Archive for November, 2009

30
Nov
09

Since The Last Post…

TB was admitted to the hospital on Monday, November 23. We went to the E.R. rather than to his oncologist because that’s what the oncologist’s nurse suggested after I explained over the phone how the weekend went. Of course, she agreed that he should have gone in over the weekend but with some people like him (stubborn man, grrr…), they won’t go until they’re ready.

I was concerned when the nurse took his blood pressure in the ER, it was 89/65. Yep, you’re reading that correctly. It didn’t surprise me because it was already apparent that he was light headed and feeling faint, but it still concerned me. Plus his pulse was running high.

He was brought to a cubicle and told to put on a gown, he didn’t want to but the nurse told him he had to. She then took a lot of blood, checked his b.p. regularly throughout the E.R. visit and kept on him about providing a urine sample. I think many people don’t have a problem with urinating until someone wants a sample, I swear all the plumbing stops, of course that’s what happened to him! Murphy’s Law. He was finally able to provide a sample after an iv drip of a full bag of saline (a liter) went into his system and he had eaten and drank more fluids. They also took an x-ray of his chest because his breathing wasn’t as deep as it could be on the right side (not a surprise, that’s where they performed a procedure last year called pleurodesis, to drain fluid from the space around his lungs), but they couldn’t say positively whether they were seeing a touch of pneumonia or if it was scar tissue from the procedure. They started an iv of antibiotics while still in the E.R. and would continue them about every six hours throughout his entire stay (they eventually decided to officially admit him and he was brought to a room in the late afternoon).

The doctor who came to his room to review his information and his admission data told us that cancer itself can cause fevers. That was a new one one me and frankly, I think the fevers were due to an infection. She did say he likely had some kind of infection but it was unknown what specifically it was. His calcium level was high too, so he’d be getting something for that as well. When I left he was in the process of ordering dinner and settling down to make phone calls to his friends.

What was odd was that the next day when I talked to him on the phone before going to the hospital, he sounded worse than he did when he went in. In fact, on Monday by the time he was brought to his room, he was sounding downright chipper. So I don’t know if it was the antibiotics or what that changed things. On Wednesday, the day he was discharged, they had to give him a transfusion again so that meant he was anemic. They also gave him medication for the hypercalcemia while he was there but I never got a straight answer on exactly what he was given. Usually he gets Zometa.

He was glad to be home on Wed but he was seriously wiped out just from using the walker to go from his friend’s truck into the house. Then Thanksgiving Day we thought we’d be having a gathering with his daughter and her husband plus TB’s former wife at our house. I had to cancel though because he was simply and thoroughly exhausted. I started thinking he’d have to go back in the hospital but when they discharged him they said “All of his levels, blood cell count, blood pressure, calcium, etc, are normal, there is nothing else we can do here for him so he can leave now and get back to his routine.”, I disagreed but had no justification to argue.

His former wife, B, is a nurse and she agreed to come over on Thanksgiving and see how he was doing. Both to reassure TB and to reassure me. He was running a fever, 100 degrees, and seemed a bit out of it but he asked for some Mountain Dew and he started to wake up more and become more alert. B gave him a bit of a backrub and scalp massage and he really enjoyed that, she also did a little healing touch therapy. He was definitely feeling better when she left.

On Friday TB’s daughter and son-in-law came over with a Christmas tree for us. Our tradition since we met has been to go to a tree farm and cut down our own Christmas tree. K & J were kind enough to get one for us and bring it over. They visited for a while and so did TB’s former wife, B. I left at one point to go shopping for a printer cartridge as I couldn’t print without it and had homework to do, and B gave TB another healing touch therapy session while I was gone.

When I got home TB was napping but woke up and said he felt much improved. Since then he’s been in pretty darn fine form – his appetite has been crazy good (no arguments here!) so the infection must be on its way out.

The sun is out today and the Christmas tree is in the stand in the living room sucking down water like it’s going out of style (that’s a good thing!). I have school this afternoon and TB has a doctor appointment, and when I get some from school I’ll start decorating the house. Beginning with decorating the darn near perfectly shaped Christmas tree. I’ll share a picture here when it’s done. 🙂

Enjoy the day.

21
Nov
09

Still Frustrated, Not To Mention Confused

So not only does TB have this on-again/off-again fever but he’s super tired to the point of being exhausted. Just to get him to sit up on the couch and take a pain pill is a 10 minute process. I told him a few minutes ago that whether he likes it or not, if he’s still feeling like this tomorrow, we’re calling his oncologist on Monday or even the on-call doctor tomorrow as his temp right now at 8:30 pm is 103.1. I just gave him aspirin to help it go down and will check him again in an hour or so. His temp was normal for the majority of the day but then this evening it’s back up. I’m seriously confused.

What’s perplexing is that he isn’t on any new meds, so there aren’t any side effects to be looking for that could cause this. He isn’t sick to his stomach – I actually got him to eat some strawberries, half a small blueberry muffin and a protein drink today, plus some water and juice. But his urine is still dark which is how it is when he doesn’t have enough liquids. I’m trying to push the water as best I can, but then he responds with ‘then I have to go to the bathroom’. Well, that’s why we brought home a couple of those urinal jugs, use them. Please. The only other concern is that he hasn’t had a BM in a few days, even with taking laxatives. On the other hand, he also hasn’t eaten much. Sigh.

The stitch and b*tch was sort of a bust- unfortunately two people didn’t feel well which meant three weren’t coming (one was a friend of my cousin’s who would have come along with her) and another person had homework to catch up on (I can relate to that!). But the one person who was able to make it was my step-daughter and since she and her dad hadn’t seen each other in probably over a month, I was really, really glad that she came over. Plus, she’s just a lot of fun to talk with – so thank you for coming over, K , we love you! 🙂

She’s an amazing knitter, no patterns for that girl! I’m so envious of that knack she has, granted I can re-do a pattern and modify it til the cows come home but create something with no pattern at all?? Not a chance. My hat’s off to her. Oh wait, that’s right, I don’t wear hats. Ha ha! Today she was knitting a scarf that did require a pattern though, using a pretty brown/tan wool yarn, I think it’s going to be quite nice. I started working on a felted mitten with some Classic Elite Paintbox yarn in a mix of greens and white. I tried to find a link for this post to show what it looks like, but instead what I found was a note on yarndex indicating that the yarn was discontinued in spring 2008, it’s color 6897. Guess I’ve had mine a while.

I’m going to work on my paper for school since it’s a quiet thing to do while TB is sleeping. I hope like hell he feels better tomorrow.

21
Nov
09

Forecast: Sunshine And A Bit Of Frustration

I should have been out here much sooner than today, but things have been up and down and down and up and sideways and backwards and all sorts of other directions. Trust me, there are more.

Last night TB had a high fever but he’d been wrapped up in a sleeping bag for hours on the couch, wearing a long-sleeved mock turtleneck, sweatshirt, sweatpants, those lovely embolism socks, and regular socks. And once in a while he does get a fever which after a few hours or so and after a dose or two of aspirin goes away, so this didn’t completely alarm me though it was 103.9. As he and I both said that had to be bogus and after the aspirin, some cool water and him shedding a few layers it dropped to 101.1. I still don’t like that temp either but the scar has no oozing and that’s the critical thing. It was 102 a short time ago but he again was in the sleeping bag (this time all night long) with lots ‘o layers. So he took aspirin, his pain meds and some water. He’s not nauseous at all and when I suggested we have one of the home care nurses drop in today, he scoffed and said “I have so many things going on, it’s not a big deal.” So I will defer to him on this one.

His leg is a bit swollen but it’s expected to be that way and will continue to be swollen for quite some time, especially after doing his physical therapy exercises. Speaking of which…I got pissy as hell with him yesterday about not doing his exercises on his own like he’s supposed to. Of course, when last night’s temps occurred I felt bad about it but I still feel justified.

He wants someone to come to the house and do physical therapy with him every day – he won’t take the initiative (unless I bark at him and get pissy which in turn ruins MY day) to do it himself like he’s been told to. Granted, I’ve been taking the passive approach and asking when he’d like to do them or ask if he’s up to it. Now? Once he’s past this temperature issue, it’s going to be appointment time with ME. I wonder if that will make him start doing them on his own? Hmm.

So today I’m having a stitch and b*tch with a few people, we’re having fresh strawberries, blueberry muffins, and my homemade salsa and chips. TB will have to share the couch with us until he can’t stand it anymore (our b*tching, of course) and then he’ll have to move into the bedroom to the bed. He hasn’t been sleeping in the bed yet, it’s a rather high bed (think bed and breakfast type) with a footstool to use to get into it. Kind of risky at night for getting in and out of for going to the bathroom.

Overall, he is making progress. Though he’s worried that his continued headaches are part of the bone mets they noticed that had gotten bigger back in August. The oxy meds (codone and contin) do nothing for the headaches, only aspirin and acetaminophen do. He’s had headaches for a really long time now, it’s not something new. Though they were alleviated for a while by just aspirin.

We don’t have an appointment set for new scans (don’t know why since it’s been over three months) but he does have an x-ray he needs to go in for and then an oncology appointment on December 16th. That’s my last week of school for this semester and I have class that day, if we have an exam I can’t go to this appointment – though it’s possible all testing will be done the week prior. No big deal as we can always arrange to have one of his buddies go and then update me on what’s happening. I just hate not being at the appointments because I can only think of so many questions ahead of time, I always think of more once we start the discussion. On the other hand, TB doesn’t really want to know more now since everytime another symptom occurs he feels it’s going to open another can of worms. He’s probably right about that. Unfortunately.

I need to get dressed and head over to the jeweler’s, TB’s ring had to be resized and he’s anxious to have it back. So if it makes him happy, it makes me happy. Ta ta.

 

 

 

09
Nov
09

Getting Better All The Time…Whew

Since the last post TB’s gotten stronger and has become much more confident with the walker. He’s also learned to not push it and by not pushing it, he’s in a better frame of mind as well about doing his exercises.

Last Friday the physical therapist had him practice going down the front steps. Knowing he had a follow-up / post-surgery doctor appointment today (he’s there right now, I can’t be there as I’m leaving for school in just a couple of minutes) we knew we needed to know the process for going up and down stairs so he could leave safely to go to his appointment.

Though he was a bit shaky going down the steps during the process he did that very well, it was when he was attempting to go back up the steps that he froze in front of them. Apparently it’s totally normal but it still freaked him out badly, he was shaking. I’d never seen him like that before, I felt so bad but he had to do this, I couldn’t and nor could anyone else. He said he had no faith in either leg, the one that had the surgery OR the one that didn’t. Once he was confident that the two of us were there to stabilize him going up he managed to do it. Yeah!

Over the weekend we did more of the exercises and he did quite a few ‘walk-abouts’. That’s what we’re calling his trips using the walker to the bedroom, through the dining room and the kitchen and back to the living room. At first he was almost panting when he finished one round, but last night he wasn’t at all. The leg doesn’t have the horrible pain anymore, it’s more of a deep ache. He still requires pain meds and he’s a bit tired but it’s all expected and all normal.

Today the therapist came and helped him go down and back up the steps twice and TB said he felt so much more confident now that he had done that. One of his good friends came to help finish cleaning out the gutters today and he’s the same one who took TB to his appointment. We’re both comfortable with him as he’s a big guy (6′ 3″ or so and over 200 pounds, strong!) and with the stablizing belt TB can use when he’s using the steps it should work out much better on their return trip. Fortunately, we don’t have much in the way of steps – there’s only one step to get out of the house to the top of the stoop, then it’s two steps to the sidewalk. So in that respect we’re very fortunate. Plus the wrought iron railing is a bonus.

Cross your fingers all goes well at this appointment. The scar looks really good – if you can call an earthworm-looking scar that’s nearly 13 inches long good – so hopefully the staples will come out and he won’t have to wear the embolism stockings anymore. Those are so hard to get on and off, oh man, worse than nylons for a woman!! If you’re a man and reading this – just trust me – it sucks.

Okay, must fly to school. A sincere thanks to everyone who has been so supportive – family, friends and strangers alike. We thank you. 🙂

05
Nov
09

Quit Pushing, Dude!

On Monday this week, the physical therapist came to give TB a work out session. But TB ended up over doing it. He keeps telling his friends and whoever else will listen, that I was worried he would overdose on the amount of Oxycodone and Oxycontin he was taking after the session and through to Tuesday morning, and that there was no need to call the nurse to come by to check on him on Tuesday. He’s wrong – allow me to explain.

During the session, the therapist explained to TB that the intensity of the exercise should be just to the edge of when pain begins, then he should stop the bend/kick/lift/whatever he’s doing. The fact he had taken a pain pill before the session may have worked against him because doing so probably caused him to think he was only pushing to his limit, but because the medicine masked some of the pain, he actually exceeded what he should have done and didn’t realize it until later. Unfortunately, he paid in a very painful way.

While the therapist was here, one of TB’s friends came over and cleaned out the gutters of the house and blew the leaves off the roof, typical fall type work that TB can’t do right now. Another friend came over on the weekend and blew all of the leave out of the window wells, the lilac and flower beds and all of the other nooks and crannies so that I could take the mower and crunch over them (we don’t bag the leaves, we mow them so they basically get mulched into the grass). That friend also put up Christmas lights along the carport – I know it seems early to do that but in our state you take advantage of the good weather in the fall to get the lights up. But never fear, though the lights are hooked up they do not get turned on until the day after Thanksgiving. 🙂

TB also did a ‘walk about’  during that session in the house using the walker. He’d been hesitant to do any additional walking on it other than to go to the bathroom. He said there’ s a confidence level you have to attain and that using a walker is not intuitive so he really has to concentrate. I was okay with especially once he started to ask me for pain pills. Lest you think he is incapable of making his own decisions on what meds he needs to take, I monitor them for the simple fact it’s easier that way. Plus it’s not just pain meds he’s taking, he has meds for blood pressure, cancer, and phosphates plus he takes a med that helps stimulate his appetite, a med for his blood, laxatives (because of the narcotics), and aspirin and something else that I can’t think of. So it’s my job and I think on Monday he didn’t like that it was my job.

From about 5:30 pm on Monday night until 6 am Tuesday morning, TB was in agony. I kept a list of how much of the pain meds I had given him and to me it was high since it was 2 to 2 1/2 times the dosage he normally has but he was so insistent and pissy about it. When I checked him about 2:30am I noticed the bandage had blood on it up near the top of the leg. I didn’t like that much since we’d been home nearly a week and not once had there been blood on any part of his leg. So in the morning I called the home care folks and while I was at school the nurse came by, looked at it, changed the bandages and said he was fine. But – and there is a but – the dude over did it. Hence the blood. Hence the pain. Hence the fact that it was good I had the nurse check him.

Today he had another session and this one went much better. Except he’s had a couple of what he’s calling panic attacks – he needed to have the windows open today even though it was quite cool outside so he could HEAR sounds other than what he could hear in the house. I’m trying to type quietly now so he can relax but since my natural typing speed is quite fast it’s very difficult to go slow and be quiet. So I’ll have to end for tonight.

More tomorrow or Friday.

 




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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