Updates

Happy hour last week was great. It was SOO nice to see people that I talk to all the time as well as those friends that you only see at events like a happy hour! I had so much fun, but the time went too fast. We'll have to have another after the next round of chemo!!

More tests and pokings last Thurs and Friday. The scan shows that there is still cancer in the same spots, but probably not anything new. I say probably because I had a cold and there were a couple lymph nodes that lit up in my chest. The Dr. said they could have been cancer or the cold, we'll have to keep an eye on it. Other than that there were no new spots and the two spots that were new last time didn't pop up. It did make me a bit mad, since I called before the scan to check on rescheduling due to my cold. The response I got was that the machine could tell the difference between a cold and cancer. HA, not on me. Now we have to wait another 3-4 months to find out, when I would have been perfectly fine waiting a couple more weeks for the scan. The results could have been better, could have been LOTS worse. I still have time to figure out how to get rid of this disease. The report from NY is still not in, the Dr out there had a death in the family and was out for a couple weeks. Even though I was scheduled to start a clinical trial on Monday, we agreed to postpone for a week so that we could discuss the chemo regimen that the NY Dr suggested.

I'm getting used to this feeling good thing, not excited about starting chemo again. I keep trying to keep in mind that it's a short term bad for a long term good, but I'm more of an immediate gratification type of person :)

DC

Ok, I didn't get this done last week...I ended up with some nasty cold that is taking it's time leaving. BUT better late than never. Happy Hour tonight, I'm very excited! I'll be there from 5:30 to 7pm. Pretty sure I won't last much longer than that :)

DC was incredible. We all had so much fun. There were no schedules, we bought trolley tix so we could just hop on and off whenever we felt the need. The weather was ok, Sunday was beautiful, the rest of the days were overcast, but manageable. By the time we were tired from sightseeing everyday the girls would want to go swimming, and since neither Joe or I could do marathon walking, everyone was tired at the same time. The day at the Easter Egg Roll was interesting, Kate did NOT want to be there and kept insisting we leave. Jenna was a good sport and would at least let us take her picture (as you can see, Kate is not good at cooperating for pictures, ever).

Ellie, Liz and Andrew met us for dinner one night and the girls wanted to adopt Ellie. They had so much fun playing with her, Kate actually let me take her picture..... We saw the monuments, the zoo, the White House south lawn (even the new swingset and garden), and didn't once worry about cancer, diet, chemo, etc! It was beautiful :)

Happy Hour

I'll talk about the D.C trip tomorrow (it was SOOO much fun), but wanted to get more details out on the happy hour next week. Time has been rushing past the last couple weeks, but it's time to take a break, see some friends and celebrate! Since I'm off chemo -at least for 4 weeks - and Joe's out of the hospital and can walk without a limp, it's time to celebrate :) Next Wednesday the 22 let's meet at the Santorini's in Eden Prairie for Happy Hour. I would like to see YOU. People keep asking what they can do, and I understand the need to want to help, so, well, show up. That will help lift my spirits in ways that gifts and things can't! Let's have some laughs, catch up and have FUN before what little hair there is falls out again.

busted

Jenna was asking questions the other day while I was trying to finish something on the computer and only 1/2 paying attention to her. Unfortunately she asked if I was going to hide Easter eggs this year (since we'll be in DC) and I responded with "of course, we hide them every year". Whoops. IMMEDIATELY both Jenna and Kate start on me about the Easter Bunny and isn't he real? doesn't he hide the eggs? Now it's a very slippery slope from the Easter Bunny to Santa Claus and I really didn't want it to go there. So I shot back some lame explanation about how we don't know when the Easter Bunny shows up, so we've just always hid the eggs. Not sure if they bought it, but then I distracted them with ice cream.

I feel much better after dropping the protein, raw garlic diet, and am really looking forward to DC!

Happy Easter to those who celebrate, have a GREAT weekend to everyone.

Close call

Kate is "star of the week" at school. We had to create a posterboard with pictures that are important to Kate and she gets up in front of the class to talk about them. She asked Grandma to come and Joe and I were there as well. It is just amazing that a girl who can be heard 2 blocks from home when she's playing, has a hard time speaking loud enough for the 2nd row in class to hear her. It was a lot of fun to see how different she acts when all the attention is on her vs. when she is trying to get all the attention :)

Good news about D.C.. Joe had requested a Capital Tour from Erik Paulsen's website. They called yesterday after we were home from NY and said they could get us into the White House Easter Egg roll!! I can't wait! Just us and 35,000 of the Obama's closest friends. We're still waiting to get the email on the dress code....that could be rather interesting. Hopefully the scanner to get into the grounds won't be any more powerful than the one at the airport. I would hate to be tackled in front of the girls at the White House just because the plate in my leg set off some kind of sensor!

The close call came this morning from Ebony. Mom had said on Monday Ebony had a hard time getting around in the morning. Today when Joe let her out he had to carry her back in because her back legs weren't working. We all thought this was it, and by the time we got to the vet I was bawling. The vet came in and looked her over and said that she has old dog vestibular disease. It should go away in a week or two!!! She said it was the best news you can get for a dog Ebony's age (she'll be thirteen May 2). Can you believe that?? She doesn't even have to take medication, it should get better on it's own. Good news for us! I'm not ready yet to take walks by myself. I tried to prepare the girls this morning in case she wasn't going to be able to come back from the vet with us. They seemed concerned until Kate piped up with "can we get a Pug?". Maybe they won't be as affected as Joe and I when the time finally does come.

New York, New York

We are back from NY! We saw a Dr. at Sloan-Kettering that sees all their unknown primary cancers. He was great. He started by apologizing that he had kept us waiting for, oh, about 45 minutes, but he was reading through all the tests, notes, reports etc. He then sat and talked with us for about an hour and did a short physical exam. He said that there is hope and lots of therapies to try (of course they are all chemo, but I really liked his attitude). He also said that I need a colonoscopy and an endoscopy - yuck - but it makes sense. They would be the last tests to perform that may "uncover" the primary tumor. He had another patient with unknown primary with metastases to the bone and they responded very well to a couple different chemos than I have tried, well enough that they no longer have tumors! Ya gotta like that :). The pathologists at the clinic were not done with the slides from the biopsies, since it took Mayo over a week to look at them, I wasn't surprised. We'll see if the Mayo doc is receptive to trying the chemos the NY doc had success with.....I have a feeling he would rather have me in a clinical trial, but we'll have the discussion!

The other big news is the new/old nutritionist. Karen Hurd in Fall Creek, WI has had many, many successes as a nutritionist, but I'm not going to be one of them. We had a phone consult on Friday and she put me on 6 servings of animals proteins, 6 servings of beans, 4 tsp of freshly minced raw garlic and if possible 5 servings of veggies a day. Also 2000 mg of vit c 4 times a day and 300,000 IU's of beta carotene daily. Couldn't do it. The garlic was oozing out of my pores, my kids wouldn't even kiss me good night. EVERYTHING else I've read talks about veggie proteins or whole grains and reducing animal proteins. Some books talk about eliminating animal proteins, but it looks to me like you should just be careful of the amount, not eliminate. Other books talk about too much beta carotene and how your body isn't able to absorb other nutrients if you're getting too much. Vit C tablets counteract the chemo and the oncologist at SK said that I shouldn't be taking that much vit c. I realize that the oncologists are not nutritionists but on this one I'll agree. So, I've started rereading the nutrition books to see if I can glean any more info from them before trying the next nutritionist. Wish me luck!

PS, the plate in my leg didn't set off the alarms at airport security. Apparently there is enough fat on top of it to minimize the effect :)-