I haven't written anything lately, because on the cancer front there really is no new news. There is news about the girls weekend last month, when Carolyn, Lisa, Terrie and I met Mindy down in St. Pete's. WHAT A BLAST. Before we left, I was really missing my girls, and thought I didn't really need a trip. I couldn't have been more wrong. That trip left me happy, content, feeling special again and was just a darn good time. It is a bit of a letdown to have to put a suit on when there are radiation burns all over my body, along with surgery scars. But as long as I don't care, it doesn't seem like anyone else does either :) However there is something about being able to stare or walk next to the ocean and laugh with girlfriends that is good for the soul.

The next scan is in the beginning of January. No chemo, no medicines, just trying to focus on diet to move this along a bit faster. There was a couple weeks of "what can I possibly be thinking, even if I don't die now, it'll happen within 10 years". That's what has happened to the people that I've known, so why should I expect to be any different? That's a hard one to get through. You tell yourself that there's no guarantee you won't step off the curb and be hit by a bus tomorrow, or I'm lucky to have this time. Both are true, but you still would rather not have the odds stacked up the way they are. I don't know how to explain it, but like I said that was a couple weeks ago. After the trip, I haven't worried at all about it. Thank you God for girlfriends.

Salut

Scan was fine

There's good news :). Joe and I went down to Mayo on Monday for tests, scans and a Dr. visit. Turns out the blood work was fine, the scan showed the smaller tumors are getting even smaller, and the two larger ones are better from the April scan, but the same as the July scan. The fun part was taking steroids since I'm allergic to the contrast dye in CT scans. The idea being they suppress the immune system so that your body doesn't react to the dye. However they also suppressed everything else and I'm left with a nasty cold. No flu, but I'll still be hiding out in the house for awhile. The steroids didn't completely work either, I did have a reaction to the dye in the form of hives on my face and head. Nothing major enough for the nurses to come running, but they stared at me for 1/2 hour after the test. Probably thinking about how cool hives make a person look.....

Now I can stop freaking out about the cancer causing the fatigue and work on the usual suspects. Even though I said I was better at the diet, it could still be improved dramatically. And it's time to start walking again - right after I can breathe. My sister brought up the allergy explanation and that one works pretty well. I felt fabulous last Thurs right after a frost. For now we're going with that!

Thank you, thank you, thank you for the calls, emails, cards and comments. I feel truly blessed.

Full disclosure

We're back on the rollercoaster :). I've been tired for about a month and keep waiting to feel better. For awhile it made sense that it was diet (it was summertime after all), but I've been doing better on the diet and still feel crappy. My teeth hurt sometimes, my sinuses hurt sometimes and my intestines aren't happy with me sometimes. There have also been a couple sore in my mouth, which I haven't seen since the last of the chemo. Last week I went to see Dr. Timmerman and he checked my thyroid and blood counts. Since we haven't heard anything, I'm guessing I'll get the card in the mail saying everything looked fine. Isn't odd when you go in HOPING for a sinus infection or a thyroid problem?? I also asked about anything I could think of, lactose intolerance, celiac, a flu bug that won't develop or go away, dehydration, ANYTHING but the big C. So this morning I finally bit the bullet and called Mayo and asked for the next scan to be moved up. We haven't rec'd a schedule yet, but it was supposed to be around the end of Oct.

I guess you look for any explanation other than the obvious.... it's like knowing there's an elephant in the room but still trying to figure out where that big pile of crap came from. So I haven't written anything, but since you're asking, it looks like I'll need your prayers, thoughts and good energy for a little bit longer. Please. In the time before the scan, I'll still be trying to figure out if there are other animals in the room that could also have left a pile of poo. You never know, maybe there's a rhino hiding behing the elephant!

Where's summer?

School starts in 1 1/2 weeks. Can't believe it. We have tried to pack as much as possible into this summer and I'm now tired. So are the kids, so it's been very successful! Last week we were on a houseboat in Voyageurs Nat'l Park. Very, very beautiful and more fun than any of us expected. Mom bid on a houseboat at a raffle and had the high (and only) bid. We were a little worried about the weather (Mary said that if it rained, we wouldn't need to see each other again until Thanksgiving), but the weather was fabulous and we swam Sat and Sun. Most of us jumped off the slide in the back which was the favorite part for my kids. I'll post some pictures next time.... There was also a tickle fight which was the favorite part for a couple of the other kids. Lots of laughs, lots of food, lots of sun. Hard not to have a good time!

I have yet to golf this summer, Joe wants to go up to the Wilderness for a round, and there is a hike on the way up to the cabin we still haven't done. There is also the tube ride down a river that I promised a nephew and that will have to wind up the summer. The State Fair is here and this is the first year that I'm not looking forward to the cheese curds. There is probably not a ton of health food out there, but we'll survive :)

It's been a year since the first surgery, and I'm still kickin'. The moral of the story is not to let ANYONE label you based on statistics.

Summers are grand!

Grand Canyon Nat'l Park

The trip out West was incredible, we managed to squeeze in everything I wanted to see! The Grand Canyon was, of course, awesome. The hike we chose was mostly in the shade, and I kept Kate on the inside of the trail while we went down (and up). We did not make it to the bottom and some day we're going to do that, but not this time.

The next day we went up to Page AZ, and took a smooth water raft trip down the Colorado toward the Grand Canyon. The raft went through Glen Canyon and was very pretty. Joe claims I got into a fight with the guides, but they wanted us to sit on the tubes of the raft and I was worried about the kids (ok Kate) falling into the 46 degree water. If it was a fight, I lost since we all ended up on the tubes. No one fell off and we all managed to survive getting into the water at one of the stops.

Glen Canyon

After the raft ride, we went to Monument Valley. Beautiful, but you can sure tell it's not a National Park. The NP's are run SOO well, with maps, hikes, roads, bathrooms etc.... so from there we went up to Moab to sleep so we could hike in Arches Nat'l Park the next day.

Arches Nat'l Park

From there we did another marathon drive over to the West Utah and stayed in Cedar City. From there we headed for Bryce Canyon and the next day was Zion Nat'l Park. Both were gorgeous, but I think I like Bryce a bit better since the formations (hoodoos) were more unusual.

The kids didn't fight (much) and we ended up in Las Vegas for the last two nights and stayed by the pool. We were at Mandalay Bay (my friend Keith works for MGM and got us a deal), but since we checked in late, we were upgraded to the Four Seasons. Since the Four Seasons didn't have queen beds, I wanted to go back to Mandalay, but they were booked up. Joe claims I'm the only one in the history of Vegas that wanted to get out of the Four Seasons. It worked out for the best, because we could use the Mandalay's pool but they couldn't use ours. So we would go over to the wave pool and lazy river at Mandalay, then come back for quiet time at our pool. The quiet pool also had all the perks, they brought around frozen melon balls, cleaned sunglasses, had ice cold pitchers of lemon water at the tables which they kept filling with ice, evian face spritzers (yes, they sprayed our faces with Evian water), cold face towels. It was sweet. And we were on the 36th floor so we had an incredible view. Awesome, awesome, awesome.

Good news!

The scans showed that things are getting better! The radiologist said "incremental improvement in all areas". The spot on my hip looked really good, just a little bit of cancer left, and the spots on my spine were a little better than have been. There were no new spots and I couldn't see the spots on my lungs this time (they must have been from a cold last time). ALL excellent news. We chatted about a trial with the doc again. He is still going to be looking for a clinical trial, but would now only consider ones without much for side effects and that wouldn't require us going down to Rochester all the time. I'm still not sold on the clinical trial, especially when things are moving the right way, but told him he could let us know if he found anything. Then we talked about the Grand Canyon and rafting down the Colorado. It was the best visit to Mayo in almost a year.

We did book the trip to Utah, we fly into and out of Vegas and I'm hoping to see the Grand Canyon, Monument Valley, Arches, Bryce (and possibly Zion), and take a raft trip from Page for 1/2 day. Yes, it is a little aggressive but, except for the Grand Canyon, Monument Valley and the raft trip, everything is negotiable. It's also likely we'll be in some sort of heat shock since it has NOT been too warm here this summer. When I was calling and booking a couple hotels, I asked one of the agents if their outdoor pool was heated and was promptly told "honey, it's 106 out here, you don't need a heated pool". Live and learn.....

summertime

Yes, I've been remiss in my blogging duties, but summer is here and we've been busy! There was Historic Fort Snelling, the Wiesman museum, a couple weeks at the cabin, Kate's birthday party and still trying to get things organized/cleaned around the house. The first month with the girls home from school was harder, I was always tired, but now I can keep up (mostly)! I feel great, and don't have any symptoms of "the illness" which means I've been able to run around. That also means that I've done a few clutzy things, like fall off the 4-wheeler and have it run over my leg, and hurt my shoulder while vacuuming (if that doesn't prove I'm old I don't know what does), drop some chicken breasts in the oven - yes this is after the quiche. At least there was nothing that caused permanent damage!

We are in town for this week and next. Jenna wants her birthday party early and up at the cabin, so we're there for the weekend. Next week is another scan and tests (Wed at 10am, say a little prayer). Then I hope to either be back at the cabin or in Utah looking at National Parks. Still haven't decided. I'd like to believe that there will be plenty of time to see these things, but I've also learned that it's best not to procrastinate the things you really want to do.... I'll post the results of the scan, but probably won't be on again until next week. Have a good one!

SuperHero!

We had an awesome weekend. Joe's sister and brother-in-law came down from ND for the weekend and stayed at a hotel with a pool. The girls were in heaven!! They swam Sat and Sun and still didn't want to get out on Sun night to eat. Jeanne and Gary even went to school to have lunch with Kate (Jenna had a picnic and parents weren't allowed) on Monday. Kate came in for lunch, zoomed right past me and gave Gary a hug. Now I know what Joe feels like :) There was even some excitement! Saturday at the pool, Joe fished a little 1 or 2year old out of the deep end and saved her from drowning. She had wandered out of her hotel room and stepped right into the pool. Joe saw it happen, ran over and grabbed her, and pulled her out. The pool was so busy, no one had even noticed the little girl. Then it turns out, he's done this BEFORE! Back in the late 80's he fished a little kid about the same age out of a lake. There were other people there, but they thought the girl was bobbing along. Joe had been parking a boat trailer, realized she was drowning, ran past the other people, jumped in the lake and pulled her out. It's fairly ironic that he's saved more kids than some lifeguards, and he can't swim. One kid would be a hero, but two earns him Superhero status!!

Summer is supposed to be starting, but it barely got to 60 degrees yesterday. Today it will be all the way up to a whopping 64 degrees. Today is also the last day of school. We're all excited about having the summer to play (although I'm a tad nostalgic about my loss of freedom). We're going to start by having sleep overs tonight. That way we can begin the summer by being tired and cranky tomorrow! Hopefully they'll have enough fun tonight that tomorrow will be a nice peaceful day. If all else fails we can go to a matinee.

No Chemo

Hurray!! No chemo for the summer!! I'll get another scan in July and agreed to go in if I start feeling crappy or develop other symptoms, but since that's not going to happen NO CHEMO for the summer! My tumors aren't getting worse, they aren't getting better, they must be trying to figure out how to get out gracefully. The Dr. and I disagreed on whether the last round of chemo did any good. He claims that since I didn't have any progression, it must have been the chemo. I claim that since there hasn't been any progression since the Sept scan, it must not have been the chemo. There is no way of knowing for sure. Except, I'm right.

The company that tests the tumors against chemos needs fresh or frozen tissue. Mine is packed away in something like formaldehyde and wouldn't work. The doc didn't think he could get a surgeon to remove the one on my hip just for testing, so I have to check and see if they would be able to run their tests with whatever they could get from a needle biopsy. I thought the argument that the illness is gone only from the spots where the tumors were removed surgically, should warrant the removal of at least one more, but he didn't buy it. He still wants me on a clinical trial instead of another round of chemo, we'll talk more as the summer winds down.

For now it's explore Minnesota time. I'd like to take the girls camping (once), but since neither Joe or I are campers, we'll have to see if that actually gets done. I'm sure there will be adventures, both in the backyard and upstate. Here's hoping that everyone has a fabulous, safe, summer!

It's June!!

Jenna now has braces! Looks like a lot of metal on a little kid. She almost, yes almost, couldn't eat her chocolate cake last night. I'm sure it hurts, but she seems to manage for chocolate! Dr. visit today. We need to ask about delaying chemo for the summer, trying the company that tests chemos against your tumor, and get a better idea of the results of the last scan. There was a spot on my right hip which I assumed was the old spot, but the old spot is on the left hip. Joe said something after the appt, but I poo pooed him. Now I have to 'fess up and tell him he was right. HATE THAT!

Things are still going so well. I still can't believe my diagnosis compared to how I feel. I have never been so peaceful, calm and grateful for everything in my life. How do you compare that to the crap eating my bones? Since the trip out West is probably off for the summer, I would like to take the family to some of the state parks in MN. It would be fun to see a couple waterfalls, the headwaters of the Mississippi, the North Shore with the kids, and a couple museums for me. All scheduled around playdates, cabin trips and ortho appointments.

FYI, last week I made a yummy quiche with spinach. It was homemade (it was the first time I didn't pour it out of a box), and I dumped upside down in the oven 1/2 way through the baking time. Joe ended up cleaning it the next day since he is more anal, I mean detailed than I am. Bummer. We went out to eat instead and the rest of the weekend the kids would say that Dad should cook instead of me so that nothing got dropped. Since that was the first time destroying the meal and the oven, I refuse to listen. We're going to try and have quiche again tomorrow!

It's raining ducks

I spend most of my time convinced, or convincing myself that I'm not sick. By the way, we're no longer saying I have cancer, now it's just an "illness". It works most of the time, but there are those moments when you just get blindsided by the "illness" slapping you in the face. Pretty much whenever I try to plan something more than a week out, will I have chemo? Or when you hear about someone who's not doing well. Farrah Fawcett is all over the tv and internet. Or when you worry about the waffles you just ate, even if they did have real maple syrup on them. A whole foods diet is much harder than you think. Maybe it would be easier if I had a guarantee that it would work. Funny how life doesn't hand you any guarantees. Ha, ha.

It's been nice enough to go for bike rides, plant flowers, and avoid housework. Hopefully the sun will burn off the last of the colds that the girls and I have been carrying around for a couple weeks. It's soccer season and it would be nice if the weather would warm up a tad for us parents sitting on the fields....Kate asked me this morning if she was going to score a goal. WHAT did I do with that crystal ball?? She just figured out that Joe and I were boyfriend and girlfriend before we got married. For some reason that was just hilarious. Then she wanted to know if all the boys were sad when I married daddy. Bless her heart. Yes, Kate, they were devastated, crying for weeks, some of them are still in therapy....wait, that's Joe.

Next Dr. visit is the beginning of June, right after Jenna gets her braces (it is NOT fun watching your 8 year old get 4 teeth yanked out of her mouth). No scans, but conversation on next steps for treatment. I still want to have the chemos tested against my tumors before they go in the bod, hopefully delaying treatment until the end of summer.

For those of you that have seen the movie "Earth", they show two baby ducks falling out of a tree from 5 different camera angles, so Kate said it was raining ducks. It's not nearly as cute in the retelling, but it still makes me laugh!

Too much thinking

Here's what I'm thinking......the scan last week didn't show any real movement in the tumors since last September. Since chemo works on rapidly dividing cells, the only thing it would be working on would be my hair since the cancer is taking a little break. Therefore I should be able to postpone chemo for the summer !! :) YES I will discuss this with the Dr and probably find out why my theory is flawed, but I'm really enjoying getting out. The weather is great and I feel great. Although it was too hot for the dog on the walk today. We went about 1 1/2 blocks when she stopped and looked at me. She communicated telepathically that it was too hot for a 13 year old, black dog. So, we turned around and went home and I had to finish the walk on my own.

There was also a news story on Kare 11 about Precision Therapeutics. They test chemos against your tumor in the lab to see if they work BEFORE you shoot up. It doesn't always work since the body has a million variants the lab doesn't. Yet, doesn't it sound like a good idea? The last chemo didn't do anything, it would be nice to know which ones might....

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 :)-

Spring Break

The girls are on spring break this week. Kate is convinced that EVERYONE else in the world is on vacation outside Eden Prairie. For some reason it was very hard for her to understand that we weren't going to D.C. this week. Mary and Bill got us tix to the water park in Owatonna, which we did yesterday (the girls had a ball). They have play dates tomorrow and Thursday, but somehow none of that was enough on Saturday for Kate. UNTIL Jenna got all excited about the fact that when we do go, they'll be missing school. Since Jenna was excited, it was a little easier for Kate to accept.

Joe's leg finally started feeling better on Sunday. It was looking like New York and D.C. were going to be big problems. He thought it would have been pretty funny to have me wheeling him around NY while we were there, ha...ha.... but, he can finally hobble around without breaking a sweat and he's dropped the percocet dosage from maximum to minimum. He saw the Dr. today and is ok to fly next week, so we're good to go!

We're planning a happy hour April 22nd. More to come on that later.....

good news

Joe came home from the hospital on Tuesday! We were back at the Dr. office on Wednesday :( He didn't come home with any pain medication and really should have. They said that the clot will take months to dissolve and he will be in a lot of pain for at least the next 6-8 weeks. He doesn't like drugs any more than I do, but he's rather fond of the percocet now!

The other good news is that Northwest waived the change fee for the family which allowed us to rebook the D.C. trip two weeks later!!! So we can all still go. Hopefully Joe will be able to walk around a little bit better by then.

My last chemo was on Tuesday :). At least for awhile. We wait 4 weeks for another scan and then we would (hopefully) be approved for a clinical trial at that time. My Dr. is listening now when I tell him that we are going to cure this cancer. When I asked which therapy would be more likely to cure me, he said the clinical trial was more likely than the chemo. He said I was "swinging for the fence". Damn straight. He also chuckled a bit when I told him that I went skiing a couple weeks ago, he was obviously surprised, but he said "that's great". Maybe most chemo patients with a plate on their leg don't usually do such things.

Joe's status

Joe is still in the hospital. Apparently his blood is just as stubborn as the rest of him. He has a clot down most of his left leg, which will take months to dissipate. In the interim they are trying to thin his blood, but for the last couple days it refused. It started to get better this morning, so they hope that he'll be able to leave by tomorrow. He has now spent more time in the hospital than I have.... At least he has been well fed. His sister and brothers have been bringing food the whole time he's been admitted, so he can't gripe too much about hospital food!

The good news is that the blood is finally responding to medication, the bad news is that he can't go to D.C. on Saturday. So now we start arguing with the airline about how much it will cost to postpone the trip for a couple weeks. The really good news is that we can choose to postpone the trip and still all go!

The girls are fine, Kate is still pretty tired. They had busy weekends with their cousins, birthday parties, and visiting dad a couple times in the hospital. They aren't allowed to stay long, since they get a little wild and I'm afraid they're going to rip out Joe's IV. That would be a bad thing....

Enough Already

What's going on at your house? Ours is a disaster! The girl's school had an outbreak of the Norovirus. On Friday somewhere between 120 and 170 kids threw up AT the school or ON the bus. EWWWWW. Kate got it on Saturday night (Joe was out of town snowmobiling). I got it Monday night, but just for a couple hours thank goodness. Jenna got it around midnight Monday, and Joe ended up with it Tuesday morning. I've never washed so many sheets and towels in my life, or used as many Clorox wipes around the house!

Luckily I felt pretty good on Tuesday and could still get chemo. I didn't want to delay the chemo because otherwise next weeks dose would be too close to the D.C. trip and it wouldn't be any fun to be tired the whole time we were there. At least that worked out!! Dianne had to run out of the hair salon with wet hair to get me down to Mayo in time because Joe was sick and couldn't drive. So I'm in the middle of the crappy time right now. It was going ok, both girls got on the school bus this morning....BUT Joe ended up driving himself to the ER (why are guys so stubborn???). He has a clot in his leg. They are admitting him and telling him it's kind of a big deal. Joe of course, thinks it's no big deal, he's just dehydrated and will be fine after an IV.

Mary called this morning and asked how it was going.......she ended up saying "I'm coming up there right now, how much more can you take!". Thank God for family!

Facebook mania!!

I have yet to start on Facebook. Nora says it's addicting and from the looks of it, every one is on it except me. At least all of Spooner High, and Central College!! I'm going to be stubborn just a bit longer, since it sounds like something I'd want to spend all day on, looking for old friends. But I do love the comments the FBers have left!

Next Chemo round starts March 17. Joe also got word today that we have an appt at Sloan Kettering April 6th. Here we come New York City! Lets hope they have a brilliant idea to help cure me of this cancer thing. Sooner, rather than later would be nice, but greedy.

The girls have spring break soon, so we booked a trip to D.C. for 4 nights. I've been talking about the Cherry Blossoms for about 18 years, and it seems like there is no time like the present. It's one of those things that come up when you start to think about what you would do if you only had a year left to live. Now, I'm not saying that's all I have, but it helps to prioritize which things I would do. For instance, I've always wanted to see the Great Wall, but I'm not sure the kids would enjoy that trip as much as I would and at this point I'm not willing to leave them for that long, just for a vacation. D.C. they should have a pretty good time with (and it won't bankrupt the family - or not as much). This summer I want to take a car ride and see some of the National Parks out west, hike as much as my leg will allow. The girls and I are probably pretty well matched at this point :). As you can see, I'd like to see and do as much as possible with the family this year. It should be a good summer and we're taking advantage of it!!

What's UP

Ahhh, my week off chemo. It's the week I can get things done! Now even the Navelbine makes me tired - not sick like the Carboplatin - but really tired. That means that I'm now out of commission two of the three weeks it takes to finish a round of chemo. However....One more round of chemo and then a break!!! It will be nice to have NO chemo for while, although that scares the crap out of me. At least the chemo is stopping any cancer progression (remember when I didn't know if I'd even finish the chemo schedule, HA, big talk for a scardy cat). My Dr wants to find a clinical trial for me, but that is a hit or miss thing. Hopefully we would find one that knocks down the tumors and keeps me kicking for a nice long time. No guarantees on finding the right one. He also mentioned that I have on average 4 months before the tumors start growing again after the chemotherapy has been completed. Yikes! Time to start taking the diet, supplements and lifestyle changes seriously in order to keep the cancer at bay. I've been kind of lax on the diet since I'm on chemo - probably not the right attitude to take - but still serious enough spend a fortune at Whole Foods!!

Joe has sent all my info and records to Sloan-Kettering in NY and we're waiting on a response from them to see if they would take a peek at me to see if there is anything they would do differently from Mayo. I finally called the nutritionists and am waiting on a call back before I pick one. I saw a new TT practitioner and can't believe what a difference it makes in my attitude. I go in questioning how am I supposed to get through this and come out believing I'm already recovering. Thank goodness Julie offered to give me some sessions, otherwise I never would have tried it, or given it a chance! Hope is the best gift!!!!!

Hugs for nurses

My veins seem to be disappearing. There is always trouble at blood draws and trying to get the IV's started for chemo. Last Thurs I had to give blood, and the phlebotomist was committed to getting blood out of a vein on my right elbow. Have you ever had someone stick the needle in, miss the vein (in his defense my veins do "roll") and just keep moving the needle around hoping to hit the vein? I had to tell him that one wasn't going to work. He pulled the needle and went for another vein in the elbow, even though I mentioned that the ones on the hand looked pretty good today...... He did eventually get blood out of the second poke, for some reason it felt like he had been digging around in my arm for about, oh, an hour!

My counts were low, but still good enough for chemo last Friday. We went down to Mayo and Marcia was my nurse. She heated up the arm and then started smacking it, trying to get the veins to come up. Then she started singing to my arm. The other nurse came running in asking if Marcia was really singing, and I had to admit that she was, but it worked. She got a vein to come up and the IV in with one stick. I complemented her on the singing and IV, she said she'd been training for that stick for 15 years. You gotta love those chemo nurses...... I have a feeling that most good nurses never get the credit they deserve. Lisa and Deb can probably attest to that. But a good nurse can change the whole experience around, at least in the chemo ward. Marcia made me laugh (as well as the 4 other patients in our bay), and obviously cared a great deal about what she did. Like I said, ya gotta love em!!

Still learning

Sue asked awhile ago what I've learned through this. I've been hesitant to put anything down, since I'm not sure what's going to work. BUT there are some things that are absolute:
1) When you have something in your eye, do not try and pull the upper eyelid over the lower one. I did this and removed about 5 eyelashes, the eyelid didn't go anywhere. This may work again after chemo, but not while my hair is falling out.
2) The tracks in my arms make me look like an addict. So far the lack of hair has kept anyone from arresting me.
3) You can't shield your kids from everything. Last night Jenna admitted someone told her that people with cancer die early, and she asked if I was going to die. When I told her I plan on living a very long time, she said "as long as grandma?". Sorry mom, but that did give me a little chuckle. Then, bless her little heart, she moved on to the next big topic; getting braces.
4) Nutrition matters. I feel better right after chemo if I'm eating salads and homemade soup, rather than junk food. I've also started taking a multi-vitamin, multi mineral tablet, a green tea supplement and a turmeric supplement daily. Cut out sugar, or as much as possible. You shouldn't be having dessert with every meal, bring it back to two meals a week. Do as I say on this, not as I do :)
5) Get some exercise. Duh, enough said.
6) Many of the things I've read have talked about reducing inflammation. I still don't know how to do this, other than cutting out dairy. There must me more to it, but I've missed it, or haven't understood. This one isn't really absolute, but thought I'd add it in anyway.
7) You have no idea how people will react, or even who will react. I am still amazed at the outpouring of support by both friends and family. One of the reasons cancer is such a crappy disease is because you feel so out of control. Dr.s will tell you that you can recieve chemo, radiation and surgery, but there isn't anything you can do to fight. Baloney. There is always something else to try, do, read, pray for, etc...

I'm still learing, still trying, still praying. Thank you to my friends and family doing the same.

Chemo today

Today I'm a pincushion. They tried to get blood twice in one arm at the elbow, twice in the other arm at the elbow and then went for the hand. Perhaps a port would be a good idea. The second nurse (yes, it took two of them) said I had to go out the back door so no one would see the job they did on me.

We just got out of the Dr. office, Joe asked about prognosis, but the Dr. could only quote generalities. See Dr. Doom and Gloom below or google cancer of unknown primary for his response. Next time either Joe or the Dr. want to talk about it, I'm leaving the room. It can be hard to maintain the attitude that I'm going to beat this when faced with the statistics on the disease.

I had hoped this would be my last round of chemo for awhile, but it sounds like I'll have one more round after this one. The clinical trials that he signed me up for have a waiting list of a couple months - if I get approved for them. We also asked about a second opinion on treatment and he had no problem with us going to Sloan Kettering or MD Anderson. He was much less enthused about the IV Vitamin C treatments and ambivalent about the supplements.

I'm not really looking forward to chemo today. The girls are off school on Monday and that's the low point from treatment. I'm looking for playdates for the afternoon (Joe will stay home in the morning). Maybe if I just took some of the drugs they've given me I'd be able to play with them, but I'm not sure of the side effects at this point. What if I took one and zonked into the table for a 4 hour nap. Kate would love it, Jenna would go for the candy jar, then they MIGHT call dad, or China.

Quick update

The next chemo round isn't until Friday the 20th. My Dr. was booked up until then, but technically it was only supposed to be next Tues - not that much of a delay. Joe's researching a second opinion with MD Anderson in Houston or Sloan Kettering in NY. Since neither of us are thrilled with the latest direction in treatment, there must be SOMETHING else we can do. He gets to follow the more conventional route and I get to pursue the "alternative" stuff. I'm starting to get more excited about the IV Vitamin C route and would like to try that once chemo is over. In the mean time I've started taking a multi vitamin that makes my pee look like you can see it from the space shuttle - it's not a color normally found in nature! Too much information for some of you? I have other supplements, but thought I'd run them by the Dr. before taking.

The last round of chemo has worn off and I'm feeling pretty good. Even my arm is better (the chemo leaves tracks and a lot of pain). Last week Julie gave me a Therapeutic Touch session, this week I had a massage (compliments of the ACSers :) and last night Joe and I went to the Franciscan ministry in St. Paul. There were three people that volunteer to pray with you and lay hands on you. I was so nervous before we went in, worried that I would get kicked out for not being Catholic, or would start laughing if they spoke in tongues, but it ended up being a wonderful time. It's amazing how people that you don't know can care about you, kind of builds up your belief in humanity!!

Pink Wig

Lisa brought over a pink wig for me. As you can see, it was more of a punk look than the "Sex in the City Look" that I was going for. Maybe if I would have worn mascara......

Lisa is also the one that gave me my Neulasta shot in the MOA parking lot on Wednesday. I almost dropped it in the car which freaked me out a bit (it's a really expensive shot), but she saved the day and stuck it right in! Then we went and did a couple laps around the mall. I'm getting more fatigued than usual, but we still made it around a couple times. There were some muscles aches and pains from the shot, but there didn't appear to be any other side effects. This is the shot that is supposed to get my white blood cell counts up after chemo on Tues. It's a bit ironic that my counts were higher before this chemo than they have been since we started and it's the first time I had the shot.

It's also a bit ironic that everyone in the house had a cold EXCEPT the one with the compromised immune system. HA. Apparently I'm the only one that washes their hands twenty times a day, or my white blood cells just show up when I need them. Either way something is working! Jenna and Joe have pretty active colds, Kate's seems to come and go as necessary for hugs or other attention.

I'm still researching other options. I have a couple nutritionists to interview, there is an IV Vitamin C therapy north of St. Cloud and a clinic in Mexico (on the beach) to check out. There is a homeopath in St. Cloud, supplements to figure out, and many, many books to read. Julie has offered to do energy healing (Therapeutic Touch) and I'm REALLY excited about that. Everyone has been asking about Dr. GU, and I haven't gone for a couple weeks (probably why I'm so tired), but I'll go again after the next chemo treatment. I can't do his herbs anymore, but the acupuncture works for me. This cancer business can be a full time job!!

No sleep

Some of my friends at work held a prayer chain for me on Thurs. It worked! Friday I was over my funk from the test results, and believe that a new direction is needed for my treatment. It somehow became crystal clear after hearing about the prayer chain. The discussion with the Dr. pointed out that we are no longer on the same page. There are other things to start trying. Don't laugh, but I just read Suzanne Somer's book "Breakthrough, 8 steps to Wellness". She does seem a bit out there sometimes, but it opened my eyes to all the possibilities in treating cancer beside chemo and radiation. I was so excited for a couple days that it was hard to sleep.

I remember saying to the Dr, that if the chemo was working, I wanted to stay on it until the cancer was gone. He responded that my body wouldn't be able to handle it for that long, it can't handle the toxicity levels that prolonged chemo would bring. He also said that in 6 months I would be glad of that. He was right. After another chemo treatment on Tues, I feel crappy. Not crappy enough that I can't move, but crappy enough. I can't get anyone at Mayo to admit that diet really makes a difference - not even the nutritionists. There is so much information out there and it all contradicts itself, no wonder people just follow the traditional path. Who has time to figure out what's right and what really works?? I just finally decided that I'll finish out the chemo (maybe) while researching my other options. I have never believed in drugs (for most of my own problems - there is certainly a place for them in medicine - although after surgery the Vicodin sure was nice :)) Why should I continue to compromise that belief now? There are other options to explore. Right after the crappy wears off.

Scan day

It could be worse. We went down to Rochester yesterday for a PET scan (EARLY in the morning). The great news is that the tumors on my sternum and leg look good, there is not much, if any, cancer activity. The less than great news is that the tumors on my spine are still there and haven't reduced at all. The glass half full side of me will now tell you that at least they aren't any bigger. There are possibly two new tumors, one on my right arm, up by the shoulder and one in a lymph node on the right side in the pelvic region. They aren't showing up as very "hot", just a tiny bit of color which is why the Dr. is sceptical about whether they really are cancerous.

We then chatted about next steps and it sounds like I'll have another couple rounds of chemo and be put on the waiting list for a clinical trial. The Dr. will then look for the right drug to keep the cancer at bay and I'd probably be taking it for the rest of my life. WHOA horsey. I explained that my goal was to get rid of this thing and NOT be on these kind of drugs forever. HE explained that his goal is just to keep the cancer from spreading and to reduce it as much as possible, but his experience shows that it is unrealistic to have these type of tumors "go away". So we agreed to disagree on our goals. My goals remains unchanged. In case you haven't picked up on it, I don't like taking drugs, not even Tylenol or Ibuprofen. Taking chemo or any other toxic drug for the long term is NOT my idea of good living.

I am a little disappointed in the results as I had hoped for all the tumors to be receding. This means that I have to dig a little deeper, learn more and get better at practicing some of the things that I've been learning. It means it will take longer to reach my goals than I had hoped. I guess I haven't learned enough from the cancer yet, but it is giving me a chance to keep learning, for that I am grateful.

I passed on the chemo for the day. My counts are still low and since this sounds like a long term type of adventure, we'll go back next week for treatment. It gives me another good weekend :)

Mind mush

I used to be a competent professional. Now, not so much. I had lunch with three awesome people and told them to meet me at Turtles in St. Louis Park off 100 on Excelsior. Ray leaves this message "ah, I think you have your animals mixed up. Did you mean Bunny's?". Yes, I did mean Bunny's. The other day while going for a walk I interviewed myself, and I didn't get the job. My mind is turning to mush; words go missing, people that I've known for years no longer have names. I'm going to blame the cancer for now, it really can't be old age yet...right??

Lately things seem pretty darn good. I can get around, the cold is pretty much gone, it seems a TAD cold, but we do live in Minnesota. The other day I even made it around three floors of the MOA! Of course I wasn't setting any land speed records, but it was great conversation (with Jamie, this time it wasn't with myself) and it felt good to move around.

Status quo

Here is a picture of the baldie at Xmas with brother in law Darin and Kate. Notice Kate is dressed up in cute dress with santa hat. She has worn this outfit to school twice since Xmas, hat and all. I used to wonder how people with small children got through things like this. Now I wonder how they would do it without kids.

Betty, I tried to take a picture of the lights outside, but it didn't turn out very well. They really do look pretty cool, I'll try again at some point. Joe's friend Paul had them put up and it made the house look quite festive!! Thanks Paul!

The leg is better, but I had a cold last week that scared me a bit. I was worried that it would morph into the flu or some infection which would leave me in the hospital. However, the cold was a little more intense than I'm used to, but it went through all the normal stages pretty quickly and now is just a minor irritation in my sinuses. Chemo last week wasn't any big deal, it was just the Navelbine (yes, the Dr. reduced the dose) and there weren't any side effects other than some nausea and fatigue. By now I feel pretty darn good, and we don't go back until the 22nd. That will be a busy day because of the PET SCAN!!! It's at 7:30 in the morning, but at least we'll have an idea on how well the chemo and radiation are working.

I had a massage today and it was AWESOME. It's one of the best things in the world and it was even better because the therapist came to the house. I'm not even going to pretend to help shovel today and ruin a good massage :) It was my friend Amy's aunt, and Amy arranged the whole deal. Thank you Amy!!

The new chemo doesn't seem to promote hair loss like the first ones. The hairs on my chin started coming back, isn't that a treat......

Happy New Year

Did everyone have happy holidays? We did. The girls have been thoroughly spoiled, the house is still a mess and we had loads of time with family. The icing on the cake was NOT having chemo on the week of Christmas. You don't realize what a blessing that is until you have it the week of New Years Eve :)

Just to catch everyone up, I did have some issues with my leg and had to stop walking (for exercise) for awhile. It seems to be better so it's back to the daily walks. There was PMS inspired depression, but I'm heading into chemo inspired menopause so that's ok for short bits. I really don't see the downside of menopause. I'm done having kids - it's really a young persons sport - no more mood swings, no more being cranky for a week at a time, no more embarrassing trips to the store for Joe, no more cramps and bloating, its about 10 years ahead of schedule, but.....this is a good thing!!!

We had mommy and me days with the girls. Kate thought Underwater Adventures was boring, so I had to take her on a couple roller coaster rides at the mall to save the day. It worked because she asked when the next mommy and me day was going to be. Jenna and I went to the mall and had our manny and peddys. She got pink fingers and blue toenails. She had a huge smile on her face when we went in and asked when we could go back on the way out. Aunt Jeanne came down from Grand Forks and pretty much stayed with the kids all week. It was pretty much a life saver since I had chemo on Tues and by Thurs I was wiped out. Its easier when the kids are at school and home late in the afternoon, trying to keep up with two tornados all day after chemo is more of a challenge.

My counts are still low, but we're on for tomorrow's chemo. The Dr. talked about reducing the dosage based on my counts, so I called him a chicken. I'm SURE that will change his mind. It's only been two months since I've been on chemo, it feels like 12. The next scan is supposed to be around the 20th of this month. It will be on the same day as chemo for Round 4. After tomorrow I'll be 1/2 way through this treatment schedule, hurrah, hurrah!

FYI, today at target I got a coupon for $3 off John Frieda hair care products :) HA. Maybe they have a good scalp balm!

SUE BOO WHAT IS GOING ON??? Are you living in Hong Kong?