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.

Wednesday, October 1, 2014

Orel, Dr.J.L. assistant called in the morning to schedule my power port installation for Saturday, October 4.

At 1.00 pm, Dimitris and I had an appointment at the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine at the New York Presbyterian Weill Cornell with Dr.D.G in regard to a potential embryo freezing (medically known as Embryo Cryopreservation). We met with the doctor and discussed our the options. As a lymphoma patient to undergo the chemotherapy, I have about 25-35% chances becoming infertile after the treatment. Chemo would age my reproductive organs by approximately 5 years, cause an early menopause and with a 2 year waiting period after the first chemo, if everything goes well, I was looking at a 37 y.o version of myself with 42 y.o ovaries. It isn’t a terribly bad situation, since I still have about 60% chances to conceive a child without any difficulties after. However, things could become more complicated if I have to undergo another chemo or other treatment – there would be no more time to harvest and freeze eggs.

Dr.D.G. explained the procedure – daily hormone shots administered at home with every other day blood work and transvaginal ultrasound, then a trigger and a small 15 minutes under anesthesia needle surgery to retrieve the eggs. Since I have a partner, my husband Dimitris, the eggs would be fertilized with his sperm and embryos would be frozen. Apparently, frozen embryos have higher chance of survival than frozen eggs. We were given a package of documents to look through and Dr.D.G. administered a medical exam, took culture and ran multiple blood test. Before leaving the Center, we were scheduled for the next day 9 am class on how to administer hormone shots at home.

Dimitris and I had many things to consider. First of all, whether I wanted to delay the chemo treatment by 2-3 or more weeks. Secondly, we always thought of having children and even discussed it before getting married. Now, we faced a possibility of never having our own biological child or we could make a decision which would give us a chance. Personally, I wouldn’t mind raising an adopted child or a baby of my husband, but I knew that Dimitris always wanted our children to resemble me and this was a deal breaker. I was going through cancer but Dimitris was equally involved in everything, he might not felt the physical pains but he was by my side every step of the way and even though it would make sense to be selfish and start getting chemo immediately, to rid myself of cancer, I decided that I would take a risk of delaying the treatment and going through the IVF, so in the future i won’t have any regrets for letting my chance slip. Of course, I was annoyed and a bit afraid of administering ton of hormone shots on daily basis and then to undergo a surgery, but it would also buy me a few weeks to get healed from the port installation and more importantly, it would give me time to get myself together. Everything unraveled so quickly, I had no time to stop and comprehend the situation as a whole.

Dimitris left the decision up to me and i have decided to proceed with IVF.

At 3.20 pm, I had an appointment for my Echocardiogram, which we had to wait for an extra hour and later we met with Orel who checked on my bone marrow biopsy and gave me a requested flu shot. My bone marrow biopsy was healing nice, it occasionally hurt but was very bearable. We also informed Orel of our decision to go through IVF so that Dr.J.L. could delay chemo and make according planning too.

Thursday, October 2, 2014

Promptly at 9.00 am we were back to the Fertility clinic to attend an hour long presentation on how to administer the hormone shots at home and what to expect after. The doctor explained what two types of medication I will be injecting myself with (Gonal-F RFF Pen and Menopure), every day from 7.00 pm – 10 pm window for about 10 days, then I would “trigger” myself 36 hours prior to the egg retrieval surgery. Every other day, I would have to come to the clinic for a blood test and ultrasound to see how my eggs develop and grow. Ideally, doctor wanted to get no less than 10 eggs 17-20 mm each, but because I was under contraceptive for 3 years, it could take me a few extra days to grow the follicles to the acceptable size.

At 10.00 am we had to be back to NY Presbyterian Cardiothoracic Unit for my two week post surgical biopsy follow-up.  Dr.J.P. saw me, examined the outside of the cut, since it was still covered by the sticky straps, and explained how to remove them  – soak with a sponge in the shower and peel them off. It healed very good and he was happy with the outcome. Indeed, 13 days after the surgery I felt perfectly fine, except for a 5cm scar, which I hope will eventually diminish.

Then, we ran back across the street to the Fertility clinic to speak with an advisor and the nurse who would be responsible for my daily tests and hormone intake. Together, we penciled down the initial plan for the medication and retrieval date, but we knew that all will depend on how fast I produce and grow follicles since my case wasn’t an ordinary one. I took another hormone test which showed that I can start my medication immediately the same evening and after 3 hours in the pharmacy, negotiating between our medical insurance policy and urgency in acquiring the right medication immediately, we managed to find a compromise and start the injections on the same date.

My first 3 days regiment was 225IU of Gonal and 150 IU of Menopure with a follow up blood test on Saturday, October 4. Orel also reached out to advise me to start taking 60mg Prednisone (steroids) to have me running with one pill of Nexium to keep my stomach at bay.

The ball started to roll!

Saturday, October 4, 1014

Friday was by far the most peaceful day in the last 2 weeks, I felt much better, I had no more wounds to heal and it strangely reminded me of what normal life is like. In the morning, we received a Fedex box from the pharmacy with all the necessary medication and it was one big box!

Since we got part of the prescription the day before, I started the injections the night before and it wasn’t as bad as I thought it would be. There is an physiological barrier when you think about injecting yourself with a few needles, but once i’ve done it and it didn’t feel bad, I was comfortable doing it again without fear.

I did as Dr.J.P. told me – soaked up the biopsy cut and peeled off the rest of the bandage. Cut, under the bandage, looked better than I expected, it looked practically healed, and it didn’t hurt anymore. It took me 2 weeks to finally say that this part was behind me.

Considering that I already went through biopsy and healing, I was looking for the power port placement as another necessary procedure but a minor one. We were scheduled for 11 am on Saturday, October 4, but we received a call in the morning asking us to come ASAP since they had a cancelation. We were already up so we just took a taxi and headed straight to the NY Presbyterian Department of Radiology.

I was admitted and set up for the surgery. Nurse took a urine test and blood pressure (they really like taking blood pressure all the time) and had the Dr. of interventional radiology D.L. speak with me about the procedure. Apparently, hospitals in the US stopped using direct veins as a way for the chemo over 20 years ago. Now, they installed so called “power ports” with one or two cushions and a tube, 30-40 cm long that goes straight through the vein. In this case, doctors don’t have to poke your veins all the time, they can attach it safely to the port and medicine would go where it is needed. The port can stay in place for up to 4 years and be removed once it is no longer needed. I was getting a double port to administer multiple medications at once, it was a size of a walnut split in half.

The scary part was the placement of the port. I was expecting at least full anesthesia, but it was all done under sedation and topical anesthetic. Indeed, I was sedated but it doesn’t mean I was unaware of what was happening. We chatted with Dr. about how we met our spouses and we had a lot in common. His wife was his high school classmate and my husband was my post grad colleague at Oxford. He was of Chinese descent and I lived in China for some time, so we shared our experiences. However, I truly wish I was under the full anesthesia. Indeed, after the initial topical shot I felt nothing, but the feeling of him stuffing me like a Thanksgiving turkey was hard for my brain to process. I didn’t feel pain but I felt the port being pushed around and the tube going through the opening made on my throat. I can’t explain why, but physiologically it was very hard to accept.

Surgery took about an hour and after I was brought back to the recovery room, we waited for Dimitris to come back from his meeting with a realtor (a few days earlier, we decided to move from Queens to the area near the hospital on the Upper East Side in Manhattan and were already looking at some apartments). I didn’t feel well after the procedure, my neck was hurting every time I would swallow, I felt dizzy and  I was in definite distress. I haven’t felt as bad even after biopsy, and the port placement was supposed to be just a “procedure” not a “surgery”. I was given an instructions not to take showers for 3-5 days, take Tylenol if i have minor pain but that was it.

I won’t hide – that day was the worst day so far. Not only was I in terrible pain, but also I was running in my head the procedure itself, feeling the port shuffling above my chest chamber. If I held myself calm and alert until now, I literally broke down in tears and fears by the time we got home. Eventually, I took Oxycodone (Tylenol my ass) which took the pain away and made me relax.

It did get better as the days went by. A day later, it was slightly better; on Monday even more. I continued to take Tylenol during the day and Oxycodone at night for two more days. I have read a few blogs about people’s experience with the port and it seems to vary, some felt absolutely nothing and took it as a routine procedure, but others were in pain for weeks. I guess I was somewhere in the middle, but I hated the whole thing. I feared and hated it.

Sunday – Friday , October 5 – 10, 2014

Since we started the IVF program, every other day from 7.00 -8.30 am I had to show up at the Fertility Clinic for the blood test  for HL (Luteinizing hormone) and  FSH (follicle stimulation hormone), and ultrasound. Sunday morning, we took a taxi to the hospital, did all the exams and after scheduled an appointment with a realtor to see a few apartments Dimitris saw the day before. I frankly didn’t like the apartments  – New York City, and especially Manhattan is a real estate horror story. If you like the apt, most likely you can’t afford it, and if you can afford it, it will be rat-infested studio in a basement of a pre-war building somewhere in Alphabet city.

To deal with cancer, I have to have a happy apartment – sunny, spacious and preferably with a balcony. However, our search was just starting so we had our hopes high. We saw one apt on the East 79th street that we both liked so we decided to negotiate and see whether there is a possibility to move in asap.

There was another issue I had to deal with – to have my mom come from Minsk and help me deal with the disease. Since we came back from the honeymoon on September 1, Dimitris took time off from work and was still on hold due to the delay in treatment. Because cancer came suddenly and painfully (which is a strange occurrence since lymphoma is usually a quiet settler), there was no question of him leaving me alone at any time. My mom agreed to come to New York and with all the necessary papers and a letter from the NY Presbyterian Cornell we filed for her emergency visa.  Even though her initial interview day was January 14, 2015, I managed to expedite the date and by Thursday, October 9 she left the US Embassy in Lithuania (Belarus doesn’t have official relationship with the US) with a multiple entry US visa valid for one year. Knowing how hard it is to get a US visa from the former Soviet Union countries, I am forever grateful to the US consul who speedily granted my mom a visa – having her here will definitely be a great emotional, physiological and physical help for me and Dimitris.

On Monday, October 6, 2014  Fertility Dr.D.G. called to update me on my test results and asked me to add another medication to my list, an antibiotic. So, as of now, i am on 300IU Gonal, 150IU Menopure, Azythromycin, Nexium and 60mg Prednisone a day, with or without Tylenol PM which I still took whenever I had pain.

Dimitris was also asked to run a few tests with our PCP Dr.M.M. and have his semen examined. Here is the worst part – as an egg host, I have to go through daily blood tests, double/triple daily hormone shots, ultrasounds and a surgery or two; as a sperm donor, he has one blood test, takes 10 days worth of antibiotic and jerks off twice in a private room filled with porn – once for the sample and once for the actual fertilization. Now, please tell me where is the justice in this world?!

While dealing with the fertility issues, Orel kept in touch with me worrying that my condition might worsen due to the delay in treatment. Apparently, I had quite a bit of liquid collecting next to my heart and it started to get more and more apparent as the days went by. It was getting more difficult to breath and sleep too. However, she gave me clear instructions about when to stop and rush to the hospital, so as of now, I am keeping a very close look at my condition. It would be a terrible loss of time and opportunity to spend 10 days trying to grow your eggs and not being able to retrieve any, but my health is still more important. As long as we knew what we were dealing with and what to be aware of, we thought we were playing safe.

On Thursday, October 9 we went for another blood test and ultrasound. My port surgery was healing very slow and painful but it was a nice and sunny day in NYC so we felt like staying in the city for longer and checking out wig shops. In the end, I will still need one. Of course, I had a perfect idea of having my own beautiful waist long hair cut out and wig made of it, but apparently, it is cheaper and better to buy a pre-made wig. As a person who never dealt with it, it was an eye opening experience – the quality of hair, the type of hair (European vs Indian etc.), the color, the fit, the care and million other things. I was overwhelmed with the information and had to think it over before actually making a $2,500-4,000 per wig purchase. Luckily, my insurance covers the “cranial prosthesis“.

We also did a bit of window shopping – we stopped at Cartier to check out the watch I wanted and then at Van Cleef & Arpels to see and compare their iconic clover necklaces, also one of the top things on my list to buy. Things happened so fast that last 3 weeks seemed like a blur, a painful dark vacuum without an exit. Now, I finally started to wrap my head around the idea that my life will change, but hopefully, only for some time.

I am a big reader, but since I was diagnosed, I spend most of my free time watching TV. I finished watching The Tudors and started The Borgias. Luckily, there are plenty of options and I find it therapeutic. Eventually, I will go back to my New Yorker magazines that have been piling up for the last 2-3 weeks, but now, I discovered the pleasures of historic dramas and TV series, like “Red Band Society” and “How to get away with murder“.

This is a picture of my port and biopsy taken on October 8, 4 days after the port placement surgery. I am still having a hard time getting used to it because it does hurt. Ok, it doesn’t hurt as much as it was on the first day and it definitely gets better, but the cut near the neck isn’t improving much. The swelling and bruising slowly going away, but i still have hard time moving my neck or swallowing.

Saturday, October 11, 2014 

Day 10 of the IVF treatment and we had another blood test and an ultrasound at the Fertility Clinic. This is an important day because at this stage, doctors could say the quantity and size of my eggs. We were hoping to have at least a dozen upon retrieval. Doctors could also tell with a certainty the exact day of retrieval which help us organize everything at home and prepare for the chemotherapy.

Apparently, I had 14 eggs size 10mm or over, which was great. The retrieval wasn’t yet set but I think Thursday, October 16 would be the day and let’s pray for it. Carrying so many eggs and administering so many hormone shots can make any woman go crazy, but I think we are handling it just fine. I am super bloated and feel like the skin on my stomach is reaping, because it is stretched beyond its natural state, but I still manage to negate the mood swings, tantrums and bitchiness of hormones. I guess it is the thoughts of cancer keep me focused and reserved. So far, it is working for us.

As of today, i will start administering another shot – Ganirelix Acetate– to prevent immature ovulation. As if two shots weren’t enough, this one turned out to be a painful one.

After staying in confinement for almost 3 weeks, Dimitris and I decided not to forego our tickets for the New Yorker Festival and went to attend the talk by Malcolm Gladwell about liars and their catchers. I first read Malcolm Gladwell in my Literature 101 class in Baruch College. It was a part from “The Tipping Point” and it blew my mind off. After that, I have been closely following his art and of course, since he lives in NYC, it wasn’t the first time I went to see him speak. Indeed, he is a very talented, well-read, articulate, intelligent etc person and a morning with him, and a few hundred others, was a treat. The talk was about liars like Bernie Madoff and their catchers like Harry Markopolos. I won’t go into details, because I simply can’t, but the resolution was that people are bad at spotting lies or liars, but those who are good, aren’t necessary very likable people to be around. The conclusion Malcolm Gladwell made was he would rather be the Madoff than the Markopolos.

At 1.00 pm we had an appointment with a wig specialist at the Bitz and Pieces. After visiting 4 different wig shops in the city, this one looked like our final stop before we could make a decision and purchase one. The salon’s staff and his owner, Mr. Barry Hendrickson were very attentive to Dimitris and I. Judging by the pictures of the celebs on the walls and Barry’s wide knowledge of cancers and treatments, I guess this is the place where famous and cancerous come together. We explained what we wanted – as close to my natural look as possible – and they came up with some options. It is indeed fun to try different looks and styles, but we settled on one wig and purchased it on the spot. It would require some fitting and styling but it was made of natural hair (sadly, not european) and it looked very close to what I wanted. Price tag $3,050.

 Sunday – Thursday, October 12-16, 2014

The first egg retrieval date was set on Wednesday, October 15, and even though everything progressed as planned, doctors decided to postpone the IVF procedure by a few more days. Indeed, since I was on contraceptive for a few years, my hormones were suppressed and needed extra time to grow to the “accepted” size. As of Monday, blood works and ultrasounds were done daily to monitor the LH level and the size of the follicles, and I was asked to add another shot – Ganirelix– to prevent premature ovulation.

On Tuesday, October 14, Dr.J.L. asked me to come for the ontological follow- up since we last saw him on September 29. He wanted to run some blood work as well and check on me and my condition. For the very first time, they drew blood from my port and I have to admit that it was scary.

I was brought up to a chemo-administration room with 6 chairs – four of which were taken by two chemo patients with bags attached to the polls and by two other people who accompanied them. Dimitris stayed in the reception area since I didn’t think I needed him for my blood test. People were chatting with each other and I felt very uncomfortable. Being on hormones (it finally kicked in) and having your chest cut a few times in the last 2 week, don’t bring the best out of me. I didn’t ask for a separate room but I insisted on closing the curtains and keeping me in some kind of isolation from a man sitting next to me, who unstoppably gulped Coke and coughed, all at the same time. The nurse was super attentive and after examining my newly planted port, she very carefully proceeded while explaining every step of the way. First of all, she gently cleaned the area around port, then she asked me to choose either outer or inner port for use, then told me to breath normally and look away from the port and after the count of 3, I was supposed to make a deep breath while the needle would go in. Indeed, the feeling was strange but because of her kindness and gentleness in administering it, it wasn’t bad. They say, I will eventually get used to it.

After the blood test was done, we waited for Dr.J.L. for another hour. When he finally saw us, he was in his chirpiest spirits as always. He quickly checked on my lymph nodes (I don’t have any) and my tongue. The blood results already came back so he said that because I started taking Prednisone, my cancer diminished and my blood count was normal so I was cleared to proceed with  the IVF. We asked about the results of the bone marrow and apparently, everything was fine. But the main question I had on the tip of my tongue was the stage of my cancer – until now, I didn’t know what stage of the mediastinal lymphoma I was – apparently it was the 2nd since they found mass in both sides of my chest – large on the left side and small but growing on the right. However, I had plenty of other questions written to ask him. Some of them were trivial, nevertheless:

• Contraceptives, when and should I use it after the IVF and during the chemo: Yes, I should take all measures not to get pregnant during the chemo and 1-2 years after.
• Vitamins, should I take any special supplements or vitamins during my treatment to smoothen the side effects? No, I can take a regular Multivitamin such as Centrum but I was not recommended to take anything additional since it can influence the effect of chemo drugs.
• Acupuncture and massage. Should I get a prescription for a medical acupuncture and/or reiki massage to diminish the pain/nausea/vomiting/tiredness/depression and other side effects common for the chemo patients? It should definitely be an option as an alternative method but it wasn’t necessary. I later found out that my medical insurance covers both.
• Botox and skin products like Retinol and Retin A. For the last year, I started doing the Botox injections in my forehead and using the skin peeler Retinol, and I wanted to know whether it was wise to continue doing it or stop for the chemo treatment? I should stop in order to avoid unnecessary complications or infections cause by the Botox injections and products like Retinol. However, I could continue using any other over the counter cosmetic products.
• Prednisone and its side effects. I started taking Prednisone on October 2 (60 mgs + Nexium to cope with stomach problems), however, I developed the metallic taste in my mouth as well as insomnia. I tried taking Tylenol PM or other over the counter sleeping medication, but to no avail. I started to skip one night of sleep, exhausting myself by 4-5 am only to be up at 6.15 am for my 7 am blood work and then sleep all night through the night after. So, it is slowly becoming some sort of schedule. Apparently, it was normal since Dr.J.L.didn’t offer any additional medication to help me fall asleep.

After Tuesday and Wednesday tests and ultrasounds, it became clear that my eggs were ready to be removed, and trust me, I do feel like I am carrying an army of babies – my stomach is swollen and bloated and my mood swings go from sweet to sour in a span of minutes. On Wednesday night, I was given an order to “trigger” the eggs by injecting my last shot – Ovidrel – to induct the final follicular maturity, precisely at 11.15 pm. According to the procedure, I have to have my eggs retrieved 36 hours after administering a shot, that is on Friday, October 17 at 11.15 am.

Thursday, at 6.30 am, we showed up for the pre-op consultation with a nurse. They took blood work, blood pressure and performed the last ultrasound. We were explained the entire procedure once again – I will be under the IV general anesthesia but without a throat tube for about 15 minutes (the duration of the entire surgery) and after 30-45 minutes in the recovery, I can go back home and expect cramps or little blooding or spotting, nothing more. Unlike most of the patients, I won’t be given antibiotic because I was already assigned for a different chemo regiment. Dimitris also got his “sperm donation” instructions which include:

• thorough shower with an antibacterial soap the morning before
• presence of an ID
• abstinence from ejaculation for 2-5 days prior to the schedule retrieval

Fairness?!

After the pre-op appointment, we went to see Raffaele Mollica – a legend in the world of wigs. I still didn’t give up an idea to have a wig made of my own hair and he was a perfect person to speak about it. Indeed, we could purchase something similar to the hair of my style but I needed a 100% natural European blonde hair. We had an 1.5 hours consultation with him and he was happy to accept the challenge. I am yet to visit him once my hair start to fall out so he can cut me bold!

Updates on my cuts: surgical biopsy is fully healed though I am afraid to touch it as it freaks me out; bone marrow biopsy cut closed up long time ago but I feel a pinch here and there when I sit down; and the port is just there, I keep stretching my neck every day to slowly place the tube in the right place, otherwise, I still feel like a Frankenstein.

Friday – Tuesday, October 17-21, 2014 

Friday. We had to show up at the 8M floor of the main NY Presbyterian hospital for the IVF procedure at 8.15 am. Dimitris and I were quickly registered and sent to our departments to get ready for the egg retrieval for me and sperm donation for him. Obviously, those two experiences can’t be compared since I had to undergo a proper 15 minutes surgery under the anesthesia and he had to go to a comfy room for some fun time.

I was checked in, my vitals were measured and IV was installed into my left arm. An anesthesiologist wanted to have another chat with me since I wasn’t a “regular” IVF client but a cancer patient. After clarifying a few questions, he cleared for the surgery.  I had to wait till about 10 am to be called for the pre-surgery and surgery. Meanwhile, the Oncological Room Unit called to confirm that they had a bed for me and I could start my chemotherapy tonight. They told me to wait for the follow up call with the exact hour to show up. It indeed was about to start today.

The egg retrieval surgery took less time and energy than I thought. After the incisional biopsy and port installment surgery, everything in the surgery room looked familiar. I came in, took my pants off and lay down with my legs straight on a special bed, I believe they covered me with a blanket since it was very cold in the room. The anesthesiologist was already administering some drugs and the next thing I remember happened already in the recovery room. Immediately, I was told that they retrieved 9 eggs which was great news, however, they had to call us the next day to inform how many of those 9 were turned into the embryos.

Dimitris came and spent about 30 minutes with me in the recovery after which I was dismissed to go home. I felt some cramps but was definitely ready to go home, since I had to pack my bags and move in to the hospital for 4-5 days.

We arrived to the 10th Central floor of the NY Presbyterian (Lymphoma and Myelonoma Oncology department) at 4.00 pm, very quickly settled into my room 201B with lucky bed by the window and nurses and PA were already working on getting me started- blood work, vitals and so on before starting the first drug – Rituximab (or Rituxan) – medicine that destroys B cells and is therefore used to treat diseases which are characterized by excessive numbers of overactive B cells or dysfunctional B cells. R-EPOCH, my treatment, would consist of one 250ml of Rituximab, 4 packs of three drug- cocktail for 24 hours each and one more pack before I leave. After 7.30 pm they received the blood results and I was confirmed to begin the first pack of Rituximab the same evening. We started at 9.30 pm.

The plan was to start at 25ml/h for 30 mins with vitals check every 15 mins. Then my dosage was increased to 50ml/h for 30 minutes and I started to have a reaction on the drug. It was already around 11 pm and I was working on my laptop and didn’t really pay attention to how I felt but when the amazing nurse Kelly came to check on me 15 mins later, she found me all covered in spots with my throat slowly closing up and preventing me from breathing. The PA was paged and he ordered for the chemo to stop immediately. I was immediately given more Benadryl and other drugs to get me back to normal and I slowly recovered in next 1.5 hours.  A pack that usually is emptied within 2 hours took me a whole 9 hours to complete – at 5.30 am I was finally left alone. It was a sleepless and scary first night, but the good thing was to know that we have to go slow next time and once the pack is over, there aren’t long lasting direct effects.

Saturday. As of now and for the entire stay at the hospital, my vitals and blood would be taken at 5.30 am and I was given Senna, Colace and Prednisone 100mg. Kelly came back at 5.30 am to take my blood test and after the visit from the doctors, I was allowed to start the second part of R-EPOCH – a combo of Vincristine (Vincasar PFS), DOXOrubicin (Adriamycin) and Etoposide (Toposar). Four – 24 hours packs in a row – 96 hours of unlimited chemo at 43ml/h rate, who wouldn’t want that?! The side effects of the pack are constipation, nausea, lack of energy, mouth sores but I was given all other medication in advance to beat the side effects – Senna and Colace for stool, Zofran for nausea, Biotene and Magic mouthwash to wash my mouth every 4-6 hours. First day, I was obviously tired due to lack of sleep, but I stayed very active and positive, seeing that I wasn’t experiencing any side effects yet – drinking plenty of water, walking the hallways with Dimitris and chatting with people were my own additions to regiment.

The same morning, I received a call from the Fertility clinic and they informed me that out of 9 eggs they retrieved, 3 were empty, 3 were undersized and 3 were fertilized and frozen as embryos. We had 3 babies in tubes! However, the nurse said that doctors would try to grow the small eggs for another day to see whether they can fertilize more and would call tomorrow to confirm. The more the better, but we were happy with 3 too.

Sunday. Second night at the hospital was slightly better, since I got about 4 hours of sleep. I still felt good and had plenty of energy but I definitely developed constipation and was given laxative MiraLAX. In addition, I drunk a glass of prune juice and a glass of papaya juice (since long time, I discovered that papaya fruit does miracles to my stomach). At some point I developed almost a warning fever 37.9C with 110 heart rate but after getting back to bed, my vitals went back to normal. At 11 am I was taken off the first 24 hour pack, took a shower and was hooked back on pack #2.

I have to mention that had a very “interesting roommate” from Montenegro with a very large family who always sat by her bed. When she was alone, she would curse and scream at the nurses on every occasion, at some point even for not liking somebody’s voice. She had the 4th stage of lymphoma and she was bed ridden but only for the time her family was around, the moment they leave, she would order and consume the entire lamb all alone. I never saw a sick person eating so much food. By chatting with her, I realized that she was either disappointed with her life, depressed or simply a mean person and she didn’t have any reasons to be – she was in the best hospital, getting best treatment and her entire 25+ people family was there for her. People are so incomprehensible.

I am still scared to share my diagnosis with people, even friends, so only 4 of my closest friends in NYC and some at home in Belarus know that I have cancer. Sophie, Elena with her mom and Jeff, showed up to keep me a company. It is very therapeutical to have them around, even for 30 minutes.

And yes, we got another call from the Fertility Clinic, they managed to save and fertilize one more egg. 4 eggs is 25% better than 3 eggs. We were very happy.

Dimitris stayed with me till very late, he definitely feels lost and lonely in our apartment and I saw how much he didn’t want to leave me, but tomorrow, after 7 weeks of honeymoon and 7 weeks of taking care of me, he is finally going back to work. It kills me to let him go as much as it kills him to leave me, but after a few more days, we will be together again.

Monday. Another sleepless night because a new roommate moved in at about midnight, she was having a hard night and so did I. Despite taking all the preventive medication, chemo finally got to me – at 7 am I developed a dull chest pain and I immediately let the PA Lily know. She administered the EKG and after comparing it with the one they had on file, it looks like this pain is the result of chemo breaking my lymphoma in pieces. If this is true, I can tolerate it for as long as I have to. Today, they added some more medication for me – Bactrium 160mg (antibiotic that treats different types of infection caused by bacteria), Allopurinol 300mg (to decrease levels of uric acid in people who are receiving cancer treatment) and Valacyclovir (to slow the growth and spread of the herpes virus so that the body can fight off the infection).

I still stay pretty active, walking around and having my fitbit work for me, however, I can definitely see the side effects start to creep out – first came weakness after standing for 30-45 minutes, then sense of mild nausea from smelling cooked salmon, but so far, no bleeding mouth soars since I wash my mouth every 4-5 hours. I also got my first bowel movement today, first in 3 days! It is very manageable and I hope it will stay this way. On the good side, Dr.J.L, who apparently doesn’t come to the floor often, showed up to check on me which surprised the entire Onco department and made me feel very special. According to him, everything looked great and frankly, after 4 days in the hospital, I myself realized that I was the healthiest onco patient on the floor, I have no complains.

My new roommate, Renee, turned out to be a wonderful woman. She is 75 y.o. and for the last 2.5 years she has Acute Myeloid Leukemia, a decease which is not treatable, but requires continuous blood and platelets transfusion simply to prolong life. We spend hours talking to each other and I knew that I acquired a friend, she is bright and high spirited despite the fact that she spends most of her life on the hospital bed. I couldn’t have wished for a better encounter.

Tuesday. Finally, with help of ear plugs and sleep mask, I was able to get 6 hours of sleep. My schedule remains the same and very busy –  5.30 am wake up for blood and vitals, pills, breakfast, some work out, change for pack #4 (my last cocktail pack), chat with Renee and floor attendants, Dr.J.L. came again to check on me?! At first, I thought I would go mad from boredom at the hospital, but I barely have any time between routine things and some exciting things that are happening here. For ex. today we had a 1.5 hours musical performance by two musicians (piano by Natasha Paremski and cello) from London Philharmonic.

And tomorrow, the 10th Central has The Nourishing Kitchen cooking classes. I hope to be released tomorrow, so unfortunately, I won’t be able to attend.

I also spoke with the social worker in regard to home aid in case I need some. At the moment, neither Dimitris nor I know how I would feel in the next couple days to few weeks, so we wanted to make sure to get all necessary information and be prepared to hire somebody to stay with me at home till my mom comes.

The best news of today was that we found an apartment in Manhattan on 69th St and 3rd avenue, in a beautiful neighborhood and only 3 blocks away from the hospital. We finally signed a lease and are ready to move in on Oct 30. I couldn’t have been happier and I know I should thank Dimitris that all those things came true, he is the one who did the leg and paper work to secure a better place for me to be. Along with the apartment, came tickets for my mom – she is coming on November 2.

Wednesday – Friday, October 22-31, 2014

Wednesday. Last day of chemo and I was anxious to go home. My cocktail pack ran out at noon and the nurses immediately hooked me on Cyclophosphamide – last of 6 drugs that I was supposed to receive as my R-EPOCH regiment. I got to admit that every “change of pack” procedure is quite ceremonial – nurses come dressed in, what I call, “ebola suites” in groups to match the pack to a right recipient, every their move is calculated, choreographed and precise; by the 3rd chemo cycle I have learnt all the details of each procedure.

Cyclophosphamide, which ran for about an hour, made me really dizzy so I crawled back in bed. When the pack was empty, I slowly packed my suitcase, checked-out with the nurse, got my discharge medication list and left for home.

I have to thank everybody on the 10th floor at the NY Presbyterian for the care and support they gave me, for the knowledge and great attitude they shared with me throughout 6 days I spent there during my first chemo treatment. I have learnt a valuable lesson that cancer diagnosis is frightening, life-changing and to some extend an unacceptable thing, but I have met people whose diagnoses were deadly, but they continued fighting to the end, exploring every mean, experimental drug or even chance. Sadly, their stories won’t be heard by others.

Dimitris was at work, so I took a taxi home alone and tried to settle in our apartment. Now, looking back at the first day and especially night at home, I have to admit that they were the scariest and most difficult hours I have had. Even though, I had a list of medication to take, I was very confused about when and what to take. The list went:

1. Allopurinol 300 mg once a day
2. Bactrim DS Mon, Wed, Fri
3. Docusate Sodium every 8 hours
4. Esomeprazole once a day
5. Prednisone 60, 40 and 20 mg on the 1st, 2nd and 3rd day after chemo (since I was on Prednisone for over 3 weeks, I had to get off it slowly, decreasing my daily dosage)
6. Senna once a day
7. Valtrex 500 mg once a day

As the evening progressed, I became more and more anxious about being at home and not at the hospital where help can come at any time. I was warned that the real side effects of chemo would start after the discharge and I thought I was prepared, but in reality, I was terrified. First came chest pains, from the middle of my chest they started to spread to every chest cavity, getting more and more severe. I went to sleep around 11 pm but couldn’t relax because I thought it would die of heart attack. Then I started to hallucinate, I tried to wake my husband, thinking that our apartment was on fire and this is exactly what I saw – a room filled with smoke. At 2 am I got up because chest pains became unbearable and immediately vomited, luckily the anti-nausea medication worked for the rest of the cycle. Chemo started to show itself in its ugliest and I wasn’t ready. In pain, fearing the darkness of the night, unable to wake my husband and feeling utterly alone, terrible thoughts of suicide kindled in my mind. I clearly remember the track of my thoughts, I knew what I was facing and how many people went through this before me and got better, but I was also very aware that for some reason I couldn’t go through this and ending my life seemed like the only way to free myself from the horrors of cancer.

I didn’t commit suicide but i will remember that night forever.

Thursday – Friday. Since i am writing this 2 months after my first chemo, I dont have a detailed recollection of the events, but I hope I have a good general snap shot of what followed. First 3-4 days after the chemo, I am feeling “dead”. It is a condition when I can’t really tell what hurts because besides chest pains, I don’t really have “pain”, but I feel very VERY sick. Those days I try to stay home, visit my doctor for the blood work and read… and I count hours, because the more time passes, the better I feel. I am grateful for a direct correlation between one and the other.

Thursday. I was scheduled to take Neulasta shot (to bring my white blood cells back to normal) on Friday, and due to its main side effect such as a severe bone pain, I was advised by the PAs at the NY Presbyterian to start taking Claritin the day before, on the day and the day after the shot. Apparently, the ordinary Claritin had a power of diminishing the side effects. Barely made through the day, nausea and lack of appetite became my best friends.

Friday. At 9.00 am, I came to the Dr. J.L. office for blood work, follow-up appointment and a shot. I was in definite state of distress and after hearing about hallucinations and thoughts of suicide, Dr. prescribed me Lorazepam 0.5mg, an anti-anxiety medication. All other side effects seemed pretty normal to him. Orel administered a Neulasta shot and we were free to go.

At 10.30 am, I had an appointment with Raffaele Mollica – the wig master himself- at his studio. I decided that it was the right time to cut my hair. I thought that seeing my long beautiful hair fall would be too traumatic for me, so I took an initiative and let Raffaele cut it in order to make a beautiful wig for me, partially made of my own hair.

The same day, a good friend of mine from Oxford, Abdossalam, was visiting NYC. When I was diagnosed, he was one of the very few people I contacted because he is a great friend AND he is doing his PhD in cancer research, so I really looked forward to seeing him. We met up on the Columbus Circle and had a delicious lunch at the Time Warner Center. He really liked my uneven and shy pixie haircut, but guess what…. I had cancer and i made the first step to fight it, so I felt bold.

Orel called me later and ordered me to start taking antibiotics and constantly measure temperature; apparently, my WBC (white blood cell) count came back very low and Dr. was afraid I might catch an infection, so for the next 5 days I added antibiotics to my list. Later I found out that my WBC dropped to an extreme 0.4 level (normal 4-11) and stayed there for almost a week.

I won’t hide that the recovery from the first chemo, or likely, the post side effects of first chemo were the most severe, petrifying and painful. The Neulasta shot gave me a moderate bone pain. I label it “moderate” because online I read some horrifying stories of “Neulasta’s side effects” and even though pain slowly went through every single bone on my body, as if counting them, I felt it could be worse. Perhaps Claritin indeed worked.

On Sunday,  I started to feel numbness and tingling in my fingers – neuropathy. It is the weirdest feeling when your fingers loose their sensitivity and you no longer can control them. Now, two months later, neuropathy consumed all my fingers to the extend that i can’t button myself, type, cook, feel cold or hot or open a face cream jar. I am trying to live with it but i am aware of my “disability” pretty much at all times. I describe it as if I had prosthesis instead of my real fingers. Not only are they numb, but also they hurt, all the time.

Another side effect was severe acid reflux; it went to a point when no matter what I ate or drunk, even water, i would have spasms in the back of my jaws as if I was eating a sour apple or suck on lemon. My stomach was totally messed up. I was prescribed Nexium and in the long run i think it helped.

Monday. We got a new apartment, so as soon as i started to feel more or less capable of doing things, I spent time packing the house and organizing things. One of the strangest and scariest side effects happened to me that evening. I was scanning some documents for several hours and after I was done, i turned TV on and found out that I can’t see the screen. At first, I thought my eyes were tired from the paper work, but then, I looked around myself and realized that about 50% of my vision was gone. I was home alone and it was after 6 pm and despite not seeing the phone screen, I managed to call an on-call doctor who told me to immediately go to the ER where they would administer an MRI to see whether cancer spread into my brain and most likely do a brain biopsy too. By the time I hang up the phone, vision returned. I started doubting the chemo protocol assigned to me, what kind of drugs should i consume to lose vision? Was cancer treatment worth an ability to see? For the next week, my vision came and went a few times eventually returning to normal.

Tuesday – Friday. Blood work follow-up confirmed a very low level of WBC, and my doc was hoping Neulasta would finally kick in, which it did, on Friday. Meanwhile, the rest of the week, I spent packing, sanitizing the apt and slowly recovering. My appetite returned, though my sodium level dropped so I was asked by Orel to stop drinking water, which I drunk about 4 liters a day, and switch to Gatorade.

Even though, I was diagnosed in September, October was the month when I had my IVF, first chemo therapy, first side effects of chemo. It would turn out to be one of the hardest months for me but now, it is finally over. Those moments, hours and days are finally in the past.

October medical bill is $93,314.66

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

Pictures of Sam Sands Dunes and Jaisalmer. 

Sunil and I left Jodhpur at 6 am because I have booked an overnight camel safari out of Jaisalmer (280 kms away) and had to be there by 1 pm to register and check-in. Nico has decided to come with me on the safari, since he was planning to do it anyway, but he left Jodhpur by bus a day before. Jodhpur stands on the border of Thar Desert and we were about to enter one of the deadliest places in India. Jaisalmer, the India’s most western outpost is located in the middle of Thar desert and offers one of the most authentic desert safaris in the region, or so they say. I figured to give it a try and spend at least one night in a desert.

Almost immediately after leaving Jodhpur I could see the difference in scenery, the trees were becoming more scarce, while white sand and desert-like plants were getting more predominant. It is a wonderful and serene feeling to witness sunset when driving in the desert. When we finally approached Jaisalmer around noon, a car accident on the main road prevented us from driving through to the city (because apparently, there were no other roads and traffic started to pile up at the scary speed), so Sunil recommended me to have somebody from the agency come and pick me up by a motorbike. Luckily, they were willing to do so, but when a guy came to get me, we figured out a better, dirt-road option to the city.

I used a highly regarded agency, Sahara Travels for my two days/one night safari (Rs.1350), originating right outside Jaisalmer fort. When I arrived, Nico was already there and so were 4 other European students doing an exchange program in Ahmedabad, but exploring India on the weekends.  Because our overnight camp was located in Sam Sand Dunes, about 42 kms away from Jaisalmer, we started our trip in a jeep at 2 pm. About 15 kms to the west from Jaisalmer, we stopped to explore a long abandoned village, which to my knowledge didn’t present any historical value. After browsing for 10-15 minutes, I returned to the car and asked the driver/guide what was so special about this place and what was it called? Apparently, it was a famous cursed village Kuldhara and the story of this place is next.

Established in 1291 by Paliwal Brahmins, Kuldhara was the main village in a group of 84. Despite arid desert and scorching summers, Brahmin community was successful in growing crops and became prosperous. However, one night in 1825 all the people of Kuldhara and other 83 villages disappeared, simply vanishing in the dark. What would force them to leave their settlement after 7 centuries? Legend says that the king (or minister) of ruling kingdom, on the way to somewhere passed Kuldhara. By some chance, he saw the young daughter of the village ruler and fell in love. He asked for her hand but was denied because he wasn’t of the same caste as Brahmins. So, in order to force his way, the king gave all citizens of 84 villages a notice that if they don’t give up the young girl, he would punish all of them. The leaders of the villages got together and in order to preserve their honor and purity of Brahmin caste gathered all the citizens and left their settlement forever. Until today, nobody knows what happened to them and where they settled after, however, there are rumors that they founded another city near Jodhpur in Rajasthan. Despite the abandonment, the villages weren’t re-occupied and the houses weren’t stripped for materials, because, before leaving, the Brahmins sent a curse that anyone who would occupy their land would die. Until now, all the villages stand there alone, cursed and with all their inhabitants long gone. In different state of dissolution, some houses look nothing more than a pile of rubbles, while others still preserved their walls and indoor planning.

After about 20 minutes in Kuldhara Village, we continued further into the desert. At some point, we stopped to switch the vehicles and instead of the jeep, we all climbed to our own personal camels to proceed to an overnight camp. I have ridden camels before, in Egypt and I really enjoyed it. At first, it seems scary and the height of the animal doesn’t make it any better, however, feeling the slow pace and good nature of your ride, makes it an enjoyable adventure. After about 15 minutes of photo-craze, I finally relaxed and enjoy the beautiful ride in the dunes. Later, speaking with a friend who did an overnight safari as well, I learnt that they went to a place that felt as remote as NYC in the afternoon, so I was very lucky to have no one but our caravan of camels mounting the dunes of Sam Sands.

After about 1.5 hours of riding, we reached the camp where our driver/guide was joined by other 3-4 men, excluding the camel boys who accompanied us throughout the ride. While our group was happily and freely running up and down the dunes like children, the camp attendants prepared our beds (6 double mattresses next to each other with 6 heavy blankets on top) and were in the process of cooking dinner on the camp fire. A bedouin came to our camp and offered us to buy beer, apparently, we weren’t that far from the civilization, as i hoped, and here I found out that my wallet was stolen. Whatever bad could happen to me, happened. After the rape attack in Jodhpur, theft of $1,000 in Agra, that was just another thing missing from my list of misadventures in India.

Despite all, we had a very delicious and quiet dinner by the fire; conversations, exchange of experiences and just blank star-staring filled the evening way past 10 pm. I went to sleep and even though, I am not big on camping and always have hard time sleeping outside (especially in +0C and wrapped in a dirty blanket), the night was cold but comfortable. Nico was the first to get up even before the sunset to capture some pretty good shots.

January 14, 2014

After the breakfast, we mounted our rides and proceeded back to the pit stop about 1- 1.5 hours away. On the second day, every one felt as a professional camel rider with many years of practice. It is definitely the kind of experience you want to repeat over and over again. I wish I had time to do a multi-day safari.

Upon reaching Jaisalmer around noon, i spent a few hours dealing with the police in regard to my lost wallet and by the time I got to my hotel, I had neither desire, nor mental strength to explore the city. I stayed at the wonderful hotel located just outside the Fort, Shahi Palace Hotel. The owner and personnel at the hotel were friendly and very accommodating to my needs – the usual extra blanket and a heater as well as plenty of hot water to shower. The front desk also arranged a masseuse to come to my room (Rs 900), but I had to cut our session short because it was still too cold in the room and because she was old enough to be my grandma and I felt bad for her. After one month of non-stop traveling around India, I thought Jaisalmer was a perfect spot to take a moment off and breath the desert air without rushing to see other places. That was exactly what I did. I occupied a beautiful balcony-table at the rooftop of my hotel overlooking the entire Jaisalmer Fort, ordered dinner and some beer and enjoyed the great views and chats with other travelers staying at the hotel.

January 15, 2014

Jaisalmer, lying in the heart of the Thar desert, was established in 1156 by a renowned warrior of Bhati Rajput clan – Maharawal Jaisal Singh, hence the name Jaisalmer means “Hill Fort of Jaisal” and it took him 7 years to build the original fort. The ruling family of Jaisalmer belongs to Bhati clan of Yadu Rajputs of Chandravanshi (Lunar dynasty) race who claim to be descendants from Lord Krishna, the defied hero who ruled at Dwarka. The city’s early history was tumultuous, partly because its rulers relied on looting as a source of income. In 1293, the Bhatis raided a caravan filled with treasure which headed for Delhi, thus enraging the then Delhi ruler, Ala-ud-Din Khilji. Bhatis defended the fort for seven years until Ala-ud-Din managed to breach the ramparts and enter the fort, sacking everyone and forcing all Jaisalmer citizens to commit jauhar (self-immolation). Ala-ud-Din managed to hold the fort for 9 years, before loosing it to Bhatis. Later in the 14th century, Sultan Feroz Shah also besieged Jaisalmer, after the Bhatis once again raided his camp near Ajmer. This siege led to yet another jauhar. After just two centuries from its foundation, the city became deserted again.

However, from the 16th century onward Jaisalmer started to prosper due to its strategic location along the traditional trade route traversed by the camel caravans of Indian and Asian merchants. The route linked India to Central Asia, Egypt, Arabia, Persia, Africa and the West. The reign of Rawal Sahal Singh marked a prosperous epoch in the history of Jaisalmer, as well as great relationships with Mughal emperor Shah Jahan (gained by a nobleman called Sabala Simha for his services in Shah Jahan’s Peshawar campaign). In the mid-17th century, Maharwal Sabal Singh expanded the Jaisalmer kingdom to its greatest extend annexing areas that belong to the administrative districts of Bikaner and Jodhpur. However, with the accession of Rawal Mulraj in 1762, the fortunes of the state rapidly declined and most of its outlying provinces were lost. Political alliance with British Raj in 1818, along with the development of ports, particularly in Mumbai, and railroads, brought the end to a caravan industry of the region, thus rendering Jaisalmer a drought-prone desert backwater. Sadly, only the wars between India and Pakistan in 1965 and 1971 put Jaisalmer back on the map due to its strategic boarder location, but luckily for us, the city was redefined as a tourist destination because it indeed has much to offer. The Golden city once again rose from the sand.

Unlike most forts in India, Jaisalmer fort is a living one. This breathtaking, mysterious, massive, mirage-like citadel is inhabited; it contains living streets, temples, a royal palace, restaurants,  guesthouses (however, I wasn’t recommended to stay at one) and 3,000 people (mostly Brahmin or Daroga communities) who actually live there. Huge walls encircle the fort that came back from the dead in the past half-century. It is a remote, hard to reach place, but it is definitely worth a visit.

After a great night sleep and hearty breakfast, I left the hotel to see the city. The fort itself, contains 3 layers of walls, 5 kms in circumference. The outer or the lower layer is made of solid stone blocks and it reinforces the loose rubble of Trikuta hill, on top of which the fort was originally built. The second, or middle, wall snaked around the fort. There is a gap of 2-4 meters in between the second and third walls, known as Moti and used to move the guards around the fort. The uppermost part of the fortification consists of merlons (kanguras), gun holes and balconies (jharokhas) From the innermost, or third, wall the Rajput warriors once poured boiling oil and water as well as massive blocks of rock at their enemies, who would become entrapped between the second and third walls. The defenses of the for include 99 bastions, of which 92 were built between the period of 1633-1647.

I entered Sonar Quila (another name for Jaisalmer fort) from its east side, near Gopa Chowk, passed through 4 massive gates along the zigzagging route to the upper part. Truly a living fort, its winding lanes looked alive and animated already at 8 am. Since Jain Temples are open only from 8 am till noon, I thought it would be a smart idea to head there first. Along the way, while taking photos of a beautiful craft shop, I met a Japanese guy, Shuhei who became my travel partner for the next few days. Apparently, after quitting his job in Japan, Shu decided to take time off and travel the world. India was his first stop and he was really enjoying his time there.

We both headed to Jain Temples, after paying Rs.200 admission and camera fees, removing our shoes and leather objects, we collected our audio guides and went inside. Jain Temple complex consists of 7 carved temples built between the 12th and 15th centuries. They all are connected by walkways, staircases and corridors, making it an adventurous place to discover. Resembling to a large extent the Jain Temple of Ranakpur, yet, they were very different; built of soft yellow stone, they beautifully blended in with the rest of the Golden city. I wish the audio guides worked, but they kept automatically switching from one language to another thus serving no use to us.

The first Jain temple we entered was Chandraprabhu temple, built in 1509 it is dedicated to the eighth tirthankar, whose symbol is a moon. The fine mandapa and intensely sculpted pillars, forming a series of toranas were beautifully and intricately carved, however, they look very similar to the lavish Jain temples I have visited before in Udaipur and Ranakpur.

To the right of Chandraprabhu is the quiet Rokhabdev temple, with the traditional Jain sculptures placed around the walls and pillars skillfully carved and decorated with gods and apsaras.

We visited the Parasnath, located behind Chandraprabhu temple and exited through a door to the south, which led to small Sheetalnath, dedicated to the tenth tirthankar, whose image in the temple is composed of eight precious metals.

Browsing around and trying to follow the guidance of our broken audio guide, we stumbled on Sambhavnanth – the courtyard where Jain priests grind sandalwood in mortals and where many locals come to pay their tribute. We were lucky to witness not one but two different ceremonies at the Temple, both were, what it seemed to me, family affairs.

There were a few more places to check out at the Jain Temple Complex and first of all the Gyan Bhandar (underground library), Shantinath and Kunthunath Temples. After about 1.5 hours spent there, both, Shu and myself were overwhelmed by all the carvings and endless passages. When we finally left the Jain Temples, we collected our shoes and headed straight to the Royal Palace. Even though, the fort’s palace looked magnificent and surreal rising above the mega fort, many people I spoke with, neither ever visited it nor advised me to do it, claiming that there was nothing there to see, especially after all other Rajasthani palaces that I’ve been to. However, with plenty of free time to walk and explore the fort, Shu and I decided to give the Palace a try and it was a wonderful 2 hour tour around the Raj Mahal.

Rs.300 admission fee and Rs.100 per camera allowed us to start the tour. There were no guides on the premisses, so we had to use the audio guides which were useful but a bit boring. The elegant seven-storey Raj Mahal, built on top of the 4th gate Hawa Pol, towers the main square of the fort. Guiding us from room to room, the audio recording filled in the knowledge gaps about the Jaisalmer history and kings, introducing us to their armory, coronation process, genealogy and showing a few rooms that preserved their appearance since the time of ruling kings – Rang Mahal, the bedroom of the 18th century ruler Mulraj II, a gallery of finely wrought 15th-century sculptures donated to the rulers by the builders of the fort’s temples and absolutely spectacular views of the fort from the rooftop. Given that we weren’t constrained by time and that Raj Mahal was nearly free of visitors, Shu and I took our time to leisurely explore every room and corner of this incredible palace.

Before exiting the Raj Mahal, we checked out a fascinating jewelry shop recommended in every travel guide – Hari Om Jewellers. The owner, and second generation of jewel master showed us some incredible rings with the finest carvings of pretty much everything, from India’s top 10 gods to all sights of Jaisalmer or ever Rajasthan. I wish I had enough cash at that moment to buy a souvenir but after I have been robbed, I had very little spare money.

From the top of the Raj Mahal, Shu and I spotted a rooftop restaurant so we headed there to have lunch. It was a lovely place to sit on the sun, enjoy the fantastic views of the fort and the city below, converse and get to know each other better. Shu was a true Japanese gentleman – shy, thoughtful and intelligent, and at the same time, courteous and funny. I really enjoyed his company and felt really lucky to have met him. After traveling in India, I realized that a company of a man is mandatory in order to stay safe and sane, in addition, Shu was a very interesting and nice person to travel with and share observations.

Having spent half day in the fort, we decided to go down to the city and check out the restored part with the bazaar and famous fairy-tale like Jaisalmer Havelis. Old Jaisalmer town is a complicated labyrinth of tangled streets, so we had to use map.google and people’s directions in order to find Patwa Haveli. Located on the narrow street, Haveli is a complex of five buildings built by 5 merchant brothers between 1800 and 1860. The history of the Patwa Haveli dates back to early 18th century, when the patwas were struggling to set up their trade and business. On the advice of a priest at the Jain Temple, the patwas brothers left Jaisalmer with the intention of never returning (they were told by the priest that their business would never succeed in Jaisalmer). The legend has it that the patwas were immensely successful thereafter and their business spanned across banking and finance, silver, brocade and opium trade.

Eventually patwas rose to such heights that they were called upon to finance the state deficit. This brought the clan back to their old city. The then head of the family, Ghuman Chand Patwa, decided to give each of his five sons a separate and elaborate mansion, ignoring the advice of the priest. Thus came up the five grandiose havelis facing the Jaisalmer Fort.

Unfortunately, the lives of the patwas took a different turn upon their return to Jaisalmer and their fortunes started dwindling. Consequently, they had to abandon the city-state again, leaving the havelis at the mercy of care takers. The care takers became the owners in the course of time and decided to put the havelis up for sale.  Mr. Jeevanlalji Kothari, native of Jaisalmer, purchased the first haveli, hence it was renamed after him Kothari’s Patwa Haveli. One the first haveli is open for public and presents its visitors the glimpse into the life of the rich Jain merchants.

Shu and I, paid the admission fees (Rs. 150 entry and Rs. 70 per camera) and hired a guide (Rs.100) to personally introduce us to the lifestyle of rich and famous of the 19th century’s Jaisalmer. A wonderful haveli was delicately built from sandstone by the best masons of the time. It indeed represents a state of art, both inside and out. Gorgeously carved stone doorways, jalis, screens, balconies and turrets along with a sophisticated and adequate museum inside, made 2 hours to fly by. Our guide was an interesting character, whose name I wish I recorded; he was also a landowner and a farmer from a place on the boarder with Pakistan. Good natured and intelligent, he shared his great sense of humor and well as his opium recipes with us. I highly recommend hiring a guide for a tour around the haveli, since every room had its secrets and interesting story attached to it and many, even simple objects, displayed in the Haveli, take on very different meanings once they story is told. My favorite was an opium trade room, for obvious reasons.

It started to get dark and our guide escorted us to another Haveli – Nathmal-ki-Haveli, located just a few blocks away. Built in late 19th century, this haveli used to be a prime minister’s house and until now is partially inhabited. The part shown to us was mostly a craft shop with some very interesting souvenirs, however, our guide told us to pay attention t the room itself. Apparently, it was built by two brothers who couldn’t settle on one design for the house, so they split the house and built each side the way they wanted, except for this particular room because it was a shared one. They found a solution by dividing the room in the middle and decorating each half the way they pleased, thus creating this interesting hall with two sides looking nothing alike.

It was already dark when we thanked our guide for such an interesting tour and headed back to Shahi Palace hotel. Shu stayed in the hotel in the Fort, but I invited him to come and have a dinner with me at the roof-top restaurant in my hotel. It was a cold evening but the full moon reflecting off the Golden city made it an idillic setting to enjoy the night.

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