Sunday, October 8, 2000

Well, the race was wonderful. The weather was ideal - slightly cloudy with a gentle breeze and in the 70s. They estimate they had about 27,000 people there. We did the 1 mile fun walk with Rick's partner's wife, Mary. Rick's partner, Joel, ran the 5K. The high point, for me at least, was the ceremony. All the survivors lined up together according to how long they've been survivors. It was way cool to see the group of survivors of 20+ years. I lined up with a gal who is a 9 month survivor. She and I finished chemo within a week of each other - but she has 2" long hair already! I also met 2 best friends who were diagnosed within 1 week of each other last year. We paraded into the park to the strains of Gloria Gaynor singing "I Will Survive". We were each given a pink flower on the way in. Once everyone was in, they played Survive"We Are the Champions" and we all sang. I heard women behind me (in the 11-15 year survivors group) crying. They know that being a champion in this race doesn't come without pain - they have all lost friends to this disease along the way and those women were also champions.

Phoenix Race for the Cure 2000 - pictures!

A New Way to Target Radiation Treatments
posted by Karen Weber Sunday, October 8, 2000

Monday, October 9, 2000

I'm having some pain in the burned area today - not while the Vigilon is in place, but when it's off and I need to lift my breast. In the shower, for instance, to wash. I remember a slogan we learned in PT school about burn healing: the position of comfort is the position of deformity. In other words, if you don't keep the skin stretched out while it's healing, it will heal with a scar that does not have the normal elasticity of skin. So I've got to be sure that I spend some time lying on my back with my arm over my head stretching the skin in that area every day. Sigh.
posted by Karen Weber Monday, October 9, 2000

Tuesday, October 10, 2000

My mom and dad were down for the night last night. Mom was having sleep testing to determine if she has sleep apnea (I could have saved them a lot of money - she does) and dad stayed over with us. Dad took me aside during the evening and told me that he was happy to see me looking and feeling so much better. He's not usually the mushy type and he never says anything just to make you feel better, so that was really encouraging to me. Mom was very impressed with my hair, although she thinks it is coming in darker than my hair was before chemo. Could be. It's still so short, it's hard to tell anything about color.

I am now officially halfway done with radiation. Sixteen treatments to go - ten regular, then six boost at the end. I've written down the numbers in my date book in reverse order, and I mark them off every day. When I was in the twenties, it seemed like I would never get into the teens. I can't wait to get into single digits! My breast is a light red now, but the aureole and nipple are quite a bit darker red. As long as I keep the Vigilon on the open part of the burn, I'm not really having any discomfort from the burn yet. I am having quite a problem with lymphedema. It started last week when I wasn't wearing a bra. My breast swelled enough that they had trouble positioning me for treatment on Friday. I wore a sports bra all weekend, and it helped the swelling move out of the breast. Unfortunately, it seems to have taken up residence in my side and back. The sensation is much like being bruised along my side and back, especially on the back of the shoulder and around the shoulder blade. I think it would be even worse if I didn't have a massage therapist coming every week and keeping things moving. She relieved a lot of discomfort yesterday, but there is still quite a bit of swelling and pain in the back. She dropped off a tape on self-care for lymphedema today. I'm hoping Rick will watch it with me and learn to drain my side and back for me.

I got a lot of very nice cards from people who sent checks for the Komen Race for the Cure, but one of them touched me enough to share it here. This is from a young lady I knew back when I was a teenager. Her family went to our church. She is a few years younger than I am. Here is what her card says:

Dear Karen,

Enclosed is a small check to help sponsor you in your upcoming race. I will also be doing my first-ever sincere breast self-exam this month in your honor. I'm out of excuses.

May you triumph over all your challenges.

Love,
Megan Steigler

I cried when I read this. Cards come, and cards go, but this one will be given a place of honor in my breast cancer notebook because these are the sweetest words I've ever read.
posted by Karen Weber Tuesday, October 10, 2000

Wednesday, October 11, 2000

I have a follow-up with the cardiologist this morning. I'm still waiting to hear on the repeat tumor markers and the scheduling on the bone scan and abdominal/chest CT. I need to schedule my annual orthopedic follow-up for my knee, but am holding off until I get the schedule for these tests. I've got a call into the oncologist's office about it.

Well, I've seen the cardiologist and the radiation oncologist today. The radiation oncologist said I'm doing very well with the treatment. Other than the burned area from the rubbing during the echocardiogram, the rest of the breast is doing very well. Yippeee! So on to what the cardiologist said. First, he said that he is very pessimistic that we can rebuild the heart muscle so that it's any stronger. This is different from what the nurse told us during the echocardiogram, so it was a little shocking. He said it's not totally out of the realm of possibility, but very unlikely. He said that we are past the stage where the danger of a sudden onset of a dilated congestive heart failure is the highest, but we aren't totally out of the woods. This can still happen up to a year from the end of chemo, and no tests can really predict if it is going to happen. So he will be watching me carefully for the next year. The good news is that everything else is good - blood pressure, cholesterol, triglycerides, and no sign of coronary artery disease. He said that he believes that if I can keep all those things going right that the probably outcome is that I will have the same level of heart function when I die at age 112 as I have now. So diet, exercise, stress management, etc., are going to be very important for me for the rest of my life, not just for the breast cancer but for the heart. He gave me enough of the ACE inhibitor to last me until our next appointment. I also asked him to send my reports to my surgeon and to talk to my surgeon about how the oncologist mishandled my case. I told him that I had written my surgeon a letter, but that I was afraid that he might not take it as seriously as he would if another colleague explained it to him as well. The cardiologist said that he couldn't imagine that any doctor would dismiss me, but that he would be happy to talk to the surgeon to reinforce what I've said. I sincerely hope the surgeon listens.

I've also talked to my friend at Pharmacia-Upjohn today. This is the company that makes the drug that caused the heart damage. He said that I could have been given an analog of adriamycin called epirubicin. It's just as effective and not as hard on the heart. He said I also should have had cardioprotective drugs and frequent monitoring during treatment. He strongly advised that we retain a lawyer, even if we aren't going to sue. He said that the complaint to the state needs to be handled correctly so that there is a public record that clearly identifies the negligence of the oncologist's care and so that the state board will take some action against him. So now I'm looking for a lawyer who specializes in breast cancer advocacy. There is a women's law group that does this and handles cases pro bono for women fighting for coverage with their insurance company. Their web site doesn't list anyone in Arizona, however, so I'll call the local breast cancer groups and see if they know anyone who would handle this at a reduced cost or pro bono. As Rick says, if we have to pay a lawyer to do this, then it almost makes it mandatory that we sue the doctor as well to pick up the tab on the lawyer. Suing just sounds too stressful. I'm not at all sure I even want to consider it, but I do want the state complaint done right. So.... we have to investigate the options.
posted by Karen Weber Wednesday, October 11, 2000

Thursday, October 12, 2000

The new oncologist's office was supposed to be setting up a bone scan and abdominal CT scan. After they hadn't gotten back to me with dates after a week, I started calling them. The tests were supposed to be completed before my 10/25 appointment with the doctor, but apparently because of the delay in getting them set up I can't get the tests run until 10/26. So the re-visit with the oncologist had to be re-scheduled for 11/4. The bone scan will take all morning. They'll give me an injection at 8:45 am and then do the CT scan. Then I have to wait until noon before they'll do the bone scan. There's a very good likelihood this will run over into my radiation appointment. All the tests are in the same building, so I'll just tell the radiation therapist and let them worry about whether we need to reschedule that day's appointment or not. While I had the oncologist's office on the phone, I asked if they had gotten my tumor markers back yet. They aren't expecting to see them until Friday or Monday. The nurse said the doctor will call me when he gets them.
posted by Karen Weber Thursday, October 12, 2000

Friday, October 13, 2000

Depression May Be Obstacle to Breast Cancer Treatment - treating mood can improve survival.
posted by Karen Weber Friday, October 13, 2000

Saturday, October 14, 2000

I have been having a terrible time getting any work done the last couple of weeks. Everything seems to slip to Thursday and Friday and then it's a panic situation. Yesterday I did a work marathon and got a lot done, but it would be better if I could spread things out a bit!

I'm developing little rashes/pimples all over my body. I assume this is body hair trying to re-grow. I hope this phase doesn't last very long! Last night I was rubbing my hand over the top of my head, and suddenly realized that my hair isn't growing straight up like a Chia pet anymore. There is a definite grain to it now. Cool!

One of my regular radiation therapists had been on vacation for a week and just got back yesterday. He gasped when he saw the burns under my breast. They've gotten that much worse. Quite a lot of green-yellow drainage now. Things will get worse before they get better - the boost will be going straight into that area and consists of a much higher dose of radiation than I'm getting right now. I'd venture this will take a while to heal once radiation is completed.

I spoke to my radiation therapist about the bone scan appointment. She said I'd have to come in and get my radiation treatment before having the injection of radioactive tracer. I looked confused about that, and she said it was because I would be radioactive and they wouldn't want me near their functioning gonads. So then I started wondering what the imaging facility was going to do with me in the 3 hours between injection and scan. The women in my support group say there really aren't any restrictions other than you aren't allowed to be near children. Some of them went out for breakfast, etc. So I'm confused about why the radiation therapist was so concerned about me coming for my treatment. I guess I'll just take a lot of crosswords and a good book to while away the time.

Bone Scan - here is a picture of a bone scanning machine. I thought it would be more like a tube, but it's not.

Bone scan - short Q& A about having a bone scan.

CancerHelp UK: Cancer Tests: Bone Scan - this includes a nice set of pictures showing "hot spots" on bone scans.

Taxol in addition to AC for first-line defense in lymph node negative patients who are HER-2/neu positive - this is a short comment from the author of the study that my ex-oncologist was quoting to justify his recommendation of doing 4 rounds of Taxol on me. Note this comment in the final paragraph: "And so right now in the lymph-node negative setting, I would not recommend that addition of Taxol or Taxotere, its close relative, outside of a clinical trial." I am so glad I questioned that recommendation and decided against going ahead with the Taxol.
posted by Karen Weber Saturday, October 14, 2000

Next - October 15