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

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

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!