Let the Madness Begin

This little blog started seven months ago.

With no anticipation that it would last this long.

But you followed in the beginning to find out what exactly was going on with Daniel. Now, I relate more of my writing to family stuff. Never forgetting to add in a little bit of information about Daniel. And you still follow.

I am always amazed at the number of times that this blog has been looked at. I am amazed at the number of people who say “I follow your story on Facebook, or your blog”. I am amazed at the number of people who follow me around the world- yes, around the world. I have friends in more countries than I ever dreamed of.

I may not know them personally… but they know me, they know us, and that is astounding.

It amazes me that some people tell me that I have reached them. Encouraged them. People that tell me that the world really isn’t that big. And at some points in our life we will experience joy and we will experience horrible things. But that you aren’t alone- ever. EVER.

I have put it all out there. My stumbling’s, the many imperfections that I have.

I know that I do a lot of things right, and for that, I am very proud.

Honestly, I have always been a private person. One that really never opened up.  This blog has offered an opportunity for me to talk about my feelings. It is the voice behind me. There are many times where my mouth would open and nothing would come out- simply because I just couldn’t make it happen.

Thank you for being there. For listening. Even when my words are boring.. Thank you for checking in.

Thank you for cheering on. Because at times… it would have been very easy to give up. I’m not a quitter, but there were instances where running from my problems really would have been the easiest thing to do.

Thank you for pushing me… telling me that YES- I could do it.  I am forever grateful of the friends and followers that I have. I am truly blessed and I know it.

After all, this IS about life attempted.

Life has a way, doesn’t it?

I know that I have not blogged in some time. Bare with me friends. I am winding down a very active semester. Cheers to that. Let the holiday madness begin. This is the time of the year where my OCD personality kicks in.  We kick the madness off with Christmas pictures tomorrow afternoon. Every year, I strive to create the perfect Christmas card. This year will be no different than any other.

No real new with Daniel. His bone marrow biopsy came back disease-free. He was able to return to his regimen of the drug that controls the Philadelphia chromosome. His platelets are still low. It is anticipated that there will be an increase in that number in the weeks following. He is controlling the diabetes issue with insulin. Since his immunosupressants are continually being lowered, he is requiring less insulin daily. It is funny. He graduated to bi-weekly appointments in St. Louis. Things seem to be working for him.

Looking forward to a few days off next week.  May you all have a blessed week and weekend. XOXO Kristin

To Be Thankful

While sharing lunch with some fellow classmates today, there was discussion about my sweet little blog. I am amazed daily at the number of folks who say, “ I wait weekly to see a new blog post”, or “I love reading your blog”. It makes my heart melt just thinking about it. I thoroughly enjoy writing (about stuff that I want to), and really, I only started this blog to keep folks in tune with Daniel. Several folks have mentioned to me that I should print my blogs off. Maybe some day I will do that. The truth is, once I hit the “post” button, I never read the entries again. I will someday, I promise. 

 So, the one thing that I have vowed to myself… Is that I would be completely truthful.

This is my reality. This is our reality. And, as hard as it seems at times… it is the truth. 

With that being said. I have had some extra time to visit Facebook tonight. And, I can’t help but notice how many of my fellow friends are posting about things that they are “Thankful” for. I wish that I could devote a few minutes to every single day to post something that I am thankful for- but, right now, it simply isn’t possible. So, here are a few of the things that I am thankful for, in no particular order:

- The year 2011: it has truly grounded me. Humbled me

- My husband: the one and only person who has always believed in me

- My beautiful girls: for giving me a reason to get out of bed daily

- Family

- Being a Momma: I am learning to not look into the future, but to enjoy the moments before me

- My friends: who truly “get” me. Who knew that a few years down the road, these “friends” would help me cope, when I couldn’t cope on my own. These friends have stuck by my side, when my world had been completely rocked.

- New friends: I have some “newly-found” friends who have offered a whole new meaning to life. These friendships… have been gained in the last few months. And for the record, they will be forever be my friends! 

And finally,

- Being able to trust in God’s plan

If I have learned one thing this year, it is this: Find something that defines you. What defines me? Cancer. While I would never say that I absolutely love cancer- because I don’t. As a matter of fact… I really dislike it. Cancer defines me. I have truly grasped an actual realization into my life because of it. It has given me the determination to do so many things. Determination that I have never once had. I hope that one-day, something else defines me. I encourage you to find something that defines you.

On to other things. Yesterday, Daniel had an exhausting day of appointments. Nothing new. The Nurse Practitioner did state mention to him that she thought there was no reason that his bone marrow biopsy would come back “clean”, which essentially means cancer free. On another note, his blood glucose was extremely high- to the point of; I do not know how he was functioning high. He was diagnosed with Steroid Induced Diabetes. As of right now, he is insulin dependent. However, we are trying to help control this with dietary modifications. It is very likely that when he discontinues the steroids, the blood glucose levels will level out. As we learn more in the next week, I will let you faithful readers know of the results and plans of action. 

Until then, enjoy the rest of the week and weekend. Take advantage of Daylight Savings Time on Saturday. I plan on it! XOXO Kristin

Cheers to November

Let’s get one thing out of the way- please forgive me for not blogging last week. And please forgive me when I say that I am not sure that I want to continue blogging. I sometimes feel like I have nothing to say. Sometimes, I have a hard time starting. But, when it comes down to it, I am not sure I want to end it. So here it goes…

Last week was pretty intense. Daniel was home the entire week for the first time in a long time. Which was nice- extremely nice. Plus, it just so happened that he celebrated a very special birthday on Thursday- his 30^th! Which only means one thing- a surprise party! School added to the mix-, which always tends to make for an interesting week.

Speaking of school… can you believe that I enrolled in my 2^nd semester of classes today? Whew… this semester seriously flew by. You see, I look at nursing school this way: 1 of 4 semesters is almost complete! I finish up my last skills lab of the semester on Thursday. It is kind of a bittersweet thing. More sweet than bitter! I am sure that my fellow classmates can slightly agree.

As I have mentioned before, Halloween, the fall… these are just a few of my favorite things. This year, I sort of dreaded Halloween. Mainly, because I thought that it would be the girls and I. Four of us, not five, because I was sure that Daniel would still be in St. Louis. As it turned out, he was home. Ashlynn was a socialite, Avery not far behind, and Mia, a little heavy on top, clumsy and not wanting to listen to me at all- that is how she rolls. Our Halloween was cut short, due to the quickness that the cold temperatures set in, and the gathering of folks that Daniel most definitely, had no reason to be around (he is still on the immunosuppressant’s). Being in crowds make me nervous. But, what can you do? I can’t keep him in shelter all of the time. It wouldn’t be good for his spirits!

Tomorrow, Daniel heads to St. Louis for some tests. He will be getting labs done,  seeing the Nurse Practitioner, having a pint of blood drawn off of him, and having a bone marrow biopsy… So please keep him in your thoughts as you go about your day. He follows up with Dr. DiPersio on Monday. By then, we should know some preliminary results of the biopsy- not all of them, but some. I am more nervous about this biopsy than I have been about any other. I have no real reason to be. My stomach turns, my shoulders tighten. STAY TUNED. Next week, we will begin to plot our next moves.

We hope. We pray.

Thank you. Each and every one of you.. XOXO Kristin

Fall Break Delivered

Some times I get caught up with people who’s kids are perfectly clean, houses that are immaculate, marriages that are perfect or picture perfect. I wonder why I don’t have that. Or more importantly, that there must be something wrong with me and that is the reason that I don’t have all of that. Please tell me that you do the same thing.

I could lie and tell you that all of those above things- are characteristics of my life- but they aren’t. The truth is, it isn’t the norm for most people.

Today, my cleaning lady came. My house was such a disaster, which, I would normally be too embarrassed to admit. But, I am learning, learning to let the little stuff, like having an immaculate house, go. I promise you, my house is clean- just not kept.

Time… I try not to waste it.

I am quickly learning to be “okay” with it. I except that there are parts of my life, that need a major overhaul. Right now, isn’t the right time. But when the time is right, it will happen. I will get that fresh coat of paint.

Last week, I decided to take a break. It was Fall break with my school schedule. A much needed break. A break from blogging. Nothing permanent or drastic- just a break. It was so fantastic!

I spent some much needed time with my children and husband. School work consumed me a little bit, but I allowed some free time to spend with my children, which included a trip to the zoo. Beautiful, it was. These little girls are growing so fast!

Still waiting for the day when Daniel gets to come home. The rash is much better. His platelets, still not raising the rate that they should. You may be questioning the concern for this. Here it goes: the medical team is not concerned in a huge amount, however, that treatment (the low-dose chemo therapy treatment for the next year, the best treatment for him), can not happen if his platelets do not rise. However, the team believes that the low number is due to the anti-rejection med, the steroids and the treatment for the GVHD rash. All are possible reasons. Other than that, things seem to be going real good. That is what they say!

I met some really fabulous people while Daniel was in the hospital, many of which I have formed friendships with. A very young lady has really had a tough way to go. She was diagnosed over a year ago, had a stem cell transplant around the time of Daniel’s diagnosis, and the cancer returned late summer. She under went a “mini-transplant” after Daniel’s transplant. She has had a rocky road since, but is out of the hospital. Guess what? She sent a letter to her donor and received a letter back and plans on meeting her real soon. I am so excited for her. I can’t wait until it is our turn, to meet Daniel’s donor.

Thank you for believing in me. For offering me the courage that I didn’t have. You make a difference to me. Thank you! XOXO Kristin