Lil Blue Boo

I didn’t sleep that well last night…..I think I was antsy for today. So I found myself eating pistachios on the couch at 3:00am and watching Superman.  I think I fell asleep finally around 4:00am. at Mr. LBB finally woke me up at 7:30am to start getting ready.

I was the first person in the doctor’s office today. Mr. LBB and I met with Dr. L about side effects and what to expect from the new chemotherapy regimen. He just kept stressing how hard this was going to be on my kidneys…….and overly hydrating was going to be really important.  EMA-EP is the treatment we ended up settling on. Today was the E & P portion. Cisplatin and VP-16. The EMA is next Thursday and Friday. Those are some BIG bags waiting on the IV stand:

Of course I met a lot of interesting people. I was talking with a guy who has to be fed through a feeding tube and he said he imagines a big ham sub going through the tube. I told him he needed scratch and sniff stickers to help….I’d look for a ham sub sticker. I don’t think he was too excited. Then I felt bad eating my lunch in front of him. There was an elderly man there that looked just like my Paw-Paw. It made me a little teary. He looked so frail and tired.

All of the sudden this afternoon, the entire room was asleep it seemed….except for me of course!  I started feeling weaker and uncomfortable as the day went on. And full. And lots of heart palpitations.

They weren’t able to start my big Cisplatin drip until about 12:30pm because I had to get so many fluids beforehand as well as the nausea medication drips. The Cisplatin drip was 5 hours because it had to drip with an identical bag of fluids for hydration to make sure my kidneys would be flushed out.  I also try to drink a ton of water SO I made 4,291 trips to the bathroom. It got to the point that I wouldn’t even have opened the bathroom door  to exit before I had to pee AGAIN! I wore a hole in the linoleum I think:

****

I wrote the beginning of this post while I was still at the doctor’s office. Now we are home and I’m not feeling so hot….so bear with me if this post is all over the place. I’m writing in in small increments at a time. My poor heart feels like it’s on overdrive.

Mr. LBB picked Sienna up from school and picked me up from the doctor. I was the last patient there. First one in this morning…..and last one out. THAT is a long day. I was getting a little competitive with the last man there to see who would leave first. His drip finished before me and he said he felt bad leaving me by myself. Aw. I told him they needed to upgrade the place to lounge chairs by the pool and cocktails and I’d be set.

Now I’m in bed…..I was so hungry I ate in bed….one small fork at a time….just laying on my side so it would stay down. My legs ache. I feel really crampy. And just too weak to get up. Boo was on the bed talking to me and it took several minutes for it to even register that she was talking to me. Mr. LBB brought my laptop to me so I could write all this down. He’s now trying to find my Zofran so I can keep my dinner down too.  Dinner was really good…..I’d LIKE to keep it! They gave me a diuretic shot right before I left the doctor…..so I have to pee every 5 minutes still…..and I’m supposed to keep hydrating so my kidney’s are okay. If we lived more that 5 miles from the doctor’s office I would have to pee on the side of the road. This was a POWERFUL diuretic. So now Dr. L scared me into staying hydrated for the sake of my kidneys. It’s really not that bad though……I don’t have to do anything……I’ll just lay here and drift in and out of sleep and drink as much water as I can. I’d really love a shower….but I don’t have the energy. Who wants to volunteer to give me a sponge bath?!

It’s all good though. Dr. L said we are now “Rambo”-ing my body to try and kill this cancer. From now on, I’ll have no rest at all between chemotherapy until my body just can’t take it anymore and he’s forced to give me some time off. Works for me! Rambo the crap out me…..just kill this cancer.

Goodnight everyone! Much love to you. I’ll reread this tomorrow in case I need to fix anything. Just be glad you are reading this online….I kind of smell like fried bologna.

Oh my, I am EXHAUSTED!   Mr. LBB and I took Boo to school this morning and headed immediately to L.A.  for an appointment. It takes about 2.5 hours to get there from the desert. It’s hard to ride in the car for that long right now…..but I look forward to our long car rides because we get to talk!

Me: Oh my gosh! Doesn’t that parking sign look like a giant donut???!
Mr. LBB: Please don’t distract me while I’m trying to navigate this traffic.

The trip worked out well because I desperately needed to pick up the rest of the fabric for the spring line. It was only about 12 miles out of the way. You can’t get better than that for killing two birds with one stone. The fabric filled the Prius to the brim! Mr. LBB didn’t want his picture taken while driving 70 miles an hour…..so it looks like I have a phantom driver…..to go with my phantom hair. I also look like 1. I have a fake arm or 2. someone stuck my gigantic head onto a fake body…….so I had to share this pic:

I really don’t think it could have been a more hectic day. While in L.A., the school called and said that Boo had a stomach ache. Thank goodness we put a few people on call today for Boo emergencies! Lisa was working at the house and went and picked her up. Turns out it was just constipation. Mr. LBB was on the phone all day with vehicle issues at his work.

My Choose Joy bracelets came and they messed up the whole order and didn’t want to fix it…..in fact they wanted me to pay extra for their mistake.  I REALLY wanted to tell them to go “f” themselves haha……and how ironic that my blood pressure went through the roof over “Choose Joy” bracelets.  I had to take a few deep breaths today and remind myself of my own mantra.  Anyways, if you’ve ordered Choose Joy bracelets…..it will be a little longer. I’m so sorry. If I could make them myself I would. Mr. LBB says I never get worked up except when I’m trying to “right a wrong” on principle…..and then I can turn into a crazed lunatic on a mission.  P.S. I finally DID tell the company to go “f” themselves**….JOYFULLY I might add…..and it made me feel AWESOME.

**Disclaimer: (especially for my mother) I never say the actual “f” word…..but I do say “eff”……it’s still kind of a bad word….but it doesn’t sound as bad. So when I write “f” I’m really saying “eff” not “f@#$” because I supremely dislike how bad the real “f” word sounds. How’s that for an explanation.

So, Boo’s been taking it hard recently that she doesn’t have a sibling. I only bring it up because Mr. LBB and I talked about it in the car. She brings it up a lot at night when we are watching a movie or show where there’s a large family:

Boo: I REALLY want a brother or sister! You guys are taking forever!
Me: You will one day…..now just isn’t the right time. Mommy has to get better first.
Boo: But I really wanted you to have a baby out of your tummy!

I’m sure it will be a while before she gets it.  After my surgery we talked about adoption. But now that’s out of the picture: it’s not the right time and no agency would even consider us until I’m in full remission. For now I gave her a mannequin….where do I pick up my “mom of the year” award? Kind of morbid…..but Boo has a wild imagination and she doesn’t even care that her “pretend” sibling is missing a very crucial body part:

Countdown two days until my new chemo….bring it on, seriously! I limped into the house from our car ride.  Something needs to shrink this stuff in my pelvis and pronto before I decide to do surgery on myself!

Hope you all had a good day! I’m so excited to be home…..and my friend Seena brought over some yummy Indian food…..can’t wait to curl up in bed with Boo and watch 40% of the movie 2012 (since I have to censor 60% of the scary movie).

I think it’s official that I go overboard on documenting life’s little moments…..I found this on my phone this morning….a photo of me washing my hair for the last time before it went bye-bye. Mr. LBB doesn’t even flinch when I say “hey, can you take a photo of me taking a shower?” I did have to delete some boobie shots……I’m sure he took those on accident.

I have phantom hair syndrome. I googled it and it actually came up on the Urban Dictionary: A piece of hair on your face which after multiple swipings and wipings wont come off. You can feel this hair, yet you cannot see it, therefore extremely hard to remove, and especially annoying.

Last night I picked up a hair tie and tried to reach back and put my hair into a pony tail. Every time I get in the shower I instinctively pour a large amount of shampoo into my hand. I’ll let you know when I recover from this.

Yesterday we drove to my sister-in-law’s house in Ladera Ranch to celebrate my nieces’ birthdays. We knew it was raining there and we told Boo and she immediately turned to the dog Diesel and said “It’s RAINING, Diesel!!!” I love that she talks to our dog like he’s a human. We saw some incredible rainbows along the way….it was so windy Mr. LBB had to be really careful so our car didn’t get blown off the road:

My two little nieces, Sawyer and Cari, were born only a day a part. These two gals are my little buddies. Seriously, they make me laugh all day long. And they couldn’t be more different from each other.

Sawyer is so sweet and polite…..once I accidentally knocked her down and she apologized to me instead. She’s very organized and follows every little rule. But she gets a one track mind….and reminds me of the talking dog Dug in UP…..when she sees something she wants, like maybe a potato chip…..she’ll repeat “chip, chip, chip, chip, chip……” 4,000 times. She doesn’t like to be dirty or messy. Her vocabulary is better than mine. Sawyer just kept calling me a pirate and saying “arggggh” and then laughing hysterically.

And then there’s Cari……she marches to the beat of her own drum. I call her my little “pig pen” because she will do a face dive into dirt or sand and just lay there and enjoy it. And she’ll eat a little of it too. She’s the most independent child I’ve ever met….and the most fearless. She makes up her own language and it’s awesome. She’ll decide if she’s going to talk to you…..and when she does you feel like you’ve hit the lottery, literally.  I took off my hat for the first time for Cari…..and she kept looking in my hat for the hair. Oh and she’s almost impossible to photograph.

While we were gone for the day the crazy wind storm set off our burglar alarm. The alarm registered on 4 different doors…..THAT is a lot of wind. Poor Diesel! There were palms all over the place and you could tell the desert had been buffeted! The Internet was out and we went to bed and I slept in late this morning:

So I have a confession to make……I haven’t been going to church. I haven’t been in a long time….like years (except for holidays). I don’t want you to misunderstand though…..I am very religious. I read my devotionals and I pray several times a day. Boo goes to a Christian school.  I grew up in a very religious home and I know every bible story inside and out…..I can even recite the books of the old testament in under 14 seconds (I use it as a party trick).  But I’ve just never felt like church was for me….why do I have to worship in public?  I’m the one that plays tic-tac-toe in church…..or makes my grocery list…..and checks off the items in the bulletin to keep track of the progress. Yes, that’s me.

It’s the first weekend since my mother left and she had been taking Boo with her to Sunday school. So I asked:

Me: Do you want to go to church this morning?
Boo: YES!!! I LOVE Sunday school!!! Get UP!!!

Well, I don’t want to be guilty of depriving my child of the word of God…..so we got up and went to church. The church was PACKED when we got there and Boo TOOK off running and sat in the very front on the side where no one was sitting. I was sure they were reserved seats at first…..but she knew where she wanted to sit. So much for going under the radar and sitting in the back. We had to follow her and walk all the way down in front of everyone and sit where literally where everyone in the whole congregation could see us….and then Boo starts waving to everyone that she recognized.

So we sit down and the first thing I realize is: my NAME is on the prayer list…..which is a blessing, except I’ve been skipping out on church even when I felt up to going…..so I felt super guilty. Then the first announcement is that 2 church members had passed away from cancer in the previous days.  This isn’t starting out so great. Next came the children’s sermon in the front before all the children are dismissed for Sunday school….and the teacher brings out a huge ultrasound photo. I was just waiting for Boo to yell out something like “hey guess what, we were talking about this last night and my mom can’t HAVE babies anymore.”  At one point, my pelvis area started hurting and throbbing and I felt faint and couldn’t stand anymore….so I had to sit down while singing. Then, I drank so much water….I had to walk in front of the entire congregation for an emergency bathroom run. The women’s room was occupied so I used the men’s bathroom and just prayed that no one would come in. When you have to go, you have to go.

Of course everything is in God’s plan…..because today was the first day that I felt like God was IN church. I’ve never felt that way before. I like to do everything in my own time and I always felt like I was being forced into a time slot with God on Sunday mornings. If I feel like I’m being forced into something….I’ll run fast the other direction. But on the other hand, every day I feel like I am overflowing with faith….and trust…..and peace……except that I am lacking in the scripture knowledge to back it up.  Today….I listened to every word….and for the first time, in my whole life, the words made sense to me.  I was interested. Pastor Julie’s sermon was on Psalm 25 and I related to every sentence: YES, that’s why I’m not fearful! God IS giving me guidance…..I just couldn’t put it into the right words before. All that I am DOES belong to God…..that’s why I have faith and know that this is how my life is supposed to be! That’s what I’ve been trying to tell people!

The hymn after the sermon was Surely the Presence……and I felt like God was saying “don’t forget this for next Sunday.”

Then I got home and pulled out my dusty bible to mark Psalm 25…..and I found 100 post-it notes all throughout it that my mom left me marking passages. Thanks Mom.

So, I can’t promise that I’ll go to church EVERY Sunday. But, I’m already looking forward to next Sunday.

****

So….now I’ve had a few days to think about the fact that my cancer is chemo-resistant and there is something growing inside of me that hasn’t been stopped yet.  Yes, it does cross my mind every once in a while that I might die from cancer.  I even asked Mr. LBB to make sure there wasn’t any “cancer clause” in my life insurance policies. But it’s not fear….it just crosses my mind. The only thing I actually get nervous about is being in horrible, horrible pain. Let’s be honest…..I “dialed-a-c-section” with Boo…..because I had no desire to go into labor if there was an easier way to get her out……and I tried breastfeeding ONCE because it grossed me out and I thought I might throw up on the baby. This Thursday can’t come soon enough…..for the start of the new chemotherapy…..I’m being really impatient. I’ve filled every day until then with an activity so this week will go fast. We are also starting to look outside of the desert at some specialists. Dr. L is doing the best he can, Dr. R at Loma Linda has been great, and I hate to go far from home, but that might be what it takes! No dilly-dallying around.

I hope you all had a wonderful Sunday with your families!

Show me your ways, O Lord. teach me your paths.
guide me in your truth and teach me.
for you are God my Savior,
and my hope is in your all day long. Psalm 25:4-5

Because I know that all of you are waiting on pins and needles for this news:

(It only took a few cumulative days of senna-Miralax-colace-enema-cocktails. TMI? Sorry….it’s big news around here.)

Have a great weekend!

P.S. Thanks cousin Vicki for the awesome shirt!