I have been MIA but not for lack of stuff to write about. I sometimes get paralyzed by the thought of all the things I want to share and then this turns into avoidance, which turns into self-criticism, which turns into my own little pity party, then a pep rally and then some force takes over me and I finally sit down to write. There's been a force. But before I delve into that, I'll catch you up on the status of my health. For if not for that, there'd be no Boob Blog!
On January 29th, yes nearly two months ago (trust me, there was a lot of self-criticism!), I had my last Paclitaxel IV treatment.
It was a great day, what I remember of it anyway, because quite frankly, I'D HAD IT. My veins were no longer cooperating, I'd blown one a couple weeks prior (I still have no sensation in the injection site), and I was tired of being constipated, bleary eyed and nauseas. Plus I knew, I JUST KNEW, the following week's scan was going to be good, at the very least status quo. For those tuning into the Boob Blog for the first time, the two prior scans showed the metastatic breast cancer tumors in my lungs were shrinking so I was hopeful.
On Monday, Feb 3, just one day after Punxsutawney Phil warned us there'd be another 2000 feet of snow, AND, I'd won my first ever Super Bowl pool (Cha-ching, $250 big ones!), I'd dragged my sorry butt outta bed at 6:30AM, imbibed two bottles of banana chalk flavored barium sulfate (aka Fartbag Cocktail) and got a CT scan of my lungs and abdominal area. One day later the results came in and sure enough they were good. The tumors did not shrink, but they didn't get larger (with the exception of one that possibly could've been misinterpreted on the scan). The tumors didn't decrease in number, but there were no additional tumors. Everything was status quo. BAM!!
The following Monday, February 10th, my loving beau escorted me to Dr. Brunckhorst for the first of three painless injections of Lupron in my butt. Although it appears by my symptoms that the past year of chemo has put me into menopause, to be certain, since my cancer is estrogen receptor positive, this drug is administered to shut down the production of estrogen in my ovaries. In addition to these shenanigans I began taking an aromatase inhibitor (AI) called letrozole, brand name, Femara. In addition to the ovaries, estrogen is produced in the adrenal glands. The letrozole inhibits the enzyme in the adrenals (aromatase) from producing more estrogen (or, the sex hormone androgen). Less sex hormones = menopause. The most common side effects of these drugs are hot flashes (check), hair loss (too late!), (excruciating) pain of the joints, muscles and bones (check, check, check!), tiredness, excessive sweating, nausea, dizziness, and trouble sleeping. Waiter, CHECK PLEASE!
After two weeks of being on the letrozole, I could barely get out of bed and stand straight. Of course I did but the joint pain (arthralgia) was so awful and the last thing I wanted was to get hooked on pain killers. For the record, my limited research shows that the lives of others in my boat was compromised such that several became non-compliant and just stopped taking the drug way before the recommended five year period. I don't want to do that because my only other alternative is to go back on chemotherapy. My doc gave me permission to go off of them for a few weeks to see if the pain subsided. It has only somewhat leading me to believe that the pain was a side effect of both the pills and the injections. I go for my third and last injection next week so I'm hoping once the lupron leaves my system I will only have to deal with the pain from the pills, which I have not yet resumed taking. There are two alternative AI's however anastozole (brand name Arimidex) doesn't target the estrogen as much as letrozole and the the other, extemestane (brand name Aromasin), is a steroidal drug that can create resistance to the anti-estrogenic effect. Now, it is possible, that when I start taking the letrozole again it won't bother me as much as it initially did; the doc said this can happen. The proof'll be in the puddin.
Another negative side effect of all of these drugs is bone loss so I must be monitored for that. I'm guessing in another month I'll have another CT scan to check on the status of the tumors and probably I'll have a bone scan. (I don't know how else bone loss is monitored. There's a whole other education that awaits.) In the meantime I'm taking calcium, magnesium, fish oil, vitamin D, hot baths in sea salts and the occasional ibuprofen. I've been going once a week for acupuncture with Dr. Yamaguchi who I really like and respect, but I've no idea if it's helping (perhaps I'd feel worse if I didn't go to him?). At a $110 a visit I go in thinking that I'm being healed and if anything I take a quality nap. There is research that shows acupuncture helps so I'm not pulling this out of thin air. As for weight bearing exercising to help strengthen my bones, I can barely lift a three pound weight without my wrists and fingers screaming for relief.
Ahhhh, good times.
Ok, for some good news... My breathing had gotten really bad for a while despite my lungs sounding clear as a bell. It wasn't until a couple of days ago that I realized I haven't been getting short of breath like I used to. I attribute this to the chemo leaving my system. A few months ago I met a woman who told me that six weeks from her last chemo treatment her hair starting growing in. Sure enough, at six weeks, the patches of hair that would not grow at the rate the rest of my hair would, started filling in. I actually have my hairline back and I've been busting out the mascara for my lashes! It seems like six weeks is the "magic number". If you know others going through chemo, I would share this six week marker with them just as I would the three week marker of one's hair falling out. When you have cancer you constantly want to know next steps and what to expect; it gives you some sense of control. This little bit of info might help.
There's been a lot in the news lately, and by news I really mean by way of social media, about body image. Finally people are grasping that the images seen on the covers of the glossies are unobtainable simply because they are not real. Even the "prettiest" (in quotes because it's a subjective term) models' photos are Photoshopped because really, are you going to reach for the magazine that shows you how to encourage cellulite, split ends and skin damage rather than eradicate it? There are funds being raised for the production of an average size Barbie-like doll called Lammily. There are ad campaigns (e.g. Dove) featuring "real" women. And lest I forget to mention Lena Dunham and all she's done for re-shaping women's body images? (I love Lena's work, her perseverance, her attitude, her gumption and even her new haircut. I just dislike her stylist assuming she even has one.) I was always told looks only matter so much but in spite of my mother always telling me I'm beautiful and Gloria Steinem paving the way for women, I always found myself comparing myself to others on some superficial level. Someone was skinnier, prettier, and had nicer clothes and if I had what "she had" I'd be happy. Or so I thought. The truth is, even in a society that rewards better looking people with higher salaries, more attention, etc, if you have and show your confidence, that's what puts you ahead of the rest. But it took years, and I mean YEARS for me to get it emotionally vs intellectually. In my dirty 30's it started to "click." Then it really clicked in my naughty 40's probably because at 40 I was diagnosed with cancer and my breasts were regularly poked, prodded, smashed and a topic of discussion. I couldn't hide behind my examination gown. I was OUT THERE. Where am I going with all of this?
I turned 47 this year. It wasn't too tough a number for me --I find the 9's to be the worst...29, 39...I am a happy woman in her mid-40s. For a dig, my boyfriend would say, Liz, it's your late 40s. OK. I'm in my mid to late 40s. One expects things to change with her body at this age especially if she doesn't work out too regularly and follow a regimented diet and takes drugs that wreak havoc on just about everything. I can deal with some change. But I swear, and I think I've said this in other posts, I feel like I've stepped into the skin of another human. I recently on Facebook morned the closing of Loehmann's. Loehmann's has a special place in my heart, not just because it had great discount shopping, but because back in the day when the discounts were far greater for quality designer clothes, I'm talking Halston, Calvin Klein, YSL and the like, I was shopping with my mom at the store in Hewlett, L.I. At about ten years old she'd point out the great designers, how to recognize good quality from bad and how having a good seamstress is essential to your clothes fitting best. We'd take piles of garments into the fitting room and sometimes she'd send me out with an article of clothing to find a match. Elizabeth, go find me a few pairs sof navy blue pants in a size 6 that will match this top. It was great fun to go on these missions (today a mom would fear her kid being abducted) and see the look of satisfaction on my mom's face if I came back with "a winner." The Loehmann's open fitting room culture was eye opening to me. Not only was there a variety in women's tastes in clothes, there were myriad body shapes and sizes, too. Tall, short, wide, pear shaped, apple-shaped, there was bra-fat, pre-Spanks big underwear, girdles, cellulite, varicose veins and so on, non of which applied to my mom who always maintained a great figure and literally looked amazing in everything she wore. Now? Now I am one of those women I used to stare at in the Loehmann's fitting room with bewilderment.
There's only one breast cancer "chat site" I look at somewhat regularly. It's called Team Inspire and I look at it only to search to see if women are experiencing similar side effects as me; the rest quite frankly is depressing. One day a woman posed the question, Am I Vain? She wrote, "I am having a bit of a struggle with the changes to my appearance from chemo. I know that my biggest concern should be the cancer itself, but I no longer recognize myself in the mirror, and it is getting to me." There were hundreds of (supportive) responses to this and it seemed everyone felt the same discouragement with their physical changes and was eager to share their beauty secrets (e.g. how to re-create eye brows). I tried my hardest to convince the group it's ok to forego a wig and wear a great pair of earrings and red lipstick, but I don't know how well this translates in Petticoat Junction, USA. What I really struggle with the most is growing (read: busting) out of almost everything in my closet. I grab one of my favorite tops and when I hold it up it looks like it would fit an infant. Did I once fit in this? Did someone accidentally boil this in hot water and dry it on high heat for an hour? I get annoyed with myself for getting fatter and mushier (vs. voluptuous and Rubenesque) and when someone says my face looks full thinking that's a good thing to say to a cancer patient, I. Want. To. Wring. Her. Neck. And then something happens. I FINALLY find a top I'm comfortable in, I slap on some makeup and jewelry and I go outside and realize, today's going to be a good day. No one really gives a shit if I am heavier, those who care are just happy I'm doing well. And then I am happy I am doing well.
A few weeks ago I really did get down about what I'm sharing. Sandy and I were going out for dinner and I simply could not get dressed. Everything I put on was a disaster (in my eyes), tight and ill-fitting and I was embarrassed to walk out the door. I'd reverted to being a teenager. I didn't cancel our dinner plans because that would be wrong to the others (and make me a loser), but I really wanted to. I wanted to roll up in a ball on my couch and feel sorry for myself. The next morning at about 4:00AM I couldn't sleep. I was looking for something on the internet and I came across http://www.jenniferpastiloff.com I knew nothing about her but apparently her inspirational yoga classes and retreats sell out regularly and she was coming to NYC. Having only taken about three yoga classes in my life, I decided to sign up for this one because the requirements were to show up with a pad and pencil and a sense of humor. My friend Dana indulged me and she signed up, too. We went to Pure Yoga on Friday night at 7:00PM, both of us tired and achy (Dana has a bad hip), teetering on canceling and tossing $30 out the window. But we went. And were we happy.
There were about 25 women 90% of which, including Jennifer, were wearing tight LuLu Lemon outfits and looked like they do yoga and take spin five times a week. I was in a 25 year old MS Walk T-shirt, a tired sports bra and worn out sweatpants trying to mask my new improved muffin top. I positioned myself next to a wall because I knew I'd have to hold on to it in order to even attempt half of the exercises. When asked to kick our leg high in the air, mine was about six inches off the ground. When asked to do a plank for 30 seconds, I lasted about ten. Half the time I was in child's pose, my favorite position since all you have to do is lie there and stretch. One of the writing exercises was to write down on a Post-It what we were manifesting that evening, then stick the Post-It anywhere in the room. A few minutes later you had to take a Post-It other than your own and for the rest of the night, you had to hold that Post-It close to your heart and manifest for some stranger in the room, what she wanted (secret: I purposely took Dana's). The idea was to share of yourself and take for your self. Give and receive. It's so simplistic and I have to say it really works. We did some Karaoke yoga (Phil Collin's In The Air Tonight), which literally brought me to tears as we were belting out the chorus and at the end of the evening we did some major sharing. We had to write down what we would do if fear didn't hold us back. No one expected that our thoughts would be read aloud. One of my shares was that I'd be doing what Jennifer does--going on tour (don't ask me where) inspiring people to stay positive despite given a diagnosis of stage four cancer. (My new slogan: You have breast cancer. There is no death in that sentence). In Jennifer's case, she recovered from years of battling anorexia and striving for perfectionism. Jen's slogan? It's OK to fall as long as you laugh. It was a Friday night in New York City and two dozen of the most beautiful, powerful women were in the same room sharing their fears. Some cried, some hugged, some laughed. It was a very touching experience and Dana and I both left exhilarated. No matter what our size, hairstyle, athletic ability, we were all rock stars.
And for the next week I couldn't stop thinking of this class and what it means to hold your head high, give in order to receive, and constantly reach for the stars. I was in so much pain from the exercises that I had to tell Sandy, Stop making jokes. It hurts too much to laugh.
And that, my friends, was the force that finally got me to write today.
Love and hot dogs (Hey, why not?!),
|With Kelly Turner at her book launch / signing of |
RADICAL REMISSION: Surviving Cancer Against All Odds
It just made the NY Times April 6th Best Seller List!