Recovery mail 1 : From zero to chemotherapy in 11 days…
Monday, June 21 2004
Dear Friends around the globe,
It’s been quite an interesting and surrealistic week or two for me… and also for a lot of you. The one moment I was involved in research and life at Princeton, while the next I’m on chemotherapy for treatment of cancer at Leiden University Medical Center (LUMC). Now that I’m in a better shape, I’d like to inform you all on my diagnosis, treatment and general state of mind. I’ll also provide a short historical account of events. I hope I haven’t scared you all too much - know that I’m feeling better now and that treatment has begun. This afternoon I was released from the hospital.
Diagnosis.
Last Friday I was informed that the results of the examinations showed I have Hodgkin’s lymphoma - a form of cancer of the lymph nodes (lymfeklieren) at two locations in my body. I have a bigger tumor in the space between my lungs and a small swollen lymph node in my neck (which was completely removed by a surgeon for accurate diagnosis). The bigger tumor in my chest is some 17 centimeters in it’s longest dimension and covers more or less half of the space within my chest. Quite amazing, isn’t it?
The ‘progress’ of the disease is very important and four different stages are discerned, namely: 1. in which the disease is limited to one lymph node, 2. in which the disease has spread to two or more lymph nodes but all on one side of the diaphragm (middenrif) 3. when the disease has spread to both sides on the diaphragm and possibly affects the fuctioning of an organ and 4. in which the disease has spread to one or multiple organs in the body. My Hodgkin’s lymphoma has been classified as in stage 2. From my own biochemistry/medical biology knowledge I know there is quite a difference between stage 1 and 2 on the one hand and stage 3 and 4 on the other hand. I am lucky to have been classified in the ‘earlier’ of the two as that increases the probability of full recovery.The doctors at Princeton University Medical Center (PUMC) and the LUMC found some problems with my heart, lungs and eyes (more on that later) as ’symptoms’ of this bigger lymphoma in my chest, and it is good to know that those side-effects have all vanished already or are expected to vanish soon now that treatment of the tumor itself has begun.
Treatment.
I am getting chemotherapy with the sweet name A.B.V.D. which stands for the four medicines Adriamycine (Doxorubicine), Bleomycine, Vinblastine and Dacarbazine. One session of treatment consists of getting chemotherapy in the hospital twice, with each hospital-visit followed by a two week period at home. Only the first time they wanted me to stay in the hospital after administering the drugs to see how I respond to the medication. I got the cytostatica last Saturday and I think I’m doing quite well so far (no throwing up etc). All the following treatments will be given in a polyclinical fashion with me getting into the hospital in the morning and leaving in the afternoon. Thus, one treatment will take 1 month and I will get 6 or 8 treatments of chemotherapy in total. After the chemotherapy has ended, I will receive a radiation treatment on the original location of the tumor (this is a very common part of treatment of people with Hodgkin’s lymphoma). During 3 to 4 weeks, I will need to go daily to the hospital to receive only a couple of minutes of radiation. If all goes as planned, the total treatment therefore will take roughly somewhere between 7 and 9 months.
State of mind.
I think I’m doing pretty well, given the fact that I have cancer. It is of course a horrible thing to be diagnosed with cancer and this completely disupts my plans for the near future including further research at Princeton, my planned holidays and probably most of my goals for the next academic year, but you guys all know me, there’s no way this will get me down. My girlfriend Sanne already commented that now, finally, it is possibly to sit on the couch with me and watch some television…I must admit that it scared me quite a lot when I heard that there is a chance of approximately 70% that chemotherapy will permanently abolish sperm-production and render me ‘unfertile’ for the rest of my life. I was informed on alternatives and extensively exhausted the possilities for the freezing of sperm 
- with which at any later moment artificial conception might be arranged (insemination or IVF). Frozen sperm can be used for up to 120 years and can create 30+ babies, while not increasing any chances of birth-defects. Thank God for modern technology. I feel the urge to share with you that while the doctor told me that I could be less fertile already at that moment (before chemotherapy) as a result of my hospitalization, analysis of my first sperm-donation showed that while men normally have 42 million sperm-cells per milliliter, my “way larger than average” ejaculate contained some 117 million sperm-cells per milliliter. Ha, so much for fertility-problems… (maybe I should have asked for a bucket)Furthermore, irony wants it that since I will have to do another research project next year to complete my studies at Leiden University, during the last weeks at Princeton I was just starting to look at the possibilities of a research project at the Dutch Cancer Institute in Amsterdam (Nederlands Kanker Instituut). Maybe all this mess will make me a more qualified student for a small research project there…
Short historical account.
Two weeks of my life at blazing speed with the focus only on medical stuff.
At first I only had problems with sleeping because of continuous coughing and some form of short-breathness which didn’t go away by using a standard-medicine which I use for treatment of my very mild form of astma. After two weeks of not sleeping, I went to the doctor who prescribed me some standard medicine because of ‘pollen in the air’ (which is very sensible - everyone had problems with that at the time) which yielded only minor improvements. The doctor already concluded my right lung wasn’t working too well and decided to give me a short treatment with Prednisone, which worked very well (and as I learned later also breaks down tumor-tissue) but after three days the original symptoms reappeared together with a very localized pain in my lower right lung. I went back to the doctor and they made an x-ray of my chest - from here the fun starts. I saw the x-rays right after they were made and my left lung differs from my right lung as black and white (quite literally in the case of this x-ray). Very soon three doctors were in the room discussing that my right lung was some 90% down - I surprised them quite a bit by being able to walk and talk in full sentences. Nevertheless, they gave me oxygen directly and sent me to the hospital (PUMC) by ambulance [for family: Emma, the beautiful daughter of Chris and Tracey, was born there!].
I spent the first day on the emergency care department and I started getting more doubts on my situation when they started doing electrocardiograms and ultrasound measurements of my heart. When they performed a CT-scan of my lungs the main doctor of the radiology department - although definitely not required to - directly came to me to explain that I had a serious problem because a “growth” of some 17 cm was in my chest between my lungs (I indentified “growth” directly with cancer). In that conversation he told me this will have to be treated with chemotherapy and possibly radiation-treatment. Other doctors found that I had a swollen lymph node in my neck on that first day - and actually already then I thought I probably had Hodgkin’s lymphoma, since apparently my lymph nodes contain the cancer-tissue and the upper right lung is very close to the right side of my neck (Hodgkin’s lymphoma spreads according to the connections of the lymph nodes). So although you’re not sure what’s wrong until a full diagnosis has been stated, on the first day I was already pretty close with a preliminary analysis. At least the ’seriousness’ of the problem was clear from the first day in hospital.
In close collaboration with the doctors we decided that the cancer would not be treated at Princeton but that I would be stabilized for flying after which treatment could start at Leiden. At that moment and also in hindsight, I’m very happy with that decision. There were two problems with me flying to the Netherlands which had to be taken care of, my heart and my right lung.
- First, there was some build up of water in the little sack around my heart: there was some 0.5 centimeters of water at the back of my heart and some 3 centimeters in front of it (near the front of the chest). There should be no water in this sack at all and a build up of water could potentially yield problems (a higher pressure in this sack prohibits correct heart function, since your heart needs ’space’ to beat) and the doctors didn’t want to take any risk with me getting on an airplane. Under local anesthesia (!) they placed a ‘catheter’ (tube) from outside my chest into the sack around my heart. They bring in a needle, then a small rubber tube, then insert a small metal wire like a screw in the small rubber tube, then take out the small rubber tube, then put a bigger tube over the metal wire and then unscrew the metal wire. A very interesting experience I may say so. They took out 75 mL of water on the spot and during the following night an additional 230 mL poured out of the drain. The next day they removed this drain from my heart sack by just pulling it out without any anesthetic… a very weird feeling. So much for that.
- Second, there was water in my right chest. Where water resides, there is no lung, so to improve my breathing capacity for flying they wanted to remove this water. This water resides in the interpleural space - and should not be there at all. Again, the doctors didn’t want to take any risk with flying when pressure is much lower than at sea level (despite the fact you’re in a pressure-cabin). They inserted under local anesthetic quite a similar drain through my right chest to the interpleural space. They expected a little more than 1 liters of water to be present in my right lung, but the moment the inserted the drain some 2.2 liters of quite yellow water poured out at an amazing speed. It felt a little weird and is very strange to see so much stuff coming out of your own body. After this procedure I needed to recover. My heart rate was a high with 110-120 beats per minute and showed nice sinusoidal movements up to higher heart rates and then quickly back to 110-120. I was attached to a ‘instantaneous’ heart rate meter, which means that if my heart beats three times fast after each other the meter says “185 beats per minute” and completely freaks me out. Kim, a nurse from the PUMC, was my guardian angel at this moment of need and comforted me with her presence and nice talk. More then once it happened that when Kim left the room my heart rate went up with 50 beats per minute… and Kim came back in to comfort me. You’re absolutely great, Kim!
I recovered during the next two days and doctors were absolutely sure I could fly back to the Netherlands. My mother arrived the day before we left and escorted me back to the Netherlands. It was decided that I would fly with the drain still in my right lung - so water could come out if necessary. I was taken with an ambulance to Newark, flew to Amsterdam with a stopover in London and an ambulance brought me to the LUMC. Sunday a week ago there was I repatriated! I knew something about the MRSA-bacteria which live in hospitals in most countries, but not yet in the Netherlands. These bacteria are not very harmful, but can infect weak people. The big problem with this bacteria is that it is resistant to all but two forms of (very expensive) antibiotics. Since I was coming from a hospital from the US, I was regarded as a potential-MRSA-carrier and was given full isolation to protect the hospital from me. Everyone who wanted to visit me (doctors, nurses, family, friends) had to wear yellow aprons, gloves and masks. Not a very cosy situation, which lasted up to last Saturday. So much for communication by facial expressions in those days.
At Leiden some other interesting procedures were carried out to come up with a final diagnosis and plan for treatment. They removed the swollen lymph node on the right side of my neck for analysis (they need to analyze cancer-tissue for a confident diagnosis). They performed a punction of the bone marrow and took out some bone itself (no fun). And… They took out some brain-liquid… they can do this by putting a needle between the bones of your spine to the canal where your nerves reside which are bathing in the same liquid as your brain. This procedure was performed to make sure the cancer had not spread to this liquid (which it didn’t). Wednesday they removed my lung catheter and on a couple of occasions they took x-rays and once completed another CT-scan (this time of my lower stomach to see if there were swollen lymph nodes there).
The last thing I can elaborate on is that by coincidende I saw on the flight in the mirror in the restrooms that my right eye-pupil was smaller and the eye-lid of my right eye was lower than was the case in my left eye. At Leiden this was diagnosed as the Syndrome of Horner which is very often caused by swollen nodes in the top of the lung (exactly what was the case). This should become less directly when treatment starts. Saturday I got the chemo-therapy and although I have felt better, I’m not complaining, since side-effects so far are rather limited. Over time I will my immune-system will go down (and I will become bald), but it is at least comforting to know the direct side-effects of the treatment aren’t that strong.
Oh well, will see how it goes. Let’s just say : one dosis of chemo-therapy down, and a maximum of 15 more to go.
THANK YOU ALL!
I can’t thank you all enough for your support. My family in New Jersey and (lab-)friends in and around Princeton especially helped me so much with practical stuff (arranging flights, packing bags, emptying my room, moving my car) and most importantly gave me all the support and warmth I could possibly hope for in a such a situation from my close friends. You guys spent as much time with me in the hospital as I could handle and I really really appreciate your love. All my family spent so much time with me. I know that I definitely have made great friends and have great family in Princeton. Thank you so much.
My friends and family in Leiden did a great job at keeping my friends informed which unleashed an enormous flow of postcards to my room in the LUMC which is very comforting and much nicer to look at than those sterile white walls. Thank you for all these cards.
Finally, I must thank my girlfriend Sanne, parents Theo and Marga and brother Martijn, who dropped everything they were holding and did a splendid job at making me feel more at home at the LUMC by spending lots of time with me, despite the fact they had to wear those stupid gloves, mouth-covers made out of filthy rubber and yellow aprons all the time.
I feel sorry I have to confront you guys with these problems of mine, but I feel confident we’re going to handle this little bump in the road in the right way and I’m looking forward to the moment we will meet in more pleasant non-hospital setting. Since getting visitors is great and strenuous at the same time I think it would be wise for me not to ‘overdo’ this during the first couple of days/weeks and just see things develop (in 11 days I will get my next dosis of chemo-therapy). But in any case I’ll try to catch up with you when I feel I’m able to. I’ll keep you all informed on my situation and hope to see you soon.
At least I get to enjoy the great Dutch summer… yuck!
Regards and lots of love,
Rogier