Wednesday, October 1, 2014

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

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

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

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

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

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

Thursday, October 2, 2014

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

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

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

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

The ball started to roll!

Saturday, October 4, 1014

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

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

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

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

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

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

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

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

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

Sunday – Friday , October 5 – 10, 2014

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

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

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

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

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

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

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

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

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

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

Saturday, October 11, 2014 

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

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

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

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

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

 Sunday – Thursday, October 12-16, 2014

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

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

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

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

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

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

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

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

Fairness?!

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

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

Friday – Tuesday, October 17-21, 2014 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Wednesday – Friday, October 22-31, 2014

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

October medical bill is $93,314.66

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

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.

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.

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.

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.

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.

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.

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.

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

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