The Notes of a Cancerous Girl. January 2015

Friday-Thursday, January 2-8, 2015

Hospital’s 5 day chemo stays are depressing, but even more saddening are hospitalizations between the chemos. I added to my collection two extra stays by now, and I was going to do anything to make sure not to end up in the ED again. The “between the chemo time” should be about fun, family and recovery.

On Sunday, I scheduled an appointment with David’s Bridal to check out some dressed for my mom. I am quite skeptical about the dress’ choices for bride’s mom in Belarus, so we could at least buy something here and forget about it. My mom and I had a really good time at the salon, we pre-selected a few dresses online, accepted the sales-person recommendations and indeed left the salon with an order.  After the Salon, we walked to Harold Square, Macy’s & Victoria’s Secret to do some lingerie shopping.

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Since I’ve completed my 4th chemo, I was having very strong chest pains, different from familiar dull ones that doctor earlier classified as “lymphoma-breaking chest pain”. The pain was sharp, persistent and originated near the heart, making it hard to breathe and at times, I had to lean over to take a full breath of air. I told Orel and after a blood work on Monday, I went for an echocardiogram. When I followed up with Orel a few days later, she said that there was nothing on my echo, except that my blood clot got smaller. In a few more days, pain stopped.

I am continuing to take Lyrica twice a day (I am prescribed to take every 8 hours, but I never wake up at 6 am) and am feeling less numbness in my fingers, it is incremental but still. Another new thing I recorded after the 4th chemo is a loss of eye-lashes and mild inflammation of my eye-lids. Before I started the chemo, I was told that I would loose all hair that I want, but none of what I don’t want. Frankly, whatever body parts I shaved before going into my 1st chemo, have never seen any hair again (woo-hoo), I lost the hair on my head after the 2nd chemo and now, after the 4th, I am slowly but persistently starting to loose my eye-lashes. I know they will grow back, but lack of them makes me look even sicker and sadder, which I am.

On Tuesday, after congratulating my dad with his 60th birthday, I went to TKTS Ticket Booth to buy tickets for a Broadway show. A few days prior, my mom finally decided to go back to Belarus and we bought her a return ticket for January 24. Due to my illness, I wasn’t always there to show her the city or attend shows or exhibits, so in the remaining few weeks, I was trying to do as much as possible. It is hard to attend a show for somebody who doesn’t speak a word in English, but we went to The Phantom of the Opera and she really loved it.

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January 7 is the Orthodox Christmas and we planned to go to a main Russian church on the Upper East Side after completing my blood work. Usually, nurses at the clinic are very skilled, however, sometimes I get a nurse who would either poke my port in a wrong place so it wouldn’t give blood, or make it so painful, that I wouldn’t want to go back. This time around, the nurse was nice but she lost my vials so after returning from a church, I got a call from Orel to come and re-do my blood test. So much for professionalism and Christmas celebration! Needless to say that it was one of the coldest weeks so far with -18C and Arctic wind.

Anyway, after my second blood draw, my friend Charles (Renee’s husband) reached out to me and we agreed to meet up at Maison Kayser on 74th and 3rd Avenue. I haven’t seen him since the day he told me that Renee would no longer participate in clinical trials, and the doctors decided to let her die in peace. It is strange, how even short-term circumstances bring people so close together. Renee and I share the same ward during my first chemo and I feel as if I’ve known Charles for many many years. He lost his wife and I lost a friend, but I was glad he didn’t loose the perspective, he was just as sharp and entertaining as always.

It was also a perfect night to make love to my lover. First time in 114 days! Fight with cancer took all the energy and desire away, but it made my love for him grow stronger in so many different ways!

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Friday – Tuesday, January 9-13, 2015.

5th chemo! I finally start to see the light in the end of the tunnel. All I want right now is for it to pass as quietly, painlessly and fast as possible. I was admitted at 4 pm and placed in the same ward as during my 1st chemo – room 201 in Central. My roommate, Queenie N, turned out to be a doctor at NY Presbyterian. She was a very lovely, high spirited lady with a very large family and a huge group of followers who kept her busy at all hours. The 10th floor opened its North Section with a nice lounge and I got another place to escape.

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Blood work and access to the port was done quickly, but the results didn’t come in till later, so a nurse started the first bag of Rituxan only at 9.30 pm. Dr. J.L. stopped by to check on me and this is when I found out that my dose was increased which led to a very prolonged state of neutropenia after the 4th cycle.  I don’t like this kind of games, I prefer the doctors to tell me in advance what they are planning to do, not to find it post factum on my own.

My first 24-hour pack was placed at midnight at the speed of 43.3 ml/h, with such speed I won’t be released till Wednesday. However, upon my request, all following 3 packs were sped-up to 55 ml/h and I was swiftly released on Tuesday at 1.00 pm.

I was given the same medication as all previous times:

On Monday, I had a consultation with an ophthalmologist. A few days prior I had another curious case of distorted vision (seeing things as through running water) and Dr. wanted me to check my eyes again. Apparently, it was a classical case of a ocular migraine and I was advised to wait till the end of chemo to do anything about it, since cancer treatment could be a cause of it.

Otherwise, the 5th chemo passed the way I wanted it – quiet and without too much stress. First day and night after release still remain difficult for me to cope with – nausea and sense of fear never leave me.

Wednesday – Thursday, January 14-29, 2015.

No matter how many times I have the “first night” after the hospital, it never gets better. It has never got worse than the very first night, but for me, no matter how mentally prepared I am, it is always bad. Frankly, I don’t have any reasonable explanation why I am so scared to be at home, but this feeling is always present. The best option is to be able to fall asleep for a few hours and then deal with the fears and severe bouts of nausea early in the morning. My chemo dosage remained high and expecting WBC to drop and cause neutropenia, I decided to take it slow and easy, stay home as long as I could, don’t work out and spend time with Kuzya.  And this is exactly what I did.

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First few days I experienced the same side effects as before:

  • nausea, and i am already on 3 anti-nausea medications. However, this time it went away after 2 days
  • chest pain, unlike all previous chemos, the pain was mild and very manageable. I hope it is a good sign
  • severe tissue pain. It lasts for 24-36 hours but makes life unbearable. I already described it before, but it feels like my body, both tissue and bones, between the head and mid hip is raw and aching. My doctor said it was the side effect of Neupogen but the pain starts even before I do my first shot
  • lack of appetite.
  • general fear and feeling of misplacement. It is hard to explain but I walk around my apt as if I’ve never been there before, I am afraid to touch things or do anything.
  • Cough and runny nose

On Wednesday night (1/14), 24 hours after completing chemo, and for the following 7 days I give myself Neupogen shots in the stomach. Since doctor removed Vincristine from my chemo treatment and I started to take Lyrica, my neuropathy is getting better and I almost regained the feeling in my fingers, so it does make a bit easier to administer shots.

On Friday (1/16), my mom friend’s daughter, who also lives in NYC, came to visit us. I guess, she didn’t know I had cancer, so for 4 hours I had to wear my wig, pretending that it is my own hair, and play a wonderful host. Gosh, 3 days after chemo, it was hard. After they left, I felt exhausted. I do believe that I learnt cope with the post chemo days better, since I recover sooner and sooner, but I couldn’t push my boundaries.

On Saturday (1/17), as scheduled, my period arrived. Since I started the chemo, my period became almost non-existent and I worried that it would stop all together (as I have read online) for some period of time or for good. So, every period is celebrated as Christmas, with joy. However, this period was very heavy, I couldn’t stop bleeding day and night for 3 days. I am taking blood thinner, Warfarin, so every sign of abnormal bleeding should be reported to Orel or Dr. J.L. But as timely as it started, in the same timely manner it stopped a few days later.

Second stage of post-chemo period (day 7-14) is the time when I start feeling better but my WBC go very low and cells in my stomach, mouth and nose start to divide and re-grow. It causes repeated runny nose, mouth soars, acid reflux and anal fissures. Everything that has to do with the gastroenterology goes wrong.  I developed a strict regiment to keep everything at bay – I use Biotene and Magic Mouthwash at least 3-4 times a day, follow a special diet, take at least 30 grams of fiber and don’t eat food that would cause either diarrhea or constipation and use the regular sitz bath and Diltiazem cream 3-4 times a day to ease the pain.

I was scheduled for a blood-work on Monday (1/19) and Dimitris and I did go to the clinic knowing that it wouldn’t be open due to the Martin Luther King Jr’s birthday. It indeed was closed. I don’t understand how they can schedule me an appointment knowing in advance that they clinic will be closed?! Bizarre!

On Tuesday (1/20) morning, I called Orel to confirm my appointment; since I didn’t have a single blood-work done since my release, exactly a week ago, she asked me to come and have my blood checked. After the results came back, it turned out, not to my surprise, that my WBC was at 0.2, so I was put on a 7-day antibiotic (Levofloxacin) protocol.

On Thursday (1/22) I had another blood-work at the clinic and an appointment with Dr. J.L. Since I am having a chemo-brain, condition when I can’t remember things, I borrowed Dimitris’ habit to write everything down. So every time I see the Dr. I read him my questions from my iPhone and he responds to them and every time my questions become more and more elaborate – “When can i eat raw food?” (2 weeks after chemo is over), “What is going to be my rehab protocol?” (none, I should get better on my own) etc. I gained 14 lbs since I started the treatment so I asked Dr. what he was going to do about it, on which he replied “What are you going to do about it?”. Uh, no help. I am still in a process of looking for a comprehensive post-chemo rehabilitation program.

The same evening, I had to show up in Queens Court. In April 2014, I filed a law suit in a Small Claims Court against somebody who in 2012 borrowed money from me and never gave it back. Accidentally, I bought tickets for the Mariinsky ballet ” Swan Lake” at the BAM the same night so I had to pick where to go and I chose the ballet. I hope my explanation in the Court Adjournment letter was enough to re-schedule the court appearance for another day in the future.

The ballet was amazing. It is my second time seeing “Swan Lake” and both times it was by the best ballet troupes in the World – Bolshoi and Mariinsky theaters. It was one of those performances when you sit and never look at your watch. I wanted it to never end. Exceptional presentation by Xander Parish and Oxana Skorik.

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On Friday (1/23) I got a call from Orel. After each chemo, I was re-tested for Hepatitis B and this time it came back active. She wanted me to start taking a new medication (Entecavir) to keep Hepatitis B in check, and also to see a hepatologist the following week, before my last chemo cycle. On Sunday (1/25) I resumed a mild work-out, doing a few stretches and biking for 30 minutes; I stop eating after 8 pm and hope it will help me to reduce weight in the next couple months. Now, I am 148 lbs and can’t fit in any of my clothes.

On Saturday (1/25) we said hello to my mom who was flying back to Belarus. It was sad, because she was with me for almost 3 months and has been a great support and help for both, Dimitris and I. After she left, our new apartment felt too big for the two of us and Kuzya.

As per Mayor De Blasio and his meteorologists, we were supposed to get a mega snow storm on Monday and Tuesday, so many businesses, clinics and even subway were closed, it didn’t materialized but on Wednesday (1/28) I finally got my appointment with a hepatologist at the 1305 York Ave center. Apparently, I acquired Hepatitis B in childhood, perhaps after a visit to a dentist (glorious USSR childhood with unsterilized tools) but my body cleared the virus and developed a very high immune system against it, so high, according to Dr. Kumar, that I should have never been able to get the Hepatitis B again. Except for one case – chemotherapy, which wiped out my entire immune system and not once, but 5 times. Hence, the traces of virus (20<) showed up in the blood-work. She did a few more blood tests and confirmed that I would have to remain on Entecavir for at least one year after completing the chemo regiment. That wasn’t great news, by now I am taking 8 different pills daily and some of them multiple times a day, and a few more here and there. One of my biggest desires is to be off those pills as soon as possible.

Wednesday evening, my friend Jeff invited me for the high-tea at the posh Pierre Hotel. We had a great time catching up and consuming ton of sandwiches and cookies.

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On Thursday (1/29) I decided to show off my lack of culinary skills and spent all morning making Dimitris kotlets. They turned out to be eatable and even “delicious” from Dimitris’s words.

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Two weeks passed by so quickly and for the first time since I got sick, I was looking forward to my chemo – Last One.

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