Scripts & Scraps from a Survivor

It’s funny how things work out.  We called Residence Inn before we left to make sure they had rooms and I booked the studio suite. When I got here, the woman at the front desk said…we decided to upgrade you to the two bedroom LOFT!  It’s an amazing hotel room.  I feel like I’m in ski loft. Plus..it had a murphy bed which the kids think is SO cool.

Then we ended up at Jason’s Deli at 7:30 to get take out because I wanted to get the kids to bed and we stayed in the pool too long.  The woman there that did my order, threw in cookies for all of us.

 Sometimes, the kindness of strangers comes at just the perfect time. Maybe Matthew was right…this trip was meant to be.

 Night all.

Deb

I’m bouncing back from yesterday.  Not 100% yet but I’m working on it. (laughing) Thanks to each and every one of you that emailed me.   You are all amazing!! :) 

Guess I didn’t realize how much I was counting on it cause it hit me way harder than I expected but….it’s another day now and life goes on.  I kind of wish I didn’t tell as many as I did (maybe the blog post wasn’t the way to go - laughing) but…I did say that I wanted this to help others and I guess…posting the good and the bad might help someone else, right?

I spent last night reading….9 Steps for Reversing or Preventing Cancer and other diseases (by Shivani Goodman, Ed. D) and Everyday Grace(by Marianne Williamson). My mom sent me the first one a while ago and I’ve read it quite a few times but it’s a good one. It talks about the effect of negative people in your life and how to heal yourself from within.  One of her theories is that she (she has cancer) can feel her symptoms get worse when she is under stress. I believe that as well. I personally think that one of the hardest things with cancer is to keep yourself positive and to surround yourself with people who believe in you.  I think that everyone has days when you want to give up (at least I do) but (at least for me), I have three kids that are counting on me to do the best I can every day.

I just started the second one because I bought it yesterday at the airport - I was looking for something inspirational and well…that’s what I found.  I started a plan last night to find the tools I need to continue fighting.  When I was first diganosed with stage IV in May of 04, I put together a business plan (of sorts….since I had been in business for so long..it was one thing that I knew how to do) and I was really good about following it but then Mari and Nicholas entered kindergarten which was my LONG term goal and well…I started slacking.

 So I’m back to working on a plan. The kids got home this morning from my in-laws and since we were all still packed up, I threw them in the car and we headed to Omaha, NE.  The kids decided to “name” our trip on the way as the Trip of Wonder and Adventure so….we decided to stop along the way (plus….just an FYI to anyone who is thinking of making the trip from central Iowa - there was only one lane open for MOST of 80 - it took us forever to get here).

 Here was our first stop:

It was such a cool shop that we may actually stop on the way back.  It was room and rooms and rooms like this:

I found this great carpenter box and thought it would look great in my scrapbook room but it was priced at $30 and I thought it was too much but isn’t it cool??

 We were planning on staying for one night in Omaha but my kids were so adorable when we got off the exit.  Matthew exclaimed “Mommy, this was meant to be - our favorite hotel (Residence Inn) with a Jason’s Deli, Target and Perkins!”  So…we are staying through Saturday.  We’ll leave early on Saturday though cause it’s Matthew’s birthday and he is having a friend over for the day.

 We are planning on the zoo in the morning and the pool in the afternoon. The only thing about jumping in the car so quickly is I didn’t exactly look at the weather and man…is it HOT!  Crazy HOT so I don’t think I’ll be walking around the zoo for 8 hours but since we’ve never been here, I think whatever we get done will be fun.  I also threw some white cardstock, recycled cardboard and some pink and black paper (have no idea how old that line was) in the car and decided I could do a book on my plan to keep myself busy. Not sure I’ll get to it but if I have time/energy, I have everything with me.

Anyways, just wanted you all to know I’m fine and I’ll just need to work a little harder to find my miracle but I’m not going to stop looking!!

 It’s now quiet here so those kids must finally be sleeping so I’m off to join them. Hope everyone had a great day and made wonderful memories.

Deb

We started at 8:30 this morning in appointments. We were given a schedule with back to back appointments for two days but Dr. Ueno wasn’t convinced that I was the best candidate for this trial because of all the treatment I have had over the past 4 years.  He said that he needs to do more homework to make a decision so…he is sending us home. This is the last thing I expected so it’s been a really hard day.  We ended up getting the hotel not to charge us for tonight and the airline to change our flight so we’ll be home late tonight.

 I said going into this if it was meant to be, it would be and I guess it isn’t but it’s a lot harder to deal with the reality. I really thought this was going to be my miracle.

There is a chance he’ll bring me back down for a PET scan at the end of August but it’s a small one.  They said they get back to me next month (which since I’ve been through this before sounds to me like they’ve made up their mind - not that I want to be negative - it’s just I’ve done this for too long). He did offer me the transplant using a donor but I turned him down. The chance of mortality on that one is WAY too high for me to be comfortable with it.  Guess I need to start working on another plan.

I will tell you that this hospital and operation down here is AMAZING. Like nothing I’ve ever seen before.  It’s so well coordinated and everyone is so incredibly helpful. 

 Just wanted to update all of you.  Will need some time to myself and my family for the next few days.

 Take care and have a great Wednesday.

Deb

Sorry I didn’t get to blog Monday night. I got the kids out of the house and off to their grandparents and then I had to clean up the mess they left me. (laughing)

NOTE: I can get incoming email here but I can’t get to get my send file to actually…..SEND! UGH. So lots have you replies waiting in there.

Here’s the thing about me…..when I get nervous, I scrapbook. Before I started scrabpooking in 2003, I would clean (like serious clean with organization and labels) but now…I make scrapbook messes instead. I think Mike would prefer for me to go back to the cleaning. You can definitely tell right now that cleaning is NOT on my priority list. :) I usually hate to come back to a dirty house but….I really needed my creative therapy. The closer I got to today and leaving for Texas, the more my anxiety has gone up so I started doing creative projects on Saturday for just a few hours, on Sunday for half of the day and yesterday….well, you get the idea :) I know I said that I was going into this thinking…that if it’s meant to be it’ll happen but….apparently, I was lying. :) I’m a nervous wreck. I’m just praying that they won’t find anything that will eliminate me from the trial (if it’s gone into an organ, I’m automatically out – it would be unlikely because I was just scanned on 5/27 but it’s always a possibility with me). I also have mixed feelings about getting in because if I do get in, I have to leave my kids for 100 days. I had a hard time when they went to full day kindergarten – I can’t even imagine this. Either way, it is in God’s hands and if this is the path I’m supposed to be on than it will happen and I’ll figure out a way to get through it. The thought though of being NED (No Evidence of Disease) is amazing so I think I have to keep my eye on the big prize right now. Of course, that would eliminate my weekly 3 hour chemo sessions – WHAT would I do with all my free time???? :) So…I’m sitting at Des Moines INTERNATIONAL Airport (I giggle every time I say that because in order to get out of here to some place international, you need to be in a FED EX box).  I took a picture of our luggage and how pathetic are we – for TWO of us for FOUR days and we have two laptops, a carry on, a purse and 2 suitcases. Plus..it’s like 100 degrees there so I don’t know why I brought so much stuff, I’m probably going to be in shorts and tshirts the whole time.  Anyways, I got a little off topic here. So…on Sunday, I made three altered journals (with locks and keys – they were 50% off in the dollar bins at Target – they were mermaid but we changed that. They were to go in these:

Each kids gets one and it has a bunch of handmade craft kids, a little scrapbook that tells all the reasons I love them, stickers, some candy glue sticks, crayons etc. I thought this way, they have plenty to do while I’m gone and will hopefully feel really loved by me. I also sent notes to be “delivered” to them on Thursday. I gave them $2 each (HUGE big deal to my kids) to spend in town with my in-laws. I also finished my Houston book yesterday:

(well…it needs more color on the cover – I’m thinking flower but we’ll see and it also needs ribbon but that’s easy to do on the plane (laughing)). I did a bit more this afternoon but hopefully will get a lot done on the plane. I also finished Mari’s pink blanket (I have been crocheting like a crazy lady cause it was way too big to take on the plane). My mom sent this yarn in April from her trip to the Amish country in PA. Aren’t the colors awesome? Thanks Mom. I brought three skeins with me and my crotchet needle. Let’s see what else did I do…I’m sure there was more but apparently the chemo I got at 9 am this morning is affecting my brain so….we’ll stick with that. :) BTW, I won Kristi’s Make Something Monday last week (thanks Kristi). Shannon sent me an AWESOME shirt. The quality is amazing – I really liked Café Press before this but this tshirt is SO soft. Here’s me with my NEW t-shirt:

Thanks Shannon! You and Kristi made me day. I order a Mom Journal but it didn’t arrive on time so hopefully, I can get it done when I get home. I also signed up for Kristi’s class for a summer book (which includes product directly from Danelle). I got this great idea from Kristi’s site on letting my kid help me with journaling. Two weeks ago, we had six baby bunnies in the back yard (by the way – that was the LONGEST week of can we bring them in Mommy? I think their Mommy left them, can we feed them? Can we have a pet bunny? Seriously like every 15 minutes all day was a new question about those bunnies!). Anyways, the kids asked me to do a scrapbook page so I told them I’d do it, if they did the journaling for me and guess what??? It worked! Of course on Nicholas’, I had to write some extra because I will never figure out the spelling of some of his words two years from now). :) I also have taken LOTS of pictures and thanks to Trish, I just put in an order for 200 from Snapfish. They are having a sale right now. I have the coupon code for 50 for a penny each. If you need it, just email me and I’ll get it to you. I did end up signing up for Stacy’s new class. As some of you knew, I kept going back and forth because I’m just not sure what life is going to bring right now but I’ve decided to take the plunge. I’m hoping to just get some of the stacks of photos into books. Well…that’s it from here. Somehow writing this was therapeutic and I feel better than I did when I walked into the airport. They are charging $10 to use their Wi-fi here so…you will all have to wait until I post this from the hotel. One quick favor from all of you (or anyone who reads this), if you are the praying type, please keep me in your prayers. I know I’m so blessed to be here and that so many survivors who were diagnosed before and after me weren’t so lucky. I wake up every morning grateful to be here but I will take all the prayers I can get because I know they work. Medically I don’t make sense. (laughing – I know…..I’m wide open here for comments – be gentle!!! :) ) My thought is it’s prayers and a great doctor (and medical team –from the scheduler to the nurses to the PET scan people, to my Oncologist and Radiation Oncolgist, etc. All those people make such a difference in my life. I try to thank them as much as I can because what they do is absolutely amazing. Hope everyone had a GREAT Monday. More from Houston later.

Deb

P.S. The airport is a GREAT place to tag photos in Adobe when you have a delay. :) We also got really delayed so this is WAY too long cause I kept coming back and adding more. Hope you get through it all – sorry so chatty. :)Update 10:15 pm: We arrived in Houston later than expected but we are here. We are staying in an amazing hotel (part of MDA). Our day tomorrow so far is cancer center at 7am for new patients, meet Kasey for a quick coffee and then off to meet Dr. Ueno at 9 am. Not sure how much I’ll be on tomorrow. I have absolutely NO idea what they have planned for me so….I’ll send out updates when I can. I’m off to BED.

I thought this was posted last night but apparently I saved it instead.  Anyways here you go.

Happy Birthday Mom!!  Hope you are having an amazing day.  Remember,  even though you are getting older, these birthdays represent that you get another year of life…..(laughing)…..of course, I’m probably one of the happiest woman to be in their 40’s.

We miss you and love you.

Hope you have a wonderful day and do whatever makes me you feel joyful.

 Love you.

Deb, Mike, Matthew, Mari and Nick

For those of you that I told (and I swear that’s everyone lately), I’m leaving on Tuesday for MD Anderson to be considered for the Stem Cell trial.  I have to leave the kids for 4 days which always makes me anxious. If I get in, I have to leave them for 100 days…which I don’t even want to tell you how crazy that makes me.

 It is exciting though. The trial is only for 36 women and when it’s full, it’s over.  Kasey had the first transplant and I met her through the breastcancer. org website.  She had hers in September and is still cancer free. It’s funny but she is going to be down in Houston while I’m there so we are trying to set up a time to meet.  I’m excited to talk to someone who has already been through this.

It would be a long road BUT…I could be cancer free and that in itself is just amazing. Imagine not going to chemo every week - what would I do with my 5 hours on Wednesdays???….laughing

 I’m a little anxious and a bit cranky today so if you call or visit, you’ve been forewarned.  Gotta run and get packing plus I want to make my Houston scrapbook (on the go).  I finished my stem cell binder last night.  We get back on Friday night late and Matthew’s birthday is on Saturday so…I have so much to organize…..laughing

So much to do…so little time.

Have a great Sunday everyone.

Deb

WOW…today started early. We had to be up and ready, kids ready and bikes ready at 10 am. That was WAY too early for me.  Everyone else was already outside when I stumbled out with my coffee in one hand in of course, the camera in the other.  I got pictures before the bike parade started and then….I sat down in my little chair and watched as the rest of my family (including Mike) went around the block, to the park and back for the parade.  I REALLY needed my coffee at that point.

 I live in a great neighborhood with really great families. Some of them decided that this was the year for the block party so we closed off the street and everyone brought the grills out and we all a ball. One family set up a slip and slide, another set up horseshoes and I, of course, did the craft table with the craft basket which is always a huge hit.  We also brought ribs, potato salad (my mom - thanks Mom for the recipe - that one is always a HUGE hit) and tomato mozzeralla salad.

 This is my week off chemo though which for me means low energy so at about 3, I came inside and climbed into my bed and I am so happy i did because boy did I need that. I slept for a little over an hour and then went back out to enjoy some more. :)  We had some neighbors over to watch fire works tonight and we made smores which is one of my FAVORITE things to do in the summer.

 I hope everyone reading this had a great celebration today with lots of amazing memories.

Deb

P.S. My camera is acting up but I’ll try to get pics up later.

Today we went to Creative Kidstuff (they had FREE decorating from 11-3) to decorate our bikes for the neighborhood parade 

 And yes, the people at Creative Kidstuff thought I was nuts for taking these pictures but I thought they were cool looking and would add color my pages (only a scrapbooker, right????…..laughing)

That was a lot of fun until….we noticed the rash ALL over Nicholas’ body. Not like just a little one - it was HUGE and raised and I started to freak so…we left there and went to the walk in clinic where they told us he had hives but aren’t sure from what.  I’ve been racking my brain for a day now and the only thing I can think of is…I switched from Clean and Clear ALL (laundry detergent) to regular ALL so…we are headed back to Clean and Clear ALL.  Anyone need TWO full bottles of regular ALL????? LOL :)  

I also go my hair cut.  I mean  really, really cut by a great woman named Kate. I LOVE what she did. Are you ready for this????

She cut off 4 INCHES and I feel great. I’m never going to have that long of hair again I’ve decided. This haircut is way easier and looks quite a bit more trendy (yup…that’s me, TRENDY…..laughing )

We headed out at night to the 4th of July parade and we had a ball. We went with my friend Nancy and her family and met some other friends there. The kids had a ball and they had the bouncy stuff and food in another section) so we walked over there and hung out for a while. It was very fun.  It’s the first time we’ve been in town for the 4th since 2003 and although, I’ve REALLY been missing Cape Cod this week, we had fun.  Neighborhood stufff starts early tomorrow so….gotta go to bed.  Oh and ya, by early, I mean 10 am….laughing….I’m really enjoying my mornings in this summer…..laughing

Hi everyone-

Life has been moving SO quickly these days.  First, I won the drawing this week for Kristi’s Make Something Monday so I was doing the happy dance. LOL :)  Thanks Kristi for getting me motivated these days. I’m having a ball and can’t wait till your class starts.

 Well….today, I went down to the BMW dealership to do the Ultimate ride and it was quite a day. I got there and they said we need your license. I handed it to them and then…they handed it back to me telling me it was expired. UGH.  I have to say though that I’m so glad I found out then because I’m flying to Houston on Tuesday for MD Anderson and it would have been REALLY bad if they turned me away from boarding the plane.  Apparently, in this state, they don’t send out reminder notices - I need to remember that five years from now.

 So…I called Mike (my husband) and he came over from work to drive for me but….it wasn’t quite what I expected. See, I was thinking….I’ll be alone in the car, sunglasses on, windows down, music blaring - how fun and instead, I got Mike driving and THREE kids in the backseat asking questions - where are we going? How long is this going to take? What does this button do?  You get the idea - those were some of the longest 12 miles I’ve driven. Not to mention that the largest BMW they had was a 5 passenger SUV so…three kids in the back and are you ready….TOUCHING.  LOL Not a good situation.  I’m sure other moms can relate to…he’s touching me, she has more room than I do, why does HE get to sit in the middle. LOL :)  Oh my.

 I left the dealership and drove directly to the DOT.  I didn’t realize that it was their first day open after the floods so it was PACKED in there.  The kids were so good (and it wasn’t just me this time that thought that - several people sitting there with us commented on them and I gave them my usual answer -thanks…you know every time I leave the house, I have a 50/50 chance of good behavior. LOL   At least, I’m smart enough to know that there are going to be “those days”.  So…it took 45 minutes but get this, because we waited over a half hour, they gave me my check back saying that I didn’t have to pay for the license because I waited so long. I swear I must have look so confused at that point with my mouth open because it’s the last thing I expected. LOL :)  So…overall, getting my new license was a great experience.  Plus…thankfully, I figured this out today. I would have been really upset if I couldn’t board the plane on Tuesday to Houston.  Just one of those “everything happens for a reason”…..laughing…

Have a great 4th everyone.

Deb 

One of my friends sent me this email a week ago and I haven’t stopped thinking about it.  Here’s what it said…………People come into your life for a reason, a season or a lifetime. 
When you know which one it is, you will know what to do for that person.
When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually. They may seem like a godsend and they are They are there for the reason you need them to be. Then, without any wrongdoing on your part or at an inconvenient time, this person will say or do something to bring the relationship to an end. Sometimes they die. Sometimes they walk away.  Sometimes they act up and force you to take a stand. What we must realize is that our need has been met, our desire fulfilled, their work is done. The prayer you sent up has been answered and now it is time to move on. 
Some people come into your life for a SEASON, because your turn has come to share, grow or learn. 
They bring you an experience of peace or make you laugh. 
They may teach you something you have never done. 
They usually give you an unbelievable amount of joy. 
Believe it, it is real. But only for a season. LIFETIME relationships teach you lifetime lessons, 
things you must build upon in order to have a solid emotional foundation. Your job is to accept the lesson, 
love the person and put what you have learned to use in all other relationships and areas of your life. It is said that love is blind but friendship is clairvoyant. Thank you for being a part of my life, whether you were a reason, a season or a lifetime It’s such a thought provoking poem when you read through it and I couldn’t help think today….what a great layout idea. I’m going to try to work on it this week but I was thinking about putting the poem on a two page layout and then doing the ali type thing of those 2×2 boxes with photos in them. I have so many photos of friends over the years (lots I’m still in touch with but some I’m not) and I thought this is a way I could showcase them all.  Plus…after Stacy J’s class, I have a category that is just friends so I actually know WHERE the photos are.  Have I mentioned lately HOW much I LOVED that class.  I’m actually thinking about taking it next year as well to fine tune my Library of Memories system.  Since the start of that class, I have completed 30 layouts which I think is more than I did all of last year.   Anyways, I’ll post it if it turns out the way I expect.  Sometimes these layouts look WAY better in my mind than they do on paper. LOL :)  Not sure if anyone else has that problem or if it’s just me.Have a great night.   I’m off to bed with LOTS to do tomorrow.Deb   P.S. Sorry about the format, I’ve been fighting with Wordpress for a while and it’s official…I’m tired and wordpress wins tonight. I’ll try to fix it tomorrow.