Wednesday, April 8, 2015

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

Me, Kylynn, Mona, Carl, and Eric
Me and my harp, Ashe

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

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

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.