Treatment and Changes

Radiation and chemotherapy treatment began on October 15, 2019 for Dave’s glioblastoma. It took until October 8 for us to find out what precisely this cancer was, which really isn’t that long if you look back on when this all started which was August 20.

The first day was rough as the anti-nausea medication didn’t work to keep Dave from being sick for about 4 hours after his treatment. A call to the Pharmacist and a change of meds for day two equaled success at keeping the nausea away.

Treatments from here on have been fairly normal with no direct side effects or incidents of sickness. Dave has been able to function generally normally during this time and we have been working on getting back into some sort of routine that would allow him to generate a bit of income and feel more productive.

Treatments from here on have been fairly normal with no direct side effects or incidents of sickness

The cold we all caught is slowly leaving the family, but has been much harder to kick than we had hoped. It was the bad hacking death cough that we all caught. Yes, everyone got it, with Dax being the last one to finally come down with the sickness. I am really tired of dealing with this sickness, the cold not the cancer. It’s been three weeks since it all started.

One of the biggest challenges I have found with the treatment is knowing what the appointments are for and having random appointment notifications showing up with no explanation. Appointment listings are coded in a way that doesn’t make any sense to the lay person and we have received no explaining text or key for what we are being sent. Completely frustrating when we are trying to schedule drop-offs, pick ups and the right people to be present for important appointments. Especially since Dave isn’t able to drive.

Getting into a normal routine has been another challenging part of this process. Dave has been feeling generally good, but also has been wanting to re-connect with people he has lost touch with. As such he has become more active on Facebook and in visiting with people, which of course takes up time and is a bit unpredictable. There has also been getting everyone else into sync with the schedule too, but we are managing to get there now.

At the end of week two of treatment, on the weekend, we noticed a new symptom, which was a facial thing that we had never had before. The right side of Dave’s face would not function properly. He had very little control of the muscles on that side of his face, if any. It kind of mirrored what you might see in someone who had a stroke and lost function to one side of their body. No stroke here, thank goodness, but it was determined that he had some swelling and had to go back on steroids.

I am proud to say that even with the swelling Dave is doing well enough that he was able to advocate for himself to stop the doctor from prescribing the maximum amount of steroid that he could (16mg per day). So we started with 8mg per day and noticed an improvement within a few hours of taking the first dose.

I am proud to say that even with the swelling Dave is doing well enough that he was able to advocate for himself

The good thing is that we know what to expect now that this is the second time we are dealing with steroids and have put a few strategies in place to ensure that sleep doesn’t become an issue which in my opinion caused most of the problems the first time, and we have been doing fairly well this time around. Patience is key, which I need to work on.

We are now nearing the end of week 4 of treatment. The steroid has been reduced to 2mg per day to see if that will handle any swelling issues. Dave has finally been able to settle into a better routine at home which has allowed him to start doing a bit of work a few hours a day. Definitely a boost to moral for both of us. The end of treatment is in sight with the last one being November 25.

Now if only we could kick whatever illness has infected us. This week Seth got sick again and is now on his own treatment plan for what appears to be cold induced asthma (or something). Started that set of yuk (and it really tastes gross causing him to gag), but seems to be working to help him get rid of the cough that sounded really bad and was thought to be pneumonia, and isn’t thank goodness.

Oh and he has had to shave…got too scruffy…Yep still growing hair!