reestablishing my inner growl

1 May

Blog post from my little sister Katie
Jun 25, 2008
“My big sister is cooler then your whole family”
some day i want to be just like my big sister she is so brave, sure she might get scared sometimes but that’s because she is human. but i think she might also be a super hero. she fights things and helps people. i think that is what super heroes do. she can wear blue and orange together and still look awesome plus now she has these neat cowgirl boots. i can picture her riding on the back of a great panda wearing a silver cape and some sort of mask and a cool belt with all sorts of gadgets on it. point is she is really neat and stuff.
she puts the Grrrrrr in Grimes. i love you jennie.”

And there it is. The first time I ever considered putting the “grrrrr in Grimes” and thought that perhaps through all of this I could surely muster up superpowers of some type.

Life didn’t deal me the easiest hand from the get-go but three years ago things shifted dramatically when I was diagnosed with cancer. With the greatest blow last summer when it returned as Stage IV breast cancer- metastasis to my bones.

And so, this is my “new normal”. My day to day. And to be honest I am not sure what to write anymore—how vulnerable to really be, how honest, how happy or how sad. But really all that I can ever be is me and as many of my friends know “that Jennie Grimes doesn’t have a filter!”

So this blog will just be me… Me as I do my best to put the “grrrrrr in Grimes”– to live fiercely, love deeply, feel freely and fight my damnedest. I am at battle with something that lives inside of me—that ebbs and flows in my blood stream, that grows like poison ivy, takes my energy, my time and leaves behind scars, tattoos. My worst enemy is a part of me and has forever changed the course of how I “thought life would be”. But in all of the ugliness, there is overwhelming joy, happiness and a distinct awareness that life is beautiful.

Last June, a month before my 30th birthday, I was told that I had 56 months left to live and that many of those days would be filled with doing all that we could to gain even two or three months more. Days of radiation, pills, chemotherapy—that I no longer had cancer that could be “cured” but rather I would forever have cancer. Forever?

At 30 years old I began to put together my Power of Attorney, discuss funeral wishes with my mom and plan out my treatment schedule while friends my age were planning weddings, buying houses and having babies. While their lives seemed so full of life and growth, I felt stunted, lost on how to make plans when I wouldn’t have the time to fully live them out.

And what’s a girl supposed to do with 56 months!? For the first few weeks, I was in shock and cried about how many months I was doomed to by a goofball calculation.  I was moping around when it finally dawned on me that I really didn’t have any idea how many years that 56 months even made! And guess what—I stumbled upon the diagnosis loophole. 56 months = 4.6666666666666666666666666666667!! Holy math Batman! In theory my diagnosis is a never ending number that goes on for ever…BOOYAH!! (at least that was all the math that I was willing to give in to once I came up with that answer!).

So the next phase—how to live now?

For starters, I got sober. I took away the alcohol that left me numb, that blurred my emotions and left me hiding out in Wrigleyville bars and instead started to face this beast head on. And let me tell you, as hard as it is to look cancer in the face—it is even tougher without margaritas!😉

Next, I opened my heart. To real friendship. To love. To hope. I started to show up for people in a way that really mattered and decided that whenever I got too caught up with what was going on with me—I would reach out to someone and send them some love and care. A card, a text, another batch of cookies for the office. I allowed myself to have true connections and really give to others.

And as good as this all has evolved to be. It is so damn hard at the same time.

The ever so trustworthy “Urban Dictionary” describes “grrrr” as feelings of angst, apprehension, or intimacy. And perhaps that sums it up best—because through this fight I feel a jumble of angst, apprehension while still surrounded by beautiful intimacy, love and care.

It is impossible to describe how much it pains me every time I have to pick up the phone to tell my mom more bad news. “It spread.” “The clinical trial can’t accept me.” “The treatment options are now limited.”

Most days—I am beyond scared and I can not begin to describe what this feels like. To know for the next six months I am facing chemotherapy every day (especially just when the weather finally got warm!!). I am terrified to start these pills—my twice a day reminders that I have cancer and that at 30 years old, my life will always be this way. To wonder each day— “Is it working?” “Is this worth it?” I pray every day that I will be strong enough and healthy enough to make it through the weddings of two siblings and six of my best friends this summer—“God, please let me be healthy enough to be there.” (And sometimes I throw in a shallow note, “and…if you don’t mind, please let me look fabulous!”).

I suppose sometimes it is easy, when I think to what one of my best friends and cancer survivor told me when we went through chemo together the first time. “It’s like walking the tight rope…just keep going and don’t look down.” And I will do just that.

So join me friends on chemo eve, as tomorrow launches 168 days of mind fully fighting this sucker. I hope that you can gain some peace during this time as well and I challenge you to keep a “grrr”atitude journal during that time. Help me put the grrr in Grimes by taking advantage of the health, the love, the ability to fully plan out your dreams—then go seize them.

Love and cheers to Day 1 of 168!

a voice

25 Mar

A voice.
Mine has been missing for some time. Locked away from the outside world, stored in writing journals, and assorted notebooks. Told in my writing group at the cancer center, or read aloud to Connor. It is hard to share your voice – to open the heart, the soul. To expose ones vulnerability, especially during life’s most crushing times. Yet there is also power in doing so. A control over ones experience in how we chose to react to it, to tell it, to change the world with it. I suppose that is why I refuse to lose my voice again. Or allow someone to take it.

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You see, last May on Mother’s Day– I shared the most gut wrenching part of this journey here. The choices and loss of fertility that comes with a stage IV diagnosis. I bore my soul, and my journey through the toughest decision of my life. Only to have a cyber bully repeatedly comment, on various days with the following,

  1. “I’m on your side but even if you could pull this off this is a baby without a mother. Eventually.”
  2. “Why do that?”
  3. “I realize you can but why would you do that?”okay…but the real kicker…
  4. “What are you doing? How can you do this? All these people have to come together to make this happen. Far from trivial. What the fuck are you doing? How many babies have to live without a mom before you get it? This blows. Grip it.”

I was speechless. How could anyone- especially a stranger not even connected to me or the breast cancer world- post such horrific things? Not just one time. Or two. Or three. But four separate occasions??

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And sadly, it wasn’t just this instance of “bullying” but there several other times when what I have shared in this blog has been used to attempt to ruin experiences or to cause me substantial harm. For the last ten months I allowed these voices to silence mine. I kept my voice at a whisper. Communicating with my online community- with an Instagram photo, an emoji, or brief caption. Building to 164 character Twitter share or retweet. Yet not wanting to expose my heart and story through another blog.  Yet more and more I am rediscovering my voice, its importance and the change that it can possibly bring for the better.  Through advocacy training with Living Beyond Breast Cancer, fundraising for Metavivor, and most importantly pushing forward MET UP– my voice can no longer remain silent.

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That is why I openly wrote a letter on behalf of MET UP to the National Breast Cancer Coalition (NBCC) after their call for suggestions for their 2016 policy priorities.  I was sent a response by NBCC’s Executive Director, Fran Visco, that did not equivocate to any change for those living with  –and dying from- metastatic breast cancer (MBC, also know as stage IV).  Fran’s response said that their board members “care more about their daughters’ futures rather than their own”.  A luxurious place to sit and elicit such a response, as it means that you were gifted the opportunity to have children, and that you will live long enough to see them grow up and possibly benefit from it.

In no way do I oppose this work to prevent breast cancer or prevent metastasis.  To pave the way for a better future from anyone ever receiving breast cancer in the first place. For I have lived as woman without breast cancer, with early stage disease, now with advanced breast cancer and live with the urgency that metastatic cancer so greatly needs.  I find it negligent for NBCC – or any cancer organization- to not include those that are losing the most from the disease- their lives.

Fran’s letter was not just her placating acknowledgment to my request to include MBC in the dialogue, but surprisingly also included an invitation to their yearly Artemis Project.  An invitation that I am pretty certain NBCC didn’t think I would accept on behalf of MET UP, and RSVP that took our group sometime to decide on.  You see the Artemis Project is NBCC’s two pronged approach to “end breast cancer by 2020”—something that they have turned into a tag line as “Deadline 2020”.  However since NBCC’s Deadline 2020 inception in 2010, over 212,363 people have died in the U.S. from metastatic breast cancer. That is one person every 13 minutes.

No wonder we jokingly refer to it as “DeadBy2020”, and this number is only set to double in the next 4 years.  The problem as we see it lies in the focus being on two ideas: 1) prevention from breast cancer and 2) prevention from metastasis.  With no mention or investigation on how to approach the disease once it’s become metastatic.  WTF, right?  So, that’s means the biggest lobbying entity in breast cancer places none of their focus on ending breast cancer on those most crucially hit by the disease and dying from it.

Prevention is a great element to include in the dialogue but to not include looking at cancer once it is metastatic- it’s mechanisms, how it moves from bone to lung to liver to brain, the microenvironment of these cells and their proliferation, how we could create more life-extending therapies to turn breast cancer into a chronic condition like HIV- is completely irresponsible.

How can the National Breast Cancer Coalition ignore those with MBC? Even after being repeatedly approached by two metastatic organizations-MET UP and Metavivor to be included in the dialogue? (read the letter from Metavivor’s Executive Director to NBCC here!)

The other kicker about the invite to this meeting, is that it is held in Napa.  That’s right— Napa.  At a four-star resort, with Michelin rated dining.  Let alone the cost of flying mainly East Coast based researchers across the country to San Francisco International, the costs were additionally racked up with individual town cars driving the extra two hours north to wine country.

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Staying three nights at Solage, was an unneeded exclusivity for this meeting.  A meeting agenda so packed that the location was irrelevant, as no one had time to enjoy it.  Fine by this five-year sober Metster, but again made the expense obviously unneccessary.   A researcher in attendance told me that it was his third year in attendance, yet had still never visited a single vineyard there.  It was as though he had never been to Napa, and not sure why they even bother to have it there.

Perhaps this all seems irrelevant, but with the recent scandal of other non-profits mishandling donor funds for lavish expenses this really seems to resonate (i.e.- “Wounded Warrior Project Execs Fired After Lavish Spending”).  I know that when I give to a cancer organization it is not with the thought of flying their staff first class to Napa, but rather to do everything possible to cut down expenses and make a tangible difference- each and every day.

Lavish costs are even more striking, when you consider that “only around 7% of breast cancer research funding is specifically allotted to finding a cure for metastatic breast cancer” according to a recent landscape report by the MBC Alliance (a collaboration of over two dozen cancer organizations to review the multiple issues of MBC…note here the NBCC is NOT a member). So with only 7% for research- every penny truly does count in this crisis.

A friend tried to ease my frustration when I vented to her about the Napa location, by  telling me that wooing and planning meetings at destinations like this are important to bring the “best people together”.  But I must argue that the absolutely “best people” are those that do not need luxury resorts with turn down service to inspire them to end breast cancer.  They just do it.  They do it because 113 of us are dying a day, and that fact moves them regardless of the thread count and spa amenities promised.

Sooooo, the members of MET UP were torn.  We could have a seat at the table.  In Napa.  With a cancer organization that doesn’t recognize us in the first place.  Or we could boycott them, and not have a voice at all.  Before making the final decision, I had phone calls with directors of the two other major non-profits that focus on metastatic breast cancer, learning that one had never been invited to the meeting, and the other was an attendee in the past but not invited this year.  With MET UP, as the only Mets organization even given a seat at the table, we decided that a voice, especially in front of the other participants, was better than having no voice or representation at all.  So a mere four days after chemo, with my diaper on, and three neupogen shots in my belly off I went.

The trip alone to Napa was exhausting, as El Niño storms rocked Northern California that week with flooding, downed power lines, and fallen trees blocking the streets. After arriving nearly three hours later than planned, I dropped my bags at the front desk and headed in to the meeting where I was immediately flogged on either side by the meeting facilitator, and an NBCC board member (again, notice there is not a MBC organization represented…). I was told of how the meeting would run—a few presentations each day, followed by open discussion.  No mention of ground rules, non-disclosures or privacy of what would be discussed.  So, no problemo on my end.

We next moved in to introductions, and what brought each of us to the meeting. Of the 53 participants, only six had ever been diagnosed with breast cancer.  Of the other six advocates, all were early stage and had not been in treatment for over 10 years. Around the room I heard, “I am a 16 year breast cancer survivor…” “I am a 25 year breast cancer survivor…” and so on.  A wonderful thing for these women, but showed how far away they sit from the ever presence of cancer. From the urgency.  From the pressing need to be an ally to those with MBC.  These other advocates had not been through the rigors of blood work, chemo drugs, appointment, scanxiety and more for over a decade, let alone the four days since my last infusion.  It was beginning to make sense to me that NBCC did not know my voice, because they had selected advocates that could not reflect it.

Not only was there no one else there with metastatic disease (or that had even been in treatment for 10+ years), there was no one of color – strikingly important as African-American women with breast cancer are 42 percent more likely to die from the disease than white women. With a thorough analysis by the Avon Foundation further showing that in some cities, like Los Angeles, a black woman with breast cancer is about 70 percent more likely to die from the disease than a white woman is.  What in the actual fuck!?  And where is their representation at the table?

** and a reminder here, that when you here of someone dying from breast cancer, it is from METASTATIC breast cancer.  It is only once breast cancer has left the breast, and spread to other organs is it able to kill you.

Also missing from the NBCC round table, was any representation of the small, but very real, number of men that are diagnosed with breast cancer. Men diagnosed with breast cancer also have a higher mortality rate than women who are diagnosed do.  This is primarily due to awareness campaigns leaving men out of the conversation, thus they are less likely to assume a lump is breast cancer, which can cause a delay in seeking treatment. It is often thought that these men are carriers of the BRCA mutation, which does give them a 1-10% lifetime risk of developing male breast cancer, ten times greater than the risk for men in the general population but this does not speak for the whole population of men who are diagnosed. It is estimated that only 5% of men diagnosed with breast cancer have the BRCA gene, yet there is so much with male breast cancer that we simply don’t know as it it is another under-researched and underserved group that is left struggling for recognition and research. Again, another seat absent from the NBCC dialogue.

It was as though the voices selected by were the whitest, most cancer-free ones they could find.  Those “most privileged” in cancerland.

When it came time for my introduction, I not only myself and the work that MET UP does, but also really challenged them to think of the 113 of us dying each day, who are not discussed at this meeting.  Who are not included in NBCC’s “priorities”.  Nodding heads, silence,  Then on to the next intro…and the next…till finally we were asked to share any “burning thoughts or ideas” before bed the meeting adjourned.  Likening this to an AA meetings call for “burning desires” to hear from those in the most dire of circumstances,  I raised my hand.

This time, with the microphone in hand, I asked the group to consider an additional portion of the meeting (adding, not subtracting from what is already being done) to focus on metastatic breast cancer. That as we scramble to create prevention strategies, it is negligent to completely ignore those dying from it.

That research on early stage breast cancer and prevention strategies does not necessarily translate to the metastatic setting- these breast cells are now in the liver, brain, bone, or lungs- and have a different response to those encapsulated within the breast.

That if we can work to eliminate the fear of death from breast cancer by extending life for those with MBC, then we will have resolved the biggest fear and worst outcomes from the disease.  That yes, the treatment, and hair loss, and mastectomies and surgeries would still be horrendous, but by prolonging life, we could change the 33 month survival rate for those with MBC and change the perspective for all.  That the scariest thing about a cancer diagnosis isn’t if my hair will fall out, it’s, “Holy shit, am I going to die?” And if we could change that, we could potential have a great shift.

My statement was again met with silence, yet on my way to my room that evening, I was thanked by several of the researchers for the comment, for the reminder.  That the researchers know we need more resources, but that “research for MBC is complicated” and isn’t “an easy laboratory problem to show results or to solve so many researchers focus else where”.  As I laid in bed that night, I was exhausted just trying to think– where do we even begin to fix this??

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The 8 am start time the next morning came about 3 hours earlier then my normal wake up time on chemo weeks, but I rallied. Dressed in a work skirt, heels and tights that are now buried in my closet since going on disability, I headed in.  Yet before I could even set my bag down or grab something to eat I was approached by another NBCC advocate in a conversation that was nothing short of bullying.  With no one around, she went into a spiel how this meeting was not about metastatic breast cancer, and that it was not the space for “my personal agenda”.  That this meeting was around the work of the Artemis Project and that if I couldn’t contribute to that work then I should consider why I came and if I should leave.

I responded calmly (I hadn’t had coffee yet), with the state of metastatic disease and offered to give her a copy of the letter I had previously submitted to NBCC stating MET UP’s needs and priorities. That this agenda was not “mine”, but the valid concerIMG_5871ns of those in the metastatic breast cancer community who are being ignored by NBCC. I went on to say that I was the only person in the room with metastatic disease in the room so it was even more imperative that I gave a voice to our needs when applicable.  She then fired back with one of my LEAST favorite things to hear from someone who has never lived through the slogging journey of MBC, “You don’t know if you are the only one with Mets.  Anyone here could have progressed and just not know it, so you don’t know.” To which I replied, “You are right, we don’t know.  But I do know that at this point in time, I am the only one here giving a voice to it. And the only one here dying from it.” Speechless she left, and I was able to finally able to grab coffee and try to eat, on what was already a long day.

As the meeting got underway, I started to “live-tweet” my experience.  This is something that many of us with MBC do for each other as a way to share the information and slides with those that are too sick to make the trip,  can’t afford the cost of travel, or were’t granted the limited opportunities attend.  Many in the health community have taken to social media as way to share information with the masses, and MET UP had already implemented this at other meetings and conferences (the San Antonio Breast Cancer Symposium, the MBC Conferences by LBBC & MBCN, presentations at the  medical institutions where we receive treatment, and more). It is important to leverage our tools of social media to deliver the information to those most in need of it, and also to use it as a means of sharing feedback- negative and positive. Never having been a problem at any event before- and without having any direction, as to NOT do this- I began to capture the general slides and info that were being shared (no CIA cancer secrets) and tweet them to my metsters.

But apparently my Tweets were not just being read by my supporters, but were watched by NBCC staff as well.  At the lunch break , I was again pulled aside- this time by the facilitators of the group.  They took me to a corner of the conference room—without the other advocates—to tell me that they were having a serious problem with my tweets.  That some of the researchers had read them (extremely doubtful) and that they were in fear of (1) being criticized by me and (2) that their data yet to be published so it should not leave the room (p.s.- free the data!)

Furthermore, that I should seriously make a decision as to whether or not I even wanted to be in attendance at the conference.  That I knew what the topic was before coming and that I was not to steer it off course with “my agenda”.  That I should think long and hard if I could contribute in a meaningful way, and to not share anything that was going on outside of the meeting on Twitter or elsewhere. That I was to remain silent on what was happening and again, “not speak of my agenda”.  It was quite the tag-team as they tried to strong-arm me into resignation, and my silence as I took in how insane this all was seemed to leave them even more infuriated.

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Without a resolution reached, I went back to my room for some perspective, and to call Beth Caldwell– MET UP’s co-founder and a close friend- for feedback.  Should I stay?  Travel back?  We can’t stay silent about things that we see as wrong, but we also want to show that MET UP and members of the MBC community can be professionals and work with the researchers.  actup2

So I thought to a story my friend Matt Sharp had told me about his work with ACT UP when they took on the FDA, that not only did they have protesters outside of the building yelling with signage and outrage but they also had someone at the table simultaneously.  That this work doesn’t need to be done as an either or, but in tandem.

AIDS EPIDEMIC 1990

Fast forwarding this principle to the age of social media, Beth & I quickly figured out a plan.  I would remain at the meeting. Staying present with the researchers, and their prescribed subject matter of prevention while those from MET UP and the metastatic community would use Twitter, and Facebook to “bang on the gates”.  As I logged off my social media and returned to the meeting, Metsters took to their lines of communication and blew up #NBCC.  It became a trending topic and gathered speed as the meeting went into #MetsMonday.  Perhaps they could silence one of us, but there is no way that they could silence all of us.  As our AIDS predecessors taught us, “Silence =Death” and although we may be dying at the same numbers of those at the height of the AIDS epidemic, we refuse to do so silently.

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Sitting through that meaning, forced to remain silent was another reminder of how important a voice is. And even though I was quiet, as my friends virtually screamed and protested, I was able to sit at the table and walk away with new allies and connections at Harvard, the National Cancer Institute, the FDA, Dana-Farber, Vienna, and more.  Let’s just say I must not have been too horrible or unapproachable while there– I have several new researcher Facebook friends =)

Were the tweets heard?  Did it make a difference?  At one point, Dr. Susan Love (who wasn’t too thrilled with MET UP’s advocacy we learned at SABCS) came to me and said “We saw the tweets…” and walked away.  Not much of a response, but I’ll take it.  I also encourage you to read through the tweets, our messages of protest to NBCC and post some new ones! https://twitter.com/hashtag/nbcc.

NBCC continues to ignore the metastatic community, and I suppose that they bank on the fact that we will be #DeadBy2020.  Yet we are a growing number, and even as some of us die from our disease and are weakened by our treatment,  I have now learned that we are a strong number that can collaboratively bang on the gates for change.

That all of us- YOU, the reader included- can challenge the organizations that are supposed to be representing us, lobbying for us, spending our donations, and push to see if the work is really being done.  I ask that if you are involved in an organization that has signed on to support NBCC’s #Deadline2020 (you can look that up here), that you bring the letters from both MET UP and Metavivor to your meetings, to educate and rethink your support of NBCC.  Perhaps letter withdrawing support would finally force them to make a change.  Heaven knows that the thousands of my friends dying each year won’t, so perhaps a more public stand will.

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So you see, my voice has finally bubbled over, as I return to weekly chemo and almost daily Neupogen shots to my stomach that cause intense bone pain that neither fentanyl, morphine, or for those in the know, Claritin can conquer.  For as I sit week after week being infused. Accessing my port. I remember that I have a story to share . We- those living with metastatic breast cancer- have a story to tell. And I will raise up my voice, and use every breath to tell it until people like me are no longer going to weekly chemos, losing their fertility, and most importantly losing their life.

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So I am putting my voice out there to fight against those that are not including MBC needs and research agendas.  I am putting it out there to share what this journey is like.  And at the risk of having Internet Trolls hate on me or to never be invited to Napa again- I have decided that I will not be silenced.  We will not be silenced.

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Join me & MET UP in lifting our voices on Saturday, April 9 from  6 PM8 PM in Philadelphia, following the LBBC Metastatic Conference. Activities will being with a Die-In to represent the 113 people who die of this disease in the US every day, followed by a candlelight vigil to honor our lost friends, and find solace in each other’s company.


Event information, and to RSVP here.  If you can’t attend, but want to support MET UP’s advocacy effort we would love your support.  We would love any and all media support, and have a press release available for the event.

Philly Die In Flyer 2016

Also we are in the process of finalizing our non-profit status (squeal!), and still in need of immediate donations for the 400+ candles, permits, posters, etc.  If you are able to help with these specific needs (Kinko’s or FedEx for making larger banners, Amazon for candles and various other materials, etc), please let me know or donate through Paypal via jennie.grimes@metup.org.  Unfortunately, until we are approved as non-profit (SOON!) donations are not tax-deductible.:-/ Thanks in advance, and oceans of love xo

Also, please check out the MET UP Facebook page to stay up to date.

 

mother nature

10 May

“The stars come out lighting a deep blue sky
When mother nature sings her lullaby
The moon bends low kissing each rose goodnight
When mother nature sings her lullaby
Our cares and all our troubles, Will soon be put to flight
The gentle breeze of evening, Will blow them thru the night
Each heartache gone, many new hopes are born
When mother nature sings her lullaby”

If there is one thing that you know about my cancer journey, it’s that nothing makes me cry faster than talking about my inability to have children after years of ongoing treatment and chemotherapy.  Which is why what happened, seemed like such a miracle.

You see, when we were forced to switch my chemotherapy this past September to the weekly Navelbine that I’m currently plodding through, my oncologist decided to stop my hormonal based treatments as well.  This ended my monthly Lupron injections (an ovary suppressor to help limit the estrogen in my body) that I had been on for over three years.  A pain in the butt (literally, they stick a huge needle in your ass) that chemically shuts down the ovaries and throws you into menopause.  The hot flashes, mood swings, lack of libido…none of it fun stuff.  Especially not in your early 30s.

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For pre-menopausal women with ER+ metastatic disease, this is a standard of treatment.  To shut down the ovaries via Lupron or to have an oophorectomy– a procedure that removes the ovaries.  Both put you in to menopause, but the psychological piece of having the ovaries removed is what leaves many women, like myself, holding onto them for no real reason, other than permanent heartbreak.

Which was unavoidable really.  The hardest part of receiving my Lurpon shot each month, was that it was one firm reminder.  A stabbing moment of knowing that it was rendering me unable to have kids. That this shot was shutting down that ability, and every-single-time.  It broke my heart.  I would always come out of that appointment with tears streaming and Connor taking me in his arms.

So when the ovary suppression was stopped this past September, I didn’t give it too much thought.  With new progression all through my chest wall and my limited ability to breath, all thoughts were on my cancer.  Plus my grief over the inability to have kids had been discussed through numerous counseling sessions, journaling and support groups.  It was a loss that I knew was not only a part of these injections, but from years of ongoing treatment, radiation and chemotherapy. As I was never offered much in terms of fertility preservation back in 2007, the likelihood of reproduction seemed to have been erased long ago.

With the hormonal treatments stopped (which acts as a birth control since the ovaries aren’t in action) my docs pushed for a mid-year pelvic exam with the gynecologic oncologist, as well as to discuss the placement of an IUD or finally bite the bullet and have my ovaries out.

And it was then, in the middle of that appointment.  With an ultrasound of my uterus and other parts that I had long since forgotten their use- the doctor pointed it out.  My ovary was WORKING.  My little left ovary was not only functioning, but had grown follicles.  Was even, the doctor said, soon to release an egg from what the imaging showed.

If the ultrasound wand hadn’t been pressed against my gut, there is no way that I would have believed a word of what he said.  But there it was.  My own little ultrasound.  A picture that most girls my age are usually at these appointments for.  To see life.  To see growth.  To see…health?

I burst into tears, and then sheepishly asked the doctor if I could take a picture of the ultrasound screen.  He looked at me a little oddly until I said, “That little follicle may be the closest that I ever get to a baby.  It is more than I ever thought I would see.”  So I “selfied” my ovary and left with a swirling mind.

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Thank goodness for Connor.  As I leapt with the amazing thoughts of what one working ovary could mean, he reminded me that in Estrogen Receptor (ER+) breast cancer,  that this might not be for the best as it may actually be an influx of estrogen that my type of cancer lovvvvvvvvvvvvvves.

So I wrote these concerns to my oncologist who quickly responded:

Wed, Oct 22, 2014 at 10:43 PM

Hi Jennie,

Since we are utilizing chemotherapy right now it is okay that your ovary is functioning.
I am fine with you doing a round of IVF/fertility preservation procedure. You would need to be off chemo I imagine during this and I would not want you to be on hormonal agents (estrogen/progesterone shots) given your tumor is estrogen sensitive but if there is a way to do a fertility preservation procedure relatively quickly without long term use of these agents then I would support that. We can talk more at your next appt this week too.

Best wishes,
Sara 

HOLLLLLY SHITTTTTTTT.

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So we moved ahead.  In November we had a consultation with a fertility doc at the UCLA OBGYN Specialty Suite for difficult or abnormal cases.  But all I knew on that day, was that I felt more special than specialty.  Connor and I sat there and got to talk with a doctor about cells dividing- not in the cancer causing way, but in the baby making way.  We were able to talk about blood work and tests- with not a single one of them having to do with oncology.  And when my blood work came back later that week, it wasn’t about tumor markers or low counts, but rather it sang with good news that my FSH, Estradiol, and a number of fertility lab markers that I had never even heard of, all came back GOOD.  For the first time in years, I was acing my medical appointments!

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After a two hour phone consult with another leading fertility specialist, they all seemed in agreement. This was something that we could do. That we could do egg retrieval for one cycle-mayyyybe two- using lose dose estrogen and even another drug (letrozole) to further suppress the estrogen uptake in my body.  Chemo would be potentially halted for a one month time period to gather the eggs, filter for the best of the bunch and then freeze some eggs and embryos.  The only problem was that, the fertility specialists nor my oncologist had any experience of doing this while someone was on chemotherapy.  Oncofertility has grown leaps in bounds in counseling young patients prior to starting treatment to preserve eggs or bank sperm and have worked with numerous survivors on the other side of chemo and treatment to safely become pregnant despite hormonal status (yay Lauren!).  But throughout this process, I was never able to speak with any specialists that had done egg retrieval with a patient while on chemotherapy. And it was this unknowing that I think moved Connor into a place of reconsideration.

And truthfully, it was hard for me to hold on to the excitement or hope for very long either.  Because not only was I going to these appointments, I was also still going to my weekly chemo, injecting myself with Neupogen shots, and meeting with the palliative nurse- sometimes all in the same week.  And yes, all while bald from treatment.  It didn’t make any sense.  I mean you never see anyone with a baby while at chemo.  And they don’t offer child care at any of my support groups.  I started to think how ridiculous this all may be once I played it out.

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Cancer had previously swung me to the highest of highs and lowest of lows, but through the month of November I don’t think I had ever been thrown so quickly between the two.  To face the realities of my death while meeting with the palliative nurse, while also talking about the possibilities of life with the fertility specialists the next day- it was surreal.  Not to mention that this was nearing the holiday season, and for Connor, finals at law school.  Triple threat of stress.

So how is one to make these decisions?  While balanced between life and death? When working so hard to be the person that is that miracle, that is the outlier yet still so aware of my friends dying every day from this very disease?  How is one supposed to lay plans, to hold hope, to think of the future while also doing ones will, power of attorney and plan for hospice care?  I was caught between the two most extreme counterpoints- life and death- with few resources, guides, or direction.

So I googled.  And went to counseling.  Talked about it in support group.  And journaled. And cried. Went to AA.  And to the beach.  And I then went to those closest to me.  Nearly begging all of them, to just tell me what to do.  What is the right choice in this? To my Mom, to Connor’s Mom.  To my best friends. The UCLA Chaplain even sitting with me for hours at chemo, talking it all over-admitting that he had never had the kid question come up in the infusion room before. =)  And of course amazing Connor- supporting whatever we wanted to do as long as the process would not accelerate my cancer.

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Through special programs at Livestrong (previously Fertile Hope) and another organization called Fertile Action, I would be able apply for the needed fertility medications for free and all costs, including the egg/embryo storage for five years would be $5,000.  We had no idea where $5K would magically come from but apparently that’s a bargain in the baby freezing business!  Even with all of this, we would still have to use a surrogate down the road- a cost estimated to be $20,000 minimum. I would not be able to ever carry a baby due to the influx of estrogen that my cancer grows on and secondly, because my oncologist could not treat my cancer during those nine months.  Pregnancy was described to me as “one of the worst case scenarios” for my health.

So here it all was. The window of opportunity.  A blossom of hope, in what had felt like a winter.

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Yet, my heart could still not climb over the what ifs.  The what if this does push my cancer quickly, and this is all an unfilled dream, mistake, and quickens my death? The what if, a miracle happens and I live long enough to see this baby born, what is the realistic number of years that I would ever be able to share with him or her?  And if I am not even able to carry this baby, do I need to go through all of the hoop jumping of embryo freezing and a surrogate?  Could we adopt?  Could we foster?  Could my next scans be horrible and none of it really matter?

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I am still not sure what the answer is.  Between scares of brain mets, spinal taps, hospitalizations, weekly chemo, and the ongoing fatigue over the past few months- the circumstances seem to have presented me with a temporary answer.  I am not at a place to put my hope in a freezer, but rather want to focus on what I have presently.  What was thought to be a great  possibility and joy, had instead struck me with an impossible moral question- does one with terminal cancer decide to bring another life into this world?  Is that fair to the child?  To Connor? And selfishly, to me? It is already going to be so hard to leave when that time comes, I am not sure if I can set myself up for that heartbreak as well.

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Perhaps, the reason for the past few months was the ability for me, not cancer, to make the decision on my fertility. Perhaps it was to not just surrender this choice to cancer like so many other things.  That perhaps, the gift is just in being able to choose.

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I may not have come to my final answer yet, especially with scans around the corner, but I wanted to share the past few months.  Perhaps to show the need for women with metastatic disease to have these resources better developed to assist in making such complex decisions and also to connect with others that are newly diagnosed and in need of fertility resources. Sometimes mothering doesn’t happen in the typical fashion but is in the sharing of the lessons that we learn with the love that we have.

p.s.- Happy puppers day!

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a glimmer

17 Apr

There is nothing so deceptive as the distance of a light upon a pitch-dark night, and sometimes the glimmer seemed to be far away upon the horizon and sometimes it might have been within a few yards of us.
Sir Arthur Conan Doyle

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Through the sick days, the tough weeks, the hard procedures, and poisonous chemos- I try to refocus on the glimmers.  Those shiny bits of hope, of goodness, of love, of kindness.   The glimmer is that little bit of light, that makes all of the fighting worth it.  glimmer2

Every treatment, every side effect. The glimmer is what makes the port, losing the hair and wearing the adult diapers okay.  The glimmer is the real stuff in life.  It is that space where I fit right into Connor’s arms. The way that Fala wags his tail in helicopter circles with happiness whenever I walk into the room.  It’s the belly laughter that I am able to share with dear friends.  The glimmer is the sacred spaces that we find and create—in nature, in meditation, in the deep places of life. cry

I don’t look for glimmer, in a forced game of happiness or an antagonizing game of gratitude.  I find that all of my feelings need to be felt.  The big, joyous happy ones to the soul crushing, dark depressing ones.  They all deserve the same space, just as long as I don’t live in the dark for too long. The glimmer is that little glint of light that pulls from the dark spaces, most frequently the cancer induced ones, those shadowy spaces that can be difficult to find our way out of.

The past few days have been tough.  Not tough in the usual sense of the fog and fatigue of ongoing chemotherapy, because I have learned to manage that between “Starbucks infusions” and B Vitamin dosing.  No, this week has been tough because of the journey that cancer has sent my metastatic sisters on.  I have learned how to handle the ups and downs, the unknowing, the pains that require morphine and the losses of my journey… but man, having to watch it play out in the lives of others just guts me.  To the core.

The first three posts on my Facebook feed today- all from women my age or younger- read:

“The cancer has now spread to my brain. It’s four very small lesion that we think were caught early. I’ll likely have either gamma knife or cyber knife on them next week; I meet with the gamma knife clinic on Monday at noon. In addition, we’re moving up my PET scan to this month, instead of waiting until May. It’s possible/probable that I’ll be going back into chemo again as well, depending on what PET shows, including chemo injected via lumbar puncture so it actually passes through into the brain. My doctor is fairly certain I won’t see any cognitive deficits from this, and he’s hopeful that because of the way the brain doesn’t absorb most of the drugs I’m on, that this doesn’t mean those drugs aren’t working on the rest of my body. But we’ll do the PET scan to find out for sure.”
— A Civil Right Attorney now on “sabbatical”, wife, & mother of two

“I learned that my current medication stopped working. This is my second line of treatment for metastatic ( stage 4) breast cancer. I was only on this drug for 6mo and it was working two month ago. I am devastated. Speechless. I feel great physically and honestly I have no idea how I have progression this time. Now the Cancer won’t let me have faith in my body. I left work early today. This disease is slowly breaking me down. I need people to hold me up. I am not giving up but this is not what I was expecting. I am not ready for this roller coaster again.”
— 30 year olds, Master of Social Work in Addictions, cat momma

“I belong to an under 40 support group. In less than a week, we have lost 3 beautiful girls to Stage 4 Metastatic Breast Cancer. Just like that. Their babies lost their Mamas, their husbands lost their wives, their families lost a piece of them and their friends lost a piece of their hearts. Just like that. So quick. Like freaking wild fire. I have no words. I just can’t…We need to do something.”
— Wife and mother of four

And with those posts, I just freeze.  I stop.  I turn off the Facebook and surrender to tears.

After all of the losses from stage 4 breast cancer over the years, I cautiously approach others like me.  My heart shrouded, my arm in a stiffened “Heisman position”, so terribly afraid to get close and love these women.  But as much as I fear that loss, I crave that connection.  I need these women.

Hashtag stage IV!

Hashtag stage IV!

They match my stories about pooping pants, naming our ports and the ridiculous antics of oncology nurses and docs.  They teach me about treatments, managing side effects, and like Tracey, Keeley, Jolene and sadly so many others did, they teach me how to die gracefully surrounded by love988495_10152841051818208_1864251285327996242_n (1).  These women are my guides, my lifeline, my peers.  And seeing their sadness, their losses, their tragedy from this disease is what shatters my heart & spirit.

New friends from Philly

New friends from Philly

Today, I am searching for a glimmer.  A glimmer of hope for us. For our families.  Our friends.  Our loved ones.  Even with the embrace of Connor and puppy kisses or Fala today, my heart was still sagging till I reread the Metastatic Breast Cancer Network‘s press release that they were able to grant $100,000 for MBC research.  Hellllloooooo glimmer!

“In 2014, MBCN made a commitment that all memorial contributions made to MBCN would go to funding metastatic research,” said Shirley Mertz, MBCN President. “We are pleased to present leadership awards of $50,000 each to two individuals whose work contributes significantly to understanding basic knowledge about the process of metastasis and to improving how patients are treated.”

Breast cancer remains the second leading cause of cancer death for women in the US, and it is the leading cause of cancer death for women globally, so every dollar that we can direct to metastatic– stage 4 IV– breast cancer is so very important. Seeing that research is being done for MBC, that awards are being granted to these amazing doctors gives me hope. Gives me a glimmer.  The research gives me some peace for my friends and in knowing that since my own diagnosis four years ago, we have been given new drugs- Xeloda, Afinitor, Perjeta, Kadcyla, and recently Palbociclib.  These drugs don’t work for all of us and may extend life byonly months– but it is progress only possible through MBC research.  It may not come in my time, but every dollar that we can push to fund metastatic research can make a difference.

Check out my glimmer…

1) View these two videos to learn about the new research grants that MBCN funded and to be on the up and up of new MBC research:

Breast cancer patients of all stages are shocked to learn that after 30 years of breast cancer research, scientists cannot fully explain how and why breast cancer cells leave the breast and travel to distant organs, particularly many years after successful treatment for early stage disease,” said Mertz. “Unfortunately, this happens to about 30% percent of early-stage patients—and we don’t know why. How can we optimally treat the disease if we do not understand the processes that caused its spread?”

Watch Dr. Ewald’s amazingly easy-to-understand explanation of metastasis and his work

Dr. Ellis, a pioneer in breast cancer genomics, has been instrumental in developing a Genome Atlas and Therapeutic Road Map for estrogen receptor positive breast cancer. Most recently he has found that metastatic breast tumors initially positive for the estrogen receptor frequently harbor mutations and translocations in the receptor that render the tumor resistant to endocrine therapies used to block estrogen.

Hear Dr. Ellis’s groundbreaking new information about mutations in breast cancer and their clinical relevance

2) Help fund research to “buy us more time”.   Donate the cost of tomorrow’s latte, pint of beer, or a dinner out, even $5 helps and trust me, every little bit adds up!
I support Metastatic Breast Cancer Network (MBCN)  or  Metavivor, and hope that you will too!

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3) Find your glimmer. With or without cancer, I can promise you, glim3that this is the stuff that matters in life.  The laughter, the love, the hope, the kindness.  Find it and create it for others.

(And if you are ever in need, this Fala tail wagging video works wonders for me!)

boston pupsAnd for those living with stage IV, it is time to SAVE THE DATE!!
MBCN’s 9th Annual Conference for those Living with Metastatic Breast Cancer 

October 16-17, 2015
2015 Metastatic Breast Cancer Forum
Susan F. Smith Center at Dana-Farber Cancer Institute in Boston

** I will post more info about registration, travel grants, etc. once it is available!

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taxed

15 Apr

taxed: transitive verb

: to require a lot from (something or someone)
: to put demands on (something or someone)
: to require someone to pay a tax on (something)

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Taxed.  Wiped out. Fatigued. Exhausted. A permanent April 15th, “tax day”.
These are the feeling of living with metastatic breast cancer on a regular basis.  On the rare days when I do wake up the energy to carry about my normal activities, I know that almost always “a tax” will be placed on how I will feel tomorrow.  I hear so many Metsters say, “I know that I will pay for this tomorrow.”  That feeling of having to “pay” for being active, to be “taxed” for tying to operate on the activity level of those without illness, is one of the many unfair burdens of this disease.

A tax that I have been paying on ever since my trip to Philadlphia coupled with the emotional fatigue from our “die in” event.  I feel my own pressure since returning to push myself at every moment and to use every bit of my limited energy to create the materials, and connect with others to push ahead immediately for all is needed for us to #METup .  When in reality, I am running fevers, feeling nauseas and having pains that leave me fearful of black-and-white-pictures-of-people-holding-hands-2-jpgnew progressions and metastases

This is when I am reminded that I do not carry this torch alone. That those in the Mets community, have our allies to carry our message through the sick days and even after our death.  Our caregivers.  Our families.

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Those with early stage breast cancer who should also demand the necessary research, to prevent the 30% that will also progress to metastatic disease.  We are not alone, and when we get too tired, it is okay to raise our baton and pass it to the next person to relay the race towards ending metastatic disease.

So my hand is raised, and offering a few ideas for us all to take our turn with the “baton”.

pass-the-batonFor all of us, with MBC and without:

Visit the American Cancer Society Action Network (ACS CAN) to sign up for alerts about breaking news and actions for all cancer types as well as to use their tool to find your elected officials.  In the coming weeks, MBC Advocates hope to have action alerts specific to Metastatic Breast Cancer, but in the meantime, we can all act on general cancer legislative needs and up our learning curve of where our elected officials stand.  Take the time to do a bit of research on who your officials are, where they stand on cancer issues, and where your voice may be needed.

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  • Please check out MBCN’s “13 Facts Everyone Should Know about Metastatic Breast Cancer” (including a handy dandy flyer that you can use), with easy facts and talking points that is useful for all of us to educate ourselves and those in our lives, while also grabbing some quick and easy talking points.  Create your own mini-actions by using these facts on your social media, post on twitter or even use apps like PhotoGrid to add text to your own images.

    For our AMAZING MBC Allies:

  • Change the cover photo on your Facebook profile to push forward your support of MBC.  With the #notMeButCouldBe, you can show how easily this can happen to anyone (heck, I was a 29 year old, vegetarian marathon runner!) and that you stand in solidarity.  More images to come, but so many requests, so here is one that we can get up quicklynotmebutcouldbe
  • Make a charitable, tax-deductible contribution to one of these two non-profits dedicated solely to stage IV breast cancer.  You can get a jump on next year’s taxes or give even a small this year’s portion of your return to help change the numbers.

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Over 750 women are projected to die from MBC this week alone.  With increased funding directed specifically to stage IV breast cancer, we can change these numbers.

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I have had many requests over the years asking where is the best place to direct funds to support this cause and my recommendation are:

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Metavivor: 100% of all donations and fundraiser proceeds into MBC-specific research grants.   This is the research focused arm of our movement.  Ran entirely by volunteers, most of who are living with metastatic breast cancer, their push is to increase awareness about the funding discrepancy that shortchanges metastatic research in the cancer world (see our 30% for 30% campaign), and to directly fund the kind of research that is currently lacking.

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Metastatic Breast Cancer Network: is a patient advocacy group dedicated to the unique concerns of the women and men living with metastatic breast cancer.  They are the legislative, lobbying voice for our community and they also put on a number of programs, including a Fall conference for those with MBC.

For those with MBC, I wanted to pass on two practical pieces of info to help lower your financial burden and hopefully make next year’s tax season a bit easier.

  • If you are totally and permanently disabled, you may qualify for a total and permanent disability discharge of your federal student loans by completing an application at Disability Discharge (an Office of the US Department of Education). If you are already on SSDI, this is an easy process as the Federal government has already gone through the rigorous process of deeming you “permanently disabled” and this additional step will immediately suspend current student loan payments and completely discharging them once approved.  This was SO helpful for me, as I had continued to pay my student loans nearly a year into disability, and was strapped paying them while on the financial  limits of SSDI.
    Additionally, when filing your taxes for the discharge, you are not required to pay the taxes if you file IRS Form 982.  It is a little technical and wonky, so if you have any questions,  I am happy to help =)
  • Tax Deductions for Medical Cancer Expenses
    It may not help for last year’s taxes, but you can keep track of your cancer related expenses starting now. Even having an envelope or special place to put all receipts, bill, etc. will be helpful when next April 15th comes around. Apparently there even some cute Pinterest projects that can make this dreaded process, a little more sparkly & fun:

    pint pinterst receipts
    Qualifying expenses include more than just hospital bills and prescription copays. As long as they’re related to your treatment, even expenses for such things as transportation and home improvement can be deducted. Examples include:

    1. Premiums paid for health insurance
    2. Payments for complementary therapy, such as acupuncture
    3. Parking fees incurred while at treatment
    4. A wig purchased because of hair lost during chemotherapy
    5. Mileage for a car driven to and from treatment

Don’t get carried away, though. Not everything that makes you feel better qualifies as a medical expense- unfortunately spa days and mani/pedis aren’t on the list!😉 And remember, eligible deductions aren’t limited to cancer-related medical expenses; you can deduct medical expenses for your spouse, children and other legal dependents (unfortunately Furr Baby care is not included, would have been nice when Fala ate a pair of socks last year!!). That can be important if your cancer-related expenses fall short of the minimum 7.5% level. Throwing in the kids’ emergency room visits and your spouse’s eyeglasses could help you reach the threshold.

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I hope that these few resources, tips and info can help ease your feeling of being “taxed” and can help us all in our own fight, or that of others, with Metastatic Breast Cancer. Fight on friends and thanks to everyone for taking their turn with the baton! #METup

Off to nap! xoxo

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philadelphia story

13 Apr

act

The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do much of anything only three short days after chemo, let alone fly across the country.  But away I went. Networking with these women, gathering information and just sitting in a room full of women like me- is a connection that is worth any amount of neupogen, face masks and coffee.

And this year was made even more special, as I was invited to be a part of LBBC’s inaugural class of women with MBC for the “Hear My Voice” advocate training. A training that connected me with women across the country, of all ages (ranging from 24-68), and gave more space and voice to African American women with MBC then any other program that I have participated in during my 4 plus years of living with this disease.

Inaugural "Hear My Voice" advcates

Inaugural “Hear My Voice” advcoates

It was magic in that it allowed us to rally, to brainstorm, to tease out the reality of this disease without us needing to make it pretty.  To make it polite.  The training gave us the information, the tools and put it in our hands—I just don’t think they realized how quickly we would move into action. And to be honest, neither did we.

After a grueling day of information and the noticeable absence of women no longer with us, a group of us sat at dinner drained.  A few even unable to eat, as the heaviness of our own journeys collided into the reality of our collective.  It was then that the 108 number came up again.  That 108 of us died today.

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That during the course of our three days at the conference, over 325 were estimated to have died, a number that equaled the number of conference attendees.  I realized, “We died.  Over the course of the past three days of the conference, that death toll estimate wiped out the number of people at the conference”.  The shock, the stomach dropping reality moved us into action.

Many of us have likened this journey to the early years of the AIDS epidemic, the limited prognosis and the number of our peers passing away as they speed through limited treatments.

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With organizational speakers even sharing the parallel through their own presentations and demanding that we push and suggesting that we find a way to “ACT UP”.  ACT UP (AIDS Coalition to Unleash Power) was developed in the midst of the AIDS crisis to bring about legislation, medical research and treatment and policies to ultimately bring an end to the disease by mitigating loss of health and lives. A diverse, non-partisan group of individuals united in anger and committed to direct action to end the AIDS crisis that led a number of actions to demand more.

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I have learned a lot from the AIDS community first hand, as my “pre-cancer career” was spent working with these amazing individuals for over a decade.  I was able to view this level of pushback, advocacy and coordination,  including my own arrest in protest at the White House doing a “die in” to protest abstinence only funding.  A “die in” is similar to a “sit in”, a non-violent form of protest that pushes a bit further to demonstrate the death of the participants.  A striking imagery that screams– WE ARE DYING!

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Perhaps we were not at the White House this past weekend nor had the time to make a perfectly organized protest.  But we did have a large group of women with MBC disease (the largest group that meets annually)- some of which would not make it to the next year. That we at least had the capability to lay down and make a visual mark to symbolize the 108 of us that die each day.

So we rallied the troops overnight, with 3 am posts, emails and drafting.  After alerting our LBBC trainers to our plan, we were supported and logistically helped with planning a “die in” for 108 of  (their staff was AMAZING).  Set to happen midway through our last morning of the conference, we even had the inspirational director of the Metastatic Breast Cancer Network Shirley Mertz join us.  And at 10:45 am Sunday, we laid down together.

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Hand in hand, a eulogy written by the amazing Beth Caldwell, a young mother with MBC, was read aloud:

“Dearly beloved, we are gathered here to say our goodbyes to the 108 Americans who will die of metastatic breast cancer TODAY, and EVERY day, because there is no cure for our disease. They are our friends, our mothers, our daughters, our sisters, and they deserve better. They deserve a cure, and we honor their memory by DEMANDING IT, not someday, but NOW. And now, let’s have a moment of silence for those 108 women and men who are no longer with us.”

Laying head to head, hand in hand,  I heard the sobs of the women around me. The moment of silence echoing the last breaths of so many of us that have gone before. My Keeley. Jolene. Linda. Tobi. Helen. Jaimie. Carla. Jenn. Darcy. Tracey… and so on…and so on. We collapsed into each others arms afterwards.  The endless hugs and tears of what a moving moment to finally show our reality.

Prior to the event however, I was approached by another woman with Mets, forcefully asking that we not do something so drastic.  That this imagery was not something that should be shared with our kids, our families, or others with MBC.  That there were other ways that we could do this.  Other ways that were not so morbid, so ugly, so unnecessary.

Her concerns followed me on to the plane that afternoon.  Aside from the emotions of the “die in” still lingering and my own exhaustion setting in from the weekend, I felt haunted by this woman’s words during the six hour flight back to LA. Did we go too far?  Was it too much?  To dark, too scary? An unnecessary image? Was this not what the MBC community needs ?

That was until my flight touched down and my phone lit up with the news, that another young woman- the second that I knew this week- had died from MBC.  A 34 year old woman, the same age as me.  And I suddenly had my answer- we have NOT gone far enough.

Sephora died at 34, the same age as me.  A Huff Post writer and advocate, she will be missed.

Sephora died at 34, the same age as me. A Huff Post writer and advocate, she will be missed.

Pamela died from Metastatic Breast Cancer... She was 29 years young with 2 small children.

Pamela died from Metastatic Breast Cancer at 29 leaving two small children.

Would I love to happily pose for a “live in” rather than a “die in”? 100%.  But I have tried those tactics, done those walks, shared my blog and I continue to get sicker while  my friends around me continue to die. Harder for our families to see an image of us laying on the ground “pretending to die”, is the fact that we ARE DYING.  That they are actually watching us die. Why have we not rallied harder?  Why have not pushed past the pretty imagery of breast cancer like our leaders in the AIDS epidemic to demand more?   The women that are no longer at the conference each year, the ones missing from my photos, aren’t there because they were cured.  They aren’t there because they died.

I have lost my fertility. My career.  My hair.  My energy.  My hobbies.  A number of women, my friends, to MBC.  The only thing that I have left to lose is my life.  So I am making my demands on cancer and taking back what I can.  Doing what I can to fight like hell for all of us with the time that I have left.

My demands include:

  • Changing the funding directed to Metastatic Breast Cancer.
    Of the $15 billion invested in breast cancer research from 2000-2013, only SEVEN percent was spent on stage IV disease. 100% of deaths from breast cancer are due to stage iv. Funding must reflect this. #stageIVdeservesmore
  • Adequate epidemiology and statistical counting for women living with MBC Currently, the breast cancer data system (SEER) only counts women at the time of INITIAL diagnosis. This means that those rediagnosed with stage IV (like myself, Tracey, and so many others), are never entered into Federal databases. Impossible to receive adequate funding, for inadequate data. #stageIVdeservesmore
  • That as a community we lift our MBC sisters of color and those with limited health care access. The stage of disease at diagnosis is higher in African American women and despite a lower overall incidence, the survival rate for black women diagnosed is 20% lower than white women. #fightingforALLofUs #everyColorofStageIVDeservesMore
  • A coordinated alliance with our sisters with early stage breast cancer. As 30% of them will become us (after my own initial diagnosis of stage 2 disease, I know how very true this is), we need your voices, your push, to carry ours on. Especially as we continue to die from this disease, please carry my voice. #MBCally #notMeButCouldBe

How you can help?

  • Stay tuned in the coming months for more advocacy, more info, more legislative push to make these changes real.
  • Share this post, and others every #MetsMonday. Help us to make the noise that we need to make change.
  • Support those in your life living with this disease. Sometimes we need you to fight for us, as this disease can sometimes knock the fight right out of ya.

scott2I’m not asking us to all lay down in protest, I am simply asking that we no longer just lay down in defeat.  I ask that we no longer lose 108 every day.  I AM asking us to “MET UP“.

like a lion

31 Mar

lion2March definitely came in like a lion…and kept roaring and roaring!  Looking back over the past month-  twelve doctor appointments, three chemo infusions, ten neupogen injections, spinal tap, hospitalization, blood patch and more- Ilamb3 can say that it was tough to find much lamb-like peace and calm.

With ongoing headaches and spontaneous vomiting unrelated to nausea, my oncologist wanted to follow up last month’s brain MRI (all clear- woohoo!) with a spinal tap to rule out cancer metastases to the cerebral spinal fluid (CSF).  Besides the emotional roller coaster of having your docs look for cancer in your spine and brain, it turned out to be quite the physical struggle as well. 11041819_10152864349348208_8234239323855854849_n After a 45 minute attempt from the interventional radiology team during to place the needle correctly (why did I have to be awake during this?!), my dura was puctured leading to a “traumatic lumbar puncture” contaminating my sample with red blood cells and more so, creating a spinal fluid leak that would not heal regardless of properly following the recuperation instructions.

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So what does a spinal headache feel like?  I’ll leave it to Johns Hopkins to scientifically describe it:

“Low CSF Pressure Headache is caused by an internal spinal fluid leak and may range from obvious and disabling to subtle and nagging. The brain normally sits inside a “bag” filled with spinal fluid which extends down from the skull into the spine. The fluid helps to circulate waste products out of the brain and provides cushioning and support. When the pressure of this fluid is too low – typically when there is a small leak somewhere in the meninges – the brain may “sag” downward when the patient is upright, stretching the meninges and nerves lining the brain and causing pain.”

So basically, any time that I sat up…my brain was sagging without enough fluid to properly keep it afloat.  Sagging brain?! Makes you kinda gag just reading it, right?

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gag!

With the spinal headache, fevers reaching 102 and an inflamed, infection beginning at the site of the puncture, the on-call oncologist had Connor escort me directly to the ER.lion  After pumping me with three bags of IV antibiotics and four of fluids, an MRI of my spinal cavity and ultrasound of the area, the docs decided to also call in the anesthesia team to perform a blood patch.  March sure seemed to be roaring at this point!

Ahhhh, the blood patch. Another crazy procedure that makes you wonder …why didn’t they put me under for this?!  The Mayo Clinic gives the sciencey discription as, “an injection at the spinal tap site of a small quantity of autologous blood. The introduction of this blood acts to patch the hole in the dura (the outer membrane of the spinal cord) that was created by the needle at the time of myelography.”

Connor recorded  the “Jennie Grimes description” of the procedure, describing why I ended up passing out halfway through!

Twenty minutes after the blood patch, I was ready to rock-and-roll!  Maybe not at 100%, but compared to how I felt with a saggy brain, I was feeling goooooooooooood!  You know it is a bad headache when you are a-okay with someone sticking another needle in to your spine, to inject some of your own blood into it.  Now THAT is a bad headache.  And so very LA of me…to have a “brain lift”!  ;)

In the midst of all of this medical craziness though, somewhere between the spinal tap and being admitted for the blood patch, a sweet moment of calm, perfection, love and goodness did arrive.

Audrey Lind Wood

Audrey Lind Wood

My dear friend Wendy became a first time momma, and granted me the honor of not only being the godmother but also handing down my middle name to sweet baby Audrey Lind Wood.

I can not explain how full my heart was to finally meet this sweet babe (although I am sure that all of you with kiddos know that heart-exploding-out-of-your-chest-with-love-feeling) and what a gift it has already been to have been asked to be a part of her journey.

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In a sense, knowing that I have a million moments and memories that I want to create with this sweet baby and my best friend gives me a new sense of the future and a new-found meaning and gumption to make sure that I am here for it.  Plus, if this gig really does come with a magic wand and an endless supply of fairy dust then Wendy definitely picked the right woman for the job! bippity11043088_10152853176873208_5604593776164048581_n

Also happy to report that all of the medical hub bub was worth the headache – my spinal fluid was cancer free!  I am still on my weekly chemo Navelbine which seems to be holding the cancer at bay, and we will rescan at the end of next month to make sure that there hasn’t been any progression in other areas.  So yay for clearing this hurdle with good news! 10892001_10152895934993208_8583054714130433292_n

Annnnnnnd, with a reduction in dose due to toxicity, coupled with the short therapeutic dosing of Navelbine, my hair is coming in!

I have a mini-poof, barely enough to pull off a headband (more accessory, then necessary) and even had to shave my legs the other day…not sure how happy I am about that last one though!  Still keeping my wigs and scarf on hand, since you never know how the next scan and subsequent chemo will play out.

hair!

hair!

Even with good results, a bit of fuzz and adjusting to this chemo, life with stage 4 is never-ending. I go to bed each night covered in pain patches, nausea patch and diapers (pulling up my big girl pants literally!).  There is no end to my treatment, and once this one stops proving effective, we will make a change to the next and then the next and the next.  Leap frogging through life.  This is what life is like with metastatic breast cancer. Hard, but hope is there.  I find hope in thinking of Xeloda, Affinitor, and now Palbociclib.  All drugs that have been approved even in the last four years since I was diagnosed stage iv with the constant hope of more for me and my fellow metsters.

A lil' cancer thug life

A lil’ cancer thug life

We may still have to be in some type of treatment, but with the help of organizations like Metavivor, more research and funding can be directed to Metastatic Breast Cancer.  I find hope in the research.  Hope in the advocacy.  And I hope that by telling my story to you, that you may learn more about life with stage 4 breast cancer.  Or that my story, reminds another living with mets that there is hope, there is beauty and even in the darkest of hospital stays…there is still laughter and green Jell-O. =)

Green Jell-O for St. Patty's Day!

Green Jell-O for St. Patty’s Day!

You are not alone.  We are not alone.

Chemo buddies!  #sheisTWELVEyearswithMBC #inspiring #dontStopBelieving

Chemo buddies!
 #sheisTWELVEyearswithMBC #inspiring #dontStopBelieving

March was definitely a month of reaching for my Jennie Grrrrrrrrrrr!  As always, life continues to reveal itself between both swings of the pendulum.  The grace and beauty and life, in the midst of hardship and pain and illness.  The perfect juxtapostion between the lion and the lamb.  In like a lion, out like a lamb…ready to see what April will hold.  Grrrrrrrrr!!

Even if there are April showers, DANCE PARTY!

For even if there are April showers… DANCE PARTY!

the emperor

30 Mar

Print

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Between “Downton Abbey” and now, this three-part “canc-umentary” based on the book “Cancer: The Emperor of All Maladies” the Grimigans’s DVR is stocked by PBS! Who knew geek could be so chic! =)

I confess that at times I turn on the TV as a distraction, as a way to stop thinking about cancer- especially 10502527_10152782500893208_1362420128260687161_non chemo days- but this one may be worth the tears.  For this story tells of both the breathtaking progress and the crushing realism of cancer, the hope and the loss.  That cancer isn’t a steady, inevitable climb toward a cure, but as director Barak Goodman describes “one of zigzags and failures and intuition and guesswork and luck. There is this temptation to see these ups 10407521_10152883410343208_5005443676491083455_nand downs as a zero-sum game, but every time we fail, we get closer and we learn from it”.

A lesson that cancer continues to teach us all, 10931231_10152747440503208_5184888718371746847_nregardless of time, history or role as patient, doctor, researcher, loved one. That the journey with cancer isn’t a win or lose but rather one that zigzags into the heart of who we really are, stripping us from our external beauty, mundane worries and cares.  Perhaps as cancer treatment is redeveloped into something even more valuable at each turn, so does the patient, as they delve into the heart of their deepest places and come out more evolved than ever before.

Please watch PBS tonight and let me know what ya think.❤

P.S.- Nice to be blogging again.

P.S.S. – Even if I do kinda sound like an ad for public television. Although, if they threw in one of those Viking River Cruises, I just might be! lol)

viking

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“emperor of kicking cancer’s arse” =D

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