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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!
http://pages.lightthenight.org/oswim/Boise17/mbieliktsc

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!

http://pages.lightthenight.org/oswim/Boise17/mbieliktsc

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 back...boo. 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.

Thursday, August 31, 2017

Home Again, Home Again, Jiggity Jig!

Our flight from New York to Boise was uneventful, and I slept most of the way. It was a long day, but we were fortunate to have neighbors pick us up at the airport, and take us to the market on the way home.

Since we had the "essentials", we wouldn't have to go to town for a few days. High on the priority list was rest, a blood test and a chest x-ray.

Home had survived our extended absence, and was a welcoming site. The garden that Joe had planted before we left was thriving and our bed was more than inviting! I can honestly say that we have the most comfortable bed that I have ever slept in; so in that regard, there is no place like home!

Being home, I was reminded how extravagantly we, here in the United States,  live. Our home is HUGE, in comparison to the average peoples' homes in Europe; that, coupled with the fact that we live on two acres, makes me feel almost guilty! We are so blessed to have the opportunities that we have here, in the States, but wonder if we are as happy, and live life as genuinely, as those that live with so much less? Food for thought....

At any rate, it feels good to be home, but I am pleased that I am still "dreaming" in the European landscape, I will miss being ensconced in the history, and architecture of all of the places that I have been.

I feel a longing to return and continue to explore places that are so very different from what I know. I knew that our trip was going to be amazing, but I had no idea how truly magical it was going to be.

When I was diagnosed with leukemia, six and a half years ago, I had to cancel a trip to Cabo San Lucas; I was devastated and wondered if I would ever be able to travel out of the country again. I also remember the first time that I flew to another city, close to home; I was terrified that something would go wrong and I would be too far away from home, and my doctors, to get help.

As time passed, and I became more and more stable, and used to the fact that living with cancer was my new "normal", I became braver, and more adventuresome. Planning this trip took a fair amount of faith, and inner belief, and strength.

When I first started planning the trip, that nagging little voice of reason kept popping into my head; what if............? Over and over, I squashed images of "something" happening, medically, while I was abroad, and finally I just threw caution to the wind, and put it in God's hands.

A few months prior to leaving on our five week journey, my pleural effusion kicked up into high gear. I wasn't sure whether or not I was actually going to be able to make it to Europe, but with the guidance of my oncologists, I did!

I had a few scary days along the way, and tried really hard NOT to think about how far away from home I was, and I tried my best to set my worries on a shelf.

Living with a chronic type of cancer should mean exactly that; LIVING! Squeezing every last drop out of the life you have, and pushing on; even when you feel you cannot. There will always be the days that your heart desires more than you body can deliver, and you must listen then, but there are also the days that your heart and soul triumphs over your body, and pushes you to take one more step.

I cannot tell you how taking this trip has made me feel. Spending time in Europe has always been a dream of mine, one that I thought I may never be able to fulfill, because of cancer. But cancer did not win this time! This trip has empowered me, it has given me  the strength to take on anything thrown my way. It has lightened my heart and filled my soul with the endless possibilities that this life has to offer.

I plan to continue to Dance and Travel My Way Through Leukemia!

Monday, August 28, 2017

Headed Back to the States!

I must admit that I have mixed feelings; on one hand, I am excited to be going home, I know I need the rest, and I know I need to assess the damage I may, or may not have done to my body, regarding CML, while I have been gone. On the other hand, I want this fabulous journey to continue; there is still so much to see and explore, that I just want to keep on going. I do not know what it is about being in a foreign land, but for me it was exhilarating, inspiring, fascinating and freeing.


Since the airport is quite a ways away, we knew that we would be taking a bus, from Victoria Street station. We also knew that we could either use the tube, or a taxi, to get there. The tube would not cost us any additional money, but there are stairs and suitcases involved, so we opted for a taxi; (because it is easier). We are already succumbing to the "American" ways! lol

Fortunately, there are almost always taxis parked right in front of our apartment; waiting for calls from the Marriott, on the corner. So we were able to just snag one of those, and be on our way. We stopped at our beloved "Paul" boulangerie and grabbed our last baguette sandwich for the road. Oh, how I will miss the food and lifestyle in Europe!

While driving to Victoria Street Station, I soaked in the scenery. I tried to grasp images as they flew by, hoping to forever imprint them in my brain. It wasn't long before we were at the bus station and we were able to get tickets on the next bus; leaving in about half an hour.




There was a room full of people that would be traveling to the airport on the same bus, and I wondered where they would be going. I was intrigued by a young girl, with a backpack and wondered if she was headed "home", after trekking through Europe; a dream that I have often had, but now fulfilled by staying in hotels, as opposed to hostels, while rolling my suitcase, verses carrying my wares, on my back! I guess that is one major benefit to traveling when you are old.

The bus was quite comfortable and offered scenery of places that we had not visited, outside the center of London. I enjoyed seeing the neighborhoods, the graffiti,  the markets and the other old buildings and churches that were in the outskirts, of London.







Once we got to the airport, we were pleased to find that they actually had a button to push, to call for wheelchair assistance; I imagine that I could have trudged into the airport and found my way, but I was truly exhausted and grateful for the "ride". As it turned out, it was quite far, and quickly getting through security  and baggage check, was a blessing. The gentleman that was pushing me was a cancer survivor, and said a prayer and gave me a blessing; I swear, that between all of the blessings, prayers and holy water that I have received, I am sure that my leukemia has stayed in check, during this trip, despite the medication holidays and interruptions that I have endured.








Everything thus far, has been a breeze, but what fun would that be? Upon arriving to the  Norwegian Air, check-in and luggage drop, we had our first luggage surprise. Keep in mind that we basically have the same luggage going home, as when we came here; no extra bags, and very few "souvenirs". Plus we have used a great deal of liquid weight, since we have been gone, so that should reduce our weight. We flew TO Europe on Norwegian.

We have pre-paid for our two large suitcases, and we each had a small carry-on, that fits under the seat and a "personal" item; Joe a backpack and me a market bag, which I put my purse in. We thought we were all set.

But NO!

Joe went to put our large suitcases, on the scale,  for a weight check, and the gal at the counter said, "No", I want to weigh your carry-ons. (?) Huh? And she meant that  she wanted to weigh every single thing that we were carrying, on the plane.

So Joe put his little rolly on and she said, it is too "heavy", we were SO confused. What do you mean, too heavy?? It fits right under the seat?  What she meant was that because of how much it weighed, we had to pay for the carry-on, regardless of the fact that it fit right under the seat! It was ridiculous, and we paid the $40 for the extra few pounds, that were in the carry-on, that fit under the seat. I strategically hid my "personal" items under my pillow, so as not to encounter another $40 charge.

This is the very first time that I have ever experienced "weight" being factored into a carry-on baggage, so consider yourself for-warned; I WILL be looking at luggage requirements and restrictions more carefully, in the future! It was crazy.

Despite the luggage complications, we were still wicked early, and had a lot of time to spare. We enjoyed our sandwich and patiently waited for our plane; I was looking forward to getting on the plane, so that I could sleep! We chose to fly to New York, as opposed to Boise, as it was direct, and I figured that breaking up the long trip would be wise, as far as really pushing my limits.

We were planning to stay two nights, in New York, as the day that we would be there, was our anniversary, and I LOVE New York!

The plane was on-time, and we boarded with no complications; our expensive carry-on, slipping right under the seat; despite its' extra few pounds..............oh, brother!

The flight was uneventful, and we arrived at LaGuardia Airport on-time, but our day was far from over. Once again, our hotel was not at this airport, but at Newark Airport, the airport that we would be traveling from, when headed to Boise. So, one more bus ride before we could call it a day.

This was a LONG bus ride that took us into the city, where we had to get another bus to Newark airport, and then the shuttle to the hotel. Normally, I would be taking in the sites of NYC, but instead, I crashed! I was just so, so, so tired. I really cannot believe that I slept, in the heart of the city.




I think we finally made it to the hotel around 11 pm, New York time; beyond exhausted, but in one piece. Ironically, when we arrived at the hotel, we saw that the Big Apple, country dance event was being held at our hotel. Something that I would have loved to have attended, IF I had the energy!

As I crawled into bed, I had dreams of going into the city, in the morning, and maybe even the dance event in the evening. I wanted to go to Central Park, and to have a cannoli and a piece of pizza, and in my wildest dreams, I wanted to go to a show.

Upon waking to a rainy morning, I quickly realized that my dreams were just that; dreams. There was no way in hell, that I was going anywhere! lol To say that I was "done", was an understatement. We called room service for breakfast, Joe went downstairs to bring up lunch, and I DID manage to make it to the hotel restaurant for dinner, which was a bowl of soup for me.

I felt like crap, and was beyond exhausted, and was a bit bummed that I could see NYC, and that it was our anniversary, and I could not enjoy any of it. I did however console myself with the memories of all that we had done, all of the places we had been and all of the experiences that we had enjoyed.




One more long travel day and we would be home. Home to sleep in our own bed, home to see if the garden was growing and home to recover from the most amazing trip of my lifetime.

Looking back six and a half years ago, to the day that I was diagnosed with leukemia, I never would have dreamed that this trip would have been possible. At that time, I did not know whether I was going to live or die, but I knew, that if I lived, I would find a way to continue to make my dreams come true.

I am blessed, and I plan to continue to dance, and travel my way through leukemia!

Thursday, August 17, 2017

The Phoenix has Finally CRASHED! But.......

Welp, I think that my prediction of sliding into home plate, in a heap is going to come true! Today is our last day in London, and I had many plans; none of which included spending hours in bed! lol




However, that is exactly what happened; I woke up, got out of bed, ate breakfast, made plans for the day, walked back into the bedroom, to get my clothes, took one look at the bed and I was down for the count! I swear I was only going to lay down for a minute; I think that turned into hours, and as Joe said, "The Phoenix has finally crashed!" lol I don't remember even crawling back into the bed, but I do remember waking up and wondering what the heck had happened; full well knowing that burning the candle on both ends, with chronic mylogenous leukemia, will eventually catch up with you!

Of course,  the first thing that I did was look at the clock and groan; I had "wasted" a good bit of the day, however,  IF I was able to drag myself up and out of the bed, it would be possible to do one thing that was on our list for the day, and that one thing would be to go to Kensington Palace, which is on the other side of Hyde Park, and not far from where we are.

I cannot say that my "nap" made me feel much better, and it was quite a chore to get up and out to Kensington Palace, but as usual, I am so glad that I made the effort. We were fortunate that they had handicap access, which meant I could avoid extra steps and stairs, which was much appreciated today.

As we wandered from room to room, viewing artwork, artifacts, including another awesome doll house, and clothing from ages gone by, I kept marveling at the fact that this is where Princess Diana lived, and raised her boys. Such a strange fact, and hard to envision. These places are so HUGE and museum-like, that it is hard to imagine any one actually "living" here.




can you imagine painting, paintings?



I am sure that their "area" was much different than what we were viewing, but still.....it just seems cold and daunting, although the grounds were lovely.

I thoroughly enjoyed seeing all of the old costumes, paintings, furniture and decor, but what I enjoyed the most was the tribute to Princess Dianna; they had a room that was filled with many of her iconic outfits. I was amazed at how just seeing those outfits, stirred the memories of seeing her in them. Like I said before, I was a HUGE fan!







I loved the photo they had of her in the room, and all of the quotes on the wall; as  we were leaving, we walked through an area that was covered in a lovely Princess Dianna wallpaper that was done in watercolor portraits, during various stages, in her life.










After leaving the palace, we were able to enjoy the gardens, and eat our lunch under an arbor of green. We enjoyed seeing all of the flowers and gardens that were designed and inspired by the memory of Princess Dianna; as this year, marked 20 years since her tragic death. The garden were so lovely, that you could almost see small boys running through them, playing.





 It wasn't long before they kicked us out; one of the drawbacks of our late start. Reluctantly,  we left the palace area,  I wondered if the palace was open to tourists when they were living here?

With thought stills rambling around in my head, as to what it must have been like to actually "live" in that big huge place, we left the Kensington Palace grounds and walked right  into Hyde Park; all of the parks in London are fabulous, and walking through them is really enjoyable, no matter how tired, or achy you may be.

This stroll was made extra special by running across a children's playground, aptly named the "Dianna, Princess of Wales Memorial Playground"; what I loved best about the playground was the sign that said "No cell Phone us allowed inside play area" meaning, "play" and interact with your children. Brilliant, wouldn't you say? It was a wonderful playground with a huge pirate ship, right smack dab, in the middle of it. A great place for little's to enjoy.


Another magical find was the Elfin Oak; the Elfin Oak is an enchanted, thousand-plus year old, oak stump, that has been transformed into the home of frolicking fairies, elves, gnomes, pixies and even imps! Unfortunately, it has been caged, but I am sure that the cage protects it from the likes of humans, either intentionally, or unintentionally, doing it harm.




After spending a fair amount of time familiarizing myself with all of the "hidden" gems, in the old oak stump, we continued our stroll towards home. We passed a Merry Go Round, which of course, lightened my step and my heart. It turned out to be a lovely day, despite my slow start, but as much as I hated to admit it, I was ready to call it good.


I think that dinner may just have to be desert; what a great way to end our time in London; a tribute to Princess Dianna Day and Gelato for dinner;  London is "in the books"!

Tomorrow we head back to the states; New York City, here we come.

Bricks for the Brave!!