It is so good to be HOME!!!

We were able to fly home on Sunday.  On Friday, the doctor pulled out the last tube.  What a feeling to be free of all unnatural appendages.  The doctor said we could go back to Utah as soon as we wanted so we moved our tickets to Sunday.  We were so excited.  We did have a fun day on Saturday - being our last full day in NYC.  We went to the USS Intrepid aircraft carrier.  We were able to tour a Cold War era submarine, look at the flight deck of the USS Intrepid, and look at the Space Shuttle Enterprise.  It was a ton of fun.

We took a bus to the theater to watch the  Broadway show Newsies.  This was a birthday present to Angela from her sister.  It was a really great production.  They cast did an amazing job.  Angela was singing along with the music - having a great time.  It followed the Disney movie story line with some minor adjustments.  We both had a wonderful time.

After the show, we took a stroll to the New York Public Library - where the big lion statues are.  We took a bus to Central Park and enjoyed a few minutes looking at the 'pond'.  We talked about how New York is so different than Orem.  We noticed that there are smaller families and everyone is stacked on top of each other.  We did see more dogs than I thought I would see.  There is very little open space and all the buildings are all really tall.  You always feel like you are in the shadow of something.  There was a lot of construction going on - that made us feel at home ; )

Every night at the Ronald McDonald House, volunteers bring in dinner.  It was great to see all these people sacrificing their time and donating the food for the patients and families at the House.

Well, I have been at Huntsman today.  I started a new chemo regiment - 5 days on then 2 days off for two weeks.  Then a week off.  I will do this three times before going back to NYC for my second surgery.  All has gone well so far - we will see how I feel after 5 days of chemo.  Fortunately, we will be able to self administer the chemo at home for the next 4 days.  This will save us so much time and allow me to work more.

Thanks again to everyone who took care of our family while we were gone.  We never worried about their safety and knew that they were being loved for us!

Out Free and Clear

Out Free and Clear :)

Doug was released from the hospital last night at 6:30pm.  He was able to come home to the Ronald McDonald house with me.  Hurray!  Unfortunately the mattress was too hard for Doug post surgery so he had a rough night.  We spent a large part of the day hunting down another solution.  Bed Bath and Beyond came through for us with a 3" memory foam matttress topper.  Awesome!  He had a nap on it and said it was better.  Hopefully tonight will be better.

He did a lot of walking today and did pretty good.  Unfortunately he didn't drink enough water and we are eating different foods so his bowels were giving him a lot of pain tonight :(  We'll pump the liquids and get more veggies!

Doug still has his shoulder/neck drainage tube.  They checked it today and it was draining too much.  I've watched today and there is too much to remove tomorrow either.  So we will see..... maybe on Monday.  We see Dr Laquaglia tomorrow morning and we'll see what he says.  If there is any way we can get away with it, we want to fly back early.  I haven't checked with Delta if that's possible but we really miss the kids and want to come home.  We'll try and play a little while we are here in the city but we have been gone enough.....

On a fun note my sister bought us Broadway tickets to Newsies!  Our first Broadway play!  We go on Sat :)

The Ronald McDonald house where we are staying is amazing!  It is designed for pediatric patients and their families to stay during treatments and medical care.  I talked to a family today that has been coming for 5 and a half years!  Man.  Talk about a long fight.  The little girl is now 9 or 10.  The social worker at Sloan Kettering said Doug and I could stay here because Doug has a pediatric cancer and a pediatric surgeon.  Every evening at 6:30pm different companies come in and cater dinner.  They have 4 huge kitchens with four fridges in each and 4 dishwashers.  We have an assigned spot in a freezer and fridge as well as locked pantry space.  They have muffins and bagels around 9am.  There is a big living room with 2 grand pianos.  Laundry on every floor and they provide the detergent!  Downstairs is a big playroom, music room, and a computer room.  Amazing!  Such a blessing to be here!

Say Good-bye to "Larry"

Exciting news - Larry and I were disconnected.  He has been a faithful companion, but the time has come for us to separate.  The doctor stopped the medication I was on that required me to need Larry for this long.  I am eating and drinking well so I don't need the extra fluid through the port.

I still have the chest tube, but I would rather carry around the catch basin than have to push around the pole.  My fluid output is getting smaller - a little at  a time.  We hope that the chest tube will come out in the next day or two.  The shoulder drain may take a little longer.

The stomach staples should start coming out in the next few days.  They take half out (every other staple) then wait a day or two then take the other staples out if all is well.

They say I am recovering nicely and just to be patient as I wait for the drainage to lower to an acceptable level.  Angela has been working on artsy stuff; I have done some sudoku.  We are enjoying the time together.  We have been able to see the kids via web conference.  That has been really special for us.

Thanks again for all your prayers, love, and support.  We could not do this without you!!!

Lots of Love - Doug

Happy Saint Patty's Day!

No Cancer In the Liver

Hello Everyone - We just wanted to update the status of the "liver".  I had the MRI a couple of days ago and the doctor reported that there is just a pool of blood in the liver - NOT CANCER.

HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is a great blessing.  This means that they are essentially going to ignore the liver and not worry about it.

Heavenly Father is truly blessing us and watching over us.

I will be in the hospital until my chest tube drainage is below a certain point.  It will be a few days.

My bowels are moving along nicely.  My stomach area is feeling better.  They say the incision looks really good.  All things to be really grateful for.

I could start smelling myself, so Angela helped me with a sponge bath and new clothes.  (Showering with tubes is a bit tricky - so we don't even try.)

Thanks again for all your prayers and love.  I feel lifted up by your faith, prayers, and love for me and my family.

Thank you -Doug-

MRI on liver

MRI on the liver today

We moved off the icu to the regular pediatric floor.  Doug's chest tube is still putting out too much so he will have that til sat probably.  He did get to have the epideral and catheter out so less tubes :) The swelling in his neck has stayed down because of the drainage tube.

He had an MRI on his liver today.  There is concern that there might be cancer inside.  The official results aren't back yet but the dr said unofficially it looks promising.  The mass looks like another benign clump of blood vessels.  There's a medical term for that but I forgot.  Mel, where are you when I need you?  :)  We really really hope that is what it is.  Doug is exhausted tonight - laying still in the MRI really wore him out.  So he is already asleep (its 9pm).  We'll report more tomorrow.

6th day after surgery - progress

Well, today has been an eventful day.  I was awakened early in the morning by a throbbing in my neck.  Yesterday, my neck (where the lymph nodes were taken out) swelled with fluid until it was quite uncomfortable - painful in fact.  So, the doctor drained the fluid and put on a bandage.  Even before going to bed we could see the fluid building up again.  So, it was no surprise to me that my neck started hurting again - I just was not expecting it at 4:00 AM.  We figured out that ice packs took the edge off the pain.  We made it through the day and in the afternoon (about 3:30 pm) the doctor installed  a pump and pumped out all the fluid.  The pump also sucked down the skin tight so the tissues would squeeze together and somehow stop the leaky drain.  My neck is still a little tender in places but there is no pain.  This will need to be in for a couple of days before they consider taking it out.

The good news is that I did get one of my chest tubes taken out - the smaller of the two.  (This may have happened yesterday).  So, at least I don't have any more tubes than I had before.  Tomorrow looks really promising for the chest tube, epidural, and catheter to come out.  I will also be changing rooms tomorrow.  It will be a BIG day.

I was able to start eating solid foods today.  I had 3 vegetable pot stickers then called it good.  I do not want to over do it.  So far it is settling well.  We will see how the night goes.

The BEST part of the day, was a visit by Elder Berube and Elder Richardson (or Richards, from Idaho).  Many of you know Elder Berube from our stake and our family connection (his sister is married to Angela's brother).  They brought a wonderful spirit with them and shared an inspiring message with us.  They administered to me and made Angela cry.  It was such a wonderful experience to have them here.  They are full of faith and ready to do whatever the Lord asks of them.

We hope so much to leave a positive impression on the staff here at MSKCC.   Angela has already enlightened some people that Mormons are Christian.  We will try to follow the spirit as we interact with different people.

I am hopeful for the future and know that Heavenly Father and Jesus are watching over us.  They know each of us and all of our trials.  If we trust in them, we can accomplish all things and accept all things that we are sent here to earth to do.

Tha ks again for all the love ans support.  -Doug-

4th day awake after surgery

I was told that the first three days after surgery are the worst, then it starts getting better from there.  I think that is true in my case.  I don't have some of the sharp pain when I cough and I am able to do 4 laps at a time.  I technically should be moved to another unit since I am doing so well, but they are keeping me here for now.  I think it is easier for the doctor to track my progress.  

They say my incision is healing well - I have not counted the number of staples though.  I feel bloated.  I have 25 extra pounds of fluid that should come off in the next few days - that will help.  I feel something happening in the bowel area - anticipating the big breakthrough.  

There is still tightness and soreness, but I did get a 'sponge' bath of sorts today.  Feels better to feel cleaner.  It will be nice when the chest tubes come out -  they say it will be easier to breathe.  The temperature of the room fluctuates somewhat during the day - we finally decided to ignore it instead of changing the thermostat multiple times during the day.  Angela is working on another wonderful painting.  Most of the staff have commented on how they like it.  I am sure it will be one of her best.

I am getting some fluid build up by my neck incision (on the left side of the neck, by the collar bone).  One of the doctors said it was a common side effect with lymph removal.  They will eventually go in with a needle and drain it if it does not resolve itself.  

Thanks again to everyone for their prayers and help with our children.  We truly feel loved, supported, and watched over.

Love to you all.   -Doug-

Mormons are Christians?

Mormons are Christian?

We had to be at the hospital at 6am thur for Doug's surgery.  They took him back at 8am and then all I had to do was wait..... and wait..... and wait (the surgery wasn't done til after 6pm).  I knew this beforehand so I came prepared.  I brought books, a painting, etc.  

I set up in the cafeteria and started painting - for 4 hours.  That is not a normal activity for a hospital cafeteria.  I chose this because I was under a lot of stress and painting helps calm me down and is a gentle distraction.  It turns out to be a great conversation starter also.  A lot of people here are Catholic and the painting really touched them. Conversation goes like this:

"Where are you from?"

"Utah"

"Oh really? Are you Mormon?" (everyone from Utah is Mormon?!?!?)

"Yes I am."

Pause.  They look at the painting.  They look at me.  The painting is Annie being held in Jesus' arms.

"Mormons are Christian?"

The first 2 times this happened it was kind of fun.  I explained what our real name is, etc.  By the time I was on the 4th person I was ready to beat my head against a wall.  Either we are doing a poor job of opening our mouths and letting people know what we really believe and what we are really like, or someone is working overtime to spread the wrong impressions.

Or both.

So lets OPEN UP FOLKS! I haven't ever gone off on missionary work before but this experience really made an impression on me.  We need to talk to everyone around us, about everything.  We don't have to plan a religious conversation - just be open and friendly and God will direct the conversation.  I've heard this misunderstanding about us and Christianity is common but until I ran into it 4 times in one day I didn't really believe it or see how prevalent it is.  My goodness!   Sigh

Anyway I paint in Doug's hospital room when he takes a nap.  If I feel like more missionary work I'll set up in the cafeteria again :)

How am I feeling?

Angela mentioned that she keeps getting asked how I am feeling.  I appreciate all the concern and love that so many are showing.  I will to describe how it feels after major abdominal surgery.

First of, I feel like I have a watermelon stuck in my belly.  Everything is swollen and tight - please no thumping.  The epidural keeps things from getting painful - keeps it at the 'sore' level.  The chest tubes coming out the side of me are sore on occasion - like when I am done walking.  They say it takes 14 laps to make a mile.  I thought I was done with laps at Huntsman, but I guess not.  The incision down my stomach seems to be healing well and I do not have the pain thanks to the medications they are giving me.

One of the most annoying things is ITCHING!  I heard on the radio once that it is psychological and that you can think away certain itches.  I have been trying to ignore them - it works sometimes.  Angela has scratched my back a couple of times and it felt OOOOHHHHH SO GOOD!

The days go by somewhat quickly.  I have a routine where prayer and thanksgiving are in each step.  I wake up stretch in bed for a bit.  I see if I can stay awake.  If so, I get help and get out of bed into a chair.  I sit in the chair and do breathing exercises for 15-30 minutes.  Then I go for a walk.  Yesterday I did one lap at a time; today I am trying two laps at a time.  I am up to four laps so far - almost to go out again.

Coughing is a tricky thing, because it cause temporary pain (not too bad though), but is really for my diaphragm and lungs.  Major sniffing also helps the diaphragm.

Well, I am sore and I have to shuffle when I walk - but they tell me I am making progress.  The goal is for my bowels to start working on their own.  A 'fart' will never have felt so good (sorry if this was too crude for anyone).

I love you all and pray for you as you pray for me.
-Doug-

Missing the Kids

Posted by Ange:

This is a thoughts and feelings post so if you are looking for facts, please wait for the next post.

We are really missing our kids now.  We didn't miss them this quick in Vienna but there we were having fun and here.... not so much.  Annie has figured out that we are gone.  She did pretty good the first few days.  Friday night she didn't sleep well and yesterday when she woke up from her nap she was very, very sad.  I cried to hear that she is struggling.  She is so young and needy.  She was with me every part of every day.  We had our own songs and jokes and stories.  I would hold Annie close at the end of the day and sing songs and pray and think.  Having her snuggled against me helped the world seem right.

Only a very compelling reason, life or death actually, would cause Doug and I to be so far away for so long.  Families are meant to be together, forever, so being apart feels wrong. Of course.

So I prayed and asked Heavenly Father that He would send comfort to the kids, especially Annie.  Let them know that even though we are still far away, we love them, and think about them, and are aware of them.  I don't want Annie to forget us while we're gone.  I want her to still know our voices and what we look like.  I asked Heavenly Father that the kids could feel our love through the love of the people who are taking care of them.  I asked my sister to give Annie a kiss for me.  I wish I could feel her soft cheek and smell the perpetual peanut butter in her hair.

And then the epiphany struck and I had to laugh at myself.  I'm sure Heavenly Father was smiling too.

He knows exactly how I feel.  He is doing the same thing.

We were with Him before this life and He held us close.  We had our own stories and songs and laughter with Him.  Only a very compelling reason, spiritual life and death actually, would cause Him to send us down here to earth.  Families are meant to be together, forever, so being apart feels wrong. Of course.

He wants to send us comfort.  Even though we are far away, He wants us to know that He loves us, and thinks about us, and is aware of what is happening.  He doesn't want us to forget Him while we are gone.  Heavenly Father wants us to know His voice still, and what He looks like and is.  He wants us to feel His love through the love of other people around us, who are helping to take care of us.  How His heart must ache as we struggle and are very, very sad.

He's been doing this for a long time, so I can do this for 3 weeks.  I guess we learn the strongest, most distinct lessons when we hurt the worst.  Wish there were an easier way, but I probably wouldn't learn the lessons as well or as deep.

Enjoy a Few Pictures

Wasn't it great to hear from Doug!  Here are few pictures Angela emailed me and asked me to stick on the blog.

Also, feel free to follow us on Facebook for more information.  Looks like Doug and Angela had a little fun in NYC before surgery.

Doug and Angela at the Ronald McDonald House--home away from home.

Top of the Rock in NYC!!

The view from Rockefeller Center. Yes, that's the Empire States Building. 

Doug before surgery.

Post-Surgery Fun

I have chosen to keep my eyes closed when it comes to some of the tubes coming out of me.  I have a chest tube that I have only seen the drainage from - two of them actually.  They connect on the side of me so I can't see them anyways.  They should come out today or tomorrow.  I had a stomach tube that came trough my nose - that has been taken out.  I used to be on oxygen, but they took that away.  I have other drainage tubes.

I did not realize it, not having had this major of a surgery, that your bowels go to sleep and have to wake up.  The best way to get them to wake up is to walk around.  To walk around, you need to feel well enough.  To feel well enough, they give you medication.  I have an epidermal and they feed other things into my port as needed.   

My abdominal area is very tight but we have been walking (two laps so far).  I hope to get in 3 more laps today.  These laps are not as big as huntsman laps, but they take longer as I shuffle down the hall.

Gotta take a nap - following asleep.  -Doug-

Surgery Went Well

Angela texted me and asked me to share.

Good News: This first lower abdominal surgery went well.  Doug didn't lose much blood (something they were concerned about) and overall had a great response to the surgery.

Bad News: Doug's liver doesn't look right.  The surgeon is worried that he might have cancer inside. Doug and Angela won't know for sure until next week when the results of the biopsies come in.

A huge thank you to all who have been keeping the Kotters in your prayers.

Pre-Surgery Clerification

We met with the doctor today to go over the surgery and answer any questions we had.  We got some clarification about the surgery and realized we had misunderstood some aspects about the surgery.  This surgery is focused on the abdomen.  There will need to be a second surgery to remove the tumors in the chest area.  There will NOT be an incision from the neck to the pelvis.  The incision will be from the bottom of the sternum to the pelvis. This actually makes sense, since my chest bones would be in the way if they cut any higher - why didn't I think of that before?  The doctor can get the tumors that are in the lower part of the chest, but the ones by my heart he will have to do at a later time.  But, he is going to get the tumor out of my neck.  That is just a small incision he said.  So, he is going to get all of the tumors out that he is able to.  There are tumors throughout the abdomen, some by the rectum and liver. He is going to remove part of my liver that has a mass in it.  I may also lose my spleen.  Complications are possible, but we will not speculate.  We will trust in the blessing from heaven to guide the doctor's hand.

This surgery will last between 6-12 hours (down from 12-14 hours like they told us before).  Angela was great at asking the pointed questions about the surgery, the outcome, and if it is really all worth it.  It came down to this - we are going to do everything we can (as the Spirit confirms) to rid my body of this cancer.  There are not many survivors, but there are some.  There is another treatment at the National Cancer Institute in Maryland, involving immunotherapy.  They recommend that I look into that when I have finished the NYC protocol.  I will have chemotherapy after the first surgery, then have the second surgery about May - if all goes well.  Then I will have radiation and chemotherapy.  The doctor did say that the abdomen may have to be done in two parts also if there is too much bleeding.

The doctor kept asking me if I understood what was going to happen with the surgery.  I assured him that I understood what he was saying, but never having had the surgery before, there would probably be things that surprised me or things that I did not anticipate with the recovery.  This answer did not seem to satisfy him completely.  It made me think of times when you tell a child something and they nod yes like they understand, but do not really understand because of their lack of life experiences. He would also use the phrase, "I don't mean to upset you, but ..".  In looking back, I do not recall acting upset or saying things that would suggest I was upset.  He must have many patients that do get upset and concerned when they hear the prognosis for this type of cancer.  Most (almost all) of his patients are children.  As a parent, I think I would show more concern and be upset if it were my child going through this.

I have received a confirmation form the Spirit and that is good enough for me.  I know that it will be a tough recovery, but He will help me through it.  All things can be accomplished when our Savior is with you.

Please pray for me and the doctors that all will go well and that I can recover - according to His will.
I am trying my best to exercise the faith to be healed so that whatever happens, I know is His will.
Thanks again for all that you do for me and my family.

-Doug-