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name:mod*mom
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luxuriamusic

10.08.2007

time again to squeeze your lemons for signs of breast cancer.
i had several new suspicious lumps checked out by my oncologist last week.
she felt them + said, "they feel cystic" (benign) + "you had a mammogram, ultrasound + breast mri in may, which shows EVERYTHING, so let's see you again in 3 months." i was in shock. my diagnosis last year was "bad prognosis, her2neu 3+++, stage 3b, 10x8cm tumor, spread to lymph nodes, highly aggressive, likely to spread + recur" + after a mastectomy + radiation + chemotherapy + several months of herceptin
monoclonal antibody infusions (we suspended the last 9 months of herceptin that would supposedly prevent a recurrence of cancer by 50% due to acute congestive heart failure it was causing), she told me she'd monitor me "carefully." high surveillance for breast cancer recurrence actually translates into me doing monthly manual exams + my oncologist doing manual exams every 3 months. now i've got lumps she says "feel benign" + i don't find that reassuring. my huge breast cancer tumor was undetectable by mammogram + it was the size of a large bar of soap.

meanwhile, there is a pink ribbon party going on this month with millions of products selling + well meaning people walking + racing for the cure.
the book pink ribbons, inc. says over 1 million people participated in the susan g komen races for the cure in 2005 alone (that's not counting the avon, livestrong + american cancer society walks). i've been wondering, what are those walks accomplishing for breast cancer? where is that money going? awareness: i think we're all pretty aware that breast cancer is common + you should detect it early; prevention: supposedly it's not preventable; research: don't the pharmaceutical companies make huge profits? my cancer treatment costs were over $100,000; survivor programs: most of them are staffed by volunteers who are breast cancer survivors with donated space, equipment + tax deductible expenses.

where is all that money going? maybe elizabeth edwards or hillary clinton will look into making sure it's toward better diagnostic equipment than mammograms + manual exams (google please help us!). we need specially targeted chemotherapies that don't cause heart failure + permanent nerve damage (my hands + feet are numb) + destroy ovaries. we need targeted chemotherapies so effective, we won't have to endure radiation (medieval burning of the skin + breast tissue) + surgery (i miss my breast + my arm is permanently nerve damaged, painful + swells from lymph edema. my daughter asks me when will my breast grow back (like a lizard's tail she knows detaches as a defense mechanism). sometimes at night before she goes to sleep she sobs + demands to know, "where is your booby mama?! where is it? take me to visit it! i want your booby back!"

update oct 9: 1st thing this morning she demanded to go see my breast. she said, "i miss it mom, i want to see it even if it's not attached to you."
i told her i've still got one attached + let's be good to that one.

by ~mod*mom~ at 8.10.07 ©

21 Comments:

Mod*Mom, I would request a biopsy. Three months is three months TOO LONG. At the very minimum more images.

My friend had negative tests in April and found a highly aggressive tumor by herself that October, the same year you got cancer.

Your tumor was aggressive, and she shouldn't be taking chances by assuming nothing new would show up in 3 months, or that you can afford to wait another 3 months.

Good Luck.

By Anonymous Your Fan, at 10/08/2007 4:08 PM  

I agree -- I know you'll take charge.

As for the pink campaigns, my article for which you kindly agreed to be interviewed on pink campaigns is up over at MSN.

By Blogger PunditMom, at 10/08/2007 5:16 PM  

Great post. While I understand your doc's approach -- tests are stressful and sometimes that stress is counterproductive -- it's not her call. We all have different levels of comfort and for you, sounds like knowledge and certainty are key to the way you are negotiating your recovery. If the idea is that it will be good news, well, it's good news you want to hear.

By Blogger Jen, at 10/08/2007 7:00 PM  

I'm sending you positive energy for healing mod*mom. I think you summed it up that we need a better early detection technology.

By Anonymous Anonymous, at 10/08/2007 8:40 PM  

better safe than sorry...

By Blogger Naomi, at 10/09/2007 6:31 AM  

Mod Mom, this is my first anniversary of being told I have cancer. I understand what you mean when you talk about all of the well-intentioned walkers, pink ribbon wearers, etc. I have a hard time looking at that shade of pink. I'm not sure why. I think it's because I've been so overwhelmed with it. That shade of pink seems like a lame color to represent what we've been through. But I really really do appreciate everyone's efforts because without them I would probably not be sitting here typing this reply. My doctors tell me I'm in remission but I cant help but feel like the cancer is just waiting to come back at any moment. My best friend from childhood was recently diagnosed with stage 4 aggressive, inoperable cancer. I cant help but wonder what we might have done all those years playing together in the James river, poluted from multiple sources.
Thank you for your wonderful website. Thank you for letting me have a place to express myself!

By Anonymous Hillary, at 10/09/2007 6:56 AM  

I'd be angry. I'd want someone to take the lumps seriously...to biopsy them.

I'm intrigued by your perspective on the big "pink party." I'm starting to feel like too many people are making money off of going pink and NOT sending it in for research.

I'll be thinking of you. Really, I will.

By Blogger Mamma, at 10/09/2007 7:06 AM  

MM- You're so brave to write to candidly about your experience. I will keep you wrapped up in healing thoughts.

By Blogger Ms. Mamma, at 10/09/2007 1:53 PM  

MM-
I remember you said the original cancer also felt like cysts, being the reason the doctors didn't biopsy for so long.

You are so brave, and like you always say, enjoying each day is what's important. Don't let the next three months be wait-and-see days when you could have an answer right away.

My friend went through breast cancer treatment and she had a tough time with the ribbons for a while. Right now I donate a dollar each time I go to Safeway. I hope it goes to good research!!

Thanks for sharing.

By Anonymous Anonymous, at 10/09/2007 5:33 PM  

Hey, i like your latest on the blog. Getting people to think twice about all these cancer walks will wake everyone up about the proceeds, where the money goes, and getting the most to go towards the mammogram machines, research and prevention (if those 2 are viable). Anyway, years ago my dad put this bee in my bonnet and I am picky ever since about which walks/runs I participate in and which I do not!

By Anonymous Cammie, at 10/09/2007 5:58 PM  

you guys are so great to read my rant + encourage me:) thank you soooo much for the understanding + support.

hillary: that's awful you're dealing with this yourself + with your friend.

punditmom: thank you for interviewing me on this topic + thank you for the link to your story on msn.com. here's a link to it for others to read: http://lifestyle.msn.com/mindbodyandsoul/womenintheworld/article.aspx?cp-documentid=5537148

By Blogger modmom, at 10/09/2007 6:12 PM  

i had no idea that she was so sensitive to these things.

By Anonymous Karen in Hayward, at 10/10/2007 1:54 PM  

hi - have you read crazy sexy cancer by kris carr? she talks a lot about how to help combat some of the side effects to chemo naturally.

and i only refer you to these great tshirts because i think you have the right sense of humor for them - Save 2nd Base. www.save2ndbase.com

best wishes to you,
jenny

By Blogger LobotoME, at 10/11/2007 2:27 PM  

I'm so sorry you have to deal with any of this. I wish I knew the perfect thing to say. (Or even a good thing to say.) Just know that there are many of us out here thinking of you and wishing you health and all other happy things.

By Blogger Merrily Rolling, at 10/12/2007 5:16 AM  

You know, I'm not sure what to say exactly...I am so amazed by breast cancer survivors. Every one I have met has just been a strong, fabulous individual.

I want to wish you well and am sending healing prayers and vibes.

I do think the awareness campaigns keep it on the minds of those who don't have it in their face every day. And I think the money is helpful if it sponsors research for surgery and other treatment techniques, the ones that save lives but don't make big money.

But mainly I just want to say you are amazing and you absolutely rock and I hope to hear soon that everything IS benign and you are doing well.

By Blogger Mama Luxe, at 10/12/2007 9:51 AM  

I hope you have read barbara ehrenreich's article on the whole psychosis behind the pink ribbon and the survivor culture of breast cancer.I found it astute and a worthy dose of bitter humor.

Here is a link:
http://www.bcaction.org/Pages/LearnAboutUs/WelcomeToCancerland.html

Noone in my family has two breasts.I hope your pain eases. ~oange

By Anonymous Anonymous, at 10/13/2007 1:55 PM  

karen: she remember's breastfeeding, because i was weaning her last year when she was 2 1/2 when the tumor was diagnosed as cancer (i thought it was a plugged milk duct).
lobotome: i haven't read crazy sexy cancer
oange: that breast cancer action article writer is "angry" in general + she says she was angry throughout the treatment. i don't buy pink ribbon stuff or pink teddy bears either, because it's not my style, but i'm not angry at people who sell or buy them. we all heal in our own way.

By Blogger modmom, at 10/17/2007 5:15 PM  

oange: i just had a chance to read that full article (it's soooooo long, but i agree she's astute. she summed up a lot of things i've been thinking about.

By Blogger modmom, at 10/21/2007 8:11 PM  

You're helping us all MODMOM!

By Anonymous Cyndi, at 10/25/2007 10:58 PM  

Read this -http://www.healingcancernaturally.com/budwig_protocol.html



Fiona

By Anonymous Fiona, at 11/02/2007 4:20 PM  

thank you for the link fiona!
i've read about the budwig diet because some women in the bay area young survivors group are using it. i'd love to try this.

By Blogger modmom, at 11/02/2007 4:23 PM  

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