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

Marcus' Cancer Diary - Part 2:

This is the second part of the diary notes Marcus took while being treated for testicular cancer (you can read the first entries here):

May 8, 2001

Getting Prepared [total: day 93]

"I call my family doctor to tell her about the result of yesterday's meeting. She asks whether they had brought the old x-rays of 1996. I deny and she strongly recommends that I should get them myself. Although we had one x-ray of the period before the cancer appeared and this was always sufficient to me, I start getting unsure. Maybe another x-ray makes the last doubts go away.

I call the central archive where pictures are kept for some years. They are quickly found. I am told I could pick them up whenever I wanted to. Another phone call to the secretary of the urological private outpatient's department to make sure the copies of the reports are really prepared."

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May 9, 2001

Fear and Sorrow [total: day 94]

"It has not been easy since the meeting on Monday. All of my thoughts keep coming back to the RPLND surgery and its risks and side effects. I am scared to death; for the first time since it all began in February.

It's like a box fight between my thinking and my feeling. Yes, I know there could not have been a better outcome on Monday. I should feel relieved and happy. But it's the opposite. I am unable to listen to others. I can hardly reply to them as I don't pay much attention to their words. Nobody's. I am isolating myself. I am shutting down.

Even my colleague's visit doesn't change a lot. She stays for about an hour. I am glad to see her again. We mainly talk about business issues. The team has a very difficult time: a lot of changes that directly and negatively effect their projects and thus their motivation. Nevertheless it's hard for me to follow my colleague's statements...

I cry a lot during the day.

The group in the afternoon helps a little bit.

Still the fear keeps coming back..."

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May 10, 2001

Finding Out [total: day 95]

"I get up early as it is collecting the copies of the medical reports today. I begin by driving to S. to get my blood tested. From her office to the hospital's building with the central archive it's a fifteen minutes drive by car. The lady at the archive remembers my name. The pictures of my lungs of 1996 have already been fetched. It's just hello and goodbye, a quick visit.

A short distance walk from the archive to the department of urology. Here everything is well prepared, too. I get the copies I asked for yesterday.

Being back in the car I notice that I must have overlooked a sentence in the second report of the pathologist when I first read it during my hospital stay in March. It says something about my tumor being quite exceptional and that there shall be a second opinion being retained from another pathologist. - A second opinion? Exceptional? Noone has told me before. Especially as the report explains that the tumor mass did not react to AFP antibodies, but to PLAP ones. Why have we focused on AFP tumor markers then?

I must have this report of the other pathologist! Today!

Being back home I call the secretary of the pathologist who wrote the original report. Yes, she will have a look. Minutes later I get a call back. She explains that she couldn't fax the papers due to the information being strictly confidential. And since she didn't know me nor my voice she could only send it to my postal address by mail. I admit that I understand, but that this may be too late for our trip tomorrow. After some discussion she agrees to fax it to the secretary of the private outpatient's department who knows me and who then forwards it to me by fax.

The report just says: There are no further discoveries. The second pathologist fully supports the first one's opinion. It's a blastomatous teratom.

Blastomatous? What's this now?
But as it is just of help for the detailled diagnosis and the why of the cancer, it's not time critical. I decide to ask D. in Heidelberg and the team home next week."

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May 11, 2001

Heidelberg [total: day 96]

"I am a little bit nervous about the journey today. I did not sleep very well last night and feel absolutely exhausted this morning. Will I stand the long drive in the car?

Part of my beard has continued to grow - or better: to reappear for the last few days. Thus, I decide to use the trimmer for the first time in about eighty days. It takes 10 seconds as it is just a very small area on the chin that is longer than 1 mm, but it's a start. Still no signs of pubic hair whereas the hair on my head keeps on growing: very sparse, but at least 5 mm in length.

The trip itself is not easy for me as it is a bright and sunny day of 25 degrees Celsius. Too hot for a post-chemo patient. Andrea drives the car. We stop at least every hour. One break is in Bingen where we go for icecream under green trees at the banks of the river Rhine. If we didn't go to a tumor expert it could be the beginning of a nice weekend break.

The hotel we booked for the first three nights turns out to be in the middle of nowhere, more precisely about 25 km south-east of Heidelberg, in Neunkirchen. But it is a very fine one, member of the Relais de Silence group: pool, golf course, tennis court, big garden, clean and spacious rooms, nice restaurant, nearby forest, ... Almost holiday as I said."

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May 14, 2001

A Second Opinion - Stage III [total: day 99]

"Andrea and I had a great weekend. We relaxed by visiting some historical sites like castles along the river Neckar, monasteries or well preserved late-medieval villages. We made picknicks in beautiful landscape,- the area east of Heidelberg is truly worth visiting - and met a good old friend of mine on Sunday.

We leave the hotel in Neunkirchen on time this Monday morning and Andrea drives us to Heidelberg. The nearer we come to the city center the more nervous and worried I become.
How foolish, it's just another opinion we are after.

I am so distracted that I tell Andrea to go north instead of south at a certain junction. We lose about fifteen minutes.

The hospital is being refurbished at the moment. A lot of noise and some dust outside, but inside it is just like every other hospital I have been to, though being quite modern. It is 15 minutes before our appointment is scheduled when we enter the building. D.'s office is on the third floor. I have to fill out a form with address details, business as usual.

Minutes later, D. asks us to come into one of the examination rooms. We introduce ourselves and I quickly explain why we are here. It turns out that he and A. know each other and are both team members of a cancer committee in Germany.
I had prepared some overview pages with the most important information regarding my testicular cancer and the opinions from the team at home. After some inquiries from D. and a talk of about 15 minutes in total he leaves the room with all the CT scans and x-rays to see his colleagues. We are asked to wait for his return.

It is like another time appearing in front of the Last Judgement. It is getting worse as time passes. 10, 15, 20 minutes...

When he returns he explains that the radiologist and his team are not sure about the lung locations either. Nevertheless and especially because of the size decreases of the suspicious masses at the bases of the right and the left lung that can be observed on the picture of the second CT, they favour the interpretation of metastases.

That makes me a stage III patient now. Still with good prognosis but as the metastases have spread into the area above the retroperitoneum it's no longer IIB. Puh!

D.'s recommendation is to apply a third chemo-cycle (as is standard for stage III) followed by a thoracotomy, the RPLND is less critical to him.

As Andrea and me seem a little bit shocked he offers a quick visit to the thorax surgeon. Without having an appointment, just by making a phone call, we get a meeting with Di. We are immediately taken by D. to his colleague Di. who checks the critical CT scans. He also supports the recommendation of D. and of the radiologists: A thoracotomy is mandatory.

We return to D.'s office and fire away a lot of questions. All are answered. Only the uncertainty about the lung locations remains. It has become less science but more guesswork and art now.

At the end of the meeting totalling at two hours D. dictates the report in front of Andrea and me. Both of us have a good feeling and calm down eventually. I particularly like the interdisciplinary approach.

When we leave the hospital again, I feel dazzled. What will A. back home reply to this?
I call A.'s secretary to make an appointment for tomorrow. 13:00, we will have to leave Heidelberg early on Tuesday morning.

We drive to Heidelberg, check in at the hotel which I had booked earlier. It's in the center of the town and we spend the afternoon and evening in Heidelberg.

The later it gets the more twisted my brain becomes. Is that now the best way of handling this disease? What will happen if A. disagrees?

Well, quite easy. Then it's us and eventually me making the final decision! Still I would feel better if we had a common agreement..."

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May 15, 2001

A Reply [total: day 100]

"I hardly slept last night. Still I must have dreamt because I remember moments of nightmare. Although I can't remember what it was in detail.

We have breakfast in our wonderful hotel and leave as soon as we have finished to head north.
It takes less time than we estimated, mainly because of almost no traffic jam or tailbacks. When we arrive in Düsseldorf we drive home first as there is plenty of time left.

We get to A.'s office on time. He is very friendly though apparantly being a little bit anxious to read the report with the second opinion. We are joined by B., the doctor who applied most of the chemos.

After having read the paper A. agrees to the third chemo-cycle. Still he doubts whether a thoracotomy is feasable. He holds M.'s interpretation of the suspicous lung locations as being no metastasis in high esteem (M. being his radiologistical colleague). A. adds that M. is a very experienced doctor and he has worked with him for a long time now.

B. supports the idea of applying another chemo, too. But both favour a RPLND as the next step after the chemo. They would not pathologically check the lung location as this would also be very serious surgery. Rather they favour the RPLND only followed by a wait and see strategy; of course just if the outcome of the RPLND was good.

At the end of our meeting A. made an offer to help us: He will take all my pictures and reports with him when he is visiting the USA next week. He is a buddy of two eminent American authorities (one of which is Lawrence Einhorn!). He will show Einhorn my case and ask him for his opinion, too. - Great!

After being turned around 180 degrees again I am supporting the chemo option at the moment. It seems most logical to me to do a third chemo.

Also, this chemo-RPLND-strategy seems an option I could live with in terms of burden. And my gut feeling agrees. And I have three weeks time now to rethink it all over and over again as the third chemo-cycle will take until June. The third chemo-cycle will start the day after tomorrow."

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May 17, 2001

A Lot of Pain [total: day 102/ chemo-cycle 3: day 0]

"As Andrea is working early today it's my father's turn to drive me to the hospital. We arrive at the private outpatients' department and learn that the lady at the inhouse registration is ill today. So we have to leave the building again to go to the central registration office at the main entrance. There I learn that the computer system has crashed and I will neither be able to get all the printed paperwork for the ward nor to load my phone card.
Nevertheless we return to the department of urology.

It's again the sick bay on the second floor, even the same room I was in during my first stay. I have a neighbor, a fine man in his fifties recovering from an operation at his kidneys. I pray to God that he is not a passionate snorer.

I know that day zero of a chemo-cycle is always watering: getting the kidneys running at full capacity. I will have an arm catheter and at least five liters of sodium chloride will be injected. Tomorrow I will get the central venous catheter for the cytotoxica.

After three hours of waiting I am quite surprised when being asked to walk down to the operation area to get the central venuous cathether already today. The nurse tells me that I should walk and she will pick me up with the bed afterwards.

So I do and am relieved as it turns out that it's M.'s turn again. He has already laid my first two catheters and I hope that it's just routine today. The last two were laid into the right part of the neck so I presume it will be the left vein today.

I have to get onto one of the mobile operation tables and am driven from the operation lock into the internal wake up room where the surgery will take place. I am not that nervous because I hope that the problems of the second time will not occur as there is no previous prick of a needle visible on the left side.

I am right. Also M. suggest to go for the left throat location. A nurse is his assistant today. They prepare everything, clean the skin on the throat, put the sheet on my face and anaesthetize the area. I ask the nurse to hold my hand. It hurts when M. does his first attempt to get the catheter into the vein: missed it. The second attempt is in, but the catheter can't be pushed forward deep enough. Maybe it's not in the correct vein. Off again. The third attempt misses the vein itself again. It hurts not only in the throat, but the pain also expands into the whole arm. I start sweating and need more anaestetica. The forth attempt hits the vein. My body shivers. It hurts in the left hand this time. M. explains that there are nerves of the arm where he tries to get the catheter into the flesh. He pushes the catheter into the vein, but again he can't fully get it in. I start moaning. M. suggests to change the side and try the right throat location.
He puts a plaster and a compression bandage onto the left location and we start all over again on the right side. Cleaning, anaesthetizing and pushing. Thank God it's in the first time. He is also able to push it forward the required 16 cm. He stitches the catheter to the skin and we are done.

Seconds later I notice that I am no longer able to fully inhale. My left arm is completely immobile and I can't feel my shoulder. M. explains that this is due to the amount of anaesthetica he used. It will take three to six hours until it disappears. It's not dangerous at all. He adds that it might be that the radiologist diagnoses a lop-sided diaphragm. I should tell him about the problems we had.

When I am pushed back into the operation lock a young assistant of the ward expects me with my bed. I am returned to my sick bay.
Fifteen minutes later two assistants enter the room and drive me to the radiology department on ground floor. The x-ray reveals that the catheter sits correctly, not too deep in the heart. Puh!

We return to my room. For the next few hours I get a feeling of what it means to be partially paralyzed. I can't move my left arm at all.

The nurses start with the infusions.

Later in the afternoon B. comes in for the round. He is alone. It's a very careful and sensitive conversation. He does his routine questioning for the World Health Organization's statistics. Before he leaves again I ask him about his remark on Tuesday: why he wouldn't go for the thoracotomy. He explains his confidence in the local radiologist's experience and opinion. He would definitely focus on the RPLND. This should have top priority for me.

I feel quite comfortable when he leaves. As I always said: If he is not in hurry, he is quite a good doctor."

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May 19, 2001

Not So Nice Neighbor [total: day 104/ chemo-cycle 3: day 2]

"It's the second day of the cycle today. I had my first cytotoxical infusions yesterday.

My condition is quite good this morning. It's always that the mornings are the best time of the day during the chemotherapy.

I didn't sleep a lot last night. Mainly because my dosage meter had recurring problems with the cables and my neighbor was quite restless. He gets his stomach probe pulled out today.

When he dozes off for some minutes I learn that he is a passionate snorer. Great chances for the night!

Today I get all three cytotoxica: Cisplatin, Etoposid and Bleomycin. When the first one is being given I almost forget to take the Anemet pill. Cisplatin is again just a small amount and thus in very fast. Etoposid takes quite a long time today. I use to compare this type of cytotoxica with glue. It has almost a similar thickness and looks the same. Nice experience to get it injected.

I feel very sick. I can hardly stand this feeling of nausea. I am doubling up with sickness. I am getting quite restless. Moving a lot in the bed. Shutting down. Not wanting to hear or listen to anybody. Just getting up every 45 minutes to pass the cytotoxica as soon as possible. Though still not thrown up during this cycle.

Two hours earlier than I hoped I have to take the Zofran pill.

In the late evening I have to throw up quite heavily. Twice as far as I remember."

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May 20, 2001

Throwing Up [total: day 105/ chemo-cycle 3: day 3]

"What has started late yesterday evening continues throughout the night. Throwing up another two times. It is like an urge to get the cytotoxica out of my body as soon as possible. At least once every hour.

Eventually my body is exhausted and there comes the sleep.

When I am woken up in the early morning the nurses are very courteous and helpful. I am allowed to stay in bed. They will return to clean the bed and change the sheets later.

Still nausea is coming back.

Two cytotoxical infusions later it's not a sudden feeling of nausea but a constant feeling. I am sick, really sick today. Nothing is able to distract me. It's just bad today.

During the day I throw up six times, almost every hour."

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May 22, 2001

Low Blood Count [total: day 107/ chemo-cycle 3: day 5]

"Yesterday was a little better than the day before yesterday. It seems as if my body accomodates to the cytotoxica. I had to throw up a few times, but not as heavily as earlier on.

The regular blood check this morning reveals that my blood has become quite toxic. The cytotoxica are obviously working. Unfortunately they have such a toxic effect on my body, especially the liver, that the team decides to pause for a day.

Thus no chemotherapy today, another day longer in the hospital than expected.

It's just sodium chloride that is running into my veins. Still I feel quite exhausted and sleep a lot during the day."

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May 23, 2001

Catheter Ripping [total: day 108/ chemo-cycle 3: day 6]

"As the blood check this morning reveals still no improvement I learn that the fifth day of this chemo-cycle will be fully skipped. The liver is still too toxic to justify another infusion. It's just too risky as A. says during the round.

I ask B. whether there is a need to stay in hospital then. He disagrees that I could leave as my blood has to be closely monitored. Another day in paradise! But what about my central venous catheter? He agrees that it could be pulled out and will arrange it with the nurses.

Later that day it's nurse Be. who will perform the task. I get quite nervous as the neck location is still very sensitive. She pulls the plaster off very carefully, disinfects the area and is about to pull the catheter out. She cuts the stitch by which it is fixed to the skin; or at least tries to do so. When pulling the catheter off we learn that she hasn't fully succeeded in cutting. It hurts like hell. Another cut allows her to pull the catheter off. I hate these catheters!"

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May 24, 2001

Home Again [total: day 109/ chemo-cycle 3: day 7]

"My condition has improved since there was no chemotherapy yesterday either. Fortunately this development is reflected in my blood count today. It has improved!

When the doctors come for the round in the morning I urge them to let me out of the hospital. It is just regular blood checks that have to be done. And as we live just a ten minutes drive from the hospital we could do that easily by coming in every morning.

They agree.

So I am expecting Andrea to pick me up. It's a feeling of a young boy sitting in front of all the presents on Chrismas Day evening. Still it's just a short trip returning home. A cancer patient's way of seeing things changes...

I am so glad when arriving home."

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May 26, 2001

Waiting For More Chemo [total: day 111/ chemo-cycle 3: day 9]

"It's day nine of the third chemo-cycle. That means driving to the hospital to get an infusion of Bleomycin.
When Andrea drives me to the hospital we are not quite sure whether the doctors will really vote for the infusion. We arrive at the ward and nurse W. walks us into an empty room where we should wait. Ten minutes later B. arrives and we learn that he has been on night duty. ...
He takes a blood sample and asks us to wait. The blood sample will be brought to the laboratory. As soon as the numbers are returned we could start. Although it might take some time as it's Saturday.

Time passes as we wait. About an hour and a half later the nurse appears to tell us that the doctor will soon arrive. My blood numbers justify the infusion. They are just searching my file to get the exact dose of cytotoxica. About thirty minutes later we are told that my file can't be found. It seems as if B. has taken it with him when he left.

Another thirty minutes later an unknown doctor arrives. As it's Bleomycin today and as the dose of it is always 30 mg for testicular cancer patients we could proceeed. He lays an arm catheter for the infusions. He will not start with the Bleomycin immediately as had done all the other doctors. He will first wait until half a liter of sodium chloride is in.

So it's another delay. After the infusion of sodium chloride we have to wait for thirty minutes as the doctor is the only one on duty right now and as he had to go to an emergency patient at another hospital building.

When he eventually returns he starts with the Bleomycin. I ask the nurse for some milk as it has proven to help a lot in terms of nausea for me. It turns out that the doctor also wants to succeed the Bleomycin with an infusion of sodium chloride. This will be the last delay for today.

All in all this short visit to the hospital has taken about five hours. I am totally exhausted and only want to go to bed. So the day ends in resting a lot and sleeping at home."

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June 1, 2001

All-Time Low [total: day 117/ chemo-cycle 3: day 15]

"The last few days have mainly consisted of an early drive to the hospital to get my blood tested. I have changed the procedure this time. It's not my family doctor visiting me, but myself being driven to the hospital. By doing so the blood is not taken out of my veins, but can be taken out of my finger tips. That is a lot easier for me, especially with these low numbers of red blood cells. Additionally I can immediately get the numbers waiting in the laboratory where the assistant took the blood sample.

Today P., one of the younger doctors, asked me whether I was the bank robber the German police are searching these days. It must have been my look: The head scarf I wear in addition with the mask over my mouth can lead to the impression of a terrorist. But it's just protecting my life as I am heavily at risk with my blood count.

After returning home the days continued in staying at home, sleeping and reading, watching TV or listening to music. Thus not much diversion.

The condition of my mouth has become worse for the last few days. I can hardly swallow. I have to take the anaestethical pills again as there are quite a few locations in my mouth where the skin has come off.

The daily blood check reveals an all-time low of platelets today: still just 12.000. Also the white blood cells are quite low: 1.100 in total. Nevertheless my doctors vote for the giving of Bleomycin tomorrow."

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End (of the Notes-Taking)

And then there was no drive, strength or maybe interest left to continue the diary. Retrospectively, it has helped and Marcus is greatful for it.

The year 2001 continued with more cancer treatment, esp. the planned RPLND surgery on July 26. Unfortunately, this brought evidence of still-viable tumor cells in Marcus' body, so it was agreed to go for two more chemo-cycles from October until December 2001. Since then, time has passed, regular surveillence checks have been conducted, one or the other moment of relapse fear arose, but luckily no more testicular cancer cells have caused issues.

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