Monday, April 24, 2017

I have NEADs.

Quick Update:

Stable, NEAD
Adrenal insufficiency

I have been tired. Exhausted. Fatigued. In a way I have not been familiar with. I go upstairs. I need to rest. I shower. I need to rest. I wake up, I need to rest.

I sit down in the chemo bay and Jacqui looks at me- You are stable-I expected you to be dancing around and happy. - I am too tired. crazy tired. my feets are swollen and my blood sugar is high.

My ankles and feet were a bit swollen when I left the hospital- 2.5 months ago. I was sure it would resolve once I was off steroids. I have been off steroids for 2 weeks. It is not better. It hurts. If I sit - they poof- If i Stand- they Poof. The kids call them WALL-E feet.  Like the movie. I was not amused. We tried rubbing, wrapping, compressing. They bruise when I put my shoes on. - it hurts and I've been watching my blood sugar- it too was supposed to get better after steroids. It has not.

Today was my last appointment with my onc. He is retiring. So It was time for me to pull out the laundry list of concerns that I've waved off as fine for the past couple months.

One look at my feet, he shook his head and ordered a stim test. I know the stim test for adrenal insufficiency because we do them with Lily- it's how we know whether her adrenals are working.

After prolonged time on steroids- the adrenals sometimes go on strike. the stim test is a blood test- they draw blood- inject ACTH to stimulate the adrenals then draw more blood at half an hour and an hour. If the adrenals work- you see a response. If not- you have to supplement with hydrocortisone. We know the drill.

Scan results- Good, good and good. Not NED. NED is No Evidence of disease. BUT we got NEAD- His slightly higher maintenance brother. No Evidence of Active Disease. They noted new post surgical changes in my nugget(but everything else up yonder in my brain is unremarkable). PET scan is not good for brain monitoring. but still we take it and I'll argue later about how remarkable my brain truly is.

The nodules in my lungs are STABLE. this is good. Heart, etc are normal- which I could disagree but for this case normal is good. No swollen lymphnodes-good.

Liver, kidneys, organs- all those bits- good. adrenals- good- this is important for the next problem.  No masses or fluid build up. I have a big spleen. splenomegaly. go ahead say it. I can't.

Bones- STABLE. They still can see the bits that are metastases- but they are not active- we hope to keep them as sleepy as possible. The immunotherapy shot I get every 6 weeks helps keep my bones strong.

Number 1 impression: No evidence of active disease. NEAD. Just what I needed to hear.

So we chat with my onc about metformin(it's a type 2 diabetes drug that is also showing to have some good results in cancer patients) Many mutants were in a study to see if it is cancer preventative(because we are super cancer prone) the prelim was good. It's worth a try. So we are trying it. It will hopefully also help with the pesky blood sugar problem.

I finish up and we head out. My phone is acting funny- it wont let me answer calls. I think it's the higher powers saying go and rest you nut. The hospital number pops up. So I rest and check messages later.

It's  a message from my onc. I have adrenal insufficiency. I have to start hydrocortisone. No worries- we have bottles of the stuff in the house until we can get back to Tripler- which will be soon since I have a new referral to adult endocrinology. I wonder if the kids endo might see me. While I am on the phone getting details- Phil gets a call that they cannot do my referral to endocrinology since the system says we have not been in the system since 2011. Which is fricking HIlarious. We sooooo have been all up in the system since 2011. I mean really- I'm there every 3 weeks. I just had brain surgery and a PET scan. Those are not cheap endeavors. Good times. So Phil spent the rest of his day off trying to fix that to no avail.

I spent the afternoon resting and covering the craniotomy scar of my newest Buddha. Lil Phillip brought him home last night. He's learned that Ross is a good place to spend his work breaks. He's been buying clothes and the occasional gift. It's sweet. So the Buddha had a cracked head- but he presents him to me and says it's hardly noticeable and I got a great deal. That kid. It was just what I needed.

1 comment:

  1. Too much. Too funny. Love always looking on the bright side of life...what a deal with a sympathetic Buddha. Love, love, love you all. See you soon. Mom Deb


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)