This sure wasn't in my plan, but it is my journey!
To follow my story be sure to go to my first post as I am attempting to write this blog chronologically. Blog Archives are on the lower right hand side of the blog.
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.
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!
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 Leukemiaraise 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.
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!
Yesterday, Joe and I went to our local Leukemia Lymphoma Society office. We went to pick up my shirt for the Light the Night Walk. Last year our choices were; Supporter, In Memory and Survivor. I was a little disturbed by my choices at that time, because while yes I, and many others are "survivors", there are many of us that are still "fighting".
Living with a "chronic" cancer is a life long battle. Those of us with CML fight the good fight, every single day. Many of us will continue to fight that fight, for a very long time, while others with CML may face a progression in their disease, and either face a bone marrow transplant or death.
It is a cancer that is typically monitored every three months; sometimes you receive good news, and sometimes you don't. Point being, at this time, you are never "cured"; you live your life in treatment. You are not only a survivor, but a perpetual fighter, too. (There are currently some trials, for those lucky few that reach an undetectable state for two plus years, to try to hold remission, drug free.)
This, along with so many others that are still in treatment, caused me to believe that the LLS needed another shirt, another choice, another classification; Fighter! Afterall, who are we raising these funds for? We are raising the funds for the many people that are fighting blood cancers; both current and future victims. The Fighters of this disease.
We need a shirt for those who have yet to ring the bell; those who are still in treatment, those that are fighting for their life, in order to survive.
Because of the total awesomeness of our local Boise office and the gals that work there, we are the ONLY LLS office, nationwide that has Survivor/Fighter shirts, for our Light the Night Walk! I could scarcely believe my eyes when I saw that they had special shirts made up for those of us still in treatment....Could you believe it???? HOW AWESOME IS THAT!?!
Now, at the Light the Night Walk, all of us still in treatment will not be asked, " Ohhhh, how far out are you?" "Which cancer did you have?" or "When did you finish treatment?" Instead, it will be obvious that we are in the other club; the club that is still fighting the good fight. We are the ones that are still hoping and praying for a cure.
We are the ones that all of you are supporting; both monetarily and emotionally. We are Survivors AND Fighters and I thank our local office for recognizing us in this special way!!
Thank you Boise LLS; you guys ROCK!!
Please Donate if you can!! Every single penny helps!
Today, September 22, (9/22) is a special day for those of us living with chronic myelogenous leukemia. It is a day to be grateful for the opportunity to fight our daily battle with CML, a day to reflect and mourn those who have lost their battle with CML, and a day to cheer on those that are facing the much larger battle with CML, through a bone marrow transplant.
For many of us diagnosed with CML, our life long battle consists of daily medication; this medication is designed to control, not cure CML.
CML is a blood cancer that occurs when a piece of chromosome 9 and chromosome 22, break apart, translocate, and create a new chromosome identified as the Philadelphia Chromosome. This chromosome acts like an on switch for white blood cells; the normal range is between 4,000-10,000, when I was diagnosed, in February 2011, I had 385,000 white blood cells. While great strides have been made in managing this rare type of blood cancer, there is still no cure.
Since there is no rhyme nor reason, as to "if and when" CML will gain the upper hand and wreak havoc on its' host, I try to live each and every day to its' fullest, be grateful for the opportunity to still be alive, and hold out hope for a cure!
I am grateful for our oncologists who keep us alive and for those who are continuing their research to find a cure.
Living with CML is tough, but with your support and encouragement, I remain tougher!!
I have been living with Chronic Myelogenous Leukemia, a cancer of the blood, for the past four years and seven months. It is a journey that has led me down many paths with the most apparent and difficult path being my treatment, which is ongoing and comes with a plethora of complications which create a never ending roller coaster ride. Another path that I have traveled is the birth of my blog. My blog began as a way to educate myself and to keep my friends and family updated as to my condition and progress; it has morphed into a blog that is read worldwide, with nearly two million page views. Who knew? I never would have thought of myself as inspirational! Lol
Living with CML has also led me down a path that has allowed me the opportunity to meet many others living with the same chronic cancer; this is a blessing and a curse. The blessing part of this opportunity is the friendships that I have made near and far; when you live with a chronic cancer, with no “visible” signs of illness, most people can never grasp what living with a chronic cancer is like; knowing others with the same disease allows us to relate to each other in a manner that no one else would understand. The curse part of this path is the blatant fact that people die; people that you have gotten to know and share a very raw bond with; die. It is a painstaking reality that none of us, ever get used to.
This leads me to my favorite path; the path of helping others; since September is National Blood Cancer Awareness Month, I have collected Lego's for ill children at St. Luke’s Hospital, in Boise, for the past three years. It is my way of giving back to the small warriors that are battling this, and other diseases. Brick's 4 the Brave: Put a Smile on a Child's Face!
And last year, Joe and I did our very first Light the Night Walk, for the Leukemia & Lymphoma Society’s yearly fundraiser. We had an overwhelming response to our fundraising and were so very proud of all of you that stepped up to the plate to donate to our Light the Night Walk!! Without donations, no matter how small, I would mostly likely not be here today, to help raise more money, to find cures for Blood cancers. I would love to be able to surpass the $2000 mark to help find a cure, not only for me and my friends, but for anyone that currently has, or will someday be diagnosed with a blood cancer.
If you live in Boise, and you would like, you can join us on our walk and join our team. The walk is on Thursday, October 1, 2015, at Ann Morrison Park. I will hopefully have more details than this, soon.
So, if you are so inclined, please visit my Light the Night Walk Team Page and donate and join our team; Dancing My Way Through Leukemia! Joe and I will be walking for me and the many friends that I have lost this year, and all of my other friends' that are diligently fighting their own battles.
Lego’s can either be brought to a local dance, or mailed directly to me; Amazon is super easy, just be sure to add your name to the gift card, so that I can give you a great big thanks!
Being diagnosed with chronic mylogenous leukemia is no walk in the park. It is easier for some than others, and somewhere along all of our journey's, we are going to run across some one whose battle has become more critical than our own.
When this happens it is scary, not only for the person in crisis, but for all of us, as well. Those of us with CML want to know how, why and will it happen to us? I believe that it is human nature to feel compassion and fear, all at the same time.
Our hearts break for the one in crisis and shudder with fear wondering if we are next. I believe that this is "normal"; this is a bold reminder that CML is a very serious form of cancer, not to be taken lightly.
Do not feel guilty for questioning our disease in times like these, but do not allow your fears to weigh negatively upon the person in crises; the woulda', shoulda', coulda' is totally irrelevant and pointless.
What we can do is show as much support and positive-ity to our fellow CML'er, and their family as we can. We can pray like hell and ask for God to be with them, and their family through this difficult journey, and to restore this person's body back to a healthy state.
We can cry and lean on each other, stomp our feet and swear; if you are feeling scared or worried, know that you are not alone. It is "to be expected", it is "ok", it is "normal"; CML can be scary.
What we can do is continue to learn about our disease, and ensure that we are receiving the best care possible. We can follow our oncologist's advice, while listening to our own bodies' and we can live our lives' with as much joy and happiness possible.
We can continue to share our journey, our love and our support and do the best that we can through each and every day. Never give up hope and never stop believing.
I used to love summer, but CML (chronic mylogenous leukemia) has changed that. Now summertime means more days of feeling crappy! It seems that either CML, or the treatment for CML, makes the heat intolerable.
I still love gardening and the great outdoors, spending time at the local watering hole and enjoying outdoor activities with our grandchildren, but this can cause exhaustion and flu-like symptoms with minimal exposure to the heat.
Even getting into a hot car can cause a headache and nausea for me, and dancing in the summertime is always a challenge!
My number one line of defense in the summer, is to stay hydrated by drinking lots of water (sports drinks may be a good idea, too)and my number two, and favorite line of defense is my chilly pad, also known as "Nana's Rag"!
I do not go anywhere without my chilly pad; it is my constant summertime friend. I actually have several of them so that I can rotate them to avoid stinkiness; one for the garden, kinda' dirty, one for dancing, and one for "going out on the town", this year I think that I am, going to try the ball cap, too, and see if keeping my head cooler will help with the summertime blues!
It is not often that I endorse products of any kind, but I promise that you will be amazed at just how cool these clothes are, and how much they can help you beat the heat.
Keep in mind these signs of heat stroke during this time of year:
The major signs and symptoms of heat stroke include:
A little over four years ago I was diagnosed with chronic myelogenous leukemia. I had no idea what that meant, but I did know that cancer is never a good thing. While I had a million questions and scenarios whirling around in my head, the most prevalent question running through my mind was, "Am I going to die?"
Well, we are ALL going to die "someday," so my next question was "What do I need to do to live?" The answer to that question was that I would likely have to remain on a daily dose, of a specific type of chemotherapy, for the rest of my life. I can do that!
Simple enough, right? What I did not realize at the time, was just how taxing a potent medication can be on your body. My life-saving drug wreaks havoc, in many ways, and today I am going to discuss one of them.
This particular side effect of Dasatinib, otherwise known as Sprycel, is not life-threatening, but can be life-altering. It is a side effect that strips the color, not only out of my body; which is apparent through my pasty white skin, but out of my hair, too!
Yup, my whole head of hair is now void of any color! I am not sure whether it is white, silver, or some strange combination of the two, but after speaking with my oncologist and my husband, not to mention my internal conflicting thoughts, I have decided to let it grown out and show its' true colors!
This is going to be a process that is easier said than done. Every single morning I wake up and look into the mirror; and what I see is a bit frightening, yet a bit fascinating, too. I have always admired men and women that rock their gorgeous white/silver/grey hair and always wondered if I would ever be able to do the same.
Be careful what you wish for, right? I now have my chance; I have made my decision and I am just going to go for it! No blending, no dying, no more harmful chemicals on my head. I am not sure how long this process will take, or exactly how this is going to work or look, but I promise to share my progress with you.
I know that many people will think that I am nuts, and I may come to that conclusion myself, somewhere down the line, but for now, I am rocking the Pepe' Le Pew look!
It has been many months since I have written any thing; other than my mother's obituary. During this time, much has transpired. So much in fact, that I have nearly been rendered speechless.
I waffle between having nothing to say and having so much to say that I am fearful of becoming either a total recluse, or a completely opened up, fire hose. I am not sure which is worse!
Throughout this entire period of time, what I found most heart warming was despite my absence, the love and support that I felt from friends and family was what got me through each and every day. It also became very apparent that the amount of love and support came in many different ways, from many different areas of my life.
"Friends" become friends in many ways; some we are lucky enough to grow up with, others' we meet along the way. Some we have never even met face to face, yet they are there, cheering us on. These special friends, that we have never met face to face, are often people that share a special bond; for me, that bond is CML, also known as chronic myelogenous leukemia.
Another group of friends come from sharing a passion; My number one passion is my family, but my second passion is dance. My extended dance family has been a huge support, always there to share my laughter and my tears. This is my happy place, my place that transports me from grief to joy and I am so blessed to have found such a great, creative outlet, with so many wonderful people!
And of course, the love and support from family is nothing short of miraculous; even from long distances their presence can be felt; I don't know how many times just hearing the breath of a loved one, through the phone, gave me strength.
I also thank God for all my children; they were able to be with my mother, when I was not. They are strong, caring and wise individuals and I am not only eternally grateful to them, but so very, very proud of them, too.
And then there is my husband; the man that supported, helped and stood by my side through-out the entire three and half month ordeal. He encouraged, allowed and helped me care for my mother during the last six weeks of her life. He also jumped on board the monumental task of preparing my mother's home to be sold. This was all done in stride despite the fact that we both wished to be home. Once again, I am extremely grateful.
I am also grateful that so many understood my utter and complete silence, yet contined to send their loving support. I was so fragile during this time that even the kindest of words, with the best intentions, a touch, a hug or a glance held the possibility of sending me over the edge.
I understand now, how important reaching out to someone in a difficult situation can be, and that just because you do not hear from them, does not mean that they did not hear you. I also understand that just knowing that people care, gives you strength.
I want to thank each and every single person that sent their love, support and concern to me during this time and let you know just how much your words, cards and encouragement meant to me.
I may have been "silent", but I was listening; and I am grateful and blessed.