We feel like we've had a busy week and it's not quite over...
Naturally, we are at the hospital every day for radiation. Today was treatment #19, so only 14 are left now - he's on the downhill side of the radiation phase.
On Tuesday, while I was cleaning his exit wound and changing the dressing over Tom's central line the anchor stitch holding the tube in place came completely out. He had a chest x-ray today while we were there so they can tell if the line is still properly placed, and we will make a trip over to the General to see a surgeon on Friday. It's important the central line is correctly placed before his next round of chemotherapy. If the medication were not going directly into his veins, the results would not be pretty - as these meds are extremely toxic. You know if they need Haz-Mat suits to clean spilled 'medicine' up that it is pretty serious stuff!
On Wednesday, the radiation oncologist advised us they had Tom booked for another simulation CT on Thursday, as the team still doesn't feel completely happy with the level of chemo he is receiving. Currently, about 1/5th of his bladder is in the radiation field, and because of that, there are a couple of chemo meds that they dare not give at the same time - because they pose higher risks to the bladder.
They are going to re-examine everything to see if they can modify the radiation field slightly, and keep the bladder out of the radiation area. Then they could consider adding back one or more of these stronger chemotherapy drugs to the mix. Today we went to the hospital about 1 1/2 hours before radiation, so he could get his regular bloodwork check and his simulation CT beforehand. We aren't sure when we'll learn what the team decides. Just when we thought we again knew what was going on. I think we've come to terms with that living in the unknown. Now, I just go where they tell me to go. (Now there are some reading this who may find that hard to believe, but I am not fibbing!)
His blood counts are still good - no transfusions or quarantines needed at this point. However, his energy levels are really low, and he's only been able to attend one class most days. We've both been feeling really tired and I haven't had the energy to post much lately, sorry about that.
We saw a physiotherapist yesterday. Overall, he was pleased with the range of motion Thomas still has with both legs, and recommended some specific stretches for him to maintain that and strengthen his muscles. He thought it might be a good idea if we got some basic in-home exercise equipment. As it's now very snowy and icy in the neighbourhood, it's not such a good idea for Tom to go for walks outside just now. His bone density has really been depleted and he would be at risk for a broken leg if he fell.
That's it for now. Hope you are all doing well. On the up side, Tom is still strong physically and is keeping a positive attitude overall - for which we are grateful. One thing the lighter chemo done is that it's given his eyebrows, eyelashes and facial hair a chance to grow back!
Bless you, and thanks for continuing to check in on us.
Thomas' Mom
