Nosejob

Today I was treated for a spot on my nose. Five years ago they took out a small spot, a Basal Cell Carcinoma. The treatment was less invasive, more time consuming. They put some compound on it which had to stay there for 3 hours. Then I had to be exposed to a very bright red light.  Then it was time to go home. Now I have this big white bandage on my nose. It will take some time, but hey, look what I got!!

Back from France

Coming home from holidays doesn’t seem to be the best time for me. In 2006 returning from Australia, was the greatest shock of my life, the confrontation with mm. But every summer since didn’t end as one would wish. In 2007 I got my allogen SCT, which got me down for about half a year. In 2008 I went to France with a complete remission and when I cam home I got the call that my m-proteins had gone up. That the first time in my life I heard Els swear. In 2009 there was some room to enjoy, but I had to have my third DLI. In 2010 the postman rang twice. In spring I came home sick from Zakyntos. In the period after this I was plagued by my ears. The summer 2010 I appeared to have a big plasmacytoma, which needed treatment urgently. This year I came home with a nasty sinusitis, which causes such a nasty couch that I so violent that it takes my breath away. Also at night I’m up every 2 or 3 hours. All of this has a tremendous effect on my not so rich physical condition.

What a sob story….. Is there nothing better and nicer to write about? Of course there is! It was wonderful in the Vendee! A fantastic camping without wifi on out patch. Finally time to read! In real books with paper and ink! In the next blog I will tell you which book I have read!

To your health

Check up July 5th 2011

It’s been a week already that I went to the hospital for my checkup. I got my APD infusion too. For the real news I had to wait for a week. The results were fine. My m-proteins are stable (whinny whinny). We could even speak of a slight decrease, although 3 and 2,8  are both three. For graph it looks nice though.

Check up July 5th 2011

My music

Bonne & Sander

I have been bragging for a year about my studio, but there was little to show for. That’s why I made a page holding my temporary products. Go to my music page by clicking the tab or this link.

Results may 24th

Just forget about the whole Lambda and Kappa story. As fas as I understood anything at all, it was too good to be true. This 2,8 appeared to be the m-protein value after all. The number we like to see as low as possible. Last week I asked my hematologist to explain  the whole story, because I didn’t understand. She sent an email to the lab and today the values just said Kappa (the myeloma values we want as low as possible).

Today, 6 weeks later, a slight increase was noted. From 2,8 to 3,0. This doesn’t keep me awake. My reservations were true. 0 (zero) was too good to be true and 3 isn’t too bad.If it stays this way for the years to come, I’m a happy man. But what I really want is a little stability. Stable, that would be nice!

Graph May 24th

Check up May 24th

May 24th, this is it. Check up time again. An extensive program today. First a check of my bone density, then ordinary x rays. Grab a sandwich and draw blood. Now I’m waiting for the hematologist. I’m glad I have my latest toy with me. I’m typing this in my iPad. Music on the head, and when I’m done typing, I can read the newspaper or play angry birds. Or surf the web. This hotspot is working fine.

Well mr. Jobs did a good job, for a fact. The most amazing thing is that an absolute Apple hater like me can be turned on. I catch myself regularly searching for information about iMacs, of course not to buy one, but just for comparison reasons. I’m glad my phone is working just fine, that iPhone is a little too expensive for me….

The nice thing is, it simply works and keeps on doing so. My Windows 7 works too, but after a few weeks there are always strange things happening that you can’t explain. About a year ago I wrote as a joke that I wanted an iPad but look at me now. I simple couldn’t stand up to the seduction. Well the flesh is weak. How weak we  will learn in a couple of minutes when I talk to my hematologist.

iPad

Next day:

The results of the bone density test were already in. This goes really fast! My hips and pelvis are just fine, my vertebrae have a slight form of Osteoporosis. This is logical, my vertebrae were my biggest problem from the beginning. In 6 weeks we will start with APD (bisfosfonate) . I will have those infusions every 3 months. I hope the kappa and lambda riddle will be solved next week. I will present a new graph when the results are in.

Results april 12th

It took awhile and it isn’t clear how I should interpret these results. In 3 weeks it should be a little clearer what these results exactly mean. It has all to do with the light chains (some technical stuff for my fellow mm patients). I always had a spike in the IgG kappa, now the spike is in the IgG lambda. What this exactly means is above my comprehension  and also for many others. Conclusion is: the increase has no meaning for my myeloma and if it does, it’s within the values that could be bad.
My simple conclusion for the time being is: It went up but within a safe range. My second conclusion is: It sucks, because the increase is way too fast for my liking.

Let’s conclude that it went up too fast, and hopefully I have complained too soon.

April 12th 2011