Archive for January, 2009

23
Jan
09

Update For Today

No results yet from the MRI that TB had on Tuesday, January 20th.  But we also don’t have an appointment to review the results so I’m not sure what’s going on with that.

Remember I mentioned surgery in the previous email? Well, right from the onset we have a problem and it scares us both.

1. The treatment he is taking makes it difficult for his blood cells to clot very well (this particular treatment only slows the growth of the cancer cells, it will never make them go away).

2. In order to have surgery he needs those blood cells to clot so he’d have to stop treatment for 2 -3 weeks prior to surgery for that medication to get out of his system.

3. Guess what? During the time he’s not getting treatment, the cancer cells will grow and multiply (hey, nothing there to stop them!) and frankly, he could die very quickly.  I’m not being negative, I’m being honest. That’s scary as hell.

4. They don’t think he could even go back on the treatment after surgery because no one ever has once they’ve gone off it for surgery. But if he doesn’t get back on the treatment, he will die much sooner than not being on the medication. Period. My understanding is that by leaving treatment and then going back he would be skewing the data. Which, unfortunately, makes terrible sense.

I think I’m going to go have a cocktail.

Good night.

09
Jan
09

Hurry Up and Wait

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.

IMG_0001

02
Jan
09

Three Steps Forward, Two Steps Back

Damn. Just when we thought we were good to go for a while, TB gets a diagnosis from a specialist about his knee.

The cancer has eaten away at the end of the femur that butts up to the knee. The entire knee AND femur have to be replaced with a metal knee cap (?) and a metal rod. Soon. He sees another specialist on the 8th. He will be incapacitated for weeks after the surgery.

He’ll be teaching me how to use the snow blower tomorrow.

Damn.




I Will Love Him Forever

The love of my life passed away peacefully on February 28, 2010. The fight he put up through this tough journey is truly commendable.

Though I am sad at his passing, I am so grateful for the time I had with him, our families and our friends. The memories of our times together will sustain me forever.

I think this quote, shared with me by a loving cousin, sums up how I feel.

"Don't cry because it's over. Smile because it happened." - Dr. Seuss

My Cancer Hat

I'm a person who hates wearing hats, both literally and figuratively. Now I will be wearing a caregivers cancer hat because my husband has cancer and I need to be strong for him. But I also need a place to vent, look for support and find strength.

Hopefully, this blog will enable me to deal with the process and meet others who are going through a similar challenge.

TB’s Cancer

TB, my husband (TB is his nickname), has kidney cancer, stage 4. He had a kidney and the tumor that was in it removed in 2005. We discovered in September 2008 that it had returned and has now metastasized to his bones, specifically his right femur plus spots on his skull, his spine and his ribs, the inside and outside of his lungs, his brain. He is not curable.

TB was originally participating in a clinical study that would provide him with a treatment that would halt, for an unknown length of time, the proteins from getting to the cancer cells. So in essence, slowing but not curing, the progression of the cancer. There is no question he will die from this, the unknown factor is the 'when' it will happen.

Unfortunately, TB had to be removed from the study as the metastases have grown. He was placed on a new regimen of Aerida and Sutent but that didn't work out. It made him too ill. Now he's on a daily regimen of Afinitor - "Plan C" as we call it. Basically, we're working to extend his life but in a manner that will allow him to still enjoy it and maintain his dignity.

1/27/2010 - At the suggestion of our oncologist, TB will no longer take any cancer medications as the benefits do not outweigh the possible negative side effects a new medication would have. He will be transferred soon to a facility where he can receive rehab, as he is extremely weak due to the pneumonia and inactivity. Our goal is to improve his quality of life as best we can.

2/21/2010 - Frank is now home, we've begun hospice care.

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