Thursday, March 22, 2012

Our Cancer Journey Week 14

Taxol's major side effect is peripheral neuropathy.    Kathy will receive the 4th cycle of Taxol this week.  At this point, she can no longer feel her fingers and toes.

As an artist, she depends on a fine sense of touch.   The peripheral neuropathy was the side effect we dreaded most.   She'll meet with her doctors on Friday to discuss next steps - possible change in medications and addition of other medications to reduce the intensity of numbness/pain.

She's tolerated the Taxol well, keeping up with her daily activities with the usual verve.  One other complication is that her nails are black and brittle.  The slightest impact causes extreme pain - imagine that brushing your nails against a counter feels like slamming your hand in car door.

As we continue with treatment, we're planning ahead for the end of chemotherapy in May, the imaging studies to evaluate the results of chemotherapy and the surgery to come.     I've cancelled all my international travel for the rest of the year and have minimized domestic travel to a single day trip to Washington or Chicago each month.    Whatever the future brings, we'll be ready for it.

My colleagues at BIDMC have been incredibly supportive, giving me the flexibility to join Kathy at chemotherapy appointments, to be available for heavy lifting when she needs help at home with activities that are too painful or awkward for her to complete on her own, and to relax my meeting schedule enough to bring better balance between my work and personal lives at a time when my family needs extra attention.

I know that it may seem ill advised to plan changes in our lives like purchasing a farm (closes April 27), selling our old home (closes May 2), and moving during cancer treatment.  In general, the consents for chemotherapy emphasize that major life decisions should be avoided.   However, as I've written about in other blog postings, part of winning the battle against cancer is taking control.    We've long wanted to live more rurally, and now that we're empty nesters and I've focused my job responsibilities on BIDMC and the State HIE, we're ready for a new beginning.    Sometimes a change in home with corresponding reduction of the stuff you own and refinement of the lifestyle you lead can be transformative.   What better way to plan for the completion of chemotherapy and surgery, than emerging from the cocoon of your old life as the butterfly in a new life.


Jeff Carter said...

Your blog is inspiring. I am also fighting the battle along side my wife. Thank you.

Kate Gamble said...

I love the positive attitude that you and your wife share, and I commend the decision to make a move that will better suite your plans and lifestyle.
Best of luck to you both going forward!

Phil Kahn said...

John - I've followed your blog as a former CIO and present day consultant. Your family's personal medical journal is inspiring. Thank you for sharing it.

Anonymous said...

I began reading your blog because of the health IT content, but now find your personal cancer journey content even more compelling. I just spent the weekend with two friends who I met in college, 40 years ago. They have battled breast cancer in the past 2 years...and are doing well. As a woman whose mother battled breast cancer over 35 years ago, I too am inspired by your refreshingly honest and candid journal. Breast cancer affects so many families and the reflections of you and your wife will help others with this common struggle. Thank you both for your courage...and good luck in your new home. It sounds lovely.
Sharon Hill Price

Anonymous said...

I hope you find the farm an adventure full of healing, laughter, vegetables and an abundance of flowers. You and your wife are inspiring.
Thank you for sharing and be well.

jamzo said...

possible change in medications and addition of other medications to reduce the intensity of numbness/pain."

regular acupuncture treatment has been of enormous benefit to me in reducing the intensity of numbness/pain

community acupuncture is convenient and economical

Aviva said...

Your positive attitude and wise perspectives are very inspiring. I hope that you will find the time and motivation to write a book someday which can reach an even wider audience.

Sounds like you are doing everything imaginable for a healthy and fulfilling future. But...just in case you haven't looked into Naturopathic Oncology, is worth considering as adjunct therapy to support Kathy's rebuilding post-chemo. I've watched a friend go through the process and year's recovery with much greater ease with the help of naturopathy. (The site has state listings. Sadly, only 1 in MA, while over 25 each in OR and WA)

Thank you for sharing your journey and providing the inspiration.

Anonymous said...

I feel for your wife as i'm having bad side effects with Taxotere. Have had very bad problems with my hands, face, jaw, pain in body.
I've been taken off Taxotere and having a break. I will go back to FEC if i can have more chemo. Next is surgery then rads. Not sure if i can have rads as i have solar urticaria, need to do some research.
Sending you both lots of luck.