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Thursday, February 28, 2013

Incompetence

That is the word that springs to mind when thinking about Northwestern Memorial Hospital these days. Complete incompetence and disregard for patients despite their statement that:

Our patients come first in everything that we do. Northwestern Memorial Hospital is committed to providing our patients with innovative, high-quality care in a healing environment.

Apparently this does not extend to the records department. I'm not real confident in how innovative or high-quality the care is at a place that can't even send out records when requested. Despite the fact that I went IN PERSON on February 13 and filled out a form to have my latest MRI cd and report sent to MD Anderson, after waiting on hold today for nearly 20 minutes I was told that my files had not been sent until...this morning. A full 15 days after my request. And 14 days after they told me they would send it out.

When I asked the woman on the line why it had not been sent out she said, "I don't know but I know who took your information and it doesn't surprise me."

Seriously??

So, that pretty much seals my decision. I will not be working with Northwestern Oncology any longer or their incredibly incompetent records department. I will move all of my follow-up care to MDA. This means trips to Houston every 3 months but it will be worth it to avoid the massive amount of anger I have trying to coordinate my care with complete idiots.

Oh, and there is no tracking number on my package as they sent it via USPS regular mail. This means it could be another week before it even hits the desk of my oncologist down in Houston. Nice touch Northwestern Memorial Hospital. Nice touch. I certainly don't feel like I'm coming first. Not one bit.

Monday, February 25, 2013

Len's birthday weekend

We took a long weekend trip to Key Lime Cove with our friends Jackie and Meg, their kids and au pair, Erica. I don't think this is what Len envisioned as a teenager when he saw a long weekend spent with 4 women in a tropical climate....

We spent hours (HOURS) in the water much to Kate's and Lucy's delight. I normally enjoy swimming just as much as the next person but the combination of piped-in heat and not enough hydration left me a dessicated husk by weekend's end. For the most part the weekend was a success but I have to say that sharing a bed with either of our girls totally and completely sucks. Both of them are kickers and both of them love the novelty of parents in bed with them. So much so that they want to chat and visit...in Kate's case that meant from 1:30-5:30am.

So. Not. Happy.

And now, for pictures! We had hoped the girls might nap on the way to the park which is why we left home right after lunch...nope.
No pictures that first day of swimming...way too busy wrangling happy kids. So, first photos of the trip were of Kate, Lucy and Leander taking a bath after swimming.
Erica, their au pair from Sweden, was invaluable, especially with all these kids.
Saturday morning fun before hitting the water park...with 5 children.
All three suited up and ready to go!
Lucy was obsessed with the floaties--spinning them around, moving them from one side of the lagoon to the other and floating down the lazy river.
Kate was obsessed with going down the slide, over and over and over and over...
Leander checking out the other slide.
More slide
Snack break
Meg and Leander in the wave lagoon and Jackie taking a nursing break.
Jackie made Len a chocolate birthday cake and made it vegan for me...only took three tries before it came out tasty! Thanks Jackie.
Oops...we forgot candles so Len blew out imaginary candles.
The girls' card for Len.
Naptime was a bust so they ended up on the floor playing with these cool magnet tiles
while the adults took some much-needed downtime.
Then it was back into the water.
 


We spent half of Sunday in the pool as well and finished up our visit with ice cream cones.
 

 
 
As you can see, Lucy was out on the ride home. Kate, not so much. Wide awake the entire day, even after being awake from 1:30-5:30am and playing in the water most of the day.

Although it was hectic at times (can you say FIVE children in one suite?), we had a blast and hope to do it again. Erica stayed back with all the kids once we got them into bed so Jackie, Meg, Len and I could go out for an adult meal, drinks and conversation. The kids played well together and I was really happy to see how much the girls loved the babies, August and Griffin (except when the babies grabbed one of their toys...).

Now it's back to reality in Chicago. Another winter snow storm is predicted for tomorrow and Wednesday.

Thursday, February 21, 2013

This and that

A few updates in no particular order since I'm quite short on time lately.

1. Nothing yet from MD Anderson on my tumor. I emailed the radiology report and 2 pictures that I had taken of the growth from June to February to the oncology nurse. She showed them to Dr. Zagars but he wanted to wait until their radiologists had a chance to look at all my films and compare it to their MRI in October. So, nothing yet is the bottom line.

2. Yesterday at the chiropractor, I took Lucy to the bathroom while Kate waited back in the office. When I came back Dr. Jason said he felt like he'd been talking to a teenager. Apparently she told him, "Mama doesn't like my attitude lately."

3. Dr. Vicari, Lucy's plastic surgeon for her cleft, made a giant move from Children's Hosp to Lutheran Hosp. This has turned into a giant PITA for me as getting to Children's downtown was a breeze. Lutheran is located out in the 'burbs which would be okay except that he currently only sees patients late in the afternoon on Tuesdays and Thursdays...when I don't have childcare. So, all three of us are headed out for a 3:30pm appt to meet with the new cleft team today. Just to add a little interest to the day, a snowstorm is predicted to start this afternoon, during the rush-hour commute, right as we're headed home. On a good day with no weather events, it would take at least an hour to get home during rush hour. I'm dreading (DREADING) the ride home tonight.

4. I've started having weird spells of utter exhaustion. The latest one hit yesterday afternoon. I literally felt like I couldn't move--every joint in my body was on fire and aching, like I had the flu. Julie was here starting at noon and I was supposed to take Lucy to the dentist for an adjustment to her palate expander at 3pm. I ended up calling to reschedule the appt and then went to bed at 3:30pm. Julie agreed to stay late until Len got home so I could stay in bed. I didn't get up until 6:30 this morning. What I wouldn't give to feel healthy again.

5. Len's 47th birthday is Saturday. We're planning to celebrate all weekend. More news on that next week.

6. My latest worry is that Kate may be developing asthma. She still has a dry cough but only when she is outside in the cold, when she has been running around (exercising) and at night when laying down. It's a dry cough that sounds more like she can't catch her breath. Looks like another appointment to put on the calendar.

Tuesday, February 19, 2013

Morning coffee

Mornings are never the same with two toddlers in your house.
CIMG8714 from Lisa on Vimeo.

Monday, February 18, 2013

Nutritional terrain panel



I went back to the Block Center for Integrative Cancer Treatment for the results of my latest series of blood tests 2 weeks ago. I first had these tests taken back in June which I discussed in this post and again in this post. The second post will explain what a lot of these tests are and why they are important when fighting cancer so I won't go into much detail here.
Here we go:
Antioxidant panel
Vitamin A/Retinol (optimal 18-77) 33 in June, 62 now.
Vitamin B6 (optimal 26-46.7) 6.6 in June, 34.7 now...vast improvement!
Vitamin B12 (optimal 211-946) 529 in June, 751 now.
Vitamin C (optimal >1.2) 1.8 in June, 2.3 now.
Vitamin D (optimal 50-80) 31.2 in June, 51.5 now.
Vitamin E (optimal >9.4) 12.4 in June, 17.8 now.
Coenzyme Q10 (optimal >1.3) .39 in June, 1.5 now.
Folic Acid (optimal >12) 14.5 in June, 12 now. May have dropped from radiation treatment.
Zinc (optimal 95-134) 70 in June, 82 now. Still suboptimal.

Inflammation panel
C-Reactive protein (optimal less than 1.0) 53.67 in June, 2.92 now.
Interleukin-6 (optimal less than 5.0) 12.8 in June, 1.4 now.
These are still too high but have shown great improvement.
MMP-9 (optimal less than 984) 394 in June, 193 now.


Circulation panel
Prothrombin Fragment 1.2 (optimal 87-352) 520 in June, 516 now.
Fibrinogen Antigen (optimal less than 350) 326 in June, 402 now.
These numbers are still too high which puts me at increased risk for blood clots. I'm now taking Nattokinase to try to lower this number.

Glycemia panel
Insulin (optimal 2.6-24.9 fasting) 42.8 in June, 10.6 now.
C-Peptide (optimal 1.1-4.4 fasting) 8.6 in June, 3.3 now.
Neither of these tests were taken when I was fasting so this shows great improvement.
Leptin (optimal, by weight, 10.6-120) 17.1 in June, 33.2 now.
IGF-1 (optimal, by age, 56-194) 107 in June, 122 now.

Immune panel
Natural killer cells (optimal 136-406) 120 in June, 84 now.
Activated T-cells (optimal 801-2402) 1230 in June, 814 now.
These were lowered by radiation which is probably why I keep getting sick.
Raji cells (less than 15.1) 5.4 in June, 7.1 now.

So that's the long and short of it. I'll continue on with the supplements and make some further changes to my diet. I do think that these numbers show why I did so well during radiation treatment and was able to do as much as I did with the girls while in Houston.

My main focus now needs to be on getting daily exercise and taking some time to manage my (increasingly) high level of stress. With that said, I need to get us bundled up and head to the Y.

Saturday, February 16, 2013

Xin Nian Kuai Le!

It's the Year of the Snake and although the official Chinese New Year was last weekend, the parades are this weekend. Tomorrow is the huge parade in Chinatown but we chose to do the smaller parade a block from our house today.
You can barely see them in this pic but there were two huge poles full of firecrackers. We weren't allowed to be close since we had children.
Once they were set off we backed up about a block from all the noise and smoke.
 
 
 
 
 
 
 Very loud.
Very, very loud.

 
Kate is growing more and more distressed.
It's a good thing we were only a block from home as it was all just too loud and cold (20 degrees) for Kate so Len took her home right at the start of the parade.
 The remnants from the firecrackers.
The band was a bit loud as well.
The City wasted no time in cleaning up--the band was barely past the bridge when the street sweeper got to work.
 Lucy was very into it all so we waited for them to return to the parade start point.
 
 At the end, all the Lion dancers, musicians and the dragon dancers posed for pictures.
 
 Lucy checking out one of the lion heads.
The lions dance in front of each shop to bring prosperity and good fortune for the coming year. I think they need to dance in front of our house...we could use it.
Here's a short video of the Dragon dance as it was coming to an end up Broadway.
  Chinese New Year 2013 from Lisa on Vimeo.

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