Tuesday, May 21, 2019

Should I See A CML Specialist or Not?

During the past few weeks, I have been contacted by people either newly diagnosed with CML, or people receiving concerning information regarding their response to their current treatment regiment.

My response, every single time, has been to seek the advice of a CML Specialist for a second opinion. Why one might ask, do I feel so strongly about seeing an actual specialist for treatment? Well, the simplest reasons that I can give is that a CML specialist not only stays current with the ever-evolving treatment of CML, they also see other CML patients.

By seeing other CML patients, they have a wealth of information and experience, from which to draw. They have gathered this information by seeing many different responses, in many different patients, to not only cancer but its' treatment, as well.

Chronic Myelogenous Leukemia is more often than not, a lifelong blood cancer. During this journey, it is not unusual to experience ups and downs; of cancer, and its' treatment. By seeing a specialist in this field, you are giving yourself, in my opinion, the best possible shot of controlling your cancer; long-term.

Do NOT wait until it is too late!
Specialists are more likely to recognize unusual, or concerning patterns and trends in your response to your current treatment (as they have been exposed to more patients, with the same disease) than someone who has only seen one or two CML Patients throughout their career. This experience and knowledge alerts your oncologist to red flags and allows you the opportunity to adjust your treatment plan quickly before the situation becomes dire.

CML often cruises along without any complications, but when and if a complication arises, don't you want the most experienced person in your corner? Don't you want the changes to be recognized quickly? Don't you want someone that has seen what you are going through before? Don't you want someone that has tried many different options and seen their outcomes as a basis on how they should treat you? Or do you want to be the guinea pig? Do you want to risk your disease progressing to an accelerated phase, or even blast crisis before seeing a specialist?

I know, for a fact, that I do not.

I know that I want someone experienced in my disease, in my corner, right from the start. Someone that "knows" me and my medical history.

I want someone that says to themselves, "I have seen this before." I want someone that has a wealth of information from which to draw and I want someone to recognize the early signs of complications. I do not want someone that is guessing, or reading "typical treatment protocol." I want someone that treats CML on a regular basis, not just when I walk through the door.

During the past eight years, we have lost many CML patients in our community. I truly believe that most of the deaths occurred because of improper treatment and the failure to recognize the warning signs that these patients were starting to experience, before entering a dangerous phase of their disease. By the time these people realized that they really needed a CML specialist, it was often too late.

I believe that having established a relationship with a person that is the top in their field is a very wise choice. I also know that I want to be around, for a very long time, and I believe that seeing a specialist is my very best option for doing so.

Love yourself enough to see a specialist!
I know that logistically this is not always the easiest thing to do. I live in Boise, Idaho and my oncologist is in Los Angeles, so I know all about the inconveniences. I most often see my oncologist three to four times a year, and when I am unable to physically "see" him, I am able to have my blood drawn here at home, and then sent to the lab for testing. Modern technology and ease of communication are great for long distant "relationships"!

I also know the importance of having a great medical team right here in Boise to deal with side effects and emergencies. I feel prepared to tackle any complications that may arise.

This is your life; don't you deserve the very best care available?

If you are not seeing a CML specialist, please consider at the very least, a one-time consultation. Many specialists will agree to work with your local oncologist, and by establishing a relationship with a specialist, they will be on board, should any complication arise.

You are worth it!

My best to all of you CML Warriors!

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Thursday, May 9, 2019

Reflections on a Wanderlust Spirit!

Turning your hopes and dreams into reality can sometimes be challenging and even risky. My entire life I have lived with a wanderlust spirit. I have a strong desire to experience and witness the vast diversities that exist upon our planet. I feel that exposing myself to different lands and cultures enlightens me, and gives me a broader, more sensitive view of the world, in which I live.

Living with chronic cancer makes this wanderlust spirit a bit more difficult to fulfill, as making plans, travelling and being far from home and medical care is a little scary, but I have reached a state of mind that what will be, will be: Que sera sera.

I refuse to allow the "what ifs" to come into play when planning a trip and bank on the "well if it happens" then I will deal, to prevail. I will face whatever comes along, and not worry about whether or not something will go wrong. (because it almost always does!)

My greatest fear of becoming ill, while in a foreign country did occur while we were in Bucharest. I got slammed with a chest cold, fast and hard. I considered cutting our trip short and flying home, fearful that that virus could turn into something much worse than a cold.

The sights of the world leave me speechless!
After emailing my oncologist, and his encouraging words of, "I believe that you should be able to weather that virus." I stuck it out, rested, treated the symptoms and overcame my worst fear. I must admit, I was a little scared, but in the end, I was so darn proud of my body!
The worst had happened and I had survived!

Often, we allow fear to dictate our lives, which can prevent us from living them. I am hoping that conquering my greatest fear will allow me to continue to follow my wanderlust spirit on many more adventures.

That being said, I also must allow myself the time to rest and recuperate and to listen to this tired old body! lol After returning from our six-week trek through Europe, I attended our monthly dance, taught Country 2 Step and danced way too many dances!

I have been down and out ever since with nerve pain in my feet and a flare of skin and bone pain. Apparently, sometimes you have to pay, to play! And that is alright, too!

There is always light at the end of the tunnel!
For those of you that are newly diagnosed with chronic myelogenous leukemia, or any other chronic disease, allow yourself time to adjust to your disease and your treatment; I am eight years into this journey, and looking back, the first two to three years were rough.

I still managed to live my life, enjoy adventures with my friends and family, but I had more downtime. My body needed more time to rally between my excursions, and that is alright. Know that if you wait to feel "great" to enjoy your life, you may never enjoy anything again.

But also know that when you push yourself to do something that you do enjoy, your mental state will feel "great" which in turn, will help your physical self to heal. Finding joy makes the hurt a little less painful, and a little easier to endure.

Living and loving life

FaceBook: CML: A Place for Hope and Humor

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Thursday, May 2, 2019

Today I Am Sixty: 6-0!

On a bridge in Prague!!
Sixty! Wow! When I was diagnosed with chronic myelogenous leukemia at age 52, I prayed that I would live, to see 60, and here I am! I still have leukemia, but I've currently got that little sucker under control, and hope it continues to stay that way for a very long time.

I remember turning forty; I was devastated: I felt over the hill, and OLD! Boy, was I delusional? So much has happened during the past twenty years, that looking back, it is difficult to understand why forty pushed me to the brink.

Some of my greatest adventures and accomplishments happened during the decades between my forties and sixties, and looking back, I marvel at how differently I view life now, from how I viewed it then.

I am not sure whether it is turning sixty, or the fact that I am sixty living with chronic cancer, or a combination of the two, but I look at every single day as an adventure and a blessing. I am grateful to be alive to participate in this thing we call life.

I have literally been giddy since my birthday! I just keep laughing and saying, "I am SIXTY!!!" Sixty years old and loving every single second.

yes! entertaining myself in Paris! There were millions of me!

How lucky I am to have reached this milestone; six decades of ups and downs, good days and bad, happiness and deep sadness and loss. All of these emotions that culminate into a lifetime of memories and experiences that make me who I am today.

I am grateful to still be alive and I look forward to the rest of my life, however long that may be. I am up for the challenges, the struggles and the triumphs and I am so grateful to each and every single person that touches my world. It doesn't matter if you are near or far, your presence is always felt, and appreciated.

I love my life, my husband, my children, my grandchildren and I love my village of dear, dear friends!

Thank you for sharing my world and making my life so extraordinary.

I am SIXTY!  hahahahahah

FaceBook: CML: A Place for Hope and Humor

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#lovemylife #turningsixty #thrivingwithcancer #lovemyvillage

Bricks for the Brave!!