late night confessions

Some of you know me well enough to know that I tend to act happier than I usually am, and that I hate to be pitied. Apparently that works out great when you are healthy, but when you are sick but act healthy... well, people get confused. So, truth be told, I've been feeling pretty crappy lately. You know when you have the flu and feel like you've been run over by a truck and can't seem to get off the couch for anything? That's the feeling, plus some other fun chemo benefits like numb, clumsy, and freezing cold hands (yes, even in the summer), terrible stomach aches, and itchy skin. In light of this, I decided I needed to take a little break from chemo and will skip this weeks session for some much needed r&r.



Since just sitting here wallowing in pain is not like me either, I've been trying to figure out what exactly it is that makes me feel so yucky. All along I've been blaming it on the chemo, but after some research online and a good dose of reality, it finally hit me. I do have celiac after all. I'll admit it, I've totally been in denial these past few months. The specialist who first diagnosed me was 100% positive, and I trust him. But it SUCKS to be gluten intolerant! Eating out is crazy complicated, and shopping for wheat free products will break the bank. Plus, I absolutely love all things gooey and sweet - cake is practically it's own food group for me. So back in March after I'd been eating wheat free for 6 weeks and the Mayo clinic oncologist told me I didn't have Celiac Disease, I was all too happy to believe him. I should have known a cancer doc wouldn't have a clue about a thing like celiac... Yesterday I decided to do a test and not eat any wheat or gluten for 3 days and see how I feel. It's only been 30 hours, and incredibly, I feel great. Scratch terrible stomach aches off the chemo caused list. Anyone know how to make delicious wheat free cake?



The above confessions do not in any way mean that life is bad for me. I am so incredibly happy to be home and silently thank God for almost 4 whole months having passed and never once going to the hospital. I absolutely love hanging out with my family, the kids are doing so well and I am so proud of them. Brice and I continue to stay positive, although I have to admit this is really really tough on him. I've always been so chipper and independent... it's quite a switch for me to be needy and sullen. Oh well. Life is like that - just when you think you have something all figured out, the game changes. Good thing I love a challenge! Peace.

Monday...

It's Monday. crazy day. Mornings always are a rush for us, we are a later sleeping clan, and the boys have to be at preschool by 9:00 so the get dressed-breakfast-brush teeth- routine is sometimes super fast. This morning was also a chemo day, so I need to be there by 9:30 for my Dr appt, and then the infusion part that lasts until about 12:30. It all adds up to a long morning. usually I come home after that, eat some lunch in the sun, and then take a nap. After that it's laundry, dishes, and such, and then have dinner for the boys when Brice picks them up at 5:00. Who says not working is easy?

Anyway, today was a more exciting Dr day, as we got news. Since the begining of this saga the "organ of origin" for my particular cancer has been unknown. Which means that I've been taking chemo that my Dr calls "the kitchen sink" hoping that we were close to something that would help. Well a new kind of testing technology has popped up recently, and my Dr sent in my case to be analyzed and today we got the results... (drum roll please) and it turns out to be cancer of the small intestine.

Is the test 100% perfect? No, but the margin of error is so small and the next likley is that it's stomach cancer and the treatment for both is really really similar. SO! We have some answers and some really big decisions to make. The good news is that 2 of the 3 chemo drugs I've been taking are the same for the new recommendation - Oxolyplatin and Xloda. The other drug I've been on is called Gemcidabine (these could all be mispelled, I don't know!) anyway, that one's got to go and Dr wants to replace it with a new combo called Fullfox and another one that starts with an A that I can't remember. But these last two need to be infused through a port (a permanent access in the chest about as big as a dime that is surgically implanted) rather than through a regular IV in my arm. So do I go with the permanent scar that has fairly good documentation of working well. The goal is remission, so I am ready to do whatever is best. Arrrgh, decisions and knowledge are lots to think of. So that is what is on my mind tonight. If you have any ideas / opinions that are POSITIVE in nature, email me and let me know.

Other than that, I feel real good. And now I'm going to go have some ice cream with caramel sauce. Yum!

I've come to realize that I'm not much of a blogger. I know, there are people who share every detail of their lives on their blogs... talk about too much info! I think about writing quite often, but then never quite get around to it. Seems like there's always something more interactive to do, and I definitely enjoy the human contact better than the keyboard. For instance, I never turn the computer on when the kids are up. They are just attracted to the keys like candy, and my blog would turn into in-decipherable blather. Besides, they are more fun to tickle and listen to them laugh than try and type anyway. But this morning, they are at Grandma and Grandpa's so I am blogging none the less.

Been feeling okay, there's no getting around it, this chemo thing sucks. For a week at a time I feel puky and tired and gross, and then it gets better... Right about the time I start feeling 'normal' again it's time for another round of chemo drugs. Figures. My doctor is really pleased with how I'm doing, so I guess that's a good indicator. I try like crazy to put on weight, we joke about 'packing on the pounds' but so far I have made little progress no matter how much ice cream I eat.

The boys are all doing great. Wesley wanted his training wheels off his bike, so Brice removed them and we were prepared with the band-aids for the big learning curve... but no, he just took off and never looked back. Now he's trying to wheelie (thanks Travis for showing him tricks) and jump. Vincent has decided it's fun to talk and now says everything all the time. And watch out it you have something he wants, because he'll just come and take it. I love the impulsiveness of a 20 month old. They love their preschool, each day they come home with nifty paper sharks and bees and all sorts of drawings.

And Brice, my rock, is so wonderful. He takes great care of me and makes sure I am as comfy as a barfy lazy girl can be. Really, life is quite good right now. If only the weather would shake of this rainy blanket and let some sun in, it would be quite perfect indeed.

And the scan says...

So... last week I had a CT scan to check the status of this foreign glob, and we met with the doc on Thursday to discuss. It was overall a positive reading, although it brings reality to the table once again. They are having a bit of a hard time still reading what's going on inside of me, as they have all along, so no surprise there. Looks like the tumor portion has shrunk by about half, which is great. The rest of the fingerlike extrusions are there, but they can't tell if they are turned to scar tissue or still active. They haven't grown any, so that's good too. We decided to stay the course, which is chemo every two weeks for the next few weeks, then we'll take another kind of scan and re-evaluate. I feel pretty good about all this.

Now it's my turn to take the reigns and to my part, namely, eat all those damn many vitamins, drink the nasty tasting but good for you juice, and stop eating all the things I love - sweets, meats, and dairy. We'll see how that goes. Yes, I am committed to getting healthy and sticking around for a long time, but do they really think doing away with all my fave foods (milkshakes, cheese, and steak) is the way? I will do my best - look at those cute boys - they are inspiration enough to enjoy veggies all day every day, yes?

Summer... I love summer. Thanks for all of your support and calls my friends. I hope to see you soon, and if not know that I really appreciate all your well wishes and prayers. Love to you all! S

May update

Aloha! If you heard the rumor, well yes, it’s true, we just returned from the Big Island of Hawaii! So nice to feel the sun and what a time it was! Brice and I sat by the pool, enjoyed the beach, and mostly just hung out. He got in a game of golf at the Mauna Lani resort where we were staying, while I spent the day at the spa. So relaxing! Thank you to all who helped watch the kiddos so we could make this trip happen.

I know, it’s been forever since I have posted anything, Really it just means that I’m pretty happy and content. I tend to write more when life is more blue than sunny. And these last few weeks have been real good ones, so the computer stays tucked away more. Besides the fact that my wireless connection disappeared a few weeks ago... but now that we got that straightened out I should be online a bit more.

The boys are doing great. They love their preschool, and bring home adorable crafts each day. Vincent is starting to say every word we do, and Wesley is learning how to write his letters – he recently conquered the S. Brice is racing in the annual PPP today, it’s going to be a great race. I'll be down at the finish line to congratulate him, if you're in Bend today come on down and join in the festivities. The PPP is a wonderful community event.

Amazingly enough, I feel pretty good. Body must be getting used to the toxic cocktail they fill me with every two weeks. My hair is still in it’s proper place on my head, I can’t tell if I’m going to be able to keep it but I’m keeping my fingers crossed. I get tired easy and take lots of naps. There’s not too much nausea and puking, but it is part of life with chemo. I go in next week for a CT scan, we'll see if they can tell anything from it as this has not proven to be a reliable way of tracking so far. I guess I'm just not 'normal', ha ha, imagine that.

Keep sending the good thoughts, prayers, and mojo this way. I feel them all, and they keep me strong when the days get rough. You guys are all so amazing, I feel so blessed!

Spring and new life

I love this time of year, the changeable weather and the green starts to pop out everywhere it can hide. It's the time of year when all the the folks who haven't lived here long keep wondering when spring will get here. They agonize about the cold followed by the perfect sunny day followed by yes, more snow. "When will spring get here, is summer ever coming"? Patience my friends, spring IS here - you just have to enjoy the bits and pieces we get to their fullest.



That's kind of how my life is right now. Bits and pieces of bliss, some yucky days of of doctors appointments and chemo treatments, and a whole lotta waiting for this cycle to be over and summer to kick in. I feel like I am getting stronger in-between chemo treatments, but then every two weeks they come along and mow me down pretty good. This week has been particularly better, I think the nausea has been controlled, which allows me to eat, which is the key to all good things! Case in point, last night Brice and I went out on a date (how cool was that!) and I ordered the top sirloin and baked potato - delicious!



So the big news last week was of course the amazing fundraiser on the 4th. WOW! Brice and I are still just so overwhelmed with the generosity, compassion, and concern of this community. There had to have been 500 or so people there, and the money raised blew down every expectation even the organizers had set. So THANK YOU to all of you who attended, donated a raffle item, bought a raffle ticket, or mailed a check. We are ever so grateful!!!! Besides the fact that it was just a really fun, cool party! I want to particularly thank all those fabulous people at Deschutes Brewery who worked so hard on this event, as well as my friends Ali, ShanRae, and Addie who donated tons of time and expertise as well.



The first thing we did with some of the money was to find a really great preschool for the boys. They started last Wednesday, and they already love it. They get to go together, it's more of a smaller, in home sort of a place, and the owner is a sweetheart. Wesley's already so excited to be writing new letters, and Vincent apparently likes to take naps next to the pretty girl. Go figure.



Now that we have some time here at the house during the day, I can get more resting in and Brice has more time to take me to doctors appointments as well as hang out and help me during the day. We also are going to start a little garden, so that each day I can get out and dig my hands in the dirt. There is no healing to me quite like nature, so I am really looking forward to this. So, as the days warm up, and we march surely towards spring, I am full of hope and ready for to accept miracles. Look - a small one is happening right now - breakfast is served!

Positive Energy 101

The view from my living room this morning is glorious. I love to see Mt. Bachelor glistening in between the blowing trees. We bought this house in large part for this view. Brice likes to get up and 'check the weather report' on the mountain by just looking out the window with a cup of coffee. I think about flying down the slopes on my board, chasing my man (yes, he is TONS faster, and that's ok!) all the way to the bottom and then the laughs on the lift back up. For Christmas Brice got me new snowboard pants and jacket - I can't wait to wear them. I know I've been held back this year. But by next year, I am going to be gliding through the powder.

This is one of the many goals I have for myself. I see myself playing basketball with my teenage sons, attending their weddings, and celebrating Brice and my 50th wedding anniversary. Every day I visualize my body as better, stronger, and restored to health. I trust in this completely. I am not naive, and I am not in denial. You can think I am crazy, and that's okay. I just know in my heart that good comes when you plant good seeds.

So here's the 'Positive Energy 101' lesson of the day:

• Phrase your thoughts only in positive terms. Based on the universal law of attraction, they will bond with other positive thoughts and the energy field will grow and manifest.


• Phrase your thoughts in the now. Rather than saying 'Sharon will get better, say Sharon is healing'.) Putting good in the future will never germinate - it will remain forever in the future. All that matters is today.


• You can help me in this journey. The most powerful thing you can do is to believe in me.

Some of you live this already, and I love your for it. Some of you, dear friends, might think I have totally lost it. But I really really need your help, because negative thoughts or conversations will stall my healing. Just nod and go with me on this one.

I am starting chemotherapy on Monday. It will work, along with the other umpteen things I do. I am going to need your emails, phone calls, and encouragement now more than ever. And by the way, it is always the right time to call when you think about it - please don't get caught up thinking that I might be sleeping or it's a bad time... if those things are true, I simply turn off the ringer or don't answer.

But what I won't do is dwell on the negative. So please don't take it the wrong way when I redirect the conversation to a happy thought. I love to hear the fun things you are doing in your life - try and make me laugh, and that is what I cherish most. Send me funny video clips of your kids doing crazy things, or jokes or hilarious made up stories. My mission is single focused right now - return to optimal health.

Okay, I'll get off my soapbox now.