My Diagnosis of Cancer

I wanted to give everyone an update on things regarding my diagnosis of cancer, as I am getting enough inquiries that it's hard to keep writing the same info over and over. Please forgive me for writing to you all en masse. It's just quicker and easier this way.

I had my first meeting with my treatment team (or at least a part of it) the day after I was diagnosed--which means it was on Wednesday. My friend Cathy went with me to be an extra set of ears and to take notes for me, since I imagined that I would be apt to miss some of what was said or I'd forget to ask pertinent questions. Cathy is a professor in the School of Public Health at UNC. She specializes in studying cancer prevention strategies and is also interested in how we can reduce the time lag between discoveries in research and the application of those discoveries to public health issues. Because of her research interests, she knows a lot of people in the cancer treatment part of the hospital and is pretty familiar with the system there. She has been an invaluable asset to me in all of this, both on a professional level and just as a friend and a caring person.

There were three big things that happened that day: I saw my medical oncologist, I saw my surgical oncologist, and I got my first blood draw. The medical oncologist was a nice guy. He said he'd had 50-100 inflammatory breast cancer patients in the course of his career (not all of it here at UNC) and he imagined (but did not know) that his success rate with them was about the same as the national statistical average, which is 30-40%. He said that this figure is based on meta-analyses that are about 10 years old, so it is dated information. Treatment protocols have improved in the last 10 years, and he believes that we now save closer to 50% of all those diagnosed with this form of cancer.

He explained the basics of my treatment plan, noting that some of it is still up in the air because we need more imaging studies and were waiting for the complete pathology report on the tumor. We discussed the two things that are vitally important to me, as a patient, in putting together a treatment strategy: mammography issues and nutritional approaches as adjunctive therapies. He was willing to work with me on both counts. He seemed very willing to sit and talk with me for as long as I needed, and I appreciate this.

One of the people that works with him is a "patient advisor." She's on my case. When she introduced herself, I thought her name sounded familiar. As she explained to me later, our paths have crossed before. A couple of years ago she contacted the Employee Forum about a work situation that she and her colleagues were facing. I was on the Forum at that time and so I did some research into the situation and then wrote up an article about it for the employee newsletter. I had forgotten about that.... I asked her how it had turned out, and she said that the administration had dropped what they were planning to do after I helped bring those plans to light. She said she was sorry to meet me in this way, but was glad she would have a chance to repay the favor. I thought this was a very good omen.

The meeting with the surgical oncologist was not as warm and fuzzy, but it was informative. I learned about what a mastectomy is like, why they need to take lymph nodes too, reconstructive surgery options, etc. Surgery is probably about 4-5 months away for me, so I imagine that as the time draws nearer I'll have more meetings with her and get more info.

Then I had blood drawn. Turns out the phlebotomist is an 8-year survivor of breast cancer, too. She was diagnosed with Stage IV cancer -- which is the final, terminal stage. Today, 8 years later, she remains cancer free. She had a mastectomy, too, so we talked about that a little bit. This was a very nice encounter.

Another very nice thing happened that day. A radiation oncologist there has a son with autism, so I have known him distantly for years. When I began to suspect I might have breast cancer, a friend connected me with this man, and he and I have been engaging in a rather active email conversation for the last two weeks. After I finished my medical oncology consultation, I began trying to get some appointments made for the extra imaging procedures I need to have done. This big man was standing around behind me, and when I turned around I saw his name tag and realized it was him. I gave him a hug, in gratitude for all the help he has given me just by talking with me, even when the conversation got a little animated. Then I immediately burst into sobs. He just stood there and held me and let me cry for a minute. It was so kind.....

On Thursday a friend went with me to Virginia to a place where I got a thermal image of my torso and breast. The thermal image is not used in traditional medicine, but it claims to be a useful indicator of where angiogensis is occuring in the body. Angiogenesis is blood vessel formation, and cancers tend to form a lot of blood vessels around them. It doesn't take a rocket scientist to look at the images and be able to see exactly where my cancer is. The good news is, the thermal imaging indicates it has not spread to my lymph nodes and there is no cancer in my other breast. We'll see if my CAT scan and MRI at UNC wind up saying the same thing.

I also learned about some nutritional measures I can take as adjunctive therapy while I'm undergoing treatment. I have to do some more research on those suggestions and others that some of you have sent to me. My friend Cathy is helping me do this. While she is very well connected to the cancer treatment system at UNC, she is also kind of "alternative" in her own way. She is open to alternative therapies as long as there is some reasonable degree of evidence for their efficacy (and because she is a personal friend, I also know she is very open-minded about other kinds of things), so I trust her to help me do this research in a fair way.

The trip to Virginia was also an opportunity to spend a lot of time processing feelings, ideas, hopes, fears, etc., with the friend who went with me. We did a whole lot of that. My initial response to the diagnosis was some tears, some anxiety, but a lot of stiff upper lip and getting about the business of getting tests, arranging for my care while I'm taking chemo and having surgery/radiation, etc. Not everyone could stand to spend 36 hours with a person who has just been diagnosed with a Stage IIIB cancer...but she did wonderfully. She is a real medicine woman.

By Thursday afternoon other emotions were emerging, and a lot of them were not pretty. I've spent the entire 4th of July weekend engaging those emotions. It would seem I have a sort of PTSD situation going on, rooted in a six-week hospital stay that I had 50 years ago. Like today, I was critically ill then and did, in fact, almost die. The doctors saved me, but the whole situation left some pretty deep emotional wounds that have been mushrooming up for me. Needless to say, I'm going to have to get some therapy to work those through so that they do not needlessly hamper the efforts of my current doctors to help me.

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Do you remember the song on the radio that has the tag line, "Someday I hope you have the chance to live like you were dying"? Well, today I do. It is a rare gift. I wouldn't wish this on anyone. But if you are in this situation, there do seem to be some gifts that come with it.

The first gift is the outpouring of concern and support that you all have given to me as you heard the news. You have no idea how that has made me feel -- how supported, how loved, how treasured. How humbled. I find myself thinking that I have not been nearly a good enough friend, in the past. That I am getting much better than I have ever given. I know I need your help, your support, your prayers, and I accept them with gratitude. But I still have to wonder what I ever did to deserve this much good will from so many people.

The second gift is realizing that there is a wellspring of "good" out there and that I have been lucky enough to be able to tap into it as I begin this journey. My friend Cathy and her expertise that I can draw upon. The radiation oncologist guy who has been patiently talking me through a lot of this via email. The patient advisor. Most of the medical staff at the hospital. Friends from the University who are trying to help me get enough sick leave time (donated to me) so that I won't lose my job because of this.... These are good things. My parents, who within 24 hours had made arrangements to come down and stay with me to help for as long as I need..... Good things.

A friend here lately has been accusing me of being an optimist. I have loudly demanded that she quit insulting me like that! I am an Eeyore, born and bred! But it does appear that, oddly enough, this experience may be releasing a bit of the inner Tigger in me. Who'd a thunk it?

The third gift is personal insight. Having a potentially fatal cancer is causing me to focus on what I'm doing and where I'm going with a different kind of clarity. I'm not sure it's "ultimate" clarity...it's too early in the process for me to know that yet. But I certainly view the issues I was dealing with before my diagnosis in a new light today. This is, in an odd, back-handed kind of way, a real learning opportunity for me. I hope I maximize it.

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So far, I have four main orientations to having this disease. First is the organizer-me, trying to organize my medical records, organize my care strategies, organize my treatment plans (especially the supportive treatments that I will control more than the medical folks will), etc. This is the stiff-upper-lip mode, and it has been working well for me.

Second is the off-the-charts-anxiety-and-anger me, directed not at the cancer or the unfairness of my situation, but directed at what all of these medical people are about to do to me, what kind of information they are going to share with me, just exactly *when* they thought they were going to share it, etc. This is the PTSD stuff. It's not pretty.

Third is the lower-level, generalized anxiety and depression about having cancer at all. I haven't experienced a lot of this yet, but it has emerged from time to time for brief periods.

The fourth is the orientation that has surprised me the most. It emerged early and has remained steady, though it does get swamped with all these other things and I lose sight of it. When those other things abate, though, and I can access that calm, inner core of my being, this is what comes through: I am setting off on an adventure. A journey. A hero's journey, in mythical terms.

At some level, I believe I have known for years that this was going to happen. This is not some random bit of bad luck. It is a very choreographed event in my life. I've been preparing for it. Unconsciously. But I have in some sense known that something like this was going to happen.

And now, it is here. The battle is engaged. The only real response is to fight that battle. Not just a battle on the physical front, though it is certainly centered there. It is also a battle at a higher level. There is amazing growth potential ahead of me. If I can tap into it. I don't know how successful I will be. It will be very, very hard in ways that I can scarcely understand right now. But I know I'm ready to try my best. To give it my all.

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As the days have passed since I was diagnosed, I try to start and end each day by thinking about one or two things that have been good. Things I'm grateful for, or happy about. Today I called my new daughter-in-law and got her voice mail. For the first time ever, I heard her refer to herself as "Michelle Denzler." That made me smile. It's the little things. The fleeting smiles. They are nice.

And as the days have passed since I was diagnosed, I try to spend some time lying on the couch and actively opening myself to the energies of the prayers and good wishes that so many of you have told me you are sending my way. My couch is bathed in natural sunlight from a SolaTube that a friend gave to me a couple of years ago. I lie on the couch and imagine the healing energies of your love and concern, collected like a big swarm of fireflies in the tube, now radiating down around me and melting on my skin as they make contact and enter my body.

Things could definitely be better. But then, things could also be so much worse. :)

(Darn! There goes that inner Tigger again!)

Brenda