We were together for over 12 years, and even after all that I never quite lost that sense of incredulity throughout it all, that she willingly chose me, and KEPT DOING SO day in and day out. If you know me, you know that marks her as something special right there.
What kind of woman was Diana? She was a beautiful soul, a warm and empathetic person with great dynamism, energy, and love of people - a great counterbalance to my general nerdy reservedness. As I've had to inform people of her death, I've been blown away again and again by the outsized reactions of sadness and grief from people, even those who only knew her through their jobs or from passing acquaintance – even our downstairs neighbor who shared no spoken language with Diana, was devastated by her loss. I’ve taken to thinking “She got to you too, didn't she?” each time.
I learned from my father's death in 2001 that our lives don't terminate in small boxes; they spread out and into the lives of every person whose life you entered. Diana touched and brightened the lives of an army's worth of people, far larger than I have - but none more than me.
Timeline of Illness:
March 2012: Complete hysterectomy. Ovaries, tubes, uterus, cervix, appendix, omentum & 1 foot of her colon were removed in an “optimal debulking”.
March- August 2012: 4.5 out of a scheduled 6 rounds of intraperitoneal chemo completed, cisplatin and Taxol. IP chemo is hard core; the majority of patients (as of 2012) do not complete it due to side effects - even patients as otherwise healthy as Diana. Fortunately, Diana’s response was strong, and her CA-125 dropped back to 7 by the second round. Her first remission lasted 18 months.
May 2014. CA-125 = 33. She also lost two molars, a common side effect of chemo.
October 2014: Diana begins chemo round 2 at Cedars Sinai. Carboplatin and Doxil.
April 2015: remission #2.
August 2015: CA-125 of 38 means chemo round 3: Gemcitabine/cisplatin. Severe thrombocytopenia forced us to hold the cisplatin; her cancer appeared to have become platinum resistant.
March 2016: Gemcitabine stopped working. Treatment ceased. Switched to a trial of a PARP inhibitor, niraparib.
June 2016: No dice on the niraparib; liver metastases make their first appearance on CT scans. 21 days later, we begin a second trial, a BET inhibitor.
July 2016: Strike two (or so we thought): continued growth of liver lesions, CA-125 getting into the thousands.
August 2016: We begin chemo round 4: weekly Taxol and Avastin. This is a last-ditch protocol, with only 45% chance of any positive response at all. Instructions for this protocol are simple: use until disease progresses. Worse: the cancer has already seen this drug, so the chances it is already resistant are high.
October 2016: We get a positive response – CA-125 drops back into the hundreds.
December 2016: Best Christmas gift Diana ever game me: a slip of paper showing her CA-125 at 14. This is a big deal – an incredible third remission! It wasn’t supposed to happen. “Anomalous” was the word used by the oncologist. She reported that Diana is the third patient she has seen show anomalous response to high-dose Taxol following BET inhibitor use. Diana had gone and pulled a rabbit out of a hat – and better: her anomalous response could end up being a lead to treatments that could save the lives of other women down the road.
I took full advantage and spend the extra $ to fly her to Canada for Christmas 2016 with me to see my niece and nephews one more time. We're in extra innings now, as literal as "sudden death" gets; I've no way to know if she'll have the chance again.
January 2017: Diana’s CA-125 begins to edge up again, and so we stop the high-dose Taxol. Since we are seeking to try another clinical trial or experimental treatment, we elect not to continue the maintenance Avastin, seeking to be “clean” for potential study medications.
June 2017: We begin treatment with Ibrance, a new breast cancer drug found to be effective against a particular mutation in breast cancer, that was also present in Diana’s tumor. She was doing this even as the FDA did the same in a historic first, approving a cancer immunotherapy drug (Keytruda) on the basis of specific genetic mutations instead of site-of-origin.
July 2017: Unfortunately, Diana's cancer blindsided her before Ibrance had a chance to take effect. Over the span of this month, Diana began a precipitous decline, as the cancer had rapidly begun to take over her liver, precluding any further treatment. Worse, it happened so fast that we could not tell if Ibrance had even had a chance to work. She went from a first-deck seat at Dodger Stadium on July 5 to hospice in Pasadena on August 1, where she passed away as I held her hand.
This fundraiser shall first be used to defray the following expenses:
1. Embalming in California
2. Transportation to Kansas City, Missouri
3. Service and burial in Terrace Park Funeral Home and Cemetery
4. Travel costs to attend funeral
5. Unforeseen medical expenses, including Hospice care bills.
6. Costs to settle estate.
The first two items have already been incurred; the latter four are still indeterminate.
So what about extra funds?
Diana was a fighter from day one. Her first thoughts upon coming out of the anesthesia, after I told her that the diagnosis was cancer, were these: “To hell with this cancer, I’m a newlywed and I’m going to LIVE!” I think that Diana would absolutely love to know that her fight could outlast even her death.
There's been an incredible amount of new discoveries and potential new treatments for cancer in general over the past five years. The field of immunotherapy in particular has become a very target-rich environment – there’s never been a better time to take a shot at it. There’s more new leads than there are researchers to follow them and dollars to support them.
Diana's experience helped further this fight. Let’s get them even more ammunition – for Diana and for all the other woman fighting this disease. While breast cancer is seeing successes -- the five-year survival rate for stage III breast cancer as a whole is 72% - ovarian is only half that. In surviving over 5 years, Diana beat a survival rate of only 39% for stage III.
With help from Akiko Ashley, I’m not going to take the easy way out and just shovel it at a cancer organization; we’re going to research and select a beneficiary that can use every dime on ovarian cancer needs – patient advocacy and support, and/or ovarian cancer researchers right here in Los Angeles.