My Day Off

Radiation 6 this morning.

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

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

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

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

It's Looking a Little Easier

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

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

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

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

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

Sunday

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

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

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

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

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

Radiation 5 this Monday morning.

Saturday: Venita Goes Postal!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Friday Evening

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

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

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

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

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

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

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

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

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

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

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

~~V

Friday Morning

4th radiation this morning.

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

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

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

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

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

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

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

Thursday Evening

Jim ripped my heart out tonight. He kept begging me to take him home, just for tonight, or he would be dead by morning. I was sobbing, and had to leave.

I asked the nurse about the ICU protocol about a patient's death. He said that if the nurse felt Jim would not survive, they would call me in, regardless of the ICU visiting hours.

Jim's platelet count is still virtually nonexistent--4--even though he seems to be bleeding less. The nurse said that on Wednesday the DRs sent a blood sample to an outside lab, thinking that maybe Jim has some autoimmune condition that is eating up the transfused platelets and hemoglobin.

Thursday 3PM

Today is Jim's 66th birthday. Happy birthday sweetie!!

Forgot to test and shoot Ennis this morning. Life spinning out of control. He was still pretty low at 2pm and didn't require any "big guns."

3rd radiation treatment this morning. Skin's starting to get dried out.

Then off for CT scan of belly. Spent most of the morning on my back under or in X-Ray machines.

Jim's pretty spiritless right now. He was only barely conscious during most of my visit. He now knows how sick he is and says he's tired of feeling this way. Said he wants to give up. Saw the GI DR, who came in, looked at Jim, shook his head, said that he has known these things to turn around very suddenly, listened to Jim's heart and belly, and squeezed my shoulder several times on the way out.

Jim's head MRI showed nothing acute happening. The report was not yet back on his belly MRI. When I saw the hemotologist/oncologist yesterday, he said he has no suspicions of cancer being part of the picture here.

I'll be heading back for the 4:30 to 6:30 vigil.

Damn, I'm going to miss Jim if he goes. It has taken so much time and effort on both our parts to get to the point of caring and trust that we are right now. Please, Jim, don't go.

Spent some time this afternoon on Jim's obituary. I don't want the standard data packed boring writeup. I want something that describes his soul and spirit. Who the heck cares what his parents' names were or that he has a brother living in GA? Those people are not part of the Jim that I have known for 18 years.

The hospice guy yesterday was very nice. It's just so hard to get my head into the place it needs to be to sign Jim up for hospice.

Wednesday afternoon, 2:45

Jim is about the same. He's getting whole blood now too because his hemoglobin is down. Really disoriented. At one point he thought he was on a bus.

Talked to Dr. Kahn about hospice. He suggested holding off until Monday. Said that if Jim's blood reaction is to the meds, they would expect to see improvement in his platelets by Friday or Saturday.

Another DR in the ICU asked me whether I had called hospice. (Apparently they call the ICU for access to Jim and his records.) Yep, I said, even though at that point I was headed out to cancel them until after the weekend. The DR said there was nothing wrong with getting an evaluation and talking to them, just that I should not sign anything to "admit" Jim to hospice. So they are still on to come here at 3pm.

Jim's scheduled for abdominal and head MRIs tonight, if they can get an IV line into one of his arms. While I was there 2 ICU nurses tried for 30 minutes with no luck. They called for an IV nurse. The head MRI is to see whether there is bleeding into the brain that is causing his confusion.

His belly is continuing to swell, as are his legs. His respirations continue to be fast and shallow because of the pressure on his lungs.

Jim did tell me he loves me.

Radiation room door is back on track. I get "burned" at 4:15 and then back to the ICU.

Wednesday morning, 9AM

Radiation cancelled. Door not working again.

Made an appointment to talk with Hospice of Delaware at 3 this afternoon.

Called ICU. Jim's condition is unchanged.

Ennis is back regularly to needing 2 shots of insulin a day.

I need to buy cat food and drop a stool sample off at the lab on my way into the hospital.

ICU Revisited

Jim's internist left a message this morning that Jim had been transferred to ICU and his condition was "fairly serious." When I called the number the DR left, I got a nurse coordinator who told me to come to the hospital ASAP, even though it was 1.5 hours until ICU visiting hours.

I got there and of course, the ICU people wouldn't let me in. I kept ringing the buzzer and asking to see Jim. A tech came out to find me in tears, and said she would talk to the nurse. The nurse said that Jim had just gotten there and they were trying to get him settled. The internist was in ICU, and he came out to talk to me in a private place. He held my hand as we walked down the hall to the ICU waiting room. During our walk I asked him, Dr. Kahn, whether Jim was going to survive this. He said that his gut tells him no.

Dr. Kahn explained the situation. The platelet count has fallen so low as to be almost nonexistent--5 (normal is 140-415). Jim is bleeding constantly from his nose and mouth. He has several places on his arms and chest that are spontaneously bleeding. Dr. says he's likely having microscopic bleeding internally. He's had another platelet transfusion, but he's just bleeding it out.

As I explained before, there are at least 3 reasons for the low platelets, but the DRs are guessing it's a medication reaction, and have removed all medications that could cause this.

Jim is angry. He knows going back to ICU is a step backwards. The DRs and staff are all trying to convince him it's just to be able to keep a closer watch on him, but he's not buying it.

I asked Dr. Kahn about the possible scenario going forward. He said Jim's belly will continue to expand as he retains fluids in his peritoneum (ascites). (He also is getting leg edema.) They can't drain the belly because they can't put a needle into him because of the clotting problem. His ascites will put pressure on other belly organs, like the pancreas and gall bladder, possibly pushing them into failure. The ascites will push up against his lungs, making it difficult for him to breath. (Which is happening; his respirations are up from the high teen to the low 30s.)

He will likely develop a serious infection, maybe pneumonia or an infection in his central line. They won't be able to treat with antibiotics, because antibiotics may be causing the platelet drop, so he's not getting those now.

Jim wasn't able to have the MRI last night because they were unable to start a peripheral (in his arm) IV line (and I don't know why they couldn't use the central line). The GI DR said that getting the MRI would have been nice, but not really critical right now because if it showed a problem that required a procedure, that procedure likely could not be done with the platelets so low.

The GI DR looked disgusted with the whole process. I also asked the infectious disease DR the chances for Jim's survival. He didn't want to answer the question--one day at a time, he said. I have yet to meet the hemotologist/oncologist, but he seems to be the guy everyone is waiting for--because this is a blood problem right now.

Dr. Kahn and I had to fill out the "do not resuscitate" (DNR) order based on the living will Jim has in his chart. Certain things, like feeding tubes, are allowed. Other things, like CPR and intubation, are not.

I told Dr. Kahn I had started radiation this morning. He didn't know about my breast cancer (maybe he just thought I had a funky haircut). Finding out about my disease seemed to make him feel doubly bad that I may be losing my husband.

Updates

Jim

I didn't see Jim yesterday because I did not like being the target of his anger and frustration. I went this morning because I wanted to see what the DRs are doing.

Jim's arms and chest are bruised beyond belief. Some of the bruises are weeping and have been covered with tape. Jim is having nose bleeds and has open bleeding sores in his mouth. All of this is because his platelet count is so low--he can't clot (except of course in the veins in his calves, where we didn't want them).

I asked the nurse to read the chart since Saturday afternoon. Apparently the hematologist/oncologist had ordered an abdominal MRI to look for cancer, but Jim refused the procedure. I went to Jim, explained why the MRI is important, and the DR re-ordered the MRI. It will be later today (6 pm).

Jim is now too anxious about the MRI to do anything. He wouldn't eat lunch. He just keeps asking when the test is. He is claustrophic. Jim is a control freak, and he has no control right now. I tried to get the procedure moved up, but no luck.

Nothing more has been said about putting the Greenfield filter into his vein to catch the clots from his legs. It's likely that with his lack of clotting he would not be able to survive the procedure. One of the GI specialists had wanted an upper endoscopy last week, but the GI guy today said absolutely not.

I thought Jim was in bad shape after the last hospitalization, losing 45 pounds. He is SOOOO going to decompensate on this one, with complete bedrest, and him not eating or exercising.

Jim's blood pressure is good. His temp is only slightly low. He's not as cold as he was.

The infectious disease guy said he didn't think the cause of Jim's condition was spontaneous bacterial peritonitis because the culture of the fluid taken from Jim's peritoneum showed no infection. But the GI guy said that is impossible to say because they weren't able to draw peritoneal fluid until Jim had been on IV antibiotics for 2 days.

I asked the GI guy where the low platelet count is coming from. He said they weren't really sure, but that it could be an infection in the bone marrow. Also could be reaction to the meds. Also could be just a condition of the cirrohsis. (Of course the hematology guy wasn't there to ask). I asked whether another platelet transfusion would be in order. (Jim had one on Saturday.) GI guy said Jim's platelets had come up from 10 on Sunday to 11 today, so we should wait and see. (Normal range is between ~140 to 415.)

All the DRs seem to be waiting for a "pronouncement" from the hemotologist/oncologist. It seems they all think/hope it's some kind of cancer,
so that there is no hint that they did not do all they could do. And I'm not saying there's not a huge amount being done. Well, maybe someone should have called me when Jim refused the MRI, but besides that, and the dietary staff who is feeding him crap, I have no fault with what the folks there are doing.

There was a business card from the hemo/onc guy on Jim's beside table. I will call him tomorrow, to see what he has to say.

I spoke by phone on Friday to Jim's Neuropsychologist. Jim was supposed to have a followup visit tomorrow. The DR said he would pop in on Jim, and maybe chat with his hospital-based GP, without having a formal consult. He understands how Jim's current condition likely has really set back his mental condition. The DR was so nice, and also concerned about my state of physical/mental health. He also was empathetic with my blubbering.

Right now, there is no way to predict when Jim might come home, if ever. But I'm starting to be able to think about him not coming home (or taking me to Europe as he promised) without completely falling apart.

Venita

The track on the radiation treatment room door was fixed and I got my X-rays this morning. I should be able to get my first radiation tomorrow. Because of my 6-week long bout with constant diarrhea (which my GP thinks is stress over Jim), I get an abdominal CT scan on Thursday. It will be with contrast, meaning I have to drink that barium crap.

Turns out that while I get 28 treatments to my chest wall, I get only 25 to my upper lymph nodes. (The axillary basin--armpit--is included with the chest wall site.)

I am going to have to find some time to get back to physical therapy soon.

Jim Not Well

I have written 2 posts now about Jim's failing condition, but I have not posted them because they also express my anger with a few local people and how they are treating us.

I am so pleased with my FDMB group, and my neighbors, and Jim's neighbors, and Annie, and my brother and his wife, and some of our local friends. They give us incredible emotional and physical support on a daily basis. I wish more of the people we know from Claymont DE could be more helpful in that way.

Many of them only seem to want to know details of our lives so they can gossip.

Bottom line is that Jim is failing a little more every day. If you want brief details, PM me on the FDMB or email me or call me. I am not interested in continuing to share my personal pain with our local community. I was told by one local "matron" that I am not getting help because I am not humbling myself and admitting that I can't take care of us.

I'm sure I'll get over this in a few days, and come back on to update. I can be as friggin opinionated as almost anyone, but I don't try to cram it down peoples' throats.

Jim Continues to Fail, it Seems

His liver values are not improving. His platelette count is dropping precipitously. Platelettes are those blood things that allow one to clot. Jim now has basically no ability to clot.

Except that after 5 days flat on his back, Jim developed clots in his legs, as shown by an ultrasound. The normal course would be medicine to dissolve them, but that medicine would further lower his platelette count. The risk is that the clots will break loose and travel to his lungs and give him a pulmonary embolism.

He is scheduled to see a hemotologist/oncologist. That apparently is a common dual speciality. The falling platelette count is potentially indicative of a cancer.

One possible course is to install a Greenfield filter, which is an umbrella device that they insert through the groin into the inferior vena cava to "catch" blood clots that try to travel that route. It is a surgical procedure done in the imaging lab, and Jim would have to go to Christiana Hospital to have it done.

I am not visiting Jim for the next few days because I am under way too much stress. Jim has been less than welcoming to me. I am even more hurt by several of our opinionated friends who have stuck their $2 in about our situation where perhaps only 2 cents were needed. I can accept Jim's lousy attitude because he is sick; I have a much rougher time with the "friends" who counsel how I should handle my illness and Jim's illness differently (that is by "accepting" that we cannot do this alone), but who are not around for any purpose other than evaluation. We are only an occasional concern for these "friends." Sorry, but this sounds so much to me like religious people who say open you heart to faith and all things will get better. Excuse my pomposity, but get off your butts and show up in Jim's hospital room for a visit or maybe even bring over a meal when Jim is here. Do I really need to call you and ask you for a visit or meal? I have done that several times, and trust me, that makes me feel like crap. Jim is SUPPOSED to be your friend/family. I am not asking for me. I know that I have only lived in this way too-close-knit community for only 4 years, and that I have no "standing" here.

I have never waited for "a friend," (even those here) to become so "humble" that they had to ask for me to bring food or to visit. I showed up, food, magazines, friendship in hand.

What has happened to common courtesy here in Jim's home town????

Sorry, guess I'm just not humble enough for you all!!!

Some People are Disappointing, Including Jim

A couple weeks ago, when Jim was here at my home, Jim's "best friend" called me because he was concerned that Jim was not being well taken care of (read maybe "abused"). I invited him to come visit and "audit" Jim's condition whenever. He came here that same day. When I got to the hospital today, there he was, making sure Jim was OK. First time since the 2nd day Jim was in ICU. This is a man who little respect for the women in his life. I can SOOOOO add details to that if anyone is interested.

And Jim's cousin. Where is he in all of this?? Jim's closest relative. Becomes concerned about every 6 weeks?

Earlier this week a friend of Jim's, who is a woman, told me on the phone that I needed to accept that Jim was not going to get better. She's not a medical professional. I told her that I would not accept that until I got that info from a DR. She did apologize for going too far with her comment.

Yesterday, a friend tried to completely rip me apart. She knew I was in alot of pain because of Jim's condition. She told me my problem was that I couldn't accept help from people because I am not humble/have no humility. She doesn't have a clue the kinds of help I've gotten from my many friends. She only knows that I haven't gotten any help from her (but then she hasn't offered any, and I haven't "begged" for any from her). She claims that I have been screening my phone calls to not accept any calls from her.

Sorry, darling, I say now as I said to your face: I do not have caller ID, and I have dialup networking, so when my voicemail says I'm on the phone or Internet, that it INDEED where I am. But if this so makes you think that I am avoiding you, think what you must. (It sounds like a real insecurity problem.) It's not like you've been all that helpful during the past 6 months. Bottom line is I do love you and especially your very kind husband. I was hurt when you said that you didn't know what I meant when I said on the Blog that I need Jim. If a person with a spouse does not understand the "need" for a spouse, well....

And Jim hurt me today. He's been very angry since yesterday when he thought he was coming home. His anger has been focused at me, because I should have been the one to get him out.

I told him I will not see him again until Wednesday. I called the nurse to make sure no one calls me for him. I also told the nurse that I only want to hear from the DRs if there's some issue to communicate.

I'll post later about the medical issues that have been going on for both of us this week. I am just so hurt about how sick he is, and how sick I am about him. And how much people in Jim's community that we thought were friends have let us down and made us hurt.

~~V

Mammogram Humor

From a posting on the FDMB-----


"I actually kept my mammogram appointment. I was met with, "Hi! I'm Belinda!" This perky clipboard carrier smiled from ear to ear, tilted her head to one side and crooned, "All I need you to do is step into this room right hereee, strip to the waist, thennnn slip on this gown. Everything clearrrr?" I'm thinking, "Belinda, try decaf. This ain't rocket science."

Belinda skipped away to prepare the chamber of horrors. Call me crazy, but I suspect a man invented this machine. It takes a perfectly healthy cup size of 36-B to a size 38-LONG in less than 60 seconds.

Also, girls aren't made of sugar and spice and everything nice ... it's Spandex. We can be stretched, pulled and twisted over a cold 4-inch piece of square glass and still pop back into shape.

With the right side finished, Belinda flipped me (literally) to the left and said, " Hmmmm. Can you stand on your tippy toes and lean in a tad so we can get everything?" Fine, I answered. I was freezing, bruised, and out of air, so why not use the remaining circulation in my legs and neck and finish me off? My body was in a holding pattern that defied gravity (with my other boob wedged between those two 4" pieces of square glass) when we heard, then felt a zap!

Complete darkness and the power went off! "What?" I yelled. "Oh, maintenance is working. Bet they hit a snag." Belinda headed for the door. "Excuse me! You're not leaving me in this vise alone, are you?" I shouted. Belinda kept going and said, "Oh, you fussy puppy ... the door's wide open so you'll have the emergency hall lights. I'll be righttttt backkkk."

Before I could shout "NOOOO!" she disappeared. And that's exactly how Bubba and Earl, maintenance men extraordinaire, found me, half-naked and part of me dangling from the Jaws of Life and the other part smashed between glass! After ex changing polite "Hi, how's it going" type greetings, Bubba (or possibly Earl) asked, to my utter disbelief, if I knew the power was off. Trying to disguise my hysteria, I replied with as much calmness as possible. "Uh, yes, yes I did thanks." "You bet, take care" Bubba replied and waved good-bye as though I'd been standing in the line at the grocery store.

Two hours later, Belinda breezes in wearing a sheepish grin and making no attempt to suppress her amusement, she said. "Oh I am soooo sorry! The power came back on and I totally forgot about you! And silly me, I went to lunch. Are we upset?"

"And that, Your Honor, is exactly how her head ended up between the two 4-inch square pieces of glass .."

Update on Breast Cancer

Folks continue to wonder about the status of my cancer. I've been very focused here on Jim.

I continue to have chemo-induced periphral neuropathy in my finger tips, lips, tongue, toes, and bottom of my feet. No improvement in the 3 months since chemo ended. I take neurotin for the neuropathy as well as for hot flashes. It doesn't touch the tingles. The dead toes and feet are trouble because I often trip over flat surfaces. They also ache to the point of pain.

My hair is growing back. It now looks like a very short buzz cut. Seems to be its previous color of medium brown with lots of gray. On top, it's getting nappy; like I have 50 cowlicks all twisting around each other.

Leg, public, underarm, full body hair is coming back too. The returning hair on my face is babyfine (like it previously was) but quite thick and long. I may need to shave it.

The range of motion in my right arm is probably 90% of pre-surgical range. The left arm, maybe 40-50%. I need to start PT on the arms, but with Jim and trying to start radiation, I'm not sure where I would fit it in.

Scar from left mastectomy is almost healed; jusy one small scab left. One or 2 more infusions, and the implant will be as large as the one on the right. Drainage is slowing; today may be the final syringing of my armpit.

I have had nothing but diarrhea for 5 weeks. Dr. Cutter had given me a scrip for something to cut down the movement of the bowels, and I also take Immodium. Nothing touches it. It doesn't seem to be a side effect to the meds I am on. Dr. Cutter ordered a stool test called a C. Diff. Titer, and I finally turned in a sample yesterday. I asked for the result to also be sent to my GP, and I got an appointment with the GP for Friday. I think this constant diarrhea is dehydrating and adding to the fatigue I have from the worry over Jim. Maybe it's time to pop a Xanax.

Off to the shower. Ready to start the day!! Dr. Boob visit; a couple visits with Jim.

Take care all. Look forward to a joyful weekend!

Spontaneous Bacterial Peritonitis (SBP)

SBP is the diagnosis for what happened to shut Jim's system down on Saturday.

In the human system, bacteria naturally transmigrate out of the bowels and into the belly cavity. Most of us have no fluid in that cavity and we have a strong enough immune system to fight the relatively minor amount of bacteria.

Not Jim. He has ascites, an accumulation of fluid in his peritoneum because of his damaged liver. We try to keep it down with diruetics, but that's a fine balance (because diuretics lower blood pressure). Jim also has a weakened immune system. The transmigrating bacteria stayed in his belly fluid and cooked up a nearly fatal stew. The infection spread to his kidneys, his bladder, his blood (sepsis), and probably other places the DRs haven't cared to share with us.

Yesterday's conversation with the internal medicine specialist--

To DR: Is this a condition that is likely to recur?
From DR: Yes. Once it occurs, it likely is going to be a chronic condition.

To DR: So what does one do?
From DR: Lifetime antibiotics.

To DR: What is the standard of care?
From DR: Two weeks of antibiotics.

To DR: Two weeks in the hospital on IV antibiotics?
From DR: Not necessarily. Depending on his response, he may be moved to oral ABs.

To DR: How long in the hospital?
From DR: Let's take that one day at a time.

To DR: What are the markers for saying he's ready to leave the hospital?
From DR: Blood values and mental status.

Today's conversation with the GI specialist indicated that Jim's liver may be so damaged that it is completely dysfunctional. The DR started mentioning liver transplant. I know that's going to be a long shot given Jim's age (66 next week) and drinking status (only 2 months without alcohol). The DR did say he thought Jim was only a few days from release from the hospital. He also said he would write an order for hospital based PT/OT. Jim and I did his arm exercises today.

The infectious disease specialist ordered a CT scan for Jim. I didn't see him so I have no idea of the site of the scan or the purpose of the test. Jim may have been told, but he doesn't remember.

Jim is mentally confused. This afternoon as I was getting ready to leave, he told me he was at the airport. That is a real hoot because Jim is terrified of flying, and won't even go to airports to pick people up or drop them off.

What is so scary is that Jim's total crash happened within 2 hours. What if I had been out and about at a DRs appointment of my own or shopping? There have been times I have left him alone for 4 hours at a stretch.

I'm not a praying person, but I am about ready to get down on my knees and plead with whatever power out there watches over children and fools that s/he watch over Jim and me and help us get through our diseases and back to health. Jim promised me that I would see parts of Europe with him. I want him to be able to keep that promise.

Update on radiation: Nothing until next week at the soonest. They have to replace the door on the treatment room so that it will lock. I am "expendable" because I haven't started treatment. Others, I am guessing, are being temporarily transferred to the cancer center facility.

Thank You Auntie Deb and Gizmo

We love Liverwurst.

~~Ennis and Max.

Radiation Crash and Burn

Get to radiation clinic at 7:25 am Monday morning. Still dressed in jammies; coat over same.

Can't start treatment. DR wants repeat of the X-ray films that we did during the dry run on Friday. Get me all set up "in position" and keep me there too long again. Cramping, aching.

Techs come back in. Couldn't take X-rays. Treatment room door wouldn't lock. Come back Tuesday to try non-treatment again. I huff out, grumpy and stressed enough to spit nails.

Tuesday up at 6AM, hoping to be more awake when I get to clinic. Find a phone message from Monday night--door still broken; don't come in on Tuesday. MAYBE back Wednesday to try non-treatment again.

DR offered to delay treatment a week because I am so stressed over Jim. At this rate, it will be a week delayed. It just won't have relieved any stress.

I sometimes feel I'm working with a rinky-dink outfit.

I Am Scared

Will Jim come back to me healthy?

I saw him again Sunday afternoon, and he continued to be chipper. He ate well when they served him dinner. He's got that old-man-laying-in-the-bed-with-high-cheekbones-and-open-mouth look that scares me. His eyes light up when he sees me and he calls me the love of his life, which comforts me. I want to climb into the bed with him, but all the tubes going into his various places prevent that (and I don't know how to drop the rails on the bed).

Are there any places where hospitals understand that there is a need for physical closeness between husband and wife when one is sick? Jim and I both would feel better if I could lay next to him and hold him. When I feel better he feels better. When he feels better I feel better. It feeds on itself.

I am scared.

I've never been scared for myself with the cancer, but I am scared for Jim.

I have to get up in less than 2 hours to go to radiation. I need to go to bed to sleep.

Mid-Day Report

I saw Jim from 11-12 noon. He was remarkably chipper. They are putting anitibiotics and Dopamine (to raise his blood pressure) into him through the central line. He said the DR told him he would be in ICU for a while.

They almost gave him 4x the Lactulose he's been getting at home (the laxative that gives him the explosive bowels). Thank God the DR called me and asked what dosage he is on. Pisses me off, tho, because I sat the ER nurse down last night and went through all his meds, the dosages, and times.

I talked with my former neighbor she moved a couple weeks ago to NH) nurse Mary and she said Jim's ICU stay might be more than a week. She also cautioned that he might need another SNF facility as transition before he comes home. Shades of Shipley! I need to start checking these places out.

Thanks so much to all of you who spoke with me yesterday and today. I have been/am so very scared that Jim was/is going to die. I still don't think he's out of that woods.

Neighbor Kurt came over today to install 3 more grab bars (one each at the top of 2 stairways and one at the entrance door), and to adjust the placement of one next to Jim's bed. Thank you so much Kurt for helping us. I really hadn't planned for my home to be covered in grab bars, but they are very useful for Jim (and for me when I am mobilizing him alone).

I'll be heading back to the hospital to see Jim for the 4:30-6:30 visiting hours.

I love Jim so much. I so hope he heals.

~~V

Intensive Care Unit

Jim crashed yesterday. Blood pressure in the 65/40 range, temp of 94, shivering, shivering, stumbly, mildly incoherent. Called 911 and a paramedic unit and an ambulance showed up. 5 burly men and women. They took him to the Emergency Room at WIlmington Hospital (the one he was in before) and I followed in the car.

IV fluids, IV antibiotics, and 4 hours did nothing to raise his blood pressure. They put in a central IV line so they would have quick access for meds and blood if he started to crash further. They started him on meds to raise his pressure shortly after I left at 8pm. Jim and I agreed that I was serving no purpose there except comforting him and exhausting myself. They were waiting for an ICU bed to open up in an affiliate hospital, at which time they would transport him there by ambulance. By 1am, his systolic pressure was into the high 90s range.

The diagnosis when I left him last night was sepsis. The ER DR thinks it's likely an infection in his liver, but they were not able to get a sample of the accumulated fluid in his belly to culture. The hospital takes sepsis very seriously, and that and the central line, which is prone to infection, are the reasons for ICU. ICU has severely restricted visiting hours, even for spouses, so I won't be able to see Jim until 11am. In a way this is a blessing, so I don't wear myself out with more days of bedside vigil.

Radiation starts tomorrow, and I need to conserve strength.

Everyday is a Challenge

Jim continues to feel weak, washed out, lethargic. Also very cold, even though I have the heat in the dungeon into the 80s and he is dressed in layers, including my chemo cap. RN visit today showed his blood pressure (BP), after 4 readings, in the 68/40 range. She called his GP, and we are reducing his diuretic further. It is a balancing act between trying to help his body shed excess fluids (which with liver failure build up in his belly and legs) and dehydration and low BP.

I left Jim alone for 4 hours today while I went to our drinking club and then to see Dr. Boob. Jim wanted me to go to the Club because there were some people he owed money to (one had bought him 4 rolls of the new North Dakota state quarter and the other was selling him a fundraising calendar). I stayed for 2 beers and a chat with friends. Then off to Dr. Boob, who told me that the golf-ball sized lump in my left armpit was not the expander implant shifting, but the accumlation of surgical fluids. CRAP!! He drained the armpit (100ccs of fluid, a little bloody at the end) and put 60ccs of saline in the implant. The DR was running behind, and I didn't get into see him until an hour after my appointment time.

Came home to Jim having had a poopy incontinence problem. Because of his weakness, there was nothing he could do but sit and wait for me to get home. He had been waiting 1.5 hours. I felt horrible. He was very good; didn't complain about having been abandoned, as he rightfully could have.

I have a "dry run" for radiation tomorrow. They just want to make sure the form and the measurements and the tattoo all work. Real radiation starts Monday. 7:30 AM. That was all they had available. As others "graduate" from radiation, I should be able to pull a better slot, like 9AM.

Supposed to be a freeze tomight. I don't have the energy to bring the plants in, so I draped them with old sheets. I will work on getting them in over the next few days.

Cats are doing well. I am giving Max an appetite stimulant, Cypro, and he is constantly begging for food. Looks like he is putting some weight on; I'll weigh him tomorrow.

Ennis's BG level was way too high this morning. He's been getting SID shots, and had a shot last night, but this morning he was around 250. EEK! I gave him 4U, when he usually gets 3U. At +5, he was in the 50s. SHIT!! I probably have set him up in a huge rebound cycle.

I'm sure there are other things I wanted to say, but I can't recall. Thanks to all for caring!!

Neuropsychologist

Yesterday, Jim had a 2.5 hour visit with a neuropsychologist for his confusion. The man is a Ph.D., not an MD.

Dr. King had not received a report on Jim's latest CT scan, but I told him that it was consistent with the April CT scan, which he did have access to.

Dr. King said that although Jim's brain is shrunken and has infarctions more than would be "average" for a person his age--likely because of alcohol abuse--there is no imaging or clinical evidence that Jim has suffered brain damage or has any kind of dementia from alcohol or a stroke. There is a remote possibility that Jim could have some sort of increased pressure in his brain that can only be tested through a spinal tap, but doing that diagnostic would be inappropriate at this point--given the unlikeliness of the condition.

The DR. definitely saw that Jim's problem is one of random, situational confusion, not one of memory loss. Although slow to pull up the memory, Jim knew what he had for dinner the previous night. The DR said that someone with alcohol dementia wouldn't have that memory, and would make something up.

During the first hour of the visit, while I was there, Jim did admit some instances of confusion, like not being able to remember Ennis the cat's name. He also told the DR that he retired in 1955 (instead of the 1995 it was). Jim stuck to that date even though challenged by me and by the DR. He finally started to show that maybe, perhaps, he had made a mistake.

The DR then sent me out so he could do a battery of tests on Jim. Jim told me they were things like "close your eyes and touch your nose with your left hand index finger" and "remember these 5 things." The DR cut the testing short because Jim got very tired.

The DR's opinion at this point is that Jim's mental confusion is associated with his liver failure. As the insult to the liver becomes more remote, and as the liver heals, the mental confusion also should improve. There is no reason to believe at this point that Jim can't get back to the mental capacity he had before the liver failure, but there is a need to be patient. Recovery from a medical condition as severe as Jim has could take many, many months.

We thought that was good news. Knowing that there likely is an end to this tunnel, we can travel it with much more patience than we might be able to if we had been told this was permanent. In fact, when Jim gets confused/stuck in a dream state as he did last night talking about how some guy on his construction crew was being a jerk, I can just go along with him and ask questions about the situation, rather than become involved in trying to convince his that what he is experiencing is not reality.

The neuropsychologist will see Jim again in 2 weeks to evaluate his progress.

Thank you al for your concern about Jim and me.

Late Night Ramblings

With the left side drain out and a little "filler," the 2 sides are starting to feel symmetrical again. The problem is that these expander implants make me feel like I'm wearing a steel bra. Tight, unflexible.

Jim's GP asked me to explain when I told him that Jim was inappetant. He had never heard that as a medical word before. I googled it tonight, and all the hits I got used the word in the context of animal. Is this a veterinary word?

I hate myself when I yell at Jim for failing to follow instructions. I did it again at 3AM when Jim got on his walker and started cruising the room because he was restless (and stumbling over electrical wires and other stuff). I yelled at him because I don't want to be awake every 20-30 minutes during the night, and that's what was happening tonight.

Jim's GP (who used to be my GP) gave me flu and pneumonia vaccines today. He asked Jim whether he wanted a flu shot, Jim said no, but I said may I have his shot? I'm running a tiny fever because of the vaccinations, but that will be short-lived, I hope.

The radiation oncologist said that the final reconstruction on the right side (which is the side to be radiated) would likely have an unfavorable cosmetic outcome. Today I asked Dr. Boob about that comment. Dr. Boob said that the radiation causes scar tissue below the surface of the skin, and that the tissue structure around the final implant will be inflexible and won't have the free wheeling feeling that the permanent implant on the left side will have (because it is not being radiated). Jim and I said--OK. We're looking for a cancer-free 54 YO body, not a perfect, enhanced 20+ YO one. We don't believe forgoing the radiation is in our best interest.

Jim and I are calling what is happening to my chest "non-boobs." For example, "how does your right non-boob feel today."

I cried when I was going through the CT Correlation as a precursor to radiation. I had to lay on this "mold," which will put me in the same position for all 28 radiation treatments. I had to hold my right arm over my head for ~20 minutes while they did the CT scan. I was crying by the time I came out--spasms in my right shoulder and the fingers on my right hand were going cold (they are numb anyway from the chemo). The axillary (armpit) area in both my sides are "corded," meaning that the surgery resulted in a shortening of the tendon that leads down to my elbow. I couldn't even start to get my left arm above my head (I haven't started range-of-motion PT on that side yet). The technicians wouldn't let me move as they tattoed me for alignment. The tattoing really hurt; apparently I was bleeding at the 3 sites they were tattoing so they kept jabbing that needle into me. The radiation oncologist came into the room to try to calm me down. I have a diminished pain threshold because of the chemo treatments.

The purpose of the tattoo is to provide the technicians points of reference for when I lay in my mold for radiation. There are three tiny permanent blue marks on my body: left and right sides and the front.

Max continues to lose weight with the chronic renal failure. I haven't weighed him since a couple weeks back, but he is started to appear to be a wisp of the cat he once was. Littermate Ennis is 17 lbs. Max is under 12 lbs. They used to be the same weight. I am scared to pet Max and feel the boniness he is becoming. It breaks my heart that this is a terminal consition and there is nothing I can do to reverse it, although there are things I can do to slow it down. Please Julie and Robin; anything you can suggest. Max hates the Sub-Q fluids. I may have to try a kitty burrito to get something more than 20ccs into him.

Bailey laid absolutely still for his fluids. Maxwell is an antsy one.

I cringe thinking about getting Jim out of the family room and into the car today for his neuropsychologist appt and back. He's so heavy and I'm so weak.

I spoke with Deb (of w/ Gizmo/Cujo) this weekend. She is such a loving and lovely person; we share a connection through living in Leavenworth KS and being the same age. Dearest, dearest Deb; please do take care of yourself and let me know if there is anything I can do. Jim asks about you daily, although he calls you Sue.

I am so happy that Alice's left boob scare seems to be turning out to be a benign lump/cyst. Alice, I would not wish a BC journey on anyone. But it indeed upsetting that 1 in 8 American women get it.

I'm getting no work done, and I need to finish a book I was working on when I was DX with breast cancer.

I've been having diarrhea for 2+ weeks. It doesn't make sense. Chemo is over. Immodium and Percocet are not touching it. Dr. Cutter ordered a test on a stool sample (I have not cared to collect a sample yet) and suggested a GI specialist for me to see. That GI doc didn't take my insurance, so I will go elsewhere. I really am not looking forward to a colonoscopy.

Speaking of which, Jim has a colonoscopy and endoscopy scheduled for December. Liver failure can cause bleeding in those areas. We had a friend, with alcoholic liver failure, who died because one of his arteries burst on him. (He lived alone and was found by a friend 2 days later.)

Jim has a goal of a shower next Monday morning. He has to practice steps and we need to talk to the OT about equipment for his bathroom/shower. But I think we are pretty close with what we need.

It's now 5AM. I am heading to bed. Thanks for reading my ramblings.

Set Back, with Afternoon Update

Right after the last post, meaning immediately after I hit the "post" button, Jim started feeling poorly. Diarrhea, inappetance, didn't want to exercise, sleeping most all day and hardly any at night, cancelling visits from the therapists.

I resolved to put the kabosh on that yesterday. I forced him into hourly laps around the room and kept food in front of him at all times. That, plus visits from 3 groups of friends, lifted his spirits. He sees his GP today and the neuropsychologist tomorrow. His mind seems a little clearer, and he is getting less childlike. It would be nice to get him off any meds he doesn't absolutely need. He can be so sensitive to them.

I see Dr. Boob today as a followup on the possible infection problem. Drain still isn't ready to come out. DRAT! It may just HAVE to come out.

UPDATE: Dr. Boob pulled the drain. Hurrah!! 8 inches of plastic tubing no longer living in my chest. He also added 90 ccs to the implant to try to "seal" the drainage cavity. I'll followup again with him on Thursday in case the drainage starts to accumulate in my chest and I need to be syringed.

Trudging Along

Jim and V continue to trudge along. Jim gets physically stronger everyday. There also seems to be improvement in his mental status. The change in some medicines would appear to be the cause. V got him to the imaging center for the CT scan yesterday with little problems; he's much stronger walking the stairs. We won't get the results of the scan for a while. Jim sees his GP tomorrow, but V doubts he will release them because he is not involved with this part of the situation. We might get a call from the GI specialist, or maybe the neuropsychologist will tell us next Tuesday when Jim goes in for that testing.

Some days are good, and others bad. We've been getting more good than bad. We had a horrible night the other night when V gave Jim a sleeping pill at his request. He hallucinates on those things. Never again!!

V's fine. She is on antibiotics since Monday because Dr. Boob agreed that she appeared to have symptoms of a brewing infetion. DR also did not pull the drain--too much fluid and doesn't want to keep potentially infected drainage in her body.

V sees Dr. Cutter this afternoon. She will likely get the same answer about the drain.