Last week Thursday I got a call from Disney World to inform me that our application for the Disney Compassion Partnership Program had been accepted!! The compassion program is part of the Make-A-Wish Foundation. Basically, Dr. Downey wrote a letter to support us and Disney World accepted! We will get 5 three day 'speed' passes when we get there. The speed passes allow us to go up to the front of the lines so we won't have to wait in any long lines.
We are going with Kristi's sister Lori and her 2 kids. This will be a nice break for all of us...8 days, 7 nights with no worries. It will be just us having a good time together! We are going to be staying at Lori's time share villa. We leave this Thursday and return next Thursday.
All the pieces fell right into place. Kristi and Lori were able to get some really cheap airline tickets (non-stop from GR!!), rental vehicles and the extra room at the time share all booked on line. For those of you that don't know Kristi's sister...she is a pro at getting great deals!!
Everything is now booked and we are geeked about going!! This will be my family's first time to Disney World. Kristi was there as a child and I was to Disney Land but neither of us really remember much of it. After all, that was a really really long time ago. The other piece that fell into place for us was our house sitter (well, and 2 dogs and a cat). Kristi's cousin Justin will be watching our house while we are gone.
Of course Kristi and Lori will be getting their much necessary pedicure on Tuesday in preparation for the trip. For some reason they don't think that Zach and I should get tats for our version of a pedicure. Just doesn't seem fair. Oh well.
Have you seen the new TV series "V"? Kristi and I are hooked on it. Hey, something has to replace Lost! Can you believe Lost is done?! Anyway, speaking of alien babies being born on the mother ship, Kristi and I both watched V when it was on TV the first time, back when dirt was still fairly new. In fact, when we were on our 5 year anniversary trip in Gatlinburg, TN, we rented the entire series from a video store and watched it every night. So this is very nostalgic for us. Of course we can't watch it during the week so we DVR it and usually end up watching it on Friday night...like tonight.
But for some strange reason tonight was different. I'm not sure why, but at some point through the show my eyes welled up and I almost started sobbing. Good thing we had 2 dogs sitting between us and it was a rather intense scene so Kristi couldn't see me. Why did I tear up as the FBI was raiding a V conspirator's apartment? Well, it had nothing to do with the show. For some reason I started thinking to myself that in 6 months, a year, 2 years, sooner than in the time I want anyway I won't be able to watch these silly shows with Kristi anymore. I will be sitting alone on the couch with the dogs. We were supposed to grow old together. Retire and live in a farm house with a wrap around fence. Who will I laugh with? Who will I have to laugh at my silly jokes? It feels so lonely. That's where my mind was going. That's what brought on the welling eyes.
Then I came to grips and asked myself "what good is this doing me? why ruin a perfectly good night? just Kristi and I (well, and the dogs), quiet night watching our 2nd favorite show". What good comes in worrying about tomorrow's problems today?
So, we finished watching V. Kristi just went up to bed and I told her I'll be up shortly. Just another night in our house.
Today we had the quietest day in a very long time around here! It was very nice and very much needed. Kristi's sister Lori came and took our kids out to the beach and climbed the sand dunes while Kristi and I stayed home and rested. Then Lori and the kids came back to our house and hung out for a while. The kids play so good together! It was very nice to just sit and visit.
We have a very quiet week planned for this week as well. That is good because the fatigue and nausea is really catching up with Kristi the longer she is on this pill. My hives are pretty much gone. The only possible cause we can think of for my outbreak was a different milk we tried. That's the only thing that changed. Last week I bought milk at a store we have never bought milk from before and it was a brand we have never before drank. So, that's what we're hanging our hats on. Milk. Got milk? no thanks!
Thanks for all the prayers and comments over the past few days. Satan tried, didn't he?! But all of us forced him out again! Nice work!!
Day number 3 of the hives. Yesterday was worse than the first day. I'm covered with hives from my scalp down to the bottom of my feet, the top of my feet, my palms, top of my hands, chest, back, legs and arms. Because they're on the bottom of my feet it hurts to walk so I just lie in bed for another day. This is crazy! I've never had anything like this before. Today is better than yesterday but today I woke up with them on my face. Ugh! They don't itch too bad today so hopefully this improvement is the meds finally kicking in.
This is my shin/calf
Kristi took her 3rd dose of chemo last night. She can already feel the nausea and fatigue kicking in. We're going to try for the rest of the cycle and see how she holds up.
I guess one could really be angry at God right now and scream out "this isn't fair!". Or we could be honored that God loves us so much that he is preparing us for better things in the future. I have to admit, I had some of the "please God, UNCLE" the past couple days. Yesterday I was about ready to scratch myself out of my skin. Then pile on Kristi's nausea. Wow, we were a mess!!
Continued prayers as we weather this latest storm would be very much appreciated.
Waiving the white flag. I surrender. I compare myself to the modern day Job. If it isn't bad enough that my brother in law passed away 2 weeks ago and Kristi's cancer was all but declared terminal, today this is what I looked like when I woke up:
Nothing has been done with this photo. Kristi took one look at me and started making phone calls. My lips were swollen to the point that I could hardly talk, my eye lids were swollen to the point that I could hardly open them and I had this rash all over my body. I was in absolute misery. I've never had anything like this. So, she called our family doctor and they suggested taking me to the emergency room...which is where Kristi took these pictures:
Hives. The doctor said I have hives. Say what? What are hives?! I've never had them before. He doesn't know the reason I got them; he said sometimes stress can bring them on. He asked if I had an unusual amount of stress going on in my like. Well, yes. A little. I'm now taking 2 different antibiotics and a steroid. I still itch like crazy but we'll see what tomorrow brings.
I know that God won't give us any more than we can handle, but I've got to be close to my limit! I don't know how I could handle any more.
Kristi is back on her chemo pill. She did have a few waves of nausea today so we'll see what a few more days bring.
That's it for tonight. Prayers for my hives and Kristi's chemo are what we need now.
The ct scan of my head didn't show anything of concern (hmmmm, seems like I've heard that line before). The plan is to start the daily chemo pill back up again (I didn't take it for the past two nights). I can't say I'm thrilled about it. As soon as I stopped taking it my nausea went away. Anyway, I'll start again tonight and see how it goes. They think my nausea/fatigue had something to do with the bug going around our house. The plan is to see how I tolerate it this time and if it is bad again then we get together and come up with plan B. Actually I think we are closer to plan Q or R or maybe even Z by now.
I know that I don't have to tell you what is going on right now. I don't need to tell you that I am confused and scared. I don't need to tell you that my heart is aching and my mind is racing. I know You already know all of this.
My devotional reading for today said ~ Do not resist or run from the difficulties in your life. These problems are not random mistakes; they are hand-tailored blessings designed for your benefit and growth. Embrace all the circumstances that I allow in your life, trusting Me to bring good out of them. View problems as opportunities to rely more fully on me.
I'll be honest - I have a hard time thinking of cancer as a hand-tailored blessing. I have seen benefits from it and I have definitely seen growth. Our family has grown closer, our children have grown more in their relationship with You and our prayer life has grown by leaps and bounds. We have been supported by family, friends, school, church and even strangers.
I do trust you can bring good out of this. I know that the scarier things appear the more I will cling to you. Thank you for the lessons that I will learn over the next few weeks. I know there will be times that I feel like You have abandoned me but deep down in my heart I know You will never leave me. Ever.
But God, please, pretty, pretty please with sugar on top - please let me watch my children grow up, get married and start families of their own. Please let me spend the retirement years with Brian. Let our hair turn gray and the wrinkles come but keep our knees strong so we can bounce our grandchildren on them. We will do our part to keep our knees strong by spending a lot of time on them.
These are the desires of my heart God.
Delight yourself in the LORD and he will give you the desires of your heart. Commit your way to the LORD; trust in him and he will do this: He will make your righteousness shine like the dawn, the justice of your cause like the noonday sun. Psalm 37:4-6
From sunny to mostly cloudy in 24 hours...I guess we shouldn't be surprised; this is Michigan after all.
We didn’t get the results of the CT scan today but we did get the CA125 results. The last time it was checked was in March. It was 181. It’s now 630. The glass half empty person would say “that’s more than triple”. The glass half full person would say “that’s less than 4 times!” That’s the highest it’s been since one month after surgery, in February of 2007. I guess you would say we’re still numb. Confused. Scared. Wondering “what’s next?”
Amber is going to call us back tomorrow after 5 to share the CT scan results. Hopefully in another 24 hours we’re back to partly to mostly sunny. Maybe she’ll lose our phone number. If she doesn’t call it’s not real, right?
Nathan took the news as he usually does…with little expression. Ashley took the news harder. She asked Kristi if God was calling her home. She said how cool it would be for Kristi to be able to see Uncle Eric. On one hand that makes me so proud. On the other hand it makes me sad she has to say that at all.
I don’t know how I am. I’m just sitting here numb. Next to Kristi on the couch. Me on my laptop, she’s on hers. Hey, at least we’re not IM’ing each other. I’m not giving up hope but the reality of it all really sucks. Just plain sucks.
I know many people will read this and be saddened. Feelings of sadness are OK. But please, when you see Kristi, please try to be upbeat. Talk about the kids, the school year, your latest pedicure…anything but a sad look on your face. She has been getting a lot of that lately. Looks of pity, sadness, lost cause. She needs an aura of positiveness. Is that a word? Well, neither is irregardless but people use it all the time...so I’m going to use it. We will weather this storm and be more sea worthy in the end. These rough times build perseverance. With perseverance, character. You can call me Elmer Fudd by now. Kristi will be Wilma Flinstone. We have had a lot of character building over the past 3 and a half years.
Well, on that note, this is Elmer Fudd signing off. We’ll update tomorrow night.
"Give your entire attention to what God is doing right now, and don't get worked up about what may or may not happen tomorrow. God will help you deal with whatever hard things come up when the time comes. Matthew 6:34 The Message I'm trying really hard to apply this verse to my life but it's hard. Since starting the chemo pill last week I've had waves of nausea come and go that get worse every day. My fatigue has increased, my fingers and toes are tingly and I've been having a lot of twitches. I have had twitches since the beginning of this - it's just a side effect from the first chemo. Usually they only happen at night when I'm sleeping. Now they are coming during the day and also getting so strong that Brian has left to go sleep on the couch. Very frustrating.
Today my nausea and fatigue were overwhelming. It was so bad that Brian worked from home today so he could keep an eye on me. My doctor would like me to go in for a ct scan of my head tomorrow and have a bunch of lab work done including my CA125. His reason for the ct scan is because they think I may have an infection where my tooth was pulled.
The silver lining . . . I don't have to take my chemo pill tonight! And I get to spend tomorrow morning with Brian since he will be taking me. Past memories are flooding my mind right now. I have already "been there, done that and am ready for it to be done!"
We'll try to post sometime tomorrow when we hear from our nurse.
I'm not sure about where you live, but in Holland, MI it seems like we've had more sunny days this year than in past years. OK, yesterday was an ugly day, but this spring it sure seems like the weather has been pretty decent. Maybe last year was just so bad my perspective has changed.
Around here I guess you could say it's been partly cloudy. Up until this weekend things were going pretty good. We are planning a trip for later this month, the kids are looking forward to the school year to be done, and I'm looking forward to summer! But then Friday Ashley came down with the flu and Kristi's chemo is beginning to take a cumulative effect. She's getting quite nauseous and fatigued. Just walking around makes her feel like she's going to throw up. We had to boogy out of church today because she thought she was going to be sick. If you talked to her don't worry - it's a chemo thing, not the flu. She can tell the difference and she says this is definitely the chemo nausea.
Our moods have been much better of late. Well, until Friday that is. I can tell Kristi slid back down when the chemo effects kicked in. She's going to begin an alternative treatment in addition to the chemo. This is something she has been thinking about for quite a while. This isn't a treatment her oncologist would approve of but oh well. This is something she found through another doctor. But, like she put it...we've been trying the traditional method for 3 and a half years, time to start mixing it up.
So that's about it for this update. Prayers for Kristi and that the chemo effects start to mellow, that the chemo does its job, and to give Kristi peace of mind as she begin this new therapy.
The title a few posts back was "Light and Momentary Troubles". When I started typing that update it was simply to vent, whine and complain. I wanted a remote control so I could fast forward, rewind or at least pause life right now. I wanted to be anywhere in life but where we were right then.
The rest of the post was God reshaping my attitude. He taught me about pain and suffering and looking beyond our current circumstances to our unseen eternal future by showing me 2 Corinthians 4:16-18 -
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. I didn't know as I typed those verses that the very next day they would be read during Eric's funeral service. Those verses have been what Lori & Eric had clung to, believed in and lived out for the past few years.
I vividly remember talking to my sister at our family camping trip three years ago about this verse. After she had quoted the verse I said "light and momentary? I don't think so". She has never wavered on this. Ever. I believe this verse . . . I believe that we are outwardly wasting away but inwardly being renewed. I believe that our troubles are achieving us an eternal glory that we can't even begin to understand. I believe that what is seen is temporary and what is unseen is eternal. My struggle is with those two words "light" and "momentary".
In the grand scheme of things, yes, these problems are light and momentary. In the here and now though they feel so heavy and never-ending. I know better days are coming or at least better moments. Right now I have such a heavy heart though. I've made it through the past couple of weeks one step at a time. Some of the steps were hard. Some were taken numbly - one foot after another. Other steps felt like I had to physically lift each leg off the ground and throw it forward while wanting desperately to just leave my foot planted so the next minute wouldn't come. So I didn't have to go through the next painful event.
After the visitations and funeral I did my best to focus on Ashley's special day yesterday. But like Brian's last post said - there was a sadness just lingering. Today starts more chemo. A new reminder that the cancer is still there. The "silver lining" is that the daily chemo pill that I can take at home was approved by insurance and our co-pay is only $200 for a three month supply.
In about an hour I have to go have a tooth pulled. This has been rescheduled multiple times because of life recently. In a nutshell, the gum has detached from my tooth and is very receded. It has been causing a lot of pain and the best option for me at this point is to simply have it pulled. Once I start the chemo my blood counts will take a hit and I won't be able to have dental work done (risk of infections and bleeding) so today the tooth goes. I have anxiety over simply having my teeth cleaned - toady's appointment has nearly put me into a panic attack a couple times already.
I know Brian mentioned in his update yesterday that maybe today's post would be bright & cheery. Nope, not there yet. He called it right on when he said that satan has a grip on us right now. This used to scare me but it doesn't anymore. He may have his claws in us right now but we are aware of it and that is more than half of that battle right there. We know (and he knows) that this grip is temporary and that the ultimate battle with him has already been won. There is absolutely nothing he can do about that. Nothing. By messing with us he is simply ticking off a lot of people right now. His plan is back-firing. He is not gaining any ground in this war but he is fueling the army that is against him. He is giving us a place to direct our anger - at him!
Although I sit here emotionally numb and physically exhausted I know that "lighter" days are coming and that these problems are "momentary". I am struggling in my mind with this concept but deep down in my heart I know it is true. And I know that while I physically pick up my foot to take the next step (while simultaneously kicking the enemy) I know that there are so many people in front of me to catch me when I stumble, next to me to hold my hand and behind me encouraging me on to take that next step.
Look out satan - when I push the button "publish post" right now I am unleashing a great big army . . . and they are coming after you.
Tomorrow Kristi starts another chemo regimen. I believe this is round 42, or something close to that. Who knows at this point. 3 and a half flippin years. We really struggled with the decision to start a new chemo. 3 and a half years we have been trying chemo. Same result each time. When I talked with her nurse last week about Kristi's stomach pains her response was "all we can do is treat the symptoms at this point". That caught me a little off guard. At what point?! Are they giving up? I'm not sure if we ever shared all the details from her last visit. But her latest CT scan showed that the cancer has spread to her lymph nodes on each side of her kidneys and he felt some lumps in her pelvic area. Obviously that is weighing on our minds.
We're both pretty messed up in the heads right now. It's been a really tough 2 and a half weeks since coming back from Japan. Day 2 I was back we had our Dr. Downey visit and day 7 Eric passed away. Our minds are still reeling. There have been many many tears of late. So many different emotions.
Today was supposed to be a day of celebration for us as Ashley made her profession of faith in front of church this morning. But it was hard not to notice the heavy weight of sadness weighing us down most of the day. We're not not dwelling in self pity, we just have a lot of emotions pouring through right now...more than the average person could ever bear. I was asked tonight by a friend for specific prayer requests. I just responded "the general stuff, let's just leave it at that." I don't even know what to really say anymore.
As I had more time to think about it, specific prayer requests would be that we evict satan from the foothold he has on us both. It's time to turn a corner. We're ready for some good times. Also please pray that this new chemo's side effects will be tolerable for Kristi.
We'll see if we can't muster up a bright and cheerful update tomorrow. Sorry, but this is how I'm feeling right now.