Thursday, November 21, 2013

Mental Mind Meld; A Positive Outlook is a Must!

Do you think that our mental health and emotions create challenges that relate to our condition? I know that I do; I truly believe that an optimistic frame of mind helps our mental health, which in turn helps our bodies to heal. We have all heard the old adage; look better, feel better, right? I believe that that is also; very true.

Think about it, if you look in the mirror and see a bedraggled image looking back at you, you are likely to feel like a bucket of crap; but if you run a brush through your hair and across your teeth, wash your face and put on a smile, you are bound to feel better. Better about yourself because it now appears that you actually care about yourself.

If you do not even bother to attempt to “look” better, then you really are telling yourself that you are simply not worth the effort. And if you are not worth the effort then how in the world is your body going to heal?

And shall we talk about a positive attitude? I have always said that there are two types of people; the ones with a great attitude and the ones with a chip on their shoulder; or should I say, a “boulder on their shoulder”! Imagine them both on the side of the road; with a flat tire. The person with a good attitude gets out of their car, shrugs their shoulders, laughs a bit because they have never changed a tire before, and grabs the jack. Before long, they are back on the road with a story to tell. They are now expert tire changers; they know their friends will be impressed!

The person with the bad attitude gets out of their car, slams their fist into the hood, and kicks the tire. They hobble around, grab the jack and rise up their car. They are so angry that when they remove the lug nuts, they carelessly throw them on the ground; one will never be found. Eventually they replace the tire, with the spare and get back into the car; at this point, they realize that in their rage, the result of kicking the tire is a broken foot; now they can add a trip to the emergency room to their troubles.

Of course, the four lug nuts did not hold and the spare tire went rolling down the road; they were back at square one, plus a few; hence, a bad attitude has a way of allowing a “worst case scenario” to jump in and take the reins! Had they simply changed the tire, they could have avoided a broken foot, a screwed up wheel and tire, and a whole lot of frustration and rage.

I truly believe that optimism lowers our blood pressure and that pessimism raises it; this is a good enough reason to have a positive outlook on life. When coupled with quality of life; optimism wins, hands down.
I believe that we must have faith that we will win our battles with whatever condition that we face, and if we allow ourselves to be brought down by our condition instead, then our condition will gladly take over, and pull us into the abyss.

We must remain hopeful, cheerful and brave. We must continue to have a positive attitude and believe that we are winners; for if we do not believe that we are winners, our battles are already lost.

Here is to great mental health and a positive outlook on life!

Wednesday, November 20, 2013

I Still Remember…

Today’s WEGO Health Challenge is to write a post that begins; “I still remember” regarding our illness. This is an easy task for me as there are two moments that I will never forget. The first moment was the phone call from my doctor; he said “Michele, I do not know how to tell you this, but you need to go straight to the emergency room: you have Leukemia. I am so sorry.”

Needless to say, I was dumbfounded; utterly and completely dumbfounded. My very first thought was “What IS Leukemia?” and then, “How do I tell everyone?”  Somewhere between those two thoughts I wondered how long I had to live. I truly believe that shock is a blessing in disguise and the fact that I was able to process all of these thoughts, without becoming hysterical, was truly miraculous.

I still remember where I was standing, what I was wearing and what I was doing; I still remember the sound of my doctor’s voice and the expression on my face. I remember walking to my mother’s bedroom and asking her where my father was; I remember the look on her face when I told her the news. I remember my father driving me to the hospital and walking up to the receptionist’s desk and saying, “I am Michele Rasmussen and Dr. Han is expecting me; I have Leukemia.”

I still remember the sounds and smells of the emergency room and the first time that I laid eyes upon my new oncologist. I still remember everything about my hospital stay, every procedure and moment that I was there. I remember the phone calls and support and the fact that I was finally told that there is a really great chance, that I would still live a long life.

I still remember being scared, sad, mad and confused and I remember finally accepting the fact that I would live the rest of my life with cancer.

And then the most important thing that I still remember is the result of my first negative PCR test; it is the golden ticket, and after two and a half years, I had one in my hand! I do not know whether or not I will be able to hold on to that golden ticket or not, but I do know that I got it once and I have plans, to receive many more.

So for now, I still remember the feeling of pure giddiness that comes along with, a negative PCR!

What do you remember?

Tuesday, November 19, 2013

What Would You Tell a Caregiver?

Having cancer is one thing; being the caregiver is another. Both roles can be extremely difficult and there is no set in stone formula for either person. As a person with cancer, I try really hard not to be too needy and to only ask for help when I really need it. I try not to complain and make it very clear that when I do; I am usually just speaking out loud; not expecting my caregiver to come up with a magical remedy.

That being said, I think the very best caregivers are the ones that do not hover; they continue to live their lives’ and continue to treat you just like they did prior to your diagnosis, with one exception; they are aware of your condition and accept that you may now have limitations, and may not always be able to do everything, like you used to.

In a perfect world, they would know when you really needed help, and when to stand back. Often, it is the smallest, little things that make the biggest difference; like laundry, you did not have to wash, or dinner that you did not have to make. A hot cup of tea and a foot rub is also always appreciated, but sometimes all we really need to get us through the day is a great, big hug.

One of the most important things that a caregiver needs to know, is that it is often really difficult for us, to ask for help, it is difficult for us to accept the fact that our lives’ have drastically changed and we can no longer do the same things, in the same manner, that we used to; and we, as cancer victims hate that, and hate that we become a burden; and we, as the patient must understand that our cancer affects them, too.

I mean let’s face it; how would we feel being the caregiver? Having to watch our loved ones suffer and battle their disease; I often think that their role may even be more difficult than ours. So maybe we should ask ourselves; “What would we do as a caregiver?”

Things a Caregiver May Consider Doing

  1. Offer to run errands; such as picking up prescriptions or groceries.
  2. Offer to take a person to a doctor’s appointment; sometimes the wait is long and this creates a perfect visiting opportunity; quality time is precious.
  3. Offer to walk their dog.
  4. Do a once a month house clean; top to bottom.
  5. Make a pot of soup and freeze in small batches for easy, quick meals.
  6. Offer to help set up recurring bills on automatic payment schedules.
  7. Offer to make phone calls.
  8. Lend an ear; sometimes just listening is just what the doctor ordered.

And remember to take care of yourself, too. A caregivers’ job is not an easy one; it can be exhausting, frustrating and difficult. We know this, and do not expect you to run yourself into the ground; take care of yourself first and know that you are loved and appreciated for your kindness and your care.

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Monday, November 18, 2013

Three Truths and a Lie

Being given a topic to write about can be difficult; how does one write three truths and a lie when you know that people are going to be reading; looking for the lie? I suppose that my first attempt at this will soon tell;

Since being diagnosed with chronic myelogenous leukemia, two and a half years ago, my life really has not changed much at all. I still love the Lord, my husband and my family, and I still live each and every day to the best of my ability. I am still dancing, even though I have not been able to compete during this time; sometimes I miss it, sometimes I do not.

I know that it may be difficult for those of you that do not dance, to understand this, but having cancer is much like dancing; both are really difficult, yet extremely rewarding. Both require a whole lot of work, understanding and patience; yet they both create a stage for personal growth by teaching their students perseverance, determination, compassion and strength. They both are full of struggles and create a constant battle of trying to force your body to do things that it does not wish to do, and both can be extremely frustrating, bringing their students, to their knees.

There have been many times that walking onto a dance floor has led me to tears, and many times that a waltz down the oncology department’s halls has also led me to tears. But there have also been times that I have left the dance floor totally exhilarated, and many times that I have waltzed out of my oncologists office feeling as though I have slayed the dragon!

So, odd as it may sound, dancing is much like having cancer; but I will admit, I would much prefer a tough coaching session than a bone marrow biopsy!

Anyone find the lie?

This video was taken one month prior to my CML diagnosis; and I wondered "why" I was so winded! lol

Saturday, November 16, 2013

My Most Embarrassing Moment; Since Diagnosis

Today's WEGO Health Challenge is to write about the most embarrassing thing that has happened to you, as a result of your illness. This one was easy for me; it happened right after I was diagnosed, in the hospital, during one of the procedures that they were using to lower my extremely high white blood count. Here is the recap:

February 10, 2011 has turned out to be a very, very, long day. The short reprieve was much welcomed but came to an end too quickly. About 5 o’clock in the evening, just in time for another gourmet hospital meal (hospital meals are always tastier cold), in waltzed Nelson. (Can you tell where my mind is?)  He said that he was there to perform the Leukapheresis procedure that Dr. Camacho had ordered. He said that it was a treatment to rapidly lower my white blood cells. My doctor was extremely concerned with the headaches that I had been having and did not want to complicate my leukemia with a stroke. You see, when you have an extreme amount of immature and damaged white blood cells, they can clog up your capillaries and veins, causing them to rupture, hence the risk of a stroke. My eyeballs were already affected and bleeding and I certainly did not want to start drooling, limping and needing to be fed, so I signed all of the necessary consent forms, including the ones that listed death as a possibility, and proceeded to learn all about this machine that I could.

The poor guy that had to squeeze me into the end of his day was stuck with my questions and my body’s strange responses to the treatment for 5 plus hours. He explained that the large machine was something like a dialysis machine. He was going to remove the entire volume of my blood three and a half to four times and run it through his machine removing as many white blood cells as possible.

He attached two main tubes to the catheter in my neck and then proceeded to thread them through his machine. One tube was to remove the blood, the other to return it into my body. My favorite part of the machine is a barrel looking thing where the tube wraps around and around. It is actually a heater that heats the blood before returning it to the body.

There is a window in the machine where he monitors the color of my blood. There is a chart with a graduation of color on it. It is his job to maintain the correct color, kind of a rusty/corral. He watches through a window where there is a barrel that spins the blood so fast that a strobe light is needed to get an accurate reading. Centrifugal force is used to separate the white cells from the blood.  His goal is to remove white cells; however platelets and red blood cells also sneak into the mixture so adjusting the speed can be tricky. The removed fluid goes into a bag that is hung above the machine.

While all of this technical stuff is going on, my vitals are constantly being monitored. Of course, because I am SO special, my blood pressure is extremely low 72/34 ish, and my temperature starts to climb. The process is making me nauseous and they have to keep slowing it down in order to allow my body to adjust. The RN explains that giving calcium through my IV helps with the nausea. He feels that they will need more for tomorrow’s treatment. They actually removed approximately 1075 ml of fluid containing mostly white blood cells. The whole process is exhausting.

The technician explained to me that it was normal for the white count to go down right after treatment but not to be disappointed if it went back up a bit the next morning. He said that this was the normal trend. Before the procedure my white blood cell count was 372,100. After the treatment it lowered to 273,100. The goal was to continue this process until the white cells were below 100,000. I was quite impressed that they had almost removed 100,000 of those little suckers and I pleaded with my body to remain at the low level.

The absolute worst part of this whole procedure was that I was unable to get out of bed. And the worst part of that was the fact that they continued to drip IV fluids into my body at a steady and continuous pace. Now if I had been a guy, this wouldn’t be quite the issue that it was for me. Yes, you guessed it….the dreaded Bed Pan.

Two things that I learned about the bed pan were; first and foremost call for it long before you REALLY need it and second hang on to it once you get it. I would like to tell you that I had a few tips on how to use it, but to be perfectly honest with you I still don’t know which end is the front and which end is the back. What I can tell you is that regardless of the reason you find yourself faced with the prospect of using the bed pan or wetting the bed, you had better bring your sense of humor along. That oval shaped, plastic thing is very uncooperative! When you attempt to sit upon it, it weebles and wobbles. It even has a tricky way of shooting right out from under you. They actually call it a "Slipper Bed Pan". If you are lucky the hospital staff will leave you alone, if you are not you can count on getting stage fright. The only things that I could really do were laugh and apologize over and over to Joe, saying, “I am so sorry, you weren’t supposed to have to do this until I was 80!” Fortunately we had a good laugh and have survived the day, thus far.

Friday, November 15, 2013

Favorite Fridays: Who Do You Follow?

Today’s WEGO Health Challenge asked “who” our favorite people on social media are. I immediately assumed that they were speaking of someone that the general public finds newsworthy, and I wasn't sure that I was up to this challenge.

You see, I do not really buy into that whole Twitter/Hash tag thing and I really could care less about “So and So’s” latest and greatest diet, or manicure, but then I realized that I DO “follow” my family and closest friends; and I have also made many, internet friends that have chronic myelogenous leukemia, just like me! Pat Elliot, Greg Stephens and Shara Tietz are also great Health Activists and friends.

I also follow the WEGO Health site as they have a huge community of health advocates and I love their information and support. I am sure that there really are some great people to “follow” and I may be missing the train, but for now, I only have so much time in one day, and just keeping up with my granddaughter’s eighth birthday photo shoot and my grandson’s new love of Texas Hold ‘Em is about all I have time for!

The sites that I have found most informative and supportive are on Facebook, although there is a great group of CML patients in a google email group, too. You may wish to check them out!

  2. WEGO Health
  3. Pat Elliott
  4. National CML Society
  5. CML Sisters
  6. CML Survivors
  7. CML Survivors and Caregivers Closed Group

Thursday, November 14, 2013

Do You Tell People About Your Leukemia?

Since I am fortunate enough not to have to go to work every day, I do not have to be concerned whether or not my cancer will affect my job, or my co-workers’ opinions, as to whether or not my cancer might affect my performance, while at work.

I do however, run into a great many groups of people, with whom I have conversations, while I am dancing. This coupled with the fact that we recently relocated from California, to the very friendly state of Idaho, has put me in the position of wondering; when is the right time to tell people that I have leukemia?

For those of you that know me personally; you know that I am a pretty darn open book. Things fly out of my mouth quickly, sometimes without even thinking. Part of this is due to my openness, and part is do to the fact that if I do not speak what is on my mind, at that precise moment, it may be forever lost in the confines of what used to be, a very sharp brain! I know that some of this is age, but I prefer to blame most of it on the chemo! I went quickly from "some-timers" to "most-timers" and it totally sucks!

Anyway, back to the topic of "when" you tell someone that you have cancer:

I really cannot answer that question, and I am sure that many have found out about my CML in a rather abrupt and shocking manner, like asking the simple question; “Hey, how are you? I haven't seen you in ages,” and my response being; “Yeah, damn Leukemia got the best of me for the past few weeks.” Of course I am not looking for sympathy, I am simply stating the fact that I have cancer; in a less than tactful manner; sorry 'bout that! So needless to say, telling someone about my cancer, may not necessarily be a mapped out plan, but one more of spontaneity.I suppose that I feel if I deliver the news in a haphazard manner, then the truth will not seem as dire.

I hope that my openness will allow people to realize that despite the fact that I do have leukemia, I am still the same person that I always was. I still have the same wishes, hopes and dreams despite being a little more challenged, while accomplishing them. I used to be able to get up and go at the drop of a hat, but now I have to make plans, and hope that I feel well enough to keep them.

I hope that by people knowing that I have leukemia they will feel comfortable asking me questions and realize that cancer should not be a big taboo subject; it is something that can happen to anyone, at any time. Being open about my cancer has allowed me to help others; it also allows people to see that just because a person has cancer, it does not necessarily mean that they are dying; instead, they are living, to the best of their ability, with cancer. 

Wednesday, November 13, 2013

Evolution; How Being a Patient Has Changed Me

Two years and nine months ago, I was told that I had Leukemia; at that point, I knew very little about Leukemia. I knew that it had something to do with my blood and my bone marrow. I remember wondering just how long I had to live.

Once I was in the hospital emergency room, I urged the nurses there, to print information about leukemia, from the internet, for me; while I waited for the hematological oncologist to show up. What I learned from my less than extensive reading was that there were many different types of leukemia, and shortly, I would know what type I had.

As I waited, I pondered my situation; typically, I was never sick, now I had cancer. What was I going to do? How was my life going to change? How was this going to affect my family? How long would I live, and what would I do with the remainder of my life? How would I really want to spend the rest of my life? Is there a cure? Would I live through the cure? Have I accomplished what I was put on this earth to do? Have I made an impact? Could I have done more? So many questions were whirling around in my brain, that I truly believe that I was not actually grasping the seriousness of my condition.

Patti; MY Wonder Woman and BEST friend!
The following day, a bone marrow biopsy was performed and I had an internal jugular vein, leukopheresis catheter placed into my neck; neither of these procedures was pleasant, and the severity of my situation began to sink in; quickly! I began to transform from Super Woman to Heidi; I went from being invincible, to sickly. This was not an easy pill to swallow…..I was not accustomed to being sick.

I knew in my heart of hearts that I must now transform myself into Wonder Woman; not the noun meaning that I was to become someone to admire, but the verb; I knew that I must transform myself into a woman that was going to have to question, or wonder about, my health and treatments; for the rest of my life.
I had evolved from a person that took good health for granted, into a person that must take good health seriously, and into their own hands. I now must search out the best possible treatment and adhere diligently to it. I must become educated in my type of cancer, and stay on top of the continued research being done; I also feel as though I needed to share my experiences with others.

I went from taking life for granted to knowing just how precious life really is. None of us know how long we will survive on this planet, but I definitely take time to appreciate every day, and to make each day count. I would not say that my values have changed, yet I value life so much more. As far as goals are concerned, I suppose that my goal to help others has been illuminated; it has also been channeled. I now find myself being an advocate of health, leukemia and even medication dangers.

I will continue to educate myself and others in the hopes of leading a more genuine, fulfilled and steadfast life.

How have you evolved?

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Tuesday, November 12, 2013

Three Songs That Lift My Spirits!

Typically I am an upbeat person; it takes a lot to put me in a funk, but when it does happen, music really does help to pull me out of the hole I am in. I know that for many, inspirational gospel songs, with meaningful, uplifting lyrics do the trick, but for me, I like upbeat, “make me feel happy” songs!

Typically there is no rhyme nor reason as to what gets my goat on a particular day, but the song “Ain’t Never Gonna’ Break My Stride” along with the awesome video (just check out the backup dancers)  ALWAYS makes me smile, and reminds me to keep on going; ain’t nothing, not even CML, is going to keep me down!

Another make me feel happy song is “Knee Deep”.  I LOVE the Caribbean, the ocean, the sand and the blue, blue water; not to mention the great acoustic guitar that simply makes me feel like dancing! Finding the Key to Paradise, is often as simple as being knee deep in the water somewhere…..

And since this challenge limits us to three songs, my third pick of the day would have to be “Bless the Broken Road”, it is the song that I walked down the aisle to, when my husband and I got married; many of us have walked down broken roads, taken the wrong path or the long way to get where we are today.

I do not doubt that I will continue to veer to the left or the right at times, but as long as God is blessing my broken road, I will always find my way.

Monday, November 11, 2013

Alternative Medicine; Is it for You?

When I was first diagnosed with Leukemia I received an influx of advice; some good, some not. I know that each and every person that offers advice simply wants to help; they wanted to share their knowledge and beliefs, in an effort to heal me. I believe that it is human nature that leads us to this behavior; we want to help, we want to fix what is wrong and most importantly, we hope to cure the person that we care about.

Sometimes these efforts are from personal experience, but more often than not, the advice comes from what a person has heard or read. I am certain that they are all well intended but I believe that each and every one of us must choose our own path; when you are faced with cancer, you most likely will choose the path that has the most documented success.

Medical professionals are constantly researching and learning how to treat illnesses, such as cancer; and to some degree, we are all guinea pigs. While I do not doubt that there is often harm associated with a cure, sometimes it is our only option.

For now, my type of leukemia IS experimental; it has only been treated for a little more than a decade; there is still so much that is unknown. For example, we do not know what the “long term” effect, the medication that currently keeps us alive, will have on our bodies; say ten MORE years down the road. I choose to take that risk and live. I hope that somewhere down the road, there will be an alternative. Maybe even a cure.
As far as alternative medicine is concerned, I truly believe that treating what we can with herbs and oils and other such things is totally feasible. The first thing that I grab when my chest is congested is eucalyptus oil; I use it in the steam shower and it opens my chest beautifully. Peppermint is great for mild nausea, chamomile is soothing and melatonin is a terrific sleep aid.

I also believe that yoga helps my overall well-being and by “feeling” good, I believe that my body is better suited to fight cancer. I know that a massage makes me feel like a million bucks and that when I take time to meditate; it is easier for me to focus. I LOVE my chiropractor and trust him explicitly. I try my best NOT to ingest any unnecessary drugs, eat a healthy diet and exercise. All of these things that have been pounded into our heads, our entire lives! So, I guess that this form of alternative medicine is works for me.

I continue to research practically every type of medical condition that is brought to my attention, and attempt to use my best judgment when dealing with my own health. I understand when people ask me whether or not I have tried some hair-brained treatment, slept in a vinegar wrap or spend three hours a day hanging upside down, I know that it is their way of “helping”; most often I simply smile and reply, “No, have not tried that one; yet!” But please excuse me if I respond by saying, “You let me know how that works out for you, when you have cancer!”

I know that that may seem harsh, but what each and every person that has a disease that they are fighting on a daily basis really wants, is your support on whichever path that you have chosen to take.
The only real alternative is; Do we live? Or Do we die?

I choose to LIVE!

Saturday, November 9, 2013

Just Admit It!

Today’s WEGO blog challenge is to write about something “taboo”; something that people do, yet don’t want to talk about. This was not an easy task; of course the first thing that comes to mind are bodily functions, but who wants to write about them? So instead, I thought about things that annoy me and this is my number one top annoyance; screening cell phone calls!

In the “olden days” when one made a phone call, the receiver simply answered it. If they did NOT answer, then you could assume that they were NOT home. There was no way in which to secretly discover “who” was calling; you simply had to take your chances and answer the phone. The caller never had to wonder whether or not the receiver made the decision to answer the phone based upon “who” was calling.

With today’s technology, this has all changed. With the exception of a dire emergency or even worse yet; a lost cell phone, you can pretty much count on the fact that whomever you are trying to reach has their cell phone attached to their body. Most people ALWAYS have their phone within reach, if not on their person. Cell phones have become a second skin to many; people’s entire lives revolving around, and on their phones. Oddly enough, communication often takes a backseat.

The taboo that no one wants to talk about is the fact that now when someone calls, and the phone is NOT answered, you can easily deduce that the person that you are calling simply does not wish to talk to you. You know that they have their phone, you know they have looked at it to see who was calling and you know that they have made the decision not to answer. You have been ignored and you can wait; wait until they are good and ready to talk to you. You or what you have to say is simply not that important.

Yes, you can come to their defense and say that maybe they were busy, or that it was just utterly impossible to answer their phone, at that precise moment, but you and I both know that if they had REALLY wanted to talk to you, there would be no stopping them. I have had plenty of lunches, dinners and conversations interrupted by people answering their cell phones; I became the one that no longer was important. And believe me; I have observed this behavior for years. There is neither rhyme nor reason; sometimes they answer and sometimes they do not. It does not appear that it is content based, it is simply person based.

There never seems to be a real “emergency” at hand when these calls are answered, it is simply someone that they wish to converse with; I find this quite rude and do not maintain friendships of this nature.  I also know that when I call someone and they do not answer, unless there is a legitimate reason, then they probably do not wish to speak to me; luckily, this does not happen often!

I suppose that we all have the option to just delete these offenders from our phones, but other times they are people that remain in your life, whether you choose them or not.

Since moving to the mountains a year and a half ago, I have found freedom; freedom from the cell phone; freedom from having to be available 24/7. I have the freedom from having to be “plugged in” at all times. It took some getting used to but I now realize just how much of my life, my phone controlled. I have to admit that I get excited, once again, when my home phone rings; it is almost always a surprise!

I think that we all need to remember our P’s and Q’s and start consciously applying them to cell phone usage.

The greatest taboo of all is that cell phones, iPods, etc. have become people’s new best friend; we have all been replaced. It is a shame that people would rather focus all of their time and attention on an electronic device than a living, breathing human being.

The next time you are in a group setting look around; what do you see?

Friday, November 8, 2013

My Favorite Three Quotes

“Do not let your hearts be troubled. Trust in God; Trust also in me.” Jesus Christ

I have found this quote to be comforting whenever I find myself worrying about the future; it stops me in my tracks, and allows me to realize that whatever God’s plan for me is, I am ready and willing to fulfill it. He is in control.

“Life Is Not About Waiting for the Storm to Pass; It is About Learning to Dance in the Rain!” unknown

As a dancer, this quote has a special meaning to me, but as a person fighting cancer on a daily basis, it means even more. This quote truly represent the way I live my life; for me, each and every day has a little bit of rain, in one form or another; if I waited for these raindrops to pass, I would never get out of bed.
I would miss out on all of the “living” that I intend to do; I have learned to dance in the rain, and I realize that it is actually not only fun, but quite revitalizing, as well!

Dance in the rain, stomp in the puddles and enjoy every moment!

“Life is What Happens While You Are Busy Making Other Plans.” John Lennon

How true is that? It seems as though every time that I think that I am in control or have a “plan” something jumps in and throws me a monkey wrench! I am grateful that I am an optimistic person that is able to roll with the punches, take each situation as it come and am flexible enough to change paths, without batting an eye.

Some of my best memories in life are events that happened when and how they were least expected! Stop making plans and start living life!

Quotes are something that all of us use in our daily lives; there are so many great ones that it is difficult to choose only three. I would love to hear your favorite quote; please share!

Thursday, November 7, 2013

Was Sprycel Keeping My Peripheral Neuropathy at Bay?

In April of 2010, a little more than three and a half years ago, I suffered extreme side effects from an antibiotic called Cipro, also known as Ciproflaxin. This antibiotic is in a class of antibiotics called floroquinolones; Levaquinn and Avelox are also in this class of antibiotic. Apparently in 2010 there were over 20 million prescriptions written for Cipro, and its’ popularity has increased.

Cipro was designed as a powerful, last drug of choice, antibiotic to be used in extreme bacterial infections that did not respond to prior treatment; it has become a first choice antibiotic for many, many physicians and dentists, despite its’ Black Box Warning status.

So, what’s the big deal? It’s an antibiotic, right? All antibiotics come with some risk and side effects, right? If you’re sick, you need an antibiotic, right? While all of these answers may be “yes” I will tell you what three doses of this antibiotic have done to me; they have apparently caused a permanent, peripheral neuropathy; with my feet being the hardest hit.

I suppose that I probably take in excess of 10,000 steps each and every day; imagine excruciating pain every time that you put weight on your foot; that is 10,000 jolts a day. And imagine that after you experience the jolt, your feet just throb in between each jolt. That is what Cipro did to my feet. I had/have many other issues as well, but my feet are my greatest challenge.

Fast forward eleven months from my second floxing; I was diagnosed with chronic myelogenous leukemia. During my initial treatment I received a chemotherapy drug called Cytarabine. Within days of receiving these chemo treatments, my foot pain began to subside; eventually it became almost non-existent. I began to be able to walk normally and I began to be able to use and bend my toes, my knees and my hips without pain. I was ecstatic! I had found a golden lining to having leukemia; my daily pain was much improved; I began to move, and dance like my old self. To me it was miraculous; to the doctors, they simply shrugged and said that they often heard that people’s RA and other peripheral neuropathy improved after chemotherapy.

I cannot tell you how happy and excited I have been without this daily pain. I was released from the hospital and began a daily medication called Sprycel. Sprycel is a drug used to treat CML. Apparently it also has kept my peripheral neuropathy at bay, because for two and a half years, my pain level has remained stable.

That is until I developed pleural effusion, a side effect of Sprycel, and had to stop my treatment for three weeks until the PE resolved. During this time, the pain in my feet has returned. It began slowly but has continued to progress; it is depressing and I swear I would go in and have a round of chemo if I knew that it would help. I am hoping and praying that by resuming my Sprycel treatment the pain will begin to subside once more, but I also wonder if the Sprycel was strong enough to hold the peripheral neuropathy at bay, but not strong enough to stop it. 

Something to ask at my next doctor's appointment....

Wednesday, November 6, 2013

Cancer Sucks: A Tribute to Joan B. Goode

On Halloween 2013, Joan B. Goode’s life was stolen from her, by pancreatic cancer. She was a sister, she was a daughter and she was a friend. She was the first person that I met when I moved back to California, after meeting Joe. I felt as though I already knew her, as she and Joe danced together on a regular basis; he would always call me on his way home from dancing, and talk about all of the dances that he and Joan, had danced. So when we finally met face to face, it was as if she were an old friend.

I watched her dance in awe, and hoped that when I grew up, I could dance like her! She was always encouraging and ever supportive; she gave me tips and shared her secret thoughts. Looking back, I suppose that the only dream she did not fulfill, was finding that special someone to share her life with. This however did not stop her from living her life to the fullest. When you watch the slideshow put together by Cliff, you will see just how much Joan enjoyed her life; her smile is infectious and her bright light will shine on.

Reflecting on her life in this slideshow made me feel better; it shows just how much fun she had and how many different things that she packed into her life. She wasn’t a bump on a log and I guess that God felt as though she has fulfilled her purpose here on this earth, and called her home. Many believe that we should not feel sad, as her life is just now beginning……I hope to have as many “happy” faces in my slideshow when I am gone; she is an inspiration!

To those of you that knew Joan, I am certain that we can all agree, she was a unique human being, full of life. I still remember her supportive words when I was diagnosed with Leukemia, she said “All you can do is take each day as it comes and if you ever need anything, remember that I am always here.”
It is still so hard to believe that she was dancing in Fresno in May, 2013 and gone by Halloween; let this be a reminder to all:

Live life to the fullest; do not wait for tomorrow, because none of us know just how many tomorrows that we may have.

For all of her dance family, please enjoy this special tribute to Joan B. Goode and be sure to dance a dance for her!

Saturday, November 2, 2013

Facebook; Is it the Be All; End All?

A few days ago, I saw a friend of mine at a monthly dance that we typically attend. She said that she was glad to see me and that she wondered where I had been. I told her that we had been out of town for the past three weeks, as my father had recently passed away. She said that she had had no idea, and offered her condolences.

It was the next thing that came out of her mouth that amused me, and prompted me to write this post. She simply stated, in a matter of fact manner, “I guess that I missed it on Facebook.”  I cracked up and she looked at me as though I were from the moon; I simply stated, in a matter of fact manner, “I guess that I neglected to post it on Facebook!”

While I truly believe that Facebook is a terrific way to communicate and share our lives, sometimes, some things may either be just too difficult, or too personal to share. I understand that there are/were a great many people that I could have reached on Facebook, that would have liked to have known of my father’s death, but somehow I just did not feel as though I could do his passing justice, in a Facebook post.

Our society has changed so drastically with the explosion of the internet that we often post things so quickly, on Facebook, that we do not consider the consequences. When I was first diagnosed with Leukemia, I called my oldest child first; my second next; and then I planned to call my youngest, when he got home from school.

My daughter, fully entrenched in the ways of the internet, quickly put out a post for prayers and support, for me; it was only a few minutes later that she realized what she had done and quickly removed the post. It was already too late; the news had gone viral, and my youngest, found out that his mother had Leukemia; on Facebook!

Of course we laugh about it now, and I often wonder how I would ever keep up with all of the trials and triumphs of my children and grandchildren, if it weren't for Facebook; but it can sometimes be alarming when you see an x-ray with a basketball needle in you grandson’s gut, or hear about your granddaughter’s broken arm; on Facebook. These “events” have prompted our family to become MUCH better at informing our immediate family of mishaps; before hitting the “post” button; and I find that a good thing!

So while Facebook allows us to share our lives with friends and family, near and far, and to connect with strangers with common interests, illnesses and ideas; it may or may not be the first and foremost place, and manner, in which to share pertinent information. Before hitting “post” you may wish to consider the subject of your information, the manner in which you are delivering it, and how it may, or may not, affect any one that may receive it.

In my opinion, Facebook is not the Be All; End All, but it definitely has its’ place on this planet! With that being said, I may soon be ready to share my father’s passing; on Facebook.

Bricks for the Brave!!