Monday, December 21, 2009

Finding Christmas

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.

Wednesday, December 9, 2009

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.

Tuesday, November 24, 2009

Even though my birthday is in September and I knew about my present in August, my gift arrived last Thursday evening sandwiched between two trips up to Mayo Clinic for chemo treatments. As noted in an earlier post, my daughter and I have been long time fans of the singing group Celtic Thunder. This past Wednesday Kylynn and I made our way down to my sister's house in Tennessee and on Thursday evening we took our places in the front row of a Celtic Thunder concert. Yes, front row, that was my gift. Well, that and being able to share the experience with my little Aria, and what an experience it was!

Kylynn and I arrived in down town Nashville quite early before the 7:30 performance so we set off for a bit of a walk around the area to see what we could see. The concert was at the TPAC, The Tennessee Performing Arts Center, and as we walked around the building Kylynn was quick to spy the Celtic Thunder equipment trucks parked in the loading dock. Kylynn was excited about seeing the trucks and would have likely enjoyed watching them being unloaded, but being that they were parked inside a garage like structure watching was not possible. So we continued around the building. Turning the corner we were greeted with the sight of all of the tour buses lined parked along the side of the building. I explained to Kylynn that the guys were on those buses and she literally stopped in her tracks and stared. "Damian is on one of those buses?", my little girl asked in amazement. (Damian is Kylynn's favorite in the group) I told her that indeed he likely was and this started Kylynn wondering what Damian might be doing right then as we were walking by. Of course, knowing that she was in such close proximity to 5 people that she idolizes also made Kylynn quite nervous and she asked if we could move away from the buses. And so we continued our stroll around the area.

This part of our walk took us into a bit of a surprise and our only non-Celtic Thunder related part of our evening. Kylynn and I decided to try to find a place to sit and rest for a bit and this led us to some benches that are located across the street from the Hermitage Hotel. As we settled ourselves we noticed a group of about 5-6 people standing across the street from the hotel holding multiple hockey related items, wearing New Jersey Devils jerseys, and staring at the entrance to the hotel as if waiting for something. My little brother, Jeff, is a huge Devils fan and, consequently, so is Kylynn. She recognized the jerseys right away and asked what the people were doing. Now, I enjoy hockey but I had no idea if the Devils were in town for a game or not, so I got on the phone. I tried my brother first and got no answer so I called my sister, Amy. She looked it up and indeed the Devils were in town for a game that evening. So we sat and watched the people who were watching the hotel. Within about 10 minutes 5-6 men in suits emerged from the hotel and the Devils fans descended upon them. I don't know the players by sight, I tend to need them in uniform with their names across their backs to recognize them, but by the actions of the others I was fairly certain we were looking at some of Jeff's and Kylynn's favorite players. We had nothing really for them to sign and Kylynn was being shy about going over by them, but we had a good time watching. And then Kylynn said, "Maybe they're here to see Celtic Thunder!" I told her that I was fairly certain that they were here to play a hockey game, but her comment made me laugh. By this time the sun was starting to go down, we were becoming a bit chilly, and so we set off to get our coats from the car and eat some dinner.

After eating it was about time to head to the theatre for the show. We were still early and this provided us with time for Kylynn to dance around the lobby of the TPAC with her curls bouncing, proclaiming herself an Irish dancer and then when it got too crowded for that, for us to work our way through the line and purchase Kylynn a program and a couple of posters. Purchases in hand, we made our way into the theatre and found our seats. Wow! I knew our seats were good, but wow! Kylynn just stared at the stage with amazement for quite some time. When she finally did speak it was to ask if the guys were going to be right there, right in front of us, almost close enough to touch. I told her that yes, they were going to be right there and that she would be able to see them really well and that they would be able to see her. She enjoyed that thought for a bit but then became a little nervous. My Kylynn some times, and I don't know why, gets nervous about getting attention from people who she really does want attention from. In any case, soon the lights were dimming and the show was about to start.

Kylynn climbed up on my lap as the first notes of "Heartland" rolled over us, her eyes wide with anticipation. As soon as the guys walked out on stage I felt Kylynn jump a little and then she turned her face up to me and whispered, "Damian is right there, Mommy. He's so close." And the look on Kylynn's face when the guys walked up to the edge of the stage for the first time was just priceless.

All five of the guys were fantastic that evening, but then, we expected no less. Sitting in the front row provided a bit of a different listening experience for me and, once I got used to it, it was quite enjoyable. Having never sat in the front row for anything like this I had no idea what to expect and it took me a few moments to figure out why everything sounded a little different to me. Then I realized that I was sitting close enough to be hearing the guys unamplified and then also amplified sort of at the same time. It was a really cool experience. Also, because of where our seats were, I was able to pick individual voices out of the group when they were harmonizing. Some voices I can pick out all the time, like Ryan's, but others, like Keith's is harder for me and so it was a real treat to be able to experience that in songs like "Danny Boy" and "Steal Away".

Each of our five guys wowed us in their own unique way. Keith sang "Castles in the Air" to start off and over the past 6 months the song has really grown on me so I enjoyed it quite a bit but more than the words, I enjoyed Keith's guitar playing during the song. We also heard "I Wanna Know What Love Is" from Keith as well as "Lauren and I" and the addition of Keith singing "Homes of Donegal" was a fantastic choice. Paul, with his rich tenor voice, took our breath away with "Remember Me" and I loved the addition of "Because We Believe" but, as it was last time we saw him, Paul drew us all in with "You Raise Me Up". The lady next to me had made a comment to me and Kylynn saying that kids seem not to like Paul as well as the others in the group. I'd have to say that I don't know that that is really true, and Kylynn answered with, "I like Paul, he has a pretty voice" (Paul, she really means that as a compliment) and Kylynn sat through each of Paul's songs with rapt attention and her hands folded in her lap. Paul also pairs up with Ryan to sing "That's a Woman" and I must say that Paul is very entertaining in that song. I love that the guys get a chance to show some of their personality and humor in the show and Paul makes me smile every time! And speaking of personality, Ryan was in fine form in Nashville. How anyone can sing lines like, "They say I'm the Dark Destroyer.", "They call me a romancer, a chancer, a gigolo" and "Welcome to the pleasure dome!" without laughing, I'll never know, but Ryan does it and some how makes women swoon while doing so, now that's impressive! But seriously, Ryan brings such character to all that he sings you can help but enjoy every bit of it. "Ride On", "Desperado", "Every Breath You Take", and especially "Heartbreaker" and "That's a Woman", Ryan delivered an excellent performance and I very much enjoyed seeing it up close. Incidentally, the one bit of Ryan"ness" that first sparked my interest in him and that still strikes me as showing a little bit of who Ryan really is, I only have ever seen in the first 2007 DVD, though there is a moment in "Ride On" that comes close. Now my little Aria's favorite guy is young mister Damian and he also gave us one fine performance. I enjoy all of Damian's songs but the one in this show that I feel is best suited to and showcases his voice best is "Steal Away", well done Damian! Of course, I absolutely love listening to "Come By the Hills" and getting to see Kylynn sing along with Damian in Gaelic to this song was so much fun! And I will forever remember Kylynn slipping her little hand into mine and lacing her fingers around mine while Damian sang us "A Bird Without
Wings". And Damian made such an effort to smile at Kylynn and tried very much to involve her, of course, Kylynn was being shy about getting so much attention from someone she idolizes so much, but the effort was much appreciated and now, Kylynn tells the story all the time about how Damian smiled at her. Out of the whole evening though, I have to say, that George made my heart the happiest. As it always is, George's singing was wonderful. I love "Working Man" just love it! And "500 Miles" was a huge hit, Kylynn was even clapping and singing along! George brings such emotion to "The Old Man" and I was pleased to hear it again in this tour, and I think that it is George who sets the tone for "Ireland's Call" and "Caledonia". But beyond his singing, George shown extra bright for me by smiling and waving to Kylynn during the concert even though she was being shy, and by kneeling down on the sidewalk after the concert by the buses, taking a minute to ask what Kylynn's name was and then addressing her personally. Not only did this make me, as a mother, so happy, but it really made an impression on Kylynn. She talks about it still and will say, "George knows my name now." and "George has a little girl just like me and so he really likes me." It is all very adorable and is something that she and I will both remember forever. Thank you so very much, George.

After the concert we had to walk back past the buses to get to the parking garage and, even though we
really aren't supposed to, Kylynn and I stopped and waited with the group of people already gathered to see if we could meet a couple of the boys. It was not a long wait before Keith appeared and graciously signed autographs and posed for pictures. Kylynn was still unsure about meeting any of the guys but Keith was very kind to her and said, "I would really like a photograph with you." and so Kylynn allowed me to pick her up so someone could take her picture with Keith. (Sadly, none of my pictures with the guys turned out, but we did get autographs!) Next to appear was Ryan who also had kind words for Kylynn. He asked her if she was in the front row and then said that he saw her there. That made Kylynn smile. Then George came out and, as I mentioned before, he got right down by Kylynn and had a little chat with her. Such a sweet man! Paul and Damian were doing the Meet and Greet which, sadly, we did not have tickets to. We got to see them briefly as the came out of the building but were not able to meet them. I was a little sad Kylynn didn't get to get Damian's autograph but she was okay with it though and reminded me that he smiled at her during the show.

And so ended a great evening. Kylynn was asleep before we even made it out of the parking garage and so I was left in pleasant silence to ponder and smile about our evening's experiences.

Even on the rainiest days, days that are filled with chemo appointments and days that I just spend feeling horrible, there is the memory of beautiful evenings spent making memories with my baby girl and the hope of many more to follow.

Thursday, November 12, 2009

T-shirts For Sale!

Hey, Even On The Rainiest Day blog readers (this would be YOU)! This is not Rebecca posting. This is her younger sister, Amy. I have momentarily hijacked her blog to share something with all of you who know (even if it’s via the internet) and love Rebecca.

Rebecca has been bravely battling this (stupid) cancer for almost 4 years now. Wow. As I write that, I can hardly believe it’s been that long. Every day we’re given with Rebecca is such a gift. Every day we’re given with any loved one is a gift, but sometimes circumstances make us more aware of that gift.

This cancer has changed so much for Rebecca, and it has changed much for all those in her life as well. Some changes have been blessings in one heck of a disguise (think Hollywood special effect department kind of disguise). And then obviously, there are changes that are also very, very unwelcome.

Cancer isn’t usually satisfied to attack only the body. We have discovered that it likes to attack the mind, the spirit, relationships, finances… Whatever it can get it’s grubby little mitts on. That’s not to say cancer will win any of those battles, but it sure tries hard!

We, Rebecca’s family, have taken up our swords, nunchucks, bazookas, and Chinese throwing stars in an effort to help thwart off cancer’s evil attacks. We’re hoping you can help with our latest retaliation.

We have designed these super-cool t-shirts to help both Rebecca’s finances and her spirits! The words on the t-shirt come straight out of this blog post from Rebecca. You can help by purchasing a t-shirt (they’re only $20 each) and then wearing it proudly for Rebecca! Let’s let her know that we love her and support her. (If you don’t live near Rebecca, perhaps you can send her a picture of you sporting your t-shirt?)

Let’s think of these t-shirts as a kind of suit of armor. Gear up! And let’s help Rebecca kick some cancer butt!!!

If you order a t-shirt, please also send me an e-mail so I know as the paypal is linked to an account that isn't often checked. Thank you.

Saturday, November 7, 2009

Kylynn and Ashe

So Kylynn has been asking me for quite awhile when she can start to learn to play the harp. I had decided, after talking with my harp teacher, that I would start teaching her myself and when she get a little bigger I would start formal lessons. So earlier this week I ordered a book of harp music/lessons that Carl, my harp teacher, recommended and yesterday it arrived at my home. Kylynn spotted the book first thing this morning and, once she realized the book was for her, has done little else except sit and play the harp with me, or ask endlessly if we can play the harp again. While I love that she is loving it so much and that she is so good (so far) about taking instruction from me, it is a bit exhausting. But still, she is so darn cute and so excited.

In any case, I fear that Ashe is no longer just mine. Though he is bigger than Kylynn is she has claimed him as hers as well and explained to me that I will have to share so that she can practice. But even though I will have too share my beloved harp, I am happy. I am very happy that Kylynn wants to play the harp because her mommy plays the harp. And I am glad that she wants mommy to teach her. So you see, even on the rainiest days, there is sunlight that our children bring with their enthusiasm, joy, and flattery in wanting to be like us.

Wednesday, October 14, 2009

Quiet miracles

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!

Friday, September 18, 2009

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%
Reading these numbers Becca-style would go something like this:
  • 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.
Sometimes having bile duct cancer is a very lonely thing. There are no bile duct cancer support groups because there just aren't that many of us who have it and for those of us who do, the outlook is grim. There are no foundations or research groups that I know of dedicated to bile duct cancer. We are a relatively unknown cancer population. And being young and a woman has put me in an even smaller group. I enjoy being unique and all, but this particular uniqueness I could do without. The odds sound grim, but whenever the odds get me down I think of my Star Wars buddy, Han Solo. In The Empire Strikes Back Han considers flying the Millennium Falcon into an asteroid field to escape the Empire. When C-3PO hears this he informs Han that the odds of surviving in an asteroid field are about 3,720 to 1, and my man, Han, responds with, "Never tell me the odds!" And I agree, I don't want to know the odds. It doesn't matter what they are, they are just numbers, and I am not planning on giving up just because the numbers think I should.

Even on the rainiest day, when it looks like all the numbers are against you, you can still choose to defy the odds. And defy them I will!

Friday, September 11, 2009

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.

I do love that post. I love it for many reasons. First, all of those places still have a pull on me. I love just thinking about them! Second, that post, though it was not at all my intention, sent me and Eric on our way to Ireland in October of 2007. My sister, Julia, and her husband, Kelly, read my post and rallied my family and friends to fund a trip for us to see some of Ireland. And what an amazing gift that was! I got to see the Cliffs of Moher. I got to walk about Connemara. And I got to stand on The Giant's Causeway, which was my most favorite part of our trip. I got to see much of Ireland and perhaps someday I will take my little girl there. And I love that post because it speaks of my hope that at least a little of me is in my daughter and that someday she will look out over all the places that I didn't get to see and smile knowing that I am with her always and that all is well.

And so, my friends, even on the rainiest day, there are dreams of beautiful places, memories of what we have seen and experienced, and the hope that those we love will always carry a piece of us with them no matter what the future brings.

Friday, July 31, 2009

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.

Thursday, July 16, 2009

5 years and 9

The past few weeks have been busy and full of all kinds of summertime happenings. My youngest sister, Amy, was here for a couple of weeks with her son, Isaac, and her husband, David. They were here over the 4th, which is a celebration all on it's own, but which also happens to be Isaac's birthday. He turned 1 this year and I was so happy that I could be there for that! While my sister was here we also did a lot of picking up and sorting items for the huge garage sale we are planning for the end of next month to help raise funds for Amy and David to adopt their children from Ethiopia. But most notably, for me at least, in the past couple of weeks was Kylynn's 5th birthday. It's so hard to believe sometimes that my baby is five. She's growing up so fast! She has gone from an adorable tiny baby to a little lady seemingly overnight. I am so proud of all the things that Kylynn has accomplished in the past five years. She amazes me everyday. Some of the things she says are so insightful and beyond her years, other things she says are just downright funny. She is a wonderful little girl and I am so blessed to have her.

Kylynn turning five also makes me think back to how little she was when I was first diagnosed, she was just a year and a half old. Too little to understand what was going on but old enough to sense the change and feel the worry. Back then I would alternate, in my mind, between whether it would be better if I died before Kylynn was old enough to really remember me and worry that if I died, Kylynn wouldn't remember me. But here we are, three and a half years later, and now I worry about what my death would do to Kylynn because she is definitely old enough that she would remember me. I don't really fear death, but I am terrified of leaving my sweet Aria.

Another very notable event in my life recently is my 9th wedding anniversary. Nine years, wow! When Eric and I started our life together I know that neither one of us ever thought that it would take the twists that it has. I remember our first crappy apartment and me starting my teaching career. I remember being pregnant with Kylynn and how excited we both were. And then we closed on our first house and Kylynn was born 6 days later, that was a wild time! Eric and I have had some wonderful memories over the past years and more than our share of difficulties. It hasn't always been easy, but here we are still together. When we said, "In sickness or in health" when we were 23 we had no idea that it would be put to the test when we were only 29. It's rough, very rough sometimes, but we're making our way through it together.

Even on the rainiest day there will be sweet and wonderful milestones to celebrate, and sometimes I think they are made sweeter and more wonderful because of the rain.

Wednesday, July 1, 2009

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.

Wednesday, June 3, 2009

Angels for Aria

I recently started a new special little thing with my sweet little Aria. (For those who don't know, Kylynn's middle name is Aria and I often called her by it, or sometimes shorten it to Ari. She answers to it for me. It's another one of our special little things I guess.) Since she was a baby, at night, after she was asleep, I would go into Kylynn's room and pray for my little girl. Recently I started printing out pictures of angels and leaving them in Kylynn's room with my prayer for her that night written on the back. Kylynn loves this. I love it too, but it does make me a little bit sad also as I find myself, not just praying for my Squeakers (again, a Kylynn nickname), but also trying to write something meaningful and instructive for her. It's hard to explain so I'll give you an example of what I write for Kylynn:

May 18, 2009
Mommy prayed for you tonight, Kiki. I prayed that you may always have hope no matter what life might bring you. Sometimes life throws some rough stuff at us, but if you hang onto hope and your faith, darling daughter, you will always find a way through.
I love you more than anything!
Sweet dreams, Kylynn, and God bless you always!

After my surgery I was staying at my parent's for a bit and it was usually my mom who would read to Kylynn what I wrote on the back of her angel pictures. One morning after reading to Kylynn my mom came to me and said that she thought it was a good thing, what I was writing for Kylynn, but that it also made her sad because she felt like I am trying to prepare Kylynn for a time when I wouldn't be here anymore. That is exactly why it makes me a little sad too, and it is, indeed, part of why I started doing the angel pictures for Kylynn. My sweet little girl has an amazing relationship with God for someone so young and I want to encourage that in her. I also want her to know that I pray for her all the time. I, also, want to teach and tell her somethings now so that if anything happens to me she will have that knowledge and faith to draw on. And when I'm gone she will have all her angel pictures and mommy's word to keep forever.

But my pictures of angels are not the only angels that my Aria has. No, hardly. My little girl has more angels than she will probably ever know. It has been my wish that Kylynn go to St. John's school when she starts kindergarten in the fall. My reasons for this are many. At St. John's, I feel like Kylynn would have more support and understanding as she tries to deal with her mommy being ill. There is only one class of each grade at St. John's so Kylynn would be with the same kids year after year and I hope that would give a group of friends that become close, like a family, and that those friends can help Kylynn through any troubles she may face. Kylynn has such a strong faith already, I want that to be part of her everyday life. I think the quality of education and amount of personal attention Kylynn would receive at St. John's would be much greater than what she would receive at a public school. The list goes on and on. So Kylynn was enrolled at St. John's and my husband and I took up the worry of paying for her education in addition to all my medical stuff and just the everyday stuff. It was going to be a stretch for us and possibly an impossible one, and then, angels descended into our lives. Some of my dear, dear friends, Michele and Sheli in particular, took up the cause of raising money for Kylynn to go to St. John's and soon after they did Kylynn's little life started to just swarm with angels. Friends from high school that I haven't talked to in years (special thanks to you, Joe!), other friends, friends of friends, relatives, and strangers have all come together to help make my wish for my daughter a possibility. I am overwhelmed by everyone's kindness and just so very, very grateful. There are not words enough to express just how much it all means to me and how very touched I am by it. My Aria is blessed to have so many angels in her life, and so am I!

And so, even on the rainiest day, there are angels to be found everywhere! They may wear the disguise of stranger or friend, you have but to look closely and you will see them.

Tuesday, June 2, 2009

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...

As I mentioned, a few things have changed since I originally wrote this. My friend, Karen, who I mentioned passed away just two short months after this was written, leaving behind two beautiful little boys and her sweet husband, Ed. I, still, am not back teaching and it looks as though I may never return to that part of my life. I really do miss the children I worked with and my two fabulous assistants, BUT now I do get to stay home with Kylynn and spend what energy I have on her, and that's a good thing. Despite the fact that my hair is finally below my shoulders again, I do sometime still miss my old hair, my long red hair, but at least I have hair and I am starting to look more like I used to. The emotional stuff that has to do with cancer is still all the same and I suspect that it always will be. I live in a constant state of "not knowing". I do have days where it is just overwhelming and I do have days where I just cry, but for the most part, I like to think that I have adjusted to the "new normal". In the end, I think cancer is always going to keep trying to knock down my swamp castle, but , with any luck, my rebuilds are getting stronger and one day, not too long from now, my castle with stay up despite what cancer throws at it.

So I would have to say that, even on the rainiest day, when the swamp is the muckiest, there is still the comfort that I, at least, have a castle and that this time it just might not sink into the swamp!

Friday, May 22, 2009

This post has been floating around my head for a long time but due to health issues hasn't made it to the blog until now. Sorry about that.

Celtic Thunder. An extraordinary group of five guys from Ireland and Scotland who have joined together under Phil Coulter and Sharon Browne to form and outstanding singing group. Kylynn and I are big fans. We watch the DVD together. In the car Kylynn always demands to listen to Celtic Thunder on my Ipod, she requests specific songs and sings along, sometimes she sings along in Gaelic. We talk about the five guys in the group as though we know them and call them by their first names. Kylynn actually has given nicknames to two of them. George she calls Georgie and Damian, her favorite in the group, she very affectionately calls Dami. We love Celtic Thunder and so when I saw that they were going to be in Illinois, and not too terribly far away on their spring tour this year, I looked into getting tickets.

I managed to get three tickets, for mom, Kylynn, and myself, and on April 24th we drove up to Waukegan, IL to see our boys. The whole night was a blast! Kylynn was SO excited about actually seeing Celtic Thunder live on stage, but she really hasn't been to any concerts so had no idea what to expect. Sitting in our seats before the show started we were all already having a great time. Kylynn had gotten her Damian t-shirt and her show program and was happy as a clam sitting, looking at the pictures in the program, and having mommy read to her about the guys. And I must say that Celtic Thunder fans, at least where I was sitting (with the exception of two weirdos in front of us), are the nicest fans in the world. Everyone was talking with us and were so nice to Kylynn. One lady sitting next to my mother (who, after learning that the lady was from Minnesota, told her about me and our frequent trips to MN.) has actually kept in touch with my mom and has sent sweet gifts for Kylynn ( a little Irish stuffed bear and another Damian t-shirt!). So before the show even started, again with the exception of Mr. and Mrs. Probably-on-a-day-pass-from-a-psychiatric-hospital sitting in front of us, we were having so much fun. Then the lights in the theatre went down and Kylynn's eyes got huge just taking everything in. She was awed by the lights and the sounds and the mist but nothing can top the moment when she saw the guys come out on stage. Now, like I said, Kylynn loves Celtic Thunder, and like anything that Kylynn is interested in, she has a lot of information about them. She has seen their first DVD a million times, plus she knows each guy's voice just by listening to it. So whenever there was something different in the show than it was on the DVD Kylynn was quick to point it out and ask why. Like I said, she loves Damian and came to the show already knowing that his voice would be different than on the DVD (he was 14 when the DVD was recorded, he is 16 now and his voice has gotten deeper) but the look of excitement of her face when she heard him sing at the show for the first time was just priceless! I have to say that I was a little worried about Kylynn being able to sit though both acts of the show, especially since it was way past her bed-time, but she was so enthralled by the guys that she did excellent! I probably had as much fun watching Kylynn watch the show as I did watching the show myself.

That's not to say that the show wasn't excellent on it's own, it was, it really was. The guys are just fabulous and I enjoyed hearing and seeing my boys live and seeing and hearing the changes that they made for this tour. I love all the guys and think they all are so amazingly gifted, but I have to say that I enjoy Ryan probably the most. He is intriguing and his stage presence is just incredible. I could listen to Ryan sing "Desperado" all day and I am always amused by his song "Heartbreaker", never fails to make me smile. He also sang "Ride On", a song that I enjoy and think he sings very well, but also one that cracks me and Kylynn up because Ryan does this odd squatty stance and arm movement in it (check out the DVD you'll see what I mean). Don't get me wrong, Kylynn and I like it and it works with the song and especially with Ryan's stage personality, but on the 24th Ryan did the "squatty arm thing" no less than 4 times in the song, maybe more. Awesome! Makes me giggle just thinking of it. Thanks Ryan!!! He did, also, sing "Every Breath You Take" which he sang fabulously, but will always be thought of as "the stalker song" in my mind. Sorry Ryan, but even Sting admits that it's a bit of a creepy song. Keith, also a favorite of mine, has a voice and personality that I just adore. He sang "Castles in the Air" just beautifully but I, honestly, miss him singing "Mountains of Mourne". I love the way he sings that song and I could just listen to it over and over. Keith also had some other wonderful numbers in the show. I love him singing "The Island" and "I Want To Know What Love Is" and he also performed "Lauren and I" which he wrote himself. And then there is Paul, who is also a favorite, and he has a voice that is just incredible! He is a classically trained tenor and his range is just spectacular! He sang "Love Thee Dearest" and "Remember Me" with all the power and emotion that is on the DVD, but what really knocked my socks off was Paul singing "You Raise Me Up", wow! He had the crowd on it's feet for that one. Paul also seemed to be in a particularly playful mood the evening of the 24th and he just cracked me up the way he joked with the audience and the other guys. Well done Paul! And George (or as Kylynn would say, Georgie) was fabulous too, he is also a favorite (are you sensing a trend here?). George has this beautiful deep voice and I just adore it! He sang "Yesterday's Men" and did it so well! He also sang "My Boy" which I love but always makes me cry. But what brought down the house was George singing "500 Miles" by the Proclaimers. I would walk 500 miles just to hear Georgie sing that song again, it was wonderful, George at his very best! And last, but certainly not least, there is Damian (or in Kylynn's world, Dami), who is Kylynn's favorite but also beloved by me as well. This kid, he's only 16, has a voice that I am not sure how he contains in his body. Such a powerful, beautiful, and now deep, voice! Damian, charmed us all with his versions of "Happy Birthday Sweet 16" and "Breaking Up Is Hard To Do". Damian is just so adorable when he sings, and as I tell Kylynn, I just want to pick him up and put him in my pocket he is so cute! But the two songs that Damian sang that I really love are "Bird Without Wings", which makes me cry but is just gorgeous, and "Come By The Hills" which is a song I have always loved. Damian starts off "Come By The Hills" in Gaelic and I love that, more than that, I love that Kylynn can sing almost that entire first verse in Gaelic as well. Also, the song, "Come By The Hills" ends each verse of the song with the words, "...and the cares of tomorrow can wait 'til this day is done." I love that. I would like to say I live each day like that but it would be a lie. What I can say though is that for that one night, the 24th of April at Celtic Thunder, all the cares of tomorrow did wait because I was busy having a great time with my little girl and my mom. Thank you Celtic Thunder!

*This just in* If you want a little sample of what we saw at the show go here and watch the clip. Then, if you like, follow the link at the bottom of the page and go pre-order your own copy!

And so, even on the rainiest day, there are people and events that can take us outside of our own troubles, even if just for a short time, and carry us away to happier things and give us moments to remember forever!

Tuesday, May 12, 2009

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.

Wednesday, April 22, 2009

Unexpected Gifts

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.

Tuesday, April 14, 2009

So much has been going on lately and I have been feeling completely overwhelmed. I recently returned from a check-up at Mayo where I received news that I have two tumors in my liver that are growing. One of these two tumors is lying very close to my stomach and would be very difficult to reach without doing an open surgery. So I return to Mayo in a couple of weeks to meet with my oncologist, a liver surgeon, and an endocrinologist to discuss possibilities and likely schedule a surgery. On top of that, my husband's grandmother has been hospitalized and then yesterday moved to a nursing home. That is hard in itself, but my husband is power of attorney for his grandmother and as such has been having to deal with all the logistics of these changes as well as the emotional aspect. AND my car has been causing us no end of trouble finally resulting today in Lulu (my car) being sent for a time-out at the mechanic's and me driving around a weird smelling rental car. That's all in addition to the normal craziness that goes on around here. It's been quite a week!

As a result of all of the craziness, I have been thinking about and longing for the places that make me feel like my troubles aren't so big. One of those places, one of my favorite places, is The Giant's Causeway in County Antrim, Northern Ireland. The Causeway

"is an astonishing complex of basalt columns packed together, whose tops form 'stepping stones' leading from the cliff foot and disappearing under the sea."
The Causeway is beautiful and vast. The sea, at times, comes roaring up and splashing over the stones, constantly washing, yet never washing away, this marvel of nature. That alone can make one and one's problems seem small. For hundreds of years thousands of people have visited The Causeway. They have walked over the same stones that I walked on, gazed out across the same water that I did, carried their own set of troubles to this rocky shore just as I did, and marveled at the grandeur and beauty of it all just as I did. Stopping and thinking about all the people and lives The Causeway has seen and, through its endurance and unchanging nature, linked together also makes me and my own problems seem not so large anymore. And then, The Causeway is a place of legends, legends of giants and how they placed and tread upon the beautiful massive stones. I think it would be very difficult to think about giants and not to feel small.

And so I long to be back in that place of giants. To sit again in The Wishing Chair and cast my troubles and prayers out over the sea. To let the sea spray and wind wash over me and and carry my troubles away. To just sink into those ancient stones and let the enormity and beauty of the place dwarf and humble me. And that is where you will find me tonight, walking where the giants walked and letting my burdens be shrunk and then carried away on the winds that sweep over the coast. And I can't help but think that even on the rainiest day, when my heart is heavy and feeling much too large for my chest, that there are always beautiful and gentle giants, giants of all sorts, that are able to carry me through my troubles.

Wednesday, April 8, 2009

The past couple of days I have been up at Mayo Clinic in Rochester, MN for a check-up. I am still mentally processing the news I received and will write about it all at a later date.

Tonight, instead, I would like to direct you over to the Karen Dove Cabral Foundation website. Karen is a friend of mine who passed away about 2 years ago after a long courageous fight with breast cancer. Poke around the site a bit. Watch the video about my amazing friend. Check out the information, under the events tab, about the Butterfly Ball, sign-up for more information, and if you can, please attend. Karen was a very special and amazing woman and the foundation set up in her honor and memory is a for a fabulous cause, helping young mothers who are battling breast cancer. Spread the word around if you can about the foundation and the Butterfly Ball, I really want this first event for the foundation to be a big success!

Oh, and are you wondering why butterflies? Butterflies are very special to Karen's family and friends. There is a beautiful story about Karen and butterflies that I will share another time, but until then know that whenever those who knew Karen see a butterfly hovering near we feel that Karen's spirit and love are close by as well.

Even on the rainiest day there is the possibility of butterflies, with wings as graceful and beautiful as a dear friend's smile.

Sunday, March 29, 2009

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.

Thursday, March 26, 2009

It has always been a dream of mine to become a knight or a pirate or BOTH. The knight thing I think has to do with the time period and the fact that I'd really like a horse and a sword. The pirate thing I think really has more to do with the ship. I want to sail! I want to sail on a big ship, two masts at least. Of course, if I was a pirate, I don't think I would settle for less than being the captain. Oh, and I get a sword as a pirate too!

My daughter, Kylynn, has jumped right aboard with both of these dreams of mine and I love that. The thing that really makes me smile, though, is how absolutely possible Kylynn believes both the idea of being a pirate and being a knight are. She was just talking about this yesterday and she started off by saying, "Mommy, when we are pirates together..." And then later it was, "When we are knights after we are pirates..." I love that it is when with Kylynn and not if. Kids are great like that.

Kylynn has also been recruiting others to join us as knights and pirates. It is so much fun to listen to her talk to others about these things. It's great also because if we're going to have a large ship as pirates we're going to need a crew. And Kylynn is much like her mom when it comes to being a pirate, she wants to be in charge. She will invite people to be pirates on our ship (meaning hers and mine) and she will sometimes even try to assign them jobs like swabbing the deck or cooking.

But what I really enjoy is listening to Kylynn talk to other children about being a knight or a pirate. Yesterday Kylynn spent the day with her friend, Josh, and she invited him to be a pirate first. Now, Josh likes pirates, so Kylynn didn't have to sell him on the idea at all and they got right into making pirate plans. I didn't catch all the details but I know I heard something about treasure and I swear I heard the word scurvy in the conversation too. And then later in the day the invitation for Josh to be a knight came. Josh is less familiar with knights so Kylynn filled him in on all the details (and believe me, Kylynn has lots of knight details) and soon Josh was ready to sign up, especially if it meant he got a horse and a sword and shield. The conversation on knights went on and shifted a bit to being knights at the Medieval Times dinner/show. Kylynn was explaining to Josh that if they were knights there that their horses would stay at the castle but that they, as knights, would go home every night and sleep at their houses. Josh said that he would want to take his horse home with him which is where the conversation got most amusing. Kylynn kept telling Josh that the horses should stay at the castle and that way someone else would have to clean up their poop (not sure where that logic came from) and Josh kept saying that he wanted to take his horse home. Kylynn asked him how he would take the horse home and Josh said that the horse could go in his car. Kylynn quickly pointed out that a car was too small for a horse. Josh thought about this for a moment and then turned to me and said, "your car is bigger (I have a small SUV) than mine, could you bring my horse home for me?" I don't know why, but that just cracked me up. Kylynn, of course, had to tell him that the horse wouldn't fit in my car either. Their conversation went on after that, but I found it amusing that neither one thought about just riding their horses home.

The conversations that kids, especially my daughter, have never cease to amuse me. And I love that, while they are young, all things seem possible, even likely, to children. Knights and pirates... care to join us?

Even on the rainiest day anything is possible, even the possibility of being a knight or a pirate.

Wednesday, March 18, 2009

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.