Thread: Any breast cancer survivors out there teaching?

I'm really interested in sharing with other teachers who have personally gone through the whole drill of diagnosis and treatment while teaching. How have you dealt with fatigue, range of motion issues, depression, body image?

And on the flip side, who has worked with healing bc survivors, using dance as the tool? I'm really eager to hear your stories! Thanks.

You may want to contact Johanna/Xenobia in St. Pete, FL. She s a wonderful dancer and instructor as well as a breast cancer survivor. She's a really sweet lady and I am sure would be happy to talk with you about it as well.

Our own Donna Diva is a survivor - something I thank God for quite often!

Thank you for those names. Are these two ladies on Bhuz ever, or should I google them?

Donna Diva is on Bhuz quite regularly.

I don't think Johanna is on here often, but you can contact her through Johanna

(Love you, too, Laura! You are a wonderful friend!)

Hi Bellabelly,

I'm a 5 year survivor (August 5). I've been teaching for over 10 years, and I've been performing both belly dance and hula for 33 years. I'm one of the lucky ones - my cancer was found in a regular yearly mammogram before it even had a chance to form -- grains of sand is what it looks like. I had a lumpectomy less than 2 weeks after it was detected, and had 36 radiation treatments (3 boosters). I did not need chemo or any other medication. I followed-up with mammos every 6 months (on the affected breast) and have now been given an all clear by my doctor to just continue with yearly mammograms.

Throughout my treatment, I continued to teach my regular dance classes, and can honestly say that if I didn't have the support, love, and friendship of my students -- my close circle of friends -- I easily could have curled up in a corner and had myself a very long pity party. These wonderful ladies treated me with enormous amounts of love and humor. Laughter is what got me through the down times. They made me laugh -- a lot -- although sometimes I did have to remind them that when they were making faces at me behind my back -- I could SEE them in the mirrors!!! But they also made me realize that no matter what, I would survive. (Shoot, if I could survive their teasing, I could survive anything!)

As for handling the fatigue and range of motion -- I did what I could and relied on my helper habibis to step up front and do the demonstrations for me while I sat in a chair. They were great! (Two of my biggest helpers "graduated" from my classes and are now excellent teachers and performers in their own right - sister Bhuzzers Anisah and Amirah.) I can't speak to depression because, honestly, I never got that far down where a phone call or an email, or just a touch from a friend didn't pick me up again. The email jokes they sent me were incredibly funny - and had me laughing all the time. You can't be depressed when you're laughing that hard.

As for body image, it was never an issue with me - I didn't lose a breast, I just lost a golf ball sized lump. I'm an older gal anyway, and gave up the restaurant and private gig circuit long ago. But in talking with other survivors/dancers, I found that there are a lot of costume options to make every one of us look beautiful and comfortable. Many of us have to pad our bras anyway, right?

I chose to take it one day at a time, and said a thank you prayer to the Good Lord every morning for giving me another day. I'll continue to do that until the morning comes when I see Him face to face to thank Him for the life he gave me. And the friends.

Bellabelly----
I can only speak to you as one of the helper habibis and friends that DonnaDiva spoke so genorously of
(..cr.:..cr.: aw shucks)......
but she speaks the truth when it comes to using the support of
your dance sister, students, and friends to help you heal.

Don't ever hesitate to admit you're having a bad day. The power
of the group can pull you thru---it's kind of like the wagons circling the
camp! You would be surprised and how strong and resourceful your
friends can be for and with you. They will come to your aid and support
in way you didn't know you needed----we knew very well she could see
us---that was the point ..l;,
Put it out there, the good, the bad, and the ugly, and as a whole my guess is
that you will work thru it all!

Donna,

Thank you so much for your post. I go for a diagnostic mammogram tomorrow morning because a spot has been found on my left breast. I am so scared! Your post really made me feel better.

bless you,
rassi

I'm an 8 year survivor in October, teaching for about 10 years and dancing for 30 years. I found a lump in my breast, had a lumpectomy and lymph node disection. I went through 9 months of chemo and 7.5 weeks of daily radiation. I do twice a year blood panels and a yearly mamogram now.

I taught and danced through out. I had tremendous support and understanding from my students. Some days I couldn't remember what came next in a combination I'd just taught, my brain just wouldn't function right (chemo brain). Dancing kept me active and goal oriented throughout the treatment phase, it really gave me something wonderful and fulfilling to focus on rather than dwelling on what I was going through. I wrote this little blurb for Oasis Dance Camp and it deals with how supportive other dancers were:
I fully experienced the compassion of this network of women the year I received my diagnosis of breast cancer while I was at camp. The heartfelt giving and support of the group is something I drew on time and again as I went through treatment and is something I will never forget and always treasure.

It has been my goal since then to try and bring this same generosity of feeling into my dance and to share all that I've learned with my students and others I come in contact with.

Fatigue was a biggie while going through treatment and for a few months after...I learned to pace myself and the students were grateful as they said I worked them too hard anyway..g.: I also had the students work more as groups to perfect using the movements by making their own combinations and short choreographies. My range of motion wasn't impaired in any way except for stretching out the scar tissue in the surgery areas. I did a lot of yoga.

I lost the top half of my breast so I have costume, but not body image, issues...padding the bra correctly is challenging. I now have lymphadema in my arm. My right arm is always bigger than the left now...noticably if you're looking for it. An even bigger issue for me is that it occasionally gets infected because the lymph fluid can't move through it. It's progressively getting worse, twice it's been a threatening issue that almost landed me in the hospital. Major body issue at the moment-I'm always looking for ways to protect it and disguise it!
I felt, when I came out of surgery, that the doctor had gotten it all. I later allowed the doctors and my husband to talk me into doing the chemo and radiation to increase my chances of survival. Like donnadiva, I took it one day at a time and whenever I got depressed I made myself take a look at everything that was going right in my life...and all the things I wanted for the future. It turns out that I was there for my daughters high school graduation, her wedding this year, made that fabulous once-in-a-lifetime trip to Cairo (and am now planning the return trip) and other wonderful moments too numerous to mention...

Wow! Thank you so much for sharing Donna. And congratulations on your health!

In a nutshell, I was NOT so lucky with my diagnosis. Two completely different primary cancers in each breast. Radical bi-lateral mastectomy, chemo (just finished), radiation (about to start) and then reconstruction down the road. The number of lymph-nodes taken packed quite a wallop in terms of range of motion on my right side. Now about 90% I would guess.

I am truly blessed with friends, and I couldn't agree with you more about the HUMOUR! I could write a book about the hilarious irreverant moments throughout this whole ordeal, and wouldn't trade in the looks of shock from my doctors, family and friends for ANYTHING! I'm convinced there is NOTHING I could do to chase my husband off at this point.

Initially, I would actually teach the day of my chemo (since it didn't hit me till 2-3 days later), but eventually, the treatments are cumulative and they do wipe you out, if not whip your butt. I was SOOO lucky. I was given GREAT drugs and my side effects were very well managed.

The drastic change in appearance, physical strength and flexibility, being isolated, dreadfully missing the teaching, performing and interaction, and being legitimately scared in the face of your own mortality, yeah, depression isn't a surprising condition. But I did the proactive thing and shaved off my hair (and donated it) before it fell out in clumps, giving me some small sense of control, and I proceeded to buy an assortment of very outlandish wigs. (My daughter and I had a great time grocery shopping wearing dreadlocks, and my fushia bob was a great hit at the dance studio, the mall, and the Star Trek Premiere. I"m hanging on to my Amy Weinhouse "rehab" wig for the perfect occasion.) I realized teaching bald really rocked! Nobody bats an eye and I feel great! (I did recently have my head henna'd when the dr. gave me the okay.) Now that the eyebrows are gone (they held on till the last moment) I'm asking my students to submit photos or sketches of celebrity eyebrows they think I should try. Yes, I AM weird, but so are they.

And body image....well, I look very different now, and no, I don't like it a bit. It's definitely given me pause - remembering the words of encouragement I would give students who didn't fit the barbie-doll mold. I will be dancing in an upcoming Breast Cancer fundraising event (October, Goddess willing!) and will not be wearing any prosthetics.

My situation is unfortunate for me, but I've chosen not to hide myself or illness under a rock if it can in any way motivate another women to go get a mammogram. I am NOT a psychologist, LCSW, or physical therapist. I am looking into Healing through Movement type classes and really welcome advice from those of you who consciously focus your energies on dance as a healing medium.

Sorry to have rambled on. I just really do want something positive to come out of the experience.

I deeply appreciate you sharing your experience. I was incredibly lucky to have one of my students who had been through the whole 9-yards take me under her wing. I haven't yet escaped the grip of chemo brain, but the fog is lifting a little bit day by day. (How long can I officially use that excuse???)

I lucked out in that the physical therapist I chose is also a lymphedema expert, and she has given me a bunch of exercises to do manual drainage. I was already extremely self conscious about my arms in a completely vain way -- and have guantlets with about every costume I own!

Regarding the costumes --- shopping for them was such a joy! And I miss that. Am very lucky to have two masterful and wickedly creative costume designers as friends...so will deal with that when the time comes.

It's wonderful to hear 8 years! And Cairo is on my list too! As are all the graduations my daughter has yet to celebrate and the good stuff that will follow.

Originally Posted by bellabelly

I am looking into Healing through Movement type classes and really welcome advice from those of you who consciously focus your energies on dance as a healing medium.

Your story is amazing - what a wonderful attitude! Thank you for sharing it.

Have you heard of the Lebed method of movement? I don't know much about it, but I know a breast cancer survivor who told me she attended classes in it and found them wonderful. Here's their web site: Healthy Steps - Home

Here's wishing you a long, healthy life...

[QUOTE=bellabelly;486072]

I lucked out in that the physical therapist I chose is also a lymphedema expert, and she has given me a bunch of exercises to do manual drainage. I was already extremely self conscious about my arms in a completely vain way -- and have guantlets with about every costume I own!
QUOTE]
I also have lots of gauntlets. I've never been lucky enough to find anyone in our area that knows much of anything about lymphedema. Any chance you'd care to share what the exercises are that she gave you??? There is a new treatment involving kinesio taping that I would like to try if I can ever find anyone in my area who does it.
The worst effects of chemo brain gradually fade away but I found that during periods where I was extremely physically active it would recur for short periods for the first five years after I finished treatment. I no longer have any "episodes" which included transposing numbers (I work for an accountant), typing garbage...I knew what I wanted to type but even when I watched the keyboard I still got a lot wrong, and remembering choreography or combinations during classes-I was usually fine during the first half of class but during the second half I'd start to have problems remembering what came next-not a comfortable feeling!!

It would be my pleasure to hook you up with this info...and the therapist herself if you like. Her name is Mary Kathleen Kearse, PT, CLT-LANA (she goes by Kathy) and she's written the book Lymphedema Caregiver's Guide.

I have her book and will pm the relevant pages to you tomorrow if that's okay, along with her contact info.

Holding the arm up, there's a manual drainage exercise using light stroking that stimulates the skin on your arm and directs lymph downward (but not directly toward the underarm.) There's another one to promote the flow of lymph in the area above of your collar bone. There's also a deep breathing exercise, and a couple others. I really recommend being taught by a qualified expert on this, but they are simple exercises to do that don't take hardly any time.

After reading up on this some, and working with Kathy, it astounded me when I attended a Lymphedema break-out session at a recent Survivor retreat, the number of women suffering with this whose surgeons and/or radiology oncologists just poo poo this side effect of surgery/radiation. Kathy's slide presentation showed remarkable before and afters (post-lymphedema treatment.) She is so compassionate and encouraging.

I'm afraid I'm still on the front end since I haven't had my radiation yet, but I'm at least comforted knowing I've got someone here who will help me stave off and mitigate the effects.

As far as chemo-brain, I agree it's perturbing and annoying and downright inconvenient. I just hate having those "lost" moments. My students know exactly where to pick up when I stumble -- they're very supportive.

Originally Posted by bellabelly

It would be my pleasure to hook you up with this info...and the therapist herself if you like. Her name is Mary Kathleen Kearse, PT, CLT-LANA (she goes by Kathy) and she's written the book Lymphedema Caregiver's Guide.

I have her book and will pm the relevant pages to you tomorrow if that's okay, along with her contact info.

Holding the arm up, there's a manual drainage exercise using light stroking that stimulates the skin on your arm and directs lymph downward (but not directly toward the underarm.) There's another one to promote the flow of lymph in the area above of your collar bone. There's also a deep breathing exercise, and a couple others. I really recommend being taught by a qualified expert on this, but they are simple exercises to do that don't take hardly any time.

After reading up on this some, and working with Kathy, it astounded me when I attended a Lymphedema break-out session at a recent Survivor retreat, the number of women suffering with this whose surgeons and/or radiology oncologists just poo poo this side effect of surgery/radiation. Kathy's slide presentation showed remarkable before and afters (post-lymphedema treatment.) She is so compassionate and encouraging.

Yes, please PM me the info or you can email me: banatsusan at hotmail dot com My problem here has been finding a qualified expert. The closest clinic is approximately 100 miles from me and they require you to sign up for several weeks of daily treatment which includes manual drainage and bandaging. I don't need that, my dancing and diet seem to be keeping the lymph problem under control for the most part. It would be nice to learn a few exercises to correspond with the care program I now have. The other problem is that most doctors don't recognize cellulitis when they see it. One doctor in the emergency room went ballistic when he saw my arm inflamed and pushed me into all kinds of tests because he was sure it was a sign the cancer had returned...needless to say, he scared me to death...

I have nothing really to add, other than your story really touched me. I've had some people close to me experience similar and...well, I wanted to send you hugs, encouragement, big cheers (for your amazing strength, courage and attitude), and reassurance that it's ok to have times when you *don't* feel strong, courageous, and upbeat, and it's ok to mourn the "little things" when you need to--afterall, it's your life, your body, your expectations that have been interrrupted and altered by this experience. No one can tell you how you should feel.

You are amazing and strong and powerful, and your courage in posting your story in this forum (and asking for the help you need from fellow dancers) is great. Thinking of you, and sending you healing vibes. :) Good luck with the celebrity eyebrow project too!

Ahhhhh, thank you Mirah :) I'm just crazy enuff to post pictures of my eyebrows - don't dare me to do! Hey are there any famous bellydancers with great eyebrows??

My current teacher is a survivor. I am sure she would chat with you about it. PM me and I will give you her number.

I have nothing to offer other than sharing how inspirational this thread is. Thank you for being such shining examples of beautiful, strong women.

Originally Posted by bellabelly

Wow! Thank you so much for sharing Donna. And congratulations on your health!

Sorry to have rambled on. I just really do want something positive to come out of the experience.

Not a ramble -- an inspiration!

Darn! Wish I had thought of the dreadlocks . . .

Bless you!

Originally Posted by rassicahl

Donna,

Thank you so much for your post. I go for a diagnostic mammogram tomorrow morning because a spot has been found on my left breast. I am so scared! Your post really made me feel better.

bless you,
rassi

Please keep us updated. We're all here for you -- and for the others having to deal with this horrible disease.

Originally Posted by bellabelly

Ahhhhh, thank you Mirah :) I'm just crazy enuff to post pictures of my eyebrows - don't dare me to do! Hey are there any famous bellydancers with great eyebrows??

I wanna see the eyebrows!!! I dare you!! No, I double-dog dare you!!

Got any pix of you in that dreadlock wig. I'd love to see that!

My first teacher, Elinor Friedburg who teaches @ Portland State University is a survivor & still is teaching.

Okay, so last night we had Threadbangers at my house (my troupe's adjunct travelling sewing bee) and the girls took turns drawing eyebrows on me. The last rendering: Spock eyebrows. Both my husband and daughter walked in and out of the room a couple times looking at me and talking to me while I'm at the surger, never once batting an eye or making a comment. For my daughter who's grown up with my shenanigans, I'm sure she noticed, and being a teenager didn't care. My husband on the other hand, I'm PRETTY sure didn't notice at all (as his observational powers have been called into question before), so I left them on all night so he'd see me in the light of morning looking all Vulcan-like, still nothing. What does a girl have to DO to get a little attention?!! (Picture coming....)

PSA for mammograms -- especially for women with implants

Ladies, since I'm baring my soul, I thought of one thing regarding my situation I really need to share and that is the fact that I had implants at the time of my diagnosis (had them over ten years) and when there was a change in my right breast, it wasn't tender, raised, or discolored-- it wasn't a bump or lump or node or anything pill shaped like we're trained to feel for. It was a subtle, generalized hardening, and I had heard so much about capsular contracture, that is the direction my mind went before seeing a doctor, not breast cancer. At the time of my mammogram, they focused on the other breast longer, as there ended up being a separate, unrelated primary cancer there (DCIS, Stage 0, undetectable by manual exam.) So THANK GOD for mammograms.

I can't go back in time and alter my awareness, self-diagnosis or the distractions and obligations in my life that "kept" me from getting a mammogram sooner, but I can be that nagging voice that encourages others to be diligent about their own health. As I've talked with other women, I have learned of others who have ignored or dismissed unusual characteristics or changes they assumed were related to their implants. I'm not saying this to unnecessarily scare anyone, but I can't implore y'all enough-- please get your mammograms done regularly and see a doctor at the first sign of anything different.

So on a somewhat lighter note.....

Are any of you aware of an existing network or support group for bellydancers going through the experience of breast cancer?

If there isn't one, do y'all see a value in forming one? I would envision it as an optimistic resource, addressing concerns and issues in a positive way, providing encouragement, ideas and emotional support specifically to ME dancers dealing with bc. (Throughout my whole experience with bc, I purposely avoided cancer forums and message boards, fearful of misinformation and horror stories. And certainly my questions about how I was going to be able to remain active and involved in ME dance throughout, weren't going to be answered there.)

I'm SO new to Bhuz, is there a format on this site where that already exists or could exist??

Hi there :-) I personally love your dreadlocks, having seen them first-hand :-)

Sonja - you saw the braids, not the dreadlocks-- they've only made one public appearance so far, and I have them in both blonde and brunette! (I don't think I'm spelling dreadlocks correctly...) And I do wear the braids a lot, preferring them to my "Mom" wig. And then there's the wig I've dubbed "the Gina" after Gina of Atlanta (she's so honored lol)! I still need to debut my blonde bufant wig reminiscent of the fembot from Mars Attacks.

I love my wonderful teacher & friend Sabylla!
I will send you the pics from last night so you can post them!!

I must also say to all that even going through all she has endured, she is still one of the most graceful, beautiful & vibrant dancers and women I know.