My life since metastatic osteosarcoma diagnosis October 2002. I am Audra, a 34 yr old female. My husband is Glen and our 6+ year old daughter is Angela.
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Monday, February 24, 2003
Audra continued down the bumpy road of recovery over the weekend. Audra and her girlfriend Chris planned to stay in NYC overnight last Thursday to minimize the stress related to traveling back and forth. Good thing! After treatment on Thursday, Audra was wiped out. She was battling her throat infection and related irritation related to radiation, stomach pain related to radiation and complete fatigue and lack of appetite. Come Friday morning Audra was in no shape for another radiation treatment. Her treatment was canceled but while in the hospital she was hooked up to an IV for additional hydration and nutrition.
Audra and Chris made it back to town late Friday afternoon at which time Audra retreated to bed. On Saturday we received 3 bags of IV nutrition along with 30 minutes of instructions on mixing, administration and pump usage. Audra is taking one 1500ML bag per day, administered over 12 hours each day. We're hooking them up about 7pm and by 7am the following morning they finish. Audra is still finding it difficult to get around the house due to general fatigue, she's still experiencing throat and stomach pain and she's finding it difficult to eat and talk. She still seems to have an appetite but because of the discomfort in swallowing, she doesn't really enjoy the eating experience. Its just a very difficult cycle.
Audra is not without her share of pain killers, anti-nausea medications, pain killers, appetite enhancement drugs, pain killers, antibiotics and pain killers. And for every drug she's taking, she seems to have another drug to offset a side effect of the other drug. And mail order is a joke. One of Audra's medications was filled at the local pharmacy but the third party wanted it refilled via mail order but she had to get a brand now prescription for a 3 months supply, whether she needed it for that long or not, and it was going to take 2-3 weeks. On the day she was supposed to get the drug she got a notice in the mail instead stating the drug wasn't filled because they needed to speak to the doctor. I long for the day of the fixed $5 copay regardless of brand or generic, new or refill. I guess teaching is the only profession that receives they level of benefit these days.
We're stilling hoping for one to two good days to be mixed in with all of the bad. Fingers are crossed.
Monday, February 24, 2003
Tuesday, February 18, 2003
Audra has had a rough go of it the past week and weekend. She continued to spend much of the day on the sofa, with little or no appetite, a sore throat and fatigued. Besides all of this, she was conflicted with the prospects of beginning a new chemo today, Tuesday 2/18. Last week, Angel and I convince Audra to start cutting out some medications that she believed were causing fatigue and stomach pain. After getting it down to just to new medications that she couldn't stop taking she realized her problems weren't directly linked to the medications.
When Audra went to the cancer center today for scheduled radiation treatment, she also broke the news to her doctor that she wasn't ready to start chemo. He agreed but wanted her to continue with the Gleevec pills that she had stopped. Audra also found out that she has an infection in her throat (sore throat?) that was probably the result of the radiation and chemo combination. More medications needed to treat that infection. And while she was there, how about a few bags of IV hydration since she hadn't been drinking too much.
After all of that, Audra got back from NY at 5:45pm and went to the pharmacy to get her new prescriptions, ate dinner with the family, cleaned up a bit, watched TV and talked to a few people on the phone. Just 24 hours earlier she couldn't get off the couch and today she seemed to have the energy and attitude of any healthy adult. There was not a significant physical change but plenty of mental pressure was relieved with telling the doctor that she wasn't ready for chemo -- and he agreed -- and the aches and pains she was feeling were real and largely the result of her treatments.
Keep your fingers crossed, pray if you prefer that Audra will be back on top of her game in a few days or so. Given the circumstances, all she's asking for is a few good days mixed in every once in a while with all the bad ones.
Tuesday, February 18, 2003
Wednesday, February 12, 2003
Audra’s latest round of tests confirmed that the cause of her back pain is tumor growth in various locations on her spine. While there are hot spots throughout her body, it’s her back that is the greatest concern right now and causing Audra some pain. The fear is that if any of these tumors on the spine begin compressing her spinal cord, she’ll be in serious pain and eventually become paralyzed. The doctor’s working hard to prevent this from happening.
We got the test results from the doctor on Monday, Audra was set up for radiation treatment on Tuesday and today she’s receiving her first treatment. That qualifies as ‘working hard’ in my book. The doctor mentioned the possibility of surgery on her spine but Audra isn’t very interested in surgery to take care of two spots just to have more tumors pop up somewhere else. Perhaps, just perhaps they can get this under control and she’ll consider surgery.
Right now the plan is radiation treatments at two spots on her spine for the next 12 or 14 consecutive days (in NYC, weekends and holiday excluded). In addition, the doctor is probably going to switch to another chemotherapy drug instead of oxaliplatin. Apparently he doesn’t think oxaliplatin is working. The doctor is proposing a very low dose of ifosfomide that will be continuously pumped into her. She’ll be required to go back to NYC every three days for a blood test and medication refill. Ifosfomide is the same drug that put Audra in the hospital the entire month of November back in 2000 I believe. The doctor juiced her up a bit too much ifosfomide and Audra developed an infection in her mouth that spread down her throat and into her esophagus. That was pretty scary stuff.
Audra continues to take Gleevec every day. She started at 4 pills per day and the doctor told her to get to 8 per day. Audra believes it’s the Gleevec that’s knocking her out –fatigued, loss of appetite and nausea. Although it’s not supposed to have many side effects, from what I’ve read most of the aforementioned side effects are very common. In addition, oxaliplatin has these side effects as well.
I can best summarize Audra as “fighting and hanging in.” She appears to be getting over a slight cold that a both Angela and I had. She still spends a lot of time resting, which is fine. We just got to keep pushing her to eat. The macrobiotic diet is challenging in times like this. Nothing is appetizing right now, particularly meals based around barley or brown rice.
Let the radiation begin, again. Let the ifosfomide begin, again. We’ll see what happens.
Wednesday, February 12, 2003
Friday, February 07, 2003
It was a rough week for Audra. She spent most of the week napping. Besides the side effects of the chemo, she's taking medications to help her relax and others to minimize nausea. This all adds up to a bunch of lazy, couch potato couple of days.
Audra did get out for a few hours on Thursday, 2/6. She, Angel and Angela went shopping and I met them for lunch at a local restaurant. Audra was in good, almost excellent spirits. But today, Friday, she's spent nearly the entire day on the couch.
Last weekend we were visited by Audra's cousin Vicki and husband Scott. Vicki is the cousin that's afraid to fly and afraid of child birth. I assume its okay to write that, I believe her phobias are many and most are common knowledge. If not, they are now. Audra's girlfriend Lois from Pittsburgh stopped by early in the week. That was pretty cool. I believe Lois went to NYC with Audra and Angel for a radiation appointment.
Audra canceled her doctor's appointment today due to the weather. We got about 8 inches on snow overnight. The appointment has been rescheduled for Monday. Audra got a bunch of scans (CT's and MRI's) this week so at Monday's appointment, we'll find out if all of the drugs and radiation are working.
As a side note -- Angelo and Grace bought a new car. Angel drove it to the local drug store to pick up Audra's prescription and was hit in the parking lot. We're checking the Guinness Book of World Records; the car was 1 hour old. No joke!
Chris E.: Dutch misses you.
Friday, February 07, 2003
test
Friday, February 07, 2003
Monday, February 03, 2003
Today was Audra's last radiation treatment. Those treatments are mostly painless and don't take too long. The travel back and forth to NYC takes the most time. As mentioned prior, she is double dipping on the chemotherapy, having one injected every two weeks and another is being taken orally. The chemo is really weighing on Audra's attitude, appetite and energy. I think she wants to do more but she's just unable to maintain any level of energy. The way she describes it is that it's like having the flu all day, every day.
Audra's still bothered by her shoulder and hip and other aches and pains throughout her body. Most concerning to her is the reoccurrences of some slight discomfort near the location of her last brain surgery - in her right ear. We're hoping its just the result of a little cold she's been dealing with the past week. We'll keep our fingers crossed. Later this week she'll be getting another series of MRI's and CT scans to see if things are getting better.
Monday, February 03, 2003
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