Lucky at last!

A few weeks ago I attended the opening of the Entrada project in Hilversum. This is a building complex where 4 appartment blocks are going to be errected on the terrain in front of the CS in Hilversum.
This building project seemed right up my stream as my gradually deteriorating physical condition is demanding a different, more adapted environment.


I have a limitted budget and at first it seemed that I wouldn't be able to afford a home in Hilversum. I was on orientation in Almere so that I could be closer to Marcus. Somehow, everything I looked for there was in the wrong sort of timing for me, because I want Kiara to stay in her primary school until the end. This project is interesting because the ground fee accumulates in 10 years time...meaning that the first couple of years living is inexpensive. The location is excellent, right in the middle of the town and adjacent to my current neighborhood. It is on block away from Aldith's home.



Many people came to see the project, and I was one of them. Getting into a crane that went up 10 flights, only days after my arm operation. I even made the newspaper...that's me in the crane. Ineke and Jermaine had come along on my little endeavor, and as you can see in the picture...I had my mind set on a very special appartment. To obtain an appartment I had to sign in for a lotery which was going to take place at a notary office sometime in April. I signed in for 18 of the 61 lots and then I fell ill again.
Time seemed to be speeding up things. My new handicap requires a new home and my biggest fear is to have to do with wat is assigned to me. I was already trying to find a way be given an exception.

Since I am back in the hospital it is of great concern to me where I am going to live. Kiara needs to be in a good place too. Yesterday morning while I was arranging my aids voor my current house, the real estate lady called me. The appartment that Ineke and I are pointing at has been assigned to me. I cried!

The Plan!

There is a plan and the plan is fine with me!

1. I get the bone treatment tomorrow right here at the VU hospital. This is an infusion with chemicals that allow the Calcium in my blood to form new bone.


2. In the meantime, I will be doing physical therapy to be able to manage at home.


3. Also, various aids are being arranged for my home-coming.


4. Friday 9 April, embolization of the tumor of S1 at the VU hospital. Follow-up with chemo (sorafenib).


5. Go home after recuperation.


6. Start rehab.


7. Have the iodine treatment.


8. If the embolization does not work I will be operated on to stablize my tailbone in order to reduce the pain.


9. If the embolization does work...we will see if we still need to stablize.


10. The heat therapy is off the plan for now, but still remains an option for the future.

I am satisfied!

Easter Holidays at VUMC

It's funny because I seem to spend a lot of time in the hospital during the holidays. I've been here on New Years Eve, Springbreak, The Dutch Queen Day, and this time round it was Easter. During a holiday a people miraculously recover. I find that an interesting concept. Suddenly about half of the beds are no longer occupied and the hospital turns into a serene and forgotten resort.

This being the case it was instantly benefitting to me as I had a large 4 person room all to myself. I claimed 2 cabinets and set up office with my 3 phones, computer, and camera. It has been a constant stream of visitors making me feel proud of my own capacity to make friends. The first round of visitors were my family of course. I believe it was Tuesday that everyone came by. Many tears were shed and everybody's reaction is different but equally painful.
Kiara was obviously my main concern, as my new handicap, which is litteraly that I am unable to walk and drive, has a direct influence on her life.
Progressive cancer has the characteristics of a monster that keeps attacking you. Each fase presenting a new challenge. It requires flexibility and stability of mind to turn each situation around to a workable solution.
This has been a week of acceptation, fine-tuning, mourning, but most of all programming my mind to meet the new standards of being.

































Up to now my survival technique has been to focus on a goal and to work hard to achieve it. This worked because my goals were in a mechanical field where there is a lot of space for personal progression. Now, however, the problem that has occurred is a disfunction in my electronics. (Neurology).
Chosing a goal and working hard to reach it will not yield any progression what so-ever.

It was painful to experience this this week. After the radiation therapy my doctors gave met the corticosteron called Dexamethason. When radiation therapy takes place, the cells break and fluid comes out. The immune system then sends extra liquid to flush it all out causing a temporary build up of pressure in the area called oedema. This pressure could have caused damage to my spinal cord which was adjacent to the tumour that was being treated. The steroids were supposed to decrease the amount of fluid in the area but also had a secondary effect on the tumour in my tail bone which is causing the problems in my leg.

After extensive testing of my abilities Dr. Hoefnagels had come to the conclusion that my muscle-power was still OK and that the damage to the nerve at this point is only to the sensitivity (I can't feel parts of my leg).
I was put on a strickt regime to train my muscles and me being the top sporter that I am I did just what the Dr. ordered. In the course of the week I started to walk again with walking aids and to sit up sraight again. Then everyday I started to feel a little bit more in my leg. On Thursday they stopped giving met the Dexamethason. Things are running really smoothly in this ward and I don't even feel the need to monitor the nurses when they bring my tablets.
On Saturday afternoon the Dr. and I had a plan to let me go away from the hospital for a few hours. Suddenly, on Friday, within an hour all the sensitivity that I had regained during the week disappeared. I had hoped to believe that my progression that week had come from my hard work but it turned out that it was 100% a chemical matter. This came as a terrible psychological blow which put me off track and made a whole week of extremely hard work seem like a waste of time. It was very painful and confronting, to learn that my survival skills which I have so succesfully applied the past years just weren't going to cut the deal.
I had to re-adjust. With many calls to loved ones, talks with doctors and nurses, I managed to regroup. A decission was made to take a smaller dosis of Dexamethason and to gradually build down the dose so I can get used to the change slowly instead of having to deal with the shock effect. I felt that hanging on to the medication that I fought the doctors about having to take it earlier in the week, just until I have a new plan, was more humane.
They agreed and I am now doing just that.

This Easter weekend I had 2 other goals. Leaving the hospital for a few hours on Saturday to have dinner at home with Marcus, and going out with Melvin and Marcus on Sunday. Both were huge challenges but we succeeded feeling rather chuffed with ourselves that we accomplished our survival trip.
Marcus is increadible, a constant haven and support. He is solid as a rock and gives me the confidence to go out there and face the World.

So, what's next? Right now we are waiting for information to make a treatment plan, a process in which I am personally involved. The object is to try to find a way to decrease the size of the tumour in my tailbone on S1.
There are 3 types of methodoligies that we are looking into.

1. Embolisation
2. Heat therapy
3. Surgery

Then there are other types of treatments that I have to think about with regards to my general state of health, like my radioactive Iodine treatment and bone strenghtning therapy.

Embolisation is stopping the blood supply to the tumour. This would theoretically suffocate the tumour and make it shrivel up and die in the course of a few weeks. The trouble is that it is hard to find the right arteries an the tumour will fight back trying to create new arteries. Taking my chemo should counter-act that.

Heat therapy would mean that they would electronically burn away tumour tissue...a dangerous enterprise as there are many things that they could accidentaly damage in the area and they woud be the same things which we are trying to protect.

Surgery would mean cutting away the tumour, with the same risks as with heat therapy.

And then there is the chronology. What can be done first to leave options for the future. For instance, if we do the heat therapy now, then I won't be able to have the surgery later.

We are taking our time to fix this puzzel and are making sure that the Top Dogs are getting all the necessary information at the moment. This is causing the long wait in the hospital.

Luckily Kiara is in good hands. She has been with Martin and is now with her best friend Martine. Kiara is increadible and has learnt the skills of dealing with disaster and disappointment. She has the composure of mountain basking in the sun, breathing in day tot day life like it's going out of fashion.
I am so extremely proud of her!

Tuesday arrived and it was D-day....what was to happen next. But Tuesday came and went and I still don't know if the doctors in Leiden dare to operate on me. Instead I went about planning other things like how am I going to go home, when will I have the bonetreatment, what can I request the Trappenberg, how can I adjust my house. I also made sure that I tested to see if I will be able to go up and down the stairs at home. This resulted in a extra strenuous session with the physical therapist leaving me knackered for the rest of the day. The verdict being....."Yes you can"!

I have to say that the strenght that I have to go through this is because of you. I couldn't have done this without your support, and there are a few names which I would like to mention here:
Mom, Dad, Kiara, Marcus, Sidney and Collin, My brother and sisters, Hugo, my neice and nephews, Mercedes, Jacqueline(my self selected sister), Tineke en Henk, Jocelyn, Matt and Zara, Helena, Goran and kids, Mieke and Ad, Annelies, Bart and Martine, Ineke, Sander, Myrugia and Jermaine, Saskia and Henk and the Kids, Gülzen, Myriam and Sylvester, Rachelle and Remco, Baby Valentine, Frank and Bernadette, Birgit and Peter, friends from Mandela, friends from PwC, Madelon and Robert, the Twitter posse, Tirza, Ronald de Moor, Martin and Vanessa, and many more of you....for making this medical production work.

More info

I am trying to keep up what is going on but it is too much. I have decided to post what I have and to carry on later in another post.

As I have redirected you to my Weblog for information, I want to try to write everything down so you can be informed. As you know I was suddenly admitted to the hospital on Sunday evening after spending a day in Sittard for Kiara’s last musical show. We arrived there in time and are trying to look for the backstage entrance, when I heard Melvin and Angélique call me. They both said, Aisha you are walking way too fast. I had no idea what suddenly I felt pain in my back. Angélique and I both jumped in the car and followed Melvin who brought Kiara to the backstage entrance. The company allowed me to walk through the backstage area to the front by the time I arrived there I was unable to walk. I remained throughout the show and left the building in a wheelchair. Angélique drove us back to Hilversum and on our way there I decided it was best if she brought me to the hospital. By that time I couldn't even stand. Luckily I was examined by a doctor very quickly, scans were made, and physical examination took place. Part of the examination was on the stretcher. While I lay there and suddenly noticed that my leg had no sensation left in it and it also couldn't lift it any more. I remember coming in with a full bladder and was unable to pee any more. At this time I believed I was paralysed on one side. So did the doctor who then ordered an ambulance and sent me to VU hospital in Amsterdam. Angélique and Kiara went to pick up mom who by that time was already on her way by train in Utrecht and then went to my home and Marcus was on his way to me on his motorcycle. He arrived in time to follow my ambulance to Amsterdam.

Amsterdam
it took hours before we were helped. I was checked by the neurologist assistant first. He had some x-rays made and then consulted his boss by 0330 in the morning they admitted me to neurology department telling me to expect paralysis. The nature my problems was caused by the explosive growth of a tumour in my tailbone. Marcus stayed with me until five in the morning and after two hours sleep I was woken up for a day continuous tests and check-ups. The doctor in charge told me that I was lucky not to be paralysed yet at this point they still could not see what the extent of damage was. You see, all the spreading of cancer in my body is to the bone. By Monday evening I knew that there were two tumours that required immediate attention. One on TH6 and one on S1, both of which were causing serious neurological problems. The last couple of weeks I had felt a lot of pain in my chest area. This pain apparently is caused by the tumour at the back of TH6 which is pressing against my spinal-cord. In S1 the already known tumour of about 4 cm in diameter had explosively grown more than doubled in size. This tumour is massive and has nested itself in the rear cavity of my stomach behind my intestines in front of my tailbone in area intricate mesh work of nerves and veins tendons and other important parts bodies computer. The nervus caudalis runs through this area and has function of stimulating the legs, bladder, womb, and intestines. This is nerve has been enclosed by its massive tumour and is causing me to paralyse. This is a situation in which most people are told that this is it. Prepare to not be able to be more, we cannot operate this area is too much of a risk. I was reminded that evening that I could be paralysed for ever in my right leg. On day three the doctor came to see me after many tests they believed that I had enough power in my legs to be able to learn to walk again even though sensation would not come back. They felt this because there has been some improvement since my admittance. I was to start strict regime of exercise but they made sure that I knew that I lost the sensation in my legs for ever.
I was told that it was important to have radiation therapy for TH6 as soon as possible and arrangements were made with AVL hospital where I was brought on Wednesday morning, once again by ambulance. Jacqueline was there to see me through it. We were there for about four hours. They marked my body simulator and their radiation therapy immediately. After that I was rushed back to VU hospital immediately Tineke joined me in the afternoon, this was one of the first times when they talked about the possibilities to take care of the tumour. Talks were going on with Leiden about a supernatural surgery. We were hoping that this dream team neurologists will be able to remove the tumour mass and free and nerve tissue. At the moment we are still waiting for answers

Well this is it for now... more later...

Storm clouds they gather

I promised to post about what is next. I have been told that I am not to expect to be able to feel the bottom of my leg and my foot anymore. This has great implications...I will again need to learn to walk, which should be possible as I still have the strength. This problem and several other potential problems like bladder retention etc. are being caused by a tumor on my tailbone which in a month's time has more than doubled in size. This tumor has has its maximum share of radiotherapy and therefore doctors are looking for another way to reduce the cancer mass. Each possible solution in very invasive and a possible threat as this area of the body is an meshwork of intricly woven arteries and nerves. It's a very specialistic field for neurosurgeons...they are looking into the possibility to operate on me. There are two more ways to try to treat this, heat therapy (burning) and embolization (blocking the bloodvessels).

My life as I know it is going to drastically change. Right now I am overwhelmed by the speed at which things have gone (Thyroglobulin count from 6K to 20K in one month). Obviously I am worried and wondering if I am counting my last days....My doctors don't seem to think so because they want me up and walking again and are working very hard to find the right solution for me. My attitude the last 3 years is paying off, herds and herds of doctors in 3 different hospitals are working together, listening to me and providing the best care. I am scared.

First thing in the morning is radiation therapy of TH6. In the course of the day I hope to hear what the dream team has decided.
Telling my Marcus, my family and friends about this hurts so much.

A turn for the worse

I have so much to catch up on like Kiara's last show....














but once again,my ...health is getting in the way. I was admitted to the VU hospital again last night with back problems. The problems are rather serious....two new tumors...one on th6 and one on S1 which is actually an old one but is giving severe problems right now. I am in the neurology department now in room 2b 44. For more info about visiting hours please go to www.vumc.nl. Tomorrow I will be reporting on what this means and what is going to happen next.

Yummy

I see that I have loads to catch up on. But just for now, I am off to turn into a chocolate wrap. Relax-day with Tineke!

Post Op

A week has passed since my operation and things are gradually picking up. I had great support from my family which is very helpful in these situations.
I suppose you can say that the operation was succesful despite the fact that my bone broke in two. So how are things now? My recovery is almost supernatural. I am already using my arm a little bit and the pain is not too bad. I do however get back aches, probably from compensating for my arm.
When they place the pin, theoretically, the cancer material is pushed down the inside of the bone to the bottom part where the pin ends. Radiation therapy is therefore necessary to prevent the cancer spreading to that area.
I will be going in to get beamed sometime next week. Then after that we are resuming the Iodine treatment to be on the safe side. I am giving the chemo a break and actually intend on firing my oncologist to subsequently try to get with the program in Leiden LUMC.

This whole thing has been really disturbing. I was just moving along when my last limb lost way. It worries me to think what is next.

As all this is happening I am still focussing on the future. I'm not through yet. I am trying to figure out what to do regarding my company (hoping to find a way to work on a more frequent basis) and am looking into where to live after this house. Because my career came to a screeching halt, it will be impossible to stay in this house for more than a year and a half or so. There are many new building projects around and I hope to take part in one. Figuring out what is best for myself and for Kiara is tough.

As for Kiara, she seems to have bleeped this operation away. When I told her about it all she said was 'you're turning into a robot'. Luckily she had her holidays while I was in the hospital. She stayed at Martin's and was able to get her mind off things. When she came back on Sunday night, I think it must have been as if nothing had happened.

It's one of those sleepless nights. I will post some pics in the morning.

I have my ways

Where I wasn't able to show you my own pictures this morning, sly old me managed to get ahold of this. I have added a few more of Aldith's visit. Marcus and Mom visited earlier today.

I expect to go home tomorrow.

The morning after

It is the morning after my operation. I am now the proud owner of a right-hand T2™ Proximal Humeral Nail, a fine addition to my Titanium collection (which for the record, I bequeath to my three sisters).

This is not my arm by the way!

This time things are going well despite a very long wait whilst checking in. It is really quiet in the department so I got my own room. Everyone still knew me so I didn't have to go through all the administrative procedures. Marcus brought me to the hospital and Mom joined us there just in time to wish me luck. Around 11.45 I was brought to the Operating area. They spent quite a while preparing the anesthesia and in the end I was not given a catheter. The same lady who did my pre-op was there to to the job. She actually thougth that that would be a pleasant suprise for Marc and I! Oh well, Dr. Lips had taken time off from his practice to come and look me up. He made sure that everything was OK for my operation so I was confident that they weren't making mistakes.

I think that the operation took about 2 hours. I can't remember being brought back to my room, but mom was there and my sister Angélique came by. The pain is bearable and I feel like I'm on top of the world again looking ahead at the plan which Lips and I had pre-meditated when he stopped by: Back to radiation and Iodine therapy soon, and we are going to try heat therapy on the larger tumors.

Cat naps...the rest of the night and I feel one coming up again. This morning I am sure to hear when I get to go home. Every day in the hospital is an infection risk...so I hope to leave soon.

By the way, I met Schönhuth after my operation. He told me the bone actually broke when they put the pin in. So lucky I was able to come so soon! He has done a nice job with only two small entry points. Genius!

Looking ahead again. Can't wait for my trip to Brazil!

PS: Hip Hip Hurray for WIFI in the Hospital!