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

On Accountability...

What makes you accountable? For my classmates that read this… I began writing this earlier this week, before our conversation today- swear!

When I look into the eyes of my sweet girls… I think about the future. The “what ifs” in life. There are several “what ifs” that our possible in our life. I try not to go there. I try not to borrow too much more trouble than I already have.

I have said this numerous times… I want my girls to grow up being respectable individuals. I take pride in the way that I am raising my children, leading them in right ways.

Every morning, when I drop Ashlynn off to catch the school bus, she gets out, I give her a hug and a kiss, wish her a good day, and off she goes. There are days like today, where I am in a hurry, and forget those things. On days like today, she slammed the car door, backpack in hand, and started to walk away, but came back and said, “I love you momma”. Same thing goes for Avery. She never misses a chance to give me a great big Avery hug, when I leave her for the day. Mia isn’t quite big enough, yet.  But girl knows how to love on her momma. I love to LOVE BIG. If my girls love BIG like me…

If I done nothing else right in life, and my family operates like this, then I consider myself a success.

Although I get mad at times, wish that I had “me” time, these three faces are what hold me accountable. No one else. So, that is what keeps me going day-to-day. Some days are better than others, and that is how they will always be. I am trying to figure out how to make everything work, which includes making sacrifices at times. I am okay with that. I guess that it is a part of growing up to an extent.

Maybe you are one of those people who has everything figured out, or maybe, your one of those people who is struggling I find myself somewhere in the middle. I feel like I am moving towards better things. Choosing to live my life happily. I hope that you are too. If not, you are really just “short changing” yourself.

On to other news:

Let see… that rash, the GVHD. Daniel’ s physician wanted to try a shot, twice weekly (It’s an experimental thing). Last week, we were still hoping that the insurance company would agree to pay for it. We were told; they have never seen one that would. That’s great- right? Patiently waiting. We fond out last week, Daniel’s insurance company would agree to pay for it, however, only if it was shipped from their pharmacy. His physician wanted to admit him in the hospital on Friday- that way, he could receive it immediately. Only because it could come from the hospital pharmacy. It is generally administered outpatient. Anyway, it amazes me that the insurance company would be wiling to pay $4,000 a day plus the cost of the shot. By the way, that is the going rate of a hospital room at Barnes- 5^th, 6th, or 7^th floor at the Siteman Cancer Center. Dr. DiPersio decided to allow him to come home for the weekend, increase his steroid, and admit him on Monday. He could receive the needed medication, until the medication arrived at the house on Fyler Street. He then could get it-administered outpatient. As it turns out, the rash was somewhat better on Monday at his check-up, and the medical team agreed to wait until the medication arrived in the mail. The delivery took place today, Daniel received the shot, and hopefully, all will be well soon. Fingers crossed. He also has been battling an eye infection, most likely from the GVHD. He met with the eye dr. this week. There has been a change in the eye drops being administered. Hopefully, these will work. If the GVHD does not begin to clear up, there is an alternative treatment that can be done. Photopheresis. Basically, his blood will be run through a machine, and the GVHD will be taken out, and the blood will be put back in. Think Dialysis. Think hospital stays.

Okay, enough of that. We still have no idea when he will be coming home. We have also found out that the drug that controls the whole Philadelphia chromosome- the drug that costs us $8,000 a month. Daniel will have to be on that the rest of his life. BEFORE YOU FREAK OUT, please know that his insurance covers it; we just have to pay for it out of pocket first and wait on the reimbursement. The doctor’s office is trying to help us with assistance. Folks, that is nearly $96,000 a year just for a 12-month supply of pills. CRAZY!

I hope that each and every one of you has had a good week. XOXO Kristin