Thursday, January 12, 2012

Our Cancer Journey - Week 4

This week, we learned about the reality of chemotherapy.

On Friday, Kathy received her first cycle of Cytoxan and Adriamycin, a few days ahead of the schedule I posted on my blog last week.

 I drove her to BIDMC.  We checked into the ambulatory Heme/Onc clinic and she was given a warm pack to increase circulation to her hands.  The lab staff drew a Complete Blood Count (CBC) via a finger stick to avoid creating punctures in her veins, given that her chemotherapy medications are vesicants that cause a chemical cellulitis if they leak into tissue.

The CBC was excellent - a white count of 10 and an hematocrit of 41.   We'll follow this closely as the chemotherapeutic agents affect her white blood cells.

Her remarkable nurse, Dianne Holland-Sullivan, spent time getting to know us, then expertly inserted an IV without any issues.

I promised to reflect on the BIDMC electronic health record in describing Kathy's care.

All of her providers share data among themselves and with Kathy.    Here's a view of Kathy's electronic profile, showing her problem list, medication list, allergies, appointments, labs, and social history (yes, we've been together 33 years from age 17 to age 50).   She's given full consent to share this data publicly as it illustrates the importance of an electronic health record for care coordination.

She can view the same data via her personal health record.   The only difference is a few delayed staging results to ensure patients and doctors speak about cancer diagnoses before the data appears on the web.

All of Kathy's chemotherapy orders were written electronically via the BIDMC Oncology Management System.     Humans do not dose chemotherapy, computers calculate everything based on protocols that humans maintain based on clinical trial evidence.    In Kathy's case, the oncologists designed and made the clinical decision to place her on the "Breast Oncology - CA - Dose Dense" care path.

The computer wrote these orders for her based on her height, weight, age, kidney function, and allergies.

The dedicated chemotherapy pharmacy in the heme/onc clinic prepared the medications, bar codes them, and delivers them to the chemotherapy nurse.    Two chemotherapy nurses validated the medications, the dose, and the patient using bar coded patient wrist bands and verbal confirmation from Kathy.   An automated medication admission record recorded when the chemotherapy agents were administered.

Kathy first received three pre-medications:

Fosaprepitant - an anti-nausea drug
Ondansetron - an anti-nausea drug
Dexamethasone - a steroid to reduce inflammation and synergistically work with Odansetron to prevent nausea

She also received 500cc's of normal saline as supportive hydration during chemotherapy.

After pre-medication, Dianne pushed 118mg of Adriamycin (doxorubicin) via two syringes over a few minutes.

She then administered 1180mg of Cytoxan (cyclophosphamide) over 45 minutes.

During the medication delivery, Dianne stayed at Kathy's side to discuss side effects, the rationale for the treatment, the likely events to follow medication administration, and the planning for the additional cycles to come over the next 8 weeks.    I provided Kathy with a banana, almonds, water, and companionship.

After chemotherapy, we headed home.  Kathy took .5mg of Ativan in the evening as directed to help her sleep.

On Saturday, Kathy felt fine - we walked a few miles around Lake Waban, prepared meals, and shopped together.   We drove into Boston for a subcutaneous dose of Neulasta (Pegfilgrastim), a white blood cell stimulant to bolster her ability to fight infection as the chemotherapy kills her white blood cells.   She took a dose of Dexamethasone in the morning and at night.

On Sunday, Kathy felt prodromal - as if she had the early symptoms of a virus.   We walked in the woods near our home and selected a few logs for me to split.  As romantic as it sounds, Kathy bought me a Swedish Forest Axe and Splitting Maul from Gransfors Bruks for Christmas.   We carried a few hundred pounds of wood to the car together.    Yes, I know that sounds odd, but we have a three decade history of doing the unusual together.

By Monday, she felt significant fatigue.

At no time did she feel any nausea.

In her words:

"Overall good reaction to the chemo materials, minimal problem with the steroids
Very light use of Ativan for first night to sleep
No use of anti-nausea meds yet.
Appetite reduced but adequate, sensation of salt tastes reduced
Digestive tract still normal, no use of any aids. Credit vegetarian diet high in fiber, legumes and leafy greens/cruciferous (eliminated all soy and added an egg to breakfast), no dairy, meat or fish consumed.
Fatigue set in hard on Sunday night from a Friday chemo session.
Early mornings and evenings are low energy, one faint period during eye exam.
Neulasta induced muscle myalgia/bone pain disturbs sleep cycle.
Evenings I feel like I am coming down with the flu (chills and aches), mornings  I feel like I am recovering from the flu.
Ordered new glasses to get away from contacts during chemotherapy, warned of changes in moisture in the eyes (given Systane eye drops by opthamologist)"

Her general pattern is moderate sleep, the need for a nap after breakfast, a great afternoon, and early evening fatigue, leading to bedtime an hour earlier than normal.

I've changed my schedule to get home by 4pm, walk with her, and support her in the early evening.

I've cancelled meetings on nights and weekends.

Every other Friday is a chemotherapy day, so I've cleared Fridays.

I've cancelled my travel for the next few months.

My colleagues have been incredibly supportive of my running late afternoon and Friday meetings by phone so I can be at home.

We're on the path of treatment and the cancer cells are dying.   Kathy's greatest fear has been the chemotherapy.   Thus far, the anticipation has been worse than the reality.  However, she started the first cycle in perfect health.   As the second cycle begins on January 20, she'll be a little more vulnerable.  

Today she's back at work in her Boston South End Gallery, NKG.  Her spirits are good and she's fighting cancer with boundless optimism.


saul_kravitz said...

First of all, my thoughts/prayers are with Kathy (and John) for the success of the treatment. Your openness about the diagnosis/treatment is invaluable. Thanks for sharing.

A specific question about Kathy's diet. ("Digestive tract still normal, no use of any aids. Credit vegetarian diet high in fiber, legumes and leafy greens/cruciferous (eliminated all soy and added an egg to breakfast), no dairy, meat or fish consumed."). Can you comment on what is known about the benefits of a vegan diet for patients undergoing chemo? Also, what was your rationale for the egg/soy substitution.

Thanks and best of luck,

skoba said...

From Japanese hematology/oncologist, everything is ideal for treatment. Sunday event might be a steroid withdrawal syndrome. Next time, steroid tapering would be better if it were available.
And I recommend to have flu prophylaxis dose oseltamivir when John caught flu.

Best regards with wishes.

John Halamka said...

From Kathy:

My tumor is Her2 negative ER/PR positive and I have switched to a modified anti-estrogenic diet that removes soy and other estrogenic foods. Soy has phytoestrogens like genistein and daidzein that remain a topic of continued studies. A high fiber balanced vegan diet has long served me well for cardio/digestive/energy on so many levels. I do not call myself truly vegan at this point because I accept honey in foods, and I simply found that personally my craving right now for protein is solved with an organic egg (I buy Vital Eggs at breakfast, and increase legumes and some raw nuts the rest of the day. Cancer patients in chemotherapy in particular need protein for healing Everyone will have different needs, but I also have a strong philosophical reason for choosing to not eat meat or dairy. Inevitably, each cancer patient should consume the most healthy foods they can tolerate during chemotherapy.

Anonymous said...

Last week you mentioned your concern about hair loss secondary to the chemo.

Did you know that many leading breast cancer treatment centers including New York Weill Breast Cancer is using "cold caps" to prevent hair loss?

It is common practice in many EU contries.

Sherry @cascadia

Anonymous said...

Sounds like Kathy has her diet and boundless optimism down. Good medicine!

It has been a long time since I listened to this, but You are not Alone Conversations with Breast Cancer Survivors and Those who Love Them, artist Edward Janus on iTunes may be worth a listen.

I am so glad to hear the first week went well. Fear of the unknown has now been replaced with some idea of what to expect.


Miguel Vilaplana said...

Our thoughts and prayers to Kathy & John(and the rest of the family too)for we partially understand what you are going through. Courage and thank you very much for the diet posts.

Stujonesmd said...

I add hopes and prayers that Kathy will swiftly and easily as possible enter the ever-growing rolls of Breast Cancer Survivors.

I am comforted and encouraged by the evident excellent care from the BID staff. I last knew the BI shortly before it was immortalized (and pilloried) as the 'House of G-d' by a friend of mine. I need say no more.

--Stu Jones, HMS '72

Virgil E Vickers said...

A background question: Is there a common or inter-accessible electronic medical record capability between the hospital and wherever her previous outpatient care has been performed? That is, does the term "providers" [who share data] include those not affiliated with the hospital? Apologies if the question is foolish, irrelevant, or previously answered.

John Halamka said...

Currently, BIDMC clinicians have access to the records of 1800 referring clinicians from the Beth Israel Deaconess Physician Organization and Atrius through a combination of exchange through the New England Healthcare Exchange Network (NEHEN) and a set of web services we designed ourselves.

Anwar said...

Hello John

I wish your wife well in the treatment process. Our thoughts and prayers are with you.

I recently became vegan and it feels great. It is encouraging to see a family like youRsr adopt such a conciencious diet.

As a doctor I would like to ask you. Why do you think people with good diets get cancer. In particular do you think the pervasiveness of cell phones have something to do with it. I'm just curious what your opinion is as it seems you would have a special perspective