Survivorship

I had an appointment with my oncologist today. We talked a lot about "survivorship" or life after breast cancer treatment ends. He is writing up a summary of the treatment I received and coordinating follow up with my surgeons and family doctor. For the next year I will see my oncologist every three months for exams and blood work. He said if a recurrence happens 80% of the time it is found by the woman, so we talked about how closely I need to pay attention to how I'm feeling. He said he is not expecting a recurrence, but there is a 25% chance. I am afraid and thankful at the same time. Even though all of the breast tissue is gone sometimes the cancer can come back near the scars. I think that's weird. So, I need to continue to do breast exams, even though I have no breasts. On that note, here is a shout out to all of the ladies out there to check out www.feelyourboobies.com. It is a GREAT campaign! He doesn't feel that I will suffer any long-term toxic effects from the chemo and said my heart should be fine, considering that the amount of Adriamycin I received was safe. He gave me marching orders to get in shape and he was happy to hear that I am serious about the 5k in June. He is fully expecting the blood clot to go away after my port is removed.

Breast Cancer Survivors: Life After the Treatments End
By Gina Shaw MD
The breast cancer treatments are over. Now what? Here's how to return to your "new normal." Life after breast cancer means returning to some familiar things and also making some new choices. The song says "It ain't over 'til it's over," but when you've had breast cancer, you discover that it's not even over when it's over. After a marathon of breast cancer diagnosis and treatment that may last a year or more, you can hardly wait to get back to a normal life again. But the day of your last chemotherapy infusion doesn't mark the end of your journey with breast cancer. Instead, you're about to embark on another leg of the trip. This one is all about adjusting to life as a breast cancer survivor. In many ways, it will be a lot like the life you had before, but in other ways, it will be very different. Call it your "new normal." From your relationships with your family and your spouse to eating habits and exercise, breast cancer will change your life in ways that last well after treatment ends. How do you fight lingering fatigue? What should you do to help prevent a breast cancer recurrence? How do you get back into a normal routine? These are just a few of the questions that may nag at you as you make the transition from breast cancer treatment to breast cancer survival. "Chemobrain" and Other After-Effects: You watched the last dose of chemotherapy dripped from the IV into your veins six months ago. Your hair has really started to grow back. Maybe it's curly where it once was straight, or a lot grayer than before, but it's hair. You have eyebrows again. So why are you still so tired? When are you going to feel like you again? "Your body has just been through an enormous assault, and recovery is a huge thing. You're not going to just bounce back right away," says oncologist Marisa Weiss, MD, founder of Breastcancer.org and the author of Living Beyond Breast Cancer. "You've been hit while you're down so many times: with surgery and anesthesia, perhaps with multiple cycles of chemotherapy, perhaps with radiation."Two of the biggest hurdles women with breast cancer face post-treatment are fatigue resulting from chemotherapy and/or the accumulated effects of other treatments, and a phenomenon some women have dubbed "chemobrain" -- mental changes such as memory deficits and the inability to focus. If you tried, you probably couldn't pick two more frustrating and troubling side effects for women handling busy lives, managing careers, and caring for families."You expect them to go away as soon as treatment ends, and they don't," says Mary McCabe, RN, director of the Cancer Survivorship program at Memorial Sloan-Kettering Cancer Center in New York. That such a program as McCabe's exists is a testament to the changing nature of what it means to have cancer. Women with breast cancer, like other people with a cancer diagnosis, are now surviving for so much longer, and in such large numbers, that some hospitals are opening entire departments devoted to survivorship. How long after breast cancer treatment ends can you expect fatigue, "chemobrain," and other post-treatment side effects to persist? Everyone is different, of course, but as a general rule of thumb, Weiss tells her patients to expect a recovery period about the same time from your first "cancer scare" moment to the date of your last treatment. So if you found a lump or had a suspicious mammogram in April, and had your last radiation treatment in December, it may be August or September of the following year before you reach your "new normal." "Even then, that doesn't mean that you're fully back to yourself again, but by then you should have a sense of where you're going to be, what your energy level will be, and so on," says Weiss. Breast cancer survivorship, Weiss observes, is a marathon, not a sprint. That means learning to handle the symptoms that stick around after treatment ends, says Sloan-Kettering's McCabe, by using those adaptive strategies you learned while on chemotherapy or recovering from surgery. "You need to continue to have planned periods of rest, and think about what times in the day and after what activities you tend to find yourself most tired," she says. A Chance to Make Some Life Choices: Make sure your family and your coworkers understand that just because treatment is over, that doesn't mean that you're going to be able to jump right back into running the carpool, coaching soccer, and traveling to conferences a week out of every month. "Everyone's ready for treatment to be over, not just you, and although they've been supportive, your friends and family may be expecting you to spring back right away," says McCabe. "It's an education process. They need to understand that when the therapy stops, that doesn't mean that the effects of the therapy stop immediately." Manage your expectations, urges Weiss. "Decrease the stress and the pressure on you in whatever ways you can. There are a lot of decisions you can make to take charge of how your life goes while you're in this recovery process." Decide which of those things are really important to you and which ones don't matter quite as much. Let the less-important ones slide or find someone else to do them. Gina Shaw is a medical writer who was treated for breast cancer in 2004, and now calls herself a "joyful breast cancer survivor."

Yahoo! I'm Done!

We went to Salty's at Redondo to celebrate the end of my chemo. This was one of the kids' first "fancy" (a step up from Red Robin) dinners, so it was fun to dress up. My mom gave me a beautiful necklace that belonged to my Gram. I feel close to her when I wear it. It feels so good to be done with chemo. I have five more days of Xeloda and then that is it! Yahoo!!! I am heading to Dallas next weekend for the national Young Survival Coalition conference. This organization is for women diagnosed with breast cancer under the age of 45. There are 15 women from the Seattle chapter attending, so it should be a lot of fun. There are several classes about triple negative, which is the main reason I'm going. I'm looking forward to it.

Last Chemo!

Today was my last chemo infusion!!! Yahoo!!! I am done. I came home, slept for four hours and just got up to make a smoothie. Tomorrow Austin, my mom, the kids and I are going out to a nice dinner to celebrate.

Flesh Wound

I cut myself today and lived to tell about it. I had the bright idea to use a steak knife to even up a big three wick candle. Last time it was lit Nathan played with it (what is it with boys and fire??) and one side "fell" off. As I was trimming it up with a steak knife, the candle slipped out of my hand and just like that my left thumb was sliced and there was blood everywhere. It soaked through three washcloths. Yikes! I got pretty woozy and anxious. I called 911, told them had cut myself and was on Coumadin. The ambulance was here right away. I called Austin and he picked up the kids from school. Once I got to the hospital the bleeding was pretty well under control. They planted me in the waiting room for about a half an hour, so clearly they weren't too worried about it. It took 9 stitches. I'm home now, the local is wearing off just as the pain killers are kicking in. I'll be fine. It's just one more thing.

Three Week Follow-Up

I saw my oncologist this past Monday. We talked a lot about the "new normal" or what life will be like after I'm finished with chemo. Waiting, watching and wondering if it's back while trying not to stress out. After one year without a recurrence I'm considered in remission. After five years I'm considered cured. This was just a regular three week follow up appointment, so there is no real new news. My counts look good and I'm tolerating the chemo well. We'll schedule surgery to take the port out a month after I finish chemo. He gave me the thumbs up to train for the Susan G. Komen 5k Race for the Cure, which is in June. My plan is to RUN it, so I better get my rear in gear. While this is a lofty goal, I believe I can do it if I stick to a training schedule. It's only three miles.

Wonderful Distraction

It's been a week since we brought Tui home. It has been a great week! Everyone is settling in nicely. I would say that we are all definitely bonded with Tui. The kids are doing great with him. Amanda pets him, fills up his food dish and gets kisses on her hand. Nathan is the proud new dog owner. He is very responsible and helpful. Having a dog around is the most wonderful distraction for me. It's hard to think about how sick and tired I feel when I have my family and this new little bundle to focus on first. He goes all out, is full of energy and loves to play - then all of a sudden he will be completely sacked out. He is a lap dog, but likes his bed and also goes into his "house" (crate) with no problem at all. We just have to get up once at night to let him out. He goes in the car with me when I pick the kids up from school. He gets so excited to see Nathan. Yesterday we even took him up to Crystal Mountain for Nathan's ski lesson. I thought, being a Husky and all, that he'd love the snow. I was wrong. He wasn't real fond of the snow, it was too cold. He preferred to be cuddled up inside our coats. The focus of this blog is to keep friends & family up to date on my cancer journey, but I think it's important to share the good things that are going on my life too. Tui is definitely a good thing! So, thanks for listening to me rave about him. Chemo went well last week. They were able to get blood return from my port right away, so there was much less waiting around. I was in and out in three hours. It still seems like a breeze compared to my last rounds of chemo. I'm still not sleeping well due to the Xeloda. My blood sugar is all over the board again. I'm back to testing routinely and taking insulin when needed. The blood clot doesn't seem to be getting worse. I still have man veins and some pain. I am on continuous Coumadin (blood thinner) and I can't ski this year because of that. If I fall or get crashed into I could have internal bleeding. Sometimes I feel like an old person who could complain all day if you let me. I try not to. The best news ever is that I have two chemo's left and then I'm done. I see my oncologist tomorrow and will find out about scheduling the surgery to take the port out.