Archive for September, 2009

30
Sep
09

Some News

TB has decided to not do radiation after all. See this post for information about that. He contacted the doctor’s office and explained that unless someone can tell him what grand benefit the radiation will give him, he’s done. They couldn’t, so no more radiation.

Since that post it’s been an up and down ride. Nothing drastic, well, other than the knee seems to be getting worse. If you’ll recall, the end of the right femur has what looks like a bite out of it (see my drawing below). The thought is that the ‘bite’ as gotten bigger. So TB has an appt next week to have an x-ray taken to see how it is. Pardon the drawing but at least it’s in flattering colors.

IMG_0001

What scares us both a bit is if he does have the surgery to replace the femur, how in the world will he get around our house? We have a 1953 rambler that just isn’t set up for someone on crutches and definitely not for someone in a wheelchair. But we’ll worry about that when the time comes, something will work out.

One of the other reasons he is uncomfortable, other than the obviously chewed bone parts, is that because the cancer has metastasized to the bones, that means a lot of the calcium that the body automatically makes on its own is going into his bloodstream, rather than back in the bones where it belongs. That can cause fatigue and other not so great side effects. But he’s pretty brave, or putting up a brave front. He did say last night that if it weren’t for me he would have died by now. He didn’t elaborate. I didn’t ask. If me being here to prod him along and not give up and do what the doctors tell him puts me on a pedestal, and he likes me there, who am I to argue? I’m just doing what I think I’m supposed to do. 🙂

Speaking of which, calcium, that is. The oncologist called a few minutes ago and said that TB’s calcium level has gone down and he thinks it’s from the new cancer med he’s been on, Afinitor. Therefore, TB doesn’t have to take Zometa again UNLESS the level goes back up. That’s great news as TB doesn’t care for the side effects of Zometa. Whoo, hoo!

TB left today to go visit some friends of his for a couple of days, I helped him pack and bring stuff to the truck to save him from walking too much. I’m glad he went, I think it’s good for BOTH of us to have other faces to look at for a while. 🙂 He gets the fun faces, I get faces of my fellow students. Well, that’s not all bad. Frankly, it can be quite amusing and sometimes astonishing. Have you seen what inner-city kids wear to school these days? Oy.

Thank you to those who once again have shown me so much love and support. I sometimes don’t feel I deserve it, that I need to be strong as an ox and just get through life. But I know better. So my heartfelt appreciation goes out to you all.

p.s. Cinta – I received your lovely card, thank you, thank you, thank you! Your timing is simply impeccable – as usual. You made my week with your good wishes. Big hugs and love to you. xxoo

09
Sep
09

We’re Hanging in There

An individual left an anonymous comment on this blog stating he (I’m using ‘he’ for simplicity sake) felt I was out of line sharing TB’s and my thoughts, feelings, decisions, treatment, you name it – he slammed me – big time. He also said I was too blunt, too forward and I should tone it down.

Well, Mr. Anonymous (you couldn’t even leave your real name or email address, what does that say about YOU?), that is the entire f-ing point of my blog. Pardon me if my outlet for my stress is sharing and finding support by doing so, and in case you hadn’t noticed, I never mention my husband by name, I never mention our state, city, nothing to identify us. In fact, shame on YOU for trying to make me feel bad. Guess what? It didn’t work. It only made me more determined than ever to continue to post about our experience and share it with whoever wants to read this blog. If you don’t like my blog then go away.

Okay, enough of the idiot dude.  I deleted his comment, not worth wasting space. 🙂

Just so you all know, parts of today’s post may alarm some people but that is not my intent – as I stated above about the dude who left the comment – it’s my outlet and by association it’s TB’s outlet. We’re dealing with things our own way, yet to others it may be unthinkable (such as TB’s request to be cremated and not have a standard funeral, more on that later).

Anyway, since the last post on Aug 27, TB has had two drips (saline, I believe) to help re-hydrate him and the doctor convinced him to do another dose of Zometa to hopefully help with the side effects of the calcium in his blood stream. Both were successful in that though he’s somewhat tired, but he is eating and moving about which is a big improvement. His knee is still bothering him but it really always has. TB and I just talked a few minutes ago and he said he’d rather have just the knee hurt than his whole body. So it’s a matter of deciding what’s the lesser of the evils? Take Zometa and feel better all around with a bum knee or not take it and feel like crap all over? Hmmmm.

One of the things the doctor wanted done after the last check up was an MRI on TB’s brain because of the advancement of the other metastases (spelling ?) in his body (the spine, his skull, his ribs, the lungs), plus we hadn’t done one in a long time so it was a good idea to rule any problems out.

Unfortunately, that’s not the case. He had the MRI on Tues or Wed of last week and the oncologist called on Friday and said that there are three spots on TB’s brain that the cancer showed up in from the MRI. Actually, I don’t know if they’re IN or ON the brain, either way the oncologist said they aren’t affecting any brain function at this time but he wants radiation done asap to prevent anything from happening. Silly us, we thought it was going to be one treatment. Not so.

Today TB had the second of 21 radiation treatments that he’ll get at the hospital to treat the brain spots (I just don’t know what else to call them). After that there will be more treatment, a second treatment that is a slightly different approach to the radiation than he’s getting now but I don’t know for how long that part will be or what exactly that means. I wasn’t part of the conversation with the doctor as I was not home.

TB said yesterday when he told me about all this (the number of treatments and future treatment) that he isn’t going to do the second part, just let him die already, he’s had enough. He’s angry, he’s upset, who in their right mind wouldn’t be? I support every single decision he makes regarding his treatment because it’s HIS life, HIS body. So if that’s his decision, to not continue with treatment, I’ll go along with it. I may not like it but I understand it at the same time. Why be in a lot of pain or so fatigued you sleep 3/4 of the time, due to the treatment?

Again I bring up quality of life, he can’t DO much of anything. As for treatment,  the ONLY thing any treatment does for him moving forward is extending his life just a little bit more. But how much time is that? He said earlier today that if the doctor said hey, we’re thinking this should extend your life a whole year – then he’s on the program, he’s there and he’ll take the treatment (even though he’s likely to lose his hair now and it could be permanent, wow is that going to piss him off, yikes!). But if they think it’s only months, then his thought is screw you, give me the Oxycontin for the pain and leave me alone otherwise. It could be time for a different kind of care so we’re discussing that now (where you meet with a group of people to help you decide how you want to live the rest of your life, team effort, not necessarily even getting chemo, I’m babbling – I’ll do a post on this on a later date).

What’s alarming to some, I’m guessing, is the fact that he may at some point do just that – say he’s done with any form of chemo or radiation, just give me pain pills and leave me alone. People think that when you have cancer and you fight it, you win. Not all cancers produce winners. Kidney cancer is proof of that – I’ve said it before and I’ll say it again – kidney cancer is evil, it’s sneaky, and diagnosed after it starts to metastasize, will likely kill you. We were doing okay until it hit more than the bones (that being the brain) but that’s kidney cancer. It will start to attack your major organs  – liver, pancreas, heart, lungs, bones, brain and of course, your kidneys. Fortunately, he still has one working kidney that’s in good shape (go single kidney!).

The bottom line is he’s so tired of the treatments, he knows nothing will cure him, he wants to give up but he doesn’t because of me. I want him to let go when he’s ready and if that means sooner rather than later because it’s what he wants, then so be it.

In the next month or so we’ve got our homework cut out for us so that these things are done before year’s end. Basically, it’s a to-do list that we’ve been putting off for a while. Kind of hard to address these things but reality is what it is.

  1. Contact our legal service for an appointment to put together a living will – with specific health directives such as DNR (do not resuscitate) – for both of us.
  2. Make me power of attorney for him.
  3. Register with the cremation society and pre-pay for the service ( He will not be having a funeral, he will not be buried anywhere, he wants his ashes put into our fire ring in the back yard and I’ll plan a party to celebrate his life and of course, have a great campfire, per his wishes.)
  4. Add my name to his bank account (if it has $50 in it when he dies I’ll be lucky – so says TB – wink!)
  5. Make sure my name is on any document as a beneficiary or to share title that has only his as an owner, otherwise probate becomes an issue. Did you know that that in some states just because you’re married doesn’t mean your spouses assets go to you automatically?
  6. Check into what medical insurance we’ll have starting in 2010 when my severance is done.
  7. Check into the process of moving my 401K once severance is done and my retirement plan funds.

I think that’s it for now. Let me just say that none of these decisions or comments are easy to make. I may appear to be a bit clinical or too frank or maybe even seem ‘flip’ about things in my posts or when talking with family and friends about our lives now, but you know what? One develops a way of dealing with crap in life. Especially super horrible crap like cancer. That’s why this post is called “We’re Hanging in There”.  That sums it up because we’re doing okay, not great, but we’re dealing with the hand that’s been dealt the best way we know how. And right now? It’s time to put in a load of laundry because that doesn’t get done by itself (sure wish I could figure out a way that it could!).




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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