The Treatment

My doctor is a slightly-disheveled busy-looking man, perhaps in his 40s, with round glasses and kind features. He speaks near perfect English and seems very competent. Both Aylee (my Dutch colleague who comes with me to this appointment) and I am relieved.

The treatment is standard R-CHOP chemotherapy, to be administered every 3 weeks for 8 cycles. Thus, 6 months in total. There are usually fewer chemo cycles involved, but my doctor thinks that for a tumor this size, 8 will be required.

After 6 months, I'll get a full CT scan and a bone marrow biopsy, to determine whether there's any cancer still present. If there is, then we'll discuss the possibility of radiation treatment.

The decision of when to receive the bone marrow biopsy resulted in a little mental tussle between me and the doctor. It's standard practice to have one at the start of treatment, but I didn't see the point. The doctor admitted that the results of the biopsy wouldn't change the treatment plan one bit; it would only change prognosis. In general, spread to the bone marrow with this sort of cancer is a rare occurrence. I didn't think it would benefit me much to find out that my prognosis was worse than expected; in fact, it would probably only serve to dampen my spirits. I argued instead to have the biopsy as a check at the end of treatment, and in the end, he agreed.

Because the cancer symptoms seem to be worsening so fast, and I am anxious to start treatment immediately, the doctor also agrees that I can start taking prednisolone along with alluprinol that very day. He schedules my first chemo treatment for Friday, which is the earliest I can get one. I have an appointment with the nurse to discuss the treatment on Thursday morning.

He also very rapidly fills two prescription pad sheets with an arsenal of the drugs that I am to take orally at home.

Prednisolone to kill tumor cells
Slow-release Oxycodon HCl Sandoz for the pain I was having at night
Fast-release OxyNorm, in case the Oxycodon wasn't enough
Kytrol to be taken against nausea and vomiting twice a day for the first 3 days in the chemo cycle
Metoclopramide HCl to be taken as needed for nausea anytime after Chemo Day 3
Magnesium Hydrochloride PCH, for the common side effect of constipation
Allopurinol Sandoz 300, to prevent kidney complications

Then, from the front desk, I get a thick binder listing pages and pages of potential side effects and what can be done to address them, all in Dutch, with a promise that all my other questions will be answered in due time during my Thursday interview with the nurse.

My Brother, the Oncologist

Am I lucky or unlucky?

Unlucky to have spun the wheel of life and landed on Cancer. Lucky that my lot goes hand in hand with my younger brother's chosen profession. Not only is he a doctor, but he's a specialist in oncology.

He was the first person besides my manager and direct reports I told about my diagnosis. And he was instantly 100% there for me.

I don't know why I was surprised. I suppose I was used to seeing my brother the way I remembered him when we were kids. Building forts out of the sofa cushions, watching Kung Fu Theater on Saturday afternoons, playing ping pong in the basement, shoveling the driveway. We are 6 years apart in age, so I never went to high school with him. I hardly saw him in the college and graduate school years, when I was living in Boston and Ann Arbor. In fact, even when I moved to the Bay Area, and he was living in San Francisco, our paths didn't cross too often, except during holidays when my parents came out to visit. I saw my other brother Eric much more frequently in the same period. Not only were Eric and I closer in age, but since I introduced his best friend to his now-wife, I was often invited to their group's social functions.

After almost a year of little communication, I emailed him about my diagnosis. I saw his response the next morning. Among other things, he wrote: "Well this is pretty shocking for me even though I deal with lymphoma on a daily basis...Personally, I would think it would be better for you to receive treatment closer to family. Whether that would involve some of us going over there or you coming here I'm sure we could all work out...Call me at ANY time". And he signed the letter with "Love". I was struck by that, for some reason, because I have always thought of Ed as the reserved one of us. I was also suddenly hit by the fact that Ed is an adult now (when did this happen?!), and is responsible for the care of a lot of other patients, like me. It's a bigger responsibility than I could ever imagine having in my life, and I am very proud of him.

The Onion is the Best Medicine

In the March 24 issue of the Onion online:

I Was Going to Succumb To Cancer, But Then I Got This Mylar Balloon

American Cancer Society Description of Primary Mediastinal B-Cell Lymphoma

This type accounts for about 2% of all lymphomas. The cells are large and resemble those of diffuse large B-cell lymphomas.

This lymphoma starts in the mediastinum (the area around the heart and behind the chest bone). It usually is localized at the beginning and rarely involves the bone marrow. It can cause trouble breathing because it often presses on the windpipe (trachea) leading into the lungs. It can also block the superior vena cava (the large vein that returns blood to the heart from the arms and head). This can cause the arms and face to swell.

About 2 out of 3 people with this lymphoma are women. Most are young -- in their 30s. It is a fast growing lymphoma but it is treatable. About half of patients can be cured.

Diagnosis

It's cancer after all.

The doctor gives me a written description of the biopsy in Dutch. At the bottom, it says that the WHO classification is Mediastinal Large B-Cell Lymphoma. He also, upon request, gives me a copy of the blood test results, which show that I have elevated levels of eosinophils, basophils, and serum LDH.

But now he's done with me. He's referring me now to the oncology/hematology specialist clinic, which is the desk next door. My appointment is for April 7. April 7? That seems such a long way away. I am impatient to get started with treatment. I tell him that my symptoms are worse now; I can sense that the tumor is growing fast. I can barely sleep through the night. He tells me to take painkillers and that he will ask if an earlier appointment is available.

He does ask, and low and behold, there is an appointment at 9am on Monday morning.

Second Appointment with the Lung Specialist

The lung doctor has my CT scan results on the screen. He points out how the solid mass fills the entire cavity of the mediastinal area. He also thinks now that the mass is not growing out of the lung, but out of the lymph node. "Maybe Hodgkin's" he mumbles. He points out the part that is pushing out from my chest, which is barely visible on the CT Scan. All I can think of is, "that's just the tip of the iceberg". A very big iceberg.

For the first time, I am realizing the gravity of the situation. It could be cancer, and the tumor will have to be shrunk via chemo. But even if it's not cancer -- even if it's a cyst or a benign tumor, I'd have to have major surgery to get rid of it.

The doctor wants me to get a biopsy. If I can't come back today, then he can schedule one for Monday. I decide that it's best to get the biopsy done as soon as possible and arrange to come back at noon.

CT Scan

I wasn't allowed to eat the morning of the CT scan, though I could have a cup of coffee. In the waiting room, I ran into another expat friend (not the same one I met at my doctor's) and we chatted for a bit. She had an ankle problem not too long ago, so I figured she was there to get that checked. Again I didn't explain why I was there.

I always thought that the CT Scan involved lying on a bed and being rolled into a chamber that completely enclosed your entire body. Maybe I was confusing CT scan with MRI. Anyway, instead, when I lay down, they injected me with something (in my right arm, since I already used my left arm for blood tests the previous day) and told me that I might feel a warming sensation soon around my head and chest area. Then they made me put my arms above my head and told me not to move a muscle. I was not rolled into a chamber. Instead, a narrow plastic-looking apparatus was rolled over me. It seemed that the scan would only be of my chest area, above the swelling.

It was more uncomfortable than I expected. I almost thought about crying out, because it felt like all of my blood from my head down to my toes was replaced with very warm water. Was that normal? But before I could say anything, the radiologist was back with a cheery "Finished!".

I put my warm clothes back on and went to the office.

First Appointment with the Lung Specialist

The earliest appointment I was able to get was for Tuesday March 17. In between, I went to Pasta & Basta, where the waitresses sing (well, but annoyingly) every 5 minutes while you are eating. I also had a visit from my friend in Nijmegen. We went to the Burger Bar and then to OT301 for a 50s/60s horror movie/sci-fi schlock surf rock concert put on by Messer Chups. On Sunday, there was the monthly storytelling show in Dutch called 'Echt Gebeurd' at the Toomler, which features writers, artists, comedians, and other public figures telling true stories without notes.

I was also too busy at work to think much about the lump. It didn't seem to be growing and I still had no symptoms. I showed it to a few people at work, mostly because I felt I should explain why I was going to be out of the office yet again for a medical consultation. It was March 17 before I knew it.

The appointment was brief. My doctor was an older man, who could speak English, but seemed far more comfortable speaking in Dutch. He showed me the x-rays and then ordered a CT scan and some blood tests. I went to get the blood tests immediately after the appointment, in what seemed like a fairly efficient process. My CT scan was scheduled already for the following day. The doctor didn't seem particularly rushed to get it, but I wanted it done with as soon as possible. While I couldn't detect whether the lump was growing, I was starting to feel twinges in the lump once in a while and a burning/itching sensation there in the evenings, that made it sometimes difficult to sleep right away. I told him this, but didn't press the point, maybe because I didn't want to believe myself that things were getting worse so fast.

Phone call

On the following Monday after getting my x-rays done, I received a phone call stating that the results were in and that it was still difficult to identify what the problem could be. The x-rays did show that the swelling was growing out of the mediastinum of the lung. So I could come by the next morning to pick up a referral to see a lung specialist at the OLVG (Onze Lieve Vrouwe Gasthuis, or "Our Dear Lady Guesthouse", the local hospital).

Second Contact

My doctor's office was just a 8-minute walk along the canal from my flat. In the waiting room, I ran into another expat I knew. I didn't tell her why I was there. She assured me that she had been going to this doctor's office for years, and they were very good.

My exam took all of 5 minutes. The doctor said she couldn't tell me much without x-rays so she sent me directly afterwards to the radiology clinic a few streets away. I got the x-rays done and then went to work.

First Contact with the Dutch Health Care System

On the afternoon of March 2, I paid a visit to our Human Resources representative on the second floor. Luckily, she was in. She only works a few days a week at our site, and I hadn't memorized which days. I showed her my lump and explained that I had no regular physician, seeing as I had not had any serious illnesses in the 2 years since I moved to Amsterdam and never got around to translating all the insurance literature I had been receiving in Dutch.

She was concerned. She called a few doctors for me, but the earliest available appointments were for Friday and it was only Monday. She suggested then that she drive me to the emergency room at the AMC, the academic medical center which happened to be just a few blocks from the office anyway.

The AMC struck me as a bit disorganized (and in fact, I was later to have this impression during many interactions with the Dutch health care system). The uniformed security officer waved me in to another room, where a nurse was supposed to do intakes. The nurse explained that there were 2 others ahead of me, so please take a seat in the waiting room. But she didn't take my name or give me a number, or even ask what my problem was, so I wasn't sure whether she was going to remember me or in what order I arrived. And 'triage' didn't seem to be in effect. The couple that came in after me, with a kid whose hand was bandaged up, received the same handling. They were Dutch, but just as confused as me, because they tried to go back to ask if they shouldn't at least provide a name, but the nurse waved them into the waiting room again.

More and more people trickled in. About 30 minutes later, the security guard came in and pointed at me. "You're next". And then he pointed at two other people in the waiting room in turn. "And then you, and then you." So, they were paying attention after all.

But the 30 minute wait was just to get my intake interview. I explained in Dutch that my Dutch wasn't that great so perhaps it would be easier if I continued in English. "Easier for you maybe, but not easier for me", the woman replied back in Dutch. Oh okay. It wasn't so much that I didn't want to use my Dutch, but over the years in Amsterdam, I had been conditioned to think that most people preferred to speak English with native English speakers whenever they could.

We muddled through and I felt a brief sense of accomplishment afterwards. If nothing else good came out of this, at least I could see that I was making some progress with the language.

An hour later, I was sitting on the hospital gurney showing the first of three medical professionals in succession my lump. It seemed to me, though I can't be sure, that the three all had different types of clothing, indicating perhaps that the first was an intern and the second a resident, and the third a bonafide doctor. They asked questions and prodded around the area of the lump. The second professional told me that he didn't think it was coming from the breast area, and so it probably wasn't breast cancer. None of them would say anything more specific than that about the lump itself. The third professional told me that this did not qualify as an emergency and that I should make an appointment with a regular physician. Oh, I didn't have one? He asked where I lived and luckily, he knew of a good one whose office was just down the street from me.

When I got back to my own office, just one stop away on the Metro, I called and was able to squeeze in an appointment for Wednesday afternoon, which was a lucky break because I was leaving for a business trip to Milan on Thursday.

March 1

It all started March 1. I had a friend visiting from Boston, and her friend from Nijmegen came to Amsterdam for a night out. We had dinner at a Surinamese restaurant in the Pijp and then took the ferry over to the NSDM-Werf to Ms. Stubnitz, a real whaling vessel that houses a 3-floor dance club for half the year. We stayed up 'til 3pm, squeezed 6 into a tiny car to get back to my flat. When I woke up the next morning, I noticed IT.

A lump. A bump. A swelling. Actually, it seemed huge. Impossible that I wouldn't have noticed it the night before. I had been wearing a low-cut bodice shirt, one of my favorites. I could almost cup my hand around it. It poked through my chest, slightly to the left of my sternum above my left breast, forming an irregular triangle with my other breasts. Being admittedly somewhat flat-chested, it was like I suddenly had a third boob.

It wasn't painful, and I had no symptoms of any illness. It was just a curiosity. "How strange", I thought. I considered telling my friends, asleep in the living room, but then decided against it. We were having so much fun. If it was still there on Monday, I'd go see a doctor.