Sunday, August 10, 2014

Things are going well here at home.  I feel almost back to normal.  A little nauseous and weak, but that's about it.  I guess it will take a couple months for my blood counts to return to normal, so I'm to be a little cautious of communicable disease and infection.  I'm on a daily antiviral, antibiotic, and antifungal just in case.  

I love that my kid's friends will just come out and asked if 'it' worked.  Wouldn't we all like to know!  I will find out in September (sometime around the 4th, we don't have a date for the scan yet).  It either kind of works immediately or it doesn't work at all.  I do have a disadvantage with the number of cells they were able to grow.  They try to get 50-150 billion cells.  They were only able to grow 13 billion for me, as some of the cell lines started dying off while they were expanding them.  As long as the cells that kept growing are the ones that can kill the cancer, this could still work.  If I had 100 billion more cells I would have a greater chance at getting just the right killer cells.  I haven't dared look at the articles I've read in the past about predicting a response, but I don't remember anyone with low cell numbers responding.  That is not to say it can't happen.  Jesus fed 5,000 with 5 loaves of bread and 2 small fish.  I think I've been reading too many medical journals and not enough Bible.  

There is that horrible fever I got right after they put my cells back in me.  That is the one thing that gives me hope.  And the fact that I have responded in some way to everything so far, so why not this?

We had Jess Curren of Picture Me Mine Photography take some photos before I went to Seattle.  Ginger is always the star.

I am pretty fond of the white stripes in my hair.  In my bald head they look like while splotches of skin, so the stripes will be back.

Growing up way too fast.
I loved having hair.  Hair is the best.

Tuesday, August 5, 2014

Josh and I are so very grateful to be home.  How lovely to sit on the porch and watch the golden sun go down and to smell the garden after the rain and put my robe on and tuck my kids in bed and snuggle with my dog and open the windows to hear the crickets chirp.  

"Happy to be here" to a new level.

Again I feel the rushing feelings of gratitude invading my every thought.  I will sleep on those thoughts and expect very sweet dreams indeed.  

Monday, August 4, 2014

We are all set to be home Tuesday evening.  I took a turn for the better when my old roommates came for a visit yesterday.  Good for the soul.  My blood work is rebounding nicely and I am feeling okay.  Thanks again for all the love.

Saturday, August 2, 2014

I wanted to give a quick update.  I am still feeling the effects of the chemo, mainly nausea, which is proving resistant to all my efforts.  What energy I have I use going to the hospital twice a day (a total of 4 hours) for an antibiotic infusion.  One of my blood cultures in the hospital came back positive for bacteria, so they left my PICC line in and we have to finish out this course of Vancomycin.  My last dose will be Monday night and then there is a possibility of heading home if everything else looks good.  I am so planning on that.  Being away from my kids is getting harder.  Sometimes it is all overwhelming.  Thank you for all your prayers and kindness, at least I have that.

Thursday, July 31, 2014

No worries

Discharged from the hospital and on the mend.  The first people to see me bald (outside of the bone marrow transplant unit) also saw me smiling.  Fresh air!

Wednesday, July 30, 2014

bad hair day

Yesterday was a rock bottom kind of day.  It seemed to be the peak of the chemotherapy and the IL-2 effects.  Fevers continued.  Fluid everywhere.  Mouth raw and esophagus burning.  Nausea.  Diarrhea. Itchy, red, irritated skin.  No sleep for days.  Feeling sick for almost weeks.  And then the hair started coming out by the handfuls.

That was when the girl on the floor who gets things done put me in a chair and got that pesky hair out of the way.  It was so all of the sudden.

We got video, but let's just say it's not one of those beautiful, triumphant moments of warrior preparing for battle.  I am like semi conscious and about to barf.  We can't get things from my camera onto my computer right now (seriously? haha) but trust me when I say it was just ugly. 

I think it's fitting that my gown didn't even have middle snaps on the sleeves that day.  Ultimate bad day.

They gave me a unit a blood at night and that did seem to pick me up a great deal.  I said a prayer for the person who donated that blood, it must have come from a very warm heart.  God bless.

Josh took me getting better as an opportunity to get the hair job done right.

Uneven, Josh could never live with this.

Of course the mohawk first

I think I make a cute 17 year old boy.

Josh keeps smiling at me and saying he thinks he's looking at a movie star.  I'm telling you there is no better husband.

I haven't really been sad about the hair yet.  I am not looking forward to having the lyphedema sleeves and the bald head-there's a lot to stare at there.  But you aren't bald for long.

I had a "Toast to Good Hair and Good Friends" party the night before I left.  So I got to say goodbye all those years of long hair with some of my best friends.  My sister did my hair and I think it turned out perfect.  I would love to show you pictures, but you know me and my technical difficulties.  :)

Well Jennie got a shot of the night, and look at that battery power!

Tuesday, July 29, 2014

day 6

I had no idea there were this many miseries.  I told Josh never ever to let me take the hard route again.  How can I back out now?