Thursday, June 11, 2020

Corona-virus and Chronic Myelogenous Leukemia: Overdue PCR

So here we are in isolation, warned about keeping ourselves "safe" during a pandemic. Our physicians are seeing us through video conference and our hospitals are inundated with people who appear to be contagious and very ill.

It is a strange time to be alive! We are witnessing the shutdown of the world and wondering if life will ever return to "normal".

I feel safe not seeing my oncologist, as my PCR results have been quite stable over the past two years, but I do wonder whether or not it is worth the risk of exposure, to go to the hospital to have my blood drawn, or not.

Maybe I will push my quarterly PCR test out a bit, say maybe a month or two, and hope for the best.


That is exactly what I did! My PCR test was "due" in April and I finally got brave enough to have it drawn yesterday. My last test result was .02% so I was not too concerned with the extra time between tests.

Heading out in public, for the first time since March 8, 2020, felt really, really strange; and a bit scary, too. My eyes feasted in all of the greenery and it felt so good to be out, although I was a bit apprehensive about entering the hospital, to have my blood drawn.

You see, I have a kit that is sent to me by Dr. Brian Druker's office at OHSU, and the only place that they seem to be able to deal with it is in the hospital blood lab.

So, the hospital it is; I put on my mask, pulled up my big girl panties, and headed in! I was immediately met, just inside the door, by a lady standing behind a table, covered with hand sanitizer, masks, and electronic thermometers; plus a sign-in sheet.

She checked my temperature and asked me where I was going. She had on a mask and gloves, but she never touched me. She asked me if I was "sick" or had any symptoms of a cold or flu. After confirming my wellness, she sent me on my way.

There were different colored arrows taped onto the floor and I was instructed to follow the "green-brick" road, all of the way to the lab; do not stop, do not veer off the path, go straight to my destination. I was very cautious and did not touch a thing.

In the waiting area, the chairs were all spaced maybe 4 feet apart and I was relieved to see only one, masked and gloved person waiting.

After checking in, I was instructed to sit. I sat on the edge of a chair, as far away from the other person as I could get. I kept my hands on my lap and didn't move! lol

Thoughts running through my head ranged from, "I pray I don't get sick," to "What a sad time we are living through." It was weird.

It wasn't long before I was called back to the blood draw area. I asked if it had been cleaned after the previous person, and was assured, that it had been. I sat down, being careful to not touch anything unnecessarily.

The gal that drew my blood was a frazzled mess; I do not know why, but she was. I pray that my blood makes it to where it is supposed to go!

She was careful to have her mask on when she was near me, but I watched her take it off and on numerous times, which made me a bit nervous, although, I can understand why she was doing it because I also wanted to take mine off. I feel for people who must wear them for hours upon hours, each and every day; they are uncomfortable.

Reach for the Sun, the Moon, and the Stars.
I kept thinking of all of the people in Asia that wore masks before the coronavirus, and it made me sad. With a mask on your face, you cannot breathe as well, it fogs up your glasses and most important is that people are unable to smile at each other. You don't realize just how important those smiles are until they no longer exist.

As I sat there, I also wondered when and if, we would ever be able to return to a mask free world. One that does not put people at risk.

It was a weird experience, but I am glad my blood is on its way! And I was glad to be home to my safe cacoon; once I got there, I washed my hands really well, put my clothes in the washer, and put on clean clothes.

It was a bit strange to be out in the world again, but it gives me hope, that someday we can all look back and say, "Do you remember when the coronavirus shut down the world?"

Until then; Stay safe, stay healthy, and remain hopeful and optimistic!

How are you dealing with treatment?

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Monday, March 30, 2020

This Is God Speaking Loud and Clear, to me!

It is Sunday, three weeks from the last time I was out in public. It is crazy to think that I have been in isolation for that long.

At any rate, I decided to tune into the sermon at Freedom Church, here in Gallatin. We have only been able to physically attend the church once but enjoyed the pastor and the feel.

After "church" Joe and I decided to go for a walk, as it was an absolutely gorgeous day. As we were walking along, I said to Joe, "I am guessing that God has gotten the world's attention, don't you think?"

He agreed. A little further down the road we noticed a small pile of "poop" and speculated as to whether or not it was from a raccoon, or maybe a bear? In typical "Michele" fashion, my mind went to raccoons, skunks and other cute critters,  which then led me to think of other, not so cute critters like possums and moles. I began to feel sorry for the possums and I may have even called them ugly, which was not very nice, at all.

As I trudged onward, down the road, and up the hill,  contemplating life, and how the coronavirus has affected the world, I noticed out of the corner of my eye some rustling in a field.

After further examination, I realized that a freaking POSSUM was running through the field, straight towards us!! I kid you not! A POSSUM!!!

That little sucked was just hopping along as if we had called him, and he was obeying.  He was going to prove me wrong and seemed to say, "SEE! I am CUTE!"

And he WAS; he was actually very cute.  He stopped just shy of the fence and sat there looking at us while I apologized and snapped his photo. It was the weirdest, most amazing moment. I have never seen a possum in the wild, before.

Talk about a sign from God telling me I may need to listen a little more closely to what he is saying and letting me know that he thinks ALL of his creatures are beautiful.

I believe HE is in control, HE has our back, and HE has our attention. I know HE has mine.

I think seeing that possum today will have me smiling for many days to come! It is often the small coincidences that have me "listening" just that much harder, trying to figure out my purpose, and what I should be doing.

Happy Sunday; God has our back!

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Thursday, March 26, 2020

Coronavirus Isolation: Time

Prior to the coronavirus, and the either mandated or self-imposed isolation, I often heard people complaining that they did not have enough "time".  Enough time to spend with their families, enough time to clean their homes, cook their meals, organized their pantry, or often just read a book.

There were many times that I heard people say, "If I only had more time......." Granted, many of the things that people would do with their "time" such as going on a cruise, or to Disneyland are currently off of the table, but if we dig real deep, I bet that each and every one of us will begin to discover something, that prior to our isolation, we wished that we had more time to do.

We may even discover that we enjoy a simpler lifestyle, one where we are not always on the go. We may reconnect with our families and ourselves and discover that we didn't even realize just how disconnected and frantic we have become.

Now is the perfect time to sit back and take stock of our lives. What is really important? And what is essential? What do we need? And what can we do without?

How will this isolation impact our lives moving forward?

For me, the most difficult aspect of this isolation is not being able to spend face to face time with my kids and grandkids. Facetime is a blessing, but it just is not the same as being able to reach out and give them a hug.

I miss their soccer games, their softball games, and their cheer. I miss hanging out and playing games, riding bikes, and listening to their perspective on life. I miss sharing the beautiful sunshine and fresh air, so I guess what I am saying is that I miss the close proximity that pre-virus allowed us to enjoy.
I certainly will never take that for granted again.

The uncertainty of our future ways heavily on my mind, and I wonder whether or not this will become a new normal, or a historical reminder of just how fragile we, as a society, actually are.

I wonder whether or not the reminder of our fragility will be deeply seated in our being, or frivolously forgotten?

I know that we are resilient, I know that we are strong and I know that we will survive. The question is "how"?

My greatest hope is that we will all be enriched by this experience and that we will live our remaining days in earnest; remembering the "time" that we all had so much "time" on our hands.

Stay Healthy, Be Kind and soak in every moment.

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Thursday, February 27, 2020

Life is Like a Jigsaw Puzzle!

As I sat at my puzzle board this morning, enjoying my first cup of coffee, I realized how tackling a jigsaw puzzle is so similar to how I tackle my life. Living with chronic cancer has caused me to become extremely creative. Sometimes I must solve life's challenges one piece at a time, while at other times, I am able to tackle it in “clumps” or “two-fers.”

It occurred to me that no matter the method,  the goal is always the same; put the pieces together to create a complete and beautiful picture. 

It also occurred to me that not every puzzle is solvable in the same manner. Each and every one is unique, with its’ own strengths and weaknesses. 

Some puzzles are easy peasy, while others can be quite difficult. This is true when living with chronic cancer, too. Some days are easy peasy, while others are much more difficult. Either way, I am up for the challenge! 

Fortunately, nine years down the road, I have many more easy peasy days, than difficult ones, so it has become easier for me, to tackle my puzzle of life, in a grand way; putting “chunks together” quickly, creating beautiful moments in time. 

These moments may be as minute as completing all of my laundry in one day, to the greater grandeur of moving thousands of miles to begin a new life adventure. It is the grand days that help me to push through the ones that are more difficult. 

On the difficult days, I resort back to taking life one “piece” at a time, knowing that even though the going may be slow, the result will still be the same; a beautiful, and complete picture. Sometimes, much to my dismay, I may even have a missing piece, or two, which is so representative of life; we do not always have all of the "pieces", but we still create a masterpiece.

This is what a tough day looks like, for me:

1. Get Up.

2. Maybe get dressed; maybe not.

3. Maybe eat; maybe not.

4. Snuggle with a blanket and heating pad.

5. Find a distraction; crochet, knit, watch a sappy movie, or attempt to solve a puzzle.

6. Try not to focus on the pain or nausea.

7. Whine a little. 

8. Laugh a lot.

9. Eat chocolate.

10. Drink something warm.

11. Accept the crappy day.

12. Laugh some more.

13. Go to bed and pray for a better tomorrow.

Not all days can be good days, and that rings true for everyone; cancer or no cancer. We all have struggles, we all have challenges, but if we learn to treat life like a jigsaw puzzle, one piece at a time, with all of the pieces creating a beautiful picture, then maybe we will not become so overwhelmed that we allow stress to creep in and add to our already difficult and challenging moments.

Be grateful for the easy peasy days and approach the difficult ones in whichever manner works best for you, and your current challenge. One step at a time, adding one and one and creating two, or putting together whole chunks of challenges quickly, thus creating your very own big, beautiful picture.

Also remember, that like a jigsaw puzzle, each and every single piece matters. Each and every piece requires thought and placement before it can become complete. When you first begin a puzzle, the pieces are scattered and chaotic, it is only after careful thought and consideration that they begin to take shape and order themselves; filling in the blanks and making sense.

Slowly, methodically they will begin to fit together and become whole. Life can easily become scattered and chaotic, it is how we deal with this chaos that dictates our existence. Strive to give all of your pieces the attention needed to live your best life.

And keep in mind, you do not need to complete the entire puzzle alone. Puzzles and life are so much more enjoyable when shared with others!

Remember that it will not always be easy, but hopefully, it will always be worth it!

Happy Day, and blessings to all!

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#chronicillness #cancer #chronicmyelogenousleukemia #Bosulif #leukemia #lovemylife #cml #sideeffects #puzzles #cmlspecialist #grafteul #thrivingwithleukemia #livingwithcancer

Originally published at

Sunday, February 9, 2020

Living with Chronic Cancer is Tough! Happy Nine Year Cancerversary!!

February 9, 2011
Nine years ago, I was diagnosed with chronic myelogenous leukemia. At that time, I knew nothing about blood cancer and didn't know whether I would live or die.

Nine years down the road I am still fighting this disease while continuing to learn whatever I can about CML, while advocating for myself, and others also living with CML.

All that being said, nine years down the road, I am happy to say that I have adjusted well to my "new normal" and that living with cancer is "just the way it is."

My journey, like most journeys, has been full of twists and turns. Good days and bad days, and ones in-between, too. I do not often wonder what my life "would have been" if I didn't have cancer and am grateful for all of the things that have happened "because" I have cancer.

February 9, 2020
I find life is weird that way; we either accept our fate and embrace it, or we don't. I am definitely a make lemonade type of person, for which I am grateful every single day.

The past two years, since switching from Sprycel to Bosulif have been by far the best years since diagnosis.

I believe that is a direct correlation to the change of medication. I was having my left lung drained every two weeks at the end of my Sprycel run, and despite there being a small effusion that remains, I have not had one thoracentesis in over two years.

I have more nausea, but less fatigue, muscle, and joint pain and almost no neuropathy; I call this a win. This coupled with the fact that I have had the best PCR results in nine years, and I am a happy camper.

As a matter of fact, three months ago, my PCR actually dropped to .0094!!! I have never hit the double zero mark before, and I was elated. You would think that having your blood tested once every three months, in order to assess the burden of cancer on your body would become routine; no big deal. Right?

Wrong; it is, and always has been A VERY BIG DEAL!! There is always hope and trepidation wrapped around those vials of blood. I always send them off with high hopes and good juju. Sometimes I am elated with the results, other times I am completely deflated.

So much to be grateful for!
This past year has been cause for celebration time and again, as every single test result was lower than the previous one; it seemed as though I might even become undetected, someday. This was something that we had taken off the table several years ago, as I was "stable"; my PCR results seemed to have hit a plateau.

And then came the switch to Bosulif and they began a downward trend, much to my surprise!
I had no idea just how "cocky" I had become; I assumed that my PCR results would just continue downward until the could no longer detect the BCR/ABL in my blood.

Wrong again! My latest test results actually came back higher than the previous .0094%. I was once again back to single zeros, at .02%  I was devastated!

Now I understand that that is an acceptable number, and more in line in what I am used to, but I am not going to lie; when I saw that test result, I just felt like crying. I had a pit in my stomach and it was hard to take a breath. I could not speak.

If I am lucky, I will make it to 95 like Aunt Helen!!
It was a feeling that surprised me, and I could not shake my disappointment. I know that in three months' time that a new test will replace this past test, but I also know that I will be wondering whether it will go up, or go down until the next results are in.

Hence the life of living with chronic cancer, I suppose. It is a reminder to be grateful every single day and to take nothing for granted.

I realized that day that no matter how "comfortable" you become, no matter how well you have adjusted to your "new" life of living with chronic cancer, there will always be that small voice asking "what if"? I guess that deep down inside, there will always fear of the unknown.

But for now, I am going to celebrate my nine-year cancerversay with a joyful spirit and a grateful heart.

I am so happy to be alive and pray that my good fortune will continue. I will continue to do my part.

1. Take my medication as prescribed.
2. Have my blood monitored every three months.
3. Adhere to my CML Specialists' recommendation.

And all of the other things that are required to live a healthy life.
I am beyond grateful to be nine years down the road from first hearing the words; "I do not know how to tell you this, but you have leukemia."

What a ride it has been!

Happy Cancerversary to me!

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Bricks for the Brave!!