Budget and Personal Finance

I again didn’t sleep very well last night but this time I also woke up early (6:30am). Sheesh! While staying in bed did I try to type an e-mail using my iPod Touch but the lack of a proper keyboard in combination with the horizontal position was too much of a challenge. I got up, fed the cats, made breakfast and went downstairs to the office. I was very motivated to continue with the Salesforce budget module and especially the reporting module. I love it when you’re able to see patterns emerge when running a report on life data. But spanners were thrown in my works, I became annoyed for all the bad reasons: good mood gone. I hate it when that happens. Waste of precious time.

Super Nurse called with an update. She had spoken with the Neurosurgeon and they had agreed that the headache must become less before I can be allowed to reduce the Dexamethasone. I told her about yesterday’s seizure and she told me that we handled it properly. My hand still feels weird but apparently a seizure may be like a powerful electrical shock that can have a paralyzing effect on muscles for a number of days. We agreed that a Dexamethasone reduction was out of the question, especially as also the headache has not become less. To be continued.

This afternoon a colleague came to visit me to help me with the following interesting scenario. To me it is evident that there is a reasonable chance that I will not reach my pension date alive but I do not expect to not make it through surgery. Nobody can predict which way I will come out of surgery and how much time I still may have left. We’ll have to wait for the verdict of the Neurosurgeon.

But I consider it important to prepare for my future (or at least my wife’s), to have control over my life. Actually, if you allow me to be very honest: the lack of carreer end that I hoped to have forces me to find ways to evaluate my personal success or failure in a different way. The scenario analysis is to demonstrate (or not) that all life that I have left in me can be enjoyed in a sufficiently relaxed way (financially) by both my wife and me and that my wife has no (financial) problems beyond that point. It is too early to tell what it is going to be but I feel somewhat relaxed about the initial outcome. The real number crunching still has to come. Thanks for your help Eric-Jan!

Dexamethasone but no CT Scan

Super Nurse just called. She asked how I was doing and referred to my voice mail. She had spoken with the Neuro-Surgeon and they agreed that in case the headache would have become less (disappear) that I can reduce the Dexamethasone. That is however not the case. To minimise the side effects of the Dexamethasone (without knowing I have several: thick feet, desire to eat more, feeling tense and hyper) she gave some advise on how to counter them:

• Put my feet up in bed
• Take the Dexamethason around 18:00
• Don’t drink tea and coffee in the evening but warm milk (forms a protective layer in your stomach)
• Don’t eat too much
• Take up to 6 paracetamol per day against the headaches

I asked her for an additional CT scan but it seems that makes no sense. The CT scan will not reveal anything in more detail as long as the edema is there. She understood my concern about the grade 3 Glioma but explained that although a grade 3 grows faster than a grade 2 it will not be an explosive growth. She will contact me again on Thursday the 3rd of April to discuss my situation. If the headaches have become worse or I have started to throw up (especially during the night) I have to call the hospital immediately.

I have decided to now start regularly take two (harmless) homeopathic drugs my mother suggested me to use:

• Cinnabaris (D6) which helps very well against Sinusitis to avoid confusing the headache caused by the edema
• Zincum Valerianicum (D6) which helps to calm down a bit

Endema?

Today will be a busy day and it started with a lousy night. Although I didn’t drink anything last night (coffee, tea, water) after dinner and went to bed around midnight did I wake up every hour of the night to go the toilet. I have a numbing headache (it’s always there but not really painful, a kind of permanent pressure)  on top of my head on the left side.

My gastric acid levels are still high, the pain in my stomach has not become less. Again, it is not unbearable at all but just an indication that I probably should do something about it. During my working period in Italy have I learned to appreciate espresso and although I already cut down on it (max. two cups per day) do I now think I should not drink it at all in the evening. Every evening my sweetheart Monling prepares a dish with different kinds of fresh fruit for me. Thanks baby, I love it!

I would like to have another CT scan made and have it compared with the CT scan of the 22nd of March. I suspect that the endema has not become better and if that is the case this could mean something for the activity of the Glioma. I’ll try to approach this positively, believe that as the 24th of April draws closer that also psychosomatic factors are going to play a roll but I need to know. Enough is enough. I left a voice mail with Super Nurse.

My Father’s Birthday

To celebrate his 79th birthday my father invited us (most members of the family, including my aunt) for dinner in a restaurant in ‘s Graveland called ‘t Swaentje (The Little Swan). Wonderful food, friendly service and a relaxed atmosphere. I was afraid of ‘emotional’ situations but nothing happened. We has a very pleasant evening. I was glad to be home though and went straight to bed. 

It was especially nice since my aunt was there as well. We (my aunt and I) hardly ever meet each-other. We (my wife and I) have been travelling a lot abroad over the years and we’re clumsy with birthdays (forget them, don’t know when to go, too tired ..). She presented me a with a cookbook by Nicola Graimes “Whole Foods” that gives more than 100 vegetarian recipes for “Health and Healing”. I have several cookery books, including ones about vegetarian cooking but this one is the best. If I had had the right ingredients this weekend I would have cooked something already. Thanks aunt Yvonne!

In his blog Mark Miller (Markmillermusic) has put a few documents on diets and gliomas in his library. Apparently (I’m actually surprised it surprises me) there is this relation but I have no clue what to eat and what to avoid to improve my chances. At the moment I drink no alcohol (for obvious reasons) and try to eat less. It is a good start but I can do more. I’ll keep you posted.

Seizure II

Yesterday, while feeding the cats, I was struck by a seizure (for the second time). I felt the seizure coming and was able to tell my wife to call an ambulance before the convulsions really started. I didn’t loose consciousness (neither did I bit my tongue etc.) but after the seizure I was unable to move my right arm, hand and leg like this first time in Japan. The fire brigade had to come to transport me out of our house through a window on the first floor. Must have been quite a show, the whole neighbourhood was present. Under different circumstances I may have enjoyed it as well.

I was taken to the same hospital where I went before (the hospital that will perform the surgery). On the first aid department of the hospital we had to wait for hours. Blood-pressure was high (170 over 100) and once a nurse was able to get a blood sample through the IV (finally she gave up and used a normal needle) all lab results proved normal. I had a Posticatal Paresis (a partial paralyzes that happens especially in case of a clonic-tonic attack) in my right leg. Slowly I recovered the feeling in my arm and hand but my leg remained paralyzed.

My parents came and when it became clear that walking the stairs at home would be no option did they volunteer to get me some support equipment to turn our downstairs into a bedroom/toilet/bathroom. They had a hard time finding the home care center and were only just in time. Thanks guys for the trouble!

The Neurologist on duty called my Neuro-Surgeon and they agreed to perform a CT scan. One scan without and one with contrast liquid. The outcome was an Cerebral Oedema and a slight Midline Shift. I’m especially concerned about the midline shift as this is a condition where one side of the brain pushes aside the other.

The Neurologist prescribed an increase of Keppra (500mg 2 times daily has become 500mg 3 times daily) and Dexamethason (4mg twice daily). Dexamethasone is is used to counteract the development of Oedema. I will be contacted by the team of Neuro-Surgeons to discuss the way forward.

I hope that this seizure at least increases my priority. Especially the The Cerebral Oedema may be caused by a partial increase of the grade of the Glioma (from grade 2 to a partial 3). I was allowed to go home, had a delicious dinner made by my sweetheart and went to bed.

1st Degree Reiki

Back in December I informed my team, manager and colleagues that I was diagnosed with a Glioma. My manager and good friend offered to consolidate all reactions from colleagues and friends and to forward these to me. I had expected some reactions but never expected to receive so many kind and warm wishes from family and friends all over the world. One of these reactions was from a colleague who was one of my team members back in 1998. We lost touch in 2001 until we met each other in December last year after I rejoined the company. It is amazing how things can go.

In his message he offered to treat me with Reiki as he was (and is) convinced that he could help me. I was moved and honoured by his offer and gladly accepted it. During my first Reiki experience did he introduce me to his aunt, a Reiki master. Together they gave me my first Reiki treatment and it was a warm relaxing experience indeed although I must say that I didn’t feel quite comfortable with the card readings and other techniques used by his aunt. During the Reiki treatment I felt so relaxed that I fell asleep.

I appreciated his honest and objective view of Reiki. Reiki comes across as “clean”. After that first experience my Reiki friend has treated me several times, even in the office, and every time did it have a pain relieving and relaxing effect. He told me about the possibility to treat yourself and what is needed for that: to be taught how to become a 1st degree Reiki practitioner. I wanted this badly as I live far from my Reiki mentor and as I prefer to be independent. For that reason my mother and I went to see his aunt today and we spend most of the day at her house. We went through several rituals and practiced on each other and at the end of the day we received a certificate.

This is however not the end but the beginning of my experience with Reiki. I must practice Reiki twice daily to gain enough experience to make it really work for myself. And that is where my my problem lies. I simply can’t concentrate on the procedure as, apart for reasons of physical discomfort, I’m unable to clear my mind. This is not only the case with Reiki but also with doing sports or concentrating on anything that is not channeling my thoughts. It’s sad that this is the case as in these last months before surgery I should be doing fun and good things.

Bad news

The Neuro-Surgeon dealt us quite a bad blow today. Let’s start with the facts:

1. The tumor has become more obvious (demarcated) in the functional area for speech. This does not necessarily mean that the tumor has grown but at least it means that the Glioma has changed
2. The loss of right motor function has become more obvious. This is not necessarily due to the Glioma as rheumatism has kicked in again with full force since I had to stop with a drug called Eternacept (Enbrel)
3. The results of fMRI and MEG show that the Glioma is about 2 cm away from my speach area and has probably infiltrated the motor area

The first conclusion is that (Awake) Craniotomy in combination with Penfield brain mapping is no longer an option as it is considered too risky. The Neuro-Surgeon explained that he can’t remove a Glioma that has already infiltrated a function area. He does not consider the removal of the Glioma near the speech area and not near the motor area an option (near an option (a chain is as strong as the weakest link). Awake Craniotomy in combination with brain mapping was my best option as it combined a contolled risk with optimal tumor tissue removal.

The two remaining options are “Wait-and-See” (or any other fancy term) and a “Regular” Craniotomy. We had discarded the first option before and now that the Glioma seems to be growing is that still a good choice. The only option left is a Craniotomy and we were informed that although I will not be awake during surgery my motor function will be mapped without my cooperation.

The Neuro-Surgeon described a study that was performed among 200 patients with Glioma. These patients were divided in three groups: “Wait-and-See”, “Craniotomy” and “Awake Craniotomy”. The prognosis for the first group is poor, excellent for the third group and somewhere in the middle for the second group. I will try to obtain less vague information but I guess you get my point. My prognosis today is roughly 50% of last week. Surgery is planned for April-May.

Tomorrow

Tomorrow will I hear the outcome of all the tests I hated so much: MRI, fMRI, MEG and Neuro-Psychological Tests. Peanuts in retrospect. Peanuts compared to tomorrow because tomorrow I will hear the outcome. I would like to think that it is the beginning of a new life rather the end of the old. I’m not superstitious but now I am. I don’t know what to expect. What will I write tomorrow around this time? I dare not think about the many possibilities.

Life around me continues at the same speed, it is me that has slowed down. Will I get the opportunity to merge with my old life again? Should I want that to happen or does it not matter what I want anymore? I dare not make promises to myself. I feel that I have almost come to a complete stop. Some friends are planning their holiday, others are fighting for their job. It is so unimportant what we do, we make so little difference. How can I mobilize the energy in myself, the energy that I need to move on. Should I want to do so.

Tomorrow will I hear the result. I hope to hear that surgery, the awake craniotomy, is still a valid possibility. That the tumor has not grown. That the prognosis is still good. I’ll keep you informed.

What is my reference?

This morning I went to see my GP to brief him on the status of the checks in the hospital. We had a long chat on what this is doing to me and I explained to him my feeling of being lost. Lost as in having no honest feelings or at least no feelings that I can trust. Until now I knew I could trust myself and my feelings but after the experience of Thursday last week I’m not so sure: during the Neuro-Psychological tests I became almost uncontrollably angry when I was unable to perform certain tasks. I used to be my own unwavering observation point, my reference point. In the new situation this reference point is changing. I need a new reference point to see the change that is taking place in myself but that reference can’t be me. It is an unnerving thought.

I know that the Glioma has spread to the frontal lobe, the part of the brain where (according to the Neuro-Psychologist) not only emotion resides but also the ability to control that emotion. My wife confirmed that my fuse has become shorter (it was short to start with) since the seizure. I notice this myself. Sudden flares of anger for no reason at all quickly followed by feelings of intense remorse and shame. Something similar may go on in other functional areas of the brain. In which way and to what extend are flaws in my character and my upbringing magnified by this tumor? This too is an unnerving thought.

This afternoon we had an appointment with the Psychologist. She was very curious to know how things went with the fMRI last Friday. We discussed all details and she asked me whether the fear factor had changed (during a previous meeting set at 11 on a scale from 1 to 10). I hadn’t asked myself the same question yet so was quite surprised that it felt like a 9 to me now. People you can trust, finding solutions for fear increasing factors and Systematic Desensitization do actually help. A comforting thought! 

The snot thickens

Got up at 10am this morning from the sounds of the phone ringing with a splitting headache and sore muscles and joints. How nice. The walk to the hospital yesterday through a rain storm and havind to spend hours in a cold examination room (without my beloved long johns) have probably worsened my flu.

After a quick breakfast have I started answering e-mail. My today’s objective is to finish draft memo and org chart for others to complete and I have to go to the hospital for a blood check that is overdue. But first a few lines in my blog about an e-mail I just received from an Italian friend who sadly recently lost his spouse to cancer. The topic is DCVax-Brain Cancer Vaccine Enters Clinical Trail.

There are a few things interesting. First of all the article speaks of brain cancer whereas we were told that any cancer in the brain is called a brain tumor. I have to check this. Then there is a description of a vaccine. It appears to be possible to create a kind of individualized vaccine based on two components: (1) tumor cells from the patients’ removed tumor and (2) purified dendritic cells or immune cells from that patient.

The article states that the trial is for patients with a glioblastoma multiforme (grade IV), which belongs to the family of astrocytomas. I’m still not sure what type of glioma I have, my neuro-oncologist and neuro-surgeon continue to say that this will only be known during/after the surgery. However, from all information gathered so far (e.g. Astrocytoma: Causes, Symptoms, Diagnosis and Treatment) do I guesstimate that I have a astrocytoma (grade II).  I therefore assume that I do not (yet) qualify for this vaccine. It is definitely worth following up though. I will gather more information and discuss it with my neuro-oncologist. I’ll keep you posted.