Our Cancer Journey – Week 6

We’re halfway through the most challenging cycles of chemotherapy, Kathy has lost her hair,  and her fatigue is getting worse but her mood is still very positive.

On Friday January 20th, Kathy received Cyclophosphamide (Cytoxan) 1200 mg, Doxorubicin (Adriamycin)  120 mg and her pre-chemotherapy supportive medications Fosaprepitant 150 mg, Dexamethasone 12 mg and Ondansetron 8 mg.

She tolerated it well.

Her Complete Blood Count shows that her Granulocyte Count has dropped from 6690 to 3610 since the chemotherapy affects her fast multiplying white cells as a side effect of targeting the cancer.   Her hematocrit has fallen from 42 to 32.   She tires more easily but her appetite is good.   Small frequent meals enable her to overcome any GI symptoms.

We’ve been told that the Adriamycin/Cytoxan is the most difficult chemotherapy.  Only two more cycles to go.

The photograph above shows Kathy and me at age 21 in our Stanford graduation photo.  She’s always had long, luxuriant hair, even a waist length braid at one point.

On January 21st, her hair began falling out in clumps.   It was not exactly painful, but felt very odd, as if her hair had not been washed in months and just did not lie on her scalp properly.   In consultation with her cancer survivor friends, she decided to shave it off.    Her hairdresser gave her a “GI Jane” cut realizing that the small hairs left will fall out soon, but in a more manageable and comfortable way.    I seriously considered shaving my head in solidarity, but she asked me not to.

She’s wearing wraps and hats to keep her head warm in the chill of winter.   The colors and shapes of her hats give her an artistic and vibrant look.

Dropping blood counts, lack of energy, and no hair may sound depressing.   How have we supported her mood?

She’s avoided caffeine, alcohol and mood related medications.  Instead she’s remained positive because of the weekly activities we’ve planned and the future we’re designing that goes beyond the statistics of 5 year survival rates.

In my professional life, I’ve written extensively about SOAP verses REST as standards for transport.   In my personal life, Kathy and I have explored SOAP as Rest via a course on traditional soap making from Back Porch Soap.   We’ve really enjoyed the art and chemistry of saponification, creating our own cold process soaps.

Although we’re put our thoughts about Vermont farmland on hold, we’ve continued to think about how we can move to a more rural location which enables us to plan a long term life together raising  vegetables and animals as part of self sufficiency, a lower carbon footprint, and sustainability.  This dream of the future creates a guiding vision for fighting the cancer.

Finally, an interesting experience from our role as patients.   Kathy has received her care in the middle of the X12 5010 transition which required every payer and provider to change their billing systems.   Purely as a side effect of a payer eligibility error during the conversion, she received an $18,000 bill for her care to date.   It was remedied quickly, but it illustrates the events that can occur while navigating healthcare in the US.

John D. Halamka, MD, MS, is Chief Information Officer of Beth Israel Deaconess Medical Center, Chief Information Officer at Harvard Medical School, Chairman of the New England Healthcare Exchange Network (NEHEN), Co-Chair of the HIT Standards Committee, a full Professor at Harvard Medical School, and a practicing Emergency Physician. He’s also the author of the popular Life as a Healthcare CIO blog.

2 replies »

  1. Best of luck to you in your journey. I follow it every Thursday. As e-patient Dave says, ‘Patient is not a third person word. Your time will come’. You are teaching us for our times to come.