Even On The Rainiest Day...

Life has been busy, as usual. I feel like I have been constantly running all over with Kylynn, taking her to her various different activities. One place that I recently took Kylynn was to see a seamstress and talk with her about getting my wedding dress made into a First Communion gown. It sounds like the woman we talked with is going to be able to make a beautiful gown for Kylynn, I am excited about that, but looking at my wedding dress got me thinking. I started thinking about Kylynn and her wedding day, someday in the future, if that is what she chooses, and I was, once again, wondering if I would be here to see that day. Then I started thinking that there was a time that I would look at my little girl and wonder if I would get to see her First Communion, and here we are, planning for it, looking forward to it.

In 2007 I made a journey half way around the world to a tiny village named Medjugorje and the one thing my, then 3 year old, Kylynn asked me to bring her home was a pink rosary. I came home with many pink rosaries with the thought that she would receive one for each of the big events in her life along with a letter from me, if I wasn't here. The first one that I planned for her to receive was one for her First Communion and I honestly didn't feel with any certainty that I would be here to give it to her myself. Yet here I am. My little girl is 7 years old now and I will be here to give her that pink rosary at her First Communion. I can't even begin to tell you how happy that makes me. Those pink rosaries hold so much meaning for me now. Each one is a milestone for Kylynn, an event I dearly want to be present for, and each rosary is a challenge daring me to fight harder. I will be so happy to give Kylynn that first pink rosary, but I will be ecstatic to give her the last one, to know I was present for so many big events in her life.

Another couple of little things came about in the midst of my everyday hustle and bustle whose significance would be easy to overlook, they are such commonplace occurrences, but I was lucky enough to reflect at the right moment and thereby see the wonder.

First, ever since I started playing the harp I thought about what a cool thing it would be to play Kylynn to sleep, to have her want me to play her to sleep. But things rarely work out the rosy way we imagine them, 7 year olds have their own agendas, bedtimes fall into set routines, and harp practice gets pushed off to times after Kylynn is asleep. A few nights ago, though, Kylynn was very insistent about falling asleep in my bed and then having me move her to her bed later. I argued a bit about this with her stating that I needed to practice my harp (it's in my room) and Kylynn simply replied that she liked listening to me play and that she would go to sleep and not argue or talk if I just let her stay in my bed and listen to the harp. I eventually agreed and, indeed, Kylynn kept her word and went to sleep without further talking or argument, but it wasn't until later that I realized that life had handed me a small gift, I got to play Kylynn off to sleep on my harp.

The second small thing that happened was that Kylynn had her first sleepover with at friend at our house this weekend. Again, this seems such a commonplace event that I almost missed the significance in it. Laying in bed last night I recalled a somewhat tearful conversation I had with one of my sisters about 4 years ago. I asked that, if something happened to me, she would allow Kylynn to have sleepovers with friends from time to time at her house as I thought parents might shy away from allowing their daughters to sleepover at the house of a friend with a single dad. My sister, of course, agreed and we moved forward with life. Saturday night as I sat, covered in glitter and paint, making crafts with two giggling 7 year old girls, I didn't see it, but here was another small gift, another event I feared I would never live to see. I am blessed.

And so you see, even on the rainiest day, in the midst of the muck and disguised as the everyday, there are small things, gifts and blessings, that really aren't small at all. We just have to learn to be still long enough to see and recognize them.

Throughout this whole cancer experience my daughter, Kylynn, has remained pretty unflappable and amazingly strong. She has, for the most part, not been overly plagued by fear and worry and for that I am so grateful. Sure she has had some rough patches, but in the grand scheme of things, Kylynn has weathered all of this cancer crap very well. One might think that she has done well because she isn't really aware of my whole situation, but that isn't the case. Kylynn is a very intelligent and inquisitive little girl and there isn't much about my cancer that we have kept from her or could keep from her even if we wanted to. She, from the beginning, has wanted to know everything right down to what color tumors are, saying that she feels more confident about the situation if she knows what is going on. So we have done our best to keep Kylynn informed as best we can while trying to stress our confidence in God and in my doctors. And, overall, it has worked well for us all. But every now and then I think reality catches up with Kylynn, as it does with me sometimes, and for such a young girl it must seem even more monstrous and overwhelming than it does for me.

"...But we get the strength to carry on
And build a life of our own making
We thank the Lord for each new day
And for every breath that we are taking

It's a good life
Far from the high life
And I thank God that this was my life"
- "This Was My Life", Celtic Thunder

"...And looking back on all the years
The loves, the sweetness, and the sorrow
Have made me what I am today
And I'd do it all again tomorrow

It's been a good life
Far from the high life
And I thank God that this was my life

We can't deny life
How it flies by, life
And I thank God that this was my life"

- "This Was My Life", Celtic Thunder

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.

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...

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.

I really do love Christmas. Over the years the joy and excitement has shifted from the thrill and anticipation of receiving presents as a child to the joy of giving presents and watching my own child's thrill and anticipation. And as I have grown I have come to appreciate on a deeper level the joy, love, and peace that come with the season. So this year I have been waiting, rather patiently, for that joy and peace to fill me and my true enjoyment of this holiday to start. It's December 21st folks! It still doesn't feel like it has happened and I am swiftly running out of time!

I've been singing all my beloved Christmas carols and reading the story of the first Christmas to Kylynn, but somehow, I feel miles away from Bethlehem, weary and scared in Egypt. Instead of anticipating the birth of Our Saviour, I feel stuck in the Exodus story. And I'm not even feeling like I am Moses in the story. No, Moses had the benefit of talking to God, of knowing what was going to happen before it did. No, I'm no Moses, I am just an Israelite who is a slave in Egypt. I watch and wait in fear while Moses demands our freedom from the Pharaoh and, when he refuses, the plagues begin. How terrifying to live through with only the assurance of Moses that it would be alright. Then when Pharaoh relents and lets the slaves go I have to leave the only place I have ever known and set out into the desert on the promise of something better. Then Pharaoh changes his mind and starts chasing us! Oh, and did I mention we're following a column of cloud by day and fire by night, that's a bit frightening. And then to top it all off, Moses parts the Red Sea so that we can safely pass and then lets it all come crashing down on the Egyptians. Can you imagine? Yes, it is awesome to behold, but can you imagine how frightening that would be to walk through? And then to watch all that water crash over the Egyptians? And after all of that we wandered through the desert for 40 years before coming to the promised land. That's what I have been feeling like. I'm in that desert, I have just left the only place I have ever known, I have seen awesome but terrifying things, and now am wandering, walking, and waiting. Waiting for what I have been promised.

Doesn't exactly sound like a Christmas story, does it? And yet, that's what I kept coming back to. And then I remembered some different people wandering in a different desert, afraid and waiting for a different promise. The wise men, the kings, who come to visit the baby Jesus. They first went to Herod who asked them to find the baby and then report back to him with his location. Then the wise men set off on their journey following, not a column of cloud or fire, but a star. Their journey was long and filled with fear because on their way they came to understand that Herod meant for them to give him Jesus' location so that he might find him and kill him and they decided not to return to tell Herod. They must have known that if Herod were to ever find any of them that their lives would be forfeit. Yet they continued on and kept to their decision. And after a long journey they found the baby Jesus. They found what they had been promised, a saviour.

And so, are the stories of Exodus and the wise men the same? No, and yes. They are different times, places, characters, situations, yet they are both about leaving what you know, what you understand, what you are comfortable with, and stepping into the unknown in search of the promise of something better. They are both filled with journeying, fear, and more than anything, waiting! And that's where I find myself this Christmas as well. I have long since left what was comfortable and known, sometimes I wish to go back, but that is not possible. I feel as though I have been doing much wandering and a lot of that wandering has been filled with fear. But more than anything, I feel like I am waiting. Waiting for what I have been promised. And that promise begins with Christmas.

I might also point out that the wise men did not arrive on Christmas day. They were not there with the angels and shepherds. They travelled far and waited long to receive what had been promised. But that promise was there for them all the same, just as it was for the Israelites after their journey. And so maybe this year, that is me. I am travelling with the wise men, and in a way, with the Israelites. I have left what I have known. I am frightened. I am tired. I am waiting. But my promise will be there. Even on the rainiest day, My Lord is waiting. And, even though it came differently this year, that is Christmas.

It's not something that I like to admit, but things have been kind of rough lately. This new chemo sort of sucks. I feel like I have done little else but run back and forth from Mayo for treatment and the hospital here for blood work. The chemo makes me quite tired, it has been messing with my blood counts, my arms are bruised, I'm nauseous, and I have circles under my eyes like I've never seen before. And that's just the chemo stuff. Kylynn has been, to put it mildly, challenging lately. Christmas is rapidly approaching and I have lots left to do. And then there is the everyday stuff that has to get done. I am stressed and anxious. I honestly don't remember being quite this stressed for a long time. Stressed enough that I am sleeping poorly and having nightmares which is unusual. BUT whenever I am feeling a bit overwhelmed, whether it is 2 in the afternoon or 2 in the morning, I have taken to picking up a gift that a very sweet friend gave to me. It is a small book titled There's No Place Like Hope by: Vickie Girard. It was a gift that my friend, Katie, gave to me when I got together with her on my Nashville trip. It's not a new book and that, I think, makes it even more special. The book used to belong to Katie's mother who was battling cancer, and it was given to Katie's mother by yet another cancer warrior. Katie became the owner of this little book when her mother passed away and that she, Katie, parted with that little bit of her mother because she felt it was important that I have it makes the gift beyond precious and my friendship with Katie priceless! And look at the book, it has been well loved! The cover is worn in places, it has stains and faded spots, the inside has passages that have been highlighted and pages that have been dog-eared. That tells me that the other women who owned this book loved it too. This book has character and history. I love items like this, they are fuel for my imagination! So when I am most stressed I love picking up this book and reading bits. Or sometimes I just hold the book and think about the women who owned it before me. I think about them, in their own tough times, holding this same book, and that gives me strength. And then I think about Katie and, because she is so much like me, I know she must realize what a special gift the book is, but I marvel that she cares enough about me to give me such a precious thing that belonged to her mom. It just goes to show that even on the rainiest day, when cancer looms dark overhead and stress and anxiety press in on all sides, there are things that can offer great comfort and strength through their history and character and, more importantly, there are friends who place these things in our hands and offer us their unfailing love and support.

I think that sometimes we get caught up in the enormity and seeming endlessness of cancer and we let it overwhelm us. We feel hopeless and helpless and any small change that happens, be it a physical change or a change in treatment, causes stress and maybe even despair. And that is probably normal (not positive, I'm still a bit new to the world of cancer) but I think that sometimes those emotions can prevent us from seeing positive changes in the cancer journey as the huge and amazing things that they are.

I returned to Mayo last week for a check-up and my liver looks good. Well actually, it looks like it is full of holes, but not full of tumors right now, YEA! My liver function tests all look really good too. My lungs, however, have my doctor a bit concerned. The tumors in my lungs are not growing any faster than they were last time I was there, but there are growing. They are still small though and not causing any breathing problems. The chemo that I have been on has not stopped the growth of the tumors, which we already knew, it does seem to be slowing the growth but without stopping the chemo and waiting to see how fast things grow we won't know. I've been on the same chemo for over a year now and the continued growth of the lung tumors has made my doctor suggest other treatments. There are still things that we can try but from here forward the treatments become more taxing to me. What my doctor would like to try next is a different chemotherapy. This chemo would be given through an IV and would be once a week for two weeks and then off for one week, then repeat! So, I will be starting that treatment up here at Mayo this Friday, the 16th, returning for a second treatment on the 23rd, and then meeting with my oncologist before continuing with it in November. If I tolerate the chemo alright then I will start receiving it closer to home and not have to travel up here weekly. There is also some talk of putting a port in but that will likely wait until next month.

So yes, a new chemo and the possibility of a port (which might actually be a good thing) but did you miss it? The good news, I mean. The huge change in my condition that even I, at first, just glossed over when telling people how my trip to Mayo went? My liver has NO tumors in it right now! None! That is HUGE! It has been nearly 3 years since I was able to say that. And so I stopped there to add up the number of tumors that I had 3 years ago, I believe it was 10 or more in my liver at that time. And then I mentally added up all the different procedures that I have been through to try to get rid of those tumors. And you know what? Somehow, the math doesn't add up. There used to be tumors in my liver that were just sitting there, not growing, not shrinking, just sort of hanging out. And we never really treated those. So what happened to them? I looked at the scans with my doctor and I agree, there are no tumors in my liver, and maybe we treated and removed them all, but I don't remember that. But the are gone! And, my friends, that is a huge thing! To be honest, headed up to Mayo this time I was so nervous that they were going to find lots wrong with my liver, I have never been so happy to be wrong! Now, I don't know how long my liver is going to stay tumor free, but it is tumor free now and, to me, that is enough. More than enough.

So yes, I have to start a new chemotherapy. And yes, it is probably going to be rather unpleasant. But even on the rainiest day, when cancer threatens to overwhelm us, there are these huge things, these changes that often slip by unnoticed. Some may choose to call them an improvement, I call them miracles! And I am so thankful for them!

So the numbers, as far as I can tell, go a little something like this:

• About 2,000 to 3,000 people in the U.S. get diagnosed with Bile Duct Cancer each year.
• Bile Duct Cancer is about twice as common in men than it is in women when diagnosed in 60 and 70 year old people. It is 15 times more common in men than women when diagnosed under the age of 40.
  
• Bile Duct Cancer is mainly seen in older people with the average age at diagnosis being 73.
• Median survival for Bile Duct Cancer is 6 months when untreatable by surgery.
• 5 year survival rate for cases where a liver resection is possible is something like 15-40%

• My cancer is seriously rare.
• More dudes have this cancer than chicks and because I'm a chick with bile duct cancer who was diagnosed while I was less than 40 years old I am even more of a rarity.
• I'm not anywhere near to being 73 how did I get this disease?
• I'm lucky that the doctors thought my cancer could be treated with surgery, but super unlucky that the cancer keeps recurring and is spreading.
  
• The out-look even with my surgery isn't too great.

I know I haven't posted for awhile and I am feeling really bad about that. I promise that I will write something new soon, you know I always have something to say, but, for tonight, I am going to re-post something that I had on my blog on MySpace. I originally wrote this post on November 13, 2006, not quite a year after I was diagnosed. My original post was titled "Wanderlust".

It's an odd thing, to sit here at 30 years old and wonder if the bulk of my years on this earth are now behind me. It really is strange. And facing the possibility that your death may be closer at hand than you would like, brings with it many things, absolute terror for one. Also there is sadness, regret, grief, an odd sort of loneliness, and a glimpse of all the things I may not have time to do or see. But past that is a clarity that I never knew before. It's an odd thing. All these things I will, no doubt, eventually write about, but tonight, ah tonight, my heart is filled with wanderlust…

There are SO many places that I long to experience. And now I may not ever get to see them, but I hope that my sweet Aria, my Kylynn, has enough of her momma's heart to yearn for these places as she grows. And then I may yet get to see them with her eyes.

I want to go to Ireland. It has a pull on me like no where else. I want to see the castles and country sides. I want to walk along the Cliffs of Moher in Clare and breathe the ocean air. I want to visit the Aran Islands. I wish to explore Connemara. And how I would love to stand on the Giant's Causeway in Antrim and watch the sun come up. Ireland.

And then there is Morocco, Marrakech in particular. I so want to experience Djemma el Fna, the "Night Market". The sights and sounds! I can almost smell the cinnamon, taste the orange juice, and see the storytellers and other performers in the square. I am not one who often wants to try odd food, but I want to taste all that Djemma el Fna has to offer. And the just outside of Djemma el Fna , I can imagine the stalls, or souqs, of vendors filled with Moroccan men and women to haggle with over pretty baubles to bring home for my family. And then I wouldn't be opposed to a trip the Fes just for the heck of it. An ancient city, tombs and a palace can't be all bad! Yes, Morocco, I long to walk your streets.

Egypt, not far from Morocco, but it holds a different place in my heart. I long for Egypt. I swear I must have been Egyptian in another life. I can so clearly visualize so many places. Karnak, Luxor, Thebes. I see them so clearly, now I want to walk them. To touch the stone of the cities, to stand in the temples, to just taste the hot desert air. And Alexandria, and Cairo… Oh how I want to see Egypt.

There are so, so many places I want to see and so many things I want to do. I hope that I have the good fortune to be able to do and see at least a little of what's in my heart. And what I cannot, I hope that my little girl has an adventurer's spirit and the odd gift of this wanderlust to see the rest for me.

This post is a bit of a departure from my usual... or maybe, in a way, it isn't at all. But either way it has been banging around in my head for awhile trying to get out, so here goes...

Awhile ago I set out on a quest through young adult literature looking for books to share with the son of one of my dearest friends. This young man is 14 years old, I just love him to pieces, his life has been difficult, to say the least, and I wanted a way to connect with him more and maybe provide guidance of a sort. Books have always held unexpected answers for me as well as providing me with an escape from my reality, so it was books that I turned to for this wonderful young man. My journey is ongoing and I have come across some books that I think will be great for my friend's son, what I didn't expect to find, however, was a book that held some pieces of myself, of one of my former selves. I wasn't looking for answers for myself, and I'm not sure that that is what I inadvertently found, but this book that fell into my life (twice in one week, in fact) did hold something that I didn't know I was missing. I don't have a name for what I found, but I am glad that I found it.

The book that held all these unexpected piece of myself is Speak by Laurie Halse Anderson. Many of you are probably familiar with this book, but for some reason I was not. And Speak has been sitting in my room (and a second copy downstairs... I have two somehow) for a couple of weeks staring at me, literally as the cover has eyes on it, and demanding that I say something about it.

Speak tells the story of Melinda who experienced a trauma over the summer and as she enters high school, as a freshman outcast with no friends, she slowly becomes selectively mute. As the story unfolds we first suspect and later have confirmed just what her trauma was, why she has become an outcast, why she chooses not to speak, and then, ultimately, why and how she finds the strength to find her voice. It is beautifully written, I cried though much of it and then rejoiced with Melinda as she started to piece her life back together. There are many things about Melinda that I do not really identify with, but there are some other things that scream out from my past through her. This book probably holds, at least in some small way, pieces of all of us, but I needed Melinda. She, somehow, cracked open old wounds and helped heal them both at the same time. And all this came when I wasn't looking for it, when I didn't expect it... strange how that sometimes works isn't it?

And so there you have it, not really my typical post but Melinda is appeased and has stopped knocking around in my skull. If you read, or have read, Speak I hope that you come away with a little something, I think it would be hard not to. There are many things in the world these days that could make us want to hide and not speak, but even on the rainiest day, there are also things and people who give us the courage to stop hiding and find our voices.

The Good: I was up at Mayo having a bunch of tests done and meeting with my oncologist a couple of weeks ago and things are looking good! Well, things are looking stable but to me, that is good. My liver is healing from the surgery, the are no signs of new tumors in my liver right now, the tumors in my lungs haven't grown radically in the past six weeks that I have been off of the chemo, in fact, the look to be mostly about the same size that they were on my last visit, I have been cleared to start my chemo again, and I don't have to return to Mayo for a check-up for about 3 MONTHS! Yea!!! Three months may not seem like long, but to me it is a long time and the rest of my summer is Mayo-free!

The Bad: I still have cancer. Blah. And so do so many, many others. Double blah.

The Perplexing: I have been thinking lately about how, so often, people, friends, will tell me about some trouble in their life, some sorrow that they are experiencing and then feel the need to follow it with something like, “But it's really nothing compared to what you're going through.” or “But don't worry about me, you have enough to deal with.” WHAT?! Truly people, it drives me banana sandwiches when you do this to me. Sorrow is sorrow, end of story. There is no comparing sorrows and judging that one is harder to endure than another. Big or little, lasting or short term, every sorrow is valid and hurts just as much as anyone else's sorrow. And just because I have some sorrows of mine own doesn't render me incapable of listening to or trying to help with someone else's sorrow. In fact, it hurts my feelings a little bit when people assume that, because of the events in my life that, I would feel that it would be a bother to hear their troubles. Quite the opposite is true. I want to listen, I want to help if I can. Sorrow is sorrow. So many of you have helped me carry my burdens, please let me help you with yours as well.

Troubles are everywhere it would seem but, even on the rainiest day, there are still joys to share and friends who will help us through our sorrows even if they have sorrows of their own.

Back, long before I had this lovely blog, I kept a blog on my MySpace page. I recently went back and re-read some of my old posts and for some reason my old "Swamp Castle" post keeps popping into my head. So I thought that I would re-post the "Queen of the Swamp Castle". I originally wrote the post on April 13, 2007, some stuff has changed since then, but much is the same. So here ya go!

There's a quote from Monty Python and The Holy Grail in which the "Lord of the Swamp Castle" (for lack of a better name) is telling his son about the castle which he will inherit. A rather funny scene and the quote goes something like this:
"When I first came here, this was all swamp. Everyone said I was daft to build a castle on a swamp, but I built it all the same, just to show them. It sank into the swamp. So I built a second one. That sank into the swamp. So I built a third. That burned down, fell over, then sank into the swamp. But the fourth one stayed up. And that's what you're going to get, Lad, the strongest castle in all of England."

Lately I have been having some rough days. I have been feeling like this stinking cancer keeps taking things away from me. It started with three quarters of my liver but the damn greedy things wasn't content with that and has sneaking in regularly and taking other things. Next it was my hair, I know it sounds stupid, but oh, how I miss my long hair. And the loss of my hair in combination with the gifts of an 8 inch scar on my abdomen and a body that I swear the switched on me at the hospital, cancer has managed to take a lot of my self-confidence. Okay, I know that self-confidence can't really be taken without my relinquishing it in a way, but... Well, imagine looking into the mirror and seeing someone who you know is supposed to be you, but doesn't look much like you think you should look... It's just an adjustment, I know, but it's one I don't understand why I have to make it. And so the Swamp castle sinks into the swamp. Then cancer sneaks in and takes peace, stability, and that beautiful (although false) sense of being young and having all the time in the world to do and accomplish things. I'm 30. A decent number of years, but still not an age where you would think that perhaps the majority of your life is behind you. Now, I don't know and that uncertainty is enough to drive anyone crazy. Trips to Mayo for check-up are dreadful things. Will I be granted another month or two of relative freedom or is it back into the hospital for some delightful treatment? Some days it's a battle to push away the thoughts of the worst and all the "what ifs" and to just live... to just be like everyone else. And that stinking Swamp Castle sinks again. And then in a sly, stealthy attack cancer has managed to pick away at my job, part of my identity, and something I worked hard to build and was proud of. I am not working currently, I am on disability leave from my teaching job. Now, despite some annoying things, I really did enjoy my job and it does bother me that I don't have that right now. And to add insult to injury, the way my classroom is currently being run is... well, not the way I would do it and so much of what I worked so hard to put together has been taken apart. And I don't know when or if I'll go back to teaching, I hate that. Teaching has been such a big part of my identity. Again, I know this sounds stupid, but if you think about it we do tend to use our occupation as part of our definition of who we are. Crap, where did that damn Swamp Castle go?! Some things that cancer takes are less obvious or harder to explain. Like having friends who have cancer. Just having a friend who is sick, sucks. But when they start doing worse while you are still doing relatively well... There is a weird guilt to that, plus the pain of knowing what they are going through and what their family is going through. (Please keep my friend, Karen, in your thoughts and prayers) And among the harder to explain things is the despair or just overwhelming sadness that cancer seems to be able to set upon you without notice. Thank God it passes, but while it lasts it is miserable. For those of you who know me well, those are the days that I cry at everything. I hate those days, despite what my husband might say, that's not who I am and certainly not who I was.

It gets tiring to keep building the castle over and over and there always seems to be something else to cause it to sink, or as it has felt over the past few days "burn down, fall over, then sink into the swamp". But build it I do and each time I do so I think I learn something and hopefully make my castle stronger. Of course, one is apt to wonder why anyone would continue to try and build a castle on a swamp. But sometimes your solid ground gets snatched away from you and a swamp is all you have. Then the choice becomes do you just sit in the muck or do you build castle after blasted castle? I, as I imagine you would, choose to build. And one of these days the damn thing is going to stay up...

Hey, I know it's been awhile since I last posted anything but there has been much going on. I went back up to Mayo on April 29th and met with my oncologist and the liver surgeon and it was decided that surgery to remove the tumors in my liver was possible and that it would be scheduled for Monday the 4th of May. So we went back home for two days and packed then returned to Minnesota on the evning of the 3rd. With me I had, my husband, Eric, our beautiful little girl, Kylynn, my mom, and my sister, Julia. It was nice having so many people along. Kylynn really wanted to come with this time, and truth be told, I really wanted to have her close by so I am glad that there were enough people there to help with her and be able to come see me.

I get nervous about any surgical procedure, but this surgery was going to involve a 7 and a half inch incision in my abdomen and so I was a bit beyond nervous. Plus, I had never had a full blown open surgery at Mayo before and so the process was all new to me and I was not able to see my daughter, husband, or sister before surgery. I did get to see mom but only for a short time and only because she got up at the crazy early hour and went with me. I was the first surgery of the day and the procedure went well. I was back in my hospital room before early afternoon and I would like to say that I was resting comfortably but I was miserable. I was really sore and uncomfortable for most of my hospital stay mostly due to my incision and my limited options of pain meds. Stupid allergies. Anyhow, I finally got released on Thursday afternoon and had a LONG car ride home. Since, I have been staying at my parent's house as Eric needed to return to work and I need help with Kylynn. I am getting better slowly, each day is a little better, but I can really tell if I over-do it one day because the next I will be sore and exhausted. On the plus side, I did get to see all 4 for my sibling in one weekend, all together actually. My sister, Amy, and her family came up from Tennessee to see me and my big brother, Ken, was in town from Michigan with his wife and came by to see me. And then my sister Julia and my little brother Jeff who live near by were around. It was really nice. I know that it may sound silly and that many may not believe it, but my siblings are my best friends and I love them all very much!

All of this makes me think back to January of 2006 when all of this started, and when I had my first open liver surgery here at a Chicago hospital. Back in 2006 I went into my surgery asuming that this would be a one time thing, that they would remove the cancer, and that I would return to my "normal" life. Sitting here, a little more than 3 years later, I wonder if this is going to become my "normal"? I sure hope not, and I know that upstairs right now there is a beautiful little girl who has been praying for it not to be. I do know now that this isn't a cancer that we can just remove and be done with, it is not a cancer that knows remission, it is not a cancer that is common and has a set course of treatment. But I have beaten the odds so many times already, my liver has put up with more than any liver should have to, and keeps functioning well. I know that I am going to keep fighting. And most importantly, I know that Our God is a God of miracles and ultimately this is all in His hands. I will trust in Him.

It has been a long couple of weeks. I am sore and tired. My husband and family are stressed and tired. My sweet baby girl is praying every night for her "mommy's tumors not to come back." It is all overwhelming. But even on the rainiest day my husband, daughter, and whole family are there to hold umbrellas of hope and encouragement for me and God is there working on a beautiful rainbow for all of us, even if we can't see it yet.

To say that it has been stressful around here lately would be seriously understating things I think. My husband likes to say that I have a flair for the dramatic but I am happy to report that most of the drama around here in the past weeks has not really come from me. That's not to say that I purposely create drama, because, believe me, my life seems to provide more than enough without help. It just seems that, though no fault of my own, a lot of that drama tends to center around me... or at least around my liver and lungs. And I am, by no means, saying that any of the drama in the past couple of weeks has been purposefully created by my husband. It hasn't, it's just that recent drama has centered around him and his side of the family. Then throw in a little drama that my car cooked up and daily life with Kylynn (now that girl does create drama on purpose, but she's four and a half and much like her mother was at that age...) and you'll see that there just hasn't been any time for any of my medical drama. And that is okay... or at least, mostly okay. I certainly do not begrudge my husband any of stress or anxiety that goes hand in hand with the situations that he has to deal with and I commend him on how well he is doing with all that has been thrown at him. But I will point out that just because my "stuff" is getting sort of pushed to the back burner doesn't mean that it doesn't creep into my thoughts or that, if we mostly ignore it, my trip back up to Mayo and the very real possibility of a tough surgery will go away. It basically just means that I have been trying to process all of my personal drama on my own. And, like I said, that is okay, or, at least, mostly okay because I generally do process most of that stuff alone. It's just that sometimes I would like the option, the possibility of not doing this on my own...

But, amid all the drama, we received an unexpected and very pleasant surprise yesterday. Amongst all of our other mail there was a plain hand-addressed envelope addressed to me with no return address. When I opened that envelope a check made out to my family, along with a type written paper fell out. The paper explained a little about Coach's Crew Foundation which is an organization that was started by the 5 children of Walter and Helen Barnick to honor them and keep their giving spirits alive. The foundation holds a bowling event every year to raise money for many different organizations such as the American Cancer Society, American Heart Association, American Lung Association, National Foundation for Cancer Research, and many other worthy causes. Coach's Crew also will sometimes help individual families, like my own, who are in need of financial assistance. Now, I have to admit that, up until yesterday, I had never heard of Coach's Crew but thank God for these people. What an unexpected blessing! And though I really have no clue how this foundation got my name, it makes me feel so very loved to know that I have so many friends out there that are concerned and have done so much to help me and my family though all of this. If you ever have an opportunity to donate to Coach's Crew Foundation and are able to, please do so and help spread love and hope to others.

It would seem that even on the rainiest day, when the troubles of life threaten to pull you under, if you hang on, a friend will show up to offer you a hand, a hug, and sometimes, unexpected gifts.

Cancer, it seems, has become such a part of my life that most days I don't stop and think too much about it and its realities. Being tired, taking horrible medications, traveling to another state to see a doctor on a regular basis, feeling crappy, having less money and more medical bills than I'd like, fear, uncertainty. It's all there, and I am aware of it, but it's been my life for three years and it's become my "normal". So most days I don't stop and examine it all too closely. My life has changed, drastically, and there is nothing that I can do about it except try to remember all that I do have and keep moving forward. But some days it feels like it is all crashing down on me. Some days I look around at others my age and can only see the differences.

I am not at a beginning as so many of my family and friends are, but I am not really at an ending either (at least, I hope not). So where, exactly, is it that I am? Some weird middle area that has no real definition it would seem. Sometimes I feel like I am in a corridor full of doors and as I walk down the hall, door after door closes. Some slam loudly. Others quietly click shut. Still others seem as though I am going to be able to reach them and pass through only to close right in my face. My corridor does, however, have windows that look into each room. I can see, and participate to an extent, in the events behind the closed doors. And that is both blessing and curse. I continue to travel my corridor and I expect that I will someday find, not a doorway that I will be able to enter, but a window that is open... or maybe just a window that I can pry open. And through that window I will find a new path. Maybe a new beginning, maybe an end with a new beginning, but whatever waits through that window is what keeps my feet moving through this corridor of closed door and strange middleness. That window is my hope, but until then, where exactly am I?

More thoughts on this later. Getting late tonight. I must say though, that despite the closed doors and the feeling of displacement, of not belonging, even on the rainiest day there is the hope of an open window.

Death is no stranger to me. That is to say,I have lost many loved ones to death, most within in the past two years. I know death well in its loss and sadness, and for that I hate death. I also know death in its belief of something more and better, and because of that I accept death. Death is no stranger to me. Dying, on the other hand, has never really moved past the stage of acquaintance with me. Mostly I think that is because dying scares me. But dying has been "hanging around" lately, in a manner of speaking, and so I have been making an effort to get to understand it a little better.

In the past year I have sat with two dying friends, Liz and Cathy. Liz, when I was with her last, had about a month of her life left. Cathy, when I last saw her, only had a week. Both dear friends knew that they were dying soon and both, though they might not have realized it, taught me lessons in dying. Liz, when I went to visit her and her husband in Maine last year, was in the last stages of cancer. I knew that when I went to see her, it is why I went to visit when I did, and still my mind fought against the idea of dying. I couldn't wrap my mind around the idea of losing Liz, and so the lessons seeped in but waited quietly until I was more ready to hear them. Liz and I talked a lot in the few days that I visited, or more accurately, Liz did a lot of talking and I did a lot of listening, and that's the way it needed to be, the way it was supposed to be. We talked about everything. The peace she had in her faith. The anxiety she had over leaving her husband and children. The ways she wanted to be remembered. Even the ways that she could feel her body dying. And, of course, there was happy talk to. Memories, stories, and shared experiences. And when I hugged Liz before I left I knew that I was hugging her for the last time, but my mind didn't allow the reality or poignancy of that moment to seep in until much later... until now, after Cathy's death.

Cathy, like Liz, had been suffering from a major (but different) illness for quite awhile, but unlike Liz, Cathy lived near to me and thus afforded me more opportunities to spend time with her. With Cathy the talking about her dying came over a longer period of time and in smaller ways. She, like Liz, also had great peace in her faith and concerns for her family. She also had ways she wanted to be remembered and observations about physical changes in her health. But all of that came dilluted over more time and wrapped in happy memories. And with Cathy it seemed that we had a more sure idea of when she was going to die. I knew, with more confidence than I did with Liz, that my last visit to her was my last, and Cathy knew too. Cathy came home from the hospital to die in her home. She came home with purpose and sent out word that she wanted everyone to come say good-bye. When I hugged Cathy for the last time the reality was all there and while I didn't want to accept it, somehow I could and knew it was okay. And that being okay somehow made Liz's death okay. I can't seem to find the right words to explain it. It is almost as though Cathy's peace and acceptance of her death combined with Liz's different kind of peace and acceptance and somehow the combination has given me some peace and acceptance. I am heartbroken, but have a new peace. A peace and a little bit better understanding of dying.

Dying is only a little bit more than just an acquaintance to me, and I'm okay with that. I'm not sure I want to understand dying too well. But I have sat with dying, listened to it, let it sit with me, and have less fear of it now. And that is something... though I must say, it doesn't seem like much when you are left still grieving, but it is something none the less.

And so, even on the rainiest day, there is peace and understanding if you allow yourself to sit with some sorrow.