Encouragement from a Young Friend...

I received this email from a friend of my 34 year old daughter. She gave me permission to put it up on my blog. I wanted to pass it along mostly because of her generousity and also her youth. Breast cancer can still be an concern no matter the age of the woman:

"I wanted you to know I am reading your blogs. Even though you don’t get comments, don’t stop. Most of the time when I come across something relevant I usually don’t comment, even though it was helpful. It may be something about privacy, fear, or just because someone was reading through tears. Your blogs are worth maintaining. I have not had very much time since we are moving so I’m reading a little at a time. It is also a little hard to read in large doses since I can completely identify with the feelings. It is very scary. My best description is feeling claustrophobic in my own body. I really would have crawled out of my own skin had I been able to. Keep up your work. When you get discouraged remember, you matter."

This email was written by a young, 35 year old woman, who is in good health. Thank you for sharing your thoughts, my friend.

My friend's mastectomy went well...

Today at 12:30 noon today, my friend had her mastectomy. She got out of surgery, she said, at 4:30 PM. I talked with her about 7:30 PM. The first thing she said, on my answering machine, was that her sentinel lymph nodes were clear! That is the best news because that means the cancer hasn't spread anywhere else! I was so relieved I felt like crying. It was so great to talk with her later when I called her back.

The hospital where she had the surgery is keeping her for 2 nights. I only stayed in the hospital 1 overnight. I'm pointing that out because that just shows you, there is no one right way on this cancer surgery thing!

I am so relieved!!

Distractions and Difficulties

I haven't written in over a month, my excuses are pretty good. As are all excuses, of course. Anyway, good for the excusee. First of all, my husband and I bought a 36' 5th Wheeler out in the desert. We go out there two days a week, Thursdays and Fridays and return on Saturday mornings, in time for me to go to work, 8 AM. That may not seem like much, but it sure takes a bite out of my week. But it's just too much fun not to go out there. It is so peaceful! We love the quiet! Okay, that is my distraction from writing.

The difficulty is that my work, the hotline, has employed an corporate Nanny to monitor all our internet usage. They have blocked me from my blogs!! I was shocked and annoyed when I discovered I couldn't go to my blogs from work!

Maybe the real reason I haven't written is because it is diffult to write about my breast cancer, especially since my friend and I talk about it and it brings up just exactly how traumatic it was. She is getting closer to her surgery date, July 31st, I believe. Her surgeon will be Mary Wilde, as I mentioned in an earlier blog. She has a different plastic surgeon, one recommended by Mary Wilde. I can't wait to see how her's turns out.

She had several traumatic days because of a report by one of her MD's who wrote that her kind of breast cancer was the invasive kind and that her tumor was 11 CM. Her other MDs reassured her that that was not the case. Brother!! What was that MD who gave her such a terrible report thinking?

Where DID they get the word mammogram?

I've been saving this quote for years. Jan King (I don't know who this is either, but I like the quote) said it, "Every time I hear the word 'mammogram', I think I'm supposed to put my breast in an envelope and send it to someone."

Medical Rage!!

Medical Rage is like Road Rage in that it is an extreme reaction to a very frustrating situation in which the Raging person feels helpless to change the situation. One of the biggest differences is that Medical Rage is usually privately expressed by normally well-behaved men and women, while Road Rage is expressed in public, available to many on the road who may also experience some of the consequences of the Rage, such as car accidents, dented fenders, etc.

This morning my friend whom I shall call Sharon, called to say that although she had been told by her doctor on Friday that she had pre-cancer breast tissue, it turns out that, in fact, it is DCIS breast cancer. She was crying, raging angrily, helplessly. She wanted her doctor to tell her the truth about her situation, not minimize it!! I certainly understood her rage and her feelings of helplessness. It is at these moments that we want to hear the truth from our doctors!!

Have you every experienced rage because of a doctor minimizing a diagnosis? Write a comment and tell us about it. I know we aren't the only ones!

The Mix of Confusion and Horror after Breast Cancer Diagnosis

A young, almost 50-year old friend of mine called me the other day saying she has been diagnosed with pre-cancerous breast cancer. She had had a benign lumpectomy several years ago and her mother had died within 2 months of diagnosis of breast cancer that had metastisized to her lungs. Needless to say, my friend was shocked and scared.

I referred her to Mary Wilde, MD, Director of Scripps Polster Breast Care Center that I mentioned in an earlier post.

She called me back a few days later to tell me she had had a Mamo-test. I could tell she was in that state of After Diagnosis Confusion and Horror, magnified by her mother's experience and death.

I realized I hadn't written much about that time because it is just such an awful period. I didn't know what the right thing to do would be. Should I really have a whole breast removed??? Is that the right thing to do if I have DCIS, Stage 0? Who would know? I had read the literature about how there were too many mastectomies being done, that doctors were too eager to do them, etc. Then there was the issue of the right breast. There were little spots showing up in the MRI that may be "false positives". I had read enough to be somewhat paranoid about whether doctors would do the "right" thing.

I would go to a doctor's appointment and we would talk about whatever I was there for and then when I would get home, my partner (now my husband) would ask me about it and I wouldn't be able to remember what the doctor had said. Finally, I started taking a tape recorder with me to the appointments. Surprisingly, many doctors didn't want me to tape record the appointment. When I asked why, one of them said something odd like "people who tape record the session don't listen carefully in the session so they don't ask questions. They think they will listen to the tape of the session." Frankly, as confused as I was, I accepted this silly answer and did not insist on recording the session.

Taking it one day at a time was the most helpful, but not easy. I tried to "stay present" in my confusion and despair, but it was difficult because it felt like I would feel that despair forever. I guess that is how I feel hearing my friend talk about her situation and where she is in her process.

I have to say that the despair does pass at least on the surface. I cry easily when I talk about it, so I don't know that it is really gone. I'd love to hear from other breast cancer survivors and their experiences after they were diagnosed. If you know of someone, please have them email me or 'comment' here on my blog.

I am Grateful Anyway

In my profile, I mention that having had breast cancer changed my life in "so many ways." Every time I read that, it jumps out at me that I want to write specifically about the ways it has changed my life.

These are some of the ways the breast cancer has changed my life: I am now scared to death of mammograms-not because of what they may find, but because of the pain of being squeezed so tightly. Both of my breasts are still very sensitive to pressure. I will not be able to under go another mammogram awake.

I no longer can maintain the innocence (denial) of "those bad things don't happen to me." They do and they will and we can live through them.

I no longer take for granted having two nipples. I know that's kind of funny/odd, but it's true. I'm going to get some nipple petals from J.C.Penney's--they have them there, you know. Check out my friend's blog, domesticirritation.com, Not my husband's Favorite Flowers, then click here for information about where to buy the Fashion Forms.. That way, I won't look like my breasts have one eye closed when I'm wearing these "breast petals." Really, that's what they are called.

I am grateful that my friend called me for support a couple of days ago after her MD told her she needed a Mamo-test, which is what I had instead of a needle biopsy. The Mamo-test is done when the cancer tumor is so small the can't just aim at it with a needle. The Mamo-test has a needle about the size of a #6 knitting needle with a tiny camera on the end of it and they go into one's breast and look around for the cancer cells.

Actually, the procedure itself not painful, thank heaven, it's just damned uncomfortable and you keep waiting for it to be painful so you stay tense for the whole procedure which can take from 45 minutes to 2 hours.

"60 is the new 50" Hah!

No, sixty is just 60! and I'm even more than 60--63, to be exact! Today is my birthday! Actually, I feel pretty good for 63. But don't let anyone tell you that turning 63 is like being 53 'cause it ain't! For one thing it's harder to recover from things when you are older than 60.

I have had lovely calls from my daughters and my friends today, all wishing me Happy Birthday. Of course, my Wonderful Husband took me out to dinner last night. I am working tonight on the San Diego Crisis Hotline so he can't take me out tonight. Then when I have off on Friday, he is going to take me out to another, fancy restaurant, Donovan's, so that should be fun! It's supposed to be one of the top 3 restaurants in San Diego. He took me there once before and it was delicious. I'll let you know next time.

The End of Denial...

Actually, it's two years later and I'm still wondering if I am out of denial. It was difficult to write the previous post. I think that's one reason why I both want to have this blog, to connect with other women who have had breast cancer and/or have had other plastic surgeries whether restorative or elective plastic surgery.

To continue from my previous post, I had the Mammo-test and the biopsy was malignant. Of course, they didn't tell me that then. I had another appointment with my surgeon, Dr. Tanaka at Scripps Clinic in Encinitas. She was the one that told me I had DCIS, the "best breast cancer you can have if you have breast cancer" she told me. Best because it's the non-spreading kind, she said. But, unfortunately, you have it in three sites, she said. Therefore, we advise you to have a "skin sparing" mastecomy.

By this time in the process, I had been researching breast cancer on the internet, on http://www.amazon.com and it turned out that my boss, Marcia Ayers, at work had had breast cancer over 5 years earlier and loaned me an excellent book and was very helpful and compassionate. By the time, I was going around in a stunned fog. I did learn enough to know that I should have a second opinion about whether to have a lumpectomy or a mastectomy.

I was referred by a friend to Mary Wilde, MD, Medical Director, Scripps Polster Breast Care Center. I took her all the images from Scripps Green/Anderson Outpatient Clinic, all MRIs, Mammograms, etc. She looked at them and advised me to have a skin-sparing mastectomy. I burst out crying, like I hadn't heard that before! Fortunately, I had taken a lovely, close friend with me, Vincentia Schroeter, Ph.D., a psychotherapist friend. Both women were kind and compassionate. I went home and told my loving partner about it all. He was great! And he stayed great throughout the ordeal, I'm grateful to say. BTW, we are now married. But more later. I have to take this in small doses.

Life Goes On...

I have to admit I've had so much going on with the several restorative surgeries I have had since being diagnosed with DCIS breast cancer, stage 0, that I haven't been back to update this site. I was new to blogging when I first started this blog, and I was disappointed because no one commented so I didn't continue.

I wish I had because one of the best things about blogging, other than comments from others, is that you get to see how you felt about things that were going on for you--just like in a journal. Only this is a public journal.

So here's what's been going on for me since October, 2005 when I was diagnosed with DCIS breast cancer. See http://www.breastcancer.org/dcis_ductal_carcinoma_in_situ.html for general medical information on DCIS. Now this is where I wish I had been writing this blog all along, but I guess I wasn't up to it at the time.

First of all, it was mostly shocking to be diagnosed with breast cancer. I was in a state of shock for months. First I had a mammogram. A couple of days later, they called me back to say there were some places they wanted to examine closer. Well, that was no big deal, I'd had that happen before. I went back for the 2nd mammogram and they also did a sonogram on the left breast. Then they decided I should have a "Mamo-test" which I was unable to learn anything about on the Internet.

Within a week, I went for the stereotactic mammogram, which is what the "Mamo-test's real name was, I learned. This was a hard table with a hole in it, covered in fabric, but not really soft. I laid down on the table with my left breast hanging through the hole. No medication, no Xanax. A female radiologist and her assistants came in to explain the procedure. There I am, frightened to death, they are explaining what they will do, which consists of a tiny camera placed on the end of a tiny tube that they are going to put into my left breast, all without medication. Actually, it did not hurt, but it lasted about 2 hours because it turned out there were about 3 different sites of the cancer but each site was tiny. This was the biopsy. I was stressed to the max for 2 hours. Just to show you how little I knew at the time, I said, "They don't do radical mastectomies anymore, do they?" They said, "well, uh, yes they do, depending on the cancer." "Oh," I said in a tiny voice.

At that time, they weren't telling me much about my cancer. The next step was a consultation with a Oncologist. I was still pretty much in denial. Things like breast cancer don't happen to me, was I in denial!! More to come soon, I promise.