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) 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 (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 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!

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)

Friday, September 7, 2012


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 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 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 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! 


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.