Starting chemo tomorrow? maybe...

This may get long so bear with me.

Rion is to start his new, higher dosage of chemo tomorrow and he had his final blood work done this morning at the medical oncologists office. His platelets are still doing fine (the one count that we have struggled with) but now his white blood cells have decided to creep down lower than they have ever been before. Going on the print out given to us by the doctor, the lowest number on the range of "normal levels" (for people who are not on chemo) is 4.8- I am not even going to pretend if I know what that means (parts per million, parts squared, etc) but I do know that his white blood cells are at 2.3 and basic math tells me that is less than HALF of the minimum. It is also interesting to note that previously his lowest # was 2.9 and that was just last week so it would appear they are trending down. My usually logical brain tells me then that it is NOT a good idea to start taking MORE of the medication that lowers the white blood cells...at least not tomorrow when we aren't sure if 2.3 is where they are going to stay or if they are going to go even lower! The doctor felt it was of some concern because Rion was given a prescription for an antibiotic and instructed to start taking his temperature periodically; if it's over 100.5 Rion is to start the antibiotic. Once again, logical brain tells me that by the time you have a fever then you already have an infection and you are then being reactive instead of proactive. Why not wait to start the chemo until the levels are back up? Will waiting another week really make a big difference in the grand scheme of things? Why not start taking the antibiotic now as a preventative measure?

I struggled for a minute with deciding whether or not to call our oncologist at Duke and see if they concur with the decisions our local oncologist made this morning. Does it make me seem like a Nervous Nellie second guessing the local medical oncologist? But at the same time, we did learn last time we were at Duke that the local doctor had Rion taking an antibiotic that A.) he didn't need and B.) was suppressing his platelets (the whole reason they wouldn't come back up before.) So I kinda feel that it's ok for us to verify with Duke that they are making the right decisions. Rion left a message for our oncologist nurse this morning and is waiting to hear back from her. Often she can be hard to get a hold of so hopefully we get lucky & she calls us back today. Honestly I am not sure what we are going to do if she doesn't. I'm leaning towards waiting until Monday evening (only 2 days behind schedule) to take the new chemo with the hope that Duke will call us back by then.

Why do I feel like there is ALWAYS something coming up out of the ordinary that has to be addressed? I guess that is the name of the game, I mean, Rion does have cancer and that normally isn't a walk in the park. (BTW, it is still hard for me to say he has cancer, it breaks my heart a little bit more each time I say it.) But once we get things under control something new pops up that we have to scramble to fix and honestly I'm not always happy with the fixes.

For example, he brought up this morning that he is still having the partial sensory seizures that I mentioned in my last post. The doctors answer was to prescribe Ativan to take as needed to stop the seizure. There are so many problems with that! First, they don't last more than a few minutes at the most so he wouldn't really have time to take anything to stop it. Second, instead of taking a pill to stop the seizure (reactive) why not increase his Keppra to stop them from happening in the first place (proactive?) I know from doing my own research that more than likely seizure activity will be our first warning that Morton is coming back- if we never stop these partial seizures we might miss out on a very important warning sign in the future. He is not taking any where near the maximum dosage of Keppra and is having virtually no side effects so I don't see why we couldn't try that.

I am not a doctor and I definitely defer to their judgement, I guess I just want more of an explanation as to why they make the decisions they make instead of just saying 'ok' when I don't understand the reasoning behind it. I really, really wish I could go to these appointments with Rion- it is so hard for him to think up these questions spur of the moment like I do and even harder for him to relay EVERYTHING back to me. We had him totally prepared this morning to address the things that have come up recently- he had a list as well as some information on the seizures I had printed out online. But it's the follow up concerns that we can't prepare for that make me want to be there. I end up getting frustrated with Rion when I know it's not his fault and he is doing the best he can. (And please don't think I'm implying that Rion is "slow" or "stupid," we have very different personalities without involving chemo brain that leads me to ask more questions and be more inquisitive than he is.)

So that's where we are, waiting on a call back from the Duke oncologist nurse and unsure what we are going to do about taking the chemo tomorrow. We probably will take it either way since in the end, low white blood cells only mean Rion is more susceptible to infection...and we'll just forget about the fact that he will be at Duke in the hospital (AROUND A BUNCH OF SICK PEOPLE) in 10-11 days. We'll be diligent about taking his temperature and he already filled the antibiotic to have at the ready.

And about the seizures, we'll be discussing that at Duke on the 27th & at the next neurologist appointment on July 6th.

It really could be much worse, I know it could, but I'm still stressed out having to take on so much and keep up with all of this. Cancer sucks man, I don't wish this on anyone!