells not necessarily destroyed by chemo can still travel through the vascular system (i.e., blood stream) to other organs. That is why additional protocols such as radiation, systemic hormonal therapies for hormone positive individuals, and drugs like Herceptin for aggressive cancers after chemo have a place of importance. One thing is sure, this disease loves to migrate to certain organs when it's given an opportunity to metastasize. Mets to the bone, liver, lung, and brain are among the most common organs to be affected.

In a 2004 People magazine article, Edwards, 55, said she first noticed a half-dollar-size lump in her right breast on Oct. 21, 2004. She told the magazine that she had not had a mammogram since the birth of her son, Jack, 4. Most experts agree that annual mammograms for women in their 50's reduce the risk of dying from breast cancer. Although she had been diligent in getting mammography in the past, she said life just seemed to take over and she didn't get around to it. When a sonogram Oct. 29 suggested that the lump was malignant, she called her husband on the campaign trail to break the news, according to People. A needle biopsy Nov. 3, the day after the election, at Massachusetts General Hospital confirmed that Edwards had invasive ductal carcinoma, the most common type of breast cancer.

I am really curious with regard to her hormone status and what type of chemo treatment she was undergoing before. I read somewhere that she had had mega fertility treatments at the age of 50 to conceive her two youngest children. I would imagine that the hormone treatments would not have been a big issue if her cell receptors were not receptive to hormones in the first place. But, if her cell receptors were hormone positive, would the fertiltiy treatments have increased her overall cancer risk? I have heard that EVERYONE has cancerous cells in their bodies, but most people's immune systems have the ability to eradicate them before it ever becomes what we know as cancer. But for those of us who have fueled cancer with synthetic hormones or other environmental factors of which we may be unaware, getting rid of these cancerous cells is more of a challenge for our lymphnode and immune systems.

As you can imagine, for every woman who is currently battling or has battled breast cancer in the past, news like this makes your heart shutter with fear. Even with all the wonderful advancements in the way of treatment and the faith you have in your doctors, you obsess about whether you're doing or have done enough to be aggressive in the face of this disease. It feels like such a crap shoot at times! And truthfully, as my surgery date approaches, I have a tendency to vacillate about whether I am doing all the right things for myself. Breast conservation seemed soooo important to me above almost everything else at the time of my diagnosis. Now with more time to think and more time to have researched reconstruction options, I waiver back and forth about whether I should be doing a mastectomy (including a prophylactic one of my good breast) instead of lumpectomy and radiation. Yes, how many times have I said I love my boobs? But I know if I ever had a recurrence (something I try not to dwell on for very long), I wouldn't think twice about taking these breasts off. And who the $%&@! wants to do chemo all over again?? Ugh!

As Elizabeth Edwards well knows, this is not a road you can travel alone. Breast cancer has a way of bringing together an amazing community of women who find eachother through this common experience. Moreover, I have met some of the kindest, compassionate people who have endured this disease. It seems so incredibly unfair on the surface. But spiritually, I believe our experience is designed to allow others to be a witness to all the good things that can come from it, including miracles and what we see in our supporters.

BC is the great equilizer because of the same fear we face ... we all fear the beast! And while I obviously don't know Elizabeth Edwards, I feel as though she could be my friend in the fight. I suspect that what is terrible for her on a personal level (and I wouldn't wish this on anyone) will ultimately be good for us as survivors. She will bring to light the issues, and she will be relatively public (she has already written a book about her fight with breast cancer), and if we're very, very lucky she will be outspoken about the need for funding etc.

Funding to the National Institutes for Health, specifically for cancer research, has been cut dramatically by this current administration. This is not a statement designed to divide us politically ... it is not about liberals vs. conservatives but rather about the way our government prioritizes support for cancer research and treatment. And it is my hope that as political figures in a prominant, public forum (whether John Edwards wins the Democratic bid or not ... the election is irrelevant because he and his family have become part of the news focus right now), they will be personally inclined to support cancer programs, and perhaps they can return funding to its original place or even push for increases. (Personally, my money is on Barack Obama, but I digress here.) This disease just takes so much from women and their families. The funding to find a cure that afflicts 1 in 7 women in America is just so essential.

In any event, I truly admire Elizabeth Edwards for her strength, grace, and poise given this shocking news. But at the same time, I'm not all that surprised. She will fight the good fight ... and she really does get it. Cancer is a word, not a sentence.

Chemopause

It's official ... chemo has now put me into a chemically induced (temporary) state of menopause. This was expected with chemo, but because it seemed my ovaries weren't going down without a fight all these months I was in denial that it would actually happen. (Denial is afterall my best coping mechanism .... deny, deny, deny until I HAVE to face what I can simply no longer deny.) What this means is there is a decrease in the levels of estrogen and progesterone my ovaries normally produce. Because my tumor ... sorry, I mean "the" tumor (since I refuse to claim ownership of it) is hormone receptive, the decreased levels of estrogen will not feed THE tumor's growth. This, of course, makes my oncologist very happy. And that makes only one of us. (I'm not happy about losing my period, even if it is only temporary ... it's the one sure sign that I'm still fertile. And I have been provided no definitive time frame for regaining it, although it is expected to return anywhere between a couple months following the end of chemo to possibly a year or so. It just depends on one's body and whether one is close to their natural time for menopause. It just adds more stress than I really want to entertain.)

Moreover, I just realized what I've been experiencing for the past two weeks (after missing my period last month) are hot flashes! Ugh. I didn't even know what they were. I went to D.C. two weekends ago for a conference sponsored by the Young Survival Coalition and Living Beyond Breast Cancer, but I stayed with my girlfriend, Carmen, who lives nearby in Alexandria, VA. It was probably around 30 degrees all weekend and it snowed. Although Carmen had the heat up at her place, I initially thought it was a bit cool for my personal taste. (My ambient room temperature is 76 degrees and usually anything below 70 makes me feel like I'm freezing. Hey, living in Miami will thin out anyone's blood.) In order to sleep comfortably, I put on sweatpants, a sweatshirt, and socks before getting under a thick, warm comforter. At one point, I woke up during the night wondering who the hell suddenly turned the thermostat up to 90 degrees??? I was burning up! I kicked off the comforter, took off my socks, and stripped off my sweatshirt to get some relief. Half an hour later, I was FREEZING again!

Similarly, at the Conference I found myself breaking out into sweats at times. I just figured some of the seminar rooms were hot ... and the fact that I was soooo excited to finally wear the tall, furry, COACH boots I bought during a sick sale in NY last year only added fuel to my existing internal fire. (It was a terrific conference, by the way ... I finally had the chance to meet so many of the incredible women from my online support group in person and the discussion panels were very, very informative and empowering.) Still, I was burning up my entire stay in D.C. I finally realized when I made it back to Miami that my hands and feet were always hot, even if my skin felt cool. Weird.

So to finally bring you up to speed on my treatments, here is the latest. I have now completed 4 of 12 weekly Taxol treatments which I typically get on Fridays. There are less side effects with Taxol (as opposed to Adriamycin and Cytoxan -- A/C) ... no nausea, no loss of appetite, no funny taste in my mouth. However, I seem to have a bigger appetite with the weekly steroids that are given to go with ... so now there is weight gain and belly fat to compliment things. Taxol can also produce bone/joint pain because it works on the bone marrow. To offset these effects, I am taking Vitamin B-6 tablets daily as well as L-Glutemine, a tasteless powder that I put in juice or water. It seems to help a great deal as long as I take these things consistently. I actually forgot to do both following my first Taxol treatment ... I was distracted by Superbowl activities that weekend and was surprised by how much energy I had following the treatment. I paid the price on Monday when I woke up with a stabbing, shooting pain in my lower spine and left rib cage. Tylenol with codeine couldn't even provide me any relief! I've been taking my vitamins and powder religiously ever since!

One additional note ... I did experience a setback with Taxol three weeks ago when, for the first time, my white and red blood cell counts dropped very low. My onc was rather surprised as she would have expected my counts to be more adversely affected by A/C, but I never required the Neulasta shot before. As a consequence of the low counts, I had to get Neupogen shots 3 days in a row to boost the white counts and one Araspen shot for the red ones. I took those needles in my belly (i.e., my belly FAT) which wasn't so bad, but the medicine stung like hell. I learned on the last day of shots that much of the sting can be avoided by warming up the vial in your hand FIRST. The fun just never ends with breast cancer.

I will hopefully complete my Taxol treatments the first week in May (if there are no more setbacks with low counts). Then, surgery approximately three weeks later will follow. I am looking forward to finally being able to say, "I HAD cancer!"