Sunday, December 31, 2006

Compassionate Care Hospice, Maybe?

This week we met with two RNs from CC Hospice. I had talked with them in advance about doing blood draws, and they said they would, although their objective would be to treat the symptoms, not the numbers.

I don't really understand the difference. Jim low sodium and high ammonia and high billirubin and high kidney values are all REASONS for his diminished mental status. So which track one takes with treating the symptoms depends on the numbers. But what do I know? I'm an accountant.

One of the nurses spoke pretty knowingly about liver failure and how the final days play out. I don't think Jim or I wanted to hear that, but we probably needed to.

Jim, of course, refused and still refuses to sign up with Hospice. I called the intake counselor back, and she said it was clear that Jim didn't have the capacity and that I could sign him in, especially given I have power of attorney. I really don't want to do it that way; I want him to be a full partner in the decision, but I will do what I need to.

Got another bill for Patrick's time. $1K for two weeks, 7 visits. We really need it, but I do have qualms about affording it. We have now used up the $1.5K grant the cancer center promised me for this. I need to work on looking at Jim's retirement assets, and how fast this level would spend those down.

I spoke to my major contractor about work this upcoming busy season. I update accounting publications for a national group. The publications director agreed to move 3 of the 5 more complicated publication to another author and leave the 2 easier ones for me. I agreed to hire day care for Jim 3 days a week. That would be my cost, to allow me to work. I also have a major book in process that the publications manager agreed could be put on hold until after these 2 products.

So I will have some income in 2007.

I am feeling OK, just sleeping alot with Jim. I think it's depression; it's so hard to watch him go through this.

We have a new night care person in tonight--Silas. He remembers us from when Jim was in Shipley Manor. Silas even remembers Jim's room number. We don't remember Silas, but he seems like a very nice man. Like Patrick, he is from Kenya. We'll see whether he can fold a fitted sheet! I already know he can wash the kitchen floor.

Now that it's December 31, I can say happy anniversary to my diabetic cat Maxwell. He has been off insulin/diet controlled for one year now. I wish there was the same "cure" possible for his kidney failure. The poor thing is getting so skinny from that wasting disease.

I am still struggling with trying to get Max's diabetic littermate Ennis regulated on Levemir.

Happy New Year to all!!

Monday, December 25, 2006

My Christmas Thanks

Thanksgiving is the usual day for thanks, but my favorite holiday is Christmas and that is when I reflect on what I am thankful for.

I am thankful that Jim is with me. His dementia with his end-stage liver disease is severe, but even though he is not lucid enough to know it is Christmas, he knows me and loves me. I pray he can somehow recover at least some of his abilities, and for Christmas, I ask all my friends to say a short prayer/wish for the same thing.

I am thankful for Max, Ennis, and Lily. I am thankful that Max is in remission, and even though he is failing with his CRF, he is still just happy to be here. I am thankful that Ennis is starting to respond well to Levemir, and that Lily is finally putting some weight back on.

I am thankful that even though I lost Bailey this year, he was an incredibly gentle soul who will have a place in my heart forever.

I am thankful for the handful of local friends who have been helping me with Jim. They stay with him to make sure he is safe while I do necessary chores outside of the house. Of them all, the best is Liza, who calls or comes over almost every day to check us out. If I had a daughter, I would want her to be Liza.

I am thankful that I am now calling myself a breast cancer survivor. I have my final surgery in February, and hope to be completely recovered from all the treatments by mid-2007. It would be nice to get full feeling back in my fingers and toes.

I am thankful for the dozens and dozens of friends I have on the FDMB. People who help me find information to deal with some of my daily challenges, and those who support me with hugs and PMs of encouragement. I especially appreciate those who have lost beloved furries recently who take the time and effort to reach out to me. I don't want to name names, because I would certainly leave someone important out. But you know who you are, and please take this as a very personal and heartful thank you.

I am thankful for my brother Les and his wife Donna in TX who are my rocks. They are ready to come help me whenever I have the need. I am thankful for Annie from Harrisburg who came to help me during my 2nd mastectomy and Betty from FL who came to help me while Jim was "dying" in ICU. I can't even get close to the emotions I feel about their help and concern.

I am thankful for Patrick, the young man from a private-duty organization who stays with Jim 4 nights a week. Jim and Patrick have formed a special bond, and I can't imagine going through this without Patrick.

You all are my gifts, and I envision you all wearing brightly colored bows on my mantle this morning. Thank you so very very much!

Saturday, December 23, 2006

Vitas Hospice a Bust

I am getting to the end of the Home Health Care rope for Jim. The PT guy has pulled out, and the nurse says she will pull out in no more than 2 weeks.

Oh, my, we need blood draws from the PICC line to check his values to adjust medicines. We need someone who can take a blood pressure reading, because my machines can register him.

I had a meeting with Vitas Hospice, and they are not for us. Sister Catherine said that they would not do blood draws. “What’s the point? We aren’t going to intervene with medication changes to delay his inevitable decline.” (What’s the point? To give him a functional mind for as long as we can.) Jim was sleeping at the time, and the Sister said he was comfortable with his passing, or he would want to go into the hospital. She said the problem is mine; that I am the one hanging on and fighting the inevitable and perhaps causing him stress and discomfort by doing so. She implied that I was in denial that he had given up.

Maybe she was right. I don’t think so. I believe Jim wants to fight, with what will and energy he has, and refusing a hospital stay has nothing to do with that.

Jim and I talked later about what the Sister said, and it seems he understood and agreed that he wants to live, but he wants to live here and not a hospital or long-term care facility, even if we have to go 100% private-duty care. We talked about maybe the need to sell his condo to finance that. He agreed that the value of his fully-paid condo was in his “budget plans” as financing if he needed long-term care.

God, I hate to even think about selling his condo because he loves his home; I’ve never known him happier than there. He was proud that it was furnished and decorated like a “real home.” He was so independent and could do whatever he wanted whenever he wanted. He could sit in his chair for hours in the morning reading novels, and watch Phillies baseball on TV almost every night during the season.

I spoke to our lawyer yesterday about changing my will to set up a trust to take care of Jim on a private-duty basis. That really touched Jim, and he started crying. I told him I was committed to keeping him in a private home and as happy as he could be. On the hepatitis chat Board I joined, there are several men in end stage liver disease (ESLD), some waiting for transplants, some not, who are surviving years with this disease.

Sister Catherine said the kind thing about ESLD is that those who pass from it usually do so in their sleep. They just don’t wake up. Now I am watchful whenever Jim falls asleep. He just did that a few minutes ago on the couch with his cereal bowl in his hands.

I don’t know how to wrap my head around this. I don’t know for sure which road Jim would want me to take for him, except that yesterday he said he wants to stay with me and love me for a very long time. I told him that he always had promised me he would live to 84, as both of his parents had. He just hugged me and we cried.

Some have suggested I have conversations with other hospices. Their philosophies on what “end of life care” means may differ.

Someday, in this morass of a mess that I call an office, I will find the copy of our wedding service and vows and post it. It was very powerful. We got married at sunrise on Virginia Beach, the place where we met and, over time, became part of one another.

I want Jim back.

Wednesday, December 20, 2006

The PICC Line Stays

Jim’s GI DR called last night and insisted the PICC line be removed. He said there was too much potential for infection. He asked who wanted it put in and why. I gave him Jim’s GP’s number. The GI DR also wants to see Jim the first week or two in January.

I talked to Jim’s GP this morning. He said he had an enlightening conversation with the GI DR and that I need to be vigilant about restricting Jim’s fluids. He said he learned that fluid restriction is the key to managing Jim’s sodium; not manipulating the meds. He said the GI DR also agreed to leave the PICC line in until Jim no longer needed close monitoring of blood values.

I got a jar and measured 1200ccs into it and marked a line. I then put in volumes equal to the tea, cereal milk, juice, yogurt, and water for pills Jim had this morning. Yowza!! It amounted to almost 2/3rds of Jim’s daily fluid allowance. Yes we have to cut way back. But the hospital DR had said only clear liquids counted; he said I didn’t need to count things like jello, yogurt, milk, and Boost. GP says to count everything. (I didn’t ask about fluid rich fruits like grapes and oranges.)

Jim was accepting of the further fluid restriction. He handed over his daily bottle of spring water without a whimper.

Jim will get another blood draw tomorrow.

Patrick was here overnight. I got up at 5:45 am and found the two of them watching CNN with the volume way up. I asked whether they were having a slumber party. Jim refused to let Patrick or me clean him up.

I am hoping that in a couple of days, this renewed effort at fluid restriction will increase Jim’s blood sodium and help to reduce the mental confusion.

I ordered Jim a wonderful Christmas gift. He is so cold from the low blood pressure and temperature. I found a pair of wheat slippers that I can warm up in the microwave. At present, I use the wheat bag I received from Martha to heat Jim’s hands. The house heat is at 74, the fireplace is blazing, and he has an electric heater going. I wish he would wear the chemo cap that Cat’s Mom knitted for me, but he thinks it’s goofy.

I’m fine. The radiation burn is gone; just the skin thickening and tightness. I tell you, my faux boobs are never going to sag. I saw my GP on Monday and she said the retest on my liver functions and white blood cell count showed them all in a normal range. I still may have the enlarged liver and tiny “image” on my liver, but that’s for the GI DR to deal with. She asked me to take anti-anxiety meds BID (not PRN) because I lost 10 pounds in 2 weeks from being too anxious about taking care of Jim to eat. Maybe I shouldn’t have given all my size 6 clothes away a few years back.

Patrick won’t be here the next two Sunday nights. Because the Mondays are holidays, we would have to pay double time. And, we don’t want Patrick away from his family on holidays. I am still thinking about having an open house for a couple hours on New Years Day so Jim’s friends can visit for a brief time with him.

Saturday, December 16, 2006

The PICC Line is in

Jim's PICC line is in. He was shocked at how easy the procedure was, and he and the 2 nurses and the radiologist joked and laughed around the whole time it was being done.

I treated Jim to a cheese steak sandwich with ketchup as a reward while we were out. Blew his dietary sodium budget for about 3 days!!

He came home a little confused about the line's purpose and care, and refused to let the home health nurse draw blood from it. I had to call back to the radiology nurse to clarify. Jim was happy to get a blood draw without pain.

The good news was that the blood draw showed he hasn't lost anymore ground on his blood sodium level. Still low but no longer dropping.

The bad news was that the gastroenterologist called in the afternoon, three days after I placed a call to him, to recommend against a PICC line because Jim is susceptible to infection. We'll have to be extra careful with its maintenance.

One of the Home Health nurses taught me today about flushing the ports on the PICC line. Piece of cake. Has to be done every 24 hours.

Jim slept in until 1 minute after Patrick left, so I got to get him up and help his with morning cleanup. His appetite is off, and he seems despondent and bored. I played one hand of Go Fish with him and he beat me. I asked him to walk the stairs and he refused. I told him we WERE going up the stairs today, and he had to choose when, and he finally agreed to it and did very well. He even took a few steps outside the front door for fresh air.

Where is this road leading us?

Friday, December 15, 2006


I am taking Jim to the St. Francis radiation department in the morning to have a PICC line installed. This will allow the nurses to draw his blood without using a needle. He's very anxious about having the procedure.

Jim's PT David said that next week is likely the last week of therapy; that he will have taught Jim all he needs to know to accomplish his goal of climbing stairs. Then it will be up to Jim and me to continue to strengthen him. I wish I could find ways to motivate Jim to exercise. I know he doesn't want to because he doesn't feel well, but it is imperative to his wellbeing, not to mention his low blood pressure, that he be as active as possible. David is not available for private-duty PT, but said he would try to think of someone to recommend.

I don't know how long the nurse intends to stick with us. The bath aides are still pretty much MIA. One was supposed to come today at noon, and called at 12:45 to say she was running a little late. Well, yeah! By the time she called, Jim and I already had finished cleaning him up. In the 22 days since he has been home, Jim has only received bathing assistance from this agency's aides twice. Jim calls them "as useless as tits on a boar hog."

Patrick is with Jim right now. It's amazing how Jim likes and trusts this young man. We were truly lucky to have found him.

The DE Hospice Transitions program has finally found a volunteer who will sit with Jim on occasion. Jack. He is supposed to be calling me to set something up. Hopefully, we can get a routine down where Jack comes in for 2-3 hours at a time at least once a week so that I can get to the grocery and Target.

My radiation burn is lessening. The irradiated skin is really tightening up; the "scarring" I was told would happen.

Wednesday, December 13, 2006

Patrick's Wife is Sick

Patrick showed up at the appointed hour last night, but then had to leave to take his wife to the hospital. Kidney infection, he said. He also had to deal with his 19 month old daughter. The business owner offered to come sit with Jim, but I said no. I am so tired this morning. Jim wanted up at 6:30; I got him up and gave him a small breakfast and fell back into bed. Now he's back in bed (at 9am) and here I am. This will be a disjointed day. I still have to give him his morning meds. This on top of him starting to feel better yesterday,

I spoke to the home health agency; they help to maintain IV meds and PICC lines for their clients. I talked to Jim's GP, and he refused to treat Jim IV at home, but agreed to a PICC line (for blood draws) if I could find a surgeon to put one in. He again said Jim should be in the hospital. I hate this guy.

It's starting to look alot like hospice.

I found a "chat board" for hepatitis. It looks like most people there are caregivers to folks with end-stage liver disease, like Jim. It's a very slow Board, so I may not be able to pick up much. Bet those caregivers are doing something other than hanging out on the Internet!!

A good day to all!

Tuesday, December 12, 2006

Here's What I'm Thinking/Update

Yesterday the DR said Jim might have to go back in the hospital for IV treatment/monitoring. Jim said emphatically today that he is not going back. I asked my PT Bruiser today whether hospice does IVs at home. She said yes. I started thinking about moving Jim to hospice to get a higher level of medical care at home, and hiring private duty PT for him. I have to talk to his PT David to see whether he does any private-duty work. If he does, it would likely only be on the weekends, so that may not be enough.

(I guess I also should ask the home health agency whether they do IVs.)

I would likely choose the hospice (Vitas) that said they try hard to treat at home rather than send someone to the hospital. The intake person said that their philosophy is to keep end-stage patients at home, even if it takes 24-hour care from them.

Jim is almost the same today as yesterday; maybe a touch stronger. I worked him hard with arm and leg exercises on the couch to try to get his BP up. After lunch, we walked the 6 stairs up and down once. Don't tell him but on the 4th stair up I thought I was going to drop him. I told him to push down on his right leg to bring his left foot up to the next step, and kept pushing himself back. I need to ask David what to do to prevent a fall. Going up the stairs, Jim is above me and has 50 pounds on me; I not sure I could push him forward. Jim is napping now; the stairs wore him out. I hear him snoring on the monitor.

Jim joked around a little today, so that's a sign he's feeling better.

I am starting, I think, to kind of, sort of, maybe understand the relationship between blood sodium and dietary sodium. Jim has low blood sodium and this page seems to describe it--hyponatremia. It's his water intake that is the problem, although we have him on a severly restricted fluid intake diet. It also explains why the DR is messing with Jim's directic medicines. It also adds to Jim's mental confusion, like we need that. But it seems to me we can mess with the diet a little. The bottom line is that it all comes from his failed liver, and the ever failing kidneys he has.

I might try some electrolyte replacement fluids, instead of the protein drinks I have been giving him. Although the DR and nutrotionist were keen on the protein drinks (Boost, Ensure), from what I've read the less protein in his diet the better. His body doesn't process protein well; it needs carbs for sustained energy.

I saw the radiation oncologist this morning about my burns. He said it looks like I am through the worst of it and it is starting to heal. PT Bruiser suggested I cut away the arm hole of the little boy A-shirts I am wearing so that there is less abrasion to the area. DR did give me a scrip for pain medication.

Oh, and yes, we are getting Patrick 4 nights a week. Tuesday (today), Thursday, Friday, and Sunday. Excellent!!

I Dropped Jim

He was ready for bed. We stood him up at couchside and waited a few seconds to make sure he wasn't faint. Most of the way to the bed, he stalled. I was behind him so I didn't see him start his "mini seizure." He started to go down, so I wrapped myself around him and fell under him onto the corner of the bed. He was a little annoyed that I "let" the walker hit him on his face.

Tonight in bed, he is having spells just going from a lying to sitting position.

Monday, December 11, 2006

I have a Surgery Date

I will have my final (hopefully) surgery on February 9. This is the surgery to remove the expander implants and insert silicone implants, and to give me nipples. It will be an outpatient procedure at the SurgiCenter (not sure which hospital), so no overnight. My brother Dave is coming up from the Washington DC area for a few days to watch over Jim and me.

Dr. Boob showed me the implants today. He said that the choice of silicone implant style was recently reduced. Apparently 3-4 weeks ago, the FDA re-approved silicone implants for cosmetic purposes (not just for breast reconstruction, as was the case when I started all of this nonsense). But, an unexpected requirement of that re-approval was that only implants that had been in the marketplace for at least 10 years could be used—for any patient. There was a contoured implant that Dr. Boob liked to use that had only been in the marketplace for 5 years. So now I’m going to receive the plain old round implant.

That’s OK, because Dr. Boob said the contoured implants, which were teardrop shape, could shift under the skin and a woman could end up with the “big part” of the faux boob under her armpit. No thank you. If anything could go wrong with me, it will go wrong.

Dr. Boob said my radiation burn was worse than average, but not the worst he’s seen. Consequently, I made an appointment to see the radiation oncologist tomorrow. Dr. Boob also said that he did not expect an infection to result from the burn.

Dr. Boob has a machine that he says reduces inflammation. I forget what it’s called—something “Wave”—and for 30 seconds, it pulses a bunch of small yellow lights. Dr. Boob said there have been studies showing this Wave machine helps radiation burns, and that I should tell the radiation oncologist about it—maybe they would in time get one. Dr. Boob said I could stop by anytime, free of charge, and use the machine. The problem is getting a Jim-sitter for the 45 minute round trip to Dr. Boob’s office. We’ll see.

I spoke today to a social worker in the Cancer Center. They will help me to the tune of $1500. I have to provide invoices and paid receipts for Patrick’s time or for utilities. This is so great. Dr. Cutter started this ball rolling back when she first heard about Jim’s health. At the time, though, I didn’t need the help, because Jim was in the hospital.

Jim’s blood draw on Saturday showed that his blood sodium continues to drop. According to his GP, this is not something I can affect with diet. The DR is mixing Jim’s meds up a touch to try to raise the blood sodium. And he ordered more blood work for Thursday. Jim has no veins left that the nurses can find; I may need to take him out to a lab for a phlebotomist. I wish the home health agency had one they could send in.

The DR also said that if the med change doesn’t straighten things out, Jim would have to go back into the hospital. A place where he can get what he needs intravenously and be monitored. You should have seen Jim’s face drop on that one. Please please meds do your magic.

Jim is having a rough day. This morning, his blood pressure was so low I couldn’t get it. The PT guy got 98/70 before exercise and 110/80 after a strenuous (for Jim) workout. His temp was in the 92 range. When he stands up, he gets faint. Some of these events are more mini-seizures than fainting, where he goes rigid and shakes and his hands lock onto the walker. He has trouble talking when one of these events is coming on. We are working out a system where I ask him if he is OK, and when he doesn’t respond, I say if you’re in trouble, say “help.” He can manage the single word signal so that I know and I immediately set him back down.

Tomorrow, John K is coming in to Jim-sit. John is the one who helped me get Jim into the house when we came home from the hospital on that rainy day before Thanksgiving. How long ago that seems. John being here will allow me to go to the radiation oncologist, PT Bruiser, the post office to mail holiday packages, the bank, and Target (we need cat litter desperately).

Ennis seems to have broken glucose toxicity. It’s his 9th day on Levemir (thank you Julie) and he was in the lower 100s at +8 and +9. I have a +11 coming up soon. Funny, though, he doesn’t seem to be feeling any better.

Thank you all so much (as always) for your continuing thoughts and prayers for us both.

Sunday, December 10, 2006

My Heart Goes Out to Robin

Robin is someone on the FDMB. She is a brilliant woman, and I didn't know her before her breast cancer. She is now in considerable trouble. See this link. A few weeks ago she had a seizure while driving her elderly cat Marie Pearl to the vet. The ambulance got her; the vet's husband got MP, and the result was a finding of a tumor in her brain. The night she came home from surgery she had to put MP down. It does get worse; she says the tumor in her brain was not benign.

There has been so much sorrow in my life lately. Jim and me. Robin. Julie losing Smokey (one month today). This is December; my favorite time of the year because I am a huge Christmas fan. My apologies to my Jewish friends. I am not religious; it's just that I was raised this way and I love the lights and the decorations and the smells.

No tree this year. No decorations. We didn't have much last year either because I had found the lump and things drug on before I could see the breast surgeon.

Max was diabetic this time last year, although on his way to remission. Ennis is diabetic now and not responding to the insulin. Max is CRF and doing really lousy. He's lost so much weight.

I washed Jim today and noticed his right foot was swollen. Edema. Later in the day, I noticed his belly was bigger. Ascites. These are signs of him retaining fluid. I called his GP, who wanted to know Jim's weight. We haven't been weighing Jim. DR held on the phone while I weighed Jim. He's lost 10 lbs since he left the hospital. DR asked how big Jim's belly is. I responded that it is a cantaloupe bigger than it was yesterday. DR said to give him an extra aldactone.

Jim was angry I called the DR. Screw Jim. If he wants to stay out of the hospital, I have to be proactive.

We both got our hair cut today. I didn't have much to cut, but I got trimmed around my ears and neck. Christine, a friend's daughter, is a professional stylist, and she was kind enough to come to the house to do it. She also put neon red "hair glue" on me. What a mess! It is glue! How spikey youngsters put up with this in their hair is beyond me.

Julie S came over today and Jim-sat while I went to Trader Joe's. TJ's has lots of marvelous food, including for "special needs" diets. I found zero sodium whole wheat bread and two types of cookies within his dietary requirements. Low sodium maranara sauce, which he had for dinner and scarfed up. I told Jim he had to stay healthy and not go back into the hospital because of the $150 of food I bought at TJ's today!

Jim was so pleased that he had a PB&J sandwich for lunch. I was so pleased it had no sodium in the bread, the PB, or the jelly.

Hey, Steve, I heard Jonathan Coulton's "Code Monkey" on National Public Radio today. I'm sure you know all about it. (Others: Click on the red "Listen" near the top of the page.) What a hoot! I thought of you the whole time it was on--once I figured out what a code monkey was. You never know what an accountant can learn when she really listens to NPR. Coulton has a great voice, and a great sense of humor. He kept me entertained all the way from the pharmacy to TJs.

On that point, the cream the oncologist ordered for my radiation burns was not a prescription. So why did this take 5 days? Jim and I looked at my burns today. In my armpit, I have burned through what appears to be 2 layers of skin. One more, and I think I'm in deep shit. The pharmacist warned me against an infection in the burned skin. CRAP! I don't need another infection. I see the plastic surgeon tomorrow; we were going to plan the final surgery. (Yep, I wanted to see the implants he is going to install.) I'm sure he will be very concerned and put me on ABs. If he doesn't, I still have a refill of the Amoxicillin he had me on before.

Patrick comes tonight. Jim (who is napping) keeps looking for him. Bless you Patrick!

Saturday, December 09, 2006

"Not Patrick" was not Patrick

Mimi. She got here a little late. She had trouble speaking English. She did the house cleaning well while I was gone 2 hours to the grocery.

There are very strange people at the 24-hour grocery in the middle of the night.

There are also very scarey people on the road at 2AM.

Mimi didn't help me bring in the 12 bags of groceries and 2 cases of bottled water. She sat on the couch downstairs. Watching TV with the sound uo while Jim tried to sleep. In her coat and hat, which she never took off.

She asked whether I wanted help unpacking, and when I said yes, questioned whether each item (even the canned tomatoes) were to go into the fridge.

I went upstairs to talk with Deb (my middle of the night friend) and Mimi ran up to get me because Jim was in distress. Distress? No, he wanted to go onto the commode.

Long story short, I told her at 5am (2.5 hours early on her shift) that she could leave. Why pay that much for someone who Jim is not comfortable asking for help?

And now he wants Patrick 4 nights a week, not just 3.

SIGH. I need sleep.

Friday, December 08, 2006

"You know....'re not going to get better before you get a whole lot worse."

Jim's GP's statement, as he was leading into a discussion yesterday about us calling in Hospice.

What a flaming asshole. Jim and I were both shocked. What bedside manner this fellow has. We explained to him our plan: we have interviewed 2 hospices; we want PT as much as possible for quality of life, and when Jim's PT David cuts him off, then we will consider our options; and we have private-duty Patrick (or "not Patrick," as Deb calls the substitute we will have tonight) three nights a week.

Jim has been doing really great the last couple of days. Yes we have those standing up, low blood pressure, fainting episodes--but for the most part he is chipper and energetic. Not so energetic that he goes out to get the firewood, but enough that he asks for a fire.

What a sense of humor he has when he is feeling better. We have been joking around alot.

Today I had PT David leave Jim upstairs at the end of his workout. I put Jim into the shower for the first time here. Wow, he needed it. He complained about the cold, so we need to work out something besides the ceiling heat lamp and the hot water to keep him warm.

I still haven't been able to get prescription cream for my radiation burn. It's been a delay with not in stock, no longer being maufactured, call the DR back for another cream, not in stock. The pharmacy promised something tomorrow. NOT delivered, of course--no delivery on the weekends.

It's like every little thing takes so much effort.

I thought about my wrecked car this afternoon and called the auto body shop for the estimate. (Took it in on Monday.) Oh, yes, sure, you want a copy?--we'll put it in the mail. Called the insurance company (my side of the claim) and they didn't know whether the other side (same insurance company) had accepted liability. Called the other side--didn't we talk about this (me: no), she's accepted liability and I have reserved a rental car for you, and by the way, how are your injuries? (I'm fine.)

I talked today with a woman from the company for which I write and update publications. Busy season coming up. I just have no clue how I might be able to do the products I have been updating for the past, what, 8 years. And there's the new publication I was writing that went on hold almost a year ago. She understands, and says that my position with the company appears secure in the long term. She asked about my finances, which of course are dismal.

My full time job right now is taking care of Jim. And he doesn't pay very well. He seldom says thank you, but he keeps the other side of the bed warm.

Today I agreed to $600 of repairs to my garage door opening system. One roller kept going off track, and I was getting tired of climbing up a ladder to fix it. That operational fix would have been only $250, but the fellow also discussed the safety issue of the very very old springs that lift the door. I've known the springs were not safe; I had them cabled when I moved into the house. I agreed to some sort of replacement system that I know nothing about.

Thursday, December 07, 2006

Small Victories

Last night Jim made it to the bedside commode 3 times unassisted. Well, I gave verbal directions twice. This is a huge step over, say, Sunday night when I was physically directing him and could not get him to turn or sit without many tries at it.

I found that out our local pharmacy delivers for free. So I won't need to find sitters while I pick up scrips.

Jim has to go out this morning for a visit with his GP. I'm going to try to get the wheelchair into the car to get him into the DR building. Wish me luck!

Wednesday, December 06, 2006

We Are Settling into a Routine--an Unpleasant One

Jim gets very regular feeding, toileting, and cleaning up.

I get nothing else done.

This is a full-time+ job.

Jim is getting more and more dependent. Jim won't even take the throw off his lap when it's time to get up to the bathroom. SIGH.

I know he doesn't have the mental capacity to understand what is really going on right now, and that I shouldn't get angry when he seems (what in a normal person would seem) lazy or using. But sometimes I do. Last night, during the third situation of him not taking the throw off in the course of 4 hours, I told him I wouldn't be able to take him to the bathroom until he took the throw off. He made a sincere but unsuccessful attempt. I picked the throw up and threw it on the floor. He looked like a punished child. I felt like crap. The only thing holding us together was knowing that Patrick would be here in another 1.5 hours. Jim insisted on staying up for Patrick to take him to bed. And after Jim was in bed, he asked Patrick to come get me so he could kiss me goodnight. I was crushed.

Bless Patrick. Unfortunately, he is not available again until Sunday. We will get a substitute on Friday, a woman named Bimpy, and I could swear that is a name we know from one of the hospitals he was in.

I guess I am getting into a pity party because I am getting a head cold (yes I take Vitamin C) and developing a radiation burn in my armpit and some broken, bleeding skin on my upper chest. I have been using Aloe for a couple of days and will call the radiation oncologist today for a prescription cream Robin suggested.

Well, the more I write here, the less I otherwise get done at my desk.

Bless you all.

Sunday, December 03, 2006

I called 911--Updated

Jim refused to go to the hospital. I'm in contact with the home health nurse and the DR. I'll get back with details later.

Update: Jim was lethargic and confused, would not eat, and even though he wanted to pee, couldn't. His temp was 95.2 and I could not get a blood pressure reading.

I called his DR, who said to call 911 and take him to the hospital. Called a couple friends, called 911, and 4 burly guys and one petite woman showed up. Don't know his temp, they got a faily normal BP reading, and took an EKG and said it had some weird showings. They also could not get a pulse at first.

Against their advice, he refused to go to the hospital. I can't continue to put him through weeks of that. Even though I have power of attorney, I agreed to let him stay here.

I called his DR back, and he was kinder,gentler this time, saying I should respect Jim's wishes and we would try to work this through. I told him a home health nurse was on the way, and he said to have her call him. They spoke, and she was to take a urine sample, and blood for 2 tests.

But she didn't have the stuff and had to go to the hospital for it. An hour later, she returned and when we went downstairs, Jim was gone. In the bathroom without his walker peeing, so no urine sample. I have a sterile jar for later.

The blood was hard to draw because his veins are so collapsed. But she finally got it. I should hear about that in maybe 2 hours.

This can't get much worse.

As Liza, who came over today said, I have to give him the choice of the hospital or hospice. This is, I'm sorry, just getting impossible.

It's Getting Really Sad Here

It seems like Jim is wasting away. He was a little clear minded right before he went to bed last night, but he's been there for 14 hours and I can't get him to come awake. He got up 5 or 6 times during the night to use the bedside commode, but could only handle getting to it twice. I feel like we are at a hospice stage, but he still wants PT. I think the therapist may soon say Jim's not progressing so his work here is finished.

Patrick the private duty aide came in on Friday night. What a joy he is. He's an IT MBA student, works in IT at the local cable company, and is going to help with Jim 3 nights a week. He's maybe late 20s or early 30s, and is from Kenya. He did the entire food prep, cleaning, laundry list I left for him and didn't disturb Jim or me. I slept more soundly from midnight to 3 am that night than I had since Jim came home. Patrick handled Jim's toileting 5-6 times during the night. Thank you Patrick. Thank you Deb and Robin for pushing me there. Patrick comes again tonight.

I called some local friends, Barb and Buzz, yesterday to see whether they could watch Jim while I went to the pharmacy to pick up some things. They came to watch the Army/Navy game with Jim. They told me to stay away for 2 hours--to take a break--so I went down to a local watering hole where the friend (Liza) who does my house cleaning was tending bar. Saw lots of friends who are very concerned about us. Recruited one (Julie) to do a little Jim sitting from time to time.

Liza changed her house cleaning schedule to come in on Monday so that I can go to PT and take my wrecked car in for an estimate.

Buzz, Barb, and Julie all have been through the pain of caring for a family member with an end-stage disease. They understand what's going on here, and Buzz said that many of our friends are staying away because they think Jim won't know them and they are uncomfortable with that. Jim's has short-term memory problems, not long-term ones. He knew Buzz and Barb and was very pleasant with them.

The medicare-paid home health nurse and aide are very disappointing. The nurse has "signed out," I think I might have told you, and the aide was to come yesterday, but the scheduler gave her the records for the wrong client. When we finally got this straightened out about 11 am, the aide was 45 minutes away and Jim was in no mood to deal with a new person. So I cancelled. Then I came to find out they have scheduled Jim's aide next week the same mornings that I have already scheduled Patrick for private duty.

And the Delaware Hospice Tranisitions program, which was going to supply a Jim-sitting volunteer, is MIA.

Good news, a friend is coming this morning to finish raking the leaves out of my yard.

As Steph, who is going through demetia with her father, said this morning on the FDMB: "I don't really want to ask 'When will it all end?' Because I don't WANT it to end.. but I want all the major issues to end."

Friday, December 01, 2006

Thank you all/Radiation Over/Jim Sitter Tonight

I want to thank you all, up close and personal, for all the help you are giving us. I know some of you feel you aren't doing enough because of distance, but please know that getting your messages, either here or by email, helps keep me grounded, which helps keep Jim grounded. And I have my telephone friends, who give me the warmth of the human voice. Thank you all so much.

Today was the last of my radiation treatments!! YESSSHHH! The techs gave me a graduation diploma. I feel a little sunburnt the last two treatments, but I fared better than many people do with it. Oh, and the radiation fatigue, but I took a one hour nap with Jim today.

I am neck sore from the rear end accident yesterday, but I am sure it's just a muscle thing and I will get over it soon. I got PT today, and was able to go to the grocery because a local friend John and Jim's PT guy were with him while I was gone.

Sure there were some scary things today. For example, this morning, before therapy, I left Jim on the bedside commode to go upstairs to make him tea. When I went back downstairs, he was gone. I found him in the bathroom without his walker. That's why when I took a nap, I laid on the couch with him with my legs over his lap. I do so feel for anyone else (and I'm sure there are plenty) who are going through dementia with a loved one. But as my PT said today, I have to realize that this is not Jim. At least at this time, Jim is gone.

We get a Jim sitter tonight from 11 until 7 in the morning. I will be able to sleep in my own bed with my kitties. The man, Patrick, is supposed to also do meal prep, light housekeeping, and personal care for Jim. Yes I have a list of things for Patrick to do.

Thursday, November 30, 2006

No Luck But Bad Luck

I was going to radiation this morning and got rear ended by an inattentive driver. I'm OK; a little lower back pain and a headache. She was OK too, but asked for an ambulance to take her to a hospital for a check. Her airbags deployed.

My car seems to have minor damage. The bumper is busted and there's a dent in the rear door. It's a station wagon. Her car looks like it is totaled.

So new chores--figuring out how to get this fixed. Hopefully we won't have an insurance issue because she had insurance through the same company as me.

For the time being, I'll drive Jim's car. I rescheduled my radiation for this afternoon. A friend is coming to sit with Jim while I'm gone.


The home health aide came in this morning to clean Jim up. She did a great job. Jim and I both liked her. But she warned us he might get a new aide each time, and I would have to explain all the instructions over again.

We are hoping to get an overnight companion for him tonight. The person also will do laundry and light housekeeping. YESSSSS! The kitchen floor is sticky and needs washing, even though it was cleaned on Sunday.

Wow, when I said we're taking this a day at a time, I didn't realize how long each day would be.

Jim lost his glasses and watch this morning and was very distressed about it. The glasses were on his face and the watch was high up on his now skinny arm.

And after I told him the accident story, he now thinks he was in an accident.

Well, he had a good breakfast. I have lost 10 pounds in the last 2 weeks.

I'm tired of the house heat being set at 74 because Jim is cold. He does have a space heater as well. And he's sitting on a heating pad.


No wonder I can't get Ennis's diabetes regulated.

Wednesday, November 29, 2006

Good News, Bad News

Jim’s been home one week.

We saw Jim’s GI yesterday. Friends helped us get him out of the house and I got him back in myself.

The GI seemed surprised to see Jim still alive. (Nothing said; just the look and tone.) The good news: Jim’s liver values are surprisingly good and that the state of Jim’s kidneys and other biological function are “not too bad.” The bad news: Jim is not sick enough to qualify for a transplant.

I tried to talk Jim into doing all the advance stuff one must do to determine transplant candidacy—heart stress test, pulmonary function test, interview with the transplant team and psychologist, and so forth—so that once he does get sick enough to qualify that those “to dos” are already “to done.” He refused. He seems to want to be content with the statement that a transplant is not in his future.

The DR is weaning Jim off prednisone, and is putting him on prophylactic antibiotics for the rest of his life. This is because Jim, having had one bout of spontaneous bacterial peritonitis, is prone to having repeat bouts. The DR said the mortality rate for that peritonitis is 50%, so that Jim was very lucky on the first one but we really need to try to avoid recurrences.

A return visit to the GI in 5 weeks.

Jim has a great in-home physical therapist. Jim is working really hard on his exercises, and the therapist is training him on steps. It is possible Jim may regain some independence, but right now his biggest challenge is his mental confusion. We have had two horrible nights in a row as Jim is incapable of taking direction when he is half asleep and needs to use the bedside commode. Luckily, he can sleep in and rest, but I have to get up at 6 to get to radiation. But only two more treatments.

At the insistence of Deb (Gizmo) and Robin (Peri) I called a non-insurance home health care provider today. We are working on getting a sitter in here 3 nights a week so that I can get some rest. It’s not cheap, but Jim has agreed to pay. If Jim improves, we can cut back or curtail later. The sitter will do incontinence care, personal care, light housekeeping, and meal prep. During the night, I can have him or her prep some meals in advance for Jim, like cleaning and foil wrapping potatoes for baking, making tuna salad and Jello, washing vegetables, and making fresh fruit salad. Laundry. Cleaning the night’s dishes. Mopping the kitchen floor. Feeding the hungry critters at 3am.

We may get our first sitter tomorrow night. Thank you Deb and Robin. I owe you big time for pushing me. The insurance-based home health care just isn’t cutting it. We might get an aide tomorrow, and she won’t do anything but bathe Jim and make his bed.

The baby monitor should get here soon, I hope. I ordered one from Target. I need it during the day and the sitter will need it at night.

The PT wants Jim and me to go up and down the stairs tomorrow. So I told Jim he would have lunch at the kitchen table. He loves the kitchen, so that will be special for him. It’s been over 3 months since he saw it.

I talked today with Medicare and Social Security. I need Jim to sign forms that say it’s OK for me to talk with them on his account. What a bureaucratic nightmare. I’m sure there are other places I need to talk to—his financial institutions and pension payers. I’ll get to that as the situation comes up. I almost couldn’t get Medicare to talk with me because Jim could not tell the guy his zip code. The guy finally accepted me telling Jim the numbers one by one, and Jim repeating them. How bogus is that?

I cancelled my therapy yesterday and tomorrow, but I am determined to go on Friday. I may need to ask a friend to sit, but I need to go. After the home health schedule gets a little more settled, I can schedule my therapy on top of their times, so that Jim is not alone too long.

Monday, November 27, 2006

Part of a Note I Sent to a Friend

I am scared for Jim. Saturday afternoon he started getting mentally confused, more than I have seen him outside of the ICU. He doesn't know the year; he can't figure the difference between the TV remote, the mobile phone, and his reading glasses; he doesn't know where the bathroom is. We spent most of Sunday in front of a blazing fire talking memories. He was lying on the couch with his head towards the fireplace and couldn't see it, so I brought a full-length floor mirror down to the room so he could see it. That gave him alot of comfort.

I don't know what to do. Lots of friends tell me I should be careful not to risk my own health, but that's a generality. I need specifics--step 1, 2, 3 stuff.

I know I should not use his behavior over 36 hours to judge where he is. But CRAP I don't know where this is going or what to do anymore. I've never lost someone close to me before, much less watched them whither away into a place they have never been. This should not be happening to him.

I cut back Jim's protein intake on Sunday, and I don't think he declined anymore than on Saturday. Although he cooperated with the menu, he wasn't real happy eating only vegetables and fruits all day. It took him over 2 hours to eat his lunch.

I would have called the home health care nurse, if I had any clue that she could do anything more (better) than I am doing. But she only met Jim once. She is scheduled to call me this morning (Monday) to talk about schedules for the week, so I will give her this info then and see how she reacts. I also am to hear this morning from the Transitions social worker. (Transitions is the non-medical program from Delaware Hospice.) Although she in not a nurse, maybe she has enough life experience with this kind of situation to tell me what I can do.

The only one who has seen this is XXX. She was so scared by it she called back in the afternoon to see how we were doing. XXX was walking through the room where Jim was, and he started talking to her like he thought she was me. Her opinion was that Jim has "relaxed" at home, so he is not showing the same gumption as he did at the hospital when the objective was getting home.

I'm afraid to go out to radiation this morning. I'll only be away from the house for 1/2 hour (well, a little more on Mondays because that's when I see the DR), but Jim can get into such trouble when he's alone for 3 minutes.

Sunday, November 26, 2006

Trouble in Paradise

Jim's mind started to cloud again yesterday. For example, he insisted it was 1906, tried to put the TV remote control into his glasses case, and tried to put clean socks on over his dirty ones. Jim and I discussed it, and he agrees that he is confused.

I need someone smarter and stronger than me to deal with this.

I am going to severly reduce the protein in his diet today. (Protein, which can't be well metabolized by his liver, turns into ammonia, which causes the encepalopathy.) I also slightly increased his lactulose, an ammonia-binding laxative, last night.

Thank God that Jim loves and trusts me, and isn't fighting me when he gets confused and scared. As long as I stay calm, so does he, and he will take direction from me.

I may need to cancel my therapy next week if this keeps up. I can't leave him alone for 2 hours while I radiate and exercise.

Saturday, November 25, 2006

Fun With Food

Learning new skills can be time consuming. We are trying to be methodical about Jim's diet.

Thursday, I soaked dried pinto and red beans so that I could make low-sodium chili for Jim. Friday, I cooked the beans, and for too long. So the plan changed to refried beans and brown rice.

I have never been good at cooking rice (except the instant kind). I made the mistake of trying a new cooking method--the microwave--as well as a new kind of rice (brown). Two thirds of the way through the cooking cycle, the rice was completely dried out pieces plastered to the bottom of the casserole dish. I discovered this morning I used the 1/3 cup measure instead of the 1/2 cup measure to draw the water. Made a huge difference!!

But the refried beans turned out well. Mashed beans, bean water, a little onion powder, a little Mrs. Dash, a little fake salt (although I don't think it's allowed), all mixed up and cooked down and served with a touch of shredded mozzarella and sour cream. Jim ate all that I gave him and said it was good. Woo Hoo! A new dish. Although Jim is a picky eater, he is being very forgiving about the need for him to control his diet.

Max and Ennis woke me at 4:45 am for breakfast. Jim says: "That kitchen is a hot-bed of activity." He does have a sense of humor, and he makes me laugh with those sorts of comments.

So I headed out at 5:15 to grocery shop. Our normally 24-hour grocery was closed. No sign about holiday hours. Sigh!!

Trying the chili again today. Jim's says he's getting tired of poultry.

Jim's assignment starting today is to keep a record of what he eats and drinks each day. I will try to develop a database/spreadsheet that assigns nutritional values to what he eats so that we can make sure we adhere to his dietary restrictions, including 2g sodium and 1200 ml clear fluids a day. We are accountants so we can be methodical when we need to be. After a few months, we should be able to hit the dietary requirements in our sleep.

Jim and I were exhausted yesterday after our meeting with 3 health care groups. We now have a home health agency, although we are not happy with nurse/aide/PT visits only 2x/week (when Medicare will cover a max of 3x/week) and not happy that the aide will not do light housekeeping or prepare food for Jim. We may need to change agencies once we get more settled.

The Delaware Hospice's Transitions (non-medical) program sounds great. The case manager social worker is going to try to find a volunteer to help me transport Jim to his Tuesday DR appointment, and find a volunteer to come in 2x/week to sit with Jim while I do shopping chores.

We also talked to a 2nd hospice (Vitas) even though we are not going with hospice right now. It's nice to know the differences in programs should the time come that we need hospice.

We feel like we are getting our ducks in a row, much better than when Jim came home from Shipley.

Practice makes perfect.

Thursday, November 23, 2006

Jim's Home! Happy Thanksgiving!!

Got him here ~2pm on Wednesday, the day before Thanksgiving. One of our friends, John, came to make sure Jim got into the house safely. Liza brought over welcome home balloons and a card. We are so very thankful for the thoughts, prayers, cards, calls, visits, and everything else everyone did to help us get to this point. A special thank you to Betty for coming to take care of us for awhile. We still are stunned with her generosity.

Jim looks so good, and ate well for me yesterday. He took his snacks on schedule, and ate a full meal of broiled chicken breast (marinated in a sugar-free italian dressing), baked potato, steamed brocolli, and grapes. He asked for a sugar-free yogurt as a bedtime snack. This diet thing might work out. I just need to find that site at the NIH that lists the nutritional content of meats and fresh foods.

Jim wants to manage the wood fire all day today. I'll try to set him up to do that, giving him something nonflammable to sit on in front of the fire as he pokes at it.

We see his Liver DR on Tuesday. So many questions, including whether he is a candidate for a liver transplant and if so where. I hate the thought of having to make frequent trips to a hospital several hours away, but we can do it.

I have a 4-day break from radiation treatments, and I can use it. I feel like I'm running on empty. Then, next week is the last week. 5 more treatments. After that, one final surgery to put in permanent breast implants and to put on "nipples."

Jim did talk to Delaware Hospice, and decided against being a hospice patient. We both want to continue to seek treatment, not just comfort. Most importantly, Jim wants continued PT, which DE hospice does not provide. But, that hospice also has a cost-free program called transitions, where they provide a social worker who can help with community resources and volunteers who can sit with Jim when I have to be out of the house for several hours. It sounds like it will be a great complement to home health care. The transitions intake person is coming to the house on Friday.

Also on Friday, we have an appointment with another hospice named Vitas. We wanted to understand how different hospices might have differences in their programs with regard to PT.

And lastly, we will have an intake session with St. Francis Home Health Agency. It is affiliated with the hospital that hosts the specialty hospital Jim was in. As before, Jim will get, as needed, a nurse, a personal care aid, PT, and OT up to 3 times a week. Now that we've seen great PT at Select Specialty Hospital, we have raised expectations for home-based PT.

We were sent home with minimal medications. The hospital DR says that Jim can't tolerate much medication because of his liver failure. The DR did not give us a scrip for insulin because he said Jim hasn't been needing it the last couple days in the hospital. But when I testing Jim's blood sugar last night before dinner, it was ~170. If this keeps up, I will call his GP tomorrow to get an insulin scrip. (The high blood sugar readings are coming from the prednisone he is on to reduce liver inflamation.)

The best of US Thanksgivings to all our US friends! The best of days to our foreign friends! Thank you all for celebrating with us.

Monday, November 20, 2006

Only 7 More Radiation Treatments

December 1 should be the last one. No unmanageable side effects yet.

That will put my final reconstructive surgery in mid to late January. My brother David who lives in the DC area said he would come up and help me with getting to and from the hospital and take care of Jim and me for about 4 days. That should be all we need.

Wait till I tell him he has to give the cat an insulin shot.

We expect Jim to be released Tuesday or Wednesday. He stumbled while climbing stairs this morning with the PT guy, so the PT guy is behind a Wednesday release so Jim can have another full stair training session tomorrow. However, the DR and the OT are ready to let him go. He will get a blood draw tomorrow morning for a final lab check.

Jim now says he is willing to talk to hospice. He was talking with the OT about it when I got there this morning, and he was getting teary eyed. He thinks of hospice as a death sentence. But many people (except the DR) said it wasn't a choice to die. The DR wasn't as positive, saying that if Jim took another turn for the worse, the hospice medical director would choose (given their mission) not to send Jim to the hospital for treatment. We also expressed concern that hospice would not give him PT. The Select staff said that wasn't true, but when I told Jim's case manager that is what DE Hospice told me, she said she would call around to the hospices about that.

Regardless, we likely aren't going to get any help into here until Monday at the earliest. I did not schedule Friday PT for myself because I want to stay with Jim as much as possible once he's here.

Sure, there's that food shopping thing to do. Sigh!

Saturday, November 18, 2006

We Played "Go Fish" . . ..

...and Jim almost beat me. His mental functions are definitely improving. He still bruises too easily, but his belly and leg swelling is almost completely resolved and he is having pretty healthy poops, despite the lactulose. His appetite is fabulous.

He's still on target for coming home next week. The case manager talked about Monday or Tuesday, but we would prefer Wednesday, so that he get 2 days of rehab there.

Yesterday, Jim's PT concentrated on walking, including with a cane. Monday, he plans to concentrate on steps, including a full flight in the hospital stairwell.

This morning I plan to rake leaves, and go in in the afternoon to exercise and walk Jim and stay with him through dinner.

Sunday, I will start my day with radiation, to make up for the 4-day break the treatment center takes over Thanksgiving.

I saw the GI guy for myself yesterday, and his advice was to cut back on alcohol. I will get follow-up blood tests (for the single whacky liver function) in 3 months and a follow CT scan (for the slightly enlarged liver and 4 mm lesion) in 6 months. He says the lesion is too small to do any other diagnostics on, but that because of my breast cancer history, he can't completely rule out that it might be metastatic disease. Therefore, he wants to watch for any change. However, statistically (absent the breast cancer), the lesion is nothing.

I need to start working on Jim-appropriate food for the house. Low salt, low sugar, low protein, whole grains, fresh fruits and veges. I am so excited about having to do a big grocery shopping trip on Thanksgiving week! I popped into the store yesterday just to pick up clementine oranges and milk, and it took me 1/2 hour to get through checkout.

Thursday, November 16, 2006

Cording and PT for V

OMG, it felt so good yesterday. I went to physical therapy for the first time since I dropped out during chemo. Both of my upper arms have become “corded.” It’s hard to explain, it’s a result of the surgeries, and it is not a shortening or tightening of a ligament, tendon, or muscle. It is a development in the skin from the armpit to the inside of my elbow where a “cord” develops and prevents me from getting full range of motion (comfortably) in my arms. (PT Bruiser says not all women with mastectomies develop cords and that some women have cords all the way from their armpit to their wrist. UGH! There is some discussion of cording here (although it's old).

My lovely PT Bruiser massaged the cords in both arms. For about 10 minutes each arm. I did not realize how much pain I had been walking around with. I actually felt more clear headed when I left the place. Thank you PT Bruiser. See you again on Monday.

Jim’s progressing wonderfully. This Select Hospital has a wonderful rehab program—highly individualized. His PT got him on stairs today and may be able to get him started with a cane soon, and the OT is working very hard with Jim’s mental function. There’s still a target of home by Thanksgiving.

That scares me. I just can’t be a 24/7 caregiver. I need significant help, and Jim refuses to get hospice involved. He’s OK with a home health agency like we used before (but not the same one because they were spotty), but that is so little help for us and they make us fit their schedule, not ours. I don’t know what to do when I have to leave the house for more than an hour. Sure there are friends who would be willing to “sit” with him, but what if he gets into trouble with standing up, walking, toileting, or (God forbid) another serious medical situation where the ambulance has to be called? I’ve been laying awake the last few nights worrying about this.

Keep your fingers crossed that his PT and OT people do miracles before Jim comes home. He has to be able to walk the steps in my house from his room up to the main floor (and back down again). If he can’t do that, I’m going to have to locate him on the main floor (so we can get out for DR appointments), and that would mean no access to a flush toilet.

I see the GI guy tomorrow for my funky liver results. I also will be talking with him about Jim’s situation. Including his transplant possibilities.

Jim lives in a condo building, and his unit has 2 floors. For years, he has wanted to get into one of the few single floor flats. One has just come on the market, and Jim had me to go look at it for him today. I’m not sure why I did this. There is no way he is going to live independently without a liver transplant, and if he is able to get a transplant, it’s like a year or more away. BTW, the unit was way overpriced for something that has had no upgrades since it was built 20 years ago.

At this point, it makes more sense to me to sell both homes and buy a ranch, or put some money into my downstairs to completely retrofit the room to Jim’s needs. But it’s still a problem with the six stairs to get out the front door. I could also have a new outside door installed on that lower level, and a sidewalk poured from that through the front yard to get to the driveway.

Yep, I’m worrying too much. Can you tell?

Only 10 more radiation treatments.

Monday, November 13, 2006

Senseless Ultrasound?

The hospital doctor ordered an ultrasound of Jim's legs today. Neither of us knew this was scheduled. He was checking to make sure Jim didn't have clots in his legs.

That makes no sense given Jim has been up on his feet doing heavy rehab for over a week. Perhaps if the DR thought this was important, he should have done it before he ordered Jim off bedrest and onto therapy?

What do I know.

Radiation fatigue is really starting to slam me. I took a 2 hour nap today, and it didn't seem to help. I might not be able to give Jim all the attention he needs when he comes home. We'll work it out somehow. Only 13 more radiation treatments.

Jim's military insurance did talk with me today, and we got good news about his coverage. We will have little out of pocket costs. The only things that we currently think he might need that Medicare and Tricare for Life don't cover are custodial care in a nursing home and nutritional consultations. We can handle the cost of the nutritionist ourselves, and if he needs custodial care, I will likely just keep him home and get home health or hospice help (which they do cover, if he qualifies, which he likely will).

Jim got weighed yesterday. He's down to 183 lbs, from the 225 he was when this all started, and the 195 he was when he last went into the ER.

Sunday, November 12, 2006

I Might Need to Rename This Blog

So little about breast cancer. So much about liver disease.

Found out that liver disease is the 7th most common cause of death for American adults.

I've been trying to research on the Internet about nutrition and liver disease. Getting conflicting info. The liver is the most important organ for metabolizing nutrients. Too much of one thing or too little of another thing can really throw things out of whack. Medicare only pays for consultations with nutritionists for diabetes and renal disease.

Jim has been on a milk thistle supplement for about 4 days now. Even though much I've read says that is a good thing for the liver, I read something today that said not to do it. SIGH.

We are hoping Jim can come home before Thanksgiving.

Jim wants me to consult with his military insurance about what kind of backup they have to Medicare-covered services for him. Hopefully I can do that tomorrow; I mailed in the "authorization to talk to me form" last week. Damned HIPPA. If they won't talk to me, I will have to call them from the hospital and have Jim verbally authorize it. I will take along the speaker phone so her can hear.

Jim got a double dose of lactulose the last two days, and his mind has been clearing up because of it. Of course, though, with the lactulose comes unexpected, explosive bowel movements. I am sorry that the BMs happen, but I find having his mind clear to be more important. He had some mixed dream/waking state last night, but I went in early today and was able to talk him out of it without much problem. He felt he wasn't getting appropriate nursing assistance during the night. (He said they didn't clean out his bedside commode and he had to smell the smell all night.) That may or may not have been the case. It is the weekend, and weekend care does seem to be problematic in most facilities. He spoke to the charge nurse about it in my presence (I was silent), and although she seemed annoyed by his complaints, she did not disagree that it could have happened.

Radiation 15 tomorrow. I also meet with the radiation oncologist. I am starting to feel the buildup of scar tissue in my chest skin. It's not painful; it's a feeling like trying to pick up a Scrabble tile with mittens on. Like the skin is losing flexibility, which is what I was told it would do. Makes me wonder whether I need to go through all 28 treatments. If you recall, I was scheduled for 8 chemo treatments but only got 7 because the oncologist thought the additional treatment might do more harm than good. On that point, I still have significant numbness in my feet, fingertips, and tongue from chemo-induced neuropathy. I bought some boots today that are a little ill-fitting, and I was stumbling all over the place between them and the numbness.

Saturday, November 11, 2006


Why can't I get Jim's DRs to talk to me about his condition?

I happened to be in the room today when the internist came in. In the course of the conversation, he dropped the news that Jim's platelets are dropping again--down to the 80s from the 140s in the last few days. The result, he said, of the liver failure.

After the DR left, I asked Jim whether he knew about that. He said yes, the DR told him the day before, but the DR also said it wasn't significant so Jim didn't feel the need to tell me.

Sigh. Well, that's it. I'm going to have to have a note put in the chart that the DR calls me every day. Yep, I need to be bitchy, and I really didn't want to do that.

Jim had another bad night last night. The nurse called me at 8am suggesting I come in to calm him down. He was in tears when I got there, because he thought there was an obligation he had that he couldn't remember. He had been agitated for about 4 hours. I explained to him that there was nothing he had to do. The nurses and I were taking care of everything. I told him it was like one of those recurring dreams where you think you have missed a college final exam. He agreed that he was mixing dream state with waking state. I suggested he do things like ask for the door to be closed (so he doesn't hear the conversations at the nurses station, which is across from his room), ask for the room lights to be turned on, turn on the TV to a movie station, and ask that a nurse come in to talk with him.

I continue to be sad about Julie losing her cat Smokey yesterday. That is just so unfair. It should not have happened.

I'm OK. For the most part. I am getting stronger physically, although I am starting to feel the radiation fatigue. The other day I went to visit Jim, and while he was up in the chair and eating lunch, I crawled into his bed and took a 2 hour nap. I just couldn't keep my eyes open.

Jim and I did his arm and leg exercises today. (PT and OT people are off during the weekend.) It's so sad how much muscle mass he has lost. His legs are so thin and his skin is wrinkly from the muscle he has lost.

I spent 3 hours today taking my defensive driving update course. Gets me a discount on my car insurance. I wasn't due to take it until next month, but I didn't want to have to find someone to watch Jim for 3 hours next month. I do hope Jim is home next month.

Life is sucking right now.

Thursday, November 09, 2006

I Want Jim Home and Jim Wants to Come Home

Jim and I met with his case manager today. This woman was completely unempathetic to the feelings Jim and I are having.

Her point was that Jim was brought into Select to rehab to get him well enough to go home. We completely agreed with that. But we were hoping for more.

We expressed concerns that we are scared and frustrated because we don't understand the nature of his disease, what his current condition is, and what his prognosis is. She wouldn't even address those concerns.

We said we thought it was the DR's place to talk with us about those things, but that he doesn't spend more than a couple of minutes a day with Jim, and that I have never talked with him but once. She said that with the DR's patient load of 30, we couldn't expect anything more than that from him.

We told her that we wanted to understand the nature of "secondary complications" Jim is facing (like sepsis), so that we could treat him better at home so that he wouldn't end up back in ICU with a serious condition. She scoffed that we were unaware than any organ failure could lead to sepsis.

We asked her whether she could direct us to a support group about liver failure so that we could learn more. She said that wasn't her role.

We told her we wanted to understand whether we were facing more nursing home time or perhaps hospice or whether there was a better home health agency than we had used before. Again, not her role. Her role is to make sure he gets rehabbed and back home. Those were the "conditions" under which he was accepted into the hospital and all she is concerned with.

She didn't even say goodbye when she left the room. She seemed to see the conversation as confrontational. I guess it was, given she could offer nothing in the way of relief.

Jim and I just sat there stunned. I came home to search the Internet for resources for his care. But I ran into the problems with Julie and Smokey on the FDMB, and have done little other than watch that problem progress all afternoon.

Jim and I agreed that I should call and try to talk with his outside GI. That GI doesn't have privileges at this hospital, but maybe we can get some guidance.

After my observation yesterday about Jim's mental status and lack of bowel movements, the DR increased Jim's lactulose and his mind was more clear today.

Radiation 14 tomorrow. That will be 1/2 way through.

Wednesday, November 08, 2006

Overall, Not a Good Day

Radiation 12. That was good.

Lung CT scan and the thoracic surgeon said the "mysterious" spot is almost completely resolved. And he said that, given I am a former smoker and the daughter of a lung cancer victim, he might could find some way to get me annual CT scans of my lungs, either insurance-paid or in a clinical study. That was good.

Jim had lots of therapy today. That was good.

Betty left this morning. That was bad. I miss her so.

Jim called here last night at 4:30am. He was very confused and anxious. He had been that way for several hours. That was bad.

It poured buckets as I had to drive to radiation, the CT scan, and to see Jim. That was bad. Especially given I was driving Jim's car, which does not have a rear window wiper. Ugh!!

Ennis's blood glucose level this morning was 325. That was very bad. Where the F did that come from?

Jim was weaker mentally today. Almost childlike. I had wanted to meet with him and his case manager today to talk about concerns and future. But I knew Jim would not be able to contribute much to the conversation, and would not remember it. So we didn't have that conversation. Instead, I talked (in front of Jim) to the charge nurse about the decline in his mental status. It might be an ammonia thing. She said she would take a look at his chart, but she didn't get back to me before I left. That was bad.

Maybe it's all the bad things piling up on me, but I'm starting again to think about losing Jim, and starting to think that his passing might be OK. After all, what sort of quality of life is he having right now?

Shit. Maybe it's just the gray day getting to me.

Tuesday, November 07, 2006

Jim/Venita Update

Jim is doing really well at Select Specialty Hospital. They are getting serious now about rehabbing him because his medical condition is stable. He walked a total of 130 feet today. He had a paracentesis yesterday, and they removed 3 liters of fluid from his belly. He had his first shower in seven weeks today. Yesterday, he was able to tell his internist correctly, for the first time, what year it is. Today he had PT (I haven't gotten the details yet).

Betty goes home tomorrow, leaving us both in a much better place than we were when she got here. At the time she arrived, I was fearful that she might be coming to help me with Jim's "final arrangements."

Yesterday, Jim suggested (because of something an OT said) that he might be coming home Friday. I freaked, because he can't walk independently yet. How would I get him into the house. He also suggested it to his internist, who also freaked, and said NO in no uncertain language. Then the DR sent the case manager into Jim to explain that Friday is NOT a possibility. Thank my stars these folks are on my side. The DR even suggested an interim facility.

On that point, St. Francis Hospital (which is the host hospital for the Select Hospital) has a skilled nursing facility (SNF) in it. I took a wander up there yesterday, and there were no folks in wheelchairs in the halls waiting to die (which was Jim's complaint about Shipley). It is a 35 bed facility, and they seemed to have lots of empty beds. I don't know if they have Medicare beds, which is what we need for Jim. It's on the same floor as the rehab unit, so Jim would have quick access to PT and OT.

As for me, I had radiation 11 today. Friday, I will be half way done (14 of 28). I have a 3rd CT scan of my lungs tomorrow, to check that nasty suspicious spot on my lung. I hope to get a "clean bill," although I would like them to follow me with annual or semi-annual tests. Given I'm a former smoker, with a family history of lung cancer, and knowing that lung cancer is one that really has to be caught early, I would like to have periodic tests.

As for my GP appointment yesterday, the CT scan of my abdomen showed a lesion on my liver and an elevated level in one liver enzyme. The GP wants me to consult my medical oncologist about the findings. However, I noticed that in the report the radiologist compared the current belly scan with the chest scan I had in September. I called the radiology department to find out why he didn't compare the current belly scan to the belly scan I had in June, when I was in the hospital. The clerk there is working on looking into that. Once I get that cleared up, and hopefully get a more accurate report, I will talk with the oncologist.

The report does say, though, that the lesion is too small (4 mm) to characterize but statistically most likely represents a benign lesion such as a hemangioma (whatever that is) or cyst.

So, all is well here. Again, we so thank all of you for following our journey and giving us your support.

Betty Has Been a Godsend

Thank you so much, Betty, for being here to help with this insanity.

You have taken a huge load off my shoulders the last 10 days. You have helped with the house, with food, with visiting Jim, with making sure I got plenty of rest. I feel really strong for being 1/3 of the way through radiation and having a husband in a critical care hospital with end-stage liver disease.

Thank you, Betty, for taking the time and expense to come here to be with us. All we had to do was ask, and you were on your way the next day. Your caring and compassion brings me to tears. Jim and I don't know how to truly thank you or how to repay you. All we can say is that you have a huge deposit in the Good Deeds Bank.

But we should have known you would help like this, knowing how you have helped others in the past.

And from me personally, it has been a joy getting to know you better. You have had an incredibly full life, and I love you for sharing it with me.

Travel safe tomorrow when you return home. And kiss Don for sharing you with us. Enjoy each other!!

Sunday, November 05, 2006

Jim's Doing So Well

I know it's only temporary. I know he is end-stage. But it feels so good for the time being to have him feeling better and knowing he's feeling better.

The last couple of days he has sat in a chair for 2-3 hours. He has been eating almost all of every meal and getting a protein drink between meals. His leg edema is almost gone, and his right leg is "oozing" very little. We did exercises for an hour today.

Jim has very little confusion, although his mind is "slow." For example, I told him I had had 9 of my 28 radiation treatments, and asked how many more I had to go. He thought hard about it and said he would have to subtract 9 from 28, but then he couldn't do that simple math. He is getting his sense of humor back, thank God. This afternoon he called here and said "get your butt down here and kiss your husband."

Tomorrow Jim gets his 3rd paracentesis, where they use a syringe to draw the excess fluid out of his peritoneum. With his last paracentesis, the DR drew out 2.6 liters. The GIs today said there is likely that much in there now. He is NPO (nothing by mouth) from midnight on. He will not get physical therapy tomorrow because the GIs are concerned about his platelet level. It's nearly normal, but he could still be at risk of bleeding.

Jim is starting to be aware that he cannot remember the last 2 months. We had to go over quite a few things today. He could not remember my left breast mastectomy, and he wanted to see what it looked like. He could not remember having seen it.

I had to explain my radiation therapy to him. He thought I had been getting dental X-rays everyday.

Jim believes, and I agree, that the move to Select Specialty Hospital has a big part to do with his healing. It is so quiet, and there is a higher staff/patient ratio than there was at Wilmington. Although he was very difficult and confused the first day there, he has been only getting stronger every day.

Jim is very thankful that Betty is here to help. Betty has been a joy. Last night, she and I went to her sister's house for dinner. I had not met Estelle and Marty before they dropped Betty off last Monday. Beautiful people; beautiful home; beautiful meal. They had a birthday cake for Betty. She turns 64 tomorrow. Estelle had gotten a birthday card for me to give to Betty. Sadly, I was so very tired that we had to leave after only 2.5 hours.

I went to see Jim early today and left Betty sleeping in. When I got home at 2pm, she was raking my front yard. I joined in and we got the whole front done. She is out tonight at dinner with friends. She is going to "take" Jim the next two lunchtimes so that I can do some daytime sleeping. She also is going to try to get my car serviced; it started leaking antifreeze a couple days ago. Neighbor Kurt came over to look at it and said we were OK driving it in the short-term.

We are so very blessed to have our neighbors, friends, and family helping us with all of this. I spoke with my brother and sister-in-law from TX today, and they remain ready to come up if I need them. I want them here every day, but I am "saving" them for the next time that Jim "crashes" and has to go into the hospital. I have a strong feeling that will be his last time, and when I will need them the most.

Thank you all so very much for going through this with us.

Tomorrow is radiation 10. I am not aware of any side effects except the scaring. The radiation supposedly scars and thickens the skin, and I feel that the skin on the right side is getting "tougher" than the skin on the left side is. Another supposed side effect is fatigue. Yes I am very very tired all the time. But who knows where that is coming from, with the Jim situation. I still have "dead feet" from the chemo.

I have a follow-up appointment with my family DR tomorrow afternoon because of the colitis (which she suspects is a stress reaction to Jim's situation). The DR sent me for blood, stool cultures, and a belly CT scan. I got a call last week from her nurse, who said I could call back for lab results, or wait until I came in for the appointment. That troubled me because they never call with "normal" results. Something must be out of whack. I'll find out tomorrow.

I had an initial appointment with a dermatologist last week. I was becoming concerned with skin cancer because of my age (and Jim had it last year) and my breast cancer. She said I was skin cancer- and pre-cancer-free. She did say that there is a high correlation between breast cancer and skin cancer, and that the type of skin cancer involved is melanoma (the deadliest), not basal cell or squamous cell. She said there are different theories for that correlation, but that she subscribes to the theory that chemo "sets off" the cells that lead to melanoma. I'm now on annual follow-up for skin cancer.

Thursday, November 02, 2006

Jim Changes Hospitals

Jim is now in the Select Specialty Hospital in St. Francis Hospital. Select is a group of small acute care hospitals that specialize in certain difficult cases. They also rehab during the acute stage. Our hope is that having Jim rehabbed while he is in an acute setting will allow us to avoid the intermediate step of a skilled nursing facility for rehab before he comes home. (Shades of Shipley.)

Jim’s platelet count is slowly improving. Yesterday’s count was something like 98.

Wilmington pulled Jim’s central IV line before releasing him. The nurses at Select weren’t happy about that because it is very hard to place an IV line in Jim’s arms. He has small veins and all the bruising makes veins difficult to see.

Jim’s is highly confused right now. I came to find out he had turned down his lactulose on Monday and Tuesday. I almost went postal again, including on Jim. Jim agreed never to refuse the lactulose again.

I spoke on the phone again to Dr. King, the neuropsychologist. He continues to believe that Jim’s mental status will improve as his physical status does. Jim is now highly deconditioned because of 2+ weeks on his back, and it will take a long time to get him back even to the point he was before the sepsis.

Jim was very angry when I went to see him yesterday evening. He said he had been assaulted by 4 nurses. I asked his room nurse to explain the situation. She said Jim would not accept some medicine being injected into his IV port, so she got some other staff to restrain him while she accomplished the injection. So Jim was right; he was assaulted.

Betty is really great. She scoped out our food situation yesterday, cleaned out the fridge, and went grocery shopping. She made a wonderful fruit salad, a green salad, and a spaghetti pie for dinner. Bless her heart. All I had to do was eat and fall into bed.

Betty is taking Jim watch today, going to the hospital while I take a sleeping pill and stay in bed all day.

I had radiation 7 yesterday. 25% of the way finished. Radiation 8 today.

Tuesday, October 31, 2006

My Day Off

Radiation 6 this morning.

Betty got in safely last night after her 2-day drive from FL. She is going to the hospital for me today, so I have the day off. I plan to sleep some, maybe clean up some of the periennial gardens, maybe some paperwork.

We'll go out to eat tonight so that I don't have to worry about going to the grocery, and maybe tomorrow do the clean out the fridge/grocery shopping thing.

I took Jim a cheesesteak sandwich for dinner last night. He was disoriented. He's always more oriented in the morning. The nurses had put him in one of those on-wheels recliner chairs they have in hospitals and brought him out to the nurses station to sit with them. That way they would be right there if he needed something. That was sweet.

I put a call into Dr. King, the neuropsychologist, to see whether he had any pull to get Jim onto the hospital's rehab floor. He called back when I was gone. It sounded like he was willing to help if he could.

Monday, October 30, 2006

It's Looking a Little Easier

Jim had a repeat ultrasound of his legs today (Monday) for blood clots and he has been cleared for PT and OT. Hopefully, that will start this afternoon. If not, tomorrow.

Finally got to see DR Egotistical Invisible Cosamanis. He understood that Jim and I want to pursue rehab rather than hospice. He said he would ask the social worked to ask the rehab unit at St. Francis Hospital to come in and evaluate him, but the DR doubts that Jim is sick enough for them. They tend to work with people on vents and other life support.

But the Dr. thought the rehab floor in Wilmington Hospital might be possible. Jim got turned down by that rehab unit before because he didn't fit their "mold": spinal cord injury or joint replacement. But the DR thinks they might accept him this time because they have a low patient census (and Jim has good insurance). Actually, this could be better than St. Francis because Jim could keep his GI guys (they don't practice at St. Francis) and Jim's neuropsychologist is in the Wilmington rehab unit.

I also spoke to the social worker about wanting these things to happen.

Jim read the sports pages again today. The DR gave him a severe talking to about how nutrition is a very important part of his wellness. (Jim stopped eating a week before he went septic.) Jim continues to have some confusion from the Ativan pills he got yesterday, and the DR told him he couldn't have anymore. Said if he got anxious, to just put up with it.


The DR is still being Dr. Egotistical Invisible. He saw Jim before visiting hours (when I could not be there) and told Jim he was in end stage liver failure and would not survive. Isn't that a nice thing to do without family present? Dr probably did that because when he used the term "end stage" with me on the phone the night before, I told him they had never used that term before. So I guess he had to one-up me.

But luckily, I had shared with Jim on Saturday night that the DR had said that so Jim was prepared. And Jim wants to fight the "death sentence." Good for him!! He was asking me about getting to rehab and onto a transplant list.

Jim was in remarkably good spirits. His cousin stopped into visit and they spent 3 hours watching the Eagles football game together.

Before I went in the morning, I called the nurse's station and told them I would be there from 10-1 and asked them to page the DR and tell him I would like to meet with him. No Dr. Did the same thing on the afternoon visit. No. Dr. I'll try again today.

Jim was hallucinating some during the night. He called me 3 times between 11:30 and 1:30 about people in the hospital blackmailing him.

Radiation 5 this Monday morning.

Sunday, October 29, 2006

Saturday: Venita Goes Postal!

I wrote this early Sunday morning, but it got lost in cyberspace. Steve was kind enough to find it.

Saturday started out really good. I called the ICU nurse and she said Jim was especially alert. I did the happy dance, and went about my morning. The nurse called back around 10 and said Jim was refusing to eat his breakfast until I was there. I ran through the shower and got there about 15 minutes earlier than I would have.

Jim was indeed very alert, but still having some episodes of confusion. He wanted to talk to me in private, so I closed the door, and he explained (with tears in his eyes) that he wanted the peripheral IV removed from his hand. I said sure; it had been put in 4 days before, the hospital's policy is no peripheral IV more than 3 days, so why not. I asked the nurse to remove it; she said removal wasn't really needed but if Jim wanted it out, she would take care of that. Jim said he wanted it out. Unfortunately, the morning nurse did not take it out, and it became an issue in the afternoon session; an example of how the staff is not responsive to requests.

Jim and I sat and had his breakfast. Jim had watched game 5 of the World Series the night before and he read the sports pages from all 3 papers I brought (first time in more than a week). He watched the Penn State Purdue game while I read. A pleasant, happy morning. As Deb says, when Jim is good, I am good.

I returned at 5. A nurse I never met before stopped me on my way in and told me Jim was being transferred down to the regular floor. I asked why. She said because the DR ordered it. I asked why the DR ordered it. She said because he did.

Well those kinds of sophomoric answers drive me through the roof.

Me: We want to see a DR before Jim goes anywhere.
Her: It is the weekend and there are no DRs on the floor.
Me: I'm sorry, this is ICU; I don't care what day or time of day it is, I want to see a DR.
Her: We can set it up for you to talk to a DR by phone.
Me: I want to SEE a DR.

The egotistical bastards. The DR involved is the internist. Dr. Kahn, a member of that group, told me just Friday that he was ready to send Jim to hospice, and now Dr. Egotistical Invisible Cozamanis decides Jim is not "critical" enough to keep in ICU even though as far as I know his platelets have only risen from 4 to 10 (140 is low normal). So he's no longer critical, but he's terminal. Please someone with the very important MD initials behind their name, explain to me, to my face, exactly what your action plan is, because I am having a difficult time figuring it out. I'm just a lowly accountant.

After more than an hour, they got the DR on the phone. My biggest issue, and the reason why security was called (I'll get to that) was that I had pulled the electrical power on Jim's IV. Notice, I did not pull the admin line from his central line, I did not cut the admin line. I simply unplugged the metering machine. I thought carefully about it and did it in the manner that caused the least harm.

Why did I do that (of course with Jim's concurrence)? Jim is the Michelin Man. The edema in his arms and legs is so severe that his ankles are "weeping" fluid. His belly ascites is so pronounced that he is having trouble breathing. Why are we still putting fluids into him? If it is for the purpose of administering multi and B vitamins (which this bag was doing), Jim can now swallow a pill! The DR said the vitamins could be by mouth, but started into some medical mumbo jumbo about keeping his fluid levels up to keep his blood pressure up, and every 3rd sentence or so kept saying "Do you finally understand." No I didn't, because he kept talking doctoreze, and I almost hung up on him but the nursing supervisor took the phone and finished the conversation with the DR.

While I was on the phone with the DR, the nurse and the nursing supervisor were in Jim's room whispering who knows what to him. Two security officers (faux cops, you know how they are) were less than 5 feet from me, glaring me down in case I were to do some major harm to the telephone.

After I left the phone, I went back to Jim and the nurse wanted to stay in the room with me. I asked for privacy with my husband. She stepped out and I closed the glass door. She said I should not close the curtain. She and the nursing supervisor told me their purpose was to protect Jim from me. I told them it was my purpose to protect Jim from them.

I could go into a lot more of the details, but suffice it to say that all involved were upset, except the two faux cops who live for the chance to cuff and drag out a feisty 5'4" 130 lb cancer patient.

This was about 6:30 pm. They said I could stay for Jim's transfer, which was imminent. I left at 8--too tired and upset. Jim got transferred at 10:30. Bastards. I don't think I ever want to deal with this hospital again.

So that's the postal story. I actually held my wrists out to the youngish too-pudgy-to-ever-have-gotten-a-real-cop-job faux cop with the rocking pelvis look, and I swear he really wanted to slap the cuffs on, but he didn't have any!!

Jim was a real gem through this. He kept trying to comfort me for how upset I was. And he didn't get his dinner. The oh-so-chipper dietary aide brought the tray in right in the middle of the cuffing scene.

So, Jim's now back down on the medical floor. I plan to continue my crusade to get a DR to talk face to face with me. I talked yesterday with Jim about getting to the Select Care Rehab unit over at St. Francis. Jim is all for it. We need to figure out what kind of medical (GI) support he could get over there because his GI guy does not practice there and Jim will need a paracentisis. We also have the issue with the clots in his legs.

The biggest ray of sunshine yesterday (besides Jim's smiles for me) is that Betty is coming up from FL to help me. I've talked about Betty before. She'll be here Monday night. My brother and sister in law, Les and Donna, also are standing by ready to come. Thank you thank you for helping. I can do this alone physically, but I can't do this alone emotionally, and these people understand where I am in needing Jim. They know that Jim is my love and my life.

That's all for now. Thanks to the time change, I have a little more time for myself today. Because of the move out of ICU, visiting hours on the main floor start an hour earlier, so it all washed out.

Friday, October 27, 2006

Friday Evening

Sorry to be so prolific, it seems. It's just an outlet for me, and I do get calls from many who want to know what's up.

I went back in to see Jim at 4:30. I had been waiting at home to hear from his GI DR, but he hadn't called. I had wanted to get a "2nd opinion" on what the internist said this morning.

When I came into ICU, I saw the GI guy there, and then the nurse rushed me out. Turned out she wanted to put me into a private room with Dr. Lobis.

Dr. Lobis is a sweet man. He was the one who squeezed my shoulder the other day. He's not in the same position as Jim's internist that we should prepare to give up on Jim. Even though Dr. Lobis won't be around this weekend or next week, he thinks there is still room for Jim to improve. He says that Jim's liver values are in the normal ranges; it's just other things out of whack.

The DR said that a liver transplant was still a possibility for Jim. I told him hospice would release Jim if he made the transplant list because hospice is pallitative, not curative. He said we could play hospice's game as long as we needed to (to get the covered health care).

Dr. Lobis also agree to be Jim's private GI specialist. We had seen another in the practice, but she hasn't been in to see Jim all week, so I feel Lobis has more of a connection.

Jim was very alert this evening. I asked him to tell me how he got to where he is, and he did a good job at it. He was very loving to me, and didn't beg to be brought home. He seemed to understand that there is a process.

I told Jim his estranged brother had called me this afternoon, trying to find Jim to wish him a happy birthday, and Jim said "the buzzards are circling." Jim thinks his brother's only interest is in his estate. I laughed that Jim would be that fast on the uptake about his brother.

Jim had solid food for dinner tonight and did pretty well. When I left, I told him I hoped to see him as improved tomorrow from today as he was improved today from yesterday.

He was there, truly there, with me this evening.

Thank you all, so much, for your prayers/thoughts/wishes/comments/hopes for us.


Friday Morning

4th radiation this morning.

Jim was eating by himself when I went in this morning, and he seemed more oriented. And they were not transfusing him. A nurse I've never worked with before told me she could not give me any info about his condition; I would have to talk w/ Dr. Kahn. Fine. Page him.

(She also would not let me wait outside Jim's room when he was being tended to because I was violating other patients' HIPPA rights. I told her that because of my chemo-induced neuropathy, I could not go stand in the hall. She backed off.)

AND, Jim now has severe edema (swelling) in his arms and hands. This was just starting yesterday. Still some bleeding from his nose, but not fresh.

Dr. Kahn said he's leaning towards the hospice side of the equation. I asked why, given he had asked for until Monday. He said Jim is not improving with the change to supportive medication only. (I'm thinking, you said Friday or Saturday would be the time to tell, and it's only Friday and look he's eating!) He said Jim is even more confused; I disagreed and Dr. Kahn said any apparent improvement is transitory. Nothing in his belly on the MRI except fluid (that is, no masses). Don't yet have the results back from the blood test for the autoimmune disorder. Apparently, it can be common with large transfusions of platelets to have the body reject them.

I asked for a meeting on Monday with Dr. Kahn, the GI DR, Jim's cousin Lloyd, and me to talk about an action plan. Dr. Kahn won't be in the Wilmington Hospital so Dr. Cosamanis will be the internist, and he's not sure how that DR will feel about having the GI guy in on it. I said I wanted the GI guy because the root cause is GI. Dr. Kahn said having Lloyd there was good.

Jim asked how the phone call went. I told him everything except Dr. Kahn's comment about hospice. I have not yet told Jim about hospice. I told Jim that if he was feeling well enough on Monday, he should be part of the conversation, and he agreed.

I'll have to think about how to tell Jim about hospice. If anyone has ideas, please let me know. And soon, because I would want to do it maybe Saturday afternoon (unless I see and hear about a remarkable change).