30 November 2007

Thyroglobulin up to 10.000

Since I have cancer I have felt that I have earned the right to cuss. I have always been strict about that with Kiara and pretty good about that myself but since the Cancer got into me I have been swearing it out regularly. When Kiara told me off, I told her I felt so bad...it was the disease making me do it. Recently, I've been doing much better.

Today, however, this picture has been on my mind. I just got back from my holidays and felt recharged and ready to go. This morning I visited Gerritsen's office for my regular check-up. I got there knowing I was to receive the results of the bloodtest from before my last Iodine treatment. I knew the count was probably up a bit as the previous Iodine treatment had worn off, which gives the cells a chance to multiply again. We are talking about the period between 18 september and 15 oktober. I had expected to get a reading of 3500 at the most, so I was totally alarmed to hear that it had gone up to 10.000.

Though Geritssen insured me that Lips said this was normal, I also read between the lines when he said he checked with Lips to find out why my count had gone up. He seemed perfectly relaxed about this, but as my consultation time was much shorter than normally and as he seemed to want to round it off, it just felt like really bad news.

I have to process this first. More was said though. The spot on my head is worrying. They are thinking about radiation therapy on my head. I was told by Wuisman earlier this year that he preferred to operate my skull and that that was a perfectly routine procedure. It scared me at the time, but I have changed my mind and would actually prefer it to radiation therapy on my head. Gerritsen does not agree with Wuisman, he is afraid of the neurological consequences. He told me they would be making a hole in my skull and replacing the bone with a plate. I insisted that that was no difference to the porous substance that I have there at the moment. The thought of bumping my head is disgusting. I literally see pictures of smashed skull forced into my brain. (Excuse my graphic language, but I just want to explain). The only good thing about not going into surgery is that the bone might replace itself. Somehow a clear removal of all of the cancer cells appeals to me more. We will discuss what to do after my next MRI scan.

In the meantime we have taken another sample of blood to see what the last treatment has done. It will take another 4 odd weeks until I have the results.
It is not a procedure that takes 4 weeks. They only do the lab work once a month. That drives me absolutely crazy. All in all...the doctor has assured me that my great recovery is a sign that all is well. I made sure to tell him that my recovery up to now has been largely orthopedic and that the first time when I came in, nobody could tell that I was sick. I do not trust my looks at all. I also do not trust how I feel, at all. He agreed that my thinking made sense.

We also looked at the Iodine scan. The uptake was great. I was not there long enough to study the difference between the first time and the second time.

It seemed to me that the uptake in my back and hips was a lot less than the first time (a sign that there are less cancer cells there). The head seemed the same and my rib...I don't know...that did not look too good to me. The areas that I still feel are the head, my rib, and my pelvic bone. I trust my instinct that these are the areas to watch.

Later on that day a small miracle happened which made me feel good. It is a private miracle that I might share with you in the future. If there is anything such as mystical forces...then I am sure I am being watched over. Or is this just me trying to hold on to my regular optimism?





'Sometimes I think that I had already lived my life to the fullest and that God made a mistake and thought it was my time'.

Me, earlier this week

26 November 2007

Wanted, dead or alive!


















We are back home now. We actually made it there and back again. It was the trip that I wanted and I was going to make it, dead or alive.

Travel is such a significant part of my life. Having grown up moving from country to country that somehow gets into one's blood and life without it seems empty. It was of great importance to me to know that I was able to do this again. Well, we made it! In retrospect I did really well as I felt hardly any restrictions when I was in the US. We had a great time seeing Jocelyn, Matt and little Zara, shopping, going for pedicures, celebrating Thanksgiving and even seeing some of the sights. I had not expected to be able to do that, but I decided to drive around for Kiara and show her things from the car. Too bad I did not have my Parking pass yet because that would have gotten me really close to the monuments. By the way I have been granted the pass for a year. They are supposed to issue them for 5 years....but at least that's something!

When I got back from the US my friends had been in action. Tineke (alias the White Witch) and her boyfriend Henk had painted my livingroom. As you can see, it looks fabulous! And for the first time since I live in this home, it feels like my place.
Jacqueline had worked on my closet in my bedroom which looked meticulous.
Aldith and Leon had moved in the beautiful white couch which Talitha gave me after moving in with her boyfriend. So now I am slowly starting to feel at home in my own house.
This Spring I will make a new attempt at re-mortgaging the house in order to get some extra cash to fix the windows, the outdoor painting and a few other things. These matters are very difficult if you are a cancer patient. Only this week I reallized that moving countries would be a problem as far as medical insurance is concerned. It was Micheal Moore's 'Sicko' which I watched on the plane (must see that one) that triggered that thought. I would have to continue my current insurance. In that sense, I guesse I will not get a break. But I have learnt to appreciate everything that I do have.
For instance: Kiara got her report card today. She has done extremely well this first quarter scoring no less than a 7, and even getting a 9,5 for Geometry. Little miracles are beautiful. I had expected her to do worse for sure!
No, I get by with a little help from my friends
Mm, I get high with a little help from my friends
Mm, gonna try with a little help from my friends
Beatles

23 November 2007

Thanksgiving

Thanksgiving in the US! Wow! Who would have thought that! Well there is certainly a lot to give thanks for. The mere fact that we made it here in good health and were able to spend the day with a wonderful family is too good to be true.

Kiara and Megan finally got to meet each other. Megan had heard that Kiara was going to visit and started to Skype Kiara 6 weeks ago. The greeting was great, first they exchanged gifts and for the rest of the day they played together. The family we spent the day with were the Rock's (Matt's family). It's a nice way to end our holiday. Tomorrow we fly back to Holland.

It's been very good to be away for a little while. Kiara had a wonderful time as well. I am sure she will have problems adjusting again. She will certainly miss little Zara when we get back. Hurray for Skype, once again .That will keep her connected and thus I created a new citizen of the World. When I get back I will slowly start thinking about going back to work. I have agreed to re-acquaint with my co-workers at PwC in December.

Well, one more day to go! Apart from having a fantastic time visiting Jocelyn, Matt and the baby, it was also really nice to see Jocelyn's parents again!

We had dinner at their house last night and as usual it felt very familiar to be with them. After all I have known them since I was 9 years old too. The funny thing is that Kiara too felt totally at ease with them. It's interesting how you can pass these things on!

20 November 2007

Adapted sightseeing

Still having a great time in DC. I figured out that since Kiara was so small the last time we were here, I would at least try to go past a few of the sites in the Capital. Just so she could say she had been there. We drove around for ages because we kept thinking the parking spots were only for invalids. Kiara was quiet angry at the Dutch government for not issuing my pass sooner. It turned out that the invalid sign was only on the meters to ensure that they knew that they too had to pay for the spot. So far so good, as far communication goes. Luckily I was able to phone Jocelyn to find out the deal. We drove up to the White House and actually walked out in front. President Bush has put some kind of mesh work on his fence so it is and obstruction to the view. God knows why, no one could get through the fence anyhow. It seemed like the security around the building in much tighter than it used to be when Clinton was president. Gee, I wonder why?...

We also drove past the George Washington memorial and the Capitol. I wanted to get her to the Lincoln memorial as that spot is most significant to black Americans in Washington DC. When we were in Atlanta a few years ago, Kiara had learnt all about Martin Luther King. It would have been nice for her to stand on that spot. However...I was not able to find a parking spot near enough to be able to get back before rush hour. Unfortunately I would have been able to park right in front of it with an invalid parking card. What a bummer! I guess I will have to come back later. The nice thing about Washington DC is that all the sites are pretty close together. There was a time when I walked all of it! That seems really strange now. Anyway I manage to find my way around the place. I figure that's not too bad!


Last night Jocelyn and Matt invited us to eat at the Palm Restaurant. Jocelyn has been working there for 13 years and is one of their managers. We had a great dinner! You should go there if you ever visit DC. The Palm restaurant is a celebrity hot-spot. There are cartoons of lot's of famous people on the wall. The Palm NY was around in the 1930's during the depression. The building was situated next to the newspaper. The cartoonists would pay for their meals by drawing. The Palm is a chain throughout America now.

It's funny! I had met Jocelyn at the restaurant before, but I had never eaten there before. We had great meal. We had shrimp, swordfish, string beans, and Kiara had a great spaghetti. Even little Zara came out with us!






You gotta remember, you dont have to be afraid
You still have the freedom to learn, and say what you wanna say
You gotta remember, dont let em take away

The land we call the home of the brave

TOTO

18 November 2007

Beating the odds

It must have been in June or July that I told Jocelyn that my target was to visit her during Kiara's Spring holidays. Frankly, at the time I was not sure if I was going to survive this thing.
When I got home from being internalized at rehab, I noticed that Kiara was having trouble processing everything that had gone on. I was feeling pretty depressed too as I had just jumped off the merry-go-round and was being confronted with all the things I couldn't do anymore. Within 24 hours I decided that I would take on a project to prove to myself what I COULD do. I called the school to get permission to get Kiara out of school, then I called PwC to see how they felt about letting me go. At the word "go" I booked my flight to Washington DC. I had been dying to go there because my friend Jocelyn just had her baby. Jocelyn and I go back as far as fifth grade, which means that we have been friends for 30 years.
I was scared of the flight which was more than 8 hours. On top of that, I had to get to the Airport in time to get myself a good seat. Marcus brought us to the airport which was a great send off. I did not find a good seat by the way, but having grabbed all the cushions in sight I managed to get myself into a position that was nearly comfortable.

The flight was smooth and when we landed at Dulles Airport there was someone waiting with a wheelchair. He got me passed customs really fast but I had to wait for my bag for ages. I got out before Jocelyn had reached the airport, which proved handy because we were able to get right in the car. It felt really surreal to be here. I could not believe that I had made it across the Atlantic Ocean. I have managed to get back one of the most important aspects of my life. Travel! Boy don't I love to travel!

The next day we went shopping at a nearby mall. Jocelyn, Zara, Kiara and I hit the shops and had a meal. What made it possible was the fact that the mall had scooters which I could borrow. Here's little Zara sitting on a Fur Real Friends pony in the leopard outfit which we gave her.

A day later I went shopping with Kiara on my own. We had lunch out at the Cheesecake Factory. Funny, Kiara didn't want the Cheesecake! But she had crabcakes instead. I notice this trip is also doing her good. She is playing and laughing like a child again and she has started to talk about the things that are troubling her. That alone was reason enough to have her come on this trip with me.

As for me, being in a different environment is very refreshing. I am managing OK despite the pain in my back. Luckily the bed here is great.

Today we went to the play ground (Turtle Park) where Kiara once played when she was almost 4 years old. It is the same park where Jocelyn used to play as a child! It is very international and I ended up speaking to Dutch and

German people there. Always loved Washington DC... probably because so many people have a similar background to my own. In the afternoon I rested and Kiara had a great time with Matt.

More fun to come!

13 November 2007

Takin' a trip

This summer, when I was in the hospital, I was speaking to my friend Jocelyn on the phone. We decided that it would be a nice target if I managed to visit her in the Springtime. Whilst suggesting it, it seemed pretty impossible but I figured that such an incentive might get me back on my feet, so to speak.

7 weeks ago I decided I needed a break and most of all, so did Kiara. I called my travel agent and booked a ticket to Washington DC. There was alot to arrange to make this possible and the last couple of days I have of course not rested enough finishing the last tasks. Well I am almost off! I can't wait to be in another environment. The only problem is that the hospital has not sent me all the papers that I need. I am hoping they reach me by tomorrow. We don't want alarms going off at my (albeit little) radioactivity or my metal for that matter! I will be accompanied to the gate so I suppose that should help. It will be good to just rest and be with Kiara! Fortunately the Dollar is at an all-time low! America here I come! I can't believe I am doing this.

09 November 2007

Accepting accesories

You may wonder what I do on the days that I am not at the Trappenberg. Today for instance, I had to go to Naarden to the Harting Bank. That is not a Bank but a supplier of wheelchairs, scootmobiles etc.. In Holland it is possible to apply for such things through the municipality. A specialist is then sent by to evaluate the necessity. If the necessity is clear an application can be done. In order to do the application it is necessary that one tries out the different types of appliances.
In 1987 when I left school and studied physical therapy for a year, we visited the headquarters of the Harting Bank. At the time I still thought that it would be me helping others. Now, 20 years later it is the other way round. Strange how life changes things.

I tested the scootmobile and the wheelchair. A selection has been made for me. I will shortly be seen on a little gray scootmobile and a violet colored Quickie wheelchair. I was tired when I got home.

Just to humor you I have added the Permobil advertisement.

08 November 2007

Thrilled therapists

So, my interview on public television aired on Wednesday evening. (I see the link only works temporarily. To view the item go to www.uitzendinggemist.nl and find Sterren in de Zorg, then look for 7 november to play.) I managed to miss it as I had more important matters to tend to. Later that night I already received a few positive reactions. I also heard that they hadn't been able to resist the fact that I am Aldith's sister, a matter I will respond to.
The power of TV is incredible. As I went to rehab on Thursday, I had expected some comments from the workers there, but everybody and I mean everybody had seen the show. My intention to participate was to help the Trappenberg promote themselves on one hand and on the other hand I wanted to represent my fellow patients. Apparantly people were impressed about what I had said and explained. Whether the item made it clear what ergo therapists do is another matter. I know that I explained that too, but we can not have the patient explain this all if the presenter forgets to, right? So, for one day I was the TV star. I have been on TV before, but this time I had a message to bring. The medium is powerful as far as exposure goes. Talking to the other patients it was great to see that most people are not that superficial. Them being my peers made them think about the information given in the item. They were critical to the makers. Why is it that the media think that they have to cater to dummies. It is such an arrogant attitude. It also leads to lower quality standards.

05 November 2007

Thyroglobulin down from 3540 to 2660

The cancer cells are still diminishing. I got back the results from the blood test done on September the 18th which still shows a downward movement between August 2nd and September. (I did have a radiation therapy session on the 6th though. I therefore think the activity of the Iodine stopped before that). A new test was done on October 12th which will be compared to a test that will be done sometime near the end of November. Generally that test should take 4 weeks to be processed. Only then will I know what the last Iodine treatment has done. It is however clear that the uptake was successful. The areas in my backbone, leg and sacrum have clearly diminished. The area on my head isn't quite there yet. A decision might be made to turn to radiation therapy again. Until then we are monitoring that spot.

04 November 2007

The tables are turned!

He was born when I was 15 years old: My eldest nephew, André who also resembles me the most in character and looks, of the younger generation. It was then that I looked after him, bathed him, fed him etc. etc.. Whatever happened to the time? We are now 24 years ahead and look who's looking after whom!

The CD cupboards which Hugo had helped me put up, needed to be filled. Finally there was an opportunity to get rid of the pile of boxes which have been sitting in my bedroom for at least 3,5 years! I no longer have to stare at the words : Dijkstra Transport when I am bed. Some of you will understand the significance of that! Instead I have now transported the remains of Dijkstra to my attic to be emptied and disposed of, really soon. Anyway my CD's have found their way into the cupboards in alphabetical order. It is so nice to have access to all of them again! The problem with all these tasks is becoming apparent to me slowly. I realize that I can not do any of them without help. Only yesterday I got too enthusiastic and overloaded my back. I am still getting over it now.
It was great having André here with his girlfriend Kamila to just spend an ordinary afternoon together with us. Kiara was able to feel like a kid at home and found herself stuffed in a box!
It was a fun day.
Earlier on Kiara's friend Jermaine had visited too. Kiara had been complaining that she was not socializing enough with her friends. She is right! As I have been acting like a hermit, she has not managed to get around as much either.
Jermaine spent a good length of time at our house and this being a busy weekend, things felt remotely normal.




03 November 2007

TV Star

TV host Ivo Niehe has a son at the Trappenberg. To promote the rehab center, he spent a day at the center with Evert van Stokkum (my ergo therapist) to see what a typical day looked like for him. I was asked to be one of the patients whom they could film. My therapy session was therefore used to also benefit the programme. The programme called Stars in Health Care (Sterren in de Zorg) will air on Wednesday, November 7 at 19.25 on the Dutch public channel 1 (Tros). For those of you abroad, I will be adding a link to the online version right here (click on the orange button), once the programme has aired. I guess my rock-'n-roll years aren't over yet!

Small miracles do happen

Just this morning I was wondering how I was going to get those horrid Maple leaves out of my garden in time to be swept away by the machine that the town uses to clean the streets. I have had so many friends help out around the house that I am trying to find new resources. Just in case I turn for the worst later on. I know that I can ask for plenty of help, but I don't want to saturate their willingness. I have therefore been thinking that there must be a way that helps both myself and the other party. Each day as I walked over the leaves. I wondered how to solve the leaf-matter and I was aware of the fact that I had to hurry up before the seeds settle in the ground and cause yet another problem in the spring time. I brought Kiara to soccer this morning and she was just playing with her friend Dilara afterwards when the doorbell rang. "'heeft u een heitje voor een karweitje", they asked. Which is sort of like "Trick or treat" but just a little bit different. This is what Dutch kids ask when they want to do a small job for you in order to earn some money in return. Of course I had a job for them and this child labour inducer made sure she offered them good money if they did the job properly. Jack 'n Judd worked like real-life lumberjacks at getting my garden in shape. Hip hip hurray...small miracles do happen!

02 November 2007

Hillywood's Halloween

Commerce is always a good reason to adopt other nation's festivities.



Halloween is not a traditional Dutch feast, but somehow, in the past couple of years it seems to have been integrated into culture. Not that anyone knows about All Souls day, as Holland is by religion, a Calvinistic country. But of course our economy can flourish a little bit more on the extra sales.
I for instance boughtsome white make-up to fix Kiara's face. Anyway, somehow my daughter knows that it is Halloween and that that is a day to dress up and have fun. It is also the second consecutive year that the day care has thrown a party. Today was actually my day as I was free from therapy. I felt so free that I forgot to go to my general practitioner where they wanted to test my lungs, seeing as I have allergies.
Somehow the importance of these tests to me seem minimal in my new reality. I felt horrible to find out that I had kept them waiting. My short-term memory is a little bit scew-wiff too I assume.
This afternoon I had lunch with Selma an old co-worker with whom I have more in common than I ever imagined and rested in the afternoon. Kiara went to Sylvester's place after school so it felt great to have that time to myself.

Instead of resting I ended up doing some chores instead, so by the time they came here to get ready to go to the party I was pretty tired. We quickly fixed the kid's make-up and made our way over to Het Mirakel (the day care).

I have to say that they did a very nice job. The food was edible and looked decorative and with two fires and twenty-odd jacko-lanterns burning in the garden, the atmosphere was pretty exciting. At least for eight-year olds it was.

I was even happier to notice that it would not be necessary to cook a meal tonight. Kiara's belly was filled to the brim by the time we left there.


It was good being able to be there for Kiara. I had contemplated on asking someone to go there with her instead of me. Apart from almost being knocked over bij some kid, I did notice that functions like these are still very hard for me. A dinner with colleagues is do-able. But an evening with a lot of kids around and a hard stool to sit on, is painstaking (literally). Anyway...I made it again.