Saturday, December 29, 2012
Wednesday, December 26, 2012
- Minimal growth - some of which could actually be inflammation from radiation
- Great bloodwork that showed his bilirubin continues to decline, everything is stable
- His pain is likely irritation from the radiation still, five weeks later (his tumors are on the outside of his liver, so radiating that area would cause the lining of his liver to hurt and be irritated)
- The radiation treatment appears to have been effective, so we're going to do another one on another nearby section of his liver sometime the week of January 7th
- NO MORE CHEMO FOR AT LEAST ANOTHER MONTH - HALLELUJAH
- The next chemo that he will do is not going to cause him to lose his hair - yes, that is totally my issue, but I like looking at Ryan and not seeing cancer written all over him. My issue, yes. I own that.
- CT showed his lymph nodes are stable and show no changes. That radiation he did this summer must have really caused those things to shut it down! Yes!
- The itchiness he's been feeling lately is not likely caused by his cancer, according to his oncologist - due to normal bloodwork and the position of the tumors on his liver. Ryan has always been sensitive to dry winter air, but lately the itchiness has been intense and he's been concerned.
Tuesday, December 25, 2012
Monday, December 24, 2012
|Forgive the bright light. The sun is shining here!|
|The little Santa bell from Playa del Carmen.|
|"Baby's First Christmas" ornament from 1984.|
|Detroit Tigers baseball (naturally)|
|Christmas really brings out the magnanimous nature in me - I even brought out the Western ornaments.|
|...including this kind of creepy little guy.|
|Handpainted treasures from our son. He was kind of going for a Claude Monet look.|
|A little latte ornament because one of my students from last year picked up on the fact that I'm in love with Starbucks.|
|Bare branches. Note the plethora of pine needles below.|
Sunday, December 23, 2012
That's a statement I've made many times.
Well here's a new one. I'd rather be in pain than itchy! For the last six weeks I've had persistent pain that has had varying degrees of severity. At times early on it was pretty intense. Now it seems to come and go and I mostly feel it when I take deep breaths or bend the wrong way. After tests and more tests we all feel that this pain is a rare side affect from the Therasphere radiation treatment.
I can handle pain for some reason. I've had horses flip upside down on me and kept working. I've been kicked, punched, clobbered and more through many years of sports. I've broken bones, twisted ankles, and torn ligaments. The worst pain I ever experienced by far was pancreatitis due to a reaction from yet another medical test. That's another story though.
Every year during the Spring, Fall, and periodically through the winter the itchiness sets in. I'm not talking about a fleeting itch that a simple scratch can absolve. I'm talking about deep, burning, persistent, nerve-wracking itchiness. Sometimes it's all over. My thighs, belly, arms, legs, scalp and everywhere in between. Lately it's been more concentrated in my lower legs and feet.
This is concerning for two reasons.
One, it could be a symptom from the cancer called pruritis. The bile building up in my body causes me to itch, become jaundiced and more. It could just be the regular battle I do with extreme dry skin exacerbated by all my treatments. Either way, it's impossible to tell and so you always wonder.
Two, it's driving me nuts. I hate being itchy. It keeps me up at nights, wakes me up in the morning, distracts me through out the day, and overall is a constant nemesis. It is a battle I have to fight against a faceless enemy to chicken to show its face. Instead it torments me from afar. The more I scratch and dig the worse it gets. No amount of medicated lotion cures the problem. Don't even get me started on how insecure I am about being a cowboy with softer skin and smoother hands than a Johnson baby soap model!
Kendra asks me all the time if I'm afraid of the potential future effects of this cancer. If I'm in pain now, am I afraid of more intense pain in the future? I'm really not. I have always been able to handle pain, and there are things to help with that.
You know what I'm afraid of? Non-stop, intense, make-you-want-to-burn-your-own-skin-off itchiness. There's two reasons why.
1. I hate being itchy!
2. It makes me so grumpy that I could give Walter Matthau a run for his money! It tends to drive me nuts. I'm edgy, irritable, short, and frustrated. If this is just the beginning, I'm afraid of the test of my character that it will be. Do I have the seasoning to face this foe with the grace and charity that my family deserves? I sure hope so. I know I won't be able to do it out of my own strength.
I've really been thinking through the words "Strong" and "Courageous". This was the theme of the Christian camping conference I just came home from and I can't get it out of my head.
I'm going to expand more in a different post but basically I keep coming back to the thought, strength comes through surrender, courage comes through faith! It doesn't matter what it applies to, facing cancer or wanting to scratch my eyeballs out.
So here I go God.
I surrender my physical comfort to you. Should you in your infinite and perfect wisdom allow or place me into a place of temporary or permanent displeasure I will trust that you are God and that is where I'm supposed to be. God if I really love you and trust you then even though I'm afraid of the future and what it might mean, please give me the faith to obey you with my heart and my spirit. Please give me the grace to face the future no matter what it is in a way that honors and blesses you. I pray that those around me would be encouraged by my heart condition and not provoked, discouraged, or pulled away from you. God transform my character during this process. Teach me to manage my emotions and to not let my physical conditions affect my spiritual and emotional state of being. I pray You would remove this from me, but more than that I pray Your will be done. Thank you for all the blessing I do have. Thank you that twenty months later I'm really only complaining about being itchy. I don't deserve any of it, and yet you are a giver of good gifts. In Your name, Amen.
Wednesday, December 12, 2012
It's been wonderful.
Now I'm ornery! Why? I just found out today that we're going to be getting scans on December 26th. We knew they were coming but hadn't been able to pinpoint the date. Now I know, I'll be driving to a hospital to get scans and go through my least favorite part of this journey... on Christmas Day.
I'm not usually one who gets too hung up on holidays having to be celebrated on a certain day. For some reason this just isn't sitting well with me. I've been having the best time with my family ever lately and I am so excited for a little more quality time over Christmas. The last thing of all time I want to do is drive to Chicago to go to a hospital.
I'm so mad that Colton is going to spend Christmas night in a hotel. This combined with insomnia lately and not feeling too great today physically, have all led to me being a grouch tonight.
Here's the worse part. I'm mad about losing quality time with my family, and my response was to be a grump to my family???!!!!
What's wrong with me?
Can you relate to this one at all? Why is it that we often take out our frustrations on the people we love the most who may have nothing to do with the circumstances?
There's a lot of things I hate about cancer. I hate how it steals things from my life. I hate how it makes me feel violated and robbed. It intrudes into areas that I've tried to protect and keep "normal". I can't hide anything from it. Two summers ago we were blessed to spend a week at an incredible Lodge that friends allowed us to vacation at. Instead of totally relaxing, I was puking my guts out and had my worst cycle yet. Again, all I wanted was family time, instead I got more cancer crap!
Cancer invades like a plague. It looms over every part of your life. Like a dense fog that overtakes everything in its path, sometimes you just can't avoid it.
Sometimes it just plain makes you ornery, and that's okay. To be ornery. Unless you're a stepford wife or a robot, you're going to have emotions. What do you do with them though?
I crossed the line when I took things out on my family. Emotions are powerful. The same high I've been riding the last couple weeks was just as emotionally driven as the low I experienced today. If we rely solely on our emotions we'll either think too highly of our selves or before too long we'll come crashing down to reality.
It's God's truth that we must cling to so that our emotions don't betray us.
One of my favorite ways to praise God is to remember the names of God. My grandmother taught me this.
ELOHIM......Genesis 1:1, Psalm 19:1 meaning "God", a reference to God's power and might.
ADONAI......Malachi 1:6 meaning "Lord", a reference to the Lordship of God.
JEHOVAH--YAHWEH.....Genesis 2:4 a reference to God's divine salvation.
JEHOVAH-MACCADDESHEM.......Exodus 31:13 meaning "The Lord thy sanctifier"
JEHOVAH-ROHI......Psalm 23:1 meaning "The Lord my shepherd"
JEHOVAH-SHAMMAH.......Ezekiel 48:35 meaning "The Lord who is present"
JEHOVAH-RAPHA.........Exodus 15:26 meaning "The Lord our healer"
JEHOVAH-TSIDKENU......Jeremiah 23:6 meaning "The Lord our righteousness"
JEHOVAH-JIREH.........Genesis 22:13-14 meaning "The Lord will provide"
JEHOVAH-NISSI.........Exodus 17:15 meaning "The Lord our banner"
JEHOVAH-SHALOM........Judges 6:24 meaning "The Lord is peace"
JEHOVAH-SABBAOTH......Isaiah 6:1-3 meaning "The Lord of Hosts"
JEHOVAH-GMOLAH........Jeremiah 51:6 meaning "The God of Recompense"
EL-ELYON..............Genesis 14:17-20,Isaiah 14:13-14 meaning "The most high God
EL-ROI................Genesis 16:13 meaning "The strong one who sees"
EL-SHADDAI............Genesis 17:1,Psalm 91:1 meaning "The God of the mountains or God Almighty"
EL-OLAM...............Isaiah 40:28-31 meaning "The everlasting God"
(taken from http://www.smilegodlovesyou.org/names.html)
Regardless of how I feel, when I remind myself of who the God I serve is, my faith is encouraged.
Regardless of where I will spend my evening Christmas night, or what tests, stress, and anxiety await me the next day, my God is still; the God of the mountains, the Lord my shepherd, and the everlasting God!
Sunday, December 9, 2012
Green leaves, red leaves, no leaves, little leaves, green leaves, red leaves, and now no leaves again.
And here I am, still learning the same lessons over and over again. I think that I am probably causing my Heavenly Father to facepalm several times a month - "Will this girl ever learn?"
And the answer is, no, probably not. Even though we (Christians) continue to grow and stretch and become mature in our faith and more Christlike, I think we all have moments where we backslide or forget who is boss. At least, I hope other people experience moments like that - anyone? Anyone?
It seems like lately, the Lord has breathed three words into my ear.
Even though I don't like what God has placed in my life, even though He has asked me to do some tough stuff that I didn't want to do, I still have had to learn to live my life with joy in spite of that. Consider that Paul tells us:
Dear brothers and sisters, when troubles come your way, consider it an opportunity for great joy. For you know that when your faith is tested, your endurance has a chance to grow. So let it grow, for when your endurance is fully developed, you will be perfect and complete, needing nothing. James 1: 2-4
I have learned that joy is not an emotion and not akin to happiness. Joy is a lifestyle. Joy is being thankful for what we have, and it is a submission to the Lord's will. It is an acknowledgement that despite pain sometimes entering our lives, despite disagreeing with the nature of the task at hand, that God's plan for our lives is always good and always best. When I choose to live my life with joy, my attitude is one of thankfulness and peace, not bitterness and discontent.
It is a far cry from being able to write a blog about the three themes in my life, and actually living them. Every moment that I think I've arrived, the Holy Spirit seems to shine a giant spotlight on another area of my life that needs polishing and cleaning up. I am a total work in progress, but grateful that the Lord considers me an object worthy of his cleaning rags.
Friday, December 7, 2012
Here's the catch though, it's not the people or the question that bothers me. I actually really feel cared for when people ask how I'm doing. Many people apologize before they ask and there is really no need. I don't mind you asking.
I'm also very comfortable talking about myself and my condition. I don't have a problem discussing my medical experiences, treatments, and options.
So what drives me nuts?
The answer, I can't answer this question. It's getting steadily harder and harder to try and share how Kendra and I are doing. Physically is a simple answer. It's emotionally and personally that is almost impossible to describe. So I get frustrated not at you or the question, but at me and the answer.
Here's why it's so hard. The answer is complete opposites most of the time. I'm doing great and terrible all at once. I'm healing and I'm dying all at once. We feel an indescribable sense of peace and God's grace and also cry into each others arms during moments of fear and terror.
For example, Kendra and I may drive down the road and see a house or a condominium and start having a very casual conversation about whether she would want to live in a condominium if I die. Five minutes later we might be talking about where to take our grandchildren on vacation.
I can go from feeling closer and more intimately connected with Kendra to irrational emotional outbursts and a hard heart from day to day.
The longer this battle wanes on the better and worse we are doing. The pressure is still very real, and for Kendra the grind of living life, working full time, being a mom, a caregiver and more are overwhelming at times. For me due to the side effects I continue to feel further removed from the person I always used to be.
So how do I answer the question? To answer "great" or "terrible" would only be giving half the answer. I can't figure out how to describe this duality of emotions though. So I'll probably continue telling folks that I'm doing well but it is a daily battle.
So please don't stop asking me (or others in my situation) how I'm doing. I appreciate your concern.
But know that sometimes, it's the most difficult question of all.
And if the answer may not make sense to you, perhaps you'll know why.
Monday, November 26, 2012
Sunday, November 25, 2012
However the jaundice changed things again so after calling CTCA for advice we headed back to the ER tonight. My blood work came back the same or better on all areas as yesterday. There is no infection. So they did an ultrasound to see if there was anything noticeable in the bile duct, gull bladder, or liver areas. If there was that would indicate something that needed to be addressed urgently.
The ultrasound showed nothing out of the normal. So in conjunction with the Dr. at CTCA the ER Dr. discharged us still thinking it's rare but possible all of this has been due to complications from the Theraspheres. It could also be related to changes in my cancer. That would be more worrisome.
We are obviously praying this has been a long scary weekend but nothing more than that. We will consult with my regular oncologist at CTCA to see how they advice us to proceed. Again, I feel much better, my blood work was not alarming, and neither was the ultrasound. However we still haven't done a cat scan due to the radiation which would give us the most information about the tumors.
Please pray for my family. It's very difficult for them to have all these unknowns, some of them potentially very serious and nothing they can do about it. I have no idea what the next couple days look like. I will know more once I talk to my Dr. tomorrow. In the meantime we will keep taking things a day at a time.
Saturday, November 24, 2012
We are back home after a (thankfully) short trip to the ER. Essentially, we didn't get much news, but our ER doctor and CTCA doctors think that Ryan's pain is likely a reaction to the treatment. That's not necessarily normal, but after running tests (all which showed nothing of concern), it appears that is the most likely explanation. Also, since his pain could possibly even be attributed as a muscle strain/spasm in a normal, healthy person, there is even a possibility that he may have tweaked his side. Ironically, we were almost in a car accident on Wednesday just a short time after his procedure - someone cut in our lane and I had to slam on my brakes after they did the same thing right in front of me. We slid back and forth and came extremely close to hitting them. Ryan may have braced himself and it wasn't too long after that near-miss that he started to feel really poorly.
So, since blood work seems to be nondescript and none of the doctors seem up in arms about this pain, we are not going to be alarmed, either. We are grateful for your prayers and covet them in the coming days as Ryan tries to relax and manage his pain through ice, heat, and anti-inflammatory drugs.
We love you all.
Thursday, November 22, 2012
This is a day to remember what the Lord has done for us! We are grateful for His provision and his mercies and since last year, we have tried to live each day with Thanksgiving. (See this previous post.)
Yet today is a concerning day. I write this post from a Marriott in Kalamazoo - another day, another hotel. We came here last night to rest before our family's Thanksgiving dinner today in Gull Lake. However, Ryan has been having increasingly concerning symptoms, most notably intense pain. We are not sure why the pain is here. He has had slight, intermittent pain throughout his whole journey, but not this prolonged and not this severe. He literally can hardly breathe or move. We are unsure whether or not this is cancer metastasis, or simply irritation from yesterday's procedure. We are praying for the latter. We are also praying for wisdom.
We will keep you posted, but in the meantime - enjoy your Thanksgiving and please pray for us!
Wednesday, November 21, 2012
Tuesday, November 13, 2012
Here's another one many of you were praying along with us.
The Theraspheres radiation treatment is now scheduled for next Wednesday the 21st! Which means we'll get the treatment before Thanksgiving. Things have moved much faster than what we were told was possible. I think we all know why.
I wanted to give you all an update and thank you again for your prayers.
Monday, November 12, 2012
We are waiting to hear from scheduling to see when his actual Y-90 treatment will take place: maybe as early as Thursday or Friday this week, perhaps Monday or Tuesday next week, or perhaps even the day after Thanksgiving. Is it wrong to drop my husband off at the hospital and then go hit up the Black Friday sales? (I'm completely kidding.)
God is good and His plan is always best.
Thanks again for praying so much for us. We love you all.
Sunday, November 11, 2012
Another prayer request is that he can get the actual procedure done ASAP. We want to lose as little "ground" as possible. We are both nervous and edgy about all the time that he has been off of treatment.
Not much else to say tonight. Please, please just pray - and thank you, because I know that you already are.
Thursday, November 8, 2012
We've been waiting for some scheduling conflicts to work out and I don't have a full update but here's what we know now. I'll be getting the "mapping" procedures done on Monday. This includes some blood work, but really it's a trial run to make sure there are no abnormalities in my vessels and that the radiated material doesn't leak into my lungs. Then the following Monday the Dr.'s will review my results to determine if we move forward. There is very little chance of a complication but just because it's unknown makes it worrisome. Please pray that all these test go well and there are no issues.
If I clear all the tests then I'll most likely receive the injection the Thursday after Thanksgiving. This is later than we expected and it has been frustrating trying to work around multiple Dr.'s schedules and Thanksgiving. The concern is how long I've been off of treatment. You can't do chemo for a couple weeks before the radiation. Not knowing it would take this long I've been off treatment longer than I expected.
This is a bittersweet circumstance. We're nervous about not treating for a month and a half. I do trust that God is in control but this isn't what I would have liked. However not doing chemotherapy for this long has allowed me to feel great the last couple weeks.
I forgot what it felt like to feel so normal. I have more energy, I've been able to help out more around the house, even played volleyball this week. More than that I've just felt more like myself. The indescribable effect of a year and a half straight of chemo has become my new normal. It affects my energy, my motivation, my appetite, everything. These drugs are designed to kill things and they do their job well.
I don't have a lesson or point to make. I just wanted to give an update on what we've been up to lately. I'm extremely excited to go to Chicago this weekend. I get to see my youngest brother Corey complete his final college football game. I can't tell you how proud I am of Corey and the Godly man he's become. He's a leader on his team and has been an incredible encouragement to me over the last year. It's so exciting to see what God's got in store for him.
I will also be giving the devotional to the team on Saturday morning. This will be the third time I've had the privilege of speaking to this team this year. I don't know what their win loss record is after hearing me but they keep asking me back. It's extremely rewarding to be able to encourage and hopefully inspire these young men to live their lives fully committed to Christ. Please pray for me as I really want to make sure what I share is what God has for these men to hear.
Thank you so much for all your prayers and support. Kendra and I don't get tired of hearing "I'm praying for you". We don't take it for granted and we know we're only in the position we're in right now because of God's grace and your constant lifting us up. This has been an up and down month for us and we have needed all the prayers we could get. Please pray that the procedure goes well, that the cancer is not spreading, and that my family would continue to be protected from the toll and effects this could take on them.
Sunday, November 4, 2012
"This Tuesday the fate of the world rests in your hands. Your vote and your vote alone will save all of humanity from imminent and complete certain destruction. The choice is simple. Candidate A will close the holes in the ozone, save the unicorns, and bring our country back to the good ole days of milkshakes, leisure suits, and wood paneled cars! Candidate B hates you and everyone you care about. They revel in your pain and suffering. Nothing they do has ever been, is not currently, nor could ever be remotely successful because they're the worst human being ever."
In my younger years (I know I'm only 26, some of you are rolling your eyes pretty hard right now), I used to get pretty animated about politics. I was very excited that I turned 18 on a presidential election year. I exercised my right to vote then, and took it seriously... until I got into the booth and learned that judicial candidates don't have party affiliations next to their name.
Whoops. Missed that one. Hopefully eenie meenie miney moe was spirit directed that afternoon because that's how we overcame that bit of poor planning.
The last presidential election I was 22. This time I was married, had a full-time job and felt much more "adult". I don't know if that was why I felt so much more anxious than the first time around. I remember the night of the election I stayed up way too late. That whole day I furiously checked the internet, the news, and the radio for some sign or indicator that my candidate was winning.
I was afraid of the consequences of the other guy winning. What would it mean for America, for me, for my family some day? The stakes felt so important that I was uneasy and irritable all day long.
This year things are quite a bit different for me. I still care. I still take it seriously, and know it's a special privilege to live in a country where I have the right to vote. I believe we should be informed, discerning, and judicious in our decisions when we cast our ballots.
So what's changed? I'm not worried one bit about who wins. I'm not anxious, nervous, or concerned about the outcome.
What it boils down to is God will still be the sovereign God of the universe on Wednesday morning. His plans can not be thwarted no matter who is President of America. My daily walk with the Lord should not and will not change based on who the President is. My purpose is still the same, the commandments I've been given are still the same, and God's plan for the world is still the same.
The question I've been struggling with lately is, why was I more emotionally concerned about elections in years past than I was about unsaved friends and family, orphans, or suffering people? I rarely, if ever, have stayed up late at night full of anxiety about the salvation of the people I love. Can you relate to this? Maybe you're a better person than me. I felt pretty guilty when I realized where my priorities have been the last couple years.
Cancer changes things quickly. I'm not advocating disengaging from society and not playing your part. I'm not saying that voting isn't important. Quite the opposite.
What I'm asking is: do you care more about what President you're following or what purpose you're fulfilling?
Sunday, October 28, 2012
Those were the tear filled words I prayed tonight at church during an incredible evening of worship and prayer.
The news I got this week was not what I wanted to hear. I try so hard not to have expectations before scans. I try to stay neutral. Sure I pray for healing, and believe it could happen, but I try not to expect it. Don't get too high or too low. This time was harder though. I wanted so bad to hear the word remission. I caught myself daydreaming about how I would respond.
I was going to walk back out into the lobby of all these cancer patients waiting to see their own doctors and share enthusiastically that 18 months ago I was given a death sentence. Today I'm in remission. Praise the Lord oh my soul and all that is within me! Bless His holy name!
I didn't get to live out that fantasy. Instead I received another one of those gut punches that are so visceral and raw they make you nauseous and dizzy. Instantly my mind started to go down those familiar yet destructive pathways.
Tonight Kendra is staying with a friend in Kalamazoo. So Colton and I literally drove straight from Chicago to our church's evening service. I planned to take Colton into the sanctuary until he started getting fussy or anxious then he'd go to nursery. Instead he curled up on my lap and sat so quiet and still for over an hour and a half. I think he's picking up on the emotions in my family. He doesn't know what's wrong, he just knows where a safe place is. This little boy with his head against my chest and my arms wrapped completely around him. I kissed his head, smelled his hair, and sang quietly into his ear. I stopped paying attention to anything else around me and Colton and I had our own worship experience.
It's hard to praise God when one of the things you're most afraid of losing is sitting on your lap. This innocent (most of the time), soft faced, little joy of a human being is so important to me. I'm terrified about what my absence might mean in his life. I'm angry that I might not be able to love him like I want. I'm bitter that I might not be able to do the things with him I want to.
I'm very scared about the future.
I'm afraid for Kendra. She has so much on her plate now. She spent last week working till 7, 8, or later with parent teacher conferences. No big deal you might think, but the week before scans everything becomes more difficult. Time away from family is a big deal. Yet she faithfully serves in whatever capacity God puts her in. I'm afraid about what my health might mean to her though. Life is so much work for her already.
Cooking, cleaning, taking care of a baby (me), taking care of a toddler, working, commuting, being a part of a small group, doing the bills, coordinating medical appointments and travel arrangements every other week. This just the short list. It is exhausting. What will happen if I'm even more hassle? What will happen if I'm gone? Who will she have to lean on?
Tonight at church we sang a song that may have been the straw that broke Ryan's back.
I don't know what resonated with me but I was almost breathless trying to sing the words that just wouldn't come out. Then they showed a video by Francis Chan that I'd seen before, and again for some reason tonight it just jumped off the walls at me.
Right now I have a choice to make. Am I going to shrink back down and cling to the beam? Is my faith so lacking that one test result would knock me off this journey of learning about radical obedience I've been on? All I want to do is crawl up on my daddy's lap and have him wrap his arms around me and tell me it's all okay. That He's got it all under control and I'm going to be fine.
Sometimes we don't have the faith that we desire. There's a reason God calls us to work out our faith with fear and trembling. It's a process. As the father in Mark 9 says, "Lord I believe, help my unbelief".
Right now I want to perform on the balance beam. I know that's where I need to be. I sure don't feel like getting up and doing flips though. My emotions tell me to lay back down, strap myself to the beam, and just survive.
I'm so scared. I'm so scared of what you might have ahead of me. I want off this ride. I'm tired and exhausted. Lord please I'm begging to let this cup pass. God there are things I confess I'm holding on to. I've been holding on to my son, and my wife, and their futures. I know that you are in control, and will take care of them, but yet I still try to hold on to protecting them. God it's so tiring trying to do my job and yours. I can't do it anymore. I'm raising the white flag. To you I surrender again, all that I have. God when I can't pick myself off the beam, please pick me up. Please hold me not in safety, but in obedience. Use me even in my brokenness to serve you.
Lord please don't let the things I hold onto prevent me from serving you. I pray my moments of unbelief will not keep me from what you have ahead of me. God I know all of this is so minor compared to the pain and anguish you and your son shared when you took my sins and paid my price for me. I feel selfish and embarrassed that I'm struggling with this. Lord thank you for loving me no matter how I feel. Lord I lay this before you once again, and praise you.
Lord I'm not in remission, but I will still choose to say,
Praise the Lord oh my soul and all that is within me! Bless His holy name!
Friday, October 26, 2012
I finally just got back to the hotel room after a very long day with my husband of appointments, consultations, crying, feeling better, breaking down again, putting on a brave face for Colton, and going to another consultation. Essentially, we have not received good news today, but we still have options moving forward.
This morning, we met with our primary oncologist and he delivered a couple of bad news blows: the two tumors that were left in August (very small) are a mixed bag: one shrank, one grew. However, there is also another mass that has appeared. Our oncologist thinks that it is probably another tumor, but our interventional radiologist (that we just met for the first time today) postulated that it also might be scar tissue or something from a dead tumor. Who knows. Regardless, the treatment that Ryan has been doing lately - the nasty, nasty chemotherapy treatment - is not effective any longer. So on to plan K (we've exhausted all of the letters A-J, it seems).
Radiation theraspheres. Some of the people reading this blog right now are probably very familiar with these, but most of you probably are not. Theraspheres are tiny, radioactive (Yttrium-90) glass beads that are injected into an artery near the right lobe of Ryan's liver, with the intention of attacking and shrinking and killing the 2-3 tumors located there (I should note, before I forget, that there is not any active disease in his lymph nodes, nor is there any disease anywhere else in his body - praise God). This will hopefully take place in the next two weeks. Pray for a.) our insurance policies to approve it, b.) for the consultations and procedure to take place expeditiously, and c.) for no more disease to spread in the interim.
A couple of positives about doing the theraspheres: Ryan will get about a month break from chemotherapy - if not six weeks. He is MAJORLY celebrating this. Also, this procedure does not have very many side effects. He's been feeling fine lately (aside from chemo symptoms), so hopefully he has the next six weeks to enjoy a small break from the drudgery of chemo.
Some patients have had wildly successful experiences with radiation theraspheres, some have not had any success. Our doctor does still have a couple of chemotherapy treatments in mind, so this is not the end of the line by any stretch of the imagination. This is a temporary setback. However, earlier today, it felt like I had my heart ripped out of my chest. This afternoon has been very, very hard and full of rage and tears, but at the end of the day, I know that we serve a God who is sovereign, loving, and wise. Nope, this wasn't my choice - I wanted to hear those words "cancer free" so badly today, but those will apparently be saved for another day in the future. If this is His will, if this is His plan, then we gladly follow this newest twist in the road and trust Him implicitly.
Proverbs 3 (NIV)
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.
Wednesday, October 24, 2012
Yes, I know Joshua 1:9 tells me to not be afraid. I've been commanded. I know that my God is a strong tower in a storm. I know that the He has plans to prosper me and not to harm me. But with very important scans staring us in the face and my husband mysteriously has dropped weight recently, I am almost at full-scale panic attack.
My meltdown this afternoon came about very strangely. I had a lot of time to kill between parent-teacher conferences, so I decided to go wander around and enjoy the beautiful warm air, so unlike a late October day here in The Mitten. I walked into a Hallmark store and began to browse around. I picked out a couple of Christmas ornaments for friends with new babies, and I was scanning the aisles for other treasures. Suddenly I came upon a rack of recordable books, the tagline "Recordable Books - for when you're not there to read it yourself". All of a sudden, I had this "flash-forward" (kind of the opposite of a flashback), envisioning my son listening to one of those books at seven years old with his father's voice coming out of the book. Because his dad isn't there. Because his dad had died of cancer.
I froze. Dropped the ornaments right there next to the books and hightailed it out of the store.
My mind a jumble and my nerves shot, I decided that Home Depot would be a nice, big place to get anonymous and lose myself in admiring appliances. But I could not shake that image of my son listening to his dad's voice through a recorder. I actually began to cry (in public) while standing in front of carpet samples. I was horrified and I'm pretty sure that the Home Depot employees were, too.
I trust in you, Lord. I know that no matter the outcome of these scans this week, that your will should be done. And it will be. But I'm so darn scared. I'm so darn scared of that image of my precious son, fatherless. I beg of you, God, please heal my husband.
Sunday, October 21, 2012
Recently on Facebook, I posted a status about how I wanted nothing more for my birthday than for my beloved Detroit Tigers to get a World Series berth. I was being half serious when I wrote that, partly because I really had no idea what I wanted for my birthday and partly because I really love those Tigs.
Well, as I've tried to think of something to ask for, I've realized I already have been given amazing gifts:
- I am a redeemed, heaven-bound follower of Christ,
- the Tigers did indeed deliver this year,
- and my wonderful, courageous husband is still by my side.
So finally I decided what to ask for. Please pray for my husband and I today as a gift to us both. Dear friends, today I am 28 years old. Please pray that he too will reach 28 years old (he is 16 months younger than I am). Truly one of the greatest blessings I have is how he's beaten the odds, and every day I have with him is a gift.
Five days from now, we will sit in a cramped examination room in Zion and find out how Ryan is doing. I am incredibly nervous. So much rides on every one of these scans and we've been fighting so hard. Please pray for good news, but also that we will be content regardless of the outcome.
(And World Series tickets are always a good idea!) ;)
Friday, October 19, 2012
Do you ever do that? The more out of control your life feels the more you try to control it. I think it's human nature. The last thing we want to do is relinquish what little "power" we have.
As much as I'd like to think it's about my circumstances, it's really about me. More than that it's about my perception of God. When life is out of control I inherently start to wonder if God is still as smart as He says He is. It's not going the way I think it should and I can't make it make sense.
As a matter of fact it's pretty scary at times.
How should we respond?
Sit deep, relax, and start giggling.
For Colton's second birthday Kendra and I bought him a miniature horse, Buckaroo. It's taken Colton a while to get used to the idea of riding Buckaroo. Some days he seemed to do better, but often times he was very scared.
If we could convince him to sit down on Buckaroo, he didn't hide how afraid he was. He would tense up, stop listening, flop or bounce around the saddle. I don't expect much from a two year old in his riding skills but I knew Colton had more balance then this. He seemed incapable of sitting up straight and staying centered.
A couple weeks ago on a night he and I were home alone we went out to chore the horses. We caught both our horses and let them eat a little grass. This was the first time Colton really led his horse around by himself. He did well and only once dropped the lead rope to go chase the dog.
The difference was his attitude. I think this was dependent upon his level of trust with me, the one leading him. What was the result? He rode better than he ever has. We walked and even trotted all over the arena. Without any assistance from me, Colton sat almost perfectly. He never swayed or fell off balance, and even was able to learn how to steer, stop, and get Buckaroo going (a considerable task).
It's our perception of reality that keeps our faith from growing. Most of the time the difference between success and failure in our walk with the Lord has nothing to do with what's happening around us and everything to do with how we perceive what's happening around us. Too often the filter is how will this affect me? Why is this happening to me?
Once Colton stopped focusing on what he was afraid of and started listening to me, everything got better. I didn't take him off the horse, but he learned how to ride. In the middle of trials the last thing I usually take time to do, is stop and listen to God.
God doesn't promise to remove us from our difficulties, He does promise "everything we need for life and for Godliness". He promises to teach us to ride through life.
Sunday, October 7, 2012
Job 8:21 NIV
He will yet fill your mouth with laughter
and your lips with shouts of joy.
This verse was posted online today by someone that I follow on Twitter. Thank the Lord that I saw this promise this morning and could rely on it as my husband drove away to Zion an hour ago to get his nasty treatment that will make me a de facto single mom/caretaker for about nine days, and my son went to pieces and screamed for his dad to come back. I sat down on the floor and cried with him. Actually, I still am crying. I hate the family time that cancer has robbed from us. I hate the stress it has added to my young son's life.
And yet I know that on the other side of this valley, there is peace. Joy. Hope. Comfort. Smiles.
I don't know what those circumstances look like. I don't know if my husband and I will high five each other here on earth and celebrate victory over cancer, or if we will high five each other in heaven someday when the second person gets there, and celebrate our ultimate victory in Christ, but I cling to the sure fact that there are better days ahead than this for those who follow Christ. Those days will be full of laughter and shouts of joy.
Monday, October 1, 2012
In case you haven't seen much of us lately, do not be alarmed. We are alive. We are doing as well as we can! I'm crazy busy with school, mothering, caretaking, and some projects. Ryan is busy with projects, work, speaking, and traveling. We have been home very little on the weekends lately.
We are grateful. Who would have thought back in those dark days of April 2011 that we would be here right now - busy, going about our lives, and doing our best to obey the things that God has placed in our lives. It isn't easy - He continually calls us to step out in faith and do some tasks that seem extremely difficult. Yet we know that His grace is sufficient for every day, and we are grateful for that grace that continues to buoy us down this long road.
The chemo blues
Ryan is on his fourth or fifth cycle of oxaliplatin, 5FU, and Erbitux. It has been a battle. I would definitely say that this has been his toughest chemotherapy combination that he has yet faced. The side effects are numerous: rash on many different parts of his body, extremely tired, sensitivity to cold, virtually no appetite, acid reflux, digestive issues, sores in his mouth, the list goes on and on. Taking care of Ryan has been a pretty tall order lately! I can assure you that his attitude and his resolve is completely unwavering. He is so nonchalant about getting treatment, even having a good attitude about the five-hour round trips to Chicago every two weeks. His dad is the person that is making this trip. We are thankful for him!
It is almost time for those fun, fun days of the year known as scan time! These will be taking place on Thursday and Friday, October 25-26. We are glad that we can combine this trip with some family time with Corey - he has a home game only 20 minutes away from Zion on the 27th, so we will stay after our appointments through the following Sunday. Ryan will be getting a CT scan done on Thursday the 25th, and we will get results on Friday morning. Given his lack of any pain or alarming symptoms, I am hopeful for good results!
Friends, this road is long and hard. I would definitely say that Ryan and I are both weary and downtrodden at the moment. Right now I feel like I'm stuck on a perpetual Wednesday. Nobody likes Wednesday because it's in the middle of the week and it's really far away from last weekend and the upcoming weekend. It has been a really, really long and hard 18 months and we are exhausted. Yet we know that we still have a far piece ahead of us. Please pray for renewal and encouragement. Please pray for us to keep our eyes fixed on the cross and that we would not feel any temptation to be disobedient while things are tough. We long to glorify God at every turn of this journey, and it's hard to do so when we we feel like we are stuck in a valley.
Have we told you lately, "thank you"? There are so many of you that are reading these words this moment and you have been reading since those dark days of April 2011 that I mentioned earlier. Thanks for walking this road with us, however long you've known us. We are thankful for your prayer and for your willingness to come alongside us as we figure out this journey that God has placed us on.
Sunday, September 30, 2012
That is what I yelled two Sundays ago as I headed out on the trail in the Big Horn Mountains and crested the first ridge. This is what I saw!
It was my favorite sermon I had heard in a while! And so began an incredible journey over the next five days. We would ride anywhere from four to eight hours a day, make camp at a new spot every night, and get up and do it again.
I don't generally pay much attention or spend much time thinking about the day a doctor at MAYO told me I had less than a year to live. This trip, I couldn't get it out of my head. I just kept shaking my head at the absurdity of a "terminal" cancer patient going to almost 10,000 feet and doing a pack and trail trip. Not to mention I did it in between chemo cycles without a delay.
This was a special trip. I've been in the mountains before (not these). I've seen incredible country in my life. In the past my response as I come upon another stunning vista was to say, "wow". This trip I constantly found myself saying, "thank you". Every time I thought about where I could be at this time, about my friends who are suffering from this disease, about my family, I said, "thank you".
Every time I saw something that took my breath away, or a trail mate helped me with the labors of making camp, I said, "thank you". (There's a cow and calf moose pair in this pic)
As I looked for a place the first morning to do my devotions, I meandered my way down to the creek we camped next to for water. It was a gorgeous morning and I took my little stool and my bible from my saddle bags and sat next to the running water.
I had been reading Nehemiah, but flipped to the Psalms and stumbled upon the 23rd Psalm. It took on a new meaning for me. A passage I'd memorized when I was in third grade now came alive.
New American Standard Bible (NASB)
The Lord, the Psalmist’s Shepherd.
A Psalm of David.
23 The Lord is my shepherd,
I shall not want.
2 He makes me lie down in green pastures;
He leads me beside quiet waters.
3 He restores my soul;
He guides me in the paths of righteousness
For His name’s sake.
4 Even though I walk through the valley of the shadow of death,
I fear no evil, for You are with me;
Your rod and Your staff, they comfort me.
5 You prepare a table before me in the presence of my enemies;
You have anointed my head with oil;
My cup overflows.
6 Surely goodness and lovingkindness will follow me all the days of my life,
And I will dwell in the house of the Lord forever.
I had just taken my horse off the high lines from the evening and let him loose in the pasture. He was ecstatic.
Well we pressed on and hit the trail again. This trip was a big risk. We would be riding into the Cloud Peak Wilderness area. Nothing wheeled or motorized is allowed into this uninhabited reserve. Even emergency helicopters have to get special permission to land. We would be about a days ride away from help if anything happened. I won't lie, and I'll tell you that some people in my life were a little worried about how I would do.
I had prayed and listened and in the end felt at peace that this was an okay thing to do. The second day was going well. I felt great, the horses were doing well, and we were seeing some amazing scenery. We came to probably the steepest toughest climb of the entire trip. I was leading, and we decided to head up the windy trail. It was a very steep grade that we were cutting across on about a 10-12 inch wide path. The footing was extremely loose and sandy. To our right was the incline and to our left was a decline for about fifty yards then a drop off of a couple thousand feet. About two thirds of the way up my horse who is only five and still learning what he's capable of starting to get squirrelly. I could feel it and spurred him hard to keep him going.
He started to lose his footing and slip down the hill sideways. I quickly realized he had stopped listening to me and was in survival mode. I stepped off him on the up hill side and as I hit the ground I lost my footing and slid underneath him. I quickly scrambled up the hill and still holding on to him as he started sliding down the hill backwards began a tug of war with a 1200 pound animal falling off a mountain.
Needless to say I lost and the horse got loose. I thought he might keep sliding down the hill and hit the cliff, but fortunately he caught himself on a small tree and got his balance.
I was running on adrenaline but could already tell I didn't have much more energy to chase him all over this mountain and get him up the hill. The other riders kept going to get their horses up the hill and to safety. My good friend Chad who drove out with me and really made this trip happen for me from a logistical stand point, let his pack horse loose and rode down to my saddle horse. Chad and Cruz were able to grab my horse and get him back up the trail and up the mountain.
This is the view from the top of that mountain!
In the end I didn't have a scratch (a sore arm and shoulder but no blood), my horse had a nick in his leg (a long ways away from his heart) and we all had quite a story. I did however have a another example of how my amazing living God provides and protects. As I sat on the top of that mountain catching my breath the same words came to my lips... "thank you".
The next couple of days were an incredible journey through more mountains, valleys, lakes, and panoramic views.
I asked you for prayer for direction in some areas of my life. It's hard to be in that environment and not feel like God is talking to you. I prayed, listened, and sat still. There was no audible revelation, but there was a growing sense of peace about a decision I needed to make. As I came to that conclusion a familiar phrase came to my mind, "thank you".
This entire trip was a blessing and a privilege. When I start to struggle and get discouraged I often am thinking about all the things I can't do anymore. I can't play sports, work around the house much, think straight all the time, make plans for the future, commit to events with confidence, and so much more.
I often share that if I look at the activities and desires of my life as a right, then I get offended when I don't get to do them. I am resentful and bitter as I feel I've been robbed of certain things "I deserve".
When I look at all those things as a blessing and a privilege, then when God allows me to encounter and experience them, I'm overflowing with gratefulness. It's such an unexpected gift that I can't help but say "thank you".
This is a good place to live. Simple things like an evening with my son, or a sale at work, or a little spurt of energy can make your day. Big things like a trip out west with some incredible friends, the opportunity to connect with a young man newly married who is struggling through cancer himself, or watching your wife pour herself out to those stuck in this terrible cancer journey while she battles her own demons give you such a sense of indescribable thankfulness that you can't help but want to live your life sold out for God.
Whatever you're doing today, make sure you stop and take a few moments to say, "thank you".
Sunday, September 16, 2012
Maybe you're beaten down because of work, or family, or finances, or health. Maybe it's all of the above. Sometimes the anxiety of a big decision or even a bunch of smaller ones can create this feeling of uncertainty and unknown.
I have no idea what the next three months, six months, a year, or five years look like. That can scare me. As a long-range planner, I rarely find myself in this position. Yet no matter how much time I spend thinking about things, asking others for advice, and praying there is just no way for me to know how to prepare for the future.
I can make the best made plans and due to my health they can become irrelevant in an instant. I could never make any plans and then even when I feel well and things are going well I'd never do anything because I didn't plan.
I'm stuck. It's not just big stuff like jobs, and cars, and houses. It is little stuff too. Do I accept a speaking opportunity not knowing how I'll feel? Can I make this appointment for work? Can I take Kendra out on a date? I just don't know.
When I look to the future I see so many incredible and exciting opportunities. I could be headed in any one of a couple different directions and they're all excellent opportunities. I just don't know how to prepare.
I think the problem is I've been doing too much talking. When I pray I do most of the talking. I feel like I'm missing half the conversation. A spiritual discipline that I haven't developed enough is listening to God.
A mentor challenged me to stop trying to figure things out and start listening. He gave me a book by Mary Geegh called God Guides. This incredible woman was a missionary in India for over 35 years. The book is a collection of stories from her life and how the habit of listening during times of uncertainty, confusion, or turmoil led her to some incredible places.
As I read the book I started trying to do it myself. I was doing my radiation in Chicago at the time and was alone during the week for 8 weeks. It started out rough. My mind raced, distractions danced around the room. I could barely scratch out ten minutes at a time.
I never recieved any clear direction about anything. I did start to become very aware of my own sin and lack of ability to focus on God. I was embarressed and frustrated. I can watch a movie, read a book, and watch a game for hours but I couldn't spend ten unadulterated minutes with God? What was wrong with me?
The first clear message I got from God was to get on my knees.
I had been in a chair, reclined, with my eyes shut. I know, that was dumb.
The act of getting onto my knees in this physically uncomfortable position kept me more alert. More than that though was the mental and emotional feelings of being face down before my God.
The first time I did that I went for almost 45 minutes straight!
Over the next couple months I started to build this into my life more regularly. Sometimes it was ten minutes sometimes an hour. Often times I never felt anything specific but always felt at peace.
I'm still a greenhorn at this discipline. I'm raw and unskilled and inconsistent. Even then, it's begun to change my life and how I live it. When you take the time to listen to what God is telling you, you start changing your thought process from what I want to what God wants. My thoughts become molded to His thoughts.
As I write this, I'm in Wyoming about to head out on a five day pack trip this morning. I'll be riding in God's country with a few friends, some horses, and Wyoming mountains. This is something I've been looking forward to, but now I feel like I have a purpose for it as well.
You see, I don't hear too well. The chemo has affected my ears and "what" is one of my favorite words now. I feel like I have a lot of decisions, pathways, and unknowns ahead of me and I need to be ready when the time comes to make them. I don't hear to well, so the best thing I could think of was to get closer to the source.
As God is in heaven, I had to get up in the mountains to hear him better. So I am asking for your prayer on a couple fronts.
Please pray that I would be physically able to endure the trip. I've felt better this cycle than any other cycle so far, but I'm definitely not 100%.
Please pray that as I spend time listening to God, so that I can hear that still small voice, I would be given direction on what God has in store for me. I am not necessarily asking Him for specifics, more a vision of how He wants to use me.
When you're done praying for me, why don't you spend a little time listening for yourself while you're at it!
Saturday, September 15, 2012
I had traveled this road.
But I was asked to get off
And set down my load.
So I sit by the side
And watch the traffic go by.
I catch glimpses of smiles
As they speed and they fly.
It's quiet and lonely
Here with my thoughts.
Thinking of sunshine I saw
'Ere the day I got off.
How fast the cars move,
How invisible I feel.
They don't see me sobbing
As I crumple and kneel.
"Why am I here, God?
Why must I wait?
I have kept your commandments,
I have persisted in faith.
I trust you and love you,
But I really must go.
I've been waiting here too long,
With nothing to show."
I beg and I whimper,
I complain and I cry.
But all I hear is silence
And the cars passing by.
Friday, September 7, 2012
Saturday, September 1, 2012
I'm not dead yet (subtle Monty Python reference).
Wow what a month. It's hard to know where to start to try and summarize how I've felt over the last couple weeks. It wasn't too long ago we were anxiously awaiting the results of our scans.
Imagine our joy and thankfulness when it was revealed how much progress had been made due to treatment, radiation, and prayer. We celebrated and cried, but it was always a little reserved.
This was a huge step, a step we'd been praying for. However it's still one step. There is a long journey ahead of us no matter how things turn out. So I have to keep my "game face" on to a certain extent. That being said because this battle can weigh so heavily on you, you have to celebrate the joys God gives you.
A week later we had met Chris Tomlin, been hospitalized, and were still waiting to find out what was going on. A urinary tract infection turned septic was the hidden cause behind the pain, amnesia, disorientation and everything else.
A short five day vacation in the hospital in Chicago was exactly what I needed. God's ways are higher than my ways though. Through the course of tests to determine the source of the infection, a test showed the tumors were still shrinking even since the previous week!!! How great is our God?
Then my treatment was delayed for a couple weeks as I recovered. I was tired, mentally drained, and overall very exhausted for the majority of the last two weeks. Monday we finally started treatment again at a lower dose to make sure my counts stay high enough (prayer request).
Yesterday, Kendra, Colton and I headed out to Pennsylvania to Miracle Mountain Ranch to attend their family camp and be able to share our story. This is another camp that has played a part in shaping who I am today. The staff have been friends and mentors who have supported and guided me since I was 15.
In the meantime Kendra has started school, Colton is back in daycare, and things at camp feel busier than ever! I don't know where God is taking us over the next couple weeks/months but I do know I'd rather have God plan it than me.
There's no deep point or analogy today. To be honest I'm having a hard time finding moments of clarity to share what's on my heart. Don't mistake that for God not continually challenging and molding me. There's so much going on that I would like to share. Getting it from my broken mind at times is very difficult.
Please pray for our little family over this time of transition.
- That Ryan would have energy and be able to help out with keeping up life
- That Kendra would start the school year off with a bang and have chances to impact other students and teachers
- That Colton would do well at daycare and continue to be sheltered from the effects of my cancer on our family
- That Ryan would be protected physically from infection, low counts, complications
- That the cancer would continue to die, disappear and doors would open for future treatment options
- That Kendra and I would continue to be obedient even when it's overwhelming and God would use our story to change lives!