Wednesday, April 25, 2012

Chapter 2


I’m so beyond ready for summer break. The past two weeks have definitely proved it. I have realized that I'm quickly approaching the "burn-out" feeling. With that being said- here is my latest countdown: 1 more class, I more test, 1 final, 2 more clinical days and a few other not-so- worry some days and I'm halfway through- given that I pass!

I've been having a lot of thoughts about how my life needs tweaking, in a huge way. Reassessing to an extent. Evaluating what is most important to me. I've lost sight on these things over the last few months. More evaluation on the things that make me happy.

What really makes people happy?

Reassessing how I feel; what makes me truly happy; how I react to situations; how I don't react to some situations... Just life in general.

Last year, after realizing that it was up to me to make it happen for my family- and myself I became a fighter. I was not going to let cancer take over my life, instead I decided to take charge. I learned that saying what you feel and holding true to your beliefs, sometimes disappoint people, I've said many things out loud, when keeping them inside, may have been the better option.  Lately, I have held my breath when I probably shouldn't have.I feel inadequate. Not being there, when I should have been.

Not being able to say no, and clearly... My body is telling me that it's time to reassess.

This time last year, I promised myself that I would enjoy life more, stress a little less, relax a little bit. I've been going non-stop since the middle of August, being very productive, of course. I closed my eyes this morning and thought to myself, if I could just open them and have everything fall into place- that would be beautiful!

But, what I realized, is that I'm falling short, very short.

I haven't went full-blown grocery shopping since Christmas break. I'm pretty sure it's the end of April, right? I haven't cooked a home cooked meal in at least 3 weeks. I questioned myself tonight- when did I become that mom? So while I'm falling short with my husband, and children, my friendships lack too.

My friends, the ones who have waited for me to come around. The new ones (they are pretty special too), but they never knew the "Kristin" that totally checked out. I don't have time for them either. I am not sure if its lack of organization, or what it is. Maybe, just lack of being able to give anymore of myself.

So, in 3 weeks... I'm taking a step back. Fine tuning myself.

Not living up to expectations- I'm not good with it. It just sucks when you know you are capable of more. More tweaking.

I'm in serious need of satisfaction and fulfillment. I know it's vague- but, I'm trying not to disappoint myself.

I guess that coming up on our one year anniversary of cancer, hasn’t helped the situation. Some days I think I'm moving forward, and some days I feel like I'm backtracking.  For the most, I think I have come to place where my moments of sadness can exist right alongside my joy, thankfulness, and need to celebrate. I know deep down, that our story is one of survival and of life...a deeper and fuller life. Some days are still harder than others. Today is one of them.

I have had the hardest time writing this because I am still not sure how I feel. I am thankful that this week has not been full of tears, yet. So far it has been much easier than I had anticipated . I am still at a point where I have no explanations for my feelings.

I was at a doctors appointment last week and was discussing this past year in review. And the nurse practitioner asked me if I needed "something" to help me through all of this. Do I really look that pitiful? I sure hope not. Most people have no clue about the daily struggles that I have. I strongly feel that I handle them well, but then again, I'm not on the outside looking in.

So, today, I can not seem to find the right words. I just feel like I have not arrived anywhere really. Maybe that is normal, maybe it isn't. My glass half-full attitude tells me that If I ever arrived ,I would stop growing and changing and evolving into the woman I am still becoming. The aim is not arrival. but the in between. which can be fuzzy and unclear and I am not the best in this place. But, I'm positive, it's the most important. I'm trying to adjust to the new challenges.

I apologize for my ramblings. I know that I really do have so much to be thankful for! Reliving one year ago is good for me, even the pain and the brokenness, because without those things, we wouldn't have truly recognized the significance of the joy that was also experienced.  XOXO Kristin



Friday, April 6, 2012

As Real as it Gets...


A year to remember…

I know, it is a bit early, to reflect on actual 365 days since our lives forever changed on April 29, 2011. Looking at my upcoming month on my calendar, I figured that I better get it done. Mostly because I have been home this entire week on Easter break, which has given me, time to clear my head a little. Plus, we received our first invitation to a cancer survivor’s banquet in the mail today, and that got the emotions flowing.

A few weeks ago, I wrote about life and how it is so much different than the white picket fences that we dreamed about just a few short years ago. It always amazes me that I have so many followers and I thoroughly enjoy the responses that I get from my readers, even when they are negative ones. Truth be known… before I even began this blog, I was not really one to step out of my comfort zone. Most of my friends, have been my friends for 15 or so years, if that tells you anything. But those friends, are where I find comfort. I have always tried to see the good in all people. As a matter of fact, I was talking to my best friend Stephanie last week. We were talking about petty stuff that aggravated us in high school and after all of these years, you learn to move on, you grow up, and you forget about that stuff… because most of the time, it really wasn’t that big of a deal. There is not one person that I can honestly say that I don’t like as a person. When Daniel got sick there were so many kind individuals who showed interest in us- whether it be the kind emails, gift baskets to make us smile, the phone calls, the visitors, the girls who took turns scheduling dinners to make sure that my children were nourished as they were cared for by family members and myself, when I didn’t have the strength or the mindset to even cook a decent meal, or the family members and friends who stepped right in to care for those babies, the monetary donations that are still helping Daniel attain the monthly prescriptions that he has to have to stay healthy, and let’s not forget about all of the prayers from people that we knew and didn’t quite know. But most of all, the kindest gentleman of all… donor number 1107-0217-2. I realized through all of this- that there really are a whole lot of good people in this world, doing great things.

The first few weeks in May 2011 seem so blurry, looking back. However, I distinctly remember that I spent those weeks sorting through all of the daunting ideas, fears, dreams that were being crushed right before my very eyes, and mostly, trying to figure out how I was going to do this. You see, at 28  years of age(at that time), things like this are not supposed to happen. I wasn’t supposed to have to be making these decisions. All that I could think about was what my life was going to look like. I wanted to see 17 years into the picture. I know, 17- what is the significance- right? Well, Mia would be celebrating her high school graduation. Would I be there alone? What about Ashlynn, or Avery? Would I be celebrating prom and college acceptance letters by myself? Or, worse, were they going to have to experience walking down the aisle at their wedding with someone else other than their father, like I did? I was too terrified to even look into the future. But, somehow, my mind kept taking me back to those ideas. I would get so consumed in these thoughts, especially when I was by myself in the shower, or making that long drive to St. Louis by myself, or laying in “our” bed by myself so many lonely nights. I envisioned the thoughts of having to make final decisions or end-of-life care decisions. And I wondered if I could possibly keep going on. It was absolutely gut-wrenching most of the time. Looking back, my life was pretty dark, and I DIDN’T EVEN KNOW IT. When your head is a mess… so is everything else in your life.

I never once looked at any information pertaining to the diagnosis. Partly because I was too scared too, and the other reason is that there are so few people in the world that have the exact condition as Daniel, so there really isn’t much information pertaining to him. Most literature indicates that the prognosis for Daniel is very poor- and that is exactly how it is written in the books- I promise. I still keep in mind that his physician says that there is only about a 30% chance that the cancer will return. I see it like this… It’s better than the 100% pre-transplant. That is the “my glass is half-full” attitude. Anyway, last week, one of my instructors was talking to me about the current lesson as well as the last lesson that we will be covering in class this semester. She stated that we would be covering leukemia and that if at anytime I felt uncomfortable, that I could dismiss myself from the class. She went on to tell me that we would be talking about the grieving process with cancer patients. We had already covered that last semester, but it didn’t coincide with cancer. I thanked her for thinking about me tearfully, trying to get my crap together. I really do think that I am ready to understand the disease process, and I really think that it indicates the amount of healing that has occurred over the last year.

When we got the news that Daniel’s “perfect match” had agreed to give his “healthy” blood to Daniel on a hot July day, I was ecstatic. As soon as we got the news, we also were informed of the transplant date. Don’t get me wrong, this is really exciting news. However, it is also became very realistic to me that there is the potential for major complications to happen- complications that could automatically result in death. So after a year or so of looking at Sheena Faught’s gorgeous photography, a called a scheduled an appointment to have family pictures done. I know that I had a stutter in my voice that day… and I am sure that she had no idea. But my intentions were that if anything were to happen, I wanted one family picture, just one… with all five of us in it. A beautiful picture that would hang on my wall. This was just one of my preparations going into the transplant.

You see, I had a colleague whose brother in-law had a stem cell transplant the same day one year prior to the date of Daniel’s scheduled transplant. They too… had hopes of a miracle. However, in February, he lost his fight with leukemia… and that scared me. Because, he was a young man in his thirties, with a wife and three children… Sound familiar?? You see, the 5th, 6th and 7th floors aren’t the most inspiring places to be. During our stay, I know of at least 3 deaths, and I am sure that there were more that I didn’t know about. They don’t exactly announce those types of situations.

When I think back to the situation, I realize that these thoughts that I had, weren’t about Daniel, they were about me. I had so many questions about life. I questioned why this was happening, was it a coincidence? Was God doing this to me? Was it on purpose? I even questioned at some point whether God even existed. Because if he did, why would he do this to someone. Why would he let this happen to Me? A mother with 3 very young girls? Why? When I began to question God, I had to look deep into my beliefs. I am not a real religious type- but this question gave me the opportunity to ask myself if I believed and why I believed. During these weeks of begging God to make it all better… I did a lot of soul searching. I realized that God is big and he is highly accessible when you need him. I also realized that he is like any parent- he wants his children to find joy in life and lots of good in that thing called life.  I realized, that yes, I do believe, and that my friends, is when things seemed easier for me. Sometimes, people will say that God wanted this for you, or that God had different plans for you. I am not saying that I don’t think that is true, because I firmly believe that he trusted Daniel with cancer. I came across something a while back online about a man named Jon Piper, a man who had prostate cancer. It was called  “Don’t waste your cancer”.  And that, has given me drive. To not waste it.

I soon decided that it was time to move on. I accepted the challenge that was put before me. I know that there where many folks who underestimated my strengths, and that was what determined me to do better, to be better, and while I had no idea how I was going to do it at the time, I knew that failure wasn’t an option.

Fast forward to today- the present. My white picket fence that I talked about- yeah, it’s definitely not white. However, it hasn’t been white for a very long time. I like to say that it’s more like neon orange, with some neon green and pink speckles. However, life is good, very good. Daniel is doing phenomenal- seriously. His own doctor can’t even believe what he is seeing! He is back to work, which makes a world of a difference. He looks healthy. Unbelievable. Life is very different than it was a year ago. I was at the pharmacy getting some of Daniel’s prescriptions filled, and was told that Daniel has the highest monthly bill. In fact, they have never seen such a site. The power of medicine is incredible, but the costs are ridiculous. There are so many day-to-day things that we take for granted. Such as immunizations. Mia is behind on her immunizations, because she would put Daniel at a high risk of getting sick. Eventually, the kid is going to have to get the vaccines… so, this is something that we will have to figure out. Ideally, she would not be able to be around him for 30 days. Of course, this just doesn’t apply to Mia, it applies to Ashlynn and Avery as well. We will figure it out. This is still a learning process. Daniel is doing exactly what he has always done… he is the rock that holds my whole house together, never once regretting anything that has happened or getting angry about the circumstances.

So this year has been an evolution of beauty and strength, but it has shaped me into the person that I am today. I firmly believe that I am much wiser, and definitely more confident than I was a year ago. The incredible pain that I have endured over the past year, also brought many triumphs. I have learned that many people do not ever get to experience the pain that I have felt. Not that I would ever wish cancer on anyone, because I wouldn’t.  During my soul- searching, I found out a whole lot of ugly things about myself. Some things that I wish that I never learned. But cancer has given me strength that I would have never had. I have found that strength and much respect for life, so much sooner than most people my age. It’s kind of like I was offered a short-cut in life. I now, appreciate life so much more.

As far as the blog… it has offered my a place to gather my thoughts. It has been the best therapy for me and I appreciate all of the loyal followers. A lot of times, I am burning the midnight oil just to hit the publish button, but it has been every bit worth it. And, thank you from the very bottom of my heart for following me.

Enjoy your Easter weekend. XOXO Kristin