Photo: Hay-on-Wye, Powys, Wales, August 2003

"A disease is an abnormal condition affecting the body of an organism. … In humans, disease is often used more broadly to refer to any condition that causes pain, dysfunction, distress, social problems, and/or death to the person afflicted."(© Wikipedia, retrieved Dec 2011)

When Marcus was diagnosed with testicular cancer back in 2001, he found quite some relief in trying to understand the symptoms of the disease himself, reading a lot and writing a bit. Here is the part of the diary as far as he remembers or actually wrote it down:

Marcus' Cancer Diary:

Feb 5, 2001

Shock and Despair As Testicular Cancer is Diagnosed [total: day 1]

"My visit to A.'s department of urology. I have a strong feeling of discomfort about the fact that my right testicle is heavily swollen. It doesn't hurt, but it's notably increased in size.
I get to know B.: an urologist in his end-30s. I feel apathy and empathy towards him at the same time as he does his first enquiries. A quite impersonal and mechanical approach of his first examinations is followed by careful and honest statements. The examinations consisted of an ultrasound scan of the testicles after a visual and sensual check. The results must have been quite clear as B. is heading for his colleague. When she is entering the room I learn rule #1: There will be very few moments of privacy during the next days. S. also examines my testicles and both confirm their concerns. It might be a tumor, immediate surgery is mandatory.

The ball starts rolling. The unforseen job is scheduled to take place in about two hours - at 15:15. I get a few minutes for phone calls and am later taken to my sick bay on the second floor, a room with two beds. In an absolutely chaotic way I get to know a lot of people: nurses, doctors, the anaesthetist, the surgeon, working students. I have to fill out a lot of forms, my rights and the risks of the surgery are explained to me.

According to rule #1 an unknown young student asks me to drop my clothes so he can shave me from breast to knees. This is done inside my room, but no precautions in terms of privacy are taken.
Thank god my wife Andrea is now joining me. I am praying that noone enters the room as he is shaving for 15 minutes: breast, stomach, penis, scrotum, legs. I start getting the feeling of a nightmare. After he leaves, a nurse helps me into the surgical shirt and leaves Andrea and me alone. We have another 15 minutes for us before I am brought to the operating room. We are silently crying for hope but calm down eventually.

The surgery is done in rooms Dr Hannibal Lecter could have invented: cold, white, a barren atmosphere. A lot of machines (as obviously typical for operating rooms in these types of mass society hospitals), no music, no personal atmosphere at all. The surgery is done by V.: a very capable person in terms of technical craftsmanship. But to me it feels like he is lacking another aspect of a true doctor: no smile, no explanation, no time for building up a relationship, one could almost get the impression of the reincarnation of an ideal worker from the times of the machine organization. (Although I will later learn that V. is the person at the department who is absolutely the best and nicest when it comes to talking and dealing with children.)

I am freezing as a lot of cables are attached to my body. It takes about 5 minutes of horror until the anaesthetist starts his job. I get unconscious quite quickly...

When I wake up I am back in my room again. I am feeling dizzy. It takes some time until I realize that I have just got one testicle left. It is like the self-fulfilling prophecy: cancer!

The day fades out in pain of the body and the soul..."

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Feb 7, 2001

The Operation is Over [total: day 3]

"It has been a hard and cruel time since Monday. I have not yet learned to cope with the pain from the surgery. The scar of the operation hurts. It is still that I need medicine to be able to stand it. A nurse tells me that some patients are able to walk again two days after the operation.
Well, unfortunately not me. Though I can walk. But very slowly and just two or three steps at a time. And not without leaning on someone.

Yesterday I got to know A. personally. He is in his mid-fifties and very friendly. He has got a calming disposition. I reckon that he is very experienced. When he and his team are in for the round, it is just him who decides. All others just literally report and answer his questions.

I learned yesterday that I will have a CT scan today. This is to check whether and, if so, where I have metastases of the testicular tumor. The scan will not be done in our building as there are just very few machines available in the whole hospital complex and none in ours.

Andrea arrived early this morning to join me on the CT scan. I am glad that there is another shoulder I can use when it comes to the worst.

The secretary of our ward enters the room and tells me that the walker's transport would arrive soon. I should get dressed and walk down to the ground floor where a car would then wait.
I must have looked quite surprised because she suddenly asks whether I was at all able to walk. I deny and ask her to arrange a wheel chair or similar type of transport. My scar still hurts too much to walk by myself.

About ten minutes later a young working student enters the room pushing a wheel chair. He will drive me to the building where the CT will be done. Andrea joins us. Though it is a sunny day I feel quite chilly when we leave the department of urology and get outside. It takes about 10 minutes until we arrive at the building. It is quite run down. The CT department is in the cellar and we have trouble finding an escalator to get down. It turns out that the CT department is being refurbished. A few working men and a lot of noise from their hammers and demolition machines while we wait.

Although we have an appointment and are on time we have to wait for a long time. There are two patients still to be treated before me.
I get a big beaker with an awfully tasting liquid being the contrast medium. I have to drink another one of it until the examination can start.

After about 90 minutes waiting - another emergency patient has to be scanned as well - I am asked to come into the room with the big tube. Or at least I thought it was a big tube. It turns out to be just a small slide of a tube. So it won't be that difficult. Maybe I have mixed it up with a machine for magnetic resonances.

The assistants and doctors are very nice. They explain everything in detail. I get a temporary catheter laid into the forearm that will be used to inject a special radioactive substance into the veins and the blood stream. This substance tends to accumulate where testicular tumor mass is located in the body. The CT scan itself is just a very sophisticated photo shooting. I have to lay still on a type of horizonal stretcher and the slide of the tube moves over my body and scans it. The whole procedure takes about fifteen to twenty minutes. It doesn't hurt. It's just a funny taste and feeling when the substance is being infused: I taste some metal flavour for a few seconds. And it really gets warm in your veins. I feel the warmth from the arm going down my body into the scrotum. Groovy!

We have to wait outside until the pictures are ready. They aren't developed like in a photo laboratory but they are calculated. It's all digital these days. Billions of bits were generated and have now to be processed to pictures.

After another fifteen minutes the doctor who laid the catheter joins us. Bad news: There are metastases in the abdomen for sure. At least two of about 2-5 cm in diameter. Additionally there is something under the base of the left lung that is suspicious to be cancer. He carefully explains that it's not the worst and not the best outcome of the CT. He will write a report about the findings and send it to the A. as soon as possible. We can go back to the other building.

We don't call the young student. Instead Andrea pushes the wheel chair herself this time.

Metastases! I had feared that I got some and hoped to have none. What does it mean to have them in the lungs?"

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Feb 8, 2001

Testicular Cancer Staging [total: day 4]

"The result of the histological expertise showed that the testicular tumor was semi-aggressive: a malign teratom in IGCCG's stage IIb.

A. recommends to go for two courses of chemotherapy, each lasting for four weeks, each consisting of a one week hospital stay. Before his final proposal he wants to consult his colleagues from radiology once more."

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Feb 9, 2001

Another Day [total: day 5]

"The day went on like the whole week has been: The service quality of the staff was moderate. When B. checked and renewed the dressing, he tore the old one off and left the room promising to call a nurse; unfortunately he forgot to do so."

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Feb 22, 2001

The Question of Fathering Children [total: day 18]

"The sore throat is getting better slowly, so is the cold. I am quite sure that it is also due to my being at home and no longer in the hospital.

Today I am going to address an issue which has now become relevant again. The question about getting infertile as a side effect of the chemotherapy - or better: the question whether or not to freeze some of my sperm for a certain period of time just to be sure. As the chemotherapy will obviously not commence before the weekend, probably even later, I would have a chance to see a gynaecologist or a cryotechnical expert.

A lot of people have expressed their thoughts about this topic. They have thought about various aspects: Some call it an ethical question, some call it a religious, some even just a biological one. To me it is is down to whether or not I want my potential children to be fathered by another person and not by my wife and me. It is about the act of bringing my wife's egg together with my sperm by an expert with technical instruments on a table. It is about my feeling that the creation of new life is a sacred thing and my strong doubts whether I would want to have it done in such an unnatural way.
My wife and I have briefly discussed the issue a few times since I first got the cancer diagnosis. I have always argued that I have a bad feeling about it and thus disagree with sperm being frozen.

Nevertheless I start surfing the Internet and looking for general information about the procedure. I learn that there are two places in Düsseldorf where I could find doctors who are members of a national reproduction group whose technology and quality system look promising. I phone my health insurance companies and quickly learn that caring for unborn and unfathered future life is not part of what they pay for. I also phone the first of the two medical practises, but cannot get through. It seems as if they are closed today. The second practise is open and I speak to T., a young assistant who tells me that no doctor will be available until the end of this week due to the carneval period in Düsseldorf. I explain my problem and she quickly agrees that I should try to be there tomorrow morning. She will see what she can do then."

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Feb 23, 2001

To Sperm or Not to Sperm [total: day 19]

"When the alarm clock goes off I am not sure whether I really want to get up. I had problems falling into sleep last night and am still wondering whether it is a good decision to even be able to father children in a surrounding that was obviously not intended to by nature.

It is the first time that I leave the flat after coming back from the hospital the day before yesterday. My groin still hurts and walking, especially climbing stairs is quite difficult and strenuous. As the doctors endorsed getting back to normal, I drive carefully by myself to the medical practise. I like the short trip as it is quite sunny and driving a car seems like normal business again.
As T. advised yesterday, I try to arrive at 09:00 sharp. The medical practise is located in central Düsseldorf on the first floor of an office building. The building is being renovated and the entrance door to the medical practise is in the middle of the building site. As the doctors are off today it will be just the assistants working.
T. opens the door and introduces herself. I take an immediate liking towards her, a fine young lady as I will learn lateron. She explains the formalities and I fill out the respective forms for the medical practise itself and the cryobank. The premises look very run-down and I see why there is renovation going on. I am taken to a room at the end of the central corridor. It is a typical examination room of a gynaecologist: an examination chair, lots of instruments and test tubes, a lot of metal, tons of medicine, blind windows. She wishes me luck as she is leaving the room.
Here we go: another nightmare becoming reality. Do I want that?

I don't.

Due to the temporary consequences of the surgery I soon learn that I am neither physically nor psychologically able nor willing to have it done. It hurts too much, also in the soul. So I thank T. very much and leave again.

On my way back home I feel relief: Maybe there was a hidden meaning that the wound and the whole surrounding area still hurt; maybe it was my self expressing that such a fathering would not be right in my opinion... - But what about my wife?"

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Feb 27, 2001

Preparing For Chemotherapy [total: day 23/ chemo-cycle 1: day 0]

"I slept quite well; went to bed early yesterday and fell asleep almost in minutes; woke up even before the alarm clock went off. It is the day when I should go back to the hospital again. Funny enough I remember a dream I had last night:

"I undergo an operation. The doctors want to check whether my testicles were cancerous. I have no fears and am only curious. When I wake up from the operation I am laying in a hospital bed in a totally white room. ...
A female doctor approaches the bed holding a tray. I realize that I am not yet in my sick bay but still in the operating room and the doctors have not yet finished the surgery; although I do not feel any pain. She is presenting the tray to me and I see two piles of bloody human mass. When she is coming nearer I suppose that I look at my testicles. She confirms my guess and I wake up."

As I had hoped my constitution has improved over the last days and I decide to go to hospital as planned. My father drives me to the well known building. The nurses and assistants look quite surprised as they see me. We learn that A.'s secretary had not told the ward on the second floor that I would return today.

I check in again on the ground floor. The forms are now familiar to me. After returning to my sick bay - it is again room #24 at the end of the corridor - A., the doctor who pulled out the stitches comes to lay a cathether. I ask him to do it into my left forearm as the infusion tube hinders moving the arm and the hand and I am a right-hander. It is just for one day because I will get the central venous catheter into the carotid artery tomorrow. He is very attentive and careful. Over the course of the day and the night I get six infusions, one liter each, to get the kidneys going at full capacity.

It is V.'s turn for the round today. He comes in the late afternoon, asks me again to push up my shirt and checks the operation scar. He also explains the steps for tomorrow very carefully. My impression that the quality of the people of this ward strongly depend on their form of the day is confirmed. It was a very personable visit and I feel quite safe for tomorrow.

I had not thought that another doctor popped in but A. comes back in the evening. He brings a portable ultrasound scanner with him. I suppose he wants to double-check my kidneys as one of the possible side effects of the chemotherapy is injury to the same. When he scans my right kidney he explains that he found a cyst.

A cyst? The later the day the more interesting the news... I am quite sure that the cyst must be new as I ask all my doctors to always very carefully check my kidneys and noone has ever seen the abnormality. Whatever that will mean..."

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March 20, 2001

The Second Chemo Course [total: day 44/ chemo-cycle 1: day 21/ cycle 2: day 0]

"So it is checking into the hospital again today. It feels like routine. I am neither nervous nor reluctant because I think that I know what will happen during the next days: watering the kidneys, getting the central line, getting five days of cytotoxica, feeling worse each day.
Andrea is driving me to the department of urology. I check in while she brings the suitcase to my sick bay. It is again the ward on the third floor.

Much to my surpirse it is the same room as my first stay here after the operation. The room has a large balcony and oversees a small park which is enclosed by hospital buildings. It is a nice room for a hospital.

Although the secretary promised to inform the ward yesterday the nurses were not sure whether I would come today. I have to wait until a doctor is available to take a blood sample.

When I am later asked to go down to the private outpatient's department on ground floor it is H.'s turn this time. I feel even better when I see him. That is a good sign as he is one of my favourite doctors around here.

He lays an arm cathether, takes the blood sample and asks me to return to the ward to wait for the infusions to get the kidneys running at full capacity for the cytotoxica tomorrow."

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April 3, 2001

Sore Mouth [total: day 58/ chemo-cycle 2: day 14]

"The condition of my mouth has become worse since the weekend. It hurts and I fear that I caught a sore throat or something similar because swallowing is very difficult. Andrea and I decide that a visit to an ear, nose and throat doctor would be best.Thus Andrea drives me to the hospital. As I do not have an appointment we have to queue in line. We learn that the private outpatients' department is closed on Tuesdays. So we wait at the normal one where the line is even longer.

A young assistant does her routine questioning and checking. She examines very carefully. Later the doctor confirms that it's not a sore throat, but just the normal side effects of chemotherapy. Also the bleedings in the nose are nothing to worry about.
We get a sample of an ointment for the nose and a prescription for some anaestetical pills for the throat.

The pills turn out to be very strong. It's like preparing a small local operation. At least it allows me to eat and drink a bit. Although the pills taste like medical pills. And that's usually not a nice appetizer."

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April 4, 2001

A Real Team [total: day 59/ chemo-cycle 2: day 15]

"I learn that my family doctor got in touch with A. yesterday. I hadn't asked her to do so. I have a good feeling. It's great that the people at the hospital and my family doctor are becoming a real team.

I am quite tired today. The visit to the hospital yesterday was more exhausting than I had expected. I sleep a lot during the day.

My mouth has become worse. Even with the pills it's hard to eat. I have almost no appetite. Just drinking a lot. Somehow.

B. calls in the evening. He tells us on the phone that he has spoken to A. and my family doctor. As my blood numbers were quite low on the weekend and haven't much improved since then, they would favour a stay in the hospital. I should check in tomorrow. They could then monitor the white blood cells and make sure that I wouldn't catch some new disease.

That means isolation. A room for my own. No visitors without mouth covers and special clothing. Even the nurses will wear them. Damn."

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April 5, 2001

Being Isolated [total: day 60/ chemo-cycle 2: day 16]

"My father drives me to the hospital as Andrea works early today. We arrive at the department of urology. Check in like always. Normal business. When I arrive at the ward on the second floor I learn that there is no room and no bed left for me.

We have to leave again and move to another building with a satellite part of the department of urology. It's a two minutes drive from the central building.

The building itself is older. It looks a little bit run down, not as newly refurbished as the other one. Still the nurses are very friendly. They are all completely unknown to me. It's like another hospital.

Maybe that is the reason why I feel comfortable from the very first minute. A nurse takes about ten minutes to explain everything to me. What isolation means, why I have to be isolated and so on.

The room itself is on the first floor and has a very big window facing the back of another building. There is a small garden with a big tree in between. I see two magpies in the branches.

The round comes in the afternoon. The doctors explain that I will get Neupogen today. It's a medicine that boosts the power of one's blood cells. It's given to stimulate the recreation of white blood cells for people with a very low count like me. It turns out to be just a small injection, given subcutaneously.

Today is day sixteen of the second chemo-cycle. The scheme indicates the giving of Bleomycin for today. But the doctors are worried about the low number of blood cells. They suggest to wait another day with the infusion.

I have still big trouble eating things. One nurse proposes later that day to see the dietician. She will take care of an appointment for tomorrow."

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April 6, 2001

Even More Chemo [total: day 61/ chemo-cycle 2: day 17]

"I have slept quite well. I feel safe at this department: A lot of nice and helpful nurses and assistants.

In the morning I get another injection of Neupogen. The morning round also decides to give the Bleomycin today which I soon get.
Thank God there are no signs of nausea during the day. It's just Bleomycin, not Cisplatin.

As promised the dietician arrives in the early afternoon. A young lady who is used to people with side effects of chemotherapy. She explains that I could eat a la carte and presents a paper with around twenty different meal proposals. I quickly learn that staying in a hospital can also mean caring for you. I tell her about my problems to swallow and she proposes some light meals that can easily be swallowed. We make a plan for the next five breakfasts, lunches and dinners. That's good news.

Somewhen in the evening I must have made a wrong move. My back hurts like hell. I have caught a lumbago. Great. Really great. Now I can hardly move at all.

I ask for pain-killers and get some. After the second one I am able to find some sleep."

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April 7, 2001

Losing Hair [total: day 62/ chemo-cycle 2: day 18]

"Although I have hardly left any hair on my head, the loss of the very sparse and short ones has become even worse. The white sheet on my bed is slowly becoming speckled.

The pain in the back is still there. During the day I will ask for pain-killers five times. Moving is very difficult without them.

My blood numbers are still very low. It's just wait and see today."

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April 9, 2001

Feeling Better [total: day 64/ chemo-cycle 2: day 20]

"It's getting better every day. The pain in the back went away during the weekend. My mouth condition has improved and allows me to eat again. And due to the Neupogen my blood numbers have increased dramatically.

Thus it's time to go home today.

Home, how wonderful! I am looking forward to Andrea picking me up."

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May 7, 2001

Another Verdict [total: day 92]

"It has been quite some time since I have last update the dairy pages. We have booked the hotels in Heidelberg in the meantime. -
Today is the big day: the first consilium to discuss the CT scans and the x-ray pictures. Although it's just a ten minutes drive I am pushing Andrea that we leave early. If waiting for results after the second CT scan was similar to seeing Fate rolling dice, this today feels at least like hearing a jury's verdict in a death trial. The appointment is between Andrea and me plus A. and B. plus the radiologist M. It's scheduled for 19:15 at M.'s office.
It turns out that M. is well prepared. He has read the CT reports and looked at the pictures. I give him the x-ray of the lungs of 1999 taken by my family doctor. It turns out that the x-ray of my lungs of 1996 is not available. As A. and B. haven't arrived yet he asks for a few minutes privacy. When A. and B. arrive we all meet in M.'s office.

Did the jury reach a verdict?

M. attaches the x-ray slide of 1999 to the light panel at the wall and summarizes the results of the CT scans. In his opinion the x-ray proves that the suspicious metastasis at the base of the left lung is not a metastasis at all, thus not due to cancer, but a swelling that has decreased in size and was due to a scar from a former pneumonia. Jabadabadoo!
He then comes back to the CT pictures and explains the small subpictures of a few CT slides. The retroperitoneal lymph nodes have decreased in size. But there are still some of 5 mm in size. A. and M. start a discussion about the location of these lymph nodes and the probability that a tumor in the right testicle spreads to the area right or left of the aorta.

I still can't believe it, so M. replies to my hesitation very convinced and convincing: There is no doubt about the lung location for him.
A. recommends to do the retroperitoneal lymph node dissection (RPLND) as the next step. According to him there are three possibles results of that operation: a) there is no tumor mass found in the lymph nodes, b) there is just mature teratom or c) there is still vital tumor mass existing. Just alternative c) would mean another chemo-cycle, a) and b) would end up in the wait and see strategy.

I am given all the pictures for our visit in Heidelberg. I add that I would need a few copies of some reports from my file for the visit to Heidelberg. No problem, the file is at the accounting department at the moment. It should be back Wednesday afternoon. I will get the copies then.

When we are leaving the hospital Andrea seems very relieved. I need some distraction. We decide to go to a restaurant - the first time since February.
When we are back home I am still not relieved. I keep thinking about the next logical step. As I know from my own research and from A.'s words: this RPLND surgery. I haven't yet fully understood what it means so I search the Internet for more detailled information.

RPLND means a serious operation, lasting three to six hours, some say to ten and twelve hours if there are complications. Basically they open your belly from just below the sternum to the area below your belly button, pull out everything that is inside and in the way, dissect the lymph nodes where the cancer sits, put everything back in and staple the skin together again.
Sounds interesting! I learn from a Dutch study report that is available online about the risks: paralytic ileus, urinary tract infection, lymphocele, retrograde ejaculation...

That's tough! I am totally nervous, like a maniac, and scared to death because of the side effects..."

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End of Part 1 of Marcus' Cancer Diary.

Please read on in the second part of the diary.

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