Monday, December 31, 2012

Happy New Year!

Our fond farewell wishes to the year 2012....a year where we learned and grew more than we ever imagined...(whether we wanted to or not! )  
9:00pm has come and gone at our house.....the ultimate boring time that has been pegged as the turn of the year, so this little family can celebrate, enjoy each others company, and go to sleep at a decent time to insure optimal moods and outlooks on life.  Surprisingly we had a delightful meal on a beautiful table set by Whitney and the little boys.  Whit is the ultimate party planner. We drank our selves silly with sparkling cider, played a few games, and let off some fireworks to frustrate the neighbors.  We know how to party around here!  Luckily our children are still relatively small and easily entertained.  We plan on keeping it that way!

The Pyro Crew
Earlier in the day......we accomplished the first day of Chemo after not so RAD, Radiation!  Jeff seemed to hold most of the anxiety going into the treatment center this morning.  I slept well and felt chipper and surprisingly happy.  I love the nurses at the center...and was excited to see and visit with them in the Chemo Suite.  I found myself trying to remember all of the tricks that I used, to make me more comfortable when all of the Chemotherapy side effects rear their ugly head.  I am confident that they will return to my mind.  

As we got ready to be by the Cancer Center by 8am, we rolled out of bed into a very cold bedroom and realized that our furnace had crapped out during the night.  We left with our children drinking Hot Chocolate and sitting by the fire.  Thanks to some great friends and neighbors, and the warranty on our home we had someone over to check it out in and replace a sensor in no time.  Jeff had to leave me during my infusion to take care of the furnace guy, and came home to happy kids who had again been spoiled by my aunt and uncle, who dropped off a treat.  A good friend came to the hospital to sit with me and then drove me home.......Thanks Adrian! 

And as for my side effects.....I feel a little green and am drugged from the anti-nausea meds.  I have been reunited with my fannypack that is stuffed full of the 5FU cancer fighting magic, and the accessed port that squeeks when I move or breath . They totally, totally bug.   I am also bothered by the smell of Chemo that permeates my body.  (I really hope I am the only one that can smell it.)  The Neuropathy tonight is however minimal.  My hands and feet are sensitive to the cold....but the pain (to cold) that I usually feel in my throat is present on my tongue.  Weird.  I am enjoying some hot flashes that are making me feel old and menopause-ish...but they wax and wane and then disappear.  Definitely tolerable on the Cancer Sucks Scale!  I am happy that today is over and that infusion #7 has been smashed!  I am feeling tired and sore tonight and want to get some good rest in.

I loved this quote from a friend on facebook!  I loved it!  Enjoy! 


Happy, Happy New Year!!!

Saturday, December 29, 2012

Getting ready for more...

Christmas has come and gone.  It was great to have some time off and hang out together as a family. It seems to take so much work and preparation and then be over too quickly.  JaNae was feeling better overall but still tired and achy.  She was originally scheduled to re-start chemo the week before Christmas but she changed her mind and rescheduled for New Years Eve... what a way to ring in the new year.  It's been hard to watch her anxiety grow as the chemo start date grows near.  She is not going into it naively this time.  I know the next few months will not be fun or easy but the end of chemo is in sight.  We need to plan a celebration.

I turned 40 and DID NOT freak out about it. (Which is good for me.)


This weekend, her brother from Seattle is visiting her parents so she took the kids and went down to her parents' house while I was working.  After a long day in clinic, I drove over to meet them.  I was very tired  and got a late start so after I loaded up my stuff and the ski gear for the kids, I got a huge brew (mostly Diet Mt Dew) and set off.  It was cold last night and the moon was full and bright.  As I drove, I had to keep active to make sure I stayed awake. I once fell asleep driving and have vowed to never do it again.  I played my ipod through my truck's stereo and blasted old songs from the past.  I loaded a bunch of songs on there a few years ago and don't play them often so I had forgotten how much variety there was.  I sang loudly and rocked along with songs from the 80's and 90's mixed in with a few newer songs.  I think it was therapeutic for me to have a few hours of loud music that I love.  It was the perfect soundtrack for my moods of the past 6 months... up, down, and sideways!   I thought about a lot of stuff and noticed some things along the way... let me share some of them.

When alone and belting out music... I have a good voice that can sound exactly like Bono, Garth Brooks, The guy from The Cure, All of the Depeche Mode voices, Billy Joel, Billy Idol, Duran Duran, Cold Play and even some female artists. (I know JaNae will be rolling her eyes when she reads this.)

The full moon looks much more clear on a cold night.

When the dash board thermometer reads 15 degrees and you are going 75mph, it takes 22  seconds for your hand to go numb if you stick it out the window.

I searched the sky for UFO's and didn't see any...  I still secretly hope to see one, though I'm not sure being  abducted would so great.

At 75 mph, it takes 48 seconds to go one mile but at 80 mph, it only takes 45 seconds.

Airliners leaving contrails that cross the face of the moon look really cool... I saw several of them right across the moon.

I think the cop I saw in the median was taking a nap while on duty.

2012 went by really fast... I'm having mixed feelings about seeing it end.


-Jeff


Uncle Steve pulling the kids on a sled.

Monday, December 24, 2012

Thursday, December 20, 2012

Today's laugh

We died laughing at this picture from the upcoming movie "This is 40."



The similarities are uncanny.

Jeff turns 40 in one week.  Poor Man.
We like clean teeth...of course.
Reverse the roles and bingo....you have Jeff and me.  Unfortunately.
Holy I-Pad.

Too bad the movie is rated R so we don't have the "pleasure" of filling our brains with inappropriate-ness and crude humor.  ( I watched the trailer and burned my retinas and tainted my brain!)  We totally would have shelled out money to see it in the theater for another good laugh. Our wallets will thank us!
 

Wednesday, December 19, 2012

Postpone---ment

Yesterday we met with my Oncologist.  I was pleased to meet with her and even more pleased to leave..... without getting a Chemo infusion.  We were in and out quickly after the lab tests (which came back improved) and then Jeff and I spent some time together finishing up our Christmas Shopping.  I am so thankful for him and especially his flexible schedule that allows him to be with me.  My home away from home....aka Mountain States Tumor Institute.... is so much better with support.

Skipping out on Chemo is really boosting my Christmas Spirit. And how nice it is to enjoy this season without a chemotherapy induced stupor.  We have been busy with finishing up with the last week of school with the kids, running holiday errands and sewing and baking/ candy making projects.  It feels so good to feel  decent even though I still tire quickly.  The children are excited for their holiday break, and we are looking forward to spending time together with no school responsibilities and/or homework.  

We have hugged them extra tight this week in wake of the recent tragedy in Connecticut.  I am so thankful that they are safe and here in our home.  I am especially enjoying our sweet Kindergartener and the extra time I have with just him during the day.   He is so loving and kind to me.  He is so good to help me in the afternoon by being easily entertained and often letting me rest.  As I was listening to him play after lunch today, he was pretending that one of his favorite toys (lego dragon) was sick.  According to Wes, his dragon was stricken with cancer and needed to be transported to the hospital for chemotherapy.  I was surprised to hear however that his dragon's treatments were unsuccessful and he bit the dust.  Pitiful that my 6year old includes cancer with his imaginative play.  We need to get out a little more! 

And I am not sure if tonight's activity of "Tap Out" wrestling lessons from the full grown 5th child counts....
Pray for me!  :)


Sunday, December 9, 2012

Go ahead and pass out....here I am posting.  The last month or so has been rough.  I either felt like crap, or was sleeping.  Radiation was a lot harder than I expected on my body, but in hindsight I am glad that I was oblivious. Ignorance is my best friend lately.  :)  

Today the baby of our family turned 6.  We celebrated just about the whole week and enjoyed our Sabbath Day with him today.  The anticipation that he expressed was so fun to watch.  I don't know what we are going to do this next week without his enthusiasm.  Maybe we can just be excited about new things that he does now that he is 6!

 Jeff and I took him out earlier this week to lunch and then drove around to different toy stores and let him pick out his own bike.  We also splurged and took the kids to Wreck it Ralph Saturday afternoon.  (We loved it....and then giggled as we sopped up tears that ran down our cheeks as the movie ended!)    If you haven't seen it....we would recommend it!
 
We are slowly but surely getting ready for Christmas and loving the special spirit of Christ in our home.  This time of year is always a favorite....but this year is a little different.  I have really tried to simplify this season as I am still taking it easy and trying to regain energy and strength as my body heals.  It has been frustrating as I am slowly feeling better to not pick up physically where I remember leaving off pre-surgery, chemo and radiation.    I am thinking I have some major muscular atrophy...aka fat, lazy, no muscle tone in those Relief Society arms.  I stirred something on the stove for a few minutes this week and woke up feeling that I had lifted some serious weights at the gym.  Bleh.....  But the simplicity that I am trying to uphold with the hustle and bustle of December feels good.  The kids are enjoying our daily candy kiss countdowns, our special Elf on the Shelf, "Sneaker" as well as a Star Wars Lego advent calender that we purchased last year on clearance.  Our favorite tradition by far has been unwrapping a Christmas book each evening and then reading it together as a family.  Last night I read A Christmas Dress for Ellen.  I had a hard time making it through.  Whitney offered to finish reading it for me at least 3 times.  It is a beautiful story.  A story that I hope my kids can appreciate and remember.  This year has been so hard....but I love the perspective of how blessed that we truly are.  In comparison to many that have lived before us.....the challenges and trials that we are experiencing seem like a cake walk are things that know I can handle and grow strength from.  Jeff has a great job that provides us with the means to feed our children and warm our home.  We are comfortable and blessed and surrounded by so so many great friends and loved ones. 

I am happy and relieved to be in this part of my treatment.   Radiation kicked my trash and I am so thankful to be finished.  The effects were cumulative and it was hard to continue to feel worse as the weeks went.  Not only did driving to the Cancer Center every day for 5 weeks take its toll on my schedule and gas guzzling vehicle, I don't think I have ever been that tired and exhausted.  My hands and feet increasingly became more +dry, cracked and sore because of the oral chemotherapy that I was taking.   As the weeks progressed I had a lot of pain that reminded me of how I felt after my resection surgery.   I spent the majority of my morning noon and night in "my office"!  I really needed to look into a one-way picture window or amazing bookshelf with a plethora of reading material to help me pass the time.  I don't think I could ever admit the number of Sudoku games that I have played and won.  The sheer number is honestly embarrassing!  And I must admit that it is getting quite old.  But here is a little word to the wise.....My Ipad is a bathroom fixture..

On the 29th of November we met with my Oncologist, Dr. Bucur.  It was a hard day, not only because of the idea of starting stupid chemo again....but emotional for me and the unfortunate self pity that I held for a few selfish moments.  As we drove to the Doctor...I received a text announcing the birth of my adorable sister's sweet, sweet boy.  I also knew that my other sister who is expecting would be finding out later in the day the gender of her baby that is due in April.......And I was going to Mountain States Tumor Institute to chat about my insides that have been microwaved and unable to have any more children.  I am truly happy for my sisters and their little families and have since ceased feeling like my life is not fair. I have 4 amazing children that make our home complete and crazy, and I am lucky to still be here to care for them and watch them grow.  I just wish that time would give me a break and slow down just a little.  (Especially with all of the time that I lose in my office!) 

As I talked to Dr. Bucur I was expecting to have her schedule my next chemo infusion appointment for the following week.   They did lab tests and my liver is still inflamed and wanted to wait a few weeks, retake the labs and them tentatively schedule  my chemotherapy.  I was given the option of starting infusions after Christmas but thought I wanted to be the Chemotherapy patient of the year and get the first one crossed off my list the week of the 17th.   Since then, I have gone back for the lab retest.  My billirubin, which they were concerned about, is still elevated but is coming down. We scheduled Chemo for December 17th.    I also saw the Psychiatrist....lots of emphasis on the psycho......which was comfortable and good for a change.  I went alone...aka...without Jeff (who last appointment was a total tattle-tale.)  HaHaHa!  The Dr. encouraged me to think about waiting on the Chemotherapy until January.  And the more I have pondered that idea, the more I have embraced it!  I have been thankful for these last weeks.  It has been refreshing to feel better for a season and to be able to do normal day to day mom things that I enjoy and take pride in being able to accomplish.  We are planning on taking the #7 Oxalyplatin/ 5FU plunge just around New Years.  It is great to have the end in sight and to think about being finished with feeling like garbage in March, if everything goes as planned. Halleluiah and Amen!  Till next time! :)
- JaNae

And until next time....here are some photo gems of the ones I love!



And Holly, we are loving the window crayons!!! 

Tuesday, November 27, 2012

Thanksgiving and Crazy Life


Thanksgiving has come and gone... can you believe it? The end of the year (and possibly end of the world) is fast approaching and life has been crazy.

Over the weekend I looked at my email and there were 420 unread messages...  I have kind of given up trying to keep on top of them.  If you are waiting for a response from us, we will eventually get through them.  I spent some time yesterday deleting the junk and got the number down to around 200.




The last few weeks of radiation were worse than we expected.  JaNae had more pain than we thought she would and it was hard to watch her suffer.  We went to her parents house for Thanksgiving and she was miserable on the car ride there... but by the time we came home, she was much better.  Her body has been healing quickly and we are thankful for that.  We are not looking forward to 3 more months of chemotherapy...  JaNae gets sick just thinking about it.  It's strange how at times she gets a chemo taste in her mouth from time to time.  I can always tell by the grimace on her face and the way she moves her tongue.

During these hard times, we do try to be positive and count our blessings.  JaNae still gets angry at times and questions why she has to go through this. Even though it's late, I wanted to mention some thanksgiving thoughts. As I am writing this it's almost midnight and there are two owls hooting in my back yard... I love it.

We do have a lot to be thankful for...

Faith and our hope in the gospel.
Family
Good health insurance
Doctors and nurses who provide good care for us.
Support from wonderful friends. (People we didn't even know a year ago that have become huge blessings in our lives. We are so thankful for the meals, the gifts, and all of the prayers offered in our behalf.)
Shooting clay pigeons with my brother in law... it was good stress relief.
Netflix (So JaNae and I can watch our favorite episodes of The Office.)
A roof over our heads
An electric blanket for JaNae when she feels cold.
Many more things...

Good night.
-Jeff













Sunday, November 11, 2012

One week of radiation to go.

I went out of town to Seattle for work and had to leave JaNae during her 4th week of radiation.  We are so blessed that her mom lives close enough to come to stay and help.  I'm not sure if JaNae or the kids would have survived without her.  I'm so glad to be back home.

JaNae is feeling the cumulative effect of the radiation.  She is very tired and is having quite a bit of pain in the radiated areas. It certainly makes a husband feel helpless to watch his wife go through this.  On the bright side, there is only one more week of radiation and then she'll have a few weeks to heal before starting the infusions of chemotherapy again.  She has been taking oral chemotherapy during the radiation but it hasn't been nearly as bad as the infusions they put in her port.

One week to go...  wait, is that a light at the end of the tunnel?
-Jeff








Tuesday, October 30, 2012

What a beautiful sky...

Yesterday I went with her to her treatment and tried to get some photos of her...  (JaNae does not like her picture to be taken.)  I did get one of her on the table before I noticed that she was giving me the international greeting from Top Gun.  I was then threatened with bodily harm if I took any more so I just took a photo of the ceiling.  It has little lights simulating stars on a painted sky so patients can look up and imagine they are lying in the cool grass on a summer evening watching the stars.  Though I'm sure it is hard to relax lying on a cold table with your pants pulled halfway down amid the buzzing of machines.  JaNae sarcastically (imagine that) describes it as, "just like heaven."

So relaxing... to look at fake stars.

The only photo I could get!  This was taken 2 seconds before she gave me a real crusty! 


As you all are aware, Halloween is right around the corner.  We went to a party last night that was put on by a very generous family in our ward.  It's the best party of the year and features sky diving super heroes and a plane flying over dumping out candy on the crowd. Our kids loved getting their faces painted and the hay rides.  There was a scary ride for the older kids and they were startled by the maniac with a chainsaw.  Wyatt ended up sleeping downstairs on the couch though he says it was because he couldn't sleep... not because he was scared.

-Jeff

Monday, October 22, 2012

Week #2

As I sit here tonight, digesting the 10 pills that I pulled out of my granny pill boxes, I am excited to be on Radiation Week #2.  The first week was good to get behind me...(no pun intended)....I was able to get rid of the smokers cough that plagued me and blow the radiation/chemo thing out of the water.  At least with my hind sight (again, no pun intended) it was good.  I did have a roller coaster of emotions hit me.  I hope it is acceptable to go from sad, angry, totally peeved, to clam, accepting and them peaceful and happy all within 5 minutes. I think that it is all part of this whole process, but it is rather exhausting and a amusement park ride that I wanted to exit months ago as I embraced this diagnosis and journey. But I survived and felt halfway decent and am hoping that this week will treat me the same.  And by surviving, I include not attacking a young whipper snapper that stole my parking spot on the way into the cancer center, and not poking the eyes of a cute little granny that has her radiation appointment just before mine.  She has asked me a few times if I work in the radiation dept...I have been polite, but I have wanted to scream that I am here for the same crap that she is.   On Friday the radiation machine was down and I was surprised to see the entire waiting room plum full when I arrived.  Thankfully, I only had to wait 40 minutes to receive my zapping and was pleased that I did not have to reschedule... I am hopeful that I will not have to postpone or prolong any more of this "blessed" treatment! 

Today, things at home and treatment went well.  Our oldest stayed home from school as he was ill with the stomach flu.  (We are praying that he is the only one that is affected.)  By afternoon he was feeling a little better and was helpful with our youngest, especially when I partook of my daily nap that keeps me afloat.   I do keep chuckling about a conversation that came up this morning.  As I ran to my "office" for the 5th time in one hour, I yelled, "I need a rectum!"  The kids had a good laugh and our oldest in his infinite wisdom asked if I could ever get a rectum transplant.  I corrected him on the proper terminology, that would be rectal, rather than rectum.....(cause I am smart like that)....and then was completely disgusted about the thought of a transplant.  And then our conversation unfortunately turned to the thought of an animal donor....as in a monkey or a pig.  And I wholeheartedly and partial colon-ly exclaimed that the last thing that I needed was a pig or monkey butt.  His response was..."Oh Mom, I am sure they would hose it off before they put it in!"  We are seriously still laughing! 

And on a more serious note....
Tonight Jeff and I sat down with our children for our little Family Home Evening...aka organized chaos.  We pulled the Cancer Card that is becoming well used and watched a few Mormon Messages.  When it comes  to the history of Johnson FHE's, besides times when the kids actually fell asleep or were sick and drugged, tonight's behavior was commendable.  Our favorites of course were Things I Learned as a Boy and The Coat.  As we watched these together as a family, tears streamed down our cheeks as we felt the spirit of charity and thought of how we have been blessed by all those that surround and lift us up.  I am so thankful that I don't have to endure this journey alone....and hope that through the service that has been rendered in our families behalf, that all of you have been blessed as well.  It has been humbling to be on the charity side of things, but we are so incredibly grateful.  Our love to you all!

Tuesday, October 16, 2012

Getting a good zappin!

The sign on the treatment room.  

Well,  this is Jeff.  JaNae has been kind of a slacker so I guess it is up to me to fill everyone in.  I don't blame her for slacking though, she has been super tired and not feeling all that groovy.  We thought the 3 weeks she had between chemo and radiation would be a time where she felt wonderful and we could have some fun but it hasn't panned out that way.  She caught a cold that went to her chest and has had a terrible cough which has kept her feeling yucky. Luckily she didn't get pneumonia despite her suppressed immune system.

Then last Monday, she had an appointment with her butt doctor (I mean colorectal surgeon) and he did an exam and found a nodule at the anastomosis (where the colon is reconnected).  It was biopsied and we spent 3 sleepless nights worrying about whether the cancer had returned.  It ended up just being some inflammatory tissue with no cancer, so we were very relieved... but nobody can describe with words the stress that something like this brings.

Yesterday, she had her first radiation treatment and it seemed to go well.  She also started the Xeloda which is the new chemotherapy pill she is taking while doing the radiation.  I was teaching a lecture and could not go to the treatment so she went alone.  I had begged her to take a friend with her but she refused.  (Yes it is true... sometimes my wife will not listen to me.)  Anyway, she told me she ended up seeing an oncologist who is a partner of her doctor because her doctor was out of town.  She told me that she became emotional talking with the doctor and I was kicking myself for not MAKING her take someone with her.  Today she had treatment #2 of 25 and I did go with her.  The technicians lined up green lasers with her tattoos and I went out while JaNae was locked in a big vault and zapped.  JaNae got to listen to elevator music and look up at fake stars on the ceiling during the treatment. I took a few photos but not as many as I would have liked.  I will try to take more to post so you can all see what the treatment room is like.

Anyway, after the treatment, we were grabbed by the social worker who spent some time talking with us and was concerned about how JaNae is doing. (I think the doctor set the social worker on us like an attack dog.) I know JaNae hates that sort of thing but I enjoyed meeting with her and talking about a few things.  I know the stress of this whole situation has affected our kids and we spent a lot of time talking about taking care of their emotional needs. It was insightful.

I hope everyone is well and happy. We appreciate the love and support you have all shown us.  We could not make it through this alone.

-Jeff


I'm just trying to show how thick the door is.



Monday, October 8, 2012

Give Me a Break!

I have been looking forward to this week for quite some time.  It was about 2 1/2 months ago that I got a free week because my liver enzymes were a little crazy.  A free week meaning that I had 3 whole weeks in between Chemotherapy infusions.  A free week is heavenly....I start feeling like myself.  No nausea, decreased Neuropathy and cold sensitivity in my hands and feet, a little more energy to get caught up on things around the house.  (There are lots of things that get put on the back burner, or pretty much shoved into a closet for another day, ie. laundry, ironing, bathroom floor that looks like it belongs to Sasquatch...etc...)  But to be a total whiner, Thursday morning I started feeling some scratchiness in my throat, and by Saturday I had a full fledged cold and cough with a head that felt like it was 100 lbs.  It peaked Sunday and I spent the day on the couch.  We were blessed to enjoy General Conference together as a family, although I think I watched a minute amount because I couldn't stay awake.  I am going to have to catch up when the Ensign arrives in our mailbox.  I have been of course, frustrated at my retarded immune system and mad that this hideous cold came on my off week, and the treasured week that I finally feel good, but I am thankful that I don't have a cold and pant peeing cough, on top of nausea. 

I am still feeling cruddy today and this evening, but enjoyed a beautiful nap this morning after the kids left for school.   I am sure that there is no where to go but up....especially after my dreaded appointment with my surgeon in the morning.  He is going to violate check the anastomosis.... lay mans terms....he is going to look up my butt at the surgical site.  ( I can't believe I just wrote that!  My apologies for most of you....TMI as far as you are concerned!)  Anyone want to trade me places?  All I know is that I am going to hide some zanax, cinnamon candy, chocolate,  and soda in the car and drown my embarrassment on the drive home.  It is going to be epic!!! 

In closing, I thought I would include a Top Ten List of our latest happenings. 

1.  General Conference...totally has to be #1.  Instead of being semi-annually, why can't it be quarterly?  I am going to write the 1st Presidency.  We were inspired, uplifted and energized while in our P.J.'s, and thankful that we didn't contract Diabetes because of all the sugar we ate. 

2. Good, good friends coming to visit the Cancer Patient. This may be the very best part of this whole journey!  We are so blessed and feel so loved, especially when we sneak into the travelers hotel pool and forget we have children as we tell stories and laugh ourselves silly!  Love you Eddie's!


3.  Walker pulling hair out of almost every meal that is served to him.  For some strange reason, it is only him that finds it!  Poor Kid.  And seriously, it seems like Sasquatch has invaded our house and shed it's winter coat.  I truly am blessed to have a mop on top of my head....but for all that we find and clean up, I am surprised at what is still left on my scalp. 

4.  Whitney using my "Cancer Card" to get out of stuff at school.  She has been habitually forgetting her violin for Orchestra Class.  Her excuse has been that her Mom has cancer and has not been good at reminding her to bring it. What a stinker!

5.  Downton Abbey Season 3 sneak peek!  It doesn't air until January, but I have friends (and sisters) in high places.  Man, that show is good.  Just the right amount of drama + smuttiness to keep me happy.  (Maybe this should be #2?)  Here's the Link.....And you are so, so welcome!

6.  Wes the Kindergartener, who is not yet reading, has aquired quite the knack for recognizing all of the "letters" from my doctors.  He is becoming quite the fun sucker as all the "letters" are big fat bills!  :) 

7.  Whitney taking over Family Home Evening.  It is so great to have kids old enough to give a lesson, and Whit is the queen!  She is going to make a superb missionary and mother someday.  Our favorite part of her Word of Wisdom Lesson was calling a picture of Campbells soup, Cannibal soup repeatedly. 

8.  "JaNae Feels Like Crap, Wish the Kids Had Something To Do" Box.  Pretty much the best thing on earth.  Holly and Darrin nailed it.  Here is one candy necklace masterpiece from the box from heaven.....(Minus the Fruit Loops that were enhaled way too fast for the licorice string.)


9.  My fabric stash.....I have enough to keep me quilting for 10 years.   It is honestly my Meth!  But, I need to avoid anymore fabric stores like the plague.  My sister Jill will read this one with a smile on her face.  She would rather pluck out her eyelashes that be caught dead in a fabric store.  Dillards shoe department here we come!  

10.  Last but not least, Cancer Casualties.  Wyatt's Crab, "Point" was under the best care of this summer....I was placed in charge while Wyatt galavanted with cousins.  Long story short, "Point" went straight to heaven, because of little dehydration, and I still feel guilty about it.  Not guilty enough to drive down to the pet store, dry heaving at the smell of pet food,  and let him pick another one out.  Hopefully he knows that I love him enough to admit that my platter is full.  Wes and Wyatt dug a groovy shallow grave along the bank of the creek that is in our back yard with weed pullers.  Good, Good Times. 

 

 

Saturday, October 6, 2012

Just a little video for your viewing enjoyment.  Our kids are crazy and our 8 year old makes us laugh so hard!  We have survived another week and are anxious for a good weekend.  General Conference is better than Christmas around here! 


video

Wednesday, September 26, 2012

Wait No Longer....

Here's a post that I have procrastinated writing for about 2 weeks.  So, so sorry.  And thanks for all of the kind comments and nudges to help me get my act together!!
Around the Johnson home, the bare minimum is being accomplished.  The kids are lucky to have clean clothes and food to eat.....I am trying my best to keep things in order, but the fatigue hits me like a ton of bricks every day.  I NEED a nap every day, whether it is at 10 in the morning or 4 at night.  I have decided that 4:00 in the afternoon is the worst time of day to check out  (duh)  ....it is the witching hour when all the kids are home and need to be directed.  My kids love coming home from school, (it's habitually Wyatt's favorite time of the whole school day), but sadly enough, it is the hardest time of mine.  Tonight, as homework, chores and practice schedules, and dinner were being orchestrated, our sweet neighbors brought over a pizza and rotisserie chicken.  Needless to say my little freezer meal that at the time was being defrosted, was quickly stuffed into the refrigerator for another night this week, and the hallelujah chorus from heaven was sung as we devoured the pizza.  We have the best neighbors and friends!  

For the sake of ending the laziness here are some updates....hope I can remember them....My kids have to remind me of the day of the week!

Chemo #6 was on Monday.   We started the day in a rush...woke up late  (no thanks to my feel good sleepy medicine) ...and arrived a few minutes late.  My pet peeve.  I was able to use our favorite driving quote, that always make me laugh.  "Drive like you stole it, but be careful not to kill me on the way to Chemo"  Jeff stayed with me while my port was accessed and then with the Oncologist visit.  My numbers looked good and Dr. Bucor discussed the further chemotherapy treatment that I will have during the radiation.  I will take Xeloda, orally twice a day while I am doing radiation.  It is supposed to be a lower dose that is tolerable.  I mentioned to the Dr. that I am so happy to be on my last infusion of Chemo for a few months, and then she burst my bubble and told me that when I have completed the 5 weeks of radiation, I will be happy to be back on the infusions.  Not what I wanted to hear, but we will cross that bridge when we get there.  I hear that the first few weeks of radiation are not too bad, but the last weeks are trying.  My start date for the radiation is October 15th.  When it came time for my infusions...the party planning committee arrived and kept me company...and laughing hysterically.  For once I did not have a quilt to bind, but they were happy to avoid the granny knitting corner, that keeps most patients occupied.  (Poor things).  Love, love, love these adorable girl friends.  They have filled some gaping holes left by friends in Pocatello that I miss horribly.  So thankful for them.  

I have come to the conclusion that I will not eat anything while having treatment, unless it is Cinnamon Candy.  Each infusion my nausea creeps up to a whole new level, when the complimentary food is brought in.  Jeff, with the recommendation of one of my favorite nurses ordered Meatloaf for me to dine on.  Pass the barf bag for the mystery meat shoved in a bread pan.  The food that they serve  makes the hospital smell turn into an old folks home stench...I have decided to put my big fat foot down and decline any "free" food.  Who cares if my stomach decides to eat it's own lining for a few hours.  Andrea and Lissa took me home, and we stopped and got a quick bite to eat.  I still feel bad that I have no brain and forgot any cash for my own meal.  That's the least I could have done...especially after we watched Jeff try to get his money's worth out of the dinner he ordered for me. 

Last week was a crazy one that will give me a taste of radiation 5 times a week.  I met with my Radiation Oncologist on Tuesday to discuss my treatment.  I was put into the schedule on Thursday for a planning CT Scan and heaven help me Tattoo(s).  Jeff was sure to liven up the conversation, imagine that.  He was sure to bring up color choices, shapes and designs.  But, my choices were rather limited (thank goodness), and I have 5 lovely small dots on my abdomen that will help line up the radiation machine.  I really would have preferred a mole or freckle colored tattoo, but had to settle for hospital grade blue/black.  We have laughed that the blue/black is "slimming" and kinda matches my eyes.  And luckily the pain of receiving my tattoos, was so not an issue. I think I am becoming part ninja when it comes to pain.  :)

On Friday, the 21st, I had my 3rd appointment of the week with Mountain States Tumor Institute, with the psychiatrist....my (sarcasm) personal favorite.  It was however a pleasant visit, which I was grateful for.  She was pleased with how I am doing in the mental department.  I have good and bad days, but for the most part I am surviving and coping with this journey.  

 Chemo #5 was on September 10th.  (I can't believe that I haven't written about it yet)  Both of my parents were able to come up...it was such a treat.  It was smooth and passed without a hitch!

My angel mother has been to almost all of my infusions, (I don't know how she is surviving everything on her plate, let alone, keeping up with what is on mine.)  She has truly been a life saver, and it has been such a joy to spend time with her.  We have kept busy with projects on the days I feel good, which has been so fun, and something to keep my mind occupied.  
My dad, has had a crazy few months with his health, but had the day off and was able to come and experience the whole infusion process.  And what a process it is, and how fun it was to have him there for support.   We didn't imagine that he could beat my record of surgeries for the year, but he has come out ahead, and we are hoping that his #3 in a one month time frame will be enough, and that I won't have to raise the stakes.  His last procedure was a knee surgery, and we are so thankful he is doing better.  It has been hard for his inner mountain goat to stay down and rest....last I heard was that he took his crutches hiking last weekend!  Can't keep that old boy down!  
Thanks for getting that elevator door for us Dad!   
Obviously this picture qualifies as my favorite of the week!

Friday, September 21, 2012

A little nudge...

This is a little nudge to get JaNae to post...  I'd like to tell more about our trip... I'd also like to post about how she got 5 tattoos yesterday but that is not my story to tell.  So please everyone give JaNae a little nudge to post and fill us all in.  You know she is kind of a comment junkie and loves comments right?  Let's fill the in box in her email!
-Jeff

Wednesday, September 19, 2012

Getting ready for RADIATION


The past week has flown by.  We were able to get out of town to hang out in a fancy condo with JaNae's brother and his family for a few days.  We took bikes and got to ride around on very nice paved bike paths through some beautiful areas.  The weather was great and the kids mostly behaved themselves so it was a great weekend.   JaNae was still a little sick from her chemo while I drove but she did well. That night we we all laughing so hard as we all shared our most embarrassing moments that the cancer and chemo were forgotten for a little while.  Laughter is the BEST medicine.  (Things shared are locked in the vault, so don't ask.)

JaNae's 6th round of chemo is this Monday.  Then she'll start taking chemo in a pill form as she starts getting radiation. We went to see the radiation oncologist yesterday and she has another appointment this week to get ready.  They are going to make a cast of her body called a "cradle" that she will lay in so it can hold her in the exact position for every treatment.  She'll get a little tattoo dot that they will line the machine up with to make sure it is in place.  I asked the doctor is she could do a little 4 leaf clover or a heart and then quickly ducked before JaNae smacked me.   She is going to get 25 treatments of radiation over 5 weeks or so depending on how things go.  It will start in about 3 weeks as long as everything is gong well. We have to be flexible because things change.

It is interesting and fascinating to see the psychological changes that take place during chemo.  We once had a friend getting chemo in Salt Lake City who would start getting sick and even throw up as soon as the downtown buildings came into view.  I have found that I have to be careful what I say because if I mention certain things, JaNae gets a wave of nausea and a metallic taste in her mouth.  The scientist in me wants to test this further to see what triggers it... but the compassionate, loving, perfect husband part of me is able to keep it in check.  Hopefully she'll post some photos of our trip soon.  (hint hint)
-Jeff







Friday, September 7, 2012

September

School is now in session and we have completed the 2nd week.  I am still in awe of how fast time is flying although some moments seem to drag.  (Especially when I think of treatments and what I have to look forward to over the next few months.  Bleh...)  I went to the store this week and saw the Halloween Stuff ready for purchasing.  I had a sickening rush of emotions.  I want to picket and protest Summer being over.  I am trying not to feel robbed as it seems like I spent the summer in bed, on the couch and in "my office."   Although how can this time of year not be savored.  The cooler mornings and evenings followed by 70 and 80 degree weather is perfect!  And I can't not mention the blissfulness of the children being in school.  When I dropped them off the first day, I came home and cried.  I am not old enough to have them all in school!  Although when I send them off in the morning, I feel like I need to start drinking...as in really drinking.....because the craziness of orchestrating showers, room pick up, breakfast, scripture study, piano and violin for four monkeys, will drive anyone mad!  And the three hours of peace and quiet just barely covers the recovery time it takes to be a nice Mom when they arrive on the doorstep after school. 

Walker--13 who looks real enthused, Whitney-10, Wyatt-8 and Wes-5

Wes is our Kindergartener this year and he is in heaven!  How can I not be so happy for him?  He is so pleased to spend time with friends and we love, love, love his teacher.   He is always dressed and ready to go out the door at the crack of dawn with a smile on his face. 

Wyatt who is hot and cold with school also has an amazing teacher!  We can't believe he is in 3rd grade.  He brought home some cursive homework and my heart skipped a beat.  I know that he will be mastering his multiplication tables shortly too.  Crazy!  I have asked him if he likes his teacher and being 8years old....he responded..." it is better than heck!"  ( We are hoping that it really means amazing....because heck may not be so great!)

Whitney is maturing and blossoming before our eyes.  She too loves her teacher for 5th grade.  I had heard great things about the other two 5th grade teachers and she was placed in a class without any of her close friends and with the teacher that I was unfamiliar with.  She is a teacher pleaser and a great student and we have no doubt that she will be happy and make more great friends.  

Walker is and 8th grader this year.  He has made some great friends and loves being at the top of the pecking order as the oldest  in school.  We love the school that our kids attend and are so pleased that Walker has made the good friends that he enjoys.  It has been interesting (and sad) to watch him go from a boy to a young man who is no longer content with kid stuff and spending time at home with family.  Family is first, but he is having a blast with the gaggle of boys he hangs with.  He is growing like a weed, his voice is changing and has armpit hair that we threaten to shave!  That threat will almost get him to do anything that I request.  I love the leverage!  (Insert evil laugh here!!!!)





As for me this week, I am coming off of a high that was present when we seriously laughed ourselves silly with some great old friends visiting for the weekend.  We were neighbors when we were in school and our oldest children were babies.  It was so, so fun to be together, but it has left a longing for them and other close friends that we wish we could always live by and be together.  This world is so small, but yet way too big to be able to be close in distance and emotion to everyone that we love!   Dang it!  We really have been surrounded by amazing people and friends.....their association (and jokes)  really make life living.  

The perks for our family were endless....dinner, treats, wet pants from laughing, and swimming at the Rich's hotel pool! Good, Good Times!
These beauties worked for hours weaving this frog trap....pretty ingenious if you ask me!  They were taking a break from the numerous song and dance routines that we were pleased to be entertained with! 


The 5 year olds, Wes and Mallory!   Hopefully we can arrange a marriage in about 16 years! 

Cute, Cute Boys who got along like a dream!  Wyatt and Owen



The Rich's brought me THIS box that my children are dying over.  I am torturing them by not letting them dive into it.  I am saving it for the next treatment when I really do feel like CRAP.  I cannot however count how many times they have approached me saying...."Mom, You really look like you feel like crap.  How about we open up that box?"  Thanks, but not now.  

Lastly, for a record of how I am really feeling....The last treatment, #4, was truly the easiest one so far.  I was so thankful, but a little grumpy about discovering that one of the prescriptions that I was given and instructed to take, was the cause of alot of the nausea that I have been feeling.  I was planning on cutting it in half and just experimenting on how it made me feel....but I ended up not taking any of it, and did so much better, especially on the Wednesday and Thursday after treatment.  I am trying to gear up for the next treatment on Monday, but have lingering waves of nausea.  I am trying to decide if it really is nausea....or mental nausea, as the thought of lots of things make we want to run for a barf bag.   (Please don't sick the psychiatrist on me!)
The neuropathy in my hands and feet unfortunately has been worse this session.  I have been more bothered by anything sharp or textured.  When I do any walking that is not a lazy stroll, my feet tingle and sting.  I cannot drink or touch anything cold for the first 3 or 4 days after treatment, and then the sensitivity fades and I am able to tolerate a little.  This morning I was cracking eggs out of the fridge for breakfast, and the cold yolks stung and hurt my fingers.  Frustrating! 
My ugly port, that yes, Valyn, looks like an alien ready to pop out of my chest, is healing and no longer sore, but bugs and annoys me.  My skin is still sporting a hideous green bruise around the port, and the scar is still really noticeable. I think it may be time to break down and buy a gallon of Mederma for all of the scars that cover my body. 
My hair is still hanging in there, in contrast to what my Oncologist mentioned to me the first time we visited.  The fear of it falling out has caused a lot of uneasiness, but I am pleasantly surprised that it is still here.  It is thinning quite a bit, and I am constantly feeling like I am an ape that is being picked by family members. The back of my shirt is always quite the patch of nasty strays....My crew is always trying to keep it clean and hairless especially in public.  Embarrassing!   
One source of pleasantness is the weight that has fallen off this tired body, with only half a colon. The nurses that help with the infusions have mentioned a few times the Dr's wishes of  patients keeping their weight steady during treatment.  My mischevious reply was Watch Me!   If there is any benefit of stupid Cancer Schmancer...it is smaller jeans!  Although after my 3rd infusion, when I had a week off because of my liver numbers being off....I gained a few pounds because I ate like my teenage son.....like food was going out of style, because I wasn't nauseous and everything tasted like it used to!    So here's to a little self control, nausea induced weight loss and small pants! 

-JaNae

Wednesday, September 5, 2012

Last week's Chemo #4


Last week JaNae got treatment #4.  She was very anxious prior to going to the hospital but once there, she was able to relax... though she didn't eat much of the food.  I think she's tired of it... So I ordered her a piece of cheese cake and ate it myself.  It was not cheese cake factory but it did taste good and I enjoyed it. The rest of the week went well.  JaNae felt better after the treatment than she had for any prior treatment.  I think that week off gave her a big boost.  Then over the weekend we had some old friends from out of town come to visit us.  It was so much fun, and our kids got along well.  We laughed until our guts hurt.  I was thinking that if laughter is the best medicine, JaNae is probably cured.  It was just so good to see this family and remember the good old days when we lived in an apartment and life felt more like playing house than actual life. We love you guys and hope to get together again soon.




The pump that pumps the poison.
Quilting to pass the time.

The nurse has to wear full safety gear just to inject this stuff.




Reading material and beverage...



P.S.  We received this FART Dictionary from some great friends in Pocatello.  We have enjoyed the laughs that it has provided.  (Allgoods we are behind on Thank-You's....please forgive our rudeness.)
My personal favorite:   The Buzzard Fart....smells so bad that Buzzards circle overhead. 










Monday, August 27, 2012

I am up early this morning.....whether I like it or not.  I should have taken my magic "calm yourself down and here's to a really good night sleep" medicine, but as I went to bed last night I was SO tired and felt like I was above any medicine.  As you can tell...I am a slow learner, and not a big medicine gal....I hate swallowing a truckloads of pills ....even though they help me.  So, after the 4th time of waking up in a cold sweat in anticipation of treatments today, I threw in the towel and got up.  I am not sure I am ready for Round #4 (AGAIN), but it is here.  This free week that I was blessed with has been good.  It has been nice to remember what almost feeling better is like, even though my planned schedule will need some adjustments.   And as the children go back to school tomorrow, we have embraced and loved this last week of summer.  I am in awe of the thought of how fast it has gone, although in some moments I have felt like this summer (from *#@^) would never end.  The children are excited to see their friends and meet their teachers this afternoon when we arrive home from treatment.  I think it will be great to have the structure of a schedule, even though we will morn the freedom that summer gives us. 

This week has been a time of reflection, as an old friend of Jeff's who has been fighting cancer for the last two years, passed away and left a sweet wife and 5 children.  We were directed to his blog through a Facebook friend.  It has been bittersweet for Jeff to follow....He was good at giving me updates, and sharing the amazing faith building posts from this friend's wife, as at most times, I could not bear to read the blog.  They are an amazing family who I have never met, but admire and love.  My heart is breaking for the loss that they feel and will have to endure.  And my prayers are with them that they will continue to feel comfort and peace.

I also received a comment from a friend  of a friend in Jeff's last post, that caught me by surprise.  The last little while, I have ignored and lamented over this blog.  I feel like it has put me out there.....and though this blog has helped inform loved ones and friends of our journey, it is a little violating.  There have been days, that I can't even look or think about it, as it reminds me of the reality of this journey and makes me sick.  This journey that I want to run and hide from.....especially as I think of how long of a road that I still have in front of me.  This blog also creates some anxiety, in that I don't know who is peeking and being informed about my stupid butt cancer.  Anyway....This friend of a friend mentioned her 35 year old brother-in law's recent diagnosis of stage III colorectal cancer.  Hearing of others going through this cancer journey seriously makes  my chest hurt.  I want to take one for the team, and not have anyone else have to go through this.   I was surprised by her comment that this blog has helped her.....inappropriate and violating as this blog is....I am grateful that it has.  And I pray and wish for the best for her brother-in-law and their family. 

Cancer totally stinks....and is unfair....and I despise it....but through all of it I am thankful that I am not alone. How amazed I am at those who surround and lift me up.  I am thankful for my faith, my knowledge of a Heavenly Father and Savior, Jesus the Christ...that through this trial I can cling to them and be comforted.  How grateful I am for the learning and growth that takes place in trials, as we are humbled and broken.  Growth that unfortunately can not be gained any other way, but that is sweet and beneficial.   


We'll keep the updates coming as we leave shortly for treatments.  And after the lack of sleep last night, I am happy to inform you that the "calm yourself down and here's to a really good night sleep" medicine that I was dumb enough to NOT take last night...will be enjoyed with my breakfast and help me survive the morning.  :)

Tuesday, August 21, 2012

Let's do drugs!... or not...

"Let's do drugs!"  That is that the smiling nurse at the cancer center says as she calls a patient's name and has them head to the back for their infusion.  It always kind of cracks me up.  JaNae and I got up yesterday, got ready, and made the dreaded drive to the cancer center in anticipation of her next treatment. She was in pretty good spirits and as I was driving through the morning rush hour traffic yelled "Drive it like you stole it!"

Anyway, as we were going through the process and getting her lab results, we were told that her liver enzymes were elevated and discussed with the doctor possible reasons why. One of the medications she recently started will be discontinued to see if it is the cause. The oncologist decided we needed to wait a week and recheck her liver before JaNae gets more chemo.  JaNae was so happy to have another week feeling well that she immediately announced that I'd be taking her (and the kids) out to lunch... which I did...  JaNae said it was just like getting a get out of jail free card.  We had a great day.

-Jeff

Friday, August 10, 2012

Trip away with the kids...


We had a great time on our trip and I know JaNae enjoyed some time alone with her mom.  Traveling with the kids was an adventure... and there are still french fries on the back seat of my truck.  JaNae is sleeping next to me right now I hope she is getting some rest... it's been 4 days since her infusion and she is still nauseated.  Last night she moved to the couch at 3am because she couldn't sleep...  She seems so peaceful right now, I hope is continues.  I can tell that she has a medicine head and is foggy from the medication she takes for the nausea.  I pray she will be feeling better tomorrow.  Here are a few photos from our trip.  Have a good night. -Jeff






Cousins on a hay bale.





We love mountain lakes...







He took his shirt off to show how brave he was next to the wasp nest...

Sunday, August 5, 2012

Updates

Jeff has been gently nudging/ totally bugging me to get a post pumped out.  I promised I would do it today....i have officially 30 minutes to get her done.  :) Nothing like a little procrastination.

This past week has been good.  I have felt well and am so thankful for the reprieve that I enjoy on the off weeks between treatments.  Thursday Jeff took the kids to the Ranch in Wyoming....their favorite place on this whole earth.  On the way, he dropped me off at my parents in Twin.....my favorite place on earth.  It was pretty much the best weekend ever for all parties.  I have missed Jeff and my little family, but was delighted to spend some time with my parents.  I love being in Twin as I always  run into and catch up with old friends who I love and make me feel loved. Mom and I were able to attend the Temple together and filled the rest of our days with sewing projects.  Dad spoiled us with dinner dates at our favorite restaurants.   I am sure that Jeff and the kids are not homesick and are having the time of their lives.  I have asked him to take lots of pictures to document and share.  Jeff may be a tad bit overwhelmed with keeping track of all 4 as they have plenty of room to run around like wild animals, but they are having some great adventures that the kids will remember and treasure...I giggled and had chest pains all at the same time over a message that he sent me.

In his own words....

Adventures?
We kept busy today.  I took the kids shooting, We caught some minnows, we went for a 4 wheeler ride, Wyatt is mad that I won't build a fire to roast marshmallows but promised to do it tomorrow. Wes "accidentally" headbutted Wyatt and knocked out his other front tooth, as they were sharing the hammock....  Wes has a black eye from falling off the hammock... Whitney fed the squirrels then made cookies. Walker is mad you took his firecrackers.... He has killed several wasp nests and only got stung once. This was my day... I'm going to put kids to bed... Hope you have a great night. -Jeff


They will be home later in the week. Late this evening Mom and I drove back to Boise for my treatments that will be tomorrow.  It will be great to cross one more treatment off my list, but I honestly wanted to siphon gas out of her car so we wouldn't have to come back to reality.  She reminded me that she has a credit card, and that my evil plan would not work.  I am so happy she is here with me. I am a lucky girl to have her.  My hope for the infusion tomorrow is that I will be not be such a big, fat baby.......as of tonight I am feeling tough and ready to kick some serious cancer butt!  Wish me luck!


Sunday, July 29, 2012

Another update

I haven't posted for a few days, I know...  It's been one heck of a busy week for me.  I'm so glad JaNae's mom was able to be here with her.  JaNae called me after her mother had left and was very emotional, she was lonely.  I have noticed that when her mom is here, she and I seem to talk less.  I think it is because JaNae is either sleeping, or working on a project...  You would not believe the quilting she has done.  It's her therapy. (I think she should sell them to support her habit.)  If she quilts enough she might not need that psychiatrist after all.  I'm another story.  I need to find some more outlets for stress.  I was driving the other day and found I had chomped an entire pack of gum... one piece after another by the time I got to work.

The good thing is that JaNae has been feeling a bit better this round.  She was definitely less sick than last time and as of today she seems to be much improved.  The first 4 days after the infusion are bad.  She does have some neuropathy and can't touch anything cold at all.  I was filling the car with gas tonight at Maverick and she ran in to get a gallon of milk.  I noticed after we got home that she had wrapped the handle with napkins so she could hold on to it. 


On another note, our oldest found a wasp nest in the back yard fence.  He decided to take care of it with fireworks left over from the 4th of July.  Here he is in protective garb... and it actually worked.  The wasps are mo more. 


Thank you for the continued support and prayers.
-Jeff