Thursday, December 11, 2014

"In the bleak midwinter, frosty wind made moan, 
earth stood hard as iron, water like a stone; 
snow had fallen, snow on snow, snow on snow, 
in the bleak midwinter, long ago."

By: lolaperl::maria
Cancer is really screwing up my Christmas. I keep saying it over and over again. But really, when I think about it more, it's not really that cancer is screwing up my Christmas so much as cancer is really changing my Christmas this year.

Winter came early this year in the mid-west bring very cold temperatures before anyone was ready for them. Darkness comes early and stays long now and so many of the days have just been hung with an overcast gloom. We walked into this early winter already carrying the burden of knowing that I now was facing three cancers instead of just the single one I'd been fighting for years. The surgeries for my liver and breasts were behind us and we had just stepped off the cliff into the yawning chasm of chemo treatments with the prospect of a month of radiation at the end of it. Winter had indeed come early, and I was walking into it bald... literally.

But Christmas is coming and I was excited. Kylynn and I had gotten out the Christmas decorations before Thanksgiving this year, something we really never do, because Thanksgiving weekend we were heading up to Minneapolis for Mid-West Regional Irish Dance Championship. Kylynn qualified to compete in her Tradition Set dance and we were all very proud and excited. Knowing that we had one less weekend in which to get the house decorated, and knowing that when we got home I had to do my "big" dose of chemo and then head back up to Mayo for some scans, Kylynn and I decorated. ***By the way, Kylynn placed 19th out of 72 girls at her competition. I'm a proud mom!***
Kylynn receiving her medal

"Our God, heaven cannot hold him, nor earth sustain; 
heaven and earth shall flee away when he comes to reign. 
In the bleak midwinter a stable place sufficed 
the Lord God Almighty, Jesus Christ." 

So, the excitement of Kylynn's dance over and my house pretty much decorated, I headed back up to Mayo for scans to just check on my liver and lungs midway through my breast cancer chemo. Easy peasy, right? In, scan, "things are good", go home. Right? No. No, of course not.

My scans showed that my liver is doing pretty well, no new tumors and is recoving from surgery. My lungs each had a tiny new spot in them. These spots don't look like the known tumors and are too tiny to biopsy, so we are just going to watch them for now. BUT, my scans also showed a new tumor. Something that was not on my scans from a few months ago at all. A new tumor in one of my vertebrae. So this has thrown all our treatment plans, and my Christmas spirit, into chaos. 
Right now, the plan is to go back to Mayo next week and treat the spinal tumor with a high dose treatment of radiation. Then after that, the plans get murky... and so do my spirits. There is debate going on between my doctors about how to proceed after we treat the spine. Do we resume the previous plan? Do we shorten or modify the chemo? Do we do the breast radiation or not? Everything is in question because we, once again, don't know what move this stupid cancer is going to make next. (which stupid cancer? I don't even know anymore. But all three of them are stupid.) And ultimately, everyone is waiting for me to make the decision.
This isn't what Christmas is supposed to be like. That's what keeps playing over and over in my head. This just isn't Christmas. Teach Kylynn school. Try to help Kylynn understand these new changes. Keep up (sort of) with house stuff. Get presents bought and wrapped (you wouldn't think my new predicament would change the present buying part but it sort of does. weird). Figure out the logistics of this next Mayo trip. Keep up with my Etsy shop. Try to make this new news "okay" for everyone else. Try to make sense of the new news myself. And on and on the list goes. It often always feels like too much. I've been waking up at 3:30 in the morning, for no other reason it seems, than to just cry. Same thing happens when I have a rare moment of quiet (usually in the shower), I just cry. This isn't what Christmas is supposed to be like. Is it?

"Angels and archangels may have gathered there, 
 cherubim and seraphim thronged the air; 
 but his mother only, in her maiden bliss, 
 worshiped the beloved with a kiss."

But then, maybe it is. Maybe it is just different this year. Maybe I'm looking at this all wrong. It is still Christmas after all.  I keep thinking about how things played out that first Christmas so many years ago. Probably not the way Mary thought they would. Probably not at all. But she accepted it all with her quiet "be it done unto me" heart and faith. She accepted her poverty, she welcomed guests and made things "okay" for them, she adored her baby and the changes that brought to her life (even the knowledge of the heartache she would later endure), and she went forward into her new unknown with an accepting, grateful heart  and a willingness to serve. So maybe that is my Christmas this year, maybe that is the change. For all that I say that cancer is screwing up my Christmas, I do still feel like it is Christmas. It's like things have just shifted a little, a new light has been shown over things and everything has a slightly different focus. My comfortable, predictable Christmas has been disrupted.  And maybe that is as it is supposed to be, Maybe that is my Christmas this year. Mary I am not, but maybe, just maybe, this Christmas I can learn a tiny bit of her "be it done onto me" heart.

"What can I give him, poor as I am? 
 If I were a shepherd, I would bring a lamb; 
 if I were a Wise Man, I would do my part; 
 yet what I can I give him:  give my heart." 
These little quotes I've been putting in here are the lyrics to one of my favorite Christmas songs, "In the Bleak Midwinter". This year I am loving the song even more as I find myself in what feels like a very bleak midwinter. But even though the frosty winds are moaning, even on the rainiest day, there is a hope and a light to be found at Christmas. At a time when I feel more in need of a miracle than ever, Christmas reaches out though 2014 years and reminds me of the greatest miracle ever... and it's not just for me. This miracle belongs to us all and makes all other miracles possible.

I wish you a Merry Christmas, friends and strangers alike. A very Merry Christmas.

Monday, August 4, 2014

Wait.... What?

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!

Monday, February 10, 2014

Sympathy for Atlas

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.

Monday, January 13, 2014

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