As It Is……

I typed this earlier today and then didn’t have time to proof it….so it may be scrambly or not make sense in parts, but that is how things are going these days and if I try to take the time to work on this….then I may just give up and not post it….and so here it is….here I am…..there is where I’m at…just as it is….

These are some tough days that we are going through right now.

Angelica’s counts have been so low over the past week or so and it makes for some very stressful times. It feels very vulnerable and like she is unprotected. Because the “enemy” are unable to be seen with the naked eye…it makes this fight, that much more difficult. We don’t know where they are and so it makes protecting Angelica almost impossible.

Any open wound, no matter how large or tiny is an open source for infection and at this point, a tiny paper cut could send her into the hospital……

It’s not that the paper cut could send her into the hospital, but that the cut is an open wound and if she comes in contact with a bacteria and it gains entrance into her body…..she has no ability to fight off that infection.

The health that you or I take for granted……the cuts, and scrapes…the bacteria that we come into contact with and never think twice about,… all poses a very serious risk for her.

And right now especially, it’s tough….because she is supposed to be going to New York in 12 days. That’s less than a course of antibiotics (14 days) and throw in the 24-48 hours that it would take to culture the particular strain of bacteria or virus and you are looking at possible 16+ days in the hospital……none of this do we want on a good day…..much less when her trip is in 12 days.

Every time she mentions, not feeling well or that she has an upset tummy or a headache, or she feels hot or cold…..every time she coughs or feels like she might barf……we reach for the thermometer to take her temperature because when her counts are this low, a fever is often the only indicator that something might be brewing in her system.

I have been feeling so worn down as of late. I feel like I am reaching the absolute end of my rope. There are things that are just piling on top of everything else and making the end of this stage of the journey that much tougher.

I’m physically tired. I’ve mentioned this before but it’s true. I can keep putting one foot in front of the other because I HAVE TO, but that doesn’t mean that those feet don’t feel like they have been dipped into cement.

I’m emotionally tired. I’ve spent a good portion of this past week just on the edge of crying and every little “bump” has sent me over the edge and set off tears.

Probably the biggest frustration for me personally is the mental exhaustion……I am just not able to compute things right now. I am struggling with organizing and putting things together. This might sound so simple and ridiculous to you, but I walked around Superstore 3 times on Monday afternoon with my shopping list in my hand and yet……I just could not seem to make sense of my grocery shopping list. I had to double back to pick stuff up and in the end I had to get Jon to just walk me through the last bit of my list as I just couldn’t make sense of it……even then….we walked away from the store forgetting to pick things up.

I walk around my house forgetting what I was supposed to be doing and why…..

I’ve just gone too far and things that I used to be able to do on brain power alone, and then with lists and prompts and gadgets and reminders…….I find myself unable to do even with all the “help” and tricks that I’m trying.

And that inability to function at the top of my game it makes all of this that much tougher. I don’t’ even feel like I’m functioning “in the game” and that sets off those tears all over again.

I’m trying so very hard to be gentle on myself and yet, I expect so much because I am normally capable….but right now I’m not….and that’s hard for me to deal with.

We reach for the thermometer to take her temperature and inside I am freaking out….praying and hoping and wishing (and truthfully panicking) that the thermometer will read low numbers….that I wont see a number indicating a fever….

Just that stress alone is too much right now….

On Thursday her neutrophil count was not able to be counted (it was too low to be measured…lower than .02). Monday when we took her in for blood work, her counts came back at .1 and while this is much better than the previous count….it’s still WAY TOO LOW and she is still SO at risk.

She will get another set of bloodwork on Thursday and we are hoping that her numbers will be over .75 and she can start Maintenance…..

Did you know that exercise actually boosts your immune system? Like immediately there is a benefit……when oncology kids are getting their bloodwork done to be able to start chemo….they have to be at a certain level in order to start the next phase of chemo. If their levels are borderline low…they will actually have the kids walk around the hospital or walk up and down the stairs a few times and then run another set of bloodwork and it will be up and over the level needed…..amazing isn’t it? It’s huge incentive to exercise especially throughout the fall,winter and spring……just some thing to think about, eh?

We’ve been walking everyday. We are hoping to accomplish a few things with this. One, to boost Angelica’s immune system and to get that neutrophil level up. Two, to increase Angelica’s strength level. She’s spent a great deal of this past year on the couch and it’s time to rebuild up the strength and muscle that she lost. Three, we are getting a little bit of sun, which helps to get extra vitamin D into all of us. That “happy vitamin” is so necessary and good for all of us; plus it puts a little bit of color into Geli’s skin and again with the whole…”she’s spent most of the past year inside and on the couch” business…..between that and being chemo induced anemic…..she’s been looking pretty pasty. The color gives her a bit more of a healthy glow….which matches her new healthy position in life! Don’t worry, I’m a big fan of proper and safe sun exposure.

We are hoping, although we won’t know, that her counts will have come up above .5 (the level that she was allowed to safely go to school at) by tomorrow…..this would allow her to do a few more things like going shopping with us and running errands and things like that.

Once she starts Maintenance, then her counts will obviously be high enough and I will feel like I can breath and relax….

To be honest, I’m scared. I’m scared of feeling like I can relax. I’m scared of how I might feel were I to just relax…. I’ve been trying so hard to keep things all together and it feels a bit like a dam might explode and I don’t feel like I could handle that. I’m scared of the tidal wave of emotions that might be unleashed were I to just relax….

I just want to go and sit somewhere by the beach and let the wind blow in my hair ummmmm, well on my bald head, to feel the sand in my toes… just close my eyes, and smell the salt air and let the intensity of this past year just wash away from me with every wave that crashes.

I’m hoping that this summer will be a healing one….and that I’ll get a few chances to make it to the beach.

Author: Patricia Culley

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

6 thoughts on “As It Is……”

  1. First of all we continue to stand with you and your prayer requests…as so many do…God’s presence and healing power continue to be with you, Geli and your family. Secondly Patti, I have invited Lise and the girls down to our beach house in Birch Bay…we are traveling from Montana to spend 2 weeks there as we do every year. I’m not sure if Lise has connected with you yet, but I’ve asked her to find a day or a couple of days if you want to stay, between July 31st & August 12th for ALL of you…to come and enjoy each other’s company and let ALL the kids, her 4, your 5 & my 3 to just have fun on the beach…please think about it and confer with Lise to see what works best. You can email me & let me know….xoxo Rayanne

  2. Praying for you guys!!!! This is so nerve wracking!!!! I know what you mean about being tired and scattered…….and I’ve only been at this for half the time you have. I will be saying extra prayers for Geli’s counts to rise. I just sent Danielle off to camp with an ANC of 100. No way I could have done it if the clinic doctors and nurses weren’t going with her! So now I’m on pins and needles……each time the phone rings, I expect to hear, “Meet us at the ER; she’s got a fever.” I’m sure she’s in heaven because no one is checking her temp after every little strange look, feeling, or bump 🙂 Hang in there!!!!

  3. Awe Patty! There is so much I’d like to say but I don’t think words are enough right now. I am praying for strength and clarity for you, and once things have settled I hope you will have an opportunity to sleep for a few days. That fogginess is your brain saying “I’ve had enough” but yet you can’t give in. I can relate to that on a different level, so I am sending you a great big hug and lots of love. One day I really hope we can just sit down and hash thru our stories 🙂 the one thing that gives me strength is knowing how good god is and how much he loves me and that he carries me through so much. And I know you know he is carrying you too 🙂 ok for someone who said they wouldn’t say much I am sure getting carried away 🙂 there is hope and light at the end of the tunnel, carrying tissue around in your pockets is also a good idea too! 🙂 lots of love!

  4. Patti, I am so sorry for everything you and your family are going through! I just wanted to let you know we are praying for you all.
    Reading your post and how you are feeling was like reading my feelings this past year….when Joshua had his stroke last May everyone would say to me you must have just sat down and cried etc…and I would tell them “when” when I am staying at Childrens 24/7 or when I was staying with him at Sunnyhill 24/7 or when I came home twice in over a month to see my younger two kids…the whole situation is/was exhusting…We believe (whether true or not) that we have to be the strong ones as parents, we are with either Josh or the other kids all the time there is no time to “break down” you don’t want any of the kids especially the one going through the ordeal to see you upset or think things might be worse than they are! Trying to help them and keep things as “upbeat” as you can while inside your scared spitless!! I was so organized before and have yet to be able to get back to being “clear minded” I just feel overwhelmed as I know you guys must feel too! I can’t imagine how much harder this is for you guys than for us, Joshua has some permanent damaged cause by the stoke and has to go for blood tests every 3 months and to the spinal clinic at Childrens every 6 months probably for the rest of his life and that is tough enough but Chemo & fevers and blood counts is so much more to deal with! Just let me say this, sorry this went longer than I intended, years ago in 1992 Brian was diagnosed with Cancer and did chemo and radiation and he servived and was healed by the Grace of God and Angelica will come out of this a much stonger “woman” of God!! That is how we feel about Joshua as well that God is using this to make him a stonger “man of God” and he and Angelica are going to do great things for God because of what they have gone through!!
    Thinking of you guys and praying for you all!

  5. I am praying for you.

    But those that wait on the Lord
    Shall renew their strength
    They shall mount up with wings like eagles
    They shall run and not be weary
    They shall walk and not faint
    Isaiah 40:31

    I am believing this Scripture for you.

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