Archive for March, 2012

TGIF

Posted: March 30, 2012 in Uncategorized

It's Friday and last treatment day! It's been a very difficult week!
Thank God It's Friday!!!

Chemo Candy

Posted: March 28, 2012 in Uncategorized

Those of us with CIDP are gifted with the encouragement of our scheduled IVIG treatment which helps gain energy, release muscle pain…and for me, gets my life back. Some of my friends I've meet through the Facebook community that also have CIDP refer to this IVIG treatment as “liquid gold.” I've heard other patients here refer to the anti-nausea chemo stuff as “Chemo Candy.” It's the one thing, the only thing that really promises to make you feel better and get your life back.

For me, IVIG was a bit more too…I soon learned that this time was a break, somewhat, from my fast-paced reality of ministry and family. It was the time I could spend digesting thoughts that really, don't get much time to go anywhere…and that's how this blog started.

Now I've transferred from IVIG to chemo…and today is my third day. I slept like a rock last night and I think I made it past the sickness for this morning, so I'm feeling really good and I wanted to digest a thought with you. This thought was first shared with me through the CIDP group on Facebook. I remember reading it and then going about my other needed tasks. Today, I Got to my chair and this lady was talking on her Bluetooth headset, right outside of my area and after a pause I heard her say this phrase:

“Pain is inevitable. Suffering is optional.”

I don't get anti-nausea meds with this round of treatment, so I see these thoughts as a sort of “Chemo Candy” that keeps me focused and going in the right direction.

Though I've been on Facebook a little today, I haven't tried researching this phrase to get the background story…but I'm sure there is one there.

When I first really started thinking about this concept, I was somewhat disturbed. I almost muttered back, “Yeah right…come say that to the people here in this place hooked up to tubes and ivs…I'm sure you would find some disagreement there.”

But maybe not. There is a sharp difference in pain and suffering.

PAIN is usually referred to distress that someone else or something has CAUSED YOU.

SUFFERING is described as distress YOU have brought upon yourself, usually due to YOUR REACTION TO PAIN.

Hmmmm…..interesting thought now isn't it?

“Pain is inevitable. Suffering is optional.”

Pain is not avoidable. People will disappoint us. Sickness will impact us. People can physically and emotionally damage us. Cancer, brain tumors and CIDP…these are all real and all have pain associated that impacts my life every single day. Regardless how hard you try or how tough you may try to appear, YOU WILL EXPERIENCE PAIN. Welcome to brutal reality…enjoy the ride.

BUT

Suffering, our personal reaction to the unavoidable pain in our lives…now, that is something that can be controlled by our choosing. People will hurt us, but it's our choice to hold a grudge. Sickness overtakes our physical and emotional well-being, but it's our choice as to what hold it has on our relationship with God…it's OUR choice to how it impacts our family and friends.

God works THROUGH our PAIN to EASE our SUFFERING.

Sin is a part of our world, thank you Adam and Eve. Thanks to sin, we have pain. Thanks to pain we have quick over-the-counter medications, self-help books, apps that diagnose our illness….the list goes on. Our society does a great job at trying to cover-up the initial pain, without addressing the suffering. We are quick to point out when something bad has hurt us, but not so quick to detect when we bring suffering to ourselves.

That's where Gods grace enters reminding you that you will never walk alone with Him. That one day every tear will be wiped away from your eyes and there will be no more pain, no more death, no more sickness. God is the only One who can offer this promise and sent Christ to seal the deal. Not only did He promise Heaven, but He promised to be with us here in this life, meeting our needs and making our minds and hearts like His. Therefore, when PAIN comes, we can choose to trust in God for guidance and knowing this pain is only temporary.

I've caught myself suffering lately. I get into this mindset, especially during treatment days, I forget that this pain is only temporary. I start thinking that this chapter of my life will never end. I get the results of scans and judge Gods presence by the result…not purposefully, but I admit that the thought is there. I've caught myself multiple times going, “God, what are You doing? Just take the tumors away so I can move on to more important things.” I suffer when I watch my youngest run to the door after me when I leave for treatment. I suffer when I try to answer Josh's tough questions about my sickness. I question God, I throw myself a pitty party and I shut down. Do I have a right to act like this? Truthfully, yes…but where does all of this negativity get me in the end? I turn bitter, I can't help my family and I'm unable to really do anything for anyone. That's not the life I want to live and that's not the freedom in Christ life God has destined me to live.

The point here is this…Pain is inevitable. Suffering (or your response to life's pain) is YOUR option. Choose wisely. the world is watching and you only live once.

Give your PAIN UP to Him so He can SHINE THROUGH YOU!!!!

(Done just in time…where is that U of L guy from yesterday….)

My Date For Lunch

Posted: March 27, 2012 in Uncategorized

I'm updating now that radiation is over and chemo is resuming. I'm
keeping this short, but it was too good not to post…

I was wheeled into chemo and the first guy I saw was wearing a U of L
shirt. I remember thinking, “Oh no…this is bad luck.” I ended up
starting with him to my left…some other guy was sitting next to him
on the other side. He saw my UK shirt and immediately started into
smack about Saturdays game…to him, it was obvious that Louisville
was going to win. I was already feeling sick and he wasn't helping.

Then I puked…usually I have time to react, but not this time…and
yes, Big Red was right in the “Splash Zone.”

I was escorted out and given a more private area. A few minutes ago I
heard the guy yell “No way will I wear that!” the guy sitting next to
him was wearing a Kentucky shirt…and he had an extra UK shirt for
the guy to wear…

I wish I could get a picture…but I can't lie…I feel better now.

And that's how my day is going…

Rescan did show reformation and growth. Not much can be said about
that…that's why I'm doing what I'm doing!! I'm not really thinking
about much but getting to go home tonight. I miss my guys.

Quick Update

Posted: March 27, 2012 in Uncategorized

I wanted to update quickly. Today was rough. Treatment itself wasn't bad once it was started and because there is no ivig or any other meds allowed, it went pretty quick. I just found myself to be tired and well, irritable. People have told me in the past I have a right to feel this way, but why wreck another persons day?? I just feel like crud…I went from feeling great to crud in a matter of hours. Enough said.

MRI and radiation first thing tomorrow morning, followed by another round of chemo.

I think venturing to our hopeful house helped me a bit today…Josh and Caden were so excited and I met a neighbor that gave me a lot of peace about our possible move.

Both kids have been extremely moody today…poor Steve. Irritable wife PLUS moody kids PLUS Spring Break EQUALS…DADDY NEEDS A VACATION!!

Day 1 down…glad its over. Goodnight!

PS – If you get these posts by email, note it sends out the afternoon AFTER I post (not the day of). I'm not sure why really…so, I guess you could just visit the blog site at www.asis2asHis.com for the most recent update.

PPS Got TONS of emails and texts today!!! THANK YOU!!!!

And Here We Go Again!

Posted: March 26, 2012 in Uncategorized

I'm REALLY tired, but I wanted to write to get everyone started on the same page.

Tomorrow (Monday) I'll be starting on my intense treatment week. I will receive chemo everyday and radiation on Tuesday and Thursday. This will be the last approved attempt here in this area, before being referred elsewhere for further analysis (if the tumor is still present). Long story short, the team believes that the chemo and radiation are working, but the break period between treatments is when the most reshaping and growth has occurred. Because there is only 6 percent of the original tumor left, they want one, consecutive treatment week with no break and no CIDP medication. They are referring to this upcoming treatment as my “hell week.” I was already having a hard time going back to treatment but this phrase really doesn't help.

I'm really not looking forward to tomorrow. Josh has really had a hard time lately and is being much more clingy than ever. He woke me up with a soft kiss on the cheek this morning and told me, “Mommy, you are the best mommy in the world. I love you!” He said it twice and I thought for sure Steve told him to say that…but he didn't…it was all Josh! In fact, he has REALLY been trying to be so good lately…he is really growing-up. love my little man.

Steve has both boys this week because it's Spring Break. If you live around us, CALL STEVE and help get the boys out of the house! I've tried to make something fun for them to do each day this week, whether it's going to the park, making pizza or just daddy and Josh time at the movies. Hoping this week is fun for them!!

Steve made homemade chicken Parmesan tonight…followed by homemade blizzards (after the kids went to sleep). I'm still only really attempting one full meal a day (dinner) and wow…love that my man cooks!!! He even loaded up with Sprite, Gatorade, crackers and Cheerios…this is sad, but I'm excited! I feel prepared!

As In mentally TRYING to get myself ready for this week, I started thinking about Noah. He knew flat out that God was sending a flood that would cover the entire earth and would kill every living thing not in the Ark. Every piece of wood that Noah hauled, every nail that he hammered, every stall he built, every piece of food he purchased…every second of every day the FLOOD had to be on his mind. Can you imagine how he must have lived? I can just see him and his family, building away, and each time they “think” they are done, Noah testing it for leaks and starting over again. He knew disaster was coming, but He knew God put him and his family in the middle of the storm. He knew his life story was not his own, but Authored by God. He knew the rain was coming, there was no way around it. I would have asked God, “You created the animals in one day…save me some hard work here and just do that again!” But I'm assuming that was never recorded.

The point here is…we all have storms in our life. Some we can see coming, some we can't. But God can use all the wind, waves, rain…and even animal poop…to eventually bring about a new beginning. Granted, not all of our storms end quite as good as Noah's rainbow…in fact, some storms don't seem to end well at all. But God really does use our storms for His glory…you just have to have the right set of eyes to see it…and for most, this occurs long after the storm has ended.

As the rain starts again, I guess that's my prayer in all of this…that God will eventually reveal to me what He is doing in all of this. But for right now, I just find a slight comfort in the Ark of my family, my church family and my relationship with Him.

See you when I reach dry land…

Rest

Posted: March 23, 2012 in Uncategorized

I've purposefully taken the last week or two…maybe more off of blogging. I've been on break from treatments, so I've allowed myself to spend much needed time with family AND time to get caught up a bit at church. It has flown by…it's crazy to me to think on Monday I will start my intense week of chemo and radiation.

We are still waiting to hear something from UCF about Steve and nursing school. Still trying to get into a house (we have found a great place, but the seller has been EXTREMELY difficult to deal with which means we have been tempted to walk away many times…well see if we can hang on). My rescan was weird. It showed both reformation and possible growth as well as scar tissue where the other tumor was. I'm getting a better scan again on Tuesday along with my treatment.

I'm including a few fun pics from over the past few weeks. I'm REALLY enjoying spending time with my guys!!! St Pattys Day is responsible for the GREEN items!!! Fun time at the beach! Chuck E Cheese! Josh and mommy went to the new Munchies and scored FREE tshirts and free frozen yogurt (shhh…Josh thinks its ice-cream!). FUN FUN FUN!!!!

Without these times of rest, it's impossible to battle the storms like next week. Love my family!!! They remind me how to smile!!

Pictures And Positives!

Posted: March 14, 2012 in Uncategorized

It's still Tuesday (same day as IVIG) and I'm feeling really good! Energy level is still low, but leg pain has already decreased to a dull annoyance…not a constant in-your-face hurdle. It's hard for me to believe I'm feeling this good right now…and in a little over a week and a half, I'll be back to where I was a few short days ago.

I'm up and down as much as the recent Kentucky weather…tornadoes, snow and now 80s I hear?

I thought I'd share a few pictures from this past weekend…my first time being a real soccer mommy AND my first Sunday back at church in over a month!!! Crazy, exciting weekend!!! (Shhhh…don't mention anything about Sunday afternoon…Ive blocked it out…).

I should add..I figured Gods timing for my return to my beloved, Gator loving church, less than 24 hours after the Wildcats had celebrated their SECOND triumph win over the Florida Gator basketball team…well, I decided to show a little team spirit. I wore my UK hat, put my stuffed blue Wildcat sporting a UK hat in the basket of my scooter and sported a UK flag on the back! FINALLY…I got a little revenge after football season…