The Clinical Trial is perhaps not the cure for me.

Last week we went to the clinic for our biweekly infusion and to consult with our oncologist. The clinical trial drugs are clearly not working for us, and we will need to change to a different kind of drug. That would most likely be a pill based chemotherapy called Tarceva, which will be used to help control the growth of cancer but which cannot shrink the tumors, at least not the kind of tumors I have. It is of course a bummer that this effectively rules out a cure or, at minimum, a substantial extension of life. The new drug will also have more side effects than those of the clinical trial, but it may, hopefully, allow radiation on my right hip. The bone cancer in the left hip was treated with radiation and I hope to receive similar results on the right hip.  So there are definitely upsides as well. Maybe, and I really hope so, I can perhaps stop taking morphine and get my driving privileges back. Due to the opioids, Bonnie has to drive me around town because  a couple minutes disappear from my life here or there and if that happens in busy traffic that could of course lead to a big mess. We are only two weeks away from the regular 8 week CT scan and perhaps the Oncologist wants to await that test before changing drugs. Meanwhile she ordered additional blood tests to measure testosterone and other hormones. The oncologist also ordered two MRI's which we did on Sunday. One of the brain and one of the hip, and doing those in one session turned out to be a bad idea. I don't mind being in an incredible noisy tunnel for over two hours but being stretched out on a very uncomfortable platform and not being able to move a painful hip for the entire time was not an experience to be repeated. And we may have to do exactly that. The discomfort led to involuntary muscle movements and the pictures may be fuzzy.

While I was updating this blog, the Oncologist called to share the results of the tests. The MRI’s, it turned out, were readable and can be used. There are no lesions in the brain, which is excellent news, but the bone cancer in the hip is growing and an intervention will be necessary. An appointment with the radiologist has already been made for Friday, which shows again that if you do get sick, do it in the USA with good insurance.  All hormone levels were extremely low, and totally out of range, which probably means that the clinical trial drugs have shut down the pituitary gland, or hypothalamus (hypofyse in Dutch),  which is the gland that orchestrates  the Thymus and other glands to produce the right hormones. Without testosterone, it is no wonder that I am losing my butt and other muscle mass faster than snow in the desert.  Watch out Ladies. A generous supply of Testosterone replacement is on its way, as well as steroids and other drugs to reverse that situation, and I hope to be gaining back some of the weight I lost.

One of Jan's little projects in Mortsel Belgium

That was perhaps a little too much whining.  There is enough to enjoy in life: Jan, our good and lifelong friend from Belgium and former colleague decided to come and see us in Oregon. Jan is probably the most creative entrepreneur in all of Belgium and certainly the most creative entrepreneur I know. I am always surprised how he comes up with new money making schemes ranging from fast moving consumer goods, TV entertainment, rebuilding a castle into retirement units, or renting apartments and student rooms, just to mention a few. It was an absolute pleasure to hear all the new ventures.

Jan in the snow at Mt Hood

Jan's brother died of cancer and it was also helpful to talk about some of the experiences he has had. We were able to see Portland and the nature surrounding the city. Just a few days before our Grandkids were floating in the lake, Jan and I were having lunch in the snow on top of Mt Hood, which is
just one hour away from our house. We were able to verify that it is entirely possible to ski in the morning and swim in the afternoon, should any of you need an incentive to visit us in Oregon. Jan, with his 7 ft length, was able to fold himself into the driver seat of the Sisi truck, and that is how we meandered through Oregon in about as much comfort a shrunken Sherman tank.

The travel agency made a mistake in Jan’s booking and his flight actually left a day earlier than we thought. A good thing his daughter discovered that and it was a blessing in disguise because Jan missed a very depressive play in downtown Portland

The grandkids decided that it was time for a camping trip and Camp Oma and Opa was selected for this purpose. This made for a fun weekend for everyone. Nearly everyone. I found Sara early in the morning curled up in a blanket in the library after she was pushed off the air mattress during the night. Fortunately the sun rises early at this time of year and by the time the grandkids woke up, it was a pleasant summer day.

Break between games

The World Cup is a blessing for the oldies with limited mobility. Oregon is the ideal place to live: at 9 AM we have the first match, the second match starts at 12:00 and a third match is at 3 PM Then there is ample time for celebrations from 5 PM onwards. Holland performed unexpectedly well, and in the festive environment you can find Bonnie and I early in the morning dressed in orange, shouting loudly to cheer on the Dutch team. We have appropriate colors for USA and Belgium as well. We root for Colombia but do not have the right shirts. I have a Mexican shirt but cannot possibly wear that because they play Holland next.

The second Dutch game was exactly at the time of the oncologist appointment and I had to call on the support team since there is no television in the fusion room. So the grandkids followed the game at their parents’ house and sent instant messages every time the score changed.

Sara received paddleboards as an early birthday present and she agreed to leave them at the lake house. We have new toys for the lake! Come on over and enjoy the fun and games.