No Luck But Bad Luck

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

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

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

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

SIGH!

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

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

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

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

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

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

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

SIGH!!

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

Good News, Bad News

Jim’s been home one week.

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

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

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

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

A return visit to the GI in 5 weeks.

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

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

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

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

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

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

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

Part of a Note I Sent to a Friend

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

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

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

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

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

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

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

Trouble in Paradise

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

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

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

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

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

Fun With Food

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

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

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

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

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

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

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

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

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

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

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

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

Practice makes perfect.

Jim's Home! Happy Thanksgiving!!

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

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

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

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

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

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

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

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

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

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

Only 7 More Radiation Treatments

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

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

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

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

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

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

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

We Played "Go Fish" . . ..

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

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

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

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

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

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

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

Cording and PT for V

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

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

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

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

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

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

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

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

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

Only 10 more radiation treatments.

Senseless Ultrasound?

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

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

What do I know.

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

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

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

I Might Need to Rename This Blog

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

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

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

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

We are hoping Jim can come home before Thanksgiving.

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

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

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

Hummmmmm

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

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

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

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

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

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

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

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

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

Life is sucking right now.

I Want Jim Home and Jim Wants to Come Home

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

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

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

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

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

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

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

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

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

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

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

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

Overall, Not a Good Day

Radiation 12. That was good.

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

Jim had lots of therapy today. That was good.

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

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

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

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

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

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

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

Jim/Venita Update

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

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

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

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

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

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

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

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

Betty Has Been a Godsend

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

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

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

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

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

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

Jim's Doing So Well

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jim Changes Hospitals

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

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

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

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

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

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

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

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

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