A Strange Day

Posted by wendy on May 2, 2011

I went to bed last night more anxious than I had been in a long time. It was one of those nights when no amount of prayer could slow down my mind, and though I slept, rest was elusive.

At some point I realized that I had been actively avoiding this week in my mind. Today Emmett goes for a CT scan and then Wednesday we start chemo, though we still haven’t decided what course to take. We’re not ready. In some ways this month off has been a blessing. Though we’ve had appointments and procedures, the break from chemo has allowed us to breathe a little easier. Chemo has a way of making you a mental prisoner as well as a physical prisoner of your body, and in many ways we both feel like Emmett is only beginning to be himself again. At the same time, Emmett hasn’t bounced back from the second chemo as much as he did from the first one. The second course of chemo was more physically demanding. Emmett now really looks like a chemo patient, or as he put it, “the perfect extra for a holocaust movie.”

None of the doctors agree on the next line of treatment. It isn’t that one doctor is right and the others are wrong, but no one knows which combination of drugs is more effective because the research is so thin. A general lack of research combined with the typical genetic variations of tumors means that our next choice of chemo is basically a crapshoot because what works for one person may not work for another person. Most studies show that a significant portion may not respond, a significant portion show some response, and one or two people may show an abnormally “good” response. As of yet, though, there is no basis for determining how a person is likely to respond. Even a good response, which is generally based on tumor shrinkage may not mean a longer or a better quality life, in fact it could mean the opposite – but the research isn’t conclusive. That phrase seems to be the only constant, “the research isn’t conclusive.”

Should we maximize tumor shrinkage or minimize side effects? Do we aim all our weapons at once and risk blowing Emmett to smithereens or take them one at a time and risk less effectiveness? Since there is no research and everyone has a different opinion it sort of feels like we’re having to be our own doctor by choosing which opinion to follow. Reading potential side effects is much different now that we’ve experienced a couple different chemotherapies. Medical phrases like neutropenia or hypomagnesemia take on new meanings now that we have tangible memories of how they affect Emmett.

So pray for us this week. We still haven’t made any decisions. There aren’t any great options, so we’re praying for peace as we move forward. The only real cure is a miracle from God, so we continue to pray while we rejoice for the time we have together. We’re thankful for a beautiful spring and lots of time to enjoy each other. May the Lord grant you the same joy in the little things of life today.

Logo Love

Posted by teamcaptain on May 4, 2011

The Team Emmett Board is hijacking the blog for a post once again!

Just a quick note to say that we now have Branding Standards that we have put together for anyone wanting to use the Team Emmett name and/or logo. Since we are happily on our merry way in becoming an official non-profit organization (waiting for the government to approve paperwork is such a swift process, you know), we want to set standards and good habits in requesting that the Team Emmett brand be used correctly and consistently to uphold the integrity of this brand. As Team Emmett continues to grow and more people get involved, we want to ensure that the name and logo are always recognizable, uniform, and visually excellent.

This also appears on the Help Tab on the website – if anyone is interested in using the TE name/logo for any reason, please email help@teamemmett.org and we will send you the official Branding Standards Guideline document.

If I may also use this moment to ask for prayer for Emmett and Wendy this evening. We can most likely be looking out for a post from one of them soon with more details, but the results from today’s CT scan were not so good. Please pray for peace and rest in their hearts tonight, and for healing like we know only our great God can give.

Brief Update

Posted by wendy on May 4, 2011

I’m curled up next to Emmett tonight. It’s the first night in a long time that I’ve spent in our room. He sleeps so fitfully that I’ve taken to sleeping in the guest room so that I have the energy to work and handle Quinn, the house, and doctor visits. I snuck out of our room earlier this evening after he fell asleep, and he woke in a panic shortly thereafter taking several minutes to find his bearings and calm down. His anxiety levels have been pretty off the charts today, not surprisingly, after the meeting with the doctors.

The CT scan revealed continued shrinkage in the liver tumor, but the lymph node outside the stomach continued to grow, and there are a couple spots on his lungs now. The news was really hard on Emmett. He was eager to have a few more days off since he was only just beginning to feel good. I am worried that this news sent him reeling, and he may not recover in time to enjoy his extra days off chemo. We’ve pretty much decided the path forward, so now we’re going to spend the next few days getting some more fluid drained off his lungs and prepping for chemo.

Pray for Emmett’s anxiety level to decrease. Pray for him to take in more nutrition. Pray for us both to sleep. And pray for a few really good days before we dive into chemo on Monday of next week.

Tomorrow

Posted by wendy on May 8, 2011

Tomorrow (Monday) we move forward with chemo. It’s been a lousy weekend for Emmett, so we’re anxious to get started. Bust out your Team Emmett gear if you have it and definitely keep us in your prayers as we begin to navigate a whole new chemo.

A New Round of Chemo :: a detailed glimpse

Posted by emmett on May 13, 2011

It’s been a weird ride lately. Last week I went in to drain fluid of my lungs, allowing me to breath easier, thus sleep better, thus have increased mobility and so forth and so on. The downside is the next few days were crummy for me. I don’t know if it was as a result of the two procedures done back to back, or if the cancer was digging in deeper, who knows.

We started Chemo Monday, which had its own exciting rabbit trails to follow. There was a period where my speech was slurring, and my head was feeling dizzy, a lot. It caused us to pause chemo and consult with the docs before we started again, just to make sure it wasn’t something super serious. I was freaked out, naturally.

Since taking chemo, it hasn’t progressed as we were expecting, or as I was expecting at least. Tuesday, I had some residual leftover side effects from some steriods they gave me monday. This meant I had an appetite, and I was able to get out and do some things tuesday, which was a nice treat! Wednesday and Thursday both were days unto themselves. They were mixed with good feeling periods, really sleepy periods, and really crummy periods. It hasn’t been as predictive as we thought, having a few days down, a few days up, etc. etc.

The plus side to all of this is that things are a bit nicer than we would have originally thought, a little easier. However, I keep waiting for the other shoe to fall, for the rest of the things to come tumbling down. Needless to say, it messes with my head space a lot, it messes with how I plan out my day, or how I allocate what energy I have for what tasks are before me. It can make one’s head run in circles!

So here we are, Friday afternoon, and I’m still playing the same game. planning on eating something, trying to figure out what to do with my day, and trying to guess what the weekend will look like. How much do I push myself (being it the first time on this chemo) how much do I take it easy to see how things play out? I just pray and hope that over the next couple of weeks, we are able to stay out of the hospital, and spend time at home, recouping, and living life together as a family, and hopefully having more good energetic days than bad days.

Unexpected junk

Posted by emmett on May 18, 2011

So, It’s not quite 8 am wednesday morning, I’ve been up for about 6 hours now.

The last few days have been unexpected to say the least. I have been laid up, sleeping some, not sleeping lots, and I have lots of intestinal pains, constipation, diarrhea, etc. etc. It’s been painful. It’s also been slightly depressing for me, to be laid up so much these past few days, when things before then were looking slightly up, as far as getting out of the house, and possibly being able to do some things around the house to help out a little bit more. Instead, it’s all gone the other way as of late. I have to admit that mentally, it’s exhausting, so exhausting that the clarity I was having at the beginning of this chemo, has turned into chemo fogged brain.

It’s been rough with trying to keep nutrition on the upswing as well. Mainly because when I eat, it has to go through my intestines, which is where I have been having pain and difficulties. It’s been weird because I have cravings for food, but at the same time a strong reluctance to eat, thinking of how it will hurt later, or in the middle of the night. so needless to say, it’s been hard to get food in me. I won’t lie. I’d like to think that I am doing better now overall with getting calories and protein in me, (even if through lots of supplements) than I was at one point, but I know that it’s not tons better, and with the latest turn of events, it makes it harder to try to keep things on the up and up with my nutrition.

Anyways-
That’s where things have been as of late. I’m mentally and physically tired of being sick and laid up. It’s easier to be ‘sick’, if I can get out of bed and do things, take in food and beverage, and contribute a little to things around the house. I’m hoping for things to trend upward over the next few days. This is week two of the three week cycle. So I get one more week (next week) before we have to go back in for the next round of chemo. So please pray for me, for my mental state, to keep out thoughts that can lead to depression or other self defeating attitudes. Also please pray for me to know when to push myself, to take advantage of even marginally good days, so as to capitalize on as much time as I can with wendy and quinn. and as always, thank you, thank you so much for your prayers, for your notes of encouragement, and for continuing to walk alongside us as we struggle though this.

Impressions

Posted by wendy on May 26, 2011

Sorry I haven’t written much lately. With school wrapping up and being sick, it’s been enough for me to just make it through a day lately. I also haven’t written much lately because I don’t really know what to say. I seem at a loss for words, and I feel more like I’m storing up images as I walk through the days, like living in an impressionist painting. So I thought I’d share some of the impressions I’ve had lately.

I took Quinn to see Gnomeo and Juliet recently. It’s cute. A very liberal interpretation of Romeo and Juliet as if they were garden gnomes. There’s a scene where the gnomes are talking to a flamingo (the yard ornament variety, of course), and they give the back story on how the flamingo lost his lady flamingo. I was holding Quinn by that point in the movie, and he started sobbing. It occurred to me that he might really understand things more than I realize. To see him so broken by someone else’s sadness (can you call a flamingo a “someone else”?) was touching. It’s a small glimpse at how God uses illness to shape our character.

And then there were a few funny days at work where people I don’t see often kept checking on me. I am blessed to work with people who will ask the difficult questions in a way that is gracious and loving, but I did chuckle after it happened two or three times because I felt like I was the subject of some kind of intervention.

I’ve been reading The Ascent of Mt. Carmel by St. John of the Cross. the last half of this book is more commonly known as The Dark Night of the Soul which I read years ago. The first part (rarely in print nowadays) is about the need to be purified from our physical lusts like greed for money, power, things, etc. It’s not surprising that the first part isn’t published much in our culture, but he puts forth a beautifully simple yet enormously convicting argument about how we cannot truly love God if our souls are attached to physical objects. And the language. Man, people just do not write that beautifully anymore. You just feel cleaner and smarter when you read words that beautiful.

And then there are the impressions of Emt.

Tonight I wondered what that weird sound was in the movie Quinn was watching. It wasn’t in the movie. It was Emmett hacking, coughing, and throwing up. That sound is the constant background noise to our life at home. As we approached the beginning of this chemo, Emmett kept wanting to take more time to recover from his last chemo and have some good days before starting a new chemo. But as we kept postponing, it occurred to me that Emmett wasn’t going to recover from the last chemo because that probably wasn’t making him feel sick anymore, it was probably the growing cancer. I was glad to start chemo, and though this chemo has been easier, he throws up a lot, and this chemo messes with his bowels more than most. As if he needed another complication to eating, he often can’t keep nutrition in when he is able to take some food or supplements. He is doing a lot better about taking nutrition, but either the chemo or the cancer is preventing him from absorbing a lot of it. And yes, we’ve researched everything and talked to everyone we can find. This is the struggle when you have a GI cancer and you have been dumping poison in your body for over a year. Medicines have made us think that there is a simple solution to everything, but it is not that simple when you are talking about cancer.

I have almost enjoyed being so wrapped up in school because it is very hard to be at home right now. Emmett just doesn’t get out of bed. He tells me things like, “I’ll help do such and such tomorrow,” or, “I’d like to go out to the wherever.” But when it comes down to it, we never make it to tomorrow. If he hasn’t slept well, he tells me, “I just need to get some good sleep.” If he has slept well, then he says, “I’m sleeping so well that I just want to keep sleeping.” So he stays in our room most of the day with the door closed because it bothers him when Smudge clicks her toes on the floors or Quinn is too loud. I sit with him when I can, but I’m often forced to decide between being a good wife or a good mother, so that I don’t get to do either job to my satisfaction.

I get a lot of ambivalent answers from Emt, a lot of “whatever you want” or “it doesn’t matter.” I get the strong impression of weariness, and that is heavier than any other burden – more than the vomiting or sleepless nights, more than the not getting out of bed. He is worn thin, physically and emotionally. The change of seasons has made his weight loss more obvious, but not feeling up to do things has gradually sapped a lot of his drive and determination.

So these are some of my fragmented impressions of our life. there is no grand theme or moral, just polaroids of our life with cancer. It is a big struggle for both of us right now, so we’d appreciate prayers, and lots of them. Thank you for continuing on this journey with us.