Lori's
Journal
By Lori's Husband - Jimfrozen maphack
Main Page - Journal Pages: 1 2 3 4 5 6 7 8 9 10 11frozen maphack
February 25, 2005 Lori had a CT scan, Echocardiogram, and some more blood work yesterday. The doc called last night and said he believes her fever and cough are because of some damage to her lungs from the radiation. He set her up with an appointment to see a lung specialist this morning at 8am.frozen maphack An odd thing occurred. She was talking with the tech that gave the Echocardiogram who said "we were looking at your Echocardiogram from last July and we could see the mass"...she had an Echocardiogram on March 17, 2004, at a supposed state of the art heart facility at St Vincent's Hospital which revealed nothing. The mass was attached to her heart, how did St Vincent's miss it?frozen maphack The lung doctor said her fever is being caused by either a type of infection, somewhat common in patients that get a lot of chemo and radiation around the lungs, or it may be radiation pneumonitis (sort of like radiation induced pneumonia)...she's showing all the symptoms of pneumonitis.frozen maphack He sent her over to the hospital to have a bronchioscopy done as an outpatient procedure. They were going to sedate her pretty heavily but her blood pressure was too low so they could only give her a small amount of sedative. Lori really, really hates having a tube down her throat while she's awake and not well sedated. She's been through similar procedures before but they always put her "almost" to sleep.frozen maphack She did well and the doctor was able to get a sample to do a culture with. He said if the results are positive for an infection, he'll call us this weekend to put her on a special antibiotic. If the results are negative, he will start her on Prednisone Monday as an anti-inflammatory for pneumonitis and she will be on it until the inflammation goes down and remains down, that could be as little as a couple of months or as long as a year.frozen maphack We're scheduled to see the Chemo Oncologist on Monday as well, to set up her next chemo treatment.frozen maphack I really don't know how she manages. I expect at any moment for her to tell the doctor she's not going to go through with something. She's been through so much. But she doesn't, she just says "Ok, let's go do it". She's always been an inspiration to me, but the strength she shows everyday as she battles this is amazing.frozen maphack ________________________________________________ Lori is feeling a whole lot better. The Prednisone has ended her steady fever, she is no longer constantly freezing and she seems to have more energy, though she stills tires quickly trying to do simple tasks. I once had a hard time getting her to bed at night because she didn't have the energy to get out of her recliner, now I have a hard time because she's not tired enough to go to bed. The Prednisone gives her enormous energy, too much.frozen maphack When we saw the doc the other day, he said he had discussed her problem with the lung doctor and the radiation doctor and they had come to the conclusion it could be one of three things: radiation pneumonitis, heart failure, or effects of chemotherapy. They pretty much ruled out chemo effects because it has been too long. The CT scan does show what appears to be a lot of inflammation in both lungs and in her heart. Her heart rate is normally high (caused by the tumor we believe), but recently it has been reaching 140-150 bps fairly often, but that could be from inflammation. The doctor has postponed her next chemo treatment for at least a month, mainly because one of the chemo drugs, Adriamycin, is not easy on the heart.frozen maphack The doctor has her on another anti-biotic just in case, but the symptoms went away the same day she began Prednisone (40mg a day) so we are pretty sure it is radiation pneumonitis.frozen maphack ________________________________________________frozen maphack March 08, 2005frozen maphack Lori had a bad fall this morning. She woke about 4am to go to the restroom and was disoriented and had a hard time finding the bedroom door. I woke up and saw her having problems and turned on a light and helped her find the door and get into the bathroom. When she got to into the bathroom she lost her balance and fell chin first on the floor, missing the bathtub with her head by about 3 inches. We are not sure if the medication caused her disorientation, she takes Ativan to sleep at night. But I've also heard that some medicines like Prednisone can possibly cause Vertigo. My mom has vertigo and her symptoms are similar. Lori has a cut lip where her top teeth contacted her bottom lip, her chin and jaw are sore and her knee is badly bruised.frozen maphack ________________________________________________ Lori almost fell again today, she got up from her recliner about 1pm and lost her balance, luckily she fell back into her chair.frozen maphack ________________________________________________ Lori has been doing very well the last couple of weeks. She has been trying to put on a few more pounds in anticipation of more chemo...we go back to the oncologist on the 29th of March to talk about it.frozen maphack ________________________________________________ We went to the clinic on Tuesday so Lori could get some blood work done and a CT scan. We saw the lung doctor first. He said they have confirmed her condition as radiation pneumonitis. He's going to try and start weaning Lori off of Prednisone, down to 30mg/day for two weeks then 20mg, then 10 then 5. Hopefully at that point the inflammation will be gone, if not he'll bump her Prednisone level back up.frozen maphack We went to see the oncologist next and he said that her cancer still appears to be shrinking. He has scheduled her to begin chemotherapy again this coming Monday. We have been filling prescriptions in preparation. She will not get Cisplatin this time because there has been too much nerve damage from it, and the Adriamycin and Cytoxin will be at a lower dose - equal to the amount she had on her last round when she was hospitalized.frozen maphack There are some concerns, her bone marrow was compromised from the last time and we're not sure how well it will handle more chemo. Adriamycin is known to cause "radiation recall", it can cause all of the symptoms of radiation to come back. If that happens they will have to stop this chemo protocol. There is another protocol using Taxol and Carboplatin, but these tend to cause more nerve damage.frozen maphack On the good side her blood count is higher than it has been since surgery, it's about normal now, she's really feeling good and she's putting on some pounds. She's ready to take on the next chemo round and actually feels pretty good about it. She tried Ambien to help her sleep, it didn't work well for her but I think it's because she cut out Ativan so quickly, it takes time to wean off Ativan so it doesn't cause more sleep problems.frozen maphack She's had some problems with her esophagus again and the doctor believes it may be due to a yeast infection from the Prednisone, he's prescribed her Diflucan for it.frozen maphack ________________________________________________ Lori has completed her first round of chemo without any problems. We're hoping this is a good sign because radiation recall can appear just hours after initiating chemo. She was given Cytoxin by IV on Monday and sent home with a pump full of Adriamycin which she wore for three days, it was removed this morning. We went to the clinic each day so she could get anti-nausea medicine by IV. If she tolerates this round well the doctor may offer her a pill for the nausea instead of having to come in each day, but the pills are very expensive so we may have no choice but to go in for the IV...the insurance will cover the IV more than the pills and our out of pocket prescription costs are already running about $300 per month. She gets a shot of Neulasta tomorrow, it costs an incredible $5000 per shot, fortunately the insurance will pick up the bulk...she will have had a total of 7 shots of Neulasta by the end of chemo. I really feel for those that have little or no insurance and must to find some way to cover the costs, it's hard enough for a patient to keep a positive attitude in the face of such an illness without having to worry about the financial end of it too.frozen maphack She'll have a break for two weeks, if she does well she'll then move on to round two of this regimen. In the past it's been week two of a chemo cycle that gives her problems. We've been monitoring her temperature regularly as well as her energy level and breathing...if she has any problem this time we want to catch it very early.frozen maphack ________________________________________________ Not much to update really, she begins her 2nd round of chemo for this session today, in all this is her 6th treatment. Her hair began to fall out again on Friday. It's coming out pretty fast now. We'll go today or tomorrow to the salon to have it shaved off and to find her a new hat for the summer. It's easier to shave it all off than to deal with it falling out everywhere. The salon is great as it caters to cancer patients and has a special area where they can try on wigs and hats. She's upset, but is glad that so far that's all of the effects she's had. Her mouth has become a little sore, but she's dealt with that pretty well.frozen maphack The second treatment could knock her down again, we'll be monitoring her temperature and energy level closely over the coming weeks in hopes of catching any problems early...she hopes to get transfusions as an outpatient if she needs them again; she really hates staying in the hospital.frozen maphack ________________________________________________ Not a bad week as far as chemo goes, today she had her head shaved and bought a cute purple hat. She goes back in one more day for a couple of injections (for white and red blood cells) and then she gets another 2 week break before the last treatment.frozen maphack ________________________________________________ Lori is still doing
well; she's had no effects on her bone marrow so far this time. |
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This story was originally posted on April 5, 2007. Email lorijimh at comcast.net
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