Movin'in the fast lane

Wow, doesn't time fly. I just can't keep up writing this blog. As one occasion after the other is whizzing by. After the operation I was left with two arms that I could bend only at the elbows. The operated on arm is doing fine as I try to increase my mobility. The right arm is getting more and more painful as I move along. My mother spent quite some time with us again, running my household for me while I wasn't able. Bless her heart, for I wouldn't know how I would managae without her. As time progresses I am starting to get back my functions. This week I tried driving a bit, which seems OK again. However I have noticed that too much driving is painful and it sets you back a few days. I have allowed myself to drive for a very limited time and I expect to be in contact with the rest of the world soon. I have been going in and out of the hospital for many tests and talks. It appears that the pain in my arm is caused by a vertebrae that has been effected by the cancer. After 2 scans and an MRI I was able to see the damage in my body, once again. Dr. Pluymakers, the new orthopedic surgeon (a knight in fighting armor) is totally on my case and is moving at a very fast pace. Basically, the next surgery awaits me. However, we will be starting off with radiation therapy to the spine first. In the meantime, my arm is being treated too as post-operative treatment, the radiation therapy is supposed to get rid of the cancer cells that are still in my left arm. I am considering either a membership to the operating room or obtaining a life-long supply of Titanium. Either way the bionic woman née super woman, is still going strong.

What else is keeping me busy? At the end of next month I will be leaving Pricewaterhouse Coopers. It will be two years since I was diagnosed with cancer. A prognosis of 10 years seems very grim. I think I might opt for more. Fortunately Holland's social security is still somewhat intact. It is hard to imagine that with Obama on the throne in the US, the social system might just catch up with Holland's which is slimming down as years go by. As things go out here, every working person pays a percentage of their income towards various social plans. In my case I have to apply for a plan called the WIA which caters to people with long-term illness. A special doctor then calls out the verdict: either you are still suitable to join the working force or you are not. My verdict was that I was not. I am supposed to be happy with this as it will ensure an income of 70% of my last income without having to apply for another job. In other words, nobody will make me work again. And here am I trying to find useful tasks for the future, some of which quite ambitious. Right now, I find that I have to be strict with myself as I have a tendancy to do too much. Here is a picture which perfectly illustrates this. Ha ha...me trying to shop. What was I thinking? February will very much be in the light of preparing for a life without a job. More on this topic in the near future.

Frozen shoulder

Well, time flies. It has almost been 2 weeks since I went to the hospital for my surgery. It all seems to have gone well, but at the moment I am unable to lift both of my arms.

The lift arm needs physical therapy, I believe that the disruption of my arm has lead me to loose muscle tonus. I believe that with the right exercise it will be up to notch again in a few weeks time. The right shoulder endured a lot of extra use. The joint was already damaged but now the ligaments are giving up on me. Rest and the right exercises should be the key to improving the right shoulder. I went to the painlab since my operation and the anesthesiologist has given me some medication for the nerve pain in my right shoulder.
The Amintryptaline, as is is called is in actual fact an anti depressant which seems to work agains pain caused by nerves. The use of it has left me very tired. It just really drags you down. They say it should get better after a while. I am giving it a shot now. I also had a meeting at the Trappenberg (the rehab center). They are willing to take me on for a period of approximately 6 weeks. I will be starting in a few weeks time.

It has been strange the last couple of days. I has been freezing cold here in Holland and usually I would have gone skating. Here's some pics of the beautiful frozen scenery. I am most greatful that Kiara's father has taken her skating on natural ice. A phenomina that does not occur too often anymore. I don't drive at the moment. Not only is it slippery outside but the function in my arms is inadequate. I am hoping this won't last too long, as it is the ablility to drive that gives me my independance. So...even before rehab I have started to exercise my arms. A little bit each day should have some effect. I am pretty much staying at home these days. My mother is here to help me out and when she isn't Marcus helps me out. Just doing things around the house is all I can handle, really. I am tired mostly so I do catch my sleep. In a few weeks time I expect I will be out there again living my close to normal life. It is getting harder each day to ignore the consequences of living with cancer.

Happy again!

The days around Christmas and New Year were very stressful. Moving towards another operation was crazy and I have to admit that I was really anxious.
The operation of my upper arm was a tricky one because the head of my Humerus has been attacked by cancer cells. The cells make the bone brittle and I was worried that it might crumble.

All in all, the surgery went well. After an efficient admission to the hospital I was ready to go to the OR in the morning. I too was efficient. An experienced patient, knowing exactly what to expect. The operation was succesful and by noon I was back in my room. They had blocked my nerve of my arm so the first 24 hours were without pain, though I was unable to move my arm. By the evening the nerve was active again and the pain was bad. On the 31st they were prepared to let me go home but I was worried about the possibilities to get medication for the pain. I stayed until January 1st. Marcus joined me at midnight which was a strange way to start a new year. I came home on New Year's day. Feeling OK really. I am still resting a lot but the pain is already much less than it has been the past couple of months. My parents were here with me to help out. Today, monday, my Dad went home and Kiara has joined us again. I think I will be better soon. The best part of my tantrum the other day is that the Doctors are paying attention again. I will soon here more about their new strategy soon.

Back to the OR

A year ago Marcus and I promised each other that we would be spending the next Christmas together. And that is precisely what we did. Christmas was spent in 4 households. Mine, Marcus', his mother's home and my parents. It was the first time that the kids spent a whole week together. Unlike in other similar cases things went over really smoothly. Last Friday Kiara and I went to Almere where the kids went skating on Saturday while I finished my Christmas shopping. The tree that we had at Marcus' house was donated to Kiara. Decorated and all it was dropped of by an anonymous organisation. What I know is that the organisation was donating 'dream trees' to children with cancer. They had some trees left over and one of the mothers at Kiara's school had tipped them that Kiara deserved one too.
We transported the tree to Marcus' house which saved us having to decorate a second tree. On Christmas eve we had dinner and went to church in Amsterdam afterwards. When we got home we opened our presents. It was late, the kids went to bed without being prompted. The next morning we had brunch together. By the time we were done I was so tired that I went to sleep for a few hours. We spent Christmas evening and Marcus's mother's home and had a lovely dinner. On the second day of Christmas we celebrated at my parents home. We had a wonderful time. During the course of this week, however, there is one thing that kept going through my mind.









My next surgery. It is scarier each time. I will be staying at the VU hospital for the operation. A pin is being inserted in my left arm (Humerus). This operation will be much like the operation on my leg. The doctor (Dr. De Gast) expects me to leave the hospital in 2 days time. I am expecting a stay of 5 days approximately. My condition is different from that of other people undergoing such an operation. Anyway my phone number will be posted here. You can always try to phone my cellphone. Before my operation I have a radio therapy session of my pelvic bone. I am hoping that I am not the first to be operated on on Tuesday. That way I will be able to sleep in my own bed tomorrow. I will probably be in the hospital on New Year's eve so I wish you all the best of years and will write again when I leave the hospital. Visiting hours at the VU hospital are from 11.00- 13.00 and from 16.00 -19.30.

Well I guess I'm not!

A visit to Lips revealed that my premonitions were correct. The pain in my upper arm does indicate that the bone is so brittle that it can break very easily. Do you remember that I went to the first aid department on November 28 with precisely that question? "Please check my arm because it is about to break". They told me I was fine. I didn't even have to make a new appointment with my doctors. I then spent 7 weeks in extreem pain. Kiara has done a wonderful job documenting this periond of time in photographs. I spent a great deal of time om my sofa, unable to move my arms. I did my shopping, drove my car etc. not knowing that each load could have been the cause of losing my arm. Shortly after my visit to the first aid department I had a meeting with Professor Lips. I requested new scans of my shoulders which he luckily made. Last week while I was there for my follow-up meeting I heard that I had to have an urgent meeting with the Orthopedic Surgeon because I might need to have an operation. Last monday my mother and I headed to the hospital. I was extremely tense because up to now I have been so right about everything I felt. I decided that I would make a problem at the reception if it turned out that my meeting wasn't with Jiya. And low and behold...when I got there the receptionist told me that I had a meeting with another specialist. I blew up for the first time in almost 2 years, totally pissed off at their nonchalence. My tantrum, loud enough for other patients to hear, brought results.

Suddenly everybody was geared at helping me. My frustration was validated and the doctor that saw me at the first aid was tracked down and repremanded.

At the end of the day, when I went home I knew that I have to go back into surgery.

I need a pin in my upper arm. The situation is so urgent that they wanted to operate the next day. I told them that I wasn't going to do this before Christmas. So, I will be going in on the 30th of December. It feels like I am back where I started. The result of these meetings is that it has renewed our anxiety concerning the status of my health. Why did this patch grow so fast?
Why does my whole body hurt? Are my organs still OK? Am I moving towards a new fase? Where will things end up with regards to my mobility? I am starting to become the bionic woman. My mother and Marcus have been here with me, but the stress has hit them too.

Here's a picture which illustrates how they are canalizing their frustration by making beanies.

Well, I am going to celebrate Christmas first. Last night Kiara had her Christmas celebration with school. Paula and Bo came by and we had goodies afterwards. The next couple of days, Kiara and I will be staying at Marc's place and we will be going to our parents to celebrate. Kiara will be going to her dad's place afterwards, and I will be in the hospital on new years eve.

I am scared about the pain, my mobility but most of all, I am scared about complications. I hope that in January, I will be able to live to the fullest again.
And I really hope that I will still be able to pick up my art again.

I'm OK I guess

The surgery of my hand seems to have went OK. The pain in my shoulders is much worse, so this is easy to deal with. I do notice that the effect of the operation is getting tougher as I move along. I have seen enough hospitals, really. Marcus spent the whole weekend with me as well as Collin and Sidney. It's so nice to have someone to help you out when you feel this vulnerable. Tonight Marcus and I are off to do something really nice! We are going to see Dionne Warwick at the RAI in Amsterdam. I loved her singing since I was about 10 years old.

Speaking of all those years that have passed, in the last couple of months I have found many friends from the past on the internet, like my friends from ACST, in Tunis and from Rosemead in Littlehampton. It has been a wonderful source of happiness for me to find all those lost friends again. Thank goodness for the internet! (FB, Hyves, and Friends Reunited). Welcome to my weblog and I hope to be able to meet you all in the time to come!

Tomorrow I am back in the hospital to get an assesment on my humerus.
I refuse to go back into surgery before the end of the year, so I wonder what Jiya has to say.

Surgery again

The Morbus de Quervain is being treated. This time I get to go to the hospital in Hilversum. I haven't been on here much lately because I simply haven't been able to work on the computer due to pain. So here's a short note to inform you what I am doing.
The scare I had after the last treatment which had me going to the first aid department the day after my last treatment, was not a scare. I have to deal with the situation again that after telling people what is wrong and seeing the right doctors, now suddenly after 7 weeks they are rushing me to the specialist because, OMG....you might end up breaking your arm! Anyway, the tumor in the arm has caused the bone to become thin and brittle. That is precisely what I told them 7 weeks ago. I literally said that I was scared that my bone was going to break and explained why I thought so. They checked and told me everything was OK. Nobody said that I needed to go back to my specialist. I asked for the scans myself, and now suddenly they want to rush me in there and have made it is possible to see Dr. Jiya within 4 days (including the weekend). So, monday I will be going in to find out what needs to be done about the Humerus. For now...I will concentrate on today's surgery of the tendon of my thumb. I can deal with that, there is no cancer involved!

Never ending story

Waiting to recover from the last treatment feels like a never ending story. It is not the pain that I cannot handel, it is the fact that the pain (and perhaps a small portion the fear) are immobilizing me. I have been stuck in this house for approximately a month now with the exception of a few trips to the shops which are more or less impossible. The fact that I cannot do anything is infuriating. In the meantime, I am making my trips to and from the hospital etc.. There are a few developments that I have not yet mentioned. After a check-up at the Neurologist for my eye it has been decided that we need to eliminate a few things. Monday morning I will go to the VUMC for the first half of my neurological tests. This weekend I also made a trip to the hospital in Hilversum regarding my tendonitis. It was really refreshing to encounter a doctor who actually knew what he had to do. He has scheduled me for surgery for December 12th which is really very fast! He will be solving my problem with Morbus de Quervain which I believe started by compensating for the loss of function in my right arm. It will hurt a while but I will be happy to have one less problematical area, especially since I need that with the pain in my shoulders.. All in all, there is a lot going on in the medical area. It takes some adjustment after a month of not hurting. However, I must say that the pain is slowly but gradually deminishing. I am happy about that as I this probably means that the pain IS related to the last treatment.

Winter is setting in. I remember that when I was a kid I used to love the snow. Sunday night is snowed so much that I wasn't able to drive myself. This is my house! Luckily it all melted. Slippery weather means that I can't get out. One slip could cause me to loose my arms. Strange your reality can change that much!

Do I ever get bored?...

I get asked this question quite frequently and it always suprises me. People wonder if I get bored because I am not working, or at least not anything close to my usual capacity.

Well, these past two and a half weeks have been a real test as the pain that I have had to deal with was so tremendous that even I resorted to Tramal (Painkiller) and many hours in a horizontal position. As it is -that is if the specialists are getting their facts right- the increased absorbtion of Iodine is doing its job, which is basically killing as many cancer cells as possible. This causes inflamation and a build up of fluids in all the (28 odd) areas where there are tumors in my body. The high radioactive load left me unable to move my arms (shoulders) the past 3 weeks and I have been getting power bolts going down from my lower back to my 3rd and 4th left toe. This was really a period in which boredom could have struck as all I could do was sit and/or sleep. As you noticed I wasn't even able to get online, so the only distraction was television. I still wasn't bored. What people don't realize is how much time and effort actually goes into getting better. All my daily tasks took at least twice as long. I am also at the hospital on an average of one to two times a week. Usually this takes at least 4 hours, that is encluding my trip to Amsterdam, sometime even longer.

Taking my medicine in the morning takes me an hour before I can have breakfast. Multiply that by 7 and that is almost a working day that I lose out on. Then there are the trips to my physical therapy and hydrotherapy which take up another 3 hours a week if I am managing to go.

I also have Kiara to take care of and a household to run. Somewhere in the midst of all of those activities I try to spend some quality time with Marcus as well, not to mention all my dear friends and family who keep me on the ball. I really cannot comprehend how anyone could think that I am bored. I don't need to get a life! Thank goodness, I have one!

The past is history. The future is a mystery. The only time we really have is now - just this moment.

In transfer

Being back in Holland takes some adjusting. It is incredible how inflexible people are and just how little pride they have in their work. I obviously have a lot of administration and arrangements to be taken care of after a month, but people just can't seem to get things right the first time round! I have found myself having to call certain companies over and over again to sort out their mess, concerning me! That is the most irritating part! One of these companies was my provider, hence the lack of posts these past few weeks.

Much has happened. I had radiation therapy and my Iodine treatment. I am very pleased to say that this time round the Iodine uptake was excellent, the implication being that I am still considered to be treatable. A totally different situation from what we were expecting around July. I have to say that despite the incredible pain, I am feeling stronger every day.

It is the incredible pain that has me locked up in my house again. Marcus has not only been a wonderful partner to me, he has also been functioning as my nurse and driver, just so that I can get around the place. We have also been spending quite a few hours in the hospital for various check-ups.

In the meantime, Gulsen, Saskia, Ineke, Myriam, Aldith, Angélique and her husband Hugo, looked after Kiara in my radioactive week. It is so wonderful how communities can raise children. I am ever so greatful for all these wonderful people, spending their precious time helping me and Kiara out. Kiara is in splendid shape!

One of the places Marcus drove me was to the reunion of Sweeb women.








Up to 10 years ago it was a bi-annual gathereing of the women decending from my maternal grandfather. 3 generations of beautiful women got together to discover their similarities and differences and to just talk about life. Look at my cousin's daughter, Aisha and myself...don't we look alike? And we share the same name too! I held a mini workshop in search of our identity using my PR and marketing skills. It is getting harder and harder for me to do things like this as the pain I was in was excruciating and by Saturday night I was worthless. None the less, we managed to produce some mood boards which I am particularily proud of.

Like the most of last week I spent Sunday through today, either in bed or visiting doctors.
I finally managed to get to the Neurologist today to find out what is happening to my eyes. I will be put through a series of neurological tests to rule out Myasthenesia Gravis which by know I do not believe I have fallen victim to. The question is: What is going on?
I seem to have met a Neurologist, Dr. Visser, who is determined to find the answer to that question. My meeting was followed up with a meeting with Dr. Lips who was delighted by the news about the uptake of Iodine. He is making extra scans following up on the Pet scan (finally the total body) that was taken just before going into my treatment a week and a half ago. The scan shows spots that I knew were there. No suprises! Which is just what I was looking for.
Dr. Lips seems to get a shock every time he sees my scans and apparently forgets that the spots were there in the first place. I have noticed that the Doctors can't get their heads around my case. Luckily I can! I am on top of things and they are following my lead. I am most greatful for that!