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.