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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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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