Photo of the Day: Sleepy….and Itchy!

Thank you so much for all the sweet thoughts and encouragement yesterday. I wanted to pop in real quick and say hi! Gicela helped watch Boo most of the day out in the studio and I spent the day sleeping after I got back from chemo:

 

I only slept about 2 hours last night. My body was just wired and restless. I felt like every nerve in my legs and arms were going crazy! I ended up being able to sleep a little on the couch last night with my feet tucked tightly in the cushions and with a cool-feeling lightweight down comforter. And I was so itchy! I felt like Boo when she says that she “itches, but the itch keeps itching back!” I took three showers from last night until this morning trying to get rid of the “toxic” smell that I felt kept coming out of my pores. Even my pee smelled toxic! My joint and muscle pain went away this morning.

I DID remember to take the “take or die” drug this morning at 7am sharp and JUST took my 2nd dose a few minutes ago. The nurse’s scare tactics worked. Today’s chemo was only a few hours but my legs were so restless I couldn’t relax in the chair….I just sat leaning forward.  I can’t even remember what I got except for Etoposide which I lovingly refer to as the “hair loss drug” …..but I do know they gave me Benadryl with my pre-meds to stop the itching. It worked a little! I’m going to try to get scheduled to have a port put in my chest before next week’s chemo and blood draws because both my arms are so sore and tender now. One of the nurses was talking about how big the bag of Methotrexate was yesterday and said “don’t worry, my daughter went on to have two babies after her chemo”……I didn’t have the heart to tell her that they had taken my uterus out already so I just smiled and said a quiet “thank you.” There were a lot of familiar faces at the doctor’s today….but I missed Mr. F and Mr. S.

Boo is acting out today. While I slept and she was playing in the studio with Gicela….. she cut every thread from every machine…..which only makes more work for Gicela tomorrow. I haven’t felt well enough to make it to daily prayer circle at school with her the last few months and that was her reason for doing it…..I guess she thinks when I don’t take her to school I’m sitting around here sewing. I tried to explain to her that I am just resting when I don’t take her. My MIL is taking her to a movie tomorrow and my mother flies in on Friday for a few weeks so that will help tremendously and I’m really going to make an effort to make it to some prayer circles when school starts back up.

My appetite has been really good this afternoon! I woke up starving which means all the anti-nausea medicine is working. I can’t lose anymore weight or I WILL start looking sick so I’m on a mission not to. My sweet friend Mandy brought me Tabouli from Costco which has been my “go to” snack right now. My spirits are high and everything they do to me is only getting me closer to being better……and as I always say, at least it’s not Boo.

Oh and I almost forgot! My HCG levels were a huge drop this week too: around 500….but I can’t remember the actual number. Thank you God! That’s progress!

Happy hump day everyone! I’m getting so excited for Christmas!

Much love,

Ashley

Something Borrowed and a Li’l Blue

This morning I felt like I was getting married or something…..or starting a new chemo regimen…..it’s a chemo marriage.  I had a bag packed with something old (my 2 year old running shoes), something new (comfy outfit from my friend Staci and her mom Elaine), something borrowed and blue (Boo sent her blue Ugly Doll Ket)….I made sure Ket was in a few photos:

 

I was supposed to show up at 8:30am. When we got there my FIL Barry showed up….he had just finished his morning rounds at the hospital. Let me tell you…..it is such a blessing to have him in the most important meetings with my doctors. He absorbs all the information and asks the right questions and I know he’s looking out for me.  Dr. L says “no one wants to treat a doctor’s daughter but I will just treat you as if you were my own daughter or sister.”  That works for me!  Gale my MIL surprised us too at the doctor…..she left before we met with Dr. L to take Boo for a manicure and some Christmas shopping.

 

 

We went over my scans from last week again and the risks of the treatment with Dr. L. The decision was to get through a few rounds of the EMA-CO regimen and then do some more scans to look at my liver again to see if anything happens to the tumor there. No one wants to biopsy it….the risks outweigh the benefits and if anything were to go wrong it would affect the current treatment.

Dr. R, my gynecological oncologist from Loma Linda, called and gave his blessing. That felt great….it was so nice of him to call and just let me know he’d read over everything from Dr. L…..and that they talked and agreed on everything.

So Day 1 of EMA-CO was:

E – Etoposide (small bag): This drug attacks cells during various stages of division. Maybe that’s why it makes you lose your hair?
M – Methotrexate (huge bag): I was a little shocked at first at the huge bag of Methotrexate I was given. The dosage was FOUR times what I have been getting the last 8 weeks. This  drug keeps cancer cells from dividing.
A – Actinomycin-D (by injection into IV): Dr. L had to special order this because it isn’t used often. It’s an anti-tumor antibiotic.

Each drug was given one at a time and before they started I was hydrated well and given nausea medicines by IV. They had a hard time getting blood from my finger first thing. I have really long skinny fingers and they just kept turning purple all day. They might put in a port soon but for now the IV is working and I asked them to take it out when I left knowing they’d still have to put it back tomorrow. I just wanted to be free of it all and walk out the door with no contraptions. They’ll find a vein somewhere….

 

“HOW are you going to fit THAT inside of me?”

I was the youngest person there all day….by about 20 years. I sat next to the nicest man who I’ll call Mr. F….we chatted most of the day. He’s battling throat cancer and the chemo isn’t working that well so it was probably his last treatment before he switches to radiation. His friend Mr. S stayed with him  all day and kept me laughing non-stop. Mr. S was kicked out of the infusion area no less than 6 times…..and he always managed to sneak back in to tell some more jokes or stories to someone. I loved every minute of it. I couldn’t stop giggling at a man across the room who was dreaming in expletives……every once in a while it was “f*k this” and “oh sh%t” or “f#kn balls.” O.M.G…..it made my day…..it was better than an SNL skit.

I’ll be honest that it bothered me a little that the word “TOXIC” was written all over this huge bag of neon yellow liquid slowly dripping into my body….no turning back now!

 

 

Gale brought me some food from Cheesecake Factory and I ate as much as I could. Barry came to check on me too. So did my friend Stephanie who works at the cancer center. I started out being freezing but then got warmer and warmer as the day went on until I was just wearing a t-shirt.

 

 

7+ hours total of chemotherapy today. I felt okay throughout….just had to make 5,000 bathroom trips. I wasn’t able to sleep at all and I didn’t get much work done like I wanted to…..my brain felt like it was only working at 70%.

After about 6 hours my brain felt cloudy. I could smell the toxicity coming out of my pores.  Mr. LBB says I smell like fried bologna….I think I smell like what a nuclear reactor would smell like if a goat fell in. He says “how do you know what a nuclear reactor would even smell like.” I have a pretty good imagination when it comes to those kinds of things so I feel pretty confident that’s what I smell like.  I finally got home around 6pm. I was able to eat a little dinner but mainly my joints hurt and my leg muscles don’t feel like they work quite right. I’ve got a massive headache too and I’m just trying to stay hydrated. Mr. LBB says I sound drunk when I talk…..I feel out of it…really foggy…..I guess that’s what they call “chemo brain.” I only speak in 3 word sentences.

The most important thing about Methotrexate is remembering to take my Leucovorin in the morning right on time.  Leucovorin decreases the bad side effects. I joked “Dr L. said if I don’t take it right on  time I will DIE.” The nurses didn’t even crack a smile and said “he’s right, you WILL die if you don’t take it.” They win….way to scare the patient in to following orders! I have every alarm set on my phone since I can’t even remember how old I am or what the year is. Brett went to pick up the prescription at the pharmacy tonight and they said they didn’t have it available. Mr. LBB: Really? That’s the one thing she’ll need or she’ll die. So, they called every Walgreens in town and figured it out after talking to the doctor’s office that they could use smaller doses and I would just take more.

 

 

I think the hardest part of the day was hearing from no less than 10 people: you are TOO young to be in here. And there were the sad smiles when I gave any details of why I was there. I just tried to reassure them that it was okay and it’s God’s plan for me. It IS God’s plan for me. And THAT is why I was excited to be there today for my “chemo marriage.” As Dr. R says: we are bringing in the “bazooka” now. Yahoo.

 

We must not wish for the disappearance of our troubles but for the grace to transform them.

-Simone Weil

This Is ONLY a Test

Hair schmair. I really could care less if I lose my hair. Seriously. It will be pretty awesome to be able to get ready in 5 minutes flat every morning. No one will be able to tell if I’ve showered or not except if I start to smell. Mr. LBB wants to shave his head too…..I said NO WAY. He has to keep his luscious “Bradley Cooper” locks because I have to LOOK at him every day. I’m trying to prepare Boo for the reality that I most likely will lose my hair in the next 2 two weeks. It’s not going so well. If anyone has another technique they think I should use I’m ALL ears.

Me: Look! It isn’t so bad!
Boo: I don’t like it.
Me: Think about how quickly I’ll be able to get ready in the morning. You’ll never have to wait on me again.
Boo: I still don’t like it.

 

Me: Hey, don’t you think it would be really fun to shave my head? I’ll let you do it. You’d be the coolest kid ever!
Boo: I don’t want to be cool! I just want you to keep your hair the way it is.

Me: Mommy is sick and the medicine that is going to help me get better is going to make my hair go away for a little while.
Boo: Well find ANOTHER way to get better!  (in other words…..get a second opinion?!)

Me: Grandma’s hair is really short. You like her hair right?
Boo: Yes, but I like everyone’s hair just the way it is RIGHT now.

Me: Only a few more days until Christmas!

Boo: OH no…..that means your hair is going to go away soon.

I guess it will be traumatic for her right at the beginning but she’ll get used to it. I don’t want her to be scared of me or embarrassed. I think about myself at that age and how embarrassed I’d get of my mother for the littlest things…..it’s not that I was unkind, it’s just that age range when you are just trying to figure out where you fit in. The last thing you want as a kid is a bald mom. 

On another note my boob looks as big as a cantaloupe in this photo! I look like I might topple over….too bad it’s just an illusion and I don’t even fill out an A cup.

I’ve got my little bag packed for tomorrow with some magazines and my laptop. The nurses say that most people try to sleep through their treatment….um, I never sleep. Hello, I’m new here….and I can’t stay still. Oh and I like to document my whole life by Instagram pics so could you snap my photo real quick as you insert that IV? I’m not worried or scared about the IVs, drugs or needles…..I’m worried about getting claustrophobic and restless. I’m the patient that unhooked herself from everything after being rushed to the hospital JUST to get out of there. I’m the patient that tried to negotiate being discharged at 12:30am after being admitted for internal bleeding. Maybe they’ll agree to hook the IV bag to my jacket and I can walk around the hospital grounds……otherwise they might need to sedate me!

I still have a “super cough”….so I’ll spend most of the day trying NOT to cough which will just make me cough more. I had to take pain medicine this morning because I pulled a few muscles where my surgery was just from coughing. Most normal people might have anxiety about having cancer and undergoing chemotherapy…..not me….I just have anxiety about having to sit in a chair for 6 to 8 hours and coughing all over everyone while they sleep peacefully next to me. And how I’m going to get lunch delivered to the infusion center so I don’t starve to death? : )

Happy Monday!


A Santa Nesting Doll (Free Download)

I made this Santa Matryoshka doll image last Christmas for a free download through Facebook and completely forgot about it until I was cleaning up some files on my computer tonight! Click below to download this image to make a few last minute gifts, holiday outfits or thank you notes! I used it last year for a few t-shirts by printing it out on iron-on transfer paper.

My Li’l List: Babysitter Basics

Having a babysitter come over is better than Christmas for Boo……she spends the whole day planning what activities they’ll do and asks every 20 minutes “when is she coming over?”

I’m 34 years old and I worry what our teenage babysitter will think about us: Are we cool parents? Is our kid annoying? Do we have edible food in the pantry? Well, I can breathe a sigh of relief:

Food? 5 out of 5
Please call back? Yes
Sienna? Adorable and cute. 5 out of 5 on the “Angel” scale.

Yesssssss.

 

 

Of course that may be skewed because I probably overpay…..but I’ll do anything for a babysitter to want to come back!

I love this “Babysitter Basics” notepad from Knock Knock. It’s easy to fill out for each sitter and includes all the important information  they might need:

 

Click here to view other items I just love in My Li’l List.

 

Photo of the Day: Outtake

Sometimes family photo shoots can be traumatic……for the parents. I had Lisa snap a few photos of us this afternoon. Boo wanted to wear her Christmas pajamas and I said no…….so we had a little bit of a rocky start. She came around eventually. Later I showed her this photo and she said “awww……that’s soooo cute.” Go figure.

I wore my superhero leggings.

Ribbon Wrapped Headbands (A Tutorial)

To make a few last minute gifts, I made these pretty ribbon wrapped headbands:

 

I used plain plastic headbands purchased from Target and soft satin ribbon. You can also order the plastic headbands from The Soda Pop Shop  here. The Aleene’s Tacky Spray (make sure to use an acid free spray) is used to hold the ribbon in place.

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Activity Radiating From An Atom

I had my PET scan this afternoon. They had to sedate me so I wouldn’t mess it up with my horrible cough. Sedation rocks by the way. I got to sit for 45 minutes with a warm blanket in a “quiet room” as the isotope traveled through my body…..I think it was the best part of my day. As I sat there all I could think about was the radiation symbol on the wall and I wondered how it came about…..I would have googled it but my iphone had no reception. Turns out it is supposed to represent activity radiating from an atom……that makes sense. Anyways, I made it through without coughing until they got to my upper thigh…..then I felt like I was going to pass out from a coughing fit…….a few minutes longer and I would have unstrapped myself and crawled out of the machine.

The radiologist Dr. B came out and talked to us right away and basically there’s more questions than there were before I went in for the scan. BUT, the good part is that now we have a full scan to use as a baseline going forward to compare to. I’ll talk to Dr. L tomorrow to see what he thinks. Here’s what I took away from the meeting (and why I could never be a doctor):

So…I’m still on track for my new treatment (called EMA-CO) on Tuesday. Don’t these ingredients sound lovely: etoposide, methotrexate, actinomycin D, cyclophosphamide, vincristine?

Lisa brought me this nice, warm blanket as a present so I won’t freeze when I’m there next week…..then Diesel promptly claimed it as his own:

 

I’m obsessed with scans…..looking at my body one little layer at a time. The 3-D images I have are hilarious….you can totally tell I was wearing a push up bra because of the shape of my boobs. I’d show you those but I would basically be posting a nude image of myself online. I can only imagine what radiologists see all day…..all different body types, boob sizes, maybe a butt implant here and there. We had some friends over tonight and I had a good time showing them every layer of my body on the computer…..we had no idea what we were looking at……I failed anatomy.

 

Well, off to bed now! Hoping to get a tutorial up tomorrow that I finished yesterday.  That would be awesome.

Photo of the Day: Table for One

The hospital told me I could only eat meat, eggs and cheese this morning and I didn’t have any of those in the refrigerator…….so after I dropped Boo off at school I went to Keedy’s for an omelet and sat by myself at the counter.  I love chatting with the servers and people watching. It’s strangely liberating to eat by yourself at a restaurant. I used to take a newspaper or a book……now I can just sit there and enjoy my meal.

Keedy’s is an old school diner with a well worn counter. When we go as a family we always sit in Miss Debbie’s section because she knows Boo’s special order by heart. Frankie and Froylan are the best and always bring our drinks before we even have a chance to order and they put our refills in to-go cups right before we pay the bill. You can’t beat that. It’s also the last place I saw my dad…..so it holds a special place in my heart!

 

 

If you are ever in Palm Desert, CA make sure you make it to Keedy’s Fountain Grill. Boo is their biggest fan.