The Notes of a Cancerous Girl. September 2014.

I am not a Cancer but I have one. It came unannounced, since I had no side effects except for the nightly drenching sweats, and quietly settled inside my chest. When it grew large and comfortable, it pushed aside my heart and lungs making my body convulse in pain. And this is when it got discovered.

The following notes aren’t going to be my typical travel diary but day-to- day journey through the doctor’s appointments, moods and thoughts while dealing with the disease.  I used to skip news about cancer, considering it irrelevant to me since I came from a family with no cancer history and thought it would never affect me and here I am, 34 y.o. young and healthy female with a 9.4cm x 5.9cm x 8.5cm and growing mass inside my chest.

Monday, September 15, 2014

Sharp and pounding chest pain came around noon when I was on the 6 train going uptown. Just like that! I was standing in the train, waiting to get off at 86th street when I felt my heart got squeezed by iron tweezers.  At first, I thought it would pass after a few minutes as it did so many times before, so I walked out to the street to get some fresh air, I even followed up with my appointment, but as the day progressed I grew more and more out of breath and anxious because pain failed to subdue. I honestly thought I was having a heart attack, so after coming back home, my husband, Dimitris, urged me to email my PCP Dr.M.M. and tell him about my symptoms and seek his advice.

Dr.M.M is always fast to reply and he told me to take some of the anti-inflammatory (Naproxen) which he had prescribed for me a few weeks earlier and painkillers (Hydrocodone/Acetaminophen) to help me overcome the night pains. He asked me to follow up in the morning if I don’t get better. I didn’t know then, but that night was the last quiet night I had before everything unrolled.

Tuesday, September 16, 2014

I woke up with the same chest pain as the day before and it was clear to me and Dimitris and we can’t wait any longer so we came to Dr.M.M. office for a consultation. After examining me and identifying abnormal sound in my left lung, he suggested that it could be some sort of lung infection (pleuritis) which made my lungs swell and press against the heart causing chest pains. Dr.M.M. took 5 tubes of blood for testing and scheduled me for the chest X-Ray at Park West Radiology on W 57th street.

In the evening, Dr.M.M. called to say that X-ray showed a mass in my chest and I must do a chest CT scan with IV contrast first thing in the morning. While pain was getting worse and worse, my doctor’s urgency and concern made us realize that we weren’t looking just at the lung inflammation, it was something way more serious.

Wednesday, September 17, 2014

Dr.M.M. emailed us a reference for the CT scan first thing in the morning and we managed to get an appointment at Park West Radiology at 11.00 am. At that point I could no longer handle the pain without painkillers so I took one Hydrocodone before heading out. Suddenly, my dad called on Skype.

I moved to the US in 2002, leaving my family behind in Belarus. I was always an independent person and after coming to New York, my parents remained dear and very much missed, but practically played the role of the board members without voting rights. I never hidden any facts or life events from them (except for a few, which they would perceive dangerous), but until present day, I have never been sick. On top of everything, last year my dad lost his wife to stomach cancer, a cancer that slowly and terribly ate her alive. She lasted 18 months, traveling from Minsk to Freiburg Hospital in Germany (for what was an illusion of a better medical treatment) every 3-4 weeks, but to no avail. I couldn’t not take this call and the moment my dad saw me on the webcam he knew something was up. I had to tell him about the last few days, describing less of the pain but more of the effort everybody made to get to the bottom of my case and diagnose me as soon as possible. It was a 3 minute chat but it was enough to make my dad very worried. I meant to keep my parents as unaware as possible but it was too late now.

We arrived at Park West Radiology on time for my CT scan. I changed my clothes and was guided to the CT room. The technician inserted the IV and ran a CT scan before using the contrast. After the first time, he came back to the room and injected contrast into my IV (painless) which felt like warm liquid spreading around my veins from neck to, strangely, my genitals. After he finished administering contrast, he asked me to lift my hands up which was something I couldn’t physically do…. But I did, sweating and in pain, in order to get the best possible scan. CT scan took no more than 10 minutes from beginning to end, so around 11.30 am Dimitris and I walked out and headed back home to wait for the news from Dr. M.M.

It is strange how little of the world exist when you are in pain or your thoughts are concentrating on one and only one thing. I was in pain and I was worried but I knew that time would resolve everything. Dr.M.M. called, he didn’t email this time, and asked me to make time and come to his office at 5 pm. He said that he got the results of the CT scan and he had to share them with us. Just from a very brief conversation, I knew it was very serious.

Dimitris and I headed out to his office and met him at the appointed hour. Dr. M.M. had a few clients before us but he took us right away and sat us in his room. He looked VERY concerned and when your doctor is worried, that is a bad sign. He explained to us that they found a mass inside the left chamber of my chest. According to CT scan, it was 9cm x 8cm x 6cm, a pretty large one. However, the CT scan couldn’t tell exactly what it was and neither could Dr.M.M.

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I asked him for the preliminary diagnosis but he kept quiet, saying that i must see a specialist and perform biopsy analysis of the mass in order to ID the disease. Of course, he could throw a few ideas here, but he wouldn’t do it, I guess in fear to scare us even more.

Dr.M.M. recommended to see a cardiothoracic surgeon for a consultation and suggested to speak with the Cardio department at the New York-Presbyterian Weill Cornell hospital. When we got home, we researched a few doctors at NYP Cornell and planned to call them early the next morning.

Did i think at that moment that my life was about to change? No, I still hoped for the better, I still thought it was just an infection.

Thursday, September 18, 2014

After another anxious and long night, Dimitris made a call at 9 am. After explaining the situation, the assistant told us to come and we would be seen by Dr.J.P. right away. And so we did, we headed to 525 East 68th street, NYP Cornell main hospital.

We were accepted immediately but spent about an hour in the exam room waiting for the doctor to come. We brought the results of the CT scan along with the CD and blood work, so the doctor had time to evaluate the images and made his own conclusion of the situation. There are no words to describe my physical and mental state at that point, I was a mess and I needed some words of reassurance, both from my husband and from the doctors.

Nurse came to check my blood pressure and take some notes, and Dr. J.P. showed up a in a little bit. He asked me about my chest pain and said that he examined the CT scan and would want to offer us two options in order to ID the nature of the mass. First, I could undergo a surgical Left Chamberlain Biopsy to remove a piece of the mass for pathologist’s evaluation and it could be done the very next day, or I could try to schedule an appointment with a Radiologist for the needle biopsy which would be less invasive but carries only 60-70% chance of success in identifying the origin of the mass. At that point, I was ready to do everything and we agreed on the surgical biopsy to be performed the next day.

After we finished with the finance department to make sure that my insurance and paper work was acceptable, I was led to the surgery prep room to have EKG and blood work done, as well as to have a consultation with the anesthesiologist who would explain the whole procedure. A nurse was very nice and careful while draining 12 tubes of blood and taking my vitals, the same with the EKG technician who was very considerate to my chest pains and tried to do her job as smoothly and speedily as she could to minimize my discomfort. I was truly impressed with the set up of the exam rooms and especially with the staff, I felt very comfortable and taken care off.

After about 2 hours of prep-tests and a long conversation with an anesthesiologist, I was given a 5.30 am show up time for the tomorrow’s surgery. Relieved that things were moving forward, but terrified by the upcoming surgery, I went home. Tomorrow, I will get my very first scar.

Later in the evening, I received another call from the nurse at NYP Cornell who told us that my surgery got postponed and we should come at 8.30 am instead.

There was another thing i had to do – call my mom in Minsk. I knew sooner or later she would eventually find out, so i wanted to deliver the news and updates myself.

Friday, September 19, 2014 

We showed up at the NYP Cornell on time, the nurse led us to the patient room and ran a few more tests. Dr.J.P. came by to talk to me and explain the procedure one more time, which was very nice and comforting. However, I was in a state of fear and it was written all over my face. Another anesthesiologist came to explain how they were going to first sedate me and then put me to sleep. When everything was ready, they walked me to the operation room.

It was very cold and bright inside with a crowd of people laboring over the different machines. With some help, i climbed on the table and was covered with what looked like a blanket made of the long clear balloons inflated with hot air. It was light and very warm. The moment i got on the table and put my head down, the anesthesiologist inserted something into my IV and right before passing out, i looked at the wall and saw a clock showing 10.05 am.

Next time i opened my eyes, i was still in the same operation room and the clock was showing 10.25 am. I responded to the nurses and doctors calling my name and then passed out for another 2-3 hours in the recovery room. Anesthesia made you feel very thirsty, i finally woke up when i realized that my mouth turned into Sahara desert. I asked for a few cubes of ice to suck on and a few moments later, they called for Dimitris to come and visit me. I was still very delusional and medicated, but it felt good because for the first time in 5 days, i didnt feel anything at all and i could leisurely stay in bed and sleep without any problems. My hopes were severely shuttered when another patient was rolled in and placed next to me.

I understand that people have different reaction to the anesthesia and recover from it in different ways, but this man was simply mad. He kept shouting and accusing personnel in making him blind, but in reality he refused to open his eyes. Doctors and nurses came over to calm him down but even 30 minutes later they couldn’t make him open his eyes or stop screaming. I was transferred to another recovery room to make my post surgical experience as calm as possible.

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Biopsy doesn’t require hospitalization or overnight observation but i did have this option, in case i didn’t feel well enough to go home. After acquiring a prescription for Oxycodone/Acetaminophen (also known Percocet) and Senna (stool softener), I was released from the hospital.

Frankly, the first night at home was not fun. My cut and chest pains were all in one spot and even though i took Percocet, I woke up a few hours later feeling as if a part of my chest was cut out. First time it is always the worst time.

Saturday-Thursday, September 20-25, 2014

The first few days were terrible, i lived from one Oxycodone pill to another, every 6 hours for about 2 days. My biopsy cut ran straight through my left chest chamber adding to already existing chest pain. I couldn’t tell what hurt more, but I guess the painkiller managed to keep both under control. I also developed mild fevers, from 99.5-100.5 F (37.3-38C) which were still acceptable according to my post surgery document but left me worried.

The nights were particularly bad because i couldn’t sleep in any other position but on my back, which caused terrible pains in my neck, shoulders and lower back. I would take a pill and sleep for 2-3 hours, then get up for 3-4 hours to stretch my back and go back to bed in the morning, equipped with another pill. In total, i slept 5-6 hours and the worst thing was to get up from bed. I couldn’t make myself lift my upper body in order to sit up and then get off the bed, it was just terribly painful. You don’t realize that in order to get up, you need to propel your upper body through air by a rough jerk and this is something I had to deal with. On one occasion, i woke up in the middle of the night and spent 2 hours trying to get myself to sit up, this is how scared i was. First 3-4 days after the surgery were the most difficult ones, but my condition kept improving significantly as the days went by. Tylenol PM became my best friend.

On day 3, I was allowed to remove a patch and found a bunch of sticky stripes covering the cut. I was told not to soak the wound but to wash around it with a liquid Dial antibacterial soap, which i did. Water definitely has a miraculous influence on me (maybe because i am an Aquarius), even a short shower made my back pains go away.

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I didn’t leave the apartment, Dimitris and I signed up for the Stanford University online classes and kept watching them on AppleTV. I realized that i haven’t finished the last 2 seasons of The Tudors, so i signed back in with Netflix and spent 4-5 hours a day watching several episodes at once. It was entertaining and it definitely took my mind off everything.

Many things ran through my head during this time. I couldn’t grasp the idea that last Sunday, September 14, Dimitris and I went to see a spectacular Broadway show The Book of Mormon, something we wanted to do for so many months. After the show, we went to an Italian restaurant and everything seemed so idyllic… for the next 12 hours before the pain came. I was continuously contemplating about my past life and things i have done. There were a lot of coincidences and chances in everything that happened. In 2005, when i applied for the US green card, i had to pass a medical exam and if i had cancer then, i would have never been allowed to stay in this country, a country i consider my home now. On July 3, 2014 i got married to a man I love above anything else in the world and simultaneously acquired a medical insurance provided by his work – one of the best med plans in the country. I had a medical insurance prior to marriage but by no means it would have covered all the expenses we were facing at the moment. Lack of insurance is the worst thing that can happen to you in the US. We left for a 7 week honeymoon to visit Oxford – a place where we met and studied, Greece – where Dimitris’ parents live, Belarus – my home and Russia, before flying back to New York. We came back on September 1, 2014, just two weeks before I started to have chest pains, but what if it started before, while we were traveling in Europe? Could i get the same level of treatment, diagnosis, comfort? It sounds very strange, but whatever was happening to me, came timely. It came when i was home and could seek immediate help.

Another thing was dealing with my family. My mom, who is an inspiring, intelligent and very upbeat woman fell into depression. We spoke every day and every day she came up with different causes of my pain, either heart disease or osteoporoses or general inflammation. She failed to recognize that i already had a mass in my chest or she simply decided to ignore it, but i had to wake her up and tell her to stop speculating. We both knew that it was something more serious, and at that time, i needed her to be there for me.

Friday, September 26, 2014

We were told that the biopsy results would be available as early as Wednesday, September 24, however, they didn’t show up till Friday, September 26. Dimitris called in the afternoon to find out and we were told to wait for the nurse to get back to us.

Nurse from the Dr. J.P. office called around 3 pm to tell that the biopsy results came back and according to the pathology report, I had a large diffuse B-cell Lymphoma and should be consulted with the oncologist for a more detailed diagnosis and treatment. Dimitris was on the phone with her but he leaned forward to me and said “This is lymphoma” and at this moment I finally broke into tears.  Past week i went through so much pain that i didn’t have a chance to cry. I consoled my husband, my and his parents, but i couldn’t cry myself because convulsions would kill my heart. But now, I cried. The diagnosis didn’t tell me much since i am not a doctor but i knew it was a type of blood cancer. Cancer?! How could i be diagnosed with cancer?!

Dr. J.P. referred us to a lymphoma oncologist with the NYP Cornell – Dr. J.L. so after we got all the info from a nurse, we reached out to Dr. J.L. office. Apparently, Dr.J.L. wasn’t accepting any new clients so we had to look for other doctors. I called Memorial Sloan Kettering, the #1 cancer hospital in the US and managed to get an appointment with Dr. M.M. on Tuesday, September 30 (in order to do it, we had to get all our papers from NYP Cornell and fax it to MSK). Meanwhile,  assistant of Dr.J.L. from NYP Cornell Oncology department called back and said that even though Dr.J.L. doesn’t take new patients, he saw my results and would like me to come on Monday at 8.30 am to see him. She also scheduled me for a PET CT scan for the next day so Dr.J.L. would have all the info in oder to make a right diagnosis.

I guess Dimitris and I felt a relief and fear at the same time when we found out that I do have cancer. I was finally diagnosed thus the treatment was available, but there were still so many questions. We were really lucky to get two appointments with two best hospitals in the country in such a short notice, we knew that from now on, it should get only better but our life turned upside down.

We spent time to research online more about lymphoma but there was so much information about it and so many types, sub-types that we decided to speak to a doctor before scaring ourselves even more. At the moment, we had to wait till Monday.

Later that evening we’ve got an unexpected call from Dr.J.L. himself who wanted to follow up on my status and see if i had any reservations, concerns or questions. He told me that he saw my charts and tests and that my condition was curable with a high chance of success. He told me not to worry and that he was looking forward to meeting me on Monday.

Today, I was diagnosed with cancer but i was already attended by a doctor who promised to save my life. May i call myself lucky?

Saturday, September 27, 2014

At 1 pm we showed up at 1305 York Avenue for my PET CT scan. I was led into a room without any delays and Dimitris was welcomed to accompany me at all times. Jack, my nurse, checked my blood for glucose (which was fine), inserted an IV into my left arm and injected radioactive fluorodeoxyglucose into my body.

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For the next hour, i was supposed to drink special liquid (which came in three flavors: raspberry, fruit punch or ice tea), one glass every 15 minutes, before heading for a scan. Jack was super accommodating and kind, he did his work very carefully and practically painlessly while chatting me up. After I was ready, i changed my clothes and was brought into the scan room. PET scan allows the machine to detect the radioactivity and produce the cross-sectional images of the body, thus determining how much disease is present. While CT scan takes multiple X-ray pictures of the organs from all the angles. The results of PET CT show my doctor the stage of the disease.

Due to my not obese body type, i was allowed to be scanned with my arms down (i still couldn’t lift them up) and it took about 30 minutes. After we were done, i was given a copy of the CD with my scan and sent back home.

Just another day at the hospital.

Monday, September 29, 2014

Promptly, at 8.30 am we were at the NYP Cornell Oncology department, waiting for our appointment with Dr.J.L. After a bit of delay we were escorted into an exam room where Dr. J.L. assistant, Orel, took all our information and made me complete the forms. It was very nice to meet Dr.J.L., he seemed very cheerful and upbeat. He told us that I have a mediastinal diffuse B-cell non-hodgkin lymphoma located in my chest. I was a typical candidate for this type of lymphoma – mid 30-40 young female. It is not genetical and not acquired by any wrongdoings, it just shows up out of the blue. One and only indication that i had a lymphoma was drenching sweats that i had at night. They started in Oxford in 2011 and continued into present, however, it didn’t bother me since they were getting less and less frequent. However, according to a doctor, night sweats weren’t the indicators either, since this type of lymphoma is a fast growing mass thus couldn’t exist in my chest for the last 3 years.

Dr. J.L. explained to us the general information about lymphoma and gave detailed information about my type, including the course of treatment he chose for us, not the regular R-CHOP, but R-EPOCH, a chemotherapy adjusted to each specific patient which requires a 4-5 day inpatient stay at the hospital, every 3 weeks for 6 treatments. Dr. wanted to avoid or completely eliminate radiation therapy as much as possible, since it causes other types of cancer in a short run. I felt that it was finally a first step forward we made since getting a biopsy. I knew that i can trust Dr.J.L. and he did look like he sincerely cared about my well-being. That was very important to me, not to be another body on the conveyer of thousands of cancer patients.

Dr.J.L. also acquired about our plans to have children. We are newlyweds and obviously we thought about having children in the future. Even though chemo therapy could cause only 20-30% of infertility or difficulties in getting pregnant, it would definitely age my ovaries, at least by 5 years and taking into account a possibility of future treatments as well as a grace period of 2 years after the first treatment when I can’t get pregnant, we were looking at a very dim picture. Dr.J.L. advised us to speak with the IVF specialist at the Ronald O. Perelman and Claudia Cohen Center for Reproductive Medicine at NYP Cornell before starting the treatment. He said, we still had a few weeks time in case we wanted to go through embryo freezing before starting chemo therapy.

Before leaving, Dr.J.L. wanted to take bone marrow biopsy and more blood work. If previously i was innocently unaware of different types of cancer, i was quite familiar what bone marrow biopsy was like – a procedure when a needle goes into your hip bone while you are awake. I saw it many times on TV and it looked terrifying to me. But I had to go through this. Dimitris was asked to leave the room. I lied on my stomach with a pillow under my hips. Dr. injected me with a topical anesthesia, then made a cut on my lower back. I felt nothing till he started to drill (or so it felt) my bone with a needle, deeper and deeper. Dr. asked me to take a deep breath once and then another time, i guess when the needle penetrated into a bone, but frankly, i was so occupied with breathing, i felt nothing or almost nothing. It was so damn scary (the sheet i was lying on was all wet when i got up) but it wasn’t terribly painful after all.

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While I was getting drilled, Dimitris managed to get an appointment at the Center of Reproductive Medicine for Wednesday, October 1, 2014 with Dr. D.S., we hoped to have it sooner rather than later but even a push call from Orel didn’t get us a sooner appointment.

I still had to do my blood work and by now it became sort of routine. However, Sophia, a young lady from Barbados who was drawing my blood, poked me in 3 places with no results – the blood tube remained clear and blank. It took her quite some time to finally find a place on my body where blood was still flowing to collect her 15 tubes of blood.

Tuesday, September 30, 2014

At 2.00 pm we had an appointment at the Memorial Sloan Kettering on East 64th street. We came on-time but waited for about 2.5 hours before being seen by Dr.M.M. While waiting for our appointment, we started to chat with Ed, who is a current 3 year into remission patient of Dr.M.M. Ed happened to be a Lebanese of jewish background who left Beirut in 1968. Just this fact was fascinating because in the last 3 years I spent a lot of time in Beirut and Lebanon and knew and loved this country very much. He told us about his diagnosis and battle with cancer and it seemed very easy. I know that attitude matters more than the real state of affairs and Ed was a sincere version of optimism and nothing but optimism. For the first time in two weeks, i felt that there is an exit to this situation, that people go through this and come back even stronger and happier. Conversation with Ed made both Dimitris and I feel safer and relaxed.

In the exam room, i was first interviewed by Dr.M.M.’s residency doctor from Nigeria. He was very thorough asking many questions and examining me. Dr. M.M. came in about an hour and we had a very detailed conversation which was very similar to the one we had at the NYP Cornell with Dr. J.L. We were given another option to R-EPOCH but it didn’t make a difference to us. Also, MSKCC doesn’t keep you in the hospital during the chemo treatment, they change a pack and send you back home on the same day, but the regiment was the same – 4-5 days, every 3 weeks for 6 treatments. It was a solid second opinion and we needed to make a decision to which doctor to choose and where to undergo the treatment.

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After some deliberation, Dimitris and I decided to go with NYP Cornell. We liked both doctors but i felt that Dr.J.L. made further steps in order to start treatment ASAP and i was comfortable staying in the hospital and not home during the chemo therapy since i didn’t know what kind of side effects i would develop. Also, Dr.J.L. is a chief of the department at NYP Cornell with over 24 years of experience, his chirpy attitude and immediate responses to every our email were re-assuring. Decision was made!

In addition, Orel didn’t lie when she said that the bone marrow biopsy would feel soar but not really hurt, for the few days i was back on Tylenol. It got better with each day and i was able to remove a patch and take a shower.

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Medical bill from September 15-30 is $50,123.87.

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