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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Thursday, December 18, 2003
Anyone still paying attention???
Audra had two doctor's appointments this week. First appointment on Tuesday was back at her original neurosurgeon here in Phila to evaluate some bumps on her head. The bumps are very near previous incisions from brain surgery. One bump on top of her head was of particular concern to the surgeon. He and Audra's oncologist consulted and decided to remove the big bump and two smaller ones.
The second appointment was in NYC. Audra continues to receive Zometa every two weeks to help build healthy bones. While there her oncologist wandered by and felt the bumps on her head. He confirmed what he had stated earlier, just chip them off with a 9-iron. Tee time is January 12, 2004 at MSP Hospital in North Philadelphia.
Other than that, Audra's been doing fairly well. Until recently she was taking next to no medications. The oncologist just started her on Iressa. I believe this oral chemo is targeted for metastatic lung cancer but the oncologist will try anything. If nothing else, Audra's cancer has no idea what drug is coming next. Every other month it's a different chemo.
Thursday, December 18, 2003
Thursday, October 23, 2003
Almost two months since "our" last post.
Audra's been going for her Zometa treatments every two weeks or so. She skipped a treatment earlier this month with so many activities going on, namely Angela's birthday parties. Yes parties, plural.
Zometa is not chemo but a newer drug used to treat osteoperosis. Zometa strengthens the bones. During her recent treatment Audra told the doctor that she's experiencing additional pain in her right shoulder where they've treated with radiation one time in the past. Audra really hasn't used the right arm for a few months so I'm hoping that she's just aggravated a muscle during all of her recent activity. Nevertheless the doctor has ordered a battery of tests. These will be scheduled over the next week or so.
As many of you know Audra has not had much of her voice since her last radiation treatment. Besides that, she's seems to be battling a small cold or recurring cough. Not sure what that is. It seems to come and go.
Audra also just identified two small bumps, one on the top of back near her shoulder blade and another under her arm below the armpit. Lymph nodes we assume. She'll be calling the doctor tomorrow to see what he has to say.
Hey, other than that she's doing well. She looks great. Besides some morning fatigue, she does just about anything she wants whenever she wants. Amazing us all a little bit.
We did get a bit a bad news recently. A young man we had made contact with in Boston, battling osteosarcoma just like Audra, passed away in early October. He and Audra were very similar in age, diagnosis, locations of metastesis and treatment. His name is David Vesley. You can read some of his story here: David Vesely
That's the lastest. We'll make a post after we receive the test results.
Thursday, October 23, 2003
Sunday, August 17, 2003
Humm...been a long time huh?
I won't even guess at the dates but here's the latest update on Audra.
After a battery of tests, Audra went to see the oncologist in early August to get the test results. Audra was feeling pretty well going into the doctor's visit, particularly in her recuperation from the hip surgery. We were however well aware of multiple tumor in her body and the partially removed tumor in her brain. Yah, remember that? I kept reminding Audra that despite the news we were expecting, she was actually feeling pretty well. Truth is we were both expecting bad news.
After an extremely long wait while the doctor poured through a stacks of MRI's and readings, he believes that everything looked pretty much the same as her tests about 3 1/2 months prior. One exception however was her upper move vertebrae which was reportedly showing new tumor. As the doctor put it, that vertebrae at the top is pretty important. It's the one that holds you head on. This guys a real trip. He told us that if any of the tumors in her spine grow, particularly the ones opposite her neck, and the tumor begins to press against the spinal cord and her esophagus, she would be like Christopher Reeves except she would not be breathing. Honest, that's what he said. Strangely enough, we all laughed. I think we were laughing at the fact that he said it. That may not be funny to you reading this update, but its still funny to us in some stomach-knotting kind of way.
So that tumor at the top of her spine sent us from Dr. Rosen's office right back to the radiation oncologist's office. An unannounced office visit with and a long wait. The radiation oncologist is a super nice guy, Dr. Ng (pronounced "Ing"). He's the oriental version of Doogie Howser. He once stopped Audra in the hallway to ask how she was feeling (he was not in his white jacket yet) and I thought he was the Chinese food delivery guy. Nonetheless he's a super nice guy and seems to always willing to accommodate Audra. This day was no exception. He did note that Audra has had so much radiation to her spine that hitting this last vertebrae and avoiding the other areas was not going to be a text book treatment.
Audra has subsequently started her 10 radiation treatments. Her last treatment was on Thursday, 8/14 at 8:30am in NYC. It was later that afternoon that the power went out in the northeast. Luckily she and her father was in and out of the city by 12 noon. Thank goodness she had an early appointment. The prior week she stayed overnight with her girlfriend Lois because she had an afternoon appointment followed by a morning appointment.
Aside from some have it/don't have it appetite issues, she's doing fairly well. Besides the radiation she's going back to see the neuro-surgeon to see if he thinks anything can/should be done to the tumors on the spine. Audra said that even if he wants to do surgery, she's not sure she'll agree. She's said that before and still went through with it. We'll see.
That's it for now. Thanks for reading.
Sunday, August 17, 2003
Monday, July 07, 2003
Hello everyone it is Audra once again. Everyone said it was nice that I wrote so I thought I would do it again. All is going very well since my hip surgery. I started off waking with a walker and now have a cane. Without the ok from my Doctor I do walk without the cane sometimes. Ops I should not be doing that. The first two days I came home my sister Angel stayed with me because I needed help and Glen went away on business for a few days. Since then I have been getting around mostly by myself. Mom and Dad have been driving me around since I can not drive yet and Angela spends much of the day at camp. She loves camp!
By the way, Mom and Dad have been married for 50 years. HAPPY ANNIVERSERY!!!!
I have an appointment to see my orthopedic surgeon, Dr. Horowitz on July 14th. I also need to make an appointment with my oncologist one day this week. When I see my Dr. Horowitz I am hoping he will say I don’t need to keep doing my hip precautions. What is a hip precaution? I can’t bend past 90%, turn my left foot inward, or cross my legs because it could pop my hip out of place.
I did get the green light to go in the pool, with help.
Thanks to everyone that sent cards, flowers, and came to visit me. It means a lot to know people care. We will keep you up to date.
Love, Audra
Monday, July 07, 2003
Thursday, June 19, 2003
Audra's rehab is going quite well. She's expecting to come home on Sunday. In the meantime she seems to be enjoying the nursing home's, I mean rehab unit's activities. Audra is becoming a real bingo whiz. I think she's looking to become the karaoke queen as well.
Speaking of kids, today Audra's "mother" was asked to pay for the TV rental since Audra was too young to pay her own. Funny thing however, It wasn't Audra's mother it was her girlfriend Joanne. Daddy (me) wasn't there to enjoy the moment but I had a good laugh at Joanne's expense when I was told the story.
Did I happen to mention that Audra's roommate thinks I'm handsome?
Thursday, June 19, 2003
Tuesday, June 17, 2003
Audra has been moved to St. Mary's Medical Center in Langhorne, PA. We're expecting her to be there for 5-10 days for in-patient rehab. She's doing well, feels good and trying to get back to everyone that's called.
She's on a strict rehab program that has her doing some type of rehab between 10:30am - 12 noon and 2:15pm - 4pm every day. Audra is quite young compared to the other patients. Everyone thinks Audra is 20 years old. They'll ask while I'm sitting right next to her. That makes me her father I guess.
Tuesday, June 17, 2003
Friday, June 13, 2003
Success!
Audra was wheeled in for surgery at her 1pm scheduled time. About two and a half hours later Dr. Horowitz told us the hip replacement went well, just as expected. He said her bone, although brittle, was in a bit better shape than they expected.
We saw Audra about 2 hours after surgery and she was in great spirits. She said she had some discomfort in her hip but other than that, she was feeling fine. Today, Friday, she's should be sitting up and by tomorrow the doctor said she'll probably be walking.
If all goes as planned, Audra will be enrolled for in-patient rehab at St. Mary's Hospital in Langhorne on Monday. In the meantime she'll be in Virtua West Jersey Hospital of Marlton, NJ, room 409-D.
Friday, June 13, 2003
Sunday, June 01, 2003
Glen: I guess Audra was a bit bored of her own blog so here's and update right from the horse’s mouth:
Audra: Let’s see the past month of May. I have been traveling to NY by car with Glen, Angel, and Dad (Angelo). No more trains for me. My girlfriend Lois form Pittsburgh has been over to see me a few times and also traveled up to NYC with me. Lois is a very old and dear friend from elementary school. We used to get in a lot of trouble together. Her family moved back to Pittsburgh but we stayed in contact, thanks to her. Most of you know how I hate to write and if you did not know you know now!
I have been getting blood transfusions, chemo treatments and Antibiotics (for blood infections) most of the past few months. In a recent x-ray I had, it showed my right shoulder and left hip are not doing that well. Possible fracture in my shoulder but Dr. Rosen is most concerned about my hip since its weight bearing. Glen and I went to see my old orthopedic surgeon Dr. Horowitz in Voorhees, NJ. As it ends up I am going to have yet another surgery. Never Finished I guess. They will be replacing my left hip with a fake one. I will be in the hospital for may be 3-5 days and then some rehab. We will know more once I have the surgery. If my blood counts hold up, the surgery date will be June 12th. Everyone say a prayer or two for me. We will not be in New York for this one we will be in New Jersey and hopefully rehab will be close to home in or around Langhorne. The hospital for surgery is Virtua West Jersey Hospital – Marlton.
The past month has not been completely bad. There is some good news. The week of May 17th Glen, Angela, Nephew Paul, Angel, Mom, Dad, and I went on vacation to the Outer banks in North Carolina. My friend Marilynne (I met her back in 1992 we worked together at the bank) and her husband Gary let us be the first renters (it was a gift!) in her beautiful remodeled ocean front house. The home is gorgeous. We only had two beach weather days but it just did not matter. It was so nice. The house can sleep 10 if anyone is looking for a great oceanfront vacation house. We have pictures. Also we had a little Memorial Day picnic at our house. Everyone brought something and helped out so it was nice and not to much work for me, But I was exhausted once everyone left. The weather was awful but it was nice being with everyone. Well we will up date again before surgery I promise.
Glen: Another update before her June 12th surgery? She’s getting a bit ambitious. Perhaps the drugs are making her delusional.
The Hospital
Dr. Horowitz
Outer Banks, Aunt Angel, Angela and Paul
Sunday, June 01, 2003
Saturday, May 03, 2003
I will eventually learn that it's easier to update this site more frequently instead of less.
Thalidomide treatments have ended.
Navelbine treatments continue every two weeks or so. Audra also continues taking 400-600mg of Gleevec each day.
Zometa is being injected once or twice a month to help strengthen the bones.
Audra has been in and out of th cancer center over th past few weeks. Seems the combination of Navelbine and Gleevec have continually knocked her white and red blood counts down to dangerously low levels. Her return visits have mostly be for blood transfusions. Unfortunately during her last transfusion on Wednesday, 4/30, she contracted some type of infection. Although she feels fairly well, she is back in NY receiving IV antibiotics. Except for a quick trip home this afternoon, Audra will probably be in NY until Monday.
The chemo has thinned Audra's hair quite a bit. When we went out to dinner last weekend she donned a wig for the first time in years. She surprised us all by wearing it. It was quickly removed in the car on the way home from dinner and has been on since.
Audra has not had a CT or MRI scan in a few months to determine if these treatments are effective. I'm sure this is coming soon enough.
Saturday, May 03, 2003
Thursday, April 03, 2003
A new post! It’s been too long time and for that I apologize.
About two weeks ago, after Audra’s red blood count took a nose dive and she required to pints of blood, doctor decided to roll the dice and add yet another drug to the mix. The new drug is Thalidomide. Sound familiar to anyone?
Thalidomide was used in the 1960’s as a morning sickness medication for expectant mothers. The drug was discovered to cause serious birth defects in newborn children. The drug was pulled at that time but some years later this same drug was found to be a good treatment for leprosy. More recently the drug has been used to treat various types of cancer. Not a cure by any stretch, closer to experimental, but it does serve another purpose for Audra in addition to chemotherapy. Thalidomide knocks her out. Audra takes a few pills at bed time and she checks out of the world for 8 solid hours. After weeks of restless nights, now the Thalidomide knocks her out.
So, if you’re keeping track at home Audra’s chemotherapy regimen includes: Navelbine every two weeks, Gleevec every day, Thalidomide every night. In addition she’s taking Zometa every two weeks to help re-enforce the bones and painkiller for pain. There’s even a few other drugs that I’m not sure what they do.
Audra has been having much better days now that she’s sleeping through the night. The Navelbine is still knocking her on her butt every two weeks. A few shots of Neupogen to replenish her white blood cells, a few pint of blood to replenish her red blood cells and she’s back to normal just in time to start the cycle again.
That summarizes the situation we’re in, day after day, week after week.
Thursday, April 03, 2003
Wednesday, March 12, 2003
With a week of recovery after her radiation treatments, throat infection and IV port infection, Audra ventured back to NY today to see the good doctor for her next course of treatment. Although a bit slower afoot than normal, Audra had a pretty good week of recovery. She even spent some time shopping during the week which ultimately exhausted her. Relaxing is the activity of choice and we're all getting some good at it. I just wish Angela would catch on a bit more quickly.
Audra's blood work confirmed that she was recuperating. All of her counts were back on the rise. After her CT scan which confirmed some small tumor growth in her lungs, the doctor assured her that nothing was life threatening. The doctor's assistant told Audra that she's not at the end of the line with treatments, there are still options. While there's no "cure" they are hopeful that one of the newer therapies can hold the cancer at bay. In addition, Audra still has a few radiation treatments to complete. While waiting for her blood work, some kid sat next to Audra and asked how she was feeling and what treatments she was taking. I thought it was a patient that she had befriended. It ended up being her radiation oncologist...he looks about 25 years old, he can't be more than 35. Very nice kid/man. He told her that she can finish up the radiation treatments whenever she feels up to it. He would work with Audra to try to minimize the irritation to the throat.
Before we left NY, Audra received an injection of Navelbine , the chemotherapy treatment that she and her doctor decided upon. That was chased with her monthly dose of Zometa to help build up her bones. So the going forward plan will be weekly shots of Navelbine and bi-weekly injections of Zometa. At the same time, Audra will restart her Gleevec. The doctor said he would be happy if Audra got up to 600mg of Gleevec per day (6 tablets). We're looking at weekly trips to the big city and if she decides to resume radiation, she'll probably stay a few days up there.
So to summarize: A few spots (spots = tumors) on her spine that have been radiated but are due for additional radiation. A tumor in her brain that was partially resected; the other part is still there. The spots on her lungs that seems to be growing ever so slowly...which the doctor confirmed is strange in itself. There are a few new spots somewhere else in her abdomen that didn't seem to concern the doctor. Her shoulder and hip have tumors that were radiated. There are some other small spots on or around her rib cage that haven't been treated yet. Tomorrow Audra, Angela and Pop-Pop are going to see the musical Annie which is being performed at the local middle school and I'm leaving for Myrtle Beach. Life goes on................
Wednesday, March 12, 2003
Sunday, March 02, 2003
Audra and I went to NY on Wednesday because she was feeling terrible and running a low-grade fever. They ran some test and prescribed antibiotics anticipating some type of infection, perhaps on her IV port. We headed back home late Wednesday afternoon. After 24 hours without any improvement, Audra and Angel headed back to NY on Thursday evening after Audra's fever spiked to about 102 again. Audra's low blood counts due to radiation and chemo, and an infection don't go well together. After a two days of continual contact with the cancer center regarding the fever, the tests taken on Wednesday confirmed that Audra's IV port was the source of an infection and probably causing her fever. Late Friday afternoon her IV port was pulled and she was started on IV antibiotics, in a new temporary IV port in her arm. Arrangements were made for Audra and Angel to spend the weekend in NYC so Audra wouldn't be too far from the cancer center. When Audra is home, she's worried about having to get to the cancer center a quickly as possible. When she's at the cancer center, she's thinking about how soon she can get home. She is much more comfortable being close to the cancer center despite her overwhelming desire to be home.
I decided to spend the weekend in NY perhaps giving Angel a break. Angela and I packed up Friday evening and headed to NY to stay with Audra and Angel. Angela stood the entire time on the train just looking out the window. It was completely dark outside but she was excited just to be on the train. First stop out of Trenton is Hamilton. At that stop Angela asked if we were almost there and announced that she had to go to the bathroom. An hour and a half later, in our hotel room, she finally got to relieve herself. I'm not sure if the thought of peeing on the train was "neat" or she really had to go. Regardless she stuck it out until we got there.
Angel had decided to stay in NY with Audra. Angel and Angela tooled around the city while Audra and I napped or watched TV. Besides the name, Angel and Angela have another thing in common, they like to eat. Seems like every time they went out, they came back with something good to eat, often leftovers from what they just had. I'm hoping little Angela doesn't take a liking to beer any time soon.
We're still NY so I'm going to run to get back to Audra at the cancer center. When I update this post later today, I'll tell you about a nice gift Audra received and what Angel and Angela ate as a snack.
Sunday, March 02, 2003
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
Sunday, January 19, 2003
Audra and I spent Friday afternoon at St. Vincent's Cancer Center in NY. The CT scans from Wednesday showed significant deterioration of the bones in her hip and shoulder. Our trip on Friday was to prep her for radiation treatment to those areas. The radiation oncologist suggested she be extremely careful carrying heavy objects (like a pot of water) and walking on steps. A break to those bones, particularly the hip, will put her in a wheelchair. They are going to shoot her with some high level radiation to stop or retard the growth of the tumors, hopefully long enough to let the chemotherapy kick in.
Audra's gape has become noticeably different now that she's favoring one leg. She has complained about occasional pain in her shoulder for some time now (a few months), and her hip more recently (a few weeks). Each day that passes is more emotionally and physically difficult than the prior. At least that's my opinion. As much as Audra is sticking to her diet and daily routine, it's not that easy any more. Simply going to the bus stop with Angela is difficult. Intolerance of the cold is side effect of one chemo and the short walk on one bad leg can be taxing. She claims that the leg doesn't really 'hurt' but it doesn't look pain-free when she walks.
Sunday, January 19, 2003
Tuesday, January 14, 2003
I finally updated the link to Liz's picture so give it a try. The shirt is quite flattering and it really goes with the plastic flowers, cool!
We spent most of Saturday (1/11) morning running around getting x-rays of Audra's shoulder and hip. While the PET scans is showing tumor activity, the doctor wanted x-rays to determine how the bones were holding up. He said he wanted to "determine the risk of fracture." Our wonderful insurance company insisted we go to the local hospital to get the x-rays. After the x-rays were taken, we were told that the hospital wasn't able to "give us" the films because their machine was broken. We had to shoot over to another branch of the hospital in Northeast Philadelphia where we picked up paper copies of her x-rays about 45 minutes later. They had the technology to transfer the images electronically but they were not able to print them. When we did pick them up they were paper, not film. Monday morning I overnighted the paper x-rays to her oncologist in New York.
I'm not exactly sure what the doctor said about the x-rays but Audra believed he called them "f*cking shit" or something to that nature. And he said that if Audra were to fracture a bone, he would be first in line to testify against the insurer. Hummm, I thinking he isn't happy with the way things are going. After all we went through to get the x-rays approved. then taken on Saturday morning, and shipped overnight and the doctor said they were shit. This pushed Audra over the edge so she called me at work and asked me to get involved with the insurance certification and approvals process. To make a long story short, Audra's oncologist in NYC does not participate in any insurance plan. He's a free agent who accepts whatever a patient's insurance company is willing to pay for his specialty. Because he doesn't participate, the insurance burden is on the primary care physician who must carry out / force / push through the orders on behalf of the oncologist. And until recently, Audra's primary care physician has been great in this regard.
After a couple of phone calls to Aetna, the subcontracted imaging company and the primary care physician, I think we got this worked out again. I'll need to follow up with a letter reminding all the parties that they're on thin ice and the next lapse in care will justify a lawyer's involvement. I threatened this once before about three years ago and it was smooth sailing thereafter. We even had an Aetna case manager assigned so any "problem" could be processed through that one person. I hate to be such as pain in the ass but it was obvious after talking to Aetna and the imaging company, that it was too easy for them to point the finger at one another as the problem in the process. And to the point even more, that the representative from the imaging company (National Imaging Associates) I had on the phone couldn't explain to me why Audra was initially denied her PET scan. She apologized and said maybe someone new was handling the approval and didn't understand. Complete bullshit and not my problem.
This story is not over unfortunately. Tomorrow Audra and I are going to NY to have CT scan of her shoulder and hip. Since the x-rays were not good, the doctor insisted on a CT instead. Audra made a 4:55pm call her primary physician today to put through a STAT order for CT scans which are to be completed in NY. Aetna will want the scans to be done locally after we wait 24-48 hours for approval. In the meantime Audra and I will be at the hospital in NY waiting and arguing with insurance company. Should be fun! I'll make use of the time we're waiting to draft a letter to the insurance company reminding them of their responsibility to the patient and their recent finger pointing incident during such a critical point of care.
Tuesday, January 14, 2003
Friday, January 10, 2003
Audra had a PET scan yesterday and chemo today. The PET scan required her to be injected with some type of radioactive material ...its delivered in a lead case. Apparently tumors attract this radioactive material and the imaging machine picks up "hot spots" where the radioactive material gathers. Check out (http://www.cancerbacup.org.uk/questions/tests/test-pet-scan.htm) for more information on the PET scan. Delivered in a lead case and injected directly into the body. Kind of strange who something so dangerous can be directly into the body. It truly is an amazing machine.
We haven't received her PET scan results, but we don't believe anything has improved. Her oncologist took a look at the scans today without the radiologist report and decide that she should get radiation treatments on her shoulder and hip. I guess Audra's little aches and pains in her hip and shoulder were real after all. In addition to the her standard oxyplatin chemo, the doctor today prescribed Gleevec (http://www.cancer.gov/newscenter/qandagleevec). As best we can tell, this is a fairly new cancer drug that had some good results fighting a few different types of cancer. It's a pill taken orally which is a pleasant surprise. Those of you that know Audra, know that she's a fighter and she'll continue battling on as long as she feeling up to it. Audra has the most remarkable ability to bounce back from the most adverse situations. I (we?) can all learn a little for her in this regard.
Got some sad news today that our piano playing friend Liz (from Christmas Eve) was in the hospital for a heart condition. We wish are her a speedy and safe recovery. With that, here is a picture of Liz during Christmas Eve wearing her beautiful pollyanna gift: http://mywebpages.comcast.net/lloydgj/Lizohmy.JPG
Friday, January 10, 2003
Wednesday, January 01, 2003
My apologies. Its been a while since I last posted and I believe I still need to post some Christmas Eve pictures. That will get done soon enough, but not now.
Audra's most recent chemo treatment was Friday, 12/27. Similar to the previous treatment, Audra spent much of the weekend covered head to toe in clothes due her increased sensitivity to the cold. When she wondered outside, face and fingers were also covered. By Tuesday, yesterday, she was starting to feel better and today she actually said that she "felt good." That is good!
Angela and I have been fighting off a cold. I doubled garlic intake and little Angela chugged a few teaspoons of Children's Tylenol and we seemed to have averted any serious illness. Audra managed to stay far enough away from us that she only had a case of the sniffles, nothing more. Again, good news. If Audra would have ended up with a fever, like Angela had, we would have spent New Years eve at the hospital in NYC instead of Langhorne.
Audra is having some trouble sleeping despite the sleep aids (aka drugs). She continues to complain about her right arm. She'll admit to not having any pain, just a psychosomatic - in her mind pain - because of an October scan showing tumor activity in her shoulder/upper arm. There were numerous other spots of tumor activity but its just the pain-free arm that's causing her sleepless nights. She knows its mental but still cannot overcome the block.
As is typical with most chemotherapy treatments, Audra's appetite takes a dive following her treatments. Again, today was a breakout day because she regained most of her appetite and ate three good meals. She's lost so much weight between the diet and the treatments, any appetite is a healthy. I wouldn't want her to start eating chocolate, and she won't, but I'd love to see her eat a pound of brown rice like she used to eat. Food is fuel for the body, it doesn't have to taste good. Easier said than done, I know.
Chalk up another whiz bang New Year's Eve for the Lloyds. Only the strongest partiers could survive a night with us. We had an excellent dinner at Mom and Dad's and we stayed there, chatting and playing games until 11:58pm. No typo there, that's 11:58pm. That's when Audra demand we get going. I can confirm for you now that there are no cars in Langhorne at the stoke of midnight on New Year's Eve. And too, the sound of fireworks are muted by the rubber seal of closed doors and windows in the car. Awesome baby, just awesome.
About those fabulous New Year's Eve games...my partner was Dad Fario. Those of you that know Dad can confirm; he does not pay attention, he can't hear (perhaps the reason he doesn't pay attention) and, he has no interest in winning. In other words, he's a terrible partner. When our opponents (Audra, Mom and Angel) couldn't get an answer, Dad spoon fed them clues. Damn, I wanted to win. I wanted to rub it in just like that grandfather on the battery commercial. Carrying Dad on my back, we did manage to win a few games. I'm sorry, I meant WE WIN, WE WIN, WE WIN and the girls were losers.
I know that Audra wants to get back to everyone that had emailed her or set a card. I believe she's going to start responding soon. As always your thoughts and payers are much appreciated. Something is working so let's just keep doing whatever it is we're doing.
Since I haven't posted in a week, I found out that many of our friends and family are reading this on a regular basis. I'll do my best to keep up with news about Audra. My apologies again for the tardy posts.
One final thing, Audra did ask that I remind everyone of her new email address: lloydaf@comcast.net. And my address is similar: lloydgj@comcast.net.
Wednesday, January 01, 2003
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