Because it's Been Awhile...

I do a whole lot of reflecting- on life itself while I am driving. On my drive home today, I thought back to last year, and where I was at. Planning my New York trip… worrying about whether or not my job was in the Missouri budget…Looking back- to the times that life wasn’t really that hard. Or, so it seemed at the time.

And then, I look back to the real hard parts… even though it is painful at times. I like remembering where my heart was and of course, where it is now. It provides so much insight and encouragement. I repeatedly say this- Cancer has taught me so much about myself. I think about some of the arguments that Daniel and I would get into and how I might say things that I would never dream of saying to anyone else. Hurtful things. Why is it that we often hurt the ones that we love the most? I have realized that the subtle tone or the sharp and passive words that I have used in the past were incredibly hurtful. I would have never spoken to Daniel like that when we first dated. So, why did I do it then, after 5 years of marriage? So after 5 years, 3 children later, did I get too comfortable? Was it too easy? I’m not sure.

I guess that it is a comfort thing. You tend to get too comfortable. I learned through the whole cancer process that we often lose sight of what we are about. In my case it was how to love one another. I am talking about on a daily basis. We came really close to losing each other… as hard as it is to admit. Because of cancer… I have learned that I will not let myself get that comfortable again. EVER. I will only have one husband. This is it. My one and only chance to truly love. When I say truly love- I mean deep, hard and unselfishly love. Why would I waste that chance?

I have never wanted pity or to feel sorry for myself or say..."look at me, my husband had cancer." I hope that has been clear through our story. But, I know one thing…God is good. He did not promise me a husband or Ashlynn, Avery and Mia, or lots of money (which I don’t have), or a whole lot of nice stuff, or that I would always be healthy and not experience pain. Instead, He said He would love me and never leave me. Once I realized that, things seemed to look up. I may not think that and feel that all the time but I know in my heart that it’s true. He allowed cancer to Daniel, at 29 years old, married, and with three very young children. In the midst of cancer He carried us through with a perfect genetically matched donor, family, friends, strangers, meals, babysitters, money, a cleaning lady, a house, cards, gift baskets that put smiles on our faces, emails, texts, and a whole bunch of people praying. He never left us. Not even for a second. He trusted Daniel with cancer. He took care of us! I often think that our story is not that unique or special. People get cancer all of the time. People live and some people die. I often find myself feeling guilty that our story of cancer was maybe not as tough as other people's.

While Daniel was in the hospital, I met the mother of a sweet young girl who had a stem-cell transplant about the same time as Daniel was diagnosed. Her mother and I shared our stories, and talked about our fears. Since her diagnosis, her cancer has come back twice and she has really never been out of the hospital. Currently, she is fighting a horrible infection and is becoming increasingly frustrated in her fight with this horrible disease. I constantly think about her and the other people like Daniel. How Daniel is so incredibly healthy compared to most people like him.

Daniel thinks that I am crazy for feeling a bit guilty.

The moral of this blog is that we have changed. Forever we are changed.  I would not trade that for the world. While my heart seems new, I am still INCREDIBLY broken. Daniel isn’t cured… in fact he is far from it. But, cancer did something big to me, and I am very proud of that.

I know that it has been entirely too long since my last blog, and excuses are not something that I tend to make. I promised myself that when I first began blogging, that I would only do it if I “felt” it. My blogs need to have meaning to them. I also contribute nursing school to the lack of blogs. It was as if I lost my blog edge these last few weeks. The good news is that there might be some light at the end of that tunnel- I only have two more weeks left of one of my classes. I am hoping that I will be able to catch a breath of fresh air at that point.

News of Daniel: Since I last wrote, Daniel had an excellent report from his bone marrow biopsy. The next scheduled biopsy will take place in August. The dryness of his eyes has made him extremely miserable. He had tear duct plugs placed in his eyes today- we are hoping for some relief from those. He also has GVHD again. Do you remember that horrid rash that he had all over his back and torso? Yeah, it has made a comeback. Not horrible yet. As with before, GVHD is not always a bad thing, necessarily. GVHD in small forms is a good thing. It means that the transplant is working. They increased the steroid dosage for a week- with hopes that it will be controlled. Also, his central line was removed today- that is a HUGE thing! He is slowly, becoming more “normal” It is exciting folks!

Please continue to keep Daniel in your prayers… he still has an incredible journey before him. XOXO Kristin

A Reflection...

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding on life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

-       Elizabeth Kubler- Ross

Boy, I am full of quotes these days. My nursing frineds might recognize the author. However, I think that this quote is absolutely beautiful! It is some good stuff!

Defeat, struggle, loss…. I think of April 2011, Daniel, Ashlynn, Avery, and Mia. I think of our entire family, and I think of friends. To me, this all relates to Cancer. I reflect back to May 1^st 2011- how scary the world seemed to me, the unknown world of cancer. It is a spot in my life that I truly never want to go back to- ever.

I continue to look at this quote… and the next thing that pops into my mind is the word struggle. I am very aware of the fact that we all struggle. We all have pain. Sometimes, we are able to experience pain with the people we love, and sometimes, well, we have to do it alone.

So, that got me to thinking.

Am I really that compassionate?

Am I gentle?

And most importantly, do I know how to love deeply?

Since I began nursing school, I have learned that in order to be a successful nurse, you must be able to do all of the above mentioned things.

Reflection… another task that we fellow nursing students do regularly. It is so good to be able to reflect from time to time. It is good for the soul- try it! To mentally allow yourself to “go there”.  To look into your heart. To question yourself.  How you care for others. How you treat others. Who you are. Where you are going. Are you meeting your goals. What has made you. Anything about your present self- YOU!

Maybe you are hurting. Maybe you aren’t.

It is so easy to get engulfed in your own life. We are all so “busy”. Busy this, busy that. But, not matter how busy we are- we have to take care of ourselves. We have to make time for those who are most important in our life.

I have learned throughout this whole process… that I wear many shoes in our family. And, although I do, I am only one person and one person can only do so much. I know that I have said this many times… I fail at many things, on a daily basis. I have learned that I can’t be all things to all people. You wouldn’t want me to be- I promise.

So here it is. I loathe cancer. I really dislike cancer. I wish that I did not have to “deal” with cancer. And, I used to say that I hate cancer. But, the more that I think about it, the more my opinions change. Cancer changed me. It changed my family. What has come of cancer?

Beautiful people. New friendships. Because of grief and much sorrow, changed people. I have changed.

I sometimes wish that things were “normal” for us, for Daniel, for me. They aren’t. I am not sure that they ever will be.

But who we are… who we are in our gut... Beautiful people do not just happen, my friends. I believe that the pain that we have experienced with cancer, has brought us more joy and beauty than anything in the world.

Moving on…

Daniel had a full day of appointments today.

He has been experiencing really dry eyes lately. He met with his eye doctor this morning. They inserted temporary tear duct plugs into his eyes, with the hope that will help. If it does, then he will get permanent one placed in a few weeks. This has become pretty bothersome to him.

He met with his Nurse Practitioner. She lowered his steroid down to 10 mg. daily. He will probably stay at this level for a pretty long time. He was at 80- post transplant. Everything looks really good. He had a bone marrow biopsy today. Results should be in by Monday. Prayers for a cancer-free report would be appreciated. All signs seem to point towards it being a good report. However, prayers are always helpful. If everything comes back good, he will be getting his central line removed. This is a HUGE step! It too… is a little annoying for him. It has to be covered every time he takes a shower, he can’t take baths… it just gets in the way. Another good thing… he will not have to have another bone marrow biopsy for 6 months, unless they seem to think that there may be something going on. We wont think about that- though.

May you all have a blessed week! XOXO Kristin

A Part of the Plan

“If you want something you’ve never had before, you’ve got to do something you’ve never done before.”

-       Diana Reed

I saw this quote, somewhere within the last few days, and I decided to hold on to it. Thinking that I may need it for something.

It was back to regular scheduled programming this week as I packed up my bags, headed out the door on Tuesday, and never looked back. In all honesty- that is how I truly feel. What a whirlwind of a week. I sometimes joke about wanting to run away with the circus. There were days this week, that it really seemed like a grand opportunity- and there was no joking involved, this time. I know that you have those days too.

With my first semester back at school, I fealt like I was at a really weird place in my life. I wasn’t sure if I was fixing to go off the deep- end, or if I was fixing to truly find joy, for one of the first times in my life.

Joy it was. It had to be.

I see so many things that I have never seen about myself. I have met a few friends- that I promise you- will be lifetime friends. These girls- I met when I was probably, at my worst. The best thing- they stuck by my side- offered me feedback that I truly needed, and have stuck by my side from the very first day. Looking back, I was stuck, afraid, and unsure. I am pretty sure that they are responsible for helping me survive- these girls have helped me learn to breathe again. On a side note, Janette, if you want to run away with the circus... I would definitely go with you!

Since school started, I have begun to learn to have a more fulfilling, meaningful life and marriage. It becomes very hard at times. But, this is what I needed.  I can tell you that I am truly present in the days of my life and my children’s lives. I guess, through all of this (Daniel’s diagnosis), I have learned things about myself- that have hurt me even more. I constantly, am working on those things. Some of those things- hurrying all of the time… from one thing to the next, being divided between work and home life. Changes…

I am becoming better at multi-tasking. - Not hurrying from one thing to the next- just multi-tasking. I have learned that there is something’s- that well; you just need to let go.

But the best lesson of all: I have learned that I have many flaws, and I am not afraid to tell you about them. Amongst those flaws, I know that no matter how bad I mess up- I always have a second chance.

So what is my point? Here it is.  Despite it all, life really is good, and God is good.  Although my life may seem that is constantly under construction for the time being, I am finally seeing the results of his craftsmanship, his work. And, while the final work may not be clear for anyone that passes by, we can see it, and that is all that matters. It is beautiful for us and the 5 members of our family.

What kind of life do you want? How are you going to get it?

Daniel update: Hopefully, the virus is finally exiting Daniel’s system. His symptoms are scarce at this point. Lab work this week revealed that his platelets are raising some, liver tests still on the decrease and his hemoglobin is improving. At his last doctor’s appointment, we learned that it is very normal for some of his levels to never be “normal” and it is perfectly fine. That eases things, a little. He will continue to have weekly lab appointments. The next doctor’s appointment is at the end of the month- it will also be bone marrow biopsy time. So, as you know… it becomes quite stressful. No real news… Daniel has begun to get out with his friends a bit- and that is wonderful. You can definitely tell a difference in his spirits and that makes me very happy.

Enjoy the rest of your weekend! XOXO Kristin

Reality

Typical questions that we ask on a daily basis is- “How are things?” I am pretty sure that somewhere in this blog- I have addressed the awkwardness of this question. As a reminder- I am pretty sure that my true answer that I usually, am very reluctant to give is “How do you really think that things are?” But, I never do. Instead, my old answer was simply- “busy”. And then I realized, that everyone is busy and that was a terrible way to answer the question. Now, I never use the word “busy” as my answer.

Another frequent question that I am asked is: “How do you do it all?” And my answer is- I don’t really do it all.  Truthfully. I don’t. It may seem like it- but I don’t. There are a whole lot of things that regretfully, I don’t do.

Sometimes, I feel like I often do what I would call “paint a prettier picture”, than how my life really is.  Typically, I am a very private person- finding it hard to truly open up to most people. However, from day one of this blog- I decided that I would lay it all out- to the very best of my ability. Telling you absolutely everything that was going on- be it good or bad. Perhaps, it would be an open book.

This blog for me has allowed me to talk about my life- a whole lot. Whether I talk about the 4 other folks that I share a house with.  I speak about my friends and how wonderful they are – because, they are very much worth bragging about. I talk about school- and the excitement and opportunities that it has brought to my life. I talk about my personal feelings. About my beliefs. And, most importantly, I talk about CANCER- and the huge changes that it has brought to our lives. Most importantly, I feel that I genuinely try to bring happiness, with a big ole, capitol H to my blog.

When I started this blog- my intentions were to keep everyone up to date with Daniel and his disease. Then, it turned into something that allowed me to cope- to heal.  This blog has helped me to realize the reasons to live, to do better, to be, and exactly what those reasons were. It has worked. I see things, and think things that I have never seen and thought before. All of this would not be possible if I did not have the strong following from my followers- you guys. The friendly little emails that I get, the little words of encouragement- they have helped tremendously. I save every single one of them- promise.  Which reminds me- I am very close to 50,000 hits! WOW!

My life has completely changed.

A few weeks ago, I went back and read every single blog entry from the beginning. For one, I am very glad that I decided to chronicle our journey- because there was so much that I actually had forgotten. But, the thing that caught my eye is that I make things seem like they are as perfect as they can be. This is where I realized, that I needed to straighten some things out.

First of all, my life is far from being perfect. I don’t do it all. Sure, I have been blessed in ways that many folks haven’t been. I have a pretty fantastic life. I have 3 very healthy children, I reside in a home, that my husband and I built a few years ago, and I am currently, pursuing another degree with the option to not be employed. Many people never get a chance to have any of the above-mentioned things. I simply, am very fortunate, and there is not a day goes by that I do not appreciate it.

I focus on the good, the bad. The happy the unhappy- because- all of those things are components of life itself. If I only focus often what is good- at this time, then I am really doing a disservice to myself. It very easy to “paint that picture”.  Choosing to “forget” the bad stuff.  I just want to show you a glimpse of my reality.

I don’t want to only focus on the good moments- but focus on the bad ones too.  Possibly thinking that I have no suffering. Thinking that there are not any moments where my children truly get on my nerves. Or maybe, thinking that I am not a complete jerk at times. I have bad days, and I have days that I call failures. Everyone does.

This is me: I have a fantastic life. Since Daniel was diagnosed, our marriage has suffered many tribulations- that I believe, will make our relationship stronger in the end. There are days, when I don’t get out of my yoga pants. Some days, I do not even have the energy to shower. I currently weigh less than I did pre-pregnancy, and desperately want a tummy tuck. I fail at things.  I have a whole lot of suffering. I take anxiety medicine- because, believe it or not- I have a whole lot of anxiety, in which I create myself. I think a whole lot- and most of the time- over analyze situations. I worry tremendously about my future and the future of my children. I wish that my house would stay clean, because I am a much better person when it is clean. I have a really hard time functioning in disorganization. I feel lonely a lot. I don’t have a whole lot of friends, locally. Which is very hard at times. This winter break- I have learned that I wish that I had paid attention in my previous studies at SEMO. Especially, government.  I voted for Obama and while some would cringe at the thought- I am sometimes, very glad I did so. The costs that Daniel has incurred would have succeeded the lifetime insured value had Obama not have passed the health insurance changes. I am forever grateful for that. Daniel has been given a chance to see his children possibly grow up. While, I just touched on a whole lot of negatives- I have far more positives. I promise.

I hope that you are not discouraged with me. I am desperately trying to heal- and it is a process, I know.

So, I hope that you continue to follow our journey. And if you struggle like me, I hope that you realize, that you are not alone. You are never alone.

As most of yall know, Daniel was hospitalized last week for a few days. This time, it was more of a precautionary thing. Daniel had a doctor’s appointment last Wednesday. He was still dealing with what they thought was the BK Virus. His nurse practitioner thought that it would be in his best interest to be evaluated and possibly undergo bladder irrigation. So, off to the cancer center he went. All tests pretty much indicated that there was some blood in his bladder, but since Daniel was able to pass the clots on his own, there was no need to catheterize him and perform the bladder irrigation. So, he was sent home on Friday afternoon. He has a follow-up appointment tomorrow. Things are better for him. He is doing so much better. 

For now, I am closing- with one last thought. My thoughts into 2012 are to JUST BE.

XOXO Kristin

I have been thinking about turning all of my blog posts into a book. Maybe, the girls' may want to look back on 2011, maybe they won't.

I don't want to forget the day-to-day. All of the interesting things that have happened this year- in our life. The Joy. The regrets. All of it. The daily tidbits- that in turn, make up our life.

So this was our 2011:

                        ( 2011: The year that Ashlynn graduated Kindergarten)

                          (2011: the year that miracles truly did happen)

                          (2011: the year that Mia Love turned ONE)

   (2011: the year I found and NYC and discovered that I truly love that place)

                                (2011: the year my diva Avery turned 4)

And, I couldn't leave this out: 2011 was the year that I decided to chase my dreams with nursing school. The year Daniel cheered me on.

I know that most people declare their New Year's resolutions on this day, or maybe before. I'm not going the masses this year. I  have decided to take a more kinder, gentler approach to the year 2012.  I'm only partaking in the deadlines that come from school work. No timelines for me. Lessening of the pressure of life itself. But, promises of the life attempted.

Promises to be me. Promises to just BE. Promises to be a good Mama to those three beautiful girls. Promises to not worry so much about the future, but to focus on the very moments before my eyes.

Promises to be good to my family.

Promises to be a better for friend. Promises to be the friends that are friends to me. Because, this year... I have been a terrible friend- receiving and not giving, like those girls, that I call friends.

And, finally... I have decide that I am going to trust in God's plan- no matter where that takes me.

So, in 2012, I plan to look forwards, and not backwards... knowing that it is completely out of my control. However, I plan to accept it as it comes.

These are the things that I promise to myself.

And I am incredibly thankful for 2011. Knowing that much of it was out of my control, and while it seemed so horrible at times- many times. I am thankful that I had it... to ground me... and to humble me.

So instead of the typical New Year's resolutions... I look forward to much progress.

I know that you are much interested in Daniel's progress. Here's an update. Daniel's laboratory values are continuing to improve. Which is better news around this house. His platelets on Wednesday were a whopping 76! The low end of the "normal" spectrum is 130. He is getting there. With a lowered dose of immunosuppressants comes other problems. He is now battling a BK Virus. It is a horrible virus involving the urinary system. You can google it if you choose. Anyway, things will be much better for him when this virus makes it's way through his system. We have been told that it could take a month or so. By now, we should be used to this. However, we aren't. He has not had to take any doses of insulin for a few weeks now. So, it is my assumption, that the diabetes is no longer present. He saw an eye specialist (the 2nd) one. This eye specialist treats many bone marrow transplant folks- and he is wonderful. Daniel is taking a new regimen of eye drops, and supplements to help with the GVHD in his eyes. It is the doctor's hopes that the chronic dry eyes will eventually resolve themselves with the proper treatment. He did mention to us that Daniel's case is not the absolute worst that he has seen. So for now... that is where we stand.

I wish each and everyone of you a splendid 2012! XO Kristin

From Our House to Yours...

(Photograph by Sheena at Esprit Jolie Photography)

I am a little late on the Christmas train this year. I literally, just picked up my Christmas pictures on Tuesday. Addressed them, and off in the mail they went on Wednesday. Amongst that craziness, who was the silly girl that decided to cram 2 classes into Winter Break? ME! I am still contemplating dropping one of them and taking it in the Spring. I think that I am way over my head this time!

With everything that this year has brought...

I am trying...

And I am trying very hard to make sure my children view Christmas as it should be – a joyful celebration of Christ and the feeling of love of family and friends all around.

... To keep with traditions.

... To make it magical.

And I hope that you do to!

...To move forward and not let the tears fall. Because, lately, they fall at the drop of the hat. I am not sure why, but they do. Probably, because there isn't a day that goes by, that I am not reminded of Cancer.

...To be a role model to my children

...To be positive, because my children and husband deserve nothing less.

And neither do I.

(Photograph by Sheena at Esprit Jolie Photography)

So, from our family to yours, I wish you a very Merry Christmas. XOXO Kristin

Why Hello Winter Break

Browsing through my pictures,

Uploading them from my camera,

1,476 of them to be exact.

All from April until now,

4x6 reminders of everything that I am grateful for.

Easter, the circus, New York, summer, birthdays, cancer…

It’s in the pictures, the memories, that I am reminded of the many blessings that occur.

Understanding… that I count those blessings daily.

While on a very short break from all of the craziness of my school schedule, this is what I envision:

A house full of family. Friends… laughing at each other. Enjoying each and every moment of it

Chilling.

Printing 1, 476 pictures and then some…

An elf that gets moved nightly. I do not know how much longer my children will believe that the elf- “Peter”, hangs out in the tree, because that is where he gets his best view, and that he really likes it there.

My favorite new place in my house- the family room upstairs. That clearly, doesn’t get used enough, but will now.

Bags dropped at the door, shoes everywhere, a dumped diaper bag emptied in the floor… because there will be less worry about a “clean house”. More gathering, enjoying.

A kitchen table that will be gathered around. Prayed around.

My hope for this holiday season: to bond. To share. To love.

And, yes, I am truly blessed!

Here is a slight update on Daniel. We made the bi-weekly appointment to St. Louis, first with the lab, and then with the Nurse Practitioner. Things seem to be going great. Daniel’s platelet and hematocrit levels were still not rising in the direction that they should be, so Dr. DiPersio decided that lowering his immunosuppressant would possibly solve some these issues. Lab values indicated that the change in the mg was in fact, helping. However, with the lower immunosuppressant, he is at an increased risk of developing GVHD. With that being said, he has an increased dryness issue in his left eye. This is an issue that he has been dealing with since transplant and most likely is the GVHD. We are visiting with another eye specialist next Monday. If the physician cannot get this under better control, the immunosuppressant will have to be increased as well as the steroids. The steroids are a big contribution to the increased muscle deterioration that Daniel has had. He is very weak, but getting stronger each day. It seems that we will be taking quite a few steps backwards, should this occur. If all seems to check out good on Monday, Daniel will graduate to tri-weekly appointments.

Enjoy your week folks! XOXO Kristin