在我30岁生日的一周中，我醒来时，我的左乳房感到压力。我以为我已经翻到手机上了，但是那里没有电话。我感到的压力是我用手能感觉到的坚硬肿块。同一天，我去了当地的护士从业人员。一周之内，我被诊断出患有乳腺癌，特别是浸润性导管癌.
两个星期后，我去了另一个肿瘤学家第二意见。在约会过程中，我提到我也经历了back pain. In short order, a CT (computerized tomography) scan revealed that the cancer had metastasized, or spread, and gone to my spine. That fact meant that my cancer was now classified as转移性乳腺癌(MBC), also known as stage 4 cancer.
乳腺癌的分期系统从0到4，阶段0表示早期病例，没有扩散，第4阶段意味着该疾病中最先进的阶段，在该疾病中扩散到人体的其他部位。虽然MBC是可以治疗的，但无法治愈。一旦您被认为拥有MBC，您将在余生中接受治疗，这种疾病可能会缩短生活。只有大约2％的MBC患者将过着正常的寿命。在头五年中，超过75％的死亡。
Beyond Pink Ribbons and Ringing Bells
There are currently estimated to be over 155,000 Americans, like me, living with metastatic breast cancer [根据转移性乳腺癌网络]。我们的诊断不符合传统的乳腺癌叙事。我们没有统计到治疗的尽头，等待着我们无癌的一天，并可以继续生活。完成治疗后，我们不会敲响铃铛。我们不是凯旋“击败癌症”概况的主题。传统上，我们的故事与支撑步行和粉红色的丝带无关。
The battle language so commonly used in the context of cancer, such as “beat,” “win,” “loss,” and “conquer,” also doesn’t fit our journey, and, in fact, is very often frowned upon among many patients with MBC. Words like “conquer” imply that we have control over whether or not our treatments will work; this is why saying someone “lost their battle” is like nails on a chalkboard — it makes it sound like someone didn’t do enough to help themselves.
For those of us with MBC, then, the conversation isn’t about “winning the war,” it’s about living with the disease as well as we can. Often, that means our conversations are about palliative care, a form of treatment that addresses the painful symptoms and side effects of cancer. Palliative care isn’t about curing, it’s about improving quality of life. Nor is it only for metastatic patients, like me. It’s meant to handle symptoms from cancer or side effects from treatment at any stage.
姑息治疗是什么样的？
I lucked out. Where I’m treated, at The Ohio State University Comprehensive Cancer Center, palliative care is made a priority for patients (It’s not that way at all hospitals, but it should be). My oncologist established palliative care as part of my regimen from the time of my diagnosis.
姑息治疗可以采取多种形式。对我来说，这是一种解决我癌症，治疗及其副作用的身体和精神菌株的全面方法。
例如，在一次辐射治疗后的几个月，我出现了一种罕见，疼痛的疾病，在整个乳房，肋骨和腋下导致组织和皮肤变硬。花了几个月的测试，biopsiesto figure out what was going on. During that time, I had to put the medication treating my cancer on hold, which allowed my cancer to progress and resulted in not only increased pain, but anxiety about what the future held.
姑息治疗成了我的主要来源for the pain and complications from the radiation. Among the therapies I received were physical therapy, surgery that burned off nerves in my spine, pain medication, anti-nausea medication, message therapy, acupuncture and cupping, and cognitive therapy to help with the mental stress and anxiety.
This comprehensive palliative treatment plan took me from spending days in bed, and having to routinely use a wheelchair and occasional a roller walker, to being able to comfortably live my life and even do some light exercise, including wateraerobics和barre.
姑息治疗：不是
普遍的误解是，姑息治疗是寿命终结或临终关怀的代名词。临终关怀和姑息治疗共享某些目标，例如使患者舒适。但是，临终关怀的重点是在生命的尽头做到这一点，而姑息治疗则着重于赋予像我这样的转移性患者的能力，尽管癌症及其副作用，但现在可以过上最大的生活。
Palliative care has not only allowed me to manage my pain, it has empowered me to make informed decisions about my options and manage my pain and other life-altering effects of cancer. I attend appointments with my palliative team monthly to make sure my needs are being met. My palliative team is also directly tied in to my癌症治疗team and is readily available to assist during times of increased pain or transitions in treatment.
I know that this is a terminal disease that will eventually end my life. Still, I make the choice to live today to the best of my ability.
Over the last year, I’ve started getting involved with advocating for palliative care after seeing too many of my family and friends living with metastatic breast cancer suffering without it. Since then, I, along with my fellow advocates, have taken the issue to the Ohio House of Representatives and Senate to improve access to palliative care as a comprehensive treatment plan. There is no reason for patients to suffer unnecessarily.
