Wednesday, November 3, 2010
[Scene from Friends: Central Perk, time lapse. Phoebe is now looking at the covers of two different books.]
Chandler: Are you judging them by their covers? Because you’re really not supposed to do that.
And this is my cousin Aaron, actually, he's more like a brother to me. To look at him you might think, "Well there's a handsome and intelligent looking guy." And you would be right on both counts. But would you guess he's a scuba diving, Shakespeare watching, always has time to help friends and family, deep thinking, fun loving, great chef kind of guy? Well, he is!
Thursday, September 9, 2010
Did you ever read those books as a kid, those Choose Your Own Adventure books? Well if not, the basic gist of the series was that the stories were told as if you, the reader, were the main character and every now and again in the story you get to make a choice about what you, the main character, will do. Depending on what choice you make the book tells you which page to turn to and the story continues until another choice needs to be made. These books were particularly fun because if you didn't like how the story ended, or even if you didn't like the direction in which the story was headed, you could just simply go back, make a different choice at one of the turning points, and then see where that story takes you.
Monday, August 23, 2010
Awhile back this miraculous thing happened and I never mentioned it. I got an e-mail from a young woman who is fighting this same horrible cancer. Now imagine my surprise because there just aren't that many of us with this cancer, let alone young women. But there Harmony was, and we instantly fell into a friendship and formed a bond that I have no words for. And so Harmony and I talk through e-mail and enjoy each others blog posts. And one day, I hope to get to actually meet my friend, Harmony.
Now lately, I have been having a bit of a hard time. Cancer-wise things are looking pretty stable but for many other small reasons (so many of which can be tied back to cancer) I have been very stressed and been having a lot of anxiety. So I talked with my friend, Harmony, and that always helps. I know that down in Texas there is someone who is in a position so similar to mine that I know she can really sympathize with what I'm going through. I know that down in Texas there is a prayer being lifted up for me.
Then last week a small padded envelope showed up in my mail addressed to me and inside it was this beautiful little angel wing necklace and this note: "I have the same necklace - put this on, remember how strong you are, and trust in God to take care of you. Your body and God are a force to be reckoned with!!" My sweet friend, Harmony, had sent me this thoughtful physical encouragement to remind me that even on the rainiest days, there are friends who are standing in the same downpour that you are and that when it all seems like too much, they are there to lean on and sometime to, literally, bring you a wing and a prayer to help fly you out of your anxieties.
My dear friend, Harmony, I have said it before and I'll say it again now, I wish that you didn't have this horrible cancer, I wish no one did. But since you do have to have it, and so do I, I am so glad that we have found each other. We're going to make it, you and I, and we are going to change the way people look at cholangiocarcinoma!
Saturday, July 31, 2010
For whatever reason I cannot seem to find the words to say what I want to today, so I thought I'd play you a bit of music instead. I enjoy playing my harp more than I could ever express in words and I will share a bit of that with you today. Just please understand that I am by no means an expert player and I often play better when I'm not being observed (or recorded). I have found that often the music I gravitate toward will reflect the mood that I am in that day. I have also been blessed to have a harp instructor/friend who knows my personality and moods well enough to pick pieces that often reflect that as well. That being said, I hope you enjoy "The Foggy Dew" as much as I love playing it.
Friday, June 18, 2010
We're all familiar with the little elephant, Dumbo, and his big ears, right? And do you remember how Timothy, the mouse, gave Dumbo a "magic feather" to give Dumbo the confidence to fly? And Dumbo flew. Then at the worst possible moment Dumbo lost his "magic feather" and with it lost his belief that he could fly. Of course, in the nick of time, Timothy explains to Dumbo that the feather was never magic and that he can fly without it and, of course, Dumbo finds his confidence in himself and flies without the feather.
Labels: health update
Friday, June 11, 2010
So, once again, I know it's been quite awhile since I've posted anything. Sorry about that. In any case, I thought I just give you all a quick update on how I have been and am doing.
Labels: health update
Monday, March 8, 2010
So I know that change is part of life, and I wouldn't mind it if it was just an occasional light breeze or maybe even sometimes a moderate wind that blew through my life, but that doesn't seem to be how things are working out. The winds of change are not blowing gently but instead seem to be howling all around me. After awhile you get sort of used to it, you start to be able to tune out the chaos and fear, you tape your windows and build your little sandbag wall to hold back the floods, you buy a good raincoat, boots, and strong umbrella, and it works... most of the time, but there are days that, like it or not, and try as you may to fight against it, you get swept up into the storm and the reality of it all crashes over you. These storm swept moments can come at anytime, without warning, but most often I find that they creep in at night when all is quiet and my mind has a little time to try and rest after the craziness of the day. In the quiet all the "what ifs" start to play themselves out in my, all too vivid and active, imagination.
Sometimes my imagination focuses on my actual cancer diagnosis. The fact, the reality, that I have cancer is something that, on most days, doesn't seem quite real. I mean, I know that I have cancer, the chemo treatments, if nothing else, are a constant reminder of that, but it's something so big and so foreign that it's hard to wrap my mind around. And because of that, I am usually, blessedly, able to push that fact to the back of my mind and not really think about exactly what my cancer could mean. But, in the quiet, reality has a way of creeping in and I find myself battling the storm again. I think, sometimes, of how, while he is positive and optimistic and pleased with how I am doing, my doctor does remind me from time to time that my condition could change at anytime and maybe change quickly. My liver is right now free of tumors and that is fantastic, but at the same time, my liver is full of holes, some relatively large, from where they have burnt out those tumors. Because of the holes, and because even though it is regenerated to pretty much normal size, I, in truth, only have the left lobe of my liver, my liver is more fragile than a "normal" liver and could, for lack of a better way to put it, just decide to not work, or not work as well, at any time. I feel okay, I look okay, and right now my liver is functioning really well, so that is a fact that is easy to push out of my mind, but sometimes it does creep back in. And think about that, it's terrifying! What would happen if my liver started to fail? I am not eligible for a transplant. Liver failure, from what I understand, is painful. What would I do? I am not really that scared of death, but the actual dying frightens me. And then what about my lungs? The tumors are spread throughout both my lungs and cannot be surgically removed. The chemo is, right now, keeping them from growing and possibly even shrinking a few, but for how long will the chemo work? And if it stops working then what? I've kind of gotten used to being able to breathe and think it might be difficult if that were to change. And I laugh about it now, but sometimes, when I am out in the howling winds, it's more than a little scary.
And then there is my biggest fear. Like I said, I'm not really scared of death. That is to say, I'm not all that scared about what will happen to me after I die. But I am scared of the actual dying and, more than that, I am scared about what will happen in the lives of those I leave behind. Not that I imagine myself to be all that important, and while they may miss me, most people would be able to carry on without me, but it is my little Aria that scares me the most. Of all the people in the world, she is the only one who I can convince myself that she needs me. And I love that little girl like no one else on this earth. Yes, I love my husband and my family and my friends, with all my heart I love them, but my little girl is different. I love Kylynn in a way only a parent, maybe only a mother, could understand. And sometimes the thoughts of what it might be like for her if I died creep in and I am thrown out into the storm and it is from these thoughts that it is most difficult for me to find my way back from. Some nights I just sit by my sleeping little girl and cry. How long do I have with her? Will I get to see her grown up? Will I at least be able to see her into her teens where she might be better able to understand and cope with my death? And then there are all the other questions that fly though my mind. Who will comfort her when she cries in the night? Who will iron her shirts for school? Who is going to make her lunch and remember to fill out her forms and permission slips for school and help her pack her backpack? Who is going to take her to school? Who is going to take care of her when she is sick? Who will help her with her worries and problems? Who will plan her birthday parties and take her to her friends' parties? There are thousands of these questions and, for sure, her daddy would take up many of these duties, but it's not the same as having mommy. Above all thoughts and fears, the ones concerning Kylynn are the ones that trouble me the most. How could I leave my precious girl?
Things are constantly changing in my life. There often seems to be no solid ground and constant motion is the only way to stay above it all. But that is exhausting and sooner or later I have to stop and rest. And sometimes in what should be rest, the storm sneaks in and crashes over me, and maybe that is okay. It is, after all, only sometimes and a good cry does make me feel a little better. Even on the rainiest day, when the winds are howling in the dark of the night, there is the promise of the sun in the morning and the renewal of hope. And we carry on, we have to, there is no going back and changing the past but there is today and tomorrow...
Thursday, March 4, 2010
Hey all! I realize that it has been quite awhile since I posted anything. I'm sorry about that. Chemo schedule coupled with a daughter with endless energy has been exhausting. Trying to make time for everything but failing miserably. I have posts rolling about in my brain just need to gather up the time and energy to put them here. Soon, I swear. Thanks for understanding. Love you all!
Sunday, January 10, 2010
So I'm sure you all have heard more than you have ever wanted to about the whole bra color posted to support breast cancer thing on Facebook. Personally I've heard enough too. I think it was started with good intentions and has since gotten blown out of proportion. But that craziness tipped off a bit of discussion among some of my friends and me about my cancer, cholangiocarcinoma or bile duct cancer. We got to talking about how the rarer cancers, such as mine, get little publicity, little to no funding for research, and there is very little available in the way of support. All of this leaves those of us with rare cancers feeling alone and sometimes even a bit slighted. Now, don't get me wrong, I do not begrudge anyone with any cancer any and all research and support that they can get. Some people who I love dearly have or have had some of the well known cancers and I am so grateful that there is research and support out there for them. I just sometimes wish that it was also available for me. As far as I know, cholangiocarcinoma doesn't even have a ribbon color which has always prompted me to say, jokingly, that there are "No Ribbons for Rebecca". And usually I do mean it as a joke, but on the really bad and lonely days I have to admit that it does hurt a little to be in a cancer population that is so often overlooked.
So last night I was laying in bed, sick from a chemo treatment, thinking about all of this and I began to think how wonderful it would be if there was a cholagiocarcinoma conference some where some time. A place where survivors and those who love them could all come together. And where health care professionals who specialize in cholangiocarcinoma could come and share their knowledge. Oh I had a splendid time thinking about all the things that this conference could include and if it could have been dreamed into existence I'm sure it would have been last night. This evening I was thinking about it again and typed "cholangiocarcinoma conference" into a search engine just to see what would come up and to my delight I did get a rather good hit. The first thing that came up was not a conference date, but the next best thing, evidence that someone else has been thinking the exact same thing. The Cholangiocarcinoma Foundation, a web site that I stumbled across some months ago on some other lonely night. Under their "get involved" tab, under volunteer, down towards the bottom of a list is "Annual Conference Chair" and a short description. As far as I can tell this conference has yet to be organized but still, it's in someone else's mind as well.
The Cholangiocarcinoma Foundation site is a wonderful one for information about my cancer and a reassurance that I am not alone no matter how much I feel like I am. Like I said, months ago I found this site and actually submitted a picture to their "Faces of Cholangiocarcinoma" page, but then life go busy and I forgot to go back and look. But I did go look tonight, and there I am, it's a nice feeling. I guess I am not all alone after all.
I guess it goes to show, even though I often feel alone in my cancer and I am sometimes saddened by the lack of research and support for my cancer, that even on the rainiest, loneliest day, there are rays of hope and who knows, if we gather enough of those rays we just may be able to light the way to a real answer.