Thursday, January 26, 2012

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.

7 comments:

Kevin Groff said...

Keep on keeping on. You have a legion of well wishers behind you. This is very educational for those of us who have not directly faced this situation [knock on wood], and I know that was one of your motives for chronicling. Thank you.

P.S. I enjoyed the SOAP/REST segue. Nice.

Vivek Kolpe said...

John, thank you for sharing the challenge in your family. What an inspiration you both are to so many of us - dealing with this challenge with such bravery and class and yet contributing to our learning. Thank you and godspeed with the recovery and continue your terrific blogposts!

Unknown said...

Thank you for your transparency. I have to say that your posts on this topic have sometimes caught me breathless. You and your wife are courageous people, and we benefit for that. You are in my thoughts and prayers.

Tariq said...

I agree with Kevin, there are legion of well wishers behind you. Everybody may not be able to write but will be praying for you, your wife and family

Anonymous said...

Have been enjoying your blog since my 2010. Wishing you and your family the best during this endeavor.

Anonymous said...

I believe in the power of prayers and will keep your family in mine. Stay strong & let your readers know how we can be supportive.
-Dave

Rita Sutter said...

Keep your chin up, Kathy. The chemo you are on is the strongest the docs can give for breast cancer, according to my oncologist at Johns Hopkins. Imagine your docs are measuring tumor markers in your blood. Well, my number last April, before treatment, was 436, which I believe is fairly awful. After eight treatments of Adrea/Cytoxin over the spring and summer, with the last being September 28. The 436 figure declined over the months and as of an October 20th, blood test the tumor markers measured 42. According to my medical oncologist I am a poster child for chemo, having gone from what I now see was circling the drain to doing "phenomenally well." So, take heart, the stuff can work. :)