Pinktober Guest Post: Jen

Pink-to-ber A portmanteau coinage used by many people who live with breast cancer to refer to October, the Breast Cancer Awareness Month, which is heavily dominated by marketing in the color pink and cute tags like “Save the tatas”. (See Komen, etc.)

During the month of October 2013, I am running guest posts from people with metastatic breast cancer (MBC) or who are closely involved with someone who has MBC. This was the idea of the wonderful Jody Schoger, and I think some other breast cancer bloggers are participating, too.

Jen wrote today’s post. Her story is very special because she is one of the very view metsers that have gone into remission. Jen was diagnosed in 2008 at 41 years old with Stage IV breast cancer (liver and bone mets),  Her2 and ER positive.  She is a single mom with two daughters. Fortunately, Jen had a complete response to chemotherapy and has had no evidence of disease (NED) for over five years.  She’ll be on Herceptin for the rest of her life. Let’s turn it over to Jen now; please give her lots of comment love!

. . .

Oh the funny looks I get when people ask if I am doing the Komen Race for the Cure and I politely say I do not support Komen.   WHAT??  You have breast cancer?  WHY?

Well, I guess I wish they would change their name.   Komen is not for the cure.   The cure is not a hideous pink awareness campaign.  The cure is not about pom poms and awareness.   The cure is completely about research.   Komen gives less than 18 percent toward research and only 3 percent towards metastatic breast cancer research.  For clarification, early stage cancer does not kill.   Metastatic breast cancer  is what kills.

Thirty percent of early stage breast cancer will eventually turn metastatic.   And 97 percent of metastatic breast cancer patients die.   With all this awareness, it is amazing how many women are totally misled.    After 8, 10 or 15 years, the cancer has returned and they are dumbfounded because they were told they were 98 percent cured. That 98 percent was a five year survival rate which is touted constantly.  Seriously, these poor women are in shock that they are now metastatic. How often does the awareness campaign cite these statistics????

What can I tell you about being a metastatic breast cancer patient?   I was diagnosed at the age of 41 with Stage IV right from the start.   I found my own lump and the mammogram could not pick it up even though it could be felt.  Neither did the ultrasound.  When finally diagnosed six months later, I had Stage IV cancer spreading to my lymph nodes, liver and bones.     I am a single mother of two daughters.   I work full time and have had to continue working  full time as I am the sole source of income and insurance.

Since May 2008, I have had treatments every three weeks  and that is over 100 treatments so far.  The thing about metastatic cancer is that I will never be done with treatments as long as I am alive.   They may change as treatment fails but I will always be on treatment.  I am lucky as my treatment, for now, has only a few side effects and I can manage fairly well.   For the first six months, I was not well at all and many others live years struggling like this.    What people do not realize is that by February every year, I max out my out of pocket expenses and immediately have $2500-$3000 uncovered expenses.   Not to mention the co pays with doctor’s appointments and prescriptions.   Also, I have to take off work one afternoon every three weeks.      Finally there is the dark cloud over my head saying, “you have a terminal disease”.    Ninety-seven percent will die from this disease.

So when you look at me and see that I look pretty healthy and normal, you should look a little deeper and see that I am afraid, financially burdened, tired, and angry.   I am angry that pink brain washing, especially in October, has taken center stage and presented a pink happy image that we are really making strides against cancer.   I am angry that so many people make money off our struggles and pawn it off as supporting breast cancer awareness.  I am angry that if Komen was keeping their original mission, the money would be going into research that finds a cure.  I am angry that all this attention and enthusiasm couldn’t be rallied in to research that makes a difference.   I am angry that I know so many wonderful women and many very young women and young mothers who are suffering and dying.   I am angry that no awareness is drawn to the death rate and that this has continued to happen at the same rate as it did back in the 80’s when Komen was started.

October is a very difficult month for those with Metastatic Breast Cancer as we are the ones who feel failed.  Where is our hope?

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14 Responses

  1. Jen, I am very moved by your story as well as your call to action. Very best to you.

  2. Paula Sanders says:

    I am so glad that you have put in to words the way I am feeling. I do not have metastatic breast cancer . . . Yet. I have several friends who did and one now who does. I agree that more of the money needs to go towards research. Thank you for writing this!!

  3. Maxine D says:

    I cannot say that NZ has a better funds to research ratio than the USA, as I have never followed through on it, but pink-tober is in evidence here. Being a smaller country I would hope that the funds raised would have a higher % going to research than Komen, The Breast Cancer Foundation is the ‘main player’ here, but I guess any situation is prone to being ambushed by it’s own success in advertising.:-(.
    I can understand Jen’s anger, and I ‘do my bit’ when speaking about breast cancer and the perceived ‘cure’ rates that are touted.
    Prayers and blessings

  4. Barb says:

    Jen – the facts and reality about bc and mbc cannot be repeated too many times. How wonderful to read that you are currently NED! I hope he continues to take up residence with you for a long time to come.
    It is for you, and for me and for the thousands of women and men living with mbc that I am holding a fundraiser this month. The main objective is to bring more awareness and education about mbc.
    We all need to continue to get noisy about the realities of mbc and squash the message that bc is pink and pretty.

  5. Susan Rustad says:

    Jen–Your comment was great, right to the point and stick it to ’em. I’m going into my fifth year and have felt really good, except for chemo fatigue. Now I have skull mets and almost constant headaches. Now I know what it feels like when it begins to recur. Crappy, but I should continue to be Ms. sunshine for my family. Thank goodness I have friends to talk to.

  6. Shari Larsen says:

    Jen, I agree with you on all points. I started out with stage II in 2003, and was diagnosed with bone mets in 2007. After different oral drugs failed, I started chemo again in April 2010. I hear “but you look so good” a lot; one reason is probably because so far, I haven’t lost all my hair to the chemo like I did 10 years ago. But the chronic pain and fatigue I deal with don’t show from the outside. Those that see me out shopping for groceries or running errands don’t realize the effort it takes sometimes to get myself dressed and presentable looking for the public, or see the dark circles under my eyes that I have hidden with concealer.

    • Jeanne says:

      I feel exactly the same as you! People say you look great! But the effort to get dressed and out is huge! Thanks for posting!

  7. Thanks for a very to-the-point post. The neglect of MBC is a Komen and national shame. I do not have mets (yet), but I feel incensed by October. I never was a rah-rah girl and I certainly am not now.

  8. From one liver metster to another – I hear you. I am on the anti-pink bandwagon too, and I wish you many years of feeling okay. My wish when I was diagnosed was to see my son graduate high school, and I have 8 months to go. Good luck to you.

  9. dear Jen, thank you for sharing your story, and for telling the facts about MBC that need to be told, and understood. I presented with ST IV mets at the very first get-go, but until I began tip-toeing around the blogosphere I had no idea of what that would ultimately mean. I truly thought that being deemed NED after nearly 10 months of treatment meant I was safe. it is only now, as a new widow after having lost my husband who also had cancer, multiple myeloma, and died suddenly while we were both in remission, that I understand the full implications of this horrible disease. thought I am still NED, 2 months after my husband’s death, I was dx’d with metastatic uterine cancer, stage III and will undergo another hellish course of treatment.
    most people don’t understand that life must go on, that other tragedies – financial, emotional, physical, and yes, other kinds of cancer can, play havoc with our lives. we need to be “aware” that there is nothing in life that can be called, “unimaginable”, and pink ribbons will never accomplish filling the needs of the suffering; only raising our voices and screaming from the highest mountain tops to abolish such mundane and worn-out gestures will we ever be able to focus our efforts to demand the money needed for research to learn what causes METS, and how it can be wiped from the face of this earth. your story is very moving, and I hope that dear NED stays with you for a very long time.

    much love and light, xoxo

    Karen, TC

    • You are so right, Karen. We tend to think that just because we have survived one tragedy, loss, illness, that no God in His right mind would visit upon us another. Sadly, just because we have cancer or have suffered a loss, we are not immune.

      Actually, I do not believe God causes tragedy or illness or suffering. I think they are part of our human condition.

      But my heart goes out to you and my love wraps my arms around you.

  10. Jennifer Bockey says:

    Thanks Ladies for all your replies. Indeed we all fight different battles with this disease. While we all have breast cancer, our individual stories differ. Some of us fight alone and some have great supportive spouses/partners. Some of us are also caretakers for loved ones (spouses, children, parents, etc) with cancer or other diseases. Trying to find that balance and not let this disease take over our whole life is really hard especially for those who physically feel horrible. I hate that I have seen so many ladies lose their battle and it really bothers me when I see the October pink parades of hope and courage. Of course, I do celebrate everyone who made it through treatment and sincerely pray the earlier stage women and men never have to relive it. But all the pink whoopla seems to forget about the metastatic patients who will never be done with treatment and who live life scan to scan. October can be a very stressful month for the metastatic community. I feel though that we are starting to be heard. I saw that Komen joined the metastatic alliance and even put out on their f/b page the stats we have been talking about. It really enraged some of the early stage ladies and they stated this is NOT what they wanted to hear. Of course it is not.. but they need to know. Enough pretending they are cured. Some indeed are but cancer doesn’t seem to discriminate and still too many of them will experience their battle again. And THAT is where the focus absolutely needs to be!!! Every single breast cancer patient should be demanding a cure.

  11. Judy says:

    I must add my voice to all of yours, although my story is still ongoing.

    In Oct 2010 my husband was DC with an aggressive stage of prostate cancer. Surgery, then more surgery to implant markers in his pelvis so radiation could be done to the correct area, then 30 days of radiation. Since it is a pelvic cancer, every day of radiation included having a tube put in his rectum and then the radiation came. Next day, another tube, more radiation, and over and over again. Keeping track of his PSA tests and crossing our fingers they stay low. Bill for radiation ALONE was half a million dollars – thank God for insurance.

    Early 2011 our only child joined what we consider to be a cult and refuses to contact us since our religion is not the same as his. He told us “I don’t know how to deal with Dad’s cancer so I’m going to ignore it”. Along with his loss of contact, we also lost contact with our 3 grandkids.

    In 2011, my husband had a triple A repaired in his abdomen. Cut open, stents put in the heart, the insides pulled outside of the body while this was done and then re-inserted. To this day, it hasn’t come back. Thank you Lord.

    Oct 2012 I was DC’d with Stage 1 breast cancer. Surgery to remove it – Oops, it’s Stage 2.. 4 nodules removed, still have the breast. Started chemo. 1 week after first chemo, I had to call the paramedics to go to hospital – BP 80/50. Doc admitted me and two days later he told me that if I hadn’t called the EMT’s when I did, I’d be dead, NOT GOOD. Two weeks in hospital for this, got home on Christmas Eve. Chemo restarted and continued for months. After chemo finished, radiation started. Also have fibromyalgia so holding my arm above my head even for the shortest radiation was VERY painful. Stopped radiation and started PT to make arm better. Re-started radiation, got radiation burn. Stopped radiation to let heal and then finished up with radiation. All ACTIVE treatment is over, but , oh, the routine tests and office visits. Not to mention the medicines and their side effects.

    As I’m sure you all know, I’m “hanging in there” and taking it day-by-day. Now I’m going back up to the infusion lab but this time with my 94 year old mother where she gets blood transfusions and iron treatments. I think my car could go automatically to the infusion center!!

    Trying to stay positive!

    have a happy day 🙂

  1. 13 October, 2013

    […] What’s the big deal with pink? on the Searching For EMWA blog; Jen’s guest post on Telling Knots; the folly of the Doritos breast cancer campaign on A Time For Such A Word , and two great posts by […]

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