Friday, April 13, 2012

WEGO Health Challenge 13; Ten Things I Would Not Want to Live Without

This is an interesting challenge; of course, we all have things that we really, really like and other things that we really hate, and somehow I think it would be easier for me to list the things that I could live without!!
At any rate, here goes;

Ten Things That I Would Not Want to Live Without!

         1.       My Family, and that includes my mother and father, my sister and brother and their families, my children and their children; that is already over ten!
         2.       Joe, my Prince, or should I say King in Shining Armor.
         3.       My friends, who are always there to lend a hand and support me in any way that they can. They make me laugh and allow me to cry.
        4.       My Sprycel; the drug that keeps me alive every day.     
        5.       My sense of humor; without it, I would be lost.    
        6.       My determination; it is my determination that aids me in my fight against cancer.
        7.       My optimism; this helps to keep me sane, even when my world is falling down around me.    
        8.       My sense of wonder; I am still trying to figure out what I want to be when I grow up!
        9.       My zest for life and living.
       10.   And last, but not least; Dancing!

Of course, there are the other obvious choices such and food, hot water and a toothbrush, but those are just simply too obvious! I would love for you to share your list!!

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Thursday, April 12, 2012

This Morning I Woke Up and Looked in the Mirror....

Me and Ginger, My Other Mother!!
This morning I woke up and looked in the mirror and once again wonder what happened to the girl I once knew. Where did she go? How is it that she left so quickly? Morning time usually means swollen puffy eyes, a very paleface and some old woman looking back. I am not sure just what issue is attributed what, but I know that my Leukemia, my Sprycel and my near crippling side effects from the antibiotic Cipro are all to blame. Yes, I will concede that there is also the matter of two, calendar years to throw into the mix, but come on; I went to sleep looking and feeling like the person I have known my entire life and woke up looking and feeling like someone else.

I suppose that since it has only been a year that I was diagnosed with CML, and only two years since the Cipro poisoning, I still have moments of remembering who I was; and I must admit, I miss that person! I miss her tons, she was the girl that was like the Energizer Bunny; always on the go, full of energy and life and rarely ran out of steam. She was the girl that never got sick and could always just get up and go on a moment’s notice.

She didn’t have to remember to take meds every day and have to check her medical appointments before making plans. It never occurred to her that if she made plans, which she would not be able to follow through. The only thing that she ever worried about was if her children and grandchildren were healthy, happy and safe and how the rest of her immediate family was coping with their misfortunes. She lived every day without worrying about how she would feel the next day and if she had done too much that day, and would feel like crap the next. Basically I suppose, despite some difficult and tragic life experiences, you could say that she was a lucky girl.

Now, I have to realize that I am a lucky girl, just to be alive. I have a form of cancer that was deadly only twelve or thirteen years ago. I have to realize that even though my medication may make me feel crummy, that as long as I keep taking it, that they are getting one step closer to a cure, and one day there may be a chance that I may never have to take it again. Or, they may come up with a new drug that doesn’t affect me the way that this one does and then, I can go back to being that girl that I once knew again. Of course, I know that she will be a different girl, but hopefully, she will be new and improved!

Wednesday, April 11, 2012

Leukemia has Prompted Me to Change My Theme Song; Can You Guess the New One?

For those of you that remember the show Ally McBeal, you will remember that she had a theme song. I LOVED the show's theme song: “Searchin’ My Soul,” by Vonda Shepard. I actually loved everything about that show. Of course, there were many songs that floated around in Ally's head and they changed from time to time, but ever since I was aware that she had one,  I just knew that I had to have one, too.


I think that Ally's "theme song" was "Tell Him, Tell Him That You Love Him!"

It took me awhile to find one that would suit me. Back in 1997 I was married with three kids; two in high school, and a two year old. I ran an in-home daycare with a minimum of eight Lilliputians every day. I managed to keep up with them during the day; and high school football and band, in the evenings.  I thought that I was living the American Dream. Joke was on me and I ended up divorced, shortly after my very, traumatic fortieth birthday. It was then that I came up with my very own theme song: “You Can’t Always Get What You Want,” by the Rolling Stones.

For an entire decade, it remained my theme song. I didn’t “always get what I wanted, BUT, I Always got what I needed,” even though I didn’t even know I was needing anything at all. More often than not, I got what I needed in an unexpected way. Those ten years taught me to trust in God and to turn my “wants” over to HIM; he determined my “needs.” My theme song served me well.

Fast forward twelve years; I have just been diagnosed with leukemia; chronic myelogenous leukemia.  Foreign words, which I do not understand. I am in the hospital, getting poked, probed, chemotherapy, leukapheresis and blood; my mind is reeling and my thoughts are jumbled; somewhere out of the clear blue, I change my theme song. It wasn’t a conscious, “Gee, maybe I should change my theme song today,” It was a WHAM; my theme song has changed.

Anyone guess what it might be? Just for fun, I think I will hold off from telling you and see if anyone can guess what my new theme song is!

Leukemia Prompts My New Theme Song:(re-run)

 I must admit that there were some really, really great guesses trying to figure out my new theme song. I hope that they are SOMEONE’S theme song, because they are too good, not to be!
Today's WEGO Health Challenge is "Finding Your Theme Song" since I have already done this, I felt this post is worth a re-run!

Here is the “Guess List”:
1. I Will Survive    
2. Anything Is Possible      
3. Gold Mine                  
4. Mercy On Me      
5. Don’t Know Why; I LOVE that song!
6. Wishing            
7. Ain’t Going Down!    
8. Ain’t Wastin’ No More Time
9. Ain’t No Mountain High Enough
10. All I Want is to Be Happy
11. Mary, Mary Angel
12. Be Happy
13.Ain’t No Sunshine
14. Ain’t No Way
15. Ain’t Nothing Like the Real Thing
16. Ain’t That Peculiar
17. Ain’t That Just Like a Woman?
18. Ain’t It Funny?
19. Ain’t That a Kick in the Head?
20. Ain’t to Proud to Beg?
21. Ain’t That Tough Enough?
22. Let’s Dance
23. Wake Me Up Before You Go-Go
24. The Dance
25. Live Like I Was Dying; Love that one, too!

As you can probably tell, I did give a pretty big hint; it was the word “Ain’t” and Sandra, you win for the most guesses! It wasn’t  until I gave the second hint, “Ain’t Never,” that Larry actually guessed it in one guess. Good job, Larry!

Now, before I show you my new theme song, with the greatest video EVER,  I just wanted to say thank you for brightening my day! I hope that I have inspired every one of you to find your own theme song. Once you have discovered your “perfect” song, please let me know!

I actually truly believe that your song will just find you; my new song found me during my very first lap around the nurses station, the day after my first round of chemo. It literarily just came right out of my mouth:
“Ain’t Never Gonna Break My Stride” by Matthew Wilder!!I loved the song and then when I saw the video I even loved it MORE!! Loved the costumes and I MUST learn that dance!!

Tuesday, April 10, 2012

Day 19 WEGO Challenge: Dear 16 Year Old Me,

Me, My Mom and Dad

It was 1975 when I was a sixteen year old girl. I was a typical teenager with typical problems; I knew everything and my parents knew nothing. I was most often right, and rarely wrong. I knew how my life was going to play out, and I was invincible. The world was my oyster and I was ready to take it on by storm.
Looking back, I have a few regrets and there are definitely situations that I would now handle differently; if I only knew then what I know now.

 Dear Me,

Don’t be in such a hurry to grow up; life is full of ups and downs, good things and bad, sooner than you can even imagine, your life will be half over and you will marvel at how quickly it has flown by. Take time now to enjoy your freedom, it won’t be long before you have to be the responsible one, the one that everyone looks to for answers. Explore the world and your options while you are young, don’t be afraid to grow up and grown old, just take your time in doing so.

Life can be grand and life can be hard. Your greatest joy in your life will come from your children and their families; love them and prepare them for a life of their own. Hold them in your heart and rejoice when they spread their wings. Your immediate family will sustain and support you throughout your life. Never take them for granted and always be certain to nurture those relationships.

Be prepared for life to take unexpected turns; sometimes in a good way, and sometimes not. Know that you will survive all of them, in one way or another. Live every day to its’ fullest; do what you can while you are able, so that you will have many memories to keep you company when you are not. Never take your life or your health for granted.

Be kind and compassionate, always helping others when possible and do not be afraid to accept help from those that love you, when you need it. Accepting help from others is not a weakness. Be strong, yet be vulnerable. It is alright to cry.

Cherish your days and know you have arrived when you realize that maybe your parents really did know something! Become a responsible and reliable asset to the world but never, ever lose the giggle in your heart. It is alright to always wonder what you want to be when you grow up.

Love, hugs, strength and knowledge from an older, and hopefully wiser self,

Monday, April 9, 2012

Dig Deep and Believe In Yourself!

When life seems to be falling apart all around your, and nothing that you do seems to matter, you must dig deep. You must try to reach into those hidden pockets of strength and grasp them with every ounce of determination that you possess. You will need to bring that strength to surface and allow it to carry you through the rough patches, and on to brighter days.

Sometimes the silver lining is difficult to see, and sometimes we do not see it until the storm passes, but if you continue to believe in yourself, you can be rest assured that there are brighter days ahead. The sun will shine again, and another storm will likely come your way, but weathering the storm and reveling in the sunshine is all part of our journey, along the path that we call life.

Sunday, April 8, 2012

Best Conversation I Had This Week

The best conversation that I had this week was one that I had with a total stranger. This stranger became known to me through my blog. She contacted me regarding chronic myelogenous leukemia and said that she had just been diagnosed.

She was scared and confused and reached out to me, through my blog. She told me that she was mostly frightened because her insurance did not cover her medication. She was being prescribed Sprycel, but did not know how she was going to afford it. I sent her the link to my blog and reassured her that Destination Access would be able to help her.

She contacted me one week later; she let me know that she had read my blog from beginning to end and that she was able to receive her medication because of the information that she had read on my blog. She thanked me and let me know how much my blog had helped her. Since helping others, is why I continue to write my blog, hearing from her brightened my day.

Saturday, April 7, 2012

Cancer; What Friends and Family Want to Know

Finding out that you have cancer is a very shocking and humbling experience. Not everyone will process and deal with their diagnosis in the same way. Some people will want the support of their friends and family, and others may not. No matter how you choose to deal with your cancer, telling your friends and family will be difficult. What we as patients must realize, is that chances are that our friends and family simply do not know how to deal with our illness. They do not know what to do or say, and may often say or do the wrong thing.

For me, I have pretty much always been an open book. People know how I feel and what I think. When telling my friends and family that I had leukemia, I simply just blurted it out; I have leukemia. I really did not want them to feel sorry for me, or to feel as though they could not talk about it. It always makes me feel a bit better when we can just look each other in the eye and say, “That really sucks!”

So, if you are a friend or family member, you should definitely commiserate with them; let them know that you are really sorry that they must endure, and battle their cancer. Let them know that you still love and care for them, and continue treat them exactly the same way that you have always treated them. Don’t start treating them as though they are already dead or dying, but do understand if they need a little more leniency when it comes to making and keeping plans, or being able to keep up with you the way they used to.

Let them know that it is OK to ask about your progress, treatments and prognosis; maybe you could even offer to keep them company on some of those long “doctor” or treatment days. Showing up with a pot of soup and a puzzle when they are going through a rough patch, will be a great diversion; but try not to be upset if they need to save that soup and puzzle for another day. It may be difficult for you to figure out when you should go or stay, but your act of kindness will always be welcomed. Use your best judgment and just try and be a bit more aware of their physical fatigue.

I know that it has always been very difficult for me to “ask” for help in any way shape or form, so chances are that even if you “ask” me, I will decline the offer. I know that this sounds stupid, but showing up with a hot meal, a bag of groceries, or nail polish to do my nails would be a very welcomed gesture, but if you ask me if I need anything, I am certain to say, “Thank you so much for asking, but no, I am fine.”

As time goes on, God willing, the person battling cancer will begin to improve or beat their cancer all together. Some will physically return to “normal”, but for them, it will be a “new” and different normal. This is to be expected. Know that inquiring about their health is still alright, and that if you are ever the one with cancer, that you expect them to show up with that pot of soup, and a brand new board game!

Things to Do, and Not Do:

       1. Send a card in the mail. 
       2.  Send an email or text, just to say hi; sometimes a phone call is just too exhausting.
       3.  Drop off a meal and something “sweet.”
       4. Share a book that you have read.
       5. Share a puzzle or game.
       6. Drop off a bag of “everyday” foods, from the market.
       7. Drive your friend to an appointment or treatment.
       8. Show up and give your friend a mini spa day; in the comfort of their home.
       9. If  they have lost their hair, bring a trendy hat and maybe some fabulous false lashes.
      10.  Bring your sense of humor!
      11.  Anything soft and fluffy is appreciated.
      12.   Don’t be afraid to give them a hug and share a few tears.
      13.   Don’t compare their illness with others.
      14.   Don’t offer medical advice, such as the latest trendy, crazy treatments and diets that you have heard of.
      15.   Continue to be the same person that you have always been and understand that your friend may not be able to be the same person, filling the same roles that they always have in the past. 


#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #whattosaytocancerpatient #hopesanddreams  #cmlspecialist #specialist  #thrivingwithleukemia #livingwithcancer

Friday, April 6, 2012

Thursday, April 5, 2012

Just Why Do I Write About My Leukemia?

Having been presented with this blog every day, for the month of April WEGO Health Challenge, today’s topic is “Why I Blog About My Health.” Prior to being diagnosed with leukemia, the only other blogs that I had written, were regarding dance and the dangers of the antibiotic Cipro. I suppose that the trend for my blogging stems from my passions; first from my love of dance, and then from how devastating and incapacitating the side effects from a class of antibiotics called flouroquinolones can be.

Me, My Daughter, My Very Dear Friend
I would not exactly classify my blogging about chronic myelogenous leukemia a “passion”; I think I would more consider it “therapy” and the desire to help others that are swimming in the same pool, as me. My blog about my health and CML actually began shortly after being diagnosed, a little over a year ago; it was a way for me to keep my friends and family up to date with my treatments and progress, without having to repeat myself over and over again. Going through chemotherapy and leukapheresis is a totally draining experience, physically as well as emotionally. The first few months after being diagnosed were very difficult in many ways, and I was simply too exhausted to actually talk to the many friends and family that care so much for me, so I began my blog; Leukemia Survivor; I AM Dancing My Way Through, as a means to stay connected to them.

The other reason I have continued to blog about my experiences and health is really quite simple; when I was diagnosed with CML I was scared, confused and uneducated. I was frustrated at the lack of information that I could find on the web that was easy to read and understand, so I began to research CML and decided to create a blog that would explain the terminology regarding CML, so that a newly diagnosed person would be able to easily read about their cancer, in a way that they could understand.
I have offered tips and advice of things that I have found important along the way, and have shared my journey in a chronological way so that others that are newly diagnosed can have some sort of a timeline of what they may expect. I know that every person is different, and every case is individually evaluated and treated, but all of our milestones and goals are the same.

Hopefully my blog will be helpful to others with CML and others with devastating diseases, as well. You will find information pertaining to medication assistance to what you should bring to the hospital for a more comfortable stay. You will find rants and words of encouragement, too. I have also found that all of my readers that stop by to encourage me, have been a true inspiration and motivation for me to continue blogging and keep fighting the fight; Life is a gift and I am truly grateful to be able to continue to live it!

Tuesday, April 3, 2012

Do Not Like New Test Results; If I Had a Super Power for One Day, I Would….

Shortly before Christmas 2011, I had a routine, if you can consider routine visits for leukemia to be “routine”, visit with my oncologist. I had been a bit under the weather with the chest crud that was going around, but still kept taking my Sprycel religiously. It seemed that my persistence in taking my Sprycel as prescribed, without ever missing a dose, had paid off.

Shortly after the New Year, my doctor informed me that my Polymerase Chain Reaction test had come back negative! Negative for the BCR-ABL , RNA or DNA, which is the best possible result that a person with chronic myelogenous leukemia can hope for. It was a great way to start the New Year, and he and I were both optimistically surprised, and hoped that the negative PRC would remain. He actually said that I was quite remarkable in that regard and he was so very happy for the negative response. I, of course was excited at the prospect of lowering my Sprycel dose down to 5 days a week from my current 6 day a week regimen. He told me that because of the rapid decrease into “remission” he would not be lowering my dose of Sprycel until I had another negative reading.

Since the response was such a surprise, and not a guarantee, I figured that I would wait three months to share my “happy” results with a second negative report.

Unfortunately that did not happen; my PCR came back positive; 8.9x10-4, from what I can tell, it is twice as high as it was last October (3.99x10-4) as you can imagine, I am not one bit happy about these results. I have to admit that I was totally blindsided; it really did not occur to me, that there was even the remotest possibility that I would not remain in remission; my response to this is; this totally sucks!

So, I am waiting to hear from my doctor as to whether or not I should up my dosage of Sprycel to 6 days a week or not, or if I should be concerned as to whether or not I am becoming resistant to the very drug that is keeping me alive.

Today’s WEGO health blog assignment was to write about a “SuperPower;” what mine might be, and what I might do with it. Well, for me, my super power would have to be the power to heal. To not only “heal” myself, but to heal any and all that suffer from difficult cancers, diseases and conditions. I know that would be a crazy “super” power and that our world would suffer greatly due to over population, but I certainly wish that I could heal all of those who are suffering. If that super power was off limits, then I would choose “energy;” I wish that I could have the energy that I used to have before the Philadelphia chromosome decided to take up residence in my bone marrow!

Monday, April 2, 2012

Quotation Inspirations: “I Do When I Can; I Don’t When I Can’t”, “Stop and Smell the Roses, “and “Happy Go Lucky!”

One most difficult aspects of having Chronic Myelogenous Leukemia is accepting the fact that it is a chronic cancer; in other words, I will never be cured. That is unless my body becomes resistant to the medication that currently is keeping my leukemia at bay, and I undergo a bone marrow transplant successfully.

The second most difficult aspect of having CML, is learning to accept my new “normal”, and living with the side effects that occur from the very drug that is keeping me alive. Prior to having CML, I was a continual and constant mass of motion; I was always on the go and rarely stopped for anything. Many people probably thought that I should stop and smell the roses from time to time, but what they may not have realized, was that I was smelling the roses all along the way. Prior to leukemia, I suppose that my favorite saying was “I can sleep when I am dead!” I always felt that life was so grand and offered so many opportunities that I didn't want to miss out on any more than necessary; I wanted to go, and do, and see what the world had to offer, how I could be a part of it, and how I could contribute to making the world a better place.

Of course, my heart and soul still feels that way, however, my body does not. That sneaky little Philadelphia Chromosome has set up shop in my bone marrow and has seen to it that I stop and smell the roses; frequently. Unfortunately I am often unable to drag my body TO the roses, as often as I would like, but I still smell them when I can. Leukemia has forced me to change my life and to create a new slogan; “I Do When I Can; I Don’t When I Can’t.”  This has been really difficult because I feel as though so much of life is quickly passing me by and I am missing out. My heart and soul say “Go” and my body says “No.”

This has truly changed how I have lived my entire life; I used to be able to make plans and it never entered my mind that I would not be able to keep them. Now, I can wake up in the morning with every intention of making it to dance class in the evening, but by noon, I often must just resign myself to the fact that I will be staying home.

You might be thinking that I should just “push” myself and go dancing, but what most people do not realize is, that if I AM at dance class, I HAVE pushed myself just to get there. Pretty much every day is a push; the more I push through on some days, the more difficult it is to push through on others. It is a vicious cycle that seems to never end. Today I am feeling fever-ish and the beginnings of a sore throat, so typical of my new life; all I want to do is to lie down, but instead, I am writing this blog, doing laundry and getting ready to make dinner. I am also taking sneak peeks of a new dance video!

My motivation for doing what I can, when I can, and giving in to staying home when I can’t, is to try and remain as healthy as I possibly can, continuing to take the medication that is keeping me alive, yet making me feel as though I have chronic flu, long enough for the medical researchers to actually come up with a cure for chronic myelogenous leukemia. Of course, I hope and pray that my body will not have been too damaged by these powerful drugs that are keeping me alive, to return to my pre-cancer, “Happy-Go-Lucky” state.

Health Time Capsule

If I were to create a health time capsule that would not be opened until the year 2112, it would contain actual photographs, documents and literature. Who knows how people will be communicating and what technology will be available 100 years from now; hopefully tangible as it follows my joutneye pieces of paper and photographs will be timeless.

The photographs would be of me, and my family. I would want to put a face, which the person opening my time capsule, could relate to. I would want them to see me, and my inspiration for battling chronic myelogenous leukemia.

I would include an explanation of CML and explain that it is a blood cancer. I would also let them know how fortunate I was that medical technology was able to isolate the cause of my particular type of cancer, and that they were able to “control” my CML with medication; a very expensive medication.

I would include medical documents explaining the cancer, its treatments and its complications. I would also include a personal note, allowing them to see and compare how different our lives probably are. I would also include a printed copy of my blog: as it follows m journey from diagnosis to the present; of course all of this would be wrapped together with an orange ribbon, since orange is the color that represents leukemia.

Hopefully whoever found my time capsule would wonder what it was like to have an illness that could not be cured, because CML would be a cancer of the past. It would be simply treated and cured and no longer be a threat to some one’s life.

Sunday, April 1, 2012

Patients, Please Be Your Own Advocate

Just as my prior post stated the importance or following up, and double checking with your doctors, insurance companies, and anyone else that is related to your health and well-being, you must also be certain to listen and confirm what you know to be true, and what you are being told.

Last week, I had an appointment with my oncologist; I had written it down on my calendar and also had an appointment card stuck on my bulletin board. Two days prior to my appointment, the office called and asked me if I could come in fifteen minutes earlier than my 10:30 appointment; I verified that they meant 10:15 for blood work and 11:15 for the doctor, they confirmed.

One day prior to my appointment I received the confirmation/reminder phone call.
I and answered the phone and the young gal said, “Hello, is this Michele Ramusdsofiauf?” I said, “Michele Rasmussen?” She says, “Yes, Michele Rasmsoidufogh. I was calling to confirm your appointment, tomorrow at 3:00.” I said, “No, my appointment is at 10:15, are you certain that you have the right person?”  She said, “Yes, your appointment is at 3:00.” 

 Now, if I had simply hung up and arrived at my appointment at 3:00, I would have been told to re-schedule; not a fun thing when your doctor is off of Wilshire on the 405. I told her that I had received a phone call the day before, changing the time, and that the time was 10:15; she continued to argue with me and finally said that she was going to check with someone else.

I, for the fifth time said, “Are you SURE that you have the right person? This is Michele Rasmussen.” She finally comes back on the phone and snippily says “Your right your appointment IS at 10:15, there is another “Michele” at 3:00” I said, “Thanks, I thought so,” and hung up the phone.
Moral to the story is; Listen to you; body, heart and soul.

Bricks for the Brave!!