Oh yes, baby! These were the best 4 hours, 23 minutes and 29 seconds of my life. Finishing the New York City Marathon was a euphoric victory. The back of my medal rightly reads: “A thriumph of the will over all limits”. Finishing made me feel so full of life and proved I’m still capable of legendary achievements.
I fucking did it!

My Road to Recovery started June 8 2004 with the diagnosis of cancer. On November 4 2007 – my 27th birthday – I finished the marathon of New York. I wrote in a small font on the back of my shirt “Best birthday ever” – and it surely was. Milestones don’t come any better than this. I am profoundly thankful for my recovery so far.

This will be the end of this blog. Something new will surely emerge, yet there is no better end having completed the road which led from chemotherapy in the hospital to finishing the marathon in New York City. My first posts title was “From zero to chemotherapy in 11 days…” – who would have believed I would finish the marathon 3 years later? I thank everyone who loved and supported and believed in me throughout these years with whole my heart!

Livestrong! Rogier

Reading the draft-text now feels awkward, as it comments on my last activities before all hell broke loose and brings back memories of those last awkward weeks. Already quite before the last week in which there was no denying I was gravely ill, I felt most strange, unsure, and above all : without any focus. I could not concentrate on anything those last weeks. I tried to get things done in the lab, but no matter how hard I tried to work I achieved absolutely nothing. No focus.

Well here it is : draft of PU-mail number 10. I wrote it in Dutch and hope you like it. The first sentence was more valid than I could anticipate : “What a month!”.

—

PU-mail 10 : Has your overweight dog lost a step or two?

Beste Vrienden en Vriendinnen,

Wat een maand! Mijn roommate is terug naar Duitsland, ik ben verhuisd op de campus, 18.000 alumni van Princeton kwamen terug naar hun alma mater voor de Reunions en het collegejaar is afgelopen voor alle undergraduates. Oh ja, en Pedigree is een grote advertentiecampagne op televisie gestart om hun nieuwe dieet-hondenbrokken in de markt te zetten met als slogan “Has your overweight dog lost a step or two?”. Je ziet dan een te dikke hond vertraagd over het scherm lopen terwijl alle slanke hondjes in de achtergrond in draf passeren en een hoop plezier met elkaar hebben. Gelukkig knapt de hond zienderogen op wanneer hij de speciale dieet-brokken van Pedigree krijgt! Heel bizar. Overigens kunnen de meeste hondenbezitters ook zo’n low fat-hondenbrokken-dieet gebruiken (misschien moet ik dat ideetje maar even naar Pedigree opsturen). Hoe leg je dit uit aan de rest van de wereld?

Het leven is hier vrij sterk veranderd nu het collegejaar is afgelopen. Alle 4600 undergrads naar hun ouders zijn vertrokken (of hun zomerstage – het is vrij gewoon in de zomer onderzoek te verrichten of bij een bedrijf te werken). En ook veel visiting graduates zijn terug naar waar ze vandaan kwamen. Zo is mijn roommate Tasho terug naar Duitland en zijn ook Henning, Valentin, Ed etc etc vertrokken. Het begint hier flink doods te worden. Eén graduate vertelde mij dat de zomer ideaal was omdat “het dan uitgestorven is en verschrikkelijk heet, terwijl alleen de labs en de bibliotheken airconditioned zijn. Ideaal om te werken dus”. Misschien ideaal om te werken ja, maar gezellig klinkt het niet. Gelukkig woont iedereen ergens anders, wat leuke mogelijkheden biedt voor toekomstige vakanties!

Het is nauwelijks te beschrijven hoe de drie dagen van de Reunions waren. Zo’n 18.000 rijke alumni kwamen terug naar Princeton. Iedereen was oranje gekleed en heel de campus was verbouwd : bekijk de foto’s en de filmpjes op de site! Het blijkt dat vooral de lustrumjaren vrij compleet naar Princeton terug kwamen (dus alle classes die een factor van 5 jaren zijn afgestudeerd : class of 1999, 1994, 1989 etc). Overal op de campus stonden grote feest-tenten waar vijf “jaren” samen verzamelden : dus een tent voor de classes van 1960-65 etc. In elke tent was drie dagen lang gratis drank en eten te halen en elke dag live muziek. Het leuke was dat de muziek afgestemd was op de jaren die in die tent verbleven : de 45-50 tent has dixie-muziek, de 65-70 tent had een beatles-cover band en bij de 90-95 tent had een dj.

Het hoogtepunt van de Reunions was de P-rade : een optocht van alle “jaren” in Princeton-kleding. Voorop mocht de class van 1979 (25 jarig jubileum). Niet zo gek ook aangezien zij met zo’n 500 man in deze drie dagen zo’n 5.5 miljoen dollar aan de universiteit hebben gedoneerd… Daarna werd de volgorde bepaald door ancienniteit. De jongere klassen staan langs de kant en sluiten aan wanneer het hun beurt is. Er zijn speciale liedjes waarmee klassen elkaar groeten en wij deden natuurlijk volop mee in deze gekte. Van de class van 1925 was 1 man aanwezig die met een golfcart werd rondgereden: hij moet zeker ouder dan 100 jaar zijn. De man van de class van 1931 werd als waren held binnengejuicht omdat hij de oudste man was die de optocht lopend aflegde. Ik kan het moelijk beschrijven : de foto’s geven een betere impressie. Het spektakel duurde zo’n 3 uur.

Hoewel het een detail is in het geheel geeft het vuurwerk dat afgestoken werd op de Reunions een goed beeld van hoe zaken hier worden geregeld en hoeveel geld hier beschikbaar is. Er werd vuurwerk afgestoken, maar natuurlijk niet zomaar vuurwerk. Het vuurwerk werd verzorgd door Garden State Fireworks. Dit bedrijf heeft als eerste een combinatie van muziek en vuurwerk gerealiseerd (“musically choreographed displays” waarbij het vuurwerk dus afgestemd is op de muziek die wordt gespeeld) en hebben daarmee alle mogelijke internationale prijzen gewonnen. Het is zelfs zo erg dat hen is gevraagd om een paar jaar niet mee te doen met internationale wedstrijden om de competitie een kans te geven. Zij zijn de exclusieve leverancier van vuurwerk aan World Disney (grootste verbruiker van vuurwerk in de wereld). En zij worden dus geregeld om hier voor wat alumni vuurwerk af te steken. Het was erg indrukwekkend. Leuk was ook dat ze een lied van Princeton hadden voorzien van vuurwerk. Ik heb een filmpje op de site gezet.

Ik ben verhuisd naar het Old Graduate College [nieuwe adresgegevens + telefoonnummer : zie mijn signature]! Mijn kamer is onderdeel van het North Court en daarmee schitterend gelegen en zeer ruim. Ik heb twee kamers tot mijn beschikking en deel een badkamer met een vriendelijke jongen die politicologie studeert. Hoewel ikzelf erg veel geluk heb met de kamers die mij zijn toegewezen dit jaar, is het Housing Department het enige onderdeel van de universiteit hier die eens grondig gereorganiseerd mag worden. Eerst kregen we de “absolute garantie” dat we ook in de zomer in 1903 mochten blijven wonen – wat een foutje bleek. Toen werd ons verteld dat we voor 4 juli moesten verhuizen en toen… kregen alle 25 graduates die nog in 1903 een email op 2 juni om 11.15 uur dat er een foutje was gemaakt en dat we DIEZELFDE dag nog moesten verhuizen. De bouwvakkers liepen al door ons gebouw om dingen te slopen. Grappig genoeg hadden ze ons eerst van internet afgesloten en hebben ze ons daarna pas de mail verstuurd. Chaos brak los… Mooi detail is ook dat als je replyde op de email je een automatisch “out-of-office” bericht kreeg. Is het niet geweldig ?

De undergraduates hebben trouwens een mooie uitdrukking voor het Graduate College : “Where the third world meets the nerd world”. Ik vind het een heel typerende opmerking voor de undergraduates omdat als ze werkelijk de graduates zouden leren kennen ze zouden zien dat er nauwelijks studenten uit de Third World zijn. Enkel de First en de Second World is vertegenwoordigd op Princeton. Maar dat van de nerds is natuurlijk wel terecht .

En… Mijn ouders zijn zo’n kleine twee weken overgekomen naar de VS! Het derde bezoek (!) van mijn ouders dit jaar was wederom erg geslaagd en het is volgens mij ook nog goed gelukt om hen dingen te laten zien die ze nog niet eerder hadden beleefd. Een uitstapje naar de gokpaleizen in Atlantic City was een indrukwekkende ervaring (die een 25% grotere omzet hebben dan die in Las Vegas!). “AC” ligt aan de zee en het is best grappig om over het strand lopend de zon te zien ondergaan in het land in plaats van in de zee. Daarnaast zijn we naar een wedstrijd van de NY Yankees geweest en hebben we de wijk Brooklyn doorwandeld. Deze wijk van New York vind ik zelf erg gezellig – en je komt nauwelijks toeristen tegen die enkel over elkaar heen buitelen op Manhattan. XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXx

Dear Friends around the World,

Life can be tough : Sanne broke up with me in August. Sanne and I were together for seven and a half years and it was such an amazing time. Our relationship was pure, genuine and honest – I don’t think I would have changed anything if I could. We stimulated each other to pursue dreams, explore talents and think of others. Cancer and it’s treatment thoroughly disturbed the balance in our relationship, but we learned to accept what you cannot change, seize the moment when you can and focus on what is possible instead of what is not. In these times you show your real heart to each other and we made the best of it. We loved each other.

Sanne says* she has too much doubt lately. Sanne told me when I got back from a holiday in Croatia. We had planned a holiday in France one week later, and decided to go there anyway. The real shock for me came after we returned to Leiden – when we really separated.

Sanne is great – and I miss her. Her love is deep, rewarding and fulfilling. It took me weeks to merely understand what was happening and I still haven’t adapted to the new situation at all. I felt very sad, and later a bit angry: How can my love not be enough? Why are we not fighting for this relationship? How certain can you be with life in a state of flux? Of course, these are just flawed attempts at trying to deal with my feelings of frustration. I can’t be angry with Sanne – I never have been and I never had any reason to. I guess people can’t fully control their innermost feelings – and I think Sanne wished she had felt different about this.

- Paris & Parents
Afterwards I went to Paris with my parents and Died. It was nice to focus on the city, food and cycling for a couple of days. My parents told me at least 100 times afterwards that it was só good of me to gently force them to go on a holiday, for the first time after Martijn’s death. Since then they really got in the mood for holidays : they went to the Veluwe for a weekend, went to Flevoland to see wild animals and as I’m writing this, they are in Bremen, Germany, for a music festival. Keep that spirit!

- Sanne, continued
After her graduation last December, Sanne has been very picky in selecting possible future employers. This meant few applications and an thorough search for the right job – and her strategy has paid off. The Ministry of Economic Affairs hit the jackpot and hired Sanne as RijksTrainee as part of the prestigious traineeprogramme of the Dutch Government.
On top of that Sanne found a beautiful and yet affordable appartment in Leiden (that is given her new monthly check, I suppose ). And last but not least : her mother Marjan and Wim got married on July 11 in a beautiful, warm and intimate ceremony, see
http://www.van-willigen.net/weblog/2006/09/09/huwelijk-wim-en-marjan/

- Croatia
Together with five friends I went to Trogir in Croatia for two week. That was a lot of fun and you can find some nice pictures on my weblog :
http://www.van-willigen.net/weblog/2006/09/09/bs06-croatia/

- Lance Approves of my blog!
The Lance Armstrong Foundation has put up a link on its website to some 40 weblogs of cancerpatients/survivors who ‘blogged against cancer’ on Live Strong Day (May 17). By coincidence I just found out – and I’m thrilled! See my weblog for more.

- Conference on Cancer in Switzerland!
Next week I’m going to Lausanne to attend the 6th ISREC meeting on Cancer Research in Lausanne with some 25 members of my research-group at the Dutch Cancer Institute. That will be very interesting and fun at the same time.

Baz Luhrmann made a great song called ‘Everybody’s Free (to Wear Sunscreen)’ in which he suggests that the real troubles you face will always come as a surprise. There is no way to anticipate them. I guess he’s right. I added music to my blog for your listening pleasure. I will add this song, too.

“Don’t worry about the future; or worry, but know that worrying is as effective as trying to solve an algebra equation by chewing bubblegum. The real troubles in your life are apt to be things that never crossed your worried mind; the kind that blindside you at 4pm on some idle Tuesday.”

Keep in touch! And direct beautiful girls to me if you find any!

Love, Rogier

* Please realize you are reading Rogier’s email. If you want to know exactly what Sanne thinks, go ask her. Having said that, I try to be fair here.

Dear Friends around the Globe,

Disaster has struck us, as I mailed you all right after Martijn died. It still feels totally unreal to me that my brother is not alive anymore – incomprehensible. Going through cancer-treatments, I already became very much aware how important your friends are for support. Once again, I’m getting much support from a lot of you. Thank you.

- Martijn
Martijn’s funeral ceremony was strikingly beautiful. So many of you were present, it was even hard to find an empty spot to stand in the back of the church and after the burial we were shacking hands of friends and family for way over two hours. Loads of emails and cards with lots of words or without any. It is comforting to feel so much sympathy and to see we were not the only ones shocked beyond belief. My mind is a big question-mark. Why? How can I not have seen this coming? Why didn’t he ask me for help? Did I fell short in love or support or anything else? Could I have helped prevent this?
Naturally these feelings dominate since, and I don’t know the best way to move forward. I stayed at home for some three weeks and then felt I needed some daily rhythm to hold onto and therefore went back to the laboratory (more on that later). I still have a hard time concentrating on scientific articles and stuff. I miss my brother.

Marga, Theo, Sanne and I left for 10 days of skiing in Italy – we definitely were in need of a break. There was grief, sadness and confusion, but also quite a lot of fun. It did us well. Sanne amazed us by learning how to ski within days, something perceived as important in this family . Quite an achievement as she had to deal with three instructors at every moment… My parents enjoyed taking a break so much, they actually just returned from their second ski-trip to Italy.

- Since last September…
Although it’s weird to mention in the same mail discussing my brother’s funeral ceremony, fortunately I can say my health is improving at an amazing pace since my last recovery-mail from September. Before last summer, it was too demanding for my body to engage in any sports. Now, however, it is just perfect. Doing sports some two, three times a week is really helping me rebuild my body and recover my strength. I play squash mostly with Died and play korfball in a team with lots of friends. We made it to champion in our low-level league, which we celebrated extensively (see weblog for pictures).
My body starts feeling better again, although the process of “resocializing”
is not easy.

- Cancer Research
As I wrote in my first recovery-mail, right before my diagnosis with cancer in Princeton I was looking for opportunities in the field of cancer research to do my next internship. I found this interesting laboratory of Prof. Rene Bernards at the Netherlands Cancer Institute / Antoni van Leeuwenhoek Hospital in Amsterdam. Now that I was recovering I decided, after quite some thought, that this is an amazing opportunity for me to contribute a little to cancer research after recovering from my own cancer. What could be more inspiring and satisfying?

So after I followed my first course again at Leiden University from October (which I aced ), I attended an intense course in Experimental Oncology at the NCI during the whole of November. This was not always very comfortable as scientists talk quite differently about patients and survival and even my own cytostatica were discussed. The lecturers probably weren’t aware that during my treatments, only hearing the name of any of my chemotherapy-agents was often already enough to make me throw up . Classes started at 9 am sharp in Amsterdam daily for 4 weeks – something I had not been accustomed to for at least one and a half years. I was very determined to attend every single class and have done so. Sanne was quite amazed I could keep it up and was proud of me (that felt good). A small victory.

So I talked to Prof. Rene Bernards and discussed opportunities for an internship with some of his group members. He accepted me and Jasper Mullenders is now supervising me – a 4th year graduate student who also graduated in Chemistry from Leiden university. He’s very personable, intelligent and hard working. I was only one week in the lab when Martijn died. Jasper worked with me and left it up to me to return to the lab and determine my own working hours after Martijn died. I’m very lucky with this grad student with social skills as direct supervisor.

- Sanne M.Sc.
Sanne graduated last December from the University of Amsterdam with a Master of Science degree in Econometrics! Sanne got lots of praise from Dr.
Tuinstra, who supervised her when she wrote her thesis on the influence of negative feelings among the electorate on election outcomes. She threw a huge party with her two roommates, who both graduated almost at the same time. The party was fan-tas-tic and held in a crowded house across the Ij in Amsterdam (great pics on my blog!). Can I get you anything, Master?

- Dutch Odyssey
I founded this company Dutch Odyssey on January 1 2006. The company sells the advertisement space on my websites. Maarten (programming), Died (mail management), Leung (design) and Clemens (accounting) all have helped me a little or more than a little with this endeavor. Time had come to do fun things you feel like, I thought, and in December I really felt like starting a small business.

- A full 120% Fertile!
More good news to end this email. Completely against my expectations, my doctors informed me I completely regained fertility! I was tested two weeks ago. They consider sperm-counts of over 20 million/ml to be normal, where mine is 59 million/ml. Motility is perfect at 59% of the cells, where everything above 40% is considered normal. And the movement ’speed’ of these motile cells is good as well. Wow, another sign my body is recovering well from the treatments…

More than enough content for one email. I hope you all are doing well.

Keep in touch!

Love, Rogier

Dear Friends around the Globe,

An update with info and pictures on two great holidays and more!

- Upcoming.
Last week I got an x-ray to make sure cancer has left my body. I’ll get the results soon. This is the first *real* x-ray check after I finished my treatment – so I’m quite a bit nervous. This is a stressful week with little sleep and lots of thoughts.

- The best summer ever!
It felt so good to be abroad again with my backpack – a giant relief that after so long, to a large extent I’m doing again the things I like to do. And traveling was high on my list of things to do.
It started with traveling to Istanbul with five friends for three weeks : Died, Clemens, Arjen, Paul and Lennert. We go on holiday together every year and it’s always a lot of fun. Istanbul is an ancient authentic city of stunning beauty – and very European in atmosphere. We played cards in the park behind the grand Topkapi Palace and lounged at the ultra-hip Leby-i derya with smashing views on the city. The weather was great throughout. For those interested, pictures and stories can be found on my website under “Travel”.
This was followed directly by a fan-tas-tic month of traveling with Sanne throughout the westcoast of the United States. We had planned this holiday right after my time at Princeton but now were finally able to go. I didn’t really dare looking forward to it, probably being afraid it might not happen again. But even if I would have had any expectations, they would have been exceeded by far : we had a great time together! We rented a big car and drove all over the westcoast. We camped in Yosemite and Yellowstone Park. We saw dolphins, humpback whales, hordes of bison, moose, a bear at 5 meters and many more. These animals really live out there in the wild – and not only on Discovery Channel! We gambled in Las Vegas and I won back what Sanne lost .
I grew steadily stronger over the holidays and became more relaxed. Signs of mental recovery. I became so relaxed, I even let Sanne drive ! You HAVE to check out these pictures to get an impression of our 5.000 miles trip :
http://www.van-willigen.net/weblog/2005/09/01/westcoast-10-picture-highlights/ (copy in one line to the address-bar)

- I’ve read a book!
For the first time I read (and finished!) a book while on holiday – besides dozens Lonely Planets and magazines. I read Lance Armstrong’s “It’s not about the bike” in the US – and it was shocking. Although our cases are different medically – the resemblances are amazing in everything else. The book is one giant déjà vu! Sanne read it too and finds the resemblances surprising as well, especially in our attitudes. Would going through cancer involve such similar experiences no matter what type of cancer or where you live?

- Benefits? Anyone?
“Cancer was the best thing that ever happened to me”, Lance Armstrong writes after he recovered. That sounds totally ridiculous and contrary. Why would you want to have had something you worked like hell for to get rid off?

Cancer is not gentle – it forces you to go through surgery, chemotherapy and radiotherapy, to talk about rates of survival, cope with countless side effects, take in loads of medicine and makes you bank sperm and possibly remain unfertile. You are surrounded by unending uncertainty. No ’shock and awe’ as sequential treatments weaken you slowly and surely over time. Despite supporting friends, you face a lonely battle with your body. And some of the patients who do everything right to beat cancer, die anyway. This is the reality of cancer for you.

For the lucky ones who survive, however, there is something beneficial to consider. Fighting for your life is a truly transforming experience.

While cancer constantly tries to crack your skull, it makes you more “human” in the process. In the oncology/hematology department of the LUMC nobody is being the cool guy on the block or worried about how their hair is looking today (you got the joke?). Nobody is faking anything. People cry, people are scared, people feel wrecked and people smile because they live to see another day. People are real and occupied with real and human things.

What were the things I was scared of before I got cancer? Only superficial stuff and nothing compared to what cancer-patients go through any day of the week. During my treatments I felt often very weak and sometimes scared cancer might return. And I’m not the only one – there are so many patients out there going through all of this right now. That makes you humble.

Cancer forces you to think about your life and how precious it is. How valuable is living? How valuable exactly has your life been so far? What have you done with it to make it important, special or even just yours? Did you live for things or people beside yourself too? Cancer is fighting for your life, and making clear it is worth fighting for. I found this is a strongly transforming experience. It yields a certain form of determination involving appreciating life, striving for self-realization and having an eye for others. It provides some form of helicopter view on your life. Perspective.

Lance Armstrong is an example of this, too. He is determined to win any race he participates in, but he’s not motivated by any prize-money, medals or even the famous yellow shirt; he’s out there showing that the unthinkable is thinkable for cancer-patients. He inspires healthy and sick alike because he shows that a once very ill Human can win the most gruesome sports event on earth not once, but seven times in a row. He even got married twice! He proves you are limited only by your own imagination. I’m not at all surprised he says he changed from biking ‘for money’ to biking ‘for the inspiration of all’ after cancer. Lance rules.

Things to think about at night.

My name is Rogier. I live Strong.

Dear Friends around the Globe,

Rogier is back travelling. I flew back to the US to (re)visit Princeton. It was a special holiday, confronting yet good for the soul. Afterwards there was a small ‘1903′-reunion in Leiden and I prepared for a summer full of travelling! And now I’m writing an email from Istanbul, Turkey.

- Princeton
My 10-day trip to meet up with my friends, family and former colleagues at Princeton was very special as most of them saw me last in the hospital with tubes to my heart and lungs. Very kindly both my cousin Michelle and my Princeton-friend Michelle offered me a place to sleep. It’s good to have Michelle’s around . My cousin supplied me with a car (!) and my aunt Helma with a cell-phone. Together with a credit-card, there is very little else you need to get around in the US.

Chuck, my professor, threw a big bbq-party at his house and invited everyone over. The atmosphere was very relaxed and people had drinks, played volleybal or just sat in the sun and chat. It felt like I was at home. Gennady had brought a ‘New Life’-cake for me! It was fantastic.

Before, Chuck had challenged me to look after his daughter Grace and 12 other three-year-olds with him at the Nursery League School… It was great and very exhausting: the children got to paint, make
birthday-crowns, color flip-flops and participate in a joint music/gym class. I even got to explain a bit about the Netherlands (don’t worry, I kept it pretty) while my professor – an ambitious man indeed – showed them what must have been their very first chemical experiment! That was a lot of fun.

It was quite confronting to be back at Princeton, especially as the campus was in exactly the same situation as I left it last year. The last things I remember doing before being ‘diagnosed and deported’ were attending the reunion-activities (when Princeton alumni return to donate money and reinvigorate their network). Guess what – this holiday I attended
Michelle’s graduation (MSc in Chemical Engineering, congrats!) and saw another reunion taking place on campus ground. Everything was exactly the same. Where have I been last year?

I met up with my doctors and nurses at the Princeton University Medical Center as well; I was surprised to find out they remembered me. I learned exactly how bad my situation was at the time. And that was pretty bad. I also talked to my ‘case-manager’ who told me it took so long to get me my ticket only because British Airways had to do a full background check on ALL passengers boarding the airplane first as I was coming aboard with inflammable stuff (oxygen to breathe, that is). This checking took them three days. I was a terrorist threat.

And I did even more. There was a visit to New York City and a Mets/Diamondbacks-game. I practiced golf and even played a full course with my uncle Dan! That was so cool. He kicks ass at golf and we had a blast at a beautiful golf course with lots of angulation. I really need to practice more and get back to the US to play him again!

- 1903 Reunion
My Princeton-friend Michelle flew over to the Netherlands to meet up with Vincent, my roommate Tasho, his girlfriend Corinna (both from Koln, Germany) and myself for a small 1903-reunion. Henning and Annika couldn’t make it – but we agreed for a next reunion in Chicago next year and they can join then.
Despite the annoying colds and headaches of some, the reunion was very nice. We got to chat a lot and checked out Amsterdam. Both the Rijksmuseum and the Red light district. I think they liked it . I quite broke down as the Princeton holiday already had worn me out completely – the reunion followed instantly after.

- Holiday schedule
Since the reunion I’ve been arranging my holidays with friends and Sanne. With friends were heading to Istanbul for three weeks. And only three days after I return, I’ll be leaving for the West-coast of the United States with Sanne for a full four weeks. This great holiday was planned for last year, but obviously never happened. I can feel both Sanne and I are really looking forward to it, yet are hesitant to fully ‘count’ on it to happen this year.
One of the things I greatly looked forward to during treatment was travelling, exploring the world. ‘Mission Accomplished’ as far as this summer goes .

Last week I learned that I will not be allowed to scuba dive anymore. For ever. That is because patients treated with bleomycin (part of my chemotherapy-treatment) can develop a multitide of lung-related problems when exposed to high partial oxygen pressures, i.e. scuba diving. I love diving, damnit!

Snorkling from now on?… yuck

Love, Rogier

Dear Friends around the Globe,

– Surprise Party –
What a surprise-party it was!! I was absolutely overwhelmed. It was the best party in my life with the best reason for it ever.

A month ago five fantastic friends – Clemens, Died, Sanne, Evelien and Matthijs – threw a HUGE surprise-party for me to mark the end of my treatment for cancer! It was absolutely smashing and a total surprise to me! Close to 100 friends and family gathered in ‘De Poort van Leyden’ on Saturday while Sanne lured me in with a couple of lies…

After you all shocked me, Sanne and Died gave very moving speeches on the months of my chemotherapy/radiotherapy-treatment and how we all managed to get through this. I was honored with so many of you present at this party and your compliments on my attitude. See my website http://www.van-willigen.net for a lot of pictures of this party!

And there was more to come!
- Tasho, my roommate from Princeton, gave an impressive speech through a ’semi-live’ webcam-conversation, which was shown on a big screen. Unfortunately there was a glitch in the recording when he discussed undergraduate girls
- My mother sculpted this stunningly beautiful bull for me. It is very special to be given such a present. My mother argued it symbolizes the strength I showed during the treatment, my ‘connection’ with New York (you can find a huge bull in the financial district) and… my pre-treatment fertility! You might remember about the sperm-donations I wrote about in my first recovery email. Well, I only found out on that party that my parents and brother are calling me ‘Herman’ behind my back for months now! Herman is the name of the first Dutch transgene bull who has over 50 descendants…
- Henning, a friend who I met at Princeton, came over for this surprise-party with his girlfriend Soni! They came all the way from Hamburg and Muenster. Really cool that they went to such lengths to join in!
- My aunt Helma and uncle Danny from the US gave me a call to congratulate me and sent in a power-point presentation created by my cousin Michelle with pictures of Chris, Tracey and beautiful Emma as well!
- Chuck, Tuan, Gennady, Jyotishman and colleagues from the photosynthesis-research group at Princeton sent a really big and very beautiful bouquet of flowers, a photo-postcard AND a powerpoint-presentation on my time at Princeton! Although not everyone got all the photosynthesis-steps right, everyone had a big laugh and got to see nice views of Princeton !
- My cousin Patricia and Morris sent in a Power-point presentation and showed us some beautiful pictures of Aberdeen (and its nice weather…). They had sound reasons for not being with us : just recently Patricia gave birth to Thomasina! Welcome to the family, Thomasina!

KWF Kankerbestrijding
Clemens, Died, Sanne, Evelien and Matthijs put up a big box where people could make donations to the Dutch Cancer Foundation (KWF Kankerbestrijding). Even though most friends present were “poor” university students, there was donated some eur 300,-! I decided to double this to eur 600,-. A local administrator of the KWF Kankerbestrijding was very happy to hear our donation and thanked me enormously! I suggested that it was me who has to thank the Dutch Cancer Foundation – and not the other way around.

I also have to thank my cousin Raymond for making a movie of the party (which my brother is working on to convert to dvd-format), my parents for making pictures and delicious snacks (I speak for all of us on that one) and Linda and Leung for their constant work on serving drinks (I speak for all of us on that one, too!). Furthermore I’d like to thank the dj’s – or better: performers – of De Pilo’s for their spectacular shows during the evening and the restaurant De Poort van Leyden for hosting our party. The organizing committee Clemens, Died, Sanne, Evelien and Matthijs can’t be thanked enough. This was all so impressive.

– CT-Scan –
Things are going well now. Two weeks ago I received the results of my latest CT-scan and these results are good. The size of the tumor has diminished enormously due to the chemotherapy. The radiotherapy is meant to kill the last cancer-cells. A quite measurable size of scar tissue remains on the location of the original tumor, but Hodgkin is known for that and that poses no problem at all. I have regular appointments with my doctors at the LUMC.

Technical details.
The tumor has been reduced enormously during the course of my treatment. Keeping in mind tumors don’t grow in geometrical shapes, the original pre-treatment dimensions were estimated at some 16 cm by 13 cm by 13 cm. Really huge. The small tumor in near my neck was removed surgically for diagnosis (only 3 cm in its longest dimension or so).
After three months of chemotherapy the dimensions were reduced to some 10 cm by 8.5 cm by 6.5 cm. In volume this is approximately a five-fold reduction.
After another 6 months of chemotherapy this has been reduced to “something” by 6.5 cm by 4 cm (the first dimension isn’t measured exactly). This is approximately a 14-fold reduction compared to the original size.
The radiotherapy has had no big effect on the size of this tissue, as was expected by my radiotherapist. Certainly the radiotherapy has had its effect on the last cancer-cells, but the effect of radiotherapy on the size of the remaining scar tissue is negligible.
Hodgkin is known for leaving sizeable amounts of scar tissue on the location of the tumor. This scar tissue is really comparable to scar tissue which develops on your skin if you have a wound. The scar tissue will remain and diminish very slowly over time. During the first years I will be checked often to make sure that the size of this tissue doesn’t increase. As I informed you in earlier emails, chances are deeply in favor of my full recovery.

– Holidays –
During the coming summer I’ll be spending a lot of time abroad! I was looking strongly forward to traveling during my treatment.
I hope to fly to the US in two weeks to meet up with my family, friends and former research-group colleagues at Princeton (I have to inform everyone yet…). I was more or less ‘deported’ after my diagnosis and it would be nice to see each other again in a normal setting.
Afterwards, Michelle – a friend of the 1903 building at Princeton – will travel to the Netherlands (!) and there are ideas to travel together to Germany to meet up with other Princetonians for a 1903-reunion.
Furthermore, I’ll be traveling to Istanbul with 5 friends for three weeks in July and with Sanne to the West-coast of the US for another four weeks.

Party on!

Love, Rogier

Dear Friends around the Globe,

- Been there, done that.
On January 14 I received my last dose of chemotherapy. In February I went to the hospital daily for radiotherapy. And then on February 23 at 2.30 PM something remarkable happened : I finished my treatment.
To have my 14-day cycle from chemo to chemo extended with a 15th day and a 16th and so on, was already a heavenly gift. But after the radiation-treatment I didn’t have to go to the hospital for quite a while… wonderful yet very strange. Every day since the radiotherapy ended – or at least every week – I am feeling stronger than before. Now that my body has recovered from the worst blunt blows of chemo – I feel a new phase is at hand. Wait and see.

- The last long weeks of chemotherapy.
The (side-)effects of my treatment started to dominate. My sleeping rhythm was disrupted because of my heart-problems, making me not fall asleep before 5 AM, which in turn wrecked the rest of my day. I didn’t rest well when I was asleep anyway. Meetings and appointments freaked me out. My skin color was pale. I used special water from my dentist to prevent a bacterial infection in my mouth. I was bald. I vomited. The veins in my arm were hard. More than half of my toenails fell off.
My friends were absolutely invaluable.

- Radiotherapy.
Not a really big deal (in comparison, that is). The radiotherapist prescribed 15 doses of x-ray radiation, directly following my chemotherapy. Later, she raised this to 18 doses (does this give you a feeling of a déjà vu?). Of course, this radiation is much more intense than x-rays used in a x-ray photo or CT-scan. The remaining tumor-cells are especially prone to application of x-rays, destroying their DNA and preventing them from dividing and multiplying.
As preparation for the radiotherapy I got all kind of lines drawn on my chest and… three tattoos. It took quite a tumor to do the job, but now I’m a real man after all!
During the first three weeks of February I went to the hospital daily on workdays and got some 30 seconds x-ray radiation applied on the front of my chest and some 30 seconds of radiation on the back of my chest. Special tailor-made blocks of lead blocked all radiation outside the optimal radiation-area as calculated by computer, taking into account the organic shape of the remaining tissue of the tumor, the position of my lungs, bones and heart and even my personal breathing-movement. You don’t ‘feel’ radiation in any way – only the local side effects which occur after a while.
The irradiated skin turned red and became very sensitive. I had to apply talc powder daily – the perfume of the Zwitsal made me smell like a baby again. Only after all irradiation-treatments finished I was allowed to put moisturizing salve on it. The treatment caused an irritated esophagus (’slokdarm’) – preventing me from eating hot, cold, spicy or tough food. Also my lungs were irritated sometimes causing a heavy coughing-attack for some minutes. Nevertheless, I was very happy in this period for not having to go through chemotherapy anymore. I became more human everyday.
Friends of mine surprised me by dropping by the hospital after my last radiation-treatment and drinking Champagne with me on the big square in front of the Leiden University Medical Center. It was pouring and windy and cold, yet a whole lot of fun. Afterwards we had a wonderful (tipsy!) lunch together.

- 231496 out of 231497 is very good.
After the problems with my heart which I reported in my last email, my hematologist sent me to cardiologist. The cardiologist thought the problems I experienced a couple of times could be cardiac auricle-arrythmia (“boezemhartritmestoornissen”). This is not dangerous in my situation, but in order to make sure my heart was in sound condition he decided to perform two investigations : an echo-doppler and a holter. He said I was the youngest patient at the Cardiology department and promised to look well after me.
The echo-doppler is the same type of investigation pregnant women get when they see their unborn child in black and white on a ’sonar-screen’. It is amazing : because of small doppler-effects (changes in frequency of the reflected sound waves caused by the flowing blood) they can measure all flowing speeds of your blood in the different sections of your heart. Very cool. I asked the nurse whether it was a boy or girl, but she only said everything was looking just fine.
The Holter-investigation was something interesting as well. They put 7 electrodes all over your chest which are connected to a small portable computer in order to make a continuous electro-cardiogram (ECG) of my heart for 48 hours. I wasn’t allowed to take a shower, but otherwise I could behave normally. I was impressed with the results of the analysis afterwards: of the 231.497 hearts beats measured during these two days, exactly one (1) heartbeat was out of rhythm, a little too early. Furthermore, I experienced some heart-problems during the measurement, but the ECG didn’t show any aberrations at that time. Conclusion : I do suffer from the side-effects of the chemotherapy, but my heart is in perfect condition. I was very satisfied with these results. Since I finished my treatment, the heart problems already diminished to less annoying levels.

- Cold Turkey.
Sanne and I had enough of it all and went to Belek in Turkey for 1.5 weeks in a great 5-star hotel, Xanadu Resort. An amazing place in the Turkish riviera, with everything included from bowling to dining in one of the 6 available restaurants. We had 2 days of great weather and had fun in the sun. We rented a car and visited Antalya and some beautiful ruins nearby. Since it was low-season, we practically were the only tourists around. We had the fantastic ruins of Termessos all to ourselves. Fabulous.
Unfortunately, Sanne’s grandfather passed away at the age of 92 in the Netherlands during our trip and we returned a couple days earlier than anticipated for the memorial service.

- My new handicap!
I have to inform you that this handicap is here to stay. And I will go to great lengths to improve it. Last Monday, Clemens, Matthijs and I passed our golf-examination (‘golfvaardigheidsexamen’), allowing us to play on every Dutch course/ Officially this GVB-exam automatically yields a EGA-handicap of 55, but we don’t tell anyone afraid of being laughed upon . Hopefully this number will come down sharply during the coming months.

- Medical prospects.
In the coming year I will see my doctors every 2 months and will get x-rays photo’s taken more or less every 3-4 months, with a more precise CT-scan somewhere next winter. On April 20 I will get a CT-scan and all future photo’s and scans should reproduce that image.
There is no perfectly fitting study (for only people my age, with my health, with Hodgkin’s disease in the same phase, etc), but huge studies show that Hodgkin-patients like me have something like a 80-85% chance of being cured and never seeing their cancer return.
Almost all patients who do see cancer return, see this happens within say 5 years after their treatment. If the cancer doesn’t return in those years, chances are very very small it will ever return. Again, fortunately Hodgkin’s disease is a form of cancer which is very curable.
My doctor stresses that I have received the ‘optimal treatment’ with the maximum doses of chemotherapy and the maximum doses of radiotherapy allowed. This should do it.

- A new phase is coming up.
As you could probably already tell, during the last 2 months I have just been allowing my body to recover and relax. Just to enjoy life. Since last week, I entered a new phase.
I’m getting up ‘early’ in the morning and going to bed ‘early’ in the evening as well. I sleep better. Both my mental and physical energy have increased. I have picked up sports. At first I thought of starting very slowly with fitness and so on. But then I thought, the heck with it and since I was already playing a lot of golf, I just started to play squash directly from scratch. I’ve played it twice now and I must say it went remarkably well. Yesterday I played with three women and I beat them all – I beat Sanne twice to be precise! Haha, I was very amused (they say they let me win, of course).
During the last months I spent much time on my website’s and since last week I got myself into a completely new project, for which I was contacted by a Dutch communication consultancy. Last week we signed the contracts.
And from next week onwards, classes are starting at Erasmus University in Rotterdam. I will follow a couple, in order to get back into the rhythm and to get used to long spans of concentration and deep thoughts.
All of this – normalized rhythm, sports, website’s, classes – contributes to my rehabilitation and resocialization. I aim to be close to functioning normally in September when the new academic year begins. We’ll see.

- Mare.
For all the Dutch : this week’s Mare (the spectator of Leiden University) features me in their front-page article. See http://www.leidenuniv.nl/mare

Almost back in business.

Love, Rogier

Dear Friends around the Globe,

Here’s just an email to say hello to you all and tell you how I’m doing. Through my blog on http://www.van-willigen.net, I like to take our communication to the next level and provide you with more of Rogier! The website now contains these Recovery mails, but also features some pictures of me (oh boy). I’m worn out by the chemotherapy, but : Thirteen chemo’s down, three to go. My tumor and me celebrated my birthday on November 4 in close harmony.

The whole sixteen yards
A couple of weeks ago my doctors decided that it would be best for me to go through a total of 16 instead of 12 treatments of chemotherapy, mainly because of the original size of the tumor and partly because “I’m enduring the treatment so well”. This decision has nothing to do with lack of progress of my treatment (which is good), but with optimizing chances of going through chemotherapy only once. I’m still getting chemo every two weeks.

A beat or two
The side-effects on my heart seemed to stabilize a little until three weeks ago, when I experienced some problems in the evening. Suddenly my heart rate went through the roof, I felt dizzy, my fingers and toes were tingling and I felt really uncomfortable and completely restless. Two roommates were with me and since my situation didn’t improve, we decided to call an ambulance. The medics diagnosed me with hyperventilation and could quite easily get me over that in 30 minutes or so. What caused me to hyperventilate is unknown. My hematologist doctor decided to make an appointment for me with a cardiologist to make sure my heart is good condition. However, her opinion is still that there is no reason to expect serious problems with my heart – other than suffering from side-effects. This was a very scary experience.

There was one funny moment, when the medics arrived and asked me “whether I was perhaps taking any medicine at present”. I was lying on my bed and just pointed to the floor right next to it, which looks like a small pharmacy. We asked them whether we could give them a refill of any of their supplies.

As a result of the chemotherapy, the veins in my arms are completely hard. This is the case already for some months and it is quite amazing veins can get that hard. My doctor calls them ‘cables of steel’ and indeed, they feel more like tendons (“pezen”) than veins. I’m applying a salve daily with limited success. I believe it is the formation of scar tissue in the veins, where the concentration of cytostatica is the highest. I can imagine my heart objecting a little when the same medicine, though slightly diluted, flow through the chambers of my heart.

Psychological experiment
I promised to keep you informed on Mind vs Body. Well, Conditioning is on the upper hand. My vomiting became so severe lately during the administration of chemotherapy that my doctors decided to give me stronger anti-nausea drugs (to get me a little high and stop vomiting). Even these stronger drugs didn’t work enough unfortunately, so that the last time I got even stronger drugs. This is of course the traditional Dutch approach to problems.
These last medicine made me sleep for some 20 minutes during the administration of chemotherapy, which I find remarkable. I still vomited three times… but hey, that’s already a lot less than before haha .

Trivia…
- I’ve spent a weekend in the outskirts of the Netherlands with 11 friends. It was really nice to see them all and have some fun. When you’re ill for a longer period, you don’t get to see your friends in the same situations as you normally do. This weekend was exactly such an occasion – only this time I was present. Some (censored) pictures on the web.
- My hair is growing again. Unmistakably, my hair is growing. It is not curly and the density of hairs (hairs.cm-2) is much less, but nonetheless.
- Although I had to stop all academic and advisory work, I still manage to keep attending nearly all classes of my Spanish and golf courses!
- Tomorrow I’m going to a fantastic spa-resort with Sanne – it’s my birthday present! We’re getting a ‘Feel Good-treatment’ (I’ll be a tough case for them) and best of all, we’re going to be completely packed in cacao!

If all goes well, my final treatment of chemotherapy will be on January 14, which is only six weeks down the road. Trust me, I’m counting the days.

Love, Rogier

Dear Friends around the Globe,

Certainly I hope it will not become some form of habit to start these emails every time with excuses about me not answering personal emails from you guys… I’ll get in touch with a lot of you soon! And I really appreciate getting all your emails (and also thanks for the books and comics and chocolate and DVD’s from opera’s and National Geographics and computer games and cards and letters and more…).

Recap of this email
I am doing nothing all day except fighting tumors and I am pretty good at it! I have received eight doses of chemotherapy by now and will have to face4 or 8 doses more, followed by one month of radiotherapy. We’re hanging in there!

Medical situation
Last Friday I got the results of a CT-scan made two weeks earlier and the results were very very good!
– Compared to the information from the CT-scan made before the treatment, the tumor is approximately 5 times smaller! (the tumor now is approximately 20% of it’s original size). The stunning dimensions of the original tumor were some 16 cm by 13 cm by 13 cm which is now reduced to some 10 cm by 8.5 cm by 6.5 (of course, a tumor is not geometrically shaped, but yes : this means the original tumor was over 2 liters in volume!). Of what is left now, quite some part is scar-tissue (littekenweefsel) which will remain anyway and is completely harmless. My doctor was very enthusiastic about this results, calling it ‘perfect’ and ‘a textbook-example’. Oh yeah!
- Furthermore, the last remaining water in the interpleural space in my lower right lung has gone and my right lung has re-expanded itself perfectly. That my lung can re-expand like that is an amazing thing in itself.
- Finally, this scan showed that virtually all water from is removed from the sack around my heart. Do I need to mention I am very excited with these results?

The 14-day cycle and preferences regarding side effects
Although I’m doing okay, the situation has changed a little since my last email. At that time my doctor said that “I was walking through” the first two chemo’s way too easily and that the treatment would become more rough.
Well, by now we’ve hit that stage .
My life is organized in a 14-day cycle. The ‘chemo’ makes me pretty sick and fills me with nausea for the first couple of days. Right after chemotherapy I’m quite devastated and people are very nice to me. Last chemotherapy for instance, my mother gave me “total loss”-candies and my girlfriend remarked how great I now match the color of my walls (which is yellow). Recovery of the chemo takes a little longer than at first, but in the ’second week’ I’m still able to feel good and do quite some fun things. In the first week, my ‘core business’ is going out for lunch with friends, while in the second week I can be more active. I’m still eating very well.
The most notorious thing that has happened since my last email was that somewhere near my second and fourth chemotherapy I experienced some ‘problems’ with my heart, which both lasted only for an hour or two, but which did not make me feel very comfortable. It’s something with a high and slightly abnormal heart-rhythm. My doctor says this can be part of the possible side-effects. I decided to ’slow down’ quite significantly (can youimagine?) and avoid situations where I feel such a thing is more likely to happen and that was a good move. I haven’t experienced such a thing since (8+ weeks ago) and I also feel that resting and not making a lot of appointments speed up my recovery. At this moment, from time to time I can still ‘feel’ my heart and I sleep not to well because of that. On the other hand, knowing that those more serious situations are history, makes me relax and realize it’s only part of the happy side effects chemotherapy offers.
And there’s no alarm ringing for me in the morning!
I guess this heart-rhythm thing probably also had to do with a more general mental acceptance of the situation that I am ill for now and need to rest.
I’m just not used to being ill : Sanne told me that she can remember me only once being ill in the last 5 years… At least I’m catching up with something

Pavlov’s dog
I feel like that critter, because I feel I too am prone to conditioning.
Because I know what’s going to happen next when going to the hospital every two weeks, I already start feeling bad. And since six weeks or so ago, I practically already have to vomit BEFORE getting the chemotherapy.
Ironically enough, this especially starts when I’m being administered the anti-nausea medicine. I can trick my body a little with eating strong eucalyptus candies and sniffing nice lemon-napkins, but I’m afraid my body is quite a good learning entity. I’ll keep you posted on this psychological experiment.
Furthermore, when someone mentions the name of one of the cytostatica or something else which make me think of the treatment, no matter what time or situation, I instantly start shivering and feel the urge to vomit. I’m Pavlov’s dog! Bark, bark!

Fun things!
I am making sure that I rest enough, but it’s important to do some fun things as well! So I started following another course at the University in linear algebra (can anyone possibly imagine a more fun thing?) and lately I started following a course in Spanish at the University as well (hablas Español?). Next week, a course in golf is starting which I will follow with two ‘roommates’. And finally, I’m spending some time on my websites.
I’m still living in my “student-house” in the center of Leiden, which is great because it allows me to have a lot of nice brunches, lunches and dinners with friends in the city when I feel like it. Furthermore, I have great roommates, family and a superb girlfriend who take care of me. Thank God for them.

Oh, and I’m pretty bald by now. Nothing political though .

Love,

Rogier