The reason for this is actually quite simple and pure; it was because I really had little to update, little to complain about, and little to report. Life has been good!
My fifth year of living with leukemia has been my very best year, during this journey; in terms of great pcr test results and lack of side effects, from my life saving medication Sprycel; I have actually felt like a normal human being; most days.
So my lack of posting was simply due to the fact that I was actually able to get out and enjoy my life! What a blessing and joy it was; I had forgotten what it was like to not have the cancer cloud, raining on my parade, every day. There were times that I even felt a bit guilty; seeing so many others suffering, with either out of control CML, or severe side effects from their medication, while I was dancing through life.
I tried to empathize and support those I could, while I continued to marvel at my good fortune. I felt darn good; my leukemia was nicely under control, and I prayed that this would continue....forever! I felt so very blessed, yet somehow undeserving.
Well, guess what??
This time it is not from CML, but from the treatment. So here we go; as with all things in life, you just have to take the good with the bad, and roll with the punches!
Sick of the cliches? Me, too!
Anyway, it wasn't until we were driving home from my second thoracentesis in a seven week period, that the gravity of my situation hit me hard. At first I did not grasp the full implications of what was actually going on, but the switch on the light bulb suddenly flipped, and it was clear. I have reached a crossroad. I still have cancer and I am not the one in control; choices and decisions will have to be made, and for those of you that know me, living in denial is my preference. Just call me Scarlet, "I will think about that tomorrow!" And tomorrow has come......
You see, I have dealt with the common side effect of pleural effusion for the past six-plus years, and thus far it has been nothing more than an inconvenience. I would take a short break from Sprycel, the effusion would clear and I would go back on my meds.
My oncologist and I have tinkered with my treatment, to find the lowest dose possible, to acheive the best pcr test results, with the least amount of pleural effusion complications. I have fought to stay on this drug as it has given me optimal pcr results, while allowing me to still have an acceptable quality of life. I know it works.
I have my own aversions to the other TKI's on the market and whether justified or not, it is how I feel. I have read, researched and observed everything and anything that you can find regarding the treatment of CML, and have come to my own conclusions.
I have discussed my thoughts with two of the top CML specialists in the world, and they understand my concerns and reservations, and have been on board with helping me to choose the best treatment option, for me.
But NOW, here I am with three thoracentesis under my belt, or should I say rib cage, and it is becoming increasingly obvious that my journey on Sprycel has possibly come to an end.
The realization that I really DO have cancer and that having cancer is a serious matter, suddenly hits me like a ton of bricks. I no longer feel light hearted and invincible; I now feel scared, confused, indecisive, and a bit fragile. I didn't realize, until now, how lackadaisically I had been living. This is a harsh reminder and very sobering.
A new medication could control my CML beautifully with no side effects at all; this I am throwing into the universe as my preferred choice; but there is always the chance that it will not control my CML at all, or that I am either terribly miserable or have a life threatening reaction.
It will be like starting over; my body will have to adjust to the new treatment and all of the worries, aches and pains that go along with introducing a new potent drug into your system will be present; this most likely will not be a walk in the park; remember that I said year five was my best year??? Meaning it took my body five years to fully adjust to Sprycel; will it take five years to adjust to the next one? Will I ever adjust? Will it work? Am I up for the challenge? UGH!
Another disturbing fact is that I will be eliminating one of the life saving medications available to treat CML, from my options. Granted, Sprycel and I have had a pretty good run, but this will limit my options; which could limit my lifespan. This is not something that I have let creep into the dark places in my brain for a very long time, but being smacked in the face with it, it has given me reason to reflect; to be grateful for the time I have had, and to remember to take nothing for granted; there are no guarantees and you never know when things are going to change.
I suppose that if the timing was a bit better, this hiccup in the road may not seems so monumental, these choices may be easier to make, and I wouldn't be feeling such despair.
You see, I was tricked last year by feeling so good; I felt so good that we planned a month long trip to Europe, and that trip is due to start in a month. So what does one do? Starting a new potent drug and leaving the country does not sound wise, so the current plan is to check the pleural effusion size before leaving and have a thoracentesis before I go, if need be, and to lower my dose while I am gone, and see what the numbers tell us when I get back.
It sounds like a viable plan, except for the fact that I am still coughing after the second thoracentesis, so that has me really concerned; this is not typical, for me.
I suppose it is time to wipe the tears, pull up my big girl panties, call my doctor and see what's up!
I have got to come up with a solid plan.
Till next time, Be Well!
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