Archive for May, 2008
I spoke with the neuro-oncologist today. He confirmed what I had been thinking. I looked at the MRI when we first got home from the hopsital, but was hesitant to write anything because I’m certainly not a doctor (I just have plenty of experience looking at Misty’s scans). Turns out there has been no change since the last MRI. The medical take on that is that this chemo regimen is holding the disease at bay. So for the first time, literally since like October, the tumor has fully responded to a chemotherapy.
Unfortunately, the response is not quite as good as we’d hope for (reduction in tumor is the hope). There is a flicker of light, but we are not out of the tunnel. The left hemisphere of Misty’s brain is filled with cancer (when she gets better I’ll show you the pictures). To stay status quo and not get any worse, simply means she may have an extra couple weeks on earth that she may not have had if it were still getting worse. Staying the same (at this stage) will not save Misty’s life.
But, while we are not out of the tunnel….we are certainly not trapped in it. Misty is encouraged by this news (as am I, despite my matter-of-fact depiction of it) and she is continually growing in faith. She is an example to many of us. So yes, we can be excited…and hopeful. Thankful for sure and very hopeful.
Misty has gotten into this mode where she stays up late with me, just sitting on the couch and watching TV (ahem…season 3 of The Office was purchased today at target). I think its comforting in some way for her. She sleeps plenty during the day, so its not like she is sleep deprived or anything. For the past two nights something has woken up little miss olivia at about 2:30am. It’s strange…we are laying down (yes, I was going to skip my daily blog today…haha) and I wake to her screaming in the next room. Well, after some rocking and a fresh tucking in, she is asleep again. And since I’m up, I’ll write. (on a side note, I do usually write after midnight. I just change the timestamp on the post to like 11:55pm so it shows up on the same “waking day”. I’ve always hated that 3am is technically the next day)
We had this MRI today (we will probably discuss it with Dr. Raval tomorrow). It was ok. I noticed something though. It was like you could see the sadness in the faces of the MRI technicians…it was sort of disheartening. They all love Misty. There is something about her…everyone just loves her (huh…whats “biased” mean?). She has been getting MRIs there for 8 years now, so all the technicians know her pretty well too. But these last couple trips have been different. Today I had to roll her up in a wheelchair and stand in the room with her (she is scared for me to leave her alone because she can’t talk). And as I pushed the old wheelchair up to the edge of the magnetic room, I could see their smiles were a little different than usual. There was almost a subconscious withdrawal from their standard warm greeting. The usual extra-friendly demeanor was replaced by a courteous, caring, but reservedly businesslike greeting. A matter of fact pleasantry that would be expected by someone new…not an old friend.
And it’s not just the MRI technicians. Really, they are just the object of my example and are probably the least offensive case. It’s many people. Seems like people aren’t sure what to say…so they don’t say much of anything at all. So if you run into Misty while we are out on an afternoon ride or if you happen to see us eating lunch in the car parked at a local favorite, just be normal. Say hi. Tell her about your day. Let her know you are thinking of her. Don’t expect much more than a head nod or two to let you know she is listening…but do talk. She’s ok. We’re ok. Life is weird…but ok.
It’s gonna be ok.
(by the way…I’m so encouraged by the myriad emails I get from people that are fasting and praying for Misty today. You are all such an encouragement…thanks)
Today’s claim to fame is that it’s the day before tomorrow. Tomorrow is MRI day; Wednesday at 12:15pm to be precise. Also, tomorrow is the soon-to-be-national Pray For Misty Day (every wednesday – thanks so much to everyone who is praying!!). Its fitting that the two events coincide.
Today did have some value of its own. We ran some errands (I shopped while misty stayed in the car with her mom), enjoyed some delicious crepes for breakfast and we absorbed about 9 episodes of The Office (we just finished season 2 – Misty is loving it.) The going out part is getting increasingly difficult though, as Misty is barely able to walk now. I basically carry her from couch to car and back. We are fighting quite a battle to keep weight on her as well…she just has no appetite. On a bright note, I got a cute little pink camo skirt for Olivia. Can’t wait to dress her in it :)
Back to tomorrow. I’m always wary about taking this blog into the PG-13 realm and discussing the real medical issues or prognosis, but basically, the doctors have lost hope for her. It’s like they have all but thrown in the towel. The last four weeks she has been on a new chemo and tomorrow will tell if that has been effective. If not, there aren’t many other options. Really though, we are in the same spot we were a year ago. We knew there was no cure for brain cancer (thank God that some other cancers are having great cure rates – this is fantastic – this not even remotely the case with brain cancer though), so if left to medicine, Misty would die. We knew that the only hope for her was in God. Today, we are significantly closer to that end point, but really…we are in the same place. The place where there is nothing this earth has that can cure her. The place where the only hope is Jesus. That place is scary….but good.
I’ll leave you with a passage that we read often before bed:
1I love the LORD, because He hears
My voice and my supplications.
2Because He has inclined His ear to me,
Therefore I shall call upon Him as long as I live.
3The cords of death encompassed me
And the terrors of Sheol came upon me;
I found distress and sorrow.
4Then I called upon the name of the LORD:
”O LORD, I beseech You, save my life!”
5Gracious is the LORD, and righteous;
Yes, our God is compassionate.
6The LORD preserves the simple;
I was brought low, and He saved me.
7Return to your rest, O my soul,
For the LORD has dealt bountifully with you.
8For You have rescued my soul from death,
My eyes from tears,
My feet from stumbling.
9I shall walk before the LORD
In the land of the living.
I came up here to my bedroom to write a quick note and I brought Olivia with me. She has been entertaining herself for the last 5 minutes with my alarm clock. She pushes the “sleep” button so the music comes on, then she hits the “snooze” button which we all know turns the music off. Apparently, this doesn’t get old to her (I taught her this a month ago and she still loves it). And of course, she is dancing to every song – she dances to just about every bit of music she hears. I can even get her to dance just by busting out with a little beatbox.
Anyway, Happy Memorial Day. I’d like to remember my late grandfather, Hector LeBlanc. He suffered a gunshot wound to the leg in World War II, which left him without use of his knee. He survived to care for and love his family well into his years. He and my grandmother are both missed.
I’d also like to say thanks to everyone who has served in one of the services. My heart goes out to those that risk their lives to make the world a better place. The sacrifice you and your families make does not go unnoticed. You are heroes…thank you.
PS. This morning was the first in many days that Misty woke up happy…not depressed. Most days start off very rough emotionally. Like yesterday, I woke up and turned to see tears in Misty’s eyes. I’m not sure why…but mornings always seem hard. By lunch time, we are usually ok. Well, this was a wonderful morning and hopefully a wonderful day.
Tonight we went to see Prince Caspian in the theater. Yes, it was a significant challenge to actually get out to do that…but Misty was up for it, so I took her. She has gotten significantly weaker this week. It was very difficult for her to walk (even with my help) – but we made it and the movie was great. By just about every measure I’d rate it higher than the first Narnia movie (which I happen to have enjoyed very much). No time for a movie review, but it’s highly recommended.
On the medical front, things are getting a little worse. And as I mentioned before, overall weakness is increasing, with an increase in sleep as well. And yes, despite the growing amount of symptoms telling me otherwise, I’m still hoping for God to do a miracle here.
The movie was actually quite fitting. When the Narnians were about to be destroyed in a climactic battle, a little girl with faith called on Aslan and he saved the day. Love that story :)
Misty’s uncle’s wedding was a fabulous extrazaganza. He married into a very nice Greek family, so the wedding was full of beautiful tradition. One of my favorite pieces was the Kalamatiano: a dance in which all the guests join the new couple for an organized circular dance (see the steps outlined here). This is apparently a common Greek tradition.
Well, during this dance, many of the participants threw dollar bills on the ground. Which brings me to my image for the night…
PS…today was nice. We spent the morning in the hospital hooked up to an IV. Misty has to get her secondary chemo every other friday. But that went fine and we spent the rest of the day over her parents house. It was beautiful outside as well…which always makes the day a bit brighter :)
In my opinion, one of the greatest songwriters of our day is Steven Curtis Chapman. His style is usually aimed at an age a bit older than me, but I’ve always respected his fantastic musicianship and songwriting. Well, yesterday at about 5pm, his youngest daughter was killed in an accident at his home. I’m continually reminded that whatever I go through in a day….there is always someone having it worse.
Read more at his site: http://www.stevencurtischapman.com/
Well, today we met with our neuro-oncologist. Misty lost some weight again….she’s 106lbs (I started giving her Ensure shakes this week to try to keep the weight on). And he was displeased with the lack of function in her right hand (she can’t feel anything, or even lift the arm at all) but he didn’t seem really surprised. We are scheduling another MRI for next week (oh…that reminds me…I have to do that tomorrow). After that we will decide whether to stay on this chemo or move onto an even more experimental drug. So next wednesday will be a big day :)
I’ve always taken art seriously. I mean….as a teenager, I was writing songs and poems that were representative of what was going on in my life. Later in life, I moved through many forms of art…the latest is photography. I haven’t really done much with photography on the art side. If I’m trying to provoke an emotion…its almost always just happiness. Most of the time though…I’m just busy trying to get a cute shot out of my daughter. So anyway… the most negative thing for misty over the last few days has been getting force fed a kilo of expensive and terrible tasting pharmaceuticals every day. And its not just once a day….I have to interrupt her potentially pleasant thoughts 6 times a day with more medicine to remind her that she is sick. Now, don’t get me wrong…the fact that she can’t speak, or has to carry her right arm with her left certainly remind her that she’s not exactly well….but nevertheless, its the medicine that’s been annoying her lately.
So I took a picture. I’m quite amazed at the amount of stuff we pump into her each week. This is one weeks supply. (oh and there are drugs she gets IV on every other friday as well)
But anyway…life has been pretty ok for the last couple days. The whole complaint about taking a zillion pills is really pretty trivial. Misty hasn’t gotten too much worse this week…I’m thankful for that. I’m actually thankful for a lot of things. So here’s a quick list.
- Misty is emotionally doing well. She’s encouraged and hopeful, more than she is discouraged and feeling hopeless (this has not always been the case)
- All the drugs you see in that picture are free….my new insurance is fantastic (federal blue cross blue shield). Oh…and that little round white pill on the very top…its a chemotherapy (for lung cancer….there aren’t too many options for brain, and misty exhausted them a while ago) and the month supply costs $4500. But again, its free for us.
- I have an incredible family (my family and misty’s family). We are so well supported…I couldn’t really ask for anything else.
- I have a really great job. My management has been so clear that I need to keep family as a priority over work. I’m out now, burning up my sick time. They have already requested advance sick time for me in case I need to borrow from time I haven’t even accrued.
- Misty hasn’t had hives in a couple months and the painful rash she has seems to be going away.
- There are over 1000 page loads of this webpage everyday. So many of you have reached out to me and committed to pray for Misty. So many others have sent cards and gifts. I’m so humbled by the outpouring of love and concern. Thanks….really, thanks.
Yesterday was a rather eventful day in our world. We went to Misty’s uncle’s wedding and then went for a couple hours of the reception. It was a bit much for Misty, but she really wanted to go and she says that she enjoyed it.
It kinda feels like we fast forwarded about 60 years in life. I’m having to carry her up the stairs, hold her while walking around the house so she doesn’t fall, and 2 hours of sitting in a wheel chair at a reception is all she can handle. But thats ok with me. Honestly, even in our current state….I love having her around.
And today was nice as well. Misty’s parents and sister came by for dinner. Misty’s mom is usually around in the days anyway. I am on leave from work, but with Olivia around, it makes caring for Misty a bit more challenging.
Happy Birthday to Andy Bova and Rob Green…
…and me. Yes, I’m an old man now (28). Today we had a visit from our good friends Scott and Ann. They brought by a gift for my birthday. I honestly, completely forgot it was my birthday until they showed up at the door. My life is a bit of a blur lately.
Anyway, back to the saga. I like this whole blog thing, cause the world gets to watch as my family wrestles with life, death, cancer, God, etc. I hope that along with garnering forces to join us in prayer, these posts help someone somewhere with whatever you may be going through. Now, for those of you who don’t know me as well, I’ve served in a pastoral role for over 4 years of my life. Until Misty’s cancer came back, I was in bible school as well while keeping my day job as an engineer. I say this to say that I have a good understanding of the bible, and a very comfortable understanding of Christendom. Nevertheless, in recent months…I have doubted many things. So if you are tuning in for the first time I wanted to give you some background. In the midst of doubting I have found peace. I think we all need to challenge what we believe a little bit more. Too often we take for granted everything we learned sitting around the table with Granda Margaret…we just expect it to be true. We need to “own” our faith. Hand-me-down faith is completely meaningless.
Anyway, enough of that. Here is the latest:
Physically, Misty is no better than a few days ago (can only say very simple words, cannot use right arm at all, has trouble walking and is very weak). I am greatly disappointed about this. If you read my last post, you should expect me to be disappointed. I’m in the process of reconciling God’s word with my experiences. This is a normal process for me lately. I’m looking forward to a nice theological post in a couple weeks. Yeah, so Misty is not any better – but somehow, tonight ends on an emotional high note. I asked misty how she was doing (the usual question) and she conveyed to me that she was ok. I have gotten this response many times, but tonight was a little different. Usually, its “I’m sick of this…but I’m gonna trust that God has it under control” – which by the way, is already a surprisingly good response for someone in her shoes. But tonight was different. I asked her if she was ok having to go through this and she said yes. It’s really hard for us to have conversations about anything other than logistical stuff, but I really felt like she was a bit happier. It was like she went from accepting it, to finding purpose in it. Life has become a little bit easier…
I also wanted to mention that I got an encouraging note from someone this week. His name is Stan. He explained to me that he went to a small group for the first time with my good friend andy bova (see birthday reference above) and they spent much of the time praying for misty. Well, Stan doesn’t know misty…but he is the doctor at Monmouth medical who reviews every one of her MRIs and works closely with Misty’s neuro-oncologist. So now he not only works on the medical side for Misty, but now he is on the faith side as well. I was encouraged by this. Its nice to have someone who plays both sides of the field:)
Oh, and I got a note from an old friend from college. He wanted me to know that he is the Program Director at the most powerful radio station in Maine…and they were praying for Misty on their morning show. That was another piece of encouragement. (thanks to Joe Polek of Maine’s Harbor of Hope, WHCF – 88.5fm)