On December 9th I blogged about the extraordinary mammography experience I had. The irony is that one month later I am moving headlong into a fight against breast cancer. It has been both a blessing (detecting the cancer) and a curse (having it alter my life). It would be easy and perhaps even understandable for me to curl up in a ball and hide for the next six months while I go through chemo, surgery and radiation, but that’s not me. At least at this point I don’t think it is. God has fortunately given me the ability to communicate, care passionately about how others are being treated, and help our clients see themselves through the patient’s eyes. So this time I’m the patient. I hope the experiences and observations I share in this blog will provide healthcare professionals with my unique inside perspective. Brooke Billingsley
There have been a lot of blogs and journals written by patients describing their bouts with cancer. This one is a little unique in that I hope to share my experience in a way that helps my healthcare colleagues think about what they do in the name of the patient experience. Even though we have for years observed healthcare through healthcare mystery shopping and employee perception deep dives, this is first hand, replete with the anxiety, fear, and confusion associated with being a cancer patient.
One of the immediate observations I have had is that no matter how many people you run into who have had cancer or been affected by cancer, it is a personal journey with an uncertain end. Don’t get me wrong, I want prayers, love and understanding, but my cancer isn’t your cancer. It can’t be. I guess that is my message to healthcare people as well. I may not be quite as unique as I think I am, but my healing has to be individualized. If the healthcare system cannot make that happen, I have to do it myself, which means lots of research, meditation, and talks with God. Oh, and I see a real good wig in my future.
Nothing seems to make sense about my cancer. For example, I have none of the risk factors so popular in medical literature. I am conscientious about what I eat, go to the gym three times a week, and am very aware of my own body. I delayed my annual mammogram by a mere two weeks. More irony – my mammogram was delayed because I was in Brazil speaking to a women conference about hope. I even had the occasion to pray for a woman who was near hysteria over her pending breast cancer surgery. When they heard of my diagnosis three weeks later, many of the attendees at the conference asked if I knew I had cancer when I was there. Am I that strong? Time will tell.
When this all started, I wanted to hear that because of all the right things I had done, I was at least going to get some credits. Or how about points toward future procedures? Because I eat right, two less chemo sessions. Or because I work out, no radiation.
My oncologist is from India so he seems to get the ‘you are what you eat’ thing. One of his favorite phrases is “You’re a smart person, you understand.” I admit I kind of like hearing that approach. Playing to my ego. He even called me a “Super woman” when I described what my life was like. Again, a good play.
However, almost a month into this and I hadn’t heard one expression of what I would call ‘good news’ such as it’s a calcium deposit and not something concerning. The biopsy shows no cancer cells. It’s only Stage 1. There’s no need for chemo. Finally the oncologist explained that the presence of positive estrogen and progesterone means that cancer cell growth was likely slower. You’d have thought we just scratched off a $20,000 lottery ticket. Kevin and I were so thrilled with this kernel of good news we were high-fiving.
And yet, when the oncologist laid out his game plan, it didn’t feel personalized. It felt regimented. What did I expect? I want recognition that I am unique. I am angry that this is happening to me, not to mention millions of women. Okay, to be brutally honest, I am having such a hard time with the idea that I am going to have toxic chemicals put into this body. I want someone to say they understand that and not just assume it is a given that that ‘is what we do.’
Let me talk briefly about communication. I have found the healthcare team so far to be very loving and empathetic. My oncologist requested my cell phone number so that he can check in on me at his convenience. His assistant told me not to be alarmed if he calls me on the weekend because it means he is thinking about me. I find that comforting.
I am also very impressed by my surgeon who spent an amazing amount of time with me and I could tell she was making every effort to connect with me. She didn’t even flinch when I talked about my new vegan diet. She even called me at 7 p.m. the day of my breast MRI to tell me that the diagnosis was confirmed as Stage 2 and contained.
So I found it interesting when this extraordinary communicator warned me that I might find her assistant a little unrefined (my word, not hers), but that she was really very good at what she did. Afterwards, Kevin and I discussed her preemptive remark. Kevin thought it was a good move on the surgeon’s part to mitigate future perceptions of the assistant. I countered with the argument that she was attempting to lower my expectations and convey the message that the employee’s efficiency trumps patient satisfaction, a theme explored masterfully by Fred Lee in If Disney Ran Your Hospital.
I previously mentioned the breast MRI I had to endure. I say this with all sincerity and in the name of patient satisfaction; all manufacturers and MRI technologists must be required to spend time in the machine for the same amount of time prescribed to patients. Face down for 45 minutes straight with their arms above their heads. Are you kidding me? I won’t do it again.
First chemo tomorrow. Yahoo!
Brooke
I read your blog this morning coincidentally while waiting for mass to begin. Needless to say you were in my prayers today! And you will continue to be throughout your progress.
Another friend of mine who is also a client just declared herself one year “cancer free” after having been diagnosed with Stage 4 breast cancer in early 2010, going through the treatments, etc. I hope yours goes away just as quickly.
Mary Pat
Sometimes things can happen that will go beyond mere rationalization; eat right, exercise, say your prayers, help an old lady cross the street…and yet you still experience something that you never thought would, or should, ever happen to you. And let’s not leave out TIMING and don’t forget IRONY. It’s no coincidence that this happened to you and at the time it did. The Bible tells us that God works in mysterious ways…it’s only mysterious to US, HE knows exactly what HE’s doing! Trust and believe, HE will see you through this and know that you have already served Him with this testimony. This too shall pass…and when you come out on the other side, you will be able to do even more to serve with Part 2. So many people, not just women, will benefit from your example of strength and endurance, not to mention your feedback and suggestions for the medical community. Let’s pray that along the way HEALTHCARE will be chemoed to the extent that it will begin to radiate a new level of committment to enhancing and improving patient services!
May God Bless you and keep you through this journey!
Hi Brooke,
Today I received Grace on Wings announcement of their annual banquet and learned you are the featured speaker.
Since I did several mystery shops for you (St. V’s), I wanted to catch up and went to the website. Well, I was surprised and concerned to see the subject of your blog. I will be at the banquet and look forward to hearing you speak. In the meantime, know I will be praying for your complete healing and that your treatments will go smoothly and without complications or side effects.
Sharon