Monday September 3 and Tuesday September 4

The leakage of blood and other fluid from the head incision continued throughout Monday and during the night, much to Susanne’s consternation. The home visiting nurse instructed her to put a thick pad on my head and tie it with a strip of gauze tied under my chin. Quite a fashion statement! Tuesday morning we called the hospital and got an appointment to see the surgical nurse. She looked at the incision, noted the presence of some cysts that she pressed on to discharge what she called serosanguinous fluid (containing purulent and bloody material), called in one of the residents for an opinion, and they concluded that there was no infection and that we need not be concerned. Within a couple of hours, all drainage had stopped. This was all a huge relief.

The nurse also indicated that I would be on the intravenous antibiotics for a minimum of 4 weeks (darn!!) and that initial discussion with the oncologist should take place soon. She was surprised that we had not already had this conversation because the Dr Sloan had already advised the oncologist, Dr. Einstein of my case. I was also advised that I could resume the out-patient rehab work and that they would be faxing the necessary paperwork.

On Tuesday, I returned to outpatient rehab and had another vigorous session focused on the right front shin muscle and increasing the overall strength of the right leg. I’m walking around the house without either the cane or foot/leg brace though. I just have to be careful to lift up my foot high enough that it doesn’t drag. I wear the brace and take my cane out of the house…although I keep forgetting about the cane and walking off without it when we are out.

I keep reflecting on how to approach this experience, and I’m consciously choosing to speak of having a diagnosis of Glioblastoma instead of stating that I “have” Glioblastoma or “have” cancer. The “have” becomes owning it, which can lead to being obsessed with or consumed by its presence. Having a diagnosis is a statement of fact that contains no ownership but is also not denial. I must acknowledge Hedy Schleifer for making this distinction clear to me in “Sacred Choices-Hedy’s Story of her Cellular Challenge with Breast Cancer” by Judie Chiappone [Note: She has great marriage-support materials too!].

On Tuesday evening, for the first time we attended the support groups (one for the patient and the other for family members) at the Gathering Place. In my introduction, I used the diagnosis vs. ownership terminology and it was immediately meaningful to many of the group members. I indicated to Susanne that it was a very good group, and I will find it to be a good place to find support in the future as things get tough. Susanne observed that in the last 6 weeks, I’ve gone through brain surgery, been diagnosed with Glioblastoma, returned to the hospital for repeat surgery due to infection, lost my driving privileges for 6 months, and my near-term potential for returning to work is low. Given all that, she was very surprised that I didn’t see reason for needing support right now. I agreed that I’d look at that and see what made sense to me for next week.