Is this the end? Does the last chemo qualify as the end of the treatment? Does it end the cancer? Will it be the beginning of a new life? Is this the last chemo? Is this the last treatment? There are so many questions, but for the moment in time, I am taking a deep breath believing that this is the end.

I didn’t wait for the last cycle, my superstitious self was afraid to look that far forward though, of course, I knew the day – Tuesday, February 3, 2015. And the day has come, at last.

The New York Presbyterian Weill Cornell admission office called at 8 am when I was still in bed and asked me to come in as soon as I was ready. Dimitris and I headed over at 9.30 am and were promptly checked in and placed in a ward 207A Central. Out of 8 times in the hospital, I spent most of my time in the Central. I knew the protocol and the usual routine – the nurse would access my double port, fix the catheters, draw blood and wait for the results.

Meanwhile, one of the PAs dropped by to acquire about changes in my condition. By now, she is well aware of all the new medications/conditions/appointments I acquired in a two-week break we haven’t seen each other. When the blood results come in, a PA will issue an order for chemo – first for Rituxan and then for the first 24 hour pack – Doxorubicin and Etoposide.

I didn’t get my first pack before 3.15 pm, so I spent time walking around the 10th floor. Logging 10,000 steps a day is my goal when I am in the hospital. I move and it makes me feel accomplished at least in something. Before hooking me up on Rituxan, I was given the usual Tylenol, Benadryl and Aloxi (the 72-hour anti-nausea medication). Zofran wasn’t working for me anymore, they call it a cumulative effect of chemotherapy. First time on Rituxan scared the hell out of me, so I prefer to spend time with my first pack in bed, plus Benadryl makes me really sleepy, which helps, it speeds things up.

At around 7 pm, I was placed on my first 24-hour brown pack, at the rate of 43.3 ml/h, which is the hospital standard but by then, I already requested to speed my packs up to 55 ml/h starting from the pack number 2. It cuts the time by 5-6 hours per pack. Along with my regular medications (Nexium, Colace, Lyrica, Bactrim DS, Valtrex, Entecavir, Senna, Ambien, Warfarin, Diltiazem cream, Cilest, Biotene and Magic Mouthwash), they added magnesium to my list.

On the second day, I got acquainted with my roommate, Yekaterina and her husband Igor. Yekaterina is a 78 y.o. newly diagnosed leukemia patient. She and he husband immigrated from St. Petersburg 30 years ago in order for her to get a free kidney transplant in the US, after which she went to get a pace-maker, and brain aneurysm and now, cancer; while her husband, unable to learn English and find a job became her full time caregiver. On Sunday, they celebrated their 51st wedding anniversary and I can’t describe in words how much love, care, passion and most importantly humor they have for each other. Yekaterina, despite her severe health condition, age and nearly deafness, was always courteous and merry. I was even more amazing to find out that Yekaterina, as a child, survived the entire siege of Leningrad in 1940s.

Meanwhile, I continued to walk, read, watch Stanford classes online, I made myself busy. Luckily, this time around, I didn’t have many side effects I experienced during my early chemotherapies such as chest pains, weakness, constipation, only nausea. I made new friends in the hospital, who were on the same protocol as me, only a few cycles behind. We all discussed the common side effects and share advices on how we cope with them at home. Indeed, my cancer is not your cancer, everyone is unique and reacts to everything differently.

On Monday, Dr.J.L. for once was an on-duty Hospital doctor, so he came to check on me with 6 other residents. Frankly, by now I have no other questions but about the recovery and rehabilitation process. They scheduled me for a meeting with a physical therapist to assess my condition and perhaps schedule a treatment to get me back on my feet. In the last 5 months, I learnt how to mitigate my side effects more or less effectively, but I am at loss when it comes to what will come next. When will be the day when I say – I became “normal self” 6 months after my chemo was over, 18 months, 24 months? For now, my goal is to be “normal” the day I come back home.

A small accident happened on Monday night when my roommate stepped out and somebody came to the ward and stole their computer, electronic translator and a box for hearing aid. It was particularly bad because I was in the room too, but resting with my eyes closed, so I heard the brisk steps but didn’t pay attention. How little dignity it takes to steel from somebody at the oncology ward. May they burn in hell.

The same evening, Dimitris brought two cakes for the nurse stations in the South and Central to celebrate my last chemo. Nurses do their jobs as well as they can, but I wanted to let them know that I appreciate even the smallest, the most incremental gestures they made to make me feel better and I know that many of them went beyond their call of duty to do so. It was my small token of appreciation.

My last chemo pack was over at 3 am on Tuesday morning and after requesting an additional dosage of Aloxi, I was sent home by 9 am.

After my last chemo cycle, my discharged paper stated my diagnosis:

1. Lymphoma
2. Atrial thrombus
3. Anticoagulation
4. Peripheral neuropathy
5. Encounter for antineoplastic chemotherapy
6. Anemia
7. Anal Fissure
8. Pancytopenia

In September 2014 I checked in with one disease, in February 2015, I checked out with 8, but I am alive.

I’ve learnt that the best way to cope with emerging side effects is to keep myself busy. Luckily, our Oxford classmate, Hideki and his family were visiting NYC from Tokyo so we invited them to come for tea. It is strange and awkward to tell your friends, once again, that you have cancer, but I guess eventually, they all will slowly find out.

My night was sleepless and terribly nauseous but I am looking forward to recovery, this time – full recovery.

Wednesday – Tuesday, February 3-17, 2015

When you want something really bad and keep very quiet about it, but still don’t get it, this is when you become utterly disappointed. I thought, 5 chemo cycles taught me how to deal with the post-chemo side effects, but this time was different. They say, chemo has a cumulative effect, it goes into your body, then goes again and again but never completely leaves it. No matter how much water I drink (to wash chemo out), it stays in the body and makes me more and more sick. Now, when I completed 6 cycles, i feel like my entire self, including my soul, was soaked in chemo. Thus, I faced difficulties getting back to an “ok” state.

The side effects didn’t hit me until two days later. I can’t explained the delay and I frankly hoped it would skip me all together this time, but it hit me hard. The nausea, horrible bone pain, vertigo, fissures, weakness etc. Nurse came to check on me a few times. She is really lovely and knows a whole lot about holistic medicine alone with conventional one. She has advised me to take Epsom Salt baths for the bone pain and drink Gelatin supplement for stomach coating and it seems to be working. I was also pre-approved for 4 home visits from a physical therapist, Richard, and when he showed up to evaluate my state, he exhausted me just by making me get up the couch and sit back down, continuously 5 times. How come i lost all my stamina?! My heart was trying to get out of my chest, I was out of breath and the rest of the day I spent in bed. I know, my body needs time to heal and recover before I can start working out but when is the right time?

On Tuesday, February 10, I had my blood work and apparently, my WBC dropped to 0.0X, my hemoglobin was low, which explains vertigo and weakness, but so were my platelets, hence – no endurance since blood doesn’t carry enough oxygen. I was placed back on a 7 day antibiotic-course and advised to continue the neupogen shots.  Since I already said goodbyes to everyone at the hospital, the last thing I wanted to do was to end up there with neutropenia again. So, I stayed home and cooked; apparently, after my mom left, cooking became one of my favorite hobbies.

On Thursday, February 12 I had a follow up blood work and an appointment with Dr. J.L.  My counts were back to normal or growing, my vitals looked fine, I was taken off Lyrica but continued to take other medications, and I was given my next appointment only in 6 weeks. Wow, I couldn’t believe I wouldn’t have to go back to the clinic for so long! It is a liberating yet scary feeling since I got so used to the chemo regiment and my cancer state, that I can’t imagine being away from doctors for so long. Though, it doesn’t mean i can eat anything I want, or use all the creams/supplements I used before the chemo. My doctor asked me to wait till PET scan results.

Valentine’s day was nice and snowy. Dimitris’ parents flew in from Athens and we spent a quiet evening catching up. It is so great to have them here, in NYC since I know how much they cared and worried about me. On Sunday night, February 15, we all watched the 40th anniversary of SNL. I wish I felt a bit better to take them places, but my recovery is dragging on and even though I feel better and better, those changes are so marginal, almost nonexistent. Every side effect either takes longer to recover or comes back in an exaggerated form, f.ex. I developed mouth sores this time that took a while to go away and one was as big as my cheek, making it impossible for me to eat or drink for a few days.

On Monday, January 16, I finally had energy to catch up with our wedding manager in Malta. Martina is a lovely and very upbeat and energetic person, I wouldn’t have wished for a better event planner. We spent 2.5 hours discussing the wedding details and for the first time since I started to plan my wedding, I felt pretty comfortable that we will make it right and grande, just the way I want it.

On Tuesday, February 17, I went to visit Raffaele Mollica and see how the work on my wig progressing. The wig looked just fabulous but it needed another week to be completed. I can’t wait to wear my own hair again.

The post The Notes of a Cancerous Girl. February 2015 first appeared on SvetaNYC.

Hospital’s 5 day chemo stays are depressing, but even more saddening are hospitalizations between the chemos. I added to my collection two extra stays by now, and I was going to do anything to make sure not to end up in the ED again. The “between the chemo time” should be about fun, family and recovery.

On Sunday, I scheduled an appointment with David’s Bridal to check out some dressed for my mom. I am quite skeptical about the dress’ choices for bride’s mom in Belarus, so we could at least buy something here and forget about it. My mom and I had a really good time at the salon, we pre-selected a few dresses online, accepted the sales-person recommendations and indeed left the salon with an order.  After the Salon, we walked to Harold Square, Macy’s & Victoria’s Secret to do some lingerie shopping.

Since I’ve completed my 4th chemo, I was having very strong chest pains, different from familiar dull ones that doctor earlier classified as “lymphoma-breaking chest pain”. The pain was sharp, persistent and originated near the heart, making it hard to breathe and at times, I had to lean over to take a full breath of air. I told Orel and after a blood work on Monday, I went for an echocardiogram. When I followed up with Orel a few days later, she said that there was nothing on my echo, except that my blood clot got smaller. In a few more days, pain stopped.

I am continuing to take Lyrica twice a day (I am prescribed to take every 8 hours, but I never wake up at 6 am) and am feeling less numbness in my fingers, it is incremental but still. Another new thing I recorded after the 4th chemo is a loss of eye-lashes and mild inflammation of my eye-lids. Before I started the chemo, I was told that I would loose all hair that I want, but none of what I don’t want. Frankly, whatever body parts I shaved before going into my 1st chemo, have never seen any hair again (woo-hoo), I lost the hair on my head after the 2nd chemo and now, after the 4th, I am slowly but persistently starting to loose my eye-lashes. I know they will grow back, but lack of them makes me look even sicker and sadder, which I am.

On Tuesday, after congratulating my dad with his 60th birthday, I went to TKTS Ticket Booth to buy tickets for a Broadway show. A few days prior, my mom finally decided to go back to Belarus and we bought her a return ticket for January 24. Due to my illness, I wasn’t always there to show her the city or attend shows or exhibits, so in the remaining few weeks, I was trying to do as much as possible. It is hard to attend a show for somebody who doesn’t speak a word in English, but we went to The Phantom of the Opera and she really loved it.

January 7 is the Orthodox Christmas and we planned to go to a main Russian church on the Upper East Side after completing my blood work. Usually, nurses at the clinic are very skilled, however, sometimes I get a nurse who would either poke my port in a wrong place so it wouldn’t give blood, or make it so painful, that I wouldn’t want to go back. This time around, the nurse was nice but she lost my vials so after returning from a church, I got a call from Orel to come and re-do my blood test. So much for professionalism and Christmas celebration! Needless to say that it was one of the coldest weeks so far with -18C and Arctic wind.

Anyway, after my second blood draw, my friend Charles (Renee’s husband) reached out to me and we agreed to meet up at Maison Kayser on 74th and 3rd Avenue. I haven’t seen him since the day he told me that Renee would no longer participate in clinical trials, and the doctors decided to let her die in peace. It is strange, how even short-term circumstances bring people so close together. Renee and I share the same ward during my first chemo and I feel as if I’ve known Charles for many many years. He lost his wife and I lost a friend, but I was glad he didn’t loose the perspective, he was just as sharp and entertaining as always.

It was also a perfect night to make love to my lover. First time in 114 days! Fight with cancer took all the energy and desire away, but it made my love for him grow stronger in so many different ways!

Friday – Tuesday, January 9-13, 2015.

5th chemo! I finally start to see the light in the end of the tunnel. All I want right now is for it to pass as quietly, painlessly and fast as possible. I was admitted at 4 pm and placed in the same ward as during my 1st chemo – room 201 in Central. My roommate, Queenie N, turned out to be a doctor at NY Presbyterian. She was a very lovely, high spirited lady with a very large family and a huge group of followers who kept her busy at all hours. The 10th floor opened its North Section with a nice lounge and I got another place to escape.

Blood work and access to the port was done quickly, but the results didn’t come in till later, so a nurse started the first bag of Rituxan only at 9.30 pm. Dr. J.L. stopped by to check on me and this is when I found out that my dose was increased which led to a very prolonged state of neutropenia after the 4th cycle.  I don’t like this kind of games, I prefer the doctors to tell me in advance what they are planning to do, not to find it post factum on my own.

My first 24-hour pack was placed at midnight at the speed of 43.3 ml/h, with such speed I won’t be released till Wednesday. However, upon my request, all following 3 packs were sped-up to 55 ml/h and I was swiftly released on Tuesday at 1.00 pm.

I was given the same medication as all previous times:

• 6 am – Lyrica, Colace, Nexium
• 8 am – Valtrex, Bactrim (Fri and Mon), Zofran, Prednisone
• 2 pm –  Lyrica
• 6 pm – Warfarin 2.5 mg or 3.0 mg depending on my INR
• 10 pm – Senna, Ambien, Lyrica

On Monday, I had a consultation with an ophthalmologist. A few days prior I had another curious case of distorted vision (seeing things as through running water) and Dr. wanted me to check my eyes again. Apparently, it was a classical case of a ocular migraine and I was advised to wait till the end of chemo to do anything about it, since cancer treatment could be a cause of it.

Otherwise, the 5th chemo passed the way I wanted it – quiet and without too much stress. First day and night after release still remain difficult for me to cope with – nausea and sense of fear never leave me.

Wednesday – Thursday, January 14-29, 2015.

No matter how many times I have the “first night” after the hospital, it never gets better. It has never got worse than the very first night, but for me, no matter how mentally prepared I am, it is always bad. Frankly, I don’t have any reasonable explanation why I am so scared to be at home, but this feeling is always present. The best option is to be able to fall asleep for a few hours and then deal with the fears and severe bouts of nausea early in the morning. My chemo dosage remained high and expecting WBC to drop and cause neutropenia, I decided to take it slow and easy, stay home as long as I could, don’t work out and spend time with Kuzya.  And this is exactly what I did.

First few days I experienced the same side effects as before:

• nausea, and i am already on 3 anti-nausea medications. However, this time it went away after 2 days
• chest pain, unlike all previous chemos, the pain was mild and very manageable. I hope it is a good sign
• severe tissue pain. It lasts for 24-36 hours but makes life unbearable. I already described it before, but it feels like my body, both tissue and bones, between the head and mid hip is raw and aching. My doctor said it was the side effect of Neupogen but the pain starts even before I do my first shot
• lack of appetite.
• general fear and feeling of misplacement. It is hard to explain but I walk around my apt as if I’ve never been there before, I am afraid to touch things or do anything.
• Cough and runny nose

On Wednesday night (1/14), 24 hours after completing chemo, and for the following 7 days I give myself Neupogen shots in the stomach. Since doctor removed Vincristine from my chemo treatment and I started to take Lyrica, my neuropathy is getting better and I almost regained the feeling in my fingers, so it does make a bit easier to administer shots.

On Friday (1/16), my mom friend’s daughter, who also lives in NYC, came to visit us. I guess, she didn’t know I had cancer, so for 4 hours I had to wear my wig, pretending that it is my own hair, and play a wonderful host. Gosh, 3 days after chemo, it was hard. After they left, I felt exhausted. I do believe that I learnt cope with the post chemo days better, since I recover sooner and sooner, but I couldn’t push my boundaries.

On Saturday (1/17), as scheduled, my period arrived. Since I started the chemo, my period became almost non-existent and I worried that it would stop all together (as I have read online) for some period of time or for good. So, every period is celebrated as Christmas, with joy. However, this period was very heavy, I couldn’t stop bleeding day and night for 3 days. I am taking blood thinner, Warfarin, so every sign of abnormal bleeding should be reported to Orel or Dr. J.L. But as timely as it started, in the same timely manner it stopped a few days later.

Second stage of post-chemo period (day 7-14) is the time when I start feeling better but my WBC go very low and cells in my stomach, mouth and nose start to divide and re-grow. It causes repeated runny nose, mouth soars, acid reflux and anal fissures. Everything that has to do with the gastroenterology goes wrong.  I developed a strict regiment to keep everything at bay – I use Biotene and Magic Mouthwash at least 3-4 times a day, follow a special diet, take at least 30 grams of fiber and don’t eat food that would cause either diarrhea or constipation and use the regular sitz bath and Diltiazem cream 3-4 times a day to ease the pain.

I was scheduled for a blood-work on Monday (1/19) and Dimitris and I did go to the clinic knowing that it wouldn’t be open due to the Martin Luther King Jr’s birthday. It indeed was closed. I don’t understand how they can schedule me an appointment knowing in advance that they clinic will be closed?! Bizarre!

On Tuesday (1/20) morning, I called Orel to confirm my appointment; since I didn’t have a single blood-work done since my release, exactly a week ago, she asked me to come and have my blood checked. After the results came back, it turned out, not to my surprise, that my WBC was at 0.2, so I was put on a 7-day antibiotic (Levofloxacin) protocol.

On Thursday (1/22) I had another blood-work at the clinic and an appointment with Dr. J.L. Since I am having a chemo-brain, condition when I can’t remember things, I borrowed Dimitris’ habit to write everything down. So every time I see the Dr. I read him my questions from my iPhone and he responds to them and every time my questions become more and more elaborate – “When can i eat raw food?” (2 weeks after chemo is over), “What is going to be my rehab protocol?” (none, I should get better on my own) etc. I gained 14 lbs since I started the treatment so I asked Dr. what he was going to do about it, on which he replied “What are you going to do about it?”. Uh, no help. I am still in a process of looking for a comprehensive post-chemo rehabilitation program.

The same evening, I had to show up in Queens Court. In April 2014, I filed a law suit in a Small Claims Court against somebody who in 2012 borrowed money from me and never gave it back. Accidentally, I bought tickets for the Mariinsky ballet ” Swan Lake” at the BAM the same night so I had to pick where to go and I chose the ballet. I hope my explanation in the Court Adjournment letter was enough to re-schedule the court appearance for another day in the future.

The ballet was amazing. It is my second time seeing “Swan Lake” and both times it was by the best ballet troupes in the World – Bolshoi and Mariinsky theaters. It was one of those performances when you sit and never look at your watch. I wanted it to never end. Exceptional presentation by Xander Parish and Oxana Skorik.

On Friday (1/23) I got a call from Orel. After each chemo, I was re-tested for Hepatitis B and this time it came back active. She wanted me to start taking a new medication (Entecavir) to keep Hepatitis B in check, and also to see a hepatologist the following week, before my last chemo cycle. On Sunday (1/25) I resumed a mild work-out, doing a few stretches and biking for 30 minutes; I stop eating after 8 pm and hope it will help me to reduce weight in the next couple months. Now, I am 148 lbs and can’t fit in any of my clothes.

On Saturday (1/25) we said hello to my mom who was flying back to Belarus. It was sad, because she was with me for almost 3 months and has been a great support and help for both, Dimitris and I. After she left, our new apartment felt too big for the two of us and Kuzya.

As per Mayor De Blasio and his meteorologists, we were supposed to get a mega snow storm on Monday and Tuesday, so many businesses, clinics and even subway were closed, it didn’t materialized but on Wednesday (1/28) I finally got my appointment with a hepatologist at the 1305 York Ave center. Apparently, I acquired Hepatitis B in childhood, perhaps after a visit to a dentist (glorious USSR childhood with unsterilized tools) but my body cleared the virus and developed a very high immune system against it, so high, according to Dr. Kumar, that I should have never been able to get the Hepatitis B again. Except for one case – chemotherapy, which wiped out my entire immune system and not once, but 5 times. Hence, the traces of virus (20<) showed up in the blood-work. She did a few more blood tests and confirmed that I would have to remain on Entecavir for at least one year after completing the chemo regiment. That wasn’t great news, by now I am taking 8 different pills daily and some of them multiple times a day, and a few more here and there. One of my biggest desires is to be off those pills as soon as possible.

Wednesday evening, my friend Jeff invited me for the high-tea at the posh Pierre Hotel. We had a great time catching up and consuming ton of sandwiches and cookies.

On Thursday (1/29) I decided to show off my lack of culinary skills and spent all morning making Dimitris kotlets. They turned out to be eatable and even “delicious” from Dimitris’s words.

Two weeks passed by so quickly and for the first time since I got sick, I was looking forward to my chemo – Last One.

The post The Notes of a Cancerous Girl. January 2015 first appeared on SvetaNYC.

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.

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.

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 (Cilest, Valtrex, 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!

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.

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.

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.

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.

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.

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.

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”.

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.

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!

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.

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.

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)

The post The Notes of a Cancerous Girl. December 2014 first appeared on SvetaNYC.

Later, I would know that for me, each chemo cycle breaks into several stages:

• 120 hours of chemo, when I am in the hospital and feel progressively tired but actually ok.
• immediate post-chemo days, usually it goes for 4-5 days when I feel “dead”, as I call it. Time, that I spent on a sofa, with a New Yorker or a book by Lyudmila Ulitskaya, counting every hour to pass. Dark, painful days and mostly sleepless nights.
• “day 7-14”, as doctors call it, usually overlaps with stage two. This is time when my WBC (white blood cells) are the lowest hence, I am neutropenic (autoimmune and should stay away from sick people), develop horrible soars in my mouth, sore throat and fissures as well endless dry cough.
• Day 15-21 a “week of bliss” or some sort of “normality”, when pains aren’t as often or strong, when I am able to go outside and eat anything I want. I actually do feel “normal” those days, but very tired.

And then, I go for another chemo cycle and everything starts all over again.

Saturday – Thursday. November 1-6, 2014

We were finally leaving the apartment in Queens and moving to a new one on the Upper East Side. It is a very stressful experience, with or without cancer, but Dimitris planned and organized everything so we didn’t have to worry much. New sofa-bed was already waiting for us at the new place and all we did was pack everything and then unpack everything, which took us exactly two days.

On Sunday, my mom arrived from Belarus and I knew that with everything in place, it will get only better. Next following days,  I spent familiarizing her with the area and NYC in general.

On two occasions we visiting the NY Presbyterian hospital – to have a check up with OBGYN doctor (post IVF procedure and a general follow-up) and an ophthalmologist, to make sure that my vision was indeed unimpaired by the chemo therapy. There is a fascinating, yet unfair, correlation between doctors and patients in NYC. In September 2014, before I got sick, I called the same OBGYN office to make an appointment, and the first available one was in March 2015. Since I became a patient at the NYP hospital and officially acquired an “MRN” (medical record number), every doctor at the hospital became available to me at pretty much 1-2 week notice, if not sorter.

Since I felt more or less normal, I took my mom to Central Park (which is only a few blocks away), Rockefeller Plaza, The Times Square, Wall St and Battery park with its view of Statue of Liberty.

She accompanied me to another visit to Rafaelle Mollica, who by then seeded my hair and selected only ones that were usable for a new wig, to take measurements and choose the additional hair for the wig. Wig weaving is a long and very meticulous work, so we agreed to meet in about two months when most of the work should be completed.

There was another idea I was working on for over a month now  – acquiring a kitten. Dimitris and I recently got married, moved to new apt and I was just diagnosed, kitten was a way to bond us even closer, we were able to give a little fur ball a secure place to leave and he, in return, could become my last therapeutical resort, when chemo drugs tirelessly worked on destroying my body.

I reached out to many shelters in and outside of NYC, picked a kitten, wrote a 800 word essay, filled out a 7 page background check questionnaire, reported our income, but to no avail.  Apparently, kittens under the age of 9 months aren’t allowed to get adopted on their own, they come in pairs, and we weren’t looking neither for a pair nor for a grown cat. So, i reached out to Russian Reklama online and found a beautiful 7 week old Scottish Fold kitten in Philadelphia. We bought him the same day and the next day, designated driver brought him straight to our apartment. We called him the Duke of Rothesay, in line with his Scottish blood, but at home, he is simply Kuzya or Kuzma Petrovich. He conquered all hearts of our family and became everyone’s joy.

Friday – Tuesday, November 7-11, 2014 

I was called in to the hospital for the 2nd round of chemo therapy. This time, I had a beautiful room with a river view and my roommate turned out to be a 75 y.o. interesting but totally deaf nun. Let’s call her Lorry. 11th child in her Irish family, she grew up in poverty, saw her brothers and sisters get married but for herself she chose God and monastery. Lorry wasn’t an onco patient but got here via ER after breaking a leg. She had a pacemaker nevertheless her favorite foods were pork chop, steak and whiskey. My only problem was that she couldn’t hear hence she spoke so laud that being next to her was barely possible. She also couldn’t memorize my name so she called me Samantha and for some reason she thought I had breast cancer, I guess she watched too much of “Sex and the City”.

My treatment went according to the plan, this time around i haven’t had any problems with Rituxan, completed a pack within a reasonable 3-4 hour range and was hooked on a cocktail pack almost immediately. I experienced pretty much the same side effects as before – chest pains after the second cocktail pack, nausea, lack of energy, even though i continue to “walk my way to recovery”.

This time around I was placed to 10th Floor South so i had to get myself acquainted with new nurses, and even though Renee stayed in our previous ward, I came to visit her and her husband Charles every day. While i was home, she started a new experimental drug and we hoped it could be a turning point, but when I saw her after a two-week break, I could tell that she deteriorated gravely. She was constantly on oxygen mask, her leukemia spread to 90% of her blood, she was fighting but cancer already placed a claim on her life. Renee was such a wonderful story-teller and listener, after spending months and months in the hospital wards, she remained kind and generous to everyone; bright, intelligent mind was still there but she could no longer talk. She even made an effort to scold me for buying a kitten instead of adopting one.  I cherish every moment we spent together because soon she was gone. She died on November 21, a week after i saw her last. Doctors decided that there was nothing else to be done and they let her die in peace. She was a woman capable of changing people’s lives by simply passing by them on the street, and I am very grateful that life gave me a chance to meet her and know her for a bare month. I am still crying for this loss and i don’t know if i ever stop. May she rest in peace, she very much deserved it.

On Monday, I acquired a very different type of chest pain, and knowing that it is better be safe than sorry, i reported it to the PA. After they administered an echo, I was sent for the cardiac MRI which showed that i had a blood clot near my heart caused by the port. Here we go, on top of everything I also had a blood clot. Fantastic! Now, i had to take blood thinners in addition to all other drugs.

By the end of the 2nd chemo, my hair was falling off at the rising speed so it made sense to shave it all off, which we did in the hospital bathroom using Dimitris’ shaver. The last, 6th, chemo pack was done at around 10 pm on Tuesday and i was allowed to go home with the following list of medication:

1. Aluminum hydroxide-magnesium hydroxide 30 ml – every 6 hours
2. Bactrim DS – mon, wed, fri
3. Ducosate sodium 100 mg – every 8 hours
4. Esomeprazole 20 mg – once a day
5. Loratadine 10 mg – once a day
6. Senna
7. Valtrex 500 mg – once a day
8. Lovenox shot – once a day
9. Warfarin 5 mg – once a day

Dr. J.L. also decided not to give me a single Neulasta shot but put me on 7 daily self-administered Neupogen shots; apparently, since the entire dosage enter your body incrementally, it has less side effects, unlike Neulasta when a 10 day worth of drugs shot in a system at once. Also, due to blood clot, i must be regularly tested for INR (international normalized ratio) and was advised to watch out for any type of bleedings and oh boy, they came!

Wednesday – Monday, November 11-17, 2014

Slow recovery from the 2nd cycle of chemo wasn’t as scary as the first one, I knew and expected some side effects, the most common – chest pains, cough, general weakness, nausea – and luckily, none of the other “unplanned” side effects occurred. The day I come back home from the hospital is the toughest one. I am simply afraid to be away from doctors, so that evening, before going to bed, I finally took Lorazepam, an anti-anxiety medication, and had more or less quiet night, without any crazy thoughts of hurting myself.

On Wednesday, 24 hours after being released from the hospital, I started to administer Neupogen shots and continue them for 7 days. On Thursday, a friend of mine from Beirut, Jihad, was visiting NYC so I asked him to come over to my place. We were very good friends when I lived in Lebanon and it was a joy to see him. Until now, very few people knew about my illness, but I couldn’t play games with Jihad, since he came all the way from Lebanon. Cancer is a private matter and no matter how many relatives or friends you have, only a few would understand what you are going through. We, cancer patients, don’t need people’s pitiful words of apologies, empty pathetic ramblings or worse, words of encouragement or orders “to be strong and most importantly, positive”. Useless words, efforts and waste of time for everyone, and great annoyance as well.

Jihad’s attitude was the opposite and i didn’t regret for sharing with him my bad news. I was also happy that he could finally meet Dimitris.

My cat Kuzya, grew up in 5 days that I wasn’t home and I genuinely enjoyed spending my time playing with him especially since I was too weak and cautious to interact with people. However, cats (pets) could also be dangerous for cancer patients, so I washed and sanitized my hands every time I touched Kuzya.

On Friday, I went for my regular blood work to the clinic, but on Saturday, I developed, what they thought a GI (gastrointestinal) bleeding, a very dangerous situation for somebody who is on Lovenox and Coumadin. From the side effects and sever rectal pain, I knew that it was perhaps an anal fissure and not GI bleeding but any open wound was a danger since my WBC was about to drop and i could easily get an infection. Dimitris took me to the ED (Emergency Department) at the NY Presbyterian at noon and after spending a day at a private and very cold ward in the ED, we were sent to onco floor 10. Sadly, just 4 days after I completed my chemo, I was back to the hospital.

This is what chemo does to you, it indiscriminately kills every single cell in your body, some slow, some fast. Hair, stomach and mouth linings go fast, visible and painful, the rest of drugs is slowly accumulating in your body, making you sicker and sicker after each chemo. They say that working out, eating healthy would prepare you for the following chemo, so you would better tolerate it, and i try to work out, walk, eat healthy, but frankly, i don’t know whether it actually changes anything. The most I can do is to have as ‘normal” life as possible. My hair is long gone and i am not sad to let it go, since there was no other choice (and shower takes only 5 minutes, where can you beat it?!), as for entire digestive system – awful mouth sores, acidic reflux and terribly painful bleeding anal fissures – I prepared myself for the worst but I couldn’t imagine how bad it would be. In my case, only time and continuous care pull me through those days and nights. Biotine and Magic Mouthwash work pretty good for the mouth, good diet and some stomach coating medications – for acid reflux, but nothing works for fissures, they take the longest to heal and the most painful to have.

So, I was admitted to the hospital for 3 days in order to establish whether i really had Gi bleeding or it was some local rectal bleeding, and to make sure i won’t get infected from either. In the end, they thought it was hemorrhoid, which turned out to be untrue, so I was given a box of witch hazel pads and sent home on Monday, November 17.

Tuesday – Friday, November 18-27, 2014

It was great to be back home and spend time with my mom and Kuzya.

On Thursday, I had a blood work at the clinic which showed that everything was back to normal. The chemo makes your WBC, platelets, hemoglobin very low on day 7-14, but then it slowly starts climbing up, recovering its ground and fighting for life, my life.

On Friday, I finally had a recommended by Dr. J.L. appointment with another NY Presbyterian doctor – colorectal surgeon Dr. H.Y. Apparently, annal fissures, which caused my bleeding, is a very common problem and side effect of chemo therapy (at least R-EPOCH regiment). Dr.H.Y. was a very professional, knowledgeable and, super important, gentle while examining me, since I was in horrible pain. She’s given me a prescription for a topical cream Diltiazem 2% that i had to apply several times a day till my fissure heals (which, due to the nature of chemo, couldn’t be foreseen), i was recommended to eat at least 30 grams of fiber a day, drink 8-10 glasses of water and do my regular sitz baths.

In the afternoon, I took my mom to the MoMA in Midtown (on Fridays, they offer free entrance from 4 pm – 8 pm). We spent about 3 hours exploring different exhibitions and I hope my mom enjoyed it. I have been to MoMA many times but I still prefer the collections of Centre Georges Pompidou in Paris.

Another exciting thing that happened to me that day was that I got my period. Chemotherapy causes premature menopause and infertility, so it was reassuring to know that your ovaries are still working.

On Monday, I was scheduled for another blood work and a PET scan (Positron emission tomography), my first, after I started the treatment, to see whether the prescribed chemo regiment was the right one and the cancer was indeed going away or diminishing. Since my port was already accessed at the cancer clinic, I went two floors down to the Radiology department for my scan, and asked the technician to administer radioactive drug (tracer) via the port and no via the vein. A lady, who gave me a tracer, behaved very strange, not only did she giggle and made faces all the time, but also she accidentally let go a syringe with radioactive tracer so it flew across the entire room. I am not sure, but i think she was high on something.

I was given a sugary drink to sip on for about an hour and then a nurse brought me to the scan room. It was freezing inside, I asked for a blanket and guess what, I was told that it would get warm once I am in the scan machine?! To which I replied that for $7,295 that I pay for a single PET scan, they might as well offer me a blanket and don’t be rude. Incredible! As for the experience inside the machine, it is important to close your eyes and keep your thoughts occupied with something else, otherwise, it is a very scary claustrophobic experience (and I am not afraid of tight spaces). PET scan takes about 30 minutes to complete and after I was done, the stuff didn’t even offer me a bite to eat or sip of water knowing that I had nothing for almost 18 hours. Next time, i am going back to 1305 York Ave facilities.

Good news came the same evening when Orel called and told me that my scan looked “fantastic”. The mass currently measured 2.4 x 4.7 cm, previously measuring 5.9 x 9.4 cm with SUV max 3.7, previously 10.9 where SUV stands for standardized uptake values. I was reassured but i knew that I had 4 more chemos to go and it was dreading.

On Thursday, we introduced my mom to one of the oldest American traditions – Thanksgiving. I invited my girl-friends Sophie, Elena with her mom to join us for a very festive, easy and delicious evening. It was a great way to finish my 2 weeks of recovery before heading for my 3rd cycle the very next morning.

Preliminary November bill (as of 1/11/15) – $147,462.82

The post The Notes of a Cancerous Girl. November 2014. first appeared on SvetaNYC.

Pictures of Mandawa

Before an incident in Jodhpur, I planned to leave Bikaner for Amritsar, but after spending a month in India and witnessing first handedly the attitude of Indian men and dangers that traveling alone presented, I decided not to part with Sunil and my car and have him drive me back to Delhi, where I could spend the rest of my trip in the company of my Oxonian friends.

After I finished a delicious breakfast at Hotel Harasar Haveli and said sad goodbyes to my travel partner Shu and the owner of the Haveli Mr. Bubbles (Mr. Vishwajit Singh Harasar) Sunil and I left for yet another leg of our journey. Sunil told me that his wife was very sick but he couldn’t drive all the way to Delhi on the same day so when we left Bikaner around noon, we proceeded to Mandawa village, located half way between Bikaner and Delhi. Somebody call it “the diamond in the dust”, some “town of living art” and perhaps it is indeed so, however, by the time we got there, I had very little time to explore its famous frescoed havelis.

A remote principality in the center of Shekhawati region of Rajasthan, Mandawa was a trading outpost for the ancient caravan routes that stopped there on the way from China to the Middle East. The origin of the city goes back to the time of Mandu Jat, who founded Mandawa village by establishing a dhani (hamlet) and digging a well.  The city was made a thikana in the mid of 18th century by the Bhojraj Ji Ka Subsub clan of Shekhawat Rajput. Thakur Nawal Singh, the Rajput ruler of Nawalgarh and Mandawa, built a fort in 1755 to protect this outpost. The township that grew around the fort soon attracted a large community of traders, who settled there permanently. Wealthy merchants built beautiful havelis for themselves and their families which are considered to be the most elaborate and beautifully decorated havelis in India.

Presently, a small village of 20,000 people is a popular stop for many Rajasthan-bound tours, however, I haven’t seen a single tourist during my 5 hour exploration around Mandawa. After checking into Hotel Shekhawati, I was offered to take a guided tour around the town for Rs.200. It was already late afternoon and I figured it would be wise to be accompanied by somebody who could not only be my guard but also a story-teller. A young well-dressed man, whose name sadly escaped me, escorted me to the streets of Mandawa.

He briefly told me about the history of the town and then led me to a large elevated site with a water well and some religious constructions. My guide explained the purpose of each well and how they used to serve the citizen of Mandawa. Obviously, they are no longer in use, however, they proudly stand and wait for their time to be in use again.

From the well platform, I could see the beautiful havelis and houses resembling old palaces with people going about their lives. Across from the well, a lavish palace that once, perhaps, was the jewel of Mandawa appeared to be in a pitiful state, dilapidating and crumbling before my eyes. Nevertheless, it was still a palace and people still lived inside. Sadly, many houses and old havelis in Mandawa were in terrible state of preservation, but maybe it added charm to this small village.

Even though, I am very curious and like to look into every nook and cranny, the evening was setting in and we had to rush to see at least one haveli in details. We stopped by a few houses on the way and my guide pointed at the few interesting details of one or another house, and in a few minutes, we arrived to Mohan Lal Sarraf Haveli.

After paying Rs.100 entry fee, my guide invited me in. Obligatory, the entrance was a doubled door, serving both as an elephant gate and a people’s entrance door. However, both doors were open for us. The outer courtyard was a man’s domain where the men of the family met and entertained their guests, did business transactions and slept. For those reasons, it was the most lavishly decorated part of the haveli with incredible carved arches and delicate paintings of elephants, dancing women, galloping horses etc. Guards, occupying one of the former sleeping loggias of the merchant didn’t pay any attention to us and continued to play cards.

The smaller entrance to the heart of the haveli – its women quarter – was inevitably decorated with a string of green peppers and lime, to protect from evil spirits. It felt odd since no one lived in the haveli for a very long time. The inner part of the haveli represented a large courtyard and staircase leading to the second floor living quarters and a rooftop. The floor was almost non existing, some wall parts were replaced and patched up, however, the paintings did remain just as vivid and colorful as they were in mid 18th century. Some rooms were women’s bedrooms with wonderful walk-in closets and built-in wall-shelves, some served as cooking and storing rooms. Balconies were decorated with stunning latticework and the rooftop presented an amazing views of the sun setting over the village.

Indeed, the haveli required some work to make it livable again but according to my guide, it was up for grabs for only $40,000.

It was getting dark and cold very fast, I wish we had time to see more of Mandawa but my guide decided to make a stop at his “friend” art shop where they tried to sell me Indian miniatures. The paintings were indeed beautiful and skillfully painted, but I neither had spare money nor expertise to make an educated purchase. After telling me 1001 stories about everything, including how in 1979 he got a iron from USSR which worked till present day, the owner of the shop let us go.

By the time we got back to the hotel, my dinner was already served. I can’t be sure whether I was the only guest at the hotel but I was definitely the only person in the restaurant. I ordered a typical Rajasthani dinner with soup, gatta vegetables, dal, rice, chapati and papad, all for Rs.225. Despite cold, my guide didn’t put anything on and stayed in his sweater. Later, talking to him I found out that he just got married and his wife and a newly born son (which he was very proud of) are staying in another state with his parents, while he is working in Mandawa. Simply, he didn’t have a jacket because he sent all the money to his family and didn’t have another set of presentable clothes to work with tourists. Sad, because his friend art-dealer was trying to sell me a painting for $180 while my guide was penny pinching so he could send all the money to his father so that his father could take care of his young wife. The deal was Rs.5000 a month, otherwise, she must go. This is Indian life. In the end, I invited him for dinner, paid his fees and tipped him well.

The post Mandawa, India. January 2014 first appeared on SvetaNYC.

January 9, 2014

After a good and warm night of rest, delicious home-cooked breakfast and a thoughtful present from an affectionate and beautiful Parvati’s daughter, it was time to say goodbyes to the magnificent Chittorgarh fort and follow the steps of Maharana Udai Singh II, who in 1568 abandoned the fort for good and moved the Mewar dynasty capital 118 kms west to a place he called Udaipur.

Legend has it that Udai Singh II came upon a hermit while hunting in the foothills of the Aravalli Range. The hermit blessed the king and asked him to build a palace on that spot, assuring him that it would be well protected (you don’t have to be a fakir to understand that the Aravilli mountain range is a great natural protection by itself). Udai Singh followed the advice and built his residency on the site and when Mughal king Akbar the Great conquered Chittorgarh, Udai Singh promptly moved his court to Udaipur. After Udai’s death in 1572, his son Maharana Pratap took the reins of power, he defeated Akbar at the battle of Haldighati in 1576 and re-conquered lost Mewar territories (except for Chittorgarh). Peace and prosperity descended on Udaipur, palaces were built on the lake shores and art, particularly miniature paintings, flourished.

In 1736, the marauding Marathas attacked Udaipur and by the end of the century, the Mewar state was in dire straits and ruins. However, the State of Mewar was re-established with the help of British, who took the city under their protection till 1947 when India gained independence.

Udaipur is referred to as the “Venice of the East” and in my opinion, it is one of the most picturesque cities in Rajasthan and India too. The city, which represents an attractive mix of modern and old, is located on three interconnected lakes within the town – Fateh Sagar, Pichola and Swaroop Sagar Lakes. Multiple forts, palaces, temples, havelis, gardens, mountains, narrow ancient shopping streets, along with fabulous Taj hotels occupying the former Maharana palaces, followed by the all-time high cult of the current symbolic ruler of the Suryavanshi (Sun) dynasty – Maharana Mahendra Singh Mewar – made it a perfect two-day destination.

Sunil dropped me and my luggage outside the city, since there are no out-of-town cars are allowed in (or so he said), so I hired an-always-super-overprices tuk-tuk to get me to my hotel – Jagat Niwas Palace. It is, no doubt, one of the best places to stay in Udaipur, unless you prefer the quaint old-world feel and luxury of the Taj Palaces hotels, which also comes with a few thousand dollars per night price tag.

Jagat Niwas Palace is a beautiful historic haveli located on the Pichola lake, overlooking the Jag Niwas and Jag Mandir, two lake palaces. After I settled in my room on the ground floor with, unfortunately, no lake views, I asked concierge for a map and directions to the City Palace and embarked on a 9 hour tour around the palaces, lakes and temples.

The City Palace was only 5 minutes walk via the narrow alleyways, and because of the well-charted map, it was easy to find. After buying the City Palace Complex Ticket (Rs.30),  the City Palace Museum Entrance ticket (Rs. 115) and one Camera permit (Rs.225), I was surrounded by the tour guides offering their services. I love hiring guides because they “usually” know more than I do and often things that aren’t commonly known, it is definitely a great money-time investment in India. After picking one, very calm and self-assured young guide (Rs 200 + Rs.50 tip), we went in for am amazing 2.5 hours exploration tour around immense Palace premisses. (Guide’s name was Nitin Sharma, his phone is +91-98292-96494, e-mail: magguidr@yahoo.com)

The City Palace was built concurrently by Udai Singh II in 1559 and his 76 successors Maharanas over the period of 300 years. 224 m long and 30 m high, it is the largest palace in India, and despite its enormous size, this conglomeration of eleven separate palaces and gardens, built and extended by various Maharanas, still remains incredibly uniform in architectural design and style. A rich blend of Rajasthani, Mughal, Medieval, European and Chinese architecture is distinctly homogeneous and eye catching. The palace complex was built entirely in granite and marble. The interiors of the palace with its balconies, towers and cupolas exhibit delicate mirror-work, murals, wall paintings , silver-work, inlay-work and colored glass.

Nitin and I entered the front courtyard via Tripolia Pol (built in 1725), in front of the palace facade is an arena where elephant fights were staged in the past to test their prowess before starting on war campaigns.

After giving me a brief history lesson about Udaipur and its maharanas, Nitin mentioned that luckily I came in the right time, because the current Maharana’s only son was getting married in two weeks time, so the palace has been cleaned, re-decorated to look its best for the festivities. We approached the main block of the City Palace through a modest door from the Ganesha Deodhi Terrace. The door was flanked by whitewashed walls vibrantly painted with martial animals in the traditional Rajput style.

Via Toran Pol, named after a traditional wedding ritual, where the groom getting married to the Mewar princess would touch the toran – a temporary crown tied on the entrance gate, we entered the City Palace Museum. Do not get confused, the main entrance ticket to the Palace allows you to enter only the front arena since the rest of the palace operates as a City Palace Museum and requires a separate ticket.  First courtyard, Moti Chowk, was built during the reign of Rana Karan Singh Ji (1620-1628) and served as the arrival and departure hall for the royal family, as well as a place where elephants and horses were prepared for the royal processions.  Adjacent, there are sites of Khasa Rasodia, original structure was known as Kanwarpada ki Ovari (living room for the prince), converted in the 19th century by Maharana Swarup Singh Ji into the special kitchen and Satanavari Paiga that literally means ‘seven and nine bay horse stable” built by Rana Karan Singh Ji in the 17th century, with five bays of the north block still functioning as horse stable.

The City Palace Museum begins with the Rai Angan (Royal Courtyard), the very spot where hermit Goswami Prem Giri blessed Udai Singh and instructed him to build a new city. Rooms along the sides contain paintings (including the one of the Battle of Haldighati in 1576), armory, historical documents and the fire-pit dedicated to the hermit.

We moved on to Baadi Mahal (Great Palace), the exotic central garden palace situated on a 27 m high natural rock formation vis–à–vis the rest of the palace, where the rooms on the ground floor appear to be at the level on the fourth floor. The swimming pool in the middle was used for Holi festival celebration.

In adjoining hall, miniature paintings of the 18th and 19th centuries depict Jag Mandir, Jagdish Temple, the very courtyard and an elephant fight organized by the Maharanas. Because elephants are naturally very calm animals, they were fed hashish before arranging the flights. The fight looked like the two elephants pulling each other by the trunks. It might have seemed innocent, but on most occasions caused elephants deep tusk-inflicted wounds.

Kishan (Krishna) Villa is another chamber in the Palace with rich collection of miniature paintings that portrays royal processions, festivals and games of the Maharanas. However, there is a tragic story linked to this wing of the City Palace – Bhim Singh’s daughter Krishna Kumari drank a fatal cup of poison here to solve the dilemma of two rival princely suitors from Jaipur and Jodhpur, who were both threatening to invade Mewar, if she didn’t marry them.

Approached from the Manak Chowk, Manak Mahal is an enclosure for rulers’ formal audiences and has a raised alcove inlaid completely in mirrored glass. Sun-faced emblems, in gleaming brass, religious insignia of the Sisodia dynasty are a recurring display at several locations in the City Palace; one of these prominent emblems is depicted on the facade of the Manak Chowk, which can also be seen from the outermost court below. The largest emblem is also seen on the wall of the Surya Chopra , a reception area at the lower level. Surya or Sun emblem of the Mewar dynasty depicts a Bhil, the Sun, Chittorgarh and a Rajput with an inscription in Sanskrit of a quotation from the Bhagavat Gita “God helps those who do their duty”. It was and still is customary for the Maharanas to offer obeisance to the Sun facing east, every morning before breakfast.

Many chambers are former living quarters of the Maharanas, each representing a particular king’s style, needs and hobbies. One of the rooms belonged to Bhopal Singh (1930-1955) paralyzed from waist down since the age of 16, his room was equipped with an elevator and made fully accessible for a person in a wheel-chair.

Surya Chopra opens into Mor Chowk (Peacock Courtyard) – a pillared hall with glass and mirror mosaic decorations which are integral to the inner courts’ style. The elaborate design of this chamber consists of three peacocks (representing the three seasons of summer, winter and monsoon) modeled in high relief and faced with 5,000 peaces of colored glass, built into successive niches in the wall area. The Mor Chowk was built by Maharana Sajjan Singh, 200 years after the construction of the palace. The all-mirrored Chitram-ki-Burj and Badi Chorur Chowk are great places to check out too.

The south end of the Palace comprises of Zenana Mahal, the royal ladies quarters built in the 17th century. In 1974, it has been converted into a gallery and now contains lots of paintings depicting royal hunting scenes. Next to Zenana Mahal is Amar Mahal or the Treasure Hall built in the early 17th century by Rana Amar Singh I. Adjacent rooms contain the exhibit of old horse baggies and precious silver objects.

It was almost 13.45 when Nitin finished the tour and rushed me to the Chandra Chowk Gate to get a ticket for a Pichola Lake boat ride. Apparently, tickets sold between 10.00 and 14.00 were Rs.340, while from 14.00 till 17.00 Rs.600. Since I already had the City Palace Entrance ticket, I didn’t have to buy another one, and after getting a boat pass, I said goodbyes to Nitin and ran to the Rameshwar Ghat to catch the last boat (which usually leaves every hour). The Ghat was about 15 minutes walk and I was lucky to make it on time.

Pichola Lake was enlarged by Maharana Udai Singh II after he moved his capital to Udaipur. Now, it is 4 kms long and 3 kms wide and offers a fantastic way to see the city from a boat. There are two natural islands in the Lake, Jig Niwas Island – home to the royal summer palace converted into the world-famous Taj Group-run luxurious Lake Palace hotel (which I didn’t visit) and Jag Mandir Island, where I took a boat trip.

The city looked stunning from the water, built in different, yet coordinated styles, Udaipur looked nothing less than a postcard during the 40 minutes journey to Jag Mandir.

Construction of Jag Mandir, also known as Lake Garden Palace, started in 1551 by Maharana Amar Singh, continued by Karan Singh (1620-1628) and finally completed by Jagat Singh I (1628- 1652). The palace’s history is closely related to the Mughal Emperor Shah Jahan, when he was still young prince known as Prince Khurram. In 1623, he rebelled against his father Emperor Jahangir claiming the throne of the Mughal empire. Faced with danger of getting thwarted in his campaign, he sought refuge in Mewar kingdom at Udaipur where he was given a refuge by Maharana Karan Singh (they say that the courtesy was extended because Khurram’s mother was a Rajput lady). Initially, Khurram, his wife Mumtaz Mahal and two sons, Prince Dara and Prince Aurangzeb, stayed at the City Palace, but later they were moved to Gul Mahal, a palace especially built for Khurram by his host in the middle of the Jag Mandir island, where Khurram remained under Mewar’s protection in 1623-1624.

The irony of this act of hospitality is that Karan Singh’s father was defeated by Khurram in the war in 1614, and his son, Karan, had acted an envoy to the Mughal court where the cordial amity developed between the Mewar and Mughal kingdoms. Following the death of Jahangir in 1627, Khurram bestowed the title of Shah Jahan at the Badal Mahal in Udaipur, before he left for his coronation as the Mughal Emperor. As the reward, Shah Jahan not only restored six, previously annexed by Mughals, districts to the Mewar kingdom, but also presented a unique ruby jewel to Jagat Niwas, son of Rana Karan Singh.

During the Indian Mutiny of 1857, the island became a refuge for the second time, when Maharana Swroop Singh saved a number of European families, mostly women and children, from imminent death from the Indians, by hiding them in the Jag Mandir palace.

You can’t deny that Jag Mandir is impeccably beautiful and manicured island with two separate palaces, Gul Mahal and Jag Mandir, a garden and a pavilion; it is home to an amazing restaurant and a seven-room boutique hotel.

We docked the boat at the Pavilion, an impressive white colonnade of cusped arches, decorated with large elephants carved in stone, four on each side of the entry steps.

The first structure I visited getting off the boat was Gul Mahal. Initially built as a small sandstone palace in 1551, during the reign of Maharana Amar Singh, it was further developed to host Prince Khurram. The Gul Mahal has three circular domed chambers, one above the other, with a crescent of Islam fixed on top of the dome. The columned hall lead to the living chambers where the massive marble slabs affixed to the interior walls were inlaid with colored rubies, onyx, jasper, cornelian and jade. This type of decoration is reported to have been replicated by the Mughals in their Tomb of I’timād-ud-Daulah at Agra, in 1626. The palace is also said to have housed a throne carved from a single block of serpentine, which is presently not traceable. The Mahal is surrounded by a roomy circular apartment built in white and black marble with murals and paintings considered an uncommon feature in Rajput architecture. On the western wing of the palace, this type of design has been repeated in three other pavilions.

Jag Mandir is the main palace which incorporates the Gul Mahal. It has octagonal towers topped with cupolas and houses a labyrinth of reception halls, residential apartments and internal courts, all built in Rajput and Mughal style. The Zenana and Kunwar Pada ka Mahal (The Palace of the Crown Prince) adjoint the palace. Access to the second floor was prohibited, but the main hall represented a very interesting and well assembled historical museum of the Palace and island. A group of Russian tourists was on the boat with me, and because they didn’t speak English, for 30 minutes I had to play a guide and translate every plaque posted in the museum.

Gardens and Palace of the Twelve Stones are other two things to explore on this small island, but I preferred to order a glass of wine and enjoy the views of the lake and the city, as well as the fabulous dining pavilion.

Once you are on Jag Mandir Island, you can stay as long as you want and take any boat heading back to Udaipur. I stayed for over an hour and met two interesting Argentine guys, Nico and his friend,  who I ran into a few more times on my trip around Rajasthan, since we were visiting the same cities at the same pace.

After getting back to Udaipur, I stopped by Fateh Prakash palace, which is now a luxury heritage hotel hosting two very interesting sites – Durbar Hall and Crystal Gallery. After paying Rs. 525 for a combined ticket (Crystal Gallery and a tea/coffee ceremony) and leaving my driver’s license as a deposit, I went on exploring the hotel’s premises. Durbar Hall, built in 1909 within the Fateh Prakash Palace is one of India’s largest and most extravagant royal reception halls, lit by some of the country’s biggest chandeliers. The luxuriant interior is decorated with weapons of the Maharanas and some of their unique portraits. The gallery above the the hall was used by the royal ladies to observe the court proceedings. I was the only person in the hall and judging by the busy staff running back and forth, they were getting ready for some important function. I have heard from my guide that the rent of this room starts at $40,000 per day.

Before I entered the Crystal Gallery, I deposited all my cameras and a phone, since no pictures were allowed in the Gallery. Maybe because of its hefty, by Indian standards, entry price the Gallery was empty, only the voices of two guards at the door, continually bickering with each other, were heard throughout the entire hall. The audio guide was very useful in telling the story of the gallery and origins of some of the peaces. The gallery houses a rare collection of crystal that Maharana Sajjad Singh ordered from F&C Osler & Co in London in 1877 but died before it arrived. It is said that all the packages and boxes containing the crystals remained unopened for 110 years and when they were finally re-discovered, the current Maharana didn’t want to use the objects but built a permanent exhibition showing the best of the items. Now, the gallery consists of crystal chairs, dressing tables, sofas, beds, thousands of pieces of crockery and table fountains none of which was every used.

After finishing the tour, I was escorted to the Gallery Restaurant where I sat by the window, imagining a life of a Mewar princess while waiters served me coffee with cookies.

After exiting through the City Palace’s Badi Pol, I visited Jagdish Temple, a large Hindu temple built by Jagat Singh I in 1651. After climbing elephant-flanked flight of 150 steps and fighting off the herds of men pretending to be the apprentices of the school of miniature painting across the street (a very common trick in Udaipur), I got to enjoy a few moments admiring wonderfully carved double-storied mandapa enshrining a black stone image of Vishnu as Jagannath, lord of the Universe and his man-bird vehicle Garuda.

It was starting to get dark and I was quite exhausted, but there was one thing I wanted to do before calling it a night. I phoned Sunil to come and pick me up by the Temple and after about 15 minutes, we were already on the way to Sajjan garh or Mansoon Palace. Located 9 kms by the winding road, on top of Aravalli hills overlooking Pichola Lake, this melancholy and neglected white marbled palace was built by Sajjan Singh in 1884. It was originally planned to be a nine-storied astronomical center, but after Sajjan Singh prematurely died at the age of 26, the partially built palace was subsequently completed by his successor Fateh Singh who used it as a monsoon palace and a hunting lodge.

The white marble palace (Rs. 160 + Rs 130 for a car) has high turrets and guards regulating each of the towers. The palace has a grand central court with a staircase that leads to many rooms and living quarters. It has been built on marble pillars, which have been carved with exquisite motifs of leaves and flowers. The Mansoon Palace has a unique rain water harvesting structure with storage capacity of 195,500 litres, however, it wasn’t adequate to sustain the palace and it was therefore abandoned. In 1956 Maharana Shri Bhagawat Singh gave Mansoon palace to people of Mewar, perhaps it explains the neglected state of the Palace and its weird Wildlife Sanctuary exhibit inside the main hall.

I did come to check out the palace, but more importantly, I came to witness the glorious end of the day with the sun setting behind the Aravalli range.

After a delicious dinner at the restaurant located in my hotel, with a wonderful views of the lake and a bunch of noisy patrons, I finally went to sleep.

January 10, 2014

I spent the entire previous day checking out the sites of Udaipur and with relative success, taking my time, I succeeded to see most of them. Today, I asked Sunil to take me to a few other sites that are located within 20-30 kms from Udaipur, namely Sas-Bahu Temple and Eklingji Temple.

I met Sunil outside the city walls at 9 am and we headed to Nagda, the old capital of Mewar kingdom, even before it moved to Chittorgarh in 734 A.D. In ancient times, Nagda was known as Nagahrada founded by Nagaditya, the fourth Mewar king, who ruled in 646 A.D. It was a flourishing town studded with Shiva, Vaishnava and Jain temples. In the 15 century, the Guhila king Mokala, constructed a large lake naming it after his brother Bagela Singh. There are several temples around the lake, but the most famous one is Sas-Baku Temple.

The temples were built in the 10th century and Sas-Bahu means “Mother-in-law” and “daughter-in-law” respectively. The temple is dedicated to Lord Vishnu and consists of two structures – one by mother-in-law large structure and one by daughter-in-law smaller structure. Both temples are similar in construction, have an altar, a mandapa (columned prayer hall) with projections and a porch.

The larger Sas Temple has a torana (archway) in its front and it is believed that on ceremonial occasions the image of the Lord Vishnu was swung from the torana accompanied by hymns in the praise of lord. The smaller Bahu Temple has an octagonal ceiling which is adorned with beautifully carved eight intricate female figures.

Both temples are built on the high platform facing east and each of the temples is surrounded by subsidiary smaller shrines – ten around Sas Temple and five around Bahu Temple, all decorated with astonishing carvings.  The walls of the shrine are bare and not engrossed with much decor, but the projections with their exquisite sculptures are mind blowing. The sculptures are made in two steps, first, the images of Shiva, Vishnu and Brahma were carved and then, images of Rama, Balarama and Parashurama were added. The detailed relief figures include male and female deities, regents, amorous panels and scenes from Ramayana. Some temples were better preserved than others, but the entire Sas-Bahu Temple complex was something to explore, especially because there was no one around that early in the morning, not even a guard.

On the other side of the lake, Sunil dropped me off by the Jain temple Adbhut ji Ka Mandir dedicated to Saint Shanti Nath, built during the reign of Rana Kumbha. “Adbhut” means “strange” and it refers to a strange 9 feet idol located inside the temple. When I arrived, the temple was under a full-throttled construction and unless the black ordinary looking sculpture I found inside was the “strange idol” people were talking about, I didn’t find anything interesting to see there. However, on the way out, the construction workers showed me the other, smaller temple which surely served as a substitute to the one under construction. The attendant showed me around what looked like a regular Jain temple with statues of naked saints sitting in the lotus position, except for one thing – in the middle of the room hung a huge bell with Russian inscription “Трудовая Слава 1965” which means “Glory to the Workers” made it 1965. I could have never imagined a Soviet factory or farm’s bell in the India’s Jain Temple. Soviet leaders would have flipped in their caskets had they known that the “no religion” trick didn’t work out. What an irony.

Both places took me about an hour to see, and now we were going to Eklingji – a Hindu complex of 108 temples. The temple complex was built by the Guhila (later called Sesodia) dynasty of Mewar in 934 A.D., in honor of their presiding deity Eklingji (which believed to be the ruling deity of Mewar), in a form of Lord Shiva. The beautifully sculpted temple complex is surrounded by high fort-like walls. The main temple, which dates to the 15th century, was rebuilt from the ruins of an earlier destroyed temple. The walled complex is made of marble and granite and has an enormous double-storied, elaborately pillared hall (mandapa) under a vast pyramidal roof, with a four-faced image of Lord Shiva in black marble. Another temple in the complex is the Lakulish Temple; built in 971, it is the only temple of the Lakulish sect in the whole of India.

I deposited my cameras, shoes and SOCKS in the locker and went inside. It was very cold, about 0C, but the marble floor of the complex was covered with red carpet making it more or less comfortable to walk and explore this very densely built complex. I didn’t count whether there were indeed 108 temples, but there were a lot of them, tightly packed into one city block.  I wish I have hired a guide because after about 10 minutes, all temples blended in together. Nevertheless, it was a stunning place to explore.

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* Photo was taken from the Internet.

By noon, we were already on the way back to Udaipur. Sunil suggested to visit Saheliyon-ki-Bari, a so-called “Garden of Maidens”. I am not a big garden person, unless I am in Japan or China where each garden is a piece of art, but since I had plenty of time, i decided to give it a try. Designed and built by Maharana Bhopal Singh in the 18th century, the garden served as a leisure and relaxing spot for the Rani and her 48 young female attendant who accompanied a princess to Udaipur as part of her dowry. There are four water pools decorated with multiple fountains each of which “sings” in its own way; marble elephants and birds, along with the lotus pond apparently were very popular with locals too. There was a small hideous museum in the center of the garden, designed after Ripley’s “Believe it or Not Museum That Went Terribly Wrong”.

My attention attracted a young, 5-6 y.o. girl, playing on the steps of the museum with a dirty piece of clothes. It wasn’t a doll, it was a thread of fabric. She looked very pre-occupied trying to put her rag to sleep, then cuddling it etc. I didn’t expect her to speak English but I asked an Indian couple to check with a girl if she was there with somebody or if she was homeless, because she did look like one but in India, many children look like homeless. They asked her and she said that her mom was a gardner at the Saheliyon-ki-Bari. I guess she brought her daughter to work but didn’t keep an eye on her because she was nowhere to be seen. I never found out her name, but I asked her whether she wanted to walk in the park with me and take pictures of the fountains and flowers, and she happily grabbed my hand and led me to the lotus pond.

This little pure soul was a true delight to be with and a real model when it came to taking pictures, since she wanted to be in the every single one. We spent over an hour walking together, holding hands and inevitably attracted attention of other garden visitors, who would stop and stare. When I finally explained to her that I had to leave, she found the most beautiful flower in the garden and brought it to me. I was touched and hurt to leave. I looked into my backpack, trying to see if there was something I could leave with her, but all I had was a Lonely Planet travel guide and an apple. So, I gave her an apple and she gave me a huge hug in return.

When I left the garden, I found my car surrounded by homeless children, many were barely 5-6 y.o. There was a girl, perhaps 4 y.o or younger, a toddler herself, carrying a wrapped new born baby. I gave all of them some little money, which I usually avoid doing since it stimulates the beggars’ ‘industry’, and even more children started to run from all over the place. I jumped in a car, closed the door and was about to drive away, but then I remembered that I had a pretty pink hair pin in my make up bag which I kept in a car. I asked Sunil to stop, found the pin and gave it to that little girl with a baby in her hands. Money did make her happy, but this little gesture of kindness, made her shine! I could see her waiving us goodbye till the car turned around the corner.

It was still afternoon, so after Sunil left me by the city gate, I walked along the lake ghats, taking pictures of the phenomenally beautiful views of the lake and surrounding buildings, bridges, shops and daily life of Udaipur citizens. Without looking at the map, I simply browsed around the old town, checking out jewelry and souvenir shops, as well as buying famous Indian body oils. Next to the City’s Clock Tower, I spotted a very interesting looking temple, which turned out to be Vasupoojyaji Temple. The attendant sitting outside on his chair not only allowed me to go inside, but also accompanied me with the stories of the paintings depicted on the temple’s walls, and there were a lot of things to talk about. It was decorated with colorful glass and mirrors from top to bottom, making it look surreal and rich. Multiple paintings in the front hall depicted stories from famous Indian legends and I wish I wrote them down, because I can’t recall any one of them. I tipped the attendant Rs.200 for being super nice and friendly and for spending a good 30 minutes showing me every corner of the Temple.

After finishing shopping, I returned to the hotel to pack my suitcase and get ready for an early-morning departure. For the last time, I climbed the stairs to the hotel’s rooftop restaurant that offered, in my opinion, the best food in Udaipur and the best views of the lake too. Even though, the restaurant’s service was mediocre, I let it slide this time.

The post Udaipur, India. January 2014 first appeared on SvetaNYC.

The best way to get to the sexy temples of Khajuraho is to take a 45 minutes flight from a military airport in Agra. After a morning visit to the Tomb of Akbar the Great in Sikandra, we drove to the airport, where I, simply by chance, went through my belongings and found out that a significant amount of money was missing from my travel emergency cash.
I have a long list of countries I have been to, and depending on the information I gather about my next destination, I usually decide the possible ways of payment while traveling. Obviously, Amex and credit cards with no foreign exchange fees (Capital One, for example) are the best, and ATM withdrawals, despite all, still give you the best possible rate, however, I decided to bring some amount with me in cash. Apparently, somebody wished to give himself a Christmas present by stealing my money. If before, I closed my eyes on beggars, poverty, filth, rudeness and lack of basic manners, the theft made me realize that everything around me was not romantic, poor but kind in heart, it was ugly, permanent and opportunistic.

My Christmas Day started badly, but I didn’t want this incident ruin the rest of our trip. In the end, Dimi and I were going to Khajuraho – the World Heritage-listed group of temples, exhibiting the most exquisite temple art in the world.
The Temples of Khajuraho are unique, because they represent life, love, joy and more importantly, insatiable sexual appetite, uncountable love-making lessons and simply eroticism. It is a stone-carved version of Kamasutra.
All the temples (Western, Eastern and Southern groups) were built in the short span of a hundred years, from 950-1050 A.D. Of the original 85 temples only 22 have survived till today to constitute one of the world’s great artistic wonders.

The creators of Khajuraho claimed descent from the moon and the legend behind the founding of this great dynasty and the temples is a fascinating one. Hemwati, the lovely young daughter of a Brahmin priest, was seduced by the moon god while bathing in a forest pool. The child born out of this union was Chandravarman, founder of Chandela dynasty. Brought up in the forests by his mother who sought refuge from a censorious society, Chandravraman, when established as a ruler, had a dream visitation from his mother. It is said, that she implored him to build temples that would reveal human passions, and in doing so, bring about a realization of the emptiness of human desire. It is also possible that the Chandelas were followers of the Tantric cult, which believed that gratification of earthy desires was a step towards attaining the infinite liberation or nirvana.
Another version of the origin and sexual explicitly of the temples, according to our guide Krishna, was a fact that people at that time became very religious and preferred thier gods to earthy pleasures. Eventually, it led to a significant drop in population and in order to stimulate sexual libido of his people, King of Chandela ordered the Temples to be built.

With the decline of the dynasty, the Khajuraho temples lay forgotten for almost 8 centuries, covered by the encroaching forests, victim to the ravages of the natural elements but saved from the desecration of Muslim invaders. The temples remained largely unknown until British officer TS Burt was apparently guided to the ruins by his palanquin bearers in 1838. Rediscovered, restored and cleaned, Khajuraho temples yet again came to claim their glory.

Our flight from Agra was delayed by 90 minutes, so we arrived to Khajuraho around 3.30 pm. A ten minute taxi ride (Rs 200) later, we checked into our hotel (Harmony Hotel – $25 per night) and headed out to the Western group of Temples, which was 5-7 minutes walk from the hotel.
The Temples close at 5.15 pm, so we had about an hour to run through them. At the entrance gate (Rs. 250 per ticket), we hired a guide (Rs.500 evening rate) – Krishna, who turned out to be very efficient and knowledgeable.
The temples are examples of Indo-Aryan architecture, but it’s their sexually explicit themes that have made Khajuraho famous throughout India and the world. Around the outsides of the temples are bands of artistic stonework depicting the life circa 1050 – gods and goddesses, solders, animals, but most commonly – women and sex.

We started at the Varaha Temple – dedicated to Vishnu‘s boar re-incarnation. Opposite to it, is the large Lakshmana Temple which took 20 years to build. It was completed in 954 A.D. during the rein of Dhanga and arguably is the best preserved temple in Khajuraho. Carvings of seduction, intercourse, ultimate sexual nirvana, naked women, dressed women, three women and one man and the other way around, as well as two men and a horse – you will find anything to please your taste.

Everything is done in an exquisite, sensual but unrealistic to India ways, which I brought up before Krishna. Women, depicted on the walls of temples – full chested with tiny waists and luxurious hips – are more suitable to portrait Colombian women than Indian.

We moved on to the 30.5 meters long Kandariya-Mahadeva temple, which was built between 1025 and 1050 A.D. It is the largest temple representing the highpoint of Chandelan architecture. It is also the best temple to study sexual acrobatics by following 872 statues, each is of 1 meter high, performing every imaginable position. The 31 m-high sikhara, aka linga, a phallic Shiva symbol, is worshipped by Hindus hoping to seek deliverance from the cycle of re-incarnation.

The only other temple we had time to check out was Devi Jagadambi Temple – originally dedicated to Vishnu, but later to Parvati and Kali. It is smaller and more delicately proportioned temple and is home to some of the finest sculptures of Khajuraho. It has the usual three bands of sculptures but the third and the uppermost of there are considered to be the most erotic sculptures of Khajuraho.

We didn’t have time to see everything, but with Krishna’s help, we got a taste and some knowledge of the place and its historic value. We scheduled the next-day 7 am visit to Eastern Group of Temples with Krishna and went to check out Kandariya Dance Show (Rs.500) recommended by our hotel. Frankly, it was a waste of time, as it looked and felt like a high school performance by the students during their reading week.

December 26.
Krishna picked us up shortly after 7 am and drove us to the Eastern Group of Temples – Jain Enclosure (free entry, Rs.900 for a guide). There are several temples there built for three disciples of Jainism.
While not competing in size and erotica with the Western Temples, Parsvanath Temple, the largest of the Jain Temples, is beautiful in its construction and precision. Some of the best preserved Khajuraho images came from there – a woman removing a thorn from her foot, another – applying makeup. Within, a throne faces the bull emblem of the first tirthankara, Adinath.

The adjacent, smaller Adinath temple has been partially restored over the centuries. It is similar to the Vamana temple in the Western Group, with only striking black image in the inner sanctum reminding us of a Jain origin.

There are a few more small temples which we didn’t have time to see because our guide had a prior arrangement and had to leave by 8.15 am. However, we had time to check out a functioning Jain temple located in the Eastern Group, and witnessed a ceremony of the Saint shower, when women followers weren’t allowed to enter the main room, but sat outside on the rugs, while male worshipers were climbing the stairs and pouring water (perhaps, some other liquid) on the head and shoulders of the idol.

Upon return to the hotel, we had a brief breakfast at Zobra, the hotel’s restaurant, and departed to Aurangabad. I have to admit that 18 hours in Khajuraho weren’t enough to get a spirit of this 17,000 residents village, but were sufficient to get a small glimpse of sexual carvings of its Temples.

Pictures.

The post Khajuraho, India. December 2013. first appeared on SvetaNYC.