Today was an exciting day. Cody had his staples removed!

[[still a large fluid collection on the right side between the skull and skin]]

 

As you can see, Cody has lost all of his hair in front of his incision. He had burn/blisters from the adhesive used during surgery. Once those scabbed over and started disappearing, so did his hair :)



Cody and I are both very quiet people and don't like to draw a lot of attention to ourselves. It is hard for us both to comprehend the support and outpouring of love we have seen from family and friends, and even people we don't know, through this time. We have our family and our close knit group of friends, but otherwise we aren't well known. My entire life, I've been accused of "being stuck up" or "being better than everyone else" simply because I am shy. Cody and I are both so very similar in this way. This is why we are in absolute awe at the messages, meals, donations, help and support that we are receiving. We are truly humbled by it all.

And THANK YOU to those that continue to keep our family in your thoughts and prayers. Although the fast pace and shock of the initial surgery and diagnosis is over, our struggles and fears will continue tomorrow, next week, next month...

I am guilty for not responding to every email, Facebook message, text, phone call, etc. but that in no way means that every single one doesn't touch my heart in one way or another. You all are amazing. And even if Cody and I like to keep to ourselves and think we can take this on alone, we are smart enough to know that it is through all of the prayers and encouraging words of YOU, that are helping carry us through.

possibly a new option?

We met with Cody's oncologist this morning in Sioux Falls. After first discussing what his chemotherapy plan will look like, we started chatting about the clinical trials at Duke University. Right now, they are doing some of the most promising treatments in the nation for Glioblastoma. Through the Dr.'s recommendation, he feels like we have nothing to lose. Cody is young, strong, and healthy.

The Dr. wasn't recommending Cody start chemo for another couple of weeks anyway, so in the meantime, he is going to make the contact and referral to Duke. At this point, we don't know if they would even accept Cody or if he would meet their criteria for any trials. But we definitely left there excited about the possibility. Of course, now we wait. Again. They are hoping to get things figured out within the next week or two. If they choose not to accept Cody, then his chemo plan is set and ready to go. Cody's ready. He's ready to give it all he's got.

In other news, his back is doing much better and he feels like he's getting better headache relief from his new pain meds. His energy remains limited. He is anxious to get back to work, but I'm not sure how he's going to manage that when he's still sleeping 20 hours a day!

in sickness and in health

No relationship on earth, other than my relationship with Jesus Christ, is more important than my relationship with my husband. Cody and I have been together for 16 years and married for 9, and we haven't always had an easy relationship. We've had our share of struggles and we've managed to work through them. Some easier than others.

I have been fortunate enough to receive some great information on marriage that has helped Cody and I reveal the heart of Christ within our marriage.

A verse read at our wedding was Genesis 2:24
"Therefore a man shall leave his father and mother and be joined to his wife, and they shall become one flesh."

--the husband-wife relationship is the permanent relationship. "What God has joined together, let man not separate." (Matthew 19:6)
--there should be no closer relationship than that between two spouses.
--and they shall become one flesh -- Marriage takes two individuals and creates a new single entity. There is to be such sharing and oneness in every aspect that the resulting unity can be best described as "one flesh." 

Once we re-discovered and immersed ourselves in God's design for our marriage, things fell together unlike never before. With a Christ-centered relationship and an unwavering commitment to making it work, our marriage has flourished- just as God designed.

I can't imagine going through this experience with a wavering marriage. When I entered into this covenant relationship, I intended to honor my vows....for richer or poorer, in sickness and in health, to love and to cherish, till death do us part.

I love you Cody Finke, happy anniversary! And I pray that "till death do us part" is a long time from now.

we finally made it back home to Brewster today and it feels great. with the exception of the few hours we were home on the day of discharge, we haven't been here since june 21st.

two weeks after surgery, this is what's going on:

head pain:  pain continues to be significant. it's not getting any worse but it doesn't appear to be getting any better either. I spoke with the surgeon's nurse today and they are going to try another prescription for pain medication.
back pain:  still having pain in his lower back, butt, and down his hamstrings. although in the last couple of days, this has visibly improved. he is moving with more ease. he continues to seek treatment for herniated disc.
seizures:  under control with the dosage change of seizure medication.
energy:  none.  he spends most of the day in bed. if he does get up, it's for short periods of time and he shortly finds his way back to the bed.
appetite:  not great. he will not ask for anything or eat anything on his own. if you dish a plate up for him, he will typically eat it.
sleep:  this is another area of frustration for him. with his pain, he struggles to find a comfortable position. he has usually been awake around 2am simply not able to sleep anymore.
activity level:  none. his biggest activities involve showering or moving from the house to the car to get to appointments.
incision site:  looks great. will plan on removing staples within the week.
attitude:  crabby, but I can still get a smile out of him.


10 years ago, cody had absolutely nothing to complain about. he had a smooth recovery and quickly returned to all his normal activities. this time, he is struggling. and it's thoroughly annoying him that he can't do the things that he wants to do.

also, we are still waiting to hear from oncology in sioux falls. i've made multiple contacts, but we have yet to hear of an appointment time.

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.
Philippian's 4:6-7

(a dear friend shared the following devotion with me, and it was perfect)

.......... 

Dear Father, you are the Prince of Peace and the great I Am. You are my helper and my redeemer.

I need your help today. I am weak and frail and tired. Give me the strength to get through just this day and the desire to work as if I am doing it all for your glory.

Help those who are carrying especially heavy burdens right now. They need your power and peace that goes beyond our understanding.

I am so grateful that I can come to you and present my requests at any time. Thank you for giving me peace and rest even in the hard times.

In the name of the Prince of Peace, I pray, amen.

 





Today, I have the overwhelming feeling of frustration.  And I feel like I don't have the right to feel that way. After all, he's the one who is sick. I'm just the caregiver. There is NOTHING in the world I want more right now, than to take his pain away. I get the fact that he's in pain and I can't imagine what he's going through.

BUT,

I'm busting my ass to not only make sure he gets Keppra 2x/day, Medrol dose pak 6x/day, Oxycodone 6x/day, Tylenol 4x/day, Reglan 4x/day (for headache), DocQLace 2x/day, and Miralax 1x/day, but to also make sure I don't drive too fast, brake too fast, hit bumps too hard, don't laugh when I think he's funny but he's not trying to be funny, don't move him too much when I roll over in bed, tell him when he's taking a steroid so he's prepared for the nasty taste in his mouth, make sure he has a straw in his cup, give him enough time to get out of bed before we need to be somewhere, help him get out of bed but not pull him up too fast, be there when he gets out of the shower to help dry his legs and put on his shorts, put his socks and shoes on, keep up with phone calls and appointments, updating family and the blog.

I'm starting to crack. And I'm afraid the crack is going to get bigger. And if there's anything I do NOT want to do, is break. Because if I break, I don't think I'll be able to pull myself back together.



here is a quick update:

-we didn't last long at the campground tuesday night. cody had a horrible night and we were out of there by 10:00 the next morning (with no plans of going back). we'll see what the weekend brings.
-today we met with the neurologist, as a follow up to the seizures. he ordered an EEG that cody was able to do right away following his appointment. we will also monitor his seizures for the next week to determine possible dosage/medication changes. from what cody describes, the dr. feels like what he's experiencing would be classified as complex partial seizures. it is likely cody will be on anti-seizure medications the rest of his life.
-the neurologist also ordered an mri for cody's back. thankfully we were able to get that in as well this afternoon. it was nice to get it all done in one day, but cody is definitely worn out tonight. he showered and went straight to bed.

although the day was busy, we left with no new answers. here's to hoping something gets figured out soon.

just a few photos

I think it's easier to pray for someone when you can put a picture behind the story.

 

{{amazing support from amazing family and friends}}

 

{{after seizures when he was put back on the ventilator}}

 

{{my view}}

 

{{34 staples}}

 

{{first meal after surgery}}

 

{{up in the chair}}

 

{{annoyed that the swelling had moved from his right side to his left, but super pumped about going home}}

 

 

We left the ER at 3:30 this afternoon with a couple new prescriptions and med combinations to see if we can't get this pain under control.

And now, we're sitting by the campfire at Lake Herman. We always camp over the 4th of July and this year... thanks to a father-in-law who pulled our camper out here, friends who cleaned and put our camper together, and a mom, dad, and sister who took care of our kids... we are able to enjoy a peaceful night by the fire with our feet up.

We play it hour by hour around here, so we will see how long it lasts. Right now, Cody has another appt tomorrow afternoon so we will pick up the kids then and come out as a family. They are so excited!

Once we finally got to bed last night I had set my phone alarm for
11:30pm
2:30am
4:15am
6:00am
8:00am
(I joked he was worse than a newborn!)

I've been getting him pain meds (oxycodone and Tylenol) around the clock and his pain has remained off the charts. And I don't have a wuss on my hands either. That's why this is so difficult for me to tolerate myself. It makes me physically sick to see him in so much pain  :(

We called Rochester again and the dr. was not comfortable with the pain getting worse, he should be seeing improvements. They suggested we head back to the emergency room to see if there is something new going on. So by 10:30 this morning we were back in the ER at Sanford.

We cant seem to be getting on top of this. We were up most of the night last night and even though cody was loaded with pain pills, his pain was off the charts! Finally about 6:00 this morning, he felt as though he was finally getting the pain in his head under control.

Cody has also been struggling with some significant lower back pain that extends down his butt and into his legs. Getting him out of bed has been next to impossible and when he is up, he can hardly walk. This additional pain has made him miserable and I needed to do something about it. I called ChiroSport in Brandon and they were able to get him in today. They specialize in chiropractic care as well as rehabilitation. And I must say, they were amazing! His dr feels he has a herniated disc....most likely caused from a combination of his position on the table during surgery and his seizures post surgery. She tried some therapies and gave him exercises to complete at home, in hopes of getting this part of his pain under control, so the rest of him can heal. Unfortunately he's probably not going to notice the benefits for a few days.

Today has been a day of intense pain, that has been difficult to control.  Cody hasn't been out of bed much at all and the nurse has changed up his regimen of pain killers.

Tonight, we're asking for prayers specifically for pain control in order to get some much needed sleep.

our first night at home didn't go as well as planned. we got home mid afternoon and cody went straight to bed. he was up shortly after 7pm and we were just chatting as he was laying in bed. he looks at me and says "i think I've been having seizures."  say what?!?  next we played 20 questions and i tried to get as much information out of him as i possibly could (without making him feel like i was drilling or attacking him...it's a fine line we have play around).  apparently he's been having them the whole week while still in the hospital. i told him i thought he should get up and get outside for a little walk. while we were walking, he had one. if he wouldn't have stopped and told me about it, i probably wouldn't have been able to see it. but he gets super dizzy, a strong taste in his mouth and a little confused/"out of it."  it only lasts for a couple of minutes. after our walk he wanted dairy queen.  we drove to Worthington for blizzard and straight back home.

i called the neurosurgeons service in Rochester. i was to give him a double dose of his seizure medication and get him to the emergency room to be observed. thankfully i hadn't unpacked our bags yet, and back in the car they went. we got to Sioux falls shortly after 10:00pm.

lab work looked good. a head CT scan was compared to the one from Mayo and that also showed nothing alarming. the neurologist in Sioux falls suggested to continue the double dose of seizure medication per day and follow up with a neurology appointment. we were then on our way.

we were back in Brandon around 2:00am and crashed. we are hoping to get a good night sleep soon!! i think we're due :)

We're going home today!! Cody is dressed and ready. He's getting annoyed that they're not getting him out of here faster.

The swelling just continues to move around. Now this morning, he woke up and his left eye is completely swollen shut.

As scared as we are, we have been given so many blessings throughout this process. And we can feel the love, support, and prayers from all of you. Thank you for keeping our family in your thoughts.