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!


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.

The Cancer Chronicles

Well, the new treatment is scheduled. I start Tuesday. Merry Christmas to me!  I’ll be at the infusion center all day….the hardest part will be keeping me there haha. It’s hard to keep me still! Tomorrow I have a PET scan. I think we are going to schedule another CT of my brain soon too…..I’ve had a gnarly headache today.

I look in the mirror and think: I should shave my head soon before the hair falls out…..this is the one time I could go all “GI Jane” on my head and no one would think I was nuts.

 

I got some energy back this afternoon and I decided to make some kung pao chicken. I’m trying to gain a little weight before next week!

 

I’ve never asked “why me”….instead I’ll be glad it’s me. My mother said she wishes she could carry the cancer for me……that’s how I feel…..I’m glad I can carry it. It could be my child or my husband or another family member or friend. I’m tough. It will take a lot for it to bring me down. Maybe I’m meant to have this so I can share the whole experience and help others through it……the Donut Chronicles will take a short break for The Cancer Chronicles. I can blog Tuesday from the Infusion Center…..maybe it will keep me in my chair!

The Cancer Chronicles via lilblueboo.com

Choriocarcinoma

I had new scans yesterday and this afternoon my family and I met with Dr. L, my new oncologist.  The scans show that some spots that were previously on my lungs have gotten smaller but a few new ones have shown up. There’s also a new 4cm tumor in my pelvis area (near where the old one was that was removed with my hysterectomy). The area on my liver hasn’t changed.

Dr. L wants me to start on a much more aggressive chemo regimen known as EMA/CO as soon as possible.  I’m also doing a PET scan this week so they can try to get some more information about my liver. Dr. L is certain that my cancer is  Choriocarcinoma and I’m stage 4 Gestational Trophoblastic Disease….the good news is that the rate is about 80 to 90% survival as long as it’s treated early enough. There will be a plan of attack by the beginning of next week. I’ll count my blessings: I have a treatable form of cancer and I have friends and family to rely on throughout!

Boo made me a “shot” advent calendar last night: Mommy, every time you have to go and get a shot you cut one of these strips off with scissors okay? I’ll just tape this to the back of your door.

I love her little tired smile:

 

 

A quick note to my friends and family: I will not be sending Christmas cards this year……..haha.

Well, I’m exhausted today….so off to bed. I’m on my 7th week of current chemo and it seems to wipe me out a little more each time. I’m not scared for what lies ahead just a little anxious to get it behind me! Anyways, thanks for reading! Love to you all….

XOXO,

Ash

 

P.S. We got a HUGE box of CHOOSE JOY bracelets delivered today!

 

Photo of the Day: Yep, it’s me.

I felt famous for a short while this morning. I replied to a comment on the blog and she wrote back “Is this THE Ashley?” Hahahaha. So I took a webcam photo with a time stamp and sent it back for proof “yep, it’s me.” Thank you Evelyn for brightening up my day with that. Yep, it’s me writing back unless you see “Lisa” written at the end which means I’m so far behind on email that the LBB Inbox alert system has reached DEFCON 1 and Lisa, my loyal assistant, has taken over.

It’s impossible for me to respond to every comment but I do try to select a large amount to respond to every day. I read each and every one….and I love recognizing your names for those that comment regularly.  I imagine you sitting across town or thousands of miles away taking the time to say something. Please always include your website address because I love seeing where you are located and a little about you! You KNOW I love memoirs….and blogging is pretty similar.

 

 

I had a few inquiries recently asking if my boobs were getting bigger. Um, no……but thanks for asking (or noticing?). With chemo my bra is just getting emptier. I DO happen to have a really super great padded bra that has about 2 inches of dead air space behind it now.  If I poke it, it goes inwards. It will be a great party trick over the holidays.

I’m feeling really good this morning…..sitting on the couch and catching up on computer work. Hoping I’ll have energy to finish a tutorial this afternoon. I was referred to a new oncologist that I’m seeing this afternoon so I’ll have someone local to see now along with my treks to Loma Linda. Excited about that. New MRIs and CT scans are still being scheduled…..so nothing new on that front. Seriously, I am just baffled sometimes at how long it takes to get things done and worked out. I have a ton of doctors involved so I know things get really diluted and messy……maybe Dr. D that I’m seeing today will help that.

 

*****

 

My friend Jenny that I’ve written about recently passed away last night. Please pray for her family and friends during this hard time….that they find peace and comfort that she is free of pain and in God’s hands. I found out right after I’d finished watching the footage of my father and it was so comforting to think that he’s there welcoming her and that she might be looking for him too.

Show me, O LORD, my life’s end and the number of my days; let me know how fleeting is my life. -Psalm 39.4

 

One of my favorite sayings is “There’s only one of ME, in all time.” THAT is amazing. There is only one Jenny Swett. Only one Norman Swenson. Only one of YOU…..in ALL time!

My sister wrote on her personal FB page last night: My dad’s final words to us were “Live the Life You’ve Dreamed” and “Choose Joy.” Its ironic that the final messages he left us, all have the same theme about life. It makes me want to take back every negative word I’ve ever let come out of my mouth. It makes me want to choose my words wisely and not miss one single opportunity to find joy or help someone else find joy!

“Your words and thoughts which you think the most, will inevitably be the ones you believe and unavoidably move towards. They will become the things and events of your life!”

Today I will be…..

….Iron Man (or Iron Girl I guess). Gicela made me these jeggings as a joke but I actually love them. I will be a superhero today if I complete one task: make it to Costco…..it’s only 5 miles away but it seems like 100.  It’s all relative. Compared to how I felt yesterday, today I am Samson. I’m going to wear my jeggings too.

Cram THAT up your cramhole Cancer!

 

I didn’t even have to spin the “Spin-spiration” wheel….Boo puts it on Iron Man every morning anyways.

The Traveling Shirt

It was a morning full of doctor visits….three to be exact. A self portrait with my go-go-gadget arm:

 

 

After chemo first thing I had a visit with my regular doctor. It was humorous in the waiting room because the visitors there aren’t used to seeing someone with a mask. Everyone treated me like I had ebola…..and sat accordingly. I might wear a mask for the rest of my life….everywhere I go….if I can get THAT much personal space:

 

My sister sent me this shirt to wear……it’s her “sisterhood of the traveling shirt” t-shirt…..like the movie, her and her friends have passed it back and forth since 2006 and written milestones on it. I get to write on it now and send it back:

 

 

Since I get intramuscular injections….it takes longer for the chemo to absorb into the bloodstream so I usually have a few hours before I start to feel it. It’s like a race for me……fit in whatever I can right afterwards. Today I stopped at the thrift store on my way home to see what furniture they had in:

 

Once I got home I was able to do a little bit of work sorting out some fabric scraps before I started feeling crummy…..then I had to lay down until tonight. I’ve got to take a few days off now before I can work on my new project of moving into the new office area. I’ve got big plans for it: pretty repainted furniture, a chandelier, larger desk areas for Lisa and I and a project table. The old office will become a writing nook for me and playroom combo for Boo…..it seems like a ton of work right now but it will get done eventually!

 

 

My HCG levels are moving in the right direction….just too slow….so somethings up…..the MRI scans this week will tell us more! For now I’ll just be patient and work on my Li’l Journal Project and design some new dresses from my lair of rest : )

 

Don’t forget! Choose Joy!

XOXO,

Ash

The Journey

I don’t know why I chose to write all this down last night…I guess it chose me. Sometimes I can’t stop it from pouring out…..so much so I kind of just type frantically so I can get it all out before it disappears into thin air **poof**. I was thinking about a conversation that Gale (my MIL) and I had on the drive to Loma Linda Friday about the night I went into surgery 6 weeks ago. She was telling me about the phone conversation when my FIL Barry called her (when I should have been coming OUT of surgery):

Barry: It isn’t good. They are doing an emergency hysterectomy right now.
Gale: What?! So she won’t be able to have a baby?
Barry: Gale, they are working……to save her life.

Every time I think about that conversation I get the wind knocked out of me a little.  You know, that feeling like you feel like you might cry but it’s just like a big gasp for air? I can’t believe how much I took for granted as I went in…..almost like I was invincible…..and how much trust I had put in those doctors. I remember being rolled into the OR and the radio was on.  They had been waiting on the confirmation of my blood type and I was saying “oh please, like you would ever need blood.” I just took it all so lightly. They put a mask on my face and it was like a game to me: yeah right, they can’t get me to fall asleep…..3, 2…..(lights out). What I wouldn’t give to be a fly on the wall when all that changed. I wonder what the doctors said when they realized I was bleeding uncontrollably…..was it “oh sh@t” or was it a calm “we have a change of plans.” I keep meaning to ask Dr. R that.  Will this be a story they recount in the OR from time to time? “Remember that young girl we operated on with the crazy tumor who almost bled to death? And she thought she was going to Olive Garden right after surgery? Ha….if only she knew.”



I often think: what if I hadn’t made it through? My family and friends don’t like to talk about that…..but I talk about it all the time. It’s only natural to think about  it. I think about who would have read my diaries first. I think about how I should have cleaned out my underwear drawer….you KNOW you ALL have that “last resort” underwear that you hope no one ever sees. I think how easy death would have been for me…..I would have never even known really. And I think about how devastating it would have been for my family. I probably would have opened my eyes and my dad would be standing there welcoming me to heaven. That wouldn’t have been so bad…..that’s why I’m not scared of dying. However, I live for my loved ones……and I really love being here: I want my mother to have a daughter, I want my siblings to have a sister, I want my husband to have a wife….and most of all I want Boo to have a mother.

I imagine my dad talking to God saying “here’s the deal…..you don’t want her here yet….first of all, she’s going to be super mad….second of all, you’ll want to send her back for a while, I guarantee it……and she’ll tell ALL your heavenly secrets…..on her blog.”


I cry a lot in the shower or when I’m driving by myself. It all comes flooding out. But it’s never a sad or scared cry…..it’s an overwhelming emotional cry. Many times I find myself saying “thank you God, thank you” and I feel like my heart is going to cave in.

Gale said in the car: you’re different now. you seem happier than you’ve ever been before.

I DO feel happier.
I feel lighter.
I see the bigger picture.

Someone wrote me the other day saying that my journey has been helping with their anxiety. I had to write back: “I wasn’t always like this.” I feel like I’m leaving out a huge part of the story. I struggled with a lot of things in my early 20s. I had severe anxiety and panic attacks. I’ve struggled with ADHD and social anxiety. I have very addictive tendencies and I was very aloof about them. It took me a long time to unlearn a lot of things.  But I wouldn’t change a thing……I know everyone says that…but it’s true…..I tell myself: anyone who is the least bit interesting has a past. I could write a very colorful memoir…..although I’m not sure I’m ready for my mother to read it yet. I only wish I knew back then what I know now: that life doesn’t have to be as hard as we make it.



The one big turning point for me in my life (before all of this current stuff) is when I learned to embrace “the dark side”…..and I did that through journaling. Journaling became my life for a few years (you can see some of them here). I would be on a corporate jet with clients and I had no problem pulling out my journal and crayons to write down a quote or something I wanted to remember. I glued bits and pieces of my life into notebooks trying to sort things out and figure out who I was. I turned sadness, anxiety, insecurity, and anger into a creative process. I collected questions, random facts, quotes, people, words, receipts, websites, photos and drawings.  I didn’t write in order. I skipped pages. If I didn’t feel like writing I would just draw a map of where I was or write down what I had for lunch.

Among other things, you’ll find that you’re not the first person who was ever confused and frightened and even sickened by human behavior. You’re by no means alone on that score, you’ll be excited and stimulated to know. Many, many men have been just as troubled morally and spiritually as you are right now. Happily, some of them kept records of their troubles. You’ll learn from them — if you want to. Just as someday, if you have something to offer, someone will learn something from you. It’s a beautiful reciprocal arrangement. And it isn’t education. It’s history. It’s poetry. – Catcher in the Rye

I slowly became less anxious, I stopped worrying about what other people thought about me. I spoke up and welcomed the consequences. I became more compassionate and I sought out people that were real and interesting. I cut ties with people who were toxic. I became obsessed with memoirs and movies and when I connected with something in them, I wrote it down.  I read all of Sylvia Plath’s journals and underlined so much I might as well have underlined every word.  I met Johnny Cash in a dream. I went to see a Dolly Parton concert.

Have I lost you yet?



 

“I never travel without my diary. One should always have something sensational to read in the train.” -Oscar Wilde

I read every John Steinbeck book and cried when I read the last one because he’s dead and wouldn’t be able to write another one. It was so final. I made lists of memories from when I was younger. I interviewed my grandparents and wrote down their stories. I spoke up at work and soon realized I didn’t belong there. My manager and assigned mentor asked me to “please attach an Advil” when I emailed him.

“I’m fine. I just threw up in my mouth a bit.” -from the movie Dodgeball

I re-evaluated my life and quit my job. Brett and I moved to California and I found out I was pregnant…….and then, just like that:

I never wrote in a journal again.

It just ended. I can’t explain it  but that’s how it happened. Of course I’m skimming over the story but this post would be 400 chapters long if I kept going. But maybe that’s the whole point…..maybe I’m not supposed to leave out parts of the story and that’s why this type of post has chosen me. I guess…. we’ll see.

“When you look back on your life, it looks as though it were a plot, but when you are in it, it’s a mess: just one surprise after another. then, later, you see it was perfect.” -Schopenhauer.

****

And then I think of my new friend Jenny. I’ve only known her for a short time….I met her through her mother Debby and we’ve only chatted through email. But I know I met her for a reason and I know she’s already had a huge impact on my life. I think about her all day long and wonder why we met….when God is going to take her home so soon. Two days ago she made a point to tell me “sure it’s short, but at least we got to know each other, and for some reason we are supposed to know each other.” And then…just like that…..she’s no longer able to physically email. I wonder how she’s feeling. And then I wonder if we have similar handwriting.  I wonder what her drawings look like (she’s an artist). If anything could make me lose faith it would be this….but I won’t. I think of my dad greeting her in heaven and how welcome he’ll make her feel. He’ll know we had a connection.

“I by no means have given up on life, I still have days ahead of me but they are different. The life that I am living here are coming to an end and I am still enjoying what breaths I have left in my body up until that place where Steve Jobs kept saying “Wow”. I have accepted the life I was given, I have learned to cherish what wonderful things that have come my way and share it with others.” -Jenny Swett

*****

Out of all of this……I have a new project I am starting:

The Li’l Journal Project

I’ll be mailing journals all over the world one-by-one to random people…..if you get one all you have to do is complete one page….in any way you like. You can add a quote, write a letter, draw something, paint something, paste a photo, insert a leaf inside, embroider a page, staple your business card to it etc. Then you pass it on to someone else. As people receive them they can share it on the Facebook page…..and I’ll share some on the blog too. You can read about those before you. It will be fun to track the travels of each journal. Once they fill up there will be an address to send it back to so we can scan in pages to share.

I hope that the journals will become thick and worn and full of history. I hope that those who randomly get them can learn something from the people before them.

 

Journal 1 will go to Jenny and her family since she’s my inspiration:

 


 

The rest of the journals will be mailed all over the place. I need some addresses overseas so if you are overseas and would like to start one let me know through the contact form your address….I’ll choose from random. (we have have been flooded with addresses, thank you all so much for your interest! We will choose from the list we have now, thank you!) I’ll start with five of them this week and add more slowly as we go. I’ll post more soon about the whole project soon. XOXO, Ashley

Suspicious Activity

Went to Loma Linda today for another checkup with Dr. R. My mother-in-law Gale went with me…..I call her my “scribe” because she always asks all the good questions and remembers every little detail. Every time I step into a doctor’s office I get “white coat syndrome”: I start sweating (my eyebrows start first), my blood pressure goes through the roof and I forget everything I was supposed to ask (even if I wrote it down) and I don’t hear much of anything. So…I either need a scribe or a tape recorder….but a tape recorder wouldn’t be my advocate like Gale is! I have Gale repeat stuff back to me when the doctor leaves the room and I scrawl it down so I don’t forget…..and she seriously sounds like a tape recorder….she remembers it word-for-word…..this is my secret “how annoying that I have to write this stuff down” handwriting that no one is ever supposed to see:

 

 

So, my HCG levels aren’t coming down as fast as they should be. Apparently they should be down in the hundreds by now…..and they are still around the 2,000 range.

Dr. R had another radiologist take a look at my MRI scans and he said my liver looks suspicious for metastases. I love that they use the word “suspicious” as a medical term……it sounds very suspicious in itself. The high levels might be due to the cancer on my liver…..that it’s too dense and may need radiation. Anyways, early next week I’ll have another more in depth MRI focusing just on my liver….that will tell us more. They can’t do a biopsy because the liver would bleed and lord knows I don’t want to lose any more body parts!

When we first got to the doctor’s office the nurse asked when my last pap smear was:

Me: 2009, I think.
Her and Gale: 2009?!?
Me: Um, yes….my favorite doctor retired and I didn’t feel comfortable going to anyone else yet. Anyways, I’m not sure why this is relevant….they just removed my cervix. There’s no more “pap” to “smear”.

There was a little concern about my weight loss. Oh, apparently I should have told my primary care physician that I have cancer. Who knew? I told Dr. R. “I can only see one doctor at a time…..don’t you feel lucky?” They win, I have an appt with Dr. Y on Monday right after my chemotherapy. “Hi Dr. Y….I haven’t seen you in a year, here’s a stack of medical files just in case I need you.” That was a hilarious call with the appointment desk:

Appointment desk: And why are you coming in?
Me: Oh, I just want to chat with Dr. Y and update her on how I’ve been doing lately.

After Loma Linda, we drove a little farther down the 10 to visit Gale’s nephew Cole who was flown last night from Hawaii to a rehabilitation facility in California. It just worked out perfectly that we got to see him. Cole was in a very bad car wreck in Hawaii a few weeks ago. Cole has a long road ahead of him and we are praying for a full recovery. I know the flight was so hard on him and his mom and Mark. He opened his eyes when we were there though and looked straight at us! I could see him in there…..I truly think it will be just a matter of time before he is responding more and more. Any prayers that were coming my way……please, please send them to Cole. Dear God, I won’t ask for anything else, just please heal Cole.

We passed this place on the way to see Cole…..I think my long lost twin may own it (and it has a drive through). Maybe “she” will relocate to Palm Desert:

 

 

Right now I’m addicted to these Dare Maple Leaf cookies that my hubby’s office neighbor Kim gave us. Brett brought them home and said you have to try these….they are the best cookies ever. I was skeptical….because I do eat a LOT of cookies. But seriously, they might be the best cookies ever. Now I just have to find where to buy them. I have to ration the box so it will last longer.  Let me know if you see them in a store so I don’t have to buy them online!

 

 

I’m resting now after a long day……and watching Real Housewives reruns…..my favorite line of all time: “Who’s gonna check me Boo?” from Atlanta’s Sheree.

Who’s gonna check me Boo?

I just like saying that.

 

XOXO,

Ash

P.S. The Choose Joy bracelets sold out but we ordered many more!  I’ll let you know when they are back in the shop. Check out the Choose Joy page if you haven’t had a chance yet. Have a great weekend!

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