Next Wednesday I graduate from one stage, the diagnostic stage to the next stage, the treatment stage of my breast cancer.  This stage starts with surgery, unless you count the needle biopsy I had since technically, they removed cancer cells to do it. (See, I’m healthier already.) Other than knowing that I have three appointments with three different physicians the following week, I don’t know what the steps will be after surgery. That’s because the surgery is part treatment and part assessment. And I suspect that a lot of medical treatment is like this, that in treatment more information is gathered and this informs successive treatment decisions. That’s what my job is like as well.

I cope best when I have concrete and active things to do and when I am able to rest and take care of myself. I am running out of these steps before I hit another misty patch of ambiguity. I’ve also finished the big pile of work that I needed to get completed during my last two weeks’ work marathon. Now I’m tired and my to-do list is not entirely clear. I find myself starting to get into “what if?” territory. “What if” I get radiation and I’m one of those people who gets fatigued for years afterwards. I wonder if my hair is long enough to give to Locks of Love if I end up having to get chemotherapy? If it were, then some good could come of cutting it rather than just waiting to lose it all. I think you get the picture.

So this started a couple of days ago and here is my plan to nip it in the bud:

1) I’m going to meditate for 10 minutes today after I finish this blog entry.

2) I’m going to stay off of the computer tonight to help me get a good night’s rest.

3) I am going to list all of the steps of cancer diagnosis and treatment that I have already completed so far. Even though I didn’t start out with a full check list, these are still steps I have gotten through and represent forward progress:

I have completed:three mammograms, 2 ultrasounds, 1 needle biopsy, 1 MRI, 2 blood draws, testing for the BRCA genetic mutations, and two results phone calls. All of this has entailed 6 trips to Swedish in the span of less than 5 weeks. Not too shabby. Lots, lots, more items will be coming to my to do list, but I’ve definitely made progress past square 1.

I’m so relieved. My genetic test results came back normal. Hooray! For my own self-centered reasons, I am happy because this means that removal of my ovaries will not be recommended. The genes (BRCA 1 & 2) put women at a 40% risk of ovarian cancer, in addition to the increased risk of breast cancer. Since ovarian cancer is very difficult to detect until it is fairly advanced, the 40% odds are kind of sobering. I’m relieved that my ovaries are “off the table” surgery wise.

The other reason I am relieved is that this means that family members, especially the young women in the family like my daughter and nieces do not need testing.

Hooray!

Okay, my surgery has been rescheduled for 6/27. (No medical problems, just logistics.) Surgery is at 9 am with a check in time of 6 am! Three hours! It’s not international travel, people!

John says they are just making sure I am too tired to accidentally eat anything on the day of surgery. Maybe he’s right. I say that they are making me wake up at an ungodly hour only to inconvenience me in their silly quest to save my life! (I kid, for those of you who do not entirely get my humor.)

As a psychologist, especially one who was a researcher for many years, I know a lot about probability. The efficacy of our treatments are assessed using probabilities. For example, in a study assessing the efficacy of a treatment for depression, the question for the treatment group would be, “How probable is it that improvements in the group that got the depression treatment were due to chance rather than from the treatment itself?” If the probability is low, less than 5%, it is taken as positive support for the treatment. I am oversimplifying here so that you don’t pass out with boredom before I get to my point.

In my clinical work, I work to select strategies that maximize the probability that a child will be helped. There are no absolutes. We can’t control other people, we can just look for the avenues where we have the best chance of influence and focus our efforts there. I also can make predictions about long-term outcomes for kids with particular issues but I can’t tell parents absolutely what the future reality will be. For example, I can tell a parent if he/she has ADHD, there’s nearly a 50% chance that any child he/she will have will also have ADHD. I can also tell them that if a child has ADHD, there’s about a 66% chance that he/she will have some other diagnosable condition. I can tell a parent of a child whom I’ve diagnosed with ADHD what the best practices are for treatment, for example that stimulant medication has an 80% efficacy rate. (I know that ADHD meds make a lot of people uncomfortable but if you wouldn’t mind, please don’t use my blog as a forum for expressing your views on this subject.) I can give a list of possibilities and sometimes I can even make pretty good predictions based on information I already have about the child but I can’t know for sure. In talking to parents about these numbers, I have to balance a tight rope of providing them with enough information so that they can make informed decisions, convey the information in a way that will encourage relatively quick action, but not scare them silly. This is a different balance for each parent, which can make it difficult if I am talking to two parents who have very different coping styles. It also depends on the child’s particular situation. Some situations are more dire and urgent than others. Oops, I’m blathering on and on again. Back to the main point.

So I know a lot about numbers, predicting, identifying risk and protective factors, treatment effects, etc. I also know that the numbers can be extremely useful but there is a balance between keeping myself knowledgeable and borrowing trouble. I will be getting my genetics testing results back in a couple of weeks. I know that my chances of having any of the genes is low based on probabilities for the general population as well as those based on my family history. I know the probability is low but I can’t tell you the exact number. And I’m not going to look it up in my notes from the genetics counselor. I have learned the hard way in my life that worrying about something I can’t do anything about is a recipe for crazy. When the time is right to get lots of information, you know I’m going to get lots and make the best decision I can based on the information that is available. So until I know what the findings of the test are and can develop a plan for dealing with it, I’m going to fight the urge to spin my wheels on the Internet or keep myself up at night worrying. Obviously, this will be harder as I get closer to the two week mark, but I’m going to do my best.

Wish me luck in keeping this balance between information-collection and sanity preservation.

So my phone alarm went off this morning as it does every month to remind me to do something very important. Is it to pay the mortgage or the rent on my office? No silly, it’s to remind me that it was time for my monthly breast self-exam. When the alarm went off, I laughed a little. What was I going to find that three mammograms, two ultrasounds, a biopsy, and an MRI would have missed? Then I thought, “What the heck? I’ll just do it and keep up the habit. Plus, lefty has not gotten nearly the attention that righty has gotten.” So I did my exam and not surprisingly I felt nothing, even in the area that has a known tumor.

So ladies, you will soon tire of hearing me say this if you haven’t already, be sure to get regular mammograms. Yes, they are awkward, yes, they hurt, yes, you may feel that you are the star of some really weird fetish film. Plus, almost all of us have given birth by the time we start mammograms. That’s a lifetime of awkward physical exams for each kid. Finally, for the 12% of you that will some day get breast cancer, all that boob squishing will likely save your life.

Yes, I know I turning into a zealot. I’m going to dye my hair pink, wear only pink clothing, and get a pink ribbon tattooed on my right forearm. Feel free to dodge my calls if this happens but don’t forget to get your mammograms.