Archive for July, 2009

31
Jul
09

Inch by Inch, Step by Step

That’s how things are going with regards to TB feeling better since the last post, little by little he is improving. Since then I’ve gotten him to eat toast, ginger ale, bananas, cold cereal and even a fresh croissant from Patrick’s Bakery. Certainly not all at once, but you get the picture. He stays up to watch a little TV, reads the newspaper and sits in the garage (his turf) to listen to the radio. When I think back to even just Monday – at that time I could only HOPE that he would feel better this quickly. I was even starting to think about how to get our deposits back on the reservations we’d made for our trip up north but now it appears I don’t have to. He still hasn’t taken anymore chemo meds (the Sutent is the only one he could, if he were to) and we haven’t talked to his oncologist – he’s on vacation. And we certainly don’t want to talk to that on-call doctor again, either. For now it’s really just getting through the reaction of the meds leaving his system and he’s not interested in talking to the doctor now anyway. Neither am I.

He’s still mighty tired. On Wednesday we were going to go get his Rx for his pain medication from the clinic, then go get his glasses, then drop off the Rx on the way back home. We never did get the glasses that day, he said he was too tired. So after just getting the Rx and coming home, he was exhausted and slept for a solid five hours. Yesterday, he somehow found the energy to go get his glasses. That did tucker him out a bit but not like the day before. When he got back he didn’t take a nap right away – I got him to eat a banana and a nutrition drink first, plus he read the paper. When he did nap, it was only about 2 hours, then he got up and watched TV with me and actually stayed up until 10:30. He’s getting into the Chelsea Lately show, it has quirky humor so it definitely suits him. And if it makes him laugh?? I’m all for it.

I had breakfast with a good friend of mine yesterday morning, BW, and it was amazingly cathartic. He’s been through the cancer process with his partner and so is very familiar with my feelings and reactions to certain situations as well as how TB sometimes reacts to things. He was aghast that the oncologist never gave us the anti-puking Rx ahead of time, to use if needed. TB’s former wife said the same thing, we should have had that on hand, just in case.

Another thing we talked about was dying, specifically, is TB afraid of dying? I thought that was a good question and my answer to BW was that I don’t know for sure but my best guess is that he wouldn’t be afraid of dying so much as pissed off that the cancer didn’t come when he’s older. I already know he’s ticked that it didn’t come 10 years from now, hence my response.

Last weekend TB had told me that he must be the biggest disappointment I’ve ever had in my life. When I told BW this at breakfast, he knew exactly what that felt like hearing it because his partner did something very similar. I never took it seriously because TB was in pain, he was pissed, he was (and still is) sick of being sick. And he doesn’t like being taken care of (typical male, maybe?). Has to be the one to have all the answers. So I think it’s hard for him to accept help from me, though he’s getting used to it, and that’s why he said that. Either way, I’ve told him that we’re both such odd ducks that we’re the only ones who could deal with us, so he’s stuck with me.

I’m just so glad that I’m not working right now. To think of him being home like this while I’d be at work just tears at my heart. Speaking of work, the old job, that is. I found out from BW that guess what?? The areas we – the now unemployed – supported in the company still haven’t gotten it together in terms of having the outsourced employees do everything we did, which is why we were laid off, the responsibilities were going to India. They’re actually trying to post positions that have a surprisingly similar job description we had but no, no, no, they tell HR, they’re not the same. Doesn’t sound like they’re being too successful and therefore, others are being overworked. Huh. Go figure. I told BW that even if they offered me twice my former salary, I wouldn’t go back. I’m done with that and so is TB. He’s been through all that stress with me and who needs it anyway? I’m looking forward to our future.

TB just got up and has a great idea. He couldn’t sleep and so was doing a lot of thinking. He’s suggested that while we’re up north this coming week, we should try to find a cabin to stay at for a few days the week before I go back to school.  Once I’m back in school I’ll be going four out of five days so we won’t have this opportunity for awhile so I like that idea. I think I’ll go do a little preliminary checking online now to see what I might find for us to look at up there.

27
Jul
09

Big Sigh

Much has happened since the last time I posted. Not all good, not all bad. With regards to my mom’s cancer, in addition to the numerous body scans to determine where in her body the cancer had spread (if anywhere else), she also had a bone marrow biopsy and a lumbar puncture. Luckily, it turned out to be localized in her right cheek. So far she’s had a 7 hour chemo treatment and proclaimed it ‘not bad’ but tiring. She still has her hair and she didn’t get pukey, but she did get an odd metallic taste in her mouth for a while. She has some lab tests coming up and another chemo treatment on Aug 3. It’s possible that this might actually take care of it.

Wow. I’m still flabbergasted by her diagnosis and so happy for her. I just can’t imagine this taking her life. That’s my mom, she’s the angel, she’s the tough one, she’s the funny one, she’s there for everyone. She can’t leave yet.

So that’s the good news, yes? Now for the not so great news. Two things. Two days after I left that last post I found out that one of my best friends has melanoma. She found a mole on the back of her knee, thought it was a wart, got it checked out and lo and behold, it’s cancer. So she’s still in the process of determining how to treat it. We’re all keeping our hopes up for her.

As for the hubster. This new change of medication is simply and totally awful. It’s bad enough that the Aerida (for the bone metastases) has horrible side effects but when combined with the equally nasty side effects of the  Sutent ( this replaced the cancer medication he was on when part of the clinical trial study) it’s just……plain…….wrong. These medications = zero quality of life when you feel like this. I’m angry, can you tell? Our oncologist was quite blase about the side effects when we first talked about starting them, so we didn’t think a whole lot about them. He also said if TB needs it he can have some anti-puking medicine. Why the hell wouldn’t you just give someone the Rx at the beginning so that if they need it, they can go get it? Instead, they have to puke all weekend long because you can’t get an Rx on the weekend.

Since Friday night, TB has eaten maybe a total of 6 saltine crackers and water. That’s all he’s been able to keep down.  When I called the doctor on Saturday night to ask what I can do to help him, he said what TB is experiencing is typical side effects of both meds and if TB gets dehydrated, just bring him to the ER. Otherwise, he just has to get through it. I was livid when the on-call dr said that. Just livid.

So – when TB was part of this great trial study, he was damn near treated like a king. Now? He’s a pauper. They barely acknowledge him at the clinic, they don’t respond as quickly to phone calls as they did before. Trust me, this is not our imagination. We’re thinking that since they know he’s not going to live, he’s just being given SOMETHING to hopefully make him last longer and they’ve got other people to deal with.

We’re not stupid. We know that TB will die sooner rather than later due to the advanced stage of his cancer. However, when you are NOT curable, don’t you think it’s better to have quality of life even though you will die sooner? Instead of taking meds that make you dreadfully ill? It’s one thing if you know you have a higher probability of surviving, as many breast cancer patients and lymphoma patients do, to suffer through those side effects because your likelihood of survival is so much greater. But when you know you will die (with his advanced stage his five-year survival rate is 5%), that there’s NO cure, how dare you say ‘well, he just has to get through it’. Well, no. He doesn’t.

Today we called the doctor and requested an anti-puking med. TB told them he is done, that he doesn’t want to take anymore of the Aerida and if they’re going to push him take the Sutent, they need to be able to explain how the advantages of taking it are greater than not. As TB said – clearly I’m not going to be cured so I need to have the ability to live my life as normal as possible and that can’t happen being stuck in bed for days on end.

I’m sure there are those who would say, hey, he’s got a 5% chance of surviving, he should be gunning for it, he should be thrilled, at least it’s SOME chance, he shouldn’t give up. Well, he’s not giving up, he’s trying to live his life as best he can and feel okay, and frankly, he felt much better during the time period he wasn’t on any meds at all.

Over the last 8 or 9 months his body has deteriorated – whether directly from the cancer or some side effects of the drugs, I don’t know. Probably a combination of both. He has lost so much muscle mass that his arms and legs are just gaunt, he’s lost somewhere between 20-25 pounds, he has no strength. And he should stay on the meds? I don’t think so. He keeps saying he just wants to get one more Christmas, I want many more than that but when he’s ready to go, I’ll be there. To tell him it’s okay to let go. He’s stubborn, you know? He’ll want to hang on for me but  I won’t let him do that. Okay, need to get away from that tangent, I can’t go there just yet though I know it’s not that far off.

I just got back from the pharmacy with the anti-puking med, cross your fingers that it will help. He wants to be in good form for going on vacation on Sunday. We’re heading out of the cities for a week, getting out of ‘Dodge’ as the saying goes. I see many games of cribbage, short walks, beautiful views of Lake Superior, and lots of time relaxing for an entire week. Boy, do we need that.




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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