Even On The Rainiest Day...

Sometimes I cry. I try to do the majority on my crying alone, but sometimes the tears come when others are around and I just can't hold them back. Sometimes that person that is around is Kylynn. I often try hard not to cry in front of Kylynn because it distresses her quite a bit. She says, "mom don't cry. If you cry, then I'm go into cry. I don't want you to be sad." Of course, sometimes Kylynn has a distorted view of what might make me cry. The weather has been kind of nice lately and I offered to go on a bike ride with Kylynn. Admittedly, we haven't done this before as I was just recently (in the dead of winter) given a bike, but I can ride a bike still. Kylynn's response? "Mom, I'm not sure we should. You might fall and then you'd cry, and then I'd cry!" *sigh* Bike ride is on hold until Kylynn finds me a suitable helmet. I try not to cry in front of her too often, but still, it does happen.

Me, Kylynn, Mona, Carl, and Eric

Me and my harp, Ashe

Today was one of those days. First, I had chemo this morning and came home with this stupid fanny pack of chemo to be my constant companion for the next two days. Never a good set up when you're trying not to cry. But more than that, I have been thinking about and missing my friend and harp teacher, Carl. Carl passed away at the beginning of this year at the young age of 41. I was extremely sad when I heard of his passing, and then with a little time and a bunch of craziness in my own life, the hurt became less and the memories made me smile. But the past couple of weeks I have have been avoiding thoughts of Carl because they hurt again. It's been difficult though because my beautiful harp, Ashe (yes, I named him) sits in my room and reminds me of lessons and laughter with Carl. And I cry... and Ashe cries with me. If you've ever owned a largish stringed instrument then you probably understand that statement. Ashe audibly echos my pain and somehow it makes it hurt more. I have gone on the computer to pull up pictures unrelated to Carl, but have managed to stumble across pictures like these often. And I love the pictures, but they also carry a sting. Then today the details for Carl's memorial here (he passed away in Germany where he was living with his wife and daughter) were posted and will be held on what would have been Carl's 42nd birthday, and I cried. There was no way to stop it, and Kylynn came over and asked why I was crying and said that it made her sad. Kylynn knew Carl pretty well, as did Eric, so she understood when I told her why I was sad. We talked about how it's okay to cry when things make us sad like When someone we care about dies. Kylynn nodded her understanding, but just under that understanding was raw pain in the eyes of my ten year old. It passed fairly quickly, but there is very clear understanding of the tears that her future may hold.... which only made me cry more.

Fun with Kylynn, Carl, Mona, and Melanie

We did, however, pull ourselves together and had a nice quiet evening at home. Now my munchkin is sleeping soundly, yet I'm wide awake. I'm so very tired, but sleep is not cooperating tonight. I don't know. Some days just seem rainier than others, but even on the rainiest day there is the knowledge that eventually the rain will cease and the hope that once again see all who have been lost to us in this world when we reach the next.

Carl and Melanie

Here's what's been going on:

Before Christmas I had the tumor that they found in my spine radiated and I was scheduled to go back to Mayo in early February for some scans. Well, in keeping with most of my recent visits to Mayo, everything went to crap with those scans. The PET scan showed active cancer in my liver and lungs which wasn't too surprising but was still disheartening. The PET scan also showed a new tumor in the ball joint of my right shoulder. Not cool. Looking at the CT scans showed that the growth in my liver and lungs wasn't huge but enough that my oncologist felt we need to put all of the preventative things we were doing to try and stop any recurrence of the breast cancers on the back burner and focus again on the cholangiocarcinoma. His recommendation was some radiation for the tumor in my shoulder and then a new chemo to try and shrink the tumors in my liver and lungs. Both of these treatments he felt I should be able to get closer to home and so he sent all of my information and scans to the oncologist I have been working with here. Both oncologists were in agreement, but they were not able to get the radiologist on board with them here to take care of my shoulder (it's a long story that makes me angry to tell). Since I am going back up to Mayo in March, my oncologist there okayed just starting the chemo and after we see my next set of scans we will decided about the radiation. So I started my new chemo on the 17th of February . I hate it. No, I despise it. It is a 4 hour infusion and then I go home attached to a 46 hour slow infusion of another drug that I get to carry around in a very stylish fanny pack. I have two of these treatments so far but I can confidently say that it is the worst chemo that I have ever dealt with. Never has a chemo made me so sick. Even with a 20% dose reduction and new pre meds, I have had to go in for fluids the day I get my pump unattached and the day after.  For at least three days after chemo, I am useless. I can barely move from being so exhausted. This is a tired I have never experienced before. So tired that my chest aches and my arms feel heavy. Sleep is all I want to do, but even then, I wake up still sick and still tired. Who has time for that kind of crap?

In the midst of all the cancer crud that has been going on last year through the present, we have managed to get are bathroom closer to being finished. We need some paint and cosmetic type stuff, but we have a sink! So, with this bathroom project, I recently (before Christmas) got a new shower curtain and shower curtain rod. Yea! Looks great! BUT, the stinking curtain rod (it's a tension rod) has been just randomly falling down. Sometimes when I'm getting out of the shower, sometimes when my child is in the shower, sometimes just because we sneezed two rooms away. It's annoying and, if you're in the shower when it happens, rather inconvenient. I don't know if it's the tile in our shower or the rod not being grippy (it's a word, right?) enough, I've tightened the heck out the thing... still falls down. There was even a day when both the shower curtain rod and the towel rack came crashing down at the same time. But ya know, things could be worse right?And that's how I've been feeling about my life lately. The shower curtain rod keeps falling down. We radiate something and "put the curtain rod back up" and then I get a scan that shows more cancer and "the rod comes crashing down again". New chemo, "put the rod back up", sick for three days, "shower curtain on the floor again".  It feels endless, and it's exhausting, but there's hope, right? We can always put the shower curtain rod back up and one day that it is going to stay!
Just as an aside, as I am typing this post I am reminded of a post that I wrote quite awhile ago that has a similar theme. You can find it HERE.

I would be lying if I said that all of these new changes and treatments don't scare the hell out of me. I look at Eric and Kylynn and our day to day struggles and it breaks my heart. I think about this new chemo I'm on and I can only remember that it is the same chemo that two dear friends with the same diagnosis were on when they passed away, it keeps me up at nights. I think of all the really cool things that Kylynn is learning and doing with her schooling. She has been going through this amazing period where you can almost see the connections being made in her brain and she just lights up with excitement over her discoveries. And I have to miss that for a few days when I'm sick after chemo. I HATE that. Eric and my family are always having to pick up the slack when I'm sick after chemo and I feel like such a burden. BUT through all of this, even when my shower curtain rod keeps falling down, I have been surrounded by people who love me and Eric and Kylynn. Someone has always been willing to step in and help "put the shower curtain back up". That love and support is what gets us through, even on the rainiest day.

So, as is usually the case, my life has not gone as planned. The good news is that because my lung tests failed it was determined that my lung tumors are mostly dead and over all stable. So good, right? No more worrying about the lungs for now, yea! But, being that it's me, the story of course doesn't stop there. No. Scan revealed that I had some new tumor growth in my liver. Options were discussed and after much debate another open surgery was decided upon. More scans were done in preparation for the surgery and, you're not going to believe this, but those set of scans also turned up a suspicious mass in my right breast. That won me more tests, mammograms and ultrasounds. Those tests showed a mass not just in my right breast but in my left as well. Fabulous. So then there was needle biopsies. And though my oncologist felt it would be extremely rare to have more than one active cancer going on, we must remember that we're talking about me and nothing is ever "normal". My biopsies showed that I had, not one, but two seperate breast cancers going on. A different one in each breast. So, in case you lost count, that brings my active cancer count up to three. THREE! What?! Okay, so once again, my "swamp castle" came crashing down. Our lives were thrown into chaos and I hardly knew what to do first.

My oncologist, along with a team of other doctors, came up with a plan. Good thing someone knew what they were doing. It was decided that I would have the liver surgery first as it was more pressing and then after a bit of recovery we would deal with the breast cancers. On July 17th I had that liver surgery and it was followed by the four most miserable days in the hospital complete with a blood transfusion, which was a completely new experience for me... not a fun one. Blah. I returned up to Mayo this past week to get things rechecked with the liver surgeon and then discuss what to do about the breast cancers. I went up to Mayo fully expecting to hear the words "double mastectomy", and while it was discussed, it sounds like we're going to do lumpectomies followed by some chemo and then radiation. Three different doctors there quoted research to me showing both procedures have the same outcomes for patients. They've never steered me wrong at Mayo before so I'm trusting that since this is the course of action everyone seems to be recommending, it is my best option. There is a caveat though, my oncologist wants my radiation done at Mayo. He recommends this because of some uniquely "Beccaish" physical abnormalities that I have, mostly my very deep set sternum and strangely curved rib cage. This is a point on which I happen to agree with my doctor whole heartedly and I very much like the radiologist who would be in charge of my treatment, BUT this means a minimum of a month in Rochester for treatment. Radiation doesn't take long each day, but it is a five day a week treatment for at least four weeks. This poses all sorts of new challenges. Eric, of course, has to still work, not an option for us financially for him not to. Kylynn is homeschooled, that has to get sorted out. I need to stay somewhere for a month. There are a million things to figure out. We do have some options though, and I know we will make it work somehow, but it is just so much to deal with and figure out.

The solo dress!

To say that things have been difficult lately would be a huge understatement. This has taken a toll on all my family and friends but probably has been hardest on Eric and Kylynn. They are two tough cookies and I would be lost without them. And we haven't been without blessings though, throughout all of this. We have been surrounded by family and friends offering support, love, and assistance when we need it most. Somewhere in the blur of all this bad news Eric and I had our fourteenth wedding anniversary. To be precise it was the day before my liver surgery and we spent our anniversary talking with doctors, but still, fourteen years! Eric and I have certainly tested the "for worse", "for poorer", and "in sickness" part of our vows and we have come through it together. There are better days ahead for us, I know there are. And in all this our Kylynn turned ten! TEN! She was a year and a half old when I was first diagnosed, back then I didn't know if I would see her turn ten, but here we are and I am trusting (and praying, praying, praying) that I get to see her grow up. Kylynn has had many accomplishments over the past months too. Most notably among them, she completed her first year of homeschooling  and accomplished so much in that first year. Now that I kind of feel like we know what we're doing I'm excited about our second year, and so is Kylynn. So excited, in fact, that she asked yesterday to start schooling earlier than I had planned and has a number of subjects that she is specifically asking to start. Love that kid. And Kylynn is still doing her Irish dance and karate (though we've had some hiccups in our ability to get her to classes due to my health craziness) and doing well with both. In dance, Kylynn earned her solo dress in May and in the Irish dance world that is a huge accomplishment! In karate, our girl is nearly a brown belt and watch out! that girl can kick!!

My strong, smart girl!

But, again, this has all taken a huge toll. None of us know what the future holds, but we are all acutely aware of what it could hold. We all seem calm and composed most of the time, but for Kylynn and myself at least, there is a storm raging just below the surface and though we do our best to keep it at bay, that storm breaks through from time to time. Kylynn is so very aware of what her future may look like that is breaks my heart. She speaks of it, usually in the wee small hours of the night, to me with clarity, maturity, faith, and heartache that far beyond her ten years. I can't imagine what it is to know that you may lose your mother at such a young age. That little girl is carrying a burden to rival Atlas' and doing it with more strength and grace than I ever could, all the while worrying about her friends' inability to understand her pain (no kid should have to understand that, and they can't, not truly) and feeling as though she needs to hide her pain to escape teasing from those who just don't understand. Now don't get me wrong, I do not fault any child for not understanding Kylynn's pain, in fact I am glad that they don't have to go though what she does, but my heart breaks over the idea that, because they don't understand or misinterpret her tears, my child feels the very real need to try and hide it all. God has big plans for my little girl, I know He must because he is making her so very strong.




Where does that leave us? Well, as I tell Kylynn, it leaves us with no way to go but forward through the darkness. All the doors behind us have been shut, we can't go back. Standing still in the dark is not a good option. So we hold onto one another and take turns holding the lantern to light the way. We carry each other when one of us is weak, and we trust that God has something big and beautiful waiting for us when the darkness recedes. As long as we have one another and our family and friends, we're going to make it through even these rainiest of rainy days.

How VERY far we've come!

So I had my surgery and, as expected, it was no fun at all. Chest tubes? Yeah, I guess they're great for keeping your lungs inflated and draining crap from your chest, but as far as comfort goes, they could stand a lot of improvement. In any case, the surgeon removed one (not two as discussed) tumor from my right lung and felt that it was large enough to provide a sample for all three tests that were proposed. I spent a night in the hospital and then returned home with the hope that soon I might have some answers. Then, about a week after I had my surgery, I received a phone call from Mayo telling me that the tumor that was removed had more scar tissue than they expected and that because of that there was not enough viable tumor tissue to do two of the three tests (the least expensive one, and the most expensive one). So my hopes were pinned to the one test that was left. The nurse told me that they had sent off my tumor sample to the company that does that test and felt pretty confident that there was enough in that sample for them to run the test on. But a week ago I received another phone call from Mayo saying that the sample that they sent had only 20% tumor purity and that they were unable to run that test either. The company that does that test asked for another sample to be cut from the tumor but that there was a very small chance that they would be able to successfully run it.

To say I was devastated by this news would be a vast understatement. The surgery was misery, and the mere thought of repeating it is enough to bring me to tears. And we haven't even mentioned the failed tests to Kylynn (please don't if you see her) because she is still shaken up about the surgery. Things have been tense around here and tempers short. Eric and Kylynn are feeling the stain and stress, as am I. I can't speak for them, but I would say that trying to hold everything together here at home, with Kylynn's schooling, Kylynn's activities, and process all this Mayo stuff is like when I try to carry laundry downstairs without a laundry basket. I have to hold everything close to me and hold it tightly. Something on one side will start to slip so I adjust my grip and then something on the other side falls. In the end, it's a huge effort and invariably something gets dropped and I have to go back and get it. No fun. And Kylynn has been feeling the stress around here and doing her best to deal with things, but she's nine... and that just adds another degree of difficulty to my "juggling" act. I feel like maybe I am mixing my metaphors....

Just by coincidence Kylynn and I are working on a Greek Mythology unit right now in literature. We started by discussing Chronos and the Titans. We talked about Zeus overthrowing his father and the war with the Titans and how Zeus locked away all of the Titans who fought against him, all that is except Atlas. Atlas led the Titans in battle against Zeus and for that he was punished by being made to hold the world on his shoulders. I had heard the story of Atlas many times before but never really gave it, or Atlas, much thought, but after telling Kylynn the story I could not get Atlas out of my head. I looked at artists' interpretations of what they felt Atlas looked like and I was intrigued. Here was this man (albeit fictional, but still) whose only crime was fighting for what he felt was right and because he lost he has to carry the weight of the world for eternity. Somehow, lately I feel a kinship with poor Atlas, though I dare say Atlas carries his burden with more grace and dignity than I.

So where does that leave us? I don't really know. I return to Mayo at the end of this week and will see what is proposed. But until then, Atlas and I shall blunder on together. Him skillfully balancing the world yet looking a little, is it wistful? bewildered? and me carrying my too large armful of dirty laundry, dropping things, while still trying to hold aloft my feeble, flickering lantern as we wander through some of the rainiest days.

Have you ever carried at lantern through the dark? As you carry them they push the dark back and create a circle of light around you as you move on your way.  The thing about that circle of illumination is that it small and beyond it, the darkness is absolute. Stand outside my small circle and I may feel your presence, but I cannot see you. Lanterns are handy things to have in the dark, and yet, I cannot help but sometimes feel, as I carry a lantern, that sinister things lurk just beyond its glow waiting for my light or steps to falter so that they may close in on me...

Well, I didn't get my two Mayo free months. Instead, yesterday I met with a couple of doctors from the Individualized Medicine team at Mayo and with a surgeon to discuss my next plan of action. The plan is not so much of a treatment plan as it is looking for information to guide decisions about treatment. This whole process seems complicated and has some twist and bends to it, so let me see if I can simplify it a little.

This coming Friday I will be having a surgery to attempt to remove at least one, but more ideally two, of my lung tumors. The surgeon is hoping to accomplish this using a scope and about three small incisions. However, most of my tumors are not very close to the surface of my lungs so there is a chance the surgery could turn into a more open one. Once they have some viable tumor samples the plan is to run a number of tests on them. Which or how many of the tests will actually get run is largely dependent on what our insurance is willing to pay. (One of these tests has a $15,000 price tag on it. If insurance won't pay it, it's not getting done unless I find a money tree in full bloom... and it's winter.) These tests are looking to, on differing scales and ways, analyze the tumor's DNA and look to match a treatment to it. That is way over simplified, but in the end it comes down to trying to find a treatment with a super good chance of working.

What are the odds? Not great. There's a greater chance that the tumor DNA is going to bury its secrets and tell us nothing at all. But the chance that we will find some answers is still large enough that it is worth a shot. And, as you should know by now, I am a huge believer in the Han Solo philosophy of "Never tell me the odds!"

But, aside from all the potential benefit that this Individualized Medicine approach might hold for me, there is another component, or facet, that was only hinted at and alluded to. One that seems almost more weighty and important than my individual outcome. Once again, in the world of cholangiocarcinoma, I am heading off into uncharted territory and my outcomes may help shape future treatments for others with this same disease. That's an important thing to me. It helps, a little, to know that what I am going through now may help someone else later and save them from a similar ordeal.

...So I take up my lantern and head out into the unknown again. I am happy and proud in some ways to carry this lantern. I can feel the presence and hopes of others behind me, watching and waiting to see where I lead. But carrying the lantern can be frightening and wearisome too. There are times when my light falters and the sinister presences draw closer, and I am afraid. I will, however, press onward as long as there is a lantern that needs carrying and I have strength enough to lift it.

I do not know what to expect from this surgery or from these tests. I have great hopes but I also have fears. It is sometimes difficult to carry the lantern, but as long as there is darkness that needs illuminating I will plod forward, even on the rainiest days.

Part of a beautiful illustration by Jane Dyer from one of my most favorite children's books, Child of Faerie, Child of Earth, written by Jane Yolen

In the interest of keeping people updated, and not having to make a million phone calls to do it, I will attempt to sum up my Mayo visit for anyone who's interested.

The clinical trial that I was on allows for only 20% tumor growth (based on intake measurements of 2 tumors) before you are removed from the trial. My scan from Tuesday showed that I crossed that threshold (24% growth) and so I  am no longer taking the trial medication. Allow me to point out a few things that may forestall any forthcoming freak out:

1. I went to this appointment totally expecting to stop taking the trial medication (not because of tumor growth, but because my doctor had already told me last month about some things he was pondering for next steps)
2. The tumors that have had the 24% growth are in my lungs and were small to begin with (maybe 1cm) and so when put into perspective, 24% of small is still well, small, right?
3. What my doctor is proposing and trying to line up for about 2 months from now is kind of exciting and potentially beneficial to others with cholangiocarcinoma, not just myself. I don't have all the details yet and haven't fully wrapped my mind around the ones that I do have, but it sounds as though we are going to get Mayo Clinic's Individualized Medicine team involved and possibly some others.

So the news from Mayo this trip has been disappointing and exciting and slightly terrifying (for me at least) in measures that vary from moment to moment. I have two glorious treatment free months stretching out before me and a glimmer of hope sparkling on the horizon. I suspect that that hope is one of those things that seems beautiful from a distance but up close is bigger and more frightening than you anticipate. But I will cross that bridge when I get to it and the joy of the present is enough to sustain me through the rainy days.

I can hardly believe that it has been a year since I posted and yet, at the same time, it seems like even more time than that has passed. Life has been eventful and we have been busy living it. Let me see if I can catch you up on some of the events of the past year.

First, that clinical trial that I mentioned a year ago I ended up starting last December. It is an oral medication that is aimed at inhibiting blood vessel growth around tumors. It is not the most pleasant drug to take, but all in all, it isn't the worst drug I've been on either. Like any medication, it has side effects. Some, like headache and nausea, are typical, but some side effects are just wacky. This drug doesn't make my hair fall out (though it does seem to be thinning) but it does make my skin and hair lose all its pigment. Yes, that's right, my hair grows out completely without pigment. My hair is clear, but pretty much just looks white. Check out this picture of my eyelashes. One eye with mascara, one without.

Wacky, right?
So, I've been on this trial for nearly a year and while it has slowed my lung tumor growth, my doctor is looking ahead to something that may be of more benefit to me. More on that when I know more. But for now, I am doing tolerably well. I am feeling okay for the most part and can keep up with Kylynn reasonably well (that kid has a LOT of energy).

And speaking of my little Aria, you wouldn't believe the difference a year has made in her life. I keep looking back at this post and I find it staggering that it has only been a year and a half since she made her first communion and danced at her first feis. She has changed, and grown, and matured in so many ways. She is a fourth grader now! And more amazing than that is that this past August, Kylynn and I found ourselves starting down a road we (or at least, I) never thought we'd be on. In early August, for many reasons (some that I didn't even realize at the time), Eric and I made the decision to homeschool Kylynn. Actually, we made the decision that I would homeschool Kylynn. Never did I imagine myself as a homeschooler, but after the past few months, I wouldn't trade it for the world. I don't know if this a permanent change in our lives or if it is just for a year or two, but I honestly think it is something that both Kylynn and I needed. Now, we have our moments (sometimes days) where school at home is a challenge, but the benefits that we have seen in just this short amount of time make it worth it.
Things like this:


 And this:

become gym class. And we get to learn in place like this:
And spend time learning with Kylynn's cousins in Tennessee:

And Kylynn can learn here:
at Mayo Clinic, with me when I have to go for monthly check ups. Not having to leave her behind, I think, has helped both of us.
More on homeschooling as we go. It's an adventure and a learning experience for both of us.

And then there is Kylynn's dancing! WOW! In the year and a half since her first feis this kid has come a long way. She has danced her way through the beginner 1 and beginner 2 levels and is now making her mark on the novice level. Our Jiggity Jig danced her last feis in her green school dress last month and this month debuted her highly coveted, black school dress at a feis in Tennessee. And, as is evidenced by the picture, has added hard shoe dances to her repertoire. (Video to come... I hope)

In her black school dress!

 Couldn't be prouder of my Aria!

She has changed so much this past year and I sometimes wonder where my baby went just who this beautiful big kid is. But then Kylynn will stare in wide eyed wonder at a galloping horse, or sing as she moves about the house, or burst into spontaneous dancing just for the joy of doing so, and suddenly she is my little baby, who was so anxious to start living that she entered this world a month early, again. She's a good kid. It is so much fun watching her grow.

So there you have it, or at least a tiny sampling of it, my life these past twelve months. It has been busy. It has been stressful. It has been fun. And, even on the rainiest day, it is always an adventure!

Trudge - verb \ˈtrəj\
: to walk or march steadily and usually laboriously

or as I have heard it defined most accurately:

To trudge: the slow, weary, depressing yet determined walk of a man who has nothing left in life except the impulse to simply soldier on.

We've been doing a lot of trudging lately, here, in the Thies house, or at least if feels that way.  I had a decent check up at Mayo a few months ago. My liver is still looking good and though my lung tumors are still growing, they are doing so at a slow pace. There was some discussion with my oncologist about possible treatments for my lung tumors and a clinical trial was proposed, but I left undecided... and I am still undecided. I return to Mayo in a couple of weeks for my normal scans and check-up and I expect the trial will be discussed again.
Back at home, I decided to return to work on "a limited basis", and since it is near impossible to have your own classroom on "a limited basis", I am substitute teaching 2 - 3 days a week. I decided to return to work mostly in efforts to help make ends meet financially around here, but also partly because I miss being in the classroom. Let me tell you, working again has been a huge adjustment, not just for me, but for Kylynn as well. Subbing is tough, not that I thought it would be a breeze, but some days... Wow! And I can't even begin to tell you how exhausted I am. Most evenings, by 8:00 (8:00 folks! What the heck!), I am ready to go to bed, and often do. This is a tiredness that I have never felt before. I don't like it. But I trudge on.
 
And worse than my trudging, and likely adding to my trudging, is that fact that Kylynn seems to be trudging too. Since school has started, Kylynn has been having a rough time. I can't recall a time when I have ever seen Kylynn this out of sorts.  She has a lot going on, my wee one. Respecting her privacy I will just say this, I can only imagine what it must be like to be 8 years old and to know your mom has cancer and to understand all that that could mean (and make no mistake, Kylynn understands). And on top of that worry she has normal 8 year old stuff going on, school issues, friend issues, normal kid stuff. My baby is trudging, it breaks my heart. 

Now, this may seem off topic, but bear with me:

The philosopher Friedrich, Nietzsche once said: “If you gaze long into an abyss, the abyss will gaze back into you.” Now to be fair, that is really only half the quote, and taken as a whole means something a little different than what I'm getting at but, taking just that part I get this from it: Dwell for too long on any one thing and it can consume you or define you. There are many different "abysses" that we could gaze into in our lives but around here the biggest abyss is cancer. And it is a dangerous abyss to say the least, full of whys, hows, and what ifs. Gazing into that abyss never produces any answers, only more questions and uncertainties, and it is an abyss that gazes almost instantly back into you. Now, I am an adult, I know that it doesn't do to dwell on cancer (though every caner fighter is entitled to from time to time, in my opinion) and so I keep busy, and Kylynn keeps me busy, and more often than not I am able to skirt the edge of the abyss without too much gazing into it. Kylynn, however, is just a child, a fact which neither protects her from the abyss of cancer nor equips her with any weapons to fight its gaze. So we, the adults in her life, do our best to give her distractions while trying to teach her ways to fight the abyss on her own. But she is a small warrior. Brave. Strong. But small, and still learning. She revels in her dancing and karate, both of which provide her with an armor or sorts against the abyss of cancer, and she enjoys being with her friends and family which also give her some safety, for those things I am grateful beyond words. But  her abyss defenses are not fully formed yet.

And so we trudge on, one foot in front of the other, me trying to guide my girl's steps away from the abyss even as my own falter. But even on the rainiest day, when the abyss yawns greater and more immense than ever and our heavy hearts cause use to trudge, there are friends, true friends, who lighten our burdens, and family whose ever present love gently pushes us away from the abyss. We are blessed, even in our struggles.

Kylynn Aria

   Over the past month I have managed to cross off a number of items on my "bucket list". The biggest of those has to be seeing my Kylynn Aria make her First Communion. When I was first diagnosed and sat looking at my sweet girl, who then was only a year and a half old, it broke my heart to think about all the events in her life that I may never get to see. Her First Communion, her Confirmation, her high school and college graduations, her wedding, the birth of any babies she may have. It's a long list and I still worry about seeing many of these things, but I feel so blessed that I was there to see my baby make her First Communion. When I traveled to Medjugorje all those years ago in 2007 the only thing my Aria asked me to bring her was a pink rosary. I picked out the cutest pink rosary that I could find and brought it home to her. But my mom and I also searched all over that small village buying all the different pink rosaries that we could find because I wanted to have them to give to Kylynn on all the big occasions that she had ahead of her. When I brought those rosaries home it was hard to imagine that I would ever get to hand my Ari one. She was so small then and her First Communion seemed a lifetime away. I cannot begin to tell you what a joy it was to put that first rosary in her hands and telling her the story of how I looked all of Medjugorje for these special rosaries for her. Kylynn may not have understood the huge significance of the moment, and that's okay, she will remember it when she is older and understand. But for now, I knew what a big deal it was and that's enough. Another special thing about Kylynn's First Communion is that we had my wedding dress made over into a communion gown for her. It turned out beautifully and looked like a smaller version of my dress. Kylynn also wore my veil.

Kylynn and Me

   These last two items that recently got crossed off of my list are, in the grand scheme of things, smaller, but still very important to me. By now you must know of my love for the singing group Celtic Thunder and the delight that they bring me. I have previously had the opportunity to meet most of the guys in the group but the two that I have wanted to meet the most, Ryan and Neil, have managed to elude me... until recently. As luck would have it, these to talented and not bad looking men teamed up to play at some smaller venues with their Acoustic By Candlelight tour. Last weekend that tour brought them through the Chicago area and I was able to see them two nights in a row!  After the show the guys took time to meet with everyone, take pictures, and sign pictures and, in my case, a shirt for my Aria. So that was one item checked off my list.

Neil, Me, & Ryan!

Neil & Ryan holding a message for Kylynn

Wow! It really has been a long time since I last posted. So much has been going on, and I am happy to report that is mostly good stuff!

First, I returned to Mayo in January for a check-up. It was four months since my last check so I was quite nervous. However, everything still looks stable! My liver is still full of big holes from tumors being removed but there is no sign of new tumor growth. YEA!!!! My lungs still have all of the tumors that were the before, but they are growing at a such a slow rate that my doctor feels that there is no need to restart chemo right now. And here is the most surprising news, my doctor said I can go six, count them, SIX, months before I have to return for another check-up. That means the rest of Kylynn's school year will not have to be disrupted by my being away at the doctor. In fact, this school year has been Kylynn's first since she started school that I have only had to make two trips up to Mayo Clinic. That makes me smile.

In other news, Kylynn has been keeping me quite busy with her Irish dancing. We just finished up the St. Patrick's Day marathon of performances where my Aria was in ten shows over the course of a week. It was a lot of fun and I am so proud of my girl, but I am also exhausted. Now it is on to the Spring Performance and Kylynn's first feis (Irish dance competition) in May!

So there you have it. A happy little girl and six months before I have to return to Mayo. Many people have been asking me what I am doing about my cancer and the best answer I can think of to sum up what I am doing right now is a quote from my man, Han Solo in Return of the Jedi:

Luke: Vader's on that ship.
Han Solo: Now don't get jittery, Luke. There are a lot of command ships. Keep your distance, though, Chewie, but don't look like you're trying to keeping your distance.
Chewbacca: [barks something]
Han Solo: I don't know. Fly casual.

That's me, I'm flying casual, keeping my distance from cancer and Mayo without looking like I'm trying to keep my distance. :)

So it would seem that even the worst storm has to recede sometime and though it almost certainly will return, you learn to enjoy the sun when it shines and master the art of flying casual!

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.

Yes, "holey" as in "having holes" and "guacamole" as in "mostly avocados". Allow me to explain...

I went back up to Mayo at the beginning of June for a check-up. I had surgery in May to burn a couple more tumors out of my liver and when they did the pre-op scans my oncologist had said that it looked like my lung tumors may be growing again. So my return in June was to check things out after the surgery and to take a look at my lungs and decide what course of action to take. In the weeks after surgery and before my check-up my liver had been hurting pretty badly. Well, that is to say, the area in which my liver is located had been hurting, I only assumed it was my actual liver hurting. So when looking at my scans after hearing about my pain my oncologist told me that my pain was caused by the holes created in my liver when the tumors were burnt out. I had holes in my liver from previous occasions when tumors had been burnt out and apparently one of the old holes connected with one of the new holes and created a giant hole. And that giant hole was (is) filled with fluid, dead tumor, and other nasty sounding things that I have been informed my body will absorb and get rid of on its own. In the meantime, however, I have a giant hole and the crud in it is pushing on my liver capsule and causing pain. How big is my giant liver hole, you ask? According to my oncologist, it's the size of an avocado. And so therefore, "holey guacamole"! So to give you some visual reference as to how big an avocado is in relation to your liver I took some pictures... okay, I took them because they're funny too. The plush liver is made life size so it should give you an idea.




So, for a normal person, your liver is on your right side.









I, however, am not normal and due to surgeries and such, my liver is on the left.







This, folks, is an avocado.








And here is a liver to avocado size comparison for you. Can you say ouch!?





Where did I get a plush liver? I know a guy. *wink wink*
Look! I have plush lungs too!

In other, non-avocado related news, my oncologist and I discussed my lungs. Looking at the scans, my doctor said that you really have to squint at them to see that my lung tumors have grown, but that they are growing. But given that my liver is still recovering from surgery and that my lung tumors are growing very slowly right now my oncologist said he felt comfortable with, and, in fact, encouraged me to hold off on treatment until after the summer. We will look at my lungs again in September and see where to go from there.

Interestingly enough, the news that I got at Mayo that upset me the most wasn't directly to do with my cancer. About a year and a half ago I had a medi-port put in so that I could receive chemo without having to go through the trauma of getting an IV every time. My port is a PowerPort and can be used also for scan contrast. Well, this trip to Mayo I was informed that I would not be able to use my port for my scan contrast and would need an IV. Trauma! IVs and me do not work well together, thus the port, but the tech who was getting me preped for my scan looked at an older scan (something I guess they are supposed to do) and saw that the tip of my port, the part that is supposed to sit in a big vein just outside the heart, was in the wrong place. After talking to my doctor and having him look at my scans, it turns out that the tip of my port is, indeed, in a bad place. Instead of sitting just outside my heart, the tip of my port had worked its way inside of the atrium of my heart. My doctor said that this was most likely due to my being on the thin side and port tubing being made a standard length. Because I do not have enough fat to hold my port farther away the tip of mine, through repeated use, got pushed into my heart. Not good for scan contrast because they run it at such a speed that the tip of the port could flop around and hit the walls of my heart causing fibrillation or the speed at which the contrast is run could just simply blow a hole in the wall of my heart. Neither of these things sound like fun, so no scans using the port and we are going to have the port situation remedied in September. I will either have it taken out completely or, if I will be starting a treatment, they could put a new one in for me that could be fitted to my size better. Fun stuff.

So there you have it, a goofy little update. Sorry I have been absent from this blog lately, I blame the avocado hole, it still hurts. But even on the rainiest days, when life hands you avocados, there are still silly pictures to be taken and friends and family to help you while you heal and make you smile.

When Harmony found me in the giant world of cyberspace I was astounded for not only did we share a cholangiocarcinoma diagnosis but we were only a couple years apart in age (Harmony being about a year and a half younger than me) and we both had a young child. I can't even begin to tell you the astronomical odds that we overcame when Harmony found me, this is a rare cancer and it is even rarer among young women, it truly was a miracle. Harmony and I struck up a friendship fast, both of us eager to have someone who really understands what we are going through we would sometimes trade e-mails multiple times in one day. And though we never actually met each other, Harmony and I became sisters in our fight against this rare and horrible cancer.


Just recently, my dear friend Harmony passed away after courageously battling for 19 months. I am heartbroken. I have no words when people ask me about it, I haven't even allowed myself to think too long about it because I just cry. I know that I never physically met Harmony but we were friends none the less. We shared a bond that is unlike any other I have ever known. When I would talk to Harmony about how I felt or about a treatment I had, she was the only person, that I knew, who could truly say she understood. I could say that my liver hurt (and really, who says that?) and Harmony would know exactly the ache I was talking about. When I needed a cheerleader, Harmony was there. I miss her. I have such wonderful family and friends, and for that I am grateful, but there was no one in my life like Harmony.

Harmony was married to her best friend, Lee, and they have a beautiful little boy named Blane who is 5 years old. Thinking about Blane without his beautiful mommy is overwhelmingly sad for me. It literally makes my heart ache. I know how very much Harmony loved her little boy and that kind of love lives on beyond death. I pray that Blane will always feel Harmony's love for him and that that love and the love of the rest of his family carries him through his rainiest days. I pray too for Harmony's husband, parents, and whole family, the loss of Harmony is overwhelming for me, how much more so must it be for them.

Over the past few years I have lost more than a few, too many, friends to cancer but the loss of Harmony hurts in a way that I find difficult to explain. Harmony had the same cancer that I do and thinking about that just makes me cry. But my tears are not ones born from thinking "that could have been me", no, they are more tears of frustration and not understanding. They are tears of having gone from having a "sister" in this battle who really understands, to feeling more alone than I ever have. There is a Harmony shaped hole in my heart that will never be able to be filled by anyone else. I don't understand and I miss my sister more than words can tell.

Harmony has given me gifts though that not even death can take away from me. No matter what she was going through or how bad she felt, Harmony always had words of encouragement for me. She was ever optimistic, hopeful, and found joy in everything and I found that to be contagious. And the love that Harmony had for her family, for her friends, and for me will stay with me always.

I know that I will feel the loss of my dear friend always, but my memories of Harmony are mine forever and her hope and love are a raft keeping me afloat on the rainiest days when the flood of loss threatens to overwhelm me.

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.