Can’t Hear the Truth For All the Lies
This is a tough season in our lives and I think that’s putting it mildly.
I don’t understand and I’m not really even trying to understand “why” this happened to us. I’ve found that for me, there is no good that come come from sitting, pondering, feeling sorry for myself and our family and embracing the misery and loneliness of the “why’s”…..to do so only drags me deeper and deeper down into a pit and once in that pit, it’s a thousand times more difficult to get back out of. It’s much easier to claw and scramble and to do everything in my power to stay out of the pit in the first place.
I don’t feel amazing. I don’t feel like I’m doing very well. I do feel like I’m exhausted. I do feel like I’m walking around with cement boots on. I do feel like I’m processing through mud or honey and sometimes, it all feels completely overwhelming.
It’s a good thing that I not choosing to live my life based on my feelings. I’d be in quite a pickle if I were living solely based on how I feel on a day to day basis. (mind you, this is an everyday moment by moment choosing, not necessarily a blam! – now it’s done and all’s well forever and a day kinda thing)
A friend of mine is going through some “life crap” of her own. Everyone has “stuff” that they are dealing with. Life’s not perfect or easy, is it?
I sent her a message the other day, you know…..to encourage her…… asking her “what the truth for today was?”
As soon as I hit send, it hit me like a blow to the chest…….WHAT WAS MY TRUTH FOR THE DAY?
The truth is….I am strong enough to handle this.
The truth is…..I am capable of putting one foot in front of the other and continuing on each morning.
The truth is…..I not going to die because of an overload of laundry….get it….overload.. Ha Ha (well, I thought it was funny!)
The truth is……I will make it through this. We will make it through this.
The truth is…..I might be tired but I am getting some sleep AND if I really need to, I can call someone to help me.
The truth is……We’ve been so blessed in this whole process.
The truth is……Angelica is doing SO well for someone who is going through what she is going through.
The truth is……The kids are and will be okay and in spite of all of this, they will still be amazing members of society.
The truth is…..the truth is…..the truth is…..
Sometimes I get so bogged down in my feelings and I don’t feel strong enough to look past my feelings to see the truth of my situation.
This is a kinda crappy time – that’s not a lie, but inspite of the crapiness……
The truth is……there is a whole lotta good, a whole lot for us to be thankful for, and we have been so blessed and supported throughout this journey.
We will make it through this time and whatever you might be going through…..you will make it too!
Temporary ADD
I’m so frustrated right now. I mentioned this yesterday, but it’s true.
I’m aware that we are dealing with a lot and yet……even knowing that, doesn’t change the fact that I’m frustrated because I’m not functioning well.
Typically I can accomplish a certain amount of things, I can make mental lists and not forget details. I can “see” the lists inside my brain and don’t even need a “paper list” or to use my Blackberry. I can remember dates and names and phone numbers and cross reference them inside myself. I hear Jon talking about his appointments and I can process and integrate all his appointments with our family calendar and pull up vague references and details at will……Reading all of that back, I sound a bit like a machine……but a super, awesome, shiny, sparkly, friendly, super cool machine, right???
Now imagine that machine with glue or honey poured into it. Yah, that’s how I feel!
I’m aware that I used to be able to function at one level and I’m annoyed that I cannot currently function at that level…..especially when that ability to process and accomplish could be SO USEFUL in our lives right now.
I have to write out lists or whatever I was thinking about…..GONE!
I even have a notebook, so that I don’t end up with 50 scrap pieces of paper, as that would just be more to lose or misplace.
It’s really bad when I can’t remember where I put my notebook and by the time I do locate it….what I was going to write down……GONE!
And then if I take the time to sit down and concentrate about what I needed or wanted to write down….I might remember 3 or 4 things that I had previously wanted to write on that list and had forgotten about but there is always that one thing niggling at the back of my mind that I know I’ve forgotten about. I think that knowing that I’ve forgotten something makes it worse, for me.
And then if I go to accomplish what’s on my list, without fail, I’ll finish what I’m doing and remember what it was that I forgot. Especially frustrating when it’s an out of the home activity that I’m trying to accomplish.
So Annoying!
I’m messing up dates of appointments, and am so far behind on e-mail and “the administration” of my house…..GAH! People say they’ve told me things and I have no recollection of it. NONE AT ALL!
I’m even……..GASP!!!!!! Inefficient these days. I hate being inefficient.
I LOVE BEING EFFICIENT! I’m sitting here trying to come up with a picture to explain just how amazing ,being efficient makes me feel and I’m aware how much time I’m wasting because “the words” just aren’t there. That fact is frustrating too.
It’s ALL frustrating. I try to see how this could be good. I believe that you can learn from most things in your life. I believe that, most of the time, you can take something good away from even the bad things in your life. And so even in the middle of my frustration, I ask myself – WHAT CAN I LEARN FROM THIS?
Yah, that’s probably pretty honest too….I’m probably screaming it out just like that, except……you know…… inside myself….because…well, I don’t want to scare the children or any small animals that might be close by.
It doesn’t take the frustration away or make any of this easier, but………
I can be more compassionate to those for whom “organization” and “administration” is not a strength. *ahem* Jon *ahem*.
Being serious though – compassion, patience, understanding, grace and mercy……these are all areas that I can grow in, be more aware of and learn from this situation. Because right now….these are all things that I’m needing from others and if I’m totally honest, from myself.
But…it doesn’t make it any easier and I’m still frustrated.
But it does make me stop and think….what are others going through? That girl in the line in front of me who’s staring off into space when she should be running her groceries onto the belt…..Instead of thinking about how she’s so slow or how I managed to pick the ONE LINE with the SLOOOOOOOOOW person – I want to think to myself…….What’s consuming her and why? The guy who’s driving slower than the posted speed…..instead of being mad that he’s making me late….I want to wonder why he seems so distracted? The lady in the store who’s kids are maybe just a bit too loud? Why does she seem so tired and run down? That person who was supposed to call me back and didn’t….Instead of thinking they were inconsiderate….maybe they got too busy or just forgot?
You never know what other people are going through. If there is anything I can take away from this…..
I want to be more compassionate.
I want to have more patience.
I want to be more understanding.
I want to have more grace.
I want to have more mercy.
Just being honest……….I’m still frustrated though!
Creating Saturday’s
Geli actually cleared her Methotrexate from her system by the 48 hour blood draw but had to stay until hour 56 to get the last “rescue” medicine….
This means that she cleared the chemo from her system (down to below the acceptable level) within 24 hours. AMAZING!
Technically, she was allowed to leave the hospital after the last dose of her rescue med…..which needed to be given at 11:00pm on Sunday night. There was a lot of excitement about possibly being able to go home and sleep in their own beds, and some concern that it might be too late at night and might just cause more upset and stress (on Geli) to try and rush and leave in the middle of the night. In the end, the call of their own beds won out and they chose to leave at 11:30pm.
Jon’s parents – ever so wonderfully – picked Jon and Geli up from the hospital at 11:30pm and drove them home. It was so nice to have them home, even if it was just a few hours earlier than planned, and even nicer to not have to drive into town. Especially with that 8-10 car pile up on HWY 1 this morning. YIKES!
Jon and I and the kids got up a little late and were quite slow this morning. Geli slept in. Xani and Jer were already to go to school….breakfast eaten, clothes on, back packs packed, lunches in backpacks, even shoes on….and then Xani melted down. I’m not sure what the exact problem is/was…whether she was overtired. No one seems to sleep well when Geli’s in the hospital. Or if she just really missed Jon and Geli…well, to be honest, I have no idea what the real problem is/was and at this point I’m not really interested in delving too deeply.
I was a bit surprised that she was upset and crying, even though I shouldn’t have been.
Jon took Jeremy to school. I sent Xani upstairs to sleep, and when I went up 10 minutes later – she was snoring loudly. Obviously needing some extra sleep. Within an hour, Jeremy was calling from school crying about not feeling well and needing to come home and so Jon went to get him.
By this point, I just figured that we were going to have the “Saturday” that we didn’t get to have. We’d do what we needed to. Hang out. Have a slow, down day TOGETHER and then get the kids off to bed at an early time and start fresh on Tuesday. We’d just skip Monday, cause who really likes Mondays anyway, eh?
Just before Jon got home with Jeremy – who was fine….just needing some family time – Geli woke up and was feeling really REALLY good, comparatively.
We had a great day and even were able to think through some of the kids Christmas presents to each other and to their cousins. Our goal is to get everything done by the first week of December and then to be able to relax…….
HA HA HA HA HA HA! Relax! Okay, maybe I’ll just say…….. to be able to cross one thing (Christmas presents) off my list.
By now, it should come to no surprise to me that right now, in this tage of our lives, our family really needs to be with each other after a weekend away. I, in my adult thinking, know that they are only gone for just a few days and that Angelica’s not going in to the hospital “sick” and even with my knowledge and maturity *snort*….. I know how much “I” look forward to them being home and having some time “together”. And yet I’ve kind of just expected the kids to just keep trooping on as if everything is status quo.
I still think that anything that we can do “as normal” is a good thing, but that I need to be more prepared for when the kids indicate (through words, actions, or emotions) that they need a “family” day. It wasn’t a problem to keep them home and I think that it was right to send Jeremy until he asked to come home…..I just hadn’t thought through the possibility of them needing us to be together. “Together” was exactly what we needed.
Fortunately, this is her last “scheduled” hospital stay and for that, we breathe a sigh of relief and thankfulness.
It was a nice day. One that could have been better had I just thought through the different possibilities a little more……
This “whole thinking things through clearly” is really frustrating me right now…..but hey, today was an awesome Saturday!
JUST AMAZING
I love my girls. They are both turning into such amazing young women. Angelica is dealing with cancer treatment and being so brave (and winning) and Alexandra is showing such maturity in dealing with the changes at home. (And I really really really love Patti.)
Angelica is already a teenager and Alexandra is right on the doorstep, and this brings a whole new set of parenting challenges. I’m not freaked out about parenting teenage girls, but I am aware of what the world is like for them. I make a point of watching the shows that they watch and we still get copies of their incoming e-mails. I want to know what messages they are receiving and how they are processing those messages.
The messages girls receive seem to be complete opposites. There is so much opportunity for women today to rise up and be as successful in any field as they desire, and the examples of successful women in business, politics and at home are easy to find. At the same time there are more messages in mainstream media that show girls in relationships that are at best demeaning… In most cases it seems that cheap meaningless physical relationships are the norm and I hate this! The message seems to be that what is inside has value and tremendous opportunity, but what is outside is not good enough, not valuable and not deserving of faithful devotion.
I want my girls to believe that they can be successful and at the same time they deserve to be respected in their relationships (not that they should be dealing with relationships yet), and that there is nothing meaningless about them, their bodies, or their feelings. (I’ve got a whole different post to write about the standards I want my boys to rise to as they become men gentlemen).
I can say a lot of words, but finding examples of this message in the real world is a harder task. It’s not that these messages don’t exist… Last year there was an episode of Bones where one of the main characters was talking to her daughter about relationships and sex. It was an exceptional conversation, completely accurate and a scene I would like to show my kids.
I heard this song on the radio a few weeks ago and I instantly fell in love with it. I dedicate it to all my girls. Patti, Angelica, and Alexandra… You are AMAZING, JUST THE WAY YOU ARE:
Another Beginning….one step closer to the end.
I dropped off Geli and Jon at BC Children’s Hospital this morning for her final dose of High Dose Methotrexate.
Here she is decorating her room for her 3/4 day stay…..
The way this whole 3-4 day thing works is that she shows up around 10am-ish on day 1 (today – Friday) and then gets hooked up to an IV and starts pre-hydrating. She has to hydrate for 6 hours and then the Chemo will start (at approx 4pm) and 5 liters of the medicine will flow into her over the next 24 hours. At 4 pm (approx) on Day 2 (Saturday) they will finish the Methotrexate and then take a blood test to determine the level of the drug in her body and they’ll start to administer the antidote. Based on how she’s done the last 3 times, she should clear the Methotrexate from her system by Day 3 (Sunday night) just before midnight and I’ll head into to pick her and Jon up on Day 4 (Monday) around noon-ish.
So, the kids and I are headed into our last “planned” weekend apart for the duration of her treatment. I’m hoping it passes by very quickly.
We had a GREAT talk with Tim, Geli’s Oncologist, today. He answered a bunch of questions and while we are not yet even at the half way point in this first intense stage of the treatment – we can definitely see that there is an end to this whole journey.
We have 3 stages left before Maintenance. Each stage is 8 weeks long. The first of these stages is basically a mini version of Induction (the very first Chemo treatment) and Consolidation (the second set of Chemo). The second stage is another set of Methotrexate, but instead of getting a dose of 5,000mg of Methotrexate – she gets 50mgs the first week, 100mgs the third week, 150mgs the 5th week and 200mgs the 7th week……that seems so insignificant compared to 5,000 milligrams – doesn’t it? The third stage is another mini repeat of Induction and Consolidation, with the added bonus of Cranial Radiation thrown in.
That should take us up to May-ish 2011 and at that point we start Maintenance…….which we continue on with until September 30th, 2012 or there abouts.
So we are still quite a long ways off, but as horrible as it is, there is a familiarity to these treatments (minus the radiation) and we are expecting Geli to respond quite well. Her counts are expected to be quite low still and there are still a number of appointments that will take us in and out – so we are not quite into the party stage of things just yet.
Despite, the length of time and treatment yet to go, its just so nice to walk away from a meeting feeling positive & hopeful and not stressed & discouraged.
Geli is doing well, and her spirits are up. Her Homebound teacher has mentioned that Geli is doing extremely well and is handling the whole “school & home learning” really well. She is staying on top of her schoolwork and really enjoying participating in class, as she feels up to it.
Her toes, that had caused her so much trouble, have been doing SO. MUCH. BETTER! The ingrown nails had pretty much grown out and the infection was pretty much gone and then two weeks ago she stubbed her big toe and chipped a GIANT chunk out of her big toe nail and now we have been attempting damage control to hopefully prevent any ingrown toenail and subsequent infection.
It’s quite possible that her hair might fall out again in this next round. One of the drugs that she took in the first round is the main culprit for the hair falling out last time and she’s up against it again and so we shall see what this next stage brings. We’re expecting her to have a better time around this second run through this treatment because instead of her bone marrow being full of leukemia cells she had (at last count a few weeks ago) just over 25% of normal cells.
So basically, her marrow was full of leukemia cells….they killed all of those off and now the good healthy strong cells are taking back ground. This is a very good thing.
It looks like we’ll have the week between Christmas and New Years off of treatment and we’re looking forward to that.
Thanks for all your prayers, love and support. Once again, we are so grateful and thankful for you all.
I’m Tired
I have a few things that I’d love to post about.
Pictures to share and stories to write about, and honestly….I’m just too tired.
Things are going relatively well. We’re gearing up for Angelica’s last round of the High Dose Methotrexate which will be happening this Friday though Monday.
Hopefully, I’ll have more energy and time to post soon.
Thanks for all your thoughts and prayers.
We’ve received a few letters and cards and e-mails and every time, it feels like a hug….so THANK YOU!
It means so much. It might seem like to so little, but to us it’s HUGE!
We appreciate everyone of you so much! Thanks for standing with us, and supporting us.
Start of Another Week
Time just keeps moving forward and I find myself frustrated at all the things that I want to do that I never accomplish.
I’m doing lots, but I still feel like I’m running from behind trying to catch up. I “HATE” that feeling of not ever getting things done, but it seems to be the “norm” around here these days.
A little while ago, (I’d guess at a week ago, but I think it was even further ago than that) Geli’s friend came over to hang out and her Mom had picked up both the girls from school and dropped them off at our house.
When she came, she brought the MOST delicious Vegan Fudge Brownies….
I wish I had gotten a picture of them, but they were so good that we pretty much devoured them before I even thought to snap a photo of them and then I was just to lazy and tired to snap a picture of the remaining few pieces after we had all gorged ourselves on the delicious treat.
Siah was particularly thrilled and kept coming back asking for more and more and more.
The next morning we woke up and came downstairs and this was the sight that greeted us…
He had come downstairs first thing in the morning and found the tinfoil that had been covering the brownies…
It was SOOOOO delicious that he had to scrape every last lick from the tin foil…..
Such a silly little boy, but it really was very delicious and we were so thankful to have been blessed like that.
Do You Know?
My Dear Sweet Xandra,
Do you know how special you are?
I want to let you know that you are my most precious 2nd daughter and my absolutely favorite Alexandra. There is no one else quite like you. You are my baby girl…..
In the craziness that is our life right now, I want you to know that you are so SO precious to me. You…..YOU……YOU are an AMAZING girl.
I Love you.
I LOVE you.
I love YOU!
I LOVE YOU!
These are some tough times that we are dealing with and I know that often it has you all messed up inside. It’s got me pretty messed up sometimes, too. I’m so sorry that I don’t have the answers that would make it all better or that would make it disappear. I don’t know why this happened to us. I don’t know why this happened to Geli. I don’t know why this has affected our family.
I do know that this sucks and that it’s hard and it’s difficult and that it can be stressful and confusing and a whole bunch of other crazy, crappy things.
I love it when you come and talk to me about how you’re feeling. It’s okay when your upset or confused or angry. It’s not a problem and I won’t be mad that you’re upset. It’s okay to be upset about this. It’s okay to be upset and angry at cancer. It’s okay to be angry and upset that cancer has affected your sister. It’s okay to be angry and upset that cancer has attempted to destroy your family – physically, emotionally, mentally and spiritually.
It’s okay because although it sucks….we choose to stand and believe the truth about ourselves and about this situation.
We are strong!
We are fighters!
We will win this fight!
We will get through this!
We will walk this journey and even though there might be times when we get tired and weary….it’s those times, that God and our family and friends are right there along side of us. They are carrying us when we are too tired and they are cheering us on every time we put one foot in front of the other one.
I’m sorry for all the times when things are chaotic and it seems like we don’t have enough time or energy. Honestly, sometimes we just don’t have enough time or energy, BUT….this is only a season and although it’s a tough one…we’ll get through this. It won’t always be like this….you can count on that.
You are beautiful. You are amazing. You are so SO smart. Sometimes, I think that you are too smart for your own good, and that your emotional and mental reasoning abilities kinda mess you up sometimes. There are not too many 12 year olds that hold and carry and process the emotional side of things as well or even the way you do. It’s awesome and horrible at the same time.
I wish that you were just an ignorant, innocent 12 year old and that the biggest of your problems was in choosing what clothes you were gonna wear tomorrow or trying to figure out how to organize your homework so that it didn’t pile up on you….But you’re not…..
You are learning some wicked tough life lessons at a very young age and although I wish that you weren’t going through this…..
…..the fact of the matter is that we are going through this. You’ve been through a lot in your young life. From when we lost Nathaniel until now….there have been some experiences that are kinda HUGE and could be overwhelming for some people.
In fact, sometimes they “feel” overwhelming if you look at it all as a whole, BUT…..
But I know that in all of “this” that you are gonna grow up to be the most amazing woman.
How do I know this?
It’s because you are the most amazing young lady.
You have such great compassion and love. I will keep encouraging you to forgive and let go of all of the things that could make you bitter and angry and I know that you will do it. I know that it’s not in you to hold on to the “UGLY” but that your heart is geared to hold onto “HOPE”.
You are a JOY to me and to your daddy and to everyone that you come in contact with.
Your smile, your sweet spirit, your spark, your silliness….Xandra, you are amazing.
When you feel too tired to take another step….when all the thoughts are whirling around in your head like a raging tornado, when you just feel like you might break into a million pieces, when you don’t know which way is the right way or which end is up or down….come and find me or daddy. Come and curl up on our laps and take all the baggage that is wearing you out and dragging you under and let us carry you for a bit. We’ll hold you. We’ll encourage you and we’ll point you back in the right direction….
That’s what we’re here for. To love you, to encourage you, to hold you…..
We are so proud of the young lady that you are becoming.
Xandra, You are amazing!
Do you know how much I love you, Xandra? I sure hope so. I try to tell you and show you all the time, but just so you hear and read it again and again and again…..
I love you, my sweet girl. You are SO precious to me.
I Love you.
I LOVE you.
I love YOU!
I LOVE YOU!
Cousins
Back at the beginning of the month, MY cousin came over to help around the house. She brought her daughter with her.
Charlotte is, quite literally, one of the most beautiful babies I’ve seen.
Her smile is amazing and her eyes sparkle like…..like……..well, they sparkle…..A LOT!
She’s older than Judah, roughly the same size, no where close to his weight, and so obviously 7 months older in actions and abilities. She is just so stinkin’ cute!
She was quite enamored with Judah and when we put him down on the floor for some tummy time, she was so adorably curious.
There were lots and lots and LOTS of kisses and taps. She was so SO gentle with Judah.
I love that our family and extended family are so close and that our kids get to grow up together. Family is AWESOME! I remember when I was younger and all us cousins would get together. We have some fabulous memories, and I’m looking forward to being able to watch this next generation make their own amazing memories.
