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Tuesday, February 19, 2019

Wow!! Best PCR Results in Years!

Ragged Point 2019
I am seriously in SHOCK! And I cannot wipe the smile off of my face!! A year ago my PCR was .976%, due to a medication break from Sprycel, due to rotator cuff surgery. The pleural effusions just got to be too much, so I was taken off of Sprycel and put on Bosulif.

I admit that the first six months on Bosulif were rough, so rough I wasn't sure whether or not I would be able to tolerate the medication. Through trial and error, Zofran and CBD oil, I found that taking 200 mg of Bosulif, twice a day, with food, works for me.

I started to see a slow decrease in my PCR and today, one year later, my PCR is .037%!!!! Say what??? I just cannot believe it! I saw my oncologist just a little over a week ago, and we both agreed that I would probably always hover just below .1% and that that was "OK".

During the past eight years, I had high hopes of reaching an undetectable state, but somewhere along the line, I accepted that it was just not in the cards for me. HOWEVER, today's results, who knows!!
I find it quite interesting, that after eight years of testing my blood every three months, I am still like a kid at Christmas, anticipating what might be in the box.

Today's gift has me smiling from ear to ear, doing the happy dance, all over the house!

Happy 8 Year Cancerversary to me!

Thank you, God, and Thank you to all who love and support me unconditionally. For those of you in my shoes, I pray for great results for you, too!

FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familyispriceless #hopesanddreams  #gratitude  #grateful

Tuesday, January 8, 2019

Whirlwind Life with CML!


What a crazy busy time in life! I am so grateful to be here, living it!!!

After returning from our trip in October, we had about three weeks to get ready for our next trip south. That meant cooking a turkey, buying and wrapping all Christmas gifts, and packing for a long haul!

My youngest son was graduating from college on December 8th, which meant we had to be in California earlier than normal. What a proud day! He graduated with high honors in technology security and I am anxious to see what he does next.

Since we have family and grandkids spread out from Orange County to the Phoenix area, Christmas time always means a lot of time in the car; going hither and yon. Of course, I would not miss the time I spend with each and every person, for the world!

Christmas is always bittersweet as the "glue" is no longer here;
we all miss our parents tremendously. Fortunately, my brother and his family live close to my daughter, so we have started a new tradition of spending Christmas together; much more subdued than we are used to, but still very sweet.

Once we "wrapped" up Christmas and New Year's we headed to Palm Springs, which is always a joy. More family and friends will fill up our month and it will be over in the blink of an eye.

This year our Air BnB is nestled right near Indian Canyons, which is just perfect!

Hopefully, I will remain well enough to hike the canyons, walk the strip, hit the library bookstores, visit all my peeps, and puzzle and game myself crazy!

Here is to a Happy, Healthy, Joy-filled Year, full of adventure and wonder!

FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com
#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familyispriceless #hopesanddreams  #gratitude  #grateful #christmaswithfamily #friends


ugly sweater cookies



track meet!


Vegas


Graduation Lunch: son, daughter, grandson


CML Buddy!




Saturday, December 1, 2018

PCR Update and Gratitude

Hopes and Dreams.....
What a whirlwind my life has been! I am so fortunate to have been able to fulfil my dream of visiting my roots. Of course, the highlight of our trip was reconnecting with family. Feeling the love in our hearts, despite the many miles between, us was remarkable. I can hardly wait to get together again.

Making the effort to take trips like this is not easy; there is much planning prior to the trip, and travel is fatiguing on this old bod! But what I receive in return makes all of those challenges so worth the effort.

My oncologist's words, replay over and over in my head, all the time. This is what came out of his mouth, when I asked him if it was alright to go to Europe a few years ago, "Of course! Isn't this why you are fighting CML so hard?"

I mean, duh! Living IS why I fight so hard to keep my CML in check. It is why I see my oncologist every three months for testing, and to monitor the damage that can occur to my other organs, from the potent medication that I take. It is why I endure the side effects of my disease and its' treatment. It is why I push through the pain and fatigue, and try my best to manage nausea.

Living with chronic cancer definitely has its ups and downs, but "living" is the key, and I plan to continue to do that, to the very best of my ability.

beautiful in its' broken-ness
Hopes and dreams make the challenges easier to endure, and the memories from past adventures make me smile; they give me the motivation to continue to push myself towards more adventures, towards living my life. And they keep me company, during the recuperation period!

Currently, my pcr results show that I am in stable MMR at .072, up a tad from the previous results of .06. I still have a "small" pleural effusion in the left lung, and I am still adjusting to my newish medication, Bosulif.

I wish my pcr was lower, I wish I could breathe better, I wish I didn't have the nausea and diarrhea associated with Bosulif, I wish I didn't have nerve pain and jelly legs, I wish my bones didn't ache, and I certainly wish that the fatigue would go away, BUT I am grateful that my spirit is not broken, and that I am able to continue to enjoy all aspects of my life, even the down days; I look at those as payment for the good ones, and that is OK!

When I am not travelling, visiting family or enjoying some random activity, I love to be a voyeur into the lives of others; I take great pleasure in sharing others experiences, no matter how mundane.

Seeing the beautiful Christmas decor, or toes on the sand make my heart sing, and this is why I share with you.
I hope you enjoyed my travels to the northeast, and I hope that you will share your adventures with me!

Fight on; life is a gift!

FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness  #bebrave  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familyispriceless #hopesanddreams  #gratitude  #grateful

Sunday, November 18, 2018

Boston Red SOX vs Dodgers; Tonight??

The Bleacher Bar!
Well, the end is near. We must turn in our rental car today, and fly out of Boston tomorrow. We will be staying at the same Ramada Boston that we stayed at, at the beginning of our trip.

That means, drop off the car at the airport rental lot, take that shuttle to the airport, get on the airport shuttle to the hotel, check in, take the shuttle to the train, and head downtown!

And why you might wonder are we going downtown? Because my husband is a Dodger fan and I am a Sox fan! That is why we are headed to town!

It is a total fluke that we are in town tonight, and no, we do not have tickets to the game, BUT the Bleachers Bar has a window, that looks right into the stadium. Just being near Fenway Park is good enough for me, under these circumstances.

Getting off the train and heading towards the stadium you can feel the electricity and excitement in the air. I am grinning from ear to ear; it is thrilling, just being there!

Once we get to the bar, I see there is a long line to get in; no surprise there! Joe went and got into the line and I meandered around. I saw a guy standing at an open door, which looked like it could be the exit to the Bleacher Bar, so I went up and asked him if it was.

He said yes, and I asked him whether or not he thought we would make it into the bar by the time the game started. He asked where Joe was standing and said yes, he thought we would.

We continued to chit chat and I told him we were from Boise, and that I was a Sox fan and my husband was a Dodger fan, and that we had planned this trip six months ago, with no idea that the start of the World Series would be tonight!

I also told him that my son was a huge Sox fan and that I almost felt guilty that I was here and he was not.

About that time, a guy came over and whispered in his ear, and gave him some money. I heard him say that they had six in their party. I looked at my door guy and said, "I know I am not nearly as important as THAT guy!"

He laughed, told me to go and get my husband and he let us in the back door! I went and poked Joe, and said, "Come on," and he said, "What, are we getting in the back door?" I just said, "Just come on." lol

And so, we waltzed in through the back door, and right in front of us was the big window that looked right into the ballfield.

Now, normally I hate crowds, and it was crowded, for sure, but on this particular night, I LOVED the crowd!

People were friendly, excited and polite; I even found a few Dodger fans for Joe!

Of course, now that we were inside the bar, the next matter on the list was food; I snaked my way through the crowd to the front entrance and put our name on the very long list!

On the way back to Joe, I stopped at the bar and grabbed two beers; needless to say, he was very happy to see me when I returned! lol

My new friend!
While we were waiting for our table, talking to fans from both sides, someone tapped me on the shoulder and asked, "Would you guys like to join us?" Who says having a cane is a bad thing??? hahaha

It was a couple and their son and they had two tickets to the game; Mom, being Mom, gave her ticket to her son. I totally get that!

So we joined them, had some dinner and the fatigue began to set in......I quickly realized that we would be watching the actual game from the bed in our hotel room, but that was OK, I at least got to join in, in the pregame buzz!

What a great way to spend our last night in the northeast!

On a side note; we all know that the SOX won the series! Whoo Hoo!!!!

FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familypriceless #maine  #middleton  #lobstershack #lobster #lighthouse #portlandmaine











Tuesday, November 13, 2018

Moose in Maine!

This is a Zoo?
Today is our last day in Portland, Maine. Since we have little hope of running into a moose in the wild, we decided to go the Maine Wild Animal Park. It is a bit north, which will allow us to enjoy more fall foliage on the way. You see, I get just as excited about moose, as I do horse-drawn carriages full of Amish families!

Once arriving at the park, there was no one in the ticket booth, so we just walked on through, thinking we would just pay when we saw someone working in the park. The only employees that we ran into were maintenance workers and people feeding the animals.

The animal park was set in a forest which made walking around, smelling the pines, a great adventure. They had a vast array of animals, that were either injured, humanized or orphaned. I loved the porcupines and the albino racoon! Of course, the large cats and bears were also fun to view, as were the owls and falcons.

BUT! The most exciting animal was the moose! Two bucks and a baby. There were signs on the bucks enclosures that said that they were "irritable" due to the mating time of year, but I found that singing "Hush Little Baby" to the moose that was lying down, put him right to sleep! hahaha It was SO funny.


As adorable and impressive as the big bucks were, Maggie, the baby moose was the star of the show. She was the little moose, who was abandoned and befriended by a German Shepard. You may have seen the video. She was only 25 lbs. when the Maine Wildlife Park picked her up, and today, four months down the road, she is nearly 200lbs!

Look how BIG she has grown?
She is absolutely adorable, and ever so friendly, which unfortunately for her means a lifetime in an enclosure, as she is too familiar with humans now, to be released back into the wild. While this is a bit sad for me, if they had not taken her in, she would not have survived. She was a kick to watch!

All in all, it was a lovely way to spend an afternoon.

On our way back towards our hotel, we stopped in old town Portland and had a delicious sushi dinner. Oddly enough, when I planned this trip six months ago, I thought that I would eat lobster till I was sick, and that just has not been the case. We literally only shared one Maine lobster the entire time we were here!

After dinner, we found a local bakery where we bought some more Whoopie Pies to bring back to the room. Tubby time and jammie time before 7 pm; MAN am I a Whimp!!

Tomorrow we head back to Boston for one night; I am hoping to have the energy to enjoy a bit more of Boston before we leave.

Maine, we will miss you!


FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familypriceless #portlandmaine  #mainewildlifepark  #sushi #travelling #moose

Sung this big bad boy to sleep! lol














Wednesday, November 7, 2018

Simple Simon in Maine?

Finally! Red Leaves!
We started off the day at "Simple Simon's" a fabulous breakfast and lunch diner; breakfast only on Sunday, which is perfect for me, because it took me until noon to get moving and out the door.

I have resigned myself to the fact that CML and my medication has permanently moved me into a late afternoon, evening person as it just takes me until noon to get moving. On the upside, the early birds have already caught their worms and many times lines and crowds are at a minimum.

After "breakfast" we headed out to Bradbury Mountain State Park, just outside of Freeport, Maine. It was our hope to finally see some fall color! We have traipsed from Massachusetts to Pennsylvania, to Rhode Island, through New Hampshire and now Maine, and practically everywhere we have gone, the leaves have been GREEN! Lol

Granted, we have seen random red, orange and yellow trees, but we have mostly seen green trees. On our way to Bradbury Park, we did start seeing fall colored leaves, and once we started hiking, we saw more. Unfortunately, some of the beautiful leaves had already hit the ground, but once we reached the summit, the view did not disappoint! It was stunning.

While we were there, I noticed two women carrying birch bark. Being the crafty, sort of nosey person that I am, I could not help but ask what they were going to make from the birch. They told me that they were going to make small boxes. I told them that I had seen such boxes, and remarked what a lovely "souvenir" the birch bark would become. They were from Germany, and we had a lovely little visit.

We then decided to continue around the Boundary Trail, which was a picturesque walk through the woods. It so reminded me of growing up in Marion, Va. One of the most impressive things that we saw, along our way, was a rock wall, that extended for several miles; we wondered who had built it, and how long it had been there.

After a while, I began to wonder when I would see a sign for the parking lot! I was quickly becoming tuckered out! Lol I heard a noise behind us and saw two young men catching up to us. We decided to let them pass, as I know, that I am VERY SLOW! That is when I heard them say, "I sure hope that this is the right way to the parking lot" to which I replied, "It had better be, or you are going to see an old lady cry!" Lol

Alex, Me and Christopher; my new friends!
They stopped, turned around and cracked up! We began chatting and learned that they were from Manhattan, and had recently bought a home in Connecticut. Christopher was a horticulturist, creating gardens in Manhattan! What a fabulous, creative was to bring green into a city full of concrete; he plants gardens on rooftops and terraces of high end "apartments." He was actually toting a few small plants home from Maine, to plant at their home in Connecticut, as a tribute to their trip, and one year anniversary.

I am not sure what Alex did for a living, as we ran out of trail, but I am grateful for their company, as they made the last half mile of our trek fly by. Such a pleasure making new friends!

Best Clam Chowder!!!
After leaving the park, we decided to go to dinner. I knew if I went back to the hotel first, that I would never leave again! Tubby and jammies were calling my name!

We decided to go into "old Town Portland" and find a place to eat. We ended up at DiMillo's On the Water. The restaurant is actually on a boat; a docked boat, but it was right on the water, so we had a fabulous view of the harbor. As we were sitting there, I looked up and guess who was sitting at the next table???

It was our new friends from Germany! Hahaha....we waved and said hello, and they were able to show us photos of the little box that they had made, and what they were hoping to make with their new found birch. I just love how the universe makes me smile!!

We finally had some GREAT clam chowder; thick and creamy, with tons of clams and the perfect amount of seasoning. Joe had a fried sampler platter with haddock, shrimp, clams, calamari and scallops, and the best cocktail sauce ever!

I should have stuck to the original plan and just shared his plate, but not wanting all of that fried food, I opted for Lobster Mac n Cheese! Because all of that cheese and cream was SO much better for me than the fried food, right?Lol  I was only able to eat about an 1/8th of the dish. I know that this will reheat in our microwave and be just as delicious tomorrow, and the next day, and the next!! So I vote, Lobster Mac for the win.


GREAT food, GREAT service and GREAT ambience!! I just love when we make GREAT choices!

Time for bed, tomorrow is another day!

FaceBook: CML: A Place for Hope and Humor
Instagram: https://www.instagram.com/cmlmichele
Email: CMLMichele59@gmail.com

#chronicillness  #bebrave  #chronicmylogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #family #familypriceless #maine  #demillos  #bestclamchowder #lobster #lighthouse #portlandmaine









Bricks for the Brave!!