Archive for August, 2009

27
Aug
09

2nd Post For Today

The nurse from the oncologist’s office called about TB’s lab results from the bloodwork yesterday, she said his calcium levels are too high (I was at the store when she called, he said they are ‘freaking out’ about the level) so he is going in at 3 for a saline drip to dilute it. She also said that it’s possible the back pain could be from the calcium – he has those spots on his spine – but could be a back twinge. As for pain management she told him he could go into the hospital for that. He said ‘that must mean I’m really fucked’. Let’s pray not.

I’ll update tonight if I know more today but I have school this afternoon so I’ll be leaving about 3:30 and won’t be home until 7:45, update will occur after that.

27
Aug
09

Crying Stuffs You Up

Just when you think there might be a positive light at the end of the tunnel, the  light gets fuzzy. TB hasn’t had any cancer / chemo medications since he became extremely ill from them at the end of July. Over the last 4 or 5 days he’s had back pain. He thinks he may have just slept wrong or maybe bringing the trash cart down to the street tweeked it, who knows. But he’s been taking pain meds and not eating. After 5 pain pills yesterday and only water he threw up. I was honest about it and told him that I didn’t want to appear insensitive but he brought that on himself. It’s bad enough that he’s taking pain pills without food but the fact he doesn’t even want to eat until I literally force him to is exasperating.

I get so angry about that. I understand that it’s hard to eat when you don’t feel good. I do. But what he doesn’t yet seem to understand (even with hearing the same from his daughter) is that the body needs x amount of calories per day just to sustain its systems, to make sure everything is working well and together. Without food you become weak and fatigued. Oh, he’ll say he had a protein drink. I’ll say, how about some toast? No thanks. He says he feels a lack of energy. Well, gee. Maybe eating something will GIVE you energy because you know what? Drinking a 250 calorie nutrition drink isn’t enough. There are some fantastic veggies and fruits that will do that for you.

I told him yesterday that I’m done offering advice on what to eat and said it’s now up to him to talk to his oncologist or his internist to have them connect him with a nutritionist. It’s going to sound to some people that I’m being harsh and appear as though I’m abandoning him. I’m not. He’s my husband, he’s my best friend. I’ll always be here for him. But my emotions are all over the board and this is hugely frustrating to deal with. I’ve decided is that if I’m ready for dinner that I’ll make enough for two and if he is going to eat with me, so be it. If not, it’s up to him to reheat or make something else when he’s ready. I’m not his mother, he’s a grown man who is NOT incapacitated, he can feed himself.

I had a rare breakdown last week and spent about 20 minutes in the bedroom – he doesn’t know this happened – bawling my head off as quietly as I could so he wouldn’t hear me. I was angry with him because of the eating issue, with me having to do EVERYTHING all the time (everything being – laundry, cleaning, figuring out what he’ll eat vs what he won’t – he offers no suggestions, mowing the lawn, hauling the stuff in and out of the truck on our vacation by myself, etc). It’s one thing if I were the only person here and that would mean it’s just what I have to do. It would be part of what my life is. But at this point I just couldn’t hold it in any longer.  I was babbling to myself about different ways to having a discussion with him about all this, while at the same time trying to be quiet and cry and trying to blow my nose quietly. Did you know that’s really hard to do??

I don’t think people who haven’t lived with a person who has cancer can truly know what it’s like to be a caretaker. You get the brunt of their anger, their depression, their everything. You can’t take away their pain or their worries. There’s no rest for either of you. I’m speaking emotionally, of course. I used to think I’d been through some challenging times previous to this but those events were NOTHING compared to what this is like. I even seem to have developed a defense mechanism – I speak very frankly and perhaps too clinically about the cancer and the treatment (or lack thereof) and I wonder if that offends people. I don’t think I care. Put yourself in my shoes for a day. Granted, TB isn’t stuck in a bed – he just spends a lot of time there – he’s perfectly capable of moving to the couch or a chair on his own. He can drive. He can walk. But for a caretaker it’s a constant balance between walking on eggshells and terra firma and it’s damn hard.

Sometimes I feel like I don’t have anyone to talk to about this so I come out here and write. Though I don’t always post what I’ve written, mostly everything gets deleted, besides it’s really to get the crap out of my head so it isn’t THERE anymore. I have certainly been blessed with new relationships as a result of this blog which is so wonderful – Jacinta and Emma (big hugs to you both!) and my former co-worker friend BW has become a very, very good friend because of his own situation. I’m not sure what I’d do without these three awesome people in my life right now.

But I miss my best friends, I want them in my life along with my new friends. I miss R who I know is so busy with work and her own family and the fact we live so darn far apart doesn’t help, I can’t exactly just swing by and say hi, and I miss K, too. I’m sure I’m somewhat at fault about the friendships not being where they used to be, I tend to not call people as often as I used to because I’m afraid they’ll think I’m going to just whine. I wouldn’t, I actually want to hear some happy things that are going on in someone else’s life. Of even if someone else is having a bad day, tell me, distract me, let me help YOU. Though I did catch up with K a couple of weeks ago. I’m whining a bit now, yes, I think I’m entitled.

TB went to the oncologist yesterday (I couldn’t go as I had school) and for whatever reason, the Dr again didn’t handle the prescriptions right. Because of TB’s current back pain (which I pray is not the other kidney acting up and only a back twinge of some kind) he requested a muscle relaxer and another prescription of pain meds. The doctor forgot to write down the dosage amount on the prescription for the muscle relaxer and by the time the nurse realized it, Dr. R was gone for the day. The on-call doctor wouldn’t do anything with it so now we wait on that. TB told Dr. R that he won’t take Sutent or Aerida anymore, it’s just too much for him. So for now it’s an appointment on Friday for scans to see what’s going on and then results next week.

I just read my post and it sure is a ramble of things but at least that means it’s out of my head. For now.

01
Aug
09

Maybe It’s The Weather?

Last night TB had eggs. Eggs! And toast and milk. Wow. Then this morning when he woke up I asked how he felt, he said, pretty good. Plus – now he wants coffee. Yeah! The temp is only in the mid 60’s right now so maybe that’s why. I don’t care as long as he continues to feel better 🙂

I talked to my mom this morning, I’ve completely neglected her all week because of dealing with TB and not wanting to offload on her, but based on what she told me a week and a half ago, I figured she was doing okay. She does have another chemo session coming up on Monday but she’s not worried about it. She told me she started losing her hair last Tuesday. But she’s very upbeat about it (I’m not surprised in the least) and she and my sister went to the cancer center and bought a hat, I think it’s a modified turban/scarf/hat based on her description. Then I asked if she and her husband were still going to have their August family get together, she said they definitely are and then jokingly added that everyone has to bring her a head scarf to get into the party. See? Isn’t she cool? She’s JOKING about this – that’s my mama. I told her that when her hair grows back that we can spike it with some gel – she said she’d think about it.

Well, I need to keep getting ready for our trip, I’ve got the majority of stuff on the dining room table and the floor but need to get to the clothes now (that means laundry as that’s been neglected this week also). We want everything in the truck tonight so we can just get up and go whenever we’re ready tomorrow.

My heartfelt thanks goes out to everyone who has left comments, sent emails, took me to breakfast, and called us over the last week or so. We really would have a much more difficult time getting through this without all of your support, love and advice.

Take care everyone.




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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