Birdsperch

25 February 2008

Another one bites the dust

Februari 22nd, 2008. After 4,5 months of uncertainty it was once again time for a radioactive Iodine (131) treatment. It has almost become a routine thing for me, even the doctors and nurses know me by name now. I dropped Kiara off at school and Marc picked me up to bring me to the VU Medical Centre. After a thorough check-up at the Nuclear department I went to the 3rd floor where my admition was to take place. This time I had the middle room, number 58, and still faced the construction site which frankly didn't look much different to me. My towels, toothbrushes and other necessities were carefully laid out on my bed. Everything brought into the treatment room must remain there, therefore it is only possible to bring disposable items. (Except for my ipod and glasses for which and exception has been made). I had many questions this time regarding the up-take and the effect of the last treatment. I am trying to get a clear picture of my current status and elimination seems to be the only way to achieve that. There are 4 types of Thyroid cancer, each with their own characteristics. Mine is supposed to be Follicular,...at least that is what the pathologist has concluded. Follicular Cancer of the Thyroid responds amazingly well to the Iodine treatment, and along with Papillary Cancer of the Thyroid, it is considered to be the best treatable sort. I have been wondering if a combination would be possible of Follicular Cancer and Medullary Cancer as I myself, have already ruled out Anaplastic (I would be dead now If I had that!). Medullar Cancer is harder to treat as the absorbtion of Iodine is much lower. Imagine the tumors to be sponge-like. One type is more penetrable than the other. And what if I had both? This question was too difficult for the doctor's co-assistant, so he passed it on to Dr. Van Schie, a most amiable lady who came to my room especially to give me my advanced lesson in Thyroid Cancers, as she sat on the end of my bed rather like a schoolfriend would in a boarding school dormatory. She had also heard about my request at the lab to have my blood tests examine a little faster this time. Before admittion the Thyroglobulin is measured....it is a marker which gives us an indication as to how well the previous treatment responded. Usually I have to wait 4 weeks for the result, however, Dr. Van Schie has promised to try to speed things up.

My stay was OK, yet boring. I felt less naussea and was clearly in a much better physical and mental state in comparisson to the last time. Moments like these are good for the spirit, as my confidence is boosted. By the evening I could feel the tumours starting to itch. A sign that something was happening indeed. Instead of a visit, Dr. Lips phoned this time to see how I was doing, rather than passing by. He was able to tell me that my TSH values were increadibly high! This implies that the circumstances for a good absorbtion were excellent. Good! This is why I stopped taking my Thyrax earlier this time. A least my messed-up metabolism of the passed 4 weeks was going to pay-off. Around 10 pm I could feel that my blood pressure was soaring. In the passed year I have learnt to feel my blood pressure changes. I decide to go to sleep and didn't wake-up until 7am. By then I was in pain. I was happy as I was confident that my treatment was working. Another boring day passed, and by 11 am I had hoped to get the call for my measurement. (They check my radioactivity before releasing me). I got impatient and made a call to the nurses desk. They had bad news for me as someone had lost the Geiger counter (A device to measure my radioactivity). After many calls and measurement with an antique machine I was released! I took my shower and waited outside for Marc. I had been craving Mc Donald's (probably cancer inducer #1)! so we drove straight there for lunch. In the afternoon I reached another goal...I walked to the nearby heathland, had a stroll, and came back home. Another one of those things I thought I would never be able to do again. Dinner, and back to normal.

Me on my stroll

22 February 2008

Cell attack

Off to the hospital now for a new Radioactive Iodine treatment. I will not have my cell phone with me. This is my hospital numer: +31 (0)20-7955193

Ready for battle!

20 February 2008

Finally a total body scan!!!

Today, I finally got my way. A total body scan to check whether we are missing any areas. This time I wasn't frozen as I had the lucid idea of wearing thermal underwear. After having an injection with radioactive material I was finally scanned from head to toe. I haven't heard the analysis yet but I an educated glance at the scans tells me that there are no suprises. The areas where I thought I felt new tumors were indeed areas that looked active, but they are small, and I am presuming that they were there all the time. I think I can feel them now because the pain in other areas is dying down. The back and the hips look very stable. I am not so sure about my head which shows a larger section, but we need a different type of scan to differentiate between the actual cancer cells and other bone cells in the area that are fighting to irradicate the cancer cells. These cells also hurt and show a similar picture.

How I feel? Well, I feel like my intuition is not failing me. A very reassuring thought. I feel much happier now. I really do not understand why this was so difficult to reallize! We are now 10 months into my treatment...it would have been nice to have an older scan to compare this one with. I will hear more about the scan sometime next week, I think. We love Detector 1 (my scanning machine). It is much better than all its brothers with names ending with 'tron' (the ending of magnetron, the Dutch word for microwave) as it has given me an overall view. This coming friday I will be back in quarantine. My number will once again be posted on here as soon as it is available.

17 February 2008

My first Godson is born

Welcome to the World, my dear Valentijn! I hope you have a wonderful life!

Anniversary of a fractured back

Today, precisely one year ago, I fractured my back. The anniversary is painful yet full of hope, as I try to come to grips with an altered horizon.

Living each day to the fullest is an energy consuming way to live, which is why I seek clarity about my prognosis. A 3 year prognosis requires a different approach to a 10 year prognosis. This is the uncertainty with which I live at the moment.

In the meantime we had a wonderful weekend visiting the flea market of Beverwijk. Kiara, Marc, Collin and I shopped till we dropped yesterday. Armed with my grape-coloured wheel chair we hit the Dutch Bazar on a very cold Saturday afternoon. We ate and drank and bought nice clothes! It was an extraordinary day. Quite remarkable as I had some tummy flu (including frontal and rear secretions) the night before to add a little spice to the mumps.

Earlier that day I had been the 'chick on a mission' as my sister would say. As my rehab is coming to an end the doctor of the centre had decided that he would like to see me cycle again. Determined as I am I headed for town with my bicycle in my hand to let them put some air in my tires. I earnestly told the guy at the bike shop that I had been declared an invalid and this was the moment I had chosen to cycle again. I have never seen anyone fix a bike that fast! After some business in town I headed home again. I cycled home. What a rush! Last night, as Marc and I caught up on Valentine's day, Kiara spent the night at Aldith's. This morning I picked her up by bike. We cycled home (Kiara on the back)! I have one happy little girl. And all this on the anniversary of my back fracture.

14 February 2008

A case of the Mumps

Since January 7th, the day after I went back to PwC, I have been battling a severe flu. All my treatment and the cancer itself are antagonizing my resistance to bugs. An infection of my nasal cavity caused me to sniff and snotter for more than a month. When I decided I was fed up with it I went to the doctor for an antibiotic cure. The day after I started the cure a bronchial infection broke out. The Doxycycline appeared to be drying up all the mucus in my lungs, but my nasal cavity was still not much better. On one side of my mouth a secretion of saline saliva has been bothering me for a while. I wondered what that was. Suddenly on Tuesday morning my cheeks blew up to humongus proportions, as if I had put a pingpong ball in my mouth. It was troubling to me. Was this a lymph node or a salivary gland? The first being bad news, the second being annoying. I freaked out and called my doctor.
The earliest I could see him was the next morning. 8.40 in the next morning I made my appearance. The doctor told me that I had Parotitis (a sister of the Mumps) an infection of the salivary glands. I have now started my new cure of Amoxycycline. I hope to be ready for my next treatment! Who would think that I would get that at the age of 39! My resistance is so low that it looks like I could catch anything. I assume that these are viruses and bacteria that we have around us all the time. But no one is bothered by them as a normal resistance keeps them away.

11 February 2008

Balancing act

I have been absent for just over week on my blog. As I resume a "normal" life it has become apparent to me that it is a balancing act between facing a future filled with vitality or a future filled with mortality. In other words; my trip to Lips has not brought any clarity about my prognosis. I have found a few odd spots that resemble tumors and a scan was made. One rib showed a tumor, but I am not so sure if it is the same area that was detected before or a new area on the same rib. I have finally gotten the 'word' go for a total body scan. This time we will be including my arms and feet! I have been fighting for an overall assessment....a so-called check list to work with. On the 20th I will be going through the machine.

In the meantime I have stopped taking my medication (Thyrax) in preparation for the next Iodine treatment. This time I stopped a week earlier in order to hopefully facilitate a better absorbtion. For the moment being this means that my metabolism is off balance. A loss of energy is the result.

My two weeks of silence were spent reflecting on what has happened the past year...and how to give meaning to my future. On my list are things like making arrangements so that things run smoothly in the event of my death. A visit to the notary's office beared a testament which somehow has brought about a sense of tranquility. Another thing I have been doing is answering Kiara's questions, many of them concerning a possible death. I will elaborate on that matter in a later post. And then there is the matter of a renewed relationship, which has brought about much joy, but obviously requires some adjustment. The main target at the moment is resuming work. At the moment I work 2 hours a week in Amsterdam. (My trip to work) It is suprising how much energy that consumes! The doctor concerned with my reintegration has given me the word go to work up to 4 hours a week. This is my target for the next month.

All in all...a new life commences. In the mean time February 17 is coming up, the anniversary of when life was normal for the last time. Next Sunday precisely a year ago, I broke my back. A life-saving event.

30 January 2008

A normal life resumes?

Lately, the sign of the time has been about picking up my life again. Having the ability to have a social life again, starting to go back to work, looking after Kiara again and being in a relationship again, are all signs that my horizon has broadened enough to even contemplate a future. It is at this time that sadness and fears are on the surface, yet at the same time my road to the future is manifested.

Things like taking Kiara to the optician, or the dentist, or having her friends over are almost normal again. But her tears at night when she goes to bed are a constant reminder that I am not quite there yet. Living with cancer is OK really, if the sadness and fear are only your own. It is the pain that your loved ones have that is killing. On the other hand, it feels right to have an open dialog, so that I do not have to wonder what is going on.

My own fear is based on the fact that the last treatment did not have the anticipated result. I feel pains and discomforts which I did not feel before. At the same time, my orthopedic recovery has been phenominal. When you have cancer, every ache or soar could be a potential tumor. I have not seen the specialists since the beginning of December and I seem to have lost the confidence I had before. Today I go back to Lips to evaluate my state.

The fact that I worry, is worrying to me.

22 January 2008

Two chicks go Chinese

Last Friday I suprised Kiara with a visit to the Chinese restaurant in Laren. It is a restaurant with a very fine cuisine and Kiara is just simply crazy about their Har Kau. It was a fun night out! She is getting so much bigger and it is easy to have an enjoyable time with her. We decided to order something new, so

Kiara went for the shrimp and I went for the Squid.

We took our time and were there for at least 2,5 hours. Every once in an while Kiara would tekst message her grandmother.

We had LOLs. Obviously we were not able to finish it all. So I had them make a doggy-bag. I explained the doggy-bag principle to Kiara
, that it was not chic to say that the food was actually for yourself. When the waiter
arrived Kiara said..."
Please, Sir, can we have a doggy- bak..."(bak being the doggy's dish in Dutch). I was ready to explain the bak/bag thing when she finished her sentence; "...even though we do not have a dog". I did not know whether to feel embarassed or to laugh. I chose the latter which mounted up to huge hilarity. There was no booze involved, but I could have sworn she was drunk. We ended our meal with science fiction Lychees floating in a bowl of frozen Carbon Dioxide with hot water. A cute little gimmick that has made it to the restaurant scene.

16 January 2008

Not taking any chances

It is said that the makers of masks sometimes put a spell on the buyers. If this is true, than one could imagine that this is most likely of masks made for tourists.

4 years ago I bought a mask in Jamaica, rather much like the one in the picture. I hung it by my bed, superstiously thinking it might be protecting me from intruders. My mother and several other people felt uncomfortable in its presence, but I kept thinking....it's just a mask. In an older entry called Dreamin' of the Reaper, I mentioned a visit by the Grim Reaper in my dreams and that he was disguised as Jack Sparrow. You see, I am a big fan of Johnny Depp, so he could have easily tricked me. I was sharp enough to send him away to go and fetch someone else.

A couple of weeks before Christmas, Kiara came into my bed and literally turned white. She did not know of my dream and told me that she saw Jack Sparrow's face in the mask. Well superstious or not....I decided that it was time to get rid of the mask. Kiara had stipulated that there were certain regulations to take with regards of dispensing the monster. It was not to be burnt, I was not to throw it out and I was not to give it to ill or black people! Well well, I had a problem. I suggested we would leave it behind in the woods or a burial ground....but both options were definate no no's to Kiara. Seeing as I was hoping to calm her I happened to mention my dilema to my Hydrotherapist that day. We came to the conclusion that if I gave it to her, she could decide whether to keep it or to discard it herself. Christmas came. I took the mask down but had a few weeks off.

Yesterday I took the mask to my therapist. Strangely she took one look at it and was disgusted. "What an evil mask", she said and instantly threw it away. It made her feel so bad that she immediately went to wash her hands. Makes you wonder...the fact is that I felt relieved that it was out of my hands. Kiara also finally slept well at night. She didn't even know I had waited that long to get it out of the house. My therapist put on some music. Strangely the first song on was: Bird of Paradise. The mind boggles!