A dolphin excursion is just one of the optional outings available on the cruise.
I celebrated my birthday in April going on the Thrivers Cruise sponsored by Breast Cancer Wellness magazine. It was amazing! How many people can say they spent their birthday floating on a tube through a beautiful cave in the Belize rain forest then going back to the ship to be serenaded with “Happy Birthday” by an international group of handsome waiters? The best part, though, was the fellowship and friendships formed with all the women in the group.
I enjoyed my experience so much I wanted to share details of the upcoming Thrivers Cruise. Mark your calendars for January 22–26, 2015, for the West Coast Getaway aboard the Crown Princess. The ship sails out of Los Angeles, CA for five days and four nights of fun, adventure and friendship. Packages start at $449 per person (Price does not include travel to LA, gov’t or port fees).
Beverly Vote, editor of Breast Cancer Wellness magazine tells us of some special highlights of the cruise. “There is a TV crew coming aboard the 2015 Thrivers Cruise. They will be filming two 1 hour documentaries about the Thrivers Cruise and breast cancer survivorship! And Dr Lisa Curcio will also be joining us. She is one of the leading breast surgeons in the world. Diagnosed with breast cancer at age 37, Dr Curcio has amazing information to share with us.”
Optional shore excursions include:
• Hollywood Walk of Fame
• Universal Studios
• Lunch on Rodeo Drive
• Wine tasting near Santa Barbara
• Whale & dolphin excursions
• Snorkeling, exploring, shopping
For more information, contact Connie Saunders at Total Travel and Events, 1–866-499‑4074.
Want a chance to win a free cruise? Click HERE to apply for the contest!
Me at my seventh birthday. Back then, my only uncertainty was what gift I was getting.
One of the most surreal experiences of living with advanced cancer is that you go about living your life, knowing it all can explode – like the missiles in Israel – at any time. I see it happening all the time with friends on social media who announce scan results — “Not what I wanted to hear … the cancer has spread.” Probably most people wouldn’t even know what they’re going through if they see them. Many of us, like me, keep their hair and are not gaunt or pale.
I remember my late friend Evan Mattingly saying, “Cancer must be making me better looking because people are always telling me how good I look!” This has been my experience. I just compliment them back. I am so grateful that I am feeling relatively healthy and able to travel and do activities. But I still live with an underlying sense of uncertainty that I try to tuck away until it is almost impossible to avoid. That comes at scan time. I have been on the same regiment – Afinitor and Aromasin – for a year and a half. It has been doing a wonderful job making the cancer behave, and even making some of it disappear. Next week I’m due for scans and it seems like an eternity. There is always a little voice inside my head saying, “Has my luck run out? Is that pain in my abdomen cancer?”
There are several things that help me get out of this mindset. I’ll list them here as it might help others going through the same thing:
- Stay in the moment. How do I feel right now? What am I doing right now? Am I breathing, functioning? Good. Focus on what’s in front of you in the moment.
- Faith in God. God has carried me this far; I can trust this will continue.
- Be proactive. Expect the best but prepare for the worst. I have been researching promising clinical trials to have in my back pocket if the scan shows growth.
- Practice gratitude. I can focus on what’s good in my life, which above all is my husband and daughter. I have great extended family and friends. I get to do what feeds my soul like my upcoming book and this blog. I have visited beautiful places. I feel good enough to take walks around the neighborhood. The list goes on.
- Reach out to others. Helping others helps me feel connected and takes my mind off my own worries. I can also reach out to friends and support systems to express my feelings and situation.
As Gilda Radner said, “Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what’s going to happen next.” Whether or not you have cancer, I think these are wise words. We all live with uncertainty, but to be present — that’s the real gift.
Want to share more about this topic? The Share Support Group, which supports women facing breast, ovarian and metastatic cancers holds evening telephone support sessions twice a month. There is one tomorrow night (July 24). For more information, go to http://www.sharecancersupport.org/share-new/support/groups/living_with_uncertainty/
Life is a beach and then you fry ... unless you take precautions! Our slice of paradise on vacation.
Our family just returned from a fabulous vacation on Ocracoke Island off Outer Banks, NC. We had a great time going to the pristine beach, eating seafood and riding around in golf carts. Too bad our vacation was cut short by Hurricane Arthur.
First on our list of things to do was to go to the beach, so we headed out our first full day at 10 a.m and stayed until 2 p.m. Even with sunscreen, we all got burned. We decided that for the rest of the trip we wait until after 3 p.m. to avoid most of the harsh UV rays. It’s usually a tough sell with my 15-year-old daughter when I urge her to wear sunscreen and cover up as much as possible. She thinks I’m being paranoid. After all, we’re both dark complected and rarely burn, but I know that is especially important for her to be careful. A recent study published in the journal Cancer Epidemiology, Biomarkers & Prevention, suggests that experiencing five or more sunburns between the ages of 15 and 20 could increase melanoma risk by 80 percent.
Before we left on our trip, I met with LeAnn Blair from Melanoma Know More, a local organization dedicated to awareness, prevention and treatment. As the dog days of summer are here, I thought I’d share some prevention tips from their site:
- Avoid sunburns. Getting a base tan to protect from sunburns is a myth.
- Limit sun exposure, especially between the hours of 11 a.m.- 4 p.m. when the sun is the strongest
- Wear protective clothing – such as long sleeves and hats – when exposed to sunlight
- Use at least a SPF 30 sunscreen – applying 30 minutes before going out and 1-2 hours thereafter. Use at least one ounce (a full shot glass) of sunscreen to cover your entire body
- Use sunscreen as a part of your daily moisturizing ritual and when you’re outside for than 10-15 minutes, even on cloudy days and during the winter
- Check yourself monthly for changes in moles or anything that looks suspicious.
I make it a point to visit my dermatologist regularly to check out any weird spots. Mike noticed one on my back recently, which turned out to be pigmentation due to aging, but I’m still glad I went. About 15 years ago, I had the pleasure of meeting the late Maureen Reagan, daughter of the former president. She had late stage melanoma at the time, and one of the things she urged us was to get a yearly body check from your doctor. From my experience, it takes a long time to get scheduled for an appointment if you’re a new patient, so I recommend getting in before you notice a problem.
Even if it does turn out to be melanoma, there are treatments available and more are coming on the horizon. Mark Williams, a super stage IV melanoma survivor who will be in my upcoming book, Miracle Survivors, is a living testament to hope with melanoma. Diagnosed in 2007, he has shown no evidence of disease since 2009.
Concerned about a mole? Melanoma Know More’s website has a handy chart, that shows how suspicious moles appear. In most cases, moles turn out to be nothing, but it’s important to be proactive. Happy summer!
Little Paul with George H.W on Air Force II.
This past weekend, Mike and I went to a very special wedding. In fact, Mike was part of the wedding party, which made it extra special. For those of you who read From Incurable to Incredible, you might remember Paul Falk, who was diagnosed with terminal leukemia at age 9. He was so sick and treatments were so limited at the time (1986), his doctors gave him at most six months to live. Being a determined and intelligent kid, he “wasn’t having any of it.” Paul was enrolled in a clinical trial and was the only child who survived. This past Saturday, he got married to his long-time girlfriend Melody and became father to her two beautiful girls from a previous marriage.
It was a lovely, rainbow-colored event, and the weather was absolutely perfect. As I watched them exchange vows with the evening breeze ruffling my dress, I was reminded it indeed was a wonderful world, as their first dance song proclaimed. It reminded me, after going to so many funerals, there is hope and new beginnings in life.
After Paul was done with treatment, a local organization that funds “wishes” for kids at Children’s Hospital funded a trip to meet President Reagan. As it turned out then Vice President George H.W. Bush took a special interest in Paul, inviting his family on Air Force II and giving him the royal treatment. The elder George had lost a child to leukemia and wanted to make sure Paul’s day was extra memorable. At the wedding, I got to sit next to the couple who lead the organization that sent Paul on his amazing trip. After Paul contacted them and gave them a copy of my book, they decided to pay for Paul’s college tuition. The blessings continue.
It’s not that Paul hasn’t had struggles since his victory over cancer. He’s still building his life back after years of alcoholism and addiction. In the book, he describes how he realized he needed to get back to that little boy who said “No way in hell” he was going to give up. And he remains clean and sober to this day.
I was so inspired by this act of hope and optimism, I suggested to Mike that we renew our vows on our 20th wedding anniversary. That’s three years from now, the year Chrissy will graduate from high school. If I keep up with this blog, I’ll certainly post pictures! As someone with stage IV cancer, I know there are no guarantees. But that is one of my goals and like Paul, there is no way in hell I’m giving up.
The happy family on wedding day
I loved the movie, but didn't like the way it made me feel
I sped through the book, The Fault in the Stars. and so did my daughter. Then we went to see the movie. I didn’t cry during the book; I just felt sad. Add in some great acting, sentimental music and all the other trappings of a great movie, and I was a sobbing mess. I told myself they were cleansing tears, but they weren’t the kind that made me feel better. It reminded me about the mortality facing me as I look at my 15-year-old daughter: that powerlessness that perhaps I won’t be around to see her grow into a woman. Thank God for distractions like a nice walk with my husband and an evening of Netflix to put me back into my one-day-at-a-time state.
A beautiful quote from the movie is when dreamboat Augustus Waters says, “That’s the thing about pain. It demands to be felt.” I struggle with that a lot.
I’ve been talking to my therapist about stuffing my feelings with food, Facebook and television. The food part is the most worrisome because I have gained weight and am not happy with the way I look or the possible health consequences of it all. I have developed a “Just f*** it” attitude about my diet. For five years, I obsessively stuck to a regimen of no-sugar, no-white flour, no-alcohol, no-dairy, diet. I swallowed an inordinate amount of supplements. And still my cancer kept coming back. So I’ve eased up a bit, maybe too much, to be honest. I still buy organic, don’t drink soda or eat red meat, but I’ve decided I want to have fun, too. And here I am 15 pounds overweight. So maybe instead of reaching for food, I can try to figure out what’s eating me.
So is Augustus right? I think to a point. The thing about living a long time with metastatic cancer is the pain is always under the surface. I can always go to the deep, dark place about fearing “oblivion,” a point in time where I’m no longer here in my physical state. I can imagine my daughter’s and husband’s life without me. I can fear the physical pain of dying. But I choose not to go there, because it’s well, too painful. And frankly, I believe it is not good for my physical or emotional health to be in that state, at least not all the time.
There is that part of me, my faith, that reminds me that God is in charge. And so far, God has taken pretty good care of me. I can appreciate each day for what it is. Today I woke up. That’s a great start! I had an appointment at my oncologist’s office yesterday and he didn’t even see me. I just got a port flush (the catheter used to infuse chemotherapy). I was annoyed at first; but obviously there is little to talk about these days. I don’t even get infusions anymore thanks to Afinitor, an oral chemo I’m taking.
Sure, next month I get a PET scan, and who knows what it’ll say. That’s the life of someone in limbo like me. I could need to change treatment or could be celebrating that what I’m on is still working. It sucks, but do I need to wallow in fear about it until then? It will come up as it always does, but the length of time I feel the fear has become less over the years. I realize that worrying about it won’t change the outcome.
I could definitely relate to the movie’s theme of losing friends to this awful disease. It is just obscene how many young women and men are dying, and they all seem to happen in clumps. I don’t go to the place where I’m thinking “Am I next?” I have found that feeling the pain of their passing, then moving on with my life is the only thing I can do to keep my sanity. I continue my life, one day at a time, in their memory. They deserve to be remembered by the people who loved them.
So I guess the caveat of the whole thing is pain demands to be felt, but the danger is hanging on to the pain. Because the thing about pain is, it’s not meant to last forever.
Me back in the day, a victim of 80's fashion
Last weekend I had the opportunity to get together with my “old gang” — friends I hung around with in high school, college and in my 20s. I was a little nervous; a couple of them I hadn’t seen in a couple of decades. But we were immediately joking and telling stories like we did back in school. I forgot what it was like to laugh so hard that I cry. It was so fun!
I’ve been doing a lot of reminiscing lately. For instance, right now I’m listening to Depeche Mode on Pandora radio. It reminds me of simpler times, BC – before cancer. Looking back, the things I worried about seem so trivial – finding or keeping a boyfriend, whether or not I had weekend plans, and thinking I was not good-looking enough or fat – when I was about 20 pounds lighter than I am today. I didn’t really love myself or realize how blessed I was.
Of course, youth is often wasted on the youth. I never dreamed of the life I had now or that I’d be looking death in the eye starting in my 40s. I didn’t know that having a boy/man in my life or being beautiful was not the key to happiness. But most of the time, as I was reminded, last weekend, I had a lot of fun.
And I still have fun today, even with the shadow of cancer looming over my head. I had an amazing time on the Breast Cancer Thrivers Cruise in April, spending quality time with my old college roommate – we were cabin mates this time! I even got to spend my birthday on the cruise, complete with ice cream and cake after dinner!
These experiences reminded me that I’m not too old or too sick (thankfully) to live a life of joy and laughter. I may be 51 in my body with all the aches and pains associated with cancer treatment and aging, but that young person is still inside of me. I’m lucky because I get to experience some of that joyful exuberance with my 15-year-old daughter. I live vicariously through driving her friends places, going to band competitions and track meets and going clothes shopping with her. And I continue to nurture my inner young person by making sure I get enough laughs and connection with others. I won’t be riding roller coasters at the amusement park, but I think staying young at heart is the best medicine for me rather than focusing on the roller coaster ride of cancer.
Some tips for recapturing your young self:
- Get together with friends who knew you back in the day and find things to belly-laugh about
- Go to the pool and practice standing on your hands in the water or just floating on your back
- Read a young adult book or watch a young adult movie (or you can flashback to some John Hughes films like Pretty in Pink or Breakfast Club)
- Spend time with some young people (if you don’t have a child or grandchild, borrow one of your friends’)
- Eat a refreshing summer treat (ice cream may not be good for you, so try watermelon or a fruit pop)
- Play miniature golf or do some other summer fun activity
- Listen to songs from your youth or go to a rock concert – dancing and/or singing along is required
- Take a vacation and get away from it all. And if you dare, do something you’ve never done before.
Gail Ingham continues to beat the odds.
Gail Ingham contacted me on my Facebook fan page as I was busily finishing my manuscript for my upcoming book, Miracle Survivors: Beating the Odds of Incurable Cancer. If only I had heard from her a month earlier; she would definitely been in the book. Oh deadlines! But I wanted to make sure you hear her amazing story, so I’m featuring it today.
My journey started 29 years ago. I had pain and never experience abdominal main unless I was in child birth. After an examination they determined there was a mass. During surgery the cancer was both ovaries, out- of the uterus, through the wall of the rectum and four malignant tumors towards the intestines. After surgery, I had 13 chemo treatments that consisted of Cytoxan, Cisplatin and Adriamycin.
I could not eat most items; they made me sick. The only thing that tasted good were vegetables and plant foods, so I started eating them multiple times a day — even for breakfast with my eggs. I prepared my own spaghetti sauce from fresh tomatoes, fresh herbs and spices (no sugar) and still do this even today. I was fortunate;, with the eating changes, I did not miss one treatment.
I had two young sons, which helped keep me active. It was agreed that I would send them off to school and at the end of the day, I would meet them when they got home. Staying active with them helped with the neuropathy that comes from chemo. I also discovered that horseback riding is great therapy for neuropathy. It helps balance and build the body, plus it works the brain. To further help with balance, I also did simple exercises in the kitchen while fixing food, cleaning, or just being with the boys. I still work on it; not just because of the cancer, but also because of getting older.
I have been cancer-free for 29 years. Because I believe in total healing, I still work at being healthy naturally. That means I continue to eat healthily, exercise, and incorporate relaxation, laughter and enjoying family of friends. I am extremely fortunate I do not need medication because of health issues from the cancer.
Cancer is something you have to fight and fight hard to beat the rest of your life. After you have been diagnosed with cancer you have to realize there isn’t too much you can do to get to your optimum health. I speak to groups to help make an awareness to this disease. I encourage women to get a full gynecological exam on a regular basis because pap smears do not detect ovarian cancer. Just as important, I want women to know there is hope; don’t give up.
RIP, Maya Angelou
“My mission in life is not merely to survive, but to thrive; and to do so with some passion, some compassion, some humor, and some style.”
- Maya Angelou
Today we learned of the passing of Maya Angelou, an author, poet, civil rights activist and, yes, thriver. When I was in my sophomore year of college, I took a women’s literature class. It was one of my most memorable academic experiences, and my favorite work was Maya’s I Know Why the Caged Bird Sings. It’s been decades since I read it, but it inspired me to overcome the many hardships I had from my turbulent childhood. She had a horrible experience — being raped by her mother’s boyfriend, among other things — and used the experience to transform her life and the lives of millions of others.
I’ve always been drawn to and inspired by “overcomers” like Maya Angelou. It gives me hope that even the most terrible things can be conquered and used for good. Perhaps that is what led me to work on myself so I could end the cycle of abuse, addiction and depression that broke my family of origin. And it is what led me to write my first book, From Incurable to Incredible, my upcoming book, Miracle Survivors, and to travel the country to share my story and other stories of hope.
I consider Maya one of the great teachers of all time. Her words spilled out like flowing gold. I have read many of them on Facebook and on Google today. There are a couple that have stood out for me the most:
Here’s a quote from an article announcing the opening of her Women’s Health and Wellness Center in North Carolina: “I learned a long time ago the wisest thing I can do is be on my own side, be an advocate for myself and others like me,” she said. “If I do that well enough, then I’ll be able to look after someone else. But I have to look after myself first. I know that some people think that’s being selfish, I think that’s being self-full.”
Wow, I love the concept of being self-full! It’s not being full of yourself; it’s taking care of yourself first so you can be around to help others. I think women in general have a hard time with this … even after having cancer. I have talked to many women who are nice to the point of it being detrimental to their health. They just can’t say no, and they are afraid to ask for help for their very real needs. Sometimes this means being afraid to question their care and staying with a doctor who is obviously not helping them.
For others, cancer is a wake-up call. They have learned they absolutely must advocate for their health if they want to stay alive. It doesn’t mean they aren’t nice; they have just learned to put their care and life first. It took being diagnosed with stage IV cancer to finally learn how important it was to “look after myself first.” When I’m in a crossroads in treatment, I get second, third, fourth opinions, but the decision is always mine. If I’m feeling overwhelmed, I say no to things. And I don’t put up with people being draining, unkind or unfair. I’ll speak my mind. If it’s a toxic relationship, I’ll end it or significantly reduce contact. My health is too important.
On living life to the fullest
“Life is not measured by the number of breaths we take, but by the moments that take our breath away.”
I find this quote extremely comforting as I witness so many wonderful, young women and men who have died of cancer. I can never understand why, but as I look back on their lives and photos they have shared on Facebook, I can see they squeezed every moment out of their lives. They loved freely, traveled to fabulous places, embraced their families and friends, and touched so many people around them. Their lives mattered and left a permanent mark on the world.
And so it is with Maya Angelou. She certainly left her mark. Bravo, Maya, on a life well done!
Kristi with her daughter
As a long-time survivor of stage IV cancer, I feel I live in the precarious balance between hope and heartbreak.
This week was a perfect example. There are lots of reasons to be hopeful in my life. I’ve been feeling well and have had the longest winning streak since I started on chemo back in February 2008. I have been on the Afinitor and Aromasin combination for 17 months now and I’ve been feeling pretty great. Sure I have some side effects – joint pain, loss of toenails, acid reflux … but I’m alive and it’s holding the cancer back and even reducing it. I went in for a regular check-up with my oncologist and he said he told his medical student that she should see me because I’m a biological miracle. I know I’m lucky because the combo doesn’t work for everyone.
Of course, there is a small worry about it not working anymore. This comes up especially during scan time. But I just learned yesterday that palbociclib, a promising treatment for advanced ER-positive breast cancer that I’ve been keeping tabs on is being fast-tracked for FDA approval as soon as this summer. At the same time, I’ve been buoyed by all the amazing stories of people who are beating the odds of stage IV cancer that I’m sharing in my book coming out this fall.
Then there’s the heartbreak. This past weekend Kristi Sacksteder Frazier, a 35-year-old wife and mother of two beautiful young children passed away from stage IV breast cancer. She and her husband pulled strings for me when I was in dire straights two years ago so I could get in to see the head of the Ohio State breast center. A gorgeous family inside and out.
Then there was another young mother, Jamie Spring, with whom I was on Facebook. And then I heard about two others. The other night I tried to go through all my Facebook friend contacts to try to remember the name of another woman who passed away this year. I was her mentor through Imerman Angels, and I couldn’t even remember her name. I feel so terrible about it; like I’m a horrible person. But the sad thing is there are so many, that I’ve lost count. I’ve almost become numb to it all, probably how doctors train themselves to be. I think it’s a defense mechanism. Perhaps I’ve run out of tears.
So there’s the paradox — remaining hopeful and grateful despite the tragedy around me. There’s some survival guilt that I can be living so happily and hopefully when others much younger than me have not been given this gift. I never really understood survivors guilt as others have described it. It’s not that I feel guilty for being alive, but should I feel guilty for being hopeful and grateful? As I told another fellow survivor, the best we can do is to live each day to the fullest, carry on their legacies, and be the beacon of light for others who are still with us.
There's nothing crazy about getting help
May is Mental Health Awareness Month and today is Mental Health Blogging Day, I just learned. I’m taking this opportunity to shed light on this topic and stray a little bit from talking about cancer, even though it is difficult to share.
According to the University of Southern California School of Social Work, more than 26 percent of all American adults are affected by some type of mental disorder. About 2.6 percent have bi-polar disorder, an illness which affected my family in a big way.
When I was seven, I noticed my 15-year-old brother Mitch had what appeared to be two personalities. Sometimes he was talkative, obnoxious and embarrassing (to me). Others he was quiet and depressed. At eight, my father tried to commit suicide by running the car in our closed garage. He was diagnosed with bi-polar (then known as manic depression) and later so was my brother. My dad was more “functional” than Mitch. He held jobs, later re-married after divorcing my mom (who has un-diagnosed mental illness) and enjoyed retirement until his health failed. My brother could never hold a job or a relationship and lived with my mother until he died at the young age of 56.
Ironically and sadly, both my brother and dad passively killed themselves. My father stopped eating after he became depressed over losing his eyesight to macular degeneration. He died two weeks after I was diagnosed with breast cancer and never knew about it. About a decade later, Mitch died of a stroke, we think, after gorging himself with food and quickly gaining about 100 pounds.
To say mental illness has affected me and our family would be understatement. In my younger years, I was plagued by bouts of depression, although nothing like that of my dad and brother. It is, indeed, a family disease. Yet it is not a disease many people talk about. In fact, I feel hesitant sharing all this because of the taboo still associated with it. For some reason, our society thinks it’s just something people can “snap out of,” but it isn’t. Like any disease, it requires professional treatment.
My therapist stated it this way when I was depressed, “If you broke your leg, you would need a cast.” Depression, in my case, was a chemical imbalance in my brain. It had nothing to do with not trying hard enough or a bad attitude. I was doing everything I could and nothing worked. For a whole month I didn’t sleep; I felt like I was walking around in a fog and my body was numb. I chose to go on antidepressants to feel normal again. I know it is not a choice for everyone, but it worked for me.
I worry because I feel our country does not do enough to identify and treat mental illness. Most of the mass killings are associated with untreated disorders – from post-traumatic stress syndrome to schizophrenia. It is easy to demonize these people, but it makes you wonder what could be prevented if only they got help.
I will put in one reference to cancer. Treatment and the diagnosis alone often causes depression. It’s more than feeling of sadness; it’s a debilitating disease that can interfere with daily functions. If you feel like you’e in a hole you cannot climb out of, please get help. There is no shame, and I believe (and many studies have shown) depression can affect survival outcomes.