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.