Life with the Moonhils

A Happy Birthday

2012-02-14T16:35:00.001-05:00

Happy Birthday, Beth Ellen!!!!
We had so much fun the past few days in Utah! We surprised Beth Ellen (Paul's oldest sister) for her 40th birthday!!! Unfortunately she ended up getting sick but we were able to pack in some good fun before she crashed hard.

Happy Birthday, BE. Hope you are starting to feel better.

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Thank you Aunt Rachael & Uncle Ben!!!

2012-01-06T10:34:00.000-05:00

For Christmas, my brother and his wife got us ticket to the Philharmonic to see the performance, BLAST!!!
It was an absolute blast for sure.
You can watch their promo video here:

This was some serious entertainment and it was myself with Paul and Zane. Zane was GLUED the entire time. It was about an hour and a half with an intermission and he was so hooked! It was just as much fun watching his face as it was to watch the performance for me!So, Zane has been inspired, Aunt Rachael and Uncle Ben!!! He came home and the next day he sat down at his drum set which I had really thought he has lost interest in, and began playing like this next video. He will play like this now for a very LONG time. He is so focused and he has entirely picked this up from this show and this show only! It is awesome.We really wish that Ben and Rachael had been with us of course. They are so great about their gifts and are always trying to find performances like this one to gift us along the way. I swear, without them our culture and art exposure would be starved. (They are the ones who took us to Zane's first ever concert when he was about 7 months old and of course it is such a cool one to say is your "first concert"!!! It was Old Crow Medicine Show and if you don't know them... check em out for sure.)So a thank you show to Uncle Ben and Aunt Rachael...WE LOVE YOU GUYS SO MUCH!!!!

2011-10-28T10:03:00.000-04:00

One Year Ago Today

- I had a stem cell transplant.

- I went on to live this year loving my family and friends.

- I learned how to take deep meaningful breathes.

Thank you to so many. For loving me, supporting me, hugging me, helping me through and then letting me figure out how to live this new life.

(It is weird because right now even looking at these pictures makes me feel ill and sick to my stomach. It is funny how our body and mind remembers so well. As the many years pass that will get better I hope!)

He is 5ish.

2011-10-10T13:28:00.002-04:00

Zane is 5ish. That is what he will tell you when you ask him how old he is. He is really excited to be 5 at the end of the month. I can not believe he is 5ish...

My Kindermusic Crew

2011-09-30T14:24:00.001-04:00

Every Tuesday after school I pick up Zane along with a couple o his friends an we go to a Kindermusic class at the Philharmonic called Music for the Young Child for ages 5-7 years. It is part one of a four part series and it is so wonderful!!! We have had a hard time figuring out a goo way to get Zane involved with something musically. We did not really want him to necessarily "choose" an instrument at this age but wanted some exposure. I found his class available this semester and jumped on it!! It will teach him all sorts of music and theory but in a really fun and active environment. He has been having some fun Tuesdays and on this particular day Sierra got to come along and play with me while I waited for the class to end. The class is an hour and the first 45 minutes is on their own and then the last 15 is for "sharing" time. I myself have had some fun!!!

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2011-09-12T10:35:00.001-04:00

Zane has a big heart.

Dinner Tonight

2011-08-17T21:52:00.001-04:00

"Mom, I am really not too happy about this dinner" (He never really is lately)

"no I am serious... Don't make me laugh!!!"

"Mom stop!! I'm gonna let the cat eat my dinner!"

I love this kid. Even when he won't eat anything but ice cream.

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Haircut

2011-08-17T21:45:00.001-04:00

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Bowling & Blogging

2011-08-15T22:33:00.001-04:00

The Caped Bowler.

Dinner... Stuffed squash with garlicky spinach and white beans.

Boy oh boy... Now that i can blog right from my phone you will probably know more than you want!!

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BFFs

2011-08-15T20:33:00.001-04:00

Best Buds.
After not seeing each other for awhile... these two have been hard to separate.

Sleepover dessert. Inhaled within 30 seconds.

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Interesting Health Video

2011-06-20T22:50:00.002-04:00

Just wanted to quickly share an interesting health video that I found through Kris Carr (a vibrant cancer survivor and I have enjoyed many of her books so far and am eager to learn more from her! still have not seen her newest book yet!!)

He is the coolest kid I know.

2011-06-14T11:47:00.001-04:00

Such a Happy Birthday It Was

2011-06-01T14:06:00.001-04:00

It was such a very happy birthday for me this year!! So many folks know me by heart as you can see by the picture below!! It was filled with lots of family time, lots of swimming, and lots of cookouts!! Awesome!

Things I am simply loving lately...

2011-05-24T11:18:00.011-04:00

Their are a few things that I am just simply loving lately and I thought I would share.

1) Finding multiple nests in our yard while doing massive yard work lately.

2) Sewing again.

3) Planning many bowling trips this summer with Zane and my new rad bowling shoes!

4) Watching Daddy and Zane work intently on Zane's new sandbox.

5) Watching Zane take his first swim lessons and getting so much more comfortable in the water.

(That is Ms. Ashlyn... he LOVES her.)

6) Reading this book cover to cover and soaking in the inspiration and knowledge. Thank you Ben and Rachael.

7) My wonderful thrift store find! Dansko sandals, probably never worn, for $5!

The start of summer perfection.

Zane's First Solo Rides

2011-05-09T14:26:00.003-04:00

Zane has had two solo rides on Maggie so far. He is so good, so still and so respectful. It is so awesome and adorable. Check out the videos. I am constantly surprised and proud of how tall he sits with such a straight back. He looks rather comfortable and Mimi is such a rock star trotting along side him ensuring his safety!!!

New Bike

2011-05-03T12:24:00.005-04:00

Zane got a new bike AND a new helmet! He is getting so big and helpful. We put training wheels on it and he is very slow and careful. He is right now mostly into his balence bike which he whirs around like a crazy superhero on. This one is more for the slow, stolling superhero... for now.

The first ride was not so easy, although I really think the fall is pretty graceful. The two yappy dogs from next door came charging out of the gate from next door (you can hear them in the background) and just barked like crazy at him. I probably would have fallen off too.

Once we got him out of the driveway and away from the yapper dogs he was on his way... carefully.

And as I trecked behind them and in front of them taking videos and pictures I started to notice some other things that I wanted pictures of throughout our neighborhood. Our neighborhood has some flare and apparently some interesting ingenuity!

Check out the golf club fence... they buried the club end of the club in the ground and they are all strung together. So many golf clubs!! So very weird!

A pieced together carpeted driveway... very lush indeed!

And we love our icecream guys either on bike cart or push cart. I do love hearing their simple jingling bells throughout the day (fyi...I am not being sarcastic on this one).

Acrobats with Maya & Sara

2011-04-04T19:47:00.002-04:00

Watermelon Popcicles

2011-03-28T13:22:00.001-04:00

Lakes Park Day with Friends!

2011-03-28T13:12:00.003-04:00

Last Friday we had a great day up at Lakes Park with Tiffany, Brianna and Sierra! We road the train, had a picnic, played on the playground, smelled the flowers (they have a farmer's market on Fridays and lately Zane is all about the farmer's markets!!), played in the spray park, and snuggled with our best friends!

Mom's (Mimi's) Birthday

2011-03-17T11:32:00.003-04:00

We went to the VERY classy and wonderful Quality Inn by our house which has the best karaoke and people watching in all of Collier County. By the pictures you would think it is Papa's birthday! Lately, Zane treats everyday like it is Papa's birthday. He is very into and loving dearly his Papa. Who wouldn't, right?

So Papa loves to get Zane involved in any way he can. I believe this is his GENIOUS way of getting Zane used to the "stage." Genious, I tell you.

They are ok. I am breathing again.

2011-03-16T09:47:00.002-04:00

Our friends Brian and Aya are living in Tokyo and have let us know they are ok.
I have taken some good deep breaths since learning this news.

But they are shopping in empty grocery stores...

Check out their blog here: http://tok-yall.blogspot.com/

My Sweet Boy

2011-03-03T15:15:00.000-05:00

It's Magik

2011-03-02T13:54:00.000-05:00

A day at home with Zane

2011-03-02T12:57:00.003-05:00

Sometimes you just have to:
- wake up slow
- enjoy your tea
- take showers late
- hang in your jammies
- eat blueberries
- needle felt and play with clay
- bake bread
- then eat it with honey.

(The big clumpy roll is "robot bread.")

Garage Therapy

2011-02-22T12:41:00.005-05:00

We have been working A LOT on our house lately. We are going through some perging and therapy I would say. It has felt good. We have gotten rid of so much that we are going to take part in a community yard sale with. We have cleaned and organized even more. Our garage has always been a source of well... MESS and UNORGANIZATION!!!! So, we worked our entire 3 day weekend on the garage. We have it about a third done (including repainting it all white).

Zane hates loud saws (or just loud noises for that matter) so Paul found some old headphones that we have in the yard sale pile and he was happier.

Zane painted with his easel and he helped me paint the wall!

More of the process to come and some pics of it all painted!

Valentine's Day Seranade

2011-02-17T15:29:00.001-05:00

One of Paul's Old Baseball Jerseys

2011-02-17T15:02:00.001-05:00

Clean Love

2011-01-19T11:58:00.003-05:00

Friday I had a PET Scan and all is reading clean. "No definite evidence... blah, blah, blah..."

I go this Friday to Moffitt for my first follow-up. My "90 days" appointment. I expect it to sort of be a waste of time seeing as how my scan is clean and I am recovering well. Whatever though. I feel like I owe them to check in!! Ha! This is all good...

Zane and I went on a little walk yesterday at a local park after I picked him up from school. I always have a hard time with him on walks which bums me out because not too long into it he starts complaining that it is taking too long, his legs hurt... when are we gonna be done? BUT... when Aunt Rachael and Uncle Ben were here for Christmas he would go on hour and a half long "hikes" near my Mom's house and never ONCE did he whine about it. So, I asked him about this on our walk. And he simply answered me... "Aunt Rachael and Uncle Ben are more fun." Then he saw the "crush" on my face and quickly said... "Well, you are fun... but they are more fun." Well, I get it. I just don't like it. I just wanna be able to take a stroll with the kid. I guess for now I have to find ways to be more fun, although I think it is practically impossible when comparing!

But on the super sweet side... yesterday we got a package from Nana in California. She knitted him two beautiful sweaters that look awesome on him. Pictures to come. But in the package were some Valentine cards in a box and in there was a small sheet of really simple red heart stickers. He has designated these stickers his "kissing hand" stickers. If you know the book... you get it. So last night he crawled into bed with me with this sheet of stickers and told me he wanted to wear a kissing hand sticker to bed... was this ok? Of course! So, he looked at the sheet of stickers (all the same red hearts!) and picked one specific one and pointed to it saying, "That one. That one right there. Put all your love into it and then I will wear it."

I put all my love into it.

My Little Niece-Dog

2011-01-12T09:20:00.002-05:00

Look at my little "niece-dog", Kadin, today.

My brother, who lives in Silver Lake, NH sent this to me just a few minutes ago.

I think Kadin needs a vacation to Florida to see (and warm up) with her Auntie!!!

Maybe I should think about a future knitting project for her. Burrrr.....

The Simple Things

2011-01-04T08:11:00.001-05:00

Zane this morning: "Mommy, these eggies are so good I just can't believe my life. I just can't believe it."

Santa 2010

2010-12-21T18:48:00.002-05:00

Zane insisted that we go to the mall (ahhhh!!!!) and see Santa. He really had to ask him a question. He really needed to know how he got his reindeer to fly (not sure what he is planning). The answer he got was pixie dust but I know that a lot more chatting went on after this picture and I have no idea what about. Mostly because after he got off of Santa's lap he came to me and was about to cry because he forgot to tell him what he wants for Christmas. What are they planning??

He was so nervous to to this on his own. He really wanted one of us to sit there with him but we convinced him that was not an option. So he said he would be brave. And he was.

He also had to where some funky green glasses of course and his Batman shirt was a must for seeing Santa since his Batman Pjs were dirty.

Merry Christmas, Loves.

Love's Huge Expanse

2010-12-06T20:12:00.002-05:00

This morning Zane and I were having breakfast before I took him to school. I looked at him and said, "Zane, I love you."

He said, "I love you to Mommy."

Then he said, "You know what, Mommy? I love those doctors too. The ones that made you better and let you come home!"

I said, "You know what Zane? I love those doctors too."

I am so happy to be home with this kid.

This weekend at Borders

2010-12-01T16:00:00.000-05:00

this is absolutly amazing. maybe try and do a little christmas shopping there this weekend??? amazing. $15 toward a school just for buying a latte. paul told me about this and i told him i did not believe him. then he sent me this link...

http://tweentribune.com/borders

Bye-Bye to External Tubing

2010-11-18T11:16:00.003-05:00

I am getting the catheter out today. I can not express how anxious I am to be rid of this.
It has served me well. But... bye-bye.

They do it only under local. Just the lidocaine shots in my chest. Then they yank the thing out.
I have to say... I am nervous. But it will (hopefully) be quick and go without a hitch.
My luck with these things has not shown in my favor in the past. Today WILL be different.

My appt. on Tuesday... my P.A., Aaron, said that he sees absolutly NO REASONS they will not give me the green light at my appt. on Friday that I can go home. My brother comes in tonight and stays till Sunday. So, Mom and I plan on heading straight for Naples after we drop him off on Sunday morning for his 11am flight.

Homeward bound...

Me Now

2010-11-10T17:11:00.004-05:00

For any left who still want to know the address to the apartment...

10420 N. McKinley Dr., Unit 8101
Tampa, FL 33612

I don't know how much longer I will be here. BUT the big news is that I have engrafted which means that my lab numbers are showing that my cells are starting to reproduce on their own. This means that the transplant has taken hold!

I have not posted in quite awhile even though I really wanted to keep this up through all this, I have not felt inspired to sit down at my computer much at all. I have been in and out of the hospital for various reasons but I have now been in the apartment for quite awhile. Although being in and out of the hospital was a hassle... I would not have changed it. I do think they let me out a tad early but mentally getting out of there was a GOOD thing. Even if it may have been a short break in between visits... it helped. I have gotten blood, platelets and fluid infusions along the way.

They are now giving me two days in between clinic visits since my lab work is looking so good. I have a clinic appointment tomorrow but on Friday I have an appointment with my doctor which will decide on that day if I get to go HOME and be home for Thanksgiving. No matter what I will have to come back on the 29th for a PET Scan (my +30 day out of transplant scan) but I would rather head back up here and get a little taste for my home and my boys.

You can't imagine how deeply I miss being home and all that home is. I am so homesick. I have never fully experienced this feeling. Not to this level.

Paul and Zane came up this weekend and it was the best feeling ever. They arrived on Thursday and left on Sunday and I just could not drink up enough of them.

I am tired pretty much all the time and I still get random waves of nausea. This recovery is not at all like the last chemo treatments where every day I could really internally see day to day improvements. It is not that I am not improving... it is just not quite at the pace I am used to. But really... who should ever be "used" to that?

I have gotten cards and gifts and so many wonderful "love" packages. Thank you to all of you. I have not had the energy to personally thank you but know that I am soaking it up and love it and you!

This week I have a big visit to look forward to! My brother is coming to visit! He is arriving on Thursday and not leaving until Sunday! Yeah!! He will get to come to Moffitt with me and hear whether or not I get to go home and leave this too quiet and boring life here. We will hang for the weekend and maybe... just maybe my Mom and I will be heading home on Sunday after Ben leaves. Oh please!!!

OH!! and also know that maybe sending something to this apartment is not a good idea at this point. I can not forward my mail from here so when I leave I leave whatever mail comes after my departure. You can always send it to my home though. If you don't know that address than I can personally send you that one!

Love to all.

Day +7

2010-11-04T11:17:00.006-04:00

Back to the clinic today. We were here for about six hours yesterday.
Today I am getting fluids as well as some more platlets. They are back down to 10. They are also starting me on my neupogen shots today which is sort of a love/hate relationship. They make my bones hurt but that stuff is going to kick in and start helping my produce cells which... In turn will make me feel better. So GO neupogen!

This morning I woke up feeling not so bad. Was doing well keeping all my meds down, but as we went to leave the apartment I started getting incredibly light headed. Then as we got to the car I ended up yacking all over the parking lot.

So we are told... This is all part of it. Yuck.

Today Paul and Z are coming. Zane will stay one night and then he and my Mom will head back to Naples. Paul will stay till Sunday which will be awesome. We need some good quiet time together. Probably we will do nothing to exciting given how I feel and also, whenever I walk out of that apartment to go ANYWHERE I have to wear a pretty darn uncomfortable mask.

So I have done this whole post on my Mom's I-pad and this is just too cool. One of these babies could make blogging a more frequent thing. That would be cool. I think I will put one of these babies on my wish list and just dream. Heeeee!

Mom has had quite a job to do taking care of me. She is totally in charge of all my medications which I might add is a gigantic ziplock bag full! She made us a wonderful dinner last night that really hit the spot for me. She broiled some salmon and black beans and rice. So good and everything that I had felt like I was missing in my diet... Especially protein.

The biggest problem now is the mucositis or the break down of your mouth, esophogus and g.I. Tract. This is all side effects from chemo drugs. I am lucky that I don't have any in my mouth but I have a large soar or many of them in my esophogus. This makes anything really hard too swallow. Basically to eat, I have to force myself and every bite right now results in sharp pain. They have given me some pain meds to help which they do help but still, when I swallow anything it is still there. Ughhh.

Excited to hug my boys tonight that's for sure.

Day + i don't remember anymore

2010-11-02T11:47:00.003-04:00

I was released from the hospital on Friday and then re-admitted less than 24 hours later. I could not keep anything in my stomach including the pills that I need. I would just throw it all up.

BUT... Friday night we were able to celebrate Zane's birthday together as a family. Paul and Zane spent the night Friday and then went back home on Saturday. It was nice to be able to not be in the hospital around Zane for a bit. Even though I felt incredibly rotten.

So, I have been back in the hospital and it has been a baby step process for me to transition from IV antibiotics to oral antibiotics. Over the last couple of days we just try one at a time. My last one to try oral again was this morning. So far so good although I feel a bit nauseous.

My mucositis has kicked in big time although not actual soars (which is huge)! But my mouth constantly feels like a really dry port-o-let. No matter what I do, drink, eat or brush it always stays the same. This dry and yuck feeling flows all the way down to my stomach. My stomach can best be described as feeling like I have a small fire in there.

It seems to be a constant battle with my brain and stomach lately. This will last a while longer until my counts go up.

Today my platelets dropped to 10 so I had to have an infusion of blood platelets only. The other day I had had a blood transfusion of red blood cells. From what I hear, these will not be the only ones I will need till this is over.

So, we are heading back to the apartment today since I have kept all my meds down. This is a confusing decision really. A big part of me is nervous cause it didn't work out very well this last time. But on the other hand it will be nice to just veg out and not have someone taking my vitals every 4 hours.

Mom has been great!! A lot of pressure is on her to take care of me once at the apartment. It is crazy but she is not allowed to leave me. Which means that, for example, if we need some groceries she has to run and get them during my daily clinic hours or I have to go with her. Yes, they will let me go with her but as long as I wear a duck-bill mask. I have to wear one of those anytime I leave the hospital or apartment. She has to make sure the place is constantly wiped down. I have to have my own bathroom that no one else can use. Cooking meals is a lot of pressure when you are feeding someone with an immuno-suppressed diet. She also has to be always at the ready with a "clamp" of sorts JUST IN CASE something should happen or snag my catheter lines. Whew!

So between the two of us I think we are a bowl of bubbling nerves.
But we are doing it.

Days -4, -3, -2, and -1

2010-10-27T16:06:00.005-04:00

This is what the countdown is like for a stem cell patient. You start out in negative numbers from the time you are admitted and the amount of negative numbers depends on the amount of days the chemo in fusions are set for. For me this was -6 days.

It is day -6 now which means that tomorrow is day "0" for me or my new "birthday"! I will have these cells put back into my body tomorrow (who knows what time!) So, tomorrow is the day that I actually get those stem cells back and they have to get to workin' really hard for me.

On the day of stem cell "harvest" they were able to collect mine in just one day. Their goal is to gather between 2 million and 5 million. Well in that six or seven house span with me hooked up to the machine, they were able to gather 4.7 million!! This was a good day for us.

The Harvest (Stem Cell Collector Machine!)
You can see some blood starting to move through the tubes.

In and Out of my Neo-Star Catheter Line

In and out of the tubes.

The beginning of my little stem cell babies! Much more to go!

Hangin' with the machine (cause I can not do anything otherwise!) I really only got up ONCE in those 6 hours to pee!!! Now if you know me well, that never happens!

Mom waiting and working.

Stem Cell Babies. These were it. You don't know when you leave if you have gathered them all. If I had not I would have had to come back the whole next day and do it all over again to add to them. SO happy I did not have to do that!!

Admitted to the hospital (the next morning when Mom and Zane came to visit)
Checking out my pretty lame view from the window.

Zane testing out some equipment in my room.

Zane jumpin' on the guest bed and Mom clearly needing some exercise. :)

One thing I decided to get for Zane during my trip away for him to have is his very own camera. Just so he can take some pictures of anything he wants while I am not with him or home. This started at a Auntie Lala camera that he sent but we kept having difficulty getting all the parts together and I still felt like it had too many buttons for his little fingers. So I ordered this one and he loves it. It has rubber padding all over it too so it can take a fall.

Cheese!!!

Address

2010-10-25T14:39:00.002-04:00

Many of you want to know an address to send things to. Please keep in mind that I can not have any flowers or plants or anything with moss attached, etc. sent to me. Nothing alive as well as no fake plants. Also, you can not bake anything and send it.

These precautions are because of germs and bacteria that are at this point life threatening to me.

So, the address is:

Moffitt Cancer Center
12902 Magnolia Drive
Tampa, FL 33612
Room 4731 - 4 West
Attn: Danielle Holimon

Day -6 and Day -5

2010-10-23T10:23:00.003-04:00

Checked in to the hospital yesterday, but late. My bed was not ready for me till about 4:30pm so we got here around 5pm. It was all very weird. It was like "come on it and get set up, but we are not going to show you around or anything." So it was uncomfortable. We had to ask our way through it. Supposedly this morning they told us that is not how it should have been. Not sure I totally believe them yet. I didn't start my chemo till about 11pm last night for a 3 hour infusion of Carmustine (BCNU) (the "B' of my regimen called "BEAM").

I was awake through most of it and fell asleep at the end. Paul is staying with me last night and tonight. I got to see my Zane-Man last night!!! He is just the most adorable thing in the world to me!!! It was so good to hug him, kiss him, touch his hair and look into his eyes. Looking into that kid's eyes makes my goals get even more focused.

Checking in last night was hard. It was hard to unload the car and then walk into a building and know that you will not step back out for 3 weeks! Paul was helping me move in and as soon as I stepped foot in the lobby I had to turn around and walk right back out. It was hard to breathe and I started crying which I have surprisingly been staying pretty calm through the rest of this last week, but walking in here for this was a different story. Pretty understandable, I know. I finally got my ass through those doors and then was just overwhelmed, frustrated and weepy through the check-in and settling into our room. I just didn't know what to do. It was weird. They showed us to our room and pretty much left us there for 30 - 40 minutes without anyone coming in.

Then, "POW!!!" met with:
RN
Physician's Assistant
Oncologist on call
Oncology Nurse
Pharmacist
Was wheeled down for a in depth chest x-ray.

But the first night was ok. I was up late but once I slept I slept till about 8am. Pretty good for a hospital. Of course I had to pee about 3 times but I never count that.

Zane and Mom are about to come up here for a visit. Then they are heading back to Naples. She will come back on Sunday night to spend the week with me and Paul will be heading back to Naples Sunday night.

This morning I am getting an infusion of Cytarabine ("A" of the BEAM regimen) and the Etoposide ("E") over a three hour total infusion. Then this evening I will get that again. I will repeat this dose twice a day through Tuesday.

Other little side notes:
- They give me a new toothbrush every two days that is super soft bristles. This is do that my mouth does not get scratched up because Mucocytis is really common with this regimen. (mouth sores, infections, sores in your esophagus, etc.)
-They give me big bottles of saline rinse for my mouth to swish with every time I am in the bathroom to keep my mouth clean for the same reasons
-I have to pee in a plastic "hat" every single time. They measure my output so they know that the chemo is flushing out of my system and my bladder is handling it.
- If I poo, (yes, I know... but it is part of it) I have to put rubber gloves on to wipe because of my immune system will be so low I can not deal with possible bacteria from that.
- They do my vitals every 4 hours (day and night) (blood pressure, temp, oxygen levels, listen to my chest)

This is just the beginning. This will only get more yucky FIRST then of course... it will get better. In the meantime, this sucks. I have awesome support though and I love you all so very much.

Pain Management

2010-10-19T09:34:00.002-04:00

Yesterday I went in for the catheter line placement. It turned into a long ass day for sure. My appt. was at 10:30am but the Physician's Assistant who places the lines was running late because the other PA called in sick. SO.... I ended up not in my surgery until 1:30pm!!!! Waiting is not where I am strongest for sure. I totally understand the whole being sick thing and I sure appreciate that someone would not come in sick but man, they should have called me too and not had me come in till 2 hours later or something!

Then we had some issues with deciding on placement. I still have my port on my right side which I guess is the side that is best for a catheter line because the line does not have to travel as far around my thyroid and such (I am not totally clear on the path that this catheter takes... I sort of tuned out sometimes). Also, I have had radiation to my left side so they felt that some scar tissue may get in the way of proper placement. They would not know till they got me on the table and under an ultrasound. So it was possible that during the surgery they would have to stop and call my doctor and then decide to take my port out. This was a shock and a panic for me because I use my port quite a bit so that they do not have to draw blood from my finicky veins in my arms and also, some of you may remember, but getting this port in and healing from that was quite a project for me.

So on to the surgery we went and I was getting what they generally call these "twilight" drugs. Well, that can mean many different things but the end result of that is that I was AWAKE THE WHOLE TIME and FEELING IT!!! They used lidocaine (sp?) to numb up the area but when they were putting the line in it really really hurt like crazy. It is absolutely totally F'd up to be awake for me during things like this. I was being pumped full of drugs the whole time but for some reason they were not making me fall asleep. F'D UP!!!

So, in the end they placed the catheter in my left side and did not have to remove the port. But, holy crap do I hurt. This thing is painful right now to say the least!

So, then I was all pumped up with drugs and HUNGRY!! I was not able to eat or drink the whole time because of the procedure. We quickly ate something in the cafeteria and then on to our "catheter line care training" and another two neopogen shots. We did not leave Moffitt till about 5:30pm and we were exhausted!

Mom has been taking care of me wonderfully. We got back to the hotel and then had to run out and get us some groceries and get my antibiotic prescription filled. She also picked up some Indian food which was so yummy and good! We needed some good food after that day!

Sleeping was difficult because I can not really move or even swallow without this thing hurting like crazy. I am managing on a lot of pain meds which really don't always make me feel good either in other ways. I would wake up though like clock-work every 4 hours which is exactly when I could take more pain meds.

Now today we are off soon to go back to Moffitt. They put all of their stem cell transplant patients through a 1.5 hour psych appointment. That should be lots of fun today. Then at 5pm... two more shots of the neupogen.

Tomorrow is the day of "harvest."

***Many of you are wanting the address to Moffitt for when I am in there which I will be looking up for you soon. Please know though that when I am in the hospital I can not receive any flowers or plants at all. They will not even let them on the floor. It is because I will not have an immune system at all and could not battle the bacteria that travels on plants and flowers. Also, I will be on an immuno-suppressed diet which I will explain more later but it may be hard to send me food and definitly nothing that is homemade. I know, such a bummer.

Love Me Two Times

2010-10-17T21:26:00.004-04:00

So it is sad the weekend is over. It was fun to start into this by hanging out with friends in a familiar place. Going to Sara and Sam's house is like going to a second home and so it has not all felt "real" until tonight. Well, maybe I should say when I had to stand in their driveway and wave goodbye to Paul and Zane as they left to return to Naples.

Friday was a doctor's appointment but really all it was for was for me to sign about 20 pages of consent forms. They had given me copies previously to read on my own which I did... mostly. Really it is a bunch of stuff that you really don't want to know. All of the terrible terrible things that could go wrong and all of the awful things that these drugs can cause... don't want to hear it! Because really, what am I going to do? Change my mind? So I inked my signature on those babies really quickly and handed them back.

Saturday we woke up slow and then me, Paul and Sara took Maya and Zane to the new Glazer Children's Museum in downtown Tampa. It was pretty cool but REALLY super packed. This is really the kind of place that Sara and I are used to doing with our kids during the week because it is never as busy but when we all get together we end up doing these things on a weekend and boy oh boy was it crazy crowded with totally hyped up kids! It was good to take them there and have an adventure but it was a overly stimulating experience.

Then we loaded the kids up in the van and we all trekked to Moffitt for my first Neupogen shot. Sara hung out with Maya and Zane in this cool garden that they have there while Paul and I went up to get my shot. The shot turned into two shots. Wonderful stuff. I knew that I was getting double the amount of Neupogen that I was normally prescribed after my previous chemo BUT I did not realize that that actually meant that I get two shots of it. They can not actually fit the amount of Nuopogen that I need into one syringe. THEN they tried to tell me that they needed me to sit there for an hour to make sure that I did not have any reactions to the drug which really pissed me off. First of all, they did not tell me this in my schedule... Second of all, because of that we did not plan for that. Now we had two very tired and worn out kids hanging out outside waiting for us and quite frankly I was so darn worn out that I could not imagine mustering the patience to sit there. So I told her that we had two kids waiting for us and that that was not possible. I think she saw the exhaustion in my eyes and so knowing also that I have successfully had this drug before, she let me go after 15 minutes. Whew! I kind of felt bad but I really did not want to sit there for that, especially knowing full well that I was not allergic! At this point in my lifetime I have probably had 30 to 40 of these shots!

So today we woke slowly and hung out. I did wake up with the beginning of the bone pain that the drug causes. I get it quite a lot in my hips. Also my neck and even my cheek bones. It also give me quick a kicker of a headache. So Zane and Paul took off to get back to Naples and Sara drove me to my Moffitt appointment for my next shot (which are at 5pm each day). Then we met my Mom at the hotel we are staying at until I get admitted to the hospital this coming Friday. The three of us went out to a cozy Vietnamese dinner and now Mom and I are crashing out. So tired.

Tomorrow I get to wake up and not eat or have a drop of water. I will arrive at Moffitt at 10:30 and have the catheter line put in. They give me "twilight" sedation. Then we will learn how to care for the catheter, come back to the hotel and rest off the sedation and then back to Moffitt again for a 5pm Nuopogen shot.

I miss my boys tremendously already. Tomorrow we have a potential skype date and that will be good.

Love to all of you out there and love those kind words, thoughts and focus. This ball is rolling forward and it really didn't sink in till today. It was a hard evening.

Here is a picture I took with my phone at the museum. They had a pretend veterinarian's office and Zane really though it was cool. Eventually he put on a lab coat and took this little kitty's vitals. It was just so damn cute!!!!

Ready, Set, GO!!

2010-10-15T06:56:00.004-04:00

We spent last night at my Grandad's house having a wonderful dinner and a quick swim. My last night at home with everyone for awhile. I am glad we got to chill and relax a bit. I was really mostly packed at that point yesterday so it felt good to be able to do that without worrying anymore about packing!

We are off today for the first day of a long adventure. Paul and I are packing up the car while Zane still snoozes away. We are off so early because we need to make it to Clearwater and drop Zane off with Sara and Sam before my doctor's appt. today at Moffitt at 2pm. Zane is SO EXCITED to see Maya and Oliver!!!

Paul and I will be spending quite a bit of time in the car today. Not really my favorite. Bleck!

Work-Up & Stem Cell Harvest

2010-10-07T10:55:00.005-04:00

Wow! Boy is an update REALLY needed. I am so sorry I have been off the planet for a while.
I finished up my 2nd I.C.E. chemo treatment and spent quite some time recovering. This treatment was for sure a bit tougher than the last. Cumulative effect I guess. I spent a good week pretty on and off nauseous even with medication, very achy and REALLY exhausted. I would get up and start a load of laundry, for example, then have to lay down for an hour and so on. Yes, I still did things like laundry because really, that made me feel good to get SOMETHING done! Even the little things!

So after that it has been progressively better each day. Still enormously tired quite often but the rest of the side effects have gotten under control. All except for the "chemo brain" which is really quite something for me this time around. I forget things VERY fast. I even left the other day and went through my normal routine of leaving the house. Closed up Dylan's crate... only to find her not actually IN the crate when I got home. What??!!!?? Fun stuff.

So now it has been a whirlwind of Moffitt Cancer Center Planning. I don't really know what I have or have not included but yes, I am getting a STEM CELL TRANSPLANT. These two chemo treatments that I have received in Naples has been in preparation for the AUTOLOGOUS STEM CELL TRANSPLANT (my own stem cells are being used as opposed to using a donor). I have done those and have been re-scanned last Friday and that scan has shown TOTALLY CLEAR!!! This was expected in some ways because originally only one lymph node was showing up on my scans and that is the one that they have removed during the biopsy surgery that I had which re-diagnosed me. But this good stuff to go into all of this with... this is not normally the case for people in my position.

My Mom and I went up on the 4th and 5th (this last Monday and Tuesday) and spent two full days at Moffitt doing my "work-up." What do they do in a work-up for this transplant?
- Pulmonary Function Test (which I might add included a blood draw directly from and ARTERY instead of a vein!!! This was not flippin' fun at all! It was a surprise to me. I have done PLENTY of these pulmonary tests and never did they include this step. The reason they do it is so they can test the oxygen levels in your system. So, they stuck a big needle in the underside of my wrist to do the draw. It hurt and burned like hell! I think they went through a million nerves before getting to that damn artery!)
- Chest X-Ray
- EKG
- MUGA Scan (see the link for more description but in summery it is when they do a blood draw... this time through my port... then they mix it with what they call a "tracer" and let it sit for 15 minutes. Then they re-inject you with your blood mixed with this "tracer" and then put you under a machine with basically a plate that looks like an x-ray plate. This machine then watches the functioning of your heart for the next 10 minutes. That is my basic, some-what educated overview.)
- MEGA Labs (Oh, this part was fun. When they say "mega" it means MEGA. They filled 16 vials of blood through my port and then had to fill one directly through my vein which ended up requiring the lady who did it to stick me twice before she got it!)
- Meet with a Social Worker (They talk to you about everything! How you feel, how your family feels, financial situation, lodging and some more in between! They cover everything and I still can not believe their job range!)
THE ABOVE WAS ALL IN THE FIRST DAY. YES, ALL IN ONE DAY!
Then,
- Meet with your Physicians Assistant (Go over everything! Brief physical exam. Ask lots of questions)
- Meet with your RN (She ended up canceling with us because of two nurses being out and she was covering but came out to say hello and gave me about 15 pages of release forms to review/read till the next time. Basically a bunch of forms to sign you flippin' life away!)
- Take a 2 HOUR class on Autologous Stem Cell Transplants. YES a 2 hour class basically reviewing all of the things that they previously sent me home with a one hundred page binder to read and review.

Then we came home. We stayed in a hotel in Tampa during this stay and it was great to have my Mom along. She is going to be my primary "caregiver" while I am in Tampa along with Paul. They have split the week up between the two which seems like it will work well but we have to be open to changes all the time! It changes everyday (part of why this post has been so darn hard to sit down and write!).

Now all of my test and labs looked good according to all the folks at Moffitt that read them. This is awesome because anything could tip the scale as to whether I can even GET this transplant. So far I am good and I will stay that way! I am in.

Now, the big games begin starting on Oct. 15th!
Schedule...
STEM CELL HARVEST (They "take" or "collect" my stem cells from me)
Oct. 15th (Friday): Drive to Clearwater with Paul and Zane. Hopefully Zane will be game to stay with Sara, Sam, Maya and Oliver. I don't see this being too big of a push since we are going to stick him in the car for three hours in the morning. I think he will be happy to get some vigorous Maya play time! Paul and I will then drive from Clearwater to Tampa for a 2:00 appt with my doctor, Dr. Lia Perez. (Click on link if you want to see her resume)

Stay weekend with Sara and Sam but go in for appts over the weekend.

Oct. 16th (Sat.): 5pm Neupogen shot (They give you this shot to boost your cell production. After about 24hrs following this shot you experience quite a bit of bone pain. The production of your cells actually makes your bones swell. Strong pain meds will be used!)

Sunday night go to hotel to meet up with Mom who will be there the remainder of the collection time with me.

Oct. 17th (Sun.): 5pm Neupogen shot

Oct. 18th (Mon.): Surgical procedure of putting in my Neo-Star double lumen catheter. This will be used for my stem cell collection, administration of more chemo, medication, blood draws and whatever they decide! I am not at all excited about having this thing hang out of me. I still have my double port from the first round of chemo but they want more access and they say that the wide tube access that the catheter provides will not break down my cells when they collect them.
Also on this day, back at 5pm for a Neupogen shot.

Oct. 19th (Tues.): Meet with the Psychologist (they do this with everyone as part of their work-up procedure but they could not fit it in when I was just there for the 2 day marathon work-up.)
Back again for a 5pm Neupogen shot (probably by now I will be in quite a bit of pain. 4 days in a row of double dose Neupogen shots and a new catheter line placement hanging out of my chest trying to heal! Let's just say I imagine myself not being so chatty and comfy.

Oct. 20th (Wed.): COLLECTION DAY!!!! (Apheresis) Check out link for more details.
This is when they "collect" my stem cells. I go in and get hooked up to a machine that I have been told looks like a big washing machine. This machine takes my blood and separates all the cells into layers, removes my stem cells, and then the rest of the cells/blood gets put back into me. They then store those collected stem cells in the freezer (they add DMSO to them for preservation) for me when it comes time for transplant. I will be sitting still and not able to move for 6-8 hours. Yes, not able to move... this means that they tell me to not drink too much the night before and the day of and that they will have a bed pan for me if need be. I see that possibility being very high... yeah for me.
Then 5pm Neupogen shot! (Gotta boost up what they just took from me, I guess)

Oct. 21st: Possible 2nd day of collection in case they do not get enough the first day. Possibility of this being the case is rather high.
5pm Neupogen shot!

This concludes the chapter of this story entitled Stem Cell Harvest (Collection) Education.

I know, so many more questions, I am sure. Really this has been a whirlwind. Everyday something is added and changed and new to the schedule and plan. We just keep trying really hard to keep up and go with the flow.

Next chapter: Stem Cell Transplant
Scheduled admittance to the hospital (just got the call today!) Oct. 22nd (that next Friday). So, I will not even be coming home. I will go right from the hotel into the hospital. More details on what I know so far on that next time. This has been enough (really, too much) to take in. Imagine what my head does!

P.S. You can use this post to comment with questions if you have them. Please know that I will try and keep you updated and somewhat educated on the Transplant part later. But, if you have some questions on this stuff now, post them and I will do my best.

A Weekend In August

2010-09-21T15:11:00.008-04:00

A weekend with the James Family back in August. They came right after my bone marrow biopsy and spent a wonderful weekend hanging out. Sara and I even ducked out for a trip to the knitting shop and dining for lunch at Sushi-Thai. THEN the boys got to duck out for a round of golf. All photos were taken by Sara this weekend (she is so much better than me... just one more thing to learn from a good friend!).

Breakfast Kisses.

The Three Painters.

Boys and Kitties.

So Grown Up.

A Girl and Her Dog.

Family Portraits.

Our Fish.

Our Ylang-Ylang.

Little Tiny Things at the Sushi Place.

In Love with my Beautiful Baskets.

Paul's Birthday

2010-09-16T15:50:00.005-04:00

Happy Birthday Paul!

Sara came down with Maya the weekend after my 1st Chemo. She came prepared to make yummy grilled turkey and avocado sandwiches and brough some delicious brownies! Zane was in LOVE with the brownies!!

Snuggly living room bed to watch Mary Poppins.

Tall stories by Danielle about avocado guacamole making machines! Oh my!

Best Friends.

Family photo (when Sara and I cry... every time.) Also, she had a really shitty ride home this time in lots of rain and direction confusion. I am so happy they made it safe and sound.

Paul's Great-Grandmother's Afghans

2010-09-16T14:54:00.003-04:00

This one is for you Razie!!!

I have been meaning to get these pictures done and off to you. I know... I have had a lot to do but the real push for me is that I made little Cougar a toy that I want to send too!

So, enjoy the pics. Yes, their is two different light pink & purple ones.

Pick as many as you want. Pick them all if you would like. Tell me your desires.

(I wish my picture quality was better :(

Swimming: Clearwater Maya Birthday Weekend

2010-09-16T14:37:00.004-04:00

Notice the sleeping Zane in the lawn chair!

Sleepy Boy. (photo by Sara.)

(photo by Sara)

May: Maya's Birthday

2010-09-16T14:28:00.005-04:00

The Birthday Girl! Happy 4 Years Old!

Happy Cupcake Daddy!

Zane is a happy boy when cupcakes are around!

Cute Oliver.

Oliver & Raina (one of my favorite pics)

Cupcake Face.

Old Friends.

Raina.

Sagen.

Happy Mommy.

Angie.

My Day (Start of I.C.E Treatment #2)

2010-09-14T18:42:00.007-04:00

My chemo sky.

One of I think 5 projects going right now... my first shawl.

Lovely soft cotton hat made by Sara.

My naked head.

The gloves are hung by the shelf with care.

This Is Us

2010-09-14T18:35:00.002-04:00

... in our garage last night.

This is our super hero this morning eating a Twizzler dessert after breakfast.

Dessert after breakfast is a good thing for one's life.

Hair Fallin'

2010-09-08T15:54:00.002-04:00

It is truly crazy. It all started the day before yesterday with... ehemmmm... the hair "down" there (sorry all, I am sharing...) then yesterday it started with the hair on my head a little. Now, today, it is falling like mad. My head itches and is tender. Really, I don't mind the whole "loosing my hair and being bald" issue. BUT it is REALLY annoying to be bald. I remember. It is a LOT of maintenance and it is itchy and it keeps growing enough to just drive you crazy! That point where it is just poking through on your head (which is like every 3 days!) feels awful to me. Really, I do not understand how you baldies love it. I hate it. It is not how it looks, it is how it feels.

So on we go.

Everyone wants to know how I feel. I feel better than I expected to at this point. Sure I get wiped out tired and my patience is a little thin, I can't go poo and my hair is falling out like rain, but I have been eating, functioning, working and hanging with friends and family. I have SO MUCH help.

Zane is on a good schedule so far. He hangs with Nona on Monday and Tuesday but sleeps at home and then it is Mimi and Papa's turn. He goes to school Wed. - Fri. so they take him to school and pick him up and he also spends the night there. It is great and allows me to be tired and stop and not have anything in my way. It is amazing. But, we miss him.

We have our consult with Moffitt on Friday regarding the stem cell transplant. I am anxious to learn more about what to expect for that 6 weeks. Stay tuned. I will try to share what I learn.

Paul

2010-09-08T12:13:00.002-04:00

Look at this photo I just found of Paul!

(Taken on Sam Holimon's first birthday! I was pregnant with Zane.)

Flashback: Thanksgiving 2007

2010-09-08T12:01:00.005-04:00

I was going through some photos and came across these photos that Beth Ellen and Keith's friend from Sarasota took. Leo did a fantastic job of getting some shots and I am so happy to rediscover these! Look at our little chunky Zane!!!! The one of Paul and Zane together and the tickle shot are my two favs!!!

Sam and Zane

2010-09-02T17:33:00.000-04:00

Waking up from nap first day back at school.

2010-08-30T12:03:00.000-04:00

POW!!! and My Prince Charming

2010-08-26T11:28:00.006-04:00

The wall also has some flowers added to it from Zane. I will have to take a picture today.

What a champ!!!

I got to watch our good friends, Stephen and Angie, duke it out which was theraputic and full of laughs! Then Stephen had to put an end to all the fun because Ang started getting a little rough!! :)

They have firmly decided that I will be staying one more night in Chez NCH. They have been pumping me with 24hr. fluids since I stepped foot in here so not I am a wee bit bloated and puffy and it hurts when I take a deep breath in. All symptoms of the fluids. So now they are giving me a drug called Lasix along with something else to reduce swelling and bloating and such.

One of the chemo drugs has today cause quite a bit of pressure in my sinuses and my head. Also it is causing me some insane hic-cups which are just on the bottom of the pond and the likable system for me. They can be so strong that they give me about whiplash!! Jeeeezuz!

My little crowned prince came to visit me yesterday after a wonderful and successful day at school! He is now keeping the three days a week but staying longer till 3pm. He even NAPPED! This napping thing may really not be the best thing because it makes little man such a night owl but I felt so darn comforted that he is so comfy at that school that he zonked out on the first day!!! Even will all that is going on!

Well, I have the silk prince crown waiting for him when he got here and a new computer preschool game we checked out on my computer. AND of course a new pez despenser! Momma chooses some good ones and he is starting a tinny collection for sure (Sara, watch out!!!). This time it was a Thomas the Train on. We keep it here and it came with exactly enough packages of candy to last one per day!

(P.S. I apologize for any crazy typing errors or times i don't really make sense. I definitly feel a large shift today in my clarity and ways of making sense of things and the things around me. My hands get shaky from the drugs too so sometimes typing is not so smooth. But, I know you'll hang in there!! Hee!)

This one is for you, Sambolito!!

2010-08-26T10:49:00.007-04:00

I have been in lots of digital touch with my sister in law, Beth Ellen, over the past few day. She has sent her love and her ability to be cool and hack into my accounts all the way from Utah and get things functioning for me. I can now blog a little better and well, she makes me smile.

Then my Mom came here yesterday and opened up the flood gates of communication by letting me borrow her "AirCard" so now I am really good to go.

I love technology in here because man would it get horrid. I don't think that my TV has been on more than maybe two hours in two days because it is just simply obnoxious. Loud, depressing and really nothing to watch. Junk.

So, yesterday, BE told me that Sam was very into looking at the picture of me with all the machines behind me. He is very into machines and robotics.

So, yesterday, his Uncle Paul and Aunt Danielle worked on a mini tour of my room and some other robotic action on the outside of my room.

Check this stuff out, Sambo!!!

My hanging bags of chemotherapy medicine and fluids. They drip slowly through that tubing that you see.

Me, lookin' all so good and some things behind me that they have not had to use on me (whew!). Things like oxygen and air hook ups.

Let me introduce you to my "Tea Making Machine." I really splurged on this one and got the best lookin' and sweetest one around!

Same bags and tubes. Just different perspective.

The full rail that I am hooked up to. Sam, every time I have to go pee-pee I have to unplug this robot and take it will me since I am hooked up to it into my port on my chest. Nothing like a little potty company, huh! Sometimes I just want to request just a little privacy please just like I know you do!!!

Close ups.

Blood pressure checker on left. That is when like you go to the doctor and they put that cuff around you are and it makes funny noises and puffs up tight.

Also on the right is a machine that checks my oxygen levels. They have a little clip that they put on my finger for a minute or so and the robot reads out a number on the screen.

So far I have been rockin' the good results with these robotic friends!!

And here is me in my full glory! My nest so to say.

The picture that inspired all this for you Sam and thank you... it gave me a great opportunity to entertain someone!!!

Now check this crazy robot out! When Paul and I are walking through the halls, these things that really just looks like a box on wheels is really a ROBOT DELIVERY SYSTEM. It has the hallways programmed and knows if you are walking near it. We watch one totally find the elevator and communicate with it which floor it needed to go to. Then work its was onto the elevator! Crazy delivery robots!!! I keep wondering when one is going to run over my toe so I can yell out "hey you! You watch out you wild robot!!!".

Robot getting on elevator.

Robot.

Paul and I are hoping to get some video of them for you before we get out of here tomorrow.

Then just an addition on one of my favorite photos of my favorite cousin friends eating breakfast at our camp ground in Utah a couple weeks back!!!

Ta-Ta!!!

Bird Waxing

2010-08-26T00:41:00.004-04:00

Waxing his little wooden bird that Aunt Beth Ellen gave him for Christmas (along with some lovely lavender scented wood wax. He is very focused.

chillin' (a different day...)

2010-08-26T00:37:00.001-04:00

Beauty

2010-08-26T00:21:00.002-04:00

Olivis (Rachael's sister) took these beautuful shots of our boy.
She is about the only one he would let take pictures of him about the whole weekend.
He loves Olivia. He knows good, kind people when he sees them!

This is a test...

2010-08-25T10:11:00.003-04:00

So last night my sister in law, Beth Ellen, could here the panic in my voice as I expressed all over the Facebook world all the things I came to the hospital prepared to do (as well, as get chemo of course!) but was slowly figuring out I can not do.

I could not get on the blog to do blog post. Made me REALLY mad.

I could not get on my server at work. Made me REALLY, REALLY mad.

Then I figured out I could not attempt to Skype anyone. Well... you can guess.

Oh, also, I can access my blog reader... but can NOT read a single blog out in that crazy cyber world of ours. I don't know about you but I use blogs for all sorts of things. Information, catch up on a pal, laugh and look for constant creative inspiration.

I know without a doubt that if I could have caught up on a couple of my fav blogs, I for sure would have picked up my knitting by now. So far it has sat by my side so patiently. Today will be the day. I don't care if I just do one round.

So, I am posting this blog post through an email system that Beth Ellen has set up for me. I should be able to write and post pics... so we will see... crossed-fingers...

Updates with a Monkey/Batman sort of closure

2010-08-23T21:39:00.004-04:00

It has been a long time to wait for an update after all that but what can I say? It has been so incredibly busy and overwhelming in our lives. I don’t think things are going to slow down for quite awhile.

We have been to Moffitt Cancer Center in Tampa for a second opinion. They have determined that the best course of action is to do two infusions of chemotherapy called I.C.E. followed by a stem cell transplant. My local oncologist, Dr. Morris, agrees completely with this. I have also been very briefly in email contact with a doctor from M.D. Anderson and he too agreed that this is the typical course of action for my case.

(For more on I.C.E. check out:
http://www.macmillan.org.uk/Cancerinformation/Cancertreatment/Treatmenttypes/Chemotherapy/Combinationregimen/ICER-ICE.aspx)

To make this (hopefully just for now) short and sweet, after much thought, confusion, tears and terror, we have made the decision to have the first two chemotherapy infusions done in the local hospital (NCH Downtown). They do this as an inpatient only and I will be in the hospital for three days. I will have three weeks in between each of these treatments. Following that, they scan me. If the scan is “clean” then they send me to Moffitt to do the stem cell transplant. If they are not “clean”, then I do more chemo till they are.

The stem cell transplant will be three weeks hospital stay followed by two weeks where I will have to stay near the hospital in one of their apartments. These time frames are all estimates. What matters is where my platelet counts are and those will determine when I get out of the hospital and then when I get out of Tampa and back home.(More on stem cell transplants later... or you can google away!)

So… I start TOMORROW!!! Tomorrow at some point in the day I will be checking into NCH and I will get my first I.C.E. treatment. I will be there for three days because it takes that long for the infusion. Some of the drugs are only going in me for a few hours at a time while others are going in 24 hours.
(NCH: http://www.nchmd.org/default.aspx?id=725&%3Blink=navmenu)

I can’t even yet get into how I feel about all this except that I am scared out of my mind. And angry. Last time I went through this I was scared of course… but not this much. And I wasn’t angry. The intense anger is a bit new. We will have to deal with that I guess.

I am hoping that since I will be trapped in a hospital for the next three days, I will be able to blog about the experience. Then again, I have no clue how this will go or how I will feel.

To end this on a positive note, my beautiful and wonderful brother, Ben just got married this last weekend to a stunning bride, Rachael. We got to spend a beautiful week in New Hampshire and experience a weekend and ceremony filled with beauty, love, laughter and support. Hopefully more to come once I have a chance to go through some pictures. Right now they are in their new car with their bicycles attached on their way to Canada for a love inspired adventure. I love and miss them so much! (P.S. Paul and I went to Canada too for our honeymoon!!!)

On another totally random note (just to throw it in there!) Mimi took Zane and I to a Curious George Live show back in July! Zane sat glued to it (just like this picture) and YES he did eat an ENTIRE bag of cotton candy all by himself. And I let him. And I thought it was great. (Mimi thought I was crazy!!!) Thank you Mimi for a wonderful evening full of monkeys and blue-dyed poofy sugar!!!!

Two VERY big Batman fans... Zane and his Papa.

A little Ugh, a new toy, and a lotta Dance Party!!

2010-08-04T21:41:00.007-04:00

Well, tomorrow is Bi-lateral Bone Marrow Aspiration Day! Yeah!

Well, to say the least I am not excited. I am not dealing with the anticipation and just general news of my life very well lately. Unfortunately my boys get a bit of the radiating tension but they are handling it well. I will show up at the hospital at 9:45 escorted by my Mom. Our friends, Tiffany and Bryan are taking Zane for the day and having a pool day. Zane has been really requesting some play time with Brianna so this is perfect. He needs some super sized play time. Paul is working because that is where we need him to be. Believe me, we will have a few other days that he will have to take off so this is just an easy day to keep him up with his work. Then Zane will be entertained by my Mom on Friday most likely while I see what kind of healing and pain to expect. I don't expect to be able to sit up for a couple of days. We will see. BUT on Friday and through the weekend the James Family are gracing us with a weekend long visit. This is awesome. It will be a great distraction, provide a lot of help and two more kids for Zane to play with. Sara and I are even discussing sneaking off to get a pedicure!! Crazy stuff!!!

Meanwhile on a happier, lighter note... Zane found a Spiderman scooter at the thrifts store yesterday!!! It was $6 (what a steal) and we took it to the park today with his helmet for a little spin. I don't even know how he understood right away how it all worked. So cute!

(The above picture is because Zane REALLY wanted to take a picture of his scooter all by himself.)

Also, I made some new towels yesterday. I love these things. Sara made a little tutorial for these on her site here. But when I made them this time I just dug through my scrap basket and make them all kinds of sizes just depending on what I had. I LOVE having these to wipe down my kitchen and wash dishes with. Whipping up MANY more of these soon!

AND.... Tonight, after returning home from dinner, my boys decided to do a late night dance party in the kitchen. The music is Zane's music jammin' from my phone on the kitchen counter. It was so funny and Paul was quite the funkster!! Yes, don't worry, he said I could post this. He is so awesome. I was smiling so big and laughing so hard because I was so proud to have such happy beings in my life. What a lucky girl I am!

here WE go again

2010-07-31T20:58:00.004-04:00

I have a friend. A sort of Internet friend that I have now met. She is amazing. We have been "walking the same line" for the last couple of years. The cancer line. The Hodgkin's Lymphoma line. The raising a young beautiful child and having a happy, comfortable family line.
So she is a friend. She is really almost like a sister through the lines. The Internet lines, the phone lines, the cancer lines, the anger lines and the healing lines.

She posted this after she finished up her chemo just like the chemo I had done...
"here i go again"

Now I am posting this.
This is not fair and nothing about this makes our world seem "right."

So some of you know. Some of you don’t.

Until now I have just not had the room in my chest and lungs to put this together. To give it life.

The cancer beast has crept back into our household and is about to have some sort of grip on us for the next couple of years again…

My last couple of scans (4 months apart) showed a large lymph node in my left arm pit. After it showed up the first time my oncologist was not really worried about it and just wanted to keep an eye on it. I was fine with that considering that so much goes on in the lymph glands in your arm pits that I really thought it was hugely possible that it was just inflamed because of some virus I was fighting or irritation to something. So, we waited four months and got the next CT Scan. During this time Paul and I decided that if the lymph node was gone or at least getting smaller than we were going to give ourselves the go ahead to try to have another child.

Four months later I followed up with the CT Scan and to our shock and disappointment the damn lymph node was slightly larger. Not large enough to alarm my oncologist and he just wanted to follow up in another 4 months with a CT and check it again. But during the appt. that I found this out it was extremely difficult for me to keep it together. I was sad, angry and so very disappointed. He picked up on this and tried to comfort me with the thoughts that he really didn’t think it was anything. I still could not pull it together and so I decided to explain to him why I had such great sadness. That Paul and I wanted to have another child and we just were at such a loss as to whether to treat this with severe caution or not. At the mention of this he immediately leapt on the idea of following it up right away with a PET Scan. I was scheduled for this the following week.

The PET Scan matched the CT Scan and at this he decided that it was a good idea to now schedule a biopsy of that lymph node. I truly believe that he thought confidently that the PET was not going to show what it did.

So, on Friday, July 23rd I went in for a lymph node removal and biopsy. I did not share this with many people at the time. It just felt to me that if I did it would some how give it "life" and "strength". I was telling myself that I am going in to get this done to put our minds at rest and get on with our living. It was quite a surgical process to do this one because I first had to be put under and sent to radiology where they put me under a CT machine so that the lymph node could light up on the screen and then a surgeon could insert a needle (but more wire like) with a hook on the end directly into the lymph node. This was to ensure that the surgeon that was removing the lymph node knew exactly which node to remove. So after I got that wire inserted, they woke me up and put me in a holding pattern until my next surgery was scheduled. They put me under again and then did the removal surgery. During that surgery he had a slight complication where he had to go through one of my vessels and I had a bit of a bleed but it was quickly controllable.

Ouch. (And no, that's not my nipple, that's my finger.)

That day I came home. They were not going to do a frozen section on this one. It would be sent to the lab for the pathology to be done, so I would not know the results for several days. I had a REALLY hard time with that amount of anesthesia though. I came home very sick and stayed that way until that evening. I am still day-by-day healing. I am sore. Really sore. I have a hard time using my left arm for much of anything. Not that I'm helpless, but I for sure can’t lift too much. And after a full day of doing normal things, man does my arm ache!!

So, it was Wednesday, July 28th that we got the call that the pathology came back showing “recurrent” Hodgkin’s Lymphoma.

Shit.

God damn. God damn.

And really just plain FUCK. Really? Fuck!

So maybe some more detailed feelings and such will follow, but on to the technical parts of the rest.

What is next? I know, really, what the hell next? Then after that? Then after that?

Well, to outline the medical part of it for now (I see some sharing of some other outlines in the future. It seems to me that my mind is organizing in this way constantly so maybe I will bless you all with my mind coo-coo)…

1. Had lab work done at my oncologists to check all my current blah-blah-blah levels.

2. Bi-lateral Bone Marrow aspiration. This will be performed at the Downtown NCH on Thursday, August 5th. I arrive at the hospital at 9:45am. Bi-lateral meaning that they are going to take samples from both of my hips. Ouch! Right? Jesus. They do this in order to, once again, “stage” me. The one thing I guess is good is that no other lymph nodes are “lighting” up on the CT or PET Scans. So the only other step is to make sure that it is not in my Bone Marrow (worst case scenario meaning Stage 4 HL). If it is in my bone marrow than we are in some yuck shit that I still don’t want to understand. I had a bone marrow aspiration the last time but in only one hip and wow was it a sore one. Should be fun.

3. Then on Tuesday, August 10th, we will travel up to Tampa to go for an appointment at the Moffitt Center. I will be getting lab work done at 1:30 and then have an appointment with an oncologist (Dr. Celeste Bello) at 2:30. They reason I have to go up to Moffitt at this point is because at this point nothing is done without a second opinion. Also, most likely what will be recommended at treatment will be a higher dose chemo than what I had before. Those types of drugs are not available in Naples or Ft. Myers and the closest would be in Tampa at Moffitt. Moffitt is a specialized cancer hospital with all the more serious stuff that I have no understanding of. Yet.

4. The following week is my brother’s wedding. So, no matter what… I will not be starting any sort of treatment options until I return from our week in New Hampshire fully immersed in celebrating the wonderful connection between my amazing brother and his beautiful bride and best friend.
I will write more as time goes on. We are all trying to keep ourselves in some sort of holding place, so to speak. We have lots of anger. Deep anger. Frustration. Confusion. Sadness. And we are scared out of our damn minds. Terrified.

I am sorry if sharing big details or sharing pictures of this puts anyone off. I plan on sharing. I hope that I have it in me and my body to keep sharing. This process should be shared because I think it can be so helpful and educational in ways that I am not even sure of right now. Sharing helps me. I hope to use this place as a way to get some things off my chest. Or to simply update. I did learn that from the last time that this space on my blog was truly the best way to communicate with those concerned, worried, out of the loop or just plain curious.

I have already gotten some calls from you beautiful people out there and I love you very much and I will call you. I don't know totally when. I try to have a goal to at least accomplish one phone call a day... maybe two. But there is a lot to manage.

Love to you all and my biggest goal right now is to take care of not only myself, but my family. This is so unfair to them. Also, to try my damn best to turn this boiling anger into some driving strength and ambition.

Stash

2010-07-26T19:39:00.002-04:00

Trip to Salt Lake City for Gramps Camp (Holimon Reunion)
+ two awesome dudes to hang with older boys
+ two awesome ladies and a little Charlie to shop with
+ two beautiful yarn shops
=NEW STASH ADDITIONS!!!
Yeh!!!

Our very own Huck Finn

2010-07-26T18:54:00.001-04:00

Beach Bags

2010-07-10T16:20:00.003-04:00

Took a beach trip to Longboat and Ana Maria Island over the 4th of July weekend (photos to hopefully follow) and I made all of the kids these awesome beach bags (out of Amanda Soule's book Handmade Home). They really turned out awesome and they were super fun and easy to make. They are made out of window screening which I bought at Home Depot (a whole roll cost me $5) then the rest of the stuff is all out of my fabric and ribbon stash!! The names I put on with Zane's (and mine too!) alphabet stamp set (Melissa & Doug) and the same fabric paint that I previously used on Zane's stenciled shirts. It worked great and they really are cute little treasure bags. Would be great for beach goers or forest hikers alike. Just somewhere to stash your treasures and all the dirt and sand just falls away. I even took Zane's shells and then just dipped the bag in the ocean and all the sand just washed away. Awesome feeling when you put your work to the test!!

"Our destiny is written in the hand."

2010-07-08T11:18:00.003-04:00

I found this video on a blog I like to check on from time to time (www.masondixonknitting.com).
I am mesmerized by her... I hope to one day be as grounded and sure and aware and beautiful as her... I want to learn more about this woman. Just watching this and listening to this woman helped me ground myself and fine confidence in the fact that I have found right tracks in my life. In more ways than just knitting...
Our hands ground us in the universe just as much as our feet.

Just one of those things...

2010-06-29T15:07:00.003-04:00

I really like this. I think it may someday in the future make its way into our kitchen.

So darn cute!

Storytelling

2010-06-28T20:31:00.002-04:00

Zane told me a couple days ago after I told him a story that he wanted to tell me a story. He had to "set up" first. So he got his little chairs out and set them up next to each other and while he was busy doing that I secretly managed to set up the camara in a perfect spot (total luck!). Now you too can enjoy his storytelling...
(Please ignore my oh-so-hot pjs, sock and croc outfit I am sporting! You know you dig it!)

Beach Jazz & Shirley Temples

2010-06-27T22:38:00.005-04:00

I love and have ALWAYS loved going to the Naples Beach Hotel Summer Jazz Concert Series. It is not always that the music in super great all the time but it is the place, the beautiful beach, a good reason to hang out with family and friends and have a drink... outside during the summer. It is hot. It is humid. But really down at the beach at that time of day... couldn't be better!

We went last night and the best part of the evening is that Zane had his first Shirley Temple!!! He doesn't even drink soda ever. Whenever he has tasted it he has immediately told us it is too "spicy." But last night... well, I think it had something to do with the 8 or so cherries floating on top, but he loved it!

Check out his bandaids!!! He is so into them right now that we have to buy them just about every week!

"Ahhh, a little spicy but it's good!"

I love this picture.

Yum.

"You can't have a cherry!!"

And if he is anything like me... the obsession with maraschino cherries begins!

Sunset...

Book of Love

2010-06-26T09:14:00.001-04:00

The Facebook Interuption

2010-06-21T16:48:00.002-04:00

So I have realized over the last year that Facebook has put a slight interruption into my blogging section of my life. It is sort of unfortunate because what Facebook has allowed me to do is very quickly post something that tickles me or makes me laugh. I can do it from wherever I am.

I am constantly sharing little tid-bit stories from my days with Zane (and sometimes other kids as well). They can be hilarious, amazing and awakening.

So, sometimes, I am trying to promise myself that I will also publish it here. Really, for all of you out there... you all read it on Facebook. BUT I am trying to turn every year of my blog into a keepsake book for our family and the stuff I write and post on Facebook will never be read by Zane himself unless I take the time to copy it here... on this blog.

So today has been a riot... I truly love this kid with everything that I've got.

Ok... so I just discovered that one can not copy and paste into Blogger. WHAT?? I am unhappy. This is more difficult than I thought. I have been thinking a lot lately about switching blog places. I may need a new home...
___________________________________
Zane told me today that it would be cool if I could get him a tree that is on wheels and would follow him around everywhere so that the sun would not be on his face and back. Groovy!!!

___________________________________
So Zane and I are hanging at the house and I have to get some work done so he gets busy in the bathroom (one of his now favorite places to play) concocting his "polish" (some sort of mixture of soap, toothpaste and water_ and polishes for a very long time anything he can get his hands on meticulously with a q-tip and cotton ball. This is a great little busy activity and gives me some time to work. I realize that I have not heard a sound for the last 15 minutes and went to check on him. The bathroom is all cleaned up with all of his items laid out to dry and he is safely tucked into bed with his Biddy Bear fast asleep. What did I do to deserve this beautiful little human in my life?

__________________________________

Maybe more to come... as time goes on.

Zane went to the dentist...

2010-05-27T17:57:00.002-04:00

... and was AWESOME!!!!!!!

My Sweet One on Mother's Day

2010-05-17T09:31:00.002-04:00

Monkeying Around

2010-05-17T09:29:00.002-04:00

Dolphin Shows

2010-05-03T20:13:00.010-04:00

The scene in our car on a typical trip to Clearwater to visit the James Family.
He only gets to use the DVD player on long trips and airplane rides so he just totally loves it when we get in the car for a long ride!! Tee hee!!! And look at Dylan so cute in the back seat! I can't actually believe she looks sort of calm. She is normally very "green in the face" when we travel. By the way... have I told you lately how much I LOVE my mini-van!

Now when we go to see the James Family their is a rescue aquarium very near their house that we go to for a look around and a quick dolphin show. Maya and Zane are all about it and make it really fun! (http://www.seewinter.com/)
So here is pics from our trip that we took back in September for Oliver's birthday.

Waiting for the dolphin show.

Cute play time.

Dress up.

-----------------------------------------------------

Here are pics from our visit back in January for Sara and Sam's birthday!

You will notice in these dolphin show pictures that Zane is wearing an unusual pink shirt. Yes, Maya decided that she was going to get Zane dressed that day. Then Zane insisted that he did not need to be changed for the show. What can you do but take your cute boy out in a pink shirt! Whatever!! It was awesome!

Watch this boy! He is so happy to be there!

Then when we got home Maya decided that Zane needed matching pink cordoroys and cowGIRL boots! Of course!!

2010-05-03T20:08:00.002-04:00

Jasimin & yarn.

Spivey & Jazmin: "When she is not lookin' it is ALL ours!! Is she lookin'? Is she lookin'?"

Our Garden: 2010

2010-05-03T10:03:00.002-04:00

TONS of kale!! Paul washed and dried out a load of kale one day so I could make a mother-load batch of kale chips!!

PLUS TONS of grape tomatoes that I have yet to take a picture of because we eat them too fast!!!

We LOVE Zane's School!

2010-05-03T09:45:00.002-04:00

Parent Coffee Hour (They have this for an hour one Friday morning a month.)

Mrs. Arloro (Director)

So happy to have Mommy there!

His "works".

Mrs. Redd (His main teacher. She is AWESOME!!! She has the calmest presence I have ever experience in ANY type of classroom!)

The older class (his school goes up to 7th grade) put on a Renaissance Festival for the school. It was done so well and it was so cute! They really put their all into everything they do there and we are just in love! Even all of their food is cooked fresh in their kitchen by a full-time cook and I have eaten there many times now and I wish that I could have lunch there every single day!

Art

2010-05-02T21:22:00.000-04:00

Koreshan State Park: Earth Day Festival

2010-05-02T21:09:00.002-04:00

2010-05-01T23:41:00.000-04:00

Surprise!! HAPPY EASTER!!

2010-04-03T21:31:00.005-04:00

Yes, it has been awhile. I will never catch up but one day soon I will make a good darn attempt. BUT I just was inspired by some of the beautiful spring Easter fun we have been having and wanted to share some pics of the cute one and our creations.

It all started a couple weeks ago when we decorated our Easter tree. It turned out so cute!! I have loved looking at it ever since we put it up!

I made a little bunny to go with the bigger one that I made last year. The little bunny though is now residing in Utah with Cousin Sam as Chief Helper to Sam at his animal hospital.

Today we decorated the eggs for the Easter Bunny to hide. First was the half dozen onion skin dyed set. They turned out BEAUTIFUL!!!! I think that if I can get away with it... it will forever be the way we dye our eggs. It was so easy, simple and they are gorgeous!!!

Just look how COOL!!!

Then we did a half dozen with the crazy egg dye. They were ok. Not quite as cool though!!

Loving how one of them says "Zane" that we wrote with a "magic" crayon!!

Tonight we set out everything for the Easter Bunny. Our Easter table is stocked with a dozen beautifully colored eggs for him to hide along with a little snack for a busy bunny of water, baby carrots and arugula salad, and Zane dug through the frig for some extras and decided that the Easter Bunny also needs an apple and a lemon too (only the best for this bunny's little snack!).

So Happy Easter Eve everyone and enjoy the celebration of Spring!!!

We sure are having a fun time (but it may be interesting when the Easter Bunny has to chomp into that lemon later)!!!!

Grandparent's Day at Zane's School

2010-03-01T21:10:00.003-05:00

We are in love love with Zane's school. It is incredible. Here are some pictures of Grandparent's Day. He had quite a turn out throughout the day! His Mimi (grandmother), Grand-dad (great-granfather), Gradeau (great-grandmother) and Nona (grandmother) all stopped in to spend some of his day with him! What a LUCKY little dude he is! He showed all of them some of the "work" he likes to do.

Waking Up

2010-02-15T20:22:00.001-05:00

Jazmin. She sleeps with him EVERY TIME he sleeps. Naptime. Night time. Anytime.

Crazy Snow Lovers

2010-02-15T14:22:00.003-05:00

You have got to see what my crazy snow-lovin' brother and his fiance are up to this winter!
Check out these videos!

Do You Kazoo???

2010-01-18T13:00:00.000-05:00

Elements

2010-01-16T11:22:00.000-05:00

Rain

2009-12-09T20:45:00.000-05:00

The Christmas Elf Has Arrived!!

2009-12-07T21:32:00.003-05:00

The Christmas tree is up (although not yet decorated!!), his snowman sheets are on the bed, his santa towels are in his bathroom, Santa Mouse and Olive the Reindeer are being read tonight and the elf suit is in full gear!!! Expect to see this little elf quite a bit this month cause he LOVES his elf suit (and "boo-hoo" cause this is the last year he will be able to fit in this one!). Auntie Rae-Rae is the coolest craftster around for making this one last year!!!

Conversation With Our Three Year Old

2009-11-22T10:23:00.001-05:00

FISH
While walking on the Naples Pier the other night after a wonderful family picnic on the beach, Zane asked me what the big tables were in the middle of the pier. We had just seen some people fishing and they had some fish on the ground and we had already explained that those fish were being used for bait to catch bigger fish. So, after this question I told him all about how those people will bring their bigger fish here after they catch them and cut them up and take them home so they can eat them.

Well, he replied with “Mommy, won’t that bother the fish?”

What do you say?? Well, yeah it bothers the fish.

MS. SUSIE
My Mom takes Zane to Kindermusic and has for quite some time now (almost since he was about 6 months old!). He LOVES it! It really is probably the best hour of his week most of the time. His favorite part (and always has been!) is Ms. Susie. We always joke and comment around here that Ms. Susie is for sure his first girlfriend. When he talks about her he just lights up and gets all calm and dreamy. So funny and truly, she is AWESOME!!

So, part of the routine at Kindermusic is that one song is always used as a quiet time. It is a soft lullaby type song and all the kids pick one stuffed animal and they cuddle with their Mamas or in Zane’s case, Mimi. It is, to me, the most magical time in the session. It is beautiful. All the kids get so sweet and quiet and cuddle with giant teddy bears and rock back and forth with someone that loves them. Most of the time when this is happening, Ms. Susie is wandering around the room quietly, swaying, sometimes dancing. On one particular session with Mimi, Zane was totally into the quiet time with Mimi and looked up and watched Ms. Susie swaying and dancing around the room for a while. He then so, so quietly whispered as quietly as he could to Mimi, “Mimi, Ms. Susie is JUST like a princess.” Then promptly put his head back on his teddy bear and continued to dreamily watch her.

Magical.

Night Picnic on the Beach

2009-11-21T21:38:00.001-05:00

The Garden Is In

2009-11-18T15:02:00.001-05:00

Today's Snooze

2009-11-16T21:21:00.002-05:00

Does it get any more beautiful than that?

The Holimons Visit for the Weekend

2009-11-16T20:26:00.004-05:00

We enjoyed a visit from Gramps, Aunt Lala & Uncle Jimmy this last weekend...

Campfire and Marshmellows!

Dragons, Playgrounds and Picnics!

Boat Rides, Family and Friends!

We were all invited to enjoy a Naples Bay Cruise and lunch at Pincher's Crab Shack fully hosted by the Leukemia & Lymphoma Society.

The Boys.

Making Friends.

Uncle Jimmy!!!

The Sexiest Husband Eva!!!

And Me. Healthier and Happy.

More Picnics and Smiles

2009-11-16T20:13:00.002-05:00

We have been blessed with weather that allows lots of picnics! We have been loving it!
Check out his smile for the camara...

Are You Happy?

2009-11-12T21:38:00.003-05:00

Making Risotto

2009-11-11T21:21:00.002-05:00