Thursday, December 29, 2011

Our Cancer Journey - Week 2

It's been two weeks since my wife said "I have cancer" to my daughter.

It's been a week since we described our workup thus far on my blog.

Reaction to our blog post was diverse, ranging from the HISTalk blog to the Boston Globe.

It's a time of anxiety and unanswered questions.   The diagnosis and staging phase has been described as one of the two major tension points in  cancer.   The other is the time after remission, when the worry about recurrence is a constant burden.  One of our doctors recommended we keep a "family bottle" of anti-anxiety medication ready for those times when the stress exceeds our capacity to cope.   Cancer is truly a family disease and the emotional impact extends from the patient to family caregivers.

Many friends and colleagues have offered prayers and support.   A few have lamented that care coordinated by a physician-husband at a Harvard-associated hospital in Boston lacks equity since every wife/mother/daughter may not receive the same care throughout the US.  Kathy and I agree.   We posted these comments in response to those who speculated that Kathy's care consumes an asymmetric amount of healthcare resources.

John writes:
"At the same time I'm focused on Kathy's care, I'm also deeply committed to quality, safety, efficiency, and equity in healthcare across the country.   In the upcoming weeks, I'll describe how the electronic records that coordinate Kathy's treatment provide the same protocols to every BIDMC patient, regardless of insurance status, profession, or income.    My goal is the 'right care' - not too much nor too little - that follows best practices based on evidence.   Decision support driven 'right care' is the only way we can hope to improve outcomes while bending the cost curve of healthcare spending that threatens the US economy.   Universal healthcare supported by universal adoption of electronic and personal health records must be our guiding vision."

Kathy writes:
"My life with John has been entwined for 32 years, so to say "we have cancer" cannot be more completely and utterly correct. True that physically, only one of use has the obvious organic symptoms, but our close partnership has been irrevocably changed by the diagnosis. Whatever lies ahead, it is impossible to go back to that innocent moment before hearing the word "cancer".

I am luckier than most - I have health insurance, and access to a major urban medical center that is also a teaching and research hospital. But, as I encourage John to document our progress publicly in his blog, I am also keeping the memory of a friend close to my heart. She did not have health insurance (as a part time adjunct instructor of art). With this financial barrier, she unwittingly waited until the cancer had spread before seeking medical care, and although she fought bravely, she lost her battle with breast cancer.

Throughout my life, I have not needed medical resources beyond occasional primary care visits and the birth of one child.  My first weeks negotiating the barrage of new terminology, new tests, and new doctors was significantly eased by my access to a personal health record. The hospital's electronic health record is important to me, since it empowers my doctors to work as a team with open access to all my clinical data, enabling the team to make the best decisions for my health. As I recall my lost friend, I also think about all patients with a breast cancer diagnosis, or other serious illnesses, and  how they manage their care journey if they worry about health insurance, or have no access to a personal health record."

This week we continued the staging process in anticipation of finalizing our care plan (chemotherapy, surgery, radiation oncology) in early January.

On Friday, Kathy went to the operating room for a sentinel node biopsy.  This is now the recommended standard of care for cancer staging as it uses radio-isotopes to identify those lymph nodes that directly drain the tumor.  The surgeons harvested lymph nodes that were positive for radioactivity and one nearby node that was non-radioactive.

After the surgery I took Kathy home and the first thing she wanted to do was re-expand her lungs, avoiding post operative atelectasis.   We walked a few miles around Lake Waban, watched the sunset, and discovered a family of Muskrats seeking their evening meal.

Her post operative pain was helped by gentle exercise and stretching.   She took 2 Tylenol before bed.  Although the anxiety of the workup has interrupted her sleep - she wakes at 3am and has a hard time failing back to sleep - her post operative course has been uneventful.

On Tuesday night, we received the pathology report from the sentinel node biopsy.   It showed one lymph node (directly draining the tumor) with micrometastasis (0.1 cm) and one lymph node (not directly draining the tumor) without malignancy.

We're guessing that the staging will indicate T3, N1, M0 - a HER2 negative ER/PR positive 5cm tumor, with positive but minimal lymph node involvement, and no distant spread.   This may imply Stage IIIA, but we will await a definitive statement from the care team, since staging is complex and multi-factorial.

The tumor is very aggressive.   Less than a month ago, there was no lump.   Today, her left breast shows skin and shape changes.   We're meeting with the oncologist this afternoon to document the physical changes.       In general, research indicates that outcomes are the same regardless of the order of treatment - chemotherapy followed by surgery verses surgery followed by chemotherapy.   However, rapid growth and skin involvement may warrant chemotherapy as the first step.    Since Kathy is continuing to heal from the sentinel node biopsy, we have to time next steps carefully.   It's likely that chemotherapy will reduce her ability to heal, so we do not want to start it too soon.  However, the tumor is growing rapidly, so we want to start it as soon as possible.

Mentally, cancer can be overwhelming.   It is important to think about cancer treatment as "fitting into your life and schedule" verses letting the cancer control you.    The care journey will take time and there are many steps ahead.  

Thanks so much to all who have offered their encouragement.   Kathy and I are emotional and analytic people.  Our endless optimistic is only occasionally punctuated with sadness.   To paraphrase Robert Frost, the forest ahead is dark and deep, but there are promises to keep and there are miles to go before we sleep.   We're ready.


Rich said...

Wishing you the best possible outcome for your family. There's no other blog I read more regularly. I enjoy every single post and really admire your ethos.

Will Snow said...

our prayers are with you my friend

Eve Harris said...

Dear CIO / physician / husband John (and of course, Dear Kathy)

I am sorry to hear you have cancer. It was humbling to read your articulate acknowledgement of the privileges that will help you navigate the healthcare system.

Wellness must be your top concern right now and I don't want to waste any more of your precious time! I have already written a letter-via-blog-post to a recently diagnosed friend. In that post you can find a variety of resources and a few gentle reminders to prioritize yourself. Sounds like you're well on your way.

Best wishes,

Mattpenning said...

Continued prayers for you two. Thank you for sharing the journey. I am sharing this with my wife, to encourage continued and constant self exams.

Gary M. Levin said...

My thoughts and prayers are with you and your family. As you said cancer (and) a chronic illness are a family disease. Besides a bottle of anxiolytics, try alternative treatments such as meditation, massage therapy, and perhaps a non involved counselor to share your personal angst. My non expert medical opinion would be a mastectomy as soon as possible prior to any toxic chemo or radiation. Minimal manipulation seems to make sense and prior radiation will alter all tissue reactivity, immune or otherwise. You are at a great place for care, but sometimes places like yours miss the forest..looking at each tree. Medicine as you know is all about judgment. Let's hope your quality of life remains high. My experience is that prayer puts one in a surrounding of supportive friends for no matter what evolves. Studies have shown it does not increase survival rates, but that is only a small part of the human equation. Let the medical care be run by experts, and the spiritual support come from what you chose, just don't neglect it. This is personal so you don't have to post it.

Anonymous said...

I am hoping for a positive, peaceful journey for Kathy and strength to you.

Aaron Seidman said...

Kathy, Ruth and I want you to know that you are in our thoughts; we wish you a good outcome and a rapid recovery.

jim Gorin said...

Hi John,

I want to respond to your blog/Geek Doc. I am married the 2nd time for 28 years. IDO NOT agree
that Kathy & You are getting that much BETTER Care as a "Medical Couple".

My wife has had 2 medical problems over 30+ years of our relationship. As a caring loving "boy-friend" and husband
I went to "extreme" lengths to (1) Get a Mammogram & (2) have an Aurora Imaging MRI at Faulkner Hosp.
In Kathy & Your situation, if you were not in the medical field,KNOWING you "3" as FAMILY, you would be doing 95+% you are able to do…yes, you have a medical "education". But with "Chutzpah" MUCH CAN BE DONE, as "I" have. Thank God! God Bless YOU 3!

John, I wanted to respond last week when someone "criticized" you and what you were able to do considering your "connections" and to that I was BS because of what I have been able to do as a "caring husband"!

God Bless You 3 & I, my Wife and others we know will pray for we believe in Prayer & MIRACLES!!!!

kul bhushan said...

John and Kathy,
I was reading comments with moist eyes and sometimes sobbing.You by sharing your thoughts have made me part of your life.i was feeling part of me was suffering.Your sharing treatment of your wife with us is in light of sharing your work experiences in the same vein.You have touched many of us by your writings.I would wishaway your troubles ,if i could.I wish that they be gone any way.

Strength and blessings in the New year.
kul bhushan

Peg said...

John, Kathy & daughter:
Thank you for sharing your journey and including the importance of the EHR for decision support as well as research - the national database that should be created (with appropriate privacy controls)you as well as others cope with the lifelong impact of this disease. As a breast cancer survivor, diagnosed April 2000, I can appreciate what you are going through. FYI, I "met" you when you spoke at NLM in May 2010, after MLA annual meeting - I was one who asked about extending the EHR to long term care facilities. I applaud you for going public, and can attest to importance of online as well as interpersonal support. Kathy may want to join the breast cancer list, or perhaps the CHESS program that is more private - these were invaluable during the first year of treatment. Also, consider getting involved with the National Breast Cancer Coalition and their lobbying effort for more research funding - I attended their annual conference in 2001 and might have stayed involved if not turning to advocacy for refugees, especially the Hmong in 2001 ( As a medical librarian, it was difficult enough to make treatment decisions - what if I didn't speak English and couldn't communicate with my providers? And what if my cultural traditions were opposed to surgery?
Without the EHR and a commitment to EBP (evidence based practice), it can be difficult to make timely decisions. After surgeon in clinic (with EHR) refused to do a sentinal node biopsy, which was becoming the standard of care, I went for a second opinion on the chemo, at a competing clinic without EHR. Later, when oncologist I chose left, I ended up back in the system with an oncologist whose communication skills not quite as good. Records, including echocardiogram & MRI(had some heart damage due to chemo & history of viral cardiomyopathy) were not transmitted in a timely manner. In short, lots of stress that didn't need to be. What if getting the results had been important? And, it would have been nice to avoid the poorly done lympth node surgery, still causing lymphedema problems.
While I could write a bit more, I'm pleased to say that the clinic we use is very involved in EBP and quality assurance efforts, as well as genetic research. The bad surgeon is retired, and I'm a vocal advocate for EBP and EHR, including nursing interventions that can improve the quality of life. My best to all of you - you sound really on top of what needs to be done.
Also, thank you for including medical libraries as part of the vision - I know some of yours and taught a CE on finding the best resources for evidenced based nursing at your hospital a few years ago. Keep up the good work for health care equity!
Margaret (Peg) Allen, FMLA

Unknown said...

John: My thoughts are with you and Kathy, and your daughter. I hope you can get good energy from your many, many friends.

Marcie said...

As an Emergency Physician, EMR Vendor Physician Consultant and breast cancer survivor, I applaud your very public struggle. You put your head down and "do it," working beyond the "what ifs",the post surgical changes, the fatigue from chemo and most of all, the loss of control. You will be in my thoughts throughout your journey. Keep the faith!

Ken Huling said...

Dr. and Mrs. Halamka, i'm sorry to hear of your diagnosis. Please stay positive. As you know, there are many great outcomes and success stories to bring you strength in your fight. Wishing you much strength, success and joy in the coming years.

- Ken

Anonymous said...

I just wanted to extend my best wishes to you and your family. You will certainly be in my thoughts and prayers.

The.CdC said...

John: I Have worked at Dana-Farber since I left BI,and I've heard this same scenario over and over with very positive outcomes. I wish you, your wife and family an easy journey and I pray for her good health in 2012.
Caren Cummings

Unknown said...

Thank you both for the update on your families path though cancer and your willingness to be so open about something so tender.

One of the reasons that I became a patient centered design advocate in the wonky world of health IT was because of my own mom/family's successful journey with metastatic breast cancer.

Health and illness often have as much impact on our families, our emotions and even our spirit as they do on our bodies - so know that you and your family are in my families prayers and thoughts.

Sherry Reynolds aka @cascadia

alison said...

Hi, have been following you guys sine day one as i found out the same time. I start my chemo on friday 13th jan (also my middle daughters 16th birthday) for 5 or 6 months,surgery,rads then drugs to keep at bay.I'm going to try the "cold cap" and see if it works. Everyone tells me with the chemo drink lots of water. Good luck with your chemo i know we will sale through it.


Joe Rubinsztain said...

I hope your joint journey ends with Kathy's full recovery and more deep insights from new perspectives.

Best wishes,