I spent some time today reading through the patient stories at the Pheo Para Troopers website. You should too.
After reading there, my thoughts today are this: Do you have any idea how incredibly lucky I am?! With all of the 'lightning bolt and lottery ticket' odds that I've been hit with so far, I think the biggest 1 in a million happening that I've been blessed with is this: Somehow or another, I got the information I needed at the right times to talk to the right people to get me to the right doctors to get the treatment that I needed right away.
When reading stories like these here and in other places online I've felt, in a typically neurotic Val fashion, inadequate because of the simplicity of my case so far. Inadequate isn't quite the right word. I guess I've felt unworthy of notice or care or of world-class doctors to help me walk through my case. I've felt, somewhat rightly, that held up to what other people have faced, my worries and frustrations and fears have been petty. After all I have "Only a carotid paraganglioma," "Only another nodule." Reading through those stories those onlies are just emphasized for me even more.
I read Matt, Erin, and Tisa's stories today and one of the things they all had in common was going to doctor after doctor after doctor and getting treatment that was good, but that missed something. Those missing links and pieces of the puzzle that weren't picked up on right away, even by doctors who I'm sure were very good, inevitably made these journeys that were already arduous even more difficult.
It's true that I "just" had a carotid paraganglioma removed and that I "just" have a nodule. The stories that are represented here and elsewhere online give me plenty of perspective. What I've been thinking about, though, as I've wondered in the last few days what the future will bring is, what will MY story be? Will these be the only tumors that I deal with? I'm only 30. If I have anywhere near an average life expectancy and this disease progresses in the way that I understand it to do so when there are mutations involved it just seems logical to me that there would be more to deal with, though that may not always be the case. Will there be abdominal paras or Adrenal Pheos? More tumors in my head and neck? What about tumors in other places in my body? If there's more to come, where will they show up? What twists and turns have I not even dreamed of?
What is astounding to me though is how incredibly lucky, or blessed I am to have found Dr. Pacak and his protocol at NIH and been accepted into his study this early in the game. I wasn't thrilled with who the Navy referral docs sent me to in the beginning, but I quickly found my way to better options AND with the advice of a couple people (one of them being a Pheo Para Trooper) and a timid email sent I very quickly had Dr. Pacak in my corner! How incredibly lucky I have been that things have been tweaked here and there just so to get me to the folks who were in the know the first time around. At 30, with all of this really being my first go-around, even if there is more to the story, I have a team of doctors on my side who will be watching like hawks. I'll be working with people who see people like me--and people with much more complicated stories like the Pheo Para Troopers featured in these stories--on a daily basis.
How can I be anything but grateful then?! Forget gloomy!!! I got the one in a million luck of going to some of THE LEADING experts on Paras and Pheos when the adjectives describing my ordeal could still be words like, "Just" and "Only." I haven't seen legions of doctors. While it felt for a while in the beginning, like I was having to explain my situation a million times to people who didn't fully understand, I've been on this journey less than a year and haven't really seen THAT many people.
In light of that, it only makes sense to shift any of my "Why did *I* have to get these rare tumors?" thinking to, "If I had to get these rare tumors how grateful I am that things aligned themselves just so leading me to one of the best teams possible to see me through this!"
One in a million luck, every once in a while, is a really great thing to have. Today, I'm glad I've got it.
Go read these stories. Find out why the Pheo Para Troopers are such a vital and needed organization. It's because of these people and others who are allying against these mysterious illnesses that hopefully more and more people are going to get to have luck like I did and find their way to the doctors and treatment that they need immediately and not half-way into their stories. I'm honored to join the ranks. I can only hope that I can help other people to be as lucky as I have been somewhere down the line.
I'm so happy to read that you got the help you needed at the right time. Being able to help others, so they don't have to have those years of frustration, is exactly what fuels many of the trooper advocates.
ReplyDeleteBut! Don't downplay your own ordeal. You still had the emotional trauma of experiencing this type of tumor, had to face all the unknowns, and survive the stress of surgery too. This experience gives you the ability to empathize with others that are going through this. It's not "just" a tumor, it is a rare opportunity to learn, help, and live in a way you never would have been able to do!
I'm so glad you are part of the Troopers, and I hope one day we will be able to meet in person!
~Erin MacBean~
Hey, I didn't read the other stories, and I only know bits and pieces of yours. But I do know that you went through a lot to get to where you are now. You were lucky, you did get the right doctors at the right time and when they sent you to the wrong doctor you trusted your gut and one way or another were then sent to a different doctor. How many doctors did you see from the time you felt that little lump you thought was just a swollen gland. You don't have to answer, but it wasn't one or two, you had a special little bundle that you had to make sure was safe, all the while making sure you were safe. Sorry I am rambling....just know that I love you and you are extra special to me even if you JUST and ONLY had a carotid paraganglioma. Don't make me send you some Fannie May. :)
ReplyDeleteVal,
ReplyDeleteI'm glad you're feeling more positive and that you see the good things, but healing requires acknowledging both the good and the bad. A year after the cancer treatment ended, I still go to a "yoga for cancer survivors" class. Each time we start a new series of classes, new people come whose conditions remind me of my own good luck. Not bad to have a reminder of how lucky I was....but it didn't make the treatments back then less significant in my life. Just reminds me to be grateful and happy that I was able to cope with my own symptoms....and hopeful that others are able to fight their way up. Attitude and persistence and faith and optimism are priceless attributes.
Aunt Dar
Your experience helps you know how blessed you are. It gave me an opportunity to share with you. It shows me how we get to reach out to others in this big world for help and support.
ReplyDeleteI'm not going to read these stories. I'm done with my para episodes. I don't want to create fear in my body. I am an embodiment of love and so are you, my dear.
Blessed be.