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!

10 comments:

  1. BHLLLLEEEEEHHHHH. That's the sound of the inner mountain goat. Let's call him Rafer shall we? By the way...I have a good goat story to tell you. It involves Carter and the fastest he has moved in his entire short legged life. It was priceless.
    Miss you. Hope you are feeling well. Enjoy your pizza...I would kill for a pizza. (But not the hot dog ketchup kind. Cherry pie from a can anyone? I love inside family jokes!)

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  2. Your humor and attitude through all this is such an example. I love reading what you write!! Good luck with radiation. I think about you a lot.

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  3. I love Jeff and Janae Johnson!!!!!!!!!! I miss you guys so much I can't stand it! We pray for you daily and hope that you feel of our love and every good thing! I miss my friend...

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  4. Tattoo Ninja Cancer Warrior, your strength is amazing! I think about you so often and am so happy to hear of all the friends there supporting you. May the prayers of all of us who love you give you a chunk of the weaponry you will need for radiation. Keep on napping!

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  5. Love love love you guys. Dean is constantly trying new tricks on his bike thanks to your boys (don't worry, they're pretty harmless). I'm so glad you're mom has been able to be with you for each infusion. She's pretty awesome, isn't she?

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  6. Janae, I am so impressed at how great you look! Your parents look exactly the same as I remember. I am INSPIRED by your strength. I also used to work at the hospital, and was often over at MSTI. Does Cecil still work in the front lobby and help park cars? I loved working with him. Great guy. When I worked there, all I ever ate was grilled cheese sandwiches. Hard to mess those up. Praying for ya!

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  7. How do you do it? You look amazing and yes, for sure we should call you Part Ninja from now on. I know you have bad days- but you're enduring so well. I'd love to come up and see you sometime in the next couple weeks if you don't mind. I'll give you a call and see if that would work. We have Fall Break and I just miss you all so much. I'd love to come and sit through a treatment with you! I'm proud of you.

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  8. Just wanted you to know that I have been thinking of you! You are amazing!!!

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  9. Cheering you on JaNae! I wish I was one of those girlfriends there with you in that picture - helping and just getting to be with you! They must be pretty great to be with you! and so good to see your folks.

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