Feeding Tube

This visit to Mayo's has gone pretty much to plan.  We hope to head home tomorrow.  Yesterday we had meetings with a nutritionist to discuss the feeding tube plan.  I'll be getting enough calories to maintain weight through the tube.  Then I'm free to eat through the mouth as much as I want and free to mix our own types of food to put down the tube for nutrition without worring about the calories.  We'll follow that plan till I put 10 or 15 lbs on and then we can readjust as necessary.  The tube was installed today.  I was not under general anethesia but the versed sort where you don't remember a thing.  I'm taking some painkillers now and they figure that will last a week or so and then it will get to normal where I don't have to take anything.

We also had some meetings with PT and they tried some ankle braces for helping my feet when I walk long distances or do stairs.  It's the type of thing I can experiment with to find when they help and when they don't.  They just velcro around my calf and fit inside my shoe.

I'm hoping to go back to work next week.  I've been keeping up via email but it's not the same.  As far as prayers, pray that I can feel more energetic and engaged not just in work but also the family.  It is harder for me to get around these days. We don't know how much is being in the hospital for 4 weeks vs tumor progression.  It's tempting to just sit around but I need to do as much as possible to get my strength back.  We have lots of people helping us and that's great, but if I can do just a little for Leann and the family, I will feel better.

Thanks to everyone for all the cards and emails we have received.  When we were home late last week it took me quite a while to get through the mail.

Love,
Derek & Leann

Mayo results

We are glad to finally be on the way home.  We generally had a good day.  the doctors can't explain everything, but are not surprised by my tumor anymore.  The MRIs show stability and no tumor growth in the spine.  In the head, there is nothing distinct but the area around the brain stem is slightly larger.  This is the area they aren't really sure what is going on.  The PET scan showed no additional tumors other than the little nodules in the lungs.  We were also seen by a doctor  Buckner who deals more with brain tumors that have spread to organs like the lungs.  I had an ENT evaluation which didn't really reveal any solutions but at least we have more explanation.  My right vocal cord is paralyzed which explains some of my voice changes.  The soft palette is also paralyzed on the right side which contributes to the speaking difficulty.  The only answer they have is microscopic or invisible disease that has caused my symptoms to worsen but the scans to look relatively good.
As has been the case all along, there is no well defined protocol to follow.  Dr Buckner has had some success with an oral chemo that I would probably start on.  The main side effect of this is fatigue.  It's a daily pill versus the IV injection.  He's going to wait to decide exactly what we do for another week or two till we have the results of genetic testing on the tumors they removed from my lungs.  There is always a chance the results will point him to a specific drug.  In the meantime he will get started on the insurance for the more common drug.
Next week we are planning to come back for some discussion surrounding a feeding tube and some preliminary scans and blood work for the chemo.  They also want to fit me for some ankle braces to help my walking stability.
The main thing now is just the difficulty eating.  My appetite is getting a tad better each day.  But I still don't look forward to meal time since its so much work.  My spirits are generally good, but I cry every time I think of the kids.  I miss them so much.  We finally said we were coming home today no matter what and we'd go back up again for more.
Thanks for all your prayers and cards over the last couple weeks.  Mom brought a bunch of our mail up and I just cried as I opened it.
Love,
Derek & Leann

Sunday

So I got out of the hospital on Saturday afternoon.  We had some friends come up for the weekend that we spent the evening with.  On Sunday, Leann and her went to our church services at the Apostolic guest house.  The husband spent the day with me and we called in to Tremont.  After church we went to Culver's with one of the couples from a potluck from my childhood days.  I just had to think how much we are blessed now by connections we made when we were kids.  Just one of the many of the blessings of our church congregations.

Pray for my swallowing and apetite.  It's been a real challenge when I am hardly ever hungry.  It seems like an often occurence any more that something gets stuck a little bit in my throat.  It's not like I'm choking, but I start coughing and it's hard to stop.

I miss the kids too.  It was hard to see them go yesterday and even now it brings tears to my eyes just to think of them.

Love,
Derek & Leann

The kids are on their way!

I'm rejoicing that I get to hold Lexi, Wesley, Whitley, and Lainey soon.  We've seens pictures, skyped, and emailed, but that just isn't the same.

Yesterday, they pulled out the left lung chest tube, and there is a small pneumothorax that occurred since then, but they appeared unworried because it was small enough.  As for the right side, they took the suction off at 6:30 this morning and will clamp it later today and take an x-ray Saturday morning.  If everything looks fine at that x-ray, they will discharge us from the hospital in the afternoon. Please pray the lungs stay inflated.

I know I should be excited to get out of here, but then that poses the reality that I will be more in charge of Derek.  Pray I can be up for the challenge.

I hope you all have a wonderful weekend.  The weather is beautiful here!
Love,
Leann

39th Birthday

Today is my 39th B'day.  Leann sent me a video that I have to share.  She got brave and had happy birthday sung to me from the grand piano in Gonda bldg (main hub of mayo's).  Overall I feel pretty good, I've got a decent amount of energy.  Leann had me to the courtyard downstairs this morning so I could feel the outside air.  The left side is clamped off since this morning and then I'm supposed to get an xray at 3:30 this afternoon.  The right side has a few bubbles now and then so we'll have to see what the drs say about that.

Love,
Derek & Leann

Tuesday Night

Just filling you in since the weekend.  We were expecting Monday to be uneventful but then the group of residents came in and said they would remove one tube in the morning, one in the afternoon, and I'd be out today.  When the PA came in to remove the tube, we convinced him to clamp it shut for a while instead of pulling it out.  This would do the same thing to my lung but in the case it was going to collapse again they would not have to reinstall it.  I went to get an xray around noon and felt fine, but thought I saw a little pneumo starting.  As I ate lunch I felt the same pain in my right lung, pain at the end of the breath.  So from these two things we concluded that the lung was collapsing again so we just put the tube back on suction again.  The Dr is out of town.  He had indicated that due to my history, we would take a slow and conservative approach.  Evidently that didn't get through to the residents before he left.  I think it's through today.  So today I pretty much sat around on suction both sides.  I'm notsure if much will happen tomorrow or not.

Lexi headed back home with Leann's folks.  We did skype the kids at home a couple times.  We are getting ready just to be with them and not have to be apart so much.

My attitude has been good.  I've had a fair amount of energy and been up working a fair amount today.

Thanks everyone for your prayers.  It's been a big boost this week.

Love,
Derek & Leann