Birdsperch: June 2008

28 June 2008

The last of the locks

It has been a very busy 1 days and I will need at least 3 to recuperate. But yesterday morning I left for the Ardennes in Belgium to meet with my co-workers from PwC for a team-building event. I had almost been admitted to the hospital around this time last year, so I was in no shape to attend the company outing. This year I thought it would be a good opportunity to get to new collegues and make sure that I keep iknow n touch with work. It was a marathon getting there as the drive alone was pretty much killing. After a 4 hour drive including a 15 minute stop, I was pretty much ready for a lie down by the time I got there. I participated where possible with my team but ended up watching for the better part of the afternoon. Later on we went to the house in which the gang was going to sleep. We barbequed and afterwards I left for André and Kamila's, my nephew and his girlfriend to spend the night there.'s. That was another hour drive. I slept in until 11.15 which really suprised me. It's been a long time since I slept in that late. I must have been really tired. Unfortunately that gave me little time there as I had an appointment in Amsterdam at 16.00 to have my hair cut. I picked up Kiara first and we went there together. The last of the dreadlocks were cut out, and now, I have a short Afro hair style. I was OK with how it looked. I had already shed my tears on Thursday night. Aldith, Kiara and Marcus had been so sweet to me that I got over that easily. So...now I am ready for radiation therapy. When I got home this afternoon, I read that I am actually starting on monday. I am apprehensive, but also very happy that something is happening to the not so modest bump on my head.

26 June 2008

I have cut my hair off

It was bound to happen sooner or later. I have cut my hair off, or at least half of it. Within 2 weeks time I will be starting radiation therapy on my head. It will lead to hairloss without a doubt. We stopped halfway as Aldith and Kiara said it didn't look too bad with the front off and the back still in place. So I have promised myself to wait until Saturday when I have my appointment at the hair dresser's to decide if I will cut off the back too. As you can see, I have categorized the hair bunches in front, back and middel, having removed row by row. You see; Meghan Lynch, a young lady that makes dreadlocks, has assured me that she can put them back in later when my hair starts to grow again. So I am keeping them safely, for later. Bye bye hairdo. That was 4 years hard work. It is at times like this that I wonder how much more will be taken away from me.

25 June 2008

Knowledge makes us get well

I will start this post by reciting VUMC's new slogan "Kennis maakt ons beter" which means that knowledge makes us beter (or get well). This has been a week from Hell. It has been extremely hard work trying to get things sorted out regarding my treatment. I had talks with Baayen the neurosurgeon at the VUMC and last week I spoke to Van Triest in the AVL about the radio therapy. It has been a major task to get the necessary information regarding my head. As you all know, I wasn't too happy about the decision to start with radio therapy as surgery to me seemed like the best option for the tumor on my head. After a 45 minute wait, Dr. Baayen finally saw us and took the necessary time to explain what the complications were. It turn out that the fear of infections was a secondary complication. The trouble is that the tumour is growing into a major artery in my head. (I believe it is the jugular artery, which a main feed to the entire brain). If this artery hemorraghes in the frontal part, it would lead to paralysis on one side of my body. If it hemorrages on the back part, it could lead to instant death. These factors have lead to the decision to not operate. On top of that, the skin has become so thin on top that if they were to operate me, they would not be able to close it up again. The skin was actually so thin that the doctor begged me to cancel my trip to Jamaica to start radiation therapy immediately. I was still debating what to do when Marcus bribed me that if I would go to Jamaica later, he would join me. So this is where we are at. I have cancelled my trip and will be starting approximately 6 weeks of radiation therapy. It was truely heartbreaking to tell Kiara that the trip was cancelled. Luckily she will be spend time with her father.

My meeting with Gerritsen was far from satisfactory. He acknowledge a few of the mistakes but once again was badly informed about my case. Lips seemed to be used as the scapegoat which was certainly not my intention. All in all, Gerritsen has offered to put together a new team of doctors. I have left this option open but have also started to work on an alternative in which Dr Luykx has played a significant role. She is an excellent doctor who certainly knows her stuff. Besides having my radiation therapy in the AVL I have already got my first appointment there for follow up in the other fields. In other words...I am changing hospitals and have chosen for a more personal approach.

Aside from all this information there has also been a lot going on domestically. Life is very busy for me as there is so much to arrange and manage around my illness and at home that I seem more occupied than when I was still working full-time. Life is very emotionally charged and intense right now and people don't understand that there is no time to get bored. It was time for a break, so last night I told Marcus to grab the fishing rods, I went shopping and we drove out to the lakes in Almere to do some fishing and Bar-B-Qing. It was nice to get away from the city noise and enjoy the peace and quiet of an summer evening in the nature. The kids enjoyed themselves, and Marcus and I, only for a wee while, were able to get things off our minds.

18 June 2008

Hanging low

I'm hanging low for a few days as I am frantically trying to get my treatment and those treating me adjusted. This involves a plentitude of doctor's meetings. As for the head matter, it does not look too good. Time to move forward full-force.

17 June 2008

Trappenberg sponsored

After a weekend of treatment and an extra day of nerve-wracking hospital visits I closed yesterday off with a visit to De Vrienden van de Trappenberg in order to hand over the procedes from my sponsored walk. Thank you everybody who supported me. Most of the money has already been received by me, but I believe that I have been moving too quickly for some of you. Do know that your donation will still be welcome and that I have an agreement with the Trappenberg to donate the remainder a little later. As it is I have already donated € 520,- which will infact be used for internet and computer facilities in the Trappenberg, which was my request as I experienced that internet is a perfect way to keep in touch with home and friends. I was late arriving at the Trappenberg, due to heavy traffic and late doctors, but I managed to walk into the building at about 8 o'clock instead of 19.45. It was a very warm welcome. After telling them a little bit about my story I handed over the money in an enveloppe. I was given a bouquet and we shook hands. It was a real thrill doing so and for just a small moment I was able to use my public speaking skills again. I still had the knack!

As far as my doctor's visits go, I will elaborate on that a little later. Today will be dedicated to physical therapy and work, this time from home regarding my radioactiveness.

12 June 2008

Killing the cancer part IV

It's time for my Iodine treatment again. I will be admitted to the hospital again tomorrow for my 4th treatment with radioactive Iodine. This treatment is supposed to gradually deminish the amount of cancer cells, hopefully leaving 0 cancer cells in the body. A theoretical amount as thyroid cancer never leaves the body entirely. The last readings were not good. Instead of decreasing the amount of cells increased, boosting my quest for a surgeon brave enough to operate me. The VU hospital may be the most advanced in the country, but regarding attitude, communication and dealing with cancer patients, they have a lot to learn. Frustration about the way my case is being approached brought me back to Dr. Luykx's office yesterday. My mother and Marcus came along and we had a very good converstation about the procedures regarding my treatment the past year. She is convinced that changing hospitals would do me good. A more aggressive approach would suit me better which could involve a possible operation. The doctor stipulated that I am much too young, too strong, and too willing to fight to be satisfied with a treatment according to a protocol designed for elderly people. This form of cancer in this stage is usually only seen in elderly people, which means that they have to adjust my treatment to that of a 40 year old mother. As far as prognoses go, she told me that this is not something to worry about yet, as I am infact doing very well. She was impressed with the 4 hours a week that I am spending at work. She made many more statements which left me full of hope and willingness to carry on my cruisade for life. I feel very relieved. Anyway, tomorrow I'm back in the hospital and in 2 week time I will be in Jamaica, not worrying my bumpy head, none. You can reach me at the hospital by calling my cell phone. I should be out by Sunday.
This time we have adjusted the procedure beforehand. I only stopped using my medication 2 weeks ago and I have had 2 Thyrogen injections to boost my TSH levels. This is supposed to enhance the Iodine uptake. It is supposed to leave me less tired afterwards than when I stop with the Thyrax earlier. How odd! Years ago I had a job interview at Genzyme. I was allergic to something in the air and ended up coughing throughout the entire meeting. They did not hire me. I always thought their line of work was rather scary and now, I am taking their medicines. I will be back on here after the weekend.

09 June 2008

Chillin' out

Today it was time to chill out and take it easy. I slept in first and we stayed around the house all morning and the beginning of the afternoon. In the afternoon we went for a small walk on the heath, nearby. I'm not too troubled about 3 kms anymore.

Kiara and Marcus climbed in trees. Well, a man's gotta do what a man's gotta do.

Look at Kiara looking like Pinoccio! LOL ;-)

It was a lovely day which I closed off with going to the movie with Kiara and her friend Jermaine.

08 June 2008

A night at Blijburg

After visiting my God son Valentijn, Marcus, Kiara and I went to a party at Blijburg in Amsterdam. It wasn't exactly my kinda place, as I was struck by the superficiality of the summer guests, a hip scene which I escaped years ago.

I suppose that people who are working crazy hours every day need to find some kind of a release which in this case results in a post-modernistic hippie get together. We had fun though! I made lots of photographs which you can check out at WAYN and Kiara played on the trampoline. It felt like a party where Kiara's father could be at. And low and behold, in walked his whole entourage. It was fun for Kiara to be at a party with both of us present. Marcus grabbed the mic and sang some of his Reggae songs.

06 June 2008

Day 4 of the hike and the finish

The final evening had arrived. I was happy that this would be the end of it. We had 2 different options. One was so start in the same place as where we would finish, which would mean that we would have to walk 7 kms. The other one was to start midway and get someone to drive me to and fro afterward, which meant that we would have to walk 5 kms.

Marcus kindly offered to drive us so we started at location 2.

The walk was very tiring as this evening the route was through the town's centre. We therefor had to walk the whole route on tarmac. This I did feel in my back. After a while the pain died down and a pain in my knee took over.

Usually, it is easier to walk the last evening as one can walk to the beat of the music. Unfortunately, our position in the cue was not favorable this year. We had to walk the hike on Smurf power, which proved to be pretty potent, leaving us with a school prize for the most original theme. Even the teachers and the principal were blue, and thus I too turned bluefaced.

Each night seems to be easier, so I came through alright. Kiara too did fantastic and it was great to get our medals. But as you know, things are never normal at the Kometenstraat number 1. Bird had to be different, and got a tooth ache. The tooth ache reached a climax and before I knew it, I was at the Dentist's getting rootcanal. The evening came to a hault at 01.00 am. Time to sleep. Unfortunately my camera was not sufficiently loaded so I don't have a film taken at the venue. Instead I filmed myself after the dentist's. Are tooth ache and noise polution connected by the way? I will be getting back to you on the sponsorship by email.

Made it!

More news in the morning.

Check out the teaser.

05 June 2008

Matters of the head

Since Wednesday, my phone conversation with Lips has been bothering me severly. All of a sudden Lips is in a rush to get me treatment. The bump on my head has grown since Christmas. I estimate that it is now 5 x 5 cm's. Initially the Neurosurgeon had told me that that area of the brain would only affect my balance. Right now they are talking about severe damage like paralysis, motoric matters, and seizures. They want to give me radiation therapy which intuitively does not feel like the right choice. They are worried about infections if they do operate. I can't help feeling that if they had not procrastinated that long, that the option of an operation last February would have been a better choice. I have now finally gotten an appointment with Luyx. I intend to change hospitals soon, but I want to make sure that she doesn't have better ideas. Also I want to see if she can coordinate my care. Ik need someone who is on top of things and who is smart enough to look at the periferal matters. I am currently waiting to make new decisions regarding my health, as I do not plan to give up now, which seems to be the general undertone in the VU Hospital. I need people believe in my ability to recover rather than giving up on my case. More news on this matter next week.

If I had a hammer

I'd hammer in the morning

I'd hammer in the evening

All over this land

I'd hammer out danger

I'd hammer out a warning

I'd hammer out love between my brothers and my sisters

All over this land

Trini Lopez

04 June 2008

Day 3 of the hike

It is day 3 now and I have just finished the 3rd part of the hike bringing me up to a total of 15 km already. We all know that it is much more already but this is what the officials say. It was a badly organised day and the groups started to mix which was much less fun to walk. We just stuck by our pace and gradually made it to the finish. I have noticed how people just can not get their brains around the fact that I use my wheelchair at times but that I can also do this. All I can say is that it would certainly not be wise to do this too often. As my physical therapist says, scoring at this level can be compared to top sporting. Basically, I can view my medal as an Olympic medal. I have always wanted to have the capacity to be an athleet. What a suprising way to achieve that! What I feel mostly is the acid in my thighs. That is a good sign as it means that my scaffolding in my back is holding up pretty well. Once more I have uploaded a little film for you guys. As you can see I am getting more and more tired, so I am happy to be doing the last lap tomorrow. Today was easier than yesterday. Tomorrow there will also be drum and bugle corps walking the hike. Somehow the rythm of the music makes it easier to walk. I should manage to finish all 4 laps, unless I have problems tomorrow. I will keep you posted. Incidently....sponsors are still welcome.

See you tomorrow!

03 June 2008

Day 2 of the hike

The second day of hike has passed. I made it to the finish once again! Today was easier than yesterday as we walked a path that was much more even. I noticed that I used the muscles in my legs much more as the aches and pains are right there in my upper thighs. I walked with Mieke at the back end of Kiara's school group, ensuring that there were no escapees.

Marcus and Collin came along to support us, and Jermaine joined our school today.
Well, I do feel rather triumphant. Today was probably the hardest day for me as I went to the office to work today and had another 2 meetings afterwards, allowing me no time to rest. An order- in dinner did help. Check out this footage! And some more. If I recover well tonight I will be back on the road tomorrow. New sponsors are welcome, of course. As for a comparison to when I was healthy...I think my body feels like it is walking 20 kms each night.

While we were walking Lips called my home to let me know that they don't want to do the surgery, but prefer radiation therapy. I don't know why yet, but by now I am sure that I want a second opinion. I need to call him in the morning to find out what is going on. One thing is for sure. I am not planning anything before my trip to Jamaica.

02 June 2008

Day 1 of the hike

Let me start by saying that I am overwhelmed by the response regarding the sponsorship. Tonight was the first part of a sequence of 4 evenings. I am therefore most pleased that my personal Via Dolorosa will pay off in the end. Thank you for your support!

The first lap is behind us and guess what I made it! It was actually very tough as I had pain varying from an aching toe to a throbbing molar. I suppose that neurologically all of this makes sense. The first 4 kms were OK but the last one was the hardest. I was happy to be able to make my way back home.

Half way through the hike we stopped for refreshments near 't bluk, just before the last part on the heath. Suddenly a thunder storm emerged and we were summoned by the Police to go back the same way we came totalling 5 kms. The mind is a wonderful instrument. Who would have thought I would be in this position a year ago! I was knackered but I already seem to be recovering. Tomorrow should be the hardest day as I will be working beforehand. Getting to and from the starting area was really easy with my scootmobile. Normally I would have had to walk quite a way to the cars. So, here's a little biligual video fragment for all you supporters out there.