Update for July 16

We did finally get Dustin's lab results by his Dr's office, all they were going to tell me was his potassium was low and double his potassium for 3 days.  Before she hung up I was yelling wait what was his BUN, creatinine, and GFR, oh they' re ok, she says and hangs up.  I'm a nurse I've been in her position over 100 times, it's after 5:00, the Dr did not write any thing else so therefore it is all is good.   But me, the neurotic, crazy patients wife on the other end of the phone wants to jump through the phone drop kick you, ring your neck and look at the labs my self ( all the while hearing my mothers voice in my head to hide my crazy and act like a lady)!!!  Well I knew they should be on the computer any minute and Dust and I could check them out ourselves.  We waited all night and until noon the next day, I finally called our favorvorite receptionists and told her our problem, after an hour our labs were on the computer and we were not happy.  His BUN was lower, creatinine was higher and his GFR was lower.  Of course not what we were told!

Dust is now sleeping 20 hours a day eating when I remind him.  My 93 year old grandmother made him some potato soup which he loves, no one else allowed to touch it!

His next blood work is next Friday and we go to Tulsa on the 25th.

My seizures are getting shorter but still about the same.  Any one know of a trailer a 1/2 ton could pull we could borrow for a 2 weeks to a month so we could go to Colororado, let me know.  Promise to take very good care of it :-) pretty sad when ur 42 and feel like your 92 and to know there is something that will make you feel better (proven by studies) bu since you I've 18 you can't have!!! It really make me angry not for just me but also Dustin he has lost so much weight this would take his nausea away, right now that is 75% of his problem.  For that people that are against it come to my house for a day! Sorry I'll get off my soap box.

We have found that Bean does not leave my side during a seizure, I knew he was with me during the complex partial seizures (I'm aware during those but cannot comunicate). We have now noticed he is warning me, he lick my arm and if I do not respond to him he starts licking my face ( he knows I don't like that).  My own service dog.. Lol

Spell check will not work , sorry!!      

Love

Delana

Update July 13

Dust and I went to the Dr, we see the same one just different reasons.  He's a Hematologist/Oncologist so he gets to figure out why I have blood clots and he takes care of Dustins  cancer issues.  My visit was you're doing great but why r y having seizures? If I had that answer we would all bee happy, so I got the speech about hitting my head then we moved on to the real problem in the room.  Of course his labs weren't back from when we had them drawn (and I hand an seizure poor pholbotomist it think I scared her to death and it was a small one).  Anyway the Dr just told Dust to rest and they were going to make him an appt with nephrologology.  So we just sit and wait and  San neither of us do that very well.

Dustin just pointed out to me his CML is not on Beanfords World.  Long story short, I was I the hospital and he just kept loosing weight.  When Dr S.  Came in I talked to him and he asked him to come in that day for some tests.  He did normal chest X-ray and blood work and the next morning cane in my room with Dustin there to tell us to get to Tulsa it looked like he had leukemia .  Honestly it just all becomes a blur after a while.  We would have stayed in Tulsa but his Dr was moving back to Nebraska to be closer to family.  But he said his CML shouldn't be any problem and if we wanted to have my hematologist follow him it should be just fine.  Well it's not fine any longer.

I apologize for this if it is hard to read I've had 2 seizures today and having a hard time waking up.

Also, I really would like everyone's opinion on this, u can pm me if u want. I'm on a lot of seizure meds, so I called my nurse and asked about Cannibus oil, she said I was under 18 she could get me oil, smoke, baked goods or whatever I wanted and it actually worked!!!! But since I was over 18 keep up with the meds or move or find a trustworthy person who will sell me some !!!!! My jaw was on the floor!!!!

Love
Delana

Update 2016

So we decided to start up Beanfords World again, it just makes it easier to keep every one upto date on what's going on and if you want to read it you can if not you don't have to 😊.  First of all we have Bean a brown brindle chiauhaua and Tiny Baby a 4 lb black brindle Chihuahua, so it's really not just Beanfords (like using his middle name) world it's Bean and Baby's, Baby is Dust ins baby believe it or not, but my mother would take her in a heart beat she just loves dogs!!! (Making sure ur paying attention).
Dustin is still very nauseous and not eating much, his next appt in Ft Smith this Wed, we are anxious to see what his number are, he feels he is getting worse and they are not doing anything for him.  We do have an appointment in Tulsa the 25 with his old onc office, we only left because his Dr left the office.

As you know I went to see my neurologist last week, well the medication he gave me is kicking my but, but not necessarily kicking the seizures just yet.  So just yesterday I went on the max dose.  I've only had 2 seizures today but it has taken me 2 hours to write this!!  Oh well.

We still ask for all the prayers!
Delana