The Notes of a Cancerous Girl. December 2014

Friday – Tuesday, November 28- December 2, 2014

I started the last weekend of November with another round of chemotherapy – my 3rd cycle. I was staying again in 10th Central, but my room, unlike on all other occasions was by the door and not the window. Everything went according to plan, Rituxan was given first (with no side effects), then four 24- hour bags (luckily, 2 last bags were speeded up to the rate of 55 ml/h) and the very last 1-hour bag. This cycle took only 95 continuous hours of chemo.

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By now, I am also quite familiar with the chemo protocol. I come to the 10th floor of the NY Presbyterian hospital, nurses put me into a ward, supply me with all necessary things: robe, hospital pants, socks, paper cups and plastic pitcher, napkins and paper tissues, a branded NY Presbyterian kit with lotions, shampoo and conditioner that I can’t use anyway, special body wash and shampoo, which I must use while in the hospital, two mouthwashes – Biotene and Magic mouthwash. After I am settled, my nurse (which has another 3 patients) comes to access my double power port and installs catheters in each of them (one to administer chemo and another to draw blood). Then, s/he draws blood for test and a few hours later and 30 minutes before “hanging” the first bag (Rituxan), I am given, Zofran,  Tylenol and Benadryl. Then, everything starts rolling.

PAs (physician assistant) come to say hello, to acquire info about my stay home and any new side effects, to catch up. After meeting Marina (from Russia), Pegah (from Iran), Emilee (from Utah), Anastasia (from Belarus) and Lily (from Russia), I think PAs are the coolest people in the world. They help, assist, advise, entertain, share knowledge and do everything else what doctors do, only faster. Though, I have no complains about Dr. J.L., every time I go for chemo, he always visits me, always!

My day starts at 5.30 am when the nurse’s assistant comes to take vitals – blood pressure, temperature, oxygen and heart rate. I usually do well here, except for days when I have very low pressure (86/48 for ex.) Shortly after, around 5.45 am a nurse would come to draw blood for CBC, PT/INR and some other stuff, s/he also brings my first cup of pills (Nexium & Colace). At 7.30 am, they serve breakfast and here it gets tricky, depending on my day of chemo, I might eat some or turn my head and ask a food department person to take a tray away. I don’t complain about food, up till my 3rd chemo, I thought it was pretty diverse and well cooked, but it does get repetitive, especially when you struggle with constant nausea and loss of appetite.

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Doctor’s round starts around 8 am, doctor and his entourage come, ask questions, listen for my answers, perhaps suggest something, stethoscope my lungs and stomach, check my ankles and move on to the next patient. So far, Dr. Pearse and Dr. Mark are my favorites, because they always suggest something interesting and innovative. Once, Dr. Mark glanced through my food tray and saw green tea. He insisted on switching to red tea because according to the studies, green tea helps to grow/regenerate cells, while chemo goal was to kill cells thus, by drinking green tea, unintentionally I was regressing the effects of my chemo regiment.

After the doctor’s round, I am given another cup of pills (CilestValtrex, Prednisone and sometimes Bactrim). My vitals are checked 4-6 times a day, depending on whether a nurse’s assistant can find me on the floor because I like to walk around and chat with other patients, or sit in a common room. Walking is essential, I try to log 10,000 steps a day but as the days and chemo progress, I get weaker and prefer to spend my time in a chair, reading.

Lunch is at 11.30 am, early, but so is dinner – at 5.30 pm. Dimitris and mom come and go whenever they please and I rarely remain alone. It is great, because you know they really care, but at the same time, sometimes i feel too tired to “entertain” them. But I do love when they bring me all the delicious things, I developed a craving for Sneakers bars and Dimitris makes sure i always have enough change to go and fetch one from a vending machine down the hall.

In the evenings, i am given Warfarin, Senna and Ambien, if i can’t fall asleep.  I am also allowed to take a 15- minutes shower between the packs, which feels like a liberation. On Monday and Tuesdays (and Thursdays, but i am never in the hospital on that day), we have a milk-shake lady distributing different shakes to patients; every day at 11 am, we have a walking club but I never participate, maybe i should. Sometimes, we have music concerts in the common room or volunteer guitar players/singers who go from room to room and perform for each individual patient. I definitely appreciate how much effort the hospital and especially private individuals put into making us feel better.

I have to mention that 3 side effects come out straight away – nausea, mouth sores (i try to use Biotene at least every 6 hours) and constipation (30 grams  of fiber do the trick). Also, on day 2-3, I acquire a so called “moon face” when due to all the chemo and liquid, my face literally looses its shape and becomes perfectly puffy, watery and round. It does go away after about 5-6 days.

Another subject is my roommates. So far, I had a few, each and every one of them were different. This time around I got an American woman in her 60s with some sort of cancer. I said “some sort” because nobody knew what type of cancer she had since she had no medical insurance thus, no NYP doctor wanted to take her. She was treated by the hospital and whenever she had a chance, she complained about American health care, loudly wishing for a socialist regime. Little or nothing did she know about Socialism! Her other passion was TV, which she never failed to turn on at 5 am and turn off at 10 pm. Once, at 5.20 am unable to control myself, I told her to turn the TV off till the quiet hour was over, after which she accused me of being a Russian spy. She also had a weird crash on male nurses and nurse aids, always flirting and taking selfies with them. Yes, she was a psycho and I felt relieved to be released on Tuesday at 3 pm.

I mentioned earlier, that the very first night at home is a frightening experience for me – I am afraid and often in pain. It is hard to explain, but I know that if i survive THAT night, I can handle the following days. Sometime in the evening, i started to develop a tissue pain, spreading from the middle of my skull till mid hip. It felt as if my skin was reaping exposing burning meat underneath. Obviously, i couldn’t lay down or lean on anything with my body, but i had to go to bed and try to get some rest. Basically, my first night after 3rd chemo was a nightmare, despite taking 2 anti-nausea medications, I felt sick all night and kept a bucket close to my pillow. I was warn that the side effects and chemo would accumulate in my body, making medication less effective and my general state progressively worse, but one thing is to know and another thing is to live through this. But I did make it through the night.

Wednesday- Thursday, December 3-18, 2014

The terrible tissue/bone pain continued for 2-3 days and so did the nausea. By Friday, it all luckily went away. I have to admit that emotionally, the 3rd chemo was the most difficult. My PET scan showed that the protocol worked, I had no longer any desire to stay in the hospital and go through chemo all over again poisoning my body and feeling like a deadman. On several occasions I cried to Dimitris how much I don’t want to go back to the hospital and asked him to spare me from that experience. I was an emotional wreck and i guess it is because the half-way mark doesn’t mean anything. I knew the side effects, I felt worse and worse, but I couldn’t bear to go through exact the same number of chemos again.

24 hours after completing the 3rd chemo, I started the 7-day course of Neupogen injections to stimulate the growth of white blood cells. I complemented the shots with daily Claritin pill which apparently helps to subdue the bone pain. On Thursday, I went to a blood work follow up and clinic, as always, was super busy. Usually, I have to wait for 30-45 minutes but lately it goes way beyond an hour. It doesn’t irritates me but makes me sad to look at all those people. Really sad. Frequently, we encounter the same old Russian couple. They come at about the same time with us, wait for about an hour but throughout the entire time, husband or wife, rotating, is going back to the complementary food stationaries and tightly crams his/her bag with hospital food to take home: milk, yoghurt, cereal, tea, cookie, different snacks etc. It is hysterical.

Clinic has superb facilities and stuff, but sometimes, I get unlucky to have a new nurse, who would poke my port but have no blood return. I know, I went through more than just a needle poke, but every single poke does accumulate and stresses me out, so when I have to let them shove those needles more times than necessary, it is just not acceptable and intolerable. I am on a new method of remembering all the best nurses and then demanding their service upon arrival. So far it works.

On Friday, Dimitris and I had to take Kuzya to his first veterinary appointment. In Belarus, no cat would ever have to experience a doctor, but it is a must thing to do in the US. In addition, because I am a high risk patient, we wanted to make everything right and vaccinate our little kitten so I wouldn’t get sick or acquire some infection from him. So, Dimitris took Kuzya to the vet, and it was the most stressful experience for me because I couldn’t go with them and I didn’t how Kuzya would take this. Apparently, he handled it very well, vet and nurse complemented Kuzya for his good behavior and stunning looks, he was tested for FIV and cancer, given two vaccines and sent back home. He was my little hero!

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On Saturday, we finally had a wig trial and fitting. We went to Bitz & Pieces with a wig we purchased from them back in October, so they can finally fit it on my bald head and style it the way I like. I still can’t tell whether I like their services or not, it is patchy. On the day they sold us a wig, they were nice and super friendly, on the second occasion when I showed up for styling, they basically turned me away because my stylist wasn’t available and they weren’t nice about it. This time around, they were neutrally friendly. Maggie who is my stylist, was neither imaginative nor enthusiastic about my wig or personal preferences. I have never worn a wig on a daily basis so I needed a professional advice, but I received none. She basically did everything I asked her to do (repeating the words of Rafaelle Mallica who talked extensively about wigs and styles with me). The final result was that I walked out of the show room with a gorgeous looking head and I felt like a movie star, no less.

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For the next couple days, usually day 7-14 counted from the first day of chemo, I stayed home, nursing my neutropenia. I felt more or less normal, so I was taking cooking classes from my mom, who is a superb cook. I hope to record in a book all the dishes she prepared for us while she is in NYC, so I can later start cooking myself, a skill I lost when I moved to the US. Eastern European cuisine might not be as exotic or delicate as French, which I consider the best, but it is definitely one of the most tasty ones. In addition, on December 7, Dimitris and I celebrated the 2nd anniversary since we became a couple, so I presented him with a gift card for Greek cooking class for both of us. Can’t wait to go.

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On Thursday, December 10, I had another blood work which showed that I am back to normal and can finally walk outside without a mask. The next day, I took mom to Brighton Beach, an area in Brooklyn where most Russians settled when they came to the US. I rarely go to that area because it is quite far from where we live, but also because I don’t feel particularly affiliated with people there who moved to NYC in mid 70’s and until now desperately try to preserve Odessa of that epoch, which reflects in everything – from napkins in the restaurant, to rude sellers at the Gastronom, to clothes people wear, to people’s talks, phobias and racism.  However, since my mom doesn’t speak English, I thought it would be interesting for her to come and see this part of NYC herself and … see the Atlantic ocean from the beach for the very first time. Gladly, she loved the area and she definitely felt at ease and in her own pond there. I guess she got tired of having only one person to converse in her native tongue, myself, in the last 2 months. After that trip, my mom goes to Brighton beach at least once a week to buy Russian food.

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Saturday, December 12. I have to admit that since 2002, the year I moved to the US and NYC, I spent only one New Year’s and Christmas in the city. The other 12 years, I took time off from work and traveled the world, celebrating everywhere from Paris to Rome to Montreal etc. And since my move, I have never had a real Christmas tree at my house. Due to my illness, we weren’t going to travel anywhere, so it was a great opportunity to go shopping for christmas ornaments, lights and a tree itself.

Mom, Dimitris and I, as a group, went out to the 68th street and 2nd avenue to pick a tree from a Christmas tree stand. Of course, I picked the fluffiest and best looking tree for $260-280, which I thought was excessively expensive. The vendors tried to show me some other trees but they were nothing compare to the first one – love from the first sights, as they say. One tree was visibly bald which I loudly announced to the vendor and he made a joke whether I was taking about him (he was a bald man) or a tree,  in response, I lifted by hat and showed him that i had no hair under my fur hat. He looked at me and told the tree-keeper to wrap the first tree we chose and deliver it to us for $200. Having cancer has its advantages too, I have to admit that i was very touched by a kind gesture of this random man.

It is lots of fun to decorate a free, especially as good looking as ours. Dimitris and I have a tradition to buy a Christmas ornament from every place we visit, from Bermuda to London to Santorini to Minsk, so half of the tree was decorated with the travel memorabilia while another half was with regular ornaments we bought at Marshall’s. It turned out to be very beautiful and luckily for us, Kuzya paid little or no attention to the tree.

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The following 6 days, my mom and I walked around the city with a camera. I took her to the Union Sq to visit the Christmas street market, we visited the Grand Central Terminal and NY Public library as well as Madison Sq Park and Herald Sq with its shops and Macy’s  flagship store. And of course, we couldn’t skip the main Christmas tree of the country – at the Rockefeller center. New York is a fantastic city, and it was singing and sparkling like a diamond during the holidays.

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Friday – Tuesday, December 19-23, 2014

My 4th chemo cycle! I can’t say it was the hardest one in terms of side effects, but it was one of the most emotionally draining. For one, it wasn’t the first, the middle or the last, it was the 4th! Then, even though, I was happy to get my period (yey, I am not yet retiring from bearing children), but I was extremely physically tired and emotionally supressed.

From early morning on Friday, I was packed and ready to go to the hospital, but I haven’t gotten a call from the admission office till about noon and when they called, they asked me to come at 3.00 pm. When we arrived at the appointed hour, we ended up waiting for another 2 hours in the reception area, because the room wasn’t ready. Of course, we live 3 blocks away and knowing that, the hospital should have taken it into consideration, but they didn’t, so by the time we checked-in, I was pretty upset.  After check-in, the nurses and PAs need at least 4-5 hours before they can start administering chemo, thus, the later you start, the longer you stay in the hospital, and sometimes it measures in days.

The neuropathy has become unbearable, getting worse and worse with each chemo, that is why Dr. J.L. decided to take Vincristine off my chemo treatment all together, and add Lyrica to alleviate the side effects. When I asked whether it would decrease my chances for remission, he said that I have completed 3 full chemo cycles, and the rest is just marginal treatment.  Later, by interrogating my doctor,  I found out that besides removing one drug, Dr. J.L. increased the dosage of two other drugs on my regiment. Lesson – always ask your doctor direct questions, otherwise s/he won’t volunteer any information.

As I mentioned, my mental state was not there. My computer accidentally caught the cord and fell on the floor crashing, which isn’t a big deal, but for me it was a tragedy. Luckily, Dimitris took care of everything and a day (and many hundreds of $$) later, it was return to me as if new.

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There was another accident that happened to me at the hospital that I can’t stay quiet about. On the very first night, a woman from the ED was placed in my ward; she wasn’t an onco patient. Her name was V. Acosta and from day one, she was disrespectful and rude to everyone. One night, at 2 am, she was watching hip-hop videos on her phone using speakers; I got up and told a nurse that it prevented me from resting. The nurse, kindly informed the patient that it was a quiet hour and she had to use earphones or step out of the room if she wished to continue watching her videos. The moment, the nurse left the room, Acosta turned to me and said “You, bald-headed bitch! You don’t want me to watch the videos? I am going to beat the fuck out of you, you, bald-headed bitch. I don’t care if they arrest me again, I will beat you till I kill you.” So much for my sleep and for the hospital’s obligation to keep me in “safe and secure environment”, I knew, it was a valid threat. A few minutes later, Acosta called her sister and using speakerphone, asked her what she should do to me, and her sister recommended her to throw me out of the window into the river. She repeatedly said many inappropriate words, going as far as ridiculing of my “cancer look”.  She stayed on the phone for about an hour and I recorded their entire conversation.  Obviously, I couldn’t close my eyes after but I was also too frighten to get up and seek assistance so I waited till the morning. Then, I walked out of the room and reported everything to the nurses and hospital security. There was no way i could go back to that room again.

I won’t go into details, but I spent a day – 12 long hours – sitting in a common room on a bench, waiting for the hospital to find me either another room or move Acosta from my room. Sadly, NY Presbyterian did nothing to resolve this situation and later, I found out, that the Patient Care staff wasn’t even informed about the situation. I understand that the facilities and room availabilities are tight, but to allow a cancer patient in treatment to sit alone pretty much in the lobby for over 12 hours, isn’t acceptable by any measure or stretch of imagination. Only around 5 pm, somebody rolled in a reclining chair so i can finally lay down, and i was on my 3rd day of chemo – time when i feel very sick.  It was an awful mishandling of the situation by the hospital and a lesson to myself.

Wednesday – Monday, December 24-29, 2014

This time around, in order to fight side effects, I decided to distract myself with different activities and visits from friends. Christmas time in NYC is wonderful. On Wednesday, while on his trip to New York, a classmate and a good friend of ours, Onur came to visit. I feel uncomfortable telling people about my illness, and this is one of the reasons why just a handful of friends know about it. Hosting Onur in a wig and not telling him the reason, made me feel like a protagonist of a bad off-Broadway play. I am so grateful for his understanding and attitude, for lack of pity and silly words of encouragement. There can be nothing worse than “Be Strong” or “This is all mental”.

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On Thursday, Christmas day, my mom, Dimitris and I went for a walk and casual photoshoot to the Central Park. I wasn’t feeling well, but since my mom came to NYC in November, we haven’t spent any time as a family, together. I’ve lived in NYC since 2002 and have been to Central Park a thousand of times, but every time I go there, it unfolds new and more beautiful parts. That was a wonderful, liberating walk, that two hours later exhausted my energy to zero. At night, we had a very nice Christmas dinner, Christmas that Dimitris celebrates but we don’t, since we are Russian Orthodox.

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On Friday, after the blood work at the clinic, Dimitris and I visited The Holy Trinity Cathedral, a Greek Orthodox church near our house and headed for the Diamond District on 47th st between 5th and 6th avenues. A wonderful season of exchanging the presents was coming and Dimitris has learnt that “Rings and minks were my favorite things, along with gold and diamonds”.  However, while checking out pinky rings for me, we were really looking for pearl earrings for my mom’s birthday on December 27. Diamond shopping can enervate even the most tolerant and patient person; considering that I was only 3 days after chemo and wearing a face mask (try to breathe in that thing), two hours were more than I could spend looking at the jewelry, however, I have to admit that the pre-Christmas rush had died out and we weren’t hassled by the sales people at all.

I guess my mom didn’t expect the birthday extravaganza at all!

I spent the rest of the week recovering from chemo, unquestionably feeling its deadly grip on me. Chest pains got less severe but at times they became more prominent and sharp targeting heart area; second week always evokes mouth soars (and that week they were plenty and particularly painful under my tongue), sore throat, runny nose and fissures – everything that evolves around fast dividing cells. Diet, which can mitigate or alleviate some of the side effects, is hard to follow because one day an apple would be just a fruit and the very next day it is cause of diarrhea. Each recovery time is a new learning process in itself.

Another aspect that I wanted to bring up is appearance. I don’t have vanity but I always cared about my looks, actions, attitudes, achievements and cancer made a new person out of me, a monster. Of course, I continue to extensively read and learn new things, but many matters that were important disappeared. I gained 12 lbs (6kgs) because I let myself go, not because chemo made me gain weight (though my doctor said i would). Every night I go to bed next to my pretty much new husband, and every morning I wake up as a monster in a pool of sweat (i still have drenching night sweats) with chemo-dry mouth and sealed eyes. He doesn’t deserve it and neither do I. Sadly, my attitude isn’t any better.  I continue telling myself the moment I am in recovery… when i feel better….I will take care of things, and I will, but at the moment, I am the overweight, ugly, chemo-reeking woman. How sad!

Gladly, we have a stationary bike at home and on Sunday, I climbed for a 30 minutes of easy hill ride. I am not sure whether it was a work-out or something else, but the following day, I was coughing, sneezing, fevering and by the evening developed temperature of +38.5C. I know the rules of engagement, when the temperature goes above +38C, I have to go to the ER or at least call the doctor. After a brief phone consultation with an on-call doctor at the clinic, I took tylenol and went to bed. I really hoped to avoid going back to the hospital, but that is exactly what happened next.

Tuesday- Thursday, December 30- January 1, 2015

Next day, Dimitris and I went to, what I thought was, a regular blood work, but after checking my results, Orel told me that it was too dangerous for me to stay home and I had to be admitted to the Emergency Department. My WBC dropped to 0.1 and I was hospitalized with neutropenic fever. I know that while I have no WBC, my body doesn’t produce antibodies to fight any infection, however, I didn’t know that when somebody is neutropenic, the body might not even register an infection until it is too late. I would hate to spend a New Year’s in the hospital but this is exactly what was going to happen.

At the ER, a doctor ordered to take pretty much every test (blood, urine and nose culture) to identify the source of infection. I was too naive to think that nasal swab was just a gentle tap inside my nostril, apparently, the q-tip-like swab was inserted into my nose and then… after breaking a barrier…  it went all the way to my brain, or this is how it felt. I was also ordered an X-ray and EKG. After administering an IV, magnesium and potassium (40ml), doctor ordered me an antibiotic every 8 hours.

I was at the ER from noon to about 7 pm, in a private room and I can’t say enough praise for the doctors and nurses who cared for me. They were attentive, knowledgable, very professional and at times entertaining. My nurse Mark was a temp nurse at the New York Presbyterian Weill Cornell ED, and most of the week he worked as a helicopter nurse upstate NY, from where he transported the patients to as far as a hospital in Boston, MA. Incredible people with fascinating jobs!

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Room on the 10th floor Central opened up in the evening and we were immediately transferred upstairs. I knew that I would have to spend at least a few days in the hospital (culture for infection takes 48 hours to mature, so the results couldn’t come back before) and I was, mildly saying, upset. There are ways to vent the steam and of course, I could get mean with nurses and hospital staff, or with Dimitris (my poor love-man, he already suffered so much from me), but I sent Dimi away and spent the rest of the evening crying.

On December 31, doctors continued following my blood results and general health condition. I didn’t have fever for two days but my WBC still stayed at 0.1 and they waited for it to climb to at least 1.0 before considering my release. The level of hemoglobin dropped to 7.4 and Pegah recommended a blood transfusion (=>8.0 is when transfusions are required). I have never had it before, but because I felt unusually dizzy and light-headed, I agreed on one pack of blood (usually, there are two). They say, despite the match and special blood-purification system, people still developed allergies or side effects from blood transfusions, and since I was a newbie, I was at risk to develop one. Gladly, it all went smoothly.

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My roommate was a nice, quiet, intelligent, Russian-speaking (which made her a good conversation companion for my mom) and very interesting middle aged woman from Georgia. When we weren’t reading, we were talking. Frankly, I did expect a bit more action on the floor for the New Year’s Eve, however, it was all quiet. Dimitris came around 10 pm and together, dozing off, we waited for the ball to drop. At midnight, in the darkness (because my roommate was already asleep), we cheered with candies and wished each other a Very Happy and Healthy New Year. A few minutes later, we walked out to the lobby to wish Happy New Year to the nurses but the station was empty, everyone was busy.

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Unlike in the US or other Western countries, the New Year’s in the USSR was the biggest holiday. I guess partially it was because Christmas doesn’t come till January 7, but also because religion was almost non-existent. So, i grew up celebrating the Eve with grandeur and presents. We even have a saying “Your new year will pass the same way as you celebrate its beginning”. Yeah, not a fabulous start of 2015!

On January 1, after checking my blood results, I was told that my WBC was still at 0.7 and despite me feeling well, the PAs were reluctant to let me go home. However, I was so desperate to leave that Pegah called Dr. J.L. and he let me go under the condition that I would continue taking antibiotic for another 5 days.

Here is the end of my 2014 blog. The year started out great in India with Dalai Lama, I got engaged in May and we got married in July. 7 weeks we spent traveling in Europe and collecting all the wonderful memories with our families only to come back to the US and forget all about them because of a terrible diagnoses I was given. Months from September till now were the hardest ones and a definite test for our young family, but if we withstand this, we will go on forever. I didn’t have time to reflect on events that already happened or make plans for the future, I was simply given my cancerous boots and asked to walk and walk and walk. And I walk….

Preliminary Medical bill for December is $91,427.13 ( as per 1/30/15)

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