It’s In The Details

Things are happening over here! Well, kind of. I’m still hurrying up to wait here at the hospital, but at least the components have been put into motion.

Let me explain. In list form, it’s my favourite way. Lots of text ahead. If the details don’t interest you, feel free to skim.

1. After getting my diagnosis on Tuesday, I met with my oncologist on Wednesday. A really smart guy who I quite literally trust with my life. An important quality in an oncologist. He reiterated my diagnosis – Stage 2 Hodgkins Lymphoma.

What that means, is that it’s cancer in my lymphatic system in two or more areas of my body (chest, bottom of throat, under arms), but isolated above my pancreas. There are subtypes of Hodgkins but I don’t know what I am. My oncologist did describe there being “desirable” and “non-desirable” types in terms of treatment, and mine is the latter. That’s because I have a cancerous mass taking up more than one-third of my chest, so it’s slightly more aggressive.

2. Treatment for Hodgkins is pretty standard across the board, and mine will be no different – ABVD chemotherapy to shrink the tumour, followed by radiation to completely zap it. ABVD just refers to the initials of each chemical that I will be injected with. Because of the size of the mass, I will get a slightly larger dose.

3. Apparently there have been a couple recent studies showing that Hodgkins is responsive to fewer doses of chemotherapy, reducing the chances of long term side effects in younger people. Because of this, my oncologist hasn’t set out a long term chemotherapy plan for me yet. I’ll start with 4 chemo sessions every other week, for a total of eight weeks. From there I will have a PET scan which will show how the cancer is responding to treatment, and we’ll determine if I’m good for four or eight more weeks after that.

4. Chemotherapy, for those who don’t know, just involves me sitting in a chair hooked up to an IV filled with the drugs for a few hours. This is the part that actually scares me the most right now, because I won’t have a PICC line inserted to give direct access to my veins. An IV is supposed to burn going in!

5. On top of the chemo, I will also be taking anti-nausea medication (he mentioned Zofran) and an injection to keep my white blood cell count up (and in turn, my immune system). The injection could be every day, or once a week, and I’ll have to give it to myself.

6. The side effects are pretty standard:
– Thinning of the hair, which will probably start within weeks of beginning treatment
– Numbness or tingling in my fingers and toes
– Metallic taste in my mouth
– Nausea
– Weakened immune system
– Early menopause/infertility
– Lung poisoning
– Heart disease

I’m probably missing some. The first few side-effects will either be a breeze or awful. I’ll take that as it comes. My oncologist is at least taking the last few side-effects very seriously, especially because I’m young and have to live with the risk of long term side effects for a long time.

Because of the weakened immune system, I’ll be at a higher risk for infections. This is very serious, because I’ll be in a state where even a small infection could kill me. Also, I’ll have to keep an eye on my lungs (coughing, shortness of breath) and may get regular pulmonary function tests.

7. I won’t have any food restrictions!! So long as my immune system stays okay, otherwise further down the road I may have to stay away from fruits and vegetables because of bacteria/pesticides.

8. I didn’t quite understand this before, but I understand it now – the cancer is putting me at a risk for blood clots because it is growing and squeezing the veins in my upper body. The blood thinners make it so my blood is thin enough to still make it through the veins without clotting.

9. The risk of clotting is why I’m not getting a PICC line right away. It’s also why I’m still in hospital and everyone wants to keep a close eye on me. It’s actually the scariest part of this whole thing. I didn’t get it before, but I sure as hell get it now – blood clots are no joke!

10. I’m still being treated for clots with a blood thinner (heparin) through an IV. The doctors don’t know how long I will be on this until my cancer gets small enough to safely take me off of it. The more popular oral blood thinner, Coumadin, apparently doesn’t react well with chemo and is not an option. When I eventually, if ever, get released, I will have to give myself injections of lower dose blood thinners into my stomach until I’m in the clear.

Scary.

11. There’s been talk of keeping me in hospital for an additional 2-4 weeks. At least for my first chemo treatment to see how I react, and possibly for my second (what would be considered my first “round” of chemo – I know, it’s confusing). They also want to make sure I’m at a lower risk of clotting before they set me free.

Aaaaand I think that is it! Hopefully all that information didn’t put you to sleep. A lot of people have been asking for specifics so it’s nice to finally be able to give them. Like I said, I’m meeting with a radiologist in the next couple days who will make her recommendations for radiology, which will also influence the chemotherapy some. I honestly still don’t know much about radiology, so it will be nice to know what to expect from that. Some people react worse to the side effects of radiology than chemotherapy. Thankfully, I won’t have to worry about that for a few more months!

If you have any questions or want clarifications, ask away. I’ll answer what I can. As much as this next step scares me (and believe me, I’m no warrior, I’m really friggin’ scared) I’m happy to at least be moving in the right direction. Making decisions and taking steps that will work toward getting this cancer out of me.

Oh, and meeting with the radiologist means another trip to another hospital within the city! A brief escape!

Tomorrow’s post will have less words, more pictures, promise.

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Posted on July 13, 2011, in Cancer and tagged , , , . Bookmark the permalink. 69 Comments.

  1. I don’t comment often but I just wanted to say how amazing you are. There are no other words.
    Wishing you positivity, strength and healing from one Canuck to another.

  2. Thanks for keeping us updated with all of the details Susan. I’m pretty sure I’m not the only one who is learning a lot from your posts. When I’ve had cancer in my family I was far too young to have anyone explain anything to me, so this is all new information.

    So it sounds like if the first couple of treatments go well you can do the others at home? That sounds like it would be a lot more comfortable – I hope it works out that way!

  3. Blood clots are very much no joke. They are scary, scary little things…
    I’m glad you have the details now- even though they can be scary I know I would feel better at least knowing what is going on.

    Happy Thursday!

  4. I’m glad to hear you have some more concrete information now, and thanks for sharing, I like knowing. I’m posting my auction item this morning :)

  5. Sending prayers and Reiki your way Susan! Blessings to you dear one. Stay strong and BELIEVE that you will get past this!

  6. Give us word, please! Don’t edit on our behalf; say what you need and want to say. ;-)

    I’m a hands-on healer (Reiki Master with additional, Shamanic abilities) who can also facilitate remote healing. I’m offering complimentary, complementary support through this process. No strings attached. All I require is your permission. Please e-mail me if you wish to discuss this option.

    Blessings to you and your family!

  7. greensandjeans

    So glad you are starting to get some real answers and a plan of attack! Everything seems much more scary when it falls in the “unknown” category!

  8. Wow you are amazing and brave!
    I found this post really informative and I feel I learnt from it, thank you for writing it.
    If you ever want us to stop asking questions just tell us to shut up :)

  9. Praying for you! Sounds like you have an awesome team of doctors ready to rock and roll and kick this cancer’s butt!!! :)

  10. Wishing you all the best and thinking of you!

    Thanks for the update, I’m so glad you finally know (a bit more) about whats going on and how to finish off the cancer!

  11. Needles are no fun and very Scary I will agree with that! I was diagnosed with MS about 5.5 years ago… since that day I have had to give myself a needle once a week. My legs look like pin cushions, my husband laugh at them. I still find it a challenge some days but I always think to myself – this is helping me and it’s better than having to go to the hospital or Dr.’s office. Thanks for being so open with your posts I am learning a lot. Smile the Sun is shinning in NB today :)

  12. I’ve known plenty of people with cancer, but never really knew the specifics of what went on. My mother had breast cancer twice and my uncle had colon cancer. I guess I was always afraid to know what exactly went on? Reading your list just really got to me…It’s truly an eye-opener.

    I’m always thinking of you Susan!!

  13. Hi Susan,

    Just to let you know that at least one person (me!!) across the ocean, in Portugal the tip of Europe, is also wishing you the best and follows every victory that you acomplish with great joy.

    Thank you for sharing these battles, its truly an inspiration.

    Love,
    Joana

  14. wow…i really hope you be okay. i kinda have an idea of what you just listed because i work in a hospital and seen people who has undergone chemotherapy. I hope you find the strength that you need to go through with everything. God bless you. :)

  15. As a canadian blogger i found your site quickly and have followed along but this is the first time i’ve commented
    Your posts are just so inspiring, insightful and informative
    Warrior or not, we are all here supporting you :)

  16. I have been a long time reader, but never commented on here — but this post certainly pulled me out of the rafters to post :)
    First off, I believe you are incredibly strong and I admire the way you are handling this … truly. I work in oncology, and I never fail to be impressed by my patients and their strength and resilience. You do have a long road in front of you, but you can come out on the other side — I see it happen all the time. It is so wonderful to see people gain their life back after this illness.
    Anyway – I am a radiation therapist, so obviously, I do the radiation part of treatment. I am not the doctor, but the person who sees the patients daily and gives them their treatment. From what I have heard from almost all of my patients, is that radiation is nothing once you have been through chemo. Yes, there are side effects to radiation, but it only effects the exact area of the treatment field and nothing else – whereas chemo is systemic and effects your entire body. In other words, I am hoping to calm your fears a little about radiation. It is a BIG machine and you have to lie very still and often masks are made to hold your head in the same place day after day if the head or neck is involved in the treatment field, but the treatment itself is pretty short daily. I say it averages 10-20 minutes.
    Right then. Thank you for being brave enough to write out your story … and I hope you continue to write throughout this process. I am sure you are helping a lot of people.
    Keeping you in my thoughts!!!

    • You definitely just eased my fears a little! My uncle had radiation for a brain tumour that made him really sick, so that’s the only thing I keep hearing about it. But I am different and radiation to my chest (around my heart actually) may not be so bad! Thanks for the pep talk :)

    • I will agree with yogini here at least according to my dad’s situation- he had radiation to the neck for a growth that was the size of a grapefruit- he never had any problems and in fact insisted upon driving himself there- it was a total non-biggie. He didn’t get burning or any malaise or anything like that. I know that Eden feels that her dad was wiped more than his version of chemo, but again- that’s a different location and a different cancer. Just my 2cents.

      • And Eden’s dad has the same cancer as the uncle I mentioned, so that makes sense. I am not worrying about it now. Too many other things happening before it to worry about! :P

  17. A friend of mine was diagnosed with Hodgkins at 24, about 3-4 years ago. This brings it all back, and I remember her going through this too. She had her own blog (google ‘chemopalooza’ to find it easily!) and documented it there too. She is now a couple of years clean from cancer and is doing great. I wish the very same for you.

  18. Thanks for sharing what your experiencing and for all the information. I never really knew what everything meant or what treatment looked like. I’m sending happy healthy vibes! Stay strong, and positive knowing we are all here “virtually” holding your hand :)

  19. Thank you for sharing all of this. Honestly, it’s made me realize how little I really know about cancer and treatment and it’s incredibly eye opening.

  20. Blood clots are pretty scary! I know it has to suck to be stuck in the hospital but I guess in this case it is good to be monitored closely! Hopefully you won’t have too many bad effects from the chemo and radiation! Thanks for the informative updates!

  21. Similar to my sis who just commented (Jobo), I am having the same memories of our friend and am sending the same positive vibes your way that I did hers. I can’t remember what stage she was in when she was diagnosed but I think it was around the same as yours and she was about your age (maybe a year or so younger) than you. I know you say you’re really scared but you are handling this with poise and strength and I really admire that in you.

  22. Thank you for the specifics, I understand your fear. My gosh who wouldn’t be afraid. It is going to be ok though, believe in that. I took zofran for 2 of my pregancies, it was a life saver, I was misserably sick and it helped so much.

  23. Susan,
    Just wanted to let you know I read daily and send positive thoughts. Just from the short amount of time I “spend” with you I know you’re strong, level headed and courageous so you will kick this cancer’s ass.

  24. Hi Susan!
    First off, I want to let you know that you are in my thoughts and prayers. I am looking forward to your long road of SUCCESS!
    Secondly, I am very thankful for all the information you are giving us! I am completely unaware of anything Hodgkins and very thankful for all the info! I know it sounds crazy, but being aware and informed is almost comforting to me.
    Finally, I just wanted to let you know that this weekend I am walking in the Relay for Life– a 24 hour relay that raises money for the American Cancer Association. Last night I donated a luminary to you! I’ll be sure to send you a picture of it :) And be sure to walk an extra 10 or 50 laps for you!!!

    thank you for a being a true inspriation!

    http://main.acsevents.org/site/TR/RelayForLife/RFLFY11CA?px=13842370&pg=personal&fr_id=31332

    • Yesyes! Get a picture if you can! That is so sweet. I’ve been walking laps around the hospital every day, glad to know someone else out there is walking with me too :)

  25. I found your blog in a roundabout way and I hope you don’t mind a new friend. [I came from Janetha via Bizzy]

    I can see from reading your blog and all the comments that you are such a lovely and very strong woman. I am truly sorry that this has happened but I am wishing you the best – I just know you are going to beat this!!!

    [Do you know – I have been blogging for 7 years and suddenly I find myself unable to write a coherent comment, sorry.]

    Sending you good thoughts. Take care.

  26. Thank you for the details – blood clots are definitely scary but I’m glad they are being cautious and monitoring you for everything. It’s also really great that you have a good, trustworthy doctor – they are so rare but once you find one, hold on to them!

  27. Thanks for all the details! It is scary, but you can do this:) Also, if you get really bad side effects, you could always try acupuncture. It works really well for cancer patients doing chemo and radiation. It can alleviate the nausea/vomiting and keep your body as strong as it can be and increase your immune system function! I highly suggest you try it:) Let me know if you have any questions!

    • Not sure if the doctors will let me be voluntarily poked by needles while I’m still on blood thinners ;) Will keep it in mind though!

      • I think acupuncture needles are WAYYY tinier (like way smaller than a sewing needle) than the ones you’ll be using to inject the Neupogen (in case your white blood cells drop) or the blood thinner. And it’s true- acupuncture is said to help a lot. Of course you’d ok anything with your docs. :-)

  28. Glad to hear you have your diagnosis and that you are staying strong and positive!

    Re: self-injected blood thinners: I had to take those forever (and am taking them on and off this summer since I’ve been on a lot of long train/plane trips), and I remember being so scared. I was like, “how the heck can I possibly stick a needle in myself every day??!?!” BUT it is so easy and almost entirely painless. It feels like a tiny little prick. That’s it. I promise. The needle might look a little bit big, but it isn’t bad at all (and I used to be very needle phobic — I almost attacked the nurse in the hospital who tried to give me my first dose of heparin). Mine was Lovenox, which is a type of heparin. I don’t know if yours will be the same, but trust me, it isn’t too scary after the first day.

    You can do this Susan!

    • Gaaaah, thank you for easing my fears. My mom just said she could give me the needle, but she didn’t sound very confident when she said it, so I think I may be better off on my own :P I *think* Lovenox may be the stuff they put me on, if it’s just a lower weight version of heparin. I had a big lifetime aversion to needles coming into the hospital, and I think it’s sloooowly going away with the multiple daily blood tests. Well, maybe ;)

    • I hope you don’t mind me riding on everyone else’s comments, but I was going to bring these things up anyway: My Dad used to be very squeamish and scurred of these things- needles/self injection seemed as remote as a health blogger eating Cheetos, but honestly, he got SOOOoo good at it. At first, I gave him the shots as I have so much experience with needles. Then I went on a trip and he had to give it to himself. Then when I came back, he told me he was totally fine to do it and it wasn’t a biggie at all! MY DAD!!! MR SQUEAMISH!!!!! You totally can do that. Better you than mom if she’s iffy (although really, if she needs to, she can do it and get good just like my dad!). Crap, now I have a craving for Cheetos.

      • I too used to be on Lovenox (I’ve since switched to coumadin) for a clotting problem and though giving yourself shots certainly isn’t fun, it’s totally do-able, just like Caronae said. If I can do it, you totally can!

  29. so happy to hear things are becoming more clear and you know how to proceed; i know that that in of itself can be quite relieving.

  30. You did a GREAT job of explaining everything (sadly, I am all too familiar with almost all of it). It’s so good that you are teaching other people about this.

    My only other question is about the fertility. I have heard of women getting some of their eggs harvested and frozen just in case the chemo wipes out their ability to conceive naturally. I know that it’s probably way in the back of your mind, but do remember that you will go on to lead a fabulous life and that will likely involve a hubby and perhaps kids if you so choose. So it’s not outside the realm of crazy to think very seriously about this. That’s my 2cents again. I think I’m up to about a dime by now :-)

    Love you.

    • PS. Many women who have had chemo DO go on to conceive naturally!!! I didn’t want to imply otherwise! No panic is needed at all…But as a known risk, it’s something that you might want to have a chat with your doc about. :-)

    • Yup, I’ve given the fertility thing a thought. My oncologist isn’t too worried about it, he says it doesn’t happen often with people doing my treatment (not to say I won’t be in that small minority who is effected, it’s always a possibility). But freezing eggs is expensive and I’ve read that “makin babies” from frozen eggs isn’t a sure thing. In my personal cost-benefit analysis of the whole thing, I’ve decided against it :)

  31. I’ve been thinking about you non-stop, Susan. I can only imagine how terrifying this has all been and how uncertain things feel but am REALLY glad that stuff is finally starting to shape up into a ‘plan of action’…if you are anything like me, having all the information is definitely necessary and the past 3 weeks must have been torturous. I really admire how you are facing this head-on and doing so much research/taking it all in and trying to make sense of something that just doesn’t make sense. Hang tight, woman…you’ve got this. That cancer doesn’t know who it’s messing with x

  32. I did all the same exact things you are talking about, ABVD, radiation, neulasta, PET scans, CT scans, etc etc . Drink LOTS of water when u are getting the chemotherapy, keep flushing your system out! Plus it makes your belly feel better! Also, I had a port put in too save my veins!!! Def worth it! Prayers to u and ur family!

  33. I did all the same exact things you are talking about, ABVD, radiation, neulasta, PET scans, CT scans, etc etc . Drink LOTS of water when u are getting the chemotherapy, keep flushing your system out! Plus it makes your belly feel better! Also, I had a port put in too save my veins!!! Def worth it! Prayers to u and ur family!

    P.s. I was diagnosed at age 21 and was married @ 22, and I’m blessed w 2 healthy children! A five and three year old

  34. Thanks for the details, Susan! I think having everything written down will be great down the line (once you’ve kicked this sucker) to look at all you overcame! I’m so happy you won’t have food restrictions- I’m sure that’ll make a HUGE difference in how you feel. Keeping you in my prayers as always. :)

  35. It sounds like you are as informed as you can be, without being too informed…if that makes sense.
    And hooray for eating what you want! So long hospital food!!
    It sounds like your team of doctors really know what’s going on. I imagine that, combined with being informed as you are can provide a little comfort.
    Thanks for sharing all of this with us, Susan :)

  36. A lot of the research I did when working in dermatology was actually about the skin side effects of cancer treatments such as chemo, radiation, and targeted therapies that all can effect the skin, hair, and nails. I’m not trying to make you scared about MORE side effects, just giving you a heads up & some info to read! So, here’s a couple of links for you:

    1) Chemocare has great info about the type of side effects you may experience. It all depends on the kind of chemo & radiation. http://www.chemocare.com/managing/skin_reactions.asp
    2) There are a few companies that make products specifically for people going through cancer treatments, such as Lindi Skin http://www.lindiskin.com/ While I wouldn’t say you necessarily need their products, it’s a good idea to treat any dry skin, etc early, before it becomes painful and hard to relieve.
    3) Ask for a dermatologist to get involved if it’s becoming an issue at all. There’s a ton of research in the field that’s been published lately, so even if they’re not an expert on cancer side effects, they should be able to help pretty well.

    Good luck getting started on treatment!!! :)

    • All great information, thank you Sara! I’m definitely in the group of the more I know the better :) I’ve heard about getting dry mouth throughout chemo, but I didn’t consider dry skin. I must get more vigilant about moisturizing!

  37. Susan – your strength is so amazingly inspiring – each post you write brings a tear to my eye. As a registered nurse I am very familiar with all that you have written – I know we don’t know each other but if you ever need anything, want to chat, or want a care package sent from Toronto – I’m here for you :) xoxo
    Sending you sooo much strength!!

  38. Hi Susan,

    I never comment but always read you and just wanted to say that you’re in my whole family’s prayers and that we’re sending as much positivity as we can. You’re being so strong, brave and positive, I really admire how you’re dealing with it.

  39. Hey Susan!

    I don’t know if you remember me; it’s Anne from Harping on Fitness from like, a year ago. I discontinued my blog but every so often I check my google reader. I read some of your main archive posts and I can’t believe everything that you’ve been through! You are so amazingly strong and brave. I know you can beat this thing! You’re in my thoughts and prayers <3

  40. I have read about you on other blogs – this blog community is amazing! My mom passed from a rare form of cancer so I did understand the cancer drug lingo…

    All I can say is I send tons of HUGS & lots of thoughts for a recovery! I found this site very helpful when my mom was sick. There are groups for each type of cancer & the people are amazing – first hand from people that have the disease:

    http://www.acor.org/

    http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?A0=HODGKINS

    Jody

  41. ittybitsofbalance

    You seem extremely strong and I totally admire you for that. Thank you for being an inspiration to me and other readers.
    Please keep us posted!

  42. As overwhelming as this all sounds, it must be just a little relieving to have some answers and direction. You are stronger than you realize Susan. We are all with you on this! :) Sending you so much love and prayer always.

  43. You really are quite amazing. With everything you’re going through, you blog about it and share your feelings with all of this. My heart goes out to you. I really admire you and I thank you for enlightening all of us and explaining how all this works. Stay strong! Hugs!

  44. So, a little info for you. I have had a lot of people in my family though chemo, so here are some things I can remember.
    Keep ice in your mouth when you are doing chemo. Your taste buds go to shit through chemo and this helps, just be ready to hate food one day and love it the next. Always have someone on call to get you food you can eat-literally you will go from day to day with food you love and hate. It is weird.
    When your hair thins, shave it. It will grow back thicker and better. I personally would rock the bald look, but wigs are always an easy option.
    A few other things, but during chemo if you get nauseous-put a cold rag on your neck.

  45. boring? never boring. We’re inspired by your strength susan. I wish I could be by your side during this time, but at least I can know whats going on through your blog. Praying for you during this time.

  46. Just came across you blog, read about your fundraiser on http://www.findingradiance.com Sorry you are going through this.

    Sending positive thoughts your way from Ontario!

  47. Arrggghh…please disregard the typo in my previous post.

  48. Glad to hear the update and to read your thoughts as you’re processing, Susan. Certainly not boring – what an adjustment and change to be moving through. And AVBD! Just like Mikey had…find what works for you! We noticed that so many people told us different things (“Stock up on hot dogs – I CRAVED them during chemo!” – he craved NO hot dogs, lol!) and I know if you stick with how you’re feeling, what works for you and the support of your family and friends you will do well. :) Continuing to pray!

  49. You are so brave, so strong, and I admire you for having the energy to blog about this. You are truly an inspiration and I am praying for you. I wish I could send you something; would I be able to? I’m not sure if you feel comfortable posting your address on your blog, but please e-mail me at mallory.thomas@trincoll.edu if you could. I would love to…

  50. Susan,
    I hate that I’m so familar about neaerly anything chemo related. Please text, call, email, whatever if you need someone to talk too about all this that “speaks chemo”. My dad is/was on Zofran and it generally worked. His appetite was not hot, but he never vomitted or anything like that. I know the chemo my dad has is different, but I’ve been at the the oncology ward everyday for six weeks when he got radiation treatments.
    not to be cliche, but everything will be alright.

  51. my friend had lymphoma, is now healthy and has since had 2 babies. So don’t be discouraged!

  52. I also am just kicking hodgkin’s and I went through the exact same treatment they are recommending for you. I finished 2 rounds (4 treatments) of chemo about a month ago. Just had my first radiation treatment today and I’m already back at work, good as can be. It was very quick and they only did 2 different “sections” for me. On my neck and some in my chest. When I was first diagnosed, the doctor thought I’d be doing 6 months of chemo with no radiation and almost everyone I talked to told me to just do chemo. I was very, very hesitant about the radiation in the beginning. Turns out I definitley think it was the right decision to forego any more chemo and finish up with 2 weeks of radiation. I’m 24 and healthy otherwise and the chemo wasn’t too bad for me. But it was always on the 3rd 4th and 5th day that were pretty terrible for me. I never threw up but I just felt on the verge all day and was extremely tired. I still worked full time but my employers were very very understanding when I need to take a day or 2 off. Most of the time the only food that sounded good to me was smoothies and fruit. I strongly recommend the protein drink Myoplex. Chocolate was by far my favorite flavor, very tasty,always seemed to go down very easy. My hair didn’t even start falling out until my third treatment, it’s very thin now and still falling out even a month after, but I think it’s slowing down and there are no patches missing. I didn’t even get to wear my beautiful wig ;) I wish the best for you as I’m sure you’ll beat this too:) Life is good! Take care Susan

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