August 22nd, 2016
I was one of those people who assumed because I took care of myself, maintained a good weight, exercised regularly, and had an active lifestyle, that I would never get cancer. I was wrong.
In October of 2014, I became extremely ill--violently ill--for 17 hours after trying a half of a capful of rum (maybe 1/3 of a shot). I didn't think much of it and just decided my gastroparesis was to blame. In November, I lost 24 pounds. Strange...I wondered why. Then I became fatigued in a way I cannot describe. I actually thought maybe I was pregnant and just too old to be so at age 44. I even took several pregnancy tests. All negative.
Then, at Christmas with my family, I was so sick that I only took one picture and threw up my dinner immediately after eating, even though I really wasn't that nauseous at the time. It felt weird. Something was wrong, but I couldn't seem to put my finger on it. I ended up going to the hospital that night. It was Christmas Eve.
At the ER, they seemed pretty confident I had gall stones. Told me I'd have a CT scan and then they'd take care of it. I don't remember the scan, but I do remember the nurse coming in and telling me to get dressed. While sitting in a chair, dressed but IV still in, they gave me an injection without saying a word.
Then the doctor came in. His words were exactly this: "I'm sorry, you're 100% riddled with tumors." They had injected me with Dilaudid to tell me I had cancer. At that time I did not understand that my cancer was terminal. I thought, "He's an ER doctor, not an oncologist". So I was officially diagnosed on Christmas Day morning. I went home after getting no discharge papers, instructions, or referrals from the hospital. I called a local cancer care clinic and made an appointment.
There, I met with a very kind and compassionate man named Winters. He seemed so sad to tell me that I had stage 4 metastatic breast cancer that spread to most every bone I have and that my liver was covered as well. He explained to me that I had about 30 days left to live and that treatment would not likely work at this late stage with all the mets I had.
I was devastated. 30 days??? How could that be possible? I felt pretty awful, but dying? Now? I was 44 years old. I had a husband and two daughters. This could not be happening.
But it was. And it was happening fast. I recall running out of the office, falling badly in some sticker bushes and hurting myself. My husband and I drove home in complete silence. Not from anger, but from shock. After thinking on it for a few days, I called the office back and asked for another appointment. I asked the doctor if I could at least try treatment. He said yes, of course we can try, but the odds aren't very good.
I went home with Tamoxifen. I took it for a month. Still alive. I took it one more month. Still here. The third month, Winters decided it wasn't doing enough for my liver. We needed bigger guns. I asked, "When will I have a mastectomy?"
"Never, as it has already spread," he said. "That ship has sailed."
My next try at meds turned out to be the jackpot. Xeloda, an oral chemo, has been unbelievable. When I first started, my tumor marker numbers were in the 40 and 50,000's: extremely high. After 15 months on Xeloda, my quality of life has totally changed. Just over a year ago, I was in a wheelchair or using a walker. I slept for three and four days straight. I was unable to walk. I had never felt fatigue like that, ever. It should be called something else, it's far worse than what people normally consider fatigued. Now, I'm going places, volunteering, advocating for metastatic breast cancer (MBC), enjoying concerts, fairs, family events, fun with friends! I realize people probably wonder why I'm so content having a terminal disease. MBC is the ONLY breast cancer that kills. Once it spreads to the vital organs, it becomes deadly.
But I have time to make plans, enjoy getting together with friends from school I'd never have seen again otherwise. Sunsets are brighter, flowers are more beautiful, the blue sky and clouds are therapeutic. I have a chance to write letters for the future to my kids. Make videos for them. I know that the median life expectancy for MBC sufferers is 3 years. Three winters, three summers, three falls, three springs, three birthdays. I hope I will be one of the lucky ones who gets more, but there are no guarantees in life-- or death.
I was fortunate my chemo has helped me the way it has. Usually, mets patients only respond to a treatment a few times or not at all, and are always trying new treatment so it's always a challenge. As is as explaining metastatic breast cancer to other folks. I'm always asked, "When will you be done with treatment?"
My answer: When I leave this earth.
Treatment for mets patients never, ever ends. We fight to the end-- literally. And we are the most overlooked and forgotten cancer patients. I get a total of 2% research from Komen Foundation. That can be frustrating. I'm not a survivor, I'm a metavivor. People don't like to hear stories about the dying, just the survivors. We are the elephant in the pink room. I'm working to change that with my advocacy. Our stories are just as inspiring. We live life to the fullest, each and every day, knowing our fate. We press on through countless scans, tests, treatments and pokes. Our fight, it never ends. I have made a promise to my friends with MBC that I will advocate for more research, so this no longer has to be a death sentence to us, or the 30% of people with early stage that will become metastatic. I just want people to be aware, and be proactive and educated in their health care.
So, a metavivor I will be until I am gone. While I'm here, I'm going to give it my all to stay as long as possible and have a great time! Loving and living, that's how I will continue!
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Kristi was diagnosed with metastatic breast cancer that had already spread to most of her bones and covering her liver, on Christmas Day 2014. She was given 30 days to live. She is now thriving and doing well, thanks to her chemo. She will never be in remission, but she will spend each day she is given living life to the fullest!