Minus Thirteen

There is nothing much in the way of news today, and that is a good thing. As of this morning, Charlie had lost thirteen pounds since entering the hospital on Friday. The doctors switched the Lasix delivery today to oral from intravenous in anticipation of returning home within the next couple of days. The wound looks better and smaller. On the negative side, a considerable amount of discomfort and inability to find a completely pain-free position continues.

Still Losing

The treatment continues to be the same, and Charlie lost a couple more pounds on the scale. As seen in the frequent blood tests, he is tolerating the Lasix well. If that continues, the doctors may increase the dosage again tomorrow. He is still uncomfortable. While the look of his legs is no longer elephantine, it would be hard to say they are anything but huge. In answer to my question this morning, the fellow said that Charlie would probably remain in the hospital until most of the fluid is gone.

Minus Seven and Counting

The more aggressive treatment is producing results. Charlie has lost seven pounds since he entered the hospital yesterday. He is not yet comfortable, but the loss is encouraging. Being in the hospital where his blood profile can be tested as often as needed, the doctors are able to give him larger doses of the diuretic Lasix. (Lasix is widely used in horse racing and is often thought to be performance enhancing, so this regimen has been the subject of a few bad family jokes.)

Another very good medical development is that the incision wound has healed to such an extent that use of the wound V.A.C. is no longer necessary or even feasible. This means the wound is well on the way to being completely healed. An additional bonus is that Charlie no longer has any external equipment to carry around with him.

Back in Room 1937

We had a regular appointment with Dr. Jarnagin this morning, and he recommended hospitalizing Charlie again for a couple of days to treat his continuing edema and other related issues more aggressively than is possible at home. He will also receive a transfusion for the anemia he has had ever since last March. Unlike previous returns to the hospital characterized as setbacks, detours or bumps in the road, this one is really to put him on a faster track to full recovery and make him more comfortable. Continuing to carry thirty plus pounds of excess fluid is very unpleasant, so Charlie is actually happy to be readmitted. By coincidence, he is in the very same room he had last time, 1937.

Hooray!

Charlie and I spent the day at MSK, and all the news was good. An ultrasound and blood work showed his kidney function is fine, so the diuretic dosage could be quadrupled to help rid his body of the thirty or so pounds of fluid he is carrying. The remaining staples were removed from the incision, it was not as painful as last time, and the infection is healing well. (They estimate that the wound V.A.C. has already saved him two to three weeks of healing time versus the old-fashioned dressing.) His abdominal cavity has dried out and the drain was removed--no more plastic bag to pin inside his clothing when he goes out. Ultrasound of his legs revealed no new blood clots. All of his blood work was favorable.

We feel pretty good tonight. It looks like Charlie has turned the corner after the infection detour. (But have I picked up Dr. Jarnagin's cliché habit?)

A Challenge

When I am working with my trainer at the gym and tell him something I am doing is hard, he always replies that the exercise is a challenge for me. Evidently, a trainer learns never to allow a characterization of "hard" on the theory that "challenge" is more positive and will keep the client motivated. Keeping this in mind, I would say that being at home with the drain and the wound V.A.C. is a challenge for Charlie and for me as the primary "caregiver." Nonetheless, Charlie seems to be making gradual progress. The interventional radiologist will evaluate where we are with the drain on Monday. Charlie definitely looks better to me, and he is now out for his third four-block walk of the day.

This afternoon, we watched some of the Saratoga horse races on television. Charlie and David are looking forward to the Giants preseason game against the Bears this evening.

The Visiting Nurse

We finally left the hospital in the early afternoon. I had arrived at 7:00 a.m. for an early departure, but a couple of snags kept us there in rather ill humor until 1:00 p.m.

Amazingly, things brightened considerably with the arrival of a nurse from the Visiting Nurse Service of New York. A few of our previous contacts with VNS had not made us especially hopeful for anything beyond a person with technical competence to use the V.A.C. wound therapy machine. But the nurse assigned to Charlie's case, Phil Leon, proved to be knowledgeable, kind, helpful and professional. He demonstrated his "can do" attitude when we found the box of supplies provided by the V.A.C. machine rental company did not include a crucial type of wound dressing. He called another client and arranged to go to his home and borrow what was needed to install the V.A.C. today and then returned to finish the job. He gave some great suggestions for getting more protein and calories into Charlie's diet, and he volunteered to arrange for in-home physical therapy to help with the back pain situation. Charlie and I both felt relieved and optimistic when he left. He is scheduled for visits three times a week, but he offered to stop by tomorrow to check on how Charlie is doing and to see if there are any problems with the V.A.C.

Apprehension

Although I am sure Charlie will enjoy being home--sleeping in his own bed, eating home-cooked food and reading in a comfortable living room--he is apprehensive about the discharge tomorrow. The visiting nurse will come only three times a week, and that is the only planned contact with a health professional until next Tuesday. His confidence in my nursing skills has not risen, and I will be in charge of the drain twice a day. (My duties actually relate more to those of a plumber than a nurse.) Despite the problems with hospital life, there is something comforting about knowing that a trained person is only a few steps away.

An aching back is an additional contributor to a less than cheery Charlie. The fellow has ordered an ultrasound, just to make sure the problem is musculoskeletal. The nurse practitioner says everyone complains about the uncomfortable beds here at the hospital, so we all suppose the back problems relate to the bed and to moving about without full use of the abdominal muscles.

With luck, I will be making a more upbeat post from home tomorrow. As I see it, we have some inconveniences, some things with which we must deal, but the health picture is much better than it was four days ago, and monumentally better than four months ago.

Preparations for Discharge

The current plan is to discharge Charlie on Wednesday. One high-tech and one low-tech treatment will be ongoing at home, and the staff here at MSK is helping us make plans to manage those. The high-tech treatment is called V.A.C. therapy. It uses a battery-operated device that applies sub-atmospheric pressure to the incision wound through a specialized wound dressing. This therapy promotes wound healing, and the dressing needs to be changed only three times a week, rather than twice a day. Charlie is lucky that his wound is amenable to this therapy. The speed of healing when using the therapy can be very dramatic.

The low-tech (or maybe just lower-tech) treatment is the drain that is continuing to remove fluid, albeit at a much reduced rate than previously, from the abdomen. The drain will be removed at the earliest next Tuesday, and it could be needed for some time beyond then.

Charlie's temperature remains normal, and the scheduled discharge is obviously an indication that he is making progress. He looks well but is very fatigued from this ordeal. So am I!

Status Quo

There is not much to report today. The fellow covering for Charlie's fellow made a brief visit before I arrived. (Dr. Jarnagin has left on vacation, but is available to the fellows by phone.) Apparently the covering fellow inquired as to how Charlie feels, which is quite well, but offered no opinions or information. The nurse says the wound looks good. The drain is still outputting. The diuretic is beginning to take effect. Charlie's appetite is good, and he is eating very well.

Under Control and Improving

The fellow just made his evening rounds, a bit before evening because his family is arriving from Ottawa, Canada, and confirmed what seems obvious from observing Charlie. He is much better. The drain is removing copious quantities of liquid from the abdomen, and the blood work is all fine. The culture of the drainage material was negative, but that was predicted, because Charlie was already on antibiotics.

Charlie's appetite is excellent, he looks well, and I am feeling very positive. The wound care team plans to send him home next week with an automated vacuum dressing that needs to be changed only every three days. We were both impressed with the size of the wound when it was fully opened up today for cleaning, but the team said it looks very good.

Clearly Improved

The drainage procedure took place yesterday afternoon under sedation and local anesthesia, so last evening Charlie was groggy and on bed rest. The nurse says there is a lot of drainage, which is what the doctors want.

This morning, Charlie is feeling better. He ate a very large breakfast, and, when walking in the hallway, was more erect and speedier than he has been. His fever is normal. Someone from the wound care specialist team will be visiting him this morning.

The doctor came on his rounds very early this morning, so I was not able to speak with him. After his evening rounds, I will make another post.

Today's activities, for Charlie, David and me, include watching the last episode of Season 2 of the Mad Men television show in preparation for the start of Season 3 tomorrow. We have a DVD player, a flat screen TV and a Bose CD player in the room.

A Setback, But The Wheels Are Not Off

As you have probably noticed, Dr. Jarnagin and his team are prone to clichés, and the latest is that Charlie's current situation is a setback, but the "wheels have not come off." We are also told that they can "fix this."

He has a lot of fluid in his abdomen (seen on a CT scan), and it is most likely infected. This afternoon an interventional radiologist will insert a drain, remove as much fluid as possible, and leave the drain in place, where it will remain for more than a week. He should start to feel a lot better pretty quickly after that. The incision will be cleaned and repacked a couple of times a day for a while.

The liver looks "great" on the CT scan, a lot larger, and most of his blood work looks good. The liver is functioning well. His protein is low, but as the infection diminishes, better appetite and nutrition should correct that.

Of course, we are concerned and disappointed, but we are told they deal with this situation often when they have done aggressive treatment procedures. Charlie is getting a lot of attention and has had multiple visits from members of the team. I have confidence in them. I will post again tomorrow, unless there is significant new information later today.

Optimistic Bias

Last night, Charlie began to have a fever, and when I changed the dressing on his incision, there were signs of infection. So we ended up back in Urgent Care. He was seen almost immediately by a surgical fellow, and, unfortunately, when staples were removed, the incision proved to be infected. More staples were removed this morning, so the incision is open and packed along almost its entire length, and Charlie is again on IV antibiotics. His fever is back to normal.

After seeing the doctor, we spent another four hours in Urgent Care while waiting for a hospital room and then for "Patient Escort" to take him to it. During the last hour (1:00 a.m. to 2:00 a.m.), Charlie, David and I strangely became a little silly, and the two of them began accusing me of optimistic bias in my blog postings and suggesting how I might spin this latest development:

• "His temperature dropped to only 99 within two hours of the incision being cleaned."

• "He was pleased to see one of his favorite nurses, Marilou, when he arrived on the nineteenth floor."

• "Only the exclusive nineteenth floor had private rooms available, and Charlie has a beautiful view of the Manhattan skyline and room decor by the Four Seasons hotel chain.

All of the above is true.

I don't want to make light of a bad situation. It is very disappointing to be back in the hospital. On the other hand, I have a feeling that everything is under control. The nurse is trying to have the wound care specialist team see Charlie later today. He looks well and was up walking the hallway before 7:00 a.m. this morning.

Still On The Job

I thought my blogging days might have ended, but Charlie finds using the computer very tiring, so I will be posting for a few more days. The recovery is definitely following an upward trend, but it is not a straight line. Some days are better than others, and there are always issues with which he must deal with the help of the medical staff. This seems to be a normal and expected part of recovering from major surgery, and the nurse practitioner answering calls this week is particularly kind and helpful.

Today is a good day. Charlie has been out four times to walk around the block, about a quarter of a mile each time. Overall, he is feeling much stronger and more comfortable than yesterday.

Near-Term Objectives

Following my first surgery on June 15, I recovered sufficiently to meet the surgeon's criteria for withstanding removal of 68 percent (a bit more than he may have anticipated) of my liver on August 3. On June 14, I weighed approximately 172 pounds, five pounds or so more than I might ideally weigh to get comfortably in most of my trousers. On August 2, I weighed 161 pounds. Since the surgery on August 3, my weight has ballooned as high as about 196 pounds and was 193 pounds this morning.

I have a couple of primary near-term objectives: to stay home and to start thinking more clearly. The medical team is working not to readmit me overnight to MSK (the team is having to deal with two or three problems). Meanwhile, I am struggling to regain enough power of concentration to hold a thought firmly in my grasp from the beginning of a sentence to its end.  

Back at Home

Charlie was discharged early this afternoon. He is feeling much better today, and the doctors are happy with his medical progress. He is definitely more comfortable than he was at this stage after the last surgery. I am again being allowed to hone my nursing skills, as the incision is still draining and needs redressing frequently.

Being out of the hospital seems to have lifted Charlie's spirits. He is even allowing himself to think that we may make it back to Saratoga toward the end of the meet.

"Just Where We Want Him To Be"

Charlie's IV came out today, and he is being switched to oral medications. Tomorrow morning, the doctors will evaluate whether he can go home later in the day, but they have indicated that they are in no hurry and will see how he feels. He seems stronger today, has a better appetite and is able to concentrate a bit more. The fellow said he is just where they want him to be at this point.

It was fun to be able to watch horse racing yesterday on ESPN. Although New York City cable has a horse racing channel, the hospital does not carry it. In fact, we cannot even see horse racing on the computer, because we use the hospital-provided wi-fi, and any website with a connection to gambling (or to pornography or social networking) has been blocked, apparently to keep the employees focused on their jobs. Yesterday's racing was especially exciting for us, because we were thrilled to see our trainer, Christophe Clement, win the Arlington Million.

Feeling Better

Charlie says he is feeling better than yesterday and a lot better than day before yesterday. He is allowed to eat anything, but he has very little appetite and has been content with a little applesauce or a banana. The fellow (MSK term for resident) came early this morning, so I did not speak to him myself, but I understand he reported that everything is coming along fine. The nurse also said he is doing well.

Charlie had a (very painful, because of the positioning) CT scan last evening in connection with Dr. Jarnagin's research study, and his liver looks as expected. He continues to have an IV connected to his mediport, which would seem to indicate that he will be in the hospital at least a couple of more days. He is sleeping a lot, and his activities have been pretty much limited to the highly recommended walking and sleeping. He did not do much reading after the last surgery either, but the amount of sleeping is much greater this time around. I believe he is not as uncomfortable as he was the last time, and that is allowing him to get more rest.

We are all looking forward to television coverage this afternoon of both golf and horse racing. We are rooting for our trainer, Christophe Clement, to win the Arlington Million with Gio Ponti and the Secretariat with Laureate Conductor. These races will be on ESPN.

Still Moving Forward

Charlie is not always comfortable, but his medical progress is continuing. Dr. Jarnagin is pleased with how he is recovering. The increased pain and discomfort relate in part to the normal, expected buildup of fluid and gas in the abdominal area. (I found it interesting that he has gained about twenty pounds since entering the hospital, while eating and drinking nothing but clear liquids until today. Obviously, he is still retaining a lot of fluid.)

David and I continue to trade off shifts from time to time at the hospital, but he has done more than his share today, allowing me to get over to the gym and have lunch at home with Pepper. In addition to David's help at the hospital, I derive great comfort from having him with me during this stressful time.

Spirits Lifted

Charlie was started on antibiotics this morning to combat cellulitis around the incision, and he became quite discouraged. As he increased his usage of the patient-controlled pain medication, he became groggy, and to David and me, he did not seem as good as yesterday.

But Dr. Jarnagin and his full team were just here, and Charlie's spirits have improved tremendously with the news that his liver function is returning to normal, the suggestion that he needs to remember how far he has come, and the characterization of the cellulitis as hardly a "self-respecting infection." So, back to the hallway for more laps!

Looking Well

Charlie continues to look and feel well this morning. He is experiencing much less pain than he did with the last surgery. As a result, he is using his morphine drip button less often, which makes his mind clearer and his ability to enjoy the newspapers and his e-mail greater.

Not surprisingly, Charlie's liver function is not yet normal, but the doctors say that situation is expected and should resolve in a few days. They are not concerned. Dr. Jarnagin's nurse practitioner told Charlie this morning that, in her experience, patients often have a decline in energy on the third day, and he should anticipate that possibility and not be discouraged.

At this moment, Charlie is walking the hallway with the respiratory nurse. (He did ten laps, .71 miles, yesterday.) As with all surgeries, there is a lot of focus on keeping his lungs clear, so his diligence with the walking and spirometer is important.

Afternoon Report

A few months ago, I was advised that there are a lot of "curves in the road" with cancer, and it is best not to take any of them too fast--not to get too high on the good days or when there's good news, and not to get too down when the news is bad. Today has been such a good day that I am having to try to remember not to get too elated.

Charlie looks, feels and acts better than he did at this stage after the first surgery. We are guessing that the shingles he got right after the last surgery, which were only diagnosed after-the-fact when a rash appeared, took more of a toll than we realized. It seems easier to manage the pain this time, and he is able to walk with a much more erect posture.

When Vivian, the physical therapist with whom Charlie had great rapport during the last stay, saw he was in the hospital again and due for therapy, she immediately signed up for his case. She has presented a new challenge, although I could see she was a bit alarmed at the level of enthusiasm from her patient. This afternoon she timed him with a stopwatch to see how many hall laps he could do in six minutes. Two and one-quarter laps is now the six minute benchmark, and, in addition to working toward maximum mileage, he also has a speed goal.

One member of Dr. Jarnagin's team was here this afternoon, but we are expecting the whole team this evening. I hope they will confirm medically what I am observing: that Charlie is recovering remarkably well.

First Morning Update

Charlie was moved from the recovery room to room 1629 this morning at 9:00 a.m. Because the level of nursing care in recovery is more intense than on the floor, he was kept there for the full night until all lab reports were good. He is comfortable (he just rated his pain for a nurse at "1" on a scale of 1 to 10), and David is reading him various news reports on horse racing and New York Giants football. He will be getting up to walk within the next hour. He is concerned that the back spasms he experienced in the last two weeks will interfere with his setting new distance records doing laps in the hallway, but the staff is certain they will be able to control the spasms should they be a problem. All in all, he is doing very well.

Favorable Signs

David and I had a short visit in the recovery room with a very groggy Charlie, but there were signs he was still himself:

• David told him that there are reports from New York Giants training camp that Eli Manning is throwing flutter balls, and he gave an exasperated sigh--one of his favorite contrarian theories being that the Giants would be much better with a different quarterback.
• He immediately asked for his glaucoma drops and supervised the nurse's administration of them.
• And, of course, he smiled with pleasure on hearing Dr. Jarnagin's report on the surgery.

We are home now and will go back for another ten minute visit in the recovery room about 8:00 p.m. The nurse told us that it takes longer after liver resection surgery than after other surgeries of comparable length for the anesthesia to wear off because of the role of the liver in metabolic functions.

Once Again, No Surprises

Charlie is in recovery, and Dr. Jarnagin reported, as he did after the last surgery, that there were no surprises--no cancer in other parts of his abdomen, the left liver lobe looked as expected following the resection of seven weeks ago, and the removal of the right lobe went as planned. He will remain in recovery overnight--until perhaps 5:00 a.m. tomorrow morning--as is standard with this type of operation. David and I will see him for a five or ten minute visit in another hour. Meanwhile, we are going to get some lunch.

Roseanne's Report

Roseanne, the Patient Liaison Representative, just made her rounds of the lobby and reported that Charlie is tolerating the surgery well and that the surgeons are now at the stage of "clamping off the arteries and blood vessels". She said it will probably be another hour, but that she doubted that she would see us on her 3:00 p.m. rounds.

Surgery Underway

While waiting in the lobby, David and I just received our first report from a woman whose job is to report every two hours to the families waiting for patients in surgery. What we learned was only that the procedure got underway at 9:50 am. Dr. Jarnagin previously told me that the surgery will take about three to four hours.

Four Days of Racing at Saratoga

Although I lost a modest amount of money on the races, and there was considerable rainfall until today, attending the first four days of racing at Saratoga was a tonic for me-- appropriately enough, as Saratoga Springs was a spa long before the racing began in 1863. There were some good races all four days, with the outstanding card today featuring the Grade I Diana on the turf for fillies and mares and the Grade II Jim Dandy for three-year-olds being prepped for the "midsummer Derby," the Grade I Travers, four weeks from now. 

In recent years, the town of Saratoga Springs has become more prosperous and gentrified, in the midst of the chronic economic depression of upstate New York.  Horse owners have restored Victorian mansions; developers have constructed, and are still constructing, attractive condominiums (I do not know if they are finding buyers); chain stores have mixed in with the mom-and-pop shops on Broadway; and, although the  proprietors of Saratoga County's best restaurant, Chez Sophie, are closing it and moving to France, there are more good restaurants in and around town than ever. 

In spite of all the changes, Saratoga Springs retains its magic. The town not only has the natural advantage of its springs, but also a setting amidst lakes and rolling farmland. The perennial success of the race meet defies all logic, particularly in the context of the accelerating decline of the sport of thoroughbred racing. Saratoga Springs is located far from major metropolitan areas; the clubhouse and stabling facilities are antiquated; there is a severe shortage of hotel and motel rooms, parking, and seating; the horsemen have to pay inflated rents for housing; and on the days when it isn't raining, it is often hot and humid. Like most horse owners and fans of racing, there is no place I would rather be from late July through Labor Day.

With the exception of  some horsemen, particularly Californians, who go to Del Mar,  most of the leading figures in American racing come to Saratoga for at least part of the six-week meet. Days on the racetrack start before dawn, and Saratoga's social life, at all levels, is non-stop during those six weeks. Daily life offers summertime small-town charms, such as the farmers' market. For thoroughbred horse-industry professionals and insiders, the focus of activity, including conferences and yearling sales, continually shifts throughout the meet: during a given week, one might find the steeplechase crowd in town, or the Kentucky breeders and yearling consigners, or the coach-horse people. There are families of owners, breeders, and trainers that have been stalwarts of racing and come to Saratoga for decades. There are new owners who have made a lot of money in the latest hot area of the economy, most of whom disappear from racing and Saratoga in two or three years, a few of whom endure to become part of the fabric of the industry.

While I would love to get back to Saratoga before Labor Day, I cannot set such an objective. I simply have to follow the cliche of taking each day as it comes. Following my surgery on June 15, it was predictable that I would be weakened and lose weight, but it was not predictable that I would develop shingles, an infection of the incision, a blood clot, and muscle spasms of the lower back. In addition to the pain killers, the various drugs that were administered to me for these complications also robbed me of energy and clarity of thinking-- as reflected in the paucity of my blogging since the surgery. (After I got off the last of these drugs two days ago, other than the blood thinner with which I will have to continue injecting myself for at least six months, I was relieved to find that my handicapping of the races improved markedly yesterday and today.) 

To deny that I am facing this coming surgery with trepidation would be transparent bravado. With my memory of the first surgery so fresh, I have no illusions about the suffering that is in store for me, even if all goes well. Debilitated not only by lingering effects of the four complications that developed after the first surgery, but also by loss of weight, muscle mass, and stamina, I go into this surgery with much less strength in reserve. But the surgeon seems to think that I am doing relatively well and that I am capable of staying on an ambitious schedule. Apparently, some patients have to wait months between the two surgeries. I keep reminding myself that for the first two months after my diagnosis, I was told adamantly that surgery was not an option for me and that my disease was incurable. 

Having undergone these two surgeries, I will have much better odds of surviving for a few more Saratoga race meets, and even some chance of being cured. I approach Monday morning's surgery keenly aware of how lucky I am to be going into it with strong support from family and friends. Susan plans to communicate with you by posting on this blog after she returns home from the hospital.