We have a full house. Our friends from Denmark, Poul & Kisten and my son Thomas. I’m happy we have room enough in our house, and a nice sleeping place for everyone. On Tuesday we were at the table with eight persons, full capacity. It’s very cosy.
Thomas is already getting used to the time difference. It’s useful when he gets up early, because he works as a programmer for his Australian firm. At 6 o’clock in the morning he can have meetings with his co workers because it’s 8 hours later over there. So far it goes smoothly.
Poul & Kirsten have been working in the garden and it looks wonderful. This is a fantastic birthday present. Groomed roses, trees and grass and all kinds of things that look terrific.
On tuesday I go to Amsterdam for my chemo. My platelets are just fine again. Let’s hope that they stay that way and that the RVD-cure (Revlimid, Velcade en Dexamahasone) is effective. We’ll keep our fingers crossed….
These are turbulent times. A new king, liberation day, Ajax soccer-champion. It’s almost too much. But today was a very special day.
My son Thomas, who lives in Australia, has arrived to stay for a yet undecided period of time. My daughter-in-law will follow in two weeks. They can both do this as they have jobs that allow them to work from anywhere. This morning we all had breakfast together. Very special. Today was a gorgeous day in more ways than one.
Lastly I want to share how happy I am with all the reactions, in the form of comments, emails and so on. This really has provided a lot of support for us all and I am thankful for it. It gives my blogging these last few years an added dimension. I never would have figured it would come to mean so much to me. Thank you!
Next week I will be 62. This is usually a day to look forward to. This year I will let it pass, my birthday. This doesn’t mean I will not enjoy certain elements, but my truth is heavy. Two weeks ago I’ve asked for my prognoses. People who have followed my blog know that I have a reasonably positive character. Maybe the tone I used was even a little on the merry side. But the close reader must have noticed a more serious tone in this past year. Especially since this summer, the options seemed to be rapidly diminishing. Agents, that seemed to work lost their effect. New products were not available or would probably not be effective anyway. In October they found out that my myeloma had mutated to an aggressive form for which there is no remedy.
A nasty cure of 3 months at he end of 2012 had somehow slowed things down a little, but it was at that stage too hard to continue with. A trial with dendrites seemed like a little spot of light, but this too has appeared not to be successful.
At this moment there is nothing left to do but to accept the unacceptable. After more than six and a half years it seems inevitable. I never thought it would be so hard to write this blog. For weeks I have been thinking if a how to do this.
In the meantime I have received radiotherapy. Much will depend on the efficacy of this radiotherapy. Will I be there to enjoy this summer? Only time can tell.
I will enjoy myself. With all my strength. Like I have done my entire life. These will be difficult and beautiful days. I’m going to cherish them one by one. I will keep writing my blog. Don’t be afraid to comment. I have always felt a lot of support from my fellowbloggers and your comments. I have always been grateful for that.
On Monday I start a combination cure. Revlimid and Bortezomib with Dexamethason. It feels, in spite of the nasty side effects, good to continue. Though even if it works it will be of temporary nature.
My leg is still swollen, hopefully the radiotherapy will be fruitful. It seems to have shrunk some today.
Times are hard.
On Friday we had our last visit to Utrecht.The dendrites hadn’t done what we hoped for. The bi-opts didn’t show any sign of dendrite-activity. Disappointing, but not a a total surprise. On Wednesday the 10th we will be back in Amsterdam with my well known hematologist. My rock, who supported me all this time. Even from Japan her thoughts go out to me. She’s a very special person, who is not only a mayor league doctor, but also a warm and caring person.
My biggest care is my thick right leg. A sort of elephantman rightlegwise that is. The chances of thromboses are very high under these conditions. To interfere directly I started dexamethasone 40 mg, the highest dose for 4 days to start with. People who have experienced this know what I’m talking about. Red skin, heavy sleep-medication, taking care of my verbal communication and 25 typo’s have been wiped out again. Next week there will be a an intake for radiotherapy. We have to see which parts a still available for radiation. Reducing the tumor in my pubic area will probably take care of reducing the fluid that’s compiling in my right leg.
The daratumumab-trial was not an option for me though. The absence of m-proteins in my blood doesn’t make me a suitable candidate for this trial.
Well, heading for Amsterdam next Wednesday. I’m content with the treatment over there.
I haven’t written for some time. The main reason is that it’s not fun to write things that aren’t fun to read. To make the story complete, I will just fill in the missing facts.
Last week, om Thursday the 28th I had a checkup in Utrecht. A standard checkup, draw some blood and a consult. Els has decided to accompany me from now on. I am taking more painkillers lately. And though I love to drive, I can now hand over the wheel if necessary. During my checkup I was asked if it was possible to take a bi opt. We decided to let it happen directly, to get it over with. So they took 4 pieces from the spot in my pubic area.
Last Saturday it seemed that my right leg had become thicker. I decided to see what would happen, but on Sunday it hadn’t gotten any better. So I decided to call my brother , who is a doctor, on Monday to hear if this was alarming. He said I had to take action right away, so we found ourselves an hour later in Amsterdam in the ER. After an ultrasound they established that there was no indication of DVT. Also an infection was not very likely. This Friday we will be in Utrecht for further checks and instructions.
I also decided to stop my work as a web-master for my patients community. It all becomes a little too much. Pity, because I really enjoyed doing this.
The results of my PET-CT scan were not encouraging. The spots had increased in number and size. Not that I was surprised by this, it was as I expected. You can feel your own body and it tells a worrying story. The pain increases slowly, but my pain-medication is still sufficient. It doesn’t mean that the dendrites don’t work or haven’t worked, that’s too soon to tell. We must wait three more weeks, after a new PET-CT scan to see how things stand. Until that moment I will see if the pain is bearable. There is a possibility for radio therapy. It will not cure me though, it will only be used for pain killing. I might do that but for that I will go back to my Amsterdam hospital. This does not look good. Worries worries…
It was a special day today. At 10:30 I had to be in Utrecht for my PET-CT scan. That was sort of a challenge, but we got there right on time! After everything I flew into Bas’ room my blogmate, who was having a Daratumumab infusion. He was there since 8:30. Though it was the first time we were in this hospital at the same moment, I had to run. At 17:00 hours we had to leave to take Thomas en Seona to the airport. After 27 days their stay was really over. They had to go back to Brisbane. On my special request they sent me the picture below. Now we feel a little sad and drink wine. It was sooo nice to have them and we are going to miss them sooo much! Brisbane is so far away! Hopefully they wil be back soon an we’re glad there’s facetime. Have a good flight, Thomas en Seona, you will be in Seoul when you read this…..
While I’m waiting for a positive sign and there is a lot of distraction around me, I must tell you how things are going. Not so good. I’m in daily pain, which is bearable because I take paracetamol/codeine 4 times a day. Since a couple of weeks I also take oxynorm regularly. To keep the plumbing going I also take one or two sachets of movicol. The ain is not unbearable and I can still dive my car (if I take no oxynorm), but I don’t achieve a lot. From the bed to the chair and from the chair to the bed, and behind my desktop fot an hour or so….. That’s about it. A bit of wordfeud on the iPad. Doing shopping is still possible but is quite a challenge. In short, something’s gotta change, because pain all day makes you very tired.
Hopefully I can give some better news in my next blog….
For weeks it had been planned. Little was left to coincidence. But yesterday it was the BIG day! Exactly 10 years since they have been going steady, Erik and Inge got married. It was a small, intimate wedding. My son Thomas and his wife Seona had come over from Australia, so this made the party complete. We really enjoyed everything. It was wonderful to have the whole bunch together and more so to have such a lovely party together.
Tomorrow to Utrecht for the third dendrite infusion….
It was an exiting day last Monday. It was the beginning of my new treatment. At 9:00 o’clock my brother was present in Utrecht. Three hours he has been tied up to the aphaeresis machine to donate his T-cells. In the afternoon it seemed like there were not enough T-cells for the treatment. We decided to head home, but after half an hour we got a call from the hospital. After counting it appeared that there were more than enough T-cells to go on with the show. We decided to turn around and after half an hour we were back to receive the whole treatment.
The T-cells are running