At Cancer Kaleidoscope we strive to cultivate a positive attitude for cancer patients and loved ones through knowledge, support, and the arts; and strive to help find a cure for cancer in our lifetime.
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!"
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!
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? ToCELEBRATE 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/
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:
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!
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:
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!
