Hearing that you have cancer, that you have a tumor the size of two fists between your lungs is a big blow. A tremendous event which hit me hard. I will never forget that Wednesday June 4, 2008. That day is an HD movie in my brain. That Wednesday I found out something was wrong, but what exactly I didn’t know.
Was it malignant? Or was it Benign? And because I had just given up my job I didn’t have that security or income insurance either. At that moment I was happy I was already in smart action mode due to the previously hyper busy months. And my zen training helped me too. I was sad and I didn’t know what was to happen next. That was the only thing I did know, and what I worked with. I didn’t bother myself with possible paths and outcomes or even consider the idea of dying earlier then planned. I didn’t think about that because I didn’t know. I was just sad. very sad.
We found out on Wednesday and were due to fly out to Italy early in the morning the next day. After some deliberation and consulting the doctor (as well as the bride and groom) we decided to go. Next Monday would be biopsy day so in the mean time I could do what ever I wanted. On the plane to Italy I came up with the concept for this blog: “To inform, to Share and hopefully help a little”. That worked out pretty well.
We went to Italy for the wedding of Luca and Jeanine, Two long time friends of ours. The wedding and the hotel where we stayed were all in one beautiful location in Piedmont. The venue was a refurbished old villa run by an English Couple. It was very classy and cozy and a very nice way to get used to some very bad news. The prosecco helped, the attention and love from good friends helped… and the shopping at an Italian outlet mall helped (a lot…8-)
Back home the next mission was to find out what kind of cancer I had. After a couple of tests they finally knew what I had. A Mediastinal Germ Cell Tumor. It is a type of testicular cancer. Key difference is that my tumor is NOT down there but between my lungs. A very rare type. With this news the treatment plan was also known: CHEMO. I was to have 4 rounds of BEP chemo therapy. It would mean 6 days in the hospital and two weeks at home after which I would start the new round with another 6 day stay. It would be a 4 month trip and physically comparable to professional sports. Its a very heavy treatment. And I would lose my hair. The week leading up to this I had a BBQ with close friends and family.
I prepared well and was as ready I was going to be.
The day that I went in for my first chemo treatment started very well. We first went to the notary to officially sign the documents to start SPRXmobile, together with Claire, Raimo, and Yuri. That was a good distraction. And I was late for the hospital.
The hospital wasn’t fun. I had to have an IV in me at all times (which took them 3 tries before finding a good vein) and I shared a room with 3 others. I was ready to go at it but broke the third day after 2 nights of hardly sleeping, massive fluid retention and just dealing with all the crap form the previous weeks. You can only take so much.
What did help was all the attention I got. That was REALLY amazing. So many people reached out. My blog was becoming very popular and through twitter I was in continuous contact. I was always online. To keep track of all the love @michielb made me the River of Love where I could see what people were sending me. I also started to make a video diary. Here is the one where @vincente is showering me with gadets and does a good interview:
The video high light of the first hospital stay was catching mice on camera in the Hospital. I never heard anything about it from the hospital. I did mention it to the staff.
The best thing about staying in the Hospital was coming home. That was weird. Its hard to describe. I mostly remember being very deeply happy being home. And being tired. Very deeply tired. In the hospital you know that you are sick. Its a sick place. But at home you have your normal routines. I wasn’t sick there, or at least, I wasn’t used to being sick there.
Most fun moment was cutting my hair off. It was starting to fall out and it is better to cut off yourself then to wait for it to fall off. Enjoy the video:
During the last part of this first round I still had some energy and went to the Radiohead concert with @birdman and @vangeest. I enjoyed that. Before I went back in for round 2 @vincente did another video interview with me:
In the first round of Chemotherapy I learned some valuable things. Lori summed up our 9 key lessons:
Lesson 1: Sugar + Chemo= Nausea
Lesson 2: Visitors are great, in moderation
Lesson 3: For Maarten’s well being, Being connected is everything
Lesson 4: Take whatever medicine you can, when you can
Lesson 5: Take Control when you can by shaving your head
Lesson 6: Side effects suck!
Lesson 7: Ask for help/or learn how to accept it
Lesson 8 : Never underestimate the value of Bubby-love (our cat)
Lesson 9 : With our friends and family there to pull us through, we are guaranteed success
I’d now like to add a 10th one: Being Bald isn’t Ugly.
The second round in the hospital was better than the first one. I knew the routine, what to do and what to expect. And Lori got me the new iphone. That helped too!
After I got home after the second run and I gained some of my energy back we went for a long weekend to Delden, which is in the east of Holland where I grew up. I hadn’t been there for a long time. It was great visiting all the familiar places and eating great food.
The biggest news after round two, the half way mark is that my tumor had shrunkby almost 50%. That meant that the treatment was working.
The third round was ok. I had even more experience now. I just sat it out and made the most of it. The news that the treatment was working was helpful too. I was thinking about hospital business opportunities, learned to dance and had some good croissants.
Overall I was weaker too. That’s how it works. Looking back I see I blogged less and didn’t make as many videos. Highlights were following the Dutch women’s hockey at the Olympics, hearing that MoMo was doing an Auction for the dutch cancer fund and counting down the days remaining
And then it was over. Well, the treatments were over. I was a mess physically. The Monday after I came home MoMo was on. That was funny. The last momo was just before I found out. And now I was done and there was the next one.
They made a nice show of me not being there and the cancer fund made more then 1200 euros:
To celebrate that my chemo was over we invited everyone to join us at the Stout straat dinner. We made a merry party of 20, and had a great time. I was even hung over from the booze instead of the chemo!
The best decision this year was not only starting my own company. It was also getting a kitten.She was born on July 11th and on September 12th we brought her home. We named her Pebbels and she was (and still is) ADORABLE:
The chemo being over gave me a HUGE boost of energy. I used this at the PICNIC conference. For three days I just sat in the sun and enjoyed being back. And everybody was happy to see me back too. It was thrilling.
Now that the chemo was done we were anxious to know what was next. We knew that Theo shrunk and that it was going well. But we didn’t know how well. This took a while so we took our chances and flew to my Uncles house in the south of France. Lori and I both needed some chill time and to get away from it all. We did.
UPDATE: So what was good about this part cancer of the year?
- The clarity and focus the cancer gave me (it’s starting to disappear now)
- The BBQ with my parents and friends
- @josk always being there with Anita
- @michielb making the River of Love
- @markies organizing the twiterazi
- Marc & Sam always being there for the last hospital day
- @vincente with his video and gadgets (not many people know or see that he is SUCH a giver!)
- @all the twitterazi
- Ellen in DC’s comments
- Al the visitors in the hospital
- The nurses (especially the gadget nurse)
- Lori’s love & care
- The arrival of Pebbels
- Our trips to Italy, Delden and France (more about that later)
- All the good dinners I had
- That I have the best form of cancer you can get
- The reactions at Picnic
- Al the media attention me and my blog got
Is that enough?
§§ end of Part 2 §§