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Monday, November 2, 2020

Clinical Trials: Where Would We Be Without Them?

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much-needed awareness about the power of breakthrough research.


When you hear the phrase, "Clinical Trial" where does your mind go? Does it immediately dismiss the thought, or do those words pique your curiosity? Do you think "Lab Rat"? Or do you think "Hero"?

Prior to being diagnosed with chronic myelogenous leukemia, in February 2011, my mind went straight to, "I wonder how much it pays?" So, opportunistic, I suppose.

Today, I take those two small words much more seriously, as I would not be alive today if it were not for clinical trials. Funny how your perspective can change depending upon your circumstance. I now have great admiration for those in clinical trials; I consider them "Heroes".

Without these Heroes many drugs, vaccines, and unproven medical procedures which are commonplace today, may not have even been an option, years ago. They were just thoughts and ideas, yet to be proven more beneficial, than harmful. They were someone's pipe dream.

While clinical trials can sometimes be risky and time-consuming,  they are a necessary step toward reaching new medical advances and cures for many different diseases and conditions. 

Often clinical trials are filled with people who have become desperate to either find a cure, or extend their life as they have exhausted all approved medical treatments., and have tried everything possible to either cure or control their disease or condition.

 Other trials are filled with people who truly just want to be a part of furthering the advances of medicine, treatment, and cures. Take the coronavirus vaccine for one. This is a trial that is not dictated by having a specific disease such as cancer, or a condition such as diabetes. 

It is an injection that may prevent an illness, that has been claiming lives and causing long-term damage to many people. By agreeing to be one of the first humans to receive the vaccination, you may be a part of saving thousands of lives, worldwide.

You may be one of the first people immune to the coronavirus and a part of a huge medical breakthrough. 

Entering into a clinical trial when you have reached the end of your rope is a fairly easy choice; you most likely feel desperate and are willing to risk, adverse reactions. You may find yourself grasping at any and all possibilities and you have refused to give up hope; you are willing to take a shot in the dark, not only to save your own life but also to help others, in the process.

Patients Have Power.

Choosing to enter a clinical trial returns some sense of control to a patient, and gives a person hope. This hope in turn gives their life meaning, even during what may be their final days. Having a purpose, and giving your life meaning is an important aspect of life, and participating in a clinical trial may mean saving or improving your's and sometimes, more importantly, many other lives, based upon the results of your participation. To me, this is a selfless act and should be applauded.

I am alive today because of people who entered a clinical trial for Chronic Myelogenous Leukemia. The first clinical trial began in 1998, with a drug named Gleevec; through its success, Gleevec was FDA approved, for treatment of CML, in May 2001. This groundbreaking discovery has vastly changed the outcome of CML patients from certain death to a bright future; one that often rivals the life expectancy of someone who does not have cancer.

Today there are clinical trials for people with CML to try and live in treatment-free remission, after achieving a non-detectable state, for several years while on drugs used to control CML. I know and admire many of these pioneers and someday hope to qualify for a clinical trial myself.

Being that I now personally understand the importance of clinical trials, I hope to someday be able to offer my body in a trial, in order to give back what I have been given by the brave heroes of previous clinical trials. 

I was astounded by the number of trials that are currently either recruiting or are in the process of gathering data. If you want to be a part of something bigger than yourself, you may wish to do a little research and join in a clinical trial. 

Clara Health is a great place to find the latest and greatest medical treatments and to help you find a clinical trial if one exists, that is right for you. 

By joining a clinical trial, you may find that your time and efforts are rewarded by helping others, by giving the hopeless, hope, and in return, you will have the satisfaction that you have been a part of something bigger than yourself. 

I am grateful for those running medical trials and for those heroes that are a part of them.

Clinical trials ROCK!

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Sunday, August 9, 2020

Cheekwood Estates During Coronavirus

This is going to be our last adventure for a while. I feel as though we have been lucky thus far venturing out into our new world filled with coronavirus and its new restrictions.

We are going to go to the Cheekwood Estate which is currently exhibiting the Dale Chihuly glass sculpture collection. It is mostly outdoors, with limited reservations to view the home. so I feel quite comfortable with their precautions. 

Of course, I will not be touching anything, or breathing anyone's air!

This estate was once the family home of Mabel and Leslie Cheek. It is an extraordinary 1930s estate with a large Georgia mansion surrounded by 55 acres of splendid gardens. 

Upon arrival, we were greeted by an amazing "tree of glass"! It was red, orange, and yellow and was the largest glass sculpture I have ever seen. Truly a remarkable piece.

As we continued to wander through the estate, we were met with one astounding sculpture after another. They were sprinkled into forests, ponds, and gardens which created a serene environment, one that could calm even the most anxious person. I was mesmerized by the enormity of glass.









I have seen Dale Chihuly's work before, as there is a hanging sculpture in Palm Desert, Ca. where I lived for 16 years. It was on the way to my parent's home and at the time, I had no idea who Dale Chihuly was, I just knew that there was a huge yellow, octopus looking glass sculpture, that I was curious to see whether or not it would survive our earthquakes. Thus far, it has!







This was amazing!


I have also seen his work at the Bellagio in Las Vegas. 

Seeing his pieces out it the open, set amongst beautiful gardens was a unique treat. Apparently, they are even more stunning at night. We hope to go back to the Cheekwood, during Christmas time, as we have been told that between the Chihuy's lit up at night, and all of the Christmas decorations, it is a sight not to be missed.





This view is astounding!





If you are ever in the Nashville area, I highly recommend enjoying this property.

After perusing the gardens and seeing all of the outdoor installations, we headed inside for our tour of the estate. I was pleasantly pleased with how they limit the guests inside. The home is truly stunning and the views are magical! I can only imagine a bride and groom standing on the verandah overlooking the rolling hills of Tennessee!






In the entryway, there was a new installation of light, suspended from the ceiling. When you looked at it, it just appeared to be a circle of pendants lights, but when you stood underneath it, with a camera, you saw a completely different illusion. It was oh, so cool!






There were Chihuly pieces throughout the home, with a large collection of bowls and vases on the second floor.



Love the Neon!



Sketches?








While we were looking at a poster of his work from the 1970s through 2000, I suddenly remembered that my cousin, Lee Ann Koveleski, was a glassblower in the Pacific Northwest. I was telling Joe and Kevin that story when I looked up and saw her standing in the poster from the 1980s!! Seeing her smiling, behind Dale Chihuly while he worked gave me chill bumps!

LeeAnn Kovelesi; my cousin


My husband and son were like, "What?" And I was like, "That, right there, is my cousin!!" I was not kidding and was just shocked to see her in that poster! My husband immediately saw the family resemblance, and we marveled that we had just seen her Mom and Dad this past November.

It was such a funny coincidence! Kinda' topped off the whole day with a bit of nostalgia. As children, we were quite close, but our family moved away from Pennsylvania during my later childhood years, so unlike today, where communication is so easy, we lost touch and did not remain close. I was, however, aware that Lee had become quite a reputable glassblower until the art destroyed her body, so seeing her standing there was a real treat!



Who is that old lady????


We had a lovely day and decided since we were so close to "Prince's Hot Chicken" food truck, that we should give it another shot! I really decided to throw caution to the wind and actually ordered some hot chicken for myself! IT is the very first food that I have eaten, that we have not cooked, since March, and I gotta say, It did not disappoint!!

The medium is HOT!

Yes, Please!


Prince's Hot Chicken is the bomb!

Now to start the two-week countdown over; that's how long it takes, right?

Happy Day, hope you enjoyed the photos!


on the ceiling!



FaceBook: CML: A Place for Hope and Humor
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Thursday, August 6, 2020

A Totally Spontaneous Day!

Today Kevin had plans to golfing at our local course. I thought I might join in, just to get out of the house and to visit with him. My husband thought maybe he would join us and actually golf even though he hasn't golfed in a bazillion years, and Jack said, "Well, I have golfed a few times with my Dad, so I would like to go, too!"

So it was settled, we were all going to head to the golf course at 8:00 am, as they do not take reservations and we were told to just show up.

Now, for those of you that know me, you know that I am not a morning person; it doesn't mean I can't get up in the morning, it simply means that I do not like to! lol

My son even had doubts as to whether or not I would actually be up and ready to go so early, but I fooled them all by being the first person ready to head out the door!

We piled into the car and drove to the golf course. Upon arrival, we noticed that there were tons of cars. Something the dude on the phone did not bother to mention was that they had a tournament going on that day, and it would be at least an hour before we could get onto the course.

Now that totally sucked! I got up at the butt-crack of morning for nothing?

Oh, NO! We got back into the car and I said, "It is only 8:30 in the morning and I am out of the house; we are NOT going home!"

"What are we going to do?"

Well, we headed to downtown Nashville, to the Johnny Cash Museum, which was opening at 10:00 am. Who the heck goes sightseeing at 10:00am?

Apparently, we do!

We parked at the Nissan Stadium because it is free and walked over the pedestrian bridge which was really cool.

Upon arrival at Johnny's, there were few people, masks, and social distancing required, so we went in. It was really special to see his memorabilia and read about his life. But, it wasn't as much fun as Graceland, however, I was grateful for the experience.

NOW, it is only 11:15!! UGH! it is going to be a LONG day!

I am still not ready to throw in the towel, so we decide to show Kevin and Jack the "hip" part of Nashville; Broadway. It is not nearly as impressive as it is at night when everything is open, but it was still fun to meander down the strip.

The boys thought they should try some "hot chicken" which Nashville is famous for, so despite the fact that I haven't eaten out one bite since March, I told them that they could eat, and I would eat the granola bar that I had brought!!

I asked a walking policeman where he would eat hot chicken and he told us "Prince's" food truck, up four blocks, and over four more! Off we went, in the heat, in search of hot chicken!







Miraculously, we found the food truck, only to be disappointed because it was closed on Mondays. BOO! At this point, we are far from the walking bridge and our car, so we headed back towards Broadway. 

We passed a restaurant that was open and since the boys were starving, we went in. I was a bit freaked out despite the fact that people had masks on because of course, you have to take them off to eat, so what the heck?

Our waitress brought us water, with her mask on, however, she grabbed the plastic cups with water, with her fingers around the rim! GROSS! So much for not spreading germs!



Needless to say, I did not eat or drink and could hardly wait to get out of there! The doors were open so there was fresh air, and people were spread WAY out, but I still was not impressed. On top of that, according to the boys, the food was not very good.

By now, I am wondering what the heck I am going to do for the rest of the day, as it was only 1:00 pm, and I am up, dressed, and out of the house! Fortunately, right across from where we parked was a Top Golf!

I said, let's go! Why the hell not? We didn't get to golf at the course, so this would make up for that.

I had never been to Top Golf before, but since I had golfed, decades ago, I was excited to hit a ball or two!
We got a bay on the third floor which was awesome! Outside of our bay, masks had to be worn, but inside our area, they did not.





They had put up floor to ceiling barriers to contain each bay's germ and hey ensured me that each bay and the clubs, were disinfected between every use, so I felt pretty good about being there.

I was also really excited! The boys all hit the ball like champs! I was a bit nervous my first time up, as I had rotator cuff surgery two years ago, and certainly had not hit a golf ball in a very long time, but I wasn't going to let that stop me! I stepped up and swung, and my arm did A.OK!

I didn't take as many shots as the boys, as my arm did get tired, and since I only have one "cep" of my "bicep" I didn't want to push it. But, it was SO MUCH FUN! I even scored a few points and managed to hit the ball straight, most of the time.


We got home before 4:00 pm and I was exhausted, but certainly was not going to nap; I just am not a napper! But I will admit, the rest of my day was SHOT! I was good for nothing.

But Joe was up for making pizza!







What I learned about getting up at 7:00 am is that the day is REALLY long! And that I do not miss anything getting up at 10:00 am! 

I will not be changing my ways, but I certainly had a really great day!



FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness #cancer #chronicmyelogenousleukemia #coronavirus #leukemia #lovemylife #cml #selfisolation #quarantine #grateful #thrivingwithleukemia #livingwithcancer #isolation #coronavirus #coronavisiting

Bricks for the Brave!!