That's my routine every time I go to eat.
I'm half way through my second round with these new chemotherapy drugs. The side effects are getting a little peculiar.
Every time I eat the first 30 seconds of chewing brings on sharp pain in the corners of my jaws. The neuropathy has effected my throat so anything cold feels like a million needles down my throat, and my hands and feet react to cold sensitivity as well. There are hiccups and burps that feel like a branding iron down my throat. The fatigue seems to be fairly heavy. I don't want to count the hours I've spent on the couch lately.
The toughest side effect right now though is appetite. Kendra and I started a very strict new diet that I'm very hopeful and optimistic will significantly aid in our treatment. However it also limits my options. Combine a limited menu with a serious struggle to want to eat and it becomes very difficult to stay nourished.
Food becomes utilitarian. I no longer eat for pleasure as much as I do for purpose. It's still a daily battle to choke things down. Gagging, coughing, and constant nausea are my routine every time I eat. Things taste decent most of the time, it's not that it's poor food. It's just plain old hard work for me to eat. A small bowl of soup might take over thirty minutes to force down.
My mission is simple, to eat.
It's not complicated. Get calories, maintain weight, and stay nourished are my outcomes. It's just really really hard to do this right now. You could say I'm in a "food rut".
Have you ever had any ruts in your life? A prayer rut? A bible reading rut? How about a church rut?
There are so many things about being a christian that we can over complicate in an effort to excuse our lack of obedience and self discipline. Maybe you didn't get a prayer answer like you wanted, someone at church offended you, or you're stuck in Leviticus in your daily bible reading schedule. It doesn't matter the circumstances, we still have to do certain things to stay healthy.
What about when it doesn't taste the same? "I don't feel connected to God right now", is a statement I hear from our college kids all the time. The next question is what are you doing to connect? Often the answer is very little. We expect God to grant warm fuzzies and divine revelations every time we grace him with fifteen minutes of effort. The real mark of maturity is will we give him more when we feel like we're getting less?
When I feel worst is when I need to eat most. If I'm not careful I'll only eat when it feels good and that doesn't work with a diet or spirituality.
I can't tell my body not to lose weight because I don't feel like eating, or my new diet is limiting, or that my mouth hurts to chew. It doesn't matter the reasons why, I still have to eat.
It's the same for you and I in our spiritual disciplines. It doesn't matter what's going on around us. Being a Christian is simple, it's just not easy.
Love God, love others.
What excuses are you leaning on right now? What side effects or symptoms are really distractions from obedience?
While you figure it out, I'm going to go eat a snack!
Tuesday, July 31, 2012
Tuesday, July 24, 2012
I am writing this update from the hotel dining room in Zion as I am waiting for Ryan to get his pump hooked up for the second time - he has already received the rest of the infusion this morning and afternoon. We met with our PA this morning and he was really pleased with Ryan's state of being heading into the new cycle. He told Ryan that in comparison to most other patients, Ry's rash isn't that bad (a point of view that perhaps my hubs doesn't agree with!). A few blood counts are low, but not low enough to withhold treatment. I am going to take the lab sheet home and see what foods I can get into him that will help bolster these counts!
We haven't yet mentioned it yet publicly, but two weeks from now is going to be a very big week for us. We are going to be in Zion August 6-8. Monday the 6th, Ryan will be getting a PET scan done, and we will find out the results on Tuesday in the afternoon. Wednesday he will be getting treatment and then heading home.
These scans are a very big thing for us. They will show the extent of the impact that radiation has made - these will be the first scans that have been done since April, when it was decided that radiation could have a big effect on his cancer. So naturally we are both excited and nervous about these. The good sign (physically) is that there has been virtually no sign of the same pain that Ryan had before the last scans in April. We are asking that if you could think to pray for us the next couple of weeks, please do so any time that we pop in your mind! We need peace and comfort - the weeks leading up to these events are very unsettling. We also are crying out to God for healing, for negative scans, for a miraculous healing - for deliverance. We know that we likely still have a long road ahead of us, but to have encouraging news would be such a shot in the arm!
And yet though we pray for good results, we pray also that God's perfect will would be done. We know and trust that He is sovereign, and once again we are choosing to submit to His will for our lives, no matter what that entails. We desire to glorify His name from the highest of mountaintops and the lowest of valleys. He is good. All the time.
Bring The Rain - MercyMe
I can count a million times
People asking me how
I can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain
So I pray
Holy, holy, holy
Is the Lord God Almighty
Monday, July 23, 2012
When I whine, it's almost always about something small or insignificant. For some reason I tend to handle the major issues in life in stride. It's the more trivial things that can trip me up.
This new chemo has evoked some whining...
I broke out with a "rash" that bears a startling resemblance to pretty bad acne all over my face and neck and head. It's not real pretty and its getting uncomfortable. My scalp itches but is painful to the touch, so you can't scratch it. My face is dry, cracking, and painful to the touch.
Add on top of that I've been pretty exhausted this week, for insurance reasons I'm unable to do my treatments from Muskegon and must make the trip to Chicago again tonight! All this adds up to me having a bad attitude this week.
I know, it's pretty weak to be upset about all this, when I really feel decent. No puking, no diarrhea, no pain, nothing severe, just inconveniences.
A couple years ago my washing machine started leaking. I discovered it because the carpet was wet all the way into the hallway. We're not talking about a little drip; it was dumping the entire load of water onto the floor. We almost floated out of our house. There was water in the crawlspace, in and under the carpet... it was everywhere!
I looked, probed, and problem solved. I pulled the dryer out of the bathroom and set it up outside on the porch and no leak! I ripped open the carpet, dug holes in the wall wondering if it was a leaky pipe. No matter how hard I tried I couldn't find the source of the water. Meanwhile we weren't doing a lot of laundry.
At my wit's end, I finally called the repair man. As he pulled off the shell and opened up the machine, we looked and watched and still couldn't find the leak. That made me feel better that a professional was struggling as much as I was until we discovered the problem...
Somehow in my diligence I overlooked the drain hose. It had not been pushed far enough into the drain pipe in the wall and so when the machine drained it's tub, the water basically went straight onto the floor!
How could I have overlooked such a simple solution? How could I not see the obvious? Why did I have to pay the repairman to come out and make me feel stupid?
I was looking at the wrong thing. I was focused on the actual machine and the pipes in the wall. I never thought about the connection of the drain hose to the pipes. That was too simple, too small to go wrong. My focus was on the wrong thing.
When a crisis hits, our first reaction is often to pray. We reach out to our compassionate and merciful father as a child does. The need is great, and we don't think we can get through it so we cry out for help.
What about when we stub our toe? Why do the little things often trip us up when we can respond so well to the big things? We're focused on the wrong thing. My attitude problem this week didn't come because of acne and fatigue. It came because I was focused on my circumstances and not on my creator.
Proverbs three gives me a convicting commandment, I'm told to submit to God in "all your ways".
5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.
I wish sometimes I could slide on the small stuff. Unfortunately it doesn't work that way. "All" leaves no cracked doors for me to sneak out of obedience.
As you go about your day, make sure you've got the right perspective. If you find yourself irritated with your circumstances, maybe you need to look in the mirror before you look outward.
Sunday, July 15, 2012
I admit that I'm not opposed to my toddler watching a bit of TV every now and then.
Okay, maybe almost every day.
You see, since summer vacation started, Colton and I have started a new rhythm. We generally wake up between 8 and 9, get breakfast together, I make coffee, and then we snuggle up on the couch to watch a recorded episode of "Sesame Street" together. Generally we do not watch the entire episode. After all, if it's a segment of the show that does not have Elmo in it, Colton isn't interested. Generally we will watch the opening segment if Elmo is in it, but we usually fast forward through "Abby's Flying Fairy School" and Bert and Ernie's segment. No Elmo = No Dice.
However, we regularly watch "Elmo's World" together. It's so pathetic that I can sing all of the words to the intro, "Elmo's Song", "Elmo's Ducks", and "I'm Elmo and I Know It". Colton just loves that little red monster. I don't get it, but at least he isn't into Spongebob. As a matter of fact, one of my goals as a mother is to make sure that my son does not even know who Spongebob is.
Anyway, I digress. I love this time with my son, watching the high-pitched red monster and his goldfish Dorothy on the screen. I get to smell my boy's hair as he sits on my lap, sip coffee, and point out the shapes, numbers, colors, and objects on the screen. If my son is going to watch any TV at all, it's going to be interactive - NOT a babysitter. If you're not familiar with "Elmo's World", it is based around the premise that Dorothy and Elmo want to find out more about a particular subject - how to get dressed, how to take care of pets, what are fish like, how to play drums, etc. One of the first things that they will do is consult their friend Mr. Noodle, who lives behind a curtain in Elmo's World.
|Mr. Noodle, Elmo's friend and consultant|
I cringe every time Mr. Noodle comes on the screen. Mr. Noodle is kind of a dunce. Okay, not kind of. He's a MAJOR dunce. If Elmo asks Mr. Noodle how to walk like a monkey, Mr. Noodle will misunderstand him and try to walk like a chicken. It's just ridiculous. I'm sure that preschoolers love it, as Mr. Noodle is definitely very silly. Eventually the off-screen voices of four-year-olds teach Mr. Noodle how to do the correct action, and all is well. Colton thinks that Mr. Noodle is very funny.
Now, I'm not knocking on Mr. Noodle. He serves his purpose in teaching preschoolers about the right way and wrong way to do a particular action. I just think that Elmo and Dorothy should have learned by now that Mr. Elmo is probably not the best person to consult when they have serious questions such as how to tie shoelaces. This is crucial business, people. Get a clue! :)
But you see, I'm not so different from Elmo and Dorothy, as I am not always known for seeking the wisest of counsel when I am faced with a problem.
Have you ever had a problem that you tried to fix on your own? I think we all have been guilty of this at some point. My husband says that I am possibly the most fiercely independent person that he's ever met, with a thick skull to boot. I regularly reject wisdom and guidance from people that are probably a lot more attuned to God's wisdom than I am because I am very wise in my own eyes. I regularly reject the notion of asking for God to give me wisdom and guidance because I have it all under control (ha, ha, ha). I would rather rely on the opinions of the Mr. Noodles of this world sometimes than God's wisdom and am often guilty of running to my own wisdom or Mr. Noodle's wisdom first (figuratively, not literally).
Did you notice what God's word says about asking for wisdom or relying on the Lord's understanding?
- "This will bring health to your body and nourishment to your bones."
- "...when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind."
Thursday, July 12, 2012
Lawn to mow,
Arena to work up,
Horses to ride,
Writing projects to work on,
Blog posts to write,
Presentations to create,
Chores to do,
Trips to plan,
Speaking engagements to prepare for,
This is hardly the end of my to-do list.
During just about every cycle I start to feel very overwhelmed with my perceived task demand. I look around and it feels like the amount to do grows daily while I become more and more unproductive. Mentally and physicially it is intimidating. I struggle to focus on tasks and projects and I certainly don't have the physical ability to complete many of the projects and chores.
So what did I do today?
I came home from work early and napped, then I laid on the couch watching irrelevant TV shows feeling sorry for myself because I had so much I wanted to do but can't.
What did I do tonight?
I sat on the porch and watched my son and my wife and my dog play with a tennis ball. For a moment I couldn't see the unmowed grass, or the weeds in the arena. I forgot about the proposals, and websites to build, and phone calls to make. I stopped worrying about not having blogged in a while and feeling guilty.
I just sat and smiled.
Time feels so constrictive at times. I have so many things to do and it is easy to look at time as the limiting factor in my ability to accomplish things. Honestly, I'm the limiting factor. There's only so much of me to go around. Time is constant.
I can't get it all done. I have to choose. Tonight I chose to be still and thank God for a simple moment watching my family.
The best part of my day today was my son running into a meeting I was in at work to give me a huge hug! That is living in High Definition.
It's been three days since I started the new chemo regimen. I was able to go to work Tuesday and Wednesday but started feeling weak last night. I went in today but had to have Kendra come get me to bring me home. I'm struggling with fatigue and a foggy head. I get headaches and have a difficulty focusing.
It's also been three days since I became a "vegan". I'm fully committed to it, but this is a pretty radical lifestyle change for me. There are some ups and downs in trying to figure out what my new menu includes and how to manage it all. Please pray for Kendra and I as we keep learning more.
Sunday, July 8, 2012
Holy cow, did those two weeks ever fly by! Ryan and I have had an incredible time together in the interim between radiation/chemo and the first cycle of FOLFOX and Erbitux (which number cycle this is, I have no idea...I've totally lost count). We are headed to Chicago here in a little while so that we can do this cycle there. We had planned on doing the treatment in Muskegon (near our hometown), but there was a lack of communication from Chicago to Muskegon, and then one of the drugs was rejected by the insurance company when Muskegon tried to clear the drugs through insurance. Chicago is confident that there will be no billing issues with them, so we're on the road again... Hopefully, this will all be cleared up two weeks from now so that we do not have to go to Chicago AGAIN and we can just go to Muskegon.
I have a long list of prayer requests to share with you:
First, I'm fearful, friends. I know of two people currently going through FOLFOX that are doing just fine with the side effects (as a matter of fact, I recently did an all-day walking tour of Washington DC with one of them, and he held up quite well), but I am still scared of Ryan not doing well. One of the FOLFOX drugs is Oxaliplatin, which has quite a few side effects and is a cousin to Cisplatin, the ugly drug that Ryan was on last year that caused so much nausea and numbness for him. PLEASE pray for minimal side effects.
Second, we are mulling over, praying about, and seeking God's wisdom over three pretty major decisions that will have lasting impact on our lives. Please pray for clarity and wisdom. I can't share a ton right at the moment, but please just pray that God's will would be done, and that we would be guided by Him to make wise decisions. We are very excited about all three possibilities.
Third, our sister-in-law is having a baby tomorrow, our third nephew! Please pray for Jeremy, Megan, and baby boy Prudhomme - that they would be healthy, safe, and happy. They live in the Dallas area.
Fourth, starting tomorrow we are making a big lifestyle change. After having researched and been slapped across the face by some pretty compelling research and anecdotal evidence, we have been explicitly reminded by God about the importance of healing through nutrition. This has nothing to do with our philosophy on eating animal products (Heaven knows how much we both love dairy and meat), but we are going to become essentially a "vegan/organic" family. This is going to be really challenging for me as I am a typical Midwest young wife, and Ryan is a typical Midwest husband - I make meat and potatoes, he eats meat and potatoes. We need to ensure that we are getting enough protein into his system and that he can maintain his weight, but we are confident that this is where He is leading. If you run across Ryan and he seems grumpy, it could be that he is going through steak withdrawal. Be kind. :) Oh, and share delicious, easy vegan recipes with me if you have them!
Well, I think that covers the gamut of where we've been at. We love you. We continue to covet your prayer and your support and encouragement - this cancer journey is a long one, and at times is a very lonely one. We so love your comments, cards, and words of wisdom. Thank you for walking with us!