Friday, March 21, 2014

Disturbed; On So Many Levels

I shall preface this by saying that this is my opinion today, and that we all make and live with, our own choices; I am not judging another’s choice, I am simply trying to comprehend it; and wondering if somehow, we have failed her.

This is a post that I do not even begin to know how to write; my emotions and thoughts are all over the board on this subject, which has many so many branches that I haven't a clue, where to begin.

I suppose that I shall begin with the trunk of the tree. I recently read that a CML patient has made a conscious decision to stop all treatment, due to side effects and quality of life, and to allow CML to “take its’ course” as she is tired of being a “burden” to her family, and fed up with living with the side effects from her treatment. She received many comments in support of her decision; I simply wanted to scream; “Don't give up, yet!"

Since I do not know her history, I cannot really weigh in on her decision; I just find it terribly disturbing and completely frustrating that with all of the advances in CML, there is not a regime that would allow this woman the opportunity to treat her CML, while allowing her an acceptable quality of life; a life that is worth living, and fighting for.  

As human beings, we typically will fight for our life no matter what the cost; we suffer extreme pain and illness with the hope of better days. As a CML patient, I continue to fight my fight, in the hopes for an actual cure; a day when daily medications are no longer a part of my life, side effects are gone and my body will rejuvenate after many years of treatment. I feel that with all of the advances that have been made in the field of CML during the past 15 years, that this is a possibility.

I want to tell this woman to “hang-on”;  to wait just a little longer, and to tell her that if she truly is so miserable that she is willing to die, that maybe one more doctor, one more new treatment plan will help her to be able to continue to have a life, while still fighting CML. I want her to try, one more time.

I am guessing from her despair, that she has probably tried, “one more time” many times and is at the end of her rope; this is where my frustration and inquisitive nature sets in; has she had good treatment? Has her medical team exhausted all possibilities? Have they addressed her side effects with compassion, and tried to find ways to combat them? Bottom line; have they done everything that they can? Have they exhausted every option available?

Has this woman considered that if she changes her mind, it may be too late?

There are other thoughts that also enter my mind as well, such as does this woman have support, or is she all alone in her struggles? Does she have a reason to live, does she have passion for life, or has she found herself at the bottom of a deep, dark tunnel? Is she suffering from depression or simply depressed from her situation? There are so many things that must enter into the equation that leads to the decision to allow oneself to die, that I cannot even begin to wrap my head around them; I cannot imagine giving up, or maybe I should say, giving in.

As I said before, I do not personally know this woman, yet I feel her despair. I want to stomp my feet for her, and to hold her close, and fill her heart with strength, and fight. If this is truly the end of her road, then I wish to fill her heart with peace. I cannot even begin to understand how she must feel and how she came to this decision.  I hope and pray that it is the right decision for her and her family, and that they will all be able to understand, accept and support her through this journey, as the road is likely to become very difficult to travel.

I wonder if she has considered the fact that as bad as things are now, being on treatment; that they are likely to become much worse, and to continue for years, prior to actually passing away. When you consider that life without treatment for CML may be better for a while, the side effects from the progression of disease will become more and more difficult to live with as the disease progresses.

No one knows how long this will take, but I don't imagine that it is an easy way out. My husband and I just returned from a CML Summit and learned of another woman that made the choice to stop taking her medication and to live her life. She has come to regret this decision, wished she had never made it and strongly advises against it; for her, it is too late. I am sharing this information for those of you that sometimes feel like throwing in the towel.

Attending the CML Summit was extremely uplifting and inspiring; meeting others with CML, for the first time, really solidifies the fact that we are not in this boat alone. If you are feeling like you want to jump ship, then I highly encourage you to attend a Game Day Event, sponsored by Novartis; you will be empowered by meeting other CML patients and gain tons of knowledge from Novartis's Oncology team. 

This brings me to the next branch on the tree; which is a lackadaisical approach to an individual’s treatment of their own, personal CML. Will this decision encourage others to follow suit and give up?

I shall save that one for tomorrow!

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Bricks for the Brave!!