Archive for April, 2010

This cancer journey is strange in many ways, not the least of which comes from the unexpected details. I have been told that I am remarkably positive, despite my cold honesty about the ugly details of my treatment. I think if I am positive, it largely comes from my experiences with my step-brother. I know how much worse things can be, so no matter how challenging the physical or psychological parts of all of this get, I viscerally understand that the path I am taking is leading me to a cure and that is such an absolutely wonderful thing.

I have never thought of myself as a positive person. I have always thought of myself as a realist. I like empirical fact. I like the scientific detail. But upon reflection, I see I do tend to frame my experiences with a broad enough swath of reality to see my good fortune in almost any situation. In this case, I am absolutely clear that, as my seven year old has said, cancer stinks. But having curable cancer is so much better than having the kind that is a mystery to treat. Tapping into this positive part of my personality for such a long period of time is changing my understanding of who I am in the world.

Here is something I did not foresee: The endurance demands of treatment are at the root of a lot of the challenges. For example, right now, I am experiencing a number of physical discomforts, none of which are terrible in and of themselves. But the cumulative effects of chemo –– which give me nightsweats, hot flashes, fatigue, and neuropathy –– are now coupled with the discomfort of surgery –– limited mobility, pain, discomfort of the surgical drains. I have to sleep on my back, surrounded by pillows and wake up several times a night to either take pain medication or because I am soaked in perspiration. Having multiple discomforts makes it more difficult to tolerate any of the individual ones.

There are also unexpected gifts in all of this. I would never say that cancer itself is a gift, but the things I am learning about myself, my family, my community and friends definitely are. The unbelievable kindness of so many people constantly amazes me. When my husband and I went away for a little stay-cation before my surgery, a woman at his work gave us a gift certificate for a nice restaurant near the hotel we were staying at. I have never even met her, yet she was so eager to help us. When we were at the hotel, housed in an old train station, we came back from dinner to see a wedding reception taking place in the lobby. We curled up in a couple of lobby chairs, watching the celebration. The wedding band was playing in a room off of the lobby, and we bopped and sang to some of the tunes that floated overhead. The mother of the bride came over and introduced herself. She invited us to dance and partake in the open bar, so we ended up dancing 4 or 5 dances with the wedding party.

I never expected to become a minor cancerleberty. I have no idea how I came upon my alter ego of ChemoBabe. I know I started a blog because I had heard from a number of my friends that the email updates I sent out were very helpful in understanding my experience of breast cancer and treatment. I thought that if my writing was helpful to my friends, it might be helpful to others. I have since connected, via my blog and other social media, with people all over the world. Last time I checked, I had over 5000 hits on my blog. I also recently did an interview with a radio station in St. Louis. I was a featured health care advocate on a social networking site for people interested in patient issues. The support and outlet this has provided me has been a surprise. It makes me smile that I turned my cancer into an occasion for education, advocacy, and connection, again showing the depth of an aspect of myself that is more unexpectedly fundamental than I had realized –– my impulse to teach and connect through an honest reflection of experiences, a desire to look at what it means to retain our humanity as we move through institutions and how institutions might better support our efforts to remain human in their face.

As for my treatment, I am continuing to recover from surgery. Hopefully, I will get my last two drains out this week. One of them fell out prematurely, leading to a seroma under one of my scars. I had to slosh my way through a few days, as the nurse wanted to see if my body would re-absorb the lymph that was building up. By Friday, when my every move was followed by a sloshing sound, I went to get the scar catheterized and have a new drain installed. I was awake for the procedure, which was done by one of the kindest and most competent nurses I have encountered. Nonetheless, it was psychologically hard to have another bump in my recovery, watching her struggle to get the catheter in my apparently “tough skin” and having to resort to using a scalpel to open the wound wider to make the line go through. I cried softly, feeling weary of all of the pokes and prods and procedures.

In some ways, it’s not the stuff that you know you have to endure that makes this cancer journey so difficult. It’s the stuff that pops up unexpectedly. The funny thing is, the unexpected stuff is also exactly what keeps you going.