Yesterday's Happenings

I am not having pain from the surgery. Discomfort, maybe. But I am taking Percocet to numb the anger and disappointment I am feeling. I was given a plan of care, I followed it to the letter (except for the physical theraphy) even though there were so many things going on, and I end up with one boob and am completely in the dark about where I go next.

I called the breast surgeon (Dr. Cutter). She hasn't called back. I called the radiation oncologist (Dr. Nuke), and he more wanted to talk a defense against blame rather than what I wanted, a plan and prognosis for reconstruction on the radiated side. I see Dr. Boob (or maybe now Dr. Half-Boob) on Monday and Jim wants to come along. He wants answers too.

I don't know why Dr. Cutter set me up with Dr. Boob. He's a kind enough man, has gone to great lengths to treat me, but sometimes seems like a C+ med school student, if you know what I mean.

I now have to do alot of research on tissue reconstruction and the nearby DRs that do it well. I also have to think about just going flat chested.

Today was a chore day for Brother Dave and me. My kitchen faucet wasn't putting out cold water, and it was slowly shutting itself off. We figured a new faucet was in order, because this was a contractor's model for which we would not be able to get replacement parts. I chose this behemoth faucet where the sprayer pulls out of the end. Dave put it in in about 1.5 hours. It stands really tall so that you can get buckets and tall pans under it. I'll get used to it. After he got it in, I still didn't have cold water, so off to the crawl space to look for ice blockage. A little rearrangement of insulation and leaving the crawlspace door open for awhile, and we got cold water back in the kitchen.

We also ordered a new door and screen for the fire place. We first went to a fireplace shop and I fell in love with one $1400 model (8 weeks to deliver). Prairie styling and bi fold doors with a cabinet (not draw) screen and I could choose the finish (something like 30 choices). I thought bi folds would be good because they would not get in the way of the fire tools that sit on the hearth.

We then went over to Lowes and found what seems to be a perfectly acceptable door in prairie styling. Not bi fold doors, but the cabinet screens, $340, and only in black. 2 weeks for delivery. Dave said he would return to install it, but I think I might can find someone here.

We went to Dick's Sporting Goods. Dave got himself some clothes, and bought a really nice insulated flannel shirt with snaps, not buttons, for Jim. Jim really likes it. I bought Jim some fancy skiing long johns and a exercise stair step platform. He doesn't want either of my gifts.

Off to Target. My brother Les and sister in law Donna had given me a digital camera for my birthday, but I needed accessories. I got a memory chip and rechargeable batteries using a gift card I got from Annie for Christmas. Thank you Annie. I forgot to get a camera case. Oh, well, I can do that later.

A little shopping at Trader Joe's, a little shopping at the pharmacy, and 3.5 hours later we got home. It was a nice outing for me, and I didn't worry about Jim a bit. He said he got lunch--ice cream and peanuts!!

We all had something different for dinner. It was a real 3 Stooges scene. Jim fried himself a hamburger, Dave broiled a trout filet, and I broiled a New Zealand filet mingnon. (Best filet I even had; got it at Trader Joe's; I highly recommend it.)

Today is Jim's "chore day" with Dave. He has to have a blood draw; get an ID card made so that he has access to SCAT (Senior Citizen Affordable Transportation), a half-priced taxi service; go to Jim's condo to pick up some things. For me, I want them to get pipe insulation to minimize the possibility of another ice block and take a few packages to the post office. I plan to nap in while they do their chores.

Dave has been really great, although he has serious pain with some oral surgery he had shortly before he came here. He just got up (6 am) because of the pain. He will be leaving tomorrow (Friday), after morning rush hour. Thank you Dave; you have been a real help here!!

Reconstructive Surgery

I had my reconstructive surgery yesterday.

My plastic surgeon called last evening.

The left breast went fine. It now has a "permanent" implant and a nipple.

The right breast has serious problems. This is where I was having pain. He started on the right, took out the expander, and found that the capsule (the tissue development around the expander) was holding fluid, which appeared to be somehat infected. He could see his finger through the skin, which means that I had been very close to having the expander "blow through" the skin. He put the silicone implant into the right, closed me up and then went onto the left breast.

After he closed me up on the left, he thought again about the right and went back in to remove the implant. He felt I would infect or "blow through" the skin. As a result of radiation, the skin there is paper thin. I asked whether I should have had less rads, and he said no; he said riding the body of the cancer was much more important than cosmectis.

He said I would need 6 to 12 months to completely heal from the radiation (if I would heal completely at all). After that, I could reconsider reconstruction on the right, but it would not be a silicone implant. I would have to have muscle and skin relocated from my belly, my back, or my butt (the butt thing would be at Johns Hopkins or in New Oeleans).

I am so disappointed, but not surprised, with the news on the right. If I had known he couldn't do both with silicone, I might have decided against reconstruction at all and just gone without these damned explander implants all this time. I truly would not have mided being a flat chested, bald, middle-aged woman. I am so disappionted that this is not over. And until I see both sides with the dressings off, I won't be even able to start deciding what I want to do, except cry with the disappointment. ( I am a small boned, 120 lb, 5'5" woman that has little muscle/skin to spare from other parts of my body.)

So Many Changes

There have been a number of changes this week, and I'm sorry I haven't updated.

Jim and I checked out two nearby senior centers, and chose the one closest to us, which will provide him bus pick-up and drop-off two days a week for $1 each day. The annual membership fee is $20, but because it's mid-year (they are on a June 30 fiscal year), they will only charge him $10. They are letting him do a couple days free to see how he likes it.

He went for a half day today (because of his light bulb treatment). He found himself a recliner in the "library" and read his book until lunch time (he took his own lunch), then went back to the library, took a chair nap, and then read some more. He also walked the hallway for exercise--WITHOUT his cane!! I've given him grief for that.

He said he thought going to the Center is do-able. However, he says he won't go back until maybe next week Friday because:

• Monday he has light bulb treatment and his GP.
• Tuesday I will be having surgery (I'll get to this next).
• Wednesday and Thursday he wants to stay home and worry about me.

OK, the surgery thing. This is to replace my expander implants with the kinder, gentler silicone implants and give me nipples.

Surgery was supposed to be Friday, February 9. I saw the plastic surgeon yesterday (Thursday) and complained greatly about the pain on my right side, a combination of the radiation burn/scarring and the damned square and pokey expander implant. (With tears running down my face I'm telling him about my pain.) I thought he would want to delay surgery until I felt better.

NO. He wanted to advance it. Said let's get the expanders out, you will feel better immediately. He tried to find a slot for me in today's surgery schedule, but the best he could do was next Tuesday.

All sorts of scrambling to reschedule things. Thankfully, my brother Dave who was coming up on Thursday to care for Jim and me over the weekend already had the rest of the week off, so he can come and go sooner. He'll drive up Monday after he finishes some dental surgery he is having done. (Eek! I hope he lets the anesthesia wear off.)

Liza was going to take me to and bring me home from the hospital (this is out-patient). She was going to stay in the waiting room the whole time in case there was a problem. She took a half day off work to do this (she drives a school bus). Well, she can't just up and change her schedule like this, so I will get to the hospital either by cab, my own car (and leave it there), or Dave and Jim will take me. Then my neighbor Nancy will pick me up when I'm released. Liza will come over after work to make sure everything is going OK here. (Bless her heart.)

So this weekend will be a whirlwind of preparing for company, stocking in food, and cooking in advance. Who needs the Superbowl with this kind of excitement!!

I'm trying to plan a visit to Longwood Gardens in April or May for nearby people on the FDMB. We should have a grand time. Any non-FDMB people--Annie, Pam--please let me know if you want to be part of this outing. Annie, we've talked forever about going to the Gardens together. (OK, maybe now I'm thinking maybe we have gone together. CHEMO BRAIN.) There may be an FDMB member coming over from Harrisburg, so you two could ride share. Overnight accommodations will be available, with Jim's condo sitting empty.

Sad news today about the mid-FL tornado(s). Turns out they ran through the area where Betty, the one who came to help me when Jim was in ICU, lives. I was able to get in touch with her husband Don by email, and he called, and they weren't even aware of it during the night. However, a large amount of damage has been done close to them. Thank goodness for the Christian/Jewish/Good Samaratin Gods that watch over those two. They have such a special place in our hearts!! Betty is my Angel and Don is Jim's best friend from childhood.

I may not update again until a day or 2 after surgery. I will make arrangement for Julie to post my post-surgical status on the FDMB, and for Steve to repost here, or link to it. (OK Julie? OK Steve?)

Good News--Normal PAP

My January PAP smear came back normal. It hasn't been normal for 3 years. I have a strain of the HPV virus that can lead to cervical cancer, and we've been monitoring this situation every 4 months for the 3 years. We still need to monitor every 4 months until I get 3 normal PAPs, then I go back to annuals.

Do you suppose the chemo might have done it? I finished chemo in maybe late July, had an abnormal PAP in September, but now this normal.

One less DR to poke and prod me every 3 or 4 months would be great!!

No Adult Day Program, For Now

Jim and I got down to the Day Program an hour before the director came in to "sign us up." We sat at a table with some participants to eat our breakfast, and it became abundantly clear to me that these were people with a very high state of dementia. If part of my objective is to get Jim socialized, this was not the place.

Part of this is because Jim has improved so remarkably in the last few weeks that he has "outgrown" the place. Even the director admitted that he was far more coherent today than he was last week when he visited for a few hours. We left Jim's application and his Dr's form with her, in case Jim should decline and we need to come back. She said she was happy he did not need the close supervision that place provides. (She also told us a story of how her mother, an alcoholic, went into liver failure and lived another 34 years, I think till she was in her 90s.)

So tomorrow we WILL look at the local Senior Center. Activities are provided there, but as we understand, no supervision. For now, he's in the dungeon and has promised not to bother me today. He already has his lunch; I made it this morning.

Adult Day Program Starts Today

Jim and I will be going for our blood tests this morning, and then off to Gilpin Hall for the Adult Day program. Jim will be riding the Paratransit home. He is concerned about that after a newspaper article this morning about how the system "abandoned" a disabled person for stood outside his DRs office for 6 hours waiting for the bus, until a stranger picked him up and took him home. I told him all he had to do was call me and I would come pick him up.

Liza drove him to his "light bulb" treatment today, and they talked about a Senior Center instead of an Adult Day Program. Jim came home asking about the difference and why I had chosen an Adult Day Program. I explained to him that I've been planning for this for a month now (while he balked and fought and had a cranky day at Eden Rock), and at the time the planning started he had demetia, could not ambulate well, and was occasionally incontinent. The Senior Centers won't take someone who is not independent because they don't have aides and nurses (as do the Adult Day Programs) and they don't monitor clients who "wander."

I told him we would go check out a nearby Senior Center after I take him to his light bulb treatment on Wednesday. He may be well enough at this point to use that instead of Gilpin Hall. And, of course, there would be a huge cost differential. Except for "special day trips" and "lunch" (which of course Jim would not get), the Senior Center are, I believe, virtually cost free.

Today, Jim did his laundry, made his own lunch, cleaned and cut up fruit we had bought on Sunday, made meat loafs for the freezer, and helped with dinner.

I was gone to physical therapy and having a pre-op EKG when the Hospice aide was here this morning, but Jim directed her activities and made himself a hot breakfast. On the days he will have to be out of here early for the Adult Day Program, she will make him a cold breakfast--cereal and the like. (How was it we got an aide who doesn't cook and who doesn't have any interest in learning to do so?) But her other job is as an EMT, so even though as a Hospice aide she cannot give medical care, it's nice to have her paying attention to his physical and mental condition.

I am really looking forward to my surgery next week. There is something wrong with this right expander implant, which has been in there almost a year now, and I want it OUT.

I got alot of my office cleaned up yesterday. I was shreading "to do" notes from 16 months ago. I still have a long row to hoe, but I made a huge dent in it. Within a couple of days, I should be all set up and ready to work-work.

My best to all, and my sympathies to Jess, who's brown tabby Earl today lost his brave battle with many serious physical conditions. Fly free Earl.

Remarkable? Miraculous?

I'm not sure which adjective to use to describe the complete change in Jim's physical and mental status over the past couple weeks.

Yesterday, he got himself up; made the bed (as badly as he did before he got sick, but then he would seldom make it); emptied and cleaned the bedside commode; had set out his clothes the night before; shaved, brushed teeth, and washed up without assistance; put all dirty clothes in the laundry basket; tidied the bathroom and the family room; came to the kitchen and made his own breakfast of fried potatoes, a fried egg, toast, mixed fresh fruit, and juice; set his dishes in the sink; went out to his drinking club with a friend who picked him up; helped make up the list for grocery shopping today, etc; etc; etc.

He and I are both astonished with his change. He is walking the stairs regularly, although he does tire and go slower at the end of the day.

He started back on a diuretic (Aldactone 50mg) Friday, and we are both concerned it might slow or reverse this change, so we are watching closely. He does still get cold, but his blood pressure is back into a normal range. He says that the diuretic is starting to relieve some of the discomfort of the ascites.

(Note to self. Call the Hospice nurse to let her know of the medication change.)

This from a man who almost died in ICU in October. This is certainly not the road we thought we would be on in January.

Jim is starting to get psyched about his new schedule for this week: specifically the Adult Day Program. He seems to be looking forward to the independence of riding the Paratransit; getting out of the house for several hours each week; of making his own lunches the days he will be home; of being able to let me work.

We have decided to get his blood test on Tuesday as the DR originaly requested. I will drive him to the lab and then to Gilpin Hall (the Day program), instead of riding the Paratransit with him and cabbing home.

I spent an hour with the Hospice social worker today while Jim was out. She does seem, humm, inexperienced with counseling. When she was here with Jim and me last week, Jim complained about all the time I spend on "the cat board," meaning the Feline Diabetes Message Board (FDMB). I printed out and she read the FDMB threads from when I posted I had breast cancer and when I posted that Jim was in ICU with sepsis. She seemed to understand that the FCMB is not just some frivolous "chat room," but my support network. And that the people on the Board are my friends, not just some "Internet junkies."

She and I discussed how jealous Jim is of my time. We didn't come to any conclusions about that, except that Jim gets far more of my time now than he did before he got sick. She finally seemed to understand my need to get back to as "normal" as possible. She agreed that the Day program would be good for Jim.

She wants to come again next Saturday, and I am hoping she will be able to have a one-on-one with Jim. Jim had his normal "what might I gain from that" attitude when I told him about that. She said she could spend next Saturday again with me, and then talk with Jim the following Saturday, when I likely will be "knocked out" in bed post surgey.

Her regular full tine job is substance abuse counseling. She doesn't seem to believe it is possible for Jim to have given up drinking cold turkey and not have a craving to drink.

As for me, I am flying high and probably doing alot of typoing on 2 Percocets tonight. The pain pills, various creams and aloe, and a cold wheat bag and ice packs are not touching the pain I'm having in my right "breast." The more the pain goes on, the less likely I am to think it is a late-onset radiation burn, and more likely s reaction to the expaander implant. Hopefully, it is not an infection, but we'll find out when I get my pre-surgical CBC next week.

Jim is going to the grocery with me today. I think he is looking for more food alternatives. Last week he found a bag of roasted, unsalted peanuts, and has been scarfing them down. He also complained, once he saw the monthly grocery bills, that he wants to cut backk on the Boost, a protein drink he takes. I talked to the Hospice nurse about that; she said she would check whether they had any "donations" of Boost she could bring him. I also talked with the company that makes it, and was told they would send us some coupons monthly.

Things are going remarkably, miraculously well here.

Well, back to bed. With the Percocet, I can hardly hold my eyes open.

Our best to all!!

Up Again in the Middle of the Night

I had to get up at 3 to test and shoot Ennis. We have gotten way off schedule and I'm trying to adjust back. He was a respectible 108 at +13.

Today was another busy day trying to get Jim arranged for next week's new schedule. He will get a Hospice Aide (Kira) every week day starting at 7am. She will help him clean up, make the bed, tidy the room, get him breakfast, set his meds in front of him, and clean the breakfast dishes.

Monday--Liza will take him to the dermatologist for his UV treatment. It already is working to reduce the itchiness of his excema. He will make his own lunch when he returns.

Tuesday--Adult Day Program from 9 to 3. The Paratransit bus is schduled to pick him up here at 8am. I will ride down with him the first time and bring a cab home. The bus will bring him home. He will take his food and fluids with him each time he goes, which I will set up the night before.

Wednesday--Another UV treatment, but Liza isn't available. I will drive him. He also will get a blood draw, which I will explain below. Again, he will make his own lunch.

Thursday--Adult Day program 9-3 by Paratransit.

Friday--Liza will drive him to the UV treatment and drop him at the Adult Day program. He will come home by bus at 4pm.

Jim thinks that on some Mondays and Wednesdays, Liza can drop him at his drinking club, and he can find someone to drive him home,

Jim had a blood draw yesterday, and the GI's office said that although his kidney values are improved, they still are bad. Their initial thought was to continue to withhold diuretics, until they found out that his ascites (fluid on the belly) is increasing. So he gets one-half dose of one of his diuretics. They wanted a repeat blood test on Tuesday, but I said we couldn't do that on his first day at the Adult Day Program. They agreed to a Wednesday blood draw, unless there is some way the Adult Day program can pull blood on Tuesday. God, I hope this diuretic doesn't set Jim back.

Today (Saturday) I am meeting again with the Hospice Social Worker in the afternoon. She wantd to see both of us, but I don't think a 3-way conversation is anything but hurtful at this time. Jim and I are struggling with "control" issues, and the social worker and the Chaplain last week seemed intent in picking at those sores. I think one-on-one is the type of help we need. While she is here, I have arranged for one of Jim's friends, Bill, to take him down to his drinking club. Jim will, of course, not have alcohol there; and he will have to limit his cranberry juice to 2 glasses. I have spoken to the bar manager about not serving him alcohol.

With this new schedule, I am planning to start back to work on Monday.

The morning aide is a hoot. She's a tall, tough, beautiful black woman who also is an EMT with a Pennsylvania firehouse. But she doesn't cook. I had to show her this morning how to make hot tea. This is true; I'm not exaggerating. She also was, with instruction, able to put together a bowl of cereal with a sliced banana and a bowl of mixed fruit. Lord help us when I ask her to make toast! Jim knows that on M/W/F that if he wants eggs and fried potatoes, he will have to cook them himself. There would be no time for that on T/Th because of the early bus pick-up.

We'll get this schedule down to a science, provided Jim does not balk at the Day Care facility. He plans to take a book and read for much of the day. And on Fridays, some of the guys there, including staff, have a 2 hour poker game.

Oh, and what about me? I've been sitting here with a hot flash for the last hour. My right "breast" really hurts; I just took a percocet. PT Bruiser thinks it is late onset radiation burn, but I'm no so sure. I think it's irritation from the expander implant. I will see the reconstructive surgeon next week to make sure that whatever it is won't be a problem for the final surgery. I want these expander implants out SO BADLY!!

My thoughts this week have been alot with some of the folks on the FDMB. Kris has decided not to get radiation for sweet Janie, and chemo is not an option with this cancer. Robin and Julie continue to grieve deeply over their losses of Peri and Smokey. Alice's 3 YO civie Sebastian has a urinary blockage.

It turned out that yesterday was the one-year anniversary of my announement on the FDMB of having breast cancer. I went back and read the resonses. What an absolutely wonderful group of very supportive people. Thank you Maxie, for taking me to that place. It is magic.

Losing my Mind

and worried about my health.

Dr. Susan Love says that every woman has cancer cells in her breasts. Usually the precancerous In Situ stuff. Usually aggressive breast cancer gets "turned on" by stress. I truly believe that's what happened to me in the summer of 2005 when Max became diabetic and I put my heart and soul into treating him.

Because of that I have wanted to try to stay stress reduced. My GP has me on all sorts of antidepressants and anxiety meds, and I try to get as much rest as I can. I don't do well with the eating thing, but that'always been me.

Jim is testing my stress level. We have been fighting for 3 days. We have had visits from the Hospice Chaplain and Social Worker, and he has said some of the nastiest things about how I abandon him to go talk with my "cat friends," don't do anything he needs, just want to shuttle him off like cattle to Day Care so that I can get drunk all day. I can hardly wait for all my boyfriends to come into the conversation.

I am trying to get him set up with Day Care 2x week (Tuesday/Thursday) from 9-3, with Paratransit taking him both ways. I will ride down with him his first day and bring a taxi back. On Monday, Wednesday, Friday, as available, Liza will take him for his UV treatments and return him home, except on Friday when he will go from 12-4 to the Day Care and come home by Paratransit.

He will have a Hospice aide from 7am to 8:30 am every weekday. Whether he uses her or not, she will be responsible for making sure he gets up, his bed is made, his living space cleaned up, he gets breakfast, and the breakfast dishes are cleaned up.

I will take him to any other DR appointments and to UV treatments on the days Liza can't make it.

This schedule starts next week (except the aide starts today). Today I have to take him out for a blood draw, and he will go with me to PT. Friday, UV treatment and my PT, and later in the day a visit from the Hospice nurse.

I spent much of Tuesday and some of Wednesday trying to pay his bills and arrange his papers. I'm not doing it the way he would do it, so he keeps jumbling them back up and I have to rearrange again.

SIGH!!

Increasingly Independent

Jim is absolutely amazing me. Ambulating well, little mental confusion, helping with chores, coming to the kitchen for meals.

Today he went to see his dermatologist for a semi-annual check up for skin cancer. He also has excema. He got a steroid shot from his GP 2.5 weeks ago, and it's just now starting to help. But when he scrathes, he develops bruises and even skin tears. The dermatologist understoof liver failure because her mom has had it from Hep C for 9 years. She said Jim couldn't have another cortisone shot this soon, and he shouldn't have a shot at all because his body can't properly process the drug.

Her idea was UVB treatments 3 times a week for 7 week. He stand nearly naked in this "tanning booth," and gets zapped by a bunch of UVB bulbs. The "dosage" will increase each visit. The has to keep his genitals covered (UVB exposure there, we were told, could cause penile cancer). So to get the maximum effect, he will be wearing tighty whities for the treatments.

He spent 3 hours today as a guest at the adult day program at Gilpin Hall. He didn't mind it once he found out he doesn't have to play the "stupid" reindeer games. At this point, he is the most highly mentally functional in the group. He found out he could get up and walk around for exercise, and that he can bring a book and sit in a recliner to read. (He also had to see his GP for a TB test shot, which will be read in two days. It's a requirement for the adult day programs.)

The problem, though, is that he wants to go only for about 3-4 hours at a time, 3 days a week. And h doesn't want to go until the afternoon. This doesn't work for me, bcause I do my best work-work in the mornings. And I need 5-6 hours uninterrupted. (And 5-6 hours costs the same as 3-4 hours.)

I told him I would give him his car keys, he could drive himself home, and try to figure it all out from there. He said to give him the car keys. Yeah, right.

The light bulb treatment is really throwing a wrench into scheduling.

Tomorrow, the pastor from Compassionate Care Hospice will visit us. The social worker also is trying to get an appointment for this week.

Jim is now refusing to have a Hospice aide come in at 7am to clean him up and fix him breakfast. He wants something around nine. BULLSHIT! By 9 he has already been antsy to be cleaned up and has already had breakfast. Again, he wants me to do it, not someone else.

I need to calm down and get a big white Board out to show him how scheduling is becoming complex and that he is throwing a wrench into it.

I also need to call Paratransit to get him scheduled for his first ride.

This Week's Update

I am now dragging Jim along to PT with me. PT Bruiser couldn't figure why I am all tightened up again, so she took at look at my chest. I have developed another late-onset radiation burn. CRAP! She recommended aloe, ibuprofen, and cold compresses. (Thanks, Steve, I have been using the cocoa butter.) It's been 50 days since my last radiation. PY Bruiser expressed surprise at such a late-onset burn. I am wondering whether I need to consult the plastic surgeon and whether he might want to delay my surgery. (NO!!!!)

We had Jim's blood drawn again today, and the GI guy will get the results tomorrow. Unfortunately, that DR is slow to respond and we may not find out the results until Monday. It has been a joy having Jim off diuretics. This morning he got right up when asked, headed straight in to shave and brush his teeth, made the bed, straightened the room, folded his laundry, and later helped me clean vegetables and cut up fruit and tend the fire.

I have been fallling asleep right after I finish cleaning up the dinner dishes, and Jim takes care of me, keeping me covered on the couch and taking me to bed when he's done for the night.

We've had a series of conversations about Adult Day Care. We are visiting another one tomorrow, and they invited Jim to stay (without me) for a couple of hours and have lunch with them. (I will have to take his lunch with us.) That sounds like a great approach to me. Jim has started to abandon the idea that I am trying to "warehouse" him and to embrace the idea that I need the uninterrupted time to take care of matters, including working. I've been having him come up to the kitchen for meals the last 3 or 4 times, and he is paying attention to how much effort it takes to prepare and clean up from a meal. (He had a broiled flounder filet tonight; thank you Robin so much for teaching me how to do that.) And he's been watching me do all sorts of other chores to keep him clean and comfortable, as well as my own chores, and I think he's finally getting the idea of how much effort this takes.

We haven't heard when Patrick will be back, and the way Jim is right now, we wouldn't really need Patrick every other night. But I hate to change Patrick to a different schedule and then not be able to get him back if and when the need arises. I wish Jim could be more accepting of the other caregivers.

I called the Delaware Breast Cancer Coalition this week to see whether they had any financial resources to help with Jim's night care. They don't, but the woman said she would call around to a couple other places to see whether they might be able to help. We burned through the $1,500 Cancer Center grant in only 10 nights.

I got to meet a member of the FDMB and her cat yesterday when she came over this way for a consult with a veterinary oncologist. What a joy it was to meet them, and see them interact, especially when the news so far from the onc was so surprisingly good. It looks like our spunky Princess Janiebird has many more happy and vocal days ahead of her!!

Why is Jim so Much Better??

It has to be the removal of the diuretics a week ago Saturday.

He's more mentally alert, sleeping less, ambulating without a walker (scary), calling the cats by their proper names. I took him out to see his bar buddies yesterday (water only), and he was thrilled. When we got home, I took him down to the dungeon, and went around the side of the house to get firewood. I came back with the wood and he was on the front porch, and Maxie was in the front yard! "What are you doing?" I asked. "I wanted to help bring in the wood."

He's been helping to tend the fire today, although I told him only under supervision. The one time he did it alone, he left the firescreen partially open.

I have been saying I want my Jim back. I'm starting to see signs of him again.

The down side of no diuretics is that he is starting to retain fluid again. Ascites--in the belly--and edema--in his feet and legs. The GI guy is keeping him off the diuretucs because his kidney values are so bad. He is not absorbing fluids at the cellular level.

We met with the Hospice nurse and social worker today. Pretty uneventful, except the nurse balked at doing in-home blood draws (an issue we specifically addressed with the intake nurse). We did get his Hospice-paid medications on Saturday and a Hospice-paid (rented) wheelchair and walker today. No bath aide, because she could not make it until noon, and that's too late for both of us. The Hospice is trying to get us onto a 7am schedule.

Last night's substitute private-duty aide was a disaster. An hour late because she was lost, phoned and woke us up, I had to talk her in and then her cell phone died when she was a few blocks away. Jim and I both were up 2 hours after she got here. I called today and cancelled all aides until Patrick gets back next week. With Jim doing so well, I can get a reasonable amount of rest if I'm with him overnight. Lily will miss me (she won't sleep in the dungeon).

I get to meet a member of the FDMB on Wednesday. Her Janie Cat has cancer and Kris is bringing her over to PA for a consult with a vet oncologist. I am working on finding a Jim-sitter (if he's not in Day Care), or I will take him along. He doesn't want to go, but I can't leave him alone for 3+ hours.

We go out tomorrow for my PT and to visit the alternative potential Adult Day Care. Maybe even go to the grocery. I told Jim he could ride in one of those scooters with the basket on the front, and he thinks that might be fun.

Our love to Robin and Glen on their loss of Peri. They are still in such pain.

Too Much Change...

...and it's very upsetting to Jim. I really wish Patrick had not been taken out of the picture. Jim wants to cancel all overnight care until Patrick returns. I tried to do that this afternoon, but the scheduling woman, who is trying to watch my back big time, said I wouldn't be able to do a full week and a half without help or sleep. Of course, she is absolutely right. She said she would keep the "temps" on the schedule and that I could cancel each day as needed, without their 48 hour cancellation fee.

Jim HATED day care at Eden Rock. No need to go into details, but he insists he's not going back there without a court order! There's another place--further away--that we will go visit next week. He has promised to have a better attitude about another place.

We signed Jim into Compassionate Care Hospice today. I have a really good feeling about these folks. He will get an aide 5 days a week (and the same person each time, we're told) and a nurse twice a week. Also available are a social worker, a chaplain, and a massage therapist. They also will be providing him a quad cane (one of those with 4 feet) and a wheelchair. The intake nurse ordered refills of all his liver meds today. They cover meds for his liver diagnosis, without cost to us.

The aide is a CNA, and will make him breakfast as well as clean him and the room up. Right now she's scheduled for 9am, but we're on the wait list for 7am so that he can get to day care on the days he goes.

I saw my breast surgeon Thursday--everything OK--a 6 month follow-up. She said my continuing pain from radiation might last another 6 months. (That reminded me and I just took a Percocet. I can only do that once every 2 days while the overnight aide is here.) I had asked for another scrip for physical therapy, but left the office without it. When I called back today, and asked for an undated scrip, the office manager cam back with a message from the DR--if I don't restart my PT NOW, I will have a permanent disability in my right shoulder.

I called the PT office, and with some wrangling, got 3 visit next week with PT Bruiser. Jim will have to go with me (if he's not in day care), and PT Bruiser is OK with that. I just don't want to hassle with finding sitters, but I have got to get the cording in my arm (scar tissue) resolved. I can raise my right arm only to about a 45 degree angle without pain. That's my primary arm.

So life goes on, a day at a time. Hopefully Jim will soon settle into a Hospice aide/day care schedule that he is comfortable with.

I forgot to mention that Jim saw the GI Guy on Wednesday. Jim's kidney values are such now that he does qualify for the transplant list, although he's not interested. The DRs are withholding his diuretics because they take too much fluid out of his cellular system and put too much stress on his kidneys. As a result, there is fluid retention (ascites) coming back in his belly.

And I was pleased with the Hospice today, when they said they would not have a problem covering pericentisis for him. That's where a radiologist or GI DR uses an ultrasound to locate the fluid and a huge needle attached to vacuum bottles to draw the fluid out of his belly. Jim's had it done 3 times so far. The last time, in ICU, I think they took 8 liters of fluid out, but that was when he was on IV antibiotics, so they were pumping huge amounts of fluid into him.

This Hospice also said that putting Jim onto the transplant list does not constitute "heroic" measures, and would not cause him to be kicked out of Hospice. (Another Hospice told me that getting on the list was cause for discharge, because that is aggressive treatment.) The nurse said just being on the list is a hope, not a reality, but that if he were to be on the list and called for a transplant, we would have to discharge him from Hospice before the surgery. These people do talk my language!!

My best to all, and I'm sending good thought for Alice's Sebastian and Kris's Janie. (These are folks on the FDMB, so my cat friends will know what I am talking about.)

Off to bed. I only have 5 hours before the overnight person leaves.

New Breast Imaging Technology

Called Breast Specific Gamma Imaging (BSGI). See this link. Downside: "Once an abnormality is seen on BSGI, there is currently no good way to find it in order to do an accurate biopsy. More studies are needed to further develop this technology."

Patrick is going to be unavailable for 2 weeks. He's going out of town for training for his daytime job. Tomorrow night will be Rebecca. Sharon, the agency owner, is bringing Rebecca by during the day to introduce her to Jim. Hopefully, that will smooth the way for him to accept her.

I hate to throw this Patrick chaos onto Jim in the same week that we change to hospice and he starts Day Care. Patrick was going to be one of our "anchors" for the other transitions. Damn!!

Final surgery one month from today.

Prayers and thoughts please for Robin and her sweet Peri, who has just been diagnosed with cancer. The grief on the FDMB for Robin and Peri is overwhelming.

Update: Robin and Glen's Pericles has peacefully crossed the bridge.

Jim has Really low BP

Yesterday morning, it was something like 62/56. After exercise, maybe 76/63.

The GP is really worried and has me withholding both diuretics and the lactulose and asking me to fill Jim with protein. GP said he would consult by phone with the GI guy today.

No diuretics means Jim's belly is swelling (ascites). With no lactulose, he is becoming more and more confused. He is sleeping something like 18 hours a day.

But at the same time, he can be really sharp and strong. Yesterday, while his cousin was visiting, he got pissed that I kept harping on his lack of exercise, and he took off on his walker, up both flights of stairs, and ended up in my bedroom recliner watching the Eagles football game for about 1/2 hour.

I am livid with his home health care case manager. The GP called her Friday because he wants to have the PICC line removed. On Sunday, the GP said he hadn't heard back from her. I called her this am, and she said she had just left a message on the GP's office machine. I offered her the GP's cell phone number. She said she doesn't like to call DRs on their cells. "And, besides, I didn't work this weekend."

Getting them out. Getting Hospice in.

In fact, I'm so pissed right now that I'm getting off line and calling this case manager's supervisor. Enough is enough.

A Good Night and Day

After our adventure out to the DR and Day Care yesterday, both of us were pooped. Jim had had no nap. We ordered in a cheese steak and fries (yes, not allowed on his diet, but you need a real life on occasion), and then fell into bed ~8pm. He only got up one time during the night and did no wandering.

His BP this morning was 80/60, so the DR ordered no diuretics today. The DR also ordered no lactulose, but it was too late for that; he didn't forewarn me he might withhold that. He also said to increase Jim's protein intake so we had chicken parmesan for lunch and will have pork tenderloin for dinner. With Boost, a protein drink.

Jim had a pleasant visit with 2 club friends this morning, and I got a chance to rest and read. Tomorrow, Liza is coming to clean the house and Jim cousin is coming in the afternoon, so I have 2 chances to get to the grocery stores. I need to make another run to Trader Joe's for low salt stuff.

It looks like Jim's first Day Care day might be Wednesday or Thursday. Hopes and prayers that he likes this place!!

Patrick is in tonight. We are now completely on the every other night schedule (holidays aside).

Jim's Visits Today

Jim's GP was relatively happy with his condition. Somehow, after feeling so bad the last couple of days, Jim rallied and used his walker to get around today (not the wheelchair) and he seemed more mentally "there." However, my slight increase in the lactulose has pushed Jim's sodium back down a bit by dehydrating him, so the DR recommended no lactulose for 2 days. I told him I already had withheld for 1.5 days because I had seen the increased and looser bowel movements. I think the DR was impressed that I was knowledgeable enough about the meds to adjust to symptoms.

The DR wants to know Jim's BP tomorrow and if it's still as low as it "normally is (like 100/60), hold his 2 diuretics for the day. The DR wants to get the systolic up to 110. That usually only happens when Jim exercises extensively.

The DR also wants the PICC line pulled. He said that Jim's need for blood draws is diminishing and the risk/reward of the PICC line has changed. He does not want Jim to end up with an infection. We couldn't change his mind. The DR is going to call the Home Health Care Agency to remove the PICC line. After that, Jim will surely be discharged from HHC.

Then we stopped at Eden Rock, the Assisted Living Facility that does Adult Day Care. Jim was impressed, I think. It is a small place--24 residents and 3 day care clients. It has two levels for activities, and an elevator to get between the two. It's on a 4.5 acre lot, so there's lots of outdoor spaces and they grow alot of their own food in a huge garden that the residents help to tend. The place has no problem if Jim is on Hospice; a couple of their residents are on the same Hospice we will be joining.

I was amazed at the reduced level of ambulation of most of the residents at the facility. Alot of wheelchairs. I don't want Jim in a wheelchair; the walker is going to give him more exercise. However, we didn't see folks in wheelchairs parked in the hall staring at their hands. The residents are fairly alert, and they mostly went back to their rooms/suites after lunch. There were 3 in the front lobby folding cloth napkins for the dining room as we left; the head nurse said they gather there to try to overhear what's going on at the nurse's station.

I also was concerned that the facility doesn't seem to have "aides" roaming the common areas. I am really concerned about Jim being a fall risk. More and more he is abandoning his walker and trying to get from Point A to Point B by holding onto stable and sometimes not stable items.

There also weren't "quiet" spots where Jim could recline or lay down for his afternoon naps. But maybe that's a good thing. If he's awake more during the day, he may sleep better at night.

I was told there is one day care client (in a wheelchair) who comes to the facility by Paratransit, which Jim already is signed up for. The Paratransit driver wheels the client up into the facility. That amazed me, because I had been told it was a curb to curb service. Jim seemed to think that would work for him, once he got used to the place. I told him I would take him or pick him up the first few times.

Jim and I are going to sit down and check out when we want him to go during the month of January. We have the facility's activity schedule, and our own calendar with DR appointment for him and me, so we should be able to mark all of this out tonight. I hope to get him started there at least by Thursday, because I will be out of the house for 3 hours for an appointment with my breast surgeon.

And they will take him on weekend days as well as weekdays. So there may be times we do a Saturday or Sunday so that I can do chores outside the home more easily. This could be a Godsend, provided he likes it as much when he's staying there as he did on today's visit.

I even see the possibility of releasing/reducing Patrick if Jim likes this place and wants to increase his time there (I'm presently planning only 3 weekdays a week). If Jim comes home ready to sleep a full night, with only a couple of toileting times, I might be able to take over more of the night care.

We also were told that if they have a space (which they don't right now), they also can do overnight respite care. I didn't ask the price for that. But, if they had the space, that might have been a great alternative for when I am in and recovering from my final surgery (if I didn't already have my brother on the hook).

Gotta go. Jim is watching the "bonus footage" on a DVD, and I have to change the choice around every 5 minutes. (Even in his mentally clear days, Jim couldn't figure out the DVD remote. Heck, I screw it up myself every one in a while.)

Bye Ya!

DR visits

Saw the radiation oncologist this am. He didn't seem too concerned about the inflamation and pain in my right "breast" because the burn is healed. He did disagree with Dr. Boob trying to further expand that side this afternoon. I return to him in 6 months. (Left Jim alone with strict instructions not to get out of bed except to use the bedside commode.)

Saw Dr. Boob this afternoon. (A Transitions volunteer watched him.) Dr. Boob didn't want to expand the right side either, because with the inflammation, it already was larger than the left. He did a fill on the left to make them the same size. I had to sign a consent for the use of silicon implants in the final surgery. He said he would make a four inch incision on the outside of each "breast" to remove the expander implant and put in the permanent ones. I will not have surgical drains (YEAH!).

We talked about the nipples. I told him I wanted "low beams." He said it's almost surgically impossible to do high beams. He said that the nipples might seem high beam at first, but that they flatten over time. The whole approach for creating nipples is something like a french knot. The surgeon will gather up a bunch of skin and form it into a mound. Later, there is a tattooing process to make the nipples a "normal" color.

The last couple of days Jim's appetite has been off and he's had alot of abdominal gas (with cramps). I didn't give him lactulose this morning. I just put him to bed (4:30 pm) with a Prevacid. Looks like it might be another night without dinner.

He sees his GP tomorrow and we are going to have the PICC line fight, I am sure. Then we go to visit the Adult Day Care. Jim said he hopes that works out for him so that he can go outside and sit on a bench and I can work. Jim also spoke today with the clinical director of Compassionate Care Hospice. He felt alot better about the organization, and after we hung up, he said "OK, you win. We'll use them."

If and when we ever hear from Jim's case manager at St. Francis Home Health (she didn't show up today, instead another nurse was sent), we will have some idea of the timing for going to into Hospice. I still hope that after we see Jim's GP tomorrow and his GI guy on Tuesday we will be closer to understanding what it means to go into Hospice (in terms of what kind of "aggressive" treatment we would be sacrificing). We aren't giving up on Jim having quality of life, and that is the one thing the clinical director stressed to him today--they are 100% behind that. She actually said: "We don't want you lying in a hospital room somewhere. We want you out enjoying yourself at Delaware Park." (Which is a race track, slots gambling place that we would never go to, but we got the point.)

The thing is, I don't see much "aggressive, potentially curative" treatment for end-stage liver disease other than a transplant. And the GI guy already told us Jim is not sick enough for a transplant, and Jim didn't want to do the advance testing for when he did get sick enough. The things he's been through already--sepsis with IV antibiotics and low platelet count with blood transfusions--this Hospice said they would support as care to make Jim comfortable.

Anyway, again sorry to drone on.

A Wandering Husband

Jim is driving me nuts with his wandering. I bought an audio monitor so I could hear him, but he manages to get up from the bed or couch without his walker and take a stroll into the (hard) tile-floored powder room without me hearing a sound. He can even take these wanders with me in the same bed. Why he won't call my name I don't know. I even tried to set up a "baby gate" by blocking his access out of the bed with the wheelchair, and he managed to move that, get into and out of the bathroom, and sit back on the end of the bed without me hearing him. We had quite a squabble tonight about his "neediness" without asking for help.

I've been on the Internet trying to find a motion detector or personal alarm. I found a great Alzheimer's site for products, but with my damned dial-up networking, I couldn't get into the catalog. Had to order a land-based catalog.

I have 2 DRs tomorrow for myself. At 7:30 am is the radiation oncologist. After I recovered from the radiation burn, my skin felt good for about a week. Now the scar tissue is really forming on the right side and I feel like I am wearing a sports bra 3 sizes too small. I would love to take Percocet for the pain, but it knocks me out, and I can't be knocked out unless Patrick is here. So I only get a Percocet one time every 2 days.

No I take that back. I just went to take 2 Ibuprofen. Where is my head? Hope the IBU don't knock me out so much I don't make the appt. Oh, well, if I do, no big deal. This is a large office with a small client list. I can get in somewhere else on their schedule in a heartbeat. I also am concerned that I will be leaving Jim alone for 45 minutes.

Then at 2:30, I see Dr. Boob, the reconstructive surgeon. It's our final "meet" before surgery. He wants to put another 60ccs in each expander (although with the pain and swelling on my right side I'm not sure we are going there), so that he has some "extra skin" for the implant surgery on February 9. Jack, the fellow from the DE Hospice visiting (Transitions) program is supposed to be here at 2 to sit with Jim while I am gone.

I got a written notice from Dr. Boob's office about my surgery. It's not going to be in one of the surgicenters. It will be (again) in the Wilmington hospital OR, so I get to see all the same ole nurses and aides I have grown so fond of. (I always get a new permanent marker when I have to write YES and NO on my surgical sites. This time, they both will be YES.) Dr. Boob's office promises that the surgery will continue to be outpatient, and that I should be released around 6pm that day. I am thinking about taking a bus or cab there for my 1:30 check-in, and trying to find a friend to pick me up ~6. The hospital will not allow me to take a cab home. My brother Dave will be here, but his main job that day is to watch Jim. I may rethink that; I may ask Patrick's agency to send someone in for 3 hours to watch and feed Jim while my brother gathers me up from recovery and discharge.

I haven't been able to get back to PT since early last week, and the cording in my arms is driving me crazy. Maybe PT Bruiser could make a home visit? I don't think I qualify because it's not my immobility, but maybe she can work something out.

I am so sorry I ramble on. But this is like journaling for me, and very cathartic.

Best to all!

An Accidental Omelet

I can't believe that after 54 years on this planet, I finally learned how to make an omelet. And completely by accident.

I was making Jim scrambled egg beaters with a little cheese in them. Just as I had poured the egg beaters into the 9" teflon frying pan and sprinkled the cheese on top, Jim called me for a bathroom run. I put the lid on the pan and moved it off the heated burner and went down to the dungeon. When I got back up to the kitchen, I had a PERFECT fluffy, nicely browned omelet.

I've done it three times since, with PERFECT results. I am so proud of myself.

Slowly, things are looking up a bit. I increased Jim's lactulose from 15cc to 20cc twice a day, and it seems to have helped his cognition without having too much additional laxative action. (I told Jim's GP about this after I did it, and he had no argument.) Jim also has an eczema on his back and chest that I am treating with Benedryl and hydrocortosine cream (per the DR). His blood pressure continues to be way low, and he had Patrick wake me last night with the news Jim wasn't feeling well. I could not register a BP on him. We did some exercises together for about 10 minutes and he felt well enough to go back to sleep, with a BP of 82/60. We also exercised today.

We may have a show down with the home health agency tomorrow. They are supposed to come in to draw blood. The nurse said she is ready to discharge Jim, after showing me tomorrow how to do the sterile change of his PICC line dressing. I am not comfortable with that. I am an accountant, not a nurse. I have been flushing the lines, and that's getting hard enough. (The nurse from the company that provides the line maintenance supplies said it sounds like the IV line is becoming clogged and that I should flush both lines with heparin--a blood thinner--twice a day.)

I called Medicare to explain my discomfort with the situation. I was told that the DR discharges the patient, not the agency. So when I spoke to the DR yesterday, I told him that he may need to have another conversation with Jim about Hospice. He also said he did not want Jim discharged from home health until at least he sees the results of the Thursday blood draw on Friday. He said that Jim may be stable enough to remove the PICC line, which the home health nurse could do. I'm not comfortable with that either. I want that PICC line to stay in because Jim's veins are still collapsed and a veinous blood draw would continue to be difficult and painful. If Jim goes into Hospice, they would not approve the insertion of a PICC line, but they would maintain one that is already in.

Jim's badly bruised hands are starting to heal up some. Places that were bright purple 2 weeks ago are a pale lavender now. One of the home health nurses said that it is because he is off the prednisone. She said that was what was causing the bruising. Funny, I thought it was his liver disease/platelet count.

We have arranged with Patrick and his agency that instead of using him 4 nights a week, we will use him 7 nights over 2 weeks--every other night. That way (unless there is a holiday week), I won't have to take care of Jim more than one night in a row, and we won't have to pay for Patrick more than one night in a row.

I also found some time today to call around about Adult Day Care, and I've found an assisted living facility that takes in a few people every day for that service. Because the day care people are "mixed" with the assisted living population, for activities and meals, the facility does not qualify for state licensing as an Adult Day Care. I gave the director all the bad news about Jim--that he needs assistance on his walker, that he needs assistance toileting, that he can sleep quite a bit during the day and for that I would prefer him in a recliner or bed, and that he is mentally confused and physically weak with all the weight he has lost. It didn't seem to scare her off. I did also explain that he generally is not combative in his dementia.

We are going to visit this place on Friday, after Jim's GP appointment. The director said they could fit Jim in 3 days a week. She also said I could pack his lunch so that he remains on very low sodium and they would feed it to him. And the best news is it's only $75 for 8 hours, 1/2 of what we are paying for Patrick's 8 hours. This IS going to happen because I need to get him out of the house so that I can work. He also needs to get out of the dungeon, get some ambulation, and some socialization.

Hopefully, if Jim grows stronger with the increased ambulation, I can set it up so that the state's handicapped transportation van (Paratransit, which Jim already is signed up for) will take him there and bring him home. That way, I won't have to spend the--maybe--1.5 hours a day it would take to transport and transfer him. The only thing is that the Paratransit will only assist Jim onto and out of the van, either using the steps or through the lift, from the curb. They will not take him from the house to the van, or from the facility to the van. Maybe this facility can send someone out to the curb to bring him in and take him out.

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!!

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!

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.

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.

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?

PICC Line

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.

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!

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.

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.

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!

"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.

"You know....

...you'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.

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!

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.

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."

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.

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.

SIGH!

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.

SIGH!!

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