Until Then

*Long post warning!*

*Medical details/descriptions/pictures warning!*

Feel free to skip if this is not for you!

Sometimes, I write and I seem to be able to articulate my thoughts well enough and other times, to me, I just see a jumbled up, rambling, mess of words. I don't always write everything on the same day so it isn't always one fluid thought. I can bounce around a bit. I hope this at least makes a little bit of sense today. This isn't supposed to be a blog of great intellectual thought. It's just one of the ways I document what I experience and what I think about those experiences and unfortunately, because life isn't all neat and tidy, sometimes neither are my thoughts on it. Sometimes it doesn't sound particularly great. Sometimes it isn't great. Like this last week. It wasn't great. I knew going into this that the last week of the cycle would be hard but this one proved to be exceptionally difficult and I didn't really get the one week "break" I was looking so forward to. Ugh. Trying not to complain, just trying to keep it real. 

I don't remember having skin issues last time except for the short time I was on anti seizure meds. This time, I had two different types of skin rashes. One was like red pin pricks under my skin. It wasn't really bothersome but my skin would break out in these spots if I was bumped or if I scratched and sometimes they just showed up for no reason at all. The other type of rash was actually open sores. These were mostly contained to my torso and oh my, did they ever itch! I tried so hard not to scratch them because the adult in me knows that that wouldn't be good or helpful but oh boy, the six year old in me really wanted to scratch.

                                   

This is the red pin prick rash.

The rest of my skin was incredibly dry and itchy and the cream they gave me didn't do anything so I had to use antihistamines. Unfortunately, only the sedating type were effective so Benedryl, along with oatmeal baths and Advil were really all I had for relief. Not exactly a combination conducive to being awake and alert! 

I also had a pins and needles type of pain in my hands and feet for a lot of the time. The pain is worse in the morning on the soles of my feet and so, for the first part of my day, it looks like I'm walking on hot coals. I also had a couple of days of struggling to get a deep breath in. Thankfully, a chest X-ray didn't show anything of concern and now I have  a Ventolin inhaler again to help me get a deep breath when I'm having trouble. I'm pretty sure it's mostly due to the wildfire smoke in our area, more than anything else. The heat and smoke have been almost unbearable at times for everyone, not just me. That means we've had to stay at home and indoors a lot which means I'm not able to walk like I have been used to which brings it's own set of problems.  Sigh. 

I have sores in my mouth and on my lips and so I have a mouthwash that was developed by Dr. John Akabutu that I can use. I also had a bizarre sensation when I was eating a popsicle that I couldn't taste it. I could feel it was cold but that was it. Thankfully, it didn't last long.

I've  had a couple times where I get very cold and I'm not able to warm myself. This is quite surprising given the heat wave we've been having. One night, I took my temperature after I had been shivering for a few hours and it was 95.5. Not sure what causes this but it is very strange to be wrapped in blankets and thick, wooly socks, shivering away while everyone else is sweating in the heat. My fingers and nails also turned an interesting colour that night.

My hair is falling out although I'm pretty sure no one else besides me can tell at the moment. I get asked about this a fair bit. With this type of targeted chemo, my hair is not supposed to fall out and it didn't last time but apparently this time, my hair didn't get the memo. Time will tell.  

Last but not least is the fatigue. Oh my. Sometimes I am just tired all day. Sometimes it comes in waves so I at least have some energy at some point in the day but then it suddenly disappears and I'm quickly looking for somewhere to sit or lie down. I can be talking and I have literally fallen asleep mid sentence and also while someone was talking to me! That was a bit awkward!

I had a follow up appointment with the oncologist but we are so early in this treatment that there really wasn't much to discuss. Carry on with what I'm doing. Treat issues symptomatically, as needed. Outside of routine bloodwork to check how my body is tolerating this, I have to wait until my next CT in September to see if any of this is having the desired effect. I'm not going to lie, I'm really not looking forward to Monday and starting a new cycle. Or the fact that this might be my new normal seeing as there is no end date this time. Ugh. One day at a time. One bit at a time. Manageable chunks, right?  

There is truly much to be thankful for too. Time. And each moment matters. How do you put a price tag on that? Physically, I'm thankful that most of the sores (with the exception of the mouth sores) cleared up during my week off of treatment so I did get some relief from that and the antihistamines and other medications, although not ideal for long term use, did help. To date, I haven't had the neurological issues that I struggled with last time and I am extremely thankful for that! I'm thankful that I have been able to continue to do some things in my regular routine even though I might feel like an over cooked noodle while I'm doing them. But my brain/heart has to be in the right place. Otherwise, on days like today, it feels overwhelming. 

Do you sometimes read my words and hear hope and joy in them and yet at other times, you can detect a bit of despair? That's because it's all here, love, hope, joy and truthfully, sometimes despair. Today was one of those days. I woke up feeling nauseous and so tired and very emotional and it pretty much lasted all day. Ugh. I literally have to force myself, on these days, to do things I do not feel like doing in an attempt to 1. keep life as normal as I can for my family and I and 2. to not spiral downward in a vortex of self pity. 

But sometimes I have days when I look at all that is going on, and I can feel myself start to sink and that's when I have to stop what I'm doing and just be still before the Lord. Please don't believe anyone who says the Lord won't give you more than you can handle! He absolutely does allow it and the reason, forgive me for repeating myself, is because HIS strength is made perfect in our weakness. His Grace is sufficient. He doesn't promise to remove our trials and give us happy, carefree lives, He promises to be with us when we go through trials and to comfort us and that's why we need to keep our eyes fixed on Him. (Why we have trials goes a little bit beyond the scope of this blog but maybe I'll tackle it one day? LOL) That is where my strength comes from. That's where I find Peace that passes understanding. When I talk about the Lord Jesus comforting and strengthening me, does this sound foreign to you? Can I ask you a question? Do you know Him? Not in the way like you know who is the President of the United States but in the way how you know your most intimate friend? And does He know you?  Not is He aware of your existence but does He know you? Has He stood before God in your place and taken what was meant for you and let you walk out free? Do you  know why He even did that in the first place? If you do, then do you love Him? With your life, do you make it a priority to show Him your immense gratitude by making it your chief end to bring Him Glory? Friend, until you've experienced these things and know why and how He made them possible, then you can not know where my Joy and Hope and Strength come from. But I can assure you it is not from me. By myself, I am neither strong or brave. Feel free to ask anyone who knows me! 

You know that helpless feeling, all is lost and nothing is worth anything and you hate everyone? I know. I've felt it too. Or that incredible sadness that just sits in the very pit of you and washes over you threatening to drown you, wave after wave, Ugh. I've known it too. The only difference between that me and the me today is that Someone picked me up out of that mire and set me on a rock and gave me things I didn't earn or deserve and filled that aching hole within me with Himself. He washed the mire off me and did all of the things I couldn't do for myself and I can't take credit for any of it. He searched for me and didn't stop until He found me and then He wouldn't let me go. 

He loves me!

You can fill that spot in your being that was made for Him with all sorts of things and you can use whatever means you have available to dull the ache but my ache is gone! I crave to be closer and closer and to be more like the One who saved Me. If He hates something, then I hate it too. If it grieves Him, then it grieves me. You might say that's all fine for me, but in His Word, He has literally told me to tell you about the Good News that you can be saved too! How I long for you to experience it!

So (if you're still reading, thank you!) yes, some days I struggle. I struggle to keep my eyes fixed on Him and I struggle to find the balance between living intentionally but still dealing with physical challenges. I know that my physical body will die one day. I am so incredibly thankful I will never suffer a spiritual death, as in being separated from God, but yes, my physical body will die. Maybe soon, maybe not. That's not my concern. What is my concern, is how I live my life until then. Regardless of how I feel. And this is the battle that many of us face, how to bring our minds into submission when our bodies are struggling. How to do what we should do instead of what we feel like doing. I confess, I am still figuring this part out but what I have observed is that Hope and Joy play an integral part! Maybe even the only part? And it's not the kind of joy you feel when you're having a good day. It's a type of Joy that is deep down inside of you and is truly unexplainable. And it's not hope like the kind where you hope it's sunny tomorrow. It's a Hope that longs for greater things than I will ever know here on this earth. The kind that make you long for the day when all of the sadness and sickness of this world will be over and all of the tears will be gone and all that will be left is eternity with the One I love. 

Until then, we carry on and keep our eyes fixed on Jesus! Day by day. Step by step. 

Don't focus on the storm. Don't try to look into the future. 

Just do what's right in front of you. 

Just do the next thing. 

~ Until Then ~

My heart can sing when I pause to remember,

A heartache here is but a stepping stone.

Along a path that's winding always upward,

This troubled world is not my final home.

But until then, my heart will go on singing

Until then, with joy I'll carry on.

Until the day, my eyes behold my Saviour

Until the day God calls me home.

The things of earth will dim and lose their value,

If we recall they're borrowed only for a while.

And things of earth that cause this heart to tremble,

Remembered there, will only bring a smile.

But until then, my heart will go on singing.

Until then, with joy I'll carry on.

Until the day, my eyes behold my Saviour

Until the day God calls me home.

This weary world with all it's toil and struggle,

May take it's toll of misery and strife.

The soul of man is like a waiting falcon,

When it's released, it's destined for the skies.

But until then, my heart will go on singing.

Until then, with joy I'll carry on.

Until the day, my eyes behold my Saviour

Until the day God calls me home.

~ Raymond Price ~

1926 - 2013

Therefore, since we have been justified by faith, we have peace with God through our Lord Jesus Christ. Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. Not only that, but we rejoice in our sufferings, knowing that that suffering produces endurance and endurance produces character and character produces hope and hope does not put us to shame because God's love has been poured into our hearts through the Holy Spirit who had been given to us. For while we were still sinners, Christ died for us. For one will scarcely die for a righteous person - though perhaps for a good person one would dare even to die - but God shows his love for us in that while we were still sinners, Christ died for us. Since, therefore, we have now been justified by his blood, much more shall we be saved by him from the wrath of God. 

Romans 5:1-9