Saturday, June 15, 2013
So......on Tuesday Danny and I saw the geneticist. He was a very nice guy, and very, very interesting to talk with. Danny was bored silly. Of course, he had gone to a sleepover the night before and not gotten enough sleep. In addition, we had rushed out of the house so he hadn't yet had lunch and he was hungry. But I was still embarrassed to have him be so crabby to the doctor.
What I learned - yes, there is a lot of cancer in my family, specifically on my father's side of the family. The great majority of cancer is not related to anything genetic. However, there are a few specific cancers that are passed on through the generations. In addition, there are some families that have a very strong tendency to certain cancers (and not certain others). To put it in other terms, one could say that there is an inherited genetic weakness that makes it much more likely for family members who have inherited the genetic weakness to develop certain types of cancers.
This is called Li-Fraumeni Syndrome, and he thinks that there is a chance that it runs in my family. He was especially interested in cancers that occurred in family members under 45, which would be my sister, my father, and my son. My father actually fits the three criteria for the syndrome. But I am not sure it is as simple as fitting into three certain criteria. They took some blood from Danny and sent it away to Houston, and the doctor said we would have results in about a month. So presumably there has to be genetic proof as well.
Meanwhile, I have to call all sorts of relatives to ask them questions about various cancers various other relatives suffered from, and try to get answers for the doctor.
I am the kind of person who really wants to know things, and deal with them from the perspective of as much information as possible. What help is it to get this information? my son Henry asked. Well, it means my kids all would need to get screened for cancers earlier and oftener than people who don't have the syndrome. Beyond that, maybe not too much. It might make them have some concern for their own future children as well.
It's not a pleasant thing, but I for one would rather look the enemy in the eye and stick out my tongue, so to speak.
However, the doctor did say that sometimes the blood results are not a clear-cut yes or no...which would mean being back to where we started. I am willing to take my chances.
In other news, Danny had an appointment with his oncologist yesterday. He is due to start chemo on the 27th. We had originally been told the 24th, so it is a few days later. He will also need another hearing test (since there is some concern the radiation he has had might have affected his hearing), more blood testing for the endocrine doctor, and an MRI of the brain and spine, with and without contrast. In addition, his sister has an appointment at the same hospital next week to get Botox for her spasticity. Danny hasn't even started chemo and already I feel like I am living at the hospital.
I will probably explain the chemo treatment in more detail in another blog (even though it will probably be TMI). Right now I will only mention that the first treatment entails a cocktail of three drugs (cisplatin, lomustine, and vincristine). Because of the cisplatin, he has to get six hours of IV hydration before even starting the drug, and then it will take six additional hours to infuse the drugs. He will be admitted to the hospital for this (did I mention that I think I should just pack my bags and move in permanently?) for 24 to 48 hours.
All the time we were in Houston, the doctors there would explain things and then ask Danny if he had any questions, and he never, ever did. He would just say, "No," or "I'm fine." This time, however, when it became an issue of needle sticks, he found his voice big time. It looks like he will have to get a drug (similar to one I had to have called Neulasta) which will help up his white blood cell counts. This drug has to be administered subcutaneously. Oh, my, did Danny want for it to be put into his mediport. No such luck - going directly into the vein is not a good thing with this drug. Danny actually asked the same question two or three different ways, hoping for a different answer. I didn't mention to Danny that, if this drug is really like the Neulasta, it will hurt like blazes going in, no matter what they do. I figured it probably wasn't a good idea to say that to Danny, especially because....drum roll, please....he will probably have to get this shot EVERY SINGLE DAY, even Saturday and Sunday. Did I mention that I think they should just rent out apartments on the fifth floor of the hospital to parents? They might as well.
Danny and I are both gearing ourselves up mentally for this. I think he will still have a few days off between now and then. I just hope I won't have to drive Cecily all over the place because I would rather spend time with Danny. He won't be feeling as well as he is now for a long time to come and I want to enjoy it while I can.