tag:blogger.com,1999:blog-51960262673497583562024-02-06T20:42:36.272-06:00Even On The Rainiest Day...A blog about cancer and the things that get me through it.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.comBlogger46125tag:blogger.com,1999:blog-5196026267349758356.post-57853190292876108642015-04-08T00:15:00.001-05:002015-04-08T00:15:39.879-05:00Sometimes you just have to cry... <br />
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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg9xbEYuzKnibn-QK2nsJzE1Ga1Z437mA-CmFPDEIPUGPNKDPXtZkuRFAbExxkAC5U8qlOajUXwm5MQjrHrs16NsULVZF6rYN-G2M9szOiywFbCW8LQNhnWoTJ54BV5d4wvKivwNNAZaU/s1600/10968506_10152575148717213_4296589033746072601_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjg9xbEYuzKnibn-QK2nsJzE1Ga1Z437mA-CmFPDEIPUGPNKDPXtZkuRFAbExxkAC5U8qlOajUXwm5MQjrHrs16NsULVZF6rYN-G2M9szOiywFbCW8LQNhnWoTJ54BV5d4wvKivwNNAZaU/s1600/10968506_10152575148717213_4296589033746072601_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me, Kylynn, Mona, Carl, and Eric</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsrjaycIxURU88nOp2L2wWq6eTxXslIi6RniHc9L5HOGxprOLFUjccLVbXyXYjjoNP1R85myudHqmosLQsF7-nEI5ykzzEgPAnillGWvFjOTd_p6SrAkOsNocPoz4l2QxqX3p-T1dERms/s1600/37638_408188712212_840381_n.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsrjaycIxURU88nOp2L2wWq6eTxXslIi6RniHc9L5HOGxprOLFUjccLVbXyXYjjoNP1R85myudHqmosLQsF7-nEI5ykzzEgPAnillGWvFjOTd_p6SrAkOsNocPoz4l2QxqX3p-T1dERms/s1600/37638_408188712212_840381_n.jpg" height="192" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and my harp, Ashe</td></tr>
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzZpvEVp4IX6oyAKt9A9xGRxCZW234ncROuT7a5LPvkYie08zU8UuYjd44NKI0I3j7eZQBARXPTunNyG6BFTIXuK3VNdqAX2VBSuTkLnMmbnWr_rl_uXcdpFB7PCEiy_X53V30mSVCgpA/s1600/10960064_10152575228512213_5256311024033851055_o.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzZpvEVp4IX6oyAKt9A9xGRxCZW234ncROuT7a5LPvkYie08zU8UuYjd44NKI0I3j7eZQBARXPTunNyG6BFTIXuK3VNdqAX2VBSuTkLnMmbnWr_rl_uXcdpFB7PCEiy_X53V30mSVCgpA/s1600/10960064_10152575228512213_5256311024033851055_o.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Fun with Kylynn, Carl, Mona, and Melanie</td></tr>
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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.<br />
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<tr><td class="tr-caption" style="text-align: center;">Carl and Melanie</td></tr>
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Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-63635816971526844722015-03-15T11:27:00.000-05:002015-03-15T11:27:23.098-05:00When the shower curtain rod falls downHere's what's been going on: <br />
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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? <br />
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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!<br />
<i>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 <a href="http://evenontherainiestday.blogspot.com/2009/06/worthy-of-re-posting.html" target="_blank">HERE</a>.</i> <br />
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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.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-42621603740512922122014-12-11T10:19:00.003-06:002014-12-11T21:00:39.200-06:00In the Bleak Midwinter<div style="text-align: center;">
<pre><i><span style="font-family: Georgia,"Times New Roman",serif;">"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."</span></i></pre>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;">By: lolaperl::maria</span></td></tr>
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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. </div>
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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.<br />
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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!***<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSiESm7Dy5d5Bk0uxnJYCrTtmzGCF6nwcBxg2IVpYLiLO8cGwIxhvYM44bPG2cel1qfyaJq6Dw5CmRFrUKR0Hmu6D-nCQldM7QFHXk0YfUV7vNNbJ3WU-mW9yoZUW4XeD5X2DNJM54mao/s1600/10700681_10152558296917684_720069180575623873_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjSiESm7Dy5d5Bk0uxnJYCrTtmzGCF6nwcBxg2IVpYLiLO8cGwIxhvYM44bPG2cel1qfyaJq6Dw5CmRFrUKR0Hmu6D-nCQldM7QFHXk0YfUV7vNNbJ3WU-mW9yoZUW4XeD5X2DNJM54mao/s1600/10700681_10152558296917684_720069180575623873_o.jpg" height="267" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia,"Times New Roman",serif;"><i>Kylynn receiving her medal</i></span></td></tr>
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<pre><i><span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-family: Georgia,"Times New Roman",serif;">"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." </span></i></span></i></pre>
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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.</div>
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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. </div>
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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 <i>me</i> to make the decision. </div>
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<pre><i><span style="font-family: Georgia,"Times New Roman",serif;"><i><span style="font-family: Georgia,"Times New Roman",serif;"> </span></i> </span></i></pre>
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<a href="https://www.etsy.com/shop/FeisysFriends" target="_blank"> Etsy</a> 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 <strike>often</strike> 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?</div>
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<pre><i><span style="font-family: Georgia,"Times New Roman",serif;">"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."</span></i></pre>
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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 <i>is</i> my Christmas this year. <b>Mary I am not</b>, but maybe, just maybe, this Christmas I can learn a tiny bit of her "be it done onto me" heart.</div>
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<pre><i><span style="font-family: Georgia,"Times New Roman",serif;">"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."</span></i> </pre>
<pre> </pre>
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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.</div>
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I wish you a Merry Christmas, friends and strangers alike. A very Merry Christmas.</div>
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Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-92064945680542523412014-08-04T22:43:00.000-05:002014-08-04T22:43:03.160-05:00Wait.... 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 "<a href="http://evenontherainiestday.blogspot.com/2009/06/worthy-of-re-posting.html" target="_blank">swamp castle</a>" came crashing down. Our lives were thrown into chaos and I hardly knew what to do first.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQsWz5L2zjOr-2Rspz-rj-mNe9VGKmDEhiE-MFDdFkOswjO3JuG9z8ebUyJUp5H5ikcSP8BtFwPAS3XNUeSeqzXTnOaPF6474LYtPhGw85ZIvum6oOldMVEFH0xbslvmemDAm3RVJBL70/s1600/IMG_0303.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgQsWz5L2zjOr-2Rspz-rj-mNe9VGKmDEhiE-MFDdFkOswjO3JuG9z8ebUyJUp5H5ikcSP8BtFwPAS3XNUeSeqzXTnOaPF6474LYtPhGw85ZIvum6oOldMVEFH0xbslvmemDAm3RVJBL70/s1600/IMG_0303.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The solo dress!</td></tr>
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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!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf8THxcJnjMSp9c9PWLT7RDgcdZ6-gXfgLz5ErHQhoJla2p1ikzF7bjth_DU15t6FjbiVNgkRRBDsc-gguOzurw_wTFwDdw5E7-KH-L_f6Q9FMCO0tu_3lFxFvrg8HctRk_5O4n-KUVOc/s1600/IMG_0296.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjf8THxcJnjMSp9c9PWLT7RDgcdZ6-gXfgLz5ErHQhoJla2p1ikzF7bjth_DU15t6FjbiVNgkRRBDsc-gguOzurw_wTFwDdw5E7-KH-L_f6Q9FMCO0tu_3lFxFvrg8HctRk_5O4n-KUVOc/s1600/IMG_0296.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My strong, smart girl!</td></tr>
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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 <a href="http://evenontherainiestday.blogspot.com/2014/02/sympathy-for-atlas.html" target="_blank">Atlas'</a> 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.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7Lrqp8VsAp97wqP5qqHwcU8NEN93uzmvUR04-BsFyL92zEaaFJsGrRfdPbMfz6yUCAIW9ifG3QRc_y0SnbpJRVYywjgapl2aaeTQnsxmtguSAJT00H4Dp36_HfO7dQw7ydk1WTWVNrs/s1600/IMG_0063.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjz7Lrqp8VsAp97wqP5qqHwcU8NEN93uzmvUR04-BsFyL92zEaaFJsGrRfdPbMfz6yUCAIW9ifG3QRc_y0SnbpJRVYywjgapl2aaeTQnsxmtguSAJT00H4Dp36_HfO7dQw7ydk1WTWVNrs/s1600/IMG_0063.JPG" height="240" width="320" /></a>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 <a href="http://evenontherainiestday.blogspot.com/2014/01/carrying-lantern.html" target="_blank">lantern</a> 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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht37SN9d2_sFT2gr2sC1vOnRcEu8NEbX6AZFq9VWHDEK26MSmdwkh40O-K3a1Y1YMxv40Tei5Hgr4Acq-bj8wU-BclY2W5OkHKVjrkXnh7tzcdS0Z5C7CedVxDhJT3PMjknKzOrj_MsQo/s1600/IMG_0064.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEht37SN9d2_sFT2gr2sC1vOnRcEu8NEbX6AZFq9VWHDEK26MSmdwkh40O-K3a1Y1YMxv40Tei5Hgr4Acq-bj8wU-BclY2W5OkHKVjrkXnh7tzcdS0Z5C7CedVxDhJT3PMjknKzOrj_MsQo/s1600/IMG_0064.JPG" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How VERY far we've come!</td></tr>
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<br />Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com2tag:blogger.com,1999:blog-5196026267349758356.post-79153002872037644952014-02-10T20:15:00.002-06:002014-02-10T22:11:23.968-06:00Sympathy for Atlas<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGF_gxrtgaiCuvlC9WPUQfg1PdAbNQLdNZxfBiuErEwRplXw8ZjQSpLUv_i90CCJSqMecHkG1ei6_oRWtSUCBZhrwOWTmRtvYmaPBObowARol-pDGvbRqIsPSPTHuq5zQA6xUFnyR6awc/s1600/atlas2.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjGF_gxrtgaiCuvlC9WPUQfg1PdAbNQLdNZxfBiuErEwRplXw8ZjQSpLUv_i90CCJSqMecHkG1ei6_oRWtSUCBZhrwOWTmRtvYmaPBObowARol-pDGvbRqIsPSPTHuq5zQA6xUFnyR6awc/s1600/atlas2.jpg" height="320" width="172" /></a></div>
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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.<br />
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1QXDnQ06DRGB4orqtqk9l6wbs924wr3K4gOa7pyOueEHrNrpnJlzGh81pXjcakSP-r52TfusWdIrR_Wb-PH3qLsi-auvPEteqMdu3zwc8Shdox55B4C6KDSx5rts2Y_2Bu0SCtky4Kng/s1600/atlas1.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1QXDnQ06DRGB4orqtqk9l6wbs924wr3K4gOa7pyOueEHrNrpnJlzGh81pXjcakSP-r52TfusWdIrR_Wb-PH3qLsi-auvPEteqMdu3zwc8Shdox55B4C6KDSx5rts2Y_2Bu0SCtky4Kng/s1600/atlas1.jpg" height="320" width="250" /></a><br />
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....<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4yrnZNKwA5eIgJbsgeP_nutG9dMhxFsLFMQW05m_jAnBxGKOykl5z3IUNbTx4zBixnzXnCjzGogGyo938skL02P9jaJJRJEwtdDlfwySewmQWQ281ZYaX1jU7gWlMzLqBaImCQrt7as/s1600/atlas4.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhH4yrnZNKwA5eIgJbsgeP_nutG9dMhxFsLFMQW05m_jAnBxGKOykl5z3IUNbTx4zBixnzXnCjzGogGyo938skL02P9jaJJRJEwtdDlfwySewmQWQ281ZYaX1jU7gWlMzLqBaImCQrt7as/s1600/atlas4.jpg" height="262" width="320" /></a>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.<br />
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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.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com3tag:blogger.com,1999:blog-5196026267349758356.post-73006743359003479022014-01-13T21:25:00.000-06:002014-01-13T21:25:19.580-06:00Carrying the LanternHave 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...<br />
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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.<br />
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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 <i>way</i> over simplified, but in the end it comes down to trying to find a treatment with a super good chance of working.<br />
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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!"<br />
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But, aside from all the potential benefit that this Individualized Medicine approach <i>might</i> 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.<br />
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...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.<br />
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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.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6vX69fC1JgTeMqUwOeNxsVsM2QUmW8rIubO5uJGgYjl0VoHa3W0yUtykw6S0jSnwrD9Slx_F8PBPbP00GVGazdO5pWEG8S3SMB8Wrs7F8vSGU3VHxLg_DE8Fni0Jky7Rgp2piG7XjLs/s1600/20140111_205423.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="355" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6vX69fC1JgTeMqUwOeNxsVsM2QUmW8rIubO5uJGgYjl0VoHa3W0yUtykw6S0jSnwrD9Slx_F8PBPbP00GVGazdO5pWEG8S3SMB8Wrs7F8vSGU3VHxLg_DE8Fni0Jky7Rgp2piG7XjLs/s400/20140111_205423.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Part of a beautiful illustration by Jane Dyer from one of my most favorite children's books, <u>Child of Faerie, Child of Earth, </u>written by Jane Yolen</td><td class="tr-caption" style="text-align: center;"> </td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-18681652748694870322013-12-12T09:17:00.000-06:002013-12-12T09:17:11.196-06:00Through the Winter, Toward the Lights!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. <br />
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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:<br />
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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)<br />
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?<br />
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. <br />
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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.<br />
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<br />Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-61226763938189613102013-11-14T22:25:00.000-06:002013-11-14T22:25:47.333-06:00Has it really been a year?!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.<br />
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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.<br />
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Wacky, right?<br />
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).<br />
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And speaking of my little Aria, you wouldn't believe the difference a year has made in her life. I keep looking back at <a href="http://evenontherainiestday.blogspot.com/2012/05/i-need-longer-list.html" target="_blank">this</a> 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><b>I</b></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.<br />
Things like this:<br />
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And this:<br />
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become gym class. And we get to learn in place like this:<br />
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And spend time learning with Kylynn's cousins in Tennessee:<br />
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And Kylynn can learn here:<br />
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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.<br />
More on homeschooling as we go. It's an adventure and a learning experience for both of us.<br />
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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)<br />
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<tr><td class="tr-caption" style="text-align: center;">In her black school dress!</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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Couldn't be prouder of my Aria!<br />
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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.<br />
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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!<br />
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<br />Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-19631742961247653982012-11-14T12:54:00.000-06:002012-11-14T21:20:02.727-06:00Warning: Trudging Near The Abyss Could Be Harmful And Is Highly Discouraged!<div class="separator" style="clear: both; text-align: center;">
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<b>Trudge</b> - <span class="main-fl"><i>verb</i></span> <span class="pr">\<span class="unicode">ˈ</span>trəj\ </span><br />
<span class="ssens"><b>:</b> to walk or march steadily and usually laboriously</span><br />
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<span class="ssens">or as I have heard it defined most accurately:</span><br />
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<span class="ssens"></span><span class="ssens"><b>To trudge: </b>the slow, weary, depressing yet determined walk of a man who
has nothing left in life except the impulse to simply soldier on.</span><br />
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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.
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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 (<b><i>8:00 folks! What the heck!</i></b>), 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.<br />
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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<i> understands</i>). 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. <br />
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Now, this may seem off topic, but bear with me:<br />
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The philosopher Friedrich, Nietzsche once said: <span class="sqq">“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 <i>from time to time</i>, 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.</span>
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPCVoi0aUPo3RYv2R0IcoS8IVBrJZWE3GK1BukRsn9qZQdbtTyyLl3FMyzhzzt_NHwuvjw-LNEILd9Om-0MzUUMpBPaYXBX_2Oi1wfAg4_rDTbg4FmEIOZKI9hvrtc8bzWQCnkKDvxGA4/s1600/ClickHandler.ashx.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" height="175" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgPCVoi0aUPo3RYv2R0IcoS8IVBrJZWE3GK1BukRsn9qZQdbtTyyLl3FMyzhzzt_NHwuvjw-LNEILd9Om-0MzUUMpBPaYXBX_2Oi1wfAg4_rDTbg4FmEIOZKI9hvrtc8bzWQCnkKDvxGA4/s1600/ClickHandler.ashx.jpg" width="200" /></a><span class="sqq"></span><br />
<span class="sqq"><br /></span>
<span class="sqq">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, <i>true</i> friends, who lighten our burdens, and family whose ever present love </span><span class="sqq">gently pushes us away from the abyss. We are blessed, even in our struggles.</span>
<span class="ssens"> </span>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-77308984057001258932012-05-20T21:21:00.001-05:002012-05-20T21:21:07.057-05:00I need a longer list!<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right;"><tbody>
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia,'Times New Roman',serif; font-size: xx-small;"><b><i>Kylynn Aria</i></b></span></td></tr>
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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 <a href="http://www.medjugorje.org/?gclid=CM7H1-iAkLACFYcBQAodZRjVrA">Medjugorje</a> 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.<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: Georgia,'Times New Roman',serif; font-size: xx-small;"><i><b>Kylynn and Me</b></i></span></td></tr>
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The second item that I recently crossed
off my bucket list was seeing my little Aria in her first feis. (A
feis is an Irish dance competition.) Kylynn <i>loves </i>Irish
dancing and, in my humble and perhaps a little biased opinion, she is
really quite good. I thought that perhaps competing might make Ari a
little nervous but it didn't seem to faze her at all. In fact, my
little dancer has told me a few times how much she likes to be on
stage. I am so proud of Kylynn and her dancing and I love the
confidence that it has given her and all the wonderful dance friends
that she has made. Kylynn's circle of support has been growing by
leaps and bounds and, while that is an item that will never be fully
crossed off my list, it makes my heart happy to know that she
continues to gain true friends who will be there for her if I have to
leave her earlier than I would like.</div>
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<tr style="font-family: Georgia,"Times New Roman",serif;"><td class="tr-caption" style="text-align: center;"><b><i><span style="font-size: xx-small;">Kylynn Aria</span></i></b></td></tr>
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<tr style="font-family: Georgia,"Times New Roman",serif;"><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i><b>Kylynn and Sydney</b></i></span></td></tr>
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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 <a href="http://www.celticthunder.ie/">Celtic Thunder</a>
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. <br />
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<tr style="font-family: Georgia,"Times New Roman",serif;"><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i><b>Neil, Me, & Ryan!</b></i></span></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvAeyybx825yOjd-EuAIZMm1f7KnTy_FSuBMLhinhJCC94xqds27lWYR9RMNLMlmqbr81_B7rEuCij5-hhNyke236W0vJxXswFcjvEpjQjLbRdwpFshRbg_a8udTZq54gaW8DtofgRHQ8/s1600/20120512_232402.jpg" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="150" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgvAeyybx825yOjd-EuAIZMm1f7KnTy_FSuBMLhinhJCC94xqds27lWYR9RMNLMlmqbr81_B7rEuCij5-hhNyke236W0vJxXswFcjvEpjQjLbRdwpFshRbg_a8udTZq54gaW8DtofgRHQ8/s200/20120512_232402.jpg" width="200" /></a></td></tr>
<tr style="font-family: Georgia,"Times New Roman",serif;"><td class="tr-caption" style="text-align: center;"><span style="font-size: xx-small;"><i><b>Neil & Ryan holding a message for Kylynn</b></i></span></td></tr>
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The last item that I recently checked off my bucket list was also at the Acoustic By Candlelight concerts. Ryan and Neil sang a mixture of their own songs and ones that were written by others. Because of the length of the concerts, the guys couldn't possibly sing <i>all</i> their songs but I was hoping for one song in particular of Ryan's. Ryan wrote a song named, "The Village That They Call The Moy" and it was written about the village that he grew up in, in Northern Ireland. I've never been to The Moy, my family that is from Ireland is not from the north but rather way down south in county Cork, but for some reason I adore this song by Ryan above all the others that he has written. Luck favored me again and Ryan sang "The Village That They Call The Moy" not at one concert that I went to, but at both! I was a happy girl!</div>
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So, that is four items crossed off my list in the matter of a month. It makes me nervous to check so many things off so quickly. I think I need a longer list! I am so blessed to have gotten to see all of these wonderful events take place, and let's face it, I am extremely blessed to still be here and doing so well. I love joyful days like those I have been having and I will keep that joy with me as reinforcement for my umbrella so that I may be able to weather even the rainiest day.</div>
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<br /></div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-13910629538881754592012-03-18T20:41:00.006-05:002012-03-18T21:14:33.866-05:00Flying CasualWow! 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!<br /><br />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.<br /><br />In other n<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsJiEO-cM2W0zQVxRVx5olW5e2qLhxXOXfsiLzh8ry9RZ9fMaFoB3xlVxkFJxDLY3AeqylopiH1rBD93arwEwlXS8Mz3djaKyyoDVAznHCvSVtd5-oZNHXgT3WfFaKJyBRv0fHQlUmH2E/s1600/100_0924.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 168px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsJiEO-cM2W0zQVxRVx5olW5e2qLhxXOXfsiLzh8ry9RZ9fMaFoB3xlVxkFJxDLY3AeqylopiH1rBD93arwEwlXS8Mz3djaKyyoDVAznHCvSVtd5-oZNHXgT3WfFaKJyBRv0fHQlUmH2E/s200/100_0924.JPG" alt="" id="BLOGGER_PHOTO_ID_5721425530057863618" border="0" /></a>ews, 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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF739uWVN3VoqU9Up2ykVsSlIj7UdA_1mUml2AEHARNwlnUnH0B-zI0RMty3YLTDmoobgTz9XtGXkGlkIuQQ0mZPMvv7odIAcAuFMdRb8v91cDNq_DRLFpK-5Y-ZLJlw-M0SLF5U6Clek/s1600/100_0979.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 104px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiF739uWVN3VoqU9Up2ykVsSlIj7UdA_1mUml2AEHARNwlnUnH0B-zI0RMty3YLTDmoobgTz9XtGXkGlkIuQQ0mZPMvv7odIAcAuFMdRb8v91cDNq_DRLFpK-5Y-ZLJlw-M0SLF5U6Clek/s200/100_0979.JPG" alt="" id="BLOGGER_PHOTO_ID_5721425688335151058" border="0" /></a> 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!<br /><br />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:<br /><blockquote></blockquote><blockquote></blockquote><blockquote>Luke: Vader's on that ship.<br />Han Solo: Now don't get jittery, Luke. There are a lot of command ships. <span style="font-style: italic;">Keep your distance</span>, though, Chewie, <span style="font-style: italic;">but don't look like you're trying to keeping your distance</span>.<br />Chewbacca: [barks something]<br />Han Solo:<span style="font-style: italic;"> I don't know.</span><span style="font-weight: bold; font-style: italic;"> Fly casual.</span><br /></blockquote><br />That's me, I'm flying casual, keeping my distance from cancer and Mayo without <span style="font-style: italic;">looking</span> like I'm trying to keep my distance. :)<br /><br />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 <span style="font-style: italic;">flying casual!</span><br /><div style="overflow: hidden; color: rgb(0, 0, 0); background-color: rgb(255, 255, 255); text-align: left; text-decoration: none; border: medium none;"><br /><br /></div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-23888812023367204652011-11-14T20:19:00.004-06:002011-11-14T21:11:44.942-06:00Small ThingsLife 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.<br /><br />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 <span style="font-style: italic;">ecstatic</span> to give her the last one, to know I was present for so many big events in her life.<br /><br />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.<br /><br />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 <span style="font-style: italic;">want</span> 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.<br /><br />The second small thing that happened was that Kylynn had her first sleepover with at friend at <span style="font-style: italic;">our</span> 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.<br /><br />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.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-44809617743431564612011-07-29T20:50:00.010-05:002011-07-29T22:24:10.156-05:00Holey Guacamole!Yes, "holey" as in "having holes" and "guacamole" as in "mostly avocados". Allow me to explain...<br /><br />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.<br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqwYQMnnO9jmFrEqVOFTLeg4qDLoYkxg-_ba8fBa5wXzyu6iOc35s711wQCIASCsUDqT1j8HEuTFID8V-nEiT12CzkkRDZwG6FPsopbSGV_iUIdDIeMv3N-LLSuDZI4NBR6z8jkI6QDAM/s1600/100_0171.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 146px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqwYQMnnO9jmFrEqVOFTLeg4qDLoYkxg-_ba8fBa5wXzyu6iOc35s711wQCIASCsUDqT1j8HEuTFID8V-nEiT12CzkkRDZwG6FPsopbSGV_iUIdDIeMv3N-LLSuDZI4NBR6z8jkI6QDAM/s200/100_0171.JPG" alt="" id="BLOGGER_PHOTO_ID_5634975287989171266" border="0" /></a><br /><br /><br />So, for a normal person, your liver is on your right side.<br /><br /><br /><br /><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4vh-F0sHj_mbduHSykqiuTo2dEkT1zltE2bga_k5hYJA2VX_KsBJfkxdPLJfu4LcrfmYBZ0_zINcCyGBGRJxOwNmLM7G_xrOtGt-CykxtJcdbo4YhTf8SmCRzAftivVR7GaD5675bFak/s1600/100_0172.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 188px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh4vh-F0sHj_mbduHSykqiuTo2dEkT1zltE2bga_k5hYJA2VX_KsBJfkxdPLJfu4LcrfmYBZ0_zINcCyGBGRJxOwNmLM7G_xrOtGt-CykxtJcdbo4YhTf8SmCRzAftivVR7GaD5675bFak/s200/100_0172.JPG" alt="" id="BLOGGER_PHOTO_ID_5634975649384964562" border="0" /></a><br /><br />I, however, am not normal and due to surgeries and such, my liver is on the left.<br /><br /><br /><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjweUEA954rj7Vhx_ILry9iuKSwYaoC7sqP98YhsvXc1GHa8abIO44YwC4vZltSZUygfSn9U5QGWvfyHJoVyMh7n-kajSLq72pUCan0mIOXPaMRr9F2K85LBNOAyy4wtpH90txWF0LsE_c/s1600/100_0173.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 200px; height: 152px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjweUEA954rj7Vhx_ILry9iuKSwYaoC7sqP98YhsvXc1GHa8abIO44YwC4vZltSZUygfSn9U5QGWvfyHJoVyMh7n-kajSLq72pUCan0mIOXPaMRr9F2K85LBNOAyy4wtpH90txWF0LsE_c/s200/100_0173.JPG" alt="" id="BLOGGER_PHOTO_ID_5634976119288979618" border="0" /></a><br />This, folks, is an avocado.<br /><br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrTrR2cfCewFh7n8oPaYP5Fvn4G2cBzZymngKnuk4mXUgMNUH_hkrqPipaSYQgqgyyLsPGXsrhhwzADFp8J9FWQTloE0JBIE5q19lSdZKS5LYPuLhXrJmV4mH6rtYLoR1HHKOrsfKX8X8/s1600/100_0174.JPG"><img style="float:right; margin:0 0 10px 10px;cursor:pointer; cursor:hand;width: 200px; height: 178px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgrTrR2cfCewFh7n8oPaYP5Fvn4G2cBzZymngKnuk4mXUgMNUH_hkrqPipaSYQgqgyyLsPGXsrhhwzADFp8J9FWQTloE0JBIE5q19lSdZKS5LYPuLhXrJmV4mH6rtYLoR1HHKOrsfKX8X8/s200/100_0174.JPG" alt="" id="BLOGGER_PHOTO_ID_5634976560081481954" border="0" /></a><br /><br /><br /><br />And here is a liver to avocado size comparison for you. Can you say ouch!?<br /><br /><br /><br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSpdYsmPYr1I1dODCZu42gag2G-9VA3zuiy1cVBXBpddawT1qGjnhch-SPw9t5IesALMT2bk-xisZy857Ats6ACr3SNWUB4Lvcn23uPNt14rmAhTL9qOlDGK0cHlu86SCUNUURsTY3v5A/s1600/100_0175.JPG"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 176px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSpdYsmPYr1I1dODCZu42gag2G-9VA3zuiy1cVBXBpddawT1qGjnhch-SPw9t5IesALMT2bk-xisZy857Ats6ACr3SNWUB4Lvcn23uPNt14rmAhTL9qOlDGK0cHlu86SCUNUURsTY3v5A/s200/100_0175.JPG" alt="" id="BLOGGER_PHOTO_ID_5634977514145970978" border="0" /></a><br /><br />Where did I get a plush liver? I know a guy. *wink wink*<br />Look! I have plush lungs too!<br /><br />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.<br /><br />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 <span style="font-style: italic;">inside</span> 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.<br /><br />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.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-34805569709141228152011-05-17T12:34:00.008-05:002011-05-24T23:37:14.112-05:00Life without Harmony<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm1b3Y4Bgf3eY7P1PiQVFqfTqJVRqBbrw16FLRrd84cRc1MwSZJg1GiiDOcc5eL8K29F8sIdKQwV1k0KYTHAT5mkaCUR4sWc4wXCiJg2_H_pjPDHWEBR9NLsTd1d9Lq7OUqDHx0MOtbIs/s1600/Harmony.jpg"><img style="float:left; margin:0 10px 10px 0;cursor:pointer; cursor:hand;width: 178px; height: 200px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgm1b3Y4Bgf3eY7P1PiQVFqfTqJVRqBbrw16FLRrd84cRc1MwSZJg1GiiDOcc5eL8K29F8sIdKQwV1k0KYTHAT5mkaCUR4sWc4wXCiJg2_H_pjPDHWEBR9NLsTd1d9Lq7OUqDHx0MOtbIs/s200/Harmony.jpg" alt="" id="BLOGGER_PHOTO_ID_5610508152795495186" border="0" /></a><br /><br />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.<br /><br /><br />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 <span style="font-style: italic;">truly</span> 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.<br /><br />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.<br /><br />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 <span style="font-style: italic;">same</span> 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.<br /><br />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.<br /><br />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.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com2tag:blogger.com,1999:blog-5196026267349758356.post-13334435354422706472011-05-02T21:20:00.003-05:002011-05-02T22:38:09.758-05:00It was a dark and stormy nightThroughout 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.<div><br /></div><div>On Friday this week I will be back up at Mayo having a surgery to burn three tumors out of my liver. I have had this procedure done at least four other times in the past and Kylynn has barely batted an eyelash. Tonight, however, she was all questions and worry. She wanted to know everything about how the procedure was done and was very concerned about exactly how the doctors knew where the tumors were and how they knew they were burning the right parts of my liver. I explained how good my doctors are and how they are the same doctors that have done this procedure on me four times before with excellent results and I explained about the equipment that the doctors use. I thought we were doing okay but then Kylynn looked up at me with her lip trembling and her eyes full of tears and said, "But it's hard to trust those doctors, Mommy, I just don't know them." And so we had a tearful discussion about faith and trust but I do not feel at all like I reassured my baby much. I wanted so much to just tell her that it was all going to be okay because I so much want that to be true, but I know how empty and not reassuring that sounds when I am told that. I don't know if everything is going to be okay, I, myself, worry all the time that things are not going to be okay. So the best I could do was hold my crying child and tell her how very much I love her. And though that is a lot, it feels woefully inadequate in the enormity of the situation.</div><div><br /></div><div>Kylynn's second worry of the evening was her overwhelming worry. She wanted to know what she should do if she started crying tomorrow at school because she was so worried. She asked if other kids cried because they were worried about stuff like this. She worried that her friends wouldn't understand why she was so upset and worried. We addressed all these concerns but what breaks my heart is that she should have to have these concerns at all. She's not even seven years old yet, this is a lot to ask a child to carry.</div><div><br /></div><div>It has been a long evening with my little girl but she is finally curled up asleep next to me as I type this. Our prayers tonight have been for trust and understanding, for courage and faith, and for peace in the belief that love is <b><i>forever</i></b>, even beyond our rainiest day.</div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-29557756013862196122011-01-11T22:07:00.024-06:002011-01-13T08:54:50.987-06:00Once Upon a Time, 5 Years Ago...<blockquote>"...B<span style="font-style: italic;">ut we get the strength to carry</span><span style="font-style: italic;"> on</span><br /><span style="font-style: italic;">And build a life of our own making</span><br /><span style="font-style: italic;">We thank the Lo</span><span style="font-style: italic;">rd for each new day</span><br /><span style="font-style: italic;">And for every breath that we are takin</span><span style="font-style: italic;">g</span><br /><br /><span style="font-style: italic;"> It's a good</span><span style="font-style: italic;"> life</span><br /><span style="font-style: italic;"> Far from the high life</span><br /><span style="font-style: italic;"> And I thank God that this was my life" </span><br /><span style="font-size:78%;">- "This Wa</span><span style="font-size:78%;">s My Life", Celtic Thunder</span></blockquote><span style="font-size:78%;"><br /><br /></span><span style="font-size:100%;">Five years ago I got news that changed my life forever. It was a very Grey's Anatomy kind of moment. I was there in my hospital bed and in walked a doctor and about 5 interns and they all stood around my bed while they explained that I had cancer. Of course, they probably weren't prepared for my response, which was to spend the next half hour explaining to them exactly why I couldn't have cancer. You know you're in bad shape when your argument includes the phrase, "Maybe it's just hepatitis." In any case, as it turns out I did, and do, have cancer. Sort of a sucky way to start off 2006 but there you have it. My first treatment was a huge surgery in which almost three quarters of my liver</span><span style="font-size:100%;"> was removed. And so began my cancer journey. My life would<br />never, never be the same again.</span><br /><span style="font-size:100%;"><br /><br />I feel that I have much that I could say about the past five years of my life and yet, at the same time, I feel I don't know what to say at all. So I’ve decided to not say much (I know, shocking, huh?) and instead share with you some pictures from the last five years.<br /></span><br /><span style="font-size:85%;">Okay, this first picture is actually from the end of 2005 but I wanted to include it. T</span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7qoyDqYQ7hgAt4yAg6DMDQ2Q1lwjIt8jWFkYTBebRJanMZjNdCTV0w4kwWg8XzfIL2pMbxbWfTXsuQMBfkO7aoyERgilOAwO3XkZ7Y3G7NDBMVA-ryOPCQ0SLta3wNl44LZytDhEqT2Q/s1600/IMG_0118.JPG"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7qoyDqYQ7hgAt4yAg6DMDQ2Q1lwjIt8jWFkYTBebRJanMZjNdCTV0w4kwWg8XzfIL2pMbxbWfTXsuQMBfkO7aoyERgilOAwO3XkZ7Y3G7NDBMVA-ryOPCQ0SLta3wNl44LZytDhEqT2Q/s320/IMG_0118.JPG" alt="" id="BLOGGER_PHOTO_ID_5561536107073839698" border="0" /></a><span style="font-size:85%;">his picture was taken at my sister's house and this trip to see her is really my last whole memory that is untainted by cancer. Soon after arriving home form visiting my sister I was in the hospital and then my whole world changed.</span><br /><br /><br /><br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/kTZ_54fWBpU?fs=1&hl=en_US"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/kTZ_54fWBpU?fs=1&hl=en_US" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object><br /><span style="font-style: italic;font-size:78%;" >The music is "Cal/Local Hero" by Phil Coulter for Celtic Thunder</span><br /><br /><span style="font-size:100%;">Five years! And they have been five pretty good years. Five! And at the beginning of all of this the doctors weren't even sure I'd make it one year. And so I head into the next five years filled with hope and ready to walk through whatever comes my way. No, my life hasn't gone exactly the way I thought that it would but <span style="font-style: italic;">this is my life</span> and, rainiest days and all, I wouldn't trade away a second of it.<br /></span><blockquote><span style="font-size:100%;"> <span style="font-style: italic;">"...</span></span><span style="font-style: italic;">And looking back on all the years</span><br /><span style="font-style: italic;">The loves, the sweetness, and the sorrow</span> <span style="font-style: italic;"><br />Have made me what I am today</span> <span style="font-style: italic;"><br />And I'd do it all again tomorrow</span> <p style="font-style: italic;">It's been a good life<br />Far from the high life<br />And I thank God that this was my life</p> <p style="font-style: italic;">We can't deny life<br />How it flies by, life<br />And I thank God that this was my life"<span style="font-size:78%;"><br /></span></p><p style="font-style: italic;"><span style="font-size:78%;">- "This Wa</span><span style="font-size:78%;">s My Life", Celtic Thunder</span></p></blockquote><p style="font-style: italic;"><span style="font-size:78%;"></span></p><p><br /></p><span style="float: right;"><span style="font-size:85%;"><br /><br /></span><br /></span><span style="float: right;"><br /></span>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-86005646342066518202010-11-03T21:24:00.024-05:002010-11-04T00:19:25.441-05:00A Book by its Cover<div><span class="Apple-style-span" style="color: rgb(12, 16, 19);font-family:Verdana,'Trebuchet MS',Arial,Helvetica;font-size:10px;" ><blockquote><p style="font-style: normal; font-variant: normal; font-weight: normal; font-size: 10px; font-family: Verdana,'Trebuchet MS',Arial,Helvetica; color: rgb(12, 16, 19);">[Scene from Friends: Central Perk, time lapse. Phoebe is now looking at the covers of two different books.]</p><p style="font-style: normal; font-variant: normal; font-weight: normal; font-size: 10px; font-family: Verdana,'Trebuchet MS',Arial,Helvetica; color: rgb(12, 16, 19);"><b>Chandler:</b> Are you judging them by their covers? Because you’re really not supposed to do that.</p></blockquote><p style="font-style: normal; font-variant: normal; font-weight: normal; font-size: 10px; font-family: Verdana,'Trebuchet MS',Arial,Helvetica; color: rgb(12, 16, 19);"></p></span></div><div><br /></div>I can't tell you how many times, upon learning that I have cancer, people have said something to the effect of, "But you look so good! I never knew!" And while I appreciate the compliment and am truly grateful that I don't look like what people imagine a cancer patient should look like, it serves as a constant reminder to me that you never can tell about a person just by their outside.<div>For Example:</div><div><br /></div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4Vuum2XV0fAr9Uq4wy8KKXI_qpbzLSSkbtWnvVX9T-ihyKjKZS4gd_AGpr4WmNQj6j2NaYqNR2n3MyjTsKeojgq0O9Bnq5efDiiscMmpjCJmF6o44RFe4saFcRIvPmQeRT3T37yxkzMg/s200/Eric.jpg" style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 133px;" alt="" id="BLOGGER_PHOTO_ID_5535519506214686290" border="0" /></div><div>This is Eric. By looking at him you would probably never guess that he swears like a sailor when he hits his head on something or stubs his toe... but he does. He also is great with computers and cars and he has spent a bunch of his free time helping others through programs like Habitat for Humanity and the C.A.R.S. ministry. And he often remembers that his wife is a sucker for dark chocolate and buys it for her without being asked.</div><div><br /></div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7EOBJ3xTXpssy25mS_hu-1n4QHnPvWyRtc8yh3mEx36sm1mSjVUTmCs6gvFumh9Z6IyRlQKdeVKimU4H5UWb_82652nODY__nJgLSjlruADruQsV9BQlpX2iYhkzmEcxaPnNxiKP3GlQ/s200/Ken+and+Jeffy.jpg" style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 200px; height: 150px;" alt="" id="BLOGGER_PHOTO_ID_5535531580378928274" border="0" /></div><div></div><div>These two jokers are Ken and Jeff, my brothers. To look at Ken you might not know that he has traveled to places like Honduras and Guatemala with Habitat for Humanity, but he has. And you might not see his ingenuity, creativeness, or genuine care for others, especially his family, just by glancing at him, but it is there. And to look at Jeff you might see his humor and love of fun, and that is something that I love dearly about him. But you might not right away see his depth and strength, his thoughtfulness and intelligence, though all those things lie within Jeff as well and are part of why I love him so well.</div><div><br /></div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgXFfOGsw_9m7RAEWufnQrT-M4E11O9xLxvUlOCXedOR9HUF-_OGqcMDoaP7EOVQIGHALwrC_zXBtFPiX-7K3G9Xz6zOVbwhUKKSrzZn09gZ_KSHd8QA7G5abrq2gYH-2Eq_7vsuU0qN04/s200/Julia.jpg" style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 151px; height: 200px;" alt="" id="BLOGGER_PHOTO_ID_5535527466445326178" border="0" /></div><div>Here is Julia, one of my sisters. To glance at her you might see the beautiful and shy mother of a sweet little girl. But there is no way to tell, just by looking at her, that she holds strong convictions and has great strength of character. She is a force to be reckoned with when she gets angry or feels strongly about something. And though she is tiny, she is one tough gal! And she is going to <i>ROCK</i> as a foster mom!</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj404Onxo5H65fofdZDe1TxgWnsIe6heFKSn_o71kgDBXbNoKo7U1mOmPbYGcUiskA-rYDDEXpTWZCuTzlg2yrvB4oWg8-P1xuxhSBQW__rb7KvYEWSRo7J-7-mf-DenBKjOAnL-NMHe8Q/s200/Amy.jpg" style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 177px; height: 200px;" alt="" id="BLOGGER_PHOTO_ID_5535531061502380082" border="0" /></div><div>Take a look at Amy, my other sister. What do you see? Likely you see a beautiful young woman who can be shy and outspoken, by turns. And while that is true, what you can't see by looking at her is that she is a strong, determined, intelligent mom of <i><b><a href="http://www.ethiopiascalling.blogspot.com/">three</a></b></i> who started her own business at a young age.</div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><br /></div><div><img src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgGR63cF5OoUlthZMKZV2NBmzZWF1CepeyFBYqT0LTbOkS58j3n9kig5uTIlXeSReQnLKcK4unzbxYhn8-8OaV9m_l7ciMYIZ7ee_vDEwc6vQngEw24yZEDy51Knn3NJRbJSWUouQxxJIs/s200/Aaron.jpg" style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 150px;" alt="" id="BLOGGER_PHOTO_ID_5535533184530246818" border="0" /></div><div><br />And this is my cousin Aaron, actually, he's more like a brother to me. To look at him you might think, "Well there's a handsome and intelligent looking guy." And you would be right on both counts. But would you guess he's a scuba diving, Shakespeare watching, always has time to help friends and family, deep thinking, fun loving, great chef kind of guy? Well, he is!</div><div><br /></div><div><br /></div><div><br /><br /></div><div>Who knew just by looking at them? And that is just character stuff, that doesn't speak at all to what troubles each may have weathered or what burdens they might be carrying. You never can tell. So many people that I meet everyday never have a clue about the quiet battle I am waging with cancer, and that's okay. I am sure that there are similar difficulties or burdens in the lives of people I encounter everyday that I am ignorant of. And that's okay too. It's enough for me to be who I am, know what I know. And the phrase, "But you look so good, I never would have guessed." has become a call to compassion and patience, and a reminder that others are carrying unseen burdens AND unseen treasures too.</div><div><br /></div><div>And even on the rainiest day, when it seems that all people see are our outsides, there are little reminders that we, also, are called to compassionately look beyond the obvious and see others for who they truly are, scars, flaws, beauty, and all! And there is the hope that others will follow our lead in "looking beyond the cover" and <i>that</i> could lead to far fewer rainy days indeed!</div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-51894578279898002472010-09-09T20:12:00.005-05:002010-09-09T21:42:26.192-05:00Choosing My Own AdventureDid you ever read those books as a kid, those <i><a href="http://www.cyoa.com/public/index.html">Choose Your Own Adventure</a></i> books? Well if not, the basic gist of the series was that the stories were told as if you, the reader, were the main character and every now and again in the story you get to make a choice about what you, the main character, will do. Depending on what choice you make the book tells you which page to turn to and the story continues until another choice needs to be made. These books were particularly fun because if you didn't like how the story ended, or even if you didn't like the direction in which the story was headed, you could just simply go back, make a different choice at one of the turning points, and then see where that story takes you.<div><br /></div><div>Well, not to ruin it for anyone, but life does not work like a <i>Choose Your Own Adventure</i> book. I mean sure, we all get to "choose our own adventures" to some extent, and, as it also happens in the books, some events in our lives are not of our choosing but are dictated by the Author. But unlike the book series, there is no flipping back a few pages, making a different choice, and seeing how that works out. Some days, though, I wish I could go back and make a few changes and maybe just get a peek at what that might be like.</div><div><br /></div><div>I know I cannot go back and undo my cancer, I know that my adventure has taken a turn that only the Author is able to do a re-write for. But sometimes I think I'd like to go back to that point where my story turned, to the point where I split into two Beccas, and, just for a day or two, I'd like to walk the path of the Becca who doesn't have cancer. </div><div><br /></div><div>I've been more than four and a half years on this cancer road, I am tired, yet I choose to continue on and, though it would take too long to explain it here, that choice doesn't really feel like a choice. But I can remember back to when I was not "cancer Becca" but just simply Becca. I remember the fun of my childhood and the typical struggles of adolescence. I remember college, getting married, and more than anything else, being pregnant with and having my Kylynn Aria. I remember what I looked like, I have very clear pictures in my mind of all sorts of events from my pre-cancer life. What I cannot remember though is what it feels like, <i>physically</i> feels like, not to have cancer. And for some reason that makes me immensely sad. So that would be my first stop on my little excursion as "no cancer Becca", I would stop and make a conscious effort to store in my memory the physical feeling of a cancer-free body.</div><div><br /></div><div>After that I would like to just get a peek at what my life might have been like if I never had cancer. This year would mark my tenth year of teaching, what might that have been like to have been able to continue with the career that I decided upon when I was 13 and worked so hard to achieve? What stresses in my life, as it actually is, might have been lessened if I could have continued working? What sweet children have I missed out on meeting and how might the lives of the two best assistants, excuse me, I mean "paraeducators" :), be different if I were still teaching? How might my family be different? How much worry and stress would they all be spared if only we weren't all thrust into this world of cancer? What stresses at home would be less or nonexistent if I never had cancer? I wonder how I might look if I never had cancer. It's strange to think, but I'm sure I would look rather different. My hair would, for sure, be different. I would not have this lovely 7 and a half inch scar on my abdomen. And there are a million tiny changes that cancer and chemo and surgery have brought over the years that would all be erased. But the one change that "no cancer Becca"'s life would have that I so want to get a peek at, and at the same time, I don't really want to know about at all, the one that weighs heaviest on my heart, is that of my little Aria. What might Kylynn's life be like if she had been able to grow up with a cancer-free mom? It breaks my heart to contemplate that question for too long but I can't help but think the changes in her life would be significant. </div><div><br /></div><div>But then, the choice of "no cancer Becca" or "cancer Becca" was never mine, that choice was in the master plan of the Author. Just as the choice of having a mom with cancer or a mom without cancer was never a choice in Kylynn's life. So I must trust that this cancer plot line is integral to the story of both of our lives. And even on the rainiest day, when the outcome of the story seems grim and unavoidable, there is always another choice to be made, an adventure to be had, and the knowledge that the Author could change the direction of the story at anytime. </div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-90720380683172316032010-08-23T08:29:00.005-05:002010-08-23T09:03:50.797-05:00A Wing and a PrayerAwhile back this miraculous thing happened and I never mentioned it. I got an e-mail from a young woman who is fighting this same horrible cancer. Now imagine my surprise because there just aren't that many of us with this cancer, let alone <span style="font-style: italic;">young women</span><span>. But there <a href="http://lifewithoutdiving.wordpress.com/">Harmony</a> was, and we instantly fell into a friendship and formed a bond that I have no words for. And so Harmony and I talk through e-mail and enjoy each others blog posts. And one day, I hope to get to actually meet my friend, Harmony.</span><br /><br /><span>Now lately, I have been having a bit of a hard time. Cancer-wise things are looking pretty stable but for many other small reasons (so many of which can be tied back to cancer) I have been very stressed and been having a lot of anxiety. So I talked with my friend, Harmony, and that always helps. I know that down in Texas there is someone who is in a position so similar to mine that I know she can really sympathize with what I'm going through. I know that down in Texas there is a prayer being lifted up for me.<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgefJQRHfVXHqiQQSUhAIE08GAgOK8vgXZK9OoWpNg2N-vH5ynR3km5FpdJLVduOR-gh4-vVv5M3WX1kIQgyjPKLJhYtMW1zghlZDSL8NVcXjes8-kLuUUBM6ibIO2dqpUvp-s6w8Cpv68/s1600/IMG_7210.JPG"><img style="float: right; margin: 0pt 0pt 10px 10px; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgefJQRHfVXHqiQQSUhAIE08GAgOK8vgXZK9OoWpNg2N-vH5ynR3km5FpdJLVduOR-gh4-vVv5M3WX1kIQgyjPKLJhYtMW1zghlZDSL8NVcXjes8-kLuUUBM6ibIO2dqpUvp-s6w8Cpv68/s200/IMG_7210.JPG" alt="" id="BLOGGER_PHOTO_ID_5508605237771886466" border="0" /></a><br /><span>Then last week a small padded envelope showed up in my mail addressed to me and inside it was this beautiful little angel wing necklace and this note: "I have the same necklace - put this on, remember how strong you are, and trust in God to take care of you. Your body</span><span> a</span><span>nd God are a force to be reckoned with!!" My sweet friend, Harmony, had sent me this thoughtful physical encouragement to remind me that even on the rainiest days, there are friends who are standing in the same downpour that you are and that when it all seems like too much, they are there to lean on and sometim</span><span>e to, literally, bring you a wing and a prayer to help fly you out of your anxieties.<br /></span><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKP6C3RUwEeB43-6U8mohOsCCDvG0ndQ3mxCY77si1QrAkUMrIBawN7FMgKenfsboq-lEuyltenSbGa_jjj0iOSB8n1pDUQ_GA_DqYYvfsBkpJE8Rh3hPhLA7Q1XcUSu82xqtpWhizhzU/s1600/IMG_7214.JPG"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 200px; height: 141px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhKP6C3RUwEeB43-6U8mohOsCCDvG0ndQ3mxCY77si1QrAkUMrIBawN7FMgKenfsboq-lEuyltenSbGa_jjj0iOSB8n1pDUQ_GA_DqYYvfsBkpJE8Rh3hPhLA7Q1XcUSu82xqtpWhizhzU/s200/IMG_7214.JPG" alt="" id="BLOGGER_PHOTO_ID_5508605585753603858" border="0" /></a><br /><span>My dear friend, Harmony, I have said it before and I'll say it again now, I wish that you didn't have this horrible cancer, I wish no one did. But since you do have to have it, and so do I, I am so glad that we have found each other. We're going to make it, you and I, and we are going to change the way people look at cholangiocarcinoma!<br /></span>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com3tag:blogger.com,1999:blog-5196026267349758356.post-61305515096058593832010-07-31T17:54:00.003-05:002010-07-31T19:24:36.714-05:00Music instead of wordsFor whatever reason I cannot seem to find the words to say what I want to today, so I thought I'd play you a bit of music instead. I enjoy playing my harp more than I could ever express in words and I will share a bit of that with you today. Just please understand that I am by no means an expert player and I often play better when I'm not being observed (or recorded). I have found that often the music I gravitate toward will reflect the mood that I am in that day. I have also been blessed to have a harp instructor/friend who knows my personality and moods well enough to pick pieces that often reflect that as well. That being said, I hope you enjoy "The Foggy Dew" as much as I love playing it.<br /><br /><br /><object width="480" height="385"><param name="movie" value="http://www.youtube.com/v/yAqIKxKpvB0&hl=en_US&fs=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/yAqIKxKpvB0&hl=en_US&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-12603219755605514722010-06-18T20:51:00.003-05:002010-06-18T22:13:32.943-05:00Feathers, Hope, and TrustWe're all familiar with the little elephant, Dumbo, and his big ears, right? And do you remember how Timothy, the mouse, gave Dumbo a "magic feather" to give Dumbo the confidence to fly? And Dumbo flew. Then at the worst possible moment Dumbo lost his "magic feather" and with it lost his belief that he could fly. Of course, in the nick of time, Timothy explains to Dumbo that the feather was never magic and that he can fly without it and, of course, Dumbo finds his confidence in himself and flies without the feather. <div><br /></div><div>I think in all of our lives we occasionally have our own personal "Dumbo feathers" that we cling to to give us courage or confidence or reassurance. And, like Dumbo, when we lose those "magic feathers" we can lose our courage or confidence or assurance. Of course, in the end, it often turns out for us much as it did for Dumbo and we realize that we never really needed our "magic Dumbo feathers", or maybe that we did need them at one point but now no longer do. But that doesn't mean that we don't have our moments of panic when we find our "feathers" gone. It doesn't mean that we don't sometimes long to have our "magic feather" back. And it doesn't mean that we don't sometimes go through periods of uncertainty, indecision, and fear without that "magic feather". But ultimately, in the end, I think we all find ways to fly without our "Dumbo feathers", or at least I hope so.</div><div><br /></div><div>Today I partly lost and partly gave up the most unlikely of "Dumbo feathers", that being my chemotherapy. I met with my doctor up at Mayo Clinic and he went over the results of all my latest tests with me. As of yesterday, my liver is still full of holes <i>but</i> also still clear of tumors. My blood work all looks good. And the tumors in my lungs haven't grown at all. All fabulous news. Then my doctor started talking about my chemo. I've been on this latest chemo since last October and he said that normally the most benefit you're going to get out of most chemo regimens is seen in the first six months. We're on month eight now with my chemo and my tumors are stable but my side effects from the chemo are sort of sucky. Given all those facts and, of course, all sorts of doctor knowledge that I don't have, my doctor suggested a "chemo break". That meaning we would stop my chemotherapy and closely monitor my condition. My doctor's reasoning is that we have probably gotten most of the benefit that we could out of the chemo and that continued use is likely not having any really significant effect on my cancer but it is having a significant effect on how crappy I feel. He also said that he does not believe that stopping this chemotherapy is going to have any effect on my lifespan even if (and it sounded like a pretty significant "if") it had an effect on how quickly I have a recurrence/tumors start growing. That bit is a little harder to explain, but it did make sense. If my tumors start growing in a month or two of being off the chemo my doctors said that it is likely they would have started growing regardless of the chemo. But on the flip side, there is good possibility here that I could go for a good stretch without any recurrence or tumor growth and that could all be time without chemo side effects. And if things start to change and tumors start to grow my doctor still has options for me, more than a few, so it wouldn't be "end game"... at least, theoretically.</div><div><br /></div><div>But ultimately the choice was left up to me. My doctor would continue the chemo if I said so or he would cancel it if I said so. It wasn't an easy decision and I'm still not sure I made the right one, but today I gave up my "Dumbo feather" and stopped my chemotherapy. I traded in my "magic feather" for hope and trust. Hope that this was the right choice, hope that I can, indeed, fly without it. And trust in my doctor who has never yet steered me wrong. And, of course, that's not to say that I didn't need the chemotherapy to begin with, just that continuing it might be like clinging to a "magic feather".</div><div><br /></div><div>It is a strange place to be though. Am I in remission? No, not really, I still have a bunch or tumors. It's more like we have scared the enemy into hiding and are now we are hoping that we scared them enough to "keep their heads down" for a long long time but we are also watching and waiting for them to show signs of what their next move will be. And it's a tougher place to be in than I thought it would be. I feel like I should be doing something to actively fight this. I'd rather be active than reactive, but still the plan makes sense. </div><div><br /></div><div>Waiting is scary, especially without my "Dumbo feather", but even on the rainiest day (and this day is really rainy both emotionally and literally) there is the hope and trust that I will find that I no longer need my "Dumbo feather" and that I can, indeed, fly.</div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-60166360803133621102010-06-11T21:06:00.004-05:002010-06-11T22:03:40.476-05:00A bit of an updateSo, once again, I know it's been quite awhile since I've posted anything. Sorry about that. In any case, I thought I just give you all a quick update on how I have been and am doing.<div><br /></div><div>About 6 months or so back my chemo got changed from being the oral Xeloda to a combination of the IV chemo drugs Gemzar and Cisplatin. The frequency and amount of chemo that I have been receiving has fluctuated a good deal over the past months due to low blood counts but it seems we have finally settled into a schedule that my blood counts seem to be tolerating. I am currently receiving chemo once every three weeks. The chemo isn't horrible, it really could be much worse, but it's no spa treatment either, that's for sure. </div><div><br /></div><div>The last time I was up at Mayo, about 6 weeks ago, my scans looked pretty good. "Pretty good" meaning they showed that my liver is still free of tumors right now, full of holes but still tumor free, and that the tumors in my lungs have not grown at all. And I would agree with the doctor, that is indeed pretty good! So no changes were made to my treatment plan.</div><div><br /></div><div>Now I am heading back up to Mayo next week for scans on Thursday and meeting with my doctor on Friday followed by chemo if all goes according to plan. I am, however, a bit nervous that things this time may not look quite as good as they have been looking. A few weeks ago I got a bad sore throat followed by the loss of my voice for a few days and then that was followed by a deep chest cough. Over the next week or so the chest cough improved but then turned into this weird sort of lighter more gaspy (is that a word?) cough... and that cough hasn't gone away or gotten any better. And I have also started to have some upper back pain behind my lungs. So, I'm a bit worried about this doctor's visit. It could be nothing, and I really hope that it is, but it could also be the start of bad things to come. And the not knowing can drive you absolutely batty. </div><div><br /></div><div>I think it has got to be one of the worst things about cancer, not knowing if what could very likely be a "normal" ache or pain is indeed normal or may be a signal of something bad and cancer related. It makes you feel like a hypochondriac or a crazy person. I have actually laid awake some nights (yes, more than one) trying to "assess" my various pains and it makes me laugh to look back on it because I was thinking things like, "Now, does this feel like a liver tumor?" Like I would really be able to tell. Heck, I had tumors the size of a lemon before I was diagnosed and only had occasional pain and nothing that screamed liver tumor at me. And really, who sits there thinking, "Ah yes, this pain feels very liver tumor-like, I really need to call my doctor now"? So, you see, you can drive yourself crazy wondering and worrying, but then, on the other hand, if you just write every ache and pain off as being a "normal" one then you can land yourself in a whole heap of trouble by missing early signs of something that could turn bad quick. I guess the trick is finding a happy medium... I, personally, haven't found it yet.</div><div><br /></div><div>So that's where I am right now. Headed back up to get everything checked soon and worrying about it all in the mean time. But even on the rainiest day there is the knowledge that the rain will eventually stop, the waters will recede, the damage can be assessed, and work to repair any problems can begin.</div>Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1tag:blogger.com,1999:blog-5196026267349758356.post-13493656963633603272010-03-08T16:38:00.002-06:002010-03-08T18:12:05.576-06:00When the Winds are Howling...<span style="font-weight: bold;font-size:78%;" ><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHTzXibnNGTrMbhKgJZ5_DnzT1ty6SNirQ3A8jKEyETXvxPsCaOMTQ3wOlq2SHpI4WgqX3A9dCTVm5SdcGv-ZXl4aCJNpJetlB-DIFj0h9lubhdzW1PlxHOqZZZjLOt1GmaUJImM6g2_g/s1600-h/2832796785_cdefd58209.jpg"><img style="margin: 0pt 10px 10px 0pt; float: left; cursor: pointer; width: 200px; height: 133px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhHTzXibnNGTrMbhKgJZ5_DnzT1ty6SNirQ3A8jKEyETXvxPsCaOMTQ3wOlq2SHpI4WgqX3A9dCTVm5SdcGv-ZXl4aCJNpJetlB-DIFj0h9lubhdzW1PlxHOqZZZjLOt1GmaUJImM6g2_g/s200/2832796785_cdefd58209.jpg" alt="" id="BLOGGER_PHOTO_ID_5446395043515074482" border="0" /></a></span><br />So I know that change is part of life, and I wouldn't mind it if it was just an occasional light breeze or maybe even sometimes a moderate wind that blew through my life, but that doesn't seem to be how things are working out. The winds of change are not blowing gently but instead seem to be howling all around me. After awhile you get sort of used to it, you start to be able to tune out the chaos and fear, you tape your windows and build your little sandbag wall to hold back the floods, you buy a good raincoat, boots, and strong umbrella, and it works... most of the time, but there are days that, like it or not, and try as you may to fight against it, you get swept up into the storm and the reality of it all crashes over you. These storm swept moments can come at anytime, without warning, but most often I find that they creep in at night when all is quiet and my mind has a little time to try and rest after the craziness of the day. In the quiet all the "what ifs" start to play themselves out in my, all too vivid and active, imagination.<br /><br />Sometimes my imagination focuses on my actual cancer diagnosis. The fact, the reality, that <span style="font-style: italic;">I</span> have cancer is something that, on most days, doesn't seem quite real. I mean, I <span style="font-style: italic;">know</span> that I have cancer, the chemo treatments, if nothing else, are a constant reminder of that, but it's something so big and so foreign that it's hard to wrap my mind around. And because of that, I am usually, blessedly, able to push that fact to the back of my mind and not really think about exactly what my cancer could mean. But, in the quiet, reality has a way of creeping in and I find myself battling the storm again. I think, sometimes, of how, while he is positive and optimistic and pleased with how I am doing, my doctor does remind me from time to time that my condition could change at anytime and maybe change quickly. My liver is right now free of tumors and that is fantastic, but at the same time, my liver <span style="font-style: italic;">is</span> full of holes, some relatively large, from where they have burnt out those tumors. Because of the holes, and because even though it is regenerated to pretty much normal size, I, in truth, only have the left lobe of my liver, my liver is more fragile than a "normal" liver and could, for lack of a better way to put it, just decide to not work, or not work as well, at any time. I feel okay, I look okay, and right now my liver is functioning really well, so that is a fact that is easy to push out of my mind, but sometimes it does creep back in. And think about that, it's terrifying! What would happen if my liver started to fail? I am not eligible for a transplant. Liver failure, from what I understand, is painful. What would I do? I am not really that scared of death, but the actual dying frightens me. And then what about my lungs? The tumors are spread throughout both my lungs and cannot be surgically removed. The chemo is, right now, keeping them from growing and possibly even shrinking a few, but for how long will the chemo work? And if it stops working then what? I've kind of gotten used to being able to breathe and think it might be difficult if that were to change. And I laugh about it now, but sometimes, when I am out in the howling winds, it's more than a little scary.<br /><a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5xC4ET8awMiDqpx9EBNyqkbY3gDHyA_kCXBcSXKpLWju0dC5mPtqwtNKlC7otxmBKp80V_HOHyklV2eHZOkyXJzrH3HwI45X4NUx7At0NBp4EH7c2TMi_cki1-cmUe3IxIfZUuX9CEuE/s1600-h/IMG_6252.JPG"><img style="margin: 0pt 0pt 10px 10px; float: right; cursor: pointer; width: 200px; height: 150px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5xC4ET8awMiDqpx9EBNyqkbY3gDHyA_kCXBcSXKpLWju0dC5mPtqwtNKlC7otxmBKp80V_HOHyklV2eHZOkyXJzrH3HwI45X4NUx7At0NBp4EH7c2TMi_cki1-cmUe3IxIfZUuX9CEuE/s200/IMG_6252.JPG" alt="" id="BLOGGER_PHOTO_ID_5446395571032895426" border="0" /></a><br />And then there is my biggest fear. Like I said, I'm not really scared of death. That is to say, I'm not all that scared about what will happen to me after I die. But I am scared of the actual dying and, more than that, I am scared about what will happen in the lives of those I leave behind. Not that I imagine myself to be all that important, and while they may miss me, most people would be able to carry on without me, but it is my little Aria that scares me the most. Of all the people in the world, she is the only one who I can convince myself that she <span style="font-style: italic;">needs</span> me. And I love that little girl like no one else on this earth. Yes, I love my husband and my family and my friends, with all my heart I love them, but my little girl is different. I love Kylynn in a way only a parent, maybe only a mother, could understand. And sometimes the thoughts of what it might be like for her if I died creep in and I am thrown out into the storm and it is from these thoughts that it is most difficult for me to find my way back from. Some nights I just sit by my sleeping little girl and cry. How long do I have with her? Will I get to see her grown up? Will I at least be able to see her into her teens where she might be better able to understand and cope with my death? And then there are all the other questions that fly though my mind. Who will comfort her when she cries in the night? Who will iron her shirts for school? Who is going to make her lunch and remember to fill out her forms and permission slips for school and help her pack her backpack? Who is going to take her to school? Who is going to take care of her when she is sick? Who will help her with her worries and problems? Who will plan her birthday parties and take her to her friends' parties? There are thousands of these questions and, for sure, her daddy would take up many of these duties, but it's not the same as having mommy. Above all thoughts and fears, the ones concerning Kylynn are the ones that trouble me the most. How could I leave my precious girl?<br /><br />Things are constantly changing in my life. There often seems to be no solid ground and constant motion is the only way to stay above it all. But that is exhausting and sooner or later I have to stop and rest. And sometimes in what should be rest, the storm sneaks in and crashes over me, and maybe that is okay. It is, after all, only sometimes and a good cry does make me feel a little better. Even on the rainiest day, when the winds are howling in the dark of the night, there is the promise of the sun in the morning and the renewal of hope. And we carry on, we have to, there is no going back and changing the past but there is today and tomorrow...Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com4tag:blogger.com,1999:blog-5196026267349758356.post-79386828107729497692010-03-04T21:26:00.003-06:002010-03-04T21:29:43.967-06:00I'm still here...Hey all! I realize that it has been quite awhile since I posted anything. I'm sorry about that. Chemo schedule coupled with a daughter with endless energy has been exhausting. Trying to make time for everything but failing miserably. I have posts rolling about in my brain just need to gather up the time and energy to put them here. Soon, I swear. Thanks for understanding. Love you all!Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com0tag:blogger.com,1999:blog-5196026267349758356.post-54017845075589175692010-01-10T23:38:00.004-06:002010-01-11T00:18:19.019-06:00No Ribbons for Rebecca perhaps, but there is this...<a href="http://www.cholangiocarcinoma.org" target="_blank"><img src="http://www.cholangiocarcinoma.org/images/badge3.gif" border="0" /></a><br /><br />So I'm sure you all have heard more than you have ever wanted to about the whole bra color posted to support breast cancer thing on Facebook. Personally I've heard enough too. I think it was started with good intentions and has since gotten blown out of proportion. But that craziness tipped off a bit of discussion among some of my friends and me about my cancer, cholangiocarcinoma or bile duct cancer. We got to talking about how the rarer cancers, such as mine, get little publicity, little to no funding for research, and there is very little available in the way of support. All of this leaves those of us with rare cancers feeling alone and sometimes even a bit slighted. Now, don't get me wrong, I do not begrudge anyone with <span style="font-style: italic;">any</span> cancer any and all research and support that they can get. Some people who I love dearly have or have had some of the well known cancers and I am so grateful that there is research and support out there for them. I just sometimes wish that it was also available for me. As far as I know, cholangiocarcinoma doesn't even have a ribbon color which has always prompted me to say, jokingly, that there are "No Ribbons for Rebecca". And usually I do mean it as a joke, but on the really bad and lonely days I have to admit that it does hurt a little to be in a cancer population that is so often overlooked. <br />So last night I was laying in bed, sick from a chemo treatment, thinking about all of this and I began to think how wonderful it would be if there was a cholagiocarcinoma conference some where some time. A place where survivors and those who love them could all come together. And where health care professionals who specialize in cholangiocarcinoma could come and share their knowledge. Oh I had a splendid time thinking about all the things that this conference could include and if it could have been dreamed into existence I'm sure it would have been last night. This evening I was thinking about it again and typed "cholangiocarcinoma conference" into a search engine just to see what would come up and to my delight I did get a rather good hit. The first thing that came up was not a conference date, but the next best thing, evidence that someone else has been thinking the exact same thing. <a href="http://www.cholangiocarcinoma.org/">The Cholangiocarcinoma Foundation</a>, a web site that I stumbled across some months ago on some other lonely night. Under their "get involved" tab, under volunteer, down towards the bottom of a list is "Annual Conference Chair" and a short description. As far as I can tell this conference has yet to be organized but still, it's in someone else's mind as well.<br /><a href="http://www.cholangiocarcinoma.org/">The Cholangiocarcinoma Foundation</a> site is a wonderful one for information about my cancer and a reassurance that I am not alone no matter how much I feel like I am. Like I said, months ago I found this site and actually submitted a picture to their "Faces of Cholangiocarcinoma" page, but then life go busy and I forgot to go back and look. But I did go look tonight, and <a href="http://www.cholangiocarcinoma.org/faces.htm">there I am,</a> it's a nice feeling. I guess I am not <span style="font-style: italic;">all</span> alone after all.<br />I guess it goes to show, even though I often feel alone in my cancer and I am sometimes saddened by the lack of research and support for my cancer, that even on the rainiest, loneliest day, there are rays of hope and who knows, if we gather enough of those rays we just may be able to light the way to a real answer.Rebeccahttp://www.blogger.com/profile/17582285474094738540noreply@blogger.com1