Kirsten Is Sick – August 20, 2012

History

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I’m home now. Kirsten will have an MRI sometime tonight to get a good picture of her liver before the biopsy tomorrow. Her pituitary tumour might be producing the ACTH. The test they gave her to suppress it, didn’t. They can’t rule out the tumor because of that, because it’s a more aggressive tumor than normal. However, it’s not as large as it was after her craniotomy.

Obviously, the spots (lesions) on her liver are a concern. They could be malignant (cancer) or benign, and may or may not be producing ACTH. If the biopsy is negative, the endocrinologist I spoke with tonight will recommend a PET scan to have a look at functioning tissues, hoping to discover problem areas.

Then there are the adrenal glands.

Kirsten is frustrated, scared, and confused. The team at the hospital are managing her body while they search for answers. This is serious. It will not be solved soon, and none of the discussions are positive.

The girls are now eating the dinner provided by Adam. I could not be more thankful for him.

Honestly, I’m nearly to my limit. I don’t know how else to put it. I have to be strong, because the girls need me. Kirsten needs me. This stuff can’t be outsourced. The support and offers of help and kind words mean more than you could know. The outpouring of love from our network of friends has been extraordinary and deeply touching. I feel like you buoy me up, and allow me to press on. Thank you.

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The Danlers

Vegan Macaroni and Cheese
My dear friend Adam Burk brought us a tonne of delicious-smelling vegan macaroni and cheese that I am very much looking forward to devouring at my earliest opportunity. Thank you, Adam. :)

Kate stopped by once again for a visit. We enjoy her smile, hugs, and positive, happy demeanor. She brought Kirsten a pack of snack-size Mounds candy bars that Kirsten can eat between meals without needing to adjust insulin.

Friends continue to express concern and support and offer help. We appreciate you all very much.

Due to lack of availability, the ultrasound and biopsy have been postponed to tomorrow. Any moment now she will be taken down for an MRI of her liver and adrenal glands. So, another day without answers. She didn’t eat anything until nearly 1400 because they couldn’t decide the imaging technique they would use for the biopsy. So, at ~80 pounds, she will have only two meals today. I’m not impressed.

When people defend the US sickness industry they often disparage more socialistic systems by saying that they require patients to wait for services. The assumption is that we don’t endure such problems here. That is pure poppycock. Our cost are higher, and results worse. I shift from worry to anger to gratitude many times throughout the day. It’s exhausting.

I brought the girls up to visit, which has been nice. Now we’re headed back to Saco to enjoy some of that mac-n-cheese.

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Kirsten is so tiny!
A team of doctors were just in the room (she has been moved to R1, 111A) to talk to us about the next test. Kirsten will undergo an interventional radiology (IR) biopsy of her liver lesions so they can determine if they are malignant or benign and what, if any, hormones they are secreting. Kirsten hasn’t eaten because they don’t know what imaging technology they will use to guide the needle. If CT scan, no food; if ultrasound, she will be able to eat. Until they decide, she is NPO (Nothing By Mouth).

This morning I arrived to my new job at Auto Europe just after 0800. They set up my new 27″ iMac and made sure I was connected to the internet. They guys were were there were very helpful. My new boss was aware of the situation with Kirsten and expressed his concern. I asked him if he would delay my start date so I could care for Kirsten. He was very understanding and thought that would be a good idea. I gave my employment paperwork to human resources, got my parking garage pass, and left. I am so grateful and relieved that my new company cares about their employees and their families, and that I will be able to focus on taking care of Kirsten.

I still haven’t cleaned out my office area at Outside Television. Hopefully I’ll get to that today.

On the way to the hospital I stopped at The Crooked Mile and picked up a bacon, egg, and cheese bagel and a yogurt. Then I stopped in to Bard Coffee for a large dirty chai. Jeremy, the owner, gave me a big hug and wished us the best. I cannot say enough how grateful I am for the many ways in which our friends have reached out with kind words and generosity. We love you all.

People keep asking me if Kirsten is improving. The answer is, simply, no. The doctors know what’s wrong, but do not know the cause. Therefore, they can not recommend any therapy that would lead to improvement. They’re giving her emergency endocrine drugs to stop the slide while they continue to investigate and conference. Until they know more she will not improve. This is extremely complex, with far more questions than answers.

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