Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. 2 Corinthians 1:9
Thursday, August 16, 2012
At home, and happy!
I would like to happily announce that this blog is being written from the comfort of my living room in New Era, Michigan. Ryan and Steve and I returned around 3:00 AM yesterday morning. It has been a very busy time trying to get things settled, organized, and for life to kind of return back to normal. To give some perspective, Ryan and I have only been home for about 6 out of the last 14 days! Naturally, there are a lot of bills to pay, laundry, housework, and bags to unpack (I hadn't even unpacked our suitcase from going to Zion for scans last week before we left again).
Ryan is doing pretty well, but has a long way to go before he's "normal" again. Right now his demeanor and stamina is kind of like what it is after he gets an infusion. But the story is, essentially he had a simple infection that has started to go systemic. Actually, because his white blood cell counts were so low, it advanced extremely quickly. He was pretty much fine last Thursday, and he was septic by Friday afternoon. He also had a small spot of his body that was hemorrhagic because of the infection, so his oncologist is giving Ryan another full week off of treatment to completely heal from this. That puts his next treatment around August 28th. That will be an entire month off, which is the longest he has gone for the last sixteen months without treatment. Although I celebrate that he has some time off to recuperate from a very, very long stretch of chemotherapy, I would be a liar if I didn't say that I was slightly nervous about losing ground.
Speaking of momentum, we found out from a CT scan this week that his tumors are dying quickly. The two spots that I mentioned he still had last week had shrunk noticeably in only one week. We are praising God for this news, as it finally seems like we have struck the right chord in treatment. Radiation? New chemo regimen? New nutritional lifestyle? Just simply God's timing and healing? We aren't sure which combination of those four things it is, but we are grateful that the Lord has chosen to move in this way.
We are also extremely thankful for the people that helped us through this. We are especially grateful for Steve, who accompanied us on what was SUPPOSED to be a short trip to the ER, and turned out to be a multi-day ordeal in Zion. Cathey and my parents took care of Colton and Tuff, our dog. Corey picked us up when Steve's car broke down and took us to Zion, and then he let us use his car the rest of the trip. Chad, Ryan's friend and coworker, looked after our horses and even made sure that they made it to the farrier. Lots more people offered their help and support. And we could not be more encouraged and grateful for the support that people have given us through our blog and Twitter and Facebook. We are floored by the love and the excitement and concern that people have demonstrated to us the last couple of weeks.
In spite of the unexpected infection and hospital stay, we have had a VERY positive August. We could not be more thrilled with the news we've received and are riding a tidal wave of happiness. Medically speaking, Ryan should not be alive, and he should not be doing as well as he is. By God's grace, we are in this position, and we give Him all the glory and honor.
Tuesday, August 14, 2012
So close to going home, yet so far away!
Well, if this hospital stay has been a test of my patience, I must say that at the moment I am failing that test miserably. I am trying to work on my attitude, but at the moment it is not the greatest. :(
To sum it up succinctly, there hasn't been a lot of urgency on the part of the generalist overseeing Ryan's case to move this process along quickly. I don't think that he had a firm concept of the fact that we have a two-year-old that we both miss terribly, that all three of us (Ryan, myself, and my father-in-law) have jobs with responsibilities - I am missing two days of back-to-school meetings this week - and that we left home on Friday just expecting to "run to the ER and back". Four days later, here we are still. Now he knows how we feel, after we had a conversation with him this morning.
The good news is that it really seems like we are leaving today. We were initially told by a specialist this morning that Ryan would be getting a test done tomorrow at 11 a.m., but my husband channeled his frustration into a very direct persuasion that magically moved the test up to 4 p.m. today. :) Once this test is over, Ryan will have to be in the recovery room for a short spell and then we can get on the road.
Please pray for traveling mercies, a Christlike attitude, and that we wouldn't waste opportunities while we are here at CTCA to share the hope that we have. We know that God doesn't allow things like this to happen by accident.
Saturday, August 11, 2012
The story of the slowest mad dash to Zion, ever.
I realize that some of you are pretty sketchy on details of what went down with Ryan yesterday. Of course, most of you know that we got amazing news this week about his cancer. What you may NOT know is that we also met Chris Tomlin this past Thursday after his Unity Fest concer, which was super exciting! I'm planning on writing a post about that soon. (I was going to write it yesterday afternoon, but yesterday fell apart...more about that right now.)
So after a phenomenal week, Friday morning started out kind of sluggish. Because Ryan and I were out whooping it up late Thursday night (my parents watched Colton that night, so we were certainly footloose and fancy free!), I slept in kind of late. Ryan woke me up around 9 a.m. to tell me that he had not slept well the night before and felt like he was coming down with some sort of cold or something. I got up and made him breakfast and sent him to work late with a mug of green tea and a kiss on the cheek. I was mildly concerned because he was developing a "cold" and had had such low white blood cell counts this week, but didn't think much of it.
I went and retrieved Colton from my parents and went to a farmers market to get vegetables for a soup that I was planning on making Friday evening. As I was chopping veggies and Colton was busy making total chaos of the house with his toys, Ryan texted me and asked him to come get him. I texted back that I would come get him as soon as I got the soup going, which would only take a few more minutes. Five minutes later, he called me and asked me again to come get him. I told him, "Sure. You just texted me a few minutes ago, though. I was already planning to come." He told me that he had no recollection of texting me and that he had just thrown up. So I dropped the veggies, grabbed rain boots as it was super soggy outside, and Colton and I loaded up quickly.
On my way to get Ryan, he called me two more times (it's not THAT far of a distance). Each time he sounded more and more distant and "out of it". I was beginning to get really scared because he wasn't acting completely conscious and he was talking very strangely. When I arrived at Grace to pick him up, I found him laying down on the couch at his parents' house next door to camp, with his summer media specialist Brian sitting by him. Brian told me that he had been in a meeting with Ryan when Ry suddenly started to act...not lucid. Ryan abruptly got up and left the room, and Brian heard him throw up and try calling me from the bathroom. Brian, if you're reading this, know that I'm really thankful for the way that you took care of him and didn't leave his side while I was coming to get him! You are a gem. (Even if you DO go to U of M.) ;)
Ryan's dad arrived at his house and we decided that Ryan should get to an ER ASAP. We decided that I would take Ryan to the ER and Steve would stay with Colton for the afternoon. So I loaded up my groggy husband and we took off for Muskegon. Mercy Hospital's ER turned out to be an exercise of patience, futility, and frustration. Essentially, we were there for four hours, Ryan did not get any fluids or meds, and he started to get belligerent when I tried to give him gentle suggestions. This belligerent side of Ryan is NOT something that I've ever seen before. Plus, he started to get some seriously strange GI symptoms. Muskegon and CTCA corresponded on the phone and it was decided that Ryan needed to get to Zion that day. Unfortunately, we could not go by ambulance (still trying to figure that one out), so we went in Steve's car.
This is when things got really dicey. Ryan was still fairly disoriented, and was asking Steve and I the same 10 questions every five minutes: he inquired about his horses, our dog, our son, his brothers, he asked if Brian the media specialist was okay, he had no recollection of anything that had happened to him that week, and he wanted to stop and use the restroom every fifteen minutes. We made three stops between Muskegon and the Michigan/Indiana border. Then, as we crossed into Indiana, Steve's car started to act weird. We pulled off at a gas station in Lake Station, Indiana and decided that it was not wise to risk going any further. After checking several nearby car rental agencies and discovering that no one in northern Indiana rents a car past 6 pm, we called Ryan's younger brother Corey who goes to school in Deerfield, Illinois to come get us (this was an hour and a half from where we were). As we were waiting, Ryan's demeanor started to return to normal and he was starting to feel better. We were relieved that his symptoms were not nearly as intense, as waiting was hard enough on us already.
Finally, Corey arrived and took us the rest of the way to Zion. We FINALLY arrived around 11 pm Central time and he was processed and admitted within the hour. All in all, the mad dash to Zion took seven and a half hours. Steve got a hotel room across the street and I stayed in the room with Ryan. When we woke up this morning, Ryan was definitely beginning to recall some things that happened this week (he remembered the previous trip to Zion, and the Chris Tomlin concert), but he remembered almost nothing from Friday.
So far, he has had an Xray, a CAT scan, an MRI, blood cultures, urine samples, and several physical exams. The doctors have ruled out high ammonia levels, there is no metastasis of any kind on his brain, his white blood cell count is normal, but his platelets are low and they won't entirely rule out some sort of infection until the cultures come back. We thought that we would probably go home tomorrow (Sunday), but the on call doctor told me that she doesn't think that we will probably go home until Monday at the earliest, when Ryan's primary oncologist can visit him and evaluate him. If Ryan does have some sort of infection, we might have to rule out treatment this week AGAIN.
Sooo...that is the long story of what has transpired. We are doing okay. My heart was in my throat the entire afternoon and evening yesterday when I had no idea what was wrong with my husband and he was acting so unlike himself, but today it is reassuring to see him at his normal self, eating food, being a polite, sweet man again, and able to recall things that have happened. His GI symptoms are lessening, too, so that is an excellent sign.
We covet your prayers for wisdom for the doctors, peace as we continue to try to get answers about what's happening, for grace and strength to get through these long days of waiting and cooling our heels, for continued healing...and for this mama's heart as she so sorely misses her little boy. I have only seen Colton for about an hour in the last forty-eight, and likely will not see him again for at least forty-eight more. :(
We will continue to update Facebook and our blog...especially now that I know where they hide the computer lab in this huge hospital. ;)
-kp
Tuesday, August 7, 2012
Update!
1.) We met with the doctor this afternoon. He is pumped and thinks that Ryan's prognosis is just amazing and miraculous! The fact that it is out of the lymph nodes is really, really encouraging. He said that we're starting to enter into "uncharted waters" because there are so few Stage IV cholangiocarcinoma patients that reach this point.
2.) For the time being, we are going to do four more cycles of 5FU/Erbitux before we do more scans - this will make the next scans sometime around mid to late October. He might be restaged at the next scans.
3.) Around the bend: pending the results of the NEXT scans, we are going to look at possibly meeting with a surgeon (!!!!) to get the rest of the tumors OUTTA there. <--- That means REMISSION, folks!
4.) Unfortunately, Ryan's counts are so low that we are not able to do treatment this week. He is going to get 3 neupogen shots this week and we'll try again next week - yes, that means another trip to Chicago. :(
Praise God! Praise His Holy Name!
Today is a day of rejoicing.
Today is a day of remembering God's faithfulness to us.
Today is a day of praising Him recklessly.
He has been so very, very gracious to us this day.
This morning we met with Dr. Eden, the oncologist who oversaw Ryan's radiation treatment. He was smiling ear to ear as he entered the small examination room, which immediately buoyed our hopes! He told us that the report from the PET scan read that Ryan's cancer has considerably shrunk/disappeared. Nodal disease? Appears to be gone. Small lesions that covered the liver? Gone. All that remains are: two. tiny. tumors. About the size of one quarter, each.
This afternoon we will meet with our primary oncologist, Dr. Sheelvanth. Dr. Sheelvanth has been directing Ryan's treatment plan from the very beginning. There are a few options that we discussed in April that will be on the table:
- Continue with systemic treatment (i.e. more chemo)
- A chemoembolization (injecting chemo directly into the tumors)
- Radiation spheres (more localized radiation to the two that are left)
- Surgery (long shot)
- Transplant? (our desire, obviously, but still probably not on the table yet)
Monday, August 6, 2012
Prayer requests from Zion, Illinois.
Tuesday, July 31, 2012
Life is simple... just not easy
Deep breath
Sigh
Gag
Swallow...
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 24, 2012
Let the prayers begin!
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
How is chemo like a leaky washing machine?
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
Sesame Street wisdom?
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.
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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."