Speechless!

If you aren't sure if you believe in the power of prayer, you've got to check this out. It's the blog of sweet Lucy, the 5 year old I have asked you to pray for many times. Just 2 Mondays ago her parents were preparing for her funeral, as she was very sick and had been told her cancer had returned and she wasn't expected to live long. I encourage you to go to the blog and see the transformation Lucy has made, after people from all over the globe started praying and pleading with God on her behalf. It truly gives me chills! Miracles do still happen today and this is one of them. Http://erikandkatekrull.blogspot.com

You know it's a good day when...

1.you see a wonderful picture of Lucy awake and smiling. 2.anderson gets a great checkup at his 2 year visit. 3. You feel so good you convince your husband to let you push mow the front yard. Yep. Add that in with a night spent outside with your family and then some family time eating popcorn and watching Dog the Bounty Hunter... I'd call it a great day.

Chemotherapy

As you probably remember from another post, my chemotherapy schedule is in 2 phases.  Phase 1 consisted of Adriamycin (a.k.a. Red Devil) and Cytoxan.  These were given every other week for 8 weeks (4 total treatments).  Then phase 2 is Taxol given every week for 12 weeks.  This past Friday I began Phase 2!!!  Yahoo!  If I had to think of one word to describe Phase 1 it would be HORRIFIC!  That combination of medicines really kicks you and gets you down.  I just hope it did as much damage to the cancer cells as it did to my healthy cells.  Whew.  Each treatment made me very sick for 3-4 days.  I also had to get a shot of Neulasta the day after chemo to help increase my white blood cell count.  This shot made me feel like I had the flu x 100!  I ached and hurt all over.  I hurt just to be touched- it was difficult to put on makeup and even lying down in bed hurt.  Whoever came up with 4 treatments of that combination is a genius because I can honestly say that if I knew I had to do more than 4, I'm not sure I could have done it.  Just when I started to feel "normal' again, it was time for the next treatment.   I did still work during the treatments except for treatment days and the day after, then I recovered all weekend and went back to work on Monday.  It wasn't always easy, but being at work made me feel like I had a purpose and kept me busy so that I didn't just sit around letting my mind wander (which I have found this summer is NOT a good thing).  But let me say, I have never been so thankful to have completed something in my life!

So, how is Phase 2?  Well, I've been both looking forward to and dreading phase 2 all at the same time.  I had read and had heard from others that phase 2 is not near as bad as phase 1, symptomatically speaking.  However, I also knew my body and knew that "I" tend to not have the same experience as others.  "Worst case scenario" tends to somehow end up being my Plan A, and I have gotten pretty used to preparing for Plan B.  So I had no idea whether or not my body would have the same experiences as the others. 

I hate to speak too soon or to jinx anything, but the first treatment of phase 2 was WONDERFUL! Well, as wonderful as chemotheraphy can be at least.  I did not have any sickness at all.  I had a full appetite, had great energy, and felt great.  The only side effects were from the huge dose of steroids, as well as some joint pain/body aches.  But this girl is not complaining about any of those!  I can handle that- as long as I am not sick!

So right now I don't dread the next 11 weeks nearly as bad as I did just a few weeks ago.  I know 11 weeks sound like a long time, but I will have my last treatment the 3rd week of school- and I know how quickly July will fly by and school will be here before I know it.  When I first started treatment, a great friend of mine made a paper link chain and hung it in my office.  There were 16 links total- one for each treatment.  Each time I finish a treatment, a link gets torn off.  It's like a visual countdown for me and I LOVE watching that chain get smaller and smaller. 

So for the time being, my spirits are up and I am determined to fight and kick this thing in the butt!  All of those thoughts of being finished and wanting to stop the chemo are now gone.  I have a new motto to live by during this journey.  I heard it on Good Morning America on Monday when Robin Roberts announced about her latest diagnosis.   She said that she has to "Focus on the FIGHT, not the FRIGHT."  Wow!  Good stuff.  So I have decided to use that as my daily motto.  I will focus on fighting and kicking this thing in the butt- I will not allow myself to focus on the fears of having stage 3 cancer.  I am a FIGHTER and I must stay focused on my goal! 

One of Many Firsts

There are times in this journey that something happens that makes me feel horrible.  I mean, really horrible.  Things like the number of people who continue to take the time to send cards of encouragement- something I always have good intentions of doing when I know someone is having a hard time or on a journey of their own- but never quite get around to doing.  Things like people who go out of their way to find something to do to help make things a little easier, because they knew we wouldn't ask.  Why do those types of things make me feel horrible?  Because it makes me realize how selfish I've been in the past and how I have lived in a world engulfed by my own little "bubble" where the only things that mattered were things that pertained to me or to my family or close friends. 

A few weeks ago, I had the honor to attend a local event that made me have "one of those moments".  You see, it was not the first time for the event.  No, it had taken place for several years.  It wasn't that I had never heard of the event- nope.  I had heard of others who had participated.  But, I guess because I never had a direct tie to the cause for the event, I never paid much attention.  In fact, I paid so little attention that I had no idea just how the event would impact my life.   I was not emotionally prepared for such an event. 

What was it?  It was our local Relay For Life.  Wow.  How had I missed this all these years?  Oh yea, that's right.  I didn't have cancer and I didn't have any family members with cancer, so why bother?  AGH!  How selfish of me!  And to be completely honest, I wouldn't have gone this year if it hadn't been for our local Pediatric Clinic (where my mother-in-law works) asking me to be there because their team was walking in honor of another employee and myself. "Sure, I'll come for a little while," is what I thought.  I had no idea how wonderful that night was going to be emotionally to help me in this journey. 

If you've never been to a Relay for Life event, make a promise right now to find one to be a part of, if not this year then next.  Jamie and I took the kids, my parents also came, along with my sister and her family, and my mother-in-law and sisters-in-law.  We all had an absolute blast! There were so many different activities going on besides just walking around the track, but the walking around the track is probably what had the biggest impact on me and my journey. 

First of all, anyone who is currently battling cancer or is already a survivor all wears the same shirts.  So everywhere you look, you can see many others who understand your journey.  They know best, because they've either been there/done that, or they are doing it right now.  This year's shirts were purple and across the back of the shirt it says "SURVIVOR".  If I'm being completely honest I felt weird wearing it because right now I don't feel like a survivor, maybe mine should have said "FIGHTER".  Anywho...I was reminded that you become a survivor the minute you are diagnosed.  So I wore my purple shirt with pride.  To begin the event, the first lap is walked by everyone in the purple shirts.  The rest of the crowd gathers around the track to cheer on the survivors.  And as we walked, I read the names of so many written on the bags that lined the track.  And then to see 4 bags with my own name on them!  Wow.  Powerful stuff.  I did my best to hold it together, even though I'm not very good at that kind of thing.  But then, for the 2nd lap, they had all of the caregivers join us to walk a lap.  So Jamie and my mom joined me (along with Karlie, who didn't want to miss any action) and we walked the second lap.  I held it together pretty well, until the DJ started playing the Martina McBride song that tells my story almost to a tee, except that I'm only 32.  At that point, I lost it.  And like he always does, Jamie simply put his arm around me.  No words were needed.  With that one movement I knew it was okay.  It was okay to cry, it was okay to be scared, it was okay to have doubts and fears- because no matter what, he will love me through it and never leave my side. 

After those 2 laps we spent time visiting with many people and participating in the activities they had- not to mention all the fabulous food available.   We heard of the Luminairia Ceremony that would take place at 9pm and I was not about to leave before that event.  It was so powerful!  All of the bags (luminaria) were lit to line the track. 

Then all of the lights around the stadium were shut off, and many people had purchased glow sticks for the ceremony.  So in the complete darkness, other than the candles in the bags, it was announced..."If you are a survivor, please break your glow stick now."  And all around you saw lights begin to glow.  Next "If you are a caregiver or family member, please break your glow stick now."  And more lights lit up.  And finally, "If you know someone affected by cancer and you support them on their journey, please break your glowstick now."  Just to see all of the glowing lights around the stadium was powerful.  To know that even though at times I feel all alone and like no one truly understands what this journey is like, there are always others out there who have been through or are going through the same thing.  Then, they began to read the names of those affected by cancer.  Some names were in memory of, some in honor of, and others in support of...This was probably one of the hardest parts of the night.  Yes I knew they were going to read my name, but there's something about hearing your very own name read in that context...almost a type of validity, that yes, I indeed have joined a group of people who I never intended to join- but for that matter, neither did they.  I have joined a group where the support is tremendous, but not one person in the group wanted to become a part of that group, and I really wonder if that feeling ever changes.  Somehow I doubt it.  But I think the hardest part about being a part of this group is the unknown.  There were a lot more names of those who had lost their battle, than there were for the survivors and current fighters.  When you are in the group, that's something you notice.  When people join this group, some survive and some don't  That's just fact.  And I truly believe that each of them began their membership ready to FIGHT!  But sometimes no matter how hard the fight, the cancer wins.  And this event is to "Celebrate, Remember, and Fight Back!"  So we celebrated those who have won the battle, remembered those who hadn't, and pledged to Fight Back alongside someone we know/love. 

Jamie and I have promised to make this an annual event for our family from now on.  Not just because I now have cancer, but because we know how wonderful of an event this is.  I am embarrassed by the fact that I have never been until now.  This event is one way that I plan to "Pay it Forward" in the future.  It is an event that next year, I can't wait to wear the shirt that says "SURVIVOR" and actually feel like one!  And maybe next year, there will be someone there that has just joined our club, someone who needs some support and encouragement from those who have walked their shoes, from someone who understands the journey they are walking,  just like I did this year.  And I pray that I will no longer just have good intentions of ministering to and encouraging others, but actually be able to follow through and make a difference.  Please consider finding your nearest Relay for Life event and getting involved! 

A HUGE thank you to the Columbia Pediatric Clinic doctors/nurses/staff for a wonderful night.  Thank you for letting me be a part of your team.  Thank you for your love and support!  That is a night that I will never ever forget!

Where do I even start?

I've been really having a hard time getting motivated to write lately.  I'm not sure what it is exactly, but I just can't seem to sit down and write on the blog.  Not that nothing has been happening, in fact, it could be quite the opposite- so much has happened that I don't know where to start.  I mean there was Kinsley's birthday, Karlie's preschool graduation,  Jamie's and my 10 year anniversary, Anderson's birthday, the Relay for Life, sweet Lucy, or anything to do with cancer and the journey we are on..but for some reason I could not bring myself to sit down at the computer and pick something to write about- I mean, can a birthday post be smushed in between posts about chemotherapy?   I don't' know.  Maybe I need more than one blog.  One for family stuff, one for Anderson's story, and one for cancer... Well if I keep those updated as much as I do haven't done this one lately it would be a waste of time.  Oh well.  Maybe I can find my motivation.  Quit worrying about WHAT to write and just write!  So, I'm going to just start somewhere and go with it!  (Now that I got that off my chest...)  So my goal is to do one post every day for the next 2 weeks.  It may be a hodgepodge of topics, but if I ever get around to getting the blog printed into a hard copy (like I've been meaning to do) I will have most of the topics covered that I have missed. 

So,  let's start with birthdays....
Kinsley turned 8 this past month.  She is such a caring and nurturing little girl.  She is maturing every day, and she is so helpful with Anderson.  She has handled all of the changes in our family with such grace.  She wants to help however she can whether it be with Anderson, or helping me do something, or getting something for me, or helping clean up the kitchen after supper.  We don't want to put too much on her, but we have allowed her to pick up a few more responsibilities around the house and she has done great!  She is a natural worrier, so Jamie and I try to protect her from the really yucky sides of having a mom with cancer.  While she doesn't fully understand what cancer is, she does know it's not a good thing.  But as long as she sees me feeling well and being able to do the things we've always done, she is okay with it.  She is even getting used to seeing my bald head when we are at home.  (She still refuses to let me go in public like that, though, which is okay with me.)  She asks a lot of questions about when I have to have that horrible medicine again or when will I be finished with that medicine, but once I answer her questions, she seems content and goes on with whatever it was she was doing. 

She will be starting 3rd grade this year, which moves her up into the same school that I work.  I am excited to have her in the same building, I just hope she continues to thrive like she has the past 3 years.  You know how some kids are, they are fine when their parents aren't around, but then they melt and act like they can't do anything when one of them show up...well, in the past that's how Kinsley has been, but I'm hoping she will continue to be just as independent this year as in the past.  I can't believe how fast she is growing up.  It really seems just like yesterday I walked her in for her first day of Kindergarten and cried like a baby (both of us).  I look forward to watching her grow.  She has such a big heart.  I hope she stays that way.  She told me she wants at least 5 kids when she grows up, but she'll keep having babies until she gets a boy as sweet as Anderson.  (Ha!  We'll see how long that lasts!) 

Speaking of Anderson...
This little guy celebrated his 2nd birthday on June 1st.  Wow!  What a long way he has come in 2 years.  We have some developmental checkups coming in the next 2 weeks, and I'm pretty sure he's going to come out with flying colors.  He is doing so great right now!  His shunt seems to be working correctly (fingers crossed), he has met his physical milestones up to this point, his cognitive skills are still advanced, and he's just a little behind with his speech.  He's talking, but not putting words together yet as much as he should be.  We may do a little speech therapy, or we may just give him time.  We'll see what the doctors think at his visits.  I can honestly tell you that 2 years ago we had no idea that at this point we would be able to say that he is doing so well.  We had no idea what to expect.  And that is really no different than today- we don't know what to expect for the next year or longer- we don't know what his life will be like.  We pray that he continues to do as well as he has so far.  We pray that we continue to give him whatever he needs to be successful, and we pray God will use his life for a purpose.  And even though we never know when the shunt is going to malfunction, and we don't know how Anderson will continue to develop, we are so thankful for him and the joy he has brought our family.  I can't imagine life without him.  He is a true blessing.  I know there are big things in store for him as he grows and I can't wait to watch them unfold.  I am so thankful God chose me to be his mom.  Thank you to each one of you who have prayed for him and stood beside our family ever since that 20 week ultrasound that revealed he would be born with challenges to overcome.  And overcome them he is...each day he does something new that amazes me.