Archive for October, 2008

25
Oct
08

Mental Acuity

Last night TB was on the phone talking to a friend and mentioned to him that he noticed mental acuity issues with himself over the last couple of months. So unfortunately, I was right in having noticed what I thought were issues as well (an example today was saying instrument instead of ornament).  TB said he can handle the kidney cancer and the fact it’s moved into his bones but it really pisses him off that he thinks it’s affecting his brain because he hates not remembering stuff, he’s proud of the fact that he knows as much as he does and he does NOT like to rely on people. I know we don’t have proof but I will be more surprised if we find out the cancer has NOT spread to his brain than if it has. He’ll start a separate treatment for the bone cancer on Monday, a medication called Zometa. I’ll update about what the MRI shows for the brain as soon as I know.

I know people will say and people have said don’t search the internet for info, it’s too overwhelming and each person is a different case, you won’t know what to believe, etc. I agree in part but I still have to look. That said, I did.

From the website:

In advanced kidney cancer, metastasis occurs when the cancer has spread from the primary tumor (in his case it was the kidney) to other parts of the body. In most cases, when kidney cancer metastasizes, it spreads to any of the following:

  • the bones (where his has now spread)
  • the brain (where it MIGHT have spread)
  • the liver
  • the lungs (where his has now spread – to the outside of the right lung)
  • other parts of the kidney.

The prognosis is not good for people who have metastatic kidney cancer. The five-year survival rate is less than 5 percent if the cancer has spread to other organs and is only 5 percent to 15 percent if the cancer has metastasized to the lymph nodes.

I’ll ask on Tuesday when we’re at the dr’s office for his treatment about the prognosis and update it when I know.

Sorry, can’t think. Done for today.

24
Oct
08

Who Said “What Next?”

Someone must have, dammit. We just got a phone call. TB now also has bone cancer. EDITED 10/23/2009 – He does not have bone cancer, the kidney cancer has metastasized to his bones. I didn’t realize a year ago what the difference was and I want this ‘diary’ to be accurate. So I’m retaining what I had written but adding this note. We haven’t received the results of the brain MRI but as with not getting results of the bone cancer scan in which we thought that no news was good news, we’re betting he’ll have it in his brain also. We thought that because he’s scheduled to start treatment next Tuesday that all was clear. Huh. Never ASSUME. Now he’ll be undertaking two kinds of cancer treatment (could be three if there’s brain cancer). I have no details other than he has it and it’s everywhere.

I’ve tried to ignore something I’ve been observing for a couple of months, but after hearing about the bone cancer and not yet knowing about the brain cancer, I bet he probably does have it in his brain. I’m not trying to put the cart before the horse, he may not have brain cancer. However, what I’ve observed is that over the last couple of months he sometimes will say a word when meaning another. Sometimes the word would be darn close (example would be tame instead of time) but sometimes not. I was correcting him but then I stopped when this all got so intense. Maybe the word twists are nothing but there are so many instances of this that I can’t believe it wouldn’t be related. It’s not nerves, TB doesn’t get nervous. He also still has a very clear mind when he wants to discuss something he’s passionate or pissed off about. Religion, taxes, politics. He’s very clear about all that and knows of what he speaks. It’s just these instances maybe now have an explanation.

A very dear friend of mine stopped over last night. We haven’t spoken in months and I finally sent her an email and said you know, my summer has really sucked because of work, TB has cancer and I’m getting laid off. I hope you understand that I didn’t purposely try to be a turtle during all of this but was limiting it to just a couple of people – too much embarrassment about work, etc. She showed up with this big plant from Bachman’s, looks like mini cherry tomatoes but that are orange and a HUGE bag of food from Patrick’s Bakery. Six different quiches – we wrapped them in foil and labeled them and put them in the freezer. They’re just the right size to split between two people (about 6 inches in diameter and maybe 1 inch thick). Since TB doesn’t have a big appetite this will be a perfect thing to pop in the oven. I never even thought about doing something like that for someone. It totally takes a load off of my mind because TB can just turn on the oven, pop in a quiche for 10 mins and eat. Plus salads. I was floored. After Wed’s news at work even I wasn’t thinking about food for a change. Other than to push HIM to eat.

Well, that’s enough crap for today. More when I hear it.

22
Oct
08

Changes

Boy, oh boy. When it rains it pours, doesn’t it?

First of all, some good news. TB was in a really good mood yesterday! He even agreed that yes, he needs to eat more and was thinking about buying some protein shakes (Ensure – Chocolate,not the Berry one). He also spoke with a number of his guy friends and that helped his mood greatly.  So you know what? I’ll be telling them to keep up those calls – if it changes his mood this much then we need to keep that going. His buddies don’t coddle him so I think that will be a positive thing for him. They all give each other grief. Guy thing, I imagine.

Now some not good news.  I found out today that my last day working will be December 19th (as of that date I will have been there 24 years, 8 months, 3 days). They’re laying a lot of us off.

Would you believe I feel relieved?? I truly see this as a silver lining in the dark cloud of lay offs and maybe that’s naive of me, but I don’t think so. The severance package I’ll receive will allow me to go to school next year which in turn will help me – hopefully – get a job. The severance package includes medical as well so that’s a huge blessing considering everything that’s going on right now. In addition, this means I’ll be able to be here at home with TB. Of course, that also means that I may be blogging more BECAUSE he and I will be together MORE as that will definitely change the dynamics around the house. But you know what? If it means more time with him now even with being moody (both of us) and him sick, I’m all for it.

So it’s time to start figuring out what I want to be when I grow up and then find a place to learn it at. I think what would be ideal is to find something on-line. Would really make my life more flexible when I need to be here with TB.

To Julia – Please feel free, if you haven’t already done so, to share this info with your mom and whoever else in the family you’d like to. And remind them that me being the stubborn one I am, I’ll make sure we get through this. Might have some hiccups along the way, but I’m nothing if not tenacious. 🙂 Take care.

20
Oct
08

It’s So Hard

It’s really freakin’ hard to be in a room with someone every single night and that someone is just gazing off (well, in the direction of the tv but trust me, he’s not ‘seeing’ the tv), doesn’t respond to comments or questions. I don’t know what to do. He also doesn’t eat much at all. His idea of food for a day right now is a pb&j sandwich, a fat free yogurt and a glass of milk. Yeah, that will help to sustain the 230#/6foot guy. It’s not the time to lose weight, pal. Cancer eats at muscle – beef it up. Grrr. He doesn’t get it. Or doesn’t want to. Even though he’s not hungry for whatever reason, he still won’t eat knowing he needs to. He also sleeps. A lot. I’m not talking just sleeping in (he doesn’t work so he could, if he wanted to, sleep all day). I’m talking a 3 -4 hour nap every single day. I know he’s had a constant headache that’s unrelated to the cancer (his eyeglass scrip is affecting one eye, they said it’s just fine but he has headaches all the time) and maybe that’s contributing to this. Other times like when I got home from work tonight, he was in bed but he was all chatty and laughing and in a good mood. Sheesh. Talk about the Twilight Zone.

My thought? Depression. Scared. I would be too. I just wish he would talk to me. That’s all. I’ve told him twice now that though he’s going through this physically and emotionally that I am going through it emotionally also. We, as a couple, need to hang in there together. Don’t leave me out. Please. Don’t ignore your friends either.

At work this morning a good friend asked how I was. I said fine and started to tear up. Dammit. I can’t do that at work. I already have things going on there as it is that I need to be careful of and I don’t need to add the emotional blubberball to all that.

I started thinking about the future recently. I mean the future, future. Like 5 years from now. I’ll only be 50. If TB isn’t here, I’ll be alone in our house. A truck in the driveway that I can’t drive. I thought about whether or not I would date. My gut says no way. And not because I would feel like I were disrespecting TB. Hell, he’d be the first one to say get out there and have some fun. But I think it’s because I cannot imagine my life without him so how can I imagine being with someone else??

Tomorrow he has a bone scan, Thursday is a blood test and urine test and chemo class (for both of us). Next Tuesday is something else, I can’t remember off the top of my head. For sure I would imagine the MRI results but I seem to think we find out late next week what drug regiman he’ll be put on. Good thing I came across a small 3×5 day planner for him to track everything.

I keep thinking that he just wants to give up yet I don’t believe he would. He did say that while the study really sounds like it will suck (side effects and what is it really going to accomplish anyway), you can’t do nothing. Or you die.

10
Oct
08

Split Personalities

I feel like I have three personalities now. One is the go to work, answer the questions people have about TB and appear outwardly calm while squashing my true feelings with a little smile on my face and trying very hard not to cry. The second one is being at home and trying to not be annoying or bothersome to TB by asking if I can do anything for him, etc. But lurking underneath it all is number three which is the one I really WANT to be and that I think I truly am, which is the stronger personality that would admit OUTLOUD  that I’m scared shitless that I’ll lose my husband sooner than I’m willing to admit, so since number 1 or 2 are easier, I’ll stay with one of those.

But I don’t like those either. They’re fake. Yet, I can’t be at work and think about this all the time and cry, that wouldn’t get my work done and  I’m probably just paranoid about how TB would react if he knew I was as scared as I am.

Are all my posts going to be a babbling bunch of odd thoughts? Does it matter?

I need to go pack, we’re heading out of town. Maybe I’ll have the guts to say something this weekend to him and that will help him understand why I’ve been acting the way I have around him.

Or maybe not.

06
Oct
08

The Toughest Question

I think by far the toughest question presented to us so far is how long will hubby (TB) live? Answer: No one knows. Here’s the deal.

Because kidney cancer affects each individual it strikes differently, the treatment they are given will affect them differently as well. So you can’t make a prognosis until you see how treatment goes.

TB’s treatment, remember, is not chemo – he will be assigned to a specific medication or combination of medications with the primary goal of halting the progress of protein getting to the cancer cells. Ergo – not allowing further growth of the cancer.

TB will continue with the treatment until one of two things occur at which time he will need to come off of the trial. Actually, there might be three but let’s talk about the two first.

a. He suffers bad side effects and can no longer tolerate the treatment.
b. The cancer grows in spite of the treatment.

If a or b occur, he will then be put on a different type of medication by our oncologist and possibly find him a new trial to participate in. That’s where I think we might have a third thing – seems that if the cancer grows then he may not be able to participate in another study UNLESS he meets certain requirements just as he has to for this treatment. Not everyone who has kidney cancer can participate in the same studies.

So, for the answer to those who want to know how long he has to live. It just depends on what happens with treatment. TB could fool all of us and live another 20 years – probably unlikely but who the hell knows? The key? What is his quality of life during that time frame? If he’s on the ‘gerbil wheel’ as he calls it of treatment and he does suffer side effects but not enough to totally bring him to a halt but he’s tired of treatment, he can stop. Any time of any day. I hope and pray he lives a good long time but I don’t believe in my heart of hearts that will happen. I’m not being negative, I’m being realistic.

For me I’m already having a hard time with a few things. For one it’s the overwhelming desire to want to help him. Which is so stupid because he’s not laying around (well, maybe a little), he’s perfectly capable of walking, talking, driving, mowing the yard though he does tire easily. So I know he gets frustrated with me asking if he wants something or some help, that’s when I get the ‘look’. I have to learn to not push and figure out when he really does need help with something. My natural personality is to be a caregiver and caretaker but now it’s been upped a level and I’ll have to think before I speak. Plus I imagine he’ll really need my help down the road so I guess let’s just enjoy the time we have. The other thing is his temper, whooeee, that’s a wild one. He’s always been HIGHLY opinionated, to the point where it can be offensive though no one hears but me (and I tell him to knock it off – surprisingly, he sometimes actually listens). But now he’s much louder about it in public.

I don’t know, maybe we’re both still absorbing all of this and it’s easier to bark than think before speaking.

It’s amazing the amount of stuff you need to do when something like this happens and if you weren’t acting as a responsible adult before you sure will be now. We have to get information together to apply for disability benefits because he will be debilitated (they say) once treatment starts and he will not be able to work for at least a year but most likely more. We need to contact the jury duty office to let them know it’s been strongly suggested he not participate because he’s starting treatment and it’s unknown when he can. A living will. Yes, we should have had this already just as a basic thing you do but it’s just always been one of those ‘we’ll get to it someday’. Someday has arrived, my peeps. It has arrived. Especially since TB does not want to be buried (waste of space and money, he says), he wants to be cremated and for everyone to have a party to celebrate his life. He does not want to be resuscitated or intubated at the end either. Icky thoughts but again, reality. That’s his choice, that’s what he should have.

Tomorrow is the brain MRI to ensure the cancer has not moved into his brain, this will allow him to definitely be a candidate on the study. If there is cancer, God forbid, he can’t be on that study but there could be another one.

I’ve broken down a couple of times and only for a few minutes because that’s when he hasn’t been around. The big meltdown will come for me eventually, I know it will. But right now we need to get everything organized for the inevitable future (though hopefully far, far into the future). But I also know I need to take care of me and not take on everything by myself. I have a wonderful support group of family and friends that I’ll rely on. We’ll both rely on them all, actually.

So – this weekend we’re going to head out of town to go up north to see some fall colors while he still has the energy to do so.

That’s it for tonight.

04
Oct
08

FSPDCS!!

I won’t tell you what each of those letters stand for but that’s what ran through my mind after talking to the surgeon on 9/20/08 who discovered that the nodules on the outside of my husbands lung are indeed cancerous. The stage 3 kidney cancer he was diagnosed with 3 years ago has returned by metastasizing to another area in his body. The first diagnosis was a tumor that was embedded in his right kidney and they had to remove the kidney at the same time they removed the tumor because the tumor was so large and to ensure they got everything cancerous out. He had various body scans and follow up visits for about 1 1/2 years after the surgery and nothing else showed up. So we thought it was done.

It’s not.

Now he’s wearing the cancer patient hat again – correction – the person with cancer hat and I’m wearing the caregivers hat. Hence, this blogs title.

I’ll vent and freak out, I’ll be joyful at progress and not so thrilled when progress halts or takes an unexpected turn. But mostly this is my outlet and I hope by getting the swirling thoughts and emotions down on ‘paper’ it will ease some of my angst.

I may even cuss.

Until next time…




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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