Sunday, September 17, 2000
I need to share some very sad news. The little wallaby that shared so much joy and laughter with us died on Saturday. I called to check up on him, and got the news. Wallabies are very susceptible to something called stress myopathy. This little wallaby was chased by school children who wanted to collect the reward for finding him and because very sick from the stress of being chased. On Friday night it seemed like he was going to pull through, but yesterday morning he wouldn't eat or drink and finally passed on to wallaby heaven. The nurse who runs the assisted care home where the little wallaby lived was so kind about sharing about him with me. I still hope to go over and meet the mother wallaby and the other animals that live at the home.
posted by Karen Weber Sunday, September 17, 2000
Monday, September 18, 2000
I have my first radiation treatment this afternoon at 1:00 pm Phoenix time. This will be my regular appointment time, M-F, for the next 7 weeks or so. If you think of it, please take a moment to stop and pray for me. Following a great tip from another survivor, I will be using cool imagery during radiation treatments. I'll write more about this later on. Right now, I'm on my way to my women's Bible study group.One last thing, if you would like to sponsor me in the Oct. 8 Phoenix Komen Race for the Cure, please send me some email. All monies go to fighting breast cancer.
My first radiation treatment went fine. The woman who did the simulation worked today with the radiation therapist who will be administering my treatments to make sure that the set-up is exactly right. The actual treatment takes very little time. I felt a little tingling on the skin near the nipple during the treatment at the first angle, but nothing during the second angle. The room is very chilly and there is a constant movement of the air, which helped me with the cool imagery I mentioned earlier.
I got an email from Hilary who told me that Bernie Siegal's ECAP group found that women who used imagery that involved cold or cool scenarios had fewer skin problems than women who used imagery involving warm or hot scenarios, such as laying on the beach in the warm sun. So I decided to picture myself lying in a cool mountain stream, feeling the water flow around me while the breeze whispers in the pine trees overhead. The chill of the room, the movement of the air, and the white noise from fans really helped to make the imagery real for me. Thank you, Hilary!
In my excitement about wallabies last week, I forgot to mention that I hope I have found a new oncologist. I didn't know where to find someone. My GP said he didn't really know any oncologists. My surgeon, who referred me to the first one, didn't really want to give me a referral to another one. I really didn't know where to find a new oncologist. Thursday morning during my morning quiet time with God, I asked him for help. While I was in the waiting room at the radiation facility, the woman sitting next to me started telling me about the oncologist her friend goes to, how compassionate he is, and how he treats her as a whole person. He is a young man with a Chinese surname and she didn't know how to spell it or the name of his practice. We found him this weekend in the yellow pages and I talked with his new patient intake person this morning. I expressed to her my frustrations with my current oncologist. I told her that I want someone who will be just as aggressive in healing the whole person as he is about trying to beat the cancer. I told her that I want someone who will respect me and encourage me to be an active part of the treatment team. She told me that she would not work for someone who didn't work with his patients that way. I have an appointment to meet with him on October 4. That will give him time to obtain my records from my current oncologist and review them. I also have an appointment to meet with a cardiologist on September 29 to go over the results of the May MUGA scan so that I will finally hear some straight talk about what they mean and determine if there should be any follow-up testing.
I am praying that this time we have found the right people. When I think back to my first appointment with my current oncologist, the warning signs were there, but we were in such shock that we didn't see them. He tried to convince me that there was no point in getting a second opinion. Then when it was clear that I was determined to get one, he tried to control where I sent it. He prefers to send it to another hospital locally. I wanted to send it to the AFIP in Washington, DC,, because they specialize in second opinions on rare tumors and because they are the organization that the NIH recommends for second opinions on rare tumors. The oncologist shrugged his shoulders and said that he thought I was making a lot of work for myself. And what if that opinion came back and contradicted the first report? Would I want a third opinion? A fourth? Where would it end? He continued to say that he didn't think it was necessary. I see clearly now that he was patronizing, dismissive and disrespectful of me. At the time, neither Rick or I saw that. It is so hard when you are newly diagnosed. You are so tender and scared and, most of all, you are so overwhelmed. There should be some kind of matchmaking service that pairs you with the oncologist who can meet your needs.
posted by Karen Weber Monday, September 18, 2000
Tuesday, September 19, 2000
The cardiologist's office just called. They had a cancellation for this afternoon, so I will go over to meet with them right after I have my radiation this afternoon.
posted by Karen Weber Tuesday, September 19, 2000
Thursday, September 21, 2000
My visit to the cardiologist was difficult yet refreshing. The cardiologist's exam room was filled with angels of all sizes and types. I felt safe there. When he walked in, he looked and talked so much like my "uncle" Larry Cole, I felt so comfortable talking to him. I told him that all I wanted was an honest explanation of the May MUGA scan. I told him that I had been asking to see the results for 4 months and that they had been withheld from me. I told him that I felt my oncologist had lied to me, in the presence of a witness, about the results by representing them as "perfectly normal for a person of your age." I told him that I had to trick an office girl to get hold of the results in the first place. I told him that I dislike using subterfuge like that, but that I had been so sick and weak during chemo that I felt I wasn't getting the truth.The cardiologist took a detailed medical history on me, then we talked about the family history of cardiac problems. My oncologist never did either of these things. The cardiologist did a physical exam more complete than anything the oncologist ever did. He also did an EKG, just a start to the tests I need to have now. The EKG shows no previous heart attack (although recent research shows that EKGs are not always accurate on women) but it did show a low voltage. The cardiologist said that he won't really be able to tell me the significance of that until we complete the other testing. I will have another MUGA scan tomorrow to compare to the pre-chemo MUGA in May. Next week, I will have a stress test. Because of my knee, they will do a chemical stress test. Finally, I will get a chest X-ray to determine if there is any cardiac enlargement.
After all this was done, the cardiologist talked honestly to me. He said that it is very difficult for a doctor to admit that one of his colleagues was wrong, but that my oncologist was clearly wrong. He said that no matter how he represented the MUGA scan results to me - whether it is as I know he did as "perfectly normal" or whether it is as the oncologist will claim as "adequate to undergo chemotherapy" - the oncologist had no right to withhold the results from me. He said that before we ever made the decision to go forward with chemotherapy, the results should have been clearly explained to me. And he should have explained the possibility of further heart damage from the chemotherapy. In other words, I was denied the opportunity to give informed consent for my treatment. If I had known, it wouldn't have stopped me from doing the chemotherapy. But we would have insisted that there be a cardiologist on the team from the very first. And if that had been done, there would have been adequate follow-up to make sure that damage to the heart was monitored and limited. The cardiologist tells me that I should have had a MUGA scan after each treatment, just like I had the routine bloodwork, to determine if my body was ready to go forward with the next treatment.
I called my oncologist's office and told them that I would not be coming in for bloodwork this week after all. I asked them to prepare a final statement for me and to get my records ready to transfer to my new oncologist. After office hours, I got a call from the oncologist. He denied ever telling me that the MUGA scan was normal, he denied ever refusing to show me the results. I reminded him that Rick heard him do both those things. Then he started yelling that he had saved my life, that there wasn't any choice but to do the chemotherapy, that the cardiologist didn't know what he was talking about. Then I screamed back that the cardiologist had no motive to lie to me, and that he (the oncologist) had denied me my right to give informed consent on my treatment. I ended by calling him a patronizing, disrespectful, lying *expletive deleted*. My behavior was bad, but I had told his front office staff that I did not want to talk to him, that he had had plenty of chances to tell me the truth and had chosen to lie to me instead. His phone call was pure harassment and self-serving butt-covering.
I am trying to process a lot of anger - anger at the oncologist being the tip of the iceberg. My surgeon, who is a caring person and an excellent physician, is who I'm really angry at right now. At the most vulnerable time of my life, he sent me to a man who lied to me and may have permanently affected my well-being. I trusted him to put me in the hands of someone compassionate and competent. The man he referred me to fails both those tests. I have written him a letter expressing my hurt and betrayal. I have tried very hard not to make the letter a venting session, but rather a call for him to re-examine his referral practices. I will sit on it a few days, refine it, and let my anger cool before sending it.
Last night at band rehearsal, during our prayer time, Uriah (our rhythm guitarist), prayed for my struggle with this anger. I feel much more at peace today. I talked to the back office staff at the oncologist's office and they have prepared a complete copy of my records. Rick is picking it up today. They were kind enough to let me fax in the release of information so that I would not have to go into the office while the doctor is there. My only concern is that the chart was at the doctor's house for over 24 hours before the copy was made. I hope that he was more professional about the ethics of dealing with medical records than he was about giving me the opportunity to give informed consent on my treatment.
posted by Karen Weber Thursday, September 21, 2000