Sunday, July 31, 2011

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!

Friday, July 29, 2011

My Sprycel (Dasatinib) Support; Yes, I am a Dork!

Today the doorbell unexpectedly rang. My obvious annoyed demeanor quickly changed when I saw that it was the mailman; and that he had a package for me. I am such a dork that I still get excited when I get a package in the mail. This particular package was rectangular shaped, with a return address that I did not recognize. Totally stumped, I dug right in; not knowing what I would find. I know that not many people would be very excited about what was in the box, but I was thrilled.

The rectangular box was a wicked cool, Resource Kit, from My Sprycel Support. Despite the fact that I wish I had received this surprise box, five months ago, when I first started taking Sprycel, I was nonetheless excited and appreciative.  The box is perfectly designed; it is full of Informative Resources and Support, an opportunity to sign up for their $100 a month Co-pay Assistance Program (for those of you lucky enough to have insurance that pays for your meds), Safety Information, Drug Interactions, a list of Possible Side Effects, a Record Keeping Journal, an Informative Booklet all about Chronic Myelogenous Leukemia and most important of all, hiding in the box, was a Sunday through Saturday pill box; talk about hitting the Jackpot!

I know that this does not seem very exciting to you, but in my small world, it was almost as good as Christmas morning; yup an official Dork! So, my suggestion to all of you out there, that are living with CML, no matter how long your battle has been going on, is to go to Sprycel Support and sign up; and then you can get a very cool package in the mail, too.

Thursday, July 28, 2011

Back Home and Still the Black Panty Girl!

Last week was our first week back home, and our first week teaching Country 2 Step at the Borderline, in Thousand Oaks, Ca. While it is good to get away from it all, it is always good to get back home, too. When I am here, I miss my Boise dance family, and when I am there, I miss my California dance family.

If you are not a dancer, I encourage you to seek out your local dancing community and put a big “dance” toe, on a dance floor. You can actually learn online with our online dance instruction. Dancing not only brings joy to your soul, it is great exercise for the mind and body. They say that dancing helps to prevent Alzheimer’s, and for those of us with “chemo brain” that is a great benefit! In addition to all of the great “body” benefits, you will also meet a wonderful group of people. Dancing allows you to go anywhere, find the local dancers’ hang out, and fit right in. Your intimate circle will expand and your body, mind and soul will thrive.

Anyway, after finding out that my lovely, black panties made an appearance for six dances during my last competition, I guess that my bum decided to make an appearance at our class last week, as well. Yes, I lived through one of my most horrifying nightmares. I walked through an entire bar and stood in the middle of a large group of dancers, with my skirt tucked into my waistband; my whole rear end facing the crowd! Lovely, right?

This occurred as a result of my mad dash to the bathroom, during class. Since I am not one of those girls that “check” everything in the mirror before leaving the restroom, I do the usual; wash my hands and fly out the door. Lately I fly out the door even more quickly because of the consistently falling out, bad hair; I just don’t want to look in the mirror. So, I fly in and then I fly out; right back onto the dance floor, in closed dance position. Yes, in the middle of the floor with everyone watching.

Joe, who talks, or should I say teaches a lot, has me standing there for several minutes, bum sticking out for all to see; I haven’t a clue. Suddenly, I feel someone’s hand on my shoulder, I look around and Vicki whispers, “You’re skirt is up, you’re shorts are showing.” She graciously pulls my skirt out of my waistband and I turn around and say, “Well, at least I have ONE friend, Thank YOU, Vicki!!”

Thank God I was wearing actual biker type shorts and not a thong; that would have been frightening!! Once my skirt was back down where it belonged, we resumed class; just leave it to my panties; once more, trying to become the center of attention.

There are two morals to this story. One, ALWAYS take the time to check in the mirror. Two, be a friend and tell the person in question; save them from themselves’; whether it be they are dragging toilet paper behind them, their skirt is in their waist band, they have lipstick or food, on or in their teeth, their zipper is down or there are boogers in their nose, do them a favor; be a friend and tell them!! Please feel free to use my daughter’s saying for the boogers in the nose, “You have bats in the cave.”

Black panties and shorts under skirts are now, officially retired!

Tuesday, July 26, 2011

Polymerase Chain Reaction Test, aka PCR; Results of My Second One

Two months ago I had my very first Polymerase Chain Reaction test; this test is commonly known by CMLer’s as a PCR test. It is used to monitor a person’s response to treatment. My first PCR test was done two months ago; it was actually my baseline test as I had not previously had one. The results for that test were 5.9 x 10-2, while I am still trying to grasp exactly what that means; I understand that the goal for every test is to see a reduction of the Bcr-Abl RNA or DNA in the blood and marrow.

So, my test results are in and the IS a reduction. I haven’t seen my doctor, yet, but he did send me an email and stated that it was 10 fold lower than the last one at 4.47 X10E-3. Right now I am wishing that I had paid more attention in math class and that I could really figure out exactly how one mathematical sentence related to another, but for now I will simply focus on the “10 fold lower,”  and wonder if that is a “typical” response, a “good” response” or an “over the top” response.

I suppose I shall just have to wait until my next appointment to ask him. My next appointment in near the end of August and he will be performing another bone marrow biopsy; under general anesthesia.

Monday, July 25, 2011

Chronic Myelogenous Leukemia; Finding Information

When I was first diagnosed with “leukemia”, I had no idea exactly what it was. I knew that it was a blood cancer, that some people had bone marrow transplants and that often people died. I was alone in the emergency room for almost four hours, before Joe was able to get there; I had an eternity of time to think; a ton of unanswered questions, and no information to read. I asked the nurses repeatedly for information; finally one of them printed a very generic explanation of leukemia, off of the internet. They themselves knew very little about it; or at least that was their pretense.

Once I finally got to my room, late that night, I was able to use my laptop and start research of my own. Once again, what I found was very generic, vanilla information; not what I was looking for. It is my opinion that if someone is diagnosed with a serious disease or condition, they should be handed booklets or pamphlets answering all of the questions that a newly diagnosed patient has.

Having these things at your disposal would help to alleviate the fear of the unknown. Even if the information was unfavorable or scary, knowing what the possibilities are, would help to ease your mind.

Fast forward four months. I have seen two doctors and am currently seeking medical advice from a third. Can you guess why? It is because I was unable to get my questions answered. Fortunately my third doctor was able to answer all of my questions and seemed to agree with my own theories regarding my body and treatment. Thank God for him and for my persistence!

As I am leaving his office, and going down the hallway to make my next appointment, all along the wall are dozens of booklets. Low and behold, the Leukemia & Lymphoma Society and the America Cancer Society has put together many wonderful informational booklets. The booklets that I grabbed were:

1.          1. Chronic Myelogenous Leukemia
2.          2.  Acute Lymphoblastic Leukemia
3.          3. The CML Guide
4.          4.  After Diagnosis
5.          5. Sexuality and Cancer
6.          6. Understanding Drug Therapy and Managing Side Effects

I was almost giddy when I saw them, yet I wondered why the hospital, or neither of my previous doctors, had not made these booklets available to me. If I had been given these booklets in the hospital, my mind would have been eased, not to mention the minds of my friends and family. I imagine that all of my nurses, that I questioned incessantly, would also have been relieved if I had had this informational reading material. Look how easily they could have shut me up! 

So tell me; why in the world, when there is such great informational material available, wouldn’t doctors and hospitals make it available to their patients? Is it just because treating patients has become so conventional, that they are just treating the condition or disease, or is it because they don’t wish to incur the cost, to make these booklets available? Or is it just plain ignorance or insensitivity?

I give kudos to the Leukemia & Lymphoma Society and the America Cancer Society for gathering this information and putting it together, so thoughtfully and concisely. Now if we could only get the medical institutions to distribute this information to the patients, then all of their efforts could be recognized and appreciated. 

‘Nuff said!

Time to take my son to lunch and a movie; thanks to Groupon it will only cost $15. Two Quiznos subs for $6, and two 3D movie tickets for $9. Harry Potter, her we come!! If you haven't already signed up for Grouponjust click and give it a try, you won't be disappointed!

Sunday, July 24, 2011

Living with Cancer is Like a Grab Bag

Before I had leukemia, I could pretty much count on every day being, about the same. By “about the same” I mean that regardless of my previous day’s activities, or night’s sleep, or what was in store for me that day, I always just “got it done.” I had the luxury of living my life, day by day, with little regard to limitations. I didn't wonder if I would feel good enough, or have enough energy to accomplish my daily wish list. I could “plan” a vacation or tackle a project.

These days I find myself constantly challenged. My life has turned into a grab bag; I never know how I am going to feel when I get up, or how my day will progress. I don’t how the weather, a plane ride or a trip to the market is going to affect me. I am reluctant, yet try to remain optimistic, when planning a weekend trip to visit my family, signing up for a dance event or planning any long distant trip. I believe that the key word here is “plan.” Seems as though anytime I make a “plan”, all am I really doing is making some one upstairs, laugh and say, “So there you go; making another plan! When you will learn, that I am the one in control?” Problem with that is; either I am deaf or “He” does not speak loudly enough!

I have become a bit fearful of being “too far” from home; and my doctor. Could that be because I ended up in the hospital in Palm Springs on a visit to my folks? I worry about going to street fairs in the summertime; because of the heat. I won’t go to ball games or the beach. An indoor movie still, sometimes makes the cut; but even then I worry about the headaches from the big screen and loud volume. Light Bulb moment; earplugs!!

All I can say is, “Thank God for Dancing!” While currently, my dancing activities have definitely declined; they are still a part of my life. My weekly goal is to feel good enough to practice for one hour on Wednesday’s, and then help teach two 45 minute classes and still have enough energy to dance a few dances during the following hour. Some weeks I dance many dances, others I do not even get to go at all. Dancing is the one activity that is reminiscent of my “old life” and I am reluctant to allow the cancer to steal it away, as it has stolen my blood cells, my energy and my immune system. I am hopeful that in time, I will regain the upper hand.

When I am actually “dancing”, I do not notice the fatigue or fever-ish feeling. It is after I stop that reality sets in. Yesterday, we had a two hour practice, I “felt” relatively good, yet I was a bit “wobbily”. Near the end of our practice, Joe asked me if I was OK, I asked why and he said that I looked pale.

Yes, the never ending roller-coaster of living with cancer; it’s just a plain old grab bag. You never know how you are going to re-act or feel; from moment to moment or day to day.

Saturday, July 23, 2011

Sprycel (Dasatinib) at Night Seems to Help Alleviate the Afternoon Yuckies!

And now I think I am Batwoman!

Maybe it is a coincidence, or maybe we are onto something here. Five days ago I started taking my Sprycel at night, before I went to bed, instead of in the morning. I began taking Sprycel in the morning from the very beginning. I am not really sure why, but I suppose it was because it just seemed like the “natural” thing to do. Get up in the morning, brush my teeth, make a cup of tea and a piece of toast, and then take my Sprycel, when the alarm I set on my phone went off. Routine, natural; just like my vitamins.

Every day since I began taking the Sprycel I would start the day off feeling relatively well. As the day progressed I began to fade and started feeling crappy. This crappy feeling was intensified by the summer heat, so I began to stay inside in the air conditioning. Staying inside helped, but I still often either needed to just sit and relax, or even take a nap. After dinner, around seven or eight o’clock at night, I would begin to feel a bit better.

I have now been taking the Sprycel at ten o’clock at night, right before bed and I am feeling better, with a bit more energy during the day. My theory is that I am sleeping through the “crappy” feeling. I do not know whether or not this trend will continue; or whether or not this is just a coincidence, but for now I am very grateful to have a bit more energy throughout the day.

It seems as though sometimes the simplest adjustments can make a huge difference. It amazes me that medical professionals do not know these little tips and tricks. I am sure that I am not the only patient on Sprycel who is suffering from side effects, and if taking the drug at a different time during the day helps to minimally alleviate any portion of these side effects then why in the world wasn’t this suggested. I will be telling my doctor on my next visit and with any luck, he will pass this “suggestion” on to other patients that are suffering from the afternoon yuckies. I will also keep you posted on my very optimistic, yet slight, improvement. I will take what I can get!

Friday, July 22, 2011

Boise Bound; CML Coming Along for the Ride!

Flying to Boise proved to be a whole lot easier than flying to Portland. It was a straight shot and only, a one hour flight. I did feel a bit fatigued, but the excitement of having dinner that night, with a couple of very close friends, helped me to put the fatigue on the back burner.

As you may or may not know, I lived in Boise, Idaho for three years. I followed my son, daughter in law and then 6 week old granddaughter there. Almost three years ago, Joe and I met at a dance convention in Palm Springs, Ca. After playing the long distance, taking turns flying back and forth, hours and hours on the phone game, we decided that I would move to southern California; for two and a half years. The decision was made with a time stipulation of only having to endure the “city” life for the two and a half years that it would take, for him to retire. He then promised to move out of southern California; and back to Boise.

Boise holds many fond memories for me. When I first moved there, I didn’t know anyone, with the exception of my son and his growing family. My youngest son was in middle school and loved to go to the Rec Center, in Nampa, where we lived. One day, when I was dropping him off, I picked up one of their monthly bulletins. In it, was a Ballroom Dance class. I didn’t have a partner and I had never danced before, but I had always wanted to learn. I signed up and the rest is history!

I was disastrous; I had two left, pigeon toed, feet, no balance, no rhythm and I danced to the beat of my own drum. Despite my lack of talent, I pursued my new found addiction and in the process discovered an entire community of dancers, who have all become a second family to me. Boise is more than a location; it has become home, away from home.

We are spending the entire week, driving around looking for homes, during the day; and seeing and dancing with friends in the evenings.  We have an all-day dance workshop on Saturday, with a dance that night. That will be the greatest challenge, but with all of the offers of help from friends, I am sure that I will be fine.

Ahhh, it is so good to be home!

Thursday, July 21, 2011

Fun Day in Portland; Despite Leukemia and Sprycel

With the competition behind me and no plans to compete in the Jack n Jill’s in the morning, I was free to sleep until I awoke. Amazingly, I didn't stir until 11:00 am the next morning. I think that the 13 hours of sleep “did my body good”, as I felt much better and much more like myself. Since the ballroom was going to be full of competitions all day long; we decided to take the train into Portland, neither one of us had ever been there.

I must tell you that from the moment we landed in Portland we were and continue to be pleasantly surprised. At the airport, our luggage arrived on the turnstile before we even made it to baggage claim; the shuttle for the Sheraton was waiting for us right outside the door. The driver filled us in on all of the local sites and gave us a few tips to make our stay more pleasant. The check-in process was efficient, quick and painless; the shuttle driver followed us to our room, with our luggage, without a wait. Everyone was so incredibly efficient and polite. I know I will probably catch some flak from this comment, but here goes anyway, “You certainly could tell that we were no longer in southern California!”

Since I have traveled much of my life, I am a HUGE hotel critic! I know what does and doesn’t work in a hotel room. This particular hotel was pretty close to getting it right. They had a hook on the back of the bathroom door; a coffee/tea pot; a refrigerator; and a “Big Ugly” aka a magnifying mirror for my old and blind eyes. The bottom sheets were actually fitted and soft. Since they were located directly next to a runway, they provided ear plugs. Room service was the same price as the restaurant and arrived promptly, still hot.

What they didn’t get right was there were absolutely no drawers in which to put your clothes; a HUGE bathroom counter with only one sink; and a stupid bathroom mirror. It was one of those mirrors that were in three pieces, the two end pieces were opened inward toward the middle mirror and if you were not standing directly in front of the sink you couldn’t see yourself. They didn’t flatten out and they were the only mirrors in the room; Stupid, Ugly, Dumb!

Anyway, the shuttle driver took us down to the airport where we could board the train. Another clue that we were not in southern Ca. anymore was the fact that riding the train, and purchasing a ticket to ride the train, was purely based on the honor system. There was a machine in which to purchase your ticket and absolutely no one to make sure that you did. This applied to everyone; at every stop. No one ever checked anyone’s tickets and there were no turnstiles or ticket counters’ anywhere; crazy, huh?

We took the train into the heart of the city and went to the “Saturday Market”; on Sunday.  Saturday Market was a conglomeration of food vendors, artists and entertainers. Fortunately it was situated by the river; so it wasn’t too hot. We walked around the picturesque city and enjoyed the sites.

All in all, it was a good day. I am already dreading the plane ride to Boise in the morning. Hopefully, it will be uneventful as it is a short, direct flight. I am praying to feel great for the rest of the week.

Wednesday, July 20, 2011

Competing with Leukemia after Flying; No Fun! Just Call Me the Black Panty Girl!

Typically when I compete, it is at 8:00 am, with warm ups at 7:00 am. Luckily at this competition we didn't need to be in the ballroom until 9:30, which was a huge relief. I slept well and woke up feeling OK. I had actually managed to finish sewing and stoning my new costume and I thought that it was going to be a great day. Wrong!

By the time that I got to the ballroom, I had that achy, fevery feeling, so I took an Ibuprofen. We had also decided to delay my daily dose of Sprycel (Dasatinib) until later in the day. Joe actually came up with this brilliant theory; if I take Sprycel at my “normal” time, 10:00 am; I usually start feeling crappy around 3:00 pm, about five hours after I take it. Usually, I start feeling better around 9 or 10 pm; so, he suggested that I try to start taking it at 10:00 pm, right before I go to bed, that way I would sleep through the “yucky” part. Worth a try, right?

Anyway, back to the ballroom; besides feeling a bit achy and extremely tired, I realized that I had left my brain back in bed, still sound asleep. I was present in body, but not in mind. It was the strangest feeling; it was as though my head was completely vacant .I actually felt a bit like I feel when I need a shot of Neupogen. The only other time that I have experienced that vacant-ness was when I was actually in the hospital going through chemotherapy. I was very odd and disconcerting.

I seemed to do alright during warm up’s, despite not having a brain and I remember walking out onto the floor for our first dance. I remember hearing the music, starting the dance and then all I remember was turning and turning and turning, thinking why in the world isn’t he picking up my hip! I knew that I must have blown out of the routine, yet I hadn’t a clue of when or where. Somehow, being the Pro that Joe is, he managed to pick me up, get us back into the routine and finish the dance with no one, the wiser. I apologized profusely and wondered how the rest of the day was going to play out. It was not a great start to the morning!

The next dance is a Polka, which ought to get the nerves out and wake me up, right? Nope, just as vacant as the last dance but fortunately I only had one mis-step and it was an easy, no-brainer fix. The day continued on this way for another two dances; a friend of mine then offered me a sip of that five hour energy stuff in a small bottle. I was a bit reluctant so I only took a small sip after making sure that there was no grapefruit in it.

Waltz was our next dance. It began with the same empty brain, but somewhere near the end I actually felt like myself. I knew where I was and I knew what I was doing. It was a miracle; a short lived miracle, but a miracle nonetheless. The clarity came about quite suddenly and left just as quickly. I spent the remaining part of the competition and the rest of the entire day in a foggy, I just don’t feel good, daze.

Now, for the topper of the entire day; After the competition, I approached one of my judges to ask for constructive criticism. I expected some sort of dance related tip, but instead, she asked me; “What in the world is up with those black panties???” Great, right?

Now, let me explain; if you remember, I had previously bought material and a TON of rhinestones, a bathing suit pattern and some elastic. I put my imagination to work and made my own costume. The short skirt was almost to my knees so I thought that it was long enough to NOT show my panties. It actually has a full bathing suit/body suit underneath the outer costume, so there was absolutely no reason for my “black dance panties” anyways; I had actually put them on without even thinking about it, as I had worn them in all of my other previous competitions.

As it turns out, the bottom couple of inches of the black, dance panties were sticking out below the leg of the orange ( in recognition of leukemia), body suit. Mind you, I had previously asked four different people if my skirt was too short, or went up to high when I turned. “Did everything look ok?” Every one of them said, “No, it didn’t go up to high and everything looks just fine.”

Thanks guys, for NOT mentioning the black panties!!  I am now, and forever will be; “The Black Panty Girl!” A perfect ending to a not so perfect day! It seems as though I gave many dancers’ something to talk about for the entire weekend.

Despite my complete out of body experience I finished second overall; more importantly I danced better than I did at my last competition and managed to compete in all eight dances instead of only five. Nowhere to go but up, right?

Be sure to watch for the Black Panties!!

Tuesday, July 19, 2011

Flying with Leukemia

Probably for the first time in my life, I am packed and ready to go on our trip; a full day ahead of schedule. Since this is the first time that I am going out of town, for an extended period of time, since being diagnosed with leukemia, I want to be sure to be prepared, get a good night’s sleep and to alleviate as much stress as humanly possible.

Our flight doesn’t leave until 2:30 in the afternoon, so we do not have to get up early, allowing me to get a full twelve hours of sleep. We head to the Fly-Away at noon and arrive at the airport in plenty of time to catch our flight. So far, so good…no stress, easy boarding and the first leg goes smoothly. We land in Sacramento and change planes. Life is still good; for approximately the first fifteen minutes of the second flight.

Initially everything was fine, but as the flight continues I became nauseous, get a headache and cannot keep my eyes open. Thank goodness I always travel with my pillow; I propped it up against the window and fall asleep within seconds. Once we land in Portland, I feel totally groggy and feverish. I take two, Ibuprofen and hope for the best.

After settling in at the hotel, we go down to grab a bite to eat. Since we haven’t had a ton of time to practice and we are competing in the morning, we head to the practice room to run through our routines. Being that I am a woman, and overly ambitious and tenacious, and bound and determined to not let cancer get the best of me; I put on my “performance” face, take a deep breath, and start running through our routines. By the time that I finish, I feel as though I have a fever and I have to drag my bumm all the way back to our room.  I need to get a good night’s sleep, as we are competing first thing in the morning.

I ponder why I might be feeling so miserable and come to the conclusion that it had to be the flight. I will be looking into why it has affected me so negatively. I wonder if the fact that my red blood cell count being so low, thus carrying less oxygen to my body, was even more affected by less oxygen when flying. I know that they say that the cabins are pressurized and have a sufficient amount of oxygen, but one might wonder when the water bottle that you carried onto the plane is sucked in and crushed when you land.

More research in my future; leukemia sure has increased my knowledge, now if I could only remember where I put my cell phone!

Monday, July 18, 2011

First Trip Since Being Diagnosed with Leukemia

It has been almost five months since my initial diagnoses of chronic myelogenous leukemia. We were forced to cancel our annual trip to Cabo San Lucas and our trip to Germany, but have been given the green light to travel to Portland, Oregon for a dance competition and then on to Boise, Idaho; to visit old friends, search for a new home and to teach a dance workshop. We will be gone for ten days. This will be a very ambitious undertaking!

As I am packing and getting ready for our trip, I must admit that I am very, very excited; yet very apprehensive. There is an underlying nervousness that I have never experienced before. I have always been a happy-go-lucky, kind of a girl that traveled without a care. Having leukemia seems to have put a bit of a damper on my carefreeness. I know that I can no longer count on my health and that it can take a downward turn, at the drop of a hat.

Here at home, I have established a safe and comfortable cocoon; I know that help is just down the road; traveling means that I am at the mercy of unknown medical professionals. It is a bit scary to wander out of my “cocoon” and away from my own doctor that knows me and my leukemia very well. I am sure that some of this apprehension arises from my frequent visits to my folks, just a few hours from here; seems as though every time that I have traveled there, I have had some sort of set-back.

I do have a bit of peace and comfort, knowing that for the majority of our trip we will be in Boise. Through my blog, I have been in contact with another gal, whom also has CML, and lives in Boise. She seems to like her doctor and that is a “good-thing,” help IS available. The other comfort is in knowing that I have so many friends in Boise; if something were to happen while I was there, the rescue squad would rush in.  Boise is my home away from home and I can hardly wait to move back there next year.

So, as I ready for my competition and trip, I am trying very hard to stay positive and put “healthy” vibes out into the universe. I have yet to take my leukemia on a plane and to be quite frank; the floating cesspool of germs that will be recycling through the aircraft is frightening. I have been taking my vitamins religiously, I plan to plop two Airborne’s into a bottle of water as soon as I get through security and will be constantly washing my hands. I am hoping that the plane ride will be uneventful and that the Dance and Travel Gods’ will be with me throughout this venture. I am praying for a safe, happy and healthy trip.

Off to finish packing!

Thursday, July 7, 2011

Leukemia; Low White Cell Count Dangers and Precautions

As I prepare for my first trip since being diagnosed with leukemia, I am taking major precautions to ensure that I do not end up sick. Since a good portion of our trip will be dance related, I will be in close contact with many people. If you are ill, please do not be offended if I do not dance with you; it is for my own health and I must be very careful.

Chronic Myelogenous Leukemia is a blood cancer that affects your body’s white blood cells. The treatment for this cancer is a daily pill, Dasatinib(Sprycel),  that inhibits the chromosomal switch that causes your body to produce an abundant amount of immature white blood cells, thus crowding out all other healthy cells. One of the side effects of this drug is a lower, overall blood count, which suppresses the immune system; thus reducing the body’s ability to fight infection.

One of the most important things that I can do, to help prevent getting ill is to avoid sick people. I know that this is not entirely possible, but when I know that someone is sick, I must stay away.
Secondly, I must wash my hands well, and often. I also carry anti-bacterial liquid and use it frequently when I dance. I can just imagine the germ pool that exists on a dance floor!

Third, I must be sure to get plenty of rest and be careful not to “over-overdo it”. This will be the most difficult part of my trip. I am so looking forward to getting out of Los Angeles and seeing all of my friends back in Boise.

Fourth, I must continue to eat a regular and healthy diet. This is not very difficult at home, but sometimes when traveling; it can be a bit more challenging. I also must be conscious of the actual handling of the food and it probably will be a good idea to stay away from actual salad bars.

I think this one will do!
Fifth, I will definitely need to stay hydrated at all times and avoid situations where I will be out in the sun and heat for any extended period of time. I will need to have snacks; fruit, nuts and water in the car for all of our jaunts in and around Boise while we are house hunting. 
I can hardly wait until tomorrow and am praying that I feel well and have a great week.

Wednesday, July 6, 2011

Chronic Myelogenous Leukemia Summer Sucks! Signs and Symptoms of Heat Exhaustion

Summer has never been my favorite season. I much prefer Fall and Spring; out with the old and in with the new! Winter has always been a time to catch up and Summer; a time to endure. It seems that no matter where I have lived, and I have lived many places, the summers were always miserable. The east, south and mid-west are horribly hot and humid, and the desert is purely intolerable; yes it is hot and dry, but it is so hot that you cannot even breathe. I lived in the Palm Springs area for 16 years and hated the heat more and more with each passing year.

If I were to choose my favorite year round weather, it would be Big Bear Lake, Ca. I lived there for 7 years and it boasts 350 days of sunshine per year, yet all four seasons are equal in length and generally, moderate. It may be hot in the afternoon, but by four o’clock it cools down enough to put on a pair of jeans; gotta’ love that!

I constantly joke that I have a broken internal thermostat. Just ask my friends; I am always either hot or cold! I have about a four degree window in either direction. Seventy Eight is perfect, seventy four and I am cold, eighty two and I am hot! What a whiner!

Staying Cool in the Pool!
I will admit though, that I would much prefer the cold over the extreme heat. This summer is proving to be increasingly difficult. Prior to leukemia, the heat just caused a discomfort; now it causes me to literally feel “sick”. I wasn’t entirely certain of this fact until yesterday. I kinda’ thought it might just be coincidental, that I was feeling crappy every afternoon, but I am now convinced otherwise. Yesterday I went out in the morning, feeling fine, and was back by noon. It was already in the 90’s and I spent the rest of the afternoon feeling nauseous, headachy and miserable. By nine o’clock that night I was feeling much, much better. I also woke up feeling fine.

Today I shall remain inside, in the air conditioning, until it is time for my last dance practice before my competition this weekend in Portland. I already know that I am going to be hot and miserable, but I am just going to have to suck it up and dance. Tomorrow I will not leave the house. I am thinking that summertime with leukemia just isn’t going to be fun. I will have to do any errands either really early before it gets too hot or in the evenings when it cools down. I am not sure whether it is the Sprycel or the actual leukemia that makes the heat so intolerable, but I am going to try and really pay attention to my body and to do everything that I can to ensure that I do not end up really sick and back in the hospital.

I will be staying out of the heat, as much as possible, and hydrating myself with tons of water and de-caffeinated iced tea. I wish I could choke down those sport drinks but I just can’t do it! I will refrain from doing any physical sport outside in the sun and be sure to wear light-weight loose clothing and a hat. I have found that running cold water over my wrists, when I am extremely hot, also helps; as does a cool shower or bath.

The major signs and symptoms of heat exhaustion include:

1.                  1. Nausea
2.                  2. Vomiting
3.                  3. Fatigue
4.                  4.Weakness
5.                  5. Headache
6.                  6.  Muscle Cramps
7.                  7. Dizziness

If you experience any of these symptoms, get out of the heat immediately and cool and hydrate your body. 

Sunday, July 3, 2011

Damn Sprycel; Damn Leukemia!

I will preface this post by saying that I had the most fabulous week that I have had since being diagnosed with CML and wouldn’t trade it for the world.

The following is the repercussions of my having too much fun; granted I did have two little girls, one little boy and two four hour drives within the past five days, but come on, being wiped out after this much activity really sucks! My daughter was even here to pitch in. It wasn’t as if I ran a marathon, stayed up partying all night or dug up ancient ruins in a desert, all I really did was, enjoy my grandchildren.  All of our activities were simple, quiet projects; all low key. They were in bed by eight and slept all night. The kids were fabulous.
For those of you with chronic myelogenous leukemia that have young children, my heart goes out to you. I know what it is like to put on the “happy” face and push through the day, but being a parent with this disease must really suck! Your heart says “Go”, your body says “No” and your pure persistence, and love for your family and others, just keeps you pushing through; often to your own detriment.

Later you pay the piper; it is your own fault for ignoring your body. It really is sending small signals, that enough is enough. When is “enough”, EVER “enough”, I ask? Pretty much never in my world, and that would be why I just keep pushing, even after I hit the “you have done too much, crappy wall.”

What first begins to happen to me when I am reaching that point, is that I begin to feel fever-ish, then I start getting a headache and nauseous and my energy level drops to zilch. I feel as though I am a walking zombie, just going through the motions; almost like I am watching myself live my life. I am foggy in the brain and my body just does stupid things; like walking into a wall, tripping up the stairs or just dropping things for no apparent reason. I get mouth sores and achy.  I also become more emotional, whether it is a good or bad moment, I cry. How stupid is that! I actually cry MORE over “happy” things than the sad. I just want my old self back, I want to be “me” and I want to be able to do the simple things that I used to do without having to pay for it.

I will admit that I did sleep an extra three hours the past two nights and that has helped. I am hoping to avert a further downward spiral, as I have a dance competition next weekend and then a “vacation” in Boise the following week. Unfortunately, I have experienced the results of really doing too much and been taken down by doing so, so I don’t intend to “play THAT game” again. This week I shall try to lay low to avoid another setback that might prevent me from competing and enjoying my time in Idaho.  I had my fun and now I shall re-coup; or at least try really hard to do so!  Leukemia Sucks!

Bricks for the Brave!!