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!!


Saturday, October 10, 2015

Bird of Hope

This morning my husband called me to the guest room to look out of the window, at all of the "new birds" on one of our feeders.  There must have been thirty to forty birds voraciously chowing down on the birdseed.

They were quite beautiful; yellow, gray and black feathers with a stubby sort of beak. We watched them flutter around, and listened to them chatter for several minutes, before heading downstairs.

Just as we reached the ground floor we heard a loud thump! We instantly knew that one of those birds had hit a window, and had hit it hard. We went out the back door and looked around; my husband saw downy feathers flying and quickly located the little bird.

He reached down, picked up the little guy, whose foot was stuck between the deck boards, and cradled him in his hands. He was limp and unconscious and we saw blood coming out of his open beak, and where his beak met his head.

We started to stroke his head and breast, and his eyes began to flutter open; eventually, he held up his head. His poor little heart was beating so rapidly that we thought for sure he was going to die.

As the minutes ticked by he seemed more and more alert, yet his beak remained open and full of blood. Within five or so minutes my husband set him down, in a flower basket. At first, he seemed a bit unstable, but eventually, he was able to hold himself upright.

I sat with him, petting his head for ten-ish minutes as he vacillated between dozing and alertness. I did not know what to do, so I said a little prayer; I prayed that God in his wisdom would heal this little feathered creature and allow him to fly free again.

I wasn't really bargaining with our Lord, but there was a small part of me that was pleading with God to reassure me that he was still here; that he truly cared about every one of his creatures, both large and small, and that no matter what, he was with us. I wanted the reassurance of witnessing a small miracle.

I know that may seem selfish and that I may sound a bit like a doubting Thomas, but sometimes an extra sliver of hope comes along,  just when you need an extra boost. Sometimes you DO get what you ask for; so I asked.

I decided to go inside and see what the little guy would do; I was still torn about whether or not to try and clear the blood from his beak, or to leave him alone. After a short time, I went back outside; he was still sitting in the flowers and I once again began to stroke his head and body, looking to see if I could see any other injuries. I also grabbed the camera!

While I was taking a few photos, I noticed that one of his friends had joined him. A second bird was there, sitting between the baskets, just out of my sight, keeping his friend company. I also noticed a single female, sitting in the tree, keeping watch. It was so touching to see how even the smallest of creatures had such compassion and concern, for their fellow feathermates.

I once again came into the house; the female bird flew closer and kept watch. The little guy that hit the widow began to shake his head; he began to rub his beak on the flowers; we figured that he was trying to remove the blood. He continued in this manner for a while and then became still. I wasn't sure whether he was worn out; or dead.

I went out one more time and saw that his eyes were closed; I stroked his head and he opened his eyes. I saw that he was able to shake bloody birdseed from his beak and that his beak was now closed; I saw this as a hopeful sign.

I stepped away and the bird from between the baskets flew to the tree, the female flew to the tree, and then our little miracle bird joined them! I was elated and full of awe; this little guy had my husband not picked him up, would likely have died.

I  truly feel as though I witnessed a miracle and was sent a Bird of Hope this morning; I Praise God, Thank God and am so grateful to be here, to share this miracle with you!

FaceBook: CML: A Place for Hope and Humor

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Bricks for the Brave!!