Complex Care

Blue Cross called the other day. Now, generally, the insurance company doesn't call unless they are trying to get out of covering a bill, and since I still have quite a few bills in the insurance pipeline, this is what I expected to hear.


The reason they called was actually far less ominous, and far more unexpected. They were calling to ask me if I'd like to enroll (at no additional charge) in their Complex Care Program. This program, for people with varied and complicated medical issues, provides additional support and information to help patients make care choices and get background on different therapies, drug side effects, etc. On the surface, this sounds like a great program, and after talking with the administrator and then the RN assigned to work with me, I think it is a very helpful service, but the whole idea that I popped up in Blue Cross' database as someone with complicated medical issues is just a bit disheartening.

I've never considered myself a sick person before! I considered what happened to me to be an aberration, Randomness! It also hadn't occurred to me that my insurance carrier would tag me with all those sick people who have diabetes and heart disease and, oh yeah, cancer.

So, in the interest of information gathering and seeking out answers wherever I can, I signed up. I now have a case nurse (R.N.), Debra, who will call me every 6 weeks or so and if I need, I can call her anytime I have a question. She can also call in a pharmacist to help with any drug interaction or side effect questions. Debra is scheduled to call me just before my 3-month follow-up next month to go over what I should expect the oncologist to do and to answer my pre-scan freak out questions before I see him.

So, despite not being thrilled with the label of "sick person", I'm going to give this a chance. There are SO many things to hate the insurance company for, maybe this can be something they can do to help in real, tangible ways. I'll let you know after I talk with Debra next month!

More Randomness

Last week my husband came home with a box for me. The wife of one of his colleagues sent it. Inside, was a quilt, made of patches of what I can only call "breast cancer design". The whole quilt is covered in pink ribbons on various pink backgrounds. My first response was "What is this woman thinking!?" I understand that many women get into the pink ribbon thing after they are diagnosed. But, after hearing about all those "brave breast cancer survivors" this October, while I was still wearing drains and dealing with healing from the mutilation where my breasts used to be, I have not yet become a big fan of the pink ribbon.

Friday night, at my husband's company Christmas party, I met the woman who sent the quilt. And I ate crow.

First, she is 35. She was diagnosed with breast cancer at 32 (what is going on when a 32-year-old gets breast cancer?!!). Margo is a very cool, working mom, who sees power in the pink ribbon because she feels like her life was spared. Here is her story:

Margo never wanted children. But, after she had her son, she loved him with all her heart. And she developed an Adenoma (non-cancerous tumor) while breast feeding. Because of the Adenoma, her doctor had her get a mammogram. Immediately after her mammogram, the radiologist did a sonogram and ultrasound, on the opposite side of the Adenoma. There, they found a large area of DCIS (Ductal Carcinoma in Situ) that was just about ready to burst and become full-blown invasive cancer. So, with her infant son at home, Margo underwent a lumpectomy and 10 weeks of radiation.

In her own, very matter-of-fact manner, Margo explained that she is grateful for her son. Without him, she would never have breast fed and never developed the Adenoma, which led her doctor to discover the DCIS just before it became life-threatening. She now sees her surgical oncologist every 6 months and has mammograms, years before she ever would have without the cancer.

Like me, Margo has no breast cancer in her family, no pre-existing condition or activity that would say "breast cancer at 32". Randomness is all that makes sense for her as well. And every time I look at the quilt, it is her strength that I'll think about.

Depression and Cancer

After my mastectomy, my surgeon was very forthright with me about the incidence of depression among her mastectomy patients. She said I would likely become depressed and she stressed that I should get help if I needed.

So far, I have been very fortunate in that I don't think I've experienced the level of depression she talked about. Anger, yes and generally being ticked off about the whole cancer-thing, yes. But depression, at least that I recognize as such, no.

However, I'm learning more and more about the emotional toll that cancer takes on the individual. I've become a regular reader of Kris Carr's blog, http://crazysexycancer.blogspot.com/. Yesterday, she had a guest blogger, Terri Cole, who is a therapist and cancer survivor.

Terri gave a very clear, thoughtful discussion about cancer and what it does to our spirits and talked very openly about what we can do, every day, to keep depression at bay. One of the items she talked about was the inner messages we give ourselves every day that can either build us up or tear us down. Women in particular send ourselves negative messages about our bodies, our personalities, and our spirits. Things like "I'm so fat", "No one could possibly like me", "I have nothing of value to offer" do such damage to our own psyches and impact the ways in which we interact with our families, friends and colleagues. Keeping those messages positive, "I am strong", "I have a giving spirit", "I am a loving friend", can impact our outlook in a real way each day. Even if we don't feel these things all the time, even if we don't totally believe them all the time, they can help us to see ourselves more clearly, and perhaps more the way our friends and family see us.

Yesterday, I had a long talk with a very old friend. We've been friends since the 6th grade, so she knows me better than most. We talked about how I am doing living post-surgery and within the land of cancer drugs. She sounded so surprised when I told her I have not yet gotten prosthetics that I wasn't sure what to make of her reaction. I tried to explain why I haven't yet been fitted, but even I didn't like my reply. Being the wonderful friend that she is, she told me that if I never get prosthetics, I am very brave, if I choose to wear them, I am equally brave, and if I have the surgery, I am also brave. It is a good friend who accepts and supports all of your decisions!

I still had to think about why I haven't made that call. For awhile my ribs were too sore. They are no longer sore, so that really isn't a good excuse anymore. Does it have to do with depression issues? Am I depressed to the point of not being able to move forward? Am I afraid of what getting prosthetics means?

And what does it mean? Am I giving in to society's expectation that all women have breasts, or am I acknowledging that I am damaged, not whole without breasts? or is it really what I told her, that I just don't want them and I don't think anyone even notices.

I want to believe that I am ok with how I look now. In reality, I'm probably not, but I want to be. And I really want to be ok with what happened to me before I make the next step. Maybe it has nothing to do with depression, but it does feel easier to think about these things if I give myself a positive message that a friend shared with me, "I am brave", even when I don't totally believe it.

Is there a right way?

I had two conversations this week that made me worry about how I've dealt with the cancer. One was with a dear friend, the other was with my mother. Both love me and want the best for me. They are both concerned that I haven't really made any changes in my life after the cancer and surgery. I haven't really done this cancer thing right.

So, following on their concerns, I did some research. According to the sites and articles I looked at, after cancer, one is supposed to do one or more of the following:

• Change your diet
• Change your exercise routine
• Cut back on work
• Cut back on social obligations ("Learn to say no")
• Start taking yoga or pilates or meditation classes
• Take a vacation
• Take up a new or long-desired hobby or avocation

That was discouraging. I haven't done any of those things. I work a lot, I kept the same diet I've had for the past 20 years, I exercise as many days a week that I can given my husband's and children's schedules, and I try very hard to keep up our social obligations.

I work because I have to, I take care of my husband and children because I love them, and I try to keep up with our social obligations because I want our family to be active, engaged members of our community. Cancer has to fit into that life. Right now, at this point in our lives, I don't have the time, money, or opportunity to change my life because of cancer.

I suppose if I knew why I got cancer in the first place, I'd be able to change that thing. But, since I've never smoked, I don't drink heavily, I've been a vegan for the past two decades, and I've exercised regularly for years, I don't know what to change to keep from getting cancer again. So, maybe I'm not doing the post-cancer thing right. But then again, no one gave me a guide on how to deal with having cancer, so I'm not sure that there really is one "right" way to live post-cancer. At least not right now.