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

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!

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.

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. 

 

 

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! 

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!

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