My Breast Cancer Journal
March 12-18

Sunday, March 12, 2000

Well, I didn't sleep well last night. That's not really about the breast cancer -- I am an insomniac. I worked on writing the Funnies, signed up for an EZBoard for this site (I haven't set it up yet - maybe later today) and for a voice chat room for PortalHelp. We are up early because my folks are coming down today. We have to clear out enough clutter that we can all sit down together.

Authenticity. I read a book back in the early 80s about "transparency" and I think that these are the same thing. It's letting people see the real you. Most people don't. We have masks we hide behind. I have my own collection, believe me. I'm going to try to put them away while doing this project though. There's too much at stake - not for me, but for the women I hope will read this and start being more serious about doing self-exams and getting annual mammograms.

So, in the interest of authenticity, here we go: the first step in treating this cancer was for me to go off hormone replacement therapy. I had my ovaries removed several years ago secondary to endometriosis. This means that I am now fully menopausal. I've been told that this could be quite a ride. I haven't noticed any changes yet - no hot flashes, no mood swings (other than what I think could be expected from trying to deal with this new condition).

Ms. Rhino, your flowers have filled my office with the most wondrous smells. Thank you again! I'll have to move them out into a more public area when my folks come so we can all appreciate them, but right now I'm feeling very luxurious with them here on my desk.

I wrote the coming week's Thoughts and have put a note in the Monday edition about this log. I had to think long and hard about this. The natural tendency is to want to hide under a rock and hope this all goes away. My readers, however, have shown in the past that they are very special, supportive people. I hope they come, and I pray that what they read here will encourage them and give them hope in their own struggles.

Struggles. We all have them. I try always to remember that every person I meet is dealing with their own issues, and that I will never know the depths of that struggle. This awareness demands that I act respectfully. I'm an impatient person by nature. This has been the only method I've found that helps me get past that. Most people I meet in the next year won't know that I have breast cancer, and they won't appreciate what it is costing me. I know how I hope they'll treat me. I need to do the same in my dealings with others.
posted by Karen Weber

Today's link is BreastCancer.Net. There is a lot of great stuff here, including contact information for support groups by state. Lots of links to places with information on breast cancer - I'll be spending a lot of time here
posted by Karen Weber

Just a link to Art Breshears' Searchking portal: A Search Engine for all things fitness related. Where FITNESS Rules the Web!. He's added the pink ribbon to his site. Good man, good portal.
posted by Karen Weber

My folks came to visit us today. We looked at the ultrasound films and talked about surgery schedules. Everything very calm. Had a late lunch with them at Sam's Cafe, then sent them back to Prescott.

Got a call from uncle Hal and aunt Kirby. Hal got up during church today and asked for prayer for his niece's upcoming prostate surgery! He didn't realize what he'd said until Kirby whispered loudly "mastectomy, mastectomy." I told them they'd have to go back next week and change it to lumpectomy. Anyway, they called to let me know that my prostate is being prayed for. Phew! That's one less thing I have to worry about. :D

My college roomie, Terri, called today. She said to call her any time day or night, say the word and she'd fly out here. (She lives in Michigan, I'm in Arizona.) When something like this happens, you find out who your friends are. I'm feeling awed. Would I be that generous if roles were reversed? I don't know. I hope I will never find out.
posted by Karen Weber

Monday, March 13, 2000

Here's today's site: HealthCentral - Breast Cancer. News and articles from doctors and researchers to empower women. I'm signing up for the free newsletter.
posted by Karen Weber

Just got off the phone with my uncle Larry. (I should clarify - I have a real uncle Larry out in Maryland, but I was talking to Larry C., a close family friend who I've always called uncle Larry.). He had radiation for prostate cancer a few years ago and was willing to share his thoughts on the process. One piece of invaluable advice: Listen to the radiology folks who tell you to go home and take a nap after treatment! He didn't listen to them, and his immune system was compromised by the treatments. His cancer is cured, but he has lupus as a side effect of the treatmets. His exact words were: "Take the nap! The world will go on. Take a chance, don't show up." I have such a sense of guilt if I'm not doing something productive. This will be hard for me. NOTE TO SELF: naps after radiation therapy are the most productive thing you can be doing. It allows the treatment time to do its job and my body time to recover.
posted by Karen Weber

Just back from the library. I went to get Cancer : 50 Essential Things to Do When the Doctor Says Cancer by Greg Anderson, but we had to order it from the main branch. In case you don't know, Greg Anderson is a cancer survivor (who, by the way, was told that no treatment could do anything for him and that he should prepare for death). He wrote the MOST EXCELLENT book The 22 Non-Negotiable Laws of Wellness : Feel, Think, and Live Better Than You Ever Thought Possible which was my lifeline when I was going through the knee surgeries. They did have his book The Cancer Conqueror: An Incredible Journey to Wellness and so I picked hat up. I also picked up Your Breast Cancer Treatment Handbook : Your Guide to Understanding the Disease, Treatments, Emotions and Recovery from Breast Cancer by Judy C. Kneece, RN, OCN, and Making the Radiation Therapy Decision by David J. Brenner, PhD, and Eric J. Hall, D.Sc. I have my reading cut out for me in the next few days. I've also placed on order The Cancer Journals by Audre Lorde. They have it as ASU, so I should have it in hand in a couple days. I guess I'll go read now :-)
posted by Karen Weber

I've read a couple chapters in the Kneece book and here's what I've learned: I need to acknowledge that I am afraid. It's not helpful to act brave when inside you are scared to death. I also need to give my family permission to express their own fears. Denial isn't useful for any of us. So mom, I don't want to be "grandmothered" (you know what I mean). I know you are as scared as I am. It's OK for you to say that to me.

I also learned that breast cancer occurs more frequently in the left breast than the right. This isn't useful information, except that it makes me feel a little more normal. Mine is in the left breast.

I also learned this interesting - and mind boggling - fact: By the time a tumor is about 1 cm. (mine is just slightly larger than that), cancer has been growing in the body for 8 to 10 years. Wow. I think about what I've been through in the past 6 years -- total knee blowout, loss of my career, 4 major surgeries, 2 years essentially homebound -- and it already seems like too much. But the last two years, I've been pretty healthy. My PCP (primary care physician) forgot what I looked like and my insurance company collected interest on my premiums. To think that through that all, cancer was growing in my body and I didn't know it -- well, maybe I wasn't ready to know it until now. Maybe I needed the last couple years of relative health to get strong enough to fight these beasties.

Back to the books....
posted by Karen Weber

Just got a postcard from my mother saying she'd read this journal, and she has 'fessed up to being scared. Thanks mom! It's easier for me to be scared if I'm not alone in it.

Am talking via ICQ with Ann, a friend from Michigan. She has a friend undergoing the radiation treatments now. I hope she will read this and contact me. I'd like to share some mutual encouragement.
posted by Karen Weber

Just found Judy Kneece's page: EduCare- Cancer Help- Breast Cancer. It has some excerpts from her books. Be sure to click on the Spiritual Aspects link and read What Breast Cancer Cannot Do (it's at the bottom of the page). I'm posting this where I can read it frequently.
posted by Karen Weber

Just found this great site: Friends in Need. Be sure to read the Ten Commandments for Cancer Survival. Another thing I'm going to print out and read every day.
posted by Karen Weber

Well, we have been out in the garage trying to figure out why the garage door opener is suddenly trying to take over the world. This is one of the realities of breast cancer - life goes on with all the joy, silliness, and unpredictability as before.

Told a few more neighbors. Cindy, next door, cried with me. But then she put her chin up and said, "You'll get through this. You've been through tough times before and you got through them. You'll get through this." Darn straight! Good to have someone reinforce it though! I told her to keep reminding me!

Just spent an hour or so responding to emails from cousins, long time family friends, and assorted other folks. I can tell my mother sent something out to her entire address book. She is a good do-bee!

My massage therapist called today. She missed last week's appointment because she was snowed in. Silly girl went to Colorado without checking the weather forecast. ("The sky was blue when we left...." lol) She's done wonders for the pain I had from previous surgeries and I'm glad she'll be here to help me through this as well. She does craniosacral therapy mostly, but also some energy work that I don't understand. I can tell by how my shoulder and arm reacted to the biopsy that I'm going to need her help after having surgery. Goodness, I was wimpy about that biopsy. My arm hurt for two days, going up into the muscles of my neck. Couldn't get comfortable in bed. Couldn't get comfortable in the reclining chair. Worse yet, I couldn't get comfortable at the computer. My mom says she learned some tips from her PT on positioning during her recent bout with shoulder arthritis. I'm going to take advantage of that!

I'm going to take my Greg Anderson book to bed and do some more reading. Night all!
posted by Karen Weber

Tuesday, March 14, 2000

If you read the note from Gary in my guestbook, he mentions his wife and her journal. Here is a direct link to that journal:Breast Cancer Journal. It's very encouraging.
posted by Karen Weber

Here is today's site: Radiation Therapy and You. A Guide to Self-Help During Cancer Treatment. As you can probably tell, we are very focused on making the decision between lumpectomy/radiation and partial mastectomy. It dawned on me this morning, after getting an email from someone just finishing radiation treatment who shared about joint pain, that I need to consider whether this will affect my knee at all. When I blew my knee out in '94, the traditional surgeries couldn't do anything for me. I had an experimental procedure done called an osteochondral allograft. They took bone and cartilage from a donor knee and placed it into mine. Follow up MRIs showed that it had incorporated into the joint perfectly. The donor cartilage is a bit thinner than my native cartilage, but the research assistant performing the MRI told me that if I was careful, it should last into my 60s, which is my goal. I plan on living through this fight with the beasties, so I still have to be focused on meeting that goal for me knee. So I've got a call into the wonderful folks at OrthoMed at UCSD in La Jolla for word on whether there is any need for concern in undergoing radiation treatment. As several boyfriends told me way back when - nothing is ever easy with you, Karen! Ain't it the truth!

Garage door update: the opener is dead, kaput, finit. Its plans for world conquest foiled, it refused to continue working with us. We are on manual for now. Hope Rick can get that replaced before I have the surgery. I don't like wrassling garage doors that have been baking in the AZ sun under any circumstances, but I definitely don't want to undertake it with one arm on vacation.
posted by Karen Weber

Well, today I worked with the gal who will be taking over my job at EP so that things can go smoothly. And my massage therapist made it over for a treatment. I'm still reading. Got an answer from UCSD that the radiation shouldn't have any impact on the knee, but they were glad I asked first. I may miss my usual May rendevous with them this year and have to head over there later when everyone else from Phoenix is also escaping to San Diego.

Got flowers from Steve and Amy Weber, my husband's nephew and wife. Did I marry into a good family or what? Make that a great family.

I have 3 bazillion phone calls to make and I don't seem to be able to motivate myself to make them because they aren't directly applicable to making the surgical decision. I also need to pay bills and do some other things that I just can't seem to get up for. Today I'm going to give myself permission to put them off. Tomorrow they must be done!!!!
posted by Karen Weber

I've been waiting for the signs of menopause to strike - it's been 5 days since my last estrogen pill and my ovaries are long since gone. I think I'm having my first one - or I'm coming down with the flu. Not sure. Hot, nauseated, sweaty, a little woozy. Comes and goes. It made for an interesting second half in the upper deck at the Suns game.

I spent this afternoon clearing up Exceptional Parent business by long distance. I was touched when I called the doctor who has been working with me on the Search and Respond column. I knew he was a nice person, but his response to the news was so warn and affirming. I just have a couple more things to do to finish up there.

I read today in the Greg Anderson Cancer Conquerer book. The thing that caught my attention the first time through: cancer usually takes hold and starts to develop during a time of high stress, when things feel hopeless, when you feel like a victim. If that doesn't describe me about 6 years ago when I blew my knee out, I don't know what does. Some of you went through that with me. (It was so good to read Marianne's note in the guestbook and to get a postcard from Judy this evening and email from Reggie. I can't find Carol's email address - if one of you has it, please, please send it to me. I miss her wisdom so much and regret falling out of contact with her. Plus, she's met Uncle Hal so she would truly appreciate his prayer for my prostate!) I described that process like being out in the middle of the ocean and not knowing which way to swim. Land might be close in one direction and thousands of miles away in another, but without being able to see it, how do you know which way to swim? So you just tread water. The failed surgeries, the loss of my career - it was an awful time. I think that's when the beasties took up residence. Anderson says that cancer is a process, not a static condition. He calls it "cancering." He gives some pretty good steps to take to understand the very personal process of cancering. I'd go into them more now, but I think I need to go strip some clothes off! Very hot! Night all.
posted by Karen Weber

Wednesday, March 15, 2000

Here is today's link: Anniesappleseed Project: Relevant Studies. Offers a summary of relevant medical studies of complementary therapies. The author, Ann, was diagnosed with breast cancer in 1993. She is one phenomenal woman! Take a look around this site.

I'm late getting started today. I picked up a friend with a 5-month-old baby to take her with me to my small group Bible study this morning. We are studying prayer - how's that for great timing! We had a terrific study this morning on answered prayer. I have a lot to digest and pray about.
posted by Karen Weber

Here is another great article to read: Top Ten Decision Lessons from the Community Breast Health Project in Palo Alto, CA. Great advice here.
posted by Karen Weber

Thursday, March 16, 2000

Today's site: AMA Health Insight - Breast Cancer. This isn't very helpful for the person who has been diagnosed with breast cancer, but it's got pictures and explanation of a breast self-examination and tells you why you should be doing them.
posted by Karen Weber

OK, some things I'm learning from reading Greg Anderson's book, Cancer Conquerer:

I can choose what I believe. I believe that getting this diagnosis is another step in helping me re-focus my life. I'm a bit out of balance right now. This is going to help me get back to where I need to be. I believe that what the medical establishment can do with a cancer caught this early is nothing short of miraculous. I WILL survive this and be stronger on the other side. I believe that this is an opportunity to help other women learn about breast self-exam and the importance of mammography. I believe that this is a way for me to enrich my prayer life. I believe that great good will come from this experience. I believe that this cancer is a gift. That may sound odd to you. I know that I had a difficult time believing that anything good would come from the problems I had with my knee, but when I look back, it did. That's the secret of attitude. I can choose what I believe.

My immune system is a cancer-killing machine. Every day for 43 years of my life, my body has fought back against cell mutation caused by toxic chemicals in water, air, food, etc. Every day, my body has rejected cells that were pre-cancerous. Kicked them out. Told them to hit the highway. Nothing has changed. A few cells took advantage of a weak spot in my life and gained a foothold. That weak spot - it's history. The past is not the present, nor can it define the present if I choose otherwise. I choose otherwise. I choose life. I choose to work with my body to get back to killing cancer cells.

Cancer cells are confused, weak cells. We hear the word CANCER and we tend to envision monster cells that invade, loot, pillage, rape our bodies. They aren't like that. They are regular cells that got a little confused and now they aren't quite sure what to do. With all the best intentions, they do what cells do - reproduce others just like themselves. By taking care of myself and working with my medical team, we can clear out these confused cells.

Cancer is a process. I can take control of it. I am responsible for my life, my choices, and my attitudes. I am the most important member of the medical team that will be managing this cancer. I can master the process.

There is more. I'm still processing it. I didn't post anything last night. I had a rehearsal with the band for Sunday's worship service, and I came home tired. It was more of an emotional weariness than physical. Music taps into a different part of the brain than the spoken or written word. I can now talk about issues like healing and God's love without breaking into tears. But singing about them was another story. And me without kleenex! Our fearless leader was so compassionate. He never made an issue of the fact that I was making rehearsal difficult. He stopped for prayer when I needed a break. The other singers offered their support even while going on with the rehearsal. I am so blessed to have found this church and these people.
posted by Karen Weber

Here is another good site: ACOR - Association of Cancer Online Resources. They have lots of mailing lists available, including lists for spouses of women with breast cancer.

I just got a hard copy of my lab report so now the beasties have an official name: adenocarcinoma: malignant cells consistent with invasive ductal carcinoma. I'm checking the medical lit and online resources right now.
posted by Karen Weber

Here is more reading on the types of breast cancer: OncoLink: Histologic Classification of Breast Cancer.
posted by Karen Weber

This is a good discussion of the difference between in situ and invasive breast cancers: Patient's Guide to Invasive Breast Cancer from BreastDoctor.com. Please note: there are pictures at this site.
posted by Karen Weber

Here is a link to the Google Search for invasive ductal carcinoma. If you aren't using Google, you're missing a great search engine!
posted by Karen Weber

Standards for care of Invasive Breast Carcinoma developed by the American College of Surgeons, the American College of Radiology, and the College of American Pathologists. This article was written for physicians, but it is informative and lays out the standard of care a woman should expect from her medical team. I've read it and printed out for reading over again as my treatment progresses.
posted by Karen Weber

Friday, March 17, 2000

I'm making a list, checking it twice..... well, sort of. We have the meeting with the radiology oncologist today. I'm getting together the questions I should ask him. I was disappointed to find out that surgery can't be scheduled until March 28th. It seems silly, I know, but I'm angry that this may force us to cancel our vacation. We have a great cottage lined up on Lanai and I've been looking forward to swimming with the fishies. The surgeon initially said he thought we could get it done in time that we could go, although it would mean no swimming with fishies. Now, if the surgery is gong to be that late, I don't even know if I'll be ready to travel. That's a long flight. This is so silly. I'm so glad we found this, and I should be more than happy to cancel a trip to fight this. It just seems like one thing too much right now. I'll be on the cancellation list, so maybe someone will change their mind about an elective surgery and I can take their spot.

I went to the library last night for my copy of Anderson's 50 Things to Do When the Doctor Says Cancer and I've just started it. It appears to be a book you work your way through, so I'll probably order a copy of it. I've also started my Wellness Book as he recommends. It's more of a folder right now. I want to stop at the office supply place and find a bright, cheerful notebook. All I've got on hand here are pretty ugly.
posted by Karen Weber

Here is a great page on how to do a Breast Self Examination. Ladies, please bookmark this page. Men, please send it to your wife or significant other. Once a month! Set a date with yourself. It's important.
posted by Karen Weber

Here is a link I found for mom: OncoLink: Mother's Handbook from Mothers Supporting Daughters with Breast Cancer.
posted by Karen Weber

Mom, here is the home page for the group that wrote that booklet: Mothers Supporting Daughters with Breast Cancer. Oncolink has an outdated link for them, but I called the phone number and talked to the wonderful mother who started this group with her daughter. She is so warm and loving. They are going to send out literature and when we have the results of the biopsy following the surgery and we know what kind of treatment I'll be having, they'll match us up with a mother/daughter team who beat the same kind of beasties.
posted by Karen Weber

I'm back from the radiology oncologist and to give you a clue about how it went, I'm eating chocolate. Before he would meet with us, he took the mammo films and the ultrasound films across the street to the hospital for more opinions on what he was seeing. He talked to all the radiologists, he called the radiologists that read the mammos, the physician who did the original ultrasound, and anyone else he could get hold of. They all agreed that they were seeing two beasties, not one dumbbell-shaped beasties. That means I have multicentric disease meaning that there are multiple lesions in the same quadrant. He talked to us about the research work done by Barbara Danoff, who works only in this area. Her studies have shown that lumpectomy w/ radiation is just as effective as mastectomy in properly selected patients. She has shown that the risk of recurrence in the first 5 years in women with multicentric disease is about 40%. This concerned him in my case because we would be dependent on mammograms to identify a recurrence, but my breasts are so dense that mammograms are difficult to read. He said that given how deep my tumors are in the breast, how young I am, how dense my breasts are, and how high the chance of recurrence is that he does not consider me a good candidate for a lumpectomy. He said that if I wanted to do it, he would work with me. I told him that my priority is life, not appearance. I want to do what gives me the very best chance of beating this thing. He gave me the name of a surgeon in town who does the TRAM procedure to reconstruct the breast from your own tissue. He also said that he felt the chances were very good that I would also need chemotherapy following the procedure. The good news is that the chances of surviving are the same today as we thought they were yesterday, it's just going to be tougher, longer, and more painful. He sent me out to get Dr. Susan Love's Breast Book. It's a mere 627 pages, so I'd better start reading now. Sigh.
posted by Karen Weber

Saturday, March 18, 2000

I can remember in the bad old days of PMS, going over speed bumps and saying I'd like to just cut my breasts off. I didn't mean it of course (although there were wild amounts of hormones involved, so you never know - in the moment, I might have), but it was so easy to say. Being large-busted, I've also considered that the heaviness of my breasts, the pull of the bra straps, probably is a big contributer to the headaches I'm plagued with. I've thought longingly about breast reduction surgery, but never taken even the first step toward doing it. I haven't even researched it. So it may seem that it was easy to say that I prefer life over sparing the breast. It really isn't. There is a cost to every decision, no matter how right, how life-affirming, how necessary the decision is. Only the person making the decision can truly know the cost. Those who love the person can perhaps make a close estimate of the cost. But I cannot afford to ignore the fact that they are paying their own cost. I can't ignore the fact that this decision also has a cost for my husband, my parents, even my friends. They are not losing a piece of their body. Perhaps I have the easier road, because my loss is at least partially tangible. The others are losing the person they knew - she is going on a journey. Part of that journey she will have to do without them. The destination is unknown, the person who arrives at that destination will not only look different, she will be an entirely different person. In many ways, this can be a positive thing, but it is, nevertheless, change. Change is difficult, threatening, and part of life. As we are rapidly learning, life is not fair, it is not just, it is not pretty, but we crave it and so we must embrace everything about it, including change. Greg Anderson says to water the seeds, not the weed. I will water the seeds of hope and healing. I will starve the weeds of despair. I do not do this as a denial of the cost, but as a privilege for being granted the right to live.
posted by Karen Weber

Here is today's link: Medscape Oncology Library. Medscape is a free service that I've been using for years. You do need to register a username and password, but the wealth of material here makes it more than worthwhile. Warning: this site is meant for doctors, so the reading is heavy, but if you want to know what you're doctors are reading, this is the place.
posted by Karen Weber

More reading to do: Skin-Sparing Mastectomy and Immediate Breast Reconstruction by S. Eva Singletary, MD, U of Texas, MD Anderson Cancer Center. The plastic surgeon the radiologist recommended did her training at MD Anderson. It looks like that's a good referral. I hope I can get in to see her. The free TRAM flap looks like a good reconstructive technique.
posted by Karen Weber

More on breast reconstruction options: Breast Reconstruction After Mastectomy from Oncolink.
posted by Karen Weber

To Reconstruct or Not to Reconstruct: That is the Question! - two oncology nurses share their personal decisions on reconstruction after the diagnosis of breast cancer.
posted by Karen Weber

OncoLink: Breast Reconstructive Surgery Options. This has a nice side-by-side comparison table of the major options.
posted by Karen Weber

A shorter reading, less technical: "A Mastectomy that Spares the Skin"
posted by Karen Weber

Here's a video report: OncoLinkTV: "Action News Healthcheck Report: Skin Sparing Mastectomy". If you have a slow connection, they offer audio only. This is an evening news report, so it doesn't contain much detail, but it includes a patient interview talking about the tradeoffs of the longer procedure/hospital stay/recovery for the benefit of better self-image/no future surgeries.
posted by Karen Weber

The Breast Reconstruction Archives at The Patient Advocate. Lots of information here. Of course, after looking around, access to most of the information is for members only. And they aren't accepting any new members. And they don't post an email address where a person can write to them about this policy. So do we want to bother with this site. No, we don't.
posted by Karen Weber

I'll be moving the current blog entries into an archive here on a weekly basis. I'll be making an archive button later today, but until then, there's the link.
posted by Karen Weber

NEXT: March 19 - March 25