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Saturday, September 11, 2010

Tests, Computers and Knitting

We saw the Infectious Disease doctor Wednesday, and as I predicted, I could have just phoned it in. He had no comment on the fact that the drainage from the liver is increasing as opposed to decreasing. He was pleased that the CAT scan reports that the abcess has decreased in size from 12 cm x 9 cm to 10 cm x 8 cm. In two months time. I asked about the infiltrate in the right lung and he tells me it's probably not really an infiltrate--”radiologists often overreact”. I told him that Rich is now on insulin three times a day and he said that was good because “diabetes makes it harder for the body to fight infection.” So, maybe someone should have continued the insulin AFTER discharge?????

Bottom line... the guy is all smiles and we're going to keep on keeping on. Seriously. The time in the office plus the travel time—it was a three hour tour and I really could have used Gilligan's help.

Thursday we go to the lab. My bloodwork is fasting. Rich's is not. If I tell you that was the most fun I ever had cooking breakfast, would you believe me? But FIRST we have the MRI. (As I continue, please keep in mind that I have not eaten since the day before). Rich signs in for his MRI and they ask for his insurance and photo ID. This is annoying because this is the SAME place he had his CAT scan six days ago. I can understand having to show photo ID each time, but you can't cut a break on the insurance card you've already scanned? They still need it. REALLY? Then what the fuck did you put in the computer six days ago? Rich is going through his wallet repeatedly and I can sense his panic growing because he is German and always in control and organized, and the nice lady is smiling calmly because she can wait till the cows come home but she's making it very clear that nothing is going to happen without that card. This becomes increasingly annoying as we realize Rich does not have his insurance card because he remembers that they did not give it back to him the day before at the Infectious Disease office. I don't have a card for his insurance because I'm not covered under his plan. So I ask the nice lady if she will please call his oncologist's office and ask them to fax a copy of Rich's insurance card. She pretends not to hear me. So I say a little more firmly... “this was ordered by his oncologist . It is an MRI of the BRAIN. It IS going to happen TODAY. You just need to tell me what I have to do to ensure that.” She is still pretending not to hear me, BUT, suddenly she sees something on her computer screen and she begins rattling off Rich's insurance information in a question format so that he can verify. When she asked if we were still at the same address, it was all I could do not to bark, “No Miss Asshole, in the midst of stage four cancer and the current housing market, I decided to 'move it on up to the East Side' because I don't have quite enough shit going on in my life.”

I sat down and took out my knitting.

Before Rich can take a seat the nice lady calls him back to the window and hands him a clipboard with paperwork to fill out. It is the same paperwork that he filled out six days ago. He tells her this, and she explains that she needs him to fill it out again. I'm thinking maybe there is a shortage of oxygen on her side of the counter. A little voice in my head is complimenting my self control. I take the clipboard from him and fill out the paperwork because I can now do this in my sleep.

The facility we are at is a satellite of the hospital that Rich was in for 26 days. All of Rich's doctor's (with the exception of the Infectious Disease guy) are staff doctors of that same hospital. All of these sites use computers. Apparently, like the doctors, none of these computers talk to each other. I have a nagging desire to meet the person who sold this hospital their computer software, because I am fairly certain that person is the Anti-Christ.

So I knit and Rich has his MRI. Then we go down the hall for the blood work. Past the snack machine. They draw Rich's blood, and then they do mine. And they give us the containers for the 24 hour urine collection. Which will be ready to deliver Saturday morning. This facility is not open Saturday, so they tell me I will have to take it downtown to the main hospital lab. I ask for the lab order back since I will have to give that to the lab with the specimen, per the instruction sheet they just gave me. They tell me they need to keep it for their records, but the information will be in the computer so I can drop off the specimen without the actual paperwork. SERIOUSLY? The same computer that can't retain insurance information for six days?!??! Now I just feel like they're fucking with me. I'm too damn hungry to argue. I'll have to eat a good breakfast Saturday morning before I deliver the specimen to the lab who isn't going to accept it without the paperwork.

Part of Rich's lab order is a two hour post prandial. Which means I have to take him home, feed him lunch and then get him back to the lab for another blood draw two hours after he's eaten. Working around the lab's lunch hour of course. The lab techs emphasized the importance of the timing repeatedly. I actually manage this, which isn't easy because the man no longer has an appetite. I get him back to the lab, we walk in and they say to us “did you forget something?” I swear to god if I put a canary in that place, it would be dead in an hour.

Today we had our office visit with the surgeon. How lovely to be in the presence of sanity again. If it weren't for Dr McGee and Dr. A, I would lose the little sanity I have left. It was the exact opposite of our visit with the Infectious Disease guy. Dr A is not happy with the lack of progress, the amount of drainage from the liver, Rich's condition in general. In short, where we're at is not okay and he presents options. Not only do I not have to update him on test results, he's on top of everything and he's explaining results to us. And he's not happy with the fluid in Rich's lungs and no, it wasn't misread by the radiologist any more than they would misread a bone fracture.

Option One is to flush antibiotics directly into the liver via the drainage tube, which will require hospitalization to monitor for any problems. Option Two is for Dr A to surgically clean out the necrosis and abcess and fill the space with adipose tissue. He's going to discuss this with Dr McGee and we'll decide next week.

It was not a pleasant ride home. I'm relieved that someone is actually becoming proactive. All Rich heard is “more pain”. And... oh yeah... they may have to drain the fluid in his lung with a big needle inserted through his rib cage.

It pains me to see the despair and exhaustion that permeates his entire being. I no longer have any food or cooking skills that tempt him. He wants nothing but sleep. Finally today he confessed that his silence is the result of the tremendous guilt he feels for all he is putting me through. Like to break my heart. I am knitting.

I knit like I am knitting our lives back together. I knit like each stitch is a bead of the Rosary. I knit like I'm stitching his heart into mine where it will be always safe and ever present.

Tuesday, September 7, 2010

Turning the Corner

Rich was discharged from the hospital four weeks ago. We're waiting for some improvement. It doesn't come. I'm still full of encouragement for him, but only in terms of what is already tangible and accomplished and there is precious little of that. I haven't abandoned hope, but to speak of it seems blasphemous at this point. Trust me, there are times when even words of encouragement are inappropriate.

We are where we were at four weeks ago, the only difference being that we've been through four more weeks of shit, no signs of improvement, and diminished strength to persevere. Rich still spikes fevers daily, mainly after eating, and no one has a clue what that's about. We finally resolved the debacle of the discharge orders for the drain tube and it is now putting out over 200 cc daily. The vancomycin dose has been adjusted three times, and the anti-fungal changed from IV to PO. Frontal headaches about the brow continue to ambush without warning at least once a day. He's still up three or more times a night to pee. There's 2-4 coughing fits daily that can last as much as twenty minutes a time. Over all he's too week to accomplish more than ambulating from the bedroom downstairs to the family room. His appetite gets worse every day.

When he didn't feel noticeably better after his transfusion last week, I went and bought a glucometer kit. (and just because it says on the box Complete Kit, and shows all the components necessary on the picture---read the fine print. The test strips aren't included—everything but I discovered when I got home at 08:30 am Sat morning and had to go back to the store). I did his fasting blood sugars for three days and spot checked two post-prandials. I have never understood why he was getting blood sugars and receiving insulin three times a day in the hospital and sent him with …. NOTHING. His fasting blood sugars were between 128 and 153 over labor day weekend.

Today we saw an endocrinologist. She ordered testing four times daily with insulin three times a day. She also ordered more tests. This would be easier for her to work out if Rich's tumor was carcinoid, but it's not.

Then we saw the oncologist. He asked if Rich wants to go back into the hospital until they can get him feeling better. Rich almost laughed, but he replied with a FIRM “No thanks, they're trying to kill me.” To McGee's credit he did not jump to anyone's defense. Then he tells us he wants Rich to have an MRI of the brain because he's concerned about the headaches. Perhaps I read between the lines but McGee was watching my reaction as closely as Rich's.

Rich napped the rest of the day until visiting nurse came to change the dressing on his PIC line and draw his Vanc level. They politely informed me that I need to start doing his IV earlier in the day because the need to draw the blood within an hour of the next dose, so if I give it to him at 6 pm, that's putting them into overtime. Politely explained that my IV schedule enables to take whatever doctor or test appointment available. She explained that wasn't working for visiting nurse. I would have to graduate towards earlier time of day. I assured her that I would explain to the doctors that they would have to work around visiting nurse's schedule. In my defense, it had been a long day following a lousy weekend and just wasn't feelin' the love.

Tomorrow we have an appointment with the Infectious Disease doctor. Calm me cynical, but what's the point?. This could definitely be phoned in.

Thursday we go for lab work and an MRI of the brain. It's hard to believe that any of this is leading us any closer than we've already been. Every day I watch Rich's spirit more and more ground up. He continues to make the effort for me, but each day he is increasingly quiet and withdrawn.





But we did turn a corner today. I wasn't prepared, like driving down a busy street and suddenly you turn left as if it's the most natural thing to do, only to discover that it's the wrong street, everything is different and unfamiliar, but its a one way street and there's no turning around. Even if you can find your way back, you're never going to be the same.

It happened this morning as I was waking up. I rolled over to get closer to him, to reach for him. He jerked protectively from my touch that was too close to his PIC line, and turned his back to me to protect the drainage tube from his liver and the tender area around it. I could tell he was still asleep by his breathing, but I was instantly awake. It was as if someone had pulled back the fog and I could see clearly. In that lonely, sleepy gesture I turned a corner and realized I was no longer his wife, I'm his nurse. It wasn't that moment alone; it was that moment wakening me to what the entire day would hold. How the recent weeks and months had been re-weaving the fabric of us

I spent the whole daily feeling sad and miserable, unsure. The only thing worse was that Rich didn't notice.

Sunday, September 5, 2010

Such Dreams as These...

Thursday Rich got his transfusion. Two units. We arrived at 1 pm; we left at 6 pm. He said he felt a bit better. The next morning he woke up and told me about the amazing dream he had had.... He dreamed that he woke up during the transfusion, got up out of bed and started dancing around the bedroom. He said it was like a soft shoe routine and that I woke up and told him he shouldn't be dancing yet but he explained to me, “Lisa, the person who gave me this blood is a minstrel, now it's in me and I need to dance.” Then the music changed to “On the Street Where You Live”, and he was tap dancing and singing. He said he was very happy, and I was smiling, and then he woke up.





While still in the hospital, we gradually discovered that the early days when Richard was lucid for us, it was in fact the Dream Time for him. It wasn't until sometime after the third week, after they placed the drain tube in his liver that he began to tell us how the time had been passing for him. Following is my best effort to recount his experience as he dictated it to me over the past few weeks.

More and more he's been able to recall his journey. The other night we were watching the show “Bones”, and during a scene with the holographic skeleton reconstruction, he had a flashback. The little lights were falling in slow motion, the room was revolving... Rich said “I was there, Lisa!! That's where I was! It looked exactly like that only without the skeleton.” I couldn't tell if he was happy or sad.

He doesn't remember the MICU as we do. For him it was like the hologram in “Bones”. Lights falling like snowflakes, with random curved tubes of illuminated colors weaving through the room like liquid light. The nurses and doctors he remembers as robots, like R2-D2 and C3PO. He said they seemed friendly enough, but for some reason he was afraid of making them angry, so he tried to be very polite but said as little as possible to them.

During visiting hours he sometimes had complete conversations with people, none of which he remembered. He remembers seeing Christy and Denny because they were Pink. He remembers Wade and Caroline because they were Blue. Buddy and Michael were Purple. He remembers his brother Ed being Blue. He kept insisting that my brother Chris was one of the paramedics in the ambulance that brought him to the ER. He said I was always white.

He was very busy while in MICU. He was leery of the robots and did his best to be polite to them and avoid them. The first adventure he remembers, I was taking him to a huge, glamorous ball at a millionaire's mansion and the only way to get there was to travel in a velvet hot air balloon. Once there we had to wait in a long line on the beautiful grounds to give our donations so we could enter the ball, but Rich wanted to leave. I tried to make him the center of attention because they were all so depressed and I knew Rich would cheer them up, but he wanted to move on. Sometimes I was with him on his journey, and sometimes I was somewhere else waiting for him...

He did quite a bit of traveling. All the traveling was on an old steam engine train and Tom Cruise was the engineer. Rich's train was in competition with another train, and who ever got to the coal first would win everything—the trains, the tracks, the land and towns. Rich didn't care about the competition, he just enjoyed riding on the train and wanted to get home. When the train stopped,he would get off and visit amazing places. He found himself in a land that was incredibly green, with beautiful trees and gently rolling fields. He came upon a man standing outside a HUGE cone shaped building. When Rich inquired, the man explained that it was the world's largest house, and Rich found that strange because it was an upside down cone. He asked if he could look inside but the man said no because it was full of stuff. But if Rich would help him take everything out of the biggest house and put it into this nearby house he just finished building, then Rich could go inside. Rich said he wanted to help but he had to keep traveling, so he moved on.

Then he came to “the Land of the Hedge Hog People”. They looked like hedge hogs. They were shy but they were friendly enough. They were very busy, explaining to Rich that they bury their meat in the ground, leave it for three days and then dig it up and eat it. Rich thought this was a bad idea but he was afraid to say anything that might offend them. Then they tell him that they don't understand why so many of them are dying. He still hesitates to tell them it might be the way they store their meat. He really wants to leave this place and find his way home. But now I'm in his dream and telling him that I have made him Mayor of the Hedge Hog People so he needs to stay here and help them. He gets increasingly upset with me, he wants to go home, but he says I'm holding his wrists and won't let go. I think this must have been the period when we had to have him in restraints. He said that I explained there was land beyond the Hedge Hog People where people were desperate for coal, but the only way to get there was on the train over rickety tracks. I told him I knew he could do it so he tried. After the people had their coal they were very happy and wanted Rich to stay with them.

Sometime later he left the Hedge Hog People and his journey continued. Everything was beautiful and green again. He was in SC, waiting in a van with some guy he didn't know. They seem to be there for the same reason. They were both shaking and shivering. Then people took them out of the van and propped them both up against these poles over looking a peaceful blue lake. The people were being very kind about preparing them for their deaths, reassuring them that it would be fine and it would be for the best. Once they were dead, a core would be taken from their brains and that would entitle them to be buried in the highest honorable way. Some guy was counting down to their death. Then he pronounced them both dead. And Rich said to the other guy, “if we're dead how come I can still hear him talking?” All the people were shocked that the two men were still alive. The man who had counted down to their death shook their hands and congratulated them on being miracles. They invited them to stay with them, but Rich said he wanted to find his way home. They told him they didn't think he could do it, but he was going to try anyway.

Rich moved on to a shabby motel run by an old cowboy movie star. Rich took a room so he could rest, but he soon found that the owner was stealing money from his credit cards. Rich got angry and demanded to know where he was and what was going on. One of the robots told him he was at ______________Medical Center.

The entire journey the train tracks ran through beautiful forests that occasionally opened onto grassy fields or dense swamps, or crystal clear lakes. And all he wanted was to find his way home.

I didn't learn until he was well out of MICU and regaining his strength just how far away he'd really been. For the most part he had been able to respond appropriately—he knew who he was and had a good concept of time but he seldom knew where he was, and we had no idea he could not see anything beyond lights and shadows and colors.

Whenever he was reoriented to the room, it was like being in the hologram of “Bones”, and the floor became transparent and he could see rivers of thick, iridescent, liquid colors swirling beneath the floor. He still tells me how vivid the colors and lights were, like nothing he'd ever seen before. He's just as certain that he never saw “The White Light”, or the tunnel leading to it; never heard someone calling him from the “other side”; says he never felt the presence of celestial beings. All he knew was that he wanted to go home and no matter how tired he was he had to keep going.

It was weeks before he could relay his journey to me in the detail I've provided here. We compared notes and could sometimes correlate a particular experience he was having with something I was experiencing in my dimension.

Sometimes I look at him now and I'm not sure his magical mystery tour is complete. Not when a blood transfusion causes him to channel a minstrel.

I'm no longer concerned for his journey. Ever since I've known him he's been able to charm everyone who crosses his path, so I have no worries of hedge hog people, or eccentric conical home owners, or medical robots. I'll admit I'm a bit concerned that Tom Cruise is the conductor of his train.

I'm not afraid of his journey.

I am terrified of being left behind at the Station.