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.

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 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.


(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!  :)