Wednesday, May 28, 2014

Eye Surgery next week

I was at the eye doctor again this morning for followup.  No change in the size of the abrasion from last week.  My eye is less red and the pain is almost nothing.  I wasn't doing the blood serum tears and erythromycin gel in the right order, so we got better instruction on that.

The long term plan is a permanent (but reversible if for some reason I don't like it) stitch in the lower outside corner of my eye.  This will reduce the surface area and thus the evaporation from my eye.  I will still have to wear either goggles or the bubble to protect my eye from drying out at night, but should be able to wear nothing in the daytime.  So next week on Tuesday I go to Proctor hospital and they will put me out lightly to do this procedure.  We talked about other options with the doctor like eyelid weights, lenses, and such but she really seems to think this stitch will work and help me quite a bit.  She said it will be totally unnoticeable to most people, so there is not the social implications like there is with a patch.  She considers other options to be more aggressive and we can do them later if needed.

I was talking today with the doctor and nurse.  I told them that for the record "I wouldn't trade with anyone".  We just all need that reminder from time to time.  She was commenting about how this person had breast cancer, this person has some family issue, etc.  To us, it often looks like everyone else has it easier.  But in reality, everyone has challenges.  We just don't know the full extent of what others are fighting many times.  I'm reminded of Paul's verse in Philippians 4:11, "..for I have learned, in whatsoever state I am, therewith to be content"

Other than the eye I have been feeling great lately.  I am eating more, which is a huge pleasure.  I still eat very small quantities by everyone else's standards but was able to eat a whole bratwurst over the weekend.  I think it's been almost a year since I could eat that much.  My feeding tube has been working fine since I got out of the hospital.  I don't entirely understand what was wrong then but it is not leaking now.  It still "pops" when I am hungry in the morning but that just serves to get me up and going.

I was kind of reflecting today, the biggest impediment I have is my challenge with speaking and people being able to hear me clearly.  Because of my facial nerve problems, my words don't come out as clear as most people's.  This is tough for me since my personality is so dynamic.

So big picture, I am really thankful for how well things are going.  I give the credit to your prayers and to God being compassionate to me.

Derek & Leann

Saturday, May 17, 2014

Right Eye

Please pray that my right eye gets better.  I have a persistent corneal abrasion that is not getting better.  I was at the eye doctor again yesterday afternoon.  It causes me blurry vision and some pain in my right eye.  The left side is really good.  He bandaged up my eye but that didnt help much after one night.  I was not putting enough medicated jelly in it.  So we go till middle of next week putting more drops and jelly in it and wearing more bubbles (clear patches) even during the day.  After Memorial Day the doctor who does the stitching will be back in.  I'm hoping by then that things heal.

I don't know why this has gotten me down so much.  I was emotional and just wanted to cry on the way home.  I know it is not that big of a setback but I think it is just a sign to me that things keep getting worse rather than better.  I also felt a bit sick yesterday evening which was the first time in the last couple weeks.

Overall I've been doing good and had a good week at work.  But yesterday evening was really hard, both on me and Leann.  Just pray that we can keep going on despite the setbacks.

Another really exciting thing to me is our new barn is almost finished.  There are a couple small details like the driveway to finish up.  We got baby chickens yesterday and it has been so exciting to see Wesley take charge of things. He does all the work and all I do is supervise to make sure we aren' making a big mistake. We looked up online taking care of chicks so he knows what to watch for. I think it has surprised even me as to how rewarding small things are like this now.

Derek & Leann

Sunday, May 4, 2014


Very thankful that we finally made it home this afternoon.  It takes most of the day to get all the paperwork done at the hospital but by 4 we got home.

Thanks everyone for helping us through this with prayers, visits, and help with the kids.  Many gave rides or came and spent time with the kids so Leann could be with me at the hospital.  It is much appreciated.

Feeding is going okay right now.  I just pray that I can get back on my schedule and the headaches go away.  I made up another spreadsheet this afternoon so I can keep track of everything medicine wise.

Derek & Leann

Sunday, blessed

I want to wish everyone a wonderful and blessed Lord's day.  I'm looking forward to calling in for our church services.  We have received much scripture encouragement from many of you, and we appreciate the daily reminders to keep our focus on things eternal. 

On Friday, we saw a GI doctor who grew up near me, and I so appreciated his insight on Derek's stomach tube.  By 3p that day, we had it tightened up correctly and began to use it.  It has caused no trouble since.  I believe what was happening is that when Derek had an empty stomach last Friday morning (when it first began to tighten/pop and cause trouble), the stomach was trying to process food which wasn't there.  Instead, it tried to "process" the balloon which was there.  So, as the balloon got sucked into the intestines, it would tighten.  Then, because the disk on top of the skin did not allow it to go through, it would "pop" and release it.  So, the answer to this was to put food into the stomach to give it something to process.  Well, instead, he went two days without food as the infection process started.  Then, the slow drip worked well, because it gave food, but we had loosened the disk on the top of the skin thinking it was too tight.  Wrong answer.  By loosening it, when the stomach wasn't full, it had even more give to pull that balloon towards the intestines again.  So, in the end, by tightening the disk correctly and keeping food in Derek's stomach, the tube is working properly, and it did need time to heal up where it had been traumatized by pulling the prior tube out.  Anyhow, that is probably too much detail for some of you, but my nurse friends/sisters appreciate knowing the "reasons" sometimes.

On Thursday this week, Derek had an unusual strong right-sided headache start.  It has increased in pain, so he had to get a fentanyl patch (50 mg/hr) plus additional fentanyl and now dilaudid.  I believe this is from being off of the pazoponib for a week, and the tumors had begun to think they should grow.  It could also be a buildup of fluid around the tumor site.  They give lots of IV fluids to him while here. Thankfully, Derek's counts were all up, the hematologist okayed him to start pazoponib Friday night.  We declined a brain scan knowing that even if they found growing tumors, we didn't want to do any surgery or switch up the chemo right now.  Getting the dexamethasome (to reduce swelling around tumor) at the right dose for Derek is tough.  Too much = hiccups, too little = bad headache.  Right now, he is on 1.5 mg/day which only caused about 5 hiccups last night. 

We've been told he may go home today, and our hopes are high in that direction.  We came in with infection and stomach tube trouble.  Those have been resolved, and I think we can deal with the headache at home.  Please pray the headache lessens either because of dexamethasome, pazoponib, or simply because God wills it to go away.  Sometimes, we never know the causation, and I have to let my little mind rest not knowing. 

The weather has been gorgeous this weekend, and I'm looking forward to seeing if Derek will sit outside a little to enjoy it.  May your day be filled with Holy Spirit abundance.

Friday, May 2, 2014

And a not-so-good day

Yesterday, Derek had been approved to stop the drip feeding to his tube and wait a few hours and start a bolus feed (which is what he does at home by dumping in a can of food all at once).  Also, his blood counts were all okay to restart the pazoponib.  (Two days earlier when I thought we were going to, I learned we had to watch multiple counts, not just the one they had told me, so now they were all above what they wanted to see.)  So, it was an exciting afternoon for a couple hours.  Then, his head started hurting on just the right side and his right side of his face.  The normal pain med he was ordered did not take it away, just lessened it.  This morning they have upped that med, and hopefully he will have full relief from that pain.  But new pain like that probably isn't a good sign.

Then, just before I was going to bring the chemo over from home last night, the nurse put some regular meds through the stomach tube, and it leaked all over.  Thankfully, that was not the potent chemo drug dripping all down his skin.  The tube had not been leaking much at all.  Also, the contracting/popping he had experienced in the ICU with this tube started up again and was doing that constantly, much worse than earlier in the week.  This causes pain, and he was pretty miserable late last night.  Also discouraged, because of the setbacks.

So, this morning we are supposed to see a GI doctor or surgeon to look at this stomach tube and get it figured out.  It's been a problem from the start, so I hope they just put him to sleep and replace it with the old style tube that he liked, but we will see.  Also, they referred him for an appointment with hematology supposedly to determine "why" the blood counts dropped.  This is somewhat frustrating for me.  They dropped either because of the new chemo or because of infection, but I don't understand how they will know which caused it, and even if they know, what are we supposed to do about it?  He can't reneg on the chemo they gave him (the 2-month dose one), and they can't keep him "infection-free".  The only thing we could possibly do is withhold the chemo that WASN'T causing the counts to drop in the first place, and that doesn't make sense at all.  It was working on the tumors and helping.  So, it seems like an unnecessary delay to me on getting the other chemo going again.  Pray for my patience and understanding.

I'm sorry to have this setback.  Please pray for endurance and love love love.