Archive for February, 2010

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

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.

09
Feb
10

When You Can’t Control Anything Else…

…cut and color your hair. It grows back and you can always re-color it. It’s so short that I think I shocked TB when I saw him Sunday. Of course, I let the girl at Regis style it so I had side bangs (think Kate from Jon and Kate +8 and the hair was winging out everywhere – all 1.5 inches of it – and I’ve been working for years trying to NOT have wings!), now it’s much better, see end of post.

I’ve been able to keep up with school despite, or in spite of, everything that’s been going on. TB has been adjusting to his new digs but I have to admit I wonder if it’s been rougher than probably normal for a new rehab patient, or if it’s just TB and his personality that makes it seem more difficult.

I’d like to say something before continuing with today’s blog post. TB has never actually read this blog, he has no interest in it, other than he knows it’s a way for me to express how I’m feeling and likes that I do it, it’s also morphed into a place for me to keep family and friends updated on his situation. No one person, no particular situation has caused me to bring this up, I’ve just seen how the blog has changed and feel a need to comment about my observations.

Here’s the thing – I may say things in my entries that could offend or conflict with other people’s beliefs or feelings – but these are my feelings, my thoughts, my way of dealing with what’s happening in our life. That is the main point of the blog. I need a place to vent and therefore, I hope others understand why I say what I do. You don’t have to approve of what I write, you don’t even have to like what I say, but I would hope that youย  just respect me for having the willingness to be honest with my feelings.

Okay, on with the post. ๐Ÿ™‚

As those who know TB well, to say the least he is a rather opinionated individual. He’s also the most honest, in-your-face, intense, funny, sincere, loyal, loving (but it takes a while to earn that) – and sometimes redneck – individual I’ve ever had the pleasure to meet (and how lucky I am to have married him). And he’s not apologetic about ANYTHING. Though sometimes he should be and I let him know when he should, at least with me.

Since TB was re-diagnosed with cancer in September 2008, he’s gone through this thinking process that I find incredible. He’s done a lot of soul-searching, though he’d never probably tell his friends or anyone else some of the things he’s shared with me and I likely won’t share much of that here myself.

However, some of what we’ve talked has to do with how he wants to have his life celebrated after he passes, what he’d like to have done with his ashes, that he does not want a traditional funeral in a church, what he’d like to wear to the crematorium (I’m not kidding…right now he’s thinking his cool Hugo Boss suit, which I must say makes him look quite dashing, not to mention sexy) and which crematorium he prefers (Edina, not Minneapolis!).

We’ve talked about what to do with “The Beast”. We have a 2004, Ford F150 Heritage truck with an 8 foot box. It’s HUGE. Hence it’s name. He’s told me that he’s going to have MLaS. sell it. I don’t drive so obviously I don’t need it but I also don’t want to be taken advantage of in a sale and MLaS. will make sure that doesn’t happen.

We’ve talked about what my life will be like after he’s gone – will I be financially secure, will I be able to keep the house on my own, etc.ย  I’ve assured him that I will do what I need to do to live in this house, the house that right now is ours and eventually it will become just my house.

I’m not worried about the house, not in the least. My mom – the most selfless and kind individual on the face of the earth – taught me that no matter what life hands you, you deal with it. You don’t back down. You don’t feel sorry for yourself. You do what you have to do to get what you want or need and find a way to keep it. No one can do that for you, you have to take care of you.

TB and I have also had many other conversations about things I never thought I’d be discussing in my life, but I’m not ready to talk about them yet. If at all. The conversations have been a mix – insightful, intriguing, uplifting, sad, and funny.

As for the adjustment to the rehab center for TB, I think there are a number of reasons it’s been difficult.

  • TB is more outspoken than most – he isn’t a ‘yes’ man, just because someone says this what you need to do doesn’t mean he’ll jump on the bandwagon. He needs to know why and process it.
  • TB prefers a schedule – if you come to him and he is taking a nap and you want him to do physical therapy, he’s going to need a few minutes to just wake up and be ready to talk, not to mention need a couple of more minutes just to sit up, therefore, he’s losing his PT minutes (they have 30 mins per patient) because you, the physical therapist, haven’t given him fair warning when you’re coming.
  • TB actually knows what his limits are, he’s not being a wuss, he enjoys PT. But he also knows what he can do without experiencing set backs or pain after PT. Some discomfort he knows he should experience afterwards, but actual pain?? Not supposed to happen.
  • He is a patient with cancer. I don’t know if the physical therapists are aware of the fact that while TB is there for PT for his leg and recovering from pneumonia, he’s also lacking in stamina and strength due to cancer. He can’t be treated like everyone else.
  • On the flip side, he can also be a bit harsh and impatient (um, knowing when PT is happening would help immeasurably) when speaking to the PT folks. Hopefully, if they can all come to a common ground, the adjustment will get better and the PT people will be more satisfied with his progress and TB will be less argumentative.
  • Lastly, with the change to morphine from the oxy’s (oxycodone/oxycontin), he is far more lethargic. I talk to him on the phone and he sounds stoned. Seriously stoned. I’ve mentioned it to him once and asked if he should lower the dosage but he said that would set a precedence and therefore, if he needed more down the road, it would be hell to increase the dosage.

So that’s where we’re at right now. I have a bag of clothes I need to bring to him tomorrow, along with a 6 pack of mini Mountain Dew’s and some Heath bars. But I don’t know when I’ll be able to leave as I need to hang out to wait for a package from UPS – turns out the item I ordered (laptop) needs a signature. Who knew?? I would have gone to the store to pick it up if I had known that. Grrr.

I’ll get homework done during the day while waiting for UPS and laundry. I just hope they show up in the early part of the afternoon. Cross your fingers…could use some luck on this one, okay? I haven’t seen him since Sunday so I’d really like to be able to go over tomorrow. ๐Ÿ™‚

Good night, ya’ll.
New Color / New Cut

04
Feb
10

Somewhere Other Than The Hospital

What a week. On Monday this week we didn’t know where TB was going to go from the hospital, nor did we know when. It all happened on Tuesday.

I also became sick (turns out it’s just a standard stupid cold/cough) and just didn’t have the energy to be there on Tuesday – in fact I was going to go to school but felt too lousy so I didn’t. In the meantime, TB got his transport papers. ๐Ÿ™‚

He’s been transferred to a facility where they can help him with rehab. It’s actually a facility that covers quite a range – from assisted living to care centers to transitional care to respite care. I’m told it’s a lovely place; I haven’t been there yet because of my cold but I will be there tomorrow (Friday).

I’ve talked to him numerous times on the phone since he got there, he told me today that he was going to tell the physical therapist team that they need to back off a bit. While TB has great enthusiasm he also recognizes that when he overdoes it (which he has in the past and has paid for it with a lot of unnecessary pain), it’s not a wonderful experience. He’s well aware that his muscles pretty much don’t exist so he has a lot of work ahead of him, but let’s be realistic about the level of exercising.

The discharge out of the hospital took a lot longer than a discharge usually does. While in the hospital, TB was switched to a PCA morphine pump for pain but he couldn’t be on that where he was going. The pharmacy needed to formulate an oral option for him before he left based on how much morphine he had been using, which means they needed to have him take the new oral formula to see how he would react. Was it enough, was it too much – if it wasn’t right before he departed he could be in too much pain or too looped up to do anything. Unfortunately, that took hours and hours…

All day Tuesday he had two friends there to go through the boredom (ha ha) – thank you to M & S. Meanwhile, I put together his duffle bag with clothes and slippers, plus other things he would need at the facility (walker, cane, meds, back scratcher – he loves that back scratcher plus it doubles as a tool to reach things!, etc). S came and picked all of that up and brought it to him. I wish I could have been there but at the time I didn’t know if I had strep or not so I didn’t want to risk it. Though with him on the ton of antibiotics he’s taking it probably would have been okay, I’m just not willing to risk it.

As for me, I’m doing OK. Not great, but OK. I’ve got a stupid cold as noted, plus today was a doctor appointment and I’m off to school momentarily. My hysterectomy is scheduled for March 2 – it will be done on an outpatient basis (yeah!) as they’re only taking the uterus and not the cervix – what’s nice about only taking the uterus plus the way he’s doing the procedure, is the recovery time will be much quicker. I’m hoping TB will still be at the facility at that time because I won’t be able to take care of him for a couple of days. But we’ll figure that out down the road.

As he and I keep saying, it’s Cancer AA. One day at a 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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