Sunday, October 15, 2017

Light the Night 2017 Sadness

As excited as I was to have surpassed my Light the Night goal, to help fund cures for blood cancers, I found myself a bit sadder this year, than in years past. I am sure that one of the reasons I was feeling "blue" was due to the fact that I had just returned from an eleven day trip visiting kids, grand-kids, family and friends, along with a visit to my oncologist.These trips are always wearing, even though I enjoy them immensely.

That coupled with the fact that my grandest "pooh-bah", Alisha, was no longer heading up the Boise chapter of the Leukemia & Lymphoma Society. I understand why she is no longer there, and the gals in the office are still awesome, but she is still sorely missed!

Alisha was one to "fight" for patients like me, that are surviving, yet still in treatment; we are Fighters! We do not quite fit into the "Survivor" category, and she understood this, so for the past three years, she made certain that those of us still fighting the good fight, had Survivor/Fighter shirts for the walk. It looks like now if I want to "fight" for these shirts, I will have to take up the fight nationally, without my greatest cheerleader!

As we were walking around the park, checking out the event, I noticed a few changes, and was told that from now on, everything must be the same at every walk, per "National Standards"; hence the short sleeve t-shirts, despite the fact that we are in Boise in Oct.! Brrrrrrr...... And no "Reflections of Life" wall.

They had a new blow up "In Memory" igloo, where I met a sweet young lady named Abby; she was a volunteer, and her father is battling colon cancer. She asked me when I finished my treatment and what type of blood cancer I had; and there it was......on my shirt it said I was a Survivor.

I had to go into the song and dance of, "Well, I am actually still in treatment, and will be for the rest of my life, or until a cure is someday, hopefully found." I told her that in the past we had "Fighter" shirts and she wholeheartedly agreed that there should be a separate category for those of us, still in treatment. She said her Dad is fighting hard every single day, and they are all looking forward to the day which he completes his treatment and is cancer free; that is when they will consider him a "Survivor!"

I find it interesting that this sweet, young girl understands this concept better than the organization that actually hosts this walk, and I pray for her and her family, and especially her father to beat his cancer and to become a true Survivor!

As we were talking, just inside the "Memory Igloo," I found that I just could not write down all of the names, of all of the dear people we have lost, to CML. Every year my list gets longer and longer, and this year, I think partially because I was just so exhausted, I simply couldn't do it. It just made me too sad, and the list has  become too long; sometimes things are just too overwhelming, so I allowed myself this get out of jail free card, and accepted the fact that I was drawn to this igloo, so that Abby and I could meet, and give each other strength; for this I am grateful.

After leaving the tent, I continued to become more aggravated because I was walking around with a shirt that implied I was a "Survivor," just like all of the people who have lost their battles with CML would have been considered. Fact of the matter is that they were all "fighters" fighting every day, still in treatment, yet lost their battle to CML.

Yes, they survived living with CML, for a period of time, until they could no longer fight; they were "Fighters" in every sense of the word, from the first moment that they were diagnosed with chronic mylogenous leukemia, till the very end.

While I wholeheartedly believe in the power of the Light the Night event,  I do wish that they would recognize the awkward position which they put the patients that are still fighting their battle with a blood cancer, in. They do not understand how disheartening it is, to have so many people congratulating you on "beating" your disease, when in reality, you are still fighting for your life. This is not limited to those of us that live with a chronic blood cancer, but to each and every person that is in the throes of treatment, fighting every single day.

You can see the differences, in the eyes of people who have completed their treatment and are "cured' and those that are still fighting.

I am not certain that I have the energy to fight this fight alone, to get the LLS to start recognizing all of the patients that are still in treatment  for their blood cancer, as a separate category, as a "Fighter" category, but with the help of others, we may be able to get them to actually recognize the specific people, which they are fighting so hard, to help.

What do you think?

Thursday, October 12, 2017

Light the Night Success 2017

Once a year, in September, blood cancers have their turn in the spotlight. Fortunately for me, the timing is perfect; September just happens to be the month prior to the Leukemia & Lymphoma Society's, Light the Night Walk Fundraiser in Boise, which seems to fall the first week in October.

I have participated in fundraising, for the LLS, for the past four years. Prior to that, I had ZERO experience in fundraising of any sort. I look back now, to the first time that I set up my fundraising page, and set my goal at $250. I was concerned that I would not reach my goal, and tentatively sent out an email to my friends and family. I also went "public" and shared my fundraising page to Facebook.

Asking friends and family for money, for any reason, was quite uncomfortable to me, and when the very first donation was posted on my page, I was shocked and astounded, but also, very encouraged.

What I did not realize, was how willing my friends and family were to help me not only acheive my goal, but to surpass it; beyond my wildest dreams. I quickly reached my original goal and tentatively set it higher; it seemed that every time I set a new goal, it was surpassed.

I had so many people, generously donating to the Leukemia & Lymphoma Society, on my behalf, that I realized just how blessed I am. I set a meager goal, not believing in my ability to reach it, when in truth, with my tribe behind me as a group, all things are possible.

The love and support that each and every one of you shows, during this campaign, gives me the stregth to continue fighting chronic mylogenous leukemia, until a cure is found. If the cure does not come in my lifetime, then I will continue to fight until the bitter end, knowing that we all did our part, in helping to find a cure for blood cancers, some day.

I had no idea how much your donations would mean to me personally, but your support then, and throughout the following three years, has meant the world to me. You make my heart swell with pride, and I cannot thank you enough. This visual support gives me such a boost, but all of your friendships and verbal support, hugs and encouragement , every single day mean even more.

I often apologize for my nagging nature, during the month of September, but I also have come to realize that when you know someone with cancer, or another type of disease, or tragedy in their life, that you often do not know what to do, or how to help, or support that person.

I know that I often feel helpless, when I see others in need, and I don't know what to do, but contributing to a cause, that they believe in, often gives me a way to not only show my support, but helps me to feel as though I have done "something" to contribute to their plight; and make a difference. It makes me feel good; it makes me feel useful, and I hope that it shows just how much I care.

Understanding how "helping" makes me feel, I must also realize, that I shouldn't feel "guilty" for allowing others to do the same; for me. Fundraising is an extremely humbling experience, and to see the outpouring support that I have received fills me with gratitude and joy.

In 2014, we raised $1710, in 2015 our total was $1825, last year in 2016 we raised $2250 and this year, with the help of a dear friend, Lynda Wolters, who was recently diagnosed with a rare form of blood cancer, we raised $2515!!!!

That is a Grand Total of $8297; in four years!  That puts us at number 9, in the Friends and Family category for Boise's, 2017 Light the Night Walk; pretty impressive, in my opinion; you guys ROCK!
Boise actually surpassed their goal, as well; our whole group raised a total of $430,431; as of this date. Donations are still coming in, but this has been a record breaking year.

Thank you to all who donated to my 2017 Light the Night Fundraiser; your generosity will help to find a cure for blood cancers.

Until next year...........stay healthy and happy!

Donations for 2017

Friday, September 22, 2017

Gratitude:PCR Results After My Jaunt Through Europe: With Many Sprycel Breaks!

Grateful for every day!
Dunt-da-da-Daaaahhh.....The results are in! Despite missing more than four weeks of my life saving medication, Sprycel, while touring around Europe for five weeks (two weeks were prior to our trip, and all breaks were physician approved) my PCR results remain "STABLE"!!

My PCR results in April 2017 were .061, and upon returning in July 2017, they were .065!!! To say that I was shocked would be an understatement!! Do you think it might have been all of the holy water and prayers? Or just plain old, good luck!?

My journey with CML began in February 2011; I have been on varying doses of Sprycel for the past six-plus years. There have been ups and downs, good days and bad, days full of frustration, tears and anger, but mostly there have been days of being grateful to be alive.

When I was newly diagnosed, I had no idea what the future held; I read everything that I could find on CML, I asked every question that I could think of, and I searched for the "perfect" CML specialist, for me. I prayed a lot, I cried a lot and I put on my happy face for those I loved.

I looked for the silver lining, and my new direction in life. What I have found is an entire network of other people; who, like me, are living with a chronic cancer; I have found that despite the doctor's telling me, that I was "unusual", because I was so much younger than the typical CML patient, this is not necessarily the case. I know CML patients as young as four years old; CML does not appear to discriminate based on age, as  there are people living with CML, of all ages, shapes and sizes.

What I have come to realize is that despite the complications and side effects, which come along with the territory of living with a chronic cancer,  there is an underlying theme of hope and joy, from all of the wonderful people that I have met along this journey.

We all have good days and bad, some worse than others, but there is always HOPE and LOVE and SUPPORT; we are a community that truly cares about each other, and I am so grateful for each and every one of you who have added so much to my life.

Without my CML brother's and sister's I would be lost; we understand each other's hopes and fears; we cheer each other on, and commiserate when others are having a bad day. We understand each other and for this,  I will be eternally grateful.

Happy National CML Day!!!

Donations for 2017 Light the Night!

My CML Diagnosis was a SHOCK!

Bricks for the Brave!!