Thursday, May 16, 2024

But you Don't Look Sick

"But you don't look sick?"

Do you ever wonder what "sick" looks like"? Do you ever want to climb into a hole when you hear that phrase? Or do you want to scream at the top of your lungs, "What Does Sick Look Like to YOU"?

Or do you just roll your eyes and walk away?

If so, then chances are that you live with a chronic medical condition, cancer, disease, or disability.

My chronic disease happens to be blood cancer: chronic myelogenous leukemia. I have been living with and fighting CML since February 2011. That is more than thirteen years!

Wait, what? You have had cancer for thirteen years? Yup! I sure have and I try my very best to live my life; to the fullest, with an optimistic attitude and a smile. When you see me out and about, traveling, dancing, or even going to a play or lunch, that is one of my good days. A day that I may forget I even have cancer. I love those days, those are the days that make the fight worthwhile.

What you don't see is the aftermath of having good days. They look a little different; there are the days that I do not get dressed until the afternoon, and I spend many hours sitting on a heating pad or running to the bathroom every five minutes. 

There are days that I am fatigued, not the type of "tired" that a nap helps, but a fatigue that makes everything an effort, an extreme effort.; an " I am not going to get anything done today" kind of fatigue.

There are times I just push through, and other times I just give in. Giving in to that type of fatigue means allowing yourself the grace to rejuvenate. To not feel guilty about taking a few hours or days to heal.

Fighting a chronic condition looks different for everyone. No one should be made to feel guilty, or less of a person because of their illness, so next time you see someone pre-board a plane, skip a lengthy line at a museum,  park in a handicapped parking space, or ride one of the scooters at the grocery store, do not pre-judge them. 

You do not know their story, you do not know how hard they might've worked to get where they are at that moment, and you do not understand the toll it is taking on them, to be there.

Have a little grace and compassion, at the very least, do not point, stare, and snicker. Remember, someday you too may have an invisible illness.

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Friday, May 10, 2024

Tolerability vs Intolerability


When someone lives with a chronic disease, the balance between controlling the disease, and ensuring the person's quality of life can be challenging.

I was diagnosed with CML in February 2011. From early on, I realized that CML is a journey, not a sprint. People are diagnosed with this blood cancer in many different ways; some are diagnosed during routine physicals, while others exhibit many signs of leukemia, and are really sick. 

I was quite sick at diagnosis.

In the beginning, my side effects from my medication, Sprycel at the time, and my symptoms from CML were often difficult to tell apart; Is it the Sprycel, or the CML causing me to feel poorly, or to be in pain?

As time went on and my CML became stable, I eventually reached MMR (major molecular response) and was better able to distinguish medication side effects from leukemia side effects.

Thus I began my CML journey.

During the first few years, my side effects seemed to fluctuate between tolerable, and troublesome. I suffered from bone, muscle, joint, and nerve pain, headaches, fatigue, hair loss, weight gain, and pleural effusions.

At times, these side effects caused me to spend numerous days on heating pads doing little more than going to the bathroom and eating. My mind was too occupied with pain to be able to read, watch TV, or engage in any sort of conversation.

I understood during those early days that this was to be expected; I was fighting cancer and my body was fighting hard to win the battle. As time marched on, I began to have good days in between the bad ones. I was able to start returning to a semblance of life, albeit different than the one I had known before my diagnosis.

I discussed my side effects with my CML Specialist and he had a variety of suggestions and medications that helped to control my pain and discomfort. Fortunately for me, he was extremely compassionate and understanding. At this point, I accepted my new normal and tried my best to live within these confines.

My CML was well controlled and for me, that was my primary goal. I deemed these side effects "tolerable". Meaning that the success with which my CML was responding vs the discomfort I was feeling was "worth it". My other medication options at that time were not acceptable to me. The reward outweighed the discomfort.

Fast forward five years and my pleural effusions became larger and more troublesome. I found myself needing a thoracentesis to have the fluid drained from my pleural sac at an ever-increasing frequency. We are talking two liters of fluid that would accumulate weekly!

Yet, I was still unwilling to switch from my "miracle drug"! I saw a pulmonologist and discussed a permanent drain and pleurodesis. Neither sounded fun! I continued down this path despite this "inconvenience".

Several years down the road, I needed to have rotator cuff surgery, which required a block, and anesthesia; both would be affected by my pleural effusion and my inability to breathe "normally". I had two thoracentesis the week of the surgery, one the day before.

This surgery is typically outpatient, but due to my CML, and my pleural effusions, I was going to be kept overnight to make sure all was well. That turned into a five-day stay in the hospital, as well as going home on oxygen, as my oxygen level continued to dip extremely low.

This side effect suddenly went from being tolerable, to intolerable. It was now seriously affecting my quality of life to a degree that could become dangerous.

What I realized at that point in my journey was that I was stubborn! I would much rather continue along my journey with the devil that I knew, versus starting a new journey with one I did not. I realized that while most of my side effects were life-altering, painful, and annoying, they were still tolerable, BUT there was one that finally had become intolerable.

Needless to say, I switched from Sprycel to Bosulif, learning my level of tolerability versus my level of intolerance, which is apparently high. I still have a lingering mild pleural effusion (tolerable) and far fewer side effects than I had on Sprycel. All of which are tolerable. Maybe next time I am facing a medication change, I won't be so stubborn!

I suppose that in my eyes, fighting cancer was not going to be easy. I expect good days, and bad days, aches and pains, and fatigue. I have accepted these side effects as part of my journey in my battle with CML, however, if there is an option that helps to alleviate or lessen said side effects, then by all means, these options should be explored.

Obviously, side effects that are damaging to your internal organs, that you have no control over, should be considered intolerable.

So my question to you is which side effects do you deem tolerable, versus intolerable? What is your risk versus reward scenario? What are your expectations?

Here's hoping your journey is full of happy moments and much joy. I am looking forward to hearing from you.

FaceBook: CML: A Place for Hope and Humor

#chronicillness  #fundraiserforleukeia  #chronicmyelogenousleukemia  #Bosulif  #leukemia  #lovemylife  #cml #travellingwithcancer #leukemialymphomasociety  #cmlspecialist #lightthenight  #thrivingwithleukemia #livingwithcancer

Thursday, May 9, 2024

Those Aren't Side Effects!

I recently spent two weekends collaborating with fellow CML warriors for a special project that will be released soon.

During this time, I realized how many unmet needs are still in our community; there are still so many people struggling to find great care, support, and answers to their questions.

My hope is that all of our efforts will help fill this void.

That being said, the first topic I saw today in a CML group went something like this: "What do you do when your oncologist says that your side effects aren't known side effects?" My first inclination is to say, "Get a NEW oncologist!" dismissing your side effects and minimizing how you feel is not ok!

Your side effects should never be minimalized, and you should feel comfortable sharing them with your oncologist. You should not be made to feel small, or as though you are complaining. Remember, your doctor sees you for a very short period, and you live with yourself 100% of the time. You know your body, you know how you feel, you know when something is not right. You should never be afraid of advocating for yourself.

After a breath, and my anger cools, my second thought was to give your doctor a second chance; bring the package insert with you, or pull up the side effects online and show him that your side effects are valid.

Sometimes you have to read further down the list of known side effects to find what you are looking for, but you can bet if other CML patients suffer from the same symptoms as you then the side effects are likely there.

The next order of business is to decide whether or not there is a way to combat your side effects or if they are completely intolerable. Are they so extreme that they are causing you to miss doses of your medication, or are they disrupting your life so greatly that you cannot, or do not wish to continue on your current path?

If so, that is a different conversation entirely. One that would involve deciding whether or not a medication change would be your best option. 

Also, have you been recently diagnosed? If so, it is going to take your body time to adjust to the medication, and to the fact that you have cancer! Cancer is a big deal, leukemia is a big deal. In the beginning, many people are really sick. I was one of those, diagnosed with nearly 400,000 white blood cells and every single symptom of leukemia. 

It took me an entire year to feel "good" and that was not the "good" that I felt before being diagnosed. Thirteen years down the road with my CML currently stable, I feel so much better than I did in the beginning.

Do I still suffer from side effects? Sure, but not every day. And of course, there is always the million-dollar question: Is this a side effect from my medication, my CML, or just life in general?

I am not a doctor, so my suggestions, if you think some of these things may work for you, would be to run them by your oncologist, or primary care physician. Often it is your primary care,( I suggest an internal medicine physician), that deals with treating your side effects, while your oncologist would be the one to make a medication change.

Seeing a specialist, an oncologist who sees many CML patients, is often beneficial because he/she has many other CML patients who may be going through similar ups and downs. They could have previous knowledge, as well as tips, on what worked for their other patients.

At any rate, here are a few things I have found that have helped me during my cancer journey.

For Bosulif, my major side effect is nausea. In the beginning, I premedicated with Zofran. I started on 100 mg and slowly worked my way up to 300 mg per day, allowing my body a chance to adjust to this medication. 300 mg is the dose my oncologist deemed correct for me, for where I am in my CML journey.

Since I am unable to tolerate more than 200 mg at one time,  I ingest 100 mg with my first meal, taken halfway through my meal, so that the pill is in the middle of the meal, sandwiched between the food and my second dose, of 200mg is taken with my last meal of the day. I have also found, that taking it with milk is helpful.

Many, many people fail bosulif, in my opinion,  because they are given the full dose right out of the gate and they just cannot tolerate that high of a dosage right from the start. Also, many are not pre-medicated for nausea, which is extremely common.

I no longer pre-medicate for nausea and have found that three drops of CBD oil (no THC), under my tongue at the first sign of nausea seems to do the trick. I also suck on Preggie Pops and mints. Sometimes ginger oil helps, too.

Immodium for diarrhea, Heat, and Baclofen for muscle pain. Heat for bone pain, and Claritin often work, too. I always have Voltaren Gel handy and have used Lidocaine patches for nerve pain in my feet.

My hair falls out: shorter haircut. Mouth sores, Ora-Gel and Healios. Pleural effusion, well, that sucks; a thoracentesis!

Sometimes juggling side effects can be weary making, but I remain grateful for the stability of my CML, and the gift to live every day. 

I delight in the good days, tolerate the bad days, and look forward to tomorrow!

Hang in there warriors, we've got this, and never be shy about reaching out for support, and for sticking up for yourselves!!!

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Thursday, May 2, 2024

Long Over Due CML Update

CML Update

It has been eons since I have done an actual health update.

One of the "good" things about having a chronic cancer (treatable, not "curable"), is that if you are one of the fortunate ones to respond to treatment, life eventually levels out and your body begins to accept its treatment and its new normal.

For me, this has been a blessing. I am not going to lie, the beginning was rough, and I have had many bumps along the road, but for the past several years I seem to have been able to just live. I do not take this blessing lightly.

One of the greatest struggles I have endured is my continual pleural effusions caused originally by Sprycel. A switch to Bosulif, has reduced my pleural effusion and eliminated my need for weekly thoracentesis.  

This has enabled me to return to a more consistent and active lifestyle, which I have embraced wholeheartedly. I often feel that I had better get to it, while the getting's good.

I have traveled to Europe numerous times, taken cruises with family and friends, and even made a major move from Idaho to Tennessee, in order to be closer to my grandchildren. All of these adventures are still more challenging than they were prior to my diagnosis, but I refuse to let CML stop me in my tracks.

Fast forward to the beginning of 2024. 

Because I moved away from California decades ago leaving behind my daughter, my sister and her family and a plethora of dear friends, we return every year from December through March just to visit and feel the love.

This February I developed a very juicy, annoying cough that lasted for nearly a month. Other than the cough, I felt fine. Many people in the Palm Springs area seemed to have the same cough, and I was told that the hurricane that went through this past summer stirred up a lot of "stuff" from the desert sand, thus making people cough,  so I was not concerned. It did cut into my swimming and hiking time so that did not make me happy, but otherwise, it was just a major inconvenience.

Or so I thought:

Prior to returning home the beginning of March, I went see my CML specialist for a routine cancer check. This year was no different turned out to be not quite as routine as I have become accustomed to.

First stop, blood pressure; typical BP for me is 120/65 ish. First reading 188/98!!! Say What???  Check it again!! 192/99!!!! Check the other arm! 190/90!! At this point, I am totally freaked out! I have never, ever had a high blood pressure reading in my life. I know many would not be concerned, and many would say it was because I was "at the doctor's office" but I know better.

Next stop blood test results: all out of whack, particularly my potassium. Then came the thump on the back and I went from being a star patient to a problem child. The thump led to a chest X-Ray to confirm a large pleural effusion around my left lung. I suppose I was not surprised, as my last night of dancing left me gasping for breath before I even danced one song, and I also was unable to walk and talk; an increase in my shortness of breath.

All of these things were a huge reminder of the fact that yes, I really DO still have cancer. CML has been quite predictable for quite some time, but it certainly has not gone away. I'm not going to lie, I was freaked out, angry, and seriously concerned. 

The game plan was to take me off of Bosulif, for possibly a month, treat the pleural effusion with prednisone and two diuretics and return in one week. At this point, we do not know whether the pleural effusion is from the cough (my best guess), or the Bosulif (which I am reluctant to switch from) I suppose that time will tell. 

Next order of business is changing my flight home until I am stable, which is not a bad thing because I am with my daughter and her family.

After a week of medication and a medication break, coconut and banana smoothies from my daughter (high in potassium)  I am happy to say that my pleural effusion is reducing, blood work and blood pressure are coming back in line with my normal, and I feel less stressed about the situation. I think I will live and I am not as freaked out as I was.

What I have learned, living with cancer for thirteen years is that it gets easier in some regards, more difficult in others.

One more week of the same regiment and another trip in to Los Angeles and I am so grateful; my pleural effusion is better than it has been in eight years, and everything else blood-related is back in line with my normal.!! My x-ray is soooo pretty, that I may just frame it! I am reminded what it is like to really BREATHE and I am grateful for the excellent care of my CML Specialist. 

Now to monitor everything once I get home to see whether the culprit was the cough or the Bosulif. I am banking on the cough.

I will keep you posted.

                                               FaceBook: CML: A Place for Hope and Humor



Bricks for the Brave!!