Archive for the 'kidney cancer' Category

28
Feb
10

Rest In Peace, My Love

Frank Joseph Asher

Born: 01/31/1953

Passed: 02/28/2010


I Will Love You Forever

My Teddy Bear

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28
Feb
10

Another Day Closer To Spring

That’s what I said to Frank this morning. Each day now for a few months we’ve said that upon wakening. I can feel the warmth of the sun coming through the living room picture window and it feels so good.

Frank mostly sleeps now, I administer his morphine on a regular schedule via an oral liquid method rather than a pill because it’s easier to take that way, I will be increasing the dosage as needed. I also had the nurse put in a catheter yesterday so that there’s less movement for him, movement that even with medication sometimes causes pain. I want him to be as stress free as possible. At the very least he must have that.

We’ve had a number of visitors over the last week and I thank every single one of you from the bottom of my heart for taking the time toย  visit. I know how important it is to you as a friend or family member to have that time with Frank and I know somewhere inside him he knows you’re there and loves you for coming.

However, it’s becoming more and more clear that even having two people at a time in the room can sometimes be disturbing for him. I had established a schedule the other day for visiting but am changing it again. It will be determined on a day-to-day basis and there may be days that I won’t allow anyone here. In fact, today will be only Frank and I. Call me selfish, call me whatever you like – it doesn’t matter because Frank is number one on this journey to his new life. In my opinion it is critically important to keep him calm and at peace at this point – I know he knows when I’m here and calms down almost instantly when I talk to him, I want to keep that level of comfort going.

I want to spend time with him by myself now, not worrying about homework or bills or other trivial details. Instead just talking quietly about our vacations and wonderful times we’ve had together, his love for the outdoors and campfires, his sense of humor, his fantastic and loving friends, and of course, how much I love him.

I know some people are worried about me and how I’m handling everything. I won’t be alone starting this evening, one of our very dear friends will be staying for a while with us.

Know that I love you all and will notify those who need to know what’s happening via email initially and then via phone as we near the next phase of his life.

Patty

22
Feb
10

The Surprise

A very dear friend of mine came up with the idea of picking Frank up from the home ‘limo’ style. She has a beautiful new Lexus SUV, and thought it would be cool to act as a chauffeur – holding a sign with his name, a red carpet for him to be wheeled on to the vehicle and she dressed up in a black suit to make it official. He was floored…he had zero clue this was happening. ๐Ÿ™‚

Pictures below of the pickup along with pictures of his new ‘digs’ that I set up in the living room.

Picked Up In Style

Check out the smile:

Picked Up In Style3

New Digs For The Hubster

New Digs For The Hubster2

New Digs For The Hubster3

New Digs For The Hubster4

21
Feb
10

Quick Post

Heading over to pick up Frank. We have a surprise in store for him that I’ll share later.

The living room is all set up to be his living space – it’s very cozy.ย  The room has a fireplace, tv, stereo, view to the front yard through a big picture window, and a view through the dining room (which now holds the couch and an end table, so is like a den) to the back yard.

I even pushed the wheelchair through the doorways to see if it would fit through, except for the bathroom it will go through.

More later.

18
Feb
10

Things Are Changing

I sent the following information to a number of people last night and today and want to get it posted here as well. I know I didn’t get everyone in the emails, forgive me. For those who read this that were at the meeting last night – let me know if I forgot something or phrased something incorrectly in the post. That was the good thing about having so many of us at the home with TB for the discussion – more ears to hear the information. (This is being copy/pasted from the email so it will look odd format-wise).

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For those who may not be as caught up as others, Frank (aka TB) was admitted to the hospital on 1/26 with dehydration and pneumonia. We were told a couple of days later that the cancer metastases had progressed, some larger than others and some new. He was transferred to a nursing home on 2/2 for PT in hopes of helping him become stronger and be able to take care of himself at home. That hasn’t proven to be possible so now we need to transition to hospice care, which will be here at home.

We had a meeting this evening with Frank’s oncologist who came to the nursing home so Frank didn’t have to go to him. Out of that meeting came some realities that though we knew were coming, unfortunately, now they’re front and center.

Let me add that Frank is alert, he’s totally aware of what is going on, he’s in agreement to everything that will be taking place. He’s evenย  trying to get me to spend some of his money (he emptied out his 401k – it wasn’t much but he’s going to do whatever spending he can with it before he’s out of this world – his words!). He keeps coming up with different places to google and find things to buy. ๐Ÿ™‚

  • Dr R – his oncologist, explained that Frank has received the maximum benefit possible from physical therapy. I don’t mean insurance-wise, I mean that the maximum his body can benefit from. In other words, more PT won’t make him better, it will actually just exhaust him.
  • Frank’s high level of fatigue is caused by the progressing cancer itself as well as the pain medications (he was switched to morphine in the hospital). The hypercalcemia causes tiredness also.
  • His high calcium level (the hypercalcemia) is caused by the cancer and they will treat those symptoms as best they can. Like the cancer itself, the calcium problem cannot be fixed, only the symptoms can be alleviated.
  • His occasional word repeats, confusion and gazing off are most likely related to the brain metastases, not the morphine he’s on now.
  • Dr R is not recommending another cancer therapy. I was a bit bothered by this but let me see if I can explain why he said that.
    • As a person who is in the physical condition that Frank is, that is – not very strong, not much appetite, not able to be very mobile – he will not only not handle new side effects well, but any benefits he could achieve are terribly minimal because of his current health status, and therefore, Dr R said he’d rather Frank be able to enjoy the quality of life he can, instead of being in even more discomfort.
  • His daughter asked if it would benefit Frank to get fluids like he was before as a regular treatment (he seemed to perk up when he got them in the past). Dr R said that actually could be a negative for him – if he isn’t dehydrated – because it could cause over loading of fluids. I had no idea you could have too much fluids but in his case, it could be a problem.
  • While Dr R realizes that people would like to know their prognosis, he can’t know for certain how long Frank will live. However, he did say that Frank will begin to decline rapidly in the next few weeks without further cancer therapy (medication), requiring more help sooner. Not just from me, but from nurses.
  • We will need to keep track of any new symptoms so that Dr R can be sure Frank is being kept comfortable and pain-free, but not doped up. Believe me when I tell you, there is a difference.
  • Dr R will make regular home visits to see Frank, saving Frank the stress of trying to get transferred there and back.
  • There will not be any more scans as we already know the cancer is progressing and the same with taking blood. They’re already treating him for current symptoms so they won’t make him give blood unless some other symptom comes up that they need to treat.
  • We’re going to set up the dining room as Frank’s bedroom. Tomorrow (Thursday) is our meeting with the hospice nurse/team where we’ll sign papers and get the ball rolling on getting all of the necessary equipment for Frank delivered and set up. Dr R has indicated that whatever Frank is using at the nursing home, he will get that at home.
  • Tomorrow (Thursday) we’ll also find out exactly what kind of nursing care he will need and receive while on hospice at home.
  • As part of the hospice care, Frank will be able to talk to clergy if he wants to, have music therapy, massage therapy, talk to counselors. Anything he needs, he’ll get it and they’ll come to him.
  • I will be postponing my surgery (what’s a few cramps compared to being able to spend time with Frank? The uterus can come out later!).
  • Frank is adamant about me continuing with school, it is my future after all (literally). However, other than to take an actual exam in my classes at the school, I’m hoping to be able to do whatever work I need to do, from home. My instructors have been wonderfully supportive so far, and they understand how important this is to me. If I quit now, Frank would be simply devastated, not to mention hugely disappointed in me. He knows I’m not a quitter and I’ve come too far to let this go – I just have to finish this semester and an Excel class and I’m done. What we’ll need to do is have someone here when I’m at school, otherwise, I plan to be here 24/7 with him.
  • One incredibly important thing that will benefit Frank is visitors. Seriously. And don’t think it will be a bummer of a visit, the man still has his sense of humor and would love to shoot the crap with those who visit. He said tonight he’s so happy that none of us have ‘bailed on him’. We said, why in the world would we? Well, I haven’t always been the nicest guy, I can be difficult. But we all told him – maybe you haven’t always been nice, but you have always been the most honest, in-your-face, loyal friend (and husband, I added). We aren’t here out of a sense of obligation, we’re here because we love you for being Frank. To that he did a sort of eye roll. ๐Ÿ™‚

I’m sure I probably sound clinical – again – about all of this but I kind of need to be right now. I’m not in denial, believe me, Frank and I are both very aware of what’s ahead and will process and deal with things as we move along. One thing that’s changed – even though his request is to not have a funeral service, I’m going to talk to him about agreeing to let me plan a memorial service (thank you to S for that suggestion), I know how important that is to so many people – he originally didn’t want to do something like that but I think it’s a good idea and will see what he says. No matter what, I will have a summer party and a campfire so we can honor his wish to place his ashes in the campfire. He’s always been so at peace when we’ve had a campfire so that’s why that is important to him, same with being on the water so I’ll probably save some ashes for Lake Superior.

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That’s it for now but my goal is to update the blog daily, or at least as I have information or something to say.

26
Jan
10

And Another Day Changes Everything

TB was admitted to the hospital this afternoon with pneumonia and dehydration. After I returned home from my out-patient surgery today (which went fine though I’m quite tired), I called his oncologist to give him TB’s symptoms and ask for advice. He told me TB needed to go the emergency room, and since he’s been unable to even get out of bed without help since Saturday night, I was to call an ambulance. It would be unsafe and foolish to try to make him leave on his own.

I feel so guilty for not doing this two days ago (brought him to the ER) but TB is one stubborn person – plus it seemed as though he was coming out of it – whatever ‘it’ was. But the cold should have been my biggest clue – the rattle in his chest didn’t go away so it wasn’t a cold.

But what’s done is done, and moving forward we’re going to work with a palliative care team, I’ll get that ball rolling with setting that up asap. In a nutshell, my understanding of what a palliative care team is – at least in part – is that it’s a team of people who will get to know TB and his case and help care for him, and what’s really important is that if I need to talk to someone on a weekend or at odd hours about an issue such as this one, I’ll be able to talk to someone who knows his case, and not having to talk to someone who doesn’t – having to explain all of this information over and over to someone who isn’t familiar with his case adds immensely to our stress.

We’re meeting with the oncologist tomorrow morning at the hospital to discuss his recent scan results from Jan 19 – that was on the agenda for tomorrow anyway, so we’ll just find out earlier. I’ll post an update tomorrow sometime.

In the meantime, feel free to send the dude some good karma vibes. He could use a few. I could use a pillow and a blanket myself, so that’s where I’m headed now.

Good night, all.

25
Jan
10

What A Difference A Day Makes

TB is resting comfortably. He’s talking, he said he feels so much better than yesterday. I gave him one of his pain pills last night and a Prednisone (per a suggestion from a very well qualified nurse) and had him drink some water. He slept like a baby from 5pm yesterday until 4:30am this morning, I checked on him and he said hi and that he was feeling so much better. I just checked him now (it’s 8:30am) and he still feels good.

I also checked him last night a few hours after taking his meds, at which time he said, see, I told you I was getting better. I’m wondering if the thought of being in a hospital nudged him a bit to help himself. ๐Ÿ™‚ He said after the last visit that he had no interest in going back. We may still need to see his oncologist today rather than going to the ER – if for no other reason than to get fluids – but his breathing sounds normal, he’s talking, he’s moving himself around. That’s an amazing turnaround if you ask me.

Will update as things change – for the better or not.




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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