PUMPKIN CARVING PARTY

I haven't done much for Halloween since I have been sick so I decided to do a PUMPKIN CARVING PARTY with Callie and a few of her friends since I am feeling better.  We carved pumpkins, ate pizza, played outside, painted nails (Cole is such a trooper) and ate “pumpkin” cupcakes.  I gave out awards for the most unique and creative pumpkins (everyone got something) and fun BIOHAZARD gift bags.  It was a lot of work but a lot of fun. 

Numbers are still good. Last week we took 300ml of blood and liver is much happier.  This week I am sure will take more until the numbers are where they need to be.  Went to the dermatologist today and had moles removed that have been bothering me.  You’d think I’d be used to needles…OUCH…not so much.  Life is good and I am happy!

LIVER LIVER LIVER

This is week has been all about my liver, what it does, why we need it and how the numbers affect my health.  After seeing Dr. Nielson and he also being concerned about my high levels he wanted to ultrasound the liver to see if all the right blood flow was going into it. (Basically check if all the vessels were working and bringing blood to the liver.) I got a call at 10:30 am that they wanted me that afternoon but no appointments until 4:30pm.  Oh, did I mention no eating or drinking the whole day. AUGH.  By the time I got registered, did the ultrasound and finished it was 6:00pm.  I was dizzy, hungry and tired. The technician was impressed with my liver and said all looked good to her.   We got me something to eat and headed to McCall’s soccer game. Half way through the game I start to get dizzy.  I think the lack of food, heat and long day put me over the edge.  Jeff got me to the car with some small “black outs”…but nothing serious.  Home right to bed….felt much better the next day.

The following day the doctors wanted an MRI of the liver.  I was luckily able to eat. HA!  This checks the amount of iron in your liver and how it looks in 3D.  Got registered again and in through the “donut” machine (as I like to call it).  I am not claustrophobic so this does not bother me.  Takes about 30 minutes of loud noises on a cold bed.  No big deal. 

 A call later from the doctor that the liver looked good but now they needed a full liver biopsy.  (I hate that word ….biopsy…yuck).  No eating or drinking for this either but my appointment was at 7:30am the next day.

More registering and paper work.  I met with the RN got my needles put in and they hooked me up like a car.  I had a zillions wires hooked up to me to keep checks on all my vitals.  Once in the operation room I got the “good drugs”. These don’t really knock you out…but make you super sleepy and feel wonderful. HA!  They put a small needle through the right side of my neck down the main artery and took a few samples of the liver.  I went back to recovery with a large bandage on my neck.  Finally was free to go home and just took it easy for the day.

With all these tests done the same results are back.  The liver is GVH free (from the donor).  I don’t have any hepatitis C or liver damage.  I just have TOO much iron.  We’ve taken me off some medications and today's number have come down almost 200 points.  We have also decided to take blood from me each week.  Today the RN took 250ml.  Next Friday we’ll recheck the numbers and if my red-blood cells are holding we’ll take 500ml and continue each week until numbers are normal.  Funny how I used to get blood….now I am giving it back. (Even though mine gets thrown out.)

 Another gymnastics meet last week and Callie did great.  

She took 3 place overall!!

McCall-Anna-Rachel-Lester

(all my daughters)

Love you guys!

Got an A-

Happy 19^th Anniversary to my great husband.  We have been together 20 years and been through a lot together.  Thanks for standing by my side, being the best dad and husband I could ask for and loving me as much as you do.  I can’t imagine my life without you.  Here are to 20+ more.  I love you!!

A few weeks ago we celebrated Grandma Rose's birthday.  I realized all the grand-daughters were there and took some photos.  WOW.  We have a lot of girls.

 

Doing more each week and doing things I have put off since I got sick. I am cleaning out drawers, closets, storage room etc.  Trying to decide the color of our bathroom and will work on that next week.  I will get Halloween decoration up next week!  EXCITED!  I have made it to more of McCall’s soccer games and even went to “parent lunch day” for Callie’s school.  It is so nice to get out and “be part of the world” again.

 

Last week clinic was good.  I was asked to meet Dr. Petersen (head of the oncology department and my favorite dr.) in the “conference room” to talk about my 100 day mark and test results. (I hate the conference room.)  We’ve only got bad news there so I jokingly requested we go somewhere else.)  We sat down and I got Jeff on speaker phone. All my numbers are great.  All my white counts, red counts, kidneys and platelet numbers are moving positive and Dr. Petersen is happy with my results.  He did mention that because of my unusual situation and how my cancer presented itself he is writing up my case for the medical journals.  They have never seen a case like mine and don’t know if they ever will.  He was impressed with all that I have been through and that I am still rather healthy and beat the odds.  I was given an A-.

But……and there is always a but.  (Seems like it never ends.) My liver has not happy the last month.  Liver counts are getting too high and Dr. Petersen is getting concerned.  He is now sending me back the Dr. Nielson (who helped me with stomach issues last year) to check and see what we can do to fix it.  It might be a mix of things such as a liver biopsy, GVH, medicine related, drawing out blood each week to clean the red cells etc.  I feel good and hope this is a quick fix.