Even On The Rainiest Day...

Life has been busy, as usual. I feel like I have been constantly running all over with Kylynn, taking her to her various different activities. One place that I recently took Kylynn was to see a seamstress and talk with her about getting my wedding dress made into a First Communion gown. It sounds like the woman we talked with is going to be able to make a beautiful gown for Kylynn, I am excited about that, but looking at my wedding dress got me thinking. I started thinking about Kylynn and her wedding day, someday in the future, if that is what she chooses, and I was, once again, wondering if I would be here to see that day. Then I started thinking that there was a time that I would look at my little girl and wonder if I would get to see her First Communion, and here we are, planning for it, looking forward to it.

In 2007 I made a journey half way around the world to a tiny village named Medjugorje and the one thing my, then 3 year old, Kylynn asked me to bring her home was a pink rosary. I came home with many pink rosaries with the thought that she would receive one for each of the big events in her life along with a letter from me, if I wasn't here. The first one that I planned for her to receive was one for her First Communion and I honestly didn't feel with any certainty that I would be here to give it to her myself. Yet here I am. My little girl is 7 years old now and I will be here to give her that pink rosary at her First Communion. I can't even begin to tell you how happy that makes me. Those pink rosaries hold so much meaning for me now. Each one is a milestone for Kylynn, an event I dearly want to be present for, and each rosary is a challenge daring me to fight harder. I will be so happy to give Kylynn that first pink rosary, but I will be ecstatic to give her the last one, to know I was present for so many big events in her life.

Another couple of little things came about in the midst of my everyday hustle and bustle whose significance would be easy to overlook, they are such commonplace occurrences, but I was lucky enough to reflect at the right moment and thereby see the wonder.

First, ever since I started playing the harp I thought about what a cool thing it would be to play Kylynn to sleep, to have her want me to play her to sleep. But things rarely work out the rosy way we imagine them, 7 year olds have their own agendas, bedtimes fall into set routines, and harp practice gets pushed off to times after Kylynn is asleep. A few nights ago, though, Kylynn was very insistent about falling asleep in my bed and then having me move her to her bed later. I argued a bit about this with her stating that I needed to practice my harp (it's in my room) and Kylynn simply replied that she liked listening to me play and that she would go to sleep and not argue or talk if I just let her stay in my bed and listen to the harp. I eventually agreed and, indeed, Kylynn kept her word and went to sleep without further talking or argument, but it wasn't until later that I realized that life had handed me a small gift, I got to play Kylynn off to sleep on my harp.

The second small thing that happened was that Kylynn had her first sleepover with at friend at our house this weekend. Again, this seems such a commonplace event that I almost missed the significance in it. Laying in bed last night I recalled a somewhat tearful conversation I had with one of my sisters about 4 years ago. I asked that, if something happened to me, she would allow Kylynn to have sleepovers with friends from time to time at her house as I thought parents might shy away from allowing their daughters to sleepover at the house of a friend with a single dad. My sister, of course, agreed and we moved forward with life. Saturday night as I sat, covered in glitter and paint, making crafts with two giggling 7 year old girls, I didn't see it, but here was another small gift, another event I feared I would never live to see. I am blessed.

And so you see, even on the rainiest day, in the midst of the muck and disguised as the everyday, there are small things, gifts and blessings, that really aren't small at all. We just have to learn to be still long enough to see and recognize them.

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

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




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









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







This, folks, is an avocado.








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





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

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

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

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

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


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

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

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

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

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

Throughout this whole cancer experience my daughter, Kylynn, has remained pretty unflappable and amazingly strong. She has, for the most part, not been overly plagued by fear and worry and for that I am so grateful. Sure she has had some rough patches, but in the grand scheme of things, Kylynn has weathered all of this cancer crap very well. One might think that she has done well because she isn't really aware of my whole situation, but that isn't the case. Kylynn is a very intelligent and inquisitive little girl and there isn't much about my cancer that we have kept from her or could keep from her even if we wanted to. She, from the beginning, has wanted to know everything right down to what color tumors are, saying that she feels more confident about the situation if she knows what is going on. So we have done our best to keep Kylynn informed as best we can while trying to stress our confidence in God and in my doctors. And, overall, it has worked well for us all. But every now and then I think reality catches up with Kylynn, as it does with me sometimes, and for such a young girl it must seem even more monstrous and overwhelming than it does for me.

"...But we get the strength to carry on
And build a life of our own making
We thank the Lord for each new day
And for every breath that we are taking

It's a good life
Far from the high life
And I thank God that this was my life"
- "This Was My Life", Celtic Thunder

"...And looking back on all the years
The loves, the sweetness, and the sorrow
Have made me what I am today
And I'd do it all again tomorrow

It's been a good life
Far from the high life
And I thank God that this was my life

We can't deny life
How it flies by, life
And I thank God that this was my life"

- "This Was My Life", Celtic Thunder