It’s “THE CALM” …………

I don’t want there to be any storm following this calm period and so we’re just stopping with, “THE CALM!”

This past week has been – shall I dare to day it – FABULOUS….you know as far as chemo and side effects and Lumbar Punctures and Full Body Bone Scans because of legs that refuse to un-gimp themselves despite physio and chiro and massage and…

Well, We’ve got one full complete week under our belts and Angelica is doing AMAZING.

Honestly, I think that she is feeling better than she’s felt in months. It’s awesome to hear her bossing around and bagging at her brothers and sister. It sounds so “normal”. She was so quiet and down and tired and….well, when I look back, I think she had been sick for a while. So not cool! She has life in her eyes, a spark in her step and… an edge to her voice (hee hee) that has been so lacking for a long time.

The chemo make her feel a little “off” but over all she’s doing okay. We are trying some different options for her with her oral meds and it seems like it’s helping with feeling yucky in the mornings.

Her leg has finally started playing nice and is stretching out nicely and not hurting her any more, and the bone scan showed that she has a fabulously healthy teenage skeleton with no issues.

She is headed into Children’s early tomorrow for another Lumbar Puncture and a IV shot of Chemo. They are going to take her bloodwork and we should know where her levels are at that point. They are expecting her levels to all have dropped or to be dropping and to be at their lowest by the end of this week. This can be a little scary or nerve wracking as we feel a bit on high alert for anything “going wrong”. She could get a fever and end up in the hospital for 2 weeks on a run of antibiotics and that would TOTALLY SUCK!

We are asking for prayer over this time that Geli would remain infection free and that things would just carry along smoothly and that we’d be able to continue along with the treatment plan with no side effects and no delay of treatment. If her counts go too low, they have to delay the treatment until her counts come up….

She is also scheduled to go and pick up her wig this week, and that should be so much fun!

I’m feeling….well, I’m feeling all over the place.

I’m trying to hard to stay on top of things….the house, the meals, the laundry, the kids….and I feel like if I don’t keep going, that I’ll get behind and everything will fall apart or become completely overwhelming. I feel like I’m going in super mega overdrive from the moment I get up until the moment I get into bed and even then….all I can think of is everything I didn’t get accomplished that is piling up on top of everything else on the list for the next day.

I also find that emotionally, mentally and physically, I have nothing in reserve and so it takes very little to deplete whatever energy I had and then I crash.

For someone who thinks she can “do it all” this is so SO frustrating. I feel so upset and angry at myself. I know that our child was diagnosed with cancer and then I spent 2 weeks living in a hospital with little to no sleep before I had a baby and then went home to care for 4 kids for a week, and then headed back to the hospital for another week with a newborn and that I was riding a wicked WICKED emotional roller coaster during all this time, but to see and feel how “off” I am – it’s so discouraging.

Geli went and visited my mom (across the street) on Saturday and so we took the opportunity to run a few errands. I went into the first store while everyone else waited in the car and by the time I came out – 15 mins later – I was DONE! Honestly, Emotionally and Physically, I was spent and yet……..We HAD to go grocery shopping and we also needed to hit another store on our way home.

I know that the easiest thing, would be to just say….well, we’ll do it later. But, honestly, there is so little “available” time with Jon or the van and by the time the evening rolls around…I’m so spent from the day…I’m not doing anything except praying everyone goes down early so I can too.

So, I powered through, got home and lost it. AWESOME!

But, we have groceries, and the rest of the week planned out and taken care of and so at least that’s one thing that I can scratch off the list.

Honestly, things are so “off” around here and its showing in everyone. Everyone is off just a bit. Xani is melting down regularly. Josiah is testing every boundary and doing so in either a whine or a scream. Jeremy is fixated on the computer to the detriment of everything else in life. Geli is addicted to solitaire on her iTouch. Jon is short and testy with everyone and I’m exhausted and so close to falling apart. It’s brutal!

This is so far off of how I “see” my family being. This is so far off of everything that I’ve worked for for years and yet…..right now we are just coping…and barely doing that.

I’m scared. I’m scared that Geli will end up in the hospital for another big chunk of time and I’m not sure that I could handle all of that very well. Obviously, I get no choice…I’d have to handle it and yet, it’s the “very well” part that I’m concerned about.

This is difficult.

I’ve sat down tonight purposing to write something…anything (as it’s been a few days) and yet I have nothing concise or well thought out to share. I feel like I’m just blathering on and on and on with no clear point to make and I don’t want to come across whining and yet…this is hard.

This is brutal tough road to walk and yet, walk it, we must!

It feels like we are just scraping enough energy together to just be able to put one foot in front of the other. There are a million e-mails that we want to respond to. Phone calls that need to be returned. People to be connected with……and no time to do it in. Or even if there is a smidgen of time, there is little to no energy to do it with.

We hope that no one takes it personally, if we don’t respond in any sort of a timely manner.

There are only so many things that we can cram into one day and some days………well, lets just say that most days we feel like we are sinking and a good day feels like we’ve treaded water all day and just managed to hold steady.

I’m trying to believe that things are getting easier and I think they are. Slowly, but surely…I think they are. I hope?!?

One day! One hour! One minute! One breath!……..

Author: Patricia Culley

I'm the ringmaster of my own circus. Just trying to stay one step ahead of the monkeys.

5 thoughts on “It’s “THE CALM” …………”

  1. So, I’m still praying, and thinking of you, I know you have family close by that can help out, but if you need someone to run to the grocery store in the middle of the week cuz you are swamped, email me a list and I’ll drop it off for you. Seriously. Just call and say Hey Jen, I need this, this, and that. and it’ll get done.
    love ya,
    Jen
    778-833-1919

  2. Hey I think you are doing great! I am amazed that you can find the time to write how you are feeling and what is happening in such a real honest way. THANK YOU. It makes us feel like we are really part of the family and not just in the distance. You are all so amazing.
    I love you all so much. Hugs and Kisses all round.
    (I can do that this way but I couldnt come to visit – I have a real chesty cold. Hehehe)
    Love and more love
    Beryl

  3. Hi Patti & Jon;

    Just remember 604-780-6990. If you need a lifeline thrown, know that you guys and your situation IS the priority. Everything else gets “back burner-ed” until you are taken care of. That includes, looking after kids, shopping, taking a kid to an appointment, or just about anything else that is needed. Of course y’all are first and foremost on the prayer list. Remember, this isn’t forever.
    Blessings.
    Papa C.

  4. ME TOO ME TOO!!!!…Still praying for you guys that is 🙂 thinkin’ about you all the time. a wise fish once said….just…keep…swimming 🙂

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