October 21: Interview with METAvivor's Kelly Boyd Lange

I interviewed former METAvivor president and current Secretary/Treasurer Kelly Boyd Lange via email. The following are her replies.

When were you first diagnosed with Breast Cancer?

I was first diagnosed with stage I BC in 1995. I was 32. I opted for lumpectomy/radiation, and chemo wasn't recommended (I think it would be now).

When were you diagnosed with Metastatic Breast Cancer? What were your thoughts upon hearing the metastatic diagnosis? Was your perception correct? What has changed since then?

Starting Herceptin, 2007

My first recurrence was in the lumpectomy scar 5 years out. After that I had several lumps under my arm, which were removed in two surgeries. I remember going to the pre-op evaluation for one of those  axillary dissections and seeing an oncologist's note describing me as "stage IV". The label surprised me - I was rationalizing that with involvement in the breast and under the arm I was more in line with stage II or III.

Of course, I knew it wasn't good that it kept coming back, but I didn't think of myself as metastatic since I had no involvement in lung/liver/bone/brain - or any other essential organ. That changed when it spread to my skin in early 2007. Even then I can't say I was devastated; I think the incremental progression towards mets prepared me emotionally. I'm not saying it wasn't hard, it's just that I dealt with it so gradually compared with how it happens for most people. At that point I started Herceptin, more than seven years ago now. After two treatments my skin cleared up considerably, and it is still clear today. I count my blessing every day. I know how fortunate I am that I have been so stable for so long.

How did you first learn about METAvivor?

METAvivor found me! I was fundraising for the Komen 3 Day. I was chatting with an acquaintance about the walk, it turns out she was CJ’s neighbor. As soon as CJ heard I was stage 4 she got in touch. It didn’t take long for CJ to get her hooks in me, and set me straight about the state of MBC research!

When did you get involved working with METAvivor?

I got involved right away. I stopped working in late 2006 because of progression, but I was feeling so much better on Herceptin, so I had some time and energy to give. The hard part is getting close to people and then losing them. I try to turn the grief into motivation to keep plugging away. I hope that METAvivor is making a difference.

How much progress do you think has been made for metastatic breast cancer research?

Not nearly enough! The process is painfully slow, and it breaks my heart every time we lose someone that couldn’t hold out for that next hopeful drug. But I am encouraged in some ways. It seems to me like awareness is growing, and our voices are getting louder.

What's the one thing about metastatic breast cancer that you feel the public should be more aware of?

After 2 Herceptin treatments

It’s hard to pick just one thing! I would say the public needs to realize that MBC can happen to anyone. It happens no matter how well you take of yourself, no matter how long you have been “cancer free”, no matter how good your health care team is, no matter how young you are. It just happens to 1 in 3 of us.

What was the hardest treatment you've been through to date? The easiest?

The hardest treatment by far was the Adriamycin/Cytoxan regimen that I was on in 2000. The nausea meds just didn’t work for me, and I struggled with blood counts. Compared to the AC, the Herceptin that I am on now is a dream. The worst part is driving to the infusion center! We need drugs like this for everyone – effective and easy to take.

Do you have any special tips or tricks that worked for you in combating any side effects of any form of breast cancer treatment?

I always recommend that people talk to the infusion nurses. They have seen everything, and they are really good at side effect management. It was a nurse who suggested that I try lorazepam for nausea during the AC cycles. It was the only thing that kept me from vomiting non-stop for 24 hours after treatment. The nurses are just full of helpful information!



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Thank you so much, Kelly, for taking the time for this interview.

Kelly can be found on Twitter, along with METAvivor. 

Watch her interview on Lifetime's The Balancing Act.

October 20: Obituaries, a MBC reality

In just one day shy of a month, I'll be one year out from my cancer diagnosis. I was metastatic from the start. It's been a rough journey, breaking out of the pinkwashed world and coming to terms with what Stage IV really means.

One of the things I've done is find a free funeral planning website, My Wonderful Life. I've assigned an Angel, someone to release the details of what I've planned to loved ones, and I've also set up a pre-pay arrangement for my funeral. I've written my obituary, and decided that I want a visitation prior to the funeral, and I want to be cremated. My ashes will stay with Jen, and will be interred with hers once she passes.

I'd really like my ashes to be kept in a dragon-themed urn, such as this stunning beauty. The cost of it will come out of my funeral expenses.

This is the reality of Metastatic Breast Cancer. There's no Pink Cure here. And 40% of the people with breast cancer have Metastatic Breast Cancer, which is responsible for 100% of the breast cancer-related deaths. This is why I advocate so hard to keep Stage IV from being ignored. Even people with earlier-stage Breast Cancer are blinded by the pinkwashing and don't realize they're at risk of developing metastasis, regardless of stage and treatment. Stage IV needs more. We need more awareness, more funding, more research. To drive the point home, that those with a metastatic diagnosis are terminal, we have to start actively thinking about things like wills and funerals, and sometimes at a young age, I'll share my obituary.  Obviously it will be edited as time passes and things change, but this is how it is today, at this moment in time.

Susanne Kraus-Dahlgren
"She's a traveler, she's a gypsy, passing through and moving on."
Born April 23, 1974 in Ft Wayne, Ind to her amazing and awesome parents, Michael and Carolyn, who survive her, she moved to TX at age 16, and then later to her final home of Lincoln, Neb, which she shared with her partner and wife of $Years, Jennifer Kraus-Dahlgren, and their furbabies, Josh, Loki, and George Bailey.
She is also survived by her grandmother, Marybelle Timbrook of OH, four aunts, two uncles, their spouses, and dozens of cousins, and five heart-sisters: Rebecca Ford of TX, Kristin Davis of NC, Caity Silke of CA, Laura Schultz of NH, and Sara Lang of TX.
She is preceded in death by three grandparents, Clifford and June Kraus of IN, and Basil Timbrook of OH, and by numerous furbabies who have happily welcomed her to her new home.
In her too-short journey on this earth, she was an actress, a writer, a knitter, a geek, a horseback rider, and a nurse. A daughter, a lover, a friend, a sister, and family to many more than the bonds of genetics define.
"If nothing we do matters, then all that matters is what we do."

I want the obit printed in three newspapers.  The Lincoln Journal-Star, the Fort Wayne Journal-Gazette, and the Bryan-College Station Eagle.

I want memorial donations in my name to go to any of these beneficiaries:
 http://www.allfelinehospital.com/
http://www.metavivior.org/
http://www.youngsurvival.org/
http://wishuponawedding.org/


This is the reality of Metastatic Breast Cancer. I'm 40 years old and I have an obituary written. Hopefully it won't need to be published for a long time to come, but I know it will be published. Where's the Pink Hope and Cure for me? It doesn't exist.

If this month has taught you anything about the realities of MBC, please consider making a donation to METAvivor instead of buying pink ribbon merchandise.

October 19: Discovery

Another question from Facebook.

How was it found? - Cathy

 Not by a mammogram, I can tell you that. I first found it when I was on my way back to my car from a funeral, with my arms crossed over my chest against the cold. There was a spot on my breast that started aching, and when I put my hand over it, I thought I felt a lump. But it was hard at the moment to be sure of what I felt with the density of the tissue and the body reacting to the cold.

I couldn't find it again later, so I forgot about it. I noticed it again when my breast started itching, and I realized there was a small lump inside that felt painful and itchy. That was exactly the case when I had a cyst in my late teens, in almost the exact same location on my other breast, so I didn't think anything of it at first.

It seemed to come and go along with my hormonal cycle, sometimes disappearing altogether as far as I could tell during certain points. While I still had health coverage for a bit of time during this period, the lump was not always present. Taking into account the pain, the itching, and the come-and-go nature of the lump, it seemed far more likely that it was benign. Keep in mind too that I was several years shy of 40 at this point.

By the time it was more persistent, I no longer had medical coverage, and couldn't afford a trip to the doctor, let alone any tests they might want to run. So it remained a cyst in my mind, and I just had to wait for it do like the other one did, rupture and drain on its own. I finally found a medical provider who I could afford while I was on worker's comp due to an injured wrist, and went in to have it drained.

That's when I found out that with a detectable lump, I qualified for the state's Every Woman Matters program, even though I wasn't yet 40. I had looked over the website time and again in the past and there was nothing to indicate to me that it would cover the cost of the biopsy and follow-up if I had a lump even if I was under 40. That would have been a game-changer, for me.

I didn't have a mammogram until the age of 39, after the cancer was already diagnosed, and even then, the mammogram on my right breast was so inconclusive due to the density of the breast tissue that they had to resort to an ultrasound to verify that there were no lumps present. That same day, I had a PET scan. A follow-up biopsy to my liver a few days later confirmed what the PET scan indicated. It had already metastasized.

October 18: Conversations With Cancer

Bringing in another question from Facebook today.

I've been on a kick watching House lately, and something Wilson said in an episode really sort of struck me and made me wonder. Paraphrasing here, "Once they find out you've been diagnosed with cancer, EVERY conversation is about cancer." what about reclaiming parts of a normal life? What's been easy to go back to, what's been hard to go back to? - Laura

 I think this is one of the points that divide Stage IV from early-stage cancer. With early-stage cancer, you have a chance at moving into a point of your life where cancer is a thing of the past. For Stage IV, it's always going to be there, and there's never going to be a point in your life that's "after the cancer". That makes it harder to keep the cancer from taking over your life and becoming the focus of every waking moment.

For me, getting back into writing has been hard. I was participating in 2013's NaNoWriMo when we found out, and I was ahead of the projected word count at the time. However, once the news came in, all creative energy was zapped out by the stress. I've done a little bit of creative writing here and there, but not like I used to. My writing energy has been going toward nonfiction, these blog posts and my memoir. Cancer has taken over my writing.

I do have plenty of conversations that don't have cancer as a focus, but it's still there in my mind, an underlying note. It's like any major lifestyle change. In the early days it's a Big Thing that can be overwhelming to think about, but as time goes on, it fades into the background where it's always present but not always noticed.

I focus so much of my energy on cancer because I've found passion in Stage IV Advocacy. The more I learn, the more I realize that there aren't enough voices crying out in the wilderness, we still lack the attention we need to bring in the funding to get the necessary research. It takes energy to maintain passion though, and I don't know how much longer I'll have the energy I need to do this. So I'm focused on getting as much done as I can before I have to take a rest.

I miss my old life. Sometimes I want to go back to the days when I was busily typing away and making word count, before my world turned upside down. I'd like to be able to live a beautiful life of denial sometime, and maybe then I can go back to writing fiction. I can't escape reality right now because my best chance at surviving my reality is advocacy and raising funding for Metastatic research that might benefit me down the line.

Yes, I admit that part of my motivation is entirely selfish. I don't think anyone with metastatic disease is fighting for awareness and research funding simply for other people. If we don't live long enough to see a viable treatment come our way, so be it, and our fellow metsters who survive us might still benefit. But it would be nice to see some results from our hard work, you know? We'd all like to live. There's nothing wrong in that.

My life changed so dramatically, I went from working to not working in order to keep the health insurance I'm on, and then I went from constant treatment to once a month injections. It was difficult to get back into a normal pace for life and find the energy to do things and accomplish things and interact with people for a while. After I finished chemo, I spent well over a month doing little but binging on Hulu and staring off into space. In some ways, my cancer has helped me find a focus to get back into life again by fighting for awareness, and sparked passion in me again.

So I guess that quote holds some truth. Once you have cancer, every conversation is about cancer. It's exhausting though, and I look forward to running some of the heat off this passion so I can take a vacation from cancer.

October 17: How I Reacted to My Diagnosis

On my Facebook, I opened myself up to questions for entry fodder for this month. Here's one of them.

What was it like when you first heard your Metastatic diagnosis. How did you cope? First thoughts? First days? First month? Now? -Beth

 When I first heard the words Stage IV, it wasn't entirely a surprise, but for the wrong reasons. My primary mass was 6 centimeters in size, and I thought that size was related to stage. It can relate to stage sometimes, but not always. I assumed because the mass was big, that meant it would be Stage IV. I didn't fully understand what that meant.

I thought I was still able to be cured. I thought I'd be fine, that I just had to power through harsher treatment, more chemo, more surgery than an earlier-stage patient might. You could say that I coped with denial. I wasn't dying. That couldn't be true. I would be just fine, just you wait and see.

I argued with my oncologist. I told him to mark my words, I'd be cancer-free, I was strong enough to beat this. Bless him, he didn't argue back. He knew I'd come around sooner or later, and that it wasn't the time or place to push the issue.

I walked a very fine between calm and screaming despair, like walking a tightrope. I put on the bravest front I could muster in an effort to convince myself that I would be okay. Whenever my thoughts started to run wild on me, I brought them back under control by reciting the Litany Against Fear from Frank Herbert's Dune.

"I must not fear.
Fear is the mind-killer.
Fear is the little-death that brings total obliteration.
I will face my fear.
I will permit it to pass over me and through me.
And when it has gone past I will turn the inner eye to see its path.
Where the fear has gone there will be nothing.
Only I will remain."

Jen and I at the salon when we got our heads shaved together.

 I fully and wholeheartedly believed, thanks to the pinkwashing, that I just had to be strong enough, brave enough, tough enough to fight this and beat this thing, and I would be fine.

Coming to the realization that wasn't the case was harder.

I was still convinced I'd be fine a month later, but I was starting to think of it more as a simple, chronic, and wholly manageable disease I'd just be on medications for for the rest of my life. I was starting to achieve some inner zen though, around the time my hair started falling out and I went in to have my head shaved.

Coming to terms with my own mortality, I wrote about that back in the early days of this blog.

I've come to realize that this is essentially a chronic illness. There is no cure. I will have cancer for the rest of my life and while I want that rest of my life to be a long, long time, I'm aware that it might not be, despite everything I do.

That's kinda fucking terrifying to realize.

I've been adapting to this understanding in bits and pieces. I've skirted around and cast indirect glances, like watching a Medusa through the reflection of a shield, by coming up with a soundtrack for my funeral, and I've looked it straight on without really thinking about it and wrote my own obit. I had to ease into the acceptance of this possibility the way you ease into a too-cold pool, or a too-warm hot tub. Inch by cringing inch.

But like the pool or hot tub, once you're submerged, it no longer feels as bad as it did going in. Sometimes it's even a comfortable feeling.

I think the imagery of Medusa and the shield is the best way to describe what it was like for me to face my own mortality. I couldn't look it directly on, or I'd turn to stone. I had to look at an indirect reflection to be able to face it. Once I was able to face it, I slowly became accustomed to it.  As I became accustomed to it, it lost its power to turn me into stone. Now, I can look at it straight on and say "I'm terminal" without a rush of panic or stammering excuses.

I'm doing fine now, better than fine, actually. According to my oncologist, I'm doing great. I do attribute some of that to my ability to achieve that calm zen I felt during my time in chemotherapy, staying calm and chill and upbeat. Positive thinking won't cure my cancer but it did make the side effects less horrible overall.

October 16: Ways To Help

So your friend or loved one has been diagnosed with Metastatic Breast Cancer. What can you do to help?

1) Don't tell them to be brave. Chances are, they're putting on a braver face than you can imagine because they don't want to worry you. Actually, go read (or re-read) the four-part entry on what not to say (Oct 8-11, 2014)

2) Ask what you can do to help... and follow through. If they answer and it's in your abilities, you made the offer. Nothing stinks more than being offered help, and having that help disappear when specifics come up.

3) Offer to do housework. Especially if they're undergoing radiation or chemotherapy, they might want to be able to clean the kitchen or do laundry, but lack the energy.

4) Make up casseroles that freeze and reheat well. First, be sure to account for their personal tastes and any weird taste glitches that treatment has brought up. For the last few rounds of my chemotherapy, I could not stand the taste of meat, especially chicken and seafood.

5) Find out if there's any supply they're going through quickly, and pick up some extra and surprises them. I went through boxes of tissue rapidly while on chemo due to increased sinus drainage and nosebleeds. I also started going through bottles of RealLemon juice, added to my water, since I could no longer stand the taste of plain water. I also snacked on dried, sweetened ginger candy to keep the nausea at bay.

6) Offer to drive them to and from chemotherapy and radiation appointments. If they need a ride or have been driving themselves, offer to help share the burden so they can rest on the way home. Plus, the company during infusion can be nice to have.

7) If they have a caretaker, ask the caretaker what you can do to help them. Sometimes the best way to help a cancer patient is to help the people already helping them.

8) Let them talk to you about what they're feeling. If they're having a bad day, let them vent without panicking that they're giving up. Avoid giving them empty platitudes, just give them an ear to listen and a shoulder to cry on.

9) Spend time with them. If they're currently in active treatment, they might not be up for going out and doing very much. Coming over and watching a movie with them and just spending time with them can be priceless, especially with how little time we might have left.

10) Offer to accompany them to doctor appointments and take notes. It's hard to listen and remember everything that's said, especially with chemobrain being a thing. It's difficult to pay attention and take notes while interacting with the doctor, and having an impartial pair of ears listening can be a real boon.

For even more ideas, check out 44 Ways to Make the Day of Someone With Cancer by Elana Miller MD.

Your Singing Mammogram

Last night, I hopped onto Twitter just to check what was going on over there since Facebook was quiet and was boring me, and I caught a tweet made by Lori, the president of METAvivor.

I clicked on the link to see the video, and my jaw dropped. I'm deaf, I couldn't even follow what was being said, and even taking that into account, what I saw was so mind-numbingly offensive that all I could do was make incoherently profane sounds and anatomically-impossible suggestions for the people who thought it up. For your viewing "pleasure", it's below:

And of course, this comes on the heels of me bitching about the sexualization of breast cancer. I've been getting bits and snips of this travesty from other people, trying to formulate a post of my own about this. I seriously can't even with this video. Every line I learn, my brain hops back into incoherent rage mode. But this is what friends are for. Lori made an excellent post of her own, #AllKindsOfWrong, and Sara, the best maid in our wedding party, put together a line-by-line of what's wrong with this video.

Ooooh, wow. Where do I begin? First off, that was the longest, most annoying minute of my life so far today.

Right from the start, it annoys me. The nonsense-syllable intro? "Boobs, ba-boobs, ba-boobs, ta-ta tas, boobs..." Oh, -please-.

"Dudes and babies love 'em,/It's fun to squeeze and hug 'em..." Yes, thank you. Thank you for reducing my worth to a pair of breasts, on legs. Because the rest of me is not huggable at all--just my breasts. Thank you for reminding me that they have two purposes: For Being Groped, and For Feeding Sprogs. Because it's -certainly- not enough to just let them be 'a body part'.

I could be mishearing this one; it's a bit mushy: "Big cups or double-Ds, E and, we love 'em Gs..." Yes, because mammoth boobs are the ONLY ONES THAT MATTER, duh. Anything smaller than a D-cup? Apparently, you do not matter. (Note: the line is actually B-Cups, but the comment still stands. A-Cups are ignored, and oddly, C-Cups are only implied. The less common DD, E, and Gs are sung about because massive boobs.)

"They jiggle in loose tees/And extra-perky in the breeze!" I don't even. Again with the implication that breasts serve no other purpose than to please men, and we are -obligated-, as women, to entertain them with our breasts.

"Depending on the rack,/They sometimes hurt your back." I don't know. I just found this line, sung by a bunch of guys, who will never have to deal with that sort of issue, to be incredibly condescending. Almost along the lines of the "It's all in your head!" sympathy they give when women suffer from PMS: "How could you possibly SUFFER from something as awesome as BREASTS?! You must be imagining it."

Then there's this nonsense mumbled stuff about the pleasure of removing your bra after a long day. Whatever, dudes. It comes off as them chuckling and head-patting...oh, those women and their brassieres...more lady-sorcery we do not understand! BRAS. HOW DO THEY WORK.

"It's important and we're begging you, please.../Take care of those boobies!" If the sentiment was, 'Regular breast exams are a critical component of your preventive care regimen', then, okay. I can accept that. But the entire feel--no, I take that back--TAINT of this video gives the undercurrent of, 'If you get breast cancer, you'll have to get a mastectomy, and THEN what will we ogle and squeeze?! YOU OWE US, LADIES.' And maybe I'm just reading too much into this. But to me, the video -oozes- light-hearted "tee hee, look at us, we're so cute!" There is no 'serious reminder of health issues'. And it comes off as 'it's not THAT serious', too.

"And please don't forget to share this reminder to check your pair." Most women I know would be offended by this, why on earth would I share it?

Ugh. I feel dirty now.

 Another thought I had, after stepping away from that morass of everything tacky and tasteless: it ONLY concerns women who have not been diagnosed with breast cancer.

Maybe that's the whole point, and maybe I'm missing that point, and maybe it's just that, a year ago, I wouldn't have even given it a second thought. But, knowing you, and being here with you as you go through the treatment and the stress and the heartache of dealing with breast cancer? It kind of -cheapens- what you're going through. Turns it into a song-and-dance number, makes it sound like this funny, cool thing ladies should do. Oh, and if you get breast cancer? You horrible harridan, you DID NOT TAKE CARE OF YOUR BOOBIES. HOW. COULD. YOU. WE EVEN SANG AND DANCED ABOUT IT!

To me, Prevention, Treatment and Management should be bosom buddies (no pun intended). One should not be given the spotlight, while the others are overshadowed, because prevention is the fun one! It's the pretty one that isn't sick yet! What's the point of prevention, if no effort is made toward exploring treatment options and efforts to improve the quality of life for people (yes, men and women both) who suffer from breast cancer?

AND THAT'S ANOTHER THING I just thought of. This whole video COMPLETELY excludes the men, completely. It doesn't cover the fact that they're at risk, too, and makes early detection seem like Womany Sorcery Stuff, No Boys Allowed. And that's a crying shame, because what do these poor men do, when they find themselves adrift in a sea of pink, with no lifebuoys left out for them?

Susan G. Komen, you disgust me, in ways I never thought you could.

I couldn't have said it better myself. And in case an example is needed to prove that one doesn't have to resort to offensive, condescending, ninnyhammer claptrap to promote awareness, here's the video from METAvivor.