I never thought much about what the word terminal meant until it was literally standing right in front of me and jumping up and down on my life! For once I didn't feel the term "ignorance is bliss" was such a cheesy thing to say. Being told I have stage IV non small cell lung cancer already at an advance stage AND IT WAS TERMINAL was honestly the worst day I'd had all year or maybe all decade or even in my life, but it's really too difficult to compare your calamities in a time like this. If you've never been there, please don't judge! Well, even if you have been there.. seriously, don't judge. Everyone deals with life and hem hem.. death very differently. There is no one size fits all or even a reference book on how to live with a terminal illness.
I have discovered since I heard those horrifying words that many people think they know how you, or as it is- me, should live out my days with this death sentence hanging over me. Sadly, some think they know how you should or should not be doing it. These same people with this infamous wisdom also are the ones who feel they can invoke on you just how and how not you should be "living." Ha! Tell me it isn't so, please! If I'm facing dying and I don't know how to act what makes someone who is not holding their mortality in their hands think they have even an inkling of an idea?
I'm baffled, what about you? The one thing I am not doing is coming down on people for being people. We're all in need of constant forgiveness and I for one, extend that gracefully to all more readily than ever these days. Believe me when I say, it's NOT
easy, but it must be done. (The grace and forgiveness part if that
wasn't clear. YIKES!)
Too often I'm hearing of people being wounded in there ill condition. Too many trying to figure life out for them, assuming and presuming, giving unwarranted advice that they don't even have experience in or saying pat answers that sound pretty but don't even apply. It seems there's more talking going on by the so called friends than listening. Believe me, I know it must be difficult to hear, but sometimes we just need a sounding board, someone to let us voice the thoughts rolling around in our head. Just a friend, not someone with all the answers.
A little advice, be gentle, be loving and listen with your heart.. spread joy, spread peace; but don't sweep the fact of the matter
under the rug. There are many stages of grief as most know and dealing with a terminal diagnosis puts a person right at the top of that list and working down the page.
I'd like to tell you a little about how I came to be living this
terminal life and just how long I've been preparing to die. You know, everyone is going to do it, don't you? So why is it so very difficult to accept when you know it might just be this month or
this year or before another Christmas with your family? Why is it that having this glimpse into your future brings you down on your knees and into a fog of depression instead of making you more
joyful and trying to experience everything and to be there for
everyone?
You would think this information would unleash a deep desire for
fun, laughter and recalling great memories that make you smile and bring you joy, and it can- depending on what stage of the grieving process you happen to be in and your current circumstances. Instead it can bring some deep depressing thoughts and quiet times of tears and reminiscences of mistakes and disappointments. What
can I say? It's just how it is.
I'm thankful that I can quickly turn from those dark moments and give thanks for what I have had and praise God for what He has done. For this is surely truth: my past, present and future are all in His loving hands. Everyday is different though; whether you're facing a terminal diagnosis or just trying to live your life with the normal ups and downs, life can be hard. I'm learning new meaning to some things that I used to think I understood. In the coming days I hope to share some of those things with you.
In the mean time I'll leave you with some words that I turn to when the world is closing in and the whirlwind is upon me:
"Finally brethren, whatever things are true, whatever things are noble, whatever things are just, whatever things are pure, whatever things are lovely, whatever things are of good report, if there is any virtue and if there is anything praiseworthy-meditate on these things."
Phillipians 4:8
Love, joy and peace to you and yours!
Joann
I've heard and read many things about clinical trials. Unfortunately, most of it has scared the socks off me and made me want to stick my head in the sand and not know anything else about it. Maybe it's the unknowing part, the guessing game part as it appeared to be that gave me cold chills and caused a mild hyper-ventilating state of being to come over me? I'm not sure, but I never intended to be one of those clinical trial guinea pigs and may have even declared that very thing in one of my nightmares some time ago. But as life would have it, things change, we change.. circumstances change.. a few simple words like, " we don't have any other treatment options for you.." coming from my oncologist completely changed my thoughts and especially my hopes for clinical trials! Cancer truly does change EVERYTHING!
Honestly, over the course of this journey and the on going digestion of as much information on the new technology in the cancer world, I had already begun to soften on my opinion of clinical trials. I believe somehow our minds are programmed to immediately reject anything new. Let's stick with the old and the usual and what we've always done. Well, for me sadly, all of those options have been tried and proven themselves obsolete and useless in my fight against this deadly disease that continually finds a way to grow faster and smarter than the good old medicines that we've always used. Medicines, that I might add have not been doing a very good job of healing much less of curing much cancer.
So, if there is a chance of a cure in a medicine that hasn't been discovered yet then sign me up! Actually, I just signed up and recently took my first dose of a very new drug that is not FDA approved but allowed only for investigational purposes. In fact, though it wasn't a completely pleasant experience, it wasn't near as awful as my many weeks of hugging the toilet among other side effects after chemotherapy infusions.
You may be asking, what is a clinical trial all about? Well, I know very little more than you at this point, but the short answer to that question is that it basically is a research study of a drug that involves people. My trial is specifically for people that have NSCLC (non small cell lung cancer)
with a positive EGFR mutation. This is a rare form of lung cancer that mostly targets non-smoking young women, but of course no one is exempt like any cancer.
I don't know how I will respond to this drug, what other issues may arise or if this is the drug that my heart and family long for, but I do know it's part of my fight and I am definitely fighting!
Yes, It's a little scary. I don't know what to expect and there hasn't even been very many before me to receive this drug to be given any kind of list of what to expect. Strong protocols are in place though. This isn't my docs first rodeo by far. My oncologist is keeping a very close eye on me with weekly labs and vitals, monthly testing on specific organs that seem to be sensitive to the medication and of course quarterly scans to get a look into just what those little dark cells of evil are up to. Hopefully they are dying very dramatic and painful deaths nano-dozens at a time even as I'm writing this sentence. I can envision it, can you? If you happen to find yourself in a similar place with not many options and have any questions I'll do my best to answer them.
Im hopeful, I'm continuously prayerful and even if this is only a step to get me somewhere else, I'm at peace and look to my Father in heaven to lead the way. Blessings to you..
"... and lo, I am with you always, even to the end of the age."
Matthew 28:20
