Monday, November 16, 2015

The Scary Side of CML; A Tribute to Lauren

Once again, the blood cancer known as CML (chronic mylogenous leukemia) has claimed the life of a beautiful, young and inspiring woman. She fought her battle courageously with humor, grace and optimism. She was a pillar of strength and captured the attention of so many of us, living with CML.

Throughout the battle of her second bone marrow transplant we cheered her on; prayed for her, encouraged her and silently willed CML, and the graft vs host disease to disappear. We believed that she would win the battle, yet feared the battle was just too much; too much for her to overcome.

In the end, Lauren succumbed to this ugly disease; her family said that she gained her wings peacefully and is no longer in pain. For this we are all grateful, despite the fact that we are all a bit lost, a bit angry and yes, even a bit scared.

Every time some one dies from CML, or complications prior to or following, a bone marrow transplant, it is only natural for those of us living with this disease to have questions. We all want to know the details; what happened and what went wrong? How is it possible, when we have the "good" cancer, to die?

There are many answers to this question and the first thing that we all need to realize is that each and every persons' journey is unique. Every single one of us is different; we all have different genetic make ups', lifestyles and other medical conditions which may or may not affect our treatment.

We also need to realize that every one's case of CML is different; some cases of CML are drug resistant; some may have mutations in their disease, and others may be unable to tolerate the TKI's, for one reason or another.

The most important aspects which we are able to control, are excellent medical care and diligent compliance of treatment. I personally have witnessed the loss of life due to poor medical care; to me, this is inexcusable.

I know that when you are first diagnosed, it is like being hit by a train; your mind is reeling and you do not know where to turn, what to do or who to trust. You will likely read conflicting information and receive tons of "advice" from friends and family.

So, what are you able to do; what is in your control?

Education and Choice:

I implore you to become educated; to be your own self advocate, and to choose exceptional medical advice. You need to find a CML specialist that you can relate to and understand, and then, you need to adhere strictly to their treatment plan.

It is your responsibility to choose your oncologist wisely, and to make sure that you not only understand what tests are used to monitor CML, but what they mean, as well.

My oncologist states that the number one reason for CML progression is noncompliance in treatment, especially in his younger patients. He believes that his younger patients do not understand the severity of this disease and that they believe their medications make them feel worse than the CML, so they skip doses or even stop taking their medication all together; often it is too late to reverse the damage and they find themselves facing Blast Crisis and a bone marrow transplant.

So on the heels of yet another loss to CML, stop asking yourself "Will I be next?" and begin asking yourself, "Am I doing everything I can, to the best of my ability, to manage my illness?"

Remember those who have gone before us, and live each and every day with purpose.

Fly high and fly Free, Lauren Wollenberg! You will be remembered, you will be missed and the world, and my life, is richer for having had you in it!

Thank you for sharing your journey, your humor and your inspirations.

Tuesday, October 20, 2015

Finally a Drop in My PCR!

It has been a tough year, in so many ways. The most frustrating aspect being my bouncing PCR. Since my bout of bronchitis and  suspected pneumonia last September, my pcr results (the test that measures  leukemic burden on my body) have been anything but stable!

They have bounced from the perfect score of 0% as high as .463, which to any one that lives with CML (chronic mylogenous leukemia) knows is not only frustrating, but scary, too!

This increase was no doubt from the Sprycel break that I had to take because of the pleural effusion, bronchitis and pneumonia. Pleural Effusion is a side effect from my life-saving drug and tends to haunt me about once a year; this condition is a build-up of fluid in the sac around my lungs.

My oncologist prefers a Sprycel vacation vs draining the fluid, which he and I believe, puts me at risk of infection, not to mention the pain from the procedure. This protocol has always worked for me, although at times, the break in treatment causes a spike in my PCR.

So, during this past year, we have been trying to find the golden ticket; the perfect combination of "how much" Sprycel to injest, in order to achieve a favorable PCR, without developing pleural effusion.

Our latest attempt consisted of taking 140 mg of Sprycel five days a week. This regimen did bring my PCR down from .463 to .169, but while this is still a "good" response, I know that the "best" scenario for longevity is below 1 %. Soooooooo, I wanted a .0 something number in the worst way! I was 0%, negative PCR twice before and I want it again. lol

After discussing my wishes, we decided to up the dosage to 140 mg, six days a week and see what happens. And much to my delight, after 5 weeks on this treatment plan, I DID acheive a .0 number! .074 to be exact and despite the fact that I have a small PE brewing in my left lung, I am thrilled!

I wish like crazy that this dose would not cause a pleural effusion, and I am not certain how bad it will get, or how quickliy, but the current plan is to suck it up, remain on 140 mg, six days a week until my next PCR, the beginning of January.

Please say a small prayer for me; to keep the effusion to a minimum and to continue to lower my PCR. It is going to be an interesting three months, but for now, at this very moment, I am a very happy camper!

Persistence and diligence can pay off.

Friday, October 16, 2015

Light the Night 2015

Last year was the first time that I had ever done any sort of fundraising, and it was such a great experience that I decided to do it again!

Light the Night is the Leukemia & Lymphoma Society's big fundraiser of the year,  which raises money and brings awareness to blood cancers; I guess you could say that it took  developing leukemia to get me motivated, but I figure better late than never, right?

Despite the fact that our actual Light the Night Walk was on October 1st, and we had out of town obligations,  I still chose to participate in the fundraiser, and to raise as much money as I could for research, for blood cancers.

Since last year I had so many amazing people help Dancing My Way Through Leukemia raise an impressive $2k, I decided to set this year's goal at the same $2k mark. Although we didn't quite reach our goal, we were really close; we raised an impressive $1750  for the LLS, in two short weeks; and THAT is pretty darn awe-inspiring! Thank you, to all who donated to my team; I couldn't have done it without you.

(PS; there is still time to donate, if you would like to help me acheive my goal)

Any way, the day of the walk had arrived, and my fund raising efforts had come to an end. The festivities were about to begin in downtown Boise, and we were packing to leave. I was feeling a bit bummed knowing what I was missing. I knew that there would be throngs of people; supporters, survivors, patients and many others walking in memory of those they had lost. I knew that the true meaning of Light the Night, was the culmination of so many people touched, in one way or another, by blood cancer.

It is the once a year celebration for the Light the Night campaign, applauding all that has been accomplished, through funds raised by all of us, to help find a cure for blood cancers. It is an outpouring of love and support, which is so apparent when the sea of people literally "Light the Night" and walk as a single unit, with their lanterns glowing.

Just as I had resigned myself to the fact that I was missing the big celebration, we received an email from the airlines; our flight that was due to depart at 6 pm, had been delayed until 9:30 pm. I could scarcely believe what I was reading, and what it meant. What it meant, was that we could swing by the festivities, on our way to the airport. We were going to be able to attendthe opening ceremonies for Light the Night!

I swear that it must have been a God thing; I was meant to be there, even if it was just for a short time. I know that it was a major inconvenience to many, as we all missed our connecting flights and had to spend the night in Oakland, but I truly believe that all things happen for a reason.

Although we would not be able to join the actual "walk",  we were still able to participate in the activities which led up to the walk. These activities of course stir up many mixed emotions; emotions of gratitude, graciousness, fear, strength and sadness.

As a person  living with a chronic cancer, one that must fight this cancer every single day for the rest of my life, I am in total awe of the support and kidness, of so many.

 Attending the Light the Night walk brings the palpability of the scores of lives that are touched by blood cancers to the forefront of my consciousness. It is always bittersweet, as the walk is not just for survivors; it is also in memory of so many, who have already lost their lives to blood cancers, and so many that are still hanging on, fighting the good fight.

Once again, I had too many names to put on the memory board; too many of my CML buddies were lost again, this year. It is also a bit diconcerting to see yourself on the wall, in the "Reflections of Life" booth, and finding out that the "Boy of the Year" in Boise had relasped was nothing short of heartbreaking; but seeing and feeling the support from so many, is so humbling that it  gives those of us fighters a second wind; a boost that fill our sails, and helps us keep on- keeping on, praying that someday a cure will be found.

It is the Light that shimmers and keeps us striving to live our best life and to help others do the same.
Another really important factor in attending the festivities, is to give thanks to my dear sweet Alisha; a young woman who works so incredibly hard for all of us. She goes above and beyond and is to be commended!

She is the one that made sure that those of us still fighting the good fight, had Survivor/Fighter shirts, instead of Survivor (only) shirts. Boise was the only chapter in the LLS to have these special shirts printed.

She went out of her way to see that this year I would not have to alter my own shirt, and that all of the other patient still in treatment  could join me; wearing our Survivor/Fighter shirts proudly.

We would no longer have to explain to other Survivors that we didn't have our treatment completion date...yet.; that we were still fighting the good fight, and had yet to reach remission. We could find each other and share encouragement, hope and faith knowing that we really, truly knew what each other was going through.

We now had our own "club"; the Fighter's Club! Not a club that any one would want to join, yet a club that can stand strong, and together, for at least one night.

Thank you, Alisha. I hope and pray that other chapters will follow your determination and have Fighter's Club shirts made for their patients, for next year.

It has been an honor to have so many people donate to the Leukemia Lymphoma Society in my behalf, and I thank each and every one of you from the bottom of my heart.

I am alive today because of people like you, and I intend to do my best to create awareness of the many lives affected by blood cancer. I will try my best to spread hope, faith and cheer and pray that my journey may be long, and inspiring.

We should never forget to Light the Night!!


Bricks for the Brave!!