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!

Thursday, September 21, 2017

My CML Sister; Cheryl Hay,Still in Out Hearts!

I wrote this post right after Cherly passed; I can scarcely believe she has been gone three years! She will forever be in my hearrt!

I believe that the passing of CML sister, Cheryl Hay, on September 22, 2014 (Australian time) is no coincidence. I believe that Cheryl was sent to us to inspire and motivate us with her non-stop humor, courage and optimism, and that she left this world on National CML Day for a reason. That reason being to encourage us to do everything that we can to help raise funds to find a cure for this disease. One of the goals on her Bucket List is to raise one million dollars for research; this is the first year that we have done the Light the Night Walk for the Leukemia and Lymphoma Society and our goal is $1000; we raised $2000!

I have continued to raise money for Light the Night, every year and through the generous donations of friends and family, have consistently raised over $2000! There is still time to donate to this year's fundraiser!

National CML Day will never pass again without me, and hundreds around the world remembering the strong, young, optimistic, young lady that faced CML like a true warrior. She never complained, and faced each and every challenge with a big smile, and an even bigger dose of optimism; she shared her journey with us and taught us how to live, and die with grace.

Sharing her journey hits home to many of us that are currently living with CML; it is only natural for us to put ourselves in her shoes.  We love hearing success stories and hate hearing about battles lost; fact of the matter is that both are a reality, and that we will continue to hear stories of triumph and tragedy, for the rest of our lives.

What we can do is continue to live well, enjoy our lives’, tick off our Bucket Lists and help to raise money for a cure. We can do this in Cheryl’s honor and the honor for all of those that have also lost their battle with CML.

For those of you that are wondering, here is Cheryl’s journey, in her words:

“Just quickly for those of you whom do not know my story. I was diagnosed with CML in June 2012 and tried Glivec, Dasatanib and Nilotonib with no luck at keeping my CML under control. The TKIs either gave me nasty allergic reactions (a seizure being one!!) or just didn't work (at one point of time my PCR was 203%! The ideal range is 0.0%!!

In Sept 2013, I developed a huge swollen lymph gland in my neck and luckily my Haematologist was all over it when I saw him. After a whirlwind of days of tests he informed me that my CML was now in 'blast crisis' (it presents the same in the bone marrow biopsy as Acute Lymphoblastic Leukaemia (ALL). I had to commence chemo the following week. I would have chemo for 3 months and then have a Bone Marrow Transplant. There was no time to freeze my eggs beforehand so I will now no longer be able to have children. If I do not have this treatment I will die in a matter of months. Due to my uncontrolled CML journey, previous cancers, etc I am a 'high-risk patient of relapsing post BMT' Phew! Quite a lot of info to take on board!!

So originally I was meant to have BMT around Xmas, however I became very unwell with an infectious virus so it delayed treatment. Subsequently in March-another huge setback-BOTH anonymous BMT donors lined up for me FAILED THEIR MEDICAL TESTS!! What are the odds of that happening right??! So the BMT team had to re-commence a whole NEW search for a donor!
Anyway, today is the day that the process 'officially begins!' I still cannot believe after all the bumps, tears and set-backs that it is really happening!!!

Today I am having my Central Line inserted and will commence pre-BMT Chemo.

I will go to the Chemo Outpatients Department every day, up to and including Tues (when I will be admitted to hospital) Wed I have chemo but Thurs there is NONE (they call it a 'REST DAY"-sounds nice doesn't it??) MY BMT is Fri June 6th.

I'm feeling very confident about the BMT being a success against my CML. We don't receive much info about our donors obviously due to confidentiality reasons, however I do know that the donor is a young 24yr old Aussie male, and our tissue typing is a perfect 10/10 match! You cannot ask for better stats than that! Obviously I am still nervous but I am just so relieved my transplant is finally going to happen and cannot wait to beat leukaemia and be able to live life again!”

Once stating her story, Cheryl continued to share her journey; the good the bad and the ugly of it, right up until the very end; she fought long, she fought hard and now she is at rest.

There will be no more pain for Cheryl; I can only hope and pray that I have her sense of grace and peace when it is my turn.

Thank you, Cheryl; your light will continue to shine.

Please consider donating to our Light the Night Walk in Cheryl's honor.

Thursday, September 7, 2017

What's One More Thoracentesis?

As suspected, and expected, I have accepted (HAHAHAHA) the fact that I need to have another thoracentesis. No biggie; I am now a pro at having a needle/cather slipped between my ribs and into the pleural sac, around my left lung!

This is an outpatient procedure, which they perform at St. Luke's, in downtown Boise. The fact that they are always on-time, leaves me little time to fret over the procedure, itself. I have gotten to know the usual techs, due to the frequency of this procedure, so when a "new guy" showed up to do the procedure, I was wary.

I told him that Kevin had done my first procedure and he had "done it the best"! Just as I was touting Kevin's horn, he walked in to observe "Bill", from Florida. Bill and I were chatting about Florida, as the assistant was laying out the instruments used in the procedure.

I told him that he had big shoes to fill, and that the shoes were on the guy standing right in front of him. I asked if he was going to use the aerosol Lidocaine to start, and he said if I wanted him too, he would. I told him to go ahead and "Snap-it" it to me!

As Kevin and I were talking, I heard Bill, say, "OK, we are draining." Huh?? How in the world did that happen??? Typically I am told to "Be quiet", "Hold still", and "Spread your ribs." And then I wait and anticipate the amount of time that it takes for the worst part to be over; the needle to be inserted, and then removed, with the catheter left draining the fluid.

Bill had literally inserted the needle, pulled the sample tubes and hooked up the collection container without me even knowing that he was doing the procedure; HE is the new "King of the Thoracentesis Procedure!" It was awesome, and easy, and I prayed that once the tube and fluid were removed, that I would be able to breathe easier.

They removed 1.3 liters of fluid, which is actually the least amount that has ever been removed, and felt as though they had removed "most" of the fluid, that was there. Since we  all wish to avoid the extreme side effects of coughing and pain that can occur, after the procedure, due to a large amount of fluid being removed, we typically ere on the side of caution.

I am not sure exactly what I anticipated, as far as the amount of fluid they collected, as I was off of Sprycel for two, two week periods and several other days, while I was in Europe (oncologist approved). One one hand, I expected there to be much less, on the other, it concerns me that the underlying "cause" may not really be the Sprycel, but the fact that the lung is actually trapped.

I suppose it will be a wait and see how quickly it refills and a good conversation with the pulmonologist, before really getting to the bottom of it. With my lowered dose of Sprycel, I really do not believe that it is 100% of the cause.

And the beat goes on......

It is National Leukemia & Lymphoma Awareness Month!
Please donate to my Light the Night Fundraiser, if you can!

Sunday, September 3, 2017

Light the Night 2017

It is that time of year again; Blood Cancer Awareness Month, and the perfect time to start my Light the Night Fundraiser, for the fourth time.

I was diagnosed with a rare form of blood cancer, chronic mylogenous leukemia, on February 9, 2011. I having been "living" with cancer for six plus years, and keep holding out for the cure! I know that I am on of the fortunate ones, whose CML has thus far been treatable, but there are many whom I know which have not been so lucky.

I am holding out for the cure, which I pray will come during my lifetime. I know that I do not look like a typical "cancer patient", but the toll of taking an oral type chemotherapy pill daily is slowly wreaking havoc on my body. Many have told me that I "look great", which is wonderful, but what you don't see behind the facade, isn't pretty! lol

Blood cancers are the third leading cancer killer of Americans, and Leukemia is the most common cancer in teens and children. Amazingly, there are nearly 1.3 million people in the United States that are living with, or are in remission from leukemia, lymphoma or myeloma.

This is my one time a year to give back, and to fundraiser for the Leukemia Lymphoma Society's Light the Night Walk. Please join me in my efforts and donate to my fundraiser.

No donation is to small, or too big!! All donations are tax deductible and very much appreciated by me, and all of those that the LLS helps, and works tirelessly for, ever single day.

The Leukemia & Lymphoma Society is the world's largest voluntary health agency dedicated to blood cancer, and our chapter in Boise is the BEST!!

Please, donate if you are able, and thank you for supporting me in this endeavor, as well as all of the emotional support I receive from all of my blog followers!

Click below to donate!

Friday, September 1, 2017

Facing the Music; Blood Test and Chest X-Ray

Guess what was waiting for me when we arrived home from Europe? No, it was not a ticket to go It was my PCR blood collection kit, meaning I had better get my bum down to town to have my chest x-rayed, and my blood drawn; I am holding out high hopes that all of the holy water which I doused myself in, while in Europe, either cured me, or held my leukemia at bay.

Over the past four months, I have been off of Sprycel for two, two weeks stretches, with a lowering regiment of 140 mg of Sprycel, two days on, one day off vs 140 mg of Sprycel five days a week; these results will be interesting, and prayerfully good. I will have to wait approximately two weeks for the results,

The chest x-ray, on the other hand, I will be able to get a glimpse of, right after they take it, and will have "real" results, within a day. I pretty much know what they will be!

Fast forward:

A quick look at my chest x-ray tells me that I will be needing another thoracentesis; no surprise, but as usual, not really looking forward to the procedure.

I have no doubt become quite adept at functioning with a moderate pleural effusion. I pretty much knew it accompanied me throughout Europe, yet it did not slow me down; much. Neuropathic pain in my feet and legs, along with fatigue did, but I believe that I have become accustomed to breathing without the full capacity of my left lung.

I find it interesting that thus far, only my left lung is affected; for this I am truly grateful! I know many wonder why I do not jump the Sprycel ship, but it is really difficult for me to abandon something that is controlling my CML so well, with only one "major " side effect.

The detriment to being in CML support groups is that you see all of the negative side effects of other CML patients, on other drugs, and when I compare what I go through on Sprycel, to what they live with, on other TKI's, I consider myself fortunate.

I know that at some point, I will hit the wall, and be willing to try something else; but I am not there, yet. The current, next drug of choice, seems to be Bosulif. Of course, hearing and reading all of the side effects that people suffer, does not have me eagerly anticipating this change. It took me a good four years, to adjust completely to Sprycel, and to feel good enough to take our trip to Europe; and I want to go back!

I do not want to spend another three, four or five year period adjusting to a new drug.

I work closely with a pulmonologist, who has on more than one occasion, has said, "As long as you are comfortable, and able to live life in an acceptable manner, why change what is working and controlling your CML?" I suppose that I agree with his thought process.

It seems that I always reassess my options after a thoracentesis, so I guess that we shall see.

For now, I am anxiously awaiting the results of my PCR blood draw, and scheduling a thoracentesis.

Bricks for the Brave!!