5 Ingredients to being a Cancer Survivor

When I was diagnosed with AML Leukemia on September 3, 2008 you could say my life took a dramatic turn. Immediately you might think "oh yea...a turn for the worse!" Well, you would be right...at least at that specific moment in time. Cancer runs rampant in my family. My Grandmother and her three siblings all died from different kinds of cancer and if that wasn't enough, my Mom had recently been diagnosed with lung cancer. Yep, a life-long smoker...and she was still smoking throughout treatments...but that's another story. 

That fateful Day got me thinking "How am I going to survive this??" Well, over the course of about a year, I came up with a recipe of sorts on how to create a Cancer Survivor. Just as if you were baking a batch of chocolate chip cookies, if you leave just ONE ingredient out...your once desirable end product is kaput. That's how I believe it is with cancer survivorship. Just leave one ingredient out...and well, you just not might make it to your 85th birthday. So, over the course of the next few weeks I'll let you in on my "recipe."

Today, let's talk about...

Ingredient #1: A Great Medical TEAM

Way back upon my initial diagnosis, I was in tears about just hearing the news. My Mom had called on my cell phone to ask how my appointment went. Thank goodness for caller ID, right? I forced the cell into my husbands' hands..."I just can't talk to her right now," I said. When he hung up the nurse had already made arrangements for me to head out immediately to the Mayo Clinic in Rochester, MN. Ok...well, I had to immediately head to my local hospital in North Dakota to be stabilized first...then off to Mayo. We were thrilled! Aren't they the best in the nation? Yea...right!

Fast forward to September 5th (coincidentally our son Colt's 14th birthday). As I was getting a blood transfusion, yet again...the nurse came in and said we would be leaving for Omaha, NE sometime within a few hours. WHAT? I thought I was going to Mayo Clinic!! Well, turns out that Mayo was not on our insurance company's list of providers...so University of Nebraska Medical Center it would be. Initially we were disappointed, but we had lived in Omaha before - actually it was my husband's first duty station upon his Air Force enlistment. So OK we thought...at least we'll have a few people in town that we'd know.

From the moment we arrived at UNMC, our hopes lifted! 7th floor OSHU was staffed with especially caring nurses, welcoming PAs, and a team of Oncologists that could not be beat. No where, no time, no place. The first doctor we met was my Oncologist, Dr. Maness, and she explained some basic things for us. How treatments would work, the possibility of a bone marrow donor, etc. The next day on rounds though....no Dr. Maness. The next day...nope, we didn't see her again that day either. "What gives?" we thought. Well, turns out their practice is a Team effort. Several oncologists all meet together to discuss each patient on an individual basis. They come up with a plan tailored especially to each individual patient based patient history, results of DNA and other tests, aggressiveness of the disease...and the list goes on. All in all, we didn't see Dr. Maness very much on rounds. But...each and every oncologist on the team was absolutely amazing, caring, informative, and willing to spend as much time as needed with us answering questions (some in duplicate) to help us understand each and every step along the way. By far the best "on the scene" staff members were the nurses and PAs...again, always taking time to listen, let me cry on their shoulder, exchange stories of our kids and lives, and so very much more. Some even follow me to this day on my www.CaringBridge.org page. They truly became part of our family. So much so that I did go through a period of "separation" from them when my inpatient days were over....but that is for another time.

OK - so I've rambled on a bit. But here's the jist of it all...find yourself a great medical TEAM. Not just a great oncologist...but a full team of specialists who individualize your treatment. Visit different hospitals and see how their system works. If you're not comfortable with your initial oncology referral, listen to your heart and go somewhere else. After all, you are your own best doctor...Ask questions, do research, get 2nd opinions, but above all...be comfortable with who is on your team. 

One thing I will always remember from treatments and my favorite PA, Paula...is what she said to me one day "We're in it for the cure."

That's what your team should be saying about you!

Next time, I'll talk about Ingredient #2....nope, sorry...not giving it way that easily! 

Links to check out from this post:

http://www.caringbridge.org/

http://www.nebraskamed.com/

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Website: www.cancerkaleidoscope.com

Happy 2013!

Well, here's to another year down...and many troubles behind us. I'm looking forward to good things health-wise in 2013...how about you? 

For example, due to my AML Leukemia, I have been dealing with pain in my knee for about 1 1/2 years. After being told by many doctors "You'll have to wait until you're 50 before we do anything surgically," I finally found an Orthopedic surgeon who is willing to replace my knee. Why did this happen? Because Leukemia is a blood cancer, there was little blood supply to my knee...and now, no blood supply to the inner part of my humorous (thigh bone). Hence, the bone is now dead....cartilage is fading fast...and to top it all off, there is a fracture at the join and top of my tibia. SWELL! Every step I take is will severe pain. So here comes me, limping along with my cane...to the "oh my! what happened?" questions and the "Oh my...not a knee replacement!" in response. People are somewhat confused when I say "Oh YES! It's about time." I'm ready....beyond ready in fact. 

So I've set some goals for myself this year. In 90 day increments. On January 2, 2013 I forced myself out to my local YMCA to set a course for strengthening my leg muscles for surgery. The YMCA is the place that got me back on my feet after being severely lethargic a year ago due to cancer. The Livestrong program literally brought me back to life! I lost 30 pounds last year, in an effort to get back into some sort of attractiveness and also to alleviate some of the weight off my bad knee. Visalus to the rescue there! Their protein shakes (otherwise known as Body by Vi) added to my energy level, decreased my "chemo brain" significantly and kick-started my weightloss and wellness program. 

A great tool came across my email the other day. It's ETR Transformation Contest...and it's not about the money. This is where I began my 90-Day journey...also coincides with the new ViSalus 90-Day Challenge. Check it out: http://transformationcontest.com/Profile.aspx. This site allows you to set some transformations for yourself in the areas of Health, Wealth & Wise. Set up your challenges, and then track your progress each day. Expert advice and feedback from others is inspirational and will help you stay on track and reach that transformation you desire for yourself. 

I've also order a few books for myself (from Amazon.com of course). The first is "Q & A" - a 5 year journal type book that asks you short questions each day such as "What is your mission?" or "What are you reading right now?" Answer the question every day for a year...then start all over again next year. Great tool to help you see where you have been and in what direction you want to go. 

I also ordered "It's Not How Good You Are, It's How Good You Want to Be" - it is a handbook of how to succeed in the world - a pocket 'bible' for the talented and timid to make the unthinkable thinkable and the impossible possible. It is a quirky compilation of quotes, facts, pictures, wit and wisdom, packed into easy-to-digest, bite-sized spreads. Quick readying...even if you just have 10-15 minutes a day. This would be part of the "Wise" part of the Transformation (Q & A, too).

So before we get too far into 2013, I encourage you to set some goals/transforations/resolutions for yourself. Then break them down into smaller, more maneagable chunks. Get out a good, inspirational, motivational book and read a page or two a day. Keep that positive mental attitude and plunge forward day by day into a year of healing...mentally and physically...financially, too....Might as well.

As they say, "There's no day like the present" so....get started!

BTW...for more information on the Livestrong program and ViSalus at www.cancerkaleidoscope.com.

Thanksgiving....a time to be thankful for LIFE!

As Thanksgiving approaches, we all have much to be thankful for. Even as I went through treatment for Leukemia, and a bone marrow transplant, I was always thankful for LIFE! After all, there were many patients at the University of Nebraska Medical Center that were a lot worse off than I was. And not only at the hospital, but all over the world. Unfortunately, sometimes it takes a real trial in our lives to put things into perspective for us. After all, God has given me a roof over my head and food on my table every day. At that's just the start. He's blessed me with a man who loves me unconditionally...even through the ups and downs of cancer treatment. I'm not saying that was easy for him, but he did stick around...unlike some spouses who just up and left their husbands or wives in the middle of treatment to go the road alone. My husband and I are blessed with three healthy, happy children...who are all very talented...not to mention beautiful inside and out. They were never into drugs, rebellious, smoked, or drank alcohol while underage. Ooohh...better bite my tongue as our youngest is still only 14 years old! xxxx

Although I live far from my family, we remain close through regular phone calls and annual visits. Although my Mom passed too early from Lung cancer, I am thankful for all the memories we built together...and the way my parents brought us up...things we now pass down to our own children. I am thankful, too, for my father...who after many years came and stood by my side during my cancer journey. Today I am blessed with a great relationship with him...all because of cancer.

I am thankful for my great support team (friends and family throughout the country) and awesome medical team at UNMC for their knowledge and for "being in it for the cure." And especially for my sister, Amy, who proved to be a perfect 10/10 donor match for me...and the ultimate tool that put me in remission.

In closing, I would like to share some snapshots of the past few years of my life. I hope they will jog your memory as well...and put your life into perspective, too. Remember, Life is Good! and I wish you and your families all a very blessed Thanksgiving.

  

How do you deal with folks who come to you for advice on cancer?

I came across this post yesterday in another blog and thought it deserved my attention. How do I deal with folks who come to me for cancer advice? Well, at first I was always on the verge of tears when speaking about my journey. It is kind of like any other stressful, challenging event that takes over your mind. It often helps to speak about it and "get it out in the air." Through doing this, it became easier and easier to talk about my journey. Until now, I'm wondering if my talking cancer to just about everyone I meet, will ever end! I just can't help but always bring it up...whether it be in a serious conversation, quoting statistics, or mentioning my "chemo curls." 

As a Survivor, I realize that many people are curious about my story: how I overcame my illness, in the face of great odds, how I dealt with Chemo and it's negative effects, etc., how I was able to maintain a positive attitude when cancer really does suck. People are naturally curious whether they are survivors along their own journey or just in awe of survivorships....a road they have never endured. Most people who ask realize I am not a doctor, and I don't pretend to be. I am an ADVOCATE and have done my research, can quote statistics, and know most of the cancer ribbon colors by heart. However, sometimes I think I fail others who ask about my experience in the fact that I've forgotten many of the details of my journey. Maybe I blocked them out in denial, maybe I just don't remember because of the "chemo brain" I had, etc. I am honest about this with them and often times their questions jog my memory and I end up saying "Oh yea...I remember now." 

Cancer changed my life...now I am happy to share my experience and what I've learned along the way. I've even done a bit of motivational speaking to a group of medical students, and am usually the first to comment in my cancer support group. But my greatest accomplishment has been to start my own business. Cancer Kaleidoscope was born to help others in their journey. It's a "one stop shop" for knowledge (educational links), health and wellness tips (links to products I've used with success and stand by with conviction), support links (for emotional and financial support) and the arts (unique hand-made products that celebrate survivorship and artists who donate to the American Cancer Society to fight back against cancer). It's my way of paying it forward. Check it out at: www.cancerkaleidoscope.com. If I can help one person through a single link, then I've done my job. I'm proud to be a Survivor! Art is my passion, but Cancer drives my life.

Blessings to you in your journey...be it cancer, diabetes, or just life in general.

My sister Amy and I during her marrow donation (January 2009)

How do you stay positive when most of the news you get is bad?

I recently was asked about this by a friend who was going through Leukemia. She had gone through a bone marrow transplant (unrelated donor, 7 out of 10 match) and was experiencing some GVHD (graft vs. host disease) in the form of a bad rash and also some intestinal tract issues. Her doctor felt the donor's marrow might not be grafting. 

The day I met with her, she was in tears. She admitted that she was doing better that day but the day before she had just wanted to give up....she was so weak and tired...she really thought that was going to be the end. Of course, it wasn't. But her feeling of hopelessness that day was a pure cry for support, affirmation, positivity, and assurance. So what do you say to someone who is feeling so uncertain about the future?

STAY STRONG! is always my message to her. But how do you really do that in the face of adversity?

A few tips I had for her were these:

• Seek support in the form of hugs and conversation with your family and friends.

• Be distracted....by your favorite movie, songs, books, play with the kids, or the cat or dog, puzzles, draw or paint, and keep busy. Remember what they say about humor? It's the best medicine.

• Let it out...speak openly about what you are feeling...no one has to even be there to listen. Sometimes just getting the words out of your mouth and into the air really helps take some of the weight off your shoulders and mind.

• Journal...again, spilling your guts on the page is a great way to get it out of your head.

• Focus on the good things....like the warm sunshine glaring through the window, the soft cat purring on your lap, your well-raised children, the nurses who come to your beck and call - EVERY time, and the fact that you are simply ALIVE!

• Ignore the numbers and statistics and focus on LIFE. We all will expire one day and no none knows when...not even the doctors. So when they say "you have x months to live" focus on LIVING! Before you know it, you may be proving them and their timelines wrong. It has happened before....and will again in the future. Miracles happen every day.

• Believe in the power of prayer...have a chaplain come into your room everyday (in the hospital that is) and just visit with you. This helped me tremendously...we actually became pretty good friends, too.

• Have a "pity party" - cry, moan, complain, and let it all out....but only for 10-15 minutes. Then count your blessings and move forward with a smile on your face. Enjoy the rest of the day.....and oh yeah, you can have more than one "pity party" a day if you need to, too.

• A positive attitude is the major ingredient of a good outcome. I never pictured me gone... I saw myself seeing my daughter graduate from college... and next year I will when she has her final show and graduates from SAIC as a budding fashion designer. I've already seen my son graduate from Navy Basic Training and A-School....and he's now on his way to becoming quite the young man. My youngest is over halfway to his black belt in Taekwondo and I'll be there when he finally tests. And my husband and I still have our eyes on that "dream" log home for retirement. 

So next time you are feeling down and out, remember this list and...."Just lift up your chin, and grin, and say....the sun will come out TOMORROW!"

How Do I Keep the Faith....

I came across a question today through WhatNext.com. If you are unfamiliar with it, and are still in treatment (or not), GO THERE! www.whatnext.com. It is a social networking site for cancer patients/survivors/loved ones...and you can get matched up with people who are dealing with the same diagnosis as you. Lots of great Q & As....check it out...it's well worth it!

OK...so about the question. How do you keep the faith when your prayers don't seem to be getting answered....

One of my favorite quotes is this: "If God brings you to it, he'll bring you through it." When I was in the hospital, many people were praying for me. Sometimes it just takes some time for those prayers to be answered. Remember the movie "Bruce Almighty" with Jim Carey? There is a scene in that movie after Bruce "becomes" God...where he is freaking out because of the constant barrage of prayers...and tries to organize them so as to better deal with them. Something like a 4 million emails asking for this or that come through his inbox. Don't you think God gets overwhelmed with everything we ask for, too? My best advice: be patient! and above all STAY POSITIVE! 

One thing I do is call my best friend every morning and say "Page number, please?" She picks a number, say 37, and we both open our book called "Now is the Time" (available on Amazon.com). Turning to the page, one of us reads it aloud and then we discuss. Some messages are faithful, some are inspirational, some are motivational. But one thing is always constant....we get our day off to a great start. A bit of helpful advice, and talking to my best friend every day....what could be more supportive than that?

Also, if you are still in the hospital, make sure you ask to have the hospital Chaplain visit you every day. Mine was always there to ask how I was doing, we'd discuss the ups and downs of the day, chit chat a bit, learn about each other, and she was full of positive messages ~ like God loves me. We'd always end the visit with her praying with me. She became a good friend. So here's to you, Chaplain Maria...

I also used to pray for my past loved ones to come to me in my dreams. One night I had a dream/vision where passed relatives showed up one by one on a cloud. By the end, they ALL were there watching over me...showering me with love and support. I asked...and they came. I'll never forget that image and from that night on...I was at peace with whatever came next in my journey with cancer.

So surround yourself with loved ones, positivity, find a motivational book to share, and remember: don't sweat the small stuff. Cancer is definitely not small stuff...but break it down into manageable parts and you can take it one step at a time until you're there....SURVIVORSHIP!

Blessings to you in your recovery and remission,

Lisa

First Relay for Life Committee Meeting

Well, last night was my first 2013 Relay for Life Committee Meeting. So, you may ask....what exactly is Relay for Life? I, too, was once in the dark....it's only the BIGGEST event of the year for the American Cancer Society. What's the purpose? To CELEBRATE Survivors, REMEMBER loved ones who've lost their battle with cancer, and FIGHT BACK against the disease that steals so much from those we love and our families.

Originally, when Relay began in 1985, one man ran around a track for 24 hours. He raised $27,000 that night. And it has grown from there....to include over 5,200 Relay events in the US alone and more than 1,000 in 20 other countries. So, last night when our ACS Representative brought up the proposal to shorten our event from 12 hours to just 8 or 9....I thought..."but that's defeating the whole idea!" Cancer never sleeps, and neither do (or did) Relayers. For just ONE night a year, couldn't we put forth the effort and stay up all night to make a difference in a cause that might help end cancer forever? When our Committee hashed out the argument, we came down to this....Relay celebrates SURVIVORS. And if a shortened event would bring more teams, more funds, more activities, involve more participants and ultimately raise more awareness, so that one day there will be more Survivors, then that is the way we should go. So goodbye old Relay format...hello to a new, bigger, better event! Change for the most part is hard to deal with....but in the long run, it just takes time to adjust to something better.

Undoubtedly, when I recruit new Team members this year....I certainly won't be hearing "But do I really have to stay ALL night??"

To find out more about Relay for Life, find an event near you, join a team, start a team, or volunteer, go to:
http://www.relayforlife.org/

And watch the Relay Story below.

Hoping, praying, and walking for a CURE!

~ Lisa