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Update on this weeks injection... and a little about my girls

This week has been rough, to a little surprise.  I was hoping for an easier week. Everyday I have had a little improvement. I'm hoping as long as I can recover that means I'm able to continue. I had another scary and hard reaction to the meds as they kicked in on Tuesday night and we were up most the night managing side effects. I will see my doc Tuesday again and once we talk about everything we will see where we go from here. Is this normal again, the decline and then the upswing? If so we manage and it's terrible but at the same time helping my body fight so somehow we get through. There is the likelyhood we can drop the dose again if it's time and my blood work will make that decision.  I pray for that anyway, that as we progress there won't be any hard decisions to make because my blood work will show that my levels aren't stable. Right now I'm anemic and my levels are ok but just passing the ok mark, so as I continue to take the injections we pray my body can stabilize every week before it goes down again. If there starts to be a trend in differnt things going down and staying down then that isn't good. For now it's been ok besides my hemoglobin. I honestly don't even know what all this mean I just listen to what the doctors tell me. There is also a likelihood that my doctor doesn't like the reaction I had again and tells me I'm done, I'm prepared for that.  She was very serious last week when she said we aren't messing around and I trust her judgement to tell me what is best for me. To be honest I'd be ok with stopping whenever it's time, this is so so hard, harder than you can imagine and I've never felt more terrible than I have on different days over these past couple months. God knows my future and the number of my days, it's hard to live life to the fullest when you can't even wake up and get out of bed. Stopping Sylatron doesn't mean I stop fighting by any means it just means I have to fight in other ways and we will go there if we have to. 



I'm doing ok mentally trying to figure all this out. I actually am having some major "Chemo brain" and that is ok right now, maybe a gift that I am not able to process too much. It's a challenge to try to manage my meds without help and I'm thankful my sister is here still helping with the kids and their stuff. I still feel incapable of a lot, physically and emotionally. It's crazy how usually at this time of year I'm running around doing a million things and this year all I plan are my doctor appointments and shot schedule, when I'm going to be sick and what drugs to take when.  My how life takes a turn. Sleeping is still a struggle. It's been awhile now since I've had my surgeries, been on all kinds of medications, and it's turned my schedule around. Similar to a newborn, I'm awake at night and sleepy all day, meds seem to be helping less and less and my mind, once it's quiet at night, seems to race until the early morning hours. I need more sleep for my body and so we need to come up with a new plan for that on Tuesday. The longer I am on this drug the more cumulative side effects will start, I'm already barely managing so again we get through one day at a tie. So that is the update for today, and it changes often but here is where we are. 

We wait in hope for the Lord;
    he is our help and our shield.
21 In him our hearts rejoice,
    for we trust in his holy name.
22 May your unfailing love be with us, Lord,
    even as we put our hope in you.
Psalm 33:20-22


I have to write about my girls. I've told them for years that on their 10th birthday they could all get their ears pierced. I cried one night after my diagnosis about little things in life like this that I was afraid cancer would ruin for me. Looking back it was one of my many irrational moments but seeing the end of life is sometimes good for us all. One struggle I've had since all this began is how to understand the "wait" in life. If you've waited for PET scan results or a doctor to call and tell you its cancer, then you can understand how hard it is to wait. There are circumstances we cannot change but must wait for, and other things in life where we can choose to wait. Maybe it was a mistake on our parenting to give in to our word, but seriously I'm still in a fog of looking ahead and not at a place yet where I can wrap my mind around waiting for future plans. It will come, I know, but I'm still in the midst of figuring out how to be strong in this cancer fight and live with hope and at the same time just focus on enjoying the moments Gods given us for as many more days, months, years we all have.  For instance, why would I tell all my girls they had to wait until they are 10 when we are all here now to experience these fun moments together? I know that this isn't a way to live your life always or any model to teach your children but there have been things that have just changed around here. I know the value in the wait of life, the way that we seek God in the wait and we can open our ears and hearts to hear him when we are in a time of waiting and trusting. I also know that there are days for all of us when it's hard to find joy and God has given blessings for us in all kids of ways to experience his joy. We have looked for things that we can do as a family to experience this throughout the new walk for our family. This ear piercing for my 3 little beauties seems silly to most but to me was something I wanted to experience with them. It was all so spur of the momet and we simply asked them if they wanted to do it. After lots of questions and nervous thoughts they were all so BRAVE. God choose a simple life event like little girls piercing their ears to show me how to experience his blessing in life. My brave little girls did something they wanted to do and we all were able to do it together. It was fun for them, and for us, and now we have no clue what they will get for their 10th birthdays but we will figure that one out once we get there. Ha. I have a feeling the rest of my life will consist of a lot less planning than I thought it would. Maybe instead more of looking for ways to experience God's Joy in the day even if that means letting go of some of the waiting and anticipation we have set up in life. Goodness, cancer changes stuff, in more ways than anyone can imagine until you are living with it. 





























Here is a great read with a simple take on waiting. Don't follow my example, but maybe think of waiting for things in life in a different way... it's so hard but we aren't alone in any of our fights. 

5 Reasons God Makes Us Wait 

It's frustrating, but can be transforming. 


Perhaps you know the feeling of waiting for your phone to charge?
You've run out of batteries, you've plugged the phone in and now there's nothing to do but sit and wait? And even it really only takes a matter of minutes (and even though it's nothing more than a phone), you start to feel tense and anxious, wondering how long this could possibly take.
Most people don't like to wait. We often get frustrated waiting on fast food or waiting behind the slow car in the fast lane. We are always in a rush to get to the next place or the next thing.
This mindset often carries over into our spiritual lives with us rushing to the next big thing. 


But while most of us are in a hurry, it seems God is usually not in a hurry. The Scriptures say He is slow at going about things. It seems He always has a plan and a purpose for everything.

The problem with waiting is not having all the details. From our perspective, we have everything figured out and we want God to move within our timeframe.
Waiting is a part of life and one of God's tools for developing people.

But God rarely does things according to our timeframe, and because of this we can easily get discouraged. If we aren't careful, we'll think He's uncaring or mad at us.
In the Gospels we see this happening to Mary and Martha while they are waiting on Jesus to come and heal their brother, Lazarus. When Jesus finally shows up, He is accused of taking too long. 


God always has good reasons for making us wait. Waiting is a part of life and one of God's tools for developing people. The Bible is full of stories of people having to wait on God, such as Noah, Abraham, Moses, Joseph, David, Daniel, Jesus, Paul and countless others.


In studying the lives of these great people, I've discovered 5 reasons God makes us wait:



1. Waiting Reveals Our True Motives



Waiting has a way of bringing out the best and worst in people. People who don't have good motives won't wait long because they're not interested in the commitment it takes to see something through. They're too interested in short-term gains or success.
Most of us have good intentions, but a lot of what we want to accomplish is an attempt to make a name for ourselves or for our own egos. It hurts to say this, but it's often true.



2. Waiting Builds Patience In Our Lives

Patience in waiting for small things leads to having patience in the bigger things. If we can't wait for God to do a small thing, we certainly can't wait for something bigger.
Our problem is our perspective is usually wrong. We tend to think the bigger things in life are finances and possessions, while God thinks influencing and changing people is more important.

3. Waiting Builds Anticipation


Why do children get so excited around Christmas? Because the wait has produced anticipation. We tend to appreciate things the longer we have to wait for them.

A few years ago, my family and I were going through a difficult season. We had to live with my mother-in-law for a few years. During this time the Lord assured me that one day we would own a home of our own. It took a few years to see this happen, but when the day finally came, we could hardly contain ourselves.
Because of having to wait so long, we tend to cherish and take care of it more than others might. People tend to treasure the things they have to wait for.



4. Waiting Transforms Our Character



Waiting has a way of rubbing off the rough edges of our lives. Most of us know the story of Moses delivering the Israelites from the Egyptians. It's a grand story of God doing great miracles.
But few sermons talk about Moses having to wait in the desert 40 years before God came to him. God used this time of waiting to transform his character. We know this because when he was a young man he was brash and impatient. In his impetuousness he killed a man and hid the body. When his sin was made public, he ran for his life and was exiled to the desert. When he was given a second chance he opted to do it God's way and in God's time.
In the end, the Israelites were delivered from slavery and Moses became a great leader. Waiting transformed the life of Moses and it does the same for you and I.



5. Waiting Builds Intimacy and Dependency Upon God



The reason we are able to read about the great men and women of the Bible is because they all had one thing in common. They were all people who learned their success in life was directly proportionate to their intimacy and dependency upon God. For them, a relationship with God wasn't a get rich quick scheme. For many of them it was a matter of life and death.
The good news is that God never asks us to wait without Him

Waiting during the difficult times developed their relationship with God. 

Some of the most intimate relationships we have in our lives are because a friend stood in the trenches with us during the heat of the battle. Maybe this is what the scripture means when it says we have a friend that sticks closer than a brother (Proverbs 18:24).
The reason we get to read the stories of these great men and women is because they went through the difficulties of life with God. In the end, they enjoyed the process with God and the promise of God.


I've always believed God is just as interested in the journey as he is the destination. If not, all the biblical accounts would only include the feel good parts and not the good, the bad and the ugly of the times of waiting. We may not always understand why we have to wait, but the good news is that God never asks us to wait without Him. 

Comments

  1. What a sweet memory. Such beautiful little angels. Our family continues to lift your family up to our Father who is capable of far more than we can imagine.

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