Sunday, March 15, 2015

Here's what's been going on:

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

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

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

Thursday, December 11, 2014

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

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

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

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

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

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

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

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

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

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

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