By Darci Graves, MPP, MA, Health Power Editor, www.healthpowerforminorities.com
Opening by Health Power: Darci Graves, a Health Power Editor and close friend, has done herself, many women everywhere, and Health Power, a great favor by keeping and sharing a diary on her life experience since the day she learned she had breast cancer in 2013. Beginning with this segment on her Day 365, which we will call Segment 1, we will be sharing interesting and useful segments from her diary. Her detailed diary can be found at www.educatoraspatient.
Darci’s Diary – Segment 1: 365 days ago I was waking up from surgery having undergone a bilateral mastectomy and reconstruction as a result of a diagnosis of invasive ductal carcinoma in the right breast. I was Stage 1 (although originally thought to be Stage 2), triple-negative, my tumor grade was 3, and my Ki-67 (proliferation score) was in the 90th percentile.
Today I took my car to get 4 new tires. I walked to UPS to ship a package. I worked on this blog post and oh and I am cancer free… this is my new normal.
To mark this “anniversary” I wanted to sum up my journey… call it cliff notes or an executive summary… but I’m hoping my story can help those going through it… or those helping folks to go through it. All of the information below is explored in greater detail throughout my blog. On the left navigation pane, you will see an *archive* button. Click on that to reference the days/months you would like to explore further.
So here goes:
I found the tumor last June or July… it took me a while to get the momentum to go see a doctor. It took me a while for a host of reasons, but probably the main place of reticence lay in the fact that I was not a fan of my current gynecologist. Even knowing my family history, I was putting off my basic well woman exams. Finally in late July, my rational-self won over the rest and I picked a new doctor. Luckily, I adore Dr. K and immediately felt like I could begin this journey with her.
In August, I met with her, and then subsequently got the diagnostic mammogram, ultrasound, and biopsy – August 22nd – cancer.
I asked Dr. K to recommend a surgeon… who would she go to?… Dr. J.
In late August or early September (I can’t quite recall which), I met with Dr. J and agreed she was the right surgeon for me. Her ability to relate the message was great. I am not (was not) the typical patient (I assume). I had intellectually prepared myself for this moment for a long time. My mom was diagnosed when I was 16 and I have known since that day that this was a possibility. I had done homework and made decisions. I believe in being prepared. I didn’t **want** it to happen, but if it did. I wanted to be ready.
I told Dr. J. that she could skip ahead in the “script” that I was ready and I knew what I wanted. Double mastectomy. Everyone in my family had it move from one breast to the other in a matter of 12-18 months following the initial diagnosis. I told all my doctors from day one – I want to do cancer ONCE.
We talked about plastic surgery and reconstruction. She said (and I love this about her), tell me what you want and I will find the right surgeon for that procedure. I said if all possible I would love to keep my nipples. She said, I will call Dr. C and let him know you will be reaching out to make an appointment.
I met with Dr. C and was able to squeeze 2-3 appointments into 1… in large part because I knew what I wanted. My basic request of him was, since you are in there if we can go bigger without stressing out the body, great… if I come out the same size, fine. Without blinking, he said great. I’ll have a few sizes available the day of and we will figure out what will work.
Best of all because I worked with my doctors to assemble my team of doctors, I was able to get surgeons who worked well together. And they were able to do my mastectomy and reconstruction simultaneously. (YAY, less stress on my body – I knew that this journey was a marathon and I wanted my body to be as rested as possible).
The surgery went well. Everyone was pleased, including me.
It was painful. It was awkward. But it was over.
Two nights in the hospital, then home.
I worked with Dr. J to identify a medical oncologist. Given the aggressiveness of my cancer, I knew I needed someone who was going to be willing to work with me long term. Enter Dr. L and PA. A.
Port or not to port? I knew from the beginning that a port was not going to be my first choice. I may have had shitty genes, but I knew I had good veins. So I said, if and when the veins give out I will consider a getting a port. I was already tired and I didn’t want another procedure. Nor did I want something foreign (other than the breast implants) in my body.
Three weeks (and one presidential motorcade) later the drains came out.
5 months of chemotherapy began.
Some nausea, but mostly lower GI issues… A *rare* side-effect… I was not surprised, but it is addressed through supplemental medication.
Lots of blood tests.
My body handled just about everything as well as it could. Luckily I had been able to take short-term disability and really focus on self-care and recovery.
Chemo continues and on November 25th, I lost my furry friend (Tessa) of 11+ years.
I know in my heart she stayed as long as she could, but it will never be ok that she had to go.
It wasn’t until I lost Tessa that I really had any *strong* emotions, up until then I had simply focused on moving forward. But now bald and Tessa-less, I found my road-rage rants evolve to “I have cancer and my dog just died, get the EFF out of my way”…
December 2013 and January 2014
Holidays. Family. Healing. More chemo. Started going back INTO the office part-time (I had begun working from home back in October). Lots and lots of quiet and pondering. I wrote a manifesto for my cancer-free-turning-forty-life.
Despite still mourning Tessa, I knew that it was time to laugh again. To have a routine that required me to move (regularly) again. And on February 1st, I adopted 8 pounds of ridiculous in the form of Ella Jane.
Suddenly I was a girl with fake boobs and a small dog. Friends started teasing me that my hair was going to come in blonde just to spite me.
February 20 2014 – I received my last chemo treatment.
An older man approached me in the lobby of the oncology office as I was leaving. He asked me how I had stayed so positive throughout my journey. He said that he and the others [in the chemo room] admired the way I had handled the journey and had looked forward to seeing me every week.
All I could was blink and say thank you.
Back in the office full time…Still tired a lot…still sleeping a lot, but trying to find that new normal.
I turned 40.
And I made the decision to do genetic testing. The results weren’t going to change my mind about anything, but I ultimately decided that more information was better than less.
My mom is one of five sisters. Three of the five are breast cancer survivors. One of the unaffected sisters has been tested and she does not carry any of the BRCA mutations.
On July 15th, I found out that I do have the BRCA1 mutation. Now the rest of my family can use this information to determine what is the best route for them.
On July 25th, I acted on my manifesto and moved closer to my family and friends.
In an effort again, to do cancer only ONCE, on August 16th I had a bilateral salpingo-oophorectomy, which removed my ovaries and fallopian tubes. This minimizes the chances of me developing ovarian cancer.
On September 6th, I present at Stanford MedicineX, regarding how my privilege helped me to arrive where I am today.
On September 9th, I find out that the path results from my ovaries/fallopian tubes are completely clear – nothing cancerous, nor pre-cancerous.
On September 10th, I exhale deeply. I have now checked every box that I **can** to ensure I only do cancer once. There are no guarantees, but I know there isn’t anything else that I could have done.
On September 13th, I write this summary… I am a changed person.
My brain does not quite work the way it once did.
I have peripheral-neuropathy in my feet.
I am going through menopause.
I am so grateful for the enormous amount I received from my friends. From care packages, to hugs, to cards, and more. I have never felt more loved.
I now celebrate everything.
There are more blog posts to come… reflections on my Stanford MedicineX trip, my three big lessons from my breast cancer journey, why I think we need to rethink the shape of implants, and how being the daughter of a survivor helped me to be a survivor as well. If there are questions that I can answer or insights I can share, please do not hesitate to ask. This is the part where I can really start to use my story for good.