I was watching a breast cancer survivor video the other day, one of those videos that makes breast cancer sound like a positive experience, something that forms you into a better person. And I thought about the videos I'd seen of women with metastatic breast cancer, how those videos have such a different tone. The woman in those videos often looks resigned, far from triumphant, and is often portrayed as just getting by, eeking out what little existence she can, until she finally dies.
Breast cancer survivors are typically portrayed as warriors, as women who have won, and can now go on with the rest of their lives. Articles are written for these women about how to date after surgery, how to conceive children after chemo, how to reintegrate into the work world. Articles written for the metastatic breast cancer audience, in contrast, primarily speak to pain management, disability, approaches in organizing your affairs in preparation for leaving this world. Conferences for the metastatic breast cancer crowd often even have an end-of-life track.
All I have to say is I am sick to death (pun intended) of the end-of-life approach to metastatic breast cancer people.
I fully realize the odds are good that metastatic breast cancer will take me out of this world earlier then I had anticipated. Recently, on the news, the broadcasters were chatting about a website which allows you to upload a photo, and based on the wrinkles and structure of your face, creates an image of what you would look like at a much older age. Based on that photo, the software also guesses how long you will live. At first I was tempted to upload a photo to see what I would look like as an older woman. But then I thought, why not upload a photo to find out how long I would have lived if not diagnosed with stage 4 breast cancer.
These are the odd sort of games we terminally ill play with ourselves. Uploading a photo and seeing how long I would have lived likely would have only pissed me off. I know, based on my family history, I was likely to be kicking far into my 80s or even my 90s. My family has good genes. So how I ended up here, I do not know. Cancer simply does not run in my family.
So back to the video. Yes, I know all about that death stuff. I know how capricious cancer is. I know I am a walking time bomb of "so when will she decline and die?" But that does not mean I sit around considering my decrepit future, obsessing about not-yet pain, or constantly planning my end of life.
Instead, I focus on living.
The truth is that 30 percent of women diagnosed with early stage breast cancer will eventually go on to become stage 4. This may happen within one year of the initial diagnosis, or it may happen twenty years after the initial diagnosis. With breast cancer there is no safe zone. It can come back at any time. In my case, in spite of having regular mammograms, I was immediately diagnosed with Stage 4 breast cancer. I became an instant member of an elite group, the 30%. Lucky me. Or unlucky me.
The trend in support resources for breast cancer shine the brightest light on the earlier stages of breast cancer, treating these patients as the lucky ones, the ones who will move on with life, the ones who have won. And in the same way, the research dollars in breast cancer are mostly focused on this earlier stage crowd. Even though 30 percent of all breast cancer patients will eventually become metastatic, only 2 percent of research dollars go to research for metastatic breast cancer. With breast cancer, prevention is simply not the key. Metastatic breast cancer can strike an already treated woman or man at any point. Because of this fact, prevention of metastasis and cure are the true keys.
In spite of being part of an unlucky club, myself and all my metastatic sisters and brothers continue to live our lives, with just a few adjustments We dance, twirl, hug, love, date, garden, hold babies, and many of us even work. You may not realize that you know someone who is in the 30 percent, we often look healthy and vibrant. But we are all around you. And with advances in cancer treatment, we are thankfully living longer. We are the 30 percent. And we are still alive.
Women and men with stage 4 breast cancer most often do not lay down in resignation and hopelessness. At first it is devastating news, but with time and treatment, most of us learn how to live life in spite of the side effects, the treatments, the setbacks. So maybe it's time the breast cancer world treats the 30 percent with the same respect as the earlier-stage gang. Make a video of one of the 30 percent, showing her in a bright, life-is-to-be lived light. Bring in the glamour makeup artist, blow out that beautiful hair, wig or scarf. Hand that woman a baby. Film her walking in a field of daffodils. Talk about how, in spite of such horrible luck, she is still determined to live her life, love her people, take fabulous vacations, walk the dogs and stroll the babies along the sunny park paths.
I am tired of all this talk of end of life, tired of being overlooked by research and support dollars. As long as my feet can move it along this happy road of destiny, I'm gonna hop and skip my way. And, don't you worry. If you even try to utter the words "end of life" to me or try to deny me my research dollars, those feet will walk right over to you, and I will thwack you in the head. And then I will go back to the business of living.
If you would like to support research in metastatic breast cancer, please donate to www.metavivor.org. 100 Percent of dollars donated to METAvivor fund life-saving research.
My first flirtation with breast cancer was in 2000. A routine self-examination found the lump in my left breast. 10 days before a long anticipated trip to the UK. I called the doctor to make an appointment - after the trip. My reasoning? If it is nothing, then Yay! If is cancer, I will have such wonderful memories to help me through.
Yes, the trip was wonderful. Reunion with college friends, trips to places I'd never been and revisiting some of my favorite spots in England and Scotland.
Long story, short, yes, cancer, Type 2, lumpectomy, followed by lymph node surgery. Then chemo, radiation etc. Side effect 1:4 of adriamycin heart damage. I preemptively shaved my head which cheered me up tremendously. Major chemo brain - I recommend the Cartoon Network. My firm allowed me almost a year off - amazing but true, and I returned for another 5 years of full time, but 4 days a week.
3 years on Tamoxifin and 4 on Femara.
My oncologist said, 'Well, you have an 87% chance of complete recovery! I guess that was before the 30% figure came out.
Late in the summer I began to have an itchy neck. I thought it was something to do with 'farmer's tan' because I'm a gardener. Then some bumps I though were bites, never thinking they were unhappy lymph nodes. The final straw was lymphodema of the left arm. I had a standing oncologist appointment and also a primary care visit the same day, 5 hours apart. Oncologist: this isn't good. Blood test. I was freaked so much that I walked over to the PC doctor and sat in in office, apologizing for being grossly early. He saw me, heard out the symptoms, itchy, bumps, etc. His comment, "this isn't a happy bump" PET Scan, and a few other tests confirmed that the breast cancer had moved supra-clavical with more lymph nodes involved.
Once again I had a trip to the UK planned. Nov 11th to Dec 16th. The tests results didn't come back until a week before I was supposed to leave. Fortunately I had booked only 1 hotel with a no refund policy, and the airline, Virgin, has a terrific policy, so, again, I said to the doctors, I am going away on Thanksgiving (who flies out on Thanksgiving??) on a 6AM flight? I had a wonderful wonderful time catching up with my loved ones. I am so fortunate to have developed lasting friendships over there.
Back the 16th, protocol treatment set up on the 17th, treatment (I had to wait 10 days because I am on Coumadin (see adriamycin side effects)-- radiation 28 days, one day to install the port, then chemo once a week for 3 weeks during the radiation. As of today I have finished the second of the third round. One more round to go they think, then we will switch to another set of drugs.
Again, shaved the head. You can't control a lot of this, but I found it so empowering the first time, did it again. Uh, guess what - it isn't falling out and now it is a pain to shave. Still, this gives me a chance to explore make up!
I have a goal set for July. I am attending a course given at the U. of Mass on Mindfulness and Stress Reduction. I attended my first one in January 2014 and it changed my life. I knew zero about meditation or yoga. Nada, nothing. Blank slate. Now I meditate at least once a day, sometimes greatly helpful, sometimes hard to smooth out my inner tubulence.
Sorry to go on like this, possibly the steroids are giving me motor mouth, but it is nice to find a place for people like us.
Kudos to all the Strong Women & Men Warriors. I am proud to be amongst you.