The Notes of a Cancerous Girl. February 2015

Friday-Tuesday, January 30-February 3, 2015

Is this the end? Does the last chemo qualify as the end of the treatment? Does it end the cancer? Will it be the beginning of a new life? Is this the last chemo? Is this the last treatment? There are so many questions, but for the moment in time, I am taking a deep breath believing that this is the end.

I didn’t wait for the last cycle, my superstitious self was afraid to look that far forward though, of course, I knew the day – Tuesday, February 3, 2015. And the day has come, at last.

The New York Presbyterian Weill Cornell admission office called at 8 am when I was still in bed and asked me to come in as soon as I was ready. Dimitris and I headed over at 9.30 am and were promptly checked in and placed in a ward 207A Central. Out of 8 times in the hospital, I spent most of my time in the Central. I knew the protocol and the usual routine – the nurse would access my double port, fix the catheters, draw blood and wait for the results.

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Meanwhile, one of the PAs dropped by to acquire about changes in my condition. By now, she is well aware of all the new medications/conditions/appointments I acquired in a two-week break we haven’t seen each other. When the blood results come in, a PA will issue an order for chemo – first for Rituxan and then for the first 24 hour pack – Doxorubicin and Etoposide.

I didn’t get my first pack before 3.15 pm, so I spent time walking around the 10th floor. Logging 10,000 steps a day is my goal when I am in the hospital. I move and it makes me feel accomplished at least in something. Before hooking me up on Rituxan, I was given the usual Tylenol, Benadryl and Aloxi (the 72-hour anti-nausea medication). Zofran wasn’t working for me anymore, they call it a cumulative effect of chemotherapy. First time on Rituxan scared the hell out of me, so I prefer to spend time with my first pack in bed, plus Benadryl makes me really sleepy, which helps, it speeds things up.

At around 7 pm, I was placed on my first 24-hour brown pack, at the rate of 43.3 ml/h, which is the hospital standard but by then, I already requested to speed my packs up to 55 ml/h starting from the pack number 2. It cuts the time by 5-6 hours per pack. Along with my regular medications (Nexium, Colace, Lyrica, Bactrim DS, Valtrex, Entecavir, Senna, Ambien, Warfarin, Diltiazem cream, Cilest, Biotene and Magic Mouthwash), they added magnesium to my list.

On the second day, I got acquainted with my roommate, Yekaterina and her husband Igor. Yekaterina is a 78 y.o. newly diagnosed leukemia patient. She and he husband immigrated from St. Petersburg 30 years ago in order for her to get a free kidney transplant in the US, after which she went to get a pace-maker, and brain aneurysm and now, cancer; while her husband, unable to learn English and find a job became her full time caregiver. On Sunday, they celebrated their 51st wedding anniversary and I can’t describe in words how much love, care, passion and most importantly humor they have for each other. Yekaterina, despite her severe health condition, age and nearly deafness, was always courteous and merry. I was even more amazing to find out that Yekaterina, as a child, survived the entire siege of Leningrad in 1940s.

Meanwhile, I continued to walk, read, watch Stanford classes online, I made myself busy. Luckily, this time around, I didn’t have many side effects I experienced during my early chemotherapies such as chest pains, weakness, constipation, only nausea. I made new friends in the hospital, who were on the same protocol as me, only a few cycles behind. We all discussed the common side effects and share advices on how we cope with them at home. Indeed, my cancer is not your cancer, everyone is unique and reacts to everything differently.

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On Monday, Dr.J.L. for once was an on-duty Hospital doctor, so he came to check on me with 6 other residents. Frankly, by now I have no other questions but about the recovery and rehabilitation process. They scheduled me for a meeting with a physical therapist to assess my condition and perhaps schedule a treatment to get me back on my feet. In the last 5 months, I learnt how to mitigate my side effects more or less effectively, but I am at loss when it comes to what will come next. When will be the day when I say – I became “normal self” 6 months after my chemo was over, 18 months, 24 months? For now, my goal is to be “normal” the day I come back home.

A small accident happened on Monday night when my roommate stepped out and somebody came to the ward and stole their computer, electronic translator and a box for hearing aid. It was particularly bad because I was in the room too, but resting with my eyes closed, so I heard the brisk steps but didn’t pay attention. How little dignity it takes to steel from somebody at the oncology ward. May they burn in hell.

The same evening, Dimitris brought two cakes for the nurse stations in the South and Central to celebrate my last chemo. Nurses do their jobs as well as they can, but I wanted to let them know that I appreciate even the smallest, the most incremental gestures they made to make me feel better and I know that many of them went beyond their call of duty to do so. It was my small token of appreciation.

My last chemo pack was over at 3 am on Tuesday morning and after requesting an additional dosage of Aloxi, I was sent home by 9 am.

After my last chemo cycle, my discharged paper stated my diagnosis:

  1. Lymphoma
  2. Atrial thrombus
  3. Anticoagulation
  4. Peripheral neuropathy
  5. Encounter for antineoplastic chemotherapy
  6. Anemia
  7. Anal Fissure
  8. Pancytopenia

In September 2014 I checked in with one disease, in February 2015, I checked out with 8, but I am alive.

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I’ve learnt that the best way to cope with emerging side effects is to keep myself busy. Luckily, our Oxford classmate, Hideki and his family were visiting NYC from Tokyo so we invited them to come for tea. It is strange and awkward to tell your friends, once again, that you have cancer, but I guess eventually, they all will slowly find out.

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My night was sleepless and terribly nauseous but I am looking forward to recovery, this time – full recovery.

Wednesday – Tuesday, February 3-17, 2015

When you want something really bad and keep very quiet about it, but still don’t get it, this is when you become utterly disappointed. I thought, 5 chemo cycles taught me how to deal with the post-chemo side effects, but this time was different. They say, chemo has a cumulative effect, it goes into your body, then goes again and again but never completely leaves it. No matter how much water I drink (to wash chemo out), it stays in the body and makes me more and more sick. Now, when I completed 6 cycles, i feel like my entire self, including my soul, was soaked in chemo. Thus, I faced difficulties getting back to an “ok” state.

The side effects didn’t hit me until two days later. I can’t explained the delay and I frankly hoped it would skip me all together this time, but it hit me hard. The nausea, horrible bone pain, vertigo, fissures, weakness etc. Nurse came to check on me a few times. She is really lovely and knows a whole lot about holistic medicine alone with conventional one. She has advised me to take Epsom Salt baths for the bone pain and drink Gelatin supplement for stomach coating and it seems to be working. I was also pre-approved for 4 home visits from a physical therapist, Richard, and when he showed up to evaluate my state, he exhausted me just by making me get up the couch and sit back down, continuously 5 times. How come i lost all my stamina?! My heart was trying to get out of my chest, I was out of breath and the rest of the day I spent in bed. I know, my body needs time to heal and recover before I can start working out but when is the right time?

On Tuesday, February 10, I had my blood work and apparently, my WBC dropped to 0.0X, my hemoglobin was low, which explains vertigo and weakness, but so were my platelets, hence – no endurance since blood doesn’t carry enough oxygen. I was placed back on a 7 day antibiotic-course and advised to continue the neupogen shots.  Since I already said goodbyes to everyone at the hospital, the last thing I wanted to do was to end up there with neutropenia again. So, I stayed home and cooked; apparently, after my mom left, cooking became one of my favorite hobbies.

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On Thursday, February 12 I had a follow up blood work and an appointment with Dr. J.L.  My counts were back to normal or growing, my vitals looked fine, I was taken off Lyrica but continued to take other medications, and I was given my next appointment only in 6 weeks. Wow, I couldn’t believe I wouldn’t have to go back to the clinic for so long! It is a liberating yet scary feeling since I got so used to the chemo regiment and my cancer state, that I can’t imagine being away from doctors for so long. Though, it doesn’t mean i can eat anything I want, or use all the creams/supplements I used before the chemo. My doctor asked me to wait till PET scan results.

Valentine’s day was nice and snowy. Dimitris’ parents flew in from Athens and we spent a quiet evening catching up. It is so great to have them here, in NYC since I know how much they cared and worried about me. On Sunday night, February 15, we all watched the 40th anniversary of SNL. I wish I felt a bit better to take them places, but my recovery is dragging on and even though I feel better and better, those changes are so marginal, almost nonexistent. Every side effect either takes longer to recover or comes back in an exaggerated form, f.ex. I developed mouth sores this time that took a while to go away and one was as big as my cheek, making it impossible for me to eat or drink for a few days.

On Monday, January 16, I finally had energy to catch up with our wedding manager in Malta. Martina is a lovely and very upbeat and energetic person, I wouldn’t have wished for a better event planner. We spent 2.5 hours discussing the wedding details and for the first time since I started to plan my wedding, I felt pretty comfortable that we will make it right and grande, just the way I want it.

On Tuesday, February 17, I went to visit Raffaele Mollica and see how the work on my wig progressing. The wig looked just fabulous but it needed another week to be completed. I can’t wait to wear my own hair again.

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