Archive for October, 2009

31
Oct
09

Happy Halloween!

My previous post ended with:

I bet you any amount of money that some other thing will happen or change between the time I leave here and arrive there.

I was so correct. Not all bad, but disconcerting none the less.

After I got off the phone with the social worker (on the cell phone) and with TB (on the land line) while at home, I saw our neighbor and asked if she would take me to pick up a walker. Since he was coming home that day, Tuesday, Oct 27th, we knew he’d need one at the very least by the next morning. Once we picked that up I asked her to just bring me directly to the hospital if she could and I’d bring the walker with me because I didn’t know if he’d even need it to leave the hospital.

I got up to the 5th floor, went to room 510 and stopped in my tracks. There was someone mopping out the room, no patients, no personal items, no nothing. I think my heart stopped beating for a second.

My initial thought? Oh. My. God.

I turned and walked to the nurse’s station and in an unbelievably calm voice said that my husband wasn’t in his room and that I’d like to know where he was. They asked who he was and just as I told them his name I heard from behind me, hey Patty, I’m in here. I turn around there he is in room 503, getting his bandage on his leg changed.

Apparently, after his roommate was discharged earlier in the day, there came a request for a room for two women who would be coming out of surgery so they needed the room. TB was moved to another room until getting discharged later in the day (his new roommate was getting ready to go into surgery, very old – perhaps late 80’s – he was in really bad shape with a broken his hip, problems from Parkinson’s plus hallucinations, really sad to see) and so that the room could be cleaned and readied for the women.

Over the next number of hours (I got there around 3, I think, and he was officially discharged about 10:45pm) he had his two blood transfusions, I learned how to change the bandages, we ate, we tried to figure out transportation because there were still questions about the timing of discharging so who was going to take him home, do we arrange it, are they going to, made a list of medical equipment he’d need, etc.

When all was said and done, he was transported home in a Life Link ambulance on a gurney. We’ll be billed for a wheelchair transport because that’s what we were promised (far less expensive) but because that wasn’t available, he got the ‘big rig’. Think that boosted his ego a bit? Of course!

The ambulance attendants, both women (cool!) really took a liking to TB. Most people do, he’s pretty charismatic in his own way. They got him all set up on the couch in the living room when we got home and made sure we had all of his valuables from the hospital and the walker, etc, etc.

Since then it’s been a very busy but productive number of days. We have a physical therapy schedule all set up (they’ll come to the house), a nurse will come at least once a week as well to check his blood and do other lab work, we’ve got the necessary medical equipment that will make life a bit easier, and I finally got to go to school to take my exam I missed on the 22nd. I know I didn’t get a 98/100 (what I’ve gotten every test so far) but that’s okay, I think I still got an A but even if it’s a high B I’m okay with that. There’s plenty of time to make up any points if I need to in order to maintain my A.

My instructors have been amazing, providing moral support plus giving me extra time if I need it to complete assignments. But except for that exam that I finally got to on Friday, I only have a couple of chapters of work to do and then I’ll be caught up. That’s what this weekend is all about, catching up and giving both TB and I a bit of time apart. Even if that means I’m just down in the office and he’s hanging on the couch.

If family or friends would like to visit, you certainly may and he’ll appreciate it because he’s considered housebound, per the nurse, until she says he isn’t. But be sure to call first to see what time works best because of his physical therapy schedule and the nurses, etc., and also to see if he’s in the mood. He’s definitely getting stronger but he does take an occasional nap (works for me!). The really good thing is? He’s eating!!

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27
Oct
09

Must…Calm…Down…

A frustrating day. First, we’re informed that TB needs to go to a transitional care unit and that the social worker is attempting to find him a bed somewhere. Then this morning TB was told that they can’t get him a bed because he’s a chemo patient. I then spent the next half hour trying to figure out how to get him home (he really needs a van type vehicle) and was really peeved because then why was anyone looking for a room in the first place, plus, what equipment do we need to get now that we have just been told this with only hours before he’s discharged?? To top it all off he now needs a blood transfusion that will take a good 7 to 8 hours.

 

So I’m on the land line phone here at home with TB while he’s telling me this and my cell phone rings, it’s the social worker who says she has a room for TB but I told her I didn’t understand, he was told he can’t go somewhere because he’s a chemo patient. No, no, no, that’s not true. I told her she had to go in his room and tell him what’s going on and then call me right back.

 

While I’m waiting for her to call me back the surgeon must have conferred with her and Frank and they now told him that no, you don’t need to go to transitional care, we’re going to set up home care. You’ll leave tonight after the blood transfusion.

 

Good God, could the group of you get on the same freaking page???

 

TB calls me and tells me this and I had to calm him down which was so difficult because I am not calm right now myself – not in the least.

 

I’m leaving now to go to the hospital, I’m absolutely furious. And I bet you any amount of money that some other thing will happen or change between the time I leave here and arrive there.

25
Oct
09

Sunday Update

TB called me last night and was very medicated and apologized for being in a bad mood when we visited him. I told him because he was in pain, that he deserved to be in whatever mood he wanted to be in!  He babbled on for about 5 minutes, clearly the meds were working as the things he talked about were totally random yet suddenly something completely coherent would slip in.  I had to talk rather loudly at the end of the conversation to tell him to hang up the phone  because he was falling asleep.

I went to the hospital late this afternoon with one of TB’s good friends. TB was up in a wheelchair when we got there and looked a bit spaced out but nothing like he did yesterday.  It was amazing to see how much he’d improved since I saw him last,  he’s certainly not 100% ok but he’s far better than what he was.

He had a physical therapy session yesterday after which he fell asleep in his wheelchair and two sessions today. I should point out that he does not have a cast. His leg has bandages over the incisions and a brace. When he’s sitting in the chair his leg is hanging from cloth loops to keep it elevated. When he’s in bed he’s using something he referred to as a CPM, I haven’t done the research on what the letters stand for but his leg sits in it while he’s in bed and it’s constantly moving to keep the leg in motion.

About an hour after we arrived we took off. I had noticed that about every minute or so TB’s eyes would get a glazed look in his eyes and then boom, he was back – but there was more checking out then staying checked in and his dinner had arrived so it was good timing to leave anyway. I’ll be heading back sometime in the morning to check on him. I should also know tomorrow where he’ll be going for transition care and for how long. He is completely on board with that, by the way, but only if he gets a private room. That means I didn’t have to convince him – he actually mentioned first that he was not ready to go home yet. That’s a huge relief, trust me.

Well, I’ve gotten some of my homework done from missing school last week but still have more to do so I’m going to end this post for tonight. I plan to go to class tomorrow afternoon but Tuesday is still up in the air until I know about transitional care, since I’m his decision-maker I need to be there. Once he’s in transitional care I’ll be back to my regular schedule (for the most part) and he’ll develop one that will be in a more relaxed environment than the hospital.

24
Oct
09

Surgery Saga Continued…

One of my best friends came over today and we went to the hospital to see TB. When we entered the room there was a nurse there talking with him. When I saw him for the first time I nearly cried. Somehow – I didn’t. His entire right leg is encased in bandages, elevated on a pillow and much of it was covered in blankets. But it was the look on his face and in his eyes that got me. Pain, lots of pain. And he was ticked.

There was apparent confusion over when he was to get his PT done, he was told by one person that it was to be done at a certain time and told a different time from someone else. Don’t think this is all confusion on his part from the meds. He’s a pretty smart cookie and retains information like you wouldn’t believe.

After the nurse left – assuring him she would let his nurse know that she needs to come see him as soon as she’s done with her lunch – he just rolled his eyes. Once again it was two different stories. RW and I tried to lift his spirits a bit by presenting him with a gift that RW had put together. I’m not going to share what it was, it was personal and he thought it was great – called her a ‘wild woman’ for making it, I’d like this to be something for them to have for themselves.

We only stayed about 10 minutes, trying to raise his spirits, but he would space out during our conversation and say “f**k, it hurts so bad”, so finally we decided it was just better to leave so he could deal with his pain his way. At times like this people just feel so vulnerable and really don’t want others to see them that way (except for nurses with pain meds!) so I didn’t want him to feel as though he needed to suck it up with us standing there. Just better to go.

We stopped at the nurse’s station and I asked a woman who didn’t look like a nurse if she knew who we would talk to about aftercare, etc for TB. She, Kate, happened to be the right person, she’s the social worker and we were able to talk to her right then. Kate explained that the doctor’s orders have a question mark on whether or not TB will be discharged on Monday due to other things besides the surgery. Both the surgeon and the oncologist will need to confer. Earlier this week TB’s calcium and hemoglobin were both too high so he was treated for that twice and they need to be sure those levels are okay before he can be discharged.  Which led to another question.Where is he being discharged TO?

I explained to Kate that our house was thissmall and that I didn’t know where he should be after Monday. She explained that there are places that deal with transitional care, she would do the legwork and let us know which places accepted our insurance. Both RW and I stressed that if he doesn’t have a private room, he will not go. TB is the proverbial patient from hell – but only because he truly pays attention and has learned what type of care should be occurring – when it doesn’t, he lets you know. I love him to pieces but I wouldn’t want to be on the end of any of those conversations!

Turns out that there are two places near by that if our insurance covers them, the private room costs are an additional out of pocket cost of $40 per day and $55 per day depending on which one it is. If I remember correctly, Kate said that people stay at a place like this for a week to two weeks. If we can choose one of those, then I’ll have to convince TB to go there. I think he will IF it’s a private room – that’s the key for him personally to healing better and faster – be by himself.

I just called (5:15) and talked to his nurse who said he’d had PT and did well and was sitting in a chair (I assume a wheelchair) sleeping. He’d been given a Tylenol and a bump of dilodin earlier and is scheduled for another dose at 5:30. I explained that TB has a high tolerance for pain so for him to complain that it hurts had to mean that it really did hurt – he wasn’t just whining and wanting more meds. He actually does NOT care for narcotics, he likes to be  in control. You’re not in control when you’re taking narcotics.

RW and I did some shopping at Target before I got too freaked out because there were too many people there and had to finish and leave, she’s much calmer than I am shopping, I like to get in and get out and purposely try to shop on non-busy days. Today was not one of those, I forgot it was Saturday!

Well, I have the bedroom curtains drying on the line outside and need to check them. I thought it would be a good idea to take advantage of the weather and do that especially since I have no idea when or if we’d ever washed them. That probably sounds terrible but it’s not something I usually think of. But since we were doing all this cleaning yesterday I figured I should take it one step further and do the curtains. Oh, and the blankets. I also have homework to catch up on as I’ve missed three days of school, and I don’t know if I’ll be missing Monday or not so I’m going to do whatever homework is due in everything that I possibly can so I’m caught up. Or at least as caught up as possible. I refuse to lose my ‘A’ average. 🙂

23
Oct
09

Surgery Saga

October 20, 2009

TB decided and the oncologist agreed (I believe with a sigh of relief), it’s time to finally do the surgery on the right femur (the kidney cancer has metastasized to the bottom of the femur as well as what they call the medial cortex of the femur). He has been taking an awful lot of narcotics to handle the pain and the leg is at high risk for spontaneously breaking so he’s finally giving in.

We’ll be checking TB into the hospital tomorrow morning, but the surgery time/date is unknown because we won’t be seeing the orthopedic surgeon until some unknown time during the day tomorrow (all the lovely ‘unknowns’, grrr). At this point we don’t even know the specifics behind the surgery they will do because previously he had three options. But that was back in January, I don’t know if the same three options are available to him now or not.

October 21, 2009

What a long and stressful day. We got to the hospital as directed before 9 am. I finally left at 8:15 pm. We never even got to see the orthopedic surgeon to find out what surgery will be done and when. Apparently, there was confusion over who was to see TB. All day long we would ask the nurse to find out where the ortho guy was and each time we’d get either “he’s reviewing your x-rays” or “he plans to be here sometime today”. (Can someone define “sometime today”?)

I just cannot express how frustrating today was. I think if TB hadn’t ended up with a private room (luck of the draw or based on how long he might be there, or? ) he would have thought seriously about leaving, he was that ticked. Only thing was, he was hooked to a morphine drip so it would be tough to bail (they decided to do the morphine instead of the mix of oxycodone/oxycontin meds he’s been taking).

Finally, around 7 I told the shift nurse that we had to know if someone was coming tonight or not because it didn’t make sense for me to hang out if they weren’t – I would stay to keep TB company if he wanted it but we were both getting stressed out about not seeing the surgeon so we wanted a firm answer. She went and found out about the confusion, then subsequently heard from one of the surgeons that I should go home as no one would be there tonight. The nurse said I should go back sometime in the morning but if they know something early they’ll call me and I’ll go then.

Pain-wise he’s comfortable except for the fact they won’t give him the amount of aspirin he usually takes once in the a.m. and once in the p.m. for his perpetual headache because they don’t know when surgery will be, and they need him to be with as few blood thinners in his body as possible. I think that’s the explanation – the nurse was from Iceland so she has a bit of an accent so I had to piece that together. I’m sure there’s a reason for narcotics not being able to take care of the headaches but I’m clueless.

October 22, 2009

Things were better today, what a relief all around. The surgeon came to see us around 10 and explained the surgery. TB will have approximately 9cm ( I think that’s nearly 4 inches) of the bottom of the right femur removed and replaced with hardware. In order to have the femur hardware attach to something, however, they’ll have to put in a new knee even though his is fine. If the femur hardware were to butt up against the ‘real’ knee, well, do the math. Can you say, ow? 🙂

TB has been eating a LOT (I think it’s the even pain med distribution and the saline iv – which is helping with his dehydration, that’s helping his hunger, I don’t even care – eat, man, eat!!!) and is actually in a fairly good mood, all things considered.
The surgery is scheduled for 1pm tomorrow, it will be about 2 hours or so long. The surgeon said that TB would actually be mobile – though NOT healed – within just a few of days of the surgery (he can’t leave until that happens), the healing will be a number of months. The nearly immediate mobility comment kind of freaked us both out but we’re all for it. The surgeon also said that someone will talk to us about aftercare and PT. We need to find out if he’s coming directly home next week or if he needs to go somewhere else for a week or two – simply don’t know at this point. I only know that with a bathroom thissmall in our house, it would be tough to maneuver in there with crutches and we definitely have no room in the house for a wheelchair.

After I left today I came home and took a nap – just dropped off like a rock until the phone rang. It was TB. He had just gotten a hand massage from a volunteer. He’s also considering (because why not, he’s there with nothing else to do, ha ha) some other things like energy healing while he’s there. Could be the meds talking but whatever it is, he’s charmed all the nurses, nursing assistants, orderlies, and all of the hospital volunteers like you wouldn’t believe. Everybody knows TB.

He had a lengthy conversation with another volunteer about religion today and let her know that he thinks that if he had gotten into any religion at all so far in his life, he would have become a Buddhist. But that’s a whole other ball of wax and he can talk about that for hours, let’s just say she was quite amused with him and stayed in the room chatting with him for a solid 20 minutes.

By the way, the surgeon told us that people who have had this surgery have been able to go right back to doing their normal thing, like walking, skiing, etc. But he warned TB that though he may not be able to ski in his future, he will be able to walk without pain. Which is wonderful because that darn leg is the only thing that hurts that’s related to the cancer, everything else he’s doing very well with. Thankfully TB is being very optimistic and seems ready for whatever is ahead, so keep up sending those good vibes his way. Remember the Buddhist. 🙂

October 23, 2009

I talked to TB this morning, the nurses on his floor told him he would be moving so they needed to pack his stuff up. That didn’t go over well as he was really enjoying his private room. They said he has to be moved because the surgery floor is a different floor than the one he’s on but that they would note that he’s very adamant about wanting a private room.

Surgery was to begin at 1 and be a two hour procedure. I stayed home today to clean our house with my cousin (TB hates when people sit around waiting at the hospital when he’s in surgery and since he’d be in no mood to visit after the surgery, don’t be there either) which was helpful in multiple ways. One, it kept me busy and I used a lot of nervous energy dusting and vacuuming while she did the icky work (gotta love your cousins who don’t mind cleaning bathrooms) and two, we got the house cleaned. That was actually what TB said he’d prefer we do – it was a planned event anyway so that’s what I did while I waited to hear from a nurse about the surgery.

It’s now 5:55pm, CST and I’m still waiting to hear from a nurse. I called at 3:30 for an update and was told the nurses were changing shifts and updating each other on cases and the nurse would call me back. I called again at 4:30 and the nurse said he was still in the operating room, I asked when he went into the OR and she said he was scheduled for 1pm. (You know what? It’s like pulling teeth with your bare fingers to get a straight answer.) I said is that when he went into surgery or did it start later? She didn’t know but she would have a nurse call me as soon as they have information. I’m calling again at 6 and will provide another update as soon as I can. I’m quite livid right now not knowing what’s happening, it has my gut in a knot.

It’s 6:10 and I finally got an answer. He’s in recovery and expected to be in his room around 7. The nurse promised me she would call me and let me know how he is once he’s up there and settled in, could be around 8 once all is said and done.  But I’m calling at 8 if I don’t hear anything by then.

6:20 pm – the surgeon just called. He said they started surgery late and apologized, also said they removed about 6″ from the femur and put in the metal replacement piece with the hinge that will connect to the tibia, also removed the rod from his lower leg that has been there since a roller-blading accident many years ago (he’s cleaned it up for him to let him have it for a souvenir), said the surgery went great and we’ll know more tomorrow on how long he may need to be in the hospital. For sure at least 2 more days but quite possibly 3.

Whew.

14
Oct
09

Rough Road Ahead

Before I talk about TB and how he’s doing, I’d like to note how well my mom is doing. She’s had 4 (maybe 5) chemo treatments to date for her B-Cell Lymphoma. She’s lost most of her hair and she’s lost a lot of weight in a very short time period. Last week she had an appointment to have a PET scan, an echocardiogram and a lumbar puncture. All to establish how she’s doing at this point. They performed the PET and echo tests and apparently they doctors thought they looked fine, but they put off the LP to this week because they determined she was anemic. She was given two pints of blood to deal with that. She doesn’t know if they’ll need to do radiation or not, she just waits until they tell her when to come in and finds out at that time what they’ll do. She’s quite tired and wants to eat but she has an off taste in her mouth that prevents her from wanting to eat – nasty circle, you know? She’s also realized that it’s okay to listen to her body – if it says hey I need a nap – she takes a nap. I know that’s hard for her but I’m glad she’s doing it. But she’s doing far better than she thought she would be.

As for TB, well, it’s been a rough few weeks. I have my moments on handling everything but as a very good friend pointed out to me recently – hard as it is, I have to put myself in TB’s shoes and not take things so personally, it’s not as if he WANTS to be ill. I’ve done a lot of thinking about that recently. I remember just back to May when TB was still looking as if he didn’t even HAVE cancer. Now? He’s gaunt, arms and legs are just sticks (he hates that about his legs – he said he always swore he would never get ‘old man’ legs and now he has them, it pisses him off), he’s wearing size 40 jeans and those are loose on him. I’ve always known him in 42’s or 44’s so to see him in 40’s is kind of shocking. Don’t think he’s fat either, he’s 6 feet tall and his buddha belly is pretty much gone. And while the typical weight charts would say he should be a lot smaller for his height, that’s not necessarily the case when you have cancer.

My estimate of his weight right now (and it will be confirmed on the 23rd at the next office visit plus probably lower by then) is that he’s around 195. A year ago he was approximately 240. Do the math. The cancer sucks, man, really bad.

He went up to visit his friends for a few days last month and just sitting around and doing nothing wore him out. Over the last 2 weeks or so he’s been basically in bed probably 12/24 to 18/24 hours a day. I make sure I get him his meds before I leave for school in the afternoon and wrap the heating pad around his femur. The Oxycodone and Oxycontin are about the only thing that keeps the pain away but at the same time makes him tired and not hungry. Even with the Prednisone his appetite is just not there.  He also has a bit of a cold now too so imagine how cranky he can be. Oy!

TB had an x-ray of the femur last week. In the post before this one you’ll see the chunk that showed up in January’s x-ray. That’s where the cancer metastasized to and had eaten away at the bone. I called the doctor’s office today to get results from last week’s x-ray because we hadn’t heard and because TB is in so much discomfort. Though don’t misunderstand, he does say almost every day that he feels good because he woke up and is still alive. 🙂 But I wanted the results, even though I was sure they wouldn’t be good.

The nurse said: “The medial cortex is destroyed and he’s at risk for a pathologic fracture.” They said he can’t put any undue stress on the leg and that a simple twist or fall can break the femur. That said, I’m guessing that at next week’s appt the oncologist will tell us it’s time for the surgery to replace the femur. There are two things scary about this surgery. One, bleeding is an issue because the cancer med he’s taking thins his blood so he’s at risk for surgery complications. Two, our house is not big enough for a wheelchair or even someone on crutches to get into the bathroom. So I’m not sure where he’d recover at least initially. But we’ll figure that out down the road. We’re just going to get through each day as it comes.

It’s time for me to get some breakfast, take a shower and get ready for school. I’ll update again as I know more information.




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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