Today's Story

Dr. Cutter didn't pull V's surgical drain. Another week until another appointment; maybe it will be pulled then (4 weeks post-surgery).

The home health aid (HHA) did not show up when V had her DR appointment on Thursday. Jim sat here alone for 2 hours feeling abandoned. When the HHA showed up on Friday, Jim sent her away. He doesn't want to work with her. The agency says they don't have anyone else to send. V has to work on Jim to accept the situation. We are getting different stories from the aid and from the agency about why she didn't show up. Alot of finger pointing.

The RN and the OT continue to work out well, and Jim likes them.

The PT has been another nightmare. We basically fired the first one, and the 2nd one will come in for the first time on Monday. The new PT wanted to come Friday, but Jim refused, saying he was too tired for a PT session.

Jim was having a hard time on Friday because V had invited the departing neighbor nurse Mary to stay here her last day and night in town. Jim got jealous that someone else was going to get V's attention (he admitted the jealousy). Jim wouldn't talk with Mary, and was very agitated all day. He stayed in bed moping most of the day, and thus had V up most of the night because he was slept out.

Mary, V. and Mary's stepson Trevin had a great going away party Friday night--grilled filet minion and steamed king crab legs, with roasted vegetables, baked apples, salad, steamed brocolli, and wine for the ladies. It was a major feast!!

--Thank you Mary for having been here to help as much as you did with my journey and with Jim's!! V loves you, and your little dog too. Have a wonderful time in New Hampshire in the love shack with your husband, and all the best, the very best, for your happiness back in New England.--

Jim's brain dysfunction continues. Today he was changing the channel and lowering the volume on the TV with the remote control. But the control wasn't in his hand. Just sitting there punching the air. He picked up his cup of tea and drank some, but the cup wasn't in his hand. This is the first time V has seen this "absence of physical object" behavior. That was clearly a brain injury type of behavior.

Jim's brain CT scan will happen on Wednesday, and the GI specialist did find a neuropsychiatrist for a consult. V left that head DR, named Christopher King, a message that she wanted an appointment for Jim.

Venita is really scared about this head stuff. This will be a full time job for her, watching him, keeping him safe from falls. He is finally getting better physically; he's able to get out of a chair by himself, he far less shakey and wobbly. But he is aggressive and often passive aggressive about what he wants. Thank God V has known him for over 20 years, so she know his personality and what "works" and doesn't for him in terms of motivators.

Venita so hope this head stuff is the result of some of Jim's medicine. No one ever told her that the liver failure might have this sort of outsome. If this is permanent, this is going to require some complete realignment of our lives!! V knew this eventually would be needed, but not at this point in life!!

Can't Believe I Lost the Update!!

Damn computer, which has some sort of bug, rebooted when I was down checking on Jim. I had just drafted a huge update about the home care people and the GI Dr. we've been seeing the last two days.

So cut to the short story. Jim's cognitive function seems to continue to fail (or not improve). Today, the OT who gave him intake and the GI Dr. with whom he had a followup saw it too. To deal with it, the GI Dr has cut certain of Jim's medicines, raised the Lactulose (the ammonia binder), ordered a brain CT scan, and is looking for a neuropsychiatrist for a consult. It could be that alcohol or something else has caused physical brain damage. Please, don't let that be the case.

Tomorrow I see Dr. Cutter for my last followup before the spring. The surgical drain from the mastectomy seems ready to come out after 3 weeks, thank God!! It does hurt, and once it's out, I can shower!

~~V

Random Babbling

I've heard from many friends, both in comments here and otherwise, about not sacrificing my own care to care for Jim. Thank you for your concern, and be assured that I am trying to do that. I have a serious disease, but right now Jim's medical condition is more serious than mine. I have only a few more steps in my journey, unless the train jumps the rails somewhere and metastatic disease becomes part of the picture.

Mary my neighbor nurse, who is a neighbor for only 2 more days before she moves back to Maine/New Hampshire, suggested that Jim's encepalopathy/dementia might be the result of something other than his liver disease. She suggested that he might have experienced a stroke. I wasn't sure how to react to that, as I have always thought of a stroke as also involving one-sided physical weakness. Mary suggested that I ask one of Jim's DRs about it, and that a brain MRI might be needed to see whether a stroke is the cause of this problem.

I got bold today, and left Jim alone twice for about an hour each time when I went first to the grocery, and then to Dr. Boob's office to pick up a scrip for Percocet and to the pharmacy to have it filled. I'm still having pain in the drainage area of the mastectomy. The only problem with leaving Jim by himself was that he took naps, allowing him to get in front of me on the sleep meter. Right now he's sleeping (snoring in fact) and I'm here writing. I'm up because he woke me 4 times in 3 hours to go to the bathroom or move from the bed to the couch. Woken enough times, I'm up for good. I told him that he's going to have to read rather than nap when I go out for chores.

Today we get a home health aide (HHA) at 8:30 and a physical therapist between 10 and 11. I am concerned about the HHA. She is a new employee with this home nursing company. An employee new to this type of gig combined with a client similarly new could be fraught with misunderstandings about what should/can be done. I'm also concerned about Jim's shower, which for me is the whole point of getting an aide. She will have to take him up 12 steps to get to a shower. He's barely walking across the room. Depending on the circumstances (how large and experienced she seems), I may ask her to give him a bed/couch bath, and maybe ask the agency for a different aide. I would love to have a big burly young man.

My head hair is starting to grow in. So many people told me tales of post-chemo hair being different in color/texture than it was before. Doesn't seem to be the case with me. Seems still to be straight, thin, and medium brown/grey. But it's only ~1/4 of an inch long. Maybe more length will show something different.

With returning head hair, other body hair also returns. It's been a nice 6 month respite from leg shaving. I will be avoiding underarm shaving for awhile because of the surgical scars/corded tendons in both armpits.

My mastectomy area continues to drain more fluid than "allowable" for the surgeons to remove the drainage tubing. This situation is annoying because I don't drain solely into the Jackson Pratt "grenade;" I also seep from the drainage site--alot. I don't wear a dressing over the wound because I can't reach there to apply bandages. Instead, I bought boy's cotton A-shirts, which I change 4-5 times a day as a dressing of sorts. Dr. Cutter thought the A-shirts were a grand idea.

More Dementia

and it seems to occur when Jim is faced with a non-routine situation.

Jim woke up fairly strong and clear headed this morning.

Then the physical therapist came to do an evaluation.

After she left, Jim said I should have told the truth. After discussing this, I come to find that he believes we've never been married.

This Is Harder Than I Thought It Would Be

Jim is in such a state of confusion, I feel like I am dealing with someone with Alzheimers.

It has to be his ammonia level, combined with the change in situation. (Jim got terribly confused the first few days out of the hospital to Shipley.) I feel like he's had a week's setback. Jim had blood drawn on Friday, and I'll try to get the results of his ammonia level from Shipley today. I suspect they cut his lactulose back too far. If his ammonia is back up, I'll call his GP to see whether and how much I should increase it.

The nature of Jim's confusion--pretty much everything. He tries to use the TV remote to call people (even though he doesn't have their numbers) and the phone to change the TV channel. Therefore, my intent to use the phone as an intercom (which it does) will not work because who knows what TV channel Jim will end up with me if he tries to buzz me.

He's also became pretty belligerent yesterday. Kept calling me a bitch (with different adjectives in front) because I would not place his walker within his reach whem I was out of the room. He spent an hour sorting through the money in his wallet, putting the bills in different order, and seeming to count it. Then later he told me he had to go to the ATM because he has no cash. I offered and he accepted an Ativan for his anxiety. Unfortunately, that really knocked him down and he didn't want much dinner (I had made a roasted pork tenderloin with fresh fetticine with pesto).

I keep hoping this is all an anxiety thing that will clear itself up in a few days. Luckily, I found a message on Jim's voicemail that one of the GI specialists had scheduled an appointment for him this Wednesday, and Jim wants to go then. Maybe she can shed some light/hope on this dementia he's experiencing.

A visiting nurse group started its home health care evaluations today. A nurse did the evaluations for skilled nursing care and a home health aid. Jim will see a nurse ~3 times a week, and she will take his vital signs, check his breathing, and check him for signs of recurring liver disease (such as belly bloating and swollen legs). She also will draw the blood for the required lab work.

The home health aid will come in 3 times a week to help with personal needs, such as a shower, shaving, toothbrushing, and do his laundry and feed him a meal as needed.

Tomorrow we will get the evaluation from the physical therapist. There also is supposed to be an occupational therapy evaluation somewhere.

After a hospital stay, Medicare pays 100% for these home health services for up to 9 weeks is deemed medically necessary by the service provider.

Would I do this again? Probably, but I 100% wouldn't want to. Taking care of Jim right now is a 24-hour operation that is thankless when he starts calling me a bitch, and stressful/guilt-inducing for me when (in an outside voice) I have to set rules or correct him about how he is mobilizing. But I'll discuss that with him after he gets better, which I expect him to do. We'll have a plan in place in case this happens again, whether it's him or me that gets into this nasty place he is in right now.

My apologies to Betty, who called yesterday while Jim was in the middle of an episode. I understand, Betty, how you first thought Jim was teasing about me being a bitch. We had bantered in front of you when you saw him in the hospital. Now is indeed different. He is having dementia espisodes that I am completely untrained to handle.

For example, he woke me tonight yelling and ranting about 8 women in 4 planes that were crashing. We were up more than 2 hours with that in his mind. Now he's been down in the basement sleeping for 2 hours while I've been on the Internat checking the FDMB and writing this. I better head off to sleep; I can't let him get too far ahead of me in the sleep department.

Jim's Home

Yesterday, Shipley told us they were releasing Jim AMA--Against Medical Advice. They told us Medicare would not pay for any of his stay there if he left AMA. Also, the DR refused to write any scrips for meds, labs, or a home health care evaluation.

V called Medicare, and was told that Medicare would pay even with an AMA discharge. V called Jim's GP and asked him to write the scrips. Apparently, DR GP got on the phone with the facility DR and all of a sudden Jim is not being released AMA; a clean release and scrips written. V had to sign a statment that the facility's staff and DR had recommended against Jim's discharge. She did.

What a mess when V went to get Jim this morning. Apparently no services the day of discharge. They has given him breastfast and meds, but no clean up and no PT. I had told Jim he had to do both PT sessions before he came home, so he was really thrown a curve when they refused his PT.

Jim was terribly confused. His room nurse, who had never treated him in the 2 weeks at Shipley, had no way to measure Jim's confusion. He gave him an Ativan for anxiety.

Jim's home now. Had a nice lunch and a 2-hour nap with Max and Ennis and V, and seems a little stronger. He even tried to start an argument with V about how he did need his walker.


Freaked V out when her neighbor nurse Mary yesterday said that Jim may never be able to go to his own home and would have to live with V. That wasn't the marriage we signed up for.

The Sun Will Come Out . . .

. . . tomorrow. Although it's pretty bright today; crisp and clear.

The neighbor just came over and put a hand held shower head into Jim's bathroom. The neighbor also said he could install whatever handicap rails we might need, even over the 54 year old tile that is in the bathrooms.

Getting real close to having everything ready for Jim's homecoming.

I still need to see the home health care orders the facility DR writes. I need them to include aide help so that someone else can struggle him up the steps to the shower the first few times. Want to be able to kitty snuggle nap at those times as Deb suggests, although I'm sure the first time I'll be on pins and needles, fearful the aid will drop my precious Jim package.

About all I need to complete the picture is a husband with a positive attitude. He MUST keep up with his PT, and he's been very bad about that in the past.

Jim and I are going to practice single rail stairs at PT today. I have rails on only one side of one step of the stairs in my house.

I have moved next Thursday's reevaluation for radiation therapy back ~ 5 days so that Jim is closer to self sufficiency before I leave him in the house alone for the several hours that appointment takes. I still have a surgeon follow-up next Thursday, but that should only keep me out of the house for 2.5 hours, not the 6 hours the 2 appointments on the same day would have required.

Thank you all for all you do for us!!

Jim's Getting Out of Dodge

As Deb would say.

St. Francis turned Jim down. His condition is not acute enough for their program. I knew that he would not fit with SF when I visited the facility this morning. SF rehab is working with patients coming out of ICU on ventilators or recovering from strokes to give them as much of their lives back as they can before they are sent to an outside setting, be it home, assisted living, nursing home, or whatever.

I didn't tell Jim about not thinking SF would be a fit for him. When I got to Shipley, the SF nurse was there reviewing Jim's chart. She left a message with his room nurse before she left (without speaking to Jim) that he was not a fit.

Jim started to take another dive into anger/depression when I said, basically: I made you a promise you would not be at Shipley at week's end, and you won't be. If SF won't take you, you are coming home and you are the only one who can stop it. I went to tell the social worker, but she and the head of nursing are out at training for 2 days. I told the head of PT, and he said he would inform those who need to know to make this happen. When I got back to Jim, he was looking even more anxious. I asked him what the problem was. He said he didn't think I would keep my promise, and that he is scared he might cause me problems or get hurt if he comes home. (Why didn't the boy listen to this before now?) I told him that until the discharge, he could change his mind, but that after that, he's in my care, come what may. (But I hope he knows that I will put his safety first.)

I started working this afternoon on trying to find a certified nurse assistance to watch Jim for 5 hours next Thursday when I have appointments with Dr. Cutter and with the radiation oncologist. I also started working on a cancer grant to pay for this "respite care."

We'll also need to work through Shipley to get an RN in for weekly blood draws and folks in for physical and occupational therapy. If ordered by the DR, those will be paid for by Medicare for an "appropriate" amount of time.

I went to Target to stock up on some needed "home patient" supplies. I also called one of our friends to move a bureau from a bedroom into the family room where Jim will be staying. I have to start setting his familyroom/bedroom up tonight.

Thanks to all who have provided such strong shoulders the last couple of weeks: here, email, FDMB PM, in person, and on the phone. Lordy, I really know I could do this if I had you all camping out in the backyard. Kind of like that Singular Network commercial, where the pack of people follow the cell phone user around? Absent that, we just have to trust that Jim and I can do it with your encouragement!!

Another Day With Lots of Tears

At Jim's care plan meeting yesterday, we announced Jim's exit. The Shipley group clearly came hunting for bear. Although they did take some messages about the unacceptable care to heart, they insisted that Jim continues to need institutional care because he is not yet independent and I am too weak to keep him safe.

Late in the afternoon, we saw Jim's GP. He too had the same message. It was at that point I saw the spirit just ooze out of Jim. Jim wasn't outwardly crying as I was, but he was clearly in the same place.

After thinking about Jim's comments, the Shipley group suggested a different type of facility. There is an acute care long-term facility inside one of the local hospitals (St. Francis) that focuses on rehab, not warehousing. Even though it's more of a hospital setting, the Shipley folks think that it will have less of the environment that Jim finds so objectionable--elderly people sitting around in chair all day holding their heads, mumbling to themselves, and waiting (hoping?) to die. I asked Shipley to have St. Francis do an assessment, and I plan to visit SF today for "acceptabiilty." We also will need to make sure that the Medicare rules for post-hospitalization rehab don't get violated and that Jim's insurance will pay for this.

The acute onset of Jim's liver disease was ~4 weeks ago. Jim expressed his concern to his GP with how long this was taking. The GP said that 2 more weeks of care might be needed. Jim said that was an interminable amount of time. I asked him to remember that I had been on my breast cancer journey for ~9 months now. That seemed little comfort to him.

The GP did say some encouraging things about how Jim was recovering. He said to dismiss the "end-stage" comments of the nurse. He said he would take more time looking at the >100 pages of records Shipley sent over to see whether he had any medical suggestions for more proactive care.

When we left the GP's office, Jim said that he didn't want any more visitors. He is weary of the embarrasment and joylessness that is Shipley. His GP said he would talk to the Shipley DR about putting Jim on an antidepressant. He seemed truly concerned about Jim's emotional state.

After I dropped Jim off at Shipley, I went outside, leaned against the wall, and cried.

We get to try to pull ourselves up by the bootstraps and do it all over again today.

How About a Day Without an Obstacle? (by V)

Sunday, Jim (after being advised by one of the nurses that it was his right), refused a dosage of Lactulose, the laxative that is the ammonia binder. When I heard about this, I called the nurses desk and asked to get a meeting with the facility DR. The person on the phone put me on with the Director of Nursing, Debbie, who seemed to have the sole purpose of keeping me from the DR. When she found out about the missed Lactulose, she started saying things like Jim is in "end-stage liver disease," is "terminal," and "will never be released outside of this or some similar facility."

Well little bitch Mama Venita went ballistic. Never has a DR said these things to us. I insisted more that Jim and I speak with the DR, which neither of us has since he was sent to Shipley 10 days ago. Debbie said she would do her best to make that happen on Monday, and I got off the phone, called Jim, and relayed the info to him. During our conversation, Debbie entered his room, started talking with him, told him I was lying, took the phone from his hand, and insisted to me that she had never said those things to me. I told her I was finished talking with her, but she wouldn't give me Jim back, so I hung up.

Jim called back shortly. He had suggested to Debbie that she was out of control and should go home. She said she was going to do that, but spent ~40 minutes outside his room ranting to staff about the situation. His room nurse came in later and told Jim that they were working on getting the DR to call me at 10am on Monday. I showed up in Jim's room with a pizza ~8 pm and stayed there watching him until 4 am.

(This facility's weekend care level is abysmal. Jim had asked for dinner to have a hot dog, french fries, and orange juice. They sent him fries and juice, with a note that there were "no hot dogs in the house." My. Couldn't they have asked him if he wanted something else they did have? The last cup of water he was given--they date the cups--was the 11-7 shift on Friday night.)

I got to Jim's room today ~9:15 am and got a call from the DR's nurse practitioner shortly after that. She explained that we misunderstand the nature of nursing home care. It is not their job to provide medical care; Jim was released from the hospital at an appropriate level of "wellness" and the job of the facility's nursing staff is to do their best to maintain him at that level. The primary purpose of the nursing home is to provide rehab to allow the already medically stable patient to return home (if that's the case) or to "warehouse" the terminal patient. She did not speak to the issue of Jim's diagnosis or prognosis, but then she didn't have his chart there.

Today's RN floor supervisor listened to my part of this conversation. She asked where I got the notion of end-stage and terminal. I said I would not name names but that it came from their nursing staff. She went to get Jim's chart. She came back and said she had just had a chat with Debbie (Director of Nursing, remember) and that there was nothing in Jim's chart about end stage or terminal, and that Debbie said she told us both yesterday that Jim is NOT end stage or terminal (yet another change of story). (Jim, who often can't keep his mouth closed in sensitive situations, told the floor supervisor that it was Debbie who told us this.)

Man, is this getting long. I'm venting.

Around 11 am, I went to see Dr. Boob. He said I'm healing well, but the drain still isn't ready to come out.

After that, I went back to Jim and told him we needed a plan for tomorrow's care plan meeting. The staff has invited the DR to join us there, so we finally get to meet/hear from her. I told Jim that I thought our plan should be for him to come to my house before the weekend, and he happily agreed. The weekend nursing care is horrible, and we can get physical and occupational therapy here. I just want to make sure he is medically stable to come home.

Last night, Jim agreed to get a new GP, and to use mine. But he can't see her until mid-October. He also can't see the GI specialist until that time. So I got a 30 minute appointment with his soon-to-be-former GP for tomorrow at 5:30 PM. I asked for enough time for that DR to sit down and discuss Jim's diagnosis, prognosis, and quality of life with us. I'll try not to vent about how the DR didn't take appropriate blood tests to see this coming down the road.

While I'm thinking Jim and I are in just about the worst spot anyone can be in, I spoke at lunch today with another resident of the home. He must be mid to late 70s. Early last November, his wife was admitted to Shipley after a hospitalization (I don't know her health issue). He had planned eventually to bring her home (he said as he had done in the past), but he had an attack of congestive heart failure the day after her admittance, and he ended up in the hospital for 2 months. Then he was himself admitted to Shipley in the room across the hall from her. I'm not sure when, but she did pass, and he told this whole story with red-rimmed teary eyes. I'm thinking--woah--we haven't even started to see the worst of what life can throw at you. He had no children to help with the transition, but did have a niece. He mentioned that he has always eaten green vegetable (broccolli, spinach) with vinegar, but that Shipley doesn't have vinegar. I'll be taking him a bottle of white wine vinegar tomorrow. I hope to find what more I can bring him; he's a sweetheart.

Sunday Update

We are both in our own little pain places right now, wrenching our way back to normality, wondering how or when that is going to happen/be able to happen.

For Jim, the way back seems to be medical. V's to do list for Monday includes a call to the GI specialist, because we aren't sure how much they are involved in his treatment right now. There also will be the Tuesday Shipley care plan meeting, where we can ask more about their medical approach. Sometimes, it seems like Shipley's usual focus on long-term care keeps them from being too involved with short-term rehab, which is our goal.

For Venita, the way back for now seems to be rest (which may keep on for a while as V moves into radiation). V only spent 3 hours out of the house today (chores and Jim). Jim seems to understand that V will be spending less and less time with him at Shipley so she can heal and get set up to get some work done. However, she is only a phone call away.

Which Jim had to use last night because he couldn't get his nurse to give him the proper PRN meds. But when V called the nurse, the nurse said she had to hear it from Jim's mouth, not V's. V asked for a "three-way" conversation with Jim, V, and the nurse, but the nurse refused. The problem was there are 2 meds that start with the letter A that are PRN for Jim--Ambien (a sleeping pill that seems to have given Jim nighttime hallucinations) and Ativan (an anti-anxiety medicine that Jim has responded well to). Bitch nurse wouldn't take V's word for it that Jim wanted the Ativan. Jim was able to get the right medicine because bitch nurse brought the charge nurse in with her, probably because on the phone V put up such a stink about the bitch nurse not working with her.

So, Jim's medical records now indicate his nighttime confusion is the Ambien. Fine. Isn't that the sleeping pill that the House of Representatives Kennedy boy said was his problem this year when he got involved in a DUI auto accident on capitol grounds and then ended up back in drug rehab/detox?

No spooks have visited Jim for two nights now. Both night were Ambien-free. And the first of those two nights, V slept overnight in the empty bed in Jim's room. V hasn't blogged the spooks stories. On Thursday morning, Jim explained to V that the facility had rounded up indigent people and put them on the floor of his room to sleep. Harmless enough. Friday morning, 3AM, V got a phone call from Jim. He wanted her to call the police. Several people in Shipley had been murdered, the facility suspected Jim, but they refused to call the authorities. V called the nurse, who was going to take Jim Ativan. Jim refused the medicine until the police were called. V convinced Jim by phone to take the medicine. V drove to Shipley and spent the rest of the night sitting by Jim's bedside while he slept. She was exhausted all the next day. Friday night, V slept in the extra bed, not really sleeping until about 6AM.

V didn't feel bad leaving Jim alone today. He can watch baseball and football on TV. Tomorrow, he'll be back into several hours of PT a day. (No PT on weekends.) V tried to walk him today, but he moaned and groaned about it. V needs Shipley's PT folks to help keep Jim on track. V's concerned Jim will lose focus and direction when he comes home.

My-o-my, I (Venita) hope there will soon come a time that I don't sit here and complain about the hands we've been dealt. Weatherwise, it's a beautiful day today. Clear crisp early fall day. Hot in the sun, perfect in the shade. I took Jim to sit in the courtyard at Shipley for awhile. And Max is here, pulling my fingers off the keyboard and licking them. I found some nifty fall-themed bowls at Target today to go with my new kitchen dishes.

Another fun point. Last night I gave Max his SubQ fluids. 100 ML. He was getting antsy with the skin stretch in his right side at ~50 ML, so I moved the needle to the left side. When all was done, Max looked all pumped up, like a football player. I got laughs from that.

Many good and fun things happening right now. We just need to think about/focus on those.

What Might We Need?

Today, Dr. Cutter told V she had heard about Jim's ailment, and she expressed concern for us both. She asked whether we had nearby family to help, and we don't. She suggested calling the Delaware Breast Cancer Coalition for help. V called this afternoon and spoke to a woman named Cathy.

Cathy listened to the whole story and expressed empathy. She asked what kind of help we might need, and I said I really didn't know what we needed or how they might help. Cathy gave the example of a single Mom of 2 kids who had a double mastectomy, and the Coalition was able gather volunteers to take the family meals for 2 weeks. (Dr. Cutter said the Coalition had unrestricted funds they could use to help.)

Cathy understands that we won't know our limitations until we see our ability levels when Jim comes home. We also presently don't know what kinds of home health care Medicare might provide, although we do know it will pay for three in-home physical and occupational therapy sessions a week (although we don't know for how long).

One thing V suggested we might need that Medicare won't pay for is someone to come in to watch Jim while V is out for DR appointments.

Cathy and V will touch base with each other early next week.

If you have any suggestions for the type of help that we might need and that it would be appropriate to ask for, please let us know.

Steve, Need IT Help

The "front page" of the blog got messed up somehow. There is a right hand column that has links to things, and those links used to live at the top of the page. Now they live at the bottom (at least on my screen--Explorer browser), making them essentially worthless. However, when I print the front page, those links are at the top.

The place that controls how the blog looks is in the "template" tab in the dashboard. Can you take a look to see whether you can fix this? Thanks!~~V

Should Have Had a Breast Weight Lottery

Venita didn't realize that breast tissue weight was one of the stats in the pathology report. V's post-biopsy nearly B breast tissue weighed 495 grams--slightly over a pound.

Only one lymph node was taken for the sentinal node biopsy. Final result--no metastatic disease. Because only one node was taken, V can have blood pressures/IV lines/blood draws from her left arm without the possibility of lymphedema.

The breast tissue showed no remaining evidence of invasive carcinoma or ductal carcinoma in-situ. There were mulitple areas of lobular carcinoma in-situ, but Dr. Cutter says that some lobular carcinoma in-situ (a pre-cancerous condition) is common for most women. Dr. Cutter said she would be concerned if there had been ductal carcinoma in-situ remaining; that would indicate the chemo had not been effective.

Dr. Cutter thinks the incision is healing well, but there's still too much fluid to pull the drain (currently about 120 ccs a day; have to get down to about 20 ccs). She will see V in 2 weeks for surgical follow-up, and then 6 months after that.

Time to call and start the process of radiation. It will only be necessary on the right side.

Thank You So Much, Annie

Annie went home this morning. Her help and her friendship were a Godsend, and we know that you also appreciate the time she was able to spend with us. Let's have a standing ovation for Ms. Anna Maria!!

V was a little tough for Annie to keep in line. V sometimes wanted to do more than she should. That's how V is and that was frustrating for Annie (and for V). Annie was very good about keeping V on her meds. She also was there whenever V crashed from doing too much.

Thank you Anna Maria. We really appreciate you being here for us. More than you know!!

*******************************************************************************

Today is Jim and Venita's 3rd wedding anniversary. V went to see Jim at lunchtime and stayed 3 1/2 hours. Jim was in the dining room when V arrived, and she looked in on him though the window between the hall and dining room. A sudden huge smile on his face! V loves to see Jim respond so positively to her.

Jim is getting less confused. His confusion is called encephalopathy and results from increased blood levels of ammonia, a toxin that his ailing liver is unable to process. He is being treated with Lactulose, a powerful laxative that acidifies the stool and thereby traps ammonia and drags it out of the body along with other fecal material. The goal is for Jim to have 2-4 loose bowel movements a day. Jim eventually will be on a maintenance dosage of Lactulose, with a goal of 1-2 loose bowel movements per day.

The problem is that Jim is not having loose stools; he is having explosive, unexpected, watery stools. (Yes, it's tough sharing these kinds of details with whomever cares to read them on the Internet. But this is one way for us to vent and a way for us to help others understand.)

V has spoken with a number of folks in the Shipley SNF management, and Jim's care is getting better. They understand the embarrasment and distress that Jim is having over the poop problem, and are working at getting the floor staff more on board with dealing with Jim with sensitivity. They also are trying to anticipate the timing of the explosions vis-a-vis giving Lactulose/eating food/Jim's activity schedule so that Jim as close to the bathroom and not in the middle of something else important (like PT or a meal) when the problem occurs. The management also seems to now understand the importance of communicating with V about Jim's status. V is the alpha female and bitch Mama for Jim, and someone has to deal with V if they are hurting or not helping Jim.

Next week Venita has a "care plan" meeting with the Shipley SNF management about Jim.

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As for Venita (this is a blog about her breast cancer, isn't it?), she has been feeling good under Annie's care. V wanted to wean from pain medicines, so she took nothing this morning. Big time pain set in when she was visiting with Jim, so she's now back on Percocet. She has a post-surgical appointment tomorrow with Dr. Cutter, the breast surgeon. A friend, Ellen, will be driving her there. V has a drain, but unfortunately, it has not slowed enough for it to be pulled tomorrow.

V also has a post-surgical appointment next Monday with Dr. Boob. Fingers and toes crossed that the drain goes then.

At discharge on Saturday, Dr. Boob said everything looks OK with him to start radiation therapy on the right side. If Dr. Cutter also is OK, V will call to set up the intake appointment for radiation.

Jim's Confusion is a Nightmare

Jim didn't remember that V had a surgery, and got angry with her for not showing up to visit with him. Then he thought V had been in the hospital for 3 days, and got angry with her for not explaining the reason for the extended hospital stay. Jim wants to come home because Saturday night his nurse left him sitting in his feces for a full hour. V has so little energy for dealing with this.

Today, V will stay home. She will try to reach the facility DR by phone. She will try to find out what kind of lab tests have been done and what the results have been. She will try to find out why this GP has not contacted Jim's GI specialists.

V's pain meds are not knocking her out like before. More than likely the stress of Jim's situation. She needs some solid sleep and is not getting it. V's so thankful that Annie is here to help, especially to feed V when V isn't hungry.

Take care all.

~~V

Venita's Home

Surgery for the left breast mastectomy/expander implant finished around 4PM. V had alot of pain/disorientation/dizziness in the recovery room. She was taken to a room on the surgery floor of the hospital around 5PM. (Not the 23-hour surgical ward; that was not available last night.)

Last night's pain was more severe than what she remembered from the first mastectomy. She thinks her pain threshhold has been lowered by the chemo. She was asking for percocet and morphine constantly. She couldn't move anything on the upper left side without pain. She would try to fall asleep, her left arm would spasm involuntarily, and the pain would bring her back awake. Finally, she asked for a sling. That helped to immobilize her left arm so that she got about an hour's sleep.

The anestheologist put V's IV's line in her foot. That's supposed to be the location for all future pricks and sticks because of the possibility of lymphedema in her arms from having had lymph nodes removed. But, using the feet seems to be an unacceptable solution because V's veins there are SOOOOO tiny. May need to go for the neck.

V's maid of honor Annie is here taking care of her. V's is indeed being pampered. She got to choose the dinner menu and Annie is out at the grocery right now. Annie also offered to clean up some of the mess in V's office, and because Annie and V are employed in the same field, there's a good chance V will take Annie up on the offer.

Jim has become an issue. Yesterday, 2 hours before V was scheduled to report for surgery, Jim called to say that he had been abused at the nursing home and wanted to come home NOW. V didn't have time to get to the bottom of the "he said/she said" thing, but she went to the home and tried to calm Jim down and asked him to behave himself. She also asked the nurse to ask the DR to order labs to see whether Jim's ammonia levels are off again.

After her surgery, V called Jim, and his confusion continued. He was unaware that V was in the hospital. V called the nurse's station and was given to Jim's nurse, who was quite short with V (or at least it seemed that way in V's anesthesia-fogged state). The nurse said that Jim's labs were completely normal and that he was not at all confused. She suggested that V should call Jim for reassurance that he was fine and not confused; V told the nurse that had just been done with a different outcome; and.....boy the whole thing went downhill from there.

This morning, V called Jim from the hospital but he didn't want to talk to her because he was eating breakfast. When V got home, there was a message on the phone from Jim saying that this was "unsatisfactory" and that he wanted to know where V was and why she was not answering the phone. V. needs to get this straightened out, but not today. Today, she's popping Percocet on top of Ibuprofen and Acetominophine and hoping to get some cat-snuggly sleep.

Jim's Settled/V's Day

Yesterday, we got Jim out of the hospital and into Shipley Manor Health Center, a medicare approved skilled nursing facility (SNF) to keep him safe, healthy, and rehabbed while V goes through her surgery. At the hospital occupational therapy, Jim and Venita had practiced getting Jim into and out of a car. So when the real deal came yesterday, we did it with flying colors. V was so proud of Jim!!

Already today, V has had a phone appointment with the vet (who is an hour drive away) about being more aggressive in treating Max's CRF. V will be starting Max on fluids soon. She needs to chat some with the folks on the CRF (Chronic Renal Failure) and CRF/FD (Feline Diabetes) boards about some things the vet said. That will come much later.

In 2 hours, V has an appointment with her GYN. V is supposed to get PAP smears every 4 months because of cervical displasia. This one is long overdue, put off because of the chemo. Along with the PAP, she will get a colposcopy, which she hasn't googled, but understands to be something of a mini biopsy of the cervical tissue.

After that, V will head out to see Jim and finish the paperwork for his admission. That package had to be 2" thick. All V signed last night were authorizations for physician treatment, labs, and medicines. Also, last night they gave V a list of Jim's meds, and she had to check the insurance company's formulary to see whether they would cover those meds. For many of them, they only cover generic. Why does life have to be so difficult and confusing when folks get old and have less brain power and energy to fight the system. This really sucks, not just for us but for all older folks. We don't understand the "universal" healthcare that other countries have, but we know that healthcare coverage in the US needs alot of improvement, and some universality. We are very lucky to have excellent coverage because of Jim's military career. But we still see what happens to us and to others.

Lungs Still OK/Jim Update

V had another lung CT scan and consult with the thoracic surgeon yesterday. He said the lung mass has shrunk measurably in the past 2 weeks. Definitely, he says, not cancer of any kind. Need to repeat the CT scan in 2 months.

The interesting news is that although the CT scan clearly shows the lungs of a long-term smoker, the pulmonary function and blood gases tests for the most part show excellent function. That still doesn't explain, though, why V continues to have trouble breathing. Maybe it's just a chemo side effect thing.

Jim continues, slowly, to improve. Good chance he will go to the transitional facility today. The final diagnosis is alcohol-induced hepatitis (liver inflammation), probably with some cirrohsis thrown in. The GI doc said if the cirrohsis is mild, the liver can regenerate over time. She said that it may take 6 months for Jim to get all the way back.

Ms. Giz!!

Darlin Gizmo. Mom's kind of freaking out right now, missing Poppy (the fat man, who BTW I don't like because he gets between Mom and me), talking to herself about whether she should go out to Wawa for a pack of cigarettes, so I have a chance finally to get back to you.

Ms. Giz, you are Greta Garbo. I am Audrey Hepburn. I am petite, oui, and I also am often silent. I usually let my body do the talking. Sure, there are times I whine at Mom to let me into the dry food room, or chit chat with Poppy, who does talk back to me. But I don't think I can "vocalize displeasure." I communicate mostly with my butt and tail, telling my people how pretty I am and that they can come pet me now. I don't talk, with voice or body, to the boys.

We may just be too different in how we go about these thing, dearest Giz. Can you think in Ms. Hepburn terms and come back with some new ideas? I thought I had Lesson 1 down, but last night grumpy Max ran me off the bed. (Asshole.)

Love you, darlin Giz.

Lily Belle

I Feel So Sad Right Now (by V)

Could it be because Jim's on his ~9th day in the hospital for liver failure and when the DRs tonight told him he was not medically stable enough to go to a transitional facility, he started tearing up? (He tried to explain to the DRs that he would get rehab there, and he would be able to sit outside there. God, that broke my heart.)

Could it be because my DRs are transitioning me from Paxil to Effexor and I'm either still in the "not quite there yet" phase, or the Effexor doesn't work for me as well as the Paxil did?

Could it be because I have another CT scan and visit with the thoracic surgeon tomorrow to follow up on possible lung cancer, and I'm scared that the surgeon may change his mind that the spot in my lung isn't cancer?

Could it be because if the thoracic surgeon doesn't want to biopsy my lung, I will be having the breast surgeon take my left breast off on Friday?

Could it be because my right breast expander implant seems to have failed and is deflating, and hurts to boot?

Could it be because of most or all of these things....and because Jim isn't around right now to hold me while I am so scared and hurting? (I do miss him so much.)

~~V

Status on us Both

Another attempt at being brief.

Jim's still in the hospital. His liver functions continue to get better and then have a slight setback. He is clear minded most of the time, but is very weak in his voice and body.

He is weakly progressing at physical and occupational therapy.

V spent yesterday afternoon checking out 3 nearby transitional facilities. She made her rankings and took the info back to report to Jim. In V's absence, the social worker had tried to have Jim transferred to one of the facilities (the one V ranked dead last). Jim refused to go, and in the middle of the debate the GI DR showed up and told the social worked that Jim was not medically ready for release.

By the time V returned, Jim was being given IV magnesium. V wanted to take the social worker's head off, but she was gone for the long holiday weekend.

DR did tell Jim that he might be ready for discharge Monday. The problem with that is that none of the admissions officers are in the facilities on the holiday Monday, and the one facility we want won't have a bed until Tuesday. The admission officer in that facility is going to take 2 women who are each in a semi-private room with no roommate, put them together in one room, and give Jim the resulting empty semi-private room. Have to talk the DR into a discharge delay until Tuesday.

V has a tough schedule for next week just for herself. Will have to fit Jim in as possible:

Tuesday AM, CT scan and reconsult with thoracic surgeon
Wednesday AM 8 month followup with endodontist
Thursday AM Consult with vet about Max's CRF
Thursday PM PAP smear and coloscopy
Friday late AM show up for surgery

V also is trying to get in to see Dr. Boob. There seems to be a leak in her right breast expander implant, and that implant wasn't due to be changed out until around January. We will need a resolution before V can start radiation. (One cannot expand irradiated tissue.)