Tag Archives: UCSF

Some Mondays Don’t Go as Planned – A Loving Fight

“It Ain’t Over til It’s Over” – Yogi Berra

Gifts from our UCSF Decision Services group
Gifts from our UCSF Decision Services group

As I start this entry we are waiting for the nurses as my wife waits on what we hope will be her final surgery, almost a year to the date of her original breast cancer surgery.

This summer has been a rough one with my father-in-law in the hospital on the opposite coast for 6 weeks fighting a staph infection that laid him up with severe back pains and a high fever which made him hallucinate.  Trying to entertain kids on their annul summer visit while juggling a couple hours in the hospital each day was not a fun chore for my wife.  On top of that her longtime neighbor and family friend died of lung cancer while we were visiting.  My wife loves going home to visit friends and family, but this time despite the pending birth of our new nephew, I think she was happy to get back home.  She hadn’t even gotten the chance to mention that she was about to undergo her 4th surgery in a year.

Four surgeries in a year is not a badge of honor and at the same time it is not even close to the amount of surgeries many people have gone through with breast cancer, but looking back on it I still wouldn’t wish it on anyone.  A total of 22 hours in surgeries so far and the 4th only expected to be 90 minutes and I can only imagine the toll all the anaesthesia takes on the brain.  Maybe its old age but I can already sense some memory issues with my wife.  She’s been through a lot and I have all the respect for her approach to this last one.

This morning our kids were cranky about having to get up early and were giving my wife a hard time.  It really didn’t make me feel good to have to pull each of them aside and remind them how lucky we are.  For two young kids who have had nothing but cancer and hospital visits all around them for the last two years, they instantly knew this was not the time to be acting up and realized how fortunate to have what they have.

(Move ahead 15 hours)

Well my wife had a bit of a temperature today and they didn’t want to operate on her for fear she might be getting sick and there could be a resulting infection.  They knew my wife and I would be disappointed when they broke the news.  We had waited 4 months for this date, but now have to wait more.  After such a hard morning  getting there it was a bit disheartening.  I could see my wife was bothered.  I was bothered too.  A little for me and a lot for her.  Tonight I just felt I had to apologize as I think she could tell I was not happy with the delay as well.  We just want to get all of this overwith.  One last surgery we hope.  Now the wait again.  A wait for another surgery date.

We can’t be angry though.  My wife and I tried to console each other and subtly reminded each other of how lucky we are to be where we are today.  It hasn’t been easy and this wasn’t going to end easy either.  We’d been patient this far and couldn’t take this personally.  It is so easy to lose your cool when you can taste that chance of moving to the next step.   What’s a few more months…heck we still have to wait a few more years to be considered cancer (and Tamoxifen) free.  The cancer clinic itself has been great.  Just a couple weeks ago during her pre-op appointment they gave her a framed article from the Wall St. Journal that she had helped with (she took photos with the physicians) as well as a huge bouquet of flowers.  They really care for her well-being and would rather err on the side of conservatism.  Getting to know people on a first name basis makes things so much easier on the patient.  I remember seeing them having to look at the charts to remember my wife’s diagnosis and name.  Unfortunately they know it real well now, but that sterile feeling of being “just another breast cancer statistic” is gone.  Being able to ask your sugreon about their kids and how they are liking their new school just helps to ease the tension.

On a side note, our son’s classmate’s father who was given only a few weeks at the beginning of the summer is still holding on.  He is weaker now, but he really wants to see his kids start the school year.  It will help them and I think he will make it to that goal.  It is really sad, but in a small way having their sons back in school with such a supporting community will make the eventual loss not as lonely.  Just last year this happened with another schoolmate when they lost their mother after her six year battle and the school rallied to make meals all year long.  I had a chance to see the father at the pool this summer and he said it had been a long year but it taught him about patience and forgiveness with his two young boys. They had lived with this cancer with their mother for 6 years and he said the highs and lows were rough.  This year was very numbing without her. Knowing that my wife was in a similar situation, he just put his hand on my back and let me know I could talk whenever I needed.

Yep.  Patience.  Practice before and after.  Take one step at a time. There is no rush when it comes to cancer because it is a long road.

Shared Decision Making for Breast Cancer Patients

Patient Doctor Consultation with Decision Services Representative on hand
Patient Doctor Consultation with Decision Services Representative on hand

In today’s Wall St. Journal there is an article on the Decision Services offered at my wife’s breast cancer clinic, the Carol Franc Buck Breast Cancer Center at UCSF: http://online.wsj.com/article/SB10001424052970203674704574328570637446770.html#articleTabs%3Darticle

Decision Services is a great resource when you are overwhelmed with all the information and emotions when first diagnosed. At the time I thought nothing of the services. Now that I look back on it, the resources and advice for helping to manage our experience were invaluable:

– My wife and I watched many DVDs, pamphlets and other articles together,
– Prepared countless questions for our visits
– Reviewed stats together
– Went over online research made available to us
– Reviewed our notes of our meetings and prepared follow up questions

In this information age, services like this are so important to have. Patients have so many questions and thoughts running through their head that they sometimes miss what is being said to them, forget to ask the questions that they wanted to ask and feel frustrated and left out. Many times my wife would hear one thing and I would hear another. We’d just review the notes taken by the notetaker and we’d have our discussion resolved. I could even use this in my everyday life.

The service provided interns who took great notes during our visits before, during and after our visits to make sure we understood everything that was said in our visits and to help us get more informed answers from my wife’s doctors. We often submitted laundry lists of questions before each visit and they were prepared with their answers before we came in for each appointment. We all know how we forget what they tell us during those visits because we are so worried, but they provided great notes from our appointments.

Yes, that is my wife featured in the article’s photos.

As we reach the aage of health reform in the US, services like these will become more invaluable as we help put some control back in the care of the patients. There are many early adopters of such services such as the Palo Alto Medical Foundation, The Wellness Community, the Mendocino Cancer Resource Center, Breast Cancer Connections, the Humboldt Community Breast Health Project, and (abroad) the Edinburgh Cancer Centre.

The entire team at the Breast Care Center, led by Laura Esserman, is blazing new trails in health care. Check out https://www.breastcancertrials.org/bct_nation/home.seam and http://www.athenacarenetwork.org/ for other innovations from this group!

UCSF’s Breast Care Center

Dr. Esserman of the Carol Franc Buck Breast Care Center
Dr. Esserman of the Carol Franc Buck Breast Care Center

I thought I’d share this great article that appeared today about Dr. Laura Esserman who is the lead surgeon at the UCSF clinic where my wife goes for her procedures.  My wife’s surgeon (S. Hwang) is part of this great group of surgeons who provide a great personal service.

The article also speaks to Jessica Galloway, who we had met through our children’s nursery school when my mother and she were going through chemo together.  5 years later, Jessica would be a great asset for my own wife as she navigated the information and questions associated with breast cancer. 

I thought this article just captures the great community and personal excellence needed to get through a very trying time in the lives of breast cancer patients and survivors.

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2009/07/20/DDSF18KFH2.DTL