Lori's
Journal
By Lori's Husband - Jimcraker half-live 2
Main Page - Journal Pages: 1 2 3 4 5 6 7 8 9 10 11craker half-live 2
Oct. 26, 2004 It's been a rough couple of weeks, but we are on the upside now. Lori became very ill and for a short time we feared the worst.craker half-live 2 The oncologist reduced Lori's last chemo treatment because the treatments were starting to take a toll on her bone marrow. She went through the chemo week as she's done in the past, it's usually the second week that knocks her down. By the second week she had very low energy and was having problems in her mouth and throat again (deteriorating cells from chemo) and this time all the way down to her esophagus. On Thursday morning she started running a fever, I tried to talk her into to going to the clinic but she didn't want to go, she just didn't have the energy to go.craker half-live 2 I contacted her oncologist by phone, he instructed me to take her to the emergency room as quick as possible as he feared she may have neutropenic fever, a condition caused when you get a virus and don't have enough white blood cells to fight it. They took her into a private room right away and moved her to the ICU area shortly after that. They made efforts to stabilize her while they got an isolation room ready.craker half-live 2 She was admitted into St. Luke's hospital and put in an isolation room where everyone was required to wash up before seeing her and those that had been exposed to someone sick in the last two weeks were not admitted. It was a nice room and had its own ventilation system separate from the rest of the hospital. The nurses were absolutely wonderful!craker half-live 2 She was diagnosed with neutropenic fever. They did many blood cultures to try and identify the virus but were unable to pinpoint it. So they gave her massive doses of 4 different types of antibiotics. Her fever continued and her blood count wasn't returning. Her white blood cell count should be at least 7 or 8 and it was only .2 (point 2), almost non-existent. She was losing blood to her skin because her platelets were too low to clot her blood properly, and she was extremely weak and sleeping most of the time because of a low red blood cell count. She hadn't eaten for three days because of the infection in her mouth, throat and esophagus so they were giving her nutrients by IV. Amazingly, her weight never dropped below 106 lbs.craker half-live 2 On the third day her fever broke and her blood counts began to rise slightly, her color started coming back along with her appetite and energy level. By the fourth day her counts were well on their way to returning and she was feeling much better. She mentioned to a nurse how much she wanted to go home and the next thing we knew a doctor was in the room saying she could go home. It was fantastic and unexpected as the night before we were told to expect another 3 or 4 days in the hospital. It took several more days before her energy level was back close to normal, she still has some dizziness and she tires easily.craker half-live 2 We spent much of the last week at the clinic getting her blood checked and going to appointments.craker half-live 2 Yesterday, she had another CT scan to see how much the tumor had shrunk. We were of course hoping for a lot of progress. About 7pm last night the oncologist called to give us the results, unfortunately it had not shrunk as much as we had hoped for. But it did shrink some so we are still on schedule to see the cardio/thoracic surgeon on Thursday to discuss whether an operation is possible. The doctor is concerned because the CT scan showed that the tumor is still attached to her aorta, making surgery more risky and reducing the possibility of getting it all out.craker half-live 2 We are still hopeful that it can be completely resected, and if the surgeon doesn't feel it's operable we are prepared to go to Indiana and get a second opinion from the nation's leading expert in this field.craker half-live 2 We did manage to make it to a family reunion on Saturday but Lori had to wear a mask and wasn't able to hug anyone. Sunday was our 23rd wedding anniversary. We celebrated by getting out of town and having a secluded picnic down by a wildlife refuge.craker half-live 2 ________________________________________________ We went to the Mayo Transplant Center to see the surgeon today. There is good news and bad, but mostly good. craker half-live 2 He said that the tumor is small enough now to operate and has scheduled Lori for an operation on November 16th, just a little over 2 weeks away. In fact, he says it is now 1/2 to 1/3 it's original size, much better than we had thought! craker half-live 2 However, because of the way her tumor affects surrounding organs and tissue, there could be complications during surgery. He is mainly worried about two nerves called the Phrenic Nerves, they control her diaphragm. The tumor has grown completely around them, if they are stretched or damaged during surgery she may need a tracheotomy and to be permanently placed on a lung machine because she would be unable to control her diaphragm and would have no ability to breath on her own.craker half-live 2 Also, the tumor still appears to be attached to her aorta. The only two options for this are to place her on a heart/lung machine and remove and patch part of her aorta, or just leave some of the cancer and try to kill it with radiation. We are opting for the latter and have told the surgeon to leave the cancer around her Phrenic Nerves if it is too difficult to remove...she has told me many times in the past that she never wants to be permanently placed on a machine that keeps her alive.craker half-live 2 The surgeon said he will likely remove her pericardium, the sac around her heart. We are not sure if any parts of her lungs will have to be removed...she had some fluid in her lung awhile back that could have had cancer cells. The surgery is pretty major since it's the same incision procedure they do for open heart surgery. She should be in the hospital 5 to 6 days barring any major complications and will need about 1 week for each day she is in the hospital to fully recover. Then we will look at radiation and possibly more chemo.craker half-live 2 We also found out
today that she has some pneumonia. She'll have a CT scan the day before
surgery and if it hasn't cleared up by then they will have to postpone
the surgery. She is still on an antibiotic from the hospital stay and
they are hoping that will clear it up. Strange thing, last night I saw
on the news that Nexium can increase a person's risk of pneumonia by
89%. Lori is on Nexium. We mentioned that to her surgeon and oncologist
today but neither seemed concerned and told her to keep taking it. Nov. 09, 2004craker half-live 2 A few days ago we went to see the radiation oncologist to get an idea of what she might have to go through in that respect. Basically, he said that the more the surgeon can remove the less damaging the radiation will be to her. We told him about how the tumor surrounds the Phrenic nerves and is attached to her aorta and that we'd instructed the surgeon to leave it around those parts if it became dangerous to remove it. He told us that if that was the case, he would have to use extremely high amounts of radiation saying "it HAS been done before and the person survived"...as though it would be a very unusually high amount of radiation. We are now torn between a choice of very risky surgery or very risky radiation treatments. We will probably opt for the extra radiation, the surgery could put her on a lung machine permanently but we are told the likely worst case from radiation is that she would have to be put on oxygen permanently. Of course we are hoping the surgeon will be successful at removing most of the tumor and radiation won't be as bad.craker half-live 2 She is already scheduled for radiation to begin 4 weeks after surgery, I can't imagine her being healed enough by then but they can't allow much time to pass between surgery and radiation. The schedule will be a bit grueling. She'll get high doses of radiation every day for 6 or 7 weeks. Then they will look at doing more chemo.craker half-live 2 The common side effects of radiation is similar to a really bad sunburn, but on the inside of your body. The doctor suspects he'll have to radiate her heart, part of her lungs, and her esophagus. He says he thinks her heart blood vessels should handle it ok, her lungs will be a delicate procedure, and he expects her to become unable to eat about 3 weeks into radiation due to the burning effects on her esophagus...he has planned to feed her via IV if needed until she can swallow again.craker half-live 2 We go to see the surgeon again in about one week, they'll do a CT scan and some blood work to make sure she is ready for the operation and if all goes well she will have the surgery the following day, on Tuesday.craker half-live 2 We now believe the tumor has shrunk from 1/2 to possibly 1/3 its original size. We feel extremely fortunate because it was only a 50/50 chance of it shrinking any. We've come a long way in the last 3 months.craker half-live 2 ________________________________________________ Lori went to the Jaguars football game yesterday, one of her favorite things to do, and she got to see them win!craker half-live 2 Today she is going to have a CT scan to see if all is good for the surgery, if so it will be done sometime tomorrow (Tuesday) morning. She had a small amount of pneumonia in the last CT Scan, if it hasn't cleared up they will postpone the surgery...we're hoping that's not the case.craker half-live 2 ________________________________________________ We went to see the surgeon today and get a CT scan for Lori.craker half-live 2 Lori's case was the topic of a surgical meeting last night at St Luke's Hospital because of the case being so complex and such a rare form of cancer. We decided to sign waivers for the doctors to be able to take pictures and use her case for research.craker half-live 2 Her surgery is scheduled for tomorrow at noon. This is barring that the surgeons (who are heart and lung transplant surgeons) do not get a call that a donor is available for one of their patients in which case they would have to do that immediately. So, it looks as though it will likely take place tomorrow. Also, they say that it should take at least 3 hours but, of course, they don't know what they might find when they get in there.craker half-live 2 We went out to eat tonight and Lori ate lots of crab legs, her favorite thing to eat. Not knowing what was in store for her with the surgery, she was determined to enjoy this meal, as though it could be her last. She ordered one drink, her favorite, a crown royal and 7up. The waitress asked to see her ID. Lori is 41 years old, she handed the waitress her ID and the waitress said "Oh, you are the same age as me. I'm sorry but I couldn't see your hair." Lori was wearing one of her caps and said "Well, that's because I don't have any hair...I'm a cancer patient." The waitress walked away rather embarrassed and promptly brought Lori her drink.craker half-live 2 Tomorrow is the
day of her surgery. I doubt either of us will be able to sleep tonight. |
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