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.

I can't tell you how many times, upon learning that I have cancer, people have said something to the effect of, "But you look so good! I never knew!" And while I appreciate the compliment and am truly grateful that I don't look like what people imagine a cancer patient should look like, it serves as a constant reminder to me that you never can tell about a person just by their outside.
For Example:

This is Eric. By looking at him you would probably never guess that he swears like a sailor when he hits his head on something or stubs his toe... but he does. He also is great with computers and cars and he has spent a bunch of his free time helping others through programs like Habitat for Humanity and the C.A.R.S. ministry. And he often remembers that his wife is a sucker for dark chocolate and buys it for her without being asked.

These two jokers are Ken and Jeff, my brothers. To look at Ken you might not know that he has traveled to places like Honduras and Guatemala with Habitat for Humanity, but he has. And you might not see his ingenuity, creativeness, or genuine care for others, especially his family, just by glancing at him, but it is there. And to look at Jeff you might see his humor and love of fun, and that is something that I love dearly about him. But you might not right away see his depth and strength, his thoughtfulness and intelligence, though all those things lie within Jeff as well and are part of why I love him so well.

Here is Julia, one of my sisters. To glance at her you might see the beautiful and shy mother of a sweet little girl. But there is no way to tell, just by looking at her, that she holds strong convictions and has great strength of character. She is a force to be reckoned with when she gets angry or feels strongly about something. And though she is tiny, she is one tough gal! And she is going to ROCK as a foster mom!

Take a look at Amy, my other sister. What do you see? Likely you see a beautiful young woman who can be shy and outspoken, by turns. And while that is true, what you can't see by looking at her is that she is a strong, determined, intelligent mom of three who started her own business at a young age.

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!

Who knew just by looking at them? And that is just character stuff, that doesn't speak at all to what troubles each may have weathered or what burdens they might be carrying. You never can tell. So many people that I meet everyday never have a clue about the quiet battle I am waging with cancer, and that's okay. I am sure that there are similar difficulties or burdens in the lives of people I encounter everyday that I am ignorant of. And that's okay too. It's enough for me to be who I am, know what I know. And the phrase, "But you look so good, I never would have guessed." has become a call to compassion and patience, and a reminder that others are carrying unseen burdens AND unseen treasures too.

And even on the rainiest day, when it seems that all people see are our outsides, there are little reminders that we, also, are called to compassionately look beyond the obvious and see others for who they truly are, scars, flaws, beauty, and all! And there is the hope that others will follow our lead in "looking beyond the cover" and that could lead to far fewer rainy days indeed!

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.

Well, not to ruin it for anyone, but life does not work like a Choose Your Own Adventure book. I mean sure, we all get to "choose our own adventures" to some extent, and, as it also happens in the books, some events in our lives are not of our choosing but are dictated by the Author. But unlike the book series, there is no flipping back a few pages, making a different choice, and seeing how that works out. Some days, though, I wish I could go back and make a few changes and maybe just get a peek at what that might be like.

I know I cannot go back and undo my cancer, I know that my adventure has taken a turn that only the Author is able to do a re-write for. But sometimes I think I'd like to go back to that point where my story turned, to the point where I split into two Beccas, and, just for a day or two, I'd like to walk the path of the Becca who doesn't have cancer.

I've been more than four and a half years on this cancer road, I am tired, yet I choose to continue on and, though it would take too long to explain it here, that choice doesn't really feel like a choice. But I can remember back to when I was not "cancer Becca" but just simply Becca. I remember the fun of my childhood and the typical struggles of adolescence. I remember college, getting married, and more than anything else, being pregnant with and having my Kylynn Aria. I remember what I looked like, I have very clear pictures in my mind of all sorts of events from my pre-cancer life. What I cannot remember though is what it feels like, physically feels like, not to have cancer. And for some reason that makes me immensely sad. So that would be my first stop on my little excursion as "no cancer Becca", I would stop and make a conscious effort to store in my memory the physical feeling of a cancer-free body.

After that I would like to just get a peek at what my life might have been like if I never had cancer. This year would mark my tenth year of teaching, what might that have been like to have been able to continue with the career that I decided upon when I was 13 and worked so hard to achieve? What stresses in my life, as it actually is, might have been lessened if I could have continued working? What sweet children have I missed out on meeting and how might the lives of the two best assistants, excuse me, I mean "paraeducators" :), be different if I were still teaching? How might my family be different? How much worry and stress would they all be spared if only we weren't all thrust into this world of cancer? What stresses at home would be less or nonexistent if I never had cancer? I wonder how I might look if I never had cancer. It's strange to think, but I'm sure I would look rather different. My hair would, for sure, be different. I would not have this lovely 7 and a half inch scar on my abdomen. And there are a million tiny changes that cancer and chemo and surgery have brought over the years that would all be erased. But the one change that "no cancer Becca"'s life would have that I so want to get a peek at, and at the same time, I don't really want to know about at all, the one that weighs heaviest on my heart, is that of my little Aria. What might Kylynn's life be like if she had been able to grow up with a cancer-free mom? It breaks my heart to contemplate that question for too long but I can't help but think the changes in her life would be significant.

But then, the choice of "no cancer Becca" or "cancer Becca" was never mine, that choice was in the master plan of the Author. Just as the choice of having a mom with cancer or a mom without cancer was never a choice in Kylynn's life. So I must trust that this cancer plot line is integral to the story of both of our lives. And even on the rainiest day, when the outcome of the story seems grim and unavoidable, there is always another choice to be made, an adventure to be had, and the knowledge that the Author could change the direction of the story at anytime.

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.

I think in all of our lives we occasionally have our own personal "Dumbo feathers" that we cling to to give us courage or confidence or reassurance. And, like Dumbo, when we lose those "magic feathers" we can lose our courage or confidence or assurance. Of course, in the end, it often turns out for us much as it did for Dumbo and we realize that we never really needed our "magic Dumbo feathers", or maybe that we did need them at one point but now no longer do. But that doesn't mean that we don't have our moments of panic when we find our "feathers" gone. It doesn't mean that we don't sometimes long to have our "magic feather" back. And it doesn't mean that we don't sometimes go through periods of uncertainty, indecision, and fear without that "magic feather". But ultimately, in the end, I think we all find ways to fly without our "Dumbo feathers", or at least I hope so.

Today I partly lost and partly gave up the most unlikely of "Dumbo feathers", that being my chemotherapy. I met with my doctor up at Mayo Clinic and he went over the results of all my latest tests with me. As of yesterday, my liver is still full of holes but also still clear of tumors. My blood work all looks good. And the tumors in my lungs haven't grown at all. All fabulous news. Then my doctor started talking about my chemo. I've been on this latest chemo since last October and he said that normally the most benefit you're going to get out of most chemo regimens is seen in the first six months. We're on month eight now with my chemo and my tumors are stable but my side effects from the chemo are sort of sucky. Given all those facts and, of course, all sorts of doctor knowledge that I don't have, my doctor suggested a "chemo break". That meaning we would stop my chemotherapy and closely monitor my condition. My doctor's reasoning is that we have probably gotten most of the benefit that we could out of the chemo and that continued use is likely not having any really significant effect on my cancer but it is having a significant effect on how crappy I feel. He also said that he does not believe that stopping this chemotherapy is going to have any effect on my lifespan even if (and it sounded like a pretty significant "if") it had an effect on how quickly I have a recurrence/tumors start growing. That bit is a little harder to explain, but it did make sense. If my tumors start growing in a month or two of being off the chemo my doctors said that it is likely they would have started growing regardless of the chemo. But on the flip side, there is good possibility here that I could go for a good stretch without any recurrence or tumor growth and that could all be time without chemo side effects. And if things start to change and tumors start to grow my doctor still has options for me, more than a few, so it wouldn't be "end game"... at least, theoretically.

But ultimately the choice was left up to me. My doctor would continue the chemo if I said so or he would cancel it if I said so. It wasn't an easy decision and I'm still not sure I made the right one, but today I gave up my "Dumbo feather" and stopped my chemotherapy. I traded in my "magic feather" for hope and trust. Hope that this was the right choice, hope that I can, indeed, fly without it. And trust in my doctor who has never yet steered me wrong. And, of course, that's not to say that I didn't need the chemotherapy to begin with, just that continuing it might be like clinging to a "magic feather".

It is a strange place to be though. Am I in remission? No, not really, I still have a bunch or tumors. It's more like we have scared the enemy into hiding and are now we are hoping that we scared them enough to "keep their heads down" for a long long time but we are also watching and waiting for them to show signs of what their next move will be. And it's a tougher place to be in than I thought it would be. I feel like I should be doing something to actively fight this. I'd rather be active than reactive, but still the plan makes sense.

Waiting is scary, especially without my "Dumbo feather", but even on the rainiest day (and this day is really rainy both emotionally and literally) there is the hope and trust that I will find that I no longer need my "Dumbo feather" and that I can, indeed, fly.

Friday, June 11, 2010

A bit of an update

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.

About 6 months or so back my chemo got changed from being the oral Xeloda to a combination of the IV chemo drugs Gemzar and Cisplatin. The frequency and amount of chemo that I have been receiving has fluctuated a good deal over the past months due to low blood counts but it seems we have finally settled into a schedule that my blood counts seem to be tolerating. I am currently receiving chemo once every three weeks. The chemo isn't horrible, it really could be much worse, but it's no spa treatment either, that's for sure.

The last time I was up at Mayo, about 6 weeks ago, my scans looked pretty good. "Pretty good" meaning they showed that my liver is still free of tumors right now, full of holes but still tumor free, and that the tumors in my lungs have not grown at all. And I would agree with the doctor, that is indeed pretty good! So no changes were made to my treatment plan.

Now I am heading back up to Mayo next week for scans on Thursday and meeting with my doctor on Friday followed by chemo if all goes according to plan. I am, however, a bit nervous that things this time may not look quite as good as they have been looking. A few weeks ago I got a bad sore throat followed by the loss of my voice for a few days and then that was followed by a deep chest cough. Over the next week or so the chest cough improved but then turned into this weird sort of lighter more gaspy (is that a word?) cough... and that cough hasn't gone away or gotten any better. And I have also started to have some upper back pain behind my lungs. So, I'm a bit worried about this doctor's visit. It could be nothing, and I really hope that it is, but it could also be the start of bad things to come. And the not knowing can drive you absolutely batty.

I think it has got to be one of the worst things about cancer, not knowing if what could very likely be a "normal" ache or pain is indeed normal or may be a signal of something bad and cancer related. It makes you feel like a hypochondriac or a crazy person. I have actually laid awake some nights (yes, more than one) trying to "assess" my various pains and it makes me laugh to look back on it because I was thinking things like, "Now, does this feel like a liver tumor?" Like I would really be able to tell. Heck, I had tumors the size of a lemon before I was diagnosed and only had occasional pain and nothing that screamed liver tumor at me. And really, who sits there thinking, "Ah yes, this pain feels very liver tumor-like, I really need to call my doctor now"? So, you see, you can drive yourself crazy wondering and worrying, but then, on the other hand, if you just write every ache and pain off as being a "normal" one then you can land yourself in a whole heap of trouble by missing early signs of something that could turn bad quick. I guess the trick is finding a happy medium... I, personally, haven't found it yet.

So that's where I am right now. Headed back up to get everything checked soon and worrying about it all in the mean time. But even on the rainiest day there is the knowledge that the rain will eventually stop, the waters will recede, the damage can be assessed, and work to repair any problems can begin.

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

I'm still here...

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.