Andrea's blog


Cancer Shopping

My Breast Care Navigator told me I'd probably do some "cancer shopping" as I was getting prepared for all of this.  She said she bought all sorts of things when she was diagnosed...including adopting a kitten!  We didn't get another cat (two is plenty), but I did find myself obsessively *needing* a "cancer chair" for our bedroom...along with several other strange purchases.

Why a "cancer chair"? I think because I imagine myself quarantined to my bedroom and I wanted a place to sit other than on the bed.  And I wanted OTHER people to have a normal place to sit with me.  At the time I thought that might be more than just Ben & the kids, but looks like now that won't be the case according to COVID, which is a bummer.  But still, Ayla, Paxton & Ben need a place to sit and hang out with me. 

I wanted a recliner with an ottoman, because I imagined myself sitting it....but clearly there isn't room for a monstrosity like that in our bedroom, so a little swiveling barrel chair became the next best choice.  This may be the first piece of actual furniture we've bought sight-unseen.  But you know...there's nowhere to go SHOPPING for furniture right now!  Everything is closed up for COVID.  So, Wayfair to the rescue.  I think we did ok.  It's comfortable enough, not offensively show-stopping, looks decent in the room, and doesn't take up too much space.  Cancer chair -- check.

That's not the only cancer-prep purchase we've made.  We've resisted having a television in our bedroom for all these years...but it's time.  And well...why not just move the living room TV upstairs, and replace that one with an upgrade?  Yeah, we did.  

It may not BE a vacation suite, but my "cancer suite" is gonna be as luxurious as we can make it...And then maybe I won't have to wear my contacts or glasses to watch TV! hah!

What else do you need to get ready for cancer -- LOTS of water, apparently.  EVERYTHING I've read says to hydrate, hydrate, hydrate.  So my friend Lauren got me "Big Blue", which has become my daily sidekick. And it has encouraging messages for me throughout the I'm all for that!

Then I started doing some head-covering & wig shopping.  That's where my cancer prep shopping stopped feeling like getting ready for a newborn (chairs, comfy bedroom, television, water bottles...all seemed very "getting-ready-for-baby"-esque to me.)  Until fake hair & turbans.  Because that's just weird. But, here we are. 

I ordered these three wigs in a color very close to my own from a local wig shop (that I couldn't actually GO to, because of COVID) and will pick one once they arrive and return the other two (because they ain't cheap)--more details on that process soon, I promise!

And, while I was at it...I tried on a turban.  Boy is this weird.  But in reality -- within a few weeks, this WILL be how I look, and will look for a very very long time.  So I guess I better start getting used to it.

What else do you need for cancer & chemo? Apparently blankets and bags and lip balm and hand lotion, ginger ale, hard candies, popsicles, soft and comfy bras, biotene mouthwash, extra toothbrushes, and silk pillowcases. 

I have many many wonderful friends and family who have been sending me all kinds of things I never knew I'd need, but know I will be so grateful to have along the way.  THANK YOU to everyone who has helped supply me with *all the things*!

When do I get to stop buying practical things and get to stock up on cool sunglasses, hats & earrings instead???  I guess there's plenty of time for that...

Anyone have any other MUST-HAVE for chemo items that I'm forgetting?  


Bandages Off - Port Reveal

So, what's it like recoving from port insertion surgery? 

On the day-of surgery (Friday), I was pretty groggy, but probably still well numbed up, because it wasn't too painful.  That night was rough getting comfortable, but a wedge of pillows & tylenol was helpful.

Saturday I was moving really slow, having trouble with mobility in my right arm and shoulder, and was super tired, taking two tylenol every 5 hours or so.  I opted not to use the "hard stuff" because sometimes those pain killers can make me nauseaus and with tylenol it was definitely tolerable.  

Saturday night, I slept much better, still on Tylenol, and Sunday morning was stiff, but loosened up pretty quickly.  The bandage was still on, and itching me, and the area around it was bruised and tender, but not really painful.  By the end of the day Sunday, I was moving around much more quickly and had much more mobility in my arm and shoulder, and I was able to go without tylenol and slept all night without needing any.  

This morning (Monday) I felt just a little better than yesterday, with lots more energy.  In fact, I spent the day cleaning the house (slowly and mostly with my left arm), and went for a 40 minute walk with Ben.

But then, it was finally time to take the bandage off and see what was under there.  I was starting to itch from the adhesive on the bandage, and my doctor had said I could take it off this morning...I waited until about 3pm.  I think maybe I was nervous about what I'd find.

I feel a little like there's a little alien coming out of my chest.  THAT'S gonna leave a mark!  It's so much bigger and more prominent that I was expecting -- I wouldn't exactly call that quarter-sized. 

I don't love it (who would?), but it didn't feel quite as traumatic as I thought it would.  It is what it is....and this little bugger is going to be MUCH better than having the veins in my arm poked and prodded constantly for the next year.

First physical battle scar of this journey - check.  

I expect it to be a week or two before this thing is totally healed...and that will be about the time I am recovering from my first round of chemo. Maybe I'll be able to get a decent workout in then?  We'll see how that goes...


Port-a-Cath Insertion Surgery

Yesterday was my port-a-cath insertion surgery, and what feels like the beginning of a very long and difficult physical and emotional season.  

The ride to the hospital was rough.  I imagine it's how people feel on their way to check themselves into prison.  When we got into the car the song "Rescue" by Lauren Daigle was playing.  One day I'll go back and read the lyrics more closely and listen to that song and know that it was a well-timed message to me. But at that moment, I couldn't hear it. I tried to listen for a minute and just couldn't take it, so I turned the radio off.

We arrived at the hospital a few minutes earlier than we needed to be there, wearing our homemade COVID masks (thank you Christy Bain)  as requested by the hospital.  

I felt like I was having an out-of-body experience walking in there.  I was totally self-absorbed and was glad there weren't a ton of people everywhere...because even the few in the lobby made me angry. Not because they did anything wrong -- no one did, and in fact we ran into a friend we haven't seen in a long time, who we think very highly of.  I just was angry and felt alone and scared and not wanting to start this process.  Maybe having my face covered with a mask was good.  Then my expression couldn't be seen by everyone else and I didn't have to politely smile.

Once I was registered, we went into the pre-op room, where I had to strip down (including all of my jewelry, which for me makes me feel really "naked" more than anything...isn't that weird?) and put on a paper gown, hair net and grippy socks.  Whoa. This is REAL surgery.  

We weren't sure whether Ben would be allowed back with me, and I'm so glad he was.  We sat in the pre-op room for about 3 hours waiting for the OR to be available, getting my IV, drawing blood, answering questions (3 different people asked me if I'd had a hysterectomy??), but mostly we were just waiting. 

I received several nice texts from friends wishing me well and saying they were thinking about me, but I couldn't read or respond to them genuinely at that moment, because I was still just scared and angry, so mostly I put my phone away and didn't look at it.  Eventually we changed the channel on the TV from HGTV (which I swear is what EVERY doctor's office, hair salon, dentists, etc. ALWAYS has playing -- why???) and found a King of Queens marathon.  That's a show Ben and I love, and it was the perfect comic relief while we waited.

Finally, at about 11:30, the anesthesiologist came in and they started to get me ready to go to the OR.  Ben left at that point and would meet me back in recovery after the surgery.  When the anesthesiologist came in, I pretended he was Jason McKeown (my friend Tiffany's husband) -- even though he was FAR too short to be Jason -- and in a weird way, that made me feel better.  He showed me a saringe and asked me if I wanted something to help me relax.  My answer "Yes, give me whatever you've got." 

The ride on the gurney into the OR was a very eery and scary feeling.  I felt like I was in a scene from a television show.  When we wheeled into the OR, I saw my surgeon, her nurse and the anesthesiologist & his nurse, lots of equipment and lights.  I remember my doctor putting a few blankets over me (it was cold in that room) and then the anesthesiologist giving me a breathing mask.  That's the last thing I remember.

They said I might sleep through the  whole thing, or I might be in and out of consciousness throughout the surgery.  Thankfully I don't remember a thing.  The next thing I knew, he was waking me up and wheeling me back to the post-op area.  I remember asking: 

  • What time is is? (12:50pm)
  • Did everything go ok? (yes)
  • Do I still have the IV? (yes)

They asked me if I remembered anything, and I told them no...and "wouldn't it be nice if I could sleep through the next 8 months too?

They observed me for a few minutes in a post-op bay and did a quick x-ray of my lungs (since she was working pretty close to them during surgery).  My heart rate kept making the machine next to me beep -- it kept going below 50bpm, but no one seemed to concerned about that (and it's not that much lower than my normal 55-65bpm).

Before long, they moved me to a recovery room, where Ben was there waiting for me.  I was able to eat (finally) some peanut butter crackers and Ben had made me a sandwich, and drink a diet coke. 

Then I evaluated my physical status.  Took a look at the bandage, and realized my port was IN, it was bigger than I expected (I kept hearing "quarter sized" and this looks more like a $2 stack of quarters!), and it was sore, but not excruciating.  I mostly just didn't want to move my right arm, though I could...just slowly and gingerly, with less range of motion.

But, step 1 of this cancer trip was complete. 

And in case you were wondering...this is what  the hospital parking lot looks like during COVID quarantine:

Once I was in my own clothes (with all my earrings back in) and back home, I felt quite a bit more normal.  I spent the rest of the afternoon moving very slow, sitting on the patio with Ben, Ayla & Paxton circling around while I stayed still.  Kind of the opposite of normal around here.  

Last night we had leftover Costa's for dinner (thank you Josh & Rachel!) and then the kids and I watched the documentary "Chasing Happiness" about the Jonas Brothers...which we all loved for our own reasons.  It was a good relaxing way to hang out with the kids and do something fun.

I slept *mostly* well, but around 2am got up for more Tylenol and couldn't get comfortable. I kept wanting to stretch my arms and shoulders and back and just couldn't do it.  I ended up making myself a pillow wedge so I could sleep partially sitting up, and that seemed to help for the rest of the night.

I woke up pretty stiff, but I'm slowly doing better, and even managed a shower (though I didn't dare tackle trying to wash my hair -- just putting it in a ponytail felt painful enough).  

I've heard it takes 10-14 days for this port incision to heal...bandages can come off Monday.  Until then, I think I'll be taking it nice and slow.


A (Tentative) Treatment Plan

Let's start with some good news.  I heard from my surgeon yesterday and they have me scheduled to have a port inserted on Friday early AM.  That's great because hopefully we can get that procedure done before any more COVID delays.  However, we've been told a port is particularly important for the chemo I'll be receiving, so it seems to qualify as essential.
Now onto the not-as-good-news.  We also spoke to my medical oncologist yesterday.  He had performed a  MammaPrint test that evaluates potential recurrence  based on 70 DNA factors.  It essentially helps double-check to see if chemo is the right choice for a particular patient's situation.  It helps rank risk and treat appropriately without over-treating. 
We don't have a copy of those results yet (he's going to give us one) but the test did confirm that I am high risk because my breast cancer has basal like cells (among other factors). In short, it's aggressive (which we knew) and thus requires aggressive treatment--early.  A hard-and-fast chemo treatment puts me in the best place long term with my particular strain of cancer.
We had been mostly prepared for this.  After doing quite a bit of digging Ben had a hunch that my cancer perhaps acts more like triple negative, because the ER+ percentage was fairly low.  My surgeon felt that way as well when I saw her last week, and today the medical oncologist confirmed that he suspects that to be the case and will be treating it that way.  That's actually a good thing, even though it requires a more aggressive treatment of neoadjuvent (before surgery) chemo.  I'd hate to NOT get that treatment right away when it's most likely to be effective.  

Research has shown that when triple-negative breast cancer is treated with chemotherapy before surgery — what doctors call neoadjuvant chemotherapy — and there is a pathologic complete response, disease-free survival and overall survival are better.

One way for doctors to judge the effectiveness of neoadjuvant treatment is to look at the tissue removed during surgery to see if any active cancer cells are present. If no active cancer cells are present, doctors call it a “pathologic complete response” or pCR.

Disease-free survival is how long a person lives without the cancer recurring. Overall survival is how long a person lives whether or not the cancer recurs.

So, the plan is that I'll start chemo next Thursday, April 16th, approximately a week after my port is put in.  I'll be on a dose-dense regimen of chemo nicknamed the "red devil", which includes Adriamyacin and Cytoxan for 2 months (4 sessions, 2 weeks apart).  In short, it's the strongest, nastiest form of chemo.  And frankly I'm glad I'm starting with the worst, not having to work up to it!
When that is completed, I'll have surgery #1 to perform a double-mastectomy and expander reconstruction.  Recovery will be about 4-6 weeks for that, and our best guess is that will be in June or July.
Then I'll start a second round of a different type of chemo (Taxol) that will last 3 months (12 sessions, one each week).  During that time I'll also be working on adding volume to those reconstruction expanders.
When that's all over, I'll have surgery #2 for the final silicone implants to be exchanged for the saline expanders to complete my reconstruction.  
The estimated timeline for all of this will be in the October 2020 to December 2020 range before most of the intense stuff subsides and my hair starts to grow back---assuming all goes as planned and on schedule -- which everyone knows is a wish in the wind.
While this is certainly a more difficult form of breast cancer and a longer timeline than any of us wish for, there are some silver linings. 
First, I'm starting soon and we're excited (or thankful at least) about that. 
Second, triple negative breast cancer often responds well to this type of chemo, especially when it's early stage, which is the case with mine.  So we feel that while it's an aggressive treatment plan, it seems it's the right one. 

Third, in our current quarantine world, everyone I know is already practicing how to keep from getting each other sick, which will be particularly important for me as I go through both rounds of chemo.  The kids being "homeschooled" for the next 9 weeks may actually turn out to be a major blessing to avoid bringing home all kinds of illnesses.
So things are underway, which is an answered prayer.  I'm anxious about it all, for sure, but doing my best to prepare myself, the house, my work, and all the other things to really be able to concentrate on my treatment.
Our family and friends have been incredible.  And even though there are so many weird ways that we can't accept normal help right now, people are finding meaningful ways to help us every day already.  
Including these wild socks from Toni & Wendy, which absolutely qualify as "essential".

Meeting with the Surgeon

Today I met with my surgeon.  She comes highly recommended by several people I've talked to, and after meeting her, I feel very comfortable with her.  

After seeing my MRI, she seemed confident that my lymph nodes are not involved, even though we haven't officially received results from my lymph node biopsy.  That will make surgery less complicated, only needing to remove the sentinel node, rather than several lymph nodes.  That's particularly good news for my left arm recovery (which since I'm left handed, is pretty darn important to me).

She also said that the tumor is localized and not invading the chest wall or nipple (sorry...we're talking about breasts here), which is good news for removal, reconstruction, and possibly avoiding radiation.  The tumor also measured slightly smaller in the MRI at 15mm instead of 25mm as reported in the ultrasound. All good things.

While she said I have the option of a lumpectomy or a double-mastectomy, she had two main concerns for recurrence, which might push me toward a double-mastectomy and definitely would warrant having chemo before surgery.  One, she wanted to know whether my BRCA genetic testing was positive, which we don't know yet. And two, she had concerns that because my estrogen receptor "postitive" was weakly positive, which makes her think perhaps my cancer may be acting more like a triple negative cancer instead of an estrogen receptor positive cancer.  Either way, she agreed with my medical oncologist, that because of my age and the grade and size of the tumor, that chemo is the best course of action and ought to be done *before* surgery.

So that gives me plenty of time to decide about a lumpectomy vs. a double-mastectomy (though I'm leaning toward a double-mastectomy w/reconstruction, which is a 3-6 month process in itself - it's not your standard boob job!)  

And then I can tackle one challenge at a time. Chemo is my first battle.  Until we go through a round of chemo and the first surgery, I won't know whether I'll need chemo again or radiation after the surgery.  It will just depend on what they find and how well everything works. 

One of the toughest things I heard today though was that in light of all the COVID virus issues, during chemo I will be significantly immuno-suppressed.  Which means regardless of whether the rest of the world is in quarantine...I will *definitely* be in strict quarantine once my chemo treatment begins.  No in-person socializing, no public events, wear a mask when/if I have to go out...the whole shebang.


That's gonna be rough. 

The next step is to have another meeting with my medical oncologist and see when we can get all of this started.  Maybe I can do it all while the whole world is quarantined!  My FOMO would certainly be relieved if that's the case...


Fear of the Mirror

When I hear "chemo", I immediately think of a bald head, frail muscles and bones, hollow eyes, pale skin, and a tired body. 

I'm scared of the changes to the way my body feels and looks.  It's vanity and it's superficial, but it's still very real. 

So I'm trying to let myself go through the emotions of knowing that my body is about to undergo some major changes--some of them permanent, and letting myself be sad and scared about it before I face and tackle it.  I can't know exactly what side effects and physical changes I'll go through yet, but I know some of what it *can* include, and there's just nothing "pretty" about them.  

After spending the past three years trying to recover from feeling so weak and terrible when I was first diagnosed with Graves Disease, knowing that an even worse wave of physical and emotional challenges is about to hit me is really really really hard for me.  


I like my curly hair.  It's kind of my signature.  It's going to be hard to see it go...and then have to start all over.  

I like being strong and fit and physically capable.  I do burpees for fun.  My workout is my favorite part of every day.  Having muscle and endurance is a big part of what makes me feel confident and resilient.

I like dressing up and accessorizing and wearing high heels when it's not practical.  I don't always dress for comfort -- I like the wow factor, the sparkle and the shine. 

Can you wear heels to chemo? Will I want to? 

I know it's not forever.  I know it's not the end of the world and in the grand scheme, it's a small thing to be doing what I can to be cancer-free.  But when I look at my body in the mirror today, I like what I see, and so I'm scared and sad and angry at what I know is coming.  

I'll do what I can to make the best of it.  I'll rock a fedora and funky earrings with my bald head, and learn makeup tricks to try not to look so pale and hollow.  I might even end up with a fancy and perky new set of ta-tas at the end of all this. 

But getting there is going to be tough.  And I'm not going to pretend it won't affect me.  It will.  It already has.  So today I'm sad about it.  


Axillary Lymph Node Biopsy

First -- I received a phone call this morning from Kristi with my MRI results.  The imaging doesn't indicate any lymph node involvement (GREAT news) or any cancer on the right side or anywhere else they weren't expecting to see it.  It appears we are currently dealing with a localized tumor (also GREAT news). 

But still...we were going to go ahead with the axillary lymph node biopsy just be certain.  So I headed into the hospital for that procedure this morning.  The hospital was even MORE empty this time. We were screened for Coronavirus before being allowed into the hospital.  Ben wasn't allowed to come back with me at all and ended up having to wait in the car.  Things are getting straight other-worldly out there!

I had the same team of nurses & doctor from my first biopsy, and the process (while slow) went fine.  It's awkward and a little uncomfortable, but not painful. And I was able to watch on the ultrasound the entire time so I could see what they were doing and what the lymph node looked like.

This time of course they all KNEW I have cancer (and they knew *I* knew) so they were much more forthcoming about what they were seeing.  Or maybe I asked better questions.  In any case, we all knew I was now an *actual* cancer patient.

Based on what they saw on the ultrasound of my lymph node and the information from my MRI results, the doctor said he thought it was very likely the biopsy results would show no cancer cells.  

So we're hoping that's true. 

I have an appointment with a surgeon on Wednesday when I hope to have more information about the order of events and severity of the surgery portion of the process.


Contrast MRI

My bilateral contrast MRI was this morning.  That means I got to go to a nearly empty hospital (bizarre) and get an IV of dye (had to be stuck twice to get it right) and take a really really loud 25 minute nap on the weirdest massage table (without a massage) ever. 

None of it was painful or even that uncomfortable, but that dye going through my veins was crazy strange --it feels COLD. 

I'm hopeful the images they get will tell us more about whether my cancer has reached any lymph nodes or not...and hopefully it hasn't!



Telling People

Telling people that I have breast cancer, before it's obvious that I do, is a strange and surreal feeling.  Because *I* don't totally believe it yet.  But I decided early on I want to be open and forthcoming about it. I wanted people to be comfortable asking me questions, and feel as un-awkward about interacting with me as possible.  I know what it's like to feel like you don't want to upset or offend someone by bringing up a sensitive subject, and I don't want people to NOT talk to me because they don't know how to interact with me.  

So here's my disclaimer: 

If you're curious, ask me about it. Talk to me about it.  I don't mind, and that lets me know you care about me.   And if I'm not in the mood to talk about it, I'll let you know.  And we can talk about it later.  Deal?

I started with calling all of our family -- my parents & siblings.  Then a handful of close friends, both local and all over the country.  Then we told Ayla and Paxton, which we were nervous about, but which went well.  Then church friends, and co-workers, and bible study groups...the circle widened.  

Each time I told a new person or group of people, I was so thankful that I had done it.  While everyone had slightly different responses and reactions that matched their own personalities and life experiences, they were ALL so kind and caring, heartbroken for me and offered unconditional support and assistance in any way they could. Some people cried.  Many people were speechless and shocked. Everyone was genuine.  I have never felt so loved by so many people in my entire life.  

Because our world is so physically separated right now with the coronavirus quarantine, I've only been able to tell Ayla & Paxton in person.  Ben told his parents in person.  But everyone else has been over the phone or through a text message.  While the text messaging method isn't always *right* for something like this, it did mean that I was able to keep a written record of how so many of my people responded--and for the scrapbooker/journaler in me that is a priceless keepsake for me to have.  

What's really weird about all of this happening with a backdrop of a worldwide pandemic is that other than my immediate family, I have not (and probably won't) receive a hug from anyone else, maybe in months.  That's all kinds of strange, and a little sad. 

Instead of hugs, I guess I'm getting gifts! 

Little treats keep showing up on my doorstep from my friends and family. 

Things to cheer us up, things that will be helpful down the road, and things that are just plain silly and "extra" because -- well, it's for me -- and I'm a little extra sometimes. :) 

I don't think I really ever fully realized how wonderful my tribe is.  


What are we dealing with?

Ben came with me to my meeting with Kristi and the medical oncologist this morning.  We left the kids at home in quarantine and braved the outside world (that's really how it felt) and took ourselves to the hospital.   Signs everywhere warning you to wash your hands, not to enter if you're feeling sick, people trying their best to stand far away from each other.  That was the first time I'd been out since the previous Friday afternoon, and my anxiety was definitely elevated and I was overstimulated with everything around me.

Kristi is wonderful.   She's kind and assuring, and gave us all kinds of great information and I believe she will be an advocate for me to get the best care I can possibly get.  She is also going through breast cancer herself and recently had a lumpectomy and is about to begin her own radiation treatment.  So most of what she described sounded like a surgery & radiation treatment plan--a few months.  Not great news of course, but not too terrible either, and definitely treatable and beatable.

She administered the BRCA gene mutation blood test as soon as we got there, but unfortunately we won't have results from that for a few weeks.  

Then (after an eery parking lot waiting room and coronavirus temperature and questionnairre screening before we were allowed into the building) we met with the medical oncologist in the Cancer Center, who talked more specifically about MY tumor and situation.  While he too, was very kind and gave us detailed information that was almost all brand new to us...he seemed much more concerned about my situation than anyone had up to this point. 

He used words like "I worry" and "I'm concerned" in regard to my age (young), the tumor size (2.5cm) and the growth grade of the tumor (grade 3). 

He also dropped the chemo bomb.  Which I was not expecting.  And which immediately sent my body into a fearful panicky feeling.

He said because of those factors, he wanted to kill the seed, not just pull the weed (he had a long lawn care analogy to go with his recommendation that resonated perfectly with Ben).  Surgery could remove the tumor (weed), but if the seed (cancer cells) were out there where you couldn't see them and you didn't kill them, you'd end up with more cancer in other places later on.  Particularly if the BRCA genetic test came back positive, and particularly because I am only 40, which leaves a lot more time left in my life for recurrence. 

He didn't care whether I chose a lumpectomy or a mastectomy.  That was up to me.  But he wanted to kill the cancer cells with chemo -- probably before surgery ever happened.  The surgery & radiation treatment plan I'd been expecting went from 2-3 months to the better part of a year, plus all the chemo side-effects no one wants to experience.

Then he started talking lymph nodes.  I have an axillary lymph node under my left arm that feels like a little pea-sized knob.  It's been there as long as I can remember. But since he could feel it, he wanted to have it biopsied to see if the cancer had spread to my lymph nodes.  Until he had that information, he said he couldn't stage the cancer.   And lymph node involvement would mean a more difficult surgery, higher risk of lymphedema (which I learned more about later and is frankly more scary to me than chemo--because it's permanent and would affect my dominant arm).

After that, we were essentially sent on our way with an appointment for an MRI & a lymph node biopsy & a meeting with a surgeon for within the next week and a half.

And now, I have a new reading companion, the Breast Cancer Treatment Handbook (which is VERY informative and a must-have if you are ever diagnosed) and a very long journey ahead of me that I wasn't expecting at all.


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