本帖最后由 橙色雨丝 于 2016-12-20 12:01 编辑
这是一位名叫Michele的美国病友的告别博客。2007年，她被确诊为非霍奇金淋巴瘤。在六个疗程的化疗后，她的医生告诉她治愈的可能性是80%。但是她不幸复发了，这时她开始用博客记录自己的治疗历程并准备自体干细胞移植。在后来的四年中，她多次复发，每一次复发都意味着生存概率的降低。当她准备用兄弟Johnny的干细胞做第二次移植，也就是异体移植的时候，她了解到有20%的可能性连移植过程本身都熬不过去。移植后几个月，她再次复发了，这时医生告诉她生存的希望只剩下个位数，“几乎是零”。虽然她也知道路可能已经走到尽头，但她从来没有失去信心，她的动力和对生存的强烈渴望来自家庭的有力支持。最近，她做的PET CT显示仍然处于完全缓解，这已经是第五个年头了，她成功的跨过了一个无形的里程碑。她碰巧遇到了做第二次移植时的一位护士，那位护士的面部表情是：“你居然还活着！”是的，我还在这里！在她最后一次更新自己的博客时，她说：“很多的癌症博客是以葬礼安排结束的，都是由亲属告知大家这场战斗终于失败了。但我的博客不是。我的博客以胜利作为结尾！”最后，她总结了十条经验，第一条就是：希望永远存在......（博客很长，就不全文翻译了，供英文较好的病友阅读）
GOODBYE BLOG. I’m leaving cancer behind.
Many cancer blogs end with funeral arrangements. They are often written by a spouse or parent or loved one to inform followers the battle has been lost. Not this one. Michele’s NHL Blog (that’s non-Hodgkin’s Lymphoma, not National Hockey League) is going out on a high note with a Stanley Cup-like win. Last month I reached a significant and highly improbable milestone. I had a clean PET/CT scan marking five years in remission from non-Hodgkin’s lymphoma. When I was diagnosed in 2007, my doctor assured me I had an 80 percent chance of a cure after a mere six rounds of chemotherapy. I started this blog after I failed that treatment and began to prep for an autologous stem cell transplant using my own stem cells. During my four-year battle with blood cancer, my odds of survival declined with each relapse. As I infused high-dose chemotherapy in preparation for a second transplant, an allogeneic stem cell transplant with my brother Johnny as my donor, I learned there was a 20 percent chance I wouldn’t survive the procedure itself. A few months later, after yet another relapse, my odds of survival were in the single digits. “Almost zero” my doctor told me recently. I’m not sure I ever believed I wouldn’t make it. I imagine I must have come close to the edge a few times, but had things gone differently it would have been complete denial right up until the end. I think the reality of beating those terrible odds hit me when I ran into a nurse that took care of me during my second transplant. The instant look of surprise and elation on her face was enough to tell me what she was thinking... “I can’t believe you’re still alive!” That’s right girlfriend. I’m still here. My motivation to survive can be traced directly to my family. My three beautiful children – Ellie, Leah and Nate did not lose their mom at a young age. The memory of me has not begun to fade and I’ve been able to watch them grow to become extraordinary teenagers. My husband Mark held our lives together by being my rock and shielding the kids from the darkest moments of my fight. His presence gave me peace of mind to know everything was taken care of and I could focus on doing what I had to do – Beating cancer. Staying alive. I owe a lot to my family, friends and neighbors. The gratitude I feel for the outpouring of love, meals, cards, rides to the hospital and endless support for my kids can never be properly expressed. Some even did my laundry and others donated blood when I needed transfusions. Thanks guys. Because I am one of a small handful of “long term” survivors after an “allo” transplant relapse, my doctors in Pittsburgh may be working with my doctor at the National Cancer Institute to write up a single patient case study. One day you may see Patient X on the pages of the New England Journal of Medicine. People ask me all the time if cancer changed me in some way.I know I’m exactly the same person I was in 2007 but with a new perspective on life. I still wonder why I got cancer and when I see friends and family members diagnosed I wonder the same thing. What can explain the huge spike in cancer and other diseases and disorders? A few months ago, President Obama announced the Moonshot Cancer Initiative that will expand America’s efforts to cure cancer. Through my role on the Leukemia and Lymphoma Society policy team, we provided 13,000 letters that led Congress to approve $2 billion in funding for the National Institutes of Health – with $264 million dedicated to the National Cancer Institute. This bipartisan legislation demonstrates a new day for the war on cancer and I’m proud to be a part of it. As important as it is to find a cure for cancer I believe preventing cancer is just as important. You don’t hear much about that fight. About how important it is to remove the tens of thousands of chemicals we are exposed to every day from our environment. Lead in our water, pesticides in our food, chemicals in just about everything. And don’t even get me started on Fracking and fossil fuels. I guess I’ll have to save that for another blog… As I sign off this blog for the last time, I want to share a few things I’ve learned on my personal journey with the hope my experience may help someone else. Thanks for following my story – I wish you all peace, love, health and happiness. See you around, Michele 10 THINGS I LEARNED WHILE BEATING CANCER 10. Don’t panic. When cancer comes knocking and whisks you off your feet, you may be inclined to jump right into treatment immediately. It’s normal to come out swinging, but by taking a moment to research and better understand your diagnosis you can create a game plan. Don’t start treatment without exploring the many options available – including clinical trials that may be available from the start. 9. Find an advocate. Fighting cancer is like a full-time job running a major corporation. It’s tough to do it alone, especially when you’re deep into treatment and feeling lousy. Some people choose to be their own advocate, but it’s important to have a back up plan. Make sure you have someone willing to fight the fight on your behalf. 8. Get a Second…or third…or fourth opinion. This is your life and every decision matters. When the answer is not clear-cut or you are presented with options, you can get a fresh perspective from another hospital or treatment facility. Don’t be afraid to hurt your doctor’s feelings. Don’t be afraid to question and challenge your doctor – you may find there are alternatives that may not be offered where you are getting your treatment. You may need to travel or set up phone consultations – but the extra effort is worth it and just might save your life. 7. Find an outlet. Talk to other cancer patients. Start a blog (ha!). Find a local support group or an online discussion forum to get different perspectives on treatment and recovery (an online lymphoma forum connected me with the doctor that eventually saved my life). Consider taking up yoga, painting or meditation, or try something new to take your mind off cancer and blow off steam. 6. Yes, some alternative therapies work. Your friends mean well when they offer asparagus juice, lemons, hypnosis, and detox diets to fight cancer. But the fact is, alternative therapy/complementary medicine and integrative health are growing in recognition. I’ve used acupuncture, nutrition, massage, Ayurvedic medicine, essential oils, aromatherapy, and chiropractic care. When I developed a cough that lasted over six months, a high dose of Chinese herbs got rid of it in less than 2 weeks. Don’t knock it. 5. Live clean. When you fight cancer with chemotherapy, where does the cancer go? Actually you pee it out, so make sure you drink a lot of filtered, purified water to flush out those cells. Make the transition to natural products for things like shampoo, lotion, beauty products, deodorant, laundry detergent, dishwasher soap, air fresheners, etc. Many of the toxins in these products can build up in our bodies and turn into cancer. Pay attention to the amount of plastic you use. Get rid of plastic cups and plates, don’t heat or freeze plastic and for goodness sake don’t put anything plastic in your microwave (or better yet, get rid of your microwave). Lastly, buy organic, local and non-GMO food as often as possible. 4. Trust your instincts. If you sense something is wrong, that usually means something is wrong. If you have a feeling about the treatment, side effects or even about your doctor, you should consider your alternatives and act on them. Whether it’s calling 911, making a trip to the emergency room, getting a second (or third or fourth) opinion, or finding a new treatment strategy – your instincts are usually correct. 3. Embrace Your Badges of Honor. Losing your hair and accumulating scars, both physical and emotional, are often part of the cancer journey. I saw many people crushed by these milestones but I tried hard to make the best of them. I gathered my kids around me when I shaved my head, making it a fun (and funny) experience for them. As hard as it may be it’s important to try and gather strength from these terrible experiences. 2. We are Warriors. No matter what happens, you are a cancer warrior. You are a fighter with remarkable strength and you are fighting to defeat an enemy more sinister than anything in the world. Cancer cells are like terrorists. You must carefully and strategically prepare for battle. And remember, you have an army of support behind you and rooting for you. 1. There is always Hope… Even when you are presented with horrible odds, there is always a new drug, a clinical trial, an immunotherapy or other revolutionary cancer treatment right around the corner that may work for your disease. Even though there was a less than one percent chance I would survive I never gave up. I found that new drug and fought for it. I never lost hope. And neither should you. | 
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