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God, I hate that. Hurry up and w ...

Posted Apr 09 2009 7:13pm

God, I hate that. Hurry up and wait. Get here for your appointment which is at 1:20, finally see you at 2pm after you’ve sat in the reception area since 1:10 (you came early because you figured you would need to fill out forms because you’re new to this particular doctor’s office but you didn’t as everything transferred from the other doctor).

Hurry up and wait.

The only thing that made this visit bearable (for me) was the fish tank. It was ginormous. Seriously huge, and lucky for them, very cool.

Yesterday’s appointment for TB was to discuss options for his bum knee/femur that the cancer is chewing on. I saw the x-ray. I swear it actually LOOKS like something took a chomp out of it. Almost right where it butts up to the knee. See the picture at the end of the post.

Not many options to choose from for this problem because radiation doesn’t kill kidney cancer (at least not once it metastasizes), chemo doesn’t kill it either. So to zap his knee would be a waste of money, time and energy not to mention it could mess up the treatment he is on right now.

Option 1:

Insert a rod in the femur, fill the chomped part with a cement type goop and put in a new knee.

Big  Disadvantages - longer healing time than option 2, the goop may not hold and could need fixing again in the future, TB could bleed out during surgery (could do this in either operation but the risk is higher with this surgery), may not prevent the cancer from moving elsewhere in the bone, more difficult to get around at home, could require a wheelchair.

Option 2:

Cut the femur above where the chomped area is and remove that whole piece plus the knee and replace with what is called a tumor prosthesis. Essentially, you replace the cut out area with a new femur and knee. Think of people with a ‘new’ leg below their knee that they take off every night and put on every day. Identical concept except his is inside the body.

Big Advantages - up and walking the next day while in the hospital, no wheelchair, only crutches, shorter healing time than option 1 (4-6 weeks), by removing the entire affected bone there is a smaller chance of any remaining cancer to exist (**see my comment below about this particular advantage**).

Big Disadvantages - TB could bleed out during surgery (could do this in either operation but the risk is lower with this surgery), he can’t drive during the 4-6 week healing process (I don’t drive so that’s a bummer but we’ll figure it all out).

**I don’t think the doctor could actually say this in writing because the cancer is ALREADY everywhere in his bones, it just hasn’t shown up yet though to remove this will definitely lessen it appearing here again - anytime soon.

We both feel that the second option is the way to go. But TB is adamant about waiting until spring or even early summer to have the surgery. He doesn’t want to be on crutches in the winter, too much risk of breaking the bone. Although there’s a risk of waiting to do surgery because he could fall and break his leg. The doctor was surprise by the fact he actually isn’t in pain based on the xray - the doctor was sure he should be feeling pain when getting up from a sitting position but he doesn’t.  But that’s also why TB is insisting on waiting. With that, the doctor said fine but TB has to have a monthly MRI to see how it’s doing. Since we have no idea how long it took to get to this point, the MRI’s will actually help to see how fast it’s progressing. We may not make it to spring, we’ll see.

TB’s doing okay with this so long as he can put it off until warmer weather but I’m kind of freaking out because I keep waiting for the next shoe to drop. As noted in a previous post, we sure didn’t see this one coming. I just keep thinking there are more problems to come. Right or wrong, that’s what I’m thinking. And it scares me and it pisses me off and I get so frustrated with the ‘I don’t know’s’ from the doctors.

But as the wonderful new friend I just met online told me in an email:

“Ask as many questions as you are able, knowing of course that they won’t be able to give you answers to some of them and you may not like the answers they give to others.”

I know she’s right. I just don’t want to settle for that, isn’t that what doctors are for? Give you all the answers? I’ll figure out a way to deal with the unknowns, I know I will. Maybe once I start school I’ll be distracted enough that I won’t worry quite as much. Yeah. Right.


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