May 30, 2008 - June 10, 2008

June 10 - Continued pain, increased nausea, no answers yet

Today the infectious disease doctor told Karri he had reviewed the CAT scan they took last Thursday night when she was admitted and that he found quite a bit of inflammation all along the deep tissue in the open draining areas, particularly those that go quite deep. He confirmed his previous opinion that she didn’t get a long enough course of antibiotics last time in the hospital. After another 10 days of IV antibiotics, he says that her surgeon will need to re-culture these deep openings for infection and decide if oral pills are a necessary follow up. In general he is satisfied with the way the infection is responding – fever continues to be down and white blood cell count is back to normal. Incision area does not look inflamed along the surface.

The internal medicine doctor from the hospital next visited Karri. He does not recommend that she go home while she is taking the IV antibiotics for the next 10 days. Perhaps the doctor who will be making rounds for the next five days will evaluate it differently but he thinks she is not well enough to go home at this point. He is concerned that there may be too much variability of care with the home nurses for her condition at this point.

The two most critical things that have to happen for her to begin chemo as scheduled are:

1) Wound healing (clearing up infection) and 2) Good nutrition – and she isn’t getting enough. She is only getting about 1000 calories and she needs at least 2000 to be able to tolerate chemo. They will reluctantly begin supplementing with IV nutrients (TPN) because she needs to get stronger before going home. She is doing a great job at trying to eat and she should continue to get as much food nutrition as she can – this is just a boost until she is strong enough to get all she needs on her own.

The doctors have explained that the cancer cells remaining in Karri's body continue to put the fluid that is collecting in her abdomen. They have twice drained it off since she came into the hospital. The first time they collected a ½ gallon, and the second time half that much. The good news is that it isn't infected. However, the massive quantities of fluid she has been retaining are probably contributing both to the choking reflex she often has when eating or taking her meds orally as well as to her nausea because all of her internal organs (stomach, intestines etc.) are being squeezed out. The cancer cells will continue to produce fluid until chemo is started. She will begin to receive the TPN IV nutrition around the clock beginning at 8pm this evening.

Karri DOES NOT WANT TO STAY 10 MORE DAYS. She wants to come home! She is hoping that she can talk Dr. Sherman into supporting her in going home sooner. In the afternoon while waiting for him to come she was alert enough to eat some cottage cheese and fruit and work on a crossword puzzle with Myrth. Around 5:30 pm, however, she lost some of her lunch, as she tends to do at least once a day.

After that, her oncologist Dr. Sherman visited and asked Karri what are her major concerns. She said that she was most concerned with the increasing back pain and the possibility of having to stay in the hospital 10 more days.

His responses:

1) The pain we will handle with increasing medication and dosage. We don’t want to see you in pain. And we want to handle it as it rises, we don’t want it to get out of control. I’ll cut the necessary orders.

2) You have skilled nursing needs. You can’t get that at home right now. Home is not the goal. The goal is making you better – well enough that you don’t have to come back to the hospital. What does that look like? Nutritionally it means you have to be eating, drinking and having bowel movements like a normal person in order to tolerate chemo. We need to address the nausea and vomiting. We are going to try to do this with supplemental nutrition. In terms of antibiotics and your infection, you would need to have your order changed to accommodate a once a day home IV nurse in order to be able to come home, and I’m not sure if that is possible. Right now you are on a three times a day IV drip and that can’t be done at home.

He then went off to a consult with the other doctors to see if it was feasible to get Karri home sooner or not. Shortly after he left, Karri’s pain began to rise alarmingly as a result, she thought of the fluid drainage procedure the day before. It was much worse than it had been all day when she has been saying it was at a 4/5 level. Now it was an 8/9 but the doctor hadn’t cut the orders for more pain med before he headed down to the meeting. Karri endured excruciating pain for 30 minutes (sitting/pacing/trying to focus and meditate/deep breathing) while Kim, Kim and Jerry watched helplessly and the nurses paged all the doctors. Finally Dr. Sherman responded with a four fold increase in her pain med and 40 minutes after it began, she got some relief and conked out. The newest development is that Karri’s blood sugar is up and it needs to be regulated with insulin in order to start the supplemental nutrition. It will be checked every six hours for the next few days and she will receive regular insulin shots in the arm. Before Dr. Sherman left he ordered a CAT scan to see why the pain is so bad. It shouldn’t be that bad simply as a result of the fluid draining procedure. Jerry went down with her and then saw her safely off to sleep before heading home for the night. We hope tomorrow for results that shed some light and provide Karri with the opportunity for some relief.

While Karri was waiting for the CAT scan, Dr. Edraki, her surgeon paid her and Jerry a visit and expressed concern at Karri’s condition, particularly at her swollen and distended abdomen. He hopes that the CAT scan will not reveal anything that requires additional surgery but he fears that it may. We hope that will not prove to be the case as we cannot imagine how Karri can put up with that at this point.

June 9

The potential discharge plan didn’t work. Karri had a very tough night without the meds and threw up this morning. They recognize that she can’t be taken off the meds yet – and they aren’t comfortable releasing her from the hospital until they figure out how to best control the pain, which is essential to fighting the infection and to the continued healing of the wound. On the bright side, the wound care nurses today said the wounds were looking great – no redness or visible signs of infection. Also, Karri is feeling less nausea and seems able to eat more. And the doctors all seem to be working together to help address the entire complex range of issues she must get past in order to get healthy enough to begin her course of chemo, hopefully within the next couple of weeks. Her oncologist says he thinks that she’ll be in good enough shape to look ahead to chemo in another 10 days or so. Meanwhile they drained more fluid from her abdomen today with another LARGE needle. Ouch! Although we are all very sad that Karri couldn’t be released to be at Jordan’s graduation, she clearly needed to remain in the hospital and get stabilized. Kim and Kim stayed with her at the hospital during graduation and watched it with her live on Concord TV. She showed great determination to stay alert and enjoy the graduation as best she could, giving a running commentary about the kids who spoke and performed. We are all raised a huge cheer for Jordan as he crossed the stage, as well as for his cousin Kenny. After being up in a chair for the two hour program, Karri was exhausted and happily took her meds and went off to sleep.

June 8 - An old/new infection

Today the doctors told Karri they had isolated the infection. The fluid they collected from her abdomen is not growing bacteria however it is causing discomfort and a distended abdomen. The cultures they took from the wound sites do show infection, particularly the two deep ones that are continuing to drain a great deal. They are changing antibiotics now that they know exactly what the infection is, although the antibiotics they are giving her at least controlling the fever. They want to give her a longer course of treatment as this infection is related to the previous one, which they believe was never cured. Given her very compromised health condition in the past few weeks, we don’t dispute that at all. They want to knock it out this time for sure. It will be at least two weeks of IV antibiotics, although they hope not to keep Karri in the hospital the entire time. They hope to send her home with a portable IV. Karri says the nausea is under better control now so they are going to try and cut back on meds tonight to see if she has better energy and can go to Jordan’s graduation tomorrow.

June 6 - A mostly miserable month

Today it has been one month since her surgery and Karri is very unhappy about being in the hospital and very uncomfortable. The CAT scan did not reveal any pus pocket of infection in the abdomen but it did reveal a large collection of fluid that is not being drained by the wound vac. The white blood cell count from the blood tests DID reveal a probable infection, although no one was sure yet where it was. In a phone consult at 2am with Dr. Sherman, they decided to admit Karri and begin IV antibiotics. By 5am she was in a very nice room in the oncology ward and Jerry was, once again, on his way home for a few hours sleep before tackling a busy Friday.

She is also on IV for pain and nausea, as well as receiving potassium and various other fluids. The doctors have told her they will need 48 hours to culture the various samples to see where the infection is. She doesn’t want to stay in the hospital and she is particularly anxious to be discharged in time for Jordan’s high school graduation on Monday June 9^th. The doctors assure her they will try to make it happen if possible. She was visited daily throughout the weekend by Dr. Sherman, by the oncology ward doctor at the hospital and by the hospital infectious disease specialist. This is a good deal more attention than she received while in the Walnut Creek campus two weeks earlier and we are cautiously optimistic that this medical team will help her gain some ground. They have drained half a gallon of fluid from her abdomen! The problem is that they inserted a HUGE needle to do so and so that causes Karri additional pain. She is very groggy from all the meds and doses on and off both day and night. She isn’t awake long enough to eat much but when she does eat, she wants the fruit/protein smoothies that Claude and Kim concoct at home and bring to her in the hospital. A good choice given the alternative of hospital food! She is too weak from fighting the infection and from the other complications (suppressed appetite from wound recovery, production of cancer cells etc.) to care much – she just wants to feel better – she has tried so hard for so long to get on top of the nausea and pain and lethargy.

June 5 -- Back in the hospital again

Late this evening, Karri was admitted to hospital again. On the advice of the womb care nurse, we had begun to track Karri’s temperature. In the evening her temperature began to rise. At about 6:00 pm, it was 101.4 and we called Dr. Sherman’s office. He advised us to go the hospital ER at the Concord campus to ask for a CAT scan of her abdomen, which had been causing her considerable discomfort all week. Since the last hospital visit had been such a bust, Karri did not want to go back again. However, Dr. Sherman told us that he thought her infection was not resolved and that the CAT scan would help locate the infection if it was inside the abdomen. Since we had a good deal of confidence in Dr. Sherman, we encouraged Karri to take his advice. When her temperature rose to 102.4, she groaned and agreed to be admitted. Her temperature when we arrived at the hospital at 7:30 pm was 102.5. They quickly gave her 975 grams of Tylenol to begin to bring it down and gave her priority admittance. Within 30 minutes we had a bed in ER and a doctor taking her history shortly thereafter. Although we were discouraged to be looking at another hospital stay, we got a much better response time in the Concord ER, which was something to be cheerful about, unless you were Karri, who was very restless and feeling very uncomfortable. Fortunately, they were also able to use the port for some of the IV lines they put into Karri; however, for the CAT scan, they had to use veins in her arm or hand and there were a couple of false starts until they got a line in. She has been poked so much lately there just aren’t good places to poke.

June 4

Dr. Edraki opened up all four of the drainage holes and said they all looked good. He trimmed dead cells from a couple of them and cleaned the newer ones, saying the drainage looked pretty good and he didn’t think there was any infection. He told us that the most important danger to Karri’s health was not the chance of infection but any delay in the beginning of chemotherapy and advised an immediate start. He wasn’t yet ready to close any of the wounds, and in fact, opened up a fourth site that was collecting fluid under the skin. He told Karri to come in again in a week and he would see then if any of the sites were ready to close. That afternoon the case manager of the home care nurses came and dressed the wounds. She felt that the wounds needed to be cultured for infection and encouraged us to track Karri’s food intake and other vital signs daily.

June 3 - Permanent IV (Port) Placed

Despite the fact that Karri was not feeling at all well – in addition to the ongoing nausea, she had begun to suffer discomfort in the entire region of her abdomen and had trouble walking, showering, eating, sitting up for long periods -- Dr. Edraki felt that the permanent IV device (Port) should be placed on schedule. It was an exhausting day with blood work in the morning and a long wait beyond her scheduled 3:30 surgery time. We had left messages for Dr. Edraki about the fact that Karri wasn’t feeling well, but he was in surgery and apparently didn’t get them. When he finally came out to see us about 5:30, he promised to check on Karri’s condition before deciding whether or not to place the port. He came out at 7:00 pm and said the procedure had gone well and he would evaluate Karri’s overall condition in his office the next day. Sometime after 8:30 Karri was finally allowed to come out of recovery, drink some juice, and go home. We have already begun using the port and it has worked like a charm. It has been so helpful to Karri during this most recent hospitalization. We are happy that Dr. Edraki did place it on schedule.

May 30
Karri met with Dr. Sherman, the medical oncologist who would be in charge of her chemotherapy. He was extremely warm and personable and told Karri that he would be available to her around the clock (24/7). Tentative plans were made for a pre-chemo consult with his Physician’s Assistant the following week to outline the course of the chemo, which he did not want to begin until Karri was more recovered from the complications from her surgery. He told Karri that although she would lose her hair and be very exhausted as a result of chemo, she should not suffer nausea because they had some greatly improved drugs to treat it these days. Karri would be receiving chemotherapy in three week increments, but he assured her that it could be scheduled around our planned summer vacation to Hermosa Beach and the family plans to take Jordan up to BYU-Idaho at the end of the summer.