Decisions, Delays, and Dads

I've been having a good visit with my Dad and brother Ari (see the picture of us three baldies!). We've been doing a lot of cooking and eating, exercising, hanging out with Sam & Sarah, celebrating Fathers' Day, and reading aloud together. We had a brief scare when Don's dad was taken to the ER in Indianapolis yesterday, but they sent him home without finding anything new wrong (he is nearly 96 and has a lot of issues already -- including some memory loss, which means he already doesn't remember the trip to the hospital!).

My energy has continued to improve gradually. On Saturday Don & I went for a walk all the way to the new polar bear exhibit at the zoo, then waited in the Herpetarium for a rainstorm to pass before heading home -- I was glad for the rest and very tired when we returned, though before cancer this ~1.5 miles would not have been at all difficult. Sunday Dad, Ari & I went out to the Goodman pool in Verona for a swim and met Don & Sarah for dinner at Liliana's afterwards, and Monday I did two work meetings and walked to acupuncture & back (1.2 miles) with only a brief nap on the acupuncture table and was not tired until bedtime. And this morning before heading to chemo Ari and I went to Capitol Lakes for a swim, and I swam for a full half-hour, before breakfast!  

While the gradual improvement in energy is probably mirrored by and influenced by gradual increases in my blood counts, the latter are still quite low, so much so that after waiting around for an hour and a half after my blood draw this morning, they finally told me that they were too low for me to get my scheduled chemo treatment today. For those tracking, my hemoglobin was up to 9.0, my ANC at 870, and my platelets at 62. The hemoglobin is not a problem -- that's what the blood transfusion last week was for, and if it dips lower again they'll give me another one. However, I'm already taking shots to stimulate the regrowth of the white blood cells (ANC), and they don't want to transfuse platelets unless absolutely necessary (count of 20 or below) because, apparently, this can cause a person to become unable to produce their own platelets and thus dependent on transfusions. 

It's not at all uncommon to have to skip a Taxol dose due to low blood counts on the Carboplatin/Taxol chemo regime I'm on, but skipping this week could end up meaning I don't go to clay camp in July.... my doctor and nurse are still scheming about how to make that possible without deviating too far from the protocol which has been shown to be effective (scenarios include me getting a blood test in Dodgeville WI during clay camp and driving back to Madison for a treatment if my counts are high enough; and/or delaying the end of my treatments by a week to skip that week also). 

In addition to our other activities, Dad, Don, Ari and I and have had several good conversations about my cancer and its treatment. It’s been a long time since I’ve relied on my Dad’s brilliantly intelligent, well-informed and strongly-held opinions to help me make decisions. As a young adult, I pretty much stopped asking his opinion about things, because my confidence in his thinking was so great that I couldn’t figure out how to have an opinion that was different from his. Ari, though equal to Dad in brilliance, is considerably more soft-spoken and is my younger brother, so I didn’t have as much opportunity to become defensive in the face of his opinions as I did with my father.

Although even Dad admits that his own decisions are not always rational (for instance today he admitted to a lifelong refusal to eat tilapia ever since they were his research subjects several decades ago), my Dad is a scientist of the highest-order, anti-humbug variety, and always demanded good reasons and hard evidence for my beliefs. My childhood inclinations towards exploring ESP and the like were subject to harsh critique, and my adult explorations of spirituality have been treated with a polite but nonplussed agreement to disagree. So, I’ve been pleasantly surprised this week at how non-reactive I have felt to Dad’s inquiries about my decision-making process about the lumpectomy vs. mastectomy decision.

Although I’ve been leaning strongly towards mastectomy without reconstruction for many weeks, and had an awesome alignment coaching session around the decision with Robert Gass a few weeks ago when I thought it was “time” to make the decision, I actually decided to give myself more time and to gather more information before finalizing the decision. There were several reasons for this decision to delay the decision. One was that a member of my congregation emailed me to say she’d drawn an “angel card” (sorry, Dad!) on my behalf, and though usually when she draws them they are simply positive and reassuring, this one told her I was confused and needed to consult experts before making a decision. (While normally I would ignore such random and unsolicited advice, something in this obviously must have resonated for me). Another reason was that I wanted to meet with my surgeon again to see if she had anything to say that might alter my views before finalizing my decision. A third was that on our mini-vacation I read part of a book on the AirB&B’s shelf called Wait: The art and science of delay, which suggested that in most cases it is better to wait until the last possible instant before making a decision, because the more time passes, the more information becomes available.

So, I have been delaying. For the first time since my diagnosis (and since my oncologist warned me not to read too much about my disease), I’ve been reading about my prognosis (Surviving Triple-Negative Breast Cancer, a book brought to me by my next-door neighbor, who curates the regional Susan G. Komen collection at the Monona Public Library). I have also been exploring yet a third treatment option suggested by the surgeon, lumpectomy with breast reduction. And, this week, I’ve been discussing the decision with my dad, brother, and husband.

More than just being non-defensive, I have felt grateful for the gentle, intelligent discussions the four of us have been having about what the factors are in my decision, including trying to figure out together what is and isn’t known about cases like mine (despite the plethora of breast cancer cases and advances in research, when you break it down to pre-menopausal, triple-negative, BRCA-negative, bi-lateral cases, there isn’t much data). I was actually relieved to hear that my dad, who just retired from a varied scientific career which for the last few decades has focused on the psychology of statistics and the social science of decision-making in risky/uncertain conditions, agreed with my initial assessment that the fact that I have cancer in both breasts simultaneously is very likely to mean that a third occurrence is more likely if I keep my breasts.

Although it has echoes from my childhood when I felt I couldn’t make a decision without first consulting my dad, ultimately it feels very good not to be alone with this decision, and to have him, in particular, on the team. Though he will no doubt quibble and/or have serious corrections to this narrative, I think I’m going to resist the urge to have him review this draft before I post it.