{"id":798,"date":"2014-10-31T08:30:09","date_gmt":"2014-10-31T12:30:09","guid":{"rendered":"http:\/\/svetanyc.com\/?p=798"},"modified":"2015-01-30T23:03:27","modified_gmt":"2015-01-31T04:03:27","slug":"the-notes-of-a-cancerous-girl-october-2014","status":"publish","type":"post","link":"http:\/\/192.168.2.119:1984\/svetanyc\/2014\/10\/the-notes-of-a-cancerous-girl-october-2014\/","title":{"rendered":"The Notes of a Cancerous Girl. October 2014"},"content":{"rendered":"

I started this blog in September, 2014 when I was diagnosed with the primary mediastinal diffuse large B-cell lymphoma<\/a> located near my heart. Prior, I had very little knowledge of cancer<\/a>, its types and treatments but when I was finally facing the cruel diagnosis, I realized that the more I knew, the better I would be prepared to deal with it. It definitely helped to search online and read other people’s posts and comments about their ordeals, but some little questions still arose – would power port<\/a> installation hurt, how would chemo<\/a> or post-chemo feel, do I need somebody around me after chemo or I\u00a0can handle it on my own and others. That is why I am writing my blog, to share little details that many people neglect to discuss but for me, the entire cancer battle consists of those little bits and pieces, daily nuances.<\/p>\n

Wednesday, October 1, 2014<\/strong><\/p>\n

Orel, Dr.J.L. assistant called in the morning to schedule my power port installation for Saturday, October 4.<\/p>\n

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<\/a> with Dr.D.G in regard to a potential embryo freezing (medically known as Embryo Cryopreservation<\/a>). 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<\/a> 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.<\/p>\n

Dr.D.G. explained the procedure – daily hormone shots administered at home with every other day blood work and\u00a0transvaginal ultrasound<\/a>, 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.<\/p>\n

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\u00a0of never having\u00a0our 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\u00a0but 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<\/a>, so in the future i\u00a0won’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.<\/p>\n

Dimitris left the decision up to me and i have decided to proceed with IVF.<\/p>\n

At 3.20 pm, I had an appointment for my Echocardiogram<\/a>, which we had to wait for an extra hour and later we met with Orel who checked on my bone marrow biopsy<\/a> and gave me a requested flu shot<\/a>. 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.<\/p>\n

Thursday, October 2, 2014<\/strong><\/p>\n

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<\/a> and Menopure<\/a>), 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.<\/p>\n

At 10.00 am we had to be back to NY Presbyterian Cardiothoracic Unit for my two week post surgical biopsy<\/a> follow-up. \u00a0Dr.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 \u00a0– 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.<\/p>\n

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.<\/p>\n

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 <\/a>(steroids) to have me running with one pill of Nexium<\/a> to keep my stomach at bay.<\/p>\n

The ball started to roll!<\/p>\n

Saturday, October 4, 1014<\/strong><\/p>\n

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<\/a> box from the pharmacy with all the necessary medication and it was one big box!<\/p>\n

\"IMG_2984\"<\/a><\/p>\n

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.<\/p>\n

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.<\/p>\n

\"IMG_5616\"<\/a><\/p>\n

Considering that I already went through biopsy and healing, I was looking for the power port placement<\/a> 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.<\/a><\/p>\n

\"IMG_0536\"<\/a><\/p>\n

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.<\/p>\n

\"IMG_3002\"<\/a><\/p>\n

The scary part was the placement of the port. I was expecting at least full anesthesia, but it was all done under sedation<\/a> and topical anesthetic<\/a>. Indeed, I was sedated but it doesn’t mean I was unaware of what was happening.\u00a0We 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<\/a>. He was of Chinese descent and I lived in China<\/a> 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.<\/p>\n

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<\/a> to the area near the hospital on the Upper East Side<\/a> in Manhattan<\/a> 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 \u00a0I 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<\/a> if i\u00a0have minor pain but that was it.<\/p>\n

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 <\/a>(Tylenol my ass) which took the pain away and made me relax.<\/p>\n

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.<\/p>\n

\"IMG_2989\"<\/a><\/p>\n

Sunday – Friday , October 5 – 10, 2014<\/strong><\/p>\n

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 \u00a0for HL (Luteinizing hormone) <\/em>and \u00a0FSH (follicle stimulation hormone<\/em>)<\/a>, 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 \u00a0– 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<\/a>.<\/p>\n

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.<\/p>\n

There was another issue I had to deal with – to have\u00a0my mom come from Minsk <\/a>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. \u00a0Even 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.<\/p>\n

On Monday, October 6, 2014 \u00a0Fertility 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<\/a>, Nexium and 60mg Prednisone a day, with or without Tylenol PM which I still took whenever I had pain.<\/p>\n

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?!<\/p>\n

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.<\/p>\n

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<\/a> 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<\/a>“.<\/p>\n

We also did a bit of window shopping – we stopped at Cartier<\/a> to check out the watch I wanted and then at Van Cleef & Arpels<\/a> 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.<\/p>\n

I am a big reader, but since I was diagnosed, I spend most of my free time watching TV. I finished watching\u00a0The Tudors<\/a> and started The Borgias<\/a>. Luckily, there are plenty of options and I find it therapeutic. Eventually, I will go back to my New Yorker magazines<\/a> 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”<\/a> and “How to get away with murder<\/a>“.<\/p>\n

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.<\/p>\n

\"IMG_2998\"<\/a><\/p>\n

Saturday, October 11, 2014\u00a0<\/strong><\/p>\n

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.<\/p>\n

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\u00a0skin 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.<\/p>\n

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

After staying in confinement for almost 3 weeks, Dimitris and I decided not to forego our tickets for the New Yorker Festival<\/a> and went to attend the talk by Malcolm Gladwell<\/a> about liars and their catchers. I first read Malcolm Gladwell in my Literature 101 class in Baruch College<\/a>. It was a part from “The Tipping Point”<\/a> 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\u00a0went 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<\/a> and their catchers like Harry Markopolos<\/a>. 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.<\/p>\n

\"FullSizeRender\"<\/a><\/p>\n

At 1.00 pm we had an appointment with a wig specialist at the Bitz and Pieces<\/a>. 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.<\/p>\n

\"IMG_3011\"<\/a><\/p>\n

\u00a0Sunday – Thursday, October 12-16, 2014<\/strong><\/p>\n

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<\/a> 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<\/a>– to prevent premature ovulation.<\/p>\n