Friday, February 13, 2015

It's been a while

Clinical trial MLN0128

This update was really difficult to write but it turned out for the best because I ended this trial at exactly the right time to start the immunotherapy one. More on that later. This update is from the last blog to early December when things started to go wrong for me and MLN0128. To tell the truth, things had been going wrong for some time but this was an escalation of disaster.

When people talk about the roller coaster of stage IV, I don’t see it like that. I get the metaphor of the highs and lows but there is no thrill in the rapid decline that precedes the low. I think of it as more like a tsunami that has endless waves that keep pulling you deeper and deeper into destruction and with it are the homes and lives of loved ones destroyed by the pain of losing a mother or daughter or sister. I think this is hardest for the mothers who lose their daughters and are helpless to protect them from the onslaught.

The clinical trial required monthly visits to see the doctor or nurse practitioner and these events were always ones I would really rather miss. Every time I see the appointment reminder on my phone there is a big red “Cancel Appointment” button that I long to click. But I never clicked it and I went every four weeks as required by the clinical trial and would hand back the four pills (carefully counted by the pharmacist) and collect another 30-day supply of 60 pills. I also had a sheet with the exact times I took the pills every day and the glucometer with the readings of the twice-weekly finger prick results.

At my November visit, my drugs were delayed. Apparently, my liver enzymes were elevated. There were a bad few moments. My immediate thought was that liver metastases had progressed to a dangerous level, but the NP reassured me that it was probably “just” a side effect of the drug. An abnormal blood result is a huge palaver. Everything has to be checked against the protocol. It turned out the results were only a level 2 elevation so I was good to go with another month of drugs but needed to have blood drawn in two weeks to check. I am not sure but I think the fact that I had been trying to put some weight back on and consuming about 3000 calories a day might have had something to do with it. I decided to cut down on the 85% dark chocolate.

The doctor visits consume a huge chunk of the day. I had to fast (water only) before the blood draws and that is tough as only a caffeine addict would know.  I always think I should have a flashing light on my car to warn people when I haven’t had my caffeine. I have to leave an hour before the appointments to get there in time and have started to make a flask of green tea for these long days while I wait for the results of blood tests. On this cold November day, I felt like a construction worker sitting in the waiting room and drinking from a thermos cup, huddled in my polar bear hat.

While I was waiting, I talked to another patient who had to come back to get her prescription changed for her opioids because the prescription was for one month and it had only been four weeks since she had picked up her last prescription. She has Stage IV and is in constant pain. I just don’t understand the need for all this bureaucracy. Doctors constantly offer me Ativan and I decline. I never refill my prescription. I just ask for a new one about every 9 months or so, but ¼ of .5mg really works well for mild nausea.

While we were waiting, she told me her very sad story. Her husband was killed in a car crash seven years ago and she still felt her life was bereft of meaning. She and her husband were stopped at a stop street and the oncoming car with bald tires skidded on the icy road right into them. Her husband was killed instantly and she required hospitalization and surgeries. The driver of the car was in the country illegally and had no driver’s license or insurance. He was unhurt.

I went home exhausted and emotionally spent that day but ready to enjoy Thanksgiving break with two of my children who managed to make it home.

I watched one play video games. He has a wonderful way with words and amuses us immensely. He is also very sociable and goes out most evenings.

The other son is more serious. He has a wide general knowledge and it’s fun to ask him about things as you think of them. His ambition is to read the whole of Wikipedia but of course he can’t. He has still made huge inroads and read more than most with a deep understanding. He has an undergraduate science degree and a graduate computer science degree and is rapidly rising in the ranks at Google.

Whenever we have children home we like to go out and eat. I have a few favorites. I don’t make a big deal of whatever is available but some restaurants have nothing that I can eat. A clue is if you see the words deep fried at the top of the menu.

 We love to sit in the hot tub in the evenings and just talk. It’s a communal time where everyone shares what they did and what they hope for. The boys have a beer and conversation is animated.  

The days go so quickly now.

On Thanksgiving Day we went for a 5k run. There were over 8000 people there and it was chaotic. I don’t understand why it is so popular when it is so badly organized. It was thoroughly miserable and definitely tops my worse run experience ever and I have been on some pretty bad ones. It took 45 minutes to actually get to the start because they had no system. The sponsors were United Way which makes me think that if they can’t organize a simple 5k run then what can they organize? They are not on my current list of charities anyway but now they never will be. The highlight was getting home to soak in the hot tub for 20 minutes before I started cooking.

I did go back to have blood checked again two weeks later and everything was back to normal. And so the tide turns and takes a short break before the next wave hits.


1 comment:

  1. I also need a warning system for "no coffee on board, watch out!" I drink mine black, so usually they will let me get away with it when I can have clear liquids... I am always checking WHEN I CAN HAVE MY COFFEE. Hope all goes well on the immunotherapy trial, I am really hoping to get into one sometime soon!