Wednesday, October 25, 2017

PCR Results, Thoracentesis and an MRI

It has been a busy few months including a trip down south to visit kids and grand-kids, and dear friends and family. Prior to my trip I had a thoracentesis followed by a CT scan which indicated that my lung is currently not trapped; which is a good thing.
Belated Birthday Lunch!

Early Birthday Lunch!

The fact that the pleural effusion in the left lung, just will not "go away" and "stay away" I will most likely be giving Bosulif a go, real soon; it is so hard to abandon something that is working so well to control my leukemia, with minimal side effects, for the unknown.
So that is the update on THAT!

Next up is my right shoulder; my rotator cuff was injured two plus years ago, by a dancer. Last year I tried physical therapy and this year, while lugging my suitcase down a cobbled street in Paris, I believe that I "injured" my bicep, yanking my suitcase out of a cobbled pothole.  I heard the "pop", but it seemed fine the next day, and throughout the rest of the trip.

Once home, my right arm started to give me fits of pain and continually kept me up all night aching; I finally relented and had an MRI. What a strange machine; so hard to believe that all of that noise can create such amazing images. Thankfully ear plugs and headphones with music, made the time pass quickly.

The results, as expected, were not good and after seeing an orthopedic surgeon, surgery is scheduled for Oct. 27th. Due to my persistent pleural effusion, and the leukemia, I will be forgoing the typical "nerve block" and spending the night in the hospital, just so they can control the pain, and keep an eye on my vitals.

I do not know how they will control the pain, as I am not good with medications, and since Hydrocodone/Vicodin, seems to be the drug of choice, and I cannot stand it (it keeps me awake for hours, does nothing for the pain and is agitating to me), I am hoping that the ice machine will not only keep the swelling down, but will also help with the pain.

Needless to say, I am dreading this surgery; and while I have high hopes that it will be successful, I also have a fear that it will not. I truly believe that my muscles and tendons have been compromised by two rounds of the antibiotic Cipro, taken many years ago, which may interfere with the success of the surgery.

Of course we cannot know this until my surgeon actually opens up my shoulder and takes a look inside. I will remain hopeful and optimistic and pray that it is better, than it is now. I would really LOVE to have full range of motion and use of my right arm again!

So, next on the agenda is getting through pre-op, and trying to figure out how to live as a one armed bandit. I did ask about using my hand and wrist to knit, and/or crochet, and I believe that it will be a good way to keep the circulation flowing and the wrist from locking up, not to mention a way to keep my sanity!

Wish me LUCK!

PS: My PCR results came back at .06%!!!! Holding strong on another medication reduction!

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

Bricks for the Brave!!