Coming Home

This morning, Dr. B came in to exam Steph after her first round of chemo. Her spleen and lymph nodes are no longer swollen and her white blood cell count has dropped to 100,000. Not quite normal, but a lot better than 400,000! He said that she’s responding remarkably well to the FCR treatment, better than expected.

Her platelet count is a little low, possibly due to the FCR, so he ordered a transfusion, which took about 20 minutes, before discharging her from the hospital. She’s going to receive outpatient care from him and has an appointment for a followup a week from today.

Her nurse removed the PICC line (which we were afraid she’d have to keep) and stuck a band-aid on it. She arrived home at 2:30pm this afternoon and is currently lounging on the couch watching television, surrounded by our little dogs, playing Candy Crush Saga on her iPhone.

She isn’t cured, but she’s recovering exceedingly well. Though we’re still holding our breaths, we are very optimistic that she’s going to make a full recovery and will eventually wind up cancer-free. Here’s hoping!

Thanks for reading and, if you’re interested, continue to stay posted for the continuation of Steph’s CLL journey.

FCR Chemotherapy Treatment

At this point, she had had two blood transfusions in order to increase her red blood cell count. It had increased from 3.8 to over 9.0. We weren’t out of the woods, however. Steph still was in the advanced stages of CLL and her WBC, or lymphocytes, were still hovering around 360,000 - 380,000.

I’m not going to get into the details regarding Fludarabine, Cytoxan, and Rituxan...so much information about their M.O. is available online and I don’t want to get too wordy or redundant. I’m sure that if you’re here, you probably know a thing or two about them already.

Steph had been through the shocking diagnosis as well as an intense bone marrow biopsy. This was yet another trial, and, we feared, the most daunting one. The color had come back to her cheeks and appetite had never decreased in voracity and she still had that great attitude. We were worried that those things would change. We had heard horrible things about chemo. She would lose her energy, her appetite...she would feel nauseous and would lose her hair. Out of the three of us sisters, everyone would agree (and I’m not saying this because we extra-love her due to her illness), that she is the most lovely, vibrant, and full of life. The thought of those traits deteriorating killed us.

They would administer the FCR through a PICC line, or Central IV, that was installed in her the day after being admitted. This would make blood draws and intravenous administrations more convenient and painless, as opposed to being stuck in the arm time and again. (I thought the PICC line installation process would be painful and scary, but she said that they gave her a local and she didn’t feel a thing after that.)

With heavy hearts, we stood by her as they administered her first round of chemo. To prepare, the nurse gave her a bunch of pills, consisting of antibiotics and other preventatives to protect her from the toxic side effects of the chemotherapy drugs. Next, she was given a steroid-based anti-nausea medication (whose name I can’t remember) intravenously.

They began with Fludarabine, which would take an hour, and nurses came in frequently to monitor her vitals. Next was Cytoxan, the one with the most fearsome side effects, also administered over the course of an hour. Last was Rituxan, administered over the course of a whopping 4 hours, with even more frequent supervision than the first two.

Her nurse provided her with graham crackers and milk to help ease her stomach in case of nausea. The nausea never came. The only event that occurred was that Steph discovered her love for graham crackers dipped in milk and totally went to town on those suckers. When Dr. B came to visit the next morning, he was flabbergasted by the fact that she didn’t experience any of the common side effects. Also, her lymph nodes and spleen had reduced in size considerably overnight. “How strange!” he blurted out in awe.

The next two days were as uneventful as the first. FCR went down without a hitch and Steph felt absolutely fine. She didn’t experience any fatigue, nausea, or pain. (It’s only been a few days, she may or may not lose her hair over the next few months, we’ll see.) She never asked for any additional meds over the duration of her hospital stay, she was as comfortable as can be, outside of being bored and annoyed about her week-long hospital stay.

Biopsy and PET Scan Results

By Tuesday, October 7th, we had the results in from the biopsy and PET scan. Her oncologist (let’s call him Dr. B.) confirmed Stage 4 CLL and said that her scan showed signs of a swollen spleen and lymph nodes, symptoms that were typical for her case. Normally we probably would have been heartbroken. The prognosis for stage 4 in some articles that we found was about 1-3 years, 5 if you’re lucky. She just turned 30 in August. It seemed so unfair. However, Dr. B explained that, due to the atypical nature of the case (with her being so young and in oddly excellent condition for the circumstance), he was very confident that she would respond well to treatment and could possibly live out the rest of her life normally...50-60 years, “however long you plan to”, was what he said.

He prescribed a Fludarabine, Cytoxan, and Rituxan chemotherapy regimen, to be administered over 3 days...which would count as one round. She’ll be expected to go through this regimen once a month, for 4-6 months (4-6 rounds), depending on how well she responds to treatment. The hope is that she will go into remission after this first line of chemotherapy.

Bone Marrow Aspiration and Biopsy

My father sent her blood sample to the lab on the morning of October 2nd. He received the results the next morning sometime before 9am. By 10:30am, our family was in the ER and, a few hours after that, she was transported to the hospital’s ICU. Her oncologist immediately ordered a bone marrow aspiration and biopsy. We were already anxious due to the possible diagnosis, but were additionally apprehensive because we knew that this was a stressful, invasive, and possibly painful procedure. 

My youngest sister, Chris, found that this procedure is usually done with a local anesthetic, but there was also an option for sedation. We were hopeful, but found that we weren’t allowed the luxury of time for anything outside of a local. They gave her a dose of Ativan, for stress relief, but didn’t even give it time to kick in as they had her on her stomach 5 minutes after administering it. Chris escorted our mother out of the room, she couldn’t stand to watch. My father opted to stay and Steph wanted her big sis there to hold her hand. That was fine. I wanted to be there to be strong for her. I’ve always protected her from the time we were little and that wasn’t about to change. His assistant asked if I wanted to have a seat, that the procedure was a little intense for some people. I told her I would be fine.

The oncologist gave her two injections to numb the area of her hip they were working on. She winced slightly from the stick, but the numbness set in quickly. Next, he quickly made an incision with a scalpel to ease the insertion of the thick, hollow needle used to extract bone marrow samples. She said that she felt a bit of pressure, but no pain.

Next, he inserted the needle to extract some fluid. She was fine, didn’t feel a thing. After that, with what seemed like quite a bit of force, he proceeded to extract a bone marrow sample. She squeezed my hand and winced a little more. Later, she would tell me that it felt a little uncomfortable and slightly achey when he did that, but not as bad as she imagined at all. I asked her to describe an equivalent pain so that I would have something to compare it to. She said that it wasn’t as bad as stubbing your toe. Haha. 

Unfortunately, it was what he had called a “dry tap” and he was unable to get as much sample as he wanted on the first draw and had to do the whole thing over again. Steph was pretty ok, though. He was very surprised at how well she handled the procedure. At one point, he had expected her to feel some pain and asked how she was doing. “Fine.”, she replied nonchalantly. I was impressed.

We expected her to feel some pain after the anesthesia wore off and to have some bruising. Nada. She didn’t even need a band-aid. She never asked for any pain medication.

The Very Bad News

Hi, my name is Cat.

October 3rd, 2013 was my birthday and one of the worst days of my life. On this Thursday, I found out that my younger sister, Steph, was diagnosed with cancer. A few days later, we would discover that she, at the young age of 30, was afflicted with Stage 4 Chronic Lymphocytic Leukemia, a type of leukemia that is more common among men in their late 50’s or older. Reported cases of CLL are rare for her age group and gender, affecting less than some 1%.

Steph had been feeling more fatigued than usual and, while on campus two days prior to her cancer diagnosis, (she’s studying business at a local state university) she felt faint. At home, she suffered a severe nosebleed that seemed to come out of nowhere. When she called me and told me about her strange symptoms, I immediately became alarmed. I was hoping that maybe she was anemic, but, deep down, I feared the worst and couldn’t even bring myself to think it. I called our father, a family practitioner, and asked him to bring home a kit for a blood draw. I wanted a sample sent to the lab as soon as possible for analysis. The panic in his voice, when I described her symptoms, was palpable. He later told me that he couldn’t concentrate for rest of his work day because his mind set was as anxious, if not more, than my own.

The results were devastating. Her hemoglobin count was below 4.0, her white blood cell count was nearly 400,000...numbers that sent the ER, her oncologist, and hematology/oncology department at the hospital into a panic. For reference, a healthy young woman her age would have a hemoglobin count of somewhere between 12.0-14.0 and a white blood cell count of about 10,000.They had never seen such catastrophic numbers in a patient before. And, yet, there she was...sentient, walking, talking, laughing, and had a great attitude. The staff joked that she wins first prize for highest recorded WBC count at the hospital. Her oncologist admitted that he had expected to see someone knocking on death’s door but was amazed to see her in such a reasonably healthy state for someone in her condition.

We suspect that her cancer has been progressing at an extremely slow rate, possibly over several years, allowing her body to adjust until the numbers grew too severe.