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!!
Tuesday, January 30, 2007
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.
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.
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.
Sunday, January 28, 2007
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!!
Saturday, January 27, 2007
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.
Thursday, January 25, 2007
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.
Monday, January 22, 2007
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.
Friday, January 19, 2007
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!!
Monday, January 15, 2007
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.
Saturday, January 13, 2007
...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.
Tuesday, January 09, 2007
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.
Monday, January 08, 2007
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.
Saturday, January 06, 2007
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).
Friday, January 05, 2007
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.)
Thursday, January 04, 2007
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.
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!
Wednesday, January 03, 2007
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.