Saturday, May 30, 2009

Cardiology, Add Another Doc

Over the past two weeks or so Alex has had some new stuff going on. It started with what I guess are anxiety attacks. She had feeling of doom and gloom, felt like her heart was racing, tightness in her chest and she was pretty emotionally unstable. I took her in to the pediatrician who rx'd Xanax; it has worked pretty well. She says it helps her to calm down anyway, and not worry so much.

Aside from the tightness in her chest she has also been having severe stabbing type pains a couple times daily. We were assuming it was heartburn; she has reflux a lot and is taking Nexium twice a day, but this was different. We talked to her GI Doc on the phone and she said to try Tagamet; it has helped some...maybe. We managed to actually get in to see the GI doc and she prescribed Carafate; thinking possible duodenal ulcer. She said if it didn't work we needed to get Alex a cardiac consult.

I called back yesterday and told the doctor the Carafate didn't seem to help and it was causing severe diarrhea. So, now they are arranging a cardiac consult. They want to get her an EKG and echocardiagram to make sure her heart isn't the problem. Alex originally told me she thought she was having a heart attack. I'd like to bury my head in the sand now, but this needs to be taken off the table before she undergoes surgery. Anyone see the House episode with the young girl with Cushing's? She presented with a heart attack.

Monday, May 18, 2009

The Never Ending Low

The last couple weeks have been so weird. Alex has been in such an extreme low it's unbelievable. She has lost 10 pounds, she has no appetite, the acne is gone, and other symptoms are going as well, but she feels AWFUL. This is what I expect after the BLA, not before. She has been taking whopping doses of hydro ( 5mg at a time, but up to 30 or 35mg in a day) just to keep from vomiting and shaking. Along with feeling physically awful she seems to be in a really major depression. I just don't know what to think. I'm theorizing that her pituitary has completely quit making ACTH on it's own, it's gone to sleep as the tumor has taken over it's job. The problem with that is that when the tumor cycles off her pituitary isn't "waking back up" to fill in the gap anymore. After the BLA she is supposed to live on 25mg. of hydro a day, so I really don't get why she needs more than that now. Hopefully things cycle again soon and change. this isn't a fun place to be.

Sunday, May 3, 2009

What's In A Name?

Cancer.I've thought about this a lot lately. Our last two visits to doctors were both to see surgeons who primarily treat cancer patients. Their offices were filled with a collection of bald-headed chemo patients and those wearing masks to prevent infection. It is truly heartbreaking. While Alex and I were saddened to see this it also opened her eyes. "I'm really sick, aren't I?" It's funny; you tell someone Cushing's Disease, and you might as well have said you have a headache. You tell them cancer and the world changes. I'm not diminishing cancer by any means, but it would be nice to have a "label" that would help people understand the seriousness of this disease. My mom had cancer, my dad had cancer, even Brian had skin cancer, but they got a diagnosis, got treatment and were able to go on with life.

I don't think it's completely accurate but some text books state that the survival rate for Cushing's is 50% at 5 years if untreated. Add to that that the typical patient doesn't get properly diagnosed for 7 years. Nice discrepancy, huh? I'm sure it sounds dramatic but some days I'm really scared we won't make it to the finish line. Surgery doesn't scare me, the disease does.

Friday, May 1, 2009

A Surgery Date, Finally!

I said I would be happy if they would just call and tell me the date. I lied. I'm still not happy. ELEVEN weeks from now, July 16th. There is no way to get in sooner. Dr. Duh wants it scheduled at the Children's Hospital at UCSF; he usually does surgeries at the UCSF Cancer Center across town. He did tell us he would want to do it there because he would be able to put her in the pediatric ICU, where he feels she will get better care. I just wasn't getting the fact that he only has certain, limited, days available to him at that facility.

School starts mid August and I was really hoping she would be able to start the new school year partially recovered. I have heard so many different things when it comes to recovery that I have no idea what to expect. The surgical recovery shouldn't be bad. It's the recovery from Cushing's and trying to get the meds right that can take months, or years. It seems that those who have had Cushing's the longest and are in the "worst" condition are the ones who take the longest to recover. That doesn't give me much hope for a speedy recovery. I think Alex has probably had it since birth and her condition couldn't get much worse.