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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.

img_2834

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.

First scan

50% smaller!

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 §§

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Now that sounds weird, does it not? Let me elaborate and do a year in review. In two parts. This is part 1.

The year started with Lori and me coming back from a very good California trip. One of the high points being the last week at Riley’s in Bolinas. Such a great guy and such a great place.  Back in Holland I was just in time for new years drink with all my interactive and twitter friends at the “IPAN, 212 & IAB borrel”. I made a little video there:

Next up was me being part of the Twitter Bowlr Allstar team almost winning the Bowlr cup. We even made a viral video:

The day after Bowlr was also very significant. We had a workshop with the MoMo team to understand what we started and se what we could do with it. That day the first seeds for our own company SPRX were planted.

Also the first MoMo of the year was in January which again was sold out. We had a very impressive keynote by Joe Pine about the Multiverse. Watch it again and tell me in the comments if you can name all 8 worlds..

In the mean time I was stil working at RapidSugar doing a great project for Karwei among other things. Also I was editing and publishing the video interviews I made at the Le Web conference in Paris . It is a series called Learning from the Future. In the interviews I ask 3 questions: who the person is, what 3 changes/trends/movements they see the coming year and which of those is still present in 5 or 10 years. I had the opportunity to interview some really interesting people:

Some more:

Meanwhile at RapidSugar I was developing the idea of OpenProfile. OpenProfile is an VRM inspired identity service concept which in my view could be the next strategic scourse for a company like RapidSugar.

We did MoMo #5 in March about Mobile Banking. Again a full house.  We thought Finance and banking would be boring and not much people would show up. We were wrong 😎

Me & Dutchcowgirl Marjolijn

Me & Dutchcowgirl Marjolijn

April started with the NextWeb. A conference here in Amsterdam. I had the honor of accepting on behalf of DutchCowboys the award or best weblog. Dutchcowboys is an interactive marketing weblog I write for. At the event I hung out with my tweeps (friend from twitter) and also made two more Learning from the Future video’s:

Learning from the Future at the Next Web with Chris Saad
Learning from the Future with Nova Spivack

Somewhere in April I made my decision to leave RapidSugar and start SPRXmobile with Claire, Raimo and Yuri. SPRXmobile was to be a modern agency helping other companies get on the Mobile web. It was a big decision. I never started a company before or gave up a job. And I had such a great time at RapidSugar yet it was time to leave too.

Because I wasn’t doing anything big (NOT) we ended April by going to Spain and eating at El Bulli. A restaurant that has been nominated the best restaurant in the world 4 times. Yes it was expensive but soooooo worth it. Lori and I added a week to chill and relaxed over there.

Back home SPRX was launched with an amazing borrel with lots of people and with great warm weather. Click on the picture to see the video.

June was to be my last month at RapidSugar. It was also the month that SPRX got loads of business and that my personal favourtite momo happened with a keynote by Doc Searls.

And it was the month I found out I had cancer.

That was big.

It when i started this blog.

Looking back it still is so sureal. Most of it happend in one week. I summed it up before. Lori put it as follows:

My beloved husband went to the doctor yesterday morning because he had a cough that wouldn’t go away and was having trouble breathing. After being sent to the hospital for an X-Ray, CT Scan and bloodwork, turns out he has a tumor the size of two fists sitting between his lungs on top of his heart.

Now this is part of me. It is part of my journey.

§§ end of Part 1 §§

We just got back from the oncologist who told us that he wants to start watchful waiting. So for now its over. Next action is a CT scan in 3 months…. IN THREE MONTHS!!! What do I do now?

Here is the video I made just after we heard it.

We can hardly believe it and are in a bit of shock. A good one, but still in shock. So much has happened, so many good things and so many nasty things. And now they tell us that this part of the journey is over. That we can get out and stretch our legs. So weird. Tomorrow I will understand this better 😎 As usual it takes me a day to ‘get’ news.

Theo shrunk from 21 x 59 x 39 mm to 17 x 54 x 36 mm.

Here is the scan they did, you wont see much unless you are a radiologist but still it’s cool to see 😎

image002

For the fans here is the write up in Dutch from the radiologist:

CT Thorax

klinische informatie:
Follow-up mediastinaal seminoma +2 longafwijkingen.
Regressie?

CT-thorax:
CT scan van thorax volgens het longtumor protocol. Onderzoek vergeleken met 12/09/2008.

Bekende massa in het anterieure mediastinum heeft een AP-diameter 17 mm, voorheen 21 mm (serie 1 ima 37). In het coronale vlak meet de massa 36 x 54 mm, voorheen gemeten 59 x 39 mm (coronaal ima 30).
Lymfklier rechts paratracheaal 12 mm (ima 14), conform voorgaande twee scans. Verder mediastinaal meerdere opvallende klieren, qua korte as diameter niet pathologisch vergrote echter wel groter dan op voorgaande CT scan.
Gynaecomastie beiderzijds (ima 46) op voorgaande scan was hier slechts lichte aanzet toe zichtbaar.
De nodulaire verdichtingen zichtbaar op de fissuur major meten 7 respectievelijk 3 mm, voorheen 6 respectievelijk 2 mm, gezien meetfout beeld ongewijzigd.
Geringe atelectase van posterieur gelegen longdelen (ima 41 axiaal, 88 sagittaal).

Normaal beeld van bovenbuiksorganen.
Intacte ossale structuren.

Conclusie:
De massa in het anterieure mediastinum is kleiner dan op voorgaande scan.
Een lymfklier rechts paratracheaal met korte as diameter 12 mm, conform voorgaande scans.
Longlaesies in essentie ongewijzigd.
Gynaecomastie beiderzijds.

[try not to make your own conclusions from this if you don’t understand]

So he is still there. Also I still have some lesions on my lungs. My onc also mailed Einhorn inform and to make sure we are on the right track ( UPDATE: Einhorn agreed with the new path). The big journey is definitely not over. But the main first part is. In three months I’ll go back for another scan to see how it is then.

In the coming months I’ll work on getting myself back on the road. This afternoon I have an appointment with my GP for some minor ailments due to the chemo and to get some advice to efficiently get back on track.

Thanks for all your support. I really helps!

Today I had my CT scan. Last one was three months ago. With this new one they will be able to determine the difference between then and now. Based on that we know how bad its going with Theo.

If it is really bad for Theo its really good for me. It means I’ll start watchfull waiting where we going in to scheduled scans.

Of course I made some video too:

The biopsy they took the other week was inconclusive. They only found lung tissue. Originally in this scenario the onc wanted to now do a better biopsy under total anesthesia. But he won’t.

We haven’t done a CT scan for 3 months and he thinks it is worth it to wait with the second biopsy to see what the CT scan says. He has a feeling it might have shrunk and that all that has been showing up is scar tissue. I agree. Dr. Einhorn also said that we wouldn’t find anything.

The CT scan is planned for next week and the outcome will be know on Monday December 15th.

It all happened really fast today. Such a ‘big’ meeting which was over so quick. And has such a high impact. I dont know how I feel. But it really looks good as i have a bigger chance of not going back for more chemo and being home for x-mas. Watchful waiting might begin now.

Here is the short Seesmic video I made just after the news.

Call me dramatic, but tomorrow I might hear if the rest of my life starts again. Ok, it starts every day, yet I am nervous for the meeting tomorrow. My oncologist will tell me what they found in the broncoscopy. As said there are three outcomes:

  • nothing, so watchful waiting will start
  • something, so they will start a new chemo round (which I won’t do until after a thorough and smart second opinion)
  • inconclusive, so they will do a more invasive biopsy under total anesthesia (which I won’t do until after a thorough and smart second opinion)

verhagenIn the mean time its nice to know that the Dutch Secreatary of State Maxime Verhagen is in the know about my journey and hip to twitter. Yesterday there was a meeting with him and some twitterazi (Dutch article) and among lots of other things  this blog and my twittering was named as an example of open communication.

Today I had my bronchoscopy. Lori is in the States and Jos has been my nurse and driver. Because reading books is so boring we decided to record this part of my journey on video and put it online right away. The coolest thing was the we were even allowed to video during the actual procedure. Its short but way real!

We did it in Seesmic Mobile. Its an application on the N95 which records the video’s and uploads it right away to the Seesmic site and also posts it as a tweet. We made a total of 10  less then a minute videos:

  1. Getting ready for the Bronchoscopy (including 6 video replies)
  2. Pebbels is here too
  3. In the car (yes, we recorded everything)
  4. Arrived in the Hospital
  5. Getting the IV
  6. Broncoscopy in progress ( not safe for @michielb… i think..)
  7. In the recovery room (look mamma i am stoned! and the Insurance paid for it too)
  8. Its over
  9. On our way home
  10. On the couch

So how was the procedure?
Because I was busy with recording I was pretty distracted from the real deal. The nurses and the doctors also took their time to explain what they were going to do which was really good. I like to know what is going to happen. And they were letting us film the procedure which gave it all a good start.

First I got the IV which actually hardly hurt. Then the rolled me into the the room where the procedure was going to happen. Here most of the explanation was done. Then they numbed my throat by spraying some foul tasting chemicals into it. This took a bit. Its like the numbing chemical your dentist uses. They sprayed quite a bit in there. And made my throat feel numb. So it worked. They do this so subdue your gag reflex and coughing when the tube is put in.

Before they put the tube in I got the general ‘drowsiness’ drug. No anesthesia but something to make me stoned. This worked right away and so they started. There was the main specialist doing the deed, and an assisting doctor who was in training. Also there were two nurses helping out. I like attention.

They put a bit in my mouth and inserted the tube. This was uncomfortable but not that bad. I wasn’t too bothered with it. Yet it wasn’t fun too. And for the really bad bits the nurses held my hand, cheesy, but it helped. In all the tube was in me for 15 minutes. They took two biopsy’s. In the end it was getting pretty rough. The doctor asked me not the cough. Which wouldn’t have been a problem if he took the tube out of my throat and didn’t wiggle it so much. I was relieved when it was over.

After the procedure they rolled me and my bed into the recovery room where we chilled for an hour and went home

Before we went home I made an appointment with my onc for next Wednesday, December 3rd. That’s when I’ll hear what they found:

  • nothing, so watchful waiting will start
  • something, so they will start a new chemo round (which I won’t do until after a thorough and smart second opinion)
  • inconclusive, so they will do a more invasive biopsy under total anesthesia (which I won’t do until after a thorough and smart second opinion)

Now I have been home for 6 hours and am fine. A bit tired and a soar throat, but that’s all. I’ll be having diner with the neighbors.

Thanks again for all the love, comments and any other form of attention. It still is great and really helps me!