Mamas Surviving Cancer - Mothering Forums

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Old 01-26-2005, 05:53 PM - Thread Starter
 
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I thought I'd start a thread for those of us mamas who have either survived cancer or are currently fighting it! Why don't we tell a little bit about ourselves first...?

Okay, since I'm the only one here...I'll go first!

I was misdiagnosed in September 1998 with Cat Scratch Fever after discovering a swollen lymph node in my neck. When, after two months the lump didn't go away, the doctor recommended that I just let it be (he told me that removing it would leave a scar that boys wouldn't like in bathing suits... : ). As it turned out, it's a very good thing I had it removed! I was diagnosed in December (right before my 17th birthday)with stage IIB Hodgkins Lymphoma (Nodular Sclerosing).

I participated in a clinical trial at Stanford (actually Lucile Packard Salter which is the children's hospital there). This included 4 cycles(two rounds per cycle) of chemo (V.A.M.P. Vinblastine, Adriamyacin, Methotrexate & Prednisone) along with 25RADs of radiation. I had every complication in the book and due to blown veins/neuropathy/heart issues wound up with first, a Picc Line and then a Hickman Catheter in my chest. I went into remission on 6.23.99 and just this past summer was pronounced "cured!"

I have had lots of quality of life issues in the years following treatment, among them: nausea, hypothyroidism, depression, fatigue, being underweight... THEN...suprise! My husband and I found ourselves pregnant in May of 2003. We didn't think we'd be able to have children necessarily. I have NEVER felt better than when I was pregnant. I started eating like a normal person (and gained 55 pounds 40 of which I have lost thanks to breastfeeding! ) and have felt all around great! This is the first time in 6+ years I have felt relatively normal...

Um, I am very active with the LLS and have run two full marathons and a half marathon with TNT. I have been an honoree for the Southbay Chapter for five years and LOVE it.
So, enough about me : (though please feel free to ask me ANY questions (YES, I did lose my pubic hair during chemo! )); tell me about you!
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Old 01-27-2005, 08:46 PM
 
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I was diagnosed with cervical cancer 16 years ago after the birth of my third child. I had cyrosurgery and have remained cancer-free.

: Grandmother , 3 Adult Sons

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Old 01-28-2005, 10:43 AM
 
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I was dx with IIIB Hodgkins in 1997 and had 6 months of ADVB chemo. I've been in remission since 1998. I should be dx cured this year.
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Old 01-28-2005, 09:47 PM
 
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I was diagnosed with malignant melanoma 20 years ago at age 23. Very very scary. I have a lovely long scar at the base of my neck - I just tell people that where my second head was, and I had it removed. I have undergone full body checks twice a year since then. No fun, but I like to stay alive. I have had recurring skin cancer (last year had a big one removed) but thankfully no more melanoma. Can't get insurance either, or if they offer it the premiums are sky high. Every check-up is a nightmare, especially when they remove something. I freak out and wonder if it's the end. It makes me hate my skin, and that's why I got a tattoo when I was 35 - to decorate my skin and give it something happy looking (I have a seahorse on my hip).
Living in SW FL doesn't help - the people worship the sun here, and tourists come down and bake themselves in the sun. I want to scream "don't you know what you're doing to yourself? Have a look at my scars!" I've had some scars compared to cigarette burns - like I did it to myself.
I lost my best friend at 38 after a 7-year battle with breast cancer. She left behind a 12yo DD. I just want to keep on plugging away and see my kids grow up.
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Old 01-29-2005, 03:37 AM - Thread Starter
 
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Quote:
Originally Posted by shanleysmama
I just tell people that where my second head was, and I had it removed.
:LOL Glad to know I'm not the only one that likes to mess with people regarding cancer...its weird, when I first got diagnosed I didn't think I'd ever be able to laugh about it. Boy, did that change fast. You've really gotta keep your sense of humor...in cancer and in parenting too I guess!

I also understand about the checkups...they can be draining in and of themselves. Thanks for sharing your story.
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Old 01-29-2005, 11:21 PM
 
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lol shanleymama! i too have a scar only its right in the middle of my throat. after my daughter my second child was born i had a "nodule" removed.they removed my whole thyroid as well so now i take synthroid every morning. i desperately wanted to breastfeed so i delayed the radiation. now my daughter is almost four and i still havent had a body scan or radiation. i am moving towards a macrobiotic lifestyle. i believe we all have at least some measure of control over our health. uh oh poopy diaper. chow!

Happiness despite misery is a great victory, I think...

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Old 02-19-2005, 11:33 PM
 
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I am late geting here..sorry..I have no time at the pc hardly any more...

I have been dx with Hodgkin's 3B.
I was diagnosed right before Christmas this past year, and had to abruptly wean my DD, who was only 4.5 months old at the time.

I have had great strides in my chemo as my last CT scan shows the lymphoma has melted away to scar tissue...we hope...and we will be doing a PET scan once I am done with my treatments to verify just that.

Right now I am dealing with chest pain from the tumor I had behind my lungs, but other than that I still have my hair and I have my kids to keep me focused on life.

I hope to re-lactate once I am done to give DD what I was able to give her brother thru nursing. I hate the stupid bottles and formula It is such a pain....having a bad day today about that whole issue...otherwise I try to keep in mind this is for my life..to be here for dd forever.

So that is it for me.....

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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Old 02-21-2005, 06:43 PM - Thread Starter
 
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Traci, it's wonderful to hear that you are responding well to treatment. Is your Hodgkin's Bulky? Nodular Sclerosing? I had NS and I don't remember having chest pain, though the majority of my tumors were in my chest...Are they planning radiation for you as well?

I am so sorry to hear that you had to wean your daughter, but obviously you had no choice. I cannot imagine what it must be like to be going through treatment with small children. And here I thought it was bad just trying to graduate highschool...

Please keep us posted when you can; come and vent if you feel like it too. I am sure most of us can understand (to some degree at least) what you are going through.
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Old 02-21-2005, 07:12 PM
 
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Gosh Celeste..you know... I do not know if I have bulky or NS ..I have never heard either of the words from my doc. I know he kept telling me in the beginning that the lymhp nodes were huge, so did that qualify for bulky?
No radiation as far as I know....guess I do not ask enough questions, eh?...

I guess the more I do not have to *think/talk* about the whole thing the better...denial?...I don't think so ..just my way of keeping me centered.

Thanks so much for your kind words.....

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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Old 02-23-2005, 03:02 AM - Thread Starter
 
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Traci...I did the opposite. I researched (and continue to research) everything. I submerged myself in my treatment and it made it very difficult for me to come out the other end. (I still very much identify myself as a cancer patient/survivor). The hospital was my home, my doctors and nurses were my family and then it was gone *poof*. It was the oddest sort of letdown. But then...I wasn't yet married and didn't have kids.

The moral is (and yes there is one): do whatever it is that keeps you centered!

Keep on keepin' on mama.
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Old 03-09-2005, 08:41 PM - Thread Starter
 
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Traci,

How you doing? You still hanging in there? I hope everything is going well for you. I'm thinking of you! And by the way, June is is wonderful month to finish treatment/go into remission! June 1999 for me!
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Old 03-10-2005, 01:05 AM
 
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Celeste..
I am so glad you posted to the thread again. I tried to find it the other day and had no luck and I lost the link in my user CP....
That is soo cool you have been in remission since June 1999...I am soo happy for you!!! I cannot wait to say the same!! We just made reservations to go to the ocean for vacation in July yesterday, so, I cannot wait to celebrate being done with chemo in a warm sunny place.

I just went back and re-read your OP and I was wondering if you can tell me why the docs had you go thru radiation?
I plan on asking the doc this Friday if it is on the agenda for me....so far he has said nothing about it.
And what about getting your picc line out? Is this the same thing as a port? I am also counting the days to get my port out as it is in my upper left chest and drives me crazy! The car seatbelt rubs it, my purse hits it, dd bangs it with her head...it is just a nusiance!

I am doing well just getting *bored* or a bit anxious with the rest of my treatment time.
I am longing to nurse my dd .....
I have recently just found another mother like me who will be done with treatment a month after me and is hoping ot re-lactate as well! This makes me so happy to have someone to share with.
I am going to LLL next month for conference and will be attending a re-lacatation session to get all I need to know in preparation for my turn.

So other than that just trying to avoid the germs as poor dh has bronchitis again and looking for spring to be here soon to clear out all the yuck-o bugs.

Thanks so much for your support...

Free To Be~
Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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Old 03-10-2005, 04:14 PM
 
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Aren't ports awful? My doc that put mine in didn't prescribe me any pain meds afterwards and it hurt like heck. My oncologist did the next day, which was nice. On my last treatment, they couldn't access the port so they did an x-ray, turns out the catheter part of it broke off and was in my heart!!! Not to totally freak you out, it was a rare freak thing, and they had to go fish it out. I'm prone to rare freak things (can you say less than 1% chance that my lump was cancer? No cancer in the family? Argh!).
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Old 03-10-2005, 05:05 PM
 
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Ohmigosh Owensmom
That is awful that happened!
I have to have my chemo nurses freeze me up before they stick me due to the hospital nurses trying to access my port the day after I had it put in. They could not get the needle in and kept squeezing the area to *hold* the port while they tried to get it in...it was the most awful pain I have ever experienced in my life.

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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Old 03-10-2005, 08:47 PM
 
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I know! You'd think they'd put it in and give it a chance to heal before they try to access it... they did mine the day before my first chemo too. As if you don't feel crappy enough, you also get to recover from minor surgery!

I'm glad I had it though, they had to access my veins only once and it took forever! My veins suck!
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Old 03-11-2005, 12:55 AM - Thread Starter
 
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Quote:
Originally Posted by Solange
I was wondering if you can tell me why the docs had you go thru radiation?
I participated in a clinical trial (that included radiation) which is now becoming protocol for pediatric Hodgkin's. From my understanding (and I've written a few college papers on the subject ) a chemo/radiation combo is pretty standard nowadays. Clinical studies have shown these treatments to have very high cure rates. If you want any more info, I have it readily available.

Quote:
Originally Posted by Solange
And what about getting your picc line out? Is this the same thing as a port? I
A PICC line is placed in the arm and looks like this . I actually only had mine for a few days and started having major heart problems because the tube was dangling into my heart. SO...then I got my Hickman Catheter which was also external and hung outta my chest (and looked like this). It had to be flushed with an anti-clotting fluid daily and cleaned around the place where it went into my skin. I actually loved it because it meant no more needle pokes or blown veins. Now if I had a baby to pull on the lumens that woulda been a whole different story!
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Old 03-11-2005, 05:38 AM
 
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Thanks for inviting me Celeste...

My story is: diagnosed late 2000, stage two, three surgeries, tubes tubes tubes, YUK, brachytherapy, less three lymph nodes and a lump, a smaller boob & here I sit.

Conceived the twins two months after the all clear (?!?!). They still nurse.
If it wasn't for that amazing soulmate/nurse/hairbrusher known as Jeff, I don't know how the hell I could have done it. My three year mark is actually a month away, but I love the way it looks.

Celeste found me when I was whining about the breast cancer ribbon vanishing from the smilies lol

I am the first recorded woman in my family to have cancer, we have lost many men...

Glad to meet you all, my thoughts of hope and health are with you always

Maya
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Old 03-11-2005, 05:27 PM - Thread Starter
 
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Maya,

I'm so glad you joined us. We're a small group but it's been nice having a place to chat.

It's wonderful your twins are still nursing. I was equally amazed to have conceived...in fact, we were TTA ( ) but didn't know that we'd ever be able to have one.

I too was the first in the family to have cancer...though my grandpa subsequently died of prostate cancer at age 90.

Again, welcome and hope to see you around here.
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Old 03-11-2005, 06:49 PM
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Quote:
Originally Posted by shanleysmama
I was diagnosed with malignant melanoma 20 years ago at age 23. Very very scary. I just want to keep on plugging away and see my kids grow up.
I know what you mean, Melanie. My dr. removed a severely dysplastic mole last summer. It was in the very early stages of turning into a melanoma. I suppose some paths might have called it one. Anyway, I also for twice yearly checkups--have actually been doing that for 8 years when another derm removed some dysplastic moles that weren't as bad.

I think of the sun as my enemy now---hate to say that--it looks like my DS is fair like me so I slather us both in sunblock and we wear big floppy hats.

Like you, all I care about is being here to see him grow up. It is SO scary to think of not being there for your kids. It haunts me. I suppose I am something of a hypochondriac but then again it makes sure I get to all my docs for check ups and I am aggressive about getting the treatment I feel is best.

One positive thing--by getting those frequent check ups you are bound to have anything caught early and likely curable. Does your doc do body mapping? Mine doesn't. I have so many moles and freckles I wish she did!

She is awesome, though. I switched to her because my old doc did an exam in like one min. She is so thorough and looks EVERYWHERE.

Good luck with your next checkup!
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Old 03-13-2005, 08:11 AM
 
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I was diagnosed with breast cancer on Thursday. I was still nursing my 14 mo dd. Thank you owensmom for your question & experience with weaning your ds. It was helpful for me.

I haven't nursed dd since around noon on Friday. I had a ct & the contrast drugs are counterindicated. I'm still not sure if it is kinder to my daughter to just be done, or not since I will need to wean her very rapidly (week--maybe two). I'm concerning that nursing her now will just be confusing to her.

I appreciate you all participating in this thread!
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Old 03-13-2005, 02:22 PM
 
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I had to quit because of that test too, and then I had about a week and a half until chemo started, but it seemed like it would be horrible for him to have to stop for 4 days, start up for a week, then stop again.

I think weaning was THE hardest part of this. Well, and then my decision to have a double mastectomy and the knowledge that if I had a future kid, I couldn't breastfeed. I hope your dd is doing well... I was surprised at how well Owen did, but it was still hard for a few days.

I assume you will start chemo soon? I was brave going in, and they gave me drugs during that made me sleep through most of it. I thought it was sooooooooo weird, it was a huge room with tons of easy chairs and people laying their with IV's getting chemo. I cried the whole way home, pent up emotion or whatever.

Gotta run now.

s to everyone!
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Old 03-13-2005, 04:30 PM
 
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I'm not sure what the order of my treatment will be. Because it has spread to at least one lymph node, I expect chemo and radiation, just not sure what or when yet.

The one positive thing about having the ct is that everything else looks clear. I was really worried about that.

She clearly wants to be nursing, but is much better than I expected. It is nice to know that there is more to mommy than the booby. I am still able to comfort & love her. She still plays and has fun.

I feel at a loss for words. I want to comfort and love you all & am not sure how to say it....
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Old 03-13-2005, 08:50 PM - Thread Starter
 
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auntieM,

While I'm sorry it was necessary for you to join this thread, I'm happy you found us.

Please let me know if you need support of any kind. I am a good researcher when it comes to these things...and a good listener.
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Old 03-13-2005, 09:15 PM
 
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One thing I want to say is don't listen to how other people felt, or third hand anectodes. I had so many people say "I had a friend that went through this and they were never sick and were able to work and only took 2 days off!" Everyone has a different body, different treatments, different cancer, etc. It drove me nuts being made to feel that I wasn't having the "right" chemo reactions or whatever. Just focus on yourself and your babe and whatever else brings you joy.

On that note, I want to say I was AMAZED how run down I felt. I'd carry ds from the car to the house and my legs were ready to give out climbing two stairs. I run up the stairs now and think back at how much chemo obliterated me!

My doctors liked to push any drug on me that might help a side effect. I had hot flashes, and my oncologist wanted me to take Effexor, which is an antidepressant. I know someone that went on it and although it is a milder one, it definately screws with you. My doc made it sound like it would be no big deal to just take it for a while, then quit, when it really should be taken with care. I found that kind of irresponsible. Another doc wanted me to take Bextra to help my vicodin work better after surgery. Well, I beleive that is one of the arthritis drugs recently taken off the market. Gee, thanks.
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Old 03-14-2005, 12:53 AM
 
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I think people want to make us feel better with their stories of other's experiences, but your right, it's not always helpful.

I'm kind of struggling now with how much to commit myself to. For instance, dd & I have really enjoyed a music class. I'd like to enroll again, but am not sure if it will be too overwhelming, or something to look forward to.

On a positive note, I'm part of a local mommies group & they have all been very supportive with offers of help.

I'm sure that as I have more info, I'll have more questions for you all.

Thank you for your advice & support!
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Old 03-14-2005, 02:35 AM
 
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I keep rereading this thread and sending out all the healing energy I can muster....

Maya
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Old 03-16-2005, 09:05 PM
 
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Oh man, I was listening to Fresh Air today, and they were talking to Gene Wilder. He talked about Gilda Radner and her fight with stage 4 ovarian cancer. 6 weeks before she died she was taking singing lessons, and the song she wanted to learn was When You Wish Upon a Star. I was bawling. Then apparently he had non-hodgkins lymphoma, the most scary kind, and he is now cancer free. He said the difference between their chemo treatments (she died in 1989, he was diagosed in 2000) was remarkable. He had extremely aggressive chemo, but had great drugs (zofran) so he was never nauseous. He said Gilda suffered a lot from the chemo. He just wrote a memoir....

Anyway, it was an interesting interview, and so sweet, I just love him, and it made me cry to hear him talk about Gilda...
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Old 03-17-2005, 03:12 AM - Thread Starter
 
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Wow, that interview sounds neat. I'll have to see if I can find it on the internet...

On a side note: Zofran is an amazing drug. It really helped me to avoid throwing up though I was extremely nauseated for 13 of the 14 days in between chemos.
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Old 03-17-2005, 10:33 PM
 
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I am here reading and also sending healing prayers and strength to you all....
I will try to type more soon.....feeling better today after my treatment Last Friday..so Celeste..IKWYM about Zofran...I have something else they prescribe me like it, but thanks to chemo brains, I cannot for the life of me think of what it is nor have the energy to go upstairs and look......LOL....ahhh the joys of chemo.....

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Traci
"Living is learning and when kids are living fully and energetically and happily they are learning a lot, even if we don't always know what it is."
~John Holt 

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Old 03-18-2005, 04:25 AM - Thread Starter
 
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Traci...I know what you mean about chemo brain. Unfortunately for me it spelled long term learning disorders...WELL, it didn't prevent me from graduating from college yesterday!

Incredibly, what worked best for my nausea (even better than Zofran) was Benedryl. They gave it to me through IV while I was getting my chemo (which for me was an all day affair because of all the complications I had ) and then my mom would dose me at home with the OTC liquid. It worked well...for me at least.
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