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It’s 3:00am. According to my schema I take my 7th dexamethasone in about 6 hours. This morning I was red as an Indian and I itch all over my body. After 2 hours my sleep medication had worked out and I followed my clock about an hour. Then I decided to go downstairs. Els’ alarm will go off at 6:15 so I shouldn’t wake her with my restless turning. Yesterday I watched some TV between 1 and 3, while on my lap I did some work for the CMWP website. At least you do something useful. In the daytime I was very hyperactive. Syd from New Zealand called it “opinionated” I second that emotion. I must admit I used to be a person with strong opinions, which I like to debit in good company. I have strong opinions about the political quicksand in which our country has landed, and I also like to express my feelings about our crown prince. But I like to keep that within the confines of living room. I sometimes pity the sweet people who have to listen to all of this and who don’t have access to my on/off button. I’m happy to say I’m no the type of a trouble seeker, but we sometimes wonder how this drug would affect people who suffer from ADHD….
That’s it, I think I go back to bed….
It felt good, letting it all out yesterday. I was sitting in the very inspiring waiting room, a space without daylight, filled up with dirty orange chairs. Every optimist would get depressed in a context like that. The only ray of light was the free wireless internet, which I used to kill the time.
When you are low, the only way is up. And I can say I start to feel a little better. The worst abdominal pains are getting bearable, my fatigue is getting better and I did sleep rather well the last few nights. The only thing that bugs me is cramps in the strangest places. Inside my hand, on top of my foot. This I hadn’t experienced so far.
The checkup yesterday was all that could be hoped for. Excellent labs, make sure I can proceed with my high dose (25mg) Revlimid. Next checkup in two weeks.
 Revlimid 25mg
Most of the time I’m able to look at myself with some distance. I write about nasty things, but I always try to end it with a positive twist. This is more pleasant for people who try to follow me. There’s a danger that all thing are not like they really are. Today I’m going to change that habit. It all really sucks!!! Not only the fact that the ground has gone from underneath my feet, that I have to start with a new round of medication but just as bad is the way I feel now. It’s hard to explain. As soon as I eat something, it feels like knives are playing a funny dance inside my guts. On a regular basis I have these enormous blasts of sweat and I can only use my energy in standby modus. The days with dexamethasone were absolute horror. Sleepless nights or sleeping pills. Eventually I chose for the latter, but it feels so unnatural…The Revlimid is an absolute killer for my condition and I need to go on with it for a long time. Dear people, life sucks.
It was “nasty medical tests” afternoon. It all started with a bone marrow puncture and bone biopsy. For most of my fellow myeloma buddies it’s a well known story. After anesthesia of the outer cortex a small hole is drilled in the hip with Jamshidi needle. Then a sample of bone marrow is sucked up and after that a piece of bone is sculpted out with a turning movement. All of this material is sent to the lab for further investigation.
Then it was MRI time. 75 minutes in a little too small solarium where you are exposed to extreme noises, tied to bed that is a little too narrow. I’m lucky that I not claustrophobic and that I’m able to let it all pass quietly. The torture of Skyradio is not the worst part of this ordeal. At least I had time enough to figure out how to escape Amsterdam with the least chance of traffic jams. Thursday I will have some results. One thing is already good news: The blob on my shoulder is already shrinking…. That’s what it’s all about!!!
 Bone marrow puncture
I started today. I just took my first pills. Dexamethasone 40mg and Lenalidomide 25 mg, accompanied by a Proton pump inhibitor and blood thinner to prevent DVT (deep vein thrombosis). This is strong medication in high doses. My experience with dexa were not very positive, it makes you hyper and it can cause mood changes. To be sure I asked for some sleep-medication, just in case I bounce up and down in my bed at night. This Friday there will be a number of investigations. An MRI and bone marrow biopsy are planned already. We will see what´s necessary otherwise. The blob I wrote about a few days ago is probably a soft tissue plasmacytoma. Sid from New Zealand commented about that.
I am very content that everything has been arranged this quick by the medics. Because when something is wrong, all you want is action, ASAP.
 Scheme
My right-shoulder has been troubling me for a long time. In February I asked my hematologist to check my skeleton status that was made in December 2009. No problems visible, so I pay weekly visits to my physiotherapist since march. There was not much change for the better, I took diclofenac, didn’t help much either. Tried to live with it. Try not to use my arm, careful with the purse in my back-pocket, and dress carefully.
In the past weeks a blob on my right-shoulder developed. First I didn’t notice, but these last weeks it showed well visible.
In short, I always thought that myeloma could hurt your bones, but blobs that could occur, soft blobs, I wasn’t aware of. On Monday I’ll be told what my treatment is going to look like. Probably Revlimid with dexamethasone. By that time I have been pill-free for almost two weeks.
The graph was going up as well… time for action!!!
 August 5, 2010
From today no more pills (for the time being). I can stop my daily doses of Broxil and Zelitrex starting now! That’s nice and I’m going to enjoy it to the full, cos’ you never know how long this pillsilence wil last. For the results of my m-proteins I will have to wait a while. I hope I can show a nice graph in the days to come.
 Empty
Tomorrow we will leave this lovely place behind. From our newly recruited camping friends we will part with sorrow in our hearts. Next year again? We shall see…..
 camping friends
Funny country, France. At least they are not too difficult with their coke industry….
 Coke industry
We brought everything, didn’t forget a thing…. But when it was time for a shave…..
 Brought everything, but....
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About me 
My name is Sander van der Pol, born in 1951. In august 2006 I was diagnosed with multiple myeloma. In my blog I write about my life with MM. I would be happy if you leave a comment or an email. To your health!
sander@sandersblog.nl Counter Number of visitors since 01-01-2010:
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