What's up? My carcinoid had been steadily progressing, especially in my liver. As of August 2009 I was pretty much out of real options here in the good ol US of A. So, I quickly had to come to terms with my disease as it was not willing to go on "stop work" until I was ready to deal. Nope. The surgeon told me, "Ya need something systemic...surgery won't buy you much, plus the risks, plus the recovery, plus plus plus." My oncologist, ever the optimist, trying hard to fill his drug trial spots, wants to put me on the Lanreotide trial, "But Doc, I say, I am already on Lanreotide every 28 days." What's left? (That I can qualify for and will help me, BTW??)
I had to make fast decisions and I had been following others who were like me. Some had gone ahead with the PRRT. So, I had to basically tell my doctors, with all respect, and then get their concurrences.
I had my 1st PRRT in Sept 2009 and my 2nd PRRT in January 2010. With a 11cm liver tumor, several lymph node tumors, one in my spleen, and my friend the meningioma, I found out that I had another tumor in my neck - a lymph node behind my parathyroid. Ohhhh is that why I always feel a lump in my throat??? Since my neck was never really scanned, you know here in the USA they like to chop us up into every billable scan possible, I had my head scanned, abdomen, pelvis, and the full body Octreoscan. This little buddy never showed up until I went to Germany and got the Gallium 68 scan. Would you like me to order an MRI of your neck now??
Apparently, not all carcinoid tumors are created equal. The tumors in my spleen and neck do not have somatostatin uptake, IOW, they would not show on a regular Octreoscan. Also, they don't uptake the PRRT treatment. Now what do I do with THAT information, I wonder? But they did show on Germany's state-of-the-art Ga68 scan, thanks to Dr. Professor Richard Baum. The good ol USA has fallen behind the times. We don't have quality scans or treatments that are offered throughout Europe as a standard of care. To quote another carcinoid friend, "It is criminal that PRRT is not in the USA." End of quote. I ditto that. Now off my soap box.
OK. Two treatments later, I am "stable". I will take it. Yep. I wanna be a "NED" (no evidence of disease...now can you make that into a song, please?) but I'll settle for for "SD" (stable disease). I have to admit, the 2nd PRRT kicked my butt. Just like a great fighter, down for the count, I spent two months down for the count and was not sure I was coming back up. I was sooooooooo tired. Fatigue just sounds like something military people wear...not a condition that leaves you unable to shower, feed yourself, or get dressed. Did I say how tired I was? Oh, and forgetful, too.
Now I am just a shadow of my former self. I used to be sharp - a Chemical Engineer. Ready to take on any problem, fix it, do it, debate it. Now I look blankly at my kids when they ask big questions like, "Mom, can I have my allowance, please?"
This disease is taking my life, inch by inch. It's been 4 years since my diagnosis and, gentle reader, whomever you may be, I am holding onto whatever I have left as each day becomes the "new normal". Yep. My glass is half full when I can still brush my teeth, care about brushing my teeth, bathe, dress, and OMG go out and drive to watch my son's little league game. Sorry honey, I can't make it to your weeknight games because Mommy's so sick and just so very tired....promise I'll be there on Saturday.
I am at the delicate cross roads of, "I can't take it anymore" and "The show ain't over yet". I honestly felt I couldn't take it and didn't want another treatment. I had a frank talk with God about it. It went like this, "God, I am really suffering and miserable and I don't want to do this anymore (fight the cancer fight, that is). So, God if you want me to have this treatment it is all up to you ( I know, it always has been, yes). I mean, God, you will really need to make this happen because I am not going to try at all anymore. God, if You want this for me then please make it clear.
OK. Would you like to know what happened next? The very next day my husband's employer called and said that even though the insurance would not pay for this treatment, that the benefits group would be paying for the treatment and the trip. OK God, I heard you loud and clear. And, OBTW, the employer will provide a travel agency to make all the arrangements. WOW God, OK I guess you really want me to have this treatment. Then, I really don't know who will go with me, I am so weak and we have no one to stay home with the kids while we go out of the country for 2 weeks. My dear friend and neighbor says she would be happy to come with me. OK God, I remember the story of Jonah and the Whale. I get it. OK. I am going.
So, I say , "Thanks for everything, for this day and for letting me share." I leave you with this:
Like children with their broken toys,
with tears for us to mend
I brought my broken dreams to God because He was my friend.
At last, I snatched them back and said, "How could you be so slow?"
He said, "My child, what could I do? You never would let go."
Peace.
Andrea
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