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

Depression and Cancer

After my cancer treatments were over, I was plagued by depression. And I was in deep! Of course I was thrilled to come through the treatments ALIVE and with a good prognosis for being cured. However, extreme fatigue from treatments, and GVHD drugs from my bone marrow transplant, led to a very lethargic, pathetic "me." I had also gained about 55 pounds once I got my appetite back. My daily routine would be to get up at about 7:00 am, feed the cats, clean the litter box, take my meds, and sit down in my LazyBoy with a bit of breakfast. I'd get about 45 minutes into the Today Show and be gone....zzzzzzzzzzz. Perhaps the phone would ring and if it was someone I wanted to talk to (caller ID) I'd answer it. If not, the machine would pick up. Back to sleep I went. Zzzzzzzz.....I'd wake up for a little lunch and "Days of Our Lives" but I usually didn't make it through that either. Uh oh! It's now 3:30 and my husband would be home soon asking if I did anything today. Better shower and look like I DID do something. And the story continued for about 6-9 months.

I was depressed of course. I had left my "old" life in ND where I had a number of close friends, support system, etc. to be treated at the University Of Nebraksa Med Center in Omaha, NE. And once I was discharged from the hospital, the few friends I did have in Omaha, stopped coming to visit. Well, of course...I was doing well health wise, and they had their own lives to live. Moving boxes were left unpacked - waiting for my attention. My Mom was also living with cancer at the time...and her days were getting numbered...and she lived 1,500 miles away. My daughter had just gone off to college in Chicago, and my husband and sons both were at school all day. I had no energy to do anything. Grocery shopping was a major undertaking! I had no energy to cook meals...that's when my youngest son learned how to cook - out of necessity I might add My husband was getting angry....why couldn't I just clean 1 room of the house a day? You sat around all day and still have no energy? Why are you sleeping 14-18 hours a day? I could put up a good front when I had to but once the dinner date, relative's visit was over....back I slumped into deep despair. Then my Mom passed away. And I reeled down the spiral again. I hated it...but just simply couldn't get out of the funk. Our once happy marriage was sinking fast, too. Even the kids noticed how my husband was becoming increasingly frustrated with my non-behavior. I honestly don't know what snapped me out of it. But I slowly began to come back from the dead...and today my "new" normal is way better than my old!

I have been in long-term treatment for depression twice since cancer....once on my own, and now with my husband. We are working on creating "our" new normal and displacing the anger and resentment we felt from the cancer OFF of me. I am happy to say, life hasn't been this happy in quite some time.

So what's my point? The point is this: Early diagnosis and treatment of depression is vital to your recovery! Treatment helps ease the symptoms, increase your quality of life, and most importantly, help you successfully participate in cancer treatment and become a "thriver" not just a survivor. The problem is that diagnosis of clinical depression in cancer patients is difficult. Is the fatigue or appetite loss is due to depression or to the side effects of treatment? It's not uncommon to feel a sense of loss, sadness, anxiety and withdrawal after first receiving a diagnosis of cancer. However, it's important to seek help if these feelings last longer than a few weeks and interfere with your usual functioning.

If you are in clinical depression, chances are someone out there is missing you....

For more information check out the following links:

http://www.mayoclinic.com/health/cancer-and-depression/MY01567

and 

http://www.goodtherapy.org/

Watch this short video about cancer & depression:

http://www.youtube.com/watch?v=FqBY2FYug5E

Why do I support the American Cancer Society?

Yes, I've heard all the hoo-ha about the American Cancer Society being the "wealthiest non-profit" in the world. But my take is like this:

1) the ACS supports ALL types of cancer....not just breast cancer, or leukemia, or pancreatic cancer, but ALL types. And there are more than 200 different types of cancer. I have had 5 family members die of cancer...all of DIFFERENT types. So when I walk Relay for Life, I celebrate and remember each and every one of them with each and every step.

2) ACS supports the PATIENT. Some cancer organizations only fund research. The ACS has programs that give patients rides to treatment, help patients "look good, feel better" (you may think this program is for women only...not so, it's for men and teens, too), offers Hope Lodge to offset costs for family members to stay near their cancer patient during treatment, and offers education classes for families, caregivers and patients.

3) Relay for Life is the largest public event for people in the fight against cancer. Individuals, teams and volunteers helped raise $371,670 in 2011 towards the fight against cancer. Relay for Life events are held in over 5,000 communities, 21 countries, and have 4 million walkers in the US alone!

4) The ACS has a wealth of prevention education to limit the number of cancer patients worldwide. And, they also make diagnostic screenings affordable for all. They encourage all to eat right, excercise and stay HEALTHY!

The Relay for Life 2013 season is just beginning for Committees and planning in your community. Why not make a difference this year and spend just ONE day/night....walking for a cure. If we all do a little, we can kiss CANCER GOODBYE!

Walking for a cure until I can't walk anymore....
even then, I'll probably still participate in my wheelchair!

Lisa

Find out more at: www.cancer.org

and

Find a Relay event near you: www.relayforlife.org

Here's to A World with Less Cancer and More Birthdays!

Cancer Survivorship

Did you realize that one in three women and one in two men will be diagnosed with some kind of cancer during their lifetime? There have been great advances in medical treatment, and as a result, more people are being cured of their cancers than ever before. As one of my survivor friends describes: "You are a Survivor the moment you hear the words 'you have cancer' and don't drop down dead on the floor." You are immediately a survivor because you are living with the disease - even if not cured.

There are many support groups for survivors and family members. Online check out:

www.mycancercircle.lotsahelpinghands.com/
or
http://www.cancersupportcommunity.org/

Many"specific" cancer sites (like http://www.lls.org/ and http://ww5.komen.org/) have links to support groups especially for those types of cancer patients.

Check with your health care provider, local hospitals, parish, or American Cancer Society chapter for information on local support groups. To the best of my knowledge, these groups are free and open to blood cancer support group and always walk away feeling happy to have learned something new or that I could be of some sort of help to those just entering their treatment.

Being diagnosed with cancer is a very stressful event! No one should have to go through it alone and there is much to be learned from people who have walked ahead of you in their journey.

For more information and helpful links visit: www.cancerkaleidoscope.com

And CONGRATULATIONS to all you survivors out there!

Praying for a cure,
Lisa

Newly Diagnosed? What you should ask your care team.

Newly Diagnosed?
Top 5 Questions You Should Ask Your Care Team 

from New Connections - the American Cancer Society's b-monthly e-newsletter

Hearing the words “you have cancer” is enough to send any mind spinning. You may have a million questions running through your head, and you may not know where to start when it comes to asking for information about your diagnosis and treatment. However, opening up a dialogue with your care team is the best way to get the answers you need to make informed decisions about your health. The list below will help you ask the right questions as you start your cancer journey.

1. Exactly what kind of cancer do I have? All cancers start with an uncontrolled growth of cells in the body, but different kinds of cancer behave very differently. They may grow at different rates and respond to different treatments – and not just because they affect different parts of the body. There can also be sub-types of breast cancer, for example, that behave differently from other sub-types of breast cancer. Learning your exact diagnosis and the l name of your cancer is the first step in understanding your diagnosis and helping others understand it, too.
2. What stage is my cancer, and what does that mean? Staging is a concise way to describe the size of a particular cancer growth and also how far the cancer may have spread beyond where it started. Cancers can range from stage I to stage IV, with stage I describing the smallest tumors located in only one area of the body and stage IV describing larger growths or cancer that has spread. The stage is very important in making decisions about the best treatment, for example a stage I breast cancer will be treated very differently from a stage IV breast cancer. Knowing the stage also can help your doctor talk to you about how likely you are to respond to treatment and survive the cancer. Ask your doctor to explain what stage cancer you have and why it was staged that way. You may need to have some additional tests or even surgery for doctors to fully stage your cancer.
3. What are my treatment choices? There may be more than one way to treat your cancer. Learning about the effectiveness, potential side effects, and long-term outcomes of different cancer treatments can help you make the best decision about the next steps in your care. Ask what the goal of the treatment is: Are you working to get rid of the cancer, keep it from spreading, or simply relieve some symptoms? Also ask what the long-term effects of potential treatments might be. Some treatments can permanently affect your fertility or other bodily functions or increase your risk of a second cancer in the future.
4. What will life be like during treatment? Knowing what to expect on a day-to-day basis during treatment can help you feel more calm and prepared as you move forward. Ask about the basics, such as where your treatment will take place, how long it will last, and how often you will need to go. Also ask how the treatment might impact your daily activities: Will you still be able to attend work or school? Drive a car? Travel? Get an idea of how the treatment might impact your body, too. Will it be painful or cause physical side effects such as hair loss orfatigue? If you get details in advance, you can make a plan for how you will cope with these factors if and when they happen.
5. How much will it cost? Although money may be the last thing you want to talk about, cancer will likely impact your finances as well as your body. After talking with your doctor about treatment options, talk with your insurance company or the financial office of your hospital or clinic to get a clear idea of how much your care will cost. Ask about the costs of any treatment and about the costs of medicines or any home care services you may need. If you need help paying for your care, ask to talk with a social worker who may be able to guide you to resources to help you.

For links to cancer support websites and other helpful information, please visit: www.cancerkaleidoscope.com