Saturday, June 29, 2013

A little western...

I took the kids to my parents and JaNae stayed home to rest.  She still doesn't feel up to traveling far.  The doctors said it would be quite some time before she felt a lot better... and they were right.  She seems to be feeling a little better every week but is still wiped out with little energy.  Despite that, we have had a fun summer so far and have tried to enjoy every day.  Here are a few photos from my recent trip with the kids

Whit loves the horses.
.

My nephew splashed this cutthroat out of that little creek behind us and I grabbed it. He's a little stud.

Walker was a trooper leading his brother around.
Wes... showing off his pocket knife to his uncle. (no stitches yet)

Walker holding a calf, getting ready for the branding iron

Pigs are cute when they are small...

Not so cute when grown...

Cowboy Jeff

Branding...

Wyatt has skills.

Sunday, May 26, 2013

A Tale of Two Cancers

The past year has flown by and is still a blur.  5/24 was the 1 year date for JaNae's surgery.  This year on 5/24, her father, Gary, was diagnosed with cancer in his pancreatic duct.  He was in the same hospital in a room nearby where her's was.

 He was not feeling well over the past week or two and suddenly became jaundiced.  He was hospitalized and had some tests which showed biliary obstruction and during a procedure to relieve it, a biposy was taken which showed the cancer.  He had a CT and MRI which did not show any spread of the cancer.  He will be preparing for surgery in a few weeks and have a Whipple procedure which is a major surgery.  He has been told that he will likely need chemo and maybe radiation.  We are now starting another cancer journey with someone we love and admire very much.  About 10 months ago, when JaNae was just starting chemo, her Dad had some symptoms that were concerning but at that time, no cancer was found.  We were so relieved then that he seemed to be OK, now the diagnosis has been made, our hearts are very heavy.

He asked me to post this to let friends and family know.   We have been trying to get our lives back to normal as much as we can...  but the diagnosis of cancer in anyone you love changes your life forever.  




We will be starting a blog for his cancer journey to keep loved ones up to date on his progress.  Here is the link to his blog Kicking Cancer in the Pancreas.  Just for the record, I wanted to call it "Cancer is a pain in the PancreASS" but was vetoed.
-Jeff

Monday, May 20, 2013

Spring...

I know we haven't been posting much on here...  There has not been a lot to report.  I totally wish I could say that JaNae feels totally awesome and is full of energy but I just watched a good TED talk and decided to not lie.  She still feels like crap.  It's been hard on all of us. But she is getting a tiny bit better every day.  In the past month she has had a CT scan and a colonoscopy and is doing well over all.  As far as we know, she is cancer free and we just have to watch, wait and monitor closely for any recurrence.  We appreciate the concern and support from all of you.

In the meantime spring has sprung.  We had a duck nest along the creek right behind out house and wondered if it was from one of our ducks.  They all hatched and swam away.  It made me think about getting some more ducklings to raise again but... that thought was vetoed.

I did get a chance to take the kids fishing at a friend's pond and they had a great time catching fish. Wyatt and Wes each caught quite a few... Walker didn't have luck fishing but enjoyed his time canoeing around while removing hooks from the fish caught by 2 young women.  He seemed to really enjoy that.






Wednesday, April 24, 2013

As of Late

I have started this post about 4 times.....each time ends with me holding down the delete button and going crazy.  I haven't known what to write down.  I haven't wanted to write anything down either.  The last month has been a whirlwind of emotions.  Emotions that I did not even imagine to expect.  After my last Chemotherapy infusion I was teary for about a week.  I was on a high from being finished.  I cried about finally being done, and I cried thinking about all that this last year has brought.  It has been good....and incredibly hard...on me and my little family.  Then after that week was over I felt an enormous let down.  Like jumping off a bridge let down.  For the last year, every week has been dictated by appointments, more appointments and  feeling like garbage.  I would plan one or two weeks ahead of time.....check those things off of my list and then look forward (just a little bit) to my next planned treatment.  Then...all of a sudden, my calender was clear and I didn't need to see any Oncologist, Rad. Oncologist, Surgeon, Psychiatrist, Oncology Nurse, Social Worker or Gastroenterologist for like a whole month!  Yipee-Ky-Yeah you might be saying!   And that is exactly what I said for the first little while.  But to my dismay, almost a year of high stress took its toll on my body and mind.  My coping mechanism of choice has been humor (and denial mixed with a little sewing and chocolate)...and they just don't seem appropriate anymore.  The thoughts "I can't believe what I have been through" and " I have to live the rest of my life like this?" have been consuming and sorrowful.  

I was thinking that I would take a few weeks to heal, get my brain back and have my body in decent shape to do what I needed to do to be a wife and mother.  Well now I am 6 weeks out and still feel like I have quite the waiting game in front of me.  I have half of a brain, am still really tired and do not have a lot of stamina. See picture below:  Taken by Johnson child #4, then  followed by 100 more pictures of weird things around the house and yard. (And I am totally not kidding about that number!) What happens at the Johnson House (while I am sleeping)...stays at the Johnson House.....cause I pretty much am incredibly oblivious!



 I have a lot of neuropathy in my hands and feet and on the outsides of my upper legs(thunder thighs).  In fact, the neuropathy that I experienced during treatment was a cake walk.  I am continually guarded, just in case someone (one of my kids) might touch my legs.  My arms and hands feel sore and are constantly tingly will fall dead asleep without warning.   I have been put on more medication, hoping that it will lessen my pain.  This weekend we did some oh-so-needed yard work that just about put me in the grave.  I was more sore and miserable.  My left over pain meds were my only saving grace.  

In the last two weeks, I again have become sick and tired of Drs. and the hospital.  I have seen an OB-GYN for some help with some hormone replacement therapy, because all of the radiation and chemotherapy have put me into menopause.  I have morphed into a total beast and have become the hotflash/nightsweat queen.  Everyone that resides at our address is praying that I will level out, and am happy to report that the last few days I have seen some improvement.   I was obedient and had a mammogram, and CT scan.  We are waiting to hear results from my Dr.'s, although we are feeling positive that everything will be O.K.  We also passed the bittersweet year mark of my diagnosis, without a lot of fanfare.  Jeff worked late and I spent the night at the Pinewood Derby.  Next week I will have the dreaded Colonoscopy followed by more Dr. appointments.  This cancer circus is continuing to keep us on our toes even though I am technically finished with treatment.  


But as for now....I am resting, and resting.....and doing laundry, meals, dishes, eating chocolate, not getting on the scale, trying to keep up with my children, (and trying to not let them drive me crazy) and feeling good about not being nauseous.    One thing that I am totally missing is hanging out with this lady! 
And YES in this picture I feel just about as bad as I look! ;)

During my Chemotherapy treatments (all 12 of them) my angel Mother sacrificed everything that was on her plate and traveled to Boise to help juggle our schedule.  She was a maid, cook, nanny, chauffeur, sewing/project partner, party planner, and shoulder to cry on.   I don't know if I would have made it without her, and am so blessed to call her mine.  (How about you come back when I am feeling good!!???)

Wednesday, March 13, 2013

Last chemo

Monday was her last chemo and we are so glad it's over. Today she got disconnected from the pump and is be free from it.   She will have the port in her chest for who knows how long... but at least no chemo is going into it. She has been sick and slept most of the day today. I am so excited for JaNae to start feeling better. She is excited to feel better too but right now she can't keep her eyelids open.

We went in on Monday morning and I got us each a Chic-Fil-A chicken biscuit.  If you have never had one, I exhort you to give it a try.  They are most excellent.  She saw her oncologist and started the chemo. After I tucked her in, I had to go to work for a little while.  When I went outside, it was sprinkling and the smell of rain was wonderful.  The smell of rain is one of my favorite things and I took it as a good sign.  I will tell you that rain smells better in South East Arizona than it does in Idaho but it's pretty awesome in Idaho too.  When you were raised in the desert like I was, the smell of rain takes a special place in your heart and is a symbol of hope and life.  Many of you will not understand this...  but that smell is very powerful for me.

After I got back to the cancer center, I had to use the restroom and my mind was racing thinking of all of the things I had to do... but I made a pit stop at the restroom and was standing at the urinal when the door opened and I turned to see a woman walk into the bathroom... My mind must have been really off because my first thought was "Crap, I'm in the ladies room..." and I was about to apologize when I realized I was standing at a urinal!  The woman rushed out without saying anything and I was very relieved that it was not me that went into the wrong bathroom.  I feel like I walk around on autopilot sometimes.

Here are a few photos to share.  I'm hoping JaNae will feel well enough to post soon...  hint   hint
-Jeff

Add caption






Tuesday, February 26, 2013

# Eleven

The 11th chemotherapy infusion has come and gone.  I can't believe it but I welcome it.  This past year has come and gone so fast, but yet has been the slowest and most miserable year to date.  Crazy!  I cannot believe that I only have ONE MORE left.  It makes me so happy!!!!  But so emotional, thinking about how long this journey has been for me and my family.  As I was sitting ready for the hook up I felt so thankful and appreciative to friends, family and caregivers that truly have made this whole experience livable.  I really am going to especially miss my Chemo Nurses.  They are angels who feel like family!  
The infusion went well...I slept like a rock and upon waking I forgot where I was....multiple times.  The nausea and "calm yourself...we are only giving you poison" drugs have really made me feel intoxicated.   Jeff was afraid I would  fall on the way out to the car...it was that good.  
We came home a few minutes before the children arrived home from school and enjoyed their company (debatable) and then my angel Aunt and Uncle who live in town brought me my very favorite meal!
 Chicken Pot Pie. 
 It was delish and we love and appreciate ALL that they have done to support and love us. 
 We Love Them and are so lucky that they live close.


The rest of the evening I spent gorked on the couch with no recollection of anything that transpired.  I just remembered when the house became quiet.  (Not a bad way to spend the evening if I do say so myself.) :)
And here is to the rest of the week.  My mom is coming this afternoon and in the time being, I am catching up on laundry and ironing.  So. Much. Fun.  

The highlight of our weekend was creating this masterpiece Sunday afternoon.  There may or may not have been (but probably was) mutiny on-board during the creation....but we made it through.  Walker did a great job putting it all together.  However there may be a few parts where you might think that it is an old Japanese Film where the words don't line up with the sound from the mouths.   It is a treasure!   

video

Love to you All!

Saturday, February 23, 2013

The saddest thing I ever did see...



The saddest thing I ever did see

Was a woodpecker peckin' at a plastic tree. 

He looks at me, and "Friend", says he, 

"Things ain't as sweet as they used to be!"

-Shel Silverstein




Notice how healthy this plastic tree looks.


I have taken a lot of flack after killing my third bonsai tree.  I guess I just have not been able to give them the care they need.  My kids have teased me.  My daughter made me a bet that it would die and she won.  The kids love to remind me of how many I have killed,  but he final insult came this past week when JaNae gave me a plastic tree for my office.  I have sunk to a new low... and plastic does not provide the feng shui and zen that a real tree can provide.  Maybe once all of this cancer stuff is behind us I'll try again, but for now my office contains a dead bonsai... and a plastic one. 
Hope you are all well and happy.


This one... not so healthy...
-Jeff



Sunday, February 17, 2013

Curious to know a favorite chant I learned from my Mother that I share with my children when they are whining and inflicting me with their lack of pain tolerance?  

"Oh my Finger, Oh my Thumb, Oh my Belly, Oh my Bum."

Well, what goes around comes around...and I can honestly say with my lack of pain tolerance and empathy that my whole body aches.  Even though I felt relatively well after my infusion, the last few days, I have been a miserable mess.  My 36 year old body has jumped into a 90 year old's.  I think it is all due to that stupid white blood cell stimulator, Neulasta!   I have had a hard time sleeping at night and resting during the day.  My brain won't shut off.  I have hot flashes like they are going out of style. In addition to my body aches..my head and jaw aches and my mouth is sore.  Not to mention my pitiful bowels. 
 (Tired of my belly aching yet?)
It is crazy what all of these cancer fighting drugs are doing to this body.  I have been emotional thinking that I have to endure this 2 more times....and then get emotional that I am this far...and thankful that I only have another month to feel like garbage.  

(Stepping down from my Negative Nancy Soap Box)  

I can't believe that Valentines has come and gone.  I did not take a single picture, which makes me sad!  The children enjoyed their day at school and ate their weight in chocolate. (And so did I...Carmel and Chocolate really cover up the Oxalyplatin taste in my mouth!)
This week, my parents came for my infusion and then my dad left my mom here for the week!    We thoroughly enjoyed each others company.  We did a little shopping..(I love you Tai Pan and Dillards shoe department. ) And some fun projects for Christmas of 2013.  I treasure the time that we have been able to spend together.  I feel so close to her and I am truly blessed to have her as my Mother!  When my Dad came back to pick her up, he and Jeff got their gun fixes spending 3/4 of their day browsing gun stores and shows.  I am happy that they have so much in common.  Luckily they just looked and did not purchase....I spent a wad on some new shoes. (I won't mention how many new pairs are now adorning my closet.)

We were also spoiled once again by our ward with yummy meals and we had 2 Young Men bring me the Sacrament this afternoon, as I stayed home from church.   Once again, we feel so blessed with the support that surrounds us!  We have amazing friends! Today we have just relaxed and enjoyed being together.  It will be fun to have the kids home from school tomorrow as we observe President's Day! 

  And for your viewing pleasure......
Favorite Inappropriate Quotes of the Week, courtesy of my darlings.

Mom, no offense, but you look like crap!
---Walker

Mom, I love you even though you have Cancer.
---Wes

Dad!  I think I am having a Hot Flash!  (As he threw his hoodie across the room!)
---Wes

Primary Chorister..."Tell me something that you feel blessed to hear?"
"Farts...I like the sound of farts, but not the smell of them"
---Wyatt
(We need to work on some decorum!)

Tuesday, February 12, 2013

10th dose of Chemo

JaNae had her 10th treatment yesterday.  She came home from the cancer center feeling quite drugged up and sleepy.  She slept pretty well last night which was a change because she has been really having a hard time staying asleep.  Personally, I think it's the steroids causing her to have long nights...  JaNae has never had a hard time sleeping before this.  In fact, she has fallen asleep in movies at the theater before and usually falls asleep whenever we watch a video.  For the past few weeks however, she wakes up around 2am and reads a book or stalks facebook/blogs until about 4am.  Then she is groggy all day. Don't worry, I'm keeping an eye on her.  

She is doing well over all.  Her white blood cell count is still quite low.  When she goes in tomorrow to get her pump disconnected, she is going to get an injection of Neulasta which is a long acting granulocyte stimulating factor to increase her white blood cell count so her immune system can work properly.  I have heard that this injection costs several thousand dollars for one injection.  They told us the main side effect is bone pain because it works in the bone marrow.  Hopefully it's not too bad. 

Today, has been an anomaly, she has not felt terribly ill.  She has been up and actually went shopping which she has never done the day after chemo... it makes me wonder if she actually got the chemo.  We are not complaining about the way she feels, in fact we are really hoping she feels this well tomorrow and the rest of the week.  It's just so strange how unpredictable things are.  In fact tonight I think I feel more tired than she does... I think I'll go to bed. 
-Jeff



I could not resist this picture...  

Wednesday, January 30, 2013

During chemo...

I have been wondering whether to post these photo's of what it is really like for her to get chemo... We have all of these posts of us being strong and looking happy but really that's only part of the roller coaster ride.

When I came home tonight and saw JaNae on the couch looking green with her "chemo look."  I decided to post them. I needed to share. The photos are candid.  I took them while acting like I was looking something up on my phone.  I did ask her if i could post them and she agreed (though a little loopy at the time.)  I just hope that as you share our journey with us that you know how thankful we are for all of the love and support. We do see the light at the end of the tunnel.

As I type this, she is here in  bed next to me breathing so softly... I can tell by her breathing that she is asleep but it is a light sleep and she is restless. The chemo makes her cold so she is wearing a jacket in bed and has an electric heater pointed at her.  In a day or two she'll be having hot flashes and throwing off the covers.  It really is a roller coaster ride.  I don't know how else to describe it.
-Jeff


The nurse had just pushed some of the medicine that gives her a bad taste and smell that makes her  feel so sick.



This is a close up... and yes those are tears.  It breaks my heart to see her suffer .


This is the miserable chemo face she gets.



Once the medication hits, she gets very sleepy and takes a little nap.
 There was a robin that was outside the window that kept hopping down and looking in at us. 

PS.  Just to update on her health, her white blood cell count was low and her ANC (Absolute Neutrophil Count) was 1.44.  Which means she is at increased risk of getting any type if infection so she has to be careful.   The doctors will consider giving her a dose of a GSF to increase her blood cell count if it continues to be low.

Monday, January 28, 2013

Number 9


Here we are partaking of round #9!  The light at the end of the tunnel (or should I say empty toilet paper roll) is increasingly becoming closer and more focused.  I am truly so ready to be done. The endurance part of this journey is wearing me out and taking it's tole.  But I am invested.....and wanting to finish strong.  I am feeling a little drugged and loopy, so in other words....readers beware.  When I read this tomorrow , I am sure it will be like I am reading it for the first time.  What a pleasant surprise.....I could get used to this granny amnesia.  I think it  follows this granny cancer disease quite nicely.  

As you can tell my view from the comfort of my chemotherapy suite bed.....is amazing.  Hubby doing work as he sits with me....supporting and keeping me company.  I love him!  And am so thankful for his constant support and love.  I would have not survived these last 9 months without his help. (And neither would my new found friend...the psychiatrist )  With out his help, she would have had more work than is humanly possible!)  HaHa  He is a compassionate and wonderful Husband and Father....I am lucky.  My angel mother is coming later this week to help out.  Don't know what I would do with out her help as well.



Description of above said photo:
1:  Warm blankets
2:  Another adorable baby quilt being bound for someone special..
3:  IPad close so I can keep up with my email box and police Jeff on what he posts onFfacebook....  And speaking of Facebook and stalking...I have had a lot of friends go on exotic, warm vacations this month. (Dirty Jerks!)  ....needless to say, I am living it up through their great photos!  Keep them coming! :)
4:  Handy Chemo bag with everything from gum, lotion, cinnamon lip gloss, extra feel good drugs, a good book hand,  sanitize, scissors, thread and another quilt, just in case I am fast with my work.
5:  Jeff:  Mr Worker mouse, trying to juggle everything on his plate as well as my appointments and insanity.
6:  Chic-fil-A breakfast sandwich and cold drink.  Anyone curious at why I have not lost weight on Chemotherapy?  There is the evidence!  I slurped that cold caffeinated soda it like it was going to be taken from the face of the earth.  As soon as the Oxalyplatin is running through my veins, my cold drinks are toast!


Jeff snagged this photo...i was OUT.....and quite a few more times throughout today!
God Bless America and Good Sleepy Drugs!  


My  nutritional nightmare, white trash comfort food lunch.  Milk (1% because I think that I am fat.....I really could have whole if I wanted--Napoleon Dynamite!) Cream of wheat, cold English muffins, a little honey, and for old times sake LUCKY CHARMS (Did I ever tell you that I lived of those things during radiation?)....because we need all the luck we can get!  Oh and some room temperature Diet Pepsi's and and Andes Mint just because the lunch ladies are nice! 

Treatment today took about 8 hours....we did not leave the hospital until around 3.  We love the nurses, and they are so attentive, loving and good.  But today seemed to drag and we did a lot of waiting.
Jeff and I conversed with one of my favorite nurses and another patient about our journeys and how fast life flies by. This patient just had his last child get married, and now he and his wife are empty-nesters.  He mentioned quite a few times that he wished he and his wife would have more children to fill their home.   Our conversation tugged and my heart.  I am so thankful for who we are able to share our lives with.  Friends, loved ones and especially our sweet children that make our house a home. It was a hard conversation to listen to.   I don't want the good days of life to zoom by...(maybe just the hard ones!)   And I cant have my 4 grow and leave to quickly.  We'll just keep taking and enjoying one day at a time!

Love and Blessings to you all this week!  :)  ---JaNae

Sunday, January 27, 2013

Still going strong...

We haven't posted for a while mostly because things have been uneventful. JaNae is still going strong and amazes me.  She does feel like garbage quite a bit but carries on with life and doing the things that need to be done.  Last night she did not sleep well  so she was up at 4am quilting and baking muffins for breakfast.  I've been sneakily trying to psychoanalyze her and figure her out.  I'm not very stealthy at it though because she always knows what I am doing.  I swear she can read my thoughts. I know there is quite a bit of anticipatory anxiety before chemo and I feel it myself as I watch her suffer... in fact I sometimes think the mental turmoil that goes along with the diagnosis and treatment of cancer is every bit as bad as the physical battle.  I hope I'm giving her the support and strength she needs.

People ask us all the time what they can do to help and I honestly am not sure what to say... our needs are met and we are living our lives and  making it one day at a time.  We appreciate everyone that has brought in meals, offered prayers, dropped gifts  on our doorstep, or dropped by to check on us.  We are so thankful to have so many friends and people who care so much...  Thank to all who have been blessings in the lives of the Johnsons.

---Jeff

(PS.  JaNae, I can't believe you snuck a post in right before this one!  You must have read my thoughts... again!)


JaNae here...


If this blog had sound effects....we would all be hearing crickets.  I regret being such a slacker...This blog is reminding me of swiss cheese with lots of holes!  Here's to filling a few of them in. 

I cannot believe how fast January has flown by.  We have had good and bad days, although hopefully the good ones are tipping the scale.  I have had a few days where I have felt good enough to do some spring cleaning and organizing.  (To the horror of my children.)  It feels so good to have energy to do normal things, and feel like I have control over the household.  #7 and #8 chemo infusions are under my belt (or fanny pack if you prefer)  and am gearing up for #9 bright and early in the morning.  I am not excited, but as I type Downton Abby is numbing the drudgery!   The last few days I have been able to taste the chemo and feel sick, on demand.    Bleh.  I wish I had super powers to smash that anticipatory nausea out of my brain.  The nausea I feel on treatment week is plenty!

I am  curious to know if my hair will thin again like it did after my 3rd infusion.   My hair is thick and I have been very pleased that it is still hanging around.  I have noticed a little regrowth around my hair line. It is an inch long and sticks up!  And my deformed fingernails have grown out....I just trimmed off the last bumpy, thin and brittle fingernails that were effected by the chemo.  We'll see what the next few rounds bring. 

This past week, I had an appointment with my surgeon for a check-up....and when I say check up....that is exactly what I mean.  (Shudder.)  I didn't sleep the night before, and at the visit my BP was just about heart attack high.  But the visit and exam when quickly and well.....then I skipped out his office with normal blood pressure and a 50 pound weight off my back.  I don't have to go see him for months.  (Insert hallelujah choir here)

I also had the "pleasure" of seeing my psychiatrist.  I am choking down a big black crow, as I feel that the time I spend with her are positive and helpful, even though my attitude toward her has not always been amazing.  She is uplifting and writes me prescriptions for good drugs.....a win-win in my playbook!

And when it comes to drugs....this lady is going to ingest her share momentarily.   I am really exhausted, but have a hard time turning my brain off in order to get to sleep and stay there.  I bet you can imagine my game plan!  :)