Thursday, May 31, 2012

It is nice to have her home.

Home is never the same when the MOM is gone, any kid will tell you.  Our house was no exception to this and even with all of the help we had, I am incapable of filling JaNae's shoes in the running of this household. I think she does a better job (even in a drugged up state) than I could ever do.  We are so thankful to JaNae's mom for being here and helping keep our lives in order... I'd be in the loonie bin without her help.

Here she is asleep in her own bed.

It has been rough transition to home care.  She had a terrible time getting out of the car to walk into the house.  She has slept during the day only to lie awake in the night at times.  She has also been the victim of a 5 year old who loves her and tries to give her unexpected and very painful hugs.  Overall though, I think we've been doing a good job caring for her.  We have helped her stand up and lie down.  I haven't dropped her when she needed help standing (which is very good.).  She has also been able to eat some real food and has enjoyed it (even though she has a decreased appetite so far.)

We have an appointment with the surgeon tomorrow to pull her JP drain out and we hope he has some information about the pathology report for us.  JaNae didn't want her picture taken so I snuck one of her feet... she likes to sleep with her feet out.

PS.  The ducks are doing well and growing real feathers.

PPS.  Even though we won't be getting a dog, I was offered a cat today... I wonder if JaNae would mind if I got one... of course she wouldn't! (insert maniacal laugh here.)

Wednesday, May 30, 2012

Guess What!

She's home!

She is coming home!

She will be coming home today!
She is still very sore and moving slowly but the IV is out and we can take her home when she's ready to go.  I'll  take some photos of her (if she'll let me) and post when she's home. We are continually grateful for the love and support.  -Jeff

PS.  These are texts taken from her phone.  This is what happens when an almost 13 year old has a phone and fast thumbs.

"We are coming."
"In the parking garage"
"On the stairs"
"Crossing the street"
"In the revolving door"
"In the front entry"
"Pushing the elevator button"
"In the elevator"
"Pushing 6th floor"
"Riding up"
"Getting out"
"In the hall"
"passing fishtank"
"by desk 2"
"In the doorway"
"Looking at mom."

The 6th night... are we going backwards?

She seems to be more uncomfortable now than she was 2 days ago.  Seeing someone waiting for their bowels to start making some synchronized motion isn't pleasant.  For her, it's beyond miserable.  The pain medicine does help some but she was getting sick... So she was changed to another kind which seems to be an improvement in the feeling sick category but not with the pain as much.  It has been a long day... and our hopes of her going home today were dashed by the lack of bowel cooperation.  I really wish there was something magical I could do to make her better... feeling helpless as a husband really stinks.

At least her bladder is working...

Ardith and Jill visiting

My first post was vetoed so i suppose this will have to do...

Tuesday, May 29, 2012

5th night

Tonight was JaNae's 5th night in the hospital.  In some ways it seems like she's been in there forever and in others it's like the blink of an eye.  Two of the kids have been sent off to stay with cousins so the house is a lot quieter but there are 2 less workers to take care of the ducks.

Tomorrow (Tuesday) they plan to remove her catheter and see how things go.  If her bowels and bladder are working, they'll likely let her come home.  I thought they'd have to use restraints to keep her there this long but it turns out that the adjustable bed is actually pretty comfortable, and the hospital serves some decent tapioca pudding so JaNae hasn't minded being there.  She is still having a hard time with pain control but hopefully it will be better tomorrow.

We went for a walk around the floor with the kids and JaNae was not overly amused with the kids walking behind her and yelling "mush! mush!". Badonkadonk must have gone home because we haven't seen her around...  We did discover that there are framed prints on walls in the hallway and  that many of them have a tiny Waldo (from Where's Waldo) taped on them. The younger kids had a great time running around finding those.

On the way home, Wes ran into the parking garage as a low rider Honda Civic with a large tailpipe drove by.  There was a gangster looking guy driving and as he passed, Wes gave him the "stink eye" and then used the hand signal pointing at his eyes and then at the other guy to indicate "I've got my eyes on you."  The gangsta  guy didn't seem to be intimidated but did take a long double take at our 5 year old as he drove slowly by.  Kids!

It's well after midnight... good night.

Sunday, May 27, 2012

Sunday Night

Sunday had it's ups and downs.  JaNae was feeling great earlier in the day, had visitors, and took several walks.    Later in the day, her pain pump was taken away and she was changed to pills.  She had been used to pushing a button and having almost immediate pain relief but she wasn't using it enough to justify continuing it and she needs to be on pills so she can go home.  Now when her pain is getting worse, it takes 30 minutes before the pain pills kick in. She is quickly learning to ask for a pill before the pain gets bad. Tonight is her 4th night in the hospital and we miss her... once her bowels start working she'll be able to think about coming home.  Let's cross our fingers for tomorrow! -Jeff

Here she is walking with the kids... Remember, I did promise to not post a photo of the pee bag so try not to notice it down there... (The kids are pointing at a spider they saw on the carpet,  I promise.)

On another note, Wes lost his first tooth while eating a bread stick.  It was only a little loose but suddenly popped out. He was so excited to call his mom that he didn't notice she was crying because she missed it.

 When I got home from the hospital, JaNae's mom informed me that the tooth fairy had deposited $5 under his pillow...  he's going to disappointed in the future... poor kid!

Please leave comments for JaNae,  she reads every one!

Whatcha gonna do today?

Seems like a stupid question now but I did ask her that this morning...  She looked at me with her "duh" look and said "Maybe I'll meander down to the gift shop with my pole and pee bag to buy some new earrings...  What do you think I'm going to do?"  Then she started laughing... and holding her belly grimacing in pain and laughing at the same time.  So we made a list of things for her to do.

1. Enjoy her "full" liquid diet.....of warm mushy cereal and broth.  I don't know what is full about it.
2. Sponge bath... wash her hair if they'll let her (She's afraid she looks like Medusa.)
3. Find something good to watch on TV
4. Walk a few laps and build up some speed to pass Badonkadonk.
5. Push the pain pump button every time she thinks about dogs or ducks.
6.  Dream about her own bed and being able to walk around in bare feet.
7. Fantasize about her perfect husband...  sigh...
8. Mentally prepare to go home to 4 children in a few days
9. Stare out the window (with a kinked neck) at the foothills.
10.  Con Jeff into breaking the Sabbath and smuggling in a milkshake.

The ducks... (they are much bigger now.)

Saturday, May 26, 2012

Good Night Again...

I'm sitting by her bed in the dark while she sleeps... I think she really improved a lot today but it wore her out.  The kids were up here and had a good time visiting their mom.  Then I took them to see the movie Mirror Mirror.  I was glad that they got to see a truly evil stepmother so they could appreciate how kind and patient their mother is.  JaNae's parents sat with her all afternoon and I'm told that her dad took a nap every time she did.  Good for him! 

Speaking of dads, one of the nurses kind of freaked me out when I got off the elevator.  She said that they had been trying to get a hold of me because of some complications...  I told her that I've had my phone and nobody called me.  She asked "Isn't your dad Lyle?"  That stunned me! I answered that Lyle is my father and she said he's taken a turn for the worse...  I said, "Are you sure?  He's in Wyoming!" She then blushed said that I'm not who she thought I was... so I rushed in to check on JaNae and she was sleeping and well.  My heart was pounding fast. I realize many people pay good money for an adrenalin rush, but today I'll pass on the anxiety and palpitations.  

Good night and thanks for the support.   Here are a few pics that explain why she is so tired!

JaNae's email she sent to family on May 4th- her own words...

Just wanted to give an update on everything that is going on here. I wanted to call you all individually, but decided to send out the email....sorry that it is impersonal! We have been doing well and trying to wait patiently as all the information has been gathered. I had an appointment with the surgeon this morning. He and his staff have been so great---we were excited to meet with him to go over the findings from the ultrasound that took place on Monday. He was able to look at the tumor and also the lymph nodes that are in the area. He was not able to see that any of them had been effected. So....the options for us are narrowed down, which is a good thing, because decisions cause me stress. This week I also have seen a genetic counselor and have mapped out my family tree and all of the cancers/diseases that both sides of my family have had. It is a crazy gene pool. We have ordered some genetic testing to see if they can find what the problem is. They are testing for Lynch Syndrome and Li-Fraumeni Syndrome. If any of those come back negative, which is a positive deformed gene, it could affect the surgery that they have penciled in for Thursday May 24th. We are waiting (bleh) 3 weeks in hopes that the genetic tests will come back within that time. The surgeon is not concerned with that wait in regards to my health. It is possible that with the resection surgery that I will also have a full hysterectomy. After the surgery they will test the tumor and also the lymph nodes that they remove....and we will pray that everything looks good. And if it does...I will just have to have the resection surgery and not any chemo/rad. That is our hope! And what a huge, huge blessing that would be.

We are so incredibly thankful and overcome with all of the love, prayers and fasting that have been offered in our behalf. We have felt them in our home and are so grateful. Thank you for being so kind and concerned. We are so blessed with an amazing support system....thank you for being part of that. We are staying positive and have faith that everything will turn out well. We are feeling comfort and peace. Emotionally we are a little spent as we have ridden this little roller coaster ride. The next few weeks will be busy with the children as they are finishing up the school year. We will stay occupied in hopes that the next weeks will go smoothly and quickly.
As for now..I need a huge nap and maybe a little bit of chocolate!
We will be in touch!

Love to you all!

This post is taken from Jill's blog...

My sister JaNae was diagnosed with colon cancer this past month.  It has been a roller coaster of emotions for our entire family.  I think we all go from being "Ok, we can deal with this" to breaking down in tears on a daily, hourly and minutely basis.
She had a resection surgery to remove the tumor this afternoon and is currently out of surgery and doing well.  Her husband and I have been texting back and forth and at one point I "may" have suggested that he ask now for a dog, because he will never get her to agree when she not on high doses of pain meds.  She said and I quote..."Hell No!  I'm not that drugged up."  So much for the new pet dog they could have called Rectum or Sphincter or something totally inappropriate like that in JaNae's honor.  
( family copes with tasteless humor)

JaNae will be in the hospital for the next 5-7 days and depending on the biopsy results from the surgery she may or may not have to have radiation and chemo.  We're really hoping she doesn't have to go through that.  Mostly because of the guilt we would feel when we refused to shave our heads in support.  Thank goodness she gave us Walker sisters the free pass on giving up our hair for her.  "If I have to look at myself ugly, the last thing I want to look at is you ugly too!"
(more inappropriate humor)

In the meantime, we are sending our love, support and prayers for JaNae.  
We love her.
We adore her.
We want her to feel better!

With her permission (well...I think I have her permission, I asked her husband), I'm posting a link to the blog her husband is writing to keep friends and loved-ones informed on her progress.

If you, like me, are a JaNae fan...leave her a comment and express your love and concern to her and her family.  It will assist her along with a speedy recovery!

More evidence of Badonkadonk!

Walking down the hall from JaNae's room, I opened the door to a restroom and saw this...  Hmmm....  Badonkadonk has clearly been here!

Walking laps...

Well we have been walking laps around the floor.  It tires her out but is good for her.  While in bed she has to keep inflating wraps on her lower legs to prevent blood clots and walking helps prevent them also. Other patients were walking also but JaNae was the youngest by a decade or two.  While walking, she had to move over while she was passed by another patient.  This particular patient was particularly large and had a mighty generous posterior...  As the lady rounded the corner, she whispered "great! I just got lapped by badonkadonk!".  I started laughing and JaNae begged me not to laugh because laughing is painful for her.  I bit my tongue and cheek to stifle my chuckles and we made it around before badonkadonk lapped us again.   It makes me wonder if that word "badonkadonk or badunkadunk" is a universal word. Does anyone else use it?  JaNae's brother, Jon, is the one who introduced us to the word (at Great Wolf Lodge).  Since then, it seems to keep popping up...  and by the way, I don't mean for another patient to be the butt of our jokes.  

Lightweight... She can't hold her morphine!

This is a video I took with my phone while teasing JaNae about getting a dog.  She said I could post it but she was drugged up when she said that.  I asked about a dog again and the answer was the same.  After watching it, I think she might have threatened to shoot me.  Did anyone else pick that up?  So if anything ever happens to me...  I'm just sayin'!

Friday, May 25, 2012

Down for the night

I just got home from the hospital and tucking in JaNae.  She is not feeling great.  She was able to eat a small cup of pudding and some ice cream.  I helped her get up and walk a few laps around the floor.  She was slow but did it.  While walking, she got the hiccups and I could tell that each one was very painful.

She brushed her teeth with a Justin Bieber toothbrush someone gave her in a care package.  It plays a song while you brush and she started really getting into it for a few seconds.  She even tried to shake her tail but the pain caused her to stop pretty fast.  She asked me to brush her hair for her... in 15 years of marriage, I've never brushed her hair.  It was nice but I didn't know how to get it into a neat little pony tail, so she had to do it and winced in pain at the effort.  She's even sore in her shoulders.  When she was in bed, we watched Modern Family on Hulu.  We love that show and laugh so hard every time.  This time, she was falling asleep during it and I could see that she'd pushed the button on her PCA.  She was so tired and sore after that little walk.  

I tried to take some photos of her walking and stuff but she had seen the blog and didn't like the ones I've posted so far. (I just want this blog to be real and "us"...nobody wears a prom dress to get a rectal resection... and she has no idea how great she looked walking along in that hospital gown.)  She also said it's a dang good thing I didn't post the photo of the pee bag and I promised I wouldn't put it on here tonight.  It sure is lonely at home without her.  Goodnight.  -Jeff

Day 2...

Mom and daughter

JaNae has been sleeping and is tired and "itchy" from the narcotics.  I also think she is kind of bored at times... There was a channel on the hospital TV about how to change a diaper and how to properly hold a child while breast feeding but she wasn't really interested in that.  I left my ipad with her so she could surf the internet and watch movies on netflix...  I'll have to log onto netflix to see what she watches... maybe I'll post it on here though I bet it will be 47 episodes of "The Office"... and all of "Downton Abbey" Speaking of that, if you are a fan and have not seen Downton Arby's, here is a link... it's great!

Downton Arby's

waiting room "airport type screen"
She did get up and walk around the floor and  did well though it tired her out.  She has been drinking and has not been nauseated which is good.  She's being a pretty good sport.  I have a few photos from yesterday I'll add here.  I did take a pic of the pee bag... and have a great video of her mumbling something about H.E. double hockey sticks...  I'll have to think seriously about adding them later.  (She should have never asked me to blog!)

In her room

The "C" card.

JaNae has used the "C" card to get out of a few undesirable things. Mind you she has not abused it and nobody has called her on it.  Thanks to Jill, JaNae now has the proper documentation should she need to produce an actual "C" card.  I personally think it's fitting that I include it in this blog so that nobody who reads it will feel the need to question.  So here it is, her official "C" card.  The opposite side of the card simply has a large letter "C" just so nobody gets confused when she flashes it.

Thursday, May 24, 2012

She's out for the night.

She's out like a light and sleeping for the night.  It was a long day.  Before they let her fall asleep for the night, the nurses had her stand and then sit in a chair for a few minutes. She did great, but just doing that really tired her out.  Her pain has been well controlled.  I'm thankful for that.  I got home and had the most amazing tacos and stuff that was brought over by some great friends. Thank you so much.

She's in a room!

So... six hours after she was wheeled away, I finally got to see her again.  Waiting in a waiting room for that long is a very stressful thing.  I'll have more compassion for people who are worried and waiting for news about loved ones.  I'm so glad her parents were waiting with me. It would have been much harder alone.

She is now in and out of sleep and will wake and talk to me every few minutes.  Pill thinks I should ask if we can get a dog while she's drugged up... as if ducks weren't enough...  (Ok I have to admit that I did ask her about the dog and she said "I'm not THAT drugged up!"  Blast! Foiled again!)

When they brought her in here, they slid her from a gurney to the bed and she cried out in pain a little bit... then they hooked her up to the pain pump. She's been pushing the button and then falls asleep every 15 minutes.  (I think she pushed the button twice when I asked about the dog.)

I have to put this in here just for the record...  Two days ago at a pre-op appointment, the nurse was taking her temperature and her gum got stuck to the thermometer!  It was hilarious.  We loved this nurse because she is so funny and she laughed until her eyes were watering and she was holding her sides.  At a previous visit, the nurse mentioned how she hates feet and can't imagine anyone wanting to be a podiatrist because they see feet all day long.  I said "Well don't you work for a colo-rectal surgeon? Don't you look at butts all day long?"  She started laughing and we all laughed until we had tears in our eyes.  She said that she had never thought about it that way.

Anyway I'm here hanging out in her room and providing a little conversation in her lucid periods... I wonder how much of this she'll remember.  I took a photo of her when they first brought her in here... I may post it later...  she looks swollen in the face...Come to think of it, I'd better get a photo of the pee bag hanging off the side of the bed before she wakes up and knows what I'm doing...  She's going to love reading this blog!

She's in recovery!

I met with the surgeon and he said the surgery went perfectly.  It took about  3 &1/2 hours. He could not see any spread of the cancer so it will come down to the microscopic analysis to decide whether she needs radiation or chemotherapy.  I still haven't seen her but I have been told that she is in the recovery room and is doing well.  I should be able to see her in about an hour.  She'll be on a PCA pain pump so she can control her pain medication and hopefully be comfortable. We appreciate all of the concern and support we have received.  I'll keep you posted on how she's doing. These pictures were taken before the surgery.  Too bad I can't take a video of her now while she's still really groggy...  I bet she'd say some funny things. -Jeff

Kiss this RECTUM goodbye!

Jeff here...
This is my first blog post ever and I'm only doing it because JaNae made me promise that I would post to her blog while she is in surgery.  So being true to my word...  I'm blogging about my wife and the cancer in her tail.

As I write this, she was just wheeled away into the OR. The last words to me were something like "Kiss this rectum goodbye."  Hopefully in 3-4 hours we'll be able to see her and everything will have gone well.

I guess this is where I need to give a little history about her cancer...  just to give kind of an update to explain what has happened so far.  She started feeling like her bowels were changing and she was concerned something was wrong.  She was talking with friends and family who have celiac disease and suggested that she may also have it.  She considered going onto a gluten free diet to see how that would make her feel but I was kind of opposed to it.  I realize some may be offended, but I've been trying to buy extra gluten and put it in a salt shaker so I can add it to my food.  She needed to find a new physician here since we moved so I suggested that she find one and be tested.  Her tests were negative and she was relieved...  but it left us with questions.  What was causing her symptoms?

She had told me before that she occasionally had a little bleeding but didn't think much of it.  She said it was similar to when she was pregnant and had a small hemorrhoid.  (Sorry JaNae to tell your secret... but we are all saying goodbye to your rectum after all!)  Anyway, we were not really worried about it... and then one day she asked me to look in the toilet, and we decided she needed a colonoscopy.  It took a few weeks to get the appointment, do more testing, and then finally have the colonoscopy. As we left to take her to the appointment, our 12 year old said "Mom, just don't have cancer. OK?"

We were so surprised when the gastroenterologist told us she found a mass.  It  was about 5cm in size and located at the junction of the colon and rectum.  The next day the biopsy confirmed the diagnosis, invasive adenocarcinoma.  She had a CT scan the next morning and they could not see any spread of cancer to her liver or anywhere.

We were shell shocked for a few days.  At first, JaNae felt she didn't want to tell anyone.  She told me she didn't want any attention or for people to feel sorry for her.  The very next day, she changed her mind.  "I don't care who knows." she said, "I've done nothing wrong and have nothing to be ashamed of."  JaNae has never smoked.  The only time she ever drank alcohol was when we were on a cruise and ordered a virgin drink and it tasted " a little funny".  Luckily the lady next to us who described herself as a recovering alcoholic had offered to test the drink.  Her analysis was that is contained a hefty amount of rum... definitely not virgin!  JaNae has been a pretty good gal.

Once we started letting people know, we received all kinds of support. Our daughter made blue friendship bracelets to show support.  All of the kids are doing extra chores to help more.  We have had dinners brought in, people watching our kids, hugs, prayers, fasting, and a lot of love.  Our friend Stacy drove to Boise and back just to see JaNae for an hour... that is about 7 hours of driving just to visit.  She had two of her sons with her and I was so impressed at her example of service.  This is something that they will remember all of their lives, driving across the state to be supportive of a friend who is scared and anxious.  She had other friends who brought over what I think was a hat box full of treats and goodies that were all yellow.  They gave a cute note about providing sunshine to an area where "the sun don't shine."   We have had home made pizza that was awesome, delicious soup, and other good food.  Some close friends, the Wilks, brought over about 5 home made dinners that were frozen and ready to bake... those are for after the surgery and I'm so thankful that we don't have to worry about what we'll eat.  Thank you so much to everyone who has served us... you have been a blessing in our lives.

So on with the story... she's been in the OR for about 45 minutes now...

We found out she had a family history of Lynch Syndrome which is a genetic defect of some DNA repair genes.  Her great uncle had colon cancer and his daughter died of colon cancer at age 35...  JaNae needed to be tested for these defects.  We were able to get the results of the genetic tests done on her extended family so her tests could be more focused... we waited for weeks to get the results and they were normal.  Yeah!

About 2 weeks ago, she had an ultrasound (up the tailpipe) to look for local spread or lymph nodes involved... and none were seen.  That was very uncomfortable for her and as they filled a internal balloon with saline, she would squeeze my hand very tightly.  My hand is still sore!  (I'm sure glad it was my hand and not something else... like my throat.)

So this week we have been preparing for surgery...  it has been hard on us a bit.  I woke up to the sound of the sewing machine yesterday and she told me she'd been sewing since 4am.  She's been making a quilt for our daughter. She once told me that sewing is her drug of choice. I'm glad she has something that relaxes her. She has had a good sense of humor and has made several jokes.  She said "If I have to have cancer it might as well be colorectal... at least I'll still have a good rack!"  She teases those who ask her about it by saying "you just want to know about my stool don't you?"  Her mother is not sure where JaNae got her sense of humor but I can say that we have all laughed very hard at times.  Her sister said that laughing while having tears in her eyes is her favorite thing and we all do that around JaNae a lot lately.

She's now been in there for about 75 minutes. This waiting room is very busy and there is a screen telling where every patient is located and what's going on.  It's like being in an airport...  they told us to expect 5-7 days  in the hospital... she told me she's going to bust out in 3! ...maybe they'll have to use restraints.

I hope this was acceptable for my first blog post ever.  I hope you will post a brief note so we know you dropped by.  Thanks for the support and love. I'll be updating this before turning it over to her.  I'm sure she'll want to tell you her cancer tale.