Sometimes...There Is Never A Right Decision.
Now Playing: Day 2849-Next GP Chapter... Turning Lemons Into Lemonade :)
This was a rather appropriate blog to not have a 'mood' smiley attached below the title.
I mean...really...who can place any sort of smiley mood below a title regarding a life changing or a life ending decision.
It has taken me a while to come to a final decision regarding one final experimental treatment. A highly toxic, very long list of side effects, both short term and long term, chemotherapy drug. A non-FDA recommended drug that was given to me as one final option. An opportunity to 'possibly' bide me a bit more time...6-12 months...but without more than a slue worth of side effects. A very high mortality rate than any other treatment that I have received since the great medical mystery was finally solved last spring, May 2016.
It has literally taken me this long to finally come to a definite decision this evening. The reasons are pretty self-explanatory. I wanted to make sure that I gave myself every reason in this lifetime to either move forward with an extremely risky treatment. Or find every possible reason in this lifetime to decide against moving forward with one final treatment option. A chemotherapy treatment drug that would be given to me, 4x's the normal dosage for most patients.
But who I am to be fooling myself?
I am far from any 'normal' patient.
Eric has firmly stood his ground when it came to his decision. He was overwhelming against using such a very controversial, yet very powerful experimental treatment. A means to possibly, once again, find a way to stop feeding not just the tumors which have more than doubled their size over a mere 4 months. But as well try to shrink lesions. It's a huge risk and a far more riskier chance with odds not in my favor by using this drug. Compared to the risks vs. benefits when I agreed to a fast-track, maximum lifetime course of radiation therapy. However, things have gotten a lot worse since my last rescan. A mere 4 months ago, in which, no one could had anticipated for the largest tumor to gain such strength and continue growing so rapidly. Finding a way to starve off tumors is almost nearly impossible. In the oncology sense of things. Oncologists only have what is available to them via government funded research which brings experimental drug therapies such as this one. Needless to say, this was the only last option that my team of specialists had left to offer me.
My decision stands firmly today. I have decided against the experimental drug due to the overwhelming fatality risks vs. any type of possible benefits.
What does this mean for me? It means facing a surreal reality. My journey now means the journey to the end of a very long battle not just for myself, but for our entire little family.
Through out these past 18 months. I have learned so much about myself. That spit fire, one HELL of a FIGHTER, that I had become! The ups, downs, ins and outs. Times when I not only truly believed, but literally defied the odds. This time, however, I am not that fortunate. The internal war within has not only defied the laws of oncology treatments, but has taken over most of the lower region of my body, while literally fusing my organs together. The lesions and tumors have not only gained strength, but once again show blood flow, supplying the feeding vessels. Sadly, everything has progressed to the point of being out of control and nearly impossible for my team of specialists to manage.
I went through all the proper chains over the past several days. Finding everything humanly possible about this particular chemotherapy drug that is really not meant for my unique set of medical circumstances. The drug manufacturer, their medical team, our insurance company, their drug coverage team and even their specialty drug coverage team. Although, it meant having something for my doctors to offer me, one final option, one last attempt in hopes of biding me more time. Attempting the impossible, which is starving off what has already grown to have the strength to more than double it's size. The side effects, financial costs and mental as well physical strain on myself and Eric just has proven to be too much for such a huge risk with this drug. Our insurance company had literally already denied the experimental drug coverage twice, before finally approving it yesterday. The problem is financially, our out-of-pocket costs, along with instant side effects, short term and then long term, would be even more costly. Not having another drug to counteract possible fatal side effects was another huge deciding factor for me. I can't imagine having one course of treatment possibly taking my life in a mere instant. All to bide time, when time could had been mine if I had opted not to move forward with such a risky treatment. Suicidal thoughts, severe depression, severe muscle pain, permanent bone mineral density up to 17%, cracked teeth, jaw pain, severe gastrointestinal disturbances such as vomiting, bowel obstruction, renal failure, body temperature dysregulation, severe hyperglycemia, new onset diabetes, high blood pressure, blood clots, cardiac arrest, migraine, dizziness, seizures, facial paralysis, blurred vision, permanent hearing loss, hypersensitivity to sound, severe sensory and motor disturbances, early onset dementia. Hair loss...what I was told... could be permanent. Hair loss was the least of my worries from the three tier, long list of side effects.
I am scheduled for my next rescan and labs late next week. This after already rescheduling from this weeks rescan appointment. Needless to say, this gal needed a week break from being poked and pried. My unique, yet rare, medical case is still in the hands of the rare cancer institute. If anything, I can only hope that my medical documentation can help the next patient. Hopefully, there will never be a next patient, #14. If so, at least my medical case documentation will be available for the patient and their team of specialists. It's been hard for my doctors just trying to wrap their brains and medical expertise around a case such as mine that has not only been quite rare, but extremely difficult to manage. I am very grateful and beyond thankful for all of their hard work. Next month, I begin oncology care with a new oncologist located within our area which will help out tremendously when it comes to dealing with the pain. Traveling in the car, for longer than 15 minutes, is now far too long for me. Yet, I am still in the beginning phase with my new pain management doctor. The first round of injections did not work to help manage my pain. It's once again, solely trial and error. That means taking a bit more time, yet still remembering to have the utmost patience.
There really is a lot to write about regarding this chapter of my journey. But for now... this is enough. As my decision has been made. I stand firmly. There will be no further experimental drug therapy. Not with a chemo drug that is far too risky for my liking. It's about the quality of life for me. Not the quantity of days that could possibly be left with more suffering by the hands of an experimental drug treatment. My current symptoms are difficult enough to handle on a daily basis.
Sometimes...even with my decision against moving forward with one final treatment option. There really wasn't much of an option, yet alone, much of a decision. But all you can do, is continue living life the best way you know how, giving it all you can with what you got.
At the end of the day... I have no regrets.
Posted by GastroparesisAwarenessCampaignOrg.
at 12:01 AM EDT
Updated: October 25, 2017 3:14 AM EDT