The Notes of a Cancerous Girl. November 2014.

First chemo treatment caused terrible side effects, left me scared and mentally unprepared. However, I knew that the first step was the hardest one and hoped that it would only get better. The learning curve has never been so steep, and neither was adaptation or acceptance of the conditions and events.

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.

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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.

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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.

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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.

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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”.

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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”.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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

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