SPRING, TAKE 2

I just discovered a wonderful children's author and illustrator named Karla Kuskin (1932-2009) and had to share her riff on Spring. 

Karla's take on writing echoes my own. In her biography for Scholastic, she writes, "Trying to get a story or poem just the way you want it is hard work. I spend a great deal of time re-writing. But I am very happy, working in my room at my desk ... pushing words around. So I just keep at it." 

Same can be said of our struggles in life, whatever they may be; it's hard work, and we spend a great deal of time on it, but we just keep at it. Because we gotta. 

Here's to Spring, and to Ms. Kuskin.

(copyright 2012 theBigCandMe)

SPRING 
By Karla Kuskin
I'm shouting
I'm singing
I'm swinging through trees
I'm winging sky high
With the buzzing black bees.

I'm the sun
I'm the moon
I'm the dew on the rose.
I'm a rabbit
Whose habit
Is twitching his nose.

I'm lively
I'm lovely
I'm kicking my heels
I'm crying "Come Dance"
To the fresh-water eels.

I'm racing through meadows
Without any coat
I'm a gamboling lamb
I'm a light leaping goat.

I'm a bud
I'm a bloom
I'm a dove on the wing.
I'm running on rooftops
And welcoming Spring!

DANCING WITH DAFFODILS

After a winter of discontent, a shout-out to the first day of spring is in order. May this fresh new season help you drop whatever extra weight you may be carrying (physical, mental, emotional — or all of the above!), and support you in keeping calm and carrying on.

Here's a little ditty from 1804 (thank you, William Wordsworth). Happy Spring!

(copyright 2012 TheBigCandMe)

THE DAFFODILS
I wander'd lonely as a cloud
that floats on high o'er vales and hills,
When all at once I saw a crowd,
a host, of golden daffodils;

Beside the lake, beneath the trees,
Fluttering and dancing in the breeze.

Continuous as the stars that shine
and twinkle on the Milky Way,
They stretch'd in never-ending line
Along the margin of a bay:
Ten thousand saw I at a glance,
Tossing their heads in sprightly dance.

The waves beside them danced; but they
Out-did the sparkling waves in glee:
A poet could not but be gay,
In such a jocund company:
I gazed — and gazed — but little thought

What wealth the show to me had brought:

For oft, when on my couch I lie
In vacant or in pensive mood,
They flash upon that inward eye
Which is the bliss of solitude;
And then my heart with pleasure fills,
And dances with the daffodils.

HONORING MARY

Another bright light has been extinguished by breast cancer.

MARY (aka MBJ on BCO) has died.

Doctors gave her four months. She was gone in six weeks. Her passing has left the online breast cancer community at a loss for words.

Cancer is some scary sh*t.

I feel a need to honor this lovely woman who was so generous in spirit and insight; who always had a kind word to spare no matter where you found yourself on the breast cancer path; who so readily shared her own pain in the hopes that it might help others. And she helped so many others.

Mary was just two years out from her initial breast cancer diagnosis when she developed constant shoulder and arm pain. Several doctors told her she had a frozen shoulder; another said she had nerve damage. Mary herself suspected that maybe she tore a muscle or ligament. She received cortisone shots and some physical therapy, but the pain never went away.

Mary was also uninsured. She waited months for an MRI appointment (which, ironically, is tomorrow). When she was finally (correctly) diagnosed in early February (yes, just last month), doctors sent her home with hospice. She died six weeks later. She never had a chance.

But you do.

If there is a lesson in this loss (and dare I say this may well be Mary's legacy), it is this: If you have nagging pain, get it checked out. Now. Doesn't matter if you have cancer or are just afraid you might. Our bodies are very wise. They talk to us all the time; but we don't always listen. And even when we do, sometimes the medical profession doesn't. Sometimes, they get it all wrong. Like they did with Mary.

How can we honor her life? By listening to our bodies, speaking out on behalf of our discomfort, and not taking no (or "I don't know") for an answer.

And listen to your gut. If what you are hearing from a health care professional doesn't sit well with you, keep shopping — until you hear something that does.

R.I.P. Mary. (To hear her lovely singing voice, visit the website her husband created for her here.)

WANTED: YOU!

Periodically I comb through Dr. Susan Love's Army of Women current research projects to find a few broad-based studies that are easy for people to participate in. My goal is to entice you to get involved in one. (Or two!) Taking a simple online survey doesn't take much of your time, it doesn't cost a dime, and it has the potential to help a great many people.

Of course, you can also donate money to a respectable organization that is putting its dollars directly into breast cancer research — and lord knows we need that, too — but guess what all researchers need even more than moola?

Study participants! Women with breast cancer! People like you and me! Lots and lots of them!

There is power in them thar numbers. Put it to good use by checking out one of the studies below. (If you don't remember if you have participated in any of them before, no worries; just click on the Yes! Sign me up! button on each study page. If you get a "According to our records, you have already submitted an RSVP for that project. Thanks!" Well, then, thanks! 

(PS: KNOW SOMEONE WHO MAY QUALIFY FOR ONE OF THE STUDIES BELOW? PAY IT FORWARD AND FORWARD THIS POST. PLEASE!)

• Boston University's Phase 2 study of the Variations in Health Needs of BC Survivors needs 600 women within the U.S.A. to take part in a telephone survey. The research team will assess the health and well-being of women who have any of the following: recurrent breast cancer, metastatic breast cancer, a recent diagnosis of breast cancer, an additional invasive cancer diagnosis, or you are currently undergoing treatment. The information gathered from this study will be used to develop programs and services for women with breast cancer.
• UCLA's Latina Breast Cancer Initiative is looking for 150 Latina/Hispanic women in the U.S.A. who have been diagnosed with breast cancer for the first time — at any stage — within the past 12 months. This telephone survey is in English or Spanish (your choice) and will look at the psychological impact of breast cancer.
• Washington University School of Medicine's The Breast Cancer Risk in Young Women Study (which I first blogged about here) is looking for a total of 5,000 women across the U.S.A. and CANADA who were diagnosed with invasive breast cancer — at any stage — at age 40 or younger. It doesn't matter how old you are now. It also doesn't matter what stage of treatment you are currently in. All you need to do is submit a blood sample, which can be drawn at your next doctor's appointment. You will be sent a kit that includes shipping materials and all of the documentation your doctor requires to draw and ship your blood to the research staff. There will be no cost to you and you don't have to handle anything icky.
• The University of Louisville Brown Cancer Center's The Breast Cancer, Uterine Cancer, and YOU Study (which I first blogged about here) is an online survey for U.S.A. participants that looks at whether a woman who has been diagnosed with breast cancer at any age or stage (including LCIS and DCIS) is at higher risk for developing uterine cancer.

ENGAGING INTUITION

"You have to leave the city of your comfort

and go into the wilderness of your intuition."

—Alan Alda

(photo ©2012 TheBigCandMe)

HIGH-PROTEIN FOODS FOR HEALING

Since protein promotes proper healing, it's important to eat enough of it — that means 100 grams a day if you are actively healing. That may seem like a lot, so to help you do that, I've compiled a list of my favorite high-protein foods along with the number of grams of protein each serving contains. (I buy organic whenever possible.)

NOTE: I did not include protein shakes in my list because most of them contain soy protein, and consuming soy can be really tricky when you have cancer. I cut out all processed soy from my diet due to my hormone-positive breast cancer, but soy beans in their natural state (i.e., edamame in the shell) are safe to eat on occasion (per my oncologist) and are a good source of protein. 

For more on the soy-in-your-food debate, see breastcancer.org's article here. For my go-to list of healing protein, see below.

RENN'S TOP 10 HIGH PROTEIN FOODS

• 4 oz. chicken breast: 25 grams protein

• 8 oz. plain nonfat Greek yogurt: 23 grams protein

• 3 oz. solid white albacore tuna (packed in water): 20 grams

• 4 oz. lowfat cottage cheese: 15 grams protein

• 2 oz. raw almonds: 12 grams protein

• 4 oz. edamame* (soy beans): 11 grams protein

• 2 tablespoons crunchy peanut butter: 8 grams protein

• 1 stick light string cheese: 8 grams protein

• 4 oz. cooked black beans: 7 grams protein

• 1 large hardboiled egg: 6 grams protein

DELAYED HEALING

Alas, I do not have much room in my brain to fully ponder the notion of not going to the Cancer Center for 180 days. Why? Because my beautiful new incision (read about that here) is not healing again. (Warning: There will be pictures involved.)

Trouble starts up again: The telltale yellow spots.

Three small yellow/green spots (not infection, but excess collagen which is interfering with my body's ability to close my skin) develop along my right incision line. I continue to keep it sterile and covered with antibiotic ointment and Xeroform and plenty of gauze (which I have to change every few hours, because the fluid my body is producing is leaking through the spots in my incision. Kind of like having a bad period, but continuously).

I keep Dr. C.’s office informed, and I monitor my progress (or lack thereof) by photographing my incision line each morning. I also rest more by taking a long nap every afternoon.

Can I just say how hard it is to try and lose weight when I have to eat more food rather than less? Dr. C. told me that healing "is not the time to restrict calories." And getting in 100 grams of protein a day — protein promotes healing — means eating every three hours. (See my Top 10 List.) I can’t lift anything using my right arm because the incision is still healing. No pulling, no pushing, no carrying with that arm. No upper body exercise aside from gentle stretching. Walking is fine, as is the elliptical (but no arms).

I still feel semi-exhausted most days. Though I realize I've been under anesthesia twice in the past month (4 ½ hours total), in my mind I feel like I should have more energy. The old me is having a hard time accepting the new me.

Three spots converging to become one.

And I continue to document my progress with my digital camera. I highly suggest this practice.

After several weeks, I notice my revised incision is not healing properly. The yellowish green spots have merged, colliding to become one larger spot. Dr. C. doesn't like the look of it. He wants to "debride" (i.e., clean up) the unhealed area and re-suture my incision line. Again.

I'm pleased he’s taking the precautionary road and we are dealing with this surgically (my other choice: continue to take a "wait and see" approach while continuing to use a special “debriding” ointment, but that doesn't seem to be helping), but I’m not happy about having a 3rd surgery.

Quarter-sized spot

The spot grows to become the size of a quarter (see photo at right). So five and a half weeks after my last incision revision (and 8 weeks after my bilateral mastectomy), I am wheeled for a 3rd time back into the operating room. The staff is familiar to me now. They recognize me. “Oh, I remember you!” (Nothing like being famous in the OR.)

Dr. C. debrides the area and re-sutures the skin. (And yes I'm loosing a little skin each time he does this.) He removes another 50 cc's of saline from the right tissue expander, reducing the pressure further in an attempt to get it to heal.

My right tissue expander is now less than half the size of the left. Yes I am very lopsided and that makes it difficult to disguise in clothes. (As if having coconut shells on my chest weren't enough, mine seep and are different sizes! Oh the joy!) I buy a heavily padded bra that I wear to give the illusion of a normal shape. (Just don’t hug me.) But most days I live in my surgical compression vest — which I still must wear 24/7.

Newly debrided, re-sutured incision

My new incision, however, looks beautiful (see image at right)! I am told to focus on getting back to life: keeping up my protein intake, walking, trying not to do too much around the house (I have to force myself to limit movement of my right arm so I don't put undue pressure on the new stitches). My energy is coming back despite having 5+ hours of anesthesia in two months. I’m back to hiking twice a week.

But as all things in the world of cancer, nothing ever goes as planned. Several weeks pass and again, the tell-tale spots. (What a sinking feeling that is.) The spots are small, and do not advance as quickly as in the past, which is good (and I make note of), but still, it's hard to ignore the fact that this incision does not want to heal. (My other side? Completely fine, still.)

With spots come seepage. It's almost like my incision is weeping along with me. The seepage seems to be tied directly to how active I am. If I work at the computer and then take a nap, it doesn’t leak; if I take a hike, make a salad or drive to the grocery store, it does leak. How much of a prison can I live in? I vacillate between doing nothing for days on end, and trying to be normal (save from using my right arm). And still I leak. Labs show no sign of infection, BTW.

I am a patient woman, more patient than most, but WTF? Seriously, I am so over this. There have to be other women out there who are struggling with these healing issues too. Sure enough, I head online and start a thread within the BC group for tissue expander problems (aka “delayed healing”). Once I connect with others in my situation, I feel far less alone, knowing these ladies "get" the frustration I am wallowing in. Some had infections that prevented their healing; some had allergic reactions; some experienced rejection of the expander (their body viewed it as a foreign object); some had an expander that sprung a leak (it happens!); others had thin skin due to radiation or surgery — the latter of which we believe is the cause for my troubles. My surgeon scrapped as much tissue out of my affected breast as possible during my mastectomy (I told him I didn’t want any tissue left for bad cells to move into so get it out, please — and he did). But now there doesn't seem to be enough circulation in the thin skin that surrounds my incision.

Dime-sized hole in my incision.

Despite the exercise, the protein, the non-use of my arm, the naps and my (generally) sunny disposition, my incision doesn't heal. The main spot widens to the size of a dime. (Better than a quarter! See photo at left.)

Office stitches

I know I can heal this if Dr. C. reinforces the center of the spot — so he gives me a four blue stitches (in his office this time, no anesthesia, and yes I was scared).

I have been wearing my surgical compression vest and changing my gauze dressing for 5 long months. I can do it a little longer.

Husband and I decide to take a short trip to Las Vegas to celebrate our anniversary and take my mind off my healing. It works; I am able to completely forget I have cancer (seriously!) and I feel like the old me. It was fabulous.

Except when it wasn't. We were walking a lot, so, natch, the seepage increased. (We went to a show one night, and I was seeping so much I had to stuff a washcloth in my big bra to safeguard against leakage.)

The "What happens in Vegas, stays in Vegas" addage apparently doesn't hold true for me. I make an appointment with Dr. C. to discuss said seepage. He removes my pretty plastic stitches and says the incision looks great, but is concerned that the incision is not sealed. He explains that because my skin is so thin, any buildup of fluid will exit at my weakest point.

We are bandaging the wound differently for the next few weeks to see if it heals any differently.

Then we start talking about Las Vegas. (Funny, I don't remember telling him I was going.) I say it was great to get away. He asks how we liked the Wynn. What? How does he know we stayed at the Wynn? I look at him, perplexed. He keeps going. “You were on the 60th floor, right?” Whoa. What? "How do you know that?" I ask. He laughs and says he saw my husband and me get on the elevator just as he and his wife were getting off. He called out to us but then the elevator doors closed.
He figured I didn’t recognize him in his pool shorts. (He would be correct; I usually see him in a suit.) I added that had I seen him, though, I would have told him I had a washcloth stuffed in my bra! We had a good laugh.

When I tell Husband the story, he laughs too, then has a vague recollection of a guy in a straw hat, waving at us from an elevator. Small world, isn't it?

CALLING ALL U.S. BC PEEPS!

Here's a quick survey for any woman in the U.S. who has ever been diagnosed with breast cancer. This survey looks at the risk between breast and uterine cancers.

Props to Dr. Susan Love's Army of Women for the heads up about this study from the University of Louisville Brown Cancer Center. And if you aren't already an AOW member, register here; it's free, and there are lots of studies to peruse that you may be eligible for.

Your participation really can make a difference in the development of future treatments for women with breast and other cancers.

(Courtesy Army of Women)