Saturday, April 22, 2017

Let Us Suck the Fluid from My Pleural Sac!

I few months ago I hiked way down here!
After being gone for several months, we have finally returned home; it is the end of February and there is still snow everywhere! Maybe we came home, too soon?

As nice as it was visiting with our friends and family, it is always nice to be back in our own bed, in our own space.

Next on the agenda is to have a thoracentesis for the excess fluid that has decided to call my left pleural sac home. This is something that can occur while taking Sprycel, a medication for chronic mylogenous leukemia.

Pleural effusion seems to be the most annoying of the side effects of Sprycel, for me. This is the second time that I am having a throcantesis, in six years. The first one was actually quite easy; they did the procedure and I left feeling great.

This thoracentesis did not go quite as well. I cannot complain about the actual procedure, while it was a bit uncomfortable, it was not what I would consider painful. I knew that I had a very large pleural effusion and was prepared to see a lot of fluid draining into the container on the wall.

What I was NOT prepared for was the effect it would actually have on my lung and on my body. After the first container was full, a new one was attached to the vacuum. As it reached the 1.6 liter mark, I began to cough intermittently; as it reached 1.7 liters the cough was getting worse and constant. The gal that was keeping an eye on me, tried slowing the flow, to see if that would help, but by the time the fluid reached 1.8 liters, I was coughing uncontrollably.

She quickly removed the catheter in my back. The coughing became almost violent and I had pain in my chest, my shoulder and my neck; this was no fun!

The tech that performed the procedure came in and observed my writhing and continued to monitor me for about an hour. They called in some head honcho guy and he wanted an X-Ray to make sure my lung had not collapsed or suffered any other damage.
It had not.

They explained that the reason for my reaction was the fact that the effusion was so large, and my lung and been so scrunched up, that upon re-inflating, it was very, very angry!!

And believe you me, it let me know. The pain continued for several days, mostly when I took a deep breath, and my cough did not go away, like it did last time.

I am thinking that the next time I do this procedure, I will not wait for so much fluid to accumulate; the last one was a piece of cake, compared to this!

Some may ask why I do not switch my medication, and I know that there will likely come a day that I must, but thus far, I have been quite content with my response to Sprycel and my quality of life. Last year, year five, was AWESOME! Hardly any side effects at all, except the PE. Response was all below the optimal .1% and I felt pretty darn good!

So I guess I prefer to stay in bed with the devil I know!

Let's hope this thoracentesis does the trick!

Tuesday, April 18, 2017

CT Scan and a Hug from Above!

Mom, in the middle of crazies!!
I guess my end of year health tests would not be complete without a CT scan. For some strange reason, my CA 125 will just not get into the normal range, and since I have a history of borderline serous ovarian tumors, my gynecological oncologist feels that a CT scan is in order; due to my continuing headaches, he is going to scan my brain, too.

Of course these scans must be done both with and without contrast, so that means it will be a two day process. Now, after all of the running from here to there, to visit kids, grand-kids, mother and father, sisters and brothers, Joe and I were really looking forward to spending a few days of down time, in Palm Springs. It is always our hope to just take a hike into the canyons, or to sit at the pool and relax.

Of course, this just NEVER happens! This trip we have been here 3 times and every single time I have had a medical appointment of one type or another; everything from blood draws, to mammograms. Now we must add two days of CT scans.

Trying to schedule a CT scan at the last minute is not always easy, fortunately I have been going to the same imaging center for over fifteen years, and they know my circumstance, and work really hard to accommodate me.

I managed to get two appointments before we were heading to Phoenix, and luckily, the condos where we stay, are right down the road. One of the issues with these CT scans, is the contrast that you have to drink to prepare for the scan. Not only does it taste terrible, it often causes severe stomach upset, cramps and diarrhea; so much fun!

So naturally, I want to have a day to recuperate, prior to a seven hour ride in the car. I suck down my two bottles of contrast and head to my appointment, already feeling nauseous. I just hate this part of the drill. I get my scan done, grab a little sneak peek of  the scan, and the tech shows me the impressive pleural effusion that I have going on in my left lung. The tech just couldn't believe the size of the effusion, and marveled at the fact that I was not as impressed! lol

I told him that I was aware that it was there and was planning to have it drained when I got back home. I explained to him that this was a recurring side effect to the medication that I take to control my chronic mylogenous leukemia. He said he was really sorry, and that he would see me the next day.

Upon leaving the office, I knew that Joe must be starving. Despite being nauseous, I suggested that we go to our favorite breakfast/lunch spot in Palm Springs; "Bit O' Country," so that he could get a bite to eat. While we were there, I decided to have a piece of toast and an egg.

While trying to force down some food, all I could think about was that I wanted my mother! I was worried and nervous about my test results and I didn't feel good and I wanted my Mom. It has been just two years since she passed away, and since she lived in the Palm Springs area, there are reminders everywhere, that she is no longer here.

While we were sitting in our booth, just finishing up our brunch, the owner of the cafe asked us if we would like to have some rice pudding, he said "no charge" my dad just made up a batch in the back, and I would like to give you some. What he did not know was how crappy I was feeling, and how much I missed my mother, and that whenever I felt crappy, my mother ALWAYS made me a big bowl of rice pudding!

I quickly sat up, my eyes wide and said YES! I would LOVE some rice pudding. I told Joe about my mom and rice pudding and wondered out loud whether the rice pudding would be like my mothers, or not. I swear, in all of my years of eating rice pudding, that no one made rice pudding like my mother; not sticky and not too sweet. Tony brought us two bowls of pudding and it looked just like mom's; not only did it look just like mom;s, it tasted just like mom's!

I swear it felt like my mother had sent me this bowl of rice pudding, just to let me know that she is always with me. Rice pudding is not on the menu at Bit O, and never before, in all of the times that we have been there, have we been offered rice pudding!

I told Tony my story, and he said that he believed in signs and was so glad that he was the vessel used, to bring me this sign of love, from my mother. It was rather remarkable and while I was a teary eyed mess for the rest of the day, I had never been so grateful for a simple bowl of rice pudding!

Saturday, April 15, 2017

The PCR Debacle!

The end of the year typically ends with us spending a great deal of time away from Boise; our families still live in southern California and Arizona, so we like to spend the holidays with them.
This, coupled with the fact that my oncologists are in California, and we teach dance at a New Year's Eve event, we are often just running and driving from one place to another.

This year was no different, with a few extra health hiccups to throw into the mix. First hiccup resulted when my PCR (blood test that measures the degree of leukemia in my body) came back at .15%, which in itself is not necessarily a "bad" result, it was just that it was a 2 fold increase from my PCR test, three months prior, which can be concerning.

So, at the request of my oncologist I was going to do a retest with the lab from OHSU. This involves having a "PCR kit" mailed to me,  (which is more like somewhere, to someone who will be home) and then finding a lab that is willing to draw the blood, per the instructions and then mailing it back to UHSU; this kit must be kept refrigerated and can only be drawn on certain days, which makes this even more difficult as we were often a few hundred miles in one direction or another.

Fortunately I was able to have the test mailed to a friend, and was able to pick it up and put it in the refrigerator. After calling three local labs, I found that this was going to be a difficult task; they had never heard of a PCR test and wanted $40 to $100 just to "look" at the kit, and then MAYBE I would be able to make an appointment to have it drawn. Needless to say I was totally exasperated, worried and annoyed!

We only had reservations at our time share for a few more days and it didn't look like I was going to be able to have my blood drawn prior to heading to central Ca. for ten days. Talk about frustrating!
I finally took the kit, drove to the cancer center where I was originally diagnosed with Leukemia, and knocked on the locked door where they draw blood. It was five till five on a Thurs. and I was surprised that they even opened the door. A woman named Peggy, happened to be there. and she just happened to be the head of the department.

She quizzically looked at me and asked if I had an appointment! lol I said, "Well, No, not exactly, here is my dilemma." She took the kit, examined it and said "Yes, I can draw this." I was ecstatic and started to take my jacket off when we both realized the blood cannot be drawn on a Thursday! lol

She assured me that she would keep it refrigerated and that it would be alright until we came back in ten days; she told me to just knock on the door and she would draw the blood and mail it off; I have no idea how I skirted the red tape, but Peggy was an angel, sent to me when I most needed one!

Upon our return to the desert, I went directly to the cancer center and had my blood drawn; it was quick and easy, no questions asked. We all did a "good juju" dance over my blood and sent it off.

Fortunately, the result was the best it has been all year; .048 So I guess I will chalk up the elevated test to lab error?

Prayerfully, in three months time, I will still be below .0%

Monday, March 13, 2017

Are There Angels Among Us?

It was not that long ago, early in the evening, when our telephone rang. I know that this may not seem strange to you, but you must understand, that where we live, there is no cell service; which means that other than solicitors, we rarely get calls. (I am sure you are aware that a cell phone is incompatible with a land line, right? I mean you cannot text, so what would be the point? lol)

So, as the phone continues to ring, I debate whether or not to answer. Eventually, I succumb and  pick up the receiver;  warily saying "Hello?"

On the other end of the phone I hear an introduction, "Hi, my name is Kelly and I am calling on behalf of the Leukemia, Lymphoma Society and wonder if I could have a few moments of your time." This, of course, allows me to put down my guard and to actually listen to what Kelly has to say.

The reason for her call was to ask my opinion on ways that our Boise Chapter of the LLS, could improve on our local Light the Night Walk. After speaking with her for awhile, I realized that I had met Kelly, last year on our walk. It was Kelly's first walk and her father has just passed from Acute Myloid Leukemia. I remember her being totally overwhelmed and emotional, and I remember feeling so sad to have met someone, who so recently had lost someone they loved, to blood cancer.

And I remember being so impressed that she was there! Light the Night is an uplifting fundraiser for blood cancers, but it is also a very sobering experience; while there are always success stories, there are also many losses.

At any rate, as we continued to chat, the subject wound its' way around to the wonderful LLS staff that we have here, in Boise, and all of the work that they have done in getting Survivor/Fighter shirts made for those of us still in treatment, fighting our disease. She then mentioned that she had just read something online about that and I told her that it was possible that what she had read, was on my blog.

There was silence on the other end of the phone, and then she said "Wait! What is the name of your blog?" I told her and she said "Oh, my God! I have been looking for you!"

Apparently she had been reading my blog, and it had been some comfort to her; it seems as though our chance meeting was meant to be. We excitedly exchanged personal information and quickly became social media friends! lol

Which leads me to the next part of this story.

Kelly is currently fulfilling a promise that she made to her father; she is working in a hospital and volunteering and raising money for the LLS. She vows to pick up the fight against cancer, where her father left off, and to fight in his honor.

These are her words:

Two days before my dad lost his courageous battle; I looked straight into his sunken eyes and with wobbling cheeks, vowed that I would now take over.
“Daddy, you’ve fought so hard. You can now let go of your ugly pain and run into the arms of your angels. I promise that I will continue to fight this battle, in your honor; until my last breath has been taken.”

Kelly has kept her promise to her father and is continuing to work in the very place she took her Dad for treatments, and she continues to volunteer her time to the LLS.


For the truly remarkable part of this story, I want to share with you an absolutely amazing, and very touching story that Kellly experienced and shared on her social media outlet page.
These are her words and her experience and I asked permission to share them with the world; I pray that you are as inspirited, encouraged and fascinated as I am.


"Please bear with me even though I need to wipe tears from my eyes and gunk from my nose as I tell you a tale, which even I cannot comprehend.

It was a usual day at work, with wheelchairs zooming by, patients sitting in the lobby awaiting procedures, Linda's loud, humorous laughter; roaring from afar, fire alarms going off, doctors rushing by in their white collared coats and many hearts of strangers. 

The end of the day had approached when a man arrived at my desk inquiring about where he could pay his bill. 

"Sure, I can show you. Follow me this way," I advised him.

We walked the short distance to see Jennie; however, when we arrived I noticed she was already speaking with another patient.

"Well it appears she is assisting another patient at the moment. If you'd like, feel free to have a seat on her couch and I'll let her know you're waiting," I kindly told him.

I walked back to my desk and sent Jennie an instant message informing her someone was waiting in her lobby. I then began focusing on an overdue work assignment. About 45 minutes passed and the lobby was dead, when I heard someone interject with ahem. I unglued my eyes from the computer screen to see the gentleman whom I had helped earlier.

He leaned in toward me inconspicuously and what happened next; I suppose you will need to be the judge of that.

"I want you to know that you are a beautiful person, with a beautiful smile and a beautiful soul. This is for you," he spoke, as he handed me a beautiful necklace."

He then said something which nearly shocked me to death.

"Your father is proud of you,” he muttered.

My eyes welled up as I struggled to thank him while choking over my tears. A meltdown had begun to emerge. He turned and slowly began to walk away.

I attempted to hide my face in the process of hurrying to the back to 'lose it', but stopped for a couple of seconds to turn to take one final glance at him, but he had vanished.

Where could he have gone in a matter of a few seconds, as he was heading in the same direction that he had originally entered through, which is a bit of a walk?

I am uncertain at this point for a probable cause, but I will add that through this experience, I have finally discovered my thesis for my final exam essay, "Might divine intervention truly exist?"

I am sure that you will agree that this is a sign that Kelly is not only honoring her father, but she is honoring each and every one of us that is either fighting our battle with cancer, or know someone that is fighting or has lost their battle to this disease.

Thank you Kelly for sharing your time, your heart and your story. The gentlman in your story is correct, "Your father is proud of you.”  And I am proud to call you "friend."

Thank you, Kelly; you are our Angel!

Thursday, February 9, 2017

Six Year Cancer-versary!

Today marks six years since I heard the words, "Michele, I do not know how to tell you this; but you have leukemia." Needless to say, I was shocked beyond belief and scared, almost to death!

I admit that it has been a roller coaster of a ride, with many ups and downs, but I am happy to report, that I am still here; enjoying life, family and friends.

Looking back on my journey I realize how far I have come, and am so grateful for the medical advances that have kept me alive.

I find it ironic that I am in Palm Springs, as I now live in Boise, Idaho, on the day, in the same town that I was diagnosed. It is bittersweet. Joe and I are staying at the same resort that we came to, on Valentine's Day, when I was released from the hospital.

As far as, how I am "doing" now, I can tell you that last year was my very best year since diagnosis. All of my PCR's were below the magical .0 number and my side effects were minimal. I still deal with the typical nerve and bone pain, fatigue, headaches and nausea, but they were more of a nuisance this year, than debilitating.

I also still deal with pleural effusion from the Sprycel, but have found that a thorocentesis does wonders!

So how did I spend my day? Having a head CT. As far as I know, I have no rocks, or holes in my head! It was precautionary due to the headaches I have; likely a side effect from my medication.
Living life with cancer is definitely an inconvenience; we spend much of our "vacation" time traveling to see my oncologist, having blood drawn and scans taken, but I just accept that this is part of the deal, in keeping me alive.

There is a small amount of stress, every three months, waiting for test results, but that is a small price to pay for the privilege of being around to enjoy my life.

Tonight I will spend with my youngest son and tomorrow morning we will travel to see my middle son, and his family. The joy that my grandchildren bring to my heart is like no other and I feel blessed to still be alive!

This year, with any luck, will be filled with travel to places I have never been, so if you are just beginning this journey of living with CML, try not to despair. Take each day, one day at a time and keep putting one foot in front of the other.

Reach out to others for support and be kind to yourself; accept your new normal and learn to roll with the punches.

And remember, that someday, there may actually be a cure for chronic mylogenous leukemia! I intend to be here when it happens!

Bricks for the Brave!!